Genetic counseling graduate training to address religion and spirituality in clinical practice: A qualitative exploration of programs in North America
Abstract
Patients receiving clinical genetics services often navigate emotionally difficult situations and may utilize their faith as a source of support, an aid in decision-making, or a core coping strategy. Although patients have expressed interest in discussing their religious or spiritual (R/S) beliefs with their genetic counselor (GC), GCs may avoid such conversations because they feel they do not have the necessary skills to discuss R/S beliefs (Reis, Baumiller, Scrivener, Yager, & Warren, 2007). This qualitative study explored how GC programs in North America currently prepare their students to discuss R/S matters with their patients. The aims of this study were to identify (1) the R/S topics genetic counseling programs currently cover in the curriculum, (2) how genetic counseling programs evaluate their students within the R/S topics and activities that are included in the curriculum, and (3) the value or importance placed on R/S training by genetic counseling program directors. Leaders of 12 (36%) of the 33 eligible GC programs at the time of the study participated in a semi-structured phone interview. Their responses were coded using open and axial coding techniques and analyzed using grounded theory. Results revealed that R/S issues are often covered during the psychosocial portions of the curriculum through writing assignments, in class exercises, and role plays. Almost all participating programs include information on pastoral care services, but have little to no training about specific R/S beliefs or the use of spiritual surveys. While participating program directors emphasized that it is critical for students to be prepared to hold conversations about patients' R/S beliefs, the strategies used to prepare students are inconsistent and often not evaluated. We provide suggestions for enriching the R/S training in genetic counseling graduate programs in order to prepare students to facilitate discussions around patients' religion and/or spirituality in genetic counseling sessions.
1 BACKGROUND
Discussing identifiable genetic causes of health problems often impacts the emotions of individuals and their family members (LeRoy, McCarthy Veach, & Bartels, 2010). As patients navigate the complexities of genetic disease, a variety of coping techniques may be called upon. In times of crisis, it is common for people to look to their religious and/or spiritual (R/S) beliefs for support (Bartenbaker Thompson et al., 2016; Sagaser et al., 2016).
According to the General Social Survey of 2018, 78% of Americans identify as religious (15% very religious, 38% moderately religious, and 25% slightly religious) and 88% of Americans identify as spiritual (29% very spiritual, 35% moderately spiritual, and 24% slightly spiritual) (How Religious is the Respondent, 2018; How Spiritual is the Respondent, 2018). The terms and concepts of religion and spirituality are often used interchangeably, but differences have been delineated (De Jager Meezenbroek et al., 2012; Koenig, King, & Brenner Carson, 2012; Seth et al., 2011). Individuals who self-identify as ‘religious’ may practice a specific denomination or tradition and participate in personal and/or communal activities such as praying, reading sacred texts, and attending congregational worship (Koenig et al., 2012; Sagaser et al., 2016; Seth et al., 2011). Spirituality, however, is typically broader and more fluid than religion and can include both religious and non-religious views (Koenig et al., 2012; McCarthy Veach, LeRoy, & Bartels, 2003; McCarthy Veach, LeRoy, & Callanan, 2018; Sagaser et al., 2016; Seth et al., 2011). Spirituality has been defined as, ‘One's striving for and experience of connection with oneself, connectedness with others and nature, and connectedness with the transcendent’ (De Jager Meezenbroek et al., 2012).
Bartenbaker Thompson et al. (2016) surveyed 70 patients who had genetic counseling in various specialties and found that 40 (57%) of the patients indicated that genetic counselors (GCs) should be trained to discuss R/S topics. Twenty-five (42%) of the 60 patients who identified as R/S indicated that they would have liked to discuss with their GC how their R/S beliefs related to the reason for referral (Bartenbaker Thompson et al., 2016). This study concluded that GCs should be prepared to have R/S conversations with their patients (Bartenbaker Thompson et al., 2016).
Previous literature has indicated that many GCs avoid discussing R/S topics with their patients (Leroy et al., 2010; Reis, Baumiller, Scrivener, Yager, & Warren, 2007). Reis et al. (2007) interviewed 127 GCs and found that 51 (40%) had not conducted an R/S assessment in the clinic setting during the last year. When asked why they did not have these conversations, GCs reported lack of time in the session, perceived lack of the necessary skills, and uncertainty about what to do with the information (Reis et al., 2007). To address these issues, Reis et al. (2007) suggested that R/S education for genetic counselors be strengthened. This study was developed as a follow-up to the Reis et al. (2007) study to begin to characterize R/S education in genetic counseling graduate programs.
Building a relationship between the GC and the patient is central to the practice of genetic counseling (McCarthy Veach, Bartels, & LeRoy, 2007). McCarthy Veach et al. (2007) state: A relationship can be built by striving ‘to understand patient values, culture, and perspectives’. Because R/S beliefs often play a role in patient values, culture, and perspectives, a conversation about how a patient's R/S beliefs may contribute to decision-making, coping, and support systems may strengthen the counselor–patient relationships. The goal of R/S-related conversations should be to ‘convey openness and nonjudgmentalness and connect empathically with patients' worldviews’ (McCarthy Veach et al., 2018, p. 973). Considering that 76% of the GCs in the Reis et al. (2007) study indicated that the R/S conversations they had in clinic were initiated by the patient, GCs should be prepared to engage meaningfully in these conversations when they arise. GCs also need sufficient insight into R/S matters to refer patients to pastoral care resources, as necessary (Bartenbaker Thompson et al., 2016; McCarthy Veach et al., 2018; Sagaser et al., 2016).
In an effort to meet patient needs and provide holistic care, other healthcare professions have integrated R/S curricula into their training programs. Nursing programs have reported including coursework on the influence of cultural beliefs on spirituality, R/S topics in palliative care, conducting a spiritual assessment, and active listening as a form of spiritual care for patients (Greenstreet, 1999; LaBine, 2015; Lemmer, 2002; Westera, 2017). The American Counseling Association developed the Competencies for Addressing Spiritual and Religious Issues in Counseling in 2009 (Cashwell & Watts, 2010). These competencies indicate a counselor should be able to acknowledge personal R/S biases, describe various R/S belief systems, perform a spiritual assessment, and acknowledge and respect the patient's R/S views (Cashwell & Watts, 2010).
An entry-level genetic counselor is expected to be able to ‘Identify factors that affect the learning process such as…religious and cultural beliefs’ as codified in the Accreditation Council for Genetic Counseling's Practice-Based Competencies (PBCs) (Doyle et al., 2016, p. 877; ‘Practice based’, 2015). The American Board of Genetic Counseling examination also includes questions that require the test taker to ‘Assess client and/or family cultural/religious beliefs, traditions, and values’ (Examination Specifications, 2017). To adequately prepare students to meet these professional expectations, genetic counseling graduate programs must incorporate R/S topics into the curriculum, in some fashion. With this in mind, a question emerges: How are genetic counseling programs in North America preparing their students to discuss religious and spiritual matters with their patients? The aims of this study were to identify (1) the R/S topics genetic counseling programs currently cover in the curriculum, (2) how genetic counseling programs evaluate their students on R/S topics and activities that are included in the curriculum, and (3) the value or importance placed on R/S training by genetic counseling program directors.
2 METHODS
2.1 Sample and procedure
This study was reviewed and approved by the University of Arkansas for Medical Sciences Institutional Review Board (IRB# 217794). Eligible participants in this study were Program Leadership (Director, Assistant Director, or Director of Curriculum, etc.), or their designee, of genetic counseling programs in North America with full accreditation at the time of the study from the Accreditation Council of Genetic Counseling (ACGC) (‘Accredited Programs’, 2018). Programs with new program or probationary accreditation status were not eligible. Potential participants were contacted through publicly available email addresses accessed from the Association of Genetic Counseling Program Directors' website (https://agcpd.org). An initial request for participation was sent on June 18, 2018, to the 33 programs that met the criteria. The invitation described the nature and aims of the study and indicated that participants who completed the interview would be entered into a drawing for one of two $25 gift cards to Amazon.com. Interested participants were instructed to respond to the email to schedule a 30-min semi-structured telephone interview. A second invitation was sent on July 26, 2018, to the 26 eligible programs that did not respond to the first invitation. Prior to the scheduled interview, participants were sent the interview guide (see Appendix). All interviews were concluded by August 29, 2018.
2.2 Interview guide
A novel interview guide was developed by the authors using suggestions for R/S education for GCs from the Reis et al. (2007) study and R/S curriculum requirements for nursing, clinical counseling, and pastoral care (Cashwell & Watts, 2010; Greenstreet, 1999; LaBine, 2015; Lemmer, 2002; Westera, 2017). The 15 questions on the interview guide encompass the potential roles of the genetic counselor regarding R/S topics as well as common techniques used in genetic counseling education (Morgan & Calder, 2016; Reis et al., 2007; Weil, 2000).
2.3 Data collection
All participants were interviewed by telephone by the principal investigator. Twelve (36.4%) of the 33 eligible genetic counseling programs participated in the study. For two programs, two participants were interviewed together and provided congruent responses. At the beginning of each interview, program demographics were obtained. Each participant was asked all questions on the interview guide. The interviews were semi-structured so that the order in which the questions were asked was modified to facilitate conversational flow with each participant. Follow-up questions were asked throughout the interview to gain further clarification of the participants' answers. Shortly after the interview, a follow-up email of thanks was sent to each participant.
The interviews lasted between 24 and 57 min and were recorded on the iPhone app, TapeACall Pro. The recordings were initially transcribed by Temi.com's speech recognition software. The transcriptions were compared to the recordings and edited for accuracy by the principal investigator. All recordings, transcripts, and study materials were stored on a secure server.
2.4 Data analysis
The transcripts were organized, selected at random, read numerous times, coded using open and axial coding techniques, and analyzed using grounded theory (Birks & Mills, 2011; Charmaz, 2006; Elo et al., 2014; Patton, 2002). One author organized and coded the transcripts based on the questions on the interview guide, while a second author analyzed and coded the transcripts of the full interviews (Elo et al., 2014; Patton, 2002; Sandelowski, 1995; Tuckett, 2004). Because one of the authors had a conflict of interest with one of the programs that participated in this study, a third author evaluated the full transcript for that program's interview. All transcripts were coded and analyzed by two authors. The readers met and discussed themes they discovered independently and agreed on the majority of the themes identified. The overall inter-rater reliability was 0.94.
Data saturation refers to the point when ‘no new information or themes are observed in the data’ (Guest, Bunce, & Johnson, 2006). Saturation was not reached for aim 1 which was to identify the R/S topics genetic counseling programs currently cover in the curriculum. Each of the 12 (36.4%) genetic counseling programs that participated in this study to discuss R/S beliefs at different points in the curriculum, teach different R/S skills, and use different education techniques to navigate the topic. Although clear themes emerged, saturation could not be met with this amount of variability because new themes related to this aim may have been identified if other eligible programs had participated in the study. The variability of these data are presented in the results section under the Aim 1 subheading. Saturation was reached for aim 2 which was to identify how genetic counseling programs evaluate their students on R/S topics and activities that are included in the curriculum. These data are presented in the results section under the Aim 2 subheading. Saturation was reached for aim 3 that was to identify the value or importance placed on R/S training by genetic counseling program directors. These data are presented in the results section under the Aim 3 subheading.
3 RESULTS
3.1 Demographics
The 12 participating programs represented all of the regions in North America as defined by the National Society of Genetic Counselors (NSGC; National Society of Genetic Counselors, 2018) and had graduated at least five classes of students (see Table 1).
| N (%) | |
|---|---|
| Program location | |
| NSGC Region 1—CT, MA, ME, NH, RI, VT, CN, Maritime Provinces | 1 (8.30) |
| NSGC Region 2—DC, DE, MD, NJ, NY, PA, VA, WV, PR, VI, Quebec | 3 (25.0) |
| NSGC Region 3—AL, FL, GA, KY, LA, MS, NC, SC, TN | 2 (16.6) |
| NSGC Region 4—AR, IA, IL, IN, KS, MI, MN, MO, ND, NE, OH, OK, SD, WI, Ontario | 4 (33.3) |
| NSGC Region 5—AZ, CO, MT, NM, TX, UT, WY, Alberta, Manitoba, Sask | 1 (8.30) |
| NSGC Region 6—AK, CA, HI, ID, NV, OR, WA, British Columbia, Yukon | 1 (8.30) |
| Number of graduated classes | |
| 5–10 | 4 (33.3) |
| 11–20 | 3 (25.0) |
| 21–30 | 3 (25.0) |
| 31–40 | 2 (16.6) |
Note
- N = 12 programs interviewed.
3.2 Aim 1: Identify the R/S topics genetic counseling programs currently cover in the curriculum
3.2.1 Didactic curriculum
We touch on it (R/S) in the fall semester in terms of the many different things that play a role in where a patient is coming from, how they perceive genetic results, what interpretations they may have of genetic results. (Program 3 Participant 1)
But we do try to again get our students thinking about, you know, who might that patient be looking to for support when making a difficult decision or you know, what supports does this patient or family have in place. (Program 2 Participant 1)
| Topic | N (%) |
|---|---|
| How R/S impact decision making | 11 (91.7) |
| Religious support systems | 7 (58.3) |
| R/S views on pregnancy termination | 5 (41.7) |
| R/S views on death | 5 (41.7) |
| Religious values | 4 (33.3) |
| R/S coping techniques | 4 (33.3) |
| Jewish culture | 4 (33.3) |
| Student's personal R/S beliefs | 4 (33.3) |
| R/S components of palliative care | 3 (25.0) |
| How R/S impact the grieving process | 3 (25.0) |
| R/S prenatal issues | 3 (25.0) |
| Transference/countertransference | 3 (25.0) |
Note
- N = 12 programs interviewed.
Pastoral care
I bring in someone to work with students on some of the interpersonal aspects…not just what pastoral care is, but how someone in the pastoral care department would work with a family. I also do want to eliminate the notion that pastoral care only represents specific religion…within a pastoral care department you can have a rabbi, you can have a Muslim cleric, you can have a Catholic priest, you can have a Baptist preacher, and you could have someone who has no theological training. (Program 4 Participant 1)
We actually have two lectures, one in the first year and one in the second year by people on our pastoral care team…one of them is more involved in around the children's hospital and the other one is more involved in like palliative care. (Program 9 Participant 1)
Spiritual surveys
They get some introductions to the ones (spiritual surveys) in the Cultural Competency Toolkit. There's a whole supplemental activity - it's case number seven…there's a whole bunch of assessment tools and as part of going through that case, they have to look at some of those tools and figure out which questions they can incorporate in their own practice. (Program 12 Participant 1).
Specific religious beliefs discussed in lecture
I know…they're definitely exposed to Islam, Buddhism and Christianity and Hinduism, and I'm not positive about Judaism, but I'd be surprised if they're not. (Program 7 Participant 1)
We don't have quite as many (patients) in terms of who identify as Hindu or Buddhist. But we, you know, we touched on those a little bit. But I would have to say that, you know, the three big ones, Christianity, Judaism and Muslim/Islam are the ones that we really mainly cover. (Program 11 Participant 1)
We also have a genetic counseling seminar class where students are constantly reviewing cases or…articles that are presented in the media or you know… So a lot of, you know, religious, cultural stuff comes up in that class casually just organically with the topics for which we're discussing. (Program 2 Participant 1)
Sort of spontaneously every year we have students who have different religions in the class, so, they chime in from their perspective, you know, on different topics including we have a lecture on LGBTQ, when we're talking about abortion, when we're talking about, you know, funeral customs, when we're talking about all kinds of things, the students themselves often have a variety of religions that they can share their perspective on. (Program 3 Participant 1)
You aren't going to be able to memorize every religion and even if you could, that doesn't mean everybody adheres to it and therefore the importance of questions and learning more about how the religion plays a role in their life and what it means to them is more important than understanding all the intricacies of each religion. (Program 1 Participant 2)
Our larger focus is going to be about using that very basic knowledge of religious belief then focus in on what's important to your client. How does that play out in their own lives? So letting the client be the guide and the educator really of the counselor. (Program 5 Participant 1)
Each individual patient is so unique that you almost can't predict anything in how they're going to respond, well, or you shouldn't. I think they're really not focused on learning about particular religious doctrine per se, but more on how to assess where each individual patient is at. (Program 6 Participant 1).
In speaking with our chaplain and we kind of did the most common religious affiliations that they see requests for or that we encounter in the clinical setting. (Program 11 Participant 1).
It's also where the students are being trained. That's (Christianity) the most common religion they're going to see here. (Program 4 Participant 1)
Personal biases
We don't want students…thinking that the problem is that bias exists. But rather, the problem is that they/we rarely recognize, acknowledge, and take steps to keep bias in check. So we want our students to walk out of here with some checkpoints where they know how to prime themselves for interactions with people who come from different religions or cultural backgrounds…and not to assume that that is a report card on their soul and that they are now a bad person because they have unconscious bias. (Program 8 Participant 1)
| Assignment type | Prompt |
|---|---|
| Paper | Define your own culture |
| What are your personal biases and how will you address them professionally? | |
| Explore your own death: talk to a family member about how your death will be handled | |
| Journal entry | Write about a patient you saw who has different beliefs than you do. How did you manage that? How would you do it differently? |
| Write about your personal thoughts on abortion | |
| Go walk around a new neighborhood. Sit down and observe for 5–10 min. Write about what you see | |
| Write about your personal thoughts on end of life care | |
| Exercises | Stereotype your classmates and share where your stereotypes are coming from |
| Share home remedy cures for the common cold. Discuss which cures are founded in science and which are not. What would you do if a patient expressed similar ideas about genetics? | |
| Answer the 50 bias questions from Psychosocial Genetic Counseling (Weil, 2000). Share your answers with your classmates and discuss | |
| Complete the Harvard bias surveys and discuss your answers (https://implicit.harvard.edu/implicit/takeatest.html) | |
| Take the Strengths Finders quiz and discuss how your strengths will help and harm you professionally (https://www.gallupstrengthscenter.com/home/en-us/strengthsfinder) | |
| Go through the Genetic Counseling Cultural Competence Toolkit (http://www.geneticcounselingtoolkit.com/cases), write a self-reflection, and discuss perspectives on culture and religion |
Role plays
I think it's still a difficult thing for students to talk about because I think they're often nervous about offending somebody by asking the wrong question. I think it's one of the harder psychosocial counseling skills to have that confidence to know that you can ask about it in a sensitive way…Talking about religion can be viewed as taboo. I think that they struggle a little bit with that which is why we want to, at least in the standardized patient session, put it in there as an evaluation tool (Program 12 Participant 1)
| A Catholic patient finds out her baby has anencephaly. She is torn because she has always believed in the sanctity of life and does not know if she should have an abortion or not |
| A patient asks the genetic counselor to pray for them during the session |
| The mother of a pediatric patient tells the genetic counselor that she prayed about it, and God told her that He was going to fix her child |
| The patient's church has a prayer chain, and when enough people pray, they will be healthy |
| A patient tells the genetic counselor that she prayed about the situation and she does not understand why God did not fix it |
| An older woman who has cancer tells the genetic counselor that she believes God is punishing her for her past sin by giving her cancer |
| The patient practices a religion that the genetic counselor is not familiar with. The GC has to help identify sources of support for the patient |
| A prenatal patient finds out that her baby has trisomy 18, and she asks the genetic counselor ‘Why would God do this to me?’ |
| A cancer patient close to death initiates a religious/spiritual conversation about death. The genetic counselor has to identify support resources for them |
| A prenatal patient finds out that her baby has trisomy 21 and tells the GC that she must have walked under a ladder/past a black cat and that is why her baby has Down syndrome |
3.2.2 Clinical rotations
Reliance on clinical experiences
It really is case based learning and students - when they're doing their clinical rotations, (they will) encounter patients who have a variety of religious beliefs and perspectives. Students are trained to elicit from patients the extent to which their faith will influence their decision making or their coping or adaptation to adverse genetic events. So, it's much more in the clinical training part that they learn how to do this, I would say, rather than in a didactic session. (Program 6 Participant 1)
We have such a huge amount of diversity here that from a clinical standpoint, we know that they're (students) going to experience people from all different backgrounds - socioeconomic status, religion, ethnic, racial, everything. (Program 1 Participant 2)
Supervision and reflection
We start a 1:1 process of supervision that goes throughout the rest of the program. Where they meet with a genetic counseling supervisor who is not part of their clinic so this is just a person that's dedicated to them that meets with them one hour every week to help them develop as a counselor…furthering the self-awareness and bringing that into sort of who are you as a person and how that affects your client…They're required to audio record in their clinical rotations and bring in tapes to supervision. So a lot of what we do there of course depends on the client and what happens in clinic. But certainly, I would say that talking about religion and spirituality happens in many of the cases. So that would be a combination of being learned through the clinic itself and then on top of that how we're processing that in supervision. (Program 5, Participant 1)
3.3 Aim 2: Identify how genetic counseling programs evaluate their students on R/S topics and activities that are included in the curriculum
3.3.1 Not evaluated
So when I asked our students to write a paper about their personal biases, I certainly don't grade that. That doesn't feel appropriate. It's either complete or not complete… So I don't think we really have a good clear assessment to be honest. (Program 2, Participant 1)
But in class I would say they are not specifically assessed on that. I think they are requested to participate and it's sort of a yes or no thing, but I'm not sure that our program has evolved to the point where we can identify learning objectives for didactic, uh, for the didactic curricular components that would have to do with religious beliefs. (Program 6, Participant 1)
3.3.2 Evaluated
For some classes there are going to be some like questions on exams. There's certainly some peer evaluation around roleplays, but mostly it's like, you know, how are you participating in the discussion and you know, is that a robust participation? (Program 9, Participant 1)
So with the diversity course we went back and forth as to whether we wanted to do a grade and we ultimately decided that we wanted to take the grade out of it. We wanted it to be a thoughtful process where we wanted an open discussion and wanted engagement but not grades. And so we told them that their pass/fail grade was going to be related to strictly how much they engaged in class. (Program 11, Participant 1)
3.4 Aim 3: Identify the value or importance placed on R/S training by genetic counseling program directors
3.4.1 High importance
Well I think it's very important – especially the spirituality part because humans, even people who claim atheism, have a spiritual component in their life. So I think the ability to discuss spirituality is absolutely critical. (Program 4 Participant 1)
I think it behooves our students to teach them how to be comfortable on how to approach this and how in some ways to not think of it as something that is so unique and different. It is a part of who people are and so you're missing a huge part of who many people are if you don't figure out if religion and spirituality are important to that person in that crisis moment. (Program 10 Participant 1)
I think you absolutely have to be willing to have this conversation…There are many ways in which we all come to important decisions and there are many ways that we all adapt and cope and you know, for us to feel comfortable asking about family support, or mental health, you know, community support and so forth. But then to leave out a huge one in terms of spirituality that's kind of lacking and I think that can be offensive to many patients. (Program 11 Participant 1)
I think overall, as part of the overall cultural competency, it's like very, very, critically important because you just can't understand where somebody's coming from if you're not getting their perspective. And that's so much a part of their perspective. (Program 12 Participant 1)
3.4.2 Role of the genetic counselor
It's important to investigate particularly in the instance when there is a crisis point or a decision that often involves religion or spirituality if that's important to a person. I think many times otherwise patients bring it up to us and…when they do it's important to investigate at that point to respond or reflect and get them to expand on why they brought that up. (Program 10 Participant 1)
You absolutely should respond to it and if you're not capable of responding to it, then you should be making referrals to pastoral care…Is it our duty to bring it up? Do you bring up everything for your patient? No, absolutely not. (Program 7 Participant 1)
Certainly to respond when the client brings it up, but also…to be brave enough to initiate the conversation if there are clues that there is a R/S component that's contributing that the patient hasn't yet felt comfortable to voice. (Program 8 Participant 1)
I think it is our role to explore these (R/S) with clients and I think that means often initiating. This is something we work on very much with the students in terms of what feels most comfortable and what works within your broader style and approach to a client because everyone is different. I think at the very least it is our responsibility to offer up opportunities…And I think there are times when you want to be even more direct about that depending upon what the response is that you get from a client…maybe other clues that you may have, or if you have reason to believe that there may be a particular religious struggle or a difficulty someone's having, or on the contrary this might be an important source of support for them…It's your responsibility then to help them explore whether that might be a place to seek support. (Program 5 Participant 1)
I'm not going to have (R/S) conversations unless the patient brings it up, but I think in the case of difficult, unexpected, or bad news and how a patient is going to adapt to that, those are things that I think you really have to bring that information (R/S) into play. (Program 11 Participant 1)
I think it depends on the indication for genetic counseling. I think when somebody is dealing with a challenging situation, whether that means a difficult decision, a pending loss, whenever you're dealing with the issues of mortality, I think that that's definitely a reason to comprehensively assess what their coping strategies are or what their decision making models are and ask that question to see if that's part of it. (Program 12 Participant 1).
4 DISCUSSION
Although genetic counseling graduate program leaders in this study stated that it is very important for students to be able to address R/S issues with patients, there is variability among programs, and most programs do not have evaluation methods in place. Several themes emerged that are worthy of further discussion.
4.1 Lack of background information and geographic implications
Although the location of the graduate program may greatly influence the kind of R/S beliefs students will encounter in clinic, very few programs introduce their students to the specific R/S belief systems that are prevalent in their area (‘America's Changing’, 2015). The lack of formal didactic coverage of R/S topics leaves students to initiate their own study of R/S belief systems or to rely on their clinical supervisors for this information.
Due to the small number of genetic counseling programs, students often have to relocate for their training, and they are likely to encounter unfamiliar R/S belief systems (‘America's Changing’, 2015). While it is important for students know how to appropriately ask patients about their R/S beliefs, it may be challenging for students to fully prepare for the R/S conversations they may encounter in the clinic setting without background information on R/S belief systems.
4.2 Clinical supervisors are sometimes expected to cover R/S psychosocial counseling
Learning how to discuss R/S beliefs with patients is a developmental process that relies on strong basic psychosocial skills, clinical experience, and individual comfort (Anderson, 2009; Sagaser et al., 2016). Ideally students would have opportunities to learn about R/S issues in the classroom, practice related skills, and then apply their knowledge and skills with more confidence in real-time clinic settings while engaging in self-reflection (Greenstreet, 1999; LaBine, 2015). However, one of the critical findings of this study is that over half of the participating programs reported relying on clinical supervisors to provide some or all of the R/S education and applications in genetic counseling practice. Clinical supervisors fulfill an essential role in identifying strengths and weaknesses of genetic counseling students and helping them develop as professionals (Callanan, McCarthy Veach, & LeRoy, 2016; Suguitan, McCarthy Veach, LeRoy, Wherley, & Redlinger-Grosse, 2019). Programs vary in their clinical requirements including the number of rotations each student has, the length of the rotation, the clinic sites and specialties offered, and the number of available supervisors (Callanan et al., 2016). There are limitations on the ability to predict and control what sessions students see in clinic (Callanan et al., 2016). Some students may see many sessions involving R/S matters, while other students may not have as many or any opportunities. Relying purely on the clinic experience is a somewhat unpredictable approach to training.
It is also important to take into consideration supervisor comfort with R/S and how that will influence learning opportunities. The published literature indicates that 40% of GCs do not discuss R/S topics with their patients because they do not feel they have the necessary skills to do so (Reis et al., 2007). It follows that those GCs may also be uncomfortable teaching these skills to GC students due to lack of confidence, experience, or comprehension (Reis et al., 2007). It may be beneficial to allow students to shadow a pastoral care professional once or twice to allow them to observe how these professionals navigate R/S conversations. This is not to suggest that GCs should perform the role of a pastoral care professional, but rather that this complementary exposure would familiarize GC students with these services and help them navigate the sensitivities of R/S issues more effectively.
Clinical supervisor comfort and teaching abilities around R/S topics may benefit from enhanced R/S training within the graduate program. As students receive more robust training around R/S topics, supervisors may also grow in their abilities to address R/S concerns. Equally with further supervisor training opportunities, GC supervisors are likely to become more comfortable with having R/S conversations with their patients over time, with further practice, and/or with additional personal study (Callanan et al., 2016; Kennedy, 2000; Suguitan et al., 2019).
4.3 Inconsistent didactic curricula
Participants expressed that because of the emotional challenges and difficult decisions genetic counseling patients may be facing, R/S are important and relevant topics that are commonly covered in the psychosocial portion of the GC curriculum. The variable, inconsistent, and at times, limited didactic emphasis placed on R/S issues does not align with the high level of importance assigned to them by the programs.
Although all programs cover R/S didactically in some way, no consistent content among the participating programs emerged. This variability is likely due to several factors. Because genetic counseling is an expanding field, the body of relevant information is growing. Therefore, the amount of material that genetic counseling graduate programs must cover is extensive and R/S issues might compete with other valuable topics for time in the classroom (‘Practice based’, 2015; ‘Standards of accreditation’, 2013). Further, there are limited R/S teaching resources available and no standards or guidelines from the GC profession for integrating R/S curricula into genetic counseling training programs. The PBCs outline expectations of an entry-level genetic counselor, and the ACGC leaves it to programs to implement the activities, expectations, and outcomes.
4.4 Students are not evaluated on the R/S curriculum
While gaps in the didactic curriculum exist, another critical finding of this study is that most programs do not evaluate their students on the R/S information that is covered. Further, the genetic counseling programs that evaluate their students on this topic used limited means of evaluation (ex: participation). In contrast, nursing programs evaluate R/S topics through a variety of assignments, case studies, targeted assessments, and the national board exam (Brush & Daly, 2000; Callister, Bond, Matsumoro, & Mangum, 2004; Catanzaro & McMullen, 2001; Lantz, 2007; Wallace Kazer, Hetzel Campbell, Grossman, Shea, & Lange, 2008). Without robust evaluation, assessing competence is impossible and there is no way to know whether the efforts made in the classroom and clinic adequately prepare students to navigate R/S issues with their patients (Wallace Kazer et al., 2008).
The lack of didactic coverage and evaluation do not align with the high importance identified by the interviewees. Additional research is warranted to evaluate how R/S training is related to both student and patient outcomes. Such research would be informative for determining how R/S training in genetic counseling graduate programs could be modified to enhance student learning and improve patient care.
4.5 Recommendations
Because all programs identified that GCs should be able to respond to patients who bring up their R/S beliefs in the counseling session, it would be beneficial for students to have explicit opportunities to practice these skills. If, as indicated by the programs, GCs are expected to initiate R/S conversations based on clues patients provide, then a classroom learning activity could be used to help students identify and effectively address those clues.
- Role plays are a useful instructional tool to train students how to respond when a patient brings up R/S issues in a session (Xu et al., 2016). Role play prompts, like those listed in Table 4, can be utilized to help students prepare for conversations of this nature in clinic (Xu et al., 2016). It was beyond the reach of this study to identify what clues GCs use to identify whether it is appropriate to initiate an R/S conversation with a patient, but once identified, these clues could be shared with students. Spiritual surveys can be used when initiating an R/S conversation (Anandarajah & Hight, 2001; Puchalski & Romer, 2000; Reis et al., 2007; Warren, 2019). Because R/S beliefs can be complex topics, lack of training or preparation to engage in these conversations at a basic level is concerning. Students need enough instruction and experience during their training to know how to apply various psychosocial assessment and counseling techniques to R/S topics that arise in clinic. If a patient brings up their R/S views, GCs can use their psychosocial counseling skills to explore the patient's comments or concerns within the genetic counseling scope of practice. Chaplains can be called upon as the experts in R/S matters for complex conversations.
- Considering geographic location can influence the R/S beliefs that students may encounter in clinic, it may benefit students to have background information on the belief systems they are likely to encounter (‘America's Changing’, 2015). Programs can learn from the on-site pastoral care team which R/S beliefs are predominant in their geographic area. The program can then proactively incorporate basic information about those belief systems within the didactic coursework and/or provide the students with resources (See Table 5). Modeling active inquiry into the prevailing R/S themes in the local community can positively influence students’ future practice—especially as they relocate and need to learn about new R/S beliefs systems (‘America's Changing’, 2015). On occasion, GCs may need to research beliefs and values of specific patients in order to better understand their views. It is important to note that religious beliefs and values are not universal among individuals who practice a particular religion and individuals may hold different beliefs and values from official doctrinal positions or policies (McGuire, 2008). Therefore, patient-centered care must be a priority for genetic counselors during conversations around an R/S topic that arises in clinic. Making assumptions about a patient’s beliefs or inclination toward certain options based on religious affiliation is ill-advised. Using challenging exercises and role plays during training can increase students’ comfort to apply their psychosocial counseling skills in a variety of R/S clinical scenarios.
- Previous studies have identified that there is a need for more genetic counseling clinical supervisor training in general (Eubanks Higgins et al., 2012; Lindh, McCarthy Veach, Cikanek, & LeRoy, 2003). Of the genetic counselors that participated in the Lindh et al. study, 80.7% indicated that a workshop on clinical supervision would be beneficial (2003). General clinical counseling training programs have more established clinical supervisor training and have identified that clinical supervision enhances student comfort surrounding multicultural counseling topics including religion and spirituality (Constantine, 2001; Toporek, Ortega-Villalobos, & Pope-Davis, 2004). Consequently, clinical counseling supervisor training frequently includes multicultural topics (Constantine, 2001; Kyung Lee, McCarthy Veach, & Leroy, 2009; Toporek et al., 2004). To identify needs for supervisor training, genetic counseling programs could conduct an internal assessment of their supervisors regarding their expertise, interest, and the frequency and relevance of R/S topics in their practice. Based on this feedback, genetic counseling programs can help supervisors receive additional training on how R/S topics impact patients and how to address R/S issues. A Continuing Education Unit event hosted by the program or an NSGC webinar could provide trainings that may include teaching supervisors how to conduct a spiritual survey. The program could share with supervisors what students are learning didactically so they can support consistent goal setting and student development.
- Lastly, there are several ways that programs could consider evaluating the R/S information and skills to which students are introduced. Assessment of student interests and concerns may allow the program to develop strategies to meet students’ perceived and expressed needs for information and skills. Competency-Based Medical Education (CBME) evaluation strategies may be useful. Unlike learning objectives, CBME defines expected levels of understanding for practice (Charles et al., 2016). CBME utilizes both self and instructor evaluations, allows students to develop at their own pace, and creates opportunities for students to revisit the areas they have not yet mastered (Charles et al., 2016). If the clinic experience remains the predominant environment for learning about this topic, then clinical supervisors should have the opportunity to evaluate students in this area (Lindh et al., 2003). Programs could consider including an R/S section on a clinical evaluation form completed by supervisors for each student (Eubanks Higgens et al., 2012; Lindh et al., 2003). This strategy would clearly formalize expectations and encourage discourse between supervisors and students regarding R/S issues in clinic. Programs would also then know which students are lacking in these experiences, so it can be a specific area of practice in further clinical rotations.
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Religious Traditions and Prenatal Genetic Counseling by Rebecca Anderson Anderson, R. R. (2009). Religious traditions and prenatal genetic counseling. American Journal of Medical Genetics, 151, 52–61 |
| Genetic Counseling Cultural Competence Toolkit Case 7 (https://geneticcounselingtoolkit.com) |
| Facilitating the Genetic Counseling Process: Practice Based Skills Second Edition By Patricia McCarthy Veach, Bonnie S. LeRoy, & Nancy P. Callanan (Chapter 9, pages 271–274) |
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Spiritual Surveys (HOPE, FICA, BELIEF, SPIRIT etc.) Anandarajah, G., & Hight, E. (2001). Spirituality and medical practice: Using HOPE questions as a practical tool for spiritual assessment. American Family Physician, 62(1), 81–89 Dobbie, A. E., Medrano, M., Tysinger, J., & Olney, C. (2003). The BELIEF Instrument: A preclinical teaching tool to elicit patients' health beliefs. Family Medicine, 35:316–319 Maugans, T.A. (1996). The SPIRITual History. Family Medicine, 5(1):11–16 Puchalski, C., & Romer, A.L. (2000). Taking a spiritual history allows clinicians to understand patients more fully. Journal of Palliative Medicine, 3,129–138 |
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Journal Articles Bartenbaker Thompson, A., Cragun, D., Sumerau, J. E., Cragun, R. T., De Gifis, V., & Trepanier, A. (2016). “Be prepared if I bring it up:” Patients' perceptions of the utility of religious and spiritual discussion during genetic counseling. Journal of Genetic Counseling, 25, 945–956. https://doi.org/10.1007/s10897-015-9922-9 Sagaser, K. G., Hashmi, S. S., Carter, R. D., Lemons, J., Medez-Figueroa, H., Nassef, S., … & Singletary, C. N. (2016). Spiritual exploration in the prenatal genetic counseling session. Journal of Genetic Counseling, 25, 923–935. https://doi.org/10.1007/s10897-015-9920-y Seth, S. G., Goka, T., Harbison, A., Hollier, L., Peterson, S., Ramondetta, L., & Noblin, S. J. (2011). Exploring the role of religiosity and spirituality in amniocentesis decision-making among Latinas. Journal of Genetic Counseling, 20(6), 660–673. https://doi.org/10.1007/s10897-011-9378-5 |
Because only 36% of genetic counseling programs participated in this project, further studies are needed to explore whether the results of this study accurately represent genetic counseling program R/S education as a whole. The overall process of genetic counseling program curriculum development, execution, and evaluation warrants further study. Exploring the role, preparation, and comfort of clinical supervisors in teaching, mentoring, and evaluating students on R/S topics would be valuable. Additional studies could identify other areas of the PBCs students receive more training in clinic than in the classroom in order to better support the training of clinical supervisors. To aid in student development, understanding what GCs identify as clues that lead them to initiate an R/S conversation with their patients would be another potential area of study. Further, because the GC student perspective on R/S education has not been explored, surveying students about their experiences, attitudes, and needs would provide further insight.
4.6 Study limitations
Limitations of this study include possible selection bias as individuals who value this topic or believe their program covers it well may have been more likely to participate. Although this study used standard qualitative research procedures, upon evaluation of the results, co-authors identified additional follow-up questions that could have been asked such as how programs use this topic to encourage self-care among students. Lastly, exploring the perspectives of clinical supervisors was beyond the scope of this study.
5 CONCLUSION
This study presents the current strategies some genetic counseling programs are implementing to introduce their students to R/S topics for clinical practice. The programs identified that it is very important for students to be prepared to hold conversations with patients about their R/S beliefs, yet R/S skills are not evaluated and the education strategies are variable both within and across the participating programs. Practical suggestions are provided to address gaps in the curriculum and better prepare students to navigate R/S topics with patients.
Author Contributions
Alise Murray contributed to the conception or design of the work, acquisition, analysis or interpretation of data for the work; drafting the work and revising it critically for important intellectual content; final approval of the version to be published; agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved; and had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis; Nancy Steinberg Warren contributed to the acquisition, analysis, or interpretation of data for the work; revising the work critically for important intellectual content; final approval of the version to be published; and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved; Katherine Bosanko contributed to the acquisition, analysis, or interpretation of data for the work; revising the work critically for important intellectual content; final approval of the version to be published; and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved; Lori Williamson Dean contributed to the conception or design of the work, acquisition, analysis or interpretation of data for the work; drafting the work and revising it critically for important intellectual content; final approval of the version to be published; agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved; and had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis
ACKNOWLEDGMENTS
The research presented in this manuscript was conducted while the first author was enrolled at the University of Arkansas for Medical Sciences Genetic Counseling program. This paper was done while the first author was in training and was a degree requirement.
HUMAN STUDIES AND INFORMED CONSENT
This study was reviewed and approved by the University of Arkansas for Medical Sciences Institutional Review Board (IRB# 217794). At the time, it was not deemed human subject research as the data being collected were about the genetic counseling program rather than the participant. The study was described in the invitation to participate, and informed consent was obtained at the beginning of the interview.
Conflict of Interest
Nancy Steinberg Warren is the owner of the Genetic Counseling Toolkit, Inc. Alise Murray, Katherine Bosanko, and Lori Williamson Dean have no conflicts of interest.
Open Research
DATA AVAILABILITY STATEMENT
All recordings, transcripts, and study materials are stored on a secure server at the University of Arkansas for Medical Sciences, College of Health Professions. The data from this study have not been shared. The data will not be shared moving forward because the identity of the programs that participated in the study could be drawn from the transcripts of the interviews.
