“It Made Me the Person I Am Today…”: Survivors of Childhood,Adolescent,and Young Adult Cancer Reflect on Their Experiences

Abstract

Purpose:

As survival rates of childhood, adolescent, and young adult (YA) cancers improve, there is a growing population of YA cancer survivors who can provide insight into the lived experience of cancer. The goal of this study was to improve understanding of the cancer experience through interviews with YA-aged survivors.

Methods:

A convenience sample of survivors (age ≥18; remission ≥5 years) was recruited from an urban pediatric hospital. Participants responded to demographic questions, open-ended questions about cancer experience, and optional verbal interview. Responses to questions (written and verbal) were transcribed and coded using thematic analysis to identify common themes.

Results:

Participants were 18 cancer survivors (M age = 22.17 ± 3.96, 50% male, 33.3% Latino/Hispanic). The main themes reported were as follows: (1) importance of mind-set (reported by 94% of participants); (2) positive transformation (61%); (3) importance of support from medical team (61%); (4) importance of social support (56%); and (5) burden of cancer (44%).

Conclusions:

Themes of resilience and optimism were pervasive throughout responses. YA-aged survivors were both proponents of adapting a positive mind-set when undergoing treatment, and appeared to maintain this positive mind-set into survivorship by describing cancer as a transformative experience. Cognition, positive change, and social support, are all concepts that could be addressed through targeted screenings and interventions. Fostering a positive lens may help with overall adjustment and mood during treatment, and be protective for physical and mental health.

Review of Literature

Advancements in pediatric cancer diagnosis and treatment have led to improved survival rates and a growing population of childhood (age 0–14) and adolescent and young adult (AYA) (age 15–39) survivors.^1–3 These survivors not only have unique medical and psychological needs, but they may also improve the medical community's understanding of having cancer during a formative period of life. Improved understanding of this experience could inform future medical and psychological assessment and intervention.

Challenges associated with having had cancer, specifically late effects, are well documented and range from physiological to psychological.^4–8 Approximately 70%–80% of childhood cancer survivors have at least one late effect with up to 80% of these late effects becoming significant concerns by the age 45.^9,10 Yet, survivors of childhood cancer have also reported that cancer positively impacted their confidence and goals,^11,12 and led to greater psychological maturity, increased empathy, and reprioritization of values.¹³

The juxtaposition of both late effects and positive growth suggests that there may be factors at play that influence the manner in which individuals interpret their cancer experience, and that this is a field in need of continued exploration. Qualitative data can provide insight into experiences not captured by standardized measures, and may be helpful in developing interventions.¹⁴ Current patients with cancer may appreciate and have greater levels of buy-in to information, assessments, and interventions informed by cancer survivors, as research has found that individuals appreciate advice from others who have experienced the same condition as them.¹⁵ Thus, this study sought to identify themes related to the childhood, adolescent, and young adult (YA) cancer experience from the perspective of YA survivors.

Methods

Participants

A convenience sample of YA survivors of childhood and AYA (birth–39) cancer was recruited during their annual appointments to a comprehensive survivorship clinic located at the outpatient Pediatric Hematology, Oncology, and Stem-Cell Transplantation Center of an urban hospital in the northeastern United States. Individuals were eligible if they were aged ≥18, ≥5 years in remission, and English speaking. Compensation was not offered. The Institutional Review Board approved the study, all procedures, and data storage.

Procedure

Potential participants learned about the study from a member of their medical team, and interested individuals met with the clinical research coordinator. They were told the goal of the study was to learn more about the cancer experience from the point of view of individuals who had completed treatment. Participants completed written measures and had the option to participate in an in-person interview, directly after completing the written responses. A clinical research coordinator (R.A.S.), who was also a social work student, conducted all interviews in English. She did not have prior clinical relationships with participants. Interviews used a structured guide to ensure consistency, and ranged in length from 2 minutes 15 seconds to 12 minutes 39 seconds. They were audio-recorded and transcribed by the clinical research coordinator, and were deidentified before analysis. All measures and interviews were completed on the day of their visit, although participants had the option to return at a later date. Information regarding forms of psychological support was available upon request.

Measures

Sociodemographic and medical questions

Participants self-reported cancer diagnosis, sex, age at cancer diagnosis, current age, and number of years since active treatment. Information was verified through medical chart review.

Qualitative interview

All participants provided written (paper-and-pencil) responses to seven questions regarding their experiences with cancer and advice they would give to the medical team (Appendix 1). A subset elected to elaborate on their responses in a verbal interview, during which they were asked the same questions. The same questions were used due to uncertainty during study design about whether individuals would be agreeable to the interview, given the potential time commitment and lack of compensation. The questions were neutral to avoid bias toward positive or negative responses, or they balanced each other (negative and positive aspects).

Data analysis

Sociodemographic and medical questions were analyzed using measures of central tendency. All data from the written and oral responses were compiled, and then were coded using content analysis¹⁶ and an iterative coding process. First, the principal investigator (D.M.S.), a clinical psychologist with a specialty in pediatric psychology and pediatric oncology, identified preliminary themes and developed an initial codebook based on the research questions, preliminary review of the transcripts, and coding by two other clinical psychologists with specialties in pediatric psychology including oncology and trauma (N.M.S. and G.D.C.). Then, through an open coding phase, two coders (D.M.S. and R.A.S.) independently read and coded a randomly selected transcript to further develop and refine the codebook. Throughout the coding process, coders met a total of five times with a third researcher, a clinical health psychologist with expertise in qualitative data analysis (M.L.T.), to refine the codebook, discuss new codes, and resolve discrepancies between coders. The codebook was applied to two additional randomly selected transcripts, leading to further refinement of the codebook, and then coders applied the codebook to the remaining transcripts. New codes that emerged from later transcripts were applied to earlier transcripts. Refining the codebook also involved grouping codes into themes and subcodes representing related ideas. No new themes emerged from coding the last nine transcripts, indicating data saturation. Inter-rater reliability was then calculated. If both coders endorsed or did not endorse a theme for a specific segment of text, this indicated agreement. Based on this criterion, there was 86% agreement across themes. The number of participants who reported each code (written or verbally) was quantified to identify most frequent codes. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were used to ensure rigor throughout the study.¹⁷

Results

Participants

Eighteen individuals participated, with 12 participating in the in-person interview (Table 1). Participants identified as 50% male (n = 9), 33.3% (n = 6) Hispanic/Latino, and 88.9% (n = 16) primarily English speaking in the home, although all were fluent in English. Participants had a range of cancer diagnoses and treatments, with the majority (50%) having had leukemia/lymphoma.

Table 1.

Participant Characteristics (N = 18)

Variable	n	%
Sex
Male	9	50.00
Female	9	50.00
Ethnicity
Caucasian	12	66.67
Non-Caucasian	6	33.33
Primary language
English	16	88.89
Spanish	2	11.11
Oncological diagnosis
Leukemia/lymphoma	9	50.00
Solid tumor	7	39.00
Medulloblastoma	1	00.06
Retinoblastoma	1	00.06

Age at diagnosis	M = 12 ± 5.01
	Frequency	% participants
Perinatal	1	5.56
1	1	5.56
2	1	5.56
3	3	16.67
5	2	11.11
6	2	11.11
9	2	11.11
10	1	5.56
11	1	5.56
15	1	5.56
20	1	5.56
21	1	5.56
22	1	5.57

Frequency of themes

Several primary themes emerged, including importance of mind-set (reported by 94% of participants); positive transformation (61%); support/approach from the medical team (61%); importance of social support (56%); and burden of cancer (44%) (Table 2). Other themes included the following: challenges with lack of patient-centered care (39%), management of side effects (17%), return to normal (17%), and feedback on treatment environment (11%).

Table 2.

Qualitative Results (N = 18)

Theme	n (%)	Subthemes	Example quote
Importance of mind-set	17 (94)	Be positive “Be strong/be a fighter” It'll be over sooner than expected/the process will end Acceptance/don't try to push self? Have trust/faith (e.g., in the medical team, in God)	“Always stay strong. Cancer is just as much mental as it is on the physical side. The more positivity on your end will make the process smoother, leading to a greater outlook.” (29-year-old male)
Positive transformation	11 (61)	Involved in cancer organizations/giving back Motivating factor in their lives Shaping who they are; made them stronger Positive impact on family Fate/given to me for a reason Forming new meaningful relationships/bonds	“While I wish I didn't have to go through all the treatments and surgeries and all the pain and stress that came along with having cancer, the experience has led me to wonderful people and organizations, and I genuinely believe that I'm a more insightful, empathetic, and driven person after having had cancer.” (20-year-old female)
Support/approach from medical team (and advice for them)	11 (61)	Developing close and lasting relationships with medical team Medical team's positivity was helpful Empathy/understanding/treating everyone as an individual Importance of child life	“So I was sick when I was 3 and now I'm 21, so having that staff back then and seeing their faces now too and just like growing up and having the same people—it really feels like a family here so I knew that back then they were really rooting for me. They weren't just doctors and I wasn't just another patient, it was more than that. So I think having that support system and knowing that we were all fighting for this together really, really helped me get through everything and that was what kept me going and motivated me to keep going and fighting and everything like that, so that was really helpful.” (21-year-old female)
Importance of social support	10 (56)	Sources: From social network (friends, family) From cancer survivors Types/styles: Being thought of Being physically present Person undergoing treatment actively seeking out/engaging in support/staying involved in activities and school that they were doing before treatment	“And have a great support system if you can, and it's very hard to find one if you don't have it—and rely on people to help you. You can't do everything on your own, even if you want to.” (29-year-old female)
Burden of cancer	8 (44)	Burden on family Financial burden Direct burden of having cancer on the patient Side effects of treatment Fertility-related late effects Late effects (nonfertility) Feeling different than others (one person) Missing out on life experiences Stressful	“I wish I knew how to handle the pain, stress, and lack of control like I do now (of course at the time I was 9, on a myriad of medications, and couldn't walk, so maybe that's unrealistic).” (20-year-old female)
Challenges with lack of patient-centered care	7 (39)	Using medical jargon Directing communication more to parents than to patients Limited understanding of medical condition/treatment/side effects Limited/lack of understanding of late effects of treatment When information was repeated it was helpful	“I guess like medical wise, like information about everything because I was so young and they were so focused on the parents and telling them and not me and I'm just like clueless. So I'm just like “what's going on?” so I guess that.” (19-year-old female)
Management of side effects/coping mechanisms	3 (17)	Complementary and alternative medicine integrative therapy (essential oils, massage, aromatherapy) Activities (arts and crafts, dogs, clowns) Medical management (e.g., antinausea medication) Lollipops Wear something warm on head at night Drink water, eat healthy	“I got massages and aromatherapy—things like that, like the entertainment stuff and then there was also like body, soul, well-being stuff…. Yeah those were really great, especially when I was nauseous. I would get like acupuncture in my knees.” (20-year-old female)
You'll return to normal	3 (17)	Physical return to normal (hair will grow back) Avoidance, not focusing on cancer experience	“I don't know, I kind of thought that (when I was going through it) it would be thinking about for the rest of my life and to be honest it very rarely even comes up other than the times I have to come here or go to the doctors to get checkups and things like that. But, probably that, yeah.” (29-year-old male)
Feedback on treatment environment	2 (11)	Welcoming atmosphere of hospital (though one patient mentioned lack of privacy) Tailored for young population Harder as an adolescent and young adult	“The atmosphere of the office space, the music and toys, and the medical staff's friendliness.” (21-year-old female)

Importance of mind-set

Participants emphasized the importance of maintaining a positive mind-set when undergoing cancer treatment. A 29-year-old male stated, “It's just as much mental as it is physical.” Furthermore, a 32-year-old female encouraged current patients as follows:

Stay optimistic. Things will get better. It's really tough when you're going through and you might feel like you're alone but you're not alone…You'll be back to normal.

Other participants emphasized the importance of maintaining mental strength. For instance, a 21-year-old male advised patients to “stay strong. You will get through this, always smile, and keep your head up.” Several conceptualized cancer as an obstacle they had to endure.

Positive transformation

Many participants described cancer as a positive change, with some identifying it as an experience that infiltrated all aspects of their lives. This was exemplified by one participant who stated as follows:

I feel like even though it was so bad for a year or two years of my life, I think it's like the best thing that ever happened to me… Just in regards to my outlook on life and how I think about everything, day to day, has completely changed. (20-year-old female)

Some conceptualized cancer as happening for a reason, with one 29-year-old female stating, “I believe God gave it to me for a reason and you know what, it made me grateful for everything.” Participants identified a range of ways through which cancer had positively impacted them, from developing positive characteristics (e.g., stronger, empathetic, insightful) to being involved in organizations and giving back to others. For example, one participant reported:

I wouldn't change my experience for the world. It was hard, but it made me the person I am today. I am grateful for my life, a fighter, and appreciate the little things. I am optimistic and believe that I can fight anything because of my cancer experience. (21-year-old female)

Throughout their responses the positive transformation people experienced due to having cancer was pervasive. The difficulties experienced during treatment were not ignored, but generally individuals expressed that the positive results outweighed the hardship. Individuals felt that cancer had made them stronger.

However, not all participants described their cancer experience in these positive terms. One participant described the negative changes experienced:

…there's so many side effects that it gives me—that it gave me during the treatment and after the treatment, and I just feel like I'm not a normal child. Well, at the time I wasn't a normal child and I don't feel like I'm normal today. (22-year-old female)

When asked whether they would have gone through their cancer experience again if given the choice, (53%) reported they would.

Support from the medical team

Participants spoke about the support they had received from their medical team, and the close relationships they developed and maintained into survivorship. For instance, one participant shared how important the medical team's personal approach was given his young age:

[My medical team] made my experience like so much easier and less scary for such a young kid because they made it so much, almost fun, to come here [the clinic]. (25-year-old male)

They spoke about the helpfulness of their positivity, empathetic nature, and treating each patient as an individual.

Importance of social support

Participants emphasized the importance of social support, and encouraged patients to seek support from a variety of sources (i.e., families, friends, cancer survivors). For example, a 20-year-old female advised others to “still keep your connections and stay involved even though you're not actually at school.” Another participant recommended that current patients “Lean on [their] friends and your family and get all the support [they] need” (32-year-old female). Participants highlighted positive bonds and relationships due to having cancer. They also spoke about strengthening their relationships with their family.

Burden of cancer

Although positive growth was emphasized, the negative aspects of having cancer were not ignored. Participants highlighted the stress their families experienced. In addition, participants described many ways cancer presented a burden for their own lives, such as coping with side effects of treatment; late effects of treatment on their overall health and fertility; missing out on other life experiences (e.g., school, sports). For example, one participant shared that he would not want others to have to experience cancer and its treatment:

…although I learned a lot of life lessons from it, I wouldn't wish for anyone or their family to go through the experience, the pain, and hardship that comes with cancer. (21-year-old male)

Challenges with lack of patient-centered care

Some participants also spoke about difficulties related to care. They shared frustrations related to communication issues, including providers' use of medical jargon and some providers' tendency to direct communication more to the parents than to the patients themselves. Some wished their providers had communicated more effectively about potential risks and late effects of treatment. They expressed not fully understanding the risks and benefits of treatment at the time. For example, one participant stated as follows:

I guess the long-term effects on childbirth down the line would have been helpful in the process moving forward because there's a lot that I found out after the fact as opposed to during the fact, which is pretty stressful. (29-year-old male)

Management of side effects/coping mechanisms

Participants described different strategies they found helpful to manage treatment side effects. For instance, participants mentioned wearing wigs or hats to keep their heads warm, sucking on lollipops during port access, and proactively planning for fertility issues (e.g., freezing eggs). Some highlighted complementary and alternative medicine, including essential oils, massage, and aromatherapy. Some described engaging in activities such as arts and crafts. Other participants described the benefit of certain medications to help manage side effects.

Return to normal

Although many participants described cancer as being transformative, participants also spoke about not always focusing on cancer. Several spoke about the physical return to “normal” as well as not mentally focusing on having had cancer once treatment had ended. For instance, one stated, “Things will get better. Hair grows back, you get stronger, and you will feel normal again” (32-year-old female).

Feedback on treatment environment

The way in which participants experienced the treatment environment varied depending on age; one highlighted the friendliness of the staff, toys, and music, while another felt that the environment was too open, making it difficult to have privacy. A participant who was treated when she AYA-aged felt that the clinic was tailored more for a younger population and found it difficult to find similar aged peers.

Conclusion/Discussion

The improvement in survivorship of childhood, adolescent, and YA cancers affords the unique and important opportunity to understand the lived experience of having had cancer. Themes of positivity, in terms of both their cognitive approach to having cancer and the way in which their lives were transformed, were prevalent. In addition, the importance of support from the medical team and social networks was emphasized. Neither the burden of cancer nor challenges with lack of patient-centered care was ignored, but it was reported less commonly. It is notable that despite the diversity of this population in terms of sociodemographic characteristics, cancer diagnosis, and age of diagnosis, certain themes were reported by a majority of the participants. These themes provide information that is important when considering future forms of assessment and intervention.

The significant emphasis on mind-set and maintaining a positive orientation during treatment highlights the role cognition can play during treatment. It suggests that assessing the lens through which individuals are approaching and understanding diagnosis and treatment could be important in identifying whether modalities such as cognitive behavioral therapy could be beneficial in promoting overall adjustment. The continued positivity individuals maintained in terms of their cancer experience, attributing it to changing the course of their lives, could provide reassurance and hope to patients and families on active treatment. It is suggestive of long-term resilience, which has been reported in 65% of cancer survivors,¹⁸ and post-traumatic growth has also been shown in childhood cancer survivors.^19,20 Participants were approximately divided when asked whether they would choose to have experienced cancer if given the choice. The extent to which answers to this hypothetical question are a reflection of general positive viewpoints versus a means of rationalizing and making sense of their life experiences, is unknown.

Participants' acknowledgment of difficulties experienced during treatment (e.g., burden of cancer; challenges with lack of patient-centered care) suggests that they may have experienced post-traumatic growth.^9,19 This perspective proposes a silver lining to cancer, which is often marked by numerous challenges ranging from physical, emotional, to financial burdens. The outlying response of the one participant with history of a brain tumor, a diagnosis associated with more late effects than any other childhood cancer diagnosis,²¹ highlights that positive growth may not be pervasive across all cancer diagnoses. This suggests both the need for further research on brain tumor survivors, as well as the importance of assessing and addressing the impact cancer has had on their overall quality of life.

The importance of social support from a variety of sources is consistent with findings from other studies.^22,23 Maintaining these connections, as well as the individualized approach medical team providers took during treatment, provides helpful information for both patients and medical teams. Helping individuals understand the importance of maintaining social connections when possible, as well as promoting connections, could be a potential point of intervention.

It is important to consider the limitations of this study. The small sample size and differences between participants in terms of age of diagnoses, types of cancers, and length of time in survivorship limit generalizability. Yet, the existence of common themes despite these differences can also be considered a strength. Participants were not compensated for their time, and some of the interviews and responses were quite short. Future funded research may increase overall recruitment and lead to more rich data from longer interviews. In addition, all participants successfully completed cancer treatment; thus, these positive outcomes may have contributed to a bias or limitation in our data collection as survivors were able to look back on their experience knowing that their outcome was generally favorable. These are also collected from individuals who are being seen in survivorship clinic, and similar positive associations may not be present in those nonadherent to survivorship follow-up. These associated positive impacts from a survivorship perspective may not be as easily concluded for those who are currently undergoing treatment for childhood cancer, or from those who do not survive. Social desirability and recall bias may have also factored into responses, as participants were being asked about their experiences in the place where they were treated.

The themes generated from this qualitative study pave the way for future research. Inclusion of additional survivors across and within diagnosis group, as well as those who were diagnosed at different time points, could lead to comparison between time of diagnosis and time in developmental trajectory, as well as role of different types of cancers and treatments.

The majority of cancer survivors in this study demonstrated a strong orientation toward growth and resilience after experiencing cancer. They focused on the role of mind-set and attitude during treatment, and although difficulties were not overlooked, they were viewed as obstacles that could be overcome. While the individuals in the study are now in young adulthood and have had several years to develop their current conceptualization of their cancer experience, it may be useful to help those in active treatment cultivate such a mind-set. This might be accomplished through targeted screenings, as well as interventions during treatment.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The positions of Dara M. Steinberg, PhD, and Rebecca A. Santiago, BS, were funded by the Valerie Fund.

Appendix A1

Free Response and Interview Questions (all questions used in both formats)

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