Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study
Bon, Sebastian B B; Wouters, Roel H P; Hol, Janna A; Jongmans, Marjolijn C J; van den Heuvel-Eibrink, Marry M; Grootenhuis, Martha A
(2022) Psycho-Oncology, volume 31, issue 10, pp. 1692 - 1699
(Article)
Abstract
OBJECTIVE: In pediatric oncology, large-scale genetic sequencing contributes to the identification of cancer predisposition, which can facilitate surveillance and family counseling. Our qualitative study explores families' motives, knowledge, and views regarding germline genetic sequencing to improve future counseling and support. METHODS: Semi-structured interviews were conducted with parents of children with
... read more
renal tumors participating in a national center, germline sequencing study. An inductive thematic analysis approach was used. Twenty nine parents participated, 17 mothers and 12 fathers. The median age of the affected children was 4 years. RESULTS: Parents were generally positive about sequencing and reported a combination of individual and altruistic motives to participate. Some families counseled about sequencing shortly after cancer diagnosis felt overwhelmed. Many parents had difficulties distinguishing between panel and exome-wide analysis. Families in which no predisposition was identified felt reassured. Most families did not experience distress after a predisposition was disclosed, although sometimes stress following disclosure of a predisposition added to pre-existing (cancer-related) stress. CONCLUSIONS: Even though families reported positive experiences with germline genetic sequencing to detect cancer predisposition, timing of consent for sequencing as well as parents' understanding of genetic concepts can be further improved.
show less
Download/Full Text
Keywords: Child, Child, Preschool, Disclosure, Female, Genetic Predisposition to Disease, Humans, Kidney Neoplasms/genetics, Parents/psychology, Qualitative Research, pediatric oncology, cancer predisposition, oncology, psycho-oncology, genetic counseling, informed consent, cancer, Experimental and Cognitive Psychology, Psychiatry and Mental health, Oncology, Research Support, Non-U.S. Gov't, Journal Article
ISSN: 1057-9249
Publisher: John Wiley & Sons Inc.
Note: Funding Information: We thank all families who took part in the study. This study was funded by KiKa, the Dutch Children Cancer Free Foundation (grant number 339). The sequencing study was also funded by KiKa (grant number 278). Publisher Copyright: © 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.
(Peer reviewed)