“I have always lived with the disease in the family”: family adaptation to hereditary cancer-risk

Abstract

Background Hereditary cancer syndromes have been conceptualized as a family level process. The present study explores the complexity and challenges of family adaptation to the hereditary cancer syndrome, in the context of genetic counseling and long-term cancer risk management and follow-up surveillance. Methods We performed semi-structured interviews with 13 participants with one of the following hereditary cancer syndromes: Lynch Syndrome, Hereditary Diffuse Gastric Cancer Syndrome, Hereditary Breast and Ovarian Cancer Syndrome, or Familial Adenomatous Polyposis. The interview was developed through a participatory approach with the involvement of healthcare professionals and individuals with first-hand experience of living with the hereditary cancer syndromes. Results The family is the main source of information and emotional support to deal with hereditary cancer syndromes. Multiple individual adaptation processes and communal coping networks interact, influencing the emotional and health-related behavior of family members. This is affected and affects the family’s communication and its’ members reactions to disclosure, with consequent changes in relationships. Conclusions The systemic interdependent dynamics of family adaptation calls for family-centered care of genetic cancer syndromes.

Exploring family communication preferences in hereditary breast and ovarian cancer and Lynch syndrome: A national Canadian survey

“…In such cases, a health care provider may not share genetic test results with the proband's relatives without consent. The impact of family dynamics and communication patterns also in uence how relatives receive information on cancer risk information, and ultimately the decision for counselling and testing (Armstrong et al, 2005;Forrest et al, 2003;Miller et al, 2005;Peters et al, 2005;Silva et al, 2022;Wang., 2005). The importance of a better understanding of attitudes and preferences towards various outreach strategies is underscored by the stated challenges with the acceptable method of practice.…”