REFRAME THE BEHAVIOUR: EVALUATION OF A TRAINING INTERVENTION TO INCREASE CAPACITY IN MANAGING DETAINED YOUTH WITH FETAL ALCOHOL SPECTRUM DISORDER AND NEURODEVELOPMENTAL IMPAIRMENTS
Reflections on this episode (Dr Pool)
I am sure that as soon as you listen to this podcast, you will walk away with a much greater understanding of Fetal Alcohol Spectrum Disorder (FASD) and neurodevelopmental impairments. It is absolutely astounding that there is such a high prevalence of FASD in our juvenile detention centres. What is devastating is that individuals with FASD or those that present with neurodevelopmental impairments can live through childhood without early detection and support.
What is often misunderstood as bad behaviour is actually a neurodevelopmental disorder and can lead to inadequate support during childhood. This is an excellent example of authentic engagement with key stakeholders. Reframe training was developed following extensive consultation within the workforce.
With 109 custodial workforce staff members completing pre and post intervention surveys, the result was the development of a training package that met the needs of detention centre workers. This optimised opportunities to promote practice changes on the most appropriate management of young people with FASD or NDI. The training package has many applications and I’m sure that once you listen to this podcast you will feel the same! I love Table 2 and the description of the 10 neurodevelopmental impairments from a functional perspective.
I highly encourage you to have a look at this as it may give you some great language around describing neurodevelopmental impairments in the young children that you may work with.
THE NEUROLOGICAL HAND DEFORMITY CLASSIFICATION: CONSTRUCT VALIDITY, TEST-RETEST AND INTER-RATER RELIABILITY
Reflections on this episode (Dr Pool)
It is so important that researchers work so hard to develop classification tools for applications in clinical practice. Classifications are not assessments but they provide us with a valuable communication tool and a starting point for developing an assessment and treatment pathway.
The Neurological Hand Deformity Classification tool is simple and clinically relevant for understanding a child’s presentation at the level of body structure and function. There is no need for complex equipment and it can be carried out within a busy clinical environment or the home and community environment. The tool facilitates a therapist to home in on the possible limiting factors that can influence function and the construct validity work is a vital piece to ensure clinical relevance.
What I loved about our conversation with Simon was that we shouldn’t ever be limiting what children can do based on their body structure and function impairments. Assessments and classification tools inform us of contributing factors to function and provide possibilities or intervention pathways.
At the end of the day, children and their families want function and it is our role to find a way to make it happen. Our role is to take a step back and find solutions and a forward looking approach so that we can do the best by each child.
In the instance of supporting wrist and hand positioning - we know that if there is limited active and passive wrist movement, an upper limb orthoses applied overnight for a long sustained stretch may have a better functional outcome. However, for children that have more active wrist movement, orthoses that enable more active movement may support a better functional outcome.
I love that this classification tool helps with our clinical reasoning to support function and the tools available through the website are just wonderful for any working clinician.
SPORTS STARS: A PRACTITIONER-LED, PEER-GROUP SPORTS INTERVENTION FOR AMBULANT CHILDREN WITH CEREBRAL PALSY. ACTIVITY AND PARTICIPATION OUTCOMES OF A RANDOMISED CONTROLLED TRIAL
Reflections on this episode (Dr Pool)
This is a wonderful paper that highlights the importance of building the bridge between therapy and community sport. The focus of a lot of therapies are to develop activity competence and performance. As such, a skills based approach is very common and makes complete sense.
What also makes complete sense is ensuring that we develop interventions that align with the Physical Activity Competencies that are adopted within the school environment. This means that learning the rules of the game, being able to play with others and also having the confidence to be part of a team based sport is so essential. This is where Sports Stars comes in - a low dose and effective intervention that promotes participation in community based activities.
Ultimately, this is what we want - for children to be able to confidently participate in situations outside of therapy. The results support the task specific nature of this intervention and as expected, there were no significant improvements in fitness based outcome measures, but there were meaningful outcomes when it came to promoting participation in sport. Georgina even gave us some hot off the press results with incredible 3 year outcomes in the COPM.
For therapists advocating for resources and services to be funded under the NDIS for children with neurodevelopmental impairments - this is the paper to go to. It is value for money, effective and beneficial.
PEER MENTOR TRAINING: PATHWAY TO COMPETENCY FOR FACILITATORS OF HEALTHY MOTHERS HEALTHY FAMILIES WORKSHOPS
Reflections on this episode (Dr Pool)
This paper is certainly a must read for all clinicians working in child health. No matter what diagnosis you are working with, the literature is clear that there are layers of stress our families face in their day to day.
For many of us working in the community - we are a part of their world and this in itself can be very enriching but can also pose additional stress and challenge for already busy family schedules. I love how Helen describes in the paper the “pressure cooker” of issues that create unrelenting and extreme stress. It is so true isn’t it?
As I reflect on my practice and recall my practice over the years, I think of all the recommendations I have made. Did I provide the latest information so that families can make an informed decision? Did I provide the right advice at that particular time for the family? It is just so vital that we are always mindful of the impact of our advice and recommendations on our families.
The conversation with Helen was enlightening, encouraging and inspiring. We largely focused on mothers, though relevant for fathers as well. The topic of identity, maternal health and well-being and of course, the all important - what do we do about it? Healthy Mothers Healthy Families says it all. More than just a support group, it is peer mentorship that has structure and support around it to ensure that a safe space is created for parents of children with disabilities.
My hope is that this podcast will provide a gateway for us as clinicians to speak to our families about other experiences and to offer support in an authentic and meaningful way. The competency training is also wonderful and provides such a great framework for developing a person’s communication skills to support group workshops.
As I said in the podcast, this can be applied beyond the context of the workshop setting and can be a great self reflection tool for ourselves. If we are really honest - what areas can we work on to improve our communication skills?
Where can I get additional support?
Who are my mentors and role models?
We call these “soft skills” which has the danger of downplaying an important skill that we all need to continually develop. With a greater emphasis on these skills, we can better support the families that we work with.
MULTIPLE DOSES OF UMBILICAL CORD BLOOD CELLS IMPROVE LONG-TERM BRAIN INJURY IN THE NEONATAL RAT
Reflections on this episode (Dr Pool)
Umbilical cord blood and stem cell therapy has frequently been a topic of discussion amongst my colleagues and families that I work with. I have to admit, there has been a lot of mystery surrounding this - what is the current state of the evidence?
Is it the answer we have all been looking for?
Where and how can families access this treatment?
This is the reason why I loved this discussion with Tayla. Her pre-clinical work in the use of umbilical cord blood in rats describes the cutting edge research of scientists that are actively exploring the parameters of treatment.
In this piece of work, Tayla and her team identified that multiple doses of umbilical cord blood compared to a single dose was important to modulate neuroinflammation, decrease cerebral tissue damage and improve behavioural outcomes, aligning with the stages of injury following an hypoxic ischaemic brain injury. Though this work isn’t yet available for human babies, it does provide some important indications on where this work could take us.
I think it is important for allied health clinicians currently working in the field to be able to provide families with an idea of where the current science is at. This is so important if we are to combat the misinformation and unfounded claims that have been circulating on the use of stem cells. The fact is, we’re not quite there yet for human applications but the work is most certainly being done. There is a lot of hope and potential for this treatment and rigorous scientific studies are essential to ensure it is safe and effective.
THE SCIENCE OF PERSUASION AND COMMUNICATION
Reflections on this episode (Dr Pool)
When it comes to communication, crafting messages, harnessing the power of people and providing support around healthy living through health promotional strategies, it is important to understand that there is a whole body of work and science behind motivation.
Evidence tells us that those services/programs/initiatives are only useful if people adhere to and engage with them. A wonderful example of this is the work that has been done by PAHL (Psychology of Active Healthy Living)
The science and research PAHL undertakes is around understanding what helps or stops people from engaging in health promotion initiatives. For example, losing weight, eating better, being more physically active.
PAHL’s work is in the development and delivery of the health promotion initiatives, underpinned by Ben and his team’s understanding of motivation, communication and persuasion, social support and resilience/dealing with setbacks.
So what we talked about with Ben in this episode is the science of persuasion and communication. There are some fantastic key takeaways that we can incorporate into the way we, as clinicians, communicate information, the evidence for why we do what we do along with the careful guidance we provide for families that we work with.
THE EXPERIENCE OF LOCOMOTOR TRAINING FROM THE PERSPECTIVES OF THERAPISTS AND PARENTS OF CHILDREN WITH CEREBRAL PALSY
Reflections on this episode (Dr Pool)
This study aimed to explore the experiences of intensive locomotor training from the perspective of therapists and parents of children with cerebral palsy.
This qualitative study used semi-structured interviews in five therapists and seven parents of children with CP (GMFCS levels III, IV and V). All the therapists were involved in providing the locomotor training program and all of the parents were of children who had completed a 6 week program at a paediatric tertiary hospital.
The data were analyzed thematically, systematically coding and interpreted by grouping information into themes and sub-theme categories.
The experiences of locomotor training were described with relation to the suitability of locomotor training with sub-themes of intervention length and time, engagement within sessions, the importance of support, and the utility of locomotor training beyond a research context. Motivation of participating was described as well as the barriers and facilitators to participating. Outcomes from the intervention were related to improvements in physical health, sleep, affect and emotion and ambulation in daily activities.
For us, it was so valuable to understand the perspectives of therapists and parents in delivering an intensive intervention. Qualitative studies provide the best opportunity to explore these perspectives and provide a basis for developing future interventions. My takeaway from this paper is that outcomes of our interventions need to measure other important areas like sleep and quality of life.
Once again, the power of co-design comes to mind as we really shouldn’t be designing interventions unless we have involvement of the consumers as well as the providers of the intervention if we are to ensure sustainability beyond a research study.
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