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 just 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 113 assessments since beginning this effort. During this past year, we have also partnered with the ClinSeq study team to develop a project under the Umbrella Protocol that examines the social contextual factors that surround families as they communicate about results obtained through sequencing technologies. Recruitment and enrollment for this project will begin during the next reporting period. 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, two manuscripts are in press, and four manuscripts 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). 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. 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 an initial web-based version of the Families SHARE tool. We just completed an evaluation of the tool based on 50 participants. The results of which will inform the next phase of tool development. In January, 2012, we began to examine caregiving as a family-level process within families affected by Alzheimers disease (AD;NHGRI Protocol #12-HG-N022;PI: Laura Koehly). Within this project we are investigating whether caregivers perceived risk of developing AD in their lifetime influences their engagement in and psychological response to the caregiving process. We successfully recruited and completed assessments on 73 family caregivers and 43 formal caregivers. Currently, we are processing obtained data for analysis and will focus efforts over the next year on disseminating results from this study. 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 the required OMB application and PIA for this project.

Project Start
Project End
Budget Start
Budget End
Support Year
8
Fiscal Year
2013
Total Cost
$1,311,016
Indirect Cost
Name
National Human Genome Research Institute
Department
Type
DUNS #
City
State
Country
Zip Code
Hovick, Shelly R; Wilkinson, Anna V; Ashida, Sato et al. (2014) The impact of personalized risk feedback on Mexican Americans' perceived risk for heart disease and diabetes. Health Educ Res 29:222-34
Ashida, Sato; Palmquist, Aunchalee E L; Basen-Engquist, Karen et al. (2009) Changes in female support network systems and adaptation after breast cancer diagnosis: differences between older and younger patients. Gerontologist 49:549-59
Koehly, Laura M; Loscalzo, Aunchalee (2009) Adolescent obesity and social networks. Prev Chronic Dis 6:A99