Autism spectrum disorder (ASD) affects about 1.4% of the population in South Asia but very few have access to any form of health care service. The objective of this study was to explore the beliefs and practices related to the care of children with ASD to inform strategies for intervention. In Pakistan, primary data were collected through in-depth interviews of parents (N = 15), while in India a narrative review of existing studies was conducted. The results show that the burden of care is almost entirely on the mother, leading to high levels of stress. Poor awareness of the condition in both family members and front-line health-providers leads to delay in recognition and appropriate management. There is considerable stigma and discrimination affecting children with autism and their families. Specialist services are rare, concentrated in urban areas, and inaccessible to the majority. Strategies for intervention should include building community and family support networks to provide respite to the main carer. In the absence of specialists, community members such as community health workers, traditional practitioners and even motivated family members could be trained in recognizing and providing evidence-based interventions. Such task-shifting strategies should be accompanied by campaigns to raise awareness so greater inclusivity can be achieved.
BackgroundEvidence-based interventions for autism spectrum disorders evaluated in high-income countries typically require highly specialised manpower, which is a scarce resource in most low- and middle-income settings. This resource limitation results in most children not having access to evidence-based interventions.ObjectiveThis paper reports on the systematic adaptation of an evidence-based intervention, the Preschool Autism Communication Therapy (PACT) evaluated in a large trial in the United Kingdom for delivery in a low-resource setting through the process of task-shifting.DesignThe adaptation process used the Medical Research Council framework for the development and adaptation of complex interventions, focusing on qualitative methods and case series and was conducted simultaneously in India and Pakistan.ResultsThe original intervention delivered by speech and language therapists in a high-resource setting required adaptation in some aspects of its content and delivery to enhance contextual acceptability and to enable the intervention to be delivered by non-specialists.ConclusionsThe resulting intervention, the Parent-mediated intervention for Autism Spectrum Disorder in South Asia (PASS), shares the core theoretical foundations of the original PACT but is adapted in several respects to enhance its acceptability, feasibility, and scalability in low-resource settings.
Aims and MethodTo develop a child and adolescent mental health service in a low-income country. This was a collaborative effort involving governmental and non-governmental organisations in the UK and Pakistan, where a training clinic was established.ResultsWe assessed and treated 169 children and adolescents. A team of mental health professionals was trained, including one consultant psychiatrist; the consultant psychiatrist is now leading the clinic. Links were further developed with healthcare, social care and educational organisations, as well as efforts made to engage the public in relation to child and adolescent mental health.Clinical ImplicationsOur development highlights a model of research collaboration and service development which may be sustainable in low-income settings. Such initiatives need support from a variety of organisations. There is a need to consider whether there should be a formal funding mechanism to support the Royal College of Psychiatrists Senior Volunteer Programme.
Globally there is a substantial burden of mental health problems among children and adolescents. Task-shifting/task-sharing mental health services to non-specialists, e.g. teachers in school settings, provide a unique opportunity for the implementation of mental health interventions at scale in low- and middle-income countries (LMICs). There is scant information to guide the large-scale implementation of school-based mental health programme in LMICs. This article describes pathways for large-scale implementation of a School Mental Health Program (SMHP) in the Eastern Mediterranean Region (EMR). A collaborative learning group (CLG) comprising stakeholders involved in implementing the SMHP including policymakers, programme managers and researchers from EMR countries was established. Participants in the CLG applied the theory of change (ToC) methodology to identify sets of preconditions, assumptions and hypothesized pathways for improving the mental health outcomes of school-aged children in public schools through implementation of the SMHP. The proposed pathways were then validated through multiple regional and national ToC workshops held between January 2017 and September 2019, as the SMHP was being rolled out in three EMR countries: Egypt, Pakistan and Iran. Preconditions, strategies and programmatic/contextual adaptations that apply across these three countries were drawn from qualitative narrative summaries of programme implementation processes and facilitated discussions during biannual CLG meetings. The ToC for large-scale implementation of the SMHP in the EMR suggests that identifying national champions, formulating dedicated cross-sectoral (including the health and education sector) implementation teams, sustained policy advocacy and stakeholders engagement across multiple levels, and effective co-ordination among education and health systems especially at the local level are among the critical factors for large-scale programme implementation. The pathways described in this paper are useful for facilitating effective implementation of the SMHP at scale and provide a theory-based framework for evaluating the SMHP and similar programmes in the EMR and other LMICs.
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