Search results for: fathers' right to care

Authors: Emma Worley, Mhairi De Sainte Croix, Savneet Lochab, Christopher Roberts, Mark Stroud, Mo Salehan, Kevin Jones

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Awareness about the importance of teaching about diversity at medical school is growing. In the realm of diversity includes discussion around the LGBTQ+ community. At Bristol, diversity is taught in first or second year. However, echoing and expanding that teaching throughout the curriculum is needed. This feeds into the spiral curriculum but also highlights the relevance of the topic. It is well known that some people in the LGBTQ+ community struggle the access healthcare due to previous negative experiences. In 2019, 1 in 7 LGBTQ+ people avoided seeking medical care due to fears about discrimination. If people have fears about seeking medical help, then seeking help from Palliative care when they are at their most vulnerable situation can be even harder. To improve positive healthcare situations for people who identify as LGBTQ+ needs to start with talking. Along with some of our CTAs (clinical teaching assistants) we created a teaching session to explore the barriers faced by LGBTQ+ and incorporated communication stations into this. Our plan is to run this session as a three-hour session first discussing different topics: ethnical diversity, ‘coming out’, LGBTQ+ in the older generation, transgender. This will be followed by looking more closely at the barriers to accessing the hospice. The next part of the session will encompass two or three communication scenarios hopefully prompting further discussion and reflection on ways to improve our communication. The first scenario outline is a gay man/lesbian woman with lung cancer discussing options around the hospice. The second scenario is a transgender person with female genitalia who now has cervical cancer (as was not followed up on pap smears after the change of name). The third scenario is a HIV homosexual male patient who has been admitted with dementia. He has a partner but is not married. His next of kin is down as his parents but his parents do not know about his sexuality and HIV status. It allows discussion around confidentiality as well as broaching the meaning of ‘family’ in the LGBTQ+ community. We have chosen to pitch this teaching session to Bristol Year 4 students. They will be currently doing their 6-week Palliative care block, which fits in well. Each session will have four students attend. We have been lucky enough to have two CTAs (clinical teaching assistants) who identify as LGBTQ+ offer their experiences and help. They have been able to help us with the preparation and delivery of the session. Given anecdotal evidence and stories helps to highlight the importance and relevance of this session. The aim is to increase awareness of some factors that may contribute to people who identify as LGBTQ+ having a negative healthcare experience. By starting to talk about it allows awareness and only then will we be able to start to change and improve. Our aim, if the sessions run well, is to expand these sessions to different academy hospitals. Therefore, all Bristol 4th year students would have the opportunity to take part in the teaching session. We would like to expand our portfolio of case scenarios, to address so tricker topics such as a transgender person with dementia who reverts back to a different gender. We would also like to recruit a diverse range of actors, ideally people who identify as the patient in the scenario does. For example, a transgender person acts the transgender scenario. This would give authenticity and enhance the student’s learning experience.

Keywords: communication skills, healthcare barriers, LGBTQ+, palliative care

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Authors: Mubarak Jan Beebee Zeba Mahetaab, Sumera Bibi Keenoo

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Background: Covid-19 was first reported in Wuhan. On 13th March 2020, WHO declared Covid-19 as a pandemic disease with 140,936 cases globally. The outbreak of covid-19 occurred in over 184 countries, and it created a lot of medical and mental burdens. Aside from the physical problems, the mental health of the medical staff has been of critical concern. Aims and Objectives: To determine the prevalence of burnout among HCW dealing with COVID-19, identify the risk factors and find measures to support their mental health while dealing with the current and future pandemic. Methodology: A cross-sectional study was conducted among the HCW who fought against COVID-19 in SSRN Hospital in Mauritius. The HCWs were recruited using the snowballing sampling technique. Age, gender, job category, income, duration of vacation, working environment and importance of mental health were measured. Results: The prevalence of burnout was highest among HCA. Age had no significant association with pandemic-related burnout. In Mauritius, burnout during the pandemic is linked with lower income and having less vacation days. Conclusion: Burnout is prevalent among healthcare workers working during the Covid-19 Pandemic. Interventions such as psychological counselling, yoga and financial increments need to be implemented to help the healthcare workers.

Keywords: burnout, Covid-19, health care professionals, pandemic

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Authors: Prashant Neupane, Asmi Pandey, Mumna Ehsan, Katie Davies, Richard Lowsby

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Introduction/Background & aims: Safe and effective prescribing in hospitals, directly and indirectly, impacts the health of the patients. Even though digital prescribing in the National Health Service (NHS), UK has been used in lots of tertiary centers along with district general hospitals, a significant number of NHS trusts are still using paper prescribing. We came across lots of irregularities in our daily clinical practice when we are doing paper prescribing. The main aim of the study was to assess how safely and effectively are we prescribing at our hospital where there is no access to digital prescribing. Method/Summary of work: We conducted a prospective audit in the critical care department at Mid Cheshire Hopsitals NHS Foundation Trust in which 20 prescription charts from different patients were randomly selected over a period of 1 month. We assessed 16 multiple categories from each prescription chart and compared them to the standard trust guidelines on prescription. Results/Discussion: We collected data from 20 different prescription charts. 16 categories were evaluated within each prescription chart. The results showed there was an urgent need for improvement in 8 different sections. In 85% of the prescription chart, all the prescribers who prescribed the medications were not identified. Name, GMC number and signature were absent in the required prescriber identification section of the prescription chart. In 70% of prescription charts, either indication or review date of the antimicrobials was absent. Units of medication were not documented correctly in 65% and the allergic status of the patient was absent in 30% of the charts. The start date of medications was missing and alternations of the medications were not done properly in 35%of charts. The patient's name was not recorded in all desired sections of the chart in 50% of cases and cancellations of the medication were not done properly in 45% of the prescription charts. Conclusion(s): From the audit and data analysis, we assessed the areas in which we needed improvement in prescription writing in the Critical care department. However, during the meetings and conversations with the experts from the pharmacy department, we realized this audit is just a representation of the specialized department of the hospital where access to prescribing is limited to a certain number of prescribers. But if we consider bigger departments of the hospital where patient turnover is much more, the results could be much worse. The findings were discussed in the Critical care MDT meeting where suggestions regarding digital/electronic prescribing were discussed. A poster and presentation regarding safe and effective prescribing were done, awareness poster was prepared and attached alongside every bedside in critical care where it is visible to prescribers. We consider this as a temporary measure to improve the quality of prescribing, however, we strongly believe digital prescribing will help to a greater extent to control weak areas which are seen in paper prescribing.

Keywords: safe prescribing, NHS, digital prescribing, prescription chart

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Authors: Barry D. Kyle, Jessica Boyd, Robin Pickersgill, Nicole Squires, Cynthia Balion

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Background-Aim: Fentanyl is a highly-potent synthetic μ-opioid receptor agonist used for exceptional pain management. Its main metabolite, norfentanyl, is typically present in urine at significantly high concentrations (i.e. ~20%) representing an effective targeting molecule for immunoassay detection. Here, we evaluated the NCS^TM One Step Fentanyl Test Device© and the BTNX Rapid Response^TM Single Drug Test Strip© point of care (POC) test strips targeting norfentanyl (20 ng/ml) and fentanyl (100 ng/ml) molecules for potential risperidone interference. Methods: POC tests calibrated against norfentanyl (20 ng/ml) used [immunochromatographic] lateral flow devices to provide qualitative results within five minutes of urine sample contact. Results were recorded as negative if lines appeared in the test and control regions according to manufacturer’s instructions. Positive results were recorded if no line appeared in the test region (i.e., control line only visible). Pooled patient urine (n=20), that screened negative for drugs of abuse (using NCS One Step Multi-Line Screen) and fentanyl (using BTNX Rapid Response Strip) was used for spiking studies. Urine was spiked with risperidone alone and with combinations of fentanyl, norfentanyl and/or risperidone to evaluate cross-reactivity in each test device. Results: A positive screen result was obtained when 8,000 ng/mL of risperidone was spiked into drug free urine using the NCS test device. Positive screen results were also obtained in spiked urine samples containing fentanyl and norfentanyl combinations below the cut-off concentrations when 4000 ng/mL risperidone was present using the NCS testing device. There were no screen positive test results using the BTNX test strip with up to 8,000 ng/mL alone or in combination with concentrations of fentanyl and norfentanyl below the cut-off. Both devices screened positive when either fentanyl or norfentanyl exceeded the cut-off threshold in the absence and presence of risperidone. Conclusion: We report that urine samples containing risperidone may give a false positive result using the NCS One Step Fentanyl Test Device.

Keywords: fentanyl, interferences, point of care test, Risperidone

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Authors: Fardis Teifoori, Mehdi Dehghani, Idoia Postigo, Jorge Martinez

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Introduction: Many skin disorders, such as atopic dermatitis (AD), is characterized by inflammation, infection, and hyperplasia. In this work, keratinocytes from AD patients are used to study the pomegranate seed oil properties for skin care. Material and methods: Isolated keratinocytes from patients with AD were cultured and stimulated by IL-9 (20 ng/ml) and TNF-α (50ng/ml) for 48h to induce vascular endothelial growth factor (VEGF) and Regulated upon activation, normal T cell expressed and secreted (RANTES) production, respectively, in the presence of different concentrations of pomegranate seed oil (20, 50, 100, and 200 µM). Finally, the concentrations of RANTES and VEGF in the cell culture supernatant were quantified according to the standard protocol of commercial ELISA kits. Results: The results indicated that pomegranate seed oil concentrations of 50, 100, and 200 µM could significantly inhibit the production of VEGF and RANTES by stimulating keratinocytes with IL-9 (20 ng/ml) and TNF-α (50ng/ml), respectively. The decrease in VEGF and RANTES concentration in the presence of the pomegranate seed oil concentrations of 20 and 50 uM was not significant. Conclusion: It was concluded that pomegranate seed oil (PSO) counteracts atopic dermatitis conditions dose-dependently: with the highest effect at the concentration of 200 µM. We suggest that the inexpensive and easily available pomegranate seed oil is a good candidate for cosmetics and clinical utilization for skin care.

Keywords: atopic dermatitis, pomegranate, Punica granatum, RANTES, VEGF

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Authors: Zahra Salehi Shahrbabaki, Zahra Chavoshzadeh, Fahimeh Abdollahimajd, Samin Sharafian, Tolue Mahdavi, Mahnaz Jamee

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Background: Inborn errors of immunity (IEIs) are monogenic diseases of the immune the system with broad clinical manifestations. Despite the increasing genetic advancements, the diagnosis of IEIs still leans on clinical diagnosis. Dermatologic manifestations are observed in a large number of IEI patients and can lead to proper approach, prompt intervention and improved prognosis. Methods: This cross-sectional study was carried out between 2018 and 2020 on IEIs at a Children's tertiary care center in Tehran, Iran. Demographic details (including age, sex, and parental consanguinity), age at onset of symptoms and family history of IEI with were recorded. Results :212 patients were included. Cutaneous findings were reported in (95 ,44.8%) patients. and 61 of 95 (64.2%) reported skin lesions as the first clinical presentation. Skin infection (69, 72.6%) was the most frequent cutaneous manifestation, followed by an eczematous rash (24, 25 %). Conclusions: Skin manifestations are common feature in IEI patients and can be readily recognizable by healthcare providers. This study tried to provide information on prognostic consequences.

Keywords: primary immuno deficiency, inborn errror of metabolism, skin manifestation, skin infection

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Authors: N. M. Sani, I. Bitrus, A. M. Sarki, N. S. Mujahid

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Hepatitis is one of the neglected infectious diseases in sub Saharan Africa, and most of the available data is based on blood donors. Health care workers (HCWs) often get infected as a result of their close contact with patients. A cross-sectional study was conducted to determine the prevalence of hepatitis B and C among this group of professionals with a view to improving the quality of care to their patients. Hepatitis B and C infections pose a major public health problem worldwide. While infection is highest in the developing world particularly Asia and sub-Saharan Africa, healthcare workers are at higher risk of acquiring blood-borne viral infections, particularly Hepatitis B and C which are mostly asymptomatic. This study was aimed at determining the prevalence of Hepatitis B and C infections and associated risk factors among health care workers in Dutse Metropolis, Jigawa State - Nigeria. A standard rapid immuno-chromatographic technique i.e. rapid ELISA was used to screen all sera for Hepatitis B surface antigen (HBsAg) and Hepatitis C viral antibody (HCVAb) respectively. Strips containing coated antibodies and antigens to HBV and HCV respectively were removed from the foil. Strips were labeled according to samples. Using a separate disposable pipette, 2 drops of the sample (plasma) were added into each test strip and allowed to run across the absorbent pad. Results were read after 15 minutes. The prevalence of HBV and HCV infection in 100 healthcare workers was determined by testing the plasma collected from the clients during their normal checkup using HBsAg and HCVAb test strips. Results were subjected to statistical analysis using chi-square test. The prevalence of HBV among HCWs was 19 out of 100 (19.0%) and that of HCV was 5 out of 100 (5.0%) where in both cases, higher prevalence was observed among female nurses. It was also observed that all HCV positive cases were recorded among nurses only. The study revealed that nurses are at greater risk of contracting HBV and HCV due to their frequent contact with patients. It is therefore recommended that effective vaccination and other infection control measures be encouraged among healthcare workers.

Keywords: prevalence, hepatitis, viruses, healthcare workers, infection

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Authors: Samira Humaira Habib

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Diabetes has profound effects on individuals and their families. If diabetes is not well monitored and managed, then it leads to long-term complications and a large and growing cost to the health care system. Prevalence and socioeconomic burden of diabetes and relative return of investment for the elimination or the reduction of the burden are much more important regarding its cost burden. Various studies regarding the socioeconomic cost burden of diabetes are well explored in developed countries but almost absent in developing countries like Bangladesh. The main objective of the study is to estimate the total socioeconomic burden of diabetes. It is a prospective longitudinal follow up study which is analytical in nature. Primary and secondary data are collected from patients who are undergoing treatment for diabetes at the out-patient department of Bangladesh Institute of Research & Rehabilitation in Diabetes, Endocrine & Metabolic Disorders (BIRDEM). Of the 2115 diabetic subjects, females constitute around 50.35% of the study subject, and the rest are male (49.65%). Among the subjects, 1323 are controlled, and 792 are uncontrolled diabetes. Cost analysis of 2115 diabetic patients shows that the total cost of diabetes management and treatment is US$ 903018 with an average of US$ 426.95 per patient. In direct cost, the investigation and medical treatment at hospital along with investigation constitute most of the cost in diabetes. The average cost of a hospital is US$ 311.79, which indicates an alarming warn for diabetic patients. The indirect cost shows that cost of productivity loss (US$ 51110.1) is higher among the all indirect item. All constitute total indirect cost as US$ 69215.7. The incremental cost of intensive management of uncontrolled diabetes is US$ 101.54 per patient and event-free time gained in this group is 0.55 years and the life years gain is 1.19 years. The incremental cost per event-free year gained is US$ 198.12. The incremental cost of intensive management of the controlled group is US$ 89.54 per patient and event-free time gained is 0.68 years, and the life year gain is 1.12 years. The incremental cost per event-free year gained is US$ 223.34. The EuroQoL difference between the groups is found to be 64.04. The cost-effective ratio is found to be US$ 1.64 cost per effect in case of controlled diabetes and US$ 1.69 cost per effect in case of uncontrolled diabetes. So management of diabetes is much more cost-effective. Cost of young type 1 diabetic patient showed upper socioeconomic class, and with the increase of the duration of diabetes, the cost increased also. The dietary pattern showed macronutrients intake and cost are significantly higher in the uncontrolled group than their counterparts. Proper management and control of diabetes can decrease the cost of care for the long term.

Keywords: cost, cost-effective, chronic diseases, diabetes care, burden, Bangladesh

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Authors: Aidan N. Smallwood, Celestine R. Weegenaar, Jack N. Evans

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The intensive care unit (ICU) is a particularly resource heavy environment, in terms of staff, drugs and equipment required. Whilst many areas of the hospital are attempting to cut down on plastic use and minimise their impact on the environment, this has proven challenging within the confines of intensive care. Concurrently, as globalization has progressed over recent decades, there has been a tendency towards centralised manufacturing with international distribution networks for products, often covering large distances. In this study, we have modelled the standard consumption of plastic single-use items over the course of the first 24-hours of an average individual patient’s stay in a 12 bed ICU in the United Kingdom (UK). We have identified the country of manufacture and calculated the minimum possible distance travelled by each item from factory to patient. We have assumed direct transport via the shortest possible straight line from country of origin to the UK and have not accounted for transport within either country. Assuming an intubated patient with invasive haemodynamic monitoring and central venous access, there are a total of 52 distincts, largely plastic, disposable products which would reasonably be required in the first 24-hours after admission. Each product type has only been counted once to account for multiple items being shipped as one package. Travel distances from origin were summed to give the total distance combined for all 52 products. The minimum possible total distance travelled from country of origin to the UK for all types of product was 273,353 km, equivalent to 6.82 circumnavigations of the globe, or 71% of the way to the moon. The mean distance travelled was 5,256 km, approximately the distance from London to Mecca. With individual packaging for each item, the total weight of consumed products was 4.121 kg. The CO2 produced shipping these items by air freight would equate to 30.1 kg, however doing the same by sea would produce 0.2 kg CO2. Extrapolating these results to the 211,932 UK annual ICU admissions (2018-2019), even with the underestimates of distance and weight of our assumptions, air freight would account for 6586 tons CO2 emitted annually, approximately 130 times that of sea freight. Given the drive towards cost saving within the UK health service, and the decline of the local manufacturing industry, buying from intercontinental manufacturers is inevitable However, transporting all consumables by sea where feasible would be environmentally beneficial, as well as being less costly than air freight. At present, the NHS supply chain purchases from medical device companies, and there is no freely available information as to the transport mode used to deliver the product to the UK. This must be made available to purchasers in order to give a fuller picture of life cycle impact and allow for informed decision making in this regard.

Keywords: CO2, intensive care, plastic, transport

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Authors: D. Osborn, L. Easthope

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The increasing threat of ‘marauding terror,' utilising improvised explosive devices and firearms, has focused the attention of policy makers and emergency responders once again on the treatment of the critically injured patient in a highly volatile scenario. Whilst there have been significant improvements made in the response and lessons learned from recent disasters in the international disaster community there still remain areas of uncertainty and a lack of clarity in the care of the critically injured. This innovative, longitudinal study has at its heart the aim of using ethnographic methods to ‘slow down’ the journey such patients will take and make visible the ethical complexities that 2017 technologies, expectations and over a decade of improved combat medicine techniques have brought. The primary researcher, previously employed in the hospital emergency management environment, has closely followed responders as they managed casualties with life-threatening injuries. Ethnographic observation of Exercise Unified Response in March 2016, exposed the ethical and legal 'vacuums' within a mass casualty and fatality setting, specifically the extrication, treatment and care of critically injured patients from crushed and overturned train carriages. This article highlights a gap in the debate, evaluation, planning and response to an incident of this nature specifically the incapacitated, unidentified patients and the ethics of submitting them to the invasive ‘Disaster Victim Identification’ process. Using a qualitative ethnographic analysis, triangulating observation, interviews and documentation, this analysis explores the gaps and highlights the next stages in the researcher’s pathway as she continues to explore with emergency practitioners some of this century’s most difficult questions in relation to the medico-legal and ethical challenges faced by emergency services in the wake of new and emerging threats and medical treatment expectations.

Keywords: ethics, disaster, Disaster Victim Identification (DVI), legality, unidentified

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Authors: Lucy Adesomon Okukpon, Margaret Omolara Akerele

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Higher Education in Nigeria is sought after by women, they believe that the economic power and growth lies in the attainment and pursuit of higher Education. No nation in the world can boast of developmental growth when the women are not fully empowered educationally. The attainment of higher education spurs women to contribute meaningfully towards the growth and development of the Nigerian workforce. Recent innovations and trends reveal that over fifty per cent of Nigerian women have attained higher education within and outside the country. Women in Nigeria have expressed their growing concern of what becomes of the remaining 50 per cent who are unable to attain basic education. This concern has brought about the issue of funding which is a practical challenge towards the attainment of education for these vulnerable women. Another challenging factor is that most women often seek the permission of their husbands, brothers, fathers and uncles to enable them attain educational pursuit, especially when the institution is miles away from their place of abode. The solution to this problems from research findings reveal that the umbrella body which co-ordinates education for women in Nigeria (The National Council of Women Societies, NCWS) have taken it upon itself to provide educational learning centres in all the states of the Federation including Abuja the Nations capital city. This is to stem the ugly trend and enable women gain access to educational facilities provided for their growth and development. This positive stride has brought succour to women who hitherto have no hope of attaining any form of education. Moreover, awareness creation concerning higher education is translated into different Nigerian languages so that the women at the grassroots can benefit immensely and contribute towards the growth and development of the Nation. Their educational progress attest to the fact that Nigerian Women are happy for the educational opportunities provided and have vowed to attain greater heights particularly where higher education is concerned.

Keywords: developmental growth, educational attainment, higher education, women in higher education, Nigeria

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Authors: Mariko Nishikawa, Masaaki Yamanaka, Ayami Kondo

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Background: International visitors to Japan are at a risk of travel-related illnesses or injury that could result in hospitalization in a country where the language and customs are unique. Over twelve million international visitors came to Japan in 2015, and more are expected leading up to the Tokyo Olympics. One aspect of this is the potentially greater demand on healthcare services by foreign visitors. Nurses who take care of them have anxieties and concerns of their knowledge of the Japanese health system. Objectives: An effective distribution of travel-health information is vital for facilitating care for international visitors. Our research investigates whether a four-minute digital animation (Mari Info Japan), designed and developed by the authors and applied to a survey of 513 nurses who take care of foreigners daily, could clarify travel health procedures, reduce anxieties, while making it enjoyable to learn. Methodology: Respondents to a survey were divided into two groups. The intervention group watched Mari Info Japan. The control group read a standard guidebook. The participants were requested to fill a two-page questionnaire called Mari Meter-X, STAI-Y in English and mark a face scale, before and after the interventions. The questions dealt with knowledge of health promotion, the Japanese healthcare system, cultural concerns, anxieties, and attitudes in Japan. Data were collected from an intervention group (n=83) and control group (n=83) of nurses in a hospital, Japan for foreigners from February to March, 2016. We analyzed the data using Text Mining Studio for open-ended questions and JMP for statistical significance. Results: We found that the intervention group displayed more confidence and less anxiety to take care of foreign patients compared to the control group. The intervention group indicated a greater comfort after watching the animation. However, both groups were most likely to be concerned about language, the cost of medical expenses, informed consent, and choice of hospital. Conclusions: From the viewpoint of nurses, the provision of travel-health information by digital animation to international visitors to Japan was more effective than traditional methods as it helped them be better prepared to treat travel-related diseases and injury among international visitors. This study was registered number UMIN000020867. Funding: Grant–in-Aid for Challenging Exploratory Research 2010-2012 & 2014-16, Japanese Government.

Keywords: digital animation, health promotion, international visitor, Japan, nurse

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Authors: Anandita Mitro, Archana Srivastava, Bidisha Banerjee

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The present paper attempts to analyze the hierarchy and interconnection of factors responsible for the uptake of BCG vaccination in India. The study uses National Family Health Survey (NFHS-5) data which was conducted during 2019-21. The univariate logistic regression method is used to understand the univariate effects while the interconnection effects have been studied using the Categorical Inference Tree (CIT) which is a non-parametric Machine Learning (ML) model. The hierarchy of the factors is further established using Conditional Inference Forest which is an extension of the CIT approach. The results suggest that BCG vaccination coverage was influenced more by system-level factors and awareness than education or socio-economic status. Factors such as place of delivery, antenatal care, and postnatal care were crucial, with variations based on delivery location. Region-specific differences were also observed which could be explained by the factors. Awareness of the disease was less impactful along with the factor of wealth and urban or rural residence, although awareness did appear to substitute for inadequate ANC. Thus, from the policy point of view, it is revealed that certain subpopulations have less prevalence of vaccination which implies that there is a need for population-specific policy action to achieve a hundred percent coverage.

Keywords: vaccination, NFHS, machine learning, public health

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Authors: Charlotte Bach, Albrecht Jahn, Mahnaz Motamedi, Maryam Karimi-Ghahfarokhi

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Background: Maternal and infant deaths are most prevalent in the first month after birth, emphasizing the critical need for quality healthcare services during this period. Immigrant women, who are more susceptible to adverse pregnancy outcomes, often face neglect in accessing proper healthcare. The lack of adequate postpartum care significantly contributes to mortality rates. Therefore, utilizing maternal health care services and implementing postpartum care is crucial in reducing maternal and child mortality. Aims: This study aims to evaluate the assessment of pre- and postnatal care among women with and without migration background. In addition, the study explores the impact of COVID-19 procedures on women's experiences during pregnancy, birth, and the postpartum period. Methods: This research employs a cross-sectional Mixed-Method design. Data collection was facilitated through structured questionnaires administered to participants, alongside the utilization of patient bases, including Maternity and child medical records. Following the assumption that the investigator aimed to gain comprehensive insights, qualitative sampling focused on individuals with substantial experiences related to COVID-19, regarded as rich cases. Results: our study highlighted the influence of educational level, marital status, and consensual partnerships on the likelihood of Cesarean deliveries. Regarding breastfeeding practices, migrant women exhibited higher rates of breastfeeding initiation and continuation. Contraception utilization revealed interesting patterns, with non-migrants displaying higher odds of contraceptive use. The qualitative component of our research adds depth to the exploration of women's experiences during the COVID-19 pandemic, revealing nuanced challenges related to anxiety, hospital restrictions, breastfeeding support, and postnatal ward routines. Conclusion: Dissimilarity among studies toward cesarean rate between migrants and non-migrants underscores the importance of targeted interventions considering the diverse needs of distinct population groups. It also acknowledges potential cultural, contextual, and healthcare system influences on the association between mode of delivery and infant feeding practices. Studies acknowledge the influence of contextual variables on contraceptive preferences among migrants and non-migrants, emphasizing the need for tailored healthcare policies. The findings contribute to existing research, highlighting the need for a nuanced understanding of the impact of birth preparation courses on maternal and infant outcomes. Furthermore, they emphasize the universality of certain maternity care experiences, regardless of pandemic contexts, reinforcing the importance of patient-centred approaches in healthcare delivery.

Keywords: migration background, pregnancy outcome, covid-19, postpartum

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Authors: Duane Booysen, Ashraf Kagee

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There is a high prevalence of violent crime and trauma exposure in South African society. Considering the prevalence of continuous violent crimes and traumatization in South Africa, the public mental health sector is required to combat the burgeoning effect of traumatic stress in South Africa. Trauma counselors, especially, provide important mental health services at primary health care to persons affected by traumatic events. Therefore, the evaluation and implementation of evidence-based trauma therapies is essential at a primary health care level in treating traumatic stress. A single-case design was used to evaluate the treatment effect of a Brief Trauma Treatment Programme treating persons who present with symptoms of posttraumatic stress disorder at a primary care trauma centre in Cape Town, South Africa. The sample consisted of six adult participants who presented with symptoms of posttraumatic stress and were assessed at baseline, during treatment, post-intervention and at 3-month follow. All participants received six sessions of trauma therapy. Assessment measures included the posttraumatic stress disorder symptom scale interviews for Diagnostic and Statistical Manual fifth edition (DSM5), the posttraumatic disorder checklist for DSM5, Beck Depression Inventory and Beck Anxiety Inventory. Results demonstrate that participants had noticeable reduced symptoms for traumatic stress, anxiety and depression despite living in contexts of violent crime and trauma. In conclusion, the article critically reflects on the need to evaluate and implement evidence-based treatments for the South African context, and how evidence-based treatments are used in developing socio-economic and cultural diverse contexts with continuous levels of violence and traumatization.

Keywords: psychological interventions, public mental health, traumatic stress, single-case design

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Authors: Zakaria Mowafy Emam Mowafy, Hamed Abd Allah Hamed, Marwa Mahmoud Abd-Elmotalb, Andrew Anis Fakhray Mosaad

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The purpose of this paper is to determine the efficacy of polarized light therapy for chemotherapy-treated cancer patients who have oral mucositis. Methods of evaluation are the measurement of the WHO oral mucositis scale and the common toxicity criteria scale. Methods: Thirty cancer patients receiving chemotherapy (males and females) who had oral mucositis and ulceration pain, and their ages ranged from 30 to 55 years, were divided into two groups. Group (A), composed of 15 patients, received the Bioptron light therapy (BLT) in addition to the routine medical care of oral mucositis. Group (B) received only the routine medical care of oral mucositis; the duration of the BLT application was 10 minutes applied daily for 30 days. Results and conclusion: Results showed that the application of the BLT had valuable healing effects on oral mucositis in cancer patients receiving chemotherapy, as evidenced by the high decreases of the WHO oral mucositis scale and the common toxicity criteria scale.

Keywords: Bioptron light therapy, oral mucositis, WHO oral mucositis scale, common toxicity criteria scale

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Authors: D. Muyama, M. Luyiga, P. Buyungo, D. Chemonges, M. Namukwaya, L. Ssekabembe, B. Lukwago, D. Kyamagwa

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Context: The study focuses on the sustainability of health interventions in Uganda, particularly in the private sector, beyond donor-funded project periods. The Population Services International (PSI) implemented the Women Health Project (WHP) to ensure continued access to quality family planning, cervical cancer screening, and post-abortion care services through private clinics. Research Aim: The aim of the study is to assess the continued access to quality family planning, cervical cancer screening, and post-abortion care services through the private sector after the closure or reduction in funding of the WHP. Methodology: PSI trained and mentored 83 clinics to establish functional systems in self-regulatory quality improvement, supply chain, referral, and demand creation. The clinics were also connected to the national reporting system and utilized Ministry of Health reporting tools. An assessment tool with six criteria was designed and used to evaluate the progress of the clinics. Clinics scoring 75% and above were considered independent and graduated from the program. Findings: Out of the 83 private clinics, 56 successfully met the graduation criteria and graduated from the program, while 25 lost interest and were gradually dropped. Two clinics failed to achieve the criteria due to leadership challenges. The 59 graduating clinics continued to provide high-quality family planning services, including IUD, implant, Depo-Provera, oral contraceptives, and post-abortion care. All graduating clinics were reassessed and found to still be capable of offering services, attributing their success to government stock availability and acquired skills through mentorships. The clinics expressed appreciation to PSI for the sustainable plan that allowed them to operate beyond the project period. Theoretical Importance: This study contributes to the understanding of sustainability planning and the importance of clinic owners' attitudes and buy-in for continued service provision. It emphasizes the implementation of sustainability plans through existing structures to leverage available resources and ensure continuity of care. Data Collection and Analysis Procedures: The study collected data through the assessment tool that evaluated the progress of clinics based on the established criteria. The tool was scored out of 100%, and clinics scoring above 75% were deemed independent. The findings were analyzed quantitatively to determine the success rate of clinics in meeting the graduation criteria. Questions Addressed: The study addresses the question of whether private clinics in Uganda can sustain the provision of family planning, cervical cancer screening, and post-abortion care services after the closure or reduction in funding of the WHP. Conclusion: The study concludes that the attitude and buy-in of clinic owners are essential for sustainability planning. Implementing sustainability plans through existing structures and leveraging available resources are crucial for the continuity of care after the end of a project or reduced funding. The findings highlight the importance of establishing sustainable plans to ensure continued access to essential health services beyond the project period. Contributions: This study contributes to the existing knowledge for programmers implementing or intending to implement donor-funded projects. It provides insights into designing sustainable plans that enable the independent operation of clinics even after the end of a project.

Keywords: graduation, family planning, systems strengthening, sustainability

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Authors: Vered Shenaar-Golan, Nava Wald, Uri Yatzkar

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Background: Parenting children with mental health problems poses multiple challenges, including coping with difficult behavior and negative child emotions. The impact on parents includes financial strain, negative social stigma, and negative feelings of guilt or blame, resulting in significant stress and lower levels of well-being. Given findings that self-compassion plays a significant role in reducing stress and improving well-being, the current study examined the role of self-compassion in the experience of parents raising a child with mental health problems. The study tested (1) whether child behavioral/emotional problem severity is associated with higher parental stress and lower parental well-being; (2) whether self-compassion is associated with lower parental stress and higher parental well-being; and (3) whether self-compassion is a stronger predictor of parental stress and well-being than child behavioral/emotional problem severity. Methods: Three hundred and six mothers and two hundred and fifty-six fathers of children attending a hospital child and adolescent psychiatric center were assessed at admission. Consenting parents completed four questionnaires: Child Strength and Difficulty – parent version, Self-compassion, Parent Feeling Inventory, and Well-Being. Results: Child behavioral/emotional problem severity was associated with higher parental stress and lower parental well-being, and self-compassion was a stronger predictor of parental stress and well-being levels than child behavioral/emotional problem severity. For children with internalizing but not externalizing behavioral/emotional problems, parental self-compassion was the only predictor of parental well-being beyond the severity of child behavioral/emotional problems. Conclusions: Cultivating self-compassion is important in reducing parental stress and increasing parental well-being, particularly with internalizing presentations, and should be considered when designing therapeutic interventions for parents.

Keywords: parenting children with mental health problems, self-compassion, parental stress, feelings, well-being

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Authors: Sylvia Acquah

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The assumption that social enterprises are empowering has strong theoretical support, but empirical verification is anecdotal at best. Social enterprises blend social goal with an enterprising idea and therefore in theory these enterprises should provide meaningful jobs that are empowering. Whether jobs created are meaningful, or whether these organizations are practicing social entrepreneurship remains unexplored key questions. This paper addresses these key questions through a comprehensive literature review and an ethnographical study of a Domiciliary Home Care Social Enterprise in the UK. The social entrepreneurs, management and 9 staff members were observed, interviewed and achieves were reviewed and analyzed. In this study, the social entrepreneur’s vision was lost in transition during management change and the organization was only identified as a social enterprise by name. The organization that was set up to tackle lack of continuity in care and create a family of independent carers, was eventually closed down overnight and subjected to investigation by social services and the local council. Also, the ineffectiveness of the organization led to staff being stressed and without the support of the management to help rectify the issues; staff started displaying symptoms of burnout. Social enterprise managers should not only focus on profit maximization or generation, but should equally live up to the core tenets of the enterprise and effectively communicate and gain buy-in of all employees for any changes. Further, there ought to be an independent organization that regulates social enterprises to ensure that they are adhering to their social goals.

Keywords: ethnography, carer, social, enterprise

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Authors: Shahadat Uddin, Md Ekramul Hossain, Arif Khan

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The collaboration among physicians during episodes of care for a hospitalised patient has a significant contribution towards effective health outcome. This research aims at improving this health outcome by analysing the attributes of patient-sharing physician collaboration network (PCN) on hospital data. To accomplish this goal, we present a research framework that explores the impact of several types of attributes (such as clique and clan) of PCN on hospitalisation cost and hospital length of stay. We use electronic health insurance claim dataset to construct and explore PCNs. Each PCN is categorised as ‘low’ and ‘high’ in terms of hospitalisation cost and length of stay. The results from the proposed model show that the clique and clan of PCNs affect the hospitalisation cost and length of stay. The clique and clan of PCNs show the difference between ‘low’ and ‘high’ PCNs in terms of hospitalisation cost and length of stay. The findings and insights from this research can potentially help the healthcare stakeholders to better formulate the policy in order to improve quality of care while reducing cost.

Keywords: clique, clan, electronic health records, physician collaboration

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Authors: Alene Toulany, Elizabeth Dettmer, Seena Grewal, Kaley Roosen, Andrea Regina, Cathleen Steinegger, Kate Stadelman, Melissa Chambers, Lindsay Lochhead, Kelsey Gallagher, Alissa Steinberg, Andrea Leyser, Allison Lougheed, Jill Hamilton

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Obesity and psychiatric disorders occur together so frequently that the combination has been coined an epidemic within an epidemic. Youth living with obesity are at increased risk for trauma, depression, anxiety and disordered eating. Although symptoms of binge eating disorder are common in paediatric obesity management programs, they are often not identified or addressed within treatment. At The Hospital for Sick Children (SickKids), a tertiary care paediatric hospital in Toronto, Canada, adolescents with obesity are treated in an interdisciplinary outpatient clinic (1-2 hours/week). This intensity of care is simply not enough to help these extremely complex patients. Existing day treatment programs for eating, and psychiatric disorders are not well suited for patients with obesity. In order to address this identified care gap, a unique collaboration was formed between the obesity, psychiatry, and eating disorder programs at SickKids in 2015. The aim of this collaboration was to provide an enhanced treatment arm to our general psychiatry day hospital program that addresses both the mental health issues and the lifestyle challenges common to youth with obesity and binge eating. The program is currently in year-one of a two-year pilot project and is designed for a length of stay of approximately 6 months. All youth participate in daily group therapy, academics, and structured mealtimes. The groups are primarily skills-based and are informed by cognitive/dialectical behavioural therapies. Weekly family therapy and individual therapy, as well as weekly medical appointments with a psychiatrist and a nurse, are provided. Youth in the enhanced treatment arm also receive regular sessions with a dietitian to establish normalized eating behaviours and monthly multifamily meal sessions to address challenges related to behaviour change and mealtimes in the home. Outcomes that will be evaluated include measures of mental health, anthropometrics, metabolic status, and healthcare satisfaction. At the end of the two years, it is expected that we will have had about 16 youth participants. This model of care delivery will be the first of its kind in Canada and is expected to inform future paediatric treatment practices.

Keywords: adolescent, binge eating, mental illness, obesity

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Authors: Manar Ahmed Elbadawy

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Background: Empirical evidence suggested that improving nursing teamwork (NTW) may be the key to reducing medical error. The functioning nursing teams require open communication, mutual respect, and shared mental models to activate quality patient care. The complexity and the high demands for specialized nursing knowledge and skill also require nursing staff to consult with one another and work in teams regularly. The current study aimed to evaluate the effect of the nursing teamwork training program on nursing teamwork effectiveness. Design: A quasi-experimental (one group pretest-posttest) design was utilized. Three medical intensive care units at a teaching hospital affiliated to Cairo University Hospital, Egypt. Subjects: A convenient sample of 48 nursing staff worked at the selected units. The Nursing Teamwork Observational Checklist was used. Results: Total (NTW) mean scores exhibited quite elevation post-program implementation compared to preprogram and showed little decrease 3 months later ( = 2.52, SD = ± 0.27, mean % =51.98, = 2.72, SD = ± 0.20, mean %=72.45, = 2.67, SD = ± 0.11, mean %= 67.48 respectively). Conclusion: Implementation of (NTW) training program had a positive effect on increasing (NTW) effectiveness. Regular and frequent short-term teamwork training is important to be introduced as well as sustainable monitoring is required to ensure nursing attitudes, knowledge and skills’ change about teamwork effectiveness.

Keywords: effectiveness, nursing, teamwork, training

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Authors: Zohre Shahhosseini, Mehdi Pourasghar, AliReza Khalilian, Fariba Salehi

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Objective: The prevalence of anxiety during pregnancy, particularly in developing countries, and its adverse effects on mother and baby, can make pregnancy unpleasant for pregnant women. The effect of anxiety during pregnancy on birth outcomes and children can be a justification for screening of anxious pregnant women in periodic pregnancy care and helping them. In this study, researchers have investigated effects and comparison of group counseling (Cognitive therapy) and interactive lectures on anxiety during pregnancy of primiparas. Methods: The population studied in this semi-experimental trail was nulliparous pregnant women with backgrounds in health care centers in Sari city .They were studied during a period of 3 months from early March to end May 2016. Sample size in this study was 91 patients, who were randomly assigned to three groups: group counseling, interactive lecture, and control group. Demographic questionnaire and Speilberger State –Trait Anxiety Inventory (SPAI) was completed for all three groups after obtaining letter of consent and completing the initial checklist. Then interventions included 4 sessions for group counseling and 4 sessions for interactive lecture which were implemented in two sessions a week. 4 weeks after interventions, Speilberger State – Trait Anxiety Inventory (SPAI), completed by both group counseling and interactive lectures groups again. In control group, the second questionnaire was also completed 4 weeks after completing the initial questionnaire. Data analysis was performed using spss software version 18. At first, the Kalmogorov-Smiranov test was carried out and then chi square tests, Independent t-test, paired t-test, ANOVA test, and Dunnett's post hoc test were applied. Results: Findings show that group counseling and interactive lecture with reducing state and trait anxiety in significant level of P=0/000 contribute to reduction of anxiety in nulliparous pregnant mothers. However, in this study, group counseling was more effective than an interactive lecture in reducing participants' anxiety, but this difference was not significant (P≥0/05). Conclusions: According to the results of this study, it is suggested that by screening of psychological - mental problems of pregnant women in periodic care during pregnancy be considered by revised prenatal care plans and creation of counseling and training units at health centers. Besides owing to the fact that both interactive lecture and group counseling method were effective in reducing anxiety, these methods should be used proportionate to situations and facilities.

Keywords: anxiety, group counseling, cognitive therapy, interactive lecture, nulliparous

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Authors: F. Marchini, A. Caputo, J. Balonan, F. Fedele, A. Napoli, V. Langher

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Aim: The present study aims to explore the specific role of defense mechanisms in persons with type 2 diabetes mellitus in treatment adherence. Materials and methods: A correlational study design was employed. Thirty-two persons with type 2 diabetes mellitus were enrolled and assessed with Defense Mechanism Inventory, Beck Depression Inventory-II, Toronto Alexithymia Scale and Self-Care Inventory-Revised. Bivariate correlation and two-step regression analyses were performed. Results: Treatment adherence negatively correlates with hetero-directed hostility (r= -.537; p < .01), whereas it is positively associated with principalization (r= .407; p < .05). These two defense mechanisms overall explain an incremental variance of 26.9% in treatment adherence (ΔF=4.189, df1=2, df2 =21, p < .05), over and above the control variables for depression and alexithymia. However, only higher hetero-directed hostility is found to be a solid predictor of a decreased treatment adherence (β=-.497, p < .05). Conclusions: Despite providing preliminary results, this pilot study highlights the original contribution of defense mechanisms in adherence to type 2 diabetes regimens. Specifically, hetero-directed hostility may relate to an unconscious process, according to which disease-related painful feelings are displaced onto care relationships with negative impacts on adherence.

Keywords: alexithymia, defense mechanisms, treatment adherence, type 2 diabetes mellitus

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Authors: Georgia Mills, Rachel Parsonage

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Thrombocytosis is a platelet count above the upper limit of the normal range. An urgent referral is advised for counts over 1000 x109 and if the count is between 600-1000 x109 with certain conditions/age. A non-urgent referral is warranted when the level is above 450 × 109/L (for more than 3 months) or over 600 × 109/L on at least two occasions (4–6 weeks apart) or within the range 450–600 × 109/L with other haematological abnormalities. The aim of this audit is the assess how well Roseneath's general practice has adhered to the National Institute for Health and Care Excellence (NICE) guidelines for investigations and management of high platelet counts. Through the filtering tool on Vision, all blood results in the surgery were filtered to only show those with a platelet count above 450 x 109 /L. These patients were then analyzed individually to see where they fall on the current NICE guidance pathway for management. The investigations and management of thrombocytosis were generally poor. 60% of those who needed an urgent referral did not have it done. 30% of those who needed a follow-up blood test did not have it done. 60% of those needing a routine referral from complete investigations did not have it done. To improve the knowledge of NICE guidelines within the practice, a teaching session was delivered. Percentages then reached 100% in the 2nd audit. There is a lack of awareness of guidelines and education on thrombocytosis in primary care. Teaching sessions will benefit outcomes greatly

Keywords: platelets, thrombocytosis, management, referral

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Authors: Salehah Tahkin, Norlaila Mustafa, Dayang Anita Abdul Aziz

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Knowledge of medical ethics is important to all practitioners so the best care can be delivered to all patients through safe practice. Surgeons are not exceptions to this. Knowledge, attitude, and practice (KAP) of medical ethics among paediatric surgeons and trainees in Malaysia has not been evaluated before. This study aims to determine the level of KAP regarding medical ethics among these groups. This was a cross-sectional study involving three groups of samples, i.e., paediatric surgeons (PS), paediatric surgical trainees (PST), and medical officers with a special interest in paediatric surgery (MO). A validated KAP questionnaire was used. Standard formulas were used to calculate objective indexes for measuring KAP, which were then compared for statistical significance across different sample groups; p less than 0.05 is taken as significant. The index is rated into 5 classes using a score of 0 to 10, i.e., poor (1-2.99), fair (3-4.99), good (5-6.99), very good (7-8.99), and excellent (9-10). There were 117 samples, i.e., PS n=45 (38.5%), PST n=25 (21.3%), and MO n=47 (40.2%). For knowledge, all three groups display a good index score (mean score of 5.44). For attitude, PS and MO also display an index score of good (mean score of 5.81), while the PST index score was fair (4.82). For practice, our study shows a highest score of 7.14 (very good) among PST. However, these differences were not statistically significant (p> 0.05). Conclusion: Training in paediatric surgery must continue to emphasize professionalism and medical ethics education to deliver the best health care services.

Keywords: KAP, medical ethics, paediatric, surgeons, trainees

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Authors: Natalie Tyldesley-Marshall, Janette Parr, Anna Brown, Yen-Fu Chen, Amy Grove

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It is widely recognised in policy and research that the provision of services for children and young people (CYP) with Special Educational Needs and Disabilities (SEND) is enhanced when health and social care, and education services collaborate and interact effectively. In the UK, there have been significant changes to policy and provisions which support and improve collaboration. However, professionals responsible for implementing these changes face multiple challenges, including a lack of specific implementation guidance or framework to illustrate how effective multi-agency working could or should work. This systematic review will identify the key components of effective multi-agency working in services for CYP with SEND; and the most effective forms of partnership working in this setting. The review highlights interventions that lead to service improvements; and the conditions in the local area that support and encourage success. A protocol was written and registered with PROSPERO registration: CRD42022352194. Searches were conducted on several health, care, education, and applied social science databases from the year 2012 onwards. Citation chaining has been undertaken, as well as broader grey literature searching to enrich the findings. Qualitative, quantitative, mixed methods studies and systematic reviews were included, assessed independently, and critically appraised or assessed for risk of bias using appropriate tools based on study design. Data were extracted in NVivo software and checked by a more experienced researcher. A convergent segregated approach to synthesis and integration was used in which the quantitative and qualitative data were synthesised independently and then integrated using a joint display integration matrix. Findings demonstrate the key ingredients for effective partnership working for services delivering SEND. Interventions deemed effective are described, and lessons learned across interventions are summarised. Results will be of interest to educators and health and social care professionals that provide services to those with SEND. These will also be used to develop policy recommendations for how UK healthcare, social care, and education services for CYP with SEND aged 0-25 can most effectively collaborate and achieve service improvement. The review will also identify any gaps in the literature to recommend areas for future research. Funding for this review was provided by the Department for Education.

Keywords: collaboration, joint commissioning, service delivery, service improvement

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Authors: Roshanim Koris, Norashidah Mohamed Nor, Sharifah Azizah Haron, Normaz Wana Ismail, Syed Mohamed Aljunid Syed Junid, Amrizal Muhammad Nur, Asrul Akmal Shafie, Suraya Yusuff, Namaitijiang Maimaiti

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An ageing population has huge implications for virtually every aspect of Malaysian societies. The elderly consume a greater volume of healthcare facilities not because they are older, but because of they are sick. The chronic comorbidities and deterioration of cognitive ability would lead the elderly’s health to become worst. This study aims to provide a comprehensive estimate of the direct and indirect costs of health care used in a nationally representative sample of community-dwelling elderly with dementia and as well as the determinants of healthcare cost. A survey using multi-stage random sampling techniques recruited a final sample of 2274 elderly people (60 years and above) in the state of Johor, Perak, Selangor and Kelantan. Mini Mental State Examination (MMSE) score was used to measure the cognitive capability among the elderly. Only the elderly with a score less than 19 marks were selected for further analysis and were classified as dementia. By using a two-part model findings also indicate household income and education level are variables that strongly significantly influence the healthcare cost among elderly with dementia. A number of visits and admission are also significantly affect healthcare expenditure. The comorbidity that highly influences healthcare cost is cancer and seeking the treatment in private facilities is also significantly affected the healthcare cost among the demented elderly. The level of dementia severity is not significant in determining the cost. This study is expected to attract the government's attention and act as a wake-up call for them to be more concerned about the elderly who are at high risk of having chronic comorbidities and cognitive problems by providing more appropriate health and social care facilities. The comorbidities are one of the factor that could cause dementia among elderly. It is hoped that this study will promote the issues of dementia as a priority in public health and social care in Malaysia.

Keywords: ageing population, dementia, elderly, healthcare cost, healthcare utiliztion

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Authors: Katarzyna Kamińska

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Joint physical custody means that both parents after divorce or separation have the right and responsibility to take care of the child on the daily basis. In a joint physical custody arrangement, the child spends substantial, but not necessarily equal, time with both parents. Joint physical custody can be symmetric care arrangement or not. However, it is accepted in the jurisprudence that the best interests of the child is served when the child spends at least 35% of the time during a two-week period with each parent. Joint physical custody, also known as joint, dual, or shared residence, is a challenge in contemporary family law. It has its supporters and opponents. On the one hand, joint physical custody is beneficial because it provides children with frequent and continuous contact with a mother and father after their divorce or separation. On the other hand, it isn’t good for children to be shuttled back and forth between two residences. Children need a home base. The conclusion is therefore that joint physical custody can’t be seen as a panacea for all post-divorce or post-separation parenting cases and the court shouldn’t automatically make such a determination. The possibility to award this arrangement requires the court to carefully weigh the pros and cons of each individual case. It is difficult to say that joint physical custody is better than single physical custody in any case. It depends on the circumstances and needs of each family. It appears that an individual approach is going to be much better as opposed to a one-size-fits-all idea.

Keywords: joint physical custody, shared residence, dual residence, the best interests of the child

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Authors: Aneal Khan, Elleine Allapitan, Desmond Koo, Katherine-Ann Piedalue, Shaneel Pathak, Utkarsh Subnis

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Background: Disease management of metabolic, genetic disorders is long-term and can be cumbersome to patients and caregivers. Patient-Reported Outcome Measures (PROMs) have been a useful tool in capturing patient perspectives to help enhance treatment compliance and engagement with health care providers, reduce utilization of emergency services, and increase satisfaction with their treatment choices. Currently, however, PROMs are collected during infrequent and decontextualized clinic visits, which makes translation of patient experiences challenging over time. The GRIT study aims to evaluate a digital health journal application called Zamplo that provides a personalized health diary to record self-reported health outcomes accurately and efficiently in patients with metabolic, genetic disorders. Methods: This is a randomized controlled trial (RCT) (1:1) that assesses the efficacy of Zamplo to increase patient activation (primary outcome), improve healthcare satisfaction and confidence to manage medications (secondary outcomes), and reduce costs to the healthcare system (exploratory). Using standardized online surveys, assessments will be collected at baseline, 1 month, 3 months, 6 months, and 12 months. Outcomes will be compared between patients who were given access to the application versus those with no access. Results: Seventy-seven patients were recruited as of November 30, 2021. Recruitment for the study commenced in November 2020 with a target of n=150 patients. The accrual rate was 50% from those eligible and invited for the study, with the majority of patients having Fabry disease (n=48) and the remaining having Pompe disease and mitochondrial disease. Real-time clinical responses, such as pain, are being measured and correlated to disease-modifying therapies, supportive treatments like pain medications, and lifestyle interventions. Engagement with the application, along with compliance metrics of surveys and journal entries, are being analyzed. An interim analysis of the engagement data along with preliminary findings from this pilot RCT, and qualitative patient feedback will be presented. Conclusions: The digital self-care journal provides a unique approach to disease management, allowing patients direct access to their progress and actively participating in their care. Findings from the study can help serve the virtual care needs of patients with metabolic, genetic disorders in North America and the world over.

Keywords: eHealth, mobile health, rare disease, patient outcomes, quality of life (QoL), pain, Fabry disease, Pompe disease

Procedia PDF Downloads 142