Affiliation:
1. Faculty of Health/School of Medicine, Health Services Research Unit Witten/Herdecke University Witten Germany
2. Berlin School of Public Health Alice Salomon University Berlin Berlin Germany
3. Demenz Support Stuttgart gGmbH Stuttgart Germany
Abstract
ABSTRACTBackgroundScientific research has consistently emphasised the high levels of stress encountered by family caregivers of individuals living with dementia. However, conventional self‐help approaches remain underutilised. The ‘Diversity‐On’ study addresses this issue. The study employs a storytelling approach to develop and evaluate an online self‐help program that is participatory and diversity‐sensitive, thereby ensuring congruence with diverse identities and lifeworlds.MethodsThe study uses a mixed‐methods design, comprising the allocation and implementation of the intervention, the development of stories, a process evaluation (N = 20) and an outcome evaluation (quantitative: N = 130, qualitative: N = 20). The study's primary focus is its comprehensive participatory approach, integrated throughout the research process. The study is dependent on the input of a number of stakeholders, all of whom are committed to advocating for the concerns of patients.DiscussionGiven its participatory methodology and intersectional perspective, the ‘Diversity‐On’ study is anticipated to yield a number of significant outcomes. The study has the potential to empower family caregivers of individuals living with dementia who are under high stress, empowering them to take part in self‐help groups despite multiple barriers, thus alleviating their burden. Additionally, it has the capacity to promote the well‐being of caregiving relatives who are providing care and are experiencing high levels of stress. The study's objective is to maintain home care arrangements for as long as possible, in accordance with the values and preferences of care recipients and their families. The study intends to develop and assess a customised online self‐help resource that is suitable for a diverse range of users and that remains accessible beyond the study period.Trial RegistrationThe project is subsequently registered in ClinicalTrials.gov
Funder
Gemeinsame Bundesausschuss