Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders

Abstract

Purpose. The aim of this research is to gain an insight into adults with neuromuscular disorders' experiences of attendance at a specialised, voluntary sector, Neuromuscular Centre and explore its value to these adults who attend for treatment, education or employment.

Method. This study was qualitative in design. In-depth interviews were conducted with nine self-selected participants, recruited from the population of adults with neuromuscular disorders who attended the Neuromuscular Centre. Interviews were transcribed verbatim and thematically analysed. Thematic networks were utilised to aid interpretation.

Results. Participants saw the benefit of specialist input to remain mobile and independent for longer. The Centre created a culture of understanding and empathy which facilitated mutual support and self-acceptance. Opportunities for employment and education offered a sense of purpose. Sharing experiences developed self-knowledge and the ability to self-manage their condition.

Conclusion. Attendance at this voluntary sector Neuromuscular Centre provided physical, psychosocial and economic benefits. The Neuromuscular Centre through its holistic approach offers a unique model for rehabilitation of adults with neuromuscular disorders. As an enterprise, satellite centres adopting the ethos of the Centre could be created, which could potentially help to redress the inequalities in health care for adults with neuromuscular disorders.

Keywords:

• Neuromuscular disease
• long-term conditions
• holistic care
• wellbeing

Acknowledgements

The authors would like to thank staff and participants from the NMC who gave up their time and provided support to carry out this research.