Lived experience of patients with Long COVID: a qualitative study in the UK
Journal article
Callum Thomas, Mark A Faghy, Rebecca Owen, James Yates, Francesco Ferraro, Tom Bewick, Kate Haggan, Ruth E M Ashton and Ashton, R. 2023. Lived experience of patients with Long COVID: a qualitative study in the UK. BMJ Open. pp. 1-9. https://doi.org/10.1136/bmjopen-2022-068481
| Authors | Callum Thomas, Mark A Faghy, Rebecca Owen, James Yates, Francesco Ferraro, Tom Bewick, Kate Haggan, Ruth E M Ashton and Ashton, R. |
|---|---|
| Abstract | Background Long COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived experience of patients. Currently, there is a paucity of research documenting the day-to-day experiences of patients living with Long COVID. Objective To explore the lived experience of Long COVID patients. Study design Longitudinal, observation study. Setting An inductive, data-driven, qualitative approach was used to evaluate hand-written diaries obtained from individuals who had been referred to a Derbyshire Long COVID clinic. Participants 12 participants (11 females, age 49±10 years, 11 Caucasians) were recruited. Participants were included if they had a previous confirmed or suspected COVID-19 infection with ongoing recovery, >18 years old, understood the study requirements and provided informed consent. Method Participants were directed to complete self-report diaries over 16 weeks. Responses were transcribed verbatim and analysed using thematic analysis. Results Three key themes were highlighted: (1) understanding who helps patients manage symptoms, (2) daily activities and the impact on quality of life and health status and (3) the effect of turbulent and episodic symptom profiles on personal identity and recovery. Conclusions The novel challenges presented by Long COVID are complex with varying inter-related factors that are broadly impacting functional status and quality of life. Support mechanisms must incorporate the lived experiences and foster true collaborations between health professionals, patients and researchers to improve patient outcomes. |
| Keywords | Long COVID; lived experience ; global health crisis |
| Year | 2023 |
| Journal | BMJ Open |
| Journal citation | pp. 1-9 |
| Publisher | BMJ Open |
| ISSN | 2044-6055 |
| Digital Object Identifier (DOI) | https://doi.org/10.1136/bmjopen-2022-068481 |
| Web address (URL) | https://doi.org/10.1136/bmjopen-2022-068481 |
| Output status | Published |
| Publication dates | 26 Apr 2023 |
| Publication process dates | |
| Deposited | 24 May 2023 |
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Pick, H.J., Faghy, M., Cresswell, G., Ashton, D., Bolton, C.E., McKeever, T., Lim, W.S. and Bewick, T. 2021. The feasibility and tolerability of using inspiratory muscle training with adults discharged from the hospital with community-acquired pneumonia. Advances in Respiratory Medicine. 89 (2), pp. 216-220. https://doi.org/10.5603/arm.a2021.0002Targeting Sedentary Behavior in Minority Populations as a Feasible Health Strategy During and Beyond COVID-19: On Behalf of ACSM-EIM and HL-PIVOT
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Alansare, Abdullah Bandar, Bates, Lauren C, Stoner, Lee, Kline, Christopher E, Nagle, Elizabeth, Jennings, J Richard, Hanson, Erik D, Faghy, Mark A and Gibbs, Bethany Barone 2021. Associations of Sedentary Time with Heart Rate and Heart Rate Variability in Adults: A Systematic Review and Meta-Analysis of Observational Studies. Switzerland MDPI. https://doi.org/10.3390/ijerph18168508Multi-Component Physical Activity Interventions in the UK Must Consider Determinants of Activity to Increase Effectiveness
Faghy, Mark, Armstrong-Booth, Kirsty E, Staples, Vicki, Duncan, Micheal J and Roscoe, Clare M P 2021. Multi-Component Physical Activity Interventions in the UK Must Consider Determinants of Activity to Increase Effectiveness. Journal of Functional Morphology and Kinesiology. 6 (3), p. 56. https://doi.org/10.3390/jfmk6030056A Call to Clarify the Intensity and Classification of Standing Behavior
Kowalsky, Robert J, Stoner, Lee, Faghy, Mark A and Barone Gibbs, Bethany 2021. A Call to Clarify the Intensity and Classification of Standing Behavior. International Journal of Environmental Research and Public Health. 18 (16). https://doi.org/10.3390/ijerph18168460The Physiological Impact of Masking Is Insignificant and Should Not Preclude Routine Use During Daily Activities, Exercise, and Rehabilitation
Haraf, R.H., Faghy, M., Carlin, B. and Josephson, R.A. 2021. The Physiological Impact of Masking Is Insignificant and Should Not Preclude Routine Use During Daily Activities, Exercise, and Rehabilitation. Journal of Cardiopulmonary Rehabilitation and Prevention. 41 (1), pp. 1-5. https://doi.org/10.1097/hcr.0000000000000577What Comes First, the Behavior or the Condition? In the COVID-19 Era, It May Go Both Ways
Arena, Ross, Lavie, Carl J and Faghy, Mark A 2021. What Comes First, the Behavior or the Condition? In the COVID-19 Era, It May Go Both Ways. Current Problems in Cardiology. 47 (2). https://doi.org/10.1016/j.cpcardiol.2021.100963Shelter from the cytokine storm: Healthy living is a vital preventative strategy in the COVID-19 era
Arena, Ross, Bond, Samantha, Calvo, Isabel Romero, Lebowicz, Leah, Ozemek, Cemal, Severin, Richard, Laddu, Deepika, Faghy, Mark, Lavie, Carl J. and Carbone, Salvatore 2021. Shelter from the cytokine storm: Healthy living is a vital preventative strategy in the COVID-19 era. Progress in Cardiovascular Diseases. 73 (56), p. 60. https://doi.org/10.1016/j.pcad.2021.06.008Influence of the COVID-19 Lockdown on the Physical and Psychosocial Well-being and Work Productivity of Remote Workers: Cross-sectional Correlational Study (Preprint)
Yessica Abigail Tronco Hernández, Fabio Parente, Mark A Faghy, Clare M P Roscoe, Frances A Maratos and Faghy, M. 2021. Influence of the COVID-19 Lockdown on the Physical and Psychosocial Well-being and Work Productivity of Remote Workers: Cross-sectional Correlational Study (Preprint). JMIR. https://doi.org/10.2196/preprints.30708The need for exercise sciences and an integrated response to COVID-19: A position statement from the international HL-PIVOT network
Arena, Ross, Stoner, Lee, Haraf, Rebecca H., Josephson, Richard, Hills, Andrew P., Dixit, Snehil, Popovic, Dejana, Smith, Andy, Myers, Jonathan, Bacon, Simon L., Niebauer, Josef, Dourado, Victor Z., Babu, Abraham S., Maden-Wilkinson, Thomas M., Copeland, Robert J., Gough, Lewis A., Bond, Sam, Stuart, Kaz, Bewick, Thomas, Ashton, Ruth E.M. and Faghy, Mark 2021. The need for exercise sciences and an integrated response to COVID-19: A position statement from the international HL-PIVOT network. Progress in Cardiovascular Diseases. 67, pp. 2-10. https://doi.org/10.1016/j.pcad.2021.01.004The Effects of a Nutrition Education Intervention on Sports Nutrition Knowledge during a Competitive Season in Highly Trained Adolescent Swimmers.
Foo, Wee Lun, Faghy, Mark A, Sparks, Andy, Newbury, Josh W and Gough, Lewis A 2021. The Effects of a Nutrition Education Intervention on Sports Nutrition Knowledge during a Competitive Season in Highly Trained Adolescent Swimmers. Nutrients. 13 (8). https://doi.org/10.3390/nu13082713Cardiorespiratory and skeletal muscle damage due to COVID-19: making the urgent case for rehabilitation
Silva, Rebeca Nunes, Goulart, Cássia da Luz, Oliveira, Murilo Rezende, Tacao, Guilherme Yassuyuki, Back, Guilherme Dionir, Severin, Richard, Faghy, Mark, Arena, Ross and Borghi-Silva, Audrey 2021. Cardiorespiratory and skeletal muscle damage due to COVID-19: making the urgent case for rehabilitation. Expert Review of Respiratory Medicine. 15 (9), pp. 1107-1120. https://doi.org/10.1080/17476348.2021.1893169Educators Perspectives on the Value of Physical Education, Physical Activity and Fundamental Movement Skills for Early Years Foundation Stage Children in England.
Dobell, Alexandra, Pringle, Andy, Faghy, Mark and Roscoe, Clare M P 2021. Educators Perspectives on the Value of Physical Education, Physical Activity and Fundamental Movement Skills for Early Years Foundation Stage Children in England. Children. 8 (5), p. 338. https://doi.org/10.3390/children8050338Cardiopulmonary exercise testing as a vital sign in patients recovering from COVID-19.
Arena, Ross and Faghy, Mark A 2021. Cardiopulmonary exercise testing as a vital sign in patients recovering from COVID-19. Expert review of cardiovascular therapy. 19 (10), pp. 877-880. https://doi.org/10.1080/14779072.2021.1985466Current and Future Implications of COVID-19 among Youth Wheelchair Users: 24-Hour Activity Behavior.
Conners, Ryan T, Bates, Lauren C, Lassalle, Patricia Pagan, Zieff, Gabriel, Whitehead, Paul N, Stevens, Sandra, Killen, Lauren, Cochrum, Robert, Rodebaugh, Kathryn L, Stoner, Lee and Faghy, Mark A 2021. Current and Future Implications of COVID-19 among Youth Wheelchair Users: 24-Hour Activity Behavior. Children. 8 (8). https://doi.org/10.3390/children8080690COVID-19 infection and cardiometabolic complications: short- and long-term treatment and management considerations
Stoner, Lee, Faghy, Mark and Conners, Ryan 2021. COVID-19 infection and cardiometabolic complications: short- and long-term treatment and management considerations. Reviews in cardiovascular medicine. 22 (2), pp. 263-265. https://doi.org/10.31083/j.rcm2202031Supported progressive resistance exercise training to counter the adverse side effects of robot-assisted radical prostatectomy: a randomised controlled trial
Ashton, Ruth E, Aning, Jonathan J, Tew, Garry A, Robson, Wendy A and Saxton, John M 2021. Supported progressive resistance exercise training to counter the adverse side effects of robot-assisted radical prostatectomy: a randomised controlled trial. Supportive care in cancer. 29, p. 4595–4605. https://doi.org/10.1007/s00520-021-06002-5Physical activity and sedentary behavior in people with spinal cord injury: Mitigation strategies during COVID-19 on behalf of ACSM-EIM and HL-PIVOT
Bates, Lauren, Conners, Ryan, Zieff, Gabriel, Adams, Nathan, T., Edgar, Kyle, M., Stevens, Sandra, Faghy, Mark, Arena, Ross, Vermeesch, Amber, Rodney, Joseph, P., Keith, Nicole and Stoner, Lee 2021. Physical activity and sedentary behavior in people with spinal cord injury: Mitigation strategies during COVID-19 on behalf of ACSM-EIM and HL-PIVOT. Disability and Health Journal. 15 (1). https://doi.org/10.1016/j.dhjo.2021.101177Current activities centered on healthy living and recommendations for the future: a position statement from the HL-PIVOT network
Arena, Ross, Kaminsky, Leonard A., Williams, Mark, Sabbahi, Ahmad, Popovic, Dejana, Axtell, Robert, Faghy, Mark, Hills, Andrew P., Olivares Olivares, Silvia Lizett, Lopez, Mildred, Pronk, Nicolaas P., Laddu, Deepika, Samuel Babu, Abraham, Josephson, Richard, Whitsel, Laurie P., Severin, Rich, Christle, Jeffrey W., Zuniga Dourado, Victor, Niebauer, Joseph, Savage, Patrick, Austford, Leslie D. and Lavie, Carl J 2021. Current activities centered on healthy living and recommendations for the future: a position statement from the HL-PIVOT network. Current Problems in Cardiology. 46 (6). https://doi.org/10.1016/j.cpcardiol.2021.100823Distance Learning in the COVID-19 Era: Perceptions in Southern Italy
Ferraro, F., Ivano Ambra, F., Aruta, Luigi and Iavarone, Maria Luisa 2020. Distance Learning in the COVID-19 Era: Perceptions in Southern Italy. Education Sciences. 10 (12), pp. 1-10. https://doi.org/10.3390/educsci10120355Evaluation of Health-Habits with the S.M.A.R.T. Questionnaire: An Observational Study
Ferraro, F., Ivano Ambra, F. and Luisa Iavarone, M. 2020. Evaluation of Health-Habits with the S.M.A.R.T. Questionnaire: An Observational Study. Education Sciences. 10 (10), pp. 1-10. https://doi.org/10.3390/educsci10100285Protocol used in the comparison of balance changes after inspiratory muscle or Otago exercise training.
Ferraro, F. 2020. Protocol used in the comparison of balance changes after inspiratory muscle or Otago exercise training. protocols.io. https://doi.org/10.17504/protocols.io.8vhhw36Comparison of balance changes after inspiratory muscle or Otago exercise training
Ferraro, F., Gavin, J. P., Wainwright, T. W. and McConnell, A. K. 2020. Comparison of balance changes after inspiratory muscle or Otago exercise training. PLos ONE. 15 (1), pp. 1-16. https://doi.org/10.1371/journal.pone.0227379A flow resistive inspiratory muscle training mask worn during high-intensity interval training does not improve 5 km running time-trial performance
Brown, Peter I., Faghy, Mark, Davis, Nichola, Mayes, JP and Maden-Wilkinson, Tom 2020. A flow resistive inspiratory muscle training mask worn during high-intensity interval training does not improve 5 km running time-trial performance. European Journal of Applied Physiology. 121, p. 183–191. https://doi.org/10.1007/s00421-020-04505-3Using system mapping to help plan and implement city-wide action to promote physical activity
Cavill, Nick, Richardson, Debra, Faghy, Mark, Bussell, Chris and Rutter, Harry 2020. Using system mapping to help plan and implement city-wide action to promote physical activity. Journal of Public Health Research. 9 (3). https://doi.org/10.4081/jphr.2020.1759Cardiopulmonary exercise testing in the COVID-19 endemic phase
Faghy, Mark, Hull, James, Cooper, Brendan and Sylvester, Karl 2020. Cardiopulmonary exercise testing in the COVID-19 endemic phase. British Journal of Anaesthesia. 125 (4), pp. 447-449. https://doi.org/10.1016/j.bja.2020.06.006Cross validation of actigraph derived accelerometer cut‐points for assessment of sedentary behaviour and physical activity in children aged 8‐11 years
Duncan, Michael J., Eyre, Emma L.J., Cox, Val, Roscoe, C., Faghy, Mark, Tallis, Jason and Dobell, Alexandra 2020. Cross validation of actigraph derived accelerometer cut‐points for assessment of sedentary behaviour and physical activity in children aged 8‐11 years. Acta Paediatrica. 109 (9), pp. 1825-1830. https://doi.org/10.1111/apa.15189Fundamental movement skills and accelerometer-measured physical activity levels during early childhood: a systematic review
Dobell, Alexandra, Pringle, Andy, Faghy, Mark and Roscoe, Clare M. P. 2020. Fundamental movement skills and accelerometer-measured physical activity levels during early childhood: a systematic review. MDPI AG. https://doi.org/10.3390/children7110224A biopsychosocial framework for recovery from COVID-19
Stuart, K., Faghy, M.A., Bidmead, E., Browning, R., Roberts, C., Grimwood, S. and Winn-Reed, T. 2020. A biopsychosocial framework for recovery from COVID-19. International Journal of Sociology and Social Policy. 40 (9/10), pp. 1021-1039. https://doi.org/10.1108/ijssp-07-2020-0301Integrated sports and respiratory medicine in the aftermath of COVID-19
Faghy, M., Ashton, R., Maden-Wilkinson, T., Copeland, R. J., Bewick, T. and Smith, A. 2020. Integrated sports and respiratory medicine in the aftermath of COVID-19. The Lancet Respiratory Medicine. 8 (9), p. p852. https://doi.org/10.1016/s2213-2600(20)30307-6Calibration and cross-validation of accelerometery for estimating movement skills in children aged 8–12 years
Duncan, M., Dobell, A., Noon, M., Clark, C.T., Roscoe, C., Stodden, D., Sacko, R., Eyre, E. and Faghy, M. 2020. Calibration and cross-validation of accelerometery for estimating movement skills in children aged 8–12 years. Sensors. 20 (10), p. 2776. https://doi.org/10.3390/s20102776Sodium bicarbonate ingestion improves time-to-exhaustion cycling performance and alters estimated energy system contribution: a dose-response investigation
Gurton, William H., Gough, Lewis A., Sparks, S. Andy, Faghy, Mark and Reed, Katharine E. 2020. Sodium bicarbonate ingestion improves time-to-exhaustion cycling performance and alters estimated energy system contribution: a dose-response investigation. Frontiers in Nutrition. 7. https://doi.org/10.3389/fnut.2020.00154Inspiratory muscle training (IMT) for adults discharged from hospital with community acquired pneumonia (CAP) – a feasibility study
Pick, HJ, Faghy, Mark, Cresswell, G, Lim, WS and Bewick, T 2018. Inspiratory muscle training (IMT) for adults discharged from hospital with community acquired pneumonia (CAP) – a feasibility study. Thorax.The effects of 8 weeks of inspiratory muscle training on the balance of healthy older adults: a randomized, double‐blind, placebo‐controlled study
Ferraro, F., James P. Gavin, Tom Wainwright and Alison McConnell 2019. The effects of 8 weeks of inspiratory muscle training on the balance of healthy older adults: a randomized, double‐blind, placebo‐controlled study. Physiological Reports. 7 (9), pp. 1-12. https://doi.org/10.14814/phy2.14076A review of inspiratory muscle training. When and why does it work?
Faghy, M. 2019. A review of inspiratory muscle training. When and why does it work? Japanese Journal of Physical Fitness and Sports Medicine. 68 (1), pp. 3-5. https://doi.org/10.7600/jspfsm.68.3Functional training of the inspiratory muscles improves load carriage performance
Faghy, Mark and Brown, Peter I 2019. Functional training of the inspiratory muscles improves load carriage performance. Ergonomics. 62 (11), pp. 1439-1449. https://doi.org/10.1080/00140139.2019.1652352Cross-sectional study of patient-reported fatigue, physical activity and cardiovascular status in men after robotic-assisted radical prostatectomy.
Ashton, Ruth E, Tew, Garry A, Robson, Wendy A, Saxton, John M and Aning, Jonathan J 2019. Cross-sectional study of patient-reported fatigue, physical activity and cardiovascular status in men after robotic-assisted radical prostatectomy. Supportive care in cancer. 27 (12), pp. 4763-4770. https://doi.org/10.1007/s00520-019-04794-1Estimating physical activity in children aged 8–11 Years using Accelerometry: Contributions from fundamental movement skills and different Accelerometer placements
Duncan, Mike, Roscoe, Clare M. P., Faghy, Mark, Tallis, Jason and Eyre, Emma 2019. Estimating physical activity in children aged 8–11 Years using Accelerometry: Contributions from fundamental movement skills and different Accelerometer placements. Frontiers in Physiology. https://doi.org/10.3389/fphys.2019.00242P25 Inspiratory muscle training (IMT) for adults discharged from hospital with community acquired pneumonia (CAP) – a feasibility study
HJ Pick, MA Faghy, G Cresswell, WS Lim, T Bewick and Faghy, M. 2018. P25 Inspiratory muscle training (IMT) for adults discharged from hospital with community acquired pneumonia (CAP) – a feasibility study. BMJ Journals. https://doi.org/10.1136/thorax-2018-212555.183Active recovery strategy and lactate clearance in elite swimmers
Mark A. Faghy, Mitch Lomax and Peter I. Brown 2018. Active recovery strategy and lactate clearance in elite swimmers. The Journal of Sports Medicine and Physical Fitness. 59 (9), pp. 1487-1491. https://doi.org/10.23736/s0022-4707.18.09228-9Effects of short-term, medium-term and long-term resistance exercise training on cardiometabolic health outcomes in adults: systematic review with meta-analysis.
Ashton, Ruth E, Tew, Garry A, Aning, Jonathan J, Gilbert, Stephen E, Lewis, Liane and Saxton, John M 2018. Effects of short-term, medium-term and long-term resistance exercise training on cardiometabolic health outcomes in adults: systematic review with meta-analysis. British journal of sports medicine. 54 (6), pp. 341-348. https://doi.org/10.1136/bjsports-2017-098970From startline to frontline: the application of respiratory exercise physiology to occupational performance
Faghy, Mark, Blacker, Sam D. and Brown, Peter I. 2017. From startline to frontline: the application of respiratory exercise physiology to occupational performance. Sport and Exercise Scientist.Whole body active warm up and inspiratory muscle warm up do not improve running performance when carrying thoracic loads
Faghy, Mark and Brown, Peter I. 2017. Whole body active warm up and inspiratory muscle warm up do not improve running performance when carrying thoracic loads. Applied physiology, nutrition, and metabolism. 42 (8). https://doi.org/10.1139/apnm-2016-0711Impact of Weekly Swimming Training Distance on the Ergogenicity of Inspiratory Muscle Training in Well-Trained Youth Swimmers
Lomax M, Kapus J, Brown PI and Faghy M 2017. Impact of Weekly Swimming Training Distance on the Ergogenicity of Inspiratory Muscle Training in Well-Trained Youth Swimmers. Journal of Strength and Conditioning Research. 33 (8), pp. 2185-2193. https://doi.org/10.1519/jsc.0000000000002375Functional inspiratory muscle training (IMT) improves load carriage performance greater than traditional IMT techniques: 1652 Board #305 June 2, 9: 00 AM - 10: 30 AM.
Faghy, Mark, Lindley, Martin R. and Brown, Peter I. 2016. Functional inspiratory muscle training (IMT) improves load carriage performance greater than traditional IMT techniques: 1652 Board #305 June 2, 9: 00 AM - 10: 30 AM. Wolters Kluwer. https://doi.org/10.1249/01.mss.0000486377.59880.50Pilot study : can inspiratory muscle training relieve symptoms ff dyspnoea and improve quality of life for advanced cancer patients ?: 1872 Board #24 June 2, 3: 30 PM - 5: 00 PM.
Lindley, Martin R., Faghy, Mark, Sowter, Heidi M. and Mickleborough, Timothy D. 2016. Pilot study : can inspiratory muscle training relieve symptoms ff dyspnoea and improve quality of life for advanced cancer patients ?: 1872 Board #24 June 2, 3: 30 PM - 5: 00 PM. Wolters Kluwer. https://doi.org/10.1249/01.mss.0000486545.72377.eaEffects of load mass carried in a backpack upon respiratory muscle fatigue
Faghy, Mark, Blacker, Sam D. and Brown, Peter I. 2016. Effects of load mass carried in a backpack upon respiratory muscle fatigue. European Journal of Sport Science. 16 (8), pp. 1032-1038. https://doi.org/10.1080/17461391.2016.1202326Limitations and trainability of the respiratory system during exercise with thoracic loads
Faghy, Mark 2016. Limitations and trainability of the respiratory system during exercise with thoracic loads. PhD Thesis https://doi.org/10.48773/92y02Number of Directional Changes Alters the Physiological, Perceptual, and Neuromuscular Responses of Netball Players During Intermittent Shuttle Running
Ashton, R. and Twist, C. 2015. Number of Directional Changes Alters the Physiological, Perceptual, and Neuromuscular Responses of Netball Players During Intermittent Shuttle Running. Journal of Strength and Conditioning Research. 29 (10), pp. 2731-7. https://doi.org/10.1519/jsc.0000000000000933Training the inspiratory muscles improves running performance when carrying a 25 kg thoracic load in a backpack
Faghy, Mark and Brown, Peter I. 2015. Training the inspiratory muscles improves running performance when carrying a 25 kg thoracic load in a backpack. European Journal of Sport Science. 16 (5), pp. 585-594. https://doi.org/10.1080/17461391.2015.1071878Preloaded Time Trial to Assess Load Carriage Performance
Mark A. Faghy and Peter I. Brown 2014. Preloaded Time Trial to Assess Load Carriage Performance. Journal of Strength and Conditioning Research. 28 (12), pp. 3354-3362. https://doi.org/10.1519/jsc.0000000000000555Thoracic load carriage-induced respiratory muscle fatigue
Faghy, M. and Brown, P.I. 2014. Thoracic load carriage-induced respiratory muscle fatigue. European Journal of Applied Physiology. 114, p. 1085–1093. https://doi.org/10.1007/s00421-014-2839-4