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Patient Education and Counseling 63 (2006) 279–291

Investigating the decision-making needs of HIV-positive women in

Africa using the Ottawa Decision-Support Framework:

Knowledge gaps and opportunities for intervention

Marion Doull a,*, Annette O’Connor b, M.J. Jacobsen b, Vivian Robinson a,Laura Cook c, Caroline Nyamai-Kisia d, Peter Tugwell a

a Centre for Global Health, Institute of Population Health, University of Ottawa, Ottawa, Canada K1N 6N5b University of Ottawa and Ottawa Health Research Institute, Ottawa, Canada

c Arthritis Community Research and Evaluation Unit, Division of Outcomes and Population Health,

Toronto Western Hospital Research Institute, Toronto, Canadad AfriAfya, Harnessing ICTs for Health, Nairobi, Kenya

Received 22 February 2006; received in revised form 22 June 2006; accepted 29 June 2006

Abstract

Objective: To examine HIV-positive women’s decision making in the context of pregnancy and HIV/AIDS and to explore interventions that

may enhance and develop women’s decision-making capacity in the sub-Saharan African context.

Methods: The Ottawa Decision-Support Framework was used to assemble evidence of women’s decision-making needs. Several electronic

databases were searched and an Internet search of the World Wide Web was conducted to search grey literature sources. An evidence-based

approach to assessing benefits, harms and current practices was employed.

Results: Several gaps in our knowledge about women’s decision making in the context of pregnancy and HIV were identified. The availability

of evidence varied for each decision; however, significant gaps included: evidence around testing for ones status, advanced directives for self

and child, disclosure (specifically, the impact of), others perceptions of antiretroviral use and data on termination of pregnancies.

Conclusion: Decision making as a concept was generally not addressed in the MTCT literature. Evidence regarding the perceptions of

women and others regarding the various decisions was often not available and subsequently an important aspect of MTCT interventions

neglected.

Practice implications: Incorporating a multi-disciplinary decision-support framework may prove useful to promote women’s autonomy and

involvement in MTCT-related decision making.

# 2006 Elsevier Ireland Ltd. All rights reserved.

Keywords: HIV/AIDS; Pregnancy; Decision making; Reproductive health

1. Introduction

Research has consistently shown that maternal health and

well-being are crucial to child health and survival in the

developing world. However, this knowledge has not resulted

in consistent and equitable treatment and care for HIV-

positive women. HIV-positive pregnant women are often

* Corresponding author. Tel.: +1 613 562 5800x2509;

fax: +1 613 562 5659.

E-mail address: mdoull@uottawa.ca (M. Doull).

0738-3991/$ – see front matter # 2006 Elsevier Ireland Ltd. All rights reserved

doi:10.1016/j.pec.2006.06.020

seen as mothers first rather than individuals in their own

right. This paper will examine HIV-positive women’s

decision making in the context of pregnancy and HIV/

AIDS and will explore interventions that may enhance and

develop women’s decision-making capacity in this arena. It

is believed that women themselves are an underused

resource in their care and treatment and that decision-

support interventions such as ‘health coaching’ may help to

capitalize on women’s unique knowledge and skills.

The Health Coach approach is a shared decision-making

style of counselling based on the Ottawa Decision-Support

.

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291280

Table 2

Ottawa Decision-Support Framework: determinants of decisions

Perceptions of decision

Knowledge

Expectations

Values

Decisional conflict

Stage of decision making

Predisposition

Perceptions of others

Perceptions of others’ opinions and practices

Support

Pressures

Roles in decision making

Framework that is designed to support individuals in making

decisions that are consistent with personal values [1B]. Early

feasibility studies in Chile have shown that this type of

decision-making counselling was effective in empowering

disadvantaged women to more effectively manage their

health and that of their families [2B]. This approach blends

concepts from decision support and peer-based counselling

by training community members as ‘health coaches’ who are

from the same cultural background as their clients. The

health coach is trained to help individuals build decision-

making skills, clarify values and build skills in accessing

appropriate health care.

Similar interventions, under the banners of ‘expert

patients’ and ‘self-management programs’ have been

successful in improving patient outcomes in most developed

countries [3B,4G,5G]. However, with the exception of a

recently published paper [6B], the idea of HIV-positive

women’s involvement in treatment and care models for the

prevention of MTCT and future self-care activities have not

been explored.

Antenatal care is often the entry point for women into the

health care system. In many countries, it is also the first time

a woman will undergo, or be offered, HIV testing if she has

not sought out testing previously. Therefore, pregnancy can

open a Pandora’s box of health issues for women,

particularly when HIV/AIDS is a concern. Should a woman

test positive for HIV during pregnancy she is faced with a

cascade of complex and sensitive decisions (Table 1). These

decisions depend on context and resources available, and

women often lack the information, support and resources to

make informed choices.

This cascade of decisions requires women to act as

autonomous decision makers in settings where women often

traditionally follow the advice of health care workers or

family members [7B]. Complicating this issue is the fact that

there may unclear evidence about the choice options and

outcomes and decisions may be highly dependent on values.

These factors increase the importance of a context specific

evidence-based decision-making framework for health care

workers or trained lay workers to use to coach women

through the decisions. Furthermore, the importance of

actively involving HIV-positive women in the decision-

making process, either as lay coaches/counsellors or

Table 1

Potential decision cascade (dependent on context and setting)

1. To test for HIV status?

2. To disclose status (and to whom)?

3. What type of HIV treatment (e.g. take antiretrovirals (ARVs)

to prevent transmission to child (PMTCT))?

4. To continue with pregnancy?

5. What method of delivery (e.g. caesarean, vaginal)?

6. Who to help with delivery (e.g. midwife, traditional birth

attendant, general practitioner)?

7. Where to deliver (home or hospital)?

8. To breast-feed or not?

9. How to take care of self and child in the future (advanced directives)?

patients, is highlighted by the complexity of pregnancy

and HIV-related decision making.

The Ottawa Decision-Support Framework provides a

framework to promote high-quality decisions, defined as

informed and consistent with individual values [8B]. The

decision-support approach depends on the amount and

quality of information about the likely harms and benefits of

options. Effective care decisions are those in which the

benefits are large compared to the harms, or best-practices

(e.g. testing for HIV status). Preference-sensitive decisions

are those that are dependent on patient values (e.g.

disclosure of HIV status to partners or family) and unknown

effectiveness decisions are those in which the evidence of

benefits and harms is inconclusive or varied. According to

the Ottawa Decision-Support Framework (ODSF) decision

making is also dependent on several interrelated factors or

determinants (Table 2). Furthermore, the ODSF asserts that

decision-support tools such as health coaching and

evidence-based decision aids are integral to the decision-

making process [9B].

This review maps nine decisions that pregnant women

face according to the Ottawa Decision-Support Framework

and looks specifically at the African context. We highlight

the evidence about alternatives, current decision-making

practices, and gaps. We then focus on perceptions of

pregnant women and perceptions of others to explain the

gaps. Throughout the paper, we highlight areas in which the

implementation of a decision-support intervention, such as

the use of decision aids and health coaching, may assist

Resources to make decision

Personal

Previous experience

Self-confidence

Motivation

Skill in decision making

External

Support (information, advice, emotional, instrumental, financial,

professional help) from social networks and agencies

Characteristics

Client: age, sex, marital status, education, occupation, culture, locale,

medical diagnosis and duration, health status

Practitioner: age, sex, education, specialty, culture,

practice locale, experience, counselling style

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291 281

women to make evidence-based decisions in the context of

MTCT and narrow the evidence-practice gap.

2. Methods

We searched the following electronic databases for

evidence about decision making by HIV-positive women and

MTCT interventions: The Cochrane Library, MEDLINE,

EMBASE, CINAHL, PubMED, AIDSLINE, PsycINFO,

Sociofile and SPECTR (Social, Psychological, Educational

and Criminological Trials Register). We also used Google to

search websites of the World Health Organization,

UNAIDS, UNICEF, The Centre for Disease Control/USAID

(United States) and other sites. The searches included both

textwords and MESH headings for knowledge, attitudes,

practices, needs and decision-making skills of women with

HIV.

We used elements of the Ottawa Decision-Support

Framework (ODSF) to identify evidence around the

cascade of nine decisions; barriers and facilitators to

making those decisions; decision determinants; efficacy of

interventions to support decision making. Citations in the

search strategy were screened for relevant articles based on

each decision. Studies were included if they provided

evidence regarding interventions for a decision or if they

provided information on any of the above listed decision

determinants. Efforts were made to include as many

studies as possible for each decision within the space

limitations. In order to develop a complete picture of the

evidence, we used data from both Africa and other

countries; we recognize that this may affect the reliability

of our conclusions. Non-governmental (NGO) reports and

project specific reports (white papers) were found using

the web search and were used fill evidence gaps in the

peer-reviewed scientific literature. Considering that in

some regions NGOs and United Nations affiliates are the

main providers of HIV/AIDS treatment, care and support

these ‘white papers’ are an essential and often unmatched

form of evidence.

Evidence from quantitative studies is graded to indicate

the strength of the study design and confidence in results.

We used the hierarchy of evidence and grading system

developed by the Ottawa Methods Group for clinical

practice guidelines and decision aids [10B]. Evidence is

ranked as platinum [P]: a systematic review with at least

two RCTs; gold [G]: one RCT with minimum sample size

of 50; silver [S]: systematic review or RCT that does not

meet criteria for platinum or gold; bronze [B]: evidence

from at least one case series without controls or evidence

from expert opinion [10B]. While not HIV-specific, the

methods developed by the Ottawa Methods Group were

used here as they are straight forward, user friendly and are

applicable across subject areas. This grading method was

used in order to give the reader an indication of the strength

of evidence for each decision; it was not used to screen

articles for inclusion; however, where platinum evidence

was available it was reported first (i.e. systematic reviews)

in an effort to provide a complete, yet brief picture.

Qualitative evidence [Q] was used to gather contextual

information. The qualitative evidence was not graded as the

use of grading systems and quality checklists for qualitative

studies is highly contested and their use may not accurately

reflect the quality of a paper in the ‘quantitative’ sense

[11B,12B].

3. Results

The results are structured according to the cascade of

decisions. Evidence on benefits and harms for all of the

decision interventions are summarized in Table 3. For

intervention effectiveness (benefits and harms) platinum

level evidence was used first if available [10B]. The

availability of evidence for each decision varied significantly

and thus general conclusions cannot be drawn. A summary

of decision-support intervention strategies to address each

decision can be found in Table 4.

3.1. To test for HIV status?

UNAIDS estimates that 9 out of 10 HIV-positive people

do not know their serostatus.

3.1.1. Benefits and harms

Voluntary counselling and testing (VCT) is considered

‘best practice’ and ‘effective care’ decision because of gold-

level evidence showing significant reduction in risk

behaviours with uncommon adverse effects [13G]. In an

RCT of 3000 women, negative life events, such as

estrangement from peers, employer discrimination and

family neglect were uncommon (1–4% overall) [14G] with

the exception of break-up of a sexual relationship. There

were no statistically significant differences between groups,

but rates of physical abuse (18% versus 5%) and break-up of

marriage (15% versus 3%) were higher with VCT.

3.1.2. Current practice

At United Nations MTCT pilot sites, 64–83% of women

consent to have an HIV test after counselling [15B]. Testing

acceptability among women is greater after pre-test

individual or group counselling, with test acceptance

ranging from 89 to 93% [16S].

3.1.3. Mother’s perception of decision

Reported reasons for test refusal in African antenatal care

settings include the prohibitive cost of tests, fear of AIDS,

concerns about confidentiality of test results, partner’s

reactions, belief that the benefits of knowing does not

outweigh the risks of subsequent disclosure; lack of medical

care for HIV-positive persons negates advantages of

knowing [17B,18Q]. Confidentiality concerns are not only

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291282

Table 3

Summary of MTCT decisions and evidence of efficacy of intervention options

Decision Type of decision Evidence of efficacy of interventions

Benefits Harms

Voluntary counselling

and testing (VCT)

Preference sensitive Known HIV status: implications

for risk reduction [13G]a

Unknown HIV statusc

Negative life events

uncommon (1–4% overall)

[14G]a

Disclosure of status Preference sensitive Health benefits, risk reduction,

care and support [23G,24S,20Q]a

Stigma and discrimination

[23G]b

Condom use is higher when both

individuals in a relationship disclose

their serostatus and when the male

partner is seronegative [20Q]a

Blame, anger, violence

[20Q,32B]b

Treatment Effective care ARV zidovudine reduced the risk of

MTCT significantly in comparison

to a placebo (RR 0.54,95% CI,

0.42–0.69) [33P]a

Long-term effects of

ARV use unknownc

Zidovudine reduces risk of infant

death within first year of life

(OR 0.57, 95%CI, 0.38–0.85) and

risk of maternal death (OR 0.32,

95%CI, 0.16–0.66) [33P]a

Increase in transmission

of drug resistant strains

of HIV [40B]b

ARV Nevirapine when compared

with Zidovudine showed significant

risk reduction of MTCT (0R 0.51,

95%CI, 0.33–0.79) [33P]a

Pregnancy termination Preference sensitive Removes risk of HIV transmission

to childa

Risks to physical and mental

health particularly in areas

where abortion practices are

illegal or unsafeb

Delivery method,

assistance and location

Effective care/

preference sensitive

Method: caesarean section effective

in reducing the risk of MTCT,

transmission is reduced from

10/100 to less than 9/100 [48P]a

Method: caesarean

section without resources

and trained staff can lead

to injury or deathb

Infant feeding Preference sensitive/

unknown effectiveness

Cumulative probability at 2 years

of HIV infection was 36.7% (CI,

29.4–44.0%) in breast-feeding

group vs. 20.5% (CI, 14.0–27.0%)

in formula-feeding group (1 RCT,

n = 401) [55G]c

Breast-feeding protects

maternal and child

health [61B]a

Options: breast-feeding

or formula-feeding

Exclusive breast-feeding reduces

transmission of HIV by 61% as

compared to mixed feeding [57S]c

Risk of HIV transmission

from breast milk 16.2%

compared to

formula-feeding [55G]c

Formula-feeding risk of

water-borne diseases

and malnutrition [61B]b

Advanced directives Preference sensitive Succession planning prevents

institutionalization of childrena

Stigma and discriminationb

Disclosure to children can strengthen

family bonds & promote precautionary

behaviours among children [68S]a

Evidence grades: B, bronze; S, silver; G, gold; P, platinum; Q, qualitative.a Scientific evidence of benefit.b Scientific evidence of harm.c Unclear whether benefits outweigh harms, conflicting evidence.

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291 283

Table 4

Decision-support intervention summary and MTCT decisions

Types of decisions

and links with MTCT

Common approaches

and interventions

Delivery strategies

and resources

Evaluation and

outcome measures

Effective care (benefits

large compared to harms)

Assess perceptions

of decision

Health coaching services

(in person, group,

telephone call centre)

Improved knowledge

Testing for status Assess decision-making needs

(resources, available support)

Online decision-support

tools (Ottawa Guide)

to capture process of

decision support

Positive attitudes

ARV treatment Provide decision support Library of decision aids

and interventions

Self-confidence/skills in

behaviour change

Facilitate progress in decision

making and implementation

Training programs

for coaches (professional

schools, high schools)

Satisfaction with process

Preference sensitive

(dependent on patient values)

Facilitate transfer of learning

to future decisions

Clear values and realistic

expectations

Disclosure Inform Increased uptake of health

interventions

Continuing with pregnancy Clarify values Continuance of chosen option

Advanced directives Improved health outcomes

and quality of life

Safety

Unknown effectiveness

(insufficient data to judge)

Reduced distress/regret

Method/location/

assistance with deliverya

Breast-feeding vs. formula-feedinga

a Some decisions are deemed to have insufficient evidence given the context. For example, we know that caesareans work in ideal settings but if this is not a

reality whether the risks outweigh the benefits is inconclusive.

about results of the test (i.e. that someone at the clinic will

divulge results) but also that the testing process is not

confidential (i.e. waiting in line at the clinic) [18Q]. Reasons

for supporting routine HIV screening of pregnant women

include protection of the unborn baby, initiation of early

treatment if positive, and protection of other patients and

health care workers [19Q].

3.1.4. Perceptions of others

Community members and fear of disclosure play a role in

deciding whether to accept and return for test results where

results are not immediately available after testing [20Q]. A

significant barrier to VCT in some settings is the attitudes

and beliefs of health care providers who often push for

testing regardless of the personal consequences to the

woman [21Q].

3.1.5. Opportunities for decision support

Test acceptance increases with counselling but other

factors such as health care worker beliefs and individual

values still dictate individual decision making. A structured

decision aid used with counselling would systematically

take women through each stage of the decision highlighting

pros and cons of options, values clarification and often

includes stories or vignettes about what others would do in

their situation, addressing many of the barriers to testing

outlined above [22B].

3.2. To disclose (and to whom)?

There is limited evidence of the impact of disclosure of

HIV status in Africa.

3.2.1. Benefits and harms

Disclosure of HIV status is associated with beneficial

health effects including increased support from health care

providers and risk reduction by the individual

[20Q,23G,24S]. Harms include the possibility of stigmati-

zation and discrimination [14G,25Q]. However, commu-

nity-based services may be able to mitigate these negative

reactions [26Q].

3.2.2. Current practice

Test outcomes significantly affect disclosure patterns—

52% of those testing HIV positive disclosed their status

versus 79% who tested negative [23G]. Some women did not

disclose their HIV status to health care workers to avoid

discrimination (4/59) and about one-quarter reported

receiving substandard care because of their status or being

scolded by nurses for becoming pregnant [25B]. Only 32%

of women in Burkina Faso informed their partners of their

HIV status [27B], while in Tanzania 22% of women did

[28G]. In Rwanda, 85% of HIV-positive women stated that

they had informed their partners of testing but only 51%

intended to inform them of the results [29S]. Private

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291284

disclosure (to close family or friends) does occur but public

disclosure is very rare [18Q].

3.2.3. Mother’s perception of decision

Reasons for non-disclosure were similar across studies

and included fear of social stigma, divorce, accusations of

infidelity, family conflict, forced eviction from home,

rejection and abandonment [27B,28G,29S,30S].

3.2.4. Perceptions of others

Community members may assume the HIV-positive

status of women if their husbands died of an AIDS-related

illness [31Q]. A study in Burkina Faso found that informed

partners reacted with indifference (72%) or had an

encouraging attitude (24%) and no cases of domestic

violence were reported [27B]. In Rwanda, 62% of women

reported a positive reaction from their partners, 17%

reported blame or anger, and 21% reported fear, disbelief

or shock [20Q]. A study in Burkina Faso revealed that 18%

of HIV-positive women disclosed to their husbands and the

only reason women refused to disclose was fear of domestic

violence [32B]. In this study, impact of disclosure on

relations with primary male partners was limited: 2/54

women separated from their husbands after disclosure; but

most remained together and practiced more abstinence and

condom use [32B].

3.2.5. Opportunities for decision support

Decision support is effective in helping individuals to

clarify their values and also to obtain realistic expecta-

tions of the decision outcomes [22B]. This aspect of

decision support may be particularly useful given the

evidence above that many women fear adverse outcomes

of disclosure but less report experiencing adverse

outcomes.

3.3. What type of treatment (i.e. antiretrovirals)?

The evidence below is only for antiretrovirals (ARVs)

administered in labour or during pregnancy to prevent

MTCT. In the developing world, the combination ARV

regimen for treatment of HIV for both the mother and child,

if infected, has been unfortunately rarely available, primarily

due to prohibitive cost. Recently, efforts have been initiated

to expand access to ARV treatment.

3.3.1. Benefits and harms

A Cochrane systematic review demonstrated that both

short-course zidovudine and single-dose nevirapine are

effective for reducing MTCT [33P]. Short-course zido-

vudine reduced the relative risk of MTCT by 54% versus

placebo; an absolute reduction of 12 out of 100 children

compared to 24 children infected without treatment [33P].

Zidovudine also reduced the risk of both infant and

maternal death [33P]. A single dose of Nevirapine at the

onset of labour reduced MTCT by half (OR 0.51)

compared to intra and postpartum doses of Zidov-

udine [33P]. Short-course combination therapies of

zidovudine and lamivudine (3TC) were also effective in

reducing the risk of MTCT when administered during the

antenatal and intrapartum period or during the intrapartum

and postpartum period, when compared with a placebo

[33P].

Evidence about long-term effects of ARV use for the

prevention of MTCT is lacking. There is evidence of

nevirapine resistance both among women and children,

which could lead to limited future treatment options

[34S,35G]. A 2-year study of 2414 uninfected children

exposed to ARV demonstrated increased early anaemia, but

no other adverse effects [36B]. Potential side-effects of

zidovudine for the mother include headache, gastrointestinal

intolerance and bone marrow toxicity (anaemia), all of

which subside with use [37B]. No major adverse effects for

the newborn have been reported, although long-term follow-

up of children exposed to zidovudine in utero are still needed

[37B].

3.3.2. Current practice

Administration of ARV treatment varies widely

according to setting. In studies where an ARV dose

was planned directly before labour, 40% of women did not

reach the clinic to give birth [38G]. Evaluation of the

United Nations MTCT pilot projects found that 40–60%

of women who test positive at clinic sites received ARVs

[15B]. Reasons why women often do not receive the full

course of ARVs vary but may include timing of arrival at

health facility, delivery at home, lack of disclosure to

labour ward staff, partner opposition, concerns about

taking drugs during pregnancy, and incomplete adherence

[15B,39B].

3.3.3. Mother’s perceptions

Factors that influence women’s decisions about ARV

treatment include: perceptions of, relationships with and

trust in, health care providers, beliefs about ARVs including

efficacy, side-effects and perceptions of peers and family

(particularly mothers) and other HIV-positive women [40Q].

Pregnant HIV-positive women were concerned they would

be denied other health services if they refused ARV

treatment [40Q].

3.3.4. Perceptions of others

Social factors may affect the administration of intra-

partum doses. One study found that women were reluctant to

receive ARVs in the delivery room when family members

were present for fear of disclosing their status [41G].

3.3.5. Opportunities for decision support

ARV treatment is considered an effective care decision

(benefits are large compared to harms) and in this case,

the role of a health coach is mainly to inform. Key

outcomes of decision support in this case would be

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291 285

reduced decisional conflict and improved knowledge, both

of which have been shown to significantly improve via the

use of decision aids [42P]. Decision aids have also been

shown in some cases to increase the uptake of health

interventions but this has not been tested with ARV-

related decisions [42P].

3.4. To continue with pregnancy?

Pregnancy termination in response to an HIV-positive

diagnosis is an unlikely choice in Africa, due to moral,

social, cultural, legal and economic reasons.

3.4.1. Benefits and harms

Pregnancy termination removes the risk of HIV

transmission to the child. For an HIV-infected woman, it

also eliminates the personal, emotional, social and financial

burden of caring for a child. Potential harms include risk of

death and other medical complications due to unsafe

abortion procedures, loss of future financial security, loss of

family, and risk of poor emotional and mental health. Over

4 million unsafe abortions occur each year in Africa.

However, this figure does not distinguish between HIV-

positive and HIV-negative women [43B].

3.4.2. Current practice

Access to safe legal abortion is severely restricted in

Africa, with the exception of some countries such as South

Africa.

3.4.3. Mother’s perceptions

Factors influencing reproductive decision making

include personal health, desire for children, religious

beliefs, beliefs about abortion, knowing children born to

HIV-infected women who were HIV negative, knowledge

and beliefs about HIV, previous childbearing experience,

attitudes of families, partners and health care providers,

access to health care, ethnicity, socioeconomic status,

concerns about child and child’s future, drug use behaviours

and being in an abusive relationship [44B,45S,46Q]. A

survey of 209 HIV-positive women in Zimbabwe found that

nearly two-thirds would have had an abortion if it was

available, primarily because the pregnancy was unplanned

or unwanted [25B].

3.4.4. Opportunities for decision support

Whether to continue with one’s pregnancy is a

preference-sensitive decision, one that is highly dependent

on values. This decision is also highly dependent on

context and thus may not be a choice in some settings. A

health coach’s role in this case would be to work through

the decision help women clarify their values by describing

the physical, social and emotional consequences of the

options, describe how others have decided and asking

women to explicitly rank those benefits/harms they most

value [47B]. Explicit values clarification helps to improve

agreement between values and the actual choice made

[47B].

3.5. Method, location and assistance with delivery

How and where a woman gives birth is an extremely

context specific decision. In many settings women may not

have the choice or resources to make a decision regarding

the method, location or type of person providing assistance

during the delivery.

3.5.1. Benefits and harms of caesarean

A Cochrane systematic review found that caesarean

section delivery is very effective in preventing MTCT.

Without caesarean, 10 out of 100 children were infected,

with caesarean, 9 fewer were infected out of 100 [48P]. In

many African settings, there is little choice in who provides

care, and there is a lack of evidence of birth outcomes with

different health care providers (e.g. midwife, traditional

birth attendant (TBA), general practitioner).

3.5.2. Current practice

A study in rural Malawi revealed that 95% of women

(HIV-positive and negative) deliver vaginally [49B]. Women

may not seek or be able to seek delivery from trained

individuals [49B,50B,51B]. For example, in Malawi,

approximately 36% of deliveries were assisted by an

untrained individual, 35% by a TBA, 26% by a medical

professional and 3% delivered alone [49B]. In most African

hospitals, HIV is not considered an indication for caesarean

due to limited resources and trained individuals.

3.5.3. Location of delivery

Location of delivery is a major reason why women do not

undergo caesarean sections when needed [49B,50B,52Q].

For example, in rural Malawi, 71% of women deliver at

home or at a TBA facility, 17% at a health center and 11% in

a hospital [49B].

3.5.4. Perceptions of others

Research from Zimbabwe reports that most women who

gave birth while HIV positive were treated well by health

care providers at formal health care facilities; however, 25%

(n = 209) felt that they did not receive proper care because of

their HIV status [25B].

3.5.5. Opportunities for decision support

The provision of decision support via evidence-based

decision aids would be difficult in this case because there is a

lack of context specific data on outcomes. In order to assist

decision-making health coaches need to be able to provide

evidence-based information on the pros and cons of decision

options [22B]. More research is needed to determine the

comparability of outcomes (i.e. post-caesarean section) by

place of delivery (rural, urban) and by method of assistance

(physician, nurse, TBA).

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291286

3.6. To breast-feed or not?

The decision to breast-feed or formula-feed is highly

preference-sensitive (dependent on values), and also

depends on several health system, individual and environ-

mental factors.

3.6.1. Benefits and harms of exclusive formula-feeding

and exclusive breast-feeding

Breast-feeding protects the child against childhood

diseases, malnutrition and water-borne diseases and has

beneficial health effects for mothers including reduction in

breast cancer, ovarian cancer, and lactational amenorrhea

that promotes greater birth spacing [53B,54B]. However,

breast-feeding has been shown to result in 16.2% higher

post-natal transmission of HIV than formula-feeding in a

large RCT in Africa [55G,56G]. Over 75% of the HIV

transmission occurred in the first 6 months of breast-feeding.

However, breast-feeding is superior to mixed feeding

(breast-feeding mixed with other liquids, solids and

formula). Exclusive breast-feeding reduced post-natal

transmission of HIV by 61% compared to mixed feeding

and this protective effect was still significant 18 months

post-delivery [57S]. Mixed feeding (breast-feeding mixed

with other liquids, solids or formulas) is more harmful than

exclusive formula-feeding, resulting in a four-fold increase

in post-natal transmission of HIVand a three-fold increase in

HIV transmission plus death [57S].

The increased risk of transmission with mixed feeding

may be due to reduced immune benefits from the minimal

breast milk that infants ingest as well as introduction of other

foods to an immature system which may cause damage to

the mucosal linings of the gut allowing the virus easier

passage [58S,59B]. However, the evidence on reasons for

this increased risk is not conclusive.

Breast-feeding may result in higher maternal mortality

for women with HIV, but results are conflicting. For

example, one study found 11% mortality with breast-feeding

versus 4% with formula-feeding [56G] an another study

found no difference in maternal mortality (0.5% versus 2%

mortality, for breast-feeding and formula-feeding, respec-

tively) [60B]. Formula-feeding may be harmful in resource

poor settings where safe water and adequate formula may

not be available.

3.6.2. Current practice

The WHO and UNAIDS now recommend that for HIV-

positive women, breast-feeding should be avoided when

safe, acceptable, feasible and sustainable alternate feeding

sources are available [61B]. If these conditions cannot be

met, exclusive breast-feeding is recommended and should be

discontinued as soon as possible given local and personal

circumstances [61B].

Despite these recommendations, common practice is

mixed feeding. Many women in Africa choose to breast-feed

despite counselling recommending otherwise because of the

prohibitive cost of alternatives, fear of disclosing HIV status,

and awareness of risks of not breast-feeding for their child

given their setting [7B,62S]. Rates of breast-feeding

recorded in several antiretroviral RCTs range from 53 to

97% of women for a median time of 7 weeks to 19 months

[38G,63G,64G].

3.6.3. Mother’s perceptions

Women have a misconception that breast milk alone is

not enough for healthy child development and there are

cultural taboos about colostrum and early milk production in

some settings [7B]. Formula-feeding alone is also not

considered healthy [7B].

3.6.4. Perceptions of others

In many settings, breast-feeding is linked to social and

cultural norms and expectations. Women report that they

may be abused, ridiculed or interpreted as selfish or

promiscuous; that partners refused money to buy formula;

and that their family would disapprove [7B,65Q].

Some health care workers are unsupportive of formula-

feeding. A study in South Africa found that nurses insisted

women breast-feed after delivery, regardless of personal

choice, and they did not counsel women about potential risks

of breast-feeding if HIV positive [65B]. Research from

Tanzania found that counsellors often received contradictory

information about breast-feeding and transferred this

uncertainty to their clients [21Q].

Research in Zambia and Kenya found that counsellors

there provide appropriate information but fail to account for

women’s social and economic circumstances when making

feeding recommendations [62S].

3.6.5. Opportunities for decision support

A decision-support strategy may assist in realigning

expectations regarding infant feeding options and clarifying

evidence and misinformation. However, this decision

illustrates the vital importance of context specific deci-

sion-support tools that account for cultural beliefs and social

circumstances. For example, the best evidence may point to

formula-feeding as the option with the most ‘pros’ but this

may not be the case in places where access to clean water is

not guaranteed. Furthermore, the role of decision support is

to assist people in making the choice that is most consistent

with their values, which will vary significantly by setting.

3.7. Advanced directives for self and child

There is little evidence about these practices.

3.7.1. Benefits and harms

Formal succession planning including identification of a

primary caregiver is well accepted by children (over two-

thirds in one study) [66S,67B]. Planned succession prevents

institutionalization of children. Children raised in institu-

tions reach lower levels of education and lack social and

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291 287

cultural skills [68B]. Making arrangements for future care

involves testing and disclosure of status to children and

relatives (see decision #2). Disclosure can strengthen family

bonds and can promote HIV/AIDS precautionary behaviours

among children [69S].

3.7.2. Current practice

Less than half of women in Uganda disclose their HIV

status to their children [66S]. Also, in Uganda, 53% of

parents had appointed a guardian for their children but 53%

had not disclosed their status [69S]. The rights of orphaned

children to familial inheritance is a significant concern

among HIV-positive parents; however, only 10% of parents

had a written will [66S].

Prevention of unintended pregnancies among HIV-

positive women is a key WHO strategy, yet a review

suggests that MTCT and family planning programs are not

well integrated [17B,70B]. Research from Zimbabwe

revealed a shift in contraception use after a HIV-positive

diagnosis [25B]. Zambian data reveal that at six months

postpartum, contraception use was similar for HIV-positive

and negative women, with the exception of condom use

occurring more often by HIV-positive women [71B].

However, many HIV-positive women with regular partners

reported using no family planning methods [71B].

3.7.3. Mothers perceptions

Family planning is a key aspect of self-care for HIV-

positive women. Desire for children varies considerably

amongst HIV-positive women and is often dependent on the

number of children they already have, whether they are in a

new relationship, desires of their partners and/or their

previous experiences with child birth (i.e. miscarriages, still

births) [25B]. Despite knowledge that pregnancy could

seriously harm their health, many thought the benefits

outweighed the risks [25B].

3.7.4. Opportunities for decision support

Presently, advanced directives for both mother and family

are a neglected aspect of MTCT-related programming.

Integrating decision-support interventions into the con-

tinuum of MTCT-related decisions offers an opportunity to

encourage families to consider advance planning more

systemically.

4. Discussion and conclusion

4.1. Discussion

We have identified several gaps in our knowledge about

women’s decision making in the context of pregnancy and

HIV as well as an urgent need for interventions to promote

women’s autonomy and involvement in decision making for

their health. Research has shown clinically important

benefits of nevirapine, highly active antiretroviral therapy

(HAART) and the entire complement of MTCT-prevention

interventions. MTCT programs could prevent 50% of infant

HIV infections; combination ARV treatment as advocated in

the MTCT Plus Initiative could prevent over 90% of infant

HIV infections [72B]. However, implementing these

strategies with demonstrated effectiveness has been proble-

matic. This review addresses an important aspect of

intervention implementation—patient decision making in

the context of pregnancy and HIV/AIDS. The perspective of

HIV-positive women is missing in the HIV/AIDS literature,

particularly their views on decision-making and the difficult

choices they face when pregnant. ‘Expert-patients’, those

who are actively involved in their medical decision-making

and are equipped with the tools to make such decisions are

on the rise in most developed countries around the world.

Exploration of these topics in the context of HIV/AIDS in

the developing world has not been examined. Maternal to

child transmission of the HIV virus is preventable if a series

of clinical, social and personal decisions are made and most

importantly, if resources are made available to facilitate

these decisions.

4.2. Conclusion

Decision making as a concept was generally not

addressed in the MTCT literature. Evidence about the

perceptions of women and others regarding the decisions

was often not available and subsequently an important

aspect of MTCT interventions neglected. Essentially, the

context within which health care workers must advise

women, and women must act on their advice, is ignored.

This review has also outlined areas where decision-support

activities may be beneficial to improve self-care practices

and appropriate utilization of resources. Incorporating a

multi-disciplinary decision-support framework may prove

useful in this context to empower women to become

effective health decision-makers.

4.3. Practice implications

One key strategy to improving uptake and implementa-

tion of MTCT and MTCT Plus programs is improved

counselling strategies [39B,73B]. The implementation of the

Thai national program for the prevention of MTCT

highlights counselling strategies as central and in need of

ongoing attention and improvement [73B]. Moreover, a

report on the implementation of MTCT prevention programs

at 18 sites in South Africa calls for increased training of ‘lay’

counsellors as a key ingredient for program success [67B].

Counsellors provide the first point of access to information

and resources for women considering HIV testing and are

essential post-testing, whether one’s result is positive or

negative. Counselling strategies need to incorporate broader

issues that go beyond making decisions about HIV testing to

include empowerment, ongoing psychological and emo-

tional support and access to resources.

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291288

We have illustrated here the potential role that a Health

Coach approach—one that advocates shared counselling and

employs lay or peer counsellors can play in the care and

treatment of HIV-positive women. Health coaching makes a

unique contribution as it is distinct from traditional

counselling because coaches build their clients’ skills in

decision making, which can be used in the future, whereas

counsellors may encourage dependency if they do not build

skills. Furthermore, coaches are trained to be neutral and

Fig. 1. Example data summary form for the Ottawa De

provide evidence and support versus advice, which is

emphasized in traditional counselling. An example of a

decision-support worksheet used by a health coach reveals

this personalization (see Fig. 1).

Health coaching supports women to make their own

choices that are consistent with their values and beliefs.

This process also has the supplementary benefit of

improving decision-making ability for subsequent deci-

sion making, a skill that may be essential given the

cision-Support Guide: Health Coach Worksheet.

M. Doull et al. / Patient Education and Counseling 63 (2006) 279–291 289

cascade of decisions involved in MTCT (see Table 4 for a

summary of MTCT decisions and decision-support

intervention approaches). Finally, health coaches tailor

decision support to the specific circumstances of each

client with the intention of improving the relevance of the

options, which is of particular importance to women in

resource poor settings.

The Health Coach Program is an attempt to intervene in

fairly complex clinical decisions at a level that is grounded

in individual experience and context. Therefore, the Health

Coach Program may be effective in improving decision-

making in contexts where this is not a traditional practice.

As illustrated in this review, the role of HIV-positive women

as decision makers invested in their own health and well-

being is not well addressed in the MTCT intervention

literature. Further research examining the impact of

involving HIV-positive women as decision makers is

needed and may provide important insights into MTCT

intervention efforts.

Acknowledgements

The authors would like to acknowledge the contributions

of Dr. Wafaa El-Sadr and Tanya Doherty for their insightful

and informative comments on this paper.

Funding: Marion Doull is funded by the Institute of

Gender and Health, Canadian Institutes for Health Research

Doctoral Scholarship Award. Annette O’Connor is funded

by the Canada Research Chair in Health Care Consumer

Decision Support and Peter Tugwell by the Canada Research

Chair on Health Equity.

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