“None of Us Are Lying”: An Interpretive Description of the Search for Legitimacy and the Journey to Access Quality Health Services by Individuals Living with Long COVID

Abstract

Background: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs. Methods: Our study was informed by the Levesque et al’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed. Results: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants. Conclusion: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Experiences of people with long COVID: Symptoms, support strategies and the Long COVID Optimal Health Programme (LC‐OHP)

“…Research into LC is limited, thus identifying the experiences of people with LC 61 is essential to inform and improve practice. Based on our findings and consistent with the associated literature 62 we propose the following recommendations to improve support for those with LC: Increase awareness and understanding of LC for HCPs by providing them with training and education, for example, using the LC‐OHP. Train HCPs to use effective communication skills with LC patients.…”

“…Research into LC is limited, thus identifying the experiences of people with LC 61 is essential to inform and improve practice. Based on our findings and consistent with the associated literature 62 we propose the following recommendations to improve support for those with LC:…”

Long COVID challenges in Brazil: an unfinished agenda for the Brazilian Unified National Health System

“…Despite its importance, long COVID remains underestimated 7 , 12 , 13 , 14 , 15 , 16 . A case definition has not been established yet according to agreed objective criteria that would allow systematic diagnosis in clinical practice, which has led negligence, demobilization, reduced access to healthcare, disability, impairment, stigma, and death 9 , 12 , 14 . This systematization must involve health professionals, researchers, people affected, caregivers/family members, funders, and health managers 6 , 12 .…”

“…Long COVID can affect pediatric individuals of all ages, but it is more common in adult females, with type 2 diabetes mellitus or advanced age, with preexisting comorbidities, without a complete vaccination schedule for COVID-19, with low income, lower educational level, higher severity of the acute phase, and hospitalization in intensive care units (ICU) 3 , 14 , 18 . However, more than 30% of people with long COVID may have no pre-existing conditions 16 .…”

“…There are persistent barriers in health services for diagnosis and longitudinal care of people with long COVID, particularly those with a higher susceptibility to infection. Studies on health needs and access to and quality of health services should be prioritized, as well as assessment and monitoring of economic impact 6 , 14 , 22 , 25 . The time of diagnosis of acute SARS-CoV-2 infection is an opportunity for qualified counseling due to the potential risk of long COVID, with patient empowerment focusing on empathic listening, awareness, responsibility, and health surveillance.…”