Concerns and considerations among caregivers of a child with autism in Qatar

Abstract

BackgroundAutism impacts the lives of the family looking after a child with the condition in different ways, and forces family members to modify their daily lives to suit their reality. To our knowledge, no previous research investigated concern and considerations of parents/caregivers of children with autism in Qatar or the Arabic speaking Middle Eastern region.MethodsCaregivers of a child who was between the age of 3 to17 years old at the time of the study and who was diagnosed with ASD (Autistic Group or AG) were recruited from the two main developmental pediatric and children rehabilitation clinics in Qatar. The control group (non-autism group, or NAG) was represented by caregivers of a non-autistic child between the age of 3 to 17 years old at the time of the study and who were visiting a family clinic of a primary health care facility for routine medical check-up. Data collected from both groups included related to the child (e.g. the child’s date of birth, his/her relation to the caregiver, number of siblings, number of hours of sleep in a day, number of hours spent watching television or videos prior to age 3, time spent indoors prior to age 3, absenteeism from school, and use of a nanny to care for the child) and to the caregiver (education level, profession, level of consanguinity using the phylogram method). In addition to these questions, caregivers in the AG were asked specific questions around maternal concern and considerations in respect to the future of their children and the specialized services they receive.ResultsChildren in the autism group spent more time indoors, watching television, or sleeping than children in the non-autism group. Only around 40% of caregivers in the autism group said they would encourage their child to get married and become a parent when s/he grows up. A number of caregivers of children with autism frequently utilize specialized rehabilitation services; others did express their needs for these services and made comments about having to wait a long time before they were provided with some of the services. Religious faith helped caregivers in accepting having a child with autism. General health-related quality of life did not differ significantly between the caregivers of the two groups, although mental health was consistently poorer in the autism group of caregivers.ConclusionsThe study draws attention to the concerns of the families of children with autism and their expectations about the future of their children. The findings can be used by policy makers in planning services to support these families in Qatar.

The experiences of families raising autistic children

“…Studies have concluded expenses of families for children with ASD are up to three times more than typically developed kids as well as mentally and physically disabled children at the same age. [ 25 ] For participants, treatment costs and lack of insurance support were the biggest financial challenges. Sharp argues in his study that even if insurance companies cover medical tests related to diagnosis, they never pay for therapies for behaviors.…”

Dilemmas of empowering families of children with autism spectrum disorders: a qualitative case study

“…In this regard, families, professionals and organizations are struggling with financial problems. In Iran, the value of the national currency has declined over the years for various reasons (Mosavi et al , 2018) and, like all Iranian families, it has affected families of children with autism even more severely, because according to studies in the Middle East, 70% of an employee's income is spent on the care of an autistic child (Kheir et al , 2012). As Weiss et al .…”

One size does not fit all: Pharmacists’ perspectives on disparities in quality care provided to adult patients on the Autism Spectrum Disorder

“…6 Therefore, we have been especially interested in the quality of life for individuals on ASD spectrum, and those caring for them. 7,8 A major component of the quality of life of any individual is having a healthy life and receiving quality care from all health care providers with no health disparities. Logically, the first step of this effective unbiased health care plan is appropriate communication, which is by definition, the form of a transfer and exchange of information that helps both sender and recipient get a better understanding of the other in order to meet that person's needs or wants.…”