Search results for: home care

Authors: Maryam Risla Shahul Hameed, Tharsiga Yogarajah, Fritzy Mathew, Tayyaba Syed, Shalin Shaunak

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Aim: Auditing the adherence of Trauma and Orthopaedics Operative notes to the RCS Good Surgical Practice Guidelines. Method: Clinical audit conducted on 150 operative notes over a period of 2 months April- May 2023, including emergency and elective surgeries performed in Ashford and St. Peter’s Hospital. The RCS Good Practice Surgical Guidelines for an ideal operative note were used to compare.Results: Date of the procedure and signature of the surgeon were mentioned in all the notes by default in the electronic template being used. Title of the operation performed and whether elective or emergency were mentioned by 92% and 45%, respectively. Name of theatre anaesthetist and operating surgeons were mentioned by 73% and 93% respectively. Time of surgery mentioned by 26%. Operative findings and operative diagnosis mentioned by 83% and 53% respectively. Incision and complications of surgery mentioned in 80% and 53%, respectively. Details of tissue added/ altered/ removed mentioned by 46%. Information on prosthesis or implant used is mentioned by 54%. Details of closure and anticipated blood loss mentioned in 91% and 45% respectively. Antibiotic prophylaxis was mentioned by 63%, out of which only 23% mentioned the name and duration of the antibiotic. VTE prophylaxis was mentioned by 84%, out of which only 23% and 29% mentioned the name and duration of the prophylaxis, respectively. Conclusion: There is more for improvement in the operative notes for better continuity of care between the operating surgeons and other doctors in the wards taking care of the patients post operatively. We recommend to follow a standardized guidelines by all the nationwide and a standard template to be followed by all.

Keywords: surgery, notes, RCS, guidelines

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Authors: Amirreza Razzaghipour, Mahdi Khalili

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References from the World Health Organization and the Center for Disease Control for deceleration the spread of the Novel COVID-19, comprises social estrangement, frequent handwashing, and covering your mouth when around others. As hearing healthcare specialists, the influence of existenceinvoluntary to boundary social interactions on persons with hearing impairment was significant for us to understand. We found ourselves delaying cochlear implant (CI) surgeries. All children, and chiefly those with hearing loss, are susceptible to reductions in spoken communication. Hearing plans, such as cochlear implants, provide children with hearing loss access to spoken communication and provision language development. when provided early and used consistently, these supplies help children with hearing loss to engage in spoken connections. Cochlear implant (CI) is a standard medical-surgical treatment for bilateral severe to profound hearing loss with no advantage with the hearing aid. Hearing is one of the most important senses in humans. Pediatric hearing loss establishes one of the most important public health challenges. Children with hearing loss are recognized early and habilitated via hearing aids or with cochlear implants (CIs). Suitable care and maintenance as well as continuous auditory verbal therapy (AVT) are also essential in reaching for the successful attainment of language acquisition. Children with hearing loss posture important challenges to their parents, particularly when there is limited admission to their hearing care providers. The disruption in the routine of their hearing and therapy follow-up services has had substantial effects on the children as well as their parents.

Keywords: healthcare, covid-19, cochlear implants, spoken communication, hearing loss

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Authors: Mathilde Blondon, Salla Aicha Dieng, Catherine Pfister

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In a paradoxical way, teenagers nowadays seem to use suicidal attempts to elaborate on their trauma abuses and regain some kind of control in their lives. As their behavior becomes life-threatening, the hospital offers a variety of expertise to address their need, with Child Protective Services also joining in, to a point when teenagers could have a feeling of losing control of their lives, which results in them making more suicidal attempts. Our goal here is to walk with these foster teenagers long enough to step therapy up first, then as their mental health is restored enough to step the therapy down in a way that is secure and will give them their life back. This would prevent them from making suicidal attempts to get a feeling of control over their life. We’ll present a clinical case of a 14-year-old girl named Sofia, who was suffering from parental deprivation, an identity disorder, and severe depression disorder. Our intervention took place in January 2024, after Sofia had undergone four hospitalizations, including a two-month period in a specialized clinic. In a stepping-up effort, a substantial setting has been built around Sofia. She was coming three days a week to therapeutic activities at the Child Psychiatry Day Hospital, she had one psychotherapy session a week at the Medical-Psychological Center, and she was meeting with the Adolescent Psychiatrist on a regular basis. However, her suicidal attempts frequency continued to increase to the point when she couldn’t stay more than four days outside the hospital unit without harming herself and being brought back to the Emergency Unit. We were all stuck in some kind of medical deadlock, writing to clinics that had no room for her while social workers were calling foster homes that wouldn’t even accept her either. At some point, a clinical decision was made by the psychiatrist to stop what appeared to be a global movement of traumatic repetition, which involved Sofia’s family, the medical team and the social workers as one. This decision to step therapy down created a surprise and put an end to the cycle. It provided a new path, a new solution where Sofia could securely settle without being unfaithful to her family. Her suicidal attempts stopped for four weeks. She had one relapse, then didn’t make another attempt so far. There is a fine line between too little and too much, a pathway with the right amount of care and support. We believe it is not a steady line but rather a path up and down the hill. It’s about building up this moment when medication and mental processes have improved the subject’s condition enough to allow the medical team to step therapy down and give more control back to the subject. These needed variations used to come from a change of hospital or medical team. Stepped care avoids any breaking of bonds and appears to be decisive in stopping teenagers’ suicidal attempts.

Keywords: child protection, adolescent psychiatry, teenager suicidal attempt, foster teenagers, parental deprivation, stepped care

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Authors: Chuan-Ming Tung, Tzu-Chiao Yuan

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This research aims to construct the supply indicators and weights of shelter space from a perspective of the needs of the elderly by virtue of literature review, a systematical compilation of related regulations, and the use of the Analytical Hierarchy Process method, the questionnaires regarding the indicators filled out by 16 experts and scholars. The researcher then used 3 schools and 2 activity centers in Banqiao District, New Taipei City, as study cases to evaluate the ‘friendliness’ degree/level for the supply of shelters meeting the needs of elderly people. The supply evaluation indicators of friendly shelters meeting the needs of the elderly include "Administrative Operations and Service Needs" and "Residence-related and Living Needs"; under the "Administrative Operations and Service Needs" are "Management Operations and Information Provision", "Shelter Space Preparedness and Logistics Support", "Medical Care and Social Support", and "Shelters and Medical Environment", a total of 17 assessment items in four indicators, while under the "Residence-related and Living Needs" are "Dietary Needs", "Sleep Needs", "Hygiene and Sanitation Needs", "Accessibility and Convenience Needs ", etc., a total of 18 assessment items in four indicators. The results show that "Residence-related and Living Needs" is the most important item in the main levels of the supply indicators of the needs for friendly shelters to elderly people (weigh value 0.5504), followed by "Administrative Operations and Service Needs" (0.4496). The order of importance of the supply indicators of friendly shelters for the needs of elderly people is as follows: "Hygiene and Sanitation Needs" (0.1721), "Dietary Needs" (0.1340), "Medical Care and Social Support" (0.1300), "Sleep Needs" (0.1277), "Accessibility and Convenience Needs" (0.1166), "Basic Environment of Shelters" (0.1145), "Shelter Space Preparedness and Logistics Support" (0.1115) and "Management Operations and Information Provision" (0.0936). In addition, it can be noticed from the results of the case evaluation that the provision of refuges and shelters, mainly from schools and activity centers, is extremely inadequate for the needs of the elderly. In a set of comprehensive comparisons and contrasts, the evaluation indicators of refuges and shelters that need to be improved are "Medical Care and Social Support", "Hygiene and Sanitation Needs", "Sleep Needs", "Dietary Needs", and "Shelter Space Preparedness and Logistics Support".

Keywords: needs of the elderly people, urban shelters, evaluation indicators/indices., taiwan

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Authors: Michelle Jennett, Jana Dengler, Maytal Perlman

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Background: Cervical spinal cord injury (SCI) is a devastating event that results in upper limb paralysis, loss of independence, and disability. People living with cervical SCI have identified improvement of upper limb function as a top priority. Nerve and tendon transfer surgery has successfully restored upper limb function in cervical SCI but is not universally used or available to all eligible individuals. This exploratory mixed-methods study used an implementation science approach to better understand these factors that influence access to upper limb reconstruction in the Canadian context and design an intervention to increase access to care. Methods: Data from the Canadian Institute for Health Information’s Discharge Abstracts Database (CIHI-DAD) and the National Ambulatory Care Reporting System (NACRS) were used to determine the annual rate of nerve transfer and tendon transfer surgeries performed in cervical SCI in Canada over the last 15 years. Semi-structured interviews informed by the consolidated framework for implementation research (CFIR) were used to explore Ontario healthcare provider knowledge and practices around upper limb reconstruction. An inductive, iterative constant comparative process involving descriptive and interpretive analyses was used to identify themes that emerged from the data. Results: Healthcare providers (n = 10 upper extremity surgeons, n = 10 SCI physiatrists, n = 12 physical and occupational therapists working with individuals with SCI) were interviewed about their knowledge and perceptions of upper limb reconstruction and their current practices and discussions around upper limb reconstruction. Data analysis is currently underway and will be presented. Regional variation in rates of upper limb reconstruction and trends over time are also currently being analyzed. Conclusions: Utilization of nerve and tendon transfer surgery to improve upper limb reconstruction in Canada remains low. There are a complex array of interrelated individual-, provider- and system-level barriers that prevent individuals with cervical SCI from accessing upper limb reconstruction. In order to offer equitable access to care, a multi-modal approach addressing current barriers is required.

Keywords: cervical spinal cord injury, nerve and tendon transfer surgery, spinal cord injury, upper extremity reconstruction

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Authors: Michele L. Tilstra, Tiffany J. Peets

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Interprofessional collaboration in behavioral healthcare education is increasingly recognized for its value in training students to address diverse client needs. While interprofessional education (IPE) is well-documented in occupational therapy education to address physical health, limited research exists on collaboration with counselors to address mental health concerns and the psychosocial needs of individuals receiving care. Counseling education literature primarily examines the collaboration of counseling students with psychiatrists, psychologists, social workers, and marriage and family therapists. This pretest/posttest survey research study explored changes in attitudes toward interprofessional teams among 56 Master of Occupational Therapy (MOT) (n = 42) and Counseling and Human Development (CHD) (n = 14) students participating in the Counselors and Occupational Therapists Professionally Engaged in the Community (COPE) program. The COPE program was designed to strengthen the behavioral health workforce in high-need and high-demand areas. Students accepted into the COPE program were divided into small MOT/CHD groups to complete multiple interprofessional multicultural learning modules using videos, case studies, and online discussion board posts. The online modules encouraged reflection on various behavioral healthcare roles, benefits of team-based care, cultural humility, current mental health challenges, personal biases, power imbalances, and advocacy for underserved populations. Using the Student Perceptions of Interprofessional Clinical Education- Revision 2 (SPICE-R2) scale, students completed pretest and posttest surveys using a 5-point Likert scale (Strongly Agree = 5 to Strongly Disagree = 1) to evaluate their attitudes toward interprofessional teamwork and collaboration. The SPICE-R2 measured three different factors: interprofessional teamwork and team-based practice (Team), roles/responsibilities for collaborative practice (Roles), and patient outcomes from collaborative practice (Outcomes). The mean total scores for all students improved from 4.25 (pretest) to 4.43 (posttest), Team from 4.66 to 4.58, Roles from 3.88 to 4.30, and Outcomes from 4.08 to 4.36. A paired t-test analysis for the total mean scores resulted in a t-statistic of 2.54, which exceeded both one-tail and two-tail critical values, indicating statistical significance (p = .001). When the factors of the SPICE-R2 were analyzed separately, only the Roles (t Stat=4.08, p =.0001) and Outcomes (t Stat=3.13, p = .002) were statistically significant. The item ‘I understand the roles of other health professionals’ showed the most improvement from a mean score for all students of 3.76 (pretest) to 4.46 (posttest). The significant improvement in students' attitudes toward interprofessional teams suggests that the unique integration of OT and CHD students in the COPE program effectively develops a better understanding of the collaborative roles necessary for holistic client care. These results support the importance of IPE through structured, engaging interprofessional experiences. These experiences are essential for enhancing students' readiness for collaborative practice and align with accreditation standards requiring interprofessional education in OT and CHD programs to prepare practitioners for team-based care. The findings contribute to the growing body of evidence supporting the integration of IPE in behavioral healthcare curricula to improve holistic client care and encourage students to engage in collaborative practice across healthcare settings.

Keywords: behavioral healthcare, counseling education, interprofessional education, mental health education, occupational therapy education

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Authors: Emily Toon

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Nurses play a critical role in the prevention of ventilator-associated pneumonia through the maintenance of endotracheal tubes and use of subglottic secretion drainage via subglottic suctioning endotracheal tubes. The purpose of this evidence based practice project is to develop a staff education program on subglottic suctioning endotracheal tubes for critical care nurses at Middlesex Health with the aim of determining and documenting increased knowledge and/or practice change. The setting included registered nurses within Middlesex Health’s critical care unit who were recruited to complete a pre-test (n=14), view a presentation, and complete a post-test (n=10). Average pre-test scores were compared to average post-test scores to determine an increase in knowledge and/or practice change. The overall mean pre-test score was 59.7 percent, compared with the mean post-test score of 88.1 percent. Pre- and post-test scores were unmatched, so statistical significance could not be determined. The hypothesis that a staff education program on subglottic suctioning endotracheal tubes would demonstrate an increase in knowledge was supported, but not statistically. By integrating a pre-test/post-test design into educational presentations to evaluate increased knowledge, data generated may be used to improve methods and practices of delivering education and enhance staff learning.

Keywords: endotracheal tubes, staff education, subglottic secretion drainage, ventilator-associated pneumonia

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Authors: Cinthia G. P. Calou, Franz J. Antezana, Ana I. O. Nicolau, Eveliny S. Martins, Paula R. A. L. Soares, Glauberto S. Quirino, Dayanne R. Oliveira, Priscila S. Aquino, Régia C. M. B. Castro, Ana K. B. Pinheiro

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Introduction: As an integral part of the health-disease process, gestation is a period in which the social insertion of women can influence, in a positive or negative way, the course of the pregnancy-puerperal cycle. Thus, evaluating the quality of life of this population can redirect the implementation of innovative practices in the quest to make them more effective and real for the promotion of a more humanized care. This study explores the associations between the obstetric factors with affected areas of health-related quality of life of pregnant women with habitual risk. Methods: This is a cross-sectional, quantitative study conducted in three public facilities and a private service that provides prenatal care in the city of Fortaleza, Ceara, Brazil. The sample consisted of 261 pregnant women who underwent low-risk prenatal care and were interviewed from September to November 2014. The collection instruments were a questionnaire containing socio-demographic and obstetric variables, in addition to the Brazilian version of the Mother scale Generated Index (MGI) characterized by being a specific and objective instrument, consisting of a single sheet and subdivided into three stages. It allows identifying the areas of life of the pregnant woman that are most affected, which could go unnoticed by the pre-formulated measurement instruments. The obstetric data, as well as the data concerning the application of the MGI scale, were compiled and analyzed through the statistical program Statistical Package for the Social Sciences (SPSS), version 20.0. After the compilation, a descriptive analysis was carried out. Then, associations were made between some variables. The tests applied were the Pearson Chi-Square and the Fisher's exact test. The odds ratio was also calculated. These associations were considered statistically significant when the p (probability) value was less than or equal to a level of 5% (α = 0.05) in the tests performed. Results: The variables that negatively reflected the quality of life of the pregnant women and presented a significant association with the polaciuria were: gestational age (p = 0.022) and parity (p = 0.048). Episodes of nausea and vomiting also showed significant with gestational age correlation (p = 0.0001). Evaluating the crossing of stress, we observed a significant association with parity (p = 0.0001). In turn, emotional lability revealed dependence on the variable type of delivery (p = 0.009). Conclusion: The health professionals involved in the assistance to the pregnant woman can understand how the process of gestation is experienced, considering all its peculiar transformations; to meet their individual needs, stimulating their autonomy and their power of choice, envisaging the achievement of a better quality of life related to health in the perspective of health promotion.

Keywords: health-related quality of life, obstetric nursing, pregnant women, prenatal care

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Authors: Rhoda N. Kayongo

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As behavior analysts in education continue to debate on how higher institutions can continue to benefit from their social and academic related programs, higher education is facing challenges in the area of character development. This is manifested in the percentages of college completion rates, teen pregnancies, drug abuse, sexual abuse, suicide, plagiarism, lack of academic integrity, and violence among their students. Attending college is a perceived opportunity to positively influence the actions and behaviors of the next generation of society; thus colleges and universities have to provide opportunities to develop students’ values and behaviors. Prior studies were mainly conducted in private institutions and more so in developed countries. However, with the complexity of the nature of student body currently due to the changing world, a multidimensional approach combining multiple factors that enhance character development outcomes is needed to suit the changing trends. The main purpose of this study was to identify opportunities in colleges and develop a model for predicting character development outcomes. A survey questionnaire composed of 7 scales including in-classroom interaction, out-of-classroom interaction, school climate, personal lifestyle, home environment, and peer influence as independent variables and character development outcomes as the dependent variable was administered to a total of five hundred and one students of 3rd and 4th year level in selected public colleges and universities in the Philippines and Rwanda. Using structural equation modelling, a predictive model explained 57% of the variance in character development outcomes. Findings from the results of the analysis showed that in-classroom interactions have a substantial direct influence on character development outcomes of the students (r = .75, p < .05). In addition, out-of-classroom interaction, school climate, and home environment contributed to students’ character development outcomes but in an indirect way. The study concluded that in the classroom are many opportunities for teachers to teach, model and integrate character development among their students. Thus, suggestions are made to public colleges and universities to deliberately boost and implement experiences that cultivate character within the classroom. These may contribute tremendously to the students' character development outcomes and hence render effective models of behaviour analysis in higher education.

Keywords: character development, tertiary institutions, predictive model, behavior analysis

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Authors: U. K. Tamuli

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Introduction: North East India is graced with natural beauty and hazards. This area is prone to major earthquakes, floods, landslides, accidents, terrorist activities etc. Academy of Trauma (AOT), an NGO of Doctors, conducts training programs, mock drills, field trials amongst the doctors and paramedics in North East India. The present study is to evaluate the efficacy of such training in terms of sensitivity, awareness, and delivery systems of the products. Here the health care delivery system for disaster management is inadequate. Clear guideline of mass casualty management is unavailable. AOT has initiated steps to increase the awareness and handling of mass casualty management to improve the emergency health care delivery system. Method: AOT has conducted training programmes on emergency health management, mass casualty management and hospital preparedness amongst 800 doctors and 1200 paramedics in twenty-two districts of Assam in Northeast India. The training module consists of lectures, hands-on workshop using manikins, mock drills, distribution of manuals, emergency management exercises, periodic exchange of experience and debriefings. AOT evaluates the impact of these trainings by conducting pre and post tests of delegates, trainer’s evaluation, delegate’s satisfaction and confidence level and their suggestions. Results: The module, training, hands-on workshops, mock drills were highly appreciated. There is significant improvement in scores on the post-training tests. The confidence level of the participants has risen to deal with emergency medical situation Conclusion: These kinds of trainings increase the awareness of the medical members to handle mass casualties in different situations. One such training actually sensitises the delegates. Repetition of such training, TOT (Training-of-Trainers) programs, and individual efforts of delegates are extremely important for sustenance and success of health care delivery service during disasters in the developing countries. Further collaboration, assistance, networking, suggestions from established global agencies in this field will be highly appreciated.

Keywords: capacity building, North East India, non-governmental organization, trauma

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Authors: Rubina Jahan, Mohammad Zayeed Bin Alam, Sazzad Chowdhury, Sadia Chowdhury

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Access to mental health services in Bangladesh is a tale of urban privilege and rural struggle. Mental health services in the country are primarily centered in urban medical hospitals, with only 260 psychiatrists for a population of more than 162 million, while rural populations face far more severe and daunting challenges. In alignment with the World Health Organization's perspective on mental health as a basic human right and a crucial component for personal, community, and socioeconomic development; SAJIDA Foundation a value driven non-government organization in Bangladesh has introduced a Community Based Mental Health (CMHI) program to fill critical gaps in mental health care, providing accessible and affordable community-based services to protect and promote mental health, offering support for those grappling with mental health conditions. The CMHI programme is being implemented in 3 districts in Bangladesh, 2 of them are remote and most climate vulnerable areas targeting total 6,797 individual. The intervention plan involves a screening of all participants using a 10-point vulnerability assessment tool to identify vulnerable individuals. The assumption underlying this is that individuals assessed as vulnerable is primarily due to biological, psychological, social and economic factors and they are at an increased risk of developing common mental health issues. Those identified as vulnerable with high risk and emergency conditions will receive Mental Health First Aid (MHFA) and undergo further screening with GHQ-12 to be identified as cases and non-cases. The identified cases are then referred to community lay counsellors with basic training and knowledge in providing 4-6 sessions on problem solving or behavior activation. In situations where no improvement occurs post lay counselling or for individuals with severe mental health conditions, a referral process will be initiated, directing individuals to ensure appropriate mental health care. In our presentation, it will present the findings from 6-month pilot implementation focusing on the community-based screening versus outcome of the lay counseling session and barriers and facilitators of implementing community based mental health care in a resource constraint country like Bangladesh.

Keywords: community-based mental health, lay counseling, rural bangladesh, treatment gap

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Authors: Farzana Esmailkassam, Usakorn Kunanuvat, Zahraa Mohammed Ali

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Objective: The key barrier in Clozapine treatment of treatment-resistant schizophrenia (TRS) includes frequent bloods draws to monitor neutropenia, the main drug side effect. WBC and ANC monitoring must occur throughout treatment. Accurate WBC and ANC counts are necessary for clinical decisions to halt, modify or continue clozapine treatment. The CSAN Pronto point-of-care (POC) analyzer generates white blood cells (WBC) and absolute neutrophils (ANC) through image analysis of capillary blood. POC monitoring offers significant advantages over central laboratory testing. This study evaluated the performance of the CSAN Pronto against the Beckman DxH900 Hematology laboratory analyzer. Methods: Forty venous samples (EDTA whole blood) with varying concentrations of WBC and ANC as established on the DxH900 analyzer were tested in duplicates on three CSAN Pronto analyzers. Additionally, both venous and capillary samples were concomitantly collected from 20 volunteers and assessed on the CSAN Pronto and the DxH900 analyzer. The analytical performance including precision using liquid quality controls (QCs) as well as patient samples near the medical decision points, and linearity using a mix of high and low patient samples to create five concentrations was also evaluated. Results: In the precision study for QCs and whole blood, WBC and ANC showed CV inside the limits established according to manufacturer and laboratory acceptability standards. WBC and ANC were found to be linear across the measurement range with a correlation of 0.99. WBC and ANC from all analyzers correlated well in venous samples on the DxH900 across the tested sample ranges with a correlation of > 0.95. Mean bias in ANC obtained on the CSAN pronto versus the DxH900 was 0.07× 109 cells/L (95% L.O.A -0.25 to 0.49) for concentrations <4.0 × 109 cells/L, which includes decision-making cut-offs for continuing clozapine treatment. Mean bias in WBC obtained on the CSAN pronto versus the DxH900 was 0.34× 109 cells/L (95% L.O.A -0.13 to 0.72) for concentrations <5.0 × 109 cells/L. The mean bias was higher (-11% for ANC, 5% for WBC) at higher concentrations. The correlations between capillary and venous samples showed more variability with mean bias of 0.20 × 109 cells/L for the ANC. Conclusions: The CSAN pronto showed acceptable performance in WBC and ANC measurements from venous and capillary samples and was approved for clinical use. This testing will facilitate treatment decisions and improve clozapine uptake and compliance.

Keywords: absolute neutrophil counts, clozapine, point of care, white blood cells

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Authors: Priya Sarah Vijoy

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The aim of this study is to analyze the Portrayal of women in Television Advertisements. This research study is conducted to analyze how women are portrayed in Television Advertisements. Advertising dates back to several hundreds of years. Right from the beginning, the seller wanted his goods to be sold and he used various techniques for achieving his objective. Advertisements have consistently confined women to traditional mother, home, or beauty/sex-oriented roles that are not representative of women’s diversity. Currently, in our society the television stereotyping of woman is the dominating forces in the media that degrade women and limit their representation. Thus the study analyzes how women are portrayed in Television advertisements and find whether roles of women in Television Advertisement are related to the product or not.

Keywords: advertising, stereotyping, television, women

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Authors: Sedigheh Salemi, Mahnaz Sanjari, Maryam Aalaa, Mohammad Mirzabeigi

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Clinical governance is the framework within which the health service provider is required to ongoing accountability and improvement of the quality of their services. This cross-sectional study was conducted in 661 nurses who work in government hospitals from 35 hospitals of 9 provinces in Iran. The study was approved by the Nursing Council and was carried out with the authorization of the Research Ethics Committee. The questionnaire included 24 questions in which 4 questions focused on clinical governance defining from the nurses' perspective. The reliability was evaluated by Cronbach's alpha (α=0/83). Statistical analyzes were performed, using SPSS version 16. Approximately 40% of nurses correctly answered that clinical governance is not "system of punishment and rewards for the staff". The most nurses believed that "clinical efficacy" is one of the main components of clinical governance. A few of nurses correctly responded that "Evidence Based Practice" and "management" is not part of clinical governance. The small number of nurses correctly answered that the "maintenance of patient records" and "to recognize the adverse effects" is not the role of nurse in clinical governance. Most "do not know" answer was to the "maintenance of patient records". The most nurses unanimously believed that the implementation of clinical governance led to "promoting the quality of care". About a third of nurses correctly stated that the implementation of clinical governance will not lead to "an increase in salaries and benefits of the medical team". As a member of the health team, nurses are responsible in terms of participation in quality improvement and it is necessary to create an environment in which clinical care will flourish and serve to preserve the high standards.

Keywords: clinical governance, nurses, salary, health team

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Authors: Marcin Kowalski, Tomasz Wiktor, Piotr Ladonski, Krzysztof Bortnowski, Szymon Przybyl, Mateusz Grzesiak

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This paper provides a detailed overview of the so-called smart grid or vehicle-to-grid idea, including a description of our way of implementation. The primary targets of this paper are technical students, young constructors, visionaries, however more experienced designers may find useful ideas for developing their vehicles. The publication will also be useful for home-grown builders who want to save on electricity. This article as well summarizes the advantages and disadvantages of V2G solution and might be helpful for students teams planning to participate in Bridgestone World Solar Challenge.

Keywords: solar powered vehicle, vehicle to grid, electric car, v2g, bridgestone world solar challenge

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Authors: M. S. Sarkar, J. A. Johnson, S. Sen, G. K. Saha, K. Ramesh

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There is growing recognition of several important roles played by tigers for maintaining sustainable biodiversity at diverse ecosystems in South and South-East Asia. Only <3200 individuals are left in the wild because of poaching and habitat loss. Thus, restoring wild population is an emerging as well as important conservation initiative, but such efforts still remain challenging due to their elusive and solitary behavior. After careful translocation of few individuals, how reintroduced individuals colonize into suitable habitat and achieve stable stage population through reproduction is vital information for forest managers and policy makers of its 13 distribution range countries. Four wild and two captive radio collared tigers were reintroduced at Panna Tiger Reserve, Madhya-pradesh, India during 2009-2014. We critically examined their settlement behavior and population growth over the period. Results from long term telemetry data showed that male explored larger areas rapidly in short time span, while females explored small area in long time period and with significant high rate of movement in both sexes during exploratory period. Significant difference in home range sizes of tigers were observed in exploratory and settlement period. Though all reintroduced tigers preferred densely vegetated undisturbed forest patches within the core area of tiger reserve, a niche based k select analysis showed that individual variation in habitat selection was prominent among reintroduced tigers. Total 18 litter of >42 known cubs were born with low mortality rate, high maternity rate, high observed growth rate and short generation time in both the sexes. The population achieved its carrying capacity in a very short time span, marking success of this current tiger conservation programme. Our study information could provide significant insights on the tiger biology of translocated tigers with implication for future conservation strategies that consider translocation based recovery in their range countries.

Keywords: reintroduction, tiger, home range, demography

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Authors: Mohammad Tayefeh Norooz, Amirhossein Kargarzadeh

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Overweight and obesity as an abnormality are health threatening factors. Body mass index (BMI) above 25 is referred to as overweight and above 30 as obese. Apollo Endosurgery, Inc., a pioneering company in endoscopy surgeries, is poised to revolutionize patient care with its minimally invasive treatment options. Some product solutions are designed to improve patient outcomes and redefine the future of healthcare. Weight gain post-weight-loss surgery may stem from an enlarged stomach opening, reducing fullness and increasing food intake. Apollo Endosurgery's OverStitch system, a minimally invasive approach, addresses this by using sutures to reduce stomach opening size. This reflects Apollo's commitment to transformative improvements in healing endoscopy, emphasizing a shift towards minimally invasive options. The system's versatility and precision in full-thickness suturing offer treatment alternatives, exemplified in applications like Endoscopic Sleeve Gastroplasty for reshaping obesity management. Apollo’s dedication to pioneering advancements suggests ongoing breakthroughs in minimally invasive surgery, positioning the OverStitch systems as a testament to innovation in patient care.

Keywords: apollo endosurgery, endoscopic sleeve gastroplasty, weight loss system, overstitch endoscopic suturing system, therapeutic, perforations, fistula

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Authors: Karnsunaphat Balthip, Bunrome Suwanphahu

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Purpose in life is one attribute of the concept of spirituality which is used in health promotion to promote holistic wellbeing. Purpose is a significant foundation of motivation and achievement that guides adolescents down positive life paths. Adolescents who have life purpose are more likely to achieve greater success and wellbeing in their lives. The current study used qualitative research methodology to describe the experiences that enhanced the purpose in life of 27 Thai adolescents from different backgrounds, living in urban areas in southern Thailand. Data were gathered through in-depth interviews and observation. Thematic analysis methods guided data analysis. The results showed that love and connectedness are important in enhancing purpose in life. They illustrate four attributes of love and connection reflecting the four attributes of gratitude that enhance purpose in life: (1) self-love, or gratitude to oneself, whereby participants endeavor to live life in a positive way by taking care of themselves based on moral and ethical values; (2) connectedness or gratitude to parents or significant others, whereby participants are committed to taking holistic care (physical, psychological, and spiritual) of their significant others; (3) connectedness or gratitude to peers, whereby participants support their peers to help them live their own lives in a positive way; and (4) connectedness or gratitude to the wider world (environment, society, nation and beyond), through a sense of altruism towards others. The findings provide helpful insights for parents, nurses, and other health professionals supporting adolescents to obtain a purpose in life.

Keywords: adolescent, gratitude, purpose in life, spirituality

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Authors: A. Dean, M. Pitcher, L. Storer, K. Shanahan, I. Rio, B. Mann

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Purpose: Breast cancer survivors are at risk of specific physical and psycho-social issues, such as arm swelling, fatigue, and depression. Firstly, we investigate symptoms reported by Australia breast cancer survivors upon completion of definitive treatment. Secondly, we evaluate the appropriateness and effectiveness of a multi-centre pilot program nurse-led clinic to identify these issues and make timely referrals to available services. Methods: Patients post-definitive treatment (excluding ongoing hormonal therapy) for early breast cancer or ductal carcinoma in situ were invited to participate. An hour long appointment with a breast care nurse (BCN) was scheduled. In preparation, patients completed validated quality-of-life surveys (FACT-B, Menopause Rating Scale, Distress Thermometer). During the appointment, issues identified in the surveys were addressed and referrals to appropriate services arranged. Results: 183 of 274 (67%) eligible patients attended a nurse-led clinic. Mean age 56.8 years (range 29-87 years), 181/183 women, 105/183 post-menopausal. 96 (55%) participants reported significant level of distress; 31 (18%) participants reported extreme distress or depression. Distress stemmed from a lack of energy (56/175); poor quality of sleep (50/176); inability to work or participate in household activities (35/172) and problems with sex life (28/89). 166 referrals were offered; 94% of patients accepted the referrals. 65% responded to a follow-up survey: the majority of women either strongly agreed or agreed that the BCN was overwhelmingly supportive, helpful in making referrals, and compassionate towards them. 39% reported making lifestyle changes as a result of the BCN. Conclusion: Breast cancer survivors experience a unique set of challenges, including low mood, difficulty sleeping, problems with sex life and fear of disease recurrence. The nurse-led clinic model is an appropriate and effective method to ensure physical and psycho-social issues are identified and managed in a timely manner. This model empowers breast cancer survivors with information about their diagnosis and available services.

Keywords: early breast cancer, survivorship, breast care nursing, oncology nursing and cancer care

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Authors: Onur Elma, Giray E. Kıral, Ugur S. Selamoğuları, Mehmet Uzunoğlu, Bulent Vural

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Electrical energy has become indispensable for people's lives and with rapidly developing technology and continuously changing living standards the need for the electrical energy has been on the rise. Therefore, both energy generation and efficient use of energy are very important topics. Smart grid concept has been introduced to provide monitoring, energy efficiency, reliability and energy quality. Under smart grid concept, smart homes, which can be considered as key component in smart grid operation, have appeared as another research area. In this study, first, smart grid research in the world will be reviewed. Then, overview of smart grid applications in Turkey will be given.

Keywords: energy efficiency, smart grids, smart home, applications

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Authors: B. Nair, S. Singh

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Oral health behaviors such as dietary preferences and tooth brushing are acquired during a child’s primary socialization period yet many oral health promotion interventions are implemented without taking into account the role and impact of parental influence in supporting healthy oral health behaviors. The aim and objective of this study was to determine the relationship between parental income and level of education with knowledge, attitudes and perceptions of oral health care practices. Methods: The study design was cross-sectional and exploratory, and data collection occurred in two phases. Phase 1 comprised of a self-administered questionnaire. The sample consisted of parents of 313 Grade 1 learners aged between 5-6 years old attending one of twelve selected public primary schools in the Chatsworth Circuit, Durban, South Africa. Phase 2 comprised of focus group discussions held at 5 purposively selected schools. Data collection comprised of a semi-structured face-to-face group interview with the objective of obtaining a deeper understanding of parental knowledge, attitudes and perceptions of dental caries. Results and Discussion: Almost 56% of participants earned a monthly income of less than R6000 (600 US dollars). Nearly three quarters (77.5%) of participants indicated that they did not have medical aid/insurance scheme. More than three-quarters of the participants (76.6%) identified diet as being the primary cause of decayed teeth. More than half of the study sample (56.1%) indicated that milk teeth were important and that rotten teeth (74.6%) could affect the child’s health. Almost half (49.8%) of participants reported that “bad teeth” were inherited. With more than two-thirds of the participants (77.7%), having at most a high school education, there was a correlation between the level of the caregiver’s education and the oral health care of the child. The analysis of the correlation between a child having decayed teeth and income (p=.007); and the manner in which the income is received (p=.003) was statistically significant. The results indicate that more effort needs to be placed in understanding parental knowledge, perceptions and attitudes towards dental caries. Parental level of education, income and oral health literacy is shown to be related to attitudes, and perceptions towards dental caries and its subsequent preventive measures. These findings have important implications for oral health planning at community and facility-based levels.

Keywords: oral health prevention, parental education, dental caries, attitudes and perceptions

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Authors: Wanwadee Neamsakul

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VARK learning style is an effective method of learning that could enhance all skills of the students like visual (V), auditory (A), read/write (R), and kinesthetic (K). This learning style benefits the students in terms of professional competencies, critical thinking and lifelong learning which are the desirable characteristics of the nursing students. This study aimed to develop a model of teaching and learning clinical practicum at postpartum ward for nursing students by using VARK learning styles, and evaluate the nursing students’ opinions about the developmental model. A methodology used for this study was research and development (R&D). The model was developed by focus group discussion with five obstetric nursing instructors who have experiences teaching Maternal Newborn and Midwifery I subject. The activities related to practices in the postpartum (PP) ward including all skills of VARK were assigned into the matrix table. The researcher asked the experts to supervise the model and adjusted the model following the supervision. Subsequently, it was brought to be tried out with the nursing students who practiced on the PP ward. Thirty third year nursing students from one of the northern Nursing Colleges, Academic year 2015 were purposive sampling. The opinions about the satisfaction of the model were collected using a questionnaire which was tested for its validity and reliability. Data were analyzed using descriptive statistics. The developed model composed of 27 activities. Seven activities were developed as enhancement of visual skills for the nursing students (25.93%), five activities as auditory skills (18.52%), six activities as read and write skills (22.22%), and nine activities as kinesthetic skills (33.33%). Overall opinions about the model were reported at the highest level of average satisfaction (mean=4.63, S.D=0.45). In the aspects of visual skill (mean=4.80, S.D=0.45) was reported at the highest level of average satisfaction followed by auditory skill (mean=4.62, S.D=0.43), read and write skill (mean=4.57, S.D=0.46), and kinesthetic skill (mean=4.53, S.D=0.45) which were reported at the highest level of average satisfaction, respectively. The nursing students reported that the model could help them employ all of their skills during practicing and taking care of the postpartum women and newborn babies. They could establish self-confidence while providing care and felt proud of themselves by the benefits of the model. It can be said that using VARK learning style to develop the model could enhance both nursing students’ competencies and positive attitude towards the nursing profession. Consequently, they could provide quality care for postpartum women and newborn babies effectively in the long run.

Keywords: model, nursing students, postpartum ward, teaching and learning clinical practicum

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Authors: Valentina Marutyan

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Healthcare data mining is a rapidly developing field at the intersection of technology and medicine that has the potential to change our understanding and approach to providing healthcare. Healthcare and data mining is the process of examining huge amounts of data to extract useful information that can be applied in order to improve patient care, treatment effectiveness, and overall healthcare delivery. This field looks for patterns, trends, and correlations in a variety of healthcare datasets, such as electronic health records (EHRs), medical imaging, patient demographics, and treatment histories. To accomplish this, it uses advanced analytical approaches. Predictive analysis using historical patient data is a major area of interest in healthcare data mining. This enables doctors to get involved early to prevent problems or improve results for patients. It also assists in early disease detection and customized treatment planning for every person. Doctors can customize a patient's care by looking at their medical history, genetic profile, current and previous therapies. In this way, treatments can be more effective and have fewer negative consequences. Moreover, helping patients, it improves the efficiency of hospitals. It helps them determine the number of beds or doctors they require in regard to the number of patients they expect. In this project are used models like logistic regression, random forests, and neural networks for predicting diseases and analyzing medical images. Patients were helped by algorithms such as k-means, and connections between treatments and patient responses were identified by association rule mining. Time series techniques helped in resource management by predicting patient admissions. These methods improved healthcare decision-making and personalized treatment. Also, healthcare data mining must deal with difficulties such as bad data quality, privacy challenges, managing large and complicated datasets, ensuring the reliability of models, managing biases, limited data sharing, and regulatory compliance. Finally, secret code of data mining in healthcare helps medical professionals and hospitals make better decisions, treat patients more efficiently, and work more efficiently. It ultimately comes down to using data to improve treatment, make better choices, and simplify hospital operations for all patients.

Keywords: data mining, healthcare, big data, large amounts of data

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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: Carlos Tadeu Santana Tatum, Suzana Leitão Russo

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This paper aims to show comparative studies of different types of innovation applied to lighting, along with a theoretical review by means of a bibliographic method. We demonstrate that it is possible to understand the impacts of industries with a conventional innovation that uses natural resources to manufacture lights, and the opposite, when a frugal innovation solves the problems of a society at the bottom of the pyramid, helping people without access to electricity to get home lighting. The frugal innovation is simply the use of recycled PET bottles. We achieved the objective of our study by gathering data from environment, electrical engineering, international rules, and innovation, which gave us the best results. With all these variables, we can characterize this work as an interdisciplinary study.

Keywords: frugal, innovation, PET bottle, light

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Authors: Chamaraja Parulli

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Family is an important social institution devoted to the growth of a child, and parents are the important agents of socialization. Mentally challenged children are those who are affected by intellectual disability, which is manifested by limitation in intellectual functioning and adoptive behavior. Intellectual disability affects about 3-4 percentage of the general population. Intellectual disability is caused by genetic condition, problems during pregnancy, problems during childbirth, or illness. Mental retardation is the world’s most complex and challenging issue. The stigmatization of disability results in social and economic marginalization. Parents of the mentally challenged children will have a very high level of parenting stress, which is significantly more than the stress perceived by the parents of the children without disability. The prevalence of severe mental disorder called Schizophrenia is among 1.1 percent of the total population in India. On the other hand, 11 to 12 percent is the overall lifetime occurrence rate of mental disorders. While the government has a separate program for mental health, the segment is marred by lack of adequate doctors and infrastructure. Mentally retarded children have certain limitations in mental functioning and skills, which makes them slow learners in speaking, walking, and taking care of their personal needs such as dressing and eating. Accepting a child with mental handicap becomes difficult for parents and to the whole family, as they have to face many problems, including those of management, finance, deprivation of rest, and leisure. Also, the problems faced by the parents can be seen in different areas like – educational, psychological, social, emotional, financial and family related issues. The study brought out various difficulties and problems faced by the parents as well as family members. The findings revealed that the mental retardation is not only a medico-psychological problem but also a socio-cultural problem. The study results, however, indicate that the quality of life of the family having children with mental retardation can be improved to a greater extent by building up a child-friendly ambience at home. The main aim of the present study is to assess the problems faced by the parents of mentally challenged children, with the help of personal interview data collected from the parents of mentally challenged children, residing in Shimoga District of Karnataka State, India. These individuals were selected using stratified random sampling method. Organizing effective intervention programs for parents, family, society, and educational institutions towards reduction of family stress, augmenting the family’s strengths, increasing child’s competence and enhancing the positive attitudes and values of the society will go a long way for the peaceful existence of the mentally challenged children.

Keywords: mentally challenged children, intellectual disability, special children, social infrastructure, differently abled, psychological stress, marginalization

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Authors: Shweh Fern Loo, Jun Yin Ong, Than Zaw Oo

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Acute respiratory distress syndrome (ARDS) is a common serious condition of bilateral lung infiltrates that develops secondary to various underlying conditions such as diseases or injuries. ARDS with severe hypercapnia is associated with higher ICU mortality and morbidity. Venovenous Extracorporeal membrane oxygenation (VV-ECMO) support has been established to avert life-threatening hypoxemia and hypercapnic respiratory failure despite optimal conventional mechanical ventilation. However, VV-ECMO is relatively not advisable in particular groups of patients, especially in multi-organ failure, advanced age, hemorrhagic complications and irreversible central nervous system pathology. We presented a case of a 79-year-old Chinese lady without any pre-existing lung disease admitted to our hospital intensive care unit (ICU) after acute presentation of breathlessness and chest pain. After extensive workup, she was diagnosed with rapidly progressing acute interstitial pneumonia with ARDS and hypercapnia respiratory failure. The patient received lung protective strategies of mechanical ventilation and neuromuscular blockage therapy as per clinical guidelines. However, hypercapnia respiratory failure was refractory, and she was deemed not a good candidate for VV-ECMO support given her advanced age and high vasopressor requirements from shock. Alternative therapy with extracorporeal CO2 removal (ECCO2R) was considered and implemented. The patient received 12 days of ECCO2R paired with muscle paralysis, optimization of lung-protective mechanical ventilation and dialysis. Unfortunately, the patient still had refractory hypercapnic respiratory failure with dual vasopressor support despite prolonged therapy. Given failed and futile medical treatment, the family opted for withdrawal of care, a conservative approach, and comfort care, which led to her demise. The effectivity of extracorporeal CO2 removal may depend on disease burden, involvement and severity of the disease. There is insufficient data to make strong recommendations about its benefit-risk ratio for ECCO2R devices, and further studies and data would be required. Nonetheless, ECCO2R can be considered an alternative treatment for refractory hypercapnic respiratory failure patients who are unsuitable for initiating venovenous ECMO.

Keywords: extracorporeal CO2 removal (ECCO2R), acute respiratory distress syndrome (ARDS), acute interstitial pneumonia (AIP), hypercapnic respiratory failure

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Authors: Tanja Salary

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This paper discusses a study conducted in a juvenile justice facility regarding medication errors. It includes an introduction to data collected about medication errors in a juvenile justice facility from 2011 - 2019 and explores contributing factors that relate to those errors. The data was obtained from electronic incident records of medication errors that were documented from the years 2011 through 2019. In addition, the presentation reviews both current and historical research of empirical data about patient safety standards and quality care comparing traditional health care facilities to juvenile justice residential facilities and acknowledges a gap in research. The theoretical/conceptual framework for the research study was Bandura and Adams’s self-efficacy theory of behavioral change and Mark Friedman’s results-based accountability theory. Despite the lack of evidence in previous studies addressing medication errors in juvenile justice facilities, this presenter will share information that adds to the body of knowledge, including the potential relationship of medication errors and contributing factors of race and age. Implications for future research include the effect that education and training will have on the communication among juvenile justice staff, including nurses, who administer medications to juveniles to ensure adherence to patient safety standards. There are several opportunities for future research concerning other characteristics about factors that may affect medication administration errors within the residential juvenile justice facility.

Keywords: Juvenile justice, medication errors, juveniles, error reduction strategies

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Authors: Reuben Mugisha, Stella Bakibinga

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The cervical cancer burden is a global threat, but more so in low income settings where more than 85% of mortality cases occur due to lack of sufficient screening programs. There is consequently a lack of early detection of cancer and precancerous cells among women. Studies show that 3% to 35% of deaths could have been avoided through early screening depending on prognosis, disease progression, environmental and lifestyle factors. In this study, a systematic literature review is undertaken to understand potential barriers and facilitators as documented in previous studies that focus on the application of telehealth in cervical cancer screening programs for early detection of cancer and precancerous cells. The study informs future studies especially those from low income settings about lessons learned from previous studies and how to be best prepared while planning to implement telehealth for cervical cancer screening. It further identifies the knowledge gaps in the research area and makes recommendations. Using a specified selection criterion, 15 different articles are analyzed based on the study’s aim, theory or conceptual framework used, method applied, study findings and conclusion. Results are then tabulated and presented thematically to better inform readers about emerging facts on barriers and facilitators to telehealth implementation as documented in the reviewed articles, and how they consequently lead to evidence informed conclusions that are relevant to telehealth implementation for cervical cancer screening. Preliminary findings of this study underscore that use of low cost mobile colposcope is an appealing option in cervical cancer screening, particularly when coupled with onsite treatment of suspicious lesions. These tools relay cervical images to the online databases for storage and retrieval, they permit integration of connected devices at the point of care to rapidly collect clinical data for further analysis of the prevalence of cervical dysplasia and cervical cancer. Results however reveal the need for population sensitization prior to use of mobile colposcopies among patients, standardization of mobile colposcopy programs across screening partners, sufficient logistics and good connectivity, experienced experts to review image cases at the point-of-care as important facilitators to the implementation of mobile colposcope as a telehealth cervical cancer screening mechanism.

Keywords: cervical cancer screening, digital technology, hand-held colposcopy, knowledge-sharing

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Authors: M. Siedlikowski, F. Rauch, A. Tsimicalis

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Osteogenesis Imperfecta (OI) is a genetic disorder of childhood onset that causes frequent fractures after minimal physical stress. To date, OI research has focused on medically- and surgically-oriented outcomes with little attention on the perspective of the affected child. It is a challenge to elicit the child’s voice in health care, in other words, their own perspective on their symptoms, but software development offers a way forward. Sisom (Norwegian acronym derived from ‘Si det som det er’ meaning ‘Tell it as it is’) is an award-winning, rigorously tested, interactive, computerized tool that helps children with chronic illnesses express their symptoms to their clinicians. The successful Sisom software tool, that addresses the child directly, has not yet been adapted to attend to symptoms unique to children with OI. The purpose of this study was to develop a Sisom paper prototype for children with OI by seeking the perspectives of end users, particularly, children with OI and clinicians. Our descriptive qualitative study was conducted at Shriners Hospitals for Children® – Canada, which follows the largest cohort of children with OI in North America. Purposive sampling was used to recruit 12 children with OI over three cycles. Nine clinicians oversaw the development process, which involved determining the relevance of current Sisom symptoms, vignettes, and avatars, as well as generating new Sisom OI components. Data, including field notes, transcribed audio-recordings, and drawings, were deductively analyzed using content analysis techniques. Guided by the following framework, data pertaining to symptoms, vignettes, and avatars were coded into five categories: a) Relevant; b) Irrelevant; c) To modify; d) To add; e) Unsure. Overall, 70.8% of Sisom symptoms were deemed relevant for inclusion, with 49.4% directly incorporated, and 21.3% incorporated with changes to syntax, and/or vignette, and/or location. Three additions were made to the ‘Avatar’ island. This allowed children to celebrate their uniqueness: ‘Makes you feel like you’re not like everybody else.’ One new island, ‘About Me’, was added to capture children’s worldviews. One new sub-island, ‘Getting Around’, was added to reflect accessibility issues. These issues were related to the children’s independence, their social lives, as well as the perceptions of others. In being consulted as experts throughout the co-creation of the Sisom OI paper prototype, children coded the Sisom symptoms and provided sound rationales for their chosen codes. In rationalizing their codes, all children shared personal stories about themselves and their relationships, insights about their OI, and an understanding of the strengths and challenges they experience on a day-to-day basis. The child’s perspective on their health is a basic right, and allowing it to be heard is the next frontier in the care of children with genetic diseases. Sisom OI, a methodological breakthrough within OI research, will offer clinicians an innovative and child-centered approach to capture this neglected perspective. It will provide a tool for the delivery of health care in the center that established the worldwide standard of care for children with OI.

Keywords: child health, interactive computerized communication tool, participatory approach, symptom management

Procedia PDF Downloads 151