RESUMO
ObjectiveThe COVID-19 pandemic has triggered significant changes in healthcare. As they were mainly driven by professionals and are likely to influence healthcare in the future, it is of utmost importance to consider patients perspectives equally. We, therefore, explored the lived experiences of patients and patient representatives in all six World Health Organisation (WHO) regions regarding healthcare at the time of COVID-19 and extracted suggestions for care redesign after the pandemic. MethodsWe conducted semi-structured interviews until saturation. Thematic analysis followed a modified form of meaning condensation. We established rigour by transcript checking, inter-coder agreement, quote variation and standardised reporting. ResultsDisadvantaged people experienced an unprecedented inequity in healthcare due to the pandemic. The main reasons were the reduction in public care services and limited access to information, transportation, technology and income. Stigmatisation from COVID-19 differed between cultural contexts and ranged from none to feeling "ashamed" and "totally bashed". Participants experienced telehealth as indispensable but with limitations. These included giving "bad news", such as having an eye removed because of melanoma, and the difficulty of providing end-of-life care over the phone. Patient representatives redefined their role and became indispensable influencers throughout the pandemic and beyond. ConclusionWe reached out to individuals with a diversity of perspectives, including minorities and marginalised populations. A systematic exclusion of people with limited technology access increases inequity in healthcare and biases research findings. Since preferences and personal meanings drive behaviour and could be foundations for targeted interventions, they must be considered in all groups of people to increase societys resilience as a whole.
