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Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media, Human-Computer Interaction.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, 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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2024 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 26, article id e57393Article, review/survey (Refereed) Published
Abstract [en]

Background: Informal caregivers, often family members or friends, play a crucial role in supporting individuals with chronic illnesses, disabilities, or age-related needs. However, the demands of caregiving can be overwhelming, leading to stress, burnout, and negative impacts on caregivers’ well-being. IT applications have emerged as potential solutions to support informal caregivers, but their design and evaluation often lack a comprehensive understanding of caregivers’ needs and preferences. By understanding caregivers’ perspectives on these issues, this review aimed to inform the development of more effective and user-centered IT solutions that truly support caregivers’ needs.

Objective: The purpose of this study was to conduct a scoping review to outline design recommendations for IT applications gathered from informal caregivers. In addition, this study presents evaluations of the use of IT applications by informal caregivers.

Methods: A five-step scoping review methodology was used to map relevant literature in the following manner: (1) research question identification, (2) relevant study identification, (3) selection of pertinent studies for review, (4) data charting from the selected literature, and (5) summarization and reporting of results. A structured search was conducted across the PubMed, Scopus, IEEE Xplore Digital Library, Web of Science, and ACM Digital Library databases. In addition, reference list hand searches and keyword searches in Google Scholar were undertaken. The inclusion criteria comprised research articles (journal and conference) focusing on IT applications tailored for informal caregivers, primarily qualitative studies. Two reviewers independently identified articles for review and extracted the data. Conflicts were resolved through discussion, with a third reviewer consulted if consensus could not be attained. Thematic analysis was used to analyze the data.

Results: A total of 82 articles were selected for the scoping review—44 (54%) related to design and 39 (48%) related to evaluation of IT applications. Six overarching themes emerged related to designing IT applications: information access, support systems, streamlining care-related tasks, fostering informal caregivers’ well-being, communication with formal health care professionals, and task support. Furthermore, 3 broad themes emerged related to the evaluation of IT applications for informal caregivers: facilitators of using IT applications, barriers to using IT applications, and suggestions for improving IT applications for informal caregivers.

Conclusions: To our knowledge, this is the first study to map the literature on the design and evaluation of IT applications for informal caregivers. This scoping review outlines current practices and recommendations for designing and evaluating the use of IT applications for informal caregivers. It identifies 6 key design themes and 3 evaluation themes, offering valuable insights for future development in this field. These findings provide a road map for enhancing user-centric IT solutions in informal caregiver support technologies.

Place, publisher, year, edition, pages
JMIR Publications, 2024. Vol. 26, article id e57393
Keywords [en]
burnout, caregiver, design guidelines, design recommendations, evaluation, health care services, implementation, informal caregiver, long-term care, mobile app, facilitators, barriers, usability, work-life balance
National Category
Information Systems Human Computer Interaction
Identifiers
URN: urn:nbn:se:uu:diva-535419DOI: 10.2196/57393ISI: 001410396000002PubMedID: 39442167Scopus ID: 2-s2.0-85207409849OAI: oai:DiVA.org:uu-535419DiVA, id: diva2:1886061
Funder
EU, Horizon 2020, 814072Swedish Research Council, 2019-01231Swedish Cancer Society, 20 1014 PjFAvailable from: 2024-07-29 Created: 2024-07-29 Last updated: 2025-02-25Bibliographically 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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