In the past ten years, there has been a growing appreciation of the 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 the elderly, particularly Alzheimer's patients. The demographic characteristics and experiences of the 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 the patient's impairment, and the physical demands of caregiving. The second is subjective burden due to the impact of caregiving on the caregiver's lifestyle and the upset caused by these changes. When compared to non-caregivers, the 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 the 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 the experiences of caregivers of the brain injured (Lezak, 1978; Zeigler, 1987) and of patients with chronic illnesses (Baines, 1984; Snyder & Keefe, 1985). These studies have documented the physical, emotional, and financial strains of family caregivers and have hinted at the lack of use of support services.
The purpose of the study outlined in this paper was to explore in greater detail the experiences and needs of caregivers of individuals with the chronic disease multiple sclerosis. Multiple sclerosis (MS) is the 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 the 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 the impact on the caregivers of providing support. The intent of the study reported here was to expand on this earlier research by examining the amount of time which family members devote to their MS relatives' care, the impact which providing such services has on the caregiver's lifestyle, and their use of respite services.
During 1986-87, a sample of multiple sclerosis patients and their primary caregivers were questioned about patient care needs and the caregiving experience. Patients were randomly selected from a membership list of the 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 the patients, and the other by individuals whom they identified as their primary caregiver (i.e. "the individual who provided them with the 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. …