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Resources for Healthcare Providers of Children with Medical Complexity

The National Hospice and Palliative Care Coalition is the nation’s largest organization for professionals working in hospice and palliative care. Their pediatric page offers resources and educational tools for professionals as well as brochures for families in both English and Spanish:

The National Institute of Nursing Research offers tools and videos to help providers improve discussions with families about pediatric palliative care:

The Courageous Parents Network offers a free CME in advance care planning and pediatric palliative care:

Vital Talk is a non-profit organization with a goal of improving the connection between physicians and patients. They offer courses in communication skills and faculty training to help clinicians foster the skills necessary to effectively discuss issues surrounding patients with serious illness or who may be at the end of life.

American Academy of Pediatrics – Hospice and Palliative Medicine Section

American Academy of Pediatrics – Hospice and Palliative Medicine Section - Resiliency Curriculum:

American Academy of Pediatrics: Pediatric and Palliative Care Listserv access: PPCAAP@LISTSERV.AAP.ORG

Digest for Complex Care Listserv access:

Children’s Project on Palliative/Hospice Services (ChiPPS):

National Hospice and Palliative Care Organization:

Concurrent Care

For many years, healthcare professionals and families with children living with life-limiting or life-threatening conditions (LL/LTC) had few options for Medicaid coverage when children were very seriously ill. Parents in all but a few states were faced with forgoing curative/life prolonging treatments for their children to be eligible for hospice services. Or conversely, they were not eligible for beneficial interdisciplinary hospice services while getting curative treatment. The Patient Protection and Affordable Care Act (PPACA) changed that situation, and now requires the state Medicaid program to pay for both curative/life prolonging treatment and hospice services for children under age 21 who qualify.

For more information regarding concurrent care please visit:

Communication Counts Toolkits

Communication Counts: A Toolkit for Families Experiencing Childhood Illness is a practical, innovative, and comprehensive resource to support families with a school-age child living with life-threatening illness (LTI). Based on the chronology of a child’s illness, and not specific to type of LTI, the goal is to give parents the information they need, when they need it, without overwhelming them with too much advanced detail. Our research concluded that Communication Counts increases parents’ 1) confidence in caring for their ill child, 2) positive coping skills through the use of direct and open communication, and 3) willingness to communicate about their child’s illness.

Communication Counts offers three distinct and separate toolkits, tailored to the stage of the illness the child is experiencing:

1)  Supporting Your Child and Family During Diagnosis and Treatment. This toolkit focuses on helping parents to use communication to seek information on their child’s illness and treatment, to empower the parents to advocate for their child, and to support the family in using positive coping skills to reduce stress, anxiety, and burden.

2)  Supporting Your Child and Family While Transitioning to Supportive Care. This toolkit provides parents with ways to use communication to promote quality of life as their child transitions from a curative-based treatment focus to one of support and comfort for the child nearing the end of his or her life.

3)  Supporting Your Family Through Bereavement. This toolkit offers families ways to use open communication to understand and process their grief, to honor the memory of their child, and to actively cope with their loss after the death of their child.

Videos from DVD on YouTube:

Perinatal Palliative/Hospice Care

Perinatal Hospice and Palliative Care:

Brenner Children’s Hospital – Care Always Program:

Perinatal Loss and Infant Death Alliance (PLIDA):

  • Pediatric Enhanced Care Program
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  • Additional Information

    Learn how to prepare for COVID-19 while caring for children with medically complex conditions.