Search results for: familial

Authors: Riyona Chetty, Raisuyah Bhagwan, Nalini Govender

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Background: A myriad of physical, psychosocial, and environmental sequelae are associated with limb loss. However, there is a paucity of empirical South African data, which focuses on these sequelae, how they interface with the amputee’s quality of life as well as the challenges they experience following amputation. Objective: This study sought to explore the biopsychosocial effects of amputation and how amputation affected the quality of life of transtibial amputees. Setting: Participants were recruited from a medical facility, under the KwaZulu-Natal Department of Health in South Africa. Methods: A qualitative approach guided this study. Data was collected using one-on-one interviews with 14 unilateral transtibial amputees. Data was analysed thematically. Results: Five broad themes emerged from the inquiry, which captured amputees’ experiences of phantom limb pain, body image disturbances, and their challenges related to adapting to daily activities. Participants also expressed the salience of familial support as well as the importance of psychological interventions to cope. Conclusion: The findings suggested that support networks and professional psychological intervention are imperative in facilitating successful adjustment to the amputation experience. Raising awareness of limb loss in both, rural and urban settings may help reduce the stigma attached to it. Contribution: Quality of life comprises several domains, namely physical, psychological, environmental, and social albeit limited local and international data exists regarding the environmental and social effects. This study brought to the fore the positive and negative effects of amputation in each domain, as well as various strategies that facilitate successful adjustment to amputation.

Keywords: amputation, quality of life, biopsychosocial, phantom limb pain, body image, support

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Authors: Virakti Dhaval Shah

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Advances in technology and the changes in lifestyle and work expectations amid the COVID-19 pandemic are requiring changes to vocational assessment, provision of vocational training, and identification of job matches for individuals with intellectual disability. Vocational assessment involves the assessment of interests, skills, abilities, and strengths/weaknesses, as well as a detailed understanding of healthcare, familial, social, community, workplace-related and policy-level protective and risk factors impacting the individual. In India, vocational assessment procedures such as interviews play a major role in vocational placement today. Unfortunately, many of the most widely used vocational assessment instruments in India were developed in the 1970s to 2000s and have not been revised since. Hence, there is a dire need to update existing tools and prepare a structured approach for vocational service providers to meet the unique employment needs of individuals with intellectual disabilities. To address this need, this project designed a multi-domain assessment toolkit for a structured approach to vocational assessment, training, and job placement for individuals with intellectual disabilities in India. Methods included conducting an empirical review of the available tools currently in use in India for the vocational assessment of persons with intellectual disabilities. Domains addressed in the instrument review were organized into a structured system, and additional items related to contemporary technology, pandemic-related experiences of persons with disabilities, and changes in lifestyle and work expectations due to the pandemic were added. Items assessing behaviors, provision of vocational training, and identification of job matches for individuals with intellectual disabilities were developed. The proposed tool has the potential to benefit organizations working with and preparing individuals with intellectual disabilities to find successful employment by undertaking a structured approach to vocational assessment, rehabilitation, training, and placement. It can be particularly useful for guiding new professionals doing vocational rehabilitation in India.

Keywords: intellectual disability, rehabilitation, vocational assessment, vocational rehabilitation

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Authors: I. Boroňová, J. Bernasovská, J. Kmec, E. Petrejčíková

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Dilated cardiomyopathy (DCM) is a primary myocardial disease, it is characterized by progressive systolic dysfunction due to cardiac chamber dilatation and inefficient myocardial contractility with estimated prevalence of 37 in 100 000 people. It is the most frequent cause of heart failure and cardiac transplantation in young adults. About one-third of all patients have a suspected familial disease indicating a genetic basis of DCM. Many candidate gene studies in humans have tested the association of single nucleotide polymorphisms (SNPs) in various genes coding for proteins with a known cardiovascular function. In our study we present the results of ZBTB17 gene rs10927875 polymorphism genotyping in relation to dilated cardiomyopathy in Slovak population. The study included 78 individuals, 39 patients with DCM and 39 healthy control persons. The mean age of patients with DCM was 50.7±11.5 years; the mean age of individuals in control group was 51.3±9.8 years. Risk factors detected at baseline in each group included age, sex, body mass index, smoking status, diabetes and blood pressure. Genomic DNA was extracted from leukocytes by a standard methodology and screened for rs10927875 polymorphism in intron of ZBTB17 gene using Real-time PCR method (Step One Applied Biosystems). The distribution of investigated genotypes for rs10927875 polymorphism in the group of patients with DCM was as follows: CC (89.74%), CT (10.26%), TT (0%), and the distribution in the control group: CC (92.31%), CT (5.13%), and TT (2.56%). Using the chi-square (χ2) test we compared genotype and allele frequencies between patients and controls. There was no difference in genotype or allele frequencies in ZBTB17 gene rs10927875 polymorphism between patients and control group (χ2=3.028, p=0.220; χ2=0.264, p=0.608). Our results represent an initial study, it can be considered as preliminary and first of its kind in Slovak population. Further studies of ZBTB17 gene polymorphisms of more numerous files and additional functional investigations are needed to fully understand the role of genetic associations.

Keywords: dilated cardiomyopathy, SNP polymorphism, ZBTB17 gene, bioscience

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Authors: Jocelyn Jones

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The objective of this literature review is to provide an assessment of the current literature concerning gender-based violence (GBV) within indigenous communities in Argentina and Costa Rica, and various public intervention strategies that have been implemented to counter the increasing rates of violence within these populations. The review will address some of the unique challenges and contextual factors influencing the prevalence and response to such violence, including the enduring impact of colonialism on familial structures, community dynamics, and the perpetuation of violence. Drawing on indigenous feminist perspectives, the paper critically assesses the intersectionality of gender, ethnicity, and socio-economic status in shaping the experiences of indigenous women, men, and gender-diverse individuals. In comparing the two nations, the literature review identifies commonalities and divergences in policy frameworks, legal responses, and grassroots initiatives aimed at addressing GBV. Regarding the assessment of the efficacy of existing interventions, the paper will consider the role of cultural revitalization, community engagement, and collaborative efforts between indigenous communities and external agencies in the development of future policies. Moreover, the review will highlight the importance of decolonizing methodologies in research and intervention strategies, and the need to emphasise culturally sensitive approaches that respect and integrate indigenous worldviews and traditional knowledge systems. Additionally, the paper will explore the potential impact of colonial legacies, resource extraction, and land dispossession on exacerbating vulnerabilities to GBV within indigenous communities. The aim of this paper is to contribute to a more in-depth understanding of GBV in indigenous contexts in order to promote cross-cultural learning and inform future research. Ultimately, this review will demonstrate the necessity of adopting a holistic and context-specific approach to address gender-based violence in indigenous communities.

Keywords: gender based violence, indigenous, colonialism, literature review

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Authors: Md. Rasel Mia, Ashik Billah

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The empowerment of girls and youth in Bangladesh is a demanding issue in today's digital age, where online learning and education have become integral to personal and societal development. This abstract explores the critical importance of creating a secure online environment for girls and youth in Bangladesh, emphasizing the transformative impact it can have on their access to education and knowledge. Bangladesh, like many developing nations, faces gender inequalities in education and access to digital resources. The creation of a safe digital space not only mitigates the gender digital divide but also fosters an environment where girls and youth can thrive academically and professionally. This manuscript draws attention to the efforts through a mixed-method study to assess the current digital landscape in Bangladesh, revealing disparities in phone and internet access, online practices, and awareness of cyber security among diverse demographic groups. Moreover, the study unveils the varying levels of familial support and barriers encountered by girls and youth in their quest for digital literacy. It emphasizes the need for tailored training programs that address specific learning needs while also advocating for enhanced internet accessibility, safe online practices, and inclusive online platforms. The manuscript culminates in a call for collaborative efforts among stakeholders, including NGOs, government agencies, and telecommunications companies, to implement targeted interventions that bridge the gender digital divide and pave the way for a brighter, more equitable future for girls and youth in Bangladesh. In conclusion, this research highlights the undeniable significance of creating a safe digital space as a catalyst for the empowerment of girls and youth in Bangladesh, ensuring that they not only access but excel in the online space, thereby contributing to their personal growth and the advancement of society as a whole.

Keywords: collaboration, cyber security, digital literacy, digital resources, inclusiveness

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Authors: Jakia Rajoana

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The aim of this paper is to examine the role of women entrepreneurs in bringing about sustainable rural tourism (SRT) development in Sundarbans area of Bangladesh. Theoretically, it draws upon empowerment and entrepreneurial marketing concepts. Women entrepreneurship development and lack of empowered women as role models is an important issue for developing economies in South Asia. Despite the substantial role women play in rural economy of Sundarbans, their contribution remains overlooked as enterprises led by them are run on an informal basis and their business acumen is not taken seriously both by their families and society at large. Studies on SRT fail to engage in sufficient depth with the term applied in this paper as ‘invisible women on the margins’ who run their enterprises with no formal training or societal/familial support. Moreover, the link between their (non) tourism enterprise and their empowerment remains under-theorized. Thus empirically, this research seeks to fill a significant gap by focusing on a considerably under-researched Sundarbans region. Methodologically, this study follows a qualitative research design using visual ethnographic approach. Participant observation, semi-structured interviews, and documentation are the primary data collection instruments in three coastal communities – Munshigonj, Burigoalini and Gabura – in the Sundarbans area. By focusing on the narratives of these under-investigated women, this work aims to provide in-depth and nuanced insights into salient issues on marginal communities experience from rural women’s perspectives. Initial findings illustrate that the Sundarbans women have low income due to no or little education. In addition, socio-cultural and religious factors also restrict the scope of their extensive contribution to workplace. In addition, physical and social violence which is a common occurrence for these women inhibits their agency and contributes to their disempowerment.

Keywords: gender, empowerment, entrepreneurial marketing, sustainable rural tourism, Sundarbans

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Authors: Victorine Mbong Shu

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Very little research exists on family sex and sexuality communication and identity formation and how communication is helping adolescents in forming their sexual identities in South Africa. This study is designed to explore the impact of sexual communication in African families and the dynamics that influence the openness or closedness of adolescent sexual identities. The primary objectives of this study are threefold; to understand how sexuality communication in African families impacts the closedness and/or openness of adolescent African identities; to explore the nature of African children's sexuality given the status of their families’ communications on sex; to describe how parental or adult sexual knowledge, attitudes, values of sex, etc. are translated to children in African families, if at all. This study seeks answers to challenges faced by African parents and caregivers of adolescent children in South Africa regarding sex-sexuality communication and their shifting identities in different spaces. Its outcome seeks to empower these families on how to continue to effectively communicate sex and sexuality at different stages and circumstances. Two sets of people are interviewed separately in order to explore issues of familial communication and how to understand how together with religion and culture, adolescents are socialised to form the social and gender identities that they take to adulthood. They were parents of adolescents and young adult children who spoke in retrospect on when they were adolescents. The results of this study will fill knowledge gaps considering the chosen theory of communication that gives clarity to the topic of sex and sexuality communication in African families in South Africa and the dynamics of privacy that influence identity formation. A subset of the 40 conversations, 5 female parents, 5 male parents, 5 young female adults, and 5 male young adults, was used for this analysis. The preliminary results revealed five emergent themes informed by research questions and the theoretical framework of this study: Open communication, Discomfort discussing sex and sexuality, The importance of sex communication to African parents, Factors influencing African families’ communication about sex and sexuality and Privacy and boundaries.

Keywords: sex, sexuality, communication, African families, adolescents

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Authors: C. A. Bradley, D. Patsios, D. Berridge

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This paper presents evidence to better understand the risk and protective factors related to sibling conflict and the patterns of association between sibling conflict and negative adjustment outcomes by incorporating additional familial and societal factors within statistical models of risk and adjustment. It was conducted through the secondary analysis of a large representative cross-sectional dataset of children in the UK. The original study includes proxy interviews for young children and self-report interviews for adolescents. The study applies an ecological systems framework for the analyses. Hierarchical regression models assess risk and protective factors and adjustment outcomes associated with sibling conflict. Interactions reveal differential effect between contextual risk factors and the social context of influence. The general pattern of findings suggested that, although factors affecting likelihood of experiencing sibling conflict were often determined by child age, some remained consistent across childhood. These factors were often conditional on each other, reinforcing the importance of an ecological framework. Across both age-groups, sibling conflict was associated with siblings closer in age; male sibling groups; most advantaged socio-economic group; and exposure to community violence, such as witnessing violent assault or robbery. The study develops the evidence base on the influence of ethnicity and socio-economic group on sibling conflict by exploring interactions between social context. It also identifies key new areas of influence – such as family structure, disability, and community violence in exacerbating or reducing risk of conflict. The study found negative associations between sibling conflict and young children’s mental well-being and adolescents' mental well-being and anti-social behaviour, but also more context specific associations – such as sibling conflict moderating the negative impact of adversity and high risk experiences for young children such as parental violence toward the child.

Keywords: adjustment, conflict, ecological systems, family systems, risk and protective factors, sibling

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Authors: Ahn Christine Myunghee, Sim Wonjin, Cho Kristina, Ahn Mira, Hong Yeju, Kwok Jihae, Lim Sooyeon, Park Hansol

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With a sharp increase in the prevalence rate for mental health issues in Korea, there is a need for specific and effective intervention strategies in counseling and psychotherapy for use with Korean clients. With the cultural emphasis on restraining emotional expression and not disclosing personal and familial problems to outsiders, clients often find it difficult to discuss their emotional issues even to therapists. Exploring a client’s internal psychological processes bypassing this culture-specific mode of therapeutic communication often becomes a challenge in the therapeutic setting. Given this socio-cultural context, the purpose of the current study was to investigate the effectiveness of using dream work to individuals in Korea. The current study conducted one 60-90 minute dream session and analyzed the dream content of 39 Korean young adults to evaluate the effectiveness of the Hill dream model in accessing the intra-psychic materials, determining essential emotional themes, and learning how the individuals interpreted the contents of their dreams. The transcribed data, which included a total of 39 sessions from 39 volunteer university students, were analyzed by the Consensus Qualitative Research (CQR) approach in terms of domains and core ideas. Self-report measures on Dream Salience, Gains from Dream Interpretations and the Session Evaluation Scale were administered before and after each of their dream sessions. The results indicated that dream work appears to be an effective way to understand unconscious motivations, thoughts, and feelings related to a person’s sense of self, and also how these people relate to other people. Current findings need to be replicated with clients referred for counseling and psychotherapy to determine if the dream work is an appropriate and useful intervention in counseling settings. Limitations of the current study and suggestions for future follow-ups are included in the discussion.

Keywords: dream work, dream interpretation, Korean, young adults, CQR

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Authors: Nazli Kazanoglu

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Reconciliation of work and family life has been an area of interest within the academic as well as in the political debate for more than three decades. With the dramatic changes in the extent to which women and men contribute to unpaid domestic work and paid employment, the reconciliation of work and family life issues have become more prominent than ever before. And they have begun to enjoy an increased attention of policy makers both at the EU and national levels. Over the last three decades the EU has initiated numerous equality programs and strategies and roadmaps regarding reconciliation of work and family life, though particularly because of the crisis and increasing willingness of achieving the EUs target of seventy five per cent of men and women in employment by 2020, those programs, strategies and roadmaps emphasized on eradicating womens familial burdens while entering labor market and providing them as equal opportunities as their male counterparts have. Reconciliation of work and family life policies thus bit by bit moved away from the objectives with a strong commitment to ensuring gender equality towards employment objectives. This paper is thus an endeavor to look at the nature of EU reconciliation of work and family life policies from the angle of gender equality. More precisely relying on the feminist literature, this paper rests on the assumption that reconciliation of work and family policies should provide the sufficient measures indeed with a more emphasis on endorsing gender equality rather than economic concerns and prioritizes two inter-related aspects while evaluating the gender equality of reconciliation of work and family life policies. First providing free choice to women in terms of their family and work lives and second challenge the unequal division of labor at home. In that sense, it investigates the nature of the changing uses and meanings of gender equality in reconciliation of work and family life policies in different stages of the EU social policy development particularly after the introduction of European Employment Strategy which gave a tremendous importance to reconciliation of work and family life during their collaborations with other issues on the EU agenda as well as the major rationale behind their development and implementation and locates them in terms of two inter-related parameters mentioned above.

Keywords: European Union, division of unpaid work, gender equality, rhetoric of free choice

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Authors: Luyin Liang

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Although sibling relationship has been viewed as one of the most important family relationships that significantly impacted on the quality of life of both adults with Intellectual Disability (AWID) and their brothers/sisters, very few research have been done to investigate this relationship in China. This study investigated Chinese siblings of AWID’s relational motivations in sibling relationship and their determining factors. Quantitative research method has been adopted and 284 samples were recruited in this study. Siblings of AWID’s two types of relational motivations, including obligatory motivations and discretionary motivations were examined. Their emotional closeness, senses of responsibility, experiences of ID stigma, and expectancy of self-reward in sibling relationship were measured by validated scales. Personal, and familial-social demographic characteristics were also investigated. Linear correlation test and standard multiple regression analysis were the major statistical methods that have been used to analyze the data. The findings of this study showed that all the measured factors, including siblings of AWID’s emotional closeness, their senses of responsibility, experiences of ID stigma, and self-reward expectations had significant relationships with their both types of motivations. However, when these factors were grouped together to measure each type of these motivations, the prediction results were varied. The order of factors that best predict siblings of AWID’s obligatory motivations was: their senses of responsibility, emotional closeness, experiences of ID stigma, and their expectancy of self-reward, whereas the order of these factors that best determine siblings of AWID’s discretionary motivations was: their self-reward expectations, experiences of ID stigma, senses of responsibility, and emotional closeness. Among different demographic characteristics, AWID’s disability condition, their siblings’ age, gender, marital status, number of children, both siblings’ living arrangements and family financial status were found to have significant impacts on siblings of AWID’s both types of motivations in sibling relationship. The results of this study could enhance social work practitioners’ understandings about the needs and challenges of siblings of AWID. Suggestions on advocacies for policy changes and services improvements for these siblings were discussed in this study.

Keywords: sibling relationship, intellectual disability, adults, China

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Authors: Teresa B. King

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In the millennial age, with more students desiring a fashion major yet fewer having sewing and manufacturing knowledge, this increases demand on academicians to adequately educate. While fashion museums have a prominent place for historical preservation, the need for apparel education via working collections of handmade or mass manufactured apparel is lacking in most universities in the United States, especially in the Southern region. Created in 1988, Middle Tennessee State University’s historic clothing collection provides opportunities to study apparel construction methods throughout history, to compare and apply to today’s construction and manufacturing methods, as well as to learn the cyclical nature/importance of historic styles on current and upcoming fashion. In 2019, a class exercise experiment was implemented for which students researched their family genealogy using Ancestry.com, identified the oldest visual media (photographs, etc.) available, and analyzed the garment represented in said media. The student then located a comparable garment in the historic collection and evaluated the construction methods of the ancestor’s time period. A class 'fashion' genealogy tree was created and mounted for public viewing/education. Results of this exercise indicated that student learning increased due to the 'personal/familial connection' as it triggered more interest in historical garments as related to the student’s own personal culture. Students better identified garments regarding the historical time period, fiber content, fabric, and construction methods utilized, thus increasing learning and retention. Students also developed increased learning and recognition of custom construction methods versus current mass manufacturing techniques, which impact today’s fashion industry. A longitudinal effort will continue with the growth of the historic collection and as students continue to utilize the historic clothing collection.

Keywords: ancestry, clothing history, fashion history, genealogy, historic fashion museum collection

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Authors: Swarkar Sharma, Ekta Rai, Ankit Mahajan, Parvinder Kumar, Manoj K Dhar, Sushil Razdan, Kumarasamy Thangaraj, Carol Wise, Shiro Ikegawa M.D., K.K. Pandita M.D.

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Rare disorders are poorly understood hence, remain uncharacterized or patients are misdiagnosed and get poor medical attention. A rare mysterious skeletal disorder that remained unidentified for decades and rendered many people physically challenged and disabled for life has been reported in an isolated remote village ‘Arai’ of Poonch district of Jammu and Kashmir. This village is located deep in mountains and the population residing in the region is highly consanguineous. In our survey of the region, 70 affected people were reported, showing similar phenotype, in the village with a population of approximately 5000 individuals. We were able to collect samples from two multi generational extended families from the village. Through Whole Exome sequencing (WES), we identified a rare variation NM_003880.3:c.156C>A NP_003871.1:p.Cys52Ter, which results in introduction of premature stop codon in WISP3 gene. We found this variation perfectly segregating with the disease in one of the family. However, this variation was absent in other family. Interestingly, a novel splice site mutation at position c.643+1G>A of WISP3 gene, perfectly segregating with the disease was observed in the second family. Thus, exploiting WES and putting different evidences together (familial histories and genetic data, clinical features, radiological and biochemical tests and findings), the disease has finally been diagnosed as a very rare recessive hereditary skeletal disease “Progressive Pseudorheumatoid Arthropathy of Childhood” (PPAC) also known as “Spondyloepiphyseal Dysplasia Tarda with Progressive Arthropathy” (SEDT-PA). This genetic characterization and identification of the disease causing mutations will aid in genetic counseling, critically required to curb this rare disorder and to prevent its appearance in future generations in the population. Further, understanding of the role of WISP3 gene the biological pathways should help in developing treatment for the disorder.

Keywords: whole exome sequencing, Next Generation Sequencing, rare disorders

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Authors: Jennifer Duffy, Liz Fleming

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Teacher shortage in special education is an American educational problem. Due to the implementation of The No Child Left Behind Act (2001) and The Individuals with Disabilities Education Improvement Act (2004), there has been an increase in the number of students requiring special education services. Consequently, there has been an influx to hire more special education teachers. However, the historic challenge of hiring certified special education teachers has been intensified with this the profession’s increasing demand of positions to fill. Efforts to improve recruitment and entry into the field must be informed by an understanding of the factors that initially inspire special education teachers to choose this career pathway. Hence, an understanding of reasons why teachers select special education as a profession is needed. The purpose of this study was to explore personal, academic, and professional motivations that lead to the selection of special education as a career choice. Using the grounded theory approach, this research investigation examined the factors that were most instrumental in influencing applicants to select special education as a career choice. Over one hundred de-identified graduate school applications to Bay Path University’s Graduate Special Education Programs from 2014- 2017 were qualitatively analyzed. Grounded coding was used to discover themes that emerged in applicants’ admissions essays explaining why he/she was pursuing a career in special education. The central themes that were most influential in applicants’ selection of special education as a career trajectory were (a) personal/familial connections to disability, (b) meaningful paraprofessional experiences working with disabled children, (c) aptitudes for teaching, and (d) finding personal rewards and professional fulfillment by advocating for vulnerable children. Implications from these findings include educating family members of children with disabilities about possible career tracks in special education, designing programs for paraprofessionals to become certified teachers, exposing prospective teacher candidates to the field of special education, and recruiting professionals from the human services field who seek to improve the quality of life and educational opportunities for children with special needs.

Keywords: career choice, professional pathways to teaching children with disabilities, special education, teacher recruitment

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Authors: Salima Taleb, Kafila Boulaba, Ahlem Yousfi, Nada Taleb, Difallah Basma

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Introduction: Obesity is recognized as a cardiovascular risk factor. It is associated with cardio-metabolic diseases. Its prevalence is increasing significantly in both rich and poor countries. However, there are obese people who have no metabolic disturbance. So we think obesity is not always a risk factor for an abnormal metabolic profile that increases the risk of cardiometabolic problems. However, there is no definition that allows us to identify the individual group Metabolically Healthy but Obese (MHO). Objective: The objective of this study is to evaluate the relationship between MHO and some factors associated with it. Methods: A longitudinal study is a prospective cohort study of 600 participants aged ≥18 years. Metabolic status was assessed by the following parameters: blood pressure, fasting glucose, total cholesterol, HDL cholesterol, LDL cholesterol, and triglycerides. Body Mass Index (BMI) was calculated as weight (in kg) divided by height (m2), BMI = Weight/(Height)². According to the BMI value, our population was divided into four groups: underweight subjects with BMI <18.5 kg/m2, normal weight subjects with BMI = 18.5–24.9 kg/m², overweight subjects with BMI=25–29.9 kg/m², and obese subjects who have (BMI ≥ 30 kg/m²). A value of P < 0.05 was considered significant. Statistical processing was done using the SPSS 25 software. Results: During this study, 194 (32.33%) were identified as MHO among 416 (37%) obese individuals. The prevalence of the metabolically unhealthy phenotype among normal-weight individuals was (13.83%) vs. (37%) in obese individuals. Compared with metabolically healthy normal-weight individuals (10.93%), the prevalence of diabetes was (30.60%) in MHO, (20.59%) in metabolically unhealthy normal weight, and (52.29%) for metabolically unhealthy obese (p = 0.032). Blood pressure was significantly higher in MHO individuals than in metabolically healthy normal-weight individuals and in metabolically unhealthy obese than in metabolically unhealthy normal weight (P < 0.0001). Familial coronary artery disease does not appear to have an effect on the metabolic status of obese and normal-weight patients (P = 0.544). However, waist circumference appears to have an effect on the metabolic status of individuals (P < 0.0001). Conclusion: This study showed a high prevalence of metabolic profile disruption in normal-weight subjects and a high rate of overweight and/or obese people who are metabolically healthy. To understand the physiological mechanism related to these metabolic statuses, a thorough study is needed.

Keywords: metabolically health, obesity, factors associated, cardiovascular diseases

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Authors: Alexis Winfield, Carly Sugar, Barbara Fenesi

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The COVID-19 pandemic uprooted regular routines forcing many children to learn from home, requiring many adults to work from home, and cutting families off from support outside the home. Public health restrictions associated with the pandemic caused widespread psychological distress, including depression and anxiety, increased fear, panic, and stress. These trends are particularly concerning for families raising neuroatypical children, such as those with Attention-Deficit Hyperactivity Disorder (ADHD), as these children are already more likely than their typically developing peers to experience comorbid mental health issues and to experience greater distress when required to stay indoors. Families with children who have ADHD are also at greater risk for experiencing heightened familial stress due to the challenges associated with managing ADHD behavioural symptoms, greater parental discord and divorce, and greater financial difficulties compared to other families. The current study engaged families comprised of at least one child diagnosed with ADHD to elucidate 1) the unique ways that the COVID-19 pandemic affected their mental health and 2) the specific barriers these families faced to maintaining optimal mental wellbeing. A total of 33 participants (15 parent-child dyads) engaged in virtual interviews. Content analysis revealed that the most frequently identified mental health effects for families were increased child anxiety and disconnectedness, as well as deteriorating parental mental health. The most frequently identified barriers to maintaining optimal mental well-being were lack of routine, lack of social interaction and social support, and uncertainty and fear. Findings underscore areas of need during times of large-scale social isolation, bring voice to the families of children with ADHD, and contribute to our understanding of the pandemic’s impact on the wellbeing of vulnerable families. This work contributes to a growing body of research aimed at creating safeguards to support mental wellbeing for vulnerable families during times of crisis.

Keywords: attention-deficit hyperactivity disorder, COVID-19, mental health, vulnerable families

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Authors: Charisse H. Tay

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Background: Schizophrenia is a severe chronic mental disorder that can result in hallucinations, delusions, reduced social engagement, and lack of motivation. While antipsychotic medications often provide the basis for treatment, psychosocial strategies complement the benefit of medications and can result in meaningful improvements in symptoms and functioning. The aim of the study was to investigate psychosocial strategies used by internet self-help forum participants to effectively manage symptoms caused by schizophrenia. Internet self-help forums are a resource for medical and psychological problems and are commonly used to share information about experiences with symptom management. Method: Three international self-help internet forums on schizophrenia were identified using a search engine. 1,181 threads regarding non-pharmacological, psychosocial self-management of schizophrenia symptoms underwent screening, resulting in the final identification and coding of 91 threads and 191 posts from 134 unique forum users that contained details on psychosocial strategies endorsed personally by users that allowed them to effectively manage symptoms of schizophrenia, including positive symptoms (e.g., auditory/visual/tactile hallucinations, delusions, paranoia), negative symptoms (e.g.., avolition, apathy, anhedonia), symptoms of distress, and cognitive symptoms (e.g., memory loss). Results: Effective symptom management strategies personally endorsed by online forum users were psychological skills (e.g., re-focusing, mindfulness/meditation, reality checking; n = 94), engaging in activities (e.g., exercise, working/volunteering, hobbies; n = 84), social/familial support (n = 48), psychotherapy (n = 33), diet (n = 18), and religion/spirituality (n = 14). 44.4% of users reported using more than one strategy to manage their symptoms. The most common symptoms targeted and effectively managed, as specified by users, were positive symptoms (n = 113), negative symptoms (n = 17), distress (n = 8), and memory loss (n = 6). 10.5% of users reported more than one symptom effectively targeted. 70.2% of users with positive symptoms reported that psychological skills were effective for symptom relief. 88% of users with negative symptoms and 75% with distress symptoms reported that engaging in activities was effective. Discussion: Individuals with schizophrenia rely on a variety of different psychosocial methods to manage their symptoms. Different symptomology appears to be more effectively targeted by different types of psychosocial strategies. This may help to inform treatment strategy and tailored for individuals with schizophrenia.

Keywords: psychosocial treatment, qualitative methods, schizophrenia, symptom management

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Authors: Stephanie Duval

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The concept of educational success, combined with the overall development of the child in kindergarten, is at the center of current interests, both in research and in the environments responsible for the education of young children. In order to promote it, researchers emphasize the importance of studying the executive functions [EF] of children in preschool education. More precisely, the EFs, which refers to working memory [WM], inhibition, mental flexibility and planning, would be the pivotal element of the child’s educational success. In order to support the EFs of the child, and even his educational success, the quality of the environments is beginning to be explored more and more. The question that arises now is how to promote EFs for young children in the educational environment, in order to support their educational success? The objective of this study is to investigate the link between the quality of interactions in 5-year-old kindergarten and child’s EFs. The sample consists of 118 children (70 girls, 48 boys) in 12 classes. The quality of the interactions is observed from the Classroom Assessment Scoring System [CLASS], and the EFs (i.e., working memory, inhibition, cognitive flexibility, and planning) are measured with administered tests. The hypothesis of this study was that the quality of teacher-child interactions in preschool education, as measured by the CLASS, was associated with the child’s EFs. The results revealed that the quality of emotional support offered by adults in kindergarten, included in the CLASS tool, was positively and significantly related to WM and inhibition skills. The results also suggest that WM is a key skill in the development of EFs, which may be associated with the educational success of the child. However, this hypothesis remains to be clarified, as is the link with educational success. In addition, results showed that factors associated to the family (ex. parents’ income) moderate the relationship between the domain ‘instructional support’ of the CLASS (ex. concept development) and child’s WM skills. These data suggest a moderating effect related to family characteristics in the link between ‘quality of classroom interactions’ and ‘EFs’. This project proposes, as a future avenue, to check the distinctive effect of different environments (familial and educational) on the child’s EFs. More specifically, future study could examine the influence of the educational environment on EF skills, as well as whether or not there is a moderating effect of the family environment (ex. parents' income) on the link between the quality of the interactions in the classroom and the EFs of the children, as anticipated by this research.

Keywords: executive functions [EFs], environmental factors, quality of interactions, preschool education

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Authors: Fatimah Abd Elghani, Raymonde Szargel, Vered Shani, Hazem Safory, Haya Hamza, Mor Savyon, Ruth Rott, Rina Bandopadhyay, Simone Engelender

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Background: PINK1 is a mitochondrial kinase mutated in some familial cases of Parkinson’s disease. Down regulation of PINK1 results in abnormal mitochondrial morphology and altered membrane potential. Although PINK1 has a predicted mitochondrial import sequence, it’s cellular, and submitochondrial localization remains unclear, in part because it is rapidly degraded. In this work, we investigated the mechanisms involved in PINK1 degradation and how this may affect PINK1 stability and function, with implications for mitochondrial function in PD. In addition, pharmacological inhibition of proteasome activity was shown to lead to PINK1 accumulation, indicating that PINK1 degradation depends on the ubiquitin-proteasome system (UPS). Methods: Using co-immunoprecipitation assays, we identified E3 ubiquitin ligase SIAH1 as a PINK1-interacting protein in HEK293 cells as well as on rat brain tissues. In addition, we determined the effect of SIAH 1, SIAH2 and Parkin on PINK1 steady-state levels by Western blot analysis, and checked their possibility to ubiquitinate and mediate PINK1 degradation through the proteasome carried out in vivo ubiquitination experiments. Results: We have obtained results showing that SIAH-1 interacts with and ubiquitinates PINK1. The ubiquitination promoted by SIAH-1 leads to the proteasomal degradation of PINK1. We confirmed these findings by knocking down SIAH-1 and observing important accumulation of PINK1 in cells. Besides, we found that SIAH-1 decreases PINK1 steady-state levels but not the E3 ligase Parkin. We also investigated the interaction of SIAH-1 with PINK1 disease mutants and its ability to promote their ubiquitination and degradation. Although, no clear difference in the ability of SIAH-1 to promote the degradation of PINK1 disease mutants was observed. It is possible that dysfunction of proteasomal activity in the disease may lead to the accumulation and aggregation of ubiquitinated PINK1 in patients with PINK1 mutations, with possible implications to the pathogenesis of PD. Conclusions: Here, we demonstrated that SIAH-1 ubiquitinates and promotes the degradation of PINK1. In addition, SIAH-1 represents now a target that may help the improvement of mitophagy in PD. Further investigations needed to understand how mitophagy is regulated by PINK1-SIAH-1 axis to provide targets for future therapeutics.

Keywords: PD, Parkinson's disease, PINK1, PTEN-induced kinase1, SIAH, seven in absentia homolog, SN, substantia nigra

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Authors: Ruth Nalugya, Claire Nimusiima, Elizabeth Kawesa, Harriet Nambejja, Geert van Hove, Janet Seeley, Femke Bannink Mbazzi

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Background: ‘Obuntu bulamu’, an intervention for children, parents, and teachers to improve the participation and inclusion of children with disabilities (CwD) through peer-to-peer support, was developed and tested in central Uganda between 2017 and 2019. The intervention consisted of children, parents, and teachers' training sessions and peer to peer support activities directed at disability inclusion using an African disability framework. In this paper, we discuss parent participation in and parent evaluation of the ‘Obuntu bulamu’ intervention. Methods: This qualitative Afrocentric intervention study was implemented in 10 communities in the Wakiso district in Central Uganda. We purposely selected children aged 8 to 14 years with different impairments, their peers, and parents, with different levels of household income and familial support, who were enrolled in primary schools in the ten communities with on average three children with disabilities per community. Sixty four parents (33 parents of CwDs and 31 peers) participating in the ‘Obuntu bulamu’ study were interviewed at baseline and endline. Two focus group discussions were held with parents at the midline. Parents also participated in a consultative meeting about the intervention design at baseline, and two evaluation workshops held at midline and endline. Thematic data analysis of the interview and focus group data was conducted. Results: Findings showed parents found the group-based activities inspiring and said they built hope and confidence. Parents felt the intervention was acceptable, culturally appropriate, and supportive as it built on values and practices from their own traditions. Parents reported the intervention enhanced a sense of togetherness and belonging through the group meetings and follow-up activities. Parents also mentioned that the training helped them develop more positive attitudes towards CwD and disability inclusion. Parents felt that the invention increased a child’s participation and inclusion at home, school, and in communities. Conclusion: The Obuntu bulamu peer to peer support intervention is an acceptable, culturally appropriate intervention that has the potential to improve the inclusion of CwD. A larger randomized control trial is needed to evaluate the impact of the intervention model.

Keywords: inclusion, participation, inclusive education, peer support, belonging, Ubuntu, ‘Obuntu bulamu’

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Authors: Apoorva D. R.

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INTRODUCTION: Hemophagocytic lymphohistiocytosis (HLH) is a severe, potentially fatal syndrome in which there is excessive immune activation. The disease is seen in children and people of all ages, but infants from birth to 18 months are most frequently affected. HLH is a sporadic or familial condition that can be triggered by various events that disturb immunological homeostasis. In cases with a genetic predisposition and sporadic occurrences, infection is a frequent trigger. Because of the rarity of this disease, the diverse clinical presentation, and the lack of specificity in the clinical and laboratory results, prompt treatment is essential, but the biggest obstacle to a favorable outcome is frequently a delay in identification. CASE REPORT: Here we report a case of a 6-month-old male infant who presented to the dermatology outpatient with disseminated skin lesions present over the face, abdomen, scalp, and bilateral upper and lower limbs for the past month. The lesions were insidious in onset, initially started over the abdomen, and gradually progressed to involve other body parts. The patient also had a history of fever which was moderate in grade, on and off in nature for 1 month. There were no significant complaints in the past, family, or drug history. There was no history of feeding difficulties in the baby. Parents gave a history of developmental milestones appropriate for age. Examination findings include multiple well-defined monomorphic erythematous papules with a central crater present over bilateral cheeks. Few lichenoid shiny papules present over bilateral arms, legs, and abdomen. Ultrasound of the abdomen and pelvis showed mild degree hepatosplenomegaly, intraabdominal lymphadenopathy, and bilateral inguinal lymphadenopathy. Routine blood investigations showed anemia and lymphopenia. Multiple X-rays of the skull, chest, and bilateral upper and lower limbs were done and were normal. Histopathology features were suggestive of non-Langerhans cell cutaneous histiocytosis. CONCLUSION: HLH is a fatal and rare disease. A high level of suspicion and an interdisciplinary approach among experienced clinicians, pathologists, and microbiologists to define the diagnosis and causative disease are key to diagnosing this case. Early detection and treatment can reduce patient morbidity and mortality.

Keywords: histiocytosis, non langerhans cell, case report, fatal, rare

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Authors: Michelann Parr

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Family-school-community engagement enhances family-school-community well-being, collective confidence, and school climate. While it is often referred to as a positive thing in the literature for families, schools, and communities, it does not come without its struggles. While there are numerous things families, schools, and communities do each and every day to enhance engagement, it is often difficult to find our way to true belonging and engagement. Working our way surface level barriers is easy; we can provide childcare, transportation, resources, and refreshments. We can even change the environment so that families will feel welcome, valued, and respected. But there are often mindsets and perpsectives buried deep below the surface, most often grounded in societal, familial, and political norms, expectations, pressures, and narratives. This work requires ongoing energy, commitment, and engagement of all stakeholders, including families, schools, and communities. Each and every day, we need to take a reflective and introspective stance at what is said and done and how it supports the overall goal of family-school-community engagement. And whatever we must occur within a paradigm of care in additional to one of critical thinking and social justice. Families, and those working with families, must not simply accept all that is given, but should instead ask these types of questions: a) How, and by whom, are the current philosophies and practices of family-school engagement interrogated? b) How might digging below surface level meanings support understanding of what is being said and done? c) How can we move toward meaningful and authentic engagement that balances knowledge and power between family, school, district, community (local and global), and government? This type of work requires conscious attention and intentional decision-making at all levels bringing us one step closer to authentic and meaningful partnerships. Strategies useful to building a growth mindset include: a) interrogating and exploring consistencies and inconsistencies by looking at what is done and what is not done through multiple perspectives; b) recognizing that enhancing family-engagement and changing mindsets take place at the micro-level (e.g., family and school), but also require active engagement and awareness at the macro-level (e.g., community agencies, district school boards, government); c) taking action as an advocate or activist. Negative narratives about families, schools, and communities should not be maintained, but instead critical and courageous conversations in and out of school should be initiated and sustained; and d) maintaining consistency, simplicity, and steady progress. All involved in engagement need to be aware of the struggles, but keep them in check with the many successes. Change may not be observed on a day-to-day basis or even immediately, but stepping back and looking from the outside in, might change the view. Working toward a growth mindset will produce better results than a fixed mindset, and this takes time.

Keywords: family engagment, family-school-community engagement, parent engagement, parent involvment

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Authors: Al. Harshan, Hazamah Ali Mahdi

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The Big House literature embodies Irish history. It requires a special dimension of moral and social significance in relation to its owners. The Big House is a metaphor for the decline of the protestant Ascendancy that ruled in a catholic country and oppressed a native people. In the tradition of the Big House fiction, Maria Edgeworth's Castle Rackrent and the Absentee explore the effect of the Anglo-Irish protestant Ascendancy as it governed and misgoverned Ireland. Edgeworth illustrates the tradition of the Big House as a symbol of both a personal and historical theme. This paper provides a reading of Castle Rackrent and The Absentee from a post-colonial perspective. The paper maintains that Edgeworth's novel contain elements of a radical critique of the colonialist enterprise. In our postcolonial reading of Maria Edgeworth's novels, one that goes beyond considering works as those of Sir Walter Scoot, regional evidence has been found of Edgeworth's colonial ideology. The significance of Castle Rackrent lies mainly in the fact that is the first English novel to speak in the voice of the colonized Irish. What is more important is that the irony and the comic aspect of the novel comes from its Irish narrator (Thady Quirk) and its Irish setting Ireland. Edgeworth reveals the geographical 'other' to her English reader, by placing her colonized Irish narrator and his son, Jason Quirk, in a position of inferiority to emphasize the gap between Englishness and Irishness. Furthermore, this satirical aspect is a political one. It works to create and protect the superiority of the domestic English reader over the Irish subject. In other words, the implication of the colonial system of the novel and of its structure of dominance and subordination is overlooked by its comic dimension. The matrimonial plot in the Absentee functions as an imperial plot, constructing Ireland as a complementary but ever unequal partner in the family of Great Britain. This imperial marriage works hegemonically to produce the domestic stability considered so crucial to national and colonial stability. Moreover, in order to achieve her proper imperial plot, Edgeworth reconciliation of England and Ireland is seen in the marriage of the Anglo-Irish (hero/Colambre) with the Irish (heroine/Grace Nugent), and the happy bourgeois family; consequently, it becomes the model for colonizer-colonized relationships. Edgeworth must establish modes of legitimate behavior for women and men. The Absentee explains more purposely how familial reorganization is dependent on the restitution of masculine authority and advantage, particularly for Irish community.

Keywords: Maria Edgeworth, post-colonial, reading, Irish

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Authors: Farahnaz Amini, Woo Yun Kin, Lazwani Kolandaiveloo

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Availability of different genetic tests after completion of Human Genome Project increases the physicians’ responsibility to keep themselves update on the potential implementation of these genetic tests in their daily practice. However, due to numbers of barriers, still many of physicians are not either aware of these tests or are not willing to offer or refer their patients for genetic tests. This study was conducted an anonymous, cross-sectional, mailed-based survey to develop a primary data of Malaysian physicians’ level of knowledge and perception of gene profiling. Questionnaire had 29 questions. Total scores on selected questions were used to assess the level of knowledge. The highest possible score was 11. Descriptive statistics, one way ANOVA and chi-squared test was used for statistical analysis. Sixty three completed questionnaires was returned by 27 general practitioners (GPs) and 36 medical specialists. Responders’ age range from 24 to 55 years old (mean 30.2 ± 6.4). About 40% of the participants rated themselves as having poor level of knowledge in genetics in general whilst 60% believed that they have fair level of knowledge. However, almost half (46%) of the respondents felt that they were not knowledgeable about available genetic tests. A majority (94%) of the responders were not aware of any lab or company which is offering gene profiling services in Malaysia. Only 4% of participants were aware of using gene profiling for detection of dosage of some drugs. Respondents perceived greater utility of gene profiling for breast cancer (38%) compared to the colorectal familial cancer (3%). The score of knowledge ranged from 2 to 8 (mean 4.38 ± 1.67). Non-significant differences between score of knowledge of GPs and specialists were observed, with score of 4.19 and 4.58 respectively. There was no significant association between any demographic factors and level of knowledge. However, those who graduated between years 2001 to 2005 had higher level of knowledge. Overall, 83% of participants showed relatively high level of perception on value of gene profiling to detect patient’s risk of disease. However, low perception was observed for both statements of using gene profiling for general population in order to alter their lifestyle (25%) as well as having the full sequence of a patient genome for the purpose of determining a patient’s best match for treatment (18%). The lack of clinical guidelines, limited provider knowledge and awareness, lack of time and resources to educate patients, lack of evidence-based clinical information and cost of tests were the most barriers of ordering gene profiling mentioned by physicians. In conclusion Malaysian physicians who participate in this study had mediocre level of knowledge and awareness in gene profiling. The low exposure to the genetic questions and problems might be a key predictor of lack of awareness and knowledge on available genetic tests. Educational and training workshop might be useful in helping Malaysian physicians incorporate genetic profiling into practice for eligible patients.

Keywords: gene profiling, knowledge, Malaysia, physician

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Authors: Faris Alkhalil, Rana Bitar, Amer Azaz, Hisham Natour, Noora Almeraikhi, Mohamad Miqdady

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Background: Children with liver transplantation are achieving very good survival and so there is now a need to concentrate on achieving good health in these patients and preventing disease. Immunosuppressive medications have side effects that need to be monitored and if possible avoided. Glucocorticoids and calcineurin inhibitors are detrimental to bone and mineral homeostasis in addition steroids can also affect linear growth. Steroid sparing regimes in renal transplant children has shown to improve children’s height. Aim: We aim to review the growth and bone health of children post liver transplant by measuring bone mineral density (BMD) using dual energy X-ray absorptiometry (DEXA) scan and assessing if there is a clear link between poor growth and impaired bone health and use of long term steroids. Subjects and Methods: This is a single centre retrospective Cohort study, we reviewed the medical notes of children (0-16 years) who underwent a liver transplantation between November 2000 to November 2016 and currently being followed at our centre. Results: 39 patients were identified (25 males and 14 females), the median transplant age was 2 years (range 9 months - 16 years), and the median follow up was 6 years. Four patients received a combined transplant, 2 kidney and liver transplant and 2 received a liver and small bowel transplant. The indications for transplant included, Biliary Atresia (31%), Acute Liver failure (18%), Progressive Familial Intrahepatic Cholestasis (15%), transplantable metabolic disease (10%), TPN related liver disease (8%), Primary Hyperoxaluria (5%), Hepatocellular carcinoma (3%) and other causes (10%). 36 patients (95%) were on a calcineurin inhibitor (34 patients were on Tacrolimus and 2 on Cyclosporin). The other three patients were on Sirolimus. Low dose long-term steroids was used in 21% of the patients. A considerable proportion of the patients had poor growth. 15% were below the 3rd centile for weight for age and 21% were below the 3rd centile for height for age. Most of our patients with poor growth were not on long term steroids. 49% of patients had a DEXA scan post transplantation. 21% of these children had low bone mineral density, one patient had met osteoporosis criteria with a vertebral fracture. Most of our patients with impaired bone health were not on long term steroids. 20% of the patients who did not undergo a DEXA scan developed long bone fractures and 50% of them were on long term steroid use which may suggest impaired bone health in these patients. Summary and Conclusion: The incidence of impaired bone health, although studied in limited number of patients; was high. Early recognition and treatment should be instituted to avoid fractures and improve bone health. Many of the patients were below the 3rd centile for weight and height however there was no clear relationship between steroid use and impaired bone health, reduced weight and reduced linear height.

Keywords: bone, growth, pediatric, liver, transplantation

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Authors: Tal Braverman Uriel, Tal Litvak Hirsch

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Background and Objectives: Little or only partial emphasis has been placed on exploring the complexity of consensual non-monogamous relationships. The term "polyamory" refers to consensual non-monogamy, and it is defined as having emotional and/or sexual relations simultaneously with two or more people, the consent and knowledge of all the partners concerned. Managing multiple romantic relationships with different people evokes more emotions, leads to more emotional conflicts arising from different interests, and demands practical strategies. An individual's transition from a monogamous lifestyle to a consensual non-monogamous lifestyle yields new challenges, accompanied by stress, uncertainty, and question marks, as do other life-changing events, such as divorce or transition to parenthood. The study examines both the process of transition and adaptation to a consensually non-monogamous relationship, as well as the coping mechanism involved in the daily conduct of this lifestyle. The research focuses on understanding the consequences, challenges, and coping methods from a personal, marital, and familial point of view and focuses on 40 middle-aged individuals (20 men and 20 women ages 40-60). The research sheds light on a way of life that has not been previously studied in Israel and is still considered unacceptable. Theories of crisis (e.g., as Folkman and Lazarus) were applied, and as a result, a deeper understanding of the subject was reached, all while focusing on multiple aspects of dealing with stress. The basic research question examines the consequences of entering a polyamorous life from a personal point of view as an individual, partner, and parent and the ways of coping with these consequences. Method: The research is conducted with a narrative qualitative approach in the interpretive paradigm, including semi-structured in-depth interviews. The method of analysis is thematic. Results: The findings indicate that in most cases, an individual's motivation to open the relationship is mainly a longing for better sexuality and for an added layer of excitement to their lives. Most of the interviewees were assisted by their spouses in the process, as well as by social networks and podcasts on the subject. Some of them therapeutic professionals from the field are helpful. It also clearly emerged that among those who experienced acute emotional crises with the primary partner or painful separations from secondary partners, all believed polyamory to be the adequate way of life for them. Finally, a key resource for managing tension and stress is the ability to share and communicate with the primary partner. Conclusions: The study points to the challenges and benefits of a non-monogamous lifestyle as well as the use of coping mechanisms and resources that are consistent with the existing theory and research in the field in the context of life changes. The study indicates the need to expand the research canvas in the future in the context of parenting and the consequences for children.

Keywords: a-monogamy, consent, family, stress, tension

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Authors: Vidya Yadav

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In every society, males and females are expected to behave in certain ways, and in every culture, those expectation, values and norms are different and vary accordingly. Many of the inequalities between men and women are rooted in institutional structure such as in educational field, labour market, wages, decision-making power, access to services as well as in accessing the health and well-being care also. The marriage and kinship pattern shape both men’s and women’s lives. Earlier many studies have highlighted the gender disparities which vary tremendously between regions, social classes, and communities. This study will try to explore the prominent indicators to show the status of women and well-being condition in Indian society. Primarily this paper concern with firstly identification of indicators related to gender in each area like education, work status, mobility, women participation in public and private decision making, autonomy and domestic violence etc. And once the indicators are identified next task is to define them. The indicators which are selected here are for a comparison of women’s status across Indian states. Recent Indian Human Development Survey, 2011-12 has been procured to show the current situation of women. Result shows that in spite of rising levels of education and images of growing westernization in India, love marriages remain in rarity even among urban elite. In India marriage is universal, and most of the men and women marry at relatively young age. Even though the legal age of marriage is 18, but more than 60 percent are married before the legal age. Not surprisingly, but Bihar and Rajasthan are the states with earliest age at marriage. Most of them reported that they have very limited contact with their husband before marriages. Around 69 percent of women met their husbands on the day of the wedding or shortly before. In spite of decline in fertility, still childbearing remains essential to women’s lives. Mostly women aged 25 and older had at least one child. Women’s control over household resources, physical space and mobility is also limited. Indian women’s, mostly rely on men to purchase day to day necessities, as well as medicines, as well as other necessary items. This ultimately reduces the likelihood that women have cash in hand for such purchases. The story is quite different when it comes to have control over decision over purchasing household assets such as TVs or refrigerator, names on the bank account, and home ownership papers. However, the likelihood of ownership rises among urbanite educated women’s. Women’s still have to the cultural norms and the practice of purdah or ghunghat, familial control over women’s physical movement. Wife beating and domestic violence still remain pervasive, and beaten for minor transgression like going out without permission. Development of India cannot be realized without the very significant component of gender. Therefore detailed examinations of different indicators are required to understand, strategize, plan and formulate programmes.

Keywords: autonomy, empowerment, gender, violence

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Authors: Tak Mau Simon Chan, Ying Chuen Lance Chan

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Homelessness has been a popular and controversial debate in Hong Kong, a city which is densely populated and well-known for very expensive housing. The constitution of the homeless as threats to the community and environmental hygiene is ambiguous and debatable in the Hong Kong context. The lack of an intervention model is the critical research gap thus far, aside from the tangible services delivered. The life story approach (LSA), with its unique humanistic orientation, has been well applied in recent decades to depict the needs of various target groups, but not the homeless. It is argued that the life story approach (LSA), which has been employed by health professionals in the landscape of dementia, and health and social care settings, can be used as a reference in the local Chinese context through indigenization. This study, therefore, captures the viewpoints of service providers and users by constructing an indigenous intervention model that refers to the LSA in serving the chronically homeless. By informing 13 social workers and 27 homeless individuals in 8 focus groups whilst 12 homeless individuals have participated in individual in-depth interviews, a framework of LSA in homeless people is proposed. Through thematic analysis, three main themes of their life stories was generated, namely, the family, negative experiences and identity transformation. The three domains solidified framework that not only can be applied to the homeless, but also other disadvantaged groups in the Chinese context. Based on the three domains of family, negative experiences and identity transformation, the model is applied in the daily practices of social workers who help the homeless. The domain of family encompasses familial relationships from the past to the present to the speculated future with ten sub-themes. The domain of negative experiences includes seven sub-themes, with reference to the deviant behavior committed. The last domain, identity transformation, incorporates the awareness and redefining of one’s identity and there are a total of seven sub-themes. The first two domains are important components of personal histories while the third is more of an unknown, exploratory and yet to-be-redefined territory which has a more positive and constructive orientation towards developing one’s identity and life meaning. The longitudinal temporal dimension of moving from the past – present - future enriches the meaning making process, facilitates the integration of life experiences and maintains a more hopeful dialogue. The model is tested and its effectiveness is measured by using qualitative and quantitative methods to affirm the extent that it is relevant to the local context. First, it contributes to providing a clear guideline for social workers who can use the approach as a reference source. Secondly, the framework acts as a new intervention means to address problem saturated stories and the intangible needs of the homeless. Thirdly, the model extends the application to beyond health related issues. Last but not least, the model is highly relevant to the local indigenous context.

Keywords: homeless, indigenous intervention, life story approach, social work practice

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Authors: Steven J. Singer, Julianna F. Kamenakis, Allison R. Shapiro, Kimberly M. Cacciato

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Communication and language are topics frequently studied among deaf children. However, there is limited research that focuses specifically on the communication and language experiences of Deaf-Disabled children. In this ethnography, researchers investigated the language experiences of six sets of parents with Deaf-Disabled children who chose American Sign Language (ASL) as the preferred mode of communication for their child. Specifically, the researchers were interested in the factors that influenced the parents’ decisions regarding their child’s communication options, educational placements, and social experiences. Data collection in this research included 18 hours of semi-structured interviews, 20 hours of participant observations, over 150 pages of reflexive journals and field notes, and a 2-hour focus group. The team conducted constant comparison qualitative analysis using NVivo software and an inductive coding procedure. The four researchers each read the data several times until they were able to chunk it into broad categories about communication and social influences. The team compared the various categories they developed, selecting ones that were consistent among researchers and redefining categories that differed. Continuing to use open inductive coding, the research team refined the categories until they were able to develop distinct themes. Two team members developed each theme through a process of independent coding, comparison, discussion, and resolution. The research team developed three themes: 1) early medical needs provided time for the parents to explore various communication options for their Deaf-Disabled child, 2) without intervention from medical professionals or educators, ASL emerged as a prioritized mode of communication for the family, 3) atypical gender roles affected familial communication dynamics. While managing the significant health issues of their Deaf-Disabled child at birth, families and medical professionals were so fixated on tending to the medical needs of the child that the typical pressures of determining a mode of communication were deprioritized. This allowed the families to meticulously research various methods of communication, resulting in an informed, rational, and well-considered decision to use ASL as the primary mode of communication with their Deaf-Disabled child. It was evident that having a Deaf-Disabled child meant an increased amount of labor and responsibilities for parents. This led to a shift in the roles of the family members. During the child’s development, the mother transformed from fulfilling the stereotypical roles of nurturer and administrator to that of administrator and champion. The mother facilitated medical proceedings and educational arrangements while the father became the caretaker and nurturer of their Deaf-Disabled child in addition to the traditional role of earning the family’s primary income. Ultimately, this research led to a deeper understanding of the critical role that time plays in parents’ decision-making process regarding communication methods with their Deaf-Disabled child.

Keywords: American Sign Language, deaf-disabled, ethnography, sociolinguistics

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Authors: Reham Khalaf-Nazzal, Imad Dweikat, Paula Gimenez, Iker Oyenarte, Alfonso Martinez-Cruz, Domonik Muller

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Metal cation transport mediator (CNNM) gene family comprises 4 isoforms that are expressed in various human tissues. Structurally, CNNMs are complex proteins that contain an extracellular N-terminal domain preceding a DUF21 transmembrane domain, a ‘Bateman module’ and a C-terminal cNMP-binding domain. Mutations in CNNM2 cause familial dominant hypomagnesaemia. Growing evidence highlights the role of CNNM2 in neurodevelopment. Mutations in CNNM2 have been implicated in epilepsy, intellectual disability, schizophrenia, and others. In the present study, we aim to elucidate the function of CNNM2 in the developing brain. Thus, we present the genetic origin of symptoms in two family cohorts. In the first family, three siblings of a consanguineous Palestinian family in which parents are first cousins, and consanguinity ran over several generations, presented a varying degree of intellectual disability, cone-rod dystrophy, and autism spectrum disorder. Exome sequencing and segregation analysis revealed the presence of homozygous pathogenic mutation in the CNNM2 gene, the parents were heterozygous for that gene mutation. Magnesium blood levels were normal in the three children and their parents in several measurements. They had no symptoms of hypomagnesemia. The CNNM2 mutation in this family was found to locate in the CBS1 domain of the CNNM2 protein. The crystal structure of the mutated CNNM2 protein was not significantly different from the wild-type protein, and the binding of AMP or MgATP was not dramatically affected. This suggests that the CBS1 domain could be involved in pure neurodevelopmental functions independent of its magnesium-handling role, and this mutation could have affected a protein partner binding or other functions in this protein. In the second family, another autosomal dominant CNNM2 mutation was found to run in a large family with multiple individuals over three generations. All affected family members had hypomagnesemia and hypermagnesuria. Oral supplementation of magnesium did not increase the levels of magnesium in serum significantly. Some affected members of this family have defects in fine motor skills such as dyslexia and dyslalia. The detected mutation is located in the N-terminal part, which contains a signal peptide thought to be involved in the sorting and routing of the protein. In this project, we describe heterogenous clinical phenotypes related to CNNM2 mutations and protein functions. In the first family, and up to the authors’ knowledge, we report for the first time the involvement of CNNM2 in retinal photoreceptor development and function. In addition, we report the presence of a neurophenotype independent of magnesium status related to the CNNM2 protein mutation. Taking into account the different modes of inheritance and the different positions of the mutations within CNNM2 and its different structural and functional domains, it is likely that CNNM2 might be involved in a wide spectrum of neuropsychiatric comorbidities with considerable varying phenotypes.

Keywords: magnesium transport, autosomal recessive, autism, neurodevelopment, CBS domain

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