Shared Decision-Making in Hemophilic Arthropathy Rehabilitation: A Qualitative Study

PURPOSE: To probe into the needs and barriers underlying patients’ participation in shared decision-making related to rehabilitation nursing for hemophilic arthropathy. PATIENTS AND METHODS: The phenomenological research approach was adopted to conduct a series of semi-structured, in-depth interviews with 15 patients with hemophilic arthropathy undergoing rehabilitative treatments, 10 caregivers, and 7 healthcare providers from a hemophilia treatment center in Shanxi province, China. Colaizzi’s seven-step method of data analysis was applied to organize, analyze, and extract the themes from the interview materials. RESULTS: Three main themes emerged from the analysis: the status quo of the healthcare system (insufficient decision support systems and mismatch between healthcare providers’ and patients’ resources), circumstances of provider–patient interactions (lack of information exchange and unbalanced power structure between healthcare providers and patients), and patient-related factors influencing participation in decision-making (lack of self-efficacy, personal characteristics, family and social decision support, and attitude toward participation in decision-making). CONCLUSION: Participation in rehabilitation decision-making among patients with hemophilic arthropathy is affected by multiple barriers. Healthcare professionals should improve their understanding of shared decision-making, offer patients active guidance on participating in the decision-making process, prioritize their affective needs, and formulate professional and effective solutions to support shared decision-making as early as possible.