Jones Anna M, Marchetta Alyssa, Parris Kendra R, Heidelberg R Elyse, Jurbergs Niki
St. Jude Children's Research Hospital, Memphis, TN 38105, USA.
Cancers (Basel). 2025 Apr 1;17(7):1201. doi: 10.3390/cancers17071201.
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.
鉴于患者及其照料者在整个治疗过程中，尤其是在诊断时和重大疾病节点，经常会出现明显的痛苦情绪波动，因此在这些关键的过渡时期，优先考虑那些已知能为家庭提供最佳支持的干预措施非常重要。个性化且时效性强的心理教育和预期指导是减轻痛苦、促进患者在整个癌症病程中适应性应对的有效干预措施，也是癌症患儿及其家庭心理社会护理的标准做法。事实证明，患者教育材料是向这一群体提供这些干预措施的一种灵活、便捷、经济高效且易于调整的工具。此外，在该领域，人们呼吁让患者及其家庭参与研究设计和临床规划的制定，将他们视为自身经历的专家。本评论旨在探讨患者及其家庭如何积极参与患者教育材料的创建、评估和实施，促进家庭与临床医生之间的合作伙伴关系。我们提供了详细示例，展示了在创建患者教育材料过程中的这种合作，这些材料聚焦于促进诊断时的应对、支持兄弟姐妹、协助治疗结束时的社会重新融入、促进对幼儿的响应性照护，以及通过创建播客来支持照料者应对。最终，本评论旨在强调与患者及其家庭合作的重要性，以确保他们的声音在干预措施的开发和实施中始终处于核心地位。
