Abstract
Introduction
While medical advances are enabling more youth with cancer to live into adulthood, 60% of them suffer from late effects of treatment, with 25% to 60% (Ussher & Perz, 2019) experiencing infertility. Typically, most emerging young adults (EYA) spend this developmental period (18–29 years of age) actively constructing their identities with regard to “love, work, and worldviews” (Arnett, 2015) by attaining education and financial independence, establishing personal relationships, and constructing unique world views. This transitional stage between adolescence and adulthood is described in industrialized societies due to the complexity of the ever-changing social and economic climate resulting in delays of expected adult roles such as permanent partnership, parenthood, and career commitment (Arnett, 2015; Wood et al., 2018). Having more autonomy and opportunity for choice, emerging adults explore romantic relationships, occupational options, religious/political beliefs, and gender roles (Schwartz et al., 2013). Building identity becomes the forefront of an individual's life during this time as it relates to all facets of life (professional and relationships partnerships) creating a unique social identity (Arnett, 2015; Padilla-Walker & Nelson, 2017; Sumner et al., 2015).
EYA cancer survivors affected by infertility, may experience developmental tasks differently and, on the other hand, spend this time reevaluating their views on intimate relationships, independence, parental roles, and family composition as a part of reconstructing their identity (Arnett, 2015; Padilla-Walker & Nelson, 2017). In order to achieve various developmental milestones for this population, support surrounding resiliency and survivorship is required (Facchin et al., 2019; Patterson et al., 2012; Warner et al., 2016).
Despite growing numbers of cancer survivors, literature is limited on the topic of identity formation and coping with infertility among EYA survivors. The purpose of this study was to understand the experiences of EYA cancer survivors who are faced with infertility as a late effect of cancer treatment while reaching developmental goals and reconstructing identity.
Background
The term “childhood cancer survivor” refers to “those diagnosed at 18 years of age or younger who have been in remission for longer than five years” (Forsbach & Thompson, 2003, p. 117). About one in every 640 young adults is a childhood cancer survivor (Odo & Potter, 2009; Warner et al., 2016), with approximately 60% experiencing at least one late effect of treatment related to physical, cognitive, or psychosocial difficulties (Bell, 2019; Facchin et al., 2019; McClellan et al., 2013; Ussher & Perz, 2019). The physical and psychological complications that arise during survivorship have the potential to inhibit, delay, and complicate both personal and professional goals for EYA survivors, such as the attainment of higher education, the ability to live independently, and the experiences of marriage and parenthood (Bell, 2019; McClellan et al., 2013; Warner et al., 2016; Ussher & Perz, 2019).
Emerging adults must integrate survivorship experience and late effects of treatment into their identity formation processes and take these challenges into account as they continue to form their identities determining how late effects, such as infertility, impact their sense of self (Arnett, 2015; Bell, 2019; Erikson, 1968; Ussher & Perz, 2018). While treatment-induced infertility affects males and females in regard to being a mother or father, young women especially consider their infertility a part of their central identity (Bell, 2019; Facchin et al., 2019). It remains a sensitive and personal topic to address as there is a lack of understanding of its impact on psychological health and identity formation in EYA survivors (Sanders et al., 2015; Ussher & Perz, 2019).
Emerging Adulthood in Theoretical View of Identity
The experience of infertility among EYA survivors and its potential impact on developmental tasks, including identity formation, is critical for this age group (Arnett, 2015; Erikson, 1950; Sumner et al., 2015). According to the Eriksonian perspective (Erikson, 1950, 1968), processes of identity formation proceed from adolescence through the lifespan and yield a sense of continuity into a congruent whole, addressing the question “Who am I?” These processes are undertaken in the context of significant relationships that include family, peers, and culture and include integration of the inner self, consolidation of personal experiences, gender identity, and social expectations. (Erikson, 1950, 1968; Sumner et al., 2015). Currently, the identity process has extended into the emerging adulthood period as young people try to find answers to issues related to love, work, and worldviews (Arnett, 2015; Padilla-Walker & Nelson, 2017). Additionally, EYAs are utilizing this time for identity exploration within areas of education, profession, and relationship, consequently leading to the establishment of independence and a separate identity from their original family (Arnett, 2015; Iannarino et al., 2016; Wood et al., 2018).
Thus, construction of identity is a complex process, in which individuals must merge cognitive, emotional, and social factors to construct one's sense of self, coherent with gender, personal values, lived experiences, and social expectations (Arnett, 2015; Erikson, 1968; Wood et al., 2018). In this process, EYAs are under additional pressure to adjust their life goals based on the effects of cancer treatments. However, it is unclear what resources are necessary to address these unique developmental stressors in light of infertility, as there is limited literature on this topic (Ussher & Perz, 2019; Warner et al., 2016).
Infertility
Infertility impacts the lives of numerous childhood cancer survivors and can be defined as the inability to conceive a child naturally (Facchin et al., 2019). It affects both male and female survivors at a high rate of 25% to 60% (Sanders et al., 2015; Ussher & Perz, 2019) and has been referred to as “double trauma” that contributes to lower quality of life and presents infertility-related distress linked to other psychological conditions, such as anxiety, depression, and low self-esteem, especially among females (Bell, 2019; Facchin et al., 2019).
Women experiencing infertility are challenged to “negotiate their identities within a pro-natalist culture” (Dryden et al., 2014, p. 1342; Sanders et al., 2015). The expectation of motherhood often results in feelings of inadequacy while harboring negative views on their genetics and their reliance on modern medicine for survival. More specifically, young women often view themselves as “half a woman” or “flawed” (Bell, 2019; Dryden et al., 2014; Facchin et al., 2019; Ussher & Perz, 2019). These beliefs are tied to feelings of shame, failure, and self-judgment due to the societal view that becoming a mother is a central component of female identity. Studies indicate that young women feel guarded when it comes to sharing information about their infertility and report limited physical spontaneity and perceived sexual fulfillment while restricting the development of close friendships or intimate partnerships (Bell, 2019; Facchin et al., 2019; Sanders et al., 2015).
Although the precise number of young adult cancer survivors experiencing infertility is unknown, it has been reported that worries concerning the ability to have children impacts at least 53% of men and 65% of women cancer survivors (Ussher & Perz, 2018; van den Berg & Langeveld, 2008). Despite that much literature on fertility in survivorship is related to female reproduction, it is of equal importance for males as 15% to 40% are impacted (Klosky et al., 2014; Ussher & Perz, 2018, 2019). In fact, men report feeling “not a whole man anymore” and not living “up to the role of a husband” when they are faced with infertility (Bell, 2019; Facchin et al., 2019; Ussher & Perz, 2019). More than 50% of male survivors hope to have children, and a majority of them are open to alternative options such as adoption or donor insemination (Ussher & Perz, 2019; Warner et al., 2016). It is also important to note that infertility affects both the infertile spouse as well as the fertile individual, forcing couples to reconstruct their views on how to become parents as their desired plan has come to a halt (Chaves et al., 2019; Raque-Bogdan & Hoffman, 2015).
The Psychosocial Impact: Infertility and Identity
Concerns regarding reproductive health become increasingly salient in emerging adulthood when survivors begin to contemplate the possibility of building a family while investigating fertility options. This decision to pursue parenthood is a highly personal and individualized experience and can become disruptive in the lives of EYA cancer survivors (Bell, 2019; Stinson et al., 2015). In fact, this long-term effect often endangers an individual's sense of control, emotional well-being, and adjustment while adding feelings of alienation and mistrust to their bodies (Bell, 2019; Facchin et al., 2019; Odo & Potter, 2009). Many survivors bear self-blame, carrying the weight of infertility as their personal responsibility (Bell, 2019; Raque-Bogdan & Hoffman, 2015). While fertility is central to gender identity for women, as biological motherhood is a core signifier of adult femininity; for men, it is a threat to masculinity and denotes impotence and inferiority (Bell, 2019; Klosky et al., 2014; Raque-Bogdan & Hoffman, 2015; Ussher & Perz, 2018).
The crisis of “identity versus role confusion” looks different for many childhood cancer survivors who grapple with the knowledge that they may not be able to obtain the role of mother, father, or even spouse as a result of their infertility. While EYA survivors have already experienced altered social identities and relationships following diagnosis, the realization of infertility adds many challenges to role confusion (Bell, 2019; Iannarino et al., 2016; Stinson et al., 2015). Many women deny the fact that they are infertile to maintain their own sense of gender (Bell, 2019), but both men and women report that cancer-related infertility affects their feelings about themselves as a man or a woman (Green et al., 2003; Ussher & Perz, 2018, 2019).
While literature shows that females, in particular, are at risk of experiencing rejection based on their inability to achieve pregnancy due to the societal expectation (Bell, 2019; Sanders et al., 2015; Ussher & Perz, 2019), infertility-related distress is described by both men and women who express feelings of inadequacy. Women describe themselves as “worthless” in their womanhood, men feel they are not meeting their role as husbands, indicating the negative consequences associated with infertility such as depression, grief, and low self-esteem (Bell, 2019; Facchin et al., 2019; Ussher & Perz, 2019). Thus, EYA survivors with infertility may be at risk for negative outcomes of role confusion based on the inability to fulfill their desires for parenthood.
EYA cancer survivors are often unprepared to discover that their fertility has been compromised due to the limited knowledge and control that they were able to exercise over their own treatment decisions (Green et al., 2003; Iannarino et al., 2016). As per United States Law, parents or legal guardians are the only individuals who are allowed to make healthcare decisions on behalf of their children under the age of 18; thus, studies report that 59% of participants were unaware of their fertility status as survivors of childhood cancer (Marchak et al., 2018; Odo & Potter, 2009; Zakak, 2009). Both males and females describe issues with a lack of knowledge and limited control during the procedures, in addition to experiencing anger or grief concerning the fact that they were not informed about the risk of infertility after treatments (Ussher & Perz, 2018). The majority of the measures taken to preserve fertility are based on sexual maturity, which means that prepubescent children are unable to reap the benefits associated with the procedures (Green et al., 2003; Zakak, 2009), those measures could instill hope and enthusiasm for the future to those who reached a maturity level and cope with cancer.
Purpose of the Study
While most EYAs spend this developmental period actively constructing their identities by attaining education, establishing important relationships, independence, and constructing unique world views (Arnett, 2015; Wood et al., 2018), EYA cancer survivors affected by infertility may be faced with very specific challenges. Thus, the current study investigated EYA experiences in dealing with developmental tasks of emerging adulthood related to restructuring feminine/masculine identity in light of infertility, its effect on forming romantic relationships, and building a career and independence.
Before describing the method and findings of the study, the research team presents their own profiles and positionality to highlight their perspectives and biases. The research team was composed of three faculty members and two master’s students. All identified themselves as females. All three faculty members had a PhD, with two faculty members identifying as White and one as a person of color. While faculty members viewed themselves as experts in research who have conducted research on various such topics within the field of human development, child life practice, and social work, the lead researcher holds an advanced degree in medicine and human development. Both graduate students identify themselves as White. During the time of the research, both students were training to be child life specialists and one student had a great interest in working with oncology patients, especially teens. Thus, this eclectic team of researchers made it possible to study such an important and sensitive topic of research.
Methodology
Research Design
A qualitative descriptive approach in which “the approach is naturalistic, interpretive” (Rossman & Rallis, 1998, p. 7) was used to collect data and describe an individual's experience in their own words in a low-inference manner (Kim et al., 2017). The theoretical lens focused on identity development with other developmental tasks for EYAs (Arnett, 2015; Erikson, 1950, 1968) guided this study and the interview guide.
Recruitment and Eligibility
Using purposive sampling, participants were recruited via a charitable organization that provided college scholarships to survivors of childhood cancer. It is important to note that none of the researchers knew of this organization or were related to members of this organization in anyways. After gaining approval from the gatekeeper of the organization, a recruitment email was sent to the organization's database of past and present scholarship recipients. Participation was voluntary and prospective participants were asked to contact the researcher directly via email in order to confirm their eligibility. Each volunteer was screened based on the following criteria:
Participant must be an emerging adult between the ages of 18 and 29. Participant must be a survivor of pediatric cancer. Participant must be impacted by infertility in survivorship. Participant must be able to participate in an interview, in English, either over the telephone or using a video conferencing platform called Skype.
Data Collection
After obtaining Institutional Review Board approval, data collection began as soon as each eligible participant provided a signed copy of informed consent via email and completed a demographic questionnaire. Five participants chose to complete the interview over the phone, while one chose to complete the interview via Skype. A graduate child life student with an interest in working with oncology patients conducted the interviews after setting a mutually approved time for comfortable conversation (for both parties). Before the interview, the student introduced herself by explaining her professional reason for conducting the study, including plans for disseminating research findings. Given the sensitive nature of the topic, the interviewer made sure that the participants’ location was safe/appropriate for open communication. This was a part of the rapport-building process with the participants.
Interview Process
Semistructured interview questions were designed to elicit specific information related to developmental challenges of emerging adulthood (Arnett, 2015; Erikson, 1968) and infertility while permitting the exploration of a general topic to assist in uncovering the participant's perspectives while also allowing the discussion of details important to them (Rossman & Rallis, 1998). The open-ended questions were about romantic relationships, infertility, and whether it threatened/altered participant identity, communication style, career, and future parenting/family composition (e.g., “What was it like to discover that your cancer treatment had negatively impacted your fertility?” “How has infertility in emerging adulthood impacted your relationships?”). The interviews ranged in length from 40 min to 1 hr. Each participant gave verbal consent to be audio recorded at the beginning of their interview. Identifying information was stored securely, while recorded data was saved on the researcher's login-protected computer.
Data Analysis
Due to the inherent nature of qualitative research, data analysis occurred in conjunction with data collection throughout the study (Creswell, 1994). The processes of forming and renegotiating personal identity required attentive listening and sensitive analysis in order to obtain “broad insights and rich information” from participants (Kim et al., 2017). All interviews were transcribed and coded line-by-line (Vaismoradi et al., 2013). Each participant was assigned a letter corresponding to field notes/remarks/observations and underlying supportive signs discovered in participants’ responses. Keywords and similar responses were highlighted, while units of relevant information were grouped into meaningful clusters to determine relevant themes (Rossman & Rallis, 1998).
A second rater was provided with a general description of the study and a copy of each transcribed interview in order to increase reliability. While both researchers arrived at a coding structure that was faithful to the meanings that emerged from the data, with a substantial amount of overlap between the findings of the two raters, no significant changes were made to the existing codebook. Saturation was reached, as evidenced by the repetition that was assessed by two independent raters. The themes that emerged from the data set were consolidated and identified. Extracted themes were organized based on a theoretical framework (Arnett, 2015; Erikson, 1950), resulting in four rich and distinct themes: uncertainty and restricted exploration, challenges to intimacy and communication, restructuring identity through redefining roles, and coping through familial support.
Results
Participants
The sample consisted of six (N = 6) cancer survivors, where five participants (n = 5) were female, and one (n = 1) was male. All participants fell into the developmental period of EYA ranging from 18 to 29 years of age, with a mean age of 23.2 years representing the sample of emerging adults who are diverse with regard to life experience, education, and employment status, as presented in Table 1.
Description of Participants
All study participants (N = 6) lived and received treatments in the United States and reported to be cancer survivors in remission for at least five years. All participants were diagnosed with different forms of cancer and had completed treatments during their childhood and adolescence years. They also reported being affected by infertility, among other complications. Additionally, all participants shared the same dream from the time of childhood to be a husband or wife and to have children and a family.
While emerging adulthood provides the stage for establishing individual priorities related to “work, love, and worldview,” this period also offers a time for reflection and active construction of identity, which includes the incorporation of memories, ideals, commitments, and intergradation of personal values and interests (Arnett, 2015; Erikson, 1968). Resiliency in survivorship, including the coinciding complications, has to become a part of individual identity and resonate with gender identity, which is vital for individual mental health while fitting into societal norms/expectations (Arnett, 2015; Bell, 2019; Erikson, 1968; Sumner et al., 2015).
Uncertainty and Restricted Exploration
Discovered treatment-induced infertility often serves as a significant disruption to the plans that survivors wish to enjoy following their ordeal with cancer (Patterson et al., 2012; Ussher & Perz, 2019). The concept of an uncertain future and restricted exploration was discussed by the majority (n = 5) of participants who struggled to create a sense of self considering the unknown challenges related to infertility. They described emotional difficulties associated with “uncertainty” and “not knowing” the status of their reproductive health while they tried to “move forward” when thinking about family composition and desired gender/parental roles. Although identity formation provides the opportunity to consolidate previous life experiences, beliefs, and values (Arnett, 2015; Erikson, 1968; Wood et al., 2018), for EYA survivors, infertility adds a sense of restriction to what their future may look like. The critical task of identity formation for EYA becomes difficult to accomplish in tandem with the uncertainty of the future.
Thus, Participant A, a 21-year-old female, described the ambiguous response she was given when she inquired about her fertility: There's not really a test you can do that says, oh yes, you’re fertile or not. But I got some done, and the doctors said they were cautiously optimistic, whatever that means. (Participant A)
A psychosocial ramification of living with this sense of uncertainty was also described by Participant E, a 24-year-old female who completed her chemotherapy treatment in her teens: I like to know what's coming next; I don’t do well with unknowns. So, coming out of treatment and not knowing what was coming next was very stressful for me. I had an appointment with the reproductive endocrinologist who said, “we have no idea about your fertility, and there's a chance you might be infertile … we won’t know anything for sure until you try to have children. (Participant E)
Although it is more difficult to assess reproductive health in females than in males, the term “cautiously optimistic” heightened participant A's sense of uncertainty in the future. Without the knowledge of how to initiate a further investigation into this issue, Participant A felt unprepared to deal with the situation. However, Participant E took the initiative to seek additional information related to infertility, and her self-advocacy led her to a reproductive endocrinologist, who months later discovered that oocyte cryopreservation (egg freezing) was her best chance at securing the role of being a biological mother in the future.
The consequences of infertility, while often emotional and abstract, are seen concretely in the lives of EYA survivors in regard to developmental tasks. They also have the potential to significantly alter and restrict the realities that survivors experience, including independence and exploration. Participant E discussed how unpredictability and challenges associated with fertility preservation altered her professional plans: I got a job offer as a … fellow in pediatric critical care at S. Children's Hospital, which was really cool. But I also got an offer at Children's Hospital of XX, and although the S. Children's job was more attractive, I knew that there was a big possibility that I might be going through fertility treatment, and I didn’t want to do that not at home and without my parents. So, I kind of chose to stay in the safe zone … home. That shows that this has really limited me. (Participant E)
Participant B, an 18-year-old female, shared how discovering infertility caused her to question who she would become if not a mother, leaving her in a state of identity confusion. A strong dream and desire of becoming a mother and what once seemed a clear and defined future is now an unpredictable and difficult challenge to navigate: One of the roles I want to do is I want to be a mother. So, if I can’t have kids, then that definitely changes my future and what I will be doing. (Participant B)
Participant F, a 24- year-old female who completed radiation and numerous surgeries over 10 years ago, indicated that the unpredictable nature of infertility in her relationship causes further stress with the potential to impact her future marriage to her fiancé: It affects my future with my husband as I prepare for marriage. It is difficult to live with so much uncertainty when it comes to such a big thing. (Participant F)
Infertility is often confirmed after an individual fails to conceive or procreate naturally for an extended period of time (at least a year; Facchin et al., 2019). Confirming infertility in males is a more straightforward process that can be completed through sperm and/or semen analysis. Thus, Participant D, a 29-year-old male who underwent cancer treatment in early childhood for more than 20 years has elapsed since his last chemotherapy treatment and continues to live with the late effects of treatments, including infertility. He describes how his marriage to his wife was the catalyst for confirming his infertility: I have always known in the back of my mind that, just as late effects and issues with my heart could come up, issues with fertility could come up. It was after I got married to my wife. I did a test and then … he said there's a zero percent chance of us getting pregnant naturally. So, that was really the first time that I heard that. I had really no need to see if I was fertile before I was married and so once we got married and wanted to start a family that it was something we looked into. (Participant D)
Challenges to Intimacy and Communication
Infertility in emerging adulthood poses a unique pressure on personal life as individuals may find themselves immersed in a variety of dating behaviors, which creates challenges to intimacy and communication, as reported by a majority of participants (n = 4). Depending on the timing and situation in romantic relationships, emerging adults are faced with the task of disclosing their infertility. Participant E spoke about the stigma associated with being sick as a child and explained how that stigma, together with infertility, restricts and complicates her dating life. It is important to note that cultural and religious backgrounds often impact the ways in which emerging adults attempt to forge partnerships in regard to dating, marriage, and family building. As Participant E explained: The Orthodox Jewish community system is very formalized, and you have to give a lot of information about yourself upfront. Being sick, or having been sick, is … not seen as a wonderful thing. I have to keep it a secret until I feel like it's something serious … it adds a lot of anxiety to the dating process, for sure. (Participant E)
Another survivor (A), who reported being single at the time of her interview, discussed an experience in which infertility became the driving force to end her previous romantic relationship. She reported on the long-lasting impact of this negative experience associated with infertility disclosure and how it continues to serve as a barrier to potential future partnerships. I met a guy last year and he was dead-set on having his own kids. And so, it kind of hit me that, wow, I might not actually be able to do that for him … we broke up over it. I don’t date a lot because I have such a strong fear factor. What if I get attached and there's something that I can’t do that causes our relationship to break? I try not to associate with guys because I’m so scared. (Participant A)
While many participants cited a positive outcome of overcoming cancer and coping with infertility, it is important to note that infertility can also inhibit survivors from having open communication with partners and family members about their wishes, plans, or ability to have children. Participant F, who was engaged to be married at the time of her interview, shared: I worry that I won’t be able to have children with my husband one day, and it is something we will have to face … Our finances would be greatly impacted because we would likely turn to adoption. My family doesn’t discuss when we might have kids, which would otherwise be openly discussed. (Participant F)
The issue of infertility is such a sensitive topic that Participant D and his wife have been selective with whom to share their struggle. While Participant D indicates the importance of communication and familial closeness, he points out that infertility can be a difficult and a rather personal topic to share with others: We haven’t told many people about it just because we don’t want people to feel bad for us or feel bad that they are able to get pregnant, so not many people know. Both of our parents know and both of our siblings know, and very few friends do know. (Participant D)
While typical EYAs are known to explore a variety of relationships and learn about themselves through them (Arnett, 2015), EYA cancer survivors report learning to guard/protect their survivorship experiences instead of celebrating them as a success story. While the participants integrated previous life experiences into the core of the individual self (Arnett, 2015; Erikson, 1968), the use of the words “stigma,” “fear,” “anxiety,” and “restriction” predominated the discussion on relationships, which excludes open communication between partners or family.
Reconstructing Identity Through Redefining Roles
In order to incorporate the knowledge that dreams of parenthood may not be attainable through traditional means, the majority of participants (n = 5) described how encountering infertility has forced them to redefine the concept of what the parental role might look like in their future. Thus, Participant D spoke about the ways in which infertility has called for reflection on his parental role and masculine identity within his marriage. The devastating loss of what might have been not where their story ends. Instead, he and his wife approach the options that are available to them with a sense of resiliency and an attitude characterized by hope. There's definitely a grieving process where you have to change your expectations. If anything, it's made me think about what exactly a family is and what constitutes a good husband and a good father. We have tried IVF and we’re looking at adoption or potentially fostering … it looks like there are different pathways we’re being called to. Knowing that there's a lot of blessings that can come no matter how you grow your family has been a very positive experience. (Participant D)
Participant A, who is currently single, acknowledges that her instinct to nurture and occupy a motherly role may someday be fulfilled by adoption. Similarly to Participant D’s reflection on “different pathways,” Participant A has chosen to redefine her female identity by capitalizing on her natural ability to care for others in a way that is attainable for her. I have a huge motherly instinct. So, I definitely want to find someone and be able to have kids, or in my case, adopt. And I’d like to adopt little ones that I can make a connection with them. But even an older one I wouldn’t be against. (Participant A)
A conscious effort of survivors to reframe a negative situation in a productive and positive manner was supported by the majority of participants (n = 5), who explained how they are using their professional and personal passions to experience the parental/nurturing role by caring for children and giving back to the community. The act of reconstructing identity through redefining roles enables EYA survivors to demonstrate that cancer experience does not define them. Participant C, who is pursuing a degree in graphic design, plans to share her unique skills with others: I just consider what other possibilities I could have as opposed to having children of my own. An eventual goal of mine is to either join a design agency or open up my own where I give pro-bono artwork to nonprofit organizations as a way to give back. (Participant C)
Another participant, Participant F, a third-grade teacher, sees an opportunity to take on the parental role in a fulfilling yet unconventional way to teach. She teaches a class of more than 20 children and tries to be active in her students’ lives. Thus, she reports: I have pictured life differently, and children differently. I am a nurturer, as proven by my elementary school teaching. I always imagined getting to raise my own kids, whereas now I help raise other kids for a year at a time. (Participant F)
Redefining identity “in action” is demonstrated in the story of Participant B, who is currently obtaining her degree. She discussed the personal fulfillment that she hopes to receive by taking on the role of a nurse in the future, saying: Being a nurse and taking care of kids is one of the big things that I want to be. If I can’t end up having kids, which I would obviously love to, that's another way that I can kind of get that “caretaking” feeling. (Participant B)
Coping Through Familial Support
To understand the experiences of EYA survivors coping with the ramifications of infertility, each participant shared information on which coping mechanisms have been most effective. Familiar support was referenced by half of the participants (n = 3), such as Participant A: I need a coping strategy … But, probably family. My mom and I are super, super close. She is my best friend, and we do everything together. And then my brother, too. (Participant A) My sister would do anything for me. She's always joked that she would have to be my surrogate. It shows that we have a close relationship and she is willing to help me in any way. (Participant B)
Some family members may be called upon to provide emotional support, while others may contribute by acting as a surrogate for their loved ones and helping EYA survivors to cope more effectively while providing possible options for dealing with infertility.
Participant D, the only male in the study, also referenced supportive family relationships as an impactful coping mechanism for himself: My wife is completely supportive. She is a biological daughter of her parents, but her two siblings are both adopted. It has been a blessing for her to have had that experience and, kind of, teach me about it. We have always had a good relationship with our parents. If anything, it (infertility) has brought us closer to them because they’ve been helpful as a sounding board and support system for us as a couple. (Participant D)
It is clear that emerging adulthood provides a “perfect storm” for survivors to reflect on and redefine who they truly are in regard to relationships with family, friends, and romantic partners, as well as reshape their dreams and parental desires. Developmental tasks of this age indicate that many aspects of life (relationships, education, gender roles, family composition, and marriage) have the potential to be restructured while incorporating survivorship and infertility with core gender identity, societal requirements, and personal preferences.
Discussion
While more children with cancer live into adulthood, knowledge of coping with complications while providing age-appropriate psychosocial support within these populations remains critical (Patterson et al., 2012; Phillips & Jones, 2014; Warner et al., 2016). The current study demonstrated the importance of taking a closer look into the lives of childhood cancer survivors by revealing psychosocial and developmental challenges associated with life after cancer that require specific attention from medical and rehabilitation teams (Bell, 2019; Warner et al., 2016), as challenges associated with infertility set them apart from typical EYAs.
Identity Formation and Timing
In support of the guiding theory, EYA survivors are actively working on forming individual identities while trying to integrate their survivorship experience, including infertility, into their core identity (Arnett, 2015; Bell, 2019; Erikson, 1950; Ussher & Perz, 2018). The inability to have biological children could be newly discovered by EYAs survivors, which can impact their sense of self and becomes a priority to address in tandem with other developmental tasks. This sensitive and complex process is especially traumatic for young females in the study (Bell, 2019; Facchin et al., 2019). Female survivors find themselves in “role confusion” while reflecting on the internal question, “Who am I, if not a mother?” Infertility, in those cases, threatens the process of forming a gender identity and may require a longer time for the individual to explore potential and acceptable options.
While the timing of emerging years (18–29) creates a “perfect storm” to redefine identity, it also allows time to flexibly investigate possible options (fostering, surrogate, and potential medical advances) while forming gender identity affected by infertility. It is important to understand the timing and sensitivity of the issue as some younger participants are not ready to deal with infertility yet by withdrawing from dating and focusing on education. Others, though, actively sought additional knowledge and options to address infertility. Infertility faced by EYA also added challenges for survivors’ developmental tasks by limiting exploration and freedoms typical for EYAs, in addition to altering discoveries and communication style while looking for a romantic partner.
Developmental Challenges
While typical emerging adults utilize this period to try new things and explore new roles (Arnett, 2015), study participants voiced a different reality related to their ability to try new roles, venture away from their parents’ homes, and achieve intimacy with romantic partners. Consistent with previous studies (McClellan et al., 2013; van den Berg & Langeveld, 2008), the majority of survivors struggled with the lack of information they received regarding their reproductive health, which contributed to a sense of “uncertainty and restriction.” The demands of fertility preservation prevented one survivor from moving away from her family to pursue a “dream” career opportunity, while others had to rethink their exploration and withdraw from dating while dealing with infertility.
In support of previously reported literature (Warner et al., 2016), infertility created challenges to intimacy and communication as participants admitted to struggles related to building family and romantic relationships, especially surrounding communication; as a result, some survivors found themselves in a state described by Erikson (1950) as “isolation.” The negative experience of disclosure “anxiety” and “fear” of navigating when and how to share information regarding infertility contributed to additional stress for participants, while others had experienced rejection based on their inability to procreate. These traumatic experiences not only serve as a threat to forming a healthy identity for a young individual but also teach them to guard their survivorship experience. The use of the words “stigma” and “grieving the loss of biological parenthood” describing their unique experience also indicates that participants could benefit from psychotherapy and counseling support while learning strategies to disclose and cope with infertility within the context of relationships.
Survivors’ personal stories provided powerful examples of restructuring identity through redefining roles and how they reshape their identity to meet expectations regarding parenthood. Some participants spoke about their wishes to adopt or foster children; others reported desires to channel their instinct to nurture into their professional roles as teachers, nurses, and artists. Emerging adulthood provides a great opportunity to explore potential professional roles and affiliations, discovering the options to restructure professional calling in order to fulfill the internal need to nurture and care for children in a meaningful way.
Coping through familial support was cited by survivors as a coping strategy when dealing with the sensitive nature of disclosing infertility, which is contrary to typical EYAs who seek support from friends (Sira et al., 2019; Warner et al., 2016). While research indicates that family support during and after treatment is helpful for adaptive coping (Banner et al., 1996; Chaves et al., 2019; Sira et al., 2019), including coping with the late effects of treatment (Phillips & Jones, 2014), literature also refers to family relationships in survivorship as a source of either “resource or restraint” (Banner et al., 1996). For young survivors who may be seeking freedom and independence while forming unique identities, “resource or restraint” becomes even more relevant as the female survivor who ultimately chose to turn down a dream professional opportunity in favor of living at home with her parents. This extreme reliance may interfere with the typical developmental outcomes expected with regard to establishing autonomy and independence as a young adult.
Limitations
While the results of this study add valuable information related to developmental challenges among EYA cancer survivors faced with infertility, they should also be viewed in the context of limitations due to the explorative nature of qualitative research, purposive sampling leading to a smaller sample, and the sensitive nature of the topic. Further, participants in the study were recruited through an organization that supports and provides scholarships to cancer survivors. Thus, the educational achievement and aspiration level of these participants may not be essentially representative of a broader group of EYA cancer survivors. Hence, even though the transferability of the results may be limited, it does not diminish the informative experiences shared by survivors. Because some survivors were not ready to talk about the challenges of infertility, having interviews with family and friends could have provided a more cohesive picture.
Practical Implications
The field of nursing (as well as other professions trained to honor the biopsychosocial health of patients) maintains a commitment to care for the whole person respective of patients’ age, developmental tasks, family dynamic, and culture. Having a serious illness as a child along with treatment-induced infertility in later years poses a plethora of challenges to young survivors as they grapple with developmental demands, strive for autonomy, form individual identities and romantic relationships, build professional competence, and seek to create meaning in their lives, that is “not defined by cancer.”
Recognizing developmental stressors in combination with secondary complications such as infertility is essential in order to provide high-quality follow-up care for these individuals. “Follow-up” clinics and survivorship programs should be purposeful in providing practical support for survivors facing complications. Relationship education and psychosocial developmentally guided help where experts could address topics related to identity, relationship building, intimacy, and infertility, including sexuality, in both group and individual sessions would be beneficial. Because of their developmental stage, EYA survivors appreciate guidance and support from other survivors of similar age. Multidisciplinary healthcare teams should be aware of the developmental challenges that EYAs face in late survivorship and help survivors identify support groups in close proximity or reliable forums. Having networks or gatherings with fellow survivors who experience similar challenges may provide not only effective coping strategies and opportunities for socialization but could also reduce the stigma attached to infertility. Meeting survivors who have had positive experiences despite infertility and were able to find solutions for parenting, whether via surrogates or adoption or professional work connecting to nurturing instincts, could offer powerful examples for newly diagnosed infertility survivors.
Introducing educational paths that positively resonate with survivors’ desires to work with children is vitally important for this population. The benefits of professional work with children could open additional opportunities to explore for those who struggle with infertility.
The joy and stress of providing practical, financial, and socioemotional care to others can also become a burden, specifically for family members who have already endured the tremendous hardship of seeing their loved ones overcome cancer. Information regarding healthy coping mechanisms and resources on developmental challenges of EYAs could be beneficial for family members who continue to provide support to their loved ones following the completion of treatment.
Knowing the side effects of cancer treatment, such as infertility, nurses and multidisciplinary team members working with teens should provide appropriate information to patients and their families while understanding that it may not be a priority for them at this time (Klosky et al., 2014). Communicating fertility risk and preservation options (Klipstein et al., 2020) at diagnosis and facilitating timely discussion for families, medical providers should understand that using options for fertility preservation can instill hope and optimize coping not only for young patients but also for their family members.
Study findings indicate the need for support of those EYA cancer survivors currently experiencing treatment-related infertility. However, due to recent developments in fertility preservation for prepubertal patients, infertility should not be a defining factor for many childhood cancer survivors in the future. Proactively addressing the critical survivorship issues of fertility should be considered throughout follow-up, to address timing and safety for those at risk for infertility. Multidisciplinary team members should be able to counsel patients and their families with accurate, up-to-date evidence about this critical issue based on guidelines crafted (Font-Gonzalez et al., 2016).
While helping prepubertal and pubertal patients know of their fertility risk and preservation option is very important, accepting treatment-related infertility as an inevitable aspect of survivorship is vital and changes are needed to ensure high-quality medical care at the societal and policy level. For individuals diagnosed with cancer at a young age, male or female, medical insurance should cover the preservation options for the affected group along with coverage for assisted reproductive technologies for those who are ready to conceive at a later point in time. Treatment-induced infertility is a medical condition and should be treated as such, and insurance coverage should reflect that, in addition to providing not only medical care and financial guarantee, but also moral support and hope for those affected.
Summary
Emerging adulthood is a time of developmental achievements, exploration, and experimentation (Arnett, 2015; Wood et al., 2018). Facing treatment-induced infertility provides a disruption in the lives of EYA survivors and creates a “restricted and uncertain” path for reaching typical developmental milestones, including a healthy identity. The implications of this study ultimately encourage multidisciplinary care providers to consider the unique psychosocial and developmental needs of young survivors when considering treatment and rehabilitation plans. In providing care for the health of EYA survivors, it is imperative to address threats to identity formation, challenges to relationship building, communication, and barriers to exploration. This growing population of EYA survivors is deserving of care that extends beyond the elimination of the disease.
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.
