A national average of 1,645 cancer cases among 0-to-14-year-old children and 2,110 cases among 15-to-24-year-old teenagers and young adults are reported annually in the United Kingdom, with a promising increment in survival rates over the past two decades (Irvine, 2021). Still, many late and long-term effects of childhood cancer and its treatment significantly reduce a child’s quality of life. Although some effects are well documented, others, such as the impact of childhood cancer on academic success, challenges faced upon returning to school and educational support, are under-researched, especially within the UK (Iyamu et al., 2021).

A child’s cancer diagnosis causes a deep and complex crisis for the entire family, affecting every aspect of their life, including the child’s schooling (CLIC Sargent, 2012). Parents, being their children’s voice – especially in early childhood – can provide a unique and complete perspective that encompasses all aspects of their child’s life (Castro-Kemp & Mahmud, 2021).

‘A child’s cancer diagnosis causes a deep and complex crisis for the entire family, affecting every aspect of their life, including the child’s schooling.’

This blog post is based on a preliminary investigation of the experiences of parents/guardians in the UK when their child (up to and including the age of 16) returned to school following a cancer diagnosis and treatment. This was designed as a small pilot study consisting of a survey with two responses so far.

Initial findings

The preliminary opinions and experiences of parents suggest the following:

• Cancer diagnosis and treatment resulted in one or more than one year absence from school and affected contact with school friends.
• Support needs considered and implemented following the return to school included: Education, Health and Care Plan (EHCP), reduced hours, a phased return and teacher home visits.
• Recognised good practices in schools included: communication between the medical professionals, school and parents, supportive teachers, information about illnesses discussed in class (relating to infection prevention), and authorisation for a parent to accompany their child on school trips to reduce health risks.
• Indicated areas for improvement included: adjustments to compensate for missed school time, improved awareness of learning difficulties, and timely support of knowledge gaps due to absence (for instance, missed gaps of phonics knowledge in early years leading to reading difficulties later).

Suggestions for development

Our preliminary findings partially correspond with the CLIC Sargent study conducted in 2012, which focused on primary school-age children in the UK. Most parents similarly felt well informed and consulted about their child’s educational journey following a cancer diagnosis. However, 44% did not think that school support was sufficient and timely for smooth reintegration, and 47% felt a lack of school assistance in helping to maintain contact with school friends (CLIC Sargent, 2012). After more than a decade, similar preliminary findings highlight that the same improvement areas remain to be addressed. Potential explanations for these findings were covered in a special educational needs and/or disabilities (SEND) government report, which suggested that schools might struggle to provide necessary individualised and timely support due to numerous reasons, such as limited funding; staff shortages; gaps in training and awareness; delays in assessments and approval; local authority differences; inefficient collaboration; and under-resourced mental health services addressing emotional needs (Ofsted, 2021).

Considering this and our preliminary findings, key suggestions that could make a positive difference in achieving the full educational potential of children returning to school after a cancer diagnosis and treatment, while also supporting their parents and teachers include:

• teacher training relating to the educational impact of a childhood cancer diagnosis and treatment
• policy/legislative adaptation to ensure timely support is consistent across schools
• funding increases to support staffing and mental health services in schools
• raised awareness about learning difficulties after a childhood cancer diagnosis.

Further in-depth research within these areas would support the dissemination of good practices and identify necessary improvements, all while raising awareness of the educational impact of a childhood cancer diagnosis.

References

Castro-Kemp, S., & Mahmud, A. (2021). School closures and returning to school: Views of parents of children with disabilities in England during the Covid-19 pandemic. Frontiers in Education, 6. https://doi.org/10.3389/feduc.2021.666574

CLIC Sargent (2012, December 1). No child with cancer left out. https://www.younglivesvscancer.org.uk/wp-content/uploads/2018/08/No-child-with-cancer-left-out-report.pdf

Office for Standards in Education [Ofsted]. (2021). Supporting SEND. https://www.gov.uk/government/publications/supporting-send/supporting-send

Irvine, L. (2021, March 15). Cancer in children and young people: What do the statistics tell us? UK Health Security Agency blog. https://ukhsa.blog.gov.uk/2021/03/15/cancer-in-children-and-young-people-what-do-the-statistics-tell-us/

Iyamu, J., Hodgson, J. C., & Sharpe, R. (2021). A narrative review of the late effects of paediatric cancer treatment within an educational setting: Existing evidence and where do we go from here? Chronic Illness, 18(3). https://doi.org/10.1177/17423953211043113