Support after COVID-19 study: a mixed-methods cross-sectional study to develop recommendations for practice

Abstract

Objectives of study stage 1 were to: explore people's experiences of illness due to COVID-19 while feeling socially isolated or socially isolating; identify perceptions of what would support recovery; and synthesise insights into recommendations for supporting people after COVID-19. Study stage 2 objectives were to engage stakeholders in evaluating these recommendations and analyse likely influences on access to the support identified. Design A two-stage, multimethod cross-sectional study was conducted from a postpositivist perspective. Stage 1 included an international online survey of people's experiences of illness, particularly COVID-19, in isolation (n=675 full responses). Stage 2 involved a further online survey (n=43), two tweetchats treated as large online focus groups (n=60 and n=27 people tweeting), two smaller focus groups (both n=4) and one interview (both using MS teams). Setting Stage 1 had an international emphasis, although 87% of respondents were living in the UK. Stage 2 focused on the UK. Participants Anyone aged 18+ and able to complete a survey in English could participate. Stage 2 included health professionals, advocates and people with lived experience. Main outcome measures Descriptive data and response categories derived from open responses to the survey and the qualitative data. Results Of those responding fully to stage 1 (mean age 44 years); 130 (19%) had experienced COVID-19 in isolation; 45 had recovered, taking a mean of 5.3 (range 1-54) weeks. 85 did not feel they had recovered; fatigue and varied 'other' symptoms were most prevalent and also had most substantial negative impacts. Our draft recommendations were highly supported by respondents to stage 2 and refined to produce final recommendations. Conclusions Recommendations support access to progressive intensity and specialism of support, addressing access barriers that might inadvertently increase health inequalities. Multidisciplinary collaboration and learning are crucial, including the person with COVID-19 and/or Long Covid in the planning and decision making throughout.