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: 10369032
• 负责人: Kristin Ann Long
• 金额: $ 8.81万
• 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 2023-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10369032
• 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; 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; 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; diagnostic criteria; distress tolerance; efficacy evaluation; efficacy trial; feasibility research; improved; intervention effect; meetings; novel; peer; pilot test; 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.

项目总结/摘要 儿童癌症导致家庭系统的扩展中断，这可能会让兄弟姐妹感到 与家人脱节，独自科普与癌症相关的强烈情绪。兄弟姐妹 经常报告高水平的负面情绪和创伤后压力，这可能会干扰他们的 行为功能、人际关系以及上学和集中注意力的能力。成果 对于来自代表性不足的少数群体的兄弟姐妹和那些社会经济地位较低的人来说， 资源照顾兄弟姐妹的心理社会需求的重要性已经在一个以上的文件中得到了证明。 数百项研究，并已被指定为儿科肿瘤学的标准治疗。然而，这一标准 关怀很少得到满足。我们的试点数据突出了家庭对更好的兄弟姐妹支持的愿望，但没有很好的- 针对青年癌症患者的兄弟姐妹制定干预措施。大多数医疗中心不提供兄弟姐妹 项目，以及少数现有的兄弟姐妹干预措施与兄弟姐妹的临床表现不匹配。 此外，大多数儿童癌症的支持计划没有充分考虑文化差异， 家庭对支持性干预措施的目标、内容或形式的偏好。simulation的可能性 由于他们不在医院，获得急需的支持受到进一步限制， 为癌症儿童及其家人制定的计划。这项研究旨在解决这些问题。 在临床实践中的问题，通过开发一种新的文化知情的心理社会干预， 儿科医疗创伤应激框架，通过使用 远程保健方法。具体目标是（1）制定SibACCESS（接受，应对， 沟通，参与和社会支持）计划的基础上创伤为重点的CBT框架和 根据来自英语和西班牙语家庭的不同样本的反馈， 癌症儿童，以及（2）进行SibACCESS计划的试点试验，以评估初步的 干预的可行性和可接受性以及研究程序和材料的可行性， 为未来更大规模的疗效试验做准备。社区利益攸关方（兄弟姐妹、父母、供应商） 为拟议工作的设计和目标做出了贡献，并将继续在所有工作中发挥核心作用。 研究设计、分析、传播和未来方向的阶段。拟议的方案是新颖的， 在儿科医学创伤应激框架和相关的重点增加兄弟姐妹的基础上， 接触和处理癌症相关线索。通过解决兄弟姐妹在护理方面的具体障碍， 针对兄弟姐妹独特的心理社会需求，SibACCESS有望使我们更接近满足 护理标准要求为患有癌症的青年兄弟姐妹提供心理社会服务。反过来，更好的兄弟姐妹 支持有望改善兄弟姐妹一生的心理社会功能，减少负面影响， 家庭的兄弟姐妹适应问题，总体上，减少了儿童癌症对家庭的负担。