Optimizing a stroke caregiver support programme in practice with Participatory Action Research

Abstract

Abstract Family caregivers (FCG) play a key role in the day-to-day care of stroke survivors. Most FCG support programmes are complex public health interventions. Often, they are designed top-down without key stakeholder participation. Hence, when implementing these programmes in real world settings, they may experience “teething problems”. Optimization in practice and actively engaging its stakeholders to accurately fit the programme to the needs in practice may enhance the programmés chance of success. The Participatory Action Research (PAR) strategy was chosen for the optimization of a German primary prevention programme for stroke FCGs. Immediately after the development of the preliminary support concept (5 Conceptual Building Blocks - CBB), conducted top-down by the academic research team, iterative PAR-cycles (observe - reflect - plan - act) were applied. Together with the stakeholders (service providers and FCG), three steps were taken: (1) verifying and fitting the preliminary CBBs, (2) detecting, developing, verifying and fitting new blocks, and (3) prioritizing all blocks. For data collection a multi-methodological design was chosen. Through PAR, a matured FCG support concept was obtained, containing eight CBBs. The five preliminary CBBs: ‘Content’, ‘Human resources’, ‘Personalized approach’, ‘Timing’, and ‘Setting’, were optimized and prioritized as core blocks, providing the base for individual caregiver support. Three new CBBs: ‘Network building’, ‘Communication’, and ‘Social safety-net’ were assigned as facilitating blocks, interlinking and securing the programme within the existing support system. PAR was found to be essential for both systematically detecting conceptual weaknesses of the preliminary concept and adjusting its components to the needs of the key stakeholders, before full-scale implementation. Involvement of stakeholders, with high levels of participation, will enhance the acceptance of the matured concept and its feasibility in practice.