Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta‐review

Lum, Alistair; Wakefield, Claire E.; Donnan, Barb; Burns, Mary; Fardell, Joanna E.; Marshall, Glenn M.

doi:10.1111/cch.12475

Cited by 140 publications

(120 citation statements)

References 97 publications

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“…Over recent decades, the number of children living with a chronic illness has increased significantly with an estimated 12% of young people aged 10–19 years having a long‐term health condition (DH, ; Leeman et al, ). However, they may experience poorer psychosocial and educational outcomes when compared with their healthy peers (Champaloux & Young, ; Lum et al, ; Nylander, Seidel, & Tindberg, ). Research exploring young peoples' experiences of living with different conditions has uncovered consistent themes.…”

Section: Introductionmentioning

confidence: 99%

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Kirk

Hinton

2019

Child

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Background: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.Aims: To explore how young people experience an MS diagnosis.Methods: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.Results: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.

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Section: Introductionmentioning

confidence: 99%

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Kirk

Hinton

2019

Child

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“…School is an area of particular concern when evaluating disease/treatment-related risks and implications for pediatric patients, as evidence indicates that these youth experience suboptimal educational outcomes compared with healthy peers. [5][6][7] Despite the well-established need for educational interventions for students with a chronic illness [8][9][10] , prior to now, a tool did not exist to stratify risk and educational interventions in education based on the presence of an illness. The existing assessments in other psychosocial disciplines are limited in their ability to predict risk in education, as education is not the primary focus of those instruments.…”

Section: Introductionmentioning

confidence: 99%

Validity, reliability, and feasibility of the Brief School Needs Inventory: Evaluating educational risk for students with chronic health conditions

2019

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Objective Researchers have increasingly emphasized the need to include routine educational and cognitive screening in the care plan for youth with chronic health conditions. Prior to now, a screener did not exist to asses risk/need in education in the pediatric setting; thus, this research aimed to examine the validity, reliability, and feasibility of the newly developed Brief School Needs Inventory (BSNI), which stratifies a patients level of educational risk/need in the context of a health condition. Methods The authors developed and pilot‐tested two versions of an education risk screener utilizing a mixed‐methods design, which included an expert panel review process and assessments for validity, reliability, and feasibility. Results Ninety‐eight school‐age survivors of an oncologic disease were assessed for educational risk. Participants were assigned to two groups and administered either the initial (n = 48) or revised (n = 50) version of the screener. The final version of the screener, the BSNI, predicted educational risk in congruence with school liaisons perceived risk assessment with 94% accuracy. Liaisons also reported confidence in the results of 98% of cases for the BSNI. Similarly, expert panel results for the BSNI indicated a high degree of interrater agreement and content validity. Conclusions The BSNI was found to be a valid and reliable screener for predicting educational risk for youth with oncologic conditions; future studies will examine use of the screener within other pediatric chronic populations.

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“…In a recent systematic meta‐review, Lum and colleagues critiqued the available evidence examining the link between six chronic illnesses and children's and adolescents' school experiences and outcomes. They found that students with chronic illnesses, while demonstrating mixed results, often had worse school experiences and outcomes as compared with students without chronic illnesses (Lum et al, ). They suggest that, “An improved understanding of the factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support.” In this paper, we aim to review, critique, and build on what is empirically known about such risk and protective factors.…”

Section: Introductionmentioning

confidence: 99%

“…and outcomes as compared with students without chronic illnesses (Lum et al, 2017). They suggest that, "An improved understanding of the factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support."…”

mentioning

confidence: 99%

Predictors of learning outcomes for children with and without chronic illness: An Australian longitudinal study

Barnett

Giallo

Kelaher

et al. 2018

Child

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A child's approach to learning and a consistent parenting style during the period of the child's transition to elementary school are important and potentially modifiable factors that are predictive of academic performance in later childhood. These factors are particularly relevant for children with a chronic illness, their parents/caregivers, teachers both hospital and school based, and pediatricians and can be used to inform interventions.

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Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta‐review

Cited by 140 publications

References 97 publications

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Validity, reliability, and feasibility of the Brief School Needs Inventory: Evaluating educational risk for students with chronic health conditions

Predictors of learning outcomes for children with and without chronic illness: An Australian longitudinal study

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