Can RCTs capture it all?-Need for qualitative studies on parent-mediated interventions for children with Autism Spectrum Disorder.

Abstract

There is a global rise in the prevalence of Autism Spectrum Disorder (ASD) and treatment gap exists across settings. In low-resource settings, there is a lack of professionals and specialist centres for intervention delivery. 'Parent-mediated interventions' is an essential strategy to bridge the existing treatment gap. While RCTs are required to establish evidence base, understanding parental perspectives is pivotal in designing culturally-relevant intervention models, to enhance parental involvement and sustainability. The current paper focuses on the results of a qualitative study to understand the parent perspectives and change process before and after a parent-mediated intervention program. 30 children (2-6 years) recently diagnosed to have ASD, participated in a brief parent-mediated interventions focusing on core-deficits, for 12 weeks. Parents were asked to narrate their experiences and perception of their child's disorder and interventions before and after the intervention program, during one-on-one in-depth interview. A narrative guide was used to generate response. The narratives were recorded verbatim and thematic content analysis was carried out. Repetitive themes reflecting impact of the child's disorder, treatment impact and change process was examined. The broad themes generated included: 1) Change in perception of the child's developmental disorder after involvement in intervention process. 2) Change in parental attitudes from 'lack of hope' to 'positive and appropriate expectations' 3) Gain in knowledge and empowerment 4) Stress reduction 5) Appreciation of micro-gains 6) Validation of 'hands-on training'. Behavioural interventions were the preferred treatment of choice in 66 % of parents, followed by combination therapy in 22 % and pharmacotherapy alone in 12 %. Parent's narratives highlighted the acceptability and feasibility of the parent-mediated interventions in our cultural setting. Understanding parental perspectives, more so when interventions are parent-mediated, is essential for tailoring interventions as well as improving sustainability.