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.
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.
| Original language | English |
|---|---|
| Article number | 004611 |
| Number of pages | 11 |
| Journal | BMJ Open |
| Volume | 4 |
| Issue number | 4 |
| DOIs | |
| Publication status | Published - 19 Apr 2014 |
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/Keywords
- children
- young people
- disability
- neurodisability
- health
- health outcomes
- parents
- families
- health services
