Understanding the priorities in life beyond the first year after stroke: Qualitative findings and non-participant observations of stroke survivors and service providers

Abstract

ABSTRACT Long-term unmet health needs are associated with a lower quality of life in stroke survivors. Survivors’ priorities in living their lives and health professionals’ recognition influence survivors’ perceptions of their needs. From the perspectives of survivors and service providers, this study investigated survivors’ long-term priorities for continuing their lives after stroke. A qualitative study was conducted with a convenience sample of 40 stroke survivors and a purposive sample of 11 providers who had worked with survivors for more than five years and were currently managers of community-based stroke care services or leaders of volunteer groups. Following the survivors’ interviews, non-participant observations of a random day’s activities were conducted. Data were transcribed verbatim. Survivors’ and providers’ data were analyzed separately and then together thematically. Five themes emerged: healing the mind in order to move forward, optimizing adaptations and maintaining physical function, living a safe and cost-effective life, returning to work, and giving back to society. Community-based services can be improved to offer more at-home, technology-supported psychological and self-management interventions, barrier-free and one-stop services, and opportunities for employment and volunteering. It would be worthwhile to invest in conducting public education to promote social inclusion and strengthening collaboration between academic and community organizations.