"I don't know what to do or where to go". experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK.

Abstract

Background: In July 2022 it was estimated 2 million people in the UK have self-reported Long Covid (LC).1 Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC. Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and participation: 40 interviews were conducted with people with LC alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford, as part of a UK wide qualitative longitudinal study. Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorised the healthcare access experiences of participants into five main types: 1) being unable to access primary care 2) accessing primary care but receiving (perceived) inadequate support 3) extreme persistence 4) alternatives to mainstream healthcare 5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macro structural issues further exacerbated by the pandemic. Conclusion: To better support people with LC the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to GP access are required; especially as GPs are the first line of support for people living with LC. Patient and public involvement: A PPI group is engaged at regular intervals in the project.

Awareness and perceptions of Long COVID among people in the REACT programme: Early insights from a pilot interview study

“…A key challenge reported by participants was the unpredictable or fluctuating nature of their symptoms. Our findings on symptom experience echo the voices of those living with persistent symptoms [ 6 , 8 , 9 ] and concurrent research [ 16 , 17 ].…”

“…The lack of ethnic diversity in health research participation, and the existing barriers has been widely documented [ 19 ]. A recent rapid review highlighted a lack of diversity in Long COVID qualitative studies and encouraged researchers to prioritise recruitment of ‘patients from diverse social and ethnic backgrounds to better represent the demographics of wider society’ [ 17 ].…”

‘I don't know what to do or where to go’. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK

“…As such, LC is believed to be the first illness constructed by patients. 2,4 Despite the increasing prevalence of LC, its definitions remain vague and are continuously evolving. Adopting the WHO definition, NICE states that the term LC 'is commonly used to describe signs and symptoms that continue to develop after acute COVID-19.…”

“…Thus, they mobilized online via social media to create awareness of their condition. As such, LC is believed to be the first illness constructed by patients 2,4 . Despite the increasing prevalence of LC, its definitions remain vague and are continuously evolving.…”

Battling the unknown: Using composite vignettes to portray lived experiences of COVID-19 and long-COVID

“…The aim of creating these composite vignettes was to highlight and portray the day-to-day non-biological effects and wider ramifications that contracting and living with COVID-19 had on individuals during the early stages of the pandemic, from the point of their symptom onset through the course of their acute and ongoing long-term pursuit of recovery. The vignettes highlight: i) the potential negative implications of not addressing the psychological effects of COVID-19, which may contribute to the impact of ongoing physical symptoms [32]; ii) the lack of linearity not only in symptom development but also the trajectory of chasing recovery -the unpredictability and variability of persistent, fluctuating, relapsing, or new symptoms present a variety of challenges that can shape an individual's experience in a multitude of different ways [11]; and iii) the ongoing 'lottery' of access to healthcare services and the secondary impact on individuals' lives. Therefore, in conclusion, this novel study presents the lived experience of COVID-19 and consequent long-COVID in participants' own words, revealing the highly variable, but generally devastating, impacts COVID-19 has had across many facets of daily living.…”