Annastasia Ediati

Body Image and Sexuality in Indonesian Adults with a Disorder of Sex Development (DSD)

In Indonesia, disorders of sex development (DSDs) are not well recognized and medical care for affected individuals is scarce. Consequently, many patients live with ambiguous genitalia and appearance. We compared reported outcomes on body image, sexual functioning, and sexual orientation of 39 adults with DSDs (aged 18 to 41) and 39 healthy controls matched for gender, age, and residential setting (urban, suburban, rural). Differences in gender and treatment status (treated or untreated) were also explored. On body image, adults with DSDs reported dissatisfaction with sex-related body parts. Compared to the matched controls, women with DSDs reported greater sexual distress, and men with DSDs reported lower erectile and ejaculation frequencies, and more dissatisfaction with sexual life but not with sexual desire and activities. Men with DSDs who had undergone genital surgery reported higher erectile and ejaculation frequencies than untreated men. More women than men in the DSDs group reported a nonexclusive heterosexual orientation. DSDs and infertility had a great impact on sexuality. Fear of ostracism complicated DSD acceptance. Findings were compared to those of Western studies. Based on these results, education about DSDs and their psychosexual consequences may help reduce the sexual distress and problems in adults with DSDs and improve quality of life.

Emotional and behavioral problems in late-identified Indonesian patients with disorders of sex development

OBJECTIVE The aim of this study is to investigate emotional and behavioral problems among Indonesian patients with disorders of sex development (DSD) who recently came under clinical management. As diagnostic procedures and treatment had been delayed, patients progressively developed ambiguous bodies, difficult to conceal from outsiders. METHOD We compared 118 Indonesian patients with DSD aged 6-41 years (60 children, 24 adolescents, 34 adults) and 118 healthy control subjects matched for age, gender, and residential settings. We used the Child Behavioral Checklist (CBCL), Youth Self-Report (YSR), and Adult Self-Report (ASR) to examine differences between patient and control groups as well as differences within patients groups. RESULTS On the CBCL, parents of young children with DSD reported significantly more emotional and behavioral problems than parents of matched control. Parents of daughters with CAH reported that their daughters withdrew themselves from social interactions. On the ASR, adults with DSD reported significantly more internalizing problems than controls, particularly anxiety and depression. No other differences in emotional functioning were found across different diagnostic groups. CONCLUSIONS Indonesian patients with DSD who were untreated for most of their lives suffered more emotional and behavioral problems than matched controls. Differences and similarities between our findings and observations in patients from Western countries will be discussed.

Gender Development in Indonesian Children, Adolescents, and Adults with Disorders of Sex Development

In most Western countries, clinical management of disorders of sex development (DSD), including ambiguous genitalia, begins at diagnosis soon after birth. For many Indonesian patients born with ambiguous genitalia, limited medical treatment is available. Consequently, affected individuals are raised with ambiguous genitalia and atypical secondary sex characteristics. We investigated gender identity and gender role behavior in 118 Indonesian subjects (77 males, 41 females) with different types of DSD in comparison with 118 healthy controls matched for gender, age, and residential setting (rural, suburban, or urban). In Study 1, we report on methodological aspects of the investigation, including scale adaptation, pilot testing, and determining reliability and validity of measures. In Study 2, we report on gender development in 60 children (42 boys, 18 girls), 24 adolescents (15 boys, 9 girls), and 34 adults (19 men, 15 women) with DSD. The majority of participants with DSD never received any medical or surgical treatment prior to this study. We observed a gender change in all age groups, with the greatest incidence in adults. Among patients who changed, most changed from female to male, possessed a 46,XY karyotype, and had experienced significant masculinization during life. Gender identity confusion and cross-gender behavior was more frequently observed in children with DSD raised as girls compared to boys. Puberty and associated masculinization were related to gender problems in individuals with 46,XY DSD raised female. An integrated clinical and psychological follow-up on gender outcome is necessary prior to puberty and adulthood.

Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers

Background. Thalassaemia has become a major public health issue in Indonesia. It has been estimated that up to 10% of the population carries a gene associated with beta-thalassaemia. Currently, there is no formal recommendation for thalassaemia screening. This study aimed to explore awareness of thalassaemia, and to explore attitudes regarding carrier testing among Javanese mothers. Methods. A quantitative questionnaire, designed using constructs of the Theory of Planned Behaviour, was applied cross-sectionally. Results. Out of 191 mothers who were invited, 180 agreed to participate (RR = 94%), of whom 74 had a child affected with thalassaemia. Both attitudes towards receiving information about thalassaemia, and attitudes towards carrier testing were very positive. Awareness of thalassaemia was poor. Mothers, both those with and without an affected child, had barely heard of thalassaemia, nor of carrier testing. However, all mothers, including those with an affected child expressed high levels of interest in carrier testing. Respondents did not perceive that they had any control over carrier testing, and feared stigmatization and being discriminated against if their carrier status was identified. Attitudes towards carrier testing explained 23% of future reproductive intentions, in addition to perceived stigmatization, education level and ‘mothers age’ (R 2=0.44; p=0.001). Conclusion. Responding mothers expressed high levels of interest in receiving information on both thalassaemia and carrier testing. The less educated and the more deprived they were, the keener they were to receive this information. Overall, awareness of thalassaemia was low. Even mothers with affected children seemed unaware of the inheritance pattern and the recurrent risk of having an affected child in a subsequent pregnancy, showing the need for genetic counselling in Indonesia. It is therefore recommended not only to raise awareness about thalassaemia, but to improve the education of healthcare professionals as well.

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

Objective Disorders in sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Promoting counselling to facilitate acceptance and coping is important yet equality of access is unknown. This study investigated the modalities of psychosocial care provided in centres of DSD care. Methods An international survey conducted among 93 providers of psychosocial care, identified through clinical networks, registries and professional forums. Results Forty-six respondents from 22 different countries filled out the survey (49%). Most respondents (78%) were based in hospital-based expert teams. Referrals came from paediatric endocrinologists (76%), gynaecologists (39%) and paediatric urologists (37%). Psychological counselling was most frequently given to parents (74%), followed by children (39%), adolescents (37%) and adults (11%) and was most frequently focused on coping and acceptance of DSD (54%), education (52%), the atypical body (39%) and genital (41%), decisions on genital surgery (33%), complications with sexual intercourse (29%), disclosure (28%) and acceptance of infertility (11%). Respondents most frequently observed DSD related confusion about gender (54%), acceptance of cross gender behaviour (50%), anxiety (43%) and sadness and depression (38%). Conclusions Most psychosocial care is provided to parents. It is assumed that parental support is important as acceptance is conditional to become affectionate caretakers. Although it may be more difficult for youngsters to communicate about their condition and treatment, providing opportunity to bring up issues that are important for them, is imperative. Clinicians and parents should be aware that parental and patients’ interests may not correspond completely. Psychosocial management should also include transition and adult care.

Attitudes Towards Sexuality in Males and Females with Intellectual Disabilities: Indonesia Setting

Introduction : sexual and reproductive rights in individuals with intellectual disabilities (ID), particularly in developing countries, are often neglected. Although affected individuals never complained, the problems were found augmented from the affected families. Over the last two decades, parents and professionals acknowledged sexual and reproductive right and try to accommodate these needs. Indonesia, a developing country with a strong religious and culture beliefs may has different perspectives on attitudes towards sexuality in individuals with ID which respect the sexual and reproductive right augmented from the affected family. The aimed of this study was to explore the attitudes towards sexuality on individuals with ID. The findings are expected to contribute to the movement in recognizing sexual and reproductive health and rights (SRHR) in individuals with ID. Methods : thirty participants were included in this study consisted of supporting staffs of rehabilitation center for disabled individual, parents, religious leaders and community. Participants fulfilled the two sets of Attitude to Sexuality Questionnaires towards individuals with ID (ASQ-ID). Results : the attitudes towards sexuality in males were found similar with females with ID, age did not play a role in the attitude towards sexuality in ID. Indonesian attitudes towards sexuality in individuals with ID was found the most conservative compared to other countries with the mean of sexual right was 3.7±0.22, parenting was 3.5±0.30, non-reproductive sexual behavior was 3.4±0.49, and self-control was 3.4±0.73. Conclusion : the attitudes towards sexuality in individual with ID is somewhat negative, strong culture and religious beliefs /and values may have strong influence.

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.

Adolescents’ Anxiety in the Coastal Region of Central Java, Indonesia

Background: Emotional problems are commonly reported among children, adolescents, and adults. It is known that emotional problems in children who are not treated properly can continue to cause disorder in adolescence and adulthood. This study aimed to investigate anxiety on adolescents, particularly high school and undergrad-uate students, and to compare different subscales of anxiety across educational level. Method: A total of 378 adolescents (286 high school students and 99 undergraduate students; Mage = 16.75; SD = 1.547) participated in this study. Data were collected using the Indonesian version of the Screen for Child Anxiety Disorders (SCARED; 26 items; = .880). Total score and subscale scores were compared between high school students with under-graduate students. Results: The results of independent samples t-test showed that anxiety disorder and panic disorder/school avoidance were more frequently reported by undergraduate students than high school students. However, no significant differences were found in view of generalized anxiety disorder (GAD) and social anxiety. Conclusion: The study findings indicate different profile of anxiety reported by students in the higher level of education that warrant earlyIP: prevention182.255.and1.5interventionOn:Wed,program02Maytailored2018to03:25:39theeducational setting. Awareness on early referral of anxiety problemsCopyright:amongAmericanstudentsshouldScientificberaisedPublishersamongschool principals as well as dean faculties prior to the escalated emotional problemsDelivered.ThebystudyIngentafindings also recommend the need to design a psycho-educational program to reduce anxiety on the undergraduate as well as high school students. Keywords: Anxiety, Adolescents, Emotional Problems, Undergraduate, High School, Students, Coastal Region

Genetic Counseling to Reduce the Level of Depression in Parents of Children with Thalassemia Major

Thalassemia major is a chronic disease that the prevalence in Indonesia is increasing from 3,653 cases in 2006 to 5,501 cases in 2011. Besides having an impact on the patient’s health physically, thalassemia major also gives psychological consequences, such as depression, on parents of patients with thalassemia major. The aim of the study to investigate the impact of genetic counseling in reducing depression level on parents of children with thalassemia major. This was a quasi-experimental study using a pretest-posttest group design. In total, 44 parents met the inclusion criteria. The parents received genetic counselling to better understand and cope with thalassemia major. Beck Depression Inventory II was used to measure parental depression level before and after genetic counselling was conducted. The Wilcoxon test as well as paired- sample t-test were applied for comparison analysis. The majority of participants (65.91%) reported lower depression after they received the genetic counselling session (Meanpre=16.31; Meanpost=11.50; p<0.001). The results highlight the positive impact of a genetic counselling on reducing depression on parents of children with thalassemia major.

Sociocultural aspects of disorders of sex development

Disorders of sex development (DSD) is a congenital condition in which the development of chromosomes, gonads, hormones, and reproductive structures are atypical. DSD brings with it a psychological impact on the affected individual and their families. The consensus statement on management of DSD strongly advised an integrated and multidisciplinary approach in providing care to the affected individuals. Studies have been conducted focusing on medical intervention, and more recently, there is increasing attention paid to psychological aspects of DSD. However, studies reporting cultural aspects of DSD are lacking. This review provides an overview on how culture impacts the affected individuals in coping with DSD and making decisions with regard to gender assignment or reassignment, help-seeking behavior for medical treatments, attitudes toward medical treatment, religious beliefs, and values concerning marriage and fertility. The involvement of social scientists is needed to study sociocultural aspects of DSD from more diverse cultures, to help affected individuals and their families in gaining better social acceptance. Birth Defects Research (Part C) 108:380-383, 2016.