Wiener Lori, Buff Kimberly, Canter Kimberly, Pariseau Emily, Scialla Michele A, Brown Victoria Sardi, Kazak Anne E
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Momcology, Saint Paul, Minnesota, USA.
Pediatr Blood Cancer. 2025 Mar;72(3):e31474. doi: 10.1002/pbc.31474. Epub 2024 Dec 15.
Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study. The partnership was critical for all steps of the research process, including study development, refinement of the survey instrument, and recruitment procedures. We describe our overall approach, providing specific illustrative examples and highlighting opportunities for future growth.
在儿科社会心理研究中，纳入并提升患者及其家庭的声音至关重要。虽然这一做法被视为优先事项，但并不常见，而且关于最佳实践和程序的具体指导也基本缺失。本文描述了与儿科肿瘤患者权益倡导组织公平合作开展“共同实施标准：让家长和医护人员参与社会心理护理”（iSTEPPP）研究的情况。这种合作关系对研究过程的各个步骤都至关重要，包括研究设计、调查问卷的完善以及招募程序。我们描述了总体方法，提供了具体的示例，并强调了未来发展的机会。
