Lived Experience of Long Covid Resources
The Patient Experience Network (PEN) were delighted to announce a day of drop-in sessions sharing ‘Lived Experience of Long-COVID’ hosted online on Tuesday 25th July alongside NHS England.
Throughout the day there were 3 x 1.5 hour online drop-in sessions. All resources, presentations and recordings from those sessions are available here.
Session 1 - Insights from Health Inequalities Research for Long-COVID. Hosted by: Nisreen Alwan (University of Southampton) and Sarah Baz (University of York) on behalf of the Long Covid and Health Inequalities Academic Group (part of the Qualitative Long Covid Network)
Journal article: ‘I don't know what to do or where to go’. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK. Health Expectations.
Journal article: ‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID. Sociology of Health & Illness. A guide to Long Covid and mental health
A guide to Long Covid and mental health
Policy brief: identifying mental health support gaps for people living with Long COVID
CONVALECENCE project website
Study Website
Study Protocol
Journal article: Towards evidence-based and inclusive models of peer support for long covid Soc Sc & Medicine
Study protocol: LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK. BMJ Open.
Long Covid active case finding: a co-produced community-based pilot within the STIMULATE-ICP study. PLOS ONE
Defining usual care and examining inequalities in Long Covid support: protocol for a mixed-methods study. PLOS ONE
STIMULATE website – Long Covid Inequalities
Long COVID stigma may encourage people to hide the condition
Long Covid stigma: Estimating burden and validating scale in a UK-based sample | PLOS ONE
My cruel teacher – Long Covid | Nisreen Alwan | TEDxSouthamptonUniversity
Session 3: How Long-COVID Impacts Families: Amplifying the Voices of Children and Young People. Hosted by: Cervantée Wild, University of Oxford) and Alice MacLean, University of Stirling
Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy
Family Experiences of Long Covid
Long COVID − Integrated Approaches to Chronic Disease Management?
Voices of Children with Long Covid Research by Middlesex University
Session 3 – Presentations Available Here
Watch Session 3 Here:
Session 4: Enablers and Barriers to Accessing NHS Long-COVID Care: A View from the Public, Patients and Advocacy. Hosted by: Ipsos/NHS England
Session 4 – Presentations Available Here
Watch Session 4 Here:
