An evaluation study of caregiver perceptions of the Ontario’s Health Links program

Introduction: In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers’ perceptions of the program in relation to HL’s guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers’ perceptions of the impact of HL on themselves and their care recipient? Methods: This study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis. Results: Twenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient’s care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program’s home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider continuity provided caregiver relief and patient support: A lack of continuity was related to changes in care coordinators and weekend staff and attrition. Conclusions: Caregivers of HL patients appreciated patient- and family-centred, accessible, consistent, coordinated and team-based approaches in care. Providers and decision-makers are urged to ensure that programs aimed at high system users address these core concepts while addressing caregivers’ needs.