“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Abstract

Background Stepping into the role of an unpaid caregiver to offer help for a family member or friend is often considered a natural expectation of partners or family members. In Canada, the contributions of caregivers are substantial in healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We provide some examples of system-level policy and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations. We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team.

Quality of life and needs in caregivers: results from the prospective multicentric open-label randomized study of Informal Caregivers of Elderly patients (ICE study).

“…Caregivers play a critical role and assume in turn several tasks in disease management of patients with cancer (38). Earlier and better recognition of caregiver involvement in patient care needs to be encouraged.…”

Quality of Life and Needs in Informal Caregivers of Elderly (ICE): Results From a Prospective Multicentric Open-label French Study

“…(25) Caregivers play a critical role in cancer patient disease management and control and assume in turn different role. (30) Earlier and better recognition of their contributory participation in patient care need to be encouraged. Further issues had arisen regarding the growing recognition of caregiver speci c needs, and the most appropriate assistance to provide to caregivers.…”