I think parents of kids with chronic pain need some form of training as well as peer support. I’d love to be part of working out a model that can be used anywhere.
This is what I would like to see.
I am imagining a programme where parents who have raised children with chronic pain are recruited and trained in the latest research in helping kids in pain. This would provide a valuable mix of theory and experience.
These parents would then run a workshop every three months or so for any new parents coming through the hospital system.
A Parent Friendly Code
I’d like to see a very parent friendly realistic training set up. I think of identifying a set of common situations and giving them all a colour. Code Red, Code Blue etc. I’d develop a big fridge magnet to remind parents of the code colours. That way parents can speak to each other in their own short hand and navigate their way through tough situations.
I imagine parents might suggest to each other, “Hey could this be a code blue situation”. Parents agree to just consider the possibility and decide whether a different approach might be better.
Use Social Networks
I would like to see a community development model applied whereby each new group of parents are encouraged to form there own social network and meet again every few months to discuss what issues they have been able to identify and diffuse. They might add new code colours.
Perhaps the full time care parents could use Twitter as a way of keeping in touch and chatting to each other about how they are going using the techniques they have learnt.
Help In Many Forms
I think this would be helpful in a few ways –
- it would break the isolation parents feel when they are home caring for a child with chronic pain
- it would provide a positive peer group to reinforce using coping techniques and self care
- it might help to support couples staying together by encouraging people to identify predictable pressure points for families
- it would give parents a framework and shared language for approaching problems.
What do you think? I really believe that parents who understand the pressures can transform the experience for others. It is a very dark road and it doesn’t need to be.
Here is a summary of what we might do –
- Find experienced parents interested in working with parents new to having a child with chronic pain
- Organise a review of research about parenting kids in pain
- Develop a workshop for parents of kids with chronic pain
- Run the workshop for new parents led by trained experienced parents