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

Hartley, SE, Goodwin, PC and Goldbart, J (2011) Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders. Disability and Rehabilitation, 33 (12). pp. 1022-1032. ISSN 1464-5165

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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.

Item Type:	Article
Peer-reviewed:	Yes
Date Deposited:	15 Sep 2016 11:56
Publisher:	Taylor & Francis
Additional Information:	This is an Author Final Copy of a paper accepted for publication in Disability and Rehabilitation, published by and copyright Taylor & Francis.
Divisions:	Faculties > Health and Education
Subject terms:	Science & Technology, Life Sciences & Biomedicine, Rehabilitation, REHABILITATION, SCI, REHABILITATION, SSCI, Neuromuscular disease, long-term conditions, holistic care, wellbeing, QUALITY-OF-LIFE, MUSCULAR-DYSTROPHY, HEALTH-CARE, DISABILITY, ILLNESS, REHABILITATION, INDIVIDUALS, POPULATION, ADOLESCENT, PROVISION, Neuromuscular disease, long-term conditions, holistic care, wellbeing, Humans, Neuromuscular Diseases, Holistic Health, Long-Term Care, Rehabilitation, Vocational, Self Care, Health Knowledge, Attitudes, Practice, Health Behavior, Motivation, Self Efficacy, Social Values, Models, Organizational, Qualitative Research, Vocational Education, Computer-Assisted Instruction, Adult, Rehabilitation Centers, Patient Education as Topic, Adult, Computer-Assisted Instruction, Health Behavior, Health Knowledge, Attitudes, Practice, Holistic Health, Humans, Long-Term Care, Models, Organizational, Motivation, Neuromuscular Diseases, Patient Education as Topic, Qualitative Research, Rehabilitation Centers, Rehabilitation, Vocational, Self Care, Self Efficacy, Social Values, Vocational Education, Rehabilitation, 11 Medical And Health Sciences
URI:	https://e-space.mmu.ac.uk/id/eprint/27
DOI:	https://doi.org/10.3109/09638288.2010.520812
ISSN	1464-5165

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