The influence of familial social context on risk dissemination and coping

National Human Genome Research Institute

Investigators

Linked publications, trials & patents

Abstract

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 five 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 first manuscript, we describe 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. 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 and a second is currently in review. 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. Within the current reporting period, we have one published manuscript from this project. 5) Families SHARE Based on results from Project RAMA, we have 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 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.