Day 1 :
- Pediatrics and Children Care, Palliative Care in Oncology, Palliative Care and Chronic Diseases, Palliative Care and End of Life Care, Multidisciplinary Approach to Palliative Care, Palliative Care Nursing, Hospice and Palliative Care
Session Introduction
Godoy-Molina E
Hospital Regional Universitario, Spain
Title: Elaborating care plans for children with complex chronic conditions
Biography:
Elena Godoy finished her University studies in Medicine in 2012 and her Internal Medical Residence in Pediatric in 2017. She currently works at the Pediatric Complex Chronic Conditions and Palliative Care Unit at Hospital Regional Universitario in Málaga, Spain. She is specially interested in Pediatric Complex Chronic Conditions and this work is part of the development of her doctoral thesis, trying to develop instruments that improve the assistance and identification of this kind of patients.
Abstract:
Background and objectives: Pediatric illness has undergone a dramatic epidemiological change with increased survival of children with complex chronic conditions (CCC). Care planning should be an essential part of their assistance, but to elaborate and update personalized care plans is not a simple task and could represent a significant challenge to clinicians. We aimed to develop a platform that facilitates the development of individualized care plans for children with CCC and make it accessible for all healthcare professionals.
Material and Methods: We conducted a scoping review about care planning and care plan development; established needs and objectives for the platform and designed it with the hospital’s informatics team.
Results: The platform was designed over a year and tested for six months. Its final version has the following sections: Background and relevant data (current state/diagnosis, social/psychological aspects, patient’s coordinator and contact details). Specialized care (problems/needs, goals, action plan, alarm signs, patient/family preferences, treatment, follow up). Technology dependency and daily care (filled in by the nursing team whit recommendation for daily care, use of the equipment and maintenance). Personalized care plan (collects all aspects included in the previous sections). Observations (allows multi and inter-professional communication). It can be accessed directly from the child’s medical history and all specialist, including primary care doctors and emergency physicians, can access and edit it.
Conclusions: We designed a platform that allows the development of personalized care plans in a simple and intuitively way. It preserves confidentiality, and all professional involved in the child’s follow-up can access the platform and collaborate in the development of the care plan. That will make it easier to provide the coordinated and integrated care these children need.
Jack Gomberg
Fulbright Association, United States
Title: Saving Costs for Hospitals Through Medical Clowning: A Study of Hospital Staff Perspectives on the Impact of the Medical Clown
Biography:
Jack Gomberg received a Fulbright U.S. Student Program award to Israel from the U.S. Department of State and the J. William Fulbright Foreign Scholarship Board. Gomberg conducted research at Tel Hai College and the Rabin Medical Center as part of a project to study the biopsychological effects of medical clowning therapy on patient outcomes through both qualitative and quantitative methodologies. He also hopes to build a bridge between Israeli and American patient care innovations, and currently works in the Psychneuroimmunology Center at UCLA.
Abstract:
This study explores the perspectives of doctors, nurses, and technicians on the medical clown. A total of 35 subjects were interviewed one on one. Interviews were transcribed and analyzed for common themes. Medical staff outlined novel limitations and views of future directions for the field of medical clowning. Most importantly, many previously unpublished benefits of medical clowns were described. These reported benefits included cost-saving measures for the hospital, increases in staff efficiency, better patient outcomes, and lower stress in medical staff. Given that most of the limitations on medical clowning are financial in nature, these findings have substantial implications for the future of the field. As medical clowning continues to grow, this study outlines the potential for various future research projects within this field of study.
Jacqueline Yammine
Cleveland Clinic Abu Dhabi, United Arab Emirates
Title: Factors Related to Palliative Care Implementation among Multinational Nurses in a Tertiary care Hospital the United Arab Emirates
Biography:
Jacqueline Yammine, MN, RN, is the Senior Manager for the Case Management Department and the Program Manager for Patient and Family Education (PFE) Program at Cleveland Clinic Abu Dhabi (CCAD) in the United Arab Emirates (UAE). Mrs. Yammine was the first case manager joining pre-operational CCAD in August 2014. Between 2005 and 2014, Mrs. Yammine was a Case Manager in a community health services center in the city of Montreal, Quebec, Canada. Between the years 2000-2004, she worked in UAE in Jazzirah and Mafraq Hospital. Mrs. Yammine is a candidate for the Doctor of Nursing Practice at Case Western Reserve University with an expected graduation date of December 2019. She earned her BSN in 2000 from the American University of Beirut (Beirut, Lebanon) and a MN in 2012 from Athabasca University (Alberta, Canada).
Abstract:
Worldwide, the need for palliative care is rapidly increasing due to an ageing population and increases in life limiting diseases. Palliative care is underdeveloped in most of the world, especially in developing countries in the Middle East and Asia. Although United Arab Emirates (UAE) is an oil-rich country that has the economic potential to provide the state of the art health care to its population, it has underdeveloped palliative care due to minimal provision and integration within the health care system. It is in its infantile phase, hampered by out-of-date laws on resuscitation, misplaced fears over opiate addiction, inadequate palliative care education and training to the medical professionals, lack of supporting policies, unstandardized care practices, and other factors.
Nurses play an integral part in the delivery of palliative care to their patients and families. There are multiple factors influencing the effectiveness of the nurse’s role in the successful delivery of palliative care. Given the context of the cultural background of both the international population of nurses working in the UAE; it is crucial to assess the factors associated with the delivery of palliative care in the population of nurses working in CCAD. Understanding the factors will facilitate planning for appropriate training programs and system changes in palliative care delivery.
Purpose: To perform a pre-implementation data collection to understand nursing knowledge, attitude, subjective norms, and perceived behaviors to help inform a successful implementation plan of palliative care services in a tertiary care hospital in the UAE.
Method: An online questionnaire which captured the nurses’ demographic information, knowledge of palliative care through the Palliative Care Quiz for Nurses (PCQN) survey, the nurses’ attitudes toward caring for terminally ill individuals using the Frommelt Attitude toward Care of the Dying (FATCOD) tool, and other questions to capture the beliefs and behaviours towards palliative care was completed by 214 multinational nurses working in a tertiary care hospital in the UAE.
Results: The vast majority of the studied sample had poor knowledge of palliative care, with the highest PCQN scores for nurses from South East Asia (58.36/100). All nurses (n=214) regardless of the continent of origin had a favourable attitude towards palliative care. Multiple regression tests being finalized.
Conclusion: Under process with anticipated completion date end of October
Katrina Leonard
University of Colorado, United States
Title: Providing End-of-Life Care to Children: A Needs Assessment of Hospice Nurses
Biography:
Katie is a palliative care registered nurse with a Bachelor of Science in Nursing from Samuel Merritt University and a Master of Science in Palliative Care (MSPC) from the University of Colorado, Anschutz Medical Campus. She has experience working in pediatric oncology, pediatric neurology, and pediatric palliative care as well as home care. It is her professional mission to be a leader in the development and expansion of pediatric palliative and hospice care and to provide comfort, space, and support and to relieve suffering for children with chronic and life-limiting conditions and their families.
Abstract:
Children have unique end-of-life (EOL) needs, and it is difficult to find pediatric-specific hospice support. Adult hospice nurses often feel uncomfortable and have limited knowledge about pediatric EOL care. Literature supports the need for home-based EOL care for children and for nurses to receive pediatric EOL education, specifically regarding facilitating discussions, communication, pain and symptom management, and managing personal grief. The purpose of this needs assessment is to evaluate hospice nurses’ perceived comfort level and knowledge regarding caring for dying children. An online survey was sent to 70 hospices in the San Francisco Bay Area. Survey questions focused on comfort level, knowledge, and desire for further education on pediatric palliative and EOL care. Findings: Sixty-five nurses completed the survey. There is an even distribution between nurses who strongly agree/agree and those who disagree/strongly disagree that they are knowledgeable about pain assessment in nonverbal/infants and pediatric symptom management, and comfortable with managing pediatric pain, administering pediatric EOL medications, and providing EOL care. At least 80% of nurses believed they were skilled in communication, identifying EOL changes, and managing self-care. A slight majority (60-66%) were knowledgeable about pain assessment in verbal children, comfortable facilitating discussions, and comfortable coping with personal grief. Twenty-one nurses (41%) were knowledgeable about nonpharmacological interventions based on development. Fifty-seven nurses (88%) would like more education. While survey results are mixed regarding knowledge and comfort with caring for dying children, hospice nurses, overall, would value further pediatric-specific education. It is critical that pediatric palliative and EOL care be expanded.
Miri Cohen
University Haifa, Israel
Title: The Role of Sense of Place in Meaning-Making, Meaning-Made and Quality of Life among Cancer Patients at the End of Life
Biography:
She is the professor at University Haifa, Israel
Abstract:
Objective: To expand the existing understanding of meaning in life (meaning-made) and search for meaning (meaning-making) processes, in relation to quality of life among cancer patients near the end of life receiving care either in a home-hospice or hospital setting.
Method: This was a mixed-method study that combined quantitative and qualitative methodologies. Participants were cancer patients near the end of life being treated in either a home hospice or hospital setting. A total of 150 patients completed questionnaires, and an additional 20 patients underwent in-depth interviews.
Findings: The participants treated in home-hospice and hospital settings reported moderate-to-high levels of meaning-made and quality of life, but low levels of meaning making, regardless of setting, nationality or extent of religiosity. Treatment setting was found to not be directly associated with the patients’ meaning and quality of life. Controlling for background variables, meaning-made and meaning-making were associated with quality of life. In addition, meaning-made mediated the associations between treatment setting and quality of life. The content analysis of the in-depth interviews expanded these findings by identifying various sources of meaning at the end of life and their relations to place of treatment.
Conclusions: The study revealed the complexity of the relationship between patients and treatment setting. This study is one of the first to examine meaning in life in the context of treatment setting, thus expanding the current understanding of the impact of treatment setting at the end of life.
Sarah Qasim
Sheffield Teaching Hospitals NHS Trust, United Kingdom
Title: An Evaluation of Quality in End of Life Care within Oncology at LTHT
Biography:
She is the member of Sheffield Teaching Hospitals NHS Trust, United Kingdom
Abstract:
Background: The end of life care (EOLC) quality standard from the National Institute for Health and Care Excellence (NICE) [QS13] emphasises the importance of timely identification and holistic assessment of those approaching the end of life.[1] Furthermore, the Leadership Alliance for the Care of Dying People has recommended ‘personalised palliative care plans’ for patients with progressive, life-limiting illness .[2] Recently, a screening question concerning EOLC has been introduced within the Mortality Review Screening Tool in the Leeds Teaching Hospitals NHS Trust (LTHT), which may provide an indicator for quality of EOLC but has not been evaluated.
Aims: This audit aims to assess the quality of care of Oncology patients who have died within LTHT, to establish whether the current screening tool is fit for purpose and promote local quality improvement. The standards used are six priorities of care identified by LTHT.
Method: Retrospective data was collected from case notes using an audit toolkit (provided by LTHT) from ten patients (n = 10) within the specialty of Oncology, who had died as inpatients between October and November 2018.
Results: All ten patients were known to have advanced progressive disease and the Oncology team recognised risk of dying or when death was imminent in all cases. In nine out of ten cases DNACPR had been discussed directly with the patient. All patients had documented escalation plans by a senior physician in the medical notes. Nursing teams were better than medical staff at documenting psychosocial and hydration needs.
Conclusions: Specific tutorials or e-learning modules for medical staff may help to refresh understanding of the important issues surrounding end-of-life care. Emphasis on medical staff completing a full initial assessment of EOLC needs and wishes, prior to commencing palliation, is recommended. Finally, re-audit will be necessary to assess whether the current standards are being met.
Shelby Hume
University of South Hertfordshire, UK
Title: Bridging the chasm in palliative care: On uses of literature as language and language as literature
Biography:
Shelby Hume has a PhD from the University of Northeastern Australia, an MSc from St. Bartholomew's University, and a BSc from the. University of Lower Hutt.
Abstract:
A widely recognised problem in palliative care is maintaining the engagement of the patient with meaningful activities which can provide a counterpoint to the anxiety many in this position experience. One frequently used strategy is to encourage engagement with literature. Linguistics and literature have long been at the heart of the human condition but are regrettably two domains which often are divided in research. In this paper I will argue that the study of linguistics and the study of literature are two sides of the same coin and should be regarded as such. Evidence will be drawn from sources as diverse as the works of William Shakespeare and recent issues of the New York Times, in order to point to the fundamental points of contact and synergy, as well as bifurcation and divergence, in works of literary and non-fictional natures. The findings to be presented in this paper are the outcome of a diachronic study of generic specificity. Implications for end-of-life care will be discussed.
Yacob Mathai
Marma Heatth Centre, India
Title: The pyrexia temperature never damage the cells of brain or harm the body
Biography:
A practicing physician in the field of healthcare in the state of Kerala in India for the last 30 years and very much interested in basic research. My interest is spread across the fever , inflammation and back pain,. I am a writer. I already printed and published nine books in these subjects. I wrote hundreds of articles in various magazines.
Abstract:
All treatments for fever are based on the belief that fits is the result of 41 degree Celsius temperature and it damages cells of brain and body. At the same time there is no evidence based tests or concrete diagnosing methods to the belief that fits and brain damage is the result of pyrexia.
Necessary ingredients to destroy brain cells and fits cannot be seen in fever.In pyrexia or absence of fever a fainted patient fell on the floor with unconscious state and destroy cells of brain, and necessary ingredients to become conscious are same.
When disease increases essential blood circulation and energy level also decreases. The vertical height between heart and brain is more than one feet. When the disease becomes severe, ability to pump the blood to the brain decreases. As a result of this brain cells are damaged. so the patient might be paralyzed or may even die.
In pyrexia or absence of fever, when blood flow to the brain decreases and fits are formed. There is no other way than this to increase blood circulation to the brain.It is a sensible and discreet action of brain to protect the life or organ.
Recovery from Fits.
The patient become conscious before the time to get decreasing the temperature of fever. When the fainted patient lie on the floor, the vertical height between heart and brain is decreased, blood circulation increased to brain.
Self checking methods.
When the fainted patient lie on the floor,The patient can stand straight and lie on bed alternatively.Then the patient can experience himself the intensity of blood circulation.T he patient can experience when he stand his blood circulation decreases and when lie on the bed the blood circulation decreases.Besides that he can also experience increased blood circulation when lie on the bed raise the foot higher than head.
Zobaida Khatun
Bangabandhu Sheikh Mujib Medical University, Bangladesh
Title: Translation, Cross - Cultural Adaptation and Validation of English “Mishel Uncertainty Illness Scale – Adult Form†into Bengali
Biography:
Zobaida Khatun has completed MS in Nursing from National Institute of Advanced Nursing Education and Research (NIANER), Dhaka, Bangladesh in 2018. In 2010, she has passed CGFNS. She has been working as a clinical nurse in Bangabandhu Sheikh Mujib Medical University (BSMMU) for about 13 years. She has been working in Centre for Palliative Care from 2012 to till date. Research is her passion, profession and fascination. She has completed Masters thesis on “Fatigue and Job Performance Among Nurses at Tertiary level Hospitals in Dhaka City”. She has recently completed a research entitle “Translation, Cross - Cultural Adaptation and Validation of English “Mishel Uncertainty Illness Scale – Adult Form” into Bengali” from BSMMU grant and submitted manuscript at BSMMU journal. She is a younger researcher. She has intention to do more and more research specially on palliative patients in future. This is first time, she is submitting abstract outside of Bangladesh.
Abstract:
Uncertainty in illness among patients with cancer impacts on their psychological adjustment, quality of life and disease outcome. Uncertainty in illness is defined as the inability to define the meaning of illness-related events. The present study aimed to translate and validate the English version of the “Mishel Uncertainty Illness Scale – Adult Form” into Bangla. Validation of the Bangla version of MUIS-A form was performed in Bangladesh on 165 cancer patients attending tertiary hospital in Dhaka, Bangladesh. The scale was translated into Bangla and back translated into English .We established validity and internal consistency reliability of the Bangla version. Data were analyzed using SPSS version 20.
Mean of the MUIS –A was 100. The content validity score was 0.06. The reliability coefficient for 32 items was 0.738 after eliminating some items. α = 0.263 – 0.701 for its four factors. The consistency of the instrument with three weeks interval was t =.745. The Bangla version of uncertainty in illness scale had a good validity and reliability and was useful in assessing illness uncertainty in patients with cancer in Bangladesh. Nurses use the scale to promote patient care and improve their knowledge by using this scale.