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.

Development of a Digital Program for Training Community Health Workers in the Detection and Referral of Schizophrenia in Rural India.

This study aimed to develop and assess the acceptability of a digital program for training community health workers (CHWs) in the detection and referral of patients with schizophrenia in community settings in rural India. An iterative design process was employed. First, evidence-based content from existing community programs for schizophrenia care was incorporated into the curriculum, and reviewed by experts to ensure clinical utility and fidelity of the adapted content. Second, CHWs provided feedback on the appropriateness of language, content, and an initial prototype of the digital training program to ensure relevance for the local context. Focus group discussions were then used to understand the acceptability of the digital training prototype and to inform modifications to the design and layout. Qualitative data was analysed using a rapid thematic analysis approach based on predetermined topics pertaining to acceptability of the training content and digital platform. Development of the initial prototype involved content review by 13 subject matter experts with clinical expertise or experience accessing and receiving mental health services, and engagement of 23 CHWs, of which 11 provided feedback for contextualization of the training content and 12 participated in focus group discussions on the acceptability of the prototype. Additionally, 2 service-users with lived experience of schizophrenia contributed to initial testing of the digital training prototype and offered feedback in a focus group discussion. During contextualization of the training content, key feedback pertained to simplifying the language and presentation of the content by removing technical terms and including interactive content and images to enhance interest and engagement with the digital training. During prototype testing, CHWs shared their familiarity with similar symptoms but were unaware of schizophrenia as a treatable illness. They shared that training can help them identify symptoms of schizophrenia and connect patients with specialized care. They were also able to understand misconceptions and discrimination towards people with schizophrenia, and how to address these challenges by supporting others and spreading awareness in their communities. Participants also appreciated the digital training, as it could save them time and could be incorporated within their routine work. This study shows the acceptability of leveraging digital technology for building capacity of CHWs to support early detection and referral of schizophrenia in community settings in rural India. These findings can inform the subsequent evaluation of this digital training program to determine its impact on enhancing the knowledge and skills of CHWs.

Schizophrenia Assessment, Referral and Awareness Training for Health Auxiliaries (SARATHA): Protocol for a Mixed-Methods Pilot Study in Rural India.

BACKGROUND: Workforce shortages pose major obstacles to the timely detection and treatment of schizophrenia, particularly in low-income and middle-income countries. The SARATHA (Schizophrenia Assessment, Referral, and Awareness Training for Health Auxiliaries) project involves the systematic development, iterative refinement, and pilot testing of a digital program for training community health workers in the early detection and referral of schizophrenia in primary care settings in rural India. METHODS: SARATHA is a three-phase study. Phase 1 involves consulting with experts and clinicians, and drawing from existing evidence to inform the development of a curriculum for training community health workers. Phase 2 consists of designing and digitizing the training content for delivery on a smartphone app. Design workshops and focus group discussions will be conducted to seek input from community health workers and service users living with schizophrenia to guide revisions and refinements to the program content. Lastly, Phase 3 entails piloting the training program with a target sample of 20 community health workers to assess feasibility and acceptability. Preliminary effectiveness will be explored, as measured by community health workers' changes in knowledge about schizophrenia and the program content after completing the training. DISCUSSION: If successful, this digital training program will offer a potentially scalable approach for building capacity of frontline community health workers towards reducing delays in early detection of schizophrenia in primary care settings in rural India. This study can inform efforts to improve treatment outcomes for persons living with schizophrenia in low-resource settings.

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.