Abstract
There is a growing trend worldwide to offer fertility preservation to newly diagnosed cancer patients, but little research exploring the experience of fertility preservation among this population exists. Our aim was to explore fertility preservation among female cancer survivors in South Africa. We conducted interviews with 10 women who received fertility preservation at fertility clinics in Cape Town and Johannesburg, South Africa. Interviews lasted between 38 and 76 min and were audio recorded, transcribed, and then entered into ATLAS.ti. We analysed the interviews using reflexive thematic analysis. Four themes were constructed, namely (1) entering fertility preservation: motivation and risk, (2) an emotional rollercoaster, (3) needing more information, and (4) a costly source of hope. Participants reflected on choosing between cancer treatment and delaying the cancer treatment to accommodate for fertility preservation, with the importance of biological motherhood reported as a key factor. Both the cancer diagnosis and hormones taken as part of treatment resulted in participants feeling highly emotional. Participants expressed a need for more information on fertility preservation. Finally, even though the process was costly, participants reported that it was a worthwhile endeavour as it instilled in them a sense of hope. Our findings indicate that there is a need to increase awareness of fertility preservation in South Africa. Moreover, considering the pressure that patients are under, their emotional states, and their lack of adequate information, it is important for healthcare professionals to pay careful attention to the needs of patients throughout the process and provide patients with referrals to psychological services when needed. Our findings also indicate gaps in the informed consent process between patients and healthcare professionals that must be addressed by the latter.
Cancer and infertility
Cancer is one of the top causes of mortality worldwide and has become a serious health concern in South Africa (Moodley et al., 2016). Infertility is regarded as one of the most difficult and permanent potential late adverse effects of cancer treatment (Batool Hasanpoor-Azghdy et al., 2014). Women in their reproductive years report that the loss of fertility was potentially more distressing emotionally than the cancer diagnosis itself (Batool Hasanpoor-Azghdy et al., 2014). A meta-analysis of 40 studies found that women experienced negative emotional reactions when their fertility was negatively impacted by cancer treatment and concluded that many patients reported distress, uncertainty about their fertility status and received inadequate information about their fertility (Penrose et al., 2013).
Oncofertility
Oncofertility refers to the nexus between infertility and cancer or oncology therapy (Woodruff, 2007). It entails physicians referring cancer patients who want to conceive in the future to fertility specialists to preserve their biological material for future use (Woodruff, 2007). Fertility preservation is a collection of fertility-sparing methods conducted prior to cancer therapy that allows cancer patients to reproduce following cancer treatment (Ajala et al., 2010; Mahajan, 2015). In male fertility preservation, the man produces sperm that is subsequently frozen and kept for future use (Tschudin & Bitzer, 2009). Female fertility preservation, on the other hand, is much more complicated, with multiple alternatives available, including oocyte cryopreservation (egg freezing), embryo cryopreservation (embryo freezing), and ovarian tissue cryopreservation (ovarian tissue freezing) (Dolmans et al., 2021; Stern et al., 2006). In women, fertility treatment requires hormonal stimulation to produce gametes, which are then retrieved and preserved (Wikander et al., 2021).
These processes make female fertility preservation more physically and mentally taxing than male fertility preservation (Dahhan et al., 2021). In addition, these processes must take place before cancer treatment and therefore can delay the start of cancer treatment. This is made even more controversial by the fact that some hormones involved with fertility preservation may have a detrimental effect on the cancer outcomes (Azim et al., 2008; Rodgers et al., 2017). Nonetheless, patients choose to undertake this procedure knowing the risks involved and that there is no guarantee that undertaking fertility preservation will lead to motherhood.
Psychosocial aspects of oncofertility
There is a dearth of information about the psychological experiences of women who undergo fertility preservation prior to receiving cancer treatment. Researchers performing an ethnographic, qualitative study among 45 women in the United States revealed that fertility preservation was considered a source of hope by women who had completed at least one cycle of oocyte harvesting and freezing prior to cancer treatment (Inhorn et al., 2017). The optimism associated with cancer remission and survival, along with the projected future as a mother of biologically related children, created a dual sense of hope in women (Inhorn et al., 2017). Participants expressed gratitude for the promise that medical technology provided, despite the fact that their future biological motherhood was not assured (Inhorn et al., 2017). However, interviews with women newly diagnosed with cancer who underwent fertility preservation in Amsterdam also revealed the burdensome nature of fertility preservation, as many reported that the process was stressful and that they were fearful of complications resulting from the process (Dahhan et al., 2021). Research conducted among 14 women who undertook fertility preservation prior to cancer treatment in Spain found that these women considered their cancer diagnosis to be an interruption to their life plans (Del Valle et al., 2022). Participants reported receiving information about the fertility preservation process but stated that they were unable to focus on the information shared with them at the time due to stress, and varying support from their partners (Del Valle et al., 2022).
Barriers and facilitators to oncofertility
There are several barriers and facilitators to the uptake of fertility preservation among cancer patients. Research conducted among a multidisciplinary breast cancer team consisting of nurses, surgeons, gynaecologists, a psychologist, and a social worker in Taiwan revealed that poor communication among the multidisciplinary team, insufficient support from patients’ families, and a lack of evidence-based information on oncofertility were some of the barriers to oncofertility (Huang et al., 2022). In keeping with these findings, the results of a systematic review concluded that healthcare workers should obtain current knowledge on fertility preservation and share this knowledge with patients and support networks (Han et al., 2022).
Although the topic of fertility preservation for cancer therapy is in its infancy, no study on this topic has been published in developing countries such as South Africa. Thus, our aim was to describe the salient aspects of fertility preservation prior to cancer treatment among women in South Africa. Exploring these experiences would contribute to a knowledge gap in the international literature on oncofertility. Furthermore, publication of this study may serve to increase awareness of the experience of oncofertility among psychologists and other healthcare professionals (HCPs) in South Africa. An exploratory qualitative approach was appropriate as there was little international and no local research on the topic.
Method
Participants
The study’s participants were recruited from two private reproductive clinics in Johannesburg and Cape Town. Oncofertility is only offered at private reproductive clinics and not government hospitals. This limited the settings where participants could be recruited. The fact that the majority of South Africans cannot afford the costs of private clinics and hospitals means that oncofertility in South Africa is only available to the privileged few who have the resources to engage in oncofertility services privately. This also means that the participants in our study may not represent typical South Africans and may even be more comparable with patients from developed countries. However, they were the only patients receiving fertility preservation prior to cancer treatment and as such were considered for inclusion in this study.
We contacted several fertility clinics, informed them about the study, and asked whether they would be interested in assisting with participant recruitment. The two clinics where we recruited participants agreed to assist with participant recruitment. The researchers were independent from the clinics.
To be eligible to participate in the study, participants had to be between the ages of 18 and 45 years, as this age range is more likely to result in a viable pregnancy and therefore fertility preservation is offered to patients within this range. Patients had to have been diagnosed with cancer and had to have completed treatment for cancer at least 6 months prior to being interviewed. The latter requirement was to allow participants enough time to reflect on their experiences. Participants had to have undergone fertility preservation prior to cancer treatment.
Ten women who had undergone fertility preservation participated in the study. Their ages ranged from 26 to 42 years (with an average age of 32 years). All participants were employed and spoke English or Afrikaans as their first language. Participants were diagnosed with breast cancer (n = 7), ovarian cancer (n = 2), or lymphoma (n = 1). Two participants already had biological children before their diagnosis, and the remaining participants were childless. More than half of the participants were married (n = 6), one was engaged, two were in a serious relationship, and one was single at the time of their fertility preservation. At the time of the interviews, the six married and one single participants’ relationship statuses remained unchanged. However, some participants experienced shifts in their relationship statuses between the time of treatment and the interviews. One participant was in a new (serious) relationship. Two other participants (one was engaged and the other in a relationship when undergoing treatment) were single when interviewed.
Instruments
We used a semi-structured interview guide. The guide contained demographic questions (such as age, marital status, kind of cancer, employment) and questions exploring participants’ experiences, such as ‘Could you tell me about the process of fertility preservation in your own words?’ ‘Could you tell me about your fertility-related concerns?’ ‘Could you tell me about how you decided to opt for fertility preservation?’ and ‘Is there anything you would have wanted to be done differently?’
Procedure
We used two methods of convenience sampling. First, personnel at the reproductive clinics sent invitation emails to patients who met the inclusion criteria. Forty women at both clinics met these criteria. The invitation asked women to contact the researcher or the clinic if they were interested in participating in the study. To ensure privacy when emailing, no recipients were able to see the email addresses of other recipients. In addition, as the researchers were not allowed access to participants prior to their consent, they were not included in the email and did not receive any information about potential participants at this point. Patients interested in learning more about the study or participating either called or emailed the clinic for information. A nurse then supplied them with information about the study and urged them to contact the researchers if they were interested in participating. Researchers did not make contact with the patients; the onus was on the patients to contact the researchers. Patients were also informed that the study was independent of the clinic and that they should not inform the clinic of their participation.
Second, flyers advertising the study were placed on social media applications, such as Facebook, Twitter, and Instagram. These flyers were approved and posted by the Cancer Association of South Africa (CANSA) and Oncology buddies on their social media platforms. Women were asked to contact the researchers for information about the study if they were interested. When researchers were contacted, they provided information about the study and if women wanted to participate they arranged to conduct the interviews.
Interviews took place at a place that was convenient for the participants, such as a private room at their reproductive clinic. Interviews were conducted in English or Afrikaans and were audio recorded with the participants’ permission. The duration of the interviews ranged from 38 to 76 min.
Ethical considerations
The Health Research Ethics Committee (HREC) at Stellenbosch University granted ethical permission for this research (reference number: S19/01/022, project ID 9024). Permission was secured from clinic administrators to publish the flyers on social media channels prior to publicising the research. Clinic staff contributed to recruiting participants by sending emails to patients and advertising the study on social media but were not informed by the researchers of who expressed interest in the study or who was interviewed. The researchers did not have access to patient folders. All participants provided written informed consent prior to being interviewed, and pseudonyms were used in transcriptions and this article. Participants were compensated for their time, any inconvenience, and expenses with a ZAR100 grocery voucher and ZAR50 for transport, where necessary. Participants were informed that the study was independent of the clinic where they received treatment. Only the authors have access to the interview recordings and transcriptions. All data will be destroyed 5 years after the completion of the study. Participants were offered free counselling if they felt distressed after the interviews. None of the participants took up the offer.
Data analysis
Audio recordings were transcribed, checked, and entered into ATLAS.ti windows, version 8 (2022). We used reflexive thematic analysis (Braun & Clarke, 2019) to analyse the data. The process involved (1) data familiarisation and creating familiarisation notes; (2) systematic data coding; (3) generating initial themes from coded and collated data; (4) developing and reviewing these; (5) Refining, naming and defining themes; and (6) writing the report. Both authors were involved in the analysis and discussed the coding and development of the themes as the study progressed.
Trustworthiness
The first author (C.P.) was a student and the second author (R.R.) acted as supervisor. R.R. is an experienced researcher, who provided guidance and feedback throughout the process. Several measures were taken to build trustworthiness in the study. First, interviews were conducted by C.P., who received training on conducting qualitative interviews by R.R. prior to the start of data collection. C.P. and R.R. co-facilitated the first interview as part of the training and preparation for subsequent interviews. An interview guide was used to allow for consistency of the domains explored in interviews. C.P. made use of reflection and summarisation during interviews, to confirm their interpretation of participants’ reflections was accurate. R.R. listened to all the interviews and provided C.P. with ongoing feedback. C.P. and R.R. met regularly to reflect on the interviews. The data analysis process was collaborative. C.P. coded the data, with input from R.R. Extensive notes were made by both researchers, who reflected and discussed the naming of codes and themes.
Findings
We constructed four themes from the data and named them as follows: (1) entering fertility preservation: motivation and risk, (2) an emotional rollercoaster, (3) needing more information, and (4) a costly source of hope.
Entering fertility preservation: motivation and risk
Participants reflected on choosing between cancer treatment and delaying the cancer treatment to accommodate for fertility preservation. Some of the participants stated that they had a sense of urgency to start their cancer treatment to avoid any potential risks of the cancer spreading and quite possibly death. However, all the women in this study undertook fertility preservation regardless of the potential risks involved. For these women, cancer treatment was an important priority. However, future biological motherhood was also an important priority. This theme consists of three sub-themes, namely support from doctors regarding fertility preservation, considering future biological motherhood, and trusting HCPs.
Support from doctors regarding fertility preservation
The urgency that women faced meant that they had little time available to decide on certain practicalities, such as choosing a fertility practice or doctor. According to the participants, the decision to delay cancer treatment to accommodate fertility preservation was not always well received by oncologists. This may be because oncologists were focused on treating cancer and did not have a holistic view of patients’ needs, such as future biological motherhood. For example, Jane, a 32-year-old female, with a history of a miscarriage and no prior children, explained that she thought that her oncologist was more concerned about her health and the cancer spreading, whereas starting a family was more important to her. However, she found the support that she needed from her breast surgeon who identified her need for fertility preservation. She further stated that the surgeon ‘saw me as person needing this [fertility preservation]’ and ‘understood the importance for me to have a child’, even if it meant delaying cancer treatment and risking metastasis. The contention pertaining to delaying cancer treatment to allow for optimal fertility preservation can also be seen in the statement below by Diane, a married participant who was 33 years old at the time of her diagnosis: They [the doctors at the fertility clinic] actually wanted to do another egg retrieval [the first egg retrieval failed] so they wanted to stimulate again and take more eggs out, because they only got 11 the first time . . . I wanted it, because the doctor said I only had 1 ovary, but the oncologist said there was not enough time so she wanted to start the chemotherapy, . . . we could not wait longer to start treatment . . .
Considering future biological motherhood
Biological motherhood was an important goal for all participants, with some stating that they always wanted to be mothers, and others only realising that motherhood was important to them when faced with the possibility that they may not have the option in future. Rochelle, a 30-year-old female, recalled that when she was diagnosed with cancer at age 29, she considered whether she wanted to be a mother in the future. She wanted the option of having her own children, but at that stage in her life, she was not certain. The sentiment is captured in the following interview extract by Rochelle, who at the time of the interview had undergone two rounds of fertility treatment: The funny thing is when all of my stuff happened I did not even know I wanted children, like I knew I wanted the option of having my own children but I was not certain when ja . . . its weird . . . but I think in my subconscious you know I wanted it (motherhood) but the time of my life was wrong but I want that option open and when you hear the (ability) being taken away from you . . . its kinds hits you and like you never think about the luxury of being able to have your own child. I love kids . . . I know now I really want kids.
Although Rochelle experienced some uncertainty about the importance of motherhood, she underwent fertility preservation twice before undergoing cancer treatment. During the interview, she recalled that she realised that she deeply valued motherhood.
Trusting HCPs
The participants also reported that because they did not know anything about fertility preservation, they relinquished control to their HCPs and followed their instructions. For example, Diane described feeling like a robot who was ‘just following orders’ out of desperation, while feeling overwhelmed. In the following interview extract, Diane describes her behaviour: Yes, you do not think or question anything, you are like a robot, someone says you need to go and drink that, you do it and if they say you go and do that you do it . . . you just so desperate to do this (fertility preservation) and survive, you don’t even think, you just do . . . so (shoulder shrug).
Other participants also reported that they underwent fertility preservation without giving it much thought. They reported that they did not have the time or mental capacity to question any of these instructions. Several participants stated that they were not aware of any potential risks involved in undergoing a fertility preservation process. Some reported that they may have missed conversations with the fertility specialists where they may have discussed the potential risks involved because they received this information shortly after their cancer diagnosis, and felt overwhelmed. For example, Nicole stated that she ‘didn’t know of any risks involved in undergoing fertility preservation’ and that her ‘brain was not 100 percent at the time, and I did not hear anything’. Like Nicole, others explained that although they felt overwhelmed at the time of diagnosis, the recommendation of fertility preservation made sense to them.
An emotional roller coaster
Several factors such as the cancer diagnosis, urgency to engage in fertility preservation, and notably, the hormones administered as part of fertility preservation resulted in an emotionally taxing and volatile experience that was referred to by some participants as an emotional roller coaster. Several participants reported that they were already emotional after receiving their cancer diagnosis and that hormone treatment exacerbated their already volatile emotional status. Several participants explained that they were happy to start with the hormone treatment to forget about their cancer; however, the daily injections were a constant reminder of their cancer and impending cancer treatment. For many, such as Caroline, a 29-year-old woman with stage 3 breast cancer, hormone treatment induced feelings of anger and despair around her cancer and possible infertility. Many participants described the entire process as an emotional burden and articulated feelings of sadness, anxiety, confusion, hopelessness, and anger. For example, Samantha, a 31-year-old woman who received her cancer diagnosis while she was on honeymoon, struggled with the injections and recalled that the hormone therapy affected her emotions considerably. She described her emotional status during hormone therapy in the following interview extract: The first morning was just tears (first injection) . . . you know some days were harder than others. I mean my hormones were heightened already . . . so I was very emotional . . . it was for me (participant started crying) . . . the whole process was just very emotional for me (translated from Afrikaans).
A few of the other participants reported similar emotional responses during hormone therapy. Many recalled going on an ‘emotional roller coaster’ where they felt, sad, scared, hopeful, and anxious about the cancer and fertility preservation. For example, in the following interview extract, Jodi, a 30-year-old woman who was diagnosed with lymphoma, described her emotions: I would say it (fertility preservation) was emotional . . . only because the, of the drugs, it takes you on an emotional-roller coaster . . . I would say only because of that . . . like cancer in general is emotional and then you add hormones to all of this, but I would not say that the hormone treatment is negative at all . . . It was a very positive thing for me.
Needing more information
Participants reported that they were worried during the process and had some concerns, such as the possible risks of their cancer metastasizing. Many reported that they felt a need for more information from the health professionals treating them, with some reporting that they sought answers to their questions online.
Rochelle reported that she did not receive enough information about the negative side effects of fertility preservation left by staff at the clinic. She relays her frustration in the following interview extract: It was not okay to be in pain for fu$$king 6 hours and they could not do anything about it. NO . . . have some f$$king sense of empathy and understanding . . . Like they [nursing staff] could have told me this [side effects] before the time . . ., surely like they are the experts they should have known something like this (hypertension) could happen.
Rochelle may have interpreted the lack of support and information as a lack of empathy from the nursing staff at the clinic. This lack of information resulted in Rochelle having to search the Internet for relief from side effects: Google told me that I was experiencing hypertension, but I mean they [the doctors and nurses] could have told me! I was already scared as it is.
Participants indicated that their experiences at the fertility clinics were pleasant but that they did not receive enough information about what to expect during the fertility preservation process. Some participants stated that receiving information and more support from fertility specialists and nurses could have alleviated some of their anxiety and stress. Several women expressed concern that the treatment was too clinical and that they felt ‘pushed through like sausages’ (Jennifer), and that they would have appreciated more empathy and informational and emotional support throughout the oocyte harvesting surgery. Despite expressing a need for more information and support at fertility clinics, the participants reported that they valued the opportunity for fertility preservation and described the overall experience as encouraging and welcoming.
A costly source of hope
The opportunity to undergo fertility preservation provided hope at a time when participants were faced with devastating news. However, this hope was not without significant financial cost. For example, in the following statement, Nicole, a 42-year-old woman who had one child before being diagnosed with cancer, described the benefit and cost of fertility preservation: The worse part was that I could not have another child [because of the cancer treatment] and you know that problem was probably solved . . . that was a big thing that came off my shoulder . . . I just thought that I something to look forward you know, but like I was still a bit scared you know and it is not a cheap process.
Several participants stated that fertility preservation was rife with uncertainty. This uncertainty was related to several concerns, such as the total number of gametes harvested, gamete quality, and gamete survival rates. Many expressed having some doubts about hormone treatment and oocyte harvesting prior to the process and were also doubtful whether fertility preservation would ultimately provide them with what they desired, a biological child.
Achieving biological motherhood was enormously important for several participants who had to make financial sacrifices to undergo fertility preservation. For example, Samantha noted that she and her husband used money that they received as wedding gifts to pay for their fertility preservation treatment. They stated that they had intended to use the gift money as a deposit on their first home. Similarly, Diane and her husband reported spending roughly ZAR250,000 on fertility preservation, which they too were planning on using to purchase a new home.
Some participants who did not have any children prior to developing cancer stated that they always aspired to be mothers. Jodi spoke about the devastating effect of finding out about the financial costs associated with fertility in the following interview extract: I always wanted kids since I was a teenager, I wanted to be a mom so when they told me this (potential infertility from cancer), I left the chemo lab, I went to the fertility lab, they told me how much it was going to cost and I went downstairs started and I just cried . . . I cried because . . . I don’t have the money to do this treatment and you know it’s like this is my dream.
Jodi secured a loan from her previous employer to pay for her fertility preservation. Participants recalled thinking about the costs of fertility preservation and the possibility of infertility. They weighed the risks of infertility after cancer treatment and the cost of fertility preservation, with the knowledge that there were no guarantees of success. For example, in the following interview extract, Jodi weighs the risk of not being able to have a biological child and the cost of infertility treatment: I knew my fertility was at risk, (be)cause my doctor told me from the start, so my thoughts were, am I willing to take the risk of not having kids or am I going to try and make a plan for the money.
All the participants in this study opted for fertility preservation, despite the risks and cost, indicating that future biological motherhood was important to them, even in the face of cancer.
Discussion
In this article, we describe the experiences of a group of women who underwent fertility preservation in Cape Town and Johannesburg, prior to cancer treatment. It is important to mention the privileged position that participants were in, as fertility preservation is not available in the public health sector. We acknowledge that the settings in which this study took place are similar to those of previous studies and therefore there are similarities in the findings. Nonetheless, their experiences are pertinent and give insight into the experience of oncofertility treatment in South Africa, which had not been explored in previous research.
We described four important aspects relating to the research participants’ experiences. The first was the participants’ experience of making the decision to engage in fertility preservation, their acknowledgement of the risks involved, and their motivation to engage in the process despite these risks. Participants in this study stated that they were aware of the risks of delaying cancer treatment to allow for fertility preservation to take place but chose to undergo fertility preservation nevertheless. They reported that they chose to pursue fertility preservation out of a strong desire for biological motherhood. This desire for biological motherhood was also described by young women diagnosed with cancer in the United States (Hershberger et al., 2016). Biological motherhood may be an important aspect of many women’s identity, and women with infertility may actively seek treatment in the pursuit of achieving this aspect of their identity (Loftus & Namaste, 2011). However, oncofertility treatment is not widely accessible and there are several barriers associated with access. Peddie et al. (2012) interviewed patients diagnosed with cancer and reported that the urgency with which oncofertility was presented to patients acted as a barrier towards uptake and that few women were given the opportunity to discuss their fertility preservation options. All the participants in our study took up the offer of fertility preservation, as this was part of our inclusion criteria. However, other studies show that patients do not always opt for fertility preservation due to the associated costs, concerns about delaying cancer treatment, non-referral from medical professionals, and their relationship status (Del Valle et al., 2022; Hershberger et al., 2016; Jones et al., 2017; Panagiotopoulou et al., 2018).
Second, participants described their experiences of fertility preservation as an emotional roller coaster, with several stating that they felt emotionally volatile during the process. Many attributed these emotions to the hormones that they were taking as part of their treatment. However, the impact of being diagnosed with cancer, which has the potential to be life-threatening, may have also contributed to them feeling emotional and distressed. Patients experiencing fertility treatment outside the context of a cancer diagnosis report psychological distress (Hajela et al., 2016; Lin et al., 2016; Patel et al., 2016). It may be that patients seeking fertility preservation prior to a cancer diagnosis endure a double burden, related to both cancer and fertility treatment. Participants in several oncofertility studies report feeling distressed (Bentsen et al., 2021; Dahhan et al., 2021; Hershberger et al., 2016). Psychologists could play an important role in providing patients who seek fertility preservation with emotional support during this difficult time.
Research with similar patient groups also reported a need for support. For example, researchers who interviewed 12 female cancer survivors who underwent fertility treatment in Copenhagen found that patients needed support (Bentsen et al., 2021). Oncofertility preservation patients in several studies reported unmet support needs (Logan et al., 2018). Considering the reported distress and expressed need for support, it is necessary for patients to be offered psychological support. This was echoed as a recommendation following a systematic review of articles dealing with the psychological aspects of fertility preservation (Tschudin & Bitzer, 2009).
Third, participants in this study expressed a need for more information about fertility preservation. Many sought out information by themselves. This is not a new finding. For example, a phenomenological study conducted among 14 female patients in Spain found that fertility preservation was a challenging experience, with these patients reporting that they needed more information (Del Valle et al., 2022). Fertility preservation patients in other studies expressed a need to receive written information (Gorman et al., 2011; Hill et al., 2012). Women in our study reported that treatment from healthcare providers was too clinical and some reported a lack of empathy from HCPs. This lack of empathy was also reported in other studies (Del Valle et al., 2022).
Finally, participants spoke about the hope that fertility preservation offered them and the cost associated with this hope. Access to fertility preservation gave participants hope of motherhood beyond cancer. Oncofertility patients in other studies have also expressed this hope (Assi et al., 2018; Huang et al., 2022; Inhorn et al., 2017; Parton et al., 2019; Quinn et al., 2010). However, this hope comes at a substantial financial cost, as reported elsewhere (Banerjee & Tsiapali, 2016). Participants in this study reported that they used money that they were saving or took out loans to pay for treatment. This is a further indication of the importance of biological motherhood among the sample.
The findings in this study also highlight indications of the manner in which informed consent for fertility preservation processes may be compromised: the emotional state of women, pressure from doctors, and the lack of adequate information. Participants indicated that they relinquished control to doctors and did not give much thought to the fertility preservation treatment process. While this may have been related to the stress of being diagnosed with cancer, it demonstrates that proper informed consent was lacking. HCPs should pay careful attention when informing patients about treatment and encourage active engagement in the informed consent process. In addition, participants stressed a need for more information, particularly about the side effects of treatment. This supports our assertion of a gap in the informed consent procedure required for treatment. This gap is one that needs to be urgently addressed.
This study does not present novel findings, as the findings are similar to research conducted internationally. This may be because the research settings were comparable, resulting in similarities in patient experience. The findings are important because they indicate that patients who underwent fertility preservation prior to cancer treatment in South Africa have similar experiences to those receiving the treatment in other parts of the world. However, it is a privileged few who have access to this treatment, while the majority of South Africans cannot even consider fertility preservation. This may be an indicator of the growing divide between patients receiving public and private health care in South Africa.
Our discussion is limited by the paucity of research on the experiences of women who underwent fertility preservation prior to cancer treatment. Psychosocial research in oncofertility in South Africa is much needed. We recommend that future research explores the barriers and facilitators to treatment within the local context and the experiences of non-female and adolescent and young patients. In addition, quantitative studies evaluating distress, coping, and quality of life during and after treatment may be of substantial value to the field. Finally, the feasibility of including oncofertility procedures in public hospitals should be explored.
We hope that this article adds to the knowledge corpus on this subject by including the experiences of women in South Africa. To our knowledge, it is the first study to explore patient experiences of fertility preservation in the context of cancer in Africa. There is a need to increase awareness and accessibility to fertility preservation in South Africa (Ataman et al., 2022). Moreover, considering the pressure that patients experience, their emotional state, and the lack of adequate information, it is important for HCPs to pay careful attention to the needs of patients throughout the process and provide patients with referrals to psychological support when needed.
In conclusion, the experiences of fertility preservation prior to cancer treatment among women in South Africa are similar to that of women in other studies. Participants were aware of the risks associated with oncofertility but were driven by the need for future biological motherhood to preserve their fertility, which indicated that fertility preservation was costly but provided them with a sense of hope.
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.
