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Dr. Koehly's research focuses on developing and applying social network methods to the study of complex social systems, such as families and communities. The ultimate goal of her research is to develop interventions for increasing the efficacy of health counseling, testing and surveillance within family networks. Her research is specifically directed to fostering individuals' willingness to initiate and share risk information throughout their family system, developing effective approaches to facilitate informed decision making among all members of an at-risk family system about undergoing risk counseling, and overcoming barriers in reaching disconnected family members (e.g., due to estrangement or the death of a key family member). Ultimately, her research aims to develop effective strategies to help families cope with disease-risk information and to increase patients' willingness to share such information with their personal physician and other health care personnel. With the surge in availability of genetic testing and counseling services, medical practitioners need to understand how social networks operate and, in particular, how an individual disseminates relevant disease-risk information to other potentially susceptible family members. This kind of knowledge is particularly valuable to health care practitioners because it could help facilitate and refine the specific prevention and treatment approaches they use for their own patients. Previous research in this field has focused primarily on the "index case" (the patient) and only one or two relatives. Unfortunately, this narrow view provides a biased perspective. Moreover, traditional statistical models have assumed that individuals respond to disease-risk information independently when, in fact, they do not. Dr. Koehly's research seeks to overcome such limitations by studying entire family systems and developing network models that consider the social context in which the at-risk individual lives. In turn, these models should allow her to better understand the impact of the interpersonal environment on an individual's (or a system of individuals') behaviors. In one of her research projects, Dr. Koehly is seeking a broader understanding of difficult-to-reach members in an index case's social network. Before devising contact systems to reach such individuals - typically those outside the nuclear family - she and her colleagues are studying how health information (including genetic-risk information) is conveyed through the family, identifying any significant barriers to this process. Dr. Koehly also is studying family members' knowledge of their close friends and relatives ("close others") and where within the family structure these close others are situated. The purpose of this investigation is to better understand how hard-to-reach family members and those who do not respond to health-risk information fit into the family's full social system. In another project, Dr. Koehly is examining how families and their social systems vary in their response to different genetic diseases. Initially, she is investigating whether the diffusion of information or coping processes differ by condition. For instance, there may be significant variation in responses to early-onset versus late-onset diseases or in responses to diseases with lower versus higher survival rates. For this research project, Dr. Koehly is using a social interaction model created for studying families at risk for hereditary nonpolyposis colon cancer (HNPCC). Although participants in this study were generally willing to share information about HNPCC with their nuclear families (first-degree relatives and spouses), those affected by HNPCC and mutations carriers were the ones most likely to inform their extended family members if they shared advice-seeking, supportive, and close relationships. Future work will develop network-based interventions that utilize influential family members to communicate risk information to extended family members. Dr. Koehly also is interested in obtaining baseline information about how "average families"- that is, those who are not affected by or identified as high-risk for a specific condition - communicate with one another and their degree of closeness to one another. These patterns could serve as control or reference groups in social network studies conducted in specific health contexts. Additionally, families from different ethnic and racial backgrounds might exhibit different patterns of family support and communicative relations. Understanding the multicultural aspects of the family support and communication structure will help in developing network-oriented interventions that are sensitive to these differences. In addition, understanding the family culture from a network perspective will provide important information for delivering genetic counseling and genetic-risk education.
Last Reviewed: February 13, 2009 |
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