Educational approaches and conditions for effective ...

Self-management education for patients with chronic diseases in South Africa

Loveness Dube

February 2017

Thesis presented for obtaining the degree Doctor in Public Health Sciences

Faculty of Public Health

Université catholique de LouvainFaculty of Public Health

Institute of Health and Society - Institut de recherche santé et société (IRSS)Psychological Sciences Research Institute - Institut de Recherche en Sciences Psychologiques (IPSY)

Supervisors : Professor Stephan Van den Broucke (UCL) Professor William D’Hoore (UCL) Dr. Anne-Marie Bergh (University of Pretoria)

Despite the high need for self-management education (SME) for chronic diseases in developing countries, existing programmes have almost exclusively been de-veloped and evaluated in developed countries. This thesis looks at the feasibility of a more context-specific approach to chronic disease SME in resource-limited settings by investigating the needs for SME in a developing country (South Afri-ca), developing a SME tool that meets these needs, and testing the conditions for its successful implementation. The thesis consists of a series of research papers investigating the current status of diabetes SME in developing countries, the characteristics of existing SME programs in South Africa, the perceived needs for self-management among chronic patients and experts, and the feasibility of a contextually adapted SME tool for diabetes and hypertension in the form of a care-plan booklet. A pilot study of the use of this tool showed positive changes in hypertension knowledge and served as a basis for a larger effect study proto-col. By adding to the knowledge on chronic disease SME in resource-limited set-tings this thesis can inform decision-makers to help integrate self-management into routine care.

Loveness Dube comes from Chipinge, Zimbabwe and she completed her high school edu-cation at Mabelreign Girls High School in Harare. In 2009 she obtained a Bachelor in Social Work at the University of Fort Hare in South Africa. From 2009 to 2012, Miss Dube worked as a social worker in child protection services at Johannesburg Child Welfare. She completed a Mas-ter in Public Health at the Uni-versity of Pretoria in June 2013. From October 2013 to February 2017 she enrolled in a PhD pro-gram at the Université catho-lique de Louvain in Belgium. She authored three articles pu-blished in peer-reviewed scien-tific journals.

Self-

man

agem

ent e

duca

tion

for p

atie

nts

with

chr

onic

dis

ease

s in

Sou

th A

fric

a

Lov

enes

s D

ube

201

7

Educational approaches and conditions for effective implementation

i

Loveness DUBE

Self-management education for patients with chronic

diseases in South Africa: Educational approaches and

conditions for effective implementation

Faculty of Public Health

Institute of Health and Society

ii

Cover picture: The Wellness Coalition©

iii

JURY

Supervisor: Prof. Stephan Van den Broucke (UCL)

Co-supervisors: Prof. William D’Hoore (UCL)

Dr. Anne-Marie Bergh (University of Pretoria)

Jury members:

Prof. Jean-Marie Degryse (President - UCL)

Prof. Isabelle Aujoulat (UCL)

Prof. Vincent Lorant (UCL)

Prof. Bernard Vandeleene (UCL)

Prof. Walter Sermeus (Katholieke Universiteit Leuven)

iv

Contact details:

Université catholique de Louvain

Institut de Recherche en Sciences Psychologiques

10 Place Cardinal Mercier

1348 Louvain-la-Neuve, Belgium

Tel: +32 (0) 10 47 80 68

Email: [email protected] / [email protected]

mailto:[email protected]

mailto:[email protected]

v

To my mom

vi

ACKNOWLEDGEMENTS

This thesis would not have been possible without the support of few individuals that

I am gratefully indebted to:

I would like to express my sincere gratitude to my co-supervisor Dr. Kirstie-Rendall

Mkosi (posthumously) who passed away before the finalization of this thesis. She

would have loved to see the end result … anyway you are greatly missed.

Very special thanks go to my supervisor Professor Van den Broucke, for your

constant support and guidance throughout the research at the Université catho-

lique de Louvain. Thank you for your faith in me that I could do this work.

To my co-supervisor Dr. Anne-Marie Bergh (University of Pretoria), you have been

there in the times of need; you have been a pillar of strength for me. Thank you for

your unwavering support and allowing me to tap into your knowledge and experi-

ence. You have been and will always be my source of inspiration.

To my co-supervisor Professor D’Hoore, thank you for everything from the

beginning, especially for those days where you had to clarify things.

Thanks to the two institutions that made this work possible; the Université

catholique de Louvain for the PhD scholarship and the University of Pretoria for the

two research assistant grants.

To the research assistants Mr Precious Hajison, Ms Petronella Mzalamba and Ms

Keabetswe Kodi, this work would have been difficult to realize without your help

with data collection.

To the staff members of the University of Pretoria; Mrs Lizeka Napoles for your

support and guidance whenever needed and to Professor Kuku Voyi, Dr. Elize

Webb, Professor Paul Rheeder and Professor Dannie VanZyl for your constant

support in the academic journey. To Nokuthula Mafutha, thanks for your assistance

and for your sacrifice even though you were also working on your own thesis.

vii

Thanks to the members of the Diabetes Literacy team, Diane Levin-Zamir, Gerard

Van der Zanden, Lucy Yardely, Peter Schwatrz, Henna Riemenschneider for your

support in reviewing manuscripts for publication and all the other members for your

support and guidance.

To Curo Health staff members, Dr. Richard Botha and Mrs Rosanne Ludick, thank

you very much for your support in the development of the care-plan booklet.

To my colleagues at the Université catholique de Louvain at Louvain-la-Neuve

campus, Dr. Marie Housiaux and Louise Schinckus, you were the first contacts in a

foreign land and thank you for your comfort and support, especially when I was

missing home. To Monica Suárez and Pablo Alonso Peña, you joined the team a

bit later but thanks for the support. And to Sophie Agboli at Woluwe campus, you

have been there through thick and thin, you were a shoulder to cry on when it

really got tough. Thank you for being there.

Special thanks also go to the members of the jury, Professor Jean-Marie Degryse

(President), Professor Isabelle Aujoulat, Professor Vincent Lorant, Professor

Bernard Vandeleene and Professor Walter Sermeus (Katholieke Universiteit

Leuven) for your critical comments, which have by far improved this work.

To my family, my father and mother, thank you for your unfailing love and support

from childhood. It was not easy to send a child to school, especially a girl child, but

you did. And here we are today; I will always love you. To my siblings, I love you

and I thank you for your continued support, especially Dr. Francis Dube and wife

for everything you have done. To my uncles, Mr Jairos Ngorima and Mr Victor

Dube (posthumously) and their families, thank you for all your support. Although

sometimes things were tough, you persevered for me. To my cousins, Miriam

Phinda, thank you for showing me direction, and also to Carol Mukove, and Charity

Makua, thanks for everything, I can’t begin to count.

Last but not least, I am grateful to God Almighty who has made this journey

possible and has been my source of strength when I was weak, without him I

wouldn’t have made it this far.

ix

TABLE OF CONTENTS

LIST OF TABLES .................................................................................................... xiii

LIST OF FIGURES ..................................................................................................xiv

LIST OF ABREVIATIONS ....................................................................................... xv

GENERAL INTRODUCTION: Background and layout of thesis ................................. 1

Background ................................................................................................................................ 2

Burden of chronic diseases in developing countries .................................................. 2

The role of self-management ............................................................................................... 5

Research questions and objectives .................................................................................... 8

References ................................................................................................................................ 13

CHAPTER 1: Towards a model of self-management for chronic diseases ............ 17

Introduction ............................................................................................................................ 18

The need for self-management in chronic care.......................................................... 18

The chronic care model ....................................................................................................... 22

Models of or approaches to self-management ............................................................ 25

Conclusion ................................................................................................................................ 28

References ................................................................................................................................ 28

CHAPTER 2: The South African health context ....................................................... 31

Introduction ............................................................................................................................ 32

The formal healthcare sector in South Africa ............................................................. 33

Traditional healthcare ........................................................................................................ 39

Health literacy in South Africa .......................................................................................... 41

The context of this study ..................................................................................................... 42

Conclusion ................................................................................................................................ 43

CHAPTER 3: Systematic Review .............................................................................. 47

Abstract ..................................................................................................................................... 48

Introduction ............................................................................................................................ 49

Methods ..................................................................................................................................... 52

Results ....................................................................................................................................... 55

x

Discussion ................................................................................................................................ 75

Conclusion ................................................................................................................................ 77

References ................................................................................................................................ 78

CHAPTER 4: An audit of policies and programs .................................................... 83

Abstract ..................................................................................................................................... 84

Introduction ............................................................................................................................ 86

Design and Methods ............................................................................................................. 87

Results ....................................................................................................................................... 90

Discussion .............................................................................................................................. 103

Conclusions ............................................................................................................................ 106

References .............................................................................................................................. 107

CHAPTER 5: Self-management needs assessment ............................................ 111

Abstract ................................................................................................................................... 112

Methods ................................................................................................................................... 116

Results ..................................................................................................................................... 120

Discussion .............................................................................................................................. 127

Conclusion .............................................................................................................................. 129

References .............................................................................................................................. 130

CHAPTER 6: Development of a care-plan booklet ................................................ 135

Introduction .......................................................................................................................... 136

Printed materials for health education ....................................................................... 138

The prototype care-plan booklet .................................................................................. 142

Conclusion .............................................................................................................................. 149

References .............................................................................................................................. 150

CHAPTER 7: Feasibility study ............................................................................... 153

Summary ................................................................................................................................. 154

Introduction .......................................................................................................................... 155

Method ..................................................................................................................................... 157

Results ..................................................................................................................................... 161

Discussion .............................................................................................................................. 170

xi

Conclusion .............................................................................................................................. 173

References .............................................................................................................................. 173

CHAPTER 8: Pilot study ........................................................................................ 177

Abstract ................................................................................................................................... 178

Introduction .......................................................................................................................... 179

Method ..................................................................................................................................... 181

Results ..................................................................................................................................... 185

Discussion .............................................................................................................................. 186

Conclusion .............................................................................................................................. 187

References .............................................................................................................................. 189

CHAPTER 9 –Main findings and discussion .......................................................... 191

Introduction .......................................................................................................................... 192

Summary of main findings ............................................................................................... 192

Discussion of the main findings ..................................................................................... 198

Strengths and limitations of studies ............................................................................ 206

Conclusion .............................................................................................................................. 207

References .............................................................................................................................. 208

CHAPTER 10 - Study protocol ............................................................................... 213

Introduction .......................................................................................................................... 214

Statement of problem ........................................................................................................ 216

Aim, objectives and hypothesis ...................................................................................... 216

Method ..................................................................................................................................... 217

Conclusion .............................................................................................................................. 231

GENERAL CONCLUSION – Conditions for effective implementation ..................... 237

References .............................................................................................................................. 241

PUBLICATIONS & SCIENTIFIC COMMUNICATION ................................................ 245

APPENDICES ....................................................................................................... 247

APPENDIX A ......................................................................................................... 249

APPENDIX B ......................................................................................................... 285

APPENDIX C ........................................................................................................ 287

xii

APPENDIX D ........................................................................................................ 309

xiii

LIST OF TABLES

Table 1.1 Care differences between acute and chronic conditions 20

Table 1.2 Comparison of patient education and self-management 23

Table 3.1 Study characteristics for T2DM in low mortality developing

countries

57

Table 3.2 Study characteristics for T2DM in high mortality developing

countries

61

Table 3.3 DSME Intervention/programs characteristics for T2DM in

low mortality developing countries

64

Table 3.4 DSME Intervention/programs characteristics for T2DM in

high mortality developing countries

73

Table 4.1 Number of respondents from each province 91

Table 4.2 DSME information extracted from guidelines using the

International Standards for Diabetes Education

94

Table 4.3 Timeframes of structured programs 99

Table 4.4 Content included in programs and ad-hoc interventions 101

Table 5.1 Overview of participant characteristics, sampling and data

collection strategies

117

Table 5.2 Main themes and categories 121

Table 6.1 Differences between the Curo Health care-plan and the

new prototype care-plan booklet

143

Table 8.1 Demographic characteristics of participants completing the study 182

Table 8.2 Results of paired samples t-test 185

Table 9.1 Main themes and categories 195

xiv

LIST OF FIGURES

Figure 0.1 Double burden of disease in low- and middle-income

countries compared to high income countries

4

Figure 0.2 Self-management as the core component of care 7

Figure 0.3 Overview of the thesis 10

Figure 1.1 The chronic care model 24

Figure 3.1 Flowchart of the selection process 53

Figure 4.1 Types of providers in diabetes self-management

education

100

Figure 9.1 Complexity of self-management process 202

Figure 10.1 Trial flow chart 218

Figure 10.2 Contents of the booklet 221

xv

LIST OF ABREVIATIONS

AADE American Association of Diabetes Educators

AIDS Acquired immune deficiency syndrome

BMI Body mass index

CCM Chronic Care Model

CDSMP Chronic Disease Self-Management Program

CHC Community health center

CHW Community health worker

DCST District-based clinical specialist support team

DM Diabetes mellitus

DSME Diabetes self-management education

GDP Gross domestic product

GDS Global diabetes survey

HbA1c (A1c) Glycated hemoglobin

HBM Health Belief Model

HIV human immunodeficiency virus

ICCC Innovative Care for Chronic Conditions

ICDM Integrated chronic disease model

IDF International Diabetes Federation

IDSE International Standards for Diabetes Education

LMIC Low-and-middle income country

NCD Non-communicable disease

xvi

NGO Non-governmental organization

NHI National health insurance

PHC Primary healthcare

RCT Randomized controlled trial

SDGs Sustainable Development Goals

SMBG Self-monitoring of blood glucose

SEMDSA Society for Endocrinology, Metabolism and Diabetes of South

Africa

SME Self-management education

SSA Sub-Saharan Africa

TB Tuberculosis

T1DM Type 1 diabetes mellitus

T2DM Type 2 diabetes mellitus

UNESCO United Nations Education, Scientific and Cultural Organization

WHO World Health Organization

WBOT Ward-based outreach team

1

GENERAL INTRODUCTION: Background and layout of

thesis

2

Background

Non-communicable diseases (NCDs), also known as chronic diseases, have

become the world’s major public health threat (1). NCDs affect people in all

countries, regardless of economic status, gender and age (2). Worldwide, NCDs

are the leading causes of morbidity, mortality and disability (3). According to the

World Health Organization’s (WHO) 2015 report, NCDs were the cause of 38

million out of the 56 million deaths in 2012 globally (2). It is estimated that NCDs kill

38 million people every year and 16 million of these deaths occur prematurely

before the age of 70 (3).

NCDs are diseases that cannot be passed from one person to another; they

develop and progress slowly and are of long duration. They can be classified in

four groups of diseases: cardiovascular diseases (heart attacks and stroke),

chronic respiratory diseases (asthma and chronic obstructive pulmonary disease or

COPD), cancers, and diabetes (4, 5). These NCDs are related in the sense that

they share common risk factors that are to a large extent preventable and

modifiable. More specifically, behavioral and lifestyle factors such as: tobacco use,

physical inactivity, unhealthy diets and harmful use of alcohol have a major effect

on the onset and course of NCDs (5-8). In 2012 these four groups of diseases

accounted for 82% of all NCD deaths worldwide (4). There is currently no cure for

NCDs and without treatment they result in a slow and painful death (9).

Burden of chronic diseases in developing countries

Although NCDs are a global challenge for the twenty-first century, they are more

felt and more devastating in developing countries (2, 10). Previously, NCDs were

mainly associated with the affluent, to the extent they were sometimes referred to

as “development diseases”. However, this is no longer the case, as NCDs are

accelerating at a faster rate in developing countries than they did in the developed

countries 50 years ago (11). Of the 38 million NCD deaths, three quarters (28

million) occur in developing countries (4) and 82% of the premature deaths as a

result of NCDs occur in developing countries (3). Despite the fact that NCDs are

3

leading causes of morbidity and mortality in low- and middle-countries (LMICs), the

prevention and control of NCDs is not a priority yet for most developing countries

(12, 13). Maher et al. argue that sub-Saharan Africa (SSA) has the greatest need

to improve the health system’s response to NCDs, as it experiences major NCD

deaths and does not have enough human and economic resources to effectively

respond to the rising double burden of communicable diseases (e.g. malaria and

tuberculosis) and NCDs (6).

In SSA, NCDs are the second leading cause of death. At the moment the burden of

communicable diseases still outnumbers that of NCDs as causes of death in SSA,

with 69% of deaths caused by communicable diseases (including tuberculosis and

malaria) in 2009 (14, 15). This situation is unique and more striking in SSA than

anywhere else in the world (14). However, as the epidemiological transition from

communicable to non-communicable in SSA continues the region will witness a

growing double burden of disease (14, 16). For example, it is estimated that the

number of people with hypertension will increase by 68% from 75 million in 2008 to

126 million in 2025 (17). Figure 0.1 illustrates the size of the double burden of

disease for LMICs compared to that in high income countries.

In developing countries, NCDs and communicable diseases do not just co-exist,

but interact with each other, whereby one exacerbates the other, leading to

multimorbidity (14-16). Moreover, Albreht et al. argue that worldwide the advances

in healthcare systems have transformed previously life-threatening diseases like

the human immunodeficiency virus (HIV) into chronic conditions requiring ongoing

care (18). In 2013 SSA had an estimated 24.7 million people living with HIV and

the acquired immune deficiency syndrome (AIDS), while also still carrying the

heavy burden of malaria cases (80% of 219 million cases worldwide) (17). While

tuberculosis is a well-known preventable and curable disease, the WHO report of

2013 estimated that SSA had 8.6 million incident cases (19).

4

Source: Lopez et al. (20)

Figure 0.1 Double burden of disease in low- and middle-income countries compared to high income countries

Developed countries have made considerable progress in focusing on and

addressing the burden of NCDs, whereas the developing world has paid less

attention to them, despite their rapid increase (6, 16). This is partly due to the latter

countries’ lack of funding and resources to effectively tackle the cumulative burden

of NCDs or their individual risk factors and the burden of communicable diseases

(16). On the other hand, the authorities of developing countries have also ignored

NCDs, because they are less visible, advance more slowly and are mostly

underdiagnosed (16). According to the International Diabetes Federation report of

2015, the African region had the highest proportion of undiagnosed diabetes,

where an estimated 14.2 million adults aged 20 to 79 had diabetes and over two

thirds of people with diabetes were undiagnosed (21).

5

Because of the lower visibility it took time for country leaders and policy makers to

acknowledge the challenge of NCDs while in the background these diseases were

causing the greatest damage (21). However, the high level United Nations (UN)

meeting of 2011 which brought heads of states together to discuss the issue of

NCDs, marks an onset of more consideration towards NCD control (9). Yet the

acknowledgement of the NCD burden does not always translate into the

development and application of policies to address NCDs. The greatest contributor

to the challenge of NCDs in Africa is the lack of political will in many states.

Because communicable diseases still claim more lives than NCDs, there is a

misperception that NCDs do not contribute that much to the burden of diseases

and therefore they are rarely on the national policy agenda (14).

The rising double burden of communicable and non-communicable diseases in

SSA is also linked to the question of sustainability in the field of health and

development. Alleyne et al. argue that as long as NCDs are present, it remains a

challenge to fully achieve health as an end goal of human development (7). The

current Sustainable Development Goals (SGDs) proposed by the United Nations

address the issue of NCDs as a target on the global health agenda for the first time

(22). Goal 3.4 of the SDGs is a target to “reduce by one third, by 2030, premature

mortality from NCDs through prevention and treatment and [to] promote mental

health and well-being” (23). The inclusion of NCDs into the SDGs was due to the

fact that the burden of NCDs needed a collective effort, as no country alone can

overcome the threat of NCDs (9, 24). Because NCDs act as a barrier to poverty

alleviation in all respects through a loss of productivity, premature deaths and high

costs for treatment, it is crucial to address them so that the relevant SDG can be

attained (2).

The role of self-management

Since NCDs are different from acute conditions in terms of duration and prognosis,

they require a different treatment approach (25). The available literature suggests

that the treatment of chronic disease can only be successful if it considers

6

psychological as well as medical factors, and promotes the quality of care of

services as well as enhancement of the autonomy of patients through therapeutic

education (26). Therefore, one of the critical success factors in the treatment of

NCDs is the self-management capacity of patients.

Self-management is defined by deSilva as “the actions individuals and carers take

for themselves, their children, their families and others to stay fit and maintain good

physical and mental health; meet social and psychological needs; prevent illness or

accidents; care for minor ailments and long term conditions; and maintain health

and wellbeing after an acute illness or discharge from hospital " (27) (p.1). Self-

management support refers to the actions undertaken by health professionals to

provide information and encourage patients to maintain greater control of their

condition and become capable of monitoring themselves and taking appropriate

action (27).

Because approximately 80 to 90 percent of the care for chronic patients lies in the

hands of individuals and their families, self-care is extensively required (27).

Therefore, the capacities of patients and families to manage their own illness and

care process are regarded as a key determinant of the treatment process. In order

to enhance these capacities, self-management education and support of chronic

patients is widely recommended. This especially holds true for patients in resource-

limited settings. Figure 0.2 depicts how self-management forms the core of chronic

disease management, whereby the healthcare providers assist by supporting the

patient. Some of the self-management actions to be performed by the patient

include taking medications, physical activity, eating healthy food and coping with

symptoms of the disease (25, 27, 28).

Self-management as an area of focus will be discussed in detail in Chapter 1 –

Towards self-management of chronic diseases.

7

Source: Centre for Managing Chronic Disease (29).

Figure 0.2 Self-management as the core component of care

An extensive literature shows that chronic disease self-management support and

education by health providers improves the way patients manage their conditions,

medication adherence, healthy behavior, self-efficacy, quality of life, and clinical

outcomes (27, 30). However, given the diversity of available self-management

programs and the relative scarcity of information regarding conditions for effective

implementation, further research is necessary before large-scale implementation in

LMICs can be recommended. In addition, the bulk of the literature on the

effectiveness of self-management programs is concerned with studies carried out

in developed countries. Consequently, their effectiveness in resource-limited

settings like SSA is not proven.

Recent literature reviews of health interventions implemented in SSA revealed that,

among other factors, linking interventions to the context of the target communities

improves the ownership of programs and acts as a facilitator to sustaining

interventions (17, 31). However, these reviews also mention that currently not

much attention is paid to sustainability, that programs tailored to the context and

the broader dynamic and complex health transition should be developed and

addressed in the region (17). Issues related to context in which this study was done

will be discussed in more detail in Chapter 2 – The South African context.

8

Research questions and objectives

To address the lack of evidence-based information regarding the effectiveness of

self-management programs for chronic diseases in resource-limited settings and

the conditions in which they must be implemented in order to be effective, the

current PhD study was undertaken. The overarching research question for this

research was:

What is the current status of self-management programs for chronic

disease management education in South Africa and how can they be

made more effective?

This broad question entails the following specific questions:

1. What is the current status of type 2 diabetes self-management education

programs in developing countries, and is there a difference between

countries with high and low mortality?

2. What policies and programs for diabetes education currently exist in South

Africa?

3. What are the experiences and needs of chronic disease patients and their

carers in South Africa with regard to self-management?

4. How feasible is the implementation of a contextually adapted self-

management education and support tool for diabetes and hypertension

patients?

5. What is the effectiveness of a self-management education and support tool

for diabetes and hypertension patients?

Based on these questions, the following study objectives were formulated, and

matching study designs were chosen to reach those objectives.

9

Objective Study design

• Review the current status of type 2 diabetes self-management education programs in developing countries in terms of contextual adaptation and catering for low health literacy

Systematic literature review

• Perform an audit by type and format of the current diabetes self-management education programs in South Africa

Cross-sectional

• Perform a needs analysis for self-management among chronic patients and health professionals in South Africa.

Qualitative

• Develop and test the feasibility of a contextually adapted self-management tool for diabetes and hypertension

Qualitative

• Pilot-test the effectiveness of the self-management tool with regard to health literacy and disease-specific knowledge

Quasi-experimental

Organization of the thesis

This thesis is organized around the five research questions and contains four

sections and ten chapters. Section One, which consists of the two first chapters,

provides the background for the study, in terms of the role of self-management in

addressing NCDs and the organization of the health care system in South Africa,

respectively. Section Two, which contains Chapters 3 and 4, presents two studies

assessing the current status of diabetes self-management education in developing

countries and specifically in South Africa. Section Three, consisting of chapters 5

through 8, looks at the development and testing of a contextually adapted self-

management education tool, and Section Four provides a summary and general

discussion of the findings, and presents a comprehensive protocol for a more

refined and larger effectiveness study of the self-management care-plan booklet.

Three chapters (Chapters 3, 4 and 5) are published papers, and two chapters

(Chapters 8 and 9) are manuscripts that have been submitted for publication. The

thesis ends with a general conclusion that details some of the conditions that may

10

need to be met for embarking on a larger implementation of an intervention. A

graphic overview of the section and chapter division of the thesis is provided in

Figure 0.3.

Figure 0.3 Overview of the thesis

A more detailed description of the four sections and chapters is given as follows:

Section 1: Background (Chapters 1 and 2)

In Chapter 1, we give a brief overview on self-management education and support,

its role and current status in the approach to chronic diseases. In Chapter 2, we

provide a detailed health system background of the study country, South Africa.

This background information describes the context in which this study was

conceived and carried out.

11

Section 2: Status of current interventions (Chapters 3 and 4)

As a start of our research, we looked at the current status of type 2 diabetes self-

management education (DSME) in high- and low-mortality developing countries by

way of a systematic review. This review and its results are discussed in Chapter 3.

For this review we extracted information on educational programs for type 2

diabetes and pre-diabetes. We extracted data on the content, the intervention,

strategy, duration, providers, the training of providers and the accessibility of

programs to people with low literacy. To extract information from eligible studies

retrieved we used the template for the global initiative for diabetes data collection

named Global Diabetes Survey (GDS) (32).

Chapter 4 presents the results of an audit of DSME conducted in seven of the nine

provinces of South Africa, with the intention to review the DSME policies and

guidelines presently available in South Africa, and to characterize the existing

DSME offered in both private and public healthcare sectors. The questions

addressed in the audit were to establish what types of DSME programs were

currently offered in different settings across the country, who implemented them,

what educational approaches were used, how the programs were structured, how

accessible they were, what challenges were faced, and to what extent they were

contextually and culturally sensitive. The results of this audit present a snapshot of

the current DSME status in South Africa.

Section 3: Development and testing of a self-management tool (Chapters 5, 6,

7 and 8)

In this section we first report on a qualitative study that was performed to explore

chronic patients’ experiences and perceived support needs and the perspectives of

key informants on patient self-management, with a view to develop contextually-

appropriate disease self-management support tools for chronic patients in South

Africa (Chapter 5). Focus group and individual interviews were conducted with

patients and individual interviews with key informants to address this issue.

12

The next chapter (Chapter 6) provides a detailed description of the development of

an individual care plan booklet as a self-management tool for diabetes and

hypertension in primary care facilities. The booklet was meant for use during

consultations with healthcare providers and to inform the patient on his or her

condition and the ways to manage it.

Chapter 7 presents a qualitative study conducted to explore the feasibility of the

use of the prototype of an individual care-plan booklet as a self-management tool

for diabetes and hypertension in primary care facilities in South Africa. For this

study which addressed the question whether this care-plan tool would work, focus

group and individual interviews were held with patients and providers to solicit their

perspectives on the care-plan booklet. Bowen et al. eight focus areas for feasibility

studies were used as a point of departure (33).

Lastly in this section, Chapter 8 reports on a quasi-experimental pilot study with

diabetic and hypertensive patients to test the potential effectiveness of the use of a

care-plan booklet. This chapter answers the question: Does the use of a self-

management booklet for diabetes and hypertension have an effect on health

literacy and disease-specific knowledge?

Section 4: Main findings and comprehensive study protocol (Chapters 9 and

10)

The last section starts with Chapter 9 which summarizes and discusses the main

findings of the different studies of this thesis. Chapter 10 (last chapter) details a

comprehensive protocol for a larger study that draws on the lessons learned from

the pilot and feasibility studies. This chapter could form the basis for a

methodologically more rigorous study to test the effectiveness of the care-plan

booklet and for further development and improvement of the intervention in future

research.

It is to be noted that the empirical work reported in this thesis focuses mainly on

diabetes. Hypertension was included at a later stage to align the study more

13

closely with the recent policy changes in the country of study (South Africa).

Whereas previously chronic diseases were considered separately, the adoption of

an integrated chronic-disease model in 2011 (34) called for a more horizontal and

integrated approach that made it less obvious to distinguish between chronic

diseases in practice. Furthermore, the studies in the thesis also report mostly on

type 2 diabetes and do not consider type 1 diabetes. In South Africa, type 1

diabetic patients are seen and managed at hospital level, and only under special

circumstances would a patient be transferred to a primary care facility. Since this

project was done in primary care facilities, it made more sense to focus on type 2

diabetic patients only.

References

1. Beaglehole R, Bonita R, Horton R, Adams C, Alleyne G, Asaria P, et al.

Priority actions for the non-communicable disease crisis. Lancet. 2011;377(9775):1438-47.

2. World Health Organization. Global status report on noncommunicable diseases 2014; Geneva: World Health Organization; 2014 [cited 17 July 2016]. Available from: http://apps.who.int/iris/bitstream/10665/148114/1/9789241564854_eng.pdf?ua=1.

3. World Health Organization. Chronic diseases and health promotion: Integrated chronic disease prevention and control. Geneva: World Health Organization; 2016 [cited 20 July 2016]. Available from: http://www.who.int/chp/en/.

4. World Health Organization. Noncommunicable diseases. Fact sheet. [Internet]. 2014 [cited 07 November 2014]. Available from: http://www.who.int/mediacentre/factsheets/fs355/en/.

5. World Health Organization. Global status report on non-communicable diseases; 2010. [cited 05 August 2016]. Available from: http://apps.who.int/iris/bitstream/10665/44579/1/9789240686458_eng.pdf.

6. Maher D, Ford N, Unwin N. Priorities for developing countries in the global response to non-communicable diseases. Global Health. 2012;8:14.

7. Alleyne G, Binagwaho A, Haines A, Jahan S, Nugent R, Rojhani A, et al. Embedding non-communicable diseases in the post-2015 development agenda. Lancet. 2013;381(9866):566-74.

8. Puoane T, Tsolekile L, Sanders D, Parker W. Chronic non-communicable diseases. In: Barron P, Roma-Reardon,J, editors. South African Health Review 2008. Durban: Health Systems Trust; 2008. p. 73-87.

14

9. Beaglehole R, Bonita R, Alleyne G, Horton R, Li L, Lincoln P, et al. UN High-level meeting on non-communicable diseases: addressing four questions. Lancet. 2011;378(9789):449-55.

10. Mendis S. Research is essential for attainment of NCD targets and Sustainable Development Goals. Glob Heart. 2016;11(1):139-40.

11. World Health Organization. The global burden of disease. Geneva: World Health Organization; 2016 [cited 19 July 2016]. Available from: http://www.who.int/nutrition/topics/2_background/en/print.html.

12. Mishra SR, Neupane D, Preen D, Kallestrup P, Perry HB. Mitigation of non-communicable diseases in developing countries with community health workers. Global Health. 2015;11:43.

13. Islam SM, Purnat TD, Phuong NT, Mwingira U, Schacht K, Froschl G. Non-communicable diseases (NCDs) in developing countries: a symposium report. Global Health. 2014;10:81.

14. de-Graft Aikins A, Unwin N, Agyemang C, Allotey P, Campbell C, Arhinful D. Tackling Africa's chronic disease burden: from the local to the global. Global Health. 2010;6:5.

15. Young F, Critchley JA, Johnstone LK, Unwin NC. A review of co-morbidity between infectious and chronic disease in Sub Saharan Africa: TB and diabetes mellitus, HIV and metabolic syndrome, and the impact of globalization. Global Health. 2009;5:9.

16. Yach D, Hawkes C, Gould CL, Hofman KJ. The global burden of chronic diseases: overcoming impediments to prevention and control. JAMA. 2004;291(21):2616-22.

17. Iwelunmor J, Blackstone S, Veira D, Nwaozuru U, Airhihenbuwa C, Munodawafa D, et al. Toward the sustainability of health interventions implemented in sub-Saharan Africa: a systematic review and conceptual framework. Implement Sci. 2016;11:43.

18. Albreht T, Dyakova M, Schellevis FG, Van den Broucke S. Many diseases, one model of care. JOC. 2016;6(1):12-20.

19. World Health Organization. World malaria report 2013. Geneva: World Health Organization; 2014 [cited 17 July 2016]. Available from: http://www.who.int/malaria/publications/world_malaria_report_2013/en/.

20. Lopez A, Mathers CD, Ezzati M, Jamison,DT, Murray CJL. Global burden of disease and risk factors. Washington, DC: The World Bank Group, 2006.

21. International Diabetes Federation. IDF Diabetes Atlas, 7th edn. Brussels, Belgium: International Diabetes Federation; 2015 [cited 20 January 2016]. Available from: http://www.diabetesatlas.org/resources/2015-atlas.html.

22. Hawkes C, Popkin BM. Can the sustainable development goals reduce the burden of nutrition-related non-communicable diseases without truly addressing major food system reforms? BMC Med. 2015;13:143.

23. World Health Organization. Health in 2015 from MDGs, Millenium Development Goals to SDGs, Sustainable Development Goals. Geneva: World Health Organization 2015.

24. Buse K, Hawkes S. Health in the sustainable development goals: ready for a paradigm shift? Global Health. 2015;11:13.

15

25. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469-75.

26. Fond-Harmant L. [Diabetes plans in six European countries and in Canada]. Santé Publique. 2011;23(1):41-53.

27. deSilva D. Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management. London: The Health Foundation; 2011 [cited 14 March 2015]. Available from: http://www.health.org.uk/publication/evidence-helping-people-help-themselves.

28. Lawn S, Schoo A. Supporting self-management of chronic health conditions: common approaches. Patient Educ Couns. 2010;80(2):205-11.

29. Centre for Managing Chronic Disease. About chronic disease 2016 [cited 10 October 2016]. Available from: http://cmcd.sph.umich.edu/about/about-chronic-disease/.

30. Cunningham P. Patient perceptions of clinician self-management support for chronic conditions. Am J Manag Care. 2016;22(4):e125-33.

31. Amazigo U, Okeibunor J, Matovu V, Zoure H, Bump J, Seketeli A. Performance of predictors: evaluating sustainability in community-directed treatment projects of the African programme for onchocerciasis control. Soc Sci Med. 2007;64(10):2070-82.

32. Schwarz PE, Gallein G, Ebermann D, Muller A, Lindner A, Rothe U, et al. Global Diabetes Survey – an annual report on quality of diabetes care. Diabetes Res Clin Pract. 2013;100(1):11-8.

33. Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, et al. How we design feasibility studies. Am J Prev Med. 2009;36(5):452-7.

34. Asmall S, Mahomed O. Integrated chronic diseases management manual. National Department of Health of South Africa; 2011 [cited 10 June 2014]. Available from: http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf.

17

CHAPTER 1: Towards a model of self-management for

chronic diseases

18

Introduction

In this chapter, we summarize the literature on the concept of self-management, its

introduction in the chronic care model, its current status in the management of

chronic disease and its differentiation to health education. In the general

introduction we have already introduced the concept of self-management in chronic

disease care.

The need for self-management in chronic care

Due to the growing number of chronic diseases in low-and-middle income countries

(LMICs) there is a great burden on the health system in terms of rising cost (1).

Van Olmen et al. argue that current efforts of both high-income and low-income,

developing countries are not enough to address the burden of non-communicable

diseases (NCDs) (1). They further note that the provider-centered models

introduced in high-income countries are labor intensive and therefore too

expensive and unsustainable for countries with limited resources (1). These

“paternalistic” models have been seen to produce poor results as they do not take

the chronic nature of the diseases into consideration and do not sufficiently

account for the role of the patients in the care and management of chronic

diseases (2, 3). For LMICs countries like in sub-Saharan Africa (SSA), provider-

centered models of care are not even possible because of inadequate human

resources and the high expenditures involved (1). In 2007 Anyangwe et al. pointed

out that SSA is among the regions with a highest need of healthcare but also lacks

human resources for health. As a result, SSA accommodated 11% of the world’s

population by 2007 and had a 24% share of the global burden of disease, but only

3% of the human resources to address the problem (4).

As noted earlier, NCDs are sometimes referred to as chronic diseases. According

to van Olmen et al. the definition of chronic diseases encompasses the fact that

they are “life-long conditions requiring long-term medical interventions and

adherence to medication and adjustments in life” (1) (p. 2). Although this definition

also includes conditions like the human immunodeficiency virus /acquired immune

19

deficiency syndrome (HIV/AIDS), it is a good fit for LMICs, especially in SSA, which

is currently undergoing the epidemiological transition from communicable to non-

communicable diseases (5, 6). As chronic diseases are life-long and persist over

time, there will be an increase in prevalence. This will, in turn, lead to an increasing

demand for healthcare services, thereby placing even more strain on the already

weak healthcare systems (1, 7, 8). Apart from straining costs for the healthcare

system, chronic diseases also place financial strains on families and individuals

and on society overall, as payment for hospitals care is sometimes an out-of-

pocket expense (1).

On the other hand, before the advent of chronic diseases, health systems were

focused on a paternalistic model where health professionals were the experts and

bringers of solutions, while patients were rather passive and on the receiving side

of advice from experts (9). This paternalistic model was perfect for treating acute

illnesses that are short in duration and for which medical adherence is not really a

problem, because patients know that if they stick to the regimen they will get better

(9). In contrast, chronic diseases are conditions that do not disappear and for which

affected people have to adjust their lifestyles in order to remain healthy (1). With

the advent of chronic diseases there is a change in the roles of patients from being

passive recipients of care to becoming active experts in managing their conditions,

while health service providers are partners.

Van Olmen et al. argue that people with chronic diseases are still people with

normal lives to live, having needs that are related to their conditions and also social

and economic needs. Upon diagnosis, these people have to change their lifestyles

to fit in the new element of their lives, where they have to experience the chronic

diseases every day for the rest of their lives (1). In order to get better a person has

to mobilize the available social, cultural, physical or medical resources. The

dynamic process involved after a person is diagnosed is described as “rebalancing”

(1). Table 1.1 gives an outline of differences in care between acute and chronic

conditions.

20

Table 1.1 Care differences between acute and chronic conditions

Acute care Chronic care

Cure available and expected Improvement of symptoms and impact on psycho-social life, but no cure expected

Short-term duration On-going care; often attached to stigma and discrimination

Short-term goals for a short period to achieve health outcomes

Health outcomes achieved by short-term goals for a longer period

The expert is the health professional

The patient is the expert through living with the condition

Directive and expected adherence to medication and health enhancing activities

Negotiation and cooperation is expected

Quality of life is a result of short-term professional care

Quality of life is a result of patient’s self-management and decision making and the on-going provision of support services

Source: Lawn et al. 2010 (9)

Bodenheimer et al. argue that in chronic diseases, unlike in acute conditions,

patients themselves are the principal caregivers and health professionals act as

consultants in supporting the patients (3). While patients only consult with health

professionals periodically, much of the time they are at home without the support of

health professionals and still have to constantly make choices that affect their

chronic condition (1). These decisions include, for example, whether they will

exercise, eat healthy, adhere to medication, or go for follow-up visits (1, 3, 9).

Lawn et al. argue that, therefore, an effective health service support is defined by

the existence of health professionals who understand the complexity of disease

management by patients (9). Van Olmen et al. add that the long-term nature of

chronic conditions and the effects that patients themselves have on the course of

development of their illness present an opportunity for them to learn and become

experts on their conditions (1). Shaw and Baker noted that in this “chronic condition

journey” some patients gain truly amazing experience as experts (2). It is therefore

21

clear that what patients need is not a lecture from health providers, but a web of

support that will enable them to cope and adjust their lifestyles.

Healthcare providers obviously have a great deal of knowledge about the disease

in general, but patients are experts in living with the condition itself and how it

makes them feel (1). For instance, only patients coming for medical consultations

really know what has happened prior to consultation. They know if they adhered to

the treatment or not, and for many reasons might decide not to share this

information with their health provider. In their attempt to fit in the “normative,

biomedical expectations of correctness”, patients may choose to offer socially

desirable rather than true answers during counseling or may even follow a healthy

lifestyle only a few days before the next medical consultation in order to make sure

that vital signs are in normal range (1, 10-12). In instances like these, if patients are

not taken as experts and respected for their role, the health professional will

assess patients according to his or her own expertise and make wrong decisions

for the treatment. Van Olmen et al. refer to this situation where the patient has

more information that can be used to make treatment decisions, rather than relying

only on the doctor’s knowledge only as “reverse asymmetry of information”, (1).

Therefore, people with chronic diseases not only need to be in the center of the

receiving care, but also need to be active and fully responsible for their condition.

To achieve this they need a lot of support from different stakeholders, including

families, healthcare providers and the social environment (1).

Supporting self-management in chronic care

As noted earlier, self-management support refers to the assistance that healthcare

providers and other caregivers can provide to patients in order to enable and

encourage them to make daily decisions to achieve better health (13). It

encompasses the process of making multi-level modifications in the health systems

and the community to enable patients to self-manage their disease(s) (14). In this

process, self-management education plays a pivotal role (1).

22

It is important to note that self-management education is different from patient

education, although the terms are sometimes used interchangeably. Traditional

patient education refers to providing disease-specific information to patients and

enhancing the technical skills that are necessary to control their disease, in the

assumption that better knowledge and skills will lead to better compliance with the

medical prescriptions and treatment. In contrast, self-management support

increases the health providers’ role from just giving out information to one of

helping patients and their families in building confidence and making decisions that

improve the management of the disease, which will consequently lead to better

outcomes (14). Self-management does not replace health services, but

complements them by building skills that can be applied at home and in routine

health consultations (15). Table 1.2 summarizes the difference between self-

management education and traditional patient education.

The chronic care model

The introduction of the concept of self-management in chronic diseases has to a

large extent been influenced by the chronic care model (CCM). The CCM is one of

the most significant models in chronic disease treatment and care. It is based on

the principle that, through proper training and support, many people can change

the advancement of disease by actively managing their own health (16). According

to the CCM model, certain health systems improve health outcomes through the

interactions between patients and providers (17). These health systems have

characteristics that include, among other aspects, a form of self-management

support that gives patients the priority to increase confidence and skills in

managing their own illnesses (17).

23

Table 1.2 Comparison of patient education and self-management

Patient education Self-management education

Supporting theory

Disease-specific knowledge leads to behavior change, which produces better clinical outcomes

Self-efficacy (confidence in life-improving activities) leads to better clinical outcomes

Content Technical skills and information about the condition

Skills and techniques on how to overcome problems

Formation of problems

Problems are a result of poor control of disease

Patient’s experienced problems are identified but may or may not be linked to the disease(s)

Goal of education

Patient must comply with behavior changes taught in order to improve outcomes

Patients increase self-efficacy in order to reach better outcomes

Link between education and the disease

Disease-specific education Education includes problem-solving skills in relation to chronic conditions

The educator The health professional Wide range of providers, including peers, health professionals, etc.

Source: Bodenheimer et al. 2002 (3)

The CCM model further argues that the management of chronic disease is best

achieved by productive interactions between a patient and the health system team

operating within a setting characterized by a reliable, evidence-based approach to

self-management (16). It considers six elements essential to chronic care: self-

management support, delivery system design, decision support, clinical information

systems, community resources, and healthcare organizations (17, 18). Figure 1.1

shows a graphic depiction of the CCM and its respective elements.

24

Source: Wagner, 1998 (17) Figure 1.1 The chronic care model

The self-management support element empowers and prepares patients to

manage their conditions, while emphasizing the role the patient plays in managing

his or her own health. The delivery system design assures the delivery of effective,

efficient clinical care and self-management support. The decision support promotes

clinical care consistent with scientific evidence and patient preferences. Clinical

information systems organize patient and population data to facilitate efficient and

effective care. Community resources and policies mobilize resources of the

community to meet the needs of patients. Finally, the health system creates an

organizational culture and strategies that promote safe and high quality care (17,

18).

In an effort to assist health systems in member countries to meet the increasing

challenges of chronic care, the World Health Organization (WHO) established a

framework entitled the Innovative Care for Chronic Conditions (ICCC): Building

25

Blocks for Action (19, 20). This framework and its building blocks are relevant for

both prevention and disease management for chronic diseases in healthcare

systems. The model places the patient and family, the community and the health

system in the center, with support of the larger healthcare organization, community

and policy environments (19). Although the ICCC model has been criticized

because it does not include issues of multi-morbidity, in LMICs like South Africa, it

is already applied for patients presenting with comorbidities (19).

Models of or approaches to self-management

To help implement self-management in practice, different models of self-

management have been developed and used in a variety of countries and settings

to aid health professionals to provide self-management support to patients (9).

These self-management models differ in many ways: how they are delivered;

where they are delivered; who delivers them; and how participants are recruited

(21). Despite these differences, however, they all attempt to provide a reliable,

organized approach to self-management support, while ensuring that core

minimum levels of best practice are achieved (9). Some of the more well-known

models and approaches are described below, namely motivational interviewing,

health coaching, the 5As model, the Chronic Disease Self-Management Program

(CDSMP) and the Flinders Program.

Motivational interviewing approach

Motivational interviewing is defined as “a collaborative conversation style for

strengthening a person’s own motivation and commitment to change” (22) (p. 12).

This patient-centered, non-judgmental approach was developed by specialists in

the field of addiction, especially alcohol. The principles of this approach include the

expression of empathy through reflective listening, developing a discrepancy

between where one is currently and where one wants to be, rolling with resistance,

assuming that the client is responsible for the decisions, and supporting self-

efficacy (9, 23). One of the main strengths of this approach is its potential

application in many different settings because of its flexibility and the suitability for

26

many patients with chronic diseases. Its main disadvantages are the extensive

training that is required for people who are not experienced in counseling, and the

lack a formal structure (9).

Health coaching approach

Health coaching is an approach in healthcare that uses principles of psychology,

coaching and counseling to assist people to achieve behavior change that

improves health outcomes (24). Health coaching can be done by a peer or a health

professional to support a chronic patient in becoming active in chronic disease self-

management. It can also involve telephone coaching. This approach is introduced

in a one- to two-day workshop and uses motivational interviewing and cognitive

behavioral approaches (9, 24). The flexibility of this approach and the application of

techniques at any stage of client readiness for change are some of the advantages

(9, 24).

The 5As model

Originally developed in the United States of America (USA) for smoking

interventions, the 5As model is currently used in primary care settings to provide

structure to communication between patients and healthcare providers (9). 5As

stands for:

Assess – asking about behavior

Advise – provide a clear message of reinforcement for change

Agree – establish and set goals founded upon readiness for change

Assist – in the gaining of skills, knowledge and support

Arrange – provide referrals and plan follow up

The framework can be followed by any trained professional, regardless of discipline

and level of experience. Its main disadvantage, however, is that in most cases it

can only be used as a short intervention because of time constraints (9).

27

The Stanford Chronic Disease Self-Management Program

The Chronic Disease Self-Management Program model was developed at Stanford

University’s School of Medicine in the 1990s. The program evolved from the

realization that the arthritis self-management program developed in the 1980s by

the same university had self-management skills common to a range of chronic

diseases (9, 24, 25). The CDSMP program is based on the theory of self-efficacy

and involves a peer-led, group-based approach with 10 to 15 participants meeting

for six weeks (26). Group leaders who include health professionals and peer-

leaders are trained for three days to conduct the program. The course involves

skills such as goal setting, action planning, healthy living, problem solving,

communication and working in partnership with health professionals (9).This model

is also used by the United Kingdom Expert Patient Program (27). A randomized

controlled trial evaluating the CDSMP over a three year period using self-efficacy,

healthcare utilization, health status, and self-management behaviors as outcome

indicators showed significant improvements in communication with providers,

physical activity, and less healthcare utilization (28, 29). The strengths of this

model revolve around the facilitation of empowerment through sharing and peer

learning. Its main limitations are that it is time limited and that not everyone is

comfortable in a group environment (9, 24).

The Flinders Program

The Flinders model was developed by the Flinders University’s Department of

Human Behaviour and Health Research in Australia in the 1990s (9, 30). This

program uses an individual patient-centered approach and care planning process

to facilitate behavioral change by incorporating motivational interactions between

patient and health providers. It is a one-on-one process requiring assessment and

care planning through standardized forms and tools. Providers attend a two-day

training course and submit case studies as part of training. The strength of this

model is the fact that it is individualized and person centered, whereas its main

limitation is its time-intensiveness (9, 30).

28

Conclusion

As chronic diseases require extensive self-care, self-management is crucial in

improving health and behavior outcomes. The previously “passive” patient concept

is rapidly being replaced by the “active” patient concept. As noted, self-

management does not replace care but complements the other components of

care. While different approaches to self-management exist, the end goal is always

to support patients in managing their condition. In this thesis we present studies

that look at the challenges related to the implementation of self-management

education in developing countries, using South Africa as a case exemplar. Before

doing so, however, the next chapter will outline the context in which these studies

were conducted by giving the reader an overview of the health system in South

Africa.

References

1. van Olmen J, Ku GM, Bermejo R, Kegels G, Hermann K, Van Damme W. The growing caseload of chronic life-long conditions calls for a move towards full self-management in low-income countries. Global Health. 2011;7:38.

2. Shaw J, Baker M. "Expert patient" – dream or nightmare? Br Med J (Clin Res Ed). 2004;328(7442):723-4.

3. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469-75.

4. Anyangwe SC, Mtonga C. Inequities in the global health workforce: the greatest impediment to health in sub-Saharan Africa. Int J Environ Res Public Health. 2007;4(2):93-100.



7. de-Graft Aikins A, Boynton P, Atanga LL. Developing effective chronic disease interventions in Africa: insights from Ghana and Cameroon. Global Health. 2010;6:6.

29

8. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177-87.


10. Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med. 2003;57(8):1409-19.

11. Vermeire E, Hearnshaw H, Ratsep A, Levasseur G, Petek D, van Dam H, et al. Obstacles to adherence in living with type-2 diabetes: an international qualitative study using meta-ethnography (EUROBSTACLE). Prim Care Diabetes. 2007;1(1):25-33.

12. Edwards M, Davies M, Edwards A. What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Patient Educ Couns. 2009;75(1):37-52.

13. Schaefer J, Miller D, Goldstein M, Simmons L. Partnering in self-management support: a toolkit for clinicians. Cambridge, MA: Institute for Healthcare Improvement; 2009 [cited 24 July 2016]. Available from: http://www.improvingchroniccare.org/downloads/selfmanagement_support_toolkit_for_clinicians_2012_update.pdf.

14. Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. Am Fam Physician. 2005;72(8):1503-10.

15. deSilva D. Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management. London: The Health Foundation; 2011 [cited 14 March 2015]. Available from: http://www.health.org.uk/publication/evidence-helping-people-help-themselves.

16. Johnston S, Liddy C, Ive SM, Soto E. Literature review on chronic diseases self-management. Toronto: SCO Health Service and Élisabeth Bruyère Research Institute; 2008 [cited 04 August 2016]. Available from: https://www.livinghealthynortheast.ca/Portals/0/Documents/Literature%20Review%20on%20Chronic%20Disease%20Self%20Management.pdf.

17. Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract. 1998;1(1):2-4.

18. Improving Chronic Illness Care (ICIC). The Chronic Care Model [cited 04 August 2016]. Available from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2.

19. Oni T, McGrath N, BeLue R, Roderick P, Colagiuri S, May CR, et al. Chronic diseases and multi-morbidity: a conceptual modification to the WHO ICCC model for countries in health transition. BMC Public Health. 2014;14:575.

20. World Health Organization. Innnovative care for chronic conditions: building blocks for action. Genevea: World Health Organization; 2002. [cited 18 January 2017]. Available from: http://www.who.int/chp/knowledge/publications/icccglobalreport.pdf?ua=1.

30

21. Lake AJ, Staiger PK. Seeking the views of health professionals on translating chronic disease self-management models into practice. Patient Educ Couns. 2010;79(1):62-8.

22. Miller W, Rollnick S. Motivational interviewing: helping people change. 3rd ed. New York: Guildford Press; 2013.

23. Emmons KM, Rollnick S. Motivational interviewing in health care settings: opportunities and limitations. Am J Prev Med. 2001;20(1):68-74.

24. Department of Health, Victoria, Australia. Common models of chronic disease self-management: a fact sheet for primary care partnerships [Internet]. [cited 04 August 2016]. Available from: http://vicpcp.org/wp-content/uploads/2015/10/Common-models-of-chronic-disease.pdf.

25. Stanford Patient Education Research Center. Chronic disease self-management program. [Internet]. 2016 [cited 04 January 2016]. Available from: http://patienteducation.stanford.edu/programs/cdsmp.html.

26. Lorig KR, Sobel DS, Stewart AL, Brown BW, Bandura A, Ritter P, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care. 1999;37(1):5-14.

27. Wilson PM, Kendall S, Brooks F. The Expert Patients Programme: a paradox of patient empowerment and medical dominance. Health Soc Care Community. 2007;15(5):426-38.

28. Lorig KR, Ritter P, Stewart AL, Sobel DS, Brown BW, Bandura A, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001;39(11):1217-23.

29. Lorig KR, Ritter PL, Laurent DD, Plant K. Internet-based chronic disease self-management: a randomized trial. Med Care. 2006;44(11):964-71.

30. Flinders Human Behaviour & Health Research Unit (FHBHRU), Flinders University. The Flinders Program™ for Chronic Condtion Management; 2010 [cited 04 August 2016]. Available from: http://www.flinders.edu.au/medicine/fms/sites/FHBHRU/documents/publications/FLINDERS%20PROGRAM%20INFORMATION%20PAPER%20FINAL_M.pdf.

31

CHAPTER 2: The South African health context

32

Introduction

Although chronic conditions are generic and global, their manifestations and

determinants are largely defined by local conditions and contextual influences.

Addressing these determinants therefore requires context relevant interventions

(1). Depending on the way health problems are manifested and the resources that

are available in a country, actions that can be undertaken to tackle these problems

differ. Related to this, it is a well-known fact that patient education and self-

management education are more effective when they are adapted to the context.

The seminal work of Kreuter et al (2) on cultural tailoring shows how culturally

sensitive interventions can be developed by adapting existing materials and

programs to the needs of the population. This adaptation depends on the beliefs

people hold and what is going on around them (3, 4).

The adaptation of self-management education to the specific situation in South

Africa is at the core of the studies presented in this thesis. However, in order to be

able to adapt an intervention to the local context, an understanding of this context

is required. While the contextual needs of patients and healthcare providers will be

addressed elsewhere in specific chapters of the thesis, it is also important to have

an understanding of the healthcare system. In this chapter we will introduce the

context in which the studies presented in this thesis were performed by providing

the reader with a background of the structure of the health system in South Africa.

In their description of realist evaluation Marchal and colleagues consider context as

“actors or other factors that are external to the intervention, present or occurring

even if the intervention does not lead to an outcome, and which may have an

influence on the outcome” (5) (p. 207). Contextual factors include institutional

facilitating factors (e.g. availability of resources) and society’s influencing factors

(e.g. socio-cultural aspects) (6). The current project focused on South Africa, which

is a middle-income country with a high mortality and characterized by a limitation of

resources for healthcare.

33

Like many sub-Saharan African (SSA) countries, South Africa is currently

undergoing an epidemiological change. The simultaneous occurrence of

communicable diseases and a rapid rise of non-communicable diseases (NCDs)

seen more notably after the political independence of 1994 are complemented by a

heavy burden of perinatal and maternal conditions, injury and violence (7). In 2011,

South Africa had a gross domestic product (GDP) of US$364, and in 2009/2010,

about 8.6% GDP was used on health delivery, which is similar to developed

countries like England. However, the large investment in health does not translate

into better health outcomes (8). In 2004, the World Health Organization (WHO)

estimated that the burden of NCDs in South Africa was three to four times higher

than in developed countries and in 2012 NCDs accounted for 43% of all deaths in

South Africa (9, 10).

One element in this situation is the high prevalence of infections with human

immunodeficiency virus (HIV) in South Africa. As a result of the widespread provi-

sion of antiretroviral treatment (ART), the acquired immune deficiency syndrome

(AIDS) caused by HIV is now being approached differently. HIV/AIDS has been

transformed to a chronic disease, with infected people living longer and developing

other NCDs similar to the rest of the population. Research has also shown that

other NCDs can develop as a result of side effects from medicines used in ART

(11, 12). Because of the transformation of previously acute conditions to chronic

diseases and the co-existence of HIV/AIDS with chronic NCDs, a pattern of

multimorbidity different from developed countries is evolving in low- and middle-

income countries (LMICs) (13).

The formal healthcare sector in South Africa

South Africa has a number of healthcare systems that sometimes complement

each other or sometimes run parallel to each other. The formal healthcare sector

has two tiers, a public sector and a private sector. Parallel to the formal western-

medicine based health system is the healthcare provided by traditional healers.

Some South Africans access both formal and traditional healthcare, with the

34

National Department of Health making an effort in formal regulation of the

traditional healers (11, 14, 15).

The formal private sector in South Africa offers services to about 17% of the

population and is responsible for 48% (US$13 billion per annum) of the total

national health expenditure. On the other hand, the state-funded public healthcare

system provides care to about 83% of the population and spent about US$14.5

billion per annum in 2013/2014. Because of the major burden of management and

treatment of diseases in the public health sector, about 11% of the government’s

annual budget is spent on healthcare, which is more than the 5% recommended by

the WHO. Major contributions are currently attributed to HIV and tuberculosis (TB)

and the high burden in the public health sector is aggravated by high levels of

unemployment and poverty. However, despite major efforts in the management

and treatment of disease, health outcomes are still poor compared to other middle-

income countries (11, 15, 16).

The public health system consists of primary healthcare (PHC) and three levels of

hospitals (district, regional and tertiary hospitals). PHC institutions are the first point

of patient contact with the health system and provide services free of charge.

Patients who need advanced treatment are referred to a district hospital, from

where they may be further referred to a regional or tertiary hospital for more

advanced care. South Africa’s private health system ranks among the top four

health systems in the world after Switzerland, the Netherlands and Belgium (15).

The private health system comprises health professionals providing private

services that are mainly funded from medical aid subscriptions. Complementary to

the two-tier health system are non-governmental organizations (NGOs) that use

donor funding to provide services, especially for HIV/AIDS and TB (11, 16).

The public health system is already facing enormous challenges, including

inequitable distribution of health personnel, inefficient and inequitable resource

allocation, and a curative-oriented health service (11). According to the WHO, as

cited in Jobson (16), one clinic should serve about 10,000 people. In South Africa,

35

one clinic on average serves 13,718 people, with an average of 2.5 visits per

person per year. The private health sector includes 73% of general practitioners,

with an average of 243 patients per doctor compared to the public health sector

with one doctor serving an average of 4,219 patients (16).

The growth in population from around 21 million in 1994 to around 52 million in

2013 highlights the need for more healthcare workers. In response, community

health workers (CHWs) have been employed to fill in this void and provide

voluntary, counseling and testing, TB treatment monitoring and home-based care.

More resources are allocated to preventative measures in order to limit the number

of people who develop complications (16).

Health inequalities in South Africa

The origins of health inequalities in South Africa emanate from discrimination

based on race and gender that was embedded in the apartheid history of the

country (17). Before political independence in 1994, there were policies on political,

economic and land restrictions according to one’s race, gender and age-based

hierarchies and these significantly impacted access to basic resources like health

services (17, 18). South Africa is a multiracial country with Africans constituting

around 79.2 percent of the general population alongside the minority populations

(whites, coloreds and Indians). Due to these historical discriminations, South Africa

is one of the countries with the highest Gini coefficient (the most used indicator of

income inequality with 0 meaning no inequality and 1 signifying great inequalities).

In 2005, South Africa had 0.73 percent Gini coefficient showing great inequalities

among the population (18). The government is trying to address the impact of

poverty and unemployment through social grants and South Africa is among the

few developing countries with this kind of system (17, 19). However, despite the

existence of social grants, many households remain poor with limited access to

health services. This then called for the restructuring of the health system and the

introduction of the National Health Insurance (NHI).

36

Restructuring of the public health system

South Africa is one of the countries that are currently implementing universal health

coverage, called the National Health Insurance (NHI). Universal health coverage is

defined as “the provision of primary healthcare services that are accessible,

equitable and responsive to the needs of target communities” (20) (p. 1). As the

double burden of diseases increases in South Africa, it will be a challenge to

provide affordable and effective healthcare to the increasing number of people

affected (20, 21). The NHI is planned to be phased in over a 14-year period, with

pilot districts starting in 2012. An ideal health system is suggested to have the six

building blocks consisting of (1) human resources, (2) medicines and technology,

(3) universal health coverage, (4) information systems, (5) financing and

governance, and (6) service delivery. However, maintaining these building blocks

will be a challenge for most resource-limited settings like South Africa, as the

double burden of disease further weakens the health system (16, 20, 22).

In the NHI, PHC is being re-engineered and services are provided through three

streams:

• Municipal ward-based outreach teams (WBOTs) provide health promotion

through community involvement. Each municipal ward has a team led by a

health professional. Each team serves a specific number of the allocated

households.

• District-based clinical specialist support teams (DCSTs) comprise a team

of health specialists addressing priority health-care programs in reducing

maternal and child mortality and improve general health outcomes.

• School health services in a form of health promotion, with preventive and

curative services provided by professional nurse-led teams to address the

needs of school-going children (16).

37

The South African Integrated Chronic Disease Management model

As part of their PHC re-engineering efforts the South African government recently

adopted the Integrated Chronic Diseases Management (ICDM) model based on the

WHO’s “Innovative Care for Chronic Diseases” (ICCC) (13). The ICDM “is a model

of managed care that provides for integrated prevention, treatment and care of

chronic patients at primary healthcare level … to ensure a seamless transition to

‘assisted’ self-management within the community” (23) (p. 11). The ICDM’s aim is

to reach best clinical outcomes for patients with chronic conditions by using the

health system building blocks approach. The rationale behind the development of

this management model was to address the paradigm shift in the burden of disease

and to be able to achieve a comprehensive, appropriate and effective provision of

long-term chronic care services, while at the same time responding adequately to

acute care services (11, 23).

The ICDM model is linked to the chronic disease model (CCM) and has four

additional building blocks to the CCM (24). The ICDM building blocks are

organization of health, delivery systems re-design, clinical management support,

clinical information support, human resources, medicine supply and management,

equipment supply, health information, leadership and advocacy. The assisted self-

management element of the ICDM seeks to empower patients and create

awareness of ownership of their own health by providing access to care through

the ward-based outreach teams (11).

Alongside the ICDM, South Africa has developed and implemented its Strategic

Plan for the Prevention and Control of Non-Communicable Diseases 2013-17 in

order to address the rapidly rising NCD burden (23, 25). As can be noted, South

Africa is already moving forward in the direction of self-management and patient-

centered care.

38

Efforts towards the prevention of NCDs

South Africa was among the first countries in SSA to develop policies to fight

against NCDs. Firstly, there is the Tobacco Products Control Act (Act 83 of 1993),

amended in 1999 and 2007 (26-29). Globally, this type of legislation has come to

be one of the most effective policies. Since young adults were previously targeted

by tobacco companies, the Act now protects children and adolescents through

banning advertising. It also acknowledges the right of non-smokers to a clean envi-

ronment by protecting them against second-hand smoking (30). The Liquor Act

(Act 59 of 2003), amended in 2008, was implemented to protect the population

from advertising that attracts minors and an age restriction on selling alcohol to

minors has been enforced (31, 32). Hours of trading have also been restricted and

alcohol is heavily taxed in an effort to reduce alcohol abuse (30, 33).

The food-based dietary guidelines developed in 2001 and revised in 2013 have

been approved by the National Department of Health (34). They are revised on a

continuous basis and are used to educate people on the prevention of NCDs.

Although there are significant barriers to their implementation, such as poverty,

these guidelines could be used as a basis for a healthy eating plan to prevent

NCDs (30). Although the ICDM model has been adopted in South Africa, the self-

management aspect of this model needs to be enhanced in order to reach

optimum implementation.

On the other hand, it appears that South African citizens have not really benefited

from the anticipated progress in healthcare policies since the year 1994 due to low

quality, poor and uneven access to healthcare, which can be attributed to poor

health systems and disease burden (7, 11). The NCD burden is rising, even in rural

communities, and also affects the urban poor. This result in major repercussions in

terms of the demand for treatment and care for chronic conditions and the ability to

provide acute and chronic care services (7). Because of the rising mortality from

NCDs, especially in rural areas, and also the mounting pressure from NCDs on

healthcare services, it is evident that South Africa’s effort leaves much to be

desired and more could be done (11, 30).

39

Traditional healthcare

As noted earlier, the traditional health system runs parallel to the western health

system. In the general household survey of 2014, participants were asked on

whom they consulted first when they fell ill or got injured. Sixty-nine percent

(69.3%) of households reported that they would first go to public clinics or

hospitals, 28.9 percent said that they would first consult a private doctor, or go to a

private clinic or hospital, and 0.5 percent said they would first go to a traditional

healer. In 2002 the World Health Organization (WHO) reported that in Africa about

80% of the population used traditional medicines.

Although the two healthcare systems co-exist in a form of medical pluralism, there

are indications of controversies. The current drive to promote collaboration

between the biomedical (western) and the healing (traditional) paradigms is

surrounded by mistrust, tensions and unresolved issues (14). These conflicts and

mistrust could be one of the reasons why some traditional healers tell their patients

not to mention their consultations with a traditional healer when visiting a medical

doctor or why they advise their patients not to take western medicine at all (14, 35).

In traditional African healing, it is believed that traditional healers are the channels

through which the interconnected worlds of the physical, psychological, spiritual

and ancestral are conversed with. There are four different categories of traditional

healers and each provides a different set of services. Traditional surgeons (ingcibi)

perform circumcisions; diviners (sangoma) consult, diagnose and prepare herbs;

herbalists (inyanga) consult, identify, collect and dispense herbs; and traditional

birth attendants (abebelethisi) are consulted for conception, pregnancy and pre-

and postnatal care (36, 37).

To better understand the context of traditional healthcare in South Africa, it is

important to also explore explanations for the causes of illness and disease

through the lens of medical anthropology, the field of study describing human

health in society from a cultural context (38). One of the points of departure is that

an individual’s definitions and perceptions of health and illness are influenced by all

40

the spheres of life around him or her, including cultural factors (39). Herselman (40)

defines illness in this context as “patients’ subjective experiences and

interpretations of sickness in line with their health-belief system rooted in culture”

(p. 62). Disease is described as “a physiological or psychological process of

malfunctioning of the body manifest in specific symptoms recognized by the

medical profession which gives its identity” (40) (p. 62).

According to Herselman (40) and Nksoi (38), there are traditional explanations for

the causes of illness and disease in the population:

• Punishment for disobedience. The illness is believed to be imposed by

supernatural forces, either the ancestors or the spirit of light. As dead

people are considered important and believed to connect the living with the

creator, it is imperative to always please the ancestors and failure to

appease them will bring punishment (illness, bad luck or misfortune). When

customs are neglected, for example failure to offer an animal sacrifice after

a relative’s death will result in the ancestors withdrawing their protection

and causing illness or misfortunes. Illness will now be interpreted as a type

of communication in the form of penalty for opposing accepted norms.

Illnesses caused by supernatural forces are believed not be understood

and cannot be treated by western medicine.

• Witchcraft and sorcery. Another cause of illness and disease is believed to

be through spiritual practice that invokes spirits of darkness to be

transmitted through the spiritual world in the form of curses, words or name

calling. Witchcraft involves hateful activities of one who influences the

power inherent in a person in order to bring harm on others. Anyone could

be the witch and accusations occur between relatives or neighbors and

usually these reveal tensions consequential to competition over limited

resources for instance in polygamous relationships. Sorcery is associated

with using magical powers or spells to manipulate personal objects like the

placentas or nail pairings. This is why at child birth personal remains like

the placenta are strictly protected and buried around the house where they

41

are believed to be sheltered by the ancestors. Usually witchcraft is

considered to be aggravated by jealousy of the other person.

• Cultural norms and practice. Sometimes sickness is believed to be caused

by the violation of a taboo. For example, the Pedi (Northern Sotho) people

believe that a woman should not have sexual relations during menstruation

or during the first three months of pregnancy. If this happens the woman

becomes impure and suffers from the condition of ‘heat’, called fisa. When

someone is impure he or she is vulnerable to misfortune and must be

cleansed through a ritual called ditlhapiso. People who are ritually impure

should be avoided and any contact with them would also bring sickness to

the perpetrator.

Many South Africans practice dual consultation of both traditional healers and

medical doctors for a variety of reasons, including maximizing chances of recovery

or getting a second opinion on their condition in order to aid coping with disease.

The medical practitioner is consulted for alleviating symptoms and the traditional

healer for finding the root cause and making sure the condition does not occur

again. Relatives may also insist on visiting the traditional healer to perform healing

procedures before going to the hospital (38, 40). Although public healthcare is free

of charge, lack of transport fees may cause some people to depend on a traditional

healer situated nearby.

Health literacy in South Africa

In South Africa there is a paucity of information on healthy literacy (41). Although it

is one of the African countries with high levels of general literacy, it is also one of

the countries known to have a high burden of disease. Studies show that although

education and literacy are key determinants of health, they do not necessarily

ensure health literacy (41, 42).

A recent systematic review by Sorensen et al defined health literacy as “the

knowledge, motivation and competence [of a person] to access, understand,

appraise and apply health information in order to make judgments and take

42

decisions in everyday life concerning healthcare, disease prevention and health

promotion to maintain or improve quality of life during the life course” (43) (p. 3).

Research indicates that poor health literacy is linked to poor adherence to

treatment, higher mortality and increased use of services, less disease knowledge

and self-management skills (41, 44, 45).

As health promotion is defined as a process of enabling people to take control of

their lives, it is important that the health-literacy skills of the population are

considered, especially in resource-limited settings (41, 46).

The context of this study

The study reported in this thesis was conducted in the formal healthcare system,

mainly in the Mamelodi Township, one of the six major townships in the City of

Tshwane (also known as Pretoria). Tshwane is a metropolis established in the year

2000 and is the administrative center and the capital city of South Africa. According

to the 2011 census, Tshwane is home to about 2.9 million people, with 70 percent

of the population being between 15 and 64 years old. More than half the population

is more than 20 years of age and has formal education. There are 911,536

households in Pretoria and 80 percent of the population lives in formal dwellings.

About 76 percent of households have a flush toilet connected to a sewage pipe; 64

percent have piped water inside the house, 88 percent have electricity lighting; and

80 percent have refuse removals weekly (47).

Townships are urban living areas that were reserved for the non-white population

from the late 19th century until the end of apartheid in South Africa in 1994 (48).

The township of Mamelodi is located in the northeast part of the city and was

established in 1953. At the moment it is the second largest township in Pretoria

after Soshanguve. Mamelodi has a total population of 334,577, according to the

census of 2011 (47). The population is mostly made up of black Africans (98%),

with the most common language being Sepedi (also known as Northern Sotho)

(42%) (47).

43

Conclusion

The context in which an intervention is being delivered is important, because

behaviors are influenced by what is going on around the person and the beliefs

and traditions they hold (49). Therefore, for the effective implementation

interventions need to be adapted to suit the context for which they are meant.

The next chapter presents a study on a systematic review of literature on diabetes

self-management education in high- and low-mortality developing countries. We

started the study by looking at the broader context of developing countries. Later

we narrowed the focus to one specific resource-challenged, middle-income

country, and finally focused on a resource-limited setting within South Africa.

References

1. Van den Broucke S. How international is health promotion? Health Promot Int. 2016;31(3):491-4.

2. Kreuter MW, Lukwago SN, Bucholtz RD, Clark EM, Sanders-Thompson V. Achieving cultural appropriateness in health promotion programs: targeted and tailored approaches. Health Educ Behav. 2003;30(2):133-46.

3. Barrera M, Jr., Castro FG, Strycker LA, Toobert DJ. Cultural adaptations of behavioral health interventions: a progress report. J Consult Clin Psychol. 2013;81(2):196-205.

4. Betsch C, Bohm R, Airhihenbuwa CO, Butler R, Chapman GB, Haase N, et al. Improving medical decision making and health promotion through culture-sensitive health communication: an agenda for science and practice. Med Decis Making. 2016;36(7):811-33.

5. Marchal B, van Belle S, van Olmen J, Hoeree T, Kegels G. Is realist evaluation keeping its promise? A review of published empirical studies in the field of health systems reaserch. Evaluation. 2012;18(2):192-212.

6. Goicolea I, Vives-Cases C, San Sebastian M, Marchal B, Kegels G, Hurtig AK. How do primary health care teams learn to integrate intimate partner violence (IPV) management? A realist evaluation protocol. Implement Sci. 2013;8:36.

7. Mayosi BM, Flisher AJ, Lalloo UG, Sitas F, Tollman SM, Bradshaw D. The burden of non-communicable diseases in South Africa. Lancet. 2009;374(9693):934-47.

8. Naledi T, Barron P, Schneider H. Primary Health Care in SA since 1994 and implications of the new vision for PHC re-engineering. In: Padarath A,

44

English R, editors. South African Health Review. Durban: Health Systems Trust; 2011. p. 17-28.

9. World Health Organization. Noncommunicable diseases country profiles, 2014. Geneva: World Health Organization; 2014 [cited 18 January 2017]. Available from: http://apps.who.int/iris/bitstream/10665/128038/1/9789241507509_eng.pdf?ua=1.

10. The global burden of disease: 2004 update. Geneva: World Health Organisation; 2008 [cited 10 November 2014]. Available from: http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf?ua=1.

11. Mahomed OH, Asmall S. Development and implementation of an integrated chronic disease model in South Africa: lessons in the management of change through improving the quality of clinical practice. Int J Integr Care. 2015;15:e038.


13. Oni T, McGrath N, BeLue R, Roderick P, Colagiuri S, May CR, et al. Chronic diseases and multi-morbidity: a conceptual modification to the WHO ICCC model for countries in health transition. BMC Public Health. 2014;14:575.

14. Moshabela M, Zuma T, Gaede B. Bridging the gap between biomedical and traditional health practitioners in South Africa. In: Padarath A, King J, Mackie E, Casciola J, editors. South African Health Review 2016. Durban: Health Systems Trust; 2016. p. 83-92.

15. Ramjee S, Vieyra T, Abraham M, Kaplan J, Taylor R. National Health Insurance and South Africa's private sector. S Afr Health Review. 2015;3(9).

16. Jobson M. Structure of the health system in South Africa: actions to secure the right to health in South Africa. [Internet]. Khulumani Support Group, 03 November 2015. Available from: http://www.khulumani.net/active-citizens/item/1164-the-health-system-in-south-africa-actions-to-secure-the-right-to-health-in-south-africa.html.

17. Coovadia H, Jewkes R, Barron P, Sanders D, McIntyre D. The health and health system of South Africa: historical roots of current public health challenges. Lancet. 2009;374(9692):817-34.

18. Mooney G, Mclntyre DE. South Africa: a 21st century apartheid in health and health care? MJA. 2008;189(11/12):637-40.

19. Benatar SR. The challenges of health disparities in South Africa. S Afr Med J. 2013;103(3):154-5.

20. de-Graft Aikins A, Kushitor M, Koram K, Gyamfi S, Ogedegbe G. Chronic non-communicable diseases and the challenge of universal health coverage: insights from community-based cardiovascular disease research in urban poor communities in Accra, Ghana. BMC Public Health. 2014;14 Suppl 2:S3.

21. Republic of South Africa. National Health Insurance for South Africa: towards universal health coverage (Version 40). Department of Health; 2015. Available from: https://www.health-e.org.za/wp-

45

content/uploads/2015/12/National-Health-Insurance-for-South-Africa-White-Paper.pdf

22. World Health Organization. Monitoring the bulding blocks of health systems: a handbook of indicators and their measurement strategies. Geneva: World Health Organization; 2010.

23. Asmall S, Mahomed O. Integrated chronic diseases management manual. National Department of Health of South Africa. 2011 [cited 10 June 2014]. Available from: http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf.

24. Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract. 1998;1(1):2-4.

25. Republic of South Africa. Strategic Plan for the Prevention and Control of Non-Communicable Diseases. Department of Health; 2013 [cited 30 May 2014]. Available from: http://www.health-e.org.za/wp-content/uploads/2013/09/NCDs-STRAT-PLAN-CONTENT-8-april-proof.pdf.

26. Republic of South Africa. Tobacco Products Control Act (Act 83 of 1993), Government Gazette. 1993;337(14916).

27. Republic of South Africa. Tobacco Products Amendment Act (Act 12 of 1999). Government Gazette. 1999;406(19926)..

28. Republic of South Africa. Tobacco Products Amendment Act (Act 23 of 2007). Government Gazette. 2008;5i2(30821).

29. Tobacco Products Control Amendment Act, 2008 (Act 63 of 2008), Government Gazette. 2008; 523(31790).

30. Puoane T, Tsolekile L, Sanders D, Parker W. Chronic non-communicable diseases In: Barron P, Roma-Reardon J, editors. South African Health Review 2008. Durban: Health Systems Trust; 2008. p. 73-87.

31. Republic of South Africa. Liquor Act, 2003 (Act 59 of 2003). Government Gazette. 2004; 466(26294).

32. Liquor Products Amendment Act, 2008 (Act 32 of 2008). Government Gazette. 2008; 521(31637).

33. Yach D, Hawkes C, Gould CL, Hofman KJ. The global burden of chronic diseases: overcoming impediments to prevention and control. JAMA. 2004;291(21):2616-22.

34. Vorster H, Badham JB, Venter CS. An introduction to the revised food-based dietary guidelines for South Africa. S Afr J Clin Nutr. 2013;26(3):S1-S164.

35. Maimela E, Van Geertruyden JP, Alberts M, Modjadji SE, Meulemans H, Fraeyman J, et al. The perceptions and perspectives of patients and health care providers on chronic diseases management in rural South Africa: a qualitative study. BMC Health Serv Res. 2015;15:143.

36. Street R. Unpacking the new proposed regulations for South Africa Traditional health practiotioners. S Afr Med J. 2016;106(4):325-6.

37. South African Tourism. Traditional healing. [Internet] 2016. Available from: http://www.southafrica.net/za/en/articles/entry/article-southafrica.net-traditional-healing1.

46

38. Nkosi B. Understanding and exploring illness and disease in the South Africa: a medical anthropology context. Int J Humanit Soc Sci. 2012;2(24):84-93.


40. Herselman S. 'Health care through a cultural lens': insights from medical anthropology. Curr Allergy Clin Im. 2007;20(2):62-5.

41. Bress J. Developing a framework to identify and respond to health literacy needs using community-based emergency first aid responders in the Lavender Hill. MSc dissertation, University of Cape Town; 2014.

42. Schrauben SJ, Wiebe DJ. Health literacy assessment in developing countries: a case study in Zambia. Health Promot Int. 2015 Dec 10. [Epub ahead of print].

43. Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12:80.

44. Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, et al. Association of health literacy with diabetes outcomes. JAMA. 2002;288(4):475-82.

45. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97-107.

46. Mokwena K. Strategies to increase the health literacy needed to complement health-promoting legislation in South Africa. S Afr J Clin Nutr. 2015;28(4):197.

47. Statistics South Africa. Statistical release (Revised) p0301.4. Census 2011. [Internet] 2012. Available from: http://www.statssa.gov.za/publications/P03014/P030142011.pdf.

48. Show me. Pretoria Township Tours [Internet] 2009 [cited 20 September 2016]. Available from: http://showme.co.za/pretoria/tourism/pretoria-townships/.

49. Marsiglia FF, Booth JM. Cultural adaptation of interventions in real practice settings. Res Soc Work Pract. 2015;25(4):423-32.

47

CHAPTER 3: Systematic Review

Type 2 diabetes self-management education

programs in high and low mortality developing

countries: A systematic review

Published as:

Dube L, Van den Broucke S, Housiaux M, D’Hoore W, Rendall-Mkosi K. Type 2

diabetes self-management education programs in high and low mortality

developing countries: A systematic review. Diabetes Educator, 2015: 41(1), 69–

85. doi: 10.1177/0145721714558305.

48

Abstract

Purpose: Although self-management education is a key factor in the care for

diabetes patients, its implementation in developing countries is not well

documented. This systematic review considers the published literature on diabetes

self-management education in high and low mortality developing countries. The

aim is to provide a state of the art of current practices, assess program outcomes,

cultural sensitivity and accessibility to low literate patients.

Methods: The Cochrane Library, PubMed, MEDLINE, PsycInfo and PsycArticles

databases were searched for peer-reviewed articles on Type 2 diabetes published

in English between 2009 and 2013. The World Bank and WHO burden of disease

criteria were applied to distinguish between developing countries with high and low

mortality. Information was extracted using a validated checklist.

Results: Three reviews and 23 primary studies were identified, 18 of which were

from low mortality developing countries. Studies from high mortality countries were

mostly quasi-experimental, those from low mortality countries experimental.

Interventions were generally effective on behavior change and patients’ glycemic

control in the short term (≤9 months). While 57% of the studies mentioned cultural

tailoring of interventions, only 17% reported on training of providers, and 39% were

designed to be accessible for people with low literacy.

Conclusions: The limited studies available suggest that diabetes self-

management education programs in developing countries are effective in the short

term, but must be tailored to conform to the cultural aspects of the target

population.

Keywords: Type 2 diabetes, self-management education, cultural tailoring,

developing countries, knowledge, gaps, effectiveness, systematic review.

49

Introduction

Diabetes mellitus (DM) is one of the most common chronic diseases worldwide.1,2

While until recently it was considered a disease of the affluent, it is increasingly

becoming a burden for developing countries. Approximately 80% of people with

diabetes live in low- and middle-income countries,3 and their number is estimated

to increase by 170% between 2000 and 20254. This makes the anticipated impact

of the condition greater and more damaging in these countries than in more

affluent parts of the world.5

Developing countries face a significant rise in healthcare expenditure due to the

increasing prevalence of diabetes. In many countries, diabetes consumes 5% to

20% of the healthcare budget, and more than 50% of that cost is due to

complications.6 Together with pharmacological treatment, lifestyle changes such as

increased levels of physical activity, a healthier diet, and smoking cessation have

proven useful in altering the course of Type 2 diabetes (T2DM) and delaying the

development of complications.7 Consequently, the education of diabetes patients to

manage their illness and adopt lifestyle practices to prevent complications is widely

recommended, particularly in populations where economic resources are limited.8-

10 As such, diabetes self-management education (DSME) can be considered as a

crucial way to address the diabetes problem in developing countries.

Despite the growing body of literature demonstrating positive effects of DSME,11-15

its implementation in developing countries is a challenging task. Developing

countries are often faced with low levels of education in the adult population,

resource poor environments, and a health system designed to address infectious

diseases, being less well prepared to tackle chronic conditions like diabetes.4 As

the bulk of the literature documenting the effectiveness of DSME concerns

programs that were developed, implemented and evaluated in developed

countries,11,14,16

their direct importance to developing countries with different socio-

cultural and economic conditions is uncertain.

50

Cultural sensitivity of DSME

The challenge of addressing the diabetes epidemic in developing countries could

be partially resolved by using culturally appropriate and context relevant

interventions to delay diabetes and prevent its complications.4 Culture refers to the

behavior patterns, beliefs, arts and all other products of human work and thought,

as expressed in a particular community.17

For diabetes education to be effective in

multi-cultural societies, both the educators and the content of programs should be

culturally sensitive.18

This can be achieved through cultural tailoring, which is

defined as “the process of creating culturally sensitive interventions, often involving

the adaptation of existing materials and programs for racial/ethnic groups”.19

There are two levels of cultural sensitivity: (1) Surface structure involves matching

the intervention materials and messages to observable “superficial” (although

important) characteristics of a target population, such as familiar people, places,

language, music, food and locations; (2) Deep structure requires an understanding

of the cultural, social, historical and psychological forces that influence the target

population. Whereas surface culture only increases the acceptance of programs,

deep cultural factors have more influence on the effectiveness of programs.19

Literacy sensitivity of DSME

Literacy is defined by the United Nations Educational, Scientific and Cultural

organization (UNESCO), as the ability to identify, understand, interpret, create,

communicate and compute, using printed and written materials associated with

varying contexts.20

A challenge to DSME in developing countries is that many

patients with diabetes have low levels of literacy.21-23

Health literacy which is linked

to literacy entails people’s knowledge, motivation and competences to access,

understand, appraise and apply health information in order to make decisions in

everyday life concerning healthcare, disease prevention and health promotion to

maintain or improve quality of life during the life course.24

People with low literacy

understand little (50%) of what is told to them during medical consultations and

they may be embarrassed by their situation and hide their low level of literacy from

51

people who could possibly help (healthcare providers, family members and

friends).21,23

As a result, they have difficulties in managing their medication and

lifestyle. Screening for low literacy and tailoring DSME programs to the level of the

patients through working with communities to develop more accessible educational

materials and interventions can address this problem and enhance program

effectiveness.

DSME in developing countries

In light of the above, it appears that addressing the burden of diabetes in

developing countries requires DSME programs that are culturally and literacy

sensitive.25

To document the extent to which existing DSME programs in

developing countries meet these demands, this systematic review considers the

published literature on DSME in developing countries, looking at cultural sensitivity

and adaptation for low literacy as potential determinants of effectiveness.

To our knowledge, this is the first systematic literature review of DSME programs in

developing countries with a focus on these socio-cultural and literacy aspects. A

recent paper by Rawal et al7 reviewed the evidence for the effectiveness of DSME

in developing countries, but did not consider cultural sensitivity and low literacy.

Moreover, the review only included studies that considered blood glucose or

glycated hemoglobin A1C (A1C) as a primary outcome, thus limiting the review to

seven studies from four countries, all of which are classified as low mortality

countries. However, as the primary goal of DSME is to enable patients to integrate

self-management into their daily lives and adopt a healthier lifestyle, the core

outcomes of DSME are essentially behavioral. Hence, it makes sense to also

include studies in the review that evaluate DSME program effectiveness in terms of

behavioral outcomes, and not only in terms of A1C level changes. In addition, it is

possible that DSME programs are implemented differently in countries with a high

mortality, where the health system is often less well equipped to address chronic

conditions.

52

Therefore, this systematic review aimed to answer the following review questions:

(1) What is the current status of DSME for T2DM in developing countries? and (2)

To what extent are cultural specificity, low literacy and low health literacy

addressed in DSME programs in developing countries?

Methods

The process of conducting and reporting this review was underpinned by the

PRISMA Statement for Systematic Reviews and Meta-Analyses.26

Information sources and search terms

To find existing systematic reviews on DSME programs in developing countries,

the Cochrane Library was first consulted, but no reviews were found focusing

specifically on developing countries. Consequently PubMed, MEDLINE, PsycInfo,

PsycArticles and Google scholar were searched using combinations of the

following search terms: review, diabetes, self-management education, patient

education, programmes / programs, developing countries, Africa, Latin America

and “by country”(only in PubMed). Reference lists from the identified articles were

hand searched for additional relevant articles.

Eligibility criteria

The search was restricted to peer-reviewed articles published in English and with

full text available. The initial search was from 1980 but because of time and

resource constraints it was limited to the period 2009 until 2013 (November 13). To

define developing country status, the World Bank list for developing countries was

used. The WHO burden of disease criteria was applied to distinguish between high

and low mortality countries.27,28

Studies with a full description of the DSME

intervention, from a developing country, and focusing on T2DM or pre-diabetes

were considered for inclusion. Studies on T1DM or mixed T1DM and T2DM,

without a clear indication of the type of DM, gestational DM and whose subjects

were not diabetes patients were excluded. As no primary studies on pre-diabetes

53

were found during the search; this review focuses on T2DM only. All the articles

were selected for inclusion by the first author (LD) and a subsample of the studies

was analyzed for inclusion and exclusion by a second assessor (MH). Assessor

agreement was 100%.

Study selection

Using the abovementioned procedure, 2289 articles were identified (2171 from

electronic databases and 118 from hand search). After applying the inclusion and

exclusion criteria, 28 publications remained, 25 of which were primary articles

(representing 23 studies) and three were reviews (Fig 3.1).

Figure 3.1 Flowchart of the selection process

54

Study quality

Using a validated checklist for measuring study quality29

(question 1-10), 22 articles

were rated as having good quality, one article as fair quality and no articles as poor

quality. Good quality was said to have a score of eight and above. All articles gave

sufficient information about: study aims, outcomes measures, patient selection,

description of intervention, results and statistical details. The main limitations

observed in study quality were lack of reporting of adverse events and no report on

characteristics of patients lost to follow-up.

Data extraction

An analysis of the existing reviews was performed separately. For the analysis of

the DSME programs presented in the primary articles, the authors used a

description tool developed and validated by an international consortium.30

This tool

was developed via a multiple Delphi process for the Global Diabetes Survey

(GDS), which is a global initiative to collect data on diabetes care quality on a

yearly basis.31

It consists of an online wiki-like survey with questions

describing existing educational programs for diabetes and pre-diabetes prevention.

The items used for the purpose of this review include program content,

intervention, strategy, duration, program providers, training of the providers, and

accessibility of the program to patients with low literacy.

Although the primary interest for this systematic review was on health literacy, the

primary studies found do not give information on health literacy but literacy levels.

Due to the fact that there was only one paper on health literacy, the overall literacy

levels of the patients will be discussed in this paper. In addition, program

effectiveness on outcomes and tailoring of the program to the culture (surface and

deep cultural aspects) were assessed. An intervention was said to be culturally

sensitive (surface structure) if it was delivered in the local language, if local foods,

symbols, objects were used and if local guidelines or country guidelines were

incorporated in the design of the intervention. Deep structure was assessed as

needs assessment, an understanding of cultural history, values and norms and

55

incorporating this knowledge in the design of the program.19

Data were

summarized in tables and missing data according to the description tool were

reported as “not reported” (NR).

Data extraction from the selected articles was done by the first author. A

subsample of the articles was also evaluated by a second assessor, yielding an

assessor agreement of 95%. The assessors then discussed the differences and

consensus was reached (100%).

Results

Existing reviews

Three reviews evaluated the published literature on DSME programs in low

mortality developing countries. The first review included 7 articles on DSME

programs from 4 countries. Of these seven studies, 4 were concerned with

prevention of complications in T2DM, and 3 were focused on prevention of the

development of T2DM. While considering lifestyle and other non-pharmacological

interventions to prevent T2DM and its complications, this review only included

studies with blood glucose measure or A1C as a primary outcome.7 The main

conclusion was that the reasonably consistent and positive results are significantly

limited by the small number of studies.

The second was a systematic review of 18 reports on DSME in Iran, published

between 2002 and 2008.32

Of these 18 studies, 11 were studies on T2DM, 4 were

T1DM, 1 was mixed T1DM and T2DM and in 2 studies, the type of DM was

unknown. Whereas the interventions seemed to have a positive effect on

knowledge, self-monitoring of blood glucose and glycemic control, the review

concluded that the findings were insufficient and too conflicting to draw firm

conclusions.

The third review gave a summary of the literature on DSME in mainland China,

involving 34 studies published between 1989 and 2008.33

Of these 34 studies, 18

56

were on T2DM, 6 were on mixed T1DM and T2DM, 1 was on Gestational DM, and

in 9 studies, the type of diabetes was not mentioned. Only interventions with a

duration of at least 3 months, and involving A1C and/or behavior change as

outcome measures were included. This led to the conclusion that DSME programs

in China have positive effects on the patient’s knowledge and glycemic control, but

that the effects on behavior change and on cardiovascular risks were variable.

Long-term effects of the programs on quality of life and on medical complications

were not assessed.

Study characteristics of identified studies

Of the 23 original studies that were identified in the 25 publications, 18 (78%) were

from low mortality developing countries (Iran,23,34-41

Argentina,42,43

Turkey,44,45

South Korea,46

China,47,48

Malaysia49

and a combination of 27 selected developing

countries50,51

); five were from two high mortality developing countries (South

Africa52-54

and India55-57

) (Tables 3.1 and 3.2). Most studies from low mortality

developing countries were experimental and, except for one, those from high

mortality developing countries were quasi experimental (Tables 3.1 and 3.2). A

third of the studies (35%), only one being from high mortality developing countries,

referred to theories of behavior change as a theoretical basis for the interventions.

Sample sizes ranged from 62 to 11,384 participants.

The professional background of the educators who provided the interventions

varied across studies (reported in only eighteen studies) with nurses in 8/18 as the

most common providers, followed by physicians/doctors 7/18, dietitians/nutritionists

5/18 and community support workers or health promoters 2/18. Only 4/18 studies

reported using trained diabetes educators. The content of the educational

interventions was comprehensive in most interventions, covering almost all the

topics of diabetes education including basic knowledge of diabetes, diet, exercise,

self-monitoring blood glucose, medication taking, reducing risks, problem solving

and living with diabetes.

57

Table 3.1 Study characteristics for *T2DM in low mortality developing countries (n=18)

Reference Country Study objective Design Inclusion criteria Sample Duration

Negarandeh et al

23

Iran Explore the impact of pictorial image and teach back educational strategies on knowledge, adherence to medication and diet among patients with T2DM and low health literacy.

*RCT >6 months duration of diabetes Low health literacy (59 or lower on *TOFHLA), 18 years or older Absence of mental, visual or learning abilities Former participation in diabetes education research projects

135 9 weeks

Aliha, et al34

Iran Evaluate the effects of diabetes self-care group education and nurse- telephone follow-up on glycemic control and compliance with treatment orders in patients with T2DM attending to diabetes clinic

RCT Informed consent, access to telephone Lack of difficulty in speech, hearing and vision Absence of disease associated with physical & mental illness, excluded if admitted during study, changing treatment protocol or developing complications.

62 3 months

Samadi, et al

39

Iran Determine the effect of quality of life education on self-concept of patients with T2DM.

RCT ˃30years old, Cognitive ability to answer questions and consent given Excluded if with prior *DSME within 1 year or having complications.

123 3 months

Bayat, et al35

Iran Assess the effectiveness of educational intervention based on extended health belief model on T2DM patients

RCT Being able to read and write T2DM diagnosis by specialist

120 6 months

58


Farsaei, et al

36

Iran Evaluate the effect of a clinical pharmacist-led patient education program for T2DM patients

RCT With uncontrolled T2DM ˃7% Able to read and write

Were in suitable therapeutic condition Excluded if confused, unable to communicate verbally, or reached <7% during 1

st month

172 3 months

Sharifirad, et al

40

Iran Determine the effectiveness of the HBM on nutrition education in T2DM patients.

Semi-experimental study

30-60years, not to be illiterate At least 1 year attendance in Iranian Diabetes Association seminars, regulars follow-ups, No severe and chronic complication of diabetes

88 NR (only 1 month follow-up)

Hazavehei, et al

37

Iran Determine the effects of educational program based on the Belief, Attitude, Subjective Norm, and Enabling Factors (BASNEF) Model on eye care among patients with insulin independent diabetes mellitus.

Experimental study

40-60 years, 5 year duration of diabetes Exposed to danger of ocular complications

Excluded if diagnosed with ocular or cardiac complications

100 4 months

Kashfi, et al38

Iran Evaluate the effect of educational program and jogging based on HBM on sugar control in type 2 patients

prospective quasi- experimental interventional study

Without diabetes foot and cardiovascular side effects

100 3 months

Vatankhah,et al

41

Iran Evaluate the impact of a simple educational program on the knowledge and practice of people with T2DM in relation to the foot at risk

NR Excluded if unable to answer questionnaire due to dementia, psychosis or profound deafness

148 9 months (6months follow-up)

59


Gagliardino, et al

42

Argentina

Implement an educational program in 10 Latin American countries and to evaluate its effect on the clinical, biochemical, and therapeutic aspects as well as the economic cost of diabetes

Randomized 2x2 design

At least 2 years duration of diabetes, between 25-75 years old, excluded if *T1DM, with severe complications, alcohol or drug addiction or inability to self-care

468 42 months

Perman, et al

43

Argentina

Compare the all-cause mortality rate in elderly T2DM patients who attended self-management educational workshops compared with those who did not.

Retrospective cohort study

Diagnosis of T2DM b4 Dec 31 2003 ≥65 at Jan 1 2001 Remain an affiliate of the health plan at least for 1 year after recruitment

1730 6 years

Atak, et al44

Turkey Evaluate the effect of patient education on knowledge, self-management behaviors and self-efficacy in patients with T2DM

RCT Had attended at least 1 follow-up visit Able to give informed consent

80 1 month

Karakurt,et al

45

Turkey Determine the effect of education given to patients with T2DM mellitus on self-care

Pre-post-test experimental design

At least 6 months of *DM duration, being Literate, no serious complications , No psychiatric history volunteer to participate

100 9 months

Song, et al46

South Korea

Investigate the effects of a diabetes outpatient intensive management program (DOIMP) on A1C levels and adherence to control recommendations.

Randomized 2 group pre-post-test experimental design

Able to perform *SMBG Take oral hypoglycemic agents (OHAs) Understand the study goals

Excluded if with complications

59 3 months

60


Shi, et al48

China Examine the effect of a hospital-based clinic intervention on glycemic control self-efficacy and glycemic control behavior of Chinese patients with T2DM

RCT At least 1 year diagnosis Able to communicate, verbally, read & write in mandarin Willing to participate

No previous DSME

Excluded if <30, with type 1 or gestational diabetes or with complications.

157 5 months

Liu, et al47

China Develop a Chinese diabetes group visit program and to examine its effectiveness on self-management behavior, self-efficacy and health status for patients with T2DM

RCT Aged 35-80years Excluded if outside the age range or with -complications or physical disability

208 12 months

Al-haddad,et al

49

Malaysia Measure the effectiveness of two different diabetes educational programs (less structured vs. structured).

Prospective observational Study

T2DM patients Able to communicate in Malaysian National language

74 8 months

Gagliardino,et al

50,51

27 devel-oping coun-tries

Evaluate the impact of diabetes education provided to patients with T2DM in non-controlled studies (real-world conditions) on quality of care, resource consumption and conditions of employment.

Cross Sectional & longitudinal Survey

Excluded if with active participation in a clinical study or recent short-term insulin treatment

11 384 9 months

* T2DM = Type 2 diabetes mellitus, RCT = Randomized controlled trial, TOFHLA = Test of functional health literacy in adults, DSME = diabetes self-management education, T1DM = type 1 diabetes mellitus, DM = diabetes mellitus, SMBG = self-monitoring blood glucose, HBM = Health Belief Model, NR = Not reported

61

Table 3.2 Study characteristics for *T2DM in high mortality developing countries (n=5)


van der Does, et al

54

South Africa

Evaluate the Take Five School (TFS) group education program for patients with T2DM in South Africa.

Mixed methods -Pre-post test

*NR 84 1 month

Price, et al52,53

South Africa

Determine the long-term (4 years) glycemic outcome of a structured nurse-led intervention program for T2DM patients in rural Africa.

Cohort study NR 320 4 years

Mahant56

India Evaluate the impact of a model program of diabetes on diabetes control.

Prospective study

All included without bias for gender, age, duration of disease, severity or educational status.

1050 3 years

Mahajan, et al

55

India Improve the health and blood sugar control in T2DM by giving health education, dietary advice and encouraging them for regular blood sugar monitoring and physical exercise.

Cross-Sectional

˃40years old 300 12 months

Malathy, et al

57

India Assess the baseline levels of knowledge, attitude and practices of diabetes patients visiting two multispecialty hospitals and one private diabetes clinic regarding disease management.

*RCT ˃30years old Excluded pediatric & pregnant patients.

207 9 months

* T2DM = Type 2 diabetes mellitus, NR = Not reported, RCT = Randomized controlled trial

62

Intervention characteristics

In low mortality developing countries, the reported interventions were mostly

delivered in groups (12 of 18 studies). Three studies used a telephone follow-up.

Four interventions used face to face individual sessions and one of these included

a telephone follow-up while two interventions used both group and individual

delivery strategy (Table 3.3). Sixteen of the studies in low mortality countries were

12 months or less in duration and only two studies had duration of 42 months and

6 years (Table 3.1). Eight studies provided written literature to the intervention

group to supplement the educational sessions. Forms of teaching differed across

the interventions and included lectures, group discussions, question and answer

sessions. A few interventions used film demonstrations, illustrative materials and

role plays.

In high mortality developing countries, two interventions were delivered in groups,

two individually, and one using a combination of group and individual sessions.

Education formats included discussions, individual counseling, and providing

written literature to supplement the sessions. Only two studies had duration of

more than 1 year (Tables 3.2 and 3.4).

Tailoring to culture

Thirteen studies (57%) from both high and low mortality developing countries

reported aspects of cultural sensitivity. Nine of these studies reported programs

that were using the local language and incorporating the existing materials and

local guidelines. Two studies from low mortality countries required speaking and

understanding the local language as inclusion criteria for the program. Another

nine studies required information on needs assessment of the target population

before designing the intervention program. Two of these studies were from high

mortality countries. All the studies from high mortality countries, except one, were

accessible to people with low levels of literacy. Four studies from low mortality

countries reported access to people with low literacy; five studies reported

63

programs that excluded patients with low literacy. Other studies did not report on

this issue (Tables 3.1 and 3.2).

Outcome measures

Different outcomes were measured across studies. The most commonly measured

(in 70% of the studies) was behavior change (e.g. diet, physical exercise, self-

monitoring of blood glucose (SMBG)). A1C was measured in less than half of the

studies (49%). Other outcome measures included knowledge and other individual

dispositions, fasting blood sugar (FBS), body mass index (BMI), lipid profiles- and

psychological states (Table 3 and 4).

Effectiveness of DSME interventions

Nearly all the identified studies indicated a significant difference on outcome

measures between the intervention group and the control group or from pre-test to

post-test. Six studies (26%) did not find a significant difference between

intervention and control groups or from pre-test to post-test on some of the

outcomes measured, which included knowledge, psychological state, behavior and

BMI. The change in A1C was significant in all the studies where this indicator was

used as an outcome measure. In most studies, effectiveness of the interventions

was only considered at short-term follow-up. Four studies measured follow up over

a longer period, but in one of them (with a 6 year follow-up) it was not clear

whether the improvement was an effect of the intervention or of other factors. In the

other study, with a 4 year follow-up, glycemic slippage was observed over time,

indicating less impact at longer term follow-up.

64

Table 3.3 DSME Intervention/programs characteristics for *T2DM in low mortality developing countries

Reference Intervention for T2DM Provider Provider training

Theoretical model

Measures Main outcomes Comments

Negarandeh, et al

23

Two interventions and 1 control. Group. 1: Three weekly individual teach back sessions each lasting 20miutes. Group 2: Three weekly individual pictorial image sessions each lasting 20minutes. Control Group: received usual care-presentation of an educational brochure on diabetes control

Community health nurse

*NR NR -Level of health functional literacy Diabetes knowledge

-Adherence to medication and diet

Statistically significant differences (P<0.05) between intervention and control

The intervention was effective all measures were significant in both intervention groups than controls.

65


Theoretical model


Aliha, et al34

Two group educational sessions for 60 minutes in 2 consecutive days using face to face lectures and film demonstration and 16 follow-up telephone calls by nurse (1st month 2 calls per week and 2nd and 3rd months 1 call per week) + booklet. Control group: Conventional care and usual education for diabetes patients

Diabetes nurse

YES NR *FBS *A1C

Blood glucose 2hours after meals Blood Sugar (2hppBS) Adherence to treatment

FBS, *2hppBS, A1C were statistically significant. Adherence increased from 6.5% to 90.3% in intervention group while in control it decreased from 12.5% to 0%.

The intervention was effective, in all measures there was a significant difference in intervention than control group.

Samadi, et al

39

Eight weekly face to face group quality of life educational sessions for 90 minutes + hand-out and 1 month telephone follow-up Control Group: received hand-out + education after follow-up.

Nurse, physiotherapist, nutritionist, orthopedist, psychologist

NR NR Self-concept Self-esteem

Body image

*BMI

BMI was statistically significant P=0.004. Increased self-esteem and self-concept.

Intervention was effective, significant differences in all outcomes were observed in the case than control group after intervention.

66


Theoretical model


Bayat, et al

35

Two 30-40 minutes individual face to face lectures via pamphlets and question and answer method + telephone follow-up. Follow-up at 3 and 6 months

NR NR *HBM HBM constructs Self-efficacy

At 3 and 6 months follow-up

Significant impact P<0.0001on extended HBM constructs.

The intervention showed a positive and significant impact on extended health model belief constructs. However, perceived susceptibility and self-efficacy remained constant at 6 months

Farsaei, et al

36

Two group pharmacist-led educational sessions and weekly telephone follow-up and appointments for 3 months Control group: general education by nursing staff.

Pharmacist NR NR A1C FBS

A1C decreased significantly in intervention than control (p<0.001)

Intervention was effective. Glycemic control was significantly decreased in intervention than groups

67


Theoretical model


Sharifirad, et al

40

Four group sessions each lasting 40 minutes + One month follow-up.

NR NR HBM Nutritional knowledge HBM Constructs

Nutritional practice Weight, *BMI, FBS

Statistically significant results (P<0.001) in intervention compared to control group in knowledge and perceived susceptibility. Behavior increased significantly (P<0.001) in intervention than in control.

Intervention significantly improved knowledge scores, and FBS compared to the control group but perceived severity, threat and benefits remained the same.

Hazavehei, et al

37

Six group educational sessions using lectures, question and answer and group discussions, each session lasting 55-60 minutes over 1 month + 3 month follow-up

NR NR *BASNEF Model

*BASNEF Model components A1C

FBS

Eye care practice

A1C decreased significantly (P<0.001).

The BASNEF Model components, knowledge and all other outcomes were significantly improved in the intervention group compared to the control group after follow-up.

68


Theoretical model


Kashfi, et al

38

3 sessions (each 60 minutes) of training on jogging and control of sugar + 3 months follow-up.

NR NR

HBM HBM constructs Practices

A1C FBS

A1C decreased significantly (P<0.001).

Intervention was effective; all outcomes were significant in case than in control group after intervention.

Vatankhah, et al

41

Single 20minute individual face-to-face foot education session + Booklet and follow up after 6 months.

NR NR NR Knowledge Foot care practice

Improved knowledge and practice about diabetes foot care (p<0.0001 and P=0.011)

Intervention effective in increasing knowledge and practice scores significantly.

Gagliardino, et al

42

Group structured educational courses: Group 1: Control Group 2: Physician education only Group 3: Patient education only

Group 4: Patient and physician education Four weekly 90-120 minutes teaching sessions using illustrative materials + program book and a reinforcement session at 6 months.

Trained educators

YES NR A1C Lipid profile and *BP

Psychological state

A1C decreased significantly (p<0.05) at 42 months. Largest decrease in groups where patients and physicians were educated.

All outcomes measures were significant in case groups being largest in combined programs after intervention but psychological state was significant in both groups

69


Theoretical model


Perman, et al

43

Four group education workshops for 2 hours per year and individual counseling on non-pharmacological treatment by physician assistants and follow- up through mails and delivery of educational material. Other “informal” education also available.

Diabetes educators (family physicians/endocrinologists)

YES Patient Empowerment Model

All-cause mortality Crude hazard ratio after adjustment was decreased from 33% to 18% (HR 0.82; 95%CI:0.61-1.08).

Workshop attendants had 33% lower all-cause mortality rate at 6 years of follow-up but impact of intervention not clear.

Atak, et al44

Two weekly group question-based patient centered sessions each lasting 45 minutes.

Researcher NR NR Knowledge self-reported self-management

Significant differences in self-reported self-management between case and control groups, p values <0.05.

Limited effect on knowledge and behavior but significant on self-efficacy.

70


Theoretical model


Karakurt, et al

45

Individual narrative, question and answer educational sessions, each lasting 45-60 minutes. Education repeated twice every other month + booklet.

Researcher NR NR Self-care activities Metabolic control A1C

Lipid profile

A1C decreased significantly (p<0.001) from pre-test to post-test. Triglycerides were statistically significant (p<0.05) after intervention.

Only high density lipoproteins, BMI and Waist circumference were not statistically significant after intervention.

Song, et al46

2 day group and individual educational sessions + weekly telephone counseling. Patients free to call nurse at any time.

Endocrinologist, Nurse, physician, rehabilitation therapist, Dietitian, dermatologist, psychologist, pharmacist, ophthalmologist, physiotherapist

NR NR A1C Adherence to diet

A1C significantly decreased (p<0.05) in intervention group after the intervention. Significant difference in adherence (p=0.0001) was also observed in intervention after intervention.

Significant differences were observed overtime in A1C and Adherence to diet in intervention than control.

71


Theoretical model


Shi, et al48

Group education, with 4 weekly sessions, 1-2hours per session for a month using discussions, videos, demonstrations, role plays and written literature. Telephone follow up, 2 calls each week, each 5-15 minutes for 4 months.

Researcher

NR Health Educational Strategies and Self-efficacy theory

Glycemic control self-efficacy Glycemic control behavior

Statistically significant improvements in Glycemic control self-efficacy and Glycemic control behavior (p<0.05) in experimental group compared to control group.

Intervention showed statistically significant improvement in glycemic control self-efficacy and glycemic control behavior immediately and four months after the intervention

Liu, et al47

12 monthly interactive group sessions lasting 90 minutes + I hour for individual consultation.

General practitioner Nurse Preventive doctor

YES The Cooperative Health Care Clinic Model

Behaviors Self-efficacy

Health status

Significant differences in behavior change (p<0.05) in case compared to control group.

Significant increase in self-efficacy and measures of illness. On average intervention group increased their exercise duration.

72


Theoretical model


Al-haddad, et al

49

Group based monthly less structured versus structured teaching sessions each lasting 90-120 minutes for 4 months. Patient could call the researcher at any time.

Pharmacists Doctor Nurse

NR NR A1C BMI BP

A1C significantly decreased (p=0.004) in the structured group than in the less structured group.

Significantly increase in A1C levels was observed in the less structured group while significantly reduced in the structured group. BMI and Diastolic BP were not significant.

Gagliardino, et al

50,51

Face to face consultation and referral to ad hoc structured group education programs with different degrees of complexity and number of sessions and a 9 month longitudinal follow-up.

Nurse Dietitian Educator

NR NR Clinical- weight, height, *WC, BP, Foot Evaluation. Metabolic- A1C, lipid profile

A1C control significantly higher in case group.

Intervention significantly improved the percentage of patients achieving target values set by international guidelines.

*T2DM = type 2 diabetes mellitus, NR = Not reported, A1C = Glycated hemoglobin, FBS = Fasting blood glucose,

2hppBS = 2 hour after meals blood sugar, BMI = Body mass index, HBM = Health belief model, BASNEF = Belief, Attitude, Subjective Norm, and

Enabling Factors, BP = Blood pressure, WC = Waist circumference

73

Table 3.4 DSME Intervention/programs characteristics for *T2DM in high mortality developing countries


Theoretical model


van der Does, et al

54

Weekly group education classes, each lasting 60 minutes for 4 weeks

Dietitian Heath Promoter Doctor

*NR NR Self-care activities

No statistically significant reduction in smoking (p=0.08)

Intervention was effective in improving adherence to a diabetes diet, physical activity, foot care and the perceived ability to teach others was seen but no significant change in smoking or adherence to medication was noticed

Price, et al

52,53

Structured group nurse-led diabetes care 3 monthly group sessions using picture based flip-charts + booklet and reinforcements per each clinic visit for 4 years.

Nurses Community support workers

NR Empowerment theory

*BMI *A1C

A1C decreased significantly compared to baseline at 6 and 18 and 24 months (P<0.001) and at 48 months it was (p=0.015)

There was significant improvement in A1C up to 18 months follow-up, but thereafter BMI was no longer significant and there was glycemic slippage.

74


Theoretical model


Mahant56

30 minute counseling at 6 months visit for 3 years + booklet in Hindi

physician NR NR Knowledge practices Attitudes, blood glucose level A1C

A1C and blood glucose level decreased significantly (P<0.05).

The intervention was effective especially in monitoring of blood and urine glucose test and knowledge about hypoglycemia.

Mahajan, et al

55

Monthly 45-minute group education and individual consultations + comprehensive medical treatment, eye care and monitoring of blood sugar.

Dietitian Doctors

NR NR Life style Self-care practices Illness perception Glycemic status BMI

Significant improvements in lifestyle, self-care practices, illness perception and glycemic status

Intervention was effective in improving outcome measures

Malathy, et al

57

Monthly counseling sessions each lasting 20-25 minutes for 3 months + hand-outs

Pharmacist

NR NR Knowledge, Attitude, Practices (KAP), Post Prandial Blood Glucose, Lipid profile

*KAP scores of test patients improved significantly (p<0.0001)

Intervention proved to be effective

*T2DM = Type 2 diabetes mellitus, NR = Not reported, BMI = body mass index, A1C = Glycated hemoglobin, KAP = knowledge, attitude and practices

75

Discussion

The limited studies available suggest that DSME programs in developing countries

have positive effects on A1C, knowledge, glycemic control and behavioral

outcomes on short term follow-up. This finding is consistent with existing literature

which reports a positive impact on glycemic control after the delivery of

interventions in developing and developed countries.7,11-16

Despite these positive results, the review also identified shortcomings in the DSME

programs. Most interventions were provided by a range of health professionals.

While this suggests progress in the provision of DSME, it is quite clear that

developing countries are not equipped for this kind of implementation due to the

shortage of health care professionals, especially in rural areas.58

Therefore it is

advisable that where there is not enough professional capacity, peers and

community health workers can be trained to provide DSME while professional staff

like nurses can be wisely used in supervisory and training roles for the non-

professionals in these resource poor settings. This strategy has proven to be

effective.16,59-62

Only a few studies in the current review reported on the training of the providers.

This finding is consistent with the findings of the review by Lou et al, who found that

of the 34 studies reviewed from China, not a single study mentioned training of

providers.33

Without training of providers, the quality of a DSME program cannot be

guaranteed, since the information provided to patients is not adapted to the needs

of the particular target group.

Furthermore, few studies reported on accessibility of the intervention by patients

with low literacy levels. People with diabetes and low literacy are more likely to

have poor glycemic control, find it difficult to read food labels, estimate portion

sizes and therefore have low self-confidence in management of diabetes.23,63,64

In

previous studies, the use of pictorial aid and teach back strategies have been

76

shown to enhance the comprehension and recall, and adherence for people with

low literacy levels.65,66

Only a few interventions included in this review were guided by behavior change

theories yet interventions supported by a theoretical framework have been found to

have positive results on the participants.35

In addition, significant improvement still

needs to be effected with regard to the strength and rigor of the study designs used

in the interventions.

Our review suggests that DSME interventions in developing countries address the

surface cultural aspects such as language tailoring of reading materials. However,

deep cultural factors were rarely reported. The results are similar to other reviews

reporting that most interventions focus on surface structures of culture while

ignoring its deep structures.58

Rawal et al suggest that developing linguistically

appropriate and context-specific lifestyle interventions that are tailored to the

cultural, religious and socio-economic needs of the target population will enhance

the sustainability of the interventions.7

Studies from both low and high mortality developing countries differed in many

ways. There were more studies in the low mortality countries than in the high

mortality countries, implying that very little research on the topic is being done in

high mortality developing countries. Most interventions from high mortality

countries were culturally sensitive and were accessible to people with lower levels

of literacy, but did not report on provider training. Most importantly, of the entire

interventions only one from a high mortality developing country used community

support workers as providers in addition to nurses.

Limitations

There are a number of limitations of this review that should be mentioned. Firstly, it

included only studies published in peer reviewed, English journals from 2009 to

2013, thus excluding useful information which may not have been peer reviewed,

may be in other languages, published before 2009 or unpublished studies.

77

Secondly, the results of this review may also have been affected by publication

bias, in that only studies with positive results were published and those with

negative results were unavailable or unpublished. Despite these limitations,

however, we believe that the review provides a clear state of the art that may

inform DSME educators in developing countries.

Conclusion

DSME programs have been shown to be effective in these limited numbers of

studies from low and high mortality developing countries, especially on short-term

follow-up. However, there are several gaps that need to be addressed if programs

are to be sustainable. Guiding programs by behavior change theories, training

professional and non-professional providers (community health workers, health

promoters, peer support leaders), addressing the cultural sensitivity of programs,

and making them more accessible to people with low literacy. These gaps if

addressed could enhance the effectiveness of DSME programs in developing

countries.

As such, the findings of this review have important implications for diabetes

education in developing countries. Since diabetes continues to affect millions of

people in developing countries, it is imperative that health workers providing

education in developing countries continue to examine the sustainability and

effectiveness of interventions by tailoring them to the culture and literacy levels of

the target population. Many techniques can be used to address the burden of low

literacy, such as the use of pictures and teach back techniques which have

previously been proved successful.23,65,66

In addition, as professional staff should

be wisely used in resource poor settings, trained non-professionals can be included

to provide diabetes education with professional staff assuming a supervisory and

training role.

78

References

1. IDF. Position statement: Self-management education. 2011; http://www.idf.org. Accessed 16 October, 2013.

2. Pal K, Eastwood SV, Michie S, et al. Computer-based diabetes self-management interventions for adults with type 2 diabetes mellitus. Cochrane Database Syst Rev. 2013;3:Cd008776.

3. IDF. International Diabetes Federation Atlas. 2013; http://www.idf.org/diabetesatlas. Accessed 16 October, 2013.

4. Debussche X, Balcou-Debussche M, Besancon S, Traore S. Challenges to diabetes self-management in developing countries. Diabetes voice. 2009;54:12-14.

5. Paz-Pacheco E. Diabetes self management education: an effective response to the increasing burden in underserved communities. Diabetes voice. 2011;56(1):10-13.

6. WHO. Diabetes action now: An imitative of the World Health Organisation and the International Diabetes Federation. 2004; www.who.int/diabetes. Accessed 16 October, 2013.

7. Rawal LB, Tapp RJ, Williams ED, Chan C, Yasin S, Oldenburg B. Prevention of type 2 diabetes and its complications in developing countries: a review. Int J Behav Med. Jun 2012;19(2):121-133.

8. Ezenwaka C, Eckel J. Prevention of diabetes complications in developing countries: time to intensify self-management education. Arch Physiol Biochem. Dec 2011;117(5):251-253.

9. Funnell MM, Brown TL, Childs BP, et al. National standards for diabetes self-management education. Diabetes Care. Jan 2012;35 Suppl 1:S101-108.

10. AADE. Diabetes Education. 2013; www.diabeteseducator.org/export/sites/aade/_resources/pdf/Diabetes_Education_Definition.pdf. . Accessed 25 January, 2014.

11. Clement S. Diabetes self-management education. Diabetes Care. Aug 1995;18(8):1204-1214.

12. Norris SL, Engelgau MM, Narayan KM. Effectiveness of self-management training in type 2 diabetes: a systematic review of randomized controlled trials. Diabetes Care. Mar 2001;24(3):561-587.

13. Norris SL, Lau J, Smith SJ, Schmid CH, Engelgau MM. Self-management education for adults with type 2 diabetes: a meta-analysis of the effect on glycemic control. Diabetes Care. Jul 2002;25(7):1159-1171.

14. Steed L, Cooke D, Newman S. A systematic review of psychosocial outcomes following education, self-management and psychological interventions in diabetes mellitus. Patient Educ Couns. Sep 2003;51(1):5-15.

15. Deakin T, McShane CE, Cade JE, Williams RD. Group based training for self-management strategies in people with type 2 diabetes mellitus. Cochrane Database Syst Rev. 2005(2):Cd003417.

16. Clark M. Diabetes self-management education: a review of published studies. Prim Care Diabetes. Sep 2008;2(3):113-120.

79

17. Caballero AE. Diabetes in the Hispanic or Latino population: genes, environment, culture, and more. Curr Diab Rep. Jun 2005;5(3):217-225.

18. Millan-Ferro A, Caballero E. Role of Culture and Health Literacy in Diabetes Self-Management and Education. In: Weinger K, Carver C, eds. Educating your patient with diabetes. New York: Human Press; 2009.

19. AADE. Cultural sensitivity and diabetes education. Diabetes Educ. Jan-Feb 2012;38(1):137-141.

20. The Plurality of literacy and its implications for policy and programs. UNESCO Education Sector Position Paper. Paris.2004:13.

21. Boren SA. A review of health literacy and diabetes: opportunities for technology. J Diabetes Sci Technol. Jan 2009;3(1):202-209.

22. Habib SS, Aslam M. Risk factors, knowledge and health status in diabetic patients. Saudi Med J. Nov 2003;24(11):1219-1224.

23. Negarandeh R, Mahmoodi H, Noktehdan H, Heshmat R, Shakibazadeh E. Teach back and pictorial image educational strategies on knowledge about diabetes and medication/dietary adherence among low health literate patients with type 2 diabetes. Prim Care Diabetes. Jul 2013;7(2):111-118.

24. Sorensen K, Van den Broucke S, Fullam J, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12:80.

25. Muchiri J, Gericke G, Rheeder P. Needs and preferences for nutrition education of type 2 diabetic adults in a resource-limited setting in South Africa. Health SA Gesondheid. 2012;17(1):1-13.

26. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. Aug 18 2009;151(4):264-269, w264.

27. How we classify countries. 2013; http://data.worldbank.org/about/country-classifications. Accessed 15 October, 2013.

28. WHO. List of member states by WHO region and mortality stratum. 2013; http://www.who.int/mental_health/neurology/annexes_neuro_disorders_public_h_challenges.pdf. Accessed 09 December, 2013.

29. Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. Jun 1998;52(6):377-384.

30. Van den Broucke S, Van der Zanden G, Chang P, Doyle G, Levin D, Pelikan J, Schilinger D, Schwarz P, Sorensen K, Yardley L, Reimenschneider H. Enhancing the effectiveness of diabetes self-management education: The Diabetes Literacy project. Horm Metab Res.In press.

31. Schwarz PE, Gallein G, Ebermann D, Muller A, Lindner A, Rothe U, Nebel IT, Muller G. Global Diabetes Survey--an annual report on quality of diabetes care. Diabetes Res Clin Pract. Apr 2013;100(1):11-18.

32. Baradaran HR, Shams-Hosseini N, Noori-Hekmat S, Tehrani-Banihashemi A, Khamseh ME. Effectiveness of diabetes educational interventions in Iran: a systematic review. Diabetes Technol Ther. Apr 2010;12(4):317-331.

80

33. Lou Q, Wu L, Dai X, Cao M, Ruan Y. Diabetes education in mainland China- a systematic review of the literature. Patient Educ Couns. Dec 2011;85(3):336-347.

34. Aliha JM, Asgari M, Khayeri F, Ramazani M, Farajzadegan Z, Javaheri J. Group education and nurse-telephone follow-up effects on blood glucose control and adherence to treatment in type 2 diabetes patients. Int J Prev Med. Jul 2013;4(7):797-802.

35. Bayat F, Shojaeezadeh D, Baikpour M, Heshmat R, Baikpour M, Hosseini M. The effects of education based on extended health belief model in type 2 diabetic patients: a randomized controlled trial. J Diabetes Metab Disord. 2013;12(1):45.

36. Farsaei S, Sabzghabaee AM, Zargarzadeh AH, Amini M. Effect of pharmacist-led patient education on glycemic control of type 2 diabetics: a randomized controlled trial. J Res Med Sci. Jan 2011;16(1):43-49.

37. Hazavehei SM, Khani Jeihooni A, Hasanzadeh A, Amini S. The Effect of Educational Program Based on BASNEF Model for Eye Care in Non-insulin Dependent Diabetic Patients. J Res Health Sci. 2010;10(2):81-90.

38. Kashfi SM, Khani Jeihooni A, Rezaianzadeh A, Amini S. The effect of health belief model educational program and jogging on control of sugar in type 2 diabetic patients. Iran Red Crescent Med J. Jul 2012;14(7):442-446.

39. Samadi N SM, Mahmoodi M. Impact of quality of life education on self-concept among type 2 diabetes patients. J Diabetes Metab. 2011;2(5):1-5.

40. Sharifirad G, Entezari MH, Kamran A, Azadbakht L. The effectiveness of nutritional education on the knowledge of diabetic patients using the health belief model. J Res Med Sci. Jan 2009;14(1):1-6.

41. Vatankhah N, Khamseh ME, Noudeh YJ, Aghili R, Baradaran HR, Haeri NS. The effectiveness of foot care education on people with type 2 diabetes in Tehran, Iran. Prim Care Diabetes. May 2009;3(2):73-77.

42. Gagliardino JJ, Lapertosa S, Pfirter G, et al. Clinical, metabolic and psychological outcomes and treatment costs of a prospective randomized trial based on different educational strategies to improve diabetes care (PRODIACOR). Diabet Med. Sep 2013;30(9):1102-1111.

43. Perman G, Beratarrechea A, Aliperti V, et al. Mortality in an elderly type 2 diabetic patients' cohort who attended a self-management educational workshop. Prim Care Diabetes. Oct 2011;5(3):175-184.

44. Atak N, Gurkan T, Kose K. The effect of education on knowledge, self-management behaviours and self-efficacy of patients with type 2 diabetes. Int J Nurs Pract. 2009;18(2):170-179.

45. Karakurt P, Kasikci MK. The effect of education given to patients with type 2 diabetes mellitus on self-care. Int J Nurs Pract. Apr 2012;18(2):170-179.

46. Song MS, Kim HS. Intensive management program to improve glycosylated hemoglobin levels and adherence to diet in patients with type 2 diabetes. Appl Nurs Res. Feb 2009;22(1):42-47.

47. Liu S, Bi A, Fu D, et al. Effectiveness of using group visit model to support diabetes patient self-management in rural communities of Shanghai: a randomized controlled trial. BMC Public Health. 2012;12:1043.

48. Shi Q, Ostwald SK, Wang S. Improving glycaemic control self-efficacy and glycaemic control behaviour in Chinese patients with type 2 diabetes

81

mellitus: randomised controlled trial. J Clin Nurs. Feb 2010;19(3-4):398-404.

49. Al-haddad M, Ibrahim M, Sulaiman S, Maarup N. The impact of two diabetes educational programs on patients with diabetes in Malaysia. J Clin Diagn Res. . 2009;3:1633-1640.

50. Gagliardino JJ, Aschner P, Baik SH, et al. Patients' education, and its impact on care outcomes, resource consumption and working conditions: data from the International Diabetes Management Practices Study (IDMPS). Diabetes Metab. Apr 2012;38(2):128-134.

51. Chan JC, Gagliardino JJ, Baik SH, et al. Multifaceted determinants for achieving glycemic control: the International Diabetes Management Practice Study (IDMPS). Diabetes Care. Feb 2009;32(2):227-233.

52. Gill GV, Price C, Shandu D, Dedicoat M, Wilkinson D. An effective system of nurse-led diabetes care in rural Africa. Diabet Med. May 2008;25(5):606-611.

53. Price C, Shandu D, Dedicoat M, Wilkinson D, Gill GV. Long-term glycaemic outcome of structured nurse-led diabetes care in rural Africa. Qjm. Jul 2011;104(7):571-574.

54. van der Does AM, Mash R. Evaluation of the "Take Five School": an education programme for people with Type 2 Diabetes in the Western Cape, South Africa. Prim Care Diabetes. Dec 2013;7(4):289-295.

55. Mahajan H, Kambali T, Chokhandre M, Borle A, Padvi M. Health Intervention Impact Assessment on Glycemic Status of Diabetic Patients. International Journal of Diabetes Research. 2012;1(5):73-80.

56. Mahant S. Evaluating the impact of counseling on quality of life in type-2 diabetes mellitus patients. . Int J Pharm Bio Arch. 2013;2(6):137-141.

57. Malathy R, Narmadha M, Ramesh S, Alvin JM, Dinesh BN. Effect of a diabetes counseling programme on knowledge, attitude and practice among diabetic patients in Erode district of South India. J Young Pharm. Jan 2011;3(1):65-72.

58. Brown SA, Hanis CL. Culturally competent diabetes education for Mexican Americans: the Starr County Study. Diabetes Educ. Mar-Apr 1999;25(2):226-236.

59. Balagopal P, Kamalamma N, Patel TG, Misra R. A community-based participatory diabetes prevention and management intervention in rural India using community health workers. Diabetes Educ. Nov-Dec 2012;38(6):822-834.

60. Corkery E, Palmer C, Foley ME, Schechter CB, Frisher L, Roman SH. Effect of a bicultural community health worker on completion of diabetes education in a Hispanic population. Diabetes Care. Mar 1997;20(3):254-257.

61. Norris SL, Chowdhury FM, Van Le K, et al. Effectiveness of community health workers in the care of persons with diabetes. Diabet Med. May 2006;23(5):544-556.

62. Philis-Tsimikas A, Fortmann A, Lleva-Ocana L, Walker C, Gallo LC. Peer-led diabetes education programs in high-risk Mexican Americans improve glycemic control compared with standard approaches: a Project Dulce promotora randomized trial. Diabetes Care. Sep 2011;34(9):1926-1931.

82

63. Kandula NR, Nsiah-Kumi PA, Makoul G, et al. The relationship between health literacy and knowledge improvement after a multimedia type 2 diabetes education program. Patient Educ Couns. Jun 2009;75(3):321-327.

64. White RO, Wolff K, Cavanaugh KL, Rothman R. Addressing Health Literacy and Numeracy to Improve Diabetes Education and Care. Diabetes Spectr. Oct 2 2010;23(4):238-243.

65. Katz MG, Kripalani S, Weiss BD. Use of pictorial aids in medication instructions: a review of the literature. Am J Health Syst Pharm. Dec 1 2006;63(23):2391-2397.

66. Kripalani S, Robertson R, Love-Ghaffari MH, et al. Development of an illustrated medication schedule as a low-literacy patient education tool. Patient Educ Couns. Jun 2007;66(3):368-377.

83

CHAPTER 4: An audit of policies and programs

An audit of diabetes self-management education

programs in South Africa

Published as:

Dube L, Van den Broucke S, Rendall-Mkosi K, Kalweit K, Housiaux M, D’Hoore W.

An audit of diabetes self-management education programs in South Africa.

Journal of Public Health Research, 2015: 4(581), 176–184. doi:

10.4081/jphr.2015.581.

84

Abstract

Background

Diabetes is a significant contributor to the burden of disease worldwide. Since its

treatment requires extensive self-care, self-management education is widely

recommended, particularly in resource limited settings. This study aimed to review

the current state of policies and implementation of diabetes self-management

education (DSME) in South Africa, with a specific focus on cultural appropriate-

ness.

Design and Methods

The audit involved a review of policy documents and semi-structured

questionnaires with providers and experts in public and private health services.

Forty-four respondents were interviewed. Documents were analysed with reference

to the International Standards for Diabetes Education from the International

Diabetes Federation. Interview data were entered and analysed in excel to give a

description of the DSME programs and ad-hoc interventions.

Results

Three guidelines for Type 2 diabetes and two for chronic diseases were retrieved,

but none were specifically dedicated to DSME. Five structured programs and 22

ad-hoc interventions were identified. DSME is mostly provided by doctors, nurses

and dietitians and not consistently linked to other initiatives such as support

groups. Health education materials are mainly in English with limited availability.

85

Conclusions

DSME in South Africa is limited in scope, content and consistency, especially in the

public services. A National curricula and materials for diabetes education need to

be developed and adapted to the socio-economic context, culture and literacy

levels of the target populations. It is recommended that DSME would be addressed

in national policies and guidelines to guide the development and implementation of

standardised programs.

Significance to public health

Diabetes significantly contributes to the global burden of disease. This burden is

especially felt in developing countries, where resources are limited and the health

system simultaneously has to deal with communicable and non-communicable

diseases. While there is a growing body of literature on the development and

implementation of diabetes self-management education, nearly all programs

originate from developed countries. Very little is known about the current state of

diabetes self-management education in developing countries. By focusing on

diabetes self-management education in Southern Africa, the current paper provides

policy makers and decision makers in South Africa with information that will help

decide on where and how to intervene with regard to diabetes self-management

education. The paper also has relevance for decision makers from other

developing countries by providing recommendations on diabetes policies and

diabetes self-management education.

86

Introduction

Diabetes mellitus (DM) is a significant contributor to the burden of disease

worldwide, and its growing prevalence is a great concern for public health (1).

Recent estimates indicate that 382 million people are living with diabetes

worldwide, and that by the year 2035 this number will rise to 592 million (2). It is

also estimated that about 77% of people with diabetes live in low- and middle-

income countries where most deaths occur under the age of 60 years (2, 3). As a

result, many developing countries including South Africa are faced with the double

burden of communicable and non-communicable diseases (NCDs) (3).

According to the International Diabetes Federation (IDF), there were nearly 3

million people with diabetes in South Africa in 2013, with a prevalence of 8.27%

among the age group 20-79 years (2). The rising prevalence of diabetes is largely

due to economic development and urbanization which leads to changing lifestyles,

thereby reducing physical activity and increasing the levels of obesity and the

consumption of foods high in salt, fat and sugar (4). The prevalence of obesity is

indeed very high in South Africa, where the rates of obesity and combined

overweight and obesity (42% and 69.3%, respectively) are the highest in Sub-

Saharan Africa (5).

As diabetes requires extensive self-management related to diet, exercise and

medication in order to prevent complications, self-management education and

support are regarded as a critical element of treatment for all people with diabetes

(6). As such, diabetes self-management education (DSME) is widely

recommended and carried out where resources permit. However, despite the

great variety of DSME programs that are currently available internationally, there

is a paucity of information regarding educational interventions for the prevention of

diabetes complications in developing countries (7, 8).

The National Department of Health of South Africa has recently taken the initiative

to re-engineer the organisation of Primary Health Care (PHC) in the country and

to develop a National Health Insurance (NHI) system (9). A National Summit on

87

the prevention and control of NCDs organized in 2011 resulted in the commitment

to develop and implement different strategies to prevent and control NCDs

through preventive, health promoting, curative, rehabilitative and palliative

services at all levels (10). As such, it is important, to consider how DSME can be

integrated in this new system, and to what extent the re-engineering of PHC

provide a basis to develop and implement evidence-based programs for diabetes

self-management.

Moreover, for DSME to be effective in a multicultural society like South Africa, it is

required that both the educators and the content of programs be culturally

sensitive (11). Cultural sensitivity can be considered at two levels: surface

structure and deep structure (7). Surface structure refers to matching the

intervention materials and messages to observable “superficial” characteristics of

a target population, such as familiar people, places, language, music, food and

locations. Deep structure requires an understanding of the cultural, social,

historical and psychological forces that influence the target population.

This study sought to review the policies and guidelines presently available in

South Africa with regard to DSME, and to characterise the existing DSME offered

in both the private and the public health care services. The questions addressed

in the audit were to establish what types of DSME programs are currently offered

in different settings across the country, who implements them, what educational

approaches are used, how the programs are structured, how accessible they are,

what challenges are faced, and to what extent they are culturally sensitive. As

such, the audit provides a snapshot of the current state of DSME policies and

guidelines and of the implementation of DSME programs in South Africa.

Design and Methods

Study design and setting

An audit was conducted from March to June 2014 to explore DSME policies and

programs across the seven Provinces of South Africa. The audit involved a

document review of DSME policy and guidelines as well as interviews with health

88

service providers and experts involved in diabetes service provision, management

and research, in order to describe current DSME interventions.

Definition of terms

An intervention is referred to as a structured program when it has a clear definition,

a specific target group, a planned structure, a clear objective, a defined timeframe,

and a person/unit with formal program responsibility (Röthlin et al. Protocol for a

pre-post evaluation study on the effectiveness of existing diabetes self-

management programs, Working paper, Unpublished, The Diabetes Literacy

Project. 2014). For the purpose of this study, ad-hoc interventions were regarded

as those interventions which include educational talks in the waiting area or

spontaneous sharing of information during individual medical consultations without

planned structure and defined time frame. A public health service is one that is

provided by the national government, whereas a private health service is one

provided by the private sector and is for profit making. Providers include nurses,

doctors, health educators and experts refer to either researchers or people

involved in the field of diabetes in government, universities or private services.

Sampling

Purposive, convenience and snowball sampling were used to select respondents

aiming for diversity between public and private providers. Purposive sampling was

used to include respondents from different health sectors, as differences were

expected between private and public services. Convenience sampling was applied

by asking the organisers of the 49th Congress of the Society for Endocrinology,

Metabolism and Diabetes of South Africa (SEMDSA) the permission to recruit

participants attending this congress. Furthermore, respondents were recruited from

different settings, including selected public and private facilities and non-

governmental organisations (NGO) using snowball sampling. The first author (LD)

contacted Heads of the Provincial Health Departments of all provinces of South

Africa and asked to be referred to a focal person for chronic diseases in each

Province. Provincial focal persons were interviewed and referred the researchers to

89

relevant facilities and other NGO focal people in the area. Data were only collected

from Provinces who gave approval and from individuals who gave informed

consent to participate.

Data collection

Policy and guideline documents for the review were accessed via the website of

the National Department of Health (11). To avoid missing relevant documents,

respondents were asked for any available documents and copies were collected if

available. Only documents relating to Type 2 diabetes were included for document

analysis.

For the data collection from service providers, experts and researchers, two

questionnaires were used. The questionnaires were adapted from the Global

Diabetes Survey (GDS), which is a tool to collect data on diabetes care quality on a

yearly basis, developed and validated via a multiple Delphi process (12, 13). The

provider questionnaire collected information about existing DSME programs in

terms of the type of programs, providers, target groups, educational approach, and

challenges faced. The expert questionnaire collected information regarding DSME

policy, accreditation of DSME interventions by accrediting bodies (standardising

bodies) and suggestions for policies and guidelines. The questionnaires were

mostly self-administered but in a few cases (5 interviews) they were interviewer

administered. Additional notes were taken during the interviews.

Data management and analysis

Data from the documents were extracted using the International Standards for

Diabetes Education (ISDE) developed by the International Diabetes Federation.

These standards have been developed and revised based on experiences from

diabetes educators in both developing and developed countries, and aim to

support policy makers worldwide to develop diabetes education. They provide a

benchmark against which the quality of education delivered can be evaluated (14).

The ISDE were used by two authors (LD and MH) to independently extract

90

information on the content of DSME in the national guidelines in order to establish

the adequacy of these documents in South Africa in terms of structure, process

and outcome standards. An agreement of 90% was achieved between the authors

and through further discussion a consensus (100% agreement) was reached.

Questionnaire data were entered and analysed in excel to give an overview of the

current status of DSME in private and public services of South Africa.

Ethics

The study was approved by the Health Sciences Research Ethics Committee of the

University of Pretoria (54/2014) and the Provincial Research Ethics Committees of

each province in the public sector. Respondents gave written informed consent and

anonymity and confidentiality of their responses was assured.

Results

Distribution of participants across provinces

Forty-four respondents completed the questionnaires; 27 providers (7 from

private, 4 from NGOs and 16 public) and 17 experts. Data was collected in all

provinces except for Eastern Cape and Limpopo’s public sector where no

permission was granted. Table 4.1 shows number of respondents per province

with Gauteng having the highest number of respondents.

91

Table 4.1 Number of respondents from each province

Province Provider

questionnaire Expert

questionnaire Total

respondents

Gauteng 8 9 17

Mpumalanga 4 1 5

North West 3 1 4

Northern Cape 1 1 7

Free State 3 1 4

Western Cape 4 0 5

KwaZulu-Natal 2 3 7

Limpopo 2 1 3

Eastern Cape 0 0 0

Total 27 17 44

Policies and guidelines with regard to DSME

No policy documents were identified with regards to DSME specifically. Three

guideline documents on Type 2 diabetes were found: The Updated Management of

Type 2 Diabetes in Adults at Primary Care Level, released in 2014 (15); The

National Guidelines for the Management of Diabetes Type 1 and 2 in Adults at

Hospital Level, released in 2005 (16); and The 2012 SEMDSA Guideline for the

Management of Type 2 Diabetes (Revised) (17). The first two documents were

obtained from the National Department of Health. In these three documents,

diabetes education was minimally covered. The guidelines included information on

structure and process standards; however, this information was not

comprehensive. As shown in Table 4.2, it appears that the 2014 document from the

National Department of Health was derived using the 2012 SEMDSA guidelines as

the information included is almost the same. The 2005 document covered the least

amount of information on DSME compared to the other two guidelines.

To understand DSME in the context of chronic disease management in South

Africa, the Integrated Chronic Disease Management (ICDM) Manual (undated)(18)

92

and the Primary Care 101(19) guidelines were also taken into consideration. The

ICDM is a model of care for chronic diseases that is being implemented by the

National Department of Health of South Africa. The Primary care 101 is currently

being implemented as part of the ICDM in primary care. The disease categories

currently being addressed in this model are hypertension, diabetes, chronic

obstructive pulmonary disease, asthma, epilepsy, mental health HIV/AIDS,

tuberculosis (TB) and multi-drug resistant TB. The model contains a self-

management component which aims to empower individuals to take responsibility

for their illness through understanding the necessary preventive and promotional

actions required to decrease complications and multiple visits to the facilities. The

expected outcome is to create an informed, motivated and adherent patient.

According to this model, trained Community Health Workers (CHWs) are mandated

to provide health education to patients during home visits. Health education and

promotion strategies are applied at the individual, family and community level to

reduce the risk factors for developing chronic diseases and prevent complications

from the existing condition(s). The health education sessions include, but are not

limited to: healthy eating, active living through appropriate exercises, decrease in

alcohol intake, reduction in tobacco, snuff, alcohol, salt and risky sexual behaviour.

The primary care 101(19) guideline document is designed in such a way that for

each chronic disease, it gives some educational information which the provider

should give to the patient. For diabetes the provider is advised to encourage the

patient to adhere to medication, educate patient on recognizing and managing

hypoglycemia, and to care for their feet.

In their responses to the questionnaires, experts and providers made recommen-

dations that could be included in policies and guidelines for implementation of

DSME. These include environment related policies such as subsidization of healthy

foods and support for people with diabetes in the work place. To support patient

adherence to insulin use, policies could mandate patients to bring back an empty

insulin pen to qualify for renewal of insulin prescription. Furthermore, guidelines

93

could also include dietary recommendations appropriate for poor communities in

order to support patients to adhere to dietary recommendations. Guidelines could

consider more attention to the actual implementation of DSME, support for

educational programs, establishment of one standard-assuring body for diabetes

education and also consider recognition of the training of providers in DSME.

Description of DSME programs

Of the 27 respondents who answered the questionnaire on interventions, five

reported on structured programs and 22 reported on ad-hoc education

interventions. Sixteen of the 27 programs are in the public services whilst 11 are

in the private services and NGOs. Respondents reported that few interventions

(37%) are accredited by a professional body (Diabetes Education Society of South

Africa (DESSA), the International Diabetes Federation (IDF), the United Kingdom

Diabetes Association and Center for Diabetes Education (CDE), the Provincial

Department of Health and SEMDSA).

Of the five programs that are structured, three are in the public services and two in

the private services. All the programs are offered as initial education interventions

and have a clear start and an end with a duration of two days to eight months

(Table 4.3). At two facilities the same program is offered. Twenty-two services

offer ad-hoc education. Of these, 13 are in the public services and nine in the

private sector. Most DSME interventions (15 of 22) are incorporated into the

ICDM, whereby the diabetes patients are grouped with those with other chronic

illnesses for educational purposes. This education mostly takes place in the facility

waiting area or club rooms, or, in the case of individual counseling, sometimes

during medical consultations with the providers. DSME interventions in the public

sector are free of charge. In the private sector they are included in the

consultation fee.

94

Table 4.2 DSME information extracted from guidelines using the International Standards for Diabetes Education (14)

Domains in International Standards for Diabetes Education (14)

Criteria set by the International standards for diabetes education

The Updated Management of Type 2 Diabetes in Adults at Primary Care Level ,2014

The 2012 SEMDSA Guideline for the Management of Type 2 Diabetes, 2012

The National Guidelines for the Management of Diabetes Type 1 and 2 in Adults at Hospital Level, 2005

STRUCTURE STANDARDS

Organizational support- there is evidence of organizational/institutional support for diabetes self-management education (DSME) as an integral part of diabetes care

Not included Not included Not included

Coordination- One person responsible for the organization and administration of DSME services to ensure that the process and outcome standards are met


Physical space and equipment- the quality and availability of physical space and educational resources affect learning and are based on individual/community needs


Advisory committee- An advisory committee ensures that the views and values of all stakeholders are represented in the ongoing planning and delivery of DSME


The team and team work-multidisciplinary teamwork and communication are evident among those providing DSME and diabetes care services

Not included Not included All health professionals, lay health workers, traditional healers & complimentary health professionals

95






STRUCTURE STANDARDS

Professional skill and continuing education- a) personnel involved in DSME have a sound clinical understanding of diabetes, and are knowledgeable about teaching and learning methods and diabetes care b) The competence and performance of personnel involved in DSME are reviewed at least annually and an individual learning and development plan implemented to strengthen knowledge, skills and attitudes c) Professional DSME personnel are appointed based on demonstrated competences not on a rotational basis

Not Clear - Trained educators mentioned to provide education

Not clear – providers to be trained in motivational interviewing

Not included

Curriculum- Diabetes education covers topics based on individual assessment and fosters the acquisition of knowledge, skills, behaviors and coping strategies that are needed for optimal self-management of diabetes

Only topics outlined Only topics outlined Only topics outlined

Support systems- a) Strategic partnerships and referral pathways are developed in order to improve communication and the consistency of services among healthcare professionals, and to maximize the impact of diabetes resources. b) Ongoing self-management education and support are accessible to people with diabetes after the completion of initial DSME.


96






PROCESS STANDARDS

Community assessment- The DSME service develops based on an ongoing assessment of the needs of the population it serves.


Individualized plan - Plans for individual diabetes education and diabetes education programs are learner-centered and subject to ongoing review and modification.

An integrated approach to education is utilized, recognizing and acknowledging the different needs of the patient, family and / or caregiver.

Not included Not included

Implementation – a) The implementation of DSME is learner-centered and facilitates cognitive learning, behavior change, healthy coping and self-management, and is extended to families, supporters, carers and communities where appropriate. b) DSME is evidence-based and provided in a professional and ethically sound manner.

An evidence-based structured education program on diabetes self-management is offered to all patients at the time of diagnosis, and consolidated at regular intervals thereafter.

An evidence-based, structured education program should be offered to all patients at the time of diagnosis, and consolidated at regular intervals thereafter.

Not included

97






Access- a) DSME services will be recognized by and accessible to the local community. b) The DSME service leadership and team members seek strategic alliances and partnerships with relevant community services in order to increase accessibility, and advance DSME and DSMS. c) Follow-up and DSMS are accessible as needed and recommended as part of continuing education, behavioral goal-setting and action-planning, and/or reinforcement.


Evaluation- The effectiveness and quality of the DSME service are assessed annually, linked to outcomes, and reviewed and revised on the basis of this assessment.

A regular audit of the program, and its effect on outcomes, is advised

A regular audit of the program and its effect on outcomes is advised.

OUTCOME STANDARDS

Knowledge- People with diabetes understand the effects of diabetes, treatment modalities, management of the behavioral, psychosocial and clinical aspects of diabetes, and the significance of maintaining a healthy lifestyle in order to reduce the risks for diabetes-related complications.


98






Application of knowledge - People with diabetes and those at risk for diabetes make informed decisions and take deliberate action towards healthy living. These decisions occur in the context of their own values, socio-economic needs and resources, and desired quality of life.


Clinical outcomes- a) The physical, psychological, and emotional health of the person with diabetes is improved. b) The person with diabetes collaborates with clinical care providers to define problems, set priorities, establish goals, create action and treatment plans, and solve problems.


The community- primary prevention Communities are aware of risk factors for diabetes and its potential complications and actions that may delay their onset.


Community support- Communities are aware of the different types of diabetes and the needs of and support available for people living with diabetes.


99

Table 4.3 Timeframes of structured programs

Name of program Duration Number

of sessions

Duration of each

session

Period between sessions

Five steps to self-care (NGO- Gauteng)

8 months 32 30mins -2hours 1 week

Diabetic Lifestyle Education Collaboration & Action (D-LECA) (Woodstock, public facility, Western Cape)

4 months 4 2-4hours 1 month

D-LECA (Lotus river , public facility, Western Cape)

4 months 4 1-2 hours 1 month

Lifestyle management + training for T2 diabetes (Public Hospital- Gauteng)

6 weeks 6 4 hours 1 week

Youth with diabetes weekend camps (Youth with Diabetes, NGO- Gauteng)

2 days 5 30-60 minutes Annual 2 days event

Providers - For both structured programs and ad-hoc education, different

combinations of providers are employed. Most providers are health professionals,

with physicians and dietitians being the most common. Health promoters are the

only non-professional category mentioned (Figure 4.1). Respondents also

mentioned that training is essential for providers and that specific diabetes-related

training courses are necessary, including the ones provided by DESSA or CDE.

100

Figure 4.1 Types of providers in diabetes self-management education

Target population - In structured programs, the target population are patients

with either Type 1 or 2 diabetes and other chronic diseases. Only one program

addressed children and adolescents with Type 1 diabetes. The ad-hoc interven-

tions in the public services mostly target adult patients, while children are referred

to specific facilities. In the private service all age groups are addressed.

Educational interventions offered in the private services also address gestational

diabetes, while in the public service these patients are immediately referred to the

special maternity care clinics. In both structured and ad-hoc interventions,

education is designed for patients and their families or their peers. The majority of

the ad-hoc interventions were done in community based primary care, diabetes

special care and hospital settings. Of the structured programs, 3 were offered in

community based primary care, one in diabetes special care, and one in a non-

clinical setting.

Program content – Content analysis of the structured and ad-hoc interventions

was done based on the self-care behaviour topics included in the American

101

Association of Diabetes Education (AADE) (20) (i.e., healthy eating, staying

active, taking medication, monitoring of blood glucose, problem solving, reducing

risks and living with diabetes). In both the structured programs and ad-hoc

interventions, the content of the educational activities varied considerably. Table

4.4 shows the different contents of education for both structured and ad-hoc

interventions. As this table shows, across programs healthy eating, physical

activity and self-monitoring of blood glucose were most often addressed, while

glucagon administrations, self-measurement of blood pressure and dealing with

the legal aspects of the disease were least often addressed.

Table 4.4 Content included in programs and ad-hoc interventions

Topic based on AADE (20)

Sub-topic Ad-hoc Structured

Healthy eating

Meal planning 21 4

Food labelling & interpretation 17 4

Weighing 16 4

Carbohydrates counting 13 3

Physical activity Developing appropriate activity plans 21 2

Increase frequency, duration and intensity 19 4

Self-monitoring of blood glucose

Self-monitoring of blood glucose technique (skills) 22 5

Recording of blood glucose values 21 5

Equipment use and care 18 3

Taking medication

Preparation, technique and administration 20 5

Recognition, treatment & prevention of low blood glucose

20 5

Safe handling and disposal of equipment 18 4

Dose adjustment 16 3

Problem solving

Hypoglycaemia treatment 22 5

Use of blood glucose data to determine appropriate actions

21 5

Glucagon administration 7 2

Reducing risks

Self-management of blood glucose (knowledge) 19 5

Smoking cessation 20 3

Maintaining personal records 19 4

Foot exam 19 3

102

Topic based on AADE (20)

Sub-topic Ad-hoc Structured

Staying in contact with diabetes care professionals 18 4

Support in searching for further contact and help 14 4

Self-measurement of blood pressure 10 2

Living with diabetes

Goal setting/individual targets 21 4

Problem solving 20 4

Coping strategies 18 4

Action planning 18 3

Understanding own clinical picture 19 2

Self-efficacy 20 1

Dealing with depression 15 1

Dealing with legal aspects of the disease 10 0

Educational approaches - In the structured programs, education is offered in

planned group sessions with professional facilitation and sometimes with

additional individual and self-help sessions for patients with poorly controlled

diabetes. A structured written curriculum for each program is available and two of

the programs use the “I change 4 Health” lifestyle change materials developed for

patients with non-communicable diseases (21). One program has a website

available for patients. The ad-hoc educational interventions are offered in groups

in the waiting area and during individual consultation sessions with the provider.

Some ad-hoc educational interventions had written guidelines to which provider

could refer for information. Respondents reported using pamphlets and booklets

which are mainly written in English. In most cases these materials are supplied by

pharmaceutical companies free of charge but are not always available. According

to the respondents (93%) from both structured and ad-hoc interventions,

education is accessible to people with low levels of literacy through the use of the

local language, practical demonstrations, pictures and visual aids and the

encouragement of family involvement. However, deep structural aspects of culture

including individual needs assessment are rarely addressed.

Evaluations of programs - Two of the five structured programs were based on a

randomised controlled trial (RCT) that showed the program to be cost-effective in

103

the South African context (22). Two other programs are in the process of being

evaluated: one using a randomised controlled trial, and another using a

retrospective observation study. The remaining program was never evaluated.

None of the ad-hoc educational interventions have ever been evaluated.

The experts’ responses to the questionnaires revealed that core educational

principles exist on paper, yet their implementation is not guaranteed. In terms of

the perceived effectiveness of DSME programs, most experts gave a score

between 5 to7 on a scale of 1-10 (with 1 being not at all effective versus 10 being

very effective), indicating an intermediate effectiveness. When asked to identify

the aspects of DMSE that need improvement, the experts mentioned the need to

develop structured patient education programs and a need to train personnel in

chronic disease education. The introduction of chronic disease education in

schools as part of a school lifestyle and wellness was also suggested.

In their response to questionnaires, providers identified a range of problems that

affect the delivery of DSME. One problem concerned inadequate finances, which

results in a shortage of staff, long working hours, and lack of time and space for

patient education which leads to low prioritisation of DSME. A second problem is

the lack of recognition for staff after diabetes training, and a shortage of teaching

materials to give to patients. A third issue concerns the patients, who are said to

be ignorant and non-compliant. Abuse of services and misconceptions

surrounding diabetes regardless of patient education was also mentioned. A

further problem is related to poverty and the difficulty patients have in adhering to

diet recommendations due to food insecurity.

Discussion

This audit aimed to collect information on policies and the nature of existing DSME

programs in South Africa. It was revealed that although there is currently no policy

specific to DSME in South Africa, DSME is mentioned in national guidelines on

diabetes. However, much needs to be done in terms of developing and implement-

ing guidelines for DSME, in order to reach the International Standards for Diabetes

104

Education (14). As these standards are designed to provide a framework to

establish or further develop DSME, failure to meet these standards results in a

poor implementation of DSME.

A first shortcoming revealed by this audit is the absence of well-structured

programs for DSME. DSME is often delivered on an ad-hoc basis in the waiting

area or individually during consultation with the provider. Individual ad-hoc

education has its own challenges, such as the fact that the actual delivery of the

education depends on the available time of the provider (23), or that patients

receiving DSME in the waiting area are disturbed by noise, lack of privacy, and

other factors that make it difficult to concentrate on the content. The ad-hoc nature

of DSME also results in individual patients being exposed to an arbitrary choice of

topics, which may not result in the behaviour change that is required.

On the other hand, it is possible to combine ad hoc counselling with structured

group education. A model that combines behaviour change counselling with ad hoc

guidance organised around 5 “As”(assess, advise, agree, assist and arrange) has

been proposed and has shown to be effective. (24) Although the implementation of

this 5As model is currently limited, it could be used by primary care physicians in

their consultations with patients.

The providers who are responsible for DSME in South Africa are mostly

professional health care providers and only a small proportion are non-health

professionals. This is contrary to the ICDM model, which recommends that health

education should mainly be provided by CHWs and health promoters. There was

no mention of CHWs as providers in the interviews. According to a recent

systematic review, it is advisable that in resource poor settings peers and CHWs

are trained to provide DSME, while professional staff like nurses takes up

supervisory and training roles for the non-professionals (7). However, one should

note that relying more on CHWs also has its limits and is not a panacea, especially

when these are not sufficiently trained. An extensive Cochrane review revealed

limited evidence of trained lay health workers on providing effective DSME,

however, this could still be part of the solution for developing countries (25).

105

A second shortcoming emerging from this audit is that there is no continued

education for providers and a lack of recognition for providers after diabetes

training. Despite the existence of national guidelines on diabetes education, some

providers reported that they were not aware of these, which suggests a lack of

ongoing training and refresher workshops that are crucial for providers. This

confirms the findings from a previous study, indicating that current training in

behaviour change counselling for primary care providers is very limited (26). Health

professionals need access to continued education and training to stay updated on

new developments and to boost their morale and professional role (23). Moreover,

a lack of a standardised written curriculum, physical space and time presents a

challenge for the implementation of DSME programs, as has been suggested by

previous research mentioning the lack of physical space in facilities as hindering

DSME interventions (23, 26, 27).

A third point showing from this audit is the lack of cultural adaptation of DMSE and

the absence of the patient perspective. Whereas diabetes guidelines recognise

and acknowledge the different needs of patients, family and caregivers, there is

very little evidence of this taking place in practice. Although local languages are

used to communicate with patients and pictures and visual aids are used (surface

structure), there are no individual needs assessments (deep structure), and most

written materials are only available in English. Providers requested practical dietary

recommendations for people in poverty stricken areas as the current

recommendations are inappropriate. This shows that the cultural sensitivity of

existing DSME interventions still needs to be improved. For diabetes education to

be effective in multicultural societies, both the educators and the content of

programs should be culturally sensitive (7, 8, 28). Therefore, self-management

curricula should be developed and adapted to the culture and needs of the

patients. The patient education component in the Primary Care 101 document

could be expanded in order to provide advice to providers.

A fourth shortcoming is the lack of evaluation of DSME programs. It is important in

health promotion that programs be evaluated in order to contribute to the evidence

106

base (29, 30). Although the national guidelines on diabetes state that evidence-

based structured self-management must be provided to patients and that a regular

audit should be performed, this was not the case. Most DSME interventions, except

for the two structured programs derived from the RCT, have not been evaluated,

which makes it impossible to consider their effectiveness.

While this audit is the first of its kind to describe current policies and guidelines with

regard to DSME in South Africa, and to consider the way in which DSME

interventions are implemented in different settings across the country, we are

aware of its limitations. Firstly, since non-randomised sampling was used as a

method to select interventions for inclusion in the study, it is possible that we have

missed some interventions. Furthermore, because of difficulty in obtaining ethical

clearance from some facilities and authorities, and due to limited resources, some

potentially relevant documents and interventions may have been missed. Thirdly

no observation of interventions was carried out, which precludes the possibility of

triangulating the results with what respondents reported. Nevertheless, given the

recurrent findings and the high degree of consensus with regard to the information

derived from the sources that were consulted, we believe that this audit provides a

useful snapshot of the current policy and practice with regard to DSME in South

Africa.

Conclusions

DSME is rarely adequately addressed in national policies and guidelines in South

Africa, and much work still needs to be done for DSME in the country to reach

international standards. At present, DSME is mainly offered on an ad-hoc basis,

and only a few structured programs exist. For both ad-hoc and structured

interventions, health professionals are the main providers. Many barriers exist to

develop and implement more structured DSME. These include, but are not limited

to, lack of time and space, lack of finances, and lack of educational resources in

other languages than English. It is recommended that these points would be

107

addressed in national policies to guide the development and implementation of

standardised, more culturally sensitive and more effective DSME programs.

References

1. Hjelm K, Mufunda E. Zimbabwean diabetics' beliefs about health and illness: an interview study. BMC international health and human rights. 2010;10:7.

2. IDF Diabetes Atlas. Sixth edition. [Internet]. 2013 [cited 28 July 2015]. Available from: https://www.idf.org/sites/default/files/EN_6E_Atlas_Full_0.pdf.

3. Mayosi BM, Flisher AJ, Lalloo UG, Sitas F, Tollman SM, Bradshaw D. The burden of non-communicable diseases in South Africa. Lancet. 2009;374(9693):934-47.

4. Whiting DR, Guariguata L, Weil C, Shaw J. IDF diabetes atlas: global estimates of the prevalence of diabetes for 2011 and 2030. Diabetes research and clinical practice. 2011;94(3):311-21.

5. Ng M, Fleming T, Robinson M, Thomson B, Graetz N, Margono C, et al. Global, regional, and national prevalence of overweight and obesity in children and adults during 1980-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2014;384(9945):766-81.

6. Schinckus L, Van den Broucke S, Housiaux M. Assessment of implementation fidelity in diabetes self-management education programs: A systematic review. Patient education and counseling. 2014;96(1):13-21.

7. Dube L, Van den Broucke S, Housiaux M, Dhoore W, Rendall-Mkosi K. Type 2 diabetes self-management education programs in high and low mortality developing countries: a systematic review. The Diabetes educator. 2015;41(1):69-85.

8. Ezenwaka C, Eckel J. Prevention of diabetes complications in developing countries: time to intensify self-management education. Archives of physiology and biochemistry. 2011;117(5):251-3.

9. Dennill K, Rendall-Mkosi K. Primary Health Care in South Africa. A comprehensive approach. Cape Town: Oxford University Press Southern Africa; 2012.

10. South African Declaration on the prevention and control of non-communicable diseases. [Internet]. 2011 [cited 28/07/2014]. Available from: http://www.health.uct.ac.za/usr/health/research/groupings/cdia/downloads/SA_NCD_Declaration.pdf.

11. Policy Documents. Department of Health South africa [Internet]. 2014. Available from: http://www.health.gov.za/policies.php.

12. Schwarz PE, Gallein G, Ebermann D, Muller A, Lindner A, Rothe U, et al. Global Diabetes Survey--an annual report on quality of diabetes care. Diabetes research and clinical practice. 2013;100(1):11-8.

13. Van den Broucke S, Van der Zanden G, Chang P, Doyle G, Levin D, Pelikan J, et al. Enhancing the effectiveness of diabetes self-management

108

education: the diabetes literacy project. Hormone and metabolic research = Hormon- und Stoffwechselforschung = Hormones et metabolisme. 2014;46(13):933-8.

14. International Standards for Diabetes Education. Third edition. [Internet]. 2009 [cited 1 July 2014]. Available from: http://www.idf.org/files/idf_publications/international_standards_for_diabetes_education_EN/index.html.

15. Updated management of type 2 diabetes in adults at primary care level. National Department of Health South africa. 2014.

16. National Guidelines. Management of diabetes type 1 and 2 in adults at Hospital level. The National Department of Health. 2005.

17. Amod A, Ascott-Evans BH, Berg GI BD, Brown SL, Carrihill MM, Dave JA, et al. The 2012 SEMDSA Guideline for the Management of Type 2 Diabetes (Revised). Journal of Endocrinology, Metabolism and Diabetes of South Africa. 2012;17(2):S1-S95.

18. Asmall S, Mahomed O. Integrated chronic diseases management manual. National Department of Health of South Africa. Undated.

19. Primary Care 101: Symptom-based integrated care approach to the adult in primary care. [Internet]. National Department of Health. 2013. Available from: http://knowledgetranslation.co.za/programmes/pc-101/.

20. Mulcahy K, Maryniuk M, Peeples M, Peyrot M, Tomky D, Weaver T, et al. Diabetes self-management education core outcomes measures. The Diabetes educator. 2003;29(5):768-70, 73-84, 87-8 passim.

21. Murphy K, Mash B, Malan Z. Helping people to change: the busy healthcare practitioners guide to providing brief behaviour change counselling on non-communicable diseases (NCD) lifestyle risk factors.: CIDA; 2013. Available from: http://www.ichangeforhealth.co.za/index.php/healthcare-professionals/#prettyPhoto/0/.

22. Mash R, Kroukamp R, Gaziano T, Levitt N. Cost-effectiveness of a diabetes group education program delivered by health promoters with a guiding style in underserved communities in Cape Town, South Africa. Patient education and counseling. 2015;98(5):622-6.

23. Parker WA, Steyn NP, Levitt NS, Lombard CJ. Health promotion services for patients having non-comminicable diseases: feedback from patients and health care providers in Cape Town, South Africa. BMC public health. 2012;12:503.

24. Mash R. The KM Seedat Memorial Lecture: Behaviour change counselling in the South African context. Transactions. 2014;58(1):58-62.

25. Deakin T, McShane CE, Cade JE, Williams RD. Group based training for self-management strategies in people with type 2 diabetes mellitus. The Cochrane database of systematic reviews. 2005(2):Cd003417.

26. Malan Z, Mash B, Everett-Murphy K. A situational analysis of training for behaviour change counselling for primary care providers, South Africa. African journal of primary health care & family medicine. 2015;7(1):E1-e10.

27. Mash RJ, Rhode H, Zwarenstein M, Rollnick S, Lombard C, Steyn K, et al. Effectiveness of a group diabetes education programme in under-served communities in South Africa: a pragmatic cluster randomized controlled

109

trial. Diabetic medicine : a journal of the British Diabetic Association. 2014;31(8):987-93.

28. Rawal LB, Tapp RJ, Williams ED, Chan C, Yasin S, Oldenburg B. Prevention of type 2 diabetes and its complications in developing countries: a review. International journal of behavioral medicine. 2012;19(2):121-33.

29. Green J, K. T. Heath Promotion: Planning and Strategies. London: SAGE Publications Ltd; 2010.

30. Tones K, Tilford S. Health Promotion: Effectiveness, efficiency and equity. .

3rd ed. Cheltenham: Nelson Thornes Ltd; 2001.

111

CHAPTER 5: Self-management needs assessment

Self-management support needs of patients with chronic

diseases in a South African township: a qualitative study

Accepted for publication as:

Dube L, Rendall-Mkosi K, Van den Broucke S, Bergh AM, Mafutha NG. Self-

management support needs of patients with chronic diseases in a South African

township: a qualitative study. Journal of Community Health Nursing.In Press

112

Abstract

Despite the need for chronic disease self-management strategies in developing

countries, few studies have aimed to contextually adapt programs; yet culture has

a direct impact on the way people view themselves and their environment. This

study aimed to explore the knowledge, attitudes and self-management needs and

practices of patients with chronic diseases. Four patient focus groups (n=32), two

patient interviews, group observations, and key informant interviews (n=12) were

conducted. Five themes emerged: health-system and service-provision challenges,

healthcare provider attitudes and behavior, adherence challenges related to

medication and lifestyle changes, patients’ personal and clinic experiences and

self-management tool preferences. The findings provide a window of opportunity

for the development of contextually adapted self-management programs for com-

munity health nursing in developing countries.

Keywords Chronic disease · Self-management support · Patient needs and

challenges · Community health nursing · South Africa

113

Introduction

Non-communicable diseases (NCDs) affect all countries, people, genders and

ages, regardless of socio-economic status; however, they are more devastating in

low-and-middle income countries (World Health Organization, 2015a). Albreht,

Dyakova, Schellevis, & Van den Broucke, (2016) argue that worldwide the

advances in health care systems have transformed previously life-threatening

diseases like HIV into chronic conditions requiring on-going care. Because of this

transformation, developing countries now face a unique double burden of

communicable and non-communicable diseases. As such, NCDs have become an

international public health threat and have now been included in global health

targets for the first time, for example in the Sustainable Development Goals

(SDGs) (World Health Organization, 2015b).

NCDs are grouped into cardiovascular diseases, cancers, diabetes and chronic

respiratory diseases, revealing their relationship with common modifiable lifestyle

risk factors such as physical inactivity, tobacco use, unhealthy diets and harmful

use of alcohol (Maher, Ford, & Unwin, 2012). They are conditions that do not

disappear and affected people have to adjust their lifestyles in order to remain

healthy (van Olmen et al. 2011). As such, self-management is generally considered

a key treatment modality for patients with chronic diseases (Dube, et al. 2015a).

De Silva describes self-management as “the actions that individuals and caregivers

take for themselves, their children, their families and others to stay fit and maintain

good physical and mental health, meet social and psychological needs, prevent

illness or accidents, care for minor ailments and long-term conditions and maintain

health and wellbeing after an acute illness or discharge from hospital” (deSilva,

2011).

People with chronic conditions or their caregivers and family perform 80 to 90 per

cent of the overall care needed. Taking up this responsibility requires collaborative

support from health service providers. Self-management support involves

114

educating patients to maintain greater control through understanding their

condition, being involved in monitoring, and taking action. This should be

complemented by support in goal setting, decision making, adopting a healthy

lifestyle and knowing when to seek help (deSilva, 2011; Lukewich, Mann,

VanDenKerkhof, & Tranmer, 2015).

There is evidence that supporting patients to improve their self-management has

positive effects on clinical outcomes, quality of life and health service use (Brady,

et al. 2013; Franek, 2013; Steinsbekk, Rygg, Lisulo, Rise & Fretheim, 2012;

Stoilkova, Janssen, & Wouters, 2013). For this reason, health programs such as

Healthy People 2020 include self-management objectives for chronic patients

(Healthy People.gov, 2014). However, in developing countries, there is a paucity of

literature related to culturally-appropriate chronic disease self-management

strategies and tools that would meet both the surface and deep structural aspects

of the societies in which they are offered and that would affect sustainable changes

in behavior (Dube, Van den Broucke, Hosiaux, Dhoore & Rendall-Mkosi, 2015b;

Choi, Walker, Ralson, & Palermo, 2014). Surface structure refers to matching

interventions to observable characteristics of a target population (people, places,

language, music), while deep structure refers to an understanding of the culture of

the target population and includes an analysis of needs (Dube et al. 2015b).

Culture has a direct impact on the way people view themselves and their

environment (Marsiglia & Booth, 2015). While overweight and obesity are major

risk factors for NCDs, increasing weight in the South African culture is associated

with success (Kirsten & Karch, 2012) and overweight women do not perceive

obesity as a health threat (Okop, Mukumbang, Mathole, Levitt & Puoane, 2016).

Other studies have found that exposure to Asian cultural cues and identification

with black culture in American women was associated with larger ideal body sizes

(Yam, 2013). In some cases chronic illness is attributed to spiritual causes and as

a result the individual is perceived as not having control over the disease (de Graft

Aikins, Anum, Agyemang, Addo & Ogedegbe, 2012). In South African culture

traditional healers play a significant role in some communities. Sometimes these

115

healers would not refer patients to western-orientated health facilities or they would

tell patients to stop taking treatment (Maimela et al. 2015). Although contextually

relevant self-management strategies are therefore required, the development and

use of such strategies are often challenged by weak health systems and human

resource shortages. As such, the adaptation of interventions to the culture and

context of the target population is still lacking in many settings (Kirsten & Karch,

2012). Self-management does not replace health services, but complements them

by building skills for application at home and in routine health consultations

(deSilva, 2011).

Self-management education, coupled with other strategies, can thus contribute to

the task of dealing with the burden of chronic diseases in resource-poor settings

like South Africa (Dube, et al, 2015a). The South African integrated disease

management model highlights “assisted” self-management as a core component of

care (Asmall & Mahomed, 2011). In South Africa, primary healthcare (PHC)

facilities are the patients’ first point of contact with the healthcare system. These

facilities focus mainly on disease prevention and assisting and empowering

patients, while also diagnosing and treating minor illnesses. In the PHC system

professional nurses are the frontline service providers to communities, whereas

medical professionals only visit healthcare facilities for rendering services

(Mahomed & Asmall, 2015).

According to the World Health Organization (2105c), there is a misunderstanding

that chronic diseases cannot be prevented, while, in fact, 80% of premature onset

of diseases such as stroke, diabetes and heart diseases are preventable. As PHC

nurses form a central part of the multidisciplinary health team, they are increasingly

taking up roles in chronic diseases management, with one systematic review

demonstrating the effectiveness of self-management interventions implemented by

PHC nurses (Sargent, Forrest, & Parker, 2012). Community health nursing,

therefore, provides opportunities for the establishment of fruitful self-management

initiatives by patients (Maimela et al. 2015).

116

Despite the importance of contextually adapted interventions, few studies have

aimed to contextually adapt programs to the needs of the target population in

developing countries (Dube et al., 2015b). Therefore, the aim of the present study

was to explore chronic patients’ experiences of self-management and their

perceived support needs and the perspectives of key informants on patient self-

management, with a view to develop contextually appropriate disease self-

management support tools for chronic patients in South Africa.

Methods

A qualitative exploratory design with a content analysis approach was used in order

to inductively formulate categories and themes that portray the experiences and

perspectives of chronic disease participants in their natural environment (Mayring,

2014).

Study setting

The study was conducted in two public primary healthcare (PHC) facilities in an

urban township in the Tshwane metropolitan area in South Africa. One is a

community health center (CHC), with a 24-hour casualty and maternity service and

five doctors for chronic patients. The second center is a PHC clinic operating on

weekdays, with two doctors and no emergency department.

Study participants and sampling

The study had two distinct participant groups: patients with chronic diseases using

the two selected clinics for care, and professional key informants working at

different levels in the health system. Purposive, convenient and snowball sampling

strategies were employed (McKenzie, Neiger, and Smeltzer, 2005). Table 5.1 gives

an overview of participant characteristics, sampling and data collection methods.

Patient inclusion criteria were males and females over the age of 18 years with one

or more of the following conditions: diabetes, hypertension, asthma, epilepsy and

117

the human immunodeficiency virus (HIV). Patients were approached for participa-

tion on the day of their visit to the facility, while waiting to see a healthcare

provider.

Table 5.1 Overview of participant characteristics, sampling and data

collection strategies

Participants Number Sampling Data collection

KEY INFORMANTS:

Health service providers (at the 2 clinics)

4 Purposive Semi-structured individual interviews (KI) Chronic disease program

managers / Coordinators 4 Purposive

Snowball

Academics / experts 4 Purposive Snowball

PATIENTS:

Male (n= 9) Female (n = 23)

32 Purposive Convenient

Focus group interviews (FG) (n=4)

Male (n=1) Female (n =1)

2 Purposive Convenient

Individual interviews (PI)

Male (n=2) Female (n =4)

6 Convenient

Observations: individual consultations

Groups in waiting area (= ± 30-40)

4 Convenient

Observations: health education group sessions

Key informants (health service providers, managers and experts) were initially

sampled purposively because of their involvement with chronic patients, chronic

disease treatment or research. Snowball sampling was added to identify additional

information-rich participants. Sampling continued until data saturation had been

reached.

118

Data collection

Focus group interviews with patients

Focus group (FG) interviews were chosen as data collection method because of

patients’ shared experiences of self-management. Two FGs were conducted per

facility in the preferred indigenous language. In two instances, individual interviews

were conducted, as sufficient patient numbers for a group were not available. All

four FGs had eight members each, with roughly three men per FG, except for one

all-female group. A female community health worker from the same cultural

background had two days of training in being the primary facilitator, with the

primary researcher (LD) and a research assistant present at all FGs. The FGs

lasted approximately 60 minutes, with individual interviews being slightly shorter.

All interviews were audio-recorded and were guided by an interview schedule with

open-ended questions.

Observations of patient consultations and group education

Ten systematic observations of the types of education patients received were

conducted (6 individual patient consultations and 4 group education sessions).

Aspects observed included educational method(s), materials used, assessment of

patient needs prior to the education, level of patient participation, recording of

information by patients, and duration of educational sessions.

Key-informant interviews

The primary researcher (LD) conducted audio-recorded interviews in English with

12 key informants, which included four health service providers at the study

facilities (1 nurse, 1 doctor and 2 health promoters), four chronic disease program

managers at district and provincial level (2 at each level), and four academic

experts in chronic disease (2 providing active care). Program managers and

academic experts were included to provide a better understanding of the context of

chronic-disease self-management promotion in the broader health system.

119

Data management and analysis

The first author (LD) transcribed the key-informant interviews and the fifth author

(NGM), with translation experience from indigenous languages to English,

transcribed and translated the patient interviews simultaneously. A second person

did a peer review of two transcripts to control for accuracy. All direct quotations in

this paper were double-checked for translation accuracy.

Inductive qualitative content analysis was used to analyze the interview transcripts

by means of Atlas.ti 7 software (Mayring, 2014; Scientific software development,

1999). Data analysis occurred in two phases. Two researchers (LD, NGM)

independently analyzed the transcripts to identify manifest content and then

reached consensus on codes and categories to be used. In the second phase, two

researchers (LD, AMB) confirmed the original interpretations and did a further

inductive thematic analysis.

Credibility of data

To ensure trustworthiness of the analysis (Shenton, 2004) several steps were

undertaken. Credibility was enhanced through letting the researchers familiarize

themselves with the research context, using different methods of data collection

and doing frequent member checks during the interviews by summarizing

participants’ contributions. Confirmability was ensured by involving three different

researchers in the data analysis. Transferability was achieved through presenting

thick descriptions and direct quotations to allow for possible application in other

settings.

Ethical considerations

The study received ethical approval from the Research Ethics Committee of the

Faculty of Health Sciences, University of Pretoria (Protocol No. 57/2015) and the

Tshwane District Department of Health (Project No. 15/2015). Participants received

an information leaflet about the study and all voluntarily gave consent, mostly

120

written, but verbally in the case of participants with limited reading abilities. The

patient participants received a small gift equivalent to R30 (±USD2) afterwards as a

token of appreciation for their time.

Results

The findings from the content analysis revealed five issues for patients with a

chronic disease(s) that could have a profound influence on their ability to achieve

self-management: (i) health-system and service-provision challenges, (ii) health-

care provider attitudes and behavior, (iii) adherence to medication and lifestyle, (iv)

patients’ personal and clinic experiences, and (iv) self-management tool prefer-

ences. Table 5.2 provides more detail on the identified themes and categories. In

the quotations below FG refers to focus group and KI to key informant.

Health-system and service-provision challenges

Both patient and key-informant participants referred to challenges related to the

health system and service provision. An important challenge was medication stock-

outs, which could have a major impact on the self-management options of patients.

“I do take treatment and I also drink my pills, but I have got one problem

with one thing. Here at the clinic they are always short of pills for a long

time. Like now, since last time they didn’t have pills. Even now we are here

to collect pills and they only give us those vitamin pills.” (Male FG4)

A further concern was the long waiting times for patients. Participants at one clinic

indirectly alluded to getting emotionally tired while waiting in the queue and saw

this as a possible reason for their high blood pressure when they finally reached

the vitals station:

“That is why you find that, in the queues you wait for a long time;

sometimes your blood pressure goes up while … waiting to be assisted

121

and sometimes they [nurses] go for their tea times and meetings.” (Female

FG4)

Table 5.2 Main themes and categories

Themes Categories


• Medication stock-outs • Long waiting times • Lack of educational materials and equipment • Mind set of providers • Lack of structure

Healthcare provider attitudes and behavior

• Poor communication • Lack of proper check-ups and follow-up • Confidentiality breaches • Poor relations

Adherence to medication and lifestyle changes

• Inconsistency in taking treatment • Poverty • Different food choices of family • Lack of self-monitoring equipment • Financial challenges • Side-effects of medication • Lack of information

Patients’ personal and clinic experiences

• Health education set-up in clinics • Feelings of hopelessness and acceptance of disease • Coping mechanisms • Substituting medication with herbs

Self-management tool preferences

• Booklet • Content

Key informants referred to resources and approaches to care provision as

challenges to self-management. Resource issues related to lack of educational

materials (e.g. pamphlets for patients about their disease) and no dedicated space

to implement physical activity interventions or, where there was space, a lack of

equipment for patient use: “Honestly, we are suffering with chronic disease

materials … it is difficult to implement awareness interventions when we do not

have these things.” (KI-5) Some health workers even ended up photocopying

pamphlets for patients.

Another challenge was healthcare providers’ approach to the provision of care:

122

“The framework or mind-set or the model that the people [healthcare

providers] are trained here is just to give patients medicine and they hope

they will take it and get better … So self-management as a co- vital

component of care is missing in the mind-set of health practitioners [nurses

and doctors].” (KI-7)

As a result, the self-management education given to patients was “… not done in a

structured way. It is not planned; it’s haphazard, you know; it just happens when it

happens.” (KI-7) Because the education was not planned, health service providers

sometimes gave conflicting messages, and there was no adequate follow-up of

patients referred to other health service providers.


Patient participants reported several issues related to the attitudes of nurses

towards them, which had an effect on their self-management. They perceived

communication with nurses to be poor, resulting in patients not feeling free to say

how they felt. One participant commented:

“We communicate with the nurses but when we try to explain something,

they become irritable, saying, ‘You are teaching me my job’. We do not

have a voice.” (Female FG3)

Patients also complained about a lack of proper check-ups and information on their

well-being and expressed a desire for a doctor to explain their disease status:

“They [nurses] do ask us about pain and we tell them, but they do not

check us. The doctor must check us and inform us of the status of our

condition. We need to know what is happening this month.” (Female FG3)

In addition, participants reported confidentiality breaches by nurses:

123

“I once came to the clinic, I fell pregnant while my other baby was still one

year. Instead of the sister [nurse] talking to me nicely in the consulting

room, she waited for me to leave the room and said in front of other

patients: ‘Don’t you know there is something called family planning?’ Just

imagine, other patients sitting there. So it made me angry.” (Female FG4)

Poor relations between nurses and patients also resulted in patients not wanting to

visit the clinic because of the way they had been treated. In one focus group it was

explained as follows:

“One thing I am not satisfied about is that at the blood pressure side. If

they see that your blood pressure is high, they tell you that you are going

to die. This is not nice, especially for someone who does not understand

blood pressure. They might think this is their last day of life.” (Female FG4)


Patient participants highlighted several challenges regarding adherence to

medication and lifestyle changes. One dominant challenge was consistency in the

time of the day for taking medication. A major reason for this was poverty:

“Poverty is also the reason you can’t take medication, because you can’t

take medication on an empty stomach, sometimes there is no bread in the

house.” (Female FG2)

Some participants also reported that they forgot to take their medications on time:

“I sometimes forget to take my medication, like if I’m in hurry, rushing to the mall, I

forget and then take it after some time.” (Female FG1)

A further challenge was adherence to dietary recommendations hampered by

cultural expectations. When visiting other households, patients were expected to

eat the food provided and could not choose something else. At functions like

weddings, cultural expectations were described as follows:

124

“But now when you are maybe at a wedding and you don’t eat the food

there, people will start talking, ‘There he goes again, we know this type. He

doesn’t like eating other people’s food.’ When you eat that food, because

you are now a visitor that is where you make a mistake.” (Male FG2)

Diet challenges at home related to participants’ different food needs than those of

the rest of the family and the unavailability of the right types of food: “It is difficult to

make the children to eat your diet because they want this and that.” (Male FG2)

The problem could even arise at the grocery shop:

“At least at the shops they do have the food that accommodates us. But

when you go for groceries, they [other family members] don’t buy the food

that accommodates you. When you try to buy Tab [sugar-free cola drink],

they would rather buy cold drinks with bad acid in them… you end up

joining the chosen drink.” (Male FG2)

Other lifestyle-change difficulties included a lack of time to exercise and lack of

glucose or blood pressure self-monitoring equipment at home. One participant

reported that, “I was supposed to quit smoking but I didn’t” (PI-1), indicating that he

knew what was the correct thing to do.

Financial challenges existed when employed patients had to go and collect

medication, as this patient reported:

“We work casual jobs. You find that you are only working ten days and on

those ten days they give you one day off to come and collect medication

and [if] you do not get it, you are given another date [at the clinic] and you

still have to take another [day] off for you to collect your medication. And

when you check, you see that you could have actually done something

with that money you lost on the day you were absent.” (Female FG4)

Some patients mentioned not taking their medication because of side-effects: “I

don’t even take my medication if I’m going to town because I know I have to go to

125

the toilet in two hours every ten minutes.” (Female FG1) Other patients reported

coming to the clinic to collect the medication but

“… there are some high blood pills that they changed for us and they are

not treating us well. We get swollen and dizzy, so as she [other participant]

says, she throws them away. We also throw them away.” (Female FG3)

Finally, participants referred to a lack of information about the disease and the

prescribed medication as a factor influencing self-management. One key informant

was of the view, “… that is why our patients do not complete their medication

because they don’t get information, full information.” (KI-5)


On arrival at the clinic, patients received their clinic record on which all the previous

information about their condition was recorded. They handed the record back to

the clerk before leaving the premises. Patients were only allowed to take home a

clinic appointment card with the next appointment date. In most instances, patients

were passive or only partially active. Individual health education in consultations

lasted about two minutes and ad-hoc waiting-area group talks lasted around 30

minutes. Patients had nowhere to record any information conveyed to them and did

not prepare questions in advance.

Patient dispositions influenced the participants’ adherence to self-management

recommendations. Some participants expressed a feeling of hopelessness

regarding their condition, with one commenting that “… there is no victory; you

must just continue like AIDS; you drink medication throughout.” (Female FG2)

Others reported learning to accept their disease(s): “Acceptance is what is helping

us; it is also what motivates us to be here and to check our conditions and take our

medication.” (Male FG2)

Participants reported different ways of coping with their condition, which in turn had

an effect on the way they managed their condition themselves. Some adopted a

126

religious approach: “I ask God and whatever they are doing to me I send it to God.”

(Female FG3) Others had learned to manage and control their emotions, so that

this should not affect their blood pressure:

“At home I stay with my boys; they are orphans and they are my

grandchildren. They are troublesome people, but in most cases I try to stay

calm and not to shout when I am with them.” (Female FG2)

There were also participants who were scared of taking tablets or who replaced

their medication with herbs in order to get better: “I don’t take medication. I drink

some herbs. I can take a week and not drink my medication.” (Female FG3)


Patients and key informants were also asked about the type of chronic disease

self-management tool they believed could make a difference. Most participants

mentioned a booklet for those who could read and write: “I go with a booklet

because you can sit and read. Where you don’t understand, you read again.” (Male

FG2)

Those with limited literacy could be assisted by family members or neighbors in the

“spirit of Ubuntu”, a South African humanity principle where “… most people run to

their neighbors or within the household.” (KI-3) Other suggestions included support

groups, mobile phone messages, and radio and TV programs.

In terms of content and appearance participants suggested that the booklet “…

must be written in different languages so that we can all understand …” (Male FG1)

and it “… must not be too thick because it demotivates [us] to read.” (Female FG1)

It should have pictures to assist those with low levels of literacy and should be

sufficiently motivating to share it with family members. Furthermore, the booklet

should contain information about the diseases and their complications and should

have clear instructions for patients in cases of emergencies.

127

Discussion

The sustainability of health interventions depends on the capacity of stakeholders

(patients and health professional) to participate (Maimela et al. 2015). This study

explored South African chronic patients’ experiences and key informants’

perspectives of self-management in order to identify perceived support needs. A

number of issues were identified concerning self-management education for

chronic patients in primary care. These issues relate to the health system as well

as to patients.

Several hindrances to self-management by patients originate from the health

system and service provision, such as medication stock-outs, long queues and lack

of educational materials. These are issues that the patient and the healthcare

provider do not have control of, no matter their need for self-management. These

results are also reflected in other study results in the South Africa that

demonstrated how medication stock-outs at facilities left the patients stranded

(Maimela, et al. 2015). Other studies have also reported concerns on the lack of

health promotion materials and the use of poor quality photocopies that could

discourage patients to read (Parker, Steyn, Levitt, & Lombard, 2012; Rushforth,

McCrorie, Glidewell, Midgley & Foy, 2016).

Our study highlighted the treatment-and-drug-dispensing approach of health

professionals, with a neglected focus on self-management as a vital core

component. The way in which individual consultations and ad-hoc health

information sessions were conducted – often in noisy waiting areas – highlighted

the need for better patient support for self-management. Patient health education is

haphazard and may result in conflicting or confusing messages received from

different providers. Other South African studies report on the lack of training of

primary healthcare providers in behavior-change counseling skills and recommend

effective training, accompanied by health-system reform that supports health

promotion and self-management (Dube et al, 2015a; Malan, Mash, & Everett-

Murphy, 2015; Murphy, Chuma, Mathews, Steyn & Levitt, 2015).

128

In our study, provider attitudes and behaviors in the form of poor communication

and relations presented as a concern for patients’ motivation for self-management.

Because of poor or absent patient-provider relationships, patients felt obliged to

collect their medication even if they discarded it afterwards. Primary care is the first

contact point of the community with the health system in South Africa. This

highlights the imperative of effective health communication by PHC providers to

make a major difference in self-management (Maimela et al. 2015). The current

absence of patient-centered practice hinders patient self-management, as has also

been reported elsewhere (Everett-Murphy, De Villiers, Ketterer, & Steyn, 2015; Fort

et al. 2013. Rushforth et al. (2016) argue that, although self-management has been

promoted in different settings, PHC providers continue to find it difficult to

effectively share responsibility with patients and to support them to change their

behavior.

Community health nursing lends itself to lead the integration of self-management

into a patient-centered model of care for chronic patients that complements the

other components of care. Therefore, in order to make meaningful collaborations

with patients in self-management, community health nurses need to be aware of

the needs and experiences of the specific target groups of patients they serve. In

chronic diseases, unlike in acute conditions, patients themselves are principal

caregivers and health professionals only act as consultants in supporting the

patients. Although patients may consult with the professionals periodically, much of

the time they are at their homes, making everyday choices that affect their chronic

condition (van Olmen et al. 2011).

In addition to issues within the health services, other barriers to medication and

lifestyle adherence found in our study included poverty, cultural expectations and

family dietary preferences. Participants in our study appeared to lack knowledge on

how to address immediate side-effects of their prescribed medication, resulting in

non-adherence. Patients felt a social obligation to eat whatever was presented and

were also forced to eat the available food because of financial constraints and the

attitudes of family members. Problems with losing weight as a barrier to active self-

129

management were not raised in our study, possibly because gaining weight is

associated with health, affluence and success in South African culture (Kirsten &

Karch, 2012). A lack of social support and financial resources has also been

reported in previous studies as barriers to self-care (Liddy, Blazkho, & Mill, 2014;

Muchiri, Gericke, & Rheeder, 2012).

Study limitations

Our study had a number of limitations. Firstly, patient interviews were not

conducted in English, which limited the degree of rapport building between

researcher and participants. The trained facilitator was, however, fluent in the local

vernaculars. Secondly, more women than men consented to participate. Although

we benefited from mixing genders in the focus groups and discussed topics that

might not have been raised in separate groups, other issues may have been

missed because of the gender mixing. Finally, this study was only conducted in one

part of the Tshwane metropolitan area, although the findings may resonate with the

situation in other areas in South Africa. Further research on the subject of self-

management needs is required in order to add to the knowledge base of culturally

adapted interventions in community health and to inform policy development.

Conclusion

The current study raises awareness of self-management needs and experiences of

patients and healthcare providers in one cultural context in order to improve

community health nurses’ knowledge and skills in working with these patients.

While adherence to medication and lifestyle changes are recognized as important

by patients and providers alike, the two groups have different perspectives and

experiences of treatment and self-management of chronic diseases. In this study,

patients expressed their willingness to be involved and to learn more about their

disease(s), while PHC providers were willing to assist with such an endeavor.

However, more training of community health nurses and other healthcare profes-

sionals as well as changes in the healthcare system are needed to achieve better

self-management support for patients.

130

The findings of this study provide a window of opportunity for the development and

implementation of contextually adapted, structured self-management support

interventions for community health nurses in developing countries. Although self-

management is now regarded as a pillar in the treatment of chronic diseases like

diabetes and hypertension, it is not a panacea for everything.

Acknowledgements

This work was supported by the 2012-2013 doctoral fellowships for development

cooperation of the Université catholique de Louvain and a research assistant grant

from the University of Pretoria.

References

Albreht, T., Dyakova, M., Schellevis, F. G., & Van den Broucke, S. (2016). Many diseases, one model of care. Journal of Comorbidity, 6, 12–20. doi:10.15256/joc.2016.6.xx.

Asmall, S., & Mahomed, O. (2011, June 2014). Integrated chronic diseases management manual. National Department of Health of South Africa. Retrieved June 14, 2015, from: http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf.

Brady, T., Murphy, L., O'Colmain, B. J., Beauchesne, D., Daniels, B., Greenberg, M., et al. (2013). A meta-analysis of health status, health behaviors, and healthcare utilization outcomes of the Chronic Disease Self-Management Program. Preventing Chronic Diseases, 10(E07), 120112. doi:10.5888/pcd10.120112.

Choi, T. S. T, Walker, K. Z., Ralson, R. A., & Palermo, C. (2014). Diabetes education needs of Chinese Australians: a qualitative study. Health Education Journal, 74, 197–208. doi:10.1177/0017896914523276.

de Graft Aikins, A., Anum, A., Agyemang, C., Addo, J., & Ogedegbe, O. (2012). Lay representations of chronic diseases in Ghana: implications for primary prevention. Ghana Medical Journal, 46(2 Suppl), 59–68.

deSilva, D. (2011, 14 March 2015). Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management. Retrieved March 14, 2015, from: http://www.health.org.uk/publication/evidence-helping-people-help-themselves.

Dube, L., Van den Broucke, S., Rendall-Mkosi, K., Kalweit, K., Hosiaux, M., & Dhoore, W. (2015a). An audit of diabetes self-management education programs in South Africa. Journal of Public Health Research, 4, 176–184. doi: 10.4081/jphr.2015.581.

http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf

http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf

http://www.health.org.uk/publication/evidence-helping-people-help-themselves


131

Dube, L., Van den Broucke, S., Hosiaux, M., Dhoore, W., & Rendall-Mkosi, K. (2015b). Type 2 diabetes self-management education programs in high and low mortality developing countries. Diabetes Educator, 41, 69–85. doi: 10.1177/0145721714558305.

Everett-Murphy, K., De Villiers, A., Ketterer, E., & Steyn, K. (2015). Using formative research to develop a nutrition education resource aimed at assisting low-income households in South Africa adopt a healthier diet. Health Education Research, 30, 882–896. doi:10.1093/her/cyv051.

Fort, M .P., Alvarado-Molina, N., Pena, L., Mendoza Montano, C., Murrillo, S., & Martinez, H. (2013). Barriers and facilitating factors for disease self-management: a qualitative analysis of perceptions of patients receiving care for type 2 diabetes and/or hypertension in San Jose, Costa Rica and Tuxtla Gutierrez, Mexico. BMC Family Practice, 14, 131. doi:10.1186/1471-2296-14-131.

Franek, J. (2013). Self-management support interventions for persons with chronic disease: an evidence-based analysis. Ontario Health Technology Assessment Series, 13(9), 1–60.

Kirsten, W., & Karch, R.C. (2012). Global perspectives in workplace health promotion. Sudbury, Masschusetts, United States of America: Jones & Barlette Learning LLC.

Liddy, C., Blazkho, V., & Mill, K. (2014). Challenges of self-management when living with multiple chronic conditions: systematic review of the qualitative literature. Canadian Family Physician, 60, 1123–1133.

Lukewich, J., Mann, E., VanDenKerkhof, E., & Tranmer, J. (2015). Self-management support for chronic pain in primary care: a cross-sectional study of patient experiences and nursing roles. Journal of Advanced Nursing, 71, 2551–2562. doi:10.1111/jan.12717.

Maher, D., Ford, N., & Unwin, N. (2012). Priorities for developing countries in the global response to non-communicable diseases. Globalization and Health, 8, 14. doi:10.1186/1744-8603-8-14.

Mahomed, O. H., & Asmall, S. (2015). Development and implementation of an integrated chronic disease model in South Africa: lessons in the management of change through improving the quality of clinical practice. International Journal of Integrated Care, 15(e038).

Maimela, E., Van Geertruyden, J. P., Alberts, M., Modjadji, S. E., Meulemans, H., Fraeyman, et al. (2015). The perceptions and perspectives of patients and health care providers on chronic diseases management in rural South Africa: a qualitative study. BMC Health Services Research, 15, 143. doi:10.1186/s12913-015-0812-5.

Malan, Z., Mash, B., & Everett-Murphy, K. (2015). A situational analysis of training for behaviour change counselling for primary care providers, South Africa. African Journal of Primary Health Care & Family Medicine, 7(1). doi:10.4102/phcfm.v7i1.731.

Marsiglia, F. F., & Booth, J. M. (2015). Cultural adaptation of interventions in real practice settings. Research on Social Work Practice, 25, 423–432. doi:10.1177/1049731514535989.

132

Mayring, P. (2014). Qualitative content analysis: theoretical foundation, basic procedures and software solution. Klagenfurt, Austria. Retrieved August 26, 2016, from: http://nbn-resolving.de/urn:nbn:de:0168-ssoar-395173.

McKenzie, J., Neiger, B., & Smeltzer, J. (2005). Planning, implementing and evaluating health promotion programs. (4th ed.). San Francisco: Pearson Education Inc.

Muchiri, J. W., Gericke, G. J., & Rheeder, P. (2012). Needs and preferences for nutrition education of type 2 diabetic adults in a resource-limited setting in South Africa. Health SA Gesondheid, 17(1), 1–13.

Murphy, K., Chuma, T., Mathews, C., Steyn, K., & Levitt, N. (2015). A qualitative study of the experiences of care and motivation for effective self-management among diabetic and hypertensive patients attending public sector primary health care services in South Africa. BMC Health Services Research, 15, 303. doi:10.1186/s12913-015-0969-y.

Okop, K. J., Mukumbang, F.C., Mathole, T., Levitt, N., & Puoane T. (2016). Perceptions of body size, obesity threat and the willingness to lose weight among black South African adults: a qualitative study. BMC Public Health, 16, 365. doi: 10.1186/s12889-016-3028-7.

Parker, W. A., Steyn, N. P., Levitt, N. S., & Lombard, C. J. (2012). Health promotion services for patients having non-communicable diseases: feedback from patients and health care providers in Cape Town, South Africa. BMC Public Health, 12, 503. doi:10.1186/1471-2458-12-503.

Rushforth, B., McCrorie, C., Glidewell, L., Midgley, E., & Foy, R. (2016). Barriers to effective management of type 2 diabetes in primary care: qualitative systematic review. The British Journal of General Practice, 66, e114–127. doi:10.3399/bjgp16X683509.

Sargent, G. M., Forrest, L. E., & Parker, R. M. (2012). Nurse delivered lifestyle interventions in primary health care to treat chronic disease risk factors associated with obesity: a systematic review. Obesity Reviews, 13, 1148–1171. doi:10.1111/j.1467-789X.2012.01029.x.

Scientific Software Development. (1999). ATLAS.ti. Version 7. Berlin, Germany: Scientific Sofware Development. Retrieved April, 2015 from http://atlasti.com/.

Shenton, K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22, 63–75.

Steinsbekk, A., Rygg, LØ., Lisulo, M., Rise, MB., & Fretheim, A. (2012). Group based diabetes self-management education compared to routine treatment for people with type 2 diabetes mellitus: a systematic review with meta-analysis. BMC Health Services Research, 12, 213.

Stoilkova, A., Janssen, D. J., & Wouters, E. F. (2013). Educational programmes in COPD management interventions: a systematic review. Respiratory Medicine, 107, 1637–1650. doi:10.1016/j.rmed.2013.08.006.

Healthy People.gov. (2014). Older adults. Retrieved August 20, 2016, from: https://www.healthypeople.gov/2020/topics-objectives/topic/older-adults/objectives#4978.

van Olmen, J., Ku, G. M., Bermejo, R., Kegels, G., Hermann, K., & Van Damme, W. (2011). The growing caseload of chronic life-long conditions calls for a

http://nbn-resolving.de/urn:nbn:de:0168-ssoar-395173

http://atlasti.com/

https://www.healthypeople.gov/2020/topics-objectives/topic/older-adults/objectives#4978

https://www.healthypeople.gov/2020/topics-objectives/topic/older-adults/objectives#4978

133

move towards full self-management in low-income countries. Globalization and Health, 7, 38. doi:10.1186/1744-8603-7-38.

World Health Organization. (2015a). Heatlh in 2015 from MDGs, millenium development goals to SDGs, sustainable development goals. Geneva, Switzerland: World Health Organization. Retrieved January 1, 2016, from: http://apps.who.int/iris/bitstream/10665/200009/1/9789241565110_eng.pdf?ua=1.

World Health Organization. (2015b). Chronic diseases and health promotion. Overview - preventing chronic diseases: a vital investment. Geneva, Switzerland: World Health Organization. Retrieved January 7, 2016, from: http://www.who.int/chp/chronic_disease_report/part1/en/index11.html.

World Health Organization. (2015c). Global status report on noncommunicable diseases, 2014. Geneva, Switzerland: World Health Organization. Retrieved September 2, 2015, from: http://apps.who.int/iris/bitstream/10665/148114/1/9789241564854_eng.pdf?ua=1.

Yam, M. (2013). Does culture matter in body image? The effects of subjective and contextual culture on body image among bicultural women. (Doctoral dissertation). University of Michigan. Retrieved August 20, 2016, from: https://deepblue.lib.umich.edu/handle/2027.42/97941.

http://apps.who.int/iris/bitstream/10665/200009/1/9789241565110_eng.pdf?ua=1


http://www.who.int/chp/chronic_disease_report/part1/en/index11.html



https://deepblue.lib.umich.edu/handle/2027.42/97941

135

CHAPTER 6: Development of a care-plan booklet

Development and intended use of a prototype individual

care-plan booklet

136

Introduction

It is well accepted that the capacity of chronic patients to self-manage their illness

has positive effects on clinical outcomes, quality of life and health service use (1-4).

For this reason, self-management education is generally recommended as part of

the treatment. However, while nearly all existing self-management education

programs have been developed in western, resourceful countries, there is a paucity

of literature related to the question whether these programs also meet the needs of

patients in resource-limited countries like South Africa (5, 6). A study of the self-

management support needs of patients with chronic diseases in a South African

township (7) revealed that most patients preferred an individual booklet written in

their own language, containing information about the diseases and their complica-

tions in easy language and with visual illustrations, and with clear instructions in

cases of emergencies. This chapter describes the development of such a care-plan

booklet.

The care-plan booklet builds on the three studies reported in Chapters 3, 4 and 5.

First, the systematic review of diabetes self-management education (DSME)

programs in high- and low-mortality developing countries revealed that most

published studies on DSME were done in low-mortality developing countries, and

that only a handful of studies originated from high-mortality developing countries

(5). Moreover, only some of the programs described in these studies were

accessible to people with lower levels of literacy and for many interventions the

sustainability of the effects was of concern due to the lack of tailoring to the target

population.

Secondly, the audit of DSME in South Africa (8) gave an overview of the policies

and programs for diabetes self-management that exist in the country. This study

showed that there was no policy supporting DSME in South Africa and that DSME

was rarely mentioned in guidelines. In reality, DSME is mostly unplanned, unstruc-

tured and given on an ad-hoc basis. During consultations, patients do not have

137

anywhere to record the advice that is given by the health provider, and patients are

mostly passive recipients of this information.

Thirdly, the study on the self-management needs of chronic patients in two primary

healthcare (PHC) facilities in an urban township in South Africa (7) explored the

views of both patients and experts on the challenges to self-management, and

gave information on a preferred tool that could assist the education of self-

management skills. As reported in Chapter 5, participants in that study considered

a booklet as a preferred tool to assist them in increasing self-management skills.

The preference for a care-plan booklet as a tool for self-management education is

in line with findings in the literature that point to the usefulness of printed materials

in aiding the patient to remember some of the information given during a

consultation (9). However, simply enhancing the capacity of patients to remember

the information given by healthcare providers is not enough: as shown in the

literature, printed materials are not very effective in changing health related

behavior when they are used on their own, and only provide an added value when

they complement the interactions between patients and providers. This is

supported by the findings of our study on the self-management needs of chronic

patients presented in Chapter 5, which revealed several challenges in the

interaction between patients and providers. To address some of these challenges,

it is necessary to improve the interaction and communication between patients and

providers. Hence, the care-plan booklet that was developed for this study was not

just an information tool, but also a vehicle for facilitating the interaction between

patient and provider during a medical consultation, as well as that with family and

friends at home. To that effect, it combines health information with a care-plan.

Moreover, as low health literacy is a factor that hinders the understanding of

information and the usability of existing information supports, it was decided to

illustrate the content of the care-plan booklet with pictures. While it was also

suggested to use the local languages to help those with low levels of education,

this suggestion could not be taken up due to lack of resources. However, patients

138

who had low literacy levels indicated that they could ask their children or family

members to read for them.

This chapter introduces the prototype individual care-plan booklet for people with

type 2 diabetes mellitus and hypertension (high blood pressure). It also describes

the literature and the rationale behind the development of the care-plan booklet, its

intended use and how it was evaluated. The prototype booklet was only available

for diabetic and hypertensive patients. The assumption was that if the use of this

care-plan booklet was found to be acceptable and potentially effective in improving

the provider-patient relationship – which will in turn lead to improved health

outcomes – it could be expanded to include other chronic diseases seen at PHC

level. As a starting point, diabetes and hypertension were selected as the condi-

tions to include in the booklet, as these patients are mostly seen at PHC centers

every day.

Printed materials for health education

Health education is defined by the World Health Organization (WHO) as “any

combination of learning experiences designed to help individuals and communities

improve their health, by increasing their knowledge or influencing their attitudes”

(10). Several health communication strategies are used to assist patients in

promoting healthy behavior. These strategies include groups or individual inter-

ventions, telephone communication, websites and printed materials. For the last

part of the broader study, we focused on printed materials, as the needs assess-

ment among chronic disease patients had indicated a desire for a care-plan

booklet (see Chapter 5).

Printed materials are regarded as a necessary requirement for the participation of

patients in healthcare, although there are reservations about their potential impact

on health outcomes if used in a stand-alone fashion (11). A systematic review by

Paul and Redman indicated that printed materials can be effective in changing

behavior, knowledge and attitudes in health matters, but that the effectiveness

depends on various aspects of their implementation (12). These factors include, for

139

example, if pamphlets are used alone or as a supplementary to another

intervention. Pamphlets are likely to be more effective when used in patient

education compared to using them to influence the general public and are also

more effective in achieving knowledge and attitudes change than behavior change

(12, 13). Printed materials are also beneficial to patients even when not interacting

with physicians, because patients can seek answers from written materials and can

choose the amount of information and the level of detail that suit their coping

strategies (9).

Bonevisk and Newell (13) did a review on the effects of distributing written health

education materials and found that distribution of printed material by healthcare

professionals led to a high number of people keeping the material and recalling the

receipt of materials. It was concluded that there are higher rates of reception and

readership if pamphlets are distributed by healthcare professionals, although it is a

slower method than mailing.

While printed materials can aid in the promotion of health, their effects are

influenced by the patient’s level of health literacy. This is especially the case for

resource-limited settings, where inadequate health literacy is often endemic, but

appears to be under-researched (14, 15). As defined earlier, health literacy entails

“people’s knowledge, motivation and competence to access, understand, appraise

and apply health information in order to make judgements and take decisions in

everyday life concerning healthcare, disease prevention and health promotion to

maintain or improve quality of life during the life course” (16) (p. 3). Houts et al.

noted that understanding and using health information is challenging for people at

all levels of literacy, but even more so for people with limited literacy skills (11).

Health literacy does not only entail reading and understanding health information,

but also involves empowerment of patients (17). Low health literacy is associated

with poor health status, poor treatment adherence, high rates of hospital

admissions and poor preventive strategies (17).

140

The available evidence suggests that well-designed written information can be

useful in aiding professional consultation and improving health knowledge and

recall (17). The review by Houts et al. shows that the use of pictures helps to draw

the attention to the education materials and has a positive effect on intentions and

health-related behavior (11). Moreover, spoken information supported by pictures

is recalled better by people with low literacy levels.

Health professionals play a crucial role in the provision of educational and self-help

programs. In fact, interventions that provide information only (without the involve-

ment of health professionals) are not very successful (17). A review by Eakin et al.

indicated that programs with health professional involvement are especially more

effective for disadvantaged populations (18). Materials with health information are

also more effective when they complement rather than replace the interaction

between patients and providers. To improve self-management skills, patients need

on-going support from their health providers and this support is crucial for their

success (17).

According to Fu et al, healthcare providers are seen as primary facilitators of the

patient’s self-management skills, especially in PHC settings, as the demand for

self-management in chronic care increases (19). The collaboration between

patients and providers in self-management could be seen as a therapeutic exercise

where providers assist in validating patients’ ideas and develop individual care

plans aimed at improving patients’ health. In a study on chronic pain, patient-

provider partnerships were seen to stimulate and nurture the internal resources of

patients that led to behavior change (19).

The Health Belief Model

While the development of the care-plan booklet was triggered by an existing self-

management tool for chronic patients (see below), it was also theoretically

underpinned by the Health Belief Model (HBM). The HBM was developed in the

1950s to explain the unsuccessful efforts of the United States Public Health

141

Services in the treatment of tuberculosis. Since then the HBM has been one of the

most often-used exploratory models in health education and health promotion and

has been applied to a large range of health behaviors. The main assumption of the

HBM is that health-related behavior is determined by an individual’s beliefs about

the threats posed by a disease and the possibility to prevent these threats from

happening. The theory has four main constructs: perceived severity; perceived

susceptibility; perceived benefits; and perceived barriers. More recently, the model

has been expanded to also include cues to action, motivating factors and self-

efficacy (20-23).

Perceived severity concerns a person’s belief about the seriousness of a disease

(for instance, diabetes or hypertension) and its consequences on their life. The

consequences can include pain, financial problems, inability to work or the

development of diabetes or hypertension complications (20, 23).

Perceived susceptibility refers to an individual’s perception of the chances of

getting a disease. If the risk is greater, then there is a greater likelihood of taking up

behavior to decrease the risk. For instance, if patients perceive a greater risk of

developing diabetes or hypertension complications they are more motivated to

change their lifestyles to avoid or delay these complications. However, research

shows that sometimes the perception of susceptibility does not lead to behavior

change. For example, knowing that one has an increased risk of developing skin

cancer does not stop people from tanning (20, 24). The perception of susceptibility

combined with the perception of severity, results in a perceived threat, which can

lead to a change in behavior. For example, most children whose parents are

diabetic and who perceive a threat of developing non-insulin dependent diabetes

engage in weight control measures (25).

A perceived benefit is the belief that taking action (changing life style behavior) will

decrease the seriousness of the disease, such as diabetes or hypertension. It is

more likely that people will take up behavior when they believe that it will work for

them. Perceived barriers, on the other hand, refer to circumstances that might

142

hinder the person to take up the new behavior. Some studies suggest that out of all

the constructs of the HBM, perceived barriers is the one that most determines if

one will take up the new behavior (23). Barriers can include fear of not being

successful, or fear of embarrassment. If the benefits outweigh the costs of adopting

the new behavior, it is more likely that the person will change behavior (20, 21).

The possibility of adopting a new behavior based on the HBM is modified by

personal factors, including cues to action and self-efficacy. Cues to action are

contextual factors to which the person is exposed and which help to elicit the

action. For example, a reminder from a health service provider to exercise or a

family member developing a complication of the same disease will elicit self-

management behavior. Self-efficacy involves an individual’s confidence in his or

her capacity or ability to perform the behavior or action successfully. In principle,

individuals normally do not try out an action unless they believe that they can do it

(20, 22, 23).

The prototype care-plan booklet

Development of the booklet

The trigger for the development of the care-plan booklet was an existing general

self-management tool of Curo Health (26), a non-governmental organization (NGO)

based in Pretoria, South Africa. Their booklet is built upon the principles of the

Stanford University Chronic Disease Self-Management Programs (CDSMP) which

is based on the theory of self-efficacy (see Chapter 1). The Curo Health booklet is

a carry-home booklet for patients. In addition to information about the disease and

its management, it contains tables about which the patient and provider can

discuss during a consultation, as well as spaces where the patient can write down

questions for the provider as a preparation for the consultation. Although, the Curo

Health booklet was already used in consultations between patients and healthcare

providers in the private healthcare sector, it has never been evaluated. Moreover,

its usability in the public health sector, with patient of lower socio-economic status

and lower health literacy, could be a point of concern. Therefore, the Curo Health

143

booklet inspired the development of the new care-plan booklet which fits the

context of the target population. The HBM which underpins the development of the

current booklet (see above) is a more advanced and elaborate theory which also

improves the care-plan booklet. Table 6.1 shows the major differences between the

original care-plan booklet and the new prototype care-plan booklet. Existing

pamphlets on diabetes and hypertension available in PHC clinics were also

consulted for additional information (27, 28).

The main changes include the addition of more information on the relevant

diseases (diabetes and hypertension) and the national guidelines for normal levels

of glucose and blood pressure (for patients to compare against their own). A

section was also added for recording vital signs for patients to monitor themselves.

The latter can be used by the patient to prepare for the consultation, ask questions,

and improve the interaction with the healthcare provider. Furthermore, pictures

were added that were compatible with the township context. While the language of

the pilot care-plan booklet remained English, it is envisaged that the final version to

be used in a larger-scale project will be translated into other South African

languages.

Table 6.1 Differences between the Curo Health care-plan and the new proto-type care-plan booklet

Contents Curo Health

booklet New booklet

The pledge √

Information on how to use the booklet √

National guidelines on target values √

Definition of a chronic disease √

Tips how to make most of the medical consultation (for patients) √

Preparing for the consultation X 4 √ √

During the consultation (discussion with provider) X 4 √ √

Vitals signs table for each consultation √

Emotions chart (to assist in the discussion with the provider) √

Brief information on diabetes and high blood pressure (incl. complications)

√

144

Contents Curo Health

booklet New booklet

Health messages for both diabetes and high blood pressure √

Messages on physical activity √

Treatment record √ √

Contact details of patient √

Details of providers √

The vicious cycle of symptoms √

Unnecessary pictures √

Description of the prototype care-plan booklet

The care-plan booklet focuses on diabetes and hypertension and is intended to be

used with health service providers during consultations. It has an A5 format with

light green pages. The cover has a picture of an older couple and a space for

patients to write their name, contact number and clinic name in case the booklet

gets lost. The prototype care-plan booklet covers the following content:

• How to use the booklet

• Glossary of terms (with translations in Zulu and Sepedi)

• Making most of the medical consultation (tips for patients)

• Information on diabetes and hypertension

- Definition

- Physiology

- Signs and symptoms

- Complications

- Health education messages

• Lifestyle change messages

• Body mass index table

• Preparing for the consultation

- Tables for recording vital signs by healthcare providers

- Tables for use in provider-patient consultation

• Spaces for referral notes

• General notes by healthcare provider

• Pocket for appointment card at the inside back cover

• Emergency telephone numbers on outside back cover

145

The first part of the booklet, which consists of 18 pages, contains information about

diabetes and hypertension and their complications and advice on diet and exer-

cise. Pictures are used to aid the reader and to assist those with low levels of

literacy. Pages 19 and 20 present the national guidelines and target glucose and

blood pressure values. A table for body mass index (BMI) is also included. Pages

22 and 27 contain pages for preparation and discussion with the provider for use

during a consultation and a space is also provided for recording vital signs.

Page 28 provided tables for use by other healthcare providers to whom a patient

might be referred. The last two pages provide a space for general notes where the

healthcare provider can, for example, record the referral and results of required

tests such as foot and eye tests. The inside of back cover page is equipped with a

pocket for keeping a clinic appointment card.

Although the study on needs assessment indicated that the care-plan booklet must

preferably be written in the local language, for the purposes of this study the

prototype care-plan booklet was developed in English only. This was a decision

made for convenience: since there are 11 official languages in South Africa,

translation in all languages would have been too costly and time-consuming.

However, English is one of the official languages of South Africa and the language

of schooling, and most people comprehend basic simplified English.

Contextual issues considered in the development of the booklet

In Chapter 2 we discussed the context in which this project was carried out. This

context was an important element in the development of the care-plan booklet and

its intended use in the primary healthcare facilities. Particularly, the fact of a

westernized and traditional healthcare system running parallel to each other, both

of which can be accessed by chronic disease patients, is of interest, as it may

result in patients receiving conflicting messages (7, 29). As such, the care-plan

booklet can serve as an interactive tool that enables patients to discuss issues that

they do not understand or about which they are confused. For instance, the study

reported in the Chapter 5 revealed that because of poor communication between

146

healthcare providers and patients, the latter sometimes throw away medication

after collecting it because they believed it made them sicker (7). Other patients

indicated that they were mixing their medication with herbs. The inclusion of tables

for recording vital signs and for recording items to be discussed during

consultations allows monitoring medication use more systematically and helps in

resolving conflicting issues.

The booklet also contains practical information about the two diseases, which the

patients can discuss at home with other family members. This is important because

as a support system, family members have a strong influence on the patients’ self-

management behavior. Their knowledge about the disease and about the

appropriate actions can be an importance facilitator or barrier to the patient’s self-

management capacity. For example, a family member who is well informed about

the signs and symptoms of diabetes and of the possible complications of the

disease can help the patient decide on seeking help at the clinic facilities. In this

way, both the care-plan booklet and the communication during consultation can

counter harmful beliefs on the part of both the patients and their families, and as

such help the patients to better manage their conditions.

Since the care-plan booklet was developed to fit the context of the target

population, certain contextual features were included, for example:

Allowing to share the care-plan at home

Allowing to share the care-plan with the healthcare provider

Allowing assistance by family and friends for those with low levels of

literacy

Not including sensitive information in the booklet

Writing the booklet in simple, basic English

147

Aim and objectives of the care-plan booklet

The aim of the care-plan booklet is to enhance the interaction between patient and

provider by providing a structure for the medical consultation. The objectives are:

To provide a low-cost information tool on diabetes and hypertension

suitable for resource-limited settings

To enhance patient knowledge and health literacy to better understand

diabetes and hypertension.

To provide a vehicle to facilitate patient-provider interaction during medical

consultations to assist in self-management.

To provide a tool to help patients monitor relevant self-care behaviors.

Assumptions about the use of the care-plan booklet

The care-plan booklet is not an intervention in itself and should not be used as

such. It is meant to be part of a broader, already existing intervention for the

treatment and care of diabetic and hypertensive patients. Therefore, it would be

inappropriate to expect health outcomes changes or behavior changes on the

basis of the information provided in this care-plan booklet alone. The health service

providers involved have to be trained in behavior counseling techniques in order to

be able to make maximum use of the booklet and for the patient to benefit from

using the booklet. Therefore, the health service providers and the patients have a

role to play in using the booklet during a medical consultation. The care-plan

booklet is not provider-oriented, but can be seen as a facilitator of the

communication process that also builds or enhances the capacity and skills of the

patient. Through preparing for each consultation and by following the treatment

process, the patient can become aware of where he or she is and where he or she

needs to go.

148

The role of patients

As self-management requires patients to be more than passive receivers of

information, patients have a crucial role to play in the use of this care-plan booklet.

To begin with, the patient should bring the booklet to every medical consultation.

Patients may record questions they have and if they do not understand some of the

information, they may ask the health service providers during consultation. Patients

may also share the care-plan booklet at home with family members or neighbors to

improve their understanding of the disease.

The role of health service providers

Although the care-plan booklet is a carry-home tool for patients, healthcare

providers are expected to make active use of the booklet during consultations.

Each diabetic or hypertensive patient will bring the booklet along to each

consultation. The health service providers will record the vital-signs values in the

booklet.

When the patient consults with a professional nurse or doctor, the booklet will be

used to assist in the discussion. For example, the patient might have pre-recorded

questions to be addressed to the healthcare provider during consultation and the

booklet will serve as a reminder. A provider might also start the discussion by

focusing on the comparison of the vital signs with the recommended value and ask

the patient why he or she thinks they are like that. The emotion pictures included in

the booklet can be used as a starting point for health service providers to ask

patients how they feel and why they feel that way.

Together with the patient, the healthcare provider can use the spaces in the

booklet to draw up a care plan that can be referred to and reviewed at each visit.

The provider can also refer to the topics already included in the care-plan booklet

or explore together with the patient any difficult issues that need more explanation.

149

Conclusion

In this chapter we have presented the care-plan booklet that was developed to

provide a low-cost, context-specific self-management tool for diabetes type 2 and

hypertension that is suitable for use in resource-limited settings in South Africa.

The tool aims to enhance patient knowledge and understanding of diabetes and

hypertension while being attentive to low (health) literacy, to provide a vehicle to

facilitate patient-provider interaction during medical consultations, and to provide a

tool to help patients monitor relevant self-care behaviors, with a view to enhance

the patients’ self-management skills. This care-plan booklet is not an intervention

on its own, but a tool to be used within the structure of broader, already existing

treatment and care for diabetes or hypertension. As a basis for its development,

the literature on the use of printed materials in patient education was briefly

discussed, as well as the theoretical model that underpinned the development of

the booklet, which gave a rationale to its development. Furthermore, a description

of the care-plan booklet and of its aims and objectives was provided, as well as a

detailed description of how the care-plan booklet should be used by patients and

providers.

As a next step, the care-plan booklet was and will be evaluated in a series of

studies. The next two chapters (Chapter 7 and 8) each present a study that

addressed an aspect of that evaluation. Chapter 7 reports on the qualitative data

collected on the feasibility of implementing this care-plan booklet in PHC settings in

South Africa. Chapter 8 describes the results of a quasi-experimental study

investigating the potential effects of the care-plan booklet in patient-provider

interactions in terms of improving the health literacy and disease-specific

knowledge of diabetic and hypertensive patients. Finally, in Chapter 10, a

comprehensive protocol will be presented for a randomized controlled trial in which

the care-plan booklet will be further evaluated.

150

References

1. Brady TJ, Murphy L, O'Colmain BJ, Beauchesne D, Daniels B, Greenberg M, et al. A meta-analysis of health status, health behaviors, and healthcare utilization outcomes of the Chronic Disease Self-Management Program. Prev Chronic Dis 2013;10(E07).

2. Franek J. Self-management support interventions for persons with chronic disease: an evidence-based analysis. Ont Health Technol Assess Ser. 2013;13(9):1-60.

3. Steinsbekk A, Rygg L, Lisulo M, Rise M, Fretheim A. Group based diabetes self-management education compared to routine treatment for people with type 2 diabetes mellitus. A systematic review with meta-analysis. BMC Health Serv Res. 2012;12(213).

4. Stoilkova A, Janssen DJ, Wouters EF. Educational programmes in COPD management interventions: a systematic review. Respir Med. 2013;107(11):1637-50.

5. Dube L, Van den Broucke S, Housiaux M, D'Hoore W, Rendall-Mkosi K. Type 2 Diabetes selfmanagement education programs in high and low mortality developing countries. Diabetes Educ. 2015;41(1):69-85.

6. Choi TST, Walker KZ, Ralson RA, Palermo C. Diabetes education needs of Chinese Australians: a qualitative study. Health Educ J. 2014;74(2):197-208.

7. Dube L, Van den Broucke S, Bergh A-M, Mafutha N, Rendall-Mkosi K. Self-management support needs of patients with chronic diseases in a South African township: a qualitative study. J Community Health Nurs. In Press.

8. Dube L, Van den Broucke S, Rendall-Mkosi K, Kalweit K, Housiaux M, D'Hoore W. An audit of diabetes self-management education programs in South Africa. J Public Health Res. 2015;4(581):176-84.

9. Hoffmann T, Worrall L. Designing effective written health education materials: considerations for health professionals. Disabil Rehabil. 2004;26(19):1166-73.

10. World Health Organization. Health topics: health education [Internet]. 2016 [cited 18 October 2016]. Available from: http://www.who.int/topics/health_education/en/.

11. Houts PS, Doak CC, Doak LG, Loscalzo MJ. The role of pictures in improving health communication: a review of research on attention, comprehension, recall, and adherence. Patient Educ Couns. 2006;61(2):173-90.

12. Paul C, Redman S. A review of the effctiveness of print material in changing health-related knowledge, attitudes and behaviour. Health Promot J Austr. 1997;7:91-9.

13. Bonevski B, Newell S. Development of written health education materials: a review. New Castle: Hunter Centre for Health Advancement Research Seminar; 1999.

14. Dowse R. The limitations of current health literacy measures for use in developing countries. J Commun Healthc. 2016;9(1):4-6.

151



17. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ (Clinical research ed). 2007;335(7609):24-7.

18. Eakin EG, Bull SS, Glasgow RE, Mason M. Reaching those most in need: a review of diabetes self-management interventions in disadvantaged populations. Diabetes Metab Res Rev. 2002;18(1):26-35.

19. Fu Y, Yu G, McNichol E, Marczewski K, Jose Closs S. The effects of patient-professional partnerships on the self-management and health outcomes for patients with chronic back pain: a quasi-experimental study. Int J Nurs Stud. 2016;59:197-207.

20. Cao ZJ, Chen Y, Wang SM. Health belief model based evaluation of school health education programme for injury prevention among high school students in the community context. BMC Public Health. 2014;14:26.

21. National Cancer Institute. Theory at a glance: a guide for health promotion practice. 2nd ed. NIH Publication No. 05-3896 [Internet]. U.S Department of Health and Human Services, National Institutes of Health; 2005 [cited 22 September 2015]. Available from: http://www.sbccimplementationkits.org/demandrmnch/wp-content/uploads/2014/02/Theory-at-a-Glance-A-Guide-For-Health-Promotion-Practice.pdf.

22. Abraham C, Sheeran, P. The Health Belief Model. In: Conner M, Norman, P, editor. Predicting and changing health behavior. 3rd ed. Berkshire: McGraw-Hill Education; 2015.

23. Raingruber B. Contemporary health promotion in nursing practice. Burlington: Jones & Bartlett Learning, LLC; 2014.

24. Lamanna LM. College students' knowledge and attitudes about cancer and perceived risks of developing skin cancer. Dermatol Nurs. 2004;16(2):161-4, 175-6.

25. Forsyth LH, Goetsch VL. Perceived threat of illness and health protective behaviors in offspring of adults with non-insulin-dependent diabetes mellitus. Behav Med. 1997;23(3):112-21.

26. Curo Health. Individual care plan booklet. 2015. 27. Department of Health, South Africa. Nutritional management of

hypertension [Pamphlet]. 28. Department of Health, South Africa. Nutritional management of diabetes

[Pamphlet]. 29. Maimela E, Van Geertruyden JP, Alberts M, Modjadji SE, Meulemans H,

Fraeyman J, et al. The perceptions and perspectives of patients and health care providers on chronic diseases management in rural South Africa: a qualitative study. BMC Health Serv Res. 2015;15:143.

153

CHAPTER 7: Feasibility study

Feasibility of a self-management tool for diabetes and

hypertension in South Africa

Submitted for publication as:

Dube L, Bergh A-M, Van den Broucke S, D’Hoore W. Feasibility of a self-

management tool for diabetes and hypertension in South Africa.

154

Summary

The continuous rise of non-communicable diseases, especially diabetes and

hypertension, creates a double burden of diseases in low- and middle-income

countries. As self-management support enables patients to take an active role in

managing their own condition and is a cost-effective way to address the chronic

disease burden, there is a need for contextually appropriate self-management

support tools. This qualitative study explored the feasibility of using a contextually

adapted self-management care plan booklet for diabetes and hypertension for use

in medical consultations. Focus group and individual interviews with patients and

healthcare providers were conducted in three primary healthcare facilities. Eight

focus areas for feasibility studies were used as the lens for data analysis:

acceptability, demand, implementation, practicality, adaptation, integration,

expansion and limited-efficacy testing. The study revealed a high acceptance of

the booklet by both patients and providers. Patients reported that the booklet

increased their knowledge of their conditions, indicated that they would share the

booklet with friends and families, and expressed the need to use it with their

providers. Providers mentioned that community health workers and health

promoters could play an important role in implementing the tool. The findings of this

study contribute to the knowledge base needed for the development and adoption

of the self-management component of the South African integrated chronic

diseases model. The care plan booklet can be used to stimulate the interaction

between patients, providers and/or family and friends.

Key words: cultural adaptation; self-management; diabetes and hypertension;

feasibility study; South Africa

155

Introduction

As chronic diseases continue to rise in both industrialized and non-industrialized

countries, it has become crucial for healthcare systems to shift from paternalistic

models of care to models involving a partnership between patient and healthcare

professionals (Bodenheimer et al. 2002). Partnership models focus on self-

management education and collaborative care, where patients take an active role

in the management of their own disease(s) (deSilva, 2011; Bodenheimer et al.

2002; Von Korff et al. 1997). The purpose of providing self-management support is

to enable patients to take an active role in managing their own condition, which is

different from patient education (Foster et al. 2007).

A strong focus on self-management has been shown to be cost effective and to

increase patient adherence to medication and the uptake of healthy behaviors,

which can help to improve population health (Mills et al. 2016; deSilva, 2011;

Cunningham, 2016). However, one of the challenges for self-management support

programs is their implementation in underserved communities. Not only are such

programs less often organized for these communities, even when they are

available through health centers, but the specific individual needs of chronic

patients related to their social environment and cultural background are often

neglected (Mills et al. 2016).

This also holds true for self-management programs in developing countries.

Whereas the epidemiological shift of the burden of disease from infectious to

chronic disease that has been noted in most developing countries can largely be

attributed to the transition from traditional to western lifestyles (Levin-Zamir et al.

2016), the same cannot be said for chronic disease self-management (Puoane et

al. 2008). Even relatively universal problems have to be addressed differently

because of varying socio-economic and cultural contexts (Van den Broucke, in

press). Therefore, self-management programs and materials that have been

developed in western countries need a contextual adaptation that is sensitive to the

needs of communities in developing countries before they can be implemented.

156

To find out if adaptations of programs take the cultural context sufficiently into

account, feasibility studies can be done. Feasibility studies in the field of health

promotion are often conducted to investigate if all the components of a bigger

intervention work properly in a given context, and their findings provide a basis to

decide whether an intervention is worth further testing for efficacy. Knowledge

about the feasibility and acceptability of an intervention does not guarantee

effectiveness, but can increase the possibility of an intervention being liked,

comprehensive, accepted, remembered, credible and attractive (Vandelanotte et

al. 2004). According to Bowen et al (2009), feasibility studies can focus on different

areas, including acceptability, demand, implementation, practicality, adaptation,

integration, expansion and limited-efficacy testing, depending on the research

question.

The aim of this study was to explore the feasibility of using a contextually adapted

individual care plan booklet as a self-management support tool for diabetes and

hypertension during medical consultations in a South African community. The

experiences and views of patients and healthcare providers were elicited to assess

the feasibility of the tool’s implementation. To our knowledge, no previous study

has systematically evaluated the feasibility of the use of a self-management

support tool for chronic patients in a developing country. The study built on the

findings from two previous studies (Dube et al. 2015; Dube et al. submitted) that

had acquainted the researchers with the current status with regard to diabetes self-

management education programs in South Africa and with the perceived needs of

the target population in terms of self-management support.

The intervention

The intervention involved the development of a prototype individual care plan

booklet in A5 format for use by providers and diabetic and/or hypertensive patients

during medical consultations. The content of the booklet was informed by the

needs of the patients identified in a previous study (Dube et al. 2015; Dube et al.

submitted). As revealed by this study, patients did not have an opportunity to

prepare questions for a consultation with the provider, had no means to record the

157

advice of the physician, and did not have a take-home individual care plan; while

providers did not have enough educational materials to support patients in the self-

management of their disease. The format of the booklet was informed by a more

general booklet used in South Africa (Curo Health, 2015, unpublished). Other

materials were also used, including the few already existing pamphlets on the

specific disease conditions (Department of Health South Africa, unpublished). A

first draft of the booklet was circulated to different stakeholders who commented on

its content, after which the prototype booklet was finalized for the study. The

booklet was only available in English, which is one of the official languages in

South Africa and the language of schooling.

The prototype booklet included the following topics:

• How to use the booklet

• Glossary of terms (with translations in Zulu and Sepedi)

• Making most of the medical consultation (tips for patients)

• Information on diabetes and hypertension

- definition

- physiology

- signs and symptoms

- complications

- health education messages

• Lifestyle change messages

• Body mass index table

• Preparing for the consultation

- tables for recording vital signs by healthcare providers

- tables for use in provider-patient consultation

• Spaces for referral notes

• General notes by healthcare provider

• Pocket for appointment card at the inside back cover

• Emergency telephone numbers on outside back cover

Method

The Research Ethics Committee of the Faculty of Health Sciences, University of

Pretoria (protocol 57/2016) and the Tshwane District Research Ethics Committee

(Project 15/2016) approved the research.

158

Study design

A qualitative study design was used to explore the views and perspectives of the

participants on the feasibility of using an individual care plan booklet integrated in

the consultations with providers. The study was designed to answer the question if

the intervention could work, and more particularly to understand how the use of the

booklet could fit with the daily-life activities of healthcare providers and patients

(Bowen et al. 2009).

Sampling and recruitment

The study was conducted in three community healthcare facilities and had two

distinct groups of participants, an intervention group and a ‘comments-only’ group.

The intervention group consisted of diabetic and hypertensive patients and

healthcare providers (nurses and doctors) in an urban community health center

(CHC) that had been part of the previous study on self-management needs (Dube

et al. submitted). The providers in this group were trained on the use of the booklet

with patients as part of the existing consultation process. The comments-only

group was composed of diabetic and hypertensive patients and healthcare

providers (doctors, nurses, dieticians and health promoters) recruited in a CHC in a

rural setting and in a primary healthcare clinic in the same area as the intervention

site. They were asked to provide comments on the content and possible use of the

booklet. The reason for including a comments-only group was to elicit a wider

variety of views, as it was not practically possible to include more sites and

participants in the intervention group.

The patients participating in the intervention and comments-only groups received

primary care services at the three study facilities. To be included, patients had to

be 18 years or older with diabetes and/or hypertension, and able to read and write

or have someone at home to assist with reading and writing. Health providers were

included because they are important to the success of the integration of

interventions like these (Lake and Staiger, 2010). At the intervention CHC, patients

were purposively selected to only include diabetic and/or hypertensive patients with

159

uncontrolled values and who would return for follow-up within one month. Doctors

and nurses identified qualifying patients and, after issuing the booklet, referred the

patients to the researchers who then explained the purpose of the study and

sought written informed consent. At the two facilities where comments-only

participants were sampled, diabetic and hypertensive patients were recruited from

the queue while waiting for a medical consultation. Those who gave written

informed consent were included.

All doctors and nurses caring for chronic patients in the three study facilities were

invited to participate. A sample of dieticians and health promoters were

conveniently selected for an invitation to participate. All provider participants also

gave informed consent before being included in the study.

More females than males participated in both study groups. Participants’ ages

ranged between 29 and 98 years. The majority of participants were Sepedi,

Setswana, isiZulu and isiNdebele first-language speakers. More than half the

participants were married or lived with a partner. More participants in the

intervention group completed 12 years of schooling than in the comments-only

group. Half of the intervention-group participants were employed compared to less

than one fifth in the comments-only group. Nurses were participants’ main source

of information, followed by radio, and magazines and books. Supplementary file 1

contains more information on the demographic characteristics of participants.

Data collection strategy

In both study groups, focus group and individual interviews were held with patients

and providers by means of interview guides. The choice of method was determined

by the availability of participants. Focus groups are considered an appropriate

method to collect evidence for the acceptability of an intervention (Bowen et al.

2009).

In the intervention group, the interviews took place after one month and after

patients and providers had used the booklet in consultations. Questions focusing

160

on the content and experiences of using the booklet were included in these

interviews. In the interviews with the comments-only group, the focus was on

content and potential use of the booklet. All patient participants completed a short

demographic questionnaire (see supplementary file 1).

A total of 10 focus groups and 7 individual interviews were conducted. Sixteen

patients and 8 providers in the intervention group participated, whereas there were

32 patient participants and 9 providers in the comments-only group. Interviews

lasted between 12 and 45 minutes and were audio-recorded. Audio-recordings

were transcribed and, where needed, translated and cross-checked by researchers

fluent in the vernacular languages.

Data analysis

Using a framework by Bowen et al. (2009) for the design of feasibility studies as a

point of departure, the data were first organized according to the eight focus areas

under the topic “Can the intervention work?”

• Acceptability: reaction of target population

• Demand: likelihood of using intervention

• Implementation: applicability of intervention

• Practicality: execution of intervention with limited resources

• Adaptation: altering intervention for new populations

• Integration: how new intervention can be accommodated within existing

structures

• Expansion: cost of applying the intervention in a different setting

• Limited efficacy: potential success of an intervention

For each area, a thematic analysis was conducted to explore salient topics and

develop codes within each theme. The analysis was done in a reiterative fashion,

with two authors (LD & AMB) analyzing the data independently, with regular

discussions on interpretations and provisional findings. Codes were continuously

refined and the data re-analyzed until consensus was reached. The following

161

reference codes are used for direct quotations: Prv = provider; Pat = Patients; FG =

focus group; II = individual interview; IG = intervention group; CO = comments-only

group; M = male; F = female.

Results

Not all the areas and outcomes described in Bowen et al. (2009) framework for the

design of a feasibility study were applicable to the current study, as participants

were not in a position to give a perspective on some of the health systems and

policy issues such as cost analysis and efficacy testing. Some areas of the

framework were also adapted to accommodate additional findings from our data.

Areas that stood out most were acceptability, demand, practicality, and adaptation.

Implementation, integration, expansion and limited efficacy were less prominent.

Acceptability

Both patients and providers expressed satisfaction with the content and approach

of the booklet. As effective management of chronic diseases requires the

strengthening of both pharmacological and non-pharmacological interventions, one

provider commented specifically on the holistic approach: ‘… most of the time

when we treat the chronic illnesses, we emphasize on pharmacology, but this one

is non-pharmacological.’ (Prv_FG1_IG_M)

Patients reported that the booklet improved their knowledge of their condition – ‘I

knew some of the things, but most of this I didn’t know’ (Pat_FG1_IG_F); – ‘This

booklet … opens our knowledge, because we are sick and we don’t know how to

cure ourselves’ (Pat_FG1_IG_M).

Patients also perceived the booklet as being an appropriate guide or manual for

the day-to-day self-management of chronic conditions, for which one participant

made the following comparison:

162

Like when I want to go to the driving school, they tell me this is a stop sign, a

hill sign. But when I don’t follow those rules, I am going to make an accident.

But when I follow the rules, then I will be always driving well. (Pat_FG1_IG_M)

Providers perceived the booklet as appropriate in encouraging patients to self-

manage their care and ‘… enforcing patients to get what they are actually

supposed to get’ (Prv_II2_CO_M). Providers ‘… don’t always have time to discuss

everything with them [patients]; so things that we may have left out will be in here

[in the booklet]’ (Prv_II_3_CO_F).

Providers’ perspective that ‘a book like this might make it easy for junior doctors’

(Prv_II2_CO_F) when doing routine check-ups for chronic patients fits in with the

demands of the organizational culture. The booklet was also seen as ‘a perfect and

a nice monitoring tool’ (Prv_II1_IG_F). From a patient perspective, members of the

intervention group mentioned that writing down questions for the next consultation

was an effective reminder mechanism – ‘The booklet gives us access to the

doctors, so you can ask questions concerning this book and you get a good

relationship with the doctor’ (Pat_FG1_IG_F). Others also found the more holistic

and patient-centered approach appealing – ‘Last time we would get inside, they

just write and say, ‘Go and take the pills.’ And we follow drinking those pills just like

that. This … book is better than that’ (Pat_FG1_IG_F).

Demand

Patients expressed themselves strongly on their intention to use or to continue to

use the booklet – ‘Nothing will stop me from using this book’ (Pat_FG2_IG_F), and

‘… my children will read for me and I will know what to eat, what not’

(Pat_FG2_CO_F).

Some patients viewed the booklet as a facilitator for self-managing their own care:

‘… this book … it is my life, that’s why I am going to use it’ (Pat_FG2_IG_F).

Patients in the intervention group used the booklet for reading and preparing their

163

questions for the providers, whereas providers used the booklet for communication

and answering patient questions.

Today I did ask the doctor that I wanted to chat to him and I gave him this

booklet and he asked if I was drinking or smoking ... eating correctly … if I was

sleeping okay ... So you understand that you talk with your doctor about what

is bothering you (Pat_FG2_IG_F).

Patients in the comments-only group expressed their intention to use the booklet

as a ‘passport’ (Pat_FG1_CO_F), but with reservations, for instance ‘if the doctors

would give us that chance we would use it’ (Pat_FG2_CO_F). Reasons for wanting

to use the booklet included improved knowledge and the benefit of sharing

information with family and offspring – ‘Even kids at home will see it and read it. A

book is like a history; it has things that will not disappear. It’s like a candle that

lights for them to be clever’ (Pat_FG2_CO_M).

Both patient and providers reported a perceived demand for the booklet. From the

patient’s perspective the emphasis was on the demand for information, on the

condition itself and on lifestyle changes, especially dietary guidelines.

I think this book will help many of us who did not know. If they [other family

members] read for us, since we did not learn, then we will hear what is the

disease, what we should eat and what are the mistakes (Pat_FG4_CO_M).

The demand for the booklet was perceived to go further than the patients only, as

‘everyone in this world who is alive will benefit from this booklet’ (Pat_FG2_CO_F),

and ‘since diabetes runs in the family … even if I pass away, they [other family

members] will know how to treat themselves’ (Pat_FG2_CO_F).

The study also had a ripple effect on other providers not involved in the study who

enquired about photocopying the booklet or making recommendations for using it

with community health workers.

164

Implementation

Successes and failures in using the booklet were related to the intervention group’s

patients reading and writing in the booklet – ‘I wrote whatever was my concern and

then I asked my doctor about it; so in case I forgot ... I wrote whatever complains

that’ (Pat_II1_IG_F). Participant feedback was varied, with some referring to the

following – ‘We have taken time to read it’ and ‘I did write where I understand;

where I did not understand, I did not write’ (Pat_FG2_IG_F). Apart from not

understanding, other reasons for not writing included ‘I was just lazy to write’

(Pat_FG1_IG_M), and ‘I had problems of funerals’ (Pat_FG2_IG_F). On the other

hand, the providers’ use of the booklet may have been influenced by their

assessment of the patients’ literacy levels and ability to understand English and by

the availability of family members to read for them.

Some [patients] … told us that they gave us this book … ‘I have to ask

questions … at home [to] my kids. I don’t stay with my kids.’ … We [providers]

find ourselves having this book, but patients not understanding how to use it.

(Prv_FG1_IG_M)

There was not much probing in terms of the resources that were needed to use the

booklet. However, some providers referred to the importance of including frontline

community health workers, ‘the ones that go into the families’ (Prv_FG1_IG_M), in

using the booklet. Others saw health promoters as key implementers, as ‘[t]hey will

be able to unpack the book properly for patients while they are waiting’

(Prv_FG1_IG_M). The potential of using the booklet in support groups was also

mentioned.

I think as a tool to educate the patients this book it’s out of this world. Actually

I was thinking of coming back to you to ask, ‘Do you mind if I can use this

book when I have support groups?’ It’s very good. (Prv_FG2_IG_F)

Factors mentioned that affected the ease or difficulty of implementation included

the size of the booklet.

165

Some of them [patients] … might look at it and say, ‘A book’. You know, most

people are lazy out there. These are practical ways on how people may react

to this like ‘Oh, why did they give me such a huge book with lots of tables? I

don’t have time for that.’ (Prv_II1_IG_F)

Other factors were patients’ functional literacy and proficiency in English, with

some patient participants finding ‘the English is very understandable’

(Pat_FG1_IG_F) and the glossary with the translation of key words in Zulu and

Sepedi helpful: ‘… they explain the words that they thought will be difficult for us to

understand in English’ (Pat_II1_IG_F). Cooperation of healthcare providers in the

use of the booklet was also a concern – ‘Maybe if you [researcher] haven’t talked

to them [nurses]… it will be difficult’ (Pat_FG1_CO_F).

Providers referred to ‘rural patients who never read or write’ (Prv_II3_CO_F) and

the fact that ‘most of our diabetic patients are older patients; they can’t read and

write.’ (Prv_FG2_CO_F) They also had concerns about privacy – ‘Some people,

they don’t want other relatives or family members to know what they are suffering

from.’ (Prv_II1_IG_F) One provider from the rural CHC in the comments-only

group also expected issues with difficult patients who would not want to bring their

booklets along for consultations – ‘Some patients are lazy, and … stubborn …

harsh. You will ask them, “Where is that book?” And they will start complaining’

(Prv_FG1_CO_F).

Practicality

Patients in the intervention group reported several positive and expected positive

effects of the use of the booklet. In terms of interaction with health providers, they

mentioned the reciprocal relationship in terms of asking questions – ‘I don’t think

there was a time when the doctor asked me questions like that, but now I am

happy’ (Pat_FG2_IG_F).

Some participants made decisions about lifestyle changes – ‘I got the information

from the book about my diet, so I decided to start with my diet and if I get that right

166

I will start to exercise’ (Pat_II1_IG_F). Others reported on perceived or expected

health outcomes – ‘I am better than before because I read this book’

(Pat_FG2_IG_F), and ‘My blood pressure is still high, but I believe this book is

going to help me’ (Pat_FG2_IG_F).

Providers saw the booklet as ‘an empowerment tool to get patients to take

responsibility’ (Prv_II1_CO_M), but a few doubted the ability of patients to use the

booklet effectively. As already mentioned some providers perceived some patients

as being lazy and stubborn. But some also felt that parts of the booklet would have

more value for use – ‘I think one should stress that the patient … should be able to

look on the first few pages just to get information on what is diabetes … I think

that’s really good and the health messages’ (Prv_II3_CO_F).

According to some providers, the efficiency and speed of the implementation of a

care plan booklet could be hampered by the additional consultation time needed

with the booklet and the heavy workload of staff – ‘We see a lot of patients’

(Prv_FG1_IG_M).

But now we need also to consider … patients’ waiting time, because the time

will increase. If we are used to seeing the patient for 15 minutes, this will

increase from 15 to 25 minutes because we record in the patient’s file and the

register and this [booklet]. (Prv_FG1_CO_M)

167

Adaptation

One aim of the study was to receive recommendations for the adaptation of the

content and format of the prototype booklet. Apart from translations into several

languages, the patients did not have many recommendations about the content. In

the comment-only group, patients reported that they needed more time to read and

understand the booklet – ‘Now we haven’t read it nicely to see if it has everything,

we will go and read it at home’ (Pat_FG2_CO_M). Others indicated that they had

little knowledge about the subject of the booklet, so they were happy that they got

something to teach them. There were also requests for additional information on

diet, for example, ‘I want to know about … banana … How does it affect diabetes?’

(Pat_FG2_IG_F).

Providers reported that the booklet should include a set of minimum requirements

for diabetes care to empower patients to demand the care they are supposed to

receive: ‘… a set of minimum requirements for diabetes care … you as a diabetic

patient are entitled to … at every visit, once or twice a year’ (Prv_II1_CO_M).

Others thought that there should be a simple flow chart to record vital signs for five

or ten years showing a trend so that one can easily see if target levels are met.

There were also some comments on pictures to be changed, the use of more color,

the inclusion of community resources where patients can get help, and the revision

of the body mass index table. With regard to the last recommendation one provider

commented:

I think they are doing their study mostly based on white people … you know we

are African; on weight, you know, we are big people. So if you say we are

overweight, there I don’t know. (Prv_FG1_CO_F)

Integration

For this study, integration refers to the level of system changes needed to integrate

the booklet into the day-to-day care and treatment of diabetic and hypertensive

patients. Patients’ perceptions of fit with current infrastructure related to feelings of

168

being better cared for by the system through the facilitation of communication with

healthcare providers.

We previously did not have the audacity and the right to ask questions to the

nurses and the doctors. Ours was, come and take medication and listen. And

some of them [providers] they don’t have patience. (Pat_FG3_CO_M)

Patients also felt the booklet ‘… will help even when we get home; the kids will

read for us, telling me it’s this and that.’ (Pat_FG2_CO_F)

Providers referred to how the booklet could fit in with the system – ‘So it’s a tool

that we can give to patients in the initial phases; it would get good results because

patients have something to refer to’ (Prv_FG1_IG_M). All healthcare providers

were seen to possibly benefit from the use of the booklet– ‘It’s not only doctors that

are practitioners ... most of the patients, especially in small clinics … are seen by a

nurse health practitioner’ (Prv_FG1_IG_F). However, a concern was expressed

about the ability to refer patients needing certain types of special care – ‘I do not

know if in the primary healthcare there is any psychologist. We don’t have a

podiatrist’ (Prv_II1_CO_M).

With regard to sustainability, some providers had reservations because of time

challenges – ‘I think time is the biggest issue; it needs extra time to look at the

book’ (Prv_II3_CO_F). A dietician also referred to ‘[w]e end up giving duplicate

information’ and some patients being confused because ‘they don’t gel well’

(Prv_II1_IG_F).

Expansion

As the booklet can be integrated in the current infrastructure, its use as a

communication tool between providers and patients fits in with patient-centered

care and can be said to fit with organizational goals and culture. There were some

patient requests for mass production – ‘Please make lots of them and distribute

them among clinics and provinces and go and teach people’ (Pat_FG2_CO_M).

169

The expansion of the content to include more chronic diseases treated in primary

care was also proposed – ‘I feel that the [booklet] … could actually be beneficial to

all five or six chronic conditions that we are managing’ (Prv_FG1_IG_F).

On the other hand, providers in the comments-only group, apart from seeing a

possible negative effect of the use of the booklet on their use of time, also referred

to possible positive effects on their organization of work.

For us as providers it will help us ... when we give health talk to the patients.

They will have that knowledge from this book. If we talk about diabetes and

hypertension, they already know exactly what are we talking about.

(Prv_FG1_CO_M)

Limited efficacy

Although limited efficacy could only be properly tested by using quantitative

measures, in this study participants expressed their views on the effect of the

booklet on their lives – ‘[The booklet] it’s already made a difference in my life; so I

believe it is going to have impact on even more people’ (Pat_II1_IG_F).

Providers, on their part, saw the effect of the booklet on creating an opportunity for

more holistically-orientated consultations.

I like the idea that patients need to prepare for the consultation … because we

never think of patients come to us and they didn’t think of what they want to

complain of [with regard to their chronic condition] … It’s often they complain

of things that are not related to the diabetes. So we often see patients, then

they complain of ‘flu, then that is their major problem now. But their diabetes

care problems are not addressed, because they don’t ask us about their

diabetes care. (Prv_II1_CO_M)

170

Discussion

Feasibility studies can assess whether an intervention is suitable for further testing

and provide information on whether it is relevant and sustainable (Bowen et al.

2009). This study tried to answer the question whether the self-management care

plan booklet that was adapted for patients with diabetes and/or hypertension in

South-African communities would work. The results indicate that both from the

perspective of the patients and of the healthcare providers the care plan booklet

was considered to have a good chance of success, if the potential pitfalls could be

factored in. These pitfalls can be addressed in a bigger study in which the focus

areas of expansion and efficacy testing should get more attention.

This study revealed a high acceptability of the care plan booklet by both patients

and providers in facilitating the collaboration in self-management. The acceptance

of the booklet is probably motivated by the patients’ lack of sufficient information

about their conditions (Dube et al. submitted; Parker et al. 2012) and by the current

lack of context specific health education material. Some comments relating to

organizational culture fit in well with the emphasis on ‘assisted self-management

support’ in the integrated chronic diseases model (ICDM) adopted for South Africa

(Mahomed and Asmall, 2015).

The study also highlighted the value of the individual care plan booklet in

increasing the patients’ knowledge and improving the communication between

patients and their health providers during consultations. This confirms the finding

from previous research that healthcare providers in South Africa mostly have a

treatment-and-drug dispensing approach, while neglecting the self-management

component of care (Dube et al. submitted). The current shift in the provision of care

from paternalistic to partnership models requires patients to become part of the

treatment process (Bodenheimer et al. 2002; Von Korff et al. 1997) in which their

voices are heard and their needs attended to by the healthcare providers in a more

holistic manner. Bodenheimer et al. (2002) assert that it can be an eye opening

experience to allow patients to define their problems.

171

The demand for a care plan booklet was illustrated by patients wanting to share the

booklet with family members and even neighbors. This demonstrates that the

booklet could be used as a vehicle for communication, not only with providers but

also with family and friends. A study on maternal handbooks in Cambodia also

found that women were willing to share manuals with family members and that they

saw records as a valuable source of health information (Yanagisawa et al. 2015).

Although patients in our study referred to the actual and intended use of the care

plan booklet, most of them expressed the need for health service providers to

cooperate with them. This points to the need for partnership in the treatment of

chronic diseases necessitated by the epidemiological shift in lifestyles. Having a

care plan booklet could be a good start for many developing countries, as patients

need to understand their changing role from being dependent on healthcare

providers to becoming active agents of their own treatment (Von Korff et al. 1997;

Bodenheimer et al. 2002).

The booklet was regarded as easy to implement, as the people who would be

instrumental in any role-out were already available. Community health workers

(CHWs) who conduct home visits and health promoters who engage with patients

in the waiting area were seen as key stakeholders. In many low-to-middle income

countries like South Africa, the use of CHWs has been accelerated, especially due

to a shortage of health service professionals (Mishra et al. 2015). CHWs act as a

link between the community and the health facilities. Research in Iran indicated

that trained CHWs were effective in the control of diabetes and hypertension

(Farzadfar et al. 2012). However, while the use CHWs might sound like a good

opportunity for task shifting, this suggestion should be approached with caution.

There are challenges such as overburdening the CHWs, thereby reducing the

quality of their work in communities. CHWs will need proper training and adequate

provision of equipment and support if they are to be involved NCD care (Mishra et

al. 2015).

A small number of exceptions notwithstanding, patients in the intervention group of

the present study generally managed to use the booklet. The fact that some

172

patients did not use it may reflect certain characteristics of the population whereby

socio-cultural obligations are put before one’s own health needs, in such a way that

the booklet became second to other ‘important tasks’. Betsch et al (2015) also

point out that the cultural background of an individual affects his or her attitude

towards behavior. Again, this tendency could be due to the socialization of people

to the medical model of care whereby patients expect the health service provider to

be responsible for everything and don’t give themselves a role to play

(Bodenheimer et al. 2002).

In general, the care plan booklet was perceived as something that was practical

and that could easily be integrated in the treatment plan. This is a positive sign in

the light of South Africa’s current drive to re-engineer primary healthcare and to

integrate the chronic care model that includes self-management as an equal

component of care (Mahomed and Asmall, 2015; Wagner, 1998). Although

providers voiced the issue of time and long queues in the primary healthcare

facilities as possible barriers to the integration of the booklet in the treatment, the

general opinion was that it could be sustainable. The latter is crucial in view of the

double burden of disease in the developing countries (Iwelunmor et al. 2016).

Finally, several points were mentioned related to possible adaptations of the care

plan booklet. Participants’ suggestions that the booklet should be provided in their

own language reveals a need for interventions to be contextually adapted to the

target population. On the other hand, the providers’ complaint that the body mass

index scale is not appropriate for African people demonstrates the salient influence

of context on the beliefs about health (Dube et al, submitted).

Limitations of the study

This study yielded insightful views about the feasibility of the use of an individual

care plan booklet for diabetic and hypertensive patients. However, some limitations

must be acknowledged. A major limitation was the short time for the study and the

limited availability of some of the participants. Interviews were done at the facilities

providing care for the participants and some patients were in a rush to finish their

173

interviews. This hampered our ability to get a good sense of the real potential of the

longer-term utilization of the care booklet by patients and their families or in

medical consultations. Secondly, the potential impact of existing knowledge about

the disease and of health literacy was not explored in depth. The prototype booklet

was only printed in English. While this was due to limited resources, many patients

would have preferred the tool to be available in their first language. The short

duration of the study made it difficult to collect data on health outcomes, which

highlights to the needs for more research in this regard.

Conclusion

This study provides relevant information for the development and adoption of the

self-management component of the ICDM that is currently being implemented in

South Africa. The care plan booklet can be used as a vehicle to improve the

interaction between patients and their providers and/or family and friends. Although

participants accepted the booklet and saw it as an empowerment tool, more needs

to be done to further adhere to the health providers’ recommendations and to

enhance the capabilities of patients to self-manage their disease more effectively.

Conflict of interest

The authors declare no conflict of interest.

References

Barron, P. and Roma-Reardon J. (eds) (2008) South African Health Review 2008. Health Systems Trust, Durban.

Bodenheimer, T., Lorig, K., Holman, H. and Grumbach, K. (2002) Patient self-management of chronic disease in primary care. Journal of the American Medical Assosciation, 288, 2469–75.

Bowen, D. J., Kreuter, M., Spring, B., Cofta-Woerpel, L., Linnan, L., Weiner, D., et al. (2009) How we design feasibility studies. American Journal of Preventive Medicine, 36, 452–7.

Cunningham, P. (2016) Patient perceptions of clinician self-management support for chronic conditions. American Journal of Managed Care, 22, e125–33.

Desilva, D. (2011) Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management.

174

The Health Foundation. http://www.health.org.uk/publication/evidence-helping-people-help-themselves (last accessed 2 December 2015).

Dube, L., Van Den Broucke, S., Rendall-Mkosi, K., Kalweit, K., Hosiaux, M and Dhoore, W. (2015) An audit of diabetes self-management education programs in South Africa. Journal Public Health Research, 4, 176–84.

Farzadfar, F., Murray, C. J., Gakidou, E., Bossert, T., Namdaritabar, H., Alikhani, S., et al. (2012) Effectiveness of diabetes and hypertension management by rural primary health-care workers (behvarz workers) in Iran: A nationally representative observational study. Lancet, 379, 47–54.

Iwelunmor, J., Blackstone, S., Veira, D., Nwaozuru, U., Airhihenbuwa, C., Munodawafa, D., et al. (2016) Toward the sustainability of health interventions implemented in sub-Saharan Africa: A systematic review and conceptual framework. Implementation Science, 11, 43.

Lake, A. J. and Staiger, P. K. (2010) Seeking the views of health professionals on translating chronic disease self-management models into practice. Patient Education and Counseling, 79, 62–8.

Levin-Zamir, D., Badarne, S., Najami, M., Gan Noy, S., Poraz, I., Shapira, M., et al. (2016) The use of focus groups as a basis for planning and implementing culturally appropriate health promotion among people with diabetes in the Arab community. Global Health Promotion, 23, 5–14.

Mahomed, O. H. and Asmall, S. (2015) Development and implementation of an integrated chronic disease model in south africa: Lessons in the management of change through improving the quality of clinical practice. International Journal of Integrated Care, 15, e038.

Mills, S. L., Brady, T. J., Jayanthan, J., Ziabakhsh, S. and Sargious, P. M. (2016) Toward consensus on self-management support: The international chronic condition self-management support framework. Health Promotion International, May 30, 2016: 10.1093/heapro/daw030.

Mishra, S. R., Neupane, D., Preen, D., Kallestrup, P. and Perry, H. B. (2015) Mitigation of non-communicable diseases in developing countries with community health workers. Globalization and Health, 11, 43.

Parker, W. A., Steyn, N. P., Levitt, N. S. & Lombard, C. J. (2012) Health promotion services for patients having non-comminicable diseases: Feedback from patients and health care providers in Cape Town, South Africa. BMC Public Health, 12, 503.

Vandelanotte, C., De Bourdeaudhuij, I. and Brug, J. (2004) Acceptability and feasibility of an interactive computer-tailored fat intake intervention in belgium. Health Promotion International, 19, 463–70.

Von Korff, M., Gruman, J., Schaefer, J., Curry, S. J. & Wagner, E. H. (1997) Collaborative management of chronic illness. Annals of Internal Medicine, 127, 1097–102.

Wagner, E. H. (1998) Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1, 2–4.

Yanagisawa, S., Soyano, A., Igarashi, H., Ura, M. & Nakamura, Y. (2015) Effect of a maternal and child health handbook on maternal knowledge and behaviour: A community-based controlled trial in rural cambodia. Health Policy and Planning, 30, 1184–92.



175

Supplementary file

Demographic characteristics of patient participants

177

CHAPTER 8: Pilot study

Enhancing diabetes and hypertension health literacy in

a South African township: a pilot study

To be submitted for publication as:

Dube L, Van den Broucke S, Berg, AM, D’Hoore W. Enhancing diabetes and

hypertension health literacy in a South African township: a pilot study.

178

Abstract

Several programs have been developed to assist in self-management of chronic

diseases and generally have positive outcomes. However, their effectiveness may

depend on various patient characteristics like health literacy, especially in

resource-limited settings. Health literacy is currently an under-researched subject

in resource-limited settings, despite the possibility of a higher prevalence of low

health literacy. A pilot study was conducted with the aim to explore changes in

disease-specific knowledge and health literacy among diabetic and hypertensive

patients who had received self-management education using an individual care-

plan booklet to be used in a healthcare consultation. Participants were diabetic and

hypertensive patients from a community health center, in a South African township.

Forty-four (83%) of the 53 recruited participants completed the post-questionnaire

(one month follow-up). Paired samples t-test revealed a significant difference in

knowledge about hypertension from pre- to post-test (p 0.013), but no significant

change in diabetes knowledge and functional and communicative health literacy.

As existing health promoting activities will yield limited results among people with

limited health literacy, further research on improving the health literacy of the

population in developing countries is recommended.

Key words: healthy literacy, knowledge, diabetes, hypertension, South Africa.

179

Introduction

Self-management education refers to behavioral interventions aimed at facilitating

the knowledge, skills, and abilities that are necessary for the day-to-day manage-

ment of a chronic disease. As chronic diseases require daily self-care, a patient’s

capacity to manage his or her disease is generally considered to be a key

determinant of treatment outcomes and of health-related costs. Consequently, a

range of psychoeducational and self-management education programs have been

developed for a variety of chronic diseases (1, 2).

While these programs generally have positive outcomes (3) their effectiveness may

depend on various patient characteristics. One of these characteristics is health

literacy (4). Health literacy can be defined as “people’s knowledge, motivation and

competences to access, understand, appraise and apply health information in

order to make judgements and take decisions in everyday life concerning being ill,

being at risk and staying healthy” (5) (p. 3). A low level of health literacy has been

associated with a range of outcomes related to health, including poor access to

healthcare, inadequate use of healthcare services, a lower likelihood to engage in

health-promoting behaviors, poor knowledge of diseases, decreased medication

adherence, and poor adherence to self-care management, as well as poor general

health and higher mortality (6).

The self-management activities that must be performed by persons suffering from a

chronic disease, such as taking medication, respecting dietary restrictions, staying

physically active, or monitoring blood glucose or blood pressure can be challenging

for someone who has limited health literacy (4, 7). Furthermore, people with low

health literacy often feel ashamed of their difficulty to understand information and

hide this from their doctors (8-10).

Nutbeam et al. (11) proposed a model discriminating between three types of health

literacy. Functional health literacy refers to the basic skills, including reading and

writing, which are required to access and understand information that is relevant to

one’s health. Communicative health literacy involves more advanced skills that

180

enable the extraction of information, defining meaning and applying that

information to everyday life. Critical health literacy requires a set of more advanced

skills to evaluate information from different sources and use it to take charge of

one’s life (11, 12).

Most self-management support programs for chronic patients provide information

about the condition, and enhance the patient’s competences and skills to manage

it on a day-to-day basis. A direct expected outcome of these programs is therefore

an increase of disease-specific (mainly functional) health literacy. On the other

hand, self-management education programs also make use of health information in

different formats (print, internet, oral) to help patients self-manage their condition

(2, 12). As such, a patient’s level of general health literacy is critical for under-

standing the information that is provided and for developing the skills to participate

in the management of their condition.

While the role of health literacy for self-management education of chronic diseases

is increasingly recognized, very few studies have actually investigated its impact on

the effectiveness of self-management programs. To our knowledge, only two

studies have examined whether health literacy moderated the effects of self-

management education (13, 14), demonstrating an improvement of self-care

behaviors in both high- and low- health literate patients. Moreover, very few studies

have investigated health literacy in developing countries (15), and so far no studies

have explicitly focused on disease-specific health literacy as an outcome of self-

management education.

This pilot study aimed to investigate the effectiveness of a self-management

education intervention for diabetes and hypertension on health literacy and

disease-specific knowledge. Specifically, it evaluated the effects of using a context-

specific care-plan booklet by patients and healthcare professionals during medical

consultations. To our knowledge, this is one of the first outcome studies of self-

management education in a developing country using a care-plan booklet as an

181

intervention and considering disease-specific health literacy as an outcome

indicator.

Method

Sample

The study was part of a larger study on the development and testing of a self-

management support tool for chronic patients, and took place in a community

health center (CHC) in a township of the Tshwane metropolitan area in South

Africa. A convenience sample of 53 diabetes and/or hypertensive patients with

uncontrolled values for glucose and blood pressure who received treatment and

care at this CHC were included in the study. Male and female patients 18 years

and older who were able to read and write or who had someone at home to assist

with reading were recruited. All participants gave written informed consent. The

study was approved by the Research Ethics Committee of the Faculty of Health

Sciences, University of Pretoria (protocol 57/2016) and the Tshwane District

Research Ethics Committee (Project 15/2016).

Forty-four (83%) of the 53 recruited participants completed the post-questionnaire.

Nine patients were lost to follow-up, mostly as a result of the timing of the follow-up

dates which were directly before and after major public holidays in South Africa.

Table 8.1 gives a summary of the demographic characteristics of participants. Their

age ranged from 29 to 75 years. More than half of the participants were women

(59%). One quarter of participants completed some years of primary school

education, whereas the rest had completed junior (grade 8-10) and senior (grade

11 -12) high school education.

182

Table 8.1 Demographic characteristics of participants completing the study (n=44)

Intervention

The study consisted of a pre-post comparison looking at disease-specific health

literacy and knowledge before the introduction of an individual care-plan booklet for

collaborative use by providers and diabetic and/or hypertensive patients during

medical consultations, and after one month follow-up. The care-plan booklet was

183

not the intervention by itself, but was used to complement or enhance the already

existing doctor-patient consultations. Patients consult with their health service

providers (nurses or doctors) every one to three months. The development of a

care-plan booklet was informed by the results of a previous study of patient and

provider needs, revealing that patients were mostly passive recipients of

information and did not have a place to record the advice given by health service

providers. A booklet could assist them in retaining messages and enhancing the

self-management of their chronic conditions. Providers also did not have a tool to

support patients with self-management (16).

The concept for the development of the care-plan booklet was triggered by an

existing self-management tool used by Curo Health (17), a non-governmental or-

ganization (NGO) based in Pretoria, South Africa. Their care-plan booklet was

developed based on the Stanford University Chronic Disease Self-Management

Programs (CDSMP(18). Although the booklet was already used in consultations

between patients and health service providers in the private healthcare sector, it

had not yet been evaluated. Moreover, its usefulness in the public health sector,

with patient of lower socio-economic status and lower health literacy, was of

concern. Therefore, the existing booklet had to be adapted to fit the context of the

target population. Other pamphlets on diabetes and hypertension available in PHC

clinics were also consulted for additional information to include in a contextually-

appropriate booklet for this study (19, 20).

The care-plan booklet contains information on diabetes and hypertension, their

complications, examples of lifestyle changes and target values for blood glucose

and blood pressure. The part to be used during a consultation has spaces for the

patient to pre-record observations and questions for the health provider, a space

for vital signs, different emotional faces to be used by the health service provider to

probe how the patient was feeling and discussion questions on diet, exercise,

medication, smoking and alcohol consumption.

184

For the purpose of this study, health service providers issued the care-plan booklet

to eligible patients. After one month patients brought back the booklet which was

then used in aiding communication during the medical consultation.

Questionnaires

A pre-post questionnaire was used to collect data. Health literacy was measured

via an adaptation of Ishakawa’s Health Literacy (HL) questionnaire which

measures functional, communicative and critical health literacy in diabetes patients

(12). Only the items on functional and communicative health literacy were used, as

the items on critical health literacy were considered too difficult, given the lower

educational level of the participants and their preference for verbal interaction. The

items were adapted to be relevant for hypertensive patients. The internal

consistency analysis (Cronbach’s alpha) gave high levels of internal consistency

both for functional health literacy (0.90) and for communicative health literacy

(0.84). Diabetes knowledge was measured via Eigenmann’s tool on diabetes

knowledge (21). The seven most relevant items for the South-African context were

included in the questionnaire. For hypertension knowledge questions, the five most

relevant items were selected from Schapira’s 14-item questionnaire (22).

Data collection

In order to reach as many participants as possible, patients were contacted by

mobile phone a day before their scheduled consultation to remind them of the date

and to bring the booklet with them. Participants who could not complete the post-

questionnaire at the CHC (n = 9) were contacted by telephone and the researcher

completed this questionnaire with them telephonically. The questionnaires were

handed to the participants when they came to consultation. In some instances

where the patients needed assistance, the questionnaire was interviewer-

administered. A trained research assistant fluent in the local vernaculars

administered the questionnaire to patients who preferred to respond in their own

language.

185

Although most of the items were adapted from pre-existing tools (12, 21, 22), any

questionnaire had to be kept very simple and short. Patients in the study came

from a verbal culture and English was not their first language. Participants were

mostly older patients, with whom there is a preference for verbal communication.

Data analysis

Data were analyzed with the Statistical Package for Social Sciences (SPSS version

12) (23). To establish the reliability of the health literacy scales, Cronbach’s alpha

was calculated. Descriptive statistics (means and frequencies) were generated and

paired samples t-test were used to compare the scores before and after the

intervention.

Results

Health literacy

Paired samples t-test on the health literacy scales revealed no significant change in

functional health literacy from pre- to post-test. For communicative health literacy, a

moderate difference was observed between the scores on the pre-test and post-

test, but the t-test again revealed no significant difference (Table 8.2).

Table 8.2 Results of paired samples t-test

Health literacy and knowledge levels

Pre-test Mean (SD)

Post-test Mean (SD)

t p

Functional health literacy 2.19 (0.622) 2.21 (0.652) -0.086 0.932

Communicative health literacy 1.57 (0.521) 1.72 (0.669) -1.102 0.280

Diabetes knowledge 2.79 (1.010) 3.12 (0.907) -0.899 0.388

Hypertension knowledge 2.17 (1.022) 2.70 (1.078) -2.594 0.013

Twelve participants completed the diabetes knowledge questionnaire in both pre-

and post-tests. No significant change was found in the knowledge of patients as a

186

result of the intervention. For hypertension, 41 participants answered the

questionnaire. As shown in Table 8.2, there was a significant change in knowledge

of hypertensive patients from pre- to post-test (p = 0.013).

Discussion

To our knowledge, this study is the first one to evaluate the effects on health

literacy and disease-specific knowledge of using a care-plan booklet in South

Africa. There is a paucity of information regarding health literacy in developing

countries, as the vast majority of publications on health literacy concern developed

countries (15, 24). However, developing countries are in need of research, as it can

be assumed that health literacy is generally low (15) given the link between health

literacy and overall literacy (5). Although South Africa has one of the highest

general literacy rates in Africa (24), it also suffers from a double burden of disease,

i.e. communicable diseases (e.g. malaria and tuberculosis) and non-communicable

diseases (e.g. diabetes, hypertension, asthma, and epilepsy) (25). Given the

complexity of issues that patients have to deal with in the self-management of their

conditions, low health literacy creates a huge challenge for the management of

chronic conditions.

As this was a small pilot study, its results have to be interpreted with caution.

Specifically, the low power of the study due to the small sample size should be

acknowledged, particularly for the participants with diabetes (n=12). Furthermore,

the time between the pre- and posttest was limited. So, while the only significant

change observed was the improvement in hypertension-specific knowledge, it is

unlikely to expect major changes in health literacy after a short-term intervention of

one month with a small sample. It is possible that the results would have been

different over a longer period of time and with a larger sample.

Another limitation concerns the fact that the care-plan booklet was only available in

English. Ideally, it should be made available in the patients’ own language (26), but

for this feasibility study it was not possible to translate the booklet into the

languages spoken by participants. Similarly, the evaluation questionnaire was

187

administered in English, although the option of translation in participants’ own

language was provided. This may explain some of the missing responses where

patients either chose not to respond to a particular item or not having understood

the item.

Furthermore, this pilot study did not include a process evaluation, which would

have been useful to explore how the booklet was used and to explain some of the

results. Further research on the usability of the care-plan booklet in view of its

wider dissemination should pay specific attention to translation and language

issues, as South Africa has 11 official languages and in most communities multiple

languages are used for communication.

Lastly, to decide on the use of the care-plan booklet, its impact on health literacy

and self-management behavior should be investigated in a more comprehensive

and controlled way. An effect study should not only use a more stringent design

and include health-related and behavioral outcome measures, but also involve a

longer time frame of at least three to six months to ensure sufficient opportunities

for consultations during which the booklet can be used. Furthermore, an effect

study should be complemented with a process evaluation component to better

understand why and how the care-plan booklet has been used and explain the

results.

Conclusion

As Africa continues to face a critical but neglected burden of chronic diseases,

health literacy is an important aspect that warrants attention. Currently, the South

African government is making major strides in providing information on health

related lifestyle factors, both for the general public and for chronic patients. A

sufficient level of health literacy is a critical condition for chronic disease patients to

be able to interpret and understand such health information (27, 28). Health

promotion and self-management education will achieve little in the absence of

sufficient health literacy. Further research on self-management education initiatives

188

and tools that are accessible and effective for patients with limited levels of health

literacy are therefore recommended.

Conflict of interest

The researchers declare no conflict of interest.

189

References

1. Van den Broucke S, Van der Zanden G, Chang P, Doyle G, Levin D, Pelikan J, et al. Enhancing the effectiveness of diabetes self-management education: the diabetes literacy project. Horm Metab Res. 2014;46(13):933-8.

2. deSilva D. Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management: London: The Health Foundation; 2011 [cited 14 March 2015]. Available from: http://www.health.org.uk/publication/evidence-helping-people-help-themselves.

3. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1-7.

4. Boren SA. A review of health literacy and diabetes: opportunities for technology. J Diabetes Sci Technol. 2009;3(1):202-9.


6. Van den Broucke S. Health literacy: a critical concept for public health. Arch Public Health. 2014;72(1):10.

7. Negarandeh R, Mahmoodi H, Noktehdan H, Heshmat R, Shakibazadeh E. Teach back and pictorial image educational strategies on knowledge about diabetes and medication/dietary adherence among low health literate patients with type 2 diabetes. Prim Care Diabetes. 2013;7(2):111-8.

8. Heijmans M, Waverijn G, Rademakers J, van der Vaart R, Rijken M. Functional, communicative and critical health literacy of chronic disease patients and their importance for self-management. Patient Educ Couns. 2015;98(1):41-8.

9. Moodley L, Rambiritch, V. An assessment of the level of knowledge about diabetes mellitus among diabetic patients in a primary healthcare setting. SA Fam Pract. 2007;49(10):16.

10. Habib SS, Aslam M. Risk factors, knowledge and health status in diabetic patients. Saudi Med J. 2003;24(11):1219-24.

11. Nutbeam D. Evaluating health promotion: progress, problems and solutions. Health Promot Int. 1998;13(1):27-44.

12. Ishikawa H, Takeuchi T, Yano E. Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care. 2008;31(5):874-9.

13. Kim S, Love F, Quistberg DA, Shea JA. Association of health literacy with self-management behavior in patients with diabetes. Diabetes Care. 2004;27(12):2980-2.

14. Peer S, Ganahl K, Roethlin F, Baumann L, Pelikan J, Chang P, et al. Relative effectiveness of diabetes self-management education programs using different modes of delivery. Submitted.

15. Dowse R. The limitations of current health literacy measures for use in developing countries. J Commun Healthc. 2016;9(1):4-6.

190


17. Curo Health. Individual care plan booklet. 2015. 18. Stanford Patient Education Research Center. Chronic disease self-

management program. [Internet]. 2016 [cited 04 January 2016]. Available from: http://patienteducation.stanford.edu/programs/cdsmp.html.

19. Department of Health, South Africa. Nutritional management of hypertension [Pamphlet].

20. Department of Health, South Africa. Nutritional management of diabetes [Pamphlet].

21. Eigenmann C, Colagiuri R, Skinner T. Development and validation of a diabetes knowledge questionnaire. Pract Diab Int. 2011;28(4):166-70.

22. Schapira MM, Fletcher KE, Hayes A, Eastwood D, Patterson L, Ertl K, et al. The development and validation of the hypertension evaluation of lifestyle and management knowledge scale. J Clin Hypertens (Greenwich). 2012;14(7):461-6.

23. IBM Corp. IBM SPSS Statistics for Windows, Version 22.0. Released 2013. New York: IBM Corp; 2013.



26. Dube L, Bergh A-M, Van de Broucke S, D'Hoore W. Feasibility of a self-management tool for diabetes and hypertension in South Africa. Submitted.


28. Mokwena K. Strategies to increase the health literacy needed to complement health-promoting legislation in South Africa. S Afr J Clin Nutr. 2015;28(4):197.

191

CHAPTER 9 –Main findings and discussion

192

Introduction

Self-management is regarded as a key component of care for people with chronic

diseases, especially in resource-limited settings in countries like South Africa. How-

ever, to date, most self-management programs reported in the literature have been

developed, implemented and evaluated in high-income countries. Because low-

and middle-income countries have a different context, the effectiveness of these

programs in resource-limited settings is uncertain (1-4). To address this problem,

the research presented in this PhD thesis focuses on self-management education

for chronic disease patients in a developing country: South Africa. Specifically, it

intended to analyze the status of chronic disease self-management education in

South Africa, and to investigate how the existing offer of programs can be better

adapted to the specific context of the country and its health system. For the latter, a

self-management tool in the form of a care-plan booklet that is context specific and

that can be used as part of a medical consultation in a middle-income country was

developed and tested for its feasibility and preliminary effects.

This chapter is divided into three sections. First, we give a summary of the main

findings of the studies composing this thesis. Secondly, we will discuss the main

findings and their implications for research and practice. Finally, we will come to an

overall conclusion of the findings.

Summary of main findings

The aim of this PhD study was to provide evidence-based information regarding

the current status of self-management education programs for chronic disease

patients in South Africa, and to investigate how the existing offer of programs can

be better adapted to the specific context of the country and its health system.

To investigate these issues, we first answered the question regarding the current

status of type 2 diabetes self-management education programs in high- and

low-mortality developing countries. To that effect, we performed a systematic

193

review of the available literature regarding diabetes self-management education

(DSME) programs in developing countries, using the World Health Organization

(WHO) and World Bank criteria to differentiate between high- and low-mortality

developing countries (5, 6). The review, which is reported in Chapter 3, showed

that there is only a limited number of published studies from developing countries

that describe or test DSME programs (n=23 original studies in 25 publications).

Most studies (n=18) are from low-mortality developing countries. In terms of

program characteristics, we found that most programs (n=14) were delivered in

groups. Thirteen publications reported on the cultural adaptation of the

interventions, of which nine involved a needs assessment of the target population

prior to designing the intervention. Only nine of the evaluated programs were

accessible for people with lower levels of literacy, whereas five programs excluded

low literate patients and the remainder of studies did not present information on this

matter.

In terms of effectiveness, significant changes were found in most studies on a

variety of outcome measures, including behavior change, body mass index, HbA1c

and fasting blood glucose. Where HbA1c was used as an outcome, the effects of

the programs were found to be significant at short term follow-up. In contrast,

studies that also looked at long-term effectiveness did not find any significant

changes except for one study which reported effects even after a six year follow-

up, but this improvement could have been attributable to other factors. In six

studies, no significant change was found between the control and intervention

groups with regard to knowledge, behavior change, body mass index and

psychological state.

A second question addressed in this thesis is what type of policies and

programs for diabetes education currently exist in South Africa, as an

example of a high mortality developing country. To answer this question, we

performed an audit of the DSME policies and guidelines that are currently used in

South Africa for self-management education of type 2 diabetes patients. The study,

which is reported in Chapter 4, used document analysis in combination with a key

194

informant interview approach to look at the characteristics of existing DSME

programs in both the public and the private healthcare services. The International

Standards for Diabetes Education (ISDE) developed by the International Diabetes

Federation (IDF) (7) was used for document analysis. The ISDE serves as a

benchmark for diabetes education in all IDF countries, which include South Africa.

No formal policy documents were identified, but three guideline documents could

be found, two from the National Department of Health of South Africa and the other

from the Society of Endocrinology, Metabolism and Diabetes of South Africa (8-10).

Compared to the ISDE, a lot of information was missing in the guideline

documents. To get a better understanding of the background of DSME, two more

documents from the National Department of Health (11, 12) were analyzed. It came

to light that the country had just adopted the Integrated Chronic Disease Model

(ICDM) that calls for the integration of the management of chronic diseases instead

of running a silo system. Integrated into the ICDM, the Primary Care 101 document

aids the health service provider with information to be given to the patient.

With regard to existing DSME programs, 27 key informants (educators, and

program officers) from seven provinces gave information about DSME programs

used in South Africa using a semi-structured questionnaire. Of the 27 programs

identified, five reported on structured programs and 22 can be considered as ad-

hoc education interventions. In the public healthcare services, DSME was mixed

with educational interventions for other chronic diseases. The most common

providers of DSME in both public and private healthcare settings were healthcare

professionals (physicians and dietitians). Only in a few cases the education was

given by health promoters. The content of programs included the self-care behavior

topics recommended by the American Association of Diabetes Education (AADE)

(13). In ad-hoc interventions, education was typically given in waiting rooms and

sometimes involved handing out educational pamphlets, most of which had been

developed by pharmaceutical companies. Through the use of the local language,

pictures and visual aids and practical demonstrations education was considered to

be accessible to people with low levels of literacy. A few surface structural aspects

of culture were addressed (notably local language), but deep structural aspects of

195

culture were rarely considered. Some of the structured programs had been

evaluated, but none of the ad-hoc interventions. In sum, an important finding of this

study was that the existing DSME interventions in South Africa were often

unstructured, not very sensitive to the local context and to deep structural aspects

of culture, and in most cases not evaluated, whereas they do consider literacy to

some extent.

The third question addressed in this thesis concerns the self-management needs

of chronic disease patients in South Africa. The study detailed in Chapter 5

explored the needs and experiences of patients, healthcare providers and experts

in the field of chronic diseases with regard to self-management. The five themes

and their categories that emerged from this study are summarized in Table 9.1.

Table 9.1 Main themes and categories

Themes Categories


• Medication stock-outs • Waiting times at facilities • Educational materials and equipment • Mind set of providers • Structure of self-management


• Communication and relations with providers • Check-ups and follow-up • Confidentiality breaches


• Inconsistency in taking treatment • Poverty and financial challenges • Different food choices of family • Self-monitoring equipment at home • Side-effects of medication • Information provision


• Health education set-up in clinics • Feelings of hopelessness and acceptance of disease • Coping mechanisms • Substituting medication with herbs


• Booklet • Content

196

The first theme is health-system and service-provision challenges, where both

patients and key informants reported on several barriers that hinder patients from

achieving maximum self-management. The second theme concerns healthcare

provider attitudes and behavior. For the third theme, both participant groups

mentioned challenges related to adherence and lifestyle changes. Poverty, cultural

expectations, dietary issues with families and the effect on side effects were

mentioned as factors that contributed to medication adherence difficulties. In some

cases, lack of information about the disease contributed to the inability to change

lifestyle. The fourth theme involved the patients’ personal and clinic experiences.

Patients did not have anywhere to record the health education and consultation

advice on self-management of their diseases that they had received. Some

patients expressed a feeling of hopelessness in managing their disease while

some mixed tablets with herbs. The last theme related to self-management

strategies and patients’ preferred for a booklet which they could use with their

families and friends and even their healthcare providers. The healthcare providers

supported the idea, mentioning that even those who could not read or write would

be assisted by their relatives or their providers during medical consultations to

understand the booklet. So, in order to answer some of the existing challenges,

patients preferred a booklet to support their self-management, and health service

providers were willing to be involved in self-management activities. This provided a

window of opportunity for the development of contextually adapted self-manage-

ment programs for community health nursing.

The next question addressed in this thesis concerns the feasibility of implement-

ing a contextually adapted self-management education and support tool.

Triggered by an existing care-plan booklet already used in the private health care

in South Africa (14), a contextually adapted care-plan booklet for diabetes and

hypertension was developed for use in medical consultations in the public health

care system. The development of this tool as well as its theoretical basis and main

characteristics are described in Chapter 6. The qualitative study reported in

Chapter 7 explored the feasibility of implementing this booklet with chronic patients

in South-Africa, using focus groups and individual interviews with patients and

197

healthcare providers. The eight areas of feasibility testing described by Bowen et

al. (15) were used as areas of focus for the data analysis. Although not all the eight

areas could be confirmed, the results of this study indicated that there was a high

acceptability of the proposed intervention (booklet used in medical consultations)

from both participant groups. A higher demand of the care-plan booklet could be

inferred from the patients’ and provider’s intention to continue to use or use of the

booklet, with some patient mentioning that they wanted to use the booklet as a

“passport”. Concerning the actual implementation of the care-plan booklet by both

participant groups, it was noted that some patients had managed to use the

booklet with their providers, while others had failed for different reasons, including

“attending funerals”. Providers indicated that the high number of patients they see

per day could affect the efficiency and speed of implementation. It was noted that

the implementation of the proposed intervention with patients was practical,

indicating the positive and expected positive effects of using the care-plan booklet.

Other providers, however, expressed concern about some patients being lazy in

terms of using the booklet effectively.

Both patient and provider groups gave useful information on further adapting the

care-plan booklet to meet their needs. Patients needed more information,

especially with regard to diet, while providers suggested adding more information

that could further empower patients, for example, a set of minimum requirements

for diabetes care that would allow patients to know what services they were

supposed to receive legally per annum. If patients did not receive these services,

they had a right to remind their health service providers. It was also found that the

use of the care-plan booklet could easily be integrated within the current

infrastructure, thanks to the ICDM that encourages self-management as a core

component of care (11, 16). In terms of expansion, some patients suggested a

wider distribution of the care-plan booklet and providers indicated that the same

kind of care-plan could be beneficial to patients with other chronic conditions seen

at primary care. While the efficacy of the care plan booklet should be tested by

means of a more rigorous design, the participants in our study perceived the use of

the care-plan booklet to be effective and believed that it could also have an effect

198

on other patients with the same chronic conditions. We can conclude that the care-

plan booklet was acceptable and could be used as a vehicle to improve the inter-

action between patients and their providers and/or their families and friends.

The last question addressed in the thesis concerns the effect of using the self-

management tool for diabetes and hypertension patients. A pilot-test of the

effectiveness of the care-plan booklet in terms of altering the participants’ disease

specific knowledge and health literacy was presented in Chapter 8. It concerns a

quasi-experimental study using adapted versions of questionnaires measuring

knowledge with regard to diabetes and hypertension as well as disease-specific

health literacy (17, 18) to assess the effect of using the tool at one month follow-up.

A total of 53 participants completed the pre-test questionnaire, 44 (83%) of whom

completed the post-test. A comparison between the scores before and after

starting to use the booklet indicated a significant increase of the knowledge about

hypertension from pre-test to post-test, but no significant changes of knowledge

about diabetes or of disease-specific health literacy. The limited effect, however,

can probably be explained by the small number of participants, especially of

diabetic patients, and the short time span, which does not lend itself to observe

changes in health literacy. We can thus conclude that using the care-plan booklet

is effective in increasing hypertension disease specific knowledge, but that in order

to enhance diabetes knowledge or hypertension or diabetes-specific health literacy

the use of the booklet over a longer period of time is necessary, and that a larger

sample of patients should be studied to evaluate the effects. .

Discussion of the main findings

Shortcomings of diabetes self-management education programs in high- and

low-mortality developing countries

The first part of this thesis aimed to explore the existing self-management

programs in high- and low-mortality developing countries, and more particularly in

one specific resource-limited middle-income country (South Africa). The results of

199

these studies indicated some gaps that, if addressed appropriately, could enhance

the implementation and effectiveness of DSME programs in developing countries.

As the research literature does not provide much information about self-

management programs from high-mortality developing countries, especially from

sub-Saharan Africa (except for South Africa), there is an urgent need for the

design, implementation and evaluation of such programs in order to achieve

evidence-based practice informed by local research. Our results are similar to other

studies that highlighted the fact that most available research is conducted in

developed countries, while developing countries carry the larger share of the NCD

burden (4, 19). Although the current research capacity, infrastructure and outputs

from low- and high-mortality developing countries are insufficient and scarce (20,

21), there remains a need for locally-based country research capacity building in

low- and middle-income countries (22, 23).

The systematic review also revealed a lack of programs that were tailored to the

context and needs of the populations thy work with. According to the literature,

tailoring of interventions to the context of the intended population increases the

ownership of interventions by the local people, thereby increasing the chances that

the interventions lead to sustainable change (24). The context is defined by

Marchal et al. (25) as “actors or other factors that are external to the intervention,

present or occurring even if the intervention does not lead to an outcome, and

which may have an influence on the outcome” (p. 207). These contextual factors

include institutional facilitating factors (e.g. the availability of resources) and

society’s influencing factors (e.g. socio-cultural aspects) (26).

The question of sustainability is crucial for developing countries, especially in SSA,

where there are huge health gains that have been achieved in the last 20 years,

including the decline of under-five mortality (24). However, these gains have now

been overtaken by the global disease burden that the region is carrying. Given the

fact that most funding to implement programs and intervention in developing

countries is donor-funded; the crucial question is what happens when donor-

200

funding dries-up (24). To address that issue, interventions have to be contextually

adapted. Yet while tailoring interventions to the culture of the target population is

critical for their success, other studies have reported that cultural-competent

programs create inequalities in healthcare (27). This aspect warrants attention, and

further research is needed, especially in resource-limited settings where many

other factors also play a role. One of these factors is the level of health literacy

among the population. Although empirical evidence about the level of health

literacy in SSA is lacking, it is likely that a large share of the population has limited

or insufficient levels of health literacy. This implies that low health literacy must be

taken into account, also in chronic disease self-management education. To that

effect, many techniques can be used, such as the uses of pictures and teach-back

techniques, which have previously been proved successful (28-30).

Another issue raised in the studies is that in most programs professional healthcare

staff members were the providers or facilitators of health education programs.

Although using professional staff is often considered as an indicator of

improvement in healthcare, low- and middle-income countries cannot afford such

kind of investment because of the lack of human resources for healthcare. De-

Graft-Aikins pointed out that despite the global disease burden being huge in SSA

(24%), this region has the smallest number (3%) of the global health workforce to

deal with this burden (19). It is therefore vital that professional staff be wisely used

in resource-limited settings. In this case, trained non-professionals can be included

to provide chronic disease health education, with professional staff assuming a

supervisory and training role.

In South Africa, community health workers (CHWs) have been recruited and

trained to assist in healthcare provision to address the shortage of human

resources for health (31). It is, therefore, advisable that non-professional health

workers like CHWs and health promoters deliver programs, while nurses occupy

supervisory roles (32-34). However, while the use CHWs might seem a good

opportunity for task shifting, it should be approached with caution as it poses

several challenges. One challenge is overburdening the CHWs, thereby reducing

201

the quality of their work in communities. Another challenge is the need for CHWs to

get appropriate training and adequate provision of equipment and support if they

are to be involved in NCD care (31). Since NCDs are not only a health issue but a

human development issue, and as they continue to affect millions of people in

developing countries, it is imperative that these points be addressed.

Our second study revealed that self-management education for diabetes is rarely

addressed in national policies and guidelines of South Africa and that few

structured programs exist, while the majority are mainly ad-hoc interventions. Ad-

hoc interventions were defined in the study as those interventions which include

educational talks in the waiting area or spontaneous sharing of information during

individual medical consultations without a planned structure and defined time

frame. The findings of this study are supported by others which note that

governments in developing countries are not up to date with formulating policies,

legislation and infrastructure to deal with NCDs (19, 35). Unlike other low- and

middle-income countries, South Africa has made great progress in addressing

NCDs in national policies and guidelines, but these efforts are still not adequate in

terms of self-management (11, 36). Self-management education should be

regarded as a core component of care and should be treated as such in practice.

This includes the development of guidelines for self-management education

programs that are based on evidence, for example the International Standards for

Diabetes Education that were developed by the International Diabetes Federation

(IDF) (7).

Self-management needs of patients with chronic diseases in a South African

township

Non-communicable diseases are sometimes referred to as chronic diseases.

According to Lawn et al., this definition reflects the fact that they are conditions of a

lifetime that require long-term interventions and adjustments in life (37). In addition,

as noted earlier in the introduction of the thesis, the classification of NCDs is linked

to the fact that they share common preventable and modifiable risk factors, namely

202

tobacco use, physical inactivity, unhealthy diets and harmful use of alcohol (38-41).

As such, self-management is regarded as a critical factor in the management of

conditions like diabetes and hypertension, conditions that require extensive self-

care (42-44). It is, therefore, important to invest in the education of patients in order

to improve their self-management capacities.

As noted before, developing sustainable self-management interventions builds on

the capacity of the stakeholders and conducting a needs assessment is a way of

involving primary and secondary stakeholders (45). The third study reported in this

thesis (Chapter 5) showed that there is an opportunity for the development and use

of self-management programs by PHC nurses. As PHC facilities are the first point

of contact with the community, they are important in the prevention of NCDs.

However, to achieve optimal self-management by patients, several barriers need to

be addressed. The study on patient needs for self-management support also

revealed the complex processes in self-management, which include the dynamics

and interactions within and between social and health systems (Figure 9.1).

Figure 9.1 Complexity of self-management process

203

The lack of health promotion materials and drug stock-outs in facilities could be

explained by the lack of financial resources in developing countries, but could also

be due to the lower priority assigned to NCDs. Despite the heavy costs that may be

felt in addressing NCDs, it is worthwhile to invest in the interventions to prevent

and treat NCDs, as in the long run the economic gains will be higher (46). The

gains of investing in prevention could lead to a healthy working population and an

increase in the life expectancy of the population.

The results of our study reported in Chapter 5 also revealed that patients preferred

a booklet to assist them with self-management of chronic diseases, while providers

preferred a booklet to be part of a more comprehensive package to be used during

medical consultations. Although different approaches to self-management exist,

including cell phone, web and group interventions (44, 47), a booklet was chosen

for our study because the patients perceived it as useful for sharing at home with

family members and for keeping it for later use. E-health technologies could also

serve the same purpose, but their application in a low-resource context is

expensive and not practical.

Written or printed health education materials have been long criticized for having

less impact on health outcomes. However, the available evidence suggest that

written information that is well designed can be useful in aiding professional

consultation and improving health knowledge and recall (48). A review by Houts et

al. revealed that the use of pictures assisted in drawing attention to the health

education materials, and that they had an effect on the health intentions and

behavior (49). Furthermore, spoken information aided by pictures was recalled

better by people with low literacy levels. Thus, the critical role of health service

providers in the use of the care-plan booklet developed as part of our study cannot

be underestimated (48). The roles for health service providers include supporting

patients in self-management and placing the patient at the center of care.

Patient-centered care is considered as re-organization of services around patients’

needs and can also be viewed as patient-perceived needs, priorities and expecta-

204

tions of healthcare (50) (51). Kolosa noted that, in patient-centered care, time spent

with the patient is crucial in order to achieve meaningful outcomes. However, in

reality, patient-centeredness is often forgotten or not possible in many settings (52,

53). South Africa has made considerable effort to encourage patient-centered care

in the health system. This has been achieved through legislature, for example the

White Paper on the Transformation of the Public Service (Batho Pele) introduced in

1997 (50, 54). The eight Batho Pele principles include: (1) Consultation, where

patients should be asked about the level of service they get and they should be

given a choice; (2) Information concerns patients being given full access to

information regarding the services they are entitled to get; (3) Access- means that

all patients should have full access to services; (4) Openness and transparency

involves patients having access to reports and information; (5) Redress is the

consideration of the people’s concerns and complaints regarding care or service

that is promised but is not available to them; (6) Value for money is concerned with

efficiency to provide a value for money to the patients; (7) Courtesy concerns the

realization that patients are worthy of being treated with dignity, consideration and

respect; and lastly (8) Service standards involves people being informed on what

services quality they should expect.

However, despite the availability of the Batho Pele principles, gaps in patient-

centered care still exist in South Africa. In 2013, Loveday et al. conducted a case

study following tuberculosis patients to see if they received patient-centered care

(55). The results concluded that the patients had received sub-optimal treatment

and solutions were needed both at national and provincial levels. The obstacles

from the health system included pharmaceutical services, laboratory performance

and provider performance. A study by Madigare also concluded that patients’ and

nurses’ lack of knowledge was the major barrier to patient-centered care.

Furthermore, patients and their families were reluctant to be involved in their self-

care, while the lack of information made it difficult to make good healthy choices

(50).

205

Feasibility of using a care-plan booklet for diabetes and hypertension self-

management support

In Chapters 7 and 8 of this thesis, we demonstrated that it is feasible to implement

a care-plan booklet in resource-limited settings and that this tool can be effective in

increasing hypertension-specific knowledge. Testing the feasibility of interventions

is a critical step in the development of health promotion interventions. As noted in

Chapter 7, having some sense of the potential feasibility of an intervention can

increase the possibility of it being accepted or remembered by the target population

(56). Our study showed a high acceptability of the care-plan booklet by the

participants, which can be considered as a positive starting point.

Since health promotion and patient education interventions, amongst other things,

aim to influence health related behavior, an investigation into the feasibility of an

intervention is crucial (57, 58). Psychological theories of behavior change such as

the theory of planned behavior (TPB) state that a person’s perception of a behavior

as being feasible promotes the carrying out of the behavior. More specifically, the

TPB asserts that behavior is determined by a person’s behavioral intention, which

in turn is influenced by the person’s attitude towards behavior, the subjective norm

regarding the behavior, and the perceived behavioral control. The latter relates to

the fact that in many situations people’s intentions and behavior can be influenced

by external factors, and that the perception of being able to change these

behaviors significantly contributes to behavioral change. So, if a person has a

positive attitude and a positive subjective norm towards the behavior but feels less

in control of the situation, the behavior will not be carried out (58, 59). On the

analogy, the perception of a tool being usable will contribute to it being effectively

used. In our study patients reported that the booklet was welcomed by the

significant others, but expressed a desire that healthcare providers would also

agree to use it with them.

While the feasibility study indicated that the use of the care-plan booklet was

considered as feasible, the pilot study indicated that its use can also be effective, in

206

terms of increasing disease-specific knowledge – more specifically with regard to

hypertension. Although disease-specific health literacy did not significantly increase

due to the use of the booklet, there was a trend towards positive change which

could be more significant if more time would be given to using the booklet over a

longer period of time involving more consultations. In that way, the results of the

two studies reported in Chapters 7 and 8 can inform a larger effectiveness study

planned for the future (Chapter 10). As there are not many studies from high-

mortality developing countries that are experimental, a future study would ideally

be a cluster randomized controlled trial on a larger sample that can produce strong

evidence.

As indicated in Chapter 2, South Africa’s healthcare is characterized by public and

private healthcare sectors, with the private sector having the quality of care

equivalent to that of developed countries like Belgium, the United Kingdom and the

Netherlands (60). The fact that the care-plan booklet was triggered by a concept

tool already used in the private sector and adapted for integration into the public

sector is interesting, as it illustrates the potential for low-resource settings to benefit

from well-structured practices being implemented in the private healthcare sector.

As the care-plan booklet facilitates and enhances the communication between

patients and providers, whereby even patients with low health literacy are able to

benefit from it, it can make an essential contribution to the public health care

sector, even more so as it is a low-cost intervention which the government can

modify and implement on a larger scale.

Strengths and limitations of studies

Each published or submitted article included in this thesis reported on the strengths

and limitations of the individual studies. However, the whole thesis project also had

some strengths and limitations.

The strengths of this thesis include the fact that, to our knowledge, this is the first

time the issue of self-management education and a specific tool to support self-

207

management for chronic patients was explored in a middle-income country. As

such, this thesis contributes to the literature and creates a basis for further

research in the field of chronic disease self-management in low- and middle-

income countries. Although some parts of this thesis report on quantitative studies,

most of the work reported here emanated from studies using qualitative methodolo-

gies. A qualitative research approach allowed us to explore issues, describe

people’s personal experiences and gain an understanding thereof. By analyzing

the data involving two or three researchers, we managed to ascertain the rigor of

the research in order to minimize subjectivity.

Although this work was the first of its kind, it also had its limitations. On the one

hand, findings from qualitative studies have limited generalizability, as they can

only be applied to a specific context or a specific kind of population. On the other

hand, the constraints in terms of time and resources also limited the scope and

power of the quantitative study we performed on the effects of the care-plan

booklet (Chapter 8). However, to compensate for these limitations, a cluster

randomized controlled trial is planned for the future to evaluate the effectiveness of

the care-plan booklet more rigorously, on a larger sample and over a longer period

of time. In that way, the studies presented in the thesis paved the way for a more

rigorous study, the detailed protocol for which forms the last Chapter of this thesis

(Chapter 10). Awaiting the results of that study, the present thesis, by focusing on

chronic self-management education in south Africa, already provides policy makers

and decision makers in South Africa with information that can help decide on where

and how to intervene with regard to chronic disease self-management education.

Conclusion

Self-management is regarded as a cornerstone in the management of chronic

diseases, and evidence-informed programs are important in health promotion and

patient education. This thesis contributes to the scarce literature on self-

management in South Africa and other developing countries. Although further

research is required on the subject of health literacy, this work adds to the small

208

amount of information on self-management education and health literacy that is

available for South Africa. Despite its limitations, this work has opened new

avenues for future studies. If adequate funding can be provided, the study protocol

presented in the last chapter of this thesis can be one of those studies.

NCDs will continue to rise in low- and middle-income countries and strategies are

needed to put in place to deal with them. The curative health systems that have

been put in place to address acute conditions are not useful to address the

challenge of NCDs. In addition, healthcare providers need to change their mindset

from a sole focus on dealing with acute conditions to the inclusion of the

management of chronic conditions, in which patients are required to be active

participants and not just passive recipients of care. The care-plan booklet

developed and tested in this thesis will assist in this interaction between patients

and providers.

References

1. Brady TJ, Murphy L, O'Colmain BJ, Beauchesne D, Daniels B, Greenberg M, et al. A meta-analysis of health status, health behaviors, and healthcare utilization outcomes of the Chronic Disease Self-Management Program. Prev Chronic Dis 2013;10(E07).

2. Franek J. Self-management support interventions for persons with chronic disease: an evidence-based analysis. Ont Health Technol Assess Ser. 2013;13(9):1-60.

3. Stoilkova A, Janssen DJ, Wouters EF. Educational programmes in COPD management interventions: a systematic review. Respir Med. 2013;107(11):1637-50.

4. Mendis S. Research is essential for attainment of NCD targets and Sustainable Development Goals. Glob Heart. 2016;11(1):139-40.

5. World Health Organization. List of Member States by WHO region and mortality stratum. 2013 In: World Health Organization. Neurological disorders: public health challenges. Geneva: World Health Organization; 2006. p183-4. [cited 9 December 2013]. Available from: http://www.who.int/mental_health/neurology/annexes_neuro_disorders_public_h_challenges.pdf.

6. The World Bank. How does the World Bank classify countries? [cited 15 October 2013]. Available from:

209

https://datahelpdesk.worldbank.org/knowledgebase/articles/378834-how-does-the-world-bank-classify-countries.

7. International Diabetes Federation. International Standards for Diabetes Education. 3rd ed. Brussels, Belgium: International Diabetes Federation; 2009 [cited 1 July 2014]. Available from: http://www.idf.org/webdata/docs/INTNL-STANDARDS-EN.pdf.

8. National Department of Health, South Africa. Updated management of type 2 diabetes in adults at primary care level. 2014.Unpublished.

9. Amod A, Ascott-Evans BH, Berg GI BD, Brown SL, Carrihill MM, Dave JA, et al. The 2012 SEMDSA Guideline for the Management of Type 2 Diabetes (Revised). JEMDSA. 2012;17(2):S1-S95.

10. National Department of Health, South Africa. National Guidelines. Management of diabetes type 1 and 2 in adults at hospital level. 2005. Unpublished.

11. Asmall S, Mahomed O. Integrated chronic diseases management manual. National Department of Health, South Africa; 2011 [cited 10 June 2014]. Available from: http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf.

12. Republic of South Africa, Department of Health. Primary care 101: Symptom-based integrated approach to the adult in primary care, 2013/14. [Internet]. 2013. Available from: https://www.health-e.org.za/wp-content/uploads/2015/04/PC-101-Guideline-v2-2013-14-2.pdf.

13. Mulcahy K, Maryniuk M, Peeples M, Peyrot M, Tomky D, Weaver T, et al. Diabetes self-management education core outcomes measures. Diabetes Educ. 2003;29(5):768-70, 73-84, 87-8. .

14. Curo Health. Individual care plan booklet. 2015. 15. Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, et

al. How we design feasibility studies. Am J Prev Med. 2009;36(5):452-7. 16. Wagner EH. Chronic disease management: what will it take to improve

care for chronic illness? Eff Clin Pract. 1998;1(1):2-4. 17. Schapira MM, Fletcher KE, Hayes A, Eastwood D, Patterson L, Ertl K, et

al. The development and validation of the hypertension evaluation of lifestyle and management knowledge scale. J Clin Hypertens (Greenwich). 2012;14(7):461-6.

18. Eigenmann C, Colagiuri R, Skinner T. Development and validation of a diabetes knowledge questionnaire. Pract Diab Int. 2011;28(4):166-70.


20. Engelgau MM, El-Saharty S, Kudesia P, Rajan V, Rosenhouse S, Okamoto K. Capitalizing on the demographic transition: tackling noncommunicable diseases in South Asia. Conference edition. The World Bank; 2011 [cited 11 November 2016]. Available from: http://siteresources.worldbank.org/SOUTHASIAEXT/Resources/223546-1296680097256/7707437-1296680114157/NCDs_South_Asia_February_2011.pdf.

21. Bloomfield GS, Baldridge A, Agarwal A, Huffman MD, Colantonio LD, Bahiru E, et al. Disparities in cardiovascular research output and citations

210

from 52 African countries: a time-trend, bibliometric analysis (1999-2008). J Am Heart Assoc. 2015;4(4).

22. Engelgau MM, Sampson UK, Rabadan-Diehl C, Smith R, Miranda J, Bloomfield GS, et al. Tackling NCD in LMIC: Achievements and lessons learned from the NHLBI-UnitedHealth Global Health Centers of Excellence Program. Glob Heart. 2016;11(1):5-15.

23. World Health Organization. Global action plan for the prevention and control of noncommunicable diseases 2013-2020. Geneva: World Health Organization; 2013 [cited 10 October 2016]. Available from: http://apps.who.int/iris/bitstream/10665/94384/1/9789241506236_eng.pdf.

24. Iwelunmor J, Blackstone S, Veira D, Nwaozuru U, Airhihenbuwa C, Munodawafa D, et al. Toward the sustainability of health interventions implemented in sub-Saharan Africa: a systematic review and conceptual framework. Implement Sci. 2016;11:43.

25. Marchal B, van Belle S, van Olmen J, Hoeree T, Kegels G. Is realist evaluation keeping its promise? A review of published empirical studies in the field of health systems reaserch. Evaluation. 2012;18(2):192-212.

26. Goicolea I, Vives-Cases C, San Sebastian M, Marchal B, Kegels G, Hurtig AK. How do primary health care teams learn to integrate intimate partner violence (IPV) management? A realist evaluation protocol. Implement Sci. 2013;8:36.

27. Dauvrin M, Lorant V. Culturally competent interventions in type 2 diabetes mellitus management: an equity-oriented literature review. Ethn Health. 2014;19(6):579-600.

28. Katz MG, Kripalani S, Weiss BD. Use of pictorial aids in medication instructions: a review of the literature. Am J Health Syst Pharm. 2006;63(23):2391-7.

29. Kripalani S, Robertson R, Love-Ghaffari MH, Henderson LE, Praska J, Strawder A, et al. Development of an illustrated medication schedule as a low-literacy patient education tool. Patient Educ Couns. 2007;66(3):368-77.

30. Negarandeh R, Mahmoodi H, Noktehdan H, Heshmat R, Shakibazadeh E. Teach back and pictorial image educational strategies on knowledge about diabetes and medication/dietary adherence among low health literate patients with type 2 diabetes. Prim Care Diabetes. 2013;7(2):111-8.


32. Deakin T, McShane CE, Cade JE, Williams RD. Group based training for self-management strategies in people with type 2 diabetes mellitus. Cochrane Database Syst Rev. 2005(2):Cd003417.

33. Balagopal P, Kamalamma N, Patel TG, Misra R. A community-based participatory diabetes prevention and management intervention in rural India using community health workers. Diabetes Educ. 2012;38(6):822-34.

34. Philis-Tsimikas A, Fortmann A, Lleva-Ocana L, Walker C, Gallo LC. Peer-led diabetes education programs in high-risk Mexican Americans improve glycemic control compared with standard approaches: a Project Dulce promotora randomized trial. Diabetes Care. 2011;34(9):1926-31.

211

35. Islam SM, Purnat TD, Phuong NT, Mwingira U, Schacht K, Froschl G. Non-communicable diseases (NCDs) in developing countries: a symposium report. Global Health. 2014;10:81.

36. Non-communicable diseases: a strategic vision. National Guideline. National Department of Health, South Africa. Unpublished.


38. World Health Organization. Global status report on noncommunicable diseases 2014; Geneva: World Health Organization; 2014 [cited 17 July 2016]. Available from: http://apps.who.int/iris/bitstream/10665/148114/1/9789241564854_eng.pdf?ua=1.


40. Alleyne G, Binagwaho A, Haines A, Jahan S, Nugent R, Rojhani A, et al. Embedding non-communicable diseases in the post-2015 development agenda. Lancet. 2013;381(9866):566-74.

41. Puoane T, Tsolekile L, Sanders D, Parker W. Chronic non-communicable diseases In: Barron P, Roma-Reardon J, editors. South African Health Review 2008. Durban: Health Systems Trust; 2008. p. 73-87.

42. Van den Broucke S, Van der Zanden G, Chang P, Doyle G, Levin D, Pelikan J, et al. Enhancing the effectiveness of diabetes self-management education: the diabetes literacy project. Horm Metab Res. 2014;46(13):933-8.

43. Schinckus L, Van den Broucke S, Housiaux M. Assessment of implementation fidelity in diabetes self-management education programs: a systematic review. Patient Educ Couns. 2014;96(1):13-21.

44. Huygens MW, Vermeulen J, Swinkels IC, Friele RD, van Schayck OC, de Witte LP. Expectations and needs of patients with a chronic disease toward self-management and eHealth for self-management purposes. BMC Health Serv Res. 2016;16:232.


46. Beaglehole R, Bonita R, Alleyne G, Horton R, Li L, Lincoln P, et al. UN high-level meeting on non-communicable diseases: addressing four questions. Lancet. 2011;378(9789):449-55.

47. Lorig KR, Ritter PL, Laurent DD, Plant K. Internet-based chronic disease self-management: a randomized trial. Med Care. 2006;44(11):964-71.

48. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ (Clinical research ed). 2007;335(7609):24-7.

49. Houts PS, Doak CC, Doak LG, Loscalzo MJ. The role of pictures in improving health communication: a review of research on attention, comprehension, recall, and adherence. Patient Educ Couns. 2006;61(2):173-90.

50. Madigage MM. The perception of professional nurses on patient centered care MA dissertation, University of South Africa; 2005.[cited 18 January

212

2017]. Available from; http://uir.unisa.ac.za/bitstream/handle/10500/2301/dissertation.pdf?sequence=1&isAllowed=y

51. Riley BH, White J, Graham S, Alexandrov A. Traditional/restrictive vs patient-centered intensive care unit visitation: perceptions of patients' family members, physicians, and nurses. Am J Crit Care. 2014;23(4):316-24.

52. Kolosa M. Patient-centered care in primary health care. SA Fam Pract. 2005;47(8):3-4.

53. Weiland S, Koczela, S. The time is now for patient-centred innovation. The Lancet Global Health Blog;, 7 October 2014 [cited 18 January 2017]. Available from: http://globalhealth.thelancet.com/2014/10/07/time-now-patient-centred-innovation.

54. SA Health. Patient and consumer centred care [Internet]. 2016 [cited 09 September 2016]. Available from: http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/clinical+resources/safety+and+quality/partnering+with+consumers+and++the+community/patient+and+consumer+centred+care.

55. Loveday M, Padayatchi N, Voce A, Brust J, Wallengren K. The treatment journey of a patient with multidrug-resistant tuberculosis in South Africa: is it patient-centred? Int J Tuberc Lung Dis. 2013;17(10 Suppl 1):56-9.

56. Vandelanotte C, De Bourdeaudhuij I, Brug J. Acceptability and feasibility of an interactive computer-tailored fat intake intervention in Belgium. Health Promot Int. 2004;19(4):463-70.

57. Betsch C, Bohm R, Airhihenbuwa CO, Butler R, Chapman GB, Haase N, et al. Improving medical decision making and health promotion through culture-sensitive health communication: an agenda for science and practice. Med Decis Making. 2016;36(7):811-33..


59. Ajzen I. The Theory of Planned Behaviour. Organizational Behaviour and Human Decision Process. 1991;50:179-211.

60. Ramjee S, Vieyra T, Abraham M, Kaplan J, Taylor R. National Health Insurance and South Africa's private sector. In: Padarath A, English R, editors. South African Health Review 2013/14. Durban: Health Systems Trust; 2014. p. 93-104.

213

CHAPTER 10 - Study protocol

Effectiveness of using a care-plan booklet for people

with diabetes: A cluster randomized controlled trial

214

Introduction

Southern Africa suffers a double burden of communicable and non-communicable

diseases (NCDs) due to a demographic and socio-economic transition

characterized by rapid unplanned urbanization and a proliferation of unhealthy

lifestyles. The chronic disease burden is much felt in low- and middle-income

countries, where it is estimated to further increase as a result of the effects of

demographic change, globalization and urbanization (1). It is estimated that about

80% of deaths from chronic diseases worldwide occur in developing countries. By

the year 2040 the number of people living with diabetes in Africa is expected to

increase from 415 million in 2015 to 612 million (2). However, in sub-Saharan

Africa (SSA), little consideration is given to address this problem, which could be

explained by the fact that the leading risks of morbidity and mortality are still

undernutrition and unsafe sex (3-5).

Of the countries in SSA, South Africa has the highest level of obesity in women

aged 20 years or more, and consequently faces a great problem of chronic

diseases (6). It is estimated that the NCD burden in South Africa is two to three

times higher than in high-income countries (7).

Among the chronic diseases, type 2 diabetes is one of the leading NCDs in South

Africa (1, 8). The International Diabetes Federation (IDF) reported in 2015 that

South Africa had a 7.0 percent national prevalence of diabetes in the age group 20

to 79 (2). As a result, of all the conditions seen in public primary healthcare (PHC)

in South Africa, type 2 diabetes ranks the fourth most common condition (1). South

Africa and Cameroon are also among the top countries in Africa where diabetes

leads to complications, which is the case in 50 percent of diabetic cases. Around

25 percent of people with diabetes type 2 were found to already have retinopathy

at the time of diagnosis, and around 49 percent of all neuropathic complications

consisted of erectile dysfunction (3).

215

Self-management of chronic diseases

Beaglehole et al argue that in order to overcome the burden of chronic conditions

like diabetes, developing countries have to reinforce the drug treatment, education

and continuous care of patients (9). Indeed, effective management of chronic

diseases like diabetes not only requires adequate medication use, but also self-

management by the patient and his or her family or other informal caregivers (10).

Therefore, self-management is highly recommended, especially in resources-poor

settings in countries like South Africa. It is estimated that 80 to 90 percent of overall

care for chronic patients is performed by the patients themselves or their informal

caregivers (11). This responsibility demanded from individuals requires support

from health service providers. Self-management of a chronic disease is achieved

when a patient takes a lead role in managing his or her chronic condition. To

accomplish effective self-management, it is therefore crucial that health providers

work collaboratively with patients and their families to support and empower them

(11, 12).

In South Africa, many of the patients with diabetes are seen at the public health

facilities. Annually approximately 17 million cases treated at public health facilities

are cases of diabetes and/or hypertension (7, 13, 14). However, despite the fact

that they receive medication and care, many of the diabetic patients are struggling

to achieve treatment targets (15). Structured group education programs can

support the patients in their efforts. The results of a randomized controlled trial by

Mash et al evaluating the effectiveness of a structured group education program for

type 2 diabetes patients in Cape Town, South Africa concluded that a structured

group education program was cost effective (1). The group intervention had one

session monthly, each with a 60 minute duration. Seventeen community health

centers participated and were randomized into intervention and control centers.

216

Statement of problem

While the evidence shows that self-management education for chronic disease

patients is effective, the vast majority of existing self-management education

programs have been developed, implemented and evaluated in developed

countries. As such, the applicability of these findings to developing countries is

uncertain (16). In South Africa, the Integrated Chronic Disease Management

(ICDM) model acknowledges that self-management should be an integral

component of chronic disease care and treatment, but in reality this component of

care is still neglected by healthcare providers (17). Recent qualitative studies

exploring the experiences of chronic patients and their motivation for self-

management found many barriers for patients to achieve effective self-

management (8, 18). These include healthcare provider attitudes, low health

literacy, lack of educational materials, medication stock-outs, lack of self-efficacy

and a perceived lack of social support (8, 18, 19). To address these barriers,

patients and providers alike have suggested that a take-home booklet combining

information about the disease and its treatment with space to monitor progress and

note questions to prepare for consultations would be a useful adjunct to treatment

(18). A pilot study revealed that such a care-plan booklet was indeed effective in

increasing hypertension knowledge in a resource-limited setting (Chapter 8).

Aim, objectives and hypothesis

The aim of this study is to evaluate the effectiveness of using a diabetes care-plan

booklet during consultations between patients and healthcare providers (profes-

sional nurses and physicians) in PHC facilities of Tshwane district, South Africa.

The study has four objectives:

Objective 1: To evaluate the effectiveness of using the care-plan booklet during

consultations by assessing group changes with regard to the following outcomes:

217

Primary outcome: HbA1c values

Secondary outcomes:

Individual dispositions: health literacy, diabetes knowledge, attitudes to

diabetes, self-efficacy, locus of control

Behavior outcomes: healthy eating, self-monitoring of blood glucose, taking

medication, problem solving, risk reduction and healthy coping

Health-related outcomes: means for blood pressure, fasting blood glucose,

total cholesterol, waist circumference and mean weight loss, and quality of

life and wellbeing

Objective 2: To explore the experiences of patients who received and used the

care-plan booklet with their healthcare providers during medical consultations.

Objective 3: To explore the experiences of healthcare provides who used the

care-plan booklet with their patients. (Healthcare providers include doctors, nurses,

health promoters, dieticians, and community health workers).

Objective 4: To evaluate the fidelity of using the care-plan booklet with diabetic

patients.

The hypothesis for this study is as follows:

Patients who use the booklet during medical consultations with their healthcare

providers will experience improved patient-provider interaction and will have

improved glycemic control as measured by the HbA1c test.

Method

Study design

To test the hypothesis, a cluster randomized controlled trial accompanied by a

qualitative process evaluation will be employed. The Consolidated Standards of

Reporting Trials (CONSORT) 2010 statement: extension to cluster randomized

218

trials were applied in the design of this study (20). The trial design is shown in

Figure 10.2. The trial will be registered in an appropriate registry, for example the

International Standard Randomized Controlled Trials Number (ISRCTN) registry,

which is recognized by the World Health Organization (WHO) and the International

Committee of Medical Journal Editors (ICMJE) (21).

Figure 10.1 Trial flow chart

Setting

The study will take place in PHC clinics in Tshwane district, South Africa. A cluster

is defined as a group of patients being attended to by one physician or professional

nurse at each clinic.

219

Inclusion and exclusion criteria

Inclusion criteria will be patients with type 2 diabetes, seen by a specific healthcare

provider. Patients should be 18 years or older and should have signed the

informed consent document, regardless of whether they are on insulin or oral medi-

cation.

Exclusion criteria will be patients not willing to participate, type 1 diabetic patients,

and patients with mental illness, dementia or acute conditions.

The intervention

The intervention will be described according to the template developed for

Intervention Description and Replication (TIDieR) guidelines by Hoffmann et al.

(22).

Brief name of the intervention:

A care-plan booklet for patients with diabetes for use in medical consultations with

health service providers in South Africa

Why implement the intervention?

Self-management of patients with chronic diseases can lead to improved clinical

outcomes, fewer emergency room visits, increased patient responsibility and en-

hanced adherence to treatment (23-25). A pilot study in a resource-limited setting

in South Africa has indicated that the use of the care-plan booklet with healthcare

providers during medical consultation improves disease specific knowledge for

hypertension (26).

What materials will be used?

The intervention is underpinned by the Health Belief Model (HBM) and involves the

use of an A5 care-plan booklet (Appendix A) by diabetic patients and their health-

220

care providers during consultation. An existing care-plan booklet used in the private

health sector served as a model for developing a more focused and contextually

adapted care-plan booklet to fit a target population with a low socio-economic

status and attending public health facilities. The results of three previous studies

(17, 18, 27) and existing educational materials for diabetes informed the structure

and content of the booklet (28). A first draft of the current version of the booklet

was circulated among different stakeholders who commented on its content, after

which a prototype booklet was finalized.

The prototype booklet was then tested for feasibility in a qualitative study, which led

to further adaptations of cover and the contents of the booklet using the feedback

by patients and healthcare providers (29). A professional graphic designer will be

assigned to provide the final layout and design of the booklet manuscript presented

in Appendix A. As the prototype version of the booklet was only available in

English, one of the official languages in South Africa and the language of

schooling, the booklet will also be translated into the major indigenous languages

spoken by the target study population, for example isi Zulu, Sepedi and Setswana,

to better take the needs of patients and providers into account. The contents of the

final booklet are presented in Figure 10.1.

The HBM is a theory of health behavior extensively used in health education and

patient education. The HBM is based on the assumption that behavior change is

influenced by an individual’s beliefs or perceptions about the disease(s) and

available ways of preventing the disease from occurring. The theory has four main

constructs: perceived severity, perceived susceptibility, perceived benefits, and

perceived barriers. More recently, the theory has been expanded to also include

cues to action, motivating factors and self-efficacy (30-33). Using this theory, we

assume that the use of the care-plan booklet during consultation with healthcare

providers will improve the patients’ awareness of the perceived seriousness,

susceptibility, benefits and at the same time overcome the barriers to change. This

will then lead to behavior change that will improve the health and behavior-related

outcomes.

221

What the booklet is all about

Making most of the medical consultation (tips for patients)

A set of minimum tests per patient per year

Preparing for the consultation: spaces for recording vital signs and for use in provider-patient consultations

Vital signs flow chart

Annual vital signs flow chart

General notes by healthcare provider

National guidelines for glucose values

Information on diabetes: definition, physiology, signs and symptoms, complications, health education messages

Lifestyle change messages

Activity diary

Pocket for appointment card at the inside back cover

Emergency telephone numbers on outside back cover

Figure 10.2 Contents of the booklet

What procedures will be followed?

The booklets in the intervention clusters will be delivered to the patients by the

health service providers (doctors/nurses) at the month zero consultation. The

health promoters will introduce the booklet to the patients in the waiting area,

explaining in detail how it can be used by both the patient and the health service

provider. At this time in the waiting area the researchers will explain the study and

the informed consent form in detail. During consultation the nurse/doctor will ask

the patient if he or she wants to participate. If the patient agrees to participate, the

booklet will be issued and the patient will be requested to complete the informed

consent form outside. Once the patient leaves the consultation room with the book-

let the researchers will request the patient to complete the informed consent form.

A baseline questionnaire collecting demographic data will be administered by the

researchers at month zero in the intervention and the control groups. The patients

in the intervention group will be informed to bring the booklet every time they have

a medical consultation. The providers will then use the booklet with the patients

during the next consultations. If patients have questions that are recorded in the

222

booklet, they record the answers next to the questions. Short-term follow-up will be

done at six months and long-term follow-up will be done at one year follow-up.

Who will provide the intervention?

Previous studies (18, 29) reported that in the Public Health System of South Africa

health service is provided to chronic patients by a multidisciplinary team, including

doctors, nurses, dieticians, health promoters and community health workers

(CHWs). All participating healthcare providers in the intervention arm will be trained

in a one-day workshop focused on the structure of the intervention, how to use the

care-plan booklet with patients and the provider log sheet (Appendix B), and

communication skills. Soon after training, patient recruitment will begin. In addition,

training will include brief behavior change counselling skills to all the providers in

the intervention. Previous research has indicated that training primary care

providers in brief behavior change counseling changes their clinical practice (34).

How will the intervention be implemented?

Because of the nature of the intervention, the booklet will be used on a one-on-one

basis with a health service provider during medical consultation. Patients can share

the booklet at home with friends and family and if need be record their questions in

the booklet. Upon consulting with the doctor the patient may use the booklet in

order to recall the questions. The nurses taking the vital signs will also double

record the vital signs in the patient’s booklet, so that there is a trend to which the

patient and the health provider can refer to during consultations.

Health promoters will be involved in explaining the use for the booklet to the patient

during the waiting time and also during their consultation with the patients.

Community health workers will be involved in assisting patients to use the booklets

or explaining it to the patients at their homes during the CHWs’ routine visits.

Dieticians and other health service providers will also be involved in using the

booklet with patients during individual consultation if necessary. As an additional

223

use, the information in the booklet can be used during patient support group to

motivate members to self-manage their illnesses.

Where will the intervention occur?

The intervention will take place in different locations throughout the journey of the

patient at the intervention facility at the time for a medical consultation. Firstly, the

intervention will take place in the waiting area where the health promoter will

explain or reinforce the use and importance of the self-management booklet to

patients. Secondly, during the taking of vital signs, the nurses will also record the

vital signs observations in the patients’ booklet. Thirdly, during the medical

consultation with the doctor or nurse, the booklet will serve as a vehicle of

interaction between the patient and the health service provider. Fourthly, the book-

let will be used in the health facility and at the patient’s home – in the health facility

with other health service providers like health promoters, dieticians or during

support groups, and at home with family and friends.

When and how much?

Since the use of the care-plan booklet with the health service provider depends on

the appointments made and on the level of control of patients in terms of vital

signs, there is no set number of times when the patient and provider should use the

booklet during consultation. A patient whose vital signs are under control normally

sees a doctor once every three months, but those whose vital signs are not under

control will return to the health facility within one or two months, depending on the

level of control. A minimum of two-follow-up visits will be required for each patient

at six months follow-up and at least four times at one year follow-up. The log sheet

will indicate how many times a patient has been seen.

How will the intervention be tailored?

The intervention will be tailored to the target population in different ways. Firstly,

the care-plan booklet will be translated into the indigenous language(s) of the

224

target population in the areas where the study will take place, thus meeting the

requests of patients in previous studies (18, 29). Secondly, the booklet will be

further adapted to include the pictures and content that patients requested. Thirdly,

questionnaires will be in English and will be simplified for the target population.

Interpretation assistance and assistance with completion of the questionnaire will

be available for patients with limited English proficiency or functional literacy. The

booklet will also be sent to a graphic designer for giving it a professional

appearance.

Modifications?

More information on implementation fidelity will be reported after the trial has been

conducted.

How well (planned) and how well (actual)?

Information on fidelity on the implementation of the intervention will be reported

after the intervention has been implemented. However, fidelity will be assured by

training the health service providers who will be responsible for delivering the

intervention.

Sample size calculation

A previous study from Tshwane district, our target district, reported a mean HbA1c

of 8.8% (SD=2.4) and an intra-cluster correlation coefficient (ICC) of 0.05 (35).

These figures were used to calculate the cluster number and sample size for each

cluster for a 1.5% reduction in HbA1c. Two scenarios were observed, both based

on the 0.05 level of significance but with different levels of power.

Firstly, at power of 0.8, the study will require 8 clusters in each arm with 10

patients per cluster. The total sample size for the first scenario would

therefore be 16 clusters (physicians) and 160 patients.

225

Secondly, at power of 0.9, the study will require 11 clusters in each arm

with 10 patients per cluster. The total sample size would be 22 clusters and

220 patients.

The second scenario was selected as more feasible. To cover for loss to follow-up,

15 patients will be recruited per cluster, giving a total sample size of 270 patients.

The target district has a total 24 City of Tshwane PHC clinics that could be involved

in the study.

Randomization

The PHC clinics will be the unit of randomization in order to avoid contamination

and a trained, independent team will conduct the randomization. All clinics that

agree to participate will be allocated randomly by computer generated random

numbers. A cluster is a group of patients seen by one specific healthcare provider

who will be involved in the study. The patients in the control group will receive

usual care at their respective clinics. Usual care consists of medical consultations

without the care-plan booklet.

Measurements

Measurements will include HbA1c, blood pressure, fasting blood glucose, triglycer-

ides, cholesterol and body weight. In addition, a questionnaire (Appendix C) will be

used to collect data on the following:

Demographics

Demographic data will be collected with questionnaire items on gender, age, length

of time since diabetes diagnosis, marital status, living situation, education level,

language, employment status, type of medication and duration since diagnosis.

226

Individual dispositions

General health literacy: The questionnaire developed by Ishikawa et al focusing on

functional, communicative and critical health literacy will be used (36). Functional

literacy requires basic reading and writing skills. Communicative literacy involves

advanced skills that enable the extraction of information, defining meaning and

applying that information to everyday life. Critical literacy requires a set of more

advanced skills in order to evaluate information from different sources and use it to

take charge of one’s life (36, 37).

Diabetes knowledge: A 24-item questionnaire developed by Garcia et al will be

used to collect information on diabetes knowledge (38). This tool was chosen

because it is a generic version and does not need any adaptations, except for

question 8 where 210mg/dl is replaced by 11.65mmol/L to fit the country of study’s

standard of measurement.

Diabetes attitudes: The revised diabetes attitudes scale-III (DAS-III) will be used to

collect information on attitudes to diabetes (39). This is a 33 Likert-item scale with a

scoring between one (strongly disagree) and five (strongly agree). The items

measure the psychosocial impact of diabetes and patient autonomy, attitudes

pertaining to needs for special training for professionals, and seriousness of the

disease. This questionnaire has previously been used in South Africa (40).

Self-efficacy: The questionnaire developed by the Stanford University on diabetes

self-management will be used (41), as it has been previously applied in South

Africa (42, 43). (Self-efficacy relates to a patient’s confidence in his/her ability to

perform self-management activities.)

Locus of control: A questionnaire developed by Trento et al will be used to collect

information on locus of control (44). This questionnaire has also been used

successfully in the South African context (42, 43). (Locus of control refers to a

person’s belief in his/her ability to control his/her illness [internal locus of control]

versus the belief that he/she cannot control his/her illness with this control being

227

placed in the hands of others [external locus of control] or the belief that the ability

to control is based on luck [chance locus of control].)

Behavioral outcomes

Diabetes behaviors: A questionnaire developed based on the diabetes behaviors of

the American Association of Diabetes Education (AADE) and previously used by

the Diabetes Literacy project will be used in this proposed study (45, 46). (There

are seven diabetes behavioral outcomes: healthy eating, being active, monitoring

of blood glucose, taking medication, problem solving, reducing risks and healthy

coping.)

Health outcomes

Disease-related outcomes: HbA1c, fasting blood glucose and cholesterol levels will

be measured.

Reduced health risks: Body weight, waist circumference, cholesterol, triglycerides,

high density lipoprotein (HDL), low density lipoprotein (LDL) and blood pressure will

be measured.

Health-related quality of life and wellbeing will be measured using a previously

validated questionnaire for the Diabetes Literacy project (46).

Provider outcomes

Provider outcomes of this intervention include:

Improved communication with patients

Use of the booklet during medical consultation

228

Process evaluation

Process evaluation aims to monitor, improve progress and increase the chances of

the intervention being successful (47). Process evaluation makes it possible to

identify effective components of an intervention, the circumstances that make an

intervention effective, and the beneficiaries of an intervention (to whom the

intervention is effective) (48). This type of evaluation is important to improve and

maintain successful public health interventions.

In this proposed study, the experiences of healthcare providers who used the care-

plan booklet during consultation will be assessed by means of conducting focus

group discussions at six and twelve months follow-up. Four focus groups will be

held, two at each time interval. Provider focus groups will take place at venues

convenient for the participants.

Patient experiences will be evaluated by means of in-depth interviews with two

patients per clinic and convenient sampling will be used to recruit patients. The

venue(s) for conducting patient interviews will be decided upon according to the

patients’ preference, either at the facility or in their homes. The interviews with the

patients will also be done at the two time intervals of six and twelve months follow-

up. A semi-structured interview guide will be used (Appendix D).

Data collection

Data will be collected at baseline, six and twelve months follow-up. Hired nurses

will be collecting blood and taking physical measurements. Standard operating

procedures will be used in measuring waist circumference by tape measures,

weight by electronic scales and blood pressure by the Omron digital blood pressure

monitor or similar device. HbA1c and total cholesterol will be sent to the

laboratories servicing the public health facilities (National Health Laboratory

Service). Research assistants will receive one day of training to administer

questionnaires and will be supervised by the project coordinator throughout the

research period. Focus group discussions and interviews with providers and

229

patients will be conducted by the primary investigator. Blinding will not be

applicable in this kind of study.

Data analysis

Descriptive statistics (means and frequencies) will be used to describe the data. In

addition an intent-to-treat analysis will be used to evaluate primary and secondary

outcomes. Anova with a fixed effect (i.e. intervention) and a random effect (i.e.

cluster) will be performed (SAS procedure MIXED). Qualitative data from interviews

and focus group discussions will be transcribed and translated and analyzed using

Atlas.ti or similar software.

230

Logistical issues

Time frame

231

Budget and resources

Item description ZAR

Transport R 5 000

Computers (x3) R 15 000

Printing and photocopying R 2 000

Research assistants (x11) R 55 000

Data capture and analysis R 50 000

Dissemination of results R 100 000

Other

Total cost R227 000

Contributors and authorship

The ICMJE criteria will be used to define the role of authors and contributors (49).

Conclusion

There is paucity of literature on the effectiveness of diabetes self-management

programs in developing countries, as the vast majority of intervention programs

have been developed, implemented and evaluated in developing countries (16).

However, as diabetes continues to affect millions of people in developing countries,

it is imperative that self-management programs also be developed and imple-

mented in resource-challenged countries like South Africa.

Results from existing research highlight the fact that very little effort has been

devoted to the prevention of chronic conditions like diabetes in developing

countries (50, 51). This study will contribute to the much needed literature on the

effectiveness of self-management programs in resource-limited countries and will

add to evidence-informed practice. The results of this study will provide information

to governments and policy makers from resource-limited settings on potential

232

implementation strategies to embark on in the prevention and control of diabetes

and other chronic conditions, with specific emphasis on self-management.

References

1. Mash R, Kroukamp R, Gaziano T, Levitt N. Cost-effectiveness of a diabetes group education program delivered by health promoters with a guiding style in underserved communities in Cape Town, South Africa. Patient Educ Couns. 2015;98(5):622-6.

2. International Diabetes Federation. IDF Diabetes Atlas, 7th edn. Brussels, Belgium: International Diabetes Federation; 2015 [cited 20 January 2016]. Available from: http://www.diabetesatlas.org/resources/2015-atlas.html.

3. de-Graft Aikins A. Africa's neglected epidemic:multidisciplinary research, intervention and policy for chronic diseases. Conference report May 2010. London: British Academy; 2010. [cited 18 January 2017]. Available from: https://ncdalliance.org/sites/default/files/resource_files/Africa's%20Neglected%20Epidemic%20-%20British%20Academy%20Report%202010.pdf.

4. World Health Organization. The global burden of chronic. [Internet]. [cited 10 August 2015]. Available from: http://www.who.int/nutrition/topics/2_background/en/.

5. Forouzanfar MH, Alexander L, Anderson HR, Bachman VF, Biryukov S, Brauer M, et al. Global, regional, and national comparative risk assessment of 79 behavioural, environmental and occupational, and metabolic risks or clusters of risks in 188 countries, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2015;386(10010):2287-323.


7. Lalkhen H, Mash R. Multimorbidity in non-communicable diseases in South African primary healthcare. S Afr Med J. 2015;105(2):134-8.

8. Murphy K, Chuma T, Mathews C, Steyn K, Levitt N. A qualitative study of the experiences of care and motivation for effective self-management among diabetic and hypertensive patients attending public sector primary health care services in South Africa. BMC Health Serv Res. 2015;15:303.

9. Beaglehole R, Epping-Jordan J, Patel V, Chopra M, Ebrahim S, Kidd M, et al. Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care. Lancet. 2008;372(9642):940-9.

10. Van den Broucke S, Van der Zanden G, Chang P, Doyle G, Levin D, Pelikan J, et al. Enhancing the effectiveness of diabetes self-management

233

education: the diabetes literacy project. Horm Metab Res. 2014;46(13):933-8.

11. deSilva D. Evidence. Helping people help themselves. A review of evidence considering whether it is worthwhile to support self-management: London: The Health Foundation; 2011 [cited 14 March 2015]. Available from: http://www.health.org.uk/publication/evidence-helping-people-help-themselves.

12. Lukewich J, Mann E, VanDenKerkhof E, Tranmer J. Self-management support for chronic pain in primary care: a cross-sectional study of patient experiences and nursing roles. J Adv Nurs. 2015;71(11):2551-62.

13. Republic of South Africa. Strategic Plan for the Prevention and Control of Non-Communicable Diseases. Department of Health; 2013 [cited 30 May 2014]. Available from: http://www.health-e.org.za/wp-content/uploads/2013/09/NCDs-STRAT-PLAN-CONTENT-8-april-proof.pdf.

14. Folb N, Timmerman V, Levitt NS, Steyn K, Bachmann MO, Lund C, et al. Multimorbidity, control and treatment of noncommunicable diseases among primary healthcare attenders in the Western Cape, South Africa. S Afr Med J. 2015;105(8):642-7.

15. Bradshaw D, Levitt N, Nojilana B. Non-communicable disease: a race against time. Policy brief. South African Medical Research Council; 2011 (updated 2014) [cited 12 December 2015]. Available from: http://www.mrc.ac.za/policybriefs/raceagainst.pdf.

16. Mendis S. Research Is essential for attainment of NCD targets and Sustainable Development Goals. Glob Heart. 2016;11(1):139-40.



19. Parker W A, Steyn N P, Levitt N S, Lombard C J. Health promotion services for patients having non-communicable diseases: feedback from patients and health care providers in Cape Town, South Africa. BMC Public Health. 2012;12:503.

20. Campbell MK, Piaggio G, Elbourne DR, Altman DG. Consort 2010 statement: extension to cluster randomised trials. BMJ. 2012;345:e5661.

21. BioMed Central.International Standards Randomised Controlled Trials Number (ISRCTN) registry. [Internet]. 2016 [cited 05 January 2017]. Available from: http://www.isrctn.com/.

22. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.

23. Lorig K R, Ritter P, Stewart A L, Sobel D S, Jr. BBW, Bandura A, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001;39(11):1217-23.

234

24. Lorig K R, Ritter P L, Laurent D D, Plant K. Internet-based chronic disease self-management: a randomized trial. Med Care. 2006;44(11):964-71.

25. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1-7.

26. Dube L, Van den Broucke S, Bergh, A-M, D'Hoore W. Enhancing diabetes and hypertension health literacy in a South African township: a pilot study. Submitted.

27. Dube L, Van den Broucke S, Housiaux M, D'Hoore W, Rendall-Mkosi K. Type 2 Diabetes selfmanagement education programs in high and low mortality developing countries. Diabetes Educ. 2015;41(1):69-85.

28. Department of Health, South Africa. Nutritional management of diabetes [Pamphlet].


30. Cao ZJ, Chen Y, Wang SM. Health belief model based evaluation of school health education programme for injury prevention among high school students in the community context. BMC Public Health. 2014;14:26.


32. Abraham C, Sheeran, P. The Health Belief Model. In: Conner M, Norman, P, editors. Predicting and changing health behavior. 3rd ed. Berkshire: McGraw-Hill Education; 2015.

33. Raingruber B. Contemporary health promotion in nursing practice. Burlington: Jones & Bartlett Learning, LLC; 2014.

34. Malan Z, Mash B, Everett-Murphy K. Evaluation of a training programme for primary care providers to offer brief behaviour change counselling on risk factors for non-communicable diseases in South Africa. Patient Educ Couns. 2016;99(1):125-31.

35. Webb EM, Rheeder P, Van Zyl DG. Diabetes care and complications in primary care in the Tshwane district of South Africa. Prim Care Diabetes. 2015;9(2):147-54.

36. Ishikawa H, Takeuchi T, Yano E. Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care. 2008;31(5):874-9.

37. Nutbeam D. Evaluating health promotion: progress, problems and solutions. Health Promot Int. 1998;13(1):27-44.

38. Garcia AA, Villagomez ET, Brown SA, Kouzekanani K, Hanis CL. The Starr County Diabetes Education Study: development of the Spanish-language diabetes knowledge questionnaire. Diabetes Care. 2001;24(1):16-21.

39. Anderson RM, Fitzgerald JT, Funnell MM, Gruppen LD. The third version of the Diabetes Attitude Scale. Diabetes Care. 1998;21(9):1403-7.

235

40. Muchiri J, Gericke, GJ, Rheeder P. Impact of nutrition education on diabetes knowledge and attitudes of adults with type 2 diabetes living in a resource-limited setting in South Africa: a randomised controlled trial. JEMDSA. 2016;21(2):26-34.

41. Stanford Patient Education Research Center. Diabetes Self-Efficacy Scale [Internet]. [cited 18 October 2016]. Available from: http://patienteducation.stanford.edu/research/sediabetes.html.

42. Mash B, Levitt N, Steyn K, Zwarenstein M, Rollnick S. Effectiveness of a group diabetes education programme in underserved communities in South Africa: pragmatic cluster randomized control trial. BMC Fam Pract. 2012;13:126.

43. Mash RJ, Rhode H, Zwarenstein M, Rollnick S, Lombard C, Steyn K, et al. Effectiveness of a group diabetes education programme in under-served communities in South Africa: a pragmatic cluster randomized controlled trial. Diabet Med. 2014;31(8):987-93.

44. Trento M, Passera P, Miselli V, Bajardi M, Borgo E, Tomelini M, et al. Evaluation of the locus of control in patients with type 2 diabetes after long-term management by group care. Diabetes Metab. 2006;32(1):77-81.

45. Mulcahy K, Maryniuk M, Peeples M, Peyrot M, Tomky D, Weaver T, et al. Diabetes self-management education core outcomes measures. Diabetes Educ. 2003;29(5):768-70, 73-84, 87-8. .

46. Röthlin F, Pelikan J, Ganahl K. Protocol for a pre-post evaluation study on the effectiveness of existing DSM programs. .Working paper. The Diabetes Literacy Project; 2014. Unpublished.

47. Executive Agency for Health and Consumers (EAHC). Project management in public health in Europe; 2011 [cited 02 January 2017]. Available from: http://ec.europa.eu/chafea/documents/health/leaflet/project_management2.pdf.

48. Linnan L, Steckler A, editors. Process evaluation for public health interventions and research. San Francisco, CA: John Woley & Sons; 2002.

49. International Committee of Medicl Journal Editors (ICMJE). Defining the role of authors and contributors; 2017 [cited 05 January 2017]. Available from: http://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html.


51. Unwin N, Setel P, Rashid S, Mugusi F, Mbanya JC, Kitange H, et al. Noncommunicable diseases in sub-Saharan Africa: where do they feature in the health research agenda? Bull World Health Organ. 2001;79(10):947-53.

237

GENERAL CONCLUSION – Conditions for effective

implementation

238

The essence of this thesis revolves around the current status of self-management

education programs for chronic diseases in South Africa and the conditions for their

effective implementation. The underlying aim was to contribute to the scarce

literature on education for self-management of chronic diseases in developing

countries, especially in sub-Saharan Africa (SSA). By way of conclusion, we would

like to draw upon the lessons learnt from the studies presented in this thesis to

further assist the implementation of chronic disease self-management programs in

resource-limited settings. These conditions include, but are not limited to, the

attention that is paid to the context and characteristics of the target population, the

capacities of health promoters and community health workers, a healthcare system

that functions at some minimal level, networking and liaising at different levels, and

most importantly a staggered implementation.

As highlighted in Chapter 2 of this thesis, the context in which the target population

lives is a crucial element to be considered since, among other factors, contextual

factors affect the development of chronic diseases and the way they can be

managed (1). We also discussed the health context of South Africa and referred to

the two healthcare systems (formal-westernized and informal-traditional) that

operate in parallel (2), illustrating how these two systems can complement or be in

direct conflict with each other (3). As a consequence, self-management education

in South Africa must take account of the fact that the target population, apart from

receiving messages from the primary healthcare (PHC) facilities, may also receive

information from other sources which may conflict with the received messages.

The language in which self-management education is provided is also an important

element. South Africa has 11 official languages, and it is important to align

language(s) and education materials with the specific target populations for which

the intervention is meant. Nevertheless, it is possible to make some trade-offs in

terms of choice of language, as seven of the South African languages belong to

two main language families – the Nguni and Sotho families – and mutual

comprehension is often possible. Nguni languages include isiZulu, isiXhosa,

239

isiNdebele and siSwati. Sotho languages include Sesotho sa Leboa/Sepedi,

Setwana and Sesotho (4).

In terms of capacity building, it is imperative that health promoters and community

health workers (CHWs) are trained in chronic diseases self-management and that

they are brought on board. The shortage of human resources which is

characteristic of resource-limited setting was noted in Chapters 3 and 4. One way

to address this problem is to involve community health workers and let them play

an important part in the roll-out of a program, with professionals fulfilling

supervisory roles (5, 6). In the study reported in Chapter 7, health service providers

referred to the significant role CHWs and health promoters could play in the

implementation of the care-plan booklet (7). However, for CHWs and health

promoters to take up this role they need to be trained and their capacity to act in

complex roles should be strengthened, thereby ensuring quality of care (8, 9). Not

only non-professional health workers will need to be trained, but also the capacities

of professional health service providers’ (doctors and nurses) will need to be

enhanced. Other studies have already pointed out the need for the training of

primary care providers in brief behavior change counseling and motivational

interviewing in South Africa’s primary care facilities (10, 11). This can be extended

with adequate training in chronic diseases self-management education techniques.

As noted in the studies reported in this thesis, the implementation of chronic

disease self-management education interventions in primary care settings requires

a healthcare system that functions at a minimal level. In many instances,

healthcare facilities in resource-limited settings, especially in the public health

system, are lacking in many areas, such as staff and materials for educating

patients (12, 13). However, this shortage can partly be overcome through task-

shifting (e.g., by assigning some tasks to CHWs as outlined above) and through

liaison at and between different levels of the health system and during the different

stages of the intervention. Such task shifting could ensure the smooth

implementation of self-management education interventions and at the same time

identify problem and solutions.

240

Many developing countries are at the moment facing a double burden of

communicable and non-communicable diseases (14-16). Addressing this double

burden calls for an integrated approach, especially in view of the problem of

comorbidities (16). The “old” approach of dealing with diseases in vertical silos no

longer provides a solution. South Africa, the country focused upon in this thesis,

has recently changed its policy to dealing with chronic conditions from a vertical to

an integrated approach (17, 18). This needs to be taken into consideration when

planning, designing and implementing chronic disease self-management

interventions in resource-limited settings. Although a broad and large-scale

implementation of self-management for all chronic diseases is not feasible, a

staggered implementation of self-management education may be necessary to

ensure that all aspects are covered. Such an approach, which uses a staged

implementation process, also has other advantages, such as the reduction of risk,

allowing extra time to make improvements to the program, and engaging

stakeholders to get them on board with the change.

As self-management education is not a panacea for the treatment and

management of chronic disease, the care-plan booklet of which the development

was described in this thesis does not have the ambition to be the answer to all the

problems and challenges that patients face in their self-management (7, 19). Some

of these challenges, as noted in Chapter 5, are not related to the booklet but

pertain more to problems in the healthcare system itself (12). However, the care-

plan booklet can be seen as a tool to improve the communication and interaction

between the healthcare providers, the patients and/their or families. It builds on

and enhances the capacity of the patients to prepare for medical consultations and

to communicate during these consultations.

The care-plan booklet may seem more provider-oriented than patient-oriented, but

there is ample room for improving the booklet in further studies. Using the booklet

in conjunction with other interventions, including cell-phone or web-based

interventions, could also be explored. However, where resources are limited, the

booklet is a simple, low-cost intervention that can assist in ensuring that messages

are uniform in the consultations between providers and patients. The set of

241

minimum requirement for each patient per visit and per annum may also serve to

improve accountability of healthcare providers.

The care-plan booklet can also assist healthcare providers in complying with some

of the Batho Pele principles discussed in Chapter 9 (20). For example, the principle

of courtesy is where patients are seen as worthy to be treated with dignity,

consideration and respect. As a vehicle for interaction between patients and

providers, the booklet may assist in the communication process and encourage the

patients and the providers to interact. This communication on its own can already

be meaningful for the patients, as a lack of communication between patients and

providers was seen as a barrier to chronic disease self-management (12).

In summary, the different aspects of the contexts should be taken into

consideration when developing and implementing self-management education

programs for developing countries facing a unique double burden of disease.

Taking the above-mentioned conditions into consideration can assist in this

endeavor. However, further research is needed to fully understand the conditions

that co-determine the effectiveness of self-management education in resource-

limited settings and to find ways to enhance the effectiveness by aligning programs

and interventions to the targeted population.

References

1. Van den Broucke S. How international is health promotion? Health Promot Int. 2016;31(3):491-4.

2. Moshabela M, Zuma T, Gaede B. Bridging the gap between biomedical and traditional health practitioners in South Africa. In: Padarath A, King J, Mackie E, Casciola J, editors. South African Health Review. 2016. Durban: Health Systems Trust; 2016. p. 83-92.


4. Wikipedia. Languages of South Africa [Internet]. 2016 [cited 02 January 2017]. Available from: https://en.wikipedia.org/wiki/Languages_of_South_Africa.

242

5. Dube L, Van den Broucke S, Housiaux M, D'Hoore W, Rendall-Mkosi K. Type 2 diabetes selfmanagement education programs in high and low mortality developing countries. Diabetes Educ. 2015;41(1):69-85.




9. Tsolekile LP, Puoane T, Schneider H, Levitt NS, Steyn K. The roles of community health workers in management of non-communicable diseases in an urban township. Afr J Prim Health Care Fam Med. 2014;6(1).

10. Malan Z, Mash B, Everett-Murphy K. Evaluation of a training programme for primary care providers to offer brief behaviour change counselling on risk factors for non-communicable diseases in South Africa. Patient Educ Couns. 2016;99(1):125-31.

11. Mash R. The KM Seedat Memorial Lecture: Behaviour change counselling in the South African context. Transactions. 2014;58(1):58-62.


13. Parker WA, Steyn NP, Levitt NS, Lombard CJ. Health promotion services for patients having non-communicable diseases: feedback from patients and health care providers in Cape Town, South Africa. BMC Public Health. 2012;12:503.

14. Lopez A, Mathers, CD., Ezzati, M., Jamison, DT., Murray, CJL. Global burden of disease and risk factors. Washington, DC: The World Bank Group; 2006.



17. Asmall S, Mahomed O. Integrated chronic diseases management manual. National Department of Health, South Africa; 2011 [cited 10 June 2014]. Available from: http://www.kznhealth.gov.za/family/Integrated-chronic-disease-management-manual.pdf.

18. Mahomed OH, Asmall S. Development and implementation of an integrated chronic disease model in South Africa: lessons in the management of change through improving the quality of clinical practice. Int J Integr Care. 2015;15:e038.

243

19. Dube L, Van den Broucke S, Bergh A-M, D'Hoore W. Enhancing diabetes and hypertension health literacy in a South African township: a pilot study. Submitted.

20. SA Health. Patient and consumer centred care [Internet]. 2016 [cited 09 September 2016]. Available from: http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/clinical+resources/safety+and+quality/partnering+with+consumers+and++the+community/patient+and+consumer+centred+care.

245

PUBLICATIONS & SCIENTIFIC COMMUNICATION

Publications

1. Dube L, Van den Broucke S, Housiaux M, D'Hoore W, Rendall-Mkosi K.

Type 2 Diabetes selfmanagement education programs in high and low

mortality developing countries. Diabetes Educator. 2015;41(1):69-85

2. Dube L, Van Den Broucke S, Rendall-Mkosi K, Kalweit, K, Hosiaux M,

Dhoore W. (2015) An audit of diabetes self-management education

programs in South Africa. Journal Public Health Research. 4(581), 176–

84

3. Dube L, Rendall-Mkosi K, Van den Broucke S, Bergh A, Mafutha N. Self-

management support needs of patients with chronic diseases in a South

African township: a qualitative study. Journal of Community Health

Nursing. In Press

4. Dube L, Bergh A-M, Van den Broucke S, D’Hoore W. Feasibility of a self-

management tool for diabetes and hypertension in South Africa,

Submitted.

5. Dube L, Van den Broucke S, Bergh AM, D’Hoore W. Enhancing diabetes

and hypertension health literacy in a South African township: a pilot study.

To be submitted.

Scientific communication

Type 2 Diabetes selfmanagement education programs in high and low

mortality developing countries. Poster presentation. 49th Society of

Endocrinology, Metabolism and Diabetes of South Africa (SEMDSA),

Durban, South Africa. Dube L, Van den Broucke S, Housiaux M, D'Hoore

W, Rendall-Mkosi K.


Oral Presentation. PhD day, ULB. Brussels, Belgium. Dube L, Van Den

Broucke S, Rendall-Mkosi K, Kalweit K, Hosiaux M, Dhoore W.

246


Oral Presentation. Chronic disease Initiative for Africa: Annual network

meeting. Cape Town, South Africa. Dube L, Van Den Broucke S, Rendall-

Mkosi K, Kalweit K, Hosiaux M, Dhoore W.


Poster Presentation.World Diabetes Congress.Vancouver, Canada. Dube

L, Van Den Broucke S, Rendall-Mkosi K, Kalweit K, Hosiaux M, Dhoore

W.

Self-management support needs of patients with chronic diseases in a

South African township: a qualitative study. Poster Presentation. Curitiba,

Brazil. Dube L, Rendall-Mkosi K, Van den Broucke S, Bergh A, Mafutha N.

Individial care-plan booklet for chronic patients – a feasibility study (South

Africa). Poster Presentation. 9th European Public Health Conference.

Vienna, Austria. Dube L, Bergh A-M, Van den Broucke S, D’Hoore W.

247

APPENDICES

• Appendix A – The care-plan booklet

• Appendix B – Providers’ log sheet

• Appendix C – Questionnaire (pre & post)

• Appendix D – Semi-structured interview guide

249

APPENDIX A

250

Page intentionally left blank!

252


282


285

APPENDIX B

PROVIDER LOG SHEET

Facility name or facility code ………………………………………………………….

Provider name or code …………………………………………………………………

Patient

name or

code

Months of consultations

(Tick at each month if seen during medical consultation)

0 1 2 3 4 5 6 7 8 9 10 11 12

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12

13.

14.

15

287

APPENDIX C

PRE- & POST-TEST PATIENT QUESTIONNAIRE

Participant number: ……………………..……… Date: ………………………………

PRE- & POST-TEST PATIENT QUESTIONNAIRE

PART A: DEMOGRAPHIC INFORMATION (only for pre questionnaire)

We would first like to get some more information about yourself.

A.1 What is your name?

Surname: ………………………………. First name: …………………………….

A.2. Would you mind to give your cell number? We need it for follow-up purposes,

Phone number: ………………………………….

A.3 Home address

Street number: …………………………………. Zone: …………………………….

A.4 Gender

1 Male 2 Female

A.5 When were you born?

Date of birth: …………………………………………………..……|_Y_|_Y_|_Y_|_Y_| |_M_|_M_| |_D_| _D_|

A.6 What is your marital status?

1 Married 2 Divorced/separated

3 Single

4 Living with partner 5 Other (Please specify)

…….…………………………………………………………..

288

A.7 Whom do you stay with?

1 Family 3 Other (Please specify)

2 Alone ……..………………………………………………..

A.8 What is you first language?

1 Sepedi 5 isiZulu

9 Afrikaans

2 Setswana 6 isiXhosa

10 Tshivenda

3 Sesotho 7 isiNdebele

11 Xitsonga

4 English 8 SiSwati

12 Other (Please specify)

……………………………………………………………….

A.9 What other languages do you speak at home?

1 Sepedi 5 isiZulu

9 Afrikaans

2 Setswana 6 isiXhosa

10 Tshivenda

3 Sesotho 7 isiNdebele

11 Xitsonga

4 English 8 SiSwati

12 Other (Please specify)

……………………………………………………………….

A.10 How far did you go with your school education?

0 No schooling 4 Grade 4 7 Grade 7

10 Grade 10

1 Grade 1 5 Grade 5 8 Grade 8

11 Grade 11

2 Grade 2 6 Grade 6 9 Grade 9

12 Grade 12

3 Grade 3

289

A.11 Are you currently working?

1 Yes 2 Sometimes 3 No

A.11.1 If you are working, what job do you do?

A.12 Where do you get most of your information about health matters that are important to you? (Mark as many as applicable)

1 Nurses at the clinic 4 Magazines and books 7 Radio

2 Doctor 5 Pamphlets / Leaflets 8 TV

3 Family & friends 6 Posters 9 Other

(please specify)

……………………………………………….

A.13 Since when have you been receiving treatment for diabetes?

Year: ………………………………………….. |___|___|___|___|

PART B: GENERAL HEALTH LITERACY1

There are many situations in everyday life that are important for our health. Some are difficult, while we may find others easier. Please indicate for each of the following tasks how difficult or easy they are for you. Mark the box that describes your situation best. General health literacy

On a scale from very easy to very difficult, how easy would you say it is to:

Very easy

Fairly easy

Fairly difficult

Very difficult

B.1 …judge when you may need to get a second opinion from another doctor?

1 2 3 4

B.2 …use information the doctor gives you to make decisions about your illness?

1 2 3 4

1 Ishikawa H, Takeuchi T, Yano E. Measuring functional, communicative, and

critical health literacy among diabetic patients. Diabetes care. 2008;31(5):874-9.

290

On a scale from very easy to very difficult, how easy would you say it is to:

Very easy

Fairly easy

Fairly difficult

Very difficult

B.3 …find information on how to manage mental health problems like stress or depression?

1 2 3 4

B.4 …judge if the information on health risks in the media is reliable? (Examples: TV, Internet or other media)

1 2 3 4

B.5 …find out about activities that are good for your mental well-being? (Examples: meditation, exercise, walking, pilates etc.)

1 2 3 4

B.6 …understand information in the media on how to get healthier?(Examples: internet, newspapers, magazines)

1 2 3 4

Diabetes-specific health literacy

The next questions ask about how often you have had certain experiences as a patient and as a diabetic. Mark the box that describes your situation best.

In reading instructions or leaflets from hospitals/pharmacies, you…

Never Seldom Sometimes Often

B.7 …found that the print was too small to read. 1 2 3 4

B.8 …found characters and words that you did not know.

1 2 3 4

B.9 …found that the content was too difficult. 1 2 3 4

B.10 …needed a long time to read and understand them.

1 2 3 4

B.11 …needed someone to help you read them. 1 2 3 4

Since being diagnosed with diabetes, you have… Never Seldom Sometimes Often

B.12 …collected information from various sources.

1 2 3 4

291

Since being diagnosed with diabetes, you have… Never Seldom Sometimes Often

B.13 …extracted the information you wanted. 1 2 3 4

B.14 … understood the obtained information. 1 2 3 4

B.15 …communicated your thoughts about

your illness to someone. 1 2 3 4

B.16 …applied the obtained information to your daily life.

1 2 3 4

B.17 …considered whether the information was

applicable to your situation. 1 2 3 4

B.18 …considered the credibility of the information.

1 2 3 4

B.19 …checked whether the information was

valid and reliable. 1 2 3 4

B.20 …collected information to make health-

related decisions. 1 2 3 4

PART C: INDIVIDUAL PATIENT DISPOSITIONS

Diabetes knowledge2 Mark the box that you think is the correct answer to each statement.

Question Yes No Don’t know

C.1 Eating too much sugar and other sweet foods is a cause of diabetes

2 √1 0

C.2 The usual cause of diabetes is lack of effective insulin in the body

√2 1 0

2 Garcia AA, Villagomez ET, Brown SA, Kouzekanani K, Hanis CL. The Starr

County Diabetes Education Study: development of the Spanish-language diabetes knowledge questionnaire. Diabetes Care. 2001;24(1):16-21.

292


C.3 Diabetes is caused by failure of the kidneys to keep sugar out of the urine

2 √1 0

C.4 Kidneys produce insulin 2 √1 0

C.5 In untreated diabetes, the amount of sugar in the blood usually increases.

√2 1 0

C.6 If I am diabetic, my children have a higher chance of being diabetic.

√2 1 0

C.7 Diabetes can be cured. 2 √1 0

C.8 A fasting blood sugar level of 11.65mmol/l is too high. √2 1 0

C.9 The best way to check my diabetes is by testing my urine. 2 √1 0

C.10 Regular exercise will increase the need for insulin or other diabetic medication.

2 √1 0

C.11 There are two main types of diabetes: Type 1 (insulin--dependent) and Type 2 (non-insulin dependent).

√2 1 0

C.12 An insulin reaction is caused by too much food. 2 √1 0

C.13 Medication is more important than diet and exercise to control my diabetes.

2 √1 0

C.14 Diabetes often causes poor circulation. √2 1 0

C.15 Cuts and abrasions on diabetes heal more slowly. √2 1 0

C.16 Diabetics should take extra care when cutting their toenails.

√2 1 0

C.17 A person with diabetes should cleanse a cut with iodine and alcohol.

2 √1 0

C.18 The way I prepare my food is as important as the foods I eat.

√2 1 0

C.19 Diabetes can damage my kidneys. √2 1 0

C.20 Diabetes can cause loss of feeling in my hands, fingers and feet.

√2 1 0

C.21 Shaking and sweating are signs of high blood sugar. 2 √1 0

C.22 Frequent urination and thirst are signs of low blood sugar. 2 √1 0

293


C.23 Tight elastic hose or socks are not bad for diabetics. 2 √1 0

C.24 A healthy diet consists mostly of special foods. 2 √1 0

Diabetes attitudes3

Below are some statements about diabetes. Each numbered statement finishes the sentence “In general, I believe that...” You may believe that a statement is true for one person but not for another person or may be true one time but not be true another time. Mark the answer that you believe is true most of the time or is true for most people. Place a check mark in the box below the word or phrase that is closest to your opinion about each statement. It is important that you answer every statement. Note: The term “health care professionals” in this survey refers to doctors, nurses, and dietitians.

In general I believe that…

Strongly agree

Agree Neutral Disagree Strongly disagree

C.25 ...health care professionals who treat people with diabetes should be trained to communicate well with their patients.

5 4 3 2 1

C.26 ...people who do not need to take insulin to treat their diabetes have a pretty mild disease.

5 4 3 2 1

3 Anderson RM, Fitzgerald JT, Funnell MM, Gruppen LD. The third version of the

Diabetes Attitude Scale. Diabetes Care. 1998;21(9):1403-7.

294


Strongly agree


C.27 ...there is not much use in trying to have good blood sugar control because the complications of diabetes will happen anyway.

5 4 3 2 1

C.28 ...diabetes affects almost every part of a diabetic person’s life.

5 4 3 2 1

C.29 ...the important decisions regarding daily diabetes care should be made by the person with diabetes.

5 4 3 2 1

C.30 ...health care professionals should be taught how daily diabetes care affects patients’ lives.

5 4 3 2 1

C.31 ...older people with Type

2* diabetes do not usually get complications.

5 4 3 2 1

C.32 ...keeping the blood sugar close to normal can help to prevent the complications of diabetes.

5 4 3 2 1

C.33 ...health care professionals should help patients make informed choices about their care plans.

5 4 3 2 1

295


Strongly agree


C.34 ...it is important for the nurses and dietitians who teach people with diabetes to learn counseling skills.

5 4 3 2 1

C.35 ...people whose diabetes is treated by just a diet do not have to worry about getting many long-term complications

5 4 3 2 1

C.36 ...almost everyone with diabetes should do whatever it takes to keep their blood sugar close to normal.

5 4 3 2 1

C.37 ...the emotional effects of diabetes are pretty small.

5 4 3 2 1

C.38 ...people with diabetes should have the final say in setting their blood glucose goals

5 4 3 2 1

C.39 ...blood sugar testing is not needed for people

with Type 2* diabetes.

5 4 3 2 1

C.40 ..low blood sugar reactions make tight control too risky for most people.

5 4 3 2 1

C.41 ...health care professionals should learn how to set goals with patients, not just tell them what to do.

5 4 3 2 1

296


Strongly agree


C.42 ...diabetes is hard because you never get a break from it.

5 4 3 2 1

C.43 ...the person with diabetes is the most important member of the diabetes care team.

5 4 3 2 1

C.44 ...to do a good job, diabetes educators should learn a lot about being teachers

5 4 3 2 1

C.45 ...Type 2* diabetes is a very serious disease.

5 4 3 2 1

C.46 ...having diabetes changes a person’s outlook on life.

5 4 3 2 1

C.47 ...people who have Type

2*diabetes will probably not get much payoff from tight control of their blood sugars.

5 4 3 2 1

C.48 ...people with diabetes should learn a lot about the disease so that they can be in charge of their own diabetes care.

5 4 3 2 1

C.49 ...Type 2* is as serious

as Type 1† diabetes. 5 4 3 2 1

C.50 ...tight control is too much work.

5 4 3 2 1

297


Strongly agree


C.51e

...what the patient does has more effect on the outcome of diabetes care than anything a health professional does.

5 4 3 2 1

C.52 ...tight control of blood sugar makes sense only for people with Type 1 diabetes.

5 4 3 2 1

C.53 ...it is frustrating for people with diabetes to take care of their disease.

5 4 3 2 1

C.54 ...people with diabetes have a right to decide how hard they will work to control their blood sugar.

5 4 3 2 1

C.55 ...people who take diabetes pills should be as concerned about their blood sugar as people who take insulin.

5 4 3 2 1

C.56 ...people with diabetes have the right not to take good care of their diabetes.

5 4 3 2 1

C.57 ...support from family and friends is important in dealing with diabetes.

5 4 3 2 1

298

Self-efficacy for diabetes4

We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

C.58 How confident do you feel that you can eat three regular meals every day?

C.59 How confident do you feel that you can eat healthy food when you have to prepare or share food with other people who do not have diabetes?

C.60 How confident do you feel that you can choose appropriate healthy foods to eat?

C.61 How confident do you feel that you can get healthy food to eat every day?

C.62 How confident do you feel that you can do moderate physical activity for 15 to 30 minutes, 4 to 5 times a week? (Moderate physical activity makes your heart beat faster or gives you a slight sweat)

C.63 How confident do you feel that you know when your blood sugar is low and what to do about it?

C.64 How confident do you feel that you can take your medication according to your prescription every day?

4 Diabetes Self-Efficacy Scale [Internet]. [cited 18 October 2016]. Available from:

http://patienteducation.stanford.edu/research/sediabetes.html.

http://patienteducation.stanford.edu/research/sediabetes.html

299

C.65 How confident do you feel that you can judge when you are ill from your diabetes and should visit the clinic?

C.66 How confident do you feel that you can control your diabetes so that it does not interfere with the things you want to do in your daily life?

Diabetes-specific locus of control questionnaire5

Please tick the answer that best represents how much you agree or disagree with each of the following statements with regard to your diabetes.

Statement

Str

on

gly

dia

gre

e

Dis

agre

e

Mild

ly

dia

gre

e

Mild

ly

agre

e

Ag

ree

Str

on

gly

agre

e C.67 I can avoid complications 1 2 3 4 5 6

C.68 When my sugar is high it’s because of something I’ve done

1 2 3 4 5 6

C.69 Good health is a matter of luck 1 2 3 4 5 6

C.70 Regular clinic visits avoid problems 1 2 3 4 5 6

C.71 What I do is the main influence on my health

1 2 3 4 5 6

C.72 Avoiding complications is a matter of luck

1 2 3 4 5 6

C.73 I should visit the clinic whenever I feel sick

1 2 3 4 5 6

C.74 My blood sugars levels are out of 1 2 3 4 5 6

5 Trento M, Passera P, Miselli V, Bajardi M, Borgo E, Tomelini M, et al. Evaluation

of the locus of control in patients with type 2 diabetes after long-term management by group care. Diabetes Metab. 2006;32(1):77-81.

300

Statement

Str

on

gly

dia

gre

e

Dis

agre

e

Mild

ly

dia

gre

e

Mild

ly

agre

e

Ag

ree

Str

on

gly

agre

e

my control

C.75 Blood sugars are controlled by luck 1 2 3 4 5 6

C.76 I should only do what my doctor or nurse tells me

1 2 3 4 5 6

C.77 I never know why my diabetes is out of control

1 2 3 4 5 6

C.78 I rely on the doctor or nurse to keep me healthy

1 2 3 4 5 6

C.79 My family is a big help in controlling my diabetes

1 2 3 4 5 6

C.80 When my blood sugar is high it’s because I’ve made a mistake

1 2 3 4 5 6

C.81 Good control of my diabetes is a matter of luck

1 2 3 4 5 6

C.82 Complications are the result of my carelessness

1 2 3 4 5 6

C.83 I am responsible for looking after my diabetes

1 2 3 4 5 6

C.84 Other people have a big responsibility for looking after my diabetes

1 2 3 4 5 6

PART D: DIABETES BEHAVIORS6

The following questions ask about your diabetes self-care activities during the past 7 days. If you were sick during the past 7 days, please think back to the last 7 days that you were not sick.

6 Mulcahy K, Maryniuk M, Peeples M, Peyrot M, Tomky D, Weaver T, et al.

Diabetes self-management education core outcomes measures. Diabetes Educ. 2003;29(5):768-70.

301

Diet

D.1 How many of the last SEVEN DAYS have you followed a healthful eating plan?

0 1 2 3 4 5 6 7

D.2 On average, over the past month, how many DAYS PER WEEK have you followed your eating plan?

0 1 2 3 4 5 6 7

D.3 On how many of the last SEVEN DAYS did you eat five or more servings of fruits and vegetables?

0 1 2 3 4 5 6 7

D.4 On how many of the last SEVEN DAYS did you eat high fat foods such as red meat or full-fat dairy products?

0 1 2 3 4 5 6 7

D.5 On how many of the last SEVEN DAYS did you space carbohydrates evenly through the day?

0 1 2 3 4 5 6 7

Exercise

D.6 On how many of the last SEVEN DAYS did you participate in at least 30 minutes of physical activity? (Total minutes of continuous activity, including walking).

0 1 2 3 4 5 6 7

D.7 On how many of the last SEVEN DAYS did you participate in a specific exercise session (such as swimming, walking, biking) other than what you do around the house or as part of your work?

0 1 2 3 4 5 6 7

Blood sugar testing

D.8 On how many of the last SEVEN DAYS did you test your blood sugar?

0 1 2 3 4 5 6 7

D.9 On how many of the last SEVEN DAYS did you test your blood sugar the number of times recommended by your health care provider?

0 1 2 3 4 5 6 7

302

Medications

D.10 Has insulin injection been recommended to you?

YES No

D.10.1 If YES: On how many of the last SEVEN DAYS did you take your recommended insulin injections?

0 1 2 3 4 5 6 7

D.11 Have diabetes pills been recommended to you?

YES No

D.11.1 If YES: On how many of the last SEVEN DAYS did you take your recommended number of diabetes pills?

0 1 2 3 4 5 6 7

Foot care

D.12 On how many of the last SEVEN DAYS did you check your feet?

0 1 2 3 4 5 6 7

D.13 On how many of the last SEVEN DAYS did you inspect the inside of your shoes?

0 1 2 3 4 5 6 7

D.14 On how many of the last SEVEN DAYS did you wash your feet?

0 1 2 3 4 5 6 7

D.15 On how many of the last SEVEN DAYS did you soak your feet?

0 1 2 3 4 5 6 7

D.16 On how many of the last SEVEN DAYS did you dry between your toes after washing?

0 1 2 3 4 5 6 7

Smoking

D.17 Have you smoked a cigarette—even one puff—during the past SEVEN DAYS?

0 No 1 Yes

303

D.17.1 If Yes, how many cigarettes did you smoke on an average day?

Number of cigarettes:............................................

D.17.2 When did you last smoke a cigarette?

1 More than two years ago, or never smoked 2 One to two years ago 3 Four to twelve months ago 4 One to three months ago 5 Within the last month 6 Today

Problem solving

The next questions ask about which of the following diabetes issues are currently a problem for you? Tick the number that best describes your degree of difficulty. Please provide an answer for each question.

D.18 Feeling scared when you think about living with diabetes?

Not a problem

Minor problem

Moderate problem

Somewhat serious problem

Serious problem

0 1 2 3 4

D.19 Feeling depressed when you think about living with diabetes?

Not a problem

Minor problem

Moderate problem


Serious problem

0 1 2 3 4

D.20 Worrying about the future and the possibility of serious complications?

Not a problem Minor

problem Moderate problem


Serious problem

0 1 2 3 4

D.21 Feeling that diabetes is taking up too much of your mental and physical energy every day?

Not a problem Minor

problem Moderate problem


Serious problem

0 1 2 3 4

304

D.22 Coping with complications of diabetes?

Not a problem

Minor problem

Moderate problem


Serious problem

0 1 2 3 4

Coping

People differ in their thoughts and feelings about having diabetes. We would like to know how you feel about having diabetes. Therefore, please circle the answer to each question which is closest to the way you feel. Please give your honest feelings – we are interested in how you feel, not what your doctor or family may think.

D.23 How upsetting is having diabetes for you?

Not at all Slightly upsetting

Moderately upsetting

Very upsetting Extremely upsetting

1 2 3 4 5

D.24 How much control over your diabetes do you have?

None at all Slight

amount Moderate amount Large amount Total amount

1 2 3 4 5

D.25 How much uncertainty do you currently experience in your life as a result of being diabetic?

None at all Slight

amount Moderate amount Large amount

Extremely large amount

1 2 3 4 5

D.26 How likely is your diabetes to worsen over the next several years? (Try to give an estimate based on your personal feeling rather than based on a rational judgment.)

Not likely at all

Slightly likely

Moderately likely Very likely Extremely likely

1 2 3 4 5

D.27 Do you believe that achieving good diabetic control is due to your efforts as compared to factors which are beyond your control?

Totally because of

me

Mostly because

of me

Partly because of me and partly

because of other factors

Mostly because of other factors

Totally because of other factors

1 2 3 4 5

305

D.28 How effective are you in coping with your diabetes?

Not at all Slightly effective

Moderately effective Very effective Extremely effective

1 2 3 4 5

D.29 To what degree does your diabetes get in the way of your developing life goals?

None at all Slight

amount Moderate amount Large amount

Extremely large amount

1 2 3 4 5

PART E: HEALTH OUTCOMES

E.1 HbA1c value

.

Medication

The next question asks about your current diabetes medication.

E.2 Which of the following medications for your diabetes has your doctor [actually] prescribed? Please mark all that apply:

1 An insulin shot 1 or 2 times a day.

2 An insulin shot 3 or more times a day.

3 Diabetes pills to control my blood sugar level.

4 Other – please specify: .....................................................................................

5 I have been prescribed neither insulin nor pills for my diabetes.

306

Bodyweight

The next two questions deal with your bodyweight and Body Mass Index (BMI) (relation of body weight and body height).

E.3 How tall are you? (approximately)

…………………………………………….. cm

E.4 How much do you weigh? (approximately)

…………………………………………….. kg

General health and well-being7

The next 5 questions ask about your general health.

E.5 In general, would you say your health is:

Excellent Very good Good Fair Poor 1 2 3 4 5

E.6 I seem to get sick a little easier than other people

Definitely true Mostly true Don’t know Mostly false Definitely false 1 2 3 4 5

E.7 I am as healthy as anybody I know


E.8 I expect my health to get worse


E.9 My health is excellent


7 Röthlin FP, Jürgen M.; Ganahl, Kristin. . Protocol for a pre-post evaluation study

on the effectiveness of existing DSM programs. (Working paper, The diabetes literacy project. 2014.

307

Well-being

The next 5 questions ask about your well-being. Please indicate for each of the five statements, which is closest to how you have been feeling over the last two weeks.

E.10 I have felt cheerful and in good spirits

All of the time

Most of the time

More than half of the

time

Less than half of the time

Some of the time

At no time

5 4 3 2 1 0

E.11 I have felt calm and relaxed

All of the time

Most of the time


time


Some of the time

At no time

5 4 3 2 1 0

E.12 I have felt active and vigorous

All of the time

Most of the time


time


Some of the time

At no time

5 4 3 2 1 0

E.13 I woke up feeling fresh and rested

All of the time

Most of the time


time


Some of the time

At no time

5 4 3 2 1 0

E.14 My daily life has been filled with things that interest me

All of the time

Most of the time


time


Some of the time

At no time

5 4 3 2 1 0

309

APPENDIX D

INTERVIEW GUIDE: CARE-PLAN BOOKLET

AND MEDICAL CONSULTATION EVALUATION

PART A: FOR PATIENTS

Notes to the interviewer:

Make sure participant(s) have their booklets with them, as there may be

points where you or a participant may want to refer to a specific page in the

booklet.

Use probes only if the information or viewpoints on that specific topic has

not been spontaneously divulged in any of the participant(s)’ responses to

previous questions.

1. Icebreaker: Tell me a bit more about what you think of diabetes.

Probes:

- How long ago were you diagnosed with diabetes?

- What was your reaction when you heard your diagnosis?

- Do you have any children or grandchildren?

- Do you have any worries about diabetes?

2. Did you use the care-plan booklet?

Probes:

If Yes:

- How did your use it?

- Did you write any questions or advice from provider?

- Which part was most interesting to you?

- Which part did you like most?

- What did you not like about the whole intervention?

If No:

- What made you to not use the care-plan booklet?

- Do you think you can overcome these barriers?

3. Tell me something that you learnt from using the booklet?

310

Probes:

- While at home or during consultation

4. Did your health provider use the booklet with you during the medical

consultations?

Probes:

If Yes:

- How did it feel/ did you like discussion?

- Do you think you can continue doing it?

- What are the potential barriers that could stop you?

- What could make it easier?

If No:

- What do you think made the provider not to use the booklet?

- Do you think these barriers could be avoided?

5. Did you always bring the booklet for consultation?

Probes:

If Yes:

- What made it easy for you?

If No:

- What made you not to bring the booklet to consultations?

6. Did you use the booklet at home?

Probes:

If Yes:

- Did you share the booklet with anyone?

If No:,

- What made you not to use the booklet at home?

7. Was the booklet useful to you?

Probes:

If Yes:

- How was the booklet useful?

If No:

- How was the booklet not useful?

8. Tell me what you think about the booklet?

Probes:

- Colour

- Content

- Pictures

311

9. Do you think there is information that you would have liked to know

but was not covered? Please explain.

10. Was the booklet easy to use?

If Yes: How?

If No: How?

11. Have you received any of your annual check-ups?

If Yes: Which ones?

If No: Do you know when you will get them?

12. Tell me about the changes you have made in your lifestyle?

13. What advice would you give us if we were to develop another

booklet?

312

PART B: FOR HEALTH CARE PROVIDERS

Notes to the interviewer:

Make sure participant(s) have their booklets with them, as there may be

points where you or a participant may want to refer to a specific page in the

booklet.

Use probes only if the information or viewpoints on that specific topic has

not been spontaneously divulged in any of the participant(s)’ responses to

previous questions.

1. What do you think about using the booklet during consultations?

Probes:

- Was it easy?

- What made it easy

- What made it difficult?

2. Did you follow the guidelines of using the booklet?

Probes:

- What made it easy to follow guidelines

- What made it difficult

3. Was the booklet useful during consultation?

Probes:

- How was it useful?

- How was it not useful?

4. Did any of the patients forget their booklet at home?

Probes:

- Did you remind patients to produce the booklet?

- What do you think made them to forget?

5. Tell me about what you think can make the use of this booklet easier?

6. What do you think of the booklet?

Probes:

- The content

- The pictures

313

7. How much time do you spent with the patient when using the

booklet?

8. Do you think this booklet can be implemented on a larger scale?

9. Do you think we can add or remove some information?

10. What advice would you give us if we were to develop another

booklet?

11. Are you going to continue using the booklet?

Educational approaches and conditions for effective ...

Documents

Transcript of Educational approaches and conditions for effective ...