Memnun Seven1, Lisa L Shah, Sandra Daack-Hirsch, Hülya Yazici. 1. Author Affiliations: College of Nursing, University of Massachusetts Amherst; and Koç University School of Nursing, Istanbul, Turkey (Dr Seven); University of Pittsburgh School of Nursing, Pittsburgh, Pennsylvania (Dr Shah); University of Iowa College of Nursing, Iowa City (Dr Daack-Hirsch); and Cancer Genetics Division, Department of Basic Oncology, İstanbul University Oncology Institute, Istanbul, Turkey (Dr Yazici).
Abstract
BACKGROUND: When a woman is diagnosed with hereditary breast or ovarian cancer, family members may be at high risk of cancers associated with BRCA1/2 gene mutation and benefit from disclosure of the genetic test result. This duty of informing relatives may be distressing, or relatives may not be properly informed. OBJECTIVE: To qualitatively describe breast cancer patients' experiences communicating genetic risk of cancer to their relatives. METHODS: Probands with BRCA1/2 gene mutations were recruited from an oncology institute in Istanbul, Turkey, and interviewed by telephone. Qualitative content analysis was conducted to derive central elements of the 30 women's experiences communicating genetic risk to their relatives. RESULTS: Six themes were identified: response to genetic test results, reason for communication, feelings about communication, reflection after communication, results of communication, and needs. CONCLUSION: Women with cancer found to have BRCA1/2 gene mutations tended to share their genetic test results within the family. The main motives for sharing test results were the desire to encourage relatives to get tested and moral and ethical convictions. Women needed explicit information regarding cancer risk and risk-reducing strategies to act upon. IMPLICATIONS FOR PRACTICE: The women's feelings and reflections about the communication process were varied and suggest that personalized genetic risk communication interventions may better support women with BRCA1/2 gene mutations during and after communication with relatives. Long-term follow-up of those women is essential because of the need for informed decision on risk-reducing strategies.
BACKGROUND: When a woman is diagnosed with hereditary breast or ovarian cancer, family members may be at high risk of cancers associated with BRCA1/2 gene mutation and benefit from disclosure of the genetic test result. This duty of informing relatives may be distressing, or relatives may not be properly informed. OBJECTIVE: To qualitatively describe breast cancerpatients' experiences communicating genetic risk of cancer to their relatives. METHODS: Probands with BRCA1/2 gene mutations were recruited from an oncology institute in Istanbul, Turkey, and interviewed by telephone. Qualitative content analysis was conducted to derive central elements of the 30 women's experiences communicating genetic risk to their relatives. RESULTS: Six themes were identified: response to genetic test results, reason for communication, feelings about communication, reflection after communication, results of communication, and needs. CONCLUSION:Women with cancer found to have BRCA1/2 gene mutations tended to share their genetic test results within the family. The main motives for sharing test results were the desire to encourage relatives to get tested and moral and ethical convictions. Women needed explicit information regarding cancer risk and risk-reducing strategies to act upon. IMPLICATIONS FOR PRACTICE: The women's feelings and reflections about the communication process were varied and suggest that personalized genetic risk communication interventions may better support women with BRCA1/2 gene mutations during and after communication with relatives. Long-term follow-up of those women is essential because of the need for informed decision on risk-reducing strategies.
Authors: Eliana Silva; Pedro Gomes; Paula M Matos; Eunice R Silva; João Silva; Catarina Brandão; Fernando Castro; Maria Carolina Neves; Célia M D Sales Journal: BMC Prim Care Date: 2022-04-23
Authors: Carla Pedrazzani; Monica Aceti; Reka Schweighoffer; Andrea Kaiser-Grolimund; Nicole Bürki; Pierre O Chappuis; Rossella Graffeo; Christian Monnerat; Olivia Pagani; Manuela Rabaglio; Maria C Katapodi; Maria Caiata-Zufferey Journal: J Pers Med Date: 2022-07-29