A qualitative study on perspective of parents of children with autism on the nature of parent–professional relationship in Kerala,India

Abstract

This study explored the nature of relationship between parents of children with autism and professionals who provide therapy-based service for autism in Kerala, India. Thematic analysis of semi-structured interview with 21 parents of children with autism whose age ranged between 5.8 and 17.3 years helped identify three themes related to the nature of parent–professional relationship—information, responsibility, and personal growth. There was a dearth of scheduled, in-depth, and personalized one-on-one interaction between the parent and the professional. Though parents were involved hands on in their child’s training under professional direction, they remained mere information providers in decision making. The parent–professional relationship did not nurture parent’s self efficacy. This led to parents feeling inadequate to provide for their child’s developmental needs and being apprehensive about adulthood. The customary nature of parent–professional relationship observed may be a reflection of the collectivist culture in India. The need for parent-mediated interventions and for it to focus on enabling parents to break cultural barriers that might be holding them back from partnering with professionals on equal terms is discussed.

Lay Abstract

This study explored the nature of relationship between parents of children with autism and professionals who provide therapy-based services for autism in Kerala, India. Given the shortage of professionally qualified therapists and educators (particularly in the case of autism) in low- and medium-income countries, parent-mediated interventions where professionals and parents work as partners are recommended as an effective means to meet the demand. However, for parent-mediated interventions to be effective, we first need to understand the customary nature of parent–professional relationship and develop the intervention accordingly. It is within this context that parents of 21 children with autism whose age ranged between 5.8 and 17.3 years were interviewed in order to understand the customary nature of parent–professional relationship. There was a dearth of scheduled, in-depth, and personalized one-on-one interaction between the parent and the professional. Though parents were involved hands on in their child’s training under professional direction, they remained mere information providers in decision making. The parent–professional relationship did not nurture parent’s self efficacy. This led to parents feeling inadequate to provide for their child’s developmental needs and being apprehensive about adulthood. The customary nature of parent–professional relationship observed may be a reflection of the collectivist culture in India. The findings suggest that parent-mediated interventions will need to focus on enabling parents to break cultural barriers that might be holding them back from partnering with professionals as equals.