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How teenagers continue school after a diagnosis of cancer: experiences of young people and recommendations for practice Simon Pini*,1, Peter Gardner1 & Siobhan Hugh-Jones1

Aim: To understand how teenagers experience school following a diagnosis of cancer, and to offer recommendations for practice. Methods: Using visual interviewing at three time points, 12 participants (13–16 years) from England discussed school experiences during the year following their diagnosis. Interpretative phenomenological analysis provided in-depth assessment of their individual experiences. Results: One main theme emerged: regulation and calibration. Remaining engaged in school allowed teenagers to maintain noncancer versions of themselves as well as incorporating new cancer experiences. Six subthemes emerged: examinations/grading, school community, miscommunications, peers, altered appearances and normality. Conclusion: A total of 13 recommendations are offered for the development of education support to young people with cancer, covering the role of the school, the young person and their peers, flexibility and timing. First submitted: 15 February 2016; Accepted for publication: 31 May 2016; Published online: 17 June 2016

Background Cancer is the most common cause of nonaccidental death among teenagers and young adults (TYAs) worldwide, and every year approximately 2000 teenagers are diagnosed with cancer in the UK alone [1,2] . One in 312 males and one in 361 females will get cancer before they are 20 years old [3] . Recent published data have shown that cancer survival in TYAs in England has improved greatly, from 46% in 1968–1977 compared with 84% in 1998–2008 [4] . In the USA, survival rates in this population are comparable at 82.5%, with 14 cancers showing significant improvement since 1992 [5] . Many teenagers want to continue with school after a diagnosis of cancer [6–9] and it is their fundamental right to do so. School services are available for teenagers with cancer in the UK, but provision is inconsistent, varies geographically and is often perceived as inadequate by patients and oncology practitioners [9] . Continuity of education following diagnosis, through treatment and into survivorship is difficult within the restrictions imposed by cancer, treatment and hospital appointments. There has been previous evidence to support the benefits of professionals who have a specific role to provide guidance and planning to help teenagers, their families and schools, navigate the competing demands of cancer, treatment and education [10,11] . This type of support is not always available, or is inconsistently provided across locations. Most teenagers with cancer in the UK have access to a hospital school, hospital-based education teams and/or home schooling services. However, hospital school services are available only to inpatients and for a limited time, The School of Psychology, The University of Leeds, Leeds, West Yorkshire, UK *Author for correspondence: Tel.: +44 113 2067628; [email protected]

Keywords

• adolescents • education • IPA • psychosocial • qualitative • school • teenagers • visual

interviews

1

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Research Article Pini, Gardner & Hugh-Jones and young people sometimes find the work set within these services is not at their level [6,8,12] . A systematic research review of studies (n = 22) concerned with the ongoing education of teenagers postdiagnosis, showed that the most studied issues were school absence, returning to school following treatment, peer relationships and the long-term impact of cancer on academic and vocational achievement [13] . The review highlighted how healthcare and school professionals, parents and the teenagers themselves made important contributions to the nature of school reintegration [10,12,14–15] . Some studies showed that teenagers considered maintenance of existing peer groups [16,17] and managing body image issues [18,19] as particularly important to their reintegration. However, the review highlighted inconsistencies across studies in the reported links between cancer and school attainment. One study reported that teenagers had worse academic outcomes than normative populations [20] , another that cancer had no impact on academic outcomes [21] and a further study reported that teenagers had a higher level of academic and vocational achievement [22] . A recent review of papers (n = 17) related to schooling in pediatric and adolescent patients conducted in the USA supported findings around the importance of communication and reintegration programs [23] . They recommended that school reentry programs should be in place to coordinate reintegration into school and these should be delivered by experienced oncology professionals [23] and showed that there were examples of this being successfully implemented [24,25] . Again there was support for the potential benefit of a dedicated professional to bridge the gap between health and school systems [26] . Despite offering some recommendations, this review highlighted that the current evidence base was conceptually and methodologically weak, and that there was a need for more research in this area before dedicated support and services can be reliably developed [23] . These reviews both highlighted the paucity of studies exploring school experiences following a cancer diagnosis, and agreed that only a small selection of these had collected data about school directly and specifically from teenagers [12,27] . This is a major omission, given that understanding the experience of young people is essential to effective support, both to the young people, but also their families and schools. There are very few prospective longitudinal studies completed

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in this population and very rarely is there the presence of a clear adolescent voice. Without attention to the experience of young people themselves, it may remain difficult to explain the inconsistencies in reported academic outcomes for teenagers with cancer. Thus, the present study adopted a qualitative approach with the following research question: how do teenagers experience their ongoing education following a diagnosis of cancer? Previous literature has highlighted the importance of understanding the individual context within which teenagers experience their care and therefore further qualitative research into the perspectives that teenagers with cancer have about their own school experiences is needed [28,29] . Utilizing a visual methods-based approach to interviewing, interviewing at three different time points and using the analytic method of interpretative phenomenological analysis (IPA), this study aimed to document the experience of young people in order to understand their individual perspectives, common themes across the sample and inform recommendations for services. Methods ●●Design

This research was a longitudinal, photo elicitation study with interviews over three time points. ●●Participants

Young people were recruited from pediatric and teenage outpatient clinics and inpatient wards within a cancer center in the north of England. They were eligible to participate if they: had a leukemia, lymphoma, soft tissue sarcoma or bone tumor diagnosis; were 13–16 years of age; were being treated with curative intent at the time of recruitment; and were within 2 months of diagnosis. Teenagers whose cancer involved the brain and/or who were receiving palliative care, were excluded due to distinct educational experiences and outcomes for these groups [21,30–32] . Twenty young people were approached and 12 consented to participate. The remaining eight declined for reasons including; poor current health, deferring their year of school, parental wishes and already having too much to think about. Table 1 shows that participants were between 13 and 16 years at the time of recruitment and the diagnoses represented were Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, osteosarcoma, acute lymphoblastic leukemia and aplastic anemia.

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Ongoing education for teenagers with cancer

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Table 1. Details of participants. Participant Age at time points (years) pseudonym T1 T2 T3

Diagnosis

Interviews Visual Parent completed images present

Patricia Matt Hayley Mario Alanna Robert William Nathaniel Annabella Nicola Faisal

13 14 15 15 n/a 15 15 13 13 16 16

14 n/a 15 16 n/a 16 15 14 13 16 n/a

14 n/a 16 16 14 16 16 14 13 17 n/a

3 1 (T1) 3 3 1 (T3) 3 3 3 3 3 1 (T1)

Yes Yes Yes Yes No Yes Yes No Yes No No

Yes Yes Yes No Yes No Yes (T3) Yes Yes (T2) No No

Georgie

13

14

14

Lymphoma Lymphoma Hodgkin’s lymphoma Osteosarcoma Osteosarcoma Hodgkin’s lymphoma Hodgkin’s lymphoma Lymphoma Aplastic anemia Osteosarcoma Acute lymphoblastic leukemia Acute lymphoblastic leukemia

3

Yes

Yes (T1)

n/a: Not applicable; T: Time point.

The young person with aplastic anemia was included because she was attending the same in-patient and out-patient services as the other oncology patients, was being supported by the same clinical professionals and was receiving similar treatment to the other leukemia patients already included. Nine of the participants completed all three time points, eight provided visual images and eight had a parent present for at least one interview. ●●Data collection

Three interviews were planned: one within the first two months of the patient’s diagnosis of cancer, one at approximately 6 months postdiagnosis, and a final one at approximately 9 months postdiagnosis. Interviews lasted approximately 40 min (range: 9–105 min). The interviews, conducted by the first author, were each based on a photo elicitation method [33] in which photographs taken by participants were used as a stimulus to elicit accounts in subsequent interviews. Participants were asked, two weeks prior to each interview, to take photographs of objects, places or people which represented their experience of engaging with school. They were offered the use of cameras, but all opted to use their own cameras or camera phones. Ethical considerations were explained, as standard in photoelicitation studies (see [34] for discussion). Images produced were discussed using a semistructured guide based on the SHOWeD technique (e.g., [35,36]) which utilizes the following questions to explore participants’ accounts


of what they had chosen to make visible and why [37] : tell me why you chose this picture; what do you see in this picture?; what is happening in this picture?; how does this relate to your life?; what is missing from this picture?; how does this picture make you feel? The interviewer followed participant’s responses to these questions with probes intended to elicit more detail and context, such as: can you give me an example of this in relation to school?; could you tell me about a time when this was not the case?; how do you think this might have been different if you did not have cancer?; how do the people around you react to, or support you with, this? ●●Data analysis

The interviews were transcribed verbatim to play script standard. All identifying details were amended or removed, and pseudonyms were used throughout. In line with many photoelicitation studies, image content itself was not analyzed as photographs functioned to support participant engagement and interview data generation only [38–40] . Change over time was not assessed as a specific aim of the research, with the series of interviews provided by each participant used to build a coherent story of each individual’s experience of the first 9–12 months of their illness. The interview data were subjected to IPA. IPA is developing a strong presence in health psychology research given its procedural clarity and theoretical foundations (see, e.g., [41,42]). Underpinned by a view that people interpret

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Research Article Pini, Gardner & Hugh-Jones their experiences into a form that is understandable to them, IPA is well suited to capturing the interpreted and constructed nature of health, illness, and life transforming events [43–45] , as well as understanding the complexity and processes of lives in particular contexts [46] . The aim of IPA is to identify patterns in the data corpus whilst being sensitive to the individual contexts from which those patterns arise [45–47] . Procedures for IPA were followed as outlined by Smith and Osborn [46] and Smith, Flowers and Larkin [45] and included: multiple, detailed readings of transcripts; making descriptive notes (e.g., how often they attended school, or reintegration experiences/worries); generating first stage interpretive notes (e.g., the apparent importance of peers in reintegration); developing conceptual themes (e.g., ‘school identity’ was noted as a possible theme at an early stage of analysis); refining emergent themes and exploring connections between them, firstly idiographically, and then at the group level (e.g., ‘school identity’ became ‘regulation and calibration’ to better reflect the meaning within this experience across the sample). The data were then organized into a thematic framework of higher order themes and associate subthemes. To provide ongoing sensitivity to context and potential bias, and in line with good practice in IPA, the lead analyst (S Pini) engaged in depth with the process described above, with the second and third authors providing supervision, discussion of the appropriateness of thematic development and exploration of emerging models to represent the data. This process was also present during the interview process, as the interpretation of previous interviews could be incorporated into subsequent interviews so that participants would have the opportunity to verify or contradict interpretations. At the conclusion of the study, the results were fed back to participants who then had the opportunity to comment on the outcomes of the research. Results In this section one higher order theme, regulation and calibration, and six themes will be presented and discussed: the regulatory importance of exams and grading; belonging to the school community; the damaging effect of miscommunications; changing peer dynamics and norms; adapting to altered appearances; special consideration versus normality. The themes presented here are not exhaustive of the full thematic

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framework developed within this research, but are those that represent aspects of the experience that were important to the participants practically continuing with their school. Each theme is discussed with reference to key illustrative extracts sampled from the interviews. Interviews with all participants contributed to the development of themes; however, some participants accurately and concisely reflected certain themes and are, therefore, quoted more extensively. Although Alanna only participated in a single interview, her account was complex and detailed, and extracts from her interviews are regularly referred to as they nicely capture overall themes. ●●Regulation & calibration

This is a higher order theme and represents the ways in which participants talked about school as a space in which they could both regulate themselves, and calibrate their progress. Regulation, in this context, referred to the way in which participants developed and maintained ideas about different versions of themselves (as a young person, as a pupil, as a friend among others) and their behavior. Calibration was how these self-perceptions were judged against the behaviors and attitudes of others. Being able to see themselves reflected back in the reactions of peers and teachers to their behavior, opinions, appearance and achievements provided an ongoing gauge through which they could adjust their developing ideas about themselves. The need for self-calibration seemed very important postdiagnosis, where participants had begun to spend time out of school and more time in a separate medical world which did not offer them the same opportunities to understand themselves in relation to their peers. The regulation and calibration possible within the school environment developed their version of themselves as a pupil through school work, exams and school routine. Their version of themselves as a normal young person was developed and regulated through interaction with peers and the school community. Missing time from school because of illness and treatments meant that participants were not as immersed in this ongoing regulation and calibration. Some participants missed the structure that the school routine brought to their lives and how the need to attend school motivated them to be active. This regulating routine was something that participants had rarely been without before being diagnosed with cancer and when it was


Ongoing education for teenagers with cancer removed there seemed to be a loss of normality and shape to their lives. Within this higher order theme were six additional subthemes, which are presented in the following sections. ●●The regulatory importance of exams

& grading

For the majority of participants, exams and grading provided an important component of regulation and calibration within school. Participants often talked about their grades and school reports in a way that suggested these external verifications were important to regulating their developing ideas about their own abilities and calibrating their performance against their peers. In the extract from Alanna’s interview below, the continuity of her reputation in school seemed very important to her. A mistake had been made and she had received lower grades than she was expecting, but she worried about the impact this would have on how colleges or universities would read her profile: Alanna: “My grades, they’re really important to me because obviously I was starting my GCSEs that year, I started with GCSEs a year earlier, and I did my GCSEs this year so.” Interviewer: “So yeah, I mean that doesn’t make you.” Alanna: “Because if they look back on that and then saw that [bad report] and not knowing what had gone on that year thinking in year 9 ‘oh she messed about, she got messy, she was predicted an F and now a U in history’ it wouldn’t have been very fair on me.” Alanna wanted her efforts to be accurately reflected in her grades so that others would know her ability, and was concerned about the fairness of the assessment process considering her illness. Apart from regulation, fairness and reputation, participants wanted to take exams to move through the school system in a way that was normal for their age and to not fall behind their peers. Even when participants were given guarantees that they did not need to sit exams to progress to the next stage of school, they often felt that if they did not sit their exams they would have wasted previous work and the time they had invested. It also appeared difficult for participants to let go of the well-established idea that they needed to “get a good mark” (Mario). Robert echoed Alanna’s earlier concerns about ongoing reputation, but also felt that missing his exams would be taking ‘the easy option’.


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Robert: “I remember because I said this to my mum, I said ‘even though I’ve got a place I still want to get good GCSEs’ so I still revised and still tried to get at least my target grades or all passes, so above C or C and above at least.” Interviewer: “So, this might sound like a strange question but given the fact that you’ d already got your place in college, what was your motivation for still wanting to do well in your exams? Why did you still want to sort of push yourself to do well in those?” Robert: “I didn’t want to like take the easy option and just say ‘oh I’m not going to bother with my GCSEs because I’ve already got a place’, and some jobs do look back at your GCSEs whereas most people say ‘oh GCSEs don’t count for anything, it’s A levels other stuff ’, but then there are some jobs that do go back to your GCSEs to see what you did and how you went on so I thought I might as well still try at least.” Even with the removal of external pressure from professionals and parents to sit exams, participants often retained a sense of internal pressure. The desire to still sit and do well in exams reflected wanting to remain part of a system that was normal for the stage of life they were in and was an important part of who they thought they were and who they wanted to be in the future. Maintaining these ideas during a time of turbulence presented by cancer, offered participants a sense of stability and grounding by remaining engaged in normal school processes and progression. ●●Belonging to the school community

Throughout the interviews young people talked about whether they still felt part of their school community and the extent to which the school still cared about them. Feeling that they were still part of the school community enabled them to experience some continuity of experience and maintain a sense of their place within that community. Participants seemed to calibrate the level of care that they perceived from the school as a cancer patient, with what they experienced as a pupil prior to their diagnosis. If they perceived a reduction in care and contact from the school community then they could feel that they were less valued now that they could not attend as often. Participants were very sensitive to the quality of communication from schools and the extent to which they felt the school cared about what was happening to them. It was not enough for schools to have communications in


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Research Article Pini, Gardner & Hugh-Jones place to facilitate their ongoing education, the participants wanted to feel cared about and that they were still worth caring about, as Annabella pointed out when reflecting on information given to her by her school: “Well the sheet that I’ve been given has always got a contact list on. Which doesn’t really mean that they’re very helpful, it just means that they’ve got in contact!” – Annabella Some participants were keen to talk about the nice things that their school had done to show they cared about them, but for others the perceived lack of care from their school had an ongoing effect on their perception of the school. Georgie: “I don’t suppose they really care and Mr [NAME] the Head Teacher, I’ve never met him and I’ve been there for years.” Interviewer: “Okay. Would you like it if they got in touch with you more like just to see how things were going?” Georgie: “Not really because they weren’t very interested in the first place so.” There were often different states of readiness between the participant, the family, the healthcare team and the school, which could lead to frustrating and seemingly unnecessary precautions and delays in attendance from the perspective of the participants. Following her diagnosis, Hayley wanted to attend school before beginning her treatment and experiencing the associated illness and side effects, especially those associated with changes in appearance. Her school wanted to ensure that all of their staff were fully informed about Hayley’s condition and have a meeting with healthcare professionals before she returned. The resulting delay felt to Hayley as if she was being banned from the school at this time because of her illness and that being allowed to attend school for ‘just that 1 day’ was an important experience she was being denied. The warmth of welcome back into school was also discussed by participants as an important associated factor. Among all the educational practicalities and cancer related concerns and adjustments, this basic feeling of being cared about was an important factor when it was present and damaging when it was absent. ●●The damaging effect of

miscommunications

An important component of feeling an enduring sense of care coming from the school community was often experienced via the quality of communication from school. When communication

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with school was inaccurate, badly timed or absent, the negative impact on participants could be acute. Participants reported that communication with school was successful when there was one person assigned from the school to oversee the liaison with them, given that their world was now increasingly saturated with professionals, appointments and information. However, this person was often not in place. In many cases, schools were unsure of who had responsibility for the care and communication with the participant and when it was appropriate to make this contact, which resulted in gaps in their education. It often appeared that individual members of school staff took it upon themselves to contact the participant and that this was not always a systematic approach. The young people perceived that it was sometimes difficult for schools to judge when it was appropriate for the participant to attend school. Young people also felt that schools struggled to always inform all of their staff members about the health status of participants, which sometimes led to them being treated without due consideration within school. In the extract below, Nicola described an incident when her unique status as a young person with cancer within the school was not understood. She attributed this to a lack of knowledge of her individual circumstances. “I was signing in 3 minutes early and … he was having a go at me for signing in early because like I went to my registration room and no one was there and I hadn’t been there the day before and I was like, ‘oh, I don’t know where anyone is, I’ ll just go and sign in at the office’, so I went up there and it was three minutes until the buzzer was going, so he was like having a go at me for that but I think like if he knew who I actually was I think he’ d understand more.” – Nicola A major problem with communication, which manifested itself in a variety of forms across participants, was that participants and families received communications from the school that were generic and untailored to the specific situations of the participants. Hayley received a letter saying that she needed to pass five of her GCSE exams to achieve her place in college and this contradicted her previous understanding of the situation. This letter from school was unsettling for her and reapplied pressure that had previously been removed. Hayley’s mother: “We got that random letter didn’t we, saying that you needed five GCSEs.” Hayley: “Yeah, that was a bit scary!”


Ongoing education for teenagers with cancer Hayley’s mother: “So that put a lot of pressure on her because she was thinking ‘I don’t even know if I can do one, let alone five!’” Hayley: “Yeah, of C and above.” Alanna had received several phone calls, letters and text messages asking her and her parents to justify her repeated absence from school, despite the school being aware of her cancer diagnosis. Alanna also received a school report that did not show special consideration for her and was a real source of upset and anger for her and her family. In her interview, she described this situation in considerable detail and regularly used the word ‘hurt’ to describe the effect of this report. In the extract below, it was clear that the comments she reported from her teachers were not reflective of her special circumstances or the efforts she had put into engaging in her education. This extract also reiterated the importance to participants of a feeling of care coming from the school. Alanna: “But just before the meeting we got my report didn’t we? And that hurt me.” Interviewer: “Yeah, so tell me about it, I know you’ve told me before but just tell me about that again, about the report.” Alanna: “Well some of the teachers, about two or three of them acknowledged that I’ d been off school due to an illness, one of them put ‘Alanna’s not been in school due to an illness’ the other one put that I hadn’t been in so she can’t make realistic comment on my work, but then a couple of teachers didn’t put anything, they just left it blank, not even put. one of them put ‘I hope you are getting better’ not one of them. some have them had put nothing. One of them just put blankly, ‘Alanna has not attended school’. And then I’ d been, in ICT I think it was, I’ d been working at a. I did my exam, I did it in January, all through my chemo, I did it in hospital and I got a C, well they put on an expected grade for the end of the year an F!” The effect of miscommunication from school was to make the participants feel that they were forgotten about, and that the school was not giving enough time and attention to their situation to make the necessary allowances for their illness. As illustrated by Alanna in the extract above, there was also a sense that the young people and their families were coping with significant difficulties and that they would expect this to be considered by the school and not exacerbated by them. ●●Changing peer dynamics & norms

The normative issue that was most often discussed by participants was the impact that cancer


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had on their peer groups and the role that peer groups played in their school engagement. Peers provided the most important and fundamental part of participants’ development and regulation of ideas about themselves, and calibration of their relative place and value within their community. Peer groups and sometimes an identified best friend, were often important factors in the confidence participants had about reintegrating into school. Belonging to a strong peer group seemed to provide participants with a protective environment, where they could feel safe, welcome and normal when returning to school. However, when this was not available it could have a detrimental effect on participants, as seen in the extract below from Hayley. The absence from school of her best friend on the day that she had planned to return to school was a strong enough factor that she felt, not only less confident in returning to school, but that it was not possible for her to return on that day. It seemed that Hayley viewed her reintegration as a shared experience between her and her best friend, and something that they would go through together. “Well I was going to go in about two weeks after but [Name] said, my best mate [Name], she was ill that day, it just like. Oh! I was so upset because I was going to. I’ d properly prepared myself that I was going to go in, I was going to wear my wig, I was going to be there with [Name], you know ‘ it’s going to be fine’, and then she said she wasn’t going in and it was like ‘oh, right OK, I can’t go in’ because yeah, I just needed her there! To be able to give me that confidence, because she’s in a lot of my lessons as well so she’s just. she’s the strong one really! But I couldn’t have gone in without her so I think I just stressed myself out so much, I didn’t sleep or anything, I just felt so ill. I think I was making myself ill just thinking about having to go in on my own. But yeah, so I ended up not going in.” – Hayley Almost unanimously participants reported that seeing friends was the main factor that they were looking forward to when reintegrating into school. Maintaining relationships outside of the school environment was difficult for participants. Peers often found it difficult to visit participants in hospital because of time commitments, travel and the wishes of participants to not be seen in hospital. When participants were at home and therefore not in the school or hospital environments, cancer related issues, such as fatigue and infection risks, often encroached on their attempts to engage with their peers, as seen in the extract below from Mario:


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Research Article Pini, Gardner & Hugh-Jones Interviewer: “…does [infection risks] stop you going to other places like I don’t know, like friends or family or visiting other people?” Mario: “Usually not because I just try and like keep away from the person who is ill but if they’re like ill I wouldn’t go and visit them so.” Mario’s mother: “I’ d say you are kept away from people an awful lot. I’ d say it has affected you in that way. Because normally his friends are really really cautious of his. I know you’ve turned people down saying not to come and visit because he’s really really cautious of that…” Interviewer: “Yeah. So, would you say that’s true?” Mario: “Yeah, it is.” The needs they had as a young person with cancer often provided a new framework within which peer interactions had to occur. The extract from Alanna showed that there was a divide between her and her peers in terms of knowing the rules to this new framework for interaction. Alanna was confident enough to take charge of this divide, but other participants did not always feel so comfortable. “No because it’s like, I’ ll say to them, ‘ if you’ve got a cold just sit a little bit away from me’ or I’ ll say ‘ don’t be offended, but I’ve still got a low immune system remember’.” – Alanna Participants regularly described using social media as a way to keep in contact with their peers that did not involve attending school, or peers visiting them at home or in hospital. However, it seemed that the type of interaction that was possible at school was not really achievable through interactions over social media and that the face-to-face contact with peers was still a void in their lives. “I still talk on Facebook and text and WhatsApp and all that. It’s not the same as seeing them and talking to them properly.” – Alanna When there were prolonged periods of absence from school, participants often worried about how they would reintegrate into their peer group. This was a complex concern, but often stemmed from a realization that their cancer experiences had changed their perspective on the normative priorities and worries involved in being a young person. This change in perspective was not something that they perceived had happened for their peers, so there was often anxiety about how this would manifest itself on their reintegration. Hayley described an argument between her friends about which restaurant to go to and how she felt like this was not important

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and that her attitude towards this type of issue had changed during her cancer experiences. It seemed that participants found their reintegration into their peer group was complicated by trying to return to a previously shared concept of what was normal, but with new experiences that made it more difficult to readjust back to this shared concept. Hayley: “The last thing they said to each other was ‘I never want to speak to you again’ and I was like ‘there’s bigger things to worry about than Nando’s, you don’t have to make like a lifelong feud between yourselves’.” Interviewer: “Do you think you think differently about that kind of thing now having been through the things you’ve been through in the last year?” Hayley: “Oh, yeah.” Although some of the issues about peer relationships were complicated, for some participants the problem with being isolated from their peer group was as simple as missing their friends and feeling lonely without them. This was exacerbated by education situations like home schooling, which although often helpful and necessary, were in themselves isolating. In addition to the difficulties, simple or complicated, experienced by participants in their relationships, there were also positive impacts that cancer could make on relationships with family and friends. Some participants reported that their cancer experiences had brought them closer to friends and/or family members. This was often because friends and family had made more effort to see them due to their health situation and to offer the support they required, and that this extra time spent together had improved their relationships, as discussed by Robert: “…not just family as well, it’s also my friends from like my swimming club. They’re always like ‘will you come out and catch up?’ so it’s really brought loads of friendships and family together.” – Robert Apart from extra time, participants often talked about feeling cared for and the positive impact that had on their ongoing relationships. It also seemed that peers, through having to consider the new difficulties experienced by their friend with cancer, had become more empathetic and this had improved some relationships. ●●Adapting to altered appearances

Alterations to the physical appearance of participants were regularly cited as a cause for concern when reintegrating into school. Physical


Ongoing education for teenagers with cancer appearance was a clear intrusion of cancer into the normal and school lives of participants, which was challenging for them to mask if they wanted to and difficult not to project their anxiety onto others. School was an environment where physical appearance seemed to be in much sharper focus than in the environments of home, hospital or community. This sharp focus heightened the difficulties and anxiety experienced by participants when calibrating their appearances with the reactions of peers and professionals. The issue of wearing wigs or hats when reintegrating was difficult for some participants, who were often concerned about how realistic wigs appeared and whether teachers and pupils would draw attention to them or try to remove these items. Participants again varied in how they coped with these physical changes, with some wanting to avoid reintegrating into school altogether until issues had resolved and others seeing it as a challenge and an opportunity to demonstrate their confidence and positive coping. In the extract below, Georgie thought it would be inevitable that others would wonder if she was wearing a wig. This perception was not based on any previous experiences or comments and seemed more a projection of her own anxiety about how authentic and convincing her wig appeared. Georgie: “…people obviously are going to say ‘oh I wonder if she’s got a wig on’ because everybody would do that, I’ d do that, just wonder.” Interviewer: “Yeah, so you think people would be wondering if you’ve got a wig on?” Georgie: “They’ d wonder, wonder, I would wonder.” Robert had a similar perception that it would be ‘obvious’ that somebody would say something to him about his hat, but this only seemed to be a concern for him within school when he was not protected by his friends or people who knew about his health situation. However, despite his initial concerns about the reactions of peers at time-point one, Robert embraced his status as a young person with cancer and was ‘proud to be bald’ by time-point three. “At home I don’t wear a hat because obviously I don’t feel the need to but in school. sometimes in lessons I’ ll take it off because I’m surrounded by my friends and like people who know about it, but I won’t walk around the corridor with no hat on because I know that someone will obviously say something and if they did yeah, I’ d be like ‘fine, whatever’ but if it carried on I think it would eventually start bothering me.” – Robert


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Outside of the issue of hair loss, participants had interesting perspectives on the adaptations they needed to use as they reintegrated into school. They often worried about how others would perceive these adaptations, not simply in how they looked, but also in whether they were justified. This concern was primarily related to adaptations for mobility issues. In the extract below, Nicola worried that her intermittent need for the support of crutches would be perceived by her peers as attention seeking behavior because there was no externally obvious need for them. “The crutches I guess because like I don’t have my leg in a pot or anything, and it doesn’t look like I’ve broken it and like I’m still walking on it but I’m taking weight off it but then like sometimes I can just dump my crutches down and I’ ll walk, so then I think people are like, ‘what an attention seeker!’ kind of thing.” – Nicola How participants felt about their appearance and how they imagined the perception of others was an important part of calibration of themselves within school. Trying to reintegrate into an environment where they had previously established a view of themselves was challenging and external signs of cancer made it more difficult to simply return to how and who they had been before. For some this made them stay away from school, whereas others were more able to accept and integrate these changes. ●●Special consideration vs normality

A fundamental concept that appeared to underpin some of the difficulties expressed by participants was the tension between the desire to be treated normally and the need to have special consideration. The calibration of the new elements of their physical, psychological and emotional make-up against their previously experienced ideas about normality could result in tension and inconsistencies in the way they wanted and expected others to respond to them. Participants in this study often expressed wanting to be treated normally when returning to school, but then found it difficult, frustrating or upsetting when their cancer experiences were not taken into account and adjustments were not made in the way they were treated. However, the participants often moved between the two ends of this scale at different times, with different people and in different environments, sometimes simultaneously wanting to be treated normally like any other young person, but also considerately as a young person with cancer. The


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Research Article Pini, Gardner & Hugh-Jones fluidity of the positioning of young people on this scale seemed to be connected to which version of themselves they perceived to be dominant at the time. The extracts below from Alanna and Nicola typified the desire not to be treated differently, but at the same time to be treated with consideration. “I wanted them to not be exactly the same with me, I wanted them to sort of. sort of be responsible, normally they’re quite crazy and weird. Like not feel sorry for me or anything but be more thoughtful but still be their normal selves.” – Alanna “I don’t want people to treat me differently but I’ d rather them know so they’re not like aggressive with me kind of thing and they don’t knock me.” – Nicola When reintegrating into school, participants seemed to find it difficult when school staff did anything to highlight them as different from other young people in school in front of their peers. For example, when Hayley was learning about cancer in a science lesson, the teacher was unsure how to cope with this in relation to her status as a young person with cancer and this was difficult for both of them. The teacher tried to acknowledge the situation by asking her for help with the subject matter, but this brought Hayley’s cancer into the foreground in an area where she wanted it be in the background or not present at all. Hayley: “Yeah, it’s like ‘ if there’s anything that I’m saying wrong just tell me and I can like adjust it’ and I was like ‘oh OK, I don’t really know what!’” Hayley’s mother: “I think he’s finding it harder than anybody isn’t he? Because he’s. I think he’s scared of saying something that’s going to hit a nerve and maybe upset her.” Hayley: “Like he’ ll say stuff and then he’ ll like go really quiet or like start stuttering, it’s awful! ‘Please don’t you are making it worse! Just stop it!” Interviewer: “So you think that he’s nervous about saying the wrong thing.” Hayley: “Yeah.” Hayley’s mother: “He’s very aware of your presence isn’t he?” Hayley: “Yeah (inaudible) ‘stop it’s getting worse!’” Hayley’s mother: “And you sit right at the front of the class with him and it’s like!” Despite the overall desire of participants to be treated as normal, their situations often necessitated some form of practical special considerations, like being allowed to work in different

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areas of the school, having classes moved to new locations or being able to wear different clothing. This type of practical special treatment rarely resulted in any problems for participants when it was addressed in private and planned in advance. In some cases it was seen as a privilege or an appropriate and welcomed consideration. In the extracts below, Nicola and Robert both reported examples of these practical allowances. Nicola seemed to appreciate having a separate area to work in that she had some control over. Robert realized that the allowances made for him were different from those of fellow students. “My senior tutor has also offered me like his room that I can like just go in there and I can work in the corner because there’s like this corner bit and it’s like away from the classroom and he says I can work in there … I can bring friends in there as well.” – Nicola ”On some occasions I was allowed to wear jacket over if I did feel cold whereas other students couldn’t do that.” – Robert There was variability in the extent to which the extra attention received as a young person with cancer was a positive or negative experience. It was true that some participants found being brought into the foreground embarrassing and difficult to cope with, whereas, others seemed to thrive in the increased attention. Alanna seemed to thrive in the extra attention received from peers, and most of this attention was positive. The extract below showed that her peers enhanced her belief that she was ‘strong’ and was coping successfully with her situation. Alanna: “A lot of people from my school are like. I wouldn’t know them, well I’ d know who they were because I’ve talked to them a few times, but they’ d like. they’ d message me on Facebook saying ‘you are really strong and courageous doing this and you are a role model’ and everything like that.” Interviewer: “And these were kind of people your age at school?” Alanna: “Yeah, people my age at school that.” Alanna’s dad: “Not sort of friends.” Alanna: “Not my friends, no, not people that I’ d talk to most of the time, just people that I’ d, you know, met once or twice and talked to them and knew who they were, and they just messaged me saying ‘you are really. you make us proud’ and things like that, I mean really nice.” Interviewer: “So how did that make you feel then? Getting that kind of contact from people?” Alanna: It was really. I. It was really nice, it. for people that you don’t know, so they don’t know


Ongoing education for teenagers with cancer how you are and they’re saying that ‘you are really strong doing this’ it makes you really. It makes you smile a lot!” Even when special consideration was positive, several participants expressed a level of cumulative fatigue in this area, regardless of how well they understood the reasons and positive intent behind it. Robert had previously expressed this in relation to receiving questions from peers and telling them about his diagnosis, and this was a consistent feeling for him. Even William, who had been very relaxed about his cancer experiences in relation to school, expressed this sense of cumulative fatigue with people checking on him. “It was quite, not annoying but, I don’t know, you just kind of wanted to be left alone sometimes and they were always asking, I don’t know, like yeah, always like making sure you’re okay, which is a good thing but it just, after a while it kind of gets a bit, I don’t know, like the everyday thing.”– William The participants in this research have highlighted seven important areas in their experience of school following a cancer diagnosis. Understanding these areas and how they interact is important to the development and provision of support to young people trying to navigate through a difficult and complex time in their lives. Discussion The use of the visual interview method within this research allowed for a truly participant-led account of the experiences of teenagers, which is an important addition to the evidence base. Taking photographs prior to the interview allowed participants to engage with the research area in advance and really think about what elements of their experience they wanted to discuss. This approach also reduced the power differential between researcher and participant, by giving participants control over the structure and initial starting points of the topics discussed within the interview. It appeared that regular caring and informed communication from their school was the significant factor in whether participants thought their school support was adequate and whether they wanted to engage in what was being offered. This was often a good indicator that their regular school was still coordinating their education and supporting the hospital- and home-based school professionals. Communication with their regular school was certainly important for


Research Article

participants and this research would suggest that waiting until they are well enough to learn is not as beneficial as immediate and ongoing contact following diagnosis. The sense that a participant had about the amount they were cared for by their school and how much they felt they still belonged to the school community, seemed to be an important factor in their successful ongoing engagement with school. This is in keeping with research into well-being and education, which shows that the school community could be very important to the well-being of young people [48] . Being valued as part of a school community and enhancing the well-being of young people has also been shown to be positively linked to school attainment [49,50] . The current study adds to this understanding by showing that the feeling of school community is influenced by the quality, content and frequency of communication from school during periods of absence. Many studies have shown the moderating effect on reintegration of good communication between schools, medical practitioners and young people and their families [12,14–15] . However, findings from the current study suggest that clear and appropriate communication from school about academic issues, alongside caring communication about the health situation of participants, was a combination that strongly facilitated continuing school engagement through making the young person feel wanted by the school community. Miscommunications made the participants feel uncared for and, along with their absences, further reduced their sense of belonging to this community and their likelihood of engaging with their school. In support of this point, previous research has shown that when young people in education feel their needs are being supported by significant others (parents and teachers), they were more autonomously motivated in their academic environments [51] . The article by Moore [15] and my own article [11] have suggested that a specialist education worker could facilitate these communications, but the experiences of participants, who all had access to the support of a specialist learning mentor, suggest that this is only part of the solution. It seemed that where the school identified one member of staff to be the main source of communication, and who already had a good relationship with the young person and their family, then participants had a better experience of communicating with their school. The current study did agree with the study by Moore [15] , which showed that school staff were


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Research Article Pini, Gardner & Hugh-Jones not always clear about what support they should offer young people and the best timing of this support. However, more understanding was given to this issue through the discussion of an evershifting dynamic between normality and special consideration that made delivering the right support, at the right time, very complicated. Normality is a concept that is regularly discussed as essential in relation to the psychosocial care of teenagers with cancer [52,53] and Sharma described “the primary goal for adolescents with cancer is to be as normal as possible” (p. 103) [54] . For participants, in relation to their ongoing engagement with school, but also their wider experiences spanning their time in the research, it seemed that the desire to be “as normal as possible” fluctuated significantly and was not always the primary goal. At different times, with different people and in different contexts participants described desiring normality, but also wanting to be treated with special consideration, sometimes simultaneously and often changing their position over short periods of time even within the same context. Academic achievement had been the quantitative outcome measure of several previous studies in this area. This research did not specifically assess academic performance, but the reflections of participants who had received their GCSE results suggested that their academic performance, as indicated by their grades, had been adversely affected by their cancer and treatment. However, despite the appearance of a reduction in academic achievement, if a correlation between absences and a reduction in academic performance could be established and consistently demonstrated, this research shows that it would need to be assessed in relation to a wide variety of other potentially influencing factors. The intensity and frequency of coinciding medical events will clearly account for some variability in academic achievement during this time. However, it seems that the extent a young person still feels part of their school community and the quality of communication with school whilst they are away are a more important factor than the number of days absent from school. Also, how the young person experiences changing peer group dynamics will impact the amount they attend school, feel part of the community and ultimately engage with their schooling, all of which are problematic to assess through quantitative approaches. The findings of this research would suggest that a quantitative assessment of the impact of absence from school on academic performance for this

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population is excluding the nuances necessary to fully understand the complex nature of the school experiences of teenagers with cancer. It seems clear from participants in this and previous research that peers are a vital component in the school and wider health and social experiences of young people with cancer. The maintenance of peer groups appeared to be an important factor for young people, a facilitator in successful engagement with school, but also an outcome of successful ongoing school engagement. Peer groups and school engagement seem to be so tightly linked that it is difficult to assess a clear cause and effect, that is, do peer groups help maintain school engagement or does school engagement help maintain peer groups? The evidence so far would suggest that it appears to be a perpetual cycle of mutual reinforcement, which can be easily disrupted by a significant event like a diagnosis of cancer and the change in dynamic that cancer brings to both peer groups and school engagement. ●●Recommendations for developing school

support services for teenagers with cancer

There are many examples within this, and previous, research of areas of school support that could be improved for this group of young people. The participants in this research were not specifically asked for recommendations for improving services, but their stories have greatly influenced the recommendations offered here. In the list below we offer a set of recommendations for the ongoing school support for teenagers following a diagnosis of cancer. These recommendations have been developed from the findings presented in this study, other linked research from the authors that is currently in press, or has been previously published [9,11,13] . ●● Education issues should be addressed as close to diagnosis as is reasonable in the individual circumstances; ●● It should not be assumed by anybody involved

that education is no longer an important or relevant issue to a young person after a diagnosis of cancer; ●● Young people should be given the option to be

involved in every decision made about their education, health and social life, and be guided as to how they could exert influence – that is, give them examples; ●● The maintenance of peer groups should be

encouraged and facilitated by schools, parents


Ongoing education for teenagers with cancer and hospital staff, who need to work with the young person to break down logistical, social, health and personal barriers to peer interactions; ●● Young people should be advised and supported

about how and when to share their cancer diagnosis and experiences with others and how to cope with the ramifications of this telling; ●● Peers should be offered information and guid-

ance about how and when to best offer support to the young person with cancer; ●● Schools need to be flexible in reorganizing the

young person’s education timeline to allow them to progress with their peers, if this is what they want; ●● Schools should be aware of the individual and

fluctuating nature of the young person’s need for special consideration and normality, and should work closely with the young person, parents and healthcare staff to monitor this shifting balance and achieve the best situation possible; ●● Immediately after diagnosis, schools should

be advised to nominate a single member of staff with an existing good relationship with the young person and family to be their main contact for all communication, questions and logistics. All communication from the school to the young person should go through this member of staff to minimize the risk and potentially damaging effect of miscommunications; ●● Schools should value, encourage and facilitate

the young person’s ongoing involvement in school work and exams through regular communication with the hospital school and home schooling services, but also with the young person and their family; ●● Schools should be advised to demonstrate

ongoing care and concern for the young person regardless of their ability to attend school and be encouraged to involve the young person in as many aspects of the school as they are able to participate in, so that they can still feel part of the school community; ●● A specialist education worker should be avail-

able to all young people with cancer and this person should have a job description that allows them to support psychosocial as well as academic issues;


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●● The intersecting experiences of school, cancer

and adolescent development are complicated and individual and therefore schools, healthcare professionals, parents and peers should be advised to be as flexible as possible in addressing the individual needs of the young person. Future perspective The area of providing school support to teenagers with cancer is at an early stage in terms of research and clinical practice. There are centers where support is being provided and there are examples of good practice. However, I think there is a great need to integrate school support into the multidisciplinary clinical and psychosocial support services offered to teenagers, their families, peers and schools. The clear impact that the school environment has on the development of young people’s view of themselves and the important link between school and peers make it an essential area to focus support. Developing new and appropriate ways to support these young people would be greatly enhanced through more in depth and nuanced qualitative research with young people and the people that support them, and to disband efforts to find quantitative effects and outcomes within this field. This approach to research could lead to the development of resources, systems, guidelines and documentation that are accurate, appropriate to the needs of the young people because the experiences of young people will be at their core. Over the next 5–10 years, I would like to see the list of recommendations provided in this paper become obvious and obsolete because of the development of caring and flexible school support to teenagers with cancer around the world. Acknowledgements This research builds on the work carried out in the authors’ doctoral thesis, which was completed at the University of Leeds [55] .

Financial & competing interests disclosure The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties. No writing assistance was utilized in the production of this manuscript.


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Research Article Pini, Gardner & Hugh-Jones Executive summary Background ●●

ontinued engagement with school is important to teenagers after a diagnosis of cancer, and not just when they have C completed their treatment.

●●

T here has been very limited research conducted to investigate how teenagers experience their ongoing engagement with school during treatment, and what elements of this experience are important to them.

●●

esearch attempting to find quantitative connections between school absences and academic outcomes have R produced very inconsistent findings.

Method ●●

T his research was a longitudinal, photo elicitation study with interviews over three time points with 12 teenagers during the year following diagnosis.

●●

articipants took photographs in the 2 weeks leading up to the interview of anything that they felt was important in P their current experience of school. These photographs were used as stimuli to facilitate discussion of their experiences.

●●

Interview transcripts were analyzed using interpretative phenomenological analysis.

Results ●●

This paper presents one higher order theme and six subthemes.

●●

Regulation and calibration: ūū

●●

The regulatory importance of exams and grading: ūū

●●

T his subtheme represents the impact that being away from school because of cancer treatment can have on the way that a young person relates to their peer group, and how their ideas about norms do not always match.

Adapting to altered appearances: ūū

●●

T his subtheme details the impact on a young person of receiving communication from school that has not taken account of their cancer diagnosis.

Changing peer dynamics and norms: ūū

●●

T his subtheme represents the benefit that a young person experiences from feeling like a valued member of the school community and that the school still cares about them.

The damaging effect of miscommunications: ūū

●●

T his subtheme represents the continued importance of exams and grading to the idea that a young person has about themselves.

Belonging to the school community: ūū

●●

T his is higher order theme represents the ways in which participants talked about school as a space in which they could both regulate their developing ideas about themselves, and calibrate their progress against that of their peers and the expectations of others and themselves.

T his subtheme details how young people conceptualize and cope with returning to school with an altered physical appearance.

Special consideration vs normality: ūū

T his subtheme relates to the tension between wanting to be treated normally and needing/wanting special consideration because of their cancer diagnosis.

Discussion ●●

egular, caring and informed communication from their school was the significant factor in whether participants R thought their school support was adequate and whether they wanted to engage in what was being offered. Executive summary

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Ongoing education for teenagers with cancer

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Executive summary (cont.) Discussion (cont.) ●●

Waiting until a young person is well enough to learn is not as beneficial as immediate and ongoing contact following diagnosis.

●●

lear and appropriate communication from school about academic issues, alongside caring communication about the C health situation of participants, was a combination that strongly facilitated continuing school engagement through making the young person feel wanted by the school community.

●●

quantitative assessment of the impact of absence from school on academic performance for this population is A excluding the nuances necessary to fully understand the complex nature of the school experiences of teenagers with cancer.

●●

eer group maintenance and school engagement appear to be a perpetual cycle of mutual reinforcement without a P clear cause and effect.

●●

A list of 13 recommendations for practice were offered by the research team.

Ethical conduct of the research The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all

References 1

CRUK. www.cancerresearchuk.org

3

TCT. Teenage Cancer Trust: Facts and Statistics (2011). www.teenagecancertrust.org

4

5

6

7

8

Nursing and Allied Health Professionals Research, Institute of Child Health, Great Ormond Street Hospital (2005). www.kcl.ac.uk

Brierley R, Holmes D, Ceschia A et al. Teenage Cancer Trust: pursuing equality. Lancet Oncol. 10(5), 455–458 (2009).

2

Basta N, James P, Gomez-Pozo B, Craft A, Norman P, Mcnally R. Survival from teenage and young adult cancer in Northern England, 1968–2008. Pediatr. Blood Cancer 61(5), 901–906 (2014) Keegan TH, Ries LA, Barr RD et al. Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults. Cancer (2016). Gibson F, Aldiss S, Horstman M, Kumpunen S, Richardson A. Children and young people’s experiences of cancer care: a qualitative research study using participatory methods. Int. J. Nurs. Stud. 47(11), 1397–1407 (2010). Tsangaris E, Johnson J, Taylor R et al. Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review. Support Care Cancer 22(4), 947–959 (2014). Gibson F, Richardson A, Hey S, Horstman M, O’Leary C. Listening to children and young people with cancer. London: Centre for


human or animal experimental investigations. In addition, for investigations involving human subjects, informed consent has been obtained from the participants involved.

9

Pini S, Gardner P, Hugh-Jones S. The impact of a cancer diagnosis on the education engagement of teenagers – patient and staff perspective. Eur. J. Oncol. Nurs. (2012).

10 Harris MS. School reintegration for children

and adolescents with cancer: the role of school psychologists. Psychol. Sch. 46(7), 579–592 (2009). 11 Pini S. Education mentoring for teenagers and

young adults with cancer. Br. J. Nurs. 18(12), 1316–1319 (2009). 12 Searle NS, Askins M, Bleyer W.A. Home-

bound schooling is the least favorable option for continued education of adolescent cancer patients: a preliminary report. Med. Pediatr. Oncol. 40(6), 380–384 (2003). 13 Pini S, Hugh-Jones S, Gardner PH. What

effect does a cancer diagnosis have on the educational engagement and school life of teenagers? A systematic review. Psychooncology 21(7), 685–694 (2012). 14 Mitchell W, Clarke S, Sloper P. Care and

support needs of children and young people with cancer and their parents. Psychooncology 15(9), 805–816 (2006). 15 Moore JB, Kaffenberger C, Goldberg P,

Kyeung Mi Oh, Hudspeth R. School reentry for children with cancer: perceptions of nurses, school personnel, and parents.

J. Pediatr. Oncol. Nurs. 26(2), 86–99 (2009). 16 Decker CL. Adolescents with cancer: Social

support, family environment, and coping. Dissertation Abstracts International Section A (2005). 17 Duffey-Lind EC, O’Holleran E, Healey M,

Vettese M, Diller L, Park ER. Transitioning to survivorship: a pilot study. J. Pediatr. Oncol. Nurs. 23(6), 335–343 (2006). 18 Hokkanen H, Eriksson E, Ahonen O,

Salantera S. Adolescents with cancer: experience of life and how it could be made easier. Cancer Nurs. 27(4), 325–335 (2004). 19 Palmer L, Erickson S, Shaffer T, Koopman C,

Amylon M, Steiner H. Themes arising in group therapy for adolescents with cancer and their parents. Int. J. Rehabil. Health 5(1), 43–54 (2000). 20 Bonneau J, Lebreton J, Taque S et al. School

performance of childhood cancer survivors: mind the teenagers! J. Pediatr. 158(1), 135–141 (2011). 21 Koch SV, Kejs AM, Engholm G, Johansen C,

Schmiegelow K. Educational attainment among survivors of childhood cancer: a population-based cohort study in Denmark. Br. J. Cancer 91(5), 923–928 (2004). 22 Dieluweit U, Debatin K-M, Grabow D et al.

Educational and vocational achievement among long-term survivors of adolescent cancer in Germany. Pediatr. Blood Canc. 56(3), 432–438 (2011).


10.2217/fon-2016-0074

Research Article Pini, Gardner & Hugh-Jones 23 Thompson AL, Christiansen HL, Elam M

et al. Academic continuity and school reentry support as a standard of care in pediatric oncology. Pediatr. Blood Canc. 62(S5), S805–S817 (2015). 24 Northman L, Ross S, Morris M, Tarquini S.

Supporting pediatric cancer survivors with neurocognitive late effects a model of care. J. Pediatr. Oncol. Nurs. 32(3),134–142 (2014). 25 Bruce BS, Newcombe J, Chapman A. School

liaison program for children with brain tumors. J. Pediatr. Oncol. Nurs. 29(1), 45–54 (2012). 26 Shaw SR, Glaser SE, Ouimet T. Developing

the medical liaison role in school settings. J. Educ. Psychol. Cons. 21(2), 106–117 (2011). 27 Mcloone JK, Wakefield CE, Butow P,

Fleming C, Cohn RJ. Returning to school after adolescent cancer: a qualitative examination of Australian survivors’ and their families’ perspectives. J. Adolesc. Young Adult Oncol. 1(2), 87–94 (2011). 28 Taylor RM, Pearce S, Gibson F, Fern L,

Whelan J. Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis. Int. J. Nurs. Stud. 50(6), 832–846 (2013). 29 Woodgate RL. A review of the literature on

resilience in the adolescent with cancer: part II. J. Pediatr. Oncol. Nurs. 16(2), 78–89 (1999). 30 Langeveld NE, Stam H, Grootenhuis MA,

Last BF. Quality of life in young adult survivors of childhood cancer. Support Care Cancer 10(8), 579–600 (2002). 31 Barrera M, Shaw AK, Speechley KN,

Maunsell E, Pogany L. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer 104(8), 1751–1760 (2005). 32 Freyer D. Care of the dying adolescent:

Special considerations. Pediatrics 113(2), 381–388 (2004). 33 Harper D. Talking about pictures: a case for

photo elicitation. Visual Studies 17(1), 13–26 (2002).

10.2217/fon-2016-0074

34 Wiles R, Prosser J, Bagnoli A et al. Visual

ethics: ethical issues in visual research. (2008). http://eprints.ncrm.ac.uk 35 Keller C, Fleury J, Rivera A. Visual methods

in the assessment of diet intake in Mexican American women. West. J. Nurs. Res. 29(6), 758–773 (2007). 36 Johnson CM, Sharkey JR, Dean WR,

Mcintosh WA, Kubena KS. It’s who I am and what we eat. Mothers’ food-related identities in family food choice. Appetite 57(1), 220–228 (2011). 37 Radley A, Taylor D. Remembering one’s stay

in hospital: a study in photography, recovery and forgetting. Health 7(2), 129–159 (2003). 38 Mandleco B. Research with children as

participants: photo elicitation. J. Spec. Pediatr. Nurs. 18(1), 78–82 (2013). 39 Walton G, Niblett B. Investigating the

problem of bullying through photo elicitation. J. Youth Stud. doi:10.1080/13676261.2012.73 3810 (2013) (Ahead of print). 40 Wells F, Ritchie D, McPherson A. “It is life

threatening but I don’t mind.” A qualitative study using photo elicitation interviews to explore adolescents’ experiences of renal replacement therapies. Child Care Health Dev. 39(4), 602–612 (2012). 41 Hearn JH, Cotter I, Fine P, A. Finlay K.

Living with chronic neuropathic pain after spinal cord injury: an interpretative phenomenological analysis of community experience. Disabil. Rehabil. 37(23), 2203–2211 (2015). 42 Beestin L, Hugh-Jones S, Gough B. The

impact of maternal postnatal depression on men and their ways of fathering: an interpretative phenomenological analysis. Psychol. Health 29(6), 717–735 (2014). 43 Brocki JM, Wearden AJ. A critical evaluation

of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychol. Health 21(1), 87–108 (2006). 44 Smith JA. Reflecting on the development of

interpretative phenomenological analysis and its contribution to qualitative research in


psychology. Qualitat. Res. Psychol. 1(1), 39–54 (2004). 45 Smith JA, Flowers P, Larkin M. Interpretative

Phenomenological Analysis: Theory, Method and Research. Sage, London, UK (2009). 46 Smith JA, Osborn M, Smith J. Interpretative

phenomenological analysis. Qualitative psychology: A Practical Guide to Research Methods 51–80 (2003). 47 Smith JA. Beyond the divide between

cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol. Health 11(2), 261–271 (1996). 48 Ahmavaara A, Houston DM. The effects of

selective schooling and self concept on adolescents’ academic aspiration: an examination of Dweck’s self theory. Br. J. Educ. Psychol. 77(3), 613–632 (2007). 49 Bonell C, Farah J, Harden A et al. Systematic

review of the effects of schools and school environment interventions on health: evidence mapping and synthesis. Public Health Res. doi:10.3310/phr01010 (2013) (Epub ahead of print). 50 Bonell C, Humphrey N, Fletcher A, Moore L,

Anderson R, Campbell R. Why schools should promote students’ health and wellbeing. BMJ 348 (2014). 51 Chirkov VI, Ryan RM. Parent and teacher

autonomy-support in russian and us adolescents common effects on well-being and academic motivation. J. Cross Cultural Psychol. 32(5), 618–635 (2001). 52 Grinyer A. The biographical impact of

teenage and adolescent cancer. Chronic Illness 3(4), 265–277 (2007). 53 Lewis IJ. Cancer in adolescence. Br. Med.

Bull. 52(4), 887–897 (1996). 54 Shama W, Lucchetta S, Shama W, Lucchetta

S. Psychosocial issues of the adolescent cancer patient and the development of the Teenage Outreach Program (TOP). J. Psycho. Oncol. 25(3), 99–112 (2007). 55 Pini S. The education engagement, coping and

well-being of teenagers with cancer [PhD thesis]. The University of Leeds, UK (2014).
