ArticleJournal of intellectual disability research : JIDR2026
Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family.
Article in Journal of intellectual disability research : JIDR, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
1 citing paper in PubMed.
- Family functioning and psychiatric outcomes in children and young people with intellectual and developmental disabilities caused by rare genetic mutations.medRxiv : the preprint server for health sciences · 2026Article
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Authors and funding
4 authors.
Funding
Abstract
backgroundChildren 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.
methodSixteen 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.
resultsFive 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.
conclusionsAccessing 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.
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Registered trials
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