Families of Childhood Cancer Survivors

儿童癌症幸存者的家庭

基本信息

批准号：
7127611
负责人：
Bradley Jay Zebrack
金额：
$ 7.96万
依托单位：
UNIVERSITY OF SOUTHERN CALIFORNIA
依托单位国家：
美国
项目类别：
财政年份：
2005
资助国家：
美国
起止时间：
2005-09-30 至 2008-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7127611
关键词：
behavior test behavioral /social science research tag clinical research data collection family structure /dynamics family therapy functional ability human subject interview longitudinal human study pediatric neoplasm /cancer psychological aspect of cancer social psychology therapy design /development young adult human (21-34)

项目摘要

DESCRIPTION (provided by applicant): There is ready agreement among researchers and clinicians that childhood cancer is a "family disease." Whereas numerous studies have examined the psychosocial effects of cancer on adolescent and young adult survivors of pediatric malignancies, there is relatively little research on the long-term consequences of survivorship for the family as a unit. PURPOSE: Through in-depth interviews with cancer survivors and select family members, and through direct and systematic observation of family dynamics during these interviews, this research will examine past and current effects of cancer on the entire family system. The intent of this work is to gather needed background data that will facilitate the future development and testing of family-focused psychosocial interventions for families of childhood cancer patients and survivors. DESIGN: Individuals eligible for this study will be drawn from a cohort of 18-39 year old young adult survivors of childhood cancer who participated in a recent NCI-funded multi-site study of quality of life outcomes. For the study proposed here, these subjects will be asked to invite family members to participate in follow-up interviews conducted at their homes. In approximately 48 qualitative, semi-structured interviews we will ask these childhood cancer survivors and invited family members to discuss how childhood cancer has affected their family, and to specify desired content, timing and methods of delivering psychosocial interventions that might be helpful now and/or would have been helpful at some other time in the past. The management and analysis of qualitative data will correspond with a "grounded theory" approach in that analytic procedures involving thematic coding and constant comparative analyses will derive patterns and themes within the data, which then may be categorized according to clusters of conceptual meanings or constructs. Data collected by means of direct observation will provide an alternative source of data by which to triangulate findings. SIGNIFICANCE: The results will be used to inform subsequent investigations intending to test hypotheses or theories related to the on-going and long-term impact of cancer in the family. The information also will be useful to investigators and clinicians interested in developing and testing family support interventions via pilot studies or randomized clinical trials.

描述（由申请人提供）：研究人员和临床医生一致认为，儿童癌症是一种“家庭疾病”。尽管大量研究探讨了癌症对儿科恶性肿瘤青少年和年轻成人幸存者的心理社会影响，但关于幸存者作为一个整体对家庭的长期影响的研究相对较少。目的：通过对癌症幸存者和选定的家庭成员进行深入访谈，并通过在访谈过程中对家庭动态进行直接和系统的观察，本研究将探讨癌症过去和现在对整个家庭系统的影响。这项工作的目的是收集所需的背景数据，以促进未来针对儿童癌症患者和幸存者家庭的以家庭为中心的心理社会干预措施的开发和测试。设计：符合本研究资格的个体将从一组 18-39 岁的儿童癌症年轻幸存者中抽取，他们参加了最近由 NCI 资助的一项关于生活质量结果的多中心研究。对于此处提出的研究，这些受试者将被要求邀请家庭成员参加在他们家中进行的后续访谈。在大约 48 次定性、半结构化访谈中，我们将询问这些儿童癌症幸存者并邀请家庭成员讨论儿童癌症如何影响他们的家庭，并具体说明提供现在可能有帮助的心理社会干预措施的所需内容、时间和方法。或者在过去的其他时间会有帮助。定性数据的管理和分析将与“扎根理论”方法相对应，因为涉及主题编码和持续比较分析的分析程序将得出数据中的模式和主题，然后可以根据概念意义或结构的集群对其进行分类。通过直接观察收集的数据将为三角测量结果提供替代数据来源。意义：结果将用于为后续调查提供信息，这些调查旨在检验与癌症对家庭的持续和长期影响相关的假设或理论。这些信息对于有兴趣通过试点研究或随机临床试验开发和测试家庭支持干预措施的研究人员和临床医生也将很有用。