Trial Information

Development of the Family Map: Examination of Communal Coping Across Disease Context

Facilitating the dissemination of disease risk information and promoting engagement in
healthful behaviors within families may be enhanced by using network-based interventions.
Networkbased interventions are innovative in that they are tailored to the structure of the
social system within which individuals are embedded. Understanding the social and relational
factors associated with processes of family risk information dissemination, family
encouragement, and support is essential to developing network-based intervention tools
targeting the family. The first objective of the current project is to ascertain those key
social pathways that can be used in a family-centered network-based intervention that
promotes disease prevention. To this end, efforts will be focused on assessing whether there
is a consistent, small set of relational characteristics associated with the dissemination
of family risk information and processes of both behavioral and emotional adaptation to
disease risk across various disease and cultural contexts. The second objective is to
examine the feasibility of using cognitive network approaches to assess social interactions
among family members as a means to enhance the implementation of a network-based
intervention. A cognitive network is an individual's perception of the relationships among
their family (or network) members. Thus, cognitive network approaches can be used to capture
an accurate representation of family social structure based on the information provided by a
small subset of optimally-situated family members. Those key social pathways identified
within the first objective of this research will be used to address the second objective.
Families affected by diseases and disorders that span the spectrum of genetic penetrance,
ranging from highly penetrant, monogenetic disease to less penetrant, common complex
conditions, will be recruited for the study. Further, the current effort will seek to engage
samples from diverse cultural backgrounds to address our limited knowledge regarding risk
communication and adaptation in such families and to facilitate generalization of results.
Study participants will be recruited from established cohorts or ongoing studies, both at
the NIH and at extramural institutions. Family members will be recruited using a snowball
sampling approach and will be asked to complete a web-based or telephone survey. The
research addressed in this protocol will lead to the development of an innovative
methodology with the potential to improve the design and implementation of family-based
interventions that promote disease prevention.