Inclusive education policy across Europe, and internationally, has increasingly emphasised participation, rights, and equity for learners experiencing disability, marginalisation, or vulnerability. However, children and adolescents treated for cancer remain largely invisible within inclusive education discourse and policy frameworks. Despite well-established evidence of long-term physical, cognitive, and psychosocial effects of cancer treatment, survivorship is rarely recognised as a legitimate basis for educational accommodation or support. This paper addresses this gap by examining parents’ experiences of their child's education during and post cancer treatment.

The paper is guided by the overarching research question: How do parents perceive and experience barriers to their child’s access to, participation in, and progression through education during and after cancer treatment? Subsidiary questions explore academic engagement, social belonging, physical participation, communication across systems, and the impact of schooling on the wider family, including siblings.

Theoretically, the paper is grounded in a social model of disability, situated within the broader field of inclusive education. Rather than locating difficulty within the child’s medical history or individual impairment, the analysis focuses on how education systems, policies, and practices create disabling conditions through inflexibility, categorisation, and poor inter-agency coordination. This is complemented by a rights-based framework, drawing on the UN Convention on the Rights of the Child and European commitments to inclusive education, which position access to education as a fundamental entitlement rather than a discretionary accommodation.

Universal Design for Learning (UDL) is used as a sensitising framework to interrogate how curricula, assessment, attendance norms, and support structures fail to anticipate fluctuating capacity, fatigue, cognitive processing differences, and trauma-related needs. From this perspective, childhood cancer survivorship exposes broader structural weaknesses within education systems that rely heavily on fixed categories of disability and deficit-oriented eligibility criteria.

The purpose of this paper is threefold. First, it seeks to centre parents as key knowledge holders whose lived experiences reveal how inclusive education is enacted—or undermined—in practice. Second, it aims to contribute to theorising inclusion by extending social models of disability to encompass chronic illness and survivorship, areas that remain underdeveloped in inclusive education research. Third, it aims to inform international debates on inclusive education policy by highlighting the consequences of failing to recognise non-visible, non-static forms of disability.

Although the empirical data are drawn from Ireland, the findings are explicitly situated within a European and international context, engaging with comparative research from across Europe, North America, and Australia. The paper argues that the barriers identified are not country-specific but are indicative of wider tensions between medicalised understandings of difference and inclusive, rights-based education systems. As such, the findings have relevance for researchers, policymakers, and practitioners concerned with disability, families, participation, and educational equity across Europe.

This paper draws on data from a qualitative-dominant mixed-methods study, with data collection completed . The study was designed to capture parents’ perspectives on schooling during and after their child's cancer treatment, recognising parents as primary advocates and mediators between health and education systems. Data sources included an online survey distributed nationally to parents and guardians of children treated for cancer and in-depth semi-structured focus groups. The survey collected descriptive quantitative data alongside open-ended responses relating to academic participation, social inclusion, physical access, communication with schools and hospitals, and access to supports. The focus groups constitute the primary qualitative dataset analysed in this paper. Discussions were structured around core research questions addressing academic, social–emotional, physical, and systemic dimensions of education. A constructivist grounded theory approach was employed to analyse the data, allowing themes to emerge inductively while remaining theoretically informed by social models of disability and inclusive education scholarship. Analysis involved iterative coding, constant comparison, and memo-writing to explore relationships between themes. Parents’ accounts highlighted how barriers were produced through institutional practices such as rigid attendance policies, categorical eligibility systems for support, lack of recognition of cognitive late effects, and an over-reliance on parental advocacy. Particular attention was paid to how these barriers shifted over time and across educational transitions. To strengthen the European and international relevance of the analysis, findings were examined in dialogue with international literature on childhood cancer survivorship and education, and with similar studies carried out in Maryland, USA. This comparative engagement allowed identification of shared structural issues across education systems, including inadequate communication between health and education sectors and limited recognition of survivorship within inclusive education policy. Ethical approval was obtained from Maynooth University, and care was taken to ensure informed consent, confidentiality, and sensitivity to trauma. The methodological approach aligns with inclusive research principles by prioritising voice, participation, and the experiential knowledge of families.

The findings demonstrate that children and adolescents treated for cancer encounter systemic and persistent barriers to inclusive education that extend well beyond treatment completion. Parents consistently described education systems that were ill-equipped to recognise fluctuating needs, invisible impairments, and the long-term effects of treatment. Rather than being supported through coherent inclusive frameworks, families were required to rely on personal advocacy, professional knowledge, and financial resources to secure participation for their children. A central conclusion is that the absence of survivorship within inclusive education policy effectively disables children, not through impairment, but through institutional inaction. The reliance on categorical models of disability excludes many childhood cancer survivors from timely and appropriate supports, undermining their rights to participation and equity. The findings also reveal how inclusive education failures affect families as a whole. Parents experienced significant emotional exhaustion, while siblings’ educational experiences were often disrupted. These dynamics highlight the importance of understanding inclusion not only at the level of the individual learner, but within family–school relationships. From a European and international perspective, the study reinforces international evidence that better coordination between education and health systems is essential. The paper argues that adopting social models of disability and UDL-informed approaches can support education systems to respond more equitably to chronic illness and survivorship, without requiring medicalised labelling. The paper concludes by calling for policy recognition of childhood cancer survivorship within inclusive education frameworks and for greater engagement with families as partners in inclusion. These findings contribute to inclusive education scholarship by extending debates on disability, rights, and participation to a population that remains largely marginalised within the field.

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