Ethical Considerations in Conducting Research on Autism Spectrum Disorders in Low and Middle Income Countries

2013 ◽  
Vol 43 (9) ◽  
pp. 2002-2014 ◽  
Author(s):  
Tamara C. Daley ◽  
Nidhi Singhal ◽  
Vibha Krishnamurthy
Keyword(s):  
Autism Spectrum Disorders ◽  
Autism Spectrum ◽  
Ethical Considerations ◽  
Middle Income ◽  
Middle Income Countries ◽  
Spectrum Disorders ◽  
Conducting Research ◽  
Low And Middle Income

scholarly journals Early screening and diagnosis of autism spectrum disorders in Vietnam: A population-based cross-sectional survey

2021 ◽  
Author(s):  
Le Thi Vui ◽  
Duong Minh Duc ◽  
Nguyen Thuy Quynh ◽  
Nguyen Thi Huong Giang ◽  
Vu Thi Thanh Mai ◽  
...  
Keyword(s):  
Autism Spectrum Disorders ◽  
Early Detection ◽  
Public Health Problem ◽  
Population Based ◽  
Autism Spectrum ◽  
Urban Setting ◽  
Cross Sectional ◽  
Middle Income ◽  
Middle Income Countries ◽  
Spectrum Disorders

Background: Early detection of autism spectrum disorders (ASDs) is essential given the under-reported cases in low- and middle-income countries. This first national representative survey was conducted to explore the prevalence of ASDs amongst 18 and 30 months in seven provinces in Vietnam.Design and Method: During 2017- 2018, a national cross-sectional and population-based survey for autism spectrum disorder (ASD) amongst 40,243 children aged 18 to 30 months was conducted in 7 provinces representing the socio-economic regions of Vietnam. M-CHAT was used to screen children and then confirmed by diagnostic assessment using DSM-IV criteria.Results: The prevalence of ASDs amongst children aged 18 and 30 months in Vietnam was high (0.758% or 1 in 132 children). Urban setting, male gender, and hereditable genes were associated with ASD prevalence.Conclusion: ASDs amongst children aged 18 and 30 months in Vietnam tend to be increasing and are similar to this rate in other middle-income countries but lower than that in Western countries. This under-recognized public health problem amongst children should be addressed by early detection and intervention for families with affected children.

Scoping Review of Interventions for Individuals with Autism Spectrum Disorders in Low-and-Middle-Income Countries

2021 ◽  
Author(s):  
Lin Sun
Keyword(s):  
Scoping Review ◽  
Behavioral Interventions ◽  
Autism Spectrum ◽  
Middle Income ◽  
Standardized Measures ◽  
Middle Income Countries ◽  
Intervention Content ◽  
Spectrum Disorders ◽  
Autism Interventions ◽  
Low And Middle Income

Although an increased number of autism interventions have been introduced from high-income countries (HICs) to low-and-middle-income countries (LMICs), research exists to show that interventions validated as effective in HICs are not equally effective in LMICs. The lack of an overview of autism interventions from LMICs presents a knowledge barrier to well-informed implementation of autism interventions in LMICs’ contexts. This scoping review sought to answer: (a) what autism interventions have been reported in LMICs? and (b) how those interventions were adopted to tailor LMICs’ contexts? Twenty intervention studies were included for review. Results revealed that 12 of 20 interventions were originally developed in HICs. The interventions reported across LMICs presented a recognizable profile similar to those in HICs concerning (a) the dominance of mothers’ involvement in parent-implemented interventions, (b) a preponderance of social communication and behavioral interventions, and (c) the use of prevalent standardized measures developed in the HICs. The included interventions were delivered across Africa, Asia, and Eastern Europe with various degrees of adaptions made in (a) intervention content and context, (b) assessment of participant eligibility, and (c) outcome measures. Implications for capacity building in autism interventions across LMICs, were discussed thereafter.

scholarly journals The importance of context in early autism intervention: A qualitative South African study

Autism ◽  
2017 ◽  
Vol 22 (8) ◽  
pp. 1005-1017 ◽  
Author(s):  
Jessy Guler ◽  
Petrus J de Vries ◽  
Noleen Seris ◽  
Nokuthula Shabalala ◽  
Lauren Franz
Keyword(s):  
Autism Spectrum Disorder ◽  
South African ◽  
Health Workers ◽  
Contextual Factors ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Middle Income ◽  
Middle Income Countries ◽  
Treatment Type ◽  
Low And Middle Income

The majority of individuals with autism spectrum disorder live in low- and middle-income countries and receive little or no services from health or social care systems. The development and validation of autism spectrum disorder interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in low- and middle-income countries. This study qualitatively explored contextual factors relevant to the adaptation of a caregiver-mediated early autism spectrum disorder intervention in a low-resource South African setting. We conducted four focus groups and four in-depth interviews with 28 caregivers of young children with autism spectrum disorder and used thematic analysis to identify key themes. Eight contextual factors including culture, language, location of treatment, cost of treatment, type of service provider, support, parenting practices, and stigma emerged as important. Caregivers reported a preference for an affordable, in-home, individualized early autism spectrum disorder intervention, where they have an active voice in shaping treatment goals. Distrust of community-based health workers and challenges associated with autism spectrum disorder-related stigma were identified. Recommendations that integrate caregiver preferences with the development of a low-cost and scalable caregiver-mediated early autism spectrum disorder intervention are included.

Screening for autism spectrum disorder in low- and middle-income countries: A systematic review

Autism ◽  
2017 ◽  
Vol 21 (5) ◽  
pp. 527-539 ◽  
Author(s):  
Lydia A Stewart ◽  
Li-Ching Lee
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Study Design ◽  
Cultural Adaptation ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Screening Instruments ◽  
Middle Income ◽  
Middle Income Countries ◽  
Low And Middle Income

This review contributes to the growing body of global autism spectrum disorder literature by examining the use of screening instruments in low- and middle-income countries with respect to study design and methodology, instrument adaptation and performance, and collaboration with community stakeholders in research. A systematic review was conducted to understand the use of autism spectrum disorder screening instruments in low- and middle-income countries from studies published between 1992 and 2015. This review found that 18 different autism spectrum disorder screeners have been used in low- and middle-income settings with wide ranges of sensitivities and specificities. The significant variation in study design, screening methodology, and population characteristics limits the ability of this review to make robust recommendations about optimal screening tool selection. Clinical-based screening for autism spectrum disorder was the most widely reported method. However, community-based screening was shown to be an effective method for identifying autism spectrum disorder in communities with limited clinical resources. Only a few studies included in this review reported cultural adaptation of screening tools and collaboration with local stakeholders. Establishing guidelines for the reporting of cultural adaptation and community collaboration procedures as well as screening instrument psychometrics and screening methodology will enable the field to develop best practices for autism spectrum disorder screening in low-resource settings.

scholarly journals PREVALENCE AND COMORBIDITIES OF AUTISM SPECTRUM DISORDERS IN REPUBLIC OF GEORGIA

2021 ◽  
Author(s):  
Medea Zirakashvili ◽  
Tamar Mikiashvili ◽  
Nana Mebonia ◽  
Maia Gabunia
Keyword(s):  
Neurodevelopmental Disorder ◽  
Diagnostic Procedures ◽  
Target Population ◽  
Autism Spectrum ◽  
Diagnostic Assessment ◽  
Control Group ◽  
Republic Of Georgia ◽  
Middle Income ◽  
Middle Income Countries ◽  
Spectrum Disorders

Introduction Autism spectrum disorder (ASD), complex neurodevelopmental condition with lifelong impacts, typically identified in early childhood. Despite the fact that 95% of all <5 years of age with developmental disabilities including ASD live in low- and middle-income countries, the prevalence of ASD in many these countries is unknown. Objectives and goals The study aimed to identify the prevalence and clinical characteristics of ASD and its comorbidities among 8-10 y old schoolchildren in Republic of Georgia. Material and Methods The study conducted in four steps: screening, sampling, diagnostic assessment, and quality control of best-estimate diagnosis with target population of 3rd grade students of five main cities (Tbilisi, Kutaisi, Batumi, Zugdidi, Telavi) of Georgia (N=22,553). To determine children at risk for ASD the Autism Spectrum Screening Questionnaire (ASSQ) was used completed by parents and teachers. Parents of children who screened positive were offered comprehensive assessment using standardized diagnostic procedures. Results and Conclusions 16654 (response rate 74%) parents were agreed to participate in the screening stage. Cut-off scores for 99-95 percentiles (top 1-5%) was defined. For the 1168 sampled screen-positive students 704 (60.3%) consented to participate in the diagnostic assessment, and 215 among them (30.5%) completed full assessment. The control group of 23 children (from non in top 10%) were fully assessed for ASD. The prevalence of ASD was estimated to be 1.34% (95%CI=2.15-4.41). From ASD group 77.5% of cases were undiagnosed to have any neurodevelopmental disorder. Comorbidity of Intellectual disability was in 22.5% of children with ASD (IQ<70), and 31% have IQ>111. The study defined need for the use of broader screening in primary healthcare and school settings to identify children with special needs and ensure their adequate services.

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