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We searched health, education and social science databases, as well as other registries to find published and unpublished studies.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.
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.
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.
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.
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.
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).
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.
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.