Abstract
Females are disproportionately affected by infertility, and Counselor Education and Supervision (CES) doctoral students are predominantly female. Using phenomenological approach female CES doctoral students with infertility diagnoses were interviewed. Six themes emerged from the interviews: younger is better for conception; familial and societal messages; infertility knowledge; triggers; academics and infertility; something wrong with me, regret, and others don’t understand. Clinical implications and future directions are provided to promote social justice by bringing awareness and amplifying the voices of people suffering from a disability and a disease that is rarely recognized as either.
Infertility stands as a multilayered challenge for female doctoral students in several key factors: significant impairment, age-related modifiers, high female representation, and elevated depression in conjunction with anxiety symptomology. Infertility is a reproductive disease characterized by the inability to become pregnant after one year of unprotected intercourse (WHO, 2016). As well as being a disease, infertility is also a disability that “substantially limits” a major life activity (Bragdon vs. Abbott et al., 1998). There is a wealth of data that indicates students and reproductive-age women, show a lack of knowledge in areas such as the correlation between age and fertility, sexual intercourse and timing, and basic family planning knowledge (Hickman et al., 2018).
Advanced maternal age is the medical classification of women that are attempting to conceive in the latter stages of their fertility lifespan. This is important to the proposed study because age is the biggest predictor of fertility success (Somigliana et al., 2016). Long-established data indicates female fertility starts to decline at age 30 (American College of Obstetricians and Gynecologists, 2020). Yet, the more education a person has the longer they view the window of fertility (Jensen et al., 2018). With advanced maternal age (formerly geriatric pregnancy) starting at age 35, this subject is important to both counseling students seeking advanced degrees, and the clients they counsel (Collict et al., 2018). Though demographic data related to the average age of CES doctoral students is elusive, the University of Nevada puts the average age of their CACREP-accredited doctoral students at 31.7 years old (Freeman et al., 2019). To put this age in the context of the risk of infertility, a healthy 30-year-old female has a 20% chance per cycle of becoming pregnant, and a healthy 40-year-old has a 5% chance per cycle of getting pregnant (ASRM, 2019). Per the Centers for Disease Control and Prevention, at any moment nearly 20% of women will suffer from infertility and this figure increases with age (CDC, 2019).
Females make up the vast majority of Council for Accreditation of Counseling and Related Educational Program (CACREP) students, 82.51% female at the masters level, and 76.89% at the Doctoral level (Council for Accreditation of Counseling and Related Educational Programs [CACREP], 2018). Females also make up the majority (62.13%) of professors at CACREP schools (CACREP, 2018). According to the Centers for Disease Control ([CDC], 2019), infertility/impaired fecundity affects 12% of all women aged 15–44 and 23.6% of married women aged 15–44. This study seeks to understand the lived experiences, fertility expectations, and knowledge of female counselor education and supervision (CES) doctoral students with diagnoses of infertility. Women are disproportionately affected by infertility, and CES doctoral students are disproportionally female (CACREP, 2018).
Depression and anxiety are often overrepresented in women with infertility diagnoses (Fallahzadeh et al., 2019; Rahmati et al., 2019). Data indicates that women who delay child-birthing are at increased risk of infertility and have higher levels of anxiety (Molina-García et al., 2019). Additionally, quality-of-life appears to be lower for women with infertility diagnosis than for women with normal fertility (Boulet et al., 2017). Since Lester and Yang's (Ethics Committee of the American Society for Reproductive Medicine, 2015) 50-year longitudinal study indicated higher fertility rates correlate with lower suicide rates, there has been a dearth of information on infertility and suicide. Suicidal women were found to be more likely to be childless, and women who were unable to have at least one child following a fertility evaluation had higher risks of suicide than those who were able to have a child after a fertility evaluation (Shani et al., 2016).
The Current Study
The purpose of this qualitative phenomenological study was to discover the lived experience of infertility among female CES doctoral students and their expectations, experience, and knowledge of infertility. Specifically, the primary sub-questions were answered; (a) when and where participants first learned about infertility, (b) if/what effects the experience of infertility has had on the participant’s career and/or education, (c) if/how the experiences of infertility affected the participant’s worldview, (d) the age participants expect to have their last child (if expected), (e) the participants stated ideal age to have a child (if desired), and (f) how have your expectations of fertility changed over time (it at all)?
Methods
Analytic Strategy: Phenomenology
Phenomenology seeks to describe the shared, common, or invariable meaning among research participants based on their experiences of a phenomenon (Creswell, 2013). This is accomplished by seeking to capture the essence of a phenomenon and relate how that essence is described and functions through the lived experience of those in contact with the phenomena (Peoples, 2021). A key tenet of phenomenology is that natural knowledge of the world comes through the examination of lived experiences (Husserl, 1931).
Transcendental phenomenology was chosen as the research method and philosophy because it encompasses the tools that will allow for a description of the lived experience of several people removed from the biases and presuppositions of the researcher (Peoples, 2021). Transcendental phenomenology uses what is referred to by Husserl (1931) as an Epoch, or the deliberate abstention of the typical, presumed, or expected, in order to reserve judgment and to observe something for what it is absent presuppositions. To adhere to this methodological tradition, the researcher will journal to identify biases and bracket them (Peoples, 2021). This will effectively produce no formal assumptions in the research.
Design and Rationale
The word “essence” is used to refer to the subjective description and experience of a phenomenon among participants to find what remains invariable among those descriptions and experiences (Jensen et al., 2018). For this research, the subjective experience was documented from interviews to identify the invariable essence of the phenomena across participants. The research question being asked is what are female CES doctoral students’ experiences and knowledge of infertility? Interview questions were structured around the experience and effect of infertility as follows:
Please describe your experience with infertility in as much detail as possible? Anything else? When and where did you first learn about infertility? Anywhere else? (Annual appointment, doctor appointment, through friends, co-workers, media, school.) What effect has the experience of infertility had on your career and education, if any? How has the experience of infertility affected your worldview, if at all? At what age do you expect to have your last child? What is your ideal age to have a child (whether that be past, present, or future)? If you do have children, would you have changed the timing? Sooner? Later? Is there anything I did not ask in this interview that you would like to tell me? How was it for you to complete this interview?
Bracketing
Bracketing is the notion that all personally held beliefs and understandings of the researcher are notwithstanding, and are suspended in the interest of focusing on the lived experience of the participant (Peoples, 2021). The overarching purpose of bracketing is to connect with the phenomena as it was lived by the experiencer and not filter those experiences through contemporary scientific thought or preconceptions held by the researcher (Dörfler & Stierand, 2020).
Participants
The current study protocol was reviewed and approved by the dissertation committee and the university's institutional review board. The inclusion criteria for participation were to be biologically assigned female at birth, have a diagnosis of infertility, be 18 or older, and be currently enrolled in a CES doctoral program. For this study “female” was described as being biologically female. The study excluded women who are solely seeking to adopt, as the focus was on childbearing. The study excluded biological males, and/or any person that did not have the biological potential to give birth. Gender was not an inclusion or exclusion criterion. Infertility is described as a reproductive disease characterized by the inability to become pregnant after one year of unprotected intercourse (WHO, 2016). The sample of participants was derived from students attending Counselor Education and Supervision doctoral programs.
This study secured 10 qualified participants, and saturation started to be apparent after five participants with all themes fully saturated at eight participants. Participants were sent informed consent forms requesting signatures and availability to be interviewed. The participants were informed of the inclusion and exclusion criteria before the interviews were conducted. Participants were obtained for interviews via purposeful, criterion sampling through the Counselor Education and Supervision NETwork – Listserv (CESNET-L), an online, professional list-serve for counselors, counselor educators, and supervisors that provides a platform for discussion as well as allows for solicitation of research participants.
Participant homes were geographically diverse and were derived from nine different U.S. states, including Florida, Iowa, Illinois, Ohio, Oklahoma, S. Carolina, Texas, Tennessee, and Virginia. Relationship status included married (60%), unmarried (30%), and divorced (10%). The age ranged from 29 to 42, with the mean age of the participants being 35.2. Participants reported ethnicities that included Caucasian (60%), Asian (10%), two or more (20%), and Latinx/Hispanic (10%). The mode and median range of yearly, household income reported was US$50,000–US$100,000.
Procedures and Data Collection
Demographic information was collected from virtual interviews. The interviews were comprised of seven semi-structured, open-ended questions. The interviews were conducted via Zoom virtual meetings and were audio-recorded for later transcription. The interview protocol followed Kvale & Brinkmann's (Lester & Yang, 1992) basic outline for interview protocols.
After conducting the interviews, the researcher removed any personally identifiable information from the recordings before transcription. Interviews ranged from approximately 30 to 55 min. Follow-up questions were asked as needed for clarification, but the primary focus was on the seven primary questions that reflected the purpose of the study. The interviewer reminded the subjects of resources in the unlikely event of any adverse reactions to the study and followed up with an email with the resources listed again with their US$25 Amazon gift card. The study included appropriate disclosure, informed consent, and the use of basic interviewing and counseling skills. Data storage primarily consisted of biometric, and password-protected files that are backed up on the researcher's computer. Transcripts with corresponding de-identifying codes were stored in a locked file cabinet when not in use.
Data Analysis
Thematic analysis was also utilized in the transformation of raw data into research results. Thematic analysis is a qualitative analytic tool that helps identify, analyze, and report themes in data (Braun & Clarke, 2006). Thematic data analysis followed the six-step approach developed by Braun and Clarke (2006) and Lincoln and Guba (1985) starting with a thorough familiarization of the data by the researcher, formulation of initial codes, seeking themes, reviewing themes, defining themes, and producing a report.
Initial familiarization with the data included reading all the data several times, journaling, bracketing, transcribing, and noting any initial takeaways (Braun & Clarke, 2006). In the subsequent phase, the codes were then organized into emerging themes, and then care was taken to ensure the codes and the themes worked together to produce a “thematic map” that could help the researcher keep track of the data through analysis (Braun & Clarke, 2006). Lastly, a report was produced that related the data and analysis thereof to the research question through evidence and coherence (Braun & Clarke, 2006).
The adjectives used before “participants” in each theme have a specific meaning congruent with the traditions of phenomenological research: “most” describes a fully saturated theme; “many” describes a theme that was represented in at least 50% of participants; and “some” is used to indicate a relevant but unsaturated theme (Peoples, 2021).
Credibility and Trustworthiness
Credibility was addressed by spending adequate time with the participants, interviewing them in their natural environment, and seeking their in-depth knowledge of the phenomenon, as experienced by the participants; this increased validity by limiting misinterpretation and capturing what was relevant (Creswell & Poth, 2018). Dependability, another way to increase validity, comes from seeking peer review from unconnected peers who can ask questions about methods, results, and conclusions (Creswell & Poth, 2018). The study underwent an external audit, whereby two unaffiliated researchers assessed the study to increase rigor and trustworthiness and determine if the findings represented the data (Creswell & Poth, 2018). Confirmability, which is associated with objectivity and neutrality, was additionally sought through a process of researcher reflection, identification of bias, and bracketing of known biases (Cypress, 2017). Also, the interviewer engaged in reflexivity via a journaling post-interview to document known biases, expectations, personal values, and interests (Lincoln & Guba, 1985).
Ethics
Participants were informed via informed consent that all interviews would be conducted on Zoom. Interviews were audio recorded and identified by a number not attached to any identifiable characteristics of the interviewees. Following transcription, the recordings were erased, and all other identifying data were destroyed. The participants were informed that they could withdraw from the study at any time for any reason. After concluding the interview, the participants were debriefed and instructed to seek counseling from their institution of higher education or a local crisis hotline if they experienced any distress. Though the risks of this research were minimal, risks were still present and were identified, anticipated, and mitigated for any potential risks of harm. The ethical issues involved in this study were largely addressed via the institutional review board’s acceptance of the study. Confidentiality was maintained by assigning participants codes that did not directly identify them. The interview process was both audio and video, only the audio was recorded (under biometric and password-protected applications) for later transcription. Only researchers had access to the raw data.
The risk of harm to participants from the interview process was mitigated due to the interviewer being a Licensed Clinical Practicing Counselor. Additionally, at the end of the interview, the interviewer briefly discussed neutral topics in line with Labott et al. (2013) and Nowell et al. (2017) to lessen any negative mood elicited by the interview. Another consideration is that of researcher harm which includes potentially disagreeable statements from participants; distressing stories of lived experiences; concerns over meeting expectations; and professional risks involved in conducting research (Stahlke, 2018).
Results
The purpose of this qualitative research study was to explore the lived experiences of infertility among CES doctoral students: their (a) expectations, (b) experiences, and (c) knowledge of infertility and to find the essence of that phenomenon. The following data is presented in the form of themes that illustrated the invariable experiences among the participants in this study. The six themes included: younger is better for conception; familial and societal messages received; infertility knowledge; “triggers;” academics and infertility; “something wrong with me, regret, and others don’t understand.”
Younger is Better for Conception
Age was a consideration for most participants and a reference point concerning their education, career, relationships, fertility, and family planning. Questions related to age produced data that suggested participants would have attempted to conceive children earlier if they had known more about their fertility limitations sooner; suggesting that most participants were still planning to try to conceive at an age higher than what is medically ideal. The mean age participants stated they planned to have their last child was 2 years after the official medical cut-off for the designation of advanced maternal age, formerly geriatric pregnancy. The mean age of participants was 35.2; the mean age of participants who answered as ideal for starting a family was 28.4.
A woman's age is the single biggest determinant of fertility success (Jensen et al., 2018; Somigliana et al., 2016). Overwhelmingly, participants stated that they wished they had tried to start a family earlier, and/or expressed that the ideal time to conceive is earlier in the female lifespan. The participants were highly accomplished and educated women. The literature supports the notion that the more education a woman has the fewer children she is likely to conceive and the longer she will view her window of fertility (Jensen et al., 2018).
Interestingly, age-related misinformation persisted in this group despite being immersed in the experience of infertility. This is evidenced by answers to the question (regardless of the present age) when the ideal age would be to have a final child. The mean answer to this question was 37 years old, a full two years past the cut-off for advanced maternal age. This data supports the aforementioned literature that indicated the higher the level of education the longer the window of fertility is believed to be (Jensen et al., 2018).
Coextensively, the average age participants stated was the ideal time to start a family was 28 years old. What the data on age and fertility appear to suggest is both a recognition that “younger is better for conceiving,” and the belief that “I still have time.” It may be tempting to view this discrepancy as hopeful, but it also may support literature that indicates women overestimate the success of reproductive interventions (Bernardi et al., 2020).
Familial and Societal Messages Received
Family and societal messages informed the participants’ understanding along with their present infertility statuses and value systems. Most participants communicated beliefs, influences, pressures, and expectations derived from familial and social messages related to fertility and their infertility statuses. Many of these messages started in their family of origin and echoed throughout broader societal messaging. Family messages often stayed the same regardless of the fertility status, often pressuring participants regarding having children, either to conceive their own biological children at an early age or not conceive at all. Participants expressed messages ingrained consciously and subconsciously that shaped their understanding of fertility.
One participant explained the incongruence between a normal life plan and infertility. Many are worried about perception and acceptance. However, most participants reported holding on to messages they received from their family of origin that, everything will work out and it will be OK in the end.
Infertility Knowledge
This theme consists of where and how initial infertility knowledge was obtained. Infertility knowledge is comprised predominantly of anecdotal knowledge, the observation and experience that infertility is not talked about, and knowledge from sex education with the message that “it only takes one time.” For the purposes of this study, anecdotal knowledge consists of the stories and experiences participants heard from family, friends, or acquaintances that informed their understanding of infertility. Most participants did not start their journey of infertility with any formal understanding of infertility; as stated in interviews. A sub-theme identified, along with where knowledge of infertility is derived from, is that infertility is not talked about. Infertility may not be talked about in sex education at all.
“It only takes one time” is an oft-used phrase to describe the potential of pregnancy to adolescents. Many participants echoed messages from adolescence whereby they received warnings against pregnancy and developed the understanding that it is very easy to become pregnant. The messages many participants mentioned from formal sex education was that pregnancy was easy along with no mention of infertility as a topic or concern.
Triggers
Triggers as a theme were often identified in association with media exposure, conflicting emotions related to fertility news from friends and family, and financial stress. Most participants stated triggering events via social media and media generally. Participants described updates on friends and family increasingly coming from various social media outlets. Many participants described feelings of joy for others but were also saddened and conflicted when faced with fertility news. Frustration and dual emotions related to others’ fertility news were common among participants. News of baby-related events and invitations from social media was also triggering to most participants. Another trigger was the financial commitments inherent in infertility treatment.
Academics and Infertility
A key theme that most participants reported was the challenge of balancing a doctoral education with the demands of infertility. How doctoral students balanced academics and their infertility diagnoses were unique findings in this study. Most participants corroborated the challenge of academic work and fertility treatments. One participant stated that infertility has affected her productivity while another participant revealed the heavy effects on her experience with academics.
The stress involved in meeting the demands of a doctoral program and also managing medical appointments was common among most participants. Most participants described the competing demands of doctoral education and undergoing infertility treatments. Most participants described complications due to COVID-19 Global Pandemic health restrictions, protocols, and lockdowns that limited access to infertility medical care and changed their academic routines. Participants expressed delays in receiving healthcare, disruptions to fertility protocols, changing educational schedules, altered routines, and stress from not being able to have partners or family at hospital and doctor visits.
Though most participants saw the pandemic as a complication filled with inconveniences, there were benefits many participants mentioned such as increased use of video conferencing and the convenience of doctoral programs going virtual allowing for increased privacy and flexibility. In summation, this participant statement encompasses most participants’ feelings related to COVID-19. “Yes, like infertility is really stressful and you’ve got that on your plate, along with like everything else, you are juggling a pandemic and a Ph.D. program.” The way participants went about processing and understanding their infertility included common elements such as bargaining, personal appeals to faith, and searching to make meaning out of why they have infertility.
Something Wrong With Me; Regret; and Others Don’t Understand
Emotional reactions to infertility diagnoses and medical treatments include myriad feelings that appear to represent the toll of longing and working toward the uncertain goal of a completed pregnancy. Most participants referred to something being wrong with them and many participants willingly assigned blame for infertility to themselves citing past self-care inadequacies. Participants’ statements indicated that they internalized their infertility diagnosis as something wrong with them and due to their actions, as opposed to a medical limitation or something exclusively outside their control.
Some participants’ statements indicated infertility as something wrong with them evidenced through questioning their worth as a partner. Other participants spoke about the sense of being flawed and sensing stigma. A sub-theme indicated by most participants also illustrated a sense of regret over what they could have done to have a better fertility status. Another participant reflected on her self-care and infertility during the doctoral program while another participant spoke of guilt. Data revealed participants feeling like something is wrong with them, and regret comported with “not feeling understood.” The sub-theme of “others don’t understand” was illustrated by most participants as involving the arduous task of explaining to others what was wrong and their limited fertility status.
Participants explained the difficulty in communicating with families about the subject of infertility. Most participants stated explanations of infertility to others were marked by frustrated communications, time spent confronting misconceptions, and adoption of the onus to clarify fertility misnomers. Many participants reported feelings of isolation and feeling misunderstood when confronted with questions related to the time commitment of treatments.
Discussion
Several themes emerged from the data and are discussed below in the context of the existing literature and phenomenological theory. The six key themes include, younger is better for conception; familial and societal messages; infertility knowledge; triggers; academics and infertility; “something wrong with me, regret, and others don’t understand.”
Familial and Societal Messages Received
Most participants communicated beliefs, influences, pressures, and expectations derived from familial and social messages related to fertility and infertility status. Family and social messages are important because such messages may shape behavior and how participants conceptualize their infertility struggles. The pressure to have a biological child was present and many participants were caused distress by perceived or actual deviations from that life plan that included that potential.
The dominant message most participants received from family anecdotes was that “everything would work out and be OK.” At face value, this message is both comforting and misleading with the potential to prolong the exploration and management of reproductive disabilities and other serious underlying health concerns associated with reproductive pathology. The premises and assumptions found in most messages such as, be patient, good things come to those who wait, what's meant to be will be, be happy for others and wait your turn, and it will happen when you least expect it, underlie most of the social and familial messages that participants reported.
The aforementioned messages conflict with well-established biologic realities and could lead to women neglecting their reproductive health by deferring to familial and conventional anecdotal wisdom over developmentally and medically established information. Most participants struggled with messages derived from family and society as they conflict with their present ability to conceive children. Exposure to social and familial messages potentially creates expectations to keep up developmentally with stages of family planning that are presently inaccessible to most participants of this study. That exclusion may lead to feelings of isolation and disconnection and may lend a partial explanation for emotional distress.
Infertility Knowledge
This theme is important because it provided insight into how the participants developed their current knowledge of infertility; knowledge on that they based their educational, career, and family planning decisions on. For our purposes, anecdotal knowledge is inclusive of informal fertility knowledge from the individual's family history, including personal fertility stories from family, friends, and acquaintances, media messages, and knowledge derived from educational and societal messages.
Participants stated that what they took away from their sex education classes was that it was very easy to become pregnant and that not becoming pregnant, infertility, and reproductive disabilities were not mentioned. For many of these participants, sex education was more of a moralistic lesson rooted in abstinence, fear of sexually transmitted diseases, and pregnancy. This disconnect between what a lifetime of accumulated knowledge leads an individual to believe and then their limited options once diagnosed with infertility could partially help explain the over-representation of depression and anxiety in the population as shown in the literature (Fallahzadeh et al. 2019). Additionally, the past emphasis on not getting pregnant combined with the message that it is easy to get pregnant may help explain why many participants find an infertility diagnosis so hard to process; to the point of feeling inadequate and stigmatized.
Sex education curriculum and anecdotal knowledge are not necessarily formal knowledge from well-established and/or medical authorities and may help partially explain why reproductive-age CES students have the perception that IVF/ART/MAR is more successful than is statistically possible (Bernardi et al., 2020; Prior et al., 2019). Furthermore, survivors’ bias, whereby the women focus on those that got through infertility with “no problem” was present. The survivors’ bias inherent in most of the participants’ sources of anecdotal knowledge was consistent and is best described as supporting the theme that “everything works out in the end.”
Triggers
This theme involved triggers and media with sub-themes of conflicting emotions related to fertility news and financial stress. For the participants, triggers of emotional distress were often precipitated by media exposure to fertility-related content as participants described others celebrating events associated with the advent of conceiving children. New baby announcements were particularly stressful as participants revisited the “why” of their fertility struggles and wrestled with the dual emotions of wanting to be happy for their friends and family, but also feeling sad for their situation.
Triggers were often directly connected with participant beliefs from family and social messages. What is significant in this population is how profound the impact news of pregnancies, baby showers, child birthdays, and fertility-inspired events and stories were to participants. Many participants described avoidance, disinterest, and sadness related to events that they would ideally like to celebrate for themselves. This theme is valuable in that it is important to understand precipitants to distress in a certain population and their effects on that group. Participants reported conflicting emotions, and feelings related to longing for a child of their own conflicted with celebrating child-oriented events for someone else. The inability to celebrate for others often leads to secondary feelings of guilt, and shame. The literature supports the correlations between reproductive pressure and shame; deviation from an accepted parental path is associated with shame and guilt (Danila & Baban, 2018).
Most participants were concerned with funding their goals to conceive children even if they had insurance that covered portions of infertility treatments. The theme of high conception costs associated with infertility treatments is not new data and is well cited (Asch & Marmor, 2019). Though financial information is abundant, it is also marred in misinformation, and often underestimates the actual costs involved. Doctoral students who encounter the unexpected expense of fertility treatments may find that they are faced with a choice between spending money on a doctorate education and realizing their family planning goals.
Academics and Infertility
Understanding the challenges to completing a doctoral education for different demographics is important because it directly influences whether a student from that group will be able to successfully complete an academic program. Further complicating the matter is the personal nature of the disability and the association with sexual processes; something that is traditionally highly private and not spoken of publicly.
Wagi et al. (2022) and Somigliana et al. (2016) indicated a gap in university health services related to pregnancy planning and infertility which may affect education. Most participants spoke of the negative impacts on their academic productivity. Medical treatments compete for time and money in a busy doctoral student schedule, and cancellations and absences were common occurrences among most participants.
Most participants noted the commitment required for both academic and fertility pursuits often created conflicts between the two. Conflicts manifested in demands for time and financial resources as well as the ability to fully commit to both school and infertility protocols. This is important to the understanding of what may keep a CES doctoral student with infertility from successfully completing their program and/or considering it as an option in the first place. As data related to the pandemic showed, some participants reported that virtual classes were essential to sustaining their participation in the doctoral program.
COVID-19
Access to care was disrupted as fertility protocols were delayed and processes and procedures for attending medical appointments were altered. Husbands, mothers, and best friends were no longer able to attend myriad diagnostic and surgical procedures with the participants. The full extent of stress attributable to seeking reproductive care in a pandemic is not known.
Paradoxically, the pandemic appears to have helped many participants positively. For some participants, the pandemic offered flexibility, time at home to recover from medical care, and the opportunity to structure their schedules in a way that allowed them to continue their education and attend their medical appointments. Once the pandemic is over, it may be helpful to retain the COVID-19-precipitated accommodations that all students received as options for students diagnosed with infertility. The flexibility necessitated by the pandemic could serve as options or accommodations for students with infertility diagnoses in the future.
Similar to Elizabeth Kubler-Ross’. Stages of Grief (Stahlke, 2018), participants went about processing and understanding their infertility through phases of bargaining, personal appeals to faith, and searching to make meaning out of why they have infertility. Many participants found it challenging to reconcile their faith and familial messaging with their inability to conceive. Most participants sought out a guiding principle or logic from which to explain their infertility. Religious influences and family messages often played a role in searching for answers to why they struggled to conceive. One established precursor to infertility is delaying conception and this has been associated with higher levels of anxiety (Molina-García et al., 2019).
Many participants stated feelings of loneliness and isolation and those experiences are supported by the literature and were not surprising (Tiu et al., 2018). Descriptions that described the infertility experience as encompassing the “lowest lows and deepest sadness” along with representing an “open wound” were common and not novel given that published research indicates global symptoms of infertility are equivalent to cancer patients (Domar et al., 1993). Phrases that mention feelings of dread, being on a rollercoaster, and feeling stigmatized may reflect resistance to and fatigue of a process that changes how one life.
Something Wrong With Me, Regret, and Others Don’t Understand
Most participants made a statement about something being wrong with them, often owning that statement as a fundamental truth whereby they willingly assigned blame to themselves. Feeling fundamentally flawed is unique to this study. Self-blame is a coping skill along with social disengagement that is found in the literature (Nagórska et al., 2021).
Most participants also indicated a sub-theme of regret over what they could have done to have a better fertility status. In addition, isolation, referenced in this study and the literature on infertility may be exacerbated by the feeling that others don’t understand. Unique to this study is the theme that participants did not feel that others understood what an infertility diagnosis meant or entailed. It may be that the subject of infertility is traditionally linked with women's health and sexuality and is inherently mired in misunderstanding due in part to a lack of open communication. The woman may feel that their symptoms are too personal to share and too traumatic to fully and adequately explain.
The fact that IVF has been a viable reality for over 40 years and yet only 17 states mandate the opportunity for coverage helps explain that awareness and understanding are still not widespread. The perception that IVF is more expensive compared to other common medical procedures, and even viewed as elective, is further evidence that the broader group environment is not conducive to understanding at the individual level (Ethic, 2015).
Implications
This investigation illustrates several challenges unique to CES students with infertility diagnoses. Counselor educators, administrators, students, and affiliated stakeholders should be aware of the needs of students with the disease and disability of infertility. It should be within the reach of a CES department and university to recognize, meet, and accommodate any student with an unexpected disability with established physical, psychological, and scholastic effects.
Advocacy is both a mandate professionally and institutionally through the CACREP and ACA Code of Ethics. Underrepresented populations vulnerable to attrition must be recognized and their needs accommodated if possible. Given the life-stage and demographic overlap between CES students, subjects of family planning, and infertility, it is likely that infertility will be something that a CES student will encounter either personally, through another peer, student, client, or supervisee (Ansell & Tadros, 2022). Even if a CES professional feels infertility is outside the scope of their competence and interests, they need to be able to manage an initial interaction with a potential client, student, or supervisee and be able to refer them to the proper resource(s).
The fact of the matter of infertility and education is that 77% of women aged 25–34 without children stated their intention to have children in the future (Daugherty & Martinez, 2016). The landscape is such that if women choose to delay childbearing for higher levels of education (Prior et al., 2019), they should be able to do so from an informed position. Furthermore, this study's data indicates extreme stress around trying to complete a CES doctoral degree with an infertility diagnosis.
A positive implication of this study is that it provided insight into an underrepresented group and offers an increased awareness of this population within CES student bodies. Specifically, demographic data (gender and age) correlates with the end of the developmental process of childbearing. This stage in life overlaps with the timing of their doctoral education. Additionally, this study provides CES students with the knowledge they need to make informed decisions for their fertility and their educational goals. The findings of this study give credence to the assumption that, if CES students have basic fertility knowledge in which to make informed decisions related to the intersection of education and fertility they are more likely to make decisions congruent with their goals.
Further implications from this study's data may be helpful to academic institutions as they grow in awareness, consider student needs, and plan, and deploy resources that may help CES students with infertility make informed choices for their education and their families. Furthermore, if some attrition is related to infertility struggles, academic institutions can brainstorm and work to create options for their students’ successful matriculation and graduation.
Recent CES graduates may illuminate the effects of family planning post-scholastic goal completion. When recruiting for this study many recent post-doctoral students inquired about participating. This appears to be an opportunity to study another segment of the infertile CES population. Indicated in this study is that women's healthcare and education appear proficient at educating students against unplanned pregnancy as well as normalizing the intentional delay in conception. It may be beneficial to strive for a more well-rounded narrative when it comes to fertility information as it is presently disseminated among university students. This study supports the suggestion by Wagi et al. (2022) and Somigliana et al. (2016) for universities to offer pre-conception and infertility healthcare services.
Clinical
Clinically speaking, CES students whose professional identity and role often includes counseling, and mentorship, may need to be able to have informed conversations with their clients and/or supervisee around the subject of infertility (Ansell & Tadros, 2022). In addition, it is not the clinician’s place to privilege one value system over another. In the case of infertility, the value of delaying conception without adequate education related to the consequences of such actions is the currently accepted narrative by the majority. Counselors would do well to expand this conversation to include the values, beliefs, and future goals of the client as well as an array of potential actions. What may be missing clinically is the acknowledgment that for many people conceiving a child has more purpose and inherent meaning than many endeavors in life. Additionally, the currently accepted narrative of delayed conception and family planning is not without its own medical, social, and emotional consequences. It is well within the role of the clinician to be cognizant of the values, needs, and expectations of their clients, even when it may be at odds with the dominant socially accepted narrative of delayed conception.
Limitations
Limitations of this study are similar to other phenomenological research and include a relatively small sample size, resource limitations including time, limited researchers (one), funds, and biases within the sample of participants (Peoples, 2021). Additionally, this study was restricted to women assigned to female at birth and did not include the experiences of males assigned to male at birth. Males make up a significant proportion of the infertile population and were not addressed in this study in any way. When considering infertility among CES doctoral students, this study is limited to the experiences of those involved in the gestation of another human. It is understood that a percentage of data will be lost to response bias.
Another potential limitation is the recruitment of participants. All the participants were derived from one listserv, limiting the potential for participation by participants outside the reach of the listserv. Additionally, participants responded from nine states and only two of those states have insurance mandates that offer various degrees of infertility coverage. Conceivably, the lived experiences and thus the data may have been different if a higher percentage of participants were from states that offered insurance coverage. It is believed that this limitation is mediated by the data that dispels finances as a major determinant of infertility care (Vichinsartvichai et al., 2019). In addition, a potential limitation was virtual interviewing.
Future Research Directions
Given the somatic and psychological stress involved in infertility treatments, it would have been beneficial to gather data related to each participant’s self-care practices. As it stands, it is not known if there is a need for more counseling or academic services, etc. based on this study's data. Data on partners of CES students with infertility diagnoses is another place where future research could expand; such as how would the infertility experience of a CES student change if it was their partner with an infertility diagnosis? Additionally, what interactions have students with infertility diagnoses had with their university that may have influenced their experiences, if at all?
A finding of this study was that misinformation was established early in the family of origin and persisted, but what sustained it, inhibited it, or mediated it? Additionally, CES is not the only professional population that could be studied, and future research may benefit from looking at social work, school counseling, psychology, nursing, and others within the field of education and healthcare. Future research on this subject may do well to look at differential aspects of different types of infertility. For example, how does the experience differ between CES students with idiopathic infertility versus infertility with a specific etiology? Also, is there a difference in stress levels between online CES students diagnosed with infertility versus traditional brick-and-mortar CES students diagnosed with infertility? This study revealed multilayered barriers to well-being found in socially induced self-blame and misinformation; COVID-19 academic and healthcare constraints; increased financial burden; and trouble with doctoral program requirements in conjunction with infertility treatment upkeep. The aforementioned establishes a strong case for further development and support in related institutions and organizations.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
