Palliative care in a pandemic: listening to patients

26th June 2020

CSI researchers have carried out a rapid virtual stakeholder consultation with people affected by serious illness to understand their experiences and concerns and establish priorities for palliative care research during the COVID-19 pandemic.

The team included researchers, clinicians and members of the public from research groups at King’s College London, University of Sheffield, University of Hull and University of Bristol. Using virtual methods (online, email and phone) the team consulted members of patient and public involvement networks across these 4 palliative care research groups in England, between 16 March and 15 April 2020. The networks include individuals living with serious illness, and their family members and/or informal carers.

Their concerns centre on 4 key areas – reduced professional support, strains on informal care networks, risk of reduced quality of care, and increased loss, grief and bereavement.

Researchers conclude that new and innovative methods for accessing palliative care are vital to ensure that patients receive timely, professional support when there is increased demand; that there is support for informal care networks to enable them to withstand additional strain; and that high quality of care, including bereavement support, is maintained.

2 page summary

Read the full report here: https://doi.org/10.18742/pub01-034

Johnson HJ, Brighton LJ, Clark J, Roberts H, Pocock L, Ogden M, Kumar R, Gardiner C, Higginson IJ, Evans CJ (2020). Experiences, concerns, and priorities for palliative care research during the COVID-19 pandemic: A rapid virtual stakeholder consultation with people affected by serious illness in England. Cicely Saunders Institute, King’s College London. https://doi.org/10.18742/pub01-034