Ummeed Parent Program for Autism (UPPA) - a Culturally Appropriate Parent-Mediated Intervention Program for Parents of Children with Autism in Mumbai, India

Background: Parent mediated programs to teach social communication to children with autism are important for LMIC countries like India where there is a huge discrepancy between requirement for and access to services. Few models of parent mediated interventions exist that are applicable in the context of a resource poor setting viz India. 

Objectives: To identify challenges in the implementation of an existing parent mediated intervention program& to develop an intervention appropriate for the Indian setting by incorporating modifications to address the challenges.   

Methods: 70 families with children with autism participated in a manualised, parent mediated program (Teaching Social Communication to Children with Autism by Ingersoll & Dvortcsak, 2010; Ingersoll & Dvortcsak,2006; Ingersoll & Wainer, in press). Parents were trained to increase child’s engagement, attention, awareness and initiations through group lectures, video clips, modelling, therapist guided parent-child interaction, and home-work. 

Initial challenges included high rates of parent attrition due to time commitment, requiring reduction of duration from the original 12 to 5 weeks. Second, challenges of language and low levels of literacy necessitated translation of lectures and parent handouts from the original English into Hindi. While original concepts were all retained, terminologies used were simplified along with inclusion of more informal teaching methods like modelling and hands-on demonstrations. Third, lack of caregiver awareness about autism as a condition in general and its associated developmental and behavioural challenges in specific often took away the focus from key teaching areas during therapist mediated parent child interaction sessions and was addressed by addition of a psychoeducational component  at the beginning of the program . Fourth, traditional hierarchical family structures often hindered effective implementation of strategies at home. Extended family members, in particular the paternal grandparents, were actively encouraged to attend and participate in didactic as well as therapist mediated sessions. Fifth, financial challenges due to lack of state funding was countered by external funding and provision of child care facilities at the center itself.

Results: Post program assessment showed that Indian caregivers found the program comprehensible and applicable (on 5 point Likert scales, Understanding how to use techniques at home µ = 4.8; Clear, understandable, helpful coaching µ = 4.7). Parents appeared more confident of playing and interacting with their child (µ=4.3), implementing strategies at home (µ=4.6), and helping other family members to engage with their child (µ=4.2). Parent perception of their child’s skills (Increase in Social engagement µ = 4.4, Improvement in communication and language skills µ = 4.6) showed significant benefits. Parent statements at the end of the program consistently reported better engagement, as well as improvement in their children’s ability to communicate.

Conclusions: UPPA is a unique, culturally appropriate, parent mediated intervention, targeted towards increasing social communication for families with children with autism in LMIC countries that merits further study. Future directions for research include conducting long term follow up of participating families as well as documenting and manualising of the modified format   to facilitate training of trainers such as community workers for its use in similar settings across LMIC countries.