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Health Care Reform Serving Diversity Unpaid Caregiving Midwifery
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Caregivers’ Support Needs: Insights from the Experiences of Women Providing Care in Rural Nova Scotia Joan Campbell, Gail Bruhm, Provincial Coordinator, Family Caregivers Association of Nova Scotia, and Susan Lilley
Rather than positioning unpaid family caregivers at the periphery of homecare policy, this study acknowledges their central role. Insights gathered from a group of 46 family caregivers in rural Nova Scotia point to a pressing need to recognize and support the contribution of this unpaid, almost exclusively female, sector of the health care system. The caregivers we spoke with report that the system does not value their role as primary caregivers, nor does it provide them with appropriate information, training, services and urgently needed respite care. Family caregivers need to be involved in shaping the policies, programs and treatment choices that affect them and those they care for. A major thrust of Canadian policy on both long-term care and health care reform is to shift care from institutions to communities. As seniors, the disabled, and the chronically ill receive less institutional care, more responsibility is transferred to their caregivers, who in most cases are family members. Yet governments are redirecting only a fraction of the savings from closing hospitals and substituting care by unpaid family members to provide support for those caregivers and care recipients in the community. It is important to note that this national shift to communitybased care is not gender neutral. The label “family caregivers” obscures the fact that women constitute the majority of caregivers. Two-thirds (66%) of unpaid family caregivers are women. This represents approximately 14% of all Canadian women over the age of 15. Of those caring for people with dementia, 72% are women. The needs of caregivers are likely to be greatest, and the resources fewest, in small communities and rural areas. This research project used structured dialogue to gather the views and experiences of rural caregivers. We invited both male and female unpaid family caregivers to share and analyze their stories of caregiving. We wanted to obtain practical knowledge about formal and informal services, programs and supports for caregivers. Another aim was to give voice to and validate caregivers’ experiences. Data were collected and analyzed through four, day-long workshops, each held in a different health region of Nova Scotia. Nine to 16 caregivers participated in each workshop. Caregivers analyzed their individual and collective experiences through a process entailing structured dialogue, identification of insights, grouping of insights into themes, and the creation of narrative statements about each theme. Content analysis was carried out by the researchers, working with the collected insights and narrative statements from all four workshops. Study participants were selected from the non-urban population of Nova Scotia. The 46 caregivers who participated included Blacks, Aboriginals, and Acadians. Although the workshops were open to male caregivers, all of the participants were women, half of whom were between the ages of 31 and 50, and roughly one-third of whom were between 51 and 65. A few participants were over 65, and one was under 31 years old. The majority of the participants described themselves as being on duty 24 hours a day, seven days a week. Fifteen percent told us they provided 24-hour care “with no relief” and 63% said they did so with “occasional relief”. The ages of the people they cared for range from four years old to nearly one hundred. While some have been providing care for only a few months, others have been doing so for as long as 40 years. The average length of time that had been spent providing care was 7.4 years. Many of these caregivers have given up employment in order to provide care. Fewer than one-quarter have paid employment. Close to half of those who were not currently employed reported that they had left a paying job or changed jobs because of caregiving responsibilities. Four common themes emerged from caregivers’ collective insights into their stories:
Additional themes were also significant, although not as important for these caregivers: the impact of caregiving on other family members; the positive aspects of caregiving; community responses to recipients of care; transportation in rural Nova Scotia; and making caregivers’ voices heard. Participants expressed frustration and dissatisfaction with the current support available from the Nova Scotia government, service providers, families, and communities. They felt that the government did not keep the promise it made to provide comprehensive community care when closing local hospitals. According to these caregivers, the shift from institutional to community care in rural Nova Scotia must be accompanied by a commensurate transfer of resources so that services become comparable to the best available in urban centres. More support services, better matched with caregivers’ actual needs and the needs of those they care for, as well as information on how they can provide care more effectively are needed. These caregivers spoke candidly about the considerable burden of responsibility associated with caregiving. Above all, they expressed a need for more respite or relief time to care for themselves, so that they can maintain their own health to carry out their caregiving role and contribute to their communities. The caregivers who participated in this study have four critical messages for policy makers:
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