Allard, Amanda, Fellowes, Andrea, Shilling, Valerie, Janssens, Astrid, Beresford, Bryony and Morris, Christopher (2014) Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents. BMJ Open, 4 (4). e004611. ISSN 2044-6055

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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.

Item Type:	Article
Keywords:	Adolescent, Child, Communication, Disabled Children, Disabled Persons/*psychology, Emotions, Focus Groups, Great Britain, *Health Status Indicators, Humans, Independent Living, Interpersonal Relations, Interviews as Topic, Nervous System Diseases/*psychology, Parents/*psychology, Qualitative Research, Self Care, Social Participation, Young Adult
Schools and Departments:	Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Subjects:	R Medicine > RJ Pediatrics R Medicine > RJ Pediatrics > RJ0101 Child health. Child health services
Depositing User:	Valerie Shilling
Date Deposited:	15 Aug 2016 06:47
Last Modified:	24 May 2021 09:30
URI:	http://sro.sussex.ac.uk/id/eprint/62342

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