"Anybody who can clarify or humanize the experience would be such a help": An interpretive description of perceptions of genomic health and nursing care in individuals with cancer predisposition syndromes.

Abstract

Purpose: There is increased use of genomic testing in oncology care. Yet, individuals with hereditary cancer predisposition syndromes (CPS) experience challenges when navigating the lifelong CPS healthcare considerations. The purpose of this study is to describe the healthcare experiences of individuals living with CPS and their perceptions of genomic-informed nursing care.

Methods: Interpretive description (ID) was the qualitative approach used in this patient-oriented research study, conducted in partnership with two individuals with lived experience of CPS. Participants were recruited to participate in an interview using a variety of public and provider/patient network sampling sources. Inductive data analysis was guided by general steps for ID analysis as described by Sally Thorne.

Results: Thirty-seven individuals who self-reported a CPS participated in interviews between April and August 2023. Two primary themes were identified: 1), When genomic knowledge is power, and 2), Perceived acceptability of nursing roles in CPS care. Participants described genomic knowledge as a form of personal and family empowerment, but many reported that CPS-related knowledge is inaccessible in the healthcare system. This often resulted in healthcare experiences that were insufficient and fragmented. Although participants reported minimal nursing involvement in their CPS care, there was a consensus that enhanced nursing contributions could be beneficial. They particularly endorsed the potential value of a dedicated oncology genomic nursing role.

Conclusions: Findings highlight patient-endorsed opportunities for nurses at the generalized and specialized levels to contribute to improved cancer genomic care. Findings can be used to inform novel models of clinical care for individuals with CPS.