Health professionals' perceptions of feeding-related quality of life in children with quadriplegic cerebral palsy

Child Care Health Dev. 2007 Sep;33(5):529-38. doi: 10.1111/j.1365-2214.2006.00709.x.

Abstract

Background: Our aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic cerebral palsy (QCP) from the perspective of health professionals to provide a framework for comprehensive clinical evaluation of health status in this group.

Methods: A trained facilitator conducted five semi-structured focus groups during September and November 2003. Participants were recruited through the two paediatric hospitals in Sydney and community-based services, and included general and specialist paediatricians (n = 18), nurses (n = 15) and allied health professionals (n = 13), with an 80% response rate. All sessions were audio- and videotaped. NVIVO software was used to facilitate thematic analysis of the transcribed audiotapes.

Results: Responses clustered into five themes: delivery of health services, parent-child interaction, the child's physical and emotional well-being, and social participation. Participants thought the QoL of child and parent was inseparable. Parent-child interaction, delivery of services and physical well-being were the topics which prompted most participant interaction. These findings did not vary across disciplines.

Conclusions: Health professionals identified five domains which provide a framework within which clinicians may comprehensively evaluate the health status of children with QCP and feeding difficulties. These five domains may also be used to inform a new feeding-related QoL instrument for use in this group of patients.

Publication types

  • Multicenter Study

MeSH terms

  • Adult
  • Cerebral Palsy / psychology
  • Cerebral Palsy / rehabilitation*
  • Child
  • Eating / psychology*
  • Feeding Behavior / psychology*
  • Female
  • Health Personnel / psychology*
  • Health Services Research
  • Humans
  • Male
  • New South Wales
  • Parent-Child Relations
  • Professional-Patient Relations
  • Quality of Life*
  • Surveys and Questionnaires