Medical Professional Publications

What Kind of Psychosocial Care Do Children With Cancer and Their Families Need?

Columbus, OH - July 2016

While it’s generally accepted that children with cancer and their families face many psychosocial risks, the best ways of supporting this vulnerable population have needed clarity. A recent publication of evidence-based standards, with substantial contributions from Nationwide Children’s Hospital faculty, identifies for the first time psychosocial care that experts consider essential for youth with cancer and their families.

Fifteen “Psychosocial Standards of Care in Pediatric Oncology” were developed after a three-year-long process and consultations with dozens of professionals in the fields of oncology, psychiatry, psychology, social work and nursing, according to Tammi Young-Saleme, PhD, director of Psychosocial Services and Program Development in the Division of Hematology/Oncology/BMT at Nationwide Children’s. Dr. Young-Saleme joined the effort in 2013.

“I have been a psychologist in this field for 18 years, and I have seen so much variety in what is provided to families. There is such a difference in the quality of care between institutions and providers,” explains Dr. Young-Saleme. “We wanted something to say, ‘This is what we should expect. This is what helps people the most.’”

The international standards, first published in a special issue of Pediatric Blood and Cancer, were narrowed down from a larger list of possibilities, says Dr. Young-Saleme. Working groups formulated potential standards and evaluated evidence for each one.

Three standards have faculty members from Nationwide Children’s as authors:

  • Dr. Young-Saleme was senior author of the article describing the standard for anticipatory guidance and psychoeducation: Youth with cancer and their family members should be provided with psychoeducation, information, and anticipatory guidance related to disease, treatment, acute and long-term effects, hospitalization, procedures, and psychosocial adaptation. Guidance should be tailored to the specific needs and preferences of individual patients and families and be provided throughout the trajectory of cancer care.
  • Cynthia A. Gerhardt, PhD, director of the Center for Biobehavioral Health and co-director for the Patient-Centered Pediatric Research Fellowship (PC-PReP) in The Research Institute, was lead author of the article describing the standard for sibling support: Siblings of children with cancer are a psychosocially at-risk group and should be provided with appropriate supportive services. Parents and professionals should be advised about ways to anticipate and meet siblings’ needs, especially when siblings are unable to visit the hospital regularly.
  • Stacy Flowers, PsyD, a psychologist in Neuro-OncologyPediatric Psychology and Psychosocial Services, was lead author of the article describing the standard for procedural preparation and support: All youth with cancer should receive developmentally appropriate preparatory information about invasive medical procedures. All youth should receive psychological intervention for invasive medical procedures.

The entire list of standards can be found here:

While large institutions may have the resources to achieve all of the standards, they are likely to be aspirational for others, Dr. Young-Saleme says.  

“It would be very challenging for a small institution to meet the standards,” she says. “You can, though, use the standards to go to your administration and say, ‘We are not meeting the needs of our families. These are really essential for the wellbeing of patients and families.’ It can be leverage.”

Standards for Psychosocial Care for Children With Cancer and Their Families [Special Issue]. Pediatric Blood and Cancer. December 2015, 62.

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