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The Role of the Family Genetics Health Educator in Influencing Health Promoting Behaviors

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City:   Bethesda
State:   Maryland
Zip Code:   20892
Conditions:   Diabetes - Cancer - Heart Disease
Purpose:   Background: - Family-based approaches to reduce disease risk and promote healthy behaviors may be better than targeting individuals. Risk assessments based on family health history may help educate families on disease risks and encourage them to change physical activity and food choices. Specifically, researchers want to better understand the role of mothers in teaching healthy behaviors to their families. Objectives: - To determine mothers' influence on diet and health-related behaviors. - To study an intervention tool that connects family health history and disease risk. Eligibility: - 18 years of age who have at least one child living at home. Design: - Participants will complete a survey over the phone or online. The survey will take 30 to 40 minutes to complete. The survey will collect family health history on heart disease, diabetes, colorectal cancer, and breast cancer. - Researchers will give participants a Family Health Package (FHP). The FHP will provide information on family health history and disease risk. It will also recommend behaviors that can reduce health risks. - Two weeks after sending the FHP, participants will complete an online or phone survey about the FHP materials. - Some participants will be invited to focus groups. The focus groups will explore diet and health behavior. They will look at food purchasing and preparation and meal sharing. The groups will also discuss attitudes toward healthy eating and physical activity. Each focus group will last 1 to 2 hours.
Study Summary:   Lifestyle behaviors, such as diet and physical activity, have been linked to the development of a number of diseases, including cancer, diabetes, and heart disease. Adopting a healthy diet and other preventative health practices are effective ways to reduce associated diseases. However, cancer, diabetes, and heart disease are etiologically complex with multiple risk factors (e.g., genetic, environmental, lifestyle) that tend to cluster in families. Thus, families are an important social context for intervention and lifestyle-focused disease prevention. Our previous research indicates that intergenerational encouragement can motivate behavior change and parents and women tend to be natural encouragers of health behaviors. Therefore, a mixed-method pilot study will be conducted to explore how dietary habits and healthy behaviors are transmitted across family generations and the motivational influence of family health history regarding diseases associated with overweight and diet on improving health behaviors. This pilot study will also assess participants' comprehension of an intervention tool outlining family health history and disease risk assessment that will be used in a larger intervention study. Participants for the paper-based Family Health Package (FHP) Evaluation Phase will be recruited from an existing database developed by the Immersive Virtual Environment Testing Area (IVETA) within the Social and Behavioral Research Branch, NHGRI, consisting of mothers in the Washington, DC area, and through local advertisement and posting on clinicaltrials.gov. Participants will complete a survey interview, providing us with a detailed family health history. From this information, we will create a paper-based FHP that will be sent to participants, consisting of a pedigree, disease risk algorithms, and health guidelines. Participants will be invited to complete a follow-up survey interview, and focus groups will be conducted with a subset of participants. Two initial focus groups will provide feedback on the feasibility and acceptability of the FHP materials. After incorporating revisions, an additional focus group will evaluate the FHP materials. All of the focus groups will also explore diet and health behavior through semi-structured questions. Thematic analysis will identify factors such as influences on health behaviors across generations and the potential impact parents have on initiating and maintaining food choices within their household and the influence of their family of origin on these choices. Additional evaluations may be conducted, as necessary, to improve the FHP and reach diverse populations. The paper-based version of the FHP will be translated into an electronic version, the Family Health ePortal (FHeP). Participants for the electronic Family Health ePortal (FHeP) Evaluation Phase will be recruited from the general population through local advertisement and posting on clinicaltrials.gov. Eligible participants will be consented and invited to access the FHeP. The initial FHeP Evaluation Phase participants will access the FHeP individually to provide feedback on the feasibility and acceptability of the FHeP materials through surveys and a semi-structured interview. After incorporating revisions, subsequent participants will be asked to invite their family members to access the FHeP and evaluate the FHeP materials. FHeP participants will provide demographic, diet, and health behavior information through pre- and post-test surveys as well as survey items within the FHeP. Additional evaluation waves may be conducted, as necessary, to improve the FHeP and increase reach to diverse populations. We anticipate that the outcomes of the pilot study will 1) provide us with an effective intervention tool for health education and minimizing disease risk within the family, and 2) inform future intervention research. Further study can be directed toward providing mothers with appropriate tools to act as family genetics health educators in order to disseminate disease risk information and encourage health promoting behaviors.
Criteria:   - INCLUSION CRITERIA: FHP Evaluation Phase Eligible participants for the FHP Evaluation Phase will be invited to participate in the study if they meet the following criteria: 1. have at least one child 2. be able to read and speak English 3. indicate a willingness to participate in a focus group. FHeP Evaluation Phase Individual Evaluation Eligible participants will be invited to participate in the study if they meet the following criteria: 1. able to read, write, and speak English 2. able to visit the Clinical Center on the Bethesda, MD main campus for one visit 3. adult 4. demonstrate basic computer literacy EXCLUSION CRITERIA: NHGRI employees and those who are adopted will be excluded from the study. Family Evaluation Eligibility for the family evaluation of the FHeP will be determined following the individual evaluation.
NCT ID:   NCT01498276
Primary Contact:   Principal Investigator
Laura M. Koehly, Ph.D.
National Human Genome Research Institute (NHGRI)

Andrea F Goergen
Phone: (301) 443-8185
Email: goergena@mail.nih.gov
Backup Contact:   Email: koehlyl@mail.nih.gov
Laura M. Koehly, Ph.D.
Phone: (301) 451-3999
Location Contact:   Bethesda, Maryland 20892
United States

Andrea Goergen
Phone: 301-443-8185
Email: goergena@mail.nih.gov

Site Status: Recruiting

Data Source:   ClinicalTrials.gov
Date Processed:   June 18, 2013
Modifications to this listing:   Only selected fields are shown, please use the link below to view all information about this clinical trial.
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