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Quality of Life among Caregivers of children with Autism Spectrum Disorders, Intellectual Disability, and Typical Development

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A Correction to this article was published on 09 February 2021

This article has been updated

Abstract

Background

The quality of life (QoL) of the caregivers of children with autism spectrum disorder and intellectual disabilities has received limited attention in emerging economies such as those of the Arabian Gulf region.

Objectives

The aims of this investigation were threefold and sought to contribute to the gap in the literature by exploring the following issues in Oman: (i) to examine the socio-demographic characteristics of caregivers of children with autism spectrum disorder (ASD), intellectual disabilities (ID) and typical development (TD); (ii) to compare health satisfaction of caregivers of children with ASD, ID, and TD and (iii) to ascertain the relationship between QoL and socio-demographic factors among the families caring for children with ASD.

Methods

Two-hundred and twenty caregivers seeking consultation for their children with ASD were recruited for this study, in addition to the control group (caregivers of children with ID, n= 109), and caregivers of children with TD (n= 125). The overall number of participants was 454. An Arabic version of the World Health Organization Quality of Life (WHO QOL-BREF) was employed to measure QoL and health satisfaction.

Results

Compared to the caregivers of children with ID and TD, the caregivers of children with ASD scored lower on indices of QoL and reported poorer health status. Socio-demographic factors such as higher education were associated with improved QoL, which often entailed steady employment and higher-income.

Conclusions

This study suggests that poor QoL appears to be pervasive in caregivers of children with ASD in Oman. Given the increase in the reported prevalence of ASD, QoL should be considered when devising interventions and services for children presenting with these difficulties and their caregivers. This evidence-based research lays the foundation for systemic interventions and future allocation of resources.

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Notes

  1. OpenEpi is a programs used to perform power calculations, amongst many other analyses.

  2. ID was operationalized as an intelligence quotient (IQ) below 70 in the Stanford-Binet Intelligence Scales.

Abbreviations

ANOVA:

Analysis of variance

ASD:

Autism Spectrum Disorder

CAMS:

Child and Adolescent Mental Health Services

GCC:

Gulf Cooperation Council

ID:

Intellectual Disabilities

IQ:

Intelligence Quotient

IRB:

Institutional Review Board

MENA:

Middle East and North Africa

QoL:

Quality of Life

TD:

Typically Developing

WHO:

World Health Organization

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Acknowledgments

The authors thank the study staff and the staff at Sultan Qaboos University Hospital for their support. They also thank the caregivers of children with ASD and the volunteers that offered their support by participating in this study. The authors also want to thank their respective institutions for their continued support. The language and technical editing done by The Editing Refinery, MD, USA is highly acknowledged.

Availability of data and materials

All data generated or analyzed during this study are included in this published article.

Funding

This project was supported by funds from Sultan Qaboos University, His Majesty Strategic Research Grant Fund (Grant number SR/MED/FMCO/11/01).

Author information

Author notes

  1. Omar A. Al-Farsi, Yahya M. Al-Farsi, Marwan M. Al-Sharbati and Samir Al-Adawi contributed equally to this work

Authors and Affiliations

  1. Department of Family Medicine and Public Health, College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman

    Omar A. Al-Farsi & Yahya M. Al-Farsi

  2. Department of Epidemiology, School of Public Health, Boston, MA, USA

    Yahya M. Al-Farsi

  3. Department of Behavioural Medicine, College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman

    Marwan M. Al-Sharbati & Samir Al-Adawi

  4. Department of Psychotherapy and Counselling, Regent’s University London, Inner Circle, Regent’s Park, London, NW1 4NS, UK

    Angie Cucchi

  5. Department of Food Science and Nutrition, College of Agricultural and Marine Sciences, Sultan Qaboos University, Muscat, Oman

    Musthafa M. Essa

  6. Research & Policy Department, World Innovation Summit for Health (WISH) Qatar Foundation, P.O. Box 5825, Doha, Qatar

    M. Walid Qoronfleh

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  1. Omar A. Al-Farsi
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Contributions

OF and YF contributed to the design and implementation of the study. MS and SA contributed to case ascertainment and diagnosis. OF, AC and SA contributed to the drafting of the manuscript. MWQ and MME provided the conceptual work, framework, and critical editing. All authors read and approved the final manuscript.

Corresponding authors

Correspondence to Yahya M. Al-Farsi, Musthafa M. Essa or M. Walid Qoronfleh.

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None. The authors declare that there are no conflicts of / or competing interests.

Ethics approval and consent to participate

The study has been approved by the Medical Research Ethics Committee at the College of Medicine and Health Sciences, Sultan Qaboos University (MREC #786). The consent form was signed by all family caregivers before completing the questionnaire. This research adhered to the guidance of the World Medical Association’s Declaration of Helsinki (1964–2008) for Ethical Human Research entailing participant’s confidentiality, privacy, and handling of study data.

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Consent for publication was obtained through ethics approval and consent to participate.

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Al-Farsi, O.A., Al-Farsi, Y.M., Al-Sharbati, M.M. et al. Quality of Life among Caregivers of children with Autism Spectrum Disorders, Intellectual Disability, and Typical Development. Applied Research Quality Life 17, 129–145 (2022). https://doi.org/10.1007/s11482-020-09880-9

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