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December 2009, Vol 99, No. 12 | American Journal of Public Health 2203-2209
© 2009 American Public Health Association
DOI: 10.2105/AJPH.2008.154096


RESEARCH AND PRACTICE

Characteristics of Health Information Gatherers, Disseminators, and Blockers Within Families at Risk of Hereditary Cancer: Implications for Family Health Communication Interventions

Laura M. Koehly, PhD, June A. Peters, MS, Regina Kenen, PhD, MPH, Lindsey M. Hoskins, MS, Anne L. Ersig, PhD, Natalia R. Kuhn, MPH, Jennifer T. Loud, DNP and Mark H. Greene, MD

Laura M. Koehly is with the Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes Health, Department of Health and Human Services, Bethesda, MD. June A. Peters, Lindsey M. Hoskins, Jennifer T. Loud, and Mark H. Greene are with the Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Rockville, MD. Regina Kenen is with the Department of Sociology and Anthropology at the College of New Jersey, Ewing, NJ. At the time of the study, Anne L. Ersig was with the Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Department of Health and Human Services, Bethesda and the College of Nursing, University of Iowa, Iowa City. At the time of the study, Natalia R. Kuhn was with the Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Department of Health and Human Services, Bethesda.

Correspondence: Correspondence should be sent to Laura M. Koehly, PhD, Building 31, Room B1B37D, 31 Center Drive—MSC 2073, Bethesda, MD 20892 (e-mail: koehlyl{at}mail.nih.gov). Reprints can be ordered at http://www.ajph.org by clicking the "Reprints/Eprints" link.

Objectives. Given the importance of the dissemination of accurate family history to assess disease risk, we characterized the gatherers, disseminators, and blockers of health information within families at high genetic risk of cancer.

Methods. A total of 5466 personal network members of 183 female participants of the Breast Imaging Study from 124 families with known mutations in the BRCA1/2 genes (associated with high risk of breast, ovarian, and other types of cancer) were identified by using the Colored Eco-Genetic Relationship Map (CEGRM). Hierarchical nonlinear models were fitted to characterize information gatherers, disseminators, and blockers.

Results. Gatherers of information were more often female (P < .001), parents (P < .001), and emotional support providers (P < .001). Disseminators were more likely female first- and second- degree relatives (both P < .001), family members in the older or same generation as the participant (P < .001), those with a cancer history (P < .001), and providers of emotional (P < .001) or tangible support (P < .001). Blockers tended to be spouses or partners (P < .001) and male, first-degree relatives (P < .001).

Conclusions. Our results provide insight into which family members may, within a family-based intervention, effectively gather family risk information, disseminate information, and encourage discussions regarding shared family risk.




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