| dc.creator |
Allard, A |
|
| dc.creator |
Fellowes, A |
|
| dc.creator |
Shilling, V |
|
| dc.creator |
Janssens, A |
|
| dc.creator |
Beresford, B |
|
| dc.creator |
Morris, C |
|
| dc.date |
2016-05-06T08:29:51Z |
|
| dc.date |
2014-04-19 |
|
| dc.date |
2016-05-06T08:29:51Z |
|
| dc.identifier |
Vol. 4, No. 4, Article e004611 |
|
| dc.identifier |
10.1136/bmjopen-2013-004611 |
|
| dc.identifier |
bmjopen-2013-004611 |
|
| dc.identifier |
http://hdl.handle.net/10871/21406 |
|
| dc.identifier |
2044-6055 |
|
| dc.identifier |
2044-6055 |
|
| dc.identifier |
BMJ Open |
|
| dc.description |
Published online |
|
| dc.description |
Journal Article |
|
| dc.description |
Research Support, Non-U.S. Gov't |
|
| dc.description |
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. |
|
| dc.description |
This study was part of research funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (Project 10/2002/16 http://www.nets.nihr.ac.uk/projects/hsdr/10200216). The work also benefited support from NIHR Collaboration for Leadership in Applied Health Research and Care of the South West Peninsula (PenCLAHRC), and the charity Cerebra. The views and opinions expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health, or Cerebra. |
|
| dc.language |
en |
|
| dc.publisher |
BMJ Publishing Group |
|
| dc.relation |
http://www.ncbi.nlm.nih.gov/pubmed/24747792 |
|
| dc.relation |
http://bmjopen.bmj.com/content/4/4/e004611 |
|
| dc.rights |
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 noncommercially,
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. The final version of the article is available from BMJ via the DOI in this record. |
|
| dc.subject |
Adolescent |
|
| dc.subject |
Child |
|
| dc.subject |
Communication |
|
| dc.subject |
Disabled Children |
|
| dc.subject |
Disabled Persons |
|
| dc.subject |
Emotions |
|
| dc.subject |
Focus Groups |
|
| dc.subject |
Great Britain |
|
| dc.subject |
Health Status Indicators |
|
| dc.subject |
Humans |
|
| dc.subject |
Independent Living |
|
| dc.subject |
Interpersonal Relations |
|
| dc.subject |
Interviews as Topic |
|
| dc.subject |
Nervous System Diseases |
|
| dc.subject |
Parents |
|
| dc.subject |
Qualitative Research |
|
| dc.subject |
Self Care |
|
| dc.subject |
Social Participation |
|
| dc.subject |
Young Adult |
|
| dc.title |
Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents. |
|
| dc.type |
Article |
|