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

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.