Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 46

Search results for: siblings

46 Intertwined Lives: Narratives of Children with Disabilities and Their Siblings

Authors: Shyamani Hettiarachchi

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The experiences of children with disabilities and their siblings are seldom documented in Sri Lanka. The aim of this study was to uncover the narratives of young children with disabilities and their siblings in Sri Lanka. Fifteen children with disabilities and fifteen siblings were included in this study. Opportunities were offered to the participants to engage in artwork and story making activities. Narratives on the artwork and stories were gathered and the data analyzed using the key principles of Framework Analysis to determine the key themes. The key themes to emerge were of love, protectiveness, insecurity and visibility. The results highlight the need to take account of the experiences of children with disabilities and their siblings to understand how they understand and cope with disability.

Keywords: art, children with disabilities, narratives, siblings, storymaking

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45 Of Love and Isolation: Narratives of Siblings of Children with Cerebral Palsy in Sri Lanka

Authors: Shyamani Hettiarachchi

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Aim: Siblings of children with cerebral palsy are often in the periphery of discussions; their views not always taken into account. The aim of this study was to uncover the narratives of young siblings of children with cerebral palsy in Sri Lanka. Methods: Semi-structured interviews and artwork were gathered from 10 children who have siblings diagnosed with cerebral palsy. The data was analyzed using the key principles of Framework Analysis to determine the key themes within the narratives. Results: The key themes to emerge were complex and nuanced. These included themes of love and feeling of protectiveness; jealousy and uncertainly; guilt and hope. Conclusions: The results highlight the need to take document the views of siblings who are often on the margins of the family and of family decisions and discussions. It also supports the need to offer safe spaces and opportunities for siblings of children with disabilities to express their feelings and to receive support where required.

Keywords: disability, grandmothers, mothers, narratives, women

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44 Effect of the Birth Order and Arrival of Younger Siblings on the Development of a Child: Evidence from India

Authors: Swati Srivastava, Ashish Kumar Upadhyay

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Using longitudinal data from three waves of Young Lives Study and Ordinary Least Square methods, study has investigated the effect of birth order and arrival of younger siblings on child development in India. Study used child’s height for age z-score, weight for age z-score, BMI for age z-score, Peabody Picture Vocabulary Test (PPVT-Score)c, maths score, Early Grade Reading Assessment Test (ERGA) score, and memory score to measure the physical and cognitive development of child during wave-3. Findings suggest that having a high birth order is detrimental for child development and the gap between adjacent siblings is larger for children late in the birth sequences than early in the birth sequences. Study also reported that not only older siblings but arrival of younger siblings before assessment of test also reduces the development of a child. The effects become stronger in case of female children than male children.

Keywords: height for age z-score, weight for age z-score, BMI for z-score, PPVT score, math score, EGRA score, memory score, birth order, siblings, Young Lives Study, India

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43 Siblings of People with Intellectual and Developmental Disabilities: Influence of Culture on Their Identity and Quality of Life

Authors: Olga Muries-Cantan, Alice Schippers, Climent Gine, Noelle van den Heuvel

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A systematic review of the literature about the quality of life perceptions of siblings of people with intellectual and developmental disabilities (ID/DD) has shown differences and similarities among siblings’ perceptions around the world. Some of these differences might be explained by the influence of cultural and religious backgrounds on siblings’ quality of life through values, beliefs, and perceptions of ‘normalcy’ and stigma. The main goal of the multiple case study that we present, is to explore the quality of life perceptions of two adolescent siblings of individuals with ID/DD in order to identify the role cultural influence has played in their perceptions of quality of life. Two siblings from different European regions will participate in the study: one from a Southern European country (Spain) and the other one from a Western European country (The Netherlands). Taking a cross-cultural perspective, concepts such as values, cultural beliefs regarding disability, expectations, identity, supports, desires, and sibling relationships, will be discussed in a semi-structured interview with each sibling. Data will be analysed following an interpretative phenomenological analysis (IPA). It is expected that findings will show the particularities of the experience of having a brother or a sister with ID/DD and the singular influence of the culture on siblings’ perceptions of quality of life. The results of this study will help to spread awareness around the necessity that researchers, practitioners, and policymakers take into account the cultural background of the individuals in order to provide them with better services and support. In this line, more culturally situated research is required to enlarge the knowledge in this field.

Keywords: culture, intellectual disability, quality of life, siblings

Procedia PDF Downloads 44
42 Bilingual Siblings and Dynamic Family Language Policies in Italian/English Families

Authors: Daniela Panico

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Framed by language socialization and family language policy theories, the present study explores the ways the language choice patterns of bilingual siblings contribute to the shaping of the language environment and the language practices of Italian/English families residing in Sydney. The main source of data is video recordings of naturally occurring parent-children and child-to-child interactions during everyday routines (i.e., family mealtimes and siblings playtime) in the home environment. Recurrent interactional practices are analyzed in detail through a conversational analytical approach. This presentation focuses on the interactional trajectories developing during the negotiation of language choices between all family members and between siblings in face-to-face interactions. Fine-grained analysis is performed on language negotiation sequences of multiparty bilingual conversations in order to uncover the sequential patterns through which a) the children respond to the parental strategies aiming to minority language maintenance, and b) the siblings influence each other’s language use and choice (e.g., older siblings positioning themselves as language teachers and language brokers, younger siblings accepting the role of apprentices). The findings show that, along with the parents, children are active socializing agents in the family and, with their linguistic behavior, they contribute to the establishment of a bilingual or a monolingual context in the home. Moreover, by orienting themselves towards the use of one or the other language in family talk, bilingual siblings are a major internal micro force in the language ecology of a bilingual family and can strongly support language maintenance or language shift processes in such domain. Overall, the study provides insights into the dynamic ways in which family language policy is interactionally negotiated and instantiated in bilingual homes as well as the challenges of intergenerational language transmission.

Keywords: bilingual siblings, family interactions, family language policy, language maintenance

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41 The Sexual Knowledge, Attitudes and Behaviors of College Students from Only-Child Families: A National Survey in China

Authors: Jiashu Shen

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This study aims at exploring the characteristics of sexual knowledge, attitudes, and behaviors of Chinese college students from the 'one-child' families compared with those with siblings. This study utilized the data from the 'National College Student Survey on Sexual and Reproductive Health 2019'. Multiple logistic regression analyses were used to assess the association between the 'only-child' and their sexual knowledge, sexual attitudes, sexual behaviors, and risky sexual behaviors (RSB) stratified by sex and home regions, respectively. Compared with students with siblings, the 'only-child' students scored higher in sex-related knowledge (only-child students: 4.49 ± 2.28, students with siblings: 3.60 ± 2.27). Stronger associations between only-child and more liberal sexual attitudes were found in urban areas, including the approval of premarital sexual intercourse (OR: 1.51, 95% CI: 1.50-1.65) and multiple sexual partners (OR: 1.85, 95% CI: 1.72-1.99). For risky sexual behaviors, being only-child is more likely to use condoms in first sexual intercourse, especially among male students (OR: 0.68, 95% CI: 0.58-0.80). Only-child students are more likely to have more sexual knowledge, more liberal sexual attitude, and less risky sexual behavior. Further health policy and sex education should focus more on students with siblings.

Keywords: attitudes and behaviors, only-child students, sexual knowledge, students with siblings

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40 Experiences and Coping of Adults with Death of Siblings during Childhood in Chinese Context: Implications for Therapeutic Interventions

Authors: Sze Yee Lee

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The death of a sibling in childhood leads to significant impacts on both the personal and family development of the surviving siblings. Yet, the effects of sibling loss in Chinese societies such as Hong Kong have been inadequately documented in the literature. In particular, there is a gap in the literature about the long term impacts on surviving siblings. This paper explores the experience of adult siblings encountering siblings’ death during childhood with the use of in-depth interviews. Through thematic analysis and in-depth interviews, the author explores the impacts on surviving siblings’ emotions, coping styles, struggles and challenges, and personal development. Furthermore, the influences on family dynamics are explored thoroughly, including the changes in a family atmosphere, family roles, family relationships, family communication, and parenting styles. More importantly, the author identifies (i) existing continuing bonds, (ii) crying, (iii) adequate social support, (iv) hiding own emotions as a gesture of protecting parents as the crucial elements pertinent to surviving siblings’ successful adaptation in the face of sibling loss. In addition, 'child-centered' and 'family-centered' interventions for families with siblings' death in a Chinese context are discussed. With the use of age-appropriate language and children’s participation in the preparation of death and after-death arrangements, surviving siblings could be assisted in transforming bereavement into opportunities for growth. In addition, the bereaved family could better cope with grief with open communication platforms, adequate social support, and family education resources. Meanwhile, life-and-death education at both school and community levels could enhance the public’s awareness and understanding of the bereaved individuals to prevent creating further harm to them.

Keywords: children and adolescent bereavement, children-centered, family-centered, sibling’s death

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39 Sibling Relationship of Adults with Intellectual Disability in China

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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38 A Difficult Advertising: A Preventive Intervention for Siblings of Children with down Syndrome

Authors: Valentina Manna, Oscar Pisanti

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The term sibling has been adopted by Italian brothers and sisters of people with disabilities, to define themselves as a group with shared features. This choice is due to the importance of underlying the centrality of what being a brother/sister means to these people because of and beyond the disability. Being a sibling offers great opportunities to develop empathy and relational skills but it may also amplify the typical dynamics of fraternal relationships dealing with envy, rivalry and concern. This outlines a condition of potential developmental risk for the non-disabled sibling, being at the same time a great resource for the child with special needs, as actor of an intimate relationship usually lasting after that one with parents. However, young siblings are often unheeded in their needs for comprehension of disability and not considered as persons requiring attention themselves. Moreover, scholars have scarcely undertaken an exploration of siblings’ perspective as competent contributors for producing knowledge useful to the benefit of families with special needs children. This contribution describes a preventive intervention for young siblings (6 – 16 years) of children with Down syndrome, by means of a psychodynamic-oriented group where participants could communicate, explore and share their emotional experiences as siblings. Based on a participatory approach, the program represents an action-research project, involving siblings as key experts for our understanding of siblings’ lives. The initiative used social media and video technologies to rise children’s voice: as a final product, participants were involved in the realization of a video campaign –which they defined ‘a difficult advertising’– built on the insights generated by the program and addressed to other siblings to help them facing and recognizing resources and difficulties related to their status. The final video campaign realized by the participants summarizes the main themes emerged during the intervention; as revealed by a thematic analysis, they are related to the difficulty in feeling to have a personal identity, to face disability as a form of ‘untought known’ and to integrate ambivalent emotions. In conclusion, the group device revealed its efficacy as a preventive tool: it allowed participants to deeply reflect on their own experiences and to communicate them for the first time in a verbal and mentalized form.

Keywords: down syndrome, group, siblings, prevention

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37 Being Second Parents: A Qualitative Research on Perceptions, Emotions, and Experiences of Adolescents towards Their Siblings with Autism Spectrum Disorder

Authors: Christi Conde, Claudia Macias, Bianca Sornillo

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The effects of having a child with Autism Spectrum Disorder (ASD) extends to the family specifically, to the typically developing siblings. Provided that Filipino values involve close family-ties and family-centeredness, this study is interested in exploring the experiences of Filipino adolescents as a sibling of those diagnosed with ASD. A total of eleven (11) Filipino individuals, 3 males and 8 females, ages 11-24 years old, participated in the study – 6 of them were interviewed while the rest partook in a ginabayang talakayan (a variation of a focus group discussion). The data were analyzed using thematic analysis. Results showed 5 major themes: (1) the individual has mixed emotions and perceptions towards sibling, (2) the individual experiences differential treatment from parents, (3) the individual has responsibilities towards sibling, (4) the individual experiences personal growth, and (5) the individual is adjusting to the unfavorable effects of having sibling with ASD. Another emerging theme is an interplay between acceptance of one’s sibling, and one’s emotions and perceptions. It was also observed that there were more positive changes than negative within the individual. Having a lifetime responsibility towards sibling was also evident. Differences across ages involve the depth of awareness of the sibling’s condition and its implications. Acknowledgement of future responsibilities was evident regardless of age.

Keywords: adolescents, emotions, experiences, perceptions, qualitative research, siblings with ASD

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36 Critical Thinking Index of College Students

Authors: Helen Frialde-Dupale

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Critical thinking Index (CTI) of 150 third year college students from five State Colleges and Universities (SUCs) in Region I were determined. Only students with Grade Point Average (GPA) of at least 2.0 from four general classification of degree courses, namely: Education, Arts and Sciences, Engineering and Agriculture were included. Specific problem No.1 dealt with the profile variables, namely: age, sex, degree course, monthly family income, number of siblings, high school graduated from, grade point average, personality type, highest educational attainment of parents, and occupation of parents. Problem No. 2 determined the critical thinking index among the respondents. Problem No. 3 investigated whether or not there are significant differences in the critical thinking index among the respondents across the profile variables. While problem No.4 determined whether or not there are significant relationship between the critical thinking index and selected profile variables, namely: age, monthly family income, number of siblings, and grade point average of the respondents. Finally, on problem No. 5, the critical thinking instrument which obtained the lowest rates, were used as basis for outlining an intervention program for enhancing critical thinking index (CTI) of students. The following null hypotheses were tested at 0.05 level of significance: there are no significant differences in the critical thinking index of the third college students across the profile variables; there are no significant relationships between the critical thinking index of the respondents and selected variables, namely: age, monthly family income, number of siblings, and grade point average.

Keywords: attitude as critical thinker, critical thinking applied, critical thinking index, self-perception as critical thinker

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35 Seven Brothers and Sisters of Severely Disabled Children Speak up about Their Everyday Challenges and Needs : A Multiple Case Study

Authors: Myriam Castonguay, Florence Vinit

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This study aims to gain a better understanding of the lived experience of seven children growing up in a family where another child is severely disabled, informed by family systems theory and the socio-ecological model of development. In depth semi-structured interviews were conducted with seven children who described they everyday life since their brother’s or sister’s diagnosis. Thematic analysis revealed four themes : struggling with loneliness inside the family, supporting the disabled child through its journey, accommodating to a changing routine and keeping a “bubble” for oneself. Brothers and sisters depict a family life characterized by much loneliness, with severe disabilities requiring ongoing care and prolonged hospitalizations. In the midst of adversity, siblings describe themselves as highly committed to supporting the disabled child and to preserve family cohesion, even if that means getting exposed to emotionally challenging situations and adjusting their daily routine frequently. Children recount that keeping up with schoolwork and leisure activities of their own is central to their well-being. Having a space where one can reconnect with his ordinary life as a kid is also deemed very important. This study reminds us that more needs to be done to counteract the loneliness experienced by siblings through the family experience of disability. Family members and clinicians need to be extra vigilant to ensure siblings’ needs don’t go unnoticed or dismissed, as it may be difficult for this population of children to voice their own experience and needs. Family, school and other actors in the community may help brothers and sisters pursue their personal dreams, goals and projects, to continue experiencing well-being despite adverse life circumstances.

Keywords: sibling’s lived experience of disability, sibling’s needs at various levels of the ecosystem, family adjustment to the disability experience, supporting family wellness through the disability experience

Procedia PDF Downloads 41
34 Empathy in the Work of Physiotherapists in Slovakia

Authors: Vladimir Littva, Peter Kutis

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Based on common practice, we know that an empathic approach to a patient is one of the characteristics of a physiotherapist. Although empathy is regarded as an essential condition of the psychotherapeutic relationship, it has taken quite a while for attention to be paid to it in clinical practice. Patients who are experiencing a sense of understanding from health care providers are more willing to cooperate, and treatment within the optimistic attunes a more comfortable framework of care. Age, experience, family, education and the working environment may have an impact on the degree of empathy for paramedics. Within the KEGA project no. 003KU-4-2021, we decided to investigate the level of empathy in the work of physiotherapists in Slovakia. Research sample and Methods: The sample comprised 194 respondents – physiotherapists working on the territory of Slovakia. 112 were men and 82 women. The age of respondents was between 21 and 64 years of age. 133 were married, 51 were single and ten were divorced. 98 were living in the countryside and 96 in towns. Twenty-two grew up without siblings, 95 with one sibling and 77 with two and more siblings. In the survey, we used the Empathy Assessment Questionnaire (EAQ) with 18 questions with four possible answers: strongly disagree, disagree, agree; and strongly agree, which we validated linguistically and psychometrically. All data were statistically processed by SPSS 25. Results: We evaluated the intrinsic reliability of the questionnaire EAQ using Cronbach's Alpha and the coefficient is 0.756 in the whole set. This means that the questionnaire is a quite strong and reliable measurement tool. The mean for individual questions ranged from 2.39 to 3.74 (maximum was 4). In Pearson's correlations, we confirmed the significant differences between the groups regarding sex in 8 questions out of 18, regarding age in 5 questions, regarding family status in 4 questions and regarding siblings in 4 questions out of 18 at the level 5% (p <0.05). Conclusion: The results obtained during the research show the importance of adequate communication with the patient due to his health and well-being. Empathy in the physiotherapists’ profession is very important. It would be worthwhile if the students of physiotherapy would receive a course during their study that would deal exclusively with empathy, empathic approach, burnout, or psycho-emotional hygiene.

Keywords: empathy, approach, clinical practice, physiotherapists

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33 Predictors of School Drop out among High School Students

Authors: Osman Zorbaz, Selen Demirtas-Zorbaz, Ozlem Ulas

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The factors that cause adolescents to drop out school were several. One of the frameworks about school dropout focuses on the contextual factors around the adolescents whereas the other one focuses on individual factors. It can be said that both factors are important equally. In this study, both adolescent’s individual factors (anti-social behaviors, academic success) and contextual factors (parent academic involvement, parent academic support, number of siblings, living with parent) were examined in the term of school dropout. The study sample consisted of 346 high school students in the public schools in Ankara who continued their education in 2015-2016 academic year. One hundred eighty-five the students (53.5%) were girls and 161 (46.5%) were boys. In addition to this 118 of them were in ninth grade, 122 of them in tenth grade and 106 of them were in eleventh grade. Multiple regression and one-way ANOVA statistical methods were used. First, it was examined if the data meet the assumptions and conditions that are required for regression analysis. After controlling the assumptions, regression analysis was conducted. Parent academic involvement, parent academic support, number of siblings, anti-social behaviors, academic success variables were taken into the regression model and it was seen that parent academic involvement (t=-3.023, p < .01), anti-social behaviors (t=7.038, p < .001), and academic success (t=-3.718, p < .001) predicted school dropout whereas parent academic support (t=-1.403, p > .05) and number of siblings (t=-1.908, p > .05) didn’t. The model explained 30% of the variance (R=.557, R2=.300, F5,345=30.626, p < .001). In addition to this the variance, results showed there was no significant difference on high school students school dropout levels according to living with parents or not (F2;345=1.183, p > .05). Results discussed in the light of the literature and suggestion were made. As a result, academic involvement, academic success and anti-social behaviors will be considered as an important factors for preventing school drop-out.

Keywords: adolescents, anti-social behavior, parent academic involvement, parent academic support, school dropout

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32 The Investigation on Pre-Service Teachers' Critical Thinking Dispositions in Terms of Several Variables

Authors: Cüneyit Akar, Mustafa Başaran, Ufuk Uluçınar

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The purpose of this research is to examine the critical thinking dispositions of pre-service teachers in terms of several variables. In the line of this aim, we have investigated what their levels of critical thinking dispositions and whether there is any significant different in their critical thinking dispositions. Also, we have examined the relations between their critical thinking dispositions and their parents’ education statues, the number of their siblings, family income levels, and their religiosity level. 202 pre-service teachers who are studying at different departments at faculty of education at Uşak University participated in this research. In study, critical thinking dispositions scale by one of researchers was utilized and its validity and reliability was performed. The findings indicate that the level of their critical thinking dispositions was found to be .376 (arithmetic mean). On the other hand, we found that there is no significant difference in terms of their gender and the department at which they are studying. Furthermore, although there aren’t significant relationships between critical thinking dispositions and their mother education statues, their income levels, their religiosity levels and the number of their siblings; there is any significant positively at low level the relation between thinking dispositions and father educational statues. The findings obtained will be discussed together with literature and other research’ results.

Keywords: preservice teachers, critical thinking dispositions, pedagogy, education

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31 Botulinum A Toxin Injection in Two Filipino Brothers with X-linked Dystonia-Parkinsonism (XDP) in Cebu City, Philippines: A Case Report

Authors: Ana Katrina C. Longos, Jarungchai Anton S. Vatanagul

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Objectives: To present a case of two Filipino male siblings initially seen with parkinsonism and eventually with dystonia and to present botulinum A toxin as part of the treatment for X-linked dystonia parkinsonism in Cebu City. Discussion: A 54 year old man presented initially with parkinsonian symptoms and later developed oromandibular and truncal dystonia. Further history revealed that he had an older brother who also presented with the same symptoms. Neuroimaging done on both patients revealed CVD infarcts in the pons and corona radiata respectively which where were not compatible with their symptoms. Family history revealed that their mother was originally from Panay and a diagnosis of X-linked dystonia parkinsonism (XDP) was made. Both patients were able to receive botulinum A toxin injections which provided temporary relief of symptoms. Conclusion: XDP was considered in 2 Filipino male siblings who presented with oromandibular dystonia, truncal dystonia, shuffling gait, resting tremors with ancestry from Panay on the maternal side. There is no cure for XDP, only symptomatic treatment. Until recently, only oral chemotherapy was available in Cebu. Botulinum A toxin injection done in both patients afforded temporary resolution of symptoms.

Keywords: XDP, dystonia of Panay, lubag, dystonia parkinsonism, botulinum a toxin

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30 Evaluation of UI for 3D Visualization-Based Building Information Applications

Authors: Monisha Pattanaik

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In scenarios where users have to work with large amounts of hierarchical data structures combined with visualizations (For example, Construction 3d Models, Manufacturing equipment's models, Gantt charts, Building Plans), the data structures have a high density in terms of consisting multiple parent nodes up to 50 levels and their siblings to descendants, therefore convey an immediate feeling of complexity. With customers moving to consumer-grade enterprise software, it is crucial to make sophisticated features made available to touch devices or smaller screen sizes. This paper evaluates the UI component that allows users to scroll through all deep density levels using a slider overlay on top of the hierarchy table, performing several actions to focus on one set of objects at any point in time. This overlay component also solves the problem of excessive horizontal scrolling of the entire table on a fixed pane for a hierarchical table. This component can be customized to navigate through parents, only siblings, or a specific component of the hierarchy only. The evaluation of the UI component was done by End Users of application and Human-Computer Interaction (HCI) experts to test the UI component's usability with statistical results and recommendations to handle complex hierarchical data visualizations.

Keywords: building information modeling, digital twin, navigation, UI component, user interface, usability, visualization

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29 Mutation Analysis of the ATP7B Gene in 43 Vietnamese Wilson’s Disease Patients

Authors: Huong M. T. Nguyen, Hoa A. P. Nguyen, Mai P. T. Nguyen, Ngoc D. Ngo, Van T. Ta, Hai T. Le, Chi V. Phan

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Wilson’s disease (WD) is an autosomal recessive disorder of the copper metabolism, which is caused by a mutation in the copper-transporting P-type ATPase (ATP7B). The mechanism of this disease is the failure of hepatic excretion of copper to bile, and leads to copper deposits in the liver and other organs. The ATP7B gene is located on the long arm of chromosome 13 (13q14.3). This study aimed to investigate the gene mutation in the Vietnamese patients with WD, and make a presymptomatic diagnosis for their familial members. Forty-three WD patients and their 65 siblings were identified as having ATP7B gene mutations. Genomic DNA was extracted from peripheral blood samples; 21 exons and exon-intron boundaries of the ATP7B gene were analyzed by direct sequencing. We recognized four mutations ([R723=; H724Tfs*34], V1042Cfs*79, D1027H, and IVS6+3A>G) in the sum of 20 detectable mutations, accounting for 87.2% of the total. Mutation S105* was determined to have a high rate (32.6%) in this study. The hotspot regions of ATP7B were found at exons 2, 16, and 8, and intron 14, in 39.6 %, 11.6 %, 9.3%, and 7 % of patients, respectively. Among nine homozygote/compound heterozygote siblings of the patients with WD, three individuals were determined as asymptomatic by screening mutations of the probands. They would begin treatment after diagnosis. In conclusion, 20 different mutations were detected in 43 WD patients. Of this number, four novel mutations were explored, including [R723=; H724Tfs*34], V1042Cfs*79, D1027H, and IVS6+3A>G. The mutation S105* is the most prevalent and has been considered as a biomarker that can be used in a rapid detection assay for diagnosis of WD patients. Exons 2, 8, and 16, and intron 14 should be screened initially for WD patients in Vietnam. Based on risk profile for WD, genetic testing for presymptomatic patients is also useful in diagnosis and treatment.

Keywords: ATP7B gene, mutation detection, presymptomatic diagnosis, Vietnamese Wilson’s disease

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28 Nuancing the Indentured Migration in Amitav Ghosh's Sea of Poppies

Authors: Murari Prasad

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This paper is motivated by the implications of indentured migration depicted in Amitav Ghosh’s critically acclaimed novel, Sea of Poppies (2008). Ghosh’s perspective on the experiences of North Indian indentured labourers moving from their homeland to a distant and unknown location across the seas suggests a radical attitudinal change among the migrants on board the Ibis, a schooner chartered to carry the recruits from Calcutta to Mauritius in the late 1830s. The novel unfolds the life-altering trauma of the bonded servants, including their efforts to maintain a sense of self while negotiating significant social and cultural transformations during the voyage which leads to the breakdown of familiar life-worlds. Equally, the migrants are introduced to an alternative network of relationships to ensure their survival away from land. They relinquish their entrenched beliefs and prejudices and commit themselves to a new brotherhood formed by ‘ship siblings.’ With the official abolition of direct slavery in 1833, the supply of cheap labour to the sugar plantation in British colonies as far-flung as Mauritius and Fiji to East Africa and the Caribbean sharply declined. Around the same time, China’s attempt to prohibit the illegal importation of opium from British India into China threatened the lucrative opium trade. To run the ever-profitable plantation colonies with cheap labour, Indian peasants, wrenched from their village economies, were indentured to plantations as girmitiyas (vernacularized from ‘agreement’) by the colonial government using the ploy of an optional form of recruitment. After the British conquest of the Isle of France in 1810, Mauritius became Britain’s premier sugar colony bringing waves of Indian immigrants to the island. In the articulations of their subjectivities one notices how the recruits cope with the alienating drudgery of indenture, mitigate the hardships of the voyage and forge new ties with pragmatic acts of cultural syncretism in a forward-looking autonomous community of ‘ship-siblings’ following the fracture of traditional identities. This paper tests the hypothesis that Ghosh envisions a kind of futuristic/utopian political collectivity in a hierarchically rigid, racially segregated and identity-obsessed world. In order to ground the claim and frame the complex representations of alliance and love across the boundaries of caste, religion, gender and nation, the essential methodology here is a close textual analysis of the novel. This methodology will be geared to explicate the utopian futurity that the novel gestures towards by underlining new regulations of life during voyage and dissolution of multiple differences among the indentured migrants on board the Ibis.

Keywords: indenture, colonial, opium, sugar plantation

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27 Investigating Problems and Social Support for Mothers of Poor Households

Authors: Niken Hartati

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This study provides a description of the problem and sources of social support that given to 90 mothers from poor households. Data were collected using structured interviews with the three main questions: 1) what kind of problem in mothers daily life, 2) to whom mothers ask for help to overcome it and 3) the form of the assistances that provided. Furthermore, the data were analyzed using content analysis techniques were then coded and categorized. The results of the study illustrate the problems experienced by mothers of poor households in the form of: subsistence (37%), child care (27%), management of money and time (20%), housework (5%), bad place of living (5%), the main breadwinner (3%), and extra costs (3%). While the sources of social support that obtained by mothers were; neighbors (10%), extended family (8%), children (8%), husband (7%), parents (7%), and siblings (5%). Unfortunately, more mothers who admitted not getting any social support when having problems (55%). The form of social support that given to mother from poor household were: instrumental support (91%), emotional support (5%) and informational support (2%). Implications for further intervention also discussed in this study.

Keywords: household problems, social support, mothers, poor households

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26 Foodxervices Inc.: Corporate Responsibility and Business as Usual

Authors: Allan Chia, Gabriel Gervais

Abstract:

The case study on FoodXervices Inc shows how businesses need to reinvent and transform themselves in order to adapt and thrive and it also features how an SME can also devote resources to CSR causes. The company, Ng Chye Mong, was set up in 1937 and it went through ups and downs and encountered several failures and successes. In the 1970’s, the management of the company was entrusted to the next generation who continued to manage and expanded the business. In early 2003, the business encountered several challenges. A pair of siblings from the next generation of the Ng family joined the business fulltime and together they set-out to transform the company into FoodXervices Inc. In 2012, they started a charity, Food Bank Singapore Pte Ltd. The authors conducted case study research involving a series of in-depth interviews with the business owner and staff. This case study is an example of how to run a business and coordinate a charity concurrently while mobilising the same resources. The uniqueness of this case is the operational synergy of both the business and charity to promote corporate responsibility causes and initiatives in Singapore.

Keywords: family-owned business, charity, corporate social responsibility, branding

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25 Experiences and Perceptions of Parents Raising Children with Autism

Authors: Tamene Keneni, Tibebu Yohannes

Abstract:

The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on the rise globally, and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries, including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. To this end, we used a qualitative survey to collect data from a convenient sample of parents raising a child with autism. The data collected were subjected to qualitative analysis that yielded several themes and subthemes, including late diagnosis, parents’ reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members, and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. The themes and subthemes identified were discussed in light of existing literature, and implications for practice were drawn.

Keywords: ASD, autism, children with autism, raising children with autism

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24 Sociological Analysis of Fulfillment Regarding Basic Needs of Females(Women) at Home with Special Reference of Balochistan (Pakistan)

Authors: Shabana Mohammad, Muhammad Irfan

Abstract:

The aim of this study was to bring out the facts regarding the effects of gender discrimination in fulfilling the basic needs of females at home. The purpose of the study was to observe whether gender discrimination affects the fulfillment of their basic needs in comparison to male siblings. Balochistan is the largest province of Pakistan geographically and has a tribal system. Due to having tribal systems, the women are not treated equally as men at home because males are considered the strength and privilege of tribes; males are more valuable because they support their families economically as well, and females are not allowed to work outside the home. That’s why females are deprived of their basic needs of life. The females (women) are neglected to have better nourishment, health facilities, easy access to get an education, safe house, and self-confidence. The type of research is quantitative, and data was collected from all government girls’ degree colleges of Quetta city (the capital of Balochistan province) under the age of 18. Two hundred (200) Students of all FA arts faculty (first year) were selected through simple random sampling (fishbowl draw). Data were analyzed by SPSS, and a coefficient test was applied to test the hypothesis. The regression of coefficient has a significant association between gender discrimination and basic needs (P-value =.000). The results showed that women are underprivileged from all basic needs (fundamental rights) of life, which are entitled to everyone by their birth because of male preference that creates gender disparity between men and women.

Keywords: basic needs, discrimination, value of women at home, hurdles of women

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23 Family Cohesion, Interpersonal Difficulties and Mental Health Problems in University Students

Authors: Narmeen Ali, Muhammad Arshad

Abstract:

Cohesion has an exact association with family functioning and enmeshment (togetherness) on one side and disengagement (separateness) on the other. Family cohesion can apprehend as a concerned association that family members have with each other and an affirmation of association inside the family. Family cohesion, assigned as the level of congruity or sympathetic or emotional attachment that relatives have toward each other, and it was seen to be associated with relational well-being and feeling of comfort in the young generation. The cross-sectional research design was used by the researcher to answer the research questions. A stratified sampling technique was used to collect the data from the participants. The data was collected equally from the males and females of different universities and different departments of Lahore, Pakistan. A self-report questionnaire was developed of given literature and which were found to be associated with family cohesion, interpersonal difficulties and mental health problems of university students. The demographic information included age, gender, university’s name, class, family system, parent’s education, parent’s profession, number of siblings and birth order. Correlation shows the negative relation between balanced cohesion and interpersonal difficulties, while interpersonal difficulties have a highly positive relationship with mental health problems. Mental health problems also have a negative correlation with the balanced family cohesion. Gender, family system, depression and anxiety are the significant predictors of interpersonal difficulties scale in university students. And gender showed a significant difference regarding family cohesion and interpersonal difficulty scale, as women reported more interpersonal difficulties than men.

Keywords: family cohesion, interpersonal difficulties, mental health problems, university students

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22 Family Depression and Its Relationship with Disability

Authors: Humara Bano, Nyla Anjum

Abstract:

Disability in any form has great impact not only for the person facing it but also for its family members too. This effect may be so severe that may lead to mal adjustment of any member of the family in society as well. This impact has also been multiplied due to negative attitudes of the society, unawareness about the needs of special needs and no legislation for the parents of children with special needs. As a result not only the separations among the parents have been reported but also the normal siblings in the home are also badly affected in their daily lives. The situation is more challenging when more than one child with disability is present in the family. The main objectives of this paper are to unfold the relationship of variety of disabilities (hearing, visual or physical impairment, mental retardation, speech impairment) in i) developing depression in home setting, ii) social exclusion, iii) anxiety and aggression and iv) development of insecure feelings among family members of the persons with disabilities, as well as, v) to identify coping strategies to manage the special needs by family members too. To reach on conclusion about fifty families (having any sort of disability in their homes) have been interviewed on basis of convenient sampling. Correlation, ANOVA and different analysis have been used to identify the relationship of disability in developing depression among family members in line of above mentioned problems. Results revealed that depression due to disability among families is a common phenomenon and adversely have affected their lives in daily routines as well as in following their life achievements. Coping with the situation and recommending various remedies by parents is the positive reflection of this study too that can help to families in managing their mental health.

Keywords: depression, anxiety and aggression, social exclusion, parents of children with special needs

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21 Islamic Perspective on Autism Spectrum Disorder: Lived Experience of Muslim Families of Children with Autism Spectrum Disorder in a City in the UK

Authors: Hawa Khan

Abstract:

Autism is a complex disorder related to abnormalities in the development of brain structure and neurological function and a new phenomenon which is epidemically on the increase. The Muslim community, with its profound commitment to the all-encompassing Islamic precedence, views all phenomena in the light of religious imperatives. How autism is understood and treated in these communities is key to successful inclusive services. Moreover, parents mentioned their Islamic faith as a coping mechanism for the challenges they faced while caring for their child. This study utilises interpretative phenomenology analysis as a methodology that seeks to interpret the meaning the participants make of their experiences, which extends descriptive analysis. Semi-structured interviews were conducted with 5 family units that included fathers, mothers, grandparents, and siblings. In the preliminary stage, this study found families give high importance of accessible Islamic education for their child and questioning the accountability of the child who might not be able to follow the Islamic way of life entirely or understand the concept of Allah. Moreover, the families expressed their beliefs in traditional and religious treatment as an effective way to treat and cure autism. This poses a major barrier between families seeking support and professionals providing services. Consequentially, it can also result in a low uptake of mainstream services from the Muslim community. Exploring the lived experiences of parents from the Muslim community and how ASD is conceptualised in this community could have implications for improved and effective home, community, and service collaboration.

Keywords: autism spectrum disorder, Islamic education, religious beliefs, mainstream services

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20 Genomic Identification of Anisakis Simplex Larvae by PCR-RAPD

Authors: Fumiko Kojima, Shuji Fujimoto

Abstract:

Anisakiasis is a disease caused by infection with an anisakid larvae, mostly Anisakis simplex. The larvae commonly infect in marine fish and the disease is frequently reported in areas of the world where fish is consumed raw, lightly pickled or salted. In Japan, people have the habit of eating raw fish such as ‘sushi’ or ‘sashimi’, so they have more chance of infection with larvae of anisakid nematodes. There are three sibling species in A. simplex larvae, namely, A. simplex sensu stricto (Asss), A. pegreffii (Ap) and A. simplex C. It was revealed that Ap is dominant among the larvae from fish (Scomber japonics) in the Japan Sea side and Asss is dominant among those of the Pacific Ocean side conversely. Although anisakiasis has happened in Japan among both the Japan Sea side area and the Pacific Ocean side area. The aim of this study was to investigate genetic variations between the siblings (Asss and Ap) and within the same sibling species by random amplified polymorphic DNA (RAPD) technique. In order to investigate the genetic difference among the each A. simplex larvae, we used RAPD technique to differentiate individuals of A. simplex obtained from Scomber japonics fish those were caught in the Japan sea (Goto Islands in Nagasaki Prefecture) and the cost of Pacific Ocean (Kanagawa Prefecture). The RAPD patterns of the control DNA (Genus Raphidascaris) were markedly different from those of the A. simplex. There were differences in amplification patterns between Asss and Ap. The RAPD patterns for larvae obtained from fish of the same sea were somewhat different and variations were detected even among larvae from the same fish. These results suggest the considerable high genetic variability between Asss and Ap and the possible existence of genetic variation within the sibling species.

Keywords: Anisakiasis in Japan, Anisakis simplex, genomic identification, PCR-RAPD

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19 A Case Study Approach on Co-Constructing the Idea of 'Safety' with Children

Authors: Beng Zhen Yeow

Abstract:

In most work that involves children, the voice of the children is often not heard. This is ironic since a lot of discussions might involve their welfare and safety. It might seem natural that the professionals should hear from them about what they wish for instead of deciding what is best for them. However, this, unfortunately, might be more the exception than the norm in most case and hence in many instances, children are merely 'subjects' in conversations about safety instead of active participants in the construction or creation of safety in the family. There might be many reasons why it does not happen in our work. Firstly, professionals have learnt how to 'socialise' into their professional roles and hence in the process become 'un-childlike'. Secondly, there is also a lack of professional training with regards to how to talk with children. Finally, there might be also a lack of concrete tools and techniques that are developed to facilitate the process. In this paper, the case study method is used to show how the idea of safety could be concretised and discussed with children and their family members, and hence making them active participants and co-creators of their own safety. Specific skills and techniques are highlighted through the case study. In this case, there was improvement in outcomes like no repeated offence or abuse. In addition, children were also able to advocate for their own safety after six months of intervention and how the family members were able to explicitly say what they can do to improve safety. The professionals in the safety network reported significant improvements. On top of that, the abused child who was removed due to child protection concerns, had verbalized observations of change in mother’s parenting abilities, and has requested for home leave to begin due to ownership of safety planning and having confidence to co-create safety for her siblings and herself together with the professionals in the safety network. Children becoming active participants in the co-creation of safety not only serve the purpose in allowing them to own a 'voice' but at the same time, give them greater confidence to protect themselves at home and in other contexts outside of home.

Keywords: partnering for safety, collaborative social work, family and systemic psychotherapy, child protection

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18 Estimating Interdependence of Social Statuses in a Cooperative Breeding Birds through Mathematical Modelling

Authors: Sinchan Ghosh, Fahad Al Basir, Santanu Ray, Sabyasachi Bhattacharya

Abstract:

The cooperatively breeding birds have two major ranks for the sexually mature birds. The breeders mate and produce offspring while the non-breeding helpers increase the chick production rate through help in mate-finding and allo-parenting. However, the chicks also cooperate to raise their younger siblings through warming, defending and food sharing. Although, the existing literatures describes the evolution of allo-parenting in birds but do not differentiate the significance of allo-parenting in sexually immature and mature helpers separately. This study addresses the significance of both immature and mature helpers’ contribution to the total sustainable bird population in a breeding site using Blue-tailed bee-eater as a test-bed species. To serve this purpose, a mathematical model has been built considering each social status and chicks as separate but interactive compartments. Also, to observe the dynamics of each social status with changing prey abundance, a prey population has been introduced as an additional compartment. The model was analyzed for stability condition and was validated using field-data. A simulation experiment was then performed to observe the change in equilibria with a varying helping rate from both the helpers. The result from the simulation experiment suggest that the cooperative breeding population changes its population sizes significantly with a change in helping rate from the sexually immature helpers. On the other hand, the mature helpers do not contribute to the stability of the population equilibrium as much as the immature helpers.

Keywords: Blue-tailed bee eater, Altruism, Mathematical Ethology, Behavioural modelling

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17 A Qualitative Study of the Effect of Sibling and Parental Relationships on Coping Mechanisms in Families of Children with Autism Spectrum Disorder

Authors: Smriti Gour, Neelam Pandey

Abstract:

The objective of this study was to describe and analyse the mutual relationship between the coping mechanisms used by the families of a child with Autism Spectrum Disorder (ASD) and family dynamics and the effect sibling interactions have on the dynamics and coping mechanisms in an urban setup. In-depth interviews were conducted for 25 families, with 4 members each in the Delhi NCR area in India. The families who were interviewed had a younger child who had received a diagnosis of ASD between the ages of 5-12. The in-depth questionnaires contained open-ended questions and the interviews were conducted separately for the mother, father and the typically developing sibling. The key findings of the study suggested that lack of communication was a common factor in most families (n=19) leading to other difficulties like stress and relationship dysfunction. It also fostered a fallacious perception of the relationship dynamics in the family in most of the interviewed families and changed depending on the family member being interviewed. In families where the typically developing elder sibling had a good relationship with the autistic child, the family dynamics were found to be more stable, and the overall family well-being was better maintained. The coping mechanisms employed by the families were also more positive and tended to work better if the typically developing sibling maintained a positive and interactive relationship with the parents and the autistic child. The type of coping mechanisms had a major impact on the relationship between the parents and in dictating the dynamics of the family of the child with ASD. Spirituality, professional help, family support and household help emerged to be the most effective coping mechanisms for the families, with spirituality emerging to be the most positive and effective coping mechanism in the families interviewed.

Keywords: autism spectrum disorder, coping mechanism, family dynamics, parental relationships, siblings

Procedia PDF Downloads 254