What is the purpose of this research?
We are experiencing an unusual situation with the coronavirus pandemic. People with long-lasting health conditions (that is, conditions that you will have had for more than 3 months) or disabilities often already find it hard to manage daily living. We believe that such challenges could be much worse for many such people during the pandemic, whether or not they are on the ‘sheltered persons’ list. But others are reporting that nothing has changed much for them. There are also stories of people coping better with their conditions during the pandemic, perhaps because they do not feel under pressure to leave the house, or because other people are taking more time to support them.
This project is working to understand the different situations of people with different conditions and disabilities during the pandemic and shortly afterwards and compare these with people without these experiences. We are also interested in hearing about how ethnicity affects this, and about the experiences of people born outside the UK. This is important to ensure that these voices are heard, as we believe that many people need better help but are not considered for this.
Initial findings will be shared widely to try to ensure people with long term conditions and disabilities and those from ethnic minorities or not born in the UK are represented in current planning. At the end of the study, our findings will also mean we can build up a picture of the country’s neglected needs for people with long term conditions and disabilities, and ethnic minorities, as well as plan for the consequences of the pandemic on people’s health and feeling of wellbeing. Since we are also collecting data from white British people we will also be able to provide information that can help in planning for this majority group too although that is not our focus.
Who can take part in this research?
We are running a survey for anyone in the UK who has a long term condition or disability that affects the way they are able to live their life. This includes long covid.
We have also interviewed people with a long term condition or disability who are of Central and East European, Arab, African or South Asian heritage (recent migrants or second generation). We have subsequently asked them to take part in workshops to see how their experiences change over the next year or so.
At the end of the study we will interview health and social care professionals who provide services to people with a long term condition or disability.
Why are you focusing on people of Central and East European, Arab, African and South Asian heritage ?
We have chosen these ethnicities to get diverse ethnic minority experience. If we included all ethnic groups the study would be too large to manage. However, we have interviewed some people from other groups too. These four groups were chosen because we already know they have very different pandemic experiences.
What will happen at the workshops?
The research workshops used pictures, sound and photos to summarise some findings from our interviews. These were used as prompts for discussion about how things have changed since the interviews were undertaken last autumn.
We are now preparing to do the co-create workshops, more news soon but what we can say now is that they will involve plasticine!
If I agree to take part can I change my mind later?
Participation in the study is completely optional. If you decide not to take part, or change your mind, there will be no effect at all on you and you can simply forget about the study. If you do decide to take part, you will be asked to sign a ‘consent form’ stating that you are happy to take part; however, you have the right to withdraw from the study at any point without giving a reason if you change your mind. Withdrawing from the study will not affect you in any way.
If you do decide to withdraw from the study, we may ask for your reasons behind this, but you do not have to tell us.
What will happen to the study data?
We will involve many people, and analyse all the data together. We will then publish summaries of our analysis and share these summaries in professional meetings so that more people are aware of the different experiences. In these summaries we may include extracts from some interviews and workshops. If we do so, we will make sure the person cannot be recognised from the extract. We will never use real names. We will store the interviews and workshop recordings on special secure computers at UCL that are designed especially to keep research data safe.
Is this study ethical?
This study has been reviewed by an independent group of people, called the Research Ethics Committee, to protect participant safety, rights, well-being and dignity. The study has been approved by the University College London (UCL) Research Ethics Committee (Reference number: UCL IoE REC 1450 Covid-19).
How can I take part?
Please go to our ‘Get Involved’ page for more information on how you can take part.
What are the possible benefits of taking part?
Overall, we do not know whether anyone will experience any direct benefits from taking part in this research, but we hope that participants will enjoy and value their role in helping us to develop reports to make people including the government more aware of their experiences.
What are the possible disadvantages of taking part?
We believe that this study is safe and do not expect anyone to suffer any harm or injury because of taking part.
If anyone becomes distressed whilst taking part, we will stop the session and ask if they want to continue. If they do want to continue, we will give them time to recover before continuing. If they wish to stop, they are free to do so, and we will provide the contact details of professional people they may wish to talk to.
Who is organising this research?
The research is sponsored by University College London (UCL). Carol Rivas is the Chief Investigator and has overall responsibility for the study.
What will happen to the results of the project?
The results of this research will be reported by University College London (UCL). We also want to publish results in scientific journals and present the findings at research conferences and to government and other professionals. Real names will not be used in any report or publication, and everything will be anonymised.