“On Your Own”: Adolescent and Young Adult Cancer Survivors' Experience of Managing Return to Secondary or Higher Education in Denmark

Abstract

Purpose:

As a consequence of cancer treatment, many adolescents and young adults (AYA) patients are required to take leave or face setbacks from their education. While most AYA cancer survivors and survivors of childhood cancer are capable of successfully returning to the educational system, unsuccessful returns place AYA at an increased risk of social isolation, stigmatization, and financial burden. The perspective of AYA cancer survivors who have returned to education is valuable to understand the challenges faced and resources available throughout this transition. The purpose of this study was to explore AYA cancer survivors' management of returning to secondary or higher education.

Methods:

Semistructured interviews were conducted with AYA cancer survivors between the ages of 15 and 25 at diagnosis pursuing secondary or higher education (n = 9). Interviews were transcribed verbatim and analyzed using Malterud's Systemic Text Condensation.

Results:

Five themes were found: (Theme 1) Symptoms and Late Effects, (Theme 2) Navigating the System, (Theme 3) Lack of Understanding from Peers, (Theme 4) Unofficial Support, and (Theme 5) Changed Perspectives. AYA cancer survivors described facing challenges from the physical late effects of cancer treatment, as well as misunderstanding from municipal systems and peer groups. However, they stated that assistance was provided from unofficial sources of support, such as teachers and parents.

Conclusions:

AYA cancer survivors face social and systemic challenges throughout the return to education. The findings of this study support previous research suggesting that late effects and misunderstanding from peers and academic and municipal institutions may play a role in impacting social outcomes and academic performance.

Introduction

In recent decades, increased focus has been placed on the impact of cancer diagnosis and treatment on adolescents and young adults (AYA) and the effects this process has on their lives moving forward.^1–5 The majority of AYA will become long-term cancer survivors, but this survivorship is often accompanied by difficulties, including infertility, fatigue, cognitive impairment, psychological distress, and altered social relationships.^3,4,6–11 As consequence of cancer treatment, many AYA patients are required to take leave or face setbacks from educational and academic pursuits.^3,12–14 While most AYA cancer survivors and survivors of childhood cancer are capable of successfully returning to the educational system at the level of peers,^12,15,16 unsuccessful returns place AYA at an increased risk of social isolation, stigmatization, and financial burden.^8,12,17–19 Factors surrounding transitions back to education and work have been studied in adult cancer survivors and in survivors of childhood cancers, but there is a research gap related to specific difficulties and in what direction resources can be provided to assist in educational return, particularly in the AYA population.^15,20–23

Education is central in AYA survivorship since previous research has found that in young cancer survivors, pursuing secondary or higher education may assist in returning to normal adolescent or young adult development.²⁴ While most reports indicate that survivors of childhood and adolescent cancers are successful in returning to higher education and are comparable to their peers, worse educational and social outcomes in secondary or higher education, such as skipping a grade or finding difficulty connecting with friends, have been seen.^15,20,24,25 Furthermore, survivors of childhood and adolescent cancer have been reported to complete secondary or higher education in lower proportions than peers.²⁶ As much research focuses on the experiences of childhood cancer survivors, further elaboration on the specific experience of AYA cancer survivors is of pertinent research interest.

In Scandinavia, healthcare and education are free-of-charge, having been funded through public taxes.²⁷ As such, Scandinavia offers a unique environment to study higher education with limited outside financial complications. Yet, even in a country where economic burden should be alleviated, there are still difficulties. A 2015 survey from the Danish Cancer Society of AYA cancer survivors aged 15–29 (n = 822) found that more than 50% expressed a need for support in their return to education or work, with 60% of those individuals stating that they did not receive the desired support.²⁸

Our research team has performed earlier qualitative research addressing barriers to returning to education and work from the perspective of field experts in education, healthcare, and the municipality.²⁹ This study shows that AYA cancer survivors face difficulties navigating municipal barriers, reintegrating into social systems, and managing late effects according to expert opinion. However, experts additionally reported that AYA cancer survivors possess a “drive” that aids in return to education and work.²⁹ The current project extends this work by obtaining the perspectives of AYAs themselves.

For the purposes of this study, we have decided to focus on the perspective of AYA cancer survivors who have returned to higher education to best understand what challenges are faced in returning to education, and what resources are available to assist in this process of transition. Accordingly, the aim of this study is to explore AYA cancer survivors' management of returning to secondary or higher education.

Methods

Design

We used a descriptive qualitative study design using semistructured interviews. Data were collected from April to August 2017.

Sampling

Participants were selected through criterion and convenience sampling.³⁰ Inclusion criteria were that participants were aged 15–25 at time of diagnosis, had previously received chemotherapy, had completed their primary treatment plan, and were enrolled in secondary or higher education. Participants were excluded if they were unable to speak or read Danish.

Recruitment

Participants were recruited via advertisement in Danish youth support organizations for AYA with cancer, including Ung Kræft (Young Cancer) with the Danish Cancer Society and Kræftværket (named after the Danish words for “power plant” juxtaposed with the word for “cancer”) at Rigshospitalet, Copenhagen University Hospital. All participants were contacted via email, Facebook or text message before the interview.

Data collection

We used semistructured interviews to elicit participants' experiences and knowledge, while still allowing for relevant topics to emerge. The interview guide was developed by the research team members who possess qualitative, AYA, and cancer-focused research experience. A sample of themes and questions can be seen in Table 1.

Table 1.

Sample of Themes and Questions in Semistructured Interview Guide

Theme	Sample questions
Managing Treatment and the Return to Education	How have you experienced the transition out of primary treatment?
Challenges in Educational Institution	What is life like for you both in education, and in general?
Challenges in Educational Institution	How would you describe your experience with your educational institution?
Resources from Municipality and Other Sources	Who primarily helped you in your transition after treatment?
	Did you continue with education during treatment?
	If you did not continue, what was it like to return?
Reaction and Future Prospects	How did you handle any systemic problems you faced?
	How has your disease impacted your view of the future, such as finances, career, or higher education?
	What has been the greatest overall impact of your illness?
Conclusion and Overall Opinion	What has been the biggest challenge you've faced in your return to education?
	What could have been improved? Are there areas where there is a lack of resources or attention?
	Is there anything else you would like to share about your experience?

Interviews were conducted by author K.J., MSc with previous experience working with AYAs and interviewing cancer patients. Before the interview process, author K.J. disclosed his status as a cancer survivor to build rapport with interviewed AYAs. All interviews were transcribed verbatim in Danish. Interviews' mean duration was 45 minutes, ranging from 27 to 69 minutes, and were recorded electronically. Illustrative quotations used in this article were translated into English by authors K.J. and A.E.

Participants

Nine participants (seven female, two male) aged between 19 and 26 at the time of interview and between 17 and 24 at the time of diagnosis were interviewed. All participants had either returned to education during or after cancer treatment, or had continued their education during cancer treatment with special accommodations. Eight participants were attending secondary or higher education at the time of interview, defined as either degree-seeking students at the bachelor level or higher or students pursuing a vocational or technical education. One participant was on sick leave at the time of interview. The diagnoses of participants included the following: lymphoma, leukemia (acute myeloid leukemia [AML] with history of stem cell transplant), cervical cancer, testicular cancer, breast cancer, primary brain tumor, and pancreatic cancer. All participants had received previous chemotherapy. Further information on individual participants is available in Table 2.

Table 2.

Interviewed Participant Demographics and Educational Status

AYA number	Gender	Age	Diagnosis	Time since last chemotherapy treatment	Educational status
1	Female	19	Lymphoma	>1 year	Returned to education while completing treatment
2	Male	23	Leukemia	<1 year	Received allogenic bone marrow transplant after returning to education; after transplantation, continued with remote learning
3	Female	26	Cervical cancer	>3 years	Continued education while completing treatment with accommodations for absence
4	Female	24	Lymphoma	>3 years	Returned to education after completing treatment
5	Male	25	Testicular cancer	>1 year	Returned to education after completing treatment
6	Female	24	Breast cancer	>2 years	Returned to education after completing chemotherapy; currently receiving Herceptin treatment
7	Female	27	Pancreatic cancer	>2 years	Returned to education after completing treatment
8	Female	25	Breast cancer	>3 years	Currently on sick leave; currently receiving Herceptin treatment
9	Female	25	Brain tumor	>10 years	Completed education while receiving treatment with accommodations for absence

AYA, adolescents and young adults.

Data analysis

Interviews were analyzed using Systemic Text Condensation.³¹ By this method, analysis followed four stages: (1) interviews were reviewed multiple times in depth to obtain an overarching sense of the content. From this, overall themes were identified; (2) meaning-bearing units were extracted and transcribed from the interviews, and were then coded and grouped according to overall themes; (3) meaning-bearing units were condensed and fused into abstract descriptions of each theme, thus providing nuance to otherwise isolated units; and (4) the condensed descriptions of each theme were recontextualized to describe the summative meaning of the interview. At this point the final results were presented in descriptive form. By this method, thematic analysis can be achieved while also adding additional significance to the concepts across all themes for a complete perspective.³¹

Analysis was performed by the research group, consisting of experts (four female, one male) in the field of child and adolescent cancer, adolescent and adult rehabilitation, adolescent medicine, and qualitative research. The researchers acknowledged their professional and scientific roles, attitudes, and biases in the process. All themes were discussed until agreement was reached.

Ethics

All participants completed informed consent forms before participation in interviews. All identifying patient information was anonymized for the duration of this project. This research was approved by the Danish Data Protection Agency with journal no. RH-2017-128, I-suite no. 05466. All procedures performed in studies involving human participants were in accordance with the ethical standards of the Institutional and/or National Research Committee and with the Declaration of Helsinki 1964 and its later amendments or comparable ethical standards.

Results

Five themes were identified across all participant interviews (Table 3). Themes included (Theme 1) Symptoms and Late Effects, (Theme 2) Navigating the System, (Theme 3) Lack of Understanding, (Theme 4) Unofficial Support, and (Theme 5) Changed Perspectives.

Table 3.

Themes, Subthemes, and Selected Example Quotes Identified Across Participant Interviews

Theme	Subtheme	Example quote
Symptoms and late effects	Physical symptoms. Invisible problems	For me the greatest challenge has been to find your way back, and also get well again, because you may have finished treatment, but you still don't feel well. (AYA 4, female, age 24)
		I couldn't remember a thing, and I couldn't concentrate. It is pretty hard when you have to study for an exam. (AYA 3, female, age 26)
		I could feel until October that I couldn't really… If I had to get out of bed, I had to do it sideways. (AYA 5, male, age 25)
		I ended up with good grades, but it has been difficult. The level increased, and this is the first time I noticed memory difficulties. It was not a problem solving them [math, physics and chemistry reports], but it was a problem.
		Remembering the results—that was the biggest challenge. I am a med student today so it was not all bad, but it was difficult. (AYA 9, female, age 25)
Navigating the system	Taking initiative to access municipal resources. Lack of understanding from the municipality Feeling unprepared	What I have been needing from the municipality has been a caseworker who somehow had better contact with me and knows something. (AYA 2, male, age 23)
		When you call the union, it's a student who answers the phone. “Oh it's a virus? We don't cover that, because it's your own fault.” How can it ever be one's own fault that you get cancer? (AYA 3, female, age 26)
		I imagine it is like getting out of jail. You have some framework to relate to and suddenly you are released and then it is like: You are on your own. And you can't just do that. (AYA 4, female, age 24)
		I think you get a little guidance, but then you are on your own. (AYA 6, female, age 24)
Lack of understanding	Distancing from peers. Pity. Cancer as a taboo	Some of my good friends retreated because they didn't know how to talk about it or how to react around me. (AYA 1, female, age 19)
		I actually miss… I haven't really gotten any friends at my new studies. (AYA 5, male, age 25)
		You can feel that people need some help to not think of me as sick anymore. (AYA 2, male, age 23)
		It is taboo. […] Everyone literally knows everyone and I don't want to be known as the girl that had breast cancer, so that's why. At that point I just needed to be the girl that was on sick leave. (AYA 8, female, age 25)
Unofficial support	Flexibility in scheduling studies. “Special treatment”	Many of my teachers helped without articulating it. (AYA 1, female, age 19)
		I had a really good study group and we are a small institute, which means that all our professors know us. They went along with me drawing a blank sometimes. (AYA 3, female, age 26)
		I had some great teachers. There was a topic that I missed and this was excluded from my exam, and I got to choose the examination time, so it was not too early, and I could return to the hospital after the examination. Furthermore, my teachers were good at informing me about what was going on in the classes, and I got private tutoring. […] My aunt who is a teacher also helped me with my finals, especially since they had changed the examination form, otherwise I do not think that I would have managed that examination very well. (AYA 9, female, age 25)
Changed perspectives	Feeling different than peers. Increased dedication. Pursuing education to be “normal”	I can't handle going out with my friends every weekend. I can't handle it. […] I can't behave like a 24-year-old. (AYA 7, female, age 24)
		I think you see things in a grander perspective than others do. I definitely think so. It is in relation to everything I think. (AYA 2, male, age 23)
		Now that I have started again, I have decided not to say anything, because it is not something you can see. Now I'm just someone with short hair, so nobody knows I had long hair. That was my first decision. Now I would be one of the normal young people. (AYA 6, female, age 24)
		Before I thought that I should just have a lot of money and work all the time. That is no life, but maybe it was before. (AYA 8, female, age 25)

Theme 1: symptoms and late effects

Interviewed AYA cancer survivors described difficulty in secondary or higher education due to symptoms and late effects. All informants described some difficulty placed upon them after receiving treatment for cancer, although a variety of different symptoms and late effects were described. Physical limitations directly associated with treatment were mentioned, such as one patient who described lymphedema in her arm that limited physical movement and lifting.

The most frequently described symptoms and late effects, however, were fatigue and lack of concentration. Interviewees reported lower overall energy levels, which created difficulty in attending courses and maintaining the same social life as before cancer treatment. In addition, they reported that fatigue and lowered concentration created challenges in completing coursework and examinations. These particular symptoms were also described as difficult because they were not visible. Several AYA cancer survivors reported that while they appeared healthy, they were still experiencing lingering effects, which led to additional stress as it was hard explaining to peers, the municipality, and their educational institutions.

Theme 2: navigating the system

AYA cancer survivors also described challenges throughout the process of navigating educational and municipal systems. Interviewed AYAs described feeling that they had received little preparation for returning, and felt as though most initiative had to be taken on their own to locate necessary municipal or educational resources, such as counseling, therapy, and financial support. While some AYAs stated that they were successfully able to overcome these challenges, it was still an isolating and stressful experience to face alone.

The municipal system was also described as difficult to work with, with bureaucratic barriers that were not respectful of the needs of AYA cancer survivors. One AYA stated that they had frequently been unable to schedule meetings and coordinate plans with representatives from the municipality due to healthcare limitations, and the municipality expressed little consideration and understanding of their personal needs. As such, this AYA suggested that it would be highly beneficial to interact with municipal workers with greater flexibility and understanding of flexibility and cancer survivorship.

Finally, one AYA brought up the inherent barrier of the academic calendar year, stating that they found difficulty and many delays in returning to education as classes could only be entered at specific dates.

Theme 3: lack of understanding from peers

Participants also identified a lack of understanding from their peers as a challenge throughout the transition back to secondary or higher education. There were many who described a distancing from their peers. AYA cancer survivors often stated that their peers did not understand their situation completely, which changed how they would interact. In addition, many AYA stated that they felt as though their peers pitied them, often focusing on their disease.

For these reasons AYA cancer survivors reported that they felt as though cancer was a taboo topic to discuss. They did not feel as though they could disclose their status as a cancer survivor, as it made others uncomfortable. Furthermore, participants stated that disclosing their survivorship would also change the way others saw them, presenting themselves as a “cancer patient” as opposed to a “normal” peer.

Theme 4: unofficial support

However, despite these described challenges, interviewees reported that they received support throughout their transition in an unofficial manner from sources such as family members, guidance counselors, and school faculty. Some benefits that were received from unofficial support sources included flexibility in scheduling examinations and coursework, as well as other special attention throughout classes. These benefits were viewed as “unofficial,” and arranged through agreements outside formal venues. While official support resources were criticized by interviewees, these unofficial support resources were described as helpful, and often more understanding of their situation.

AYA cancer survivors also reported that family members, particularly parents, served as a great source of unofficial support when it came to navigating municipal barriers.

Theme 5: changed perspectives

Finally, AYA cancer survivors described a change in their perspective that separated them from their peers, both in terms of physical capability and psychological status. Some AYA described feeling physically different from their peers through discernable differences such as scars, lymphedema, or short hair. In addition, the invisible and late effects described earlier in this article contributed to the feeling of difference, making it difficult for AYA cancer survivors to feel as though they could keep up with their own expectations for themselves, and the expectations of school, and socializing with peers. Interviewed AYAs also described feeling psychologically different, and cited feelings of depression and social isolation as consequence of their experiences.

However, AYA cancer survivors also stated that their disease and course of treatment led to perspective changes that increased their dedication in life. One AYA described how he had felt as though his life had previously been focused on money and work and now felt as though there was much more to life besides work. AYA cancer survivors expressed that they felt additionally dedicated to their academic and occupational pursuits. Education was mentioned as a stepping stone on the road to returning to a “normal” life, and several interviewed AYAs stated that they wished to continue with education so that they could feel “normal.”

Discussion

In this qualitative study examining challenges and resources available in the return to secondary or higher education in AYA cancer survivors, it was found that AYAs faced challenges posed by consequences from treatment, complex navigation, and miscommunication in interacting with municipal and school officials, and social distancing from peers upon returning to the educational environment. However, AYA cancer survivors described unofficial sources of support that alleviated the burden these challenges posed, as well as alterations in personal perspective that may lead to increased dedication in returning to education. While there have been conflicting previous reports on the topic, AYA cancer survivors and survivors of pediatric cancer may demonstrate decreased academic and social outcomes in comparison to healthy peers.^15,20,24,25 The findings of this study suggest that late effects and misunderstanding from peers and academic and municipal institutions may cause issues for AYA cancer survivors. Potentially, this stress may impact social outcomes and academic performance.

Feelings of social isolation are well documented in existing AYA cancer survivorship literature.^3,32,33,34 Cancer survivorship carries stigma associated with internalized shame and perceived decreases in social support^34,35; as such, many AYA may be hesitant to disclose their cancer status to others for fear of misunderstanding or labelling.^35,36 The AYAs interviewed in this study additionally described feeling isolated due to late effects and their imposed physical limitations, particularly fatigue.³⁷ Isolation therefore may arise as consequence of both their physical limitations and the stigma of cancer survivorship, directly leading to feelings of difference. While this can be detrimental, our report and earlier findings indicate that cancer survivorship may also serve as a motivating factor that provides deeper insight on life and encouragement for future planning.^14,24,33,38 These changes may even prove beneficial in certain fields of study. However, the precise impact of this increased motivation on academic and social outcomes is unclear.

Our previous research, which interviewed experts with experience working with AYA cancer survivors, discussed the limited information on AYA cancer survivors throughout the professional setting.²⁹ Increased information on the needs of AYA cancer survivors for municipal workers and faculty throughout secondary and higher education would be of benefit, as misunderstanding and miscommunication were found to be significant challenges for these survivors, and many needs are yet unmet.^7,19,39 While it is not likely a feasible solution to provide widespread education on AYA cancer survivors, one solution is to increase the number and role of informed caseworkers and resources to assist AYA cancer survivors. Increased transitional care would benefit patients in easing the process of navigating systemic barriers, as well as ensuring that throughout the transitional process, they do not feel abandoned or alone.

Strengths and limitations

While this study has a small sample size, we determine the information power of this research to be sufficient to elaborate current research with important perspectives of AYA cancer survivors' experiences in the education.⁴⁰ This study was broad in aim, however, all interviewed subjects provided informative insights, analysis was supported by the established method of Systematic Text Condensation, and interviews were sufficiently dense.³¹ While the findings of this research may be utilized to understand AYA cancer survivors' experience of secondary and higher education, the participants are not necessarily representative of all AYA cancer survivors, as all interviewed participants are from Denmark, and interviewed participants show a female predominance that does not correspond with overall rates of cancer in AYAs. To further elaborate on these findings, more research is needed from a more diverse population. In addition, research on the impact of cancer treatment on education from countries without a nationalized healthcare or public educational system is needed. Information on the backgrounds and experiences of AYAs is also limited by self-reporting. The specific nature of each participant's return to education and duration since last treatment was self-reported, so connections between experiences and AYA demographic parameters may only be approximated.

Author K.J. disclosed his status as a cancer survivor to establish rapport with interviewees throughout this project. Analysis of transcribed interviews was conducted by the rest of the research team, so as to eliminate the potential for experiential biases and strengthen analysis results. However, the findings of this research may still be affected by self-selection bias among interviewees. Still, the role of bias in the findings of this study appears to be limited, as sentiments expressed by participants reflect earlier qualitative research working with AYA cancer survivors.^4,6,29,33

Conclusions

In conclusion, AYA cancer survivors face challenges when returning to higher education in the form of late effects, municipal and academic system barriers, and misunderstanding from peers. However, AYA also are benefitted by a motivating alteration in perspective, as well as by the aid provided by unofficial sources of support. Increased information and academic and social resources throughout the transition back to education can benefit these patients to help alleviate some of the systemic burden. Further research and insight into the development of interventions to ease the process of transition to education is in progress, yet still needed, through methods such as the development of organizations for AYA cancer survivors to create supportive peer communities and training programming for youth ambassadors who can assist throughout transitional and municipal processes. Alongside these interventions, academic institutions should move forward with the implementation of flexible and transparent structures for students with serious healthcare needs. The development of informative, accessible programs and training of experts may be of great assistance for the transition of AYA cancer survivors to secondary or higher education and increase health and academic outcomes.

Footnotes

Acknowledgment

We thank The Danish Child Cancer Foundation for funding the project.

Author Disclosure Agreement

No competing financial interests exist.

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