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Provision of care for families affected by craniofacial conditions: The views of nonspecialist health professionals

Stock, Nicola Marie; Costa, Bruna



Objective: A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological wellbeing of the affected family. As the first health professionals likely to come into contact with families, non-specialists, such as diagnostic sonographers, midwives, and health visitors play a crucial role in facilitating familial adjustment. Yet, previous research has demonstrated parental dissatisfaction with the care delivered by non-specialists. The aim of this study was to investigate the provision of care for families affected by craniofacial conditions from the perspective of non-specialist health professionals, with a view to informing the development of educational materials.
Design: Individual semi-structured telephone interviews (n = 14) were conducted with three diagnostic sonographers, two fetal medicine consultants, three midwives, four health visitors, and two children’s nurses.
Results: Participants identified a range of barriers to the delivery of optimal care, including dealing with parental reactions, time pressure, hospital protocols and resources, a lack of contact with specialist craniofacial teams, and the emotional impact of delivering a diagnosis. Most participants had received no prior training in the area of congenital craniofacial conditions, while those who had felt current training materials were insufficient. All participants expressed a desire for further training and provided guidance regarding preferred content and format.
Conclusions: This study provides insight into the challenges faced by non-specialists, as well as a range of information and training needs which could improve their knowledge and confidence. Suggestions for the development of educational materials for non-specialist health professionals are made.

Journal Article Type Article
Publication Date Apr 1, 2020
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 57
Issue 4
Pages 470-476
APA6 Citation Stock, N. M., & Costa, B. (2020). Provision of care for families affected by craniofacial conditions: The views of nonspecialist health professionals. Cleft Palate-Craniofacial Journal, 57(4), 470-476.
Keywords craniofacial; cleft lip and palate; diagnosis; feeding; maternal health; training; visible difference


Provision of care for families affected by craniofacial conditions: The views of non-specialist health professionals (101 Kb)


Copyright Statement
Copyright(c)2019 Reprinted by permission of SAGE publications.
This is the accepted manuscript of an article that will appear in a future issue of the Cleft Palate-Craniofacial Journal.

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