Manager of Information & Education Services Levy Library, Icahn School of Medicine at Mount Sinai Astoria, New York
Objectives: In recent years, moral distress has become a topic of interest among health professionals. Moral distress is most commonly described in the nursing literature, and refers to a situation wherein an individual knows the correct action to take, but is constrained from doing so. While moral distress differs from the classic ethical dilemma, in recent years practitioners and theorists have advocated for a broadening of the definition of moral distress. To date, no study has examined another group of individuals who frequently interact with patients and who may be constrained by the confines of their role - consumer health information professionals. The objective of this study was to determine if consumer health information professionals experience ethical dilemmas and/or moral distress, and to determine what, if any, coping strategies these individuals have developed to manage their distress.
Methods: This study employed a mixed methods approach. Quantitative data were gathered via an online survey which was distributed to relevant consumer health information professional listservs. The survey contained demographic questions and a series of questions related to potential distress within the context of work as a consumer health information professional. Qualitative data were also gathered through phone interviews with consumer health information professionals. Interview questions included the interview subject’s definition of moral distress, professional experiences with moral distress, and any coping strategies to manage said distress.
Results: The authors received 213 survey responses. To test whether any of our demographic variables help to explain survey response, we used STATA to calculate Pearson correlation coefficients. Individuals who were more likely to experience distress in their occupation as consumer health information professionals included individuals with less experience and individuals who identified as Black and Latinx. Interview data indicated that subjects most commonly experienced ethical dilemmas related to censorship, providing prognosis information, and feeling constrained by institutional policies. Few interview subjects described scenarios that reflected moral distress.
Conclusions: Consumer health information professionals do not appear to experience moral distress, at least according to its most narrow definition. It appears that consumer health information professionals may confuse moral distress and ethical dilemmas, or conflate the two. However, consumer health information professionals do consistently experience distinct ethical dilemmas, and the most durable patterns of this distress appears to be related to experience and racial identity. Further study is needed to determine how to best address the impacts of distress caused by ethical dilemmas among these groups.