The experiences of patients with pulmonary arterial hypertension receiving continuous intravenous infusion of epoprostenol (Flolan) and their support persons

摘要

Objective: Little is known about the day-to-day experiences of patients and their support persons during the course of epoprostenol treatment for pulmonary arterial hypertension (PAH). The study objective was to describe the experiences of patients and their support persons adjusting to PAH and continuous intravenous epoprostenol. Methods: A qualitative descriptive design with semistructured interviews was conducted jointly with the patient and his/her support person. Seven patients and their support persons (spouse, child, friend) were included. Results: Patients demonstrated personal growth and resilience as they adapted to PAH. Four patient themes emerged: initial shock, figuring it out, giving life, and ongoing struggles. Themes specific to the support person included "their life is in my hands," pressure to perform, and continuation of my role. Conclusion: Nurses may assist these patients and support persons by teaching technical skills, problem-solving and troubleshooting strategies, mobilizing social support, and providing opportunities to reflect on lifestyle changes and long-term adjustment to PAH.