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. 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 continue to code the annual follow-up CEGRMs for future analyses. Additionally, during this reporting period, we published one paper from this project examining the characteristics of and reasons that members block the flow of genetic risk information within the family system. 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 6 quantitative and 4 qualitative interview assessments since beginning this effort. 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 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 had 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 four manuscripts from this project and we currently have four manuscripts under review. Based on results from Project RAMA, we have begun to develop a family health history assessment tool. 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. Over the course of the reporting period, we have developed the Families SHARE workbook and conducted a formative evaluation of the tool with 85 mothers (NHGRI Protocol #12-HG-N023;PI: Laura Koehly). Fourteen of these mothers also participated in three focus groups discussing the packet and suggested improvements. We are currently finalizing the workbooks contents based on the suggestions of our study participants. The workbook is 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. Additionally, we anticipate using the workbook in a similar effort targeting an under-resourced community in Pittsburgh, PA. In January, 2012, we began to examine the 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 examining whether caregivers perceived risk of developing AD in their lifetime influences their engagement in and psychological response to the caregiving process. To date we have 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.

Project Start
Project End
Budget Start
Budget End
Support Year
7
Fiscal Year
2012
Total Cost
$761,502
Indirect Cost
Name
National Human Genome Research Institute
Department
Type
DUNS #
City
State
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Hooker, Gillian W; Umstead, Kendall L; Lewis, Katie L et al. (2017) Engagement and communication among participants in the ClinSeq Genomic Sequencing Study. Genet Med 19:98-103
Lin, Jielu; Marcum, Christopher S; Myers, Melanie F et al. (2017) Put the Family Back in Family Health History: A Multiple-Informant Approach. Am J Prev Med 52:640-644
Wilkinson, Anna V; Miller, Erline E; Koehly, Laura M et al. (2017) Correlates of Physical Activity Differ by Sex and Country of Birth Among Mexican-Heritage Youth. J Immigr Minor Health 19:246-253
de Heer, Hendrik Dirk; de la Haye, Kayla; Skapinsky, Kaley et al. (2016) Let's Move Together: A Randomized Trial of the Impact of Family Health History on Encouragement and Co-Engagement in Physical Activity of Mexican-Origin Parents and Their Children. Health Educ Behav :
Wilson, Carlene J; de la Haye, Kayla; Coveney, John et al. (2016) 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. BMC Public Health 16:965
Goergen, Andrea F; Ashida, Sato; Skapinsky, Kaley et al. (2016) What You Don't Know: Improving Family Health History Knowledge among Multigenerational Families of Mexican Origin. Public Health Genomics 19:93-101
Koehly, Laura M; Morris, Bronwyn A; Skapinsky, Kaley et al. (2015) Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer. BMC Public Health 15:1120
Marcum, Christopher Steven; Koehly, Laura M (2015) Inter-generational contact from a network perspective. Adv Life Course Res 24:10-20
Bigman, Galya; Rajesh, Vandita; Koehly, Laura M et al. (2015) Family Cohesion and Moderate-to-Vigorous Physical Activity Among Mexican Origin Adolescents: A Longitudinal Perspective. J Phys Act Health 12:1023-30
Myers, Melanie F; Fernandes, Sara L; Arduser, Lora et al. (2015) Talking About Type 2 Diabetes: Family Communication From the Perspective of At-Risk Relatives. Diabetes Educ 41:716-28

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