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CARING FOR A CHILD WITH AUTISM:

BURDEN AND QUALITY OF LIFE OF THE CAREGIVERS IN QATAR

Nadir

1, Ola Kheir

1, Ghoneim

Amy

2, Muna Sandridge

1, Al-Ismail

Sara

1, Hayder

Fadhila

3 Al-Rawi

1College

of Pharmacy, Qatar University, 2 Shafallah Medical Genetics Centre, 3Hamad Medical Corporation

Background

Autism Spectrum Disorder (ASD) is significantly on the rise worldwide from 1/10000 in the early 90's to 1/150 in 2009 as estimated by the National Survey of Children's health1 ASD is characterized by three main domains: social skills dysfunction, language and communication impairment, and repetitive behaviors2 ASD imposes great burden on the family, and forces family members to modify their daily lives to suit their reality with a child with autism There is a need to investigate how caring for a child with autism affects the lives of the caregivers to help in developing health care strategies that target the children and those who are in direct daily contact with them To our knowledge, no previous studies assessed the burden and QoL of parents/caregivers of children with autism in Qatar or the Gulf region

Table 1. Information Collected From The Two Groups Children related information Caregivers related Information · Date of birth · Schooling level · Relation to the caregiver · Profession · Number of siblings · Consanguinity · Hours of sleep in a day · Time spent watching TV in a day · Time spent at home in a day Additional information gathered from AG · Whether the caregiver will encourage the autistic child to marry or have children · How accepting was the caregiver of having an autistic child · A set of questions related to the specialized services provided by the health care system or that the caregiver wished to receive

Results- contd

Burden on Caregivers: The time that the child in the two groups spent sleeping, indoors or watching TV is illustrated in Figure 3 40% of the caregivers said they would encourage their child to get married, 20% said they would not, and the remaining 40% said they did not know 38% of the caregivers would encourage their child to become parent, 18% said they would not, and 43% did not know 45% of the caregivers said they `now' accept having a child with autism,9% did not accept, and 45% refused to answer 50% of caregivers in the AG said that `faith' helped them cope with the challenges of having a child with autism 56% of caregivers indicated that they take their child to special education classes 44% said that they have no access to such classes and they wish if they had 30% of caregivers attend special education classes to help them cope, over 60% said they do not have access to such classes

Study Objective

To assess the burden of ASD on the lives of parents

or caregivers of children with autism in Qatar through quantifying their health-related QoL Figure 1. Caregivers' Quality of Life Domains

Discussion

Eight QoL domains were measured by the generic SF-36 and only general health (GH) domain was impacted significantly the burden of autism on the lives of caregivers Overall QoL domains reported from caregivers of children with autism reflected poorer health compared to healthy children caregivers and the four domains of MCS were consistently poor These results confirm that caring for a child with autism does impact on the psychosocial aspect of the caregiver's or parent's QoL We used hours of sleep, time spent indoors, time spent watching TV or playing video games by the child with autism to be important variables that signify the burden on caregivers The cohort of children with autism in this study spend much more time indoors compared to their counterparts in the NAG Around half of the caregivers of children with autism did not wish to answer questions about encouraging their children to become parents reflecting the skepticism these caregivers in respect to the future of their children Faith did help a number of the caregivers of children with autism in coping The expressed need for special services among a subset of participants reflect some of the challenging facing the service providers Our study may suffer from information bias, where the person who reported that they were the primary caregiver may not have been the actual caregiver We allowed the caregiver to self-identify as we could not ask the child with autism

Methods

Ethical approval to conduct the study was sought from Hamad Medical Corporation, Shafallah Medical Genetics Center and Qatar Petroleum Health Center The study was cross sectional and exploratory in nature A literature review was conducted to develop a questionnaire that collects information related to the burden of ASD in Qatar, including demographic information related to the child and to the caregiver- Table 1 Quality of life (QoL) was assessed using the Lebanese Arabic version of the Standard Recall SF-36v2 obtained through license from QualityMetric Incorporated®3 The SF-36v2 domains/scales yield functional health and well-being scores, and aggregated into psychometrically-based physical and mental health summary measures Physical Component Summary (PCS) main components are PF, RP, and BP scales, while Mental Component Summary (MCS) main components are MH, RE, and SF Study Groups Autism Group (AG) Included caregivers of 3 -17 year old child who was diagnosed with autism using established screening and diagnostic tools Non Autism Group (NAG): Caregiver of 3-17 year old typically growing children (visiting a family clinic for routine medical check-up) Exclusion criteria Both groups: chronic medical conditions, comorbid developmental or psychiatric health condition, and recent changes in nuclear family's life (such as: Marriage or divorce) Recent initiation of behavioral therapy (for AG), or household child with autism (for NAG)

Figure 2. QoL of Both Groups-Physical Vs. Mental domains

Figure 3. Caregiver's Type of Work for the Two Groups Figures 3. Mean Time Spent By Children Sleeping, Watching TV, Staying Indoors

Results

A total of 98 participants consented to take part in the study (56 caregivers of children with autism, 42 caregivers of typically growing child) No statistically significant difference in the education level between the caregivers of the two groups (p<0.05) Quality of Life Findings: There was no statistically significant difference between QoL domains of the two groups of caregivers, but caregivers of children with autism rated their General Health as poor and likely to get worse (p=0.003) (Figure. 1) The two component summary scores of the two groups reveal an overall poorer mental health in the mental compared to the physical components although it did not reach statistical significance (MCS: p=0.158; PCS: p=0.847) (Figure.2) Female caregivers in the two groups had: o more Bodily Pain than men(p=0.000) o low Vitality than men (p=003) o more problems with work of other usual activities as a result of emotional problems (P=0.039) MCS scores indicated significantly poorer mental health in females than (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 to provide better and more focused support to the children with ASD and their families

Acknowledgement

This publication was made possible by a grant from the Qatar National Research Fund under its Undergraduate Research Experience Program.

Statistical Analysis

Chi-Square was used to assess change between group variables (categorical data) Student t-test was used to assess differences between group variables (numerical data) Statistical significance was set at p value of <0.05 Pearson correlation coefficient was used to measure associations between variables Data were computed using Microsoft Office Excel 97-2003 Worksheet and for QoL data, QualityMetric Health Outcomes Scoring Software 2.0 was used

References

1. National Health Interview Survey "The principal source of information on the health of the U.S. population" National Center for Health Statistics, Division of Health Interview Statistics, 3311 Toledo Road Hyattsville, Maryland 20782 2. DSM-IV; Diagnostic and statistical manual of mental disorders (4th ed.). American Psychiatric Association. 2000, Washington, DC. 3. The Short Form-36. Available in: http://www.qualitymetric.com/WhatWeDo/GenericHealthSurveys/tabid/184 /Default.aspx

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