Information taken from short report for the Chief Scientist Office at [insert link and reference when available]

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Many people have fallen ill during the pandemic, with COVID-19 and other health conditions, and have felt socially isolated due to the lack of family support possible at home or in hospital.

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This study aimed to find out more about people’s experiences of:

• feeling socially isolated when experiencing COVID-19 or other illnesses or health conditions;

• what support people might need during their recovery; and

• what factors stakeholders think will affect access to this support.

 

We aimed to use these insights to make recommendations for the support that is likely to be needed, and how to make such support accessible.

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We had several stages to our research study:

First, we wanted to learn about people’s experiences during the early stages of the pandemic and later. We carried out:

1. An online survey of people’s experiences of illness and isolation (July/August 2020).

2. People who completed the initial survey were asked if they would allow us to contact them again after six months with another survey to find out how things are going. This is now underway (February/March 2021).

3. People who complete the follow-up survey are also asked if we can interview them in more detail to hear about their experiences in their own words (qualitative interviews).

 

We analysed the responses and developed recommendations for meeting the support needs of participants. We sought feedback from stakeholders in the second part of the study. Stakeholders included people who had experienced COVID-19, who were experiencing Long-COVID, people who provided services that support people, such as allied health professionals, and people involved in developing or funding services. In order to find out whether respondents felt the recommendations were appropriate and whether we had missed anything, we carried out:

1. An online survey of the views of stakeholders

2. Online focus groups and interviews with eight people who had Long-COVID and people and an advocate for people living on low incomes

3. Two tweetchats with service providers, including nursing and allied health professionals.

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We used the results to refine and add to the recommendations, which are listed below. These are summarised within four principles briefly outlined below:

• Support should be person-centred and needs-led, with a more holistic approach to supporting people in their recovery and return to life roles and activities wherever possible.

• Policy should be coordinated across sectors to ensure clear messaging and avoid confusion.

• Information should be reliable, trusted, up-to-date, evidence-based and easily accessible to people with different abilities and resources.

• Access to support should be equitable and not affected by personal, population or lifestyle characteristics of the individual.

 

Recommendations:

1. The longer-term experiences of people who have had COVID-19 should be recognised and recorded internationally.

2. Receiving diagnosis and treatment of longer-term conditions relating to COVID-19 should be equal for everyone and evaluated based on patient history and clinical evaluation.

3. There should be national evidence-based guidelines to help develop coordinated policy and services across sectors that improve the experiences of people experiencing COVID-19 and its long-term impacts.

4. There should be national guidelines and education for employers to help people return to all workplaces in a way that supports their recovery.

5. There should be a central, interactive online resource that helps people find current and appropriate support at the time when they need it, developed together with people who have experienced COVID-19.

6. Where people need more support or find it hard to use online resources, they should be able to talk to someone on a trusted telephone helpline about how to find health-related, financial, community, and/or social support.

7. People need person-centred, needs-led 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.

8. According to assessed need, people recovering from COVID-19 should have help with self-care, caring for others, and domestic tasks, including decontamination of the self-isolation space.

9. People should be able to access specialist therapy services that can help them cope with the impacts of COVID-19 on their mental health.

10. People should be able to access needs-led support for recovery from professionals with appropriate expertise to help them with the impacts of COVID-19, and help them safely increase their activities.

11. People should have support from appropriately trained exercise and health promotion professionals to help them safely increase their physical activity and exercise after COVID-19.

12. 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.

13. People who are recovering from COVID-19 should be individually assessed for inclusion in the list of people who need to shield.

14. Professionals who work with people who have had COVID-19 should be educated about their experiences, needs, strategies and interventions, and influences on access to support.

15. Researchers should work meaningfully with people of all ages who have had COVID-19 to explore diverse short-term and long-term experiences of COVID-19 and how to provide effective and accessible support.

16. Appropriate support should be made available to professionals who are caring for people with COVID-19.

17. Services that aim to support public health and reduce risk of injury should be strengthened to reduce the risks from isolation, stress, grief and working at home.

18. Existing services should ensure that people know how to safely access appropriate support for developing, long-term or degenerating conditions.