A Qualitative Inquiry of Childhood and Adolescent Cancer Survivors' Perspectives of Independence

Abstract

Purpose:

This report examines facilitators and barriers to independence for a sample of survivors of childhood and adolescent cancer.

Methods:

We conducted 53 semistructured, in-depth interviews with adult survivors of cancer diagnosed at ages 0–20 years. Researchers qualitatively coded themes to reflect responses to the question inquiring about how cancer may have affected survivors' independence from their parents.

Results:

Among the 21 survivors who reported that cancer affected their independence, themes included challenges and motivators to independence following cancer. Challenges to independence included overprotection by parents, financial dependence, problems in healthcare decision-making, and emotional dependence. Motivators included self-confidence, desire for independence, parental support, and inadequate family support.

Conclusion:

Supportive care for survivors of childhood and adolescent cancers should include services to help them in their journey toward developmental independence.

Introduction

Survival expectations for children and adolescents diagnosed with cancer have increased steadily since the 1970's such that nearly 80% of those diagnosed with cancer will survive at least 5 years after diagnosis.¹ Childhood and adolescent cancer diagnoses arise at a pivotal time in physiological, psychological, and social development. Development in adolescence and young adulthood focuses on the forming of one's own identity and preparation for adulthood.² Certain developmental milestones need to be achieved for adolescents and young adults to transition to adulthood. Independence is one of the primary developmental concerns for adolescents and young adults and refers to behaviors such as distancing (behaviorally and psychologically) from parents and taking on more responsibility.³ Most young people in this stage experience various major life events, often including migration, leaving school, marriage, and having children, eventually becoming independent while entering adulthood. In the stage that has the greatest density of major life events,⁴ many young people struggle in handling stress and depression,⁵ although they tend to have a more positive view of their life than other age groups.⁶

Cancer could add more challenges to survivors' achievement of independence during adolescence and young adulthood. Few studies, however, have explored how cancer affects survivors' path to independence related to their parents or major life events related to independence such as education, employment, or social achievement. While two studies have reported that survivors are more dependent on their parents, and lived with them longer into adulthood compared to matched comparison group,^7,8 another study reported no differences.⁹ Several studies demonstrate limitations in education and employment for childhood cancer survivors compared to their peers without a cancer history.^10–12

Along with measurable domains of independence such as employment or educational attainment, equally important is how survivors perceive their experience of independence following a cancer diagnosis and treatment. Identification of these experiences and potential concerns can provide important insights into developing comprehensive supportive care for childhood and adolescent cancer survivors. For survivors diagnosed as young children, as well as in adolescence, the cancer diagnosis and associated treatment occur before, or in conjunction with, a pivotal time in identity and self-exploration and definition.^13,14 As the adolescent period is a time when individuals are finishing school, transitioning from their childhood homes, and entering and establishing themselves in the workforce,¹⁵ we conceived the present study to provide one of the first qualitative explorations of childhood and adolescent cancer survivors' experiences related to independence.

Methods

Recruitment process and participants

Survivors were identified by the Utah Cancer Registry (UCR), a population-based registry of the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) program. To be eligible, survivors had to be: diagnosed age <21 from January 1, 1973 to December 31, 2009, born in Utah, currently aged ≥18, alive at the time of study contact, and diagnosed with a cancer meeting International Childhood Cancer Classification system criteria (excluding nonmelanoma skin and in situ cancers). There were 2,686 eligible survivors.

To recruit, UCR mailed letters to 150 survivors who had been randomly selected according to gender, current age (18–29, 30–45, and 46–60), and strata for rural/urban country of residence at diagnosis. Following three attempts to contact, 70 were unable to be reached. Of those who were reached, three were later found to be ineligible due to their age at cancer diagnosis, 14 declined, and 63 agreed to participate (cooperation rate of 63/77, 82%). Those who agreed to participate did not differ on age, gender, or diagnosis from those who declined or could not be reached. We conducted in-depth, semistructured telephone interviews with 53 survivors, after which thematic saturation had occurred (i.e., no new themes emerged) and the investigators agreed to discontinue interviews (a detailed description of interview question development has been published previously).^16,17 Participants received a $20 gift card as a thank you. All qualitative interviews were recorded and transcribed verbatim.

The interviews covered domains such as health insurance, education and career experience, independence, and cancer impact on life. Our analysis for the present study focused on the themes of independence in relation to their cancer experience. The University of Utah Institutional Review Board approved the study.

Data analysis

We analyzed responses to the question “We're interested in learning about ways that cancer may have affected your independence from your parents. Please tell me about this.” The transcripts were analyzed by two investigators through independent coding and discussion: First, investigators evaluated each response and agreed on whether the survivor indicated that his/her independence had been affected by his/her cancer experience. For those survivors who indicated yes, their responses were examined line-by-line and assigned shorter phrases or codes, which represented the content of the segment; then, similar codes were merged together to form clusters; and then the contents of the clusters were compared and contrasted, thereby resulting in the creation of the higher level clusters or themes. The final theme structure and organization in the results were decided by another three investigators through discussion and consensus. Participants' gender, age group at diagnosis, and age group at interview were indicated in parentheses by each quote.

Results

Demographics

Demographics are presented in Table 1. For the 21 participants who indicated cancer had affected their transition to independence, there were more females (71.6%) than males (28.6%), and most were between ages 15 and 20 at diagnosis (52%) compared to the 32 who reported that cancer had not affected their independence. These participants also tended to be younger at interview than the group reporting no impact on independence. Almost all participants were white (90.5%), and half (52.4%) had some college or technical school education.

Table 1.

Demographic and Cancer-Related Characteristics by Inclusion Status (N = 53)

	Included n = 21 N (%)	Excluded n = 32 N (%)
Gender
Female	15 (71.4)	14 (43.8)
Male	6 (28.6)	18 (56.2)
Age at interview
18–28	6 (28.6)	3 (9.4)
30–44	11 (52.4)	11 (34.4)
45–60	4 (19.0)	18 (56.2)
Age at diagnosis
0–4	5 (23.8)	5 (15.6)
5–9	3 (14.3)	3 (9.4)
10–14	2 (9.5)	2 (6.2)
15–20	11 (52.4)	22 (68.8)
Ethnicity
Hispanic/Latino	2 (9.5)	1 (3.1)
Not Hispanic or Latino	19 (90.5)	31 (96.9)
Diagnosis
Gonad/germ cell	3 (14.3)	7 (21.9)
Leukemia	4 (19.0)	5 (15.6)
Lymphoma	5 (23.8)	4 (12.5)
Other	5 (23.8)	8 (25.0)
Sarcoma	2 (9.5)	4 (12.5)
Thyroid	2 (9.5)	4 (12.5)
Education
High school or less	4 (19.0)	6 (18.8)
Some college or technical school	11 (52.4)	17 (53.1)
College graduate or more	6 (28.6)	9 (28.1)
Insured	19 (90.5)	28 (87.5)

The n = 32 survivors who reported that cancer did not affect their independence were excluded from the analysis.

Themes

While cancer affected the process of gaining independence for 21 survivors as they aged into adulthood, it was a unique process for each. Survivors mentioned that their cancer experience created challenges and motivators to independence. Themes are shown in Table 2.

Table 2.

Themes That Emerged Concerning How Cancer Affected Survivors' Transition to Independence

Challenges to Independence

Emotional dependence

Overprotection by parents

Resource dependence

Healthcare decision-making

Motivators for Independence

Self-confidence

Desire for independence

Parental support for independence

Inadequate family support

Challenges to independence

Emotional dependence

Emotional dependence on parents was mentioned by survivors. Survivors expressed how difficult it was when they had to leave their parents and make the transition to another stage of life. A few survivors reported that the first time they left home was tough: “[Cancer] affected my independence because I felt like I still needed my parents very much…because I didn't want to ever leave home” (F, diagnosed 15–20, interviewed 46–60). This was echoed by another survivor who stated:

I will tell you that I had a very difficult time breaking away from my parents. I left the house and went to college when I was 19, but it was a very difficult transition for me…Yeah, because I didn't want to ever leave home…And it was hard when I got married, I cried for 2 days. (F, diagnosed 15–20, interviewed 46–60).

In addition, several survivors mentioned how the process of going through treatment changed their relationship with their parents, and made their parents more dependent on them:

I think that [cancer] definitely affected my independence. I kind of had to fight with my mom to go get a job. She doesn't want me to leave the house because she's still used to taking care of everything. And it was kind of hard for me to walk through that because I'm just kind of used to them taking care of everything. (F, diagnosed at 15–20, interviewed at 30–45).

I know definitely it affected my mom a lot, being in the hospital. She was there and never left. So, she's always wanted to definitely make sure that she is keeping a good eye on me all the time. But at the same time it's never prevented me from going out and doing things on my own and making my own decision. (M, diagnosed 5–9, interviewed 30–45).

Overprotection by parents

According to some survivors, their parents limited their activities and took care of everything during their treatment, including most of their daily tasks. However, for some, this protection extended well beyond when it was medically or developmentally necessary and survivors perceived this as hindering their opportunities for independence:

Your parents become a little more overprotective when you nearly die…I just feel like my parents were a little overprotective. You don't really get to go out and have quite as much fun as the other kids. They treat you a little more fragile…It does feel like you've always got someone hovering over you waiting for the next diagnosis. (F, diagnosed 0–4, interviewed 30–45).

This survivor felt as if their parents did not allow them to be as independent as they wanted due to the potential risk of future diagnoses.

Parents also exerted control over their child by withholding medical information:

My parents kind of kept me in the dark about a lot of what was going on. But I just had to learn on my own because they were just trying to protect me but they weren't really being helpful with giving me information. (F, diagnosed 15–20, interviewed 18–29).

Resource dependence

For some survivors, dependence on their parents for resources such as finances and health insurance continued into young adulthood, creating a major barrier to independence.

And even still I'm totally dependent on [my parents] as far as like medical things go. My parents are still helping us out with medical bills and insurance and all that kind of stuff. So it just made me more dependent on them than I would have been normally. (F, diagnosed 0–4, interviewed 18–29).

Another survivor reported struggling to pay bills due to a restricted ability to work and earn money: “If I didn't have my mom I wouldn't have enough to afford rent or go out. I help as much as I can when I do make money.” (F, diagnosed 0–4, interviewed 30–45).

Healthcare decision-making

Some survivors mentioned that they were still dependent on their parents for a number of medical issues, such as taking medicine, visiting the doctor, making treatment plans, and other activities related to medical care. One survivor claimed that making decisions was challenging for her; therefore, she always relied on her parents for decision-making: “I do not make my decisions anymore. It is too hard. I always tend to rely on my family with decisions.” At the same time, she expressed her desire to rely less on her mother: “I am trying so much to be more resourceful, but I had to rely on my mother for healthcare.” (F, diagnosed 15–20, interviewed 18–29).

Survivors relied on their parents for decision-making regarding insurance and care as they still felt too young to have ownership of these tasks:

I ask for advice on some things. And in ways they have helped me with going to see doctors and insurance and things like that. I think that's normal for kids my age to still be involved with their parents in healthcare and on their parents insurance and that kind of thing. I don't really think that cancer really had an impact on that in a way that would be different than someone who didn't. (M, diagnosed at 15–20, interviewed at 18–29).

Motivators for independence

In contrast to the cancer experience creating challenges to gaining independence, other survivors expressed how the experience motivated them to gain independence.

Self-confidence

Surviving cancer made some participants feel more independent because of the physical and psychosocial difficulties of cancer treatment: “I would tend to think [cancer] made me a little bit more independent. Just because I felt like a survivor, and I'm like ‘Wow I got through [cancer], I can pretty much tackle anything.’” (F, diagnosed 15–20, interviewed 46–60). Pride in being a cancer survivor promoted the idea of being able to face independence. “If anything [cancer] makes me…feel more independent. I mean I'm a cancer survivor. I got through something that a lot of people don't.” (M, diagnosed 15–20, interviewed 46–60).

Desire for independence

Some survivors had a strong internal desire to be self-sufficient as a result of dependency during treatment: “If anything, [cancer] made me want to get out and go do more things I guess, be more independent.” (F, diagnosed 10–14, interviewed 18–29) and “I do feel like my parents were rather protective, and I remember being very excited to move away from home when I graduated from high school being able to be on my own.” (F, diagnosed 0–4, interviewed 18–29).

This dependence was expressed for both parents and survivors in some cases, and the tight emotional and resource dependence made the survivor eager to experience independence:

[My mom] and I both depended upon one another a lot because she really had to care for me. But at the same time, it also put a strain on our relationship so it kind of made me eager to get away from her. That sounds so mean, I love my mom but [she] kind of pushed [this feeling], I need to get away from her and not have her coddling me and gain my independence from her. (F, diagnosed 10–14, interviewed 30–45).

Parental support for independence

Parents' encouragement advanced survivors' exploration and achievement of independence, mainly through granting survivors sufficient freedom, while still being accessible for help. Some survivors reported that they had no struggles with gaining independence as illustrated by this quote: “My parents let me be as independent as I wanted to be so I had no real issues with it” (M, diagnosed 5–9, interviewed 30–45). Another survivor mentioned that her independence was partly due to the way her parents treated her, which was supportive but not doting: “My parents were very supportive. And they, of course you know, I wasn't really affected physically so there wasn't any need to coddle me or baby me along” (F, diagnosed 15–20, interviewed 46–60).

Inadequate family support

Inadequate family support contributed to some survivors' development of independence. In such cases, the process of becoming independent was frustrating and painful because survivors lacked family support. One survivor shared how she had to take care of things on her own during her cancer treatment since there was little support from her parents or other family members:

[In my family] You were raised very independently. Let me put it that way. I battled through my cancer at a very independent rate because I didn't really feel that I had anybody to rely on…You just kind of felt like you were a bigger financial burden than anything. I just battled through it. (F, diagnosed 15–20, interviewed 46–60).

Discussion

Despite a growing awareness of the unique social issues for young cancer survivors,^15,18 few studies have explored how cancer affects independence–the psychological and behavioral distancing from parents–that most adolescents experience, but may be disrupted by cancer. In qualitative interviews, we found that survivors report three conflicting experiences: no effect of cancer on independence, versus it being a motivation for some survivors, compared to others who felt the cancer experience hampered their journey to self-sufficiency and separation from parents.

A majority of survivors in our study fell into the former group, with 32 (60%) reporting that their cancer diagnosis did not interfere with their independence development. This group tended to be older at the time of the interview and, therefore, further from their cancer diagnosis. In earlier assessments of breast cancer survivors, participants who were further from diagnosis demonstrated more post-traumatic growth,^15,19 suggesting that the survivors in our study may be experiencing a similar phenomenon. However, another explanation could be that survivors who experienced their cancer more recently were more likely to report that cancer interfered with their journey through independence due to differences in recall over time. Yet, our results are encouraging as it suggests that the majority of young survivors do very well in the long-term.

Forty percent of survivors, however, reported an effect of cancer on their transition to independence. Several felt that the close relationship with their parents that developed due to their cancer treatment made it more difficult to leave home and gain independence. However, one survivor mentioned that her relationship with her parents motivated her to take active steps toward independence. Although the outcome of these various parental relationships was the development of independence, both types of relationships likely affect a survivors' overall emotional well-being and familial relationships.

While the cancer experience is extremely personal for survivors, it is a major life event that may also disrupt family dynamics and cohesion.¹⁹ In our interviews, it appeared that uncertainty about the future may lead parents to resist the survivor becoming independent, either emotionally or physically. Survivors reported their parents act overprotective for years after the end of therapy and feeling emotionally dependent on their family. How this conflict is resolved is influenced, in part, by the families' ability to adapt and respond to changing needs of the survivor.²⁰ Banner and colleagues theorize how the family dynamics interact with age at cancer diagnosis and intensity of treatment will either promote or restrict the individuation and separation process that young adults go through on their path to independent adulthood.²⁰ Given how important parental relationships were in the present study, future research should more fully examine the influence of family dynamics on the development of independence.

Another area that warrants more research is how personal characteristics affect survivors' path toward independence. Specifically, what individual factors make the difference in one survivor interpreting the experience as positive or neutral versus others who are held back? Positive interpretation about cancer experience and strong motivation to be independent seemed to advance survivors' independence. In fact, the term “survivor” was adopted to empower those diagnosed with cancer to be active in their care and fight for better research and treatment.²¹ Survivors in our study sometimes felt empowered during their cancer experience and applied it to other life domains. However, other survivors were left feeling dependent on their parents for financial support and healthcare decision-making, meaning that even for survivors experiencing personal growth, their unique health and economic situation may hinder their ability to transition to independence. Research is needed to identify the characteristics that empower cancer survivors to develop independence to design and develop support mechanisms for their growth and development to self-sufficiency.

Although our data provided rich detail into how cancer survivors experienced and perceived their transition to independence, our sample was limited to a relatively small number of patients diagnosed in Utah and, therefore, may reduce generalizability. Because of the number of participants and the wide range of ages and types of diagnoses, we were not able to correlate demographic, diagnostic, or treatment variables with perceived experiences of independence. Given our results, future research should focus on how these individual factors (e.g., age at diagnosis, diagnosis type, socioeconomic status, and gender) correlate to both experiences and challenges, or even how individual survivors interpret their experiences. In addition, future research should consider ethnicity and cultural identity, which may play a role in how adolescents transition to independence from parents. We also did not evaluate resulting disabilities or sequelae that persisted following cancer treatment, which may greatly affect a survivor's journey to independence. Finally, our study was cross-sectional, so we were unable to capture how the passage of time may affect perception of the process of gaining independence. Due to the time since diagnosis of some participants, this enhances recall bias.

Survivors of cancers diagnosed in childhood and adolescence experience unique issues in the development of independence. As a cancer patient, they were dependent on their parents for managing medical care and the financial aspects of their cancer. After completing treatment, and even as they age into young adulthood, survivors report feeling that they are allowed limited independence by their parents. However, the journey through cancer also provides great opportunities for personal development. Supportive services are needed for the entire family that incorporates providers with knowledge of the key developmental transitions of children and young adults. Although many survivors did not report that cancer interfered with their transition to independence, services such as vocational support for survivors or support groups may be needed for a large number of young survivors. Such support can help parents encourage their child from diagnosis through survivorship on the importance of transition to allow the survivor to develop and explore at the same pace as their peers, when the medical risks are sufficiently low.

Footnotes

Acknowledgments

This research was supported by the Huntsman Cancer Institute/Huntsman Cancer Foundation and Primary Children's Hospital Foundation.

Author Disclosure Statement

No competing financial interests exist.

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