Allard, Amanda, Fellowes, Andrew, Shilling, Valerie et al. (3 more authors) (2014) Key health outcomes for children and young people with neurodisability:qualitative research with young people and parents. BMJ Open. 004611. ISSN 2044-6055
Abstract
Objectives: To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. Design: Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach, the International Classification of Functioning, Disability and Health (ICF) provided a theoretical foundation. Setting: The study was conducted in community settings. Participants: Participants were 54 children and young people with neurodisability: 50 participated in focus groups, and 4 in interviews, 53 parents participated: 47 in focus groups and 6 in interviews. Children/young people and parents were recruited through different networks, and were not related. Results: Children/young people and parents viewed health outcomes as inter-related. Achievement in some outcomes appeared valued to the extent that it enabled or supported more valued domains of health. Health outcomes prioritised by both young people and parents were: communication, mobility, pain, self-care, temperament, interpersonal relationships and interactions, community and social life, emotional well-being and gaining independence/future aspirations. Parents also highlighted their child's sleep, behaviour and/or safety. Conclusions: Those responsible for health services for children/young people with neurodisability should take account of the aspects of health identified by families. The aspects of health identified in this study provide a basis for selecting appropriate health indicators and outcome measures.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/ |
Keywords: | children,young people,disability,neurodisability,health,health outcomes,parents,families,health services |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Research Groups (York) > Social Policy Research Unit (York) |
Depositing User: | Pure (York) |
Date Deposited: | 09 May 2014 14:00 |
Last Modified: | 16 Oct 2024 12:24 |
Published Version: | https://doi.org/10.1136/bmjopen-2013-004611 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1136/bmjopen-2013-004611 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:78882 |