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

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 wellbeing 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.