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

Measuring quality of life of primary antibody deficiency patients using a disease-specific health-related quality of life questionnaire for common variable immunodeficiency (CVID_QoL)

Abstract Background Common variable immunodeficiency (CVID) and other primary antibody deficiencies (PAD) are a heterogeneous group of > 300 congenital disorders affecting the immune system. Until recently, efforts to measure health-related quality of life (QoL) in PAD patients have utilised generic QoL tools and disease-specific tools for other conditions. Still, the full impact of the disease is probably not understood. We evaluated the performance of the CVID_QoL, a novel disease-specific QoL instrument for adults with CVID, on Norwegian PAD patients and compared the results to those of the generic WHOQOL-BREF. Methods Respondents were recruited through the Norwegian Centre for Rare Disorders’ patient database. Included patients fulfilled the following criteria (all three): 1.) Age ≥18 years, 2.) a PAD diagnosis, 3.) currently on immunoglobulin therapy. The CVID_QoL is a 32-item questionnaire. Global CVID_QoL scores were compared between Norwegian PAD patients and Italian CVID patients. Results In total, 83 PAD patients filled out the CVID_QoL, 63% had CVID, 76% were females. 32 patients filled out the WHOQOL-BREF. Feasibility was high (<1% missing). Internal consistency for the emotional- (Cronbach’s α-value = 0.91) and relational functioning (α =  0.77) subscales was high, but questionable for the gastrointestinal and skin symptoms subscale (α =  0.66). Convergent validity varied from weak to strong (range 0.3–0.8). Floor and ceiling effects were present. Conclusions Although many disease-specific characteristics are probably shared with CVID and other PAD, the CVID_QoL captures some, but not all, dimensions of PAD patients’ QoL. More evaluations of the CVID_QoL’s performance in different contexts are needed

Social support experiences when growing up with a parent with Huntington’s disease

Background Social support is a strong protector factor against the many negative effects stress and adversity in childhood can have on short- and long-term health. However, for young people who are exposed to adversity because their parent suffers from severe neurodegenerative disease, such as Huntington’s disease (HD), support from close caregiving relationships can be compromised. This study aimed to investigate what current and past experiences young people who grow up with a parent with HD have with social support outside the parent–child context.Methods A total of 36 semi-structured qualitative interviews with individuals who had current and past experiences growing up with a parent with HD were analysed using thematic analysis.Findings Relationships were experienced as supportive when they provided a sense of love, care, or belonging; when they provided coping skills; and when they reduced or alleviated stressors at home. Barriers to receiving and accepting support included their parent’s and others’ lack of acknowledgement and understanding about their situation and the young people’s own need to protect themselves or their family from support they feared could cause harm.Conclusion Our findings highlight the many important roles persons other than caregivers can have in helping young people who grow up with the distress and adversity of having a parent with a severe disease, such as HD. The findings suggest that by sustaining positive and adaptive emotions and/ or changing distressing emotions, social support help and can compensate for a lack of support in their caregiving relationships. In order for others to be experienced as supportive, the many barriers this vulnerable group may encounter must be addressed and overcome. Most importantly, support providers must understand how HD affects young people

Recruiting hard-to-engage groups to online psychosocial interventions: Experiences from an RCT study targeting adolescents with a visible difference

Online interventions have the potential to reach individuals who are otherwise difficult to engage due to stigma and sensitive topics. However, these individuals also tend to be hard to recruit in clinical trials, a crucial step in order to provide evidence-based interventions. This highlights a need for more information about efficient recruitment strategies for difficult-to-engage groups. The present study aimed to share the systematised experiences of recruiting adolescents with a visible difference to an online psychosocial intervention RCT. With the intention to recruit 160 participants (age 12–17), recruitment efforts were nationwide and included multiple arenas (e.g., hospitals, schools, social media), and methods (e.g., in-consultation, targeted letters, posters). Ultimately, 102 participants were recruited, and results showed that recruitment involving patient organisations, hospital departments, and specialised resource centres were most successful in reaching participants. The most efficient recruitment strategy was targeted letters sent home to eligible patients/members, as 78% of the participants were recruited this way. Media and social media recruitment efforts yielded comparatively few participants. No participants were recruited through schools and educational health care services, primary health care services, or municipal and regional authorities. Our results are discussed in relation to barriers with recruiting difficult-to-engage groups to RCTs, providing useful recruitment tools to future similar studies. For instance, future studies are recommended to utilise targeted approaches over general population approaches. Also, results from recruitment efforts should routinely be reported, as this ultimately will provide more general strategies for effective recruitment and support studies in reaching recruitment goals

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 visible differences. However, more knowledge is needed about variables that contribute to variations in intervention effects, to identify those that may benefit most from YPF. Objective: This study aimed to investigate demographic, psychosocial, and intervention-related variables as predictors of overall intervention effects following adolescents’ use of YPF. Methods: We used longitudinal data collected as part of a larger ongoing mixed-methods project and randomized controlled trial investigating the effectiveness of the [Language] version of YPF. Participants were 71 adolescents (mean age 13.98, range 11–18 years; 61% girls, 43/71) with a wide range of visible differences. 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 post-intervention. Predictor variables were demographic (age and gender), psychosocial (frequency of teasing experiences related to aspects of body and appearance, and depressive and/or anxiety symptoms), and intervention-related (time spent on YPF) variables. The study was registered on ClinicalTrials.gov (trial registration number: NCT03165331). Results: Two thirds of the adolescents (47/71, 66%) completed all YPF sessions and spent on average 265 minutes (SD=125) on the intervention. Backward multiple regression with a P-value threshold of .20 (two-tailed) revealed that several variables were retained in the final models and predicted post-intervention 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/or 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/or anxiety symptoms (P=.06). Life disengagement was predicted by gender (P=.03), depressive and/or anxiety symptoms (P=.001), and time spent on YPF (P=.14). Self-rated health satisfaction was predicted by age (P=.008). However, results were limited by relatively low explained post-intervention 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 that spend sufficient time on YPF, may obtain better overall intervention effects

Adolescents and parents’ perception of Young Person's Face IT: An online intervention for adolescents struggling with conditions affecting their appearance

Objective A visible difference in appearance caused by a congenital or acquired condition can negatively affect adolescents’ psychosocial well-being. Young Person's Face IT (YPF) is an online intervention based on cognitive behavioural therapy and social skills training, developed to help adolescents who struggle with adjusting to a visible difference. The objective of the present study was to explore adolescents’ and parents’ perceptions of the intervention's relevance and usefulness in supporting young people with appearance-related psychosocial concerns. Methods Participants were adolescents ( N  = 76, aged 11–18) and parents ( N  = 15), recruited in a larger randomised controlled trial aiming at evaluating YPF. This qualitative study with descriptive data includes adolescents’ ratings on YPF's usefulness, and interview data from adolescents and parents on their experiences with YPF. The interviews were analysed using a thematic approach. Results Results indicated that YPF was experienced as useful and relevant. Interviews showed that adolescents felt validated through the programme's content, discovered that other young people had similar experiences and felt that YPF could contribute to changing self-perceptions for the better. However, results could not confirm whether perceived usefulness led to the development and use of new social skills in real-life situations. Conclusion This study offers new perspectives on the relevance and usefulness of YPF in supporting adolescents with appearance-related psychosocial concerns. Findings suggest that updates and modifications are required so that YPF stays relevant and useful for adolescents in need of support. Trial registration number NCT0316533

Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades

Objective: This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. Design: A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Results: Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction/Canaloplasty; and (5) Quality of Life and Patient Satisfaction. Conclusions: Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes

Characteristics and descriptive statistics for study cohort.

<p>Characteristics and descriptive statistics for study cohort.</p