Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics
Education; Curriculum; Dissemination; Pediatric Palliative Care; post-graduate teaching; Train-the-Trainer
CONTEXT: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. OBJECTIVES: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. METHODS: Funded through a US$1.6 million National Institutes of Health / National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. RESULTS: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach future "Trainers," thus becoming "Master Facilitators". Between 2012-May 2019 a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three PDWs. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. PARTICIPANTS: overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Participants subsequently anticipated improvements in patient care for children with serious illness at their home institutions. CONCLUSION: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Friedrichsdorf S J; Remke S; Hauser J; Foster L; Postier A; Kolste A; Wolfe J
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.008</a>
Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study
dissemination; pediatric oncology; practice; quality of life; research results
Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared.
Bilodeau M; Dussel V; Wolfe J
Pediatric Blood and Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27880" target="_blank" rel="noreferrer noopener">10.1002/pbc.27880</a>