“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study DOI Creative Commons
Kiera McDuff, Darren A. Brown, Natalie St. Clair‐Sullivan

и другие.

medRxiv (Cold Spring Harbor Laboratory), Год журнала: 2024, Номер unknown

Опубликована: Дек. 12, 2024

ABSTRACT Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing self-management strategy to mitigate symptoms. Our aim was describe experiences of pacing from the perspectives adults living with COVID. Methods We conducted community-engaged qualitative descriptive study involving one-on-one online interviews Canada, Ireland, United Kingdom, and States explore disability. asked participants about strategies they used deal health challenges Interviews were audio recorded transcribed verbatim. analyzed data using group-based content analytical techniques. Results Among 40 COVID, majority women (n=25; 63%), white (n=29;73%) heterosexual (n=30;75%). The median age 39 years (25th, 75th percentile: 32, 49). Most (n=37;93%) or prevent Participant described across five main areas: 1) as (pacing multidimensional challenges; applying many types activities; process experienced moving target; helpful strategy, but not cure for COVID); 2) learning how pace (acquiring knowledge pacing; developing skills support pacing); 3) encountering (learning pace; experiencing inequitable access stigma judgement; undergoing psychological emotional adjustment beliefs ‘fighting’ ‘pushing through’ balancing rest activity; making sacrifices; unexpected obstacles); 4) consequences 5) conceptualising describing analogies metaphors. Discussion challenging complex symptoms Healthcare providers should work collaboratively patients further refine implement this when appropriate.

Язык: Английский

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
Long COVID management: a mini review of current recommendations and underutilized modalities DOI Creative Commons

Tiffany K. Dietz,

Kirsten N. Brondstater

Frontiers in Medicine, Год журнала: 2024, Номер 11

Опубликована: Июнь 14, 2024

Long COVID is a condition that develops in subset of patients after COVID-19 infection comprising symptoms varying severity encompassing multiple organ systems. Currently, long without consensus on formal definition, identifiable biomarkers, and validated treatment. expected to be long-term chronic for associated with suffering incapacity. There an urgent need clear management guidelines the primary care provider, who essential bridging gap more specialized improve quality life functionality their living COVID. The purpose this mini review provide providers latest highlights from existing literature regarding most common current recommendations. This also underutilized interventions stellate ganglion blocks low-dose naltrexone, both well-established safety profiles demonstrated some COVID, encourages prompt referral interventional pain management.

Язык: Английский

Процитировано

3
Psychosocial Aspects of the Lived Experience of Long COVID: A Systematic Review and Thematic Synthesis of Qualitative Studies DOI Creative Commons
Judith Eberhardt, Benjamin Gibson, Robert M. Portman

и другие.

Health Expectations, Год журнала: 2024, Номер 27(5)

Опубликована: Окт. 1, 2024

ABSTRACT Background Despite increasing recognition of long COVID, the psychosocial impacts lived experience on individuals remain underexplored. This systematic review sought to fill this gap by identifying key themes that describe dimensions COVID. Objective The aim study is identify illustrating aspects individuals' Search Strategy Searches were conducted in multiple databases and grey literature sources for qualitative studies published between November 2019 June 2024. Inclusion Criteria Eligible involved adult participants self‐reporting needed provide data could be synthesised thematically. Data Extraction Synthesis extraction thematic synthesis at least two independent reviewers each stage. Quality appraisal was performed using Critical Appraisal Skills Programme tool. Results included 34 studies. Thematic yielded five themes: ‘Debilitation’, ‘Uncertainty’, ‘Sources Support’, ‘Meaning Making: Adjusting a New Normal’ ‘Experiences with Healthcare Services’. Individuals COVID reported experiencing physical, economic, social challenges. Uncertainty scepticism from others caused anxiety. Support healthcare services, friends online groups played an important role. Acceptance gratitude found meaningful adjusting new normal. Experiences services varied. Discussion Conclusions provides valuable insights into impact highlighting profound changes challenges face. should adopt holistic approach integrate support within their management strategies, improve overall patient outcomes.

Язык: Английский

Процитировано

1
Trajectories of Coping With Persistent Smell and Taste Dysfunction After a Covid‐19 Infection—A Qualitative Interview Study DOI Creative Commons
Pernilla Sandvik, Nicklas Neuman,

Maja Flodin

и другие.

Journal of Advanced Nursing, Год журнала: 2024, Номер unknown

Опубликована: Ноя. 7, 2024

To explore trajectories of understanding and managing persistent chemosensory dysfunction after COVID-19 in patients undergoing clinical treatment.

Язык: Английский

Процитировано

0
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study DOI Creative Commons
Kiera McDuff, Darren A. Brown, Natalie St. Clair‐Sullivan

и другие.

medRxiv (Cold Spring Harbor Laboratory), Год журнала: 2024, Номер unknown

Опубликована: Дек. 12, 2024

ABSTRACT Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing self-management strategy to mitigate symptoms. Our aim was describe experiences of pacing from the perspectives adults living with COVID. Methods We conducted community-engaged qualitative descriptive study involving one-on-one online interviews Canada, Ireland, United Kingdom, and States explore disability. asked participants about strategies they used deal health challenges Interviews were audio recorded transcribed verbatim. analyzed data using group-based content analytical techniques. Results Among 40 COVID, majority women (n=25; 63%), white (n=29;73%) heterosexual (n=30;75%). The median age 39 years (25th, 75th percentile: 32, 49). Most (n=37;93%) or prevent Participant described across five main areas: 1) as (pacing multidimensional challenges; applying many types activities; process experienced moving target; helpful strategy, but not cure for COVID); 2) learning how pace (acquiring knowledge pacing; developing skills support pacing); 3) encountering (learning pace; experiencing inequitable access stigma judgement; undergoing psychological emotional adjustment beliefs ‘fighting’ ‘pushing through’ balancing rest activity; making sacrifices; unexpected obstacles); 4) consequences 5) conceptualising describing analogies metaphors. Discussion challenging complex symptoms Healthcare providers should work collaboratively patients further refine implement this when appropriate.

Язык: Английский

Процитировано

0