How it began
The idea for the Experience Journals was born in 1996 in the pediatric Cardiac Intensive Care Unit at Boston Children’s Hospital. Two child and adolescent psychiatrists, Drs. David R. DeMaso and Joseph Gonzalez-Heydrich, were treating children undergoing heart surgeries and their families. In talking with children and caregivers, they recognized that families talk to other families. These helpful conversations pass along important stories and experiences that can only come from having had the lived experience of facing heart disease in one’s own child. They envisioned a computer-based intervention as means of conveying the collective wisdom of children and caregivers so as to support and enhance healthy coping strategies among participants as well as other families facing similar experiences.
These resilient children and families were the focus of the first Experience Journal: the Heart Experience Journal, published online in 2000. Research showed that the Journal was considered safe and helpful by mothers of children with heart conditions. These mothers also said that sharing their story and reading others’ stories made them feel more positive and less alone.
Today, the Experience Journals include 15 journals: ADHD, Asthma, Bereavement, Cerebral Palsy, Diabetes, Depression, Facing Violence, Hearing Loss, Heart, IBD, Overweight, Self-Cathing, Spanish Voices, Transplant, and Vascular Anomalies. Two more research studies have been done, one on the Depression Journal and one on the Self-Cathing Journal.
When we create or update an Experience Journal, we interview between 15-30 families including children, adolescents, young adults, caregivers, and other family members. We also interview 10-20 of their healthcare providers. All content is reviewed by a committee of adolescents, parents, staff, and clinicians to make sure stories are appropriate and helpful before being added to the site.
Our goal is to foster the strength and resilience that lies in every child and family facing adversity by providing the stories of others who have lived through similar experiences. Reviewers make every effort to include contributions that will be helpful to youth and families and that paint a realistic picture of an illness. We hope to capture both the challenges and the triumphs in families’ experiences.
Editor and Curator
David R. DeMaso, MD, Editor
Dr. DeMaso is Gardner and Monk Professor of Child Psychiatry and Professor of Pediatrics at Harvard Medical School, and Psychiatrist-in-Chief and Chairman of Psychiatry at Boston Children’s Hospital. He has dedicated his career to treating and better understanding the psychological effects of physical illness on children and their families.