Key stakeholders’ experiences and expectations of the care system for individuals affected by borderline personality disorder: An interpretative phenomenological analysis towards co-production of care

Abstract

Background The diagnosis of borderline personality disorder (BPD) consists of extreme emotional dysregulation and long-term disability when left untreated. It is associated with ineffective use of health care systems and mismanaged care in emergency departments, which can result in a revolving door phenomenon of urgent system usage, poor treatment outcomes, or patients falling out of care entirely–all of which primarily affect patients with BPD as well as their caregivers and clinicians. This crisis must be addressed with a comprehensive understanding of key stakeholder perspectives on the challenges of the system and potential solutions. Objective This study explored the perspectives of three key stakeholder groups (i.e., patients, clinicians, and caregivers) in relation to their experiences with and future expectations of the care system for those affected by BPD. Methods Four patients with BPD, three generalist clinicians with experience treating BPD, and three caregivers of individuals with BPD participated in individual semi-structured interviews. Participants were asked about their experiences with the current healthcare system and their suggestions for improvement. Responses were analyzed using interpretative phenomenological analysis. Findings In-depth analysis of the qualitative data revealed twelve shared themes and three themes that were unique to each key stakeholder group. These themes are discussed and used to inform recommendations for promising practices, policies, and training in this area. Conclusion Findings support the importance of a comprehensive mental health system approach for improving the accessibility, effectiveness, and acceptability of the management and treatment of BPD.