Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens

Abstract

Background Informal caregivers (ICs) providing care for those at the end-of-life face physical, psycho-social, emotional, and/or financial challenges. However, there is a paucity of research towards the effectiveness of available interventions for this vulnerable population. The purpose of this scoping review was to investigate the availability and efficacy of interventions for ICs providing hospice and palliative/end-of-life care in Canada. Methods Using Arksey and O’Malley's five step framework, a scoping review was conducted in the spring of 2020. Key electronic healthcare, social sciences, and grey literature databases were searched. Relevant publications from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis was conducted to summarize all key findings. Results Initial searches yielded 145 results out of which 114 distinct articles were obtained. De-duplication and final screening yielded 28 sources which met inclusion criteria (22 peer-reviewed articles [78%] and 6 grey sources [22%]; 12 qualitative papers [42%]). Through thematic content analysis, four major themes were identified: [1] Direct financial support, [2] Direct psycho-sociospiritual support, [3] Indirect patient information provision/education, and [4] Indirect patient support. Conclusions Healthcare practitioners should provide information on patient care and financial aid to ICs. Policies should aim to expand eligibility for and access to financial aid, in particular the Compassionate Care Benefits (CCB). Future research should focus on exploring other interventions, such as physical activities, to better support this vulnerable population. The results from this review will help inform and improve the well-being of ICs providing end-of-life care in Canada and beyond.

Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members’ Perspective

“…[18][19][20][21] Therefore, many family caregivers also have health care needs, such as practical and emotional support for themselves, as well as information needs. [21][22][23] These findings suggest that when caring for patients with both terminal cancer and dementia, the caregiver burden may be higher because of these two serious illnesses. However, the degree of caregiver burden associated with dementia and terminal cancer has not been explored.…”

“…18–21 Therefore, many family caregivers also have health care needs, such as practical and emotional support for themselves, as well as information needs. 21–23…”

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“…3,9 Given the complex needs and high-intensity care at EOL, it is not surprising that informal caregivers frequently experience physical, psychological, emotional, social, spiritual, and/or financial stress. 1,3,4,[8][9][10][11] A unique subset of informal caregivers are nurses, who find themselves providing care in both their family lives and in their professional lives, a phenomenon known as double-duty caregiving (DDC). 4,6 It can be argued that the experiences of all employed informal caregivers may be similar, such as juggling multiple roles and using management strategies to cope with the stress of engaging in paid and unpaid work.…”

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