Returning to School After Adolescent Cancer: A Qualitative Examination of Australian Survivors' and Their Families' Perspectives

Participants

Eligible patients were all those who: (1) underwent cancer treatment during adolescence (12–18 years old) at Sydney Children's Hospital in Australia between January 2007 and January 2010; (2) had completed their cancer treatment protocol with curative intent; (3) were less than five years post-treatment; and (4) continued their school education upon treatment completion. Eligible patients' parents and siblings were also invited to participate. Siblings were required to be a minimum of 12 years of age at the time of the study interview.

Data collection

A purposively designed, semi-structured interview schedule was developed using an iterative process among a multidisciplinary research team consisting of a pediatric oncologist, two research psychologists, a behavioral scientist, and a senior pediatric oncology social worker. Pilot testing with two consumer representatives followed and the interview schedule was modified accordingly. Interviews were conducted individually over the telephone, with the exception of one mother–father pair and one father–son pair who chose to be interviewed together in person. All interviews were conducted by the lead author (JKM) (see Table 1 for sample questions). As prescribed in Miles and Huberman, ³³ results from early interviews were used to prompt additional lines of questioning in subsequent interviews. Data were collected as part of a larger study which also explored adolescents' psychosocial and health-related decision-making experiences post-treatment; however, only around one-third of responses are reported here (those directly related to participants' school reintegration). The study received Institutional Ethics approval.

Data analysis

In accordance with gold standards of qualitative research methodology, ³³ interviews were recorded, transcribed verbatim, and then coded line-by-line. Fifteen percent of interviews (n=10) were coded independently by two investigators (JKM and CEW) in order to establish a coding structure and inter-coder reliability. All instances of inter-coder differences were reviewed and if consensus could not be achieved, the passage was referred to the team for further discussion. This multilevel consensus coding method has been applied in multiple research arenas^34,35 and meets accepted standards. ³⁶ All subsequent interviews were coded independently by either JKM or CEW. Qualitative data analysis software (QSR NVivo 8.0) was used to facilitate the thematic organization of responses during the coding process. Emergent themes were then cross-tabulated with participant characteristics to develop a more nuanced understanding of participants' school re-entry experience, and counts were used to moderate researcher bias. An inductive approach to analysis was taken. Demographic data were collected immediately following the interview using a verbally administered questionnaire and clinical data were obtained from medical records.

Physical symptoms

Fatigue was the most cited physical factor impacting survivors' return to school, with many adolescents struggling to complete a full day or full week (17/22 families). Fatigue necessitated that more than one-third of survivors “eased back into it” over a period of time (8/22). While fatigue was relatively short-lived in three cases (lasting less than one month), more often participants reported that fatigue continued for an average of 12 months (10/22).

Physical complaints such as nausea or vomiting were less common (6/22 and 2/22, respectively). Mobility and/or disability issues (e.g., foot drop, prosthetics) created difficulties when survivors were required to walk between classrooms or participate in physical education (5/22). In one case, traveling between classrooms was so difficult the survivor was forced to change schools. Difficulties concentrating in class were also reported by survivors (9/19); not surprisingly, the inability to concentrate was at times related to fatigue, nausea, or pain. Traveling to school was also difficult for five survivors who did not feel physically confident using public buses; these students required a parent to take them to and from school.

Psychological symptoms

Two-thirds of survivors experienced considerable anxiety during the school re-entry period (14/22; reported by nine survivors, eight mothers, and three fathers). For some, school examinations were seen as especially daunting and stressful; survivors were unsure of their current level of ability and the extent of exam content they had missed. For others, a more general sense of anxiety was described, with many feeling overwhelmed by the need to catch up on vast amounts of knowledge. Other survivors reported feelings of social anxiety and lowered personal confidence after returning from treatment.

Social experiences

Many survivors returned to school bald (13/22), though not all reported being concerned by this (7/13). Returning to school and resuming old friendships was a positive experience for some, with eight survivors reporting feeling supported by their friends. Mothers also stressed the positive impact of social support (10/21). However, more than a quarter of survivors reported social difficulties; friendship groups had often changed in their absence, or they no longer felt they “fit in” with their old group (5/19). Few survivors reported expressions of resentment by old friends (2/19). Somewhat more commonly, survivors reported perceiving their friends as somewhat immature upon their return (4/22).

Perceived impact on academic performance

On average, survivors were absent for nine months during their illness and treatment. Asked if they had been academically affected, survivor perceptions were divided, with around half believing they had been adversely affected (9/19), while others believed they were caught up in class and performing at their pre-cancer levels (8/19). During the interview process, it became apparent that parents were more concerned about their child's academic performance. Given this, an additional line of questioning asking parents to compare their child's performance directly pre- and post-cancer treatment was introduced to the interview schedule. Of the parents who responded to this line of questioning, eight (of the 12) mothers and five (of the seven) fathers reported their child's academic performance had declined significantly relative to their pre-cancer ability level.

Mathematics was commonly cited as the most difficult subject to catch up on, recall prior lessons from, or retain new knowledge about (13/22). Some families (9/22) reduced the importance they placed on schooling and academic performance due to the seriousness of the survivor's illness and because either the survivor themselves (4/19) or their parents (9/36) did not wish to push the survivor.

Perceived school support

The majority of teachers were perceived as supportive, both emotionally and practically. Teachers showed concern, understanding, and encouragement to the recovering student (two survivors, nine mothers, and four fathers). Practical support was also often forthcoming and appreciated by survivors (7/19). Practical help included extra attention in class to ensure concepts were understood, additional after-class tutoring, the provision of study notes for upcoming exams, and communication via email to keep survivors updated during absences. Special consideration was often given to survivors, including: extra time to complete assignments (three survivors and three mothers), extra time to complete exams (three survivors, two mothers, and one father), or extra marks (or an estimate based on previous work) for exams where much of the content had been missed (two survivors and two mothers). Very few negative comments about the survivor's teacher were reported (four parents).

Though core teachers were generally perceived as supportive, negative interactions with teachers who otherwise had little contact with the survivor were reported by some participants. Complaints ranged from the ordering of detention for wearing a hat on the playground (to cover baldness) to insisting the survivor run long distances in sport to exposing the survivor to chickenpox without notifying the parents (however, three families did comment that the risks associated with chickenpox had been communicated effectively within their school). Only three families reported having a supportive relationship with the school counselor.

Participants indicated that changing grades or schools often reduced the provision of support (10/22). For teachers in the new school or grade, the sometimes healthy appearance of the survivor seemed incompatible with the need to provide additional support and, as such, none was given. Many parents tried to advocate for their child within the school system (9/22); however, half of these parents reported that the school did not comprehend their child's unique situation and discounted their concerns. Unless communicated by a health professional, these parents perceived that the school would not take them seriously. The hospital outreach nurse was unanimously viewed as having a positive impact. The outreach nurse of Sydney Children's Hospital attends the school of each survivor in a role specifically designed to talk to students and teachers about cancer and answer their questions prior to the survivor's return to school.

Tutoring was commonly used to accelerate the “catch up” process. Fifteen families in total reported receiving tutoring, some of whom utilized more than one source of funding; 12 received funding from charitable organizations, three received additional school-based tutoring, and three sought private tutoring. Many felt the funding available for tutoring was insufficient and that private tutoring was largely unaffordable. In situations where limited funding was provided, families reported gratitude but felt the tutoring was discontinued prematurely and additional classes were needed. Three families reported that their schools arranged fundraising events in order to assist them to manage the cancer's financial impact. In all three cases, fundraisers were described as extremely positive events for the family, during which the survivor's experience was acknowledged and their return to school was celebrated.

Impact of school re-entry on sibling education

Around half of the siblings interviewed had finished school when their brother or sister completed treatment (six graduated, five attending high school). Of those still attending school, four commented that their schoolteachers did not treat them any differently when compared with other students, or were unaware that their sibling had cancer. Although mothers were generally concerned about their healthy child's education, both father and healthy-sibling groups were split equally on whether or not they felt the sibling's education had been impacted in some way.

Critical times of vulnerability

In addition to the initial period of returning to school, times of transition or change continued to be problematic several years post-treatment. Parents were surprised by the difficulties they faced when their child changed schools (e.g., primary to high school) or changed grades in a larger school. Communication faltered at these critical times in a number of ways. First, re-informing new school principals or teachers was often overlooked. Second, when parents did inform the school of their child's medical history, the new school staff had difficulty understanding the parents' concerns given the healthy appearance of the survivor. Third, parents reported that teachers had difficulty understanding their child had “gaps” in the fundamentals of their education which continued to impact their learning. Fourth, parents perceived that their behavior was viewed as overprotective or pushy and discounted unless supported by additional communication from their child's treating oncologist or hospital. Providing support to parents on how to communicate effectively with schools about their child's educational needs at times of transition is of key importance. The potential development of a form letter that parents may tailor specifically for their child's circumstances may help parents to communicate effectively with their school and have their concerns taken seriously.

The role of the outreach nurse

Families were unanimous in their appraisal of the outreach nurse and her positive impact at school. The benefits were numerous, including: increased awareness in both peers and teachers; the opportunity for classmates to ask questions in a supportive environment; the formation of realistic expectations; a decrease in illness-related stigma; the generation of discussion between teachers, parents, and survivors; and increased perceptions of support within the survivor's family. Our Australian data support the inclusion of an outreach nurse school visitation program as part of all school re-integration programs for young cancer survivors.

The role of the school counselor

Surprisingly, only three families reported interacting with the school counselor or psychologist. The underutilization of this service seems unfortunate given the difficulties survivors report when returning to school. In addition to emotional support, school counselors may provide practical support, acting as a liaison between the survivor and their teachers, and facilitating discussion of educational pathways and career or vocational plans for the survivor. However, given the rarity of adolescent cancer, it is likely many school counselors have not previously worked with a cancer survivor and may not feel sufficiently trained to manage their case. The future development of a training manual for school counselors may be a valuable resource.

The impact of returning to school on siblings

Siblings generally reported this period as non-eventful in comparison to the emotional stress and reduced parental support experienced while their sibling was receiving cancer treatment. In all cases, siblings reported a neutral to positive appraisal during this post-treatment period of their school friends, teachers, and academic performance. As such, resources and support for siblings may be more beneficial if implemented earlier in the cancer trajectory.

Study strengths and limitations

A key strength of this study was exploration of the survivor's return to school after cancer from the perspective of all family members. This approach allows a more holistic analysis of family experiences and facilitates the examination of both complementary and contradictory views of individuals who have experienced a similar situation. ³⁷ The qualitative framework provided rich, nuanced data about survivors' experiences and their education-related supportive care needs, providing novel information for parents, clinicians, and school personnel.

However, a number of study limitations must be acknowledged. First, the qualitative design precludes causal inferences about the patterns observed. Second, the number of siblings interviewed who were still of school age was small (n=5). This limited the depth of data collected on siblings and, as such, their experiences are underrepresented. Third, the low response rate of eligible families opting into the study raises issues regarding the representativeness of this sample. Families who agreed to participate were potentially functioning at a higher level and had made the transition back to school with relative ease. Conversely, it is possible that families who had more difficult school re-integration experiences were more motivated to participate in the study in order to express their concerns. The reasons for family non-participation remain unknown.