The possible relation between stigma, parent psychiatric symptoms, quality of life and the disease burden in families of children with autism spectrum disorder in Egypt: a multicentre study

Abstract

Abstract Background Most autism spectrum disorder (ASD) interventions evaluated child outcomes and ignoring the role of parent and family factors on both the immediate- and long-term effects of therapy. The purpose of this study was to determine the relationship between stigma, parent mental health problems, and quality of life and burden in families of children with ASD in Egypt and its risk factors. Seventy parents of ASD children were recruited from two child intervention centers. Participants were divided into two groups based on burden scale: caregivers of moderate burden (n = 27) and caregivers of severe burden (n = 43). All parents were evaluated for demographic data, zarit Burden Interview, socioeconomic scale, symptom checklist–90 (SCL90), Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS), and the World Health Organization Quality of Life–BREF (WHOQOL-BREF). Results Half of the parents reported significant stigma, particularly caregivers with a severe burden. Caregivers with severe burden had more depression and about twice the frequency of sensitivity and somatization problems, lower QoL (20%) as compared with caregivers with moderate burden. Parents with ASD had many associate factors such as work, male autistic children and their caregiver, age of children and parents, the severity of the condition, and disease duration with burden, stigma, QoL, and mental health problems. Conclusions This study linked the interrelationships between increased burden and stigma, impaired quality of life, and parental mental health problems; the presence of one of these variables was found to increase the risk of other variables.

Keywords

• Autism
• Associated stigma
• Burden problems
• Quality of life
• Psychological problems
• Parent