external parent Resources
Though we grieve with you that you need this information, we are here to support you to ensure your child and your entire family can enjoy the best quality of life possible, despite your child’s health condition. This site is under development with new information and resources added regularly. We look forward to providing information and resources to not only help in the care of your child, but also to help maintain your own well-being and relationships, that of your other children and other family members and your community, all of whom are affected.
We hope you find the following resources helpful:
The Association for Children's Palliative Care in the United Kingdom has issued an end-of-life planning fact sheet to help parents plan for a terminally ill child's death. The organization encourages parents to plan ahead as soon as they are told that the child is approaching end of life so that they do not need to think about practical matters and can spend as much time as possible with the child as death nears.
Family-to-Family Health Information Centers
Family-to-Family Health Information Centers (F2F HICs) are non-profit, family-staffed organizations that help families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. Because the health care needs of CYSHCN are chronic and complex, parents and caregivers are often challenged with finding the resources to provide and finance health care for their children. F2F HICs are uniquely able to help families because they are by parents and family members of CYSHCN themselves who have first-hand experience navigating the maze of services and programs for CYSHCN.
What is Palliative Care: A closer look into the topic of palliative care.
Special Needs Respite Care Guide: Care Options
Children's Brain Tumor Foundation
The Children’s Brain Tumor Foundation seeks to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.
Children’s Hospice and Palliative Care Coalition – Resources
This Web site provides parents access to the Partnership for Parents support network, an opportunity to share your stories of hope and messages of love about your children, and an extensive list of link to resources and organizations for families and friends of children with life-threatening conditions. Topics covered include: sibling support, financial assistance, and emotional/grief support.
Partnership for Parents
Parents of children with life-threatening conditions have unique needs, questions, and concerns. At Partnership for Parents you can join a support network created for you, by parents like you.
Please check back as we add information to help answer your questions, such as:
- What is a “Family Meeting”?
- What are “Goals of Care”?
- What is a “Care Plan”?
- What questions should I ask when deciding with my child, his or her physician, and the rest of the team about goals of care and treatment plans?
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.