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

Abstract

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.

Factors and experiences that influence school mobility for autistic students: A systematic review

“…The similarity in subthemes included issues around programming and educational outcomes, responses to behaviour, bullying and mental health, and family stress. This suggests that such issues may be pervasive across disability groups and has been noted in other studies on the school experience of students with disabilities (Kluth et al, 2007;Young et al, 2021). Many of these same factors were also identified in this current review as reasons leading to leaving the mainstream to attend a segregated setting or another mainstream school.…”

Life after paediatric brain tumour; the perspectives of the survivors and their parents

“…Communication between families, health care services and schools to support families in reintegrating survivors into school after treatment is important. Nurses are well‐positioned to facilitate such communication (Young et al, 2022). Many adult PBT survivors talked about depending on others to help them manage their daily activities due to late effects.…”

Supporting families through paediatric brain tumour: Unmet needs and suggestions for change

“…developed, informed by our review, 6,7 the study aims, and participants' responses in prior surveys and/or interviews within the larger study. Participants were also encouraged to discuss anything relevant to their experience beyond this guide.…”

“…A recent qualitative review suggests each family member has varying unmet needs (see Young et al 6 . and Young et al 7 …”

“…Few scholarly studies have considered the psychosocial experiences and associated health service needs of families who have a child diagnosed with a brain tumour. A recent qualitative review suggests each family member has varying unmet needs (see Young et al 6 and Young et al 7 ). Mothers, for example, report shouldering the burden of a lack of healthcare, policy, and social support in the often lifelong complex care required for their child, while adolescents and adult survivors emphasised a lack of care to address their mental health, particularly around body image.…”