Care for Caregivers: The Needs of Family Members of MS Patients

Abstract

In past ten years, there has been a growing appreciation of role which family members play in providing care to their chronically ill relatives. Health and social science professionals, social science researchers and legislative policy makers are recognizing that family caregivers represent a tremendous resource and that without their dedication, a much greater percentage of chronically ill patients would require institutionalization. Most research attention has been focused on caregivers of elderly, particularly Alzheimer's patients. The demographic characteristics and experiences of caregivers of persons with Alzheimer's disease have been extensively studied. Caregivers are generally thought to experience two types of burden (Poulshock & Deimling, 1984; Zeigler, 1987). One type is objective burden due to patient's impairment, and physical demands of caregiving. The second is subjective burden due to impact of caregiving on caregiver's lifestyle and upset caused by these changes. When compared to non-caregivers, caregivers of Alzheimer's patients report: (a) higher levels of depression and more negative effect toward their relatives; (b) lower levels of life satisfaction; (c) significant impairment in social activities and less satisfaction with their social network; and (d) poorer health, more medication use and greater utilization of health care services like physician visits and hospitalization (Haley, Levine, Brown, Berry & Hughes, 1987). Despite impact of caregiving, Alzheimer's caregivers make relatively little use of community and government support services which might provide them with some relief (Castera, Lund, Wright & Redburn, 1987). Caregivers to other patient groups have been less well described. There has been some reported investigation of experiences of caregivers of brain injured (Lezak, 1978; Zeigler, 1987) and of patients with chronic illnesses (Baines, 1984; Snyder & Keefe, 1985). These studies have documented physical, emotional, and financial strains of family caregivers and have hinted at lack of use of support services. The purpose of study outlined in this paper was to explore in greater detail experiences and needs of caregivers of individuals with chronic disease multiple sclerosis. Multiple sclerosis (MS) is most common neurological illness among young North American adults. The disease often causes progressive disability; about 30 percent of patients require canes or a wheelchair to remain mobile, or eventually become bedridden (Matthews, 1985). An earlier study with this patient group (Warren, Cockerill, Paterson & Patterson, 1986) reported that family provided majority of help with personal care, household chores and transportation; relatively little assistance was provided by friends, paid employees, volunteers and government agencies. That study did not examine impact on caregivers of providing support. The intent of study reported here was to expand on this earlier research by examining amount of time which family members devote to their MS relatives' care, impact which providing such services has on caregiver's lifestyle, and their use of respite services. Methods During 1986-87, a sample of multiple sclerosis patients and their primary caregivers were questioned about patient care needs and caregiving experience. Patients were randomly selected from a membership list of Multiple Sclerosis Society of Canada, Toronto Chapter. Data were collected by a mailed questionnaire, consisting of two parts. One part was to be completed by patients, and other by individuals whom they identified as their primary caregiver (i.e. the individual who provided them with most care and assistance). For patients in health care facilities (nursing homes and chronic care institutions), primary caregiver was additionally defined to exclude paid employees. …