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 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 five ongoing studies that fall within these aims. 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. 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. 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. 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 published manuscript from this project. 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 description of our evaluation of the workbook within an African American sample was recently published. In response to this evaluation, we are currently developing a community education program that will be pilot tested in collaboration with Georgetown's Office of Minority Health and Health Disparities Research. We successfully transitioned our in-person community education programs to telephone-based education programs; we have successfully recruited 43 participants into the community education program arm of the study. In addition, the workbook was evaluated in rural and urban communities in North Florida; a total of 51 participants were recruited into study. Dissemination efforts are underway. The Families SHARE workbook was also 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; we examined patterns of behavioral encouragement within multigenerational families, finding cultural differences in how families encourage healthy eating. We are now tailoring the workbook for use in community health clinics in rural Nigeria. 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.