Article

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.

Langue : ANGLAIS