Recently I ventured to Adelaide to attend the biannual conference for the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) http://ausacpdm.org.au/
The theme for this year’s conference was ‘Innovation to Participation”. I absolutely loved this conference and I believe it to be the best one I have attended so far. I was so keen to get home and start putting what I learnt into practice, and of course, sharing it here with you.
Here are my top 5 takeaway messages form the AusACPDM conference 2016.
EXERCISE AND ACTIVITIES
There were a number of workshops and lectures surrounding exercise and activity but the one that stood out for me was a keynote speech by Dr. Sean Tweedy (an enthusiastic academic with a background in exercise physiology). Dr. Tweedy highlighted the importance of physical activity in all people (regardless if they have a diagnosis or not) and how high volume and performance-focused training can result in therapeutic outcomes.
He used case examples of Paralympians with cerebral palsy who were all given diagnoses early in life and started therapy around the age of two years old. Some of these patients now do 20 hours per week of exercise and are exceeding every goal they set out – their intense exercise and training has become their therapy.
It was truly remarkable to see these cases and even for me to reflect on some of my patient caseload who participate in intense training.
Dr. Tweedy highlighted that currently scientific evidence for exercise as a form of therapy is not strong – but does it need to be? In a way, physical activity and high volume training is an “end in itself” and an outcome measure. Although Dr Tweedy highlighted that there is little scientific research out there, it was interesting to see a separate presentation on a paper by Lucas, et al. titled “Gross motor performance in primary school aged children living in high-risk drinking communities in remote Australia – a population based study”. It discussed children diagnosed with foetal alcohol syndrome living in the remote Australia, having similar gross motor performance as typically developing children, and this is suspected to be so due to high outdoor activity that these children are exposed to.
I am personally a strong advocate for mindfulness and I was thrilled to see such a focus at the AusACPDM conference on cognitive rehabilitation and mindfulness.
I attended one workshop in particular that really got me thinking about mindfulness and its place in neurological rehabilitation. The workshop kicked off with some evidence for mindfulness – one article discussed regions of the brain associated with attention, intereoception (how the body and mind react to stimuli) and sensory processing were thicker in meditation participants compared to matched controls (Lazar, et al. Meditation experience is associated with increased cortical thickness. Neuroreport. 2005 Nov 28;16(17):1893-7)
This one particular workshop I attended discussed the MiYoga app which uses mindfulness in the form of Yoga, aiming to increase attention, physical outcomes, parent-child relationships and quality of life. It was rolled out in a pilot study form and currently the researchers are in the process of gathering data so watch this space!
GREEN LIGHT INTERVENTIONS
An awesome paper by Novak et al (A systematic review of interventions for children with cerebral palsy: state of the evidence. Dev. Med. Child neurol 2013;55(10):855-910) came out a while ago discussing “green light interventions”. This paper went through a systemic review of all the current therapies (Botox, casting, ankle foot orthoses, constraint induced therapy) used in treating children with cerebral palsy and categorised them into red light (do not do this therapy as the evidence for it is bad/ not good), yellow light (you can do this therapy but monitor closely), and green light interventions (do these therapies and interventions as they have lots of strong evidence).
The workshop I went to discussed what made all the: green light therapies “green”. Below is a summary I gathered:
- Early diagnosis and intervention is key.
- Movement initiated and executed by the child. (No interfering, let the child explore, try, fail, try, succeed)
- Unique problems to be explored.
- The child is an agent and make things happen in and to the world. (The child must be doing something that causes something in its environment/ things it is playing with, to change somehow)
- Learning should have structure with problems to solve, variation, failures, always success, lots of practice (There is a large underestimation in regards to how much time is required to develop a skill. Example: toddlers learning to walk fall 17 times per hour and will walk the length of 7.7 football fields)
- Exploiting affordances (I.e.: changing the environment where possible. If Max wants to play basketball, child too short à look at the environment and ask “What can we change?” We lower the hoop. This affordance = success)
PATIENTS WITH CP AND THEIR FAMILIES
This was one of the best workshops I attended. It really gave the whole conference perspective and reminded me why I love my job and how I can be better at it.
I have purposefully made this brief as I plan to release a larger post soon on this topic. These are the big points I took away from the workshop:
- If a healthcare worker wants to ask a parent “how are you?”, we should be mindful of the child’s presence and perhaps call the parent separately. Some parents may hold back what they really want to express as they do not want to speak negatively in front of the child. Parents may even lie to protect their child.
- Don‘t assume that the families don ‘t has a rich and full life. Pity is not helpful, support is.
- Early intervention (not just physical) the better
- “I could not make connection between therapy and its benefits.” (Please see participation below)
- Patients are interested in advocating for themselves and wanting professionals to take seriously – healthcare professionals should empower patients and families with the tools that will better themselves.
This one word was screaming at me the entire conference, I walked away thinking about all the ways I could get my patients to participate in what they want (whether that be school, communicating, sports, music etc.). As mentioned above, a patient gave her experience of being a child with CP making her way through the Australian public health system and one thing she said that stood out way that she “could not make a connection between therapy and benefits” and it got me thinking – maybe our therapies should BECOME the benefits and maybe this is what partition is all about.
It was noted that participation has been a little unclear in the past and future studies will need to define it clearly. By getting patients involved in whatever it is they want to be involved in, they become an active participant. In order to be a successful participant, certain environmental affordances and intrinsic personal factors must be accounted for.
As an example; Jane wants to play soccer. She has always had therapy to help her stretch her muscles and wear an AFO to prevent her from tripping – but neither of these are helping her actively participate in soccer. What if the AFO was designed for soccer, or maybe used post soccer matches when Jane’s muscles were exhausted? What if her stretches were replaced with scocer-focsussed training and strengthening exercises? This way Jane receives her therapy in a way that connects her to the thing she loves -soccer.
EXHIBTORS AND SPONSORS
Of course none of the conference would have been possible without the support of the exhibitors and sponsors. I have listed below the exhibitors that stood out in my mind and you may find useful
Disclaimer: I am not suggesting or endorsing any of these companies or products, simply sharing acquired knowledge to better inform you J
Novita children’s services
An organisation in South Australia that provides early intervention, rehabilitation and therapy to children with special needs.
Cerebral Palsy Network
A support network for people with Cerebral Palsy and their families. Based in Melbourne – an absolutely fantastic organisation offering resources, workshops, support groups, social, health and recreational programs for people with CP.
The Therasuit supports a patient’s posture enabling the patient to complete therapy and other exercises in a corrected alignment. Very interesting stuff!
Orthopaedic appliances Pty Ltd offer a number of orthotic solutions, componentry and more. I was really impressed with the “ultraflex one” joint and hope to use it in hamstring contracture management.
These guys offer home living solutions and modifications for the homes of people with disabilities. That had a wide range but I was really impressed with a portable shower/toilet that could be rented or bought (called the careport).
Professional Assistance for Living (PAL)
Suppliers of chairs, standing frames and mobility aids. They had a monkey standing frame for small children which I found adorable.
Offering a range of healthcare beds and lifting solutions (hoists) these guys were demonstrating a pretty cool and portable hoist.
Freedom Motors Australia
A company that specialises in vehicle modifications (including self-drive) for people with disabilities.