Adapting an Autism Screening Tool for Use at the DeKalb County Refugee Pediatric Clinic Open Access
Calhoun, Catherine Clay (2015)
Abstract
The Centers for Disease Control and Prevention reports that Autism Spectrum Disorder (ASD) affects 1 in every 68 children.[1] Although awareness, screening and research of ASD continue to improve within the US pediatric population, there remains little knowledge regarding prevalence of ASD within US immigrant and refugee populations. Early detection of ASD, when followed by a combination of mental health, behavioral and educational therapies, provides children and caregivers with the best skills to manage ASD. [2] Thus, a diagnosis of ASD is a crucial step which allows families and children to access the medical, psychiatric, behavioral, and social services that would be unavailable to them otherwise. [3] The M-CHAT-R/F (Modified Checklist for Autism in Toddlers, Revised with Follow-Up) is a widely-used screening tool, used both internationally and within the United States to assess a child's risk of ASD. The M-CHAT-R/F questionnaire has been translated into several languages; however, there is currently no ASD screening tool that has been translated into Nepali. Additionally, little is known about the prevalence of ASD among refugee children, such as the Nepali pediatric patients of the DeKalb County Refugee Pediatric Clinic. The goals of this project were three-fold: 1) adapt the M-CHAT-R/F so that it is a culturally appropriate screening tool, 2) conduct qualitative interviews with Nepali caregivers regarding their understanding of child-development and ASD and 3) disseminate the adapted M-CHAT-R/F to other pediatric clinics serving similar populations. We successfully adapted the M-CHAT-R/F into Nepali for use in the DeKalb County Refugee Pediatric Clinic and similar clinics. Additionally, we found that little knowledge exists among Nepali caregivers regarding ASD and developmental delay. Future validation studies of the Nepali M-CHAT-R/F will aid in epidemiologic research of ASD in refugee populations.
Table of Contents
Chapter 1: Introduction Page 1
Chapter 2: Comprehensive Review of the Literature Page 6
Figure 1: Referral for Clinical Genetic Assessment of an Individual with ASD
Table 1. Timeline for Developmental and ASD Surveillance and/or Screening
Chapter 3: Project Content (Methods & Results) Page 18
Figure 2. Nepali caregiver and patient recruitment process for M-CHAT-R/F screening and adapation
Table 2: Each patient's M-CHAT-R/F screening process, by location, version and administrator
Table 3. Sociodemographic characteristics of participants
Table 4. M-CHAT-R/F items with concerning response(s) for ASD
Table 5. M-CHAT-R/F items in which caregivers had poor understanding of question's intent
Table 6. M-CHAT-R/F questions with both concerning responses and lack of caregiver understanding
Table 7: Final Revisions to Nepali M-CHAT-R/F
Table 8: Caregiver responses to M-CHAT-R/F items (concerning for ASD, unconcerning for ASD) and Caregiver understanding of M-CHAT-R/F item
Table 9. Caregiver responses to qualitative questions regarding child development and autism
Chapter 4: Chapter 4: Discussion, Conclusion and Recommendations Page 30
Appendices Page 36
References Page 38
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