Provision of Care for Families Affected by Craniofacial Conditions: The Views of Nonspecialist Health Professionals

Abstract

Objective: A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological well-being of the affected family. As the first health professionals likely to come into contact with families, nonspecialists, 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 nonspecialists. The aim of this study was to investigate the provision of care for families affected by craniofacial conditions from the perspective of nonspecialist health professionals, with a view to informing the development of educational materials. Design: Individual semistructured telephone interviews (n = 14) were conducted with 3 diagnostic sonographers, 2 fetal medicine consultants, 3 midwives, 4 health visitors, and 2 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 nonspecialists, as well as a range of information and training needs that could improve their knowledge and confidence. Suggestions for the development of educational materials for nonspecialist health professionals are made.