Original article
Facilitation of school re-entry and peer acceptance of children with cancer: a review and meta-analysis of intervention studies A.S. HELMS, MD, PHD STUDENT, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, and The University of Copenhagen, Faculty of Health Science, Copenhagen, K. SCHMIEGELOW, MD, PHD, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, and The University of Copenhagen, Faculty of Health Science, Copenhagen, J. BROK, MD, PHD, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, C. JOHANSEN, MD, PHD, DSC, Department of Oncology, Finsen Center, The University Hospital (Rigshospitalet), Copenhagen, and Unit of Survivorship, The Danish Cancer Society, Research Centre, Copenhagen, T. THORSTEINSSON, MSC IN SPORTS SCIENCE AND PSYCHOLOGY, PHD STUDENT, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, V. SIMOVSKA, MA IN PSYCHOLOGY, PHD IN EDUCATION, PROFESSOR, RESEARCH PROGRAMME DIRECTOR, Department of Education, Aarhus University, Campus Copenhagen, Copenhagen, & H.B. LARSEN, RN, MSC IN SOCIOLOGY, PHD, POST.DOC., Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, Denmark HELMS A.S., SCHMIEGELOW K., BROK J., JOHANSEN C., THORSTEINSSON T., SIMOVSKA V. & LARSEN H.B. (2016) European Journal of Cancer Care 25, 170–179 Facilitation of school re-entry and peer acceptance of children with cancer: a review and meta-analysis of intervention studies Increased survival rates from childhood cancer call for efforts to reintegrate children with cancer back into their academic and social environments. The aims of this study were to: (1) review and analyse the existing literature on school re-entry interventions for children with cancer; and (2) discuss the importance of peer involvement in the treatment. Relevant databases were searched using equivalent search algorithms and six studies were selected that target children with cancer and/or their classmates. Two authors independently reviewed the literature for data extraction. The articles were reviewed using the PRISMA model for reporting reviews. Statistical calculations for the meta-analyses were done using Review Manager 5.2. The metaanalyses showed significant effects of school re-entry programmes in terms of enhancing academic achievement in children with cancer (P = 0.008) and lowering their levels of depression (P = 0.05). Increased knowledge among classmates was associated with less fear and a more positive attitude towards the child with cancer. Due to limited numbers of patients, lack of control groups, and the diversity of intervention strategies used in previous studies, there is a need for intervention programmes exploring the optimal path for the reintegration of children with cancer into the education system and into their peer groups.
Keywords: childhood cancer, school re-entry, intervention, peers.
Correspondence address: Hanne Bækgaard Larsen, Department of Pediatrics and Adolescent Medicine, JMC-5704, The Juliane Marie Center, The University Hospital, (Rigshospitalet), Blegdamsvej 9, DK-2100 Copenhagen, Denmark (e-mail: [email protected]).
Accepted 18 July 2014 DOI: 10.1111/ecc.12230 European Journal of Cancer Care, 2016, 25, 170–179
© 2014 John Wiley & Sons Ltd
School re-entry for children with cancer
IN T R O D U C T I O N Children who undergo treatment for cancer are more likely to be academically burdened (Mitby et al. 2003; McLoone et al. 2013), have impaired peer relationships (Vannatta et al. 1998; Fraser 2003; Gurney et al. 2009) and are even bullied (MacArthur & Gaffney 2001; Lahteenmaki et al. 2002). School re-entry and social interactions with peers are among the key factors that influence children’s academic advancement and achievement of normal psychosocial maturation (Fottland 2000; Heffer & Lowe 2000). Significantly improved survival rates (Barnes 2005; Jemal et al. 2008; Ward et al. 2014) underscore the importance of treatment and rehabilitation that embraces all aspects of the child’s life, including school attendance and performance and socialising with peers. More specifically, intervention strategies applied during and following treatment are needed to effectively assist in promoting the re-integration of children with cancer into their school and social environments. The severe and life-threatening disease itself and the intensive treatment that cancer requires are stressful and exhausting for childhood cancer patients and their families (Bjork et al. 2009). Furthermore, the psychological and physical changes due to, for example, loss of muscle strength or hair, and body composition including altered weight, make these children vulnerable to peer rejection (Heffer & Lowe 2000; Oeffinger et al. 2006). Peer interaction is a major concern of many children with cancer, and fear of peer rejection is the foremost reason why they face difficulty in returning to school (Gregory et al. 1994; Butler & Haser 2006). Social exclusion can adversely affect the children’s academic and psychosocial development (Schultz et al. 2007; Butler et al. 2008). One in five children with cancer has been reported to repeat a class (Barrera et al. 2005), and nearly 50% experience school-related problems following treatment. In part, this is reflected in the 40% school absenteeism experienced by these children during their treatment (Charlton et al. 1991; af Sandeberg et al. 2008) and even 3 years after diagnosis, their school attendance remains irregular (Suzuki & Kato 2003; French et al. 2013). Despite increased awareness of these psychosocial problems, there is a lack of comprehensive scientific documentation of interventions that facilitate school re-entry and peer-supporting programmes. The aims of this study were to: (1) review and analyse the existing literature on school re-entry interventions for children with cancer; and (2) address the importance of peer involvement in the treatment of children with cancer. © 2014 John Wiley & Sons Ltd
ME THODS Search strategy The online medical and psychosocial databases PubMed, EMBASE, CINAHL, PsycINFO and Educational Resources Information Center (ERIC) were searched using equivalent search strings. All databases were explored without language limitations and from the databases’ inception to May 2013. We used ‘exploded’ MeSH terms and keywords to identify three main topics: (1) school; (2) intervention programme for children/adolescents; and (3) neoplasms. The search syntax was modified to match each of the databases. The general search string (as deployed in the PubMed) was: ((School Health Services[mh] OR Schools[mh] OR School*[ti]) AND (Absenteeism[mh] OR Absenteeism[tiab] OR Early Intervention[mh] OR Intervention Studies[mh] OR Intervention*[tiab] OR Programme Evaluation[mh] OR Program*[tiab] OR Reentry[tiab] OR Re-entry[tiab] OR ‘Return to school’[tiab]) AND (Cancer[ti] OR Neoplasms[mh] OR Tumor*[ti] OR Malignanc*[ti])). The exact search strings of the respective thesauruses of all databases are available on request from the corresponding author.
Inclusion criteria and study selection In order to be included, studies had to meet the following criteria: (1) be an intervention study targeting children with cancer and/or his/her classmates; and (2) include at least 10 participants. Thus, case reports, pilot studies and programme descriptions were excluded, as were intervention studies that only assessed and measured teachers, parents and/or siblings. The first author (ASH) performed the initial literature search and sorted the articles. The articles were then reviewed independently by ASH and HBL. Discrepancies were resolved by consensus discussion among the authors, and the process resulted in a total of six intervention studies targeting children with cancer and/or their peers.
Statistical methods The literature was reviewed using the PRISMA model for reporting reviews (Liberati et al. 2009). The meta-analyses were displayed graphically as forest plots that illustrate the relative strength of intervention effects in multiple quantitative scientific studies with comparable outcomes. We used mean difference and standardised mean difference to assess the continuous outcomes. The mean difference method was applied whenever the studies used the same scales for an outcome and standardised mean difference was applied whenever the studies used different 171
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scales to measure the same outcome. We used a random effect model to pool data according to the various outcomes. This analytical approach was chosen rather than the fixed effect model as the random effect model incorporates heterogeneity that cannot readily be explained by chance. The model represents our lack of knowledge about why intervention effects differ by considering the differences as if they were random. Review Manager 5.2 software (Anon 2012) was used to calculate the meta-analysis. We defined the level of heterogeneity (I2) between study results as low, moderate and substantial and these were expressed in ranges of between 0 and 25%, 25 and 75%, and 75 and 100% respectively. The area of each square depicted in the forest plots is proportional to the study’s weight in the meta-analysis. The horizontal lines emanating from the squares represent the confidence intervals of the mean differences. P < 0.05 was considered significant. All statistical calculations were done using the software programme Review Manager 5.2.
Ethical considerations This is a meta-analysis of existing data and does not require ethical approval.
RES U L T S Search results Using the search string, 638 studies were identified. After an initial screening, 515 articles were excluded based on their abstracts. The remaining 123 articles were read and 99 were excluded since they were not intervention studies. Of the remaining 24 studies, 12 were excluded because they were descriptive studies, two were excluded because they included less than 10 participants and four studies targeted only teachers or children with known attention deficit disorders. This left a total of six studies as shown in Figure 1. One of the studies, a doctoral thesis (DeLong 1999), was identified by searching the reference lists of relevant articles. The studies were categorised into two groups: school re-entry programmes directed towards the child with cancer (Katz et al. 1988, 1992; Varni et al. 1993; Rynard et al. 1998; Butler et al. 2008); and peer education programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999). The main characteristics and results of the studies are listed in Table 1 (school re-entry programmes for children with cancer) and Table 2 (peer education programmes). 172
Figure 1. Flow chart.
Characteristics of studies on school re-entry programmes targeting children with cancer Three school reintegration programmes targeting children with cancer were identified (Table 1) (Katz et al. 1988; Varni et al. 1993; Rynard et al. 1998; Butler et al. 2008). All three studies addressed North American children aged 5–19 years of age who were newly diagnosed with cancer and in each case a designated hospital liaison person implemented the study. Katz et al. (1988), however, excluded children with brain tumours. Two of the programmes, Varni et al. and Katz et al. are comparable since they target children with cancer primarily. Rynard et al. (1998) addresses school personnel only and secondarily children with cancer. Varni et al. (1993) randomised children into: (1) a standard school reintegration programme at the hospital (control group, n = 31); and (2) an experimental social skills training programme (n = 33). The experimental social skills training programme consisted of three © 2014 John Wiley & Sons Ltd
Time of measures T1 = Time of diagnosis T2 = 6 months post diagnosis T3 = 9 months post diagnosis
Times of measure are inconsistent
T1 = Within 30 days after the diagnosis T2 = At the end of the study (varied)
n I/C
n = 64
n = 67 Primary n = 37 Secondary n = 30
n = 85 I = 49 C = 36 (retrospective)
During treatment
Primary On treatment Secondary Off treatment
During treatment
Varni et al. 1993 USA RCT
Rynard et al. 1998 Canada Non-RCT
Katz et al. 1988 USA Non-RCT
© 2014 John Wiley & Sons Ltd
RCT, randomized control trial; I/C, intervention/control.
Study
Time of intervention
5–17 years, newly diagnosed with cancer (leukaemia, lymphomas or solid tumours) Control group: diagnosed within 36-month prior initiation of the programme
5–19 years; newly diagnosed with cancer
5–13 years; newly diagnosed with cancer
Target(s) of intervention
1. Preliminary activities in preparation for the patient’s return to school 2. Conferences with school personnel to clarify basic issues about the patient’s illness and treatment 3. Presentations to the patient’s classmates to help them understand his or her illness and needs 4. Follow-up after the patient has returned to school to strengthen communication between the family, the medical team and the school
Randomised to either • Experimental social skills training programme • Standard school reintegration programme The social skills training programme: Duration: 3 × 60 min individual sessions + two videos for use at home Boost stations at 3 and 6 weeks following their return to school The sessions comprised: 1. Social Cognitive Problem-Solving 2. Assertiveness Training 3. Handling Teasing and Name-Calling + Cue-controlled relaxation procedures The Pediatric Center School Support Program To provide school personnel with 1. Relevant, medical information about child-hood cancer and its treatment 2. Understanding of the emotional impact on the child, the family and the peers 3. Knowledge on how to support children with cancer and their families 4. Guidelines, resources and confidence to assist them in meeting the educational and emotional needs of how classmates can contribute to a supportive school environment 5. Knowledge on how to maintain communication for several years after treatment ends to help ensure long-term school adjustment
Intervention
Table 1. Summary of article selected for school re-entry programmes for children with cancer Measures
The Perceived Competence scale for children Children’s Depression Inventory Parents: CBCL Teachers: Teacher’s Rating of Child’s actual Competencies Deasy-Spinetta Behavioral Questionnaire
Parent: CBCL Teacher: CBCL The Kaufman Test of Educational Achievement (K-TEA) Absence Consumer Satisfaction Questionnaire Brief Program Questionnaire
Children self-report: Children depression inventory (CDI) Stait-Trait Anxiety Inventory for Children (STAIC) Self-Perception Profile for Children (SPPC) Social Support Scale for Children (SSSC) Parent report: Child Behaviour Checklist (CBCL)
Results
↑ Better school and social adjustment → Grades and absence ↑ Fewer behavioural problems. ↑ Less internalised behavioural problems (anxiety and depression) ↑ Social competence ↑ Self-perceived social and general competences (self-esteem) ↑ Competences
→ CBCL ↑ Lower reading achievements off treatment than on treatment (parents) ↑ Lower reading and spelling for children off treatment → Importance of school support programmes
↑ Less anxiety reported by both children and parents ↑ Less behavioural problems reported by parents ↑ Social competence
School re-entry for children with cancer
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174
Children with cancer =3 Classmates = 39
Children with cancer =2 Classmates = 172
During treatment
During treatment
Benner and Marlow 1991 USA Non-RCT Pre–post-test
DeLong 1999 USA Doctoral dissertation Non-RCT Pre–post-test
RCT, randomized control trial; I/C, intervention/control.
Children with cancer =3 Classmates = 192
n I/C
During treatment
Time of intervention
Treiber et al. 1986 USA Non-RCT Pre–post-test
Study
Classmates (6–10 years old) of three school age children recently diagnosed with cancer
T1 = Baseline T2 = 1 week after workshop
Classmates (14–17 years old) of two school-aged children recently diagnosed with cancer
Classmates (6–12 years old) of three school age children recently diagnosed with cancer
T1 = Baseline T2 = Within a week after workshop T3 = 1 month after workshop
T1: Workshop T2: Immediately after workshop T3: 1 month after workshop
Target(s) of intervention
Time of measures
Table 2. Summary of articles selected for peer education programmes Intervention
Workshop for classmates Duration of intervention: 30 min 1. Knowledge about cancer 2. Myths and misconceptions 3. Concerns Reviewed with the child with cancer and the parents before the workshop Workshop Duration: ? 1. Definition of cancer 2. Causes 3. Treatment and side-effects 4. Prognosis
Workshop for classmates Duration: 45–55 min 1. Knowledge about cancer 2. Psychosocial ramification 3. Attitudes and concerns
Measures
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986) Self-developed four items multiple choice questionnaire on leukaemia Self-developed questionnaire on helpful and hurtful behaviour
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986)
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986)
Results
↑ Knowledge about childhood cancer Attitudes towards child with cancer → Fear of contamination → Less worries → Willingness to interact Correlation between knowledge about cancer and attitude ↑ More knowledge associated with a more positive attitude ↑ More knowledge associated with less fear
↑ Knowledge about childhood cancer ↑ Willingness to interact → Change in concerns about the child with cancer
↑ Knowledge about childhood cancer ↑ Willingness to interact ↑ Decrease personal concerns ↑ Less worries
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School re-entry for children with cancer
individual 60-min sessions during which social cognitive problem solving and assertiveness training skills were learned. Additional boosting sessions at 3 and 6 weeks following school re-entry were included. Varni et al. (1993) aimed to include 100 participants to obtain sufficient strength but finished by including only 64 participants and ran a risk of statistical type II errors. Despite this, Varni et al. (1993) showed significant effect on levels of anxiety and depression, behavioural problems and an increase in social competences compared with the control group. Rynard et al. (1998) addressed school staff only. Aiming to enhance school personnel’s knowledge, resources, confidence and ongoing support the intervention programme attempted to secure the best possible educational, social and emotional school environment for the child with cancer. A total of 67 children with cancer were enrolled (intervention group, n = 37, control group, n = 30 consisting of previously treated children). The programme consisted of: (1) a face-to-face meeting between the school personnel and the hospital liaison person; (2) an information package containing a teacher’s manual on how to assist children with cancer in the academic setting; (3) an animated film about childhood cancer for classroom use and pamphlets about the specific disease, medical treatment, side-effects and special needs of the child with cancer; and (4) the teachers were invited to participate in annual workshops providing additional information on cancer and an opportunity to network with parents and health professionals. The effect of the intervention programme was a significant increase in reading and spelling achievement in the intervention group. No significant difference was seen in the Child Behaviour Checklist reported by the parents (Achenbach & Edelbroek 1983). Using children who had overcome their disease, as a control group is a methodological challenge because it deselects the most severely affected children who do not survive the intensive treatment or who have relapsed. Furthermore, using survivors as a control group introduces the risk of recall bias. Another problem of the Rynard et al. study is the inconsistent measuring times in the intervention group and the control group respectively. Reading and spelling achievement in children who had just undergone cancer treatment and returned to school after prolonged absences are, for example, compared with their classmates who had since developed academically. Furthermore, the prolonged school absence in itself can have a negative influence on especially reading and spelling achievement if the children had not been academically active during their absence. © 2014 John Wiley & Sons Ltd
The school re-entry programme by Katz et al. (1988) has the most comprehensive plan of activities. It includes both preparation activities for the child with cancer, conferences with school personnel and classroom presentations for the classmates. Furthermore, it offers a follow-up meeting at the school once the child returns. The intervention group on treatment was compared with a retrospective control group off treatment. As previously mentioned this leads to several methodological challenges and should be interpreted with caution. Katz et al. found that children in the intervention group reported significantly higher self-esteem scores. Parents of children in the intervention group reported significantly higher social competences and fewer overall behavioural problems in their child with cancer. Teachers rated ‘adjustment to school’ by children in the intervention group as being significantly better. In a later study, Katz et al. (1992) evaluated outcomes of the programme. Teachers gave high ratings for the knowledge gained by both the teachers and the classmates of the child with cancer, including social acceptance by the classmates. Patients, parents and teachers in the intervention group gave high ratings to the benefits of the programme.
Results regarding school re-entry programmes targeting the child with cancer Of the three studies, it was possible to perform metaanalyses on four different outcomes: depression, academic achievement, behavioural problems and social competences. The results of the meta-analyses show significant efficacy of school re-entry programmes in terms of enhancing the academic achievement of children with cancer (P = 0.008) as well as decreasing their levels of depression (P = 0.05) (Figs 2 and 3). No significant findings were identified regarding behavioural problems and social competences. As aforementioned, Katz et al. showed significant improvement in social competences. However, this was not supported by the meta-analysis that only showed a tendency to favour school re-entry interventions in relation to increasing social competences and less behavioural problems. We found low statistical heterogeneity in three of the four meta-analyses (I2 = 0%, 0% and 23% respectively), indicating that the measurement methods for the comparable outcomes used in these studies are similar and the findings are comparable. The fourth meta-analysis concerning social competences showed substantial statistical heterogeneity. 175
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Figure 2. Depression among children with cancer and the effect of school re-entry programmes (forest plot). IV, inverse variance; CI, confidence interval.
Figure 3. Academic achievement of children with cancer and the effect of school re-entry programmes (forest plot). IV, inverse variance; CI, confidence interval.
Characteristics of studies regarding peer education programmes Perceived peer support at school is a strong predictor of positive psychosocial development in children with cancer (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999). We identified three studies concerning peer education programmes (Table 2), the results of which are similar. They were all non-randomised programmes operating with pre-post measures targeting children from 6 to 17 years of age, and they were duplicates of the intervention study performed by Treiber et al. (1986). The central feature of these programmes was a 0.5- to 1-h educational workshop held in the classroom that aimed to increase the classmates’ general knowledge of childhood cancer, treatment, side-effects and the potential psychosocial squeals. It is noted that Treiber et al. found that 40% of classmates of children with cancer did not obtain parental permission to participate in the workshop. When only a portion of the class participates in the intervention, the classmates do not share the same knowledge and understanding and this may compromise the effect of the intervention programme. The studies were older (1986, 1991 and 1999) and all of them were carried out in North America and were conducted during treatment. All studies used the same assessment tool, that is, a self-developed questionnaire by Mabe et al. (1987). The questionnaire covered knowledge about childhood cancer, willingness to interact with sick classmates, as well as concerns and distress related to child176
hood cancer and in particular to the classmate with cancer. It consisted of 21 true/false items that assess general cancer knowledge and knowledge of cancer’s effect on social and emotional functioning. Higher knowledge of cancer was associated positively with previous experiences with cancer, lower fear of cancer, less worry about children with cancer and attitudinal predispositions to accept and interact with children who have cancer. Results regarding peer education programmes All three studies reported a significant increase in classmates’ knowledge of cancer and cancer treatment following the workshops. Treiber et al. (1986) (n = 192) and Benner and Marlow (1991) (n = 39) reported a significantly increased interest in interacting with the classmate with cancer. However, DeLong (1999) (n = 172) found no significant difference in willingness to interact with a sick classmate. Benner and Marlow reported reduced personal concerns for the child with cancer, and neither of the studies found that students were more worried about cancer or concerned about the child with cancer following the workshop. In addition, DeLong (1999) found a positive correlation between knowledge level and positive attitude towards peers with cancer; a result that was not found by Treiber et al. Finally, DeLong found a positive correlation between knowledge about cancer and low levels of anxiety among the classmates. The major outcome of the programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999) is a © 2014 John Wiley & Sons Ltd
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significantly increased level of knowledge about childhood cancer among classmates. Treiber et al. and Benner and Marlow show a significant increase in the classmates’ willingness to interact with the sick classmate while Treiber et al. show that classmates are significantly less worried about their sick classmate, and Benner and Marlow show a significant decrease in personal concerns for children with cancer. Furthermore, DeLong finds that an increased level of knowledge about childhood cancer is partly associated with a more positive attitude towards the child with cancer and partly associated with reduced fear about their sick classmate’s well-being and prospects of survival. The large numbers of participants in the studies concerning peer education programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999) reflected only the classmates of two and three children with cancer respectively. As such, the social position and integration of the child with cancer in the class may influence the peers’ evaluation of the educational programme and hereby make the results vulnerable to bias. It was not possible to perform meta-analyses due to the lack of control groups.
D ISC U SSI O N Results of the meta-analyses provide support for the efficacy of school re-entry programmes in terms of enhancing academic achievement and lowering levels of depression in children with cancer. No significant results were found in terms of reducing behavioural problems or enhancing social competences. When reviewing peer-supporting programmes, we found a significant increase in the classmates’ knowledge about cancer. Increased knowledge among classmates was associated with less fear and a more positive attitude towards the child with cancer. Additionally, the studies found a greater willingness by the classmates to interact with the child with cancer as well as a decrease in personal concerns. The programmes directly addressing the childhood cancer patient were larger controlled studies (n = 64–85) and favoured school re-entry programmes for children with cancer. Katz et al. (1988) showed significant improvement in social competences. However, this finding was not supported by Varni et al. (1993). This may be due in part to Katz et al.’s exclusion of children with brain tumours, who generally are more likely to score lower in social competences. Varni et al.’s limited inclusion of participants risked insufficient strength in the study and in part influenced the substantial heterogeneity between the tests (statistical heterogeneity: I2 = 86%). © 2014 John Wiley & Sons Ltd
School re-entry for children with cancer
With respect to academic achievement, a recent Danish nationwide, register-based study showed that children treated for cancer in general achieve the expected educational level post treatment (Koch et al. 2004). However, such final results do not reveal underlying fundamental school-related problems and/or additional resources needed to achieve them (Ott et al. 1982; Lahteenmaki et al. 2002; Harila-Saari et al. 2007). It is therefore essential that children with cancer be monitored closely during the course of treatment with respect to their academic performance and social life. School re-entry programmes integrated during the intensive treatment period may ensure the needed attention and support within these areas. The programmes concerning school re-entry programmes are few and more than 15 years old. The more recent programmes identified in the literature were case studies, pilot studies or descriptions of studies. It is unclear why more comprehensive scientific studies have not been performed since children with cancer continuously struggle with successful school re-entry. It is also unclear why existing programmes are not scientifically evaluated. One explanation may be that school re-entry programmes are well established and included in the standard treatment and therefore focus shifts to other areas of the child’s well-being. Another explanation is that the academic performance and psychosocial well-being of children with cancer when being reintegrated is an overlapping responsibility of both the school and the treatment facilities. However, transition between two systems is always a challenge since close and continuous contact with the child with cancer is disrupted, and the responsibility for the child’s well-being and academic performance can become divided. The level of knowledge about cancer among classmates correlates with a more positive attitude towards the classmate with cancer. However, Treiber et al. (1986) found that more than 40% of parents of healthy classmates refused to let their child participate in a workshop on childhood cancer, fearing that it would harm their child. The number of parents who did not permit their child to participate in the workshop raises the question to what degree parental permission should be obtained prior to the intervention. However, Treiber et al.’s findings are from 1986 and since then education on psychosocial matters have been incorporated into educational programmes. This advancement may lead to a greater acceptance of cancer workshops among parents of healthy classmates. None of the programmes invited the parents of classmates to participate. Inviting the parents could have provided the benefits of parents and children gaining an 177
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equivalent level of knowledge about cancer and the possibility to discuss this new knowledge within the family. The long-term effects of workshops targeting peers is unknown since the reviewed studies had no long-term follow-up, and it is unclear whether future peer education programmes would benefit from educational booster sessions to increase the probability of long-term beneficial changes in the attitude of classmates. None of the peer related studies had control groups. As society changes, so do school systems and attitudes towards children including children with cancer. School is now an integral part of the treatment and many hospitals have specific school re-entry programmes. Despite this, children with cancer are still at risk of significant academic lags due to prolonged hospitalisation and they still report struggling with friendships during and after treatment (Mitby et al. 2003; McLoone et al. 2013). In summary, this shows a continued need to focus on the importance of school reintegration of children with cancer and maintaining contact with their peer groups throughout the treatment period. The literature shows that peers are one of the key determinants in successful
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school reintegration of children with cancer (Georgiadi & Kourkoutas 2010). Intervention studies should explore different ways of learning during intensive treatment in order to ensure that the children maintain their normal academic development. Furthermore, intervention studies should explore how peer involvement can be integrated into the treatment of children with cancer so social maturation is ensured and social exclusion avoided. Ellis et al.’s pilot study (Ellis et al. 2013) using videoconferencing to connect children undergoing treatment with their class is an example of the types of innovative intervention programmes that include modern technology.
A C KNOWL E DGE ME NTS The study is supported by grants from The Danish Cancer Society, The Novo Nordisk Foundation and the Danish Childhood Cancer Foundation.
C ONFL I C T OF I NTE RE ST All authors have no conflict of interest.
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statistics, 2008. CA: A Cancer Journal for Clinicians 58, 71–96. Katz E.R., Rubinstein C.L., Hubert N.C. & Blew A. (1988) School and social reintegration of children with cancer. Journal of Psychosocial Oncology 6, 123–140. Katz E.R., Varni J.W., Rubenstein C.L., Blew A. & Hubert N. (1992) Teacher, parent, and child evaluative ratings of a school reintegration intervention for children with newly diagnosed cancer. Children’s Health Care: Journal of the Association for the Care of Children’s Health 21, 69–75. Koch S.V., Kejs A.M., Engholm G., Johansen C. & Schmiegelow K. (2004) Educational attainment among survivors of childhood cancer: a population-based cohort study in Denmark. British Journal of Cancer 91, 923–928. Lahteenmaki P.M., Huostila J., Hinkka S. & Salmi T.T. (2002) Childhood cancer patients at school. European Journal of Cancer 38, 1227–1240. Liberati A., Altman D.G., Tetzlaff J., Mulrow C., Gotzsche P.C., Ioannidis J.P., Clarke M., Devereaux P.J., Kleijnen J. & Moher D. (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. BMJ (Clinical Research Ed.) 339, b2700. Mabe P.A., Riley W.T. & Treiber F.A. (1987) Cancer knowledge and acceptance of children with cancer. The Journal of School Health 57, 59–63. MacArthur J. & Gaffney M. (2001) Bullied or Teased or Just Another Kid? The Social Experiences of Students with
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Disabilities. Council for Educational Research, Wellington, New Zealand. McLoone J.K., Wakefield C.E. & Cohn R.J. (2013) Childhood cancer survivors’ school (re)entry: Australian parents’ perceptions. European Journal of Cancer Care 22, 484–492. Mitby P.A., Robison L.L., Whitton J.A., Zevon M.A., Gibbs I.C., Tersak J.M., Meadows A.T., Stovall M., Zeltzer L.K. & Mertens A.C. (2003) Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 97, 1115–1126. Oeffinger K.C., Mertens A.C., Sklar C.A., Kawashima T., Hudson M.M., Meadows A.T., Friedman D.L., Marina N., Hobbie W., Kadan-Lottick N.S., Schwartz C.L., Leisenring W. & Robison L.L. (2006) Chronic health conditions in adult survivors of childhood cancer. The New England Journal of Medicine 355, 1572– 1582. Ott J.S., Webb T.E., Anderson C.A., Kastelic J.E. & Krill C.E., Jr (1982) Childhood cancer and vulnerability for significant academic underachievement. Journal of Learning Disabilities 15, 363–364. Rynard D.W., Chambers A., Klinck A.M. & Gray J.D. (1998) School support programs for chronically Ill children: evaluating the adjustment of children with cancer at school. Children’s Health Care: Journal of the Association for the Care of Children’s Health 27, 31–46. af Sandeberg M., Johansson E., Bjork O. & Wettergren L. (2008) Health-related quality of life relates to school attendance
in children on treatment for cancer. Journal of Pediatric Oncology Nursing 25, 265–274. Schultz K.A., Ness K.K., Whitton J., Recklitis C., Zebrack B., Robison L.L., Zeltzer L. & Mertens A.C. (2007) Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology 25, 3649–3656. Suzuki L.K. & Kato P.M. (2003) Psychosocial support for patients in pediatric oncology: the influences of parents, schools, peers, and technology. Journal of Pediatric Oncology Nursing 20, 159–174. Treiber F.A., Schramm L. & Mabe P.A. (1986) Children’s knowledge and concerns towards a peer with cancer: a workshop intervention approach. Child Psychiatry and Human Development 16, 249–260. Vannatta K., Zeller M., Noll R.B. & Koontz K. (1998) Social functioning of children surviving bone marrow transplantation. Journal of Pediatric Psychology 23, 169– 178. Varni J.W., Katz E.R., Colegrove R., Jr & Dolgin M. (1993) The impact of social skills training on the adjustment of children with newly diagnosed cancer. Journal of Pediatric Psychology 18, 751– 767. Ward E., DeSantis C., Robbins A., Kohler B. & Jemal A. (2014) Childhood and adolescent cancer statistics, 2014. CA: A Cancer Journal for Clinicians 64, 83–103.
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Facilitation of school re-entry and peer acceptance of children with cancer: a review and meta-analysis of intervention studies A.S. HELMS, MD, PHD STUDENT, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, and The University of Copenhagen, Faculty of Health Science, Copenhagen, K. SCHMIEGELOW, MD, PHD, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, and The University of Copenhagen, Faculty of Health Science, Copenhagen, J. BROK, MD, PHD, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, C. JOHANSEN, MD, PHD, DSC, Department of Oncology, Finsen Center, The University Hospital (Rigshospitalet), Copenhagen, and Unit of Survivorship, The Danish Cancer Society, Research Centre, Copenhagen, T. THORSTEINSSON, MSC IN SPORTS SCIENCE AND PSYCHOLOGY, PHD STUDENT, Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, V. SIMOVSKA, MA IN PSYCHOLOGY, PHD IN EDUCATION, PROFESSOR, RESEARCH PROGRAMME DIRECTOR, Department of Education, Aarhus University, Campus Copenhagen, Copenhagen, & H.B. LARSEN, RN, MSC IN SOCIOLOGY, PHD, POST.DOC., Department of Paediatrics and Adolescent Medicine, The University Hospital (Rigshospitalet), Copenhagen, Denmark HELMS A.S., SCHMIEGELOW K., BROK J., JOHANSEN C., THORSTEINSSON T., SIMOVSKA V. & LARSEN H.B. (2016) European Journal of Cancer Care 25, 170–179 Facilitation of school re-entry and peer acceptance of children with cancer: a review and meta-analysis of intervention studies Increased survival rates from childhood cancer call for efforts to reintegrate children with cancer back into their academic and social environments. The aims of this study were to: (1) review and analyse the existing literature on school re-entry interventions for children with cancer; and (2) discuss the importance of peer involvement in the treatment. Relevant databases were searched using equivalent search algorithms and six studies were selected that target children with cancer and/or their classmates. Two authors independently reviewed the literature for data extraction. The articles were reviewed using the PRISMA model for reporting reviews. Statistical calculations for the meta-analyses were done using Review Manager 5.2. The metaanalyses showed significant effects of school re-entry programmes in terms of enhancing academic achievement in children with cancer (P = 0.008) and lowering their levels of depression (P = 0.05). Increased knowledge among classmates was associated with less fear and a more positive attitude towards the child with cancer. Due to limited numbers of patients, lack of control groups, and the diversity of intervention strategies used in previous studies, there is a need for intervention programmes exploring the optimal path for the reintegration of children with cancer into the education system and into their peer groups.
Keywords: childhood cancer, school re-entry, intervention, peers.
Correspondence address: Hanne Bækgaard Larsen, Department of Pediatrics and Adolescent Medicine, JMC-5704, The Juliane Marie Center, The University Hospital, (Rigshospitalet), Blegdamsvej 9, DK-2100 Copenhagen, Denmark (e-mail: [email protected]).
Accepted 18 July 2014 DOI: 10.1111/ecc.12230 European Journal of Cancer Care, 2016, 25, 170–179
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IN T R O D U C T I O N Children who undergo treatment for cancer are more likely to be academically burdened (Mitby et al. 2003; McLoone et al. 2013), have impaired peer relationships (Vannatta et al. 1998; Fraser 2003; Gurney et al. 2009) and are even bullied (MacArthur & Gaffney 2001; Lahteenmaki et al. 2002). School re-entry and social interactions with peers are among the key factors that influence children’s academic advancement and achievement of normal psychosocial maturation (Fottland 2000; Heffer & Lowe 2000). Significantly improved survival rates (Barnes 2005; Jemal et al. 2008; Ward et al. 2014) underscore the importance of treatment and rehabilitation that embraces all aspects of the child’s life, including school attendance and performance and socialising with peers. More specifically, intervention strategies applied during and following treatment are needed to effectively assist in promoting the re-integration of children with cancer into their school and social environments. The severe and life-threatening disease itself and the intensive treatment that cancer requires are stressful and exhausting for childhood cancer patients and their families (Bjork et al. 2009). Furthermore, the psychological and physical changes due to, for example, loss of muscle strength or hair, and body composition including altered weight, make these children vulnerable to peer rejection (Heffer & Lowe 2000; Oeffinger et al. 2006). Peer interaction is a major concern of many children with cancer, and fear of peer rejection is the foremost reason why they face difficulty in returning to school (Gregory et al. 1994; Butler & Haser 2006). Social exclusion can adversely affect the children’s academic and psychosocial development (Schultz et al. 2007; Butler et al. 2008). One in five children with cancer has been reported to repeat a class (Barrera et al. 2005), and nearly 50% experience school-related problems following treatment. In part, this is reflected in the 40% school absenteeism experienced by these children during their treatment (Charlton et al. 1991; af Sandeberg et al. 2008) and even 3 years after diagnosis, their school attendance remains irregular (Suzuki & Kato 2003; French et al. 2013). Despite increased awareness of these psychosocial problems, there is a lack of comprehensive scientific documentation of interventions that facilitate school re-entry and peer-supporting programmes. The aims of this study were to: (1) review and analyse the existing literature on school re-entry interventions for children with cancer; and (2) address the importance of peer involvement in the treatment of children with cancer. © 2014 John Wiley & Sons Ltd
ME THODS Search strategy The online medical and psychosocial databases PubMed, EMBASE, CINAHL, PsycINFO and Educational Resources Information Center (ERIC) were searched using equivalent search strings. All databases were explored without language limitations and from the databases’ inception to May 2013. We used ‘exploded’ MeSH terms and keywords to identify three main topics: (1) school; (2) intervention programme for children/adolescents; and (3) neoplasms. The search syntax was modified to match each of the databases. The general search string (as deployed in the PubMed) was: ((School Health Services[mh] OR Schools[mh] OR School*[ti]) AND (Absenteeism[mh] OR Absenteeism[tiab] OR Early Intervention[mh] OR Intervention Studies[mh] OR Intervention*[tiab] OR Programme Evaluation[mh] OR Program*[tiab] OR Reentry[tiab] OR Re-entry[tiab] OR ‘Return to school’[tiab]) AND (Cancer[ti] OR Neoplasms[mh] OR Tumor*[ti] OR Malignanc*[ti])). The exact search strings of the respective thesauruses of all databases are available on request from the corresponding author.
Inclusion criteria and study selection In order to be included, studies had to meet the following criteria: (1) be an intervention study targeting children with cancer and/or his/her classmates; and (2) include at least 10 participants. Thus, case reports, pilot studies and programme descriptions were excluded, as were intervention studies that only assessed and measured teachers, parents and/or siblings. The first author (ASH) performed the initial literature search and sorted the articles. The articles were then reviewed independently by ASH and HBL. Discrepancies were resolved by consensus discussion among the authors, and the process resulted in a total of six intervention studies targeting children with cancer and/or their peers.
Statistical methods The literature was reviewed using the PRISMA model for reporting reviews (Liberati et al. 2009). The meta-analyses were displayed graphically as forest plots that illustrate the relative strength of intervention effects in multiple quantitative scientific studies with comparable outcomes. We used mean difference and standardised mean difference to assess the continuous outcomes. The mean difference method was applied whenever the studies used the same scales for an outcome and standardised mean difference was applied whenever the studies used different 171
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scales to measure the same outcome. We used a random effect model to pool data according to the various outcomes. This analytical approach was chosen rather than the fixed effect model as the random effect model incorporates heterogeneity that cannot readily be explained by chance. The model represents our lack of knowledge about why intervention effects differ by considering the differences as if they were random. Review Manager 5.2 software (Anon 2012) was used to calculate the meta-analysis. We defined the level of heterogeneity (I2) between study results as low, moderate and substantial and these were expressed in ranges of between 0 and 25%, 25 and 75%, and 75 and 100% respectively. The area of each square depicted in the forest plots is proportional to the study’s weight in the meta-analysis. The horizontal lines emanating from the squares represent the confidence intervals of the mean differences. P < 0.05 was considered significant. All statistical calculations were done using the software programme Review Manager 5.2.
Ethical considerations This is a meta-analysis of existing data and does not require ethical approval.
RES U L T S Search results Using the search string, 638 studies were identified. After an initial screening, 515 articles were excluded based on their abstracts. The remaining 123 articles were read and 99 were excluded since they were not intervention studies. Of the remaining 24 studies, 12 were excluded because they were descriptive studies, two were excluded because they included less than 10 participants and four studies targeted only teachers or children with known attention deficit disorders. This left a total of six studies as shown in Figure 1. One of the studies, a doctoral thesis (DeLong 1999), was identified by searching the reference lists of relevant articles. The studies were categorised into two groups: school re-entry programmes directed towards the child with cancer (Katz et al. 1988, 1992; Varni et al. 1993; Rynard et al. 1998; Butler et al. 2008); and peer education programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999). The main characteristics and results of the studies are listed in Table 1 (school re-entry programmes for children with cancer) and Table 2 (peer education programmes). 172
Figure 1. Flow chart.
Characteristics of studies on school re-entry programmes targeting children with cancer Three school reintegration programmes targeting children with cancer were identified (Table 1) (Katz et al. 1988; Varni et al. 1993; Rynard et al. 1998; Butler et al. 2008). All three studies addressed North American children aged 5–19 years of age who were newly diagnosed with cancer and in each case a designated hospital liaison person implemented the study. Katz et al. (1988), however, excluded children with brain tumours. Two of the programmes, Varni et al. and Katz et al. are comparable since they target children with cancer primarily. Rynard et al. (1998) addresses school personnel only and secondarily children with cancer. Varni et al. (1993) randomised children into: (1) a standard school reintegration programme at the hospital (control group, n = 31); and (2) an experimental social skills training programme (n = 33). The experimental social skills training programme consisted of three © 2014 John Wiley & Sons Ltd
Time of measures T1 = Time of diagnosis T2 = 6 months post diagnosis T3 = 9 months post diagnosis
Times of measure are inconsistent
T1 = Within 30 days after the diagnosis T2 = At the end of the study (varied)
n I/C
n = 64
n = 67 Primary n = 37 Secondary n = 30
n = 85 I = 49 C = 36 (retrospective)
During treatment
Primary On treatment Secondary Off treatment
During treatment
Varni et al. 1993 USA RCT
Rynard et al. 1998 Canada Non-RCT
Katz et al. 1988 USA Non-RCT
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RCT, randomized control trial; I/C, intervention/control.
Study
Time of intervention
5–17 years, newly diagnosed with cancer (leukaemia, lymphomas or solid tumours) Control group: diagnosed within 36-month prior initiation of the programme
5–19 years; newly diagnosed with cancer
5–13 years; newly diagnosed with cancer
Target(s) of intervention
1. Preliminary activities in preparation for the patient’s return to school 2. Conferences with school personnel to clarify basic issues about the patient’s illness and treatment 3. Presentations to the patient’s classmates to help them understand his or her illness and needs 4. Follow-up after the patient has returned to school to strengthen communication between the family, the medical team and the school
Randomised to either • Experimental social skills training programme • Standard school reintegration programme The social skills training programme: Duration: 3 × 60 min individual sessions + two videos for use at home Boost stations at 3 and 6 weeks following their return to school The sessions comprised: 1. Social Cognitive Problem-Solving 2. Assertiveness Training 3. Handling Teasing and Name-Calling + Cue-controlled relaxation procedures The Pediatric Center School Support Program To provide school personnel with 1. Relevant, medical information about child-hood cancer and its treatment 2. Understanding of the emotional impact on the child, the family and the peers 3. Knowledge on how to support children with cancer and their families 4. Guidelines, resources and confidence to assist them in meeting the educational and emotional needs of how classmates can contribute to a supportive school environment 5. Knowledge on how to maintain communication for several years after treatment ends to help ensure long-term school adjustment
Intervention
Table 1. Summary of article selected for school re-entry programmes for children with cancer Measures
The Perceived Competence scale for children Children’s Depression Inventory Parents: CBCL Teachers: Teacher’s Rating of Child’s actual Competencies Deasy-Spinetta Behavioral Questionnaire
Parent: CBCL Teacher: CBCL The Kaufman Test of Educational Achievement (K-TEA) Absence Consumer Satisfaction Questionnaire Brief Program Questionnaire
Children self-report: Children depression inventory (CDI) Stait-Trait Anxiety Inventory for Children (STAIC) Self-Perception Profile for Children (SPPC) Social Support Scale for Children (SSSC) Parent report: Child Behaviour Checklist (CBCL)
Results
↑ Better school and social adjustment → Grades and absence ↑ Fewer behavioural problems. ↑ Less internalised behavioural problems (anxiety and depression) ↑ Social competence ↑ Self-perceived social and general competences (self-esteem) ↑ Competences
→ CBCL ↑ Lower reading achievements off treatment than on treatment (parents) ↑ Lower reading and spelling for children off treatment → Importance of school support programmes
↑ Less anxiety reported by both children and parents ↑ Less behavioural problems reported by parents ↑ Social competence
School re-entry for children with cancer
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174
Children with cancer =3 Classmates = 39
Children with cancer =2 Classmates = 172
During treatment
During treatment
Benner and Marlow 1991 USA Non-RCT Pre–post-test
DeLong 1999 USA Doctoral dissertation Non-RCT Pre–post-test
RCT, randomized control trial; I/C, intervention/control.
Children with cancer =3 Classmates = 192
n I/C
During treatment
Time of intervention
Treiber et al. 1986 USA Non-RCT Pre–post-test
Study
Classmates (6–10 years old) of three school age children recently diagnosed with cancer
T1 = Baseline T2 = 1 week after workshop
Classmates (14–17 years old) of two school-aged children recently diagnosed with cancer
Classmates (6–12 years old) of three school age children recently diagnosed with cancer
T1 = Baseline T2 = Within a week after workshop T3 = 1 month after workshop
T1: Workshop T2: Immediately after workshop T3: 1 month after workshop
Target(s) of intervention
Time of measures
Table 2. Summary of articles selected for peer education programmes Intervention
Workshop for classmates Duration of intervention: 30 min 1. Knowledge about cancer 2. Myths and misconceptions 3. Concerns Reviewed with the child with cancer and the parents before the workshop Workshop Duration: ? 1. Definition of cancer 2. Causes 3. Treatment and side-effects 4. Prognosis
Workshop for classmates Duration: 45–55 min 1. Knowledge about cancer 2. Psychosocial ramification 3. Attitudes and concerns
Measures
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986) Self-developed four items multiple choice questionnaire on leukaemia Self-developed questionnaire on helpful and hurtful behaviour
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986)
Cancer Knowledge Questionnaire (Developed by Treiber et al. 1986)
Results
↑ Knowledge about childhood cancer Attitudes towards child with cancer → Fear of contamination → Less worries → Willingness to interact Correlation between knowledge about cancer and attitude ↑ More knowledge associated with a more positive attitude ↑ More knowledge associated with less fear
↑ Knowledge about childhood cancer ↑ Willingness to interact → Change in concerns about the child with cancer
↑ Knowledge about childhood cancer ↑ Willingness to interact ↑ Decrease personal concerns ↑ Less worries
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individual 60-min sessions during which social cognitive problem solving and assertiveness training skills were learned. Additional boosting sessions at 3 and 6 weeks following school re-entry were included. Varni et al. (1993) aimed to include 100 participants to obtain sufficient strength but finished by including only 64 participants and ran a risk of statistical type II errors. Despite this, Varni et al. (1993) showed significant effect on levels of anxiety and depression, behavioural problems and an increase in social competences compared with the control group. Rynard et al. (1998) addressed school staff only. Aiming to enhance school personnel’s knowledge, resources, confidence and ongoing support the intervention programme attempted to secure the best possible educational, social and emotional school environment for the child with cancer. A total of 67 children with cancer were enrolled (intervention group, n = 37, control group, n = 30 consisting of previously treated children). The programme consisted of: (1) a face-to-face meeting between the school personnel and the hospital liaison person; (2) an information package containing a teacher’s manual on how to assist children with cancer in the academic setting; (3) an animated film about childhood cancer for classroom use and pamphlets about the specific disease, medical treatment, side-effects and special needs of the child with cancer; and (4) the teachers were invited to participate in annual workshops providing additional information on cancer and an opportunity to network with parents and health professionals. The effect of the intervention programme was a significant increase in reading and spelling achievement in the intervention group. No significant difference was seen in the Child Behaviour Checklist reported by the parents (Achenbach & Edelbroek 1983). Using children who had overcome their disease, as a control group is a methodological challenge because it deselects the most severely affected children who do not survive the intensive treatment or who have relapsed. Furthermore, using survivors as a control group introduces the risk of recall bias. Another problem of the Rynard et al. study is the inconsistent measuring times in the intervention group and the control group respectively. Reading and spelling achievement in children who had just undergone cancer treatment and returned to school after prolonged absences are, for example, compared with their classmates who had since developed academically. Furthermore, the prolonged school absence in itself can have a negative influence on especially reading and spelling achievement if the children had not been academically active during their absence. © 2014 John Wiley & Sons Ltd
The school re-entry programme by Katz et al. (1988) has the most comprehensive plan of activities. It includes both preparation activities for the child with cancer, conferences with school personnel and classroom presentations for the classmates. Furthermore, it offers a follow-up meeting at the school once the child returns. The intervention group on treatment was compared with a retrospective control group off treatment. As previously mentioned this leads to several methodological challenges and should be interpreted with caution. Katz et al. found that children in the intervention group reported significantly higher self-esteem scores. Parents of children in the intervention group reported significantly higher social competences and fewer overall behavioural problems in their child with cancer. Teachers rated ‘adjustment to school’ by children in the intervention group as being significantly better. In a later study, Katz et al. (1992) evaluated outcomes of the programme. Teachers gave high ratings for the knowledge gained by both the teachers and the classmates of the child with cancer, including social acceptance by the classmates. Patients, parents and teachers in the intervention group gave high ratings to the benefits of the programme.
Results regarding school re-entry programmes targeting the child with cancer Of the three studies, it was possible to perform metaanalyses on four different outcomes: depression, academic achievement, behavioural problems and social competences. The results of the meta-analyses show significant efficacy of school re-entry programmes in terms of enhancing the academic achievement of children with cancer (P = 0.008) as well as decreasing their levels of depression (P = 0.05) (Figs 2 and 3). No significant findings were identified regarding behavioural problems and social competences. As aforementioned, Katz et al. showed significant improvement in social competences. However, this was not supported by the meta-analysis that only showed a tendency to favour school re-entry interventions in relation to increasing social competences and less behavioural problems. We found low statistical heterogeneity in three of the four meta-analyses (I2 = 0%, 0% and 23% respectively), indicating that the measurement methods for the comparable outcomes used in these studies are similar and the findings are comparable. The fourth meta-analysis concerning social competences showed substantial statistical heterogeneity. 175
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Figure 2. Depression among children with cancer and the effect of school re-entry programmes (forest plot). IV, inverse variance; CI, confidence interval.
Figure 3. Academic achievement of children with cancer and the effect of school re-entry programmes (forest plot). IV, inverse variance; CI, confidence interval.
Characteristics of studies regarding peer education programmes Perceived peer support at school is a strong predictor of positive psychosocial development in children with cancer (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999). We identified three studies concerning peer education programmes (Table 2), the results of which are similar. They were all non-randomised programmes operating with pre-post measures targeting children from 6 to 17 years of age, and they were duplicates of the intervention study performed by Treiber et al. (1986). The central feature of these programmes was a 0.5- to 1-h educational workshop held in the classroom that aimed to increase the classmates’ general knowledge of childhood cancer, treatment, side-effects and the potential psychosocial squeals. It is noted that Treiber et al. found that 40% of classmates of children with cancer did not obtain parental permission to participate in the workshop. When only a portion of the class participates in the intervention, the classmates do not share the same knowledge and understanding and this may compromise the effect of the intervention programme. The studies were older (1986, 1991 and 1999) and all of them were carried out in North America and were conducted during treatment. All studies used the same assessment tool, that is, a self-developed questionnaire by Mabe et al. (1987). The questionnaire covered knowledge about childhood cancer, willingness to interact with sick classmates, as well as concerns and distress related to child176
hood cancer and in particular to the classmate with cancer. It consisted of 21 true/false items that assess general cancer knowledge and knowledge of cancer’s effect on social and emotional functioning. Higher knowledge of cancer was associated positively with previous experiences with cancer, lower fear of cancer, less worry about children with cancer and attitudinal predispositions to accept and interact with children who have cancer. Results regarding peer education programmes All three studies reported a significant increase in classmates’ knowledge of cancer and cancer treatment following the workshops. Treiber et al. (1986) (n = 192) and Benner and Marlow (1991) (n = 39) reported a significantly increased interest in interacting with the classmate with cancer. However, DeLong (1999) (n = 172) found no significant difference in willingness to interact with a sick classmate. Benner and Marlow reported reduced personal concerns for the child with cancer, and neither of the studies found that students were more worried about cancer or concerned about the child with cancer following the workshop. In addition, DeLong (1999) found a positive correlation between knowledge level and positive attitude towards peers with cancer; a result that was not found by Treiber et al. Finally, DeLong found a positive correlation between knowledge about cancer and low levels of anxiety among the classmates. The major outcome of the programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999) is a © 2014 John Wiley & Sons Ltd
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significantly increased level of knowledge about childhood cancer among classmates. Treiber et al. and Benner and Marlow show a significant increase in the classmates’ willingness to interact with the sick classmate while Treiber et al. show that classmates are significantly less worried about their sick classmate, and Benner and Marlow show a significant decrease in personal concerns for children with cancer. Furthermore, DeLong finds that an increased level of knowledge about childhood cancer is partly associated with a more positive attitude towards the child with cancer and partly associated with reduced fear about their sick classmate’s well-being and prospects of survival. The large numbers of participants in the studies concerning peer education programmes (Treiber et al. 1986; Benner & Marlow 1991; DeLong 1999) reflected only the classmates of two and three children with cancer respectively. As such, the social position and integration of the child with cancer in the class may influence the peers’ evaluation of the educational programme and hereby make the results vulnerable to bias. It was not possible to perform meta-analyses due to the lack of control groups.
D ISC U SSI O N Results of the meta-analyses provide support for the efficacy of school re-entry programmes in terms of enhancing academic achievement and lowering levels of depression in children with cancer. No significant results were found in terms of reducing behavioural problems or enhancing social competences. When reviewing peer-supporting programmes, we found a significant increase in the classmates’ knowledge about cancer. Increased knowledge among classmates was associated with less fear and a more positive attitude towards the child with cancer. Additionally, the studies found a greater willingness by the classmates to interact with the child with cancer as well as a decrease in personal concerns. The programmes directly addressing the childhood cancer patient were larger controlled studies (n = 64–85) and favoured school re-entry programmes for children with cancer. Katz et al. (1988) showed significant improvement in social competences. However, this finding was not supported by Varni et al. (1993). This may be due in part to Katz et al.’s exclusion of children with brain tumours, who generally are more likely to score lower in social competences. Varni et al.’s limited inclusion of participants risked insufficient strength in the study and in part influenced the substantial heterogeneity between the tests (statistical heterogeneity: I2 = 86%). © 2014 John Wiley & Sons Ltd
School re-entry for children with cancer
With respect to academic achievement, a recent Danish nationwide, register-based study showed that children treated for cancer in general achieve the expected educational level post treatment (Koch et al. 2004). However, such final results do not reveal underlying fundamental school-related problems and/or additional resources needed to achieve them (Ott et al. 1982; Lahteenmaki et al. 2002; Harila-Saari et al. 2007). It is therefore essential that children with cancer be monitored closely during the course of treatment with respect to their academic performance and social life. School re-entry programmes integrated during the intensive treatment period may ensure the needed attention and support within these areas. The programmes concerning school re-entry programmes are few and more than 15 years old. The more recent programmes identified in the literature were case studies, pilot studies or descriptions of studies. It is unclear why more comprehensive scientific studies have not been performed since children with cancer continuously struggle with successful school re-entry. It is also unclear why existing programmes are not scientifically evaluated. One explanation may be that school re-entry programmes are well established and included in the standard treatment and therefore focus shifts to other areas of the child’s well-being. Another explanation is that the academic performance and psychosocial well-being of children with cancer when being reintegrated is an overlapping responsibility of both the school and the treatment facilities. However, transition between two systems is always a challenge since close and continuous contact with the child with cancer is disrupted, and the responsibility for the child’s well-being and academic performance can become divided. The level of knowledge about cancer among classmates correlates with a more positive attitude towards the classmate with cancer. However, Treiber et al. (1986) found that more than 40% of parents of healthy classmates refused to let their child participate in a workshop on childhood cancer, fearing that it would harm their child. The number of parents who did not permit their child to participate in the workshop raises the question to what degree parental permission should be obtained prior to the intervention. However, Treiber et al.’s findings are from 1986 and since then education on psychosocial matters have been incorporated into educational programmes. This advancement may lead to a greater acceptance of cancer workshops among parents of healthy classmates. None of the programmes invited the parents of classmates to participate. Inviting the parents could have provided the benefits of parents and children gaining an 177
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equivalent level of knowledge about cancer and the possibility to discuss this new knowledge within the family. The long-term effects of workshops targeting peers is unknown since the reviewed studies had no long-term follow-up, and it is unclear whether future peer education programmes would benefit from educational booster sessions to increase the probability of long-term beneficial changes in the attitude of classmates. None of the peer related studies had control groups. As society changes, so do school systems and attitudes towards children including children with cancer. School is now an integral part of the treatment and many hospitals have specific school re-entry programmes. Despite this, children with cancer are still at risk of significant academic lags due to prolonged hospitalisation and they still report struggling with friendships during and after treatment (Mitby et al. 2003; McLoone et al. 2013). In summary, this shows a continued need to focus on the importance of school reintegration of children with cancer and maintaining contact with their peer groups throughout the treatment period. The literature shows that peers are one of the key determinants in successful
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A C KNOWL E DGE ME NTS The study is supported by grants from The Danish Cancer Society, The Novo Nordisk Foundation and the Danish Childhood Cancer Foundation.
C ONFL I C T OF I NTE RE ST All authors have no conflict of interest.
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