The Initiative for Pediatric Palliative Care: An Interdisciplinary Educational Approach for Healthcare Professionals

doi:10.1016/j.pedn.2005.03.004

Journal of Pediatric Nursing

Volume 20, Issue 5, October 2005, Pages 326-334

https://doi.org/10.1016/j.pedn.2005.03.004 Get rights and content

There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threatening conditions and their families. The confluence of several recent developments has created a critical window of opportunity for improving clinical practice and institutional effectiveness in pediatric palliative care. This article presents an innovative, comprehensive approach to pediatric palliative care education that was developed by the Initiative for Pediatric Palliative Care, a consortium of seven academic children's hospitals, Education Development Center, the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nursing, and the Association of Medical School Pediatric Department Chairs. The approach is based on needs assessment research with clinicians and parents and reflects a commitment to culturally respectful, family-centered care of children with life-threatening conditions. The pedagogy combines principles of adult education, includes families as teachers, and integrates affective and cognitive dimensions to enhance learning.

Section snippets

Values and Goals of the IPPC Curriculum

A number of core values have shaped the development of the curriculum. These values include maintaining a family-centered focus, recognizing that a child's well-being is inextricably linked to the strengths and resources of the family, respecting diversity, avoiding cultural stereotypes and promoting what has been called cultural humility (Tervalon & Murray-Garcia, 1998), and enhancing attention to symptom management, psychosocial needs, spirituality, and the meaning that illness and the threat

IPPC Development Process

The project began with needs assessment research, which included a survey of approximately 800 nurses and physicians who care for seriously ill children in seven geographically diverse children's hospitals (Solomon et al., 2000) and interviews with clinicians and with parents who had experienced the loss of a child (Hardart et al., 2002, Heller & Solomon, 2005) drawn from three of the seven hospitals that participated in the survey. In addition, the principal investigator of the project

IPPC's Educational Philosophy and Pedagogy

The IPPC's educational approach involves a distinctive pedagogy, combining the scientific rigor of its content with attention to the psychosocial needs of a group of adult learners who provide care to highly vulnerable children and families in busy and easily distractible environments. Unlike traditional medical and nursing education, the curriculum focuses not only on the content that professional caregivers must master but also on the psychological, organizational, and logistical barriers

Building Capacity in Pediatric Palliative Care: The Need for Faculty and Leadership Development

On November 6 and 7, 2003, the IPPC held its first national symposium at the New York Academy of Medicine in New York City. The conference was attended by 500 nurses, physicians, social workers, psychologists, chaplains, child life specialists, administrators, and researchers from across the United States, as well as by many international participants. Dr. Richard Behrman, chair of the Institute of Medicine's Committee on Improving Palliative and End-of-Life Care for Children and Their

Acknowledgments

We wish to thank the following funders of the Initiative for Pediatric Palliative Care for their generous support: The Nathan Cummings Foundation, the Open Society Institute's Project on Death in America, the Argosy Foundation, and the Kohlberg Foundation.

In addition to Browning and Solomon, the IPPC investigator team includes the following: Deborah Dokken, MPA, Family Advocate and Consultant, Alan Fleischman, MD, Senior Advisor of the New York Academy of Medicine, Karen S. Heller, PhD,

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Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination
2022, Journal of Pain and Symptom Management
Citation Excerpt :
During TtT conferences, communication skills are taught using different approaches (e.g., role play, trigger tape videos), suggesting hands-on participation and an expanded toolbox likely led EPEC-Pediatrics Trainers to feel more confident in teaching these challenging yet vital PPC topics, with 46% of participants going on to teach Communication and Planning and 51% teaching Preparation for Imminent Death. EPEC-Pediatrics is one of several PPC training programs worldwide13,15–23,40–43 but it is unique in several ways. First, teaching clinicians how to teach PPC effectively is a hallmark of the program.
The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide.
Assessment of past EPEC-Pediatrics participants’ (“Trainers”) self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction.
From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses.
About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions.
EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants’ self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
2020, Anales de Pediatria
La atención al final de la vida de los niños debe ser sensible a las necesidades del niño y de su familia. Necesitamos entender la enfermedad desde la perspectiva de los padres que se enfrentan a la muerte de su hijo, para poder mejorar la calidad y guiar el desarrollo de la atención al final de la vida en Pediatría.
Estudio observacional retrospectivo a través de cuestionario, para evaluar las necesidades, experiencias y satisfacción con la atención recibida, de una muestra de padres que perdieron un hijo por una causa previsible, entre junio de 2014 y junio de 2017. Diferenciamos tres grupos de estudio en función del equipo responsable de la atención al final de la vida, y las diferencias entre el grupo atendido por el equipo de cuidados paliativos pediátricos, el grupo atendido por pediatras no paliativistas y el grupo neonatal, son analizadas.
De las 80 familias elegibles, 64 pudieron ser contactadas y 28 (43,8%) finalmente completaron el cuestionario. Nuestro estudio muestra experiencias positivas y alta satisfacción de los padres con la atención recibida al final de la vida de su hijo. Las puntuaciones más altas tanto en experiencias como en satisfacción, fueron otorgadas por los padres de los niños atendidos por el equipo de cuidados paliativos pediátricos con diferencias estadísticamente significativas en apoyo a la familia, comunicación, toma de decisiones compartida y atención en torno a la muerte (p < 0,05).
Los padres están satisfechos con la atención recibida al final de la vida de sus hijos, pero la intervención de un equipo específico de cuidados paliativos pediátricos mejora la calidad de la atención al final de la vida en pediatría.
The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics.
A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group.
Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05).
Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics.
Educational needs and preferred learning approaches of the paediatric palliative care workforce: A qualitative exploratory study
2020, Nurse Education Today
Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics
2019, Journal of Pain and Symptom Management
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.
Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.
Funded through a U.S. $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.
The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, 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 Professional Development Workshops. 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. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions.
EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
From Fear to Confidence: Changing Providers’ Attitudes About Pediatric Palliative and Hospice Care
2018, Journal of Pain and Symptom Management
Citation Excerpt :
Attitude: Learner will feel confident presenting pediatric hospice to parents, children, and other professionals in a truthful and realistic way. Organizing the modules in this structured format allowed for improved teaching and evaluation and ensured the needs of learners were met, as described by several studies.16,17 The program was taught at existing hospice organizations and tertiary care centers that facilitate hospice referrals with the goal of training interdisciplinary providers to create or strengthen a dedicated pediatric team.
Children have limited access to hospice care: few existing hospice programs have dedicated pediatric teams, and adult hospice providers feel inadequately trained to care for children.
The aim of this study was to increase access to pediatric hospice care by empowering adult hospice providers to care for children through a comprehensive education program. Education empowers providers by changing their attitudes from inadequacy to confidence.
The authors developed a two-day education program to train interdisciplinary teams of adult hospice providers in pediatric care. The curriculum consists of 13 modules to improve participants' knowledge, skills, and attitudes. Ninety-three providers across the U.S. learned via multiple teaching methods including lectures, role plays by professional actors, interviews of bereaved parents, and self-reflections. Learning was evaluated with assessments before, immediately after, and six months after the program. Responses were compared using a one-sided analysis of variation with a significance level of alpha <0.05.
Participants improved their knowledge in 12 of 13 modules. Self-reported confidence levels with pediatric care improved significantly in all 13 modules (P < 0.05). After this program, 79% of providers reported feeling better prepared to care for pediatric hospice patients. Qualitative data reinforced that learners felt more prepared to care for pediatric patients.
A two-day, high-intensity low-cost community-based education program can improve adult providers' knowledge of and skill level with pediatric care, leading to a change in attitude from fear to confidence. This model has the potential to increase access to pediatric hospice care as it uses existing adult hospice infrastructure.
Teaching the Art of Difficult Family Conversations
2017, Journal of Pain and Symptom Management
Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However, traditional teaching methods using didactics and expert role modeling are often inadequate.
The train-the-educator workshop aimed to teach educators how to create and conduct workshops on facilitating difficult family conversations that target their own learners' needs.
This three-hour workshop included instruction on scenario writing and on the use of standardized actors as patients and family members. Workshop leaders presented examples of commonly encountered clinical scenarios where difficult information is discussed. The session used experiential teaching techniques. Outcomes were measured by qualitative discussions and a questionnaire to demonstrate communication skills learned from the sessions.
The workshop was well received by participants who consisted of educators attending the annual meeting of the Pediatric Academic Societies in May 2016. Evaluations revealed that 92% of participants agreed or strongly agreed that the workshop achieved the learning objectives. All participants believed that the workshop increased their knowledge, competency, and skills in teaching and facilitation as an educator, with 86% of participants planning to apply the skills toward curriculum development. The major themes that participants learned centered on facilitation skills as an educator and techniques on how to communicate during challenging family meetings (86% of comments).
This train-the-educator workshop addresses a critical need in both palliative care and general medicine by enhancing the educators' skills in designing and implementing a curriculum on communication skills of health care providers using experiential techniques with formative feedback. The authors hope that by outlining the implementation of this three-hour interactive format, future educators will adapt and use this workshop as it works best for their learners.

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ArticleThe Initiative for Pediatric Palliative Care: An Interdisciplinary Educational Approach for Healthcare Professionals

Section snippets

Values and Goals of the IPPC Curriculum

IPPC Development Process

IPPC's Educational Philosophy and Pedagogy

Building Capacity in Pediatric Palliative Care: The Need for Faculty and Leadership Development

Acknowledgments

Pediatric Clinics of North America

Journal of Pediatric Nursing

Module 4: Responding to suffering and bereavement. (Activity 4: The Experience of the Family During a Child's Illness)

Pediatric ethics: From principles to practice. Monographs in clinical pediatrics

Family perspectives on the quality of pediatric palliative care

Archives of Pediatrics & Adolescent Medicine

Annual summary of vital statistics. Trends in the health of Americans during the 20th century

Pediatrics

A guide to the development of children's palliative care services

Article
The Initiative for Pediatric Palliative Care: An Interdisciplinary Educational Approach for Healthcare Professionals