Supporting mental health
Good mental health (sometimes called emotional wellbeing, or simply 'wellbeing') is part of looking after yourself. Mental health is about the way you think and feel, and your ability to deal with ups and downs.
It is important to take care of yourself, whether you have Juvenile Idiopathic Arthritis (JIA) or have a family member with JIA. We have collated some free resources that can help you look after your mental health.
Many children and young people with JIA will not need additional mental health support, but remember that it is important to access the support you need if you or your child need it.
Resources
Top tips for your mental health
The people behind Children's Mental Health Week (Place2Be) have produced two 'top tips' leaflets for children and young people, with ideas on how to support your mental health.
For children: Do you sometimes worry about how you are feeling?
For young people: 10 ways to look after your mental health
Brain in my hand webinar
"Brain in my hand" is a way to understand our reactions and behaviours, and is particularly useful for children and young people with Juvenile Idiopathic Arthritis (JIA) to help cope with some of the challenges they face, such as injections and blood tests. In this video Chloe Haines, a child psychotherapist, explains "Brain in my hand" and how it can be used by children with JIA and their families.
Managing the injection experience at home
This short video provides some great ideas for managing worries about needles. The video is under 10 minutes long and includes tips about creating a positive injection experience at home from a clinical psychologist with over 25 years' experience of supporting people with chronic pain.
If you would like a printable copy of the tips given during the video, you can find them here.
Needle phobia
One of the more common concerns around mental health that we hear from parents is anxiety around injections and blood tests. Here are some resources that can help.
Tips and ideas from parents and caregivers on how to ease the pain of injections
These are some suggestions given by parents and carers, as previously shared for WORD Day.
Distraction techniques - using a book or iPad whilst the injection is being done. You could also put together a sensory box with special objects (such as shells, stress balls, feathers etc) which can be used as a distraction technique during a procedure. Or maybe try one of our Kipo spot-the-bird distraction sheets (see below, or download the sample sheets here).
Ask for help when needed by asking your GP practice nurse or Community nurse to give the injection for a few weeks - sometimes taking a break from parents/caregivers doing the injection can help.
Use a cool pack on the area before the injection - some children find the use of a cool pack helps to numb the pain a little. Some may find a cooling/vibrating device like a "Buzzy" helpful. They can be pricey to buy so it may be worth asking others to borrow one to try first.
A warm bath beforehand can help to soften skin.
Breathing and mindfulness techniques to help stay as relaxed as possible.
Try not to show emotion as the caregiver/parent as children can pick up on your anxiety.
A rewards box of small pocket money toys and treats can prove to be a useful distraction and reward.
Stickers as a reward can work well - like the Kipo stickers we include in our Little Box Of Hope support packs.
Giving children an element of control - so they need to have the injection but perhaps they could choose which leg to have it in that week or which day of the weekend.
Keeping to a routine can help some children as that can ease any worrying beforehand.
Having a choice of character plasters to choose from.
Talking to your child at other times about the importance of all their treatment, such as the importance of physiotherapy and having their medication, can help them understand how essential it is to helping them feel better. You could use our Stress Bucket resource as a discussion tool around this.
Parents tell us that drinking hot chocolate before a blood test can really help some children.
Kipo's spot-the-bird distraction sheets can help during injections and blood tests.
Find out more and download the sample sheets here.
The stress bucket is a way to help manage your worries. It can help with injections and blood tests, other hospital visits and procedures, and anything else that causes you or your child worry.
Using the idea of a bucket filling up with our worries can help us manage our stress. The raindrops filling the bucket represent the things that can make us feel worried. If the bucket gets too full, it can cause problems and we can feel overwhelmed. To help prevent the bucket getting too full, we can put good habits in place to help us relax. These are things that we enjoy doing and are represented by the holes in the bucket that release the stress.
Cassie + Friends, a family support charity in Canada, have produced this Injections 101 video with tips and suggestions for giving injections for JIA. They have plenty more tips on their website, too.
Help with taking tablets
The Great North Children’s Hospital in Newcastle has created an award-winning programme called Kidzmed to help families teach children and young people to swallow tablets. You can find more information, including a step-by-step guide, translations, and videos, at https://www.nenc-healthiertogether.nhs.uk/parentscarers/medicine-children/pill-swallowing-kidzmed
A copy of the parent leaflet can be found here.
Hospital appointments and procedures
Knowing what to expect before going to hospital can help reduce worry. Here are some videos produced by What? Why? Children in Hospital that help explain some of the tests and assessments that children with JIA may experience. You might find it helpful to watch these with your child before an appointment. We have included the most relevant ones below, although their YouTube channel has more (please note that not all are relevant to JIA).
Anxiety
General anaesthetic
Blood tests
Infusions
MRI scans
General mental health and wellbeing support
These are some of the best resources from around the world to help support your mental health.
Anxiety Canada have a wealth of free resources for adults, teenagers and children aimed at supporting mental health and reducing anxiety.
Kooth is an online mental health community in the UK for 11-25 year olds, which young people can join themselves to get support, information and advice about their mental health.
Stem4 promote positive mental health in teenagers and those who support them including their families and carers through the provision of mental health education, resilience strategies and early intervention.
The Teapot Trust provide mental health support for children and families coping with chronic conditions by delivering art therapy. Their website includes a number of videos to help with aspects of your mental health, and that of your child. A few of our favourites are below.
They also have advice for parents and carers, and tips for general positive wellbeing for your child.
For anyone in the UK needing specific support, please contact us and request a referral form for the Teapot Trust or see their website for details of how to self-refer to their service.
The Wren Project support people aged 18 and over who have a diagnosis of an autoimmune disease such as JIA. The Wren Project is a listening service where individuals can talk about the emotional and social impact of diagnosis, free from judgement or advice. It is a place to feel heard as you are, validated in your experience.
To be eligible you must live in the UK, have access to a phone, and/or WiFi, and willing and wanting to talk about your autoimmune disease and the impact it is having on your life.
Anyone over the age of 18 can self-refer to the Wren Project here.
Mindfulness and Journaling
Our Little Box Of Hope Teen packs contain a simple journaling tool that can be used.
Calm have a printable journal as well as a host of other resources on their website.
The Teapot Trust explain the benefits of journaling here.
NHS England have lots of resources for supporting young people's mental health, and they have kindly given permission for us to include some short videos in our support packs for teenagers. You can also view them here.
Another tool to help calm the mind is a calm jar, which you can find out about here. This can also be used as a distraction technique during injections.
If you need urgent support...
If at any point you need urgent mental health support please contact one of these mental health services, and remember you can also speak with your own GP or hospital team.
Papyrus - www.papyrus-uk.org, call 0800 068 41 41 free, text 07860039967 or email pat@papyrus-uk.org
Mind - www.mind.org.uk
Young Minds - https://youngminds.org.uk
Shout - https://giveusashout.org/ or text SHOUT to 85258 free.
Childline - www.childline.org.uk or call 0800 11 11 free.
The Samaritans - www.samaritans.org or call 116 123 free.
If you or your child are at immediate risk of harm, call the emergency services on 999.