Families under pressure: stress and quality of life in parents of children with an intellectual disability

Abstract

Objective: To evaluate stress and quality of life in parents of children with an intellectual disability (moderate-severe-profound), who attend a Child and Adolescent Mental Health Intellectual Disability Service (CAMHS ID), and to estimate the perceived levels of challenging behaviour and satisfaction with supports.

Methods: Data from children attending the service from 2014 to 2017, along with clinician and parent rating scales were collected.

Results: Most children had medical comorbidities, autism spectrum disorder (ASD), and challenging behaviours. Half had a diagnosis of a mental health disorder. Less than half received respite care. Challenging behaviours and ASD were found to be correlated with increased parental stress while perception of support was inversely correlated with stress. Intellectual disability, ASD, and parental stress were correlated with a decrease in perceived family quality of life.

Conclusions: This study concurs with previous studies, outlining that parents of children with intellectual disability, in particular, where there is a diagnosis of comorbid ASD and challenging behaviour, experience increased psychological distress and lower quality of life.

Keywords: Autism spectrum disorder; family quality of life; intellectual disability; stress; support.