Benefits and barriers to engagement of mental health caregivers in advisory roles: Results from a cross-sectional survey.

Abstract

Mental health institutions and community organizations have had difficulty recruiting patients and caregivers onto their Patient, Family, and Community Advisory Committees (PFACs). Previous research has focused on barriers and enablers of engaging patients and caregivers who have advisory experience. This study acknowledges the experiential difference between patients and caregivers by focusing only on caregivers; further, we compare the barriers and enablers between advising versus non-advising caregivers of loved ones with mental illness. Data from a cross-sectional survey codesigned by researchers, staff, clients, and caregiver affiliated with a tertiary mental health center were completed by n = 84 caregivers (n = 40 past/current PFAC advising caregivers; n = 44 non-advising caregivers). Caregivers were disproportionately female and late middle-aged. Advising and non-advising caregivers differed on employment status. There were no differences of the demographics of their care-recipients. More non-advising caregivers reported being hindered from PFAC engagement by family-related duties and interpersonal demands. Finally, more advising caregivers considered being publicly acknowledged as important. Advising and non-advising caregivers of loved ones with mental illness were similar in demographics and in reporting the enablers and hindrances that impact PFAC engagement. Nevertheless, our data highlights specific considerations that institutions/organizations should consider when recruiting and retaining caregivers on PFACs. This project was led by a caregiver advisor to address a need she saw in the community. The surveys were codesigned by a team of two caregivers, one patient, and one researcher. The surveys were reviewed by a group of five caregivers external to the project. The results of the surveys were discussed with two caregivers involved directly with the project.