Objective Informal caregivers such as relatives or close friends of patients are essential for caregiving at home. However, caregiving is a complex experience that may affect the caregivers’ well-being. Therefore, there is a need to provide support for caregivers, which we address in this article by proposing design suggestions for an e-coaching application. This study identifies the unmet needs of caregivers in Sweden and provides design suggestions for an e-coaching application using the persuasive system design (PSD) model. The PSD model offers a systematic approach to designing IT interventions. Methods A qualitative research design was used, and semi-structured interviews were conducted with 13 informal caregivers from different municipalities in Sweden. A thematic analysis was performed to analyze the data. The PSD model was used to map the needs emerging from this analysis to propose design suggestions for an e-coaching application for caregivers. Results Six needs were identified, and based on them, we proposed design suggestions for an e-coaching application using the PSD model. These unmet needs are monitoring and guidance, assistance to avail formal care services, access to practical information without being overwhelmed, feeling of community, access to informal support, and grief acceptance. The last two needs could not be mapped using the existing PSD model, resulting in an extended PSD model. Conclusion This study revealed the important needs of informal caregivers based on which design suggestions for an e-coaching application were presented. We also proposed an adapted PSD model. This adapted PSD model can be further used for designing digital interventions in caregiving.
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
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
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. CLINICALTRIAL INTERNATIONAL REGISTERED REPORT DERR1-10.2196/47650
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