Securing educational support for children with rare genetic conditions: Mothers' experiences and impacts on the family

O'Donovan, Lowri, Burn, Anne‐Marie, Ford, Tamsin and van den Bree, Marianne ORCID: https://orcid.org/0000-0002-4426-3254 2026. Securing educational support for children with rare genetic conditions: Mothers' experiences and impacts on the family. Journal of Intellectual Disability Research 70 (10) , pp. 1063-1076. 10.1111/jir.70141

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Abstract

Background: Children with rare genetic conditions are more likely to experience neurodevelopmental challenges requiring additional educational support. Although the governments in the United Kingdom and Ireland are committed to providing such support, securing it can be challenging for parents, with potential adverse implications for their mental health. Children who do not receive the educational support they need are at greater risk of poorer educational outcomes. This study aimed to remedy the lack of empirical data about the experiences of parents of children with rare genetic conditions in obtaining educational support and how these experiences affect them and their families. Method: Sixteen mothers were interviewed about their experiences of securing educational support for their child(ren) with a rare genetic condition. Qualitative data were collected during the Covid-19 pandemic. Participants reflected on experiences both prior to and during this period. Data were analysed using Framework Analysis. Results: Five main themes were identified: (1) fighting for access into ‘the system’, (2) a lengthy process to secure support, (3) factors enabling access, (4) challenges after securing support and (5) impact of experience on mothers. Conclusions: Accessing educational support was challenging, lengthy and stressful, with negative effects on mothers' mental health and relationships with wider family members. Parents of children with rare genetic conditions may face additional challenges securing support.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Schools > Medicine Research Institutes & Centres > Neuroscience and Mental Health Research Institute (NMHII)
Publisher:	Wiley
ISSN:	0964-2633
Date of First Compliant Deposit:	14 July 2026
Date of Acceptance:	15 June 2026
Last Modified:	07 Oct 2026 13:33
URI:	https://orca.cardiff.ac.uk/id/eprint/188195

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