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
• 负责人: Laura Koehly
• 金额: $ 77.76万
• 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/10913905
• 关键词: Address; Affect; Age; Area; Assessment tool; Behavior; COVID-19; COVID-19 pandemic; Clinic; Collaborations; Communication; Community Health; Community Health Education; Complex; Consumption; Data; Data Collection; Depressed mood; Development; Disease; Education; Educational process of instructing; Ethnic Origin; Evaluation; Family; Family health status; Feedback; Female; Florida; Funding; Genetic Diseases; Goals; Health Disparities Research; Helping Behavior; Hereditary Disease; Hispanic; Hispanic Populations; Household; Income; Individual; Inherited; International; Intervention; Longitudinal Surveys; Malignant Neoplasms; Manuscripts; Medical center; Mental Health; Mexican Americans; National Human Genome Research Institute; National Institute of Drug Abuse; Network-based; Nigeria; Non-Insulin-Dependent Diabetes Mellitus; Participant; Pattern; Pediatric Hospitals; Pennsylvania; Persons; Phase; Populations at Risk; Process; Protocols documentation; Publications; Publishing; Race; Recording of previous events; Reporting; Research; Rheumatoid Arthritis; Risk; Risk Reduction; Rural; Series; Sickle Cell Anemia; Social Distance; Social Environment; South Australia; Subgroup; Surveys; Testing; Universities; Washington; Well in self; Work; contextual factors; coping; coronavirus disease; design; diaries; disorder risk; experience; follow up assessment; health assessment; health communication; health service use; minority health; minority health disparity; pandemic disease; pilot test; programs; recruit; saliva sample; social; tool; video module

Our current work aims to understand why some families talk about and act on risk information and others do not. To examine these processes, we currently have six ongoing studies that focus on different genetic diseases and disorders: 1) COVID-19 Study In collaboration with Dr. Philip Shaw, NHGRI, Dr. Brenda Curtis, NIDA, and Dr. Lyle Ungar, University of Pennsylvania, we conducted a longitudinal survey examining the impact of social distancing on mental health during the COVID-19 pandemic. We successfully recruited 1,719 participants, approximately 50% of who were female, 33% white, 33% black, and 33% Hispanic. Participants completed a monthly assessment for 6 consecutive months, with a series of 21 day daily diary assessments completed between Month 1 and Month 2. In our initial publications, we describe 1) how fluctuations in COVID worry are associated with engagement with the media, describing a cyclical pattern in which increased worry leads to increased media consumption, and 2) intra-individual change in mental wellbeing during the pandemic immediately following the killing of George Floyd and age, specifically focusing on whether the change in sadness varies between subgroups defined by race, ethnicity, and income. 2) Type 2 Diabetes Study (Umbrella Protocol) We continue to consider how families talk 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 of these projects examines the relational processes within families affected by and at risk of Type 2 Diabetes. 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. 3) Sickle Cell Disease Study (Umbrella Protocol) Through a partnership with the INSIGHTS study team under the Umbrella Protocol we examine the social contextual factors that surround families affected by Sickle Cell Disease. We have successfully recruited 179 participants from 84 families. This project is currently closed to recruitment; one manuscript resulting from this collaboration was published during the reporting period. 4) Project RAMA In 2010 we completed recruitment and assessment on Project RAMA. In this study, we investigate the dissemination process for complex disease risk information based on family health history and the development of family strategies to address this risk (NHGRI Protocol #07-HG-N140; PI: Laura Koehly). We used the CDC's Family Healthware to provide risk feedback to participants from Mexican American households in the Houston, TX area. We successfully had 461 participants complete 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. 5) Families SHARE Based on results from Project RAMA, we developed a family health history assessment tool called Families SHARE (Sharing Health Assessments and Risk Evaluation). The goal of the tool is to teach families how to calculate their risk of disease and encourage healthy behaviors that help reduce that risk. The tool was evaluated in the Washington, DC area and North Florida (NHGRI Protocol #12-HG-0023; PI: Laura Koehly) and later tested during community education programs in collaboration with Georgetown University's Office of Minority Health and Health Disparities Research (NHGRI Protocol #000164; PI: Laura Koehly). During this phase of the study, 75 participants were successfully recruited. Additionally, the collaboration with Georgetown University expanded with the development of an educational video module, which was designed as a complementary tool for use alongside the Families SHARE workbook. The video modules are currently being pilot tested in English and Spanish (NHGRI Protocol #000953; PI: Laura Koehly); during the current reporting period, 28 participants have successfully completed the study. Finally, the Families SHARE workbook is being used internationally. The workbook was used in a family health history initiative funded by the Australian Research Council and co-sponsored by the Cancer Council of South Australia and has been tailored for use in community health clinics in rural Nigeria. 6) Rheumatoid Arthritis in Hispanics During the current reporting period, we began data collection for the Rheumatoid Arthritis (RA) in Hispanics Study (NHGRI Protocol # 000912; PI: Jielu Lin). The goal of the study is to identify the interpersonal mechanisms underlying RA-related health communication and health service use among Hispanic families. Participants are asked to complete a survey and provide a saliva sample. During the current reporting period, 106 have completed surveys and 62 have provided saliva samples.

我们目前的工作旨在理解为什么一些家庭谈论风险信息并采取行动，而另一些家庭则不这样做。为了检查这些过程，我们目前有六项正在进行的研究，重点是不同的遗传疾病和障碍： 1)新冠肺炎学习 我们与美国国立卫生研究院的菲利普·肖博士、美国国家开发协会的布伦达·柯蒂斯博士和宾夕法尼亚大学的莱尔·昂加博士合作，进行了一项纵向调查，考察在新冠肺炎大流行期间社会距离对心理健康的影响。我们成功招募了1719名参与者，其中大约50%是女性，33%是白人，33%是黑人，33%是西班牙裔。参与者连续6个月完成每月评估，在第1个月到第2个月之间完成了一系列21天的每日日记评估。在我们最初的出版物中，我们描述了1)COVID担忧的波动如何与与媒体的接触相关，描述了一种周期性模式，在这种模式中，更多的担忧会导致媒体消费的增加，2)在乔治·弗洛伊德被杀后紧随其后的大流行期间，个人精神健康的变化，特别是关注悲伤的变化是否在种族、民族和收入定义的子组之间变化。 2)2型糖尿病研究(保护伞方案) 我们继续考虑家庭如何谈论、体验和应对遗传性疾病。我们已经建立了一个保护伞协议，允许我们在正在进行的研究中检查这些过程(NHGRI协议#12-HG-N149；PI：Laura Koehly)。其中一个项目调查了受2型糖尿病影响和有患2型糖尿病风险的家庭内部的关系过程。自开始这项工作以来，我们与辛辛那提儿童医院医疗中心的Melanie Myers博士合作，成功地招募并完成了155项评估。 3)镰状细胞病研究(伞状议定书) 通过与伞状议定书下的洞察研究小组建立伙伴关系，我们研究了受镰刀细胞病影响的家庭周围的社会背景因素。我们已经成功招募了来自84个家庭的179名参与者。该项目目前已停止招聘；在本报告所述期间出版了一份由这种合作产生的手稿。 4)拉玛计划 2010年，我们完成了拉玛项目的招募和评估。在这项研究中，我们调查了基于家庭健康史的复杂疾病风险信息的传播过程，以及应对这种风险的家庭策略的发展(NHGRI议定书#07-HG-N140；PI：Laura Koehly)。我们使用疾控中心的家庭健康软件向德克萨斯州休斯敦地区墨西哥裔美国家庭的参与者提供风险反馈。我们成功地让461名参与者完成了为期10个月的跟踪评估。最近的努力集中在分析这些数据，以确定基于家族史的风险反馈如何激励家庭就常见、复杂的疾病进行沟通，并制定合作战略，如鼓励筛查，以应对这种风险。 5)家庭共享 根据RAMA项目的结果，我们开发了一个家庭健康史评估工具，称为家庭共享(共享健康评估和风险评估)。该工具的目标是教家庭如何计算他们的疾病风险，并鼓励健康的行为，以帮助降低这种风险。该工具在华盛顿特区和北佛罗里达地区进行了评估(NHGRI协议#12-HG-0023；PI：Laura Koehly)，后来在与乔治敦大学少数民族健康和健康差距研究办公室合作的社区教育计划中进行了测试(NHGRI协议#000164；PI：Laura Koehly)。在这一阶段的研究中，成功招募了75名参与者。 此外，与乔治城大学的合作扩大了，开发了一个教育视频模块，作为与家庭分享工作簿一起使用的补充工具。目前正在试行英语和西班牙语视频模块(NHGRI#000953号议定书；PI：Laura Koehly)；在本报告所述期间，28名参与者成功完成了这项研究。最后，家庭共享工作簿正在国际上使用。该手册用于由澳大利亚研究理事会资助、南澳大利亚州癌症理事会共同赞助的家庭健康史倡议，并为尼日利亚农村的社区卫生诊所量身定做。 6)西班牙裔的类风湿性关节炎 在本报告所述期间，我们开始在拉美裔研究中收集类风湿性关节炎(RA)的数据(NHGRI方案#000912；PI：杰鲁林)。这项研究的目的是确定西班牙裔家庭中与RA相关的健康沟通和健康服务使用背后的人际机制。参与者被要求完成一项调查并提供唾液样本。在本报告所述期间，106人完成了调查，62人提供了唾液样本。

项目成果

Life under stay-at-home orders: a panel study of change in social interaction and emotional wellbeing among older Americans during COVID-19 pandemic.

• DOI: 10.1186/s12889-022-14103-x
• 发表时间: 2022-09-20
• 期刊: BMC public health
• 影响因子: 4.5

One social network, two perspectives: Social networks of people with Down syndrome based on self-reports and proxy reports.

一个社交网络，两种视角：基于自我报告和代理报告的唐氏综合症患者的社交网络。

• DOI: 10.1111/jar.12736
• 发表时间: 2020
• 期刊: Journal of applied research in intellectual disabilities : JARID
• 作者: Roll,AnneE;Koehly,LauraM
• 通讯作者: Koehly,LauraM

Inter-generational contact from a network perspective.

• DOI: 10.1016/j.alcr.2015.04.001
• 发表时间: 2015-06
• 期刊: ADVANCES IN LIFE COURSE RESEARCH
• 影响因子: 3.4
• 作者: Marcum, Christopher Steven;Koehly, Laura M.
• 通讯作者: Koehly, Laura M.

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans.

• DOI: 10.1159/000517309
• 发表时间: 2021
• 期刊: PUBLIC HEALTH GENOMICS
• 影响因子: 1.7
• 作者: de la Haye, Kayla;Whitted, Calandra;Koehly, Laura M.
• 通讯作者: Koehly, Laura M.

Protocol for a randomized controlled trial testing the impact of feedback on familial risk of chronic diseases on family-level intentions to participate in preventive lifestyle behaviors.

• DOI: 10.1186/s12889-016-3623-7
• 发表时间: 2016-09-13
• 期刊: BMC public health
• 影响因子: 4.5
• 作者: Wilson CJ;de la Haye K;Coveney J;Hughes DL;Hutchinson A;Miller C;Prichard I;Ward P;Koehly LM
• 通讯作者: Koehly LM