Participatory Development of Research Questions on Caregiver Adherence to Severe Behavior Interventions

Abstract Participatory action research is characterized by research questions, procedures, and outcomes that are reflective of the priorities and values of stakeholders. The purpose of this project was to use a mixed-method, multi-level engagement method to develop stakeholder-generated research questions on caregiver adherence to behavior interventions designed to reduce severe challenging behavior. To achieve this, we used the Stakeholder Engagement in quEstions Development and Prioritization method. Using this method, stakeholders developed conceptual maps to show potential cause-and-effect relationships between variables hypothesized to influence caregiver adherence to behavior interventions. Stakeholders identified 102 variables thought to impact caregiver adherence, with eight variables identified by all topic groups. These variables were caregiver buy-in/perception of the intervention, caregiver mental health, caregiver physical health, insurance coverage, multiple children in the home, family and community perception of behavior analysis and the child’s behavior intervention, the family’s social support system, and the intensity of the behavior intervention. After placing these variables in a conceptual map, stakeholders used the conceptual map to develop and prioritize research questions focused on caregiver adherence. This resulted in stakeholders generating a research agenda with 43 questions focused on caregiver adherence. We evaluated the participatory development of research questions on caregiver adherence to severe behavior interventions using multiple measures, including group readiness, group dynamics, and stakeholder feedback on the research agenda.