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

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Title: Leveraging the Patient and Family Voice in the Development of Patient Education: Supporting the Pediatric Oncology Experience.
Authors: Jones, Anna M., Marchetta, Alyssa, Parris, Kendra R., Heidelberg, R. Elyse, Jurbergs, Niki
Source: Cancers; Apr2025, Vol. 17 Issue 7, p1201, 13p
Subject Terms: PATIENT education, PATIENTS' families, TUMORS in children, INTERPROFESSIONAL relations, MEDICAL personnel, PSYCHOLOGICAL distress, COST effectiveness, INDEPENDENT living, HUMAN services programs, PATIENT-family relations, REHABILITATION, PARENT attitudes, PSYCHOEDUCATION, PSYCHOLOGICAL adaptation, FAMILY-centered care, STREAMING media, SOCIAL support, PATIENT care conferences
Abstract: Simple Summary: The inclusion of patient families in clinical program development and research design has received growing recognition in recent years. While the existing literature highlights broad involvement methods, such as focus groups and patient and family advisory councils, detailed examples of how these collaborations shape intervention development and execution—particularly in the context of patient education materials in pediatric oncology—remain limited. This commentary aims to highlight the importance of leveraging the patient and family voice in the development of patient education materials to further support the pediatric oncology experience. By examining the research to date and offering concrete examples of these collaborations, the authors hope to highlight not only practical approaches but also the critical importance of keeping the patient and family voice at the center of this work. 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. [ABSTRACT FROM AUTHOR]
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Database: Complementary Index
Description
Abstract:Simple Summary: The inclusion of patient families in clinical program development and research design has received growing recognition in recent years. While the existing literature highlights broad involvement methods, such as focus groups and patient and family advisory councils, detailed examples of how these collaborations shape intervention development and execution—particularly in the context of patient education materials in pediatric oncology—remain limited. This commentary aims to highlight the importance of leveraging the patient and family voice in the development of patient education materials to further support the pediatric oncology experience. By examining the research to date and offering concrete examples of these collaborations, the authors hope to highlight not only practical approaches but also the critical importance of keeping the patient and family voice at the center of this work. 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. [ABSTRACT FROM AUTHOR]
ISSN:20726694
DOI:10.3390/cancers17071201