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A qualitative study of the health-related quality of life of disabled children

Lookup NU author(s): Helen Rice, Emeritus Professor Allan ColverORCiD, Dr Kathryn Parkinson


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This qualitative study investigated what disabled children thought most important in their lives and examined how well their priorities are represented in KIDSCREEN, a generic health-related quality of life (HRQoL) instrument. Participants were a subgroup of families who had previously taken part in a study of quality of life and participation in children with cerebral palsy (CP) using KIDSCREEN. This subgroup was sampled purposively, using children's scores on KIDSCREEN and demographic characteristics. Twenty-eight children (15 males, 13 females; age range 8y 3mo-13y 5mo) and 35 parents were interviewed. Ten children were at Gross Motor Function Classification System Level I, 15 were at Levels II or III, and three were at Levels IV or V. Eleven children had unilateral spastic CP, 16 had bilateral spastic C P, and one child had dyskinetic C P. Interviews were audio-recorded and transcribed verbatim. The analysis was based on the constant comparative method and focused largely on the children's data, though the parent data were drawn upon to illuminate the children's data. Four overarching areas of HRQoL were identified: social relationships; home and school environment; self and body; and recreational activities and resources. These generally mapped well to the dimensions and items in KIDSCREEN. The precedence children gave to environmental, social, interpersonal, health, and functional concerns corresponded well with the balance of these items in KIDSCREEN. However, children had some specific priority areas that were not represented in KIDSCREEN. These included: relationships with family members other than parents; inclusion and fairness; home life and neighbourhood; pain and discomfort; environmental accommodation of needs; and recreational resources other than finances and time. We recommend that further consideration be given to inclusion of these areas in the assessment of HRQoL of disabled children. © 2007 Blackwell Publishing Ltd.

Publication metadata

Author(s): Young B, Rice H, Dixon-Woods M, Colver AF, Parkinson KN

Publication type: Article

Publication status: Published

Journal: Developmental Medicine and Child Neurology

Year: 2007

Volume: 49

Issue: 9

Pages: 660-665

Print publication date: 01/09/2007

ISSN (print): 0012-1622

ISSN (electronic): 1469-8749

Publisher: Mac Keith Press


DOI: 10.1111/j.1469-8749.2007.00660.x

PubMed id: 17718821


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