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

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Title: Exploring the issues that influence how people with rare neurological conditions engage in physical activity.
Authors: Buscemi, Valentina (AUTHOR), Boaz, Annette (AUTHOR), Dawes, Helen (AUTHOR), Jaki, Thomas (AUTHOR), Jones, Fiona (AUTHOR), Marsden, Jonathan (AUTHOR), Paul, Lorna (AUTHOR), Playle, Rebecca (AUTHOR), Randell, Elizabeth (AUTHOR), Robling, Michael (AUTHOR), Rochester, Lynn (AUTHOR), Busse, Monica (AUTHOR), Ramdharry, Gita (AUTHOR)
Source: Disability & Rehabilitation. Jun2024, Vol. 46 Issue 13, p2789-2798. 10p.
Subjects: Interprofessional relations, Research funding, Rare diseases, Content analysis, Descriptive statistics, Neurological disorders, Surveys, Thematic analysis, Attitudes of medical personnel, Stakeholder analysis, Data analysis software, Patients' attitudes, Caregiver attitudes
Abstract: 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. 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). 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. 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. People living with rare neurological conditions experience barriers to engaging in physical activity, with some common to more prevalent neurological diseases, e.g. access and facilities, but some notable differences due to the rarity of the condition For people living with rare neurological conditions, and their carers, there is a lack of knowledge on safe and appropriate engagement in physical activity Increasing the knowledge of health and exercise professionals may improve how they support people with rare neurological disease to engage with physical activity. Evidence based resources and recommendations for people living with rare neurological conditions, and professionals working with them, may facilitate engagement in physical activity [ABSTRACT FROM AUTHOR]
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Exploring the issues that influence how people with rare neurological conditions engage in physical activity.
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  Data: <searchLink fieldCode="AR" term="%22Buscemi%2C+Valentina%22">Buscemi, Valentina</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Boaz%2C+Annette%22">Boaz, Annette</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Dawes%2C+Helen%22">Dawes, Helen</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jaki%2C+Thomas%22">Jaki, Thomas</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jones%2C+Fiona%22">Jones, Fiona</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Marsden%2C+Jonathan%22">Marsden, Jonathan</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Paul%2C+Lorna%22">Paul, Lorna</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Playle%2C+Rebecca%22">Playle, Rebecca</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Randell%2C+Elizabeth%22">Randell, Elizabeth</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Robling%2C+Michael%22">Robling, Michael</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Rochester%2C+Lynn%22">Rochester, Lynn</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Busse%2C+Monica%22">Busse, Monica</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ramdharry%2C+Gita%22">Ramdharry, Gita</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Disability+%26+Rehabilitation%22">Disability & Rehabilitation</searchLink>. Jun2024, Vol. 46 Issue 13, p2789-2798. 10p.
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  Data: 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. 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). 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. 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. People living with rare neurological conditions experience barriers to engaging in physical activity, with some common to more prevalent neurological diseases, e.g. access and facilities, but some notable differences due to the rarity of the condition For people living with rare neurological conditions, and their carers, there is a lack of knowledge on safe and appropriate engagement in physical activity Increasing the knowledge of health and exercise professionals may improve how they support people with rare neurological disease to engage with physical activity. Evidence based resources and recommendations for people living with rare neurological conditions, and professionals working with them, may facilitate engagement in physical activity [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=177963881
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      – Type: doi
        Value: 10.1080/09638288.2023.2230128
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      – Code: eng
        Text: English
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        PageCount: 10
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    Subjects:
      – SubjectFull: Interprofessional relations
        Type: general
      – SubjectFull: Research funding
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      – SubjectFull: Rare diseases
        Type: general
      – SubjectFull: Content analysis
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Neurological disorders
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      – SubjectFull: Surveys
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Attitudes of medical personnel
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      – SubjectFull: Data analysis software
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      – SubjectFull: Patients' attitudes
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      – SubjectFull: Caregiver attitudes
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      – TitleFull: Exploring the issues that influence how people with rare neurological conditions engage in physical activity.
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              Text: Jun2024
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