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      Challenges and opportunities to improve autism services in low-income countries: lessons from a situational analysis in Ethiopia

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          Abstract

          Background.

          Little has been reported about service provision for children with autism in low-income countries. This study explored the current service provision for children with autism and their families in Ethiopia, the existing challenges and urgent needs, and stakeholders’ views on the best approaches to further develop services.

          Methods.

          A situational analysis was conducted based on (i) qualitative interviews with existing service providers; (ii) consultation with a wider group of stakeholders through two stakeholder workshops; and (iii) information available in the public domain. Findings were triangulated where possible.

          Results.

          Existing diagnostic and educational services for children with autism are scarce and largely confined to Ethiopia's capital city, with little provision in rural areas. Families of children with autism experience practical and psychosocial challenges, including severe stigma. Informants further raised the lack of culturally and contextually appropriate autism instruments as an important problem to be addressed. The study informants and local stakeholders provided several approaches for future service provision expansion, including service decentralisation, mental health training and awareness raising initiatives.

          Conclusions.

          Services for children with autism in Ethiopia are extremely limited; appropriate care for these children is further impeded by stigma and lack of awareness. Ethiopia's plans to scale up mental healthcare integrated into primary care provide an opportunity to expand services for children with autism and other developmental disorders. These plans, together with the additional strategies outlined in this paper can help to address the current service provision gaps and may also inform service enhancement approaches in other low-income countries.

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          Most cited references18

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          Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey

          Background Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia. Methods Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7 %; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3 %) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family’s unmet needs. Results Most caregivers reported experience of stigma: 43.1 % worried about being treated differently, 45.1 % felt ashamed about their child’s condition and 26.7 % made an effort to keep their child’s condition secret. Stigma did not depend on the type of developmental disorder, the child’s age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child’s condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4 %) or birth complications (25.5 %)) and supernatural explanations (e.g. spirit possession (40.2 %) or sinful act (27.5 %)) for their child’s condition. The biggest reported unmet need was educational provision for their child (74.5 %), followed by treatment by a health professional (47.1 %), financial support (30.4 %) and expert help to support their child’s development (27.5 %). Most caregivers reported that talking to health professionals (86.3 %) and family (85.3 %) helped them to cope. Many caregivers also used support from friends (76.5 %) and prayer (57.8 %) as coping mechanisms. Conclusions This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers’ support are needed. Electronic supplementary material The online version of this article (doi:10.1186/s12913-016-1383-9) contains supplementary material, which is available to authorized users.
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            Thinking globally to meet local needs: autism spectrum disorders in Africa and other low-resource environments.

            Most people with autism spectrum disorders (ASDs) live in low and middle-income countries, yet almost everything we know about ASD comes from high-income countries. Here we review recent research from Africa, with some references to research in other low-resource environments. We examine publications on screening and diagnosis, intervention, clinical presentation of ASD, cultural perspectives, and neuroscience and technology.
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              The point of triangulation.

              A Thurmond (2000)
              To explore various types of triangulation strategies and to indicate when different types of triangulation should be used in research. Reviews included literature on triangulation and multimethod strategies published since 1960 and research books specifically focusing on triangulation. Triangulation is the combination of at least two or more theoretical perspectives, methodological approaches, data sources, investigators, or data analysis methods. The intent of using triangulation is to decrease, negate, or counterbalance the deficiency of a single strategy, thereby increasing the ability to interpret the findings. The use of triangulation strategies does not strengthen a flawed study. Researchers should use triangulation if it can contribute to understanding the phenomenon; however, they must be able to articulate why the strategy is being used and how it might enhance the study.
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                Author and article information

                Journal
                Glob Ment Health (Camb)
                Glob Ment Health (Camb)
                GMH
                Global Mental Health
                Cambridge University Press (Cambridge, UK )
                2054-4251
                2016
                1 July 2016
                : 3
                : e21
                Affiliations
                [1 ]Department of Life, Health and Chemical Sciences, The Open University , UK
                [2 ]Department of Psychiatry, School of Medicine, College of Health Sciences, Addis Ababa University , Ethiopia
                [3 ]Centre for Global Mental Health, Institute of Psychiatry , Psychology & Neuroscience (IoPPN), King's College London, UK
                [4 ]Department of Psychology, IoPPN, King's College London , UK
                Author notes
                [* ]Address for correspondence: Dr R. A. Hoekstra, Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience (IoPPN), Second Floor Addison House , room AH2.14, Guy's Campus, King's College London, London, SE1 1UL, UK. (Email: Rosa.Hoekstra@ 123456kcl.ac.uk )
                Author information
                http://orcid.org/0000-0002-1333-9762
                Article
                S2054425116000170 00017
                10.1017/gmh.2016.17
                5454792
                28596889
                2c1b5382-8d0a-4191-b410-99ec138e87e6
                © The Author(s) 2016

                This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 December 2015
                : 25 April 2016
                : 05 June 2016
                Page count
                Figures: 1, Tables: 2, References: 30, Pages: 11
                Categories
                Policy and Systems
                Review

                africa,autism,child,mental health services,stigma
                africa, autism, child, mental health services, stigma

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