Karen Spilsbury,^1,2,3 Reena Devi,^1,2 Amrit Daffu-O’Reilly,¹ Alys Griffiths,^2,4 Kirsty Haunch,^1,2   Liz Jones,⁵ and Julienne Meyer^5,6

¹University of Leeds, ²NICHE-Leeds, ³Applied Research Collaboration for Yorkshire and Humber (YHARC), ⁴Leeds Beckett University, ⁵National Care Forum, ⁶City, University of London

The overall aim of our work was to capture the experiences of frontline care home and NHS staff caring for older people with COVID-19 and to share the lessons learnt about the presentation, trajectories, and management of the infection with care homes that have and have not yet experienced the virus.

This research was driven by the reflective and responsible leadership within the social care sector: the National Care Forum (NCF) were very keen to learn as quickly as possible from the early days of the pandemic and to share this learning to support the sector. The work presented in this report therefore represents an important partnership between researchers at the University of Leeds and the National Care Forum (NCF), working with care home colleagues, to generate findings with practical relevance. We conducted two phases of work during June to September 2020:

1. Interviews with frontline care home and NHS staff in June and July (n=35) to gather in-depth understanding of:
   • the clinical presentation and illness trajectory of COVID-19 in older people (to date);
   • what worked well, or what more was needed, for care and treatment; and
   • lessons learnt for supporting infected older people to recover or die well.
2. Consultation with senior operational and quality managers in care homes in September (n=11) to establish:
   • the resonance and relevance of Phase 1 findings; and
   • strategies for managing COVID-19 at an organisational level within the home for the mutual benefit of residents, relatives and staff.

The findings are presented under the following themes:

• Clinical presentation: COVID-19 does not always present as a cough and fever in older people
• Unpredictable illness trajectory 
• Managing symptoms and providing supportive care: No ‘magic bullet’
• Recovery and rehabilitation: Promoting physical, cognitive and emotional well-being post-virus
• End of life care: Being prepared and supported
• Infection prevention and control: ensuring relevance, preventing complacency and promoting confidence among care home staff and residents
• Promoting partnership through cross sector working and support

It is important to highlight that these findings are located within a particular time frame and context. It is recognised (and acknowledged) that over time understanding and knowledge about the presentation, trajectory, treatment and support of older people with COVID-19 is developing, alongside evidence and guidance. However, this practical knowledge collected during the first wave has real value for the care home sector, and particularly as they move into a second wave.

The report concludes with a call to action. Many of these actions can be grasped by the sector; however, there are levers and actions needed that are beyond the control of the sector and need support and action from government. Finally, a call for researchers and funders to work in partnership with the sector to ensure research fully addresses the priorities of residents, their relatives, staff, and care provider organisations. The COVID-19 pandemic has highlighted the need for research with and for the care home sector.

The full report is available here.

Acknowledgement:

This research was funded by the Dunhill Medical Trust (project reference 2020CD\1). The views expressed are those of the author(s) and not necessarily those of the funder.