Caregiver Perspectives on the Daily Function of People Living With HNRNPH2-Related Neurodevelopmental Disorder: Developing a Conceptual Model

Introduction: Neurodevelopmental disorders are a group of conditions that start in childhood and lead to impairments in functioning. HNRNPH2-related neurodevelopmental disorder is an ultra-rare disorder in which individuals present with cognitive, behavioral, language and motor function impairments that often leads to reliance on their caregivers. Existing conceptual models of neurodevelopment are not specific to this ultra rare disorder and do not highlight the caregiver impact of living with HNRNPH2-related neurodevelopmental disorder. Purpose: The purpose of this study is to understand the caregiver perspective on the everyday functioning of people living with HNRNPH2-related neurodevelopmental disorder to generate a person-centered conceptual model. Methods: Semi-structured interviews with twenty caregivers of individuals with HNRNPH2-related neurodevelopmental disorder were conducted. The interviews were transcribed verbatim and analyzed using thematic analysis. An initial conceptual model was developed using an adapted grounded theory framework. Results: Twenty primary caregivers including 14 female caregivers and 6 male caregivers of females with HNRNPH2-related neurodevelopmental disorder living in 9 countries: United Kingdom (35%); United States (30%); Netherlands (10%); Denmark, France, Norway, Portugal, and Switzerland (each 5%) were interviewed. The defining concepts of the condition include cognition, communication, neurological, behavioral, visual, musculoskeletal/orthopedics, gastrointestinal and others. Individuals with HNRNPH2-related neurodevelopmental disorder have impacts on daily functioning including proximal impacts (activities), distal impacts (participation), and modifiers including personal and external factors. In light of caregiver’s major role in supporting the everyday functioning of individuals with HNRNPH2 a conceptual disease model was developed from the study data diagraming the defining concepts or symptoms, impacts on people living with HNRNPH2-related neurodevelopmental disorder and caregiver impacts. Practical Implications: This study highlights the unique features of HNRNPH2-related neurodevelopmental disorder impacting the everyday functioning of those living with the condition and impact on their caregivers. The person-centered conceptual model can be implemented by families to describe key features of the condition and their child’s current level of function; by clinicians and advocates to develop practical care consideration guidelines and policies; and by researchers to develop person centered assessments and treatments specifically for relevant and meaningful functions of individuals with HNRNPH2-related neurodevelopmental disorder

Prevalence of HIV and Associated Risks of Sex Work among Youth in the Slums of Kampala.

Purpose. The purpose of this study is to examine the prevalence of and risk factors for engaging in sex work among youth living in Kampala, Uganda. Methods. Analyses are based on a cross-sectional study (N = 1,134) of youth aged 12-18 years, living in the slums of Kampala, conducted in Spring of 2014. The analytic sample consisted of only sexually active youth (n = 590). Youth who reported engaging in sex work were compared to youth who did not report sex work. Multivariable analyses were conducted to examine factors associated with sex work. Results. Among the youth who had ever had sexual intercourse (n = 590), 13.7% (n = 81) reported engaging in sex work. Self-reported HIV prevalence was 13.9% among the total sample (n = 81) and 22.5% (n = 18) among youth engaged in sex work. Engaging in sex work was associated with being female (AOR 10.4; 95% CI: 3.9, 27.4), being an orphan (AOR 3.8; 95% CI: 1.7, 8.4), ever drinking alcohol (AOR 8.3; 95% CI 3.7, 19.0), and experiencing any rape (AOR 5.3; 95% CI: 2.9, 9.5). Discussion. The reported prevalence of sex work is high among youth in the slums of Kampala and is associated with high HIV prevalence, ever drinking alcohol, previously being raped, and being an orphan

Black, Brown, and Powerful: Freedom Dreams in Unequal Cities

In April 2018, the Institute on Inequality and Democracy convened scholars, activists, policy advocates, community residents, and nonprofit workers to share and discuss research and action pertaining to processes of inequality in Los Angeles. We sought to shed light on the entangled structures of oppression, including urban displacement, housing precarity, racialized policing, criminal justice debt, forced labor, and the mass supervision and control of youth. Through keynote talks, group dialogue, and workshops, we analyzed how in Los Angeles, and elsewhere, black and brown communities face multiple forms of banishment and exploitation ranging from the criminalization of poverty to institutionalized theft.The question of racial banishment has been an important one for the Institute since its inauguration two years ago. This year though, amidst the troubled times of Trumpism, we wanted to shift our focus from banishment to freedom. In the reports that follow, you will find many examples of what Robin D.G. Kelley, a key presence at the Institute, has famously called “freedom dreams.” Located in, and thinking from South Central Los Angeles, the event’s participants provide insight into organizing frameworks and resistance strategies that challenge exclusion and refuse subordination. From tenant organizing to debtors’ unions, from underground scholars to educational reparations, visions of freedom abound. The Institute on Inequality and Democracy is convinced that university-based research can, and must, support such freedom dreams. Such partnership – between the public university and social justice movements – requires careful attention to the difficult task of decolonizing the university. This mandate is evident throughout this collection of reports. There is no easy alliance between academic power and banished communities; there is no obvious solidarity between urban plans and freedom dreams. This event was intended to be a step towards building such alliances, especially by reconstructing the curriculum and canon of knowledge

Psychosocial Mediators of Perceived Stigma and Suicidal Ideation among Transgender Women

BACKGROUND: Transgender women (TGW) in the U.S. experience high rates of stigma, depression, and elevated rates of suicide. This study examined correlates of suicidal ideation and estimated the conditional indirect effects of perceived stigma and psychosocial mediators on suicidal ideation. METHODS: Using a cross-sectional study design, TGW (N = 92) were recruited through snowball sampling in Atlanta, Georgia. Structured interviews were conducted. Suicidal ideation was assessed by combining two variables that measured suicidal thoughts. Logistic regression models were performed to identify the potential risk and protective factors for suicidal ideation. We examined hypothesized psychosocial factors, including anxiety, depression, psychosocial impact of gender minority status, and substance use behaviors as potential mediators for the relationship between perceived stigma and suicidal ideation. All models were controlled for age, race, education, and homelessness. RESULTS: Suicidal ideation was reported by 33% (N = 30) of the study participants. In multivariable analysis, suicidal ideation was associated with sexual abuse (AOR = 3.17, 95% CI = 1.10-9.30), anxiety (AOR = 1.74, 95% CI = 1.10-2.73), family verbal abuse (AOR = 2.99, 95% CI = 1.10-8.40), stranger verbal abuse (AOR = 3.21, 95% CI = 1.02-10.08), and psychosocial impact of gender minority status (AOR = 3.42, 95% CI = 1.81-6.46). Partner support was found to be the protective factor for suicidal ideation (AOR = 0.34, 95% CI = 0.13-0.90). In the mediation analysis, the psychosocial impact of gender minority status mediated the relationship between perceived stigma and suicidal ideation. The estimated conditional indirect effect was 0.46, (95% CI = 0.12-1.11). CONCLUSION: Interventions that aim to reduce suicidal behaviors among TGW should address stigma, psychosocial impact of gender minority status, and different forms of violence and abuse

Socio-ecology of the Marsh Rice Rat (\u3ci\u3eOryzomys palustris\u3c/i\u3e) and the Spatio-Temporal Distribution of Bayou Virus in Coastal Texas

Along the southeastern coast of the United States of America (USA), the marsh rice rat (Oryzomys palustris) is the primary host for the hantavirus genotype Bayou. According to the socio-ecological model for a territorial, polygamous species, females should be distributed across space and time by habitat resources and predation risks, whereas males should space themselves according to the degree of female aggregation and reproductive synchrony. To investigate how females affect the male-male transmission paradigm of Bayou virus, rodents were captured, marked, released, and re-captured in two macrohabitat types across a 30-month period. Microhabitat cover variables were quantified around the individual trap stations. A geodatabase was created from habitat and rodent capture data and analysed in a geographical information system. The ratio of breeding to non-breeding females was ~1:1, with breeding females overly dispersed and non-breeding females randomly dispersed. Spatial analyses revealed both macro- and microhabitat preferences in females. Compared to sero-negatives, higher proportions of seropositive adult males were found consistently within closer proximities to breeding females but not to non-breeding females, indicating that male locations were not driven simply by habitat selection. Activities to acquire dispersed receptive females could be an important driver of Bayou virus transmission among male hosts. To date, socio-ecological theory has received little attention as an investigative framework for studying pathogen dynamics in small, solitary mammals. Herein, we describe an interdisciplinary effort providing a novel approach to elucidate the complexity of hantavirus trafficking and maintenance in rodent populations of a coastal marsh ecosystem

The state of adolescent sexual and reproductive health

In the 25 years since the 1994 International Conference on Population and Development, significant progress has been made in adolescent sexual and reproductive health and rights (ASRHR). Trend analysis of key ASRHR indicators at global, national, and subnational levels indicates that adolescent girls today are more likely to marry later, delay their first sexual experience, and delay their first childbirth, compared with 25 years ago; they are also more likely to use contraceptives. Despite overall progress, however, unequal progress in many ASRHR outcomes is evident both within and between countries, and in some locations, the state of adolescents' lives has worsened. Population growth in countries with some of the worst shortfalls in ASRHR mean that declining rates, of child marriage, for example, coexist with higher absolute numbers of girls affected, compared with 25 years ago. Emerging trends that warrant closer attention include increasing rates of ovarian and breast cancer among adolescent girls and sharp increases in the proportion of adolescents who are overweight or obese, which has long-term health implications. (C) 2019 Published by Elsevier Inc. on behalf of Society for Adolescent Health and Medicine

DATAMAN: A global database of nitrous oxide and ammonia emission factors for excreta deposited by livestock and land-applied manure

Nitrous oxide (N2 O), ammonia (NH3 ), and methane (CH4 ) emissions from the manure management chain of livestock production systems are important contributors to greenhouse gases (GHGs) and NH3 emitted by human activities. Several studies have evaluated manure-related emissions and associated key variables at regional, national, or continental scales. However, there have been few studies focusing on the drivers of these emissions using a global dataset. An international project was created (DATAMAN) to develop a global database on GHG and NH3 emissions from the manure management chain (housing, storage, and field) to identify key variables influencing emissions and ultimately to refine emission factors (EFs) for future national GHG inventories and NH3 emission reporting. This paper describes the "field" database that focuses on N2 O and NH3 EFs from land-applied manure and excreta deposited by grazing livestock. We collated relevant information (EFs, manure characteristics, soil properties, and climatic conditions) from published peer-reviewed research, conference papers, and existing databases. The database, containing 5,632 observations compiled from 184 studies, was relatively evenly split between N2 O and NH3 (56 and 44% of the EF values, respectively). The N2 O data were derived from studies conducted in 21 countries on five continents, with New Zealand, the United Kingdom, Kenya, and Brazil representing 86% of the data. The NH3 data originated from studies conducted in 17 countries on four continents, with the United Kingdom, Denmark, Canada, and The Netherlands representing 79% of the data. Wet temperate climates represented 90% of the total database. The DATAMAN field database is available at http://www.dataman.co.nz

Ammonia and nitrous oxide emission factors for excreta deposited by livestock and land-applied manure

Manure application to land and deposition of urine and dung by grazing animals are major sources of ammonia (NH3 ) and nitrous oxide (N2 O) emissions. Using data on NH3 and N2 O emissions following land-applied manures and excreta deposited during grazing, emission factors (EFs) disaggregated by climate zone were developed, and the effects of mitigation strategies were evaluated. The NH3 data represent emissions from cattle and swine manures in temperate wet climates, and the N2 O data include cattle, sheep, and swine manure emissions in temperate wet/dry and tropical wet/dry climates. The NH3 EFs for broadcast cattle solid manure and slurry were 0.03 and 0.24 kg NH3 -N kg-1 total N (TN), respectively, whereas the NH3 EF of broadcast swine slurry was 0.29. Emissions from both cattle and swine slurry were reduced between 46 and 62% with low-emissions application methods. Land application of cattle and swine manure in wet climates had EFs of 0.005 and 0.011 kg N2 O-N kg-1 TN, respectively, whereas in dry climates the EF for cattle manure was 0.0031. The N2 O EFs for cattle urine and dung in wet climates were 0.0095 and 0.002 kg N2 O-N kg-1 TN, respectively, which were three times greater than for dry climates. The N2 O EFs for sheep urine and dung in wet climates were 0.0043 and 0.0005, respectively. The use of nitrification inhibitors reduced emissions in swine manure, cattle urine/dung, and sheep urine by 45-63%. These enhanced EFs can improve national inventories; however, more data from poorly represented regions (e.g., Asia, Africa, South America) are needed

İştahın açılması : küresel kalkınma için veri becerileri öğrenci eğitim programı eĞİTMEN el kitabı

Training for statistics in a developments perspective. The project developed new data skills instructor and student learning resources informed by insights from global development professionals – You can find out more about the training programme design, the research that underpinned it, and how to access the open access resources in the Training Programme section of this website. In addition, the team have compiled Career Profiles documenting the career journeys of professionals who use data skills in global development to help inspire aspiring development professionals. Bu eğitmen el kitabı, Avrupa Birliği ERASMUS+ programı tarafından 2019-1-UK01‐KA203‐061973 hibe anlaşması kapsamında ortaklaşa finanse edilen "Kalkınma Sayımları: Uluslararası Kariyer için Veri Becerileri" projesinin bir çıktısıdır. Proje, Gazi Üniversitesi (Türkiye), L-Università ta’ Malta (Malta) ve Universidad Nacional de Educación a Distancia (UNED, İspanya) işbirliğiyle İngiltere'deki Gloucestershire Üniversitesi tarafından yönetilmiştir.peer-reviewe

Bringing about the data revolution in development: what data skills do aspiring development professionals need?

The post-2015 agenda calls for a ‘data revolution in development’ and recognises that statistical capacity amongst the workforce is a prerequisite for achieving it. Universities have a critical role to play in building this capacity. This paper reports insights from in-depth interviews with development professionals in Malta, Spain, Turkey and the United Kingdom about current and future data skills needs. It presents recommendations on data skills training for aspiring development professionals informed by this evidence, with a particular focus on curriculum in social science related undergraduate programmes at universities