Locked down-locked in: experiences of families of young children with autism spectrum disorders in Delhi, India.

Introduction: The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities. Methods: This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India. Results: Our findings identified pandemic and lockdown's universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic's impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown's novelty also affected children's behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family's safety and well-being during the difficult time. Discussions: These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.

Early Autism Intervention Components Deliverable by Non-specialists in Low- and Middle-Income Countries: A Scoping Review.

Introduction: The past decade has seen key advances in early intervention for autistic children in high-income countries, with most evidence based on specialist delivery of interventions. The care gap seen in low- and middle-income countries (LMIC) remains close to 100%. A key challenge in addressing this care gap concerns the paucity of specialists available to deliver services. Task-sharing provides an important potential solution; there is a need to identify interventions that are suitable for scaled-up delivery through task-sharing in low-resourced settings. We aimed to conduct a scoping review to identify studies which reported autism intervention delivered by non-specialists within LMIC and, using established frameworks, specify intervention components with evidence of successful non-specialist delivery. Methods: A scoping literature search, conducted within four databases, generated 2,535 articles. Duplicates were removed, followed by screening of titles and abstracts, with 10% double-rated for reliability. 50 full text articles were then screened independently by two raters. Articles were included if studies: (a) were conducted in LMIC; (b) included samples of autistic children (age < 10); (c) evaluated psycho-social interventions delivered by non-specialists; (d) reported child outcomes; and (e) were peer-reviewed full-texts in English. Two established frameworks - @Practicewise and NDBI-Fi framework - were then used to ascertain the commonly delivered components of these interventions. Results: Two studies met the inclusion criteria. Both studies evaluated parent-mediated interventions delivered by non-specialists in South Asia. Through the two frameworks, we identified elements and techniques that had been delivered successfully by non-specialists. Conclusion: There is evidence from two acceptability and feasibility trials that non-specialists can be trained to deliver some intervention elements and techniques within parent-mediated interventions, with good fidelity and acceptability and evidence of effectiveness. The review points up the lack of a widespread evidence base in this area and need for further research in low resourced settings, including well-powered trials and mechanistic analyses to identify active ingredients. A focus on the pre-requisites for non-specialist delivery is critical to reduce inequity and provide universal health coverage within resource-constrained health systems.

From engagement to competency: The pathway to making disability naïve frontline workers competent in the delivery of an evidence-based autism intervention in New Delhi, India.

Background: As countries like India improve access to maternal and infant care, the health systems need to develop services that enable all children to thrive. A key demographic which needs to be supported are children with disabilities, such as autism. With an estimated prevalence of one percent, there are over five million young children who need services to support their needs. However, the paucity of specialist care makes access to interventions difficult. In this context a public health research not-for-profit is evaluating the effectiveness of the task-sharing approach to support the delivery of an evidenced social communication intervention for young children with autism. This paper describes the process of engaging and training the non-specialist frontline Accredited Social Health Activists (ASHAs), who are embedded within the Ministry of Health and Family Welfare under the Delhi State Health Mission, to deliver a complex intervention for autism to inform the future scalability of services for neurodevelopmental disorders. Methods: The present study describes the process which included (i) engagement meetings, (ii) recruitment, (iii) training, (iv) internship, and (v) competency evaluation. The shortlisted ASHAs received a 7-day classroom training followed by an internship period with practice cases. Finally, competency assessments, comprising of a test of knowledge and skills through role-plays, was administered. Results: Twenty three Primary Urban Health Centers across seven districts of Delhi were approached and 408 ASHAs were engaged in initial meetings. Telephonic screening with 127 ASHAs resulted in 72 ASHAs being selected for in-person interviews. Of the 45 ASHAs who attended, 33 were shortlisted for training and 18 completed it. Fifteen ASHAs entered the internship of which 7 ASHAs achieved competency. Discussion and conclusion: There was significant attrition along the pathway to having a competent non-specialist worker deliver a complex autism intervention. The lessons learnt from this process can inform the possibility of developing a cadre of disability specific frontline health workers who can deliver evidence-based interventions for neurodevelopmental disorders under supervision.