The influence of familial social context on risk dissemination and coping

National Human Genome Research Institute

Investigators

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Abstract

Our work aims to understand why some families talk about and act on risk information and others do not. Our previous studies used both qualitative and quantitative methods to investigate how families talk about, experience, and cope with inherited conditions (i.e., type 2 diabetes, heart disease, inherited cancers, sick cell disease; NHGRI Protocol #12-HG-N149). Further, we have also explored how socio-cultural factors influence family communication about disease risk and health history (NHGRI Protocol #07-HG-N140). Finally, during times of unprecedented health concerns and societal change, we longitudinally assessed how social distancing impacted mental health during COIVD-19. All aforementioned studies are closed to enrollment, but open to ongoing data analysis. Through these projects, we observed variations in family health history (FHH) knowledge and health communication pathways within families, noting that family communication is necessary for improving FHH knowledge through information sharing. We also demonstrated that genomic risk assessments, such as family health history (FHH) or through genetics services, can be quite powerful in activating family communication and social support, including emotional support and behavioral encouragement pathways. For example, provision of FHH-based risk assessments to a single family member initiated reciprocal exchange of family risk information between parents and their adult children, which in turn increased FHH knowledge among those aged 18-29 years. Moreover, we showed that these conversations about risk generated new encouragement ties, which were linked to engagement in health promoting behaviors. Families SHARE To build on this work, we initiated a project to develop a FHH toolkit called Families SHARE (Sharing Health Assessments and Risk Evaluation). The goal of the toolkit is to teach families how to evaluate whether they are at increased disease risk based on their FHH and encourage healthy behaviors that help reduce that risk. The Families SHARE toolkit is comprised of three components: a workbook, community education program, and video. The workbook was evaluated in the Washington, DC area and North Florida (NHGRI Protocol #12-HG-0023; PI: Laura Koehly). In response to participant feedback, a community education program was developed and evaluated in collaboration with Georgetown University's Ralph Lauren Center for Cancer Prevention (NHGRI Protocol #000164; PI: Laura Koehly), engaging 50 participants in the study. To further expand the toolkit, a video module was developed and evaluated by 40 English and Spanish speaking participants recruited by Georgetown University's Ralph Lauren Center for Cancer Prevention (NHGRI Protocol # 000953; PI: Koehly). These protocols are closed to recruitment and the data are currently being analyzed. Our evaluation of the workbook demonstrated that the workbook was usable and accepted by the community, with 98% indicating that they were able to use the workbook to evaluate risk, 76% indicating that they shared their risk information with family members, and 48% indicating that they gathered new FHH information from family based on workbook use. Participants pointed to several areas for improvement, including the need for additional resources that support workbook users, such as a community education program. Of the 39 participants completing the post-community education assessments, 97% indicated that the program helped them understand the workbook. Importantly, 62% indicated that they had shared risk information with family members within 3 weeks of the community education program. Qualitative feedback suggested the need for multiple education programs enabling continued reinforcement of key Families SHARE goals. In response, we developed an educational video. More recently, an interactive virtual reality simulation has been developed to help individuals practice family health history conversations with a virtual avatar and build confidence in initiated and engaging in such conversations. This simulation will be used in tandem with the workbook and videos in an upcoming study (NHGRI Protocol #002325). Recruitment for this study will be done in collaboration with Georgetown University's Ralph Lauren Center for Cancer Prevention. 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. Resilience Study During the current reporting period, we also initiated a new study to examine the relationships between societal, community, interpersonal, and individual level factors associated with resilience, and explore how resilience may mitigate the stress experienced by families with kidney disease (NHGRI Protocol # IRB002146). Shortly after recruitment began, the study was closed due to unforeseen circumstances. In total seven participants were consented and enrolled into the study.