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From the Department of Social Medicine (W.J.M.S. op R., P.T.R., G.A.M.
van den B.), the Department of Clinical Epidemiology and Biostatistics (R.J.
de H.), and the Department of Neurology (M.L.), Academic Medical Center,
University of Amsterdam, the Netherlands.
Background and Purpose—Few data are
available on the specific caregiving-related problems of stroke
patients' caregivers and factors that influence the burden of these
caregivers. The aim of this study was to describe the level and
specific nature of the burden of caregiving as experienced by stroke
patients' partners and to estimate the relative contribution of
patient and partner characteristics to the presence of partners'
burden.
Methods—As part of a multicenter study on quality of care, burden
of caregiving was assessed in 115 partners at 3 years after stroke.
Explanatory factors of burden were studied in terms of (1)
characteristics of patients (sociodemographic status, severity, type,
and localization of stroke, disability, handicap, and unmet care
demands) and (2) characteristics of partners (age, sex, disability,
quality of life, loneliness, amount of care provided, and unmet care
demands).
Results—Partners of stroke patients perceived most caregiving
burden in terms of feelings of heavy responsibility, uncertainty about
patients' care needs, constant worries, restraints in social life, and
feelings that patients rely on only their care. Multiple regression
analysis revealed that a higher level of burden could partly be
explained by patients' disability
(R2=14%), but primarily by partners'
characteristics in terms of emotional distress
(R2=16%), loneliness
(R2=6%), disability
(R2=3%), amount of informal care provided
(R2=2%), unmet demands for psychosocial
care (R2=4%), and unmet demands for
assistance in activities of daily living
(R2=2%).
Conclusions—Higher levels of burden are primarily related to
partners' emotional distress and less to the amount of care they
provided, or to patients' characteristics. Sharing responsibilities,
helping to clarify the patients' needs, and getting occasional relief
of caregiving may be important in the support of caregivers.
© 1998 American Heart Association, Inc.
Original Contributions
The Burden of Caregiving in Partners of Long-Term Stroke Survivors
Key Words: caregivers • stress, psychological • stroke management
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