SibACCESS: Developing a Telehealth Intervention to Address Unmet Psychosocial Needs of Siblings of Children with Cancer

项目摘要/摘要 儿童癌症会导致家庭系统的长期中断，这会让兄弟姐妹感到 与家人断绝联系，独自应对与癌症相关的强烈情绪。兄妹 经常报告高水平的负面情绪和创伤后应激，这可能会干扰他们的 行为功能、人际关系以及在学校上课和集中注意力的能力。结果 对于来自代表性不足的少数群体的兄弟姐妹和社会经济状况较差的人来说，情况更糟 资源。照顾兄弟姐妹的心理社会需求的重要性已经被记录在超过一个 百项研究，并已被指定为儿科肿瘤学的标准护理。然而，这一标准 关心很少得到满足。我们的试点数据突显了家庭对更好的兄弟姐妹支持的渴望，但没有良好的 为患有癌症的青年兄弟姐妹量身定做的干预措施。大多数医疗保健中心不提供兄弟姐妹 现有的少数兄弟姐妹干预措施与兄弟姐妹的临床表现很不匹配。 此外，大多数儿童癌症支持计划没有充分考虑到儿童癌症的文化差异 家庭对支持性干预的目标、内容或形式的偏好。兄弟姐妹患病的可能性 由于他们不在医院，这进一步限制了他们获得急需的支持，那里的大多数人支持 针对癌症儿童及其家庭的计划是基于。拟议的研究旨在解决这些问题 发展一种新的文化信息心理社会干预在临床实践中的问题 儿科医疗创伤应激框架，通过使用以下方法解决支持兄弟姐妹的系统性障碍 一种远程医疗方法。具体目标是(1)开发SIbACCESS(接受、应对、 沟通、参与和社会支持)计划，基于以创伤为重点的CBT框架和 根据来自讲英语和西班牙语的家庭的不同样本的反馈，完善该计划 以及(2)进行SibACCESS计划的试点试验，以评估初步的 干预措施的可行性和可接受性以及研究程序和材料的可行性 为未来更大规模的疗效试验做准备。社区利益相关者(兄弟姐妹、父母、提供者)拥有 对拟议工作的设计和目标作出了贡献，并将继续在所有 研究设计、分析、传播和未来方向的阶段。拟议的方案在其 在儿科医疗创伤应激框架中扎根，并相关关注增加兄弟姐妹的 接触和处理与癌症相关的线索。通过解决特定于兄弟姐妹的护理障碍和 针对兄弟姐妹的独特心理社会需求，SibACCESS有望使我们更接近满足 要求为患有癌症的青年兄弟姐妹提供心理社会服务的护理标准。反过来，更好的兄弟姐妹 预计支持将在一生中改善兄弟姐妹的心理社会功能，减少负面影响 减少家庭的兄弟姐妹调整问题，总体上减轻儿科癌症给家庭带来的负担。

PROJECT SUMMARY/ABSTRACT Childhood cancer leads to extended disruptions within family systems, which can leave siblings feeling disconnected from their families and left to cope with strong cancer-related emotions on their own. Siblings frequently report high levels of negative emotions and posttraumatic stress, which can interfere with their behavioral functioning, interpersonal relationships, and ability to attend and concentrate at school. Outcomes are worse for siblings from under-represented minority groups and for those with fewer socioeconomic resources. The importance of attending to siblings’ psychosocial needs has been documented in over one hundred studies and has been designated as a standard of care in pediatric oncology. Yet, this standard of care is rarely met. Our pilot data highlights families’ desire for better sibling support, but there are no well- established interventions tailored to siblings of youth with cancer. Most health care centers do not offer sibling programs, and the few existing sibling interventions are poorly matched to siblings’ clinical presentations. Furthermore, most supportive programs in childhood cancer insufficiently consider cultural differences in families’ preferences regarding the goals, content, or format of supportive interventions. Siblings’ likelihood of getting much-needed support is further limited by their absence from the hospital, where most supportive programs for children with cancer and their families are based. The proposed research aims to address these problems in clinical practice by developing a new culturally-informed psychosocial intervention guided by the pediatric medical traumatic stress framework that addresses systematic barriers to supporting siblings by using a telehealth approach. Specific aims are to (1) develop the SibACCESS (Acceptance, Coping, Communication, Engagement, and Social Support) program based on the trauma-focused CBT framework and refine the program based on feedback from a diverse sample of English- and Spanish-speaking families of children with cancer, and (2) conduct a pilot trial of the SibACCESS program to assess the preliminary feasibility and acceptability of the intervention and the feasibility of the research procedures and materials in preparation for future, larger-scale efficacy trials. Community stakeholders (siblings, parents, providers) have contributed to the design and aims of the proposed work and will continue to take a central role across all stages of research design, analysis, dissemination, and future directions. The proposed program is novel in its grounding in the pediatric medical traumatic stress framework and associated focus on increasing siblings’ exposure to and processing of cancer-related cues. By addressing sibling-specific barriers to care and targeting siblings’ unique psychosocial needs, SibACCESS is expected to move us one step closer to meeting the standard of care that calls for psychosocial services for siblings of youth with cancer. In turn, better sibling support is expected to improve siblings’ psychosocial functioning over the lifespan, lessen the negative impact of sibling adjustment problems on families, and overall, reduce the burden of pediatric cancer on families.