Shared Decision-Making Experiences of Couples with Inherited Cancer Risk Regarding Family Building

Abstract

Patients with hereditary cancer predisposition syndromes have a high likelihood of passing germline mutations to future offspring. Patients at risk for inherited cancer may not have started and/or completed building their families; thus, they must decide about having children and consider the possibility of passing on their germline mutation. Utilizing the Shared Decision Making (SDM) Model, this study explores family building decision-making communication processes in opposite-sex couples with inherited cancer risk (ICR). Fifteen couples completed two recorded, analogue discussions and dyadic interviews at two time points. Participants were recruited through social media and snowball sampling. The constant comparison method was utilized to thematically analyze the data. When couples discussed family building options (FBOs), several themes were identified: FBO risks, FBO considerations, genetic-related FBO logistics, and life FBOs logistics. When deliberating family building decisions, couples shared easy conversational topics (e.g. FBO options and potential child’s cancer risk due to a genetic variant) and difficult/conflict-inducing topics (e.g. preparing for possibilities, parenting, emotions, finances, and timing). Last, couples self-reported primary and secondary FBOs. The findings of this study capture couples’ decision-making communication process while considering their experiences. Clinicians and practitioners can utilize these findings to support couples’ family building decisions considering their ICR.