The COVID-19 Book Club
In June 2020 RCPCH began working with clinicians and young people to look at the voice and views of children and young people about being in lockdown. We set inclusion and exclusion criteria to identify a list of published studies.
Six young people aged 16-25 (Anisah, Ella, Emma, Michael, Owen and Phoebe) with a trainee (Emily) and RCPCH staff (Subhaan and Emma S) formed the COVID-19 Book Club. The club has been meeting for an hour each week to review these studies and identify key themes. They had training on how to read studies, use collaboration software and understand the NHS recovery plan approach. And, one club member, Michael, built some AI to scan the studies for key stats and help theme into different categories.
The Book Club wants to make sure that children and young people’s wishes, experiences and views around the impact of the pandemic are highlighted and understood, supporting the NHS to include their needs in recovery plans and winter planning.
Here's what they've produced:
- One live question and answer event - which they planned and delivered, with presentations from paediatricians and questions from young people, accompanied by themes that you can download below and a blog by a trainee paediatrician
- Three recovery priorities - which you can share with your managers, boards and lead decision makers
- Eight themes for winter planning - for consideration by NHS Trusts
- Eight research summaries - on these themes, drawing from the studies reviewed
Please think about how you can use their insight to inform your thinking about supporting the physical and mental health needs of children and young people, as we come out of lockdown and move into the recovery phase of COVID-19.
We'd love to hear how you use children and young people’s voice - email us on firstname.lastname@example.org and we'll share with the Book Club's young volunteers. And, if you want more information about this project, you can email us.
You can also read our summary of the key current evidence regarding COVID-19 in children and young people which is based on published and pre-print studies, and covering topics such as epidemiology. transmission, clinical features and at risk groups.
The Book Club's young volunteers spoke with paediatricians, medical directors, policy leads and national programme leads for child health to understand more about how to help Trusts and planning for the next six months.
They have three recovery priorities for urgent action by NHS Trusts and health boards:
- Have child and youth accessible, friendly and relevant information about accessing health services and staying safe through the pandemic
- Increase access to mental health services to support children and young people impacted by the pandemic
- Create the best virtual health experience possible thinking about access, confidentiality, rapport and holistic care
They created a poster on these three recovery plan priorities, explaining the problem, solutions and the impact on children and young people if resolved.
Winter planning themes
From the studies they reviewed, the Book Club identified eight themes for consideration by NHS Trusts for their winter planning and COVID-19 recovery plans:
- Increase access to children and young people’s mental health and emotional wellbeing support services from early intervention to specialist support referrals
- Increase child health support through education settings
- Provide skill development and aspirational opportunities within the NHS through volunteering/work experience to support with future employment worries
- Provide opportunities for children, young people and families to access peer support (virtually or in person) connected to their health experiences or conditions, rebuilding relationships with friends
- Ensure all health care staff have up to date local information about charities and organisations that can support family holistic needs - for example, rent issues, food insecurity, poverty, relationship breakdown
- Restart health conversations with patients with pre-existing health needs
- Create support, help and guidance for patients and families on having good virtual appointments, reinforce how they seek face to face help if needed and how to manage virtual living
- Improve how you share information during the pandemic about your services and the pandemic
As of 22 September, the group has read the following studies - representing more than 61,000 views!
- LockdownLowdown - what young people in Scotland are thinking about COVID-19 (PDF)
- How are you doing?
- Take the temperature
- Impact of COVID-19 on girls and young women
- Young people in lockdown
- Coronavirus and me
- Youth in lockdown (PDF)
- Coronavirus: impact on young people with mental health needs (PDF)
- Coronavirus and me
- A survey of the effects of lock-down due to corona-virus on students in primary and secondary schools (PDF) - a report by a Year 6 student
- Impact of lockdown on young people (PDF)
- The Oxford ARC study: achieving resilience during COVID-19 (PDF)
- Needs of young people through COVID (PDF)
- Our voices aren’t in lockdown
- Reimagining the future of paediatric care post-COVID-19 - a reflective report of rapid learning
Read on for the Book Club's research summaries on the eight themes.
Theme 1 - Mental health
Children and young people’s mental health has been impacted by COVID-19. Some have said that it has had a negative experience, from as young as 4 years, but others have said it has helped their mental health by being at home more, especially if they have a learning disability.
Not going to school has helped me in many ways: it gave me time to recover from being in poor mental health and gave me a break from all the hassle of school days.
Sixty five percent of young people surveyed in one report said that they were worried about their mental health, where as the government had reported only 20% of young people being worried. One young person shared about their panic attacks returning with help being via an online counselling session. For children in one of the reports, they reported that they generally felt cheerful, but some were now starting to say they felt more lonely. In one report, 83% of young people said that their mental health had worsened during COVID-19.
Overall, I think the internet is having a bigger effect on my mental health as apart from my family, it’s the only form of communication I have available. Before, I was always able to walk away from it, go out with friends and take my mind off the internet - but being at home, it’s one of the few things one can do.
Book Club request: Make sure there is support in recovery plans for children and young people’s mental health, in different places and at different levels of support, from having someone informally to talk to like a teacher or youth worker, good clear self support like with apps, through to specialist 1:1 counselling.
Theme 2 - Education
There has been a significant impact on education through the lockdown. We have picked up that there are some children and young people happy not to be in school as they get to spend more time with their family and not have to deal with being bullied. And, one report says that 17% of young people are not happy that exams have been cancelled, as it feels like they won’t get the end they had planned to their school life life with others feeling that everything they had worked for was now going to waste.
The fact the biggest year of my life has been completely cancelled has been difficult.
Some people talked about issues with access to online education because of not having a computer or sharing one device with lots of other people in their home or having faulty equipment. Young people said they feel that they are now further behind because of their disabilities due to online education, like having dyslexia and not having 1:1 support anymore.
Going back to school, college or university is also causing worries for some children and young people, about whether it is safe, what will happen with exams and if they will have to catch up all the work, as well as not being sure about going up to another year group or changing schools in September.
My GCSE results will not be reflective of what I actually could’ve got. Plus, I don’t want to be in a position where my results are considered less valuable because I didn’t earn them the proper way.
Also, they have shared about feeling that they have missed important events like trips, end of school proms and being with their friends. A key thing is that there hasn’t been the same help or support from every school to every child or young person, which has made some feel unhappy about the support they have received.
Book Club request: Make online learning as fair for all students as possible and remember to do regular check in phone calls with students who used to have 1:1 support or accessed wellbeing services in school Remember about the impact this will have on mental health and have more support ready when we go back.
Theme 3 - Employment
One positive for some children and young people has been that they have seen their parents more now they are working from home, so they feel closer to their parents. For 23% of young people/young adults in one survey, they shared that they have also been working as key workers through the pandemic so have experienced a different type of employment worry about staying safe at work whilst losing the support networks of their friends.
For other young people and young adults, they are really worried about cancelled exams and the impact that will have on them in the future when it comes to finding a job. There are worries about a lack of opportunities for young people to find employment when so many people are looking for work, with 69% of young people unemployed now feeling even more unsure about their future that they did before lockdown started. There is also an impact on a change in family circumstances affecting children and young people, where parents have stopped working due to COVID-19.
I usually have a weekly therapist, but mum lost her job because of the outbreak, and we can’t afford it anymore.
Book Club request: Recognise the under-25 years key workers and the role they have played during lockdown, and think about ways to support under-25s who are looking for jobs in a difficult time. This could be mental health support, work experience, internships, volunteering, skills sessions or finding ways to create opportunities for them to work with you.
Theme 4 – Friends
Then pandemic and being in lockdown has had some positives for friends but also left some people feeling isolated and lonely. Lots of children and young people reported in the different studies that they felt closer to their friends through lockdown, or that there had been no significant impact. In one report, 43% of respondents said they had sent an encouraging message to someone and another 23% said they had sent a video to make someone smile.
I’ve really seen who my real friends are, who will get in touch in the bad times too.
Children, though, were really worried about their friends, with over half of responses disclosing their concern for friends from the 8-14 year age group. The loss of connections has had a big impact on some children and young people, with lots of the studies sharing how they had realised the value of their friendships with others, or it has highlighted for some that they are very connected through activities but don’t have “real” friends. One report shared that 35% of young people said that they felt lonely most or all of the time, compared to a 17% response rate from parents thinking about this.
Book Club request: Make sure that recovery plans include supporting the mental health impact of not seeing friends for so long, helping children and young people to learn how to reconnect with others. Create spaces and opportunities for people to come together safely in person and online, both as individuals but also info family groups as interests or preferences might have changed through lockdown. Hospitals and health services could help do this as part of volunteering in the NHS, creating condition online drop ins or by asking patients and families what would help them around visiting times when family members or friends are in hospital, so that they can stay connected through difficult times.
Theme 5 - Family
In a similar way to friendships, some children and young people have seen that their family relationships are now stronger, but others have seen a huge amount of strain put on their family dynamics. Between 20 and 40% of responses across the studies mentioned families feeling that their relationships were harder or that they were struggling to get along together during lockdown. For some young people, this breakdown in relationships could lead to other issues getting worse leading to more youth homelessness after the lockdown. Fifty-seven percent of young people felt they were coping fine at home during lockdown, but some young people mentioned the need to have support ready for those going back who have experienced bereavements or family breakdowns.
Living in close quarters, with little opportunity to establish their own positive space, is having a damaging effect on some young people
Children and young people had picked up on family worries during the pandemic, with one report of 8-14 year olds showing that 30% of them thought their parents were worrying about money issues. There have also been lots of children and young people sharing their fears for family members whether that is because they are key workers, that they might contract COVID-19 and die, or because they in difficult family situations or other reasons.
...my grandma has lung problems and she lives with me and I don’t want her to die like lots of people have
We wanted to say thank you again to Marcus Rashford for his work to make sure children and young people in England could access free school meals vouchers through the summer, which had been picked up as an issue in some of the reports about the need to make sure there was support for people to get their free school meals if they were vulnerable children and young people.
Book Club request: Health workers need to know what support is in their local area for families and how they can access it and if this has changed due to the pandemic. More families are at risk now than they were before but might not want to ask for help or know where to go, so doctors and health services need to ask more questions to find out who might be struggling. Health services need to think more about how they give information out about support services to everyone in the family, with information available for all ages and in different formats or languages, and to see if they can create new support groups to talk about their concerns around family relationships, mental health, coming out of lockdown/stopping shielding and other experiences from lockdown.
Theme 6 – Health needs
There have been some positives with children and young people saying they have been getting enough exercise through lockdown (76% of 8-11 year olds and 67% of 12-14 year olds in one report). Children and young people with health needs, whether they are linked to physical health or mental health, have been really affected by the lockdown.
There have been issues with getting reviews for long term conditions or follow ups after surgeries that happened just before lockdown, or regular face to face counselling sessions or CAMHS appointments being disrupted due to lack of privacy, poor Wi-Fi / tech access issues or services not being able to adapt quickly. Thirteen percent of 8-14 year olds said they didn’t know who to go to if they had a health question during lockdown and over 80% of young people accessing mental health support from friends and family.
It sometimes feels like I am screaming into an empty box about the treatment of disabled people under the current situation
Sixty percent of young people in one survey stated they would be happy to have a COVID-19 vaccine as it would support their family to stay well. For young people with mental health needs, lockdown has been a challenging time for some, particularly those who were then worried about harming their family members, or where they could see they were harming themselves, such as in managing OCD (obsessive compulsive disorder).
It’s made my OCD so much worse, washing my hands every 5 minutes or using hand sanitizer
Book Club request: Please think about what support they had to keep healthy, happy and well that might have been from other services which has stopped, so that you can help to campaign to get all services restarted. There has been stress and anxiety caused by appointments being cancelled – please make time for catch up calls for patients and families with long term conditions and rebuild their confidence and relationship with you. As you plan to stay virtual, think about how to make this fair, private and equal for patients and families from vulnerable backgrounds or who aren’t tech savvy.
You can read some tips from young people on virtual health services.
Theme 7 - Information during the pandemic
This has been a real challenge for children and young people who have been worried about their families and friends, but no having information created specifically for them which has been shared by the Government or mainstream news/tv channels. There have been negative stories in the press about young people not following the lockdown rules, but studies we looked at challenged that, with 91% of respondents to one study of over 1,500 young people saying they were following government advice and 99% knew two symptoms of COVID-19. One report mentioned that 15% of respondents had said that the main factor which helped positive mental health was avoiding the news completely.
I had to make a conscious decision to not constantly check the news to avoid making myself too anxious
There were challenges around the easy read access to information or positive messaging, with there being a role for news and social media influencers to reinforce progress to control the pandemic and positive affirmations. Children and young people also wanted information about managing worries and anxieties, stopping the boredom and about coronavirus in an accessible way that was relevant to them as children and young people. Eighty-six percent of information on coronavirus was coming from family and friends, so it was also important that they had the right information to pass on to their children, young people or friends.
Book Club request: In recovery plans, think about how you will target messages about local lockdowns, new waves or changes to the rules to children, young people and adults in different ways. It is important that information comes from trusted resources so also think about how in health appointments you can educate children and young people on trustworthy local information sources like trust social media sites that they might now know about because they places where they got information like schools or charities have been closed. Make sure pandemic information is clear, easy read, accessible and visual but make sure it is clear it is for children and young people as well.
Theme 8 - Virtual living
Young people are spending a lot of time on their phones or computers for school, work, social or health appointments, but one report mentioned that 35% of young people said they feel lonely most or all of the time. Virtual living has created extra worries about being safe online or being able to keep up and do well when learning from home. There have also been challenges where families do not have access to the internet via a laptop or tablet at home or where they are sharing devices or data between people.
While for some, the access to apps to connect with people such as FaceTime, WhatsApp video call, Zoom and House Party have meant that they are keeping in touch with friends, family and grandparents, for others, this has been too much.
I’m on the phone a lot more than I would be before, and have been overwhelmed by the amount of people asking to call me or hang out or new group chats which have been formed as a result of the pandemic
There have been different experiences for children, young people and young adults around virtual online learning with some having lots of online lessons and support and others having no contact for weeks. Similarly, with health appointments, not all doctors or health services have good technology or know how to use it which can be frustrating when you want to talk about a health condition. For other young people, it hasn’t been easy getting mental health support online in the room next to your family or where you are sharing devices and you don’t want them to know why you want to use the tablet.
Book Club request: As part of your local area recovery plan, coordinate between settings to help provide better access to services virtually, with help and support for people who don’t have access to tech, WiFi or there are issues with privacy. Build in reminders about being safe online and switching off digitally as part of your health conversations, and think about what workshops or help you or other organisations locally can provide. Help to make video or online confidential support work well (eg counselling) but also have conversations with your schools in your areas about how virtual learning can help lots of children and young people with long term conditions to learn and manage their condition well... maybe this could carry on?
Keeping you safe
We understand that you might have worries or concerns, or watch or read new things in the above that you want to talk about.
As well as local support, you can use these national services:
- The Mix, a charity supporting young people/young adults online or by phoning 0808 808 4994
- Childline for support for children and young people online or by phoning 0800 1111
- Kooth - an app for young people with an online mental health community
- NHS Every mind matters - lots of different resources for all ages
- Wellbeing for RCPCH members as health professionals - resources and articles curated by other members