Adolescent Males' Understanding of Infertility as a Long-Term Effect of Cancer Therapy

Abstract

Cancer therapy can result in infertility in childhood cancer survivors; however, little is known about how young adolescent males make sense of infertility and potential future parenthood. What's more, research shows that many healthcare professionals in Canada do not discuss fertility preservation (FP) with this vulnerable population. This study examines how male adolescent childhood cancer survivors understand infertility as a long-term effect of cancer treatments. We used a narrative analysis to examine 16 interviews with 14–18-year-old males. The findings from this research illustrate that FP discussions may raise meaningful questions for young men about how they see themselves and construct their identities. The findings also demonstrate that young men's beliefs about FP may be informed by family narratives, and it shows that biological parenthood may be important to adolescent males.

Introduction

In recent years, fertility preservation (FP) options for reproductive-age cancer patients have become more readily available in Canada.^1,2 Current research suggests that being offered the choice to preserve reproductive material before undergoing cancer treatment in order to maximize chances of future fertility is important to cancer survivors' psychosocial wellbeing and quality of life.^2–7 The American Society of Clinical Oncology (ASCO), the Canadian Fertility and Andrology Society (CFAS), and the American Society of Reproductive Medicine (ASRM) recommend that FP options be discussed with reproductive-age cancer patients before beginning treatment.^8–12 The ASCO guidelines consider these discussions a critical part of education and informed consent before beginning cancer therapy.^10,12 Even though guidelines for healthcare professionals (HCPs) recommend that infertility risk and FP options be discussed with reproductive-age cancer patients, in clinical practice FP discussions are often not initiated with adolescents and young adults (15–29 years old).^1,9,12–18 Additionally, even when conversations are initiated, survivors of childhood and adolescent cancers have reported being dissatisfied with how infertility risk and FP options are addressed by HCPs.^5,19–22

Research on the barriers to FP discussions has focused primarily on the perspectives and experiences of oncology HCPs,^21,23–25 adult and adolescent female cancer patients and survivors,^25–30 and adult male survivors of childhood and adolescent cancers.^{3,4,23,31–33} In these studies, considerations of biological parenthood and FP have been found to influence a cancer survivor's psychosocial wellbeing and quality of life. Individuals who learn that they may be infertile as a result of cancer treatment have described substantial grief and distress, as well as feelings of loss, depression, and anxiety.^1,34,35 While biological parenthood and FP are important to many cancer survivors,^36,37 studies have also indicated that even if patients do not preserve their fertility, having the chance to participate in decisions about FP can result in reduced anxiety and depression for patients.^1,2 Some adult male survivors of childhood cancer report feeling angry or resentful about not being aware of or having been denied access to FP options and frustrated at not having been better informed about this possibility in the past.²⁰ These findings suggest that it is important for cancer survivors to have the choice and option of FP, and it provides support for offering FP options to patients and their guardians when appropriate. A number of studies using survey methods have found that male adolescents with cancer would like the opportunity to pursue FP.^7,38,39 In our study, we sought to add to this literature by using qualitative study methods to explore how male adolescents understand potential infertility and parenthood and the reasons why they might wish to pursue FP.

Methods

Study participants

We conducted a secondary analysis of 16 interviews with 14–18-year-old males who were treated for cancer as children and who made at least one visit to a cancer center each year for a check-up. Participants were recruited from three major pediatric cancer centers in Canada and efforts were made to include participants who had different types of childhood cancers. Eligible participants were 14–25-year-old males who were diagnosed with cancer at 12 years of age or younger and who had completed at least 2 months of chemotherapy. Participants either still received active therapy or completed therapy. Male adolescents were excluded if they did not speak English or if they had a bone marrow transplant (because they underwent chemotherapy exposure before the FP discussion). See Table 1 for participant demographics.

Table 1.

Demographics of Participants at the Time of the Interviews

General background of participants
Age range of participants (at the time of interview)	14–18
Median age of participants (at the time of interview)	16
Proportion of participants in high school	14/16
Number of participants from Ontario; number from British Columbia	10:6
Number of participants who identified as “Caucasian”; number who identified as “Other”	13:3

Participants' cancer experiences and knowledge of FP
Participants' cancer types	Leukemia, lymphoma, and sarcoma
Age at diagnosis	11 months–15 years
Time of interviews since the time of diagnosis	3–15 years
Number of participants who experienced relapses	3
Number of participants who knew someone who had gone through fertility treatment	0

Demographics about interview context
Proportion of interviews that took place over phone or through Skype	15/19 (includes the four interviews that took place with one participant)

FP, fertility preservation.

Data collection and analysis

The interviews were initially collected in 2012 as part of a larger research project that sought to measure and compare parents', survivors', and providers' willingness to accept the risk of testicular biopsy for the purpose of FP in prepubescent boys with cancer.⁴⁰ In our study, we used Arthur Frank's narrative typology of illness as a framework to re-examine the 16 survivor interviews with the goal of better understanding how adolescent males who had childhood cancer make sense of infertility and potential parenthood.^41,42 In Frank's narrative typology, the “restitution narrative” focuses on a person's return to “normal” and to a past state of health with the assistance of healthcare providers and medical treatments; the “quest narrative” describes a new transformed version of a person's sense of self following an experience with illness; and the “chaos narrative” emphasizes moments of weaknesses, frailty, and loss of self in the illness experience.^41,42 Using a narrative methodology allowed us to consider each adolescent's experience of illness and perceptions of infertility, including how these first-person narratives may be informed by and situated within larger social and cultural narratives.^43,44 We report in detail how Frank's narrative types emerged in the illness narratives of study participants in a forthcoming article. In the current article, we describe additional findings related to study participants' perspectives on infertility, parenthood, and FP.

After obtaining institutional ethics approval, the data were analyzed using an approach outlined by Caddick et al. and Smith.^45,46 The study's first author (S.I.G.R.) (1) immersed herself in the data by closely reading the interview transcripts and field notes; (2) recorded initial themes that surfaced from the data; and (3) re-listened and reread the interview transcripts again with an eye to identify whether Frank's three narrative typologies aligned with participant responses. During the analysis, (4) the interdisciplinary research team, which included experts in child oncology, bioethics, gender studies with boys, narrative analysis, and qualitative inquiry, held analysis meetings to discuss the main themes and impressions, develop explanations, and deliberate alternative explanations and interpretations to guide further analysis. Analysis was considered complete when conclusions were logically consistent, incongruences were accounted for, and alternate interpretations had been explored and accommodated or rejected based on sound, explicit reasoning.

Interpretive analysis of interviews

The analysis revealed three main findings or themes that are described below.

Conversations about infertility may raise questions for male adolescents about how they understand and see themselves as cancer survivors

Overall, the participants' accounts illustrate a diversity of experiences and views that adolescent males have about FP and show that conversations about infertility and potential parenthood may raise important questions for young men about how they understand and see themselves. Most of the participants (11/16) expressed a profound desire to be “normal,” which they characterized as having the same life opportunities as cancer-free individuals. Given their past experiences missing out on activities because of cancer, the participants stressed the importance of having similar “chances” in the future to individuals who did not have cancer. For instance, one participant expressed that the main “goal” of the FP technology is to give cancer survivors the opportunity to have “more normal lives.” For the participants, “normal” was intricately connected to choice. They described that having the opportunity to choose whether one wants to have biologically-related children allowed them to pass as “normal” so that they could act as cancer-free individuals. Common to these participants was a shared trust in and focus on something outside of themselves to facilitate their journey from an “abnormal” state of illness to a “normal” state of health in which individuals have the same life choices as “normal” cancer-free individuals. In each of these interviews, the primary vehicle for their return to “normal” health and life choices was the FP technology, their doctors, and, in one case, God.

In a subset of interviews (dominant in three and present in two), participants viewed the illness experience as something transformative and valuable to their lives rather than categorizing themselves or their experiences within a “normal” “abnormal” binary. They suggested that their illness played a valuable role in their positive mindsets and attitudes and helped them develop a greater appreciation for their family and friends. For instance, in commenting on the challenging parts of his cancer experience, one participant explained, “There are a lot of good memories and there are a lot of bad memories there, but they are for me to deal with and they are a part of me and they are special to me.” His description of his cancer memories underlined the constructive role that cancer played in his life, particularly in helping him recognize values that were important to him.

Finally, there was one interview in which the participant responded by making reference to traumatic memories from his cancer experience. Though the participant explained that he sees benefits in the FP procedure, he reiterated a fear that “something bad might happen” in using FP technology. His comments suggest that the conversation about FP technology may have uncovered some of the upsetting memories from his cancer experience.

Young men's perceptions of parenthood may be informed by larger family relationships

A common theme across participants was the importance of family relationships in their experience of illness and perceptions of parenthood. The participants' past memories and current experiences with their families played an important part in whether they envisioned themselves with a family in the future through FP. For example, when considering whether he would hypothetically want to pursue FP, one participant reflected on past memories with his family and the time he had spent with his cousins, brother, parents, and grandfather at his cabin. Upon reflecting on his fond memories with his family, he concluded: “The forgiveness, the unending love of a family I think is something very special and I think everyone should get to experience all of that.” His decision about whether to hypothetically preserve his fertility was influenced by his family members' behaviors and beliefs, and to the “unending love,” commitment, and compassion that he viewed to be unique to family relationships. Deep love and gratitude for their families was also reflected in some participants' concerns about how FP might affect their families. For instance, one participant brought up the financial stress that his cancer diagnosis had on his family to describe his uncertainties and apprehensions about theoretically pursuing FP, explaining that he would not want the cost of FP to be a “burden” on his family.

Biological parenthood may be important to young men

All 16 of the participants envisioned themselves having a family of their own in the future and 15 stressed that they would prefer to have biologically-related children. Participants presented biological parenthood as a part of a “normal” life, and they described how they “always wanted” to be biological parents. Biological parenthood emerged as the socially preferred and “better” option and was associated with a sense of belonging and adherence to family-building customs and norms. For instance, one participant expressed worry and distress that he would feel “left out” of his family if he did not have biological children. Some of the participants also voiced concerns about disappointing their future partners if they could not follow the typical life trajectory and have biological children. There was one participant who did not express a preference for biological parenthood over other family-building options. This young man resisted the notion that biological parenthood is typical and that individuals are necessarily closer to their children when they are biologically related to them. Although deviating from dominant assumptions about “normal” parenthood, this participant was still aware of the social expectation to have children. He sounded apologetic for his theoretical desire to opt out of the FP technology and noted that it “sounds a bit bad, but I don't think kids are, just the chance of having kids later on in life is worth putting all the extra money on my parents and my family.”

Discussion

This study demonstrates the complex relationship between illness and self-identity and shows that discussions about potential infertility and FP options may prompt adolescents to think about how they conceive of themselves in relation to their cancer identities and/or their future selves as parents. Though all of the participants made reference to their illness and its impact on their self-perceptions, they expressed their experience and constructed their identities in different ways. While some participants focused on a desire for a “normal” idealized self, others highlighted an empowered and transformed self through illness, or emphasized a loss of connection with and/or a feeling of ambivalence about a sense of self.

Interestingly, even though the participants were considered free of cancer, their cancer experiences continued to be a profound part of their identities and how they saw themselves. It may be that their experiences having childhood cancer already had a critical impact on the participants' identities, or it may be that the question of infertility as a long-term effect of cancer reminded and/or brought participants back to their identities as cancer patients. Irrespective of the cause, our study findings illustrate that conversations about infertility may prompt and/or encourage adolescents to think about how they see themselves in relation to their cancer experiences. While more research is needed about how to have these conversations in clinical practice, Frank's narratives could prove to be useful for HCPs in a clinical environment when speaking with adolescent patients and survivors about FP options and potential parenthood. In another article, we described how Frank's narratives could be a helpful listening tool for clinical providers when discussing FP with male adolescents.⁴⁷

Another key finding from this study was that throughout the participants' narratives, they did not think of themselves as isolated. Indeed, their comments suggest that their experiences with cancer and beliefs about FP were informed by larger family narratives. Not only do family members tend to be actively involved in the FP decision for children with cancer, but family perspectives and expectations of FP and potential parenthood, whether real or perceived, may also inform adolescents' conceptions of FP and their views of themselves with a family in the future. The participants' comments demonstrate that cancer and its related side effects not only influence the young person who is diagnosed; they can also impact that individual's family and wider community in profound and complicated ways.

Finally, the participants' responses shed light on the importance that biological parenthood may have to adolescent males. In keeping with existing research with the general population, underpinning all but one of participant's responses was the social value accorded to biological parenthood over other forms of family building.^48–50 That is, all but one of the male adolescents expressed the dominant belief that biological parenthood is the “normal” and preferred option. The participants' perceptions reproduced and sustained ingrained social values that assign preferential status to biological parenthood. The majority of the young men's comments suggest that they desired the FP technology option because it could provide them with an opportunity to fit in with the general community and to achieve what they perceived to be a reconstituted form of a “normal” life.

Alternatively, the one outlier interview illustrates that some young men may resist the notion of “normal” with respect to biological parenthood. This participant was the only person in the interviews to challenge the notion that biological parenthood is more desirable than other ways of creating a family. His response, demonstrates that there are different ways of thinking about family and community connection. Nevertheless, his comment that not choosing biological parenthood “sounds a bit bad” signals his understanding that his views on biological parenthood diverged from the social norm.

Conclusion

We sought to examine how male adolescents who had childhood cancer understand infertility as a long-term effect of cancer treatments. Our study demonstrates that conversations about infertility and FP options can raise complex questions for male adolescents about how they see themselves in relation to their cancer experience and as potential parents. The findings from this study fill an important gap in the literature concerning adolescent male perspectives on infertility and future parenthood. They may be particularly relevant to research examining the experiences of children and adolescents who had cancer, as well as support groups, awareness programs, healthcare institutions, and HCPs who work with adolescent cancer survivors and patients.

Footnotes

Acknowledgments

We are grateful to all of the individuals who participated in this study, as well as to Dr Sheila Pritchard and Dr Carol Portwine for their roles in participant recruitment. The 2014 study from the Hospital for Sick Children, which provided the original data for the master's research project, was supported by the C17 Council and the Kids with Cancer Society, the Childhood Cancer Canada Foundation, and the Coast to Coast Against Cancer Foundation. S.I.G.R. was supported by a Canadian Institutes of Health Research Canadian Graduate Scholarships Masters Award.

Author Disclosure Statement

No competing financial interests exist.

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