Unpacking the varied roles of mothers of children with developmental disabilities in South India

Abstract

This research illustrates the diverse parenting roles and responsibilities assumed by mothers while caring for and facilitating the development of their children with Developmental Disabilities (DDs) and associated Complex Communication Needs (CCNs) in South India. Data collected during a participatory action research (PAR) project to develop and evaluate a communication partner training program for parents of children with DDs and CCNs, were analyzed to understand diverse parenting roles and how they relate to early intervention. Applied Thematic Analysis showed that mothers assume various roles as tutors, case managers, disciplinarians, nurses, and orchestrators of home training. Reasons for taking uncommon roles and responsibilities included filling gaps in services and facilitating the habilitation journey of their children with DDs. Role conflicts, role strains, and role overload experienced by participant mothers while trying to parent and provide intervention for their children with DDs were identified.

Points of interest

• This study draws from the perspective of the mothers themselves to provide a unique depiction of their roles navigating habilitation care for their children with Developmental Disability (DD) in India.

• Data illustrated socio-cultural and historical perspectives, beliefs, values, and practices regarding the mothers’ role in children’s habilitation and development.

• The typical maternal roles identified included a tutor, nurse, and disciplinarian in line with existing research. However, the magnitude of responsibilities associated with these roles while caring for a child with developmental disabilities in the local context with limited resources was challenging. Additional roles mothers played included being a case manager for their children and providing home therapy.

• The participant mothers experienced role overload, role strain, and role conflicts in discharging their many responsibilities.

• The need for parents to receive formal and informal support in order to improve their personal quality of life and that of their children is identified.

Keywords:

• Applied thematic analysis
• complex communication needs
• developmental disabilities
• participatory action research
• mother
• India

Disclosure statement

No potential conflict of interest was reported by the authors.