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Exploring the issues that influence how people with rare neurological conditions engage in physical activity

Buscemi, Valentian, Boaz, Annette, Dawes, Helen, Jaki, Thomas, Jones, Fiona, Marsden, Jonathan, Paul, Lorna, Playle, Rebecca ORCID:, Randell, Elizabeth ORCID:, Robling, Michael ORCID:, Rochester, Lynn, Busse, Monica and Ramdharry, Gita 2023. Exploring the issues that influence how people with rare neurological conditions engage in physical activity. Disability and Rehabilitation 10.1080/09638288.2023.2230128
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[thumbnail of PARC physical activity survey_accepted 23.06.2023.pdf] PDF - Accepted Post-Print Version
Restricted to Repository staff only until 4 July 2024 due to copyright restrictions.
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Purpose People with rare neurological conditions (RNCs) struggle to achieve regular physical activity (PA). This study explored experiences of people with RNC engaging in PA, their carers, and health care professionals (HCPs) working with them. Materials & Methods We developed three surveys: for individuals living with RNCs, their carers, and HCPs working with them. Themes from interviews with RNC charity representatives were used to co-design questions, together with people living with RNCs, their representatives, and an expert panel. Surveys were disseminated via charity mailing lists, social media accounts, and professional networks (HCPs). Results We received 436 responses (225 people with RNC, 94 carers, 117 HCPs). Most respondents with RNC achieved some level of regular PA but needed motivation to maintain it. Many felt they lacked knowledge on starting and staying active, with scarce resources and support. Most HCP respondents worked in specialist services, and overwhelmingly agreed that people with RNC should be physically active, while acknowledging lack of evidence and resources. Conclusions We identified key barriers at environmental/organisational, interpersonal, and intrapersonal levels, highlighting a critical lack of support for people with RNC across UK health services. These factors can be targeted to increase engagement in PA.

Item Type: Article
Date Type: Published Online
Status: In Press
Schools: Medicine
Centre for Trials Research (CNTRR)
Publisher: Taylor & Francis
ISSN: 0963-8288
Date of First Compliant Deposit: 7 July 2023
Date of Acceptance: 23 June 2023
Last Modified: 17 Nov 2023 17:26

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