The Institute of Medicine and the National Cancer Policy Board have called for the integration of palliative care for all patients with cancer and other life-limiting diseases. In response, a number of programs have developed palliative care education, including the Education in Palliative and End-of-Life Care (EPEC) Project. And yet, in the U.S., the vast majority of infants, children, and teenagers with advanced illnesses who are near the end of life do not have access to interdisciplinary pediatric palliative care (PPC) services either in their community or at the nearest children's hospital. In response to this deficiency, the aim of this Cancer Education Grant project is to, through a collaborative process, establish an Education in Palliative and End-of-life Care-Pediatrics (EPEC-Pediatrics) Train-the-Trainer Curriculum. With knowledge gained through the EPEC-Pediatrics curriculum, physicians and Advanced Nurse Practitioners (APRN) will become """"""""Trainers"""""""" who will educate local interdisciplinary teams that provide care to children with cancer and hematological conditions, thus optimizing PPC outreach within the pediatric hematology/oncology context. The hypothesis is that a positive change will occur in EPEC-Pediatrics trained providers'attitudes and knowledge and selected skills following completion of the training program. Program development will be accomplished through the formation of an Advisory Group of experts, educators, clinicians, and bereaved parents with demonstrated experience in PPC, teaching and research, as well as a Writing Group to facilitate curriculum development. Program evaluation will entail measurement of the number of people trained and their improvement in attitudes, knowledge, and selected skills. One practice indicator, the use of routine symptom assessment, will also be estimated. The project team will work in partnership with leading pediatric associations, including, but not limited to, the American Association for Hospice and Palliative Medicine (AAHPM), the American Academy of Pediatrics (AAP), the National Hospice and Palliative Care Organization (NHPCO), and the American Society of Pediatric Hematology/Oncology (ASPHO). EPEC-Pediatrics aims to be self-sustaining beyond the initial grant period and has the strong potential to have a long-term impact on easing pain and distress of children with advanced cancer and their families in the United States.
The Education in Palliative and End-of-life Care-Pediatrics Train-the-Trainer Curriculum and Dissemination Project (EPEC-Pediatrics) aims to improve access to, and quality of, comprehensive pediatric palliative care for children with advanced cancer and other life-threatening conditions. The program will accomplish this goal through collaboration of experts and organizations in the field of pediatric palliative care and hematology/oncology, who will develop a pediatric educational training curriculum for physicians and nurse practitioners, and also train them for successful implementation of the curriculum with interdisciplinary staff in their own health care communities. By training health care providers to become trainers themselves, EPEC-Pediatrics has high potential for far-reaching and long-term impact to reduce pain and suffering in children with cancer and their families across the US.
|Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne et al. (2016) Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer. BMC Palliat Care 15:12|