Parent-perceived barriers to participation in children and adolescents with cerebral palsy

To pilot the use of the Craig Hospital Inventory of Environmental Factors (CHIEF) questionnaire to ascertain information regarding barriers to participation experienced by a sample of New Zealand children with cerebral palsy.

The CHIEF questionnaire was administered to parents/caregivers of a consecutive sample of 32 children with cerebral palsy attending a paediatric tertiary clinic in Auckland. Twenty-three children walked independently, 5 used walking aides and four used a wheelchair. Twenty-four of the 32 parent-respondents provided contextual feedback for their responses and wider issues relating to the topic.

The barriers to participation most commonly reported by parents were attitudes at school (72%) and in the community (56%), difficulties accessing personal equipment (59%), and the natural environment and built surroundings (56%). Contextual information from families generally supported their answers to the questionnaire but highlighted that some parents had confused the 'not applicable' and 'never' options. Discrepancy between scores on the policy-related questions and later contextual feedback suggested that the policy subscale did not fully capture family concerns about limited availability of public funding for equipment, therapy, and educational support.

The CHIEF instrument proved easy to use in a clinic setting. However, parent-respondent feedback highlighted the difficulties in interpreting responses to some items when the instrument is used in isolation to quantify environmental barriers to participation. The results highlight the need to develop research approaches and tools that can explore barriers to participation by children with cerebral palsy taking account of socio-economic and other relevant contextual information.