Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services

Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services

Abstract Background Genetic counselling for adolescents necessitates an approach distinct from that used with adults. Developing best practices is crucial, considering the growing number of disabled adolescents worldwide and increasing use of genomic testing early in life. We investigated perception...

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Main Authors: Tasha Wainstein, Cyrus Boelman, Connie Ens, William T. Gibson, Kevin Gregory-Evans, Olubayo U. Kolawole, Sheila K. Marshall, Kathryn Selby, GenCOUNSEL Study, Alison M. Elliott, Jehannine Austin
Format: Article
Language:English
Published: BMC 2025-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Adolescents
Disability identity
Genetic conditions
Genetic counselling
Psychological adaptation
Online Access:https://doi.org/10.1186/s13023-025-03968-x
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