Episode 80 (Connor Johnstone)
EFFECTS OF VOLUNTARY EXERCISE ON MUSCLE STRUCTURE AND FUNCTION IN CEREBRAL PALSY
Reflections on this episode (Dr Pool)
What a wonderful conversation with an individual who has not only been on the receiving end of our interventions, been involved in research but is now studying to obtain a degree that will support young people with disabilities.
The 'F-words' provide a framework to explore past experiences which in turn give insight to us as clinicians and researchers to both pursue lines of research as well as provide interventions that are truly meaningful to the child. This follows on from our conversation with Emily Prior a few episodes back and for me, emphasises the importance of using the 'F-words' to facilitate conversations with the individuals we work with.
I loved exploring this paper with Connor - his keen interest in muscle strengthening for himself and for the children that he works with comes through so strongly. This is a great paper to be reminded about how to strengthen - the parameters we can use and follow to obtain the outcomes that are reported in the literature.
We must never forget the importance of strengthening muscles because it has such a significant life long impact on the individual. It doesn't matter what GMFCS an individual may present with and therefore, the setting can be flexible - we just need a little creativity! For some, it will be in the gym, for others - the use of equipment, adaptions, and an individual's own body weight is enough to provide resistance - tension within the muscle to enable the muscle to change. Muscles are very plastic and there lies a significant opportunity to improve function.
I encourage you to look at this article and lean on the experience and advice from Connor. Strength training needs to be an important part of our interventions so if you want to freshen up your knowledge using the latest evidence - this is a great place to start!
Episode 79 (Professor Diane Damiano and Dr Ginny Paleg)
RETHINKING OUR PHYSICAL THERAPY APPROACH (REDUX)
Reflections on this episode (Dr Pool)
This was an inspiring conversation. We covered so much ground and this just reflects the expertise of our guests today. Diane has been such a driving force for evidence based interventions. Her work has significantly influenced global practices and her passion was so tangible throughout this conversation. Ginny’s perspective is incredibly refreshing and honest. I love how she seeks out interventions when they look promising but “when it doesn’t pan out”, she has the ability to move on.
There is so much to take away from this episode! The main theme that runs through the conversation is essentially the importance of evidence based practice. It is our professional duty to keep up with the evidence and provide the best level of care. I love how Diane reminds us that there is an urgency in rehab because we have children before us that have developing muscles and brains that need the right input. Science doesn’t compete and this compels us to provide green light interventions because there are so many options now! The question is - why are non-evidence based interventions still available?
We explored this topic and the persistence of therapists in continuing to provide red light interventions or interventions that use red light intervention principles. For sure, the time, money and personal investment therapists put into their profession are factors that can limit the ability to change their practice. Whilst all of this investment originated from a desire to do the best by the children that need our services, I would 100 percent agree with Diane that we need to be better.
We are a medical profession and with that, comes a responsibility to follow the science. We are a great source of information for the families that need our services and they would hope that we are up to date with the latest and the best. I certainly would hope that when I seek medical advice for myself or a loved one that I am receiving the latest and best. Anything contrary to that would most certainly be disappointing, dangerous and also, violate the trust I have in that professional or the profession as a whole. We have evidence now, and this is different from 50 years ago or even 20 years ago. We can’t just be doing whatever we want anymore because unlike decades ago when there wasn’t anything guiding us, we now have the evidence. Therefore, we can no longer say there isn’t enough evidence or that we are waiting for more evidence to come. We can start now.
The more I work in this industry and the more I speak with researchers and leading therapists, I too want our profession to grow in effectiveness, influence and impact. The advertising we see online with therapists using moving surfaces and manoeuvres that attempt to integrate reflexes (of which there is no evidence for despite what is said in the advertising) under the banner of manual facilitation techniques, are all part of the red light intervention family. Even when the approach is rebranded from 50 years ago, there is still no grounding or evidence to support its thought processes.
This contrasts so significantly with the green light interventions which are all based on decades of knowledge on motor learning principles. The difference here with the red light interventions is that these principles have been repeatedly proven, time and time again. The science is very clear on this. There is no argument to the contrary so again, why are we still providing red light interventions when we have so many options in the green light family?
Unfortunately, I would also agree that the only way to stop red light interventions in continuing to be carried out is legislation and perhaps the methodology in Sweden where no red light intervention practices are funded is the answer. When we know that families look to their treating therapists for the answers, we need to ensure that we are a reliable source of information on what is the latest and the best.
I have come to learn that following the science isn’t personal. Saying that an intervention has red light features isn’t personal. Critically evaluating our practices isn’t personal but our professional responsibility. What we provide in our care, as health professionals shouldn’t be personal and based on personal preferences. As a medical profession, if that is what we want it to be, we need a concerted effort by all to ensure that it remains that way.
As Diane said, we’re not done yet and we are continually trying to push the boundaries and find better interventions. To be ready for that though, we need to catch up and not be left in thought processes of 50 years ago. Let’s do this together!
Episode 78 (Assistant Professor Bhooma Aravamuthan)
DETERMINANTS OF GAIT DYSTONIA SEVERITY IN CEREBRAL PALSY
Reflections on this episode (Dr Pool)
The aim of this study was to determine the movement features governing expert assessment of gait dystonia severity in ambulant children with cerebral palsy.
In this prospective cohort study, neurologists graded lower extremity dystonia severity in gait videos of individuals with CP using the Global Dystonia Severity Scale. In addition to this, open source pose estimation techniques were used to determine gait variable analogs to correlate with the assessments of dystonia severity.
Of the 116 participants of children aged between 10 and 20 years, variable limb adduction was most commonly cited to identify dystonia. Gait variables assessing adduction variability and amplitude such as inter-ankle distance variance and foot adduction amplitude were significantly correlated with expert assessment of dystonia severity.
This means that adduction variability and amplitude are quantifiable gait features that correlate with expert determined gait dystonia severity in individuals with CP. Such a finding could help clinicians to optimise and standardise clinical gait assessment in children with dystonia.
What a great follow up to the previous paper - a paper that presented the qualitative data. Now, with the quantitative data, we can really start to drill into the details about features of dystonia in gait, in children functioning within GMFCS levels I,II and III.
As Bhooma said in the episode, it is simply not good enough to have a “you will know when you see it” approach. With expert ratings being as low as 13% accurate in identifying dystonia whilst in clinic, we do need to be humble! We need to do better and this work goes a long way to establishing a framework and means by which we can start to build on this knowledge. The use of open source software that is free and easily accessible is very encouraging. It just means that any clinic can implement these protocols and add a layer of objective quantification for dystonia in functional movements.
I am excited for Bhooma’s upcoming work. She was so generous in sharing the results of work that is about to be published! All this to say - let's keep up with these findings because it is clear that this field is rapidly developing and headed in the right direction that will only improve outcomes for the kids we work with.
Episode 77 (Georgia McKenzie)
FINDING WHAT WORKS FOR ME - A QUALITATIVE STUDY OF FACTORS INFLUENCING COMMUNITY GYM PARTICIPATION FOR YOUNG ADULTS WITH CEREBRAL PALSY
Reflections on this episode (Dr Pool)
The aim of this paper was to understand the factors that influence participation in community-based gym exercise for young adults with cerebral palsy.
In this qualitative study, the team used semi-structured interviews for 39 young adults with CP aged between 15 and 30 years, GMFCS levels I-IV following a peer supported gym based exercise program called Fitskills.
With the overarching theme being “Finding what works for me”, young adults identified 4 interrelated themes that influenced whether gym participation worked for them or not. This includes psychological factors, social participation context, organisational and logistical support and cost.
The novel finding in this paper was that the data provided evidence to support meaningful changes in mental wellbeing following participation in this peer supported gym program. This provides the evidence that we need as clinicians, researchers, parents and support coordinators on the importance of gym programs.
We know that physical activity is often focused on body structure and function or maintaining physical function. We have also known about the power of physical activity on other heath domains and now we have this paper to refer to when we need to make the case with funders about the importance of supporting gym programs. This goes a long way in breaking down the barriers for accessing community physical activity opportunities.
Episode 76 (Dr Roslyn Ward & Dr Neville Hennessey)
IMPLEMENTATION OF AN EARLY COMMUNICATION INTERVENTION FOR YOUNG CHILDREN WITH CEREBRAL PALSY USING SINGLE-SUBJECT RESEARCH DESIGN
Reflections on this episode (Dr Pool)
This study implemented an intervention protocol that was aimed at increasing vocal complexity in 3, pre-linguistic children with cerebral palsy (two males, starting from 15 months and one female starting from 16 months). This was evaluated using a repeated ABA case series design until the children were aged 36 months of age.
Successive blocks targeted more advanced protophone production and speech movement patterns that were individualised for each participant.
The data suggests that emerging speech production skills in prelinguistic infants with CP can be positively influenced through a multimodal intervention focused on capitalising on early periods of plasticity when language learning is most sensitive.
There are so many great messages throughout this podcast. Firstly, beyond the outcomes of this study - this is a great reference tool for those that are interested in Single Case Experimental Designs (SCED). Neville and Roslyn describe the methodology in fantastic detail, highlighting the strengths of such a study design and its implementation in practice. This is such a wonderful example of a SCED. In addition to this, the layers of theoretical frameworks that led to this study design is inspiring to hear. If you are interested in Dynamic Systems Theory, Roslyn provides a lovely summary of why it was chosen and why it is important to incorporate into your practice - it provides a very practical framework for clinicians.
I have to say, it is so exciting to see such a gap in evidence for interventions for vocal development in children with cerebral palsy under the age of 2 years being addressed. In the meantime, ss evidence develops within this space, it is encouraging that we have the tools through HANEN to provide evidence-based interventions at this age (for all children with developmental disorders). It has the advantage of being so easily implemented by clinicians and families alike.
The key message of starting early through the vehicle of fun is something we are hearing time and time again. We are also consistently hearing about the vital importance of being goal directed, task specific intervention and environmental enrichment. Something that really struck me about this conversation was when Roslyn raised a point about the role of vocalisations and the importance of responding accordingly. The example that she gave was the vital nature of responding to infants crying to communicate distress and that the risk of not acknowledging this could lead to dampened vocalisations.
This further supports a topic we have covered before in that pushing through therapies when the child is distressed is harmful. There would be very few situations where continuing to push through therapy when the child is communicating their distress is acceptable. Even if you’re not a speech pathologist, you will walk away with a lot of practical ideas on how to incorporate multimodal approaches within your therapy sessions - especially important if you are working with children under 2 years of age.
Episode 75 (Professor Andrew Whitehouse)
HOW MUCH IS THE RIGHT AMOUNT OF THERAPY?
Reflections on this episode (Dr Pool)
I absolutely loved this conversation. A few years on since our last discussion, with the launch of the Autism CRC publication “Interventions for children on the autism spectrum: A synthesis of research Evidence,” a lot has happened. Namely, Andrew and his team have been hard at work with the implementation and translation of the research findings.
Andrew identifies a single core question that is frequently asked by both families and clinicians alike: “What is the right amount of therapy”? Whilst this is written with children with autism spectrum disorder in mind, it extends to childhood developmental disability too.
What is very clear through the literature is that:
Early therapies and supports are important
There is no standard amount of therapy
More doesn’t necessarily mean better
Quality is as important as quantity
We explore each of these facts in detail and Andrew does a wonderful job centering the conversation on our understandings of evidence based practice. I found it surprising that what started as a civil rights movement that advocated for 40 hours of therapy a week has influenced contemporary practice to such an extent that what was well intended has led to the misperception that more is better. We still need to identify what the minimum amount of therapy and support is required because 40 hours (which represents a full time job and then some!) “loses contact with reality”.
This episode beautifully follows on from Professor Rosenbaum. Here, we have two incredibly well knowledged researchers that work closely with consumers and clinicians - providing their expert perspectives, all of which are backed by evidence with the best interests of children and families in mind.
Andrew’s compassion and knowledge is plainly evident in this episode and I just know that this will provide you with the space to think deeply and answer the call to arms.
Episode 74 (Dr Sarah McIntyre)
GLOBAL PREVALENCE OF CEREBRAL PALSY: A SYSTEMATIC ANALYSIS
Reflections on this episode (Dr Pool)
This systematic review aimed to identify the trends in birth prevalence for cerebral palsy or CP of pre or perinatal origin, post neonatal CP and overall CP by region and was combined for two major networks that being the Surveillance of Cerebral Palsy in Europe and the Australian Cerebral Palsy Register since birth year 1995. This review also aimed to identify the most recent birth prevalence estimate and period prevalence estimate of CP by region and combined for those with data available from birth year 2010 for a current prevalence estimate.
The results include representation from 41 regions from 27 countries across 5 continents. It was found that pre-perinatal birth prevalence has declined significantly across Europe and Australia, with no changes in post neonatal CP. However, from the data that was available from regions of low and middle income countries, the birth prevalence for pre/perinatal CP is high.
It is exciting to see the prevalence rates decrease by 25% in high income countries. This reflects collaborative efforts in research and implementing these findings into real world practice. What I found interesting though is that prevalence rates are nearly double that in low to middle income countries. There is much work to be done here and I was so inspired to hear of the active collaborative efforts occurring to bring these rates down whilst also improving outcomes.
What was important to emphasise in our conversation was that translating what works in high income countries isn’t necessarily the right approach. This highlights the importance of context specific interventions where it isn’t just about the direct intervention but that it is also about the infrastructure and the policies that are in place that surround the child and the family.
On reflection, I can see how this concept is relevant to us as allied health professionals too. Whilst I work in Australia as a physiotherapist and researcher, I am also involved with disability and therapy organisations in low to middle income countries. Over my 15 years of being involved in these organisations, I can safely say that the process of working within local contexts, policies and cultures takes time and indeed what might work in my context in Australia doesn’t always necessarily work in low to middle income countries. This seems so obvious to say but as Professor Rosenbaum said last week, it’s obvious once you point it out!
So this conversation hit a lot of points for me and most of all, I was so encouraged and inspired to know that we have researchers already working together, thinking ahead and preparing for the future not just in the country I call home but in many countries around the world. It is all about health equity and we can all certainly play a part to contribute to this.
Episode 73 (Professor Peter Rosenbaum)
PARENTING A CHILD WITH A NEURODEVELOPMENTAL DISORDER
Reflections on this episode (Dr Pool)
Traditional thinking and focus in childhood disability have been on the child with the impairment - to make the right diagnosis and find the right treatments. The expectation here is that interventions should “fix” the problems which has led to the process of professionals conducting the investigation and management with parents expected to comply with professional’s recommendations. There is certainly much less attention being paid to parent’s perspectives or their well-being.
With the ICF and ‘F-words for Child Development’ we recognise the family as the unity of interest and the parent’s voices as essential elements to all aspects of management. There are important implications of these developments on structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.
This episode will make you think deeply. I love how Peter challenges us, as well as himself about our views of neurodevelopmental disorders. It’s the traditional biomedical model and its contrasts with a strengths based approach.
No matter what area of child health you are in, this episode is relevant - the opportunity to challenge your thoughts by drawing on the latest scientific evidence and decades of clinical experience from some of the most dedicated teams in the world.
As Peter said - it’s only obvious when it is pointed out. I couldn’t agree more.
Episode 72 (Professor Mark Bellgrove)
AUSTRALIAN EVIDENCE BASED CLINICAL PRACTICE GUIDELINE FOR ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD).
Reflections on this episode (Dr Pool)
The Australian evidence-based clinical practice guideline for attention deficit hyperactivity disorder aims to promote accurate and timely diagnosis and provide guidance on optimal and consistent assessment and treatment of ADHD.
This guideline integrates the best available evidence along with multidisciplinary clinical expertise and lived experience - essentially the definition of evidence based practice. The result is a guideline that outlines a roadmap for ADHD clinical practice, research and policy.
With 1 million Australians living with ADHD, costing $20.42 billion per year or $25,071 per individual per annum, this is an important conversation piece. From a practical standpoint, it was wonderful to get through some of the myths that are associated with ADHD. It is not something that can be diagnosed from TikTok videos and labeling someone with ADHD when in fact they do not is stigmatizing for an individual that lives with ADHD.
In addition to knowing what the guidelines say, I found it very interesting to learn about “masking” which is particularly prevalent in girls and women. I would also highly recommend taking a look at Table 13 - a wonderful guide and reference point about our language that was created by people with lived experience. I do hope that you enjoy this podcast as much as I did - it really does cut through all the noise about ADHD.
Episode 200!
The team at the ResearchWorks Podcast are celebrating 200 episodes! With over 4 seasons, invited collaborators with the EACD and AusACPDM conferences and Transformative Practice Award Winners for 2024, it has been a stellar journey. 🚀