Summary

Various guidance has been produced to inform and advise the public on how to respond during the COVID-19 outbreak, including those who are seen to be at greater risk of severe illness from COVID-19 (defined as clinically extremely vulnerable).

On Thursday 30th April 2020, we facilitated a video call via Zoom (5:30-6:30pm), with 16 members of the public from across the UK that were recruited via direct email contact. Attendees were asked to meet the following criteria in order to take part in the call:

• Following guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19 (referred to from now on as “the Guidance”); or
• Caring for/have a family member/friend who is following or was advised to follow this Guidance. 

Attendees were invited to review the online Guidance (updated 17.04.20) before the call so that they could share their views and provide feedback on its clarity, what information they felt was missing and suggested improvements.

The agenda for the call included (1) Introduction to the Health Protection Research Unit (HPRU) in Modelling and Health Economics; (2) Introduction to the Guidance discussions; (3) Anonymous poll; (4) Small group discussions; (5) Next steps; (6) Questions.

Key Insights

The following points summarise the main insights, experiences and ideas that were shared during our small group discussions.

• Overall, attendees considered the Guidance to be clear, but views were mixed on how easy it is to understand and/or follow.
  ➢ In our online poll, 10 attendees reported the guidance to be somewhat or very easy to understand, while 4 felt the Guidance was somewhat difficult to understand.
  ➢ This was reflected in the breakout room discussions: “I think the guidance was pretty clear to be honest and my medication… [was] is specifically listed, so I knew that I was included in that demographic even though I didn’t receive a text or letter until last week”; “Well-structured but text based”; “Very easy to understand but not so easy to follow”.
  
  
• Attendees felt the Guidance doesn’t address individuals’ different levels of ability to adhere. 
  ➢ It was determined that adherence can mean different things to different people and people’s ability to follow the Guidance depended on their personal circumstances.
  ➢ Certain situations were seen to make shielding more difficult, e.g. living in confined spaces and/or alone; inability to access home deliveries for groceries; inability to access support for healthcare needs.
  ➢ A number of attendees shared the view that ‘household shielding’ guidance was easier to manage than ‘living with others’ guidance.
  
  
• Many felt the negative impact that following the Guidance may have on people’s health, well-being and quality of life should be more acknowledged and better supported.
  ➢ Discussions revealed conflicts between the need to adhere to guidance designed to protect individuals from coronavirus infection and the need to continue medical treatment and maintain their health and well-being.
  ➢ Attendees felt that recognising these competing factors, in particular in the tone and language used within the guidance, would be welcomed.

• Key information that was felt to be missing included:
  ➢ Information and tips to promote health and well-being, e.g. nutrition and exercise while shielding; impact of Ramadan and fasting.
  ➢ Information and guidance to relieve the negative impact of shielding, e.g. dealing with loneliness, how to access food deliveries telephone or video consultations with clinicians.
  ➢ Empowering guidance and activities to mitigate shielded people from feeling like “vulnerable” people, e.g. ways to support the pandemic response from home.
  ➢ More information and clarity for carers and family members, e.g. what should happen if the carer gets sick.
  ➢ More information about less known/common symptoms of COVID-19 to be aware of given that many cases are mild and some people may be infectious before or without symptoms.
  ➢ Guidance on what they should expect and what they need to know once restrictions are lifted, e.g. information about virus and antibody testing and what they/others can and cannot do.
  
  
• Attendees suggested several improvements that could be considered for future guidance:
  ➢ Clarity around what individuals MUST follow and what they can CHOOSE to follow depending on their circumstances.
  ➢ Improving how understandable the content is, e.g. including example case studies and/or key definitions or glossary of terms.
  ➢ Improving people’s awareness of the Guidance, and any updates, using multiple channels.
  ➢ Improving the accessibility and usability of the Guidance, e.g. including the ability to personalise the content and/or navigate to the parts that are relevant to the reader; signposting to translations; including text-to-speech functionality.
  ➢ Using more positive language and empowering tone of voice.
  ➢ A suggestion was made to involve the public in the creation of the Guidance so that it met their needs.