Friday, 14 January 2005 - 2:00 PM

This presentation is part of: Psychosocial Impact of Medical Illness and Disability

A Phenomenological Study of Multigenerational Family Development and Hereditary Disease

This phenomenological investigation examined the meaning of family illness histories for young adults at elevated risk of developing hereditary breast or ovarian cancer. Its aim is to increase understanding of the impact of family illness histories and genetic testing on normal family development, specifically, partnering and family planning. Young adults forming life long partnerships must commit to a new relationship, negotiating intimacy, expectations, and multiple extended family contexts. This investigation explored the meaning of family illness experiences on these “normal” life course events. Specifically, what is the meaning of family illness histories for young women at risk of developing familial disease? How do family illness histories impact normative family life cycle development for these women, with specific regard to partnering and family planning? Evidence from investigations with families affected by hereditary cancers and Huntington’s disease show that both family and personal experience with illness do impact life decisions, and this impact varies with the degree of exposure to the disease. Participants in this investigation are women aged 20-35, who completed genetic testing in a metropolitan genetic testing clinic and who were determined to carry a BRCA1 or BRCA2 mutation, placing them at significantly increased lifetime risk of developing cancer. All participants were interviewed using open-ended questioning to attempt to elicit personal meanings about being at risk. Each participant also worked with the researcher to develop a multigenerational family illness genogram to track perceptions of illness histories and family structure. Data were analyzed using the Empirical Phenomenological Psychological Method pioneered by Karlsson (1993). Overall, participants had extensive experience with cancer. During analysis, several categories of meaning emerged. For many women, knowing through family evidence was a powerful theme. Family illness experiences and legacies were translated into telling “facts” about future diagnoses for participants, all presymptomatic gene carriers. For these participants, being at risk, or just being a woman in the family, meant developing cancer early in life, and in some cases, meant dying young. For these women, genetic testing results contributed little to their expectations for their own futures. Another common theme was witnessing – being present through suffering, both of the affected individual and of the rest of the family. Planning was a salient theme with regard both to children and to cancer surveillance. A final definitive theme was vulnerability – both constitutionally (genetic), and relationally (with regard to highly valued existing and future family roles). The aim of this analysis is to add to the knowledge base of psychosocial genetics by contextualizing the process of receiving and integrating illness risk information into a broader systemic family framework. Knowledge gained from this investigation will give social workers the power to devise and implement psychosocial interventions for these families, to strengthen interdisciplinary connections with genetic counselors and physicians, and to support social work’s position in the growing field of psychosocial genetics.

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