A qualitative investigation of genetic counselors' experiences working with incarcerated patients
Source: PubMed Central Open Access, NCBI / U.S. National Library of Medicine
Abstract The United States has the highest rate of incarceration of any country and as the incarcerated population grows, health disparities increase. Genetic counseling provides essential healthcare that reduces health disparities through education regarding preventative screening and inherited health risks. Although genetic counselors (GCs) are involved in the care of incarcerated patients, there is limited research on the perspective of GCs working with this population. The purpose of this qualitative study was to explore the experiences of GCs working with incarcerated patients and explore opportunities to improve access and barriers to providing care. GCs who provided care for incarcerated patients were recruited in 2022 via the National Society of Genetic Counselors (NSGC). Ten interviewees from five different clinical specialties completed semi‐structured interviews that explored experiences working with incarcerated patients. Interviews were analyzed using reflexive thematic analysis, and four themes reflected participants' experiences: Prisons as the middle person; Scratching the surface of trauma; Perceptions of incarceration: Counselor bias; and Guidance and training needed. Participants' experiences described distinct differences in care for incarcerated patients given their navigation of the prison system and involvement of guards that changed the way they counseled, whether in the depth of providing psychosocial counseling and supports providing post‐test counse
Abstract
Abstract The United States has the highest rate of incarceration of any country and as the incarcerated population grows, health disparities increase. Genetic counseling provides essential healthcare that reduces health disparities through education regarding preventative screening and inherited health risks. Although genetic counselors (GCs) are involved in the care of incarcerated patients, there is limited research on the perspective of GCs working with this population. The purpose of this qualitative study was to explore the experiences of GCs working with incarcerated patients and explore opportunities to improve access and barriers to providing care. GCs who provided care for incarcerated patients were recruited in 2022 via the National Society of Genetic Counselors (NSGC). Ten interviewees from five different clinical specialties completed semi‐structured interviews that explored experiences working with incarcerated patients. Interviews were analyzed using reflexive thematic analysis, and four themes reflected participants' experiences: Prisons as the middle person; Scratching the surface of trauma; Perceptions of incarceration: Counselor bias; and Guidance and training needed. Participants' experiences described distinct differences in care for incarcerated patients given their navigation of the prison system and involvement of guards that changed the way they counseled, whether in the depth of providing psychosocial counseling and supports providing post‐test counseling. Participants had varied perceptions and emotional responses regarding care for incarcerated patients and thus sought guidance and training in working with this population. The participants' experiences illustrate how tenets of the Reciprocal‐Engagement Model of Genetic Counseling, specifically the importance of the counseling relationship, patient autonomy, and patient emotions in the genetic counseling process, are different in genetic counseling of the incarcerated population. Participants desired training on the needs of incarcerated patients for clinical practice and genetic counseling education. Study recommendations point to the need for formal genetic counseling guidelines for working alongside incarcerated patients.