Abstract
Purpose:
Adolescent and young adults (AYAs) establish their independent, adult identities as part of their psychosocial development, a process that is largely informed by educational experiences. Not only is a cancer diagnosis disruptive to this process but also AYA cancer survivors (AYACs) face barriers as they attempt to reintegrate into educational systems. This study explores the experiences of AYACs as they return to education, to identify these obstacles and the implications for care teams.
Methods:
In-depth semistructured interviews were conducted with AYACs (n = 8), 16–19 years of age at diagnosis and 18–27 years of age at time of interview. Interviews were transcribed verbatim and analyzed using the principles of Giorgi's phenomenological analysis.
Results:
Four major themes were identified: AYACs suffer from debilitating late effects (theme 1) post-treatment as they adjust to a loss of normality and other fundamental losses (theme 2) associated with a cancer diagnosis, such as irrecoverable future plans. The educational systems (theme 3) to which they return can be both accommodating, capable of making allowances, and uncompromising, unable to adapt to AYAC survivors' needs. Appropriate mechanisms to facilitate resilience (theme 4) among AYACs are vital for successful return to education.
Conclusion:
This study supports previous findings that late effects and systemic barriers can hinder return to education, but further research focused on this age group is required. We believe that treating clinicians and specialist services can facilitate the return of AYACs to education by providing warning and comprehensive information about late effects, as early as possible before treatment completion, as well as effective information sharing with educational institutions.
Introduction
Annually, there are 2000 cancer diagnoses in the United Kingdom in adolescents and young adults (AYAs; young people 13–24 years of age).1,2 Despite cancer being the leading cause of nontraumatic death in the 13–24 age group, survival rates are high (84% between 1998 and 2008).3,4 Throughout survivorship, AYA cancer survivors (AYACs) experience significant late effects5,6; including poorer psychological and social outcomes, fatigue, and cognitive impairments.5,7–11 Worse educational and, subsequently, worse occupational outcomes are recognized consequences of the long-term physical and psychosocial sequelae of treatment for AYACs 15–39 years of age.12–15 Indeed, teenagers post-treatment were more likely to repeat a school year and 43% of these AYACs were not “back on track” with their previous educational or vocational plans up to 24 months post-treatment. 13
Difficulty transitioning back to school life is well documented in childhood cancer survivors (CCSs; less than 16 years of age),16–21 indeed, interventions to facilitate this transition have been explored and systematically reviewed. 22 Furthermore, reintegration of adult cancer patients into work is acknowledged to promote self-esteem, financial independence, and social relationships.23,24 The issues faced by AYACs as they return to education (both school and post-18-years forms of education) are only starting to be explored, despite past qualitative studies demonstrating their drive to continue education and that return to education is a significant concern of newly diagnosed adolescents.25–28
The facilitating factors for return of CCSs to education identified in past studies have limited relevance to AYACs faced with return to educational institutions for young people 16 years of age and above. For example, tailored education plans may help younger populations, but their feasibility in higher-education settings, where cohorts are larger and timetables less flexible, may be difficult. 29 In addition, despite parental support being identified as a key factor promoting successful return to education,25,30 an increased reliance on parents can reduce AYACs' sense of independence at a time when they are developing their autonomous, adult identities.15,31,32
Successful reintegration of AYACs into education promotes feelings of normality. 19 Conversely, unsuccessful return correlates with poorer social attainment, psychological distress, and higher unemployment rates.7,33–36 Undoubtedly, successful return of AYACs to education post-treatment has significant benefits.
The United Kingdom has a publicly funded health care system and educational systems that are completely publicly funded up to 18 and partially funded thereafter. The United Kingdom provides a unique setting for investigating social, physical, and psychological factors that influence the experiences of AYACs returning to education with limited external financial confounders.12,37 Past literature reports worse, unchanged, and even improved educational outcomes for AYACs. The researchers appreciate the limitations of proxy measures, such as examination attainment and employment outcomes, when evaluating AYACs' educational return. Therefore, we adopted a qualitative approach to more meaningfully explore the experiences of AYACs returning to education.12–15,21 We seek to explore the experiences of AYACs returning to education after cancer treatment. We do this to better understand the challenges they face, identify resources already available to this patient population, and make recommendations that facilitate return of AYACs to education.
Methodology
Recruitment and sampling
Study involvement was advertised on an emailing list and Facebook group, for users of Cambridge University Hospital's (CUH's) Adolescent and Young Adult Cancer service. Participants received a £ 20 voucher (≈27 USD, in accordance with current guidance 38 ) to compensate for their time.
Participant selection utilized convenience sampling. 39 Eligible participants had been treated in CUH's AYAC service 16–24 years of age, completed primary treatment, and returned to full-time education after treatment. Non-English-speaking participants were not eligible.
Data collection
Data were collected Jan–Jun 2020. A qualitative design, using semistructured interviews to elicit participants' experiences, was used. Parents or other supporting adults were permitted to attend interviews if participants so wished. Development of the interview guide (Table 1) utilized findings of past studies and researchers' clinical AYAC experiences.16–20,25–27,40
Interview Guide Sample
Authors D.J.C. and C.M.M. conducted one and seven of the interviews, respectively. Interviews were digitally audio-recorded, transcribed verbatim in English, and de-identified. Following implementation of United Kingdom COVID-19 lockdown measures from March 2020, interviews were conducted through videoconferencing rather than in person. Interview mean duration was 61 minutes (range: 50–75 minutes).
Participants
Eight participants (four male and four female) were interviewed. Participants were 16–19 years of age at diagnosis and 18–27 years of age at the time of interview (Table 2). All participants had returned to education after treatment or continued education during treatment (Table 3). All participants had attended sixth form education (ages 16–18) and six of the eight participants had attended higher education (post-18 years) by the time of interview.
Participant Demographics Table
AYA, adolescent and young adult.
Educational Profile of Participants
Sixth form is the name given to the last 2 years of standard education in the United Kingdom that occur between the ages of 16–18. In the United Kingdom, university is the name given to optional post-age-18 education. Important national examinations (A levels) are sat at the end of the second year of sixth form; these examinations very stringently determine a young person's future: poor examination results can prevent progression to university or necessitate repeating the school year.
GCSEs, General Certificate of Secondary Education; NA, Not applicable.
Data analysis
Interviews were analyzed using principles of Giorgi's phenomenological analysis,41,42 following four stages:
Interview transcripts and recordings were reviewed in depth to obtain an overarching sense of content. Data were coded for meaning units. Similar meaning units were grouped, producing thematic code groups. Final results were presented as categories in descriptive form. Synthesized themes were recontextualized to ensure they still reflected their original context. Illustrative quotations were sought for in the transcripts.
Analysis was performed iteratively. 43 Interpretations from Steps 1 to 2 of preliminary analysis informed subsequent interviews: interview guides were modified according to preliminary findings. Meaning units from later transcripts were incorporated into existing code groups from preliminary analysis and these code groups adjusted correspondingly. Data collection was stopped when the sample was sufficiently large and varied to elucidate our aim; data saturation had been reached.
Researcher triangulation enhanced validity with three researchers, minimum, involved in independent analysis and subsequent collaboration at each stage of analysis.44,45 The research team, comprising an AYAC Lead Consultant, specialist AYAC nurse, junior doctor, and medical student, both having completed AYAC clinical placements, were guided by a research-methods teaching associate experienced in qualitative research. The researchers engaged in reflexivity, acknowledging their professional and scientific roles, attitudes, and biases, and paid attention to negative cases.
Ethics
This study was approved in 2019 by the West London & GTAC Research and Ethics Committee (19/L0/1806) and was undertaken according to the Declaration of Helsinki, 1964. All patients provided written, informed consent.
Results
Analysis of participant interviews revealed four themes, summarized in Table 4. Verbatim quotes exemplifying each theme are shown in Table 5. Results, unless otherwise stated, relate to both sixth form and education post-18 years.
Descriptions of Themes
AYACs, AYA cancer survivors.
Themes and Exemplifying Quotes
CLIC, Cancer and Leukaemia in Childhood Sargent.
Theme 1: Late effects
The difficulties of late effects
All participants described significant fatigue and cognitive impairments following return to education. Experiences of fatigue required participants to “drip feed” their way back into education “at their own pace,” often missing half or even whole days of their timetables. Participants described “chemobrain,” which to them included cognitive impairments such as poor concentration, memory, and processing ability (“fuzziness”), impeded studying and completion of coursework. Significantly, participants described a “cognitive fatigue”; these two late effects were closely entwined and indistinguishable.
Loss of fitness, distinct from “fatigue,” hampered travel to and from school and between classes, a problem exacerbated by rarer late effects such as avascular necrosis of joints and peripheral neuropathy. Participants confirmed that future medical appointments for managing late effects and ongoing medical problems might reduce time in education.
Coping with late effects
Those participants informed of late effects before treatment completion identified the benefits of early warning, although they recognized their own incomprehension of the severity of these symptoms. Often the insidious and chronic nature of fatigue and cognitive impairments appeared to delay acceptance of these symptoms. A lack of warning or acceptance of late effects caused confusion and even guilt for not being able to return to pre-cancer normality as expected. Strategies utilized by participants to manage late effects included creating lists, napping in quiet spaces, and reducing extracurricular activities to prioritize education.
Theme 2: Systems
An uncompromising system
Realizing participants' desires to re-join their former year group was difficult due to time pressures created by end-of-year examinations: treatment duration and absence sometimes meant catching up and sitting examinations was not feasible. Some participants repeated a year to compensate for missed content, however, a sense of “regression” and not belonging were described. Pre-existing familiarity with new peers and other pupils repeating the school year helped reduce anxieties relating to social integration.
Facilitating factors
Maintaining contact with educational institutions during treatment was beneficial for participants: minimizing feelings of “missing out” and allowing AYACs to collaborate with schools to plan for their eventual return. Communication with only a single or few contacts appears most effective.
Participants valued control over pace of return and school timetables, expressing the need for flexibility from their educational institutions. Some interviewees identified allowances such as extra time in examination or coursework extensions as factors facilitating their return to education, but views were mixed: some found allowances useful and reassuring, even if rarely used, while others described allowances as insufficiently accommodating or not addressing the issues they faced. For example, extra examination time does not compensate for missing 6 months of the school year.
The accessibility of these accommodations for AYACs was determined by various factors. Some participants described the expectation of school or university administrative teams that AYACs should only return to education at the commencement of the next academic year, regardless of date of treatment completion. Rapport and regular contact with the teachers enhanced AYAC perception of support and could overcome these institutional attitudes. Second, allowances were more easily implemented in smaller classes. Finally, format of assessment (examination based or coursework based) and nature of the course (practical or classroom based) dictated issues faced by participants and the allowances required to overcome these. Generally, coursework-based assessment was preferred because participants could do this work at their own pace and utilize sources of support not available during an examination.
Transitions
Participants described a “big secret” as they transitioned between educational institutions post-treatment. Conversations with peers could be difficult if participants were uncertain whether or not they should mention their diagnosis to peers. Our participants found social interactions easier if new peers were unaware of the “old me” and did not know the AYAC pre-diagnosis. University pastoral systems were deemed to effectively communicate the needs of new students and no participant described lecturers having unrealistic expectations arising from a lack of awareness.
Theme 3: Adjusting to losses
Time
The education of participants needed to “take a backseat” during treatment resulting in missed teaching and necessitating significant “catching-up.” In addition, interviewees described missing out on social experiences with friends. Social media helped maintain contact with friends, but exacerbated feelings of “missing out” as AYACs were acutely aware of friends' activities.
Adjusted normality and feeling different
The disruption following a cancer diagnosis poses a threat to normality for AYACs and participants believed that “beating cancer is not just surviving,” but returning to normal. A return to old routines also heralded a reclaiming of independence lost during the cancer journey. In striving for normality, participants overexerted themselves returning to education and found returning to normality impossible, instead being forced to find a “new normal.”
Participants described “feeling different” to their pre-cancer selves and to their peers due to this loss of normality. Changes in appearances were highlighted, with female participants emphasizing hair loss and struggling with wigs, whilst both sexes described issues of weight gain and body image. The cancer experience changed AYACs' perspectives, with participants reporting reduced stress “about the small things,” greater empathy, and increased resilience. Conversely, these additional experiences set AYACs apart from their peers. Upon return to school, “awkward” or “emotional” reactions from peers accentuated feelings of disparity between AYACs and their peers, although most participants appreciated the difficulties for their healthy counterparts to react appropriately.
Adjusting future plans and aspirations
Participants described a sense of lost future aspirations accompanying a cancer diagnosis, viewing poor grades, and loss of motivation (“the education mindset”), following time out as barriers to further education and employment. Interviewees vocalized concerns that ongoing health issues such as hospital appointments, infection risks, cancer recurrence, and late effects might interfere with future plans. Two participants worried employers may be reluctant to recruit AYACs if employers overestimate the difficulties they face.
Participants' future plans changed, for example, taking gap years allowed time for recovery or attending home-town universities to benefit from family support and familiarity with health care providers. Changing interests toward health care or teaching based on positive experiences was described.
Theme 4: Mechanisms facilitating resilience
Parents and family
Parents promoted AYAC resilience through provision of emotional support, encouragement, and help with schoolwork or applications. The latter tasks required parents to have relevant knowledge. Parental support with washing and cooking provided AYACs with time and space to study; where this support was lacking, AYACs struggled.
Parents once viewed as “pushy” were often appreciated in hindsight by participants. Participants described parental concern as a careful balance between being helpful, preventing AYACs from overpushing themselves, and being restrictive or overprotective, holding AYACs back from educational return. Parental attitudes frequently changed, becoming more lenient and expecting less, reducing AYACs' perception of pressure to perform at school.
Teachers
Although often too unwell to work, participants appreciated teachers forwarding work during treatment and offers to help with catching-up, but any “special treatment” and reduced punishments from teachers were resented. AYACs expected teachers to play a wider pastoral role and valued open-door policies. Some participants appreciated teachers sharing news of their diagnosis with other students. However, when done insensitively or without permission, the impact was deleterious to educational return. Where AYACs can pass for normal, there can be reduced recognition of the issues they face; those teachers capable of recognizing these issues and responding empathetically were viewed by participants to better support AYACs and promote resilience. AYACs described greater connectedness with these teachers.
Ward-based hospital teachers were viewed as a means of continuing education during treatment; however, participants acknowledged that subject depth and specificity at A-level (education from 16 to 18) and beyond were unlikely to fall under the repertoire of hospital teachers.
Health care settings
Participants described treating teams helping navigate administrative processes and clinicians providing evidence of health issues to educational institutions: AYACs hugely appreciated rapid responses. Specialist AYAC services provided counseling and social events to improve confidence and resilience upon return to education.
Technology
The increasing use of technology helped minimize AYACs missing out on schoolwork: participants could catch up if classes were recorded and uploaded online and AYACs attended classes virtually through videoconferencing technologies or with telepresence robots designed to help AYACs remain socially and academically connected with classes. 46 Despite multiple benefits, participants were keen to stress that technological solutions were limited by willingness of teachers to accommodate these measures, internet connection for videoconferencing, reduced participation in group activities, and poorer concentration using screens than sitting in a classroom.
Discussion
Despite some flexibility, United Kingdom educational systems can be uncompromising as AYACs adjust to losses associated with their cancer and return to education, hindered by debilitating late effects. This study demonstrates much support should be available to AYACs to overcome these barriers.
While, the impact of late effects on CCSs returning to education is well recognised,16–21 we demonstrate that AYACs also suffer severe late effects, profoundly impacting return to education. Caregivers can reduce stress in CCSs by anticipating the stress, warning them, and explaining the normality of their reactions. 47 The authors maintain informing AYACs of the long-term sequelae of treatment, early in treatment, is imperative since most do not feel adequately prepared for survivorship. 48 “Late effects” clinics are increasingly common in transitional care for AYACs entering survivorship and our participants confirmed the utility of these clinics as a source of information concerning late effects and the implications for educational return. 49 To aid clinicians supporting AYACs as they return to education, we have collated the advice participants thought most salient pertaining to educational return (Table 6).
Advice from Participants
Research shows home-based learning to be less meaningful than hospital or community learning environments. 50 Our study corroborates AYACs having low satisfaction with hospital education. 51 Therefore, the benefits of AYACs returning to community-based education are manifold; in this study, AYACs were motivated to return to education, viewing return as a means of regaining normality and overcoming cancer. To this end, some centers developed comprehensive, multidisciplinary services encouraging AYAC engagement in productive occupations from time of diagnosis, regardless of diagnosis or treatment. 52 Success of such programs necessitates understanding AYACs' individual educational goals. Clinicians can utilize the HEEADSSS assessment (a psychosocial tool exploring home, education, eating, activities, drugs/drinking, sexuality, suicidality, and safety aspects of AYA life) to better understand AYACs' priorities. 53
In addition, programs supporting AYAC educational return must recognize key barriers; this study highlights late effects, lost time, and systemic barriers. To overcome intrinsic barriers at educational institutions, the authors suggest treating teams actively engage with AYACs' places of education. Our participants benefitted from health care-based support to navigate administrative systems. AYACs in this study stressed that effective teacher support was dependent on teachers understanding their health needs. Table 7 outlines key issues treating teams should attempt communicating to educational institutions.
A Summary of the Key Points Needing to Be Communicated Between Treating Teams and an Adolescents and Young Adults with Cancer's (AYAC's) Educational Institution
Where AYACs and parents are anxious about infection risk and cancer recurrence (common participant concerns), clinicians can reassure and encourage engagement in appropriate activities. This study corroborates parental support is vital for educational return. Clinician advice can reconcile conflicting views of AYACs, who are keen to return to “normal,” and concerned parents, thus facilitating parental support that best meets the AYACs' needs.
Strengths and limitations
This study recruited a small sample with even gender split from a single United Kingdom center with an already-established survivorship program; the authors believe sufficient power was reached to meet study aims. 54 Participants largely had hematological diagnoses: other AYA cancers, with differing treatment lengths and regimens, may cause different experiences of educational return. The use of convenience sampling predisposes to self-selection bias among participants, although whether this biases toward positive or negative experiences remains unclear. Concordance of our findings with past research would suggest bias is limited.
Using thematic content analysis based in phenomenological methodology allowed for in-depth analysis of our rich and broad data, although retrospective accounts might be distorted. To strengthen analysis, all researchers were involved to account for experiential biases.
Conclusion
Understanding AYAC late effects is key: warning and preparing AYACs to cope with these issues, exploring the impact of late effects on AYACs using tools like the HEADSSS assessment, and communicating those needs to AYACs' places of study, enabling appropriate accommodations to be made, are all supported by this study's findings.
Footnotes
Acknowledgments
The authors would like to acknowledge the University of Cambridge SSC fund and the Cambridge TYA Research Fund for financially supporting this project. They would also like to express their gratitude to Dr. Charlotte Tulinius and Dr. Anne Swift for their advice regarding qualitative methodology.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
Unofficial student support grant awarded. No grant number is associated.