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 perceptions of adolescents (10-19 years) who had been diagnosed with a genetic disorder in terms of how they describe receiving, understanding, and living with a genetic condition. We undertook a cross-sectional, qualitatively oriented mixed methods study underpinned by the pragmatic paradigm. Adolescents completed two self-report measures - the psychological adaptation scale (PAS) and the illness identity questionnaire (IIQ)-and participated in semi-structured interviews. Demographic, PAS, and IIQ data we

SUBMITTER: Wainstein T 

PROVIDER: S-EPMC12372190 | biostudies-literature | 2025 Aug

REPOSITORIES: biostudies-literature