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

肺动脉高压患者自我管理的困境:一项描述性现象学研究

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Abstract

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.

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