Quantifying the physical, social and attitudinal environment of children with cerebral palsy

Abstract

Purpose. To develop an instrument to represent the availability of needed environmental features (EFs) in the physical, social and attitudinal environment of home, school and community for children with cerebral palsy.

Method. Following a literature review and qualitative studies, the European Child Environment Questionnaire (ECEQ) was developed to capture whether EFs needed by children with cerebral palsy were available to them: 24, 24 and 12 items related to the physical, social and attitudinal environments, respectively. The ECEQ was administered to parents of 818 children with cerebral palsy aged 8–12 years, in seven European countries. A domain structure was developed using factor analysis.

Results. Parents responded to 98% of items. Seven items were omitted from statistical models as the EFs they referred to were available to most children who needed them; two items were omitted as they did not fit well into plausible domains. The final domains, based on 51 items, were: Transport, Physical – home, Physical – community, Physical – school, Social support – home, Social support – community, Attitudes – family and friends, Attitudes – teachers and therapists, Attitudes – classmates.

Conclusion. ECEQ was acceptable to parents and can be used to assess both the access children with cerebral palsy have to the EFs that they need and how available individual EFs are.

Keywords:

• Environment
• children
• cerebral palsy

Acknowledgements

The authors are grateful to the families who participated in SPARCLE and to 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. They thank Ms. Denise Howel for helpful comments on the manuscript. 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.