Designing a Mobile e-Coaching App for Immigrant Informal Caregivers: Qualitative Study Using the Persuasive System Design Model.

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.

Designing and Evaluating IT Applications for Informal Caregivers: Protocol for a Scoping Review.

BACKGROUND: A growing number of informal caregivers in many countries are important for effective functioning of health care in our society. Hence, they must receive the required support and services to continue providing care. IT applications can be used to support informal caregivers in their caregiving activities. However, evidence-informed guidelines for developing such IT applications and their evaluation are scarce. Hence, this scoping review can aid researchers and designers by providing design recommendations for IT apps for caregivers and potentially improve the design of IT applications for caregivers to meet their needs better. OBJECTIVE: This study aims to describe the proposal for a scoping review of current practices and recommendations in designing and evaluating IT applications for informal caregivers. The scoping review will also discuss the opportunities and challenges in designing these IT applications. METHODS: We will use a 5-step scoping review methodology to map relevant literature published as follows: (1) identify the research question, (2) identify relevant studies, (3) select relevant studies for review, (4) chart the data from selected literature, and (5) summarize and report results. A structured search will be conducted in PubMed, Scopus, IEEE digital library, Web of Science, and ACM Digital Library databases. In addition, hand searches of reference lists and keyword searches in Google Scholar will also be conducted. Inclusion criteria will be researched (journal and conference) articles focused on IT applications designed for use by informal caregivers and study type to be qualitative studies. Two reviewers will independently identify articles for review and extract data. Conflicts will be discussed, and a third reviewer will be consulted if a consensus cannot be reached. These data will be analyzed using thematic analysis. RESULTS: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. Uppsala University first initiated this scoping review protocol in December 2021 as part of the European Union-funded project ENTWINE. This work was also supported by the Swedish Research Council and the Swedish Cancer Society. The results will be presented in August 2023 and will be disseminated through a report to the European Union and a peer-reviewed journal publication. In addition, the team plans to share its findings on various public platforms, including social media, blog posts, and relevant conferences and workshops. CONCLUSIONS: This is, to our knowledge, the first study to map the literature on the design and evaluation of IT applications for informal caregivers. The scoping review's results will detail the requirements, design suggestions, and user preferences, as well as the usability criteria and features of IT applications for informal caregivers. A mapping of studies could inform the design and implementation of future IT applications for informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47650.

Design suggestions for a persuasive e-coaching application: A study on informal caregivers' needs.

Objective: Informal caregivers such as relatives or close friends of patients are essential for caregiving at home. However, caregiving is a complex experience that may affect the caregivers' well-being. Therefore, there is a need to provide support for caregivers, which we address in this article by proposing design suggestions for an e-coaching application. This study identifies the unmet needs of caregivers in Sweden and provides design suggestions for an e-coaching application using the persuasive system design (PSD) model. The PSD model offers a systematic approach to designing IT interventions. Methods: A qualitative research design was used, and semi-structured interviews were conducted with 13 informal caregivers from different municipalities in Sweden. A thematic analysis was performed to analyze the data. The PSD model was used to map the needs emerging from this analysis to propose design suggestions for an e-coaching application for caregivers. Results: Six needs were identified, and based on them, we proposed design suggestions for an e-coaching application using the PSD model. These unmet needs are monitoring and guidance, assistance to avail formal care services, access to practical information without being overwhelmed, feeling of community, access to informal support, and grief acceptance. The last two needs could not be mapped using the existing PSD model, resulting in an extended PSD model. Conclusion: This study revealed the important needs of informal caregivers based on which design suggestions for an e-coaching application were presented. We also proposed an adapted PSD model. This adapted PSD model can be further used for designing digital interventions in caregiving.

Designing a Persuasive E-Coaching Application for Informal Caregivers.

Being an informal caregiver is not easy, and might cause physical and psychosocial burden, especially in the long run. However, the formal health care system has little support for informal caregivers who experience abandonment and lack information. Mobile health can potentially be an efficient and cost-effective way of supporting informal caregivers. However, research has shown that mHealth systems often have problems with usability, and people do not use the systems for more than a short period. Therefore, this paper explores the design of an mHealth app using Persuasive Design, an established design framework. This paper presents the design of the first version of the e-coaching application using the persuasive design framework and unmet needs of informal caregivers from the literature. This prototype version will be updated based on interview data from informal caregivers in Sweden.