Developing the Family Map: Looking at Communal Coping

Facilitating the dissemination of disease risk information and promoting engagement in
healthful behaviors within families may be enhanced by using network-based interventions.
Network-based 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 an in-person, web-based and/or telephone survey/interview.
Interviews will have a semi-structured format to allow for slight deviations in prompts and
probes to address patient questions. 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.

- INCLUSION CRITERIA:

- Aged 18 years or older

- Ability to complete in-person, web-based or telephone survey/interview(s)

- Ability to read English or Spanish (in some cases)

- Affected by or have at least one first- or second-degree relative affected by or have
a spouse/partner affected by the disease(s) of interest OR Biological or
non-biological (e.g. adopted or step) relative of the primary participant or
spouse/partner of the primary participant or biological relative of primary
participant.

EXCLUSION CRITERIA:

Individuals with cognitive difficulties will be excluded from the study, as participants
will be required to comprehend and legally consent to participation in this study and
complete the survey/interview(s).