Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Young women forming life long partnerships must commit to a new relationship, negotiating intimacy, expectations, and multiple extended family contexts. For women from families with extensive experience with cancer, these normative development tasks must be achieved against the backdrop of serious and persistent physical illness. Most of the empirical work to date on reactions to genetic testing, however, fails to ask about these family histories, the meaning of cancer, or beliefs about the impact of cancer on the life-course. The purpose of this study is to increase the health professions' understanding and conceptualization of the impact of familial disease on life course development for young women with inherited genetic mutations placing them at elevated risk of developing breast and ovarian cancer. Twenty-five women aged 22-36 and living with a BRCA mutation completed comprehensive illness genograms and participated in in-depth, narrative interviews designed to elicit family stories and meanings about cancer and hopes and fears for the future. Interviews were guided by the Contextual Model of Multigenerational Family Development and Hereditary Disease (Werner-Lin, 2005). Transcripts were analyzed using the Listening Guide, a qualitative and narrative data analysis tool pioneered by Gilligan (2003) that emphasizes the use of voice to highlight key themes, relationships, and meaning structures. Results reveal myriad meanings of hereditary cancer risk, influenced by family experiences with cancer, stage of individual and family development, and meaning-making style. Pervasive themes included the presence of “danger zones,” and concerns about sexuality, partner selection, and having and raising children. This study adds a broad, ecological perspective to current understandings of genetic mechanisms across the life span. This perspective, and knowledge gained from this study, will aid health professionals in identifying life-cycle specific psychoeducational interventions targeted at key points in the illness experience.