Stroke survivors’ views on their priorities for upper-limb recovery and the availability of therapy services after stroke: a longitudinal, phenomenological study

Abstract

Purpose Forty percent of stroke survivors have a persistent lack of function in the upper limb, causing significant disability. Most personal-care tasks and meaningful activities require bi-manual function of both upper limbs. However, lower-limb mobility is often viewed as the priority in stroke services. Perspectives of stroke survivors on priorities for upper-limb recovery and therapy have not been investigated in detail. Therefore, this study aimed to explore their views. Materials and methods Thirteen stroke survivors each engaged in up to four semi-structured interviews over 18 months. A phenomenological approach guided the research. Results Three themes were identified. Priorities change on coming home: recovery of walking is a priority early after stroke but upper-limb recovery becomes equally important over time, particularly once living at home. Limited therapy services: therapy has a short duration, prioritizes lower-limb mobility, and is short-lived in the community; people feel abandoned by services. Active partners in recovery: stroke survivors want intermittent access to review and advice so they can be active partners with therapists to manage their upper-limb recovery. Conclusion Therapy services should recognize stroke survivors’ changing priorities and work with them as active partners in upper-limb recovery. Intermittent access to review and advice should be included in service design. Implications for rehabilitation Stroke survivors’ priorities may change over time from recovery of walking toward upper-limb recovery. Post-stroke services can be perceived as insufficient to meet the needs of stroke survivors who want to participate actively in rehabilitation of their upper limb. Stroke survivors may prefer services that are more flexible to provide regular review of their progress, access to guidance and support to self-manage their recovery.