Quality Components for Pediatric Cancer Communication in Global Settings
Abstract
BACKGROUND AND OBJECTIVES In pediatric cancer care, high-quality communication reduces parental anxiety, increases trust, enables decision-making, and fosters hope. This study sought to develop globally applicable quality components for patient-centered pediatric cancer communication. METHODS This multiphase, mixed-methods study included interviews, a participant-engaged workshop, and a modified Delphi process. Participants included adult childhood cancer survivors, caregivers of children with cancer, clinicians, and experts in communication from all 6 World Health Organization regions. RESULTS Semistructured interviews with 18 survivors, 19 caregivers, and 27 clinicians established 13 domains of high-quality communication. These included 9 previously identified functions (building relationships, enabling family self-management, responding to emotions, making decisions, managing uncertainty, information exchange, supporting hope, providing validation, and trust) and 4 additional domains (clinician level factors, structural factors, inclusive communication, and tailored/personalized communication). During the workshop, 48 participants defined priority areas and identified 190 preliminary quality components. Ultimately, 34 participants engaged in a modified Delphi process and narrowed the set to 83 quality components. These include structural (16; 19%), process (25; 30%), and outcome (42; 51%) measures. Most components (53; 64%) rely on patient or caregiver report, whereas 17 (20%) depend on clinician report and 13 (16%) can be assessed at the institution level. CONCLUSIONS This multiphase, person-centered approach resulted in quality components for pediatric cancer care that can be broadly applied. Future work will be necessary to validate these components as measures of pediatric cancer communication across global settings and implement them as intervention endpoints.
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Authors: Dylan E. Graetz, Anneliese H. Williams, Gia Ferrara, Lara Counts, Shayla Lawrence, Maricela Robles‐Murguia, Nester Chokwenda, Nisrein Al-Aqqad, Carlos Rodríguez‐Galindo, Sara Malone, Jennifer W. Mack
Institutions: Washington University in St. Louis, Dana-Farber Cancer Institute, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, King Hussein Cancer Center, St. Jude Children's Research Hospital, Harare Central Hospital