Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study

Research output: Contribution to journalArticlepeer-review


  • Samantha Clarke
  • Gemma Griffith
  • Pat Howlin
  • Penny Tunnicliffe

Colleges, School and Institutes

External organisations

  • King's College London


It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.


Original languageEnglish
Pages (from-to)241-253
Number of pages13
JournalAmerican Journal on Intellectual and Developmental Disabilities
Issue number3
Publication statusPublished - 1 May 2018


  • intellectual disabilities , syndrome , challenging behaviour , mental health