oa Caring for a Child with Autism; Burden and Quality of Life of the Caregivers in Qatar

Introduction: Autism spectrum disorder (ASD) affects children at around the age of 3 years old and last throughout the person's lifetime. ASD imposes great burden on the family, and forces family members to considerably modify their daily lives to suit their reality with autistic child(ren). To our knowledge, no previous research assessed the burden of ASD on the lives of parents/caregivers of autistic children in Qatar or the Gulf region.

Methods: Caregivers of a child with autism between 3–17 years were recruited from children rehabilitation clinics. The control group was represented by caregivers of a typically-growing child visiting a primary health care facility for a routine medical examination. Data collected from both groups included demographic information of caregivers and children and quality of life information. The Lebanese Arabic version of the Short Form-36 (SF-36) was used to assess quality of life.

Results: Children in the AG spent more time indoors, watching TV, or sleeping than children in the control group (p←0.05). Around 40% of caregivers in the AG said they would encourage their child to get married and become parent when s/he grows up. Half of the sample in the AG utilizes special education classes and other facilities, and the remaining half has access problems. There was no statistically significant difference between quality of life domains between the two groups of caregivers, but caregivers of autistic children rated their health as poor and likely to get worse (p=0.003). However, mental health components were consistently poorer in the AG compared to the physical components, and female caregivers also had poorer mental health than males in this cohort of participants (p<0.05).

Conclusion: This study provided evidence for the impact of caring for a child with autism on the life of the caregiver. The findings should help health policy-makers provide more focused support to the children with autism and their families.