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

Am J Intellect Dev Disabil. 2018 May;123(3):241-253. doi: 10.1352/1944-7558-123.3.241.

Abstract

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.

Keywords: challenging behavior; intellectual disabilities; mental health; syndrome.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Adolescent
  • Adult
  • Angelman Syndrome* / physiopathology
  • Angelman Syndrome* / psychology
  • Anxiety / psychology*
  • Case-Control Studies
  • Child
  • Cri-du-Chat Syndrome* / physiopathology
  • Cri-du-Chat Syndrome* / psychology
  • Cross-Sectional Studies
  • De Lange Syndrome* / physiopathology
  • De Lange Syndrome* / psychology
  • Depression / psychology*
  • Female
  • Humans
  • Longitudinal Studies
  • Male
  • Mental Health*
  • Middle Aged
  • Mothers / psychology*
  • Problem Behavior* / psychology
  • Rare Diseases
  • Stress, Psychological / psychology*
  • Young Adult