Search results for: child abuse

Authors: Josee Charette

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The academic and educational success of migrant students is a current issue in education, especially in western societies such in the province of Quebec, in Canada. For people who immigrate with school-age children, the success of the family’s migratory project is often measured by the benefits drawn by children from the educational institutions of their host society. In order to support the academic achievement of their children, migrant parents try to develop practices that derive from their representations of school and related challenges inspired by the socio-cultural context of their country of origin. These findings lead us to the following question: How does strategies implemented by migrant parents to manage the representational distance between school of their country of origin and school of their host society support or not the academic and educational success of their child? In the context of a qualitative exploratory approach, we have made interviews in the French , English and Spanish languages with 32 newly immigrated parents and 10 of their children. Parents were invited to complete a network of free associations about «School in Quebec» as a premise for the interview. The objective of this paper is to present strategies implemented by migrant parents to manage the distance between their representations of schools in their country of origin and in the host society, and to explore the influence of this management on their child’s academic and educational trajectories. Data analysis led us to develop various types of strategies, such as continuity, adaptation, resources mobilization, compensation and "return to basics" strategies. These strategies seem to be part of a continuum from oppositional-conflict scenario, in which parental strategies act as a risk factor, to conciliator-integrator scenario, in which parental strategies act as a protective factor for migrant students’ academic and educational success. In conclusion, we believe that our research helps in highlighting strategies implemented by migrant parents to support their child’s academic and educational success in the host society and also helps in providing a more efficient support to migrant parents and contributes to develop a wider portrait of migrant students’ academic achievement.

Keywords: academic and educational achievement of immigrant students, family’s migratory project, immigrants parental strategies, representational distance between school of origin and school of host society

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Authors: M. Munirul Islam, Makhduma Khatun M., Janet M. Peerson, Tahmeed Ahmed, M. Abid Hossain Mollah, Kathryn G. Dewey, Kenneth H. Brown

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Information is required on the effects of dietary energy density (ED) and feeding frequency (FF) of complementary foods (CF) on food consumption during individual meals and time expended in child feeding. We evaluated the effects of varied ED and FF of CFs on food intake and time required for child feeding during individual meals. During 9 separate, randomly ordered dietary periods lasting 3-6 days each, we measured self-determined intakes of porridges by 18 healthy, breastfed children 8-11 mo old who were fed coded porridges with energy densities of 0.5, 1.0 or 1.5 kcal/g, during 3, 4, or 5 meals/d. CF intake was measured by weighing the feeding bowl before and after every meal. Children consumed greater amounts of CFs per meal when they received diets with lower ED (p = 0.044) and fewer meals per day (p < 0.001). Food intake was less during the first meal of the day than the other meals. Greater time was expended per meal when fewer meals were offered. Time expended per meal did not vary by ED, but the children ate the lower ED diets faster (p = 0.019). Food intake velocity was also greater when more meals were offered per day (p = 0.005). These results provide further evidence of young children’s ability to regulate their energy intakes, even during infancy; and they convey information on factors that affect the amount of time that caregivers must devote to child feeding.

Keywords: complementary foods, energy density, feeding frequency, young children

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Authors: Muhammad Adamu Kwankwaso

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Early childhood is a critical period of rapid physical, cognitive and psycho-social development of a child. The quality of care and Education which a child receives at this crucial age will determine to a great extent the level of his/her physical and cognitive development in the future. In Nigeria, Early Childhood Care and Education (ECCE) is a fundamental aspect or form of Education for children between the age of 3-6. It was started after independence as pre-primary Education or early child development as contained in the 1977 National Policy on Education. The trends towards ECCE in Nigeria and the northwestern part of the country in particular keep up changing as in the case of other part of the world. The current trends are now towards expansions, inclusiveness, redefinition, early literacy, increased government participation and the unprecedented societal response and awareness towards the Education of the younger children. While all hands are on deck to ensure successful implementation of the ECCE programme, it is unfortunate that, ECCE is facing some challenges. This paper therefore, examines the trends in Early Childhood Care and Education and the major challenges in the north west of Nigeria. Some of the major challenges include, inadequate trained ECCE teachers, lack of unified curriculum, teacher pupil’s ratio, and the medium of instructions and inadequate infrastructural and teaching facilities respectively. To improve the situation the paper offered the following recommendations; establishment of more ECCE classes, enforcement for the use of mothers’ tongue or the languages of the immediate community as a medium of instructions, and adequate provision of infrastructural facilities and the unified curriculum across the northwestern States of Nigeria.

Keywords: early childhood care, education, trends, challenges

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Authors: Debra L. Stanley, Gabriela Wasileski

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Offenders face many challenges as they transition from being incarcerated to the community, ranging from housing and employment needs to long standing problems with addictions and mental health issues. A lack of appropriate behavioral health services in the more remote parts of the United States has led to a significant illegal substance abuse problem, housing instability, and unaddressed mental health and trauma issues. High rates of poverty and unemployment exacerbate the growing behavioral health issues, drug overdoses, co-occurring disorders, and crime that are so prevalent across rural communities. This study examines the challenges of rural jail reentry faced by offenders in a treatment capacity. The client-centered evidence-based program is uniquely designed to provide continuity of care that focuses on issues which affect rural communities. Prior to release from jail, individuals go through comprehensive assessment screenings to measure mental health and substance use disorder as well as trauma and prior crime victimization histories; the assessments help to target client-specific services. The quasi-experimental research design tracks clients throughout their recovery and reintegration into the community. Individuals in a rural program often do not have the benefit of easy access or peer mentoring that is so often found in urban recovery programs. Therefore, much of the support is provided through telehealth and e-services. The goal of this study is to explore the nature of rural reentry programs and measures of recidivism, drug overdoses, and other behavioral health needs and successful reentry to include stable housing and employment.

Keywords: jail reentry, rehabilitation, behavioral health, drug abuse, recidivism

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Authors: Allison Tucker, Carolyn Clarke, Erin Keith

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Introduction: In education, the determination to uncover privileged practices requires critical reflection to be placed at the center of both pre-service and in-service teacher education. Confronting deficit thinking about children’s abilities and shifting to holding an image of the child as capable and competent is necessary for teachers to engage in responsive pedagogy that meets children where they are in their learning and builds on strengths. This paper explores the ways in which early elementary teachers' perceptions of the assets of children might shift through the pedagogical use of video clubs. Video club is a pedagogical practice whereby teachers record and view short videos with the intended purpose of deepening their practices. The use of video club as a learning tool has been an extensively documented practice. In this study, a video club is used to watch short recordings of playing children to identify the assets of their students. Methodology: The study on which this paper is based asks the question: What are the ways in which teachers’ image of the child and teaching practices evolve through the use of video club focused on the strengths of children demonstrated during play? Using critical reflection, it aims to identify and describe participants’ experiences of examining their personally held image of the child through the pedagogical tool video club, and how that image influences their practices, specifically in implementing play pedagogy. Teachers enrolled in a graduate-level play pedagogy course record and watch videos of their own students as a means to notice and reflect on the learning that happens during play. Using a co-constructed viewing protocol, teachers identify student strengths and consider their pedagogical responses. Video club provides a framework for teachers to critically reflect in action, return to the video to rewatch the children or themselves and discuss their noticings with colleagues. Critical reflection occurs when there is focused attention on identifying the ways in which actions perpetuate or challenge issues of inherent power in education. When the image of the child held by the teacher is from a deficit position and is influenced by hegemonic dimensions of practice, critical reflection is essential in naming and addressing power imbalances, biases, and practices that are harmful to children and become barriers to their thriving. The data is comprised of teacher reflections, analyzed using phenomenology. Phenomenology seeks to understand and appreciate how individuals make sense of their experiences. Teacher reflections are individually read, and researchers determine pools of meaning. Categories are identified by each researcher, after which commonalities are named through a recursive process of returning to the data until no more themes emerge or saturation is reached. Findings: The final analysis and interpretation of the data are forthcoming. However, emergent analysis of the data collected using teacher reflections reveals the ways in which the use of video club grew teachers’ awareness of their image of the child. It shows video club as a promising pedagogical tool when used with in-service teachers to prompt opportunities for play and to challenge deficit thinking about children and their abilities to thrive in learning.

Keywords: asset-based teaching, critical reflection, image of the child, video club

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Authors: Beste Ozcan, Valerio Sperati, Laura Romano, Tania Moretta, Simone Scaffaro, Noemi Faedda, Federica Giovannone, Carla Sogos, Vincenzo Guidetti, Gianluca Baldassarre

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+me is an experimental interactive toy with the appearance of a soft, pillow-like, panda. Shape and consistency are designed to arise emotional attachment in young children: a child can wear it around his/her neck and treat it as a companion (i.e. a transitional object). When caressed on paws or head, the panda emits appealing, interesting outputs like colored lights or amusing sounds, thanks to embedded electronics. Such sensory patterns can be modified through a wirelessly connected tablet: by this, an adult caregiver can adapt +me responses to a child's reactions or requests, for example, changing the light hue or the type of sound. The toy control is therefore shared, as it depends on both the child (who handles the panda) and the adult (who manages the tablet and mediates the sensory input-output contingencies). These features make +me a potential tool for therapy with children with Neurodevelopmental Disorders (ND), characterized by impairments in the social area, like Autism Spectrum Disorders (ASD) and Language Disorders (LD): as a proposal, the toy could be used together with a therapist, in rehabilitative play activities aimed at encouraging simple social interactions and reinforcing basic relational and communication skills. +me was tested in two pilot experiments, the first one involving 15 Typically Developed (TD) children aged in 8-34 months, the second one involving 7 children with ASD, and 7 with LD, aged in 30-48 months. In both studies a researcher/caregiver, during a one-to-one, ten-minute activity plays with the panda and encourages the child to do the same. The purpose of both studies was to ascertain the general acceptability of the device as an interesting toy that is an object able to capture the child's attention and to maintain a high motivation to interact with it and with the adult. Behavioral indexes for estimating the interplay between the child, +me and caregiver were rated from the video recording of the experimental sessions. Preliminary results show how -on average- participants from 3 groups exhibit a good engagement: they touch, caress, explore the panda and show enjoyment when they manage to trigger luminous and sound responses. During the experiments, children tend to imitate the caregiver's actions on +me, often looking (and smiling) at him/her. Interesting behavioral differences between TD, ASD, and LD groups are scored: for example, ASD participants produce a fewer number of smiles both to panda and to a caregiver with respect to TD group, while LD scores stand between ASD and TD subjects. These preliminary observations suggest that the interactive toy +me is able to raise and maintain the interest of toddlers and therefore it can be reasonably used as a supporting tool during therapy, to stimulate pivotal social skills as imitation, turn-taking, eye contact, and social smiles. Interestingly, the young age of participants, along with the behavioral differences between groups, seem to suggest a further potential use of the device: a tool for early differential diagnosis (the average age of a child

Keywords: autism spectrum disorders, interactive toy, social interaction, therapy, transitional wearable companion

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Authors: Sonia Boscenco, Zihan Wang, Euclides José de Mendoça Filho, João Paulo Hoppe, Irina Pokhvisneva, Geoffrey B.C. Hall, Michael J. Meaney, Patricia Pelufo Silveira

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Entropy can be described as a measure of the number of states of a system, and when used in the context of physiological time-based signals, it serves as a measure of complexity. In functional connectivity data, entropy can account for the moment-to-moment variability that is neglected in traditional functional magnetic resonance imaging (fMRI) analyses. While brain fMRI resting state entropy has been associated with some pathological conditions like schizophrenia, no investigations have explored the association between brain entropy measures and individual differences in child behavior in healthy children. We describe a novel exploratory approach to evaluate brain fMRI resting state data in two child cohorts, and MAVAN (N=54, 4.5 years, 48% males) and GUSTO (N = 206, 4.5 years, 48% males) and its associations to child behavior, that can be used in future research in the context of child exposures and long-term health. Following rs-fMRI data pre-processing and Shannon entropy calculation across 32 network regions of interest to acquire 496 unique functional connections, partial correlation coefficient analysis adjusted for sex was performed to identify associations between entropy data and Strengths and Difficulties questionnaire in MAVAN and Child Behavior Checklist domains in GUSTO. Significance was set at p < 0.01, and we found eight significant associations in GUSTO. Negative associations were found between two frontoparietal regions and cerebellar posterior and oppositional defiant problems, (r = -0.212, p = 0.006) and (r = -0.200, p = 0.009). Positive associations were identified between somatic complaints and four default mode connections: salience insula (r = 0.202, p < 0.01), dorsal attention intraparietal sulcus (r = 0.231, p = 0.003), language inferior frontal gyrus (r = 0.207, p = 0.008) and language posterior superior temporal gyrus (r = 0.210, p = 0.008). Positive associations were also found between insula and frontoparietal connection and attention deficit / hyperactivity problems (r = 0.200, p < 0.01), and insula – default mode connection and pervasive developmental problems (r = 0.210, p = 0.007). In MAVAN, ten significant associations were identified. Two positive associations were found = with prosocial scores: the salience prefrontal cortex and dorsal attention connection (r = 0.474, p = 0.005) and the salience supramarginal gyrus and dorsal attention intraparietal sulcus (r = 0.447, p = 0.008). The insula and prefrontal connection were negatively associated with peer problems (r = -0.437, p < 0.01). Conduct problems were negatively associated with six separate connections, the left salience insula and right salience insula (r = -0.449, p = 0.008), left salience insula and right salience supramarginal gyrus (r = -0.512, p = 0.002), the default mode and visual network (r = -0.444, p = 0.009), dorsal attention and language network (r = -0.490, p = 0.003), and default mode and posterior parietal cortex (r = -0.546, p = 0.001). Entropy measures of resting state functional connectivity can be used to identify individual differences in brain function that are correlated with variation in behavioral problems in healthy children. Further studies applying this marker into the context of environmental exposures are warranted.

Keywords: child behaviour, functional connectivity, imaging, Shannon entropy

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Authors: Katarzyna Kamińska

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When thinking about custodial arrangements after divorce or separation, there has been a shift from sole custody, particularly maternal preference, to joint physical custody. In many Western countries, an increasing of children with separated parents have joint physical custody, which is believed to be in the best interests of the child, as children can maintain personal relations and direct contact with both parents on a regular basis. The aim of the article is to examine joint physical custody, both from the perspective of the binding legal instruments that are relevant to joint physical custody, the Principles of European Family Law drafted by the CEFL, as well as the international research on this matter. The thesis underlying this paper is that joint physical custody is in itself neither good nor bad, and it depends on how the arrangements are managed by the parents. The paper includes a reflection on joint physical custody in the face of the COVID-19 crisis. The results indicate that in normal circumstances, joint physical custody demands broad communication, and now it times of crisis, we need over-communication about children and plans. Only a very tight and coordinated co-parenting plan make the whole family safer.

Keywords: joint physical custody, co-parenting, child welfare, COVID-19

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Authors: Terry Gomez

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This interpretive phenomenological qualitative study explored potential risks related to infant mental health with parental smartphone use while caring for infants. Data were collected through nine online interviews of first-time parents with infants under one-year-old. All parents reported using their smartphone during child-bonding activities such as playtime, feeding, and sleep-time. Results indicated that smartphone distractions appear to influence the synchrony of parent-child interactions. Infants displayed physical, verbal, or emotional reactions to parents’ smartphone distractions, indicating that smartphone use influences infants’ behaviors. Parents shared information on how smartphones helped them with their transition into parenthood. The findings of this study provide insights helpful to inform infant mental health professionals and parents about potential developmental consequences associated with parental technoference and absent presence.

Keywords: absent presence, infant mental health, parental distractions, smartphones, technoference

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Authors: Ewa Mojs, Katarzyna Wiechec, Maia Kubiak, Wlodzimierz Samborski

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Interactions between mother’s psychological condition and child’s health status are complex and derive from the nature of the mother-child relationship. The aim of the study was to analyze the issue of anxiety amongst mothers of short children in the aspect of growth hormone therapy. The study was based on a group of 101 mothers of originally short-statured children – 70 with growth hormone deficiency (GHD) treated with recombinant human growth hormone (rhGH) and 31 undergoing the diagnostic process, without any treatment. Collected medical data included child's gender, height and weight, chronological age, bone age delay, and rhGH therapy duration. For all children, the height SDS and BMI SDS were calculated. To evaluate anxiety in mothers, the Spielberger State-Trait Anxiety Inventory (STAI) was used. Obtained results revealed low trait anxiety levels, with no statistically significant differences between the groups. State anxiety levels were average when mothers of all children were analyzed together, but when divided into groups, statistical differences appeared. Mothers of children without diagnosis and treatment had significantly higher levels of state anxiety than mothers of children with GHD receiving appropriate therapy. These results show, that the occurrence of growth failure in children is not related to high maternal trait anxiety, but the lack of diagnosis and lack of appropriate treatment generates higher levels of maternal state anxiety than the process of rh GH therapy in the offspring. Commencement of growth hormone therapy induce a substantial reduction of the state anxiety in mothers, and the duration of treatment causes its further decrease.

Keywords: anxiety, development, growth hormone deficiency, motherhood

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Authors: C. Surmei

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Autism Spectrum Disorder (ASD) is a complex developmental disorder that can affect an individual’s (but is not limited to) cognitive development, emotional development, language acquisition and the capability to relate to others. Ecological Systems Theory is a sociocultural theory that focuses on environmental systems with which an individual interacts. The SCERTS Model is an educational approach and multidisciplinary framework that addresses the challenges confronted by individuals on the autism spectrum and other developmental disabilities. To aid the understanding of ASD and educational philosophies for families, educators, and the global community alike, a Comparative Analysis was undertaken to examine key variables (the child, society, education, nurture/care, relationships, communication). The results indicated that the Ecological Systems Theory and the SCERTS Model were comparable in focus, motivation, and application, attaining to a viable and notable relationship between both theories. This paper unpacks two child development philosophies and their relationship to each other.

Keywords: autism spectrum disorder, ecological systems theory, education, SCERTS model

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Authors: Xu Qian

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This abstract examines the concept of resilience in adolescents from both adolescent medicine and child psychology perspectives. It discusses the role of healthcare providers in fostering resilience among adolescents, encompassing physical, psychological, and social aspects. The paper highlights evidence-based interventions and practical strategies for promoting resilience in this population. Introduction: Resilience plays a crucial role in the healthy development of adolescents, enabling them to navigate through the challenges of this transitional period. This abstract explores the concept of resilience from the perspectives of adolescent medicine and child psychology, shedding light on the collective efforts of healthcare providers in fostering resilience. By integrating the principles and practices of these two disciplines, this abstract emphasizes the multidimensional nature of resilience and its significance in the overall well-being of adolescents. Methods: A comprehensive literature review was conducted, encompassing research articles, empirical studies, and expert opinions from both adolescent medicine and child psychology fields. The search included databases such as PubMed, PsycINFO, and Google Scholar, focusing on publications from the past decade. The review aimed to identify evidence-based interventions and practical strategies employed by healthcare providers to promote resilience among adolescents. Results: The review revealed several key findings regarding the promotion of resilience in adolescents. Firstly, resilience is a dynamic process influenced by individual characteristics, environmental factors, and the interaction between the two. Secondly, healthcare providers play a critical role in fostering resilience by addressing the physical, psychological, and social needs of adolescents. This entails comprehensive healthcare services that integrate medical care, mental health support, and social interventions. Thirdly, evidence-based interventions such as cognitive-behavioral therapy, social skills training, and positive youth development programs have shown promising outcomes in enhancing resilience. Discussion: The integration of adolescent medicine and child psychology perspectives provides a comprehensive framework for promoting resilience in adolescents. By acknowledging the interplay between physical health, psychological well-being, and social functioning, healthcare providers can tailor interventions to address the specific needs and challenges faced by adolescents. Collaborative efforts between medical professionals, psychologists, educators, and families are vital in creating a supportive environment that fosters resilience. Additionally, the findings highlight the importance of early identification and intervention, emphasizing the need for routine screening and assessment to identify adolescents at risk and provide timely support. Conclusion: Promoting resilience in adolescents requires a holistic approach that integrates adolescent medicine and child psychology perspectives. By recognizing the multifaceted nature of resilience, healthcare providers can implement evidence-based interventions and practical strategies to enhance the well-being of adolescents. The collaboration between healthcare professionals from different disciplines, alongside the involvement of families and communities, is crucial for creating a resilient support system. By investing in the promotion of resilience during adolescence, we can empower young individuals to overcome adversity and thrive in their journey toward adulthood.

Keywords: psychology, clinical psychology, child psychology, adolescent psychology, adolescent

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Authors: Minna K. Miller, Chantel. E. Canessa, Suzanna V. McRae, Susan Shumay, Alissa Collingridge

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Primary care provides the first point of contact and access to health care services. For the pediatric population, the goal is to help healthy children stay healthy and to help those that are sick get better. Primary care facilitates regular well baby/child visits; health promotion and disease prevention; investigation, diagnosis and management of acute and chronic illnesses; health education; both consultation and collaboration with, and referral to other health care professionals. There is a protective association between regular well-child visit care and preventable hospitalization. Further, low adherence to well-child care and poor continuity of care are independently associated with increased risk of hospitalization. With a declining number of family physicians caring for children, and only a portion of pediatricians providing primary care services, it is becoming increasingly difficult for children and their families to access primary care. Nurse practitioners are in a unique position to improve access to primary care and improve health outcomes for children. Limited literature is available on the nurse practitioner role in primary care pediatrics. The purpose of this paper is to describe the development, implementation and evaluation of a Nurse Practitioner-led pediatric primary care clinic in a tertiary care setting. Utilizing the participatory, evidence-based, patient-focused process for advanced practice nursing (PEPPA framework), this paper highlights the results of the initial needs assessment/gap analysis, the new service delivery model, populations served, and outcome measures.

Keywords: access, health outcomes, nurse practitioner, pediatric primary care, PEPPA framework

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Authors: Behnaz Farahani, Razieh Sotoudeh, Ali Vahdani, Hamed Abdi

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Individual differences in eating behavior can cause underweight or overweight and obesity. Thus influencing factors on children’s eating behavior such as mothers’ feeding practices are needed to be more investigated. The goals of this survey are to evaluate the association of (i) parental pressure and children’s food avoidant tendency, (ii) parental restriction and children’s food approach tendency, (iii) modeling of healthy eating in front of children and their children’s eating behavior. 760 mothers of children aged 7-10 from schools in Isfahan were asked to complete questionnaires including Child Feeding Questionnaire, Children’s Eating Behavior Questionnaire, Modeling Questionnaire, and self-administered demographic questionnaire in which mothers reported their children’s height and weight as well. Of those mothers, 745 completed the questionnaires for the children’s index (mean age: 8.513±1.112) during the 2011-2012 school year. The results of this quantitative, descriptive, cross-sectional analysis indicated that “parental restriction” was positively associated with child food responsiveness (P,0.000) and food enjoyment (P,0.000) and surprisingly, it was positively associated with Food Fussiness(0.000) .Parental pressure to eat was positively associated with child satiety responsiveness (P,0.000), slowness (P,0.000), and fussiness (P,0.00) and negatively associated with Food responsiveness(p,0.000)and Enjoyment of food (p,0.002), modeling of healthy eating were positively associated with Enjoyment of food / q (p,0.000) and negatively with food fussiness (P,0.000). The results of this survey will improve interventions and maternal guidance on their feeding practices and their association with children’s eating behavior and weight.

Keywords: feeding practices, eating behavior, pressure to eat, restriction, modeling, satiety responsiveness, slowness in eating, food fussiness, food responsiveness, enjoyment of food

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Authors: Aikaterini Tavoulari

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This research aims to address the types of repetitive behaviours (RBs) observed by adults in children with vision impairment (VI) or autism spectrum disorder (ASD), the explanations the adults employ to interpret these behaviours, and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The study is based on the interpretivism paradigm and follows a qualitative approach. A comparative case study design based on the ecological systems theory (EST) is adopted. Thirty-five caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted, and data were analysed according to the method of thematic analysis. A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation, and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely, and the macrosystem seems to drive the interactions between the ecological systems.

Keywords: ableism, social stigma, disability, repetitive behaviour, vision impairment, autism spectrum disorder, perceptions

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Authors: Geoff Skinner, Ilung Pranata

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The advancement of ICT innovations provides us with a comfortable and convenient modern lifestyle. However, this modern easy lifestyle is proving to have some serious health consequences. Such technological advancements that have dramatically increased ones time in front of screens have been a contributing factor to increasing rates of obesity. In particular the youth obesity issue has gained more and more attention from researchers and health institutions around the world. Although technology innovations may lead to a sedate modern life, they also have a potential to solve the obesity issue in children. This paper provides a review of the issues in child obesity and the potential of active video games to mitigate these issues. Additionally, the paper also discusses the key requirements to develop an active video game that hopes to help combat child obesity through motivating youth to exergame. A framework is introduced to meet the requirements, from which a prototype was implemented. Discussion of the simulation and testing that were performed to verify the attainment of objectives is also detailed.

Keywords: e-video games, exergaming, health informatics, human computer interaction

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Authors: Mohit Kumar, Beklashwar Salona, Shiv Murti, Mukesh Singh

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We report here a case of five-months old male baby, born as second child of non-consanguineous parents with no considerable history of genetic abnormality which was referred to our cytogenetic laboratory for chromosomal analysis. Physical dysmorphic facial features including mongoloid face, cleft palate, simian crease, and developmental delay were observed. We present this case with unique balanced autosomal translocation of t(3;10)(p21;p13). The risk of phenotypic abnormalities based on de novo balanced translocation was estimated to be 7%. The association of balanced chromosomal rearrangement with Down syndrome features such as multiple congenital anomalies, facial dysmorphism and congenital heart anomalies are very rare in a 5-months old male child. Trisomy-21 is not uncommon in chromosomal abnormality with the birth defect and balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion (RSA). Two ml heparinized peripheral blood cells cultured in RPMI-1640 for 72 hours supplemented with 20% fetal bovine serum, phytohemagglutinin (PHA), and antibiotics were used for chromosomal analysis. A total 30 metaphases images were captured using Olympus-BX51 microscope and analyzed using Bio-view karyotyping software through GTG-banding (G bands by trypsin and Giemsa) according to International System for Human Cytogenetic Nomenclature 2016. The results showed balanced translocation between short arm of chromosome # 3 and short arm of chromosome # 10. The karyotype of the child was found to be 46,XY,t(3;10)(p21; p13). Chromosomal abnormalities are one of the major causes of birth defect in new born babies. Also, balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion. The index case presented with dysmorphic facial features and had a balanced translocation 46,XY,t(3;10)(p21;p13). This translocation with break points at (p21; p13) has not been reported in the literature in a child with facial dysmorphism. To the best of our knowledge, this is the first report of novel balanced translocation t(3;10) with break points in a child with dysmorphic features. We found balanced chromosomal translocation instead of any trisomy or unbalanced aberrations along with some phenotypic abnormalities. Therefore, we suggest that such novel balanced translocation with abnormal phenotype should be reported in order to enable the pathologist, pediatrician, and gynecologist to have a better insight into the intricacies of chromosomal abnormalities and their associated phenotypic features. We hypothesized that dysmorphic features as seen in this case may be the result of change in the pattern of genes located at the breakpoint area in balanced translocations or may be due to deletion or mutation of genes located on the p-arm of chromosome # 3 and p-arm of chromosome # 10.

Keywords: balanced translocation, karyotyping, phenotypic abnormalities, facial dimorphisms

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Authors: Majse Lind, Carla Sharp, Salome Vanwoerden

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Narrative identity is the dynamic and evolving story individuals create about their personal pasts, presents, and presumed futures. This storied sense of self develops in adolescence and is crucial for fostering a sense of self-unity and purpose in life. A growing body of work has shown that several characteristics of narrative identity are disturbed in adults suffering from borderline personality disorder (BPD). Very little research, however, has explored the stories told by adolescents with BPD features. Investigating narrative identity early in the lifespan and in relation to personality pathology is crucial; BPD is a developmental disorder with early signs appearing already in adolescence. In the current study, we examine narrative identity (focusing on themes of agency and communion) coded from self-defining memories derived from the child attachment interview in 174 inpatient adolescents (M = 15.12, SD = 1.52) at the time of admission. The adolescents’ social cognition was further assessed on the basis of their reactions to movie scenes (i.e., the MASC movie task). They also completed a trauma checklist and self-reported BPD features at three different time points (i.e., at admission, at discharge, and 6 months after admission). Preliminary results show that adolescents who told stories containing themes of agency and communion evinced better social cognition, and lower emotional abuse on the trauma checklist. In addition, adolescents who disclosed stories containing lower levels of agency and communion demonstrated more BPD symptoms at all three time points, even when controlling for the occurrence of traumatic life events. Surprisingly, social cognitive abilities were not significantly associated with BPD features. These preliminary results underscore the importance of narrative identity as an indicator, and potential cause, of incipient personality pathology. Thus, focusing on diminished themes of narrative-based agency and communion in early adolescence could be crucial in preventing the development of personality pathology over time.

Keywords: borderline personality disorder, inpatient adolescents, narrative identity, follow-ups

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Roshanak Farjad, Amirhossein Hosseini

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Fecal incontinence (FI) is a stressful condition for children and their parents that may affect the patient’s psychological well-being. Evaluating the patients’ psychological status may help physicians manage the disease effectively. This study aimed to assess the emotional and behavioral disturbances in children with FI who were referred to the pediatric gastroenterology clinic in Mofid Children’s Hospital from April 2021 to 2022. This cross-sectional study included children (over four years old) with chronic constipation and fecal incontinence. The diagnosis of chronic constipation and FI were made according to Rome-IV criteria. The Child Behavior Checklist (CBCL) evaluated patients’ emotional, behavioral, and social problems. One hundred one patients with a mean age of 7.96 years were enrolled in the study; 67.32% were males. According to CBCL, 12% (12 patients) indicated emotional and behavioral problems, with CBCL scores in the clinical or at-risk range. We detected anxious/depressed problems in five (4.95%), withdrawn/depressed problems in eight (7.92%), somatic complaints in seven (6.93%), social problems in eight (7.92%), thought problems in nine (8.91%), attention problems in seven (6.93%), rule-breaking behavior in two (1.98%), and aggressive behavior in nine (8.91%) patients. The risk of internalizing and externalizing disorders was reported in four (3.96%) and five (4.95%) patients. Also, eight (7.92%) and seven (6.93%) patients had clinical symptoms of internalizing and externalizing disorders, respectively. There was no significant relationship between patients’ age and gender with the CBCL scores in any subscales. However, there was a significant difference in the total score among the age groups (P = 0.04). The relatively high prevalence of emotional, behavioral, and social problems in our study corroborates the importance of psychological screening of children with FI during the treatment process.

Keywords: chronic constipation, child behavior checklist (CBCL), fecal incontinence, rome-IV criteria

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Authors: Adebusoye Michael, Okunola Olayinka, Owolabi Abdulateef, Jacob Anayo

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Introduction: Child undernutrition remains one of Africa’s most fundamental challenges for improved human development because the time and capacities of caregivers are limited; far too many children are unable to access effectively amenities they need for a healthy life. Methods and procedures: This cross-sectional, descriptive study evaluated the maternal care practices on nutritional status of pre-school children, 150 mothers were selected by systematic random sampling in Dass L.G.A., Bauchi-State, Nigeria. Information on relevant parameters were collected by questionaire, analysed by various indices of descriptive statistics using SPSS version 16.0.Spearman’s rank correlation was used to test for associations between the variables. Results: Thirty-five (23.3%) of the respondents were aged 21-25 years. Thirty-three (28.0%) had secondary education, while forty-nine (32.7%) were full housewives. Majority 79(52.7) earned NI,000- N10,000 monthly versus 10(6.7%) who earned N11,000- N20,000.113(75.3%) married while 7(4.7%) of respondents were separated. Sixty-one (40.7%) practiced exclusive breastfeeding within six months. Only seventy-one (47.3%) initiated breastfeeding between 7 and 13 months. Five (3.3%) of children were mildly underweight while nine (6.0%) were severely stunted. Conclusion: The outcome suggested that working time of mothers is a major determinant on their child nutritional status. However, there is a significant relationship on the working time of mothers, income level and educational level of mothers to the nutritional status of their children (P<0.05). Recommendation: Good policy programmes should aim at eradicating poverty, better child care practices that would reduce malnutrition among under-five children.

Keywords: maternal care, nutritional status, preschool children, Dass L.G.A.

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Authors: Aisling Parkes, Fiona Donson

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There is no doubt that parental imprisonment directly alters the social experiences of childhood for many children worldwide today. Indeed, the extent to which meaningful contact with a parent in prison can positively impact on the life of a child is well documented as are the benefits for the prisoner, particularly in the long term and post-release. However, despite the growing acceptance of children’s rights in Ireland over the past decade in particular, it appears that children’s rights have not yet succeeded in breaking through the walls of Irish prisons when children are visiting an incarcerated parent. In a prison system that continues to prioritise security over all other considerations, little attention has been given to the importance of recognising and protecting the rights of children affected by parental imprisonment in Ireland for children, families and society in the long term. This paper will present the findings which have emerged from a national qualitative research project (the first of its kind to be conducted in Ireland) which examines the current visiting conditions for children and families, and the related culture of visitation within the Irish Prison system. This study investigated, through semi-structured interviews and focus groups, the unique and specialist perspectives of senior prison management, prison governors, prison officers, support organisations, prison child care workers, as well as those with a family member in prison who have direct experience of prison visits in Ireland which involve children and young people. The reality of the current system of visitation that operates in Irish prisons and its impact on children’s rights is presented from a variety of perspectives. The idea of what meaningful contact means from a children’s rights based perspective is interrogated as are the benefits long term for both the child and the offender. The current system is benchmarked against well-accepted international children’s rights norms as reflected under the UN Convention on the Rights of the Child 1989. The dissonance that continues to exist between the theory of children’s rights which includes the right to maintain meaningful contact with a parent in prison and current practice and procedure in Irish Prisons will be explored. In adopting a children’s rights based perspective combined with socio-legal research, this paper will explore the added value that this approach to prison visiting might offer in responding to this particularly marginalised group of children in terms of their social experience of childhood. Finally, the question will be raised as to whether or not there is a responsibility on prisons to view children as independent rights holders when they come to visit the prison or is the prison entitled to focus solely on the prisoner with their children being viewed as a circumstance of the offender? Do the interests of the child and the prisoner have to be exclusive or is there any way of marrying the two?

Keywords: children’s rights, prisoners, sociology, visitation

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Authors: Bindu S., Malavika Anakkathil Anil, Jayashree S. Bhat

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The dyadic interaction between the parent and child during story narration facilitates the emergence of early literacy skills. Early shared reading experiences positively predict better reading and language outcomes in children who experience rich communicative and effective interactions during shared book reading. However, research is yet to systematically explore mother’s perspective towards story narration and how employment may influence their perspectives. The study analysed the perspectives of employed and unemployed mothers of typically developing children between the age ranges of 2 to 5 years through a questionnaire which covered domains on story narration exposure and parental attitudes & beliefs. The results indicate no statistical difference between employed mothers (M=8.5, SD=3.4) and unemployed mothers (M=10.1, SD=1.06). Whereas, post-hoc comparisons using the scheffe test, revealed a significant difference in scores. An increasing score was obtained as the age of the child increased. This change could be attributed due to the integration of children in preschools which could have contributed to the change of perception towards story narration. Older children’s mother perceive story narration to be an important part of their curriculum, which could facilitate rich vocabulary and language output. Younger children’s parents are however not realising the significance of story narration and its impact on the emergent literacy skills. Parent-child interaction is a significant contributor to a healthy social and cultural development. The study emphasises on the need of mothers to engage in preliteracy based activities which contribute to better academic performance in later stages.

Keywords: early literacy skill, employment, language development, mother’s perspective, story narration

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Authors: M. Siedlikowski, F. Rauch, A. Tsimicalis

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Osteogenesis Imperfecta (OI) is a genetic disorder of childhood onset that causes frequent fractures after minimal physical stress. To date, OI research has focused on medically- and surgically-oriented outcomes with little attention on the perspective of the affected child. It is a challenge to elicit the child’s voice in health care, in other words, their own perspective on their symptoms, but software development offers a way forward. Sisom (Norwegian acronym derived from ‘Si det som det er’ meaning ‘Tell it as it is’) is an award-winning, rigorously tested, interactive, computerized tool that helps children with chronic illnesses express their symptoms to their clinicians. The successful Sisom software tool, that addresses the child directly, has not yet been adapted to attend to symptoms unique to children with OI. The purpose of this study was to develop a Sisom paper prototype for children with OI by seeking the perspectives of end users, particularly, children with OI and clinicians. Our descriptive qualitative study was conducted at Shriners Hospitals for Children® – Canada, which follows the largest cohort of children with OI in North America. Purposive sampling was used to recruit 12 children with OI over three cycles. Nine clinicians oversaw the development process, which involved determining the relevance of current Sisom symptoms, vignettes, and avatars, as well as generating new Sisom OI components. Data, including field notes, transcribed audio-recordings, and drawings, were deductively analyzed using content analysis techniques. Guided by the following framework, data pertaining to symptoms, vignettes, and avatars were coded into five categories: a) Relevant; b) Irrelevant; c) To modify; d) To add; e) Unsure. Overall, 70.8% of Sisom symptoms were deemed relevant for inclusion, with 49.4% directly incorporated, and 21.3% incorporated with changes to syntax, and/or vignette, and/or location. Three additions were made to the ‘Avatar’ island. This allowed children to celebrate their uniqueness: ‘Makes you feel like you’re not like everybody else.’ One new island, ‘About Me’, was added to capture children’s worldviews. One new sub-island, ‘Getting Around’, was added to reflect accessibility issues. These issues were related to the children’s independence, their social lives, as well as the perceptions of others. In being consulted as experts throughout the co-creation of the Sisom OI paper prototype, children coded the Sisom symptoms and provided sound rationales for their chosen codes. In rationalizing their codes, all children shared personal stories about themselves and their relationships, insights about their OI, and an understanding of the strengths and challenges they experience on a day-to-day basis. The child’s perspective on their health is a basic right, and allowing it to be heard is the next frontier in the care of children with genetic diseases. Sisom OI, a methodological breakthrough within OI research, will offer clinicians an innovative and child-centered approach to capture this neglected perspective. It will provide a tool for the delivery of health care in the center that established the worldwide standard of care for children with OI.

Keywords: child health, interactive computerized communication tool, participatory approach, symptom management

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Authors: Ezinne K. Okoro, Takahiko Katoh, Yoko Kawamura, Stanley C. Meribe

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HIV infection in children is largely as a result of vertical transmission (mother to child transmission [MTCT]). Thus, elimination of mother to child transmission of HIV/AIDS is critical in eliminating HIV infection in children. In Nigeria, drawbacks such as; limited pediatric screening, limited human capital, insufficient advocacy and poor understanding of ART guidelines, have impacted efforts at combating the disease, even as treatment services are free. Prevention of Mother to Child Transmission (PMTCT) program relies on health workers who not only counsel pregnant women on first contact but can competently provide HIV-positive pregnant women with accurate information about the PMTCT program such as feeding techniques and drug adherence. In developing regions like Nigeria where health care delivery faces a lot of drawbacks, it becomes paramount to address these issues of poor PMTCT coverage by conducting a baseline assessment of the knowledge, practices and perceptions related to HIV prevention amongst healthcare workers in Nigeria. A descriptive cross-sectional study was conducted amongst 250 health workers currently employed in health facilities in Abuja, Nigeria where PMTCT services were offered with the capacity to carry out early infant diagnosis testing (EID). Data was collected using a self-administered, pretested, structured questionnaire. This study showed that the knowledge of PMTCT of HIV was poor (30%) among healthcare workers who offer this service day-to-day to pregnant women. When PMTCT practices were analyzed in keeping with National PMTCT guidelines, over 61% of the respondents reported observing standard practices and the majority (58%) had good attitudes towards caring for patients with HIV/AIDS. Although 61% of the respondents reported being satisfied with the quality of service being rendered, 63% reported not being satisfied with their level of knowledge. Predictors of good knowledge were job designation and level of educational attainment. Health workers who were more satisfied with their working conditions and those who had worked for a longer time in the PMTCT service were more likely to observe standard PMTCT practices. With over 62% of the healthcare workers suggesting that more training would improve the quality of service being rendered, this is a strong pointer to stakeholders to consider a ‘healthcare worker-oriented approach’ when planning and conducting PMTCT training for healthcare workers. This in turn will increase pediatric ARV coverage, the knowledge and effectiveness of the healthcare workers in carrying out appropriate PMTCT interventions and culminating in the reduction/elimination of HIV transmission to newborns.

Keywords: attitudes, HIV/AIDS, healthcare workers, knowledge, mother to child transmission, Nigeria, perceptions

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Authors: Nagwa Abouserie Soliman

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The Victorian era, which started with the reign of Queen Victoria from June 1837 to January 1901, could be considered as one of the most significant eras that had a crucial impact which formed contemporary British life despite the fact that with the rise of the British empire many negative aspects surfaced, namelysocial inequalities such as class differences, child labor, population increase and poverty due to the industrial revolution. Charles Dickens was one of the most prominent writers of the Victorian era who perceived the hypocrisy of the Victorian mores. The appropriate researchstyle that was chosen for this literary analysis is a qualitative research method in which the researcher used the conceptual approach to analyse theDickensian characterisation andwriting style through diction, narrative voice, and images. The aim of this paper is to argue that Charles Dickens inGreat Expectations (1861) was highly satirical of the Victorian mores, as he uses a lot of sharp irony-to satirize various Victorian traditions such as class divisions, the justice system, the poor working class, and the upper-class snobbery that he thought are inhumane and unjust.

Keywords: victorian, child labour, poverty, class division, snobbery

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Authors: Joanna Estkowska

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The Sensory Integration Method is aimed primarily at children with learning disabilities. It can also be used as a complementary method in treatment of children with cerebral palsy, autistic, mentally handicapped, blind and deaf. Autism is holistic development disorder that manifests itself in the specific functioning of a child. The most characteristic are: disorders in communication, difficulties in social relations, rigid patterns of behavior and impairment in sensory processing. In addition to these disorders may occur abnormal intellectual development, attention deficit disorders, perceptual disorders and others. This study was focused on the application sensory integration techniques in science education of autistic students. The lack of proper sensory integration causes problems with complicated processes such as motor coordination, movement planning, visual or auditory perception, speech, writing, reading or counting. Good functioning and cooperation of proprioceptive, tactile and vestibular sense affect the child’s mastery of skills that require coordination of both sides of the body and synchronization of the cerebral hemispheres. These include, for example, all sports activities, precise manual skills such writing, as well as, reading and counting skills. All this takes place in stages. Achieving skills from the first stage determines the development of fitness from the next level. Any deficit in the scope of the first three stages can affect the development of new skills. This ultimately reflects on the achievements at school and in further professional and personal life. After careful analysis symptoms from the emotional and social spheres appear to be secondary to deficits of sensory integration. During our research, the students gained knowledge and skills in the classroom of experience by learning biology, chemistry and physics with application sensory integration techniques. Sensory integration therapy aims to teach the child an adequate response to stimuli coming to him from both the outside world and the body. Thanks to properly selected exercises, a child can improve perception and interpretation skills, motor skills, coordination of movements, attention and concentration or self-awareness, as well as social and emotional functioning.

Keywords: autism spectrum disorder, science education, sensory integration, special educational needs

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Authors: Lola Vivour-Adeniyi, Oluwatoyosi Abikoye

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Domestic and sexual violence inflicts profound trauma on individuals, with particularly distressing consequences for young people when experienced in familiar settings such as homes, schools, religious institutions, or with trusted individuals. Research conducted at the Lagos State Domestic and Sexual Violence Agency (DSVA) from 2015 to 2023 reveals a disconcerting trend where young people often misconstrue abusive actions as tolerable, partially acceptable, or merely morally wrong due to a lack of awareness about their rights as guaranteed under the Lagos State Child’s Right Law. This paper delves into the grassroots initiatives of the Lagos State DSVA, specifically the Kings and Queens Club, designed to combat domestic and sexual violence (DSV) among teens. The club focuses on raising awareness and ensuring access to support services. The paper provides a concise analysis of the club's impact, contextualizing Lagos State's efforts to eradicate DSV for future generations. Additionally, it comprehensively examines the legal rights of children and young persons as outlined in the Lagos State Child’s Right Law 2007, Protection Against Domestic Violence Law 2007, Criminal Law 2011, and Domestic and Sexual Violence Agency Law 2021. In conclusion, this paper aims to inform policy and community development initiatives, emphasizing the effectiveness of school-based approaches in creating a sustainably equitable society for children and young persons.

Keywords: school-based approach, domestic and sexual violence, Lagos state child’s rights law, Lagos state DSVA

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Authors: Victor William Harris

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Objective. This study examined the impact of the Positive Behavioral Management Skills (PBMS) online educational program on participants (n = 624) in a Southeastern region of the United States. The PBMS program incorporates established positive psychology behavioral management principles with new research-based practices designed to promote healthy and satisfying relationships between adults and children while constructively managing and preventing problematic behavior. Additionally, the PBMS program assists parents and teachers in recognizing the motivations behind a wide range of misbehaviors. The program also offers to forewarn some of the most common mistakes (or “parent traps”) in child behavioral management and describes how they can be avoided. It also describes how to recognize and capitalize on “teachable moments,” which are indispensable in the developmental process. Design. A retrospective-pre-test-then-post-test design was used to reduce response shift bias when assessing knowledge and skill intervention outcomes for twenty-two behavioral management variables. Results. The PBMS program was shown to be effective for increasing knowledge and skills related to managing misbehavior while reinforcing interpersonal relationships and fostering a sense of responsibility and capability within the child. Large standardized mean effect size changes from before to after program intervention was documented for PBMS participants on all twenty-two variables studied. Conclusion. The PBMS program showed initial positive outcomes to assist participants in the sample studied to increase their knowledge and skills in managing child behavior successfully. Implications for parents, educators and practitioners are discussed.

Keywords: behavioral management, discipline, parent education, positive parenting, positive psychology-parenting

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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

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