“Exposed and Vulnerable”: Parent Reports of Their Child’s Experience of Multidisciplinary Craniofacial Consultations

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 are 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 well-being 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. Multidisciplinary teams 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.

“Will You Still Feel Beautiful When You Find Out You Are Different?”: Parents’ Experiences, Reflections, and Appearance-Focused Conversations About Their Child’s Visible Difference

“…M. Nelson, 2002). Nonetheless, parents remained reluctant to bring the issue forward, even when some children had asked questions about their appearance, fearing they would generate insecurities or engender appearance concerns, as also demonstrated in a recent study on parents of children with a visible difference (Feragen et al, 2019), and in other medical conditions (Middleton et al, 2018;O'Toole et al, 2021). Self-doubt has been described as prevalent in mothers of children with disabilities (A. M. Nelson, 2002), an understandable and normal reaction to unusual circumstances.…”

“…For parents, feelings of shock, grief, anger, guilt, and/ or anxiety about the child's future are common following their child's diagnosis (Klein et al, 2006; A. M. Nelson, 2002;Pope et al, 2005). Parents must support their children through a series of surgical interventions (Feragen et al, 2019), many of which will change their child's appearance. Although previous research has found parents to be satisfied with the outcomes of their children's appearance following surgery (Feragen & Stock, 2017), parents must nonetheless face what is experienced as the challenging task of making difficult decisions on their child's behalf (van Manen, 2014).…”

“Have We Done Enough?” A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury

“…Research with parents of children with burn injuries or craniofacial conditions has illustrated that the desire to protect their children can result in the restriction of social activities outside of the home and educational opportunities that parents perceive as threatening. 12,52 Siblings of burn-injured children have also reported less involvement in school activities and lower social competence when compared to a normative sample. 53 Therefore, it is important to consider the potential impact of a parent's increased desire to protect their children, in terms of their child's social and emotional development.…”

Telemedicine as an Alternative Way to Provide Multidisciplinary Cleft Care During the COVID-19 Pandemic

“…The standard team structure, consultation processes, and use of telemedicine differ across sites and countries. For example, in Malaysia and certain countries, depending on the healthcare institution, an average of 5-15 health professionals may attend multidisciplinary combined clinics [28,29]. The number of patients typically seen on a consultation day varies from week to week.…”