Pulmonary hypertension (PH) is a progressive, life-limiting disease that significantly affects quality-of-life (QoL). Limited research has explored lived experiences of individuals with PH. Guided by Parse’s human becoming theory, this qualitative descriptive phenomenological study explored the lived experiences of individuals affected by PH and examined how activity-induced respiratory distress affected QoL. The research Question was: How do individuals with PH describe the impact of activity-induced respiratory distress on their QoL. I conducted interviews with nine participants, including eight adults diagnosed with PH and one caregiver of an individual with PH. Data were analyzed using Saldaña's comparative coding framework to identify categories, patterns, and overarching themes. Six themes emerged: (a) total life disruption and identity loss, (b) physical burden and functional limitation, (c) emotional and psychological impact, (d) social isolation and relationship strain, (e) system burden and gaps in supportive care, and (f) adaptation, resilience, and coping. Participants described PH as affecting every aspect of daily life, including physical functioning, emotional well-being, relationships, healthcare management, and future planning. Findings also revealed an ongoing process of redefining self, priorities, and QoL while adapting to disease progressions. Recommendations include improving care coordination, expanding access to PH-specific education and supportive services, integrating palliative care earlier in the disease process, and conducting additional research to evaluate interventions that improve adaptation and QoL.

Defining Quality of Life: The Lived Experience of Adults with Pulmonary Hypertension and the Impact of Activity-Induced Respiratory Distress
Bethany Jean Adams

