Search results for: home based palliative care

Authors: Qiuhu Shao

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Community home-based care service system, which is based on the family pension, supported by community pension and supplied by institutions pension, is an effective pension system to solve the current situation of China's accelerated aging. However, due to the fundamental realities of our country, the government is not able to bear the unilateral supply of the old-age service of the community. Therefore, based on the theory of welfare pluralism, the participation of social organizations in the home-based care service center has become an important part of the diversified supply of the old-age service for the elderly. Meanwhile, the home-based care service industry is still in the early stage, the management is relatively rough, which resulted in a large number of social resources waste. Thus, scientific, objective and long-term implementation is needed for social organizations to participate in home-based care services to guide its performance management. In order to realize the design of the performance management system, the author has done a research work that clarifies the research status of social organization's participation in home-based care service. Relevant theories such as welfare pluralism, community care theory, and performance management theory have been used to demonstrate the feasibility of data envelopment analysis method in social organization performance research. This paper analyzes the characteristics of the operation mode of the home-based care service center, and hackles the national as well as local documents, standards and norms related to the development of the home-based care industry, particularly studies those documents in Nanjing. Based on this, the paper designed a set of performance management PDCA system for home-based care service center in Nanjing and clarified each step of the system in detail. Subsequently, the research methods of performance evaluation and performance management and feedback, which are two core steps of performance management have been compared and screened in order to establish the overall framework of the performance management system of the home-based care service center. Through a large number of research, the paper summarized and analyzed the characteristics of the home-based care service center. Based on the research results, combined with the practice of the industry development in Nanjing, the paper puts forward a targeted performance evaluation index system of home-based care service center in Nanjing. Finally, the paper evaluated and sub-filed the performance of 186 home-based care service centers in Nanjing and then designed the performance optimization direction and performance improvement path based on the results. This study constructs the index system of performance evaluation of home-based care service and makes the index detailed to the implementation level, and constructs the evaluation index system which can be applied directly. Meanwhile, the quantitative evaluation of social organizations participating in the home-based care service changed the subjective impression in the previous practice of evaluation.

Keywords: data envelopment analysis, home-based care, performance management, social organization

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Authors: Chaliya Wamaloon, Malee Chaisaena, Nusara Prasertsri

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Informal caregivers providing home-based palliative and end-of-life (EOL) care to people with advanced cancer is needed, however, there has not been develop caregiver skills for the EOL in cancer patients. The aim of this research was to study the model development of caregiver skills for the EOL in cancer patients. Mixed methods research was conducted in 3 phases. All subjects were in Ubon Rathchathani Cancer Hospital including 30 EOL cancer patient caregivers, 30 EOL cancer patients, and 111 health care professionals who provided care for the EOL cancer patients and 30 EOL target participants who had been trained to be cancer patient caregivers. The research tools were questionnaires, semi structured interviews, and caregiver skills questionnaires. Data were analyzed by using percentage, mean, standard deviation, pair t-test, and content analysis. The result from this study showed the model development of caregiver skills for cancer patients consisted of 9 domains skills: 1. monitoring, 2. interpreting, 3. making decisions, 4. taking action, 5. making adjustments, 6. providing hands-on care, 7. accessing resources, 8. working together with the ill patients, and 9. navigating the healthcare system. The model composed of skills development curriculum for cancer patient caregivers, Manual of palliative care for caregivers, diary of health care records for cancer patients, and the evaluation model of development of caregiver skills for EOL cancer patients. The results of the evaluation in the development model of caregiver skills for EOL cancer patients showed that the caregivers were satisfied with the model of development for caregiver skills at a high level. The comparison of the caregiver skills before and after obtaining the development of caregivers skills revealed that it improved at a statistically significant level (p < 0.05).

Keywords: caregiver, caregiver skills, cancer patients, end of life

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Authors: Kulveer Sandhu

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Background: In 1999, the Government of Canada legalized the use of cannabis for the therapeutic purpose (CTP); however, its users remain highly vulnerable to stigma and are judged by care providers and nonusers of cannabis. Findings from a literature review suggest health care providers (HCPs), including nurses in palliative care settings, lack knowledge about medical cannabis. For this reason, it is important to enhance HCPs’awarenessand knowledge of medical cannabis. Significance of the Project: Nurses are the first point of contact and spend more time with patients than other care providers; it is, therefore, important for them to be informed about CTPto provide quality and equitable care for medical cannabis users. Although nurses and other HCPs want information on CTP, the topic is rarely included in their educational curriculum. The purpose of this project is to create an evidence informed Package designed to increase knowledge among palliative care nurses about CTP. The information package will empower palliative nurses to help palliative patients make informed decisions about their treatment plan. Method: The information package will include a basic overview of the endocannabinoid system, common cannabis plants and products, and methods of consumption, as well as information to help nurses better understand consumption and harm reduction. The package will also include a set of cannabis fact sheets for nurses. Each fact sheet will comprise a high-level overview with graphics followed by a description of medical cannabis with links and references. At the end of the learning package, there are five self-reflection questions that allow nurses to examine their personal values, attitudes, and practices regarding medical cannabis. These questions will help each nurse understand their personal approach towards CTP and its users.

Keywords: medical cannabis, improve knowledge, cannabis for therapeutic purpose (CTP), patient experience, palliative care

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Authors: Kyung Min Kwom, Young Joo Lee

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Purpose: Up to 90% of pancreatic cancer patient suffer from neuropathic pain. In palliative care setting, pain control in a pancreatic cancer patient is one of the major goals. Ketamine is a NMDA receptor antagonist effective in neuropathic pain. Also, there have been studies about opioid sparing effect of ketamine. This study was held in palliative care unit among pancreatic cancer patients to find out the factors related to ketamine use and the opioid sparing effect. Methods: Medical records of pancreatic cancer patients admitted to St. Mary’s hospital palliative care unit from 2013.1 to 2014.12 were reviewed. Patients were divided into two categories according to ketamine use. Also, opioid use before and after ketamine use was compared in ketamine group. Results: Compared to non ketamine use group, patients in ketamine group required a higher dose of opioid. Total opioid dose, daily opioid dose, number of daily rescue medication, daily average rescue dose were statistically significantly higher in ketamine group. Opioid requirement was increased after ketamine administration. Conclusion: In this study, ketamine group required more opioid. Ketamine is frequently considered in patients with severe pain, requiring high amount of opioid. Also, ketamine did not have an opioid sparing effect. Future studies about palliative use of ketamine in a larger number of patients are required.

Keywords: ketamine, opioid sparing, palliative care, pancreatic cancer

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Authors: Louise Elizabeth Bolton

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Statement of the problem: There are an estimated 328 million cases of COPD worldwide. It is likely to become the third biggest cause of death by 2030. The impact of living with palliative care needs arising from COPD disrupts an individual’s existential situation. Understandings of individuals' existential situations within COPD are limited within the research literature and are rarely addressed within clinical practice, yet existential suffering has been linked to poor health-related quality of life for those living with other chronic conditions. The purpose of this integrative review is to provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. Methods: This is an integrative review undertaken in accordance with PRISMA guidelines. Nine electronic databases were searched from April 2019 to January 2021. Thirty-five empirical research papers of both qualitative and quantitative methodologies, alongside systematic literature reviews, were included. Data analysis was undertaken using an integrative thematic analysis approach. Findings: Identified themes of existential suffering when living with palliative care needs arising from COPD are as follows: Liminality, Lamented Life, Loss of Personal Liberty, Life Meaning and Existential isolation. The absence of life meaning and purpose was of most importance to patients. Conclusion and Significance: This integrative review provides a synthesis of international evidence upon the presence of existential suffering. It is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact, requiring further exploration of both its physical and psychological impact. Rediscovery of life meaning diminishes feelings of worthlessness and hopelessness in daily life and facilitates feelings of inner peace. For those with COPD living with such a relentless symptom burden, a positive existential situation is desirable.

Keywords: palliative care, COPD, existential suffering, end of life care

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Authors: Li-Ting Kung, Hui-Zhu Chen, Hsin-Tzu Lee, Wan-Yin Hsu

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Patients with spinal cord injury combined with diabetic nephropathy may under a lot of painful conditions due to complications related to the illness itself or treatments, such as recurrent pressure ulcers, autonomic and peripheral neuropathy, as well as dialysis, for long term. This case report illustrated the nursing experience of transferring a spine cord injure patient who received hemodialysis due to adverse lifestyle-induced diabetic nephropathy to the hospice ward. Nursing care was provided in this patient from July 25th to August 30th, 2015. The tool of 'Gordon’s 11-item functional health assessment' and clinical observation, interviews as well as physical examination were used as data collections. Based on results of health assessment as above, the patient’s health problems were identified as the following: impaired skin integrity, chronic pain, and hopeless. Besides to relieve the symptom of pain due to disease or the treatment of hemodialysis and provide wound care, the first author also played a role to assist the patient to achieve his goal of receiving the hospice palliative care. Finally, with much effort of nurses to communicate with medical teams between the surgical and hospice wards, the patient was transferred to the hospice ward to have fulfilled his last wish of having a good death. We hope this nursing experience can be applied to other similar cases in the future.

Keywords: diabetic nephropathy, hospice care, palliative care, spinal cord injury

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Authors: Hafsat Mustapha Hanga

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The purpose of the this study was to investigate the effect of broken home on students' academic performance. Therefore, it focused on academic performance and Parental care of the student from and intact home from a cognitive motivational perceptive. The broken and intact home and also to find out if they differ in parental care this is done by using 376 subjects out of the population of 21,378. The sample was obtained using stratified random sampling techniques as the population contained sub-groups the study design was ex-post facto. The data was collected using 3 kind of instruments. To test the first and second hypotheses. Junior secondary school placement examination result was obtained to test the academic performance of the boys fron broken home and boys from and boys from intact home and then girl from broken home and girls from intact home.T-Test was used in the analysis of first and second hypotheses. For the third hypotheses two different kind of questionnaires were developed, the first was used to identify student that are from broken home while the second was for testing parental care between the subject. Chi-square was used to analyze the third hypotheses. Alkh the three 3 hypotheses were tested and rejected and were all in favor of student from intact home. The study found that there was a significant difference in the academic performance of the boys from brokeb and boys from intact home. When boys from intact home better then those boys from broken home. It also reveals that a student from a intact from intact home receives good parental care, love and concern than those from broken home.on the strength of these findings the need to establish an institution which will help those parent who have parenting problems was stressed and also the need to foster. Home school partnership was also stressed and advocate.

Keywords: broken homes, academic performance, parental care, foster

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Authors: J. F. Pollo Gaspary, F. Peron Gaspary, E. M. Simão, R. Concatto Beltrame, G. Orengo de Oliveira, M. S. Ristow Ferreira, J.C. Mairesse Siluk, I. F. Minello, F. dos Santos de Oliveira

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Background: Although palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care is suggested, which includes complementary and alternative services aimed at improving the well-being of patients and their families. The palliative aquatics care multi-device (AuBento) uses several electromagnetic techniques to decrease pain and promote well-being through relaxation and interaction among patients, specialists, and family members. Aim: The scope of this paper is to present a preliminary design study of a device capable of exploring the various existing theories on the biomedical application of magnetic fields. This will be achieved by standardizing clinical data collection with sensory integration, and adding new therapeutic options to develop an advanced palliative aquatics care, innovating in symptom and pain management. Methods: The research methodology was based on the Work Package Methodology for the development of projects, separating the activities into seven different Work Packages. The theoretical basis was carried out through an integrative literature review according to the specific objectives of each Work Package and provided a broad analysis, which, together with the multiplicity of proposals and the interdisciplinarity of the research team involved, generated consistent and understandable complex concepts in the biomedical application of magnetic fields for palliative care. Results: Aubento ambience was idealized with restricted electromagnetic exposure (avoiding data collection bias) and sensory integration (allowing relaxation associated with hydrotherapy, music therapy, and chromotherapy or like floating tank). This device has a multipurpose configuration enabling classic or exploratory options on the use of the biomedical application of magnetic fields at the researcher's discretion. Conclusions: Several patients in diverse therapeutic contexts may benefit from the use of magnetic fields or fluids, thus validating the stimuli to clinical research in this area. A device in controlled and multipurpose environments may contribute to standardizing research and exploring new theories. Future research may demonstrate the possible benefits of the aquatics care multi-device AuBento to improve the well-being and symptom control in palliative care patients and their families.

Keywords: advanced palliative aquatics care, magnetic field therapy, medical device, research design

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Authors: Daniella Arieli

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As human population is ageing, globally, we are faced with the need to find solutions for the care of older people who have reached the stage of needing full-time nursing care. Basically, there are two basic alternatives: 1. moving the individual to an institutional setting, a care home, or other form of residency, and 2. Arranging care for them in their own home, what is known as “ageing in place”. As ageing in place is becoming popular in many parts of the world, there is a need to understand its’ everyday consequences for all the involved parties: the care recipient, her/his family members and the live-in care workers. This is crucial because choosing home care means that the role of the care recipient’s relatives becomes very demanding and requires a level of support and responsibility that is often beyond what families can offer. This is particularly challenging when the older person faces dementia. While most Western countries offer a range of social services, many citizens around the world find the care provided by governments and associated social support structures insufficient. Individuals and families find themselves in the position of having to take on the responsibility themselves and find a path for the care of frail members, while facing considerable personal burdens and challenging dilemmas. The aim of this work is to discuss those challenges. The study is based on an ethnographic study of home care for older people in Israel.

Keywords: aging in place, family caregivers, policy making, qualitative research

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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Background: A mixed method systematic review was undertaken in order to explore issues related to the experiences of health care providers and parents in the care of children with palliative care needs. The aims of this systematic review were to identify existing evidence about the experiences of communication in the care of children with palliative care needs, to appraise the research conducted in this area and to identify gaps in the literature in order to recommend for future related studies. Method: A mixed method systematic review of research on the experience of communication in the care of children with palliative care needs, conducted with parents and health professionals was undertaken. The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period of 2000-2016. Inclusion was limited to studies of communication experience in the care of children with palliative care needs. Result: Thirty-eight studies were found. The studies were conducted in a variety of countries: Uganda, Jordan, USA, UK, Taiwan, Turkey, Ireland, Poland, Brazil, Australia, Switzerland, Sweden, Netherland, Lebanon, Spain, Greece, and China. The current review shows that parents tend to protect their children when they are discussing their illnesses with them, particularly where they have a life-threatening or life-limiting condition. The approach of parents towards the discussion of sensitive issues concerning death with their children is significantly affected by the cultural background of the families. Conservative cultures encourage collusion behaviours which tend to keep children unaware of the incurable nature of the disease. The major communication challenges reported by health professionals are facing difficulties in judging how much information should be given to parents, responding to difficult questions, conflicts with families and inadequate skills to support grieving families. Conclusion: It is probably significant for the future studies to consider the change of parent-child communication experience over time in order to understand how the parents could change their interaction styles with their children according to the different stages of their children’s disease. Moreover, further studies are required to investigate the experience of communication of parents of children with non-malignant life-threatening and life-limiting illnesses.

Keywords: children with life-threatening or life- limiting illnesses, end of life, experience of communication, healthcare care providers, paediatric palliative care

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Authors: Jovina Concepcion Bachynski, Lenora Duhn, Idevania G. Costa, Pilar Camargo-Plazas

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Kidney failure is a life-limiting condition for which treatment, such as dialysis (hemodialysis and peritoneal dialysis), can exact a tremendously high physical and psychosocial symptom burden. Kidney failure can be severe enough to require a palliative approach to care. The term supportive care can be used in lieu of palliative care to avoid the misunderstanding that palliative care is synonymous with end-of-life or hospice care. Kidney supportive care, encompassing advance care planning, is an approach to care that improves the quality of life for people receiving dialysis through early identification and treatment of symptoms throughout the disease trajectory. Advanced care planning involves ongoing conversations about the values, goals, and preferences for future care between individuals and their healthcare teams. Kidney supportive care is underutilized and often initiated late in this population. There is evidence to indicate nurses are not providing the necessary elements of supportive kidney care. Dialysis nurses’ delay or lack of engagement in supportive care until close to the end of life may result in people dying without receiving optimal palliative care services. Using Charmaz’s constructivist grounded theory, the purpose of this doctoral study is to develop a substantive theory that explains the process of engagement in supportive care by nurses working in dialysis settings in Canada. Through initial purposeful and subsequent theoretical sampling, 23 nurses with current or recent work experience in outpatient hemodialysis, home hemodialysis, and peritoneal dialysis settings drawn from across Canada were recruited to participate in two intensive interviews using the Zoom© teleconferencing platform. Concurrent data collection and data analysis, constant comparative analysis of initial and focused codes until the attainment of theoretical saturation, and memo-writing, as well as researcher reflexivity, have been undertaken to aid the emergence of concepts, categories, and, ultimately, the constructed theory. At the time of abstract submission, data analysis is currently at the second level of coding (i.e., focused coding stage) of the research study. Preliminary categories include: (a) focusing on biomedical care; (b) multi-dimensional challenges to having the conversation; (c) connecting and setting boundaries with patients; (d) difficulty articulating kidney-supportive care; and (e) unwittingly practising kidney-supportive care. For the conference, the resulting theory will be presented. Nurses working in dialysis are well-positioned to ensure the delivery of quality kidney-supportive care. This study will help to determine the process and the factors enabling and impeding nurse engagement in supportive care in dialysis to effect change for normalizing advance care planning conversations in the clinical setting. This improved practice will have substantive beneficial implications for the many individuals living with kidney failure and their supporting loved ones.

Keywords: dialysis, kidney failure, nursing, supportive care

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Authors: G. Natuhwera, M. Rabwoni, P. Ellis, A. Merriman

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Aims: Health workers are likely to document patients’ care inaccurately, especially when using new and revised case tools, and this could negatively impact patient care. This study set out to; (1) assess nurses’ and clinicians’ documentation practices when using a new patients’ continuation case sheet (PCCS) and (2) explore nurses’ and clinicians’ experiences regarding documentation of patients’ information in the new PCCS. The purpose of introducing the PCCS was to improve continuity of care for patients attending clinics at which they were unlikely to see the same clinician or nurse consistently. Methods: This was a mixed methods study. The cross-sectional inquiry retrospectively reviewed 100 case notes of active patients on hospice and palliative care program. Data was collected using a structured questionnaire with constructs formulated from the new PCCS under study. The qualitative element was face-to-face audio-recorded, open-ended interviews with a purposive sample of one palliative care clinician, and four palliative care nurse specialists. Thematic analysis was used. Results: Missing patients’ biogeographic information was prevalent at 5-10%. Spiritual and psychosocial issues were not documented in 42.6%, and vital signs in 49.2%. Poorest documentation practices were observed in past medical history part of the PCCS at 40-63%. Four themes emerged from interviews with clinicians and nurses-; (1) what remains unclear and challenges, (2) comparing the past with the present, (3) experiential thoughts, and (4) transition and adapting to change. Conclusions: The PCCS seems to be a comprehensive and simple tool to be used to document patients’ information at subsequent visits. The comprehensiveness and utility of the PCCS does paper to be limited by the failure to train staff in its use prior to introducing. The authors find the PCCS comprehensive and suitable to capture patients’ information and recommend it can be adopted and used in other palliative and hospice care settings, if suitable introductory training accompanies its introduction. Otherwise, the reliability and validity of patients’ information collected by this PCCS can be significantly reduced if some sections therein are unclear to the clinicians/nurses. The study identified clinicians- and nurses-related pitfalls in documentation of patients’ care. Clinicians and nurses need to prioritize accurate and complete documentation of patient care in the PCCS for quality care provision. This study should be extended to other sites using similar tools to ensure representative and generalizable findings.

Keywords: documentation, information case sheet, palliative care, quality improvement

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Authors: Lie-Fen Lin, Tzu-Hsuan Lin, Ching-Heng Lin

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Hospice care for terminally ill patients provides not only a better quality of life but also cost-saving benefits. However, the utilization of home-based hospice care (HBH care) remains low even for countries covered by National Health Insurance (NHI) programs in Taiwan. In the current commercial insurance policy, only hospital-based hospice benefits were covered. It may have an influence on the insureds chosen to receive end-of-life care in a hospitalized manner. Thus, how to propose a feasible method to advocate HBH care utilization rate of public health policies is an important issue. A total of 130,219 cancer decedents in the year 2011-2013 from the National Health Insurance Research Database (NHIRD) in Taiwan were included in this study. By adding a day volume pays benefits of HBH care as a commercial insurance rider, will provide alternative benefits for the insureds. A multiple-state Markov chain model was incorporated to estimate the transition intensities of patients in different states at the end of their lives (Non-hospice, HBH, hospital-based hospice), and the premiums were estimated. HBH care insurance benefits provide financial support and reduce the burden of care for patients. The rate-making of this product is very sensitive while the utilization rate is rising, especially for high ages. The proposed HBH care insurance is a feasible way to reduce the financial burden, enhance the care quality and family satisfaction of insureds. Meanwhile, insurance companies can participate in advocating a good medical policy to enhance the social image. In addition, the medical costs of NHI can reduce effectively.

Keywords: home-based hospice care, commercial insurance, Markov chain model, the day volume pays

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Authors: Tulika Bhattacharyya, Suhita C. Chatterjee

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West Bengal, one of the most rapidly ageing states in India, has inadequate structure for elder care. Therefore, there is an urgent need to improve elder care which involves focusing on different care settings where the elderly exists, like - Homes, Hospitals and Long-Term Care facilities (e.g. - Old Age Homes, Hospices). The study explores various elder care settings, with the intention to develop an understanding about them, and thereby generate comprehensive information about the entire spectrum of elder care in Kolkata. Empirical data are collected from the elderly and their caregivers in different settings. The tools for data collection are narratives, in-depth interviews and focus group discussions, along with field observations. Mixed method design is adopted to analyze the complexities of elder care in different set ups. The major challenges of elder care in private Homes are: architecturally inadequate housing conditions, paucity of financial support and scarcity of skilled caregivers. While the key factors preventing the Hospital and Long-Term Care Facilities from providing elder care services are inadequate policies and set governmental standards for elder care for the hospitalized elderly in various departments of the Hospital and the elderly residing in different kinds of Long Term Care Facilities. The limitations in each care setting results in considerable neglect and abuse of the elderly. The major challenges in elder care in West Bengal are lack of continuum between different care settings/ peripheral location of private Homes within public health framework and inadequate state Palliative policy- including narcotic regulations. The study suggests remedial measures to improve the capacity to deliver elder care in different settings.

Keywords: elder care settings, family caregiver, home care, geriatric hospital care, long term care facility

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Authors: Suhathai Tosangwarn, Philip Clissett, Holly Blake

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Background: High prevalence of depression has been reported among older adults living in care homes in Thailand, associated with physical impairment, low social support, low self-esteem and particularly stigma associated with living in a care home. However, little is understood about how such stigma is experienced among Thai care home residents. This study examines residents’ perceptions of stigma and their strategies for coping with stigma. Method/Design: Case study research was used to gain an in-depth view about the stigma of residents’ perspectives and experiences from two care homes in the northeast of Thailand by conducting an in-depth interview and non-participant observation. Qualitative interviews were conducted with 30 older residents (aged >60 years), purposively sampled from both care homes. Non-participant observation was conducted in various public spaces of the care homes, including the dining room, corridors, and activities areas for approximately one to two hours per day at different times; morning and afternoon including weekdays and weekend in both care homes for one month. Thematic analysis was used to analyse the data. Results: The study identified three major themes related to the causes of stigma, the reactions towards stigma and the mitigating factors. Negative beliefs about care homes, negative attitudes, and stereotypes toward the elderly and perceptions of unequal power relations between staff and residents were the main factors precipitating stigma. Consequently, residents exhibited negative emotions and behaviours, including depressive symptoms, while living in care homes. Residents reported the use of particular coping strategies, including accessing support from the public and staff and engaging in care home activities which these helped them to cope with their perception of stigma. Conclusion: Improved understanding of the underlying factors behind perceived stigma in care home residents may help to prevent depression and reduce perceptions of stigma associated with living in a care home, by informing strategy, supportive intervention and guidelines for appropriate care for older Thai residents.

Keywords: care home, depression, older adult, stigma, Thailand

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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: 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: J. F. Pollo Gaspary, F. Peron Gaspary, E. M. Simão, R. Concatto Beltrame, G. Orengo de Oliveira, M. S. Ristow Ferreira, F. Sartori Thies, I. F. Minello, F. dos Santos de Oliveira

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Background: The immune system has evolved several mechanisms to protect the host against cancer, and it has now been suggested that the expansion of its functions may prevent tumor growth and control the symptoms of cancer patients. Two techniques, ozone therapy and pulsed electromagnetic fields (PEMF), are independently associated with an increase in the immune system functions and they maybe help palliative care of patients in these conditions. Case Report: A patient with rectal adenocarcinoma with metastases decides to interrupt the clinical chemotherapy protocol due to refractoriness and side effects. As a palliative care alternative treatment it is suggested to the patient the use of ozone therapy associated with PEMF techniques. Results: The patient reports an improvement in well-being, in autonomy and in pain control. Imaging tests confirm a pause in tumor growth despite more than 60 days without using classic treatment. These results associated with palliative care alternative treatment stimulate the return to the chemotherapy protocol. Discussion: This case illustrates that these two techniques can contribute to the control of tumor growth and refractory symptoms, such as pain, probably by enhancing the immune system. Conclusions: The potential use of the combination of these two therapies, ozone therapy and PEMF therapy, can contribute to palliation of cancer patients, alone or in combination with pharmacological therapies. The conduct of future investigations on this paradigm can elucidate how much these techniques contribute to the survival and well-being of these patients.

Keywords: cancer, complementary and alternative medicine , ozone therapy, palliative care, PEMF therapy

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Authors: Andrea Zielke-Nadkarni

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Pain management is a question of quality of life and an indicator for nursing quality. Chronic pain which is predominant in oncology and palliative nursing situations is perceived today as a multifactorial, individual emotional experience with specific characteristics including the sociocultural dimension when dealing with migrant patients. This dimension of chronic pain is of major importance in professional nursing of migrant patients in hospices or palliative care units. Objectives of the study are: 1. To find out more about the sociocultural views on pain and nursing care, on customs and nursing practices connected with pain of both Turkish Muslim and German Christian women, 2. To improve individual and family oriented nursing practice with view to sociocultural needs of patients in severe pain in palliative care. In a qualitative-explorative comparative study 4 groups of women, Turkish Muslims immigrants (4 from the first generation, 5 from the second generation) and German Christian women of two generations (5 of each age group) of the same age groups as the Turkish women and with similar educational backgrounds were interviewed (semistructured ethnographic interviews using Spradley, 1979) on their perceptions and experiences of pain and nursing care within their families. For both target groups the presentation will demonstrate the following results in detail: Utterance of pain as well as “private” and “public” pain vary within different societies and cultures. Permitted forms of pain utterance are learned in childhood and determine attitudes and expectations in adulthood. Language, especially when metaphors and symbols are used, plays a major role for misunderstandings. The sociocultural context of illness may include specific beliefs that are important to the patients and yet seem more than far-fetched from a biomedical perspective. Pain can be an influential factor in family relationships where respect or hierarchies do not allow the direct utterance of individual needs. Specific resources are often, although not exclusively, linked to religious convictions and are significantly helpful in reducing pain. The discussion will evaluate the results of the study with view to the relevant literature and present nursing interventions and instruments beyond medication that are helpful when dealing with patients from various socio-cultural backgrounds in painful end-oflife situations.

Keywords: pain management, migrants, sociocultural context, palliative care

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Authors: Sarah Misplon, Wim Marneffe, Johan Helling, Jana Missiaen, Inge Decock, Dries Myny, Steve Lervant, Koen Vaneygen

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The aim of this study was twofold. First, we investigated whether the current funding from the national health insurance (NHI) of home hospitalization (HH) for oncological patients is sufficient in Belgium. Second, we compared patient’s experiences and preferences of HH to the standard of care (SOC). Two HH models were examined in three Belgian hospitals and three home nursing organizations. In a first HH model, the blood draw and monitoring prior to intravenous therapy were performed by a trained home nurse at the patient’s home the day before the visit to the day hospital. In a second HH model, the administration of two subcutaneous treatments was partly provided at home instead of in the hospital. Therefore, we conducted (1) a bottom-up micro-costing study to compare the costs and revenues for the providers (hospitals and home care organizations), and (2) a cross-sectional survey to compare patient’s experiences and preferences of the SOC group and the HH group. Our results show that HH patients prefer HH and none of them wanted to return to SOC, although the satisfaction of patients was not significantly different between the two categories. At the same time, we find that costs associated to HH are higher overall. Comparing revenues with costs, we conclude that the current funding from NHI of HH for oncological patients is insufficient.

Keywords: cost analysis, health insurance, preference, home hospitalization

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Authors: Ewelina Zdebska

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A social worker is an integral part of an interdisciplinary team working with the child and his family in a terminal state. Social support is an integral part of the medical procedure in the care of hospice. This is the basis and prerequisite of full treatment and good care of the child - patient, whose illness often finds at least the expected period of his life when his personal and legal issues are not regulated, and the family burdened with the problem requires care and support specialists - professionals. Hospice for Children in Krakow: a palliative care team operating in the province of Krakow and Malopolska, conducts specialized care for terminally ill children in place of their residence from the time when parents and doctors decided to end of treatment in hospital, allows parents to carry out medical care at home, provides parents social and legal assistance and provides care, psychological support and friendship to families throughout the life of the child's illness and after his death, as long as it is needed. The social worker in a hospice does not bear the burden of solving social problems, which is the responsibility of other authorities, but provides support possible and necessary at the moment. The most common form of assistance is to provide information on benefits, which for the child and his family may be subject to any treatment and fight for the life and health of a child. Employee assists in the preparation and completion of documents, requests to increase the degree of disability because of progressive disease or Allowance care because of the inability to live independently. It works in settling all the issues with the Department of Social Security, as well as with the Municipal and District Team Affairs of disability. Seeking help and support using multi-faceted childcare. With the Centres for Social Welfare contacts are also often on the organization of additional respite care for the sick at home (care), especially in the work of the other members of the family or if the family can not cope with the care and needs extra help. Hospice for Children in Cracow completing construction of Poland's first Respite Care Centre for chronically and terminally ill children, will be an open house where children suffering from chronic and incurable diseases and their families can get professional help, whenever - when they need it. The social worker has to pick up a very important role in caring for a terminally ill child. His presence gives a little patient and family the opportunity to be at this difficult time together while organizing assistance and support.

Keywords: social worker, care, terminal care, hospice

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Authors: Asfa Hussain, Chee Tang, Mien Nguyen

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Introduction: The safe usage of medications is dependent on clear, well-documented prescribing. Medical drug charts should be regularly checked to ensure that they are fit for purpose. Aims: The purpose of this study was to evaluate whether the Isabel Hospice drug charts were effective or prone to medical errors. The aim was to create a comprehensive palliative care drug chart in line with medico-legal guidelines and to minimise drug administration and prescription errors. Methodology: 50 medical drug charts were audited from March to April 2020, to assess whether they complied with medico-legal guidelines, in a hospice within East of England. Meetings were held with the larger multi-disciplinary team (MDT), including the pharmacists, nursing staff and doctors, to raise awareness of the issue. A preliminary drug chart was created, using the input from the wider MDT. The chart was revised and trialled over 15 times, and each time feedback from the MDT was incorporated into the subsequent template. In the midst of the COVID-19 pandemic in September 2020, the finalised drug chart was trialled. 50 new palliative drug charts were re-audited, to evaluate the changes made. Results: Prescribing and administration errors were high prior to the implementation of the new chart. This improved significantly after introducing the new drug charts, therefore improving patient safety and care. The percentage of inadequately documented allergies went down from 66% to 20% and incorrect oxygen prescription from 40% to 16%. The prescription drug-drug interactions decreased by 30%. Conclusion: It is vital to have clear standardised drug charts, in line with medico-legal standards, to allow ease of prescription and administration of medications and ensure optimum patient-centred care. This closed loop audit demonstrated significant improvement in documentation and prevention of possible fatal drug errors and interactions.

Keywords: palliative care, drug chart, medication errors, drug-drug interactions, COVID-19, patient safety

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Authors: Jaci Mastrandrea

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Background: The National Comprehensive Cancer Network (NCCN) recommends that healthcare institutions have established processes for integrating palliative care (PC) into cancer treatment and that all cancer patients be screened for PC needs upon initial diagnosis as well as throughout the entire continuum of care (National Comprehensive Cancer Network, 2021). Early PC screening is directly correlated with improved patient outcomes. The Sky Lakes Cancer Treatment Center (SLCTC) is an institution that has access to PC services yet does not have protocols in place for identifying patients with palliative needs or a standardized referral process. The aim of this quality improvement project is to improve early access to PC services by establishing a standardized screening and referral process for outpatient oncology patients. Method: The sample population included all adult patients with an oncology diagnosis who presented to the SLCTC for treatment during the project timeline from March 15th, 2022, to April 29th, 2022. The “Palliative and Supportive Needs Assessment'' (PSNA) screening tool was developed from validated and evidence-based PC referral criteria. The tool was initially implemented using paper forms and later was integrated into the Epic-Beacon EHR system. Patients were screened by registered nurses on the SLCTC treatment team. Nurses responsible for screening patients received an educational inservice prior to implementation. Patients with a PSNA score of three or higher were considered to be a positive screen. Scores of five or higher triggered a PC referral order in the patient’s EHR for the oncologist to review and approve. All patients with a positive screen received an educational handout on the topic of PC, and the EHR was flagged for follow-up. Results: Prior to implementation of the PSCNA screening tool, the SLCTC had zero referrals to PC in the past year, excluding referrals to hospice. Data was collected from the first 100 patient screenings completed within the eight-week data collection period. Seventy-three percent of patients met criteria for PC referral with a score greater than or equal to three. Of those patients who met referral criteria, 53.4% (39 patients) were referred for a palliative and supportive care consultation. Patients that were not referred to PC upon meeting the criteria were flagged in the EHR for re-screening within one to three months. Patients with lung cancer, chronic hematologic malignancies, breast cancer, and gastrointestinal malignancy most frequently met criteria for PC referral and scored highest overall on the scale of 0-12. Conclusion: The implementation of a standardized PC screening tool at the SLCTC significantly increased awareness of PC needs among cancer patients in the outpatient setting. Additionally, data derived from this quality improvement project supports the national recommendation for PC to be an integral component of cancer treatment across the entire continuum of care.

Keywords: oncology, palliative care, symptom management, symptom screening, ambulatory oncology, cancer, supportive care

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Authors: Walid A. Alkeridy, Arwa Aljasser, Khalid Mohammed Alayed, Saad Alsaad, Amani S. Alqahtani, Claire Ann Lim, Sultan H. Alamri, Doaa Zainhom Mekkawy, Mohammed Al-Sofiani

Abstract:

Introduction: The history of publicly funded Home Health Care (HHC) service in Saudi Arabia dates back to 1991. The first HC program was launched to provide palliative home care services for patients with terminal cancer. Thereafter, more programs launched across Saudi Arabia most remarkably was launching the national program for HHC by the Ministry Of Health (MOH) in 2008. The national HHC MOH program is mainly providing long-term care home care services for over 40,000 Saudi citizens. The scope of the HHC service program provided by the Saudi MOH is quite diverse, ranging from basic nursing care to specialized care programs, e.g., home peritoneal dialysis, home ventilation, home infusion therapy, etc. Objectives: The primary aim of our study is to report the prevalence of chronic conditions among Saudi people receiving long-term HHC services. Secondary aims include identifying the predictors of mortality among individuals receiving long-term HHC services and studying the association between frailty and poor health outcomes among HHC users. Methods: We conducted a retrospective and cross-sectional data collection from participants receiving HHC services at King Saud University Medical City, Riyadh, Saudi Arabia. Data were collected from electronic health records (EHR), patient charts, and interviewing caregivers from the year 2019 to 2022. We assessed functional performance by Katz's activity of daily living and the Bristol Activity of Daily Living Scale (BADLS). A trained health care provider assessed frailty using the Clinical Frailty Scale (CFS). Mortality was assessed by reviewing the death certificates if patients were hospitalized through discharge status ascertainment from EHR. Results: The mean age for deceased individuals in HHC was 78.3 years. Over twenty percent of individuals receiving HHC services were readmitted to the hospital. The following variables were statistically significant between deceased and alive individuals receiving HHC services; clinical frailty scale, the total number of comorbid conditions, and functional performance based on the KATZ activity of daily living scale and the BADLS. We found that the strongest predictors for mortality were pressure ulcers which had an odds ratio of 3.75 and p-value of < 0.0001, and the clinical frailty scale, which had an odds ratio of 1.69 and p-value of 0.002, using multivariate regression analysis. In conclusion, our study found that pressure ulcers and frailty are the strongest predictors of mortality for individuals receiving home health care services. Moreover, we found a high rate of annual readmission for individuals enrolled in HHC, which requires further analysis to understand the possible contributing factors for the increased rate of hospital readmission and develop strategies to address them. Future studies should focus on designing quality improvement projects aimed at improving the quality of life for individuals receiving HHC services, especially those who have pressure ulcers at the end of life.

Keywords: homecare, Saudi, prevalence, chronic

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Authors: N. Uaphongsathorn, C. Worawong, S. Thaewpia

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Background and significance: The population is aging in Thai society, the elderly dependent is at great risk of various functional, psychological, and socio-economic problems as well as less access to health care. They may require long term care at home to maximize their functional abilities and activities of daily living and to improve their quality of life during their own age. Therefore, there is a need to develop a home-based long term care to meet the long term care needs of elders dependent. Methods: The research purpose was to develop long term care model among the elderly dependent in Chaiyaphum province in Northeast region of Thailand. Action Research which is composing of planning, action, observation, and reflection phases was used. Research was carried out for 12 months in all sub-districts of 6 districts in Chaiyaphum province. Participants (N = 1,010) participating in the processes of model development were comprised of 3 groups: a) a total of 110 health care professionals, b) a total of 600 health volunteers and family caregivers and c) a total of 300 the elderly dependent with chronically medical illnesses or disabilities. Descriptive statistics and content analysis were used to analyze data. Findings: Results have shown that the most common health problems among elders dependent with physical disabilities to function independently were cardiovascular disease, dementia, and traffic injuries. The development of home-based long term care model among elders dependent in Chaiyaphum province was composed of six key steps. They are: a) initiating policies supporting formal and informal caregivers for the elder dependent in all sub-districts, b) building network and multidisciplinary team, c) developing 3-day care manager training program and 3-day care provider training program d) training case managers and care providers for the elderly dependent through team and action learning, e) assessing, planning and providing care based on care individual’s needs of the elderly dependent, and f) sharing experiences for good practice and innovation for long term care at homes in district urban and rural areas. Among all care managers and care providers, the satisfaction level for training programs was high with a mean score of 3.98 out of 5. The elders dependent and family caregivers addressed that long term care at home could contribute to improving life’s daily activities, family relationship, health status, and quality of life. Family caregivers and volunteers have feeling a sense of personal satisfaction and experiencing providing meaningful care and support for elders dependent. Conclusion: In conclusion, a home-based long term care is important to Thai elders dependent. Care managers and care providers play a large role and responsibility to provide appropriate care to meet the elders’ needs in both urban and rural areas in Thai society. Further research could be rigorously studied with a larger group of populations in similar socio-economic and cultural contexts.

Keywords: elderly people, care manager, care provider, long term care

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Authors: Varsha Reddy Jayar

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Background: Our elderly family members deserve our best care. It's our responsibility to ensure they're healthy and safe. The population of India is increasing rapidly. People are literally being born in the streets, and there is a high growth on taxes and healthcare costs. Indian families are challenged with taking care of everyone. When you have elderly parents and a demanding job, it can be difficult to take care of them. You might not have enough time to care for them when you're already working or dealing with emotional difficulties. Living alone in old age can cause older individuals to face many health risks. Many seniors find living and caring for themselves challenging when they live by themselves. This study explored the factors that affect whether or not elderly people choose to live in old age homes. Methods: This study was carried out on 123 elderly people living in different old age homes in Karnataka, India. The reason for their residence at the home was explored using an interview. Results: It was found that the most common reason for living in an old age home is due to abuse from children and grandchildren; the majority reported were Daughter in law issues in the family specific to the adjustment and understanding amongst them. Conclusion: More and more elderly people in India are choosing to stay in old age homes as they get older. The government and voluntary agencies must have some sort of arrangements for institutional support.

Keywords: old age home, elderly, Aging, challenges of aging

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Authors: Rosemary Saunders, Courtney Glass, Karla Seaman, Karen Gullick, Julie Andrew, Anne Wilkinson, Ashwini Davray

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Current literature demonstrates that most Australians receive end-of-life care in a hospital setting, despite most hoping to die within their own home. The necessity for high quality end-of-life care has been emphasised by the Australian Commission on Safety and Quality in Health Care and the National Safety and Quality in Health Services Standards depict the requirement for comprehensive care at the end of life (Action 5.20), reinforcing the obligation for continual organisational assessment to determine if these standards are suitably achieved. Limited research exploring clinical staff perspectives of end-of-life care delivery has been conducted within an Australian private health context. This study aimed to investigate clinical staff member perceptions of end-of-life care delivery at a private hospital in Western Australia. The study comprised of a multi-faceted mixed-methods methodology, part of a larger study. Data was obtained from clinical staff utilising surveys and focus groups. A total of 133 questionnaires were completed by clinical staff, including registered nurses (61.4%), enrolled nurses (22.7%), allied health professionals (9.9%), non-palliative care consultants (3.8%) and junior doctors (2.2%). A total of 14.7% of respondents were palliative care ward staff members. Additionally, seven staff focus groups were conducted with physicians (n=3), nurses (n=26) and allied health professionals including social workers (n=1), dietitians (n=2), physiotherapists (n=5) and speech pathologists (n=3). Key findings from the surveys highlighted that the majority of staff agreed it was part of their role to talk to doctors about the care of patients who they thought may be dying, and recognised the importance of communication, appropriate training and support for clinical staff to provide quality end-of-life care. Thematic analysis of the qualitative data generated three key themes: creating the setting which highlighted the importance of adequate resourcing and conducive physical environments for end-of-life care and to support staff and families; planning and care delivery which emphasised the necessity for collaboration between staff, families and patients to develop care plans and treatment directives; and collaborating in end-of-life care, with effective communication and teamwork leading to achievable care delivery expectations. These findings contribute to health professionals better understanding of end-of-life care provision and the importance of collaborating with patients and families in care delivery. It is crucial that health care providers implement strategies to overcome gaps in care, so quality end-of-life care is provided. Findings from this study have been translated into practice, with the development and implementation of resources, training opportunities, support networks and guidelines for the delivery of quality end-of-life care.

Keywords: clinical staff, end-of-life care, mixed-methods, private hospital.

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Authors: Katie Jerram, Jacqui Nevols, Rebecca Howes, Hayley Richardson, Debbie Suso, Thomas Batten, Reny Mathai

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Pyomyositis is an uncommon acute purulent skeletal muscle infection, usually caused by Staphylococcus aureus, occurring either spontaneously or following local trauma. Immunocompromise is a risk factor. It presents with pyrexia, pain, and tenderness of the affected muscle, which may have a firm ‘woody’ feel. Management usually involves surgery and prolonged courses of antibiotics, but alongside these active treatments, palliation of symptoms such as pain is also a priority. A short case series of diabetic inpatients under the care of the Renal Medicine team with pyomyositis is presented, demonstrating that Hospital Palliative Care Teams may be well placed to provide symptom management advice by working jointly with the patient’s medical or surgical team. A review of the literature on the management of pain in pyomyositis is also presented, and there was no clear consensus on the best strategy. It may be that a combination of analgesics and adjuncts is the most effective strategy, perhaps combined with the holistic approach used within palliative care.

Keywords: pyomyositis, pain, palliation, analgesia

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Authors: Amir Mohammad Fathollahi Fard, Mostafa Hajiaghaei-Keshteli, Mohammad Mahdi Paydar

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With increasing life expectancy in developed countries, the role of home care services is highlighted by both academia and industrial contributors in Home Health Care Supply Chain (HHCSC) companies. The main decisions in such supply chain systems are the location of pharmacies, the allocation of patients to these pharmacies and also the routing and scheduling decisions of nurses to visit their patients. In this study, for the first time, an integrated model is proposed to consist of all preliminary and necessary decisions in these companies, namely, location-allocation-routing model. This model is a type of NP-hard one. Therefore, an Imperialist Competitive Algorithm (ICA) is utilized to solve the model, especially in large sizes. Results confirm the efficiency of the developed model for HHCSC companies as well as the performance of employed ICA.

Keywords: home health care supply chain, location-allocation-routing problem, imperialist competitive algorithm, optimization

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Authors: Robert L. Fine, Zhiyong Yang, Christy Spivey, Bonnie Boardman, Maureen Courtney

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Importance: Barriers to traditional advance care planning (ACP) and advance directive (AD) creation have limited the promise of ACP/AD for individuals and families, the healthcare team, and society. Reengineering ACP by using a web-based, consumer-driven process has recently been suggested. We report early experience with such a process. Objective: Begin to analyze the potential of the creation and use of ACP/ADs as generated by a consumer-friendly, digital process by 1) assessing the likelihood that consumers would create ACP/ADs without structured intervention by medical or legal professionals, and 2) analyzing the responses to determine if the plans can help doctors better understand a person’s goals, preferences, and priorities for their medical treatments and the naming of healthcare agents. Design: The authors chose 900 users of MyDirectives.com, a digital ACP/AD tool, solely based on their state of residence in order to achieve proportional representation of all 50 states by population size and then reviewed their responses, summarizing these through descriptive statistics including treatment preferences, demographics, and revision of preferences. Setting: General United States population. Participants: The 900 participants had an average age of 50.8 years (SD = 16.6); 84.3% of the men and 91% of the women were in self-reported good health when signing their ADs. Main measures: Preferences regarding the use of life-sustaining treatments, where to spend final days, consulting a supportive and palliative care team, attempted cardiopulmonary resuscitation (CPR), autopsy, and organ and tissue donation. Results: Nearly 85% of respondents prefer cessation of life-sustaining treatments during their final days whenever those may be, 76% prefer to spend their final days at home or in a hospice facility, and 94% wanted their future doctors to consult a supportive and palliative care team. 70% would accept attempted CPR in certain limited circumstances. Most respondents would want an autopsy under certain conditions, and 62% would like to donate their organs. Conclusions and relevance: Analysis of early experience with an all-digital web-based ACP/AD platform demonstrates that individuals from a wide range of ages and conditions can engage in an interrogatory process about values, goals, preferences, and priorities for their medical treatments by developing advance directives and easily make changes to the AD created. Online creation, storage, and retrieval of advance directives has the potential to remove barriers to ACP/AD and, thus, to further improve patient-centered end-of-life care.

Keywords: Advance Care Plan, Advance Decisions, Advance Directives, Consumer; Digital, End of Life Care, Goals, Living Wills, Prefences, Universal Advance Directive, Statements

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