Sources of information and support for Long Covid

In this section we cover how parents and young people found information about Long Covid, what helped, and where there appeared to be gaps in support.

We include:

  • Online support groups
  • Family, friends, neighbours and colleagues
  • Information, research, and official sources
  • Information overload and anxiety
  • Gaps in information and support

Online support groups

Online support groups and Facebook sites set up by people who had Long Covid were described as a real lifeline by many of the parents we talked to. Particularly for those who were unwell before Long Covid was widely recognised, it was reassuring to learn that they were not alone.

Michelle recognised that what they had was Long Covid when they searched online.

Hearing about other people’s experiences, the ‘weird’ symptoms and sharing ideas provided practical and emotional support. It also helped to reassure Beth and others that they were ‘not crazy.’

Claire set up a flourishing online support group and campaigns for rehabilitation, research, and recognition for Long Covid.

While parents of children with Long Covid were relieved to share ideas with anyone, some really appreciated the opportunity for a more focussed connection with those with similar aged children.

Emma B joined a support group for parents and had linked up her daughter with another for children of similar age.

Some of the young people we talked to had joined online support groups, often encouraged by their parents.

Rosie joined a group with her dad and appreciated the connections with others who ‘properly understand.’

The online support groups were not used by all the young people. For example, Deidre said that her daughter was so far not interested in joining a group, and Evie, who is 15 years old, said that her mum found the online sites more helpful than she did.

Written resources were also available through some of these groups. Emma B found the written guides produced by Long Covid Kids useful and was pleased to be able to share them with others, including schools. Sasha told us she had contacted specialist doctors she had found through a Facebook Long Covid support group.

Family, friends, neighbours and colleagues

Families who are trying to cope with Long Covid often really appreciated the care and support received from other family members, including children and young people who remained relatively well. We also heard about friends and neighbours who had pitched in to help in a variety of ways, including by taking other children out for the day or involving them in treats. Parents who were managing their own, or a child’s, Long Covid were often very worried about the effect on the rest of the family.

Teamwork in a loving and supportive family is helping Sharifa’s family to cope.

Claire explained that her friends and neighbours had been really helpful and that she ‘couldn’t have got through it’ without them. Her (then) 15-year-old son and her other two children have helped to keep the household going, in between their own bouts of illness and relapse.

Deidre’s friends and family have been an enormous help, including taking her other children for days out.

For more about this, see ‘Changes to Care Roles.’

Information, research and official sources

The existence of Long Covid was initially recognised when people who were still unwell weeks after infection with Covid-19 connected with each other online. By 2021, it was a much more widely recognised problem, with official information and media articles available and Long Covid research underway.

Some of the people we talked to, including Eleanor, got information from official sources, media, and people’s experiences – and said that they found it reassuring and more believable when the information from different sources overlapped.

Emma B said she looked at everything she could find about Long Covid, trying to work out what would be helpful to her daughter.

Although people often told us that they ‘obviously’ looked online for information, several parents said that they were very careful about the sources of information they used. Danie was very cautious about how she used the internet. She saw the information from the hospital as ‘comprehensive’ and said that if she needed to know more she would ask, or ‘Google’ the question. Michelle asked advice from her GP about any information she found online about Long Covid.

Sasha, Lachlan, and Emma A looked for information in research journals that they could access online, although Emma A was careful (‘I daren’t tell!’) about raising alternative views when talking to doctors about her child’s Long Covid.

Michael, a former medical student, had benefitted from meeting other people with Long Covid when he took part in a research study and thinks social media groups can be helpful.

Information overload and anxiety

It is widely recognised that reading about health issues online can have a downside, for example if people become too drawn into looking at content that makes them anxious, which Maryam and Colin experienced. Rajash warned that online information can increase hypochondria. Hearing about others who remained very unwell or had developed new ongoing health problems many months later made Golda, Zubair, and Emma A feel sad and disheartened.

Colin found that looking at the internet increased his worries about his child’s Long Covid.

We talked to some people who said that they were themselves just too tired, experiencing brain fog which made it difficult to concentrate, or were too busy to search for support or information. In some communities, digital inclusion was more of a challenge.

Zubair reminded us that not everyone has internet access, especially in his community.

Comparing notes with others could be helpful, but comparisons were not always reassuring or supportive. Lucy explained that she felt less entitled to care having heard what others were going through.

When Lucy A hears about other people who are doing worse with their Long Covid, it sometimes makes her feel that she does not deserve the care she is getting.

Gaps in information and support

Information was not always available or easy to find. Parents pointed out that much of the guidance on Long Covid was written about adults, not children and young people.

Sara notes that much of the guidance is quite adult-oriented and hard to translate for a child.

The lack of understanding about how Long Covid could affect children had consequences for some parents, like Francesca, whose work colleagues did not really understand. She noted the contrast between online support groups and ‘the rest of the world.’ Deidre said that it would be great to see some good news stories about Long Covid recovery.

Francesca felt that her work colleagues did not want to face the reality of Long Covid in young people.

Finally, some of the people we talked to mentioned the gap in information and support for the partners and siblings of people with Long Covid. Although people who are relatively healthy might be reluctant to claim support for themselves, some wondered whether a more family- or household-focussed approach might be a better way to handle the effects of Long Covid.

Lindsey, whose partner and child both have Long Covid, wonders if a support group for family members is needed.

Consultations with GPs about Long Covid

Like others with lasting symptoms after Covid, young people had consulted with their GPs in the hope of some advice, tests, treatment, or referrals to...