Episode 49 (Associate Professor Mark Peterson)

PSYCHOLOGICAL MORBIDITY AMONG ADULTS WITH CEREBRAL PALSY AND SPINA BIFIDA

Reflections on this episode (Dr Pool)

There is just so much food for thought in this episode. We absolutely loved our conversation with Mark. We spoke a lot about the transition between childhood to adulthood and the fact that kids are cerebral palsy and spinal bifida do indeed grow up. The fact is, we need to be thinking about the future when we are working with children with cerebral palsy and spina bifida. We need to not just be thinking about their physical health but also their mental and psychological health. What is really clear is that there is a combination of a lack of understanding, resources and expertise when it comes to providing treatments and services for adults of cerebral palsy and spina bifida. 

The conversation today was enlightening which really opened up the topic about self-advocacy. We need to be teaching our children and their families how to advocate for themselves by developing a strong sense of self as well as the health support that they might need. This will be so important in enabling children and their families to access the services they need when they reach the adult medical system.  I loved how Mark said that we need to do more early and often. This is absolutely key when we're thinking about physical activity, muscle strengthening and participation. 

When we're thinking about the curve on a graph, we really are trying to increase the apex of that graph as early as possible, knowing that there is a natural decline in strength and fitness which will ultimately impact participation.   This whole terminology around premature sarcopenia needs to be in the forefront of our minds too when we are treating children of cerebral palsy whether they are GMFCS level 1 or 5. We know that there are deficits early on when it comes to muscle size and strength. The literature is very clear on this. If we are to prevent the onset of non-communicable diseases, this intervention needs to start early.   

This episode was also very informative in learning about biostatistical models. Mark has a background in biostatistics and he was able to explain to us the concept of hazard ratios. It is very much worth listening to, to understand how these ratios are calculated, particularly when looking at large data.   

We are also very excited for the feature of the work that Mark is involved in. He revealed on the podcast today that he is working on the first clinical guidelines for adults with cerebral palsy - an  international collaboration of researchers and clinicians. In the meantime, while we wait for this next prefer piece of work, we can all do our part by supporting our children and their families with advocating for themselves and ensuring that we provide evidence-based treatments to improve muscle strength, fitness and participation as early as possible because this truly does have a profound effect across the lifespan.   

ENABLING VISIONS AND GROWING EXPECTATIONS (ENVISAGE): PARENT REVIEWERS' PERSPECTIVE OF A CO-DESIGNED PROGRAM TO SUPPORT PARENTS RAISING A CHILD WITH AN EARLY-ONSET NEURODEVELOPMENTAL DISABILITY

Reflections on this episode (Dr Pool)

This piece of research, amongst the larger body of work, represents where it is at! More and more, research is conducted with authentic partnerships with key stakeholders. This includes co-designing research such as selecting the most appropriate outcome measures to the strategies that could be used for integrated knowledge translation. When you look at the work that is ENVISAGE, you can see why it is so important that the right people are included because you can’t develop something unless you know it meets the needs of the people we are trying to support! 

On the other side of it, we also know that we have to close the gap between research and practice. Conducting research with authentic partnerships goes a long way in ensuring that the outcomes of research can be implemented straight away to help people now! So if you are thinking about conducting research or are in the early stages of developing your idea - this is a great example!   

I love the themes of the perspectives that were provided by parents. You really don’t need much more convincing that a program like this meets such a need for parents raising a child with an early-onset neurodevelopmental disability. The theme that really relates to us as clinicians is the final theme 6 “ENVISAGE is needed beyond us.” That is us - the health professionals! Parents spoke about their strong desire for professionals to use positive, strengths-based language and whilst that can seem really obvious, the execution of this can be really tricky.    

As health professionals, we have to adopt so many different communication styles don’t we? We need to be able to talk to our colleagues in an effective, succinct yet descriptive way. Think of all of our classification tools that we have spoken about in this podcast. In these conversations, we do need to be technical, specific and clear to ensure safe and effective handovers, no ambiguity with continuity of care being the focus. 

Then, we talk to or write reports for families. Here, we need to be descriptive, specific but need to avoid jargon and understand that parents really need us to use positive, strengths-based language. Going between these can be such a challenge - not just for a new graduate but for any health professional.   

We do need to always understand the audience of our reports or communication platforms. I firmly believe that the best way to evaluate if we are hitting the mark is simply to seek feedback. We need to be ok to follow up with families after we send reports to them and be open and brave enough to ask if it was ok? Did it make sense? Is there anything else we need to provide in there or do differently? This is another important facet of working with families with authentic partnerships in mind. It can make a really big difference and once again, soft skills in our practice are highlighted as an essential part of our practice.

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. 

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.   

https://healthymothers-healthyfamilies.com

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) 

https://www.jcu.edu.au/pahl 

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.