Genetic service providers experience various sources of distress in the course of patient care. Among the most prevalent are compassion stress, the burden of professional responsibility, negative patient regard, inauthenticity, and concerns about informational bias. Some types of distress, including concerns about informational bias, personal values conflicts and burden of professional responsibility, may be especially pertinent to genetic counseling, and appear to be experienced more acutely by genetic counselors.53
Although the literature suggests that genetic counselors experience compassion stress and fatigue, 42, 47
our results indicate that compassion stress also weighs on clinical geneticists and nurses. Two of our subscales, personal values conflicts and inauthenticity, overlap with moral distress as defined in the field of nursing.15-19
However, negative patient regard, patient dread and collegial distrust as sources of distress have received little attention in the literature. Future research is needed to determine if these sources of distress are experienced by practitioners outside of genetics.
Overall distress was a significant risk factor for burnout and was not related to years in practice or percent time seeing patients. Previous research has documented that clinician burnout is associated with being younger54, 55
. This inverse correlation between age and burnout may be reflective of a “survival bias” in which younger clinicians with higher levels of burnout are likely to leave their professions, leaving a pool of older clinicians with lower levels of burnout.40
In our study, the higher level of burnout observed in genetic counselors could be attributed to the fact that they are, in general, much younger than the physicians and nurses surveyed. Gender, however, does not appear to be associated with burnout in our sample. In fact, nurses, who are predominately female, are less likely to report burnout. This is particularly striking given the powerful evidence of burnout among nurses more generally.36, 37
Nurses in our sample were older, not generally working in critical care settings, and have made mid-career changes to specialize in genetics. This self-selected group of nurses might also be more engaged and fulfilled in their work, or may have more institutional support or a lower workload. Our data suggest that nurses, in fact, experience greater professional accomplishment and overall professional satisfaction, and derive more meaning from providing patient care than clinical geneticists and genetic counselors.48
There is evidence in the literature that the establishment of fulfilling and meaningful connections with patients protects against burnout,32, 39, 48
and we have shown elsewhere that nurses trained in genetics are more likely than genetic counselors to report having established partnerships with their patients.57
However, even when controlling for disciplinary background and years in practice (a proxy for age), distress and lack of meaning derived from patient care are the strongest predictors of burnout in this study.
Our findings are limited by several factors. First, the items reflecting “clinician distress” were identified by focus group participants who were all Caucasian, and primarily female. A more demographically diverse group may have identified different sources of distress. Moreover, because nurses and genetic counselors are predominantly female, gender and discipline are highly confounded and should be disentangled in future research. Second, because the majority of respondents reported a mixed practice of prenatal, pediatric and adult patients, we were unable to determine whether experiences with a particular type of patient were related to distress or burnout. A larger sample size including more providers seeing only one type of patient would have allowed us to examine these variables by patient type. Third, the response rate for clinical geneticists and nurses was not as high as we had hoped. Since we were unable to obtain aggregate information to determine the representativeness of those samples, we do not know if respondents differed from non-respondents in meaningful ways. Fourth, we did not assess the prevalence and impact of external
sources of stress that are associated with burnout– e.g., being overworked, underpaid, and lacking resources – because they are likely to be relevant in all clinical settings and we wanted to see what sources of distress might be particular to the genetics context. Moreover, we were particularly interested in focusing on internal sources of distress because less is understood about them than about external sources of stress. Nevertheless, by omitting external sources of stress from our survey, we were unable to determine the extent to which they are related to burnout and professional dissatisfaction among genetics professionals. We were also unable to assess cause and effect in that it could not be determined if burnout leads to increased perceptions of distress, or if the experience of distress leads to burnout.47
Despite these limitations, we believe our findings represent an important and valid contribution to the literature for several reasons. Ours is the first study to describe and quantify various sources of distress and levels of burnout among genetics professionals. Second, whereas most of the literature on burnout and professional satisfaction has focused on a single discipline (either medicine or nursing or genetic counseling), our findings suggest that “clinician distress in patient care” crosses disciplinary lines. Finally, our results provide strong evidence that “clinician distress in patient care” is related to burnout, which, in turn, contributes to thoughts about leaving patient care. In order to meet the growing service needs that are likely to result from advances in molecular genetics, efforts should be made to monitor for distress, particularly among genetic counselors, university based providers, and those who are relatively new to the field.
We are currently analyzing data from interviews and follow-up focus groups we conducted with genetic service providers to develop recommendations for addressing distress. Although extensive recommendations for clinical practice, training and future research will be forthcoming, based on the survey results reported here, some preliminary recommendations can be made.
First, distress experienced by genetic service providers must be acknowledged. Self-monitoring, reflection, and discussion of the situation with either a trusted colleague, or in a formal or informal group setting had been advocated for physicians25
and nurses in general17
, as well as for genetic counselors. 47
Based on our finding that collegial distrust can be a source of distress, group interventions to address distress and burnout may be most effective by including all members of the genetics team. Such mixed support groups could address all types of distress identified in this study while simultaneously encouraging communication, trust and support among team members.
Second, we show here that increased “personal meaning in patient care” is inversely related to distress and burnout. Increased meaning may be derived by forming strong connections with patients. Such connections are fostered through bearing witness, which has been described by Naef as a “fundamental process of “being there and being with, listening and attending to, and staying with persons as they live situations of health and illness, shape their quality of life, search for meaning, struggle to make difficult choices, and experience intense moments of recognition, fear, joy, and sorrow”.58
If genetic service providers were to acknowledge that bearing witness was central to their work with patients, we believe that some of the distress experienced, especially that related to the burden of professional responsibility, patient dread, and concerns about informational bias would decrease. Unfortunately, the current emphasis in clinical genetics and genetic counseling on factual information, patient education and patient autonomy may interfere with the provider's ability to form a strong partnership with patients.
Programs that train genetics professionals should consider addressing distress and burnout overtly as part of their curricula. Some of the interventions that are being developed and implemented outside of genetics59-63
may be useful models for preventing or reducing distress and burnout among trainees and practitioners in genetics.