Abstract
Aims: Motor neurone disease (MND) is an incurable, progressive and fatal neurodegenerative disease. The focus of management is on achieving the best quality of life for patients and their families. Peer support has been proposed as an effective means of coping with a stressful life experience although data on efficacy are mixed. Methods: The first (preliminary) study on the effectiveness of six-week face-to-face peer support program (n = 7) in MND was studied through a pre-post design. Findings: Results showed that despite high participant satisfaction and a trend towards reduced psychological distress (depression, anxiety and stress) six-weeks post programme, psychological distress had worsened again at 12 months, while quality of life, coping strategies and caregiver burden remained unchanged. Conclusions: Although participant numbers were too small to be conclusive, it is suggested that group face-to-face peer support is a feasible form of support in MND and should be considered even in patients who are severely disabled and/or have severe verbal communication (dysarthria).
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