Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services
Our findings present a foundation upon which to develop a care model optimized for the needs of adolescents with genetic conditions. Enhancing access to genetic counselling as a means of facilitating identity development is an important component of these care models.
Authors
- L. Clarke (ORCID: https://orcid.org/0000-0003-0512-7281)
- Bartha Maria Knoppers (ORCID: https://orcid.org/0000-0001-7004-2722)
- Tasha Wainstein (ORCID: https://orcid.org/0000-0002-4890-9657)
- Wyeth W. Wasserman (ORCID: https://orcid.org/0000-0001-6098-6412)
- Kathryn A. Selby (ORCID: https://orcid.org/0000-0001-9239-1704)
- Cyrus Boelman (ORCID: https://orcid.org/0000-0001-9943-1561)
- Ma’n H. Zawati (ORCID: https://orcid.org/0000-0002-8905-6259)
- Nick Dragojlovic (ORCID: https://orcid.org/0000-0001-8600-371X)
- Jan M. Friedman (ORCID: https://orcid.org/0000-0002-7482-9570)
- Sheila K. Marshall (ORCID: https://orcid.org/0000-0001-9330-8407)
- Nick Bansback (ORCID: https://orcid.org/0000-0002-1510-3462)
- Patricia Birch (ORCID: https://orcid.org/0000-0003-3831-2344)
- Shelin Adam (ORCID: https://orcid.org/0000-0002-4401-6157)
- Daryl Pullman (ORCID: https://orcid.org/0000-0001-9478-9644)
- William T. Gibson (ORCID: https://orcid.org/0000-0002-6552-402X)
- Larry D. Lynd (ORCID: https://orcid.org/0000-0002-7622-3919)
- Alivia Dey (ORCID: https://orcid.org/0000-0003-0729-3080)
- Jehannine Austin (ORCID: https://orcid.org/0000-0003-0338-7055)
- Alice Virani (ORCID: https://orcid.org/0000-0003-1374-3172)
- Kevin Gregory‐Evans (ORCID: https://orcid.org/0000-0003-3572-3105)
- Deborah M. Lambert (ORCID: https://orcid.org/0000-0003-0967-0476)
- Alison M. Elliott (ORCID: https://orcid.org/0000-0002-9896-1314)
- Olubayo U Kolawole
- Connie Ens
Institutions
- Providence Health Care (CA)
- Memorial University of Newfoundland (CA)
- University of British Columbia (CA)
- Provincial Health Services Authority (CA)
- Mater Misericordiae University Hospital (IE)
- Heart Foundation (US)
- McGill Genome Centre (CA)
- Centre for Advancing Health Outcomes (CA)
- Women's Health Research Institute (CA)
- BC Children's Hospital (CA)
- McGill University (CA)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-21
- DOI
- https://doi.org/10.1186/s13023-025-03968-x
- Citations
- 2
- Primary Topic
- BRCA gene mutations in cancer
- Type
- article
- Field-Weighted Citation Impact
- 3.63
Funders
- Genome Canada
- Canadian Institutes of Health Research