Covid Shielding Stories: Co-Produced Research to Understand the Voice of People Living with Arthritis and Auto-Immune Disease

ABSTRACT

Background/Aims Up to one-third of people with rheumatological conditions were required to 'shield' from COVID-19. This co-produced, qualitative research aimed to understand experiences of the shielding process and the impact of shielding upon people's lives. Methods Adults who shielded due to rheumatological disease participated in audio-recorded interviews and focus groups (FGs). Framework analysis combined inductive and deductive approaches. Creative materials were collected. Two patient contributors proposed the study, are co-investigators, and conducted the research alongside a clinical academic and four-member patient advisory group. COREQ and GRIPP2 guidelines were followed. Full ethical approval was granted by the University of Manchester Research Ethics Committee (2021- 11544-20348). Results Data were generated from 28 interview and 12 FG participants between October 2021-January 2022. 15 people contributed creative materials. Characteristics included 44/48 (85%) female, ages 18-75 years, non-white 10/48 (21%), all UK regions (Table 1). Corbin & Strauss's theory, 'Three lines of work Managing chronic illness', frames the findings. Shielding increased and shifted the burden of 'illness work' onto patients, e.g., in gaining access to vaccines and navigating risks and uncertainties due to COVID-19. 'Life work' was increased as participants struggled to access food and medicines. Participants' self-identity was re-appraised in the context of their illness. Many feared for their lives because of their diagnosis for the first time, increasing 'biographical work'. Participants' perceived value to society changed over time feeling equal to the general population at the first UK national lockdown;abandoned by society due to 'freedom day' and formal shielding's end. 'Emotional work' was added to 'Three lines of work'. Shielding notification induced fear, stress, devastation, shock and disbelief, balanced by a feeling of being protected. Emotions experienced include anxiety, guilt, anger and frustration. Mental health problems were experienced, often for the first time. Many continued to shield beyond formal shielding's end. Conclusion This co-produced, qualitative research highlights experiences and impact of shielding including increased illness, life, biographical and emotional work. Clearer, personalised information would help shielders to understand their risk and vaccine response, informing re-integration into society.