Introduction
Autism spectrum disorder (ASD) is a developmental condition that affects how people communicate and interact with others. ASD can also cause challenges in learning, behavior, and daily living skills. Parents of autistic individuals often face many difficulties and stressors in raising their children, such as finding appropriate services, coping with stigma, and balancing work and family responsibilities. These challenges can affect their quality of life (QOL), which is a subjective measure of how satisfied and happy they are with their life.
Previous studies have shown that parents of autistic individuals have lower QOL than parents of typically developing children or children with other chronic conditions. However, most of these studies were conducted in Western countries, and there is a lack of research on QOL of parents of autistic individuals in other cultural contexts. Therefore, a group of researchers from Hungary and Australia conducted a large-scale study to explore the differences in QOL between parents of autistic individuals and parents of neurotypical individuals in Hungary. They also examined the factors that influence QOL of parents of autistic individuals, such as their socio-demographic characteristics, psychological well-being, their child’s characteristics, and the interventions they received.
Methods
The researchers used a questionnaire to collect data from 842 parents (ASD = 521, NT = 321) of children and adults (aged 0-49 years) with or without ASD. The questionnaire included standardized scales to measure QOL, such as the WHO-QOL BREF and the Quality of Life in Autism questionnaire (QOLA). The questionnaire also asked about the families’ socio-economic and demographic characteristics, the parents’ psychological well-being, the autistic/neurotypical individuals’ characteristics, and the interventions they received.
The researchers used statistical methods to compare the QOL scores between the two groups of parents, and to identify the predictors of QOL in parents of autistic individuals.
Results
The results showed that parents of autistic individuals had significantly lower QOL than parents of neurotypical individuals in all domains of the QOL scales. The domains included physical health, psychological health, social relationships, environment, and autism-specific aspects. The researchers also found that 20 factors were related to QOL of parents of autistic individuals. Some of the factors were:
- Higher income
- Higher education
- Higher self-esteem
- Lower depression
- Lower anxiety
- Lower stress
- Lower perceived burden
- Higher perceived social support
- Higher perceived coping skills
- Higher perceived family functioning
- Lower severity of ASD symptoms
- Higher adaptive behavior of the autistic individual
- Higher satisfaction with the interventions
Conclusion
The study confirmed that parents of autistic individuals have lower QOL than parents of neurotypical individuals in Hungary, and that QOL is influenced by a complex system of factors. The study also highlighted the importance of supporting parents in their role, and of providing health and social services that focus on QOL, in addition to child care. The study suggested that future research should explore the cultural differences and similarities in QOL of parents of autistic individuals across different countries and regions.
FAQ
What is the ABCX model and how was it used in the study?
The ABCX model is a framework that describes how families cope with stress and crisis. It consists of four components: A (stressor), B (resources), C (perception), and X (crisis). The study used this model to design the questionnaire and to select the relevant factors that affect the quality of life of parents of autistic individuals.
What is the difference between the WHO-QOL BREF and the QOLA scales?
The WHO-QOL BREF is a generic instrument that measures quality of life in four domains: physical health, psychological health, social relationships, and environment. The QOLA is a specific instrument that measures quality of life in autism in five domains: physical health, psychological health, social relationships, environment, and autism-specific aspects.
Source:
https://link.springer.com/content/pdf/10.1007/s10803-024-06243-3.pdf