Evaluation of the quality of life and stress levels of parents/caregivers of adolescents and young adults with autism spectrum disorder in Serbia

Abstract

Background: Families of individuals with autism spectrum disorder (ASD) may experience higher levels of stress and lower quality of life (QoL), taking into account their complex needs and daily challenges, especially when faced with discrimination and unavailable support services. This study aimed to examine the QoL and stress levels of parents/caregivers of adolescents and young adults aged 15–30 years and determine the relationship with support systems in Serbia. Subjects and methods: The study included 74 parents/caregivers of adolescents and young adults with ASD. The subjects were recruited from the database of the Institute for Mental Health in Belgrade. We used the following instruments: WHO Quality of Life-BREF, the Parental Stress Scale, and the Caregiver Needs Survey. Results: The obtained results show statistically significant relationships between stress levels and factors such as unavailable services (p=0.036), lack of information (p<0.0005), financial difficulties (p<0.0005), discrimination (p=0.004), and feelings of helplessness (p=0.018) due to the child’s ASD diagnosis. A negative correlation is found between all QoL domains and the level of stress, with p<0.0005 for physical health, psychological health, and environment domain and p = 0.001 for the domain of social relationships. Conclusion: The obtained data point out to the most significant socio-economic factors and factors within the support system in Serbia that affect the QoL and stress levels of parents/caregivers of youth with ASD. It can be used to create a more specific planning of organizational services, oriented towards the most problematic aspects of care for persons with ASD and their families.