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Positive Design Framework for Carer-eSupport: A Qualitative Study to Support Informal Caregivers of Patients with Head and Neck Cancer in Sweden
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 Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.ORCID iD: 0000-0003-0732-7009
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.ORCID iD: 0000-0001-8174-579X
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.ORCID iD: 0000-0001-7472-2215
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2023 (English)In: JMIR Cancer, E-ISSN 2369-1999, Vol. 9, article id e45748Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient’s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment.

Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 healthcare professionals. Both informal caregivers and healthcare professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data.

Results: We investigated informal caregivers’ needs, critical factors for adoption, and desired functionalities of Carer eSupport.A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches.

Conclusions: This study provided an in-depth understanding of informal caregivers’ contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers’ well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful health interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC.

Place, publisher, year, edition, pages
JMIR Publications, 2023. Vol. 9, article id e45748
Keywords [en]
eHealth, subjective well-being, positive design, adaptability, informal caregivers, head and neck cancer, preparedness to care
National Category
Human Computer Interaction
Research subject
Human-Computer Interaction; Health Care Research; Cancer Epidemiology
Identifiers
URN: urn:nbn:se:uu:diva-505567DOI: 10.2196/45748ISI: 001021663600001PubMedID: 37252765OAI: oai:DiVA.org:uu-505567DiVA, id: diva2:1771281
Available from: 2023-06-20 Created: 2023-06-20 Last updated: 2024-01-11Bibliographically approved

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Ahmad, AwaisPremanandan, ShwetaLangegård, UlricaCajander, ÅsaJohansson, BirgittaCarlsson, Maria E.Ehrsson, Ylva Tiblom
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