A cycle of invisibilisation: a qualitative study of Brazilian health system factors shaping access to long COVID care DOI Creative Commons
Emma‐Louise Aveling, Bárbara do Nascimento Caldas, Brenda Sabaine

и другие.

BMJ Global Health, Год журнала: 2024, Номер 9(12), С. e017017 - e017017

Опубликована: Дек. 1, 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 healthcare access, especially in the Global South. Drawing on concept candidacy, we examine care Brazil's public (Sistema Único de Saúde, SUS) and theorise implications for equitable IACCs We conducted a patient-engaged, qualitative study city Rio Janeiro. 29 individual semi-structured interviews were with SUS professionals administrative leaders multidisciplinary primary specialist staff (November 2022 July 2023). Verbatim transcripts analysed using pragmatic thematic analysis. patients' candidacy is invisibilised within through multiple, interacting processes. Interplay over-burdened system, prioritisation resources response (flawed) evidence demand, misalignment patient capacities demands navigating fragmented services, complex referral processes, professionals' lack knowledge disregard severity morbidity amid acute demands, led under-recognition by professionals. Professionals' perpetuates administrators' de-prioritisiation resources, policies training necessary ensure creating cycle invisibilisation. Urgent action disrupt invisibilisation essential mitigate suffering intensification inequalities. Disrupting this pernicious requires more than narrow clinical education efforts. Improved surveillance, education, involvement, attention moral injury building existing strengths may enhance care. Doing so offers wider benefits beyond LC. call paradigm shift approaches IACCs.

Язык: Английский

Long COVID science, research and policy DOI Creative Commons
Ziyad Al‐Aly, Hannah Davis, Lisa McCorkell

и другие.

Nature Medicine, Год журнала: 2024, Номер 30(8), С. 2148 - 2164

Опубликована: Авг. 1, 2024

Long COVID represents the constellation of post-acute and long-term health effects caused by SARS-CoV-2 infection; it is a complex, multisystem disorder that can affect nearly every organ system be severely disabling. The cumulative global incidence long around 400 million individuals, which estimated to have an annual economic impact approximately $1 trillion-equivalent about 1% economy. Several mechanistic pathways are implicated in COVID, including viral persistence, immune dysregulation, mitochondrial dysfunction, complement endothelial inflammation microbiome dysbiosis. devastating impacts on individual lives and, due its complexity prevalence, also has major ramifications for systems economies, even threatening progress toward achieving Sustainable Development Goals. Addressing challenge requires ambitious coordinated-but so far absent-global research policy response strategy. In this interdisciplinary review, we provide synthesis state scientific evidence assess human health, systems, economy metrics, forward-looking roadmap.

Язык: Английский

Процитировано

106
Long COVID: a clinical update DOI
Trisha Greenhalgh, Manoj Sivan,

Alice Perlowski

и другие.

The Lancet, Год журнала: 2024, Номер 404(10453), С. 707 - 724

Опубликована: Июль 31, 2024

Язык: Английский

Процитировано

78
Effectiveness of a personalised self-management intervention for people living with long covid (Listen trial): pragmatic, multicentre, parallel group, randomised controlled trial DOI Creative Commons
Monica Busse, Philip Pallmann, Muhammad Riaz

и другие.

BMJ Medicine, Год журнала: 2025, Номер 4(1), С. e001068 - e001068

Опубликована: Янв. 1, 2025

To evaluate the effectiveness of Listen, a self-management support intervention, for people living with long covid who were not in hospital. Pragmatic, multicentre, parallel group, randomised controlled trial. Twenty four sites England and Wales. Identified from clinic waiting lists, word mouth, adverts/social media self-referred to trial, 554 adults receive either Listen trial intervention or NHS usual care. The involved up six one-to-one personalised sessions trained healthcare practitioners an accompanying handbook co-designed by lived experience health professionals. Usual care was variable, ranging no access, access mobile applications resources, specialist clinics. primary outcome Oxford participation activities questionnaire (Ox-PAQ) routine scale score at three months assessed intention-to-treat population. Secondary outcomes included Ox-PAQ emotional wellbeing social engagement scores, Short Form-12 (SF-12) survey, fatigue impact scale, generalised self-efficacy months. EuroQol five-dimension five-level (EQ-5D-5L) utility. Serious adverse events recorded. Between 27 May 2022 15 September 2023, (mean age 50 (standard deviation 12.3) years; 394 (72.4%) women) randomly assigned. At months, participants assigned group reported small non-significant improvements capacity daily as (adjusted mean difference -2.68 (95% confidence interval (CI) -5.38 0.02), P=0.052) compared For secondary outcomes, receiving also significant mental (Ox-PAQ -5.29 CI -8.37 -2.20), P=0.001; SF-12 2.36 0.77 3.96), P=0.004), reductions (fatigue -7.93 -11.97 -3.88), P<0.001), increases (generalised 2.63 1.50 3.75), P<0.001). No differences found (-2.07 -5.36 1.22), P=0.218) physical (0.32 -0.93 1.57), P=0.612). related serious reported. resulted short term when Improvements wellbeing, fatigue, quality life, Physical affected intervention. limited understanding how much change is clinically meaningful this population along unblinded design, use self-referral recruitment method variable may have introduced unintended bias thus limits robust conclusions about Further research required fully establish ISRCTN36407216, ISRCTN registry, registered January 2022.

Язык: Английский

Процитировано

2
Using co‐design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention DOI
Fiona Jones,

Anne Domeny,

Jessica N. Fish

и другие.

Health Expectations, Год журнала: 2024, Номер 27(3)

Опубликована: Май 24, 2024

Abstract Introduction Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms no ‘one size’ of treatment is likely to be effective for everyone. Supported self‐management the varied Long Covid (LC) recommended by National Institute Health Care Excellence in United Kingdom. We aimed develop a new personalised support intervention people LC using structured co‐design framework guide replication evaluation. Methods used improvement methodology, Experience‐Based Co‐Design, an accelerated form harness collective experiences LC. Incorporating evidence from ‘Bridges Self‐Management’ (Bridges) approach which healthcare professionals (HCPs)are trained knowledge, confidence skills individuals long term conditions. Co‐designed resources also central Bridges. Adults who self‐identified as or recovered LC, England Wales, aged 18 years over were recruited, HCPs, experience supporting Participants took part series small group meetings larger mixed agree priorities, core principles generate content. Results People ( n = 28), HCPs 9) supported book (hard‐copy digital form) 1:1 sessions HCP. Co‐design stages prioritised stories about physical first, psychological social challenges followed, nonlinear journeys reconceptualising stability progress, rich descriptions strategies links reputable advice navigating services. enabled formulation eight underpinned training language fidelity assessments. Conclusion have developed intervention, one‐to‐one delivered co‐designed prompt build plans narratives, ideas, solutions other Effectiveness cost effectiveness ‘LISTEN’ will evaluated randomised controlled trial set within context updated Framework Developing Evaluating Complex Interventions. Patient Public Contribution The LISTEN Involvement (PPI) comprised seven They all contributed design this study five members community described paper. paper interpreting analysis results. Three our PPI co‐authors

Язык: Английский

Процитировано

5
We must recognise the collective wisdom of those with lived experience of long covid DOI Open Access
Fiona Jones, Monica Busse,

C Rowe

и другие.

BMJ, Год журнала: 2025, Номер unknown, С. r243 - r243

Опубликована: Фев. 4, 2025

Язык: Английский

Процитировано

0
Improving quality in adult long covid services: Findings from the LOCOMOTION quality improvement collaborative DOI Creative Commons
Julie Darbyshire, Trisha Greenhalgh, Nawar Diar Bakerly

и другие.

Clinical Medicine, Год журнала: 2024, Номер 24(5), С. 100237 - 100237

Опубликована: Авг. 23, 2024

The protracted form of COVID-19 known as 'long covid' was first described in 2020. Its symptoms, course and prognosis vary widely; some patients have a multi-system, disabling prolonged illness. In 2021, ring-fenced funding provided to establish 90 long covid clinics England; were also established Scotland Wales. NIHR-funded LOCOMOTION project implemented UK-wide quality improvement collaborative involving ten these clinics, which ran from 2021 2023. At regular online meetings held approximately 8-weekly, participants prioritized topics, discussed research evidence guidelines, presented exemplar case histories clinic audits. A patient advisory group priority-setting exercise, participated undertook service evaluation audit. goal successive cycles aimed at changing practice align with sometimes hard achieve because definitive did not yet exist this new condition; many had comorbidities; practically constrained various ways. Nevertheless, much progress made series 'best practice' guides produced, covering general assessment management; breathing difficulties; orthostatic tachycardia other autonomic symptoms; fatigue cognitive impairment; vocational rehabilitation. This paper summarises key findings the front-line clinician mind.

Язык: Английский

Процитировано

2
Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies DOI Creative Commons
Mia Harrison, Tim Rhodes, Kari Lancaster

и другие.

BMJ Open, Год журнала: 2024, Номер 14(3), С. e083340 - e083340

Опубликована: Март 1, 2024

Objectives To investigate the lived experiences of Long COVID. Design Critical interpretive synthesis qualitative research. Data sources PubMed and Web Science databases were searched on 14 September 2023. Eligibility criteria Original peer-reviewed studies describing COVID eligible for inclusion. extraction We used established methods to search, screen manually code included studies. interpretation analyse data develop synthetic constructs. Results 68 articles identified in first phase sampling, with 16 879 participants final synthesis. The analysis these was organised into three thematic constructions COVID: (1) illness, (2) patient (3) recovery. diversely characterised across study approaches, designs findings but underpinned by shared diagnostic logics, which shaped identification measurement symptoms. boundaries between different constitutions accounts illness experience often imprecise. Slippages definitions had implications relation diagnosis, help-seeking care, expectations Conclusions is a site multiple diverse interpretation. Accounts emphasise patienthood recovery as situated emergent. ongoing context-based negotiation defining feature condition. Approaches researching, diagnosing developing health interventions must be adaptive varieties experience.

Язык: Английский

Процитировано

1
A qualitative study to inform vocational rehabilitation for people living with long COVID DOI
A. PARKIN,

Clare Rayner,

Conor Wood

и другие.

Research Square (Research Square), Год журнала: 2024, Номер unknown

Опубликована: Июль 12, 2024

Abstract Background Long COVID (LC) often impacts on the ability of those affected to meet demands a work role, known as reduced ability. This can have significant consequences and financial security. Methods A qualitative study individual interviews with people living LC (PwLC), health-care professionals key informants (from occupational health, human resources, managerial positions) was completed in late 2022, part larger consortium long assessment treatment. Results Thirty-four participated study. PwLC described wanting resume working roles despite various obstacles return (RTW) staying at (SAW). The most involved making decision when work, where there greatest disparity between role symptoms, having pressured environment to, an unexpected adverse impact returning wellbeing symptom management. Returning regarded positive step recovery by participants, although this highly dependent getting supportive RTW plans place accommodations that accommodate fluctuating nature LC, tasks hours. Further training resources around were identified needed for PwLC, employers healthcare (HCPs) delivering vocational rehabilitation interventions. Conclusion practical support is required help HCPs plan are caring, sustainable keep safely without exacerbation symptoms. Using interview findings, LC-specific intervention developed aid good practice formulating plan.

Язык: Английский

Процитировано

0
Muscle weakness post-COVID: a practical guide for primary care DOI Creative Commons
Rebecca Payne, Tabitha Pring,

Molly Hey

и другие.

British Journal of General Practice, Год журнала: 2024, Номер 74(749), С. 573 - 575

Опубликована: Ноя. 28, 2024

Язык: Английский

Процитировано

0
Examining parental participation in a successful psychological intervention for young people with epilepsy and mental health difficulties: Results from a longitudinal qualitative study within a randomised controlled trial DOI Creative Commons
Jonathan A. Smith, Isabella E. Nizza, Sophie Bennett

и другие.

Epilepsy & Behavior, Год журнала: 2024, Номер 163, С. 110169 - 110169

Опубликована: Дек. 13, 2024

Язык: Английский

Процитировано

0