Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder

Abstract

Purpose: To investigate psychological distress among parents of children with autism spectrum disorder and the associated sociodemographic factors influencing parents' distress.

Design and methods: A cross-sectional design with a sample of 123 Jordanian parents providing care to children with autism spectrum disorder was used. A sociodemographic questionnaire, the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the Hospital Anxiety and Depression Scale were utilized for data collection.

Findings: Parents reported moderate levels of burden, negative life changes, and borderline depression and anxiety. The perceived burden related to caregiving task difficulty positively correlated with that related to time spent on tasks and negatively correlated with caregivers' caregiving-related outcomes. The perceived burden of caregiving tasks was negatively correlated with depression and anxiety and anxiety levels were positively correlated with depression (P < 0.001).

Practice implication: Healthcare providers, advanced practice nurses, and policy makers should be aware of the burden, anxiety, and depression experienced by caregivers of children with autism spectrum disorder.

Keywords: anxiety and depression; autism spectrum disorder; caregiving outcome; parental burden; psychological distress.