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Quality of life among parents of South African children with autism spectrum disorder

Published online by Cambridge University Press:  22 March 2018

Ayman Alhazmi ,
Reneva Petersen  and
Kirsten A Donald
Ayman Alhazmi
Affiliation:
Department of Developmental Paediatrics, Department of Paediatrics and Child Health, University of Cape Town, Red Cross War Memorial Children’s Hospital, Cape Town, South Africa Department of Developmental Paediatrics, Children Hospital, King Saud Medical City, Riyadh, Saudi Arabia
Reneva Petersen
Affiliation:
Department of Developmental Paediatrics, Department of Paediatrics and Child Health, University of Cape Town, Red Cross War Memorial Children’s Hospital, Cape Town, South Africa
Kirsten A Donald*
Affiliation:
Department of Developmental Paediatrics, Department of Paediatrics and Child Health, University of Cape Town, Red Cross War Memorial Children’s Hospital, Cape Town, South Africa
*
Author for correspondence: Professor Kirsten Donald, Department of Developmental Paediatrics, Department of Paediatrics and Child Health, University of Cape Town, Red Cross War Memorial Children’s Hospital, Klipfontein Rd, Rondebosch, Cape Town, South Africa. Tel: +27216505535; E-mail: Kirsty.Donald@uct.ac.za
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Abstract

Objective

To describe the quality of life (QOL) of South African parents caring for children with autism spectrum disorder (ASD) as compared with parents of typically developing (TD) children from the same community.

Methods

A cross-sectional study was done evaluating the QOL of parents of 52 children (26 parents of children with ASD versus 26 parents of TD children) using a structured measure, (World Health Organization Quality of Life Assessment-BREF).

Results

The mean age of the children with ASD was 64.9 months (SD 14.5) versus 60.1 months (SD 13.5) for TD group. There was a male predominance among group of children with ASD (48 boys, four girls). The mean parental age of the ASD group was 32.9 years (SD 7.8) compared with 33.8 years (SD 6.8) for the TD group. As compared with parents of the TD children, parents of children with ASD had lower mean QOL scores in the four QOL domains: physical, psychological, social and environmental health (p<0.0001). the domain where the discrepancy between groups was greatest was the physical domain Where the mean score was 52.1 (SD 18.7) in the ASD group and 92 (SD 10.4) in the TD group. Lower income, severity level of ASD and lack of access to school placement of children with ASD were found significantly associated with parents’ QOL domains.

Conclusion

QOL of parents of children with ASD is significant lower than that of the parents of their TD peers across all domains and is an important component in management of the family which needs to be explored and addressed.

Keywords

autism spectrum disorderscaregiversparentsquality of life
Type
Original Article
Information
Acta Neuropsychiatrica , Volume 30 , Issue 4 , August 2018 , pp. 226 - 231
Copyright
© Scandinavian College of Neuropsychopharmacology 2018 

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References

1. American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders (DSM-5®). Washington, DC: American Psychiatric Publications.Google Scholar
2. Centers for Disease Control and Prevention. Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/data.html Accessed 3 May 2017.Google Scholar
3. Blumberg, SJ, Bramlett, MD, Kogan, MD, Schieve, LA, Jones, JR Lu, MC (2013) Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011–2012. Natl Health Stat Report 65, 1–7.Google Scholar
4. Whoqol Group (1995) The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 41, 1403–1409.Google Scholar
5. Verdugo, MA, Schalock, RL, Keith, KD Stancliffe, RJ (2005) Quality of life and its measurement: important principles and guidelines. J Intellect Disabil Res 49, 707–717.Google Scholar
6. Mugno, D, Ruta, L, D’Arrigo, VG Mazzone, L (2007) Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 5, 22.Google Scholar
7. Tung, L, Huang, C, Tseng, M, Yen, H, Tsai, Y, Lin, Y Chen, K (2014) Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism. Research in Autism Spectr Disord 8, 1235–1242.Google Scholar
8. Perumal, V, Veeraraghavan, V Lekhra, OP (2014) Quality of life in families of children with autism spectrum disorder in India. J Pharm Res 8, 791–797.Google Scholar
9. Yamada, A, Kato, M, Suzuki, M, Suzuki, M, Watanabe, N, Akechi, T Furukawa, TA (2012) Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry 12, 119.Google Scholar
10. Lindsay, WR (2002) Community services and quality of life. J Appl Res Intellect Disabil 15, 367–368.Google Scholar
11. de Vries, PJ (2016) Thinking globally to meet local needs: autism spectrum disorders in Africa and other low-resource environments. Curr Opin Neurol 29, 130–136.Google Scholar
12. Tomlinson, M (2013) Caring for the caregiver: a framework for support. South African Child Gauge. Cape Town: Children’s Institute, University of Cape Town.Google Scholar
13. Dardas, LA Ahmad, MM (2014) Psychosocial correlates of parenting a child with autistic disorder. J Nurs Res 22, 183–191.Google Scholar
14. Hatton, C Emerson, E (2009) Does socioeconomic position moderate the impact of child behaviour problems on maternal health in South Asian families with a child with intellectual disabilities? J Intellect Dev Disabil 34, 10–16.Google Scholar
15. Parish, SL, Seltzer, MM, Greenberg, JS, Floyd, F Taylor, SJ (2004) Economic implications of caregiving at midlife: comparing parents with and without children who have developmental disabilities. Ment Retard 42, 413–426.Google Scholar
16. Schlebusch, L, Dada, S Samuels, AE (2017) Family quality of life of South African families raising children with autism spectrum disorder. J Autism Dev Disord 47, 1966–1977.Google Scholar
17. World Health Organization (1996) Quality of life (WHOQOL)-Brief questionnaire, field trial version. Geneva: WHO.Google Scholar
18. R Core Team (2011) R: a language and environment for statistical computing. https://www.r-project.org Accessed 3 May 2017.Google Scholar
19. Mody, M (2014) Nonverbal individuals with autism spectrum disorder: Why don’t they speak? N Am J Med Sci 7, 130–134.Google Scholar
20. Shu, BC (2009) Quality of life of family caregivers of children with autism: the mother’s perspective. Autism 13, 81–91.Google Scholar
21. Kheir, N, Ghoneim, O, Sandridge, AL, Al-Ismail, M, Hayder, S Al-Rawi, F (2012) Quality of life of caregivers of children with autism in Qatar. Autism 16, 293–298.Google Scholar
22. Allik, H, Larsson, J Smedje, H (2006) Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual Life Outcomes 4, 1.Google Scholar
23. Dardas, LA Ahmad, MM (2014) Quality of life among parents of children with autistic disorder: a sample from the Arab world. Res Dev Disabil 35, 278–287.Google Scholar
24. Ghanizadeh, A, Alishahi, M Ashkani, H (2009) Helping families for caring children with autistic spectrum disorders. Arch Iran Med 12, 478–482.Google Scholar
25. Meltzer, LJ (2008) Brief report: sleep in parents of children with autism spectrum disorders. J Pediatr Psychol 33, 380–386.Google Scholar
26. Hartley, SL, Barker, ET, Seltzer, MM, Floyd, F, Greenberg, J, Orsmond, G Bolt, D (2010) The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol 24, 449–457.Google Scholar
27. Dardas, LA Ahmad, MM (2014) Predictors of quality of life for fathers and mothers of children with autistic disorder. Res Dev Disabil 35, 1326–1333.Google Scholar
28. Dardas, LA (2014) Stress, coping strategies and quality of life among Jordanian parents of children with autistic disorder. Autism 4, 2.Google Scholar
29. Pozo, P, Sarriá, E Brioso, A (2014) Family quality of life and psychological well‐being in parents of children with autism spectrum disorders: a double ABCX model. J Intellect Disabil Res 58, 442–458.Google Scholar
30. Gray, DE (1993) Perceptions of stigma: the parents of autistic children. Sociol Health Illn 15, 102–120.Google Scholar
31. Eskow, K, Pineles, L Summers, JA (2011) Exploring the effect of autism waiver services on family outcomes. J Policy Pract Intellect Disabil 8, 28–35.Google Scholar
32. Eskow, KG, Chasson, GS Summers, JA (2015) A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program. J Autism Dev Disord 45, 626–635.Google Scholar
33. Mendoza, RL (2010) The economics of autism in Egypt. AJEBA 2, 12.Google Scholar