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

A Head-to-Head Comparison of the Standard Quality-Adjusted Life Year Model With the Annual Profile Model

Objectives: The standard quality-adjusted life year (QALY) model (SQM) assumes time-utility independence within constant health states and additive independence when health varies over time. The validity of SQM has been challenged through reported violations of these assumptions. An alternative approach that relaxes these assumptions is to assign a single valuation to an entire health profile: an integral assessment of disease severity over time. Here, we compare SQM with the annual profile model (APM) and test SQM for additive independence. Methods: Eighty-two respondents valued 6 episodic conditions, including 4 of short duration, with SQM and APM, using the time trade-off method. Inter-rater reliability was assessed using intraclass correlation coefficients. Face validity was tested by asking respondents how well they were able to imagine the health states under SQM and APM. We calculated SQM QALY values for a 1-year time period, allowing for a direct comparison with APM values. For the short-term conditions we expected higher QALY values for SQM, violating additive independence. Results: APM showed higher interrater reliability (intraclass correlation coefficient of 0.53 vs 0.18, respectively) and better face validity than SQM, with 6% (APM) vs 21% (SQM) of all respondents reporting difficulties. Additive independence of SQM was violated in 5 of the 6 conditions (including the 4 short duration health states), with higher QALY values under SQM (mean difference 0.04). Conclusion: The impact of short-term conditions is systematically underestimated under SQM when compared to a health profile model. APM is a less restrictive model and demonstrates better validity

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

Ethnic background and differences in health care use: a national cross-sectional study of native Dutch and immigrant elderly in the Netherlands

BACKGROUND: Immigrant elderly are a rapidly growing group in Dutch society; little is known about their health care use. This study assesses whether ethnic disparities in health care use exist and how they can be explained. Applying an established health care access model as explanatory factors, we tested health and socio-economic status, and in view of our research population we added an acculturation variable, elaborated into several sub-domains. METHODS: Cross-sectional study using data from the "Social Position, Health and Well-being of Elderly Immigrants" survey, conducted in 2003 in the Netherlands. The study population consisted of first generation immigrants aged 55 years and older from the four major immigrant

Evaluating an integrated primary care approach to improve well-being among frail community-living older people

Background: A major challenge in primary healthcare is the substantial increase in the proportion of frail community-dwelling older persons with long-term conditions and multiple complex needs. Consequently, a fundamental transformation of current models of primary care by means of implementing proactive integrated care is necessary. Therefore, an understanding of the effects of integrated primary care approaches and underlying mechanisms is essential. This article presents the design of a theory-based evaluation of an integrated primary care approach to improve well-being among frail community-living older adults, which is called "Finding and Follow-up of Frail older persons" (FFF). First, we present a theoretical model to facilitate a sound theory-guided evaluation of integrated primary care approaches for frail community-dwelling older people. The model incorporates interrelated elements of integrated primary care approaches (e.g. proactive case finding and self-management support). Efforts to improve primary care should integrate these promising components to assure productive patient-professional interactions and to improve well-being. Moreover, cognitive and behavioral components of healthcare professionals and patients are assumed to be important. Second, we present the design of the study to evaluate the FFF approach which consists of the following key components: (1) proactive case finding, (2) case management, (3) medication review, (4) self-management support, and (5) working in multidisciplinary care teams. Methods: The longitudinal evaluation study has a matched quasi-experimental design with one pretest and one posttest (12 month follow-up) and is conducted in the Netherlands between 2014 and 2017. Both quantitative and qualitative methods are used to evaluate effectiveness, processes, and cost-effectiveness. In total, 250 frail older persons (75 years and older) of 11 GP (general practitioner) practices that implemented the FFF approach are compared with 250 frail older patients of 4 GP practices providing care as usual. In addition, data are collected from healthcare professionals. Outcome measures are based on our theoretical model. Discussion: The proposed evaluation study will reveal insight into the (cost)effectiveness and underlying mechanisms of the proactive integrated primary care approach FFF. A major strength of the study is the comprehensive evaluation b

Оценка человеческого капитала промышленного предприятия в условиях инновационного развития

Запропоновано методичний підхід до оцінки людського капіталу промислового підприємства для різних видів інновацій. Обґрунтовано вибір методів оцінки елементів людського капіталу для різних категорій персоналу промислового підприємства. Ключові слова: оцінка, людський капітал, метод, вид інновації, елемент.Предложен методический подход к оценке человеческого капитала промышленного предприятия для различных видов инноваций. Обоснован выбор методов оценки элементов человеческого капитала для различных категорий персонала промышленного предприятия. Ключевые слова: оценка, человеческий капитал, метод, вид инновации, элемент.The methodical approach to evaluation of an industrial enterprise’s human capital under different types of innovations is offered. The choice of methods for evaluating human capital’s elements is grounded considering different categories of personnel of the industrial enterprise. Keywords: evaluation, human capital, method, type of innovations, element

Effects of an integrated neighborhood approach on older people's (health-related) quality of life and well-being

Background: Integrated neighborhood approaches (INAs) are increasingly advocated to reinforce formal and informal community networks and support community-dwelling older people. They aim to augment older people's self-management abilities and engage informal networks before seeking professional support. INAs' effectiveness however remains unknown. We evaluated an INA's effects on older people's (health-related) quality of life (HRQoL) and well-being in Rotterdam. Methods: We used a matched quasi-experimental design comparing INA with "usual" care and support. Community-dwelling frail older (70+ years) people and frailty- and gender-matched control subjects (n = 186 each) were followed over a 1-year period (measurements at baseline and 6 and 12 months). Primary outcomes were HRQoL (EQ-5D-3L, SF-20) and well-being [social production function instrument for the level of well-being (SPF-IL)]. The effect of INA was analysed using an "intention to treat" and an "as treated" approach. Results: The results indicated that pre-intervention participants had lower incomes and were significantly older, more often single, less educated and more likely to have ≥1 disease than control subjects; they had lower well-being, physical functioning, role functioning, and mental health. Generalized linear mixed modelling of repeated measurements revealed no substantial difference in well-being or HRQoL between the intervention and control group after 1 year. The small differences we did find in the intention to treat group though were in favour of the control subjects (SF-20 = 6.98, 95 % confidence interval [CI] = 2.45-11.52; SPF-IL =.09, 95 % CI =.01-.17). However, the difference in well-being (SPF-IL) disappeared in the as treated analysis. Conclusions: The lack of effects of INA highlights the complexity of integrated care and support initiatives. Barriers associated with meeting the complex, varied needs of frail older people, and those related to dynamic political and social climates challenge initiative effectiveness. Trial registration The research was supported with a grant provided by the Netherlands Organisation for Health Research and Development (ZonMw, project number 314030201) as part of the National Care for the Elderly Programme