Search results for: home healthcare

Authors: Suteera Pradubwong, Pattama Surit, Sumalee Pongpagatip, Tharinee Pethchara, Bowornsilp Chowchuen

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Background: Cleft lip and palate (CLP) is a congenital anomaly of the lip and palate that is caused by several factors. It was found in approximately one per 500 to 550 live births depending on nationality and socioeconomic status. The Tawanchai Center and out-patients surgical room of Srinagarind Hospital are responsible for providing care to patients with CLP (starting from birth to adolescent) and their caregivers. From the observations and interviews with nurses working in these units, they reported that both patients and their caregivers confronted many problems which affected their physical and mental health. Based on the Soukup’s model (2000), the researchers used evidence triggers from clinical practice (practice triggers) and related literature (knowledge triggers) to investigate the problems. Objective: The purpose of this study was to investigate the problems of care for patients with CLP in the Tawanchai Center and out-patient surgical room of Srinagarind Hospital. Material and Method: The descriptive method was used in this study. For practice triggers, the researchers obtained the data from medical records of ten patients with CLP and from interviewing two patients with CLP, eight caregivers, two nurses, and two assistant workers. Instruments for the interview consisted of a demographic data form and a semi-structured questionnaire. For knowledge triggers, the researchers used a literature search. The data from both practice and knowledge triggers were collected between February and May 2016. The quantitative data were analyzed through frequency and percentage distributions, and the qualitative data were analyzed through a content analysis. Results: The problems of care gained from practice and knowledge triggers were consistent and were identified as holistic issues, including 1) insufficient feeding, 2) risks of respiratory tract infections and physical disorders, 3) psychological problems, such as anxiety, stress, and distress, 4) socioeconomic problems, such as stigmatization, isolation, and loss of income, 5)spiritual problems, such as low self-esteem and low quality of life, 6) school absence and learning limitation, 7) lack of knowledge about CLP and its treatments, 8) misunderstanding towards roles among the multidisciplinary team, 9) no available services, and 10) shortage of healthcare professionals, especially speech-language pathologists (SLPs). Conclusion: From evidence-triggers, the problems of care affect the patients and their caregivers holistically. Integrated long-term care by the multidisciplinary team is needed for children with CLP starting from birth to adolescent. Nurses should provide effective care to these patients and their caregivers by using a holistic approach and working collaboratively with other healthcare providers in the multidisciplinary team.

Keywords: evidence-triggers, cleft lip, cleft palate, problems of care

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Authors: Kedar J. Mahadeshwar

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Concept introduction: This paper talks about how an innovative cloud based analytics enabled solution that could address a major industry challenge that is approaching all of us globally faster than what one would think. The world of supply chain for drugs and devices is changing today at a rapid speed. In the US, the Drug Supply Chain Security Act (DSCSA) is a new law for Tracing, Verification and Serialization phasing in starting Jan 1, 2015 for manufacturers, repackagers, wholesalers and pharmacies / clinics. Similarly we are seeing pressures building up in Europe, China and many countries that would require an absolute traceability of every drug and device end to end. Companies (both manufacturers and distributors) can use this opportunity not only to be compliant but to differentiate themselves over competition. And moreover a country such as UAE can be the leader in coming up with a global solution that brings innovation in this industry. Problem definition and timing: The problem of counterfeit drug market, recognized by FDA, causes billions of dollars loss every year. Even in UAE, the concerns over prevalence of counterfeit drugs, which enter through ports such as Dubai remains a big concern, as per UAE pharma and healthcare report, Q1 2015. Distribution of drugs and devices involves multiple processes and systems that do not talk to each other. Consumer confidence is at risk due to this lack of traceability and any leading provider is at risk of losing its reputation. Globally there is an increasing pressure by government and regulatory bodies to trace serial numbers and lot numbers of every drug and medical devices throughout a supply chain. Though many of large corporations use some form of ERP (enterprise resource planning) software, it is far from having a capability to trace a lot and serial number beyond the enterprise and making this information easily available real time. Solution: The solution here talks about a service provider that allows all subscribers to take advantage of this service. The solution allows a service provider regardless of its physical location, to host this cloud based traceability and analytics solution of millions of distribution transactions that capture lots of each drug and device. The solution platform will capture a movement of every medical device and drug end to end from its manufacturer to a hospital or a doctor through a series of distributor or retail network. The platform also provides advanced analytics solution to do some intelligent reporting online. Why Dubai? Opportunity exists with huge investment done in Dubai healthcare city also with using technology and infrastructure to attract more FDI to provide such a service. UAE and countries similar will be facing this pressure from regulators globally in near future. But more interestingly, Dubai can attract such innovators/companies to run and host such a cloud based solution and become a hub of such traceability globally.

Keywords: cloud, pharmaceutical, supply chain, tracking

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Authors: Sheryl Bernardo-Hinesley

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Heritage language learners are students who have been raised in a home where a minority language is spoken, who speaks or merely understand the minority heritage language, but to some degree are bilingual in the majority and the heritage language. In view of the rising university enrollment by Hispanics in the United States who have chosen to study Spanish, university language programs are currently faced with challenges of accommodating the language needs of heritage language learners of Spanish. The present study investigates the heritage language perception and language attitudes by heritage language learners of Spanish, as well as their classroom language learning experiences and needs. In order to carry out the study, a qualitative survey was used to gather data from university students. Analysis of students' responses indicates that heritage learners are motivated to learn the heritage language. In relation to the aspects of focus of a language course for heritage learners, results show that the aspects of interest are accent marks and spelling, grammatical accuracy, vocabulary, writing, reading, and culture.

Keywords: heritage language learners, language acquisition, linguistic attitudes, Spanish in the US

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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

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Authors: Elaheh Ezami, Behzad Mohammadian, Elham Aznab

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Health service design will need to change due to bringing in new digital health tools. This highlights the importance of innovation in adopting Health Information Technology (HIT). It can be argued that innovation in the health sector correlates with entrepreneurship. Various reasons exist for health entrepreneurs to advocate increased investment in HIT to compensate for shortcomings in the health sector and improve the quality of healthcare. Furthermore, every innovative program presents challenges and motivations for entrepreneurs that may distract or encourage the adoption of technology. Our study used a systematic literature review to identify relevant articles that defined the frustrations and promotions of using health information technology in organizations or enterprises. A meta-analysis of the articles was conducted to identify the factors driving or pulling entrepreneurs to use HIT.

Keywords: health information technology, health entrepreneurship, health enterprise, health entrepreneurs' innovation

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Authors: Mary Fabiola

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Vermicompost is the product or process of composting using various worms. Large-scale vermicomposting is practiced in Canada, Italy, Japan, Malaysia, the Philippines, and the United States. The vermicompost may be used for farming, landscaping, and creating compost tea or for sale. Some of these operations produce worms for bait and/or home vermicomposting. As a processing system, The vermicomposting of organic waste is very simple. Worms ingest the waste material-break it up in their rudimentary. Gizzards, consume the digestible/putrefiable portion and then excrete a stable, Humus-like material that can be immediately marketed. Vermitechnology can be a promising technique that has shown its potential in certain challenging areas like augmentation of food production, waste recycling, management of solid wastes etc. There is no doubt that in India, where on side pollution is increasing due to accumulation of organic wastes and on the other side there is shortage of organic manure, which could increase the fertility and productivity of the land and produce nutritive and safe food. So, the scope for vermicomposting is enormous.

Keywords: pollution, solid wastes, vermicompost, waste recycling

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Authors: Hyunjoo Park, Taehyun Kim, Taehyun Kim

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Human life, activity, and culture depend on the wider environment. Cities offer economic opportunities for goods and services, but cannot exist in environments without food, energy, and water supply. Technological innovation in energy supply and transport speeds up the expansion of urban areas and the physical separation from agricultural land. As a result, division of urban agricultural areas causes more energy demand for food and goods transport between the regions. As the energy resources are leaking all over the world, the impact on the environment crossing the boundaries of cities is also growing. While advances in energy and other technologies can reduce the environmental impact of consumption, there is still a gap between energy supply and demand by current technology, even in technically advanced countries. Therefore, reducing energy demand is more realistic than relying solely on the development of technology for sustainable development. The purpose of this study is to introduce the application of carbon footprint assessment in fields of urban planning and geography. In urban studies, carbon footprint has been assessed at different geographical scales, such as nation, city, region, household, and individual. Carbon footprint assessment for a nation and a city is available by using national or city level statistics of energy consumption categories. By means of carbon footprint calculation, it is possible to compare the ecological capacity and deficit among nations and cities. Carbon footprint also offers great insight on the geographical distribution of carbon intensity at a regional level in the agricultural field. The study shows the background of carbon footprint applications in urban planning and geography by case studies such as figuring out sustainable land-use measures in urban planning and geography. For micro level, footprint quiz or survey can be adapted to measure household and individual carbon footprint. For example, first case study collected carbon footprint data from the survey measuring home energy use and travel behavior of 2,064 households in eight cities in Gyeonggi-do, Korea. Second case study analyzed the effects of the net and gross population densities on carbon footprint of residents at an intra-urban scale in the capital city of Seoul, Korea. In this study, the individual carbon footprint of residents was calculated by converting the carbon intensities of home and travel fossil fuel use of respondents to the unit of metric ton of carbon dioxide (tCO₂) by multiplying the conversion factors equivalent to the carbon intensities of each energy source, such as electricity, natural gas, and gasoline. Carbon footprint is an important concept not only for reducing climate change but also for sustainable development. As seen in case studies carbon footprint may be measured and applied in various spatial units, including but not limited to countries and regions. These examples may provide new perspectives on carbon footprint application in planning and geography. In addition, additional concerns for consumption of food, goods, and services can be included in carbon footprint calculation in the area of urban planning and geography.

Keywords: carbon footprint, case study, geography, urban planning

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Authors: Mihika Shivkumar, Krishna Kumar, C. Perisamy

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3D printing is a method of manufacturing wherein materials, such as plastic or metal, are deposited in layers one on top of the other to produce a three dimensional object. 3D printing is most commonly associated with creating engineering prototypes. However, its applications in the field of human health care have been frequently disregarded. Medical applications for 3D printing are expanding rapidly and are envisaged to revolutionize health care. Medical applications for 3D printing, both present and its potential, can be categorized broadly, including: creation of customized prosthetics tissue and organ fabrication; creation of implants, and anatomical models and pharmaceutical research regarding drug dosage forms. This piece breaks down bioprinting in the healthcare sector. It focuses on the better subtle elements of every particular point, including how 3D printing functions in the present, its impediments, and future applications in the health care sector.

Keywords: bio-printing, prototype, drug delivery, organ regeneration

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Authors: Robert E. Kenney, Efrain Antunez, Samuel Nodal, Ameer Malik, Richard B. Aguilar

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Physician burnout has gained much attention during the COVID pandemic. After-hours workload, HCC coding, HEDIS metrics, and clinical documentation negatively impact career satisfaction. These and other influences have increased the rate of physicians leaving the workforce. In addition, roughly 1% of the entire physician workforce will be retiring earlier than expected based on pre-pandemic trends. The two Medical Specialties with the highest rates of burnout are Family Medicine and Primary Care. With a predicted shortage of primary care physicians looming, the need to address physician burnout is crucial. Commonly reported issues leading to clinician burnout are clerical documentation requirements, increased time working on Electronic Health Records (EHR) after hours, and a decrease in work-life balance. Clinicians experiencing burnout with physical and emotional exhaustion are at an increased likelihood of providing lower quality and less efficient patient care. This may include a lack of suitable clinical documentation, medication reconciliation, clinical assessment, and treatment plans. While the annual baseline turnover rates of physicians hover around 6-7%, the COVID pandemic profoundly disrupted the delivery of healthcare. A report found that 43% of physicians switched jobs during the initial two years of the COVID pandemic (2020 and 2021), tripling the expected average annual rate to 21.5 %/yr. During this same time, an average of 4% and 1.5% of physicians retired or left the workforce for a non-clinical career, respectively. The report notes that 35.2% made career changes for a better work-life balance and another 35% reported the reason as being unhappy with their administration’s response to the pandemic. A physician-led primary care-focused health organization, Cano Health (CH), based out of Florida, sought to preemptively address this problem by implementing several supportive measures. Working with >120 clinics and >280 PCPs from Miami to Tampa and Orlando, managing nearly 120,000 Medicare Advantage lives, CH implemented a number of changes to assist with the clinician’s workload. Supportive services such as after hour and home visits by APRNs, in-clinic care managers, and patient educators were implemented. In 2021, assistive Artificial Intelligence Software (AIS) was integrated into the EHR platform. This AIS converts free text within PDF files into a usable (copy-paste) format facilitating documentation. The software also systematically and chronologically organizes clinical data, including labs, medical records, consultations, diagnostic images, medications, etc., into an easy-to-use organ system or chronic disease state format. This reduced the excess time and documentation burden required to meet payor and CMS guidelines. A clinician Documentation Support team was employed to improve the billing/coding performance. The effects of these newly designed workflow interventions were measured via analysis of clinician turnover from CH’s hiring and termination reporting software. CH’s annualized average clinician turnover rate in 2020 and 2021 were 17.7% and 12.6%, respectively. This represents a 30% relative reduction in turnover rate compared to the reported national average of 21.5%. Retirement rates during both years were 0.1%, demonstrating a relative reduction of >95% compared to the national average (4%). This model successfully promoted the retention of clinicians in a Value-Based Care setting.

Keywords: clinician burnout, COVID-19, value-based care, burnout, clinician retirement

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Authors: Min Kyu Kim, Eun Young Lee, Dong Woo Son, Yoon Seok Chang

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In this paper, we introduce a flexible box erecting machine (BEM) that swiftly and automatically transforms cardboard into a three dimensional box. Recently, the parcel service and home-shopping industries have grown rapidly, and there is an increasing need for various box types to ship various products. However, workers cannot fold thousands of boxes manually in a day. As such, automatic BEMs are garnering greater attention. This study takes equipment operation into consideration as well as mechanical improvements in order to design a BEM that is able to outperform its conventional counterparts. We analyzed six dispatching rules – First In First Out (FIFO), Shortest Processing Time (SPT), Earliest Due Date (EDD), Setup Avoidance, EDD + SPT, and EDD + Setup Avoidance – to determine which one was most suitable for BEM operation. Consequently, SPT and Setup Avoidance were found to be the most critical rules, followed by EDD + Setup Avoidance, EDD + SPT, EDD, and FIFO. This hierarchy was valid for both our conventional BEM and our new flexible BEM from the viewpoint of processing time. We believe that this research can contribute to flexible BEM management, which has the potential to increase productivity and convenience.

Keywords: automation, box erecting machine, dispatching rule, setup time

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Authors: Douglas N. Simões, Michele Pittol, Vanda F. Ribeiro, Daiane Tomacheski, Ruth M. C. Santana

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The increasing demand of thermoplastic elastomers is related to the wide range of applications, such as automotive, footwear, wire and cable industries, adhesives and medical devices, cell phones, sporting goods, toys and others. These materials are susceptible to microbial attack. Moisture and organic matter present in some areas (such as shower area and sink), provide favorable conditions for microbial proliferation, which contributes to the spread of diseases and reduces the product life cycle. Compounds based on SEBS copolymers, poly(styrene-b-(ethylene-co-butylene)-b-styrene, are a class of thermoplastic elastomers (TPE), fully recyclable and largely used in domestic appliances like bath mats and tooth brushes (soft touch). Zinc oxide and zinc ions loaded in personal and home care products have become common in the last years due to its biocidal effect. In that sense, the aim of this study was to evaluate the effect of zinc as antimicrobial agent in compounds based on SEBS/polypropylene/oil/ calcite for use as refrigerator seals (gaskets), bath mats and sink squeegee. Two zinc oxides from different suppliers (ZnO-Pe and ZnO-WR) and one masterbatch of zinc ions (M-Zn-ion) were used in proportions of 0%, 1%, 3% and 5%. The compounds were prepared using a co-rotating double screw extruder (L/D ratio of 40/1 and 16 mm screw diameter). The extrusion parameters were kept constant for all materials. Tests specimens were prepared using the injection molding machine. A compound with no antimicrobial additive (standard) was also tested. Compounds were characterized by physical (density), mechanical (hardness and tensile properties) and rheological properties (melt flow rate - MFR). The Japan Industrial Standard (JIS) Z 2801:2010 was applied to evaluate antibacterial properties against Staphylococcus aureus (S. aureus) and Escherichia coli (E. coli). The Brazilian Association of Technical Standards (ABNT) NBR 15275:2014 were used to evaluate antifungal properties against Aspergillus niger (A. niger), Aureobasidium pullulans (A. pullulans), Candida albicans (C. albicans), and Penicillium chrysogenum (P. chrysogenum). The microbiological assay showed a reduction over 42% in E. coli and over 49% in S. aureus population. The tests with fungi showed inconclusive results because the sample without zinc also demonstrated an inhibition of fungal development when tested against A. pullulans, C. albicans and P. chrysogenum. In addition, the zinc loaded samples showed worse results than the standard sample when tested against A. niger. The zinc addition did not show significant variation in mechanical properties. However, the density values increased with the rise in ZnO additives concentration, and had a little decrease in M-Zn-ion samples. Also, there were differences in the MFR results in all compounds compared to the standard.

Keywords: antimicrobial, home device, SEBS, zinc

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Authors: Sol Girouard, Zona Kostic

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A home is often the largest and most expensive purchase a person makes. Whether the decision leads to a successful outcome will be determined by a combination of critical factors. In this paper, we propose a method that efficiently handles all the factors in residential real estate and performs predictions given a feature space with high dimensionality while controlling for overfitting. The proposed method was built on gradient descent and boosting algorithms and uses a mixed optimizing technique to improve the prediction power. Usually, a single model cannot handle all the cases thus our approach builds multiple models based on different subsets of the predictors. The algorithm was tested on 3 million homes across the U.S., and the experimental results demonstrate the efficiency of this approach by outperforming techniques currently used in forecasting prices. With everyday changes on the real estate market, our proposed algorithm capitalizes from new events allowing more efficient predictions.

Keywords: real estate prediction, gradient descent, boosting, ensemble methods, active learning, training

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Authors: Ruth Green, Samantha Milton, Rinal Desai

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Background/Aims: Eye pain/swelling/redness is a common presentation to Barnet General Hospital (a district general hospital), pediatric emergency department, and is managed by both the pediatric and emergency teams. The management of each child differs dramatically depending on the healthcare professional who reviews them. There also appears to be confusion in diagnosis between periorbital cellulitis, pre-septal cellulitis, and orbital cellulitis. Pre septal cellulitis refers to an inflammation of the eyelids and soft tissue anterior to the orbital septum. In contrast, orbital cellulitis is a serious, rapidly progressive infection of soft tissues located posterior to the orbital septum. Pre-septal cellulitis is more prevalent and less serious than orbital cellulitis, although it may be part of a continuous spectrum if untreated. Pre-septal cellulitis should there be diagnosed and treated urgently to prevent spread to the septum. For the purpose of the audit, the term periorbital cellulitis has been used as an umbrella term for all spectrums of this infection. The audit aimed to look at, how as a whole, the department is diagnosing and managing orbital and pre-septal cellulitis. Gold Standard: Patients of the same age and diagnosis should be treated with the same medication, advice, and follow-up. Method: Data was collected retrospectively from pediatric patients ( < 18years) who attended the emergency department from June 2019 to February 2020 who had been coded as pre-septal cellulitis, periorbital cellulitis, orbital cellulitis, or eye pain/swelling/redness. Demographics, signs and symptoms, management, and follow-up were recorded for all patients with any of the diagnoses of pre-septal, periorbital, or orbital cellulitis. A Microsoft Excel spreadsheet was used to record the anonymised data. Results: There were vast discrepancies in the diagnosis, management, and follow-up of patients with periorbital cellulitis. Conclusion/Discussion: The audit concluded there is no uniform approach to managing periorbital cellulitis in Barnet General Hospital Paediatric Emergency Department. Healthcare professionals misdiagnosed conjunctivitis as periorbital cellulitis, and adequate steps did not appear to be documented on excluding red flag signs and symptoms of patients presenting. There was no consistency in follow-up, with some patients having timely phone reviews or clinical reviews for mild symptoms. Advice given by the staff was appropriate, and patients did return when symptoms got worse and were treated accordingly. Plan: Given the inconsistency, a gold standard care pathway or local easily accessible clinical guideline can be developed to help with the diagnosis and management of periorbital cellulitis. Along with this, a teaching session can be carried out for the staff of the pediatric team and emergency department to disseminate the teaching. Following the introduction of a guideline and teaching sessions, patients notes can be re-reviewed to check improvement in patient care.

Keywords: periorbital cellulitis, preseptal cellulitis, orbital cellulitis, erythematous eyelid

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Authors: Wilaiwan Jongwilaikasaem, Phatteera Sarakornborrirak

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While Thai television producers feel anxious about digital disruption, Love Destiny, Thai television period drama became smash hit in Thailand in 2018. Audience throughout the country not only watched the drama both offline and online but also spread the content of the drama on social media and followed cultural trends from the protagonist. Thus, the main purpose of this article is to examine the secret behind the success of Love Destiny. Data were collected from content analysis and in-depth interview. The result shows that the key success of the drama is from earned media phenomenon from the audience and marketers’ engagement. As Love Destiny has full-flavored content with traditional challenged plot, delicate production, and presentation of Thainess in a positive and tangible way; audience and marketers are enthusiastic about building up the popular trend of Love Destiny on social media and also coming back home to watch televisions when the drama was on the air.

Keywords: Thai drama, earned media, Love Destiny, television

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Authors: Ilham Zaidi, P. Sankara Sarma, Quazi Taufique Ahmed, V. Raman Kutty, Khalid Umer Khayyam, Gurpreet Singh, Abhishek Royal

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Introduction: Tuberculosis is a global public health emergency, but it is particularly acute in India, which has the world's highest tuberculosis burden. Due to overpopulation, lack of sanitation, malnutrition, low living standards, and poor socioeconomic status, among other factors, it is India's most common infectious disease. The long period of treatment is one of the main reasons for considering it as a public health emergency. Consequently, there is an increase in patient noncompliance, which leads to treatment failure, adverse treatment outcomes, and deaths. This could lead to the growth of anti-TB drug resistance. According to the WHO, approximately 558 thousand new cases of Multi-Drug Resistance Tuberculosis were diagnosed worldwide, with 8.5 percent developed Extensively Drug Resistance Tuberculosis. Methodology: This study is a program-based cross-sectional descriptive survey of adult tuberculosis patients enrolled in the Delhi-based Revised National Tuberculosis Program. The study setting was 27 NTEP districts of Delhi. (N=65,893) and Sample size- was 200; the sampling method which is used in the study was the systemic random sampling method. Results: Most of the demographic factors (age, gender, residence, and family type) were not significantly associated with adherence; marital status was found statistically significant with the treatment compliance. Hesitation while telling people about the disease and motivation to strictly follow drug schedule by healthcare workers were other factors where a significant association with drug adherence was observed. The study findings also suggest that provision of food, minimal financial and other moral support from family, counseling, discussion and politeness by healthcare providers might also facilitate adherence. Discussion and Conclusions: For TB treatment, adherence, age, sex, socioeconomic status, types of accommodations, malnutrition, and personal hygiene should all be considered; similar results were observed in previous studies. In the care of TB patients, DOTS services, health workers, and family support play a significant role. According to the country's National Strategic Plan, the Indian government has set a goal of eliminating tuberculosis by 2025 and patients' compliance with TB care and treatment adherence is very crucial to achieve this aim. A cohort study will be able to give a better understanding of factors associated with adherence since this study may have missed some defaulters who were absconding and could not be reached. Important Terms: RNTCP, NTEP, DOTS, DS-TB, DR-TB, RR-TB, MDR-TB, XDR-TB, Treatment failure, Treatment relapse, Treatment adherence.

Keywords: treatment adherence, treatment relapse, treatment failure, drug resistance tuberculosis

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Authors: Kavitha Puthanveedu, Kasi Sekar, Preeti Jacob, Kavita Jangam

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In India, The Juvenile Justice (Care and Protection of Children) Act, 2015, the law related to children alleged and found to be in conflict with law, proposes to address to the rehabilitation of children in conflict with law by catering to the basic rights by providing care and protection, development, treatment, and social re-integration. A major concern in addressing the issues of children in conflict with law in Kerala the southernmost state in India identified were: 1. Lack of psychological assessment for children in conflict with law, 2. Poor psychosocial intervention for children in conflict with law on bail, 3. Lack of psychosocial intervention or proper care and protection of CCL residing at observation and special home, 4. Lack convergence with systems related with mental health care. Aim: To develop individual care plan for children in conflict with law. Methodology: NIMHANS a premier Institute of Mental Health and Neurosciences, collaborated with Social Justice Department, Govt. of Kerala to address this issue by developing a participatory methodology to implement psychosocial care in the existing services by integrating the activities through multidisciplinary and multisectoral approach as per the Sec. 18 of JJAct 2015. Developing individual care plan: Key informant interviews, focus group discussion with multiple stakeholders consisting of legal officers, police, child protection officials, counselors, and home staff were conducted. Case studies were conducted among children in conflict with law. A checklist on 80 psychosocial problems among children in conflict with law was prepared with eight major issues identified through the quantitative process such as family and parental characteristic, family interactions and relationships, stressful life event, social and environmental factors, child’s individual characteristics, education, child labour and high-risk behavior. Standardised scales were used to identify the anxiety, caseness, suicidality and substance use among the children. This provided a background data understand the psychosocial problems experienced by children in conflict with law. In the second stage, a detailed plan of action was developed involving multiple stakeholders that include Special juvenile police unit, DCPO, JJB, and NGOs. The individual care plan was reviewed by a panel of 4 experts working in the area of children, followed by the review by multiple stakeholders in juvenile justice system such as Magistrates, JJB members, legal cum probation officers, district child protection officers, social workers and counselors. Necessary changes were made in the individual care plan in each stage which was pilot tested with 45 children for a period of one month and standardized for administering among children in conflict with law. Result: The individual care plan developed through scientific process was standardized and currently administered among children in conflict with law in the state of Kerala in the 3 districts that will be further implemented in other 14 districts. The program was successful in developing a systematic approach for the psychosocial intervention of children in conflict with law that can be a forerunner for other states in India.

Keywords: psychosocial care, individual care plan, multidisciplinary, multisectoral

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Authors: Sandra Costa-Santos, Nadia Bertolino, Stephen Hicks, Vanessa May, Camilla Lewis

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This paper aims to elaborate the architectural theory on place-making that supported Claremont Court housing scheme (Edinburgh, United Kingdom). Claremont Court (1959-62) is a large post-war mixed development housing scheme designed by Basil Spence, which included ‘place-making’ as one of its founding principles. Although some stylistic readings of the housing scheme have been published, the theory on place-making that allegedly ruled the design has yet to be clarified. The architecture allows us to mark or make a place within space in order to dwell. Under the framework of contemporary philosophical theories of place, this paper aims to explore the relationship between place and dwelling through a cross-disciplinary reading of Claremont Court, with a view to develop an architectural theory on place-making. Since dwelling represents the way we are immersed in our world in an existential manner, this theme is not just relevant for architecture but also for philosophy and sociology. The research in this work is interpretive-historic in nature. It examines documentary evidence of the original architectural design, together with relevant literature in sociology, history, and architecture, through the lens of theories of place. First, the paper explores how the dwelling types originally included in Claremont Court supported ideas of dwelling or meanings of home. Then, it traces shared space and social ties in order to study the symbolic boundaries that allow the creation of a collective identity or sense of belonging. Finally, the relation between the housing scheme and the supporting theory is identified. The findings of this research reveal Scottish architect Basil Spence’s exploration of the meaning of home, as he changed his approach to the mass housing while acting as President of the Royal Incorporation of British Architects (1958-60). When the British Government was engaged in various ambitious building programmes, he sought to drive architecture to a wider socio-political debate as president of the RIBA, hence moving towards a more ambitious and innovative socio-architectural approach. Rather than trying to address the ‘genius loci’ with an architectural proposition, as has been stated, the research shows that the place-making theory behind the housing scheme was supported by notions of community-based on shared space and dispositions. The design of the housing scheme was steered by a desire to foster social relations and collective identities, rather than by the idea of keeping the spirit of the place. This research is part of a cross-disciplinary project funded by the Arts and Humanities Research Council. The findings present Claremont Court as a signifier of Basil Spence’s attempt to address the post-war political debate on housing in United Kingdom. They highlight the architect’s theoretical agenda and challenge current purely stylistic readings of Claremont Court as they fail to acknowledge its social relevance.

Keywords: architectural theory, dwelling, place-making, post-war housing

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Authors: H. van Rensburg, B. Adcock, B. Al Mansouri

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This paper discusses the impact of pedagogical and learning differences on Arabic international students’ (AIS) learning when they come to study in Australia. It describes the difference in teaching and learning methods between the students’ home countries in the Arabic world and Australia. There are many research papers that discuss the general experiences of international students in the western learning systems, including Australia. However, there is little research conducted specifically about AIS learning in Australia. Therefore, the data was collected through in-depth, semi-structured interviews with AIS who are learning at an Australian regional university in Queensland. For that reason, this paper contributes to fill a gap by reporting on the learning experiences of AIS in Australia and, more specifically, on the AIS’ pedagogical experiences. Not only discussing the learning experiences of AIS, but also discussing the cultural adaptation using the Oberg’s cultural adaptation model. This paper suggests some learning strategies that may benefit AIS and academic lecturers when teaching students from a completely different culture and language.

Keywords: arabic international students, cultural adaption, learning differences, learning systems

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Authors: Ju-Chun Chien

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Rapid aging and depopulation could lead to serious problems, including workforce shortages and health expenditure costs. The current and predicted future LTC workforce shortages could be a real threat to Taiwan’s society. By means of comparison of data from 144 nursing aide trainees and 727 general public, the main purpose of the present study was to determine whether there were any notable differences between the two groups toward engaging in LTC services. Moreover, this study focused on recognizing the attributes of the general public who had the willingness to take LTC jobs but continue to ride the fence. A self-developed questionnaire was designed based on Ajzen’s Theory of Planned Behavior model. After conducting exploratory factor analysis (EFA) and reliability analysis, the questionnaire was a reliable and valid instrument for both nursing aide trainees and the general public. The main results were as follows: Firstly, nearly 70% of nursing aide trainees showed interest in LTC jobs. Most of them were middle-aged female (M = 46.85, SD = 9.31), had a high school diploma or lower, had unrelated work experience in healthcare, and were mostly unemployed. The most common reason for attending the LTC training program was to gain skills in a particular field. The second most common reason was to obtain the license. The third and fourth reasons were to be interested in caring for people and to increase income. The three major reasons that might push them to leave LTC jobs were physical exhaustion, payment is bad, and being looked down on. Secondly, the variables that best-predicted nursing aide trainees’ intention to engage in LTC services were having personal willingness, perceived behavior control, with high school diploma or lower, and supported from family and friends. Finally, only 11.80% of the general public reported having interest in LTC jobs (the disapproval rating was 50% for the general public). In comparison to nursing aide trainees who showed interest in LTC settings, 64.8% of the new workforce for LTC among the general public was male and had an associate degree, 54.8% had relevant healthcare experience, 67.1% was currently employed, and they were younger (M = 32.19, SD = 13.19) and unmarried (66.3%). Furthermore, the most commonly reason for the new workforce to engage in LTC jobs were to gain skills in a particular field. The second priority was to be interested in caring for people. The third and fourth most reasons were to give back to society and to increase income, respectively. The top five most commonly reasons for the new workforce to quitting LTC jobs were listed as follows: physical exhaustion, being looked down on, excessive working hours, payment is bad, and excessive job stress.

Keywords: long-term care services, nursing aide trainees, Taiwanese people, theory of planned behavior

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Authors: Yi Jen Wang, Yu Ju Chen

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Background: Heart rate variability (HRV) biofeedback can promote autonomic nervous function, sleep quality and reduce psychological stress. In HRV biofeedback training, it is hoped that through the guidance of machine video or audio, the patient can breathe slowly according to his own heart rate changes so that the heart and lungs can achieve resonance, thereby promoting the related effects of autonomic nerve function; while, it is also pointed out that if slow breathing of 6 times per minute can also guide the case to achieve the effect of cardiopulmonary resonance. However, there is no relevant research to explore the comparison of the effectiveness of cardiopulmonary resonance by using video or audio HRV biofeedback training and metronome-guided slow breathing. Purpose: To compare the promotion of autonomic nervous function performance between using HRV biofeedback and slow breathing guided by a metronome. Method: This research is a kind of experimental design with convenient sampling; the cases are randomly divided into the heart rate variability biofeedback training group and the slow breathing training group. The HRV biofeedback training group will conduct HRV biofeedback training in a four-week laboratory and use the home training device for autonomous training; while the slow breathing training group will conduct slow breathing training in the four-week laboratory using the mobile phone APP breathing metronome to guide the slow breathing training, and use the mobile phone APP for autonomous training at home. After two groups were enrolled and four weeks after the intervention, the autonomic nervous function-related performance was repeatedly measured. Using the chi-square test, student’s t-test and other statistical methods to analyze the results, and use p <0.05 as the basis for statistical significance. Results: A total of 27 subjects were included in the analysis. After four weeks of training, the HRV biofeedback training group showed significant improvement in the HRV indexes (SDNN, RMSSD, HF, TP) and sleep quality. Although the stress index also decreased, it did not reach statistical significance; the slow breathing training group was not statistically significant after four weeks of training, only sleep quality improved significantly, while the HRV indexes (SDNN, RMSSD, TP) all increased. Although HF and stress indexes decreased, they were not statistically significant. Comparing the difference between the two groups after training, it was found that the HF index improved significantly and reached statistical significance in the HRV biofeedback training group. Although the sleep quality of the two groups improved, it did not reach that level in a statistically significant difference. Conclusion: HRV biofeedback training is more effective in promoting autonomic nervous function than slow breathing training, but the effects of reducing stress and promoting sleep quality need to be explored after increasing the number of samples. The results of this study can provide a reference for clinical or community health promotion. In the future, it can also be further designed to integrate heart rate variability biological feedback training into the development of AI artificial intelligence wearable devices, which can make it more convenient for people to train independently and get effective feedback in time.

Keywords: autonomic nervous function, HRV biofeedback, heart rate variability, slow breathing

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Authors: Ramazan Bakir, Gizem Kayar

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It is known that Alzheimer and Dementia are the two most common types of Neurodegenerative diseases and their visibility is getting accelerated for the last couple of years. As the population sees older ages all over the world, researchers expect to see the rate of this acceleration much higher. However, unfortunately, there is no known pharmacological cure for both, although some help to reduce the rate of cognitive decline speed. This is why we encounter with non-pharmacological treatment and tracking methods more for the last five years. Many researchers, including well-known associations and hospitals, lean towards using non-pharmacological methods to support cognitive function and improve the patient’s life quality. As the dementia symptoms related to mind, learning, memory, speaking, problem-solving, social abilities and daily activities gradually worsen over the years, many researchers know that cognitive support should start from the very beginning of the symptoms in order to slow down the decline. At this point, life of a patient and caregiver can be improved with some daily activities and applications. These activities include but not limited to basic word puzzles, daily cleaning activities, taking notes. Later, these activities and their results should be observed carefully and it is only possible during patient/caregiver and M.D. in-person meetings in hospitals. These meetings can be quite time-consuming, exhausting and financially ineffective for hospitals, medical doctors, caregivers and especially for patients. On the other hand, digital support systems are showing positive results for all stakeholders of healthcare systems. This can be observed in countries that started Telemedicine systems. The biggest potential of our system is setting the inter-user communication up in the best possible way. In our project, we propose Machine Learning based digitalization of validated traditional cognitive tests (e.g. MOCA, Afazi, left-right hemisphere), their analyses for high-quality follow-up and communication systems for all stakeholders. R. Bakir and G. Kayar are with Gefeasoft, Inc, R&D – Software Development and Health Technologies company. Emails: ramazan, gizem @ gefeasoft.com This platform has a high potential not only for patient tracking but also for making all stakeholders feel safe through all stages. As the registered hospitals assign corresponding medical doctors to the system, these MDs are able to register their own patients and assign special tasks for each patient. With our integrated machine learning support, MDs are able to track the failure and success rates of each patient and also see general averages among similarly progressed patients. In addition, our platform also supports multi-player technology which helps patients play with their caregivers so that they feel much safer at any point they are uncomfortable. By also gamifying the daily household activities, the patients will be able to repeat their social tasks and we will provide non-pharmacological reminiscence therapy (RT – life review therapy). All collected data will be mined by our data scientists and analyzed meaningfully. In addition, we will also add gamification modules for caregivers based on Naomi Feil’s Validation Therapy. Both are behaving positively to the patient and keeping yourself mentally healthy is important for caregivers. We aim to provide a therapy system based on gamification for them, too. When this project accomplishes all the above-written tasks, patients will have the chance to do many tasks at home remotely and MDs will be able to follow them up very effectively. We propose a complete platform and the whole project is both time and cost-effective for supporting all stakeholders.

Keywords: alzheimer’s, dementia, cognitive functionality, cognitive tests, serious games, machine learning, artificial intelligence, digitalization, non-pharmacological, data analysis, telemedicine, e-health, health-tech, gamification

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Authors: Miroslav Popelka, Jakub Nožička

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In this paper we deal with using Lego Mindstorms in simulation of robotic systems with respect to cost reduction. Lego Mindstorms kit contains broad variety of hardware components which are required to simulate, program and test the robotics systems in practice. Algorithm programming went in development environment supplied together with Lego kit as in programming language C# as well. Algorithm following the line, which we dealt with in this paper, uses theoretical findings from area of controlling circuits. PID controller has been chosen as controlling circuit whose individual components were experimentally adjusted for optimal motion of robot tracking the line. Data which are determined to process by algorithm are collected by sensors which scan the interface between black and white surfaces followed by robot. Based on discovered facts Lego Mindstorms can be considered for low-cost and capable kit to simulate real robotics systems.

Keywords: LEGO Mindstorms, PID controller, low-cost robotics systems, line follower, sensors, programming language C#, EV3 Home Edition Software

Procedia PDF Downloads 375

Authors: Temesgen Geremew Tefery

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Nanomaterials, due to their unique properties, have revolutionized the field of biosensing. Their functionalization, or modification with specific molecules, is crucial for enhancing their biocompatibility, selectivity, and sensitivity. This review explores recent advancements in nanomaterial functionalization for biosensing applications. We discuss various strategies, including covalent and non-covalent modifications, and their impact on biosensor performance. The use of biomolecules like antibodies, enzymes, and nucleic acids for targeted detection is highlighted. Furthermore, the integration of nanomaterials with different sensing modalities, such as electrochemical, optical, and mechanical, is examined. The future outlook for nanomaterial-based biosensing is promising, with potential applications in healthcare, environmental monitoring, and food safety. However, challenges related to biocompatibility, scalability, and cost-effectiveness need to be addressed. Continued research and development in this area will likely lead to even more sophisticated and versatile biosensing technologies.

Keywords: biosensing, nanomaterials, biotechnology, nanotechnology

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Authors: Arnab Banerjee, Deep Sagar Verma

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Tier 3 cities of India is home to one of the fastest growing socio-economic powers in the world and hence is the focus of a lot of business activity as it is almost a blue ocean giving the first mover a huge strategic advantage. Among the various sectors, the retailing is perhaps one of the most promising sectors. The study caries out 129 successfully structured mall-intercept interviews in the town of Shillong, Meghalaya in an attempt to understand the SBO and MBO shoppers. Demographic variables itself does not show any store format preference although discounts do attract the lower income group more while clear difference is observed among genders when it comes to importance of ambience, and it is more pronounced for SBO patrons. SBO patrons are more focused while MBO patrons are more into leisure shopping. Price is the most important predictor of satisfaction especially for MBO shoppers. The market shows three basic segments i.e experiential, relationship and value shoppers.

Keywords: demographic variables, degree of importance, degree of satisfaction, SBO and MBO

Procedia PDF Downloads 290

Authors: Degale Desta, Cheng Jian

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The most important factor in identifying a person is their face. Even identical twins have their own distinct faces. As a result, identification and face recognition are needed to tell one person from another. A face recognition system is a verification tool used to establish a person's identity using biometrics. Nowadays, face recognition is a common technique used in a variety of applications, including home security systems, criminal identification, and phone unlock systems. This system is more secure because it only requires a facial image instead of other dependencies like a key or card. Face detection and face identification are the two phases that typically make up a human recognition system.The idea behind designing and creating a face recognition system using deep learning with Azure ML Python's OpenCV is explained in this paper. Face recognition is a task that can be accomplished using deep learning, and given the accuracy of this method, it appears to be a suitable approach. To show how accurate the suggested face recognition system is, experimental results are given in 98.46% accuracy using Fast-RCNN Performance of algorithms under different training conditions.

Keywords: deep learning, face recognition, identification, fast-RCNN

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Authors: Arpit Patil, Atharav Bhagwat, Rajas Bhope, Pramod Bide

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This research integrates IoT and ML to predict heart failure risks, utilizing the Framingham dataset. IoT devices gather real-time physiological data, focusing on heart rate dynamics, while ML, specifically Random Forest, predicts heart failure. Rigorous feature selection enhances accuracy, achieving over 90% prediction rate. This amalgamation marks a transformative step in proactive healthcare, highlighting early detection's critical role in cardiovascular risk mitigation. Challenges persist, necessitating continual refinement for improved predictive capabilities.

Keywords: cardiovascular diseases, internet of things, machine learning, cardiac risk assessment, heart failure prediction, early detection, cardio data analysis

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Authors: F. Kovács, K. Kádár, G. Hosszú, Á. T. Balogh, T. Zsedrovits, N. Kersner, A. Nagy, Gy. Jeney

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The paper presents a novel screening method to indicate congenital heart diseases (CHD), which otherwise could remain undetected because of their low level. Therefore, not belonging to the high-risk population, the pregnancies are not subject to the regular fetal monitoring with ultrasound echocardiography. Based on the fact that CHD is a morphological defect of the heart causing turbulent blood flow, the turbulence appears as a murmur, which can be detected by fetal phonocardiography (fPCG). The proposed method applies measurements on the maternal abdomen and from the recorded sound signal a sophisticated processing determines the fetal heart murmur. The paper describes the problems and the additional advantages of the fPCG method including the possibility of measurements at home and its combination with the prescribed regular cardiotocographic (CTG) monitoring. The proposed screening process implemented on a telemedicine system provides an enhanced safety against hidden cardiac diseases.

Keywords: cardiac murmurs, fetal phonocardiography, screening of CHDs, telemedicine system

Procedia PDF Downloads 332

Authors: A. A. AlRasheed, A. Atkins, R. Campion

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This paper focuses on using knowledge management and visualisation concepts to improve the patients and hospitals employee’s workflow. Hospitals workflow is a complex and complicated process and poor patient flow can put both patients and a hospital’s reputation at risk, and can threaten the facility’s financial sustainability. Healthcare leaders are under increased pressure to reduce costs while maintaining or increasing patient care standards. In this paper, a framework is proposed to help improving patient experience, staff satisfaction, and operational efficiency across hospitals by using knowledge management based visualisation concepts. This framework is using real-time visibility to track and monitor location and status of patients, staff, rooms, and medical equipment.

Keywords: knowledge management, improvements, visualisation, workflow

Procedia PDF Downloads 268

Authors: Jo Parsons, Cath Grimley, Debra Bick, Sarah Hillman, Louise Clarke, Helen Atherton

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The problem: Vaccinations are routinely offered to pregnant women in the UK for influenza (flu), pertussis (whooping cough), and COVID-19, yet the uptake of these vaccinations in pregnancy remains low. Pregnant women are at increased risk of hospitalisation, morbidity, and mortality from these preventable illnesses, which can also expose their unborn babies to an increased risk of serious complications, including in utero death. This research aims to explore how pregnant women feel about vaccinations offered during pregnancy (flu, whooping cough, and COVID-19), particularly following the COVID-19 pandemic. It also aims to examine factors influencing women’s decisions about vaccinations during pregnancy and how they feel about their health and vulnerabilities to illness arising from the COVID-19 pandemic. The approach: This is a qualitative study involving semi-structured interviews with pregnant women and midwives in the UK. Interviews with pregnant women explored their views since the COVID-19 pandemic about vaccinations offered during pregnancy and whether the pandemic has influenced perceptions of vulnerability to illness in pregnant women. Interviews with midwives explored vaccination discussions they routinely have with pregnant women and identified some of the barriers to vaccination that pregnant women discuss with them. Pregnant women were recruited via participating hospitals and community groups. Midwives were recruited via participating hospitals and midwife-specific social media groups. All interviews were conducted remotely (using telephone or Microsoft Teams) and analysed using thematic analysis. Findings: 43 pregnant women and 16 midwives were recruited and interviewed. The findings presented will focus on data from pregnant women. Pregnant women reported a wide range of views and vaccination behaviour, and identified several factors influencing their decision whether to accept vaccinations or not. These included internal factors (comprised of beliefs about susceptibility to illness, perceptions of immunity, fear, and feelings of responsibility), other influences (including visibility of illness and external influences such as healthcare professional recommendations), vaccination-related factors (comprised of beliefs about effectiveness and safety of vaccinations, availability and accessibility of vaccinations and preferences for alternative forms of protection to vaccination) and COVID-19 specific factors (including COVID-19 vaccinations and COVID-19 specific influences). Implications: Findings identified some of the factors that affect pregnant women’s decisions when deciding to have a vaccination or not and how these decisions have been influenced by COVID-19. Findings highlight areas where healthcare professional advice needs to focus, such as the provision of information about the increased vulnerability to illnesses during pregnancy and consideration of opportunistic vaccination at hospital appointments to maximise uptake of vaccinations during pregnancy. Findings of this study will inform the development of an intervention to increase vaccination uptake amongst pregnant women.

Keywords: vaccination, pregnancy, qualitative, interviews, COVID-19

Procedia PDF Downloads 96

Authors: Kelsi Hagerty, Ami Rosen, Aaliyah Heyward, Nadia Ali, Emily Brown, Erin Demo, Yue Guan, Modele Ogunniyi, Brianna McDaniels, Alanna Morris, Kunal Bhatt

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Hereditary transthyretin amyloidosis (hATTR) is a progressive, multi-systemic, and life-threatening disease caused by a disruption in the TTR protein that delivers thyroxine and retinol to the liver. This disruption causes the protein to misfold into amyloid fibrils, leading to the accumulation of the amyloid fibrils in the heart, nerves, and GI tract. Over 130 variants in the TTR gene are known to cause hATTR. The Val122Ile variant is the most common in the United States and is seen almost exclusively in people of African descent. TTR variants are inherited in an autosomal dominant fashion and have incomplete penetrance and variable expressivity. Individuals with hATTR may exhibit symptoms from as early as 30 years to as late as 80 years of age. hATTR is characterized by a wide range of clinical symptoms such as cardiomyopathy, neuropathy, carpal tunnel syndrome, and GI complications. Without treatment, hATTR leads to progressive disease and can ultimately lead to heart failure. hATTR disproportionately affects individuals of African descent; the estimated prevalence of hATTR among Black individuals in the US is 3.4%. Unfortunately, hATTR is often underdiagnosed and misdiagnosed because many symptoms of the disease overlap with other cardiac conditions. Due to the progressive nature of the disease, multi-systemic manifestations that can lead to a shortened lifespan, and the availability of free genetic testing and promising FDA-approved therapies that enhance treatability, early identification of individuals with a pathogenic hATTR variant is important, as this can significantly impact medical management for patients and their relatives. Furthermore, recent literature suggests that TTR genetic testing should be performed in all patients with suspicion of TTR-related cardiomyopathy, regardless of age, and that follow-up with genetic counseling services is recommended. Relatives of patients with hATTR benefit from genetic testing because testing can identify carriers early and allow relatives to receive regular screening and management. Despite the striking prevalence of hATTR among Black individuals, hATTR remains underdiagnosed in this patient population, and germline genetic testing for hATTR in Black individuals seems to be underrepresented, though the reasons for this have not yet been brought to light. Historically, Black patients experience a number of barriers to seeking healthcare that has been hypothesized to perpetuate the underdiagnosis of hATTR, such as lack of access and mistrust of healthcare professionals. Prior research has described a myriad of factors that shape an individual’s decision about whether to pursue presymptomatic genetic testing for a familial pathogenic variant, such as family closeness and communication, family dynamics, and a desire to inform other family members about potential health risks. This study explores these factors through 10 in-depth interviews with patients with hATTR about what factors may be contributing to the underdiagnosis of hATTR in the Black population. Participants were selected from the Emory University Amyloidosis clinic based on having a molecular diagnosis of hATTR. Interviews were recorded and transcribed verbatim, then coded using MAXQDA software. Thematic analysis was completed to draw commonalities between participants. Upon preliminary analysis, several themes have emerged. Barriers identified include i) Misdiagnosis and a prolonged diagnostic odyssey, ii) Family communication and dynamics surrounding health issues, iii) Perceptions of healthcare and one’s own health risks, and iv) The need for more intimate provider-patient relationships and communication. Overall, this study gleaned valuable insight from members of the Black community about possible factors contributing to the underdiagnosis of hATTR, as well as potential solutions to go about resolving this issue.

Keywords: cardiac amyloidosis, heart failure, TTR, genetic testing

Procedia PDF Downloads 97