A cycle of invisibilisation: a qualitative study of Brazilian health system factors shaping access to long COVID care.

Publication date: Dec 22, 2024

Long COVID (LC), an often-debilitating infection-associated chronic condition (IACC), affects millions of people globally. Globally, LC patients struggle to access timely, appropriate care, often experiencing disbelief, misunderstandings or being diverted from healthcare. Few studies have examined health system factors influencing LC healthcare access, especially in the Global South. Drawing on the concept of candidacy, we examine health system factors influencing access to LC care in Brazil’s public healthcare system (Sistema cDAnico de SacFAde, SUS) and theorise implications for equitable access to public healthcare for IACCs globally. We conducted a patient-engaged, qualitative study in the city of Rio de Janeiro. 29 individual semi-structured interviews were conducted with SUS professionals from administrative leaders to multidisciplinary primary and specialist care staff (November 2022 to July 2023). Verbatim transcripts were analysed using a pragmatic thematic analysis. LC patients’ candidacy for care is invisibilised within SUS through multiple, interacting processes. Interplay of an over-burdened health system, prioritisation of resources in response to (flawed) evidence of demand, misalignment of LC patient capacities and demands of navigating fragmented services, complex referral processes, professionals’ lack of LC knowledge and disregard of the severity and morbidity of a chronic condition amid acute demands, led to the under-recognition of LC by healthcare professionals. Professionals’ under-recognition perpetuates administrators’ de-prioritisiation of resources, policies and training necessary to ensure access to appropriate care, creating a cycle of invisibilisation. Urgent action to disrupt a cycle of invisibilisation is essential to mitigate patients’ suffering and intensification of inequalities. Disrupting this pernicious cycle requires more than narrow clinical education efforts. Improved surveillance, education, patient involvement, attention to moral injury and building on existing multidisciplinary strengths may enhance access to LC care. Doing so offers wider benefits beyond patients with LC. We call for a paradigm shift in clinical approaches to IACCs.

Open Access PDF

Concepts Keywords
Brazil Brazil
Debilitating Brazil
Healthcare COVID-19
July Female
Health Services Accessibility
Health Services Accessibility
Health systems
Humans
Male
Post-Acute COVID-19 Syndrome
Post-Infectious Disorders
Qualitative Research
SARS-CoV-2

Semantics

Type Source Name
disease MESH long COVID
disease MESH infection
disease MESH chronic condition
drug DRUGBANK Ribostamycin
drug DRUGBANK Etoperidone
disease MESH morbidity
disease MESH moral injury
disease IDO history
disease IDO intervention
drug DRUGBANK Trestolone
disease IDO production
pathway REACTOME Translation
disease IDO quality
disease MESH COVID 19
disease MESH uncertainty
disease MESH malnutrition
disease MESH violence
drug DRUGBANK Coenzyme M
disease MESH syndrome
disease MESH confusion
disease MESH cognitive impairment
disease MESH joint pain
disease IDO entity
disease MESH memory loss
disease IDO process
disease MESH sequelae
disease MESH infectious disease
pathway REACTOME Infectious disease
disease MESH chest pain
disease IDO symptom
disease MESH tuberculosis
pathway KEGG Tuberculosis
disease MESH syphilis
disease MESH acute disease
disease MESH tics
pathway KEGG Coronavirus disease
disease MESH Myalgic Encephalomyelitis
drug DRUGBANK Amifampridine
disease MESH abnormalities
disease MESH noncommunicable diseases
disease IDO acute infection
disease MESH cerebrovascular accident
disease MESH Dengue
disease MESH Congenital Zika Syndrome
disease MESH heart disease
disease MESH fibromyalgia
disease MESH Health Services Accessibility
disease MESH Post-Infectious Disorders

Original Article

(Visited 1 times, 1 visits today)