Leveraging the Patient and Family Voice in the Development of Patient Education: Supporting the Pediatric Oncology Experience

Given the understandable patient and caregiver distress that often fluctuates across treatment, especially at diagnosis and with major disease milestones, it is important to prioritize interventions that are known to best support families during these key times of transition. Individualized and time-sensitive psychoeducation and anticipatory guidance are effective interventions in reducing distress and fostering adaptive coping across the cancer trajectory and are a standard for the psychosocial care of children with cancer and their families. Patient education materials have proven to be a flexible, accessible, cost-effective, and easily adaptable tool for delivering these interventions to this population. Moreover, within the field, there has been a call to action for the inclusion of patients and families in the development of research study design and clinical programming, recognizing them as the experts of their own experiences. This commentary aims to explore how patients and families can be actively involved in the creation, assessment, and implementation of patient education materials, fostering a collaborative partnership between families and clinicians. We provide detailed examples of this collaboration in the creation of patient education materials focused on promoting coping at diagnosis, supporting siblings and assisting with social reintegration at the end of treatment, promoting responsive caregiving for young children, and supporting caregiver coping through the creation of a podcast. Ultimately, this commentary seeks to emphasize the importance of partnering with patients and families to ensure their voices remain central to intervention development and implementation.