CARER program for autism spectrum disorder: a formative qualitative study on developing an early play-based, parent-mediated intervention in the Indian context

TL;DR

This study developed CARER, a play-based, parent-led intervention for autism in India, aiming to support families in low-resource settings through structured outpatient sessions.

Contribution

The CARER program introduces a novel, culturally adapted, parent-mediated intervention tailored for low-resource outpatient settings in India.

Findings

Stakeholders identified psychoeducation, caregiver training, child education, and parental stress as key domains for intervention.

CARER integrates play-based strategies and parent coaching into 12 outpatient sessions, focusing on communication, social skills, and caregiver empowerment.

The program emphasizes home generalization and addresses barriers in low-resource settings through feasible, structured sessions.

Abstract

Families of children with Autism Spectrum Disorder (ASD) often face unmet needs in psychoeducation, skill-building, and coping with behavioral challenges, particularly in low-resource or task-sharing settings. Existing parent-mediated interventions are either intensive, specialist-led, or focus primarily on psychoeducation, leaving gaps in structured caregiver training and support for parental well-being. Therefore, we aimed to develop an early, play-based, parent-mediated intervention program integrating Naturalistic Developmental Behavioral Interventions (NDBI) and structured play-based strategies to enhance caregiver competence and child developmental outcomes, tailored for use in resource-scarce, brief outpatient settings.

The current study reports the qualitative phase of a broader mixed-methods, proof-of-concept investigation conducted at a premier medical college and its affiliated tertiary hospital within the Armed Forces Medical Services (AFMS), India. Focus group discussions were conducted with purposively selected primary stakeholders (five professionals and five parents of children ASD) supplemented by expert validation to develop a play-based, parent-mediated intervention. Only qualitative findings from the program development phase are presented; quantitative feasibility and outcome data will be reported separately. Thematic analysis of detailed field notes informed program adaptation. The CARER (Communication & social skills, Autism, Restricted and repetitive behaviors management, Empowerment of caregivers, and Responsive play) intervention program was structured into 12 outpatient sessions (45–60 min each), incorporating psychoeducation, modeling, guided parent–child practice, barrier-solving, home tasks, and strategies addressing parental stress. Credibility was ensured through investigator triangulation and member checking, with reporting aligned to Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.

Thematic analysis to understand stakeholders’ perspectives revealed four core domains: (i) psychoeducation, (ii) caregiver training needs, (iii) educational needs of the child, and (iv) parental stress. The CARER program operationalizes these themes into structured, play-based sessions targeting communication, social interaction, restricted and repetitive behaviors, sensory issues, and caregiver empowerment. The program emphasizes parent-mediated delivery and home generalization of skills, balancing feasibility in outpatient settings with developmental relevance for children with ASD.

The CARER program represents an early, brief, and pragmatically designed outpatient parent-mediated intervention framework to support families of young children with ASD. Further piloting and systematic evaluation in larger samples across similar low-resource settings are needed to assess feasibility, acceptability, fidelity of delivery, and potential clinical impact, and to inform ongoing adaptation.

Trial registration: AFMRC PROJECT NO :5337 /2020

The online version contains supplementary material available at 10.1186/s13034-026-01027-2.

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