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

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. 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: 06 Mar 2017 09:20
URI: http://sro.sussex.ac.uk/id/eprint/62342

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