Developing the Family Map: Looking at Communal Coping
Developing the Family Map: Looking at Communal Coping
Background:

 - Knowing one s family medical history is a part of staying healthy. Some health risks run in
 families, and knowing these risks can promote more healthy behavior. Different social and
 cultural factors may affect how family members share this information. Genetic risk
 information that is shared in one family may not be shared in the same way in another. This
 information may also be shared differently between spouses, siblings, or parents and
 children. It may even be shared with more distant relatives. Knowing the information that
 family members share and how they share it may help researchers improve genetic disease
 treatment and support plans. Family surveys of people who have genetic health risks may help
 provide this information.

 Objectives:

 - To study how family members affected by genetic-related diseases share health information
 with each other.

 Eligibility:

 -  Individuals at least 18 years of age who can read English or Spanish.

 -  Participants affected by a genetic disease or be related or married to someone who has
 the disease.

 Design:

 -  Participants will be screened with an initial questionnaire. They will identify their
 genetic disease and provide a basic health history.

 -  Participants who have the disease will complete an online survey or participate in a
 personal interview. The questions will take about 45 minutes to 1 hour to answer. The
 survey will ask about family health history and family support. Participants will also
 provide referrals to a spouse or relatives who will participate in the study.

 -  The spouse or relative will answer a similar survey. The survey will ask about health
 history and support for the spouse/relative with the disease.

 -  A gift card will be given as thanks for participating in the study.
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).