Childhood intellectual disability and parents' mental health: integrating social, psychological and genetic influences

Research output: Contribution to journalArticlepeer-review


  • Kate Baker
  • R.T. Devine
  • Ng-Cordell Elise
  • F Raymond
  • Claire Hughes

Colleges, School and Institutes

External organisations

  • MRC
  • University of Cambridge


Background: Intellectual disability (ID) has a complex effect on the wellbeing of affected individuals and their families. Previous research has identified multiple risk and protective factors for parental mental health, including socioeconomic circumstances and child behaviour. This study explored whether genetic cause of childhood ID contributes to parental wellbeing.

Methods: Children from across the UK with ID due to diverse genetic causes were recruited to the IMAGINEID study. Primary carers completed the DAWBA online, including a measure of parental distress (Emotions and Feelings Questionnaire). Genetic diagnoses were broadly categorised into aneuploidy, chromosomal rearrangements, copy number variants (CNVs) and single nucleotide variants (SNVs).

Results: Compared with the UK general population, IMAGINE-ID parents (n=888) reported significantly elevated emotional distress (Cohen’s d = 0.546). Within-sample variation was related to recent life events and the perceived impact of children’s difficulties. Impact was predicted by child age, physical disability, autistic characteristics and other behavioural difficulties. Genetic diagnosis also predicted impact, indirectly influencing parental well-being. Specifically, CNVs were associated with higher impact, not explained by CNV inheritance, neighbourhood deprivation, or family structure.

Conclusions: The mental health of parents caring for a child with ID is influenced by child and family factors, converging on parental appraisal of impact. We found that genetic aetiologies, broadly categorised, also influence impact and thereby family risks. Recognition of these risk factors could improve access to support for parents, reduce their long-term mental health needs, and improve well-being of individuals with ID.


Original languageEnglish
Pages (from-to)1-8
Number of pages8
JournalBritish Journal of Psychiatry
Early online date11 Mar 2020
Publication statusE-pub ahead of print - 11 Mar 2020


  • Intellectual disability, genetics, carers, depressive disorders, risk assessment