HAP’s pediatric palliative care and hospice program (formerly Greater Illinois Pediatric Palliative Care Coalition) collaborates with hospital systems, hospices, families, and supporting organizations dedicated to optimizing the quality of life for every child in Illinois living with childhood cancer or medical complexities from serious illness, their families, and the teams that care for them. Our program is focused on providing education, research, advocacy and workforce development to improve the lives of children and families involved in pediatric hospice and/or palliative care. Our collaboration with national organizations provides opportunities to advocate for children and family’s needs, as well as learn innovative practices and participate in research to enrich lives across the country, while bringing back this information to Illinois residents. We proudly work in collaboration with our Parent Advisory Committee to ensure the voice of patients and families remain the foundation of our work.
Historical Impact
Building on our history, HAP’s pediatric program leverages knowledge, experience and progress in pediatric palliative care and hospice for children, their families and care teams.
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Parent Engagement
At HAP, we understand that parents know their child best. That’s why we created the Pediatric Parent Advisory Committee and monthly Parent Support Group to ensure family-centered care is included in every conversation.
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Needs Assessment for Illinois Families
Our team is conducting a needs assessment to learn more about the experience of children and families affected by life limiting diagnosis in Illinois. We are seeking responses from professionals across settings (i.e., early intervention, school, outpatient rehabilitation, hospitals, and outpatient palliative and hospice care programs) to define areas of care and collaboration that Illinois is exceling, learn methods to improve coordination of care in urban and rural areas, and identify training needs throughout the state. Reach out to scpox@thehapfoundation.org if you can support this initiative.
Pediatric Resource Guide
Experience a collection of resources to assist caring for children with serious illness, their families and practitioners throughout their journey.
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Missing Pieces
Missing Pieces, a program of The HAP Foundation, provides a centralized hub for grief support, education, and resource navigation for children, families, and communities impacted by a pediatric death. We work in collaboration with more than 70 organizations that bring expertise in supportive bereavement for child loss by illness, trauma, homicide, drug overdose, and suicide; they serve families and children grieving perinatal through young adult deaths. Missing Pieces partners work together through education, program development, research, and collaboration to improve bereavement care and raise awareness about the unique needs of grieving families.
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If you or someone you know has lost a child and are seeking support, please click here to connect with our team.
Child Life Hospice & Palliative Network
Child Life Hospice & Palliative Network (CLHPN) is a professional community of Certified Child Life Specialists actively engaged in hospice and palliative care. CLHPN provides child life specialists working in hospice and palliative care access to resources, education, and community to establish and provide best practice care for patients and families experiencing a serious illness. To learn more about CLHPN, contact info.clhpn@thehapfoundation.org.
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Click here to read the CLHPN State of Profession
