Caring for the Carers: Family caregivers for those at the end of life

by Catherine Dyer
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Caregiving, Carers, End of Life, Critical Gerontology

In Canada, it is estimated that family caregivers provide 80 – 90% of all care delivered to individuals in the home settings (Stajduhar et al., 2010), with the majority of the caregiving falling on the shoulders of a female family member. This unpaid care is saving Canadian and American healthcare systems approximately $30 billion and $350 billion per year respectively (Bastawrous, 2013). As our populations age it is inevitable that there will be substantial growth in the demands on health and social services. It is not difficult to imagine the effects this phenomenon will have on palliative care services and how many more family members in our communities will be providing care for aging relatives with chronic or terminal diseases. Is our society able to recognize that family caregivers require continued support? What does the future hold in terms of compensating caregivers for their work? Systemic mechanisms need to be addressed and put into place to meet the needs of family caregivers.

The importance of the family caregiving role has garnered significant attention from gerontological, nursing, and health services research, with family caregiving at the end of life a top international research priority, particularly as the palliative care mandate stipulates support for both the patients who have advanced life-threatening incurable disease and their families. Family caregivers in the palliative, hospice and bereavement phrases of their caregiving role are at an increased risk for physical and mental morbidity, and it has been reported that family caregiver’s psychological burden repeatedly exceeds that of the critically ill patient (Williams & McCorkle, 2011). Yet, existing interventions on behalf of family caregivers are falling short of what is known in the literature, with interventions often failing to grasp the intricacies of the family caregiver role—resulting in a generic blanket approach.

In my research project I will investigate the apparent shortfall between what should happen, as far as quality of care is concerned within the family centered palliative care system to those in the family caregiver role, and what in reality does happen. My reasons for choosing this topic are both personal and professional, I have had first-hand experience as a family caregiver to a terminal patient, volunteered within a palliative care unit and been exposed to family caregivers’ personal stories, and lastly I was trained as a caregiver coach to family caregivers of palliative patients within a research intervention project. Through these experiences I was able to fully appreciate the extent that society and the health systems depend on the ‘invisible work’ performed by family caregivers. My research will thus examine the family caregiver role with a focus on preparatory education provision, the interrelationship between the individual and the health systems, support mechanisms available before, during and after their caregiving experience and recommendations family caregivers have for systemic changes.

My hope is that the research will be used to help increase capacity within our health and service facilities and empower family caregivers within their role. After all the family caregiving role is increasingly moving from the sphere of an if situation for Canadians, to a matter of when one becomes a caregiver (Drummond, 2010). Therefore, Canadian society will need to acknowledge and implement policies that ensures family caregivers are recognized, given a voice within society and are provided with financial security for the work they do.


Bastawrous, M. (2013). Caregiver burden – A critical discussion. International Journal of Nursing Studies, 50(3), 431- 441

Drummond, S. L. (2010). Supporting Canadian Caregivers Current and Future Policy Directions,University of Toronto, Canada. UMI Dissertations Publishing.

Stajduhar, K.I., Funk. L., Toye, C., Grande, G.E., Aoun, S. & Todd C.T. (2010). Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24(6), 573-93.

Williams, A.L. & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice and  bereavement phases: a review of the descriptive psychosocial literature. Journal of Palliative & Supportive Care, 9(3), 315-25.


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