By Arno Ebner, Paediatrician in Cairns, QLD
Welcome to my first blog of the new year 2019. As promised, I closely followed the recent discussion about online family educational material for children and adolescents with chronic pain conditions. Below you will find the collation of resources from the one’s I use, and I added now a lot of additional useful resources that were presented on the discussion by various Paediatric Pain health professionals from all over the world. Thank you to everyone for sharing your knowledge.
I plan to update this list once a year and to check for and to remove outdated links and add new one’s as they come.
Without a doubt this list is missing a lot of other excellent resources that I am sure exist somewhere. If you have any suggestions and know about other resources, a YouTube video, a website, an app, a book, handouts etc. please share with us. Just email your recommendation to the APS secretariat at email@example.com.
Don’t forget to have a look at this article from Lauren Heathcote et al, ‘Pain neuroscience education on YouTube: a systematic review’, just published December 2018.
So, this is my personal resource list I use for my parents, caregivers and children and adolescents with Chronic and Persistent Pain:
- Good relaxation apps are “Smiling Mind”, “MyCalmBeat”, “Take a Chill” and “Yoga for Kids”
- Designed to target anxiety is the ‘MindShift™” app to take control over worries
Two similar yet both excellent books are
- ‘Conquering Your Child’s Chronic Pain’ by Christina Blackett Schlank and Lonnie K. Zeltzer; and
- ‘Managing Your Child’s Chronic Pain’, by Tonya M. Palermo and Emily F. Law
General mixed pain information. These websites contain a variety of info material for parents and children and explain what pain is and what they can do about it.
A printable PDF summary from the Auckland Hospital Paediatric Pain team about what pain is, with many tips and ideas what you can do about.
The New Zealand Paediatric Society website’s pain site developed by their Special Interest Group Pain in Childhood. Brief general information for families about chronic and persistent pain with book and app recommendations, videos, external links and a downloadable booklet ‘Understanding persistent pain – how to turn down the volume on persistent pain
The Australian Pain Management Network offers comprehensive information for everyone, youth and health professionals alike. You will find an abundance of materials about what pain is, and how to better manage it with information about medication, mindful strategies, nutrition, physical activities, sleep. The information for parents and youths is usually in video format while the health professionals’ information links to reading resources and external links.
Rachel Zoffness, a Child Psychologist from Northern California created this website for patients. Find many useful links to videos, articles and info sites under ‘Resources’. They cover information about different forms of pain and management strategies to use.
Information on acute and chronic pain from symptom recognition, assessment and diagnosis to treatment and long-term outcomes from The Hospital for Sick Children in Canada. This learning hub is made for patients and families.
Learn. Plan. Take Charge of Pain. This web resource assists children and parents to understand and manage pain and gives things to try to help feeling good again.
A Canadian website with toolkits and resources for acute procedural, acute presenting and chronic pain. The website is more suitable for health professionals than for patients, but you will find useful handouts like the 40 page ‘My Pain Toolkit’ for young people and teenagers.
Basic information but covering many aspects of chronic fatigue syndrome and what one can do to improve it.
From the Chronic Pain and Fatigue Research Center in Michigan comes this symptom management program for patients with fibromyalgia. It consists of learning and management modules.
Comprehensive information, tips, support and personal stories to help manage musculoskeletal pain. This painHealth website was created by the Department of Health, Western Australia, in collaboration with Curtin University, the University of Western Australia and the Musculoskeletal Health Network.
Mindfulness and relaxation information. These websites offer limited information about pain itself but have many useful self-helping strategies, e.g. relaxation practices and mindfulness tactics
A comprehensive self-management website developed by Psychologist Dr Rachael Oakley. The website contains an abundance of resources for children in pain and their parents. There are how-to-videos, podcasts and guided exercises to watch and listen to for coping strategies, mindfulness and relaxation exercises like breathing, active muscle relaxation and guided imagery. The Paediatric Pain Blog is full of tips for parents how to help their child in pain, e.g. with attending school and there is a good video collection with coping stories from children and parents.
Not so much about pain but the Anxiety Canada site has cool information about anxiety for youths. Learn how to face your fears, to think right, how to chill and about healthy habits and what to do for common problems with anxiety.
CALM is for Computer Assisted Learning for the Mind. There is no information about pain in general, but the website offers mindfulness and meditation exercises via audio files and a few reading materials.
It is useful to strengthen one’s resilience and the ability to cope with anxiety, stress and finding a meaning in life. Good if you like laying down and listen to guided relaxation exercises
On this Canadian website you will find ideas and resources for mindfulness exercises incl. apps, podcasts and videos
Here you find an overview of YouTube videos. Videos on YouTube might be removed or changed. If the link does not work use the video title for the YouTube search bar.
Migraine: How it works and how to get it under control!
Understanding pain – and what’s to be done about it in 10 minutes (New Zealand)
Elliot Krane: The mystery of chronic pain
Understanding pain – and what’s to be done about it in 10 minutes!
Understanding Pain What to do about it in less than five minutes
Yoga Progamme for Teens with Recurrent Abdominal Pain
Understanding the Complexity of Pain
Tame The Beast — It’s time to rethink persistent pain
How does your brain respond to pain? – Karen D. Davis
How Do Pain Relievers Work? – George Zaidan
What Is Pain Video
Understanding Pain: Brainman chooses
Living with Epidermolysis Bullosa – Coping with Pain during Bandage Changes (German with English subtitles)
This is the end of the list. I am sure you find something useful here. Please don’t forget to send me your own suggestions. I can be contacted via the APS Secretariat at firstname.lastname@example.org
Kind regards and hope to see you at #auspain19!
[…] So, here is my personal resource list I use for my parents, caregivers and children and adolescents with Chronic and Persistent Pain for 2020. The list can also be found here. […]