Reintegration Into School After Treatment for a Brain Tumor: The Child’s Perspective

Vanclooster, Stephanie; Bilsen, Johan; Peremans, Lieve; Bosch, Jutte van der Werff ten; Laureys, Geneviève; Paquier, Philippe; Jansen, Anna

doi:10.1177/2333794x19860659

Cited by 7 publications

(28 citation statements)

References 46 publications

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“…56 Special treatment-even when very much needed, such as assistance with schoolwork and class participation-often made them feel abnormal when delivered in front of peers. 29,51,53 Some children and adolescents-predominantly survivorsreported downplaying their problems and trying not to attract attention from classmates and school staff to appear more like their friends and peers. 18,29 They also found it frustrating and upsetting to not be able to do activities they considered normal, such as driving and playing sport.…”

Section: A Constant Cloud Of Uncertaintymentioning

confidence: 99%

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

2021

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Objectives: Brain tumors are the most common and fatal of all solid tumors for children and adolescents; those who survive live with long-term physical and emotional consequences, as do their families. We aimed to synthesize relevant qualitative evidence on families' experiences and psychosocial service needs across the lifespan to identify gaps in care delivery and research.Methods: Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science. Identified papers were assessed with the Joanna Briggs Institute Critical Appraisal Tool. Data were extracted into NVivo12 and analyzed by qualitative description and, where appropriate, thematic analysis. Results:The search yielded 628 papers, of which 40 (33 studies) were eligible (6%).Although the methodological quality of the papers was low, we identified concerns that were consistently reported over time and from different perspectives. Individual family members had varying psychosocial needs to be addressed within healthcare, schooling, and public policy. These include for survivor's mental health (particularly for body image), and to the disproportionate biopsychosocial burden faced by mother-caregivers. Conclusions:Addressing the biological aspects of brain tumor cannot be our only focus. We have an obligation to provide services that meet the needs of families across diagnosis, treatment, survivorship, palliative care, and bereavement.

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Section: A Constant Cloud Of Uncertaintymentioning

confidence: 99%

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

2021

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“…I don't think you will improve if you don't do anything about it. (Stephanie Vanclooster et al, 2019) Importance of encouragement Conversely, not improving despite working hard was disheartening for children and adolescents (Cheung et al, 2019;Vance et al, 2004;Vanclooster et al, 2019b;Vanclooster, Bilsen, et al, 2019): I feel a significant decline in my learning capability, I always get poor results from the tests and examinations, which make me feel very disappointed and distressed (Cheung et al, 2019). In Boydell et al (2008), adolescents identified a need for extra encouragement and recognition of their work: I think I could have used more of that (encouragement).…”

Section: Successes and Failuresmentioning

confidence: 99%

“…And that was really hard. (Bruce et al, 2008) Parents and diagnosed children often pre-empted bullying and worried about it worsening in the future (Vance et al, 2004;Vanclooster, Bilsen, et al, 2019;Zwiers, Campbell, Evans, & Kirkwood, 2015):…”

Section: Devastation Of Bullyingmentioning

confidence: 99%

“…Conversely, some children and parents reported their classmates as being supportive (Bruce et al, 2008;Shortman et al, 2013;Vance et al, 2004;Vanclooster et al, 2019a). Parents in Vanclooster, Bilsen, et al (2019), for example, reported classmates of younger children as regularly giving their child compliments about their successes and helping them with tasks like cleaning their desks, and in Bruce et al (2008), that friends and siblings helped with schoolwork and provided encouragement:…”

Section: Devastation Of Bullyingmentioning

confidence: 99%

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I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

Young

Bowers

Prain³

et al. 2021

Brit J of Edu Psychol

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Background Brain tumours are the most common and fatal of all solid tumours for children and adolescents. The effects of the tumour and treatment (chemotherapy, radiation, and/or surgery) results in significant disruptions to childhood development and large amounts of missed schooling. Among other challenges for families, this produces obstacles for children and adolescents to achieve and maintain academic performance and experience positive schooling encounters. Aims We thus aimed to systematically identify and synthesize qualitative evidence on how families experience paediatric brain tumour from diagnosis and beyond with regards to their schooling and education to identify gaps in service delivery, research, and policy. Methods A protocol for this review was registered with PROSPERO (ID: CRD42020177165). Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science, and yielded 22 eligible papers (representing 17 studies). Data were extracted into NVivo12 and analysed by qualitative description. Results We formed the following domain summaries: academic (perceived failure to keep up with peers and finding success where one could, the importance of encouragement for diagnosed children), social (the importance of friendships and the harm of bullying), and support (the defining factor in overall return‐to‐school experience, often not enough received from educational professionals and clinicians). Our review highlights the need for more comprehensive, individualized, and integrated support for diagnosed children to return to educational institutions, and for the need to address their social experiences, particularly with regards to bullying, potentially through a school‐wide social and emotional learning approach. Conclusion Funding support, evidence‐based guidelines, staff skill development, and clear communication structures across families, health care facilities, schools, and educational departments are essential to achieving this.

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“…Children’s own experiences appear to have received insufficient investigation given the extensive concerns related to educational attainment. Retrospective reporting [ 20 ] and small sample sizes [ 21 ] are further issues that challenge the drawing together of robust recommendations from individual studies. Children’s own perceptions seem to have a strong focus on the social aspects of school life [ 22 ]; these can form both the positive aspects of school and some of the more challenging aspects as reported by children and adolescents themselves [ 23 ].…”

Section: Introductionmentioning

confidence: 99%

Access to and experience of education for children and adolescents with cancer: a scoping review protocol

et al. 2021

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Background Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. Methods We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O’Malley’s six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. Discussion This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects. Systematic review registration Open Science Framework (osf/io/yc4wt)

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Reintegration Into School After Treatment for a Brain Tumor: The Child’s Perspective

Cited by 7 publications

References 46 publications

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

Access to and experience of education for children and adolescents with cancer: a scoping review protocol

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