Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review

Pulmonary hypertension (PH) is a heterogeneous condition, associated with a high symptom burden and high rates of disability. While nonprofessional caregivers are essential in helping patients live better, little is known about the impact on caregivers and support that is currently available. This review has synthesised evidence examining experiences of caregivers of adults with PH. Web of Science, PubMed, PsycINFO, and Cochrane Library were searched for all types of study design. Articles were evaluated and analysed using a Joanna Briggs Institute approach. Eight articles primarily focussed on pulmonary arterial hypertension and chronic thromboembolic PH were identified investigating 456 caregivers from at least 10 countries. Four categories were identified describing caregiver demographics, responsibilities, impact, and support. Four integrated themes emerged identifying possible unmet needs and therapeutic targets: (1) Change, reflecting the various demands caring had on people as they attempted to balance the needs of the patient and their own; (2) Preparedness, discussing how caregivers could feel uncertain and unskilled for their duties and unsupported; (3) Isolation, with caregivers often encountering challenges to gaining information on PH turning to PH organisations and others affected for support and connection; and (4) Physical and mental demands, reflecting the multifaceted impact of caring. Findings add to the evidence demonstrating that PH can have a considerable impact on patients' support network. Providing support for caregivers of people with PH is an unmet need and may have a positive impact on patients and is an area that requires further research.