Document Type : Original Article
Authors
1 Social Determinants of Health Research Center, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran, Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
2 Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
3 Department of Rehabilitation Management, Rehabilitation Faculty, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
4 Department of Health Services Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran
Abstract
BACKGROUND: Conditions and needs of autistic children have impacts on both the children and the
family members who have crucial roles in raising the child. The prevalence of autism is increasing,
and this fact makes it necessary to focus more on experiences of parents who have children with
autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who
have autistic children.
MATERIALS AND METHODS: The present study was a qualitative research with phenomenology
approach which was conducted using content analysis approach. Participants were 14 parents with
ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the
required data, semi‑structured interviews were formed. Data analysis was performed by Colaizzi’s
seven‑step method.
RESULTS: Fifty‑four conceptual codes were extracted from interviews of ASD children parents.
Parents of these children had two main experiences: first family related and second education and
treatment problems. Family problems included three categories (financial, psychological, and family
relationships). Education and treatment was categorized into three (schooling, transporting, and
quality in facilities).
CONCLUSIONS: Problems mentioned by parents of autistic children highlight the need for providing
training and counseling services as well as emotional supports from both society and government.
Planning and implementing supportive plans empower parents to strategically face problems and
eventually improve their life quality and mutual understanding.
Keywords
- Volkmar FR. Autism and Pervasive Developmental Disorders.
2nd ed. Cambridge: Cambridge University Press; 2007. - 2. Baio J. Prevalence of autism spectrum disorders: Autism and
developmental disabilities monitoring network, 14 sites, United
States, 2008. Morbidity and mortality weekly report. Surveillance
summaries. Centers Dis Control Prevent 2012;61:1‑19.
3. Sevlever M, Gillis JM. An examination of the state of imitation
research in children with autism: Issues of definition and
methodology. Res Dev Disabil 2010;31:976‑84.
4. Steiner AM, Goldsmith TR, Snow AV, Chawarska K. Practitioner’s
guide to assessment of autism spectrum disorders in infants and
toddlers. J Autism Dev Disord 2012;42:1183‑96.
5. Järvinen‑Pasley A, Heaton P. Evidence for reduced
domain‑specificity in auditory processing in autism. Dev Sci
2007;10:786‑93.
6. Ronemus M, Iossifov I, Levy D, Wigler M. The role of de novo
mutations in the genetics of autism spectrum disorders. Nature
Rev Gene; 2014;15:133‑40.
7. Heidari S, Sajjadian I, Heidarian A. The effectiveness of acceptance
and commitment Group rherapy on psychological distress and
negative automatic thoughts in mothers of children with autism
spectrum disorder. J Fund Ment Health 2016;18:491‑9.
8. Zhang R, Zhang HF, Han JS, Han SP. Genes related to oxytocin
and arginine‑vasopressin pathways: Associations with autism
spectrum disorders. Neurosci Bull 2017;33:238‑46.
9. Samadi SA, Mahmoodizadeh A, McConkey R. A national study
of the prevalence of autism among five‑yearold children in Iran.
Autism 2012;16:5‑14.
10. ChristensenDL. Prevalence and characteristics of autism spectrum
disorder among children aged 8 years‑autism and developmental
disabilities monitoring network, 11 sites, United States, 2012.
MMWR Surveillance Summaries 2016;65:1‑23.
11. Amiet C, Gourfinkel‑An I, Bouzamondo A, Tordjman S, Baulac M,
Lechat P, et al. Epilepsy in autism is associated with intellectual
disability and gender: Evidence from a meta‑analysis. Biol
Psychiatry 2008;64:577‑82.
12. AaghariNekah SM, Afrooz GA, Bazargan A, Shokohi M.
Probe in play of autistic children through of mothers’ lived
experiences: A case of a mixed method research. Rev Psicol Educ
2011;41:28‑411.
13. Meirsschaut M, Roeyers H, Warreyn P. Parenting in families with
a child with autism spectrum disorder and a typically developing
child: Mothers’ experiences and cognitions. RASD 2011;4:661‑9.
14. Johnson E, Hastings RP. Facilitating factors and barriers to
the mplementation of intensive home‑based behavioural
intervention for young children with autism. Child Care Health
Dev 2002;28:123‑9.
15. Chimeh N, Pouretemad HR, Khoramabadi R. Need assessment
of mothers with autistic children. J Fam Res 2007;3:697‑707.
16. McGill P, Papachristoforou E, Cooper V. Support for family carers
of children and young people with developmental disabilities and
challenging behaviour. Child Care Health Dev 2006;32:159‑65.
17. Jones L, Hastings RP, Totsika V, Keane L, Rhule N. Child bihavior
problems and parental well‑being in families of children with
autism: The mediating role of mindfulness and acceptance. AJIDD
2014;119:171‑581.
18. Weiss JA, Cappadocia MC, MacMullin JA, Viecili M, Lunsky Y.
The impact of child problem behaviors of children with ASD
on parent mental health: The mediating role of acceptance and
empowerment. Autism 2012;16:261‑74.
19. Rivard M, Terroux A, Boursier CP, Mercier M. Determinants of
Stress in parents of children with autism spectrum disorders.
J Autism Dev Disord 2014;44:1609‑20.
20. Bayrami M, Hassimi Nosratabad T, Besharat R, Movahedi Y,
Kohpayma S. The study of the components of neuroticism among
parents of autistic children, mental retarded and normal in the
city of Tabriz. Excep Educ 2014;9:17‑27.
21. Bashir A, Bashir U, Lone A, Ahmad Z. Challenges faced by
families of autistic children. IJIRI 2014;2:64‑8.
22. Dababnah S, Parish LS. At a moment, you could collapse: Raising
children with autism in the West Bank. Child Youth Serv Rev
2013;35:1670‑8.
23. Morrow R, Rodriguez A, King N. Colaizzi’s descriptive
phenomenological method. Psychologist 2015;28:643‑4.
24. Guba EG, Lincoln YS. Competing paradigms in qualitative
research. In: Handbook of Qualitative Research. London CA:
Sage; 1994.
25. Kheir MN, Ghoneim MO, Sandridge LA, Hyder AS, Ismail M,
AL‑Rawi F. Concerns and considerations among caregivers of a
child with autism in Qatar. BMC Res Notes 2012;5:290.
26. Sharpe DL, Baker DL. Financial Issues Associated with Having
a Child with Autism. J Fam Econ Issues 2007;28:247‑64.
27. Koohkan E, Yousofian S, Rajabi G, Zare‑Farashbandi F. Health
information needs of families at childhood cancer: A qualitative
study. J Educ Health Promot 2019;8:246.
28. Poretemad HR, Khoushabi K, Afshari R, Moradi S. Coping
strategies and mental health in autistic children mothers. J Fam
Res 2006;2:285‑92.
29. Mazurek MO, Handen BL, Wodka EL, Nowinski L, Butter E,
Engelhardt CR. Age at first autism spectrum disorder diagnosis:
The role of birth cohort, demographic factors, and clinical features.
J Dev Behav Pediatr 2014;35:561‑9.
30. Dadipoor S, Haghighi H, Madani A, Ghanbarnejad A, Shojaei F,
Hesam A, et al. Investigating the mental health and coping
strategies of parents with major thalassemic children in Bandar
Abbas. J Edu Health Promot 2015;4:59.
31. Freedman B, Kalb LG, Zaboltsky B, Stuart EA. Relationship status
among parents of children with autism spectrum disorders:
A population‑based study. Autism Dev Disord 2012;42:539‑48.
32. Hartley SL, Barker ET, Seltzer MM, Floyd F, Greenberg J,
Orsmond G, et al. The relative risk and timing of divorce in
families of children with an autism spectrum disorder. J Fam
Psychol 2010;24:449‑57.
33. Hoppe SE. Parent perceptions: Communication, interaction, and
behavior in autism. teaching. Excep Children Plus 2005;1:14‑25.
34. Balance A, Riley RA, Goldsmith RT. Autism Spectrum Disorders:
A Lifespan Perspective. USA: Western Michigan University; 2008.
35. AhmadiA, SharifiE, Azizi‑Zalani H, Bolouk S, Amrai K. The needs
of Iranian families of children with autism spectrum disorder,
cross‑cultural study. Procedia Soc Behav Sci 2011;15:321‑6.
)