Clinic consultations with children and parents on the dietary management of cystic fibrosis

Abstract

This paper examines clinic consultations on the dietary management of cystic fibrosis (CF) with particular consideration to the role of children. The role of parents is also examined to determine how their involvement impacts on the role of children during consultations. The data are drawn from interviews with 32 Irish school aged children with cystic fibrosis and their parents, and participant observations during clinic consultations with a sub-group of 21 children. Data were analysed concurrently with data collection using a method of constant comparison, which involved comparing and contrasting incidents in the data to develop themes. Theoretical sampling was used to further explore and develop emergent themes. Discourse analysis was applied to clinic conversations. Children were seen to have little active involvement during consultations, leaving them marginalised, as conversations were directed at parents primarily, whose accounts were privileged over those of children. A surveillance approach to consultations involving interrogative style questioning and generally closed conversations was seen to contribute to the marginalised position of children. In addition, dietary advice limited children's involvement because it was of little relevance to their understandings of being healthy and the dietary implications of these. The findings highlight a need to acknowledge children as active participants in their dietary care. Implications for developing a child-centred approach to dietary consultations are discussed, including implications for working with children towards improved health outcomes of managing CF diet.