Trial Information

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