Search results for: autism care management

Authors: Hui Fang Huang Su, Jia Borror

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This study compared two interventions for teaching math to preschool-aged students with autism spectrum disorder (ASD). The first is considered the business as usual (BAU) intervention, which uses the Strategies for Teaching Based on Autism Research (STAR) curriculum and discrete trial teaching as the instructional methodology. The second is the Math is Not Difficult (Project MIND) activity-embedded, naturalistic intervention. These interventions were randomly assigned to four preschool students with ASD classrooms and implemented over three months for Project Mind. We used measurement gained during the same three months for the STAR intervention. In addition, we used A quasi-experimental, pre-test/post-test design to compare the effectiveness of these two interventions in building mathematical knowledge and skills. The pre-post measures include three standardized instruments: the Test of Early Math Ability-3, the Problem Solving and Calculation subtests of the Woodcock-Johnson Test of Achievement IV, and the Bracken Test of Basic Concepts-3 Receptive. The STAR curriculum-based assessment is administered to all Baudhuin students three times per year, and we used the results in this study. We anticipated that implementing these two approaches would improve the mathematical knowledge and skills of children with ASD. Still, it is crucial to see whether a behavioral or naturalistic teaching approach leads to more significant results.

Keywords: early learning, autism, math for pre-schoolers, special education, teaching strategies

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Authors: Herlin Vallejo, Jhon Osorio

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Quality is a concept that has gained importance in different scenarios over time, especially in the area of health. The nursing staff is one of the actors that contributes most to the care process and the satisfaction of the users in the evaluation of quality. However, until now, there are few tools to measure the quality of care in specialized performance scenarios. Patients receiving ambulatory cancer treatments can face various problems, which can increase their level of distress, so improving the quality of outpatient care for cancer patients should be a priority for oncology nursing. The experience of the patient in relation to the care in these services has been little investigated. The purpose of this study was to understand the perception that patients have about quality care in outpatient chemotherapy services. A qualitative, exploratory, descriptive study was carried out in 9 patients older than 18 years, diagnosed with cancer, who were treated at the Institute of Cancerology, in outpatient chemotherapy rooms, with a minimum of three months of treatment with curative intention and which had given your informed consent. The total of participants was determined by the theoretical saturation, and the selection of these was for convenience. Unstructured interviews were conducted, recorded and transcribed. The analysis of the information was done under the technique of content analysis. Three categories emerged that reflect the perception that patients have regarding quality care: patient-centered care, care with love and effects of care. Patients highlighted situations that show that care is centered on them, incorporating elements of patient-centered care from the institutional, infrastructure, qualities of care and what for them, in contrast, means inappropriate care. Care with love as a perception of quality care means for patients that the nursing staff must have certain qualities, perceive caring with love as a family affair, limits on care with love and the nurse-patient relationship. Quality care has effects on both the patient and the nursing staff. One of the most relevant effects was the confidence that the patient develops towards the nurse, besides to transform the unreal images about cancer treatment with chemotherapy. On the other hand, care with quality generates a commitment to self-care and is a facilitator in the transit of oncological disease and chemotherapeutic treatment, but from the perception of a healing transit. It is concluded that care with quality from the perception of patients, is a construction that goes beyond the structural issues and is related to an institutional culture of quality that is reflected in the attitude of the nursing staff and in the acts of Care that have positive effects on the experience of chemotherapy and disease. With the results, it contributes to better understand how quality care is built from the perception of patients and to open a range of possibilities for the future development of an individualized instrument that allows evaluating the quality of care from the perception of patients with cancer.

Keywords: nursing care, oncology service hospital, quality management, qualitative studies

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Authors: L. Donelle, S. Regan, R. Booth, M. Kerr, J. McMurray, D. Fitzsimmons

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Palliative home health care provision within the Canadian context is challenged by: (i) a shortage of registered nurses (RN) and RNs with palliative care expertise, (ii) an aging population, (iii) reliance on unpaid family caregivers to sustain home care services with limited support to conduct this ‘care work’, (iv) a model of healthcare that assumes client self-care, and (v) competing economic priorities. In response, an interprofessional team of service provider organizations, a software/technology provider, and health care providers developed and implemented a technology-enabled model of home care, the eShift model of palliative home care (eShift). The eShift model combines communication and documentation technology with non-traditional utilization of health human resources to meet patient needs for palliative care in the home. The purpose of this study was to investigate the structure, processes, and outcomes of the eShift model of care. Methodology: Guided by Donebedian’s evaluation framework for health care, this qualitative-descriptive study investigated the structure, processes, and outcomes care of the eShift model of palliative home care. Interviews and focus groups were conducted with health care providers (n= 45), decision-makers (n=13), technology providers (n=3) and family care givers (n=8). Interviews were recorded, transcribed, and a deductive analysis of transcripts was conducted. Study Findings (1) Structure: The eShift model consists of a remotely-situated RN using technology to direct care provision virtually to patients in their home. The remote RN is connected virtually to a health technician (an unregulated care provider) in the patient’s home using real-time communication. The health technician uses a smartphone modified with the eShift application and communicates with the RN who uses a computer with the eShift application/dashboard. Documentation and communication about patient observations and care activities occur in the eShift portal. The RN is typically accountable for four to six health technicians and patients over an 8-hour shift. The technology provider was identified as an important member of the healthcare team. Other members of the team include family members, care coordinators, nurse practitioners, physicians, and allied health. (2) Processes: Conventionally, patient needs are the focus of care; however within eShift, the patient and the family caregiver were the focus of care. Enhanced medication administration was seen as one of the most important processes, and family caregivers reported high satisfaction with the care provided. There was perceived enhanced teamwork among health care providers. (3) Outcomes: Patients were able to die at home. The eShift model enabled consistency and continuity of care, and effective management of patient symptoms and caregiver respite. Conclusion: More than a technology solution, the eShift model of care was viewed as transforming home care practice and an innovative way to resolve the shortage of palliative care nurses within home care.

Keywords: palliative home care, health information technology, patient-centred care, interprofessional health care team

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Authors: Benyapa Thitimapong, Najwa Niyomdecha

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This qualitative descriptive research aimed to explore the self-care experiences during pregnancy of Muslim adolescents. Twenty participants were first-time Muslim mothers who had pregnancy experienceห under 20 years of age in three Southern border provinces of Thailand. Participants were selected by purposive sampling with inclusion criteria. Data were collected from the in-depth interview and analyzed using content analysis. The findings revealed that Muslim pregnant adolescents take care of themselves in the context of combining self-care in an Islamic way and conventional medicine. There are 2 subthemes: 1) antenatal care with Tok Bidan and 2) health promotion during pregnancy. The finding will help to understand self-care during pregnancy of Muslim adolescents among three Southern border provinces and can apply to nurse educators as a guide to educate and manage an appropriate self-care program for Muslim pregnant adolescents based on cultural diversity.

Keywords: adolescents, muslim, pregnancy, selfcare

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Authors: Aditya Manna, Lalit Kumar Khanra, Shyamal Kumar Sarkar

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Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Objective: To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer’s direct care of palliative patients and their families. Methods: Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. Results: We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2015, 496 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Conclusions: Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

Keywords: palliative care, terminal care, cancer, home care

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Authors: J. Jessa

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Background: Autism is a pervasive developmental disorder, the incidence of which has significantly increased in recent years. Children with autism have impairments in social skills, communication, and imagination. Children with autism has more common than healthy children feeding problems: food selectivity, problems with gastrointestinal tract: diarrhea, constipations, abdominal pain, reflux and others. Many parents of autistic children report that after implementation of gluten-, casein- and sugar free diet those symptoms disappear and even cognitive functions become better. Some children begin to understand speech and to communicate with parents, regain eye contact, become more calm, sleep better and has better concentration. Probably at the root of this phenomenon lies elimination from the diet peptides construction of which is similar to opiates. Enhanced permeability of gut causes absorption of not fully digested opioid-like peptides from food, like gluten and casein and probably others (proteins from soy and corn) which impact on brain of autistic children. Aim of the study: The aim of the study is to assess the safety of gluten-free diet in children with autism, aged 2,5-7. Methods: Participants of the study (n=70) – children aged 2,5-7 with autism are divided into 3 groups. The first group (research group) are patients whose parents want to implement a gluten-free diet. The second group are patients who have been recommended to eliminate from the diet artificial substances, such as preservatives, artificial colors and flavors, and others (control group 1). The third group (control group 2) are children whose parents did not agree for implementation of the diet. Caregivers of children on the diet are educated about the specifics of the diet and how to avoid malnutrition. At the start of the study we exclude celiac disease. Before the implementation of the diet we performe a blood test for patients (morphology, ferritin, total cholesterol, dry peripheral blood drops to detect some genetic metabolic diseases), plasma aminogram) and urine tests (excretion of ions: Mg, Na, Ca, the profile of organic acids in urine), which assess nutritional status as well as the psychological test assessing the degree of the child's psychological functioning (PEP-R). All of these tests will be repeated after one year from the implementation of the diet. Results: To the present moment we examined 42 children with autism. 12 of children are on gluten- free diet. Our preliminary results are promising. Parents of 9 of them report that, there is a big improvement in child behavior, concentration, less aggression incidents, better eye contact and better verbal skills. Conclusion: Our preliminary results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD.

Keywords: gluten free diet, autism spectrum disorder, autism, blood test

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Authors: José Nogueira

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This research aims to analyze the impact of autism spectrum disorders (ASD) in families with children and youth (0-25 years) with ASD in Portugal. The impact will be evaluated on a multidimensional perspective, following the work on the concept of quality life from WHOQOL Group (UN). The study includes quantitative and qualitative methodology. It correlates statistical sources and other information with the data obtained through a survey of a sample of about 100 families with children/youth with ASD (October and November 2013). The results indicate a strong impact of autism on the quality of life for families in all study dimensions. The research shows a negative impact on quality of life for families in material and financial conditions, physical and emotional well-being, career progression, feelings of injustice, social participation and self-perception of happiness. The quality of life remained in the relationship with the family and the spouse, interpersonal relationships and beliefs about himself. The ASD improved the quality of life aspects such as interest, knowledge and exercise of rights on disability, autonomy to make decisions and be able to deal with stress. Other dimensions are contemplated: a detailed characterization of the child/young with ASD and all family members (household composition, relationship status, academic qualifications, occupation, income, and leisure) the impact of diagnosis in the family wellbeing, medical and therapeutic processes, school inclusion, public support, social participation, and the adequacy and implementation of legislation. The study evaluates also the strengths and weaknesses of the Portuguese public rehabilitation system and demonstrates how a good law-in-theory may not solve the problems of families in practice due to the allocation of insufficient public resources, both financial and human resources.

Keywords: autism, families, quality of life, autism spectrum disorder

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Authors: Mekroud Amel

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Emergency departments are known for the workload, the variety of pathologies and the difficulties in their management with the continuous influx of patients The role of our service in the management of patients with two or three mild to moderate organ failures, involving several disciplines at the same time, as well as the effect of this management on the skills and efficiency of our team has been demonstrated Borderline cases between two or three or even more disciplines, with instability of a vital function, which have been successfully managed in the emergency room, the therapeutic procedures adopted, the consequences on the quality and level of care delivered by our team, as well as that the logistical consequences, and the pedagogical consequences are demonstrated. The consequences found are Positive on the emergency teams, in rare situations are negative Regarding clinical situations, it is the entanglement of hemodynamic distress with right, left or global participation, tamponade, low flow with acute pulmonary edema, and/or state of shock With respiratory distress with more or less profound hypoxemia, with haematosis disorder related to a bacterial or viral lung infection, pleurisy, pneumothorax, bronchoconstrictive crisis. With neurological disorders such as recent stroke, comatose state, or others With metabolic disorders such as hyperkalaemia renal insufficiency severe ionic disorders with accidents with anti vitamin K With or without septate effusion of one or more serous membranes with or without tamponade It’s a Retrospective, monocentric, descriptive study Period 05.01.2022 to 10.31.2022 the purpose of our work: Search for a statistically significant link between the type of moderate to severe pathology managed in the emergency room whose problems are multivisceral on the efficiency of the healthcare team and its level of care and optional care offered for patients Statistical Test used: Chi2 test to prove the significant link between the resolution of serious multidisciplinary cases in the emergency room and the effectiveness of the team in the management of complicated cases Search for a statistically significant link : The management of the most difficult clinical cases for organ specialties has given general practitioner emergency teams a great perspective and has been able to improve their efficiency in the face of emergencies received

Keywords: emergency care teams, management of patients with dysfunction of more than one organ, learning curve, quality of care

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Authors: R. Schweighoffer, N. Nagy, E. Reeves, B. Liebig

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Due to aging populations, the need for seamless palliative care provision is of central interest for western societies. An essential aspect of palliative care delivery is the quality of collaboration amongst palliative care providers. Therefore, the current research is based on Bainbridge’s conceptual framework, which provides an outline for the evaluation of palliative care provision. This study is the first one to investigate the predictive validity of spatial distribution on the quantity of interaction amongst various palliative care providers. Furthermore, based on the familiarity principle, we examine whether the extent of collaboration influences the perceived quality of collaboration among palliative care providers in urban versus rural areas of Switzerland. Based on a population-representative survey of Swiss palliative care providers, the results of the current study show that professionals in densely populated areas report higher absolute numbers of interactions and are more satisfied with their collaborative practice. This indicates that palliative care providers who work in urban areas are better embedded into networks than their counterparts in more rural areas. The findings are especially important, considering that efficient collaboration is a prerequisite to achieve satisfactory patient outcomes. Conclusively, measures should be taken to foster collaboration in weakly interconnected palliative care networks.

Keywords: collaboration, healthcare networks, palliative care, Switzerland

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Authors: Prachi Sharma, B. V. Ramkumar

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In current days, autism is a well-known neurodevelopmental disorder that may restrict child development globally. Ignorance or delayed identification or incorrect diagnosis of autism is a major challenge in controlling such an incurable disorder. This may lead to various behavioural complications followed by mental illness in adulthood. Autism is an incurable disorder that is progressive and negatively affects our development globally. This may vary in degree in different skills. However, a deviation from the normal range creates a complex outcome in social and communication areas and restricts or deviates cognitive ability. The primary goal of the present research is to identify and understand the deviations in cognitive, social communication, and behaviour in children during their growing age, with a focus on autism. In this study, five children with mild autism were taken. All the children had achieved normal developmental milestones until the age of one year. The maximum age of observation of children’s development was four years to see the difference in their developmental rates in the areas of cognitive, social communication, and behaviour. The study is based on the parental report about their children from 1 year to 4 years. Videos and pictures of children during their development were also seen as a reference to verify information received by the parents of the children. This research is qualitative, with samples for which were selected using a purposive sampling technique. The data was collected from the OPD, NIEPID RC, NOIDA, India. The data was collected in the form of parental reports based on their observations about their kids. Videos were also seen to verify the information reported by the parents (just shown to verify the facts, not shared). In results, we observed a significant difference in the rate of development in all five children taken for this research. The children having mild autism, at present, showed variations in all three domains (cognitive, social communication, and behaviour). These variations were seen in terms of restricted development in global areas. The result revealed that typical features of ASD had created more cognitive restrictions as compared to the children having ASD features with hyperactivity. Behavioral problems were observed with different levels of severity in the children having ASD with hyperactivity, whereas children with typical ASD are found with some typical problem behaviours like head banging, body rocking, self-biting, etc., with different levels of severity. The social-communication area was observed as equally affected in all children, as no major difference was found in the information received from each parent.

Keywords: autism/ASD, behaviour, cognitive skill, hyperactivity, social-communication skill

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Authors: Sonia Mannan, M. Jobair Alam

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The concept of palliative care in Bangladesh largely remained limited to the sympathetic caring of patients with a life-limiting illness. Quality of Life (QoL) issues are rarely practiced in Bangladesh. Furthermore, palliative medicine, in the perspective of holistic palliative care service, does not have its proper recognition in Bangladesh. Apart from those socio-medical aspects, palliative care patients face legal issues that impact their quality of life, including access to health services and social benefits and dealing with other life-transactions of the patients and their families (such as disposing of property; planning for children). This paper is an attempt to articulate these legal dimensions of the right to palliative care in the context of Bangladesh. The major focus of this paper will be founded on the doctrinal analysis of the constitutional provisions and other relevant legislation on the right to health and their judicial interpretation, which is argued to offer a meaningful space for the right to palliative care. This paper will also investigate the gaps in the said legal framework to better secure such care. In conclusion, a few recommendations are made so that the palliative care practices in Bangladesh are better aligned with international standards, and it can respond more humanely to the patients who need palliative care.

Keywords: Bangladesh, constitution, legal regime, palliative care, quality of life

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Authors: Jolanta Jonak

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All students demonstrate various learning preferences and learning styles that range from visual, auditory to kinesthetic preferences. These learning preferences are further impacted by individual cognitive profiles hat characterizes itself in linguistic strengths, logical- special, inter-or intra- personal, just to name a few. Students from culturally and linguistically diverse backgrounds (CLD) have an increased risk of being misunderstood by many school systems and even medical personnel. Students with disability, specifically Autism, are faced with another layer of learning differences. Research indicates that large numbers of students are not provided the type of education and types of supports they need in order to be successful in an academic environment. Multiple research findings indicate that significant numbers of school staff self-reports that they do not feel adequately prepared to work with students with disability and different learing profiles. It is very important for the school staff to be educated about different learning needs of students with autism spectrum disorders. Having the knowledge, school staff can avoid unnecessary referrals for office referrals and avoid inaccurate decisions about restrictive learning environments. This presentation will illustrate the cognitive differences in students with autism, how to recognize them, and how to support them through Differentiated Instruction. One way to ensure successful education for students with disability is by providing Differentiated Instruction (DI). DI is quickly gaining its popularity in the Unites States as a scientific- research based instructional approach for all students. This form of support ensures that regardless of the students’ learning preferences and cognitive learning profiles, they have an opportunity to learn through approaches that are suitable to their needs. It is extremely important for the school staff, especially school psychologists who often are the first experts to be consulted by educators, to be educated about differences due to learning preference styles and differentiation needs.

Keywords: special education, autism, differentiation, differences, differentiated instruction

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Authors: LouAnne Boyd

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From the perspective of self-advocates, the biggest unaddressed problem is not the symptoms of an autism spectrum diagnosis but the social stigma that accompanies autism. This societal perspective is in contrast to the focus on the majority of interventions. Autism interventions, and consequently, most innovative technologies for autism, aim to improve deficits that occur within the person. For example, the most common Human-Computer Interaction research projects in assistive technology for autism target social skills from a normative perspective. The premise of the autism technologies is that difficulties occur inside the body, hence, the medical model focuses on ways to improve the ailment within the person. However, other technological approaches to support people with autism do exist. In the realm of Human Computer Interaction, there are other modes of research that provide critique of the medical model. For example, critical design, whose intended audience is industry or other HCI researchers, provides products that are the opposite of interventionist work to bring attention to the misalignment between the lived experience and the societal perception of autism. For example, parodies of interventionist work exist to provoke change, such as a recent project called Facesavr, a face covering that helps allistic adults be more independent in their emotional processing. Additionally, from a critical disability studies’ perspective, assistive technologies perpetuate harmful normalizing behaviors. However, these critical approaches can feel far from the frontline in terms of taking direct action to positively impact end users. From a critical yet more pragmatic perspective, projects such as Counterventions lists ways to reduce the likelihood of perpetuating ableism in interventionist’s work by reflectively analyzing a series of evolving assistive technology projects through a societal lens, thus leveraging the momentum of the evolving ecology of technologies for autism. Therefore, all current paradigms fall short of addressing the largest need—the negative impact of social stigma. The current work introduces a new paradigm for technologies for autism, borrowing from a paradigm introduced two decades ago around changing the narrative related to eating disorders. It is the shift from reprimanding poor habits to celebrating positive aspects of eating. This work repurposes Celebratory Technology for Neurodiversity and intended to reduce social stigma by targeting for the public at large. This presentation will review how requirements were derived from current research on autism social stigma as well as design sessions with autistic adults. Congruence between these two sources revealed three key design implications for technology: provide awareness of the autistic experience; generate acceptance of the neurodivergence; cultivate an appreciation for talents and accomplishments of neurodivergent people. The current pilot work in Celebratory Technology offers a new paradigm for supporting autism by shifting the burden of change from the person with autism to address changing society’s biases at large. Shifting the focus of research outside of the autistic body creates a new space for a design that extends beyond the bodies of a few and calls on all to embrace humanity as a whole.

Keywords: neurodiversity, social stigma, accessibility, inclusion, celebratory technology

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Authors: Tania Chalton

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In June 2013, an independent review of the Liverpool Care Pathway (LCP) identified a number of problems with the implementation of the LCP in the UK and recommended that it be replaced by individual care plans for each patient. As a result of the UK findings, in November 2013 the Ministry of Health (MOH) commissioned the Palliative Care Council to initiate a programme of work to investigate an appropriate approach for the care of people in their last days of life in New Zealand (NZ). The Last Days of Life Working Group commenced a process to develop national consensus on the care of people in their last days of life in April 2014. In order to develop its advice for the future provision of care to people in their last days of life, the Working Group (WG) established a comprehensive work programme and as a result has developed a series of working papers. Specific areas of focus included: An analysis of the UK Independent Review findings and an assessment of these findings to the NZ context. A stocktake of services providing care to people in their last days of life, including aged residential care (ARC); hospices; hospitals; and primary care. International and NZ literature reviews of evidence and best practice. Survey of family to understand the consumer perspective on the care of people in their last days of life. Key aspects of care that required further considerations for NZ were: Terminology: clarify terminology used in the last days of life and in relation to death and dying. Evidenced based: including specific review of evidence regarding, spiritual, culturally appropriate care as well as dementia care. Diagnosis of dying: need for both guidance around the diagnosis of dying and communication with family. Workforce issues: access to an appropriate workforce after hours. Nutrition and hydration: guidance around appropriate approaches to nutrition and hydration. Symptom and pain management: guidance around symptom management. Documentation: documentation of the person’s care which is robust enough for data collection and auditing requirements, not ‘tick box’ approach to care. Education and training: improved consistency and access to appropriate education and training. Leadership: A dedicated team or person to support and coordinate the introduction and implementation of any last days of life model of care. Quality indicators and data collection: model of care to enable auditing and regular reviews to ensure on-going quality improvement. Cultural and spiritual: address and incorporate any cultural and spiritual aspects. A final document was developed incorporating all the evidence which provides guidance to the health sector on best practice for people at end of life: “Principles and guidance for the last days of life: Te Ara Whakapiri”.

Keywords: end of life, guidelines, New Zealand, palliative care

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Authors: Tania Lisboa, Angela Voyajolu, Adam Ockelford

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The positive impact of music on the development of children with autism is widely acknowledged: music offers a unique channel for communication, wellbeing and self-regulation, as well as access to culture and a means of creative engagement. Yet, no coherent program exists for parents, carers and teachers to follow with their children in the early years, when the need for interventions is often most acute. Hence, research and the development of resources is urgently required. Autism is a project with children on the autism spectrum. The project aims at promoting the participants’ engagement with music through involvement in specially-designed musical activities with parents and carers. The main goal of the research is to verify the effectiveness of newly designed resources and strategies, which are based on the Sounds of Intent in the Early Years (SoI-EY) framework of musical development. This is a pilot study, comprising case studies of five children with autism in the early years. The data comprises semi-structured interviews, observations of videos, and feedback from parents on resources. Interpretative Phenomenological Analysis was chosen to analyze the interviews. The video data was coded in relation to the SoI-EY framework. The feedback from parents was used to evaluate the resources (i.e. musical activity cards). The participants’ wider development was also assessed through selected elements of the Early Years Foundation Stage (EYFS), a national assessment framework used in England: specifically, communication, language and social-emotional development. Five families of children on the autism spectrum (aged between 4-8 years) participated in the pilot. The research team visited each family 4 times over a 3-month period, during which the children were observed, and musical activities were suggested based on the child’s assessed level of musical development. Parents then trialed the activities, providing feedback and gathering further video observations of their child’s musical engagement between visits. The results of one case study will be featured in this paper, in which the evidence suggests that specifically tailored musical activity may promote communication and social engagement for a child with language difficulties on the autism spectrum. The resources were appropriate for the children’s involvement in musical activities. Findings suggest that non-specialist musical engagement with family and carers can be a powerful means to foster communication. The case study featured in this paper illustrates this with a child of limited verbal ability. There is a need for further research and development of resources that can be made available to all those working with children on the autism spectrum.

Keywords: autism, development, music education, resources

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Authors: Ronit Chakraborty, Sugata Banerji

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There has been a marked increase in the reported prevalence of Autism Spectrum Disorder (ASD) among children in the US over the past two decades. This research has analyzed the growth in state-level ASD prevalence against 45 different potentially explanatory factors, including socio-economic, demographic, healthcare, public policy, and political factors. The goal was to understand if these factors have adequate predictive power in modeling the differential growth in ASD prevalence across various states and if they do, which factors are the most influential. The key findings of this study include (1) the confirmation that the chosen feature set has considerable power in predicting the growth in ASD prevalence, (2) the identification of the most influential predictive factors, (3) given the nature of the most influential predictive variables, an indication that a considerable portion of the reported ASD prevalence differentials across states could be attributable to over and under diagnosis, and (4) identification of Florida as a key outlier state pointing to a potential under-diagnosis of ASD there.

Keywords: autism spectrum disorder, clustering, machine learning, predictive modeling

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Authors: Desiderio S. Camitan IV

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The standard view of lay people in the Philippine society is that young children do not lie and that if they do, their lies are easily detectable. The present study investigated the deceptive behaviors of 373 children aged 2-8 using the temptation resistance paradigm. Children were instructed that they will participate in a game where they are to guess the color of a candy placed inside a downward facing cup. After the instruction was given to them, they are left alone in a room with the cup on top of a table for 15 minutes. The researcher observed the number of children who peeked at the card as well as number of those who confessed to the said act. Age, gender, IQ, and having autism seem to influence the frequency of peeking and confession of the participants.

Keywords: cheating, lying, dishonesty, young children, guessing game, autism

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Authors: Szu-Yi Chang, Jiin-Ru Rong

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This paper discussed a case involving a young female patient with schizophrenia. The patient's condition was deteriorating, and she was becoming increasingly reliant on her family to take care of her, and as her father did not understand the illness well and was afraid that others will learn about the presence of a mentally ill individual in their family, he and the patient's mother were thus unable to cope with the patient's deteriorating condition, which in turn caused her to suffer from a lack of self-confidence and low self-esteem. The patient received nursing care from July 26th to October 25th, 2017, during which counseling, family visits, and phone interviews were carried out, and her condition was monitored. By referring to the practical ability indicators for community psychiatric mental health nursing that were developed by the psychiatric mental health nurses' association of the Republic of China, defining categories such as 'self-construction,' 'self-management,' 'disease management,' and 'family nursing,' and incorporating indicators for empowerment and various skills into the steps and strategies used for nursing care, we will able to help the patient to construct her own identity, raise her self-esteem, improve her ability to independently perform activities of daily living, strengthen her disease management ability, and gradually build up her life management skills. The patient's family was also encouraged to communicate more among themselves, so as to align them with the nursing care objectives of improving the patient's ability to adapt to community life and her disease. The results indicated that the patient was able to maintain her mental stability within her community. By implementing effective self-management and maintaining a routine life, the patient was able to continue her active participation in community work and rehabilitation activities. Improvements were also achieved with respect to family role issues by establishing mutual understanding among the patient's family members and gaining their support. It is recommended that mental health nurses can leverage their community mental health nursing skills and the related strategies to promote adaptation to community life among mental life patients.

Keywords: community psychiatric mental health nursing, family nursing, schizophrenia, self-management

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Authors: Yi-Jiun Chou, Ying-Hsuan Li, Yi-Jung Liu, Hsin-Yu Chiang, Hsuan-Ching Wang

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Background: Patients received therapeutic hypothermia (TH) after resuscitation from cardiac arrest are more dependent on continue and intensive nursing care. It involves many difficult steps, especially achieving target body temperature. To our best knowledge, there is no consensus or recommended standards on nursing practice of TH. Aim: The aim of this study is to increase the completion rate of nursing care at therapeutic hypothermia. Methods: We took five measures: (1) Amendment of nursing standards of therapeutic hypothermia; (2) Amendment of TH checklist items to nursing records; (3) Establishment of monitor procedure; (4) Design each period of TH care reminder cards; (5) Providing in-service training sections of TH for ICU nursing staff. Outcomes: The completion rate of nursing care at therapeutic hypothermia increased from 78.1% to 89.3%. Conclusion: The project team not only increased the completion rate but also improved patient safety and quality of care.

Keywords: therapeutic hypothermia, nursing, critical care, quality of care

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Authors: Priyanka Sharma, Manoj Jais, Poonam Gupta, Suraiya K. Ansari, Ravinder Kaur

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Introduction: As much as the Health Care is necessary for the population, so is the management of the Biomedical waste produced. Biomedical waste is a wide terminology used for the waste material produced during the diagnosis, treatment or immunization of human beings and animals, in research or in the production or testing of biological products. Biomedical waste management is a chain of processes from the point of generation of Biomedical waste to its final disposal in the correct and proper way, assigned for that particular type of waste. Any deviation from the said processes leads to improper disposal of Biomedical waste which itself is a major health hazard. Proper segregation of Biomedical waste is the key for Biomedical Waste management. Improper disposal of BMW can cause sharp injuries which may lead to HIV, Hepatitis-B virus, Hepatitis-C virus infections. Therefore, proper disposal of BMW is of upmost importance. Health care establishments segregate the Biomedical waste and dispose it as per the Biomedical waste management rules in India. Objectives: This study was done to observe the current trends of Biomedical waste generated in a tertiary care Hospital in Delhi. Methodology: Biomedical waste management rounds were conducted in the hospital wards. Relevant details were collected and analysed and sites with maximum Biomedical waste generation were identified. All the data was cross checked with the commons collection site. Results: The total amount of waste generated in the hospital during January 2014 till December 2014 was 6,39,547 kg, of which 70.5% was General (non-hazardous) waste and the rest 29.5% was BMW which consisted highly infectious waste (12.2%), disposable plastic waste (16.3%) and sharps (1%). The maximum quantity of Biomedical waste producing sites were Obstetrics and Gynaecology wards with a total Biomedical waste production of 45.8%, followed by Paediatrics, Surgery and Medicine wards with 21.2 %, 4.6% and 4.3% respectively. The maximum average Biomedical waste generated was by Obstetrics and Gynaecology ward with 0.7 kg/bed/day, followed by Paediatrics, Surgery and Medicine wards with 0.29, 0.28 and 0.18 kg/bed/day respectively. Conclusions: Hospitals should pay attention to the sites which produce a large amount of BMW to avoid improper segregation of Biomedical waste. Also, induction and refresher training Program of Biomedical waste management should be conducted to avoid improper management of Biomedical waste. Healthcare workers should be made aware of risks of poor Biomedical waste management.

Keywords: biomedical waste, biomedical waste management, hospital-tertiary care, New Delhi

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Authors: Elizabeth Grier, Meg Gemmill, Mary Martin, Leora Reiter, Herman Tang, Alexandra Donaldson, Isis Lunsky, Mia Wu

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Background: Individuals with Cerebral Palsy (CP) and/or IDD face numerous physical and mental health challenges, including difficulty accessing effective palliative care. The aim of this study is to assess the knowledge and comfort of healthcare providers in providing community-based palliative care for patients with Cerebral Palsy (CP) and severe to profound Intellectual and Developmental Disabilities (IDD). Methods: This study includes a mixed methods approach obtaining both quantitative and qualitative data. Quantitative data from palliative care practitioners was obtained through an online survey assessing comfort in symptom management, grief assessment, and goals of care discussion. This survey was distributed to physicians and allied health practitioners across Canada through the College of Family Physicians of Canada Member Interest Groups for Palliative Care and for IDD. Survey results guided the development of a semi-structured interview template, which was used to conduct a focus group on the same topic. Participants were four palliative care providers (3 physicians and one spiritual care practitioner). The focus group transcript is currently undergoing thematic analysis using NVivo 12 software. Results: 57 palliative care practitioners completed the survey. 87% of participants indicated they have provided palliative care services for persons with CP and/or IDD. Findings suggest practitioners are somewhat confident in identifying specific physical symptoms (dyspnea, pressure ulcers) but less confident in identifying physical/emotional pain, addressing grief, and prognosticating life expectancy in this population. 54% of responses indicated they had little/no training on palliating those with CP or IDD, and 45% somewhat or strongly disagree members of their profession can manage symptoms for this population. Focus group analysis is underway, and results will be available at the time of the poster presentation. Conclusion: Persons with CP and IDD are more likely to experience severe health inequities when accessing palliative care. Results of this study suggest further education is needed for palliative care professionals to address the barriers and challenges in providing palliative care to this patient population.

Keywords: palliative care, symptom management, health equity, community healthcare, intellectual and developmental disabilities

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Authors: Paul M. H. J. Roekaerts

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In recent years, it became clear that much intensive care (ICU) survivors develop a post-intensive care syndrome (PICS) consisting of psychiatric, cognitive and physical problems for a prolonged period after their ICU stay. Physical inactivity and delirium during the ICU stay are the main determinants of the post-ICU PICS. This presentation will focus on delirium, its epidemiology, prevalence, effect on outcome, risk factors and the current standard of care for managing delirium. Because ICU delirium is a predictor of prolonged length-of-stay in the ICU and of death, the use of a delirium prevention bundle (DPB) becomes mandatory in every ICU. In this presentation, a DPB bundle will be discussed consisting of six components: pain, sedation, sleep, sensory and intellectual stimulation, early mobilization, and hydration. For every of the six components, what to do and what not to do will be discussed. The author will present his own institutional policy on pharmacological and non-pharmacological interventions in the management of delirium. The component ‘early mobilization’ will be discussed more in detail, as this component is extremely important in the prevention of delirium as well as in the prevention of the PICS. The author will conclude his presentation with the remaining areas of uncertainties/work and research to be done.

Keywords: delirium, delirium prevention bundle, early mobilisation in intensive care (ICU), post-intensive care syndrome (PICS)

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Authors: Adekunle O. Afolabi, Pekka Toivanen

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The world is expected to experience growth in the number of ageing population, and this will bring about high cost of providing care for these valuable citizens. In addition, many of these live with chronic diseases that come with old age. Providing adequate care in the face of rising costs and dwindling personnel can be challenging. However, advances in technologies and emergence of the Internet of Things are providing a way to address these challenges while improving care giving. This study proposes the integration of recommendation systems into homecare to provide real-time recommendations for effective management of people receiving care at home and those living with chronic diseases. Using the simplified Training Logic Concept, stakeholders and requirements were identified. Specific requirements were gathered from people living with cancer. The solution designed has two components namely home and community, to enhance recommendations sharing for effective care giving. The community component of the design was implemented with the development of a mobile app called Recommendations Sharing Community for Aged and Chronically Ill People (ReSCAP). This component has illustrated the possibility of real-time recommendations, improved recommendations sharing among care receivers and between a physician and care receivers. Full implementation will increase access to health data for better care decision making.

Keywords: recommendation systems, Internet of Things, healthcare, homecare, real-time

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Authors: Engida Yisma, Berhanu Dessalegn, Ayalew Astatkie, Nebreed Fesseha

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Background: The use of the partograph is a well-known best practice for quality monitoring of labour and subsequent prevention of obstructed and prolonged labour. However, a number of cases of obstructed labour do happen in health facilities due to poor quality of intrapartum care. Methods: A cross-sectional quantitative study assessed knowledge and utilization of partograph among obstetric care givers in public health institutions of Addis Ababa, Ethiopia using a structured interviewer administered questionnaire. The collected data was analyzed using SPSS version 16.0. Logistic regression analysis was used to identify factors associated with knowledge and use of partograph among obstetric care givers. Results: Knowledge about the partograph was fair: 189 (96.6%) of all the respondents correctly mentioned at least one component of the partograph, 104 (53.3%) correctly explained the function of alert line and 161 (82.6%) correctly explained the function of action line. The study showed that 112 (57.3%) of the obstetric care givers at public health institutions reportedly utilized partograph to monitor mothers in labour. The utilization of the partograph was significantly higher among obstetric care givers working in health centres (67.9%) compared to those working in hospitals (34.4%) [Adjusted OR = 3.63(95%CI: 1.81, 7.28)]. Conclusions: A significant percentage of obstetric care givers had fair knowledge of the partograph and why it is necessary to use it in the management of labour and over half of obstetric care givers reported use of the partograph to monitor mothers in labour. Pre-service and on-job training of obstetric care givers on the use of the partograph should be given emphasis. Mandatory health facility policy is also recommended to ensure safety of women in labour in public health facilities in Addis Ababa, Ethiopia.

Keywords: partograph, knowledge, utilization, obstetric care givers, public health institutions

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Authors: Shang-Sin Shiu, Shu-I Chin, Hsiu-Ju Chen, Ru-Yu Lien

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The Hospice and Palliative Care Act has undergone three revisions, making it less challenging for terminal patients to withdraw life support systems. However, the adequacy of care before withdraw is a crucial factor in end-of-life medical treatment. The author observed that intensive care unit (ICU) nursing staff often rely on simple flowcharts or word of mouth, leading to inadequate preparation and failure to meet patient needs before withdraw. This results in confusion or hesitation among those executing the process. Therefore, there is a motivation to improve the withdraw of patient care processes, establish standardized procedures, ensure the accuracy of removal execution, enhance end-of-life care self-efficacy for nursing staff, and improve the overall quality of care. The investigation identified key issues: the lack of applicable guidelines for ICU care for withdraw from life-sustaining, insufficient education and training on withdraw and end-of-life care, scattered locations of withdraw-related tools, and inadequate self-efficacy in withdraw from life-sustaining care. Solutions proposed include revising withdraw care processes and guidelines, integrating tools and locations, conducting educational courses, and forming support groups. After the project implementation, the accuracy of removal cognition improved from 78% to 96.5%, self-efficacy in end-of-life care after removal increased from 54.7% to 93.1%, and the correctness of care behavior progressed from 27.7% to 97.8%. It is recommended to regularly conduct courses on removing life support system care and grief consolation to enhance the quality of end-of-life care.

Keywords: the intensive care unit (ICU) patients, nursing staff, withdraw life support systems, self-efficacy

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Authors: Haatembo Mooya

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Cross-culturally, exclusive maternal care of infants is an exception, rather than a rule. In most traditional non-Western societies, child care is shared within the family while in most middle class Western societies parents tend to rely more on ‘hired hands’ for support. In both contexts however, a common caregiver is the sibling. Despite this, the phenomenon of sib-care has remained relatively understudied. Cultural and gender differences in sib-care and attachment were explored using a retrospective survey instrument comparing Zambian and Dutch college students. The total study sample (N = 394) comprised of 200 Zambian students from the University of Zambia and 194 Dutch students from Leiden University, the Netherlands. We tested four main hypotheses. Firstly, we hypothesized that the Zambian subjects performed more sib-care than Dutch subjects. Secondly we hypothesized that female participants performed more sib-care than males participants, both among the Zambian and Dutch subjects, especially when parents are not at home. Thirdly, we hypothesized that larger family size was associated with more sib-care. Finally, we hypothesized that securely attached participants performed more sib-care than their less securely attached peers. Results indicated that sib-care was prevalent in both Zambian and Dutch samples. Zambian subjects performed more sib-care than Dutch subjects, with females performing more sib-care than males, both when parents were at home (F(2, 244) = 62.09, p < .01) and when parents were not at home (F(2, 237) = 51.28, p < .01). We also found that family size and attachment related avoidance and anxiety were not significant predictors of sib-care. It is concluded that sib-care is understudied, not only in Africa but also in Western societies and that females perform more sib-care than males, especially when the parents are not at home. In addition, attachment related avoidance and anxiety appear to be more related to the quality than the quantity of sib-care provided.

Keywords: sibling, sib-care, attachment, Africa, Zambia, the Netherlands

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Authors: Joselyne Rugema, Innocent Twagirayezu, Aimable Nkurunziza, Alice Nyirazigama, Vedaste Bagweneza, Belancilla Nikuze

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Introduction: Burn injuries among children are associated with major complications. Early health care seeking and appropriate management are crucial in saving lives and preventing complications. Objective: To assess home-based management practices and health seeking behaviors among caregivers of children admitted with burn injuries at selected hospitals in Rwanda. Methods: A cross-sectional descriptive study was conducted among caregivers of children admitted with burn injuries at three hospitals in Kigali. A semi-structured questionnaire was used to collect the data that were analyzed using SPSS version 25. Statistical software Results: Most of the children with burn injuries had median age of 36 months, and 89.9% had second-degree burns. 92.4% of burns happened at home and 63.3% were scalds. Only 18% of the caregivers seek care immediately after children’s burn injuries. About 2.5% reported not seeking any care after burn injuries and 3.8% sought care from traditional healers. 65.9% of the participants used wrong practices before seeking care such as applying honey, cooking oil and urine to the burn injuries. Transportation difficulties before consulting health facilities were the main reported faced barriers to success health care (86.1%). Conclusion: Immediate health seeking behavior was low. Wrong practices including application of harmful products to burn injuries are common in the community. There is a need for community based interventions to prevent burn injuries at home and to empower the community with appropriate actions to take after injuries.

Keywords: adolescent pregnancy, qualitative design, childbearing, teenage mothers

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Authors: Fuad M. Alkoot

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Different experimental technologies such as microarray sequencing have been proposed to generate high-resolution genetic data, in order to understand the complex dynamic interactions between complex diseases and the biological system components of genes and gene products. However, the generated samples have a very large dimension reaching thousands. Therefore, hindering all attempts to design a classifier system that can identify diseases based on such data. Additionally, the high overlap in the class distributions makes the task more difficult. The data we experiment with is generated for the identification of autism. It includes 142 samples, which is small compared to the large dimension of the data. The classifier systems trained on this data yield very low classification rates that are almost equivalent to a guess. We aim at reducing the data dimension and improve it for classification. Here, we experiment with applying a multistage PCA on the genetic data to reduce its dimensionality. Results show a significant improvement in the classification rates which increases the possibility of building an automated system for autism detection.

Keywords: PCA, gene expression, dimensionality reduction, classification, autism

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Authors: Peter Brink

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Much of the research examining sexuality in long-term care focus on individual experiences, specifically their past, present, and future lived experiences. We know little about long-term care home policies, how they relate to the LGBT community, or how accommodating long-term care homes are to the LGBT+ community. In many ways, residents who identify as LGBT+ have been invisible in long-term care homes. Up until the not-to-distant past, homosexuality was illegal, and discrimination was acceptable. Canada’s LGBT population has also suffered because of the HIV/AIDS epidemic. For these and other reasons, members of the LGBT community might resist entering long-term care or attempt to keep their sexuality secret. The goal of any long-term care home is to be a welcoming place, to display signs of inclusion, and to help residents and staff feel that they are embraced. From the perspective of the long-term care home, it is possible that many of these facilities do not necessarily see the need to mention gender identity or sexual orientation in their welcoming materials. However, from the perspective of the invisible minority, it may be important that these homes be more than just welcoming. This study examined the role of institutional policies in long-term care for residents who identify as LGBT.

Keywords: long-term care, LGBT, HIV/AIDS, policy

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Authors: Sawyer Spurry

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Problem: Palliative care providers at an academic medical center in Maryland stated medical intensive care unit (MICU) patients are often referred late in their hospital stay. The MICU has performed well below the hospital quality performance metric of 80% of patients who expire with expected outcomes should have received a palliative care consult within 48 hours of admission. Purpose: The purpose of this quality improvement (QI) project is to increase palliative care utilization in the MICU through the implementation of a Nurse-Driven PalliativeTriggerTool to prompt the need for specialty palliative care consult. Methods: MICU nursing staff and providers received education concerning the implications of underused palliative care services and the literature data supporting the use of nurse-driven palliative care tools as a means of increasing utilization of palliative care. A MICU population specific criteria of palliative triggers (Palliative Care Trigger Tool) was formulated by the QI implementation team, palliative care team, and patient care services department. Nursing staff were asked to assess patients daily for the presence of palliative triggers using the Palliative Care Trigger Tool and present findings during bedside rounds. MICU providers were asked to consult palliative medicinegiven the presence of palliative triggers; following interdisciplinary rounds. Rates of palliative consult, given the presence of triggers, were collected via electronic medical record e-data pull, de-identified, and recorded in the data collection tool. Preliminary Results: Over 140 MICU registered nurses were educated on the palliative trigger initiative along with 8 nurse practitioners, 4 intensivists, 2 pulmonary critical care fellows, and 2 palliative medicine physicians. Over 200 patients were admitted to the MICU and screened for palliative triggers during the 15-week implementation period. Primary outcomes showed an increase in palliative care consult rates to those patients presenting with triggers, a decreased mean time from admission to palliative consult, and increased recognition of unmet palliative care needs by MICU nurses and providers. Conclusions: Anticipatory findings of this QI project would suggest a positive correlation between utilizing palliative care trigger criteria and decreased time to palliative care consult. The direct outcomes of effective palliative care results in decreased length of stay, healthcare costs, and moral distress, as well as improved symptom management and quality of life (QOL).

Keywords: palliative care, nursing, quality improvement, trigger tool

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