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

Halle Johnson, Lisa Jane Brighton, Joseph Clark, Helen Roberts, Lucy Pocock, Margaret Ogden, Rashmi Kumar, Clare Gardiner, Irene J Higginson, Catherine Evans

Research output: Other contribution

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Abstract

The palliative care research community has responded quickly to COVID-19. However, the experiences, concerns and research priorities of people affected by serious illness and their families remain unknown. We conducted a rapid public consultation from March 16th to April 15th, 2020 to understand the emerging experiences, concerns and research priorities of people affected by serious illness, in relation to palliative care, during the COVID-19 pandemic.
Using virtual methods (online forum, email, telephone) we consulted members of patient and public involvement networks across four palliative care research groups in England. These networks include individuals living with serious illness, and their family members and/or informal carers. Responses were synthesised into categories by a team including people with clinical, academic and lived experience relevant to palliative care.
We received responses from 44 patient and public involvement contributors. Their concerns and research priorities centred around four key areas: 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.
Research priorities to innovate access to palliative care during a pandemic and beyond should address: ensuring timely professional support with increasing service demand; sustaining informal care networks under increasing strain; ways of monitoring and detecting compromised outcomes of care; and bereavement support responsive to increasing loss and grief. It is essential that, going forward, people affected by serious illness can continue to contribute to the palliative care response to COVID-19.
Original languageEnglish
PublisherKing's College London
Number of pages31
Place of PublicationLondon
DOIs
Publication statusPublished - Jun 2020

Keywords

  • COVID-19
  • pandemic

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