Burden, resilience and coping in caregivers of patients with interstitial lung disease.
R J Shah, H R Collard, J Morisset
PMID 29627072WHAT IT FOUND
Caregivers of patients with interstitial lung disease report significantly lower mental quality of life than the general population, driven by emotional strain.
Those caring for patients on oxygen report higher burden and worse physical health. Caregivers need inclusion in visits, practical home advice, and specific support groups.
Key findings
01Caregivers had significantly lower mental component summary scores (mean 37) compared to national averages, particularly in the role-emotional domain (mean 18).
02Caregivers of patients using supplemental oxygen reported significantly higher perceived burden and lower physical quality of life scores than those whose patients did not use oxygen.
03Qualitative themes identified a need for caregivers to be included in physician visits and pulmonary rehabilitation education, and for caregiver-specific support groups to reduce isolation.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
The study was conducted at a single academic center, which may not reflect the experience of caregivers in community settings. The sample size was small (37 survey respondents, 15 focus group participants). Selection bias may exist, as caregivers who chose to participate might have felt more affected by the disease than those who did not. Some patients were recently diagnosed, so the full long-term burden of progressive disease may not be captured.
Declared interests
The study was supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health. No other conflicts of interest were declared.
The easy way to misread this
Do not assume that high resilience scores mean caregivers are coping well. The study found that despite reporting resilience similar to the population average, caregivers had significantly impaired mental quality of life and high emotional burden.