Learning About a Twist in the Road: Perspectives of At-Risk Relatives Learning of Potential for Cancer

Abstract

To describe the experiences of women who accessed the Facing Our Risk of Cancer Empowered (FORCE) Web site after learning of a family BRCA1 or BRCA2 mutation. Interpretive phenomenology based on Heideggerian hermeneutics. Telephone interviews of women living in the United States who accessed FORCE. A purposive sample of eight women aged 19-47 years. Team interpretation using Diekelmann, Allen, and Tanner's seven-step process. Experience of family communication of BRCA results. Women described (a) finding out, (b) unexpected feelings, (c) mulling it over, (d) finding support, (e) seeking direction from healthcare professionals, (f) redefining future possibilities, and (g) navigating a twist in the road. Many healthcare professionals are not prepared to address genetic risk. Some women who learned of potential risk experienced turmoil as potential risk for cancer unfolded. They felt isolated and unsupported by healthcare providers. They desired assistance in navigating the healthcare system to protect their future health. Healthcare professionals have important roles in (a) assessing support networks of individuals seeking BRCA testing, (b) providing anticipatory guidance on risk communication, (c) remaining sensitive to the impact of seeing cancer as a future possibility, (d) allowing time for individuals to process such news, (e) assessing the psychosocial impact of news of a family BRCA mutation, and (f) providing referrals for support and health needs. Women desire decision support from healthcare providers. Future research should examine cancer risk communication in diverse groups of women.