ORIGINAL ARTICLE

Person-Centered Web Support to Womenwith Type 1 Diabetes in Pregnancy and EarlyMotherhood—The Development Process

Marie Berg, RN, RM, PhD, MPH, MNSc,1 Annsofie Adolfsson, RN, RM, PhD,2

Agneta Ranerup, PhD,3 and Carina Sparud-Lundin, RN, PhD,1

for the University of Gothenburg Centre for Person-Centred Care

Abstract

Background: Pregnancy and early motherhood are extraordinarily demanding periods for women with type 1 diabetes, whotherefore need optimal support. This article describes the process of developing person-centered Web-based support forwomen with type 1 diabetes during the period of pregnancy through early motherhood. Important aspects of person-centeredness are a broader scope of medicine, viewing the patient as a person, shared decision-making to accomplish atherapeutic alliance, and the role of documentation.Materials and Methods: A participatory design was used in the development process to capture the target group’sknowledge, experiences, and needs, and a systematic process map for Web-based support was used to describe the process.Results: Content and layout in the Web support were developed collaboratively by project managers, advisory and scientificreference groups, technical producers, and representatives for the target group. Based on needs assessment and evidencesynthesis, three main components of complementary Web-based support were identified: (1) specific information aboutpregnancy, childbirth, and early motherhood in relation to type 1 diabetes; (2) a self-care diary, including a device fordocumenting and evaluating blood glucose levels, insulin doses, food intake, physical activities, and overall well-being; and(3) a forum for communication between women with type 1 diabetes in the childbearing period.Conclusions: Using a perspective of person-centered care, a participatory design and the process map were fruitful fordeveloping person-centered Web support for self-care and self-learning. The developed Web support product will be eval-uated in a randomized controlled trial and further developed based on this result.

Introduction

This article presents and discusses experiences of de-veloping person-centered Web support for women with

type 1 diabetes in pregnancy and early motherhood, periodscharacterized by increased risk of ill health in both the womanand the fetus/child. The aim of health care provided to thesewomen is to ensure outcomes equal to childbearing withoutmaternal diabetes.1 Diabetes is unique in that much of theday-to-day responsibility for care rests within the individualsthemselves.2 Due to demanding requirements during theperiod of pregnancy and early motherhood,3–7 there is a needfor extended professional care, education, and counselingregarding self-care, provided in ways that move beyond theillness of diabetes and focus on the person.

Five core areas have been identified in person-centeredcare: applying a broader scope of medicine, approaching thepatient as a person, developing a therapeutic alliance, ac-complishing shared decision-making, and expressing this indocumentation.8 Incorporating these core areas in care andsupport to women with type 1 diabetes in the episode ofpregnancy, childbirth, and early motherhood is assumed toempower them to handle the illness in daily life and to ensurea secure transition to motherhood.

Based on indications in research on other patient groups,9–11

we believe that Web support, including possibilities fordocumentation and shared decision-making as a comple-ment to usual healthcare organizational arrangements, maystrengthen self-management capabilities. This could lead toimproved behavioral change outcomes and thus improved

1Institute of Health and Care Science, Sahlgrenska Academy, Gothenburg, Sweden.2School of Health and Medical Sciences, Orebro University, Sweden.3Department of Applied Information Technology, University of Gothenburg, Gothenburg, Sweden.

DIABETES TECHNOLOGY & THERAPEUTICSVolume 15, Number 1, 2013ª Mary Ann Liebert, Inc.DOI: 10.1089/dia.2012.0217

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health outcomes. The Internet is increasingly used in relationto diabetes2 and to pregnancy and childbirth.12 Use of Internetcommunication can among young women with type 1 dia-betes enhance their sense of autonomy and be a way ofmanaging the transition to motherhood.13 To our knowledgethe use of person-centered Web-based support has not yetbeen studied in relation to type 1 diabetes and childbearing.In summary, there is a need to develop person-centeredmodels of care for women with type 1 diabetes in relation topregnancy and childbirth, and it is suggested that directedWeb-based support promotes self-care. In response to thesehypotheses, the aim of this article is to describe the process ofdeveloping person-centered Web support for women withtype 1 diabetes during the period of pregnancy through earlymotherhood.

Materials and Methods

Design and process framework

A mapping exercise was performed of existing Web sites inSweden for women with diabetes with the focus on issuesaround pregnancy, childbirth, and early motherhood. Besidesstatic but insufficient information, no integral Web supportfor this target group was identified, either on ‘‘diabetes’’ Webpages or on ‘‘parent’’ Web sites. The only similar nationalproduct was a Web prototype supporting childhood chronicdisease management.9

A research project, MODIAB-web (MOtherhood andDIABetes–web support), was established to develop and im-plement person-centered Web-based support and to test andevaluate it scientifically in a randomized controlled study. Inorder to enroll participants in the development process, ap-proval was obtained from the Regional Ethics Board (protocolnumber 659-09).

We used a participatory design approach to develop theWeb prototype. Participatory design is a research approachwith its own ethics and flexible methods including threecentral parts: initial exploration of work, discovery process,and prototyping to capture a target group’s knowledge, ex-periences, and needs and to involve users in the design pro-cess.14 Deep commitments to democracy, including opennessto contradictions and discussions of values in design andimagined futures, are crucial.15

The development process was inspired by the systematictwo-phase process map for systems development of Web-based support suggested by Elwyn et al.16 in a scientific articlepublished just after the process had started. The process mapproposes key categories of participants who should be al-lowed to give input to and be a part of the developmentprocess: project managers, advisory and scientific referencegroups, technical producers, and, certainly not least, stake-holders. Two general principles should guide a systematicprocess framework. First, the content specification phase in-cludes needs assessment, evidence synthesis, and consensuson evidence. Second, the design phase includes storyboard,sandpit testing, usability testing, and field testing.16

Setting and procedure

Initially, the Web-based support was developed for wom-en with type 1 diabetes who were connected to one univer-sity hospital or one county hospital in the western part of

Sweden. As suggested,16 we identified key participants inthe developmental process: researchers, mothers with type 1diabetes, healthcare professionals representing differentspecializations in both diabetes and perinatal care, and Webdesigners. We conducted a Web-based survey and held di-alogues with professionals and mothers who had type 1 di-abetes and had recently experienced childbearing. We alsoperformed iterative text formatting and reviewing. An on-line project platform was established that included projectprotocols of activities with planning, implementation, andevaluation. The whole process took 15 months from the firstmeeting of the research group until the Web site and a sub-sequent adaptation to both computer and smartphonetechnology was completed.

Results

Key participants

The Project Management Group with executive controlover the project involved one scientific leader (M.B.) and twoproject leaders, one for each hospital (C.L.S. and A.A.). As theidea and structure of the Web-based support was developed,different groups were consulted to provide expertise; theseincluded both professionals and patient representatives.Details on these experts are given in Figure 1.

During the development phase, experts in the ScientificReference Group were repeatedly consulted in relation toforming a main research project plan, discussing the Web siteprototype, reviewing the content of information, and assess-ing the intervention as a whole. The Advisory Group pro-vided input on dissemination strategies and advice aboutcontent, structure, and usability, while the Stakeholder Con-sultation Group contributed feedback on different versions ofthe Web site prototype. A Technical Production Group wasestablished by a contracted company; their contract alsoclarified that the Project Management Group was the ownerof the intellectual property (i.e., the Web site prototype as awhole). Later in the development process, the Technical Pro-duction Group disseminated strategies and gave advice aboutcontent, structure, and applicability.

Content specification phase

Step 1: Needs assessment. Needs of the target group—women with type 1 diabetes in the period of pregnancythrough early motherhood, including breastfeeding—wereidentified in both our own3,6,7,17–19 and additional interna-tional research publications.4,5,20–26 An example of such anidentified need was the women’s call for sharing commonexperiences with others in similar situations, a need that couldnot be met within the healthcare setting.

Step 2: Evidence synthesis. According to Elwyn et al.,16

evidence should be synthesized in order to provide the corecontent for Web-based interventions. The identified scientificliterature in Step 1 concluded that the period of pregnancythrough early motherhood is challenging and demanding forwomen with chronic diabetes. There are increased risks forpreeclampsia, malformations, fetal asphyxia, cesarean sectionand instrumental vaginal birth, perinatal mortality, and neo-natal complications.27,28 The most important factor for opti-mizing chances of having a healthy child is maintainingmaternal normoglycemia 24 h/day during pregnancy.3,6,17,27

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Hypoglycemic episodes are frequent, and the body is expe-rienced as changed and unpredictable, especially during thefirst trimester, probably related to lower blood glucose levelsand to changes in hormonal secretion.17,23,29 During a de-manding pregnancy, feelings of stress, worry, pressure, andinsufficiency are central and are combined with insecurity andunpredictability.17,21,22 Pregnancy and childbirth involve ex-tensive health care, but the mothers have experienced it asmainly focusing on fetal and neonatal health and not on theirown well-being.6 The duration of breastfeeding is shorterbecause of several aggravating circumstances.18,24–26

In Sweden there is a gap in organizational arrangementsafter childbirth, in that the mothers with diabetes are left inbetween maternity care and diabetes care. This makes theirtransition to motherhood challenging, as they try to structurea daily routine that includes caring for the newborn, estab-lishing breastfeeding, and at the same time managing fluc-tuating blood glucose levels and adapting to lower insulindoses.7 From the Internet, these mothers during the child-bearing period need specific information related to havingdiabetes.19 They also need peer support, including emo-tional and confirmative support, from other mothers withdiabetes.7,19,30

Step 3: Consensus on evidence. The synthesized scien-tific evidence identified three main components of comple-mentary Web-based support to the target group:

� Specific information about pregnancy, childbirth, andearly motherhood in relation to type 1 diabetes

� A self-care diary including a device for documentingand evaluating blood glucose levels, insulin doses, foodintake, physical activities, and overall well-being

� A forum for peer support through communication withother women with type 1 diabetes in the childbearingperiod.

Design phase

The creative design phase started with a half-day work-shop, conducted in order to create a formal description of howthe suggested three components, meeting the needs of thetarget group (storyboard), could be transformed into an op-erational and hosted Web site. A specification document wasformulated listing requirements for site structure, layout,design, and content based on presumptive components in thesuggested Web site. After evaluation of several offers basedon the specification document, a contractual arrangement wassettled with one company. The contract covered the cost andthe specification details, the timetable, and Web hosting andsupport services. Next was the sandpit testing phase, whichincluded several intensive discussions with stakeholders andthe scientific group, where free thinking was encouraged inorder to uncover innovative solutions. In this phase, a pro-totype structure was transformed to a Web site with the three

FIG. 1. Key participants and types of expertise.

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main components: information specific to diabetes and child-bearing; a self-care diary with documentation and visualiza-tion of measures; and a forum for peer support.

The next step in the design phase was usability testing bythe Advisory Group. The experienced mothers tested andevaluated the prototype,31 and the midwives specialized indiabetes care assessed it from a professional point of view.Examples of their opinions on the product under develop-ment are outlined in Figure 2.

After several revisions of layout and design of the maincomponents of the Web site, a final prototype was establishedin a last field-testing phase. An overview, taken from one ofthe pages on the Web site, is shown in Figure 3.

Discussion and Conclusions

This healthcare program of person-centered Web-basedsupport, including specific information, a self-care diary, anda forum for peer support, has been developed to bridge thegap between healthcare organizations and to support self-management for women with diabetes during the period ofpregnancy through early motherhood.

The collaboration between researchers and key stakehold-ers, including the target group and the healthcare specialists,was an important but also time-consuming process. The

perspective of person-centered care helped us apply a broaderscope involving the patient as a person in both the process andthe final product. The product’s intention is to assist shareddecision-making, building on a therapeutic alliance betweenthe mother with diabetes and the healthcare providers, and onthe woman’s documentation.8 Both the participatory designfocusing on the person as a center of activity in the develop-ment process and, we believe, the product as such (Fig. 3)will strengthen the individual’s self-care ability by promot-ing decision-making in daily life.10,11 The diverse interactionwith representatives from the target group—through focusgroups,31 individual contacts, and Web-based survey19—wasnecessary and fruitful. In a twofold way, it was also in linewith person-centeredness. Involving patients and caregiversin the development as well as in the provision of support (forexample, the peer support forum) also enhances a therapeuticalliance and is consistent with the participatory design ap-proach.14 Contributing to previous research with the intentionto strengthen the unique patient with diabetes through vari-ous methods is aligned with an ‘‘empowerment agenda’’32;we here add experiences of design and technology use basedon the specific theoretical perspective of person-centeredcare.8

The process map developed by Elwyn et al.16 was useful,although, despite their suggestion, it was not possible to

FIG. 2. Usability testing: examples of evaluative responses from key stakeholders.

DIABETES WEB SUPPORT TO CHILDBEARING WOMEN 23

develop a final tool. After using the Web support prototypefor some months in a randomized controlled study, we havealready made changes both in the information package and inthe self-care diary technical device as a result of feedback fromusers and clinicians. The fourth step of the field test (practicaluse) in the final tool is thus an ongoing process. As concludedby Storni,33 to enable appropriation of technology supportingself-care, there is a need to move beyond technological de-terminism in reflecting on whose interests the technologyserves, thus taking seriously the ideal of person-centeredness.This includes adopting Web-based support according to theemergent experiences and needs of the women with diabetes.

Methodological considerations

The participatory design,14,15 with participation of re-searchers, healthcare professionals, mothers with type 1 dia-betes, and Web designers, was crucial in the pursuit of anoptimal Web prototype. We have used the broad process mapfor development as described by Elwyn et al.16 instead of amore specific one focusing, for example, on learning andcommunity exchange such as that described by Ekberget al.,34 and not including detailed phases with the selection ofscientific data, principles for architecture, organization ofprepilot usability testing, and clinical testing as proposed byBerry et al.35 We nevertheless assess our chosen developmentprocess as effective in keeping the key participating actors infocus. On the other hand, our account of experiences (Fig. 2)

did not allow for an evaluation of details in different con-flicting or complementary perspectives among the actors.36

The Web prototype developed does not provide an auto-matic electronic transfer of data from the blood glucose metersor insulin pumps when used. The challenge is to integrate theblood glucose meter data and the data on administered in-sulin dosages and on other events influencing blood glucose,such as food intake, physical activity, and personal mood. Thecurrent Web application adapted to smartphones can be fur-ther developed to transfer and integrate measures from dif-ferent devices. For people with diabetes, the use of mobilesoftware distribution platforms is decisive as they are easilyaccessible, decision-supporting tools in daily life. However,for visualization and evaluation of the user’s daily docu-mentation, computers are still more applicable in the clinicalvisits and form the basis of a partnership for decision-making.

Conclusions and practical implications

Taking a person-centered care approach8 means that thewomen with diabetes must be treated and supported in waysthat allow them to be people rather than objectified as indi-viduals with a chronic illness, including an established ther-apeutic alliance with healthcare professionals. The applicationof a participatory design14 and a general process map fordevelopment of Web-based support16 has safeguarded per-son-centeredness for these women. Professional actors (re-searchers and clinicians in collaboration with technicians)were necessary in the development process, but more im-portant were the representatives of the users, mothers whohad type 1 diabetes and had recently experienced childbear-ing. The next step is ongoing: to test the developed Websupport for self-care and self-learning in a randomizedcontrolled trial.

Acknowledgments

This work was supported by the University of GothenburgCentre for Person-Centred Care, the Swedish DiabetesAssociation, the Inger Hultman Foundation, and The RegionVastra Gotaland.

Author Disclosure Statement

No competing financial interests exist.

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Address correspondence to:Marie Berg, PhD, RN, RM, MPH, MNSci

Institute of Health and Care ScienceSahlgrenska Academy

P.O. Box 457Gothenburg, 405 30, Sweden

E-mail: marie.berg@gu.se

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