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

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

Abstract

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.

• 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
• DOI: https://doi.org/10.1177/1055665619851650
• Keywords: craniofacial, healthcare experiences, parent perspective, multidisciplinary team, psychological well-being, shared decision-making, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/848336
• Additional Information: Additional Information : Copyright(c)2019 Reprinted by permission of SAGE publications.
• Contract Date: Apr 24, 2019