Dataset Information

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

ABSTRACT: In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants' range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.

SUBMITTER: Ersig AL

PROVIDER: S-EPMC6581043 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Ersig Anne L AL Werner-Lin Allison A Hoskins Lindsey L Young Jennifer J Loud Jennifer T JT Peters June J Greene Mark H MH

Journal of family nursing 20181212 1

In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation ...[more]

PMID: 30537877

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Project description:Note: Data Use Restrictions: <ul> <li>The data must only be used for genetic research projects solely in the area of health-related social-network research.</li> </ul> This study compiles detailed information on family and social ties linked to participants in the offspring cohort of the Framingham Heart Study. The investigators took computerized information from self-report data used by the FHS for over 30 years to facilitate health exam scheduling. These tracking sheets asked participants to identify people close to them, which were assumed by the investigators to indicate a social tie. Individuals are listed as "egos" (if the ties are from their perspective) and/or "alters" (if they are linked as a friend or family members to one of the other participants). All egos were FHS offspring participants while alters could be FHS participants in any cohort or non-participants. This information was combined with internal FHS pedigree data on family ties to list family member alters (as well as the nature of their relationship). The resultant dataset therefore includes each ego-alter tie, the nature of their relationship and the start and end dates for their ties for each of seven waves for the offspring study. Due to privacy concerns, all exam dates for individuals are listed relative to the initial FHS exam date. The study investigators chose a random, confidential date, to which all initial exam dates are linked (by number of months from random date to initial exam date). With this information, researchers can have access to the temporal relationships among participants' exam dates while remaining unaware of the actual exam dates for individual participants. During each clinic exam cycle, the participants undergo a detailed examination including physical examination, medical history, laboratory testing, and electrocardiogram. Over the years, other tests (that may not be performed at every exam cycle) have included pulmonary function, lifestyle, physical function, cognitive function questionnaires, and various noninvasive cardiovascular tests including echocardiograms. This study involves phenotypic data from these exams including (when available) basic body measurements (height, weight, blood pressure), laboratory values (blood sugar levels, LDL levels), information on smoking and alcohol use, and tests of depression and cognitive functioning. Important links to apply for individual-level data <ol> <li><a href="http://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?view_pdf&stacc=phs000153.v3.p3" target="_blank">Data Use Certification Requirements (DUC)</a></li> <li><a href="GetPdf.cgi?id=phd001183.1" target="_blank">Instructions to Request Authorized Access</a></li> <li><a href="http://view.ncbi.nlm.nih.gov/dbgap-controlled" target="_blank">Apply here for controlled access to individual level data</a></li> <li><a href="GetPdf.cgi?id=phd000317" target="_blank">Participant Protection Policy FAQ</a></li> </ol> In 1948, researchers recruited men and women from the town of Framingham, Massachusetts, beginning the first round of extensive physical examinations and lifestyle interviews that would later be analyzed for common patterns related to CVD development. Initially, the Framingham Heart Study enrolled 5,209 men and women from the Framingham area who were between the ages of 28 and 62 years. Beginning in 1971, the Framingham Heart Study enrolled 5,124 men and women, who were either offspring of the original cohort or spouses of those offspring. In 2002, 4,095 third generation participants (men and women) were enrolled.

Dataset Information

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Publications

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

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