Managing the severely impaired arm after stroke: a mixed-methods study with qualitative emphasis

Abstract

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 was 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.

Characteristics of Future Models of Integrated Outpatient Care

“…Multiple techniques are used to maximize patient/family engagement in self-management, including increased support from clinicians [35], education about the person’s disease and available self-management resources [28,29,30,31,32,39], prompts to increase shared decision-making with the clinicians [41], and customizing the available options [42,43].…”