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

SibACCESS：制定远程医疗干预措施，解决癌症儿童兄弟姐妹未得到满足的心理社会需求

• 批准号: 10201821
• 负责人: Kristin Ann Long
• 金额: $ 9.56万
• 依托单位: BOSTON UNIVERSITY (CHARLES RIVER CAMPUS)
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-03-09 至 2023-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10201821
• 关键词: Absenteeism; Address; Adolescent; Adult; Age; Attention; Behavioral; Cancer Burden; Cancer Family; Caring; Child; Childhood; Childhood Cancer Treatment; Clinical; Collaborations; Communication; Communities; Cues; Cultural Diversity; Cultural Sensitivity; Data; Diagnostic; Distress; Emotional; Emotions; Enrollment; Ensure; Ethnic Origin; Ethnic group; Exposure to; Family; Feedback; Feeling; Future; Gender; Goals; Health; Health behavior; Healthcare; Hospitals; Interpersonal Relations; Intervention; Left; Logistics; Longevity; Malignant Childhood Neoplasm; Malignant Neoplasms; Manuals; Measures; Medical; Minority Groups; Nature; Outcome; Parents; Participant; Pediatric Oncology; Persons; Post-Traumatic Stress Disorders; Preparation; Procedures; Provider; Psychiatric Social Work; Psychosocial Assessment and Care; Race; Reporting; Research; Research Design; Resources; Risk; Role; Sampling; School-Age Population; Schools; Siblings; Social support; Stress and Coping; System; Technology; Testing; Time; Trauma; Treatment Protocols; Underrepresented Minority; Underrepresented Populations; Work; Youth; acceptability and feasibility; barrier to care; base; cancer diagnosis; cancer therapy; clinical practice; coping; design; distress tolerance; efficacy evaluation; efficacy trial; feasibility research; improved; intervention effect; meetings; novel; peer; pilot trial; post-traumatic stress; preference; programs; psychosocial; recruit; response; service delivery; social; socioeconomics; standard of care; stressor; survivorship; telehealth; therapy development; traumatic stress; treatment center

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.

项目摘要/摘要 儿童癌症会导致家庭系统内部的破坏，这可能会使兄弟姐妹感到 与他们的家人脱节，离开了自己的情绪。兄弟姐妹 经常报告高水平的负面情绪和创伤后压力，这会干扰他们的 行为功能，人际关系以及上学和集中精力的能力。结果 来自代表性不足的少数群体和社会经济较少的兄弟姐妹的兄弟姐妹更糟 资源。参加兄弟姐妹的社会心理需求的重要性已在一个以上记录 数百项研究已被指定为小儿肿瘤学的护理标准。但是，这个标准的 照顾很少见。我们的飞行员数据强调了家庭对更好的兄弟姐妹支持的渴望，但没有很好的 针对癌症青年兄弟姐妹量身定制的既定干预措施。大多数医疗保健中心不提供兄弟姐妹 程序，以及少数现有的兄弟姐妹干预措施与兄弟姐妹的临床演示匹配不佳。 此外，儿童癌症中大多数支持的计划不足以考虑文化差异 家庭对支持干预措施的目标，内容或格式的偏好。兄弟姐妹的可能性 得到急需的支持进一步受到医院的缺席的限制，那里最支持 针对癌症儿童及其家人的计划是基于的。拟议的研究旨在解决这些问题 临床实践中的问题通过开发新的文化知识的社会心理干预措施。 小儿医学创伤压力框架，通过使用来解决兄弟姐妹的系统障碍 远程医疗方法。具体目的是（1）开发sibaccess（接受，应对， 基于以创伤为重点的CBT框架的沟通，参与和社会支持）计划 根据潜水员的反馈来完善该计划 癌症儿童和（2）进行Sibaccess计划的试点试验，以评估初步 干预的可行性和可接受性以及研究程序和材料的可行性 为将来的大规模效率试验做准备。社区利益相关者（兄弟姐妹，父母，提供者） 为拟议工作的设计和目标做出了贡献，并将继续在所有人中发挥核心作用 研究设计，分析，传播和未来方向的阶段。拟议的计划在其中很新颖 在小儿医学创伤性压力框架中接地，并关注增加兄弟姐妹 与癌症相关线索的接触和处理。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社会心理需求，sibaccess有望使我们更近一步 需要为癌症青年兄弟姐妹提供社会心理服务的护理标准。反过来，更好的兄弟姐妹 预计支持将改善兄弟姐妹在整个生命周期内的心理功能，从而减少负面影响 关于家庭的兄弟姐妹调整问题，总体上减少了小儿癌对家庭的燃烧。