title: Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents.
abstract: OBJECTIVE
  To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents.
  
  
  METHODS
  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.
  
  
  METHODS
  The study was conducted in community settings.
  
  
  METHODS
  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.
authors.affiliation: Council for Disabled Children, National Children's Bureau, London, UK.
authors.forename: Amanda
authors.initials: A
authors.lastname: Allard
authors.forename: Andrew
authors.initials: A
authors.lastname: Fellowes
authors.forename: Valerie
authors.initials: V
authors.lastname: Shilling
authors.forename: Astrid
authors.initials: A
authors.lastname: Janssens
authors.forename: Bryony
authors.initials: B
authors.lastname: Beresford
authors.forename: Christopher
authors.initials: C
authors.lastname: Morris
mesh_terms: D000293:Adolescent; D002648:Child; D003142:Communication; D019988:Children with Disabilities; D006233:Persons with Disabilities / Q000523:psychology*; D004644:Emotions; D017144:Focus Groups; D006305:Health Status Indicators; D006801:Humans; D057187:Independent Living; D007398:Interpersonal Relations; D007407:Interviews as Topic; D009422:Nervous System Diseases / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012648:Self Care; D058992:Social Participation; D006113:United Kingdom; D055815:Young Adult
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