Kimberly Buff, Founder and Executive Director at Momcology, shared on LinkedIn:
“New Publication in Pediatric Blood & Cancer from the iSTEPPP Study | While parents and providers often agreed on what matters, they did not always describe why it matters in the same way.
Parents more often spoke from the immediate lived consequences of unmet psychosocial and financial needs, while providers tended to frame their importance through broader medical and psychosocial outcomes.
That distinction matters. Clinical expertise tells us one part of the story. Lived experience tells us another. We need both to build care that truly meets families where they are.
I’m grateful that Momcology families contributed their experiences to this work and that patient and family advocates were integrated into the study from survey development and recruitment through interpretation of the findings. This is what meaningful research partnership can look like.
Thank you to our iSTEPPP team at Nemours, the advocacy partnership with Mattie Miracle Cancer Foundation, and funding from the Andrew McDonough B+ Foundation.”
Title: Provider and Parent Perspectives on Prioritizing the “Asking and Monitoring” Pediatric Cancer Psychosocial Standards of Care
Authors: Julia B. Tager, Natalie Koskela-Staples, Emily M. Pariseau, Michele Scialla, Kimberly Buff, Lori Wiener, Victoria Sardi Brown, Anne E. Kazak, Kimberly S. Canter
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