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CCH 12475
CCH 12475
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Review Article
care, health and development
doi:10.1111/cch.12475
Abstract
Background Serious chronic illness can have a detrimental effect on school attendance, participation
and engagement, leaving affected students at risk of failing to meet their developmental potential. An
improved understanding of factors that help to explain or mitigate this risk can help educators and
health professionals deliver the most effective support. This meta-review critiqued the available
evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases,
heart diseases, cystic fibrosis and gastrointestinal diseases) and children’s and adolescents’ school
experiences and outcomes, as well as investigating the medical, school, psychosocial and
sociodemographic factors that are linked to poorer or better school outcomes.
Methods We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and
Keywords
child development, Dissertations, and PsycINFO (2000–2015). Systematic and narrative reviews, and meta-analyses, of
chronic illness, school, original studies examining students’ subjective school experiences and objective school outcomes
systematic review
were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses
criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment,
Correspondence:
Alistair Lum, Behavioural Development, and Evaluation system guided our recommendations for practice and research.
Sciences Unit proudly Results Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore,
supported by the Kids
with Cancer Foundation, we chose to conduct a meta-review to provide an overview of the literature on the relationship
Kids Cancer Centre, Level between chronic illness and school experiences and outcomes. We also explored the associated
1 South, Sydney
medical, school, psychosocial and sociodemographic factors affecting the relationship between illness
Children’s Hospital, High
Street, Randwick, NSW and school experiences and outcomes.
2031, Australia. Conclusion Students with chronic illness demonstrate mixed school experiences and outcomes
E-mail:
a.lum@student.unsw.edu. that are often worse than students without chronic illness. Modifiable factors, such as students’
au engagement with school, may be novel yet appropriate targets of educational support to ensure
that these students reach their full schooling potential.
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662
Educational implications of chronic illness 647
• Examine the association between illness-related medical, further information (Karsdorp et al. 2007; Marino et al. 2012;
school, psychosocial and sociodemographic factors and Moser et al. 2013; Iyer et al. 2015; Landier et al. 2015).
school experiences and outcomes. We selected review articles based on the study population,
• Provide recommendations for educators, health professionals the predictor variables and the outcome variables. Reviews
and researchers. were eligible if
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662
648 A. Lum et al.
articles received a score of 1 for each of the 27 PRISMA criteria examined cancer, three examined CKD, three reviewed asthma
that the review met. Higher scores indicate higher quality. Two and there was one review each for heart disease and
authors (A. L. and M. A. B.) assessed each review separately. gastrointestinal diseases. The school experiences and outcomes
Disagreements were subject to assessment by a third author addressed in reviews included academic performance (nine
(C. E. W.) and resolved through discussion. We contacted reviews), grade repetition (four reviews), educational
authors to obtain further information where required. We did attainment (eight reviews), special education provision (nine
not assess narrative reviews using the PRISMA criteria. We reviews), school absenteeism (nine reviews), interpersonal
considered systematic reviews that met 14 or more PRISMA relationships (six reviews), educational engagement and/or
criteria as high quality and systematic reviews that met 13 or school connectedness (seven reviews), classroom behaviour
fewer PRISMA criteria and narrative reviews as low quality. (three reviews) and school reintegration (three reviews). The
These threshold criteria are based on the findings from an eligible reviews encompassed 172 original studies with more
examination of 236 reviews (using PRISMA criteria), which than 40 000 participants (only inclusive of sample sizes as
found that 13 PRISMA criteria were met in 60% or more of the reported in eligible reviews) (see Table S1 for references of
reviews, indicating 13 criteria are a valid standard for reviews original articles).
(Willis & Quigley 2011). Thus, reviews reporting 14 or more The quality assessment was consistent across the two
criteria were considered to report beyond the commonly reviewers, with an inter-rater reliability rate of 96.3% [nine
reported PRISMA criteria. disagreements across 243 criteria (27 PRISMA criteria for nine
We further assessed the quality of evidence and strength of reviews)]. Quality assessment indicated that most systematic
recommendations using the Grading of Recommendations reviews failed to meet multiple important components of the
Assessment, Development, and Evaluation (GRADE) system PRISMA criteria (Table S2), including the risk of bias within or
(Guyatt et al. 2008). Quality of evidence was based on the across studies, reported summary measures or described
methodological quality, risk of bias, inconsistencies, methods of handling data.
imprecisions and indirectness of pooled research for each Six reviews were considered high quality, and 12 were
outcome. Strength of recommendations was determined by considered low quality (Table S3). Review characteristics and
quality of evidence and the perceived risk-benefit ratio of the key findings from all reviews are presented in Table 1 by review
recommendations. quality. Throughout the results, we presented findings of
original articles where a trend for these findings was identified
in either high-quality reviews alone or in a combination of
Data extraction
high-quality and low-quality reviews. We presented findings by
We extracted the following characteristics of the eligible school experience or outcome. We also present these trends
reviews: type of review, number of studies included, period and other key relationships (i.e. identified once in a high-
of time in which journals or databases were searched, sample quality review) of school experiences and outcomes with
size, age of population, illness or other predictor variables and illness, medical, school, psychosocial and sociodemographic
education or other outcome variables (see Appendix A for the factors in Table 2. Using the information available in each
full list of items). review, we developed a summary of findings, rated the quality
of evidence and gave recommendations using the GRADE
system (Table 3). Because of insufficient reporting of findings,
Results
a quantitative analysis of results (i.e. a meta-analysis) could not
After removing duplicates, the search produced 1437 abstracts. be conducted. To compensate for the large quantity of original
Two authors found 32 articles appropriate for a full-text studies, we have stated the number (N) of original studies
review. Inter-rater reliability was 98.4% (23 disagreements out reporting the stated findings throughout the text and placed
of 1437 abstracts). We identified 18 of the 32 full-text articles the corresponding references in supplementary Table S1.
as eligible for the meta-review (Fig. 1).
Academic-based outcomes
Of the 18 reviews included, half were systematic reviews,
and the other half were narrative reviews. No meta-analyses Sixty-three articles within 17 reviews (including five high-
were found. One review examined both cystic fibrosis and quality reviews) examined the relationship between chronic
CKD, while all other reviews examined only one illness illness (including asthma, cancer, CKD, cystic fibrosis,
relevant to this review. Of these additional reviews, nine gastrointestinal disease and heart disease) and academic
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Educational implications of chronic illness 649
outcomes (including academic performance, grade repetition, outcomes (N = 6) compared with illnesses and treatments with
educational attainment and special education provision) no impact on cognition. For example, a 2003 study of 12 340
(Basch 2011; Daly et al. 2008; Davis 2005; Doroshow 2001; childhood cancer survivors found that the risk of special
Gerson et al. 2006; Gipson et al. 2007; Gurney et al. 2009; education provision and lower educational attainment was
Herrmann et al. 2011; Kortmann et al. 2003; Langeveld et al. highest among survivors of brain tumours who had received
2002; Marri & Buchman 2005; Milton et al. 2004; Moser et al. central nervous system implicated treatment before the age of
2013; Palmer & Leigh 2009; Pini et al. 2012; Taras & Potts- 6 years compared with cancer survivors of other diagnoses and
Datema 2005; Vance & Eiser 2002). Across all reviews, 31 out later age of diagnosis (Mitby et al. 2003). Lower socioeconomic
of the 63 original articles reported that academic outcomes status (SES) (N = 2) and physical sequelae of treatment (N = 2)
were worse among students with chronic illness compared were weakly associated with poorer academic outcomes. We
with healthy controls or population norms. Within high- identified academic and social support at school as associated
quality reviews, 14 out of 16 studies found that students with with better academic performance in comparison with those
asthma achieved equal or better outcomes as healthy peers, who did not report receiving support (N = 2).
while 10 out of 26 studies reported that students with cancer
achieved poorer outcomes in comparison with controls
Attendance
(Langeveld et al. 2002; Vance & Eiser 2002; Milton et al.
2004; Pini et al. 2012). Medical factors were strongly associated Twelve reviews (five high quality) including 88 original articles
with poorer outcomes among the cancer group. examined school absenteeism among students with chronic
A strong relationship between worse academic outcomes and illness (including asthma, cancer, CKD, cystic fibrosis,
greater disease severity (N = 7), younger age at diagnosis (N = 5) gastrointestinal disease and heart disease) (Doroshow 2001;
and treatments with stronger side effects (N = 6) emerged from Langeveld et al. 2002; Vance & Eiser 2002; Milton et al. 2004;
the original articles. Diseases (e.g. cancer and CKD) and/or Davis 2005; Marri & Buchman 2005; Taras & Potts-Datema
treatments (e.g. cranial radiation) that affect cognitive 2005; Gerson et al. 2006; Basch 2011; Herrmann et al. 2011;
functioning were also consistently linked to poorer academic Pini et al. 2012; Moser et al. 2013). Eighty-two of the original
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662
650 A. Lum et al.
Continues
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Educational implications of chronic illness 651
Table 1. (Continued)
Equal/better
Authors (date); country Sample characteristics Objectives; N of eligible studies Poorer outcomes† outcomes†
ALL, acute lymphoblastic leukaemia; CF, cystic fibrosis; CHD, congenital heart disease; CKD, chronic kidney disease; CNS, central nervous system; ESRD, end-
stage renal disease; IBD, inflammatory bowel disease; IQ, intelligence quotient; N, number.
†
Compared with control.
articles found that chronic illness was related to higher rates of reviews did not include a significant amount of research
school absenteeism compared with healthy peers or population examining links between greater school attendance and
norms. Greater absenteeism was reported across high-quality associated factors of chronic illness; however, there was some
and low-quality reviews for all illnesses except simple or evidence that greater support from school staff was associated
corrected heart disease (Doroshow 2001). Absenteeism profiles with fewer days of missed school (N = 2) (Rydstrom et al.
were reportedly different across illnesses. For example, 1999; Grieve et al. 2011). For example, accommodations that
students with cancer missed significant amounts of school in addressed school absenteeism, such as flexible attendance
the year following diagnosis that gradually returned to pre- arrangements, may have reduced some of the students’
diagnosis levels 8–10 years post diagnosis (Vance & Eiser concerns (Grieve et al. 2011).
2002), while students with asthma or cystic fibrosis missed
school on an irregular basis that accumulated to a significant
Interpersonal school experiences
amount of absenteeism over the school year (Milton et al.
2004; Moser et al. 2013). Six reviews (three high quality) including 27 articles examined
A greater amount of missed schooling was strongly the relationship between chronic illness (including asthma and
associated with greater disease severity (N = 20), frequent cancer) and school interpersonal relationships, such as those
hospitalization (N = 7), low SES (N = 5), belonging to a between peers and teachers (Vance & Eiser 2002; Gurney et al.
minority ethnic group (N = 5) and non-adherence to 2009; Basch 2011; Herrmann et al. 2011; Pini et al. 2012;
medication (N = 4). School absenteeism was also repeatedly Wakefield et al. 2015). Twenty original articles, the majority of
associated with students’ anxiety regarding returning to school which were qualitative research, indicated that chronic illness
as well as concerns about participating and keeping up with may be associated with poorer school relationships compared
school work (Mancini et al. 1989; Waters et al. 1989; Williams with students without chronic illness. For example, students
et al. 1991; Gregory et al. 1994; Sorgen & Manne 2002; with chronic illness have reported being teased or bullied about
Hedström et al. 2005; Mattsson et al. 2007). The eligible their body image, physical functioning and academic
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652 A. Lum et al.
Table 2. Trends and other key relationships between school experiences or outcomes and illness, and medical, school, psychosocial and sociodemographic
factors
Relationship between domain
and illness (N of studies with Factors associated with poorer Factors associated with average or
Domain of school finding/N of studies school experiences or outcomes better school experiences or outcomes
experiences or outcomes examining domain)† (N supporting original studies)† (N supporting original studies)†
Continues
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Educational implications of chronic illness 653
Table 2. (Continued)
CF, cystic fibrosis; CHD, congenital heart disease; CKD, chronic kidney disease; GD, gastrointestinal disease; N, number; SES, socioeconomic status.
†
Data only provided for outcomes where data can be reliably extracted.
performance (Hokkanen et al. 2004; Drew 2007); concerns Sorgen & Manne 2002); alterations in educational goals due to
about being different to peers, keeping up with peers and being illness (Lansky et al. 1986; Mayberry et al. 1992; Dolgin et al.
understood by peers (Decker et al. 2004; Duffey-Lind et al. 1999; Grinyer 2007); and a sense of being treated differently by
2006); and negative attitudes and behaviours (e.g. unsupportive, teachers (Wright et al. 1985; Duffey-Lind et al. 2006).
inflexible and dismissive) displayed by teachers and peers Students’ experiences with teachers were most often positive
(Hokkanen et al. 2004). The three high-quality reviews were and supportive, but negative experiences were found in 10–30%
limited to cancer, where each indicated poorer interpersonal of cases (Mayberry et al. 1992; Mitchell et al. 2006; Enskär & von
relationships compared with healthy peers or population norms Essen 2007; Moore et al. 2009). Poorer engagement experiences
(Vance & Eiser 2002; Wakefield et al. 2010; Pini et al. 2012). were linked to poorer peer relationships (N = 5); poorer school-
Consistent evidence in high-quality reviews on cancer oriented support from within the hospital (N = 4); and poorer
indicated that social support at the school (N = 6) was academic functioning (N = 2). Better school experiences were
associated with better relationships at school. Greater social linked to better school support from within the school or
support may be due to greater teacher and peer awareness of hospital, such as structured hospital-to-school liaison or
the illness (Mitchell et al. 2006). Greater disease severity was supportive adjustments to school work requirements (N = 6).
repeatedly linked to poorer peer relationships and social
isolation (N = 6).
Classroom behaviour
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654 A. Lum et al.
Table 3. Summary of evidence for recommendations using the Grading of Recommendations Assessment, Development, and Evaluation system
Methodology Recommendation
(study types) Evidence summary† Quality of evidence‡ (strength)
Academic-based outcomes
Five high-quality systematic reviews 1. Descriptive studies suggested 1. Very low quality given 1. Further research on
(Langeveld et al. 2002; Milton et al. that academic performance is serious associated factors (↑↑)
2004; Moser et al. 2013; affected in some, but largely risk of bias and inconsistent
Pini et al. 2012; Vance & Eiser 2002), dependent on associated factors. findings from lower level
three low-quality systematic reviews evidence studies
(Kortmann et al. 2003; Marri & Buchman 2. Descriptive studies suggested 2. Very low quality given 2. Further research on associated
2005; Taras & Potts-Datema 2005) that grade repetition rates are inconsistent findings from factors (↑↑)
and nine narrative reviews (Basch 2011; generally similar. lower level evidence studies
Daly et al. 2008; Davis 2005; Doroshow 3. Descriptive studies indicated 3. Low level quality given 3. Further research on associated
2001; Gerson et al. 2006; Gipson et al. comparable levels of educational inconsistent findings from factors (↑↑)
2007; Gurney et al. 2009; Herrmann attainment, but largely dependent lower level studies
et al. 2011; Palmer & Leigh 2009) on associated factors.
(cross-sectional, cohort, case–control 4. Descriptive studies indicated 4. Low quality given findings 4. Further research on associated
and qualitative studies) higher levels of special education from lower level evidence factors (↑↑)
provision, but largely dependent on studies
associated factors.
School attendance
Five high-quality systematic 1. Descriptive studies indicated 1. Moderate quality given 1. Educational support to
reviews (Langeveld et al. 2002; higher school absenteeism rates. consistent findings from increase school attendance (↑↑)
Milton et al. 2004; Moser et al. 2013; lower level evidence studies
Pini et al. 2012; Vance & Eiser 2002), 2. Descriptive studies identified 2. Moderate quality given 2. Further research on factors
two low-quality systematic reviews many factors associated with consistent findings from associated with greater
(Marri & Buchman 2005; Taras and greater absenteeism, but few lower level evidence studies attendance (↑↑)
Potts-Datema 2005) and five identified factors associated
narrative reviews (Basch 2011; with greater attendance.
Davis 2005; Doroshow 2001;
Gerson et al. 2006; Herrmann et al.
2011) (cross-sectional, cohort,
case–control and qualitative studies)
Interpersonal school experiences
Three high-quality systematic reviews 1. Descriptive studies 1. Very low quality given 1. Further research across all
(Pini et al. 2012; Vance & Eiser 2002; examining students with indirect (i.e. cancer or chronic illnesses (↑↑)
Wakefield et al. 2010) and three cancer and asthma generally asthma not representative
narrative reviews (Basch 2011; Gurney reported poorer peer of all chronic illnesses) yet
et al. 2009; Herrmann et al. 2011) (cohort, relationships. consistent findings from
case–control and qualitative studies) lower level evidence studies
2. Descriptive studies 2. Very low quality given i 2. Further research across
examining students with cancer ndirect (i.e. cancer or all chronic illnesses (↑↑)
and asthma generally reported asthma not representative
poorer teacher relationships. of all chronic illnesses) yet
consistent findings from lower
level evidence studies
Engagement with school
Four high-quality systematic 1. Qualitative studies indicated 1. Very low quality of evidence 1. Further research using
reviews (Moser et al. 2013; challenges associated with given serious risk of bias quantitative methodology (↑↑)
Pini et al. 2012; Vance & Eiser students’ engagement with and inconsistent findings
2002; Wakefield et al. 2010), school. from lower level findings
one low-quality systematic
review (Marri & Buchman 2005)
and two narrative reviews
(Basch 2011; Doroshow 2001)
(cohort and qualitative studies)
Classroom behaviour
Continues
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Educational implications of chronic illness 655
Table 3. (Continued)
Methodology Recommendation
(study types) Evidence summary† Quality of evidence‡ (strength)
Two high-quality systematic 1. Descriptive studies examining 1. Very low quality given 1. Further research across all
reviews (Vance & Eiser 2002; students with cancer generally indirect (i.e. cancer not chronic illnesses (↑↑)
Wakefield et al. 2010) and reported that classroom behaviour representative of all chronic
one narrative review (Herrmann is generally appropriate but may illnesses) and inconsistent
et al. 2011) (case-controlled, cohort be affected in some. findings from lower level
and qualitative studies) evidence studies
School reintegration
Two high-quality 1. Qualitative reports suggested 1. Very low quality given 1. Educational support for
systematic reviews (Vance & Eiser that students with cancer have indirect (i.e. cancer not all students experiencing
2002; Wakefield et al. 2010) concerns about reintegrating into representative of all chronic ongoing school absenteeism (↑?)
and one narrative review school. illnesses) yet consistent
(Herrmann et al. 2011) findings from lower level
(qualitative studies) evidence studies
and challenging school reintegration experiences (Wakefield illness and lower attendance rates. The findings relating to
et al. 2010; Herrmann et al. 2011; Pini et al. 2012). School academic, interpersonal and behavioural domains were mixed.
reintegration was not examined in other illnesses. Students Students’ engagement and reintegration experiences were
reported that returning to school promoted normalcy but was investigated primarily using qualitative methods, and a number
also met with nervousness in re-joining peers and keeping up of challenges were identified among the largely positive
academically (Manne & Miller 1998; Decker et al. 2004; Koch experiences. Poorer school experiences and outcomes were
et al. 2004; Suppiah et al. 2005; Duffey-Lind et al. 2006; Drew consistently linked to greater disease severity, stronger
2007). treatment side effects and lower SES. Effective models of
These experiences appeared to be strongly linked to the school support were repeatedly associated with school success
model of support available in the school and hospital. Evidence among students with chronic illness. Further research
from the literature indicated that a good model included examining ameliorating factors to prevent chronic illness
structured communication and collaboration pathways causing poorer school experiences and outcomes is warranted
between hospital, school and family (such as that performed to determine the most effective model of school support.
by school liaison personnel) (N = 7); a clear understanding of Our research highlighted that school support is strongly
the educational implications of the illness and the roles and associated with better school experiences and outcomes among
responsibilities of teachers, school psychologists, nurses and students with chronic illness. A combination of research and
medical specialists in facilitating a successful return to school government-initiated services exists to support the educational
(N = 4); and flexible adjustments that allowed the ill child to needs of students with chronic illness, including homebound
attend partial school days or reduce homework load (N = 2). education, school reintegration programmes and individualized
education plans (Boonen & Petry 2012; Centre for Disease
Control and Prevention 2015; Kupper 2000; Prevatt et al. 2000).
Discussion
While encouraging, there are limitations in some of these
This meta-review aimed to aggregate the available evidence services. For example, homebound education does not
examining the impact of six chronic illnesses on school consistently lead to better academic outcomes and can be
experiences and outcomes in 18 reviews incorporating 172 socially isolating for some students (Bessell 2001; Searle et al.
studies of more than 40 000 students. The reviews covered 2003). Alternative support options that account for academic
academic, attendance, interpersonal, engagement, reintegration and social needs must be considered.
and behavioural domains. The quality of review articles varied, School practices promoting students’ engagement with
yet all domains included at least two high-quality reviews. We school may be a viable support approach that addresses the
found the most consistent evidence for a link between chronic academic and social needs of students with chronic illness.
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662
656 A. Lum et al.
Student engagement is the affective, behavioural, cognitive and bias, summary measures or methods of data handling. These
academic relationship each student has with school (Appleton limitations may reduce the reliability of findings that may lead
et al. 2008). Engagement with school is a core factor promoting to further discrepancy in a field already containing inconsistent
greater academic performance, school attendance and findings (Boekaerts & Röder 1999).
psychosocial health (Pianta et al. 2012). We identified Many reviews also identified common limitations of the
compelling evidence linking supportive teacher attitudes with original articles that they examined. Sampling limitations
greater levels of engagement with school among students with included small sample sizes, high sample heterogeneity, non-
chronic illness (Vance & Eiser 2002; Milton et al. 2004; Marri representative samples, potential recruitment-based sampling
& Buchman 2005; Wakefield et al. 2010; Grieve et al. 2011; bias and the inclusion of multiple stakeholders, including those
Moser et al. 2013). School and teacher support aiming to who may not reliably represent students’ perspectives (Vance
engage students with school, such as supportive teacher & Eiser 2002; Milton et al. 2004; Wakefield et al. 2010; Moser
attitudes and practices that promote school belonging and et al. 2013). Original articles were also limited by their use of
model the long-term value of school, may complement the differing criteria to define absenteeism and each illness,
traditional academic focus of other support practices, such as especially for asthma (Milton et al. 2004; Taras & Potts-
homebound learning support. Datema 2005), potentially limiting the validity of the findings
Teacher focused interventions may lead to the most effective presented in the reviews.
approach to improving students’ academic and social
functioning and engagement with school. Teacher training
Recommendations for practice
programmes aiming to improve teachers’ knowledge of and
attitudes towards students with chronic illness may promote This meta-review highlighted the breadth of challenges
more supportive teacher attitudes through the reduction of associated with chronic illness in the school environment,
teachers’ uncertainty about the impact of chronic illness (West and thus the need for school support that caters for academic,
et al. 2013; Hinton & Kirk 2015). In their 2015 review of 61 social, emotional and physical needs. A co-ordinated and
studies examining teachers’ perspective of chronic illness in collaborative approach involving educators, healthcare
school, Hinton and Kirk (2015) found that most teachers do professionals, psychologists, and the student and their family
not receive professional training on chronic illness and is necessary to meet this range of needs (Shiu 2001; Shaw et al.
schooling and that they often ‘lack the knowledge and 2010). Specifically, teachers have stated that healthcare
confidence to meet pupils’ medical, academic and social professionals are important and preferred sources of health
needs’. Improved communication and collaboration between information when compared with public media and parents
health and education sectors are required to ensure that (Shiu 2004; Hinton & Kirk 2015). School psychologists also
teachers’ educational practices towards students with chronic play a critical role in assessing and supporting students’
illness are supportive across all needs (Hinton & Kirk 2015). cognitive and emotional needs (Palmer & Leigh 2009). Daily
For example, health professionals may deliver training for management of the students’ medical, psychological and
educators to manage the needs associated with chronic illness educational needs may be best achieved by students, their
(Brown et al. 2011; Hinton & Kirk 2015). families and teachers (Shaw et al. 2010).
The findings of this meta-review also suggested that students
Limitations
with chronic illness need individualized educational plans
This meta-review had some limitations. The broad nature of (IEPs) that clearly communicate the students’ unique needs
the search terms and eligibility criteria allowed us to collect the and how these needs can be met by tailored support within the
greatest number of reviews but also resulted in a heterogeneous school. The individualized education plan and 504 plan that
participant group. As we reviewed reviews, we may have are available in the USA are examples of these policy
missed some findings in the original articles that were not documents (Kupper 2000). Our findings and concurrent
included in the reviews. research indicate that IEPs for students with chronic illness
Half of the reviews were not systematic, limiting the could be enhanced if they incorporated information that
reliability of the findings. Only two systematic reviews received extended beyond learning/curriculum outcomes and also
PRISMA scores of 20 or above, a threshold previously used to accounted for the physical, psychological, and social health
categorize reviews as ‘high quality’ (Willis & Quigley 2011; and functioning needs of the student (i.e. taking a
Wakefield et al. 2015). Few reviews presented data on risk of biopsychosocial approach) (O’Connor et al. 2015). The
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Educational implications of chronic illness 657
additional biopsychosocial components that are relevant to the that although the quality of evidence is not high, educational
IEP may include students’ illness; its academic, physical, social needs of students with chronic illness appear to be higher than
and emotional implications; the specific manifestations unique students without chronic illness, these needs are of great
to the child; and the school-based healthcare management significance for healthy development and educational support
(Miller & Wood 1991). A biopsychosocial-inclusive IEP will is likely to have largely positive implications with few risks for
help teachers engage in practices that promote healthy negative consequences.
psychosocial development in the school (Miller & Wood 1991; We also suggest that researchers evaluate the practices that
O’Connor et al. 2015). To achieve the most effective support we have recommended. Specifically, we encourage
plan, the biopsychosocial component of the IEP may undergo examination of the feasibility of collaborative support across
collaborative development involving the school (i.e. educators health, education and psychosocial sectors in the context of
and school psychologists) and hospital personnel (e.g. paediatric barriers associated with the sectors’ bureaucracy and time,
specialists, clinical nurse consultants and social workers) financial and personnel resources (Shaw et al. 2010).
(Prevatt et al. 2000; Shiu 2004); however, research is required
to examine the feasibility and effectiveness of this approach. Conclusion
Our meta-review has provided a comprehensive insight into
Recommendations for research the state of research examining the impact of chronic illness on
We examined outcomes within each review to provide students’ educational experiences and outcomes. Students with
recommendations for research in line with the GRADE system chronic illness may miss long periods of school, underperform
(Table 3). The GRADE recommendations were limited by low- academically and experience challenges with friendships and
quality studies. Future researchers may wish to invest in engaging with school. Teachers may play a critical role in
prospective longitudinal cohort studies with a comparison protecting students with chronic illness from disengaging
group using validated questionnaires to produce the highest academically and socially at school. Health professionals can
quality evidence, but other observational methods may be also support students’ educational functioning by collaborating
warranted to promptly address research gaps. Research gaps with schools to identify strategies that accommodate for
are particularly prevalent in quantitative research addressing disease symptoms, hospitalizations and cognitive impairments.
school experiences, such as student engagement. Furthermore, Continued research is required to develop evidence-based
while disease severity and other medical variables were educational support that recognizes students’ complete school
consistently linked to poorer outcomes, there was less evidence needs and ensures that these students thrive in the school
regarding the mechanisms through which these variables affect environment and beyond.
school outcomes (e.g. cognitive deficits and psychosocial
functioning). We encourage researchers designing future
studies to examine multiple school experiences and outcomes
Key messages
alongside medical, school, psychosocial and sociodemographic • School students with chronic illness often have poorer
covariates. This would allow a more nuanced examination of school experiences and outcomes than students without
the associations between social, emotional, academic and chronic illness.
physical variables affecting students with chronic illness. • Disease severity, stronger treatment side effects and lower
We gave strong recommendations for the need for socioeconomic status are consistently associated with
intervention-based research when the quality of evidence in worse school experiences and outcomes.
outcomes of included reviews was low to moderate (Table 3). • Supportive teacher attitudes can promote engagement
Intervention development, piloting and evaluation should with school among students with chronic illnesses, which
target a range of school experiences and outcomes. may improve academic, social and other school outcomes.
Quantitative and qualitative assessments provided by students, • Significant improvement to the quality of research, and
parents, teachers and peers over multiple time points will more quantitative research examining students’ subjective
further enhance the quality of intervention research. We school experiences, is required for an improved
encourage researchers to examine the intervention costs in understanding of the educational implications of chronic
addition to intervention effectiveness and feasibility (Balshem illness.
et al. 2011). Our strong recommendations reflect our belief
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658 A. Lum et al.
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Appendix A. Data extraction list
Hewett, K. (1990) Social adjustment of children successfully treated
1. What is the reference?
for cancer. Journal of Pediatric Psychology, 15, 359–371.
Suppiah, R., Patton, M. & McGrath, P. (2005) Re-entering life: 2. What type of review was conducted?
paediatric acute myeloid leukaemia at one year post treatment. The 3. What country was the review conducted in (main author)?
Australian Journal of Holistic Nursing, 12, 23–34. 4. What were the objectives of the literature review?
Suris, J.-C., Michaud, P.-A., Akre, C. & Sawyer, S. M. (2008) Health 5. What years were included in the search?
risk behaviors in adolescents with chronic conditions. Pediatrics, 6. How many databases were searched?
122, e1113–1118. 7. What databases were searched?
Taras, H. & Potts-Datema, W. (2005) Childhood asthma and student
8. Were other forms of data collection (identifying other
performance at school. The Journal of School Health, 75, 296–312.
studies) were used prior to screening articles (i.e. grey
van der Lee, J. H., Mokkink, L. B., Grootenhuis, M. A., Heymans, H. S.
& Offringa, M. (2007) Definitions and measurement of chronic literature and author contact)?
health conditions in childhood. JAMA: The Journal of the American 9. What were the search terms?
Medical Association, 297, 2741–2751. 10. What was the exact date of the final search?
Vance, Y. H. & Eiser, C. (2002) The school experience of the child 11. What were the inclusion criteria?
with cancer. Child: Care, Health and Development, 28, 5–19. 12. What were the exclusion criteria?
Wakefield, C. E., McLoone, J., Goodenough, B., Lenthen, K., Cairns, 13. How many articles were collected from the database
D. R. & Cohn, R. J. (2010) The psychosocial impact of completing
search?
childhood cancer treatment: a systematic review of the literature.
14. How many articles are included in the review? What is the
Journal of Pediatric Psychology, 35, 262–274.
Wakefield, C. E., Butow, P. N., Aaronson, N. A., Hack, T. F., Hulbert- percentage (of initial search)?
Williams, N. J., Jacobsen, P. B. & Committee, I. P.-O. S. R. (2015) 15. Were any other methods of identifying articles used after
Patient-reported depression measures in cancer: a meta-review. The the initial database search was conducted?
Lancet Psychiatry, 2, 635–647. 16. What were the reasons for excluding studies?
Waters, B. G., Said, J., Cousens, P. & Stevens, M. (1989) Behavioral
17. What types of studies were included (i.e. randomized
side-effects of CNS prophylaxis. Journal of the American Academy of
Child and Adolescent Psychiatry, 28, 299–300.
controlled and correlational)?
West, A. M., Denzer, A. Q., Wildman, B. G. & Anhalt, K. (2013) 18. Was a quality assessment of original articles used?
Teacher perception of burden and willingness to accommodate
children with chronic health conditions. Advances in School Mental a. What was its name/reference?
Health Promotion, 6, 35–50. b. How was quality assessed?
Williams, K. S., Ochs, J., Williams, J. M. & Mulhern, R. K. (1991) c. What was the range of scores?
Parental report of everyday cognitive abilities among children d. What was the average score?
treated for acute lymphoblastic leukemia. Journal of Pediatric e. Was quality assessment considered when interpreting
Psychology, 16, 13–26.
the findings of the study?
Willis, B. H. & Quigley, M. (2011) The assessment of the quality of
reporting of meta-analyses in diagnostic research: a systematic 19. What illness/es was/were examined as independent
review. BMC Medical Research Methodology, 11, 163. variables?
Wright, M., Jarvis, S., Wannamaker, E. & Cook, D. (1985) Congenital
20. What treatment type/s was/were examined as independent
heart disease: functional abilities in young adults. Archives of
Physical Medicine and Rehabilitation, 66, 289–293.
variables?
Young-Hyman, D. (2003) Diabetes and the school-age child and 21. What age group was examined?
adolescent: facilitating good glycemic control and quality of life. 22. Were any other independent variables specifically
In R. T. Brown (ed.) Handbook of Pediatric Psychology in examined (i.e. demographic features)?
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662
662 A. Lum et al.
23. What was the range of sample sizes in original articles 33. What were the conclusions made?
included? 34. Was the role of school staff outlined in any way?
24. How many children were included in the review in 35. Was the role of medical staff outlined in relation to
total? education?
25. What are the primary education variables examined? 36. Was the role of parents outlined in relation to education?
26. Are education variables the primary or secondary variables 37. Was the role of psychosocial support staff outlined in
of the review? relation to education?
27. What other, non-educational outcome variables are 38. Additional comments.
examined separately in the review?
28. What were the findings?
29. What risk factors to poor educational outcomes are
outlined?
30. What facilitative factors to positive educational outcomes Supporting information
are outlined?
Additional Supporting Information may be found online in the
31. Has data been included in the review (including ES, CI, supporting information tab for this article.
sample characteristics and means)?
Supplementary Table 1. Original study references of key
a. Are data presented as a meta-analysis or separately for findings
each study? Supplementary Table 2. Number and percentages of PRISMA
b. Are data comparable with other reviews (i.e. same criterion met by systematic reviews (N = 9)
measure used, similar study and control group)? Supplementary Table 3. Methodological characteristics,
number of included articles, and PRISMA scores of systematic
32. What limitations of the review did the author outline? reviews.
© 2017 John Wiley & Sons Ltd, Child: care, health and development, 43, 5, 645–662