We are hosting a physiotalk that is part of a research project – the Support after COVID study @SupportAfterCo1. The chat will be on Monday 5th October at 8pm BST. There will also be an identical chat by the We Communities team using #WeMDT on Monday 28th September as the research team are aiming to get as many peoples views as possible during the tweetchats.
The research team write: We are a multidisciplinary team of health researchers based at Queen Margaret University, Edinburgh, in Scotland and this project is funded by the Chief Scientist Office. We are very grateful to everyone who helped us with our first survey about experiences of life during Covid-19. We have analysed the responses and written recommendations for what services people will need moving forward. We would like your thoughts on these recommendations.
Enormous numbers of people worldwide are experiencing social isolation during illness at home, or without family support in hospital. We know that after experiencing intensive care, people need support to cope with the trauma and its physical impacts. We don’t know what additional needs people will have after being socially isolated at home during illness. In the ‘Support After Covid’ Study we carried out a large survey to find out more about people’s experiences over the last few months.
Our survey closed at the end of August and we had 835 responses. 548 people had felt socially isolated, 208 were ill while socially isolated and 134 of these people thought this illness was due to Covid-19. Of the people who had Covid-19, 46 felt that they had recovered, in an average of about 4 weeks (between 1 and 17 weeks). The 119 people who did not feel they had recovered when they completed the survey told us about what they were still experiencing and how much they were bothered by each challenge. We found that the most common difficulty was fatigue, and then breathlessness, other symptoms that people told us of, walking around, and looking after their home. We learned that people are experiencing a wide range of unexpected challenges that included cardiac and neurological symptoms as well as respiratory. People who had more numerous symptoms and challenges also tended to find that these had a greater impact on their lives.
We categorised the responses, and you can find the full list of categories as well as how many people indicated that they needed each type of support on our web page at: https://www.cpcpr.org/covid-19-2. We used all the information to write recommendations for interventions and services that are likely to be needed. We are now interested in your thoughts on these. We also want to learn more about anything that might affect access to support, so that we can consider the best ways to make services and interventions easily available to people who need them.
Abbreviated versions of our recommendations are listed below, with full statements at https://www.cpcpr.org/covid-19-2. We have then listed topics for discussion within the tweetchat.
|The longer-term experiences of people who have had Covid-19 should be recognised internationally.|
|Receiving diagnosis and treatment of longer-term conditions relating to Covid-19 should be equal for everyone whether or not they were in hospital or had a positive test.|
|There should be national guidelines to help develop coordinated policy and services across sectors that improve the experiences of people experiencing Covid-19 and its impacts.|
|There should be national guidelines to help people return to their workplace in a way that supports their recovery.|
|There should be a central, interactive online resource that helps people find appropriate support at the time when they need it, developed together with people who have experienced Covid-19.|
|Where people need more support or find it hard to use online resources, they should be able to talk to someone on the telephone about how to find financial, community, and/or social support.|
|People need person-centred support from their local health-services where they are referred quickly for investigations and specialist support relating to physical and/or mental health needs, ideally through Covid-19 Clinics.|
|While they are recovering, people should have help with self-care, caring for others, and domestic tasks, including decontamination of the self-isolation space.|
|People should be able to access specialist therapy services that can help them cope with the impacts of Covid-19 on their mental health.|
|People should be able to access rehabilitation from the appropriate professionals to help them with the physical impacts of Covid-19 and help them safely increase their activities.|
|People should have support from exercise and health promotion professionals to help them safely increase their physical activity and exercise after Covid-19.|
|There should be support for the development and ongoing provision of a network of local and national support groups for people who are recovering from Covid-19|
|There should be careful consideration of whether people who are recovering from Covid-19 should be included in any future list of people who need to ‘shield.’|
|Professionals who work with people who have had Covid-19 should be educated about their experiences, needs, strategies and interventions.|
|Researchers should work with people who have had Covid-19 to explore how different short-term and long-term experiences of Covid-19 can be and how to provide effective support.|
Tweetchat discussion topics:
- What is your area of practice?
- Ideally, how do you think you / your profession would be most involved in supporting people when they are experiencing / recovering from Covid-19?
- When considering the kinds of support you are / your profession is most likely to provide, what do you think it will be like for people trying to access this support? Do you have any experiences or examples?
- From your perspective, do you have any additions or clarifications that you think are needed to the recommendations?
We will also have three polls during the chat, to find out more about people who are involved in the chat and their views. These will relate to:
- What kinds of service provision people are involved in (acute / rehabilitation / community /not relevant or other)
- How involved people are / think they will be in supporting people who have / have had Covid-19 ( substantially involved, somewhat involved, peripherally involved, not very involved but interested)
- Your thoughts about how much access people will have to support for longer-term impacts of Covid-19 (access across the UK / access if skilled at seeking help / access only in some parts of the UK / difficulty getting access to support across the UK)
Another important thing to be aware of is that we are using this tweetchat as part of our research project. To enable you to consider whether you would like to take part we would like to explain about the research project and how it is to be conducted. If you do decide to take part then your participation would be voluntary and you can contribute as little or as much as you like to the research.
Your involvement Your involvement in the study would be participation in a single tweetchat to explore questions around your perceptions of support after covid. The tweetchat discussion topics are included above. We are interested in the thoughts of anyone over 18 years old and who is affected by such recommendations, or who can affect service provision (‘stakeholder’).
If you participate in the tweetchat then your consent to take part in the research will be implied: this stance will be reiterated at the start of the chat and at intervals throughout the chat. The responses from the tweetchat will be collected as a transcript and analysed for emerging themes. We will be reporting back to the Chief Scientist Office and will also communicate what we learn in as many ways as possible. We aim to influence decision-making around service provision, but we cannot promise that you will have direct benefit from taking part.
Will my responses be private? As Twitter is a public space, if you participate in the tweetchat your responses will be in the public domain. However, you can contact the lead researcher after the tweetchat if you would prefer your tweets not to be analysed in the research study (Cathy Bulley on firstname.lastname@example.org). The research will be presented for publication to appropriate journals and professional conferences. People could search for your tweet if they wished, but we will not identify you in our reporting.
Ethical approval The study has received ethical approval from Queen Margaret University Ethics Committee
Prof. Cathy Bulley, Prof. Jan Dewing, Prof. Brendan McCormack, Dr Eleanor Curnow, Dr Kath Nicol, Dr Lisa Salisbury, Dr Vaibhav Tyagi, Dr Kim Stuart, Ms Ruth Magowan (School of Health Sciences, Queen Margaret University; representing Nursing, Occupational Therapy, Physiotherapy, Experience of Covid-19)
If you missed the chat you can catch up with the transcript here