Family experiences of Long Covid

Overview

This study is one of four studies on Covid-19 in the UK published on the HEXI website:

Experiences of Covid-19 and intensive care
Covid-19 in the community
Long Covid in adults
Family experiences of Long Covid

Covid-19 is an infectious disease caused by a virus known as SARS-CoV-2. Although Covid-19 is the official name of the viral infection, we use the ‘Covid’ throughout for purposes of readability.

Covid can affect anyone, including children. In spring and summer 2020, reports began to appear in the media about people who were experiencing much longer lasting symptoms after catching Covid. People of all ages have been affected by persistent symptoms. We use the term ‘Long Covid’ for these experiences, although other terms are sometimes used.

Family experiences of Long Covid - site preview

SHOW TEXT VERSION

PRINT TRANSCRIPT

Rosie

Like my life has sort of fallen apart a little bit to how it used to be, so I can’t do as much as I used to be able to do because of the symptoms and just feeling exhausted all the time.

Ben

You're going to be crashing from day-to-day, you're going to be having a good day and a bad day, and a good day and a bad day, or you have bad days in a row

Lucy

Just be very patient because it’s been a year and a half and I never thought it would, I thought it would be over in like two weeks or something. I didn't think it would take this long but it has.

Ada

And that’s just resorted to me pretty much just do my bare essentials. I pick and drop my kids. I try to spend the time I can with them. And outside of that, I don’t do anything which in itself can lead to depression and, and anxiety and an awful place to be in. It’s not very nice, and it’s affected my relationship with my children. And I would say, I don’t know if it’s, mum, mum guilt.

Gracie & Claire

…yeah, always been believed right from the outset which was the best thing. And yeah, she just listens. I think it’s having somebody to listen to how you know Gracie is, how I’m feeling, and to be fair, out of all of these professionals that we’ve seen, she’s the only one that’s ever-taken time to ask how I am.

Danie

But at the same time as all of this you can see inflation going up, just generally the cost of living so that's what we're kind of having to pay almost like a month at a time and just seeing what we're doing.

Amira

Some of the teachers, but like some of the teachers aren’t, because they're like they're telling my mum they're going to fine her if I don’t come back to school soon.

Yeah, she’d got like a letter from the GP saying that like there was something wrong with me and like I've been sick and stuff, but they still don’t really understand.

Zubair

But I think people out there, you know whether it’s an employer, you know a medical professional, or anybody, they need to take this seriously that the Long Covid does exist and you know you’re just not making it up.

Christian

My advice would be try and manage your life in a way that you strip away all non-essentials, whether that means social interactions or type of work activities. You know, you've really got to work out what is most important to you and how to prioritise that.

Colin

And one of, one of the things about resilience and emotional well-being, is doing things for other people is hugely important, you know, protective of mental health problems, so if she feels that she’s, she’s contributing something to the, to the wider body of knowledge or to helping train people, then that’s a good thing.

Living with Long Covid can have a big impact on family life. It has created challenges for children and young people affected by Long Covid, parents caring for them, and for parents themselves affected by Long Covid.

In this section, you can hear directly from people who have had a wide range of debilitating and sometimes confusing symptoms and the people who have helped to care for them. These are people who know how Long Covid affects day-to-day life. Here they talk about things they have found difficult and some of the things that have helped. This includes:

Young people talking about their experiences of Long Covid
Parents with Long Covid talking about how the condition affects family life
Parents of young people living with Long Covid

You can also learn about the specific experiences of adults living with Long Covid.

The Family Experiences of Long Covid site is based on 73 interviews from across the UK, conducted in 2021 with children, young people and parents who have been affected by Long Covid. We reviewed what everyone said and then wrote about each topic in 22 sections, which are listed in the sidebar. Each of these topics include clips chosen from the interviews so that you can hear directly from the people we talked to.

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.

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.

Publication date: March 2023