Experiences of genetic counseling students with disabilities and chronic illnesses: A qualitative study

While many patients with disabilities or chronic illnesses are served by genetic counselors, little effort has been made to promote the inclusion of individuals with disabilities and chronic illnesses as professionals in the genetic counseling field. Genetic counselors with disabilities and chronic...

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Bibliographic Details
Published in:Journal of genetic counseling 2023-12, Vol.32 (6), p.1161-1173
Main Authors: Epstein, Rachel, Fuerstman, Laura, Heidlebaugh, Alexis, Schiller, Julia, Zayhowski, Kimberly
Format: Article
Language:English
Subjects:
Chronic Disease
Chronic illnesses
Counselors
disability
Disabled Persons
diversity
education
Genetic counseling
Genetic Counseling - psychology
genetic counselors
Graduate studies
Humans
Interpersonal relations
Interviews
lived experience
People with disabilities
Qualitative Research
Students - psychology
Students with disabilities
Training
underrepresented populations
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Summary:While many patients with disabilities or chronic illnesses are served by genetic counselors, little effort has been made to promote the inclusion of individuals with disabilities and chronic illnesses as professionals in the genetic counseling field. Genetic counselors with disabilities and chronic illnesses have reported insufficient support from their colleagues throughout all stages of their professional journeys, but there is a lack of research exploring these challenges. To gain an understanding of the experiences of this community during graduate training, we conducted semi‐structured interviews with 13 recent graduates of genetic counseling programs who identify as having a disability or chronic illness. Questions explored various aspects of the graduate school experience including challenges, strengths, relationships, disclosure, and accommodations. Qualitative thematic analysis of interview transcripts resulted in six themes: (1) decisions around disclosure are complex, (2) interactions with others contribute to feeling misunderstood, (3) the high‐performance culture in graduate programs makes it challenging to meet personal needs, (4) interpersonal relationships provide support, (5) the accommodation process is often disappointing, and (6) lived experiences are valuable to patients. This study reveals opportunities to better support genetic counseling students with disabilities and chronic illnesses through strengthening inclusion efforts, shifting away from ableist ideologies, and promoting more flexible training options.
ISSN:1059-7700
1573-3599
DOI:10.1002/jgc4.1726