The influence of familial social context on risk dissemination and coping

家庭社会背景对风险传播和应对的影响

• 批准号: 8350005
• 负责人: Laura Koehly
• 金额: $ 97.24万
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/8350005
• 关键词: Address; Affect; Alzheimer' s Disease; Area; BRCA1 gene; Behavior; Behavioral; Code; Collaborations; Color; Communication; Complex; Computer software; Data; Development; Disclosure; Disease; Emotional; Environment; Family; Family health status; Family history of; Family member; Feedback; Female; Genetic; Genetic Counseling; Genetic Risk; Genetic screening method; Genomics; Health behavior; Hereditary Disease; Hereditary Malignant Neoplasm; Hereditary Nonpolyposis Colorectal Neoplasms; Household; Individual; Intervention; Interview; Life; Manuscripts; Maps; Measurement; Methodology; Methods; Mexican Americans; Mutation; National Human Genome Research Institute; Network-based; Parents; Participant; Pattern; Personal Satisfaction; Preparation; Process; Protocols documentation; Provider; Psychosocial Assessment and Care; Recommendation; Recording of previous events; Recruitment Activity; Research; Resources; Risk; Role; Screening procedure; Second Degree Relative; Sister; Social Environment; Social Network; Social support; Structure; System; Woman; Work; base; cancer genetics; cancer risk; contagion; coping; disorder risk; follow-up; risk sharing; social

Our current work aims to understand the social mechanisms underlying the dissemination of family risk information and cooperative adaptation to shared risk. We examine these processes across several different disease contexts, representing highly penetrant, genetic disorders as well as more common, complex diseases that have genetic bases. In-depth interviews with 80 family members from 13 families affected by Lynch Syndrome (NHGRI Protocol # 05-HG-N249; PI: Laura Koehly)have been coded and are being used to investigate the role of the familial social structure in communications about family history of cancer, genetic testing and counseling, disclosure of mutation status are associated with the construals of disease risk and screening behaviors. Additionally, we are investigating the dissemination of genetic risk information and adaptation to risk in women from families with known BRCA1/2 mutations(NCI Protocol # 01-C-0009; PI: Jennifer Loud). This research uses the Colored Eco-genetic Relationship Map (CEGRM) to assess the communication and social support networks of study participants. Currently, 200 participants have been recruited into the study. CEGRM assessments and psychosocial measurements are obtained at baseline and at three annual follow-ups. With regards to communications regarding cancer risk, those who gather family risk information tend to be women, parents, and family members who provide emotional support. Those who actively disseminate information tend to be female first- and second-degree relatives, affected family members, and providers of emotional support and tangible assistance. These individuals take it upon themselves to tell family members about the familial cancer history and genetic risk information, as well as encourage open communication among family members. Our analyses also suggest that cooperative support processes among sisters are both positively and negatively associated with well-being. Shared emotional support resources among sisters appears to facilitate positive adaptation, whereas large numbers of shared informational resources among sisters appears to be associated with increased somatization suggesting a contagion effect. Finally, we are investigating the dissemination process for complex disease risk information based on family health history and the development of family level strategies to address this risk (NHGRI Protocol # 07-HG-N140; PI: Laura Koehly). This research uses the CDCs Family Healthware to provide risk information based on participants family history and behavioral recommendations based on participants current health behaviors. We will use this software to provide feedback to participants from Mexican American households in the Houston, TX area and assess how this feedback motivates family communications about common, complex diseases and the development of cooperative strategies, such as encouragement to screen, to address this risk. We successfully recruited 497 participants for baseline assessments (162 households), 481 participants completed the 1-month follow-up assessment and 461 participants had completed the 6-month follow-up assessment. Manuscript preparation for this project is currently underway. In a collaboration with the REVEAL team, we have also been examining patterns of disclosure regarding APOE genetic testing for Alzheimer's disease and how this disclosure process is related to coping with genetic risk information.

我们目前的工作旨在了解传播家庭风险信息的社会机制和对共同风险的合作适应。 我们在几种不同的疾病环境中检查了这些过程，这些过程代表了高度渗透，遗传疾病以及更常见的具有遗传基础的复杂疾病。 已经编码了受Lynch综合征影响的13个家庭的80个家庭成员的深入访谈（NHGRI协议＃05-HG-N249; PI：Laura Koehly），并已被用来调查家族社会结构在有关癌症家族史的沟通中的作用，与癌症的家族史，基因测试，基因测试，基因咨询，披露突变的状态披露和筛查疾病的行为相关联。此外，我们正在研究已知BRCA1/2突变家庭中妇女的遗传风险信息和对风险的传播（NCI方案＃01-C-0009; PI：Jennifer Loud）。 这项研究使用彩色的生态遗传关系图（CEGRM）来评估研究参与者的沟通和社会支持网络。 目前，已有200名参与者被招募到研究中。 CEGRM评估和社会心理测量值是在基线和三年随访时获得的。关于癌症风险的沟通，收集家庭风险信息的人往往是提供情感支持的女性，父母和家庭成员。 那些积极传播信息的人倾向于是女性的一级和二级亲戚，受影响的家庭成员以及情感支持和有形援助的提供者。 这些人会自己告诉家人有关家族癌症史和遗传风险信息的信息，并鼓励家庭成员之间的公开沟通。我们的分析还表明，姐妹之间的合作支持过程既与幸福感，既积极和负相关。姐妹之间共同的情感支持资源似乎有助于积极适应，而姐妹之间的大量共享信息资源似乎与增加的躯体化相关，这表明触发效应。 最后，我们正在研究基于家庭健康历史的复杂疾病风险信息的传播过程，以及解决这种风险的家庭级别策略的发展（NHGRI协议＃07-HG-N140； PI：Laura Koehly）。本研究使用CDCS家庭健康软件根据参与者家族史和基于参与者当前健康行为的行为建议提供风险信息。 我们将使用该软件向德克萨斯州休斯顿市墨西哥裔美国家庭的参与者提供反馈，并评估这种反馈如何激发家庭沟通有关常见，复杂疾病的沟通以及合作策略的发展，例如鼓励筛查，以应对这种风险。 我们成功招募了497名参与者进行基线评估（162户家庭），481名参与者完成了为期1个月的随访评估，461名参与者已经完成了为期6个月的随访评估。目前正在进行该项目的手稿准备。在与揭露团队的合作中，我们还一直在研究有关阿尔茨海默氏病APOE基因检测的披露模式，以及该披露过程与应对遗传风险信息的应对方式。