Volume 22, Issue 3 (Autumn 2021)                   jrehab 2021, 22(3): 260-277 | Back to browse issues page


XML Persian Abstract Print


Download citation:
BibTeX | RIS | EndNote | Medlars | ProCite | Reference Manager | RefWorks
Send citation to:

Aarabi M A, Abdi K, Khanjani M S. Challenges of Accessing and Using Rehabilitation Services in People With Autism Spectrum Disorder: A Systematic Review. jrehab 2021; 22 (3) :260-277
URL: http://rehabilitationj.uswr.ac.ir/article-1-2879-en.html
1- Department of Rehabilitation Management, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
2- Department of Rehabilitation Management, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran. , k55abdi@yahoo.com
3- Department of Counseling, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
Full-Text [PDF 3784 kb]   (884 Downloads)     |   Abstract (HTML)  (1294 Views)
Full-Text:   (1502 Views)
Introduction
utism Spectrum Disorder (ASD) is a group of pervasive neurodevelopmental disorders characterized by moderate to severe impairment in social skills, socialization, repetitive and expressive language, and repetitive and stereotyped behaviors and interests [1 ,2 ,3]. Evidence shows that the prevalence of ASD is increasing [4] with an average annual increase of 10.9%: the fastest growth rate among other disabilities since 2009 [5]. In the United States, its prevalence is 1 in 54 healthy children [6]. ASD can be a costly disorder throughout a person’s life. Due to its prevalence and range of behavioral needs and characteristics of patients, rehabilitation is necessary to teach social interactions and communication skills to them and prevent the progression or exacerbation of behavioral deficits [7]. Early diagnosis and treatment are some of the most critical factors in optimizing the outcome of rehabilitation; diagnosis is a prerequisite for access of families to early interventions [8]. There are several rehabilitation interventions for patients with ASD. These people need lifelong support and strive for employment, independent living, and socialization [9]. On the other hand, rehabilitation interventions require the use of appropriate facilities and structures such as human resources, financial resources and equipment, expert support, physical space, and also the cooperation of families, especially parents [10].
As mentioned above, one of the essential needs of ASD patients and their families is to use rehabilitation services to improve their performance in said areas. However, access to and use rehabilitation services is challenging for these individuals [11, 12, 13]. Some health care providers are not ready for their clients. Some therapists report a lack of skills and tools needed to care for people with ASD [14]. The present study aims to systematically review and comprehensively classify the challenges of access to rehabilitation services for patients with ASD. It is expected that this study can provide the necessary evidence for policymakers and managers involved in the use of rehabilitation services for people with ASD to improve the living conditions of these people by solving the challenges and ultimately help improve their quality of life.
Materials and Methods
This research is a systematic review study. A search was conducted on articles published in Persian and English from 2010 to 2020 on the challenges of accessing and using rehabilitation services for people with ASD in online databases of Google Scholar, PubMed, Scopus, ProQuest, Science direct, SID, and MagIran using the keywords of “challenge”, “utilization”, “accessibility”, “rehabilitation”, “healthcare”, and “autism”. The initial search yielded 142 articles. After reviewing their titles, 102 articles were excluded because they were irrelevant or duplicates, and 40 remained. Finally, by examining the quality, methodology, and abstracts of the articles and considering the inclusion criteria, 14 studies were selected (Figure 1).

A Table was prepared containing the authors’ names, study country, study time, the title of study, type of study, the purpose of study, target group, number of samples, and study results (Table 1).




The inclusion criteria were publication in reputable journals, in English or Persian, available in full-text, and publication during 2010-2020; the exclusion criterion was a letter to the editor.
Results
This study investigated the challenges of accessing rehabilitation and healthcare services for patients with ASD. Findings showed problems in the executive and information structures in rehabilitation and treatment programs for these people. Establishing a systematic monitoring system is recommended in response to these challenges. Neglecting the structure and policy of rehabilitation puts systematic rehabilitation policies in front of the implementers. On the other hand, the challenges of poor knowledge and attitudes, and ultimately the defect in the information system, are evident at various levels, such as rehabilitation service providers, parents, and the community. This condition has led to the development or exacerbation of problems in other areas, such as family despair, poor teamwork, and no commitment to professional ethics.
The findings of Płatos and Pisula in 2019 showed that despite the growing number of adolescents and young adults with ASD, there is little information about the necessary services and the existing barriers. In their study, the barriers that parents stated included difficulty in accessing services, not being eligible to receive services, difficult access to information about services, and expensive costs of services [24]. Another study reported that people with ASD had problems with the use of services, lack of regular service delivery, insufficient insurance coverage, and lack of parental involvement in childcare. These problems were more common in people with ASD than in people with other developmental and mental disorders [13]. Poor access to and use of rehabilitation services create many challenges for people with disabilities and service providers, especially in rural areas where there is a shortage of human resources and rehabilitation equipment [2728]. The most critical challenges were as follows:
• Challenges related to the high costs of services and the lack of a systematic support system: High cost of providing services [15], insufficient insurance coverage [13], lack of government support [26], and concerns about costs [21];
• Challenges related to rehabilitation services: Lack of availability of some essential and essential services such as occupational therapy [19], lack of access to specialists in ASD [26], and lack of special services, especially in rural areas [18];
• Challenges related to poor knowledge and attitude: Lack of knowledge of the signs and symptoms of ASD [26], lack of information of parents about how to access the required services [15], and lack of knowledge about ASD [22];
• Challenges related to the structure of rehabilitation programs: Problems in using services, such as lack of maintaining services [13], structure and maintenance of ASD services [29], and heterogeneity of services offered in different centers [15];
• Challenges related to communication between parents and service providers: Lack of parental involvement in childcare [13], difficulty communicating with service providers [21], and poor cooperation of parents and providers in planning, implementing, and evaluating services [15];
• Challenges related to screening, diagnosis, and rehabilitation: Inefficiency in diagnosing and screening people with disabilities [17], and diagnosis and treatment process [29];
• Other challenges: Defects in rehabilitation monitoring [17] and low human resources of service providers [29].
It is hoped that the results of this study help policymakers, managers, and planners in the field of rehabilitation of ASD people to help them achieve their human rights in the field of health and rehabilitation like other people in the community by reforming executive structures and developing comprehensive rehabilitation programs.
Discussion and Conclusion
Because of the nature of ASD, families, and service providers have many challenges in accessing and using rehabilitation services. These services are not provided in the entire life of people with ASD. Recognition of these challenges helps rehabilitation program managers and policymakers take more effective steps to provide services to people with ASD and their families. They should pay more attention to existing capacities, adopt, and implement the necessary programs to lead to basic measures to improve the rehabilitation services needed by people with ASD. Besides, to increase the productivity of rehabilitation services for these people, we need short-term, medium-term, and long-term planning. One of the limitations of this study is that other language articles are not reviewed due to the lack of proficiency in other languages.

Ethical Considerations
Compliance with ethical guidelines

This study was approved by the Ethics Committee of the University of Social Welfare and Rehabilitation Sciences (Code: IR.USWR.REC.1399.144).

Funding
This article has been extracted from MA. thesis of the first author at the Department of Rehabilitation Management, University of Social Welfare and Rehabilitation Sciences.

Authors' contributions
Idea, conceptualization, editing, and finalizing: Mahta Alsadat Aarabi, Kianoush Abdi; Writing: Mahta Alsadat Aarabi; Supervision and management: Kianoush Abdi, Mohammad Saeed Khanjani.

Conflict of interest
The authors declared no conflict of interest.


References
  1. Karimzadeh M, Baneshi AR, Dehghan Tezerjani M, Tayyebi Sough Z. Normalization of pervasive developmental disorder screening test. Archives of Rehabilitation. 2018; 19(2):116-25. [DOI:10.32598/rj.19.2.116]
  2. Pennington ML, Cullinan D, Southern LB. Defining autism: Variability in state education agency definitions of and evaluations for autism spectrum disorders. Autism Research and Treatment. 2014; 2014:327271. [DOI:10.1155/2014/327271] [PMID] [PMCID]
  3. Aarabi MA, Abdi K, Khanjani MS. Letter to editor: COVID-19 and mental health of people with autism spectrum disorder and their families; What can be done? Middle East J Rehabil Health Stud. 2021; 8(2):e112188. [DOI:10.5812/mejrh.112188]
  4. Lazar M, Miles LM, Babb JS, Donaldson JB. Axonal deficits in young adults with high functioning autism and their impact on processing speed. NeuroImage Clinical. 2014; 4:417-25. [DOI:10.1016/j.nicl.2014.01.014] [PMID] [PMCID]
  5. Sarabi Jamab M, Hasanadadi A, Mashhadi A, Asgharinekah M. [The effects of parent education and skill training program on stress of mothers of children with autism (Persian)]. Journal of Family Research. 2012; 8(31):261-72. https://jfr.sbu.ac.ir/article_96144.html
  6. Volkmar FR, Lord C, Bailey A, Schultz RT, Klin A. Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines. 2004; 45(1):135-70. [DOI:10.1046/j.0021-9630.2003.00317.x] [PMID]
  7. Aarabi M, Abdi K, Khanjani M. Using of rehabilitation services, the main concern of autism spectrum disorder: what can be done? Journal of Rehabilitation Sciences & Research. 2020; 7(4):189-90. https://jrsr.sums.ac.ir/article_47289_40def5e07c420efe8b5d67b207a0bf86.pdf
  8. Mirzaie H, Jamshidian E, Hosseini SA. [Routnes in families of children with autsm (Persian)]. Archine of Rehabilitation. 2018; 19(3):184-93. [DOI:10.32598/rj.19.3.184]
  9. 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 Surveillance Summaries. 2018; 67(6):1-23. [DOI:10.15585/mmwr.ss6706a1] [PMCID] [PMID]
  10. Li HJ, Chen CY, Tsai CH, Kuo CC, Chen KH, Chen KH, et al. Utilization and medical costs of outpatient rehabilitation among children with autism spectrum conditions in Taiwan. BMC Health Services Research. 2019; 19(1):354. [DOI:10.1186/s12913-019-4193-z] [PMID] [PMCID]
  11. Razavi F, Pourmohamadreza-Tajrishi M, Haghgoo H, Bakhshi E, Tavakoli S, Miri SMA. Relationship between executive functions and pragmatic language in children with autism spectrum disorders. Iranian Rehabilitation Journal. 2019; 17(3):225-34. [DOI:10.32598/irj.17.3.225]
  12. McPherson AC, Perez A, Buchholz A, Forhan M, Ball GDC. “It’s not a simple answer”. A qualitative study to explore how healthcare providers can best support families with a child with autism spectrum disorder and overweight or obesity. Disability and Rehabilitation. 2021; 1-7. [DOI:10.1080/09638288.2020.1867909] [PMID]
  13. Kodak T, Bergmann S. Autism spectrum disorder: Characteristics, associated behaviors, and early intervention. Pediatric Clinics of North America. 2020; 67(3):525-35. [DOI:10.1016/j.pcl.2020.02.007] [PMID]
  14. Park K. Park's Textbook of Preventive and Social Medicine. Jabalpur: Banarsidas Bhanot Publishers; 2009. https://books.google.com/books?id=SymHtAEACAAJ&dq=
  15. Ramshini M, Hasanzadeh S, Afroz G A, Hashemi Razini H. [The effect of family-centered nature therapy on children with autism spectrum disorder (Persian)]. Archive of Rehabilitation. 2018; 19(2):150-9. [DOI:10.32598/rj.19.2.150]
  16. Klin A, Klaiman C, Jones W. Reducing age of autism diagnosis: developmental social neuroscience meets public health challenge. Revista de Neurologia. 2015; 60 Suppl 1(0):S3-11. [DOI:10.33588/rn.60S01.2015019] [PMID] [PMCID]
  17. Mazza M, Pino MC, Vagnetti R, Filocamo A, Attanasio M, Calvarese A, et al. Intensive intervention for adolescents with autism spectrum disorder: Comparison of three rehabilitation treatments. International Journal of Psychiatry in Clinical Practice. 2020; 25(1):28-36. [DOI:10.1080/13651501.2020.1800042] [PMID]
  18. Valentine K. A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science & Medicine. 2010; 71(5):950-7. [DOI:10.1016/j.socscimed.2010.06.010] [PMID]
  19. Nicolaidis C, Raymaker D, McDonald K, Dern S, Boisclair WC, Ashkenazy E, et al. Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine. 2013; 28(6):761-9. [DOI:10.1007/s11606-012-2262-7] [PMID] [PMCID]
  20. Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AE, et al. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism. 2015; 19(7):824-31. [DOI:10.1177/1362361315576221] [PMID] [PMCID]
  21. Vohra R, Madhavan S, Sambamoorthi U, St Peter C. Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 2014; 18(7):815-26. [DOI:10.1177/1362361313512902] [PMID] [PMCID]
  22. Zerbo O, Massolo ML, Qian Y, Croen LA. A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. Journal of Autism and Developmental Disorders. 2015; 45(12):4002-14. [DOI:10.1007/s10803-015-2579-2] [PMID]
  23. Mazurek MO, Harkins C, Menezes M, Chan J, Parker RA, Kuhlthau K, et al. Primary care providers’ perceived barriers and needs for support in caring for children with autism. The Journal of Pediatrics. 2020; 221:240-5.e1. [DOI:10.1016/j.jpeds.2020.01.014] [PMID]
  24. Babatin AM, Alzahrani BS, Jan FM, Alkarimi EH, Jan MM. The availability of services for children with autism spectrum disorder in a Saudi population. Neurosciences. 2016; 21(3):223-6. [DOI:10.17712/nsj.2016.3.20150597] [PMID] [PMCID]
  25. Ahmadi A, Zalani HA, Amrai K. The needs of Iranian families of children with autism spectrum disorder, cross-cultural study. Procedia-Social and Behavioral Sciences. 2011; 15:321-6. [DOI:10.1016/j.sbspro.2011.03.094]
  26. Zablotsky B, Pringle BA, Colpe LJ, Kogan MD, Rice C, Blumberg SJ. Service and treatment use among children diagnosed with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics. 2015; 36(2):98-105. [DOI:10.1097/DBP.0000000000000127] [PMID] [PMCID]
  27. Abdi K, Arab M, Rashidian A, Kamali M, Khankeh HR, Farahani FK. Exploring barriers of the health system to rehabilitation services for people with disabilities in Iran: A qualitative study. Electronic Physician. 2015; 7(7):1476-85. [DOI:10.19082/1476] [PMID] [PMCID]
  28. Dern S, Sappok T. Barriers to healthcare for people on the autism spectrum. Advances in Autism. 2016; 2(1):2-11. [DOI:10.1108/AIA-10-2015-0020]
  29. Tekola B, Baheretibeb Y, Roth I, Tilahun D, Fekadu A, Hanlon C, et al. Challenges and opportunities to improve autism services in low-income countries: Lessons from a situational analysis in Ethiopia. Global Mental Health (Cambridge, England). 2016; 3:e21. [DOI:10.1017/gmh.2016.17] [PMID] [PMCID]
  30. Raymaker DM, McDonald KE, Ashkenazy E, Gerrity M, Baggs AM, Kripke C, et al. Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism. 2017; 21(8):972-84. [DOI:10.1177/1362361316661261] [PMID] [PMCID]
  31. Anderson C, Lupfer A, Shattuck PT. Barriers to receipt of services for young adults with autism. Pediatrics. 2018; 141(Suppl 4):S300-s5. [DOI:10.1542/peds.2016-4300G] [PMID]
  32. Jones AP. Caregivers’ challenges in accessing services for children with autism [PhD. dissertation]. Minneapolis: Walden University; 2019. https://www.proquest.com/openview/fd8a300ea844da1fcbac12e929e3fcc7/1?pq-origsite=gscholar&cbl=18750&diss=y
  33. Płatos M, Pisula E. Service use, unmet needs, and barriers to services among adolescents and young adults with autism spectrum disorder in Poland. BMC Health Services Research. 2019; 19(1):587. [DOI:10.1186/s12913-019-4432-3] [PMID] [PMCID]
  34. Mason D, Ingham B, Urbanowicz A, Michael C, Birtles H, Woodbury-Smith M, et al. A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders. 2019; 49(8):3387-400. [DOI:10.1007/s10803-019-04049-2] [PMID] [PMCID]
  35. Donabedian A. The seven pillars of quality. Archives of Pathology & Laboratory Medicine. 1990; 114(11):1115-8. https://europepmc.org/article/med/2241519
  36. Mosadeghrad AM, Pourreza A, Akbarpour N. [Economic burden of autism spectrum disorders in Tehran (Persian)]. Tehran University Medical Journal. 2019; 76(10):665-71. http://tumj.tums.ac.ir/article-1-9278-en.html
  37. Gholipour K. [Identifying the expectations and experiences of service providers and recipients in the field of services provision to children with autism spectrum disorder in Tabriz (Persian)]. [Research Project]. Tabriz: Tabriz University of Medical Science; 2015. https://pazhoohan.tbzmed.ac.ir/webdocument/load.action?webdocument_code=1000&masterCode=91059847
  38. Abdi K, Arab M, Khankeh HR, Kamali M, Rashidian A, Farahani FK, et al. Challenges in providing rehabilitation services for people with disabilities in Iran: A qualitative study. British Journal of Medicine and Medical Research. 2016; 13(4):1-11. [DOI:10.9734/BJMMR/2016/23337]
  39. Najafi Z, Abdi K, Khanjani MS, Dalvand H, Amiri M. Convention on the rights of persons with disabilities: Qualitative exploration of barriers to the implementation of articles 25 (health) and 26 (rehabilitation) in Iran. Medical Journal of the Islamic Republic of Iran. 2021; 35:10. [DOI:10.47176/mjiri.35.10] [PMID] [PMCID]
  40. Rabanifar N, Abdi K. Rehabilitation services: Why should we use tele-rehabilitation in Iran? Necessity and application. Iranian Rehabilitation Journal. 2019; 17(4):293-6. [DOI:10.32598/irj.17.4.293]
  41. Rabanifar N, Abdi K. Letter to Editor: Telerehabilitation: A Useful and appropriate approach for people with disability in Covid-19 pandemic. Medical Journal of The Islamic Republic of Iran. 2021; 35(1):125-6. [DOI:10.47176/mjiri.35.18] [PMID] [PMCID]
 
Type of Study: Review | Subject: Rehabilitation
Received: 21/02/2021 | Accepted: 5/05/2021 | Published: 1/10/2021

Add your comments about this article : Your username or Email:
CAPTCHA

Send email to the article author


Rights and permissions
Creative Commons License This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

© 2023 CC BY-NC 4.0 | Archives of Rehabilitation

Designed & Developed by : Yektaweb