Eur J Pediatr. 2026 Jun 23;185(7):519. doi: 10.1007/s00431-026-07124-w.
ABSTRACT
Childhood disability is a significant health concern with profound implications for caregivers’ well-being. This study examines the association between children’s cumulative disability profile, encompassing disability status, types, and multiplicity, and caregivers’ health-related quality of life (HRQoL) in a cross-sectional Australian setting. Utilising data from the Longitudinal Study of Australian Children (LSAC), this study examined the association between children’s cumulative disability profile and caregivers’ cross-sectional HRQoL. Caregivers’ HRQoL was assessed using the Assessment of Quality of Life-8 Dimensions (AQoL-8D) instrument. Multivariable linear regression models were estimated to assess these associations, adjusting for sociodemographic and economic covariates. Overall, 25% of children experienced at least one form of disability. A significant lower mean utility score was observed (mean difference = 0.034; 95% confidence interval [CI], [0.018, 0.050]; p < 0.001) among caregivers of children with disabilities compared with caregivers of children without disabilities. After adjusting for covariates, caregivers of children with disabilities had significant lower utility (β = – 0.0230; 95% CI, [- 0.0376, – 0.0084]; p = 0.002), physical super dimension (β = – 0.0339; 95% CI, [- 0.0497, – 0.0182]; p < 0.001), and psychological super dimension (β = – 0.0181; 95% CI, [- 0.0353, – 0.0009]; p = 0.039) scores than caregivers of children without disabilities. Similarly, children experiencing physical, sensory, psychosocial disabilities, or multiple coexisting disabilities were associated with lower HRQoL among their caregivers compared with caregivers of children without disabilities.
CONCLUSION: Childhood disability is associated with a lower HRQoL for the caregivers. These findings highlight the need for targeted support services, particularly for families caring for children with physical, sensory, psychosocial, and multiple disabilities, and provide estimates of reductions in health state utility scores to inform future cost-utility analyses of caregiver-focused interventions.
WHAT IS KNOWN: • Caregivers of children with disabilities report lower health-related quality of life (HRQoL) and significantly higher caregiving time demands than caregivers of children without disability. • Despite these recognised challenges, there is a paucity of population-level evidence in the Australian context on how specific child cumulative disability profiles, including status, types, and multiple coexisting conditions, are associated with caregiver cross-sectional HRQoL.
WHAT IS NEW: • Using a nationally representative Australian cohort, this study identifies a significant disparity in health state utility scores between caregivers of children with disabilities and caregivers of children without disabilities. • Beyond overall cumulative disability status, specific categories (physical, sensory, and psychosocial), and the presence of multiple coexisting disabilities are significantly associated with lower caregivers’ HRQoL across both physical and psychological dimensions. • The findings provide specific estimates of reductions in health state utility scores, which are essential for informing future cost-utility analyses of targeted policy interventions for Australian families.
PMID:42337140 | DOI:10.1007/s00431-026-07124-w
