Patient-Caregiver Dyads in Severe and Advanced COPD: Relationships, Caregiving Burden, and Intervention Support: A...

Informal caregivers are central to the home management of severe and advanced chronic obstructive pulmonary disease (COPD), particularly when patients have high symptom burden, recurrent exacerbations, respiratory disability, long-term oxygen therapy (LTOT), or home non-invasive ventilation (NIV). This narrative review synthesizes evidence on patient-caregiver relationships, caregiving burden, and intervention support in these high-need COPD phenotypes.

We conducted an iterative narrative review using PubMed as the primary database, citation chaining from included literature, and targeted searches of guideline and organizational sources through March 2026. The synthesis drew on 96 publications spanning quantitative and qualitative studies, systematic and narrative reviews, randomized trials and trial protocols, clinical practice guidelines, and policy reports. Evidence was charted by design, population/phenotype, measures or intervention, main findings and key limitations.

Four dimensions emerged from the evidence: (1) multidimensional caregiver burden; (2) changing patient-caregiver relationship dynamics; (3) evolving caregiver roles across the severe-COPD trajectory, including LTOT, home NIV, exacerbations, hospitalization, and palliative care; and (4) intervention and support-system responses. Caregivers report anxiety, depression, fatigue, social restriction, financial strain, and uncertainty, while patient-caregiver disagreement about symptoms and support can intensify distress. Evidence is strongest for guidelines and systematic reviews confirming high need and for selected rehabilitation and breathlessness interventions; it is weaker for caregiver-specific, long-term, technology-supported, and low-resource interventions. The Zarit Burden Interview is widely used but has limited content validity in COPD caregiving; COPD-specific or caregiver-validated measures such as Informal Caregiver Burden Assessment Questionnaire (QASCI) and the Carer Support Needs Assessment Tool warrant greater use.

For people with severe or advanced COPD who depend on regular home support, care should more consistently recognize the patient-caregiver dyad as an important unit of assessment and intervention. Routine caregiver needs assessment, education for advanced home therapies, family-inclusive rehabilitation, psychological support, and needs-based palliative care are promising components of care.