“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

Abstract

To investigate parents’ reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: “Managing emotions: A dynamic process,” “Through another lens: External reminders of difference,” and “Awareness of difference: Approaching the child.” Findings suggest that although parents learned to accept and love their child’s visible difference, external factors such as appearance-altering surgery and other people’s reactions activated difficult emotions in parents. Parents struggled to decipher whether and when to raise appearance-related issues with their child, and how this could be done without distressing the child. Anticipatory guidance that facilitates positive appearance-focused conversations both within and outside the home seems to be needed. Parenting skills could also be strengthened by preparing parents for social reactions to the child’s visible difference, and their child’s changed appearance following surgery.

Understanding the Experiences of Living With an Artificial Eye in Children With Retinoblastoma—Perspectives of Children and Their Parents

“…Our findings also suggest that for a child who has been enucleated, school and peer relationships are a particular focus, with parents often balancing the need for managing the practicalities and their own anxieties against ensuring that their child did not stand out or experience bullying. Similar findings have been found in research around children with a visible difference following surgery (Feragen et al, 2022) and children with an amputation (Loucas et al, 2017). Although parents experienced anxiety regarding how their children would be treated due to their enucleation, our study found that the children's interpretations and reactions to others comments varied, suggesting some level of resilience and coping methods being utilized.…”

Predictors of adolescents’ response to Young Person’s Face IT: A web-based intervention to improve psychosocial adjustment to having an appearance-affecting condition (Preprint)

“…Despite the benefits of open communication, there is a dearth of research on communication patterns between parents and their adolescents in relation to a visible difference. Some recent studies Feragen et al, 2021) have suggested that open communication is important both for parents' ability to understand their child's thoughts and feelings about their visible difference and for facilitating children's own understanding of their appearance. However, some parents may find it difficult to raise appearance-related issues with their child or adolescent, because they fear doing so will trigger new problems or because they lack the confidence to do so Feragen et al, 2021).…”

“…Some recent studies Feragen et al, 2021) have suggested that open communication is important both for parents' ability to understand their child's thoughts and feelings about their visible difference and for facilitating children's own understanding of their appearance. However, some parents may find it difficult to raise appearance-related issues with their child or adolescent, because they fear doing so will trigger new problems or because they lack the confidence to do so Feragen et al, 2021). Doubts about how and when to initiate such conversations may impede parents' initiative to communicate openly with their children or adolescents about their visible difference (Feragen et al, 2021).…”

“…However, some parents may find it difficult to raise appearance-related issues with their child or adolescent, because they fear doing so will trigger new problems or because they lack the confidence to do so Feragen et al, 2021). Doubts about how and when to initiate such conversations may impede parents' initiative to communicate openly with their children or adolescents about their visible difference (Feragen et al, 2021). It is possible that adolescents, compared to children, use their parents to a lesser degree or in other ways when raising and discussing sensitive appearance-related issues.…”

“…Ultimately, parents are the most common source of support for many adolescents with a visible difference (Riklin et al, 2020). Hence, as demonstrated by another study including parents of younger children (Feragen et al, 2021), staying informed about adolescents' thoughts and feelings can be especially important for parents' ability to offer timely support for their adolescent and promote their adolescent's adjustment. The findings of Paper I align with those reported by Feragen et al (2021), and they underscore that communicating openly about appearance-related issues can play an important role in parents' ability to provide guidance, advice, and positive reinforcement to their adolescents.…”