Diversity-On: A diversity-sensitive online self-help program for family caregivers: A protocol for a mixed methods study

Abstract

Abstract Background Scientific research has consistently emphasized the high levels of stress encountered by family caregivers of individuals living with dementia. However, conventional self-help approaches remain underused. The 'Diversity-On' study addresses this issue. Based on a storytelling approach, it develops and evaluates an online self-help program that is participatory and diversity-sensitive, ensuring congruence with diverse identities and lifeworlds. Methods The study uses a mixed-methods design, consisting of eight work packages. These comprise: (WP 1) the establishment of a council of family caregivers (N = 12) and an expert advisory board, (WP 2) secondary data analyses (N = 32), (WP 3) development and implementation of story boards, (WP 4) participant recruitment for the online support groups (N = 156), (WP 5) implementation of the intervention, (WP 6) process evaluation (N = 20), (WP 7) outcome evaluation (quantitative N = 130, qualitative: N = 20) and (WP 8) dissemination and validation of findings. The study's principal feature is its robust participatory strategy, incorporated across the research process and extending to all work packages. The study relies on partnerships with a broad range of stakeholders who unequivocally advocate for patient concerns. Discussion Given its participatory methodology and intersectional perspective, the ‘Diversity-On’ study is expected to yield several significant outcomes. It 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 ventures despite multiple barriers, thus easing their burden. Additionally, it has the capacity to safeguard the well-being of caregiving relatives who are overburdened by excessive demands. The study’s objective is to maintain home care arrangements for an extended period, in line with the values and aspirations of care recipients and their families. The study intends to develop and assess a precisely-customized online self-help resource, suitable for a diverse range of users, to remain accessible even beyond the study's duration.