Get access

Genetics professionals' experiences with grief and loss: implications for support and training

Authors

  • G Geller,

    Corresponding author
    1. Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA
    2. Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
    3. Department of Health, Behavior & Society, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA
    4. Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA
    Search for more papers by this author
  • CH Rushton,

    1. Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA
    2. Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA
    3. School of Nursing, Johns Hopkins University, Baltimore, MD, USA
    Search for more papers by this author
  • C Francomano,

    1. Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
    2. Harvey Institute of Human Genetics, Greater Baltimore Medical Center, Baltimore, MD, USA
    Search for more papers by this author
  • K Kolodner,

    1. Baltimore, MD, USA
    Search for more papers by this author
  • BA Bernhardt

    1. Penn Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, PA, USA
    2. Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
    Search for more papers by this author

Gail Geller, ScD, MHS, Johns Hopkins University, 624 N. Broadway, Room 350, Baltimore, MD 21205, USA.
Tel.: +1 410 955 7894;
fax: +1 410 614 9567;
e-mail: ggeller@jhmi.edu

Abstract

Geller G, Rushton CH, Francomano C, Kolodner K, Bernhardt BA. Genetics professionals' experiences with grief and loss: implications for support and training.

This study was designed to determine the degree to which clinical genetics professionals are comfortable with grief and loss, whether discomfort with grief and loss is associated with clinician distress, and what factors predict comfort with grief and loss for the purpose of developing recommendations for support and training. We surveyed 300 clinical geneticists (MDs), genetic counselors (GCs) and genetic nurses randomly selected from their professional associations. Out of 225 eligible clinicians, 172 completed surveys (76% response rate). The vast majority of respondents have clinical interactions with patients and families who are experiencing grief, loss and/or death. However, nearly 20% of respondents reported that they did not feel ‘comfortable in the presence of grief and loss'. Twenty-nine percent of respondents disagree or strongly disagree that they ‘have been adequately trained to address issues of death, dying, grief/bereavement, and end of life care’. Reported discomfort with grief and loss was strongly correlated with clinician distress. Predictors of comfort with grief and loss included perceived adequacy of training, tolerance for uncertainty, significant personal experiences of loss and deriving meaning from patient care. In conclusion, as follows. A significant minority of clinical genetics professionals experience discomfort in the presence of grief and loss, and feel inadequately prepared for such experiences. Greater attention should be paid to training clinicians in how to deal with grief and loss, and supporting them through such difficult experiences in an effort to reduce their distress.

Ancillary