"I'm in Hell …": Experiences of Unmet Health Care Needs Among People with Pre-Existing Disability and Long COVID

The unmet health care needs of people with pre-existing disabilities who have long COVID are understudied. During the COVID-19 pandemic, people with disabilities experienced barriers to accessing care and supplies needed to prevent and treat COVID-19. Once they had contracted COVID-19, people with disabilities were more likely to develop long COVID compared with people without disabilities. Using the 2022 National Survey on Health and Disability, this study aimed to compare how unmet health care needs differ among people with pre-existing disabilities with and without long COVID. We examined bivariate associations between unmet health care needs and respondents' demographic characteristics and responses to open-ended survey questions. About 73% of respondents with long COVID reported unmet health care needs compared with 62.6% of respondents without long COVID. Four key themes emerge from open-ended responses: exacerbation of existing disability, navigating the health care system, gaslighting by health care providers, and financial burdens.

Authors

Publication Details

Journal
Journal of Health Care for the Poor and Underserved
Published
2025-05-01
DOI
https://doi.org/10.1353/hpu.2025.a959114
Citations
2
Primary Topic
Long-Term Effects of COVID-19
Type
article
Field-Weighted Citation Impact
2.78

Funders

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article

"I'm in Hell …": Experiences of Unmet Health Care Needs Among People with Pre-Existing Disability and Long COVID

Darcy Sullivan, Noelle K. Kurth, Jean P. Hall, Kelsey S. Goddard
2 citations
Journal of Health Care for the Poor and Underserved
Long-Term Effects of COVID-19
2.78
article

"I'm in Hell …": Experiences of Unmet Health Care Needs Among People with Pre-Existing Disability and Long COVID

Darcy Sullivan, Noelle K. Kurth, Jean P. Hall, Kelsey S. Goddard
article en
2 citations

Abstract

The unmet health care needs of people with pre-existing disabilities who have long COVID are understudied. During the COVID-19 pandemic, people with disabilities experienced barriers to accessing care and supplies needed to prevent and treat COVID-19. Once they had contracted COVID-19, people with disabilities were more likely to develop long COVID compared with people without disabilities. Using the 2022 National Survey on Health and Disability, this study aimed to compare how unmet health care needs differ among people with pre-existing disabilities with and without long COVID. We examined bivariate associations between unmet health care needs and respondents' demographic characteristics and responses to open-ended survey questions. About 73% of respondents with long COVID reported unmet health care needs compared with 62.6% of respondents without long COVID. Four key themes emerge from open-ended responses: exacerbation of existing disability, navigating the health care system, gaslighting by health care providers, and financial burdens.

Journal of Health Care for the Poor and UnderservedVol. 36(2)
Australian Government, National Institute on Disability, Independent Living, and Rehabilitation Research
Openalex Percentile: Top 11%
Long-Term Effects of COVID-19
2.78
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