Facing the Maze: Young Cancer Survivors' Return to Education and Work—A Professional Expert Key Informant Study

Abstract

Purpose:

An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems.

Methods:

We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking.

Results:

We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life.

Conclusions

: In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.

Introduction

Returning to work is central in cancer rehabilitation and fundamental in identity formation, financial security, and sustaining social relationships.^1,2 Existing studies focusing on adults have left a knowledge gap related to the importance of return to work or education in younger populations. Adolescent and young adult (AYA) cancer survivors are in a period of their lives wherein cancer treatment interrupts their normal development and life transitions.³ They may furthermore face severe long-term complications and physiological changes, including lack of understanding from peers,^4–6 fatigue,⁷ and cognitive impairment.⁸ These challenges may constitute barriers in returning to education or work and increase the risk of social isolation,^9,10 stigmatization,^11,12 and need to receive social benefits.^13,14

International research, mainly from the United States or Australia,^15,16 shows that insurance status and financial situation influence education and work outcomes for AYA survivors.^17–20 In Scandinavia, healthcare and education are tax funded and free of charge. A Danish survey (n = 822) of AYA survivors aged 15–29 years demonstrated that >50% needed support in returning to education or work: of those, 60% stated that they lacked the required support.²¹ By examining the AYAs' return to education or work in the setting of socialized healthcare and education, we seek to add new knowledge on psychosocial and administrative barriers and contribute to AYA cancer survivor rehabilitation. Previous qualitative research involving oncology care professionals has sought to develop consensus on the AYA population in terms of defining characteristics, policy guidelines, and strategies for approach. However, research exploring the specific understanding of psychosocial and administrative barriers AYA face after treatment from expert perspectives has been limited.²² In addition to the needs of adult cancer survivors, a Delphi study showed that AYA survivors needed support with self-esteem development, social and family function, and the return to a full life.²³ Currently, the knowledge on AYA cancer patients is restricted to a small number of decentralized professionals within the larger institutions of healthcare, education, social service, and public administration. These experts have unique insights into psychosocial and administrative barriers,²⁴ but within a limited field relating to their occupation.

Review of the literature on AYA survivors' transition to work and education revealed identifiable complications throughout the process relating to fatigue, social isolation, and limited supportive resources.^3,17,25,26 Based on this literature, national survey, and personal experience, we believed that systemic barriers in psychosocial and administrative domains present challenges to AYAs in their return to education or work. However, existing Scandinavian literature is limited. The aim of this study is to examine expert perspectives on which barriers and resources affect AYA cancer survivors' return to education or work. Hereby, the authors hoped to validate and define the experience of the AYA transition process through the eyes of key informants.

Methods

Design

A descriptive qualitative study design using semistructured key informant interviews was employed. Data were collected from January to May 2017.

Sampling

Key informants were selected through stratified purposive combined with snowball sampling.^27,28 Key informant interviews are used to access information from field experts selected for their experience and role in a specific setting.²⁹ This strategy was chosen to obtain multiple decentralized perspectives from experienced and information-rich participants on AYAs' return to education or work after cancer treatment, that is, professionals in relevant positions across the healthcare system, the educational system, social services, and public administration from relevant regional and national institutions/organizations.

Recruitment

Participants were identified by contacting gatekeepers^30,31 at municipal cancer rehabilitation centers, cancer care units, and youth educational institutions. Gatekeepers were leaders, having an overview of their employees' expertise, and they provided contact information for potential informants. Hereby, eight of the informants were recruited, whereas seven were nominated during the interviews, and subsequently contacted. Snowball sampling was done by asking each informant at the end of the interview whether they knew informants who could provide complementary knowledge. The Youth Cancer network (Danish: “Ung Kræft”) was contacted directly. All participants were contacted through email before the interview.

Data collection

We used semistructured interviews to elicit participants' experiences, while 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. To accommodate the different disciplines represented by the participants, the interview guide allowed for variation in sequence and priority of questions. A sample of themes and questions is shown in Table 1. A total of 15 (12 female, 3 male) key informants were interviewed.

Table 1.

Interview Guide Sample

Theme	Sample questions
Introduction	What is your profession and your daily job?
Introduction	Can you tell me about your experience with AYA cancer survivors?
Time and situation at first contact	When do you meet young cancer survivors?
	What is their situation when you meet them?
	How do they find their way to you?
Challenges in the system	What troubles or challenges related to public or educational administration do the AYAs most often bring to you?
	Is there something particular for young people that facilitates or helps their return to education or work?
	Is there anything special or different in the way young people engage you or the system?
The reaction of the AYA and their surroundings' handling of the situation	Do you experience subgroups with special needs?
	How does the AYAs' workplace or educational institution handle their cancer diagnosis, in your experience?
	What are your experiences concerning support from AYA's parents, if any?
Closing remarks and important points	What could improve the system? Is there any area that lacks resources or awareness?
	Do you have anything to add?
	Do you have suggestions for other experts that would be relevant to interview?

AYA, adolescent and young adult.

Interviews were conducted by the first author, K.J.P., who had experience interviewing cancer patients and extensive experience with AYA cancer survivors. Initial analysis was performed by K.J.P., who discussed his findings with the research group. Interviews were recorded electronically and mean duration was 35 minutes (28–42 minutes).

Data analysis

Interviews were analyzed thematically by using Malterud's Systematic Text Condensation.^32,33 The analysis followed four stages: (1) interviews were in depth reviewed multiple times to get an overarching sense of the content. From this, overall intuitive themes were identified; (2) meaning-bearing units were extracted, coded, and grouped according to themes; (3) the meaning-bearing units were condensed into abstract descriptions of each theme—from isolated units to nuanced descriptions; (4) to describe the aggregate meaning of the interview, we recontextualized the condensed descriptions of each theme, and the final results are presented in a descriptive form.

The research group consisted of experts in adolescent medicine and child, adolescent, and adult cancer rehabilitation. The researchers acknowledged their professional and scientific roles, attitudes, and biases in the process. Themes were discussed until agreement was reached.

After the analysis process, the condensed results of each individual interview were sent to the interviewee for validation, hereby employing member checking to ensure the validity.

Ethics

All participants signed a form of informed consent. During the informed consent process, experts were informed that their names would not be used, but they may be identifiable due to their occupational information since several experts are among a small number in the narrow field of adolescent medicine in Denmark. Occupational background was included to add contextual information to quotations and experiences as part of the key informant method.

Results

Participants

The key informants (n = 15) (described in Table 2) included professionals from hospitals, educational institutions, social services, and The Danish Cancer Society, representing 10 different professions, 7 different institutions, and an average of 8.5 years of experience.

Table 2.

Key Informant Description

Profession and/or education	Experience in current position	Institution	Relation to subject
Social worker (1)	8 years	Copenhagen Centre for Cancer and Health (Center for Kræft og Sundhed København)	Documentation and procedure regarding finances, housing, and education in relation to public and educational administration. AYAs seek out rehabilitation services themselves.
Psychologist (1)	10 years	Copenhagen Centre for Cancer and Health (Center for Kræft og Sundhed København)	Counseling patients at municipal cancer rehabilitation services. AYAs seek out the rehabilitation services themselves.
Chief consultant Master of Science in public administration	20 years	Local Government Denmark (Kommunernes Landsforening), Copenhagen	Policy maker and youth education. Experience is noncancer specific. Is experienced in the broader policy making of all education for ill or challenged youth.
Social worker (2)	4 years	Copenhagen University Hospital, Rigshospitalet	Supporting cancer patients at a hospital's adult cancer facilities. Patients are referred from their hospital department.
Social worker	3 years	Job consultant at a job center for people aged 18 to 30 years.	Limited cancer-specific experience, but expert on the public system in relation to ill AYAs.
Project worker Master of Science in health promotion and strategies and communication studies	5 years	The Danish Cancer Society	Coordinating a network for AYA cancer patients and survivors aged 15–39 years. Network provides information and support outside of the hospital environment.
Social worker (3)	10 years	Copenhagen University Hospital, Rigshospitalet	Supporting families of cancer patients at a pediatric oncology department. Experience mainly spans patients aged 0–18 years and their parents. Patients and families are referred from their hospital department.
Registered nurse, trained in adolescent medicine	2 years^a	Youth ambassador at Copenhagen University Hospital, Rigshospitalet	Coordinates a program for AYA cancer patients at a hospital. Primary focus is network, peer contact, and social support of cancer patients aged 15–29 years. Meets a broad variety of patients regardless of diagnosis and socioeconomic status.
Psychologist (2)	11 years	Copenhagen University Hospital, Rigshospitalet	Is associated with most adult cancer units at the hospital, thereby meeting a broad array of diagnoses and stages. Patients are referred from their hospital department.
Student counselor (1) Master of Arts in communication	2 years	University of Copenhagen	Supports university students in their interaction with the university administration in matters of exemptions and having different needs. Has some experience with cancer patients, although limited. University students seek out the service themselves.
Registered nurse (1)	8 years	A pediatric oncology unit at Copenhagen University Hospital, Rigshospitalet	Has a special interest in AYA cancer patients. A part of her duties is assigned to the hospital's program for AYA cancer patients.
Teacher	9 years	Student counselor (2) at NEXT Education Copenhagen	Has limited cancer-specific experience, but has rich experience in guidance on health issues related to the educational system. NEXT is a youth education institution.
Clinical specialist, MD	9 years	Copenhagen University Hospital, Rigshospitalet	Specialized in acute lymphatic leukemia, which is a diagnosis with a significant AYA representation.
Hospital priest	15 years	Copenhagen University Hospital, Rigshospitalet	Provides emotional and spiritual support for patients and relatives.
Registered nurse (2), trained in adolescent medicine	11 years	A hematological unit at Copenhagen University Hospital, Rigshospitalet	Has a special interest in AYA cancer patients. A part of her duties is assigned to the hospital's program for AYA cancer patients.

With additional 15 years of experience as an oncological and hematological nurse.

Themes

Four themes were identified across the key informant interviews: the impact of late effects, navigating the system, social reintegration, and the drive of youth, with eight subthemes described in Table 3.

Table 3.

Results

Theme	Subtheme	Extracts of meaning bearing unit
The impact of late effects	Fatigue and concentration Meeting expectations of peers and employers	“It is often the common problems many cancer patients experience—fatigue and difficulty in concentrating” “Fatigue is something you hear about often—it is something they struggle with for a long time afterwards” “Just like how the body regains strength, but lacks stamina, the mind works the same.” “Just because you look healthy and are cancer-free, it does not mean you can do the same as another 20-year-old” “How can a young person tell his or her manager that he or she may be well, but not 100%, just 70%”
Navigating the system	Documenting psychosocial and cognitive late effects Transitions Variations in support offered	“The group that has physical concerns is easier to work with because it is the system of health care that you are accustomed to work with […]. The mental and fatigue are harder to demonstrate. ” “The municipality and educational institutions would like to receive paperwork. […] There are many things in the municipality where you have to use your words correctly to help the patients.” “The mental problems and fatigue are a little harder to demonstrate” “Fatigue is very diffuse” “Then there are some different special challenges, such as those around the age of 18 years old. There are also some laws that collide” “There are transitions when one authority is responsible at one time, and another at a different time, while the young person has the need all the time” “Suddenly, the young person may have 5 or 10 different contacts in the municipality—it could be an example of a problem with coordination” “All help disappears when you turn 18” “It may be that a single employee is, but the system is not [geared for assistance]” “Sometimes problems arise with the players involved not really knowing the rules” “It depends on the case manager and how good a doctor is at writing a physician's statement”
Social reintegration	Altered self-image and worldview Lack of understanding from peers	“It can be a burden to look different” “It's really hard to look sick and look different, which can actually be a huge barrier” “When you are young, it's more disrupting for both self-understanding and ones experience of reality” “They have some challenges that their peers have never faced before in their lives” “The moment you look healthy, you also have to act healthy” “It's hard to identify with classmates suddenly” “They have some challenges that their peers have never experienced before in their lives”
The drive of youth	Reclaiming their lives quickly	“They also want to normalize quickly” “They want to earn their own money, they want to work and support themselves” “They hurry to get the chemo over so they can move on with their lives” “They are more optimistic in some way and also more daring […]. So much that some of them break their neck [expending so much energy]. Then they find out that they might need to talk about things, and just acknowledge their sickness”

Theme 1: The impact of late effects

According to the informants, AYAs suffer the same late effects as other cancer survivors; however, the consequences unfold differently. Most informants mentioned fatigue and concentration difficulties as prominent. These difficulties are invisible, but often lead to AYAs being unable to meet the expectations of peers or employers when returning to education or employment.

Fatigue and concentration difficulties

Fatigue and concentration difficulties were present in education; however, this was the most explicitly described by medical professionals, who stated that many AYAs experience fatigue up to 18 months after treatment.

Meeting expectations of peers and employers

According to the informants, the expectation from peers, educational institutions, and public administration is that when treatment is completed, the AYA has fully recovered and able to manage what he or she could before the cancer diagnosis. However, this expectation is rarely met since fatigue and concentration difficulties persist after treatment. Furthermore, physical late effects can be equally detrimental, numerous, and in some instances diagnosis specific. Medical professionals mentioned reduced muscle mass, lymphedema, and nerve damage as examples. The job consultant emphasized the differences between visible and nonvisible physical, psychological, or cognitive late effects, as the latter are harder to demonstrate.

A frequently mentioned subgroup was survivors of brain tumors, who tended to have more severe late effects according to nurse 1 and the youth ambassador.

Theme 2: Navigating the system

According to the informants, navigating the bureaucracy in various public and educational institutions posed a major barrier. Obtaining the proper documentation for late effects, especially relating to psychological and cognitive sequelae, often proved difficult, and when seeking guidance, the level of support varied since few professionals have experience with AYA survivors. This inconsistency made many AYAs' transitions into education or work difficult.

Documenting psychosocial and cognitive late effects

A university student counselor explained that the amount of administrative requirements for students has increased and that physician's statements and their content can be very complicated for AYAs to utilize. The youth ambassador agreed, and emphasized that many AYAs use substantial time to understand and interact with social administrations and educational institutions. Furthermore, the clinical specialist stated that even trained professionals struggle with documentation and require certain skills to navigate the system.

The consequences of being unable to overcome this administrative barrier can include dropping out of education, losing housing, and receiving no income.

Transitions

The informants in social administration, hospitals, and patient organizations all emphasized difficulties with transitions: in age (i.e., becoming a legal adult), from patient to survivor, and between departments in public systems. The chief consultant mentioned how turning 18 implied legal changes; this sentiment was shared by social workers across the healthcare and public systems.

Variations in support offered

The informants expressed that overall, the necessary laws and regulations were in place to support the AYA survivor, but the knowledge of how to utilize them was scarce. Much hinged on having the proper documentation.

According to informants, one of the major challenges faced is the rarity of AYA cancer cases, and accordingly, employees in social administration or education rarely become knowledgeable and experienced, leading to substantial variation in offered support and a lack of knowledge accumulation.

Theme 3: Social reintegration

The process of reintegrating into a normal social context after cancer treatment constitutes a barrier for AYAs. Although treatment itself varies depending on diagnosis, prognosis, and disease stage, informants emphasized that the social consequences of treatment for AYAs were largely unanimous regardless of specific cancer treatment. An altered self-image and worldview may lead to feeling different, and separate them from peers who do not understand the challenges they face.

Altered self-image and worldview

The informants described how a normal social life for AYAs is to have education or employment, where they have professional and social belonging. The psychologists explained that the harsh treatment impacts both the AYA's self-image and their worldview, contributing to feelings of isolation. Several informants explained that AYA's are in the process of becoming independent from their parents, choosing their careers and establishing their own household and families. Psychologist 2 stated that getting cancer as an AYA can cause an interruption and regression in the normal developmental process of becoming an adult.

Lack of understanding from peers

Peers sympathize, but AYAs may experience lack of understanding since peers may not have reflected on themes such as life, death, and the future from the perspective of life-threatening disease. Accordingly, AYA survivors may be more emotionally mature than their peers, but they have missed normal social developmental steps and thus may be less mature or psychologically developed in other areas.

Again, brain tumor survivors were specifically mentioned as experiencing challenges in peer challenges more severely.

Theme 4: The drive of youth

When asking the informants whether AYA cancer survivors had any positive attributes or advantages, the foremost advantage mentioned was that AYAs have a “drive” or motivation. Professionals frequently explained that AYA survivors tended to be positive about moving forward, with the intent to return to their life as quickly as possible.

Reclaiming their lives quickly

This reflects the prior expectation that the AYAs heal fast and are energetic, which was primarily perceived as a positive attribute.

According to expert opinion, AYA survivors themselves expected to be ready to reclaim their life as soon as treatment ended. The downside may be that some AYA survivors were so determined that they took on more than they could handle.

Results for all themes are shown in Table 3.

Discussion

In this study of expert perspectives on AYA cancer survivors' barriers and resources in returning to education or work, we found that variations in support offered and complexity of systems may lead to difficulties navigating social or educational systems. As a result, AYAs may have trouble mobilizing the energy needed to obtain the required support, such as in applying for education or return to work on special terms.

AYAs treated for central nervous system (CNS) tumors with severe late effects, especially fatigue, require extensive support for successful reintegration socially, academically, and for their careers.^7,34 The results of this interview process hypothesized that fatigue and concentration difficulties create additional difficulties in navigating complex bureaucratic systems necessary to successfully reintegrate into education or work.

This finding is in contrast to Scandinavia's universal social and welfare systems, which utilize taxes for free and equal access to systems, including healthcare and education.^35,36 Accordingly, insurance coverage or tuition fees should not constitute barriers for returning to education or work in principle, yet administrative challenges across the systems remain a substantial barrier according to our findings. This link between fatigue, late effects, and the navigation process of social, academic, or occupational systems was indirectly referenced by key informants during the interviews. Further research is needed to clarify the role that fatigue and late effects play on handling of systemic barriers in the Scandinavian welfare system.

Experts reported that because of the fatigue, cognitive difficulties, and physical and visual changes, AYAs tend to feel different, misunderstood by surroundings, and isolated, which is in line with previous research.^9–12,37,38 If the rehabilitation process is interrupted, difficult, or unsuccessful, it may affect the AYA's life in terms of lost career opportunities and poorer mental or physical health.³⁹ Hauken et al. found similar themes when exploring AYA cancer survivors' experiences reentering everyday life,⁴ finding that late effects, a lack of preparation, understanding, and being neither sick nor healthy complicated the transition to survivor. Furthermore, Hauken et al. found that targeted intervention increased quality of life (QoL), physical fitness, and decrease fatigue.⁴⁰ Support in navigation in the social, educational, and occupational systems focusing on information, education, and guidance is needed.

Across the themes, the study results state that professionals should pay additional attention to AYA survivors of brain tumors, who suffer multiple severe late effects. Although psychosocial late effects of AYA brain tumor survivors are largely underexplored, parents of AYA brain tumor survivors report below mean QoL⁴¹ and impaired social function in their children.⁴² Furthermore, compared with healthy peers and other pediatric cancer patients, brain tumor survivors themselves report lower QoL⁴³ and increased risk of depression, anxiety, suicidal ideation, behavioral problems,⁴⁴ and cognitive difficulties. In line with the results of this study, survivors of pediatric brain tumors are vulnerable and may struggle in completing education or holding employment.^45–48 Accordingly, future studies should explore the unique needs of AYA brain tumor survivors to offer the appropriate support.

The study revealed that AYA survivors have a drive and wish to return to normal life as quickly as possible. Similarly, Bellizzi et al. found that there are positive psychosocial impacts of a cancer diagnosis.^49,50 However, among negative effects were Plans for work and Plans for education. In relation to this study, it suggested that AYA survivors strongly wished to return to education or work. It was suggested that these wishes were complicated by the combination of late effects and complexities of navigating in the various systems. For confirmation, that assumption requires further research that includes the perspective of AYAs themselves.

Strengths and limitations

This study had a broad aim and used a cross-case analysis strategy. We judged the information power from the data as sufficient,⁵¹ the quality of the dialogue strong, and the analysis was supported by the established theory Systematic Text Condensation.

The credibility of the study was increased by including a variety of different professions, sectors, and practices to achieve triangulation.²⁷

This broadened the perspective, ensuring a sufficient understanding of the complex research topic, but required an increased sample size as most informants had a limited field of expert knowledge. Therefore, a limitation was that some informants possessed relevant systemic or administrative knowledge despite having limited experience with AYA cancer survivors. In addition, the knowledge was decentralized, and relevant informants may have remained unidentified despite efforts to branch out across relevant areas.

When excluding AYAs themselves in this study, results relied solely on professional experiences and, therefore, the lens of this study may reflect preconceived notions in select fields. This was done to narrow the aim and scope of this study, but the AYA cancer survivors' perspective would clarify the understanding of how best to transition back to education, work, and social lives. Accordingly, we cannot determine whether this research serves as a projection from the professionals' experience or an overall societal assumption with regard to young people.

Furthermore, there is inadequate ability to differentiate nuances across the diverse AYA experience in this article. The literature shows that AYAs desire a return to work and experience unmet needs throughout a vast multitude of sectors,²³ supporting this article's findings. However, we were unable to unfold the specific differences between school and occupational barriers. Finally, the wide AYA age range covers the transition from child to adult, and as one would expect, the barriers a 16-year old returning to education experience will be different than a 25-year old starting his or her first employment. Future studies may be able to distinguish between educational or occupational barriers, and how they differ across the age spectrum

Conclusions

In conclusion, we found that according to key informant experiences, AYA cancer survivors need support in navigating administrative barriers in healthcare, social, and educational systems when returning to education or work. Legal solutions are available; however, the knowledge of these is limited both in professionals and in AYA cancer survivors. Interrupting AYA survivors' transitions back to education or work progress may create difficulties in resuming social activity, developmental delays, and loss of educational and career opportunities. Accordingly, developing and implementing AYA survivor support measures are requested.

Footnotes

Acknowledgments

We thank Carsten Utoft Niemann, MD, PhD, for his contributions in the development of the project. We thank The Danish Child Cancer Foundation for funding the project.

Author Disclosure Statement

No competing financial interests exist.

References

Wells

, Williams

, Firnigl

, et al. Supporting “work-related goals” rather than “return to work” after cancer? A systematic review and meta-synthesis of 25 qualitative studies. Psychooncology. 2013; 22(6):1208–19.

Peteet

. Cancer and the meaning of work. Gen Hosp Psychiatry. 2000; 22(3):200–5.

Hauken

, Holsen

, Fismen

, Larsen

TMB

. Working toward a good life as a cancer survivor: a longitudinal study on positive health outcomes of a rehabilitation program for young adult cancer survivors. Cancer Nurs. 2015; 38(1):3–15.

Hauken

, Larsen

TMB

, Holsen

. Meeting reality: young adult cancer survivors' experiences of reentering everyday life after cancer treatment. Cancer Nurs. 2013; 36(5):E17–26.

Brunet

, Love

, Ramphal

, Sabiston

. Stress and physical activity in young adults treated for cancer: the moderating role of social support. Support Care Cancer. 2014; 22(3):689–95.

McLoone

, Wakefield

, Butow

, et al. Returning to school after adolescent cancer: a qualitative examination of Australian survivors' and their families' perspectives. J Adolesc Young Adult Oncol. 2011; 1(2):87–94.

Spathis

, Hatcher

, Booth

, et al. Cancer-related fatigue in adolescents and young adults after cancer treatment: persistent and poorly managed. J Adolesc Young Adult Oncol. 2017; 6(3):489–93.

John

, Sender

, Bota

. Cognitive impairment in survivors of adolescent and early young adult onset non-CNS cancers: does chemotherapy play a role?. J Adolesc Young Adult Oncol. 2016; 5(3):226–31.

Prasad

, Hardy

, Zhang

, et al. Psychosocial and neurocognitive outcomes in adult survivors of adolescent and early young adult cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2015; 33(23):2545–52.

10.

Patton

, Sawyer

, Santelli

, et al. Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 2016; 387(10036):2423–78.

11.

Cho

, Choi

, Kim

, et al. Association between cancer stigma and depression among cancer survivors: a nationwide survey in Korea. Psychooncology. 2013; 22(10):2372–8.

12.

Kim

, Yi

. Life after cancer: how does public stigma increase psychological distress of childhood cancer survivors?. Int J Nurs Stud. 2014; 51(12):1605–14.

13.

Ghaderi

, Engeland

, Moster

, et al. Increased uptake of social security benefits among long-term survivors of cancer in childhood, adolescence and young adulthood: a Norwegian population-based cohort study. Br J Cancer. 2013; 108(7):1525–33.

14.

de Boer

, Verbeek

, van Dijk

. Adult survivors of childhood cancer and unemployment: a metaanalysis. Cancer. 2006; 107(1):1–11.

15.

Hero

, Blendon

, Zaslavsky

, Campbell

. Understanding what makes Americans dissatisfied with their health care system: an international comparison. Health Aff (Millwood). 2016; 35(3):502–9.

16.

Schoen

, Osborn

, Squires

, Doty

. Access, affordability, and insurance complexity are often worse in the United States compared to ten other countries. Health Aff (Millwood). 2013; 32(12):2205–15.

17.

Parsons

, Harlan

, Lynch

, et al. Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol. 2012; 30(19):2393–400.

18.

Gupta

, Papadakos

, Jones

, et al. Reimagining care for adolescent and young adult cancer programs: moving with the times. Cancer. 2016; 122(7):1038–46.

19.

Gupta

, Wilejto

, Pole

, et al. Low socioeconomic status is associated with worse survival in children with cancer: a systematic review. PLoS One. 2014; 9(2):e89482.

20.

Landwehr

, Watson

, Macpherson

, et al. The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults. Cancer Med. 2016; 5(5):863–70.

21.

At være ug og få kræft. En spørgeskemaundersøgelse af de unges behov og oplevelser under og efter sygdom og behandling. [To be young and have cancer. A survey of young peoples needs and experiences during and after illness and treatment]: Copenhagen, Danish Cancer Society, 2015. Accessed March 6, 2018 from: www.Cancer.DK/Barameter.

22.

Pini

, Gibson

, Fern

, et al. Multi-professional perspectives on adolescent and young adult oncology across Europe: an e-Delphi survey. J Adolesc Young Adult Oncol. 2017; 6(1):178–85.

23.

Galan

, de la Vega

, Tome Pires

, et al. What are the needs of adolescents and young adults after a cancer treatment? A Delphi study. Eur J Cancer Care (Engl). 2017; 26(2):e12488. DOI10.111/CCC12488.

24.

Crabtree

, Miller

. Doing qualitative research, 2nd edition. Thousand Oaks, CA: SAGE; 2000.

25.

Kent

, Parry

, Montoya

, et al. “You're too young for this”: adolescent and young adults' perspectives on cancer survivorship. J Psychosoc Oncol. 2012; 30(2):260–79.

26.

Nathan

, Hayes-Lattin

, Sisler

, Hudson

. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011; 117(10 Suppl):2335–41.

27.

Shenton

. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf. 2004; 22(2):63–75.

28.

Patton

. Qualitative research & evaluation methods, 3rd edition. Thousand Oaks, CA: Sage Publications; 2002.

29.

Marshall

. The key informant technique. Fam Pract. 1996; 13(1):92–7.

30.

Gray

. Doing research in the real world, 3rd edition. London: SAGE; 2014.

31.

Berg

. Qualitative research methods for the social sciences, 5th edition. Boston, MA: Allyn and Bacon; 2004.

32.

Malterud

. Kvalitative metoder i medisinsk forskning—en innføring, 2.utg. Nord J Nurs Res. 2003; 23(2):50.

33.

Malterud

. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. 2012; 40(8):795–805.

34.

Spathis

, Booth

, Grove

, et al. Teenage and young adult cancer-related fatigue is prevalent, distressing, and neglected: it is time to intervene. A systematic literature review and narrative synthesis. J Adolesc Young Adult Oncol., 2015; 4(1):3–17.

35.

Hofmann

. Priority setting in health care: trends and models from Scandinavian experiences. Med Health Care Philos. 2013; 16(3):349–56.

36.

Holm

, Liss

P-E

, Norheim

. Access to health care in the Scandinavian Countries: ethical aspects. Health Care Anal. 1999; 7(4):321–30.

37.

Rabin

, Simpson

, Morrow

, Pinto

. Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res. 2011; 21(6):796–806.

38.

Musiello

, Platt

, Plaster

, et al. Dealing with cancer: the experiences of adolescents and young adults treated in adult hospitals in Western Australia. J Adolesc Young Adult Oncol. 2014; 3(1):42–6.

39.

Tai

, Buchanan

, Townsend

, et al. Health status of adolescent and young adult cancer survivors. Cancer. 2012; 118(19):4884–91.

40.

Hauken

, Holsen

, Fismen

, Larsen

TMB

. Participating in life again: a mixed-method study on a goal-orientated rehabilitation program for young adult cancer survivors. Cancer Nurs. 2014; 37(4):1.

41.

Buchbinder

, Fortier

, Osann

, et al. Quality of life among parents of adolescent and young adult brain tumor survivors. J Pediatr Hematol Oncol. 2017; 39(8):579–84.

42.

Wilford

, Buchbinder

, Fortier

, et al. “She Was a Little Social Butterfly”: a qualitative analysis of parent perception of social functioning in adolescent and young adult brain tumor survivors. J Pediatr Oncol Nurs. 2017; 34(4):239–49.

43.

Macartney

, Harrison

, VanDenKerkhof

, et al. Quality of life and symptoms in pediatric brain tumor survivors: a systematic review. J Pediatr Oncol Nurs. 2014; 31(2):65–77.

44.

Shah

, Dellarole

, Peterson

, et al. Long-term psychiatric outcomes in pediatric brain tumor survivors. Childs Nerv Syst. 2015; 31(5):653–63.

45.

Vinchon

, Baroncini

, Leblond

, Delestret

. Morbidity and tumor-related mortality among adult survivors of pediatric brain tumors: a review. Childs Nerv Syst. 2011; 27(5):697–704.

46.

Pietila

, Korpela

, Lenko

, et al. Neurological outcome of childhood brain tumor survivors. J Neurooncol. 2012; 108(1):153–61.

47.

Pfitzer

, Zynda

, Hohmann

, et al. Educational level of childhood brain tumor survivors: results from a German survey. Klin Padiatr. 2013; 225(3):138–44.

48.

Strauser

, Klosky

, Brinkman

, et al. Career readiness in adult survivors of childhood cancer: a report from the St. Jude Lifetime Cohort Study. J Cancer Surviv., 2015; 9(1):20–9.

49.

Bellizzi

, Miller

, Arora

, Rowland

. Positive and negative life changes experienced by survivors of non-Hodgkin's lymphoma. Ann Behav Med. 2007; 34(2):188–99.

50.

Ganz

, Desmond

, Leedham

, et al. Quality of life in long-term, disease-free survivors of breast cancer: a follow-up study. J Natl Cancer Inst. 2002; 94(1):39–49.

51.

Malterud

, Siersma

, Guassora

. Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual Health Res. 2016; 26(13):1753–60.