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Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents

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Publication details

JournalBMJ Open
DatePublished - 19 Apr 2014
Issue number4
Volume4
Number of pages11
Original languageEnglish

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.

Bibliographical note

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/

    Research areas

  • children, young people, disability, neurodisability, health, health outcomes, parents, families, health services

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