Illness Uncertainties Tied to Developmental Tasks Among Young Adult Survivors of Hematologic Cancers

Abstract

Purpose:

Young adulthood is a period of building autonomy, relationships, and careers. Experiencing cancer as a young adult (YA) is an “off-time” event in the normative adult life cycle and may interrupt age-specific goals. The majority of prior research on illness uncertainty centers on medical concerns about recurrence or mortality. The current study identifies how YA survivors of hematologic cancers, an understudied group, experience illness uncertainties related to the developmental tasks of young adulthood.

Methods:

This is a qualitative study of 53 YA hematologic cancer survivors, ages 20–39. Participants completed hour-long semistructured interviews about psychological, social, and treatment-related aspects of their cancer experience. Interviews were transcribed and coded using an abductive approach to qualitative analysis.

Results:

Most participants (80%) spontaneously described at least one illness uncertainty tied to developmental tasks. Fertility was the most commonly reported type of uncertainty (55%), with more women than men reporting it, followed by family and intimate relationships (43%), peers and social life (36%), and academic or career goals (26%). These uncertainties were described with reference to the off-time nature of illness. Example excerpts are provided and interpreted.

Conclusions:

These findings have the potential to advance our understanding of the cancer experience of YA survivors by expanding on the notion of illness uncertainty in this population. Given the extent to which uncertainties related to developmental tasks were reported, tailored interventions targeting these concerns may improve quality of life among YAs with hematologic cancers.

Introduction

The theory of illness uncertainty defines uncertainty as a cognitive representation in which the meaning of events is ambiguous and the future difficult to predict.¹ Many medical uncertainties arise around treatment, symptoms, disease progression, and prognosis. Cancer patients wonder about treatment efficacy (e.g., is chemotherapy working?), disease progression (e.g., will I die?), and recurrence (e.g., will my disease come back?).^2,3 Although the literature has largely examined the medical uncertainties mentioned above,^4–6 cancer can also generate other types of future-oriented concerns.

A handful of qualitative studies have examined perceptions of illness uncertainty that may indeed be triggered by an illness diagnosis and subsequent treatment, but manifest in nonmedical tasks. Cancer survivors and their partners, aged 22–86, reported uncertainties that extended beyond solely concerns solely medical in nature, such as those related to their [already] established careers or families.⁷ Among middle-aged organ transplant patients, participants wondered how the transplant would affect their romantic relationships.⁸

The aforementioned studies underscore the importance of broadening the traditional conceptualization of illness uncertainty to also include nonmedical concerns, but do not explicitly focus on developmental context such as the period of young adulthood. One study of six young adults (YAs) undergoing chemotherapy described different sources of uncertainty (including medical sources), coping with uncertainty, and concerns around the feasibility of life goals.⁹ We aim to expand this work by homing in on the perspectives of YAs with cancer as they relate to concerns about the developmental milestones of young adulthood. Henceforth, when using the term illness uncertainty in this article, we refer to uncertainties that are generated as a result of the cancer diagnosis and treatment, but are about personal, social, and professional age-specific tasks.

Cancer in young adulthood: an off-time event in the normative life cycle

Approximately 70,000 adolescents and YAs between the ages of 15 and 39 are diagnosed with cancer annually.¹⁰ Young adulthood is a time of growth and change. The earliest adult years, termed emerging adulthood, are characterized by the development of self-concept and identity, engagement in self-exploration, building of intimate and peer relationships, and pursuit of educational or career goals.¹¹ Typically, establishing a career, choosing a life partner, and, for many, having children are age-related tasks that mark the later years of young adulthood.¹² Given socioeconomic trends in 21st century North American society, many individuals in their mid-to-late thirties are still addressing the developmental tasks of young adulthood.^13,14

Illness in young adulthood is a unique experience, one that is “off-time” in the normative adult life cycle.^15,16 A commonly held assumption is that YAs are at peak physical health. A life-threatening illness, such as cancer, fundamentally disrupts this normative belief. YAs with cancer may develop uncertainties about future-oriented concerns tied to developmental milestones that have been compromised or “interrupted.” Such interruptions may generate challenges in the still-developing biographical narrative of YAs with cancer. Existing literature has focused on adolescents and YAs with many types of cancer, providing a valuable overview of the range and degree of unmet needs in different domains (e.g., financial, spiritual, and social), which have been linked to lower health-related quality of life.^17–19 However, these studies do not provide detail on how unmet needs result in perceptions of uncertainty within the developmental context of young adulthood. Adolescents and YAs are often grouped together although both medical research and psychosocial research show that these are distinct life stages.^19,20

While leukemia and lymphoma are among the most prevalent cancer diagnoses in adults 18–39 years of age,²¹ data also suggest that hematological, lung, and gynecological cancer patients (of all ages) experience greater anxiety compared to other cancers, with over 50% of hematological cancer patients reporting subclinical or clinical levels of anxiety.²² It is possible that uncertainty around developmental tasks may be contributing to some of this anxiety among YAs. In recent years, the overall 5-year survival rates for leukemia and lymphoma have increased,²³ highlighting a need to understand how to optimize quality of life among YAs with hematological cancer (HC) as they begin to negotiate reentry into their “new normal” life. At the same time, it remains important to acknowledge that compared to pediatric cancer patients or older adults with cancer, YAs remain an understudied population in studies regarding clinical care, both in terms of cancer therapies and psychosocial support.²⁴

The current study adds to the existing literature on YA survivorship using a qualitative methodology to integrate theories of young adulthood¹¹ and illness uncertainty¹ with participants' unique experiences and to identify uncertainties tied to the developmental tasks of young adulthood. Specifically, the study's aims are to: (1) identify perceptions of uncertainty tied to age-specific tasks that YAs with HCs experience; and (2) understand how their experiences of uncertainties are shaped by the off-time nature of illness and developmental stage of young adulthood. Using an abductive approach allows for a thematic analysis that combines inductive and deductive reasoning in an iterative process and allows for systematic combining of existing theories with insights from participants' interview data.^25,26 Uncertainty about multiple life goals and accomplishing developmental tasks emerged in almost all interviews as a central aspect of the cancer experience.

Methods

Recruitment

We selected all participants that fell within the age range of 18 to 39 (n [number] = 53) from a larger study for a larger mixed-methods study of 60 hematologic cancer survivors. Participants were recruited from a major cancer center and national YA cancer advocacy organization between September 2011 and November 2014. YA cancer advocacy organizations have been shown to be an excellent recruitment method to gain access to YA survivors nationally.²⁷ Participants were eligible if had a diagnosis of hematologic cancer made more than 3 months but less than 5 years before participation, with no history of other cancers with the exception of nonmelanoma skin cancer.

Twelve of 20 eligible individuals were recruited at the cancer center and interviewed on the same day as a medical appointment. At the advocacy organization, potential participants were informed of the study through social media posts or screening at organizational events. Of 120 interested and eligible individuals, 41 chose to complete the study. As “survivor” signifies a diagnosed individual still living,²⁸ participants undergoing treatment, as well as those not receiving treatment, were included in this study. Student's t-tests were used to test for demographic differences between participants recruited from the cancer center and those from the advocacy organization.

Procedures

Psychologists or advanced doctoral students conducted the semistructured interview. Informed consent was obtained after the study was described and participation solicited. Demographic and medical data were obtained with a brief questionnaire, completed immediately after in-person interviews and through a unique link immediately after Skype interviews. Participants received an honorarium of $50 (cash or e-gift card) for their time. The appropriate institutional review boards approved the study.

The semistructured interview guide covered a number of broad areas: the “cancer story,” including treatment and changes in school/work; social relationships; sexuality and body image; fertility; parenting (if appropriate); and the experience of living with cancer. Topics were presented in the same order with adjustments for conversational flow. Participants were not asked explicitly about uncertainty in any of the topic areas; when participants discussed uncertainty, they did so without prompting. Interviews were conducted in person or by Skype, digitally recorded, and transcribed verbatim.

Qualitative coding

A codebook was developed to explore uncertainties tied to developmental tasks, using an abductive approach to thematic analysis.²⁶ The initial categories originated from developmental theories of young adulthood^11,12,29 and existing knowledge on illness uncertainties about nonmedical tasks, such as building relationships or developing careers and families.^4,8,30 Interviews were coded with Dedoose (version 7.0.23, 2016).

The first and last authors reviewed all transcripts before coding commenced and developed an initial coding scheme consisting of three broad categories (i.e., fertility, academic or career goals, and social relationships) based on existing knowledge about uncertainties tied to developmental tasks. Using this scheme, 12 randomly selected interviews (20%) were coded by the first author. As the abductive approach is iterative and allows for combining existing knowledge with interview data, the first and last authors determined that the social relationships category would be divided into two categories as follows: uncertainty about family and intimate relationships and uncertainty about peers and social life. Over the past several decades, there has been a discernible shift in dating culture among YAs, in that young adulthood, for many, is marked by casual dating or sexual exploration,¹¹ which do not necessitate the subsequent start of a relationship.^31,32 As such, concerns about casual dating or “hook-ups” were coded under “uncertainty about peers and social life.” Concerns about current or potential romantic attachments in relation to “settling down” (S124) or long-term partners (e.g., “Is he going to take care of me in my old age?”; S146) were coded under “uncertainty about family and intimate relationships.”

Thus, the revised coding scheme included four categories of uncertainty as follows: fertility; close relationships (family and intimate relationships); peers and social life; and academic and career goals. Using this revised scheme, transcripts were coded by the first and second authors, health psychology doctoral students, and an undergraduate research assistant, with each transcript coded by two individuals. Six transcripts were randomly selected to calculate inter-rater reliability; Holsti's coefficient was 0.88. Discrepancies were minor (e.g., a missed excerpt) and resolved through discussion among coauthors in team meetings.

Results

Participant characteristics

Table 1 presents the demographic and medical characteristics of the sample. Of the 53 participants, 36 (68%) were women (M [Mean]_age = 28.4; SD [standard deviation] = 5.0; range = 20–39). Participants received their cancer diagnosis at an average of 28 months before being interviewed (SD = 21.1), and average age at diagnosis was 25.9 years (SD = 5.3) Four participants in the sample were diagnosed more than 5 years ago (M = 5.9, SD = 0.5). In reviewing raw data, there were no meaningful demographic or medical differences between them and the other 49 participants in this sample. Moreover, because this is an observational qualitative study describing the subjective experience of uncertainty related to developmental tasks among YAs, the study team agreed on the decision to include these participants upon seeing no foreseeable issues impacting study design or validity of findings.

Table 1.

Demographic and Medical Characteristics of Sample

	n	Percentage
Gender
Male	17	32
Female	36	68
Age decade
20–29	32	60
30–39	21	40
Sexual orientation
Heterosexual	50	94
LGBT	3	6
Race/ethnicity
White	42	79
Black	5	9
Hispanic	4	8
Asian/Pacific Islander	2	4
Relationship status
Single (never married)	32	60
Married/partnered	18	34
Divorced	3	6
Has children	6	11
Education
Some or less than high school	2	4
High school graduate	7	13
Some college	10	19
College graduate	23	43
Graduate/professional degree	11	21
Employment status
Employed	30	57
Unemployed	12	23
On medical leave or disability	11	21
Cancer type
Hodgkin lymphoma	29	55
Non-Hodgkin lymphoma	13	25
Leukemia	11	21
In active treatment	10	19
Had a transplant	11	20
Time since diagnosis
Less than 2 years	27	51
Between 2 and 5 years	21	40
More than 5 years	4	8
Missing	1	2

N = 53. Percentages were rounded and may not sum to 100.

Participants recruited through the cancer organization were younger (M = 27.41; SD = 4.40) than those recruited at the cancer center (M = 31.67; SD = 5.83), t(51) = 2.73, p = 0.009, 95% confidence interval [CI]: 1.13–7.38, and Hedges' g = 0.90. They were also more educated (M = 3.88, SD = 0.90) than those recruited from the cancer center (M = 2.83, SD = 1.27), t(51) = −3.21, p = 0.002, 95% CI: −1.70 to −0.39, and Hedges' g = 1.05. Education completion ranged from 1 (some high school or less) to 5 (graduate or professional degree). Interviews lasted an average of 50 minutes (SD = 15.34).

Uncertainties that are important to YA HC survivors

Approximately 80% of the sample described at least one uncertainty around a developmental task. The most commonly reported uncertainty was fertility (55%), followed by family and intimate relationships (43%) and peers and social life (36%). Somewhat surprisingly, academic and career goal uncertainties were described by only 26% of the sample (Table 2).

Table 2.

Percentage of Sample Reporting Each Type of Uncertainty—Full Sample and by Gender

		Gender
	Total (N = 53)	Women (n = 36)	Men (n = 17)
	N (%)	n (%)	n (%)
Types of uncertainties
Fertility	29 (55)	23 (64)	6 (35)
Family and intimate relationships	23 (43)	17 (47)	6 (35)
Peers and social life	19 (36)	14 (39)	5 (29)
Academic or career goals	14 (26)	11 (31)	3 (18)
At least one uncertainty	42 (80)	30 (83)	12 (70)

Uncertainty about fertility

Uncertainty about fertility was the most commonly reported among participants. Women (64%) reported uncertainty about fertility more often than men (35%). Many participants described a sense of loss and sadness at the possibility of infertility. Younger women (aged 20–29) expressed being unready for motherhood, which was not something they had planned in the immediate future, often choosing to finish school or begin careers first. At the same time, they described internal or external pressures to have children earlier than planned, sometimes because of the possibility of premature menopause:

I don't know my fertility status. My period's returned, but that's not a guarantee that I'm fertile. It makes things like get really anxious, because I'll think—I mean, I'm not planning on having kids anytime soon, but I do want to have kids someday, and I worry that by the time I'm at a point in my life where I'm ready, because of my chemo I'll go into menopause earlier than most people, that my time is running out… (S [subject] 122, 25-year-old woman).

Some participants linked the possibility of infertility with uncertainty about intimate relationships. They felt less desirable to a potential partner due to uncertainty regarding their potential infertility. For others, this uncertainty raised concerns about the possibility of adoption.

I would like to know my [fertility status], because it affects where you go with dating and future planning and things…[and the] kind of the people you consider in a relationship. But, you know, not knowing puts me at what I feel is a disadvantage because I'm conscious of it. And having to deal with the whole thought process of all the investment and all the work that goes into trying to adopt a child, it just gets—it's kind of overwhelming. (S133, 28-year-old woman).

Both women and men described a need for health professionals, particularly oncologists, to provide more opportunities for discussions regarding fertility options. They wanted physicians to describe the possible effects of cancer treatment on fertility and to review options for fertility preservation early on in the decision-making process. Some participants who had already completed treatment expressed “should” statements in reference to their doctors (e.g., the doctor “should” have talked about this with me), given that they were in their prime reproductive years. One woman expressed feelings tinged with both anger and regret:

It wasn't really something that was talked about to me. And I feel like it should've been, especially at my age, just being kind of on the brink of, you know, that's like your time. So I guess I've kind of always had it in the back of my mind. I probably wouldn't have even known about it at all, that like treatment affects that for you if I wasn't like doing my own research and stuff. (S151, 22-year-old woman).

Others who had completed treatment spoke about how their decisions before treatment were affecting them now. For example, a 26-year-old woman shared that when presented the option, she did not follow through with oocyte cryopreservation to avoid further treatment delays. While still unsure about having children, she was concerned about the possibility of changing her mind one day but no longer having the option. Among participants still undergoing treatment, a few spoke about fertility concerns as being on the “back burner,” but anticipated these concerns coming to the forefront in the future.

Uncertainty about family and intimate relationships

Participants spoke about uncertainty in the context of family and intimate relationships in several ways. Those undergoing treatment were uncertain about how to discuss prognosis with family members to allay concerns when they themselves were unsure. Some participants discussed uncertainties related to parenting a child they might have. Even those who had completed cancer treatment perceived the disclosure of cancer-related information to family members as challenging. Participants who were already parents—mothers, in particular—spoke at length about how to communicate cancer-related information to their children. Given that the cancer can recur, one woman wondered whether she would be “present” for her children.

So what keeps me up at night is the fact that I have a daughter that needs me to be around for a very long time, and I want to be around for a very long time, but knowing that I've had cancer and that there is always a chance it could come back…those things keep me up at night even aside from the pain. (SS118, 39-year-old mother).

Men also talked about not being present in the future and whether they would be able to provide for their families. A 34-year-old father noted that this was a “tricky” age for him to be ill, as he has to continue working to care for his children, raising concerns for the family's well-being.

For the single people in our sample, uncertainties about having a “serious” relationship loomed large. These concerns often centered on the consequences of disclosing cancer status to a potential life partner. One man captured it this way:

How am I gonna approach [someone] and say, “Oh, why don't we go out to dinner?” You start to get to know the person, start to talk to them–next thing you know you're telling them that you were diagnosed with cancer, and that you go to the doctor once a week, and that, you know, you spent this time in the hospital…you could be the best thing since sliced bread to this person prior to the start of that conversation, but they may be turned away from that. (S101, 27 years).

His feelings were echoed by a young woman:

I mean, look, I think about it sometimes when I am like dating online, like when do I tell the guy that I have cancer, like, you know, is he gonna like wanna not be with me because maybe he's afraid? Like he's gonna have to take care of me in like my old age, if I get to old age, or whatever, you know.” (S146, 30 years).

As these excerpts illustrate, many did not feel it was fair to burden a potential or existing partner with an uncertain future; others simply wondered if they would even be alive to meet their significant other.

Both women and men described how cancer-related changes in their physical appearance reduced their desirability to potential long-term partners. Interestingly, these uncertainties appear to conform to traditional gender norms. For many women, uncertainties involved physical appearance, for example, weight gain, scarring, and hair and eyebrow loss. For men, they often involved the loss of strength and virility, including uncertainty about sexual dysfunction, when navigating intimate relationships:

If you're looking to settle down, it could be a potential deal breaker to a lot of people if somehow treatment has altered your libido or altered your readiness…if it's someone that you're looking to settle down with, you kind of have to put it out there and say, “Hey listen, this is what I've been through, and this is my story, and how do you feel about that?” But some people might get freaked out early on… (S124, 29-year-old man).

Uncertainty about peers and social life

Uncertainty about disclosure also emerged with the extended social network, outside of family members, with peers and casual dating/sexual partners. Peers or friends are major sources of social support for YAs and, yet, navigating friendships often became a cause for concern. Some participants wondered how acquaintances and friends would act toward them after finding out about their cancer; would the experience of cancer change how they were treated?

There were some people who I had made friends with while I was in school. I wasn't really sure how to go about telling them…Do I tell them, do I not? How are they gonna react when I do tell them? So it kind of took me a while because…I didn't know how they were going to react or how they would judge me. (S141, 30-year-old woman).

YAs also discussed the loss of friends because of their friends' discomfort with the fact that they had cancer. A participant undergoing treatment wondered about the recent “disappearance” of a close friend', alluding to feeling abandoned in her time of need. She shared:

… what the hell? I'm like where is she? Do I have to, you know, chase after her? I'm going through a rough time right now. I don't need to be like, “Where are you?” She disappeared completely. Either this is too heavy for her or—I don't know… (S151, 22-year-old woman).

Such experiences, in turn, generated uncertainty about how new friends might react or whether they would be supportive across many participants. One man described difficulties finding long-term friendships after diagnosis and treatment completion:

… my oldest, closest friend, who no longer speaks to me. So, you know, really the only people I had here—you know, this is a rough city. I haven't really formed any close connections with people here… I was getting closer to people in school, but obviously, you've known somebody for two or three months and something like that happens, you can't, you know, expect them to [be there]. (S140, 26 year old).

Others spoke about how the possibility of recurrence kept them isolated and created uncertainty in forming new friendships because they felt different or disconnected from same-age peers. One young woman described her uncertainty around whether or not she would be able to keep it “together” in front of friends if cancer recurrence came up in conversation. Another described uncertainty about “hanging out” with friends because she feared getting sick in front of them (e.g., what if I started to vomit?). Friendships were no longer easy and, to avoid embarrassment or rejection, some of the YA survivors in our study isolated themselves from peers to prevent these scenarios from occurring.

Uncertainty about academic and career goals

Young adulthood is a time of self-discovery and exploration; this includes finding one's path to attaining academic goals and/or furthering one's career.³³ For many participants in their 20s, uncertainty centered on the pursuit of educational or career goals. Concerns focused on returning to college or finishing a degree because of treatment or recurrence. Interruptions in the normative 4-year college plan called into question both reasons for pursuing academic endeavors and beliefs about what might happen to future career plans:

I always had the plan set, you know, I'm gonna go to college, I'm gonna get good grades, I'm gonna take the MCAT and get into med school. And then, you get cancer and suddenly it's like you don't know what's gonna happen and you realize how like fragile the future really is. You don't really know what's gonna happen tomorrow or next week. (S149, 22-year-old woman).

In contrast, participants in their 30s described uncertainties about returning to an established career, whether they would have a job to return to after treatment, or if their leaves of absence would jeopardize career advancement. Others framed concerns in terms of financial stress: if the cancer recurred or additional treatment was needed, would they be able to work and support their family? These uncertainties had a cascading effect on other types of uncertainty. One 31-year-old woman noted:

But, you know, I think there—we kind of—I feel like young adult patients have to deal with kind of the intersection of issues…we have to think about things like fertility and having a relationship and what your future life is going to be like, but you also have to deal with real life responsibilities like having a job, how am I gonna pay the bills? ….I think it's probably more complex than people realize (S137).

A few participants who had returned to work did not disclose their cancer to coworkers. Some wondered whether their colleagues would reject them. Others refrained from disclosing their cancer status because they were concerned about discrimination at work. For example, a 31-year-old man pondered if taking longer to complete an assignment would be attributed to his cancer even if this were not the case. Although concerns about the sequelae of disclosure can occur at any age, they were particularly salient for younger survivors who had not yet achieved job security, established strong professional networks, or had a long-standing professional reputation. These concerns were present among those still undergoing treatment and those who had already finished treatment.

Discussion

While this is not the first qualitative study to discuss uncertainty about cancer, it is the first to use an abductive approach to explore perceptions of uncertainty tied to various developmental tasks among YAs with HCs. Without prompting, the majority of our participants discussed one or more uncertainties. We should thus expand our notions of psychological adjustment to include the experience of nonmedical uncertainties related to developmental tasks of young adulthood.³⁴ Our findings codify what many of the YAs' concerns are, so that they may be addressed as part of standard treatment for YA survivors and be useful in tailoring age-appropriate psychological interventions.

Uncertainties and the clinical care of YA survivors

Uncertainties around developmental tasks are important considerations in the clinical care of YA cancer survivors. Chemotherapy can cause a low sperm count or damage to semen quality in men,^35,36 as well as premature termination of ovarian function among women or even early menopause.^37,38 Consequently, fertility preservation is an issue that should be central in the early care of any YA with cancer. Our thematic analysis strongly suggests that YAs' uncertainty around fertility was exacerbated by lack of medical information³⁹ and appropriately timed discussions with doctors about the impact of treatment on fertility.⁴⁰ In studies of YAs with cancer, participants have reported feeling ignored or dismissed when they mention fertility concerns to their providers; others report a lack of discussion on fertility during or after treatment.^41,42 Accounts from YAs do not necessarily suggest that medical providers are uninterested or unaware of the fertility concerns or risks, but rather that clinicians may need more focused dedicated skill training on how/when to discuss these issues with their YA patients.⁴³

There were also gender disparities in the expression of uncertainty about fertility in this sample: 64% of the women compared to 35% of the men expressed this uncertainty. Several reasons may have contributed to this discrepancy. The impact of treatment on menses may have led to more discussions of fertility among women. YA women treated with high-dose cancer therapies have been shown to have ovarian reserves comparable to women in their 40s.³⁸ While sperm banking is not possible for all men with HCs due to potential decreases in sperm motility or morphology,⁴⁴ it is a viable option for many that generally poses little delay to the onset of cancer treatment; sperm banking may provide a sense of security for men.⁴⁵

Among women, embryo and oocyte cryopreservation are among the more common fertility preservation methods for women. These are more complex procedures that involve a number of considerations, such as the collection of [enough] mature oocytes, whether treatment delay is needed and risky, and if sperm can be obtained from a partner or a donor for embryo preservation.⁴⁵ Consequently, it may be possible that women have more uncertainty about preservation methods and their likelihood of having a genetically-related child. Socioculturally, the gender difference may have occurred because women have been traditionally viewed as responsible for (in)fertility both by themselves and others and may face greater stigma than men when childless.⁴⁶

Generally, YAs with cancer often report financial and insurance coverage concerns as barriers for obtaining timely medical care.⁴⁷ Although fertility treatments can be expensive, with insurance coverage differing state-by-state, the American Society of Clinical Oncology practice guidelines recommend that medical providers actively encourage YAs to determine out-of-pocket costs and investigate cost-saving programs for fertility preservation offered through advocacy organizations such as LIVESTRONG.⁴⁸

In treating YAs with HC specifically, standard fertility preservation options can present distinct challenges. For particular types of leukemia and lymphoma, patients often require urgent chemotherapy, which may not leave enough time to harvest oocytes. In addition, hematopoietic cell transplantation, a potentially curative procedure for many HCs, is strongly associated with enduring fertility issues among men and women.^49,50 Clinical work targeting information gaps that individuals with HCs report³⁹ may not only reduce uncertainty about fertility options but also minimize subsequent distress and decisional regret. In cases where discussions before treatment are not possible, a referral to a reproductive specialist is considered an appropriate course of action.⁴⁹

Navigating family and intimate relationships, as well as academic and career goals, is already challenging for YAs as they negotiate their independence, seek romantic and sexual partners, and build their personal and professional identities.^11,47,51 Participants were uncertain whether the possibility of reduced sexual function or physical attractiveness as a result of cancer treatment reduced desirability to future or current partners. A large quantitative study of adolescent and YA survivors demonstrated that along with sarcoma, those with blood cancers (i.e., Hodgkin and Non-Hodgkin lymphoma and leukemia) were more likely to believe that cancer negatively impacted their plans for returning to work and employment compared to other cancer sites.⁴⁷ Findings from the current qualitative study elucidate perceptions of uncertainty, specific future-oriented concerns, among YA survivors of hematological cancer in this domain. For example, at this developmental life stage, many YAs did not feel that they had enough job security to justify future work absences. Others described uncertainty about whether or not to disclose cancer status to colleagues or superiors—would it do more harm than good? Coping with the diagnosis added additional complexity to achieving developmental milestones, perhaps because these tasks are not yet “secured” in young adulthood.⁵²

Participant descriptions of uncertainty related to peer relationships highlight the off-time experience of cancer for YAs, leading to social isolation at a time when peer relationships are essential. A way to bridge the isolation from peers is to connect YAs with same-age survivors, which itself is considered an unmet need.⁵³ Sharing concerns with similar others who have cancer may provide needed and valued support and also help circumvent isolation and depression. These psychological issues may be addressed in traditional therapy or counseling or participation in organizations for YA survivors.

Strengths and limitations

The large sample in this qualitative study provided rich data on the type and content of uncertainties related to developmental tasks faced by YA survivors of hematologic cancers, but the study is not without limitations. While this study focused on HCs, YAs with other types of cancers (e.g., breast and germ cell) may also experience uncertainties tied to developmental tasks. The fact that over half of the respondents were recruited from an organization for YA survivors may limit generalizability, as these individuals had access to internet-based or, in some cases, in-person community support. Similar to general issues of self-selection in qualitative studies, it is possible that our sample was healthier given their ability to participate in a semistructured interview or had more time to participate. At the same time, the number of participants discussing uncertainty around relationships suggests that even “connected” YAs feel uncertainty and distress. Conversely, YAs who joined the advocacy organization or viewed the website may have sought community-based support because they were sicker or more distressed than those who did not join the organization or participate in the study.

Conclusion

Using an abductive approach, this study is the first to elaborate on the nature of uncertainties tied to developmental tasks among YA survivors of hematological cancers. Findings shed light on how cancer is an “off-time” event for YAs who are neither adolescents in the pediatric ward nor older adults who have surpassed the developmental milestones of young adulthood. Our data show that YAs with cancer have unique concerns that are linked to the developmental tasks of their age. Finding a life partner, building a family, and solidifying a career are significant developmental tasks for 21st century YAs.¹¹ Concerns about “interruption” to these age-specific tasks have the potential to shape life decisions and, as such, should be central to survivorship care plans for YAs with cancer.

Footnotes

Acknowledgments

The research was supported by a grant from the Anthony Marchionne Foundation. The authors thank Sylvia Wood, DNP, Matthew Zachary, CEO, and the organization Stupid Cancer for their assistance with the study. The authors also thank Helen Coons, PhD, and Guadalupe Morales, BA, for their assistance in the early stages of the study.

Author Disclosure Statement

No competing financial interests exist.

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