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

18 Years
Open (Enrolling)
Diabetes, Cancer, Cardiovascular Disease

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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.

Inclusion Criteria


- Aged 18 years or older

- Ability to complete web-based survey or telephone interview

- Ability to read English or Spanish

- 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.

- 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.

- Have at least two family members (biological or non-biological (e.g. adopted or
step)relative or a spouse/partner) who are eligible for the study


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 surveys.

Type of Study:


Study Design:


Outcome Measure:

The primary outcome of the current protocol is the development of a methodology to obtain an accurate representation of familial social structure in advance of intervention based on the responses of a few key informants

Principal Investigator

Laura M. Koehly, Ph.D.

Investigator Role:

Principal Investigator

Investigator Affiliation:

National Human Genome Research Institute (NHGRI)


United States: Federal Government

Study ID:




Start Date:

June 2012

Completion Date:

Related Keywords:

  • Diabetes
  • Cancer
  • Cardiovascular Disease
  • Monogenetic and Complex Disease
  • Cardiovascular Diseases



Cincinnati Children's Hospital Medical Center Cincinnati, Ohio  45229-3039
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike Bethesda, Maryland  20892
Rush Presbyterian St. Luke's Medical Center Chicago, Illinois  60612