Long Covid is the state of not recovering for weeks or months after contracting SARSCoV2 infection. The World Health Organization (WHO) defines Post COVID-19 condition (Long Covid) as the condition occurring in individuals with a history or probable or confirmed SARSCoV2 infection 3 months after the onset with symptoms that last at least 2 months, cannot be explained by an alternative diagnosis and generally impacts everyday functioning. The impact of the illness and of potential life changes to manage (live with) the illness has received less attention. Issues with test availability, accessibility and accuracy early in the pandemic as well as not requiring health care in the acute phase could lead to later health concerns not being addressed. Even with subsequent availability of community-based testing, disincentives to seek testing including stigma and barriers against self-isolation (loss of income and essential social support) are likely much stronger in disadvantaged populations exacerbating health inequalities.
Data from the UK Coronavirus (COVID-19) Infection Survey showed that 50% of people with self-reported Long Covid first had COVID-19 at least one year previously and 24% at least two years previously. The prevalence was highest in people aged 35 to 69 years, women, in deprived areas, and in those with another activity-limiting health condition or disability. Long Covid can have profound effects on a person’s physical and cognitive functions affecting their ability to perform daily activities and their quality of life. Like other “invisible” medical conditions, seeking understanding and support from others may be difficult and more so for individuals from certain groups, such as women and ethnic minorities, who are at increased risk of having their experiences trivialised or discredited in a healthcare context. We conducted a survey of 888 UK adults living with Long Covid and found that 95% experienced stigma with nearly two-thirds reporting overt experiences of discrimination. Two-thirds said they are very careful who they tell about their illness, and a third regretted telling someone about it. It is important to explore the impact of the term/diagnosis of Long Covid and how experiences of stigma affect seeking help and/or support for healthcare and from employers.
The aim of the proposed project is to engage the public in exploring harmful narratives around Long Covid and developing language that can be used when communicating about Long Covid with the public while respecting the lived experience of people with LC and reducing stigma.
This proposed project will identify language that reduces stigma and respects the lived experiences of people with Long Covid.
• To discuss how the term/diagnosis Long Covid helps or hinders seeking or getting help and support
• To explore how certain language is linked to experiences of stigma and the impact of these experiences on seeking help and support
• To explore the narrative around mental and physical health and how language around long covid, mental health, stress, etc. is linked to stigma
As part of this project, we will work with adults and children with lived experience of Long Covid. Based on people’s characteristics – including their age, ethnicity, gender, area deprivation, other chronic conditions – preferences on language options may differ. We will therefore work with subgroups of individuals to identify their views. These subgroups may come together at the end to discuss common and generally applicable and acceptable language.
We will have these discussions as part of online public consultations. These consultations will be facilitated by a public engagement officer (to be appointed for this project). Public contributors will be identified through our existing networks and links with Long Covid support groups.
Draft questions will be drafted by the project teams for the public consultations as a guide but the consultations will evolve based on the discussions within the groups. Public contributors will be encouraged to discuss their perspectives verbally, and/or use interactive platforms such as Google Jamboard which allow contributors to share ideas in real time anonymously through post-it notes on an interactive whiteboard. Public contributors will be identified through online Long Covid support groups and through advertising on social media.
Immediate outputs from this work will include a summary report summarising the discussions on appropriate language identified by researchers and the public which will then be written up as an article in a journal interested in developing good public engagement practice. Findings from the project will be shared widely with the public, for example, through university media and social media. We will also make an animated video highlighting the main messages. The dissemination of the work will inform and support advocacy, engagement with policy makers and allow appropriate dissemination of research findings to the public and policy stakeholders in the future.
Experiences of stigma can hinder public health by compromising mental health and engagement with health services. Understanding language and how to reduce stigma will inform research and policy on how to improve equitable access to services especially for the most vulnerable.
SDG3 - Good Health and Well-Being;SDG5 - Gender Equality;SDG10 - Reduced Inequalities ;
Project Lead: Dr Nida Ziauddee
Prof Nisreen A Alwan, Dr Jeeva MacMillan-John, Mirembe Woodrow, Dr Donna Clutterbuck