A Qualitative Study of the Health-Related Quality of Life of Disabled Children

Autor/inn/en	Young, Bridget; Rice, Helen; Dixon-Woods, Mary; Colver, Allan F.; Parkinson, Kathryn N.
Titel	A Qualitative Study of the Health-Related Quality of Life of Disabled Children
Quelle	In: Developmental Medicine & Child Neurology, 49 (2007) 9, S.660-665 (6 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	0012-1622
DOI	10.1111/j.1469-8749.2007.00660.x
Schlagwörter	Grounded Theory; Recreational Activities; Family Life; Quality of Life; Cerebral Palsy; Classification; Educational Environment; Disabilities; Children; Test Validity; Screening Tests; Early Adolescents; Parent Attitudes; Parents; Attitude Measures; Interpersonal Relationship; Daily Living Skills; Environmental Influences; Child Health; Family Relationship; Social Justice; Neighborhoods; Pain; Accessibility (for Disabled); Interviews + Suchen Sie Ihr Suchwort? Freizeitgestaltung; Lebensqualität; Hirnlähmung; Classification system; Klassifikation; Klassifikationssystem; Lernumgebung; Pädagogische Umwelt; Schulumwelt; Handicap; Behinderung; Child; Kind; Kinder; Testvalidität; Screening-Verfahren; Elternverhalten; Eltern; Interpersonal relation; Interpersonal relations; Interpersonelle Beziehung; Zwischenmenschliche Beziehung; Alltagsfertigkeit; Environmental influence; Umwelteinfluss; Soziale Gerechtigkeit; Neighbourhoods; Nachbarschaft; Schmerz; Accessibility; Zugänglichkeit; Interviewing; Interviewtechnik
Abstract	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. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2017/4/10