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Bernhardt BA , Silver R , Rushton CH , Micco E , Geller G
What keeps you up at night? Genetics professionals' distressing experiences in patient care
Genetics in Medicine. 2010 May;12(5) :289-297
PMID: ISI:000277598400006   
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Purpose: To explore specific patient care experiences that genetics professionals associate with distress and the emotions engendered by those experiences. Methods: We conducted semistructured telephone interviews with clinical geneticists, genetic counselors, and genetic nurses that focused on a single distressing experience. Results: Fourteen clinical geneticists, 25 genetic counselors, and 14 nurses were interviewed. We categorized the situations that interviewees associated with distressing patient care experiences into seven major types: patient/family decisions (27% of total situations), giving bad news (17%), colleague behavior (15%), end-of-life issues (12%), unintended outcomes (12%), difficult patients (8%), and injustice/inhumanity (8%). Interviewees reported experiencing a variety of negative emotions during these situations, including anger, guilt, helplessness, and inadequacy. Conclusions: The distress and resulting emotions experienced by genetic service providers must be acknowledged. Interventions are needed to assist the clinician in becoming self-aware by reflecting on experienced emotions, examining belief systems and values, and understanding the connection between their emotions and behavior. Involvement in mindfulness meditation, reflective writing, peer support groups or additional communication skill-based training could address this need. In addition, clinicians should seek ways to increase personal meaning derived from providing patient care. Genet Med 2010:12(5):289-297.
Bernhardt, Barbara A. Silver, Rachel Rushton, Cynda Hylton Micco, Ellyn Geller, Gail National Human Genome Research Institute [5R01HG3004-2] This study is supported by Grant no. 5R01HG3004-2 from the National Human Genome Research Institute. We thank the genetics professionals who responded to our survey and participated in the interviews. We also appreciate the contributions of the other members of our study team and the logistical assistance of the leadership of the National Society of Genetic Counselors, the International Society of Nurses in Genetics, the American Board of Medical Genetics, and the American Society of Human Genetics. 60 Lippincott williams & wilkins; 530 walnut st, philadelphia, pa 19106-3621 usa 595gj