A shock to the (health) system: experiences of adults with rare disorders during the first COVID-19 wave.
Kathleen R BogartAnnelise HartingerMaggie KlausElizabeth JenkinsonPublished in: Orphanet journal of rare diseases (2024)
Limitations in healthcare access and quality were the most frequently described as impacts of COVID-19. Other major negative impacts included exacerbation of symptoms, psychological distress, and a lack of usual social support and reliable information. However, participants also noted silver linings, especially in healthcare. For some, expanded telehealth enhanced their ability to access medical and mental health providers and RD specialists. Finally, many participants hoped that, by highlighting social and health inequities faced by people with RDs and other minorities, the pandemic would prompt greater understanding and policies that could improve the quality of life of the RD community.
Keyphrases
- healthcare
- mental health
- coronavirus disease
- social support
- sars cov
- depressive symptoms
- public health
- health information
- sleep quality
- mental illness
- chronic obstructive pulmonary disease
- respiratory syndrome coronavirus
- physical activity
- social media
- risk assessment
- quality improvement
- climate change
- mechanical ventilation
- respiratory failure