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

基本信息

项目摘要

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家庭风险信息传播和合作适应共同风险的社会机制。 我们在几种不同的疾病背景下研究这些过程,代表高度渗透性的遗传疾病以及具有遗传基础的更常见,复杂的疾病。 对来自13个受林奇综合征影响的家庭的80名家庭成员进行的深入访谈(NHGRI方案# 05-HG-N249; PI:Laura Koehly)已被编码,并被用于调查家庭社会结构在癌症家族史、基因检测和咨询、突变状态披露与疾病风险和筛查行为相关的沟通中的作用。此外,我们正在调查遗传风险信息的传播和对已知BRCA 1/2突变家庭妇女的风险适应(NCI方案# 01-C-0009; PI:Jennifer Loud)。 本研究使用彩色生态遗传关系图(CEGRM)来评估研究参与者的沟通和社会支持网络。 目前,已有200名参与者参加了这项研究。 CEGRM评估和心理社会测量在基线和三个年度随访时获得。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妇女、父母和家庭成员。 积极传播信息的人往往是女性一级和二级亲属、受影响的家庭成员以及情感支持和有形援助的提供者。 这些人会主动告诉家人有关家族癌症史和遗传风险的信息,并鼓励家人之间的公开交流。我们的分析还表明,姐妹篇之间的合作支持过程是积极和消极的福祉。姐妹篇之间共享的情感支持资源似乎有利于积极的适应,而姐妹篇之间大量的共享信息资源似乎与增加躯体化暗示传染效应。 最后,我们正在调查基于家族健康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水平策略的发展(NHGRI方案# 07-HG-N140; PI:Laura Koehly)。本研究使用CDC家庭健康软件提供基于参与者家族史的风险信息和基于参与者当前健康行为的行为建议。 我们将使用该软件为德克萨斯州休斯顿地区的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励有关常见复杂疾病的家庭沟通以及合作策略的制定,例如鼓励筛查,以解决这种风险。 我们成功招募了497名参与者进行基线评估(162个家庭),481名参与者完成了1个月的随访评估,461名参与者完成了6个月的随访评估。该项目的制造准备工作目前正在进行中。在与REVEAL团队的合作中,我们也一直在研究关于阿尔茨海默病的APOE基因检测的披露模式,以及这种披露过程与应对遗传风险信息的关系。

项目成果

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Laura Koehly其他文献

Laura Koehly的其他文献

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{{ truncateString('Laura Koehly', 18)}}的其他基金

Outcomes of Education and Counseling for HNPCC Testing
HNPCC 测试的教育和咨询成果
  • 批准号:
    8750656
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Promoting Footwear in Rural Ethiopia
在埃塞俄比亚农村推广鞋类
  • 批准号:
    8948385
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Outcomes of Education and Counseling for HNPCC Testing
HNPCC 测试的教育和咨询成果
  • 批准号:
    7734862
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Methodological Development
方法论发展
  • 批准号:
    10683835
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Methodological Development
方法论发展
  • 批准号:
    10267121
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
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:
    10913905
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
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:
    9572265
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Outcomes of Education and Counseling for HNPCC Testing
HNPCC 测试的教育和咨询成果
  • 批准号:
    7968841
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Outcomes of Education and Counseling for HNPCC Testing
HNPCC 测试的教育和咨询成果
  • 批准号:
    8565517
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:
Methodological Development
方法论发展
  • 批准号:
    9359853
  • 财政年份:
  • 资助金额:
    $ 97.24万
  • 项目类别:

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