Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden

JMIR Cancer · 7 authors, 5 centres

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TL;DR

This qualitative focus group study explored the needs and preferences of informal caregivers of head and neck cancer patients and health care professionals for designing a web-based support intervention. The central result was the identification of key desired functions, including tailored information and peer support forums, and the proposal of a positive design framework to guide the intervention's development.

Full summary

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The study used thematic analysis of focus groups conducted with 15 informal caregivers and 13 health care professionals from three Swedish university hospitals. Four major functional themes emerged: information, a web-based forum, a virtual meeting place, and a chatbot. Participants strongly preferred tailor-made information and peer-to-peer forums but expressed distrust and a preference for human contact regarding chatbots. A novel positive design framework was proposed to guide the intervention's development, focusing on promoting user well-being and positive emotions. The findings offer a foundation for developing meaningful eHealth tools for this caregiver population.

STUDY TYPE

other

SPECIALTY

oncology

SUMMARISED BY

AI pipeline

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100% · A

ORIGINAL PAPER

PMC10265409

Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden

JMIR Cancer

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ABSTRACT

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 health care professionals. Both informal caregivers and health care 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 eHealth interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC. International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2021-057442

CITATION EXPORT

Awais Ahmad, Shweta Premanandan, Ulrica Langegård et al.. Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden. JMIR Cancer. (2023). https://doi.org/10.2196/45748

AUTHORS

7 · 5 CENTRES

Awais Ahmad, Shweta Premanandan, Ulrica Langegård, Åsa Cajander, Birgitta Johansson, Maria Carlsson, Ylva Tiblom Ehrsson

1 Division of Visual Information and Interaction Department of Information Technology Uppsala University Uppsala Sweden
2 Department of Informatics and Media Uppsala University Uppsala Sweden
3 Genetics and Patology, Experimental and Clinical Oncology Department of Immunology Uppsala University Uppsala Sweden
4 Lifestyle and Rehabilitation in Long-Term Illness Department of Public Health and Caring Sciences Uppsala University Uppsala Sweden
5 Otorhinolaryngology and Head and Neck Surgery Department of Surgical Sciences Uppsala University Uppsala Sweden

EDITOR / REVIEWER

Amaryllis Mavragani, Areti Efthymiou