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
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
| Description | 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. 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. |
| 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 |
| 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 | 07/2021 |
| 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. Analysis is still ongoing. |
| 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 | 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 | 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 |