Caring for the caregiver: An exploration of the experiences of caregivers of adults with mental illness

Abstract

Based on the 2017 Canadian Survey on Disability, more than two million Canadians 15 years of age or older are living with a mental health-related disability. Subsequently, access and delivery of mental health services in Canada, more specifically in Ontario, have shifted to a shared responsibility between healthcare providers and the individual client's informal caregivers. Unfortunately, the role of the caregiver has been historically underappreciated and undervalued, leaving caregivers with few supports to help them manage and cope with caregiving responsibilities. This paper reports the results of a qualitative descriptive study that explored the lived experiences of caregivers who are providing care to an adult family member who is living with a mental illness in Windsor-Essex County, Ontario. Twenty-one participants volunteered to be interviewed for this study via telephone or online on Microsoft Teams. All interviews were audio-recorded and transcribed verbatim. Data analysis followed Braun and Clarke's framework for reflexive thematic analysis. Four themes were identified from the 21 interviews: 1) personal impact of being a caregiver, 2) stress associated with navigating the system, 3) complexity of the caregiving burden, and 4) caregivers as buffers of the failings of the system. Results demonstrate that caregiving is a stressful responsibility and, without sufficient supports, can impair the wellbeing of both the caregiver and the care recipient. As such, apart from recognizing informal caregivers as partners in the care of persons living with mental illness in the community, there is also a need to acknowledge that they, too, require supports to ensure that their health and well-being are not compromised in providing care to their loved one(s).