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

批准号：
9152731
负责人：
Laura Koehly
金额：
$ 83.1万
依托单位：
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
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/9152731
关键词：
Address Adult Affect Area BRCA1 gene Behavior Behavioral Child Code Collaborations Collection Color Communication Complex Data Data Analyses Data Collection Development Disease Environment Evaluation Family Family health status Family member Feedback Focus Groups Funding Future Genetic Genetic Risk Genomics Health Health Educators Health Promotion Health behavior Hereditary Disease Hospitals Household Individual Inherited Intervention Interview Life Malignant Neoplasms Manuscripts Maps Measurement Medical center Methodology Methods Mexican Americans Mutation National Human Genome Research Institute Network-based Non-Insulin-Dependent Diabetes Mellitus Online Systems Paper Participant Preparation Process Protocols documentation Psychosocial Assessment and Care Publishing Recommendation Recording of previous events Recruitment Activity Reporting Research Risk Risk Assessment Role Second Degree Relative Sickle Cell Anemia Social Environment Social Network Social support South Australia Surveys System Typology Woman Work base contextual factors coping disorder risk experience falls follow-up risk sharing social tool

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. We currently have six ongoing studies that fall within these aims. With respect to highly penetrant genetic disorders, 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 were obtained at baseline and at three annual follow-ups. We have completed coding the annual follow-up CEGRMs for future analyses. We continue to consider how families communicate about, experience, and cope with inherited conditions. We have established an Umbrella Protocol that allows us to examine these processes in ongoing studies (NHGRI Protocol #12-HG-N149; PI: Laura Koehly). One such project examines these relational processes within families affected by and at risk of Type 2 Diabetes. This research is conducted in collaboration with Dr. Melanie Myers of Cincinnati Childrens Hospital Medical Center. We have successfully recruited and completed 155 assessments since beginning this effort. During the reporting period, we have one manuscript that has been published and two papers in progress. During this past year, we have also partnered with the INSIGHTS study team to develop a project under this protocol that examines the social contextual factors that surround families affected by Sickle Cell Disease. The survey for our INSIGHTS partnership has been completed; participants are currently being referred into our substudy; we have successfully recruited and interviewed 11 participants from 9 families. In 2010 we completed recruitment and assessment on Project RAMA. In this study, 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 health history and behavioral recommendations based on participants current health behaviors. We used Family Healthware to provide risk feedback to participants from Mexican American households in the Houston, TX area. We successfully recruited 497 participants for baseline assessments (162 households), 481 participants completed the 1-month follow-up assessment and 461 participants completed the 6-month follow-up assessment. Recent efforts have focused on analyzing these data to identify how family history based risk feedback motivates family communications about common, complex diseases and the development of cooperative strategies, such as encouragement to screen, to address this risk. Within the current reporting period, we have published two manuscripts from this project, three are under review, and two are in preparation. Based on results from Project RAMA, we have begun to develop a family health history assessment tool called Families SHARE (Sharing Health Assessments and Risk Evaluation). It is anticipated that this tool will be used by a family genomics health educator to disseminate family risk information to their first and second degree relatives and encourage risk reducing behaviors. Based on our evaluation of the tool, which included individual interviews with 85 participants and three focus groups, we have finalized the workbook contents (NHGRI Protocol #12-HG-N023; PI: Laura Koehly). A manuscript describing this process has recently been completed. The workbook is currently being used in a family-based family health history initiative funded by the Australian Research Council and co-sponsored by the Cancer Council of South Australia; data collection on this project was completed in 2014. One consistent piece of feedback received during the evaluation was a recommended for the tool to be available online. Thus, during the current reporting period, we have developed web-based version of the Families SHARE tool that allows family members to work collectively within the online environment to gather and disseminate family health history information. Our research has provided evidence that families are a social context for which social network based interventions may be particularly effective in motivating the dissemination of genomic risk information and engaging families in cooperative approaches to facilitate positive adaptation to disease risk. However, not much is known about other social spheres in which health information is exchanged that may be leveraged in network-based interventions. To this end, we have developed an assessment tool to be used for large scale collection of social network information from participants that will identify social network typologies that might be used to tailor health promotion interventions. During the current reporting period we have completed data collection - assessing the social network systems of approximately 1800 adults.

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。目前，我们正在进行的六项研究属于这些目标。关于高度渗透的遗传疾病，我们正在研究遗传风险信息的传播，并适应来自已知BRCA1/2突变家庭的妇女（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。在基线和三年的随访中获得了CEGRM评估和社会心理测量。我们已经完成了编码年度后续CEGRM，以进行将来的分析。我们继续考虑家庭如何沟通，经验并应对继承条件。我们已经建立了一个伞形协议，该协议使我们能够在正在进行的研究中检查这些过程（NHGRI协议＃12-HG-N149; PI：Laura Koehly）。一个这样的项目研究了受2型糖尿病风险和风险的家庭中的这些关系过程。这项研究是与辛辛那提儿童医院医疗中心的Melanie Myers博士合作进行的。自从开始这项工作以来，我们已经成功招募并完成了155次评估。在报告期间，我们有一份已发表的手稿，正在进行两篇论文。在过去的一年中，我们还与Insights研究团队合作，根据该协议开发了一个项目，该项目研究了围绕受镰状细胞病影响的家庭的社会背景因素。我们的见解合作伙伴关系的调查已经完成；参与者目前正在转介我们的物质；我们已经成功招募并采访了来自9个家庭的11位参与者。 2010年，我们完成了Rama项目的招聘和评估。在这项研究中，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，并开发了解决此风险的家庭级别策略（NHGRI协议＃07-HG-N140; PI：Laura Koehly）。该研究使用CDCS家庭健康软件根据参与者的家庭健康历史和行为建议提供风险信息，并根据参与者当前的健康行为。我们使用家庭健康软件为德克萨斯州休斯顿市墨西哥裔美国家庭的参与者提供风险反馈。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名参与者完成了为期6个月的随访评估。最近的努力集中在分析这些数据上，以确定基于家族史的风险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。在当前的报告期内，我们已经发布了该项目的两份手稿，其中三个正在审查中，还有两个正在准备。根据RAMA项目的结果，我们已经开始开发一种名为家庭共享的家庭健康历史评估工具（共享健康评估和风险评估）。可以预期，家庭基因组健康教育者将使用该工具将家庭风险信息传播给其一级和二级亲戚，并鼓励降低风险降低行为。根据我们对工具的评估，包括对85名参与者和三个焦点小组的个人访谈，我们完成了工作簿内容（NHGRI协议＃12-HG-N023; PI：Laura Koehly）。描述此过程的手稿最近已经完成。该工作簿目前正在由澳大利亚研究委员会资助并由南澳大利亚癌症委员会共同赞助的一项家庭健康历史计划中使用。该项目的数据收集于2014年完成。建议在在线上获得该工具的评估期间收到的一致反馈。因此，在当前的报告期间，我们开发了基于网络的家庭共享工具，该工具使家庭成员可以在在线环境中共同工作以收集和传播家庭健康历史信息。我们的研究提供了证据表明，家庭是一种社会环境，基于社交网络的干预措施可能特别有效地激励基因组风险信息传播，并吸引家庭参与合作方法，以促进对疾病风险的积极适应。但是，对于在基于网络的干预措施中交换健康信息的其他社会领域尚不了解。为此，我们开发了一种评估工具，用于从参与者那里大规模收集社交网络信息，这些信息将确定可能用于量身定制健康促进干预措施的社交网络类型。在当前的报告期内，我们已经完成了数据收集 - 评估了约1800名成年人的社交网络系统。