Family Genetics Health Education and Healthy Behaviors

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 preventive 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. We have completed an
evaluation of the FHP within a predominantly under-resourced, African American community.
While the FHP was well received, participants suggested a need for an in-person,
community-based, family history health education program centered around concepts presented
in the FHP. To that end, we will develop and pilot test a health education program to
introduce the FHP to the community. 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 these evaluations 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 family
members with appropriate tools to act as family genetic health educators in order to
disseminate disease risk information and encourage health promoting behaviors.

- 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. be able to read and speak English

2. indicate a willingness to participate in a focus group.

- The urban FHP evaluation phase (Washington, DC Metro area) also requires
participants to have at least one child. (The rural FHP evaluation, Southeastern
US, does not.)

This information will be gauged from the IVETA database and/or through the initial
recruitment discussion. This inclusion criteria has been established as we are interested
in examining health behaviors across generations in an efficient and timely manner through
surveys and focus groups. Focus group participants will be recruited from the larger sample
of participants completing surveys. Therefore, participants will be required to read and
speak English as the focus

groups will be conducted in English. As this is a pilot study, it is not feasible to
recruit large numbers of participants in order to do the focus groups and provide versions
of the survey in alternate languages.

-Those who are adopted will be excluded from the study

FHeP Individual Evaluation Phase

Individual Evaluation

Eligible participants will be invited to participate in the study if they meet the
followingcriteria:

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

- NHGRI employees and those who are adopted will be excluded from the study

Family 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. adult

3. demonstrate basic computer literacy

4. willing to invite at least 2 biological family members to participate

- Those who are adopted will be excluded from the study

FHP Community-based Education Program

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. adult, (greater than or equal to 18 years of age), and

3. indicate a willingness to participate in the study.

- Those who are adopted will be excluded from the study.