The Burden of Caregiving in Partners of Long-Term Stroke Survivors

Abstract

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 (R 2 ϭ14%), but primarily by partners' characteristics in terms of emotional distress (R 2 ϭ16%), loneliness (R 2 ϭ6%), disability (R 2 ϭ3%), amount of informal care provided (R 2 ϭ2%), unmet demands for psychosocial care (R 2 ϭ4%), and unmet demands for assistance in activities of daily living (R 2 ϭ2%). 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.

Spouses’ Quality of Life 1 Year after Stroke: Prediction at the Start of Clinical Rehabilitation

“…About 80% of the spouses reported low quality of life on one or more of the measures. The percentage of depressive spouses concurs with other stroke studies into quality of life of caregivers [7,8,9, 11, 15, 18]. Only our percentage of strained spouses is slightly higher than percentages found in other studies (35–37%).…”

“…Several cross-sectional studies have examined caregiver burden [4,5,6], mental health [7, 8]or life satisfaction [9, 10]. In these studies, five categories of caregiver quality of life variables have been identified: stroke patients’ characteristics (physical and cognitive impairment, disability or behavioral problems) [11, 12], caregivers’ demographic characteristics [11, 12], psychological factors (coping strategy, sense of coherence and depressive symptoms) [5, 8], disharmony in the family [8]and social support [11, 12]. However, the cross-sectional design of these studies limits the possibility of early identification of risk factors for caregivers’ poor quality of life at a later stage.…”

A Longitudinal Study of Health-Related Quality of Life of First Stroke Survivors’ Close Relatives

“…Reports about health consequences for stroke survivors’ relatives or caregivers often refer to psychological domains, many of them giving evidence for burden [10,11,12] and strain [13, 14], emotional distress [15,16,17], impairment in emotional well-being [18, 19] and anxiety disorders [7, 20]. Depression is prominent and recurrent [21,22,23].…”

Supporting Family Caregivers in Stroke Care

“…9 -11 Teaching family caregivers to cope with these problems and to relieve their own stress is essential, and there is some evidence that their well-being affects the health and recovery of stroke patients. [11][12][13] Problem solving emphasizes the use of a systematic approach toward problems and breaking down problems into smaller ones so that they can be solved in a more manageable way. 14 Teaching such skills has been widely used in treating clinical conditions, such as depression, phobias, anxiety, and addiction.…”