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Costs and Benefits of Caregiving Caregiving and Health Care Reform Creating Better Conditions for Care
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Always On-Call: The Health of Informal Caregivers for Seniors Pamela Hawranik, Associate Professor, Faculty of Nursing and Centre on Aging, Laurel A. Strain, Professor, Faculty of Arts and Director of Centre on Aging, University of Manitoba, prepared for the Prairie Women’s Health Centre of Excellence
Providing care to a family member or friend can involve a progressive increase in care responsibilities over a period of years while the caregiver continues to fulfil the demands of employment, meet their own personal needs and those of other family members. The impact of caregiving can hold serious consequences for a caregiver’s physical and psychological health. To examine the nature of this impact, we asked informal caregivers of seniors to share their experiences of caregiving and to discuss the factors that affected their health and their ability to manage caregiving along with their paid work and other responsibilities. We used several methods. The summary presented here addresses findings from focus groups and interviews with 30 informal caregivers and a workshop with community service providers that were conducted in Winnipeg in 2000. People were considered caregivers if they assisted a family member or friend over the age of 65 with everyday activities such as preparing meals, shopping, bathing or transportation. Twenty-four of the thirty caregivers were female. Of the 30 caregivers, 14 were spouses, 13 were adult children, two were other relatives and one was a friend. Twenty-five of the caregivers were providing care to one older adult and five were caring for two older individuals. Thirteen of the older adults had some form of cognitive impairment. None of the caregivers received any direct financial reimbursement for providing care. Five broad themes emerged from the discussions. The first had to do with the impact of caregiving on health. Fourteen of the thirty caregivers stated that their health worsened during the caregiving period. They identified both physical and emotional symptoms as responses to the older adult’s behaviour or care needs. The symptoms included sleeplessness, crying episodes and fatigue. One woman, who cared for her husband who has cognitive impairment, said, "I get these crying jags and that’s why I thought maybe things were getting a little hard for me." Another woman who was employed part-time and also cared for her mother who has Alzheimer’s disease said, "I was so exhausted for a couple of years that I would come home and go to bed at 6:00 at night and get up in the morning at 6:00—twelve hours." Caregivers who identified psychological problems indicated that caregiving was one contributing factor operating in conjunction with other life events. They stated that they felt an unending responsibility for their family member or friend. This sense of responsibility never left them, even when a hired worker remained with the older adult while they were absent. "I can never quite get them out of my mind," one caregiver said, "I’m always kind of on-call for them." A second theme emerged when several caregivers described how caregiving took a toll on their friendships and their relationships with others. "It’s a gradual isolation," one woman said. "Your life and part of your activities and part of who you are get dropped one by one." Others noted that, over time, friends displayed reluctance to contact them, and the caregivers themselves stopped phoning or going out with friends. A married caregiver caring for her parents said, "We must arrange our lives to ensure someone who can be trusted is with my parents. My husband and I…we never went on a holiday for three years." In most cases at least one family member lived near the caregiver or could be reached by telephone for advice or help. This assistance, however, was not necessarily considered to be helpful. In some cases a mutually agreed-upon plan for task sharing was present. Other caregivers did not expect other family members, such as children or grandchildren, to assist them. Those who had sole responsibility for caregiving often expressed frustration and fatigue. The senior’s desire for independence despite cognitive and functional limitations represented a third theme and a specific challenge for some caregivers. "So, under protest, she got a walker," one daughter said. "It’s sitting folded up behind her TV, covered with a blanket. She also refuses to use a cane." One caregiver noted how her parents said they were fine even when she observed their failing health. "I came to the conclusion they were so terrified of being separated they would cover up for each other." Eleven of the thirty caregivers were employed. This fourth theme carried a number of meanings: employment was seen as a resource by some, while for others it was a double bind. Nine of the eleven caregivers enjoyed their work and found it provided relief from their caregiving responsibilities. Three caregivers perceived their primary role as providing care to their family member and had modified their employment in order to do so. For these caregivers, the number of hours they spent giving care prevented them from working fulltime, which resulted in financial difficulties. Many of the participants in the focus groups said that programs and services for caregivers were limited in availability, difficult to discover and obtain, and that community service providers often excluded them from assessment and planning. Many stated they were not aware of the services that were available. When they did use services, they were frustrated by frequent changes of staff, lack of staff knowledge about the care recipient’s health, inadequately trained staff and inconsistent performance by care providers. One woman summed up the fifth broad theme of the study findings when she said, "My biggest problem with my folks has not been my folks, it has been home care. They used to send me six different people in a week." In contrast, several caregivers spoke of the relief they felt when the home care services were of good quality: "When [name of worker] was there and I came home I felt so relaxed because…there wasn’t a thing I could see that I had to do and it was so good." The issues raised by the informal caregivers were discussed at a workshop with 31 community service providers from 22 agencies. The representatives explored the barriers and challenges to providing support and devised strategies to address the gaps in services that had been raised by caregivers. Based on the workshop, the interviews and focus groups, it is clear that greater awareness of the availability of support services to informal caregivers and seniors is needed. Both informal caregivers and seniors should be supported by these services. Inviting informal caregivers to collaborate in the assessment and planning process, along with seniors and community service providers, would enhance understanding of caregiving issues and help devise innovative strategies to deal with them. For a full copy of the report, Health of Informal Caregivers, Effects
of Gender, Employment and Use of Home Care Services , contact: |
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