Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the

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A Novel Strategy Combining Array-CGH, Whole-exome Sequencing and In Utero Electroporation in Rodents to Identify Causative Genes for Brain Malformations

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Lowri O'Donovan1, Anne-Marie Burn2, Tamsin Ford2

  • 1Centre for Neuropsychiatric Genetics and Genomics & Neuroscience and Mental Health Innovation Institute, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK.

Journal of Intellectual Disability Research : JIDR
|July 8, 2026
PubMed

Insights

Parents of children with rare genetic conditions face significant challenges securing educational support, impacting their mental health and family dynamics. This process is often lengthy and stressful, highlighting a critical need for improved systems.

Area of Science:

  • Pediatric Health
  • Genetics
  • Educational Psychology

Background:

  • Children with rare genetic conditions frequently experience neurodevelopmental challenges.
  • Educational support is crucial for these children but often difficult for parents to obtain.
  • Lack of support can lead to poorer educational outcomes and negatively impact parental mental health.

Purpose of the Study:

  • To investigate the experiences of parents seeking educational support for children with rare genetic conditions.
  • To understand the impact of this process on parents and their families.

Main Methods:

  • Qualitative study involving interviews with sixteen mothers.
  • Data collected during the COVID-19 pandemic, reflecting on experiences before and during.
  • Framework Analysis used for data analysis.

Main Results:

  • Parents encountered significant difficulties accessing the educational support system.
  • The process of securing support was prolonged and arduous.
  • Mothers reported negative impacts on their mental health and family relationships.

Conclusions:

  • Securing educational support for children with rare genetic conditions is a challenging, lengthy, and stressful process.
  • Mothers' mental health and family relationships were negatively affected.
  • Parents navigating these challenges require additional support and systemic improvements.
Abstract

Keywords:
SENeducational supportqualitativerare conditions

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