Pediatric Palliative Care Training Research Articles

Assessment of knowledge, attitude and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines.

e21536 Background: Palliative care (PC) aims to prevent, relieve and manage the symptoms of cancer and the adverse effects of cancer treatment; however, lack of education is among the biggest challenges facing PC in Philippines. Education and Awareness are dismal, especially in Southern Philippines. This study aimed to assess the level of knowledge, attitude, and practice of Health Care Provider towards pediatric PC. And to discover associated factors that limits the pediatric oncology patients to receive PC and identify the barriers in providing PC by the cancer centers to the pediatric oncology patients. Methods: A cross-sectional study design, conducted at tertiary care hospital that offers PC to pediatric oncology patients at Southern Philippines. Structured questionnaire was circulated to identify the barriers of PC, and assess the Knowledge, Attitude and Practices (KAP) of health care provider using a systematic random sampling method. The data was entered, cleaned and analyzed using excel and SPSS version 19.0 software. The chisquare test was employed to assess the association between variables. A p-value of less than 0.05 was considered as statistically significant. Results: From the total of 508 health care providers selected, a response rate of 500 (98.4%) were registered. Among the respondents 287(57.4%) had good knowledge and 259 (58.1%) had favorable attitude towards pediatric PC. In contrast, the level of practice showed that the majority 384 (76.8%) of health care providers had poor practice towards PC. Results showed that 94% to 99% of health care providers believed that the inadequate research evidence base to guide and measure the quality of life and lack of staff training in pediatric PC were the major barriers in providing PC by the cancer centers to the pediatric oncology patients. And 100% health care providers affirmed that the ignorance and lack of awareness about the existing program and resources of PC were the major factors that limits the pediatric oncology patients to receive pediatric PC in Southern Philippines. Conclusions: The health care providers had poor training and knowledge aspect of practice, but their attitude towards PC was favorable. Recommendations are the needs to be incorporated in the Department of Health through Continuing Professional Development to promote regular training for PC. Also, Educational awareness to assist healthcare professionals and pediatric oncology patients involved in PC needs to be regulated and provide.

The Lack of Systematic Training for Health Care Providers, A Challenge for Providing Pediatric Palliative Home Care: A Comparative Study

Background: The growing prevalence of chronic diseases in children has increased their need for palliative care. We aimed to compare pediatric palliative care and home care training in Iran and in the selected countries. Materials and Methods: This comparative study was conducted based on the classifications of palliative care for children and using databases such as Scopus, Science Direct, Ovid, ProQuest and Medline, websites affiliated with communities and associated with palliative care and home care services and according to the framework of World Health Organization’s Public Health Road Map. The selected countries consist of England, Canada, Australia and South Africa, where home care services are provided for children in addition to palliative care. Results There is a pediatric palliative care training program for doctors in the selected countries. Home care is part of these programs in these countries. Despite the lack of an independent nursing course in postgraduate education in England, Canada, and Australia, community health nurses are responsible for providing care responsible to provide care for children with life-threatening diseases in the community and at home. In South Africa, a home-based palliative care training and support package for children was designed for community care workers. In Iran, pediatric palliative care is in the early stages and home care is evolving as a need. Conclusion Education is the most important factor for integrating home care and pediatric palliative care into the health system. In countries with advanced pediatric palliative care, the knowledge and skills of care providers have been considered. In Iran, revising medical and nursing curriculums and the integration of palliative care and home care programs into the curriculum are essential.

Pediatric palliative care nursing.

Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.

Training in pediatric palliative care in Italy: still much to do.

This survey investigated the availability of training programs in pediatric palliative care (PPC) for Italian postgraduates specializing in pediatric medicine. Two questionnaires were developed: (i) a questionnaire addressed to the Directors of Italian postgraduate pediatric medicine programs (n = 37); and (ii) a survey to the postgraduate students in pediatric medicine at the University Hospitals of Padua and Udine (n = 127). 14 directors participated (response rate: 37.8%). In 85.7% of cases (n = 12), lectures on PPC were offered, for a supposed maximum of 90 minutes/year. 116 students responded (response rate: 91%): they stated that, approximately 40 min/year of training on PPC was provided. In total, 37% of responders stated they attended a PPC Service during their training. The majority of responders (68.1%, n = 79) did not feel ready to care for a pediatric patient with life-limiting disease. Although PPC is well-recognized as part of a pediatrician's training, it receives poor attention.

Experiencias de los padres con niños con cáncer en cuidados paliativos pediátricos: una metasíntesis

Background and aim: Worldwide, childhood cancer is one of the leading causes of death during childhood. Although many childhood malignancies can be cured, a high percentage of these children will end up dying of cancer. Most children who die from cancer undergo a previous end-of-life stage, which will require pediatric palliative care (PPC). Globally, there is great heterogeneity in the provision and dispensation of PPC. It is thus important to know the experiences and preferences of these children and their families in order to guarantee excellent care throughout this stage of their lives. We planned to achieve the following aims: to describe the experiences and recommendations of parents with terminally ill children receiving PPC; to identify the aspects that favor or hinder the establishment of a therapeutic relationship between health care professionals and children and their families; to investigate the role of parents throughout this period, and to analyze the role of the healthcare professionals involved, especially the nurses. Material and methods: We undertook a qualitative metasynthesis of 16 scientific articles identified following a systematic review of the literature in the following databases: PubMed, Science Direct, and Web of Science. Results: A qualitative analysis of the primary sources was carried out by grouping the information into the following categories: 1) what the healthcare team can or should do; 2) family: a care giving and care demanding unit; 3) communication as a key part of the relationship; 4) fighting the disease through knowledge; 5) the child as the focus of care; and 6) death is only the beginning. Conclusions: This article brings to light the importance of establishing a trust relationship between the members of the PPC team and these children and their families. Maintaining an empathic attitude, involving the parents in their children’s care, and keeping an open, fluid communication between healthcare professionals and parents are essential to improve quality of care. In addition, it is necessary to provide all health professionals involved in the care of these children and their families with specialized training in PPC. There is a lack of studies being led or undertaken by nurses in this area, as well as a lack of attention to the role and responsibilities of these professionals during end-of-life care for these children and their families.

Nurses’ Experiences of Spiritual Communication with Seriously Ill Children (S716)

•Understand the spiritual communication needs of seriously ill children.•Describe at least one topic of spiritual communication with ill children.•Describe at least one communication strategy for communication with ill children. Spiritual care is essential in pediatric palliative care and nurses have been identified as the key team member with whom parents and children most often communicate. Yet, spiritual communication remains one of the most difficult areas of communication for nurses. The purpose of this presentation is to describe spiritual communication with seriously-ill children to inform communication training in pediatric palliative care. Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions. Stories were collected from nurses attending End-of-Life Nursing Education (ELNEC) courses. Qualitative responses were transcribed and inductively analyzed using an iterative process of theme analysis. Nurses’ spiritual conversations with children revealed that children question God and the reason for their illness, have a desire to talk about the afterlife as a way of understanding their limited lifespan, and to share descriptions of an afterlife, in these cases described as heaven. Nurses conveyed the importance of being present and engaging in spiritual communication with children. Nurses believed that ill children had spiritual needs and that it was important to nourish the child’s spirit by being with them and acknowledging their experiences. Nurses also emphasized being present for and with the children and their families and available to pray with them. Finally, nurses highlighted that they themselves had to be spiritually available. This presentation will emphasize the importance of being present and engaging in spiritual communication with children.

Effectiveness of Pediatric Palliative Care Education on Pediatric Clinicians.

A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest-posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families. Results showed a significant main effect of training on confidence levels ( p < .000). This suggests that education can effectively boost pediatric clinicians' confidence regarding providing pediatric palliative care and therefore should regularly be provided to clinicians.

Pediatric Palliative Care Training in Fellowship: A National Survey of Adult Palliative Medicine Fellowship Directors and Pediatric Rotation Directors (S731)

•Outline the current state of education and clinical training of adult hospice and palliative medicine (HPM) fellows in pediatric palliative care (PPC).•Compare responses between adult HPM fellowship and pediatric rotation directors regarding the future of PPC education and training. With only seven pediatric palliative care (PPC) programs in the country, there is a lack of PPC physicians. Large numbers of pediatric patients are cared for by palliative physicians trained in adult fellowships. Adult HPM fellowships require pediatric training, but little is known about what is taught and what educators’ thoughts are about this training. To describe adult HPM fellows’ clinical and educational exposure to PPC. An electronic survey was sent to adult HPM fellowship directors and their respective pediatric rotation directors. The survey elicited information about PPC learning objectives, didactics, and fellows’ PPC clinical experience. Finally, directors’ attitudes about the current and future state of PPC training was surveyed. Data was de-identified, and descriptive statistics, Chi-square, and sample t tests were analyzed. 41 of 98 adult HPM fellowship directors and 36 of 80 pediatric rotation directors responded (response rates 42% and 45%, respectively). Most programs indicated their fellows spend time observing PPC teams manage symptom and communication issues rather than independently managing patients with supervision. For example, only 9 of 36 programs allowed adult fellows to independently convert opioids with supervision. Fellowship and pediatric rotation directors felt somewhat (46%) or very (17%) uncomfortable with adult HPM fellows practicing PPC. Fellowship and pediatric rotation directors disagreed about whether they would be likely to develop a pediatric track within their programs (p=0.04). Most adult HPM fellows are observing PPC teams rather than learning to independently manage patients. Both groups of respondents indicated discomfort with adult HPM fellows practicing PPC.

Soins palliatifs pédiatriques : connaissances, expérience clinique et formation des internes de pédiatrie français. Résultats d’une enquête nationale

The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the organization of the medical curriculum in France is currently being revised. This study presents a national survey of pediatric residents, using a computerized anonymous questionnaire. Four different areas were studied: epidemiological data, theoretical and practical knowledge, education, and clinical experience in PPC. The response rate was 39% (n=365/927). Whatever their age or regional location, 25% of residents did not know any details of the French law concerning patients' rights and the end of life. Experience with PPC starts very early since 77% of the first-year pediatric residents experienced at least one child in a palliative care and/or end-of-life situation. During their entire residency, 87% of the residents had experience with PPC and nearly all (96%) end-of-life care. Furthermore, 76% had participated in announcing palliative care (cancer, ICU, etc.) or a serious illness, and 45% had met and discussed with bereaved parents. Furthermore, while 97% of the pediatric residents received training in adult palliative care, mainly before their residency, only 60% received specific PPC training. Ninety-six percent of all French pediatric residents encountered a PPC situation during their residency. That 77% of them had experienced PPC during their first year of residency shows the importance of early training in PPC for pediatric residents. Furthermore, this study points out that there is a significant lack in PPC training since 40% of all residents in the study received no specific PPC training. Progress in education remains insufficient in the dissemination of knowledge on the legal framework and concepts of palliative medicine: while the medical curriculum is being revised, we suggest that training in medical ethics and PPC should be introduced very early and systematically.

Pediatric Palliative Care in Europe Expands

In late September, the first independently owned pediatric palliative – hospice care facility in Ireland opened. Mary McAleese, president of Ireland, spoke at the official opening, and the € 6.5 million spent erecting and fitting the facility was raised entirely through private donations. The Sunshine Home and the Lauralynn Hospice Foundation coordinated fundraising and will continue to raise funds to sustain the service. Ireland is not alone in facing pediatric palliative – hospice care funding challenges. Despite a long European tradition of government-funded National Health Service, few freestanding pediatric palliative – hospice care facilities receive suffi cient, if any, federal funding and must rely on charitable contributions from the corporate and private sectors. However, cost is only one hurdle. Pediatric palliative care training modules for medical specialists and nursing staff have traditionally been scarce. But a slate of new educational initiatives and models of care are emerging across Europe. Three models in particular have taken hold: in-hospital pediatric palliative services, freestanding facilities, and in-home community support services.

The FOOTPRINTS model of pediatric palliative care.

Little is known about the optimal context in which to provide care for the more than 53,000 children who die each year in the United States. Poor training in pediatric palliative care contributes to care that is often fragmented and may neglect the physical, psychosocial, and spiritual needs of the child and family. Pediatric hospice care is frequently not available or not chosen by the family or health care providers. In response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services, we developed FOOTPRINTS, an innovative program of advanced care planning and care coordination. A continuity physician directs the treatment plan regardless of site of care. Staff members coordinate follow up and communication among hospital and community-based care providers. Spiritual support continues through bereavement. Education in the hospital and community supports provision of excellent palliative care by current providers. Satisfaction with this model of care has been high. More than 90% of health care providers and families perceived that the child and family needs as well as the health care provider needs were met by the advanced care planning process and written care plan. All continuity providers would refer another patient. The FOOTPRINTS program promotes quality of care and family and health care provider satisfaction with care. It has been developed to serve as a "best practice" model for care at life's end.