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

Florén, Johan ; Israelsson-Skogsberg, Åsa ; Ekström, Magnus LU orcid ; Lindahl, Berit ; Markström, Agneta and Palm, Andreas (2025) In International Journal for Equity in Health 24(1).
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... (More)

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.

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author
; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Chronic disease, CPAP, HMV, NIV, Respiratory insufficiency, Social inequalities
in
International Journal for Equity in Health
volume
24
issue
1
article number
141
publisher
BioMed Central (BMC)
external identifiers
  • pmid:40390045
  • scopus:105005528070
ISSN
1475-9276
DOI
10.1186/s12939-025-02511-5
language
English
LU publication?
yes
id
d7a5fde8-2f82-40a5-88e8-bd3815ccc9bd
date added to LUP
2025-07-14 11:55:25
date last changed
2025-07-15 03:00:03
@article{d7a5fde8-2f82-40a5-88e8-bd3815ccc9bd,
  abstract     = {{<p>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.</p>}},
  author       = {{Florén, Johan and Israelsson-Skogsberg, Åsa and Ekström, Magnus and Lindahl, Berit and Markström, Agneta and Palm, Andreas}},
  issn         = {{1475-9276}},
  keywords     = {{Chronic disease; CPAP; HMV; NIV; Respiratory insufficiency; Social inequalities}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{International Journal for Equity in Health}},
  title        = {{No socioeconomic disparities in the availability of personal care assistance : a population-based cohort analysis of children living with respiratory support}},
  url          = {{http://dx.doi.org/10.1186/s12939-025-02511-5}},
  doi          = {{10.1186/s12939-025-02511-5}},
  volume       = {{24}},
  year         = {{2025}},
}