No socioeconomic disparities in the availability of personal care assistance: a population-based cohort analysis of children living with respiratory support

Abstract

Background

Children aged 0–18 years who need long-term respiratory support rely on medical technology and comprehensive medical care. For this care to be provided at home, access to medical and social support and care is essential. In Sweden, the most notable form is personal care assistance (PCA), which is granted based on legislation and individual authority decisions. We aim to explore the impact of socioeconomic factors on the availability of PCAs in children on long-term respiratory support.

Methods

This was a retrospective, population-based cohort analysis of children living with respiratory support in the Swedish Quality Registry for Respiratory Failure (Swedevox) between 2015 and 2021, with crosslinked national registry data on socioeconomic factors and PCA. Associations between socioeconomic factors (country of origin, disposable household income, parents’ educational level and marital status) and having been granted PCA were analysed using multivariable regression models.

Results

Of the 600 included children (mean age 5.4 ± 5.1 years), 171 (29%) were granted PCA for a median 235 h/month (interquartile range 56–453). No associations were found between socioeconomic factors and the likelihood of children receiving PCA. Specifically, family income (tertile 2: OR 1.02, 95% CI 0.6–1.7; tertile 3: OR 0.89, 95% CI 0.5–1.5), parental education level (OR 1.08, 95% CI 0.7–1.6), parents’ marital status (OR 0.91, 95% CI 0.5–1.6), and country of origin (OR 1.33, 95% CI 0.9–2.0) were not associated with PCA receipt.

Conclusion

Among children on long-term respiratory support, 29% were granted PCA, which was not associated with their socioeconomic status. While this suggests that care is provided based on need, the low proportion of children granted PCA raises concerns about whether those judged ineligible receive adequate and equitable support.