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.

Rights

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Cite as

Bulley, C., Tyagi, V., Curnow, E., Nicol, K., Salisbury, L., Stuart, K., McCormack, B., Magowan, R., Sagan, O. & Dewing, J. 2022, 'Support after COVID-19 study: a mixed-methods cross-sectional study to develop recommendations for practice', BMJ Open, 12(8), article no: e056568. http://dx.doi.org/10.1136/bmjopen-2021-056568

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Last updated: 06 September 2022
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