School and educational support programmes for paediatric oncology patients and survivors: A systematic review of evidence and recommendations for future research and practice

Abstract

Objectives The Psychosocial Standards of Care (PSSC) in paediatric oncology prescribe the minimum standards for education support. It is unknown, however, if published education support programmes for children with cancer meet the PSSC standards for education support. Successful implementation of standards for education support is challenging but may be achieved with guidance. We aimed to (1) review education support programmes for childhood cancer patients and survivors against the PSSC standards and (2) provide practical recommendations for future research and implementation of education support programmes. Methods We searched PsycINFO, PubMed, CINAHL, EMBASE, and Educational Resources Information and Center databases. We reviewed the education support programmes using five evaluation criteria derived from the PSSC and summarised the structure of identified programmes. We examined the features and limitations of programmes that met all evaluation criteria. Results We identified 20 education support programmes in paediatric oncology, including peer programmes (n = 3), teacher programmes (n = 5), and school re‐entry programmes (SRPs n = 12). We found that three SRPs met all evaluation criteria and that SRP components were timed according to the child's position on the cancer trajectory (e.g., diagnosis and treatment, school re‐entry, and follow up throughout schooling). The supporting evidence of the programmes, however, is unclear due to the lack of adequately designed studies. Conclusions SRPs provide a promising structure for future education support programmes. We recommend strategies for developing and evaluating education support that adheres to the PSSC and adapts to international and local contexts.

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

“…Further, hospital‐to‐school communication is reported as lacking, as is training and support for teachers, and opportunities for quality home‐based learning. This is likely consistent with the international picture, given the poor level of educational attainment for childhood cancer survivors in several high income countries (Saatci et al., 2020) and lack of evidence‐based school support programmes for childhood cancer patients and survivors (Burns et al., 2021). This lack of support inhibits the social and economic participation of not only the diagnosed child but also those who provide the necessary caregiving – the bulk of which is shouldered by mothers – to compensate for its absence (Authors, 2021; Norberg, 2007).…”

“…In Australia, for example, of 80 families surveyed in one state health district, 62% reported their child faced additional educational difficulties (e.g., attention, mobility, hearing) but only 9% reported receiving funding support upon return to school (Donnan et al., 2015). There are few established school re‐entry support programmes for those living with childhood cancer and little associated evidence of their effectiveness (Burns et al., 2021). Health care to address late effects broadly is also lacking: a recent international review across 18 countries reported once childhood cancer survivors transition to adulthood, few are supported by a health care provider versed in the late effects of cancer and its treatment (Tonorezos et al., 2018).…”

Integrative review of school integration support following pediatric cancer

“…Unfortunately, SLPs are typically non-reimbursable by medical insurance in the USA and therefore not widely available to parents [ 46 ]. Additionally, although these programs are perceived as helpful, future work is needed to establish the effectiveness in optimizing child academic and psychosocial outcomes [ 63 ], which in turn may help to create policies that make these programs more widely available to families.…”

‘They could not see our eyes, they cannot see our faces, they do not know who we are and that is hard’: a qualitative interview study with staff caring for children and families in a UK specialist children’s hospital during the COVID-19 pandemic

“…Although provision of play, school and therapy services online mitigated the impact of highly restricted face-to-face delivery of this critical provision, enabling children in hospital to continue developmental activities, a preference for returning to face-to-face interactions dominated. Alongside this is important learning about the potential benefits of virtual delivery to expand children’s access to play, school, therapies and interactions with family and friends in specific circumstances where their illness circumstances may be a barrier to in-person interactions 31…”