Lived Experiences of Iranian Parents of Children with Autism Spectrum Disorder: A Systematic Review
-
Ehsan Jamshidian
,
Elahe Hojati Abed
,
Elahe Fathi Azar
,
Mozhdeh Hashemzadeh
,
Hooshang Mirzaie
,
Hossein Sourtiji
Abstract
Background: Autism is a lifelong condition that seriously affects many aspects of children's and families' lives. The experience attained by living with a child with autism can be a valuable source of information to provide support and satisfactory services to children with autism and their families. We aimed to investigate the lived experiences of Iranian parents of children with autism.
Methods: The search was conducted in PubMed, Web of Science, Embase, Google Scholar, CINAHL, PsychInfo, SID, and Magiran until Nov 2021. Two reviewers screened the articles, applied inclusion criteria, critically evaluated articles using the Critical Appraisal Skills Program (CASP), and extracted study details according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. Thematic synthesis was used to analyze included studies.
Results: From 2772 articles in the initial search, sixteen studies entered the final analysis. Four themes emerged, including treatment-related lived experience, individual lived experience, social lived experience, and occupational lived experience. Iranian parents of children with autism are confronted with negative experiences, including inaccurate diagnostic processes, lack of adequate support at the diagnosis time, low-quality treatment, psychological problems, and concern about the child's future. Also, Parent's experiences showed family problems, stigma, and problems with doing occupations.
Conclusion: Practitioners, policy-makers, and regulatory organizations should urgently consider issues mentioned in the parents' experiences to provide proper healthcare services for children with autism and their families.
1. Christensen D, Zubler J (2020). CE:From the CDC:Understanding Autism Spectrum Disorder. Am J Nurs, 120(10):30-7.
2. Samadi H, Samadi SA (2020). Understanding different aspects of caregiving for individuals with autism spectrum disorders (ASDs) a narrative review of the literature. Brain Sci, 10(8):557.
3. Mirzaie H, Jamshidian E, Hosseini SA (2018). Routines in families of children with Autism. Jrehab, 19(3):184-93.
4. Corcoran J, Berry A, Hill S (2015). The lived experience of US parents of children with autism spectrum disorders:a systematic review and meta-synthesis. J Intellect Disabil, 19(4):356-66.
5. Shorey S, Ng ED, Haugan G, Law E (2020). The parenting experiences and needs of Asian primary caregivers of children with autism:A meta-synthesis. Autism, 24(3):591-604.
6. DePape AM, Lindsay S (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res, 25(4):569-83.
7. Chamak B, Bonniau B, Oudaya L, Ehrenberg A (2011). The autism diagnostic experiences of French parents. Autism, 15(1):83-97.
8. Desai MU, Divan G, Wertz FJ, Patel V (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcult Psychiatry, 49(3-4):613-37.
9. Čolić M, Dababnah S, Garbarino N, Betz G (2019). Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review. Int J Dev Disabil, 68(1):1-13.
10. Al Khateeb JM, Kaczmarek L, Al Hadidi MS (2019). Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries:A comparative review. Autism, 23(7):1645-54.
11. Ooi KL, Ong YS, Jacob SA, Khan TM (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatr Dis Treat, 12:745-62.
12. Boshoff K, Bowen‐Salter H, Gibbs D, Phillips RL, Porter L, Wiles L (2021). A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children. Health Soc Care Community, 29(6):1668-82.
13. Boshoff K, Gibbs D, Phillips RL, Wiles L, Porter L (2016). Parents' voices:‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder. Child Care Health Dev, 42(6):784-97.
14. Zarafshan H, Mohammadi MR, Abolhassani F, Motevalian SA, Sepasi N, Sharifi V (2019). Current status of health and social services for children with autism in Iran:Parents' perspectives. Iran J Psychiatry, 14(1):76-83.
15. Critical Appraisal Skills Program (2018). Available from: https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist- 2018.pdf 2018.
16. Page MJ, McKenzie JE, Bossuyt PM, et al (2021). The PRISMA 2020 statement:an updated guideline for reporting systematic reviews. BMJ, 372:n71.
17. Thomas J, Harden A (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol, 8(1):45.
18. Samadi SA (2020). Parental beliefs and feelings about autism spectrum disorder in Iran. Int J Environ Res Public Health, 17(3):828.
19. Khougar A, Ranjbar H, Lotfei M, Hakimshoushtari M (2019). Lived experience of the social suffering of the parents with autism spectrum disorder (ASD) child. J Social Welfare Quarterly, 19(72):243-82.
20. Chimeh N, Pouretemad H, Khorramabadi R (2008). Problems and needs of mothers of children with autistic disorders:A qualitative study. Journal of Family Research, 3(3).
21. Shahrokhi H, Ghiasi A, Gholipour K, Fanid LM, Shamekhi HR, Iezadi S (2021). Considerations about the implementation of an autism screening program in Iran from the viewpoints of professionals and parents:a qualitative study. BMC Psychiatry, 21(1):55.
22. Abazari K, Ghamarani A, Abedi A, Faramarzi S (2017). Understanding the factors influence expressed emotion in mothers of children with autism. Journal of Qualitative Research in Health Sciences, 6(1):22-34.
23. Mohammadi F, Rakhshan M, Molazem Z, Zareh N (2018). Parental empowerment of the parents of children with autism:a qualitative study. Sadra Medical Sciences Journal, 6(4):261-74.
24. Aarabi MA, Abdi K, Khanjani MS (2021). Perceptions of the parents of children with autism spectrum disorders and healthcare providers on the challenges of using rehabilitation services in Iran. Iranian Rehabilitation Journal, 19(1):13-22.
25. Faraji-Khiavi F, Zahiri M, Amiri E, Dindamal B, Pirani N (2021). The experiences of families raising autistic children:a phenomenological study. J Educ Health Promot, 10:78.
26. Ramezanloo M, Abolmaali Alhosseini K, Bagheri F, Robatmili S (2020). Lived experience of mothers’ children with autism spectrum disorder:A phenomenological study. Psychology of Exceptional Individuals, 10(39):133-74.
27. Khara R, Kalankesh L, Shahrokhi H, Dastgiri S, Gholipour K, Feizi-Derakhshi M (2020). Identifying the needs of families of children with autism spectrum disorder from specialists and parents perspectives:a qualitative study. Iran J Psychiatry Behav Sci, 14(4):e107203.
28. Samadi SA, McConkey R, Kelly G (2011). The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Development Care, 182(11):1439-53.
29. Ebadi M, Samadi SA, Mardani‐Hamooleh M, Seyedfatemi N (2021). Living under psychosocial pressure:Perception of mothers of children with autism spectrum disorders. J Child Adolesc Psychiatr Nurs, 34(3):212-8.
30. Mohammadi F, Rakhshan M, Molazem Z, Zareh N (2018). Parental competence among parents with autistic children:A qualitative study. Nurs Midwifery Stud, 7(4):168-73.
31. Heydari A, Shahidi LH, Mohammadpour A (2015). Spiritual journey in mothers’ lived experiences of caring for children with autism spectrum disorders. Glob J Health Sci, 7(6):79-87.
32. Ganjeh F, Fallahi-Khoshknab M, Zarea K, Mohammadi E, Riahi F (2020). Parental concerns about the future of children with autism:A qualitative study in Iran. IJAM, 11(4):739-46.
33. Yassıbaş U, Çolak A (2019). An in-depth analysis of the life experiences of parents with children with autism spectrum disorder. Education and Science, 44(198):435-67.
34. Mitchell C, Holdt N (2014). The search for a timely diagnosis:Parents’ experiences of their child being diagnosed with an Autistic Spectrum Disorder. J Child Adolesc Ment Health, 26(1):49-62.
35. Locke J, Ibanez LV, Posner E, Frederick L, Carpentier P, Stone WL (2020). Parent perceptions about communicating with providers regarding early autism concerns. Pediatrics, 145(Suppl 1):S72-80.
36. Crane L, Chester JW, Goddard L, Henry LA, Hill E (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2):153-62.
37. Eggleston MJF, Thabrew H, Frampton CMA, Eggleston KHF, Hennig SC (2019). Obtaining an autism spectrum disorder diagnosis and supports:New Zealand parents’ experiences. Res Autism Spectr Disord, 62:18-25.
38. Osborne LA, Reed P (2008). Parents' perceptions of communication with professionals during the diagnosis of autism. Autism,12(3):309-24.
39. Schnabel A, Youssef GJ, Hallford DJ, et al (2020). Psychopathology in parents of children with autism spectrum disorder:A systematic review and meta-analysis of prevalence. Autism, 24(1):26-40.
40. Bernier AS, McCrimmon AW (2021). Attitudes and perceptions of Muslim parents toward their children with autism:A systematic review. Rev J Autism Dev Disord, 1-14.
41. Leedham AT, Thompson AR, Freeth M (2020). A thematic synthesis of siblings' lived experiences of autism: Distress, responsibilities, compassion and connection. Res Dev Disabil, 97:103547.
42. Watson L, Hanna P, Jones CJ (2021). A systematic review of the experience of being a sibling of a child with an autism spectrum disorder. Clin Child Psychol Psychiatry, 26(3):734-49.
43. Gau SS-F, Chou M-C, Chiang H-L, et al (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Res Autism Spectr Disord, 6(1):263-70.
44. Rezae M, McMeekin D, Tan T, Krishna A, Lee H, Falkmer T (2021). Public transport planning tool for users on the autism spectrum: From concept to prototype. Disabil Rehabil Assist Technol, 16(2):177-87.
45. Angell AM, Solomon O (2018). Understanding parents' concerns about their children with autism taking public school transportation in Los Angeles County. Autism, 22(4):401-13.
46. Naik SJ, Vajaratkar PV (2019). Understanding parents' difficulties in executing activities of daily living of children with autism spectrum disorder:A qualitative descriptive study. Indian J Occup Ther, 51(3):107.
47. Mazzone L, Postorino V, Siracusano M, Riccioni A, Curatolo P (2018). The relationship between sleep problems, neurobiological alterations, core symptoms of autism spectrum disorder, and psychiatric comorbidities. J Clin Med, 7(5):102.
48. Boyd KA, Goodwin DL (2019). “It’s hard when people try and get their kids away from Cole”:A family’s experiences of (in) dignity in leisure settings. Adapt Phys Activ Q, 36(2):223-41.
49. Milosevic S, Brookes‐Howell L, Randell E, et al (2022). Understanding the support experiences of families of children with autism and sensory processing difficulties:A qualitative study. Health Expect, 25(3):1118- 30.
50. Lovell B, Elder GJ, Wetherell MA (2021). Sleep disturbances and physical health problems in caregivers of children with ASD. Res Dev Disabil, 113:103932.
51. Gnanasekaran S, Choueiri R, Neumeyer A, Ajari O, Shui A, Kuhlthau K (2016). Impact of employee benefits on families with children with autism spectrum disorders. Autism, 20(5):616-22.
52. Haq A, Santoso T (2020). Occupational Participation of Mothers of Children with Autism Spectrum Disorder . Ann Physiother Occup Ther, 3(4): 1-8.
2. Samadi H, Samadi SA (2020). Understanding different aspects of caregiving for individuals with autism spectrum disorders (ASDs) a narrative review of the literature. Brain Sci, 10(8):557.
3. Mirzaie H, Jamshidian E, Hosseini SA (2018). Routines in families of children with Autism. Jrehab, 19(3):184-93.
4. Corcoran J, Berry A, Hill S (2015). The lived experience of US parents of children with autism spectrum disorders:a systematic review and meta-synthesis. J Intellect Disabil, 19(4):356-66.
5. Shorey S, Ng ED, Haugan G, Law E (2020). The parenting experiences and needs of Asian primary caregivers of children with autism:A meta-synthesis. Autism, 24(3):591-604.
6. DePape AM, Lindsay S (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res, 25(4):569-83.
7. Chamak B, Bonniau B, Oudaya L, Ehrenberg A (2011). The autism diagnostic experiences of French parents. Autism, 15(1):83-97.
8. Desai MU, Divan G, Wertz FJ, Patel V (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcult Psychiatry, 49(3-4):613-37.
9. Čolić M, Dababnah S, Garbarino N, Betz G (2019). Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review. Int J Dev Disabil, 68(1):1-13.
10. Al Khateeb JM, Kaczmarek L, Al Hadidi MS (2019). Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries:A comparative review. Autism, 23(7):1645-54.
11. Ooi KL, Ong YS, Jacob SA, Khan TM (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatr Dis Treat, 12:745-62.
12. Boshoff K, Bowen‐Salter H, Gibbs D, Phillips RL, Porter L, Wiles L (2021). A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children. Health Soc Care Community, 29(6):1668-82.
13. Boshoff K, Gibbs D, Phillips RL, Wiles L, Porter L (2016). Parents' voices:‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder. Child Care Health Dev, 42(6):784-97.
14. Zarafshan H, Mohammadi MR, Abolhassani F, Motevalian SA, Sepasi N, Sharifi V (2019). Current status of health and social services for children with autism in Iran:Parents' perspectives. Iran J Psychiatry, 14(1):76-83.
15. Critical Appraisal Skills Program (2018). Available from: https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist- 2018.pdf 2018.
16. Page MJ, McKenzie JE, Bossuyt PM, et al (2021). The PRISMA 2020 statement:an updated guideline for reporting systematic reviews. BMJ, 372:n71.
17. Thomas J, Harden A (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol, 8(1):45.
18. Samadi SA (2020). Parental beliefs and feelings about autism spectrum disorder in Iran. Int J Environ Res Public Health, 17(3):828.
19. Khougar A, Ranjbar H, Lotfei M, Hakimshoushtari M (2019). Lived experience of the social suffering of the parents with autism spectrum disorder (ASD) child. J Social Welfare Quarterly, 19(72):243-82.
20. Chimeh N, Pouretemad H, Khorramabadi R (2008). Problems and needs of mothers of children with autistic disorders:A qualitative study. Journal of Family Research, 3(3).
21. Shahrokhi H, Ghiasi A, Gholipour K, Fanid LM, Shamekhi HR, Iezadi S (2021). Considerations about the implementation of an autism screening program in Iran from the viewpoints of professionals and parents:a qualitative study. BMC Psychiatry, 21(1):55.
22. Abazari K, Ghamarani A, Abedi A, Faramarzi S (2017). Understanding the factors influence expressed emotion in mothers of children with autism. Journal of Qualitative Research in Health Sciences, 6(1):22-34.
23. Mohammadi F, Rakhshan M, Molazem Z, Zareh N (2018). Parental empowerment of the parents of children with autism:a qualitative study. Sadra Medical Sciences Journal, 6(4):261-74.
24. Aarabi MA, Abdi K, Khanjani MS (2021). Perceptions of the parents of children with autism spectrum disorders and healthcare providers on the challenges of using rehabilitation services in Iran. Iranian Rehabilitation Journal, 19(1):13-22.
25. Faraji-Khiavi F, Zahiri M, Amiri E, Dindamal B, Pirani N (2021). The experiences of families raising autistic children:a phenomenological study. J Educ Health Promot, 10:78.
26. Ramezanloo M, Abolmaali Alhosseini K, Bagheri F, Robatmili S (2020). Lived experience of mothers’ children with autism spectrum disorder:A phenomenological study. Psychology of Exceptional Individuals, 10(39):133-74.
27. Khara R, Kalankesh L, Shahrokhi H, Dastgiri S, Gholipour K, Feizi-Derakhshi M (2020). Identifying the needs of families of children with autism spectrum disorder from specialists and parents perspectives:a qualitative study. Iran J Psychiatry Behav Sci, 14(4):e107203.
28. Samadi SA, McConkey R, Kelly G (2011). The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Development Care, 182(11):1439-53.
29. Ebadi M, Samadi SA, Mardani‐Hamooleh M, Seyedfatemi N (2021). Living under psychosocial pressure:Perception of mothers of children with autism spectrum disorders. J Child Adolesc Psychiatr Nurs, 34(3):212-8.
30. Mohammadi F, Rakhshan M, Molazem Z, Zareh N (2018). Parental competence among parents with autistic children:A qualitative study. Nurs Midwifery Stud, 7(4):168-73.
31. Heydari A, Shahidi LH, Mohammadpour A (2015). Spiritual journey in mothers’ lived experiences of caring for children with autism spectrum disorders. Glob J Health Sci, 7(6):79-87.
32. Ganjeh F, Fallahi-Khoshknab M, Zarea K, Mohammadi E, Riahi F (2020). Parental concerns about the future of children with autism:A qualitative study in Iran. IJAM, 11(4):739-46.
33. Yassıbaş U, Çolak A (2019). An in-depth analysis of the life experiences of parents with children with autism spectrum disorder. Education and Science, 44(198):435-67.
34. Mitchell C, Holdt N (2014). The search for a timely diagnosis:Parents’ experiences of their child being diagnosed with an Autistic Spectrum Disorder. J Child Adolesc Ment Health, 26(1):49-62.
35. Locke J, Ibanez LV, Posner E, Frederick L, Carpentier P, Stone WL (2020). Parent perceptions about communicating with providers regarding early autism concerns. Pediatrics, 145(Suppl 1):S72-80.
36. Crane L, Chester JW, Goddard L, Henry LA, Hill E (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2):153-62.
37. Eggleston MJF, Thabrew H, Frampton CMA, Eggleston KHF, Hennig SC (2019). Obtaining an autism spectrum disorder diagnosis and supports:New Zealand parents’ experiences. Res Autism Spectr Disord, 62:18-25.
38. Osborne LA, Reed P (2008). Parents' perceptions of communication with professionals during the diagnosis of autism. Autism,12(3):309-24.
39. Schnabel A, Youssef GJ, Hallford DJ, et al (2020). Psychopathology in parents of children with autism spectrum disorder:A systematic review and meta-analysis of prevalence. Autism, 24(1):26-40.
40. Bernier AS, McCrimmon AW (2021). Attitudes and perceptions of Muslim parents toward their children with autism:A systematic review. Rev J Autism Dev Disord, 1-14.
41. Leedham AT, Thompson AR, Freeth M (2020). A thematic synthesis of siblings' lived experiences of autism: Distress, responsibilities, compassion and connection. Res Dev Disabil, 97:103547.
42. Watson L, Hanna P, Jones CJ (2021). A systematic review of the experience of being a sibling of a child with an autism spectrum disorder. Clin Child Psychol Psychiatry, 26(3):734-49.
43. Gau SS-F, Chou M-C, Chiang H-L, et al (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Res Autism Spectr Disord, 6(1):263-70.
44. Rezae M, McMeekin D, Tan T, Krishna A, Lee H, Falkmer T (2021). Public transport planning tool for users on the autism spectrum: From concept to prototype. Disabil Rehabil Assist Technol, 16(2):177-87.
45. Angell AM, Solomon O (2018). Understanding parents' concerns about their children with autism taking public school transportation in Los Angeles County. Autism, 22(4):401-13.
46. Naik SJ, Vajaratkar PV (2019). Understanding parents' difficulties in executing activities of daily living of children with autism spectrum disorder:A qualitative descriptive study. Indian J Occup Ther, 51(3):107.
47. Mazzone L, Postorino V, Siracusano M, Riccioni A, Curatolo P (2018). The relationship between sleep problems, neurobiological alterations, core symptoms of autism spectrum disorder, and psychiatric comorbidities. J Clin Med, 7(5):102.
48. Boyd KA, Goodwin DL (2019). “It’s hard when people try and get their kids away from Cole”:A family’s experiences of (in) dignity in leisure settings. Adapt Phys Activ Q, 36(2):223-41.
49. Milosevic S, Brookes‐Howell L, Randell E, et al (2022). Understanding the support experiences of families of children with autism and sensory processing difficulties:A qualitative study. Health Expect, 25(3):1118- 30.
50. Lovell B, Elder GJ, Wetherell MA (2021). Sleep disturbances and physical health problems in caregivers of children with ASD. Res Dev Disabil, 113:103932.
51. Gnanasekaran S, Choueiri R, Neumeyer A, Ajari O, Shui A, Kuhlthau K (2016). Impact of employee benefits on families with children with autism spectrum disorders. Autism, 20(5):616-22.
52. Haq A, Santoso T (2020). Occupational Participation of Mothers of Children with Autism Spectrum Disorder . Ann Physiother Occup Ther, 3(4): 1-8.
| Files | ||
| Issue | Vol 52 No 8 (2023) | |
| Section | Review Article(s) | |
| DOI | https://doi.org/10.18502/ijph.v52i8.13401 | |
| Keywords | ||
| Autism Parents Qualitative Systematic review | ||
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How to Cite
1.
Jamshidian E, Hojati Abed E, Fathi Azar E, Hashemzadeh M, Mirzaie H, Sourtiji H. Lived Experiences of Iranian Parents of Children with Autism Spectrum Disorder: A Systematic Review. Iran J Public Health. 2023;52(8):1626-1641.
