For anyone familiar with the world of childhood cancer, and in particular those who have had firsthand experience, the impact of a child’s diagnosis of cancer is often misunderstood. The diagnosis of cancer affects not only the child but the siblings and parents as well. The whole family ‘gets’ childhood cancer. The diagnosis of cancer in a child is so much more than a devastating cellular mutation with physical implications. It also significantly impacts the child’s emotional, social, and mental well-being.
I have had the opportunity to visit many children’s hospitals over the past 10 years since starting The Andrew McDonough B+ Foundation with Chris and Ali. I have been in hospitals where they seem to solely treat the child’s physical condition to hospitals that take a more holistic approach to the child’s overall well-being and that of his or her family as well. There are practitioners that seem stuck in the 1970s and those that are embracing the 21st century.
Leading the effort to dramatically change the psychosocial standards of care of our children with cancer are my friends Dr. Vicki Sardi-Brown and Peter Brown. Like my family, the Browns (see picture attached) know the daily pain of living in a world without their son. Mattie Brown died in 2009.
So in 2012, the Mattie Miracle Cancer Foundation made it their mission to get evidence-based psychosocial standards of care developed for children with cancer and their families. A three year-long international project driven by the Foundation, involving over 80 clinicians researchers, and representing the professions of Oncology, Nursing, Social Work, Psychiatry, Psychology, Child Life, Advocacy and survivors, produced fifteen Standards of Care that were published in a dedicated supplement in Pediatric Blood & Cancer.
The project is now focused on ensuring the Standards of Care are implemented across all cancer treatment sites, which as one can imagine, is not an easy thing to achieve. As co-founder and President of the Foundation Victoria Sardi-Brown, Ph.D says, “It’s not just about the medicine when you talk about dealing childhood cancer. You must address both the biomedical and the psychosocial components of cancer care to be truly comprehensive”, something the Institute of Medicine concluded and published in a landmark 2008 report. Efforts are now underway to identify the resourcing, delivery models, reimbursement methods and educational criteria required to get the Standards of Care implemented. The vision is that all children with cancer and their families will get a standard of psychosocial support, from date of diagnosis through treatment, survivorship, end of life and in bereavement.
The Andrew McDonough B+ Foundation is honored to be one of the early endorsers of the Psychosocial Standards of Care for Children With Cancer and their Families. If you’d like to learn more about the Standards, please click here.
We owe a debt of gratitude to Vicki & Peter for championing a much-overlooked and critically important area of care for our kids.
Mattie’s legacy lives on.
Ali & Andrew’s Dad