Caring for An Autistic Child: Quality of Life of Caregivers In the State of Qatar

Background:   Autism spectrum disorder (ASD) affects children at around the age of 3 years old and last throughout the person’s lifetime. Children with autism poses clear psychological burden on their parents and caregivers; factor such as functional independence, severe maladaptive behaviours and severity of autism were strongly linked to maternal caregiving burden and adverse quality of life (QOL). In addition, physical health issues which are recently becoming more recognized and the extra hours spent looking after such children can also contribute to parental burden. To our knowledge, no previous research assessed QoL of parents/caregivers of autistic children in Qatar or the Gulf region. There is undoubtedly need to investigate how caring for a child with ASD affects the lives of the parents/caregivers and to develop comprehensive health care strategies that not only target the patient, but also cares for and supports those who are in direct daily contact with their child(ren).

Objectives:  Our study aimed at quantifying the health-related QoL of caregivers of children with ASD in Qatar.

Methods:  Caregivers of an autistic child between the age of 3 to17 years old were recruited from the two main developmental pediatric rehabilitation clinics in the country. The control group was represented by caregivers of a non-autistic child and who were visiting a family clinic for routine medical check-up. Data collected from both groups included demographic information of caregivers and children and QoL information. The Arabic version of the Short Form-36 (SF-36) was used to assess QoL.

Results: Most of the quality of life domains of caregivers of autistic children reflected poorer health compared to caregivers of healthy children, albeit the differences were not reaching statistical significance in most of the domains compared. However, caregivers of autistic children rated their health as poor and likely to get worse (p=0.003).  The four domains that contribute the most to the Mental Component Summary (MCS) were consistently poor, and female caregivers had poorer mental health than males in this cohort of participants (p<0.05). These results suggest that caring for an autistic child does impact on the psychosocial aspect of the caregiver’s or parent’s life.

Conclusions:  This study provided evidence for the impact of caring for an autistic child on the life of the caregiver and the findings should help health policy-makers provide more focused supports to the children with ASD and their families. However, the lack of statistically significant differences between the QOL domains of the control group and the caregiver of autistic children’s group in most of the QOL domains measured could be due to the use of a generic, rather than a condition-specific, QOL instrument. Further work should focus on developing and validating an instrument specific for measuring QOL of caregivers and parents of children with ASD.