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Children were marginalised by parents and healthcare professionals during consultations for dietary management of cystic fibrosis

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 Q What are children’s and parents’ perspectives on how children, parents, and professionals communicate with one another about the dietary management of cystic fibrosis (CF)?

DESIGN

Interviews and participant observation.

SETTING

Participants’ homes and 2 CF centres in Ireland.

PARTICIPANTS

A purposive sample of 32 children 6–14 years of age (56% boys) who had CF for >1 year and their parents (28 mothers and 5 fathers).

METHODS

Children and parents were interviewed separately in their homes over a period of 21 months using an open and flexible interview guide that allowed topics to be raised spontaneously. Constant comparison and theoretical sampling were used to develop themes. Interview data and clinical observations from previous research provided a context for observing communications between different parties during consultations. Clinic consultations of a subgroup of 21 children with various healthcare professionals were audiotaped, and non-verbal behaviours and interactions were documented in field notes. Conversations in the clinic were examined using discourse analysis to identify communication patterns among parents, children, and healthcare professionals.

MAIN FINDINGS

4 core themes …

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