Shifting the Burden: The Impact of Home-Based Palliative Care on Family Caregivers Living in Rural Areas

Abstract

<p>Changes to the delivery of health care have resulted in increased reliance on family members to provide care in the home. This type of care is changing, becoming more complex and labour-intensive, and encompassing the provision of palliative and end-of-life (P/EOL) care. The demands of this care can be overwhelming, although access to support can mitigate burden and enhance the experience. In rural areas, access to services is fragmented and under-funded and the effect this has on family caregivers (FCGs) is not well-understood. Given the ageing population, the prevalence and necessity of P/EOL family caregiving is not going to abate. This research examined how family caregivers living in northern Ontario managed caring for their terminally-ill loved-ones in the home and how this affected their self-assessed health. A multiple case study design was used to explore the experiences. Data consisted primarily of semi-structured interviews, direct observations and documents. Conventional content analysis was used to develop themes from the data. The results revealed that FCGs in this area have limited access to support, through both the health care system and informal networks, and as such, experience high degrees of self-sacrifice and caregiver burden. A team approach to care with greater emphasis on the needs of FCGs is essential to maintaining caregiver health and well-being so that they may assist their loved-ones to die in their homes.</p>