Pulmonary hypertension (PH) presents a complex and life-altering burden for patients and their caregivers. Although caregivers play a pivotal role in the quality of life and well-being of PH patients, little is known about the specific challenges and needs these caregivers face. This review, titled “Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review”, was published in Pulmonary Circulation in April 2022. It synthesizes existing evidence on the experiences of caregivers for adults with pulmonary hypertension, identifying critical areas for support and future research.
Methodology
This review synthesised evidence from Web of Science, PubMed, PsycINFO, and Cochrane Library. Eight articles primarily focussed on pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension were identified investigating 456 caregivers from at least 10 countries.
Results
Four primary categories emerged, capturing essential aspects of caregiver experiences:
- Demographics: Caregivers varied widely in age, relationship to the patient, and socioeconomic background, yet all were united by the substantial role they play in managing PH-related needs.
- Responsibilities: Caregivers managed a range of duties, from coordinating medical appointments to providing emotional support, often with limited external assistance.
- Impact: Caregiving had a pronounced impact on caregivers’ mental health, physical health, and social life. High levels of stress, anxiety, and fatigue were commonly reported.
- Support: Access to informational and emotional support varied widely, with some caregivers turning to PH organizations or other caregivers for guidance and reassurance.
Through analysis, four integrated themes were identified:
- Change: The demands of caregiving required major lifestyle adjustments, with caregivers often struggling to balance their own needs with those of the patient.
- Preparedness: Many caregivers felt underprepared for the complexity of care, reporting a lack of knowledge and skills needed to meet medical and emotional demands.
- Isolation: Social isolation was a recurring issue, as caregivers reported difficulties in finding reliable information about PH and often relied on peer support from PH organizations and fellow caregivers.
- Physical and Mental Demands: Caregiving imposed a multifaceted toll on caregivers’ health, including both physical fatigue and emotional exhaustion.
Conclusion
Findings indicate that caregiving for pulmonary hypertension patients imposes a substantial burden, affecting caregivers’ physical and mental health, and highlighting an unmet need for targeted support. The themes of change, preparedness, isolation, and physical and mental demands point to areas where structured interventions could be valuable. For instance, caregiver training programs could help improve preparedness, while social and peer support networks might alleviate isolation. Further research is essential to develop and implement support interventions tailored to the unique challenges of pulmonary hypertension caregiving.
Read the full article at this link on the Wiley Online Library page
Citation
Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review, Gregg H. Rawlings, Nigel Beail, Robin Condliffe, David G. Kiely, Andrew R. Thompson, Ian Sabroe, Iain Armstrong, First published: 22 April 2022, https://doi.org/10.1002/pul2.12077