“It Changed Our Outlook on How We Want to Live”: Cancer as a Transformative Health Experience for Young Adult Survivors and Their Family Members

Cancer in Young Adults

Approximately 70,000 young adults in the United States are diagnosed with cancer annually (NCI, 2014b). Not only has cancer remained young adults’ leading cause of disease-related death (NCI, 2014b), but this population has also long demonstrated less improvement in survival rates than pediatric and older adult patients (Albritton, Barr, & Bleyer, 2009). The lack of change in YACS mortality rates and other negative disease-related outcomes led NCI to designate YACSs as a distinct group that experiences unique challenges during and following primary treatment (AYAOPRG, 2006). Some of these complications include comparatively limited and restricted access to health care and insurance coverage, poorer representation in clinical trials, lower awareness of prevention and early detection, and lengthier delays in diagnosis partially due to health-related invulnerability (AYAOPRG, 2006; Bath, 2012). In addition, biophysical challenges such as body disfigurement, changes in body function, and loss of fertility are particularly salient for YACSs because their identities are often less solidified at this life stage (Bleyer, 2007; Zebrack & Isaacson, 2012).

Psychosocial, quality of life, and communication challenges also generate unique frustration for YACSs, who often struggle to initiate new and manage existing relationships during and after treatment (Kent et al., 2012; Zebrack et al., 2012). Partially because finding and maintaining effective social support is difficult for this age group (Iannarino, Scott, & Shaunfield, 2017), YACSs often feel more stress, isolation, and uncertainty about making medical decisions, seek less care, and adhere less often to treatment than pediatric and older adult patients (AYAOPRG, 2006; Zebrack, Chesler, & Kaplan, 2010). They are also less likely than other age groups to access targeted information and professional, recreational, complementary/alternative, and online health and support services during and after treatment (Thewes, Butow, Girgis, & Pendlebury, 2004; Zebrack et al., 2012), partially because medical providers rarely refer YACSs to these resources (Soliman & Agresta, 2008). In fact, many providers are not trained to deal specifically with YACS-specific issues (Bleyer, 2007). As a result, YACSs often find themselves in “no man’s land” between pediatric and adult oncology (AYAOPRG, 2006), where their concerns about recurrence, late effects, and fertility are commonly unmet (Shay, Parsons, & Vernon, 2017).

In addition, due to the interdependent nature of coping with cancer, YACSs’ family members (i.e., parents, siblings, romantic partners) are often faced with new support responsibilities that can alter their relationships, identities, goals, responsibilities, and health (Krieger et al., 2015; Miller, 2012). Close supporters of cancer patients have reported higher posttraumatic stress symptoms than YACSs (Juth, Silver, & Sender, 2015) and high anxiety and supportive care needs for up to 11 years after treatment completion (Hodgkinson et al., 2007). In addition, YACSs’ romantic partners are often inexperienced as support providers and report uncertainty, distress, and frustration as they deal with intense support provision at an unexpected point in their relationship (Baus, Dysart-Gale, & Haven, 2005; Carlson, Bultz, Speca, & St. Pierre, 2000; Zebrack & Isaacson, 2012). Despite this, YACSs’ closest supporters are often overlooked as potentially needing unique resources to help them adjust to their own cancer-related experience (AYAOPRG, 2006).

The unique challenges YACSs and their families experience during and after primary treatment indicate a need for increased attention to their psychosocial and health concerns. However, it is also clear that the majority of research on YACSs has concentrated on “the monolithic assumption of pathology or long-term deficits in functioning,” which can “obscure our view of the full range of outcomes and the complexity of cancer survivorship” (Parry & Chesler, 2005, p. 1056). In other words, there could be important knowledge gained by understanding how cancer can potentially serve as a stimulus for positive change for YACSs and their families, especially as it relates to health and wellness following primary treatment for their illness.

Cancer as a Transformational Experience

For decades, a growing number of scholars have studied illness as a potentially transformative experience for patients. Transformation is a tangible change expressed by an individual regarding their internal (e.g., psychological) and external (e.g., behavioral, social) adjustment to some sort of catalyst; in this case, illness transformation represents the changes experienced in a postillness life (Park, Lechner, Antoni, & Stanton, 2009; Paterson, Thorne, Crawford, & Tarko, 1999; Vachon, 2001). Often defined more in terms of outcomes than process, transformation represents how individuals retrospectively restructure the illness experience and themselves in positive ways (Paterson et al., 1999). A number of related terms appear in the literature to represent this phenomenon, including posttraumatic growth (Hefferon, Grealy, & Mutrie, 2009), turning points (Vachon, 2001), self-transcendence (Reed, 2014), life-transforming changes (Skeath et al., 2013), and existential changes (Halldórsdóttir & Hamrin, 1996). Transformation provides a strong theoretical foundation for moving beyond the “monolithic assumption” of focusing research on negative outcomes of disease and sensitizes scholars and practitioners to the potentially positive metamorphosis experienced by sick individuals.

The nature of illness transformations is often unique to the population under study (e.g., acute vs. chronic disease). For example, the experience of liver transplantation triggers a specific five-step process that ends with feeling well again and wanting to reciprocate support to others (Wainwright, 1995). Conversely, HIV/AIDS patients discussed illness transformation as a long-term restructuring of life that occurs after diagnosis and includes coping, normalizing, and taking care of oneself to promote long-term survival (Barroso, 1997).

Research has also examined cancer illness transformations as they evolve across the care continuum. For example, the transformation experienced by breast cancer patients upon recent diagnosis, at recurrence, and in advanced stages is commonly rooted in their internal acquisition of strength, optimism, and a desire to rise above the struggles of their illness; an increased tendency to seek and provide social support; and their development of a stronger social life to provide meaning and focus beyond cancer (Coward, 1990; Coward & Kahn, 2005 Kenne Sarenmalm, Thorén-Jönsson, Gaston-Johansson, & Öhlén, 2009). However, studies that analyze illness transformations across the care continuum (i.e., from diagnosis to posttreatment) and in broader cancer contexts (e.g., not site-specific) have reported differences in patients’ perspectives and growth at various stages of the cancer continuum (Mulkins & Verhoef, 2004; O’Connor, Wicker, & Germino, 1990; Taylor, Richardson, & Cowley, 2010; Towsley, Beck, & Watkins, 2007). One significant finding involves cancer patients’ tendency to report more unmet needs they have experienced more recently in diagnosis (Moadel et al., 1999). Although newly diagnosed patients often struggle to process how cancer will transform their lives, most survivors in the posttreatment stage of illness demonstrate that they have had more time to reflect on the cancer experience. Park and Folkman (1997) distinguished two types of meaning-making from life events: situational meaning, which is specific to the circumstances of an individual interacting with their environment and, therefore, limited in its temporality, and global meaning, which is based on an accumulation of life experiences and more broadly encompasses a person’s beliefs, expectations, and goals about life. This notion is supported by Parry and Chesler (2005) who noted that “survivors’ global assessments of the effects of cancer on their lives. . . suggest[s] that time since diagnosis plays a role in this process” (p. 1066). Given this literature, we contend that studying posttreatment cancer survivors (i.e., those farther away in time from their diagnosis) could better capture the global meaning that might be derived from experiencing an illness transformation.

Research that has focused on more long-term, posttreatment transformations has been rooted primarily in the relatively positive experience of pediatric oncology survivors (Duran, 2013; Phillips & Jones, 2014; Zebrack et al., 2012). Posttreatment childhood cancer survivors report experiencing psychosocial thriving and increased psychological maturity, an enhanced sense of compassion for others, discovery of personal strengths, and new values and priorities in life (Parry & Chesler, 2005). One research team coined the illness transformation experienced by pediatric cancer patients as “cancer’s positive flip side,” and they argued that recognizing the potentially positive effects of pediatric cancer can help family and health care providers better support survivors as they reintegrate into life following treatment completion (Gianinazzi et al., 2016, p. 195). Although YACSs also experience cancer relatively early in life, their experience often differs from pediatric survivors due to their life stage, normative goals and responsibilities, less perceived available social support, and other factors (AYAOPRG, 2006). As a result, there is a need to better understand how YACSs discuss posttreatment transformations and whether they also experience such positive long-term transformations, especially as they relate to health and well-being.

Transformation in Family Members

Illness is often a communal experience, especially in serious cases such as cancer. Just as a patient might go through a transformation because of their illness, the people supporting them can also experience a transformation. The transformation experienced by family members, particularly spouses, has been well studied in cardiac disease (Dalteg, Benzein, Fridlund, & Malm, 2011; Eriksson, Asplund, & Svedlund, 2009, 2010; Panagopoulou, Triantafyllou, Mitziori, & Benos, 2009). For example, couples described how the shared experience of an acute cardiac event led them to change their approach to healthy living, better understand the importance of living a less stressful life, and improve their communication with one another (Mahrer-Imhof, Hoffmann, & Froelicher, 2007).

In the cancer realm, the role of close supporters, such as family members, in cancer survivorship is well studied (Krieger et al., 2015; Miller, 2012). However, this area of research lacks insight into how close supporters might experience positive transformation due to their involvement in their loved one’s cancer care. As cited above, much of the work in patient illness transformation has revealed that patients describe the social aspects of disease and healing as a large part of their transformation, suggesting that there is a social aspect to illness transformations in the cancer realm. As such, examining how YACSs’ family members experience potential beneficial shifts in mental, physical, and social well-being as a result of caring for someone with cancer can provide additional insight into the important role these close supporters play and better illuminate the nature of illness transformations for YACSs.

Current Study

As noted by Vachon (2001), “the meaning of cancer [for each individual] reflects physical, social, and intrapsychic changes associated with the illness” (p. 280). Like any illness, cancer can serve as a transformational experience for some survivors. Missing from the literature, however, is a focus on how YACSs in the posttreatment phase of their illness can perceive cancer as a potentially transformative experience, as well as how their close supporters may experience a similar change in their lives. Given the previously discussed struggles experienced by YACSs including higher mortality rates and lack of appropriate resources to assist them in survivorship, examining how YACSs and those who support them might experience a long-term, beneficial shift in attitudes, beliefs, and behaviors following the completion of primary treatment is needed and could help inform strategies that could benefit other YACSs. Especially of interest would be an understanding of the positive transformations around mental, physical, and social well-being, given the previously discussed poor outcomes in these areas for many YACSs, and given that these young adults may still have many quality life years ahead of them (i.e., these shifts could benefit them for many decades). Thus, the purpose of this study is to identify the salient issues related to illness transformations for YACSs and their closer supporters. Although previous work has focused on illness transformations, including those reported by other cancer survivor groups, the lack of illness transformation research in the context of YACSs justifies the need for a qualitative research approach that seeks to capture the emic perspective of this unique group. As such, this study sought to answer the following research question:

Participants

We conducted individual, face-to-face interviews with 30 YACSs (i.e., men and women currently between the ages of 18 years and 39 years who were previously diagnosed with cancer and had completed primary treatment) and 21 family members who YACS participants considered a close supporter at the time of their diagnosis or during primary treatment. Nearly one third of the YACS participants (n = 9) did not have a family member available during our recruitment period (e.g., their schedule or location did not allow for a face-to-face interview). Therefore, our final sample (N = 51) included 21 YACS-family member pairs and nine additional YACSs. See Table 1 for participant demographics.

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Table 1.

Participant Demographics.

	YACS (n = 30)	Family Member (n = 21)
Average age at diagnosis	24.8 years (range = 18–36 years)	31.9 years (range = 17–59 years)
Gender	16 females (53%) 14 males (47%)	17 females (81%) 4 males (19%)
YACS initial diagnosis	Leukemia (n = 7), head and neck (n = 6), testicular (n = 5), breast (n = 4), lymphoma (n = 4), liver (n = 1), cervical (n = 1), mediastinal germ cell (n = 1), ovarian/uterine (n = 1)
At interview, average time since primary treatment completion	4 years (range = 1 week–13 years)
Family member relationship to YACS	Spouse (n = 8), mother (n = 5), sibling (n = 5), romantic partner (n = 2), daughter (n = 1)
Race	Caucasian (n = 43), Multiracial (n = 3), Hispanic (n = 2), African American (n = 2), Asian (n = 1)

Note. YACS = young adult cancer survivors.

Following institutional review board approval, Iannarino engaged in convenience and volunteer sampling by recruiting YACSs from a variety of sources: psychosocial oncology services at nonprofit organizations and university hospitals, cancer support organizations’ social media pages, fliers at a large southeastern United States university and in the surrounding community, and in-person announcements at YACS support groups. Interested participants contacted Iannarino to inquire about participation. For study inclusion, YACSs needed to self-identify as receiving a cancer diagnosis, completing primary treatment, and currently being between the ages of 18 years and 39 years. Additional YACSs were recruited through snowball sampling by asking participants for referrals, whom Iannarino then contacted. Family members were also recruited through snowball sampling by asking YACS participants to refer family member they considered a close supporter at diagnosis or during primary treatment.

Procedure

All interviews were conducted face-to-face with the second author, Iannarino, at a time and place convenient for the participant. Participants provided written informed consent, completed a short demographics questionnaire, and engaged in a one-on-one semistructured interview (Lindlof & Taylor, 2011). Performing separate interviews with YACSs and family members allowed participants to more freely discuss sensitive information without the social desirability or impression management effects often inherent when interviewing pairs together (Goldsmith, Lindholm, & Bute, 2006). It also enabled the researchers to rely on individual accounts to construct a joint picture of pairs’ common experience (Eisikovits & Koren, 2010). Consistent with previous work in illness transformation (Mahrer-Imhof et al., 2007; Park et al., 2009; Paterson et al., 1999; Vachon, 2001; Wainwright, 1995), our interview questions were designed to elicit examples and evaluations of how YACSs and their family perceived changes in their mental, physical, and social health and well-being following primary treatment completion. Some of these questions included “Are there any ways that you felt like a different person following your cancer experience?” “How has this experience changed the way you think about and take care of your health now?” and “How has your approach toward preventative health changed since your/your loved one’s treatment?” In keeping with the guiding framework of illness transformation, we were specifically looking for participants to describe any natural or spontaneous positive transformations they realized happening in their lives as a result of going through this illness, and we did not focus on changes that occurred forcibly due to the physical effects of treatment (e.g., late effects, surgical outcomes). Interviews lasted an average of 72 minutes, and each participant was given a US$15 gift card upon completion.

Data Analysis

Both authors engaged in thematic analysis of the data (Braun & Clarke, 2006). We familiarized ourselves with the interview transcripts by reading each YACS participant’s responses sequentially with their family member dyadic partner when applicable. Both authors then engaged in open coding to identify and label any component that related to participants’ expressions of transformations (e.g., expressions where participants used words such as “more,” “less,” “different,” “not the same,” “then/now,” “change,” etc.) related to mental, physical, or social health and well-being. In axial coding, both authors met to categorize the emergent data into themes according to their representation of a priori concepts gained from the review of illness transformation literature while also allowing new insights to emerge. Thus, we grouped data into themes that described the illness transformations YACSs and their family members experienced related to mental, physical, and social health and well-being. Through detailed conversation across data analysis, both authors refined the specific descriptive codes within each theme, discussed any discrepancies, and reached consensus regarding the consistency of the themes and codes. No new categories emerged after completing axial coding, which suggests that theoretical saturation was achieved (Strauss & Corbin, 1998). To thickly describe participants’ experiences, both authors integrated categories in selective coding to develop a stand-alone narrative reflected in the outline for the “Findings” section (Polkinghorne, 1995, p. 19). Head returned to the data once more to gather exemplars and select excerpts to include and composed the final report of the findings.

A Change in Perspective

First, YACSs and their family reported various changes in their perceptions of health and wellness, such as increased motivation, conscientiousness, maturation, and disease susceptibility and mortality following the completion of primary treatment. One YACS expressed that her health “is much more of a priority”; whereas another YACS said “I have more motivation for being healthy, just living a general healthy lifestyle. Before I got sick, I was athletic. I was fit. I ate relatively well. But there’s more emphasis on that now.” Family members also observed this shift, with one noting that her boyfriend’s (now husband’s) cancer “changed our outlook on how we want to live overall, like, ‘Let’s try to be healthier where we can. Why take an extra risk when we don’t need to?’” Another family member echoed this motivation to reassess health risks: “Everybody’s probably predisposed to one thing or another, but to actively participate in something you know will do that to you is just plain asinine.” Not only participants were more motivated to focus on healthy living, but also they were also more conscientious of their personal wellness. Participants explained that it was important for them to feel more in tune with their bodies. For example, a YACS noted she’s now better at “listening to how I feel or how my body feels,” and a family member explained, “You have to know yourself. You have to know when something doesn’t seem right, or feel right, or look right.”

This shift toward motivation and conscientiousness also revealed that YACSs and family often experienced what is perhaps accelerated maturation compared with their peers. One YACS revealed that both she and her fiancé (now husband) underwent “big life changes. I totally changed my diet. I quit eating meat. [My husband] quit drinking. So, both of us have gotten a lot healthier and I think we’ve grown up a lot.” Another YACS related his increased health awareness to a sense of having grown up:

Before my diagnosis, I was 17 and hadn’t learned. Now that I’m older, some of [my awareness] might come from maturity. I was not as conscious [about my health] before. I try to be very conscious about all that now. In all aspects, I try to be a little different.

However, participants also reported a change in perspective regarding disease susceptibility, likely because enduring such a serious disease so early in life forced YACSs and family members to face their mortality earlier than other young adults. For example, a family member stated, “It definitely changed my view on everything. Never too young and you’re not invincible.” Another family member noted, “It’s always in the back of your mind,” and one YACS confessed, “It’s kind of a joke in our house where I’ll be like, ‘Oh no, I have a headache,’ and [my husband] will be like, ‘You don’t have brain cancer.’ With everything now, I’m like, ‘Oh my God.’” Although the cancer experience led to transformations that increased YACSs’ and family members’ motivation, conscientiousness, and maturation related to health and wellness, participants also reported shifts in perspectives related to a newfound sense of general and cancer-related vulnerability.

A Change in Behavior

Aligning with their psychological shift in perspectives regarding health and prevention, participants reported a second type of transformation involving changes in specific health behaviors following treatment. These included changes in eating (e.g., organic, less meat), exercise (e.g., more frequent, different types), and being more proactive about preventive health and health care (e.g., more frequent doctors’ visits and screenings).

Participants’ main behavioral change involved food and diet. Because eating is usually a communal experience, many of these changes were couched in terms of how both YACSs and their family transformed their dietary habits. Most of these changes involved a reported incorporation of organic and whole foods and a reduction of foods with artificial ingredients. Many participants noted that this transformation in dietary behavior was related to YACSs’ desire to limit the amount of toxins and hormones they ingested following intense chemotherapy and other pharmaceutical regimens. One YACS said, “We’ve really tried to eliminate a lot of things that have chemicals in them, processed foods and things like that, and try to eat more natural foods.” Family members also participated in this change, like one who observed, “We have a much different diet now, especially as far as hormone-driven things. We don’t drink dairy milk anymore and we hardly eat meat.” Moving toward a strict or mostly vegetarian or vegan diet was also a common theme. A YACS clarified that her decision to eat vegan is “not gonna prevent leukemia,” but she felt she “should be healthier, especially because I’ve had so much chemo and toxins and stuff in my body.” In addition, many participants noted that they shifted away from eating unhealthy foods outside of the home (e.g., fast food) to buying food from more conscientious and local businesses, as one YACS explained:

My wife and I get our produce delivered from a place just a couple miles up the road . . .There’s a farm east of town that delivers locally-raised, organic, and high-quality butchered livestock. So, we’re moving in that direction with better quality, healthier food.

Changes in diet were also related to a shift away from the partying lifestyle common for some young adults, which often involved binge drinking and smoking. A YACS noted:

I wasn’t a heavy drinker, but I used to drink around my friends prior to all this. I don’t really do that much anymore. . . I also try pretty hard not to be around anyone who smokes anymore. After chemo, you feel like you’ve just had some of the worst toxins ever made put into your veins. You don’t really wanna go drinking alcohol or being around smoke or anything.

Beyond diet, participants also described the changes they made in physical activity, particularly, regarding differences in frequency, intensity, and type. One YACS said, “Even if you don’t feel like it, you go work out”; whereas another explained that he “made a very concerted effort to get back into shape after going through treatment.” Several participants noted that they began training for races after they or their loved one completed primary treatment. A family member recalled, “After [my YACS mother’s] treatments finished up, she started training for 5Ks. She just changed, like did all these life-altering things that made her such a better, stronger person.” YACSs reported that they focused on exercise and building physical strength following treatment in an attempt to return to the physical condition they maintained before diagnosis. Beyond that, one YACS admitted that he did not feel he had truly recovered from cancer until his conditioning for rock climbing surpassed his capacity before treatment:

I’m way more hardcore. Instead of just doing stuff for fun, I force myself to go hangboard more to get my finger strength back. I had to prove to myself that I was better, so I pushed a little harder and got out of my chair every hour at work to do some sit-ups and pushups, like, “No, I’m gonna be better. I’ve gotta make myself better.”

Finally, participants explained how the cancer experience changed their approach to health care and preventive health. This typically involved taking health and sickness more seriously by making earlier and more frequent appointments with medical providers. One YACS noted that she now receives more regular checkups: “I’m definitely very vigilant. . . Things in the past that I wouldn’t have thought much of, now I’m like, ‘Oop, better go to the doctor.’ Just better to be safe than sorry, you know?” Other YACSs also reported increased vigilance, with one noting, “When somethin’ hurts, I go to the doctor. If it’s somethin’ I don’t know about, I find somebody who does.” This shift extended to family members as well, with one explaining:

I pay more attention to my health. I go to regular doctor visits and, especially being a girl, since my mom has breast cancer, I do what is necessary to make sure I’m healthy and that the same thing doesn’t happen to me.

This shift to higher vigilance and an earlier and increased use of health care services was often related to a perception that the original cancer should have been caught sooner. One family member revealed that she made a doctor’s appointment for herself immediately after her younger sister was diagnosed:

I was like, “I’m gonna get my cholesterol checked, I’m getting all this stuff checked.” If I’m not feeling well or if [YACS] is not feeling well, I’m like, “Well, do you think we should go to the doctor? What are you thinking?” I’m definitely much more cautious than I was, because before I was just like, “Oh, you’re fine.” And she wasn’t even close to fine.

Increased health care utilization also extended to preventive health, with participants describing how they now took advantage of many preventive health actions. These included self-exams (e.g., “Even to this day, I’ll check myself”), vaccination (“[I became] a big pro-vaccer”), cancer screenings (e.g., “Colonoscopy? Go ahead, sign me up. Whatever is the earliest suggested age for getting scanned myself, you better believe I’ll be the first one in line”), and sunscreen use (e.g., “I wear sunscreen all the time now”).

The cancer experience served as a catalyst for behavior change for both YACSs and their family members to eat better, exercise more, and engage more proactively with the health care system. In fact, most participants did not change just one behavior, but many. One YACS noted, “Especially now, I, of course, wear sunscreen, I eat healthy, I work out, I don’t drink. . . as much as I used to. So, I’m healthier.”

A Change in Communication

The third type of transformation involved changes in communication about health and wellness within families, with health care providers, and with others in the community. First, participants described a change in their relational family dynamic and how they talked about health and disease following treatment completion. This meant more open communication about disease risk (e.g., “Did you get that spot checked out?”), but also a greater openness in how they could communally care for one another and build stronger relationships. One family member said that she and her boyfriend (now husband) “talk a lot more. We’re a lot closer. I think we appreciate each other and life and things a lot more. It also brought us closer to our families, and me and his family, and he and mine.” Another family member described the change in her family’s communication about health and wellness following her YACS mother’s breast cancer treatment:

The women in my family are closer. They were really concerned it could be genetic, like, “What if I get breast cancer?” So, it’s something us girls can talk about more personally. . . It’s just been something they haven’t tried to hide from each other. My mom told all her sisters [about her diagnosis] out of concern to make sure they were getting checked. So now if we have a girls’ shopping trip, that’s something they all talk about.

Another communicative change expressed by participants was how they interacted with health care providers. In addition to going to the doctor more, participants also described how the cancer experience encouraged them to be more proactive and assertive in their communication (e.g., speaking up more) during these health care interactions. A family member explained that during her trips to the doctor, she is no longer “embarrassed to point out if there’s something I feel uncomfortable to talk about. . . I’m no longer intimidated by having to say things out loud.” One YACS described this communicative shift through her newfound ability to advocate for gaining a “full picture” from doctors:

The doctor’s not leaving the room until I have all my questions answered. . . I bring a notebook, I take notes, and I’m very much like, “Can I quote you on that?” I have a very big hand in my own care, because the only one who can take care of me really is me. So, I make sure to have all of the information. . . And I don’t go to any doctor who rushes me out of the room.

For family members, this shift toward more assertive communication was sometimes attributed to serving as primary caregiver during the YACS’s cancer experience. One family member recalled how supporting her son during his testicular cancer treatment changed how she approaches her own health care:

You have to be your own advocate. Especially when he was first diagnosed, there are so many things, and there are so many different doctors, and they all have different opinions about what your care should be. So, I think you have to be a real advocate for yourself to know, “This doesn’t feel right” or, “No, this isn’t the way we need to do it. Let’s do it this way” or “Can we do it this way?” At least pose the question. I think you have to take care of yourself first.

Perhaps the largest communicative transformation resulting from the cancer experience was that it opened up a new space and opportunity for communication about cancer and wellness through public advocacy. Many YACSs felt that they had acquired a great deal of information about cancer during their own treatment, and they sought opportunities in survivorship to share it. A YACS explained that her cancer experience informed her desire to “push people to care for themselves better than they do now”:

It even pushed me to the point where, for my sorority and stuff, when we work with places like the American Cancer Society, I’m all in. I do everything with it. I know it’s kinda biased, but I just went through it, you know?

Another YACS used his experience of neglecting to tell a health care practitioner about the growing tumors in his testicle and abdomen to inform his advocacy work for other adolescents and young adults:

We’ve got to encourage people to get in. The day I found the spot on my nut, the worst that would have happened was I would have lost a nut and maybe gotten a little bit of radiation. Never would have done chemo. But I didn’t have somebody there to relate to, to tell me about it. For the first few years [after treatment], I ended up going around to all the high schools and givin’ cancer awareness speeches. And I said, “If there was anybody that had come to me that was young, that told their story, that I could somewhat relate to, I would have remembered that and been like, ‘Crap, you better go get checked.’” And so I just made it a point, saying, “Hey, if I get an opportunity to tell somebody about what I went through, if it helps one person, I pulled it off.”

Another aspect of advocacy expressed by some participants was raising awareness for healthy individuals regarding their potential to help cancer patients. One YACS described how encouraging others to become a bone marrow donor was his main goal in doing advocacy work:

As a Black man, I didn’t have anybody on the donor list. In my community, they don’t know about bone marrow or being a donor. Some people do, but it’s not that frequent. I’m quite sure there’s somebody in this world who has the same bone marrow match as me, but the awareness isn’t out there. So, I speak about it, especially when I get around other black people.

The communicative shifts for YACSs and family members not only demonstrated important relational shifts and more open communication about health within the family, but they also resulted in more open and assertive communication with health care providers. Beyond these changes in their interpersonal networks, the shift to more external advocacy communication represents a particularly unique shift for these individuals.

No Change

One intriguing aspect of studying illness transformation involves acknowledging that some participants do not experience transformation, or that they experience a change in some areas but not others. Throughout data analysis, both authors paid close attention to participants who expressed no change in perspective, behavior, or communication postcancer. A small but vocal group of participants in our sample felt they had experienced no transformation in some or all these areas. Whether they described a partial transformation or no transformation, these participants often expressed a fatalistic view in describing why they did not experience changes as a result of cancer. One YACS explained, “I feel if [cancer is] genetic, then it’s genetic. So, if I’m a carrier, it’s not gonna matter if I eat good or not.” This YACS is indicating that her breast cancer experience did not lead to any sort of transformation for her eating behaviors; however, she was quoted earlier in this piece as experiencing a shift in how she is much more vigilant in performing self-breast exams. Another YACS explained that he had focused on wellness long before his cancer experience, which made his diagnosis even harder to understand:

It wasn’t like, “Yeah, I actually used to smoke, now I quit.” I’ve never smoked. I’ve never sat down and eaten a whole bag of Doritos or something. So that’s kind of the bizarre element to this.

A family member also explained her family’s difficulty in making sense of the random nature of her daughter’s thyroid cancer diagnosis: “[My daughter] was like, ‘Why me?’ And even her sister was like, ‘Why her?’ Her sister is the one that doesn’t eat well.”

Some participants did recognize that other YACSs might experience a transformation posttreatment, and they articulated how they viewed their experiences differently than those individuals. One YACS commented, “I kind of had the opposite response with [my leukemia] because there’s nothing anybody does that causes it. It’s just a mutation. It just happens.” Participants’ difficulty in making sense of their experience and their somewhat fatalistic view toward cancer could be one of the reasons these individuals did not experience any or only partial transformations. They felt they did nothing “wrong” to get cancer in the first place or that their diagnosis was just a random occurrence, so any additional preventive behaviors or more attention to health and wellness in their postcancer lives was unnecessary in their minds.

Implications and Future Directions

First, while our study reveals a number of positive mental, behavioral, and communicative shifts related to health and wellness in the posttreatment lives of YACSs, our findings conflict with other research on YACSs that reveal relatively slow rates of improvement in variables such as health-related quality of life and mental well-being following treatment (AYAOPRG, 2006; Husson et al., 2017a; Kent et al., 2012; Zebrack & Isaacson, 2012). Because of these previous studies, scholars have called for the development of clinical interventions and formal support services that could assist YACSs in demonstrating increased posttraumatic growth and other outcomes that can facilitate better adjustment to their postcancer lives (Husson et al., 2017a, 2017b). However, the current study’s findings reveal that YACSs and their family members rarely mention the role of health care providers in relation to their positive transformative experience. Although this observation is certainly worthy of further study (e.g., are health care providers absent from YACSs’ experience of illness transformation?), it also draws attention to the potential for more noticeable involvement by practitioners to potentially assist YACSs and their family members in experiencing positive transformations. This notion is elucidated by Mulkins and Verhoef (2004) in their work with adult cancer outpatients:

Although we may not be able to create transformative experiences for patients, we may be able to establish and maintain conditions enabling transformation. By having individuals describe their experiences after their cancer diagnoses and tell their respective stories, we can begin to understand what is meaningful to each person, to provide individual guidance, and to offer appropriate care strategies. (p. 231, italics added)

Because current provider training and education programs do not sufficiently address YACS-specific issues, providers often lack an adequate understanding of YACSs’ psychosocial and communication needs. They also rarely offer YACSs specialized care guidelines or refer them to age-appropriate psychosocial services or programs, such as Stupid Cancer and First Descents in the United States, Teenage Cancer Trust and Teenagers and Young Adults with Cancer in the United Kingdom, or Youth Cancer Europe, which hosts support networks in 19 countries, that could potentially offer peer support (AYAOPRG, 2006; Soliman & Agresta, 2008). By recognizing what is meaningful to their patients, identifying their specific needs, and advocating for and collaborating with age-specific community services, clinicians can play an important role in improving YACSs’ access to relevant care and age-appropriate support networks, which can help promulgate positive illness transformations for more patients (Street, Makoul, Arora, & Epstein, 2009). It could be as simple as starting with questions about what potentially positive changes have occurred in YACSs’ lives as a result of cancer. Participants in our study, while certainly experiencing many negative issues related to their cancer, were able to explain the positive transformations they experienced because we asked specifically about that.

Future work should focus on health care providers’ roles in connecting YACSs with appropriate services and addressing their unique needs while also helping them to recognize the positive transformations each patient might be going through. In addition, given that cancer survivors in the posttreatment phase may see their clinicians less frequently (Zebrack et al., 2012), support groups and community organizations (e.g., local American Cancer Society offices) could focus on developing more interventions aimed at YACSs. Because the cancer experience served as a powerful motivating force for behavior change, beyond what a targeted intervention might be able to accomplish, our findings also suggest that interventions might not be needed for some in this population.

Second, future work should seek to better understand why some individuals (i.e., the majority of YACSs in our sample) do experience a positive illness transformation, but others do not (or only express transformation in some areas but not others). The few YACSs in our study who reported no transformation often took a fatalistic view of their cancer experience and did not feel the motivation or inspiration felt by the other patients who did describe a transformation. This was sometimes tempered by the type or nature of the cancer (e.g., leukemia) they experienced. Some participants chose to view cancer as a “genetic fluke” and found no reason or motivation to change how they were living after treatment completion. Beyond this fatalistic view, it is also possible that some participants just did not experience illness transformation, and that “while not denying the experience, after the initial treatments they tend[ed] to return to their normal life, minimizing the experience of the disease” (Vachon, 2001, p. 281). Our sample is too limited to draw any conclusions about what might predict illness transformations for some patients but not others in the YACS population; hence, research with larger YACS samples, particularly those that sample purposively with regard to cancer site, type of treatment, stage of cancer, and even cases where there is a recurrence, is needed. In any case, it is clear that psychosocial support opportunities intended for this population could focus on helping all YACSs recognize that cancer early in life can be an opportunity to adopt (or continue to pursue) a focus on maintaining mental, physical, and social well-being.

Future work should also consider the sustainability of illness transformations and whether providers or support resources play a mediating role in sustaining a positive transformation. One limitation of the current study is that there was considerable variation in our sample’s time since completion of primary treatment (i.e., ranging from 1 week to 13 years). This exploratory study did not examine how time since completion of primary treatment might influence transformative experiences. In addition, participants were, on average, only 4 years past the completion of primary treatment. It is unknown whether the salience of a YACS’s illness transformation grows, ebbs and flows, or even diminishes over time. Future work should engage in more longitudinal tracking of this phenomenon, including attention to whether illness transformation follows a set of steps over predictable periods of time (e.g., do most patients feel some sort of positive transformation by the completion of primary treatment? At 6 months past completion of primary treatment? Or a year?).

At the same time, illness transformations should also be studied in tandem with concepts such as resilience (Rosenberg, Yi-Frazier, Wharton, Gordon, & Jones, 2014) to determine whether resilience and illness transformations are sequential steps (i.e., if resilience emerges before transformations or vice versa). For example, Haase and colleagues’ resilience in illness model sheds light on the factors that can help adolescents and young adults with cancer achieve positive adjustment to chronic illness (Haase, Kintner, Monahan, & Robb, 2014; Haase et al., 2017). Resilience outcomes include managing illness-related stressors, feeling a sense of accomplishment related to managing the illness, and, consistent with this study, experiencing motivation to help and inspire others. Our findings again suggest the need for more rigorous measurement and longitudinal research to further conceptual development for YACSs and family in this context.

Third, YACSs can serve as important advocates for cancer prevention and healthy living through the use of their own stories. Participants in this study appeared to be personally motivated to engage in this type of advocacy work by sharing their experience to bring awareness to cancer topics and encourage others to engage in healthy, preventive health behaviors. These personal stories could be particularly persuasive at influencing others’ behaviors (Hinyard & Kreuter, 2007). The use of narratives in cancer care and prevention is promising because “people communicate with one another and learn about the world around them largely through stories,” and because “it is a comfortable way of giving and receiving information” (Kreuter et al., 2007, p. 222). In experimental studies of health promotion messages for breast, lung, skin, and testicular cancer prevention, the use of narrative messages rivaled or even surpassed the effect of other message types (e.g., statistical, advocacy) on outcomes such as perceived risk and intention to engage in a preventive behavior (Dunlop, Wakefield, & Kashima, 2010; Greene & Brinn, 2003; Kreuter et al., 2010; Lemal & Van den Bulck, 2010; McQueen, Kreuter, Kalesan, & Alcaraz, 2011). In addition, using real-life personal, firsthand stories was twice as likely to have an effect than third-person narratives (Winterbottom, Bekker, Conner, & Mooney, 2008), which suggests that individuals who can tell their own stories might be seen as particularly credible and believable. In situations where it is appropriate, researchers and practitioners working in health promotion, particularly in cancer prevention contexts, could find it beneficial to partner with YACSs to increase the impact of their messaging.

Fourth, this study highlights how the cancer experience can be transformative not only for YACSs, but also for the close family members who went through the experience with them. This suggests that the transformational experience of illness, particularly cancer, should perhaps be further defined to reflect that it is a social experience. However, this is contingent on the fact that some YACSs might not have close supporters. In the volunteer convenience sample used for this study, we explicitly asked if the YACS participant could identify a close supporter that we could interview, and only 70% of YACS participants were able to refer one to us. Many YACSs receive their diagnosis and go through treatment during a period in their life known as “emerging adulthood” that is full of both old (e.g., parents) and new (e.g., friends at college or work, romantic partners) social connections (Arnett, 2000). Given this potentially tumultuous time in terms of social connections, many YACSs lack the stable, built-in social network that others enjoy (AYAOPRG, 2006). Thus, future research on illness transformations, especially in the YACS population, needs to not only further investigate the characteristics of this shared illness transformation when it occurs, but to also explicitly address how the presence and role of family members and other close supporters within the YACS’s wider formal and informal social networks could be especially important in cultivating YACSs’ own individual illness transformations. Future researchers should further investigate how health care professionals can help YACSs maintain, establish, and strengthen their relationships with potential supporters, particularly, in cases where YACSs’ existing social networks appear sparse or limited, to provide more potential for positive transformations among both parties (Olsen & Harder, 2011).