POWERED MOBILITY DEVICE USE AND DEVELOPMENTAL CHANGE OF YOUNG CHILDREN WITH CEREBRAL PALSY
Reflections on this episode (Dr Pool)
Mobility is a fundamental human right and is supported by the United Nations and the ON time mobility framework. The purpose of this study was to understand the effect of a powered mobility intervention on developmental changes in children with cerebral palsy.
In this randomised cross over clinical trial involving 24 children aged between 12 and 36 months, children received both the explorer mini and a modified ride on car in randomised order - each for 8 weeks. The Bayley Scales of Infant and Toddler Development (4th edition) was used at 3 time points.
The results indicated that regardless of device, low use was associated with no significant developmental change and that high use was associated with positive developmental changes. This highlights that mobility access is critical to maximise the development of children with CP and that this may be augmented by using powered mobility devices.
What a wonderful way to follow up from last week’s episode. Mobility is essential to development and I love how this research shows that there are positive developmental changes across the board from an intervention that offers mobility.
Once again, this supports the notion that offering mobility is vital to development and that having alternative ways of moving only enhances rather than removes.
ON TIME MOBILITY: ADVOCATING FOR MOBILITY EQUITY
Reflections on this episode (Dr Pool)
Mobility is a human right and with this in mind, this article proposed the ON Time Mobility framework - that is, for all children to have the right to be mobile throughout their development to explore, engage in relationships and develop agency to co-create their lives.
This perspective highlights interconnected principles of timing, urgency, multimodal, frequency and sociability to begin discussions on supporting the right to hours of active mobility each day for all children.
I would have to say, this paper is a must read for anyone in the paediatric arena. I can’t begin to tell you how many discussions I’ve had with people over the years where the concepts are essentially all written and discussed here. It is the perfect centrepiece to start really important and meaningful conversations with parents, families and colleagues.
To start with the line that “mobility is a human right,” is incredibly powerful. When children have physical impairments that delay motor development, it is imperative that we are mobilising all efforts to enable the child to still experience movement ON time because their social, cognitive and emotional development depends on it. This conversation is essential and continues to build on a strengths based approach. It not only encourages us to use all available mobility mediums on the market but also puts out a call for innovation.
Andrina and Heather are ever so passionate and I’m sure that this conversation will not only inspire you but it will also get you thinking deeply about your practices and where we as an industry can move forward together.
Brain activation changes following motor training in children with unilateral cerebral palsy: An fMRI study
Reflections on this episode (Dr Pool)
This study aimed to determine whether hand-arm bimanual intensive therapy including lower extremities (also known as HABIT-ILE) induces brain activation changes and whether these changes are related to functional changes observed after HABIT-ILE.
In a group of 25 children with unilateral spastic cerebral palsy who were assessed in manual dexterity and everyday activities before and after HABIT-ILE, the results indicated that brain activation changes were observed in a fronto-parietal network underlying motor skill learning with 2 patterns being observed which were likely related to different phases of motor learning, an increased practiced-dependent brain recruitment or a brain activation refinement by more efficient means.
I loved this discussion - it brought out so many important points that are really worth the time to ponder on. Firstly - we talk a lot about self initiated or self generated movement. We talk about this not to be combative but because of its importance from the perspective of motor planning. It makes sense though, right? We don’t just suddenly move when we want to do something - there is a process of planning - planning what to do, what muscles to engage so we can be successful.
I love that in this study, the fMRI demonstrates that the pre-motor cortex and the cerebellum are active before a movement! So if we want to see these lovely neuroplastic brain activation changes, then we also need to practice it that way too. It’s all about being task specific, in every single way. So we really need to get away from techniques that do too much handling or “hands on” approaches because essentially, our hands become the tools that initiate the movement. We as the handlers become the initiators, not the child! It has to be the child that initiates movement if the child is ever to learn to move on their own which is ultimately, what we want as therapists.
For sure - the dosage of HABIT-ILE is unattainable by most! We talked about this in the podcast and what I really got out of it is that it is so much more important that we are focused on the active ingredients rather than just the hours of therapy.
We could do 90 hours of therapy that are all therapist initiated, hands on but the outcome would be far inferior to just 10 hours of therapy but focused on the application of the modern principles of motor learning. If we do this, there is a greater opportunity for change than just focusing on the mere number of hours.
THE NDIS (NATIONAL DISABILITY INSURANCE SCHEME) AND EVIDENCE BASED PRACTICE.
A very special ResearchWorks episode as we speak with (Australian) Federal Minister Bill Shorten - the Minister for the National Disability Insurance Scheme (the NDIS).
The NDIS is a very unique Australian treasured, national health care service - there may be no other equivalent of it's kind in the world and though it has had it's share of critics, the NDIS is ever changing and adapting to the needs of Australian families - old and young alike.
The discussion over the NDIS and evidence based practices is at a crossroads and under the stewardship of Minister Bill Shorten, there is a galvanised effort to bring evidence based practices and research to the fore.
The Healthy Strides Foundation was proud to host the Minister as the Foundation is an unequivocal supporter of merging evidence and research into the clinical environment.
We hope you enjoy the mini-episode. It is exciting to note what the future holds for research and evidence fused clinical practices and how the NDIS fits into this model. A very nice blueprint that goes beyond the borders of Australia and is food for thought for every clinician and researcher throughout the developed world.
PERSUASION AND COMMUNICATION IN SPORT, EXERCISE AND PHYSICAL ACTIVITY
Reflections on this episode (Dr Pool)
How can we use persuasion methods to make people more physically active and improve their activity experiences?
Ben and his colleagues have unpacked the answer to this question and others in their book “ Persuasion and Communication in Sport, Exercise and Physical Activity. This is the first book to consider the application of persuasion frameworks within activity-related contexts, whilst summarising major developments related to communication topics in these settings.
There are many interesting topics covered in this book, which brings together experts from the fields of social, health and sport and exercise psychology, to discuss insights into research evidence and the practical implications of this work. There is obviously a lot to cover in this book, but today we‘re going to talk with Ben about a few major topics that we thought would be relevant to our listeners, and give some practical take home messages to implement into clinical practice!
So when we say the art of communication, perhaps we should be saying the science of communication! I think it is so comforting to know that there is a strong body of evidence to support good and bad communication skills. In particular, if we can understand the weapons of influence, we can be very intentional about how we communicate with children, families and even just science communication as a whole!
The weapons of influence which include liking, authority, scarcity, social proof, reciprocity and consistency can certainly be harnessed for good but I think it is also really important to understand how they can be used for less good reasons!
At the end of the day, parents are making decisions with their child’s best interest in mind. There are so many pressures that are unique to each person’s own circumstances, so bringing in rapport building and the “softer skills” is as vital as the clinical skills we bring into the scenario. It is so important to reflect on our conversations and the impact we think we might be having.
It takes a whole lot of honesty and a desire to learn and grow to be the best communicator we can. As we said in the pod, none of us have ever “arrived” but self reflection about the impact of our words and how we deliver it can never be underestimated.
EYE MOVEMENTS AND STRESS DURING EYE-TRACKING GAMING PERFORMANCE IN CHILDREN WITH DYSKINETIC CEREBRAL PALSY
Reflections on this episode (Dr Pool)
This study represents an important first step towards increased insights in the field of eye-tracking research in dyskinetic cerebral palsy which as a population is largely understudied.
This study aimed to explore eye movement and stress during eye-tracking gaming performance in children with dyskinetic cerebral palsy compared to typically developing children, and associations between eye-tracking performance, eye movements stress and participants’ characteristics.
In this cohort study with 12 children with dyskinetic CP aged 5 to 12 years and 23 typically developing children, participants played 10 eye-tracking games. The TobiiX3-120 and Tobii ProLab were used to record and analyse eye movements with stress assessed through heart rate variability.
The results indicated that children with dyskinetic CP took twice as long to perform the 10 games especially with those that were inexperienced, highlighting the importance of the early provision of eye tracking training opportunities.
For me as a clinician, this research is so important. It was incredible to see some of these preliminary results indicating that eye tracking is very feasible and effective for individuals with dyskinetic cerebral palsy. As Saranda described in her episode, without augmentative and alternative communication, individuals with dyskinetic cerebral palsy are “locked in”. It is imperative that this is explored and done far earlier than what is commonly done now.
Children as young as 3 years of age can use eye tracking effectively and as highlighted in this study, experience is key to increasing the ease and use of this form of interaction. The potential for less expensive technology is also on the horizon and I found Producer Ed’s question and comment very interesting.
It is an exciting road ahead, but in the meantime - introduce eye tracking early and be ready to expect the unexpected!
RELIABILITY AND VALIDITY OF THE YOUTH AND YOUNG-ADULT PARTICIPATION AND ENVIRONMENT MEASURE (Y-PEM): AN INITIAL EVALUATION
Reflections on this episode (Dr Pool)
We have spoken a lot about the value and importance of participation. For youth transitioning to adulthood, this period of change can be complex and challenging which can adversely affect quality of life. When we implement interventions with the intent of improving participation, we also need to have a reliable and valid means of measuring the change.
In this study, the team aimed to examine the psychometric properties and aspects of utility of Youth and Young Adult Participation and Environment Measure or the Y-PEM. Modelled off the PEM-CY that is the Participation and Environment Measure= Children and Youth, this measure focuses on youth and young adults aged 12-30 years.
This study describes that in young people with disabilities, lower levels of frequency and involvement across home, school, educational, community and workplace were noted. In addition to this, the initial psychometric properties are promising, supporting the feasibility of this self-reported questionnaire for youth and young adults.
It is so wonderful to have a self-reported questionnaire so that the true insights from youth and young adults can be appreciated. As a measurement tool, this clearly ticks a lot of the boxes from a psychometric property perspective. As a coaching and goal setting tool, I think this is where this measurement will have significant impact.
For example, to begin conversations from 12 years of age about employment is so vital to enable a young person to really start thinking about their future and about what they want. Our role as clinicians and researchers from here is to start the preparations and break down the barriers that we know may be inevitably ahead of them.
This measurement will soon be made available through the CanChild website - so do take a look. I know I will be incorporating this measurement in my clinical practice and as a research outcome measure.
FINANCIAL COST AND QUALITY OF LIFE OF PATIENTS WITH SPINAL MUSCULAR ATROPHY IDENTIFIED BY SYMPTOMS OR NEWBORN SCREENING
Reflections on this episode (Dr Pool)
Spinal Muscular Atrophy is the most common genetic cause of infant mortality, with an incidence of approximately 1 in 10,000 live births. With the introduction of 3 drugs approved for use in SMA, we have started to observe improvements in functional capacity and quality of life. However, these drugs are very expensive.
This study analysed disease-related costs and health-related Quality of Life in 3 broad categories of patients with Spinal Muscular Atrophy: untreated symptomatic patients, treated symptomatic patients who were diagnosed because of the onset of symptoms and then treated and patients not identified by symptoms who were identified from early testing.
The study found that patients not identified by symptoms had better motor development, better quality of life and much lower disease costs than treated symptomatic patients.
So, if you are a student studying for your medical exams, listen to this podcast! If you are a clinician whether a therapist, GP, child health nurse, neurologist or paediatrician working with children with developmental disorders or specifically SMA, listen to this podcast!
This episode is vital if you want to know about the latest in the rapidly growing area of knowledge that is SMA. In this episode, we not only cover the different types of SMA, but also the incidence, the diagnostic procedures, the latest in the three approved treatments, expected outcomes, cost, quality of life and of course, the role of therapeutic interventions that can be provided by allied health therapists.
It is so reassuring that the principles we have been learning so far are being continually reinforced, that is the value of participation and the F-words to frame our thinking and approach. It is ever so relevant here and considering the neuroprogressive nature of SMA, it is even more important that we think broadly about all of the aspects that cover the F-words so that we can promote healthy and sustainable recommendations that promote the best quality of life possible for the child and their family.
A NOVEL VOCABULARY INTERVENTION FOR POOR COMPREHENDERS: A SINGLE CASE STUDY
Reflections on this episode (Dr Pool)
Poor comprehenders have difficulty with reading comprehension despite adequate word reading accuracy and fluency. With weaknesses having been identified with lower level vocabulary and grammar skills and higher level language skills, speech pathologists need to be able to tailor their interventions to meet specific individual needs. There is however a lack of research on interventions for poor comprehenders.
In this case study, the team aimed to explore a pilot 8 week novel vocabulary intervention on improving word knowledge and if gains generalised to reading comprehension. With improvements having been noted, the outcomes of this study have some important implications on current clinical work and future research.
If you are a speech pathologist - you will love this episode as Katrina brings a wealth of her clinical experience into this space. She has some wonderful practical components that can be brought straight into your practice. If you are not a speech pathologist - this is still a very important topic because it is highly likely that you will come across a child with poor comprehension in your clinical practice. It is vital that we can direct accordingly to ensure that the child doesn’t fall further behind their peers.
I love that we can explore the different levels of research based on the hierarchy of evidence. The fact is, some areas have had more time to advance and push forward so we are at the place where systematic reviews need to be done.
There are, however, other areas where there is a dearth of evidence and it is so great that clinical researchers have answered the call and are putting forward their work to be shared with others. This is where it starts but this case study has some features in it that distinguish it from just a descriptive note. There are still controls and outcome measures and this is what makes it so translatable to our practice. We look forward to seeing more in this space!
The ResearchWorks Podcast
Recorded at the RW Studio at the Healthy Strides Foundation, East Victoria Park, WA 6101, Australia
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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. 🚀
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