A non-profit partnership working
to enhance care for children with life-threatening conditions through
education and research, including a seven-hospital pilot project and
training of caregivers around the country. Phone: 617-618-2822
Children’s Hospice International
A non-profit advocacy, support and
education group and lead agency working with several states on developing
new models of care for critically ill children. Phone: 1-800-2-4-CHILD
National Institute of Nursing Research
The lead institute for end-of-life research within the National Institutes of Health. NINR is sponsoring a
research initiative in end-of-life care for children.
When Children Die
The National Institute of Medicine’s 2002 report on the
problems in end-of-life care and recommendations to do better.
Ronald McDonald House of Baltimore
A home away from home for seriously ill children, who are undergoing treatment at a Baltimore hospital, and their
families. Phone: 410-528-1010
The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
A guide to pediatric oncology services at Hopkins.
Resources for seriously ill children:
The Starbright Foundation
A non-profit group led by Steven Spielberg
that creates projects to help children cope medically and emotionally with
illness. Uses entertainment, relaxation and other techniques to help kids
prepare for procedures. Includes Web-based program that allow sick kids to
connect with peers in other hospitals. Phone: 310-479-1212
Brave Kids
Support, message groups, games and other help for children with
chronic, serious or life-threatening illnesses or disabilities.
For Parents:
Harriet Lane Compassionate Care, Johns Hopkins Children’s Center
Support and services for critically ill children at Hopkins, also grief and
bereavement help. Phone: 410-955-0055.
Compassionate Friends
A support group for any parent who has lost a child, no matter what age.
Candlelighters Childhood Cancer Foundation
Support, education and
advocacy for families and children with cancer, also has message boards for
parents.
Parents’ Guide to Medical Research
An interactive Web site from the Children’s Hospital Boston, funded by the National Institutes of Health. The site helps parents make informed decisions about their child’s participation in medical research.
Books for parents:
Shelter from the Storm: Caring for a Child with a Life-Threatening
Condition, by Dr. Joanne Hilden and Dr. Daniel Tobin, 2003.
A practical
guide full of emotion and wisdom that addresses parents’ worst fears.
Home Care for Seriously Ill Children, third edition, editors Stacy Orloff
and Susan M. Huff, 2003.
A manual for parents from Children’s Hospice
International.
Armfuls of Time: The Psychological Experience of the Child with a
Life-Threatening Illness, by Barbara M. Sourkes, 1995.
A veteran therapist
gives a rare look into the world of dying children.
Hannah’s Gift, Lessons from a Life Fully Lived, by Maria Housden, 2002.
A
mother tells the story of her daughter Hannah, and what she learned from
her life and death.
The Bereaved Parent, by Harriet Sarnoff Schiff, 1978.
Schiff is a bereaved
parent and journalist. She gives practical advice on coping with a child’s
death and rebuilding the lives of the survivors.
What Forever Means: After the Death of a Child, by Kay Talbot, 2002.
A
bereaved parent who is a psychotherapist writes about the trauma of losing
a child, and how parents can find a way to live with this loss.
For siblings and other children who are grieving:
Support group, Johns Hopkins Children’s Center Phone: 410-955-0055
Camp Jamie, Hospice of Frederick County
A weekend camp for children ages 6 to 14 who have lost a loved one.
SuperSibs
A national support group for young brothers and sisters of children with cancer. Phone: 1-866-444-SIBS
For professionals
Palliative Care for Infants, Children and Adolescents, editors, Dr. Brian Carter and Dr. Marcia Levetown, 2004.
A practical
handbook
Hospice Care for Children, second edition, editors, Ann Armstrong-Dailey,
Sarah Zarbock, 2001.
The Private Worlds of Dying Children, by Myra Bluebond-Langner, 1978.
