Burden, resilience and coping in caregivers of patients with interstitial lung disease.

ABSTRACT: RATIONALE:Prior work has described the experience of caregiving in idiopathic pulmonary fibrosis, but the effect on caregivers in interstitial lung disease (ILD) has not been explored. OBJECTIVES:Describe the burden, resilience, and health related quality of life (HRQoL) of caregivers of people with ILD. METHODS:In a mixed methods study, ILD caregivers completed questionnaires and participated in focus groups. A qualitative thematic analysis of the focus group transcripts was conducted. RESULTS:Thirty seven caregivers completed the survey, and 15 participated in the focus groups. 65% were female; the average age was 66 (SD = 13). The mean Short Form-36 role emotional and mental health scores were 18 (SD = 4) and 46 (SD = 7). The focus groups identified 4 major themes: emotional burden, changes in relationship, coping strategies, and unmet needs of caregivers. CONCLUSIONS:Caregiving for patients with ILD significantly impairs HRQoL, particularly, emotional health. Increasing resources could improve the caregiving experience in ILD.

SUBMITTER: Shah RJ 

PROVIDER: S-EPMC6083878 | biostudies-literature | 2018 May - Jun

REPOSITORIES: biostudies-literature