A new report exploring the experiences of people in England affected by serious illness has highlighted their common concerns and recommendations for palliative care research during COVID-19.
The report is the result of a rapid virtual public consultation held between March and April 2020, by a group of researchers led by the Cicely Saunders Institute at King’s College London. Researchers consulted with people affected by serious illness and their families from across the UK, to gain an understanding of their emerging experiences, concerns and research priorities in relation to palliative care during the COVID-19 pandemic. The consultation is important in giving a voice to this group of people, so their experiences contribute to the palliative care response to COVID-19.
Research bodies in the UK have emphasised the importance of public involvement in shaping health research responding to COVID-19, however involvement of the public in research in the UK has reduced substantially during this time. Even though the palliative care research community has responded quickly to COVID-19, little is known about the impact on people affected by serious illness in relation to palliative care during COVID-19.
Using virtual methods (online forum, email, telephone), the research team consulted 44 members of their patient and public involvement networks. Responses were synthesised into categories by a team including people with clinical, academic and lived experience relevant to palliative care. By working collaboratively with four patient and public involvement groups across London, Sheffield, Hull and Bristol, this rapid consultation provides the research community with valuable insight into the day to day impact of COVID-19 on people living with, or caring for someone with, serious illness.
The consultation highlighted concerns around reduced professional support; strains on informal care networks; risk of reduced quality of care; and increased loss, grief and bereavement. Responses described anxieties around disrupted services, and concerns for how existing health inequalities may be exacerbated. Issues around increasing informal care responsibilities, as well as losing informal support due to isolation measures, were also raised. Contributors had questions around how individualised and holistic care would be maintained, and how care may be rationed with rising demand for healthcare. Many also felt that bereavement support should be prioritised.
We want to ensure that the research priorities in palliative care are rooted in the experiences, concerns and priorities of people with serious illness and their families. Our patient and public members make crucial contributions to enabling us to ask the right questions important to patients and families. Understanding the impact of coronavirus on people affected by serious illness was vital to guide research during the pandemic and afterwards. We are now working to promote these stories and priorities through our networks. We want researchers, clinicians and PPI members to take these priorities forward.– Catherine J Evans, HEE/NIHR Senior Clinical Lecturer and Honorary Nurse Consultant in Palliative care
Based on the consultation, recommendations for research focused on innovating access to palliative care during a pandemic and beyond. They include:
- Ensuring timely professional support with increasing service demand
- Sustaining informal care networks under increasing strain
- Ways of monitoring and detecting compromised outcomes of care
- Bereavement support responsive to increasing loss and grief
The report also concluded that it is essential that people affected by serious illness can continue to contribute to the palliative care response to COVID-19.
The research team:
- Halle Johnson, Lisa Jane Brighton, Irene J Higginson, Catherine J Evans
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London
- Margaret Ogden, Rashmi Kumar
Cicely Saunders Institute Patient & Public Involvement Group, King’s College London
- Joseph Clark
Wolfson Palliative Care Research Centre, University of Hull
- Helen Roberts
Institute for Clinical and Applied Health Research, University of Hull
- Lucy Pocock
Centre for Academic Primary Care, University of Bristol
- Clare Gardiner
Division of Nursing & Midwifery, Health Sciences School, The University of Sheffield