Development of a parent mediated intervention program for children with autism spectrum disorder

Abstract

Parent-Mediated Intervention (PMI) Program frameworks can be included for developing cost-effective interventions for children with ASD. However, there is a scarcity of such universal intervention programs, particularly in India, that adopts frameworks which target parents and children with autism spectrum disorder. In this background the present study was undertaken to explore the perspectives and felt needs of parents and professionals about a parent mediated intervention program, design the same and conduct its preliminary evaluation to examine the feasibility, receptivity, and changes in outcome variables. The study employed a sequential, mixed-methods design and was conducted under two broad phases, a pilot phase and a main phase. Pilot phase started with getting familiar with the psychological variable in the context of interventions for children with ASD. An extensive analysis of previous studies was done and a focused group discussion with parents and unstructured interview with professionals were conducted for understanding their perspectives on the felt needs, practicability and utility of a parent mediated interventions for children with ASD. These sources of data, helped to prepare a schedule for semi structured interview to be conducted in main phase of the research. The main phase of the research was carried out through three stages, namely, exploratory stage, program design, and preliminary evaluation/program pilot trail run stage. The first stage explored the perspectives of parents (n=28) and professionals (n=23) through semi structured interviews (one-to-one) about felt needs, feasibility, potential content, and structure of the proposed PMI program. Exploratory phase results indicated a consensus among stakeholders about the need for the proposed PMI program with parent and child outcome related components. The stakeholders also perceived that the parents would be receptive of the proposed program. However, long-duration programs were not considered feasible. Awareness about the importance of the program, conviction of parents and family members, appeal of the program, and prior planning were considered as important factors influencing the uptake of the program. Suggestions for potential content could be finalized byemploying ranking of potential content list by parents (n=20) and professional experts (n=10). This potential contents were grouped under two broad categories viz. parent related and child related. In the second stage, the proposed PMI program was developed based on the data from the exploratory phase, literature review, and insights from on-field experiences. The program included five modules on five core themes (psychoeducation and parental support; social adaptive skills; basic communication skills; managing problem behaviours; and fine-motor skills). Fine-tuning of the program (through evaluation by six experts and five parents) and informal pre-pilot runs of the modules resulted in a comprehensive, 2-3 months program deliverable in individual or group setting with providing training on parent and child components, for children with ASD through their parents. During the third stage, the program was pilot tested using a small n, pre-post follow- up design on a sample of children with ASD (n=2) who completed the program and provided assessment data. Significant gains in knowledge about ASD on multiple indices, increase in favorable attitude towards ASD and developmental disabilities, and a significant improvement in self-esteem and confidence following program participation were observed. The gains on self-esteem and confidence were maintained at one-month follow-up. Further, significant improvements were seen on problematic behaviours, activities of daily living such as eating, brushing, toilet skills and dressing, similarly basic communication skills (responding to name calling) from baseline to follow-up on visual analogous scale evaluation. There were no changes on measures of Vineland’s social maturity scale and Indian scale for assessment of autism. However, field observations, and feedbacks indicated significant parental engagement in individual level activities for PMI. There was a significant increase in the proportion of participants recommending professional help-seeking. The qualitative data yielded rich information on perceived gains and strengthened the findings. Observations during the trial indicated that the program as delivered was feasible. Receptivity of the program was high, as indicated through satisfactory rate of expressed interest and lowattrition, high level of engagement of the parents in the program, in addition to perceived program impact and high likelihood of the participants recommending the program to other beneficiaries. Limitations, strengths, and implications of the study for further research and practice have been highlighted.