Exploring rehabilitation providers' perspectives of assistive technology access after the implementation of a paediatric AT provision program in rural South India.

A paediatric Assistive Technology (AT) Provision Program was implemented by a non-governmental rehabilitation facility in rural South India to support rehabilitation providers in providing needed AT access for children with disabilities. Capacity-building measures for providers and other supports based on the AT needs, barriers, and facilitators to AT access were implemented that aligned with the AT global report for low-middle income countries (LMIC). This study explores how the initiatives from the AT Provision Program have influenced the perspectives of rehabilitation providers on AT access.Using a qualitative design eight paediatric rehabilitation providers were purposively sampled for virtual semi-structured interviews. Findings were analysed using thematic analysis.Six overarching themes were identified: (1) Stigma associated with AT use, (2) Organisational response to changing needs, (3) Financial factors related to family socioeconomic status and the organisation providing AT services, (4) Inequity of AT service access in rural areas, (5) Provider AT awareness and confidence and, (6) Quality assurance. Rehabilitation providers' experiences informed future AT capacity-building strategies within a low-resource context. Our findings provide valuable insights for the development of comprehensive AT Provision Program initiatives to provide AT access for children with disabilities in LMIC settings.

The perspectives of rehabilitation providers in low- and middle-income countries are important to expand the limited research in understanding Assistive Technology (AT) provision in these countries to advance program development and planning.Organized access to AT in rural communities, particularly in developing countries such as India, enables children with disabilities to improve their participation in social, recreational, and educational opportunities.Exploring rehabilitation providers' perspectives gives insight into barriers and opportunities surrounding AT access within their cultural context, and how it influences their clinical practice.Integrating the AT Access Principle framework from the 2022 WHO-UNICEF Global Report on AT, this study evaluates the current AT systems in rural south India and can further inform strategic planning in low-middle income countries to mitigate access barriers encountered along the AT access pathway.

Social capital of families of children with neurodevelopmental disabilities in South India.

AIM: To investigate the social capital of families with children with neurodevelopmental disabilities in South India receiving a community-based early intervention (Enabling Inclusion®) program and to explore determinants and associations between social capital and program duration, socio-demographic factors, family empowerment, and caregiver burden. METHOD: Using purposive sampling in a cross-sectional study design, 217 families (n = 71 received short Enabling Inclusion [<5 months]; n = 146 received long Enabling Inclusion [>9 months]) were recruited and completed the Short Adapted Social Capital Tool (SASCAT: cognitive, structural), measures of family empowerment, and caregiver strain. Descriptive statistics, regression, and correlations were used for analyses. RESULTS: In 52.1% of participants, low cognitive and structural social capital was observed. Higher odds of low structural social capital were observed for mothers with primary versus secondary education (adjusted odds ratio [OR] = 0.35; 95% confidence interval [CI] 0.13-0.90; p = 0.029); and caregivers of children with cerebral palsy versus autism (OR = 4.66; 95% CI 1.02-21.21; p = 0.046). Significant associations were found between structural social capital, the child's age, and support group membership (χ2 = 6.29; 4.70; degrees of freedom [df] = 2; 1; p = 0.04; p = 0.02 respectively), as well as between cognitive social capital and other disability in the family (χ2 = 4.62, df = 1, p = 0.03). INTERPRETATION: While program duration was not found to mediate social capital, mother's education and child's diagnosis emerged as key influential factors, warranting their consideration in interventions supporting families of children with neurodevelopmental disabilities in low- and-middle-income countries and elsewhere.

A capacity-building intervention for parents of children with disabilities in rural South India.

BACKGROUND: A disability service organization piloted a parent capacity-building intervention for parents of children with developmental disabilities in rural South India. AIMS: To examine the impact of this parent capacity-building group intervention on parent empowerment, peer support, social inclusion, advocacy skills, and the factors influencing these outcomes. METHODS AND PROCEDURES: A qualitative study recruited 37 participants from 17 parent groups through convenience sampling. Six focus groups occurred six months post the start of this intervention and explored these parents' experiences with the groups and their perceived impacts. OUTCOMES AND RESULTS: Qualitative analysis yielded four main themes and corresponding sub-themes: peer support (feeling peaceful and supported, building self-efficacy), social inclusion (space to share, acceptance and identity), knowledge sharing (increasing awareness, accepting advice), and advocacy (building confidence, making requests). Participation in parent groups provided participants with opportunities to find peer support, utilize knowledge sharing, feel socially included, and build advocacy skills. CONCLUSIONS AND IMPLICATIONS: This study provides a greater understanding of the impact and benefits of parent capacity-building interventions in low-resource settings. Results will improve this intervention and guide other organizations in creating similar programs. WHAT THIS PAPER ADDS: This paper adds perspectives of parents who are caregivers of children with developmental disabilities in rural South India. More specifically, this paper highlights the impact of a parent-focused intervention in group settings in both rural and urban areas. Parent support group interventions are not common in India and low- and middle-income countries and there is a paucity of literature describing these interventions and their impact. In this study, parents described a need for multifaceted interventions to support their child in the community. These parent groups provided space for caregivers of children with developmental disabilities to make connections, feel validated, and grow confidence to utilize new knowledge or advice shared by other parents to further enhance their lives. Further, parent-group settings provide opportunities to build advocacy skills through timely discussions. Parents reported an increase in feelings of acceptance within the group itself but not within the wider community. This highlights the need for involving the wider community in interventions to promote integration for families with children with disabilities.

Enabling local provision of assistive products in rural South India: an organisational survey of needs, barriers, and facilitators.

Objective: Access to assistive products (APs) is essential to maximising function, participation, and inclusion of persons with disabilities. Challenges to AP access in low- and middle-income countries include stigma, costs, supply, and rehabilitation capacity gaps. This study aimed to examine AT access in the context of a low-resource setting in rural South India. Objectives were to examine rehabilitation professionals' perceptions of AP needs, barriers and facilitators of AP provision, and AT knowledge.Methods: A descriptive study design with a 2-part online survey methodology was utilized. This study was conducted in April-September 2020 at a non-governmental organization (NGO) serving children and adults with disabilities in 3 districts of rural South India. Purposive sampling of NGO's multidisciplinary rehabilitation professionals (N=62) was used. The survey was developed based on WHO's Assistive Products List (APL). Barriers and facilitators were classified according to the principles of AT access. Analyses revealed acceptability, affordability, and availability as the top three barrier themes across disciplines, including poor acceptance by clients/families due to stigma, high AP costs, and a long waitlist for government-provided devices. Acceptability, affordability, and accessibility were the top three facilitator themes, including community awareness, availability of AP funding, client/family education, and AT service provision training.Impact: Our study identified key enabling strategies for AT access, aimed at reducing reported barriers. Enabling AP provision was determined to be multi-factorial, aimed at users/ families, service providers, organizations, communities, and policymakers. Local stakeholder groups are crucial to understanding challenges and opportunities to AP provision within a low-resource context.

Identified barriers to assistive product (AP) provision in rural South India include poor acceptance by clients/families due to stigma, high AP costs, limited AP availability, and rehabilitation capacity gaps.Suggested facilitators to AP provision in rural South India include improving AP acceptability, affordability, and accessibility through community awareness, client/family education, AP funding and supply, and assistive technology (AT) service provision capacity building.An organisational-level survey based on the WHO's Priority Assistive Products List and the Principles of AT Access can identify local needs, barriers and facilitators.An AT access strategies in resource-limited areas may be developed based on barriers and facilitators identified by local/regional rehabilitation professionals.

Leveraging monitoring, evaluation, and learning to scale the Enabling Inclusion® program for children with disabilities in India and globally.

Introduction: Children with disabilities in low- and middle-income countries face many challenges and lack adequate services, including access to rehabilitation professionals. To address this lack of access, Amar Seva Sangam Ayikudy (ASSA), a non-governmental organization (NGO) in India, designed a technology-leveraged rehabilitation program called Enabling Inclusion® (EI®), and implemented it in one state (Tamil Nadu, India) before scaling it. The model is supported by the EI® app, which enables organizations to screen, assess and monitor progress of children with disabilities via rehabilitation specialists and community rehabilitation workers, and to provide family-centered, goal-based interventions. An extensive monitoring, evaluation, and learning (MEL) framework is embedded into the program. This paper explores how this MEL system supported the scaling of the EI® model, reaching additional beneficiaries nationally and globally. Methods: This paper describes ASSA's MEL framework and demonstrates its use for decision-making in the process of scaling. It also explores how collaborations with various government departments, NGOs, and private partners contributed to the scaling of the EI® model and technology. Results: Scaling of the EI® program was achieved by (1) expansion of the program in rural Tamil Nadu (vertical scale-up) in partnership with the Tamil Nadu government and private partners, and (2) by licensing the EI® app and model to other NGOs in various states in India and globally (horizontal scale-up). Systematic examination of key program and performance indicators, as well as stakeholder feedback, informed decisions to modify the EI® app over time. This included further customizing to the needs of children and service providers, covering a greater range of age groups and contexts, and modifying service delivery models. Child functional independence, participation, and inclusion was further strengthened by mobilizing parent empowerment groups, community awareness programs, school advocacy, and entitlements from the government. Flexibility in the implementation model of the EI® app allowed for adaptation to local contexts and organizations, and facilitated its scale-up. Conclusion: A dynamic, inclusive, and locally grounded MEL system, a flexible and collaborative approach, and an adaptive implementation model increased the accessibility of an early intervention and childhood rehabilitation program for children with disabilities and their families throughout the state of Tamil Nadu, across India, and internationally.

Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays.

BACKGROUND: This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-based early intervention programme in South India. METHODS: This prospective open cohort longitudinal study compared change from baseline to two years post-intervention among caregivers of the first cohort of children who were enrolled in the programme. Paired t-tests determined effect on the Modified Caregiver Strain Index (MCSI) and Family Empowerment Scale (FES), and p-values were adjusted for multiple comparisons using the False Discovery Rate approach. RESULTS: Of the 308 caregivers (91% women), 44% provided care to children with cerebral palsy and 56% to children with other developmental delays. The mean age of the children at baseline was 3.3 (±1.5 years). The overall mean change from baseline in the FES was 4.1 (95% CI: 3.3, 4.9; p < 0.001) representing improved empowerment. The mean change for the MCSI score was -3.7 (95% CI: -4.5, -2.9; p < 0.001) representing reduced caregiver strain. CONCLUSIONS: A family-centred early intervention programme that provides training and education to caregivers of children with developmental delays demonstrated positive change in caregiver strain and family empowerment.Implications for RehabilitationThe well-being of a child is influenced by the well-being of their caregiver.Improving caregiver well-being can help improve care and support for children with developmental delays.A family-centred early intervention therapy programme that includes training and education to caregivers can reduce strain and improve family empowerment.

An integrated knowledge translation project to develop, implement, and evaluate a train-the-trainer program at a community rehabilitation program in Tamil Nadu, India.

PURPOSE: This project aimed to develop, implement and evaluate a train-the-trainer initiative for community rehabilitation workers (CRWs) and rehabilitation specialists within a community rehabilitation program for children with delayed development in Tamil Nadu, India. METHODS: Guided by the Knowledge to Action framework, non-governmental and academic partners collaboratively developed two 2-day workshops for (1) rehabilitation specialists and (2) CRWs. Outcomes were evaluated using mixed methods, with pre and 2.5-months post surveys (59 participants) and three focus groups (17 participants) involving trainers and trainees (including rehabilitation specialists and CRWs). RESULTS: There were significant increases in the CRWs' self-perception of their capacity to assess comprehension, provide explanations, respond to questions, adjust teaching, motivate learners, communicate effectively, and provide feedback. Significant changes were noted for rehabilitation specialists in five of seven domains, and for rehabilitation specialist leads in six of seven domains. Participants appreciated the interactive training style, and the use of immersive methods such as role play, though noted challenges when instructions were unclear or when they felt that material was more theoretical. CONCLUSIONS: This collaboratively developed train-the-trainer project demonstrates the value of such an intervention, provides an example of how a tailored program can be developed, and suggests the importance of stakeholder-driven design processes.Implications for RehabilitationThe ability to provide effective training is a core skill set for people engaged in community-based rehabilitation (CBR) programs, yet examples of initiatives to train trainers are lacking, as is their evaluation.This project demonstrates the value of a collaborative and tailored train-the-trainer program to support community rehabilitation workers and rehabilitation specialists in their training roles within a CBR program in India.A stakeholder-driven design process supported by a collaboration between non-governmental organization and academic partners enhanced the capacity to develop, implement and evaluate the train-the-trainer program.

Rapid-Cycle Evaluation in an Early Intervention Program for Children With Developmental Disabilities in South India: Optimizing Service Providers' Quality of Work-Life, Family Program Engagement, and School Enrollment.

Background: This paper explores how implementation and refinement of an early intervention (EI) program for children with delayed development was informed by an iterative, intentional and structured process of measurement. Providing access to early intervention therapy for children in rural areas of India is challenging due to a lack of rehabilitation therapists and programs. Following a biopsychosocial framework and principles of community-based rehabilitation, a non-governmental organization, Amar Seva Sangam (ASSA), overcame those barriers by designing a digital technology supported EI program in rural Tamil Nadu, India. Program objectives included providing service access; supporting program engagement, child development and school enrollment; and positioning the intervention for scale-up. This paper contributes to a growing body of literature on how program design and implementation can be informed through a cyclical process of data collection, analysis, reflection, and adaptation. Methods: Through several strands of data collection, the design and implementation of the EI program was adapted and improved. This included qualitative data from focus groups and interviews with caregivers and service providers, and a mobile application that collected and monitored longitudinal quantitative data, including program engagement rates, developmental progression, caregiver outcomes, and school enrollment status. Results: Measurements throughout the program informed decision-making by identifying facilitators and barriers to service providers' quality of work-life, family program engagement, and school enrollment. Consultation with key stakeholders, including caregivers and service providers, and data driven decision making led to continual program changes that improved service provider quality of work-life, program engagement and school enrollment. These changes included addressing gender-related work challenges for service providers; forming caregiver support networks; introducing psychological counseling for caregivers; providing medical consultations and assistive devices; creating community awareness programs; improving access to therapy services; focusing on caregiver education, motivation and support; and advocacy for accessibility in schools. Conclusion: The process of using evidence-informed and stakeholder driven adaptations to the early intervention program, led to improved service provider quality of work-life, greater program engagement, improved school enrollment and positioned the intervention for scale-up, providing lessons that may be beneficial in other contexts.