Lived experience of patients with Long COVID: a qualitative study in the UK

Abstract

BackgroundLong COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived experience of patients. Currently, there is a paucity of research documenting the day-to-day experiences of patients living with Long COVID.ObjectiveTo explore the lived experience of Long COVID patients.Study designLongitudinal, observation study.SettingAn inductive, data-driven, qualitative approach was used to evaluate hand-written diaries obtained from individuals who had been referred to a Derbyshire Long COVID clinic.Participants12 participants (11 females, age 49±10 years, 11 Caucasians) were recruited. Participants were included if they had a previous confirmed or suspected COVID-19 infection with ongoing recovery, >18 years old, understood the study requirements and provided informed consent.MethodParticipants were directed to complete self-report diaries over 16 weeks. Responses were transcribed verbatim and analysed using thematic analysis.ResultsThree key themes were highlighted: (1) understanding who helps patients manage symptoms, (2) daily activities and the impact on quality of life and health status and (3) the effect of turbulent and episodic symptom profiles on personal identity and recovery.ConclusionsThe novel challenges presented by Long COVID are complex with varying inter-related factors that are broadly impacting functional status and quality of life. Support mechanisms must incorporate the lived experiences and foster true collaborations between health professionals, patients and researchers to improve patient outcomes.Trial registration numberNCT04649957.