What parents of children with cystic fibrosis expect of educational events
Intended for healthcare professionals
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What parents of children with cystic fibrosis expect of educational events

Hannah Gormley Psychologist in clinical training, Leeds Teaching Hospitals
Alistair Duff Consultant clinical psychologist, Leeds Teaching Hospitals
Keith Brownlee Consultant paediatrician, Leeds Teaching Hospitals
Cristina Hearnshaw Medical student, University of Leeds School of Medicine

Feedback about an annual activity for carers highlighted the benefits of contact with others in a similar situation and the wish for more involvement in organising the event, say Hannah Gormley and colleagues

The aim of this study was to evaluate a parent/carer hospital-based educational event and increase future participation by tailoring the format to meet parent/carer preferences. Fifty parents/carers of children with cystic fibrosis (CF) completed semi-structured telephone surveys, interpreted using frequency data and content analysis. Most were satisfied with the topics covered, presentation mode, hospital location and day of the week, but 29 were dissatisfied with a 6pm start. The main benefit perceived was contact with other parents/carers, rather than the educational content. Of the non-attenders, some reported actively limiting participation in CF education and support groups as part of their coping style. No differences were observed between the health outcome measures of children of parents who attended compared with those of parents who did not. The active promotion of social contact between parents/carers and the tailoring of events to achieve this are paramount for increasing attendance.

Nursing Children and Young People. 26, 7, 21-24. doi: 10.7748/ncyp.26.7.21.e486



Peer review

This article has been subject to open peer review and checked using antiplagiarism software

Conflict of interest

None declared

Received: 22 November 2013

Accepted: 07 May 2014

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