Search results for: paediatric palliative care

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: 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: Miriam Colleran, Barbara Sheehy-Skeffington

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Background: Patients with intellectual disabilities have specific palliative care needs, which can affect how resources and services are planned for this type of patient population. Aim: The purpose of this practice review is to assess the indications for, numbers of and outcomes of care for adults with intellectual disabilities referred to a specialist palliative care service over a two-year period. Service utilization aspects considered included the frequency of home visits by a specialist palliative care doctor or clinical nurse specialist and the number of hospice admissions that occurred for the patients. Method: A retrospective review was carried out of persons 18 years and older with intellectual disabilities referred to a specialist palliative care service. A manual review was carried out of the register using the place of residence and diagnosis in addition to the patients known to the clinicians who had intellectual disabilities. Results: 16 persons with intellectual disabilities were identified as being referred during that time. However, this may be an underestimate. 8 women and 8 men were referred with an age range of 50 to 81 years old. 4 patients referred did not have home visits from the specialist palliative care team. A range of 2 to 12 phone calls per person occurred by the specialist palliative care team regarding this cohort of patients. For some patients, the care is ongoing. Sadly, other patients died. Conclusion: Providing specialist palliative care for adults with intellectual disabilities is an important element of palliative care. Further research is necessary, and education to inform, support and empower specialist palliative care professionals in optimizing palliative and end-of-life care for persons with intellectual disabilities and to inform service development and provision.

Keywords: palliative care, intellectual disabilities, service planning, practice review

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Authors: Novita Verayanti Manalu, Alvin Salim

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Background: Palliative care is caring holistically for patients and families to improve their quality of life. Experts stated that palliative care could be applied not only for terminally ill cases but also for acute illnesses. Therefore, this study wants to find out the level of knowledge about palliative care of the nurses along with the relationship with attitude and performance. Method: This study applies a cross-sectional survey design and allows the respondents to fill two questionnaires to determine the level of knowledge and attitude toward palliative care, while one questionnaire is filled out by the head nurse to evaluate nurses’ performance. The relationship was analyzed by Spearman rho’s correlation in alpha < 0,05 by SPSS. Results: The majority of respondents were females, aged above 25 years old, and married. Most of the nurses are staff nurses and the ratio of education level is not significantly different. The knowledge level is poor, while the attitude and performance are at an adequate level. Knowledge may affect attitude, but it doesn’t happen toward performance. Conclusion: There is a need for increased knowledge about palliative care to improve attitude and work performance. Future researchers might use this finding as a reference to conduct further study in improving knowledge of palliative care.

Keywords: knowledge, attitude, work performance, palliative care

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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: Alex Hughes

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Patients with advanced heart failure develop specific palliative care needs due to the progressive symptom burden and unpredictable disease trajectory. NICE guidance advises that palliative care should be provided to patients with both cancer and non-cancer conditions as and when required. However, there is some way to go before this guidance is consistently and effectively implemented nationwide in conditions such as heart failure. The Ambitions for Palliative and End of Life Care: A national framework for local action in England provides a set of foundations and ambitions which outline a vision for what high-quality palliative and end-of-life care look like in England. This poster aims to critically consider how to improve access to palliative care for heart failure patients in England by analysing the foundations taken from this framework to generate specific recommendations using Soft Systems Methodology (SSM). The eight foundations analysed are: ‘Personalised care planning’, ‘Shared records’, ‘Evidence and information’, ‘Involving, supporting and caring for those important to the dying Person’, ‘Education and training’, ‘24/7 access’, ‘Co-design’ and ‘Leadership.’ A number of specific recommendations have been generated which highlight a need to close the evidence-policy gap and implement policy with sufficient evidence. These recommendations, alongside the creation of an evidence-based national strategy for palliative care and heart failure, should improve access to palliative care for heart failure patients in England. Once implemented, it will be necessary to evaluate the effect of these proposals to understand if access to palliative care for heart failure patients actually improves.

Keywords: access, health systems, heart failure, palliative care

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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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Authors: Eunkyo Kang, Jihye Lee, Jiyeon Choo

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Background: Pediatric palliative care has been increasing, and the number of studies has focused on the age at which pediatric patient can be notified their terminal illness, pediatric advanced care planning (ACP) and palliative care. However, there is a lack of research on health professionals’ perception. Aim: We aimed to investigate the perceptions of healthcare professionals about appropriate age disclosing terminal illness, awareness of ACP, and the relationship between ACP knowledge and the preference for palliative care for children. Methods: We administered nationwide questionnaires to 928 physicians from the 12 hospitals and the Korean Medical Association and 1,241 individuals of the general Korean population. We asked about the age at which the pediatric patients could be notified of their terminal illness, by 4 groups; 4 years old or older, 12 years old or older, 15 years old or older, or not. In addition, we surveyed the questionnaires about the knowledge of ACP of the medical staff, the preference of the pediatric hospice palliative care, aggressive treatment, and life-sustaining treatment preference. Results: In the appropriate age disclosing terminal illness, there were more respondents in the physicians than in the general population who thought that it was possible even at a younger age. Palliative care preference in pediatric patients who were expected to expire within months was higher when health care professionals had knowledge of ACPs compared to those without knowledge. The same results were obtained when deaths were expected within weeks or days. The age of the terminal status notification, the health care professionals who thought to be available at a lower age have a higher preference for palliative care and has less preference for aggressive treatment and life-sustaining treatment. Conclusion: Despite the importance of pediatric palliative care, our study confirmed that there is a difference in the preference of the health care professionals for pediatric palliative care according to the ACP knowledge of the medical staff or the appropriate age disclosing terminal illness. Future research should focus on strategies for inducing changes in perceptions of health care professionals and identifying other obstacles for the pediatric palliative care.

Keywords: pediatric palliative care, disclosing terminal illness, palliative care, advanced care planning

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Authors: Areej Alosimi, Heather Wharrad, Katharine Whittingham

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Palliative care is a crucial element in nursing, especially with the steep increase in non-communicable diseases. Providing education in palliative care can help elevate the standards of care and address the growing need for it. However, palliative care has not been introduced into nursing curricula, specifically in Saudi Arabia, evidenced by students' inadequate understanding of the subject. Digital learning has been identified as a persuasive and effective method to improve education. The study aims to assess the feasibility and accessibility of implementing digital learning in palliative care education in Saudi Arabia by investigating the potential of delivering palliative care nurse education via distance learning. The study will utilize a sequential exploratory mixed-method approach. Phase one will entail identifying needs, developing a web-based program in phase two, and intervention implementation with a pre-post-test in phase three. Semi-structured interviews will be conducted to explore participant perceptions and thoughts regarding the intervention. Data collection will incorporate questionnaires and interviews with nursing students. Data analysis will use SPSS to analyze quantitative measurements and NVivo to analyze qualitative aspects. The study aims to provide insights into the feasibility of implementing digital learning in palliative care education. The results will serve as a foundation to investigate the effectiveness of e-learning interventions in palliative care education among nursing students. This study addresses a crucial gap in palliative care education, especially in nursing curricula, and explores the potential of digital learning to improve education. The results have broad implications for nursing education and the growing need for palliative care globally. The study assesses the feasibility and accessibility of implementing digital learning in palliative care education in Saudi Arabia. The research investigates whether palliative care nurse education can be effectively delivered through distance learning to improve students' understanding of the subject. The study's findings will lay the groundwork for a larger investigation on the efficacy of e-learning interventions in improving palliative care education among nursing students. The study can potentially contribute to the overall advancement of nursing education and the growing need for palliative care.

Keywords: undergraduate nursing students, E-Learning, Palliative care education, Knowledge

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Holistic and patient-centred palliative care and support require an integrated system of care that includes health and social service providers working together to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the benefits and challenges of mobilizing multidisciplinary care teams for health care professionals and social service providers. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed, and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers posed by multidisciplinary care teams. Three main findings emerged: First, the data highlighted the benefits of multidisciplinary care teams for both patient outcomes and quality of life and provider mental health; second, the data showed that the lack of a system-wide integrated communication system reduces the quality of patient care and increases provider stress while working in multidisciplinary care teams; finally, the data demonstrated the existence of implicit hierarchies between disciplines, this coupled with different disciplinary perspectives of palliative care provision can lead to friction and challenges within care teams. These findings will have important implications for the future of palliative care as they will help to facilitate and build stronger person-centred/relationship-centred palliative care practices by naming the challenges faced by multidisciplinary palliative care teams and providing examples of best practices.

Keywords: public health palliative care, palliative care nursing, care networks, integrated health care, palliative care approach, public health, multidisciplinary work, care teams

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Authors: Vildan Cırık, Emine Efe

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Complementary health approaches are growing in popularity worldwide and play a substantial role in health care. It is very important for paediatric nurses to have knowledge of practices affecting the medical conditions of patients and to communicate with them through integrative nursing care. The purpose of this study was to determine paediatric nurses’ knowledge and experiences of complementary health approaches (CHA) and their personal and professional attitudes to the use of complementary health approaches. This multicentre study was conducted with 1450 paediatric nurses in 18 hospitals in Turkey. Paediatric nurses included in the study were working in the following clinics: Paediatric Service, Paediatric Intensive Care, Paediatric Haematology/Oncology. Data collection focused on the paediatric nurses’ knowledge and experiences of CHA. A high proportion of our sample of paediatric nurses reported that they had used some form of CHA themselves; the most popular choices of CHA were prayer, massage, and vitamins techniques. Paediatric nurses reported positive experiences (drawing/music/art/dance therapies, prayer, herbs, thermal springs, massage, and reflexology) and negative experiences (herbs, thermal springs, prayer, and massage). This study may contribute to increased awareness of the potentially important role of paediatric nurses in the delivery of CHA. Paediatric nurses play important roles in helping patients to use complementary health approaches safely and accurately. Trainings on CHA should be organised, data collection forms including CHA should be created, and evidence-based studies should be focused towards improving the clinical practice of paediatric nurses.

Keywords: complementary health approaches, paediatric nurses, knowledge, experience, attitude, Turkey

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Authors: Harriet Nalubega, Eddie Mwebesa

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In Uganda, over 90% of people use herbal remedies. Herbal medicine use has been associated with delayed clinical appointments, presentation with advanced cancers, financial constraints, and misdiagnosis. This study aimed to evaluate the prevalence of herbal medicine use and practices amongst cancer patients receiving Palliative Care at Mobile Hospice Mbarara (MHM) and the associated challenges. This was a mixed-methods prospective study conducted in 2022 at MHM, where patients were interviewed, and a questionnaire was completed. 87% of the patients had used herbal medicine. Of these, 83% were female, and 59% had not received formal education. 27% of patients had used herbal remedies for a year or more. 51% of patients who were consuming herbs stopped using them after starting palliative care treatment. Motivations for herbal medicine use were in the hope for a cure in 59%, for pain relief in 30%, and peer influence in 10%. There is a high prevalence of herbal medicine use in Palliative Care. Female gender and lack of formal education were disproportionately associated with herbal remedy use. Most patients consume herbal remedies in search of a cure or to relieve severe pain. Education of cancer patients about herbal remedy use may improve treatment outcomes in Palliative Care.

Keywords: prevalence, herbal medicine, cancer patients, palliative care

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Authors: Cassey Younghans

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Background: Current health care trends demonstrate that there is an increasing number of patients being hospitalized with complex comorbidities. These complex needs require advanced therapies, and treatment goals often focus on doing everything possible to prolong life rather than focusing on the individual patient’s quality of life which is the goal of palliative care efforts. Patients benefit from palliative care in the early stages of the illness rather than after the disease progressed or the state of acuity has advanced. The clinical problem identified was that palliative care was not being implemented early enough in the disease process with patients who had complex medical conditions and who would benefit from the philosophy and skills of palliative care professionals. Purpose: The purpose of this quality improvement study was to increase the number of palliative care screenings and consults completed on adults after being admitted to one Non-ICU and Non-COVID hospital unit. Methods: A retrospective chart review assessing for possible missed opportunities to introduce palliation was performed for patients with six primary diagnoses, including heart failure, liver failure, end stage renal disease, chronic obstructive pulmonary disease, cerebrovascular accident, and cancer in a population of adults over the ago of 19 on one medical-surgical unit over a three-month period prior to the intervention. An educational session with the nurses on the benefits of palliative care was conducted by the researcher, and a screening tool was implemented. The expected outcome was to have an increase in early palliative care consultation with patients with complex comorbid conditions and a decrease in missed opportunities for the implementation of palliative care. Another retrospective chart review was completed following completion of the three month piloting of the tool. Results: During the retrospective chart review, 46 patients were admitted to the medical-surgical floor with the primary diagnoses identified in the inclusion criteria. Six patients had palliative care consults completed during that time. Twenty-two palliative care screening tools were completed during the intervention period. Of those, 15 of the patients scored a 7 or higher, suggesting that a palliative care consultation was warranted. The final retrospective chart review identified that 4 palliative consults were implemented during that time of the 31 patients who were admitted over the three month time frame. Conclusion: Educating nurses and implementing a palliative care screening upon admission can be of great value in providing early identification of patients who might benefit from palliative care. Recommendations – It is recommended that this screening tool should be used to help identify the patents of whom would benefit from a palliative care consult, and nurses would be able to initiated a palliative care consultation themselves.

Keywords: palliative care, screening, early, palliative care consult

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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: Khalid Al Saleh, Najlaa AlSayed

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Background: Palliative care is changing from just ‘end of life care’ to care delivered earlier in the disease course. Metanalysis showed that Palliative Performance Scale (PPS) is associated with increased length of survival. The Palliative Care Center (PCC) in Kuwait is the only stand-alone center in Eastern Mediterranean Region with a capacity of 92 beds. We compared clinical characteristics between patients referred from the Specialized Cancer Center and general hospitals in Kuwait to PCC. Method: A cross Sectional survey was conducted since the opening of PCC in January 2011 to June 2013. Patients’ data on demographics, type of the cancer, PPS score and referring hospital were collected and analyzed. Results: Total number of the patients was 142. Mean age was 61.05±14.79 years, 66 patients (47.1%) were males and 74 (52.9%) were females. The most common cancers in males were lung (n=18, 27.3%) followed by head and neck cancers (n=8, 12.1%) and brain tumors (n=7, 10.6%) while in females, the most common cancers were breast cancer (n=12, 16.7%) followed by ovarian cancer (n=10, 13.9%) and Cancer Colon (n=8, 11.1%). Patients with PPS score 30% were 27.9% (n=39), 40% in 40.7% (n=57), and 50% in 17.1% (n=24) respectively. Patients referred from the Specialized Cancer Center had significantly higher portion of patients with PPS score > 30% (73.4%, n=94), compared to patients coming from general hospitals (33.3%, n=4), P value= 0.007. Conclusion: There is significant difference in PPS scores between patients referred from the Specialized Cancer Center compared to patients referred from general hospitals. We encourage that all cancer patients should be treated in Specialized Cancer Centers and earlier involvement of Palliative Care Centers to achieve better survival. Training workshops are needed for health care professionals working in general hospitals to raise awareness about earlier referral of patients to palliative care services.

Keywords: palliative care, kuwait, performance scale differences, pps score, specialized hospitals

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Authors: Aditya Manna

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Introduction: As in any developing countries state of West Bengal in India has a huge burden of cancer patients in advanced stage coming from rural area where awareness regarding the usefulness of palliative care in rather poor. Objective: Our goal is to give a pain free good quality of life in these advanced stage cancer patients. Objective of this study is to identify the main difficulties in achieving the above goal in a rural village setting in India. Method: Advanced cancer patients in need of palliative care in various villages in of rural India were selected for this study. Their symptoms and managements in that rural surroundings were evaluated by an NGO (under the guidance of a senior palliative care specialist) working in that area. An attempt was made to identify the main obstacles in getting proper palliative care in a rural setting. Results: Pain, fatigue are the main symptoms effecting these patients. In most patients pain and other symptoms control were grossly inadequate due to lack of properly trained manpower in the rural India. However regular homecare visits by a group of social workers were of immense help in the last few months of life. NGO team was well guided by a palliative care specialist. Conclusion: There is a wide gap of trained manpower in this filled in rural areas of India. Dedicated groups from rural area itself need encouragement and proper training, so that difficult symptoms can be managed locally along with necessary social and psychological support to these patients.

Keywords: palliative care, NGO, rural India, home care

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Authors: Ibragim Issabekov, Byron Crape, Lyazzat Toleubekova

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Background: Palliative care substantially improves the quality of life of terminally-ill patients. Symptom control is one of the keystones in the management of patients in palliative care settings, lowering distress as well as improving the quality of life of patients with end-stage diseases. The most common symptoms causing significant distress for patients are pain, nausea and vomiting, increased respiratory secretions and mental health issues like depression. Aims are: 1. to identify best practices in symptom management in palliative patients in accordance with internationally approved guidelines and compare aforementioned with actual practices in Kazakhstan; to evaluate the criteria for assessing symptoms in terminally-ill patients, 2. to review the availability and utilization of pharmaceutical agents for pain control, management of excessive respiratory secretions, nausea, and vomiting, and delirium and 3. to develop recommendations for the systematic approach to end-of-life symptom management in Kazakhstan. Methods: The use of qualitative research methods together with systematic literature review have been employed to provide a rigorous research process to evaluate current approaches for symptom management of palliative patients in Kazakhstan. Qualitative methods include in-depth semi-structured interviews of the healthcare professionals involved in palliative care provision. Results: Obstacles were found in appropriate provision of palliative care. Inadequate education and training to manage severe symptoms, poorly defined laws and regulations for palliative care provision, and a lack of algorithms and guidelines for care were major barriers in the effective provision of palliative care. Conclusion: Assessment of palliative care in this medium-income transitional-economy country is one of the first steps in the initiation of integration of palliative care into the existing health system. Achieving this requires identifying obstacles and resolving these issues.

Keywords: end-of-life care, middle income country, palliative care, symptom control

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Authors: Michael Joseph Passmore

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Euthanasia, or assisted suicide (EAS), refers to the provision of medical assistance to individuals seeking to end their own lives. In Canada, the issue of EAS has been the subject of debate and legislative action for many years. In 2016, the Canadian government passed the Medical Assistance in Dying (MAID) Act. This legalized EAS in Canada is subject to certain eligibility criteria. In 2023, debate in Canada continues regarding the scope of MAID practice and associated legislation. Dementia is an illness that causes suffering at the end of life. Persons suffering due to dementia deserve timely and effective palliative care.

Keywords: palliative care, neurocognitive disorder, dementia, Alzheimer’s disease, euthanasia, assisted suicide, medical ethics, bioethics

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Authors: C. Treadgold, S. Sivaraman

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The Starlight Children's Foundation (Starlight) is an Australian non-profit organisation that delivers programs, in partnership with health professionals, to support children, adolescents, and their families who are living with a serious illness. While supporting children and adolescents with life-limiting conditions has always been a feature of Starlight's work, providing a dedicated program, specifically targeting and meeting the needs of the paediatric palliative population, is a recent area of focus. Recognising the challenges in providing children’s palliative services, Starlight initiated a research and development project to better understand and meet the needs of this group. The aim was to create a program which enhances the wellbeing of children, adolescents, and their families receiving paediatric palliative care in their community through the provision of on-going, tailored, positive experiences or 'moments'. This paper will present the results of the formative evaluation of this unique program, highlighting the development processes and outcomes of the pilot. The pilot was designed using an innovation methodology, which included a number of research components. There was a strong belief that it needed to be delivered in partnership with a dedicated palliative care team, helping to ensure the best interests of the family were always represented. This resulted in Starlight collaborating with both the Victorian Paediatric Palliative Care Program (VPPCP) at the Royal Children's Hospital, Melbourne, and the Sydney Children's Hospital Network (SCHN) to pilot the 'Moments' program. As experts in 'positive disruption', with a long history of collaborating with health professionals, Starlight was well placed to deliver a program which helps children, adolescents, and their families to experience moments of joy, connection and achieve their own sense of accomplishment. Building on Starlight’s evidence-based approach and experience in creative service delivery, the program aims to use the power of 'positive disruption' to brighten the lives of this group and create important memories. The clinical and Starlight team members collaborate to ensure that the child and family are at the centre of the program. The design of each experience is specific to their needs and ensures the creation of positive memories and family connection. It aims for each moment to enhance quality of life. The partnership with the VPPCP and SCHN has allowed the program to reach families across metropolitan and regional locations. In late 2019 a formative evaluation of the pilot was conducted utilising both quantitative and qualitative methodologies to document both the delivery and outcomes of the program. Central to the evaluation was the interviews conducted with both clinical teams and families in order to gain a comprehensive understanding of the impact of and satisfaction with the program. The findings, which will be shared in this presentation, provide practical insight into the delivery of the program, the key elements for its success with families, and areas which could benefit from additional research and focus. It will use stories and case studies from the pilot to highlight the impact of the program and discuss what opportunities, challenges, and learnings emerged.

Keywords: children, families, memory making, pediatric palliative care, support

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Authors: Jui-Hung Hung, Ching-Liang Hsieh, Yi-Wen Lin

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Modern medicine highly emphasizes the importance of palliative treatment. The inception of palliative and hospice care recently developed into the concept of caring for the patients’ and families’ physical, psychological and spiritual problems. There are several benefits related to palliative care such as reducing medical expenses, decreasing patients’ suffer, and supporting patient go through the finale of the life. Nowadays, in Taiwan, over 60-70% terminal cancer patients were covered in hospice care, and the coverage rate increased annually. Acupuncture is a well-known therapy used more than thousand years to relieve symptoms of cancer patient. Many reports showed that, even in the Western society, many reputable medical centers can provide Acupuncture therapy for patients. Accordingly, using Acupuncture for cancer patient care is a global trend. There are increased evidences indicate that Acupuncture can relieve the symptoms for cancer patients including pain, reduce the dosage of anesthetic, improve the cancer-related fatigue, relieve the chemotherapy-related nausea and vomiting, ease anxiety mood and even improving the quality of life. Furthermore, some trials show that Acupuncture may help relieve xerostomia, hot flash, sleep disorders, and some GI discomfort and so on. Acupuncture therapy has many advantages for clinical use with effective, low-cost, minimal side effect, suitable for cancer patients and even for elderly population. Especially in nowadays, there are more diversified challenges in modern medicine, all of them will make the higher medical budget. We suggest that Acupuncture will be one of methods for palliative care for cancer patients.

Keywords: Acupuncture, cancer, integrative medicine, palliative care

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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: W. L. Tsang, H. Y. Li, S. L. Wong, T. Y. Kwok, S. C. Yuen, S. S. Kwok, P. S. Ko, S. Y. Lau

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Introduction: Palliative care is no doubt necessary in surgery. When one looks at studies of what patients with life-threatening illness want and compares to what they experience in surgical units, the gap is huge. Surgical nurses, being patient advocates, should engage with patients and families sooner rather than later in their illness trajectories to consider how to manage the illness, not just their capacity to survive. Objective: This clinical practice guide aims to fill the service gap of palliative care in surgery by producing a quality-driven, evidence-based yet straightforward clinical practice guide based on a focus strategy. Methodology: In line with Guide to Good Nursing Practice: End-of-Life Care recommended by Nursing Council of Hong Kong and the strategic goal of improving quality of palliative care proposed in HA Strategic Plan 2017-2022, multiple phases of work were undertaken from July 2015 to December 2017. A pragmatic clinical practice guide for surgical patients facing life-threatening conditions was developed based on assessments on knowledge of and attitudes towards end-of-life care of surgical nurses. Key domains, including preparation for bereavement, nursing care for imminently dying patients and at the dying scene were crystallized according to the results of the assessments and the palliative care checklist formulated by UCH Palliative Care Team. After a year of rollout, its content was refined through analyses of implementation in routine practice and consensus opinions from frontline nurses. Results and Outcomes: This clinical practice guide inspires surgical nurses with the art of care to provide for patients’ comfort, function, and longevity. It provides practical directions and assists nurses to master the skills on advance care planning and learn how to be clear with patients, families and themselves about the realities of the disease pictures. Through the implementation, patients and families are included in the decision process, and their wishes are honored. The delivery of explicit and high-quality palliative care maintains good nurse-to-patient relations and enhances satisfaction of hospital care of patients and families. Conclusion: Surgical nursing has always been up to the unique challenges of the era. This clinical practice guide has become an island of credibility for our nurses as they traverse the often stormy waters of life-limiting illness.

Keywords: palliative care delivery, palliative care in surgery, hospice care, end-of-life care

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Authors: Mai Ali

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The abstract underscores the critical importance of junior paediatricians acquiring expertise in handling paediatric emergencies, with a particular focus on Diabetic Ketoacidosis (DKA). Existing literature reveals a wealth of research on healthcare professionals' knowledge regarding DKA, encompassing diverse cultural backgrounds and medical specialties. Consistently, challenges such as the absence of standardized protocols and inadequacies in training emerge as common issues across healthcare centres. This research proposal seeks to conduct a thematic analysis of the proficiency of paediatric trainees in the United Kingdom in managing DKA within various clinical contexts. The primary objective is to assess their level of competence and propose effective strategies to enhance DKA training comprehensively.

Keywords: DKA, knowledge, Junior paediatricians, local protocols

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Comprehensive and compassionate palliative care and support requires an integrated system of care that draws on formal health and social service providers working together with community and informal networks to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the community supports, services, and informal networks that health care professionals and social service providers rely on to allow their patients to die in their homes and communities. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers that arise as health care and social service providers attempt to build networks of care for patients with life limiting illnesses and families. Three main findings emerged: First, the variability that arises due to systemic barriers in accessing and providing care; second, the exceptionally challenging workload that providers are facing as they work to address complex social care needs (housing, disability, food security), along with escalating palliative care needs; and, finally, the lack of structural support that providers and informal care networks receive. Conclusion: These findings will facilitate and build stronger person-centred/relationship-centred principles and practices between providers, patients, community, and informal care networks by highlighting the systemic barriers to accessing and providing person-centred care. Further, they will have important implications for future partnerships in integrated care delivery programs and initiatives, community policies, education programs, and provincial and national palliative care strategies.

Keywords: public health palliative care, palliative care nursing, care networks, informal care, integrated health care

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Authors: Che Zarrina Sa'ari, Sheriza Izwa Zainuddin, Hasimah Chik, Sharifah Basirah Syed Muhsin

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Palliative care is holistic care for patients with serious illnesses and for the family as well by interdisciplinary specialties to optimize quality of life by preventing, treating, and comforting the suffering and struggling. Palliative care is not a curative treatment but a comprehensive care to ensure the well-being of patients. This study was to identify the perceptions of patients and carers on healthcare needs and any factors related to the needs of palliative patients. Validated questionnaires survey of 254 patients and carers were analysed using a Statistical Package for the Social Sciences (SPSS) version 22. The findings were processed with Cronbach Alpha analysis, frequency, and descriptive to compare the important of each element in healthcare. Open-ended responses were analysed using thematic framework approach. The findings proved that all the items in healthcare needs elements were important because the frequency shown higher values, which were physical needs (5.91), mental needs (6.10), spiritual needs (6.34), emotional needs (6.05), social needs (5.88) and logistics needs (5.05). The total score of Cronbach’s alpha (α) for this study is 0.958, which is suggesting very good internal consistency reliability for the elements for healthcare needs. Professionals and healthcare providers need to ensure healthcare planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person.

Keywords: healthcare, need, holistic, palliative, multi speciality

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Authors: Magdalena Hasplova, Katerina Ivanova

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Perinatal palliative care is a relatively young and developing field that includes the care of a fetus or newborn with a life-threatening or limiting defect and his family. However, the training of midwives in perinatal palliative care is insufficient and midwives do not feel prepared for this aspect of their work. This fact can affect the barriers to communication with the mother or family of the endangered child. The main aim was to analyze the awareness of midwifery students on the issue of perinatal palliative care in the Czech Republic. Based on the analysis, draw attention to possible communication barriers that may be caused by insufficient information. The research was carried out using a qualitative method, the method of data collection was a semi-structured interview. Eleven female students took part in the research, and the respondents were selected using the Snowballing method. Some methods of grounded theory (open coding and category creation) were used to analyze the data. Based on the results of the research, questions were set in a questionnaire focused on communication barriers between mothers (family) and health care professionals in the care of newborns with life-threatening or limiting disabilities. Based on the analysis of data, categories 1 were determined. Knowledge of perinatal palliative care 2. Education 3. Practical experience 4. Readiness and concerns in the provision of perinatal palliative care 6. Supervision. The questions in the questionnaire were then derived taking into account the data obtained, and the operationalization of health literacy in the field of perinatal palliative care was performed. The analysis of the interviews revealed that the education of midwives in the Czech Republic in the issue of perinatal palliative care is not uniform. The research confirmed the insufficient knowledge and skills of midwifery students preparing to provide perinatal palliative care. Respondents reported feelings of unpreparedness in the areas of communication with a woman after perinatal loss, psychological support for a woman and her family, the care of a stillborn or dying child, or self-coping with death. The questions in the questionnaire then develop these areas. We assumed that by analyzing and interpreting the data obtained from our research, we will help to better understand the concerns and motivations of students in providing holistic perinatal palliative care. We came to the conclusion that it would be appropriate to set up a unified and comprehensive education on this issue in the Czech Republic. Healthcare professionals are in a unique position that can positively or negatively affect the intensity of perinatal loss. Already properly set up education of health professionals leads to overcoming barriers in communication between health professionals and the family, experiencing perinatal loss.

Keywords: midwife, perinatal loss, perinatal palliative care, communication, barriers, mothers, family

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Authors: Salehah Tahkin, Norlaila Mustafa, Dayang Anita Abdul Aziz

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Knowledge of medical ethics is important to all practitioners so the best care can be delivered to all patients through safe practice. Surgeons are not exceptions to this. Knowledge, attitude, and practice (KAP) of medical ethics among paediatric surgeons and trainees in Malaysia has not been evaluated before. This study aims to determine the level of KAP regarding medical ethics among these groups. This was a cross-sectional study involving three groups of samples, i.e., paediatric surgeons (PS), paediatric surgical trainees (PST), and medical officers with a special interest in paediatric surgery (MO). A validated KAP questionnaire was used. Standard formulas were used to calculate objective indexes for measuring KAP, which were then compared for statistical significance across different sample groups; p less than 0.05 is taken as significant. The index is rated into 5 classes using a score of 0 to 10, i.e., poor (1-2.99), fair (3-4.99), good (5-6.99), very good (7-8.99), and excellent (9-10). There were 117 samples, i.e., PS n=45 (38.5%), PST n=25 (21.3%), and MO n=47 (40.2%). For knowledge, all three groups display a good index score (mean score of 5.44). For attitude, PS and MO also display an index score of good (mean score of 5.81), while the PST index score was fair (4.82). For practice, our study shows a highest score of 7.14 (very good) among PST. However, these differences were not statistically significant (p> 0.05). Conclusion: Training in paediatric surgery must continue to emphasize professionalism and medical ethics education to deliver the best health care services.

Keywords: KAP, medical ethics, paediatric, surgeons, trainees

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Authors: R. Bužgová, R. Kozáková, M. Škutová, M. Bar, P. Ressner, P. Bártová

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Introduction: Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main objective of the project is to create and to verify a concept of neuro-palliative and rehabilitative care for patients with selected neurological diseases in an advanced stage of the disease and also to evaluate bio-psychosocial and spiritual needs of these patients and their caregivers related to the quality of life using created standardized tools. Methodology: Triangulation of research methods (qualitative and quantitative) will be used. A concept of care and assessment tools will be developed by analyzing interviews and focus groups. Qualitative data will be analyzed using grounded theory. The concept of care will be tested in the context of the intervention study. Using quantitative analysis, we will assess the effect of an intervention provided on the saturation of needs, quality of life, and quality of care. A research sample will be made up of the patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington’s disease), together with patients´ family members. Based on the results, educational materials and a certified course for health care professionals will be created. Findings: Based on qualitative data analysis, we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval. Conclusion: Based on the results, educational materials and a certified course for doctors and health care professionals will be created.

Keywords: multidisciplinary approach, neuropalliative care, research, quality of life

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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A preliminary systematic review shows that health professionals experience a tension when communicating with the parents and family members of children with life-threatening and life-limiting conditions. On the one hand, they want to promote open and honest communication, while on the other, they are apprehensive about fostering an unrealistic sense of hope. Defining the boundaries between information that might offer reasonable hope versus that which results in false reassurance is challenging. Some healthcare providers worry that instilling a false sense of hope could motivate parents to seek continued aggressive treatment for their child, which in turn might cause the patient further unnecessary suffering. To date, there has been a lack of research in the Middle East regarding how healthcare providers do or should communicate bad news; in particular, the issue of hope in the field of paediatric palliative care has not been researched thoroughly. This study aims to explore, from the perspective of patients’ mothers, physicians, and nurses, the experience of communicating and receiving bad news in the care of children with palliative care needs. Data were collected using a collective qualitative case study approach across three paediatric units in a Jordanian hospital. Two data collection methods were employed: participant observation and semi-structured interviews. The overall number of cases was 15, with a total of 56 interviews with mothers (n=24), physicians (n=12), and nurses (n=20) completed, as well as 197 observational hours logged. The findings demonstrate that mothers wanted their doctors to provide them with hopeful information about the future progression of their child’s illness. Although some mothers asked their doctors to provide them with honest information regarding the condition of their child, they still considered a sense of hope to be essential for coping with caring for their child. According to mothers, hope was critical to treatment as it helped them to stay committed to the treatment and protected them to some extent from the extreme emotional suffering that would occur if they lost hope. The health professionals agreed with the mothers on the importance of hope, so long as it was congruent with the stage and severity of each patient’s disease. The findings of this study conclude that while parents typically insist on knowing all relevant information when their child is diagnosed with a severe illness, they considered hope to be an essential part of life, and they found it very difficult to handle suffering without any glimmer of it. This study finds that using negative terms has extremely adverse effects on the parents’ emotions. Hence, although the mothers asked the doctors to be as honest as they could, they still wanted the physicians to provide them with a positive message by communicating this information in a sensitive manner including hope.

Keywords: health professionals, children, communication, hope, information, mothers, palliative care

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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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