A phenomenological study of psychosocial challenges faced by parents of children with neurodevelopmental disabilities: a qualitative study

Abstract

Raising a child with neurodevelopmental disabilities (NDDs) like Autism Spectrum Disorder, Intellectual Disability or Specific Learning Disability is particularly challenging from a psychosocial perspective and extends beyond mere caregiving. Given the Indian socio-cultural scenario, there is lack of awareness, stigma and negligible institutional support that add to parental stress and emotional burden. Accurate comprehension of such challenges is crucial to formulate evidence-based targeted psychosocial interventions to strengthen family resilience and inclusive participation in education and society. The aim of the present study is to explore and interpret the lived psychosocial experiences of parents of children with neurodevelopmental disabilities (NDDs). A phenomenological qualitative research design was used. Dyadic interviews were carried out with 10 parents (fathers and mothers) of Children with Neurodevelopmental Disabilities within the age range 6–12 years residing in Delhi – National Capital Region, India. A self-made Psychosocial Challenges Interview Schedule (PCIS) was made and validated by 24 professionals. The PCIS evaluates 6 domains, namely, Sense of Competence and Achievement, Social Interaction and Peer Relationships, Encouragement and Motivation, Emotional Understanding and Coping, Self-Esteem and Identity Formation, Role of Family and Environment. Data were transcribed precisely and coded thematically using Braun & Clarke’s (2006) approach to extract recurring psychosocial themes. There were five primary themes identified – emotional distress and caregiver burnout; isolation and stigma; lack of awareness and guidance; institutional barriers and access to support; and coping and social support systems. Parents strongly articulated a need for formal psychosocial counselling, training, modules and community-based support systems. The research emphasizes parent’s complex psychosocial realities in raising children with neurodevelopmental disabilities and underlines the compelling necessity for a structured, culturally appropriate psychosocial training program / module. The findings provide qualitative support for designing evidence-based intervention to enhance parent’s well-being and foster inclusive educational participation.