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IPPC FAQ

What is The Initiative for Pediatric Palliative Care (IPPC)?
Why is it important to focus on pediatric palliative care?
What organizations have partnered to sponsor this initiative?
Who funded the initiative?
What children's hospitals have been involved so far?
What are IPPC's major goals?
How does IPPC maintain a family-centered focus?
What is distinctive about the IPPC curriculum?
What are the component parts of the IPPC curriculum?
Has IPPC sponsored any conferences for health care professionals?
Does IPPC have any tools available to assist quality improvement efforts?
How can I gain access to the curriculum materials? Are there any restrictions on their use?
How can I get copies of IPPC DVDs?
How can I get involved?

What is The Initiative for Pediatric Palliative Care (IPPC)?

IPPC is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC is a collaborative effort among several partnering organizations and a number of leading children's hospitals. IPPC staff and co-investigators provided technical assistance to these hospitals, as they developed innovative programs and services in pediatric palliative care. These seven institutions also pilot tested IPPC's comprehensive, interdisciplinary curriculum which addresses knowledge, attitudes and skills that health care professionals need to better serve children and families.

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Why is it important to focus on pediatric palliative care?

While there is an ongoing national effort to improve palliative care for adults, very little has been done so far for children. There is ample evidence that too many children, whether terminally ill or not, suffer needlessly from unrelieved pain and other symptoms, that families are stressed without adequate supports, and that health care professional education has not adequately addressed the knowledge, attitude and skills that clinicians need to meet child and family physical and psychosocial needs.

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What organizations have partnered to sponsor this initiative?

Education Development Center, Inc. (EDC), an international non-profit educational research organization based in Waltham, Massachusetts was the lead organization, working in close collaboration with the National Association of Children's Hospitals and Related Institutions (NACHRI), the Society of Pediatric Nurses (SPN), the Association of Medical School Pediatric Department Chairs (AMSPDC), and the New York Academy of Medicine (NYAM).

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Who funded the initiative?

IPPC benefited from a growing consortium of funders. Past funders include: Aetna, The Schwartz Foundation, The Nathan Cummings Foundation; The Open Society Institute's Project on Death in America; The Argosy Foundation; and an anonymous family foundation.

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What children's hospitals have been involved so far?

Hospitals involved with IPPC in pilot testing and/or quality improvement projects include: Children's Hospital of Boston / Dana-Farber Cancer Institute, Boston, MA; Children's Hospital of Philadelphia, PA; Children's Mercy Hospital and Clinics, Kansas City, MO; Johns Hopkins Children's Center, Baltimore, MD; Lucile Packard Children's Hospital, Stanford University Medical Center, Palo Alto, CA; University of California, San Francisco Children's Hospital; and Vanderbilt University Children's Hospital, Nashville, TN.

In January 2004, IPPC entered its curriculum dissemination phase, with the goal of supporting the implementation of the IPPC curriculum in all children's hospitals and pediatric units of general hospitals in the United States. In addition, interested home care/hospice programs serving children and families will utilize the IPPC curriculum.

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What are IPPC's major goals?

The initiative seeks to enhance the capacity of children's hospitals to:

  • maximize family involvement in decision making and care planning to the levels and in ways which each individual family finds comfortable;
  • inform and involve children with life-threatening conditions in decisions about their care and care planning as fully as possible, given their developmental abilities and desires;
  • provide culturally responsive care to children and families that is respectful of difference in all its forms;
  • reduce pain and distressful symptoms for children with life-threatening illnesses;
  • provide emotional and spiritual support to children and families as they cope with the multiple losses associated with life-threatening conditions;
  • facilitate the resolution of families' practical needs, such as the need for respite, through coordination with the community;
  • facilitate continuity of care across care settings, both within and outside the hospital, by providing each family with a designated care coordinator;
  • offer bereavement support to the child and the family before and after death.
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How does IPPC maintain a family-centered focus?

Family advisors and consultants have been central in the development and dissemination of the IPPC curriculum. IPPC incorporates family perspectives in multiple ways: by offering seminars and other learning activities that promote the building of strong, culturally respectful relationships with children and families; by including innovative models and approaches for communicating effectively with parents and children; and through a series of powerful DVDs that portray children and families speaking in their own voices about what is important to them.

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What is distinctive about the IPPC curriculum?

IPPC is distinctive in including learning activities and resources/tools that are behaviorally oriented, with the intent of helping clinicians and institutions overcome the behavioral barriers to translating knowledge into practice. Behavioral barriers include attitudinal and skill-based deficits of individual clinicians, as well as organizational barriers, such as poor coordination of care, at the institutional level.

Other distinctive features include: IPPC's focus on culturally respectful, family-centered care, robust pedagogical techniques for which EDC is well-known, interactive and interdisciplinary learning activities, the provision of curriculum materials free of charge, and the ease of access to all materials through this website.

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What are the component parts of the IPPC curriculum?

The six modules are:

Each module is designed both to facilitate individual clinician learning and to support institutions wishing to strengthen their programs and services. There is a focus on knowledge, attitudes, skills and institutional systems change. Curriculum materials include: sample lectures and PowerPointâ slides; evocative videotapes that link curriculum content to the life experience of children, family members, and professional caregivers; case-based seminars; helpful tools and resources; and descriptions of promising new practices other institutions are developing.

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Has IPPC sponsored any conferences for health care professionals?

In November 2003, close to 500 professionals from across disciplines and across the country gathered at The New York Academy of Medicine to attend a national conference devoted to improving palliative care for children with life-threatening conditions and their families The two-day conference was the culmination of five years of research and planning by IPPC. With a mandate to alleviate suffering among dying children and their families, experts at the conference shared cutting-edge knowledge and skills essential to achieving high-quality pediatric palliative care. Speakers at the conference, which included family members as well as professionals, examined the challenges of equipping clinicians and institutions with the traits needed to provide optimum care during these vulnerable times. Attendees learned about innovative, field-tested programs of family-centered pediatric palliative care and attended breakout sessions in which they took part in selected seminars from the IPPC curriculum..

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Does IPPC have any tools available to assist quality improvement efforts?

You are welcome to download and use the Pediatric Palliative Care Institutional Self-Assessment Tool (ISAT), which we have developed to help hospitals assess the breadth and depth of their programs and services in pediatric palliative care, as well as Recommended Domains, Goals and Sample Quality Indicators for Pediatric Palliative Care, which IPPC has also developed to support quality improvements projects.

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How can I gain access to the curriculum materials?

Education Development Center, Inc. holds the copyright to all IPPC materials on this site. EDC makes these materials available to you—free of charge and downloadable—for your personal use and for non-commercial use within a single institutional setting. Clear attribution to the Initiative for Pediatric Palliative Care is expected when using these materials in any form.

Although EDC encourages the use of these curriculum materials for educational purposes within single health care settings, you may not reproduce or distribute these materials for any other purpose. The use of these materials to provide training of health care professionals across institutions or in a train-the-trainer format is prohibited without the express written permission of EDC.

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How can I purchase IPPC DVDs?

The IPPC DVD series offers rich, evocative portrayals of children, families, and professional caregivers in a range of palliative care contexts, and is a central part of the IPPC curriculum. These videos were created for use in the structured learning activities described in the facilitator's guides, but also can be used independently. Videos can be purchased by downloading the video order form and sending the form along with a check or money order to IPPC at the address provided.

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