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Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents
  1. Amanda Allard1,
  2. Andrew Fellowes1,
  3. Valerie Shilling2,
  4. Astrid Janssens2,
  5. Bryony Beresford3,
  6. Christopher Morris2
  1. 1Council for Disabled Children, National Children's Bureau, London, UK
  2. 2Peninsula Cerebra Research Unit (PenCRU) & PenCLAHRC, University of Exeter Medical School, Exeter, UK
  3. 3Social Policy Research Unit, University of York, York, UK
  1. Correspondence to Dr Christopher Morris; christopher.morris{at}exeter.ac.uk

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.

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/

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