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
• 负责人: Laura Koehly
• 金额: $ 73.52万
• 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/9572265
• 关键词: Address; Adolescent; Affect; Area; Assessment tool; BRCA1 gene; Behavior; Behavioral; Centers for Disease Control and Prevention (U.S.); Code; Collaborations; Collection; Color; Communication; Complex; Consent; Data; Data Analyses; Data Collection; Development; Disease; Environment; Evaluation; Family; Family health status; Feedback; Focus Groups; Funding; Future; Genetic; Genetic Risk; Genomics; Health; Health Educators; Health Promotion; Health Sciences; Health behavior; Hereditary Disease; Household; Individual; Information Networks; Inherited; International; Intervention; Interview; Loudness; Malignant Neoplasms; Manuscripts; Maps; Measurement; Medical center; Methodology; Methods; Mexican; Mexican Americans; Mutation; National Human Genome Research Institute; Network-based; Non-Insulin-Dependent Diabetes Mellitus; Paper; Participant; Pathway Analysis; Pediatric Hospitals; Physical activity; Process; Protocols documentation; Publishing; Recommendation; Recording of previous events; Recruitment Activity; Reporting; Research; Risk; Role; Second Degree Relative; Sickle Cell Anemia; Social Environment; Social Network; Social support; South Australia; Surveys; System; Texas; Typology; Universities; Woman; Work; base; contextual factors; coping; disorder risk; experience; falls; follow up assessment; follow-up; meetings; psychosocial; risk sharing; social; tool

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 Children's 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 another paper under review. 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. We have successfully consented 184 participants from 81 families; 128 have completed both the survey and interview, with the remaining 36 currently in the process of completing assessments. 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 CDC's 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 3-month follow-up assessment and 461 participants completed the 10-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 one manuscript from this project in press and one paper currently under review. 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 published. 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. A paper describing this effort has been published and a baseline paper describing the family network systems is under review. 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. A description of these data was recently presented at the annual meeting of the International Network of Social Network Analysis; a manuscript based on this report is currently under review. In addition, we have partnered with collaborators at the University of Texas Health Sciences Center on Project MATCH in which we aim to understand the social, cultural, and genomic factors associated with health behaviors in adolescents of Mexican heritage. One paper examining the role of such factors in physical activity was published during the current reporting period.

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。 我们目前有六项正在进行的研究属于这些目标。 关于高度外显的遗传性疾病，我们正在研究遗传风险信息的传播和对已知BRCA 1/2突变家族中女性的风险适应（NCI方案#01-C-0009; PI：Jennifer Loud）。 本研究使用彩色生态遗传关系地图（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。我们已经完成了对年度随访CEGRM的编码，以供未来分析。 我们继续考虑家庭如何沟通，经验和科普遗传条件。我们已经建立了一个保护方案，允许我们在正在进行的研究中检查这些过程（NHGRI方案#12-HG-N149; PI：Laura Koehly）。 其中一个项目研究了受2型糖尿病影响和有2型糖尿病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学中心的梅勒妮·迈尔斯博士合作进行的。 自开始这项工作以来，我们已成功招募并完成了155项评估。在本报告所述期间，我们发表了一篇论文，另一篇论文正在审查中。 在过去的一年中，我们还与INSIPERT研究团队合作，根据该协议开发了一个项目，该项目研究了受镰状细胞病影响的家庭周围的社会背景因素。我们成功地同意了来自81个家庭的184名参与者; 128人完成了调查和访谈，其余36人目前正在完成评估。 2010年，我们完成了拉马项目的招募和评估。 在这项研究中，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）。这项研究使用CDC的家庭健康软件提供基于参与者家庭健康史的风险信息和基于参与者当前健康行为的行为建议。 我们使用家庭健康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风险反馈。 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3个月的随访评估，461名参与者完成了10个月的随访评估。最近的努力集中在分析这些数据，以确定如何基于家族史的风险反馈激励家庭沟通常见的，复杂的疾病和合作策略的发展，如鼓励屏幕，以解决这一风险。 在本报告所述期间，我们有一份该项目的手稿正在付印，一份文件正在审查中。 根据拉马项目的结果，我们已经开始开发一种名为家庭共享（共享健康评估和风险评估）的家庭健康史评估工具。 预计家庭基因组学健康教育工作者将使用该工具向其一级和二级亲属传播家庭风险信息，并鼓励降低风险的行为。根据我们对该工具的评估，其中包括对85名参与者和三个焦点小组的单独访谈，我们最终确定了工作簿内容（NHGRI方案#12-HG-N 023; PI：Laura Koehly）。最近出版了一份描述这一过程的手稿。该工作手册目前正用于由澳大利亚研究理事会资助并由南澳癌症理事会共同赞助的以家庭为基础的家庭健康史倡议;该项目的数据收集工作已于2014年完成。一份介绍这一努力的文件已经发表，一份介绍家庭网络系统的基线文件正在审查中。 我们的研究提供的证据表明，家庭是一个社会背景下，基于社会网络的干预措施可能是特别有效的激励基因组风险信息的传播和参与家庭的合作方法，以促进积极适应疾病风险。然而，对交流卫生信息的其他社会领域知之甚少，而这些信息可能会在基于网络的干预措施中发挥作用。 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，以确定可用于定制健康促进干预措施的社交网络类型。最近在国际社会网络分析网年会上介绍了这些数据的说明;目前正在审查根据这份报告编写的一份草稿。 此外，我们还与德克萨斯大学健康科学中心的合作者合作开展了MATCH项目，我们的目标是了解与墨西哥血统青少年健康行为相关的社会、文化和基因组因素。 在本报告所述期间，发表了一份研究这些因素在体力活动中的作用的文件。