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Incorporating Children's and Their Parents' Perspectives into Condition-Specific Quality-of-Life Instruments for Children with Cerebral Palsy: A Qualitative Study

Lookup NU author(s): Dr Kathryn Parkinson, Helen Rice

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Abstract

Objectives: This study investigated the extent of agreement between children with cerebral palsy (CP) and their parents concerning their views on what contributed to the children's quality of life. It also investigated how well an Australian condition-specific health-related quality of life self-report measure for children with CP, the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child), mapped to the views of UK children and parents. Methods: UK children with CP aged 8 to 13 years and their parents participated in qualitative interviews about their perspectives on the child's quality of life. Results: The interviews with 28 children and 35 parents showed considerable overlap but also some divergence. For example, both parties considered social relationships to be important, but children described how they enjoyed being on their own at times whereas parents tended not to value time spent alone for children. The CP QOL-Child covered most themes considered to be important to the children's quality of life. Omissions included relationships with extended family members, restful recreational activities and associated possessions, relaxing, tiredness, negative emotions, and safety. Conclusions: Both children's and parents' views are required for the development of child health-related quality of life instruments. The CP QOL-Child has good coverage of many aspects discussed in the interviews. Cultural differences may account for its omission of some topics considered important by UK children and parents. Rewording of many of the CP QOL-Child's items and further work on item content would optimize its suitability for UK children and possibly for children elsewhere.

Publication metadata

Author(s): Parkinson KN, Rice H, Young B

Publication type: Article

Publication status: Published

Journal: Value in Health

Year: 2011

Volume: 14

Issue: 5

Pages: 705-711

Print publication date: 30/04/2011

ISSN (print): 1098-3015

ISSN (electronic): 1524-4733

Publisher: Elsevier Inc.

URL: http://dx.doi.org/10.1016/j.jval.2010.12.003

DOI: 10.1016/j.jval.2010.12.003

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