Gender change and stigmatization in late-treated Indonesian children, adolescent, and adult patients with DSD

In Indonesia clinical management of Disorders of Sex Development (DSD) is challenged by limited knowledge and limited diagnostic and treatment facilities. Prior to this study, most patients remained untreated and grew up with ambiguous bodies and doubts about their gen-der. We investigated patients’ experiences of being raised in ambiguity. 118 Indonesian patients, ages 6 – 41, with 46XX DSD (n=27), 46XY DSD (n=77) and chromosomal DSD (n=14) were compared to 118 control subjects matched for gender, age, and living area. Questionnaires for gen-der identity, gender role behavior and social stigmatiza-tion were translated or designed. The psychometric properties were satisfactory. For patient and control group comparisons, Mann-Whitney U and Fisher’s Exact tests were applied. The results showed that 7% of the children, 8% of the adolescents and 44% of the adults changed gender, parti-cularly non-diagnosed and non-treated patients with 46XY DSD (81%). 95% of the patients changed gender from female to male, including untreated patients with 46,XX CAH-SV. Compared to control groups, cross-gender role behavior was seen in young girls with 46XX CAH-SV (p=.047) and adolescent girls with different types of DSD (p=.01). In girls with DSD, confusion with gender identity was seen (young girls p=.004; adolescent girls p=.01). Adult men reported past cross-gender role behavior (p=.01) and past problems in gender identification (p=.01) prior to female-to-male gender change. Children with genital ambiguity (p<.006) and cross gender behavior (p<0.001) and adults with ambiguous 1Diponegoro University, Faculty of Psychology, Semarang, Indonesia Full list of author information is available at the end of the article bodies (p=.001) and adults who changed gender (p<0.03) suffered stigmatization. Rejection or isolation elicited depression and withdrawal from social activities in girls (p=.002), women (p=.009) and youngsters who had changed gender (p=.02). We conclude that a high percentage of our patients changed gender. The wish for gender change was parti-cularly seen in patients with progressive masculinization. Patients with DSD who had visible ambiguity in physical and behavioral appearance suffered stigmatization. Teas-ing and rejection led to strong emotional reactions. Early clinical evaluation and treatment, patient and parent edu-cation, and teaching coping strategies will improve qual-ity of life

Social stigmatisation in late identified patients with disorders of sex development in Indonesia

Objectives To assess social stigmatisation related to atypical appearance of the body, including, but not limited to the external genitalia, among Indonesian patients with a disorder of sex development (DSD). Until recently, diagnostic evaluation, information about the underlying causes of DSD and treatment options were sparsely available for these patients. Methods Eighty-one parents of children and adolescents with DSD (aged 6–17 years) and 34 adult patients with DSD (aged 18–41 years) completed the Social Stigmatisation Scale towards DSD, an instrument developed to assesses the frequency of stigmatisation and the level of stress associated with these experiences. Open-ended questions investigated detailed information on stigmatisation as well as parents’ and patients’ emotional and behavioural reactions to these experiences. Differences in stigmatisation were explored across sex of rearing, gender change history, treatment status and DSD characteristics that could be easily identified by others (e.g., masculinisation of the body in women). Results Social stigmatisation was reported by patients with atypical appearance of their genitalia, atypical appearance of their body aside from their genitals, among those who displayed cross-gender behaviour and those who changed gender. Among participants reared as women and among children and adolescents who changed gender, social stigmatisation was associated with ostracism, depressive symptoms and social isolation. Conclusions Patients unable to conceal their condition (those with visible physical atypicality and those who changed gender) experienced social stigmatisation. Stigmatisation was stressful and related to isolation and withdrawal from social interaction. Education about DSD, self-empowerment and medical interventions to prevent atypical physical development may remove barriers to acceptance by others for affected individuals

Anxiety and depression in adolescents with a visible difference: A systematic review and meta-analysis

Living with a visible difference can entail challenging social situations, associated with psychosocial symptoms. However, it is not clear whether adolescents with a visible difference experience more anxiety and depression than unaffected peers. We aim to determine whether adolescents with a visible difference experience more symptoms of anxiety and depression than unaffected peers. A literature search was conducted in Embase, Medline Ovid, Web of Science, Cochrane CENTRAL, PsycINFO Ovid, and Google Scholar. Meta-analyses were done using random-effects models to calculate a standardised mean difference. Analyses for subgroups were used to study causes of visible difference. Eleven studies were identified (n = 1075, weighted mean age = 15.80). Compared to unaffected peers, adolescents with a visible difference experience more symptoms of anxiety (SMD = 0.253, 95 % CI [0.024, 0.482], p = .030), but not depression (SMD = 0.236, 95 % CI [?0.126, 0.599], p = .202). Adolescents with a skin condition did not experience more symptoms of anxiety (SMD = 0.149, 95 % CI [?0.070, 0.369], p = .182) or depression (SMD = 0.090, 95 % CI [?0.082, 0.262], p = .305) when compared to unaffected peers. Overall, more symptoms of anxiety are found in adolescents with a visible difference compared to peers. No differences in anxiety or depression were found for skin differences. Screening for anxiety is recommended

The provision of specialist psychosocial support for people with visible differences: A European survey

© 2018 A substantial body of research has demonstrated the challenges commonly facing people with visible differences (disfigurements) and explored the potential benefits offered by specialist psychosocial support and intervention for those who are negatively affected. However, little is known about the availability of such support in Europe for people whose appearance is in any way different to ‘the norm’. This survey of 116 psychosocial specialists from 15 European countries, working with a range of patient groups, has shown a tendency for specialists to prioritise Cognitive-behavioural-based approaches, amongst a wide range of other approaches and interventional techniques. It indicates variations in the availability of support, and a perceived need for improved access to interventions, additional training, and greater awareness of the psychosocial issues associated with visible differences

Mental Health of School-Aged Children Treated with Propranolol or Atenolol for Infantile Hemangioma and Their Parents

Background: Infants with infantile hemangioma (IH) have been effectively treated with propranolol or atenolol. Concerns were raised about the mental health of these The trial registration: Netherlands Trial Register Trial NL7703.children at school age, due to central nervous system effects of propranolol and visible nature of IH. Objective: This study aimed to compare the mental health at school age of children treated with propranolol to children treated with atenolol for IHs and their parents. Methods: This two-centered cross sectional study included children aged =6 years and treated with either propranolol or atenolol for IH during infancy. Children’s outcomes were performance-based affect recognition (Dutch version of the Developmental Neuropsychological Assessment-II [NEPSY-II-NL]), parent-reported emotional and behavioral functioning (Child Behavioral Checklist [CBCL]), and health-related quality of life (KIDSCREEN27). Parents’ outcome was parenting stress (Parenting Stress Questionnaire [OBVL]). Results: Data of 105 children (36 propranolol, 69 atenolol; 6.0–11.8 years) were analyzed. Mental health outcomes did not differ between both ß-blocker groups. Although overall functioning was in line with norms, children presented specific problems concerning affect recognition, parent-reported attention, and social quality of life. Parents showed increased physical symptoms, depressive symptoms, and parent-child relationship problems. Conclusion: No difference in mental health at school age was found between children treated with propranolol or atenolol for IH. Although few overall mental health problems were found, specific problems require follow-up. Follow-up of children should be directed toward affect recognition, attention, and social functioning in daily life. Problems reported by parents could be ameliorated by mental health support during and after their infant’s ß-blocker treatment.</p

Investigating online psychological treatment for adolescents with a visible difference in the Dutch YP Face IT study: Protocol of a randomised controlled trial

Introduction This paper outlines the study protocol for the Dutch Young People (YP) Face IT Study. Adolescents with a visible difference (ie, disfigurement) often experience challenging social situations such as being stared at, receiving unwanted questions or being teased. As a consequence, some of these adolescents experience adverse psychosocial outcomes and appearance-related distress. To address this appearance-related distress, an online psychotherapeutic intervention, YP Face IT, has been developed. YP Face IT uses social interaction skills training and cognitive-behavioural therapy. The Dutch YP Face IT Study tests whether this intervention is effective in reducing social anxiety and improving body esteem. Methods and analysis Participants are adolescents aged 12-18 with a visible difference and experiencing appearance-related distress. In this two-armed randomised controlled trial, 224 adolescents will be randomised to care as usual or YP Face IT. Adolescents will complete questionnaires at baseline, at 13 weeks and at 25 weeks. Primary outcomes are differences in social anxiety and body esteem between YP Face IT and care as usual. Secondary outcomes are differences in aspects of self-worth, perceived stigmatisation, health-related quality of life, life engagement, appearance-related distress and depressive symptoms between the two groups. Ethics and dissemination Research ethics approval was obtained from the medical ethics review committee in Rotterdam (reference number MEC-2018-052/NL63955.078.18). Findings will be disseminated through academic peer-reviewed publications, conferences and newsletters to patient associations and participants of the study. Trial registration number The Netherlands Trial Register (NL7626)

Who Should Fill Out a Pediatric PROM? Psychometric Assessment From a Clinical Perspective in 567 Children With a Cleft

Background:The CLEFT-Q is a questionnaire developed for patients with a cleft lip and/or palate (CL/P). Numerous scales have been implemented as part of the ICHOM Standard Set for CL/P. Although validated for completion by patients only, clinicians noted that caregivers are often involved in completion of the scales. Aim of the study was to promote further standardization of Patient Reported Outcome Measures (PROMs) in pediatric patients by examining the preferences of patients and parents concerning the reporter type. Moreover, possible discrepancies in outcomes between reporter types were explored. Methods: Data from 567 patients with CL/P and their caregivers that completed scales of the CLEFT-Q questionnaire were collected. Reporter group sizes and proportions were examined at the ages of 8, 12, and 15 years to determine the preferred manner of completion. Mean outcomes were analyzed per scale at the 3 ages, and compared between the 3 reporter groups: “patient,” “caregiver,” and “together.” Results: In all age-groups, the majority completed the PROMs together. Concerning the reporter types per age-group, an upward trend was seen in the proportion of patients that completed the scales alone. In the caregiver group, a downward trend was observed, and the highest proportion of parents that completed the scales was found at age 8. No significant differences were found between the reporter types in any of the scales. Conclusion: Even if a PROM questionnaire is validated for patient report only, it is recommended to record the reporter type when a pediatric PROM is completed. In order to capture outcomes that represent the patient’s voice validly and reliably, though with support of the caregiver, a pediatric PROM should be filled out by the patient alone and thereafter evaluated with the caregiver(s). Concerning the CLEFT-Q, there seems to be demand for a validated parent-version of the scales

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