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

• Background As 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. Methods Seventeen 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. Results Three 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. Conclusion Healthcare 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Kardiologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Cardiac and Cardiovascular Systems (hsv//eng)

Keyword

Chronic disease

Peer support

Relationship

Social support

Supportive care

Publication and Content Type

ref (subject category)

art (subject category)