Quality of life in parents of children diagnosed with Autism spectrum disorder

Autism is a chronic neurodevelopmental disorder, with a well established impact on quality of life on parents and care givers. Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and interaction with restricted and repetitive patterns of behaviour. The chronic nature of ASD, associated behavioural problems, and frequent comorbidities demand continuous supervision, therapeutic interventions, and medical consultations. These caregiving responsibilities place psychological, social, and economic burden on families, particularly parents, and may adversely affect their quality of life (QoL). Aim of the study: To explore Quality of life in parents of children diagnosed with Autism spectrum disorder. Materials and Methods: The study sample comprised of 100 parents of children with ASD (one or both parents of each child). There was no comparative group as it was an exploratory study. The purposive sampling method was adopted for this study. Parents of children attending the outpatient/ inpatient services of Department of Psychiatry. For socio-demographic variables and clinical variables, scores of individual scales, and WHOQOL-BREF, descriptive statistics in form of mean and SD for continuous variables and frequency for discontinuous variables was applied. Results: The mean age of parents was 36.95 ± 7.06 years. Mean years of education of parents was 13.63 ± 3.36 years. Male comprised 49% and female comprised 51% of the sample. Amongst the religion, majority were Hindus 83%. 74% of the participants belonged to nuclear family setup and 52% were from rural locality. 58% belonged to Upper Middle socioeconomic status. The mean years of age of onset of illness was 2.37 ± 0.90 years and the mean years of duration of illness was 5.88 ± 4.77. 5% of children had a family history of mental illness other than ASD. 47% children had comorbid illnesses in the form of intellectual disability, epilepsy and Hyperkinetic disorder. The score on WHOQoL-BREF was highest for psychological health domain [3.55 (SD-.42)] indicating relatively good psychological well-being and lowest in physical health [3.03 (SD-.46)], indicating borderline or comparatively poorer physical quality of life. Conclusion: This study concludes that having a child with ASD have deteriorating effects on the QoL of parents and care givers as they may feel overwhelmed with the children diagnosed with ASD along with their behaviour problems. The role of education of parents and care givers in maintaining the QoL and health of other family members is essential in addition to family support.