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

Abstract

BACKGROUND Informal Caregivers (ICs) 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 healthcare. Research shows that ICs usually are 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 might be compromised. OBJECTIVE This study aims to explore the situation and context of ICs of patients with HNC and their needs for designing and developing an online intervention (Carer-eSupport). We propose a novel framework to develop an online intervention (Carer-eSupport) to support ICs’ well-being. METHODS Focus groups were conducted with fifteen ICs and thirteen healthcare professionals (HCPs). RESULTS We investigated ICs' needs, critical factors for adoption, and the desired functionalities of Carer-eSupport. Four major themes: Information, Online Forum, Virtual Meeting Place, and Chatbot, emerged and were discussed by ICs and HCPs for Carer-eSupport. However, the majority of 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 focus groups were also discussed through the lens of positive design research approaches. CONCLUSIONS In this study, we provided an in-depth understanding of ICs’ context and their preferred functions for an online 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 (HCI) and user experience (UX) researchers to design meaningful eHealth interventions with a clear focus on users’ well-being and positive emotions, especially for the ICs of patients with HNC. INTERNATIONAL REGISTERED REPORT RR2-10.1136/bmjopen-2021-057442

Cancer Family Members' Needs-Based Education in the Management of Anxiety: A Randomized Controlled Clinical Trial

“…providing medical assistance at home, families of cancer patients may assist with daily life activities, manage patients' medications, arrange healthcare visits (6), and aid patients in adjusting to the new realities of their lives (7). Moreover, caregivers are often involved in making a myriad of healthcare decisions from the time of diagnosis to end-of-life care.…”

Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support

“…Further, it is a collaboration with experts in medical, health and care sciences and human-computer interaction. Studies regarding the user interface are being conducted in parallel with this study (Ahmad et al, 2023). The current study will present the results of focus group discussions (FGDs) with ICs (phase I).…”