“It's Challenging on a Personal Level”—Exploring the ‘Lived Experience’ of Australian and Canadian Prenatal Genetic Counselors

Participant Demographics

All of the participants were female and 11 participants had experienced being pregnant while working in a prenatal setting. Two participants had never been pregnant. Ages of participants ranged from late 20s to late 50s and years working in the field ranged from approximately 1 year to over 20 years, with the majority having worked more than 5 years.

Many themes were identified from the data that related primarily to the perceived impact of working in the prenatal setting and, in the overall study, all participants discussed at length the impact this had on them both personally and professionally. The findings presented here will focus on two major themes, beginning with: (1.) the perceived day-to-day impact due to the nature of the role, in order to set the scene and provide context for counselors’ experiences of working in this area. The findings then focus on: (2.) the challenges faced by genetic counselors when pregnant themselves and working with clients undergoing adverse pregnancy outcomes. While there were many other emergent themes arising from the interview data, these will form the basis of subsequent publications.

As there were no differences found between the responses of Canadian and Australian genetic counselors for the themes discussed in this paper we have not annotated whether the quotes used are from Canadian or Australian genetic counselors in order to protect participant anonymity.

Some quotes have been truncated for ease of reading without altering the meaning of the quote. Where truncation of dialogue occurs it is denoted in the text by “…..”. Pseudonyms have been used throughout this article.

Nature of the Role

When discussing how they experience their work, prenatal genetic counselors spoke extensively about the demanding nature of their role and how they felt it impacted on their view of life. Crisis, grief and urgency were overriding narratives used by genetic counselors when describing what it was like to work in prenatal settings on a day-to-day basis. However, some counselors discussed the difficult nature of the work in a matter of fact way. For them, dealing with patients in crisis/distress was simply part of their role. Many counselors also reported that their lived experience of being a genetic counselor and commonly seeing adverse events occurring in the lives of their clients due to chance, caused them to have a ‘skewed’ perception of the frequency with which adverse outcomes occur. Some counselors described this as a positive thing and felt it put their lives into perspective, and others felt as though it influenced the choices they made in life and is something that needs to be further addressed. Again this theme was discussed in a matter of fact way. Counselors felt as though this was an unavoidable by-product of their work, and it was inevitable that working in this area would alter their perception of life and the frequency of adverse outcomes in some way. Self-reflection is regarded as a crucial skill for practicing genetic counselors, in order to continually refine their counseling skills (McCarthy Veach et al. 2003). These themes indicate that participants had reflected on their experiences, and had come to terms with the fact that this was difficult and emotional work. The discussion around the difficulty of this work indicates that many counselors had worked out ways in which to cope with the personal and professional challenges this type of crisis work entails, although some had not acknowledged the difficulties of working in the area.

The Pregnant Prenatal Counselor

The challenges faced by prenatal genetic counselors when pregnant themselves was an interesting and unexpected theme emerging from the interviews. This topic was discussed by all of the participants including those who had not been pregnant themselves. Unlike the nature of the role and view of life, pregnancy was not discussed in a rational manner, but as an important area that needs to be acknowledged. When exploring the lived experience of participants in this area it is clear that within this data there were two themes occurring: firstly, counselors worried about their own pregnancy and the wellbeing of their own baby; and secondly, counselors worried about the potential impact on clients when being counseled by a pregnant genetic counselor.

Participants discussed at length the worry they felt for their own pregnancy and the wellbeing of their own baby. Counselors reported thinking about this even prior to becoming pregnant and those who had been pregnant reported feeling anxious about the wellbeing of their baby at various stages of pregnancy. While this has not been previously reported in a research study, it has been alluded to in published reflections of genetic counselors (Clark 2010; Hatten 2002; Keilman 2002; Young 2002); As Keilman noted: “It was that kind of anticipatory thinking that genetic counselors often do. Even before we become pregnant genetic counselors spend time exploring ‘what would I do if I had an amnio and my baby was diagnosed with trisomy 21? 45,X? Cystic fibrosis?’” (Keilman 2002, pg 289). Additionally, Young (2002) discussed worrying about the wellbeing of her grandchild when her daughter was pregnant, due to her own experiences of working in the prenatal setting.

Participants also talked about feeling an increased risk perception of fetal anomaly for their own pregnancy, which influenced the testing they chose when they were pregnant themselves. Participants believed approximately 50% of their pregnant colleagues took up invasive diagnostic testing and the other 50% took up screening. Nine participants discussed prenatal testing for their own pregnancy during the interview, five of whom disclosed that they had taken up invasive diagnostic testing without any clinical indication. This represents more than half of participants who discussed prenatal testing in the interview, and 45% of the 11 participants who were pregnant while working in the prenatal setting. Participants viewed this 50:50 uptake of diagnostic testing as ‘balanced’ however, these figures are substantially higher than the population uptake of diagnostic testing without any clinical indication, which was reported to be 0.3% of overall confinements (243 diagnostic tests/69481 confinements) in Victoria, Australia in 2007 (Moreira et al. 2008). Therefore, our findings would suggest that this increased risk perception results in genetic counselors being much more likely to take up diagnostic testing without any clinical indication, when compared with women in the general population. However, it should be noted that the numbers in this study are very small. In addition, genetic counselors have considerably easier access to these procedures (even without clinical indication) when compared with women in the general population, which could be a contributing factor to uptake and may explain the discrepant uptake of testing. Nevertheless, these findings are supported by a quantitative survey conducted in the USA by Roggenbuck et al. (2000), comparing prenatal genetic counselors, obstetric nurses and high school biology teachers. The authors found that prenatal genetic counselors not only had an increased perception of the incidence of birth defects/genetic conditions when compared with the other two groups, they also took up diagnostic testing at a significantly higher rate. In addition, 58% of genetic counselors who reported having a diagnostic test in their pregnancy did so without any medical indication (Roggenbuck et al. 2000).

The theme of ‘tempting fate’ was an interesting finding discussed by just under half of participants. It is apparent participants thought something ‘bad’ would happen to them when they were pregnant themselves because they were the bearer of ‘bad’ news to so many clients in their day to day work. Tempting fate is not a scientific or rational concept; given that counselors have an excellent understanding of, and work with risk often, it is surprising many participants discussed this perception. Whether other healthcare professionals working in the area of fetal medicine would feel similarly is not known.

All of the participants interviewed expressed concern about the impact on clients being counseled by a visibly pregnant genetic counselor. Many felt that clients who were making decisions about whether or not to continue a pregnancy may be influenced in some way if they were counseled by a visibly pregnant counselor. Additionally, some felt as though clients who were experiencing adverse pregnancy outcomes could feel resentful towards the pregnant counselor whose pregnancy was seemingly ‘normal’. This can have an impact on the counselor-client relationship. A recent article by Millward (2010) discussed the dilemma she faced when working as a doctor in a termination of pregnancy clinic while visibly pregnant herself. In this opinion piece Millward states: “I believe that some of the patients I saw for a termination of pregnancy appointment experienced care that was less than ideal as a result of an emotional dilemma spurred on by my pregnant appearance.” (Millward 2010 pg 425). Counselors in our study appeared to have the same concern as they often work with women who are faced with a decision as to whether or not to continue a pregnancy. It appears this dilemma may not be specific to genetic counselors, but could also be relevant to other healthcare professionals who work with women undergoing adverse pregnancy outcomes. However, to the authors’ knowledge there is no other published research in this area. Furthermore, this issue may also be relevant to clients being counseled by healthcare professionals with a visible disability or genetic condition. Clients considering termination of a pregnancy for a fetal anomaly may be reluctant to discuss this with a healthcare professional with a visible condition. Additionally, there is also no published research investigating clients’ experiences of being seen by a visibly pregnant prenatal genetic counselor. While counselors worry about clients’ experiences of being seen by pregnant counselors, there is no published evidence of clients’ perspectives in this area.

Lastly, the concept of self disclosure was discussed as being of concern to almost all participants. In general, counselors are cautioned about self disclosure (Kessler 1992; McCarthy Veach et al. 2003; Peters et al. 2004; Weil 2000). While self disclosure can sometimes help with rapport building, it can also shift the focus of the session from the client to the counselor (Weil 2000) and can influence clients’ decisions (McCarthy Veach et al. 2003). When visibly pregnant, counselors felt as though they were inadvertently disclosing something about themselves just by walking into the room, which made them uncomfortable and in some cases led counselors to attempt to hide their pregnancy. Counselors were particularly worried clients would ask them what type of prenatal testing they had, and then as stated by Nicole, “use that as their gold standard”. Participants were split as to whether or not it was appropriate to inform clients they were pregnant before they saw them. Some reported always disclosing their pregnancy and giving clients the opportunity to request another counselor, while others reported never disclosing their pregnancy prior to seeing a client. In a study about genetic counselors’ experiences of self disclosure with their clients, Thomas et al. (2006) found that counselors who did disclose personal information were most often influenced to do so by clients’ requests for this type of information. The authors report counselors being visibly pregnant themselves as an “obligatory situation” where clients were more likely to ask about the counselor's pregnancy; some counselors reported electing not to see clients when visibly pregnant themselves, particularly clients at risk of abnormalities (Thomas et al. 2006). Six counselors out of the 11 they interviewed reported disclosing information about the prenatal screening/testing they had in their own pregnancy (Thomas et al. 2006). This dilemma about self-disclosure when visibly pregnant is the same concept encountered by counselors in our study and is also relevant to other healthcare professionals. In the family physician literature Morse et al. discuss “inadvertent self-disclosure” as being “unavoidable, such as when a physical characteristic indicates pregnancy or hair loss from chemotherapy” (Morse et al. 2008 pg 836). Furthermore, this concept may also be relevant to genetic counselors and other healthcare professionals who have visible disabilities. In a commentary article about her own experiences of physician self-disclosure Candib states “Like other women doctors, I was at ease in sharing my childbearing and childrearing experiences with patients who were going through similar experiences. The high level of mutuality in these relationships results in enhanced intimacy.” (Candib 1999 pg 357). As a family physician in a small town, Candib discussed this self disclosure in the context of clients with ‘routine’ pregnancies with whom she has an ongoing relationship. Sharing the experience of motherhood, namely “childbearing and childrearing” would not be appropriate when counseling clients with abnormalities who may not have a live born child at the end of their pregnancy. Thomas et al. (2006) recommend genetic counselors use self-disclosure “judiciously” and with a clear purpose. This sentiment is supported by McDaniel et al. (2007) who found no evidence that physician self-disclosure had a positive effect with clients. Alternative strategies such as empathy may be more pertinent to clients and are less likely to appear disruptive or unhelpful (McDaniel et al. 2007; Morse et al. 2008).

A very recent reflection by Kit Clark entitled: “life as a pregnant genetic counselor”, resonates with some of the themes found in our study (Clark 2010). Like our participants, Clark reported that working in the area influenced the testing she had during pregnancy: “Yes I had already done carrier testing for cystic fibrosis and spinal muscular atrophy long before I ever became pregnant and then hastened to get my fragile X carrier testing done once my pregnancy was actually confirmed. Yes, I opted for a CVS with no medical indication whatsoever, at least in part to reassure myself that the chromosomes were all normal even though I wasn't particularly concerned about my risks.” (Clark 2010). However, her motivations for testing appear to differ. Clark reported not being concerned about her risks during pregnancy, and having the testing because: 1) she worked with an excellent CVS doctor and 2) to find out the gender of her baby (Clark 2010). Like the participants in our study, Clark also discussed struggling with self-disclosure when she was visibly pregnant, particularly when pregnant clients asked her to disclose personal information such as “Have you had a CVS?” (Clark 2010). Additionally, Clark reports doing “everything possible to hide [her] pregnancy” and carefully choosing clothing which would conceal her pregnant abdomen; this was mentioned by some of the participants in our study. In reflecting on being pregnant, Clark was able to draw out the nuances of her experience and put it into perspective. Clark was able to see that her own pregnancy enhanced her relationship with clients as she was able to better connect and build rapport. She also reflected on new strategies she had learned to help her set appropriate boundaries and handle self-disclosure (Clark 2010). The experience of sitting down and reflecting on this experience was clearly very useful for Clark; this may be a valuable strategy of reflection for other counselors in this area. While this article has notable similarities and some differences with the themes found in our study, it is a single reflection; and to our knowledge there are no other empirical data in this area.

The phenomenon of countertransference is a possible explanation for the challenges counselors report when pregnant themselves. In the context of genetic counseling, countertransference is defined as the conscious and unconscious way a genetic counselor relates to a client based on the counselor's past experiences of relating to others (McCarthy Veach et al. 2003; Weil 2000). This can result in counselors being emotionally connected with their clients and sharing in the client's burdens/suffering as well as in their joy (Evans 2006). Countertransference can be present in any genetic counseling session and can have both positive and negative effects (McCarthy Veach et al. 2003; Weil 2000). Evans (2006) reports that one of the positive aspects of counselors being affected by countertransference is that it enables “us to reach out to one another and emotionally share by our empathic and compassionate responsiveness.” (Evans 2006 pg 157). However, she also stresses that there can be a negative side to countertransference, “Counselors are exposed to the experiences of their patients who may be shocked, overwhelmed with anxiety or fear, grieving or struggling with relationship difficulties and many other emotional challenges. The genetic counselor is therefore exposed to an emotionally highly-charged environment which can be personally upsetting, challenging or even draining and stressful.” (Evans 2006 pg 157). It is important for counselors to recognize countertransference when it is occurring so that it does not have unexpected or negative effects on the counseling session or on the counselor themselves. Countertransference may explain our results since the counselors empathized and related in some way to their clients. Additionally, counselors seemed to be aware of and were looking out for transference which is the opposite of countertransferece, i.e. the client is relating to the counselor based on his/her past experiences of relating to others. For example, the client may see the counselor as an authority figure such as a teacher or a doctor. Counselors seemed to be concerned about this as illustrated in the quotes about self disclosure. They appeared to be worried that client transference could influence their clients into making a decision that is perhaps not right for them. Transference and countertransference can be a normal part of any counseling session and, while it can be difficult to overcome, it is only harmful when not recognized and reflected on by the counselor (Sahhar 2010; Weil 2000). These phenomena can be difficult to recognize and “they may interfere with the process of communication, empathy, and client decision making.” (Sahhar 2010). Evans states “The counselor can learn to translate these ideas of countertransference and apply or adapt them with the help of regular supervision” (Evans 2006 pg 159). Supervision has been reported to be undoubtedly, one of the most effective strategies for counselors to deal with and reflect on the challenges they face in their work (Hiller and Rosenfield 2000; Kennedy 2000a, b; Middleton et al. 2007a, b; Sahhar 2010). Regular formal supervision is known to help counselors refine their therapy skills as well as feel supported in their work, thereby reducing stress and/or burnout (Hiller and Rosenfield 2000; Kennedy 2000a, b; Middleton et al. 2007a, b). Formal supervision may be a particularly useful method of self care for pregnant genetic counselors because “as a pregnant woman [they] may be more emotionally (and hormonally) vulnerable” (Sahhar 2010). As counselors may be relating to clients differently, discussing these issues in a professional and supportive environment can help to recognize and overcome any challenges faced, as well as reflect on the positive aspects of this enhanced connection with clients.

This study provides notable insights into the lived experience of prenatal genetic counselors. The findings indicate that working in the prenatal setting does have an impact on genetic counselors at a personal as well as professional level, particularly when they are pregnant themselves and working with clients who are having adverse pregnancy outcomes.

This is an important and relevant area not only for genetic counselors but also for other healthcare professionals who work with fetal anomaly, however, there has been minimal research in the area. We recommend that these issues of pregnancy could potentially be added to the curriculum of graduate training programs to ensure counselors are aware of and have considered countertranference issues that may arise when they are pregnant themselves, prior to being in the situation. Drawing attention to this area with trainees will better equip them to recognize countertransference when it is occurring so that it does not impact negatively on a session with a client. Additionally, it is important for counselors to continually reflect on their practice through regular professional supervision and to be able to discuss any challenges they are facing with their peers in an open and considered manner.