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"Exposed and vulnerable": Parent reports of their child's experience of multidisiplinary craniofacial consultations

Billaud Feragen, Kristin; Myhre, Anita; Stock, Nicola Marie

"Exposed and vulnerable": Parent reports of their child's experience of multidisiplinary craniofacial consultations Thumbnail


Kristin Billaud Feragen

Anita Myhre

Nicola Stock
Occasional Associate Lecturer - CHSS - HSS


Objective: Childhood is a period of extensive socioemotional development, which can be impacted by the presence of a congenital craniofacial anomaly (CFA). Complex multidisciplinary treatment and long-term follow-up is normally required, yet understanding of children’s treatment experiences is limited. The objective of this study was to investigate children’s experiences of multidisciplinary team (MDT) consultations from the perspective of their parents.
Design: Thirty-eight parents of children with a rare CFA were interviewed in person or over the telephone. Interviews were transcribed verbatim, translated into English, and explored using thematic analysis.
Results: Background factors influencing the child’s experience of the consultation included age, developmental stage, personality, and prior treatment experiences. Participants tried to prepare their child for meeting the MDT, but did not fully understand what to expect themselves. During consultations, participants were acutely focused on their child’s emotional state, making it difficult to balance their desire to protect the child from potentially negative experiences, and the need to engage in a constructive dialogue with health professionals. Participants believed that health professionals’ conduct could considerably influence the child’s wellbeing and subsequent treatment decisions. Finally, participants highlighted the need to debrief their child to help them adjust positively.
Conclusions: The ultimate goal of craniofacial care is to help children develop into confident adults who are able to cope with the challenges associated with their condition. MDTs play a vital role in creating a safe and supportive environment in which children feel genuinely informed and involved in key aspects of their care.


Billaud Feragen, K., Myhre, A., & Stock, N. M. (2019). "Exposed and vulnerable": Parent reports of their child's experience of multidisiplinary craniofacial consultations. Cleft Palate-Craniofacial Journal, 56(9), 1230-1238.

Journal Article Type Article
Acceptance Date Apr 22, 2019
Online Publication Date May 29, 2019
Publication Date Oct 1, 2019
Deposit Date Apr 24, 2019
Publicly Available Date Apr 24, 2019
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 56
Issue 9
Pages 1230-1238
Keywords craniofacial, healthcare experiences, parent perspective, multidisciplinary team, psychological well-being, shared decision-making, visible difference
Public URL
Additional Information Additional Information : Copyright(c)2019 Reprinted by permission of SAGE publications.


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