The Mental Health & Wellbeing Hub - CCAA | Charity Supporting Children With JIA

It is so important to look after your mental health and wellbeing. There are many things you can try to take care of your wellbeing, but it’s not always easy and what might work for some, might not work for others. Knowing where to start can sometimes be the hardest part. In the CCAA Wellbeing Hub we have brought together some resources and information that we hope may help you and your family during your JIA journey.

‘Boost Your Wellbeing’ Webinar Resource for Young People (13-17)

In March 2025, a group of charities offered an online social for young people with rheumatic conditions aged between 13 and 17. Here you will find a recording of John, a psychologist who works in rheumatology, answering 4 important questions that were submitted by young people:

1. How do I explain my condition and needs to my friends and teachers at school?

2. How can I accept my condition and feel more at peace with it?

3. What can I do when people make fun of me in PE because I am not able to do some activities?

4. I feel guilty that my parents worry about me so much – what can I do about that?

Watch and listen to John’s advice here.

Development Stages: How to support my child

Knowing how best to support your child in dealing with their diagnosis and their appointments etc can feel like a minefield. We hope you will find these age related tips a helpful guide.

Infants and Toddlers

As a parent or caregiver, focus first on trust, security and safety. Your child doesn’t have an understanding of illness or health conditions and can feel worried or scared by being away from you or going through painful procedures.

HELP YOUR CHILD BY:

For procedures and admissions, staying with your child as much as you can. It’s hard as a parent to feel that you can’t ‘fix’ something which is upsetting your child. Hold them, soothe them, interact with them and acknowledge how they’re feeling.

Preschool age children

Children this age might start to understand what being sick or ill means. However, there can be confusion about what has made them ill. For example, children might think that vomiting makes them sick, rather than the other way round. It can be difficult when limits are imposed by being in hospital or by needing to take medication at set times, as children this age are developing their sense of independence.

HELP YOUR CHILD BY:

Being clear about the things a child does and doesn’t have a choice over. Given the chance, most children will say ‘no’ if you ask them to do something! Offer closed choices (for example ‘Do you want to sit on my lap for your blood test, or do you want me to hold your hand?’ or ‘Which toy would you like to cuddle while you have your medicine?’.

Early school age children

Children start to develop a sense of who they are in their environment and might be able to explain some reasons for their condition even if these don’t always make sense. Check out whether there is any magical thinking (for example ‘I didn’t eat my vegetables so I got sick’ or ‘I was naughty so I got sick’).

HELP YOUR CHILD BY:

Involving your child in managing their condition (with close adult supervision!) in an age appropriate way. This might be something like getting the distractions ready before they have their injection. You can also reassure your child that their condition is not their fault and encourage talking about it.

Older school age children

These children are starting to develop their understanding of their health condition but will not react in the same way as adults. They may be aware of visible or invisible differences between them and peers. They might also be affected by missing school or not doing the same activities as their peers.

HELP YOUR CHILD BY:

Talking to your medical team so that you’re clear on what your child can and can’t do. You might feel pulled to protect your child, which is completely understandable, however supporting your child to do as much as they can supports them to feel empowered and part of things.

Adolescents

Identity is more important at this stage in development. Your child is starting to work out who they are, and there is more focus on body image. If your child’s condition affects their appearance, this can affect how they see themselves.
Teenagers can find it difficult to think long-term and you might start to see more opposition to taking medication or following recommended treatment.

HELP YOUR CHILD BY:

Supporting your child to start to take more responsibility for managing their condition. Working with your medical team to go through the ‘transition’ process to adult care. This starts earlier than you might think!
Talking about all topics that are important in adolescence – education, exams, sexuality, substances. They are still a teenager!
Talking about ‘Health Jobs’ – there are things that we all need to do to look after ourselves in the longer term e.g. eating well, exercising. Model these things for your child.

We are very grateful to Clinical Psychologist, Dr Rebecca Dale (Oxford Paediatric and Adolescent Rheumatology Centre/OXPARC) for allowing us to share this useful age related advice from ‘The University of Michigan Health System’.

Wellbeing Leaflet

As part of our collaborative work with other charities on mental health and wellbeing support for families we have produced this leaflet with top tips and links to a wealth of useful resources.

Download the Wellbeing leaflet

Resources for Anxiety

This fantastic resource from the research network ‘Emerging Minds’ is not specifically about rheumatology but more about supporting our children and young people with any anxiety they might have.

If you click on the link there is an ‘Advice for Parents & Carers PDF‘ which you can download. It has lots of advice and links to further resources for all age groups and also for supporting children and young people with specific needs.

Watch the Wellbeing Webinar

During 2023, CCAA were part of a Wellbeing Webinar with our friends at Arthritis UK and other charities. The webinar is about living with a rheumatic condition when young. During the webinar, two psychologists give a wealth of coping ideas, strategies and tips to help support the wellbeing of children, young people and their families. If you missed it don’t worry because we have the recording right here for you to watch at your leisure. Simply click here for the Wellbeing Webinar.

Thank you to all the charities and Health Profesionals that helped to deliver such a fantastic resource for children, young people and families living with rheumatic conditions.

Teapot Trust

Tea Break Art Prompts – Fill Your Cup
Teapot Trust have also produced this lovely and creative self-care booklet for parents and carers, especially those supporting a child with a chronic condition. You may like to take a few mindful moments yourself.

Tea break art prompts

Teapot Trust is an art therapy charity, at the forefront of mental health support for children and young people living with any chronic, physical condition – using art as a ‘breakthrough’ as many children cannot easily articulate their feelings verbally.

It is powerful and transformative.

CCAA work closely with Teaport Trust helping children and young people with JIA through the power of art. Teapot Trust’s provision of professional art therapy for children and young people with chronic conditions has many benefits. Here’s an overview, taken from the Teapot Trust website, of just some of them:

Art therapy resources

We would particularly recommend the following Teapot Trust resources:

‘Growing up with Chronic Illness’

The resource was developed with children and young people. It includes a timeline about experiences at different ages (very helpful to have an insight into what your child or young person may be thinking and feeling or as a ‘way-in’ to have a conversation with them)

plus:

a letter to children and young people with very helpful and positive messaging
a letter to share with Health Professionals
a letter to share with Teachers
a letter to share with Mental Health Professionals

Ideas and suggestions to try at home together with your child including some follow-along video tutorials.

Tips & Tricks Leaflets

By parents for parents.

Alongside some JIA parents, CCAA have created some Tips & Tricks leaflets. Click on the links below to download and take a read:

Useful Links

Mind

If you are experiencing problems with your mental health, supportive and reliable information can change your life. Mind help empower people to understand their mental health and the choices available to them. Click here to get in touch.

Help for Parents

The Help for Parents website is for parents and carers supporting a young person with mental health problems. It aims to help you to help your young person by directing you to sources of support, advice and information.

CCAA Local Groups

Some people find that reaching out to others can help. CCAA have a network of local friendly support groups run by volunteer parent reps. In the groups we share experiences, offer mutual support online and in person and arrange regular meet ups for the whole family in your local area. You can find your local group here.

CAMHS Resources

The CAMHS Resources site was created for young people, carers and professionals to pool together lots of helpful resources from across the internet that are available to help support yours and your childs mental health and well-being.

Young Minds

Young Minds supports mental health in young people. Whether you want to understand more about how you’re feeling and find ways to feel better, or you want to support someone who’s struggling, they can help.

Listening Books

Listening Books is quick and easy to use service and opens up the wonderful world of books for people with an illness or condition that impacts on their ability to read the printed word. This could be a specific learning difficulty such as dyslexia, a mental health condition like anxiety, a visual impairment, or a physical condition that makes it more difficult to hold a book, such as arthritis.