Over the past few months the coronavirus (COVID-19) pandemic has brought about so much change to day-to-day lives, particularly for the CF community, who have all been affected by the government advice to shield. Everyone in the CF community will have experienced their own challenges, worries, practical issues and even successes through this time – as the saying goes, “We’re all in the same storm, but we’re in different boats.”
At the Trust, we feel it is important to build a picture of these different experiences to provide the best possible support, and we hope it will also inform policy makers on the best way forward in the months ahead. We need to capture how you have felt, how you have coped, what did help, what didn’t help, and what could make things easier. This information can only come from you.
Fortunately, there is lots of interest in this and we’ve been approached by many organisations keen to carry out surveys. Having looked at them carefully, we’ve chosen to work closely with two research teams to develop surveys to help us all better understand the experiences of people who are shielding. We have been able to contribute to these surveys and we have involved people with CF in their development whenever possible. We will also be able to access the results, helping us to better help you now and in the future.
Below you can find details of the surveys and how to join in – do read through carefully to find the right one(s) for you to complete. You can complete more than one survey if you want to, or whichever one you feel you fit into best. The surveys are UK-wide.
The SHARE Study
This survey, led by the University of Southampton, is for parents of a child with cystic fibrosis and for children and young people with CF who are 12–30 years of age, across the UK. The survey includes some questions and space for you to share your experiences. We’re really pleased that, as well as capturing parents’ views, this gives young people with CF a chance to share their experiences.
University of Huddersfield Shielding Research Project
This research is about the experiences, concerns and support needs of people aged over 18 who are shielding and their family members (including partners, parents etc). It involves completing an online survey, with the option of later taking part in an interview or focus group, if you want to. The survey is for anyone in the UK who is shielding, and results from the study will be used to provide guidance to health professionals, policy makers and charities during the current COVID-19 pandemic and for future planning.
We’re also aware that Public Health Scotland have released their own survey to understand the needs of people in Scotland who are shielding. The survey is open until 14 June.
In Northern Ireland, the Patient and Clinical Council has a survey for people who have been advised to shield due to the risks of COVID-19, and those who are supporting them.