Becoming and being a parent with an inherited predisposition to diffuse gastric cancer: A qualitative study of young adults with a CDH1 pathogenic variant

Tutty, E; Forbes Shepherd, R; Hoskins, C; Purvis, R; Shanahan, M; Boussioutas, A; Forrest, LE

Author(s): Tutty, E; Forbes Shepherd, R; Hoskins, C; Purvis, R; Shanahan, M; Boussioutas, A; Forrest, LE;
Details: Publication Year 2023,Volume 41,Issue #3,Page 286-302
Journal Title: Journal of Psychosocial Oncology
Publication Type: Research article
Abstract: PURPOSE: This study explored the experiences of young people with hereditary diffuse gastric cancer (HDGC), an inherited cancer predisposition syndrome, as they navigate becoming and being a parent. DESIGN: We used interpretive description and conducted semi-structured interviews with 13 young Australians (18-39 years) with a CDH1 pathogenic variant (PV). Data were analyzed using team-based, reflexive thematic analysis. FINDINGS: Participants' reproductive decisions centered on the perceived manageability of HDGC, namely via gastrectomy, and timing of their genetic testing. Participants yet to have children and those with challenging gastrectomy experiences favored using reproductive technologies to prevent passing on their PV. Parents who had children before genetic testing described complicated decisions about having more children. Gastrectomy was considered a parental responsibility but recovery diminished parenting abilities. CONCLUSION: Young people with HDGC face unique challenges navigating reproductive decision-making and parenting with gastrectomy. Findings lend credence to calls for longitudinal, developmentally sensitive genetic counseling services.
Publisher: Taylor & Francis
Keywords: Adolescent; Humans; Young Adult; Antigens, CD/genetics; Australia; Cadherins/genetics; Genetic Predisposition to Disease; Genetic Testing; Parents; *Stomach Neoplasms/genetics/pathology/prevention & control; Adult; Hereditary diffuse gastric cancer; parenthood; qualitative; reproductive decision-making; young adults
Department(s): Familial Cancer Centre; Surgical Oncology
PubMed ID: 35959852
Publisher's Version: https://doi.org/10.1080/07347332.2022.2104676
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2023-07-11 06:23:39

Last Modified: 2023-07-11 06:25:37