Rethinking ‘Recovery’: A Comparative Qualitative Analysis of Experiences of Intensive Care With COVID and Long Covid in the United Kingdom

Abstract

Introduction

Interpretations of ‘recovery’ from illness are complex and influenced by many factors, not least patient expectations and experiences. This paper examines meanings of ‘recovery’, and how it is strived towards, drawing on the example of COVID-19 infection.

Methods

Drawing on qualitative interviews (n = 93) conducted in the UK between February 2021 and July 2022, we compare adults' accounts of being admitted to an Intensive Care Unit (ICU) with COVID-19 to accounts of being ill with Long COVID, defined as ongoing symptoms for at least 12 weeks postinfection. We conducted a multi-stage comparative analysis using Nvivo to organise and code the data.

Results

We identified similarities and differences in participants' descriptions of their ‘worlds of illness’. For both groups, perceptions of recovery were shaped by the novel, unknown nature of COVID-19. Participants questioned the achievability of full restoration of prior states of health, highlighted the heterogeneity of ‘recovery trajectories’ and described the hard physical and emotional work of adjusting to changed selves. Themes that revealed differences in ‘worlds of illness’ described included the different baselines, waymarkers, and pathways of illness experiences. Differences in other people's responses to their illness were also evident. For ICU participants, hospitalisation, and especially ICU admission, conferred legitimate patient status and authenticity to their symptoms. Family, friends and healthcare professionals acknowledged their illness, celebrated their survival, and granted them latitude to recover. For Long Covid participants, their patient status often lacked comparable authenticity in others' eyes. They reported encountering a lack of recognition and understanding of their ongoing need to recover.

Conclusions

This study highlights how the meanings of illness ascribed by others can influence how recovery is experienced. Our findings highlight the importance of ensuring people are made to feel their illness experiences are legitimate, regardless of hospitalisation status, formal diagnosis or lack of medical knowledge and pathways. They also indicate the value of emphasising the different permutations, and lack of linearity, that recovery can take. This may help to help to guard against a lack of understanding for experiences of recovery which do not meet idealised notions.

Patient or Public Contribution

Both studies were guided by an advisory panel that included patient and public involvement representatives with lived experience of Intensive Care/COVID experience and Long COVID respectively. Through regular meetings with the research teams, the advisory panel had input into all aspects of the study conduct, including recruitment methods and content of the interview topic guide and feedback on preliminary analyses. The Long COVID study also included a lived experience coinvestigator who contributed to data interpretation and analysis.