Skip to main content

Research Repository

Advanced Search

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.


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.

Journal Article Type Article
Acceptance Date Sep 15, 2019
Online Publication Date Oct 30, 2019
Publication Date Apr 1, 2020
Deposit Date Sep 18, 2019
Publicly Available Date Sep 19, 2019
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
Keywords craniofacial; cleft lip and palate; diagnosis; feeding; maternal health; training; visible difference
Public URL


You might also like

Downloadable Citations