An Explanation of the Concept of the Care Burden of Family Caregivers of Children with Autism Spectrum Disorder from the Perspective of Family Caregivers

Abstract

Background: Autism spectrum disorder (ASD), characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication, has greatly affected family caregivers, leading to subjective and objective care burdens on them. Objectives: The aim of this study was to explain the care burden of family caregivers of children with ASD from the perspective of family caregivers. Methods: In this qualitative study, 14 family caregivers were purposefully selected. The data were collected using semi-structured, in-depth interviews. The coding of the data was performed using MAXQDA 10 software, and then the data were analyzed by the content analysis method. Results: After the data coding, 266 codes were obtained, which were then classified into three main categories, including context and background, health factors (physical and mental health), and social support (formal and informal support). Conclusions: The results of the study showed that family caregivers bear the caregiving and mental burden of taking care of their autistic children. Besides adding to our body of knowledge and understanding of the problems encountered by caregivers, this study showed that the caregiving burden can be reduced by providing social support for the caregivers of autistic children.