Living less safely through the pandemic in England for people with serious mental and physical health conditions: qualitative interviews with service users and carers of Black African, Caribbean, and South-Asian descent.
Humans
COVID-19
/ epidemiology
England
/ epidemiology
Qualitative Research
Male
Black People
/ psychology
Female
Adult
Mental Disorders
/ therapy
Caregivers
/ psychology
Middle Aged
Interviews as Topic
Pandemics
Caribbean Region
/ ethnology
Health Status Disparities
Healthcare Disparities
Asian People
/ psychology
Covid-19 Pandemic
Ethnic Inequalities
Intersectional Discrimination
Mental Health
Peer Research
Racism
Journal
BMC public health
ISSN: 1471-2458
Titre abrégé: BMC Public Health
Pays: England
ID NLM: 100968562
Informations de publication
Date de publication:
05 Oct 2024
05 Oct 2024
Historique:
received:
20
12
2023
accepted:
16
09
2024
medline:
6
10
2024
pubmed:
6
10
2024
entrez:
5
10
2024
Statut:
epublish
Résumé
COVID-19 Ethnic Inequalities in Mental health and Multimorbidities (COVEIMM) is a mixed methods study to explore whether COVID-19 exacerbated ethnic health inequalities in adults with serious mental and physical health conditions. We analysed data from electronic health records for England and conducted interviews in Birmingham and Solihull, Manchester, and South London. Sites were selected because they were pilot sites for the Patient and Carer Race Equality Framework being introduced by NHS England to tackle race inequalities in mental health. Prior to the pandemic people in England with severe mental illnesses (SMIs) faced an 11-17-year reduction in life expectancy, mostly due to preventable, long-term, physical health conditions. During the pandemic there was a marked increase in deaths of those living with an SMI. This qualitative interview study aimed to understand the reasons underlying ethnic inequalities in mortality and service use during the COVID-19 pandemic for adult service users and carers of Black African, Black Caribbean, Indian, Pakistani, and Bangladeshi backgrounds living with serious multiple long-term mental and physical health conditions. We took a participatory action research approach and qualitative interviews undertaken by experts-by-experience and university researchers Participants were purposively sampled by ethnicity, diagnoses, and comorbidities across three geographically distinct sites in England. Transcriptions were coded inductively and deductively and analysed thematically. Findings indicated multiple points along primary and secondary health pathways for mental and physical health that have the potential to exacerbate the unjust gap in mortality that exists for Black and Asian people with SMIs. Issues such as timely access to care (face-to-face and remote), being treated in a culturally appropriate manner with empathy, dignity and respect, and being able to use services without experiencing undue force, racism or other forms of intersectional discrimination were important themes arising from interviews. These poor experiences create systemic and enduring healthcare harms for racialised groups with SMIs that need to be addressed. Our findings suggest a need to address these, not only in mental health providers, but across the whole health and care system and a need to ensure more equitable healthcare partnerships with service users, carers, and communities from racialised backgrounds who are often excluded.
Sections du résumé
BACKGROUND
BACKGROUND
COVID-19 Ethnic Inequalities in Mental health and Multimorbidities (COVEIMM) is a mixed methods study to explore whether COVID-19 exacerbated ethnic health inequalities in adults with serious mental and physical health conditions. We analysed data from electronic health records for England and conducted interviews in Birmingham and Solihull, Manchester, and South London. Sites were selected because they were pilot sites for the Patient and Carer Race Equality Framework being introduced by NHS England to tackle race inequalities in mental health. Prior to the pandemic people in England with severe mental illnesses (SMIs) faced an 11-17-year reduction in life expectancy, mostly due to preventable, long-term, physical health conditions. During the pandemic there was a marked increase in deaths of those living with an SMI.
AIMS
OBJECTIVE
This qualitative interview study aimed to understand the reasons underlying ethnic inequalities in mortality and service use during the COVID-19 pandemic for adult service users and carers of Black African, Black Caribbean, Indian, Pakistani, and Bangladeshi backgrounds living with serious multiple long-term mental and physical health conditions.
METHODS
METHODS
We took a participatory action research approach and qualitative interviews undertaken by experts-by-experience and university researchers Participants were purposively sampled by ethnicity, diagnoses, and comorbidities across three geographically distinct sites in England. Transcriptions were coded inductively and deductively and analysed thematically.
RESULTS
RESULTS
Findings indicated multiple points along primary and secondary health pathways for mental and physical health that have the potential to exacerbate the unjust gap in mortality that exists for Black and Asian people with SMIs. Issues such as timely access to care (face-to-face and remote), being treated in a culturally appropriate manner with empathy, dignity and respect, and being able to use services without experiencing undue force, racism or other forms of intersectional discrimination were important themes arising from interviews.
CONCLUSION
CONCLUSIONS
These poor experiences create systemic and enduring healthcare harms for racialised groups with SMIs that need to be addressed. Our findings suggest a need to address these, not only in mental health providers, but across the whole health and care system and a need to ensure more equitable healthcare partnerships with service users, carers, and communities from racialised backgrounds who are often excluded.
Identifiants
pubmed: 39369197
doi: 10.1186/s12889-024-20107-6
pii: 10.1186/s12889-024-20107-6
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2718Informations de copyright
© 2024. The Author(s).
Références
Nazroo JY, Falaschetti E, Pierce M, Primatesta P. Ethnic inequalities in access to and outcomes of healthcare: analysis of the Health Survey for England. J Epidemiol Community Health. 2009;63(12):1022–7. https://doi.org/10.1136/jech.2009.089409 .
doi: 10.1136/jech.2009.089409
pubmed: 19622520
Public Health England. Beyond the data: understanding the impact of COVID-19 on BAME groups. London: Public Health England; 2020.
Public Health England. Disparities in the risk and outcomes of COVID-19. London; 2020.
Wan YI, Apea VJ, Dhairyawan R, Puthucheary ZA, Pearse RM, Orkin CM, Prowle JR. Ethnic disparities in hospitalisation and hospital-outcomes during the second wave of COVID-19 infection in east London. Sci Rep. 2022;12(1):3721.
pubmed: 35260620
pmcid: 8904852
doi: 10.1038/s41598-022-07532-6
Williamson EJ, Walker AJ, Bhaskaran K, Bacon S, Bates C, Morton CE, et al. Factors associated with COVID-19-related death using OpenSAFELY. Nature. 2020;584(7821):430–6.
pubmed: 32640463
pmcid: 7611074
doi: 10.1038/s41586-020-2521-4
Prats-Uribe A, Paredes R, Prieto-Alhambra D. Ethnicity, comorbidity, socioeconomic status, and their associations with COVID-19 infection in England: a cohort analysis of UK Biobank data. medRxiv. 2020.05.06.20092676. https://doi.org/10.1101/2020.05.06.20092676 .
Ministry of Housing, Communities and Local Government. Ethnicity facts and figures.: GOV.UK.; Last updated 30th September 2020.
Coronavirus (COVID-19) Related Deaths by Occupation, England and Wales. Office for National Statistics. 2021. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/causesofdeath/bulletins/coronaviruscovid19relateddeathsbyoccupationenglandandwales/deathsregisteredbetween9marchand28december2020 . Cited 25 February 2023
Halvorsrud K, Nazroo J, Otis M, Brown Hajdukova EB, Bhui K. Ethnic inequalities in the incidence of diagnosis of severe mental illness in England: a systematic review and new meta-analyses for non-affective and affective psychoses. Soc Psychiatry Psychiatr Epidemiol. 2019;54(11):1311–23.
pubmed: 31482194
doi: 10.1007/s00127-019-01758-y
Das-Munshi J, Bakolis I, Bécares L, et al. Severe mental illness, race/ethnicity, multimorbidity and mortality following COVID-19 infection: nationally representative cohort study. Br J Psychiatry. 2023;223(5):518–25. https://doi.org/10.1192/bjp.2023.112 .
Fond G, Nemani K, Etchecopar-Etchart D, Loundou A, Goff DC, Lee SW, et al. Association between mental health disorders and mortality among patients with COVID-19 in 7 Countries: a systematic review and meta-analysis. JAMA Psychiat. 2021;78(11):1208–17.
doi: 10.1001/jamapsychiatry.2021.2274
Das-Munshi J, Chang CK, Bakolis I, Broadbent M, Dregan A, Hotopf M, et al. All-cause and cause-specific mortality in people with mental disorders and intellectual disabilities, before and during the COVID-19 pandemic: cohort study. Lancet Reg Health Eur. 2021;11:100228.
pubmed: 34877563
pmcid: 8639185
doi: 10.1016/j.lanepe.2021.100228
Public Health England. Health matters: reducing health Inequalities in mental illness. London: Public Health England; 2018. 24/10/2023.
Das-Munshi J, Chang CK, Dregan A, Hatch SL, Morgan C, Thornicroft G, et al. How do ethnicity and deprivation impact on life expectancy at birth in people with serious mental illness? Observational study in the UK. Psychol Med. 2021;51(15):2581–9.
pubmed: 32372741
doi: 10.1017/S0033291720001087
Firth J, Siddiqi N, Koyanagi A, Siskind D, Rosenbaum S, Galletly C, et al. The Lancet Psychiatry Commission: a blueprint for protecting physical health in people with mental illness. Lancet Psychiatry. 2019;6(8):675–712.
pubmed: 31324560
doi: 10.1016/S2215-0366(19)30132-4
Johnson S, Dalton-Locke C, Vera San Juan N, Foye U, Oram S, Papamichail A, et al. Impact on mental health care and on mental health service users of the COVID-19 pandemic: a mixed methods survey of UK mental health care staff. Soc Psychiatry Psychiatr Epidemiol. 2021;56(1):25–37.
pubmed: 32857218
doi: 10.1007/s00127-020-01927-4
Carr MJ, Steeg S, Webb RT, Kapur N, Chew-Graham CA, Abel KM, Hope H, Pierce M, Ashcroft DM. Effects of the COVID-19 pandemic on primary care-recorded mental illness and self-harm episodes in the UK: a population-based cohort study. Lancet Public Health. 2021;6(2):e124–35. https://doi.org/10.1016/S2468-2667(20)30288-7 .
doi: 10.1016/S2468-2667(20)30288-7
pubmed: 33444560
pmcid: 7843955
Warner M, Burn S, Stoye G, Aylin PP, Bottle A, Propper C. Socioeconomic deprivation and ethnicity inequalities in disruption to NHS hospital admissions during the COVID-19 pandemic: a national observational study. BMJ Qual Saf. 2022;31(8):590–8.
pubmed: 34824162
doi: 10.1136/bmjqs-2021-013942
Digital NHS. Mental Health Act Statistics, Annual Figures. England: NHS Digital; 2022.
House of Commons, House of Lords, (Joint Committee on the Draft Mental Health Bill). Government urged to strengthen draft Mental Health Bill. London: House of Commons, House of Lords, (Joint Committee on the Draft Mental Health Bill); 2023.
Impara E, Bakolis I, Bécares L, Dasch H, Dregan A, Dyer J, Hotopf M, Stewart RJ, Stuart R, Ocloo J, Das-Munshi J. COVID-19 ethnic inequalities in mental health and multimorbidities: protocol for the COVEIMM study. Soc Psychiatry Psychiatr Epidemiol. 2022;57(12):2511–21.
pubmed: 35737082
pmcid: 9219393
doi: 10.1007/s00127-022-02305-y
NHS England Patient and carer race equality framework. London: NHS England (30 October, 2023, updated: 13 May, 2024) https://www.england.nhs.uk/long-read/patient-and-carer-race-equality-framework/#purpose-of-this-document
Department of Health and Social Care. Modernising the Mental Health Act – final report from the independent review. London; Department of Health and Social Care 6 December 2018 (updated 14 February 2019).
Parliament UK. Mental Health Act Reform - Race and Ethnic Inequalities. London: UK Parliament; 2022.
Kalathil J. ‘Hard to reach’? Racialised groups and mental health service user involvement. Bristol: Bristol University Press, Policy Press; 2013.
King C, Jeynes T. Whiteness, madness, and reform of the mental health act. Lancet Psychiatry. 2021;8(6):460–1.
pubmed: 33894174
doi: 10.1016/S2215-0366(21)00133-4
Meyer J. Qualitative research in health care: Using qualitative methods in health related action research. BMJ. 2000;320(7228):178–81.
pubmed: 10634744
pmcid: 1128751
doi: 10.1136/bmj.320.7228.178
Smith JA. Qualitative psychology: a practical guide to research methods. London: SAGE; 2015.
Spuerck I, Stankovic M, Fatima SZ, Yilmaz E, Morgan N, Jacob J, Edbrooke-Childs J, Vostanis P. International youth mental health case study of peer researchers’ experiences. Res Involv Engagem. 2023;9(1):1–1.
doi: 10.1186/s40900-023-00443-4
Vaughn LM, Whetstone C, Boards A, Busch MD, Magnusson M, Määttä S. Partnering with insiders: s review of peer models across community-engaged research, education and social care. Health Soc Care Comm. 2018;26(6):769–86.
doi: 10.1111/hsc.12562
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, Altman DG, Moher D, Barber R, Denegri S, Entwistle A, Littlejohns P, Morris C, Suleman R, Thomas V, Tysall C. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:3453.
doi: 10.1136/bmj.j3453
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.
pubmed: 17872937
doi: 10.1093/intqhc/mzm042
Green MA, McKee M, Hamilton OKL, Shaw RJ, Macleod J, Boyd A, Katikireddi SV. Associations between self-reported healthcare disruption due to covid-19 and avoidable hospital admission: evidence from seven linked longitudinal studies for England. BMJ. 2023;382:e075133.
pubmed: 37468148
doi: 10.1136/bmj-2023-075133
England NHS. Vaccination: race and religion/belief. London: NHS England; 2021.
Bignall T, Jeraj S, Helsby E, Butt J. Racial disparities in mental health: Literature and evidence review. London: Race Equality Foundation; 2019.
Baracaia S, McNulty D, Baldwin S, Mytton J, Evison F, Raine R, Giacco D, Hutchings A, Barratt H. Mental health in hospital emergency departments: cross-sectional analysis of attendances in England 2013/2014. Emerg Med J. 2020;37(12):744–51.
pubmed: 33154100
doi: 10.1136/emermed-2019-209105
Magadi JP, Magadi MA. Ethnic inequalities in patient satisfaction with primary health care in England: Evidence from recent General Practitioner Patient Surveys (GPPS). PLoS One. 2022;17(12):e0270775.
pubmed: 36542601
pmcid: 9770381
doi: 10.1371/journal.pone.0270775
Appleton R, Williams J, Vera San Juan N, Needle JJ, Schlief M, Jordan H, Sheridan Rains L, Goulding L, Badhan M, Roxburgh E, Barnett P. Implementation, Adoption, and Perceptions of Telemental Health During the COVID-19 Pandemic: Systematic Review. J Med Internet Res. 2021;23(12):e31746.
pubmed: 34709179
pmcid: 8664153
doi: 10.2196/31746
Confederation NHS. Moving from silos to system improvement: what healthcare leaders want to see from the health disparities white paper. London: NHS Confederation; 2022.
O’Connor RC, Worthman CM, Abanga M, Athanassopoulou N, Boyce N, Chan LF, Christensen H, Das-Munshi J, Downs J, Koenen KC, Moutier CY, Templeton P, Batterham P, Brakspear K, Frank RG, Gilbody S, Gureje O, Henderson D, John A, Kabagambe W, Khan M, Kessler D, Kirtley OJ, Kline S, Kohrt B, Lincoln AK, Lund C, Mendenhall E, Miranda R, Mondelli V, Niederkrotenthaler T, Osborn D, Pirkis J, Pisani AR, Prawira B, Rachidi H, Seedat S, Siskind D, Vijayakumar L, Yip PSF. Gone Too Soon: priorities for action to prevent premature mortality associated with mental illness and mental distress. Lancet Psychiatry. 2023;10(6):452–64.
pubmed: 37182526
doi: 10.1016/S2215-0366(23)00058-5
National Confidential Enquiry into Patient Outcome and Death. Treat as One: Bridging the gap between mental and physical healthcare in general hospitals. London: National Confidential Enquiry into Patient Outcome and Death; 2017.
England H. Safely home: What happens when people leave hospital and care settings? London: Healthwatch England; 2015.
Shefer G, Henderson C, Howard LM, Murray J, Thornicroft G. Diagnostic overshadowing and other challenges involved in the diagnostic process of patients with mental illness who present in emergency departments with physical symptoms–a qualitative study. PLoS One. 2014;9(11):e111682.
pubmed: 25369130
pmcid: 4219761
doi: 10.1371/journal.pone.0111682
Adair CE, McDougall GM, Mitton CR, Joyce AS, Wild TC, Gordon A, et al. Continuity of care and health outcomes among persons with severe mental illness. Psychiatr Serv. 2005;56(9):1061–9.
pubmed: 16148318
doi: 10.1176/appi.ps.56.9.1061
Ride J, Kasteridis P, Gutacker N, Doran T, Rice N, Gravelle H, et al. Impact of family practice continuity of care on unplanned hospital use for people with serious mental illness. Health Serv Res. 2019;54(6):1316–25.
pubmed: 31598965
pmcid: 6863233
doi: 10.1111/1475-6773.13211
Beecroft N, Becker T, Griffiths G, Leese M, Slade M, Thornicroft G. Physical health care for people with severe mental illness: The role of the general practitioner (GP). J Ment Health. 2001;10:53–61.
doi: 10.1080/09638230020023615
Chauhan A, Walton M, Manias E, Walpola RL, Seale H, Latanik M, et al. The safety of health care for ethnic minority patients: a systematic review. Int J Equity Health. 2020;19(1):118.
pubmed: 32641040
pmcid: 7346414
doi: 10.1186/s12939-020-01223-2
Fernholm R, Holzmann MJ, Wachtler C, Szulkin R, Carlsson AC, Pukk HK. Patient-related factors associated with an increased risk of being a reported case of preventable harm in first-line health care: a case-control study. BMC Fam Pract. 2020;21(1):20. https://doi.org/10.1186/s12875-020-1087-4 .
doi: 10.1186/s12875-020-1087-4
pubmed: 31996137
pmcid: 6990540
Thomas R. The mental health patients dying on NHS wards from starvation and neglect. https://www.independent.co.uk/news/health/mental-health-nhs-patient-deaths-b2148501.html . Independent Print Limited; 2022.
Synergi Collaborative Centre. The impact of racism on mental health. London: Synergi Collaborative Centre; 2018. Available from: https://legacy.synergicollaborativecentre.co.uk/wp-content/uploads/2017/11/The-impact-of-racism-on-mental-health-briefing-paper-1.pdf .
Townsend E. Staggering rise in restraint of black people in mental healthcare. London: Health Service Journal; 2022.
McVie S, Murray K, Gorton V, Matthews B. Policing the pandemic in England and Wales: Police use of Fixed Penalty Notices from 27 March 2020 to 31 May 2021. Edinburgh: The University of Edinburgh; 2023.
INQUEST. I can’t breathe’: Race, death and British Policing. London: Inquest; 2023.
Baggott R. A funny thing happened on the way to the forum? Reforming patient and public involvement in the NHS in England. Public Administration. 2005;83(3):533–51.
doi: 10.1111/j.0033-3298.2005.00461.x
Rutter D, Manley C, Weaver T, Crawford MJ, Fulop N. Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London. Soc Sci Med. 2004;58(10):1973–84.
pubmed: 15020013
doi: 10.1016/S0277-9536(03)00401-5
Imison C, Kaur M, Dawson S. Supporting equity and tackling inequality: how can NIHR promote inclusion in public partnerships? London: National Institute of Health and Care Research; 2022.
Beresford P. Beyond the usual suspects London: Shaping Our Lives. 2013.
Ocloo J, Matthews M. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25(8):626–32.
pubmed: 26993640
pmcid: 4975844
doi: 10.1136/bmjqs-2015-004839