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

Stock, Nicola Marie; Costa, Bruna

Abstract

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
• 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
• DOI: https://doi.org/10.1177/1055665619883151
• Keywords: craniofacial; cleft lip and palate; diagnosis; feeding; maternal health; training; visible difference
• Public URL: https://uwe-repository.worktribe.com/output/3082297
• Contract Date: Sep 19, 2019