Families of Childhood Cancer Survivors

儿童癌症幸存者的家庭

• 批准号: 7059012
• 负责人: Bradley Jay Zebrack
• 金额: $ 8.13万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-09-30 至 2007-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7059012
• 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)

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已经达成共识，儿童癌症是一种“家族疾病”。虽然许多研究都考察了癌症对青少年和年轻的儿童恶性肿瘤幸存者的心理社会影响，但对作为一个单位的家庭生存的长期后果的研究相对较少。目的：通过对癌症幸存者和选定的家庭成员的深入访谈，以及在这些访谈期间对家庭动态的直接和系统的观察，这项研究将考察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必要的背景数据，以促进为儿童癌症患者和幸存者的家庭制定和测试以家庭为重点的心理社会干预措施。设计：符合这项研究条件的个人将从18-39岁的儿童癌症年轻成年幸存者队列中挑选出来，他们参加了最近由NCI资助的一项关于生活质量结果的多点研究。在这里提出的研究中，这些受试者将被要求邀请家庭成员参加在他们家里进行的后续访谈。在大约48个定性的、半结构化的访谈中，我们将询问这些儿童癌症幸存者，并邀请他们的家庭成员讨论儿童癌症如何影响他们的家庭，并指定所需的内容、时机和方法，提供现在可能有帮助和/或在过去的其他时间可能会有帮助的心理社会干预。定性数据的管理和分析将与“扎根理论”办法相对应，因为涉及主题编码和不断比较分析的分析程序将得出数据中的模式和主题，然后可根据概念含义或构思的群组对其进行分类。通过直接观测收集的数据将提供另一种数据来源，用来对结果进行三角测量。意义：这些结果将被用来为后续的研究提供信息，这些研究旨在测试与癌症在家庭中持续和长期影响有关的假说或理论。这些信息也将对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有用。