Subjective costs and benefits of online self-help group participation: findings from qualitative research with family caregivers for individuals of Turkish descent living with dementia in Germany

Introduction Caring for a family member with dementia is associated with stressors across psychological, physical, social and economic domains. Caregivers from racialized communities face additional burdens of racism and exclusion, leading to barriers in utilizing services and support-programs. Health-promotion interventions for family caregivers can ease caregiver burden by providing support, decreasing loneliness and increasing self-efficacy. Addressing structural exclusion and intersectional discrimination is essential to ensure access for caregivers from racialized communities. Methods This article presents findings from the qualitative evaluation of an online self-help program for family caregivers for individuals of Turkish descent living with dementia in Germany. Eight program participants were interviewed at two different time points. Additionally, eight interviews were conducted with individuals who declined to participate in the program for a qualitative study examining reasons for non-participation. All data were analyzed using structuring qualitative content analysis. Results The evaluation and non-participation studies highlight the subjective costs and benefits of self-help group participation. Benefits of program participation include emotional support, shared space for exchanging experiences and information and accessibility due to the online format. Costs include practical barriers as well as emotional distress. Suggestions for increasing the appeal of caregiver interventions for racialized communities include ensuring discrimination-critical facilitation and optimizing the organization of group programs. Discussion and conclusion By focusing on subjective costs and benefits, this article seeks to contribute to critical discussions on non-participation research, questioning the practice of labeling certain populations as “hard-to-reach,” while neglecting the factors that researchers and practitioners could change to make program and study participation more appealing.