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Professional Organizations

American Academy of Hospice and Palliative Medicine (AAHPM) - professional organization for physicians specializing in hospice and palliative medicine.  Membership also open to nurses and other healthcare providers committed to improving the quality of life of patients and families facing life-threatening or serious conditions. 

Palliative Care Fellowship Directory - list of all active palliative medicine fellowship programs

American Pain Society - Special Interest Group (SIG) on Pain in Infants, Children and Adolescents - site includes information about the SIG, position statements about pain in children and a list of pediatric chronic pain programs in the U.S

Center to Advance Palliative Care (CAPC) - provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings

Child Life Council - provides information about certification, a career center and an extensive resource library 

Children's Hospice International (CHI) - provides education, training and technical assistance to those who care for children with life-threatening conditions and their families. This site includes an international Resource Directory providing information for more than 1500 programs around the world that care for children with life-threatening conditions and their families.

End-of-Life Nursing Education Consortium - national nursing education initiative to improve palliative care

Growth House, Inc. - international gateway to resources for life-threatening illness, grief, palliative and end of life care

Institute for Patient- and Family-Centered Care (IFCC) - provides leadership to advance the understanding and practice of patient- and family-centered care in hospitals and other health care settings

National Consensus Project for Quality Palliative Care (NCP) - promotes Clinical Practice Guidelines to ensure consistent, high quality care, and to guide the development and structure of new and existing palliative care services

National Association for Home Care and Hospice – Pediatric Home Care Association of America - includes a locator to find home health and hospice agencies that provide pediatric services in the home.

National Hospice and Palliative Care Organization (NHPCO) - largest nonprofit membership organization representing hospice and palliative care programs and professionals in the US.  NHPCO advocates for the terminally ill and their families, develops public and professional educational programs and materials; convenes meetings and symposia on emerging issues; provides technical informational resources; conducts research; monitors Congressional and regulatory activities.

Children's Hospice and Palliative Care Services Project (ChiPPS) - ChiPPS works to concretely enhance the science and practice of pediatric hospice and palliative care, and to increase the availability of state of the art services to families. Also an interdisciplinary curriculum for pediatric palliative care is available on this site.

National Network for Pediatric Palliative Care - provides an interactive community, links services and expertise, and creates a meeting place for primary care providers, palliative care specialists, hospice care, home care, and hospital based services providing pediatric palliative care in the US.  This site includes a map of Hospice Care and Pediatric Hospital locations across the country. 

Pediatric Ethics Consortium (PEC) - offers opportunities for discussion among the members through a LISTERV® e-mail list and participants' directory as well as identification of resources through web pages, data archives, and links.

International Organizations

Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT)
Housed in the UK, The ACT Charter is intended to raise awareness and understanding among all those who come into contact with children with life-threatening conditions and their families. The site includes a range of educational tools, guidance, information and publications, including an annually updated hospice medication protocol, to help professionals improve their knowledge and skills in caring and supporting children and families.

Royal Children’s Hospital Melbourne
This site provides valuable insights and extensive information about clinical management including medication guidelines and procedure related pain management guidelines for neonates and children.

Palliative Care Guidelines - Paediatric Palliative Care Guidelines (Scotland)
This site includes resources on pain assessment and management, grief and bereavement in addition to a list of other resources for professionals and parents.

Canadian Network of Palliative Care for Children
The site includes a list of helpful links related to pediatric palliative care including education and guidelines. 

Treatthepain.com
Global Access to Pain Relief Initiative. LIFE Before Death documentary series is about the global crisis in untreated pain and the dramatic life changing effect palliative care services can deliver to patients and their families around the world.  In this short film we discover that the barriers to pediatric palliative care are very complex and pain in children is often under treated. We learn that providing good care is crucial to the quality of life for the child but that support needs to extend to the whole family.

The International Children’s Palliative Care Network (ICPCN)
A worldwide network of individuals and agencies working with children and young people with life-limiting conditions.

The Social Work in Hospice and Palliative Care Network (SWHPN)
The first social work organization in end-of-life and palliative care. SWHPN was created to bridge the gaps in social work’s access to information, knowledge, education, training, and research in hospice and palliative care.

Education and Training Resources

Hospice/Palliative Care Training for Physicians: The UNIPAC Book Series - consists of 8 books on Hospice/Palliative care Training for Physicians that provide comprehensive training from leaders in hospice and palliative care in one convenient self-study course

Initiative for Pediatric Palliative Care (IPPC) - provides QI tools, including an implementation guide for integrating families into clinician education, a comprehensive, interdisciplinary curriculum and other resources aimed at enhancing family-centered care for children living with life-threatening conditions

Stanford End of Life Curriculum - online, self study  intended for any member of the palliative care team, including medical students, residents, fellows, physicians, social workers, psychologists, and chaplains

Hospice & Palliative Medicine Focused Assessment & Study Tool (FAST) - Pediatrics - online practice module contains 25 questions and includes explanations and up-to-date references to provide guidance for further study.

Combined Curriculum in Paediatric Palliative Medicine - set of competencies (knowledge, skills and attitudes) and tools to evaluate them

NHPCO E-OL Pediatric Palliative Care Training Series - 10 online educational modules for healthcare professionals. Content was written by leading pediatric palliative/hospice care experts in the field and is available through NHPCO’s E-Online.

Publications

Children's Hospice and Palliative Care Services Project (ChiPPS) Newsletter - quarterly newsletter focused on various aspects of a topic in pediatric palliative care

JournalClub - updated daily, JournalClub filters and organizes the most current articles on palliative care and allows easy browsing of the latest issues of palliative care journals, and other selected journals

Pediatric Pain Letter (PPL) - provides free, open-access to peer-reviewed commentaries on pain in infants, children and adolescents.

Pediatric Pain LISTSERV - The PEDIATRIC-PAIN mailing list is an international Internet forum for informal discussion of any topic related to pain in children. Appropriate subjects include clinical problems or questions, research problems or proposals, announcements of meetings, book reviews, and political or administrative aspects of children's pain management and prevention.

Pediatric Facts & Figures PDF - provides  overview of the landscape of pediatric palliative and hospice care for providers, policy makers, funders and the media.

NHPCO Standards of Practice for Pediatric Hospice and Palliative Care Programs - national pediatric standards that set clinical and organizational precedence for pediatric hospice and palliative care programs 

Basic Symptom Control in Paediatric Palliative Care - UK children’s palliative care charity Together for Short Lives has launched a newly revised and extended key resource for all doctors and nurses providing care and support to terminally ill or life-threatened children. This resource aims to provide doctors and nursing staff with an ‘all in one’ reference tool for symptom management and children’s palliative care medicines

Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research - In this report, the IOM offers a blueprint for action in transforming prevention, care, education, and research, with the goal of providing relief for people with pain in America. To reach the vast multitude of people with various types of pain, the nation must adopt a population-level prevention and management strategy.

When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families - IOM consensus report that identifies and addresses 4 key messages related to the system of palliative, end-of-life and bereavement care and education that supports children who die, their families and the professionals who care for them

Clinical Practice Guidelines for Quality Palliative Care, 2nd Edition PDF - developed by the National Consensus Project for Quality Palliative Care to describe the core precepts and structures of clinical palliative care programs.


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The Section on Hospice and Palliative Medicine nor the American Academy of Pediatrics are responsible for the information that external Web sites post or link to, nor do they represent official endorsement of the Web sites' affiliation or opinions.