Education support services for improving school engagement and academic performance of children and adolescents with a chronic health condition

Abstract

Background

Chronic health conditions in children and adolescents can have profound impacts on education, well‐being and health. They are described as non‐communicable illnesses that are prolonged in duration, do not resolve spontaneously, and rarely cured completely. Due to variations in the definition of chronic health conditions and how they are measured prevalence estimates vary considerably and have been reported to be as high as 44% in children and adolescents. Of young people with a chronic health condition, an estimated 5% are affected by severe conditions characterised by limitations to daily activities impacting their ability to attend school. School attendance is important for academic and social skill development as well as well‐being. When children and adolescents are absent from school due to a chronic health condition, school engagement can be affected. Disengagement from school is associated with poorer academic achievement, social‐emotional functioning and career choices. Education support services for children and adolescents with chronic health conditions aim to prevent disengagement from school, education and learning during periods where their illness caused them to miss school. However, there is limited evidence on the effectiveness of educational support interventions at improving school engagement and educational/learning outcomes for children and adolescents with chronic health conditions.

Objectives

To describe the nature of educational support interventions for children and adolescents with a chronic health condition, and to examine the effectiveness of these interventions on school engagement and academic achievement.

Search methods

We searched eight electronic databases which span the health/medical, social sciences and education disciplines between 18 and 25 January 2021: Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid), Embase (Ovid). CINAHL (EBSCO), PsycINFO (EBSCO), ERIC (Education Resources Information Center), Applied Social Sciences Index and Abstracts: ASSIA (ProQuest), and PubMed (from 2019). We also searched five grey literature trials registers and databases between 8 and 12 February 2021 to identify additional published and unpublished studies, theses and conference abstracts, as well as snowballing reference lists of included studies.

Selection criteria

Randomised controlled trials (RCTs), controlled before‐and‐after studies and interrupted time series studies that met the inclusion criteria were selected. Other inclusion criteria were: participants ‐ must include children or adolescents (aged four to 18 years) with a chronic health condition, intervention ‐ must include educational support, outcomes ‐ must report the primary outcomes (i.e. school engagement or academic achievement) or secondary outcomes (i.e. quality of life, transition to school/school re‐entry, mental health or adverse outcomes).

Data collection and analysis

Two people independently screened titles and abstracts, and full‐text articles, to identify included studies. Where disagreements arose between reviewers, the two reviewers discussed the discrepancy. If resolution was unable to be achieved, the issues were discussed with a senior reviewer to resolve the matter. We extracted study characteristic data and risk of bias data from the full texts of included studies using a data extraction form before entering the information into Review Manager 5.4.1. Two people independently extracted data, assessed risk of bias of individual studies and undertook GRADE assessments of the quality of the evidence.

Meta‐analysis was not possible due to the small number of studies for each outcome. Our synthesis, therefore, used vote‐counting based on the direction of the effect/impact of the intervention.

Main results

The database searches identified 14,202 titles and abstracts. Grey literature and reference list searches did not identify any additional studies that met the inclusion criteria. One hundred and twelve full‐text studies were assessed for eligibility, of which four studies met the eligibility criteria for inclusion in the review. All studies were randomised controlled studies with a combined total of 359 participants. All included studies were disease‐specific; three studies focused on children with cancer, and one study focused on children with Attention Deficit Hyperactivity Disorder (ADHD).

There was evidence that education support improved school engagement with three of four studies favouring the intervention. Three studies measured academic achievement but only two studies provided effect estimates. Based on the vote‐counting method, we found contradictory results from the studies: one study showed a positive direction of effect and the other study showed a negative direction of effect. One study measured transition back to school and found a positive impact of education support favouring the intervention (SMD 0.18, 95% CI ‐0.46 to 0.96, no P value reported). The result came from a single study with a small sample size (n = 30), and produced a confidence interval that indicated the possibility of a very small or no effect. The overall certainty of evidence for these three outcomes was judged to be 'very low'.

Two of four studies measured mental health (measured as self‐esteem). Both studies reported a positive impact of education support interventions on mental health; this was the only outcome for which the overall certainty of evidence was judged to be 'low' rather than 'very low'.

No studies measured or reported quality of life or adverse effects.

Risk of bias (selection, performance, detection, attrition, reporting and other bias) was assessed using the Cochrane risk of bias tool for randomised trials (version 1). Overall risk of bias for all studies was assessed as 'high risk' because all studies had at least one domain at high risk of bias.

Authors' conclusions

This review has demonstrated the infancy of quality research on the effectiveness of education support interventions for children and adolescents with chronic health conditions. At best, we can say that we are uncertain whether education support interventions improve either academic achievement or school engagement. Of the secondary outcomes, we are also uncertain whether education support interventions improve transition back to school, or school re‐entry. However, we suggest there is some evidence that education support may slightly improve mental health, measured as self‐esteem. Given the current state of the evidence of the effectiveness of education support interventions for children and adolescents with chronic health conditions, we highlight some important implications for future research in this field to strengthen the evidence that can inform effective practice and policy.

Plain language summary

Do services to support the education of children and teenagers with chronic health conditions help to engage them more in school activities and improve learning outcomes?

Key Messages

‐ We are still unclear of the effect of education support interventions on school engagement, learning outcomes and the likelihood of students to return to school (during periods of wellness).

‐ There is some evidence that education support interventions may improve mental health slightly, as measured in two studies as self‐esteem, but quality of life was not measured in the studies.

‐ We need more good quality evidence, including studies undertaken beyond the USA, to help us know whether these interventions work, and what best practice models would look like.

What are education support services and why might they be helpful for children and teenagers with a chronic health condition?

For some children and teenagers, having a chronic health condition can impact on their school attendance, participation and engagement. This can reduce their ability to keep up with their peers and reach their full potential. Education support services for children and adolescents with chronic health conditions aim to prevent them from becoming disengaged from school and their education and learning when they miss school due to illness. These services can take place in hospital, regular school or community, and may target the child, family, school, hospital, community or a combination of these. They can be delivered or co‐ordinated by the parents/carers, hospital, regular school or by community‐based organisations.

What did we want to find out?

We wanted to describe educational support interventions for children and adolescents with a chronic health condition and find out what effect they had on school engagement and learning outcomes, in particular. We also wanted to see if these services had an effect on mental health and quality of life.

What did we do?

We searched health, education and social science databases, as well as other registries to find published and unpublished studies. We included studies that included children aged four to 18 years with a chronic health condition who were involved in an educational support programme. The study needed to have reported on school engagement, academic achievement, school re‐entry, mental health, quality of life or adverse outcomes to be included in the summarised evidence.

What did we find?

We found four studies that met our inclusion criteria. All studies were randomised controlled studies with a combined total of 359 participants. All four studies were from the United States of America. Three studies included children with cancer, and one study focused on children with Attention Deficit Hyperactivity Disorder (ADHD). Two of the cancer studies looked at education support programmes focused on the effect of cancer treatment on the child's memory and how fast they processed information. Mental health was measured as self‐esteem in two studies. School re‐entry was measured in one study; and quality of life was not measured in any included study. No adverse effects were measured or reported in any of the included studies.

Main results

Overall, we are uncertain whether education support interventions improve either school engagement or academic achievement. We are also uncertain whether education support interventions improve transition back to school/school re‐entry. However, we suggest there is some evidence that education support may slightly improve mental health, measured as self‐esteem. Quality of life was not measured or reported in any of the included studies.

What are the limitations of the evidence?

Overall, the certainty of the evidence was judged to be low for the mental health outcome and very low for academic achievement, school engagement and return to school. The main reasons for this were that there were different types of education support programmes trialed, conflicting results, different types and sometimes indirect measures of the outcomes across studies, a large amount of missing data and there was not enough information in the reporting of outcome data. These problems, and the small number of studies included, means we cannot make clear statements about the effects of these programmes.

How up‐to‐date is the evidence?

The evidence is up‐to‐date to January 2021.

Summary of findings

Summary of findings 1. Summary of findings.

Education support compared with standard or community care or waiting list, for children and young people with chronic health conditions
Population: children and young people with chronic health conditions Settings: schools or health centres Intervention: education support Comparison: standard or community care or waiting list
Outcomes	Direction of effect/impact (Positive, equivocal or negative)	No of Participants (studies)	Certainty of the evidence (GRADE)	Comments
School engagement (follow‐up range 6 months to 30 months)	There was evidence that education support improved school engagement with 3 of 4 studies favouring the intervention.	269 (4)	⊕⊝⊝⊝ very lowa,b,c	We are uncertain whether education support interventions improve school engagement.
Academic achievement (follow‐up range 6 months to 30 months)	Three studies measured academic achievement but only two studies provided effect estimates. Based on the vote counting method, we found contradictory results from the studies: one study showed a positive direction of effect and the second study showed a negative direction of effect.	227 (3)	⊕⊝⊝⊝ very lowa,c,d	We are uncertain whether education support interventions improve measures of academic achievement.
Transition back to school (follow‐up 9 months)	One study measured transition back to school and found a positive impact of education support favouring the intervention (SMD 0.18, 95% CI ‐0.46 to 0.96, no P value reported). The result came from a single study with a small sample size (n = 30), which produced a confidence interval that indicated the possibility of a very small or no effect.	30 (1)	⊕⊝⊝⊝ very lowa,c*	We are uncertain whether education support improves transitions back to school following hospitalisation for children and young people with chronic health conditions.
Mental health (follow‐up range 6 to 9 months)	Two of 4 studies measured mental health (measured as self‐esteem). Both studies reported a positive impact of education support interventions on mental health, and was the only outcome for which the overall certainty of evidence was judged to be low rather than very low.	163 (2)	⊕⊕⊝⊝ lowa,c	Some evidence that education support may improve mental health (measured as self‐esteem) slightly.
Quality of life		0 (0)		No studies measured or reported this outcome.
Adverse effects		0 (0)		No studies measured or reported this outcome.
GRADE Working Group grades of evidence High quality: Further research is very unlikely to change our confidence in the estimate of effect. Moderate quality: Further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimate. Low quality: Further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate. Very low quality: We are very uncertain about the estimate.

a. Downgraded one level due to limitations of risk of bias. The proportion of information from results at high risk of bias is sufficient to affect the interpretation of results: all studies had at least one domain at high risk of bias.

b. Downgraded one level for indirectness from addressing a restricted version of the main review question in terms of the varied types of interventions and outcomes used.

c. Downgraded one level for serious imprecision. All studies had small sample sizes. c* Downgraded an additional level (to very serious): imprecision due to a reliance on a single confidence interval that indicates the possibility of a very small or no effect.

d. Downgraded an additional level due to inconsistency. E.g. contradictory results from studies: half of the studies showed a positive direction of effect and half showed a negative direction of effect.

Background

Description of the condition

Chronic health conditions in children and adolescents can have profound impacts on education as well as health and well‐being. While there are many different definitions of what constitutes a chronic health condition or chronic disease, the World Health Organization (WHO) described chronic diseases as being of "long duration and generally slow progression" (WHO 2013). O'Halloran 2004 provided a more detailed definition and suggested that chronic diseases may have a duration that has lasted, or is expected to last, at least six months; have a pattern of recurrence or deterioration; have a poor prognosis; and produce consequences or sequelae that impact on the individual's quality of life. The Centers for Disease Control and Prevention defined chronic diseases as "non‐communicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely" (CDC 2009). As the burden of disease globally shifts towards non‐communicable diseases as a result of a reduction in communicable diseases in both developed and developing countries, chronic diseases have become the leading cause of death (WHO 2005; Yach 2004). Nonetheless, research that focuses specifically on children and adolescents with chronic health conditions in developing countries is limited; however, there is evidence to suggest that chronic conditions such as obesity and type 2 diabetes are experienced globally (Kyu 2016).

Children and adolescents now experience higher levels of chronic health conditions than in the past (Canter 2012; Newacheck 1992; Van Cleave 2010), with increasing rates noted in both developed and developing countries (Michaud 2007). In part, this reflects technological and medical advances that result in children now living longer with complex health conditions. It also reflects increases in the incidence of certain conditions such as chronic inflammatory bowel disease, allergy, type 1 and 2 diabetes, together with increasing diagnosis of developmental and mental disorders in children (e.g. autism) and adolescents (e.g. eating disorders, depression and anxiety) (Sawyer 2007). A wide range of different chronic conditions affect children and adolescents, including conditions of congenital onset (e.g. cystic fibrosis), acquired illnesses (e.g. asthma, cancer), mental and developmental disorders, and disabilities (e.g. cerebral palsy).

Due to the variety of both different chronic conditions and definitions, it is not easy to gain clear figures for the prevalence of chronic health conditions in children and adolescents. One systematic review by Van der Lee 2007 reviewed 32 studies that reported prevalence rates of chronic health conditions in children and adolescents and reported prevalence estimates of chronic health conditions between 22% and 44%; the majority of these studies were from the US, one was from a middle‐income country (i.e. 7.8% of children aged zero to seven years in Jordan had a chronic disease or disability), and none were from low‐income countries. Further, not all chronic conditions have poor sequelae. Sequelae appear to be related to the severity of the chronic health condition, and the impact on cognitive and functional capacities. Of people with a chronic health condition, an estimated 5% are affected by severe conditions characterised by limitations in daily activities and frequent bother (Newacheck 1992). In one large New Zealand study of over 9000 high‐school students (most of whom were aged 13 to 17 years), 18% reported having a chronic health condition (Denny 2014). As many as 28% of students with a chronic health condition reported that their condition negatively impacted their daily activities and 8% noted difficulties in socialising due to their chronic health condition (Denny 2014), thus emphasising the importance of considering the impact of chronic health conditions on daily life and functioning in addition to the prevalence of these conditions.

The impact of chronic health conditions on children's quality of life is described more specifically by Martinez 2009 who suggested that, besides the physiological consequences of chronic health conditions, these conditions for children carry secondary psychological and educational consequences. Existing research identifies a wide range of impacts of chronic health conditions for children and young people including effects on school absenteeism, school engagement, school functioning, academic and social‐emotional development, and well‐being.

For example, rates of school absenteeism appear to be higher for children and adolescents with chronic health conditions compared with unaffected peers. Daraganova 2013 found that 18% of students (aged six to seven years) with a medical condition or disability that lasted for at least six months had missed school for three or more days. In comparison, 14% of healthy peers had missed school for three or more days. The same author found that 41% of children aged six to seven years with a medical condition were absent from school for one or two days compared with 33% of healthy peers. McDougall 2004 found that children with a chronic illness were absent from school for a mean of 16 days as compared with three days for their healthy peers.

Further, it should be kept in mind that some, but not all, children and adolescents with a chronic health condition miss school due to their illness. Both the presence and the severity of chronic health conditions appear related to the extent of school absenteeism. For instance, Moonie 2006 found that children and adolescents with asthma missed a mean of 9.2 days of school per year compared with children and adolescents without asthma who missed 7.9 days of school per year. However, when severity of asthma was considered, pupils with severe persistent asthma were away from school more frequently (11.6 days) than pupils with moderate persistent asthma (10.3 days), mild persistent asthma (11.3 days), mild intermittent asthma (8.5 days) and without asthma (7.9 days). While these differences for asthma appear to be small, Shaw 2008 noted that some chronic conditions take a profound toll on school attendance. For example, "children being treated for chronic childhood leukaemia miss an average of 40 school days during the first stages of treatment and have inconsistent attendance for 3 years that follow" (Shaw 2008, p. 74).

School attendance, which is generally higher for primary school children compared with secondary school students (Hancock 2013), is important for academic and social skill development. When children and adolescents are absent from school due to a chronic health condition, school engagement can be affected, as can the achievement of important educational milestones and the acquisition of knowledge and skills. Chronic health conditions and severity are also associated with academic achievement. For instance, Cadman 1987 showed that the odds of not doing well at school for children and adolescents with a chronic health condition alone were not significant (odds ratio 1.3), but were significant for students with a chronic health condition and a disability (odds ratio 4.7).

Some chronic health conditions such as cerebral palsy may have an associated cognitive impairment that can directly affect school functioning. However, children and adolescents with chronic health conditions that are not associated with a cognitive impairment can still experience difficulties at school due to school absenteeism, adjustment and emotional problems, and the impact of the chronic health condition and its treatment on the individual such as fatigue (Madan‐Swain 2008). Subsequently, children with a chronic health condition are at greater risk of a range of negative school‐related outcomes such as poorer academic achievement and lower motivation to do well at school (Forrest 2011). Similar to school absenteeism, the degree of these associations may vary across chronic health conditions and according to severity of these conditions. For example, asthma is a common chronic health condition, affecting approximately 12% of children and adolescents aged zero to 14 years in Australia (Australian Bureau of Statistics 2006). It is also the most common reason for hospitalisation in this age group (Australian Institute of Health and Welfare 2005). While children and adolescents with asthma report lower school functioning (e.g. experience greater difficulty in concentrating, forgetting things, keeping up with school work, missing school) than healthy peers (Varni 2007), it has been found that the odds of graduating from high school or being employed were similar for students with asthma compared with their healthy counterparts (Maslow 2011). By contrast, students with a non‐asthmatic chronic health condition (e.g. cancer) were less likely to graduate or be employed compared with healthy peers or students with asthma (Maslow 2011). Compared with asthma, cancer is far less common. The incidence of childhood cancer in the US was 14.3 per 100,000 children in 2007, while over 175,000 new cases of childhood cancers were reported worldwide in 2008 (American Cancer Society 2011). Cancer is a serious chronic disease, contributing to 16% of deaths in children and adolescents aged one to 14 years (Australian Institute of Health and Welfare 2005). Children and adolescents with cancer report poorer school functioning and lower health‐related quality of life compared with their healthy peers (Varni 2007). Children and adolescents with cancer may miss school because of acute treatment or because of complications of the cancer and its treatment (or both) (Prevatt 2000). A number of studies reported that children and adolescents with cancer encountered higher rates of school absenteeism compared with healthy students or students with other chronic conditions (refer to Vance 2002 for a review on this topic).

Education support services for children and adolescents with chronic health conditions who miss school due to their illness aim to prevent them from becoming disengaged from school, education and learning. Disengagement from school is associated with poorer academic achievement, social emotional functioning and career choices (Abbott‐Chapman 2013; Bond 2007; Hancock 2013). Education support services provide academic support with the goal that students are able to perform either as well as their non‐ill counterparts or to their fullest potential.

Importantly, all children and adolescents have a right to education, including children and adolescents who require hospitalisation due to a chronic illness (Ratnapalan 2009). Access to education is a fundamental human right for children and adolescents that is enshrined in international law. According to international law, countries have obligations to make available primary education that is compulsory and free to all, secondary education that is generally available and accessible to all, and access to educational programmes on the basis of non‐discrimination and equality of educational opportunity (Hodgson 2012). As such, governments around the world, most often through their ministries or departments of education, invest significant amounts in education support services for children and adolescents with chronic health conditions. Delivering education support to children and adolescents with a chronic health condition is, therefore, considered an important step in terms of equity and in assisting school‐aged students with chronic health conditions to reach their academic potential and to become successful and engaged learners. However, there is very limited evidence on the effectiveness of educational support interventions in improving school engagement and educational outcomes for children and adolescents with chronic health conditions and a scarcity of research evidence outlining best practice models. Moreover, much of the evidence relates to a particular diagnostic illness category with few studies investigating the common impacts of chronic health conditions and effectiveness of education support interventions more generally. Such a non‐categorical approach is useful in public policy decision‐making in which interventions may be provided universally with the expectation that they will be tailored at the local level to suit specific needs or conditions.

Chronic health conditions in children and adolescents are generally managed throughout the healthcare system, including primary care (e.g. general practice), community‐based specialist services (e.g. community health centres, private paediatricians) and hospitals. Educational support programmes for children and adolescents with chronic health conditions may be provided within either the healthcare or education systems. As such, this review will investigate the effectiveness of educational interventions across the healthcare and education systems at a global scale.

Description of the intervention

This review will include educational support interventions delivered to children and adolescents with a chronic health condition who miss school due to illness, some of whom may or may not have been hospitalised due to their chronic illness. As such, educational support interventions may be provided in settings external to regular school environments (e.g. children's hospitals, community settings or in the home). We will include educational interventions that target one or more of the four sites of hospital, home, community setting or school in this review. This approach is consistent with Daraganova 2013, who stated that, "to improve school attendance, interventions should be implemented at different levels (i.e. individual, family and community) and targeted toward specific subgroups in the population" (p. 75). Educational support may be delivered by hospital‐based school teachers, community‐based school teachers or by teachers from a student's regular school. Educational support aims to assist children and adolescents, who are unable to attend their regular school because of illness, to meet their educational needs and goals despite absence from school, with efforts often focusing on facilitating a smooth re‐entry to school (Kaffenberger 2006; Madan‐Swain 2008). Education support may include one‐to‐one or group tuition and is often highly personalised.

How the intervention might work

Figure 1 provides a logic model depicting how we hypothesise education support interventions for children and adolescents might work. The logic model includes the inputs, modifiable factors that the interventions may target, and the logical/theorised intermediary and primary outcomes that are aimed to be affected by the intervention.

1.

Hypothesised logic model: describing how educational support interventions for children and adolescents with a chronic illness work.

Educational support interventions for children and adolescents with chronic health conditions may be delivered in the hospital, school, home or community setting, and may target the child, family, school or hospital staff (e.g. multidisciplinary teams). They may be provided by a child's parent(s) or carer(s), the child's regular school (sometimes referred to as the 'home school'), the regional/district school authority, the hospital (in the case of long periods of inpatient stays or frequent outpatient visits), private provider organisations or community‐based organisations. This approach is consistent with a socioecological model that acknowledges the complex interplay between the systems in which children and adolescents are immersed, and the influence of these systems on their development. This review will focus on education support interventions that at minimum have direct involvement with the child (i.e. the sphere of service delivery is at least at the level of the child). These interventions could take the form of one or more of the following formats in either one‐to‐one or group sessions: face‐to‐face interaction, online interactions, synchronised or asynchronised, or virtual classroom interactions. These features of the intervention are captured as inputs in the logic model, information about which we will gather in this review to help inform our investigation of the nature of educational support interventions.

Educational support interventions delivered to children and adolescents with a chronic health condition aim to target some of the known modifiable predictors of engagement and academic achievement. These modifiable factors are identified in the logic model as attitudes to school, school connectedness and anxiety, each of which will be described below in the context of how we propose educational support interventions might work.

Research has shown that students' attitudes to school, including motivation and approach to learning, are important predictors of school engagement, including 'dropout', and academic achievement (Froiland 2014; Hillman 2010; Li‐Grining 2010).

Educational support interventions for children and adolescents with chronic health conditions aim to build a sense of connectedness to school staff and peers. This is because "research has shown that students who feel more accepted, included and involved in their school are more likely to be engaged in classroom learning, in extracurricular activities, in interpersonal relationships, and in the wider school community" (Robinson 2014, p. 14). School connectedness refers to the quality and number of connections students have with 'place' (the school) and 'people' (teachers, other school staff and peers) (Bond 2007; Maslow 2012; Robinson 2014). Improving school connectedness is important as research has linked feelings of belonging and connectedness to a range of school outcomes including aspects of school engagement and achievement (see review by Osterman 2000). Maslow 2012 found that, for students with chronic health conditions, school connectedness was an important predictor of academic achievement (i.e. college graduation). Furthermore, social support (e.g. having close friends) has been identified as an important factor that assists young people to manage the effects of their chronic illness on school functioning (Lightfoot 1999; Shiu 2004). A student's connectedness to school and their peers has also been linked to later mental health and academic outcomes (Bond 2007; Pittman 2007).

Children and adolescents with certain chronic health conditions (e.g. chronic fatigue syndrome, epilepsy and asthma) are known to experience heightened levels of anxiety (Pinquart 2011). Many children and adolescents with a chronic health condition, their parents and their teachers are also concerned about the effects of having a chronic health condition on school work, on keeping connected to peers and peer relationships, and school attendance (Shiu 2004; Yates 2010). High levels of intense stress and anxiety, if not managed well, can affect functioning and impede learning, with the risk of negatively affecting school functioning and academic achievement. Educational support interventions may aim to alleviate some of the psychological stress and anxiety associated with the effects of the chronic health condition thereby reducing the 'impairment' of the condition and assist in building adaptive functioning (Power 2006). Furthermore, educational support delivered to children and adolescents with chronic health conditions aims to provide students with ongoing learning opportunities, despite not being able to attend their regular school because of illness. This continuity in learning promotes and supports students to keep up‐to‐date with their school work or learning goals so that academic achievement and progress is not negatively impacted due to school absenteeism. Reducing anxiety through receipt of educational support may, therefore, lead to improved mental health and better academic functioning given that mental health problems and school functioning are clearly related (DeSocio 2004). However, we also acknowledge that anxiety itself, when sufficiently persistent or severe, is a form of a mental health condition and research has indicated that anxiety disorders are related to lower levels of educational participation (DeSocio 2004; Woodward 2001).

Modifying attitudes to school, school connectedness and anxiety through educational support is, therefore, hypothesised to lead to improved mental health, better quality of life and may facilitate a smoother transition to school (i.e. adjusting to school life after having been absent from school due to a chronic health condition). We identify these as intermediary outcomes as they can of themselves have a direct relationship with school engagement and academic achievement.

Underpinning this logic model is the context in which the intervention is delivered that can influence not only the intervention itself, but also the modifiable factors, intermediary outcomes and primary outcomes. These contextual factors may include severity of illness and degree of cognitive impairment and physical disability associated with the chronic health condition, as well as whether the condition is a mental health or physical health condition. They may include potential features of the population such as age/grade level. We have also selected features from the PROGRESS (Place of residence, Race/ethnicity/culture/language, Occupation, Gender/sex, Religion, Education, Socioeconomic status, and Social capital; O'Neill 2014) framework, to collect information in order to, where possible, perform subgroup analysis including gender, place of residence, parental occupation, parental education and socioeconomic status.

Why it is important to do this review

The purpose of this review is to examine and describe the current state of the evidence about the effectiveness of education support services for children and adolescents with a chronic health condition. To date, there appears to be little research detailing the types and effectiveness of models of educational support services for children and adolescents with chronic health conditions. From scoping searches, the evidence appears limited to qualitative studies, expert opinions, case studies and literature reviews. The quality of this literature has not been reported. Furthermore, much of the evidence is limited to specific conditions. For example, Prevatt 2000 reviewed school reintegration programmes for children with cancer. One exception is a literature review conducted by Canter 2012, which explored the effectiveness of school reintegration interventions for children with chronic health conditions. Canter 2012 found that these interventions were more effective in increasing knowledge about the child's illness than changing attitudes about chronic health conditions. Moderate improvements in reports of self‐worth of the ill or injured child were also noted after interventions in four studies included in the Canter 2012 review.

The approach used in Canter 2012 differs from the current systematic review in a number of ways. Canter 2012 examined school re‐entry programmes for ill or injured children, whereas our review will not focus on injured children unless their injury is associated with, or results in, a chronic health condition. Canter 2012 examined interventions specific to an injured/ill child's return to school, whereas our review will adopt a broader examination of educational support interventions provided to children and adolescents with a chronic health condition while in hospital, at home or at school re‐entry. Finally, Canter 2012 examined school reintegration programmes and their effect on the outcomes of changing knowledge about, and attitudes towards, chronic illnesses primarily among the ill student's teachers and peers. Our review will examine the impact of educational support services on school engagement and academic attainment outcomes as experienced by students with chronic health conditions who have received educational support services. To our knowledge, there are no systematic reviews on this topic.

In conducting our review, we are motivated by a desire to build the knowledge base about effective models of education support for children and adolescents with a chronic health condition. Information derived from this review can inform current and future research, practice and policy decisions and is expected to be of interest to those who fund or deliver (or both) educational support programmes to children and adolescents with chronic health conditions. Findings from this review may inform future improved models of educational support interventions. Improving models of educational support not only has potential for enhancing students' educational trajectories, but also has clinical relevance, as it is well acknowledged that education influences health and well‐being (Cohen 2013). Given the interplay between education and health, it is imperative that education features in the holistic provision of care of a child or adolescent with a chronic health condition. This review is also expected to provide an initial examination of the evidence on this topic, which in addition to highlighting research gaps and future research opportunities, will also provide an opportunity to capture developments over time in future updates of the review.

Objectives

To describe the nature of educational support interventions for children and adolescents with a chronic health condition, and to examine the effectiveness of these educational support interventions on school engagement and academic achievement.

Methods

Criteria for considering studies for this review

Types of studies

We included randomised controlled trials (RCTs) in our review as they are well understood to be the ideal method for evaluating the effectiveness of healthcare interventions (National Forum on Early Childhood 2007; O'Connor 2011). Importantly, RCTs are considered less vulnerable to bias compared with other study designs (Lewis 2004); however, there are sometimes ethical and feasibility issues that limit the utility of RCTs (Bonnie 1998). It is unlikely that RCTs will be the sole research study design used to evaluate the effectiveness of educational support interventions for children and adolescents with chronic health conditions. As such, we considered controlled before‐and‐after studies for inclusion in this review. Controlled before‐and‐after studies incorporate a control group with similar characteristics to the intervention group; however, the group allocation is based on a non‐random method. These studies nonetheless need to have the intervention and control groups assessed before and after the intervention. Finally, our review included studies that may have used an interrupted time series (ITS) design. This study design involves measuring outcomes in people on multiple occasions before the intervention to identify underlying trends and on multiple occasions after the intervention (in total at least 7 occasions). The observations collected after the intervention provide information as to whether the observed trend noted post‐intervention is different to that of the underlying trend. ITS may or may not have a control group but the value of ITS analysis is that the subjects are collectively themselves the control group.

We expected to find other study designs in our search (e.g. observational studies and qualitative studies); however, due to the potential high risk of bias associated with these studies in relation to evidence of effectiveness (Ebrahim 2005), we did not include them in our review.

Nonetheless, we acknowledge that both RCTs and non‐randomised studies may be susceptible to bias, and as such, we examined and reported the risk of bias for all included studies. For studies involving a control group, we also accepted studies where group allocation was conducted at the cluster level.

We also aimed to include qualitative studies if they were conducted within the context of an included quantitative intervention study, particularly if the qualitative information was about the effectiveness of the intervention or factors influencing intervention effectiveness (e.g. enablers or inhibitors). We excluded standalone qualitative studies from our review.

Types of participants

Participants included children and adolescents aged 4 to 18 years who have a chronic illness or chronic health condition as defined in Description of the condition. We noted that in the United States of America (US) the term 'special healthcare needs' is often used either or instead of people with chronic health conditions. While not widely used outside of the US, we included studies with children and adolescents with special healthcare needs on the condition that the population in the study was described as having a 'chronic' health condition. We justified this as the definition of special healthcare needs is broader than that of chronic illness. Children with special healthcare needs are "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally" (McPherson 1998, p. 138). In this definition, the presence of a chronic health condition is considered together with the degree of support required to aid healthy functioning. As such, children and adolescents with a chronic health condition, disability, mental disorder (or a combination of these) could be captured under the broad umbrella term of special healthcare needs should they meet the service usage criteria of the special healthcare needs definition. In some circumstances, people may be captured under the definition of special healthcare needs when they have not yet experienced a chronic health condition, as the definition includes those who are at risk of developing a chronic illness due to biological and environmental risks. We did not include people at risk of developing a chronic health condition in our review.

We included studies with children and adolescents who have any chronic health condition regardless of severity according to the definition of a childhood chronic health condition by the Centers for Disease Control. It is understood that not all children and adolescents with a chronic health condition experience negative educational outcomes due to school absenteeism caused by their illness. However, children and adolescents with more severe chronic health conditions miss substantial amounts of school because of their illness (Moonie 2006; Newacheck 1992) and, for these pupils, school functioning may be impacted. Therefore, where possible, we aimed to collect information about severity of condition and number of days of school absenteeism so that we could perform a subgroup analysis to examine the potential impact of severity of disease on learning and developmental outcomes. We included studies of children and adolescents with a chronic health condition who have been hospitalised or who have had regular specialist medical intervention. We aimed to include studies of children and adolescents with a chronic health condition who were not necessarily hospitalised but who may be absent from school due to their illness. This is because there are certain conditions (e.g. chronic fatigue syndrome) that may not be severe enough to require hospitalisation or intense medical attention but have associated functional impairments that may lead to school absences and may place pupils at risk of school disengagement, poor quality of life and poor educational outcomes.

We did not place any restrictions on studies and participants in our review by gender, developed or developing country status, or socioeconomic status. We did not apply any study design filters in the search strategies.

During the review process, we came across some health conditions that were difficult to determine if they were indeed chronic illnesses or chronic health conditions and relevant for this review (e.g. traumatic brain injury and malaria). In such cases, we referred to the Word Health Organisation Pediatric International Classification of Disease (ICD‐10) and consulted with co‐authors.

Types of interventions

Interventions

This review examined education support interventions wherever they were delivered throughout the child's journey from hospital to home to school. Interventions may vary according to two constructs: where the intervention is delivered, and the principal provider or co‐ordinator of support. Generally, interventions are delivered in one or more of the following four sites: home, hospital, regular school or community, and may target the child, family, school, hospital, community or a combination of these. Similarly, interventions may be delivered or co‐ordinated principally by the parents/carers, hospital, regular school or by community‐based organisations. These are depicted in the logic model (see Figure 1).

We included multicomponent interventions only if they had a direct education intervention component for the child or adolescent. For example, we excluded a support intervention that makes changes to the physical environment of a school to better accommodate the needs of a child or adolescent with a chronic health condition, or that runs information sessions for parents/carers but does not include a direct education intervention component to the child or adolescent with a chronic health condition.

Where possible, interventions may have been compared with young people receiving no treatment (i.e. young people who have not received education support over and above that received by a child without a chronic illness). It may also have been possible that a new intervention was compared with an existing intervention; in which case, we sought advice from a statistician about how best to analyse data from such non‐inferiority and equivalence designed studies.

As noted in the Differences between protocol and review, we included studies if the intervention took place in the context of a Medical Home. In the USA, the language of 'Medical Home' was first described over 45 years ago as a way to maintain centralised medical records of children. Since then, and as defined by the American Academy of Pediatric’s position statement, it has evolved to be care that is accessible, continuous, comprehensive, patient‐and family‐centred, co‐ordinated, compassionate, community‐based and culturally effective (American Academy of Pediatrics Council 2005; Eichner 2012). Specifically, co‐ordinated means "co‐ordinated with educational and other community organizations to ensure that special health needs of the individual child are addressed" (American Academy of Pediatrics Council 2005, p. 1240). Co‐ordination is emphasised and justified in the Policy Statement as follows..."Because children spend a substantial amount of time in school and child care settings, the linkages between health care and educational and child care systems are especially important for many children and youth with special health care needs" (American Academy of Pediatrics Council 2005, p. 1239). Nonetheless, we aimed to only include such a study if there was specific mention of the Medical Home and co‐ordination with the child's school or educational system. However, and also importantly, no studies were found based on this and the other inclusion criteria.

Controls

Controls in each of the included four studies received standard or community care or were waiting‐listed for the intervention.

Types of outcome measures

This review included studies that reported on any of the primary outcomes (school engagement, academic achievement) or any of the secondary outcomes (quality of life, transition to school, mental health and/or adverse outcomes). We considered short‐term and chronic outcomes for inclusion in the review (i.e. we did not place a restriction based on timing of outcomes).

Primary outcomes

• School engagement.

• Academic achievement.

These are listed as primary outcomes in the logic model (Figure 1).

School engagement

School engagement can be defined as "the extent to which students identify with and value schooling outcomes, and participate in academic and non‐academic school activities" (Willms 2003, p. 8). School engagement is multi‐faceted involving behavioural engagement, emotional engagement and cognitive engagement (Fredricks 2004). Behavioural engagement relates to participation (e.g. school attendance, school dropout) and is typically measured via teacher ratings and student self‐report (Fredricks 2004). Emotional engagement encapsulates a student's affective reaction to school and represents the bonds and ties one has to school ‐ including peers. Self‐report is commonly used to measure emotional engagement (Fredricks 2004). Cognitive engagement includes the investment one places in learning and also includes "perceptions and beliefs related to self, school, teachers, and other students" (Jimerson 2003, p. 7). Cognitive engagement is often measured via observational techniques or self‐report (or both) (Fredricks 2004). We included studies with outcomes that fitted with all or part of this definition of school engagement in this review.

The reasons to include school engagement as a primary outcome of this review are two‐fold. First, research suggests that young people with chronic health conditions are at risk of school disengagement and poor academic achievement (Cadman 1987; Forrest 2011). Second, school engagement plays an important role in influencing educational outcomes including academic achievement and persistence at school (Fredricks 2004), and further protects against school dropout (Fredricks 2004). School engagement has also been associated with positive adult educational and occupational outcomes including post‐compulsory school education qualifications, as well as occupation status in adulthood (Abbott‐Chapman 2013).

Academic achievement

There is a noted association between academic achievement and poor school functioning in children and adolescents with chronic health conditions (Taras 2005). Academic achievement is usually measured in the form of students' school test grades/scores, year level progression/repetition, high school graduation/completion or highest level of education attained by students. Academic achievement has also been used to refer to academic achievement, educational behaviours and cognitive skills .

Academic achievement is considered an important outcome for this study given that higher academic attainment has been associated with better health outcomes and healthy lifestyles (Feinstein 2008). Furthermore, research has shown that "when poor achievement is coupled with poor engagement (measured by truancy from school) the risk of ill health in adulthood multiplies by 4.5" (Feinstein 2008, p. 12). Therefore, improving the academic achievement and school engagement of students with a chronic health condition may have a carryover effect of improving health. In addition, higher educational attainment in adolescence is associated with higher levels of educational attainment and higher occupation status in adulthood (Abbott‐Chapman 2013), which illustrates the chronic impact of school achievement on subsequent educational and occupational attainment in later life.

Secondary outcomes

• Transition to school/school re‐entry.

• Mental health.

• Quality of life.

• Adverse outcomes.

Transition to school/school re‐entry

Some school students miss substantial amounts of school due to a chronic health condition. When children and adolescents are absent from school for long periods, the transition back to school can be difficult (Kaffenberger 2006). Educational support interventions delivered to children and adolescents who have been hospitalised because of a chronic health condition therefore "enhances the student's learning potential while ill, and facilitates a smoother return to school" (Ratnapalan 2009, p. 433). It has been said that "model school re‐entry programs target school attendance as a primary goal to reintegrate the child into the academic programming and to symbolize a return to normalcy" (Shaw 2008, p. 76).

Therefore, we included school re‐entry, which involves a student's return to school following school absence or hospitalisation due to a chronic health condition, as a secondary outcome of educational support services for children and adolescents with a chronic health condition. We examined the success by which school children and adolescents with chronic health conditions transition from home or hospital to school by assessing information relating to school attendance and school absenteeism when returning to school. We also examined other indicators of students' adjustment to school (e.g. relationships with peers) following the transition back to school after being absent from school or hospitalised.

Mental health

The WHO describes mental health as "a state of well‐being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community" (WHO 2014).

In our logic model (see Figure 1), we have included mental health as an important intermediary outcome for our review. This is because chronic illness experienced by children and adolescents is associated with greater psychological stress and reduced sense of well‐being for the child, their siblings and parents/carers (Stuber 1996). Quach 2014 found that children with a chronic illness experienced poorer psychosocial functioning compared with children without a chronic health condition. In one meta‐analysis of 87 studies, children and adolescents with chronic physical disorders were also found to report higher rates of psychological adjustment problems including internalising and externalising problems as compared with controls (Lavigne 1992). These studies suggest that having a chronic health condition can negatively impact mental health. In addition, mental health issues can inhibit academic attainment (Fletcher 2008), and school problems and emotional distress can be experienced concurrently for some students (Roeser 1998). Therefore, educational support provided to children and adolescents with a chronic health condition has the potential to alleviate some of the stress and anxiety associated with chronic illness, and in doing so improve their mental health status. Improvements to mental health may in turn enhance learning, school engagement and educational attainment in the longer term.

We intended on capturing the mental health outcomes as they relate to the emotional well‐being of children and adolescents with chronic health conditions (e.g. depression, anxiety, self‐esteem). Self‐esteem, in particular, is related to mental health, especially to depressive mood among adolescents (Bolognini 1996). Further, self‐esteem enhancement programmes have been shown to be effective at improving academic achievement among children and adolescents (Haney 1998). Valid and reliable mental health measures used with children or adolescents include, but are not limited to, Kessler Psychological Distress Scale, Mental Health Inventory, Strengths and Difficulties Questionnaire, Beck Depression Inventory, Depression Anxiety Stress Scale and Child Behaviour Checklist.

Quality of life

Quality of life has been defined by the WHO as an "individual's perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment" (WHO 1997, p. 1).

It is often reported that people with a chronic health condition may experience impaired quality of life. This is evidenced by research that shows that children and adolescents with certain chronic health conditions (e.g. diabetes, asthma, cerebral palsy) report poorer health‐related quality of life than their healthy peers (Varni 2007). Children with chronic health conditions also tend to report lower school functioning (an indicator of health‐related quality of life) compared with healthy peers (Varni 2007). It is for these reasons that we included quality of life as a secondary outcome in this systematic review.

Quality of life is a multi‐dimensional construct including aspects relating to physical health, psychosocial health, emotional functioning, social functioning and school functioning. As such, for studies that meet the inclusion criteria and include quality of life as an outcome measure, we examined and reported on the indicators that the study used to measure this construct. Some existing quality of life measures that we may expect to encounter in studies include the EQ‐5D‐Y (Kreimeier 2019) , Health Utilities Index (HUI II/III), Australian Quality of Life Instrument (AQoL), 16‐D, 17‐D, Quality of Wellbeing scale, Child Health Utility 9D (CHU 9D) and the PedsQL^TM  ‐ a measurement model for the paediatric quality of life inventory (Varni 1999) .
 

Adverse outcomes

We intended to report on any adverse outcomes (or harms) of the intervention. For instance, while poor school engagement may be associated with increased stress and anxiety, the reverse may also be true, namely, that chronically ill children and adolescents who receive educational support may experience poorer mental health (e.g. increased anxiety and reduced coping) due to the expectation of participation in educational support programmes.

Search methods for identification of studies

This review covered topics relating to education, psychology, and health, which necessitated a thorough multi‐disciplinary search. Two review authors (MT and TB) conducted the searches with guidance from the librarian from the Royal Children's Hospital (Melbourne). Searches were included up to the end of 2020.

Electronic searches

We searched the following electronic databases between January 18 and 25, 2021 for the period up to 31 December 2020.

• Cochrane Central Register of Controlled Trials (CENTRAL) (Including Public Health Group).

• MEDLINE (Ovid).

• Embase (Ovid).

• PsycINFO (Ovid).

• CINAHL (EBSCO).

• ERIC (Education Resources Information Center) (EBSCO).

• Applied Social Sciences Index and Abstracts: ASSIA (ProQuest).

• PubMed (from 2018).

We developed a preliminary search strategy in MEDLINE in consultation with a librarian at the Royal Children’s Hospital (Melbourne, Australia) and the Cochrane Public Health Group Information Specialist. The search strategy involved using Boolean operators to combine search terms (both text words and controlled vocabulary) relating to the population (i.e. hospitalised children/adolescents or children/adolescents with a chronic illness) and the intervention (i.e. educational support). As part of our search of the population, we also included specific chronic illness disease search terms based on their relative prevalence and known impact of causing significant absence from schooling and education (e.g. cancer, cystic fibrosis, eating disorders and scoliosis).

While our population of interest was children and adolescents with chronic health conditions, we decided to also include hospitalised children/adolescents in the electronic search strategy and manually reviewed titles and abstracts for the selection of studies that were based on children/adolescents with a chronic health condition. We chose to do so as there is little consistency in the use of either the term or definition of chronic illness or chronic health conditions. For example, as some chronic health conditions (but not all) are also associated with a disability or mental illness, published potentially relevant studies that refer to disability or mental health problems would be missed if we were to use solely chronic illness search terms in our electronic search strategy. This is also true for studies on chronic illness that are classified as special healthcare needs or described by a specific illness type. Thus, we believed our approach would better capture potentially relevant studies on chronic health conditions regardless of whether they were described in terms of disability, mental illness or special healthcare needs. Furthermore, we included in our electronic search the link to hospital as a proxy for severity of chronic illness.

In addition, we did not apply any study design filters in the search strategies other than a date limit (from 2019) to the PubMed search. The reason for this was to identify records that were available in PubMed, up to two years prior to the searches end period date (i.e. 31 December 2020), but were not available in Ovid Medline.

The full search strategies and terms can be found at Appendix 1.

Searching other resources

We handsearched the top five journals in the field for the 12 months prior to our electronic search date on February 8 and 9, 2021. These included the journals: Pediatrics, JAMA Pediatrics, Journal of School Health, Journal of Educational Psychology and the Journal of Pediatric Psychology. We also searched the bibliographies of included studies. We searched the following five grey literature registries and databases between February 8 and 12, 2021 to identify additional published and unpublished studies theses and conference abstracts. These included:

• ClinicalTrials.gov (clinicaltrials.gov/);

• WHO International Clinical Trials Registry platform (apps.who.int/trialsearch/);

• Australian New Zealand Clinical Trials Registry (www.anzctr.org.au/);

• OpenGrey (www.greynet.org/opengreyrepository.html);

• ProQuest Dissertation and Theses database.

We also contacted organisations and individual experts in the field via email and requested that they identify potentially relevant studies that may have been published or studies that may be ongoing.

Data collection and analysis

Selection of studies

We imported search results (including author information, year of publication and titles and abstracts) into the reference management software Endnote X7. We removed duplicate records from Endnote. Two reviewers (TB plus one of either MT, SR or one of three research assistants) (see Acknowledgments) independently screened the remaining citations and assessed them for inclusion. An Excel workbook containing a checklist of the inclusion criteria was used to assess the eligibility of each study for inclusion in this review.

To be considered for inclusion in the review, the study must have met the following criteria:

• participants: must include children or adolescents (aged four to 18 years) with a chronic health condition. We also included studies involving children or adolescents with special healthcare needs providing the study reported findings with a reference to chronic illness;

• intervention: must include educational support;

• outcomes: must report the primary outcomes (e.g. school engagement or academic achievement) or secondary outcomes (e.g. quality of life, transition to school/school re‐entry, mental health or adverse outcomes);

• type of study: must be an RCT, controlled before‐and‐after study or ITS.

We retrieved the full texts of potentially relevant studies identified through the screening process and studies where eligibility was unclear. Two review authors: TB and one of either MT or SR, or one of three research assistants (see Acknowledgements) independently reviewed each study and recorded details about final inclusion/exclusion decisions, including reasons supporting each decision in the ’Characteristics of included studies’ table. We have detailed information about a randomly selected sample (n = 35) of excluded studies in the ’Characteristics of excluded studies’ table.

Where there was a discrepancy between the two reviewers about a decision to include/exclude a particular study, the two reviewers discussed the matter to try to resolve the disagreement. In the event that consensus was not achieved, a third review author (MK) arbitrated. We did not at this stage contact study authors to request further information because we did not need further information about the study to clarify decisions in this process.

Data extraction and management

We retrieved the full texts of studies that met the inclusion criteria. Two reviewers (TB and one of either MK or FDLMG (see Acknowledgements)) independently extracted study characteristic data, risk of bias data and outcome data from the full texts of included studies using a data extraction form, before entering the information into Review Manager 5 (RevMan 2012). We developed the data extraction and risk of bias forms based on the Cochrane Public Health Group Methods Manual (Cochrane Public Health Group 2011), and we included a risk of bias assessment. We piloted the data extraction form to assess the consistency of the data extracted by two review authors. In the data extraction form we collected information about study context, including information about the study methods, participants, details of the intervention, outcomes explored, and analyses used. We also included information about study outcomes and potential moderators/confounders (e.g. Illness type, child age) of the study outcomes in the data extraction form. We recorded information about outcomes in the ’Characteristics of included studies’ table and the ’Table 1. Where available, we extracted the key characteristics of included studies including:

• descriptive information:

  • author;

  • year of publication;

  • year of study.

• study methods:

  • research question(s);

  • research aim(s);

  • study design (including information about the timing of assessments);

  • consent rate.

• participants:

  • demographics, using the PROGRESS checklist;

  • age/year level;

  • chronic illness type;

  • severity of chronic illness;

  • physical disability or cognitive disability, or both;

  • mental health condition or physical health condition, or both;

  • number of school days missed because of chronic illness.

• location:

  • country.

• details/nature of the intervention:

  • name of the intervention;

  • description of the intervention, including who delivered the intervention, what was delivered, where it was delivered and to whom it was delivered, as well as information pertaining to the multicomponent nature of the intervention;

  • theoretical foundation of the intervention;

  • setting (site of delivery) of the intervention (e.g. home, hospital, regular school or community‐based);

  • principal provider or co‐ordinator of the intervention (e.g. home, hospital, regular school or community‐based);

  • target of the intervention (e.g. child, family, school, hospital, community);

  • staffing (e.g. roles and numbers);

  • pedagogy (e.g. personalised, individual or group);

  • technology;

  • duration and intensity of the intervention;

  • format of the intervention;

  • cost of the intervention;

  • details of control and comparison groups;

  • retention rates.

• outcomes:

  • primary outcomes (e.g. school engagement, academic achievement) and measures used to assess outcome;

  • secondary outcomes (e.g. quality of life, transition to school/school re‐entry, mental health, adverse outcomes) and measures used to assess outcome;

  • potential confounders/moderators (e.g. health/well‐being, illness severity, chronic illness type).

• analysis:

  • how the data were analysed.

• other:

  • risk of bias information;

  • source(s) of research funding;

  • potential conflicts of interest;

  • implications for replication;

  • qualitative information on effectiveness.

Where disagreements in data extraction arose between review authors, the two review authors involved discussed the discrepancy with reference to the original full‐text paper to try to reach consensus. When required, we conferred with a third review author (MK). We contacted authors of included studies if additional information was required (e.g. if data were missing or if raw data were required) but no further information was provided. We did not find multiple publications reporting on the same included study.

Assessment of risk of bias in included studies

We assessed the risk of bias of the included studies using version 1 of the Cochrane risk of bias tool for randomised trials (Higgins 2011). This tool assesses selection bias (i.e. random sequence generation and allocation concealment), performance bias (i.e. blinding of participants and personnel), detection bias (i.e. blinding of outcome assessment), attrition bias (i.e. incomplete outcome data), reporting bias (i.e. selective reporting), and other sources of bias. There were no controlled before‐and‐after studies that were included, but we are aware that for these studies the recommended tool is the Risk Of Bias In Non‐randomized Studies of Interventions (ROBINS‐I) as described in Chapter 25 of the Cochrane Handbook for Systematic Reviews of Interventions version 6.3 (Sterne 2022). Similarly, there were no ITS included studies so we did not need to assess risk of bias in ITS studies using the Effective Practice and the Organisation of Care Risk of bias tool for ITS study designs. We included additional criteria for cluster‐RCTs including 'recruitment to cluster', 'baseline imbalance', 'loss of clusters', 'incorrect analysis', 'contamination' and 'compatibility with individual RCTs'.

Measures of treatment effect

We prioritised the differences between intervention and control group follow‐up scores. However, due to poor reporting, this was not always possible and we were often required to use the estimate of treatment effect that was available and outlined in the original paper. Where available, we reported standard deviations and 95% confidence intervals. It was likely that studies would use different scales to measure the continuous outcomes explored in this review. In this circumstance, we aimed where possible to report standardised mean differences (SMD) with 95% confidence intervals.

No included studies reported ordinal, dichotomous or qualitative data, but the methods proposed to handle ordinal data can be found in the protocol (Tollit 2015).

Unit of analysis issues

It is possible that for cluster‐RCTs and cluster‐non‐RCTs, authors may have undertaken analysis at the individual level while not accounting for the effects of group clustering. As there was one included study that was a cluster‐RCT that met the inclusion criteria for this review and the analyses included adjustment for clustering appropriately using hierarchical linear models to compare outcomes, there was no need to adjust for clustering as described in the protocol (Tollit 2015). We made no adjustments or separate analysis for trials with multiple treatment groups, multicomponent interventions or non‐inferiority studies as published in the protocol (Tollit 2015) as these were not relevant to any of the included studies. The full protocol wording for this section can be found in Tollit 2015.

Dealing with missing data

Missing data can be related to publication bias and reporting bias. We extracted and reported missing data and retention data using the procedures described in Data extraction and management. We reported information about biases in the Risk of bias section in the ’Characteristics of included studies’ table. In addition, where possible and appropriate, we employed the following strategies to deal with different types of missing data in our review as published in the protocol (Tollit 2015).

• Where there was missing information on methods of the included studies, we contacted authors of trials to obtain information on the methods used or to clarify the methods when this was unclear in the paper. We contacted authors by email in the first instance, using contact details provided in the publication.

• We contacted authors of original papers to obtain missing data required for the analysis, including missing outcome data. We also contacted study authors to ascertain the reasons for these missing data.

• Whenever possible, we conducted our analyses using an intention‐to‐treat methodology, which involves using all participants who were initially randomised in the trial in the analyses. In the analyses, the group treatment that participants were initially allocated to (e.g. intervention group versus control group) were analysed accordingly, regardless of the subsequent treatment received or irrespective of whether participants were lost at follow‐up.

• Where summary data were missing and where possible, we calculated these data using existing information as provided in the paper (e.g. using confidence intervals, standard errors, t values, P values, F values). Where we could not calculate standard deviations and standard deviations of the change due to missing data of supplementary statistics, we were not able to impute the standard deviations and standard deviations of change statistics from other existing studies in this review due to a lack of information, or from studies from a different review as this is the first review on this topic.

Assessment of heterogeneity

As meta‐analysis was not possible due to the small number of studies for each outcome, we were unable to assess for statistical heterogeneity as outlined in the original protocol (Tollit 2015). Instead, we examined study heterogeneity by comparing the study characteristics of trials that met the inclusion criteria. Included in our assessment was an examination of similarities and differences in study design (methodological heterogeneity), and participants, interventions and outcome measures across the studies (clinical heterogeneity). In lieu of pooling studies in a meta‐analysis, we presented information for each individual study in the Characteristics of included studies table and provided an overview of the results based on the direction of effects as per McKenzie 2021; we interpreted the results with caution (see Table 2).

1. Certainty of evidence.

Certainty assessment

№ of patients

Effect

Certainty

Importance

№ of studies

Study design

Risk of bias

Inconsistency

Indirectness

Imprecision

Other considerations

Education support

Standard/community care or waiting list

Relative (95% CI)

Absolute (95% CI)

School engagement (follow‐up: range 6 months to 30 months)

4

randomised trials

seriousa

not serious

seriousb

seriousc

none

157

112

‐

not estimable

⨁◯◯◯ Very low

CRITICAL

Academic achievement (follow‐up: range 6 months to 30 months)

3

randomised trials

seriousa

seriousd

not serious

seriousc

none

134

93

‐

not estimable

⨁◯◯◯ Very low

IMPORTANT

Transition back to school (follow‐up: mean 9 months)

1

randomised trials

seriousa

not serious

not serious

very seriousc*

none

15

15

‐

not estimable

⨁◯◯◯ Very low

IMPORTANT

Mental health (follow‐up: range 6 months to 9 months)

2

randomised trials

seriousa

not serious

not serious

seriousc

none

103

60

‐

not estimable

⨁⨁◯◯ Low

IMPORTANT

Quality of life ‐ not measured or reported

‐

‐

‐

‐

‐

‐

‐

‐

Adverse effects ‐ not reported or reported

‐

‐

‐

‐

‐

‐

‐

‐

‐

‐

‐

‐

CI: confidence interval

a. The proportion of information from results at high risk of bias is sufficient to affect the interpretation of results: all studies had at least one domain at high risk of bias.

b. Indirectness from addressing a restricted version of the main review question in terms of the varied types of interventions and outcomes used

c. All studies had small sample sizes. c* Downgraded an additional level (to very serious): imprecision due to a reliance on a single confidence interval that indicates the possibility of a very small or no effect

d. Contradictory results from studies: half of the studies showed a positive direction of effect and half showed a negative direction of effect.

Assessment of reporting biases

We extracted information on potential reporting biases as described in 'Data extraction and management'. Likely types of reporting biases on this topic are: publication bias, outcome reporting bias (selective reporting bias), citation bias and time lag bias. As we could only include a small number of studies (10 or fewer) in the review, we described reporting biases in the Risk of bias tables.

As the number of studies in this review did not exceed 10, we did not produce a funnel plot. Original protocol wording for this section, however, can be found in Tollit 2015

Data synthesis

Synthesis by meta‐analysis as described in the protocol (see Tollit 2015) was not able to be performed in this review due to the small number of studies for each outcome, which would preclude an accurate estimation of between study variability for random effects meta‐analysis. Instead, we synthesised the data grouped by outcome measure using a vote counting method in accordance with Chapter 12 of the Cochrane Handbook for Systematic Reviews of Interventions (version 6.2), 'Statistical synthesis when meta‐analysis of effect estimates is not possible' (McKenzie 2021), and presented the findings in a Direction of effects table. Vote counting can be used to synthesise results based on a reported direction of effect, and/or where there is inconsistency in the effect measures or data reported across studies. Wherever possible, the effect estimate comparing intervention and control groups was calculated and reported as Standard Mean Difference (SMD) together with Confidence Intervals (CIs) and P values, where available. We have used a standard metric of 1 for a result that favours the intervention, and 0 for a result that favours the control group.

The vote counting method requires that, in order to assess the effect of interventions on one of our outcomes, each study must contribute one result to the vote counting method. In some studies, study authors did not report an overall outcome measure but instead reported the results of multiple subscales of the outcome measure. In these instances, it was therefore necessary to select one subscale result for inclusion in the synthesis. We did this by developing a post hoc Decision Rule (DR) informed by the best available evidence as to the clinical importance of each item on children's learning outcomes. The following Decision Rule was developed.

Decision Rule: Overall measure statistic (behaviours > social skills/competence) > Subscale measure statistic: Working memory (verbal) > Working memory (visual) > Attention > Reading > Applied mathematics > Spelling > Calculation.

The DR therefore applied specifically to the two primary outcomes school engagement and academic achievement as follows. For the outcome school engagement, the following hierarchy was used to select one measure for inclusion in the synthesis: overall measure > working memory (verbal) > working memory (visual) > attention. For the outcome academic achievement, the following hierarchy was used: overall measure > reading > applied mathematics > spelling > calculation.

The original protocol wording for this section can be found in Tollit 2015.

Subgroup analysis and investigation of heterogeneity

Subgroup analysis and quantitative examination of heterogeneity, as described in the protocol (see Tollit 2015), was not able to be performed because of the small number of included studies.

Sensitivity analysis

Sensitivity analysis, as described in the protocol (see Tollit 2015), was not able to be performed because of the small number of included studies.

Summary of findings and assessment of the certainty of the evidence

We assessed the overall certainty of the evidence grouped by outcome measure using the GRADE approach and the GRADEpro software. Two people (TB and FDLMG) independently conducted the assessments and, where there were inconsistencies, they were resolved through discussion. We rated the certainty of evidence as high, moderate, low or very low. As all studies were RCTs, we started with high‐certainty of evidence and the following factors were considered for downgrading the certainty: overall risk of bias, consistency of effect, imprecision, indirectness and publication bias, based on the guidance of the Cochrane Handbook of Sytematic Reviews of Interventions chapter 14 (Schünemann 2011).

We prepared the Table 1 based on the Cochrane Effective Practice and Organisation of Care (EPOC) worksheet for preparing a Summary of Findings (SoF) table using GRADE (Cochrane 2017). We used the template provided for the SoF table in RevMan 5.4.1. The table includes summary information about both the primary and secondary outcomes of this review: (primary) school engagement and academic achievement; (secondary) transition back to school, mental health and quality of life in addition to any adverse effects as an outcome. As we determined there were insufficient data that could be appropriately pooled, we used the 'Summary of findings' table format for narrative synthesis.

Results

Description of studies

See: Characteristics of included studies; Characteristics of excluded studies.

Results of the search

The searches of the eight data bases identified 14,202 articles. After 3,393 duplicates were removed 10,809 titles and abstracts were double‐screened by two people independently. Grey literature, hand and reference list searches did not identify any additional studies that met the inclusion criteria. Screening identified 112 articles that needed to be read in full to obtain more information. Full‐text review identified four studies that were eligible to be included in the review (Butler 2008; Evans 2007; Moore 2012; Varni 1993). Reasons for exclusion of 108 studies are summarised in the study flow diagram Figure 2 and specific details of a random sample of these excluded studies (n = 35) can be found in Characteristics of excluded studies.

2.

Study flow diagram

Included studies

The following information is also presented in tabulated versions (see Characteristics of included studies and Table 3).

2. Summary: Characteristics of included studies.

Study	Chronic condition	Intervention type	Setting1	Sample size	Age (Mean years)	Follow‐up (months)	Attrition
Butler 2008	Cancer	Cognitive remediation	Paediatric clinic for children with cancer	163	11	6	27%
Moore 2012	Cancer	Cognitive remediation	Paediatric clinic for children with cancer	57	6.6	12	40%
Varni 1993	Cancer	School reintegration plus social skills training	Paediatric clinic for children with cancer	30	8.2	9	16%
Evans 2007	ADHD	Education consultation and support	School‐based	79	11.9	30	33%

ADHD: Attention deficit hyperactivity disorder

1. All studies conducted in the United States of America. All studies were randomised controlled studies.

Study participants

All participants involved in the four included studies, were from the United States of America, and were randomised to either intervention or control groups. The smallest study (Moore 2012) randomised 57 children (M = 6.6 years old, SD = 1.8) with leukaemia, and the largest study (Butler 2008) randomised 163 survivors of various malignancies (M = 11.0 years old, SD = 3.3). Controls in each of these four studies received standard or community care or were waiting‐listed for the intervention. The Varni 1993 study population also included children with cancer (M = 8.2 years old, SD = 2.4). The only study that included children with a chronic illness other than cancer was that by Evans 2007 which focused on children (M = 11.9 years old, SD = 0.7) with attention deficit hyperactivity disorder. One study (Varni 1993) reported a power calculation to determine sample size, and the authors reported not meeting that sample size. Butler 2008 stated that their sample size was projected from power analyses, but no calculation was reported. The total number of eligible participants was included in two studies. Butler 2008 reported that the total number of participants eligible for inclusion in their study was 173. They reported that 10 declined further participation prior to randomisation, resulting in 163 being randomised. Varni 1993 reported 77 eligible participants of whom 64 were randomised. The reasons for dropouts prior to randomisation were reported as: scheduling difficulties, parents who changed their mind about participation, a child being unable to comprehend the assessment procedure, and death of a child. The two other studies (Evans 2007; Moore 2012) only reported the number of children randomised. Data for study participants who completed the relevant studies was reported in all four studies with three studies providing reasons for non‐completion. Butler 2008 reported a completion rate of 73% with reasons for non‐completion being: refused testing, unable to be contacted for testing, missing documentation, unknown reason and a medical crisis. Varni 1993 reported a completion rate of 84% and reported two reasons for non‐completion: illness complications and study funding concluded prior to the due time of follow‐up assessment. Moore 2012 reported a completion rate of 60% and gave the following reasons for non‐completion: elective withdrawal, disease (cancer) relapse, family relocation and study funding concluded prior to the child's completion of chemotherapy. Evans 2007 reported completion rates for both the intervention and control groups of 69% and 65% respectively, but did not give reasons for non‐completion. Severity of chronic illness ranged from mild to severe. For example, in the study by Moore 2012, treatment for childhood leukaemia involved either a short high‐dose intravenous methotrexate infusion (HD IV‐MTX) or a long HD IV‐MTX infusion in the consolidation phase of treatment. Two of the studies that included children with cancer (Butler 2008; Moore 2012) reported both inclusion and exclusion criteria, while the third study that included childhood cancer participants (Varni 1993) reported inclusion criteria but no exclusion criteria. The study by Evans 2007 that included children with ADHD also only reported inclusion criteria.

Interventions used

The types of interventions included cognitive remediation programmes to improve learning for children with cancer (Butler 2008; Moore 2012), a school reintegration programme with social skills training for children with cancer (Varni 1993), and a school‐based consultation programme called The Challenging Horizons Program for children with ADHD (Evans 2007). Of the two cognitive remediation programmes, the mathematics programme (Moore 2012) involved 1‐2 hour/week sessions for one year. Developed by Moore and based on Multiple Representation Theory, it used a multi‐modality approach (such as pictures, abstract symbolism, mathematical language, contexts and concrete manipulatives) to learning mathematics. The cognitive remediation programme in the study by Butler 2008 (developed by the author) derived from three approaches: brain injury rehabilitation, educational psychology and child clinical psychology, and involved 2‐hour weekly sessions for a period of four to five months.

A different type of intervention that was also used with children with cancer was the school reintegration plus social skills training programme both developed and studied by Varni 1993. The programme commenced prior to the child’s return to school in a cancer clinic/hospital, and concluded six weeks after their return to school. It involved a minimum of two hours of an individual (child) programme that focused on a successful return to school, plus five x 1‐hour sessions focused on the development of social skills. The programme also included meetings with parents, medical staff, school teachers and peers.

The Challenging Horizons Program used in the study by Evans 2007 also included a focus on social skills. The other main focus of the programme was on academic skills such as assignment tracking, note taking and organisation. The programme was developed by the study author and involved linking the child with ADHD in the school with a mentor educator, e.g. a teacher or counsellor. Mentor educators delivered 15 intervention sessions that were described in an 80‐page treatment manual and interactive CD‐ROM. Social skills interventions, however, were delivered by school counsellors in small group weekly sessions. Mentor educators were supported by a certified school psychologist for an average of eight hours per week throughout each school year. The programme ran for three years.

Controls

Controls in the study by Butler 2008 were waiting‐listed for six months to then receive the Cognitive Remediation Programme (CRP) intervention. This was after the intervention group had completed the CRP and had completed the post‐intervention assessment.

Controls in two studies were assigned to standard care. In the study by Moore 2012, standard care was only described as those who did not receive the mathematics intervention. In the study by Varni 1993, which focused on a rapid return to school, controls received the routine/standard school reintegration service. This was described as consisting of the following components: (a) early preventive education and support for patients, parents, medical and school staff about the importance of early return and how this could be accomplished, (b) school conferences and classroom presentations to demystify the cancer experience for classmates and teachers, and (c) regular follow‐up with all concerned to ensure that progress was maintained.

In the study by Evans 2007, controls were assigned to community care. This was described as control participants being provided with a list of local providers of ADHD treatment services and summaries of their eligibility assessment for the study, and told they were free to pursue treatments of their choice in their communities and schools.

Outcomes

School engagement

No study reported on a validated or specific measure of school engagement. As such, we reported on the study reported outcomes of working memory, attention, processing speed, behaviour and social skills as they relate to the cognitive, behavioural and emotional aspects of school engagement (further explanation is given in Effects of interventions).

Working memory was measured but again in different ways. Moore 2012 used the Sentence and Bead Memory subtests from the Stanford–Binet 4th edition (Thorndike 1986). Butler 2008 again created an index for working memory made up of the Digits Backward (WISC–III; Wechsler 1991), Stroop Color–Word Test (Trial 3; Golden 1978) and the Trail Making Test B (Reitan 1969). Attention (Butler 2008) and processing speed (Moore 2012) were also measured. Butler 2008 created an index for measuring attention made up of the Digit Span (WISC‐III; Wechsler 1991), Sentence Memory (Wide Range Achievement Test of Memory and Learning [WRAML]; Sheslow 1990), Stories (Children's Memory Scale; Cohen 1997) and the Rey Auditory Verbal Learning Test (Trial 1 [RAVLT]; Rey 1964). Processing speed was assessed by Moore 2012 using the Processing Speed index from the Wechsler Intelligence Scale for Children (Wechsler 1991).

The child's behaviour was measured in two studies. Evans 2007 measured behaviour with two validated measures (Behavior Assessment System for Children, Reynolds 1993; Disruptive Behaviour Disorders Rating Scale, Pelham 1992) but only used the ADHD portions of the measures for the analysis. Varni 1993 used a more general and widely used measure (Child Behavior Checklist ‐ Parent Report Form, CBCL; Achenbach 1991). Social skills/competence was also measured in these two studies. Evans 2007 used the Social Skills Rating System (Gresham 1990) while Varni 1993 used the social competence subscale from the CBCL.

Academic achievement

Academic achievement was measured in three studies although measured in different ways. Moore 2012 used the Woodcock–Johnson Tests of Achievement—Revised; (Woodcock 1989) (four subscales: reading, spelling, calculations and applied mathematics). Butler 2008 used an index for measuring academic achievement that included the Woodcock‐Johnson Tests and two other validated scales: the Wide Range Achievement Test—Third Edition (WRAT–3; Wilkinson 1993) and the Reading Comprehension (Peabody Individual Achievement Test—Revised; Dunn 1970). Evans 2007 measured academic achievement as a component of their derived measure of "school functioning". The derived index included teacher and parent ratings of academic achievement, grade point average and teacher reports of classroom disruptive behaviour.

Transition to school/school re‐entry

One study measured transition back to school (Varni 1993) based on a  reported "school subscale", but the authors did not provide information on what or how the subscale was derived.

Mental health

Mental Health outcomes were measured in two studies, but they only looked at one specific domain of mental health which was self‐esteem. Butler 2008 used the Culture‐Free Self‐Esteem Inventory, 2nd ed (Battle 1992). Varni 1993 used the Self‐Perception Profile for Children (Harter 1985).

Quality of life

None of the studies measured or reported quality of life.

Adverse effects

None of the studies measured or reported adverse effects.

Excluded studies

A summary of the reasons for excluding 108 studies based on full‐text review is provided in Figure 2 and specific details of a random sample of these excluded studies (n = 35) can be found in Characteristics of excluded studies. Among the 108 full‐text reviewed and subsequently excluded studies, the majority (n = 73) were excluded because the study did not report the results of a trial. That is, they did not meet the inclusion criteria of being a controlled study or interrupted time series study. Several other studies with relevant populations, outcomes and study designs were excluded because the education support intervention was about knowledge of and or (self)‐management of the child's health condition rather than about interventions that aimed to enhance educational engagement or academic outcomes. Other studies were excluded because of an inappropriate comparator. For example, the study by Katz 1988 met the PICO criteria but included a non‐randomised historical control group that matched the baseline medical and demographic statistics of the intervention group and was, therefore, excluded as a controlled before‐and‐after study. As mentioned in the Methods section, a controlled before‐and‐after study is one in which the intervention and control groups are assessed before and after the intervention .

Risk of bias in included studies

We assessed the risk of bias of included studies using version 1 of the Cochrane risk of bias tool for randomised trials (Higgins 2011).

Allocation

All studies randomised participants to either intervention or control groups. However, the method of randomisation was described in only one study (Moore 2012). Allocation concealment was not reported in any of the studies. As such, it is difficult to ascertain if the methods of randomisation and allocation were appropriate.

Blinding

Blinding of participants and personnel was reported in three studies. Butler 2008 reported that research assistants who delivered the intervention were not blind and that the parents and teachers who reported outcomes were not blind to treatment status. Similarly, Evans 2007 reported that both personnel and participants were not blind to treatment status. Moore 2012 reported that teachers were trained and delivered the intervention.

Blinding of outcome assessment was stated in two studies (Butler 2008; Evans 2007) as not blind, as in both studies assessments were conducted by parents and teachers of study participants. It was not reported in the studies by Moore 2012 and Varni 1993.

Incomplete outcome data

The impact of incomplete outcome data due to attrition was assessed as low risk in two studies at less than 30% (Butler 2008; Varni 1993). It was determined as high risk at greater than 30% in the studies by Evans 2007 and Moore 2012.

Selective reporting

In the study by Varni 1993, in some cases the narrative reporting of results was not supported by statistical information and was assessed as high risk of reporting bias. Similarly, in the study by Butler 2008, the narrative reporting of results was often not supported by statistical estimates of effect and was assessed as high risk of reporting bias. In the other two studies, reporting bias was reported as low risk.

Other potential sources of bias

The study by Evans 2007 used a cluster‐RCT design and we therefore assessed potential risk of additional bias for this study. For this study, we assessed recruitment to cluster bias as low risk, and baseline imbalance as low risk as schools were randomly assigned to the condition. There was no loss of clusters and the authors included an assessment of risk of contamination and we assessed both of these as low risk. Similarly, we assessed incorrect analysis bias as low risk as the analysis used hierarchical linear models to compare outcomes to account for school membership. We assessed as 'unclear' risk of bias compatibility with individually randomised RCTs, due to a lack of information.

Figure 3 and Figure 4 provide summaries of the risk of bias associated with each study as determined by the review authors (TB plus one of MK or FDLMG).

3.

Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies

4.

Risk of bias summary: review authors' judgements about each risk of bias item for each included study

Overall risk of bias for each included study was assessed as high risk because all studies had at least one domain at high risk of bias.

Effects of interventions

See: Table 1

Meta‐analysis, as described in the protocol for this review (Tollit 2015), was not possible due to the small number of studies for each outcome, which would preclude an accurate estimation of between‐study variability for random effects meta‐analysis. Here, we summarise results from studies grouped by outcome and which reported either an overall outcome measure or specific individual subscales of an outcome measure where an overall measure of effect was not available or could not be calculated.

Outcome data were presented in a variety of ways from effect sizes with 95% confidence intervals (Evans 2007) to a narrative description of 'statistical significance' accompanied in some instances by the reporting of F values and P values (Moore 2012; Varni 1993). However, wherever possible, we calculated the effect estimate based on the statistics provided by study authors as SMD together with CIs and P values. These are also reported in the Direction of Effects (Table 4), where available. Where not possible, we have reported the supporting information that the study authors provided. Where necessary, we contacted study authors for additional information but none was received.

3. Direction of effects.

Outcome/studies	Outcome measure/s	Follow‐up time point (months)	Sample size (intv/contrl)	Available data	Direction of effect	Vote counting (selected item and assigned value)	Notes
CERTAINTY OF EVIDENCE ‐ VERY LOW:
School engagement
Butler 2008	Created two indexes for working memory and attention (see Description of studies for more information)	6	90/52	SMD1 0.15, (95% CI ‐0.07 to 0.37), P = 0.19 SMD2 0.02,(95% CI ‐0.19 to 0.23), P = 0.88	⇑         ⇑	1 _
Evans 2007	Behavior Assessment System for Children; Disruptive Behaviour Disorders Rating Scale   Social Skills Rating Scale	30	29/24	SMD ‐0.76, NS     SMD 0.51, NS	⇑     ⇑	1     ¯	Negatively rated scales
Moore 2012	Sentence and Bead Memory subtests from the Stanford–Binet 4th edition	12	15/17	SMD3 ‐0.21, (95% CI ‐0.91 to 0.48) P = 0.65 SMD4 0.73, (95% CI 0.01 to 1.45) P = 0.01	⇓         ⇑	0 _
Varni 1993	Child Behavior Checklist (CBCL)‐Parent Report Form         Social competence subscale of the CBCL	9	23/19	SMD ‐0.2, (95% CI ‐0.83 to 0.38) P = 0.03   NR	⇑         ¯	1         ¯	Negatively rated scales         Between‐group differences not reported
Academic achievement
Butler 2008	The authors' derived index from 4 tests: Woodcock‐Johnson Test of Achievement, Wide Range Achievement Test‐Third Edition, Reading Comprehension Test, Wechsler Intelligence Scale for Children (WISC ‐III)	6	90/52	SMD 0.19, (95% CI 0.07 to 0.31), P = 0.003	⇑	1
Evans 2007	Measured academic achievement as a component of the authors' derived measure of school functioning	30	29/24	_	_	_	The authors provided a narrative description of the results of the academic achievement subscale "no interpretable trends in the outcomes" p. 265.
Moore 2012	Woodcock–Johnson Tests of Achievement: reading, calculation, applied mathematics, spelling	12	15/17	SMD5 0.87, (95% CI ‐.06 to 1.37) P < 0.001 SMD6 1.47, (95% CI 0.12 to 1.57), P = 0.07 SMD7 ‐0.39, (95% CI ‐0.99 to 0.40), P = 0.07 SMD8 ‐0.16, (95% CI ‐0.84 to 0.55) P = 0.37	⇑         ⇑       ⇓     ⇓	_ _ 0 _
Transition back to school
Varni 1993	The authors' derived school subscale	9	15/15	SMD 0.18, (95% CI ‐0.46 to 0.96), NS	⇑	1
CERTAINTY OF EVIDENCE ‐ LOW:
Mental health
Butler 2008	Culture‐Free Self‐Esteem Inventory, 2nd ed.	6	90/50	SMD 0.1, (95% CI ‐0.16 to 0.37) P = 0.45	⇑	1
Varni 1993	Self‐Perception Profile for Children	9	13/10	SMD 0.85, (95% CI 0.11 to 1.86) P = 0.028	⇑	1
Quality of life
NR
Adverse effects
NR

All included studies were RCTs. Evans was a cluster‐RCT.

CBCL: Child Behavior Checklist 
CI: Confidence Interval 
ctrl: Control 
intv: Intervention 
NR : not reported
NS:= not statistically significant
SMD: Standard Mean Difference 
WISC‐III: Wechsler Intelligence Scale for Children (3 sub‐scales) 
 

Direction of arrow/diamond: up = positive impact; down = negative impact

SMD¹ Working memory
SMD² Attention
SMD³ Working memory (verbal)
SMD⁴ Working memory (visual)
SMD⁵ Applied mathematics subscale
SMD⁶ Calculation subscale
SMD⁷ Reading subscale
SMD⁸ Spelling subscale

Vote counting metric: selected for inclusion in vote counting based on Decision Rule, 1 = positive impact, 0 = negative impact

Bold = Selected item based on Decision Rule.

Decision Rule: Overall measure statistic (behaviours > social skills/competence) > subscale measure statistic: working memory (verbal) > working memory (visual) > attention > reading > applied mathematics > spelling > calculation

Specifically, the DR was applied to the two outcome measures school engagement and academic achievement as follows. For the outcome school engagement, the following hierarchy was used to select one measure for inclusion in the synthesis: overall measure > working memory (verbal) > working memory (visual) > attention. For the outcome academic achievement, the following hierarchy was used: overall measure > reading > applied mathematics > spelling > calculation.

Primary outcomes

School engagement

As mentioned previously, school engagement is multifaceted involving three main domains: (1) behavioural engagement, which can include measures such as the Behavior Assessment System for Children, used by (Evans 2007) and the Child Behavior Checklist (CBCL), used by (Varni 1993); (2) emotional engagement, which can include measures of social competence/skills ‐ Evans 2007 used the Social Skills Rating System, and Varni 1993 used the social competence subscale of the CBCL; and (3) cognitive engagement, which can include measures of cognitive functioning e.g. working memory and attention ‐ used by Butler 2008 and Moore 2012. All four studies reported data relating to at least one of the main domains of school engagement, although no study included a global measure of school engagement. Three studies (Butler 2008; Moore 2012; Varni 1993) reported multiple data relating to school engagement. For these studies, the previously defined decision rule was used to select the most clinically appropriate outcome to include in the data synthesis. Table 2 summarises the findings of all data relating to school engagement, including those not included in the data synthesis.

Based on the vote counting method, there was evidence that education support improved school engagement with three of four studies favouring the intervention. However, the overall certainty of evidence for this finding was judged to be very low (see Table 2). Although in total the four studies measured all three domains of school engagement (behavioural, emotional and cognitive), there was considerable heterogeneity/inconsistency of both outcome measures used and results. No studies used a standardised specific measure of school engagement. Outcome measures used thus addressed a restricted version of the main review question in terms of this primary outcome. All studies had at least one domain at high risk of bias and as such we assessed the overall risk of bias for this outcome to be high. In addition, all studies had small sample sizes and the majority had high levels of attrition and half used per‐protocol analysis (i.e. high levels of missing data).

Taken together, we are uncertain whether education support interventions improve school engagement.

Academic achievement

Overall, three of the four studies measured academic achievement but only two studies provided effect estimates. Based on the vote counting method, we found contradictory results from the two included studies: one study showed a positive direction of effect and the second study showed a negative direction of effect. The certainty of evidence for this finding was also judged to be very low (see Table 2). In the third study that could not be included in the vote counting (Evans 2007), the authors provided a narrative description of the results of the academic achievement subscale stating that there were "no interpretable trends in the outcomes" (p. 265).

Overall, therefore, we are uncertain whether education support interventions improve measures of academic achievement.

Secondary outcomes

Transition to school/school re‐entry

One study (Varni 1993) measured the effect of an education support intervention on the child's transition back to school after hospitalisation and treatment for cancer. Varni 1993 reported this as a "School subscale", but no information was provided on what or how the subscale was derived.

Based on the vote counting method, the single study (Varni 1993) measured transition back to school and found a positive impact of education support favouring the intervention (SMD 0.18, 95% CI [‐0.46, 0.96]). The result came from a single study with a small sample size (n = 30), and produced a confidence interval that indicated the possibility of a very small or no effect. We therefore downgraded the GRADE certainty of evidence by two points to very serious, for the item of imprecision. Overall, certainty of evidence was judged to be very low (see Table 4). As such, we are uncertain whether education support improves transitions back to school following hospitalisation for children and young people with chronic health conditions.

Mental health

Based on the vote counting method, two of the four studies measured mental health (measured as self‐esteem). Both studies reported a positive impact of education support interventions on self‐esteem.

This was the only outcome for which the overall certainty of evidence was judged to be low rather than very low (see Table 2). We therefore suggest there is some evidence that education support may improve mental health slightly, measured as self‐esteem.

Qualtiy of life

None of the studies measured or reported quality of life.

Adverse outcomes

None of the studies measured or reported adverse effects.

Discussion

Summary of main results

This systematic review evaluated four studies of varied education support interventions for children with chronic illnesses. All studies were carried out in the United States of America between the years of 1992 and 2011 and had an average length of follow‐up of 14 months. All studies were disease‐specific, with three focusing on children with cancer (Butler 2008; Moore 2012; Varni 1993) plus one study that focused on children with ADHD (Evans 2007). Two of these cancer studies included education support interventions that focused on the well‐established and known effect of cancer treatment on the child's working memory and processing speed (Campbell 2007).

Meta‐analysis of results was not possible due to the small number of studies for each outcome, which would preclude an accurate estimation of between study variability for random‐effects meta‐analysis. Our synthesis, therefore, used vote counting based on the direction of effect/impact of the intervention compared to the control group at follow‐up. Studies and data were grouped by outcome. A summary of the vote counting, measures included and the direction of effects can be found in Table 4.

Findings from this review lead us to say that we are uncertain whether education support interventions improve either academic achievement or school engagement. Of the secondary outcomes, we are uncertain whether education support interventions improve transition back to school/school re‐entry. However, we suggest there is some evidence that education support may improve mental health, measured as self‐esteem, slightly. Quality of life was not measured in any included study. No adverse effects were measured or reported in any of the included studies.

Overall completeness and applicability of evidence

Currently, most major children's hospitals or hospital departments in developed countries have hospital‐based education support programmes and teachers to work with children with chronic health conditions. Such programmes typically work across chronic illness types (i.e. non‐categorical) addressing the common experience of children with chronic health conditions of being absent from school and potentially disengaged from the curriculum, teachers and peers. None of the studies included in this review adopted a non‐categorical approach; all four studies were chronic illness‐specific. The education support interventions in the studies by Varni 1993 (a school reintegration programme with social skills training) and Evans 2007 (a school‐based consultation programme) potentially have more applicability to a non‐categorical approach to the provision of education support for children and adolescents with chronic health conditions. In particular, the school re‐entry/reintegration programme in the study by Varni 1993 commenced at the time of a young person's diagnosis of cancer and included support directly with the young person, their family, school teachers and peers, and continued until after the child's re‐entry to school. This form of early intervention, continuity of care (from hospital to home to school) and provision of support across the child's socioecological levels are considered key features of education support programmes (Madan‐Swain 2008; Prevatt 2000).

Quality of the evidence

We assessed the overall quality/certainty of evidence grouped by outcome measure using the GRADE approach and the GRADEpro software. Two people (TB and FDLMG) independently conducted the assessments and where there were inconsistencies, they were resolved through discussion. The final assessment of the quality of evidence and reasons for any downgrading are provided in Table 2. The overall quality of evidence was judged to be low for the outcome of mental health (measured as self‐esteem), and very low for the outcomes of academic achievement, school engagement and return to school. Assessment of all outcomes was downgraded due to the high risk of bias of studies; all individual studies had at least one RoB domain assessed as high risk. Assessment of all outcomes was also downgraded for concerns about serious imprecision. The secondary outcome "Transition back to school" was downgraded an additional level to very serious imprecision due to a reliance on a single confidence interval that indicated the possibility of a very small or no effect. School engagement was downgraded due to limitations of indirectness: for addressing a restricted version of the main review question in terms of the varied types of interventions and outcomes used. Academic achievement was downgraded due to inconsistency. The results from two studies were contradictory: one of the studies showed a positive direction of effect and the other study showed a negative direction of effect.

It is worth noting that two studies (Butler 2008; Moore 2012) used per‐protocol analysis which is not as preferred as intention‐to‐treat analysis for effectiveness evaluations as it does not reflect 'real‐world' applicability or support generalisation of the results. The study by Evans 2007 was based on ITT analysis. In the study by Varni 1993, insufficient information was provided in order to determine which type of analysis was used.

Potential biases in the review process

No potential biases were identified in the review process by any of the authors.

Agreements and disagreements with other studies or reviews

This is the first systematic review on the topic making comparison and discussion with other studies and reviews somewhat problematic but importantly appropriate. Our findings share some similarities to the systematic review by Canter 2012 that examined school reintegration programmes and their effect on the outcomes of changing knowledge about, and attitudes towards, chronic illnesses primarily among the ill student's teachers and peers. By contrast, our review examined the impact of educational support services on school engagement and academic attainment outcomes as experienced by students with chronic health conditions who had received educational support services. Nonetheless, they concluded that their analysis provides support for the effectiveness of school re‐entry interventions in terms of teachers' knowledge about the needs of students with chronic health conditions and, consistent with our findings and conclusion, they highlight the critical need for more empirical work in this area.

Perhaps more relevant for the sake of comparison is the study by Linden 2018 which conducted a systematic review of educational interventions for children and adolescents with acquired brain injury (ABI). While ABI is not considered a chronic health condition as per the definition by the Centres for Disease Control and the definition adopted for this review, it is instead included in the CDC definition of trauma injury; yet children and adolescents with ABI share similar functional impairments and challenges to their peers with chronic health conditions. As evidence of this, Linden 2018 stated that "Children with brain injuries face significant challenges in their recovery. One of the greatest is transitioning from hospital/home to school where they face issues such as reintegration, lack of understanding and catching up with missed work. Many children struggle with their altered circumstances and require additional supports to meet the academic demands of systems which are ill equipped to teach them" (p. 311). In their systematic review, they set out to summarise the best available evidence for the use of educational interventions to improve academic attainment in childhood survivors of ABI. They found four studies that met their inclusion criteria, one of which was the study by Butler 2008 that also met the inclusion criteria for our review. They concluded that their review "suggests that no currently effective educational interventions exist for children with ABI. Greater efforts are required to produce effective and rigorously tested interventions to improve outcomes for these children." (p. 311). Taken together, our findings and conclusions are congruent with and echo those of the limited number of other reviews in this field.

Authors' conclusions

Implications for practice.

School engagement is important for a child or adolescent with a chronic health condition as a predictor of both social and emotional well‐being and quality of life (Abbott‐Chapman 2013; Bond 2007; Hancock 2013) especially as survival of this cohort continues to improve. While the definition of school engagement is clear (Fredricks 2004), it was disappointing that there were no studies spanning different chronic illnesses (non‐categorical) as the effects of a chronic illness on a child's or young person's education are by definition common and which therefore lend themselves to larger studies. Three studies included in this review focused on students/children with cancer, and one study focused on students with ADHD. The review question for this systematic review was to examine the effectiveness of educational support interventions for children and adolescents living with a chronic illness on school engagement and academic achievement. The review question is purposely and importantly more general than the specific populations covered by the included studies in this review. The fact that no studies spanned different chronic illnesses (i.e. took a non‐categorical approach) or used a standard validated measure of school engagement represents a serious limitation in our ability to answer our review question for the purpose of informing effective practice in this field.

This review has, therefore, demonstrated the infancy of quality research of the effectiveness of education support interventions for children and adolescents with chronic health conditions, a finding that is consistent with other studies (Elam 2015; Pini 2013; Thompson 2015). In addition, based on the studies that were included in this review, the quality of evidence of the effectiveness of education support on the outcomes was low (for mental health) and very low (for academic achievement, school engagement and transition back to school). At best, we can say that we are unsure as to the effectiveness of education support interventions on the outcomes of school engagement, academic achievement and return to school based on the current state of the evidence/science. Nonetheless, we suggest there is some evidence that education support interventions may improve mental health, measured as self‐esteem, slightly.

As Taras 2005 suggested in their review of the literature on associations between student chronic illness and academic achievement, it is useful for educators and school‐based health professionals to be updated on what is known, particularly in terms of the latest evidence about effective practices. This is especially important given teachers' hesitation and concern about their level of expertise to adequately accommodate students with chronic illnesses (Mukherjee 2010; Taras 2005).

Implications for research.

To strengthen the evidence base to inform effective policy and practice in this field, future research would benefit from well‐designed and conducted controlled studies with adequate power and sample sizes which evaluate non‐categorical/illness‐type education support interventions, and include common and validated outcome measures with comprehensive and adequate reporting of results data (e.g. means and standard deviations). In addition to the fact that no studies used a standard validated measure of school engagement, no studies similarly used a validated measure of quality of life (QoL). Measuring QoL is important given that QoL information is not only important for evaluating the effectiveness of educational support interventions, but also essential for evaluating the cost‐effectiveness of these interventions. As such, including a validated measure of QoL in future research is recommended. Some QoL measures for children include a school functioning component (e.g. Paediatric Quality of Life Inventory, Varni 1999). In recent years, support for the collection of standardised Patient Reported Outcome Measures (PROMS) including QoL measures, has gained traction (Ruseckaite 2020) which is consistent with the recommendation in our review. Further, current research in this field, although as it appears in its infancy, predominantly has been conducted in the United States of America suggesting that globally other countries are yet to either develop or trial effective educational support interventions for children and adolescents with chronic health conditions.

History

Protocol first published: Issue 2, 2015

Appendices

Appendix 1. Search strategies

MEDLINE (OVID)

1	Inpatients/ or Hospitalization/ or *chronic disease/ or exp *Neoplasms/ or exp *Crohn Disease/ or exp *Colitis/ or exp *Inflammatory Bowel Diseases/ or exp *Chronic Kidney Disease/ or exp *Cystic Fibrosis/ or exp *Eating Disorders/ or exp *Leukemia/
2	(hospital* or admission* or admitted or (chronic adj (condition* or health* or disease* or disorder* or ill*)) or (life adj long adj (disease* or disorder* or illness*)) or (long adj term adj (disease* or disorder* or illness*)) or (special adj health adj care adj need*) or cancer* or (cystic adj fibrosis) or (eating adj disorder*) or (crohn* adj disease) or (inflammatory adj bowel adj disease*) or colitis or (chronic adj kidney adj disease*)).ti,ab.
3	exp Adolescent/ or exp Child/ or exp pediatrics/
4	(child* or adolescen* or teen* or (young adj person) or (young adj people) or youth* or boy* or girl* or pediatric* or paediatric* or childhood or pupil* or schoolchild* or schoolpupil* or (school adj1 pupil*)).ti,ab.
5	Adolescent, Hospitalized/ or Child, Hospitalized/ or Hospitals, Pediatric/
6	((1 or 2) and (3 or 4)) or 5
7	Remedial Teaching/ or Schools/ or Education/
8	(remedial or integration or (teach* adj aide*) or (medical adj home)).ti,ab.
9	achievement/ or absenteeism/
10	(achiev* or attain* or engag* or participate* or participation or absent* or absence or re‐ent* or reent* or reintegr* or (transition* adj2 school) or (mental adj health) or (quality adj2 life)).ti,ab.
11	6 and (7 or 8) and (9 or 10)
12	((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts) or teacher* or schoolteacher*) adj4 (achiev* or attain* or engag* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or aide or perform* or function* or abilit*)).ti,ab.
13	(((School* or academic or cognitive or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts)) adj4 (support or service* or intervention* or tuition or tutoring or remedial or tutored or training)) or (intervention adj (study or studies))).ti,ab.
14	6 and 12 and 13
15	Adolescent, Hospitalized/ed or Child, Hospitalized/ed
16	(inpatients/ed or hospitalization/ed) and (3 or 4)
17	11 or 14 or 15 or 16

Embase (OVID)

1	Hospital patient/ or Hospitalization/ or *chronic disease/ or exp *Neoplasm/ or exp *Cystic Fibrosis/ or exp *Eating Disorder/ or exp *Scoliosis/
2	(hospital* or admission* or admitted or (chronic adj (condition* or health* or disease* or disorder* or ill*)) or (life adj long adj (disease* or disorder* or illness*)) or (long adj term adj (disease* or disorder* or illness*)) or (special adj health adj care adj need*) or cancer* or (cystic adj fibrosis) or (eating adj disorder*)).ti,ab.
3	exp Adolescent/ or exp Child/ or exp pediatrics/
4	(child* or adolescen* or teen* or (young adj person) or (young adj people) or youth* or boy* or girl* or pediatric* or paediatric* or childhood or pupil* or schoolchild* or schoolpupil* or (school adj1 pupil*)).ti,ab.
5	Hospitalized adolescent/ or Hospitalized child/ or Child hospitalization/
6	((1 or 2) and (3 or 4)) or 5
7	Teaching/ or School/
8	(remedial or integration or (teach* adj aide*)).ti,ab.
9	achievement/ or academic achievement/ or absenteeism/
10	(achiev* or attain* or engag* or participate* or participation or absent* or absence or re‐ent* or reent* or reintegr*).ti,ab.
11	6 and (7 or 8) and (9 or 10)
12	((School* or academic or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts) or teacher* or schoolteacher*) adj4 (achiev* or attain* or engag* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or perform* or function*)).ti,ab.
13	((School* or academic or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts)) adj4 (support or service* or intervention*)).ti,ab.
14	6 and 12 and 13
15	11 or 14

PsycINFO (OVID)

1	Hospitalized patients/ or Hospitalization/ or *chronic illness/ or exp *Neoplasms/ or exp *colon disorders/ or exp *Colitis/ or exp *Kidney Diseases/ or exp *Cystic Fibrosis/ or exp *Eating Disorders/ or exp *Leukemias/
2	(hospital* or admission* or admitted or (chronic adj (condition* or health* or disease* or disorder* or ill*)) or (life adj long adj (disease* or disorder* or illness*)) or (long adj term adj (disease* or disorder* or illness*)) or (special adj health adj care adj need*) or cancer* or (cystic adj fibrosis) or (eating adj disorder*) or (crohn* adj disease) or (inflammatory adj bowel adj disease*) or colitis or (chronic adj kidney adj disease*)).ti,ab.
3	exp Adolescent development/ or exp Child development/ or exp pediatrics/
4	(child* or adolescen* or teen* or (young adj person) or (young adj people) or youth* or boy* or girl* or pediatric* or paediatric* or childhood or pupil* or schoolchild* or schoolpupil* or (school adj1 pupil*)).ti,ab.
5	(1 or 2) and (3 or 4)
6	Remedial Teaching/ or Schools/ or Education/
7	(remedial or integration or (teach* adj aide*) or (medical adj home)).ti,ab.
8	achievement/ or academic achievement/ or school attendance/
9	(achiev* or attain* or engag* or participate* or participation or absent* or absence or re‐ent* or reent* or reintegr* or (transition* adj2 school) or (mental adj health) or (quality adj2 life)).ti,ab.
10	5 and (6 or 7) and (8 or 9)
11	((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts) or teacher* or schoolteacher*) adj4 (achiev* or attain* or engag* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or aide or perform* or function* or abilit*)).ti,ab.
12	(((School* or academic or cognitive or education* or curricul* or math* or numeracy or literacy or (key adj stage*) or ELA or (english adj language adj arts)) adj4 (support or service* or intervention* or tuition or tutoring or remedial or tutored or training)) or (intervention adj (study or studies))).ti,ab.
13	5 and 11 and 12
14	10 or 13
15	limit 14 to yr="1900 ‐ 2020"

PubMed

#1	All fields
	"hospital*" OR "admission*" OR "admitted" OR “inpatient*” OR "chronic‐condition*” OR "chronic‐health" OR "chronic‐disease*” OR "chronic‐disorder*" OR "chronic‐illness*" OR "life‐long‐disease*" OR "life‐long‐disorder*" OR "life‐long illness*" OR "long‐term‐disease*" OR "long‐term‐disorder*" OR "long‐term‐illness*" OR "lifelong‐disease*" OR "lifelong‐disorder*" OR "lifelong illness*" OR "special‐health‐care‐need*" OR "cancer*" OR "leukemia*" OR “leukaemia*” OR "cystic‐fibrosis" OR "eating‐disorder*” OR "colitis" OR "kidney‐disease*"
#2	Title/Abstract
	"child*" OR "adolescen*" OR "teen*" OR "young‐person" OR "young‐people" OR "youth*" OR "boy" OR "boys" OR "girl*" OR "pediatric*" OR "paediatric*" OR "childhood" OR "pupil*" OR "schoolchild*" OR "schoolpupil*" OR "school‐pupil*"
#3	Title/Abstract
	"school*" OR "student*" OR "academic" OR "education*" OR "curricul*" OR "math" OR "maths" OR "mathematic*" OR "numeracy" OR "literacy" OR "key‐stage" OR "english‐language‐arts" OR "teacher*" OR "schoolteacher*"
#4	Title/Abstract
	"support" OR "service*" OR "intervention*" OR "tuition" OR "tutoring" OR "remedial" OR "tutored"
#5	Title/Abstract
	"intervention‐stud*" OR "integrat*" OR "teacher‐aide" OR "medical‐home"
#6	Title/Abstract
	"achiev*" OR "attain*" OR "engag*" OR "participat*" OR "absent*" OR "absence" OR "re‐ent*" OR "reent*" OR "reintegr*" OR "perform*" OR "function*" OR "abilit*" OR "transit*" OR "mental‐health" OR "mental‐illness" OR "quality‐of‐life"
#7	All fields
	NOTNLM OR publisher[sb] OR inprocess[sb] OR pubmednotmedline[sb] OR indatareview[sb] OR pubstatusaheadofprint
#8	#1 AND #2 AND #3 AND #4 AND #5 AND #6 AND #7
	Limited from 2019

ASSIA

(TI,AB(hospital* OR admission* OR admitted OR "chronic condition" OR "chronic conditions" OR chronic PRE/1 (health OR disease* OR disorder* OR illness*) OR (life PRE/0 long PRE/1 (disease* OR disorder* OR illness*)) OR (long PRE/0 term PRE/1 (disease* OR disorder* OR illness*)) OR "special health care need" OR "special health care needs" OR cancer* OR "cystic fibrosis" OR "eating disorder" OR "eating disorders" OR (crohn* PRE/1 disease) OR "kidney disease" OR "inflammatory bowel disease") AND TI,AB(child* OR adolescen* OR teen* OR "young person" OR "young people" OR youth* OR boy* OR girl* OR pediatric* OR paediatric OR pupil* OR schoolchild* OR schoolpupil* OR (school PRE/1 pupil*))) AND TI,AB((School* OR student* OR academic OR education* OR curricul* OR math* OR numeracy OR literacy OR (key PRE/1 stage) OR ELA OR "english language arts" OR teacher* OR schoolteacher*) NEAR/4 (achiev* OR attain* OR engag* OR participat* OR absent* OR absence* OR re‐ent* OR reent* OR reintegr* OR aide OR perform* OR function* OR abilit*)) AND TI,AB(((School* OR student* OR academic OR education* OR curricul* OR math* OR numeracy OR literacy OR (key PRE/1 stage) OR ELA OR "english language arts") NEAR/4 (support* OR service* OR intervention* OR tuition OR tutor* OR remedial OR training)) OR "intervention study" OR "intervention studies")

ERIC (EBSCO)

S1	DE ("Hospitals" or “Hospitalized children” OR "Chronic Illness" OR "Cancer" OR "Diseases" OR "Eating Disorders")
S2	AB (hospital* or admission* or admitted or (chronic W1 condition*) or chronic W1 (health or disease* or disorder* or ill*) or (life W1 long W1 (disease* or disorder* or illness*)) or (long W1 term W1 (disease* or disorder* or illness*)) or (special W1 health W1 care W1 need*) or cancer* or (cystic W1 fibrosis) or (eating W1 disorder*) or (anorexia W1 nervosa) or (chronic W1 kidney W1 disease) or colitis or (inflammatory W1 bowl W1 (disease or syndrome)) or (crohn's W1 disease)) or TI (hospital* or admission* or admitted or (chronic W1 condition*) or chronic W1 (health or disease* or disorder* or ill*) or (life W1 long W1 (disease* or disorder* or illness*)) or (long W1 term W1 (disease* or disorder* or illness*)) or (special W1 health W1 care W1 need*) or cancer* or (cystic W1 fibrosis) or (eating W1 disorder*) or (anorexia W1 nervosa) or (chronic W1 kidney W1 disease) or colitis or (inflammatory W1 bowel W1 (disease or syndrome)) or (crohn's W1 disease))
S3	DE (“Adolescents" or “Adolescent Attitudes" or "Adolescent Development" or "Children" or “At risk students” or “Special needs students” or "Pediatrics")
S4	AB (child* or adolescen* or teen* or (young W1 person) or (young W1 people) or youth* or boy* or girl* or pediatric* or paediatric or pupil* or schoolchild* or schoolpupil* or (school W1 pupil*)) OR TI (child* or adolescen* or teen* or (young W1 person) or (young W1 people) or youth* or boy* or girl* or pediatric* or paediatric or pupil* or schoolchild* or schoolpupil* or (school W1 pupil*))
S5	(S1 OR S2) AND (S3 OR S4)
S6	DE (“Education” or "Health Education" or "Comprehensive School Health Education" or "Schools" or "Remedial Instruction" or "Regular and Special Education Relationship")
S7	AB (remedial or integration or (teach* W1 aide*) or (medical W1 home)) OR TI (remedial or integration or (teach* W1 aide*) or (medical W1 home))
S8	DE ("Academic Achievement" or "Attendance")
S9	AB (achiev* or attain* or engage* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or (transition* W2 school) or (mental W1 health) or (quality W2 life)) OR TI (achiev* or attain* or engage* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or (transition* W2 school) or (mental W1 health) or (quality W2 life))
S10	S5 AND (S6 OR S7) AND (S8 OR S9)
S11	AB ((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts) or teacher* or schoolteacher*) N4 (achiev* or attain* or engag* or participat* or absent* or absence* or re‐ent* or reent* or reintegr* or perform* or function* or abilit* or aide)) OR TI ((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts) or teacher* or schoolteacher*) N4 (achiev* or attain* or engag* or participat* or absent* or absence* or re‐ent* or reent* or reintegr* or perform* or function* or abilit* or aide))
S12	AB (((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts)) N4 (support* or service* or intervention* or tuition or tutor* or remedial or training)) or (intervention W1 study) or (intervention W1 studies))) OR TI (((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts)) N4 (support* or service* or intervention* or tuition or tutor* or remedial or training)) or (intervention W1 study) or (intervention W1 studies)))
S13	S5 AND S11 AND S12
S14	S10 OR S13

CINAHL (EBSCO)

S1	MH ("Inpatients" OR "Hospitalization") OR MM ("Chronic Disease" OR "Neoplasms+" OR "Cystic Fibrosis+" OR "Eating Disorders+" OR "Inflammatory Bowel Diseases+" OR “Crohn Disease” OR “Colitis+” OR "Kidney Diseases+" OR Leukemia+)
S2	AB (hospital* or admission* or admitted or (chronic W1 condition*) or chronic W1 (health or disease* or disorder* or ill*) or (life W1 long W1 (disease* or disorder* or illness*)) or (long W1 term W1 (disease* or disorder* or illness*)) or (special W1 health W1 care W1 need*) or cancer* or (cystic W1 fibrosis) or (eating W1 disorder*) or (crohn W1 disease) or (chronic W1 kidney W1 disease) or imflammatory W1 bowel W1 disease)) or TI (hospital* or admission* or admitted or (chronic W1 condition*) or chronic W1 (health or disease* or disorder* or ill*) or (life W1 long W1 (disease* or disorder* or illness*)) or (long W1 term W1 (disease* or disorder* or illness*)) or (special W1 health W1 care W1 need*) or cancer* or (cystic W1 fibrosis) or (eating W1 disorder*) or (crohn W1 disease) or (chronic W1 kidney W1 disease) or imflammatory W1 bowel W1 disease))
S3	AB (child* or adolescen* or teen* or (young W1 person) or (young W1 people) or youth* or boy* or girl* or pediatric* or paediatric or pupil* or schoolchild* or schoolpupil* or (school W1 pupil*)) OR TI (child* or adolescen* or teen* or (young W1 person) or (young W1 people) or youth* or boy* or girl* or pediatric* or paediatric or pupil* or schoolchild* or schoolpupil* or (school W1 pupil*))
S4	MH ("Child+" OR "Pediatrics+" OR "Adolescence+")
S5	MH ("Child, Hospitalized" or "Adolescent, Hospitalized" or "Hospitals, Pediatric")
S6	((S1 OR S2) AND (S3 OR S4)) OR S5
S7	MH ("Remedial Teaching" OR "Schools" OR “Education”)
S8	AB (remedial or integration or (teach* W1 aide*) or (medical W1 home)) OR TI (remedial or integration or (teach* W1 aide*) or (medical W1 home))
S9	MH ("Achievement" OR "Absenteeism" OR "Academic Performance+")
S10	AB (achiev* or attain* or engage* or participat* or absent* or absence or re‐ ent* or reent* or reintegr* or (transition* W2 school) or (mental W1 health) or (quality W2 life)) OR TI (achiev* or attain* or engage* or participat* or absent* or absence or re‐ ent* or reent* or reintegr* or (transition* W2 school) or (mental W1 health) or (quality W life))
S11	S6 AND (S7 OR S8) AND (S9 OR S10)
S12	AB ((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts) or teacher* or schoolteacher*) N4 (achiev* or attain* or engag* or participat* or absent* or absence* or re‐ent* or reent* or reintegr* or aide or perform* or function* or abilit*)) OR TI ((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts) or teacher* or schoolteacher*) N4 (achiev* or attain* or engag* or participat* or absent* or absence* or re‐ent* or reent* or reintegr* or aide or perform* or function* or abilit*))
S13	AB (((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts)) N4 (support* or service* or intervention* or tuition or tutor* or remedial or training)) or (intervention W1 study) or (intervention W1 studies))) OR TI (((School* or student* or academic or education* or curricul* or math* or numeracy or literacy or (key W1 stage) or ELA or (english W1 language W1 arts)) N4 (support* or service* or intervention* or tuition or tutor* or remedial or training)) or (intervention W1 study) or (intervention W1 studies)))
S14	S6 AND 12 AND 13
S15	(MH "Adolescent, Hospitalized/ED") OR (MH "Child, Hospitalized/ED")
S16	((MH "Inpatients/ED") OR (MH "Hospitalization/ED")) AND (S3 OR S4)
S17	S11 OR S14 OR S15 OR S16

Cochrane Central (Cochrane library)

ID	Search
#1	MeSH descriptor: [Patients] this term only
#2	MeSH descriptor: [Hospitalization] this term only
#3	MeSH descriptor: [Chronic Disease] this term only
#4	MeSH descriptor: [Neoplasms] explode all trees
#5	MeSH descriptor: [Crohn Disease] explode all trees
#6	MeSH descriptor: [Colitis] explode all trees
#7	MeSH descriptor: [Inflammatory Bowel Diseases] explode all trees
#8	MeSH descriptor: [Renal Insufficiency, Chronic] explode all trees
#9	MeSH descriptor: [Cystic Fibrosis] explode all trees
#10	MeSH descriptor: [Eating Disorders] explode all trees
#11	MeSH descriptor: [Leukemia] explode all trees
#12	{or #1‐#11}
#13	hospital* or admission* or admitted or (chronic and (condition* or health* or disease* or disorder* or ill*)) or ("life long" and (disease* or disorder* or illness*)) or ("long term" and (disease* or disorder* or illness*)) or "special health care needs" or cancer* or leukemia* or "cystic fibrosis" or "eating disorder" or colitis or "chronic kidney disease"
#14	MeSH descriptor: [Adolescent, Hospitalized] explode all trees
#15	MeSH descriptor: [Child, Hospitalized] explode all trees
#16	#14 or #15
#17	MeSH descriptor: [Adolescent] explode all trees
#18	MeSH descriptor: [Child] explode all trees
#19	MeSH descriptor: [Pediatrics] explode all trees
#20	{or #17‐#19}
#21	child* or adolescen* or teen* or "young person" or "young people" or youth* or boy* or girl* or pediatric* or paediatric* or childhood or pupil* or schoolchild* or schoolpupil*
#22	((#12 or #13) and (#20 or #21)) or #16
#23	MeSH descriptor: [Remedial Teaching] this term only
#24	MeSH descriptor: [Schools] explode all trees
#25	#23 or #24
#26	remedial or integration "medical home"
#27	MeSH descriptor: [Achievement] explode all trees
#28	MeSH descriptor: [Educational Status] this term only
#29	achiev* or attain* or engag* or participate* or participation or absent* or absence or re‐ent* or reent* or reintegr* or "transisition back to school" or "mental health" or "quality of life"
#30	#22 and (#25 or #26) and {or #27‐#29}
#31	(school* or student* or academic or education* or curricul* or math* or numeracy or literacy or "key stage" or "english language arts" or teacher* or schoolteacher*) and (achiev* or attain* or engag* or participat* or absent* or absence or re‐ent* or reent* or reintegr* or aide or perform* or function* or abilit*)
#32	(school* or academic or cognitive or education* or curricul* or math* or numeracy or literacy or "key stage" or "english language arts") and (support or service* or intervention* or tuition or tutoring or remedial or tutored or training)
#33	#22 and #31 and #32
#34	#30 or #33

ClinicalTrials

Advanced Search:

Condition or disease	Chronic Illness
Intervention	Education OR School OR Teacher OR Teaching
Study type	Intervention Studies
Study Results	Studies With Results
Age Group	Child (birth – 17)
Status	Completed

WHO International Clinical Trials Registry Platform

Title	chronic or special or illness* or cancer or kidney or col* or cystic or crohn* or inflammatory or colitis
AND
Intervention	teach* or school* or educate* or medical home

ProQuest Dissertations & Theses Global

1	AB,TI(Chronic* N/1 (condition* or health* or disease* or disorder* or ill*) OR “special health care” OR cancer* OR “cystic fibrosis” or (eating N1 disorder*) or (crohn* N/1 disease) or “inflammatory bowel” or colitis or (kidney N/1 disease*))
2	AB,TI(child* or adolescen* or teen* or “young person” or “young people” or youth* or boy* or girl* or pediatric* or paediatric* or childhood or pupil* or schoolchild* or schoolpupil* or school N/1 pupil*)
3	AB,TI((School* or academic or cognitive or education* or curricul* or math* or numeracy or literacy or “english language arts”) NEAR/4 (support or service* or intervention* or tuition or tutor* or remedial or training))
4	AB,TI(Teach* or school* or education*)
5	AB,TI(achiev* or attain* or engag* or participate* or participation or absent* or absence or re‐ent* or reent* or reintegr* or (transition* N/2 school) or health or (quality N/2 life))
6	1 AND 2
7	3 OR 4
8	5 AND 6 AND 7

ANZ Clinical Trials Registry

· Chronic OR “special health care”

· Interventional studies

· Completed

· Children under 18 yo

OpenGrey

1

Abstract:(teach* OR school* OR educat* OR ((School* OR academic OR cognitive OR education* OR curricul* OR math* OR numeracy OR literacy OR “english language arts”) NEAR/4 (support OR service* OR intervention* OR tuition OR tutor* OR remedial OR training))) AND (achiev* OR attain* OR engag* OR participate* OR participation OR absent* OR absence OR re‐ent* OR reent* OR reintegr* OR (transition* NEAR/2 school) OR health OR (quality NEAR/2 life)) AND (child* OR adolescen* OR teen* OR “young person” OR “young people” OR youth* OR boy* OR girl* OR pediatric* OR paediatric* OR childhood OR pupil* OR schoolchild* OR schoolpupil*)

Characteristics of studies

Characteristics of included studies [ordered by study ID]

Butler 2008.

Study characteristics
Methods	RCT, between‐group analysis Method of randomisation: randomised by central data manager to intervention or waiting list/control at a ratio of 2:1. Actual method not described Outcome assessment: not blind
Participants	Survivors of paediatric malignancy/brain tumours Age: 6‐17 years, M = 11.0 years old, SD = 3.3 Total eligible = 173 of which 163 were randomised; 109 in intervention, 54 in control Withdrawals and dropouts: 29 (27%) from intervention group and 2 from control group. Reasons for non‐completion being: refused testing, unable to be contacted for testing, missing documentation, unknown reason and a medical crisis Severity: not stated Inclusion criteria: attentional disturbance documented by scores on the Continuous Performance Test (CPT; Conners 1992 ) and the Conners’ Parent Rating Scale: Long Version‐Revised (CPRS: LV–R; Conners 1997 ) Exclusion criteria: a history of a documented attention‐deficit disorder prior to the diagnosis of cancer/brain tumour
Interventions	Intervention Group: A cognitive rehabilitation programme that combined interventions derived from three approaches: brain injury rehabilitation, educational psychology and child clinical psychology. Delivered by supervised graduate‐level clinical psychology students as 2‐hour weekly sessions for a period of 4‐5 months Intervention developed and evaluated by the study author Control Group: Waiting list
Outcomes	School engagement Measured as working memory and attention Working memory: an author‐derived index made up from the Digits Backward (WISC–III; Wechsler 1991), Stroop Color–Word Test (Trial 3; Golden 1978) and the Trail Making Test B (Reitan 1969) Attention: Conners’ Parent Rating Scales‐Revised (CPRS‐R) and the Conners’ Teacher Rating Scale‐Revised (CTRS‐R) (Conners 1997 ). Academic achievement Academic achievement was measured as an author‐derived index made up from seven validated scales, three focused on language and four focused on mathematics (the Woodcock‐Johnson Test (1989), the Wide Range Achievement Test‐Third Edition (WRAT–3; Wilkinson 1993 ) and a Reading Comprehension test (Peabody Individual Achievement Test‐Revised; Dunn 1970). Mental health Measured as self‐esteem: the Culture‐Free Self Esteem Inventory 2nd ed. (Battle 1992) All outcomes measured: baseline and post‐intervention
Notes	Data presented as effect sizes and standard deviations Reported that sample size was projected from power analyses but no calculation was provided
Risk of bias
Bias	Authors' judgement	Support for judgement
Random sequence generation (selection bias)	Unclear risk	Randomised by central data manager to intervention or waiting list/control at a ratio of 2:1
Allocation concealment (selection bias)	Unclear risk	Not described
Blinding of participants and personnel (performance bias) All outcomes	High risk	Reported as not blind although separate research assistant positions were maintained for assessment and treatment (pp. 370‐1)
Blinding of outcome assessment (detection bias) All outcomes	High risk	Outcome assessments reported by parents and teachers who were not blind (p. 370)
Incomplete outcome data (attrition bias) All outcomes	Low risk	29 (27%) from intervention group and 2 from control group. And 60% completed all 20 sessions of intervention. 80% completed at least 75% of intervention (p. 376)
Selective reporting (reporting bias)	High risk	Narrative reporting of results not supported by statistical estimates of effect
Other bias	Low risk	No other bias detected

Evans 2007.

Study characteristics
Methods	RCT, between‐group analysis Method of randomisation: 4 schools randomised into two groups, method not described. After randomisation, 1 additional control school was recruited from within the same school district as one of the included control schools. Outcome assessment: blinding unclear
Participants	Sixth grade adolescents with Attention Deficit Hyperactivity Disorder from 5 middle schools in rural Virginia, USA Age: 10‐14 years, M = 11.9 years old, SD = 0.7 Total eligible not stated. 79 recruited and randomised; 42 in intervention, 37 in control Withdrawals and dropouts: 13 (31%) from intervention group and 13 (35%) from control group. No reasons given Severity: not stated Inclusion criteria: met diagnostic criteria for 1 of the subtypes of ADHD (DSM‐IV‐TR), IQ > 79 (Kaufman Brief Intelligence Test), not met diagnostic criteria for current or previous psychotic episodes Exclusion criteria: not stated
Interventions	Intervention Group: the Challenging Horizons Program – a 3‐year school‐based manualised mentor educator programme involving 15 psychosocial interventions focused on academic and social skills. Mentor educators were supported by a certified school psychologist. Intervention developed and evaluated by the study author Control Group: Community care
Outcomes	School engagement Measured as behaviour including social behaviours and measured by the ADHD‐specific portion of two behaviour measures (Behavior Assessment System for Children, Reynolds 1993; Disruptive Behaviour Disorders Rating Scale, Pelham 1992) and the Social Skills Rating System (Gresham 1990) Academic achievement Measured academic achievement as a component of the authors' derived measure of school functioning: a derived index made up of ratings of academic achievement (parent and teacher) and disruptive classroom behaviour (teacher), being 2 domains in the Impairment Rating Scale (Fabiano 2006) and grade point average based on participants report card grades in science, math, history and reading Outcomes measured: baseline, and every 6 months thereafter with final measurement at 2.5 years
Notes	Data presented as effect sizes and standard deviations No power calculation was reported. Sample size N = 79
Risk of bias
Bias	Authors' judgement	Support for judgement
Random sequence generation (selection bias)	Unclear risk	Unit of randomisation was schools. Process not described (p. 258)
Allocation concealment (selection bias)	Unclear risk	Participants selected from within the school after the school had been randomised, except for one of the control schools which was added from within the same district as the other control schools. Allocation concealment not described
Blinding of participants and personnel (performance bias) All outcomes	High risk	Personnel not blind. Participants not blind e.g. controls given information and permission to access other services (p. 259)
Blinding of outcome assessment (detection bias) All outcomes	High risk	Not blind. Assessments conducted by parents and teachers of study participants (p. 261‐2)
Incomplete outcome data (attrition bias) All outcomes	High risk	13 (31%) from intervention group and 13 (35%) from control group
Selective reporting (reporting bias)	Low risk	Between‐group differences shown statistically in Table 2 were reflected narratively.
Other bias	Low risk	No other bias detected
Recruitment to cluster	Low risk	Schools were randomised to condition and those eligible within each school participated.
Baseline imbalance	Low risk	Schools were randomised to condition.
Loss of clusters	Low risk	There was no loss of clusters.
Incorrect analysis	Low risk	Analysis used hierarchical linear models to compare outcomes to account for school membership.
Contamination	Low risk	Authors assessed risk of contamination (p. 260) and concluded that this domain was low risk.
Compatibility with individually RCTs	Unclear risk	Unable to determine

Moore 2012.

Study characteristics
Methods	RCT, between‐group analysis Method of randomisation: computer‐generated randomisation table Outcome assessment: blinding not stated
Participants	Children newly diagnosed with leukaemia at a childhood cancer centre/hospital in the Southwest of the United States of America Age: range not reported, M = 6.6 years old, SD = 1.8 Total eligible: 57 recruited and randomised; 24 in intervention, 33 in control. 4 withdrawn due to lack of proficiency with English Withdrawls and dropouts: 21 (40%) dropouts with the following reasons given: elective withdrawal, disease (cancer) relapse, family relocation and study funding concluded prior to the child's completion of chemotherapy Severity: Ranged, but all children on "standard" treatment protocol for leukaemia. Treatment involved either a short high‐dose intravenous methotrexate infusion (HD IV‐MTX) or a long HD IV‐MTX infusion in the consolidation phase of treatment. Inclusion criteria: Minimum of 5 years of age, on treatment for childhood leukaemia and who had entered the continuation phase of chemotherapy Exclusion criteria: Non‐English speaking, previous diagnoses of learning disability, Attention‐Deficit Hyperactivity Disorder, mental retardation, psychiatric disorder, neurological disorder, or traumatic brain injury associated with an alteration in consciousness
Interventions	Intervention Group: A mathematics intervention, developed by Moore and based on Multiple Representation Theory, used a multi‐modality approach (such as pictures, abstract symbolism, mathematical language, contexts and concrete manipulatives) to learning mathematics, and involved individual teaching of 1‐2 hours weekly for a period of 1 year. Teachers delivered the intervention and were required to have prior experience in teaching elementary, middle or high school students and have background knowledge in multiple representations for teaching and learning mathematics. Teachers received training by on of the co‐authors. Intervention developed and evaluated by the study author Control Group: Standard care
Outcomes	School engagement Measured as working memory: sentence and Bead Memory subtests from the Stanford–Binet 4th edition (verbal and visual working memory) Academic achievement Measured as academic functioning: Woodcock‐Johnson‐R test of academic achievement (4 subscales: reading, spelling, calculations and applied mathematics) Outcomes measured: baseline, post‐intervention and 1‐year follow‐up
Notes	Per‐protocol analysis; only those who completed 40‐50 hours of the intervention in 1 year and who had completed all three evaluation time points (baseline, post‐intervention and 1‐year follow‐up) were evaluated. Actual assessed sample size (N = 31). No power calculation reported Data presented as effect sizes and standard deviations with P values
Risk of bias
Bias	Authors' judgement	Support for judgement
Random sequence generation (selection bias)	Low risk	Computer‐generated randomisation table (p. 279)
Allocation concealment (selection bias)	Unclear risk	Not described
Blinding of participants and personnel (performance bias) All outcomes	High risk	Teachers were trained and delivered the intervention (p. 280).
Blinding of outcome assessment (detection bias) All outcomes	Unclear risk	Not stated
Incomplete outcome data (attrition bias) All outcomes	High risk	40% attrition. Only those who completed 40‐50 hours of the intervention in 1 year and who had completed all three evaluation time points (baseline, post‐intervention and 1‐year follow‐up) were evaluated.
Selective reporting (reporting bias)	Low risk	Between‐group differences shown statistically were reflected narratively.
Other bias	Low risk	No other bias detected

Varni 1993.

Study characteristics
Methods	RCT, between‐group analysis Method of randomisation: Stratified by age but method of randomisation not described Outcome assessment: blinding not stated
Participants	School‐aged children (Grades K through 8) with newly diagnosed cancer receiving medical treatment at two major paediatric cancer centres in the United States of America Age: range not reported, M = 8.2 years old, SD = 2.4 Total eligible: 77 eligible and recruited: 33 in intervention, 41 in control. Method of allocation unclear/not stated. 13 (17%) dropouts prior to randomisation with the following reasons given: parents changed their mind, recurrent scheduling problems, expired, younger students unable to comprehend assessment procedure. 64 randomised. Size of intervention and control groups not reported Withdrawls and dropouts: 10 (16%) dropouts with the following reasons given: illness complications, study funding concluded prior to the due time of follow‐up assessment Severity: Not stated Inclusion criteria: same as eligibility criteria; school‐aged children up to grade 8 with newly diagnosed cancer receiving medical treatment Exclusion criteria: not stated
Interventions	Intervention Group: A school reintegration programme with: early preventive education and support for patients, parents, medical and school staff, school conferences and classroom presentations for peers and teachers, and regular follow‐up after the child's return to school. It involved a minimum of 2 hours focusing on the importance of an early return to school when medically feasible, plus 5 x 1‐hour sessions focused on the development of social skills (3 prior to return to school, 2 after return to school). A hospital‐based paediatric psychologist delivered the programme, while study research assistants delivered the social skills training components. Intervention developed and evaluated by the study author Control Group: Same school reintegration programme as intervention group but without the social skills training component. Instead the study research assistant delivered 5 x 1‐hour play interaction sessions.
Outcomes	School engagement Measured as behaviour including social behaviour: Child Behavior Checklist‐Parent Report Form, CBCL; Achenbach 1991 Transition back to school Measured as school functioning: Reported results of a "School subscale" but did not provide information on what or how the subscale was based or derived Mental health Measured as self‐esteem: Self‐Perception Profile for Children; Harter 1985 Outcomes measured: baseline, 6 and 9 months post‐intervention
Notes	Data presented as effect sizes and standard deviations for within‐group change over time only. Between‐group results reported in text with accompanying F and P values for results at the P < 0.5 level of statistical significance. Unclear if ITT or PP analysis Reported a power calculation to determine sample size, and the authors also reported that the determined sample size was not met.
Risk of bias
Bias	Authors' judgement	Support for judgement
Random sequence generation (selection bias)	Unclear risk	Stratified by age but method of randomisation not described
Allocation concealment (selection bias)	Unclear risk	Not described
Blinding of participants and personnel (performance bias) All outcomes	Unclear risk	Not stated but likely not blind
Blinding of outcome assessment (detection bias) All outcomes	Unclear risk	Not stated
Incomplete outcome data (attrition bias) All outcomes	Low risk	19% attrition
Selective reporting (reporting bias)	High risk	Narrative reporting of results not supported by statistical information
Other bias	Low risk	No other bias detected

ADHD: Attention Deficit Hyperactivity Disorder
CBCL: Child Behavior Checklist
CPRS (LV‐R): Conners' Parent Rating Scales‐Long Version‐Revised
CPRS (‐R): Conners’ Parent Rating Scales‐Revised
CPT: Continuous Performance Test
CTRS(‐R): Conners’ Teacher Rating Scale‐Revised
DSM‐IV‐TR: Diagnostic and Statistical Manual of Mental Disorders Text Revision Fourth Edition
HD IV‐MTX: High Dose (4) Methotrexate
IQ: Intelligence Quotient
ITT: Intention‐to‐Treat
M: Mean
PP: Per‐protocol
RCT: Randomised Controlled Trial
SD: Standard Deviation
WISC‐III: Wechsler Intelligence Scale for Children (3 subscales)
WRAT‐3: Wide Range Achievement Test‐Third Edition

Characteristics of excluded studies [ordered by study ID]

Study	Reason for exclusion
Baldwin Gracey 2012	Inappropriate population
Baysinger 1993	Did not report results of a trial
Blei 2008	Did not report results of a trial
Bloom 1982	Did not report results of a trial
Bonner 2004	Did not report results of a trial
Chaney 2010	Inappropriate intervention
Cock 1981	Did not report results of a trial
Davies 2010	Did not report results of a trial
Denton 2006	Inappropriate population
DePalma 2007	Did not report results of a trial
Dunlap 2013	Inappropriate population
Eichner 2012	Did not report results of a trial
Ekberg 2010	Inappropriate population
Engelke 2008	Did not report results of a trial
Farmer 2005	Did not report results of a trial
Fels 1999	Did not report results of a trial
Fleischfresser 2004	Inappropriate population
Goodman 1988	Did not report results of a trial
Gross 1985	Inappropriate intervention
Hospital Care 1993	Did not report results of a trial
Houlahan 1991	Did not report results of a trial
Katz 1988	Inappropriate comparator
Kesler 2011	Did not report results of a trial
Lee 2015	Inappropriate intervention
McCormick 1986	Did not report results of a trial
Merry 2011	Inappropriate intervention
Rabin 1994	Did not report results of a trial
Rabiner 2010	Did not report results of a trial
Schlieper 1985	Did not report results of a trial
Sharif 2005	Inappropriate population
Tapp 2011	Inappropriate intervention
Thompson 1996	Inappropriate population
Wolfe 2012	Did not report results of a trial
Ye 2013	Inappropriate intervention
Zhu 2015	Did not report results of a trial

Differences between protocol and review

Two review authors: TB and one of either MT or SR, or (LH, MB or FDLMG – see Acknowledgements) independently screened studies, reviewed studies in full text, and recorded details about final inclusion/exclusion decisions.

During the review process, we came across some health conditions that were difficult to determine if they were indeed chronic illnesses or chronic health conditions and relevant for this review. In such cases, we referred to the Word Health Organisation Pediatric International Classification of Disease (ICD‐10) and consulted with co‐authors. Obesity, for example, is now accepted as a childhood chronic illness. However, we excluded obesity because in the majority of cases it doesn't result in significant absence or disengagement from school.

We included studies if the intervention took place in the context of a Medical Home. In the US, the language of 'Medical Home' was first described over 45 years ago as a way to maintain centralised medical records of children. Since then, and as defined by the American Academy of Pediatric’s position statement, it has evolved to be care that is accessible, continuous, comprehensive, patient‐ and family‐centred, co‐ordinated, compassionate, community‐based and culturally effective (American Academy of Pediatrics Council 2005; Eichner 2012). Specifically, co‐ordinated means "co‐ordinated with educational and other community organizations to ensure that special health needs of the individual child are addressed" (American Academy of Pediatrics Council 2005, p. 1240). Co‐ordination is emphasised and justified in the Policy Statement as follows..."Because children spend a substantial amount of time in school and child care settings, the linkages between health care and educational and child care systems are especially important for many children and youth with special health care needs" (American Academy of Pediatrics Council 2005, p. 1239). Nonetheless, we only included the study if there was specific mention of the Medical Home and co‐ordination with the child's school or educational system.

Some additional search terms were used in some search syntax due to relevance and to increase sensitivity.

Grey literature searches: As nothing was identified within searches of the first five registries, we decided not to continue with searches of the remaining grey literature registries and databases. Thus, we did not proceed with searches in the following grey literature databases:

• Grey literature report (www.greylit.org/);

• National Technical Information Service (www.ntis.gov);

• OpenSIGLE;

• Networked Digital Library of Theses and Dissertations (www.ndltd.org/);

• US National Library of Medicine (www.nlm.nih.gov/hsrinfo/meetingsites.html).

We used the Cochrane RoB assessment instead of the EPOC.

Regarding Unit of analysis issues in the Methods section, as there was only one cluster‐RCT that met the inclusion criteria for this review and it had a small sample size (n = 79) across five schools, it was considered not appropriate to undertake the analysis published in the protocol (Tollit 2015). Instead, we considered the matter of the cluster‐RCT according to the relevant items of the RoB assessment for cluster‐RCTs.

Regarding Data synthesis in the Methods section, as meta‐analysis was not able or appropriate to be undertaken, we synthesised data by the vote counting method consistent with Chapter 12.2 of the Cochrane Handbook for Systematic Reviews of Interventions, and described in this review in the Methods section (McKenzie 2021).

Contributions of authors

TB led the searches and selection of studies based on the inclusion criteria. TB extracted data and entered data into Review Manager 5 (RevMan 2012). He also led in carrying out and interpretation of the analysis. TB also led in the writing up of the final review and is responsible for maintaining the review.

MT led the development and writing of the review protocol. She was involved in the screening and selection of studies based on the inclusion and exclusion criteria. She assisted in interpreting the analysis and writing of the review.

SR assisted with the screening process and provided advice, edits and writing of both the protocol and final review.

SS provided advice and guidance to both the protocol and final review. She contributed to the interpretation of the results and writing of both the protocol and final review.

MK (deceased author) provided advice and guidance for the review and assisted with the screening of the updated search results, risk of bias and quality of evidence assessments.

Sources of support

Internal sources

• Royal Children's Hospital Education Institute, Australia

  For the initial part of the review (2015‐16), Tony was employed as Head of Policy and Research by the Royal Children's Hospital Education Institute which received funding from the Victorian Government Department of Education and Early Childhood Development. He continued and completed the review after his employment at the Royal Children's Hospital Education Institute as a PhD candidate, Centre for Health Policy, School of Population and Global Health, The University of Melbourne, Australia.

• Royal Children's Hospital and University of Melbourne, Australia

  For the initial part of the review (2015‐16), Michelle was seconded from the Murdoch Children’s Research Institute and the Centre for Adolescent Health to the Royal Children’s Hospital Education Institute to undertake this review. The Royal Children’s Hospital Education Institute provides educational support to children and adolescents with chronic health conditions.

External sources

• Michelle Tollit, Australia

  For part of the review period, Michelle was seconded from the Murdoch Children’s Research Institute and the Centre for Adolescent Health to the Royal Children’s Hospital Education Institute to undertake this review. The Royal Children’s Hospital Education Institute provides educational support to children and adolescents with chronic health conditions.

Declarations of interest

Tony Barnett: Declares no conflict of interest

Michelle Tollit: Declares no conflict of interest

Savithiri Ratnapalan: Declares no conflict of interest

Susan Sawyer: Declares no conflict of interest

Margaret Kelaher: Author deceased; No known conflicts of interest previously declared.

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