Caregiver Burden Among Informal Caregivers Assisting People with Multiple Sclerosis

Abstract

Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The results of this study suggest that treating patient bladder dysfunction and facilitating respite care may reduce burden and improve the mental health of informal caregivers of people with MS. Future research should identify programs and services designed specifically to reduce burden experienced by male caregivers. Int J MS Care. 2011;13:76-83.

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

“…MS is mostly diagnosed in early or middle adulthood, impacting family relations and the building and maintaining of a working career (Buhse, 2008). Life partners often become caregivers and provide daily assistance with personal care, homemaking, mobility, leisure activities and in coping with the disease (Buchanan et al, 2011;Carton et al, 2000). A recent study found that 58% of persons with MS report having at least one caregiver (Katsavos et al, 2017).…”

“…Research into positive aspects of caregiving for caregivers is scarce; the few studies that have been done report an increased sensitivity towards another person's needs and problems, companionship and a sense of fulfilment (Cohen et al, 2002;Knight et al, 1997). Other studies have found negative effects of caregiving on the caregiver's physical and mental health, social participation and financial situation (Buchanan et al, 2011;Buhse, 2008;Giordano et al, 2016;McKeown et al, 2003). Aspects of caregiving that were most negatively rated by spouses of persons with MS concerned worries about the future, the time burden involved and the fact that caregiving leads to more restrictions to life and less time available for the rest of the family (Knight et al, 1997).…”

“…Several studies examined caregiver and/or care recipient characteristics involved with caregiver strain when providing informal care for a person with MS. From the caregiver's perspective, an increased ability to cope with caregiving and satisfaction with social support were associated with less caregiver strain (Knight et al, 1997), while a higher number of caregiving hours, more restrictions to the caregiver's ability to perform daily activities, higher carer anxiety, low household income and living with the care recipient were associated with higher caregiver strain (Buchanan et al, 2011;Giordano et al, 2016). Studies were inconsistent on whether male or female caregivers experience more strain (Buchanan et al, 2011;Giordano et al, 2016;Knight et al, 1997;Perrin et al, 2015). In terms of characteristics of the person with MS, the most distressing MS symptoms for spousal caregivers were motor problems and gait disturbance, sudden mood changes, the partner upsetting other people, incontinence and pain (Knight et al, 1997).…”

“…In terms of characteristics of the person with MS, the most distressing MS symptoms for spousal caregivers were motor problems and gait disturbance, sudden mood changes, the partner upsetting other people, incontinence and pain (Knight et al, 1997). Higher caregiver strain was associated with higher disability of the person with MS (Figved et al, 2007;Katsavos et al, 2017), less activities of daily living without assistance (Chipchase and Lincoln, 2001) and an increased frequency of bladder dysfunction (Buchanan et al, 2011). The patient's age and disease duration have been positively associated with (aspects of) caregiver strain in some studies (Figved et al, 2007;Katsavos et al, 2017) but not in another (Knight et al, 1997).…”

Factors related to caregiving for individuals with spinal cord injury compared to caregiving for individuals with other neurologic conditions

“…Being in an informal caregiving role has been associated with negative outcomes such as depression, caregiver burden, and poor health-related quality of life in informal caregivers of a wide range of cohorts (i.e. traumatic brain injury (TBI), 6 dementia, 7 stroke, 8,9 multiple sclerosis (MS) 10 variables related to negative outcomes in the informal caregiving role, e.g. degree of disability of the care recipient, 11 amount of time spent providing care, 7 and mental health status of the caregiver, as being tied to caregiver outcomes.…”