Search results for: primary care givers

Authors: Sheel Chakraborty

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Modern society in developed countries has distanced itself from the earlier norm of joint family living, and with the increase of economic pressure, parents' availability for their children during their infant years has been consistently decreasing over the past three decades. During the same time, the pre-primary education system - built mainly on the developmental psychology theory framework of Jean Piaget and Lev Vygotsky, has been promoted in the US through the legislature and funding. Early care and education may have a positive impact on young minds, but a growing number of kids facing social challenges in making friendships in their teenage years raises serious concerns about its effectiveness. The survey-based primary research presented here shows a statistically significant number of millennials between the ages of 10 and 25 prefer to build friendships virtually than face-to-face interactions. Moreover, many teenagers depend more on their virtual friends whom they never met. Contrary to the belief that early social interactions in a non-home setup make the kids confident and more prepared for the real world, many shy-natured kids seem to develop a sense of shakiness in forming social relationships, resulting in loneliness by the time they are young adults. Reflecting on George Mead’s theory of self that is made up of “I” and “Me”, most functioning homes provide the required freedom and forgivable, congenial environment for building the "I" of a toddler; however, daycare or preschools can barely match that. It seems social images created from the expectations perceived by preschoolers “Me" in a non-home setting may interfere and greatly overpower the formation of a confident "I" thus creating a crisis around the inability to form friendships face to face when they grow older. Though the pervasive nature of social media can’t be ignored, the non-parental early care and education practices adopted largely by the urban population have created a favorable platform of teen psychology on which social media popularity thrived, especially providing refuge to shy Gen-Z teenagers. This can explain why young adults today perceive social media as their preferred outlet of expression and a place to form dependable friendships, despite the risk of being cyberbullied.

Keywords: digital socialization, shyness, developmental psychology, friendship, early education

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Authors: Weidong Xia, Malgorzata Kolotylo, Xuan Tan

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This study examines the key factors that influence general practitioners’ learning and transfer of specialized arthritis knowledge and self-care techniques to patients during normal patient visits. Drawing on the theory of planed behavior and using matched survey data collected from general practitioners before and after training sessions provided by specialized orthopedic physicians, the study suggests that the general practitioner’s intention to use and transfer learned knowledge was influenced mainly by intrinsic motivation, organizational learning culture and absorptive capacity, but was not influenced by extrinsic motivation. The results provide both theoretical and practical implications.

Keywords: empirical study, healthcare knowledge management, patient self-care, physician knowledge transfer

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Authors: Manal Ahmed, Amal Shehata, Shereen Deeb

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The study's purpose was to determine the effect of the perioperative protocol of care on clinical outcomes among patients undergoing coronary artery bypass graft. Subjects: A sample of 100 adult patients who were planned for coronary artery bypass graft, were selected and divided alternatively and randomly into two equal groups (50 study -50 control).The study was carried out at National heart Institute in Cairo and open heart surgical intensive care unit in Shebin El-Kom Teaching Hospital. Instruments: Four instruments were used for data collection: Interviewing questionnaire, dyspnea analogue scale, Biophysiological measurement instrument, and Compliance assessment sheet. Results: There were statistically significant differences between both groups regarding most respiratory system assessment findings at discharge. More than two-thirds of the study group of the current study had a continuous and regular commitment to diet regimen, which ranked first followed by the compliance of daily living activities then quitting smoking. Conclusions: The perioperative protocol of care has a significant improving effect on respiratory findings, dyspnea degree, duration of mechanical ventilation, length of hospital stay, compliance to diet, therapeutic regimen, daily living activities, and quit smoking among study group undergoing CABG. Recommendations: Perioperative protocol of care should be carried out for CABG patients at open-heart surgical units as well as an illustrative colored booklet about CAD, CABG and perioperative care should be available and distributed to all CABG patients.

Keywords: perioperative, effect, clinical outcomes, coronary artery, bypass graft, protocol of care

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Authors: Chang Liu, Hanwen Zhang, Vikash Sharma, Don Eliseo Lucerno-Prisno III, Emmanuel Yujuico, Maulik Chokshi, Prashanthi Krishnakumar, Bach Xuan Tran, Giang Thu Vu, Kamilla Anna Pinter, Shenglan Tang

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Background and Aims: Globally, many health systems focus on hospital-based healthcare models targeting acute care and disease treatment, which are not effective in addressing the challenges of ageing populations, chronic conditions, multi-morbidities, and increasingly unhealthy lifestyles. Recently, integrated care programs on chronic diseases have been developed, piloted, and implemented to meet such challenges. However, integrated care programs in the Asia-Pacific region vary in the levels of integration from linkage to coordination to full integration. This study aims to identify and analyze existing cases of integrated care in the Asia-Pacific region and identify the facilitators and barriers in order to improve existing cases and inform future cases. Methods: The study is a comparative study, with a combination approach of desk-based research and key informant interviews. The selected countries included in this study represent a good mix of lower-middle income countries (the Philippines, India, Vietnam, and Fiji), upper-middle income country (China), and high-income country (Singapore) in the Asia-Pacific region. Existing integrated care programs were identified through the scoping review approach. Trigger, history, general design, beneficiaries, and objectors were summarized with barriers and facilitators of integrated care based on key informant interviews. Representative case(s) in each country were selected and comprehensively analyzed through deep-dive case studies. Results: A total of 87 existing integrated care programs on chronic diseases were found in all countries, with 44 in China, 21 in Singapore, 12 in India, 5 in Vietnam, 4 in the Philippines, and 1 in Fiji. 9 representative cases of integrated care were selected for in-depth description and analysis, with 2 in China, the Philippines, and Vietnam, and 1 in Singapore, India, and Fiji. Population aging and the rising chronic disease burden have been identified as key drivers for almost all the six countries. Among the six countries, Singapore has the longest history of integrated care, followed by Fiji, the Philippines, and China, while India and Vietnam have a shorter history of integrated care. Incentives, technologies, education, and performance evaluation would be crucial for developing strategies for implementing future programs and improve already existing programs. Conclusion: Integrated care is important for addressing challenges surrounding the delivery of long-term care. To date, there is an increasing trend of integrated care programs on chronic diseases in the Asia-Pacific region, and all six countries in our study set integrated care as a direction for their health systems transformation.

Keywords: integrated healthcare, integrated care delivery, chronic diseases, Asia-Pacific region

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Authors: Susanne Ferschl, Peter Holzmüller, Elisabeth Wacker

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Ageing populations, advances in medical sciences and digitalization, diversity and social disparities, as well as the increasing need for skilled healthcare professionals, are challenging healthcare systems around the globe. To address these challenges, future healthcare systems need to center on human needs taking into account the living environments that shape individuals’ knowledge of and opportunities to access healthcare. Moreover, health should be considered as a common good and an integral part of securing livelihoods for all people. Therefore, the adoption of a systems approach, as well as inter-disciplinary and inter-sectoral cooperation among healthcare providers, are essential. Additionally, the active engagement of target groups in the planning and design of healthcare structures is indispensable to understand and respect individuals’ health and livelihood needs. We will present the research project b4 – identifying needs | building bridges | developing health care in the social space, which is situated within this reasoning and accompanies the cross-sectoral cooperation project Brückenschlag (building bridges) in a Bavarian district. Brückenschlag seeks to explore effective ways of health care linking university medicine (Maximalversorgung | maximum care) with regional inpatient, outpatient, rehabilitative, and preventive care structures (Regionalversorgung | regional care). To create advantages for both (potential) patients and the involved cooperation partners, project b4 qualitatively assesses needs and motivations among professionals, population groups, and political stakeholders at individual and collective levels. Besides providing an overview of the project structure as well as of regional population and healthcare characteristics, the first results of qualitative interviews conducted with different health experts will be presented. Interviewed experts include managers of participating hospitals, nurses, medical specialists working in the hospital and registered doctors operating in practices in rural areas. At the end of the project life and based on the identified factors relevant to the success -and also for failure- of participatory cooperation in health care, the project aims at informing other districts embarking on similar systems-oriented and human-centered healthcare projects. Individuals’ health care needs in dependence on the social space in which they live will guide the development of recommendations.

Keywords: cross-sectoral collaboration in health care, human-centered health care, regional health care, individual and structural health conditions

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Authors: Isabelle Gobatto

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

Keywords: Africa, care, ethics, poverty

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Authors: K. Pankaj, R. K. Chaudhary, B. P. Mishra, S. Kochar

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Introduction: Consultation-Liaison psychiatry is a branch of psychiatry that includes clinical service, teaching and research. A consultation-liaison psychiatrist plays a role in having an expert opinion and linking the patients to other medical professionals and the patient’s bio-psycho-social aspects that may be leading to his/her symptoms. Consultation-Liaison psychiatry has been recognised as 'The guardian of the holistic approach to the patient', underlining its pre-eminent role in the management of patients who are admitted in a tertiary care hospital. Aims/ Objectives: The aim of the study was to analyse the utilization of psychiatric services and reasons for referrals in a tertiary care hospital. Materials and Methods: The study was done in a tertiary care hospital. The study included all the cases referred from different Inpatient wards to the psychiatry department for consultation. The study was conducted on 300 patients over a 3 month period. International classification of diseases 10 was used to diagnose the referred cases. Results: The majority of the referral was from the Medical Intensive care unit (22%) followed by general medical wards (18.66%). Majority of the referral was taken for altered sensorium (24.66%), followed by low mood or unexplained medical symptoms (21%). Majority of the referrals had a diagnosis of alcohol withdrawal syndrome (21%) as per International classification of diseases criteria, followed by unipolar Depression and Anxiety disorder (~ 14%), followed by Schizophrenia (5%) and Polysubstance abuse (2.6%). Conclusions: Our study concludes the importance of utilization of consultation-liaison psychiatric services. Also, the study signifies the need for sensitization of our colleagues regarding psychiatric sign and symptoms from time to time and seek psychiatric consult timely to decrease morbidity.

Keywords: consultation-liaison, psychiatry, referral, tertiary care hospital

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Authors: Nditsheni Ramakuela, Sonto Maputle, Base Khoza, Augustine Tugli

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Inadequate health literacy can cause difficulties in understanding and compliance to treatment plan. With diabetic condition, self-care activities include behaviours of following a diet plan, avoiding high fat foods, increased exercise, self-glucose monitoring, and foot care. Patients with poor health literacy have difficulty interpreting medication warning labels, following directions on a prescription label and identifying their medications. Difficulties in understanding and performing self-care and health-related activities may ultimately lead to poor health outcomes. The study explored and described factors affecting health literacy and self-care to diabetic regimen by female patients at selected hospital in Limpopo Province of South Africa. Qualitative and explorative research design was used. Female patients who were admitted and diagnosed with diabetes in female medical ward constituted the study population. Non-probability, purposive sampling was used to select 20 female patients diagnosed with diabetes, who were above 18 years and admitted during April–November 2014. An in-depth face-to-face, unstructured interview was used to collect data. Data were analysed using open coding method. Measures to ensure trustworthiness and ethical considerations were adhered to. Findings revealed factors affecting health literacy for diabetic self-care activities amongst patients were; patient, family, disease and facility related. Proposed recommendations were; to strengthen diabetes education and patient-provider partnership. This is important and must be transferred to strengthen self-care activities to fully benefit the patient.

Keywords: compliance, diabetes mellitus, diabetic regimen, health literacy, self activities

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Authors: E. O. Egieyeh, N. Butler, R. Coetzee, M. Van Huyssteen, A. Bheekie

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Background: High rate of maternal and child mortality is a global concern. Nationally, it constitutes one of South Africa’s quadruple burdens of diseases. Pharmacists have a crucial role in maternal and child health care delivery and as such should be equipped with adequate knowledge and skill required to contribute to maternal and child well-being. The International Pharmaceutical Federation statement of policy (2013) outlines pharmacist-led interventions in accordance with the World Health Organisation’s interventions in maternal, new-born and child health care. The South African Pharmacy Council’s guideline on Good Pharmacy Practice (2010) also stipulates the minimum standards required to participate in reproductive, maternal and child care. Pharmacy schools are obliged to train pharmacy students to meet priority health needs of the population so that graduates are ‘fit for purpose’. The purpose of the study is to evaluate the knowledge and skill of final year pharmacy students at a university in South Africa to determine their preparedness to contribute effectively to maternal and child health care. Method: A quantitative, descriptive, non-randomized baseline study was conducted among the final year students at the School of Pharmacy. Data was collected using a questionnaire designed in sections to assess knowledge of contraception, maternal and child health directed at the primary care level and framed within the scope of practice required of an entry-level generalist pharmacist. Participants’ skill in infant growth assessment was assessed in a section of the questionnaire in a written format. Participants ticked the topics they had been exposed to on a curriculum content assessment tool which was not graded. A pilot study examined the clarity and suitability of question items, and duration to complete the questionnaire. A score of 50% in each section of the questionnaire indicated a pass. The questionnaire was delivered in campus lecture venue. Results: Of the 102 students in final year, 53 (52%) students consented to participate in the study. Only 13.2% of participants scored above 50% in each section. Forty five (85%) participants scored above 50% in the contraception section while 40 (75%) scored less than 50% in the skills assessment. Less than half (45.3%) of the participants had a total score above 50%. Being a parent or working part-time as pharmacist assistance did not have any influence on the performance of the participants. Evaluation of participants’ curriculum content exposure showed differences in exposure to the various topics. Exposure to contraception teaching received the most recognition. Conclusion: Maternal and child health curriculum content should be reviewed at the university to enhance the knowledge and skill of pharmacy graduates.

Keywords: final year pharmacy students, knowledge and skill, maternal and child health, South Africa

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Authors: Wanwisa Deenin, Abdulhadee Yakoh, Chahya Kreangkaiwal, Orawon Chailapakul, Kanitha Patarakul, Sudkate Chaiyo

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LipL32 is an outer membrane protein present only on pathogenic Leptospira species, which are the causative agent of leptospirosis. Leptospirosis symptoms are often misdiagnosed with other febrile illnesses as the clinical manifestations are non-specific. Therefore, an accurate diagnostic tool for leptospirosis is indeed critical for proper and prompt treatment. Typical diagnosis via serological assays is generally performed to assess the antibodies produced against Leptospira. However, their delayed antibody response and complicated procedure are undoubtedly limited the practical utilization especially in primary care setting. Here, we demonstrate for the first time an early-stage detection of LipL32 by an integrated lateral-flow immunoassay with electrochemical readout (eLFIA). A ferrocene trace tag was monitored via differential pulse voltammetry operated on a smartphone-based device, thus allowing for on-field testing. Superior performance in terms of the lowest detectable limit of detection (LOD) of 8.53 pg/mL and broad linear dynamic range (5 orders of magnitude) among other sensors available thus far was established. Additionally, the developed test strip provided a straightforward yet sensitive approach for diagnosis of leptospirosis using the collected human sera from patients, in which the results were comparable to the real-time polymerase chain reaction technique.

Keywords: leptospirosis, electrochemical detection, lateral flow immunosensor, point-of-care testing, early-stage detection

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Authors: E. Vazquez-Santacruz, M. Gamboa-Zuniga

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In this paper, we show a methodology for bodies classification in lying state using HOG descriptors and pressures sensors positioned in a matrix form (14 x 32 sensors) on the surface where bodies lie down. it will be done in real time. Our system is embedded in a care robot that can assist the elderly patient and medical staff around to get a better quality of life in and out of hospitals. Due to current technology a limited number of sensors is used, wich results in low-resolution data array, that will be used as image of 14 x 32 pixels. Our work considers the problem of human posture classification with few information (sensors), applying digital process to expand the original data of the sensors and so get more significant data for the classification, however, this is done with low-cost algorithms to ensure the real-time execution.

Keywords: real-time classification, sensors, robots, health care, elderly patients, artificial intelligence

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Authors: V. Emery David Jr., J. Wenchao, D. Mmereki, Y. John, F. Heriniaina

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Healthcare waste management continues to present an array of challenges for developing countries, and Liberia is of no exception. There is insufficient information available regarding the generation, handling, and disposal of health care waste. This face serves as an impediment to healthcare management schemes. The specific objective of this study is to present an evaluation of the current health care management practices in Liberia. It also presented procedures, techniques used, methods of handling, transportation, and disposal methods of wastes as well as the quantity and composition of health care waste. This study was conducted as an investigative case study, covering three different health care facilities; a hospital, a health center, and a clinic in Monrovia, Montserrado County. The average waste generation was found to be 0-7kg per day at the clinic and health center and 8-15kg per/day at the hospital. The composition of the waste includes hazardous and non-hazardous waste i.e. plastic, papers, sharps, and pathological elements etc. Nevertheless, the investigation showed that the healthcare waste generated by the surveyed healthcare facilities were not properly handled because of insufficient guidelines for separate collection, and classification, and adequate methods for storage and proper disposal of generated wastes. This therefore indicates that there is a need for improvement within the healthcare waste management system to improve the existing situation.

Keywords: disposal, healthcare waste, management, Montserrado County, Monrovia

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Authors: Chick Loveline Ayoh Epse Ndi

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Our cultural stance has deep implications for the psychological and physical well-being of the old. Cameroon is still rooted on the traditional belief that stipulates that; the aged are best catered for in the family setting where the children and grandchildren are supposed to give in return for services invested on them by the former. This is why up till date, there are no “Rest Homes” or “Convalescent hospitals” despite the rising challenges faced by the aged in this context. Beside the special measure set aside to cater for the aged, such as “Rest Homes” for the healthy, “Convalescent hospitals” are created set to cater for the health of the aged in the Western context with other facilities such as geriatric units. The health care practitioners are aware of aging diseases and have trained human resources like Gerontologists to cater for the aged and aging diseases. Meanwhile, in Africa and Cameroon in particular, such infrastructural and human resources are still to be considered in the health care system. It can be assumed that the aged and aging diseases are still to be considered in the health care system in this context. This is why we talk of therapeutic nihilism, where the aged are mixed up with other categories of patients with no special attention given to them. This qualitative study carried out in the Yaounde, the capital city of Cameroon, with their best referent hospitals, reveal that; the aged and aging diseases are still a myth in this context. Data collected in both private and public health institutions show that there is only one public institution in Cameroon that has a geriatric unit with no specialists. Patients who aretreated in this unit are considered as aged with terminal diseases that need palliative care and not intensive care. Cameroon is still lacking in terms of health care to the aged and ageing diseases. Like other patients, the aged are treated with a lot of laxity and no value. There is an emergency to create special health care units for geriatrics and and train gerontologist. Mentally or physically ill aged faced medical rational with psychodynamic treatment considered as waste of time. The aged are less likely to be regarded salvageable when they enter a hospital in serious conditions due to the lack of specialists and geriatric units for them. The implication of this study is to sensitization the stake holders for an urgent need to extend special care units for the aged and aging diseases in this context.

Keywords: challeng, therapy, agtng, diseases cameroon

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Authors: Amanda Aliende da Matta

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This communication presents an aspect of phenomenon selection in an applied hermeneutic phenomenology study on care and vulnerability: the need to consider it as a situated universal. For that, we will first present the study and its methodology. Secondly, we will expose the need to understand phenomena as situation-defined, incorporating feminist thought. In an informatics class for 14 year olds, we explained the exercise: students have to make a 5 slide presentation about a topic of their choice. A does it on streetwear, B on Cristiano Ronaldo, C on Marvel, but J did it on Down Syndrome. Introducing it to the class, J explains the physical and cognitive differences caused by trisomy; when asked to explain it further, he says: "they are angels, teacher," and shows us a poster on his cellphone that says: if you laugh at a different child he will laugh with you because his innocence outweighs your ignorance. The anecdote shows, better than any theoretical explanation, something that some vulnerable people have; something beautiful and special but difficult to define. Let's call this something caring. The research has the main objective of accounting for the experience of caregiving in vulnerability, and it will be carried out with Applied Hermeneutic Phenomenology (AHP). The method's objective is to investigate the lived human experience in its pre-reflexive dimension to know its meaning structures. Contrary to other research methods, AHP does not produce theory about a specific context but seeks the meaning of the lived experience, in its characteristic of human experience. However, it is necessary that we understand care as defined in a concrete situation. We cannot start the research with an a priori definitive concept of care, or we would fall into the mistake of closing ourselves to only what we already know, as explained by Levinas. We incorporate, then, the notion of situated universals. Loyal to phenomenology, the definition of the phenomenon should start with an investigation of the word's etymology: the word cura, in its etymological root, means care. And care comes from the Latin word cogitātus/cōgĭto, which means "to pursue something in mind" and "to consider thoroughly." The verb cōgĭto, meanwhile, is composed of co- (altogether) and agitare (to deal with or think committedly about something, to concern oneself with) / ăgĭto (to set in motion, to move). Care, therefore, has in its origin a meditation on something, a concern about something, a verb that has a sense of action and movement. To care is to act out of concern for something/someone. This etymology, though, is not the final definition of the phenomenon, but only its skeleton. It needs to be embodied in the concrete situation to become a possible lived experience. And that means that the lived experience descriptions (LEDs) should be selected by taking into consideration how and if care was engendered in that concrete experience. Defining the phenomenon has to take into consideration situated knowledge.

Keywords: applied hermeneutic phenomenology, care ethics, hermeneutics, phenomenology, situated universalism

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Authors: Fujia Yang

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Alongside technological innovation, the current “double reduction” policy and English Curriculum Standards for Compulsory Education in China both emphasise and encourage appropriately integrating educational technologies into the classroom. Therefore, schools are increasingly using digital means to engage students in English reading, but the impact of such technologies on Chinese pupils’ reading achievement remains unclear. To serve as a reference for reforming English reading education in primary schools under the double reduction policy, this study investigates the effects and primary influencing factors of a specific reading programme, Accelerated Reader (AR), on Chinese primary school students’ reading achievement. A quantitative online survey was used to collect 37 valid questionnaires from teachers, and the results demonstrate that, from teachers’ perspectives, the AR program seemed to positively affect students’ reading achievement by recommending material at the appropriate reading levels and developing students’ reading habits. Although the reading enjoyment derived from the AR program does not directly influence students’ reading achievement, these factors are strongly correlated. This can be explained by the self-paced, independent learning AR format, its high accuracy in predicting reading level, the quiz format and external motivation, and the importance of examinations and resource limitations in China. The results of this study may support reforming English reading education in Chinese primary schools.

Keywords: educational technology, reading programme, primary students, accelerated reader, reading effects

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Authors: Ella Tyuryumina, Alexey Neznanov

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This study is an attempt to obtain reliable data on the natural history of breast cancer growth. We analyze the opportunities for using classical mathematical models (exponential and logistic tumor growth models, Gompertz and von Bertalanffy tumor growth models) to try to describe growth of the primary tumor and the secondary distant metastases of human breast cancer. The research aim is to improve predicting accuracy of breast cancer progression using an original mathematical model referred to CoMPaS and corresponding software. We are interested in: 1) modelling the whole natural history of the primary tumor and the secondary distant metastases; 2) developing adequate and precise CoMPaS which reflects relations between the primary tumor and the secondary distant metastases; 3) analyzing the CoMPaS scope of application; 4) implementing the model as a software tool. The foundation of the CoMPaS is the exponential tumor growth model, which is described by determinate nonlinear and linear equations. The CoMPaS corresponds to TNM classification. It allows to calculate different growth periods of the primary tumor and the secondary distant metastases: 1) ‘non-visible period’ for the primary tumor; 2) ‘non-visible period’ for the secondary distant metastases; 3) ‘visible period’ for the secondary distant metastases. The CoMPaS is validated on clinical data of 10-years and 15-years survival depending on the tumor stage and diameter of the primary tumor. The new predictive tool: 1) is a solid foundation to develop future studies of breast cancer growth models; 2) does not require any expensive diagnostic tests; 3) is the first predictor which makes forecast using only current patient data, the others are based on the additional statistical data. The CoMPaS model and predictive software: a) fit to clinical trials data; b) detect different growth periods of the primary tumor and the secondary distant metastases; c) make forecast of the period of the secondary distant metastases appearance; d) have higher average prediction accuracy than the other tools; e) can improve forecasts on survival of breast cancer and facilitate optimization of diagnostic tests. The following are calculated by CoMPaS: the number of doublings for ‘non-visible’ and ‘visible’ growth period of the secondary distant metastases; tumor volume doubling time (days) for ‘non-visible’ and ‘visible’ growth period of the secondary distant metastases. The CoMPaS enables, for the first time, to predict ‘whole natural history’ of the primary tumor and the secondary distant metastases growth on each stage (pT1, pT2, pT3, pT4) relying only on the primary tumor sizes. Summarizing: a) CoMPaS describes correctly the primary tumor growth of IA, IIA, IIB, IIIB (T1-4N0M0) stages without metastases in lymph nodes (N0); b) facilitates the understanding of the appearance period and inception of the secondary distant metastases.

Keywords: breast cancer, exponential growth model, mathematical model, metastases in lymph nodes, primary tumor, survival

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Authors: Ssekamanya, Mastura Badzis, Khamsiah Ismail, Dayang Shuzaidah Bt Abduludin

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With rising incidents of school violence worldwide, educators and researchers are trying to understand and find ways to enhance the safety of children at school. The purpose of this study was to investigate the extent to which the demographic variables of gender, age, length of service, position, academic qualification, and school location predicted teachers’ awareness about school safety practices in Malaysian primary schools. A stratified random sample of 380 teachers was selected in the central Malaysian states of Kuala Lumpur and Selangor. Multiple regression analysis revealed that none of the factors was a good predictor of awareness about school safety training, delivery methods of school safety information, and available school safety programs. Awareness about school safety activities was significantly predicted by school location (whether the school was located in a rural or urban area). While these results may reflect a general lack of awareness about school safety among primary school teachers in the selected locations, a national study needs to be conducted for the whole country.

Keywords: school safety awareness, predictors of school safety, multiple regression analysis, malaysian primary schools

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Authors: Sigrid James

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Purpose and Background: Despite a global policy push for deinstitutionalization, residential care for children and youth remains a relevant and highly utilized out-of-home care option in many countries, fulfilling functions of care and accommodation as well as education and treatment. While many youths are placed in residential care programs temporarily or during times of transition, some still spend years in programs that range from small group homes to large institutions. How residential care is used and what function it plays in child welfare systems is influenced by a range of factors. Among them are sociocultural and historical developments, available resources for child welfare, cultural notions about family, a lack of family-based placement alternatives as well as a belief that residential care can be beneficial to children. As part of a larger study that examined differences in residential care across 16 countries along a range of dimensions, this paper reports findings on utilization rates of residential care, i.e., the proportion of out out-of-home care dedicated to residential care relative to forms of family-based foster care. Method: Using an embedded multiple-case design study approach where a country represents a case, residential care in 16 countries was studied and compared. The comparison was focused on countries with developed social welfare systems and included Spain, Denmark, Germany, Ireland, the Netherlands, England, Scotland, Australia, Italy, Israel, Argentina, Portugal, Finland, France, the United States and Canada. Experts from each country systematically collected data on residential care based on a common matrix developed by the author. A range of sources were accessed depending on the information sought, including administrative data, government reports, research studies, etc. Utilization rates were mostly drawn from administrative data or government reports. While denominators may slightly differ, available data allowed for meaningful comparisons. Beyond descriptive data on utilization rates, analysis allowed to also capture trends in utilization (increasing, decreasing, stable) as well as the rate change. Results: Results indicate high variability in the utilization of residential care, covering the entire spectrum from a low of 7% to a high of 97%, with most countries falling somewhere in between. Three utilization categories were identified: high-users of residential care (Portugal, Argentina and Israel), medium-users (Denmark, France, Italy, Finland, Spain, Netherlands, Germany), and low-users (England, Scotland, Ireland, Canada, Australia, the United States). A number of countries experienced drastic reductions in residential care during the past few years (e.g. US), while others have seen stable rates (e.g., Portugal) or even increasing rates (e.g., Spain). Conclusions: Multiple contextual factors have to be considered when interpreting findings. For instance, countries with low residential care rates have, in most cases, undergone recent legislative changes to drastically reduce residential care. In medium-utilization countries, residential care reforms seem to be primarily focused on improving standards and, thus, the quality of care. High utilization countries generally face serious obstacles to implementing alternative family-based forms of out-of-home care. Cultural acceptance of residential or foster care and notions of professionalism also appear to play an important role in explaining variability in utilization.

Keywords: residential youth care, child welfare, case study, cross-national comparative research

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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: Magdaléna Náplavová, Tomáš Ludík, Petr Hrůza, František Božek

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The use of IT equipment has become a part of every day. However, each device that is part of cyberspace should be secured against unauthorized use. It is very important to know the basics of these security devices, but also the basics of safe conduct their owners. This information should be part of every curriculum computer science education in primary and secondary schools. Therefore, the work focuses on the education of pupils in primary and secondary schools on the Internet. Analysis of the current state describes approaches to the education of pupils in security issues on the Internet. The paper presents a questionnaire-based survey which was carried out in the Czech Republic, whose task was to ascertain the level of opinion pupils in primary and secondary schools on the issue of communication in social networks. The research showed that awareness of socio-pathological phenomena on the Internet environment is very low. Based on the results it was proposed appropriate ways of teaching to this issue and its inclusion a proposal of curriculum for primary and secondary schools.

Keywords: information security, cyber space, general awareness, questionnaire, socio-pathological phenomena, educational system

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Authors: Abdulkabir Abdullahi

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The paper is a pre-use evaluation of grammar activities in three primary English course books (two of which are international primary English course books and the other a popular Nigerian primary English course book). The titles are - Cambridge Global English, Collins International Primary English, and Nigeria Primary English – Primary English. Grammar points and grammar activities in the three-course books were identified, grouped, and evaluated. The grammar activity which was most common in the course books, simple past tense, was chosen for evaluation, and the units which present simple past tense activities were selected to evaluate the extent to which the treatment of simple past tense in each of the course books help the young learners of English as a second language in Nigeria, aged 8 – 11, level A1 to A2, who lack the basic grammatical knowledge, to know grammar/communicate effectively. A bespoke checklist was devised, through the modification of existing checklists for the purpose of the evaluation, to evaluate the extent to which the grammar activities promote the communicative effectiveness of Nigerian learners of English as a second language. The results of the evaluation and the analysis of the data reveal that the treatment of grammar, especially the treatment of the simple past tense, is evidently insufficient. While Cambridge Global English’s, and Collins International Primary English’s treatment of grammar, the simple past tense, is underpinned by state-of-the-art theories of learning, language learning theories, second language learning principles, second language curriculum-syllabus design principles, grammar learning and teaching theories, the grammar load is insignificantly low, and the grammar tasks do not promote creative grammar practice sufficiently. Nigeria Primary English – Primary English, on the other hand, treats grammar, the simple past tense, in the old-fashioned direct way. The book does not favour the communicative language teaching approach; no opportunity for learners to notice and discover grammar rules for themselves, and the book lacks the potency to promote creative grammar practice. The research and its findings, therefore, underscore the need to improve grammar contents and increase grammar activity types which engage learners effectively and promote sufficient creative grammar practice in EFL and ESL material design and development.

Keywords: evaluation, activity, second language, activity-types, creative grammar practice

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Authors: Nelson Igaba, C. Onaga, S. Hlongwane

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Background: Medical Male Circumcision (MMC) is part of a comprehensive HIV prevention strategy. The quality of MMC done at Right To Care (RtC) sites is maintained by Continuous Quality Improvement (CQI) based on findings of assessments by internal and independent external assessors who evaluate such parameters as the quality of the surgical procedure, infection control, etc. There are 12 RtC MMC teams in Mpumalanga, two of which are headed by Medical Officers and 10 by Clinical Associates (Clin A). Objectives: To compare the quality (i) of care rendered at doctor headed sites (DHS) versus Clin A headed sites (CHS); (ii) of CQI assessments (external versus internal). Methodology: A retrospective review of data from RightMax™ (a novel RtC data management system) and CQI reports (external and internal) was done. CQI assessment scores of October 2015 and October 2016 were taken as the baseline and latest respectively. Four sites with 745-810 circumcisions per annum were purposively selected; the two DHS (group A) and two CHS (group B). Statistical analyses were conducted using R (2017 version). Results: There were no significant difference in latest CQI scores between the two groups (DHS and CHS) (Anova, F = 1.97, df = 1, P = 0.165); between internal and external CQI assessment scores (Anova, F = 2.251, df = 1, P = 0.139) or among the individual sites (Anova, F = 1.095, df = 2, P = 0.341). Of the total of 16 adverse events reported by the four sites in the 12 months reviewed (all were infections), there was no statistical evidence that the documented severity of the infection was different for DHS and CHS (Fisher’s exact test, p-value = 0.269). Conclusion: At RtC VMMC sites in Mpumalanga, internal and external/independent CQI assessments are comparable, and quality of care of VMMC is standardized with the performance of well-supervised clinical associates comparing well with those of medical officers.

Keywords: adverse events, Right to Care, male medical circumcision, continuous quality improvement

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Authors: Celine Shi Ying Lee, Jong Jian Lee

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Background: Infectious keratitis is one of the leading causes of blindness worldwide. Prompt treatment with effective medication will control the infection early, preventing corneal scarring and visual loss. fluoroquinolones ophthalmic medication is used because of its broad-spectrum properties, potency, good intraocular penetration, and low toxicity. The study aims to evaluate the treatment outcome of corneal ulcers using Levofloxacin 1.5% ophthalmic solution (LVFX) with adjuvant oral ciprofloxacin when indicated and apply this treatment strategy in primary health care as first-line treatment. Methods: Patients with infective corneal ulcer treated in an eye center were recruited. Inclusion criteria includes Corneal infection consistent with bacterial keratitis, single or multiple small corneal ulcers. Treatment regime: LVFX hourly for the first 2 days, 2 hourly from the 3rd day, and 3 hourly on the 5th day of review. Adjuvant oral ciprofloxacin 500mg BD was administered for 5 days if there were multiple corneal ulcers or when the location of the cornea ulcer was central or paracentral. Results: 47 subjects were recruited. There were 16 (34%) males and 31 (66%) females. 40 subjects (85%) were contact lens (CL) related to corneal ulcer, and 7 subjects (15%) were non-contact lens related. 42 subjects (89%) presented with one ulcer, of which 20 of them (48%) needed adjuvant therapy. 5 subjects presented with 2 or 3 ulcers, of which 3 needed adjuvant therapy. A total of 23 subjects (49%) was given adjuvant therapy (oral ciprofloxacin 500mg BD for 5 days).21 of them (91%) were CL related. All subjects recovered fully, and the average duration of treatment was 3.7 days, with 49% of the subjects resolved on the 3rd day, 38% on the 5thday of and 13% on the 7thday. All subjects showed symptoms of relief of pain, light-sensitivity, and redness on the 3rd day with full visual recovery post-treatment. No adverse drug reactions were recorded. Conclusion: Our treatment regime demonstrated good clinical outcome as first-line treatment for corneal ulcers. A corneal ulcer is a common eye condition in Singapore, mainly due to CL wear. Pseudomonas aeruginosa is the most frequent and potentially sight-threatening pathogen involved in CL related corneal ulcer. Coagulase-negative Staphylococci, Staphylococcus aureus, and Streptococcus Pneumoniae were seen in non-CL users. All these bacteria exhibit good sensitivity rates to ciprofloxacin and levofloxacin. It is therefore logical in our study to use LVFX Eyedrops and adjuvant ciprofloxacin oral antibiotics when indicated as first line treatment for most corneal ulcers. Our study of patients, both CL related and non-CL related, have shown good clinical response and full recovery using the above treatment strategy. There was also a full restoration of visual acuity in all the patients. Eye-trained primary Healthcare practitioners can consider adopting this treatment strategy as first line treatment in patients with corneal ulcers. This is relevant during the COVID pandemic, where hospitals are overwhelmed with patients and in regions with limited access to specialist eye care. This strategy would enable early treatment with better clinical outcome.

Keywords: corneal ulcer, levofloxacin hydrate, treatment strategy, ciprofloxacin

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Authors: Petcharat Kerdonfag, Supunnee Thrakul

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School health services through regular screening of school students’ health status have been the main responsibility for community or school health nurses. The purposes of these retrospective study were to assess and compare health problems between government and private primary school students in the central region of Thailand. The data were collected from the school health records in October at the end of the first semester in the academic year 2018. Two thousand and fifty primary school health records from government and private primary schools were gathered to assess health problems regarding anthropometric measurements, physical examination/personal hygiene, and clinical findings for this study. Descriptive statistics and Chi-square were used to be analyzed. The results revealed that health problems of all the school students remained high magnitude. The five top ranks for prevalence rate of health problems were dental caries (36.6%), visual acuity problem (27.7%), over-nutrition (16.8%), head lice (12.8%), and under-nutrition (6.8%), respectively. However, when compared between government and private schools among five health problems; dental caries (55.0% vs 19.9%), visual acuity problem (23.1% vs 31.9%), over-nutrition (20.2% vs 13.8%), head lice (26.5% vs 0.3%), and under-nutrition (10.6% vs 3.4%) with Chi-square analysis, there were significantly different (p < .001). The problem of visual acuity seems to be more serious in private schools while other health problems tend to be more critical in government schools. The findings have suggested that parents who have children in the private primary schools should pay more attention to visual health defects whereas parents with children in the government school should pay more vigilance regards to hygiene and health behavior problems.

Keywords: community health nursing, school health service, health status, primary school children

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Authors: Kirsty Biggs, Peter Larsen-Disney

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Background: The UK cervical screening programme significantly reduces cancer mortality through the early detection of abnormal cells. Despite this, over a quarter of eligible women choose not to attend their appointment. Objective: To qualitatively explore patients’ barriers to attending cervical smear appointments and identify key trends of cervical screening behaviour, knowledge, and attitudes in primary and secondary care. Methods: A cross-sectional study was conducted to evaluate smear services in Brighton and Hove using questionnaires in general practice and colposcopy. 226 patients participated in the voluntary questionnaire between 10/11/2017 and 02/02/2018. 118 patients were recruited from general practice surgeries and 108 from the colposcopy department. Women were asked about their smear knowledge, self-perceived risks factors, prior experiences and reasons for non-attendance. Demographic data was also collected. Results: Approximately a third of women did not engage in smear testing services. This was consistent across primary and secondary care groups. Over 90% were aware of the role of the screening process in relation to cervical cancer; however, over two thirds believed the smear was also a tool to screen for other pathologies. The most commonly cited reasons for non-attendance were negative emotions or previous experiences. Inconvenient appointment times were also commonly described. In a comparison of attenders versus non-attenders previous negative experiences (p < 0.01) and number of identified risk factors (p = 0.02) were statistically significant with non-attenders describing more prior negative smears and identifying more risk factors. Smear knowledge, risk perception and perceived importance of screening were not significant. Negative previous experiences were described in relation to poor bedside manner, pain, embarrassment and staff competency. Conclusions: In contrary to the literature, our white Caucasian cohort experienced significant barriers to accessing smear services. Women’s prior negative experiences are overriding their perceived importance to attend the screening programme; therefore, efforts need to focus on improving clinical experiences through auditing tools, training and providing a supportive appointment setting. Positive changes can also be expected by improving appointment availabilities with extended hours and self-booking systems.

Keywords: barriers, cervical, Papanicolaou, screening, smear

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Authors: Xiaohan Gao, Kai Liu

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As essential components of urban areas, primary and secondary schools are extensively distributed throughout various regions of the city. During times of urban disturbances, these schools become direct carriers of complex disruptions. Therefore, fostering resilient schools becomes a pivotal driving force to promote high-quality urban development and a cornerstone of sustainable school growth. This paper adopts the theory of spatial resilience and focuses on primary and secondary schools in Chinese cities as the research subject. The study first explores the potential disturbance risks faced by schools and delves into the origin and concept of spatial resilience in the educational context. Subsequently, the paper conducts a meta-analysis to characterize the spatial resilience of primary and secondary schools and devises a spatial resilience planning mechanism. Drawing insights from exemplary cases both domestically and internationally, the research formulates spatial and planning resilience strategies for primary and secondary schools to cope with perturbations. These strategies encompass creating an overall layout that integrates harmoniously with nature, promoting organic growth in the planning structure, fostering ecological balance in the landscape system, and enabling dynamic adaptation in architectural spaces. By cultivating the capacity for "resistance-adaptation-transformation," these approaches support sustainable development within the school space. The ultimate goal of this project is to establish a cohesive and harmonious layout that advances the sustainable development of primary and secondary schools while contributing to the overall resilience of urban areas.

Keywords: complex disruption, primary and secondary schools, spatial resilience, sustainable development

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Authors: Robert John Godby

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To be responsive now and in the future, workplaces must address the demands of multicultural teams as they become more common elements of the global labor force. This is especially the case for aged care due to the aging population, industry growth and migrant recruitment. This research identifies influences on and improvements for learning in these environments. Its unique contribution is to illuminate how culturally diverse workplaces can work and learn together more effectively. A mixed-methods approach was used to gather data about this topic in two phases. Firstly, the research methods included a survey of 102 aged care workers around Australia from two multi-site aged care organisations. The questionnaire elicited both quantitative and qualitative data about worker characteristics and perspectives on working and learning in aged care. Secondly, a case study of one aged care worksite was formulated drawing on worksite information and interviews with workers. A review of the literature suggests that learning in multicultural work environments is influenced by three main factors: 1) the individual workers themselves, 2) their interaction with each other and 3) the environment in which they work. There are various accounts of these three factors, how they are manifested and how they lead to a change in workers’ disposition, knowledge, or expertise when confronted with new circumstances. The study has found that a key individual factor influencing learning is cultural background. Their unique view of the world was shown to affect their approach to both their work and co-working. Interactional factors suggest that the high requirement for collaboration in aged care positively supports learning in this context; however, it can be hindered by cultural bias and spoken accent. The study also found that environmental factors, such as disruptions caused by the pandemic, were another key influence. For example, the need to wear face masks hindered the communication needed for workplace learning. This was especially challenging due to the diverse language backgrounds and abilities within the teams. Potential improvements for learning in multicultural aged care work environments were identified. These include more frequent and structured inter-peer learning (e.g. buddying), communication training (e.g. English language usage for both native and non-native speaking workers) and support for cross-cultural habitude (e.g. recognizing and adapting to cultural differences). Workplace learning in cross-cultural aged care environments is an area that is not extensively dealt with in the literature. This study addresses this gap and holds the potential to contribute practical insights to aged care and other diverse industries.

Keywords: cross-cultural learning, learning in aged care, migrant learning, workplace learning

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Wint Wint Thu, Htet Ko Ko Win, Myat Mon San, Zaw Lin Tun, Nandar Than Aye, Khin Nyein Myat, Hayman Nyo Oo, Nay Aung Lin, Kusum Thapa, Kyaw Htet Aung

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Background: In Myanmar, the intense political instability happened to start in Feb-2021, while the COVID-19 pandemic waves are also threatening the public health system, which subsequently led to severe health sector crisis, including difficulties in accessing maternal and newborn health care for vulnerable women and children. The Remote Pregnant and Newborn Care (RPNC) uses a telehealth approach United States Agency for International Development (USAID)-funded Essential Health Project. Implementation: The Remote Pregnant and Newborn Care (RPNC) service has adapted to the MNCH needs of vulnerable pregnant women and was implemented to mitigate the risk of limited access to essential quality MNH care in Yangon, Myanmar, under women, and the project trained 13 service providers on a telehealth care package for pregnancy and newborn developed Jhpiego to ensure understanding of evidence-based MNCH care practices. The phone numbers of the pregnant women were gathered through the preexisting and functioning community volunteers, who reach the most vulnerable pregnant women in the project's targeted area. A total of 212 pregnant women have been reached by service providers for RPNC during the implementation period. The trained service providers offer quality antenatal and postnatal care, including newborn care, via telephone calls. It includes 24/7 incoming calls and time-allotted outgoing calls to the pregnant women during antenatal and postnatal periods, including the newborn care. The required data were collected daily in time with the calls, and the quality of the medical services is made assured with the track of the calls, ensuring data privacy and patient confidentiality. Lessons learned: The key lessons are 1) cost-effectiveness: RPNC service could reduce out of pocket expenditure of pregnant women as it only costs 1.6 United States dollars (USD) per one telehealth call while it costs 8 to 10 USD per one time in-person care service at private service providers, including transportation cost, 2) network of care: telehealth call could not replace the in-person antenatal and postnatal care services, and integration of telehealth calls with in-person care by local healthcare providers with the support of the community is crucial for accessibility to essential MNH services by poor and vulnerable women, and 3) sharing information on health access points: most of the women seem to have financial barriers in accessing private health facilities while public health system collapse and telehealthcare could provide information on low-cost facilities and connect women to relevant health facilities. These key lessons are important for future efforts regarding the implementation of remote pregnancy and newborn care in Myanmar, especially during the political crisis and COVID-19 pandemic situation.

Keywords: telehealth, accessibility, maternal care, newborn care

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Authors: K. Power, M. White, B. Dunleavey, E. Comerford, C. Doherty, N. Delanty, R. Corbridge, M. Fitzsimons

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Introduction: Providing people with access to their own healthcare information and engaging them as co-authors of their health record can promote better transparency, trust, and inclusivity in the healthcare system. With the advent of electronic health records, there is a move towards involving patients as partners in their healthcare by providing them with access to their own health data via electronic patient portals (ePortal). For example, a recently developed ePortal to the Irish National Epilepsy Electronic Patient Record (EPR) provides access to summary medical records, tools for Patient Reported Outcomes (PROM), health goal-setting and preparation for clinical appointments. Aim: To determine what people with epilepsy (their families/carers) value about the Irish epilepsy ePortal. Methods: A socio-technical process was employed recruiting 30 families of people with epilepsy who also have an intellectual disability (ID). Family members who are a care partner of the person with epilepsy (PWE) were invited to co-design, develop and implement the ePortal. Family members engaged in usability and utility testing which involved a face to face meeting to learn about the ePortal, register for a user account and evaluate its structure and content. Family members were instructed to login to the portal on at least two separate occasions following the meeting and to complete a self-report evaluation tool during this time. The evaluation tool, based on a Usability Questionnaire (Lewis, 1993), consists of a short assessment of comfort using technology, instructions for using the ePortal and some tasks to complete. Tasks included validating summary record details, assessing ePortal ease of use, evaluation of information presented. Participants were asked for suggestions on how to improve the portal and make it more applicable to PWE who also have an ID. Results: Family members responded positively to the ePortal and valued the ability to share information between clinicians and care partners; use the ePortal as a passport between different healthcare settings (e.g., primary care to hospital). In the context of elderly parents of PWE, the ePortal is valued as a tool for supporting shared care between family members. Participants welcomed the facility to log lists of questions and goals to discuss with the clinician at the next clinical appointment as a means of improving quality of care. Participants also suggested further enhancements to the ePortal such as access to clinic letters which can provide an aide memoir in terms of the careplan agreed with the clinical team. For example, through the ePortal, people could see what investigations or therapies are scheduled. Conclusion: The Epilepsy Patient Portal is accessible via a range of devices such as smartphones and tablets. ePortals have the potential to help personalise care, improve patient involvement in clinical decision making, engage them as quality and safety partners, and help clinicians be more responsive to patient needs. Acknowledgement: The epilepsy ePortal project is part of PISCES, a Lighthouse Project funded by eHealth Ireland and HSE to help build an understanding of the benefits of eHealth technologies in the Irish Healthcare System.

Keywords: electronic patient portal, electronic patient record, epilepsy, intellectual disability, usability testing

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