Empowerment in people with Parkinson’s disease: A scoping review and qualitative interview study

Abstract

ObjectiveTo synthesize empowerment definitions in Parkinson’s disease (PD) literature and understand people with PD’s perspective on empowerment in the context of an existing empowerment conceptual model. MethodsThis mixed-methods study included a scoping review of PD empowerment literature and interviews with adults with PD. Five databases were searched for articles that defined empowerment concepts. We analyzed 1:1 semi-structured interviews on empowerment with people with PD. All data were analyzed using hybrid thematic analysis. ResultsEight of 242 records were included in this review. Empowerment is defined as an intrapersonal (e.g., personal control over oneself or healthcare) or interpersonal construct (e.g., person-centered care). Thirty-seven participants completed the interview. Participants perceived empowerment as a multifaceted concept that interacts with determinants and moderators from different ecological levels. ConclusionEmpowerment is a noteworthy multilevel and relational construct that can interplay with important health-related factors. The developed working conceptual model of empowerment can inform future studies to explore empowerment concepts in more depth and develop PD empowerment-based interventions. Practice implicationsThe empowerment definitions, indicators, determinants, and moderators identified in this study can help researchers, clinicians, and policymakers critically conceptualize empowerment and develop interventions to support people with PD.