Stigma among Parents of Children with Autism: An Integrative Review

Authors

  • Thi Loan Khanh NamDinh University of Nursing, Vietnam and Hanoi Medical University, Vietnam.
  • Thi Lan Anh Mai Namdinh University of Nursing, Vietnam.
  • Phương Anh Hoang Queensland University of Technology, Australia, and Hanoi Medical University, Vietnam.

DOI:

https://doi.org/10.60099/prijnr.2023.261650

Keywords:

Autism, Children, Integrative review, Parents, Stigma

Abstract

The number of children diagnosed with autism is increasing around the world. The role of parents is vital in caring for children with autism, but stigma is a challenging and prevalent aspect that families face in raising and caring for them. This integrative review, undertaken by nurse researchers in 2022, synthesized the existing knowledge of current studies about stigma status and the factors relating to stigma among parents of children with an autism spectrum disorder. The electronic databases searched included PubMed, CINAHL (EBSCO), EMBASE, and Scopus, using the keywords “stigmatization,” “parents,” and “autism.”

Thirty-six studies without time limits were included in this review, 16 qualitative, 15 quantitative, four mixed-method, and one interventional study. The results indicated that stigma was common among parents of children with autism in all studies. However, there was a difference related to cultural stigma among parents with autism in Western, Asian, and Middle Eastern countries. Both modifiable and unmodifiable factors were associated with the stigma, for example, parents’ age, marital status, child’s behavior, and social support. Further longitudinal studies on stigma should be conducted in low-resource areas with different caregivers in large sample sizes to identify the prevalence of stigma and stigma changes among parents of children with autism. This review’s results provide evidence for further intervention studies that address factors related to reducing stigma among parents of children with autism. Moreover, healthcare professionals, including nurses working with these families, should assess the level of stigma among these parents to provide timely support.

References

American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-V. Washington, DC: Amerian Psychiatric Press; 2013. DOI: https://doi.org/10.1176/appi.books.9780890425596

Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1-23. doi: 10.15585/mmwr.ss6706a1. DOI: https://doi.org/10.15585/mmwr.ss6706a1

Maenner MJ, Shaw KA, Baio J, Washington A, Patrick M, DiRienzo M, et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveill Summ. 2020;69(4):1-12. doi: 10.15585/mmwr.ss6904a1. DOI: https://doi.org/10.15585/mmwr.ss6903a1

Hoang VM, Le TV, Chu TTQ, Le BN, Duong MD, Thanh NM, et al. Prevalence of autism spectrum disorders and their relation to selected socio-demographic factors among children aged 18-30 months in northern Vietnam, 2017. Int J Ment Health Syst. 2019;13:29. doi: 10.1186/s13033-019-0285-8. DOI: https://doi.org/10.1186/s13033-019-0285-8

Zuckerman KE, Lindly OJ, Reyes NM, Chavez AE, Cobian M, Macias K, et al. Parent perceptions of community autism spectrum disorder stigma: measure validation and associations in a multi-site sample. J Autism Dev Disord. 2018;48(9): 3199-209. doi: 10.1007/s10803-018-3586-x. DOI: https://doi.org/10.1007/s10803-018-3586-x

Burrell TL, Borrego J. Parents’ involvement in ASD treatment: what is their role? Cogn Behav Pract. 2012;19(3):423-32. doi: 10.1016/j.cbpra.2011.04.003. DOI: https://doi.org/10.1016/j.cbpra.2011.04.003

Ali A, Hassiotis A, Strydom A, King M. Self stigma in people with intellectual disabilities and courtesy stigma in family carers: a systematic review. Res Dev Disabil. 2012;33(6): 2122-40. doi: 10.1016/j.ridd.2012.06.013. DOI: https://doi.org/10.1016/j.ridd.2012.06.013

Kinnear SH, Link BG, Ballan MS, Fis chbach RL. Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. J Autism Dev Disord. 2016;46(3): 942-53. doi: 10.1007/s10803-015-2637-9. DOI: https://doi.org/10.1007/s10803-015-2637-9

Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliff, Prentice-Hall;1963.

Broady TR. Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum. Health Soc Care Community. 2017 Jan;25(1):224-233. doi: 10.1111/hsc.12297. DOI: https://doi.org/10.1111/hsc.12297

Alshaigi K, Albraheem R, Alsaleem K, Zakaria M, Jobeir A, Aldhalaan H. Stigmatization among parents of autism spectrum disorder children in Riyadh, Saudi Arabia. Int J Pediatr Adolesc Med. 2020;7(3):140-6. doi: 10.1016/ j.ijpam.2019.06.003. DOI: https://doi.org/10.1016/j.ijpam.2019.06.003

Mitter N, Ali A, Scior K. Stigma experienced by family members of people with intellectual and developmental disabilities: multidimensional construct. BJPsych Open. 2018;4(5):332-8. doi: 10.1192/bjo.2018.39. DOI: https://doi.org/10.1192/bjo.2018.39

Zhou T, Wang Y, Yi C. Affiliate stigma and depression in caregivers of children with autism spectrum disorders in China: effects of self-esteem, shame and family functioning. Psychiatry Res. 2018;264:260-5. doi: 10.1016/j. psychres.2018.03.071. DOI: https://doi.org/10.1016/j.psychres.2018.03.071

Chan KKS, Lam CB. Trait mindfulness attenuates the adverse psychological impact of stigma on parents of children with autism spectrum disorder. Mindfulness. 2017;8(4): 984-94. doi: 10.1007/s12671-016-0675-9. DOI: https://doi.org/10.1007/s12671-016-0675-9

Lodder A, Papadopoulos C, Randhawa G. Stigma of living as an autism carer: a brief psycho-social support intervention (SOLACE). Study protocol for a randomized controlled feasibility study. Pilot Feasibility Stud. 2019;5(1):34. doi: 10.1186/s40814-019-0406-9. DOI: https://doi.org/10.1186/s40814-019-0406-9

Chan KKS, Lam CB. Self-stigma among parents of children with autism spectrum disorder. Res Autism Spectr Disord. 2018;48:44-52. doi: 10.1016/j.rasd.2018.01.001. DOI: https://doi.org/10.1016/j.rasd.2018.01.001

Čolić M, Milačić-Vidojević I. Perceived stigma among Serbian parents of children with autism spectrum disorder and children with physical disabilities: validation of a new instrument. J Autism Dev Disord. 2021;51(2):501-13. doi: 10.1007/s10803-020-04559-4. DOI: https://doi.org/10.1007/s10803-020-04559-4

Patra S, Patro BK. Affiliate stigma among parents of children with autism in eastern India. Asian J Psychiatr. 2019;44:45-7. doi: 10.1016/j.ajp.2019.07.018. DOI: https://doi.org/10.1016/j.ajp.2019.07.018

Minhas A, Vajaratkar V, Divan G, Hamdani SU, Leadbitter K, Taylor C, et al. Parents' perspectives on care of children with autistic spectrum disorder in South Asia - Views from Pakistan and India. Int Rev Psychiatry. 2015;27(3):247-56. doi: 10.3109/09540261.2015.1049128. DOI: https://doi.org/10.3109/09540261.2015.1049128

Gray D. ‘Everybody just freezes. Everybody is just embarrassed': felt and enacted stigma among parents of children with high-functioning autism. Sociol Health Illn. 2002;24(6):734-49. doi: 10.1111/1467-9566.00316. DOI: https://doi.org/10.1111/1467-9566.00316

Oduyemi AY, Okafor IP, Eze UT, Akodu BA, Roberts AA.Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study. BMC Psychol. 2021;9(1):182. doi: 10.1186/s40359-021-00687-3. DOI: https://doi.org/10.1186/s40359-021-00687-3

Cantwell J, Muldoon O, Gallagher S. The influence of self-esteem and social support on the relationship between stigma and depressive symptomology in parents caring for children with intellectual disabilities. J Intellect Disabil Res. 2015;59(10):948-57. doi: 10.1111/jir.12205. DOI: https://doi.org/10.1111/jir.12205

Tekola B, Kinfe M, Girma F, Hanlon C, Hoekstra RA. Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: a qualitative study. Soc Sci Med. 2020;256:113034. doi: 10.1016/j.socscimed.2020.113034. DOI: https://doi.org/10.1016/j.socscimed.2020.113034

Gill J, Liamputtong P. Being the mother of a child with Asperger's syndrome: women's experiences of stigma. Health Care Women Int. 2011;32(8):708-22. doi: 10.1080/07399332.2011.555830. DOI: https://doi.org/10.1080/07399332.2011.555830

Lovell B, Wetherell MA. Caregivers' characteristics and family constellation variables as predictors of affiliate stigma in caregivers of children with ASD. Psychiatry Res. 2018;270:426-9. doi: 10.1016/j.psychres.2018.09.055. DOI: https://doi.org/10.1016/j.psychres.2018.09.055

Ijalba E. Hispanic immigrant mothers of young children with autism spectrum disorders: how do they understand and cope with autism? Am J Speech Lang Pathol. 2016; 25(2):200-13. doi: 10.1044/2015_ajslp-13-0017. DOI: https://doi.org/10.1044/2015_AJSLP-13-0017

Mak WWS, Kwok YTY. Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Soc Sci Med. 2010;70(12):2045-51. doi: 10.1016/j.socscimed.2010.02.023. DOI: https://doi.org/10.1016/j.socscimed.2010.02.023

Werner S, Shulman C. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables. Res Dev Disabil. 2013;34(11):4103-14. doi: 10.1016/j.ridd.2013.08.029. DOI: https://doi.org/10.1016/j.ridd.2013.08.029

Russell G, Norwich B. Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders. Clin Child Psychol Psychiatry. 2012;17(2): 229-45. doi: 10.1177/1359104510365203. DOI: https://doi.org/10.1177/1359104510365203

Liao X, Lei X, Li Y. Stigma among parents of children with autism: a literature review. Asian J Psychiatr. 2019; 45:88-94. doi: 10.1016/j.ajp.2019.09.007. DOI: https://doi.org/10.1016/j.ajp.2019.09.007

Anjos B, Morais N. Experiences of families with autistic children: an integrative literature review. Cienc Psicol. 2021; 15(1):e-2347. doi: 10.22235/cp.v15i1.2347. DOI: https://doi.org/10.22235/cp.v15i1.2347

Whittemore R. Combining evidence in nursing research: methods and implications. Nurs Res. 2005;54:56-62. doi: 10.1097/00006199-200501000-00008. DOI: https://doi.org/10.1097/00006199-200501000-00008

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. doi: 10.1136/bmj.n71. DOI: https://doi.org/10.1136/bmj.n71

Moola S, Munn Z, Tufanaru C, Aromataris E, Sears K, Sfetcu R, et al. Chapter 7: Systematic reviews of etiology and risk. In: Aromataris E, Munn Z, editors. JBI manual for evidence synthesis. JBI; 2020. Available from: https://doi.org/10.46658/JBIMES-20-08 DOI: https://doi.org/10.46658/JBIRM-17-06

Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc. 2015;13(3):179-87. doi: 10.1097/XEB.0000000 000000062. DOI: https://doi.org/10.1097/XEB.0000000000000062

Barker TH, Stone JC, Sears K, Klugar M, Tufanaru C, Leonardi-Bee J, et al. The revised JBI critical appraisal tool for the assessment of risk of bias for randomized controlled trials. JBI Evid Synth. 2023;21(3):494-506. doi: 10.11124/JBIES-22-00430. DOI: https://doi.org/10.11124/JBIES-22-00430

Lucas PJ, Baird J, Arai L, Law C, Roberts HM. Worked examples of alternative methods for the synthesis of qualitative and quantitative research in systematic reviews. BMC Med Res Methodol. 2007;7:4. doi: 10.1186/1471-2288-7-4. DOI: https://doi.org/10.1186/1471-2288-7-4

Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan-a web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. doi: 10.1186/s13643-016-0384-4. DOI: https://doi.org/10.1186/s13643-016-0384-4

Manor-Binyamini I, Shoshana A. Listening to Bedouin mothers of children with autism. Cult Med Psychiatry. 2018; 42(2):401-18. doi: 10.1007/s11013-018-9567-x. DOI: https://doi.org/10.1007/s11013-018-9567-x

Dehnavi S, Malekpour M, Faramarzi S, Talebi H. The share of internalized stigma and autism quotient in predicting the mental health of mothers with autistic children in Iran. IJBSS. 2011;2(20):251-9.

Gobrial E. The lived experiences of mothers of children with autism spectrum disorders in Egypt. Soc Sci.2018;7(8):133. DOI: https://doi.org/10.3390/socsci7080133

Gray DE. Perceptions of stigma: the parents of autistic children.Sociol Health Illn. 1993;15(1):102-20. DOI: https://doi.org/10.1111/1467-9566.ep11343802

Farrugia D. Exploring stigma: medical knowledge and the stigmatization of parents of children diagnosed with an autism spectrum disorder. Sociol Health Illn. 2009;31(7):1011-27. doi: 10.1111/j.1467-9566.2009.01174.x. DOI: https://doi.org/10.1111/j.1467-9566.2009.01174.x

Ha VS, Whittaker A, Whittaker M, Rodger S. Living with autism spectrum disorder in Hanoi, Vietnam. Soc Sci Med. 2014;120:278-85. doi: 10.1016/j.socscimed.2014.09.038. DOI: https://doi.org/10.1016/j.socscimed.2014.09.038

Blanche EI, Diaz J, Barretto T, Cermak SA. Caregiving experiences of Latino families with children with an autism spectrum disorder. Am J Occup Ther. 2015; 69(5): 6905185010p1-11. doi: 10.5014/ajot.2015. 017848. DOI: https://doi.org/10.5014/ajot.2015.017848

Ng CKM, Lam SHF, Tsang STK, Yuen CMC, Chien CW. The relationship between affiliate stigma in parents of children with autism spectrum disorder and their children’s activity participation. Int J Environ Res Public Health. 2020;17(5):1799. doi: 10.3390/ijerph17051799. DOI: https://doi.org/10.3390/ijerph17051799

Werner S, Shulman C. Does the type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability? J Intellect Disabil Res. 2015;59(3):272-83. doi: 10.1111/jir.12136. DOI: https://doi.org/10.1111/jir.12136

Wong C, Mak W, Liao K. Self-compassion: a potential buffer against affiliate stigma experienced by parents of children with autism spectrum disorders. Mindfulness. 2016;7: 1385-95. doi: 10.1007/s12671-016-0580-2. DOI: https://doi.org/10.1007/s12671-016-0580-2

Dababnah S, Parish SL. “At a moment, you could collapse”: raising children with autism in the West Bank. Child Youth Serv Rev. 2013;35(10):1670-8. doi: 10.1016/j.childyouth. 2013.07.007. DOI: https://doi.org/10.1016/j.childyouth.2013.07.007

Corrigan PW, Watson AC. The paradox of self-stigma and mental illness. Clin Psychol. 2002;9(1):35-53. doi: 10.1093/clipsy.9.1.35. DOI: https://doi.org/10.1093/clipsy.9.1.35

Mak W, Cheung R. Affiliate stigma among caregivers of people with intellectual disability or mental illness. J Appl Res Intellect Disabil. 2008;21(6):532-45. doi: 10.1111/ j.1468-3148.2008.00426.x. DOI: https://doi.org/10.1111/j.1468-3148.2008.00426.x

Byrne G, Sarma K, Hendler J, O’Connell A. On the spectrum, off the beaten path. A qualitative study of Irish parents’ experiences of raising a child with autism spectrum conditions. Br J Learn Disabil. 2018;46(3):182-92. doi: 10.1111/bld.12227. DOI: https://doi.org/10.1111/bld.12227

Neely-Barnes SL, Hall HR, Roberts RJ, Graff JC. Parenting a child with an autism spectrum disorder: public perceptions and parental conceptualizations. J Fam Soc Work. 2011; 14(3):208-25. doi: 10.1080/10522158.2011.571539. DOI: https://doi.org/10.1080/10522158.2011.571539

Tait K, Mundia L, Fung F. Raising young children with autism spectrum disorders in Hong Kong: the impact of cultural values and stigma on Chinese parents’ coping strategies. Int J Adv Soc sci Humanit. 2014;2(1):7-15.

Kane JC, Elafros MA, Murray SM, Mitchell EMH, Augustinavicius JL, Causevic S, et al. A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Med. 2019; 17(1):17. doi: 10.1186/s12916-019-1250-8. DOI: https://doi.org/10.1186/s12916-019-1250-8

Scambler G. Health-related stigma. Sociol Health Illn. 2009;31(3):441-55. doi: 10.1111/j.1467-9566. 2009.01161.x. DOI: https://doi.org/10.1111/j.1467-9566.2009.01161.x

Downloads

Published

2023-06-19

How to Cite

1.
Thi Loan Khanh, Mai TLA, Phương Anh Hoang. Stigma among Parents of Children with Autism: An Integrative Review. PRIJNR [Internet]. 2023 Jun. 19 [cited 2024 Dec. 22];27(3):530-48. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/261650

Issue

Vol. 27 No. 3 (2023): July-September, 2023

Section

Original paper

Categories

License

Copyright (c) 2023 Pacific Rim International Journal of Nursing Research

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Copyright: The Pacific Rim International Journal of Nursing Research, Thailand Nursing & Midwifery Council has exclusive rights to publish, reproduce and distribute the manuscript and all contents therein.