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Economic and objective burden of caregiving on informal caregivers of patients with systemic vasculitis
Author(s) -
Nguyen Joehl T.,
Roberts Courtney,
Thorpe Carolyn T.,
Thorpe Joshua M.,
Hogan Susan L.,
McGregor Julie,
Geryk Lorie,
Carpenter Delesha M.
Publication year - 2019
Publication title -
musculoskeletal care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.628
H-Index - 28
eISSN - 1557-0681
pISSN - 1478-2189
DOI - 10.1002/msc.1394
Subject(s) - medicine , caregiver burden , quality of life (healthcare) , intervention (counseling) , quarter (canadian coin) , population , family caregivers , gerontology , mental health , economic impact analysis , psychiatry , nursing , environmental health , disease , pathology , engineering , history , dementia , civil engineering , archaeology
Systemic vasculitis (SV) is associated with substantial economic impact to patients and the healthcare system but little is known about the burden of SV on informal caregivers. We evaluated the objective caregiving burden experienced by informal caregivers of patients with SV. Methods We surveyed adult patients and their informal caregivers on the physical, emotional, social and economic impacts of SV. We asked patients about the extent to which they felt they were a burden to their identified caregivers. Caregivers reported the direct and indirect economic impact of SV, including employment disturbance, income loss and relative time investment of caregiving for their care recipient's SV. We used the Inventory of Caregiving Activities Questionnaire to compute the objective caregiving burden. Results We analysed data from 68 SV patient–caregiver dyads. Patients reported moderate levels of subjective burden to their caregivers. Over one‐quarter of caregivers reported ever having lost some income owing to caregiving for SV. Caregivers reported spending a median of 19 weekly hours on various caregiving tasks, including a median 17 weekly hours on household activities. Discussion Given the extended hours that caregivers spend caring for their care recipient, intervention targets should aim to reduce caregiver burnout in the SV population. Future research should examine the relationship between the objective burden of caregiving for SV and the overall physical health, mental health and quality of life of caregivers.