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Designing a Mobile e-Coaching App for Immigrant Informal Caregivers: Qualitative Study Using the Persuasive System Design Model
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.ORCID iD: 0000-0003-0732-7009
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.ORCID iD: 0000-0001-6947-9409
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computing Education Research. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.ORCID iD: 0000-0001-7472-2215
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.ORCID iD: 0000-0002-3241-342X
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2023 (English)In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 11, article id e50038Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers are vital in caring for their family and friends at home who may have illnesses or disabilities. In particular, the demands for caregiving can be even more challenging for those with limited resources, support systems, and language barriers, such as immigrant informal caregivers. They face complex challenges in providing care for their relatives. These challenges can be related to sociocultural diversity, language barriers, and health care system navigation. Acknowledging the global context of the increasing number of immigrants is essential in designing inclusive mobile health apps.

Objective: This study aims to investigate the needs of immigrant informal caregivers in Sweden and discuss the application of the Persuasive System Design Model (PSDM) to develop an e-coaching prototype. By addressing the unique challenges faced by immigrant informal caregivers, this study will contribute to the development of more effective and inclusive mobile health apps.

Methods: The participants were considered immigrants and included in the study if they and their parents were born outside of Sweden. Through various channels, such as the National Association of Relatives, rehabilitation departments at municipalities, and immigrant groups, we recruited 13 immigrant informal caregivers. These immigrant informal caregivers were primarily women aged 18 to 40 years. Most participants belonged to the Middle Eastern region whereas some were from North Africa. However, all of them spoke Arabic. We used semistructured interviews to gather data from the participants in Arabic, which were translated into English. Data were analyzed using thematic analysis and discussed in relation to the extended PSDM. The needs of the caregivers were compared with the description of persuasive design principles, and a design principle was chosen based on the match. The PSDM was extended if the need description did not match any principles. Several brainstorming and prototyping sessions were conducted to design the mobile e-coaching app.

Results: Immigrant informal caregivers have various needs in their caregiving role. They reported a need for training on the illness and future caregiving needs, assistance with understanding the Swedish language and culture, and help with accessing internet-based information and services. They also required recognition and appreciation for their efforts, additional informal support, and easy access to health care services, which can be important for their mental health. The PSDM was adapted to the informal caregiving context by adding “facilitating conditions” and “verbal encouragement” as additional persuasive design principles. This study also presents the subsequent mobile e-coaching app for immigrant informal caregivers in Sweden.

Conclusions: This study revealed important immigrant informal caregivers’ needs based on which design suggestions for a mobile e-coaching app were presented. We also proposed an adapted PSDM, for the informal caregiving context. The adapted PSDM can be further used to design digital interventions for caregiving.

Place, publisher, year, edition, pages
JMIR Publications, 2023. Vol. 11, article id e50038
National Category
Information Systems, Social aspects
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:uu:diva-515872DOI: 10.2196/50038ISI: 001114803200002PubMedID: 37943598OAI: oai:DiVA.org:uu-515872DiVA, id: diva2:1811592
Funder
EU, Horizon 2020, 814 072Swedish Research CouncilSwedish Cancer Society, 2019-01231Swedish Cancer Society, 20 1014 PjFAvailable from: 2023-11-13 Created: 2023-11-13 Last updated: 2024-08-02Bibliographically approved
In thesis
1. Care for Caregivers: Designing IT Applications for Informal Caregivers
Open this publication in new window or tab >>Care for Caregivers: Designing IT Applications for Informal Caregivers
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The role of informal caregivers, who provide essential care and support to their ill or in-need relatives and friends, is crucial but frequently undervalued in the healthcare landscape. Navigating the complexities of caregiving, these individuals encounter numerous challenges that demand a considerable amount of their resources and energy, often without adequate support. Despite these difficulties, caregiving can also be a source of fulfillment and empowerment to some. IT applications can be seen as valuable support tools in the caregiving process. 

This thesis draws on six studies, utilizing semi-structured interviews and focus groups with informal caregivers, alongside discussions with healthcare professionals, to explore the intricacies of informal caregiving. It also includes a heuristic evaluation of an IT application by UI/UX experts. Through thematic analysis, the research delves into the diverse needs of native Swedish caregivers, immigrant caregivers, and caregivers of patients with head and neck cancer. It proposes design solutions tailored to these specific groups, employing persuasive and positive design principles to develop an eCoaching application and a web-based health application named ‘Carer eSupport’, respectively. These applications are designed to address the identified needs, offering support and facilitating the caregiving process.

This thesis contributes to the field of Information Systems (IS) by advancing existing theories and creating adapted frameworks specifically for informal caregiving. It provides a comparative analysis of Persuasive Design (PSD) and Positive Design, detailing their strengths and weaknesses in developing IT applications for caregivers. The research examines the design processes, outcomes, and contextual suitability of each approach, focusing on behavioral psychology in PSD and emotional wellbeing in Positive Design. Practical insights and guidelines for integrating both approaches are offered, ensuring that IT solutions are effective and empathetic. The thesis also adapts and extends these frameworks to better meet the needs of informal caregivers, providing a basis for future research to validate these adaptations. Additionally, it includes the design and evaluation of IT applications like an eCoaching platform and a web-based health application, along with providing systematic design recommendations through a comprehensive literature review.

By focusing on the needs of native Swedish, immigrant, and head and neck cancer caregivers, this research underscores the challenges caregivers face and proposes solutions to manage the caregiving journey while maintaining their well-being. Overall, it emphasizes the necessity of crafting IT applications with empathy and inclusivity, truly embodying the spirit of ‘Care for caregivers.’

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. p. 135
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Social Sciences, ISSN 1652-9030 ; 226
Keywords
Information Systems, Design Science Research, Persuasive Design, Positive Design, Informal Caregiving, Wellbeing, Qualitative
National Category
Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:uu:diva-535425 (URN)978-91-513-2189-9 (ISBN)
Public defence
2024-09-13, room B115, Ekonomikum, Kyrkogårdsgatan 10, Uppsala, 13:15 (English)
Opponent
Supervisors
Available from: 2024-08-20 Created: 2024-08-02 Last updated: 2024-08-21

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Premanandan, ShwetaAhmad, AwaisCajander, ÅsaÅgerfalk, Pär

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