"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.
Access barriers
COVID-19
Canada
Healthcare access
Lived experience
Quality
Journal
BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677
Informations de publication
Date de publication:
12 Dec 2023
12 Dec 2023
Historique:
received:
05
01
2023
accepted:
06
11
2023
medline:
13
12
2023
pubmed:
13
12
2023
entrez:
13
12
2023
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
CONCLUSIONS
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.
Identifiants
pubmed: 38087299
doi: 10.1186/s12913-023-10288-y
pii: 10.1186/s12913-023-10288-y
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1396Subventions
Organisme : CIHR
ID : 466857
Pays : Canada
Organisme : CIHR
ID : 466857
Pays : Canada
Informations de copyright
© 2023. The Author(s).
Références
Chen C, Haupert S, Zimmermann L, Shi X, Fritsche L, Mukherjee B. Global Prevalence of Post COVID-19 Condition or Long COVID: A Meta-Analysis and Systematic Review. J Infect Dis. 2022;jiac136:1–32.
Wulf Hanson S, Abbafati C, Aerts JG, Al-Aly Z, Ashbaugh C, Ballouz T, et al. A global systematic analysis of the occurrence, severity, and recovery pattern of long COVID in 2020 and 2021. medRxiv. 2022. p. 1–52. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9164454/pdf/nihpp-2022.05.26.22275532v1.pdf .
Callard F, Perego E. How and why patients made Long Covid. Soc Sci Med. 2021;268:113426.
pubmed: 33199035
pmcid: 7539940
doi: 10.1016/j.socscimed.2020.113426
Soriano J, Allan M, Alsokhn C, Alwan N, Askie L, Davis H, et al. A clinical case definition of post COVID-19 condition by a Delphi consensus. Lancet Infect Dis. 2022;22(4):e102–7. https://doi.org/10.1016/S1473-3099(21)00703-9 .
Munblit D, O'Hara M, Akrami A, Perego E, Olliaro P, Needham D. Long COVID: aiming for a consensus. Lancet Respir Med. 2022;10:1–3.
Huang C, Huang L, Wang Y, Li X, Ren L, Gu X, et al. 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Lancet. 2021;397(10270):220–32.
pubmed: 33428867
pmcid: 7833295
doi: 10.1016/S0140-6736(20)32656-8
Ayoubkhani D, Munro M. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 6 May 2022. In: Statistics Of N, editor. United Kingdom. 2022. 1–7.
Maxwell E, Poole R. Living with COVID-19: Second Review. 2021 March 16.
Bai F, Tomasoni D, Falcinella C, Barbanotti D, Castoldi R, Mule G, et al. Female gender is associated with long COVID syndrome: a prospective cohort study. Clin Microbiol Infect. 2022;28(4):611 e9–e16.
pubmed: 34763058
doi: 10.1016/j.cmi.2021.11.002
Zhang X, Wang F, Shen Y, Zhang X, Cen Y, Wang B, et al. Symptoms and Health Outcomes Among Survivors of COVID-19 Infection 1 Year After Discharge From Hospitals in Wuhan, China. JAMA Netw Open. 2021;4(9):e2127403.
pubmed: 34586367
pmcid: 8482055
doi: 10.1001/jamanetworkopen.2021.27403
Perlis RH, Green J, Santillana M, Lazer D, Ognyanova K, Simonson M, et al. Persistence of symptoms up to 10 months following acute COVID-19 illness. medRxiv. 2021.
Desgranges F, Tadini E, Munting A, Regina J, Filippidis P, Viala B, et al. Post-COVID-19 Syndrome in Outpatients: a Cohort Study. J Gen Intern Med. 2022;37(8):1943–52.
pubmed: 35319081
pmcid: 8939498
doi: 10.1007/s11606-021-07242-1
Naik S, Haldar SN, Soneja M, Mundadan NG, Garg P, Mittal A, et al. Post COVID-19 sequelae: A prospective observational study from Northern India. Drug Discov Ther. 2021;15(5):254–60.
pubmed: 34719599
doi: 10.5582/ddt.2021.01093
Augustin M, Schommers P, Stecher M, Dewald F, Gieselmann L, Gruell H, et al. Post-COVID syndrome in non-hospitalised patients with COVID-19: a longitudinal prospective cohort study. Lancet Reg Health Eur. 2021;6:100122.
pubmed: 34027514
pmcid: 8129613
doi: 10.1016/j.lanepe.2021.100122
Nalbandian A, Sehgal K, Gupta A, Madhavan MV, McGroder C, Stevens JS, et al. Post-acute COVID-19 syndrome. Nat Med. 2021;27(4):601–15.
pubmed: 33753937
pmcid: 8893149
doi: 10.1038/s41591-021-01283-z
Xiong Q, Xu M, Li J, Liu Y, Zhang J, Xu Y, et al. Clinical sequelae of COVID-19 survivors in Wuhan, China: a single-centre longitudinal study. Clin Microbiol Infect. 2021;27(1):89–95.
pubmed: 32979574
doi: 10.1016/j.cmi.2020.09.023
Halpin SJ, McIvor C, Whyatt G, Adams A, Harvey O, McLean L, et al. Postdischarge symptoms and rehabilitation needs in survivors of COVID-19 infection: A cross-sectional evaluation. J Med Virol. 2021;93(2):1013–22.
pubmed: 32729939
doi: 10.1002/jmv.26368
Sudre CH, Murray B, Varsavsky T, Graham MS, Penfold RS, Bowyer RC, et al. Attributes and predictors of long COVID. Nat Med. 2021;27(4):626–31.
pubmed: 33692530
pmcid: 7611399
doi: 10.1038/s41591-021-01292-y
Davis HE, Assaf GS, McCorkell L, Wei H, Low RJ, Re’em Y, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019.
pubmed: 34308300
pmcid: 8280690
doi: 10.1016/j.eclinm.2021.101019
Lopez-Leon S, Wegman-Ostrosky T, Perelman C, Sepulveda R, Rebolledo PA, Cuapio A, et al. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Sci Rep. 2021;11(1):16144.
pubmed: 34373540
pmcid: 8352980
doi: 10.1038/s41598-021-95565-8
Assaf G, Davis H, McCorkell L, Wei. H, O’Neil B, Akrami A, et al. COVID-19 Prolonged Symptoms Survey - Analysis Report Patient-Led Research Collaboartive2020 [Available from: https://patientresearchcovid19.com/research/report-1/ .
Long COVID Physio. About Long COVID Physio: Long COVID Physio; n.d. https://longcovid.physio/about .
World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London: World Physiotherapy; 2021.
Harrington DW, Rosenberg MW, Wilson K. Comparing health status and access to health care in Canada’s largest metropolitan areas. Urban Geogr. 2014;35(8):1156–70.
doi: 10.1080/02723638.2014.945262
Wilson K, Rosenberg MW. The geographies of crisis: exploring accessibility to health care in Canada. Can Geogr. 2002;46(3):223–34.
doi: 10.1111/j.1541-0064.2002.tb00742.x
Sunnquist M, Nicholson L, Jason LA, Friedman KJ. Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence. Mod Clin Med Res. 2017;1(1):28–35.
pubmed: 28713878
pmcid: 5510655
Macpherson K, Cooper K, Harbour J, Mahal D, Miller C, Nairn M. Experiences of living with long COVID and of accessing healthcare services: a qualitative systematic review. BMJ Open. 2022;12(1):e050979.
pubmed: 35017239
doi: 10.1136/bmjopen-2021-050979
Baz SA, Fang C, Carpentieri JD, Sheard L. “I don’t know what to do or where to go”. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK. Health Expect. 2023;26(1):542–54.
pubmed: 36512382
doi: 10.1111/hex.13687
Alberta Health Services. Alberta Health Services’ Pulmonary Care Clinic - Post COVID Clinic n.d. [Available from: www.albertahealthservices.ca/findhealth/Service.aspx?id=1027662&serviceAtFacilityID=1117923 .
Toy A. 3 Alberta clinics study long-term effects of COVID-19, lasting symptoms. Global News. 2021;Sect. Science.
de Castillo C. New clinic opens in Calgary to treat people with long-term effects from COVID-19. Global News. 2021;Sect. Health.
Carriere J, Shafi H, Brehon K, Pohar Manhas K, Churchill K, Ho C, et al. Case Report: Utilizing AI and NLP to Assist with Healthcare and Rehabilitation During the COVID-19 Pandemic. Front Artif Intell. 2021;4:613637.
pubmed: 33733232
pmcid: 7907599
doi: 10.3389/frai.2021.613637
BreatheWell Physiotherapy. Post-COVID Support n.d. [Available from: https://www.breathewellphysio.com/post-covid-recovery-support.html# /.
WCB-Alberta. COVID-19 2022 [Available from: https://www.wcb.ab.ca/assets/pdfs/workers/WFS_COVID-19.pdf .
Lifemark. Post COVID-19 Rehabilitation and Recovery Program n.d. [Available from: www.lifemark.ca/services/post-covid-19-rehab-recovery .
Levesque JF, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12:18.
pubmed: 23496984
pmcid: 3610159
doi: 10.1186/1475-9276-12-18
Cu A, Meister S, Lefebvre B, Ridde V. Assessing healthcare access using the Levesque’s conceptual framework- a scoping review. Int J Equity Health. 2021;20(1):116.
pubmed: 33962627
pmcid: 8103766
doi: 10.1186/s12939-021-01416-3
Russell G, Kunin M, Harris M, Levesque JF, Descoteaux S, Scott C, et al. Improving access to primary healthcare for vulnerable populations in Australia and Canada: protocol for a mixed-method evaluation of six complex interventions. BMJ Open. 2019;9(7):e027869.
pubmed: 31352414
pmcid: 6661687
doi: 10.1136/bmjopen-2018-027869
Nelson V, Lambert M, Richard L, Derrett S, Wyeth E. Examining the barriers and facilitators for Maori accessing injury and rehabilitation services: a scoping review protocol. BMJ Open. 2022;12(2):e048252.
pubmed: 35105564
pmcid: 8808416
doi: 10.1136/bmjopen-2020-048252
Ho JW, Kuluski K, Im J. “It’s a fight to get anything you need” - Accessing care in the community from the perspectives of people with multimorbidity. Health Expect. 2017;20(6):1311–9.
pubmed: 28544493
pmcid: 5689221
doi: 10.1111/hex.12571
Embleton L, Shah P, Gayapersad A, Kiptui R, Ayuku D, Wachira J, et al. Recommendations for improving access to healthcare for street-connected children and youth in Kenya: A qualitative study. Child Youth Serv Rev. 2021;131:106302.
doi: 10.1016/j.childyouth.2021.106302
Thorne SE. Interpretive description qualitative research for applied practice: Developing qualitative inquiry. 2nd ed. New York, NY: Routledge; 2016. p. 336.
doi: 10.4324/9781315426259
Hunt MR. Strengths and Challenges in the Use of Interpretive Description: Reflections Arising From a Study of the Moral Experience of Health Professionals in Humanitarian Work. Qual Health Res. 2009;19(9):1284–92.
pubmed: 19690208
doi: 10.1177/1049732309344612
abScent. NoseWell: Recovering from long-term Covid-19 smell and taste loss: abScent; 2021 [Available from: https://abscent.org/nosewell .
Teodoro IPP, Rebouças VdCF, Thorne SE, Souza NKMd, Brito LSAd, Alencar AMPG. Interpretive description: a viable methodological approach for nursing research. Escola Anna Nery. 2018;22(3):1–8.
Thorne S, Oliffe J, Kim-Sing C, Hislop TG, Stajduhar K, Harris SR, et al. Helpful communications during the diagnostic period: an interpretive description of patient preferences. Eur J Cancer Care (Engl). 2010;19(6):746–54.
pubmed: 19832891
doi: 10.1111/j.1365-2354.2009.01125.x
Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2020;18(3):328–52.
doi: 10.1080/14780887.2020.1769238
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
doi: 10.1191/1478088706qp063oa
QSR International Pty Ltd. NVivo (released in March 2020)2020.
Braun V, Clarke V. Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a knowing researcher. Int J Transgend Health. 2023;24(1):1–6.
pubmed: 36713144
doi: 10.1080/26895269.2022.2129597
Denzin NKLYS. The SAGE Handbook of Qualitative Research. 5th ed. Thousand Oaks, California: SAGE Publications; 2017. p. 992.
Long COVID Physio. Post-Exertional Symptom Exacerbation (PESE): Long COVID Physio; 2022 [Available from: https://longcovid.physio/post-exertional-malaise .
Twomey R, DeMars J, Franklin K, Culos-Reed SN, Weatherald J, Wrightson JG. Chronic Fatigue and Postexertional Malaise in People Living With Long COVID: An Observational Study. Phys Ther Rehabil J. 2022;102(4):1–12.
Centers for Disease Control and Prevention. Long COVID or Post-COVID Conditions: Centers for Disease Control and Prevention; 2022 [Available from: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html .
Brown D, O’Brien K. Conceptualising Long COVID as an episodic health condition. BMJ Glob Health. 2021;6(9):e007004.
pubmed: 34551971
doi: 10.1136/bmjgh-2021-007004
O’Brien K, Brown D, Bergin C, Erlandson K, Vera J, Avery L, et al. Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID – protocol for a mixed-methods study. BMJ Open. 2022;12(3):1–10.
doi: 10.1136/bmjopen-2022-060826
Aiyegbusi OL, Hughes SE, Turner G, Rivera SC, McMullan C, Chandan JS, et al. Symptoms, complications and management of long COVID: a review. J R Soc Med. 2021;114(9):428–42.
pubmed: 34265229
pmcid: 8450986
doi: 10.1177/01410768211032850
Ladds E, Rushforth A, Wieringa S, Taylor S, Rayner C, Husain L, et al. Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services. BMC Health Serv Res. 2020;20(1):1144.
pubmed: 33342437
pmcid: 7750006
doi: 10.1186/s12913-020-06001-y
Gorna R, MacDermott N, Rayner C, O’Hara M, Evans S, Agyen L, et al. Long COVID guidelines need to reflect lived experience. The Lancet. 2021;397(10273):455–7.
doi: 10.1016/S0140-6736(20)32705-7
Covid-19 Open Access Project. Living Evidence on COVID-19 2020 [Available from: https://ispmbern.github.io/covid-19/living-review/ .
Humphreys H, Kilby L, Kudiersky N, Copeland R. Long COVID and the role of physical activity: a qualitative study. BMJ Open. 2021;11(3):e047632.
pubmed: 33692189
doi: 10.1136/bmjopen-2020-047632
Burton A, Aughterson H, Fancourt D, Philip KEJ. Factors shaping the mental health and well-being of people experiencing persistent COVID-19 symptoms or “long COVID”: qualitative study. BJPsych Open. 2022;8(2):e72.
pubmed: 35307048
doi: 10.1192/bjo.2022.38
Van de Vyver J, Leite AC, Alwan NA. Navigating the social identity of long covid. BMJ. 2021;375:n2933.
pubmed: 34836878
doi: 10.1136/bmj.n2933
Kingstone T, Taylor AK, O’Donnell CA, Atherton H, Blane DN, Chew-Graham CA. Finding the “right” GP: a qualitative study of the experiences of people with long-COVID. BJGP Open. 2020;4(5):bjgpopen20X101143.
pubmed: 33051223
pmcid: 7880173
doi: 10.3399/bjgpopen20X101143
Burton CW, Downs CA, Hughes T, Lambert N, Abrahim HL, Herrera MG, et al. A novel conceptual model of trauma-informed care for patients with post-acute sequelae of SARS-CoV-2 illness (PASC). J Adv Nurs. 2022;78(11):3618–28.
pubmed: 36036199
doi: 10.1111/jan.15426
Taylor AK, Kingstone T, Briggs TA, O’Donnell CA, Atherton H, Blane DN, et al. “Reluctant pioneer”: A qualitative study of doctors’ experiences as patients with long COVID. Health Expect. 2021;24(3):833–42.
pubmed: 33749957
pmcid: 8235894
doi: 10.1111/hex.13223
Ireson J, Taylor A, Richardson E, Greenfield B, Jones G. Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community. Health Expect. 2022;25(4):1753–65.
Mendelson M, Nel J, Blumberg L, Madhi SA, Dryden M, Stevens W, et al. Long-COVID: An evolving problem with an extensive impact. SAMJ. 2021;111(1):10–2.
doi: 10.7196/SAMJ.2020.v111i11.15433
Wright J, Astill S, Sivan M. The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study. Int J Environ Res Public Health. 2022;19(9):5093.
pubmed: 35564488
pmcid: 9105041
doi: 10.3390/ijerph19095093
National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. National Institute for Health and Care Excellence; 2021.
Day H. Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study. J Med Int Res. 2022;24:37674 (forthcoming/in-press).
Wojkowski S, Smith J, Richardson J, Birch S, Boyle M. A scoping review of need and unmet need for community-based physiotherapy in Canada. J Crit Rev. 2016;3(4):1–7.
Rostami M, Vakilian F, Brar G, Wang G. Long COVID Inter-professional Outpatient Program (IPOP) Evaluation Report (June 2020-August 2022). 2023.
WCB-Alberta. Our long-COVID treatment program supports workers for the long haul n.d. [Available from: https://www.wcb.ab.ca/annual-report-2021/Long-COVID-treatment-program.html .