Search results for: injuries and disability

Authors: Yung Yau

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'Little people' are those who have extremely short stature as they suffer from rare bone diseases. They are commonly known as 'dwarves' or 'people with dwarfism'. Dwarfism is generally regarded as a type of rare disease for its extremely small odds (~1 in 15,000). On account of its rarity, dwarfism, unlike other types of disability, has attracted relatively little attention from the general public and in various academic fields (e.g. architecture, psychology and sociology) except medical science. In view of the extant research gaps, this study aims to investigate the physical barriers facing the little people in the built environment in Hong Kong. Between November 2017 and July 2018, ten little people or their family members participated in in-depth interviews. Responses of the interviewees were transcribed (i.e., speech being converted to text word for word). Interview data were then analyzed using the interpretative phenomenological analysis methodology developed by J. Smith and others in 2009. The findings of the project reveal that although Hong Kong's built environment has been designed barrier-free pursuant to the prevailing building standards, those standards do not cater to the special anthropometric characteristics of little people. As a result, little people face a lot of challenges when using built facilities. For example, most water closets, urinals, and wash hand basins are not fit for little people's use. As indicated by the project findings, we are still far away from providing a discrimination-free and barrier-free living environment for the little people in Hong Kong. To make Hong Kong society more inclusive to the little people, there is a need for further tailored building design. A set of building design principles for better inclusion of the little people in our society are highlighted. These principles include 'the building design should accommodate individuals with different heights' and 'the building design should allow individuals to use comfortably and efficiently with a minimum of fatigue'. At the end of the paper, the author also calls for an agenda for further studies. For instance, we need an anthropometric study on little people for developing practical building design guidelines.

Keywords: dwarfism, little people, inclusive buildings, people with disabilities, social sustainability

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Authors: Maria Do Carmo Baracho De Alencar, Marciene Campos Fialho, Maria Do Carmo Vitório Ramos

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The subjects affected by Repetitive Strain Injury/Work Related Musculoskeletal Disorder (RSI/WRMSD) face an everyday life marked by pain, feelings of worthlessness and incapacity caused by the disease, and aggravated often because of discrimination society. Aim: To investigate the experiences and feelings of workers affected by RSI/WRMSD in removal from work situations and to understand the repercussions on mental health. Methods: Clinical records of workers were consulted, opened from July 1, 2014, to July 1, 2015, at the Reference Center for Worker's Health, in Santos city-SP. Selection of workers affected by RSI /WRMSD and who had experienced the removal from work situation due to the disease, and invitation to participate in the study. Semi-structured and individual interviews were carried out based on a pre-elaborated script, and for thematic content analysis. Results: Of a total of 502 medical records, 157 were selected, and of these, 18 workers participated in the interviews, both gender, most of them with low education level, aged between 35 and 56 years, and from different professions. Diseases affected several physical body regions and some workers had more than one body region affected by chronic pain. In the testimonies emerged the psychic suffering by the process of illness at work, fear of dismissal, invisibility of pain, in medical expertise attendance, by the incapacity to perform tasks that were easily achievable, with feelings of uselessness, revolt, and injustice, among others. Conclusion: The workers need to be readapted to new life situations, and the study promotes reflections on the need for more interdisciplinary actions and of the Psychology to the workers affected by RSI/ WRMSD.

Keywords: repetitive strain injury, cumulative trauma disorder, absence from work, mental health, occupational health

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Authors: Ahmed A. Sedik, Doaa Mahmoud Shuaib

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Brain injury is a cause of disability and death worldwide. Potassium dichromate (PD) is an environmental contaminant widely recognized as teratogenic, carcinogenic, and mutagenic towards animals and humans. The aim of the present study was to investigate the possible neuroprotective effects of tangeretin (TNG) on PD-induced brain injury in rats. Forty male adult Wistar rats were randomly and blindly allocated into four groups (8 rats /group). The first group received saline intranasally (i.n.). The second group received a single dose of PD (2 mg/kg, i.n.). The third group received TNG (50 mg/kg; orally) for 14 days, followed by i.n. of PD on the last day of the experiment. Four groups received TNG (100 mg/kg; orally) for 14 days, followed by i.n. of PD on the last day of the experiment. 18- hours after the final treatment, behavioral parameters, neuro-biochemical indices, FTIR analysis, and histopathological studies were evaluated. Results of the present study revealed that rats intoxicated with PD promoted oxidative stress and inflammation via an increase in MDA and a decrease in Nrf2 signaling pathway and GSH levels with an increase in brain contents of TNF-α, IL-10, and NF-kβ and reduced AKT levels in brain homogenates. Treatment with TNG (100 mg/kg; orally) ameliorated behavioral, cholinergic activities and oxidative stress, decreased the elevated levels of pro-inflammatory mediators; TNF-α, IL-10, and NF-κβ elevated AKT pathway with corrected FTIR spectra with a decrease in brain content of chromium residues detected by atomic absorption spectrometry. Also, TNG administration restored the morphological changes as degenerated neurons and necrosis associated with PD intoxication. Additionally, TNG decreased Caspase-3 expression in the brain of PD rats. TNG plays a crucial role in AKT/Nrf2 pathway that is responsible for their antioxidant, anti-inflammatory effects, and apoptotic pathway against PD-induced brain injury in rats.

Keywords: tangeretin, potassium dichromate, brain injury, AKT/Nrf2 signaling pathway, FTIR, atomic absorption spectrometry

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Authors: A. Kourou, A. Ioakeimidou, A. Gakou

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Greece due to its location in the Eastern Mediterranean region is characterized by a high degree of seismicity and occurrence of severe earthquakes. It is generally accepted that preventive planning is vital in mitigating impacts, protecting those who are the most vulnerable namely children and increasing the degree of resilience of local communities. Worldwide, States have highlighted the need to ensure the safety of early childhood environments in case of disaster. A great number of children are enrolled in daycare facilities, so building and improving the preparedness of pre-primary schools to prevent injuries and fatalities in case of an earthquake becomes an important policy issue. It is more than evident that preparedness in early preschool level will be increased through awareness and education of the people who work to pre-primary classes and provide early childhood care. The aim of the present study is to assess the level of awareness and preparedness of the Greek pre-primary schools staff concerning earthquake protection issues, as well as their risk mitigation behaviors and earthquake management in case of a strong event. In this framework, specific questionnaire was developed and filled by the abovementioned target group at 30 different municipalities of Greece (2014-2016). Also in the framework of this study it is presented the Pre-Primary Schools’ Earthquake Safety Initiative that has been undertaken by Earthquake Planning and Protection Organization (EPPO) the last years. This initiative aims to develop disaster-resilient day care centers through awareness, self-help, cooperation and education. Recognizing the necessity of integration of the disaster safety concept at pre-primary environments, EPPO published practical guidelines that focused on earthquake planning of these workspaces. Furthermore, dozens of seminars are implemented in municipality or prefecture-level every year by EPPO, in order the early childhood schools’ staff to be appropriately educated and adequately trained to face the earthquake risk. Great progress has been made towards building awareness and increasing preschool preparedness in Greece but significant gaps still remain. Anyway, it is extremely important that the implementation of effective programs and practices and the broad collaboration of all involved parties have been recognized as essential in order to develop a comprehensive disaster management system at preschool environment.

Keywords: awareness, earthquake, education, emergency plans, preparedness, pre-primary schools

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Authors: Mark Linden, Rachel Leonard, Trisha Forbes, Michael Brown, Lynne Marsh, Stuart Todd, Nathan Hughes, Maria Truesdale

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Background: Current interventions which aim to improve the mental health of family carers are often face to face, which can create barriers to full participation. Online interventions can offer flexibility in delivery compared to face to face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is to improve the mental health of family carers of people with intellectual disabilities. Methods: Family carers (n = 120) will be randomised to receive the intervention (n=60) or assigned to a wait-list control (n=60) group. The intervention (www.Carers-ID.com) consists of fourteen modules which cover topics including promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports, managing family conflict and information for siblings who are carers. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and three months after completion). Secondary outcomes include, depression, anxiety, stress, well-being , resilience and social connectedness. Participants (n=12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. Discussion: To determine whether a full-scale randomised controlled effectiveness trial is warranted, feasibility testing of the intervention and trial procedures is a necessary first step. The Carers-ID intervention provides an accessible resource for family carers to support their mental health and well-being.

Keywords: intellectual disability, family carer, feasibility trial, online intervention

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Authors: John Olav Bjornestad, Bjorn Tore Johansen

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The number of people suffering from mental illnesses is increasing, and such illness is currently one of the major causes of disability and poor health. The reason for this is most likely a lack of physical activity. The purpose of this study was to discover if physical activity was an effective mode of treatment for psychiatric patients at an out-patient treatment facility. The study included an exploration of whether or not patients having physical activity included as an integral part of their treatment (to a greater degree than do patients who are physically inactive) would achieve 1) an improvement in their physical condition 2) a reduction in symptomatic pressure and 3) an increase in their health-related quality of life. The intervention period lasted a total of 12 weeks. The training group completed a minimum of 2 training sessions per week with an intensity of 60-75% of maximum heart rate. The participants’ health-related quality of life (SF-36), symptomatic pressure (SCL-90-R) and physical condition (UKK-walking test) were measured before and after intervention. Twenty participants were pre-tested, and out of this initial group, nine patients completed the intervention program and participated thereafter in post-testing. The results showed that participants on average improved their physical condition, reduced their symptomatic pressure and increased their health-related quality of life over the course of the intervention period. The training group experienced significant changes in their symptomatic pressure (the anxiety dimension) and health-related quality of life (the mental health dimension) from the pre-testing stage to the post-testing one. Furthermore, there was a significant connection between symptomatic pressure and health-related quality of life. The patients who were admitted to the psychiatric out-patient clinic were in a physical condition that was significantly poorer than that of persons of the same age in the remainder of the population. Experiences from the study and the relatively large defection from it demonstrate that there is a great need for close follow-up of psychiatric patients’ physical activity levels when physical activity and lifestyle changes are included as part of their treatment program.

Keywords: health-related quality, mental health, physical activity, physical condition

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Authors: Nkwenti Mbelli Njah

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This research was motivated by a project requested by AXA on the topic of pensions payable under the workers compensation (WC) line of business. There are two types of pensions: the compulsorily recoverable and the not compulsorily recoverable. A pension is compulsorily recoverable for a victim when there is less than 30% of disability and the pension amount per year is less than six times the minimal national salary. The law defines that the mathematical provisions for compulsory recoverable pensions must be calculated by applying the following bases: mortality table TD88/90 and rate of interest 5.25% (maybe with rate of management). To manage pensions which are not compulsorily recoverable is a more complex task because technical bases are not defined by law and much more complex computations are required. In particular, companies have to predict the amount of payments discounted reflecting the mortality effect for all pensioners (this task is monitored monthly in AXA). The purpose of this research was thus to develop a stochastic model for the future mortality of the worker’s compensation pensioners of both the Portuguese market workers and AXA portfolio. Not only is past mortality modeled, also projections about future mortality are made for the general population of Portugal as well as for the two portfolios mentioned earlier. The global model was split in two parts: a stochastic model for population mortality which allows for forecasts, combined with a point estimate from a portfolio mortality model obtained through three different relational models (Cox Proportional, Brass Linear and Workgroup PLT). The one-year death probabilities for ages 0-110 for the period 2013-2113 are obtained for the general population and the portfolios. These probabilities are used to compute different life table functions as well as the not compulsorily recoverable reserves for each of the models required for the pensioners, their spouses and children under 21. The results obtained are compared with the not compulsory recoverable reserves computed using the static mortality table (TD 73/77) that is currently being used by AXA, to see the impact on this reserve if AXA adopted the dynamic tables.

Keywords: compulsorily recoverable, life table functions, relational models, worker’s compensation pensioners

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Authors: James Boylan, Denny Meyer, Won Sun Chen

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Background: Globally, there is an increasing trend of road traffic deaths, reaching 1.35 million in 2016 in comparison to 1.3 million a decade ago, and overall, road traffic injuries are ranked as the eighth leading cause of death for all age groups. The reported death rate for younger drivers aged 16-19 years is almost twice the rate reported for older drivers aged 25 and above, with a rate of 3.5 road traffic fatalities per annum for every 10,000 licenses held. Telematics refers to a system with the ability to capture real-time data about vehicle usage. The data collected from telematics can be used to better assess a driver's risk. It is typically used to measure acceleration, turn, braking, and speed, as well as to provide locational information. With the Australian government creating the National Telematics Framework, there has been an increase in the government's focus on using telematics data to improve road safety outcomes. The purpose of this study is to test the hypothesis that improvements in telematics measured driving behaviour to relate to improvements in road safety attitudes measured by the Driving Behaviour Questionnaire (DBQ). Methodology: 28 participants were recruited and given a telematics device to insert into their vehicles for the duration of the study. The participant's driving behaviour over the course of the first month will be compared to their driving behaviour in the second month to determine whether feedback from telematics devices improves driving behaviour. Participants completed the DBQ, evaluated using a 6-point Likert scale (0 = never, 5 = nearly all the time) at the beginning, after the first month, and after the second month of the study. This is a well-established instrument used worldwide. Trends in the telematics data will be captured and correlated with the changes in the DBQ using regression models in SAS. Results: The DBQ has provided a reliable measure (alpha = .823) of driving behaviour based on a sample of 23 participants, with an average of 50.5 and a standard deviation of 11.36, and a range of 29 to 76, with higher scores, indicating worse driving behaviours. This initial sample is well stratified in terms of gender and age (range 19-27). It is expected that in the next six weeks, a larger sample of around 40 will have completed the DBQ after experiencing in-vehicle telematics for 30 days, allowing a comparison with baseline levels. The trends in the telematics data over the first 30 days will be compared with the changes observed in the DBQ. Conclusions: It is expected that there will be a significant relationship between the improvements in the DBQ and the trends in reduced telematics measured aggressive driving behaviours supporting the hypothesis.

Keywords: telematics, driving behavior, young drivers, driving behaviour questionnaire

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Authors: Alvin Han, Reema Shafi, Alishba Afaq, Jennifer Gommerman, Valeria Ramaglia, Shannon E. Dunn

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Adolescents engaged in contact-sports can suffer from recurrent brain concussions with no loss of consciousness and no need for hospitalization, yet they face the possibility of long-term neurocognitive problems. Recent studies suggest that head concussive injuries during adolescence can also predispose individuals to multiple sclerosis (MS). The underlying mechanisms of how brain concussions predispose to MS is not understood. Here, we hypothesize that: (1) recurrent brain concussions prime microglial cells, the tissue resident myeloid cells of the brain, setting them up for exacerbated responses when exposed to additional challenges later in life; and (2) brain concussions lead to the sensitization of myelin-specific T cells in the peripheral lymphoid organs. Towards addressing these hypotheses, we implemented a mouse model of closed head injury that uses a weight-drop device. First, we calibrated the model in male 12 week-old mice and established that a weight drop from a 3 cm height induced mild neurological symptoms (mean neurological score of 1.6+0.4 at 1 hour post-injury) from which the mice fully recovered by 72 hours post-trauma. Then, we performed immunohistochemistry on the brain of concussed mice at 72 hours post-trauma. Despite mice having recovered from all neurological symptoms, immunostaining for leukocytes (CD45) and IBA-1 revealed no peripheral immune infiltration, but an increase in the intensity of IBA1+ staining compared to uninjured controls, suggesting that resident microglia had acquired a more active phenotype. This microglia activation was most apparent in the white matter tracts in the brain and in the olfactory bulb. Immunostaining for the microglia-specific homeostatic marker TMEM119, showed a reduction in TMEM119+ area in the brain of concussed mice compared to uninjured controls, confirming a loss of this homeostatic signal by microglia after injury. Future studies will test whether single or repetitive concussive injury can worsen or accelerate autoimmunity in male and female mice. Understanding these mechanisms will guide the development of timed and targeted therapies to prevent MS from getting started in people at risk.

Keywords: concussion, microglia, microglial priming, multiple sclerosis

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Authors: Onosedeba Mary Ayayia

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Inclusive education has emerged as a critical global imperative, aiming to provide equitable educational opportunities for all, regardless of their abilities or disabilities. In Africa, the pursuit of inclusive education faces significant challenges, particularly concerning the development and implementation of inclusive curricula tailored to the diverse needs of students with disabilities. This study delves into the heart of this issue, seeking to address the pressing problem of exclusion and marginalization of students with disabilities in mainstream educational systems across the continent. The problem is complex, entailing issues of limited access to tailored curricula, shortages of qualified teachers in special needs education, stigmatization, limited research and data, policy gaps, inadequate resources, and limited community awareness. These challenges perpetuate a system where students with disabilities are systematically excluded from quality education, limiting their future opportunities and societal contributions. This research proposes a comprehensive examination of the current state of inclusive curriculum development and implementation in Africa. Through an innovative and explicit exploration of the problem, the study aims to identify effective strategies, guidelines, and best practices that can inform the development of inclusive curricula. These curricula will be designed to address the diverse learning needs of students with disabilities, promote teacher capacity building, combat stigmatization, generate essential data, enhance policy coherence, allocate adequate resources, and raise community awareness. The goal of this research is to contribute to the advancement of inclusive education in Africa by fostering an educational environment where every student, regardless of ability or disability, has equitable access to quality education. Through this endeavor, the study aligns with the broader global pursuit of social inclusion and educational equity, emphasizing the importance of inclusive curricula as a foundational step towards a more inclusive and just society.

Keywords: inclusive education, special education, curriculum development, Africa

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Authors: Siti Napsiyah, Ismet Firdaus, Lisma Dyawati Fuaida, Ellies Sukmawati

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This paper examines the existence, role, and challenge of Family Service Agency, in Bahasa Indonesia known as Lembaga Konsultasi Kesejahteraan Keluarga (LK3) of Syarif Hidayatullah State Islamic University (UIN) Jakarta. It has been established since 2012. It is an official agency under the Ministry of Social Affairs of Indonesia. The establishment of LK3 aims to provide psychosocial services for families of students who has psychosocial problem in their life. The study also aims to explore the trend of psychosocial problems of its client (student) for the past three years (2014-2016). The research method of the study is using a qualitative social work research method. A review of selected data of the client of LK3 UIN Syarif Hidayatullah Jakarta around five main issues: Family background, psychosocial mapping, potential resources, student coping mechanism strategy, client strength and network. The study also uses a review of academic performance report as well as an interview and observation. The findings show that the trend of psychosocial problems of the client of LK3 UIN Syarif Hidayatullah Jakarta vary as follow: bad academic performance, low income family, broken home, domestic violence, disability, mental disorder, sexual abuse, and the like. LK3 UIN Syarif Hidayatullah Jakarta has significant roles to provide psychosocial support and services for the survival of the students to deal with their psychosocial problems. Social worker of LK3 performs indigenous social work practice: individual counseling, family counseling, group therapy, home visit, case conference, Islamic Spiritual Approach, and Spiritual Emotional Freedom Technique (SEPT).

Keywords: psychosocial, indigenizing social work, resiliency, coping mechanism

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Authors: F. Fatoye, C. E. Mbada, T. Gebrye, A. O. Ogunsola, C. Fatoye, O. Oyewole

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Musculoskeletal disorders (MSDs) such as low back pain (LBP), cervical spondylosis (CSPD), sprain, osteoarthritis (OA), and post immobilization stiffness (PIS) have a major impact on individuals, health systems and society in terms of morbidity, long-term disability, and economics. This study estimated the direct and indirect costs of common MSDs in Osun State, Nigeria. A review of medical charts for adult patients attending Physiotherapy Outpatient Clinic at the Obafemi Awolowo University Teaching Hospitals Complex, Osun State, Nigeria between 2009 and 2018 was carried out. The occupational class of the patients was determined using the International Labour Classification (ILO). The direct and indirect costs were estimated using a cost-of-illness approach. Physiotherapy related health resource use, and costs of the common MSDs, including consultation fee, total fee charge per session, costs of consumables were estimated. Data were summarised using descriptive statistics mean and standard deviation (SD). Overall, 1582 (Male = 47.5%, Female = 52.5%) patients with MSDs population with a mean age of 47.8 ± 25.7 years participated in this study. The mean (SD) direct costs estimate for LBP, CSPD, PIS, sprain, OA, and other conditions were $18.35 ($17.33), $34.76 ($17.33), $32.13 ($28.37), $35.14 ($44.16), $37.19 ($41.68), and $15.74 ($13.96), respectively. The mean (SD) indirect costs estimate of LBP, CSPD, PIS, sprain, OA, and other MSD conditions were $73.42 ($43.54), $140.57 ($69.31), $128.52 ($113.46), sprain $140.57 ($69.31), $148.77 ($166.71), and $62.98 ($55.84), respectively. Musculoskeletal disorders contribute a substantial economic burden to individuals with the condition and society. The unacceptable economic loss of MSDs should be reduced using appropriate strategies. Further research is required to determine the clinical and cost effectiveness of strategies to improve health outcomes of patients with MSDs. The findings of the present study may assist health policy and decision makers to understand the economic burden of MSDs and facilitate efficient allocation of healthcare resources to alleviate the burden associated with these conditions in Nigeria.

Keywords: economic burden, low back pain, musculoskeletal disorders, real-world

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Authors: Atheer Al-Nuaimi, Harry Evdorides

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Every day many people die or get disabled or injured on roads around the world, which necessitates more specific treatments for transportation safety issues. International road assessment program (iRAP) model is one of the comprehensive road safety models which accounting for many factors that affect road safety in a cost-effective way in low and middle income countries. In iRAP model road safety has been divided into five star ratings from 1 star (the lowest level) to 5 star (the highest level). These star ratings are based on star rating score which is calculated by iRAP methodology depending on road attributes, traffic volumes and operating speeds. The outcome of iRAP methodology are the treatments that can be used to improve road safety and reduce fatalities and serious injuries (FSI) numbers. These countermeasures can be used separately as a single countermeasure or mix as multiple countermeasures for a location. There is general agreement that the adequacy of a countermeasure is liable to consistent losses when it is utilized as a part of mix with different countermeasures. That is, accident diminishment appraisals of individual countermeasures cannot be easily added together. The iRAP model philosophy makes utilization of a multiple countermeasure adjustment factors to predict diminishments in the effectiveness of road safety countermeasures when more than one countermeasure is chosen. A multiple countermeasure correction factors are figured for every 100-meter segment and for every accident type. However, restrictions of this methodology incorporate a presumable over-estimation in the predicted crash reduction. This study aims to adjust this correction factor by developing new models to calculate the effect of using multiple countermeasures on the number of fatalities for a location or an entire road. Regression models have been used to establish relationships between crash frequencies and the factors that affect their rates. Multiple linear regression, negative binomial regression, and Poisson regression techniques were used to develop models that can address the effectiveness of using multiple countermeasures. Analyses are conducted using The R Project for Statistical Computing showed that a model developed by negative binomial regression technique could give more reliable results of the predicted number of fatalities after the implementation of road safety multiple countermeasures than the results from iRAP model. The results also showed that the negative binomial regression approach gives more precise results in comparison with multiple linear and Poisson regression techniques because of the overdispersion and standard error issues.

Keywords: international road assessment program, negative binomial, road multiple countermeasures, road safety

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Authors: A. Gagat-Matuła

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There is a definite lack – in Poland, as well as around the world – of empirical studies of families raising handicapped child, in which one parent migrates. In diagnostics of the functioning of such families emphasis should be placed not only on the difficulties, but most of all it should be indicated what possibilities are there for the family and how it overcomes the difficulties. Migration of a parent on the one hand is a chance to improve the family’s material situation. In certain circumstances this may only be an “escape” into work from the issues associated with the upbringing and rehabilitation of a handicapped child. The aim of the study was to learn the functioning of a temporarily single parent family system as a result of migration of a parent from the perspective of adolescents with cerebral palsy. The study was conducted in the year 2013 in the area of Eastern Poland. It involved an analysis of 70 persons (with cerebral palsy in an intellectual capacity) from families in which at least one of the parents migrates. The study incorporated the diagnostic survey method. These tools were used: Family Evaluation Scales (SOR) adapted for Poland by Andrzej Margasiński. The explorations in this study indicate, that 47% of studied temporarily single parent families are balanced models. This is evidence of the resources at the disposal of the family which, despite the disability of the child and temporary separation, is able to function properly. The conducted studies show, that 37% of temporarily single parent families are imbalanced models in the perception of adolescents with cerebral palsy. These families experience functional difficulties and require psychological and pedagogical support. There is a need for building skills related to effective coping with family stress. Especially considering, that families of an imbalanced type do not use the internal and external resources of the family system. Such a situation may deepen the disarrangement of family life. In intermediate families (16%) there are also temporary difficulties in functioning. Separation anxiety experienced by mothers may disrupt relations and introduce additional stress factors. For that reason it is important to provide support for women with difficulties coping with the emotions associated with raising handicapped adolescents and migratory separation.

Keywords: child with cerebral palsy, family, migration, parents

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Authors: Kushal Patel, Manasa Dittakavi, Cyrus Falsafi, Gretchen Lovett

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Rural America has seen a surge in opioid addiction rates and overdose deaths in recent years, becoming a significant public health crisis. This may be due to a variety of factors, such as lack of access to healthcare or other economic and social factors that can contribute to addiction such as poverty, unemployment, and social isolation. As the opioid epidemic has disproportionately affected rural communities, pregnant women in these areas may be highly susceptible and face additional difficulties in facing the appropriate care they need. Opioid use disorder has many negative effects on prenatal infants. These include changes in their microbiome, mental health, neurodevelopment and cognition. These can affect how the child performs in various activities in life and how they interact with others. It has been demonstrated that using cognitive behavioral therapy improves not just pain-related results but also mobility, quality of life, disability, and mood outcomes. This indicates that cognitive behavioral therapy (CBT) may be a useful therapeutic strategy for enhancing general health and wellbeing in people with opioid use problems. In terms of treating psychiatric diseases, CBT carries fewer dangers than opioids. One study that illustrates the potential for CBT to promote a reduction in opioid use disorder used self-reported drug use patterns 6 months prior to and during their pregnancy. At the beginning of the study, participants reported an average of 3.78 drug or alcohol use days in the previous 28 days, which decreased to 1.63 days after treatment. The study also found a decrease in depression scores, as measured by IDS scores, from 23.9 to 17.1 at the end of treatment. These and other results show that CBT can have meaningful impacts on pregnant women in Rural America who struggle with an opioid use disorder. This project has been approved by the West Virginia School of Osteopathic Medicine- Office of Research and Sponsored Programs and deemed non-research scholarly work.

Keywords: appalachia, CBT, opiods, pregnancy

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Authors: Jeffrey Chase

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Historically the profession of Occupational Therapy was closely tied to the treatment of those suffering from mental illness; more recently, and especially in the U.S., the percentage of OTs identifying as working in the mental health area has declined significantly despite the estimate that by 2020 behavioral health disorders will surpass physical illnesses as the major cause of disability worldwide. In the U.S. less than 10% of OTs identify themselves as working with the mentally ill and/or practicing in mental health settings. Such a decline has implications for both those suffering from mental illness and the profession of Occupational Therapy. One reason cited for the decline of OT in mental health has been the limited research in the discipline addressing mental health practice. Despite significant advances in technology and growth in the field of neuroscience, major institutions and funding sources such as the National Institute of Mental Health (NIMH) have noted that research into the etiology and treatment of mental illness have met with limited success over the past 25 years. One major reason posited by NIMH is that research has been limited by how we classify individuals, that being mostly on what is observable. A new classification system being developed by NIMH, the Research Domain Criteria (RDoc), has the goal to look beyond just descriptors of disorders for common neural, genetic, and physiological characteristics that cut across multiple supposedly separate disorders. The hope is that by classifying individuals along RDoC measures that both reliability and validity will improve resulting in greater advances in the field. As a result of this change NIH and NIMH will prioritize research funding to those projects using the RDoC model. Multiple disciplines across many different setting will be required for RDoC or similar classification systems to be developed. During this shift in research methodology OT has an opportunity to reassert itself into the research and treatment of mental illness, both in developing new ways to more validly classify individuals, and to document the legitimacy of previously ill-defined and validated disorders such as sensory integration.

Keywords: global mental health and neuroscience, research opportunities for ot, greater integration of ot in mental health research, research and funding opportunities, research domain criteria (rdoc)

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Authors: Kingston Rajiah, Mari Kannan Maharajan, Si Jen Yeen, Sara Lew

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Parkinson’s disease (PD) is a progressive neurodegenerative disorder with evolving layers of complexity. Both motor and non-motor symptoms of PD may affect patients’ quality of life (QoL). Life expectancy for an individual with Parkinson’s disease depends on the level of care the individual has access to, can have a direct impact on length of life. Therefore, improvement of the QoL is a significant part of therapeutic plans. Patients with PD, especially those who are in advanced stages, are in great need of assistance, mostly from their family members or caregivers in terms of medical, emotional, and social support. The role of a caregiver becomes increasingly important with the progression of PD, the severity of motor impairment and increasing age of the patient. The nature and symptoms associated with PD can place significant stresses on the caregivers’ burden. As the prevalence of PD is estimated to more than double by 2030, it is important to recognize and alleviate the burden experienced by caregivers. This study focused on the impact of the clinical features on the QoL of PD patients, and of their caregivers. This study included PD patients along with their caregivers and was undertaken at the Malaysian Parkinson's Disease Association from June 2016 to November 2016. Clinical features of PD patients were assessed using the Movement Disorder Society revised Unified Parkinson Disease Rating Scale (MDS-UPDRS); the Hoehn and Yahr Staging of Parkinson's Disease were used to assess the severity and Parkinson's disease activities of daily living scale were used to assess the disability of Parkinson’s disease patients. QoL of PD patients was measured using the Parkinson's Disease Questionnaire-39 (PDQ-39). The revised version of the Zarit Burden Interview assessed caregiver burden. At least one of the clinical features affected PD patients’ QoL, and at least one of the QoL domains affected the caregivers’ burden. Clinical features ‘Saliva and Drooling’, and ‘Dyskinesia’ explained 29% of variance in QoL of PD patients. The QoL domains ‘stigma’, along with ‘emotional wellbeing’ explained 48.6% of variance in caregivers’ burden. Clinical features such as saliva, drooling and dyskinesia affected the QoL of PD patients. The PD patients’ QoL domains such as ‘stigma’ and ‘emotional well-being’ influenced their caregivers’ burden.

Keywords: carers, quality of life, clinical features, Malaysia

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Authors: H. C. Ozdamar , O. Kilic-Erkek, H. E. Akkaya, E. Kilic-Toprak, M. Bor-Kucukatay

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Nordic hamstring exercise (NHE) is used to increase hamstring muscle strength, prevent injuries. The aim of this study was to reveal the acute, long-term effects of 10-week NHE, followed by 5, 10-week detraining on anthropometric measurements, flexibility, anaerobic power, muscle architecture, damage, fatigue, oxidative stress, plasma viscosity (PV), blood lactate levels. 40 sedentary, healthy male volunteers underwent 10 weeks of progressive NHE followed by 5, 10 weeks of detraining. Muscle architecture was determined by ultrasonography, stiffness by strain elastography. Anaerobic power was assessed by double-foot standing, long jump, vertical jump, flexibility by sit-lie, hamstring flexibility tests. Creatine kinase activity, oxidant/antioxidant parameters were measured from venous blood by a commercial kit, whereas PV was determined using a cone-plate viscometer. The blood lactate level was measured from the fingertip. NHE allowed subjects to lose weight, this effect was reversed by detraining for 5 weeks. Exercise caused an increase in knee angles measured by a goniometer, which wasn’t affected by detraining. 10-week NHE caused a partially reversed increase in anaerobic performance upon detraining. NHE resulted in increment of biceps femoris long head (BFub) area, pennation angle, which was reversed by detraining of 10-weeks. Blood lactate levels, muscle pain, fatigue were increased after each exercise session. NHE didn’t change oxidant/antioxidant parameters; 5-week detraining resulted in an increase in total oxidant capacity (TOC) and oxidative stress index (OSI). Detraining of 10 weeks caused a reduction of these parameters. Acute exercise caused a reduction in PV at 1 to 10 weeks. Pre-exercise PV measured on the 10th week was lower than the basal value. Detraining caused the increment of PV. The results may guide the selection of the exercise type to increase performance and muscle strength. Knowing how much of the gains will be lost after a period of detraining can contribute to raising awareness of the continuity of the exercise. This work was supported by PAU Scientific Research Projects Coordination Unit (Project number: 2018SABE034)

Keywords: anaerobic power, detraining, Nordic hamstring exercise, oxidative stress, plasma viscosity

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Authors: Hanan Khojah, RuAngelie Edrada-Ebel

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Neurodegenerative disease including Alzheimer’s disease is a major cause of long-term disability. Oxidative stress is frequently implicated as one of the key contributing factors to neurodegenerative diseases. Protection against neuronal damage remains a great challenge for researchers. Ficus carica (commonly known as fig) is a species of great antioxidant nutritional value comprising a protective mechanism against innumerable health disorders related to oxidative stress as well as Alzheimer’s disease. The purpose of this work was to characterize the non-polar active metabolites in Ficus carica endocarp, mesocarp, and exocarp. Crude extracts were prepared using several extraction solvents, which included 1:1 water: ethylacetate, acetone and methanol. The dried extracts were then solvent partitioned between equivalent amounts of water and ethylacetate. Purification and fractionation were accomplished by high-throughput chromatography. The isolated metabolites were tested on their effect on human neuroblastoma cell line by cell viability test and cell cytotoxicity assay with acrolein. Molecular weights of the active metabolites were determined via LC–HRESIMS and GC-EIMS. Metabolomic profiling was performed to identify the active metabolites by using differential expression analysis software (Mzmine) and SIMCA for multivariate analysis. Structural elucidation and identification of the interested active metabolites were studied by 1-D and 2-D NMR. Significant differences in bioactivity against a concentration-dependent assay on acrolein radicals were observed between the three fruit parts. However, metabolites obtained from mesocarp and the endocarp demonstrated bioactivity to scavenge ROS radical. NMR profiling demonstrated that aliphatic compounds such as γ-sitosterol tend to induce neuronal bioactivity and exhibited bioactivity on the cell viability assay. γ-Sitosterol was found in higher concentrations in the mesocarp and was considered as one of the major phytosterol in Ficus carica.

Keywords: alzheimer, Ficus carica, γ-Sitosterol, metabolomics

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

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

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

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Authors: Tuji Mohammed Sani

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Back ground: An open tibial fracture is an injury where the fractured bone directly communicates with the outside environment. Due to the specific anatomical features of the tibia (limited soft tissue coverage), more than quarter of its fractures are classified as open, representing the most common open long-bone injuries. Open tibial fractures frequently cause significant bone comminution, periosteal stripping, soft tissue loss, contamination and are prone to bacterial entry with biofilm formation, which increases the risk of deep bone infection. Objective: The main objective of the study was to determine Prevalence of infection and its associated factors in surgically treated open tibial fracture in Addis Ababa Burn Emergency and Trauma (AaBET) center. Method: A facility based retrospective cross-sectional study was conducted among patient treated for open tibial fracture at AaBET center from September 2018 to September 2021. The data was collected from patient’s chart using structured data collection form, and Data was entered and analyzed using SPSS version 26. Bivariable and multiple binary logistic regression were fitted. Multicollinearity was checked among candidate variables using variance inflation factor and tolerance, which were less than 5 and greater than 0.2, respectively. Model adequacy were tested using Hosmer-Lemeshow goodness of fitness test (P=0.711). AOR at 95% CI was reported, and P-value < 0.05 was considered statistically significant. Result: This study found that 33.9% of the study participants had an infection. Initial IV antibiotic time (AOR=2.924, 95% CI:1.160- 7.370) and time of wound closure from injury (AOR=3.524, 95% CI: 1.798-6.908), injury to admission time (AOR=2.895, 95% CI: 1.402 – 5.977). and definitive fixation method (AOR=0.244, 95% CI: 0.113 – 0.4508) were the factors found to have a statistically significant association with the occurrence of infection. Conclusion: The rate of infection in open tibial fractures indicates that there is a need to improve the management of open tibial fracture treated at AaBET center. Time from injury to admission, time from injury to first debridement, wound closure time, and initial Intra Venous antibiotic time from the injury are an important factor that can be readily amended to improve the infection rate. Whether wound closed before seven days or not were more important factor associated with occurrences of infection.

Keywords: infection, open tibia, fracture, magnitude

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Authors: Maureen Royce, Joshi Jariwala, Sally Kah

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Change is inevitable, but the change process is progressive. Organisational change is the process in which an organisation changes strategies, operational methods, systems, culture, and structure to affect something different in the organisation. This process can be continuous or developed over a period and driven by internal and external factors. Organisational change is essential if organisations are to survive in dynamic and uncertain environments. However, evidence from research shows that many change initiatives fail, leading to severe consequences for organisations and their resources. The complex models of third sector organisations, i.e., social enterprise, compounds the levels of change in these organisations. Interestingly, innovation is associated with a change in social enterprises due to the hybridity of product and service development. Furthermore, the creation of social intervention has offered a new process and outcomes to the lifecycle of change. Therefore, different forms of organisational innovation are developed, i.e., total, evolutionary, expansionary, and developmental, which affect the interventions of social enterprises. This raises both theoretical and business concerns on how the competing hybrid nature of social enterprises change, how change is managed, and the impact on these organisations. These perspectives present critical questions for further investigation. In this study, we investigate the impact of organisational change on employees and organisational development at DaDaFest –a disability arts organisation with a social focus based in Liverpool. The three main objectives are to explore the drivers of change and the implementation process; to examine the impact of organisational change on employees and; to identify barriers to organisation change and development. To address the preceding research objectives, qualitative research design is adopted using semi-structured interviews. Data is analysed using a six-step thematic analysis framework, which enables the study to develop themes depicting the impact of change on employees and organisational development. This study presents theoretical and practical contributions for academics and practitioners. The knowledge contributions encapsulate the evolution of change and the change cycle in a social enterprise. However, practical implications provide critical insights into the change management process and the impact of change on employees and organisational development.

Keywords: organisational change, change management, organisational change system, social enterprise

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Authors: M. Ekiert, T. Uhl, A. Mlyniec

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Tendons are the biological soft tissue structures composed of collagen, proteoglycan, glycoproteins, water and cells of extracellular matrix (ECM). Tendons, which primary function is to transfer force generated by the muscles to the bones causing joints movement, are exposed to many micro and macro damages. In fact, tendons and ligaments trauma are one of the most numerous injuries of human musculoskeletal system, causing for many people (particularly for athletes and physically active people), recurring disorders, chronic pain or even inability of movement. The number of tendons reconstruction and transplantation procedures is increasing every year. Therefore, studies on soft tissues storage conditions (influencing i.e. tissue aging) seem to be an extremely important issue. In this study, an atomic-scale investigation on the kinetics of decomposition of two selected tendon components – collagen type I (which forms a 60-85% of a tendon dry mass) and elastin protein (which combine with ECM creates elastic fibers of connective tissues) is presented. A molecular model of collagen and elastin was developed based on crystal structure of triple-helical collagen-like 1QSU peptide and P15502 human elastin protein, respectively. Each model employed 4 linear strands collagen/elastin strands per unit cell, distributed in 2x2 matrix arrangement, placed in simulation box filled with water molecules. A decomposition phenomena was simulated with molecular dynamics (MD) method using ReaxFF force field and periodic boundary conditions. A set of NVT-MD runs was performed for 1000K temperature range in order to obtained temperature-depended rate of production of decomposition by-products. Based on calculated reaction rates activation energies and pre-exponential factors, required to formulate Arrhenius equations describing kinetics of decomposition of tested soft tissue components, were calculated. Moreover, by adjusting a model developed for collagen, system scalability and correct implementation of the periodic boundary conditions were evaluated. An obtained results provide a deeper insight into decomposition of selected tendon components. A developed methodology may also be easily transferred to other connective tissue elements and therefore might be used for further studies on soft tissues aging.

Keywords: decomposition, molecular dynamics, soft tissue, tendons

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Authors: Mahmood Shamshiri

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While visual sensation is the key gate for human-being to understand the world, visual impairment is one of the common cause of disability around the world. There is no doubt about the importance of eye sight in daily life among people, even it is understood the best gift of God to human-beings in many societies. Blind people are admitted to hospital for different health issues. Nurses and other health professionals who provide care for this group of patients need to understand their patients. Understanding the lived experience of blind people helps nurses to expand their knowledge regarding blind patients in order to provide a holistic care and improve the quality of care for blind patients. This phenomenological inquiry aimed to describe the meaning of discipline in daily life of blind people admitted in hospital. An interpretive phenomenology underpinned the philosophical approach of the study. While the interpretive phenomenology played as an umbrella role in the overall point of the study, the six methodical activities which introduced by van Manen helped the researchers to conduct the study. ‘Disciplined care for disciplined patients’ was the main theme emerged from dialogues of blind patients about their daily life in the hospital. Almost all of participants called themselves as disciplined people. The theme ‘disciplined care for disciplined patients’ appeared from four sub-themes including discipline through careful touching and listening, discipline as the ideal way of existence, discipline the preferred way of being independent, desire to take disciplined and detailed care, reactions to the undisciplined caring culture. This phenomenological inquiry to the experiences of patients with blindness in hospital revealed that they commonly are disciplined people and want to be cared in well-organized caring environment. Furthermore, they need to be familiar with the new caring environment. Well-organized and familiar environment help blind patients to increase the level of independency. In addition, blind patients prefer a detail informed and disciplined caring culture. Health professionals have to consider the concept of disciplined care in order to provide a holistic and comprehensive competent care.

Keywords: disciplined people, disciplined care, lived experience, patient with blindness

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Authors: Oktavian Prasetia Wardana, Martono Tri Utomo, Risa Etika, Kartika Darma Handayani, Dina Angelika, Wurry Ayuningtyas

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Background: Critically ill neonates are newborn babies with high-risk factors that potentially cause disability and/or death. Scoring systems for determining the severity of the disease have been widely developed as well as some designs for use in neonates. The SNAPPE-II method, which has been used as a mortality predictor scoring system in several referral centers, was found to be slow in assessing the outcome of critically ill neonates in the Neonatal Intensive Care Unit (NICU). Objective: To analyze the predictive value of MSNS on the outcome of critically ill neonates at the time of arrival up to 24 hours after being admitted to the NICU. Methods: A longitudinal observational analytic study based on medical record data was conducted from January to August 2022. Each sample was recorded from medical record data, including data on gestational age, mode of delivery, APGAR score at birth, resuscitation measures at birth, duration of resuscitation, post-resuscitation ventilation, physical examination at birth (including vital signs and any congenital abnormalities), the results of routine laboratory examinations, as well as the neonatal outcomes. Results: This study involved 105 critically ill neonates who were admitted to the NICU. The outcome of critically ill neonates was 50 (47.6%) neonates died, and 55 (52.4%) neonates lived. There were more males than females (61% vs. 39%). The mean gestational age of the subjects in this study was 33.8 ± 4.28 weeks, with the mean birth weight of the subjects being 1820.31 ± 33.18 g. The mean MSNS score of neonates with a deadly outcome was lower than that of the lived outcome. ROC curve with a cut point MSNS score <10.5 obtained an AUC of 93.5% (95% CI: 88.3-98.6) with a sensitivity value of 84% (95% CI: 80.5-94.9), specificity 80 % (CI 95%: 88.3-98.6), Positive Predictive Value (PPV) 79.2%, Negative Predictive Value (NPV) 84.6%, Risk Ratio (RR) 5.14 with Hosmer & Lemeshow test results p>0.05. Conclusion: The MSNS score has a good predictive value and good calibration of the outcomes of critically ill neonates admitted to the NICU.

Keywords: critically ill neonate, outcome, MSNS, NICU, predictive value

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Authors: O. Elkana, O Heyman, S. Hamdan, M. Franko, J. Vatine

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Objective: To investigate whether a direct link exists between perceived pain (PP) and executive functions (EF), above and beyond the influence of depression symptoms, in the context of medical rehabilitation. Design: Cross-sectional study. Setting: Rehabilitation Hospital. Participants: 125 medical records of hospitalized patients were screened for matching to our inclusion criteria. Only 60 patients were found fit and were asked to participate. 19 decline to participate on personal basis. The 41 neurologically intact patients (mean age 46, SD 14.96) that participated in this study were in their sub-acute stage of recovery, with fluent Hebrew, with intact upper limb (to neutralize influence on psychomotor performances) and without an organic brain damage. Main Outcome Measures: EF were assessed using the Wisconsin Card Sorting Test (WCST) and the Stop-Signal Test (SST). PP was measured using 3 well-known pain questionnaires: Pain Disability Index (PDI), The Short-Form McGill Questionnaire (SF-MPQ) and the Pain Catastrophizing Scale (PCS). Perceived pain index (PPI) was calculated by the mean score composite from the 3 pain questionnaires. Depression symptoms were assessed using the Patient Health Questionnaire (PHQ-9). Results: The results indicate that irrespective of the presence of depression symptoms, PP is directly correlated with response inhibition (SST partial correlation: r=0.5; p=0.001) and mental flexibility (WSCT partial correlation: r=-0.37; p=0.021), suggesting decreased performance in EF as PP severity increases. High correlations were found between the 3 pain measurements: SF-MPQ with PDI (r=0.62, p<0.001), SF-MPQ with PCS (r=0.58, p<0.001) and PDI with PCS (r=0.38, p=0.016) and each questionnaire alone was also significantly associated with EF; thus, no specific questionnaires ‘pulled’ the results obtained by the general index (PPI). Conclusion: Examining the direct association between PP and EF, beyond the contribution of depression symptoms, provides further clinical evidence suggesting that EF and PP share underlying mediating neuronal mechanisms. Clinically, the importance of assessing patients' EF abilities as well as PP severity during rehabilitation is underscored.

Keywords: depression, executive functions, mental-flexibility, neuropsychology, pain perception, perceived pain, response inhibition

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Authors: Aamna Lawrence, Ashutosh Mishra

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Tremors occur in 60% of the patients who have Multiple Sclerosis (MS), the most common demyelinating disease that affects the central and peripheral nervous system, and are the primary cause of disability in young adults. While pharmacological agents provide minimal benefits, surgical interventions like Deep Brain Stimulation and Thalamotomy are riddled with dangerous complications which make non-invasive electrical stimulation an appealing treatment of choice for dealing with tremors. Hence, we hypothesized that if the non-invasive electrical stimulation parameters (mainly frequency) can be computed by mathematically modeling the nerve fibre to take into consideration the minutest details of the axon morphologies, tremors due to demyelination can be optimally alleviated. In this computational study, we have modeled the random demyelination pattern in a nerve fibre that typically manifests in MS using the High-Density Hodgkin-Huxley model with suitable modifications to account for the myelin. The internode of the nerve fibre in our model could have up to ten demyelinated regions each having random length and myelin thickness. The arrival time of action potentials traveling the demyelinated and the normally myelinated nerve fibre between two fixed points in space was noted, and its relationship with the nerve fibre radius ranging from 5µm to 12µm was analyzed. It was interesting to note that there were no overlaps between the arrival time for action potentials traversing the demyelinated and normally myelinated nerve fibres even when a single internode of the nerve fibre was demyelinated. The study gave us an opportunity to design DC pulses whose frequency of application would be a function of the random demyelination pattern to block only the delayed tremor-causing action potentials. The DC pulses could be delivered to the peripheral nervous system non-invasively by an electrode bracelet that would suppress any shakiness beyond it thus paving the way for wearable neuro-rehabilitative technologies.

Keywords: demyelination, Hodgkin-Huxley model, non-invasive electrical stimulation, tremor

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Comprehensive and compassionate palliative care and support requires an integrated system of care that draws on formal health and social service providers working together with community and informal networks to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the community supports, services, and informal networks that health care professionals and social service providers rely on to allow their patients to die in their homes and communities. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers that arise as health care and social service providers attempt to build networks of care for patients with life limiting illnesses and families. Three main findings emerged: First, the variability that arises due to systemic barriers in accessing and providing care; second, the exceptionally challenging workload that providers are facing as they work to address complex social care needs (housing, disability, food security), along with escalating palliative care needs; and, finally, the lack of structural support that providers and informal care networks receive. Conclusion: These findings will facilitate and build stronger person-centred/relationship-centred principles and practices between providers, patients, community, and informal care networks by highlighting the systemic barriers to accessing and providing person-centred care. Further, they will have important implications for future partnerships in integrated care delivery programs and initiatives, community policies, education programs, and provincial and national palliative care strategies.

Keywords: public health palliative care, palliative care nursing, care networks, informal care, integrated health care

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Authors: Sachiko Hosoya

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Objectives: The purpose of this paper is to investigate the social policy of preventive genetic medicine in Iran, by following the legalization process of abortion law and the factors affecting the process in wider Iranian contexts. In this paper, ethical discussions of prenatal diagnosis and selective abortion in Iran will be presented, by exploring Iranian social policy to control genetic diseases, especially a genetic hemoglobin disorder called Thalassemia. The ethical dilemmas in application of genetic medicine into social policy will be focused. Method: In order to examine the role of the policy for prevention of genetic diseases and selective abortion in Iran, various resources have been sutudied, not only academic articles, but also discussion in the Parliament and documents related to a court case, as well as ethnographic data on living situation of Thalassemia patients. Results: Firstly, the discussion on prenatal diagnosis and selective abortion is overviewed from the viewpoints of ethics, disability rights activists, and public policy for lower-resources countries. As a result, it should be noted that the point more important in the discussion on prenatal diagnosis and selective abortion in Iran is the allocation of medical resources. Secondly, the process of implementation of national thalassemia screening program and legalization of ‘Therapeutic Abortion Law’ is analyzed, through scrutinizing documents such as the Majlis record, government documents and related laws and regulations. Although some western academics accuse that Iranian policy of selective abortion seems to be akin to eugenic public policy, Iranian government carefully avoid to distortions of the policy as ‘eugenic’. Thirdly, as a comparative example, discussions on an Iranian court case of patient’s ‘right not to be born’ will be introduced. Along with that, restrictive living environments of people with Thalassemia patients and the carriers are depicted, to understand some disabling social factors for people with genetic diseases in the local contexts of Iran.

Keywords: abortion, Iran, prenatal diagnosis, public health ethics, Thalassemia prevention program

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Authors: Abel Sichinava

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The need for organ transplantation is vigorously increasing worldwide. The numbers on the waiting lists grow, but the number of donors is not keeping up with the demand even though there is a legal possibility of decreasing the gap between the demand and supply. Most countries around the globe are facing an organ donation problem (living or deceased); however, the extent of the problem differs based on how well developed a country is. The determining issues seem to be centered on how aware the society is about the concept of organ donation, as well as cultural and religious factors. Even if people are aware of the benefits of organ donation, they may still have fears that keep them from being in complete agreement with the idea. Some believe that in the case of deceased organ donation: “the brain dead human body may recover from its injuries” or “the sick might get less appropriate treatment if doctors know they are potential donors.” In the case of living organ donations, people sometimes fear that after the donation, “it might reduce work efficiency, cause health deterioration or even death.” Another major obstacle in the organ shortage is a lack of a well developed ethical framework. In reality, there are truly an immense number of people on the waiting list, and they have only two options in order to receive a suitable organ. First is the legal way, which is to wait until their turn. Sadly, numerous patients die while on the waiting list before an appropriate organ becomes available for transplant. The second option is an illegal way: seeking an organ in a country where they can possibly get. To tell the truth, in people’s desire to live, they may choose the second option if their resources are sufficient. This process automatically involves “organ brokers.” These are people who get organs from vulnerable poor people by force or betrayal. As mentioned earlier, the high demand and low supply leads to human trafficking. The subject of the study was the large number of society from different backgrounds of their belief, culture, nationality, level of education, socio-economic status. The great majority of them interviewed online used “Google Drive Survey” and others in person. All statistics and information gathered from trusted sources annotated in the reference list and above mentioned considerable testimonies shared by the respondents are the fundamental evidence of a lack of the well developed ethical framework. In conclusion, the continuously increasing number of people on the waiting list and an irrelevant ethical framework, lead people to commit to atrocious, dehumanizing crimes. Therefore, world society should be equally obligated to think carefully and make vital decisions together for the advancement of an organ donations and its ethical framework.

Keywords: donation, ethical framwork, organ, transplant

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