Co-designing a psychoeducational intervention for FCs of institutionalized older adults : a participatory double diamond approach.

backgroundThe transition of a relative with dementia into long-term care is a critical and emotionally charged period for family caregivers, often marked by guilt, loss of role, and strained relationships with care teams. While psychosocial interventions can mitigate these challenges, few are co-designed with both caregivers and professionals to ensure contextual relevance.

methodsUsing the Double Diamond design framework, we conducted a four-phase co-design process in geriatric institutions in Île-de-France: Discover (inductive analysis of 14 interviews with family caregivers within 6 months of admission), Define (deductive validation and prioritisation of needs through focus groups with caregivers and professionals), Develop (collaborative design of a psychoeducational intervention), and Deliver (pilot testing with eight family caregivers and six professionals, followed by focus group feedback). Analyses alternated inductive and deductive approaches according to phase objectives.

resultsThe needs assessment identified ten thematic domains, including emotional ambivalence, redefinition of the caregiving role, communication breakdowns, and support gaps. These informed the creation of a seven-session group programme with two individual sessions, addressing dementia knowledge, role adaptation, communication skills, nutrition, and end-of-life planning. In the pilot phase, feasibility was high, with no dropouts and sessions deemed appropriate in number, duration, and content. Acceptability was strong, although the end-of-life module was emotionally challenging. Caregivers reported improved understanding of institutional care, enhanced communication with staff, reduced anxiety, and strengthened peer support. Professionals noted improved relationships with families and reduced conflict over day-to-day care issues. Feedback led to refinements, including short summary videos for each session, reorganisation of sensitive modules, and integration of practical communication tools in the final session.

conclusionsThis co-designed psychoeducational intervention addresses a critical gap in supporting family caregivers during the transition to institutional dementia care. Grounded in lived experiences and professional insights, it demonstrates high feasibility and acceptability, with promising benefits for caregiver well-being and family–staff collaboration. An efficacy trial is warranted to assess its impact on caregiver outcomes and institutional climate.

trial registrationNCT05651555.