A narrative review on the prevalence of autism in a South African context
Vol 8, Issue 3, 2023, Article identifier:
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Abstract
Cultural perspectives are important when exploring caregivers’ experiences. However, not much research has been conducted in South Africa on the experiences of caregivers who are taking care of children living with an autism spectrum disorder. This study was aimed at reviewing literature on the experiences of caregivers living with autistic children. A narrative review was employed as the research method and information was purposively extracted from different databases such as Google Scholar, ScienceDirect and EBSCOHost to collect data. It was gathered that caregivers have insufficient knowledge and understanding regarding the child’s autism diagnosis. We also found that caregivers experience socio-economic and psychological challenges. Little social support is enjoyed by caregivers from community and family members as a coping strategy. Thus, we conclude and recommend that caregivers need a form of intervention that will help or assist their psychosocial well-being while providing care for their children. Moreover, caregivers have limited knowledge of autism and experience psychological challenges that are associated with the autism diagnosis of their child. This affects their subsequent abilities to efficiently provide care to the children.
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1. Stephens M. Screening for Autism Spectrum Disorders in South Africa: Using the Modified Checklist for Autism in Toddlers (M-CHAT) [Master’s thesis]. University of Cape Town; 2012.
2. Barlow DH, Durand VM, Hofmann SG. Abnormal Qsychology: An Integrative Approach. Cengage learning; 2016.
3. Adams SN, Dadabhay A, Neille J. An exploration into mothers’ experiences of feeding children with autism spectrum disorder in South Africa. Folia Phoniatr Logop 2021; 73(3): 164–173. doi: 10.1159/000507928
4. Parchment TM. Adult Caregivers’ Influence on Child Mental Health and Risk Behavior in South Africa: A Study Utilizing Secondary Data from the Collaborative HIV Adolescent Mental Health Program in South Africa [PhD thesis]. New York University; 2018.
5. Smit C. Exploring the Use and Relevance of Narrative Approaches to Psycho-Social Interventions in the South African Context: A Mixed Methods Content Analysis [PhD thesis]. University of Fort Hare; 2016.
6. Bakare MO, Munir KM. Autism spectrum disorders (ASD) in Africa: A perspective. African Journal of Psychiatry 2011; 14(3): 208–210. doi: 10.4314/ajpsy.v14i3.3
7. Lord C, Charman T, Havdahl A, et al. The lancet commission on the future of care and clinical research in autism. The Lancet 2022; 399(10321): 271–334. doi: 10.1016/S0140-6736(21)01541-5
8. Bakare MO, Ebigbo PO, Ubochi VN. Prevalence of autism spectrum disorder among Nigerian children with intellectual disability: A stopgap assessment. Journal of Health Care for the Poor and Underserved 2012; 23(2): 513–518. doi: 10.1353/hpu.2012.0056
9. Elsabbagh M, Divan G, Koh YJ, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Research 2012; 5(3): 160–179. doi: 10.1002/aur.239
10. Chiarotti F, Venerosi A. Epidemiology of autism spectrum disorders: A review of worldwide prevalence estimates since 2014. Brain Sciences 2020; 10(5): 274. doi: 10.3390/brainsci10050274
11. Pillay S, Duncan M, de Vries PJ. Autism in the western cape province of South Africa: Rates, socio-demographics, disability and educational characteristics in one million school children. Autism 2021; 25(4): 1076–1089. doi: 10.1177/1362361320978042
12. Bourson L, Prevost C. Characteristics of restricted interests in girls with ASD compared to boys: A systematic review of the literature. European Child & Adolescent Psychiatry 2022; 1–8. doi: 10.1007/s00787-022-01998-5
13. Britz BR, Mason HD. Parent caregiver perceptions of the behaviour of their children with autism spectrum disorder: A qualitative exploratory study. Journal of Psychology in Africa 2020; 30(6): 572–577. doi: 10.1080/14330237.2020.1842584
14. Cloete LG, Obaigwa EO. Lived experiences of caregivers of children with autism spectrum disorder in Kenya. African Journal of Disability 2019; 8(1): 19. doi: 10.4102/ajod.v8i0.435
15. Traver S, Geoffray MM, Mazières L, et al. Association between prenatal and perinatal factors and the severity of clinical presentation of children with ASD: Report from the ELENA COHORT. Journal of Psychiatric Research 2021; 137: 634–642. doi: 10.1016/j.jpsychires.2020.11.005
16. DeLucia EA, Semones O, Stanton K, McDonnell CG. Advancing understanding of autism within families: Caregiver broader autism phenotype traits differentially relate to parenting behavior. Journal of Child and Family Studies 2021; 31: 753–763. doi: 10.1007/s10826-021-02022-1
17. Khanna R, Madhavan SS, Smith MJ, et al. Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders 2011; 41: 1214–1227. doi: 10.1007/s10803-010-1140-6
18. Lai WW, Oei TPS. Coping in parents and caregivers of children with autism spectrum disorders (ASD): A review. Review Journal of Autism and Developmental Disorders 2014; 1: 207–224. doi: 10.1007/s40489-014-0021-x
19. de Vries PJ. Thinking globally to meet local needs: Autism spectrum disorders in Africa and other low-resource environments. Current Opinion in Neurology 2016; 29(2): 130–136. doi: 10.1097/WCO.0000000000000297
20. Dumont-Mathieu T, Fein D. Screening for autism in young children: The modified checklist for autism in toddlers (M-CHAT) and other measures. Mental Retardation and Developmental Disabilities Research Reviews 2005; 11(3): 253–262. doi: 10.1002/mrdd.20072
21. Marlow M, Servili C, Tomlinson M. A review of screening tools for the identification of autism spectrum disorders and developmental delay in infants and young children: Recommendations for use in low- and middle-income countries. Autism Research 2019; 12(2): 176–199. doi: 10.1002/aur.2033
22. Barbaro J, Dissanayake C. Autism spectrum disorders in infancy and toddlerhood: A review of the evidence on early signs, early identification tools, and early diagnosis. Journal of Developmental & Behavioral Pediatrics 2009; 30(5): 447–459. doi: 10.1097/DBP.0b013e3181ba0f9f
23. Bauman ML. Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics 2010; 7: 320–327. doi: 10.1016/j.nurt.2010.06.001
24. Peters-Scheffer N, Didden R, Korzilius H. Maternal stress predicted by characteristics of children with autism spectrum disorder and intellectual disability. Research in Autism Spectrum Disorders 2012; 6(2): 696–706. doi: 10.1016/j.rasd.2011.10.003
25. Ramseur K II, de Vries PJ, Guler J, et al. Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa. Pediatric Medicine 2019; 2. doi: 10.21037/pm.2019.03.04
26. Guler J, de Vries PJ, Seris N, et al. The importance of context in early autism intervention: A qualitative South African study. Autism 2018; 22(8): 1005–1017. doi: 10.1177/1362361317716604
27. Dickson E, Osarfo J, Asampong E, Kretchy I. Clinical presentation and pattern of neuro-developmental disorders in a health facility in Ghana: Implications for the health and educational sectors. Health Sciences Investigation 2020; 1(2): 114–120. doi: 10.46829/hsijournal.2020.12.1.2.114-120
28. Canal-Bedia R, García-Primo P, Martín-Cilleros MV, et al. Modified checklist for autism in toddlers: Cross-cultural adaptation and validation in Spain. Journal of Autism and Developmental Disorders 2011; 41: 1342–1351. doi: 10.1007/s10803-010-1163-z
29. Baird G, Simonoff E, Pickles A, et al. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The special needs and autism project (SNAP). The Lancet 2006; 368(9531): 210–215. doi: 10.1016/S0140-6736(06)69041-7
30. Shilubane H, Mazibuko N. Understanding autism spectrum disorder and coping mechanism by parents: An explorative study. International Journal of Nursing Sciences 2020; 7(4): 413–418. doi: 10.1016/j.ijnss.2020.08.003
31. Kanja MW, Mwenje M, Githui P. Effects of caregiving of children with autism spectrum disorder on the caregivers’ psychological wellbeing in selected integrated primary schools in Nairobi county, Kenya. International Journal of Education, Psychology and Counselling 2022; 7(45): 328–342. doi: 10.35631/IJEPC.745026
32. Grinker RR, Kang-Yi CD, Ahmann C, et al. Cultural adaptation and translation of outreach materials on autism spectrum disorder. Journal of Autism and Developmental Disorders 2015; 45: 2329–2336. doi: 10.1007/s10803-015-2397-6
33. Pandey S, Sharma C. Perceived burden in caregivers of children with autism spectrum disorder in Kathmandu valley. Journal of Nepal Health Research Council 2018; 16(2): 184–189.
34. Alnazly EK, Abojedi A. Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder. Perspect in Psychiatric Care 2019; 55(3): 501–508. doi: 10.1111/ppc.12356
35. Bravo-Benítez J, Pérez-Marfil MN, Román-Alegre B, Cruz-Quintana F. Grief experiences in family caregivers of children with autism spectrum disorder (ASD). International Journal of Environmental Research and Public Health 2019; 16(23): 4821. doi: 10.3390/ijerph16234821
36. Habayeb S, Dababnah S, John A, Rich B. Cultural experiences of Arab American caregivers raising children with autism spectrum disorder. Journal of Autism and Developmental Disorders 2020; 50: 51–62. doi: 10.1007/s10803-019-04218-3
37. Higgins DJ, Bailey SR, Pearce JC. Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism 2005; 9(2): 125–137. doi: 10.1177/1362361305051403
38. Yu Y, McGrew JH, Rand KL, Mosher CE. Using a model of family adaptation to examine outcomes of caregivers of individuals with autism spectrum disorder transitioning into adulthood. Research in Autism Spectrum Disorders 2018; 54: 37–50. doi: 10.1016/j.rasd.2018.06.007
39. Onwuegbuzie AJ, Frels R. Seven Steps to a Comprehensive Literature Review: A Multimodal and Cultural Approach. Sage; 2016.
40. Mazibuko N, Shilubane HN, Manganye BS. Caring for children diagnosed with autism spectrum disorder: Caregivers’ experiences. Africa Journal of Nursing and Midwifery 2020; 22(2): 1–14. doi: 10.25159/2520-5293/6192
41. Samadi H, Samadi SA. Understanding different aspects of caregiving for individuals with autism spectrum disorders (ASDs): A narrative review of the literature. Brain Sciences 2020; 10(8): 557. doi: 10.3390/brainsci10080557
42. Mitra S, Bhattacharya A, Mitra D, Sanyal N. A qualitative lens on the sources of stress and coping pattern of caregivers of children with autism spectrum disorder. Journal of Disability Studies 2021; 7(1): 3–9.
43. Lovell B, Wetherell MA. Caregivers’ characteristics and family constellation variables as predictors of affiliate stigma in caregivers of children with ASD. Psychiatry Research 2018; 270: 426–429. doi: 10.1016/j.psychres.2018.09.055
44. Nik Adib NA, Ibrahim MI, Ab Rahman A, et al. Perceived stress among caregivers of children with autism spectrum disorder: A state-wide study. International Journal of Environmental Research and Public Health 2019; 16(8): 1468. doi: 10.3390/ijerph16081468
45. Comninos S. ILizwe Lam (my world): Xhosa-speaking Parents’ Experiences of Caring for a Child with Autism Spectrum Disorder [PhD thesis]. Stellenbosch University; 2021.
46. Liao X, Lei X, Li Y. Stigma among parents of children with autism: A literature review. Asian Journal of Psychiatry 2019; 45: 88–94. doi: 10.1016/j.ajp.2019.09.007
47. Kinnear SH, Link BG, Ballan MS, Fischbach RL. Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders 2016; 46: 942–953. doi: 10.1007/s10803-015-2637-9
48. Ware AN. Examining the Process and Impact of Parent Affiliate Stigma on Raising a Child with ASD in African American Families [PhD thesis]. The Catholic University of America; 2022.
49. Parish SL, Thomas KC, Williams CS, Crossman MK. Autism and families’ financial burden: The association with health insurance coverage. American Association on Intellectual and Developmental Disabilities 2015; 120(2): 166–175. doi: 10.1352/1944-7558-120.2.166
50. Sharpe DL, Baker DL. The financial side of autism: Private and public costs. In: Mohammadi MR (editor). A Comprehensive Book on Autism Spectrum Disorders. InTech; 2011.
51. Erasmus S, Kritzinger A, van der Linde J. Families raising children attending autism-specific government-funded schools in South Africa. Journal of Family Studies 2022; 28(1): 54−69. doi: 10.1080/13229400.2019.1676292
52. Dieleman LM, Moyson T, de Pauw SS, et al. Parents’ need-related experiences and behaviors when raising a child with autism spectrum disorder. Journal of Pediatric Nursing 2018; 42: e26–e37. doi: 10.1016/j.pedn.2018.06.005
53. Giallo R, Wood CE, Jellett R, Porter R. Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism 2013; 17(4): 465–480. doi: 10.1177/1362361311416830
54. Ang KQ, Loh PR. Mental health and coping in parents of children with autism spectrum disorder (ASD) in Singapore: An examination of gender role in caring. Journal of Autism and Developmental Disorders 2019; 49(5): 2129–2145. doi: 10.1007/s10803-019-03900-w
55. Benson PR. Coping and psychological adjustment among mothers of children with ASD: An accelerated longitudinal study. Journal of Autism and Developmental Disorders 2014; 44: 1793–1807. doi: 10.1007/s10803-014-2079-9
56. Smith LE, Seltzer MM, Tager-Flusberg H, et al. A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders 2008; 38: 876–889. doi: 10.1007/s10803-007-0461-6
57. Gentles SJ, Nicholas DB, Jack SM, et al. Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism 2020; 24(2): 470–483. doi: 10.1177/1362361319874647
58. Zeng S, Zhao H, Hu X, et al. Are we on the same page: A dyadic analysis of parental stress, support, and family quality of life on raising children with autism spectrum disorders. Journal of Developmental and Physical Disabilities 2021; 33: 599–618. doi: 10.1007/s10882-020-09761-x
59. Zhao M, Fu W. The resilience of parents who have children with autism spectrum disorder in China: A social culture perspective. International Journal of Developmental Disabilities 2022; 68(2): 207–218. doi: 10.1080/20473869.2020.1747761
60. Vernhet C, Dellapiazza F, Blanc N, et al. Coping strategies of parents of children with autism spectrum disorder: A systematic review. European Child & Adolescent Psychiatry 2019; 28: 747–758. doi: 10.1007/s00787-018-1183-3
61. Biggs A, Brough P, Drummond S. Lazarus and Folkman’s psychological stress and coping theory. In: Cooper CL, Campbell Quick J (editors). The Handbook of Stress and Health: A Guide to Research and Practice. John Wiley & Sons; 2017. pp. 349–364.
62. Hoffman E. Raising a Child with Autism: Exploring Family Support Structures [PhD thesis]. Stellenbosch University; 2012.
63. Kang SG, Song SW, Kim SH, et al. Fatigue and mental status of caregivers of severely chronically ill patients. Pain Research and Management 2020; 2020: 6372857. doi: 10.1155/2020/6372857
64. Seymour M, Wood C, Giallo R, Jellett R. Fatigue, stress and coping in mothers of children with an autism spectrum disorder. Journal of Autism and Developmental Disorders 2013; 43: 1547–1554. doi: 10.1007/s10803-012-1701-y
65. Lee MH, Min A, Park C, Kim I. How do sleep disturbances relate to daytime functions, care-related quality of life, and parenting interactions in mothers of children with autism spectrum disorder? Journal of Autism and Developmental Disorders 2022; 53: 2764–2772. doi: 10.1007/s10803-022-05532-z
DOI: https://doi.org/10.54517/esp.v8i3.1726
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