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:
What is Palliative Care?
A closer look into the topic of palliative care.
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 – Family 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.
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.
Palliative Care: Conversations Matter
This campaign of the National Institute of Nursing Research is intended to raise awareness of pediatric palliative care. It aims to increase the use of palliative care for children living with a serious illness and encourages parents and caregivers to ask their health care provider how they can receive palliative care services. Parents can search for a palliative care program at a hospital in their area and get answers to common questions.
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?
Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child
Developed by the Conversation Project, this Kit is designed to help parents of seriously ill children who want guidance about "having the conversation" with their children. It offers advice and questions that can help parents navigate their approach to the end-of-life conversation based on the personality and cognitive level of the child. It also provides stories from parents and palliative care specialists who have had the conversation. There is no prescriptive, one-size-fits-all methodology, but rather multiple ways to begin this conversation.
Special Needs Respite Care Guide: Care Options
Together for Short Lives
Together for Short Lives is the leading United Kingdom charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. They support families, professionals and services, including children’s hospices. Their work helps to ensure that children can get the best possible care, wherever and whenever they need it.
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.