Dilemmas of Self-Management in Patients with Pulmonary Arterial Hypertension: A Descriptive Phenomenological Study

Objective: To explore how patients with PAH experience self-management challenges. Methods: A descriptive phenomenological research was applied to conduct face-to-face, semi-structured, in-depth interviews with 12 patients diagnosed with PAH recruited from Fuwai Central China Cardiovascular Hospital in Henan Province, from January to June 2025. The collected data were analyzed using Colaizzi’s phenomenological analysis method. Results: Analysis revealed two overarching themes: (1) Individual-level barrier, comprising lack of awareness,insufficient knowledge about medications and disease management, and heavy financial burden; and (2) Contextual challenges, comprising uncertainty about the disease progression, lack of family and social support, poor accessibility to medications, and disruptions due to public health emergencies. Conclusion: Patients with PAH face significant multi-faceted barriers to effective self-management. Interventions should be multifaceted, involving structured patient education, psychological support, family involvement, and policy-level changes to improve drug accessibility and financial support. Plain Language Summary: Why was this study done? We wanted to understand the daily challenges faced by people in China living with Pulmonary Arterial Hypertension (PAH), a serious heart and lung condition, when they try to manage their health outside of the hospital. What did the researchers do? We conducted in-depth interviews with 12 PAH patients from one hospital in China. We asked them about their experiences, struggles, and needs in managing their condition. What did the researchers find? Patients faced challenges from within themselves (like not fully understanding their disease and the heavy cost of treatment) and from their environment (like difficulty getting medicines and a lack of support from family or society, especially during events like the COVID-19 pandemic). What do the results mean? The results show that PAH patients need better support. Healthcare providers should offer clear, ongoing education and psychological help. Families should be more involved in care. The government and insurers could help by making medicines easier to get and more affordable. This study helps us understand how to better support PAH patients in their daily lives.