Who diagnosed your chronic pain? - Someone else (please specify) - Text
Combination of consultants and other practitioners

Initial thoughts - parent and child combi (qual)
Could be useful about helping those without chronic pain to understand what it’s like liking with it
If it's full of stuff about the pain not effecting my life, don't bother..
I think it’s a really good idea as long as it doesn’t lead to people dwelling on their pain
I love the idea! A lot of concerns come to mind, though.
Its a good idea as long as its good, well-meaning and doesnt do harm
It would be really helpful since many resources cater to older generations or aren't very good
it would be fantastic as there are very little resources for people my age in my area
I’m really excited about it as there are not many resources geared specifically towards teens
It would be very useful and entirely necessary, however it is vital that young people have input.
I think trying anything to help make us feel less alone is a good idea.
I think it would be super cool and I definitely would want to try it.
Fantastic idea, definitely something that should be more widely available!
Anything to help even a few people. Everyone deals with it differently.
A good idea, however it can come across offensive because people with chronic pain have tried a lot
I think it’d be very useful as finding out how to deal with chronic pain is very difficult
It would be beneficial, using social media platforms would be good for that.
Could be helpful to gain support and sharing new ideas on how to help pain
I think it’s a great idea, it would be good to chat with others in the same situation
Its a very good idea as soon many people need help but cannot get it
I think it would be a good idea. I struggle to find people that understand what I go through
I think it could be really helpful and would be well received by many who are suffering
I think a new online resource that could help young people with chronic pain is a brilliant idea.
I think it would be very helpful as I haven’t found a resource specifically aimed at young people
Interested as can become very isolated from friends and family due to the pain and fatigue
It has to-be something that isn't already on offer and that can link to NHS services
It's hard to be in pain and to feel so alone during times when it's hard I think that not being alon
Amazing. I’m always looking for new ways to control pain and not feel alone!
It could be good but only if it is targeted appropriately eg not patronising
It would be incredibly helpful as chronic pain for young people can be incredibly debilitating
I think it's good because even most doctors don't really understand what going on with you!
I think it would be very helpful, as from my experience, I’ve recieved very little help
It would be helpful but would have to be accessible to different young people with different pains
It would be extremely helpful as there isn’t much awareness surrounding the situation
could be a good idea as long as it wasn’t patronising as doctors often are to chronic pain patients
I think it is an excellent idea so us young people know what can help and how to support one another
It's needed but has to be useful, knowledgeable and accessible to interest people. Many use Facebook

Is there any technique or therapy (not yet mentioned) that you think would be especially useful for you to be able to access at home?
Learning acceptance and distraction techniques
music therapy and group socialization options
Music therapy and support services for people with friends with chronic pain
A communication resource aimed for those with chronic pain so that you can stop explaining it
Speaking to others with chronic pain !!!!!!!!
advice on how to get better at moving around the house and doing chores, like hack videos
I think music is a good therapy for a lot of teens.
Guides on how to manage everyday situations when you can't walk or lift or do fiddly stuff
A diary to input pain scale to show professionals at appointments
The ability to connect with others in the same situation - makes you feel less like a freak
A personal physio at home would be great so with every pain I get I can get help hahah
How to manage EDS first aid (for dislocations and prolapse)
Listening to music helps with the mentally challenged parts
Saline infusions therapy for Dysautonomia related headaches.

What sort of structure would you like a resource with multiple pain management techniques to have? - I would like something else (please describe). - Text
Options of structured or unstructured so you could make a decision off what is right for you

Is there anything that could motivate or prevent you from using an online pain programme on a regular basis? - Yes (please state) - Text
Adults who talk to me as if I'm stupid. Who think I am lazy or faking. Who don't get how bad some days can be..I'm a teenager who wants to have a fun life, if I've had to give up my favourite sport it's because I had no other option. Not because I think I'll die if I do it..I'm not stupid..
I would be prevented from using something if it was patronising
If the only way to use it was to go through every section, I would steer clear. Not every piece will apply to everyone.
knowledge that it works, good support and resources within the programme, no nagging but maybe gentle reminders to do it, not having too much pay back from the programme (some exercises cost too much energy or pain to be worth it)
A forum or chat for young people to support each other through it. Also connections with other young people doing the programme, so you could connect with others and motivate each other.
Pain and fatigue! Sometimes it is hard to find the time/energy to use resources like that because we are sick!
If it was affecting my mental health negatively
Lack of undsrstand. Rude comments. Needs to be good to use for people of all stages - ie like me completely bed ridden, full body chronic pain and unabke to move. The advuce and tips if there is soem, needs to be useful to ALL people
Had to be well written and have clear explanations without being patronising. And not put pressure on you to complete things otherwise you’re less likely to use it on a regular basis.
The people have to be kind and no cyber bullying
Motivate - progress tracker and reward chart style. Prevent - inaccessible website or activities that are too long to do in one sitting
If it wasn't useful - I couldn't find there anything I didn't know already or the information would be constructed in the harmful way. There was no point as I could find everything easier on Facebook group

Are there any additional comments you would like to make about online chronic pain management for young people?
Don't bother if it's going to be like the hospital pain clinic!
There’s very little currently available. It can feel isolating.
So often pain resources are focused on pretending your pain doesn't exist and going back to normal life. That can be extremely traumatic and leave permanent, negative effects on patients.
Make it general, make it safe for everyone, make it accessible, make it good.
Getting answers about whether one should put through the pain and do things or not would be helpful.
The most useful support, in my experience, comes from other young people. A list of medical practitioners who support people with chronic pain would be useful.
Make sure to state that it’s personal management and not forcing treatment on them
I think this would be extremely helpful, please can there be a way to contact others with chronic pain through this app too ?
It needs to be real, like from the perspective of people in our conditions, not just the medical side of treatments
There are massive differences between young people and it’s difficult to create a programme or website that appeals to all ages without it being exclusive to some or patronising to others
Making an online chronic pain management service for young people to go to would be brilliant especially as teenagers revolve around internet and there is a lack of chronic pain services in the NHS
Don’t make it too daunting or difficult to use. Validate peoples experiences and let them know they’re not alone
Having advice and guidance from going under child/adolescent to adult treatment as can be difficult to transfer
It's hard feeling alone we need to know that we are not alone and that other people feel and understand what we are going through. It's important to know the support is there for us
I've never done it before! I have not been offered anything like this and think it could be hugely beneficial
It nèeds to be versatile and cater to people of all abilities
Some help I have received from some places have been condescending because of my age... any health site that can help without talking down to us would be lovely
I would like there to be ways that you could maybe get involved in pain management clinics as I don't know how to get involve and I wish I could get into one!
I think it will give us young people more of an understanding of what to do and how to do it, instead of doing things that could damage us in anyway, I also think it will be good for support

What are your initial thoughts about creating a new online resource that could help young people manage chronic pain?
If designed well it could be very helpful
I think it would help a lot of young people get the help they deserve.
My daughter doesn’t use social media apart from a WhatsApp group and YouTube...
This would be good. But my son uses online to game so maybe software that makes it exciting and game
I think it would be awesome. I don’t think there’s is many resources for teens.
It would be a good idea so that they can compare and make friends with others who understand
Great idea. Teens are reluctant to ask for help and support.
It would be great to have an online resource specifically geared to kids and teens
Would be helpful.Been hard for her hearing that it is what it is and you just have to live with it!
may be good but medical professionals have to take chronic pain seriously and not dismiss due to age
I think it is a great idea and would help with primary care
Would need to be wide-ranging to cover different causes of pain; could make it unwieldy to use.
Very good idea Would help young people as can be isolating to deal with & help others to understand
It would be a fantastic safe resource for so may teenagers who are isolated with chronic pain
not sure if really helpful- lot of resources no idea of reality- need practical help and a life
Sounds like a good idea. Anything online would be sensible.
Well, it depends on the help and it depends on the specifics of the suffering
Excellent idea. Ease of access from home. Not reliant on GP referral etc - self ownership/management
I would be very interested, both for Myself and my children to learn from
Absolutely could help. From education about neurology to ADL tips.
I’m not sure. I’ve tried these as an adult and they’ve ended up being competitive over pain
Anything that can offer specific advice can only be good

Is there any technique or therapy (not yet mentioned) that you think would be especially useful for your teenager to be able to access at home?
How to meet or contact other teens with similar conditions.
counselling for pain and condition not for getting to school only
Section on occupational therapy so they can see what aids are available which might help.
Information regarding their legal and medical rights to access healthcare/education/benefits
Home not the problem- isolated enough as it is - she needs friends and to socialise
Online CBT specifically around managing chronic pain/challenging thoughts - for YP/age groups
Instructions on how to apply kinisieology tape, how to be their own advocate at school, links to aid

Is there anything that could motivate or prevent your teenager from using an online pain programme on a regular basis? - Yes (please state) - Text
Needs to be explained well, not condescending
Daughter is autistic she would have to feel she wasn’t being judged if she couldn’t answer or answered in a “strange” way.
They’d be more motivated if it’s not condescending and doesn’t minimise the issue. We’ve seen professionals who have caused issues with engagement by being condescending.
Evidence it will work, another teenagers perspective
if they think it is monitored by their doctors or school and perhaps parents
being able to link up with others in similar situations
Advice from a non sufferer or a condescending professional with no hands on knowledge. Text books and studies are not relevant to the individual and teenagers give up too early in programmes due to professional IGNORANCE.
She has never used them so I have no idea
Any declaration that this will cure or fix your ailment She knows better and upon this verbage she will distrust the info source.

Are there any additional comments you would like to make about online chronic pain management for young people?
Some things I’ve seen emphasis the ‘mental aspects’ of pain too much ie that positivity helps. It needs explaining but not over-emphasising or the young person may think that ppl don’t believe them
The teenagers are the experts they know what they can do and they need to be able to help each other with examples of coping strategies
Make sure it doesn’t go along the pain is all in your mind and you need to just get over it route!
More awareness/understanding from professionals of daily ongoing pain and believing the teenager.... support and listening from a professional is everything
This could be hugely beneficial and we would love to see one linked to hEDS.
it hats make them believe that it is for their benefit, not about pressurising them to get back to school or an active life, it has to make them believe that they are listened to and supported
It would be important to note the types of different conditions that can cause chronic pain, to help young people identify with their own particular condition or conditions.
Parents and teenagers should be listened to more on a individual basis, professionals get it wrong because they have pre-conceived ideas and do not listen to a patient. They THEIR opinions heard more.
online can only be one part of it- my teenagers needs real people in her life not more online stuff
So long as it is totally specific to the person then it might work. My daughter’s pain/symptoms of EDS could be totally different from the next person who has similar EDS
It would be helpful to break it down into age groups. It would be helpful to provide information in a way that those with additional needs (ASD etc) can access (not just words/pictures but audio etc).
Advocate in schools, make Some mindfulness exercises like games, incentivise completion of modules, talk on their level
As a PT working with multi factorial patients with combined neuro and Ortho disorders.... Please be very cautious with advising PT, and general exercise online.
All resources accessed so far have been disjointed, it would be good to have them all under one medical faculty .