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Co-designing personalised self-management support for people living with long Covid: the LISTEN protocol

Heaton-Shrestha, Celayne, Torrens-Burton, Anna ORCID: https://orcid.org/0000-0002-2162-3739, Leggat, Fiona, Islam, Ishrat ORCID: https://orcid.org/0000-0003-1395-8173, Busse, Monica ORCID: https://orcid.org/0000-0002-5331-5909 and Jones, Fiona 2022. Co-designing personalised self-management support for people living with long Covid: the LISTEN protocol. PLoS ONE 17 (10) , e0274469. 10.1371/journal.pone.0274469

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Abstract

Background Long Covid is recognised as a complex condition characterised by multiple, interacting and fluctuating symptoms which impact everyday life in diverse ways. The extent of symptom clusters and variability supports interventions that can accommodate heterogeneity, such as personalised self-management support. This approach is also advocated by people living with long Covid and guidelines published by the UK’s National Institute for Health and Care Excellence. Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) is one of 15 research projects funded by the UK’s National Institute of Health Research long Covid research programme. LISTEN aims to work with people living with or recovered from long Covid to co-design self-management resources, and a training programme for rehabilitation practitioners to deliver personalised support. The intervention will focus on people not hospitalised for Covid. The protocol presented here details the co-design of the LISTEN intervention which, on completion, will be evaluated in a randomised controlled trial. Methods The study will utilise an Accelerated Experience-Based Co-Design approach, and involve 30 people from England and Wales with lived experience of long Covid, and 15 rehabilitation practitioners living with, or supporting people with, long Covid. Through online meetings, participants will share their stories of long Covid, their challenges and strategies to live better with or recover from long Covid, their priorities for self-management resources and the practitioner training andcreate, review and refine these resources and the training. Throughout, LISTEN will draw upon the UK standards of public involvement in research. Discussion If effective and cost-effective, the intervention will be available across the UK’s National Health Service. The first of its kind, this study could make a difference to the lives of people with long Covid. To ensure impact, we have developed strategies to involve people from diverse backgrounds and mitigate potential barriers to involvement.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Centre for Trials Research (CNTRR)
Prime Centre Wales (PRIME)
Publisher: Public Library of Science
ISSN: 1932-6203
Funders: NIHR
Date of First Compliant Deposit: 12 September 2022
Date of Acceptance: 26 August 2022
Last Modified: 11 May 2023 05:37
URI: https://orca.cardiff.ac.uk/id/eprint/152471

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