Access and Use of Formal Health and Social Services by Caregivers of Stroke Survivors: An Interpretive Description Study

Abstract

Background: Evidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting the need for ongoing care and support. However, little is known about caregivers’ use of formally funded health and social services or the factors influencing their access to and use of these services. Purpose: To increase understanding of: (a) the context of providing care for a stroke survivor; (b) the experiences of stroke caregivers in accessing and using formal health and social services; and (c) the factors that influence stroke caregivers’ use of formal health and social services, from the perspective of stroke caregivers and healthcare providers. Methods: A qualitative study was conducted using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years ago and healthcare providers who support caregivers and stroke survivors. Constant comparison was used to identify codes and develop key thematic constructs. Results: Interviews were conducted with 22 stroke caregivers at an average 30 months post-stroke and 18 health providers. Key findings include: (a) few caregivers use services, (b) caregivers face challenges accessing services, (c) services used by stroke survivors benefit caregivers, and (d) factors influencing stroke caregivers’ use of services include: adequacy of social support networks, finances and transportation, and trust in leaving the stroke survivor under the care of health providers. Conclusion: Stroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.