Experiences of COVID-19 and recovery: learning from polyphonic voices for communities, policymakers and health and social care providers.
Lead Research Organisation:
University of Oxford
Department Name: Primary Care Health Sciences
Abstract
The study aims to improve understanding of the ways in which patients from diverse communities have experienced COVID-19, provide an online resource as part of Healthtalk.org (to inform and support individuals and their families) and to co-produce flexible resources to support health and social care staff, communities and policy makers to 'build back better'.
The coming months, while the experience of the first year of the pandemic is still in focus, provide a critical opportunity to capture and learn from people's narratives of COVID-19. Interviewing people about their experience will help us to understand how they made sense (or struggle to make sense) of what has happened to them, the recovery process and their ideas about how services and community support could be improved. We will use interviews to document and understand what it has been like for people living with and through COVID-19 during these exceptional times and then use what we have learnt to develop resources for the public, community and services.
OBJECTIVES
1. To understand the different ways in which COVID-19 has been experienced in Britain. We will conduct in-depth interviews with a national, diverse sample of around 75 patients, who have managed/been cared for in different (non-ICU) settings.
2. To develop new approaches to make the research relevant to people from black and minority ethnic communities (BAME), including migrant workers. Our team of researchers with expertise in ethnicity and health will work with their networks and PPI on the design, conduct and application of the research.
3. To develop an experience-based online resource (for patients, public, policy makers, care providers) as part of the online platform Healthtalk.org. This well-established award winning site has, since 2001, published findings from over 110 studies in condition-specific sections, illustrated with video, audio and animated interview extracts.
4. To co-design, with communities, patients, carers, service providers in health and social care practical applications of the findings. This may include (in the shorter term) resources to support recovering (long) COVID-19 patients and learning how to 'build back better' services and community resources.
5. To compare findings with those identified by our international collaborators who are independently collecting COVID-19 narratives. The collaborators from 14 countries worldwide are meeting for workshops from December 2020-2022 to prepare cross country analyses and resources in addition to the existing online platforms (similar to Healthtalk.org in UK) in each country.
We have assembled a team with expertise in ethnicity and health (Douglas, Rai, Qureshi), research on patients' experiences (McNiven, Ziebland), General Practice (Salisbury, Dixon), PPI (Ali, Hussain), service improvement (Locock, Hinton) and delivery of online resources (Sanders). Our PPI co-applicants, advisory panels and our wider networks including BAME communities will help ensure that our interview focus, recruitment methods and the resources we create are inclusive and remain relevant throughout and beyond the 18 month project.
Outputs include a new COVID-19 section on Healthtalk.org (~75 interviews and 35 themed summaries), catalyst films and a theatre workshop, peer reviewed papers, reports, a methods paper on conducting remote research with seldom heard groups and cross country comparisons with our international collaborators.
The coming months, while the experience of the first year of the pandemic is still in focus, provide a critical opportunity to capture and learn from people's narratives of COVID-19. Interviewing people about their experience will help us to understand how they made sense (or struggle to make sense) of what has happened to them, the recovery process and their ideas about how services and community support could be improved. We will use interviews to document and understand what it has been like for people living with and through COVID-19 during these exceptional times and then use what we have learnt to develop resources for the public, community and services.
OBJECTIVES
1. To understand the different ways in which COVID-19 has been experienced in Britain. We will conduct in-depth interviews with a national, diverse sample of around 75 patients, who have managed/been cared for in different (non-ICU) settings.
2. To develop new approaches to make the research relevant to people from black and minority ethnic communities (BAME), including migrant workers. Our team of researchers with expertise in ethnicity and health will work with their networks and PPI on the design, conduct and application of the research.
3. To develop an experience-based online resource (for patients, public, policy makers, care providers) as part of the online platform Healthtalk.org. This well-established award winning site has, since 2001, published findings from over 110 studies in condition-specific sections, illustrated with video, audio and animated interview extracts.
4. To co-design, with communities, patients, carers, service providers in health and social care practical applications of the findings. This may include (in the shorter term) resources to support recovering (long) COVID-19 patients and learning how to 'build back better' services and community resources.
5. To compare findings with those identified by our international collaborators who are independently collecting COVID-19 narratives. The collaborators from 14 countries worldwide are meeting for workshops from December 2020-2022 to prepare cross country analyses and resources in addition to the existing online platforms (similar to Healthtalk.org in UK) in each country.
We have assembled a team with expertise in ethnicity and health (Douglas, Rai, Qureshi), research on patients' experiences (McNiven, Ziebland), General Practice (Salisbury, Dixon), PPI (Ali, Hussain), service improvement (Locock, Hinton) and delivery of online resources (Sanders). Our PPI co-applicants, advisory panels and our wider networks including BAME communities will help ensure that our interview focus, recruitment methods and the resources we create are inclusive and remain relevant throughout and beyond the 18 month project.
Outputs include a new COVID-19 section on Healthtalk.org (~75 interviews and 35 themed summaries), catalyst films and a theatre workshop, peer reviewed papers, reports, a methods paper on conducting remote research with seldom heard groups and cross country comparisons with our international collaborators.
Publications
Dowrick A
(2023)
Sharing uncertainty: Comparing patient narratives of help-seeking in the first year of the Covid-19 pandemic across the UK, USA, Brazil, Germany and Spain
in SSM - Qualitative Research in Health
Maclean A
(2023)
Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy.
in SSM. Qualitative research in health
| Title | What the Covid-19 pandemic taught me about racism |
| Description | We prepared a 45 min interactive scenario drawing on forum theatre approaches, which are based on the Theatre of the Oppressed: a set of dramatical techniques created by Augusto Boal. To understand what to include the interactive scenario we carried out a workshop built on a narrative interview study with 70 adults who had Covid between March, 2020, and November, 2021. After thematic analysis, the research team worked with theatre practitioners from the Performing Medicine company to create scenarios from verbatim interview content. The format allows audience members to watch scenarios and interact directly with actors, giving advice on how to improve the situation. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2022 |
| Impact | This performance took place at the UK Public Health Science conference in November 2022. Attendees felt that it encouraged them to reflect on social justice in their practice as public health professionals. |
| URL | https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)02219-X/fulltext |
| Description | Through this work we aimed to explore the experience of the pandemic from the perspective of those most impacted by both exposure to Covid-19 and the measures taken to contain it. We collected stories of personal experiences of Covid-19 illness from seventy people, the majority of whom were from seldom-heard groups participating in research for the first time. Significant new knowledge generated Collectively these interviews have contributed understanding about why the pandemic has disproportionately burdened people from ethnic minorities in the UK. Some of the key factors were: The role of employment in exposure to and experiences of COVID-19 Some participants were placed at greater risk of contracting COVID-19 through their work, and the precarity of certain forms of work (e.g. zero-hours contracts) meant they had to make challenging trade-offs between livelihood and health. The requirement for some to return to work quickly limited opportunities to fully recover. Household experiences of Covid-19 The ability to minimise transmission within households was particularly difficult for people living in small and/or multi-occupancy homes. Providing care at home to those who were ill with Covid required risking catching the virus. Networks of caring relationships and Covid transmission People with broad networks of caring responsibilities beyond the household had to navigate additional challenges of providing care while navigating social distancing. Those without caring responsibilities found it easier to minimise exposure in personal networks. What is important about these findings is that the participants articulate them within the context of a broader experiences of racialised inequality, showing that they are not simply a product of the pandemic but a longer-term issue of systemic racism. Improved methods Over two thirds of the sample identified as from minority communities in the UK. Our success in diverse recruitment has contributed insights into conducting inclusive, social justice oriented qualitative research. These included: ? Agreeing early on the study team's values on anti-racist, social justice oriented, intersectionality-informed research. ? Broadening the fieldwork team to ensure we had the right people to undertake interviews with different minority groups, e.g. those with particular language skills or community access. ? Using the networks of trusted senior academics working in the field of race and social justice to confer trust to more junior staff undertaking fieldwork. ? Doing careful costing at the application stage - building in time, money and resource for building trust and undertaking reciprocal favours with underfunded but strategically-placed organisations to support recruitment. Research collaborations We worked with DIPEx International colleagues in the USA and Brazil and found cross-national differences in peoples' acknowledgment and narration of structural privilege and disadvantage in their observations of Covid-19 in their countries and in their personal experiences. People in the US had the most fluency with voicing race directly. In Brazil, while some, especially younger people, demonstrated high racial consciousness, others struggled to identify and talk about racial relationships. In the UK, people voiced racial identifications, though often within white norms of politeness and an accompanying sense of discomfort. We are undertaking further work to explore these differences. |
| Exploitation Route | The outcomes of this funding might be taken forward by others in the following ways: - Inequalities in experiences of Covid: We have demonstrated how the inequalities that people experienced before the pandemic have been compounded in their experiences of living through the pandemic. This directs policy attention towards key areas when improvements could be in the organisation and delivery of public services, such as providing appropriate financial support to those who have to isolate. - Researching inequalities: This research has contributed an understanding of how inequality has shaped pandemic experiences by engaging seldom-heard communities in research. Other researchers can learn from our methodological approach for achieving maximum diversity in our interview sample. - Public health guidance for future pandemics: The impacts of infectious disease will be felt most strongly by members of society for whom social interaction is an essential part of everyday life. This is driven by professional roles, household occupation and caring responsibilities. Public health guidance should reflect that the ability to socially distance is not equal, and therefore the burden of illness will fall on those who cannot easily separate from one other. |
| Sectors | Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Healthcare |
| URL | https://healthtalk.org/Covid-19-recovery/overview |
| Description | Policy - We presented the findings to policy leaders from NHS England, including members of the Health Inequalities Improvement team, Experience of Care & Co-production team, and Personalised Care team. - We have made connections with the NHS England communications team, with our research informing their work developing culturally competent public health messaging. - We have collaborated with the NHS England Long Covid research team, combining insights from our projects to inform their plans for improving access to Long Covid support Practitioners - We worked with theatre company Performing Medicine to create an interactive performance to encourage reflection on the racial inequities of the pandemic. This was performed to public health practitioners at the UK Public Health Science conference in Glasgow in November 2022. In feedback attendees commented that the arts-based approach enabled them to emotionally engage in a complex issue, and that this encouraged them to foreground social justice in their public health practice. Public - We have held a series of public engagement events with minority groups in Oxford to share the findings of the research, particularly in relation to raising awareness of Long Covid. |
| First Year Of Impact | 2022 |
| Sector | Healthcare,Government, Democracy and Justice |
| Impact Types | Policy & public services |
| Description | APPG Coronavirus call for evidence on Long Covid and work |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.appgcoronavirus.uk/report-on-long-covid-2022 |
| Description | Scottish Long Covid Inquiry |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://yourviews.parliament.scot/covid19/long-covid-inquiry/consultation/view_respondent?show_all_q... |
| Description | Understanding and using family experiences of managing long Covid to support self care and timely access to services |
| Amount | £557,674 (GBP) |
| Funding ID | COV-LT2-0005 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2021 |
| End | 01/2023 |
| Title | University of Oxford MS&HERG archive - collection on experiences of Covid |
| Description | Collection of copyrighted qualitative interviews with permissions for future use (under licence) for teaching, research, broadcasting etc |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The data will become available for sharing after the study has completed. |
| Description | DIPEx International collaboration special issue of journal |
| Organisation | DIPEx International |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | SZ and colleagues in DIPEx International are co-editors of a special issue of the journal Social Science and medicine QHR with 8 papers from the wider DI consortium. |
| Collaborator Contribution | 5 colleagues from USA Brazil Japan and UK are the co-editors for the collection while another 15 have contributed papers. |
| Impact | Papers in preparation |
| Start Year | 2021 |
| Description | BBC TV report 'Concern over why ethnic minorities are not seeking help with long Covid', including interview with Dr Tanvi Rai |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A report on BBC TV local news in May 2022, about concerns that have been raised that people from ethnic minorities may not be seeking help with long Covid due to fears they might not be believed. Oxford's long Covid clinic has seen mostly white patients, with Dr Tanvi Rai, from Oxford University, saying people's fears could be "based on historical experiences". |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.bbc.co.uk/news/uk-61405268 |
| Description | Community event about Covid experiences |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | This activity was an outreach event with minority communities in Oxford to share information about the study findings, particularly about the impact of Long Covid. The success of the first event led to a follow-up engagement event in 2023. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Dipex International Annual Meeting, 22/23 November 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A summary of research in progress about UK experiences of Covid-19 presented to other researchers form the DIPEx International consortium. Has led to the development of a special issue of Social Science and Medicine: Qualitative Research in Health comparing experiences of Covid-19 across 9 countries. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Dipex International conference in Weggis, Switzerland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A talk / workshop at the Dipex International conference presented by members of the Covid research team. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Family Long Covid blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A blog to discuss how Long Covid affects families co-authored by a pre-doctoral assistant and SZ. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.phc.ox.ac.uk/news/blog/long-covid-like-most-chronic-illness-is-having-a-dramatic-effect-... |
| Description | Healthtalk website on diverse experiences of Covid in the community |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | We created a new section of healthtalk.org with extracts from the interviews undertaken for the study. We distributed this widely among project partners and professional networks. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://healthtalk.org/Covid-19-recovery/overview |
| Description | If social determinants of health are so important shouldn't we ask patients about them? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A talk entitled 'If social determinants of health are so important shouldn't we ask patients about them?' given by Sue Ziebland & Dr Andrew Moscrop, on 10 Nov 2021, as part of the Green Templeton College (University of Oxford) Health & Care initiative. Discussion and debate afterwards and on-going research interest generated. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Imperilled reproduction: narratives of fertility and covid-19 vaccination. Reproductive Expectations: Disruption, Transgression and Re-Configuration, 27 October 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A presentation given at a virtual workshop convened by the Centre for Health, Law & Society at the University of Bristol to scholars of reproduction working across the fields of anthropology, law, and social policy. Title: Exploration of Covid-19 vaccine hesitancy and how this connects to ideas about fertility. Has led to further collaboration developing a proposal for a special issue of 'Women's Studies International Forum.' |
| Year(s) Of Engagement Activity | 2021 |
| Description | International women's day community health event - Long Covid |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | The research group worked with a range of community organisations to arrange a women's health event with a focus on Long Covid. This event was aimed at women from minority ethnic backgrounds. 50 people attended and received information about Long Covid and seeking support and were updated about ongoing research. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Interrogating Speculative Futures Workshop, Goldsmith's University. 19-20 July 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Researcher gave a presentation entitled 'The speculative labour of COVID-19: Imagining Immunity'. Exploration of lay understandings of COVID-19 immunity and how this contributes to decisions about vaccination. Has led to further collaboration in contributing to a proposal for a special issue of Medical Anthropology. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Monday 07 November 2022, meeting with representatives of NHSE on experiences of COVID |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A talk given by the Covid research group to NHSE, including reports on the latest research findings |
| Year(s) Of Engagement Activity | 2022 |
| Description | Patient perspectives on Covid-19: hospitalisation, Long Covid, & inequality |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | An online launch and discussion about what we have learnt from four qualitative studies into experiences of the Covid-19 pandemic. All conducted in 2020-22, the sister studies have explored four dimensions of patient and family experience: • Variation - Exploring diverse experiences of COVID-19, with a particular focus on minoritised groups. Funded by ESRC • Severity - Exploring experiences of COVID-19 patients (and their families) who were treated in ICU Funded by THIS • Duration - Exploring experiences of Long Covid in adults Funded by CSO, Scotland • Family dynamics - Exploring experiences of Long Covid in children, young people and their families Funded by NIHR Interviews were wide ranging covering everything from first hearing about Covid and trying to make sense of events through to experiences of illness, seeking healthcare, caring and impact on school, work, relationships and finances. Each study has been published as a public-facing section, illustrated with hundreds of video and audio extracts from the interviews, on Healthtalk.org. The aim of the event was to launch the four collections, hear from expert discussants, and consider further uses of the collections for public information and support, teaching and learning and planning services. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation at EASST conference - Care as resistance: Navigating tensions and trade-offs in care during times of infectious sociality |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at the EASST conference in Madrid, delivering a talk on the tensions and trade-offs in networks of caring relations during the pandemic. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation at Medical Sociology conference on Covid public health messaging |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dowrick, Rai and Ziebland prepared and delivered a presentation at the 2022 British Sociological Association Medical Sociology conference - Public messaging on COVID-19, risk and reception: Sanitary citizenship in pandemic times. This prompted debate among the audience about inequalities in pandemic experiences. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Department of Primary Care Health Sciences on Covid research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Members of the research team presented insights from two Covid projects - an ESRC funded study about inequalities in Covid-19 and an NIHR funded study about Long Covid in families. This prompted discussion among attendees from the Nuffield Department of Primary Care Health Sciences about how inequalities can be mitigated. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Long Covid qualitative research network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The research team presented the outcomes of the research to members of the Long Covid qualitative research network. During the discussion we identified important areas of commonality with other research projects and set agendas for future collaborative work. |
| Year(s) Of Engagement Activity | 2022 |