Search results for: invisible disabilities

Authors: Elena Kokkoni, Prasanna Kannappan, Ashkan Zehfroosh, Effrosyni Mavroudi, Kristina Strother-Garcia, James C. Galloway, Jeffrey Heinz, Rene Vidal, Herbert G. Tanner

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Early immobility affects the motor, cognitive, and social development. Current pediatric rehabilitation lacks the technology that will provide the dosage needed to promote mobility for young children at risk. The addition of socially assistive robots in early interventions may help increase the mobility dosage. The aim of this study is to examine the feasibility of an early intervention paradigm where non-walking infants experience independent mobility while socially interacting with robots. A dynamic environment is developed where both the child and the robot interact and learn from each other. The environment involves: 1) a range of physical activities that are goal-oriented, age-appropriate, and ability-matched for the child to perform, 2) the automatic functions that perceive the child’s actions through novel activity recognition algorithms, and decide appropriate actions for the robot, and 3) a networked visual data acquisition system that enables real-time assessment and provides the means to connect child behavior with robot decision-making in real-time. The environment was tested by bringing a two-year old boy with Down syndrome for eight sessions. The child presented delays throughout his motor development with the current being on the acquisition of walking. During the sessions, the child performed physical activities that required complex motor actions (e.g. climbing an inclined platform and/or staircase). During these activities, a (wheeled or humanoid) robot was either performing the action or was at its end point 'signaling' for interaction. From these sessions, information was gathered to develop algorithms to automate the perception of activities which the robot bases its actions on. A Markov Decision Process (MDP) is used to model the intentions of the child. A 'smoothing' technique is used to help identify the model’s parameters which are a critical step when dealing with small data sets such in this paradigm. The child engaged in all activities and socially interacted with the robot across sessions. With time, the child’s mobility was increased, and the frequency and duration of complex and independent motor actions were also increased (e.g. taking independent steps). Simulation results on the combination of the MDP and smoothing support the use of this model in human-robot interaction. Smoothing facilitates learning MDP parameters from small data sets. This paradigm is feasible and provides an insight on how social interaction may elicit mobility actions suggesting a new early intervention paradigm for very young children with motor disabilities. Acknowledgment: This work has been supported by NIH under grant #5R01HD87133.

Keywords: activity recognition, human-robot interaction, machine learning, pediatric rehabilitation

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Authors: Jochen Nelles, Susanne Kohns, Julia Spies, Friederike Schmitz-Buhl, Roland Thietje, Christopher Brandl, Alexander Mertens, Christopher M. Schlick

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Industrial robots as part of highly automated manufacturing are recently developed to cooperative (light-weight) robots. This offers the opportunity of using them as assistance robots and to improve the participation in professional life of disabled or handicapped people such as tetraplegics. Robots under development are located within a cooperation area together with the working person at the same workplace. This cooperation area is an area where the robot and the working person can perform tasks at the same time. Thus, working people and robots are operating in the immediate proximity. Considering the physical restrictions and the limited mobility of tetraplegics, a hands-free robot control could be an appropriate approach for a cooperative assistance robot. To meet these requirements, the research project MeRoSy (human-robot synergy) develops methods for cooperative assistance robots based on the measurement of head movements of the working person. One research objective is to improve the participation in professional life of people with disabilities and, in particular, mobility impaired persons (e.g. wheelchair users or tetraplegics), whose participation in a self-determined working life is denied. This raises the research question, how a human-robot cooperation workplace can be designed for hands-free robot control. Here, the example of a library scenario is demonstrated. In this paper, an empirical study that focuses on the impact of head movement related stress is presented. 12 test subjects with tetraplegia participated in the study. Tetraplegia also known as quadriplegia is the worst type of spinal cord injury. In the experiment, three various basic head movements were examined. Data of the head posture were collected by a motion capture system; muscle activity was measured via surface electromyography and the subjective mental stress was assessed via a mental effort questionnaire. The muscle activity was measured for the sternocleidomastoid (SCM), the upper trapezius (UT) or trapezius pars descendens, and the splenius capitis (SPL) muscle. For this purpose, six non-invasive surface electromyography sensors were mounted on the head and neck area. An analysis of variance shows differentiated muscular strains depending on the type of head movement. Systematically investigating the influence of different basic head movements on the resulting strain is an important issue to relate the research results to other scenarios. At the end of this paper, a conclusion will be drawn and an outlook of future work will be presented.

Keywords: assistance robot, human-robot interaction, motion capture, stress-strain-concept, surface electromyography, tetraplegia

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Authors: Milena Trojanowska

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Disability is a phenomenon for which meanings and definitions have evolved over the decades. This became the trigger to start a project to answer the question of what disability constitutes in the course of an incurable chronic disease. The chosen research group are people living with multiple sclerosis.The contextual phase of the research was participant observation at the Polish Multiple Sclerosis Society, the largest NGO in Poland supporting people living with MS and their relatives. The research techniques used in the project are (in order of implementation): group interviews with people living with MS and their relatives, narrative interviews, asynchronous technique, participant observation during events organised for people living with MS and their relatives.The researcher is currently conducting follow-up interviews, as inaccuracies in the respondents' narratives were identified during the data analysis. Interviews and supplementary research techniques were used over the four years of the research, and the researcher also benefited from experience gained from 12 years of working with NGOs (diaries, notes). The research was carried out in Poland with the participation of people living in this country only.The research has been based on grounded theory methodology in a constructivist perspectivedeveloped by Kathy Charmaz. The goal was to follow the idea that research must be reliable, original, and useful. The aim was to construct an interpretive theory that assumes temporality and the processualityof social life. TheAtlas.ti software was used to collect research material and analyse it. It is a program from the CAQDAS(Computer-Assisted Qualitative Data Analysis Software) group.Several key factors influencing the construction of a disability identity by people living with multiple sclerosis was identified:-course of interaction with significant relatives,- the expectation of identification with disability (expressed by close relatives),- economic profitability (pension, allowances),- institutional advantages (e.g. parking card),- independence and autonomy (not equated with physical condition, but access to adapted infrastructure and resources to support daily functioning),- the way a person with MS construes the meaning of disability,- physical and mental state,- medical diagnosis of illness.In addition, it has been shown that making an assumption about the experience of disability in the course of MS is a form of cognitive reductionism leading to further phenomenon such as: the expectation of the person with MS to construct a social identity as a person with a disability (e.g. giving up work), the occurrence of institutional inequalities. It can also be a determinant of the choice of a life strategy that limits social and individual functioning, even if this necessity is not influenced by the person's physical or psychological condition.The results of the research are important for the development of knowledge about the phenomenon of disability. It indicates the contextuality and complexity of the disability phenomenon, which in the light of the research is a set of different phenomenon of heterogeneous nature and multifaceted causality. This knowledge can also be useful for institutions and organisations in the non-governmental sector supporting people with disabilities and people living with multiple sclerosis.

Keywords: disability, multiple sclerosis, grounded theory, poland

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Authors: Noel Smith

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To achieve professional registration, UK social workers need to complete a programme of education and training which meets standards set down by central government. When it comes to practice, social work in local authorities must fulfil requirements of national legislation but there is considerable local variation in the organisation and delivery of services. This presentation discusses the on-going reform of social work education by central government in the context of research of social work services in a local authority. In doing so it highlights that the ‘direction of travel’ of the national reform of social work education seems at odds with the trajectory of development of local social work services. In terms of education reform, the presentation cites key government initiatives including the knowledge and skills requirements which have been published separately for, respectively, child and family social work and adult social work. Also relevant is the Government’s new ‘teaching partnership’ pilot which focuses exclusively on social work in local government, in isolation from social work in NGOs. In terms of research, the presentation discusses two studies undertaken by Professor Smith in Suffolk County Council, a local authority in the east of England. The first is an equality impact analysis of the introduction of a new model for the delivery of adult and community services in Suffolk. This is based on qualitative research with local government representatives and NGOs involved in social work with older people and people with disabilities. The second study is an on-going, mixed method evaluation of the introduction of a new model of social care for children and young people in Suffolk. This new model is based on the international ‘Signs of Safety’ approach, which is applied in this model to a wide range of services from early intervention to child protection. While both studies are localised, the service models they examine are good illustrations of the way services are developing nationally. Analysis of these studies suggest that, if services continue to develop as they currently are, then social workers will require particular skills which are not be adequately addressed in the Government’s plans for social work education. Two issues arise. First, education reform concentrates on social work within local government while increasingly local authorities are outsourcing service provision to NGOs, expecting greater community involvement in providing care, and integrating social care with health care services. Second, education reform focuses on the different skills required for working with older and disabled adults and working with children and families, to the point where potentially the profession would be fragmented into two different classes of social worker. In contrast, the development of adult and children’s services in local authorities re-asserts the importance of common social work skills relating to personalisation, prevention and community development. The presentation highlights the importance for social work education in the UK to be forward looking, in terms of the changing design of service delivery, and outward looking, in terms of lessons to be drawn from international social work.

Keywords: adult social work, children and families social work, European social work, social work education

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Authors: Stephan Treuke

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The paper analyses the neighbourhood effects on the economic mobility of the inhabitants of three segregated communities of Salvador (Brazil), in other words, the socio-economic advantages and disadvantages affecting the lives of poor people due to their embeddedness in specific socio-residential contexts. Recent studies performed in Brazilian metropolis have concentrated on the structural dimensions of negative externalities in order to explain neighbourhood-level variations in a field of different phenomena (delinquency, violence, access to the labour market and education) in spatial isolated and socially homogeneous slum areas (favelas). However, major disagreement remains whether the contiguity between residents of poor neighbourhoods and higher-class condominio-dwellers provides structures of opportunities or whether it fosters socio-spatial stigmatization. Based on a set of interviews, investigating the variability of interpersonal networks and their activation in the struggle for economic inclusion, the study confirms that the proximity of Nordeste de Amaralina to middle-/upper-class communities affects positively the access to labour opportunities. Nevertheless, residential stigmatization, as well as structures of social segmentation, annihilate these potentials. The lack of exposition to individuals and groups extrapolating from the favela’s social, educational and cultural context restricts the structures of opportunities to local level. Therefore, residents´ interpersonal networks reveal a high degree of redundancy and localism, based on bonding ties connecting family and neighbourhood members. The resilience of segregational structures in Plataforma contributes to the naturalization of social distance patters. It’s embeddedness in a socially homogeneous residential area (Subúrbio Ferroviário), growing informally and beyond official urban politics, encourages the construction of isotopic patterns of sociability, sharing the same values, social preferences, perspectives and behaviour models. Whereas it’s spatial isolation correlates with the scarcity of economic opportunities, the social heterogeneity of Fazenda Grande II interviewees and the socialising effects of public institutions mitigate the negative repercussions of segregation. The networks’ composition admits a higher degree of heterophilia and a greater proportion of bridging ties accounting for the access to broader information actives and facilitating economic mobility. The variability observed within the three different scenarios urges to reflect about the responsability of urban politics when it comes to the prevention or consolidation of the social segregation process in Salvador. Instead of promoting the local development of the favela Plataforma, public housing programs priorize technocratic habitational solutions without providing the residents’ socio-economic integration. The impact of negative externalities related to the homogeneously poor neighbourhood is potencialized in peripheral areas, turning its’ inhabitants socially invisible, thus being isolated from other social groups. The example of Nordeste de Amaralina portrays the failing interest of urban politics to bridge the social distances structuring the brazilian society’s rigid stratification model, founded on mecanisms of segmentation (unequal access to labour market and education system, public transport, social security and law protection) and generating permanent conflicts between the two socioeconomically distant groups living in geographic contiguity. Finally, in the case of Fazenda Grande II, the public investments in both housing projects and complementary infrastructure (e.g. schools, hospitals, community center, police stations, recreation areas) contributes to the residents’ socio-economic inclusion.

Keywords: economic mobility, neighborhood effects, Salvador, segregation

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Authors: Anita Burgund Isakov, Cristina Nunes, Nevenka Zegarac, Ana Antunes

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Contemporary societies are facing a noticeable shift in family realities, urging to need for the development of new policies, service, and practice orientation that has application across different sectors who serves families with children across the world. A challenge for the field of family support is diversity in conceptual assumptions and epistemological frameworks. Since many disciplines and professionals are working in the family support field, there is a need to map and gain a deeper insight into the skills for the workforce in this field. Under the umbrella of the COST action 'The Pan-European Family Support Research Network: A bottom-up, evidence-based and multidisciplinary approach', a review of the current state of knowledge published from the European studies on family support workforce skills standards is performed. Contributing to the aim of mapping and catalogization of skills standards, key stages of literature review were identified in order to extract and systematize the data. We have considered inclusion and exclusion criteria for this literature review. Inclusion criteria were: a) families living with their children and families using family support services; different methodological approaches were included: qualitative, quantitative, mix method, literature review and theoretical reflections various topic appeared in journals like working with families that are facing difficulties or culturally sensitive practice and relationship-based approaches; b) the dates ranged from 1995 to February 2020. Articles published prior to 1995 were excluded due to modernization of family support services across world; c) the sources and languages included peer-reviewed articles published in scientific journals in English. Six databases were searched and once we have extracted all the relevant papers (n=29), we searched the list of reference in each and we found 11 additional papers. In total 40 papers have been extracted from six data basis. Findings could be summarized in: 1) only five countries emerged with production in the specific topic, that is, workforce skills to family support (UK, USA, Canada, Australia, and Spain), 2) studies revealed that diverse skills support family topics were investigated, namely the professional support skills to help families of neglected/abused children or in care; the professional support skills to help families with children who suffer from behavioral problems and families with children with disabilities; and the professional support skills to help minority ethnic parents, 3) social workers were the main targeted professionals' studies albeit other child protection workers were studied too, 4) the workforce skills to family support were grouped in three topics: the qualities of the professionals (attitudes and attributes); technical skills, and specific knowledge. The framework of analyses, literature strategy and findings with study limitations will be further discussed. As an implication, this study contributes and advocates for the structuring of a common base for cross-sectoral and interdisciplinary qualification standards for the family support workforce.

Keywords: family support, skill standards, systemic review, workforce

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Authors: Lamia Bouzgarrou, Amira Omrane, Leila Mrabet, Taoufik Khalfallah

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Background and aims: School accidents are one of the leading causes of morbidity and mortality among pupils and students. Indeed, they may induce an elevated number of lost school days, heavy emotional and physical disabilities, and financial costs on the victims and their families. This study aims to evaluate the annual incidence of school accidents in the central Tunisian governorate of Mahdia and to identify the epidemiological profile of victims and risk factors of these accidents. Methods: A retrospective study was conducted over the period of 5 school years, focusing on school accidents that occurred in public educational institutions (primary, basic, secondary and university) in the governorate of Mahdia (area = 2 966 km² and number of inhabitants in 2014 = 410 812). All accidents declared near the only official insurance of this type of injuries (MASU: Mutual School and University Accidents), and initially taken in charge at the University Hospital of Mahdia were included. Data was collected from the MASU reporting forms and the medical records of emergency and other specialized hospital departments. Results: With 3248 identified victims, the annual incidence of school accidents was equal to 0.69 per 100 pupils and students per year. The average age of victims was 14.51 ± 0.059 years and the sex ratio was 1.58. Pupils aged between 12 and 15 years, were concerned by 46.7% of the identified accidents. The practice of sports was the most relevant circumstances of these accidents (76.2 %). In 56.58 % of cases, falls were the leading mechanism. Bruises and fractures were the most frequent lesions (32.43 % and 30.51 %). Serious school accidents were noted in 28% of cases with hospitalization in 2.27 % of them. The average lost school days, was 12.23±1.73 days. Accidents occurring during sports or leisure activities were significantly more serious (p= 0.021). Furthermore, the frequency of hospitalization was significantly higher among boys (2.81% vs. 1.43%; p= 0.035), students ≤11 years (p= 0.008), and following crush trauma (p= 0.000). In addition, the surgical interventions were statistically more frequent among male victims (p=0.00), accidents occurring during physical education sessions (p=0.000); those associated to falls (p=0.000) and to crushes mechanisms (p=0.002), and injuries affecting lower limbs (p=0.000). Following this Multi-varied analysis concluded that the severity of school accident is correlated to the activity practiced during the trauma and the geographical location of the school. Conclusion: Children and adolescents are one of the most vulnerable groups against incidents with the risk of permanent disability, mainly related to the perturbation of the growth process and physiological limitations. Our five-year study, objectified a real elevate incidence of school accident among children and adolescents, with a considerable rate of severe injuries. In any community, the promotion of adolescents and children’s health is an important indicator of the public health level. Thus, it’s important to develop a multidisciplinary prevention strategy of school accident, based on safety and security rules and adapted to the specificity of our context.

Keywords: children and adolescents, children health, injuries and disability, school accident

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

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This study examines the dynamics of communication among researchers and participants who have various levels of hearing, use multiple languages, have various disabilities, and who come from different social strata. This qualitative methodological study focuses on the strategies employed in an ethnographic research study examining the communication choices of six sets of parents who have Deaf-Disabled children. The participating families varied in their communication strategies and preferences including the use of American Sign Language (ASL), visual-gestural communication, multiple spoken languages, and pidgin forms of each of these. The research team consisted of two undergraduate students proficient in ASL and a Deaf principal investigator (PI) who uses ASL and speech as his main modes of communication. A third Hard-of-Hearing undergraduate student fluent in ASL served as an objective facilitator of the data analysis. The team created reflexive journals by audio recording, free writing, and responding to team-generated prompts. They discussed interactions between the members of the research team, their evolving relationships, and various social and linguistic power differentials. The researchers reflected on communication during data collection, their experiences with one another, and their experiences with the participating families. Reflexive journals totaled over 150 pages. The outside research assistant reviewed the journals and developed follow up open-ended questions and prods to further enrich the data. The PI and outside research assistant used NVivo qualitative research software to conduct open inductive coding of the data. They chunked the data individually into broad categories through multiple readings and recognized recurring concepts. They compared their categories, discussed them, and decided which they would develop. The researchers continued to read, reduce, and define the categories until they were able to develop themes from the data. The research team found that the various communication backgrounds and skills present greatly influenced the dynamics between the members of the research team and with the participants of the study. Specifically, the following themes emerged: (1) students as communication facilitators and interpreters as barriers to natural interaction, (2) varied language use simultaneously complicated and enriched data collection, and (3) ASL proficiency and professional position resulted in a social hierarchy among researchers and participants. In the discussion, the researchers reflected on their backgrounds and internal biases of analyzing the data found and how social norms or expectations affected the perceptions of the researchers in writing their journals. Through this study, the research team found that communication and language skills require significant consideration when working with multiple and complex communication modes. The researchers had to continually assess and adjust their data collection methods to meet the communication needs of the team members and participants. In doing so, the researchers aimed to create an accessible research setting that yielded rich data but learned that this often required compromises from one or more of the research constituents.

Keywords: American Sign Language, complex communication, deaf-disabled, methodology

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Authors: Mariia A. Parfenenko, Ilya S. Dantsev, Sergei V. Bochenkov, Natalia V. Vinogradova, Olga S. Groznova, Victoria Yu. Voinova

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Introduction: Autism is the most common neurodevelopmental disorder. Autism is characterized by difficulties in social interaction and adherence to stereotypic behavioral patterns and frequently co-occurs with epilepsy, intellectual disabilities, connective tissue disorders, and other conditions. CHD8 codes for chromodomain-helicase-DNA-binding protein 8 - a chromatin remodeler that regulates cellular proliferation and neurodevelopment in embryogenesis. CHD8 is one of the genes most frequently involved in autism. Patients and methods: 2 unrelated male patients, P3 and P12, aged 3 and 12 years old, underwent whole genome sequencing, which determined that they both had different likely pathogenic variants, both previously undescribed in literature. Sanger sequencing later determined that P12 inherited the variant from his affected mother. Results: P3 and P12 presented with autism, a developmental delay, ataxia, sleep disorders, overgrowth, and macrocephaly, as well as other clinical features typically present in patients with causative variants in CHD8. The mother of P12 also has autistic traits, as well as ataxia, hypotonia, sleep disorders, and other symptoms. However, P3 and P12 also have different cardiac abnormalities. P3 had signs of a repolarization disorder: a flattened T wave in the III and aVF derivations and a negative T wave in the V1-V2 derivations. He also had structural valve anomalies with associated regurgitation, local contractility impairment of the left ventricular, and diastolic dysfunction of the right ventricle. Meanwhile, P12 had Wolff-Parkinson-White syndrome and underwent radiofrequency ablation at the age of 2 years. At the time of observation, P12 had mild sinus arrhythmia and an incomplete right bundle branch block, as well as arterial hypertension. Discussion: Cardiac abnormalities were not previously reported in patients with causative variants in CHD8. The underlying mechanism for the formation of those abnormalities is currently unknown. However, the two hypotheses are either a disordered interaction with CHD7 – another chromodomain remodeler known to be directly involved in the cardiophenotype of CHARGE syndrome – a rare condition characterized by coloboma, heart defects and growth abnormalities, or the disrupted functioning of CHD8 as an A-Kinase Anchoring Protein, which are known to modulate cardiac function. Conclusion: We observed 2 unrelated autistic males with likely pathogenic variants in CHD8 that presented with typical symptoms of CHD8-related neurodevelopmental disorder, as well as cardiac abnormalities. Cardiac abnormalities have, until now, been considered uncharacteristic for patients with causative variants in CHD8. Further accumulation of data, including experimental evidence of the involvement of CHD8 in heart formation, will elucidate the mechanism underlying the cardiophenotype of those patients. Acknowledgements: Molecular genetic testing of the patients was made possible by the Charity Fund for medical and social genetic aid projects «Life Genome.»

Keywords: autism spectrum disorders, chromodomain-helicase-DNA-binding protein 8, neurodevelopmental disorder, cardio phenotype

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Authors: Mathula Thangarajh

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Duchenne muscular dystrophy (DMD) is a severe form of X-linked muscular dystrophy caused by mutations in the dystrophin gene resulting in progressive skeletal muscle weakness. Boys with DMD also have significant cognitive disabilities. The intelligence quotient of boys with DMD, compared to peers, is approximately one standard deviation below average. Detailed neuropsychological testing has demonstrated that boys with DMD have a global developmental impairment, with verbal memory and visuospatial skills most significantly affected. Furthermore, the total brain volume and gray matter volume are lower in children with DMD compared to age-matched controls. These results are suggestive of a significant structural and functional compromise to the developing brain as a result of absent dystrophin protein expression. There is also some genetic evidence to suggest that mutations in the 3’ end of the DMD gene are associated with more severe neurocognitive problems. Our working hypothesis is that (i) boys with DMD do not make gains in neurodevelopmental skills compared to typically developing children and (ii) women carriers of DMD mutations may have subclinical cognitive deficits. We also hypothesize that there may be an intergenerational vulnerability of cognition, with boys of DMD-carrier mothers being more affected cognitively than boys of non-DMD-carrier mothers. The objectives of this study are: 1. Assess the neurodevelopment in boys with DMD at 4-time points and perform baseline neuroradiological assessment, 2. Assess cognition in biological mothers of DMD participants at baseline, 3. Assess possible correlation between DMD mutation and cognitive measures. This study also explores functional brain abnormalities in people with DMD by exploring how regional and global connectivity of the brain underlies executive function deficits in DMD. Such research can contribute to a better holistic understanding of the cognition alterations due to DMD and could potentially allow clinicians to create better-tailored treatment plans for the DMD population. There are four study visits for each participant (baseline, 2-4 weeks, 1 year, 18 months). At each visit, the participant completes the NIH Toolbox Cognition Battery, a validated psychometric measure that is recommended by NIH Common Data Elements for use in DMD. Visits 1, 3, and 4 also involve the administration of the BRIEF-2, ABAS-3, PROMIS/NeuroQoL, PedsQL Neuromuscular module 3.0, Draw a Clock Test, and an optional fMRI scan with the N-back matching task. We expect to enroll 52 children with DMD, 52 mothers of children with DMD, and 30 healthy control boys. This study began in 2020 during the height of the COVID-19 pandemic. Due to this, there were subsequent delays in recruitment because of travel restrictions. However, we have persevered and continued to recruit new participants for the study. We partnered with the Muscular Dystrophy Association (MDA) and helped advertise the study to interested families. Since then, we have had families from across the country contact us about their interest in the study. We plan to continue to enroll a diverse population of DMD participants to contribute toward a better understanding of Duchenne Muscular Dystrophy.

Keywords: neurology, Duchenne muscular dystrophy, muscular dystrophy, cognition, neurodevelopment, x-linked disorder, DMD, DMD gene

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Authors: A. Kourou, A. Ioakeimidou, S. Hadjiefthymiades, V. Abramea

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During the last decades, the task of engaging governments, communities and citizens to reduce risk and vulnerability of the populations has made variable progress. Experience has demonstrated that lack of awareness, education and preparedness may result in significant material and other losses both on the onset of the disaster. Schools play a vital role in the community and are important elements of values and culture of the society. A proper school education not only teaches children, but also is a key factor in the promotion of a safety culture into the wider community. In Greece School Earthquake Safety Initiative has been undertaken by Earthquake Planning and Protection Ogranization with specific actions (seminars, lectures, guidelines, educational material, campaigns, national or EU projects, drills etc.). The objective of this initiative is to develop disaster-resilient school communities through awareness, self-help, cooperation and education. School preparedness requires the participation of Principals, teachers, students, parents, and competent authorities. Preparation and earthquake readiness involves: a) learning what should be done before, during, and after earthquake; b) doing or preparing to do these things now, before the next earthquake; and c) developing teachers’ and students’ skills to cope efficiently in case of an earthquake. In the above given framework this paper presents the results of a survey aimed to identify the level of education and preparedness of school community in Greece. More specifically, the survey questionnaire investigates issues regarding earthquake protection actions, appropriate attitudes and behaviors during an earthquake and existence of contingency plans at elementary and secondary schools. The questionnaires were administered to Principals and teachers from different regions of the country that attend the EPPO national training project 'Earthquake Safety at Schools'. A closed-form questionnaire was developed for the survey, which contained questions regarding the following: a) knowledge of self protective actions b) existence of emergency planning at home and c) existence of emergency planning at school (hazard mitigation actions, evacuation plan, and performance of drills). Survey results revealed that a high percentage of teachers have taken the appropriate preparedness measures concerning non-structural hazards at schools, emergency school plan and simulation drills every year. In order to improve the action-planning for ongoing school disaster risk reduction, the implementation of earthquake drills, the involvement of students with disabilities and the evaluation of school emergency plans, EPPO participates in E-PreS project. The main objective of this project is to create smart tools which define, simulate and evaluate all hazards emergency steps customized to the unique district and school. The project comes up with a holistic methodology using real-time evaluation involving different categories of actors, districts, steps and metrics. The project is supported by EU Civil Protection Financial Instrument with a duration of two years. Coordinator is the Kapodistrian University of Athens and partners are from four countries; Greece, Italy, Romania and Bulgaria.

Keywords: drills, earthquake, emergency plans, E-PreS project

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Authors: Arti Singh, Carolyn Jenkins, Oyedunni S. Arulogun, Mayowa O. Owolabi, Fred S. Sarfo, Bruce Ovbiagele, Enzinne Sylvia

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Background: Stroke, the leading cause of adult-onset disability and the second leading cause of death, is a major public health concern particularly pertinent in Sub-Saharan Africa (SSA), where nearly 80% of all global stroke mortalities occur. The Stroke Investigative Research and Education Network (SIREN) seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other non communicable diseases in SSA. One of the first steps to address this goal was to effectively engage the communities that suffer the high burden of disease in SSA. This study describes how the SIREN project engaged six sites in Ghana and Nigeria over the past three years, describing the community engagement activities that have arisen since inception. Aim: The aim of community engagement (CE) within SIREN is to elucidate information about knowledge, attitudes, beliefs, and practices (KABP) about stroke and its risk factors from individuals of African ancestry in SSA, and to educate the community about stroke and ways to decrease disabilities and deaths from stroke using socioculturally appropriate messaging and messengers. Methods: Community Advisory Board (CABs), Focus Group Discussions (FGDs) and community outreach programs. Results: 27 FGDs with 168 participants including community heads, religious leaders, health professionals and individuals with stroke among others, were conducted, and over 60 CE outreaches have been conducted within the SIREN performance sites. Over 5,900 individuals have received education on cardiovascular risk factors and about 5,000 have been screened for cardiovascular risk factors during the outreaches. FGDs and outreach programs indicate that knowledge of stroke, as well as risk factors and follow-up evidence-based care is limited and often late. Other findings include: 1) Most recognize hypertension as a major risk factor for stroke. 2) About 50% report that stroke is hereditary and about 20% do not know organs affected by stroke. 3) More than 95% willing to participate in genetic testing research and about 85% willing to pay for testing and recommend the test to others. 4) Almost all indicated that genetic testing could help health providers better treat stroke and help scientists better understand the causes of stroke. The CABs provided stakeholder input into SIREN activities and facilitated collaborations among investigators, community members and stakeholders. Conclusion: The CE core within SIREN is a first-of-its kind public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders in SSA and has implications as a model for assessment in other high-stroke risk populations. SIREN’s CE program uses best practices to build capacity for community-engaged research, accelerate integration of research findings into practice and strengthen dynamic community-academic partnerships within our communities. CE has had several major successes over the past three years including our multi-site collaboration examining the KABP about stroke (symptoms, risk factors, burden) and genetic testing across SSA.

Keywords: community advisory board, community engagement, focus groups, outreach, SSA, stroke

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Authors: Léa Chawki, Émilie Cappe

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Context: Nowadays, supporting parents of children with autism spectrum disorder (ASD) and helping them adjust to their child’s condition represents a core clinical and scientific necessity and is encouraged by the French National Strategy for Autism (2018). In France, ASD remains a challenging condition, causing distress, segregation and social stigma to concerned family members concerned by this handicap. The literature highlights that neurodevelopmental disorders in children, such as ASD, influence parental well-being. This impact could be different according to parents’ culture and the child’s particular disorder manifestation, such as developmental coordination disorder (DCC), for instance. Objectives: This present study aims to explore parental stress, anxiety and depressive symptoms, as well as the quality of life in parents of children with ASD or DCD, as well as the explicit individual, psychosocial and cultural factors of parental well-being. Methods: Participants will be recruited through diagnostic centers, child and specialized adolescent units, and organizations representing families with ASD and DCD. Our sample will include five groups of 150 parents: four groups of parents having children with ASD – one living in France, one in the US, one in Canada and the other in Lebanon – and one group of French parents of children with DCD. Self-evaluation measures will be filled directly by parents in order to measure parental stress, anxiety and depressive symptoms, quality of life, coping and emotional regulation strategies, internalized stigma, perceived social support, the child’s problem behaviors severity, as well as motor coordination deficits in children with ASD and DCD. A sociodemographic questionnaire will help collect additional useful data regarding participants and their children. Individual and semi-structured research interviews will be conducted to complete quantitative data by further exploring participants’ distinct experiences related to parenting a child with a neurodevelopmental disorder. An interview grid, specially designed for the needs of this study, will strengthen the comparison between the experiences of parents of children with ASD with those of parents of children with DCD. It will also help investigate cultural differences regarding parent support policies in the context of raising a child with ASD. Moreover, interviews will help clarify the link between certain research variables (behavioral differences between ASD and DCD, family leisure activities, family and children’s extracurricular life, etc.) and parental well-being. Research perspectives: Results of this study will provide a more holistic understanding of the roles of individual, psychosocial and cultural variables related to parental well-being. Thus, this study will help direct the implementation of support services offered to families of children with neurodevelopmental disorders (ASD and DCD). Also, the implications of this study are essential in order to guide families through changes related to public policies assisting neurodevelopmental disorders and other disabilities. The between-group comparison (ASD and DCD) is also expected to help clarify the origins of all the different challenges encountered by those families. Hence, it will be interesting to investigate whether complications perceived by parents are more likely to arise from child-symptom severity, or from the lack of support obtained from health and educational systems.

Keywords: Autism spectrum disorder, cross-cultural, cross-disorder, developmental coordination delay, well-being

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Authors: Alireza Shams, Ali Zamanian, Atefehe Shamosi, Farnaz Ghorbani

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Introduction: Although the application of a new strategy remains a remarkable challenge for treatment of disabilities due to neuronal defects, progress in Nanomedicine and tissue engineering, suggesting the new medical methods. One of the promising strategies for reconstruction and regeneration of nervous tissue is replacing of lost or damaged cells by specific scaffolds after Compressive, ischemic and traumatic injuries of central nervous system. Furthermore, ultrastructure, composition, and arrangement of tissue scaffolds are effective on cell grafts. We followed implantation and differentiation of mesenchyme stem cells to neural cells on Gelatin Polylactic-co-glycolic acid (PLGA) scaffolds coated with iron nanoparticles. The aim of this study was to evaluate the capability of stem cells to differentiate into motor neuron-like cells under topographical cues and morphogenic factors. Methods and Materials: Bone marrow mesenchymal stem cells (BMMSCs) was obtained by primary cell culturing of adult rat bone marrow got from femur bone by flushing method. BMMSCs were incubated with DMEM/F12 (Gibco), 15% FBS and 100 U/ml pen/strep as media. Then, BMMSCs seeded on Gel/PLGA scaffolds and tissue culture (TCP) polystyrene embedded and incorporated by Fe Nano particles (FeNPs) (Fe3o4 oxide (M w= 270.30 gr/mol.). For neuronal differentiation, 2×10 5 BMMSCs were seeded on Gel/PLGA/FeNPs scaffolds was cultured for 7 days and 0.5 µ mol. Retinoic acid, 100 µ mol. Ascorbic acid,10 ng/ml. Basic fibroblast growth factor (Sigma, USA), 250 μM Iso butyl methyl xanthine, 100 μM 2-mercaptoethanol, and 0.2 % B27 (Invitrogen, USA) added to media. Proliferation of BMMSCs was assessed by using MTT assay for cell survival. The morphology of BMMSCs and scaffolds was investigated by scanning electron microscopy analysis. Expression of neuron-specific markers was studied by immunohistochemistry method. Data were analyzed by analysis of variance, and statistical significance was determined by Turkey’s test. Results: Our results revealed that differentiation and survival of BMMSCs into motor neuron-like cells on Gel/PLGA/FeNPs as a biocompatible and biodegradable scaffolds were better than those cultured in Gel/PLGA in absence of FeNPs and TCP scaffolds. FeNPs had raised physical power but decreased capacity absorption of scaffolds. Well defined oriented pores in scaffolds due to FeNPs may activate differentiation and synchronized cells as a mechanoreceptor. Induction effects of magnetic FeNPs by One way flow of channels in scaffolds help to lead the cells and can facilitate direction of their growth processes. Discussion: Progression of biological properties of BMMSCs and the effects of FeNPs spreading under magnetic field was evaluated in this investigation. In vitro study showed that the Gel/PLGA/FeNPs scaffold provided a suitable structure for motor neuron-like cells differentiation. This could be a promising candidate for enhancing repair and regeneration in neural defects. Dynamic and static magnetic field for inducing and construction of cells can provide better results for further experimental studies.

Keywords: differentiation, mesenchymal stem cells, nano particles, neuronal defects, Scaffolds

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Authors: Sonja Giese, Tess N. Peacock

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South African based Innovation Edge is experimenting with technology to drive positive behavior change, enable data-driven decision making, and scale quality early years services. This paper uses five case studies to illustrate how technology can be used in resource-constrained environments to first, encourage parenting practices that build early language development (using a stage-based mobile messaging pilot, ChildConnect), secondly, to improve the quality of ECD programs (using a mobile application, CareUp), thirdly, how to affordably scale services for the early detection of visual and hearing impairments (using a mobile tool, HearX), fourthly, how to build a transparent and accountable system for the registration and funding of ECD (using a blockchain enabled platform, Amply), and finally enable rapid data collection and feedback to facilitate quality enhancement of programs at scale (the Early Learning Outcomes Measure). ChildConnect and CareUp were both developed using a design based iterative research approach. The usage and uptake of ChildConnect and CareUp was evaluated with qualitative and quantitative methods. Actual child outcomes were not measured in the initial pilots. Although parents who used and engaged on either platform felt more supported and informed, parent engagement and usage remains a challenge. This is contrast to ECD practitioners whose usage and knowledge with CareUp showed both sustained engagement and knowledge improvement. HearX is an easy-to-use tool to identify hearing loss and visual impairment. The tool was tested with 10000 children in an informal settlement. The feasibility of cost-effectively decentralising screening services was demonstrated. Practical and financial barriers remain with respect to parental consent and for successful referrals. Amply uses mobile and blockchain technology to increase impact and accountability of public services. In the pilot project, Amply is being used to replace an existing paper-based system to register children for a government-funded pre-school subsidy in South Africa. Early Learning Outcomes Measure defines what it means for a child to be developmentally ‘on track’ at aged 50-69 months. ELOM administration is enabled via a tablet which allows for easy and accurate data collection, transfer, analysis, and feedback. ELOM is being used extensively to drive quality enhancement of ECD programs across multiple modalities. The nature of ECD services in South Africa is that they are in large part provided by disconnected private individuals or Non-Governmental Organizations (in contrast to basic education which is publicly provided by the government). It is a disparate sector which means that scaling successful interventions is that much harder. All five interventions show the potential of technology to support and enhance a range of ECD services, but pathways to scale are still being tested.

Keywords: assessment, behavior change, communication, data, disabilities, mobile, scale, technology, quality

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Authors: Michelle Eichinger, Upali Nanda

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Behavior choices during college years can establish the pattern of lifelong healthy living. Nearly 1/3rd of American college students are either overweight (25 < BMI < 30) or obese (BMI > 30). In addition, overweight/obesity contributes to depression, which is a rising epidemic among college students, affecting academic performance and college drop-out rates. Overweight and obesity result in an imbalance of energy consumption (diet) and energy expenditure (physical activity). Overweight/obesity is a significant contributor to heart disease, diabetes, stroke, physical disabilities and some cancers, which are the leading causes of death and disease in the US. There has been a significant increase in obesity and obesity-related disorders such as type 2 diabetes, hypertension, and dyslipidemia among people in their teens and 20s. Historically, the evidence-based interventions for obesity prevention focused on changing the health behavior at the individual level and aimed at increasing awareness and educating people about nutrition and physical activity. However, it became evident that the environmental context of where people live, work and learn was interdependent to healthy behavior change. As a result, a comprehensive approach was required to include altering the social and built environment to support healthy living. College campus provides opportunities to support lifestyle behavior and form a health-promoting culture based on some key point of decisions such as stairs/ elevator, walk/ bike/ car, high-caloric and fast foods/balanced and nutrient-rich foods etc. At each point of decision, design, can help/hinder the healthier choice. For example, stair well design and motivational signage support physical activity; grocery store/market proximity influence healthy eating etc. There is a need to collate the vast information that is in planning and public health domains on a range of successful point of decision prompts, and translate it into architectural guidelines that help define the edge condition for critical point of decision prompts. This research study aims to address healthy behaviors through the built environment with the questions, how can we make the healthy choice an easy choice through the design of critical point of decision prompts? Our hypothesis is that well-designed point of decision prompts in the built environment of college campuses can promote healthier choices by students, which can directly impact mental and physical health related to obesity. This presentation will introduce a combined health and architectural framework aimed to influence healthy behaviors through design applied for college campuses. The premise behind developing our concept, point-of-decision design (PODD), is healthy decision-making can be built into, or afforded by our physical environments. Using effective design intervention strategies at these 'points-of-decision' on college campuses to make the healthy decision the default decision can be instrumental in positively impacting health at the population level. With our model, we aim to advance health research by utilizing point-of-decision design to impact student health via core sectors of influences within college settings, such as campus facilities and transportation. We will demonstrate how these domains influence patterns/trends in healthy eating and active living behaviors among students. how these domains influence patterns/trends in healthy eating and active living behaviors among students.

Keywords: architecture and health promotion, college campus, design strategies, health in built environment

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Authors: Sara J. Mills, Sally Howell

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The field of special education has long struggled to bridge the research to practice gap. There is ample evidence from research of effective strategies for students with special needs, but these strategies are not routinely implemented in schools in ways that yield positive results for students. In recent years, the field of special education has turned its focus to implementation science. That is, discovering effective methods of implementing evidence-based practices in school settings. Teacher training is a critical factor in implementation. This study aimed to successfully implement Schema-Based Instruction (SBI) for math problem solving in four classrooms in a special primary school serving students with language deficits, including students with Autism Spectrum Disorders (ASD) and Intellectual Disabilities (ID). Using an action research design that allowed for adjustments and modification to be made over the year-long study, two cohorts of teachers across the school were trained and supported in six-week learning cycles to implement SBI in their classrooms. The learning cycles included a one-day training followed by six weeks of one-on-one or team coaching and three fortnightly cohort group meetings. After the first cohort of teachers completed the learning cycle, modifications and adjustments were made to lesson materials in an attempt to improve their effectiveness with the second cohort. Fourteen teachers participated in the study, including master special educators (n=3), special education instructors (n=5), and classroom assistants (n=6). Thirty-one students participated in the study (21 boys and 10 girls), ranging in age from 5 to 12 years (M = 9 years). Twenty-one students had a diagnosis of ASD, 20 had a diagnosis of mild or moderate ID, with 13 of these students having both ASD and ID. The remaining students had diagnosed language disorders. To evaluate the effectiveness of the implementation approach, both student and teacher data was collected. Student data included pre- and post-tests of math word problem solving. Teacher data included fidelity of treatment checklists and pre-post surveys of teacher attitudes and efficacy for teaching problem solving. Finally, artifacts were collected throughout the learning cycle. Results from cohort 1 and cohort 2 revealed similar outcomes. Students improved in the number of word problems they answered correctly and in the number of problem-solving steps completed independently. Fidelity of treatment data showed that teachers implemented SBI with acceptable levels of fidelity (M = 86%). Teachers also reported increases in the amount of time spent teaching problem solving, their confidence in teaching problem solving and their perception of students’ ability to solve math word problems. The artifacts collected during instruction indicated that teachers made modifications to allow their students to access the materials and to show what they knew. These findings are in line with research that shows student learning can improve when teacher professional development is provided over an extended period of time, actively involves teachers, and utilizes a variety of learning methods in classroom contexts. Further research is needed to evaluate whether these gains in teacher instruction and student achievement can be maintained over time once the professional development is completed.

Keywords: implementation science, mathematics problem solving, research-to-practice gap, schema based instruction

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Authors: Denis Jordan, Daniel Golkowski, Mathias Lukas, Katharina Merz, Caroline Mlynarcik, Max Maurer, Valentin Riedl, Stefan Foerster, Eberhard F. Kochs, Andreas Bender, Ruediger Ilg

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Introduction: So far, clinical assessments that rely on behavioral responses to differentiate coma states or even predict outcome in coma patients are unreliable, e.g. because of some patients’ motor disabilities. The present study was aimed to provide prognosis in coma patients using markers from electroencephalogram (EEG), blood oxygen level dependent (BOLD) functional magnetic resonance imaging (fMRI) and [18F]-fluorodeoxyglucose (FDG) positron emission tomography (PET). Unsuperwised principal component analysis (PCA) was used for multimodal integration of markers. Methods: Approved by the local ethics committee of the Technical University of Munich (Germany) 20 patients (aged 18-89) with severe brain damage were acquired through intensive care units at the Klinikum rechts der Isar in Munich and at the Therapiezentrum Burgau (Germany). At the day of EEG/fMRI/PET measurement (date I) patients (<3.5 month in coma) were grouped in the minimal conscious state (MCS) or vegetative state (VS) on the basis of their clinical presentation (coma recovery scale-revised, CRS-R). Follow-up assessment (date II) was also based on CRS-R in a period of 8 to 24 month after date I. At date I, 63 channel EEG (Brain Products, Gilching, Germany) was recorded outside the scanner, and subsequently simultaneous FDG-PET/fMRI was acquired on an integrated Siemens Biograph mMR 3T scanner (Siemens Healthineers, Erlangen Germany). Power spectral densities, permutation entropy (PE) and symbolic transfer entropy (STE) were calculated in/between frontal, temporal, parietal and occipital EEG channels. PE and STE are based on symbolic time series analysis and were already introduced as robust markers separating wakefulness from unconsciousness in EEG during general anesthesia. While PE quantifies the regularity structure of the neighboring order of signal values (a surrogate of cortical information processing), STE reflects information transfer between two signals (a surrogate of directed connectivity in cortical networks). fMRI was carried out using SPM12 (Wellcome Trust Center for Neuroimaging, University of London, UK). Functional images were realigned, segmented, normalized and smoothed. PET was acquired for 45 minutes in list-mode. For absolute quantification of brain’s glucose consumption rate in FDG-PET, kinetic modelling was performed with Patlak’s plot method. BOLD signal intensity in fMRI and glucose uptake in PET was calculated in 8 distinct cortical areas. PCA was performed over all markers from EEG/fMRI/PET. Prognosis (persistent VS and deceased patients vs. recovery to MCS/awake from date I to date II) was evaluated using the area under the curve (AUC) including bootstrap confidence intervals (CI, *: p<0.05). Results: Prognosis was reliably indicated by the first component of PCA (AUC=0.99*, CI=0.92-1.00) showing a higher AUC when compared to the best single markers (EEG: AUC<0.96*, fMRI: AUC<0.86*, PET: AUC<0.60). CRS-R did not show prediction (AUC=0.51, CI=0.29-0.78). Conclusion: In a multimodal analysis of EEG/fMRI/PET in coma patients, PCA lead to a reliable prognosis. The impact of this result is evident, as clinical estimates of prognosis are inapt at time and could be supported by quantitative biomarkers from EEG, fMRI and PET. Due to the small sample size, further investigations are required, in particular allowing superwised learning instead of the basic approach of unsuperwised PCA.

Keywords: coma states and prognosis, electroencephalogram, entropy, functional magnetic resonance imaging, machine learning, positron emission tomography, principal component analysis

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