Kulnik, S.T., Mohapatra, S., Gawned, S. and Jones, F. (2018) Beyond clinicians' predictions : adding value through an encouraging and empowering approach to stroke self-management. In: Upper Limb Stroke Rehabilitation Summer School; 19-21 Sep 2018, Leuven, Belgium. (Unpublished)

Abstract

Purpose: Research predicting degrees of upper limb recovery following stroke can inform rehabilitation practice and convey to the person with stroke what level of function to expect. But how can this deterministic practice be reconciled with an encouraging and empowering approach to stroke self-management - especially when the prediction is unfavourable? We draw on qualitative data from stroke survivors whose upper limb was non-functional 3 months after stroke, and who reflect on their experiences months and years later. Methods: Thirty-nine stroke survivors (age ranging from 20 to 80+ years, time post-stroke 6 months to 46 years) were purposively recruited to semi-structured interviews (n=15), a focus group (n=6) and an online survey (n=18). Data were analysed through thematic framework analysis using NVivo© software. Results: A strong theme emerged on the importance of maintaining a positive and hopeful outlook. Importantly, this represented a conscious attitude participants assumed towards their recovery. Also when participants experienced sadness, frustration or anger at the loss of their arm or lack of improvement, this was the mind-set they deliberately adopted and considered most helpful, in order to bolster resilience. Several participants described the negative impact when professionals predicted the arm would never improve, and such predictions were often rejected. Participants gave accounts of often unpredictable ways of managing their arm and unexpected outcomes. Conclusions: These findings offer a complementary perspective to prediction-based deterministic stroke rehabilitation practice, providing valuable insights of how self-management based on encouragement and empowerment can add value to patient-focused outcomes in the longer term.

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