Reducing social anxiety in adolescents distressed by a visible difference: Results from a randomised control trial of a web-based intervention

A visible difference to the face or body may challenge adolescents’ adjustment and engagement in life activities, where some require psychosocial support. However, evidence is limited for whether existing interventions for this adolescent group reduce social or appearance-related distress. We therefore conducted a parallel-group, randomised control trial to evaluate the effectiveness of Young Person's Face IT, a self-guided web-based psychosocial intervention developed for adolescents with a visible difference who experience distress. Adolescents (N = 189, aged 11–18) from two countries (Norway and the Netherlands), were randomly allocated to an intervention group or care as usual (CAU). Outcomes were body esteem, social anxiety, perceived stigmatisation, and life disengagement. Compared with CAU, participants who completed Young Person's Face IT showed reductions in social anxiety symptoms (ηp2 = 0.06). No significant improvements were found for the other outcomes. This study endorses web-based psychosocial support in reducing social anxiety in adolescents distressed by a visible difference. Future studies are needed to confirm the effectiveness of Young Person's Face IT and to explore potential long-term effects

Improving Adolescents’ Adjustment to the Psychosocial Impact of Living With a Visible Difference: Understanding the Role of Communication with Parents and Adolescents’ Use of Web-Based Support

Living with a congenital or acquired condition or injury that affects appearance can be challenging during adolescence. A visible difference can impact adolescents’ psychosocial adjustment by negatively affecting body image and may put some at risk for stigmatising experiences. Yet, tailored psychosocial support can be difficult to access, since local healthcare systems have few specialists with clinical expertise in addressing appearance concerns. This dissertation aimed to increase our understanding of how to strengthen adolescents’ adjustment to the psychosocial impact of living with a visible difference. This aim was concretised in three studies: the first explored the role of parents’ communication about appearance issues with their adolescents, the second evaluated the effectiveness of Young Person’s Face IT (YPF), a web-based intervention made to promote adolescents’ adjustment to a visible difference, and the third explored factors related to increased intervention effects from YPF. The dissertation demonstrates that parents’ openness to communicate about appearance issues and adolescents use of YPF may promote positive adjustment to a visible difference

Caring for a child with Bardet-Biedl syndrome: A qualitative study of the parental experiences of daily coping and support

This study aimed to explore the parental experiences of having a child with Bardet–Biedl syndrome (BBS) and how parents managed to cope with this situation. Five parents of children with BBS (0–18 years old) participated in semistructured in-depth interviews. Inductive thematic analysis was used to identify themes. The parents experienced distress due to a lack of knowledge on BBS in their support system (e.g., school staff, clinicians, and family members), and they found it stressful to coordinate with multiple support services. Socialization at work, support from family members, and communicating with other parents who are in a similar situation promoted better coping and adaptations to daily life. Results highlight the importance of parents receiving adequate support while they face daily challenges. An increased knowledge on how rare disorders impact family life is needed in the support system