Episode 19 (Associate Professor Alison Salt)
DETECTION VISION DEVELOPMENT IN INFANTS AND TODDLERS WITH CONGENITAL VISION DISORDERS AND PROFOUND-SEVERE VISUAL IMPAIRMENT
Reflections on this paper (Dr Pool)
I loved this podcast - Alison describes what vision assessments look like and how practical it really is even in children with profound or severe vision impairment. In addition to this, what is intriguing is that these assessments can be done in children as young as 12 months of age! Having an assessment with this level of practicality breaks down the barriers which is critical given the importance of early intervention.
The beauty of this assessment is its practicality, simplicity and seamless translation from assessment to treatment. It can be done and reported by parents and therapists within a home environment. The items are easily obtained and can then be used to inform the level of vision and therefore, the type of toys, books and activities that can be used to promote vision.
Alison highlighted that it wasn't just about picking out the right toy from a visual perspective but also from a cognitive perspective. We know the strong association between vision and cognitive development. Therefore, when we are designing therapeutic interventions it is so important that there is engagement and developmental appropriateness.
We need to be specific and we need to be deliberate - we don't necessary need to dramatically change what we are doing as therapists. But we can use the time we already have with children with some very specific selection of toys. It is important not to just fall into the "vision" treatment standard of black and white, high contrast features. They are all useful strategies if it is right for the child and this assessment can help to discern what is the priority.
Episode 18 (Associate Professor Asha Bowen)
CONGENITAL CYTOMEGALOVIRUS AND COVID-19
Reflections on this paper (Dr Pool)
This topic of infectious diseases is a really timely one. Our job as clinicians is face to face with children - we might be at arms length away or we may also be really up close too! This not only presents as a potential spread of an infectious disease, but it is also a point of contact where families might have some questions or potentially may be sitting on some misinformation about diseases such as CMV or COVID-19. There is so much information out there and not everything we read or are presented with represents the true state of science. When developing prevention and treatment approaches, we rely so much on science to provide the solutions because it is based on large data sets that can then be generalised to the wider population.
The power of infection control - hand hygiene, applying barriers and staying at home when sick! They are all seemingly simple but also incredibly effective. The world has changed so much now so coughing into our elbow and even wearing a face mask isn’t something that draws a second glance anymore. This is a good thing because these are important measures to have in place when we are treating children either within their home, the community or hospital setting.
It is so important to look at reliable sources of information so that we can do the right thing to keep both ourselves and our patients safe. Prevention is a key strategy and the power is literally in our hands!
Now when it comes to COVID-19, it was so timely to hear Asha’s passion about the importance of school. For the first time, our government has issued a lock down but with a clear directive to keep schools open. It is intriguing that children don’t respond the same way to COVID-19 as adults do and this has some really important implications for prevention and scientists are still trying to unpack this. Schools are the best place for children to be - to be stimulated and to be in a learning environment sets them up for success and for a better future.
Episode 17 (Dr Bhooma Aravamuthan)
GAIT FEATURES OF DYSTONIA IN CEREBRAL PALSY.
Reflections on this paper (Dr Pool)
Dystonia! It is so wonderful to read an article about dystonia but from a very different angle and one that employs an innovative methodology. This qualitative thematic analysis that codified expert consensus on the identification of dystonia is incredibly valuable because it provides clinicians with a unique insight into expert discussions of a very complex movement disorder. The value of consensus statements is highlighted in the results where consensus was found in 85% of cases after the expert discussions. For many clinicians, having access to experts who can use their years of experience in formulating clinician decisions is just not possible. This kind of research methodology brings this experience straight into the hands of clinicians and I’d love to see more of these studies published!
Identifying dystonia does require a team effort because there are different settings, different triggers and different movements that might be observed and can lead to a formal label and diagnosis. Whether we are clinicians working in the community or part of a tertiary clinic, observations through these settings can be very valuable in forming a consensus about the presence of dystonia. Given the prevalence of dystonia, it is more likely that it is present then not - but the degree to which it affects function or the influence it might have on pain is variable. Regardless, early detection can influence the treatment trajectory and treatment outcomes.
What is also very encouraging for clinicians is to know that dystonia is challenging to detect. One of the major themes from the thematic analysis was how difficult or “hard” it was to detect from a single video of a single motor task. There is so much value in observing movement through videos so this is a great take away. Videos are a simple way to build a clinical picture that can contribute to valuable treatments.
I love that papers like this highlight the importance of at least a multi, but more likely interdisciplinary work and teams in improving the care of our patients. When we put patients first, we can focus on drawing on the expertise around the person to understand their needs and to then find solutions for better outcomes.
Her video podcast link: https://youtu.be/ONrDuhVOFOc
Episode 16 (Dr David Hobbs)
ASSISTIVE TECHNOLOGY PRODUCTS: A POSITION PAPER FROM THE FIRST GLOBAL RESEARCH, INNOVATION, AND EDUCATION ON ASSISTIVE TECHNOLOGY (GREAT) SUMMIT.
Reflections on this paper (Dr Pool)
A wonderful discussion this week with an engineer that works so much in the rehabilitation space! In this week’s pod, we discussed two main pieces of work that David has been involved with. The first, was published in Disability and Rehabilitation: Assistive Technology titled “Assistive Technology products: a position paper from the first global research, innovation and education on assistive technology or GREAT summit” and the second was the work from David’s PhD on a randomised controlled trial on custom serious game system known as the Orbit Gaming System with forced bimanual use to improve upper limb function for children with cerebral palsy.
We know that technology is increasingly a part of our lives and when it comes to how technology is used within the context of rehabilitation, the area is growing rapidly. Of course, within a growing industry, research will be following this growth quite closely but it is also likely that we are not able to access those results as the technology becomes commercially available. It is important that we do realise that there is quite a gap between knowledge and practice.
So when it comes to being evidence based, we need to really draw on what the evidence says are effective modalities and approaches. Our clinical expertise is really important here and we need to ensure that we exercise discernment on what technologies we can use to get the best benefit because we all know that technology is often very expensive. So what can we draw on? Well, we know the principles of motor learning - relevant for any skill whether it is for physiotherapists, occupational therapists or speech pathologists. We also need a framework for the use of technology which in our world is called Assistive Technology. Further from this, we need to also recognise the potential inequity of access to assistive technology that exists within our own country and across the globe.
Guiding our discussion, we talked about the position paper from the first global research innovation, and education on assistive technology summit that revolves around the five “Ps”: People, Products, Provisioning, Personnel and Policy. We also then talked about the four “As” being Access, Affordability, Availability and Awareness. When prescribing equipment or even using equipment in our practice, it is really important to think about each of these components because there is a high risk of resource wastage. It is clear this is not just one sided though! Clinicians need to think about this for sure, but so do consumers and policy makers. Lots of food for thought here - we hope you enjoy this discussion!
Episode 15 (Dr Annie Chappell)
THE EFFECT OF A RUNNING TRAINING INTERVENTION ON ANKLE POWER GENERATION IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY: A RANDOMIZED CONTROLLED TRIAL
Reflections on this paper (Dr Pool)
Running is such an important gross motor skill and indeed for children with cerebral palsy functioning within GMFCS levels I and II, running is a commonly set goal. How often do we hear children setting running goals? When the athletic season comes around, we know that children often feel a little bit anxious about what this will mean for them. This is why this body of work is so important. This work demonstrates the importance of a running training program and that it is possible to achieve individual goals.
Understanding the biomechanics of running is another important takeaway from this work. This enables us to be very specific about our interventions - are we working on strength or power? In this podcast, we discuss the importance of power and the essential need to ensure that our training is task specific. Running requires the ability to generate force quickly and children with cerebral palsy are often faced with muscular characteristics that limit rapid force production for a functional task.
Therefore, to be task specific here means that we focus on rapid generation of force production at the ankle and the hip. The results from this work also highlight the importance of approaching children within GMFCS level I and II differently. It is clear that though both groups of children are functionally ambulant, they each have different needs - are we looking at compensation or normalisation of movement? It is really encouraging to see that improving propulsion through calf muscle power is possible when it is coupled with specific motor learning principles.
I have to admit I was quite struck by the decline noted in the control group. I wouldn’t have thought that 12 weeks would be enough to cause a decline. However, participants in this study were youth and we know that changes in height and weight relative to muscle strength can start to have functional consequences. For me as a clinician, this highlights the importance of physical activity for all children particularly during periods of rapid growth. Once again, we are reminded about a viewpoint that centres on muscle health, function and participation.
Finally, dosage was another topic of conversation. I believe that it is important to be able to communicate the importance of dosage to children and their families to manage expectations. We know that running is a skill that athletes spend hours, days, months and years to develop and refine. Indeed, a 12 week program can help to develop the motor learning skills necessary for running but like with fitness training, you cannot simply train for a short period of time and expect the changes to continue to last without further investments.
Once again, we need to align the intervention and the dosage with goals. If developing a running pattern is the goal, then a time limited program would be indicated. However, if running speed and endurance are the major goals, then the dosage needs to be adjusted accordingly and these are important conversations to have.
Episode 14 (Loren West, Marissa Smith, Georgia Hoffman)
A ROUNDTABLE DISCUSSION WITH RESEARCHERS AND CLINICIANS
A special Q and A - in conjunction with families and parents
This is a unique podcast as we hit pause on our usual program to answer questions that families have been sending us. On the pod this week, we have Marissa Smith (Physiotherapist), Georgia Hoffman (Physiotherapist), Loren West (Occupational Therapist) and Dr Dayna Pool (Physiotherapist).
How we actually put all the knowledge into practice is a big and important question. Even if we have all the knowledge available, unless we know how we can implement research findings and recommendations into real life settings, the knowledge isn’t particularly useful!
Parents and children have great questions because ultimately, they want to be able to make informed decisions that enable the best possible outcome. This podcast is so important as we answer the most common questions that have been sent to us. Clearly, these questions are meaningful to families and this round table discussion of experienced health professionals provides the thought processes involved in making decisions that optimise outcomes by using the best available evidence.
The key is that individualised care is at the core - each person is different, with a different set of circumstances and goals. Making decisions should always be based on the best available evidence and as you’ll hear from our conversation - there is no such thing as a one size fits all but, there are some very clear considerations in developing the best possible therapy program and recommendations for care.
If we are evidence based, we are ultimately fulfilling our ethical obligations as health professionals in optimising care and minimising harm. This was made so incredibly clear in Professor Iona Novak and Professor Andrew Whitehouse’s podcast earlier in the season. So we hope you enjoy this special episode as the panel discusses the clinical decision making process within the best available evidence for the following questions:
- When do you wear AFOs and is it ok to take them off?
- What surgeries to muscles would you expect children with cerebral palsy would need?
- I have a wheelchair and walking frame but I can’t bring them around everywhere. So sometimes the wheelchair is at home, a walker at school but he likes to crawl around at home. How do I strike the right balance?
- There are so many walkers out there. How do I choose a walker that is right for my child?
- How do I know what therapies to pick?
Episode 13 (Rachel Byrne)
COMPARING PARENT AND PROVIDER PRIORITIES IN DISCUSSIONS OF EARLY DETECTION AND INTERVENTION FOR INFANTS WITH AND AT RISK OF CEREBRAL PALSY.
Reflections on this paper (Dr Pool)
I absolutely love this paper. We often talk about the ‘what’ and the ‘why’ but sometimes the ‘how’ is missing. How we communicate with families is so important and clearly, this paper demonstrates the need for clear communication. I believe this paper empowers us as clinicians to be “honest, realistic, hopeful” and “don’t be too general”.
This paper also emphasises the type of conversations we need to have because ultimately, parents want the best for their child. They want to know what evidence-based motor interventions are available and they want to have “mutually satisfying discussions about early interventions that might be of most benefit to each particular patient with CP.”
I also think that individualisation, person centred care, family centred practice - all terms we are familiar with are brought to the forefront here. We know that family centred practice is the cornerstone of our practice and we know that developing goals with families are important. What goes hand in hand though is providing individualised information. This paper really got me thinking about how we provide individualised information. In this paper, parents said “don’t compare our child’s outcomes to others. Give predictions but leave room for hope that work and therapy can change this. Make sure you talk about plasticity, and potential development, what our child will do, not just what they won’t do.” There is such a need here to provide really specific information. Parents want to know this!
Remember what Professor Andrew Whitehouse said - we need to hold ourselves up to the same standard as medical care - we would expect this from oncology or diabetes. We would expect that when we see our health practitioners, that the most definitive and evidence based information is relayed to us. In turn, this gives us the confidence to know that we are in safe hands. If we don’t do this, it opens the door to finding information on the internet which is uncurated and may not be validated and this is dangerous. We can be really empowered by this piece of work and if we put families at the centre of all that we would do, then we can work together to get the best possible outcomes.
Episode 12 (Dr Sarah Reedman)
PARTICIPATION PREDICTORS FOR LEISURE-TIME PHYSICAL ACTIVITY INTERVENTION IN CHILDREN WITH CEREBRAL PALSY.
Reflections on this paper (Dr Pool)
What motivates you? What drives you? What is important to you? Why do you want to do this? Why should I do this?
I found myself thinking about these questions a lot. Finding out someone’s “motivational orientation” or “motivational profile” is actually such a simple thing that we determine in the people that we work with right now, that can make the biggest difference in our treatment outcomes.
I love that this paper brings to the forefront a line of thinking into our clinical practice.
Our profession is doing so much more now to align with the ICF-CY. We are increasingly understanding the interactions between body structure and function, activity and participation. We are understanding the environmental and contextual factors and now, we are putting some language and understanding into the domain of personal factors. What motivates someone to do something? Are they driven by an intrinsic need or are they more extrinsically motivated?
It actually doesn’t matter which of the two it is, it just matters that we, as clinicians find this out and then, develop an intervention that matches this profile. What are the consequences if we don’t do this? Well, it could lead to negative experiences and we know that negative experiences undermine our basic psychological needs. It undermines our relatedness, our need for competence and our need for autonomy. This ends up being a perpetuating cycle that takes us away from wellness and quality of life.
What happens if we do, do this?
Well, it provides the foundations of a great therapeutic relationship with our clients and patients. The alignment of therapeutic goals and approaches optimises outcomes. After all, it is their life and they will in the end, be the ones that will carry out our treatments consistently throughout their life when we are not there. Our investment into people is exactly that - what will build them? What will enable them to be the best version of themselves? Better health is a long term game.
I absolutely love the mantra of the “just right challenge”. We know that whilst this is integral to motor learning, it is also integral to self efficacy. We know this for ourselves - if we trying to get our fitness and health back (after a COVID-19 year that was 2020 where our routines may have been disrupted!) we don’t just jump back into where we left off! If you do, it probably isn’t all that inspiring. You just end up feeling like you have missed the mark and what is the point? But if you structure it by being honest and setting the challenge just right - you get the results and you get a sense of fulfilment that increases your confidence and encourages you to get up and try again.
It is no different when we are working with people with chronic conditions! There is no one size fits all. You can’t put people in a box. This whole paper just highlights the need for reflection and to really look into ourselves for the answers. We experience this all the time, so lets make sure we find out what those personal factors are in our ICF-CY model. It’s not just a side box that is optional to engage if you want to. It is foundational.
Reflections on this paper (M. Haddon)
This paper provides a lovely continuation of the conversation around participation in children with cerebral palsy following Episode 7 with Dr Claire Willis. Being the first randomised-controlled trial of its type, this research is an exciting step towards delivering interventions across all levels of the ICF and considering the multi-factoral contributors to participation. A great component of this paper is the use of a wait-list randomised controlled trial design, meaning that all children in the study receive the intervention. This is not only more fair for all of the children and families involved, but it also increases the pooling of results and the effective sample size.
The Self-Determination Theory (SDT) really underpinned the intervention, and Dr Reedman outlines how autonomy, competence and relatedness are required for intrinsic motivation. The intervention incorporated motivational interviewing, positive self-talk and verbal persuasion about capability to address components of SDT so that the child intrinsically wants to be physically active. This is a truly unique approach, as current physical activity interventions frequently depend on extrinsic motivation such as a reward for being physically active. Facilitating intrinsic motivation encourages the child to want to be physically active either because they enjoy it, because they want to get better at a particular task, or because of the social aspects of physical activity.
Excitingly, Dr Reedman found that these motivational and behavioural determinants of health behaviour do in fact predict participation. This can encourage clinicians to consider the child’s motivation and behaviour when approaching physical activity interventions.
I am so excited to see this work expand into wider populations of older and younger children who are functioning across all GMFCS levels.
This is such a novel intervention with initial results supporting the effectiveness of many approaches that clinicians can incorporate into their practice."
Episode 11 (Dr Belinda McLean)
SOMATOSENSORY DISCRIMINATION IMPAIRMENT IN CHILDREN WITH HEMIPLEGIC CEREBRAL PALSY AS MEASURED BY THE SENSE_ASSESS©KIDS
Reflections on this paper (Dr Pool)
Sensation - it is part of everything that we do. It is how we experience the world, enjoy the world, participate in the world and be included in the world! Yet, it really is incredible that this area has had such little attention. To consider that over 80% of school aged children with hemiplegic cerebral palsy or unilateral spastic cerebral palsy have impairments in one or more domains of somatosensory discrimination means that it is something we need to pay more attention to. In fact, if this is the case in hemiplegic cerebral palsy, the impact across all children with cerebral palsy must be more than we can currently quantify.
So what does this mean for us?
In this podcast, Belinda talks about how "the time is now." And it is true! Cerebral palsy is indeed a heterogeneous population and with these reported statistics, though in a relatively small sample - we probably need to approach our assessment and treatment strategies knowing that sensation impairment is more than likely. Again, it's not a time to get overwhelmed but it is a time to think about what this might mean to drive meaningful and lasting changes.
Lately we have been talking a lot about "hands off" approaches to support experience dependent neuroplasticity. Indeed, this is also true when we think about sensation. If our "hands on" approaches are being delivered to elicit a response or a reaction, it is likely that the experience of movement to complete a motor task is being disrupted. It makes sense doesn't it? If I am being facilitated for all of my movements, my cues to initiate the movements are going to be dependent on those familiar cues, which - is likely to be delayed considering that joint position sense is impaired in many children with cerebral palsy.
It all really does come back down to the principles of neuroplasticity and the active ingredients we know that contribute to this process. When looking at sensation - it just means we need to have that lens on. Are our children responding as we expect to our interventions? If not - perhaps we need to underpin our treatments and assumptions with some good solid assessment that will in turn, direct our strategies to be more tailored and therefore effective. This podcast is not just for occupational therapists - it is relevant for all health professionals as at some stage of our interactions, sensation is part of the assessment or treatment.
Episode 10 (Dr Magnus Påhlman)
AUTISM AND ATTENTION-DEFICIT/HYPERACTIVITY DISORDER IN CHILDREN WITH CEREBRAL PALSY: HIGH PREVALENCE RATES IN A POPULATION-BASED STUDY.
Reflections on this paper (Dr Pool)
This is such an interesting paper that provides a lot of food for thought! When I first read this, I must say I was quite taken back by the incidence of ASD, ADHD and ID in children with cerebral palsy.
Like with many of the papers we have been reviewing so far - you can see that it is all about starting a conversation that "lifts the lid" as Dr Pahlman says. Conversations are all we need to get started. I know it can seem overwhelming that there are so many things to be looking at and yes - if you decide to break everything down to all of its components it can easily become overwhelming.
The danger though of involving multiple teams for multiple areas just simply isn't practical and funding may be a major limitation. Beyond funding though, involving a team specifically for CP and another specifically for ASD could just cause so much confusion that the lack of cohesion would only be detrimental to the children and the families that we work with.
So what do we do right now? Well, we don't want to be alarmist and add yet another thing to the family's plate. But with these stats, I think we can put some real practical things in place and it begins with a conversation and acknowledgement of individual differences.
So where do we start? We already intuitively know and are probably already implementing some fundamental strategies like building in movement breaks, using visual scheduling and importantly, having a team approach so that we "put on the right glasses," Without oversimplying - this is a great place to start and we have experts in the field we can also ask and learn from. There are courses we can take and like with what we say to families regarding the importance of engaging in evidence based therapies - we also need to make sure we engage in training in an area or technique that is also backed by the latest evidence.
The Autism CRC's synthesis of the evidence is a great place for us to start. Lets be sure not to draw on techniques we might have heard of when we were training or go to the course we heard about on social media. Likewise, we need to make sure we spend our time and money on a course or on resources that are supported by the current state of evidence.
Clearly these stats tells us that we need to do this because you can't be working with children with cerebral palsy without considering the co-existence of ASD, ADHD or ID (though it might not be formally diagnosed as yet). So if you do feel overwhelmed by all this knowledge, my encouragement is to be grounded by the principles of what we know works! That is, be goal focused, activity and participation based through a strength based lens, family centred, context and task specific whislt encouraging child initiated movements. Our strategies though may need to be tailored - (individualised!) and a team approach is the glue that will bring it all together.
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. 🚀