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Covid Made Long

UK-wide study explores how Covid is impacting young people (aged 15-25) over time. We are investigating how Covid experiences, including Long Covid, intersect with health, wellbeing, inequalities, and futures.

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Research

Covid Made Long is an UK-wide research project exploring how Covid is impacting young people's lives in the long-term, focusing on those aged 15-25. We are exploring how experiences of Covid, including Long Covid, intersect with health, wellbeing, inequalities, and futures.

Our study also aims to understand and improve the social support and care that is available for young people. A particular focus of our study is understanding how the effects of Covid might make young people's lives more uncertain or precarious.

This project is funded by the National Institutes for Health and Care Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NIHR.

Who we are

We are a multi-disciplinary team with expertise in sociology, anthropology, science and technology studies, youth studies, public health, and qualitative methods. 

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Research FAQs
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Here you will find some questions you might have about ‘Covid Made Long’. If you have any further questions please don’t hesitate to get in touch with us at covidmadelong@lshtm.ac.uk.

What’s behind the title? 

The study is based around the idea of 'Covid Made Long' because we are interested in how Covid is impacting young people's lives over time, and is still affecting their presents and futures.

Long Covid is of particular interest because of how it alters young people’s lives at a time when they are making important life transitions. However, we are also interested in the ways covid affects young people’s health and wellbeing beyond Long Covid and lockdown. We are studying how Covid has changed care, welfare, and state infrastructures around communities, and the futures that now seem possible or not for young people aged 15-25.

Why 'covid' rather than 'COVID'? 

We deliberately chose the lowercase ‘covid’ to symbolise a departure from the traditional way of presenting the term. Firstly, we want to recognise that covid is an intense topic for many people to speak about, and we hope that making it lowercase feels less intense (like shouting), and makes the project feel more approachable.

But there is also another reason for the shift. This unconventional styling is intended to de-emphasise the way 'COVID' (and 'long COVID') is only seen as legitimate through clinical diagnosis and medical hierarchy. Rather, we want to create an atmosphere that encourages open dialogue and recognition of the diverse experiences people have had during this challenging period, which we are calling ‘covid made long’. This subtle linguistic shift reflects our commitment to inclusivity, acknowledging the varied ways individuals and communities have been impacted by the ongoing global health situation.

Who and what is involved?  

In partnership with young people themselves, we are interviewing 80 people (ages 15-25) and people in their social networks. We will follow up with some young people 6-9 months later to hear how their stories have developed. We aim to learn from young people who are experiencing different forms of precarity. We will combine interviews with creative participatory methods, involving young people throughout. 

This project is delivered in partnership with community organisations, including Long Covid Kids and Long Covid Support, as well as creative partner PositiveNegatives. The research aims to produce materials for use in peer-based and social support interventions as well as for use in training, advocacy, and policy.

Why now?

The UK has adopted a "living with" Covid-19 approach, but Long Covid and the long-term effects of Covid are growing concerns, making futures feel more uncertain. We need to understand how young people cope with the long-term and prolonged effects of Covid, shaped by social and economic challenges.

Our project examines covid not only as an illness (Long Covid), but also as a something that has lasting social and material impacts and is entangled with broader social and everyday life.

Our project, guided by young people, will create resources for training, advocacy, and social support. We aim to enhance how community organisations assist young people living with illness in uncertain conditions.

Why precarity? 

The pandemic has revealed how illness magnifies existing social and economic inequalities and equally how inequalities can magnify illness.

Our focus on ‘precarity’ means we are interested in how people’s lives are made more uncertain or less stable, when the right resources and types of support aren’t available. We are interested in how Covid has affected the types of support available and what times, places, or life events now feel safe or precarious.

We are aware that some people’s situations are more precarious than others because of material and social inequalities. We are interested in how Covid has affected different people’s experiences of different types of inequality, and see inequality as something intersectional – where people have different mixtures of inequality and privilege. In particular, we want to hear how young people think about, define, understand, and cope with inequalities and precarious lives, and how they have been affected by Covid. 

Who funds the research? 

This project is funded by the National Institutes for Health and Care Research (NIHR) with the study reference number 135315. The views expressed are those of the author(s) and not necessarily those of the NIHR.

Who has granted ethical approval for the research? 

This project has been approved by the London School of Hygiene and Tropical Medicine’s Observational Research Ethics Committee, with the reference number 28634.

How do I get involved with this research?

There are different ways for young people aged 15-25 to get involved. One way is to participate in an interview. All interviews are anonymised and participants will be given a £20 voucher to say thank you. If you are interested, you can contact covidmadelong@lshtm.ac.uk for more information. Young people can also get involved by participating in an advisory consultation or creative workshop. Again, if you are interested, let us know. 

What is covered in an interview?

The interview will take approximately one hour. We ask young people about their life experiences over the last few years, what Covid means to them, and how Covid has affected their experiences of inequality, support networks, and feelings about the future

How are young people involved in shaping this research?

We are committed to involving young people in the design and implementation of our project. We regularly conduct consultations and workshops to give young people roles in shaping the research.

So far, young people have supported us to:

  • Develop the topics to cover during interviews
  • Think about providing different ways for young people to share their stories

We are developing a team of peer researchers who will help us co-produce the research project. 

Team

Our team is an evolving collaboration between academics at LSHTM and Imperial, young people, organisations that work with young people (including Long Covid Kids), and creative partner PositiveNegatives.

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Profiles List
Prof Tim Rhodes

Tim
Rhodes

Professor of Public Health Sociology

Tim Rhodes uses qualitative interview methods to explore the lived experiences of health. He works with interview narratives as a means of giving voice to how health and illness is experienced, especially in situations of social constraint or vulnerability. He has worked mostly with people who use drugs, people living with HIV, and young people. He has also been doing interview research on experiences of Long Covid since 2020. In addition, he conducts a programme of qualitative research investigating ‘evidence-making’ in science, including in relation to epidemics and outbreaks. He works at LSHTM as a Professor of Public Health Sociology. 

Kari Lancaster

Kari Lancaster

Professor in Sociology

Kari Lancaster is Professor in Sociology and University Research Leader – Health, Science and Planetary Change at Goldsmiths University of London, and holds an honorary appointment at LSHTM. Kari is a qualitative social researcher and Science and Technology Studies (STS) scholar working in health, with a focus on Covid-19, hepatitis C, HIV, drug use and drug policy. She works closely in partnership with clinicians, policy makers, community organisations and patient groups (including through participatory approaches). Her programme of work investigates evidence-making practices, viral elimination, and outbreak science in the governance of health. Kari has been undertaking qualitative research exploring experiences of Long COVID recovery and care since 2020.  

Helen Ward

Clinical Professor / NIHR Senior Investigator

Helen Ward is a Clinical Professor of Public Health at Imperial College and NIHR Senior Investigator, with three decades of experience in research, education and applied public health. Currently leading on the implementation of the REACT study, and directing the Patient Experience Research Centre at Imperial. Helen has also developed pilot qualitative work, linked to the REACT study, among young people with Long Covid aged 18-34, and is involved in longitudinal clinical research among young people and children affected by Covid-19.

Sammie McFarland

Sammie McFarland

health and well-being professional

Sammie McFarland is a dedicated health and well-being professional with a diverse career, from early education to maternity nursing and health coaching. Her passion led to the establishment of her own business empowering women. Sammie's remarkable accolades include the 2023 Coronation Champion title from the Royal Volunteering Service. Despite her family's battle with Long Covid, in 2020 she founded Long Covid Kids, a groundbreaking UK-based international charity for children with Long Covid, offering support and early awareness. The charity's advocacy has raised awareness, initiated pediatric research, and produced valuable resources for affected families. Sammie enjoys being in nature and is a committed cold water swimmer.

Hannah Cowan

Hannah Cowan

researcher

Hannah Cowan is a researcher interested in social inequalities, activism, and health. She has worked with young people for the past four years on the Utopia Now! project, which looks to understand young people's hopes and fears for the future, and bring them into conversation with researchers to help change the direction of medical research. She is passionate about bringing communities who experience injustice and researchers together to help shape futures and find everyday ways of resisting the reproduction of inequalities. Outside of work she enjoys being outdoors, music, and watching rubbish TV.

Zaira Clarke

Zaira Clarke

youth worker / facilitator

Zaira Clarke is a youth worker and facilitator based in South London. She has been working with young people for 8 years, delivering programmes focusing on mental health, social action and mentoring. She is particularly interested in participatory approaches and collaborating with young people to make sure that they have a say in the decisions that affect their lives. Outside of work she enjoys art, volunteering with older neighbours in her community, and exploring London (and beyond) by bike.

Ms Praveena Fernes

Praveena
Fernes

Research Assistant

Praveena K. Fernes studied political ecology at SOAS University of London and now public health and policy at the LSHTM. Her current PhD project explores the place-based experiences of people who are homeless and seek drug and alcohol services in East London, with a special focus on relations of care. Before this, she studied food landscapes in New Orleans, US and curated an object storytelling project with residents in a dam-affected wetlands community in Rasi Salai, Thailand. Her work strives to advance health equity through transdisciplinary research-to-action partnerships and democratizing the kinds of stories being heard. Praveena is an avid bread baker, hiker, and chai enthusiast.

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Advisory groups

Our Project Advisory Group

Our project is driven by a diverse Project Advisory Group, comprised of experts in various fields, including Young People's Services, Long Covid, and Social Science. This group also features active participation from young people themselves, ensuring their perspectives are at the forefront of our project's development.

Peer Advisors and Researchers

In addition to our Project Advisory Group, we are establishing a network of young people with a variety of lived experiences who offer valuable insights, ideas, and feedback throughout the project's lifecycle. As the project develops we will also involve some young people as co-researchers. 

Partners

The project produces multiple resources for use in training, advocacy, and intervention. This is achieved through collaboration with young people, community organisations (including Long Covid Kids and Long Covid Support), and our creative partner PositiveNegatives.

Resources
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As our project continues to develop, we'll be regularly updating this space with valuable resources. For now, we recommend exploring the Long Covid Kids website for essential background information.

Get involved
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There are different ways for young people to get involved, including advising us on the project through a consultation, and taking part in an interview.

In order to take part you will need to be a young person living in the UK between the ages of 15-25. We are also particularly interested in hearing from young people who feel like they have experienced some form of inequality or injustice (as defined by you).

One way is to participate in an interview, where we will ask you about how your experiences of covid, including Long Covid, intersect with health, wellbeing, inequalities, and futures. All interviews are anonymised and participants will be given a £20 voucher to say thank you. 

Learn more about what to expect in an interview.

If you are interested, you can contact covidmadelong@lshtm.ac.uk for more information.

Young people can also get involved by participating in an advisory consultation or through sharing their stories creatively. Again, if you are interested, let us know. 

Watch the video below to find out more.

Support
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If you are a young person and you could benefit from additional support, below are a list of free support services available to you in the UK:

Childline - is a free 24-hour counselling service for children and young people up to 19 years old. You can get help and advice about a wide range of issues, call Childline on 0800 1111, talk to a counsellor online, send Childline an email or post on the message boards. 

The Mix - if you are under 25, you can contact The Mix for free by phone, text, email or via webchat. Use their phone counselling service or get more information on support services you might need, for all areas of life. Visit their website www.themix.org.uk, or text ‘THEMIX’ to 85258.

Papyrus - confidential, crisis support for suicidal young people aged 35 and below. For help and suicide prevention advice (24/7) call 0800 068 4141, text 07860039967 or email pat@papyrus-uk.org.

Long Covid Kids – Offer peer to peer support services for young people aged 6 – 17, and signposting for families of children and young people living with Long Covid. 

Long Covid Support - Long Covid Support is a peer support and advocacy group for people living with Long Covid. For information and support, see ‘support’ on the Long Covid Support website. People with Long Covid, and those who personally care for them, are welcome to join the private online peer-support group on Facebook, the Long Covid Support Group.

If you are an adult and you are worried about a child or young person:

NSPCC helpline - You can contact the NSPCC Helpline by calling 0808 800 5000, emailing help@NSPCC.org.uk or completing our report abuse online form.