Abstract

Chronic health conditions in children and young people can have a significant impact on their ability to maintain engagement in school, education, and learning. While this functional limitation affects only about 1.6% of all children and young people, the absolute number is not inconsequential. In Australia, for example, the number is in the order of 67,000 children and young people. Furthermore, research has shown that this group of young learners are at increased risk of lower academic, social, and emotional and quality of life outcomes than their healthy peers, both in the short and the longer term. For this reason, most pediatric hospitals in western developed countries have hospital-based schools that aim to prevent children and young people with a chronic health condition from disengaging from school, education, and learning. However, there is a lack of robust evidence of the effectiveness of these education support programs. This protocol for a feasibility study of the effectiveness of evaluating an education support program in Australia aims to identify a priori the methodological key features of a robust trial, including developing an answerable research question, choosing a controlled study design that compares the outcomes of both an intervention group and a well-matched non-intervention or control group, eligibility criteria, important and validated outcome measures such as quality of life, and how statistical data should be analyzed and reported. Lessons learned from the proposed feasibility study will be used to inform a larger-scale study.

Highlights

  • Pediatric chronic health conditions are defined as illnesses that have lasted, or are 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 (Australian Institute of Health and Welfare [AIHW], 2005; Martinez & Ercikan, 2009)

  • Students With Chronic Health Conditions. The rationale for these education support programs is that children and young people with chronic health conditions are at increased risk of disengagement from school, education, and learning, and, worse, academic, social, and emotional and quality of life outcomes both in the short and the longer term (Martinez & Ercikan, 2009; Maslow, Haydon, McRee, & Halpern, 2012; Nasuuna, Santoro, Kremer, & Silva, 2016)

  • While the common goal of education support programs is to prevent students with a chronic health condition from disengaging from school, education, and learning and to maintain continuity in their human development processes (Seymour, 2004), many different types of services or interventions exist for this group of students, shaped by their setting and context, and described differently (Dempsey, 2019)

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Summary

Method Study Design and Setting

Many researchers (e.g., Chalmers, 2005; Gray, 2001; Littell & Shlonsky, 2010; Shlonsky & Gibbs, 2004) consider the randomized controlled trial (RCT) the “gold standard” in effectiveness evaluations as it is viewed to be the best design for minimizing the influence of bias. This, in turn, allows stronger and more robust claims of causality and effectiveness of a given intervention; that is, that any differences in results between the two groups were due and can be attributed to the intervention (Chalmers, 2005; Shlonsky & Gibbs, 2004) One such design is that of a controlled cohort study, where both the intervention group and the control group exist “naturally” in the community. Such is the case in Victoria, Australia, where the Department of Education and Training (DET) funds education support programs at some, but not all, pediatric hospitals and departments. Do hospitalized children with a chronic health condition, who receive hospital-based education support as compared to those who receive no hospital-based education support, have higher levels of engagement in education and learning and quality of life?

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