Predictors of Adolescents' Response to a Web-Based Intervention to Improve Psychosocial Adjustment to Having an Appearance-Affecting Condition (Young Person's Face IT): Prospective Study.

BACKGROUND: Adolescents with a condition affecting their appearance that results in a visible difference can be at risk of psychosocial distress and impaired adjustment. Evidence for the effectiveness of existing interventions in improving psychosocial outcomes is limited, and relevant treatment can be difficult to access. Young Person's Face IT (YPF), a self-guided web-based intervention, has demonstrated potential in reducing social anxiety in adolescents with a visible difference. However, more knowledge is needed about the variables that contribute to variations in intervention effects to identify those who may benefit most from YPF. OBJECTIVE: This study aimed to investigate demographic, psychosocial, and intervention-related variables as predictors of overall intervention effects after adolescents' use of YPF. METHODS: We used longitudinal data collected as part of a larger, ongoing mixed methods project and randomized controlled trial (ClinicalTrials.gov NCT03165331) investigating the effectiveness of the Norwegian version of YPF. Participants were 71 adolescents (mean age 13.98, SD 1.74 years; range 11-18 years; 43/71, 61% girls) with a wide range of visible differences. The adolescents completed primary (body esteem and social anxiety symptoms) and secondary (perceived stigmatization, life disengagement, and self-rated health satisfaction) outcome measures at baseline and postintervention measurement. The predictor variables were demographic (age and gender), psychosocial (frequency of teasing experiences related to aspects of the body and appearance as well as depressive and anxiety symptoms), and intervention-related (time spent on YPF) variables. RESULTS: Two-thirds (47/71, 66%) of the adolescents completed all YPF sessions and spent an average of 265 (SD 125) minutes on the intervention. Backward multiple regression analyses with a 2-tailed P-value threshold of .20 revealed that several variables were retained in the final models and predicted postintervention outcome changes. Body esteem was predicted by age (P=.14) and frequency of teasing experiences (P=.09). Social anxiety symptoms were predicted by gender (P=.12), frequency of teasing experiences (P=.03), depressive and anxiety symptoms (P=.08), and time spent on YPF (P=.06). Perceived stigmatization was predicted by age (P=.09), gender (P=.09), frequency of teasing experiences (P=.19), and depressive and anxiety symptoms (P=.06). Life disengagement was predicted by gender (P=.03), depressive and anxiety symptoms (P=.001), and time spent on YPF (P=.14). Self-rated health satisfaction was predicted by age (P=.008). However, the results were limited by relatively low explained postintervention variance, ranging from 1.6% to 24.1%. CONCLUSIONS: This study suggests that adolescent boys, adolescents who experience higher levels of psychosocial distress related to their visible difference, and adolescents who spend sufficient time on YPF may obtain better overall intervention effects.

Is it safe? Exploring positive and negative outcome changes following a web-based intervention for adolescents distressed by a visible difference (YP Face IT).

Despite the importance of making sure that psychological interventions are safe, research including both positive and negative effects of novel internet-delivered support is scarce. The aim of our study was to explore whether, and in what way, a new intervention for adolescents distressed by a visible difference (YP Face IT; YPF, Norwegian version) led to positive and/or negative outcome changes. Participants were 79 adolescents (62.00% girls; Mage = 13.84, SD = 1.73), with a visible difference. All had access to the YPF programme and answered questionnaires assessing social anxiety and body esteem pre- and post-intervention. Analyses included calculations of statistical as well as clinically significant and reliable changes. Results showed that fewer participants reported clinical levels of social anxiety and low body esteem after access to YPF. Results also indicated that participants who had a positive pre- to post-intervention change had lower levels of perceived self-worth pre-intervention, and spent more time on the intervention than those with a negative pre- to post change. Three participants showed a clinically significant negative and reliable change in social anxiety or body esteem from pre- to post-intervention. However, based on an examination of these participants' characteristics, preliminary findings support the safety of YPF.

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.

"It's tough because I see that it's upsetting her ": A qualitative exploration of parents' perceptions of talking with their adolescents about having a visible difference.

Many adolescents live with a visible difference that affects their lives in profound ways, but studies investigating parents' perceptions of raising appearance issues during conversations with their adolescent are lacking. As part of a larger study exploring the effectiveness of a web-based intervention (YP Face IT), semi-structured interviews were conducted with 18 parents of adolescents with a visible difference. Thematic analysis revealed four overarching themes: (1) Conversational settings; (2) Understanding adolescents' feelings and thoughts; (3) Providing parental guidance and encouragement; and (4) When the dialogue becomes difficult. Results showed that parents resorted to specific settings when instigating conversations about appearance, such as when their adolescents expressed a need for emotional care, were perceived to be upset, or whilst managing their condition. The choice of setting was also important as some parents generally felt uncomfortable raising appearance issues with their adolescent, for fear of fueling appearance concerns. Results further suggest that open communication can enable parents to stay informed about their adolescent's psychosocial adjustment to a visible difference. These results stress the need to make available support to facilitate open communication about appearance-related topics between parents and adolescents.

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.