Work

Caregiver burden and quality of life in parents of children with intellectual disability and autism spectrum disorder: A cross-sectional comparative study

Year: 2026

Type: article

Abstract: Objectives Parents of children with intellectual disability (ID) and autism spectrum disorder (ASD) frequently report high caregiver burden, stress, and a diminished quality of life (QoL), yet comparative data are scarce in low-resource settings. This study evaluated and compared caregiver stress, burden, and QoL among parents of children with ID and ASD. Material and Methods A cross-sectional study was conducted at a tertiary psychiatric center in India. Ninety parents of children aged 5–18 years with DSM-5-diagnosed ID (n = 60) or ASD (n = 30) were recruited from outpatient services through non-probability purposive sampling. Exclusion criteria included parental psychiatric illness, severe medical illness, or unwillingness to participate, and children with significant neurological comorbidities. Sociodemographic and clinical information were obtained using a semi-structured proforma. Parenting stress was measured with the Parenting Stress Scale; caregiver burden was assessed using both the Kingston Caregiver Stress Scale (KCSS) and the Family Burden Interview Schedule (FBIS). Parental quality of life was evaluated using the WHOQoL-BREF (physical, psychological, social, and environmental domains). Statistical analyses were performed using SPSS, with t tests or Mann–Whitney U tests for group comparisons and effect sizes calculated. Results Both groups were comparable in age, marital status, family structure, and parental occupation; however, parents of children with ID were more often from lower socioeconomic strata (p = 0.027). Mean Parenting Stress Scale scores did not differ significantly between ID (52.57 ± 14.65) and ASD (53.13 ± 10.38) groups (p = 0.832), indicating similar perceived parenting stress. Caregiver burden measured by KCSS and FBIS was also comparable between groups (KCSS medians 35 vs 36; FBIS means 35.47 vs 37.27; p > 0.07). In contrast, parental QoL differed markedly. Across all WHOQoL-BREF domains, parents of children with ASD reported significantly lower scores than those of children with ID: physical domain means 19.80 vs 34.60 (p < 0.001); psychological 19.84 vs 33.05 (p < 0.001); social 21.00 vs 31.84 (p < 0.001); and environmental 25.68 vs 32.01 (p < 0.001). Effect sizes ranged from medium to large (0.38–0.63), demonstrating substantial QoL disparities. Conclusion While parenting stress and caregiver burden were similar among parents of children with ID and ASD, quality-of-life deficits were markedly greater in parents of children with ASD. These findings highlight the need for targeted psychosocial interventions to improve the well-being of caregivers, particularly in families of children with ASD. Screening for socioeconomic disadvantage and providing support services may mitigate the adverse impact on caregivers’ physical, psychological, social, and environmental well-being.

Source: Future Health

DOI: 10.25259/fh_71_2025

Authors: Charvi Kalra, Deepak Kumar, Pratibha Gehlawat, Shahzadi Malhotra

Institution: Institute of Human Behaviour and Allied Sciences

Language: English

Topic: Family and Disability Support Research

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDGs: Good health and well-being, Reduced inequalities

Open Access status: hybrid

OpenAlex ID: W7128782249