Autism spectrum disorder (ASD) has become an urgent public health challenge worldwide. Nonetheless, there is serious paucity of information about societal economic burden on families caring for ASD children in the Arab world.
Objectives:
To investigate the societal economic burden on families caring for autistic children (ASD families) in Oman.
Methods:
A cross-sectional study was nested on on-going research project among families of ASD children who are registered at the Autism Database at SQU. Questionnaires, both in English and Arabic, were developed based on the standardized and validated Client Service Receipt Inventory (CSRI). Elements covered were: (1) Time spent in informal care; (2) Out-of-pocket expenses; and (3) Range of services used by ASD children. Families were interviewed by trained medical students.
Results:
Out of 150 ASD families surveyed, majority were considered low-income (69; 46%) or middle income (50; 33%). The average monthly income for the whole group was 2051 ± 218 US Dollars (USD). Total monthly out-of-pocket expenses spent per ASD child 215 ± 57 OMR (27.2% of total average income). The average time spent in informal care per month was 224 ± 23 hours. The estimated average income loss due to lost employment opportunity or quitting jobs by mothers was 1830 ± 109 USD. Ranges of services used by ASD children varied among families. Of total, 33 (22%) families reported sending their ASD children to private special schools, and 22 (15%) families needed to move to closer service. Hiring a housemaid to help in caring was reported by 71 (47%) families. Seeking treatment abroad was reported only among high-income families, and the average cost of which was 8780 ± 718 USD per year.
Conclusions:
The societal economic burden on ASD families is considerably high. Effective social services are urgently needed to improve quality of life of ASD families.
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