Abstract

Purpose: There is a paucity of research into self-management strategies employed by stroke survivors outside of formal rehabilitation. This study aimed to explore stroke survivors’ experiences of, and strategies for self-managing their severely impaired upper limb.

Materials and methods: English-speaking stroke survivors whose upper limb had been non-functional at 3 months post-stroke took part in interviews (n = 16), a focus group (n = 6) and a survey (n = 20). Quantitative data were analysed descriptively. Qualitative data were analysed through thematic framework analysis using NVivo^© software.

Results: Participants’ median (range) age group was 50–59 years (30–39, 70+). Median (range) time post-stroke was 39 months (4 months, 46 years). The overarching theme across the data was “choosing and expanding.” Participants enacted professionally driven management strategies for their affected arm, and then chose to continue with what worked for them. Strategies were expanded through self-discovery and interaction with peers. There were sadness and frustration at the loss of arm function, but also satisfaction and self-confidence when progress was being made. Participants described an attitude of not giving up and remaining hopeful.

Conclusions: These findings extend our understanding about how individuals manage their severely impaired upper limb and can be used to inform a novel stroke self-management intervention.

Implications for rehabilitation

• Stroke survivors’ experiences of managing the severely affected upper limb may inform rehabilitation practice to foster self-management.

• Rehabilitation professionals may actively support stroke survivors in choosing from, and expanding on professionals’ advice and guidance.

• Maintaining a positive and hopeful outlook is important to many stroke survivors. Professionals should be mindful of the potential impact of their interactions and negative predictions.

• Stroke survivors’ experiences of managing the severely affected upper limb may inform the development of a novel tailored self-management intervention.