Support Experienced by Patients Living with Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension

BackgroundAs pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are debilitating and fatal diseases it is essential to increase the understanding of patients' experience of support. The aim was to describe patients' experiences of support while living with PAH or CTEPH.MethodsSeventeen patients (13 women and four men) aged 28-73 years were strategically selected from a regional PAH centre and individually interviewed. The answers were analysed using qualitative content analysis.ResultsThree categories that describe patients' experiences of support emerged: Support linked to the healthcare; support linked to the private sphere; and support linked to persons outside the private sphere.ConclusionHealthcare practitioners must work more in collaboration to detect patients' need for support and to develop the patient's own skills to manage daily life. The PAH teams should tailor interventions to provide emotional, informational and instrumental support and guidance to patients and their families.