Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy

Abstract

Objective: Almost all children with quadriplegic cerebral palsy (CP) have feeding difficulties. Our aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic CP from the perspective of parents and to compare findings with the perceptions of health professionals.

Design: Qualitative cross-sectional study.

Methods: A trained facilitator conducted four semi-structured focus groups with parents (n = 21) of children with quadriplegic CP attending a multi-disciplinary feeding clinic at a paediatric teaching hospital in Sydney, Australia, between November 2003 and February 2005. All sessions were audio- and video-taped. NVivo software was used to facilitate thematic analysis of the transcribed audiotapes and to compare them with data from focus groups conducted by the same research team with health professional participants.

Results: Parental perceptions clustered into the same five themes described by health professionals (parent-child interaction; delivery of health services; the child's emotional well-being; the child's physical well-being, and socialisation), but the content of the subthemes and the values attached differed, for example health professionals valued weight gain, whereas parents valued their child feeling loved. Health professionals did not consider the full range of issues important to families. The differences in priorities for treatment outcomes negatively affected the parent-health professional relationship.

Conclusions: Disparities between parents' and health professionals' perceptions provide useful insight into communication between the two, identify the range of issues important to families, and highlight the parents' expert role in assessing the child's emotional and social well-being. The five themes identified provide a framework for a comprehensive evaluation of the health status of children with quadriplegic CP and feeding difficulties.