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Designing and Evaluating IT Applications for Informal Caregivers: Protocol for a Scoping Review
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, Division Vi3. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction.ORCID iD: 0000-0001-6947-9409
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction.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 Research Protocols, E-ISSN 1929-0748, Vol. 12, article id e47650Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
JMIR Publications, 2023. Vol. 12, article id e47650
Keywords [en]
burnout, caregiver, caregiving activity, design guidelines, design, development, digital health, digital resources, effectiveness, evaluation, health care services, implementation, informal caregiver, IT applications, long term care, mobile app, smartphone, usability, work-life balance
National Category
Information Systems
Identifiers
URN: urn:nbn:se:uu:diva-507526DOI: 10.2196/47650ISI: 001026651300001PubMedID: 37410533OAI: oai:DiVA.org:uu-507526DiVA, id: diva2:1781104
Funder
EU, Horizon 2020, 814072Swedish Research Council, 2019-01231Swedish Cancer Society, 201014 PjFAvailable from: 2023-07-07 Created: 2023-07-07 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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Review Protocol(402 kB)306 downloads
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Premanandan, ShwetaAhmad, AwaisCajander, ÅsaÅgerfalk, Pär

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