The lived experience of informal caregivers of the terminally ill in south-central rural Manitoba

Abstract

In the Central Regional Health Authority of Manitoba there are approximately 190 deaths per year from cancer alone (Manitoba Centre for Health Policy, 2002). Many of these persons choose to be cared for at home in the final days, weeks or months leading up to their death. Little was known about the personal experiences of the informal caregivers of the terminally ill (usually family members) in the community. Even less was known about the effect of living in a rural location on this experience. This qualitative study utilized an ethnographic methodology to gain insight into the experience of being a caregiver in rural southern Manitoba. Purposive sampling was used to obtain a sample of nine informal caregivers of the terminally ill in the Central Regional Health Authority of Manitoba. Semi-structured open-ended interviews were tape-recorded and transcribed providing the data. The theoretical framework guiding this study is the Framework for Understanding the Primary Caregiver Experience (Meyers & Gray, 2001). The findings fit into two general themes; The Work of Caregiving and Coping and Coming Through the Experience. The struggles and challenges of the experience, the ways and means the caregivers found to cope, as well as the joys and rewards of the experience are framed within the rural context under these two main themes. The caregivers' stories add to previous information regarding informal caregivers with the additional perspective arising from living in a rural area. Practical recommendations for health care providers, health institutions, programs and policy makers are presented, as are the implications for education and research.