Saturday, 14 January 2006 - 12:00 PM
49P

Formal and Informal Support Needs of Young Women with Brca Mutations

Allison V. Werner-Lin, MSW, University of Chicago.

This study addresses the meaning of hereditary breast and ovarian cancer (HBOC) for young women by contextualizing the process of receiving and integrating cancer risk information into a broader systemic family framework. Empirical and clinical literature (e.g., Brower-DudokdeWit, Rolland) suggest a temporal thread running through family understandings of hereditary disease, linking past experiences to current beliefs about vulnerability and plans for the future. Genetic testing contributes concrete information about family bloodline, suggesting enormous consequences for life long partnerships and reproductive decision-making. The cohort under investigation in this study represents the first generation of women to face nodal life cycle decisions about partnering and family planning that incorporate family legacies with illness and genetic information. Evidence suggests genetic testing is an emotionally charged experience for individuals and families. However, as of yet we know very little about the unique support needs of young women as they work to integrate genetic information into a master life plan. Genetic counseling protocols do not typically include psychosocial supports for women beyond initial interactions at the time of testing, and intervention research on formal supports outside genetic counseling centers are sporadic and broad in scope. This investigation explored the formal and informal support needs of young women with BRCA founder mutations as they face these nodal, normative life course events. A national sample of women aged 21-35 with a BRCA founder mutation was recruited over the internet or from the cancer risk clinic at a large, urban research hospital. All participants completed an illness genogram and were interviewed using open-ended questioning. Interview transcripts were analyzed using the Listening Guide method pioneered by Gilligan (2003), which emphasizes the use of voice to highlight key themes, relationships, and meaning structures. Findings suggest that young women with a BRCA founder mutation face unique challenges associated with their specific stage of the family life cycle. These include the impact of gene status and preventive surgery on sexuality, partnering, and fertility. Many participants experienced isolation from family and peers in confronting the impact of cancer risk this early in life. Others indicated the need for support and skills in addressing these issues with family members and potential romantic partners. Finally, participants expressed the need for concrete psychosocial services, including increased formal education and both formal and informal supports targeting these unique issues. Knowledge gained from this study support the argument that psychosocial services must be included in genetic counseling and testing protocols to help mutation carriers in integrating information regarding genetic risk into their lives. In addition, this investigation will aid social workers in devising and implementing specific psychoeducational family-based interventions targeted at key concerns at varied points in the life cycle. Results may also be useful in a variety of clinical contexts where hereditary disease is addressed, including individual and family therapy in medical and private settings. Finally, these findings will continue to strengthen interdisciplinary connections between genetic counselors and physicians and to work towards a holistic model of patient care.

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