Patients’ lived experience and reflections on long COVID: an interpretive phenomenological analysis within an integrated adult primary care psychology NHS service

Abstract

Background Long Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology. Results A total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping. Conclusion This study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.

COVID-19 Patients' Experiences during the Pandemic: A Phenomenology Study

“…The participants listed having symptoms like tongue numbness, low blood pressure, coughing out blood, diarrhoea, speaking difficulties, blocked nose, throat obstruction, sleeping difficulties, and breathing difficulties. These symptoms were also corroborated by the participants in the research conducted by Skilbeck et al [41] and Alkaissi et al [42].…”

Different but the Same: Common Themes in Illness Experience Among People With Diverse Long COVID Symptoms and the Potential Benefits of Virtual Group Medical Visits

“…This manuscript also contributes to a growing body of knowledge about the lived experience of long COVID. 5 , 15 – 19 Among participants, there was a wide variety of symptoms and symptoms patterns. Participants’ symptoms were similar to those reported in other studies of patients with long COVID, including postexertional malaise.…”

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish General Practitioners’ and people living with Long COVID: a qualitative study

“…There is a growing body of research on the lived experience of PwLC [18 19] including their self-reported barriers to accessing healthcare [13 14]. Until recently, however [15], none have focussed on community rehabilitation.…”