ABSTRACT
Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored. Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.
ABSTRACT
Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored. Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic;(2) frustration, dismissal, and gaslighting in healthcare interactions;and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.
ABSTRACT
The global COVID-19 pandemic has driven innovations in methods to sustain initiatives for the design, development, evaluation, and implementation of clinical support technology in long-term care settings while removing risk of infection for residents, family members, health care workers, researchers and technical professionals. We adapted traditional design and evaluation methodology for a mobile clinical decision support app - designated Mobile Application Information System for Integrated Evidence ("MAISIE") - to a completely digital design methodology that removes in-person contacts between the research team, developer, and nursing home staff and residents. We have successfully maintained project continuity for MAISIE app development with only minor challenges while working remotely. This digital design methodology can be implemented in projects where software can be installed without in-person technical support and remote work is feasible. Team skills, experience, and relationships are key considerations for adapting to digital environments and maintaining project momentum.