Search results for: rare disease policy

Authors: Omar Nouri, Wafa Mnejja, Fatma Dhouib, Syrine Zouari, Wicem Siala, Ilhem Charfeddine, Afef Khanfir, Leila Farhat, Nejla Fourati, Jamel Daoud

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Purpose and Objective: Intensity modulated radiation (IMRT) technique, associated with induction chemotherapy (IC) and/or concomitant chemotherapy (CC), is actually the recommended treatment modality for nasopharyngeal carcinomas (NPC). The aim of this study was to evaluate the therapeutic results and the patterns of relapse with this treatment protocol. Material and methods: A retrospective monocentric study of 145 patients with NPC treated between June 2016 and July 2021. All patients received IMRT with integrated simultaneous boost (SIB) of 33 daily fractions at a dose of 69.96 Gy for high-risk volume, 60 Gy for intermediate risk volume and 54 Gy for low-risk volume. The high-risk volume dose was 66.5 Gy in children. Survival analysis was performed according to the Kaplan-Meier method, and the Log-rank test was used to compare factors that may influence survival. Results: Median age was 48 years (11-80) with a sex ratio of 2.9. One hundred-twenty tumors (82.7%) were classified as stages III-IV according to the 2017 UICC TNM classification. Ten patients (6.9%) were metastatic at diagnosis. One hundred-thirty-five patient (93.1%) received IC, 104 of which (77%) were TPF-based (taxanes, cisplatin and 5 fluoro-uracil). One hundred-thirty-eight patient (95.2%) received CC, mostly cisplatin in 134 cases (97%). After a median follow-up of 50 months [22-82], 46 patients (31.7%) had a relapse: 12 (8.2%) experienced local and/or regional relapse after a median of 18 months [6-43], 29 (20%) experienced distant relapse after a median of 9 months [2-24] and 5 patients (3.4%) had both. Thirty-five patients (24.1%) died, including 5 (3.4%) from a cause other than their cancer. Three-year overall survival (OS), cancer specific survival, disease free survival, metastasis free survival and loco-regional free survival were respectively 78.1%, 81.3%, 67.8%, 74.5% and 88.1%. Anatomo-clinic factors predicting OS were age > 50 years (88.7 vs. 70.5%; p=0.004), diabetes history (81.2 vs. 66.7%; p=0.027), UICC N classification (100 vs. 95 vs. 77.5 vs. 68.8% respectively for N0, N1, N2 and N3; p=0.008), the practice of a lymph node biopsy (84.2 vs. 57%; p=0.05), and UICC TNM stages III-IV (93.8 vs. 73.6% respectively for stage I-II vs. III-IV; p=0.044). Therapeutic factors predicting OS were a number of CC courses (less than 4 courses: 65.8 vs. 86%; p=0.03, less than 5 courses: 71.5 vs. 89%; p=0.041), a weight loss > 10% during treatment (84.1 vs. 60.9%; p=0.021) and a total cumulative cisplatin dose, including IC and CC, < 380 mg/m² (64.4 vs. 87.6%; p=0.003). Radiotherapy delay and total duration did not significantly affect OS. No grade 3-4 late side effects were noted in the evaluable 127 patients (87.6%). The most common toxicity was dry mouth which was grade 2 in 47 cases (37%) and grade 1 in 55 cases (43.3%).Conclusion: IMRT for nasopharyngeal carcinoma granted a high loco-regional control rate for patients during the last five years. However, distant relapses remain frequent and conditionate the prognosis. We identified many anatomo-clinic and therapeutic prognosis factors. Therefore, high-risk patients require a more aggressive therapeutic approach, such as radiotherapy dose escalation or adding adjuvant chemotherapy.

Keywords: therapeutic results, prognostic factors, intensity-modulated radiotherapy, nasopharyngeal carcinoma

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Authors: Areej Al-Khabbaz, Swapna Goerge, Majedah Abdul-Rasoul

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Introduction: The most prevalent periodontal disease among children is gingivitis, and it usually becomes more severe in adolescence. A number of intervention studies suggested that resolution of periodontal inflammation can improve metabolic control in patients diagnosed with diabetes mellitus. Aim: to assess the effect of non-surgical periodontal therapy on glycemic control of children diagnosed with diabetes mellitus. Method: Twenty-eight children diagnosed with diabetes mellitus were recruited with established diagnosis diabetes for at least 1 year. Informed consent and child assent form were obtained from children and parents prior to enrolment. The dental examination for the participants was performed on the same week directly following their annual medical assessment. All patients had their glycosylated hemoglobin (HbA1c%) test one week prior to their annual medical and dental visit and 3 months following non-surgical periodontal therapy. All patients received a comprehensive periodontal examination The periodontal assessment included clinical attachment loss, bleeding on probing, plaque score, plaque index and gingival index. All patients were referred for non-surgical periodontal therapy, which included oral hygiene instruction and motivation followed by supra-gingival and subg-ingival scaling using ultrasonic and hand instruments. Statistical Analysis: Data were entered and analyzed using the Statistical Package for Social Science software (SPSS, Chicago, USA), version 18. Statistical analysis of clinical findings was performed to detect differences between the two groups in term of periodontal findings and HbA1c%. Binary logistic regression analysis was performed in order to examine which factors were significant in multivariate analysis after adjusting for confounding between effects. The regression model used the dependent variable ‘Improved glycemic control’, and the independent variables entered in the model were plaque index, gingival index, bleeding %, plaque Statistical significance was set at p < 0.05. Result: A total of 28 children. The mean age of the participants was 13.3±1.92 years. The study participants were divided into two groups; Compliant group (received dental scaling) and non-complaints group (received oral hygiene instructions only). No statistical difference was found between compliant and non-compliant group in age, gender distribution, oral hygiene practice and the level of diabetes control. There was a significant difference between compliant and non-compliant group in term of improvement of HBa1c before and after periodontal therapy. Mean gingival index was the only significant variable associated with improved glycemic control level. In conclusion, this study has demonstrated that non-surgical mechanical periodontal therapy can improve HbA1c% control. The result of this study confirmed that children with diabetes mellitus who are compliant to dental care and have routine professional scaling may have better metabolic control compared to diabetic children who are erratic with dental care.

Keywords: children, diabetes, metabolic control, periodontal therapy

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Authors: Bakytzhan Bimbetov, Abay Zhangabilov, Saule Aitbaeva, Galymzhan Meirambekov

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Mare’s milk (saumal) contains in total about 40 biological components necessary for the human body. The most significant among them are amino acids, fats, carbohydrates, enzymes (lysozyme, amylase), more minerals and vitamins which are well balanced with each other. In Kazakhstan, Company "Eurasia Invest Ltd.” produces a freeze-dried saumal in form of powder by the use of modern German innovative technology by means of evaporating at low temperature (-35°C) with an appropriate pasteurization. Research of freeze-dried biomilk for the qualitative content showed that main ingredients of freshly drown milk are being preserved. We are currently studying medical and dietary properties of freeze-dried mare's milk for diseases of the digestive system, including for nonalcoholic steatohepatitis (NASH) and liver cirrhosis (LC) viral etiology. The studied group consisted of 14 patients with NASH, and 7 patients with LC viral etiology of Class A severity degree as per Child-Pugh. Patients took freeze-dried saumal, preliminary dissolved in boiled warm water (24 g. powder per 200 ml water) 3-4 times a day for a month in conjunction with basic therapy. The results were compared to a control group (11 patients with NASH and LC) who received only basic therapy without mare’s milk. Results of preliminary research showed an improvement of subjective and objective conditions of all patients, but more significant improvement of clinical symptoms and syndromes were observed in the treatment group compared to the control one. Patients with NASH significantly over time compared to the beginning of therapy decreased asthenic and dyspeptic syndromes (p<0,01). Hepatomegaly, identified on the basis of ultrasound prior to treatment was observed in 92,8±2,4% of patients, and after combination therapy hepatomegaly the rate decreased by 14,3%, amounting to 78,5±2,8%. Patients with LC also noted the improvement of asthenic (p<0,01) and dyspeptic (p<0,05) syndromes and hemorrhagic syndrome (nosebleeds and bleeding gums when brushing your teeth, p<0,05), and jaundice. Laboratory study also showed improvement in the research group, but more significant changes were observed in the experimental group. Group of patients with NASH showed a significant improvement of index in cytolysis in conjunction with a combination therapy (p<0,05). In the control group, these indicators were also improved, but they were not statistically reliable (p>0,05). Markers of liver failure were additionally studied during the study of laboratory parameters in patients with liver cirrhosis, in particular, bilirubin, albumin and prothrombin index (PTI). Combined therapy with the use of basic treatment and mare's milk showed a significant improvement in cytolysis and bilirubin (p<0,05). In our opinion, a very important and interesting fact is that, in conjunction with basic therapy, the use of mare's milk revealed an improvement of liver function in the form of normalized PTI and albumin in patients with liver cirrhosis viral etiology. Results of this work have shown therapeutic efficiency of the use of mare's milk in complex treatment of patients with liver disease and require further in-depth study.

Keywords: liver cirrhosis, non-alcohol steatohepatitis, saumal, mare’s milk

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Authors: Ilana Singer, Anastasia Lučić, Julie Leclerc

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Introduction: Tics, characterized by repetitive, sudden, non-voluntary motor movements or vocalizations, are prevalent in chronic tic disorder (CT) and Tourette Syndrome (TS). These neurodevelopmental disorders often coexist with various psychiatric conditions, leading to challenges and reduced quality of life. While medication in conjunction with behavioral interventions, such as Habit Reversal Training (HRT), Exposure Response Prevention (ERP), and Comprehensive Behavioral Intervention for Tics (CBIT), has shown efficacy, a significant proportion of patients experience persistent tics. Thus, innovative treatment approaches are necessary to improve therapeutic outcomes, such as mindfulness-based approaches. Nonetheless, the effectiveness of mindfulness-based interventions in the context of CT and TS remains understudied. Objective: The objective of this scoping review is to provide an overview of the current state of research on mindfulness-based interventions for CT and TS, identify knowledge and evidence gaps, discuss the effectiveness of mindfulness-based interventions with other treatment options, and discuss implications for clinical practice and policy development. Method: Using guidelines from Peters (2020) and the PRISMA-ScR, a scoping review was conducted. Multiple electronic databases were searched from inception until June 2023, including MEDLINE, EMBASE, PsychInfo, Global Health, PubMed, Web of Science, and Érudit. Inclusion criteria were applied to select relevant studies, and data extraction was independently performed by two reviewers. Results: Five papers were included in the study. Firstly, we found that mindfulness interventions were found to be effective in reducing anxiety and depression while enhancing overall well-being in individuals with tics. Furthermore, the review highlighted the potential role of mindfulness in enhancing functional connectivity within the Default Mode Network (DMN) as a compensatory function in TS patients. This suggests that mindfulness interventions may complement and support traditional therapeutic approaches, particularly HRT, by positively influencing brain networks associated with tic regulation and control. Conclusion: This scoping review contributes to the understanding of the effectiveness of mindfulness-based interventions in managing CT and TS. By identifying research gaps, this review can guide future investigations and interventions to improve outcomes for individuals with CT or TS. Overall, these findings emphasize the potential benefits of incorporating mindfulness-based interventions as a smaller subset within comprehensive treatment strategies. However, it is essential to acknowledge the limitations of this scoping review, such as the exclusion of a pre-established protocol and the limited number of studies available for inclusion. Further research and clinical exploration are necessary to better understand the specific mechanisms and optimal integration of mindfulness-based interventions with existing behavioral interventions for this population.

Keywords: scoping reviews, Tourette Syndrome, tics, mindfulness-based, therapy, intervention

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Authors: Niamh Higgins, Dawn Howard

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The Irish agri-food sector is of major importance to Ireland’s manufacturing sector and to the Irish economy through employment and the exporting of animal products worldwide. Infectious diseases and parasites have an impact on farm animal health causing profitability and productivity to be affected. For the sustainability of Irish dairy farming, there must be the highest standard of animal health. There can be a lack of information in accounting for > 1% of complete microbial diversity in an environment. There is the tendency of culture-based methods of microbial identification to overestimate the prevalence of species which grow easily on an agar surface. There is a need for new technologies to address these issues to assist with animal health. Metagenomic approaches provide information on both the whole genome and transcriptome present through DNA sequencing of total DNA from environmental samples producing high determination of functional and taxonomic information. Nanopore Next Generation Technologies have the ability to be powerful sequencing technologies. They provide high throughput, low material requirements and produce ultra-long reads, simplifying the experimental process. The aim of this study is to use a metagenomics approach to analyze dairy cattle faecal samples using the Oxford Nanopore MinION Next Generation Sequencer and to establish an in-house pipeline for metagenomic characterization of complex samples. Faecal samples will be obtained from Irish dairy farms, DNA extracted and the MinION will be used for sequencing, followed by bioinformatics analysis. Of particular interest, will be the parasite Buxtonella sulcata, which there has been little research on and which there is no research on its presence on Irish dairy farms. Preliminary results have shown the ability of the MinION to produce hundreds of reads in a relatively short time frame of eight hours. The faecal samples were obtained from 90 dairy cows on a Galway farm. The results from Oxford Nanopore ‘What’s in my pot’ (WIMP) using the Epi2me workflow, show that from a total of 926 classified reads, 87% were from the Kingdom Bacteria, 10% were from the Kingdom Eukaryota, 3% were from the Kingdom Archaea and < 1% were from the Kingdom Viruses. The most prevalent bacteria were those from the Genus Acholeplasma (71 reads), Bacteroides (35 reads), Clostridium (33 reads), Acinetobacter (20 reads). The most prevalent species present were those from the Genus Acholeplasma and included Acholeplasma laidlawii (39 reads) and Acholeplasma brassicae (26 reads). The preliminary results show the ability of the MinION for the identification of microorganisms to species level coming from a complex sample. With ongoing optimization of the pipe-line, the number of classified reads are likely to increase. Metagenomics has the potential in animal health for diagnostics of microorganisms present on farms. This would support wprevention rather than a cure approach as is outlined in the DAFMs National Farmed Animal Health Strategy 2017-2022.

Keywords: animal health, buxtonella sulcata, infectious disease, irish dairy cattle, metagenomics, minION, next generation sequencing

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Authors: Valentin Père, Mathieu Milhé, Fabien Baillon, Jean-Louis Dirion

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Microgrids offer potential solutions to meet the need for local grid stability and increase isolated networks autonomy with the integration of intermittent renewable energy production and storage facilities. In such a context, sizing production and storage for a given network is a complex task, highly depending on input data such as power load profile and renewable resource availability. This work aims at developing an operating cost computation methodology for different microgrid designs based on the use of deep reinforcement learning (RL) algorithms to tackle the optimal operation problem in stochastic environments. RL is a data-based sequential decision control method based on Markov decision processes that enable the consideration of random variables for control at a chosen time scale. Agents trained via RL constitute a promising class of Energy Management Systems (EMS) for the operation of microgrids with energy storage. Microgrid sizing (or design) is generally performed by minimizing investment costs and operational costs arising from the EMS behavior. The latter might include economic aspects (power purchase, facilities aging), social aspects (load curtailment), and ecological aspects (carbon emissions). Sizing variables are related to major constraints on the optimal operation of the network by the EMS. In this work, an islanded mode microgrid is considered. Renewable generation is done with photovoltaic panels; an electrochemical battery ensures short-term electricity storage. The controllable unit is a hydrogen tank that is used as a long-term storage unit. The proposed approach focus on the transfer of agent learning for the near-optimal operating cost approximation with deep RL for each microgrid size. Like most data-based algorithms, the training step in RL leads to important computer time. The objective of this work is thus to study the potential of Batch-Constrained Q-learning (BCQ) for the optimal sizing of microgrids and especially to reduce the computation time of operating cost estimation in several microgrid configurations. BCQ is an off-line RL algorithm that is known to be data efficient and can learn better policies than on-line RL algorithms on the same buffer. The general idea is to use the learned policy of agents trained in similar environments to constitute a buffer. The latter is used to train BCQ, and thus the agent learning can be performed without update during interaction sampling. A comparison between online RL and the presented method is performed based on the score by environment and on the computation time.

Keywords: batch-constrained reinforcement learning, control, design, optimal

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Authors: Lauren Dhugga, Meena Parameswaran, David Blundell, Abbas Khushnood

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Context: A multidisciplinary weekly safety briefing was implemented at the Paediatric Cardiothoracic Unit at the Freeman Hospital in Newcastle-upon-Tyne. It is a tertiary referral centre with a quarternary cardiac paediatric intensive care unit and provides complexed care including heart and lung transplants, mechanical support and advanced heart failure assessment. Aim: The aim of this briefing is to provide a structured platform of communication, in an effort to improve efficiency, safety, and patient care. Problem: The paediatric cardiothoracic unit is made up of a vast multidisciplinary team including doctors, intensivists, anaesthetists, surgeons, specialist nurses, echocardiogram technicians, physiotherapists, psychologists, dentists, and dietitians. It provides care for children with congenital and acquired cardiac disease and is one of only two units in the UK to offer paediatric heart transplant. The complexity of cases means that there can be many teams involved in providing care to each patient, and frequent movement of children between ward, high dependency, and intensive care areas. Currently, there is no structured forum for communicating important information across the department, for example, staffing shortages, prescribing errors and significant events. Strategy: An initial survey questioning the need for better communication found 90% of respondents agreed that they could think of an incident that had occurred due to ineffective communication, and 85% felt that incident could have been avoided had there been a better form of communication. Lastly, 80% of respondents felt that a weekly 60 second safety briefing would be beneficial to improve communication within our multidisciplinary team. Based on those promising results, a weekly 60 second safety briefing was implemented to be conducted on a Monday morning. The safety briefing covered four key areas (SAFE): staffing, awareness, fix and events. This was to highlight any staffing gaps, any incident reports to be learned from, any issues that required fixing and any events including teachings for the week ahead. The teams were encouraged to email suggestions or issues to be raised for the week or to approach in person with information to add. The safety briefing was implemented using change theory. Effect: The safety briefing has been trialled over 6 weeks and has received a good buy in from staff across specialties. The aim is to embed this safety briefing into a weekly meeting using the PDSA cycle. There will be a second survey in one month to assess the efficacy of the safety briefing and to continue to improve the delivery of information. The project will be presented at the next clinical governance briefing to attract wider feedback and input from across the trust. Lessons: The briefing displays promise as a tool to improve vigilance and communication in a busy multi-disciplinary unit. We have learned about how to implement quality improvement and about the culture of our hospital - how hierarchy influences change. We demonstrate how to implement change through a grassroots process, using a junior led briefing to improve the efficiency, safety, and communication in the workplace.

Keywords: briefing, communication, safety, team

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Authors: D. Cole, S. Mahootian, P. Medlock

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This research contributes to existing knowledge of the complexities surrounding women’s relationship to beauty standards by examining their lived experiences. While there is much academic work on the effects of culturally imposed and largely unattainable beauty standards, the arguments tend to fall into two paradigms. On the one hand is the radical feminist perspective that argues that women are subjected to absolute oppression within the patriarchal system in which beauty standards have been constructed. This position advocates for a complete restructuring of social institutions to liberate women from all types of oppression. On the other hand, there are liberal feminist arguments that focus on choice, arguing that women’s agency in how to present themselves is empowerment. These arguments center around what women do within the patriarchal system in order to liberate themselves. However, there is very little research on the lived experiences of women negotiating these two realms: the complex negotiation between the pressure to adhere to cultural beauty standards and the agency of self-expression and empowerment. By exploring beauty standards through the intersection of societal messages (including macro-level processes such as social media and advertising as well as smaller-scale interactions such as families and peers) and lived experiences, this study seeks to provide a nuanced understanding of how women navigate and negotiate their own presentation and sense of self-identity. Current research sees a rise in incidents of body dysmorphia, depression and anxiety since the advent of social media. Approximately 91% of women are unhappy with their bodies and resort to dieting to achieve their ideal body shape, but only 5% of women naturally possess the body type often portrayed by Americans in movies and media. It is, therefore, crucial we begin talking about the processes that are affecting self-image and mental health. A question that arises is that, given these negative effects, why do companies continue to advertise and target women with standards that very few could possibly attain? One obvious answer is that keeping beauty standards largely unattainable enables the beauty and fashion industries to make large profits by promising products and procedures that will bring one up to “standard”. The creation of dissatisfaction for some is profit for others. This research utilizes qualitative methods: interviews, questionnaires, and focus groups to investigate women’s relationships to beauty standards and empowerment. To this end, we reached out to potential participants through a video campaign on social media: short clips on Instagram, Facebook, and TikTok and a longer clip on YouTube inviting users to take part in the study. Participants are asked to react to images, videos, and other beauty-related texts. The findings of this research have implications for policy development, advocacy and interventions aimed at promoting healthy inclusivity and empowerment of women.

Keywords: women, beauty, consumerism, social media

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Authors: Louise Reyntjens

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Where criminal law used to be the traditional response to cope with the terrorist threat, European governments are increasingly relying on administrative paths. The reliance on immigration law fits into this trend. Terrorism is seen as a civilization menace emanating from abroad. In this context, the expulsion of dangerous aliens, immigration law’s core task, is put forward as a key security tool. Governments all over Europe are focusing on removing dangerous individuals from their territory rather than bringing them to justice. This research reflects on the consequences for the expelled individuals’ fundamental rights. For this, the author selected four European countries for a comparative study: Belgium, France, the United Kingdom and Sweden. All these countries face similar social and security issues, igniting the recourse to immigration law as a counterterrorism tool. Yet, they adopt a very different approach on this: the United Kingdom positions itself on the repressive side of the spectrum. Sweden on the other hand, also 'securitized' its immigration policy after the recent terrorist hit in Stockholm, but remains on the tolerant side of the spectrum. Belgium and France are situated in between. This paper addresses the situation in Belgium. In 2017, the Belgian parliament introduced several legislative changes by which it considerably expanded and facilitated the possibility to expel unwanted aliens. First, the expulsion measure was subjected to new and questionably definitions: a serious attack on the nation’s safety used to be required to expel certain categories of aliens. Presently, mere suspicions suffice to fulfil the new definition of a 'serious threat to national security'. A definition which fails to respond to the principle of legality; the law, nor the prepatory works clarify what is meant by 'a threat to national security'. This creates the risk of submitting this concept’s interpretation almost entirely to the discretion of the immigration authorities. Secondly, in name of intervening more quickly and efficiently, the automatic suspensive appeal for expulsions was abolished. The European Court of Human Rights nonetheless requires such an automatic suspensive appeal under Article 13 and 3 of the Convention. Whether this procedural reform will stand to endure, is thus questionable. This contribution also raises questions regarding expulsion’s efficacy as a key security tool. In a globalized and mobilized world, particularly in a European Union with no internal boundaries, questions can be raised about the usefulness of this measure. Even more so, by simply expelling a dangerous individual, States avoid their responsibility and shift the risk to another State. Criminal law might in these instances be more capable of providing a conclusive and long term response. This contribution explores the human rights consequences of expulsion as a security tool in Belgium. It also offers a critical view on its efficacy for protecting national security.

Keywords: Belgium, counter-terrorism and human rights, expulsion, immigration law

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Authors: Anurag Devkota

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Foreign employment serves to be the strongest pillar in engendering employment options for a large number of the young Nepali population. Nepali workers are forced to leave the comfort of their homes and are exposed to precarious conditions while on a journey to earn enough money to live better their lives. The exponential rise in foreign labour migration has produced a snowball effect on the economy of the nation. The dramatic variation in the economic development of the state has proved to establish the fact that migration is increasingly significant for livelihood, economic development, political stability, academic discourse and policy planning in Nepal. The foreign employment practice in Nepal largely incorporates the role of individual agents in the entire process of migration. With the fraudulent acts and false promises of these agents, the problems associated with every Nepali migrant worker starts at home. The workers encounter tremendous pre-departure malpractice and exploitation at home by different individual agents during different stages of processing. Although these epidemic and repetitive ill activities of intermediaries are dominant and deeply rooted, the agents have been allowed to walk free in the absence of proper laws to curb their wrongdoings and misconduct. It has been found that the existing regulatory mechanisms have not been utilised to their full efficacy and often fall short in addressing the actual concerns of the workers because of the complex legal and judicial procedures. Structural changes in the judicial setting will help bring perpetrators under the law and victims towards access to justice. Thus, a qualitative improvement of the overall situation of Nepali migrant workers calls for a proper 'regulatory' arrangement vis-à-vis these brokers. Hence, the author aims to carry out a doctrinal study using reports and scholarly articles as a major source of data collection. Various reports published by different non-governmental and governmental organizations working in the field of labour migration will be examined and the research will focus on the inductive and deductive data analysis. Hence, the real challenge of establishing a pro-migrant worker regime in recent times is to bring the agents under the jurisdiction of the court in Nepal. The Gulf Visit Study Report, 2017 prepared and launched by the International Relation and Labour Committee of Legislature-Parliament of Nepal finds that solving the problems at home solves 80 percent of the problems concerning migrant workers in Nepal. Against this backdrop, this research study is intended to determine the ways and measures to curb the role of agents in the foreign employment and labour migration process of Nepal. It will further dig deeper into the regulatory mechanisms of Nepal and map out essential determinant behind the impunity of agents.

Keywords: foreign employment, labour migration, human rights, migrant workers

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Authors: Shradha Parsekar, Suma Nair, Ajay Bailey, Binu V. S.

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Background: Concealing of cancer-related information is seen in many low-and-middle-income countries and may be associated with multiple factors. Comparatively, there is lack of information about, how breast cancers diagnosed women disclose cancer-related information to their social contacts and vice versa. To get more insights on the participant’s experience, opinions, expectations, and attitudes, a qualitative study is a suitable approach. Therefore, this study involving in-depth interviews was planned to lessen this gap. Methods: Interviews were conducted separately among breast cancer patients and their caregivers with semi-structured qualitative interview guide. Purposive and convenient sampling was being used to recruit patients and caregivers, respectively. Ethical clearance and permission from the tertiary hospital were obtained and participants were selected from the Udupi district, Karnataka, India. After obtaining a list of breast cancer diagnosed cases, participants were contacted in person and their willingness to take part in the study was taken. About 39 caregivers and 35 patients belonging to different breast cancer stages were recruited. Interviews were recorded with prior permission. Data was managed by Atlas.ti 8 software. The recordings were transcribed, translated and coded in two cycles. Most of the patients belonged to stage II and III cancer. Codes were grouped together into to whom breast cancer status was concealed to and underneath reason for the same. Main findings: followings are the codes and code families which emerged from the data. 1) Concealing the breast cancer status from social contacts other than close family members (such as extended family, neighbor and friends). Participants perceived the reasons as, a) to avoid questions which people probe (which doesn’t have answers), b) to avoid people paying courtesy visit (to inquire about the health as it is Indian culture to visit the sick person) making it inconvenient for patient and caregivers have to offer something and talk to them, c) to avoid people getting shocked (react as if cancer is different from other diseases) or getting emotional/sad, or getting fear of death d) to avoid getting negative suggestion or talking anything in front of patient as it may affect patient negatively, e) to avoid getting stigmatized, f) to avoid getting obstacle in child’s marriage. 2) Participant concealed the breast cancer status of young children as they perceived that it may a) affect studies, b) affect emotionally, c) children may get scared. 3) Concealing the breast cancer status from patients as the caregivers perceived that they have fear of a) worsening patient’s health, b) patient getting tensed, c) patient getting shocked, and d) patient getting scared. However, some participants stressed important in disclosing the cancer status to social contact/patient to make the people aware of the disease. Conclusion: The news of breast cancer spreads like electricity in the wire, therefore, patient or family avoid it for many reasons. Although, globally, due to physicians’ ethical obligations, there is an inclination towards more disclosure of cancer diagnosis and status of prognosis to the patient. However, it is an ongoing argument whether patient/social contacts should know the status especially in a country like India.

Keywords: breast cancer, concealing cancer status, India, qualitative study

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Authors: Kenji Tanaka, Kazumi Sugita, Yuto Mizushima

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This paper introduces a noteworthy form of English communication training for the officers and operators of the Osaka-Bay Marine Traffic Information Service (Osaka MARTIS) of the Japan Coast Guard working in the congested area at the Akashi Strait in Hyogo Prefecture, Japan. The authors of this paper, Marine Technical College’s (MTC) English language instructors, have been holding about forty lectures and exercises in basic and normal Maritime English (ME) for several groups of MARTIS personnel at Osaka MARTIS annually since they started the training in 2005. Trainees are expected to be qualified Maritime Third-Class Radio Operators who are responsible for providing safety information to a daily average of seven to eight hundred vessels that pass through the Akashi Strait, one of Japan’s narrowest channels. As of 2022, the instructors are conducting 55 remote lessons at MARTIS. One lesson is 90 minutes long. All 26 trainees are given oral and written assessments. The trainees need to pass the examination to become qualified operators every year, requiring them to train and maintain their linguistic levels even during the pandemic of Corona Virus Disease-19 (COVID-19). The vessel traffic information provided by Osaka MARTIS in Maritime English language is essential to the work involving the use of very high frequency (VHF) communication between MARTIS and vessels in the area. ME is the common language mainly used on board merchant, fishing, and recreational vessels, normally at sea. ME was edited and recommended by the International Maritime Organization in the 1970s, was revised in 2002, and has undergone continual revision. The vessel’s circumstances are much more serious at the strait than those at the open sea, so these vessels need ME to receive guidance from the center when passing through the narrow strait. The imminent and challenging situations at the strait necessitate that textbooks’ contents include the basics of the phrase book for seafarers as well as specific and additional navigational information, pronunciation exercises, notes on keywords and phrases, explanations about collocations, sample sentences, and explanations about the differences between synonyms especially those focusing on terminologies necessary for passing through the strait. Additionally, short Japanese-English translation quizzes about these topics, as well as prescribed readings about the maritime sector, are include in the textbook. All of these exercises have been trained in the remote education system since the outbreak of COVID-19. According to the guidelines of ME edited in 2009, the lowest level necessary for seafarers is B1 (lower individual users) of The Common European Framework of Reference for Languages: Learning, Teaching, Assessment (CEFR). Therefore, this vocational ME language training at Osaka MARTIS aims for its trainees to communicate at levels higher than B1. A noteworthy proof of improvement from this training is that most of the trainees have become qualified marine radio communication officers.

Keywords: akashi strait, B1 of CEFR, maritime english communication training, osaka martis

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Authors: David Tennison

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Epistemic injustice, an injustice done to a person specifically in their capacity as a “knower”, is a subtle form of discrimination, yet its effects can be as dehumanizing and damaging as more overt forms of discrimination. The lens of epistemic injustice has, in recent years, been fruitfully applied to the field of healthcare, examining questions of agency, power, credibility and belief in doctor-patient interactions. Contested illness patients (e.g., those with illnesses lacking scientific consensuses such as fibromyalgia (FM), Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Long Covid) face higher levels of scrutiny than other patient groups and are often disbelieved or dismissed when their ailments cannot be easily imaged or tested for- often encapsulated by the expression “it’s all in your head”. Using the case study of FM, the trials of contested illness patients in healthcare can be conceptualized in terms of epistemic injustice, and what is going wrong in these doctor-patient relationships can be effectively diagnosed. This case study also helps reveal epistemic dysfunction (structural epistemic issues embedded in the healthcare system), how this relates to stigma identity-based prejudice, and how the healthcare system upholds existing societal hierarchies and disenfranchises the most vulnerable. In the modern landscape, where cases of these chronic illnesses are not only on the rise but future pandemics threaten to add to their number, this conversation is crucial for the well-being of patients and providers. This presentation will cover what epistemic injustice is and how it can be applied to the politics of the doctor-patient interaction on a micro level and the politics of the healthcare system more broadly. Contested illnesses will be explored in terms of how the “contested” label causes the patient to experience disease stigma and lowers their credibility in healthcare and across other aspects of life. This will be explored in tandem with a discussion of existing identity-based prejudice in the healthcare system and how social identities (such as those of gender, race, and socioeconomic status) intersect with the contested illness label. The effects of epistemic injustice, which include worsening patients’ symptoms of mental health and potentially disenfranchising them from the healthcare system altogether, will be presented alongside the potential ethical quandaries this poses for providers. Finally, issues with the way healthcare appointments and the modern NHS function will be explored in terms of epistemic injustice and solutions to improve doctor-patient communication and patient care will be discussed. The relationship between contested illness patients and healthcare providers is notoriously poor, and while this can mean frustration or feelings of unfulfillment in providers, the negative effects for patients are much more severe. The purpose of this research, then, is to highlight these issues and suggest ways in which to improve the healthcare experience for these patients, along with improving doctor-patient communication and mending the doctor-patient relationship in a tangible and realistic way. This research also aims to provoke important conversations about belief and hierarchy in medical settings and how these aspects intersect with identity prejudices.

Keywords: epistemic injustice, fibromyalgia, contested illnesses, chronic illnesses, doctor-patient relationships, philosophy of medicine

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Authors: Megan L. Srinivas

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Individuals with underlying rheumatologic diseases such as dermatomyositis may not adequately respond to tuberculin (PPD) skin tests, creating false negative results. These illnesses are frequently treated with immunosuppressive therapy making proper identification of TB infection imperative. A 59-year-old Filipino man was diagnosed with dermatomyositis on the basis of rash, electromyography, and muscle biopsy. He was initially treated with IVIG infusions and transitioned to oral prednisone and mycophenolate. The patient’s symptoms improved on this regimen. Six months after starting mycophenolate, the patient began having fevers, night sweats, and productive cough without hemoptysis. He moved from the Philippines 5 years prior to dermatomyositis diagnosis, denied sick contacts, and was PPD negative both at immigration and immediately prior to starting mycophenolate treatment. A third PPD was negative following the onset of these new symptoms. He was treated for community-acquired pneumonia, but symptoms worsened over 10 days and he developed watery diarrhea and a growing non-tender, non-mobile mass on the left side of his neck. A chest x-ray demonstrated a cavitary lesion in right upper lobe suspicious for TB that had not been present one month earlier. Chest CT corroborated this finding also exhibiting necrotic hilar and paratracheal lymphadenopathy. Neck CT demonstrated the left-sided mass as cervical chain lymphadenopathy. Expectorated sputum and stool samples contained acid-fast bacilli (AFB), cultures showing TB bacteria. Fine-needle biopsy of the neck mass (scrofula) also exhibited AFB. An MRI brain showed nodular enhancement suspected to be a tuberculoma. Mycophenolate was discontinued and dermatomyositis treatment was switched to oral prednisone with a 3-day course of IVIG. The patient’s infection showed sensitivity to standard RIPE (rifampin, isoniazid, pyrazinamide, and ethambutol) treatment. Within a week of starting RIPE, the patient’s diarrhea subsided, scrofula diminished, and symptoms significantly improved. By the end of treatment week 3, the patient’s sputum no longer contained AFB; he was removed from isolation, and was discharged to continue RIPE at home. He was discharged on oral prednisone, which effectively addressed his dermatomyositis. This case illustrates the unreliability of PPD tests in patients with long-term inflammatory diseases such as dermatomyositis. Other immunosuppressive therapies (adalimumab, etanercept, and infliximab) have been affiliated with conversion of latent TB to disseminated TB. Mycophenolate is another immunosuppressive agent with similar mechanistic properties. Thus, it is imperative that patients with long-term inflammatory diseases and high-risk TB factors initiating immunosuppressive therapy receive a TB blood test (such as a quantiferon gold assay) prior to the initiation of therapy to ensure that latent TB is unmasked before it can evolve into a disseminated form of the disease.

Keywords: dermatomyositis, immunosuppressant medications, mycophenolate, disseminated tuberculosis

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Authors: Chung-Yuan Wang, Min Hsu, Bo-Ya Juan, Hsiv Ching Lin, Hsveh Min Lin, Hsiu-Fang Yeh

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The success of Taiwan's National Health Insurance (NHI) system attracts widespread praise from the international society. However, the availability of medical care in a emote area is limited. Without the convenient public transportation system and mature social welfare policy, these people are difficult to regain their health and prevent disability. Preterm children have more risk to get development delay. Preterm children in a remote area have the human right to get rehabilitation resources as those in the city area. Therefore, the aim of this study was to show the importance of development screening to preterm children in a remote area and a tract the government to notice the issue. In Pingtung, children who are suspected development delay would be suggested to take a skillful screening evaluation in our hospital. Those preterm children (within 1-year-old) visited our pediatric clinic would also be referred to take the development evaluation. After the physiatrist’s systemic evaluation, the subjects would be scheduled to take the development evaluation. Gross motor, fine motor, speech comprehension/expression and mental study were included. The evaluation was in-charged by a physical therapist, occupational therapy, speech therapist and pediatric psychologist. The tools were Peabody developmental scale, Bayley Scales of Infant and Toddler Development (Bayley-III) and Wechsler Preschool & Primary Scale of Intelligence-Revised (WPPSI-R). In 2013, 459 children received the service in our hospital. Among these children, fifty-seven were noted with preterm baby history (gestation within 37 weeks). Thirty-six of these preterm children, who had never receive development evaluation, were included in this study. Thirty-six subjects (twenty-six male and ten female) were included. Nineteen subjects were found development delay. Six subjects were found suspected development delay. In gross motor, six subjects were development delay and eight were suspected development delay. In fine motor, five subjects were development delay and three were suspected development delay. In speech, sixteen subjects were development delay and six were suspected development delay. In our study, through the provision of development evaluation service, 72.2% preterm baby were found their development delay or suspected delay. They need further early intervention rehabilitation service. We made their parents realize that when development delay was recognized at the early stage, they are often reversible. No only the patients but also their families were improved their health status. The number of the subjects was limited in our study. Further study might be needed. Compared with 770 physical therapist (PT) and 370 occupational therapy (OT) in Taipei, there are only 108 PT and 54 OT in Pingtung. Further, there are much fewer therapists working on the field of pediatric rehabilitation. Living healthy is a human's right, no matter where does he live. For those development delay children in remote area, particularly preterm children, early detection, and early intervention rehabilitation service could play an important role in decreasing their disability and improving their quality of life. Through this study, we suggest the government to add more national resources on the development evaluation to preterm children in a remote area.

Keywords: development, early intervention, preterm children, rehabilitation

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Authors: Moira Cordiner

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As a result of an Australian university approving a policy to improve the quality of assessment practices, as an academic developer (AD) with expertise in criterion-referenced assessment commenced in 2008. The four-year appointment was to support 40 'champions' in their Schools. This presentation is based on the experiences of a group of Chemistry academics who worked with the AD to develop and implement an honours dissertation rubric. Honours is a research year following a three-year undergraduate year. If the standard of the student's work is high enough (mainly the dissertation) then the student can commence a PhD. What became clear during the process was that much more was at stake than just the successful development and trial of the rubric, including academics' reputations, university rankings and research outputs. Working with the champion-Head of School(HOS) and the honours coordinator, the AD helped them adapt an honours rubric that she had helped create and trial successfully for another Science discipline. A year of many meetings and complex power plays between the two academics finally resulted in a version that was critiqued by the Chemistry teaching and learning committee. Accompanying the rubric was an explanation of grading rules plus a list of supervisor expectations to explain to students how the rubric was used for grading. Further refinements were made until all staff were satisfied. It was trialled successfully in 2011, then small changes made. It was adapted and implemented for Medicine honours with her help in 2012. Despite coming to consensus about statements of quality in the rubric, a few academics found it challenging matching these to the dissertations and allocating a grade. They had had no time to undertake training to do this, or make overt their implicit criteria and standards, which some admitted they were using - 'I know what a first class is'. Other factors affecting grading included: the small School where all supervisors knew each other and the students, meant that friendships and collegiality were at stake if low grades were given; no external examiners were appointed-all were internal with the potential for bias; supervisors’ reputations were at stake if their students did not receive a good grade; the School's reputation was also at risk if insufficient honours students qualified for PhD entry; and research output was jeopardised without enough honours students to work on supervisors’ projects. A further complication during the study was a restructure of the university and retrenchments, with pressure to increase research output as world rankings assumed greater importance to senior management. In conclusion, much more was at stake than developing a usable rubric. The HOS had to be seen to champion the 'new' assessment practice while balancing institutional demands for increased research output and ensuring as many honours dissertations as possible met high standards, so that eventually the percentage of PhD completions and research output rose. It is therefore in the institution's best interest for this cycle to be maintained as it affects rankings and reputations. In this context, are rubrics redundant?

Keywords: explicit and implicit standards, judging quality, university rankings, research reputations

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Authors: Orkide Donma, Mustafa M. Donma

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Obesity is a low-grade inflammatory disease and may lead to health problems such as hypertension, dyslipidemia, diabetes. It is also associated with important risk factors for cardiovascular diseases. This requires the detailed evaluation of obesity, particularly in children. The aim of this study is to enlighten the potential associations between lipid ratios and obesity indices and to introduce those with discriminating features among children with obesity and metabolic syndrome (MetS). A total of 408 children (aged between six and eighteen years) participated in the scope of the study. Informed consent forms were taken from the participants and their parents. Ethical Committee approval was obtained. Anthropometric measurements such as weight, height as well as waist, hip, head, neck circumferences and body fat mass were taken. Systolic and diastolic blood pressure values were recorded. Body mass index (BMI), diagnostic obesity notation model assessment index-II (D2 index), waist-to-hip, head-to-neck ratios were calculated. Total cholesterol, triglycerides, high-density lipoprotein cholesterol (HDLChol), low-density lipoprotein cholesterol (LDLChol) analyses were performed in blood samples drawn from 110 children with normal body weight, 164 morbid obese (MO) children and 134 children with MetS. Age- and sex-adjusted BMI percentiles tabulated by World Health Organization were used to classify groups; normal body weight, MO and MetS. 15^th-to-85^th percentiles were used to define normal body weight children. Children, whose values were above the 99th percentile, were described as MO. MetS criteria were defined. Data were evaluated statistically by SPSS Version 20. The degree of statistical significance was accepted as p≤0.05. Mean±standard deviation values of BMI for normal body weight children, MO children and those with MetS were 15.7±1.1, 27.1±3.8 and 29.1±5.3 kg/m², respectively. Corresponding values for the D2 index were calculated as 3.4±0.9, 14.3±4.9 and 16.4±6.7. Both BMI and D2 index were capable of discriminating the groups from one another (p≤0.01). As far as other obesity indices were considered, waist-to hip and head-to-neck ratios did not exhibit any statistically significant difference between MO and MetS groups (p≥0.05). Diagnostic obesity notation model assessment index-II was correlated with the triglycerides-to-HDL-C ratio in normal body weight and MO (r=0.413, p≤0.01 and r=0.261, (p≤0.05, respectively). Total cholesterol-to-HDL-C and LDL-C-to-HDL-C showed statistically significant differences between normal body weight and MO as well as MO and MetS (p≤0.05). The only group in which these two ratios were significantly correlated with waist-to-hip ratio was MetS group (r=0.332 and r=0.334, p≤0.01, respectively). Lack of correlation between the D2 index and the triglycerides-to-HDL-C ratio was another important finding in MetS group. In this study, parameters and ratios, whose associations were defined previously with increased cardiovascular risk or cardiac death have been evaluated along with obesity indices in children with morbid obesity and MetS. Their profiles during childhood have been investigated. Aside from the nature of the correlation between the D2 index and triglycerides-to-HDL-C ratio, total cholesterol-to-HDL-C as well as LDL-C-to- HDL-C ratios along with their correlations with waist-to-hip ratio showed that the combination of obesity-related parameters predicts better than one parameter and appears to be helpful for discriminating MO children from MetS group.

Keywords: children, lipid ratios, metabolic syndrome, obesity indices

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Authors: Veli Durmus, Mert Uydaci

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Every patient who needs to get a medical treatment should share health-related personal data with healthcare providers. Therefore, personal health data plays an important role to make health decisions and identify health threats during every encounter between a patient and caregivers. In other words, health data can be defined as privacy and sensitive information which is protected by various health laws and regulations. In many cases, the data are an outcome of the confidential relationship between patients and their healthcare providers. Globally, almost all nations have own laws, regulations or rules in order to protect personal data. There is a variety of instruments that allow authorities to use the health data or to set the barriers data sharing across international borders. For instance, Directive 95/46/EC of the European Union (EU) (also known as EU Data Protection Directive) establishes harmonized rules in European borders. In addition, the General Data Protection Regulation (GDPR) will set further common principles in 2018. Because of close policy relationship with EU, this study provides not only information on regulations, directives but also how they play a role during the legislative process in Turkey. Even if the decision is controversial, the Board has recently stated that private or public healthcare institutions are responsible for the patient call system, for doctors to call people waiting outside a consultation room, to prevent unlawful processing of personal data and unlawful access to personal data during the treatment. In Turkey, vast majority private and public health organizations provide a service that ensures personal data (i.e. patient’s name and ID number) to call the patient. According to the Board’s decision, hospital or other healthcare institutions are obliged to take all necessary administrative precautions and provide technical support to protect patient privacy. However, this application does not effectively and efficiently performing in most health services. For this reason, it is important to draw a legal framework of personal health data by stating what is the main purpose of this regulation and how to deal with complicated issues on personal health data in Turkey. The research is descriptive on data protection law for health care setting in Turkey. Primary as well as secondary data has been used for the study. The primary data includes the information collected under current national and international regulations or law. Secondary data include publications, books, journals, empirical legal studies. Consequently, privacy and data protection regimes in health law show there are some obligations, principles and procedures which shall be binding upon natural or legal persons who process health-related personal data. A comparative approach presents there are significant differences in some EU member states due to different legal competencies, policies, and cultural factors. This selected study provides theoretical and practitioner implications by highlighting the need to illustrate the relationship between privacy and confidentiality in Personal Data Protection in Health Law. Furthermore, this paper would help to define the legal framework for the health law case studies on data protection and privacy.

Keywords: data protection, personal data, privacy, healthcare, health law

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Authors: M. D. Nirmani, K. L. N. Perera, G. H. Galhena

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Dengue has become one of the most important arbo-viral disease in all tropical and subtropical regions of the world. Aedes aegypti, is the principal vector of the virus, vary in both epidemiological and behavioral characteristics, which could be finely measured through DNA sequence comparison at their population level. Such knowledge in the population differences can assist in implementation of effective vector control strategies allowing to make estimates of the gene flow and adaptive genomic changes, which are important predictors of the spread of Wolbachia infection or insecticide resistance. As such, this study was undertaken to investigate the phylogenetic relationships of Ae. aegypti from Galle and Colombo, Sri Lanka, based on the ribosomal protein region which spans between two exons, in order to understand the geographical distribution of genetically distinct mosquito clades and its impact on mosquito control measures. A 320bp DNA region spanning from 681-930 bp, corresponding to the ribosomal protein, was sequenced in 62 Ae. aegypti larvae collected from Galle (N=30) and Colombo (N=32), Sri Lanka. The sequences were aligned using ClustalW and the haplotypes were determined with DnaSP 5.10. Phylogenetic relationships among haplotypes were constructed using the maximum likelihood method under Tamura 3 parameter model in MEGA 7.0.14 including three previously reported sequences of Australian (N=2) and Brazilian (N=1) Ae. aegypti. The bootstrap support was calculated using 1000 replicates and the tree was rooted using Aedes notoscriptus (GenBank accession No. KJ194101). Among all sequences, nineteen different haplotypes were found among which five haplotypes were shared between 80% of mosquitoes in the two populations. Seven haplotypes were unique to each of the population. Phylogenetic tree revealed two basal clades and a single derived clade. All observed haplotypes of the two Ae. aegypti populations were distributed in all the three clades, indicating a lack of genetic differentiation between populations. The Brazilian Ae. aegypti haplotype and one of the Australian haplotypes were grouped together with the Sri Lankan basal haplotype in the same basal clade, whereas the other Australian haplotype was found in the derived clade. Phylogram showed that Galle and Colombo Ae. aegypti populations are highly related to each other despite the large geographic distance (129 Km) indicating a substantial genetic similarity between them. This may have probably arisen from passive migration assisted by human travelling and trade through both land and water as the two areas are bordered by the sea. In addition, studied Sri Lankan mosquito populations were closely related to Australian and Brazilian samples. Probably this might have caused by shipping industry between the three countries as all of them are fully or partially enclosed by sea. For example, illegal fishing boats migrating to Australia by sea is perhaps a good mean of transportation of all life stages of mosquitoes from Sri Lanka. These findings indicate that extensive mosquito migrations occur between populations not only within the country, but also among other countries in the world which might be a main barrier to the successful vector control measures.

Keywords: Aedes aegypti, dengue control, extensive mosquito migration, haplotypes, phylogeny, ribosomal protein

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Authors: Mary A. Lindell

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Adults with intellectual disabilities (ID) are increasingly attending postsecondary institutions, including inclusive residential programs at four-year universities. The legislation, national organizations, and researchers support developing postsecondary education (PSE) options for this historically underserved population. Simultaneously, researchers are assessing the quality of life indicators (QOL) for people with ID. This study explores the quality of life characteristics for individuals with ID entering a two-year PSE program. A survey aligned with the PSE program was developed and administered to participants before they began their college program (in future studies, the same survey will be administered 6 months and 1 year after graduating). Employment, income, and housing are frequently cited QOL measures. People with disabilities, and especially people with ID, are more likely to experience unemployment and low wages than people without disabilities. PSE improves adult outcomes (e.g., employment, income, housing) for people with and without disabilities. Similarly, adults with ID who attend PSE are more likely to be employed than their peers who do not attend PSE; however, adults with ID are least likely among their typical peers and other students with disabilities to attend PSE. There is increased attention to providing individuals with ID access to PSE and more research is needed regarding the characteristics of students attending PSE. This study focuses on the participants of a fully residential two-year program for individuals with ID. Students earn an Applied Skills Certificate while focusing on five benchmarks: self-care, home care, relationships, academics, and employment. To create a QOL measure, the goals of the PSE program were identified, and possible assessment items were initially selected from the National Core Indicators (NCI) and the National Transition Longitudinal Survey 2 (NTLS2) that aligned with the five program goals. Program staff and advisory committee members offered input on potential item alignment with program goals and expected value to students with ID in the program. National experts in researching QOL outcomes of people with ID were consulted and concurred that the items selected would be useful in measuring the outcomes of postsecondary students with ID. The measure was piloted, modified, and administered to incoming students with ID. Research questions: (1) In what ways are students with ID entering a two-year PSE program similar to individuals with ID who complete the NCI and NTLS2 surveys? (2) In what ways are students with ID entering a two-year PSE program different than individuals with ID who completed the NCI and NTLS2 surveys? The process of developing a QOL measure specific to a PSE program for individuals with ID revealed that many of the items in comprehensive national QOL measures are not relevant to stake-holders of this two-year residential inclusive PSE program. Specific responses of students with ID entering an inclusive PSE program will be presented as well as a comparison to similar items on national QOL measures. This study explores the characteristics of students with ID entering a residential, inclusive PSE program. This information is valuable for, researchers, educators, and policy makers as PSE programs become more accessible for individuals with ID.

Keywords: intellectual disabilities, inclusion, post-secondary education, quality of life

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Authors: J. Dutton, L. Knight

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Achieving quality and respectful maternal health care is part of the global agenda to improve reproductive health and achieve universal reproductive rights. Barriers to quality of care in South African maternal health facilities exist at both systemic and individual levels. Addition to this, the normalization of gender violence within South Africa has a large impact on people seeking health care as well as those who provide care within health facilities. The hierarchical environment of South Africa’s public health system penalizes both patients and providers who battle to assume any assessable power. This paper explores how systemic and individual level barriers to quality of care affect the midwifery profession within South African maternal health services and create, at times, an environment of enmity rather than care. This paper analyzes and discusses the data collected from in-depth, semi-structured interviews with nurses and midwives at three maternal health facilities in South Africa. This study has taken a holistic approach to understand the realities of nurses and midwives in order to explore the ways in which experience informs their practice and treatment of pregnant women. Through collecting and analyzing narratives, linkages between nurses and midwives day-to-day and historical experiences and disrespectful care have been made. Findings from this study show that barriers to quality of care take form in complex and interrelated ways. The physical structure of the health facility, human resource shortages, and the current model of maternal health care, which often lacks a person-centered approach, is entangled within personal beliefs and attitudes of what it means to be a midwife to create an environment that is often not conducive to a positive birthing experience. This entanglement sits within a society of high rates of violence, inequality, and poverty. Having teased out the nuances of each of these barriers and the multiple ways they reinforce each other, the findings of this paper demonstrate that birth, and the work of a midwife, are situated in a mode of discipline and punishment within this context. For analytical purposes, this paper has broken down the individual barriers to quality care and discusses the current and historical significance before returning to the interrelated forms in which barriers to quality maternal health care manifest. In conclusion this paper questions the role of agency in the ability to subvert systemic barriers to quality care and ideas around shifting attitudes and beliefs of and about midwives. International and local policies and guidelines have a role to play in realizing such shifts, however, as this paper suggests, when policy does not speak to the local context there is the risk of it contributing to frustrations and impeding the path to quality and respectful maternal health care.

Keywords: disrespect and abuse in childbirth, midwifery, South African maternal health care, quality of care

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Authors: Ayomi Indika Irugalbandara

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Reproductive Health (RE) education among Sri Lankan Adolescents (comprising one fifth inner population) remains unsatisfactory despite 91.8% of them completing primary education & 56.2 % receiving post secondary level education. The main reason for this large population not receiving satisfactory RH education is traditional values and longstanding taboos surrounding sexuality. The current study was undertaken with there objectives. The relevance of achieving them being to formulate RH educational policies and programs that address a sizable and sensitive chunk of the population thereby achieving the goal of mental and social well being and not merely the absence of reproductive disease or infirmity. This research was a descriptive study, using random sampling technique, sample of the study consisting of 160 adolescent in the age group of 16-19, studying in government schools in Sri Lanka. Questionnaire was the main instrument of data collection, qualitative and quantitative techniques were used in data analysis. According to the data it was revealed that a majority has some idea about RH education. While this awareness had been provided by the school, the source of information had been Health and Physical Education. The entire sample mentioned that more RH information, than was provided, should be given and everybody wanted further knowledge regarding sexuality, and in depth information on it was essential. About 96 adolescents were of the opinion that their behavior was respectful to elders and 64 felt embarrassed while communicating with elders regarding RH issues. About their preferred sources of information, both genders named health providers as their first choice, followed by family members and friends. The internet was cited by a few boys; less than 5 percent cited religious figures. More than 50% of respondents had no knowledge about abortion and they were unaware of dangerous abortion. The practice of abortion was reported among zero percent. Although every member of the sample did not possess knowledge of the scientific process involved in abortion, all of them totally rejected the idea of destroying a foetus. Adolescence is a critical period in the life of girls and boys and sexuality education empowers young people to protect their health and well-being. Schools have the proper staff, and environment for learning. It might be stated that the greater segment of individuals entering adolescents and going through their adolescence are still in the school. This becomes the reason why it is mandatory that the school should be geared to handle this critical stage of the students. Adolescents or those approaching adolescence are best educated by the relevant parents, but this being quite a sensitive issue in the socio cultural context, it is somewhat doubtful whether all parents are prepared to handle this candidly, due either to lack of knowledge or absence of the appropriate state of mind. As such it is best that seminars/workshops be conducted to enlighten parents on handling HR issues related to their adolescent children. Apart from the awareness on HR provided through the school curriculum a greater impact can be brought about through street dramas, exhibitions etc. specific to HR. Finally the researcher would like to suggest that Sunday schools be harnessed for the provision of HR education linked with cultural values, ethics, and social well-being.

Keywords: reproductive health, awareness, perception, school curriculum

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Authors: Federica Marangio

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This study looks at the triangle of knowledge: research-education-innovation as growth engine of an inclusive and sustainable society, where the research is the strategic process which allows the acquisition of knowledge, innovation appraises the knowledge acquired and the education is the enabling factor of the human capital to create entrepreneurial capital. Where does Italy and China stand in the global geography of innovation? Europe is calling on a smart, inclusive and sustainable growth through a specializing process that looks at the social and economic challenges, able to understand the characteristics of specific geographic areas. It is easily questionable why it is not as simple as it looks to come up with entrepreneurial ideas in all the geographic areas. Seen that the technology plus the human capital should be the means through which is possible to innovate and contribute to the boost of innovation culture, then the young educated people can be seen as the society changing agents and it becomes clear the importance of investigating the skills and competencies that lead to innovation. By starting innovation-based activities, other countries on an international level, are able now to be part of an healthy innovative ecosystem which is the result of a strong growth policy which enables innovation. Analyzing the geography of the innovation on a global scale, comes to light that the innovative entrepreneurship is the process which portrays the competitiveness of the regions in the knowledge-based economy as strategic process able to match intellectual capital and market opportunities. The level of innovative entrepreneurship is not only the result of the endogenous growth ability of the enterprises, but also by significant relations with other enterprises, universities, other centers of education and institutions. To obtain more innovative entrepreneurship is necessary to stimulate more synergy between all these territory actors in order to create, access and value existing and new knowledge ready to be disseminate. This study focuses on individual’s lived experience and the researcher believed that she can’t understand the human actions without understanding the meaning that they attribute to their thoughts, feelings, beliefs and so given she needed to understand the deeper perspectives captured through face-to face interaction. A case study approach will contribute to the betterment of knowledge in this field. This case study will represent a picture of the innovative ecosystem and the entrepreneurial mindset as a key ingredient of endogenous growth and a must for sustainable local and regional development and social cohesion. The case study will be realized analyzing two Chinese companies. A structured set of questions will be asked in order to gain details on what generated success or failure in the different situations with the past and at the moment of the research. Everything will be recorded not to lose important information during the transcription phase. While this work is not geared toward testing a priori hypotheses, it is nevertheless useful to examine whether the projects undertaken by the companies, were stimulated by enabling factors that, as result, enhanced or hampered the local innovation culture.

Keywords: Entrepreneurship, education, geography of innovation, education.

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Authors: Ujene Ikem Godspower

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Acts of terror perpetrated either by state or non-state actors are considered a social ill and impugn on the collective well-being of the society. As such, there is the need for social reparations, which is meant to ensure the healing of the social wounds resulting from the atrocities committed by errant individuals under different guises. In order to ensure social closure and effectively repair the damages done by anomic behaviors, society must ensure that justice is served and those whose rights and privileges have been denied and battered are given the necessary succour they deserve. With regards to the ongoing terrorism in the Northeast, the moves to rehabilitate and reintegrate Boko Haram members have commenced with the establishment of Operation Safe Corridor,1 and a proposed bill for the establishment of “National Agency for the Education, Rehabilitation, De-radicalisation and Integration of Repentant Insurgents in Nigeria”2. All of which Nigerians have expressed mixed feelings about. Some argue that the endeavor is lacking in ethical decency and justice and totally insults human reasoning. Terrorism and counterterrorism in Nigeria have been enmeshed in gross human rights violations both by the military and the terrorists, and this raises the concern of Nigeria’s ability to fairly and justiciably implement the deradicalization and reintegration efforts. On the other hand, there is the challenge of the community dwellers that are victims of terrorism and counterterrorism and their ability to forgive and welcome back their immediate-past tormentors even with the slightest sense of injustice in the process of terrorists reintegration and rehabilitation. With such efforts implemented in other climes, the Nigeria’s case poses a unique challenge and commands keen interests by stakeholders and the international community due to the aforementioned reasons. It is therefore pertinent to assess the communities’ level of involvement in the cycle of reintegration- hence, the objective of this paper. Methodologically as a part of my larger PhD thesis, this study intends to explore the three different local governments (Michika in Adamawa, Chibok in Borno, and Yunusari in Yobe), all based on the intensity of terrorists attacks. Twenty five in-depth interview will be conducted in the study locations above featuring religious leaders, Community (traditional) leaders, Internally displaced persons, CSOs management officials, and ex-Boko Haram insurgents who have been reintegrated. The data that will be generated from field work will be analyzed using the Nvivo-12 software package, which will help to code and create themes based on the study objectives. Furthermore, the data will be content-analyzed, employing verbatim quotations where necessary. Ethically, the study will take into consideration the basic ethical principles for research of this nature. It will strictly adhere to the principle of voluntary participation, anonymity, and confidentiality.

Keywords: boko haram, reintegration, rehabilitation, terrorism, victimology

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Authors: Dipanwita Chakravortty

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Officially, the Israel Defence Forces (IDF) follows a policy of 'gender equality and partnership' which institutionalises norms regarding equal duty towards the nation. It reiterates the equality in unbiased opportunities and resources for Jewish men and women to participate in the military as equal citizens. At the same time, as a military institution, the IDF supports gender biases and crystallises the same through various interactions among women soldiers, male soldiers and the institution. These biases are expressed through various stages and processes in the military institution like biased training, discriminatory postings of women soldiers, lack of combat training and acceptance of sexual harassment. The gender-military debates in Israel is largely devoted to female emancipation and converting the militarised women’s experiences into mainstream debates. This critical scholarship, largely female-based and located in Israel, has been consistently critical of the structural policies of the IDF that have led to continued discriminatory practices against women soldiers. This has compelled the military to increase its intake of women soldiers and make its structural policies more gender-friendly. Nonetheless, the continued thriving of gender discrimination in the IDF resulted in scholars looking deep into the failure of these policies in bringing about a change. This article looks into two research objectives, firstly to analyse existing gender relations in the IDF which impact the practices and prejudices in the institution and secondly to look beyond the structural discrimination as part of the gender debates in the IDF. The proposed research uses the structural-functional model as a framework to study the discourses and norms emerging out of the interaction between gender and military as two distinct social institutions. Changing gender-military debates will be discussed in great detail to understanding the in-depth relation between the Israeli society and the military due to the conscription model. The main arguments of the paper deal with the functional aspect of the military service rather than the structural component of the institution. Traditional stereotypes of military institutions along with cultural notions of a female body restrict the complete integration of women soldiers despite favourable legislations and policies. These result in functional discriminations like uneven promotion, sexual violence, restructuring gender identities and creating militarised bodies. The existing prejudices encourage younger women recruits to choose from within the accepted pink-collared jobs in the military rather than ‘breaking the barriers.’ Some women recruits do try to explore new avenues and make a mark for themselves. Most of them face stiff discrimination but they accept it as part of military life. The cyclical logic behind structural norms leading to functional discrimination which then emphasises traditional stereotypes and hampers change in the institutional norms compels the IDF to continue to strive towards gender equality within the institution without practical realisation.

Keywords: women soldiers, Israel Defence Forces, gender-military debates, security studies

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Authors: Stefano Pelaggi

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The research is focused on youth labor and mobility in Berlin. Mobility has become a common denominator in our daily lives but it does not primarily move according to monetary incentives. Labor, knowledge and leisure overlap on this point as cities are trying to attract people who could participate in production of the innovations while the new migrants are experiencing the lifestyle of the host cities. The research will present the project of empirical study focused on Italian workers in the digital industry in Berlin, trying to underline the connection between pleasure, leisure with the choice of life abroad. Berlin has become the epicenter of the European Internet start-up scene, but people suitable to work for digital industries are not moving in Berlin to make a career, most of them are attracted to the city for different reasons. This point makes a clear exception to traditional migration flows, which are always originated from a specific search of employment opportunities or strong ties, usually families, in a place that could guarantee success in finding a job. Even the skilled migration has always been originated from a specific need, finding the right path for a successful professional life. In a society where the lack of free time in our calendar seems to be something to be ashamed, the actors of youth mobility incorporate some categories of experiential tourism within their own life path. Professional aspirations, lifestyle choices of the protagonists of youth mobility are geared towards meeting the desires and aspirations that define leisure. While most of creative work places, in particular digital industries, uses the category of fun as a primary element of corporate policy, virtually extending the time to work for the whole day; more and more people around the world are deciding their path in life, career choices on the basis of indicators linked to the realization of the self, which may include factors like a warm climate, cultural environment. All indicators that are usually eradicated from the hegemonic approach to labor. The interpretative framework commonly used seems to be mostly focused on a dualism between Florida's theories and those who highlight the absence of conflict in his studies. While the flexibility of the new creative industries is minimizing leisure, incorporating elements of leisure itself in work activities, more people choose their own path of life by placing great importance to basic needs, through a gaze on pleasure that is only partially driven by consumption. The multi localism is the co-existence of different identities and cultures that do not conflict because they reject the bind on territory. Local loses its strength of opposition to global, with an attenuation of the whole concept of citizenship, territory and even integration. A similar perspective could be useful to search a new approach to all the studies dedicated to the gentrification process, while studying the new migrations flow.

Keywords: brain drain, digital industry, leisure and gentrification, multi localism

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Authors: Isabelle Gobatto

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Based on an anthropological approach, this paper explores the medical profession and the construction of medical practices by considering the multiform articulations between structural poverty and the production of care from a low-resource francophone West African country, Burkina Faso. This country is considered in its exemplary dimension of culturally differentiated countries of the African continent that share the same situation of structural poverty. The objective is to expose the effects of structural poverty on the ways of constructing professional knowledge and thinking about the sense of the medical profession. If doctors are trained to have the same capacities in South and West countries, which are to treat and save lives whatever the cultural contexts of the practice of medicine, the ways of investing their role and of dealing with this context of action fracture the homogenization of the medical profession. In the line of anthropology of biomedicine, this paper outlines the complex effects of structural poverty on health care, care relations, and the moral economy of doctors. The materials analyzed are based on an ethnography including two temporalities located thirty years apart (1990-1994 and 2020-2021), based on long-term observations of care practices conducted in healthcare institutions, interviews coupled with the life histories of physicians. The findings reveal that disabilities faced by doctors to deliver care are interpreted as policy gaps, but they are also considered by physicians as constitutive of the social and cultural characteristics of patients, making their capacities and incapacities in terms of accompanying caregivers in the production of care. These perceptions have effects on know-how, structured around the need to act even when diagnoses are not made so as not to see patients desert health structures if the costs of care are too high for them. But these interpretations of highly individualizing dimensions of these difficulties place part of the blame on patients for the difficulties in using learned knowledge and delivering effective care. These situations challenge the ethics of caregivers but also of ethnologists. Firstly because the interpretations of disabilities prevent caregivers from considering vulnerabilities of care as constituting a common condition shared with their patients in these health systems, affecting them in an identical way although in different places in the production of care. Correlatively, these results underline that these professional conceptions prevent the emergence of a figure of victim, which could be shared between patients and caregivers who, together, undergo working and care conditions at the limit of the acceptable. This dimension directly involves politics. Secondly, structural poverty and its effects on care challenge the ethics of the anthropologist who observes caregivers producing, without intent to arm, experiences of care marked by an ordinary violence, by not giving them the care they need. It is worth asking how anthropologists could get doctors to think in this light in west-African societies.

Keywords: Africa, care, ethics, poverty

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Authors: Geanderson Eduardo Ambrósio, Dênis Antônio Da Cunha, Marcel Viana Pires

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Historically, human development has been based on economic gains associated with intensive energy activities, which often are exhaustive in the emission of Greenhouse Gases (GHGs). It requires the establishment of targets for mitigation of GHGs in order to disassociate the human development from emissions and prevent further climate change. Brazil presents itself as one of the most GHGs emitters and it is of critical importance to discuss such reductions in intra-national framework with the objective of distributional equity to explore its full mitigation potential without compromising the development of less developed societies. This research displays some incipient considerations about which Brazil’s micro-regions should reduce, when the reductions should be initiated and what its magnitude should be. We started with the methodological assumption that human development and GHGs emissions arise in the future as their behavior was observed in the past. Furthermore, we assume that once a micro-region became developed, it is able to maintain gains in human development without the need of keep growing GHGs emissions rates. The human development index and the carbon dioxide equivalent emissions (CO2e) were extrapolated to the year 2050, which allowed us to calculate when the micro-regions will become developed and the mass of GHG’s emitted. The results indicate that Brazil must throw 300 GT CO2e in the atmosphere between 2011 and 2050, of which only 50 GT will be issued by micro-regions before it’s develop and 250 GT will be released after development. We also determined national mitigation targets and structured reduction schemes where only the developed micro-regions would be required to reduce. The micro-region of São Paulo, the most developed of the country, should be also the one that reduces emissions at most, emitting, in 2050, 90% less than the value observed in 2010. On the other hand, less developed micro-regions will be responsible for less impactful reductions, i.e. Vale do Ipanema will issue in 2050 only 10% below the value observed in 2010. Such methodological assumption would lead the country to issue, in 2050, 56.5% lower than that observed in 2010, so that the cumulative emissions between 2011 and 2050 would reduce by 130 GT CO2e over the initial projection. The fact of associating the magnitude of the reductions to the level of human development of the micro-regions encourages the adoption of policies that favor both variables as the governmental planner will have to deal with both the increasing demand for higher standards of living and with the increasing magnitude of reducing emissions. However, if economic agents do not act proactively in local and national level, the country is closer to the scenario in which emits more than the one in which mitigates emissions. The research highlighted the importance of considering the heterogeneity in determining individual mitigation targets and also ratified the theoretical and methodological feasibility to allocate larger share of contribution for those who historically emitted more. It is understood that the proposals and discussions presented should be considered in mitigation policy formulation in Brazil regardless of the adopted reduction target.

Keywords: greenhouse gases, human development, mitigation, intensive energy activities

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Authors: Tamrat Girma Biru

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Multidrug-resistant tuberculosis (MDR-TB) is defined as resistant to at least Refampicin and Isoniazed: the most two power full TB drugs. It is a leading cause of high rates of morbidity and mortality, and increasing psychosocial challenges to patients, especially when co-infected with Human Immunodeficiency Virus (HIV). Ethiopia faces the highest rates of MDR-TB infection in the world. Objectives: The main objective of this study was to identify the psychosocial challenges of MDR-TB patients, to investigate the extent of the psychosocial challenges on (self-esteem, depression, and stigma) that MDR-TB patients encounter, to examine whether there is a sex difference in experiencing psychosocial challenges and assess the counseling needs of MDR-TB patients. Methodology: A cross-sectional study was conducted at St. Peter TB Specialized Hospital, Addis Ababa on 40 patients (25 males and 15 females) who are hospitalized for treatment. The patients were identified by using purposive sampling and made fill a questionnaire measuring their level of self-esteem, depression and stigma. Besides, data were collected from 16 participants, 28 care providers and 8 guardians, using semi-structured interview. The obtained data were analyzed using SPSS statistical program, descriptive statistics, independent t-test, and qualitative description. Results and Discussion: The results of the study showed that the majority (80%) of the respondents had suffered psychological challenges and social discriminations. Thus, the significance of MDR-TB and its association with HIV/AIDS problems is considered. Besides the psychosocial challenges, various aggravating factors such as length of treatment, drug burden and insecurity in economy together highly challenges the life of patients. In addition, 60% of participants showed low level of self-esteem. The patients also reported that they experienced high self-stigma and stigma by other members of the society. The majority of the participants (75%) showed moderate and severe level of depression. In terms of sex there is no difference between the mean scores of males and females in the level of depression and stigmatization by others and by themselves. But females showed lower level of self-esteem than males. The analysis of the t-test also shows that there were no statistically significant sex difference on the level of depression and stigma. Based on the qualitative data MDR-TB patients face various challenges in their life sphere such as: Psychological (depression, low self value, lowliness, anxiety), social (stigma, isolation from social relations, self-stigmatization,) and medical (drug side effect, drug toxicity, drug burden, treatment length, hospital stays). Recommendations: Based on the findings of this study possible recommendations were forwarded: develop and extend MDR-TB disease awareness creation through by media (printing and electronic), school net TB clubs, and door to door community education. Strengthen psychological wellbeing and social relationship of MDR-TB patients using proper and consistent psychosocial support and counseling. Responsible bodies like Ministry of Health (MOH) and its stakeholders and Non Governmental Organizations (NGOs) need to assess the challenges of patients and take measures on this pressing issue.

Keywords: psychosocial challenges, counseling, multi-drug resistant tuberculosis (MDR-TB), tuberculosis therapy

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Authors: Alicia Ettlin

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Amid the rise of neoliberalism to the leading economic policy model in Western societies in the 1980s, people have started to internalise a neoliberal way of thinking, whereby the human body has become an entity that can and needs to be precisely managed through free yet rational decision-making processes. The neoliberal citizen has consequently become an entrepreneur of the self who is free, independent, rational, productive and responsible for themselves, their health and wellbeing as well as their appearance. The focus on individuals as entrepreneurs who manage their bodies through the rationally thinking mind has, however, become increasingly criticised for viewing the social actor as ‘disembodied’, as a detached, social actor whose powerful mind governs over the passive body. On the other hand, the discourse around embodiment seeks to connect rational decision-making processes to the dominant neoliberal discourse which creates an embodied understanding that the body, just as other areas of people’s lives, can and should be shaped, monitored and managed through cognitive and rational thinking. This perspective offers an understanding of the body regarding its connections with the social environment that reaches beyond the debates around mind-body binary thinking. Hence, following this argument, body management should not be thought of as either solely guided by embodied discourses nor as merely falling into a mind-body dualism, but rather, simultaneously and inseparably as both at once. The descriptive, qualitative analysis of semi-structured in-depth interviews conducted with young Australian amateur athletes between the age of 18 and 24 has shown that most participants are interested in measuring and managing their body to create self-knowledge and self-improvement. The participants thereby connected self-improvement to weight loss, muscle gain or simply staying fit and healthy. Self-knowledge refers to body measurements including weight, BMI or body fat percentage. Self-management and self-knowledge that are reliant on one another to take rational and well-thought-out decisions, are both characteristic values of the neoliberal doctrine. A neoliberal way of thinking and looking after the body has also by many been connected to rewarding themselves for their discipline, hard work or achievement of specific body management goals (e.g. eating chocolate for reaching the daily step count goal). A few participants, however, have shown resistance against these neoliberal values, and in particular, against the precise monitoring and management of the body with the help of self-tracking devices. Ultimately, however, it seems that most participants have internalised the dominant discourses around self-responsibility, and by association, a sense of duty to discipline their body in normative ways. Even those who have indicated their resistance against body work and body management practices that follow neoliberal thinking and measurement systems, are aware and have internalised the concept of the rational operating mind that needs or should decide how to look after the body in terms of health but also appearance ideals. The discussion around the collected data thereby shows that embodiment and the mind/body dualism constitute two connected, rather than two separate or opposing concepts.

Keywords: dualism, embodiment, mind, neoliberalism

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