What do parents of children with autism spectrum disorder think about their quality of life? A qualitative study

Abstract

BACKGROUND: Living with children with autism spectrum disorder (ASD) can affect different aspects of parents' physical and mental health and quality of life. This study aimed to identify parents' perceptions of their quality of life and factors influencing such perceptions and investigate how they cope with difficulties in their daily lives. MATERIALS AND METHODS: This study was conducted using a qualitative research design to gain insight into how children with ASD may influence their parents' quality of life. A total of 31 parents and school counselors were selected by the snowball sampling method in autism schools in Tehran in the academic year 2018–2019. Semi-structured interviews were used to collect the data. Each interview was held based on a preprepared guideline by the researchers. In-depth questions were also asked as needed. Finally, the data were analyzed using the content analysis approach. RESULTS: The participants reported a variety of difficulties and crises to cope with in their daily lives. The factors reported to decrease the quality of life were categorized into six main themes and 20 subthemes. The main themes included “family interactions,” “parenting,” “daily living,” “health,” “financial issues,” and “community-related.” CONCLUSIONS: Due to the diversity and multilevel factors affecting the quality of life of parents having children with ASD, it is essential to adopt a comprehensive approach with the participation of all stakeholders in the development, design, and implementation of future interventions.