Lived-in Experience Among Caregivers of Autistic Children: A Qualitative Study from South India

Background: Autism is a developmental disorder that impairs the skills related to behavior, communication, interaction, and learning. This study was undertaken to understand the difficulties faced by caregivers in various aspects of life while taking care of children with autism and their unique life experiences. Methods: After obtaining ethical approval, the study was conducted in a tertiary care hospital in Bangalore, India. An informed consent and a subject information sheet were taken to obtain permission from the subjects. A baseline proforma was prepared for collecting the demographic data for both autistic children and the caregivers. An in-depth, face-to-face, semi-structured interview that consisted of around 10 questions was conducted for 30 minutes. The interview was recorded, later transcribed verbatim, and extracted into specific themes and subthemes. Results: The lived-in experiences throw light on many emotional, social, psychological, and physical distress the caregivers go through on a day-to-day basis. The daily hassles of every caregiver are unique and challenging. Five themes and corresponding subthemes were extracted as follows: emotional meltdown, change in family dynamics, spiritual transition, perceived social burden, and perception of a child’s future. Conclusion: The caregivers of children with autism faced various challenges such as physical and emotional turmoil, financial constraints, and the deprivation of a healthy social life almost every day. Interventional measures such as nurse-led clinics, counseling measure, and planning training sessions for nurses to deal with the various issues faced by the caregivers could be taken up to address the growing concerns of caregivers of children with autism.