Family experiences of Long Covid
Credits
Cervantée Wild
Cervantée is an interdisciplinary health researcher interested in improving health services and systems for children, young people and their families. She works alongside clinicians in the intersection between clinical and public health to prioritise participant voices in service improvement and systems change. Cervantée was the lead researcher for the project and conducted interviews, analysed the data and wrote topic summaries for this project.
Alice MacLean
Alice specialises in qualitative research but also has experience of conducting systematic reviews of quantitative evidence and has been involved in the development and evaluation of behaviour change interventions delivered in professional sports settings and secure institutions. She helped to conduct the interviews, analyse the data and write the topic summaries for this project.
Zoë Skea
Zoë's portfolio of research involves sociologically informed investigations of stakeholders’ experiences of healthcare and of health services research. Zoë has particular interest and extensive expertise in using qualitative approaches to investigate patients’ perspectives of their care and treatment and also clinician – patient relations. She helped to conduct the interviews, analyse the data and write the topic summaries for this project.
Sarah Nettleton
Sarah’s substantive research projects have focused on topics such as recovery from drug dependency, running, unexplained illness, diagnosis and more recently architecture and health and social care. What unites her projects is a conceptual focus on embodiment, everyday life and the negotiated nature of formal and informal knowledge. She helped to conduct the interviews for this project.
Kate Hunt
Kate’s research has focused on the development and evaluation of public health interventions and policy. Covid-related research includes the impact of the early stages of the pandemic on gambling behaviours amongst sports bettors and young people, the experience and impacts of Long Covid, people's attitudes to vaccination, and the management and mitigation of risks of infection at sporting mega events. She helped to conduct the interviews, analyse the data and write the topic summaries for this project.
Sasha Lewis-Jackson
Sasha joined the Medical Sociology & Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford as an Ann McPherson Research Fellow in 2021. She helped to conduct the interviews, analyse the data and write the topic summaries for this project and provided research assistance with written materials and administrative tasks for this project. Sasha and Professor Sue Ziebland co-authored the blog “Long Covid, like most chronic illness, is having a dramatic effect on family life, schooling, and relationships”
Acknowledgements
We would like to thank all our participants who generously provided their time and experience to make this website possible. We appreciate the time that people with Long Covid have generously given to share their experiences, particularly as many were still feeling very unwell at the time of the interviews. We would like to thank the advisory panel members for their input into the project.
We would like to thank Cervantée Wild, Sue Ziebland, Zoë Skea, Alice MacLean, Kate Hunt, Anna Dowrick, Sasha Lewis-Jackson, Kaveri Qureshi, Louise Locock and Carol Dumelow for their involvement in writing and buddying topic summaries.
We would like to acknowledge the following people and organisations for their support with a range of activities including recruitment, translation, transcription, administrative support and contribution to the overall success of the project:
Heather Munro, Carol Dumelow, Bella Eacott, Ashley Brown, Catriona Connell, Fiona Mercer, Zander Simpson, Sabrina Keating, Shareen Akhtar, Linda Pitts, Gillian Bryant, Tina Coletta, Sophie Martin
Advisory Panel
Sandra Edwards: Co-founder of LongCovidSOS
Helen Lunt-Davies: Member of LongCovidSOS
Sammie McFarland: CEO & Founder, Long Covid Kids
Mahabuba Rahman: Patient and Public Involvement (PPI) representative
Milembe Wilkinson: PPI representative
Heather Payne: Consultant Paediatrician & Senior Medical Officer for Maternal & Child Health Welsh Government
Karl Atkin: Medical Sociologist, University of York
Andrew Carson-Stevens: GP & Health Services Researcher, Cardiff University
Julie Darbyshire: Critical Care Researcher & Programme Manager, Kadoorie Centre, University of Oxford)
Sophie Bennett: Research Associate, UCL Great Ormond Street Institute of Child Health
Bertha Ochieng: Professor of integrated health and social care, De Montfort University
Jacqui Morris: Physiotherapist & Rehabilitation Researcher
Victoria Welsh: GP & Research Fellow, Principal Investigator on SPLaT-19 study
Catherine Peters: Operations Manager, Performing Medicine
Understanding Long Covid in Families research group:
Sue Ziebland (University of Oxford)
Cervantée Wild (University of Oxford)
Anna Dowrick (University of Oxford)
Tanvi Rai (University of Oxford)
Charlotte Albury (University of Oxford)
Madeleine Tremblett (University of Oxford)
Ruth Sanders (University of Oxford)
Elizabeth Woolliams (University of Oxford)
Sasha Lewis-Jackson (University of Oxford)
Kristy Ravenhall (University of Oxford)
Vanessa Eade (University of Oxford)
Zoë Skea (University of Aberdeen)
Sarah Nettleton (University of York)
Alice MacLean (University of Stirling)
Esther Crawley (University of Bristol)
Louise Locock (University of Aberdeen)
Kate Hunt (University of Stirling)
Kaveri Qureshi (University of Edinburgh)
Jenny Douglas (Open University)
Mahabuba Rahman (PPI representative)
Milembe Wilkinson (PPI representative)
Performing Medicine
Grant holders:
Professor Sue Ziebland, University of Oxford (Principal Investigator)
Dr Helen Salisbury, University of Oxford
Ms Ruth Sanders, University of Oxford
Dr Tanvi Rai, University of Oxford
Dr Anna Dowrick, University of Oxford
Dr Cervantée Wild University of Oxford
Dr Charlotte Albury, University of Oxford
Mrs Mahabuba Rahman, PPI representative
Mrs Milembe Wilkinson, PPI representative
Professor Louise Locock, University of Aberdeen
Professor Kate Hunt, University of Stirling
Professor Esther Crawley, University of Bristol
Dr Kaveri Qureshi, University of Edinburgh
Dr Jenny Douglas, Open University
Supported by:
This project is funded by the National Institute for Health and Care Research (NIHR) under ‘Understanding and using family experiences of managing long Covid to support self-care and timely access to services’ (Grant Reference Number COV-LT2-0005). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
It is a collaboration between the Medical Sociology and Health Experiences Research Group at the University of Oxford, the University of Edinburgh, the Open University, the University of Stirling, the University of Aberdeen and the University of Bristol.
One interview included was conducted by Anna Dowrick from an allied study, ‘Diversity in Experiences of Covid-19’ study is funded by UKRI ESRC (reference ES/V016032/1).