Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European studyBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b1458 (Published 24 April 2009) Cite this as: BMJ 2009;338:b1458
- Jérôme Fauconnier, specialist in public health1,
- Heather O Dickinson, reader in epidemiology2,
- Eva Beckung, associate professor in physical therapy3,
- Marco Marcelli, specialist in paediatric neuropsychiatry4,
- Vicki McManus, research coordinator5,
- Susan I Michelsen, researcher in child health6,
- Jackie Parkes, senior lecturer in nursing7,
- Kathryn N Parkinson, senior research associate2,
- Ute Thyen, professor of paediatrics8,
- Catherine Arnaud, associate professor in public health9,
- Allan Colver, Donald Court professor of community child health2
- 1Université Joseph Fournier, DIM-Pôle Santé Publique Equipe ThEMAS, CHU de Grenoble BP 217, 38043 Grenoble Cedex 9, France
- 2Institute of Health and Society, Newcastle University, Newcastle upon Tyne NE1 7RU
- 3Göteborg University, Queen Silvia Children’s Hospital, S-41685 Gothenburg, Sweden
- 4Azienda Sanitaria Locale Viterbo, Viale Trento 18 H, 01100 Viterbo, Italy
- 5Enable Ireland, Lavanagh Centre, Ballintemple, Cork, Republic of Ireland
- 6National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5A, 1399 Copenhagen, Denmark
- 7School of Nursing and Midwifery, Queen’s University Belfast, Belfast BT9 5BN
- 8Klinik für Kinder und Jugendmedizin, Universitätsklinikum Schleswig-Holstein, Ratzeburger Allee 160, 23538 Lübeck, Germany
- 9Institut National de la Santé et de la Recherche Médicale, Université Paul Sabatier, Faculté de Médecine, 37 allées J Guesde, 31073 Toulouse, France
- Correspondence to: A Colver
- Accepted 21 January 2009
Objectives To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.
Design Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.
Setting Eight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.
Participants 1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.
Main outcome measure Children’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.
Results Children with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.
Conclusions Participation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.
We thank the families who participated in SPARCLE and the study’s research associates—Kerry Anderson, Barbara Caravale, Malin Carlsson, Eva Lise Eriksen, Delphine Fenieys, Bettina Gehring, Louise Gibson, Heidi Kiecksee, Ann Madden, and Ondine Pez—for their enthusiasm and dedication to contacting families and collecting high quality data.
Contributors: AC participated in planning, coordinated the study, wrote the paper, and took overall responsibility for the delivery of the work. AC had full access to all the data in the study, final responsibility for the decision to submit for publication, and is guarantor. JF participated in planning, was responsible for data collection, attended workshops planning analysis, and wrote the paper. UT, CA, EB, VMcM, SIM, and JP participated in planning the study, were responsible for data collection, and attended workshops planning analysis. HOD performed the statistical analysis, participated in maintaining the quality of the data, and wrote the paper. KNP was responsible for the day to day administration of the study and data collection in one centre and participated in maintaining the quality of the data. MM was involved in this study in its later stages and attended workshops. All authors saw and approved the final version.
Funding: The study was funded by the European Union Research Framework 5 Programme, grant number QLG5-CT-2002-00636. The German region joined later, funded by Bundesministerium für Gesundheit/German Ministry of Health (GRR-58640-2/14) and Stiftung für das Behinderte Kind/Foundation for the Disabled Child. The funders had no role in the study design; collection, analysis and interpretation of data; writing of the report; or decision to submit for publication.
Competing interests: None declared.
Ethical approval: This study was approved by ethics committees in each country. All parents gave written consent. All children with sufficient cognitive capacity gave written consent or communicated consent if unable to write.
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.