Long Covid, like most chronic illness, is having a dramatic effect on family life, schooling, and relationships
Sasha Lewis-Jackson, Sue Ziebland
8 September 2022
COVID-19 Health experiences Patient experience
As a chronic illness long Covid can have a dramatic effect on individual and family life, schooling, and relationships. Debilitating symptoms may last months, or years. Our team in the Medical Sociology & Health Experiences Research Group (MS&HERG) have been finding out how family life has been transformed by having, or caring for someone with, long Covid.
As a chronic illness long Covid can have a dramatic effect on individual and family life, schooling, and relationships. Debilitating symptoms may last months, or years. Our team in the Medical Sociology & Health Experiences Research Group (MS&HERG) have been finding out how family life has been transformed by having, or caring for someone with, long Covid. The NIHR funded research (https://www.nihr.ac.uk/) will contribute to a new section on Healthtalk.org, where it will join three other Covid collections. In advance of the main outputs from the study, here we draw attention to how long Covid is affecting family life, schooling, and relationships, with illustrative extracts from our qualitative interviews.
Parental roles have been transformed and dismantled due to long Covid. The responsibility of caring for children and keeping everyone safe could feel scary, as this mother of three young children explained:
“It scared me. I said to my husband, I’ve got three little ones at home and, you know, he’s going to work probably thinking, “Are they safe with her today? Is she going to be all right?” [laughs] Yeah, no, he’s right to but then the anxiety starts kicking in because I think, before I do anything stupid get the kids out the kitchen and I literally, got to a point where I was like, I’m not having the kids in the kitchen. Even when I’m not cooking, even when no oven is on, no nothing is on, nothing is boiling, my anxiety would kick in. I get so anxious, I’d be like, no. And I’d look around thinking, literally, like cooker’s off, hob’s off, oven’s off, kettle’s off, everything is off. Right. And then I’m like, what else could they hurt themselves, what have I not done? I then start looking for things I might have got wrong because it was happening that often.”
Behind these immediate safety concerns there were subtle yet corrosive effects on family relationships and expectations. These were particularly saddening to parents who wondered whether their young children would remember when their parent had been healthy, and whether the changed roles would have a long-term effect on their relationships.
“It’s definitely affected the relationship with me. Before that, I was poorly, I did everything for them. And just little things like if they need somebody in the night, they don’t shout, ‘mummy’ anymore, they shout ‘daddy’. I used to do every school run and everything that they needed, I, I did. And so, they don’t rely on me the same, which is really sad. And they always say, ‘We could do this if mummy wasn’t poorly’. ‘If mummy wasn’t poorly’.
And I was so numb to the fact that I weren’t there with my children and it’s only as I’ve got on some heart medication that’s kind of helped me brain to regain some cognition that I think, ‘Oh my God, where did they even go for the Easter holidays? Who had them.’ Whereas normally, I, I would organise everything like if they went to my mum’s or me sisters. I think I was so out of their lives.
They’ve they did really really well. I’m really proud of ‘em. But surely it will—my little girl is really clinging to me, really really clingy. And my little boy seems to have gone distant. That, that’s my observation of it.”
Quality time as a family unit has been uprooted by the demands of managing long Covid symptoms. Sadly, time for previous priorities has diminished as free time and disposable income has been re-routed to dedicate care to the ill family member. This has left parents grappling with guilt over how this affected their other children and concerns that opportunities to make happy memories are being lost.
For single parents, navigating illness, parenting and employment has become particularly stressful as they attempt to dedicate time to all. We spoke to families where one parent had an extended stay in hospital, or died due to Covid, which was of course devastating for everyone.
These sudden alterations to circumstances have significantly impacted family finances with cutbacks being made to accommodate loss of employment by one or both parents. Annual or unpaid leave has been used to help fulfil caring responsibilities rather than for spending quality time as a family. One mother explained how this left them little time to spend together:
“I guess it’s been tricky because she’s been off school—so any time off, she obviously needs a parent to look after her, so then it... then it impacts on your...on...on my work or my husband’s work; we’ve had to kind of share the time off. So my boss has been pretty flexible, I do not have a job where I can work from home, [chuckles]—so that’s been quite difficult to manage. She’s been very flexible in trying to allow me to work from home at certain times when there’s been tasks that I can do at home. That’s not always an option, so my husband has had to take annual leave in order to look after our daughter, which then, that impacts on us being able to spend time as a family.”
This quote and many similar narratives are a stark reminder of how long Covid has fractured family relationships. For some, disposable income has been re-allocated to private healthcare appointments or seeking overseas clinical trials and treatments, although these are financially inaccessible for most people.
Schooling has become distressing for children and parents who are trying to navigate the periodic and debilitating nature of long Covid, while attempting to engage in structured schooling. For children with brain fog, concentration is very challenging. Lapses in memory and difficulty being in front of the screen have impacted their ability to engage and has made it impossible to keep up with schooling.
Physical symptoms have also disturbed children’s schooling as some have become wheelchair users or have been unable to get out of bed for days after any exertion. For some, adaptations to schedules, classrooms, and the introduction of livestreamed lessons have helped mitigate absences. But we also talked to parents who said they had been threatened with fines due to their child’s non- attendance at school. This became an unwelcome battle for parents who were already worried about their child’s health and the significant interruption to their education.
Long Covid also had detrimental effects on some young adults who had needed to return home from university to be cared for by their parents. Their newly acquired independence and life plans were derailed by long Covid, leaving uncertainty about their future.
Children with long Covid, or whose parents have long Covid, could find their carefree nature was eroded by the reality of their illness. The range of symptoms caused by long Covid have left some with conditions that need close monitoring, causing them to be hyper aware, cautious, and embarrassed by their symptoms. Children and young people who were active before long Covid told us that the prospect of pain, days in bed or even hospitalisation after activity often led to them opting out of social activities and clubs.
Children whose parents had long Covid said there had been major shifts in their relationships, especially when a dramatic decline in the parent’s health required support from their children. One mother said she was reliant on her 8-year-old son for help when she fainted, illustrating the raw reality and responsibility being placed on many children’s shoulders.
“Yeah, so after like the two weeks of having Covid and my husband could go back to work and we weren’t isolating the children were in the house sometimes with just me and I were laid on the settee a lot or in the bed a lot, just while he couldn't like my mum would pick them up from school and then my husband would come home. So, it were just a, a small period between me having some help and that my children were like needing a drink and things like that. So, I had to get up on this occasion and I fainted.
But at that time, my breathing were really, really bad as well and I were really really weak and frail. So, I’d like lost con—I’d fainted and I didn't regain consciousness and I could hear my son talking on the phone but my vision were really blurry. This were when I’d kind of come round and I was still on the floor and I can just remember I were really struggling to breathe and I could hear my dog was outside, barking. This was just my memories of it. I could hear my dog barking outside. I could hear my little boy on the phone, and he was saying, “My mummy is on the floor and she won’t wake up.” And then I’ve got a younger little girl and I can remember she were crying and then the next thing I can remember is my son was on the phone to my mum saying, “You need, you need to come Nana. Mummy’s really poorly.” And my family lived close by and they arrived before the ambulance came and I was still on the floor throughout it all.”
Written by Sasha Lewis-Jackson and Sue Ziebland
Dozens of further analyses and hundreds of interview extracts will be published on Healthtalk.org in December 2022 and January 2023. You can see an interim site from our sister study ‘Long Covid in Adults’ on healthtalk.org
This study is funded by the NIHR Long Covid programme (COV-LT2-0005) Grant holders: Sue Ziebland, Esther Crawley, Louise Locock, Kaveri Qureshi, Anna Dowrick, Charlotte Albury, Kate Hunt, Cervantée Wild, Ruth Sanders, Tanvi Rai, Mahabuba Rahman, Helen Salisbury, Milembe Wilkinson and Jenny Douglas. Researchers include Alice MacLean, Zoë Skea, Maddie Tremblett and Sarah Nettleton. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
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