title: Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents.
abstract: Quality of life (QOL) has emerged over the past 20 years as an outcome for measuring the effectiveness of health-improvement interventions. The Cerebral Palsy Quality of Life Questionnaire for Children (CPQOL-Child) is well regarded and now integrated into research internationally. We describe the results of qualitative research, using grounded research in which we aimed to identify domains of QOL for adolescents with cerebral palsy (CP) from adolescent and parent perspectives to guide the development of an adolescent version. Seventeen adolescents (nine males, eight females) aged 13 to 18 years (mean=15.53 SD=1.74), with varying levels of impairment (Gross Motor Function Classification System levels I n=5, II n=2, III n=6, IV n=4, and V n=6) and their parents (n=23) participated in semi-structured interviews. Questions included: 'What do you think is important to your (child's) QOL?' and 'How does CP impact on your (child's) life?' Fifteen themes were identified, including domains related to health issues in adolescence, participation, education, specific CP-related issues (pain and discomfort, communication), family issues, practical issues (financial resources), and changes associated with adolescence (sexuality, independence). The composition of these QOL domains reflects the developmental concerns of adolescents with CP, adding to the views of children, and strongly supports adolescent participation in the development of self-reported well-being and QOL measures. Many of the domains are consistent with child reports of QOL and thus it appears feasible and valid to develop a measure that will be transferable across childhood and adolescence.
authors.affiliation: McCaughey Centre, VicHealth Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne, Australia. eda@unimelb.edu.au
authors.forename: Elise
authors.initials: E
authors.lastname: Davis
authors.forename: Amy
authors.initials: A
authors.lastname: Shelly
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Waters
authors.forename: Andrew
authors.initials: A
authors.lastname: Mackinnon
authors.forename: Dinah
authors.initials: D
authors.lastname: Reddihough
authors.forename: Roslyn
authors.initials: R
authors.lastname: Boyd
authors.forename: H Kerr
authors.initials: HK
authors.lastname: Graham
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000150:complications / Q000191:economics / Q000523:psychology*; D019988:Children with Disabilities / Q000523:psychology; D005260:Female; D005378:Financial Support; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D010146:Pain / Q000209:etiology / Q000523:psychology; D010287:Parent-Child Relations; D010551:Personality; D011788:Quality of Life; D012720:Severity of Illness Index; D019529:Sexuality / Q000523:psychology; D011795:Surveys and Questionnaires