Objectives: Collaborative goal setting is an integral component of treatment planning for adults with neuromuscular disorders (NMD). However, due to the unique challenges for these individuals, identifying a process for goal setting that is advantageous for all can be problematic. This study aimed to evaluate collaborative goal setting at a specialist NMD centre, as reported by service users attending physiotherapy. It also aimed to generate discussion about collaborative goal setting and the practice of goal setting in adults with NMD in order to inform future practice.
Setting: Specialist NMD community-based centre in the UK.
Participants: One hundred and four adults with NMD who attended the centre.
Design: Cross-sectional survey. Thematic and content analyses of goals set were performed alongside demographic data collection.
Results: One hundred and four patients (34 females) with a range of neuromuscular conditions - including Becker, facioscapularhumeral, limb girdle, Duchenne and myotonic muscular dystrophies - completed the survey. Thirty-six respondents (37%) stated that they had set goals with the physiotherapist, whilst 62 (63%) stated that they had not set goals with the physiotherapist. Respondents' goals were grouped into four themes: symptom management, maintenance, improving physical condition, and learning to live with the condition.
Conclusions: Readiness to take part in collaborative goal setting is unique to each individual. Physiotherapists need to be skilful in supporting adults with NMD through the goal-setting process until they are capable of sharing responsibility. Setting personal goals to improve emotional well-being may help to develop confidence to take more control of their situation, hence facilitating skills in self-management.
Keywords: Goal setting; Long-term conditions; Neuromuscular disorders; Self-management.
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