BMJ Open-2014-Allard-.pdf (2.03 MB)
Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents
journal contribution
posted on 2023-06-09, 02:29 authored by Amanda Allard, Andrea Fellowes, Valerie ShillingValerie Shilling, Astrid Janssens, Bryony Beresford, Christopher MorrisOBJECTIVES: 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.
History
Publication status
- Published
File Version
- Published version
Journal
BMJ OpenISSN
2044-6055Publisher
BMJ Publishing GroupExternal DOI
Issue
4Volume
4Article number
e004611Department affiliated with
- Sussex Health Outcomes Research & Education in Cancer (SHORE-C) Publications
Full text available
- Yes
Peer reviewed?
- Yes
Legacy Posted Date
2016-08-15First Open Access (FOA) Date
2016-08-15First Compliant Deposit (FCD) Date
2016-08-12Usage metrics
Categories
No categories selectedKeywords
AdolescentChildCommunicationDisabled ChildrenDisabled Persons/*psychologyEmotionsFocus GroupsGreat Britain*Health Status IndicatorsHumansIndependent LivingInterpersonal RelationsInterviews as TopicNervous System Diseases/*psychologyParents/*psychologyQualitative ResearchSelf CareSocial ParticipationYoung Adult
Licence
Exports
RefWorks
BibTeX
Ref. manager
Endnote
DataCite
NLM
DC