Professor Elizabeth Elliott:
Welcome, everyone, to the webinar sponsored by the FASD Hub.
We've just put up a little audience poll and I'd just like you to answer that. Just let us know which of the following best describes you. Are you a researcher? A student? A medical professional? An allied health professional? Someone working for a service provider? Someone working for government or an educator? So, it'd be great if you could complete that little poll for us.
My name is Elizabeth Elliott. I'm the chair of the advisory group of the FASD Hub Australia and also the co-director with Carol Bower of the NHMRC Centre for Research Excellence in Fetal Alcohol Spectrum Disorder.
Before we start the webinar, I'd like to acknowledge the traditional owners of the many lands on which we meet. I'm on the Gadigal land of the Eora Nation in Sydney. And I'd like to pay my respects to the elders past, present and future of this and the other lands on which we meet.
Today, we're going to hear four research presentations which have been selected from those submitted based on their potential impact.
I want to remind the audience that we will be having a panel at the end where you'll have the opportunity to ask questions. So, do submit those via the Q&A rather than the chat option on your screen. We will also have the opportunity for a few questions at the end of each presentation. So, each presentation will be 15 minutes with a 20-minute panel discussion at the end.
Natalie, do we have the results of the poll yet? Okay.
So, about 19% researchers, 12% undergraduates, 12% medical professionals, 31% allied health professionals including psychologists, OT speech, pathologists, social workers, et cetera. So, welcome. That's a big group. And people working in government departments. So, really welcome everyone. It's great to have you on board.
So, now we're going to move to the first presentation. And the first presentation is the Jandu Yani U Project. And that's being presented by Ellaina Anderson and Cari Mcllduff. And I'm just finding their CVs here as we speak.
So, Ellaina is a paediatric clinical neuro-psychology registrar working with children with developmental disabilities in research and clinical capacities, currently in the Central Queensland region. She provides developmental diagnostic assessments to children aged naught to eight, including investigations or assessments for FASD.
In addition to clinical work, she's got a longstanding passion for research and she's previously worked as a research officer at the University of Sydney and in association with the CRE, and in particular, on the Sherbert Project in Queensland and the Jandu Yani U or positive parenting project in Fitzroy Crossing in Western Australia.
Dr. Cari Mcllduff is visiting us from Canada. She's a research fellow at the Morning Star Lodge at the University of Saskatchewan. Cari obtained her bachelor's degree in psychology in Canada. And with the support of the Terry Fox Humanitarian Ward, has worked in early childhood intervention for many years. She completed her PhD at the school of psychology at the University of Queensland and that was exploring best practice methods and cultural safety and working with Indigenous people. And Cari was one of the leads on the Jandu Yani U project.
So we're now going to hear from Cari and Ellaina together on the Jandu Yani Project for all families. Thank you.
[View Ellaina and Cari’s presentation here]
Ellaina Anderson:
Okay. Hopefully that's sharing successfully. It's always a bit nerve-wracking being number one.
Thank you so much, Liz, for that introduction, like she said, I'm Ellaina and my co presenter is Cari and we are going to be talking about the Jandu Yani U Project.
Of course, we would like to acknowledge the traditional owners of the lands on which we are meeting which is many given our virtual setting and pay our respects to elders past, present and emerging.
So this was a fantastic project that happened out in the Kimberley region of Western Australia. And we would like to acknowledge all of the participants and the researchers who are part of this project who are listed on the front screen here.
So the Jandu Yani U project which means for all family has been in the works for several years now. And its inception was actually nearly a decade in the making with the elders and the community recognising that in Fitzroy Valley, they were really concerned about the role and impact of alcohol and what it was having, the effects it was having on their children and how they were growing up and their ability to think and learn and to carry on the stories of their culture and pass them down to their own kids.
And from those concerns that community advocated for research to happen, which was the Lililwan project. And in that project, which was the first FASD prevalence study to happen in Australia, they found that in that community 19% of children received a diagnosis of fetal alcohol spectrum disorder.
And to put this into context in Australia the general population estimate for FASD is about two to 5%. So 19% was one of the highest prevalence rates in the world.
And because of it, the community wanted to advocate for support for these children and all of the children in their community who were struggling with more challenging behaviours, were having difficulty engaging at school, were becoming a little bit more, having contact with the justice system.
And the only way to do this effectively it was, acknowledged was through early intervention. And that's where the Jandu Yani U project came in.
So the Jandu project really had three key aims. The first, to train up local area professionals in a parenting intervention or strategy intervention that would allow them to help families in their community. And this really acknowledged that for long lasting sustainable change to happen it would have to be local area professionals and community members who were leading that change. And who were the ones who were delivering the intervention.
The second main aim of this project was of course to empower the families and the carers and the parents of these kids with skills and confidence that would mean that they felt comfortable supporting their kids and feeling like they could grow them up well.
And then of course, the final objective and our ultimate aim was to reduce these challenging behaviours of kids in the Fitzroy Valley.
And the way that we did this really had two key components. The first being the training of local area professionals in a specific intervention which I'll talk about on the next slide. And this happened over a couple of years with a few different training programs.
And then the second key component was the actual rollout of the intervention where our local area professionals who were named parent coaches would then actually deliver the intervention in the Fitzroy Valley, providing strategies and tools for parents to use in their own home to support their kids.
So, as you can see, the timeline kind of happened over from 2014 right at the beginning where we sought advice from the community to provide an intervention that was appropriate and culturally relevant all the way to 2019, where we returned to the community to actually provide the results of this study and let our participants know what the outcome was.
And like I mentioned, the use of an intervention in this project, we used the Indigenous Triple P program which is the Positive Parenting Program from University of Queensland. Now this program has several different levels of intervention that can be used. We focused mainly on level four which is broad parenting strategies that can be provided in a group setting, but even then we had to acknowledge that for this community modifications have to be made, so it was appropriate and relevant to our participants. These included changing the language level, incorporating different ways of- traditional ways of talking and storytelling, changing the project or the program delivery to be a bit more flexible and to increase its length of time. And then also producing resources that were localised, so they actually reflected the community and the people that were receiving the program.
So that's a brief overview of what we did and I'm going to let Cari now talk about the outcomes of what we found.
Dr Cari Mcllduff:
Thanks, Ellaina.
So essentially 37 parent coaches were trained over the two different trainings that we did in Fitzroy, in the Fitzroy Valley. Three of whom were men, very exciting. Approximately 37% of the workforce in the Fitzroy Valley across 16 different local organisations, 65% of whom were Indigenous.
And at the end of the project, Ellaina just showed you the timeline, at the end of the project only 22 parent coaches were still living in the community. So 19 of the 22 that were still living in community were the Indigenous workforce. So indicating obviously the significant need to build that community capacity by training up the local workforce.
However, also we are very mindful and still are mindful that many of those that are able to work in these communities are already overburdened and burnout rates are really high as they're not just dealing with this at work but also often within their own families.
When we asked for feedback from the parent coaches a huge praise was that they had never seen an initiative that had so many organisations at the table or have buy-in to a program that helps a community.
There was a 100% accreditation rate and I'm actually going to talk about that more in this slide because you can see that pre-training, post-training and then accreditation their confidence to work with families and to provide support for families significantly increased from pre-training to post-training and then again at accreditation.
So this is really significant because actually these are two of the first groups that were trained in Indigenous communities that we know of that had absolutely no dropout rate between post training and accreditation. So it's unheard of.
A big success rate there was primarily our peer support groups that were led by the community. The community said, this is what we need. And we followed through with that.
They occurred directly after training to support the parent coaches in their preparation for accreditation on a weekly basis. And they built relationships within those parent coach groups.
So when we talk to the community about what empowerment looks like and how we were going to measure that, they talked a lot about having a voice. And you can see here, their feelings of having a voice or empowerment significantly increased all across the board in their workplaces, in their communities and in their homes, which is a huge, just a huge show of how successful the training was.
So our family and child outcomes - these are the fun ones that we're very excited about. So between the four years that we did the project out in the Valley, 530 families were talked to about at least three strategies within their communities. 37 parent coaches talked to 530 parents, which is insane. The ripple effect of that is just amazing. And I could see it in the- on the football field when I was there. So of the parents and family members, 68 completed the entire program and 80 families in the Fitzroy Valley had requested the program by the end of our project.
So you can see here, there's a significant decrease in behavioural concerns and a significant increase in pro-social behaviours. So the frequency and intensity of the kids’ behaviours had significantly decreased but also there was a significant decrease in the number of problem behaviours that each kid was having.
So with our parent outcomes, these are very exciting for me. There- obviously our parents were primarily mothers. This happens a lot in parenting and, and grandmothers and family carers and one dad.
I was just given one minute to go so I'm going to speed it up.
So the parents’ self-efficacy increased. The decrease in negative parenting styles, I'm going to go into this a little bit. There was a decrease in permissive and inconsistent discipline, over-reactivity, which is acting out of anger or coercive discipline, and hostility, so the use of verbal or physical force. All of these decreased but over-reactivity and hostility were significant changes.
So also you'll notice that there's a significant decrease within their mental health concerns. Stress decreased, anxiety decreased and their depression decreased. And I just want to call to attention the fact that at time three it continued to decrease and that was six month follow up. And I can tell you having been in community the three months, three months prior to the time three collection were very stressful. There were high amounts of loss.
And just the idea that we were able to still significantly decrease that depression, anxiety, and stress state lower is significant.
So these are a few of the quotes, we're going to speed past those. They're very exciting.
And then our learning outcomes. So community led this project as Ellaina referred to which made it a huge success. It was community-driven so there's huge buy-in.
Within the workforce development, the Indigenous parent coaches knew the families and their circumstances and spoke very openly about the impact of stress and trauma and the struggle to not parent the same way their parents did due to stolen generation legacy. This was a beautiful thing about the flexibility of locals teaching other locals. Also, along with the three or four that we have on the screen here, I've worked personally with Triple P to develop a program aimed to support families dealing with toxic stress and or trauma. So that is a big piece that has also come out of this that the community taught us that was needed.
Ellaina Anderson:
Yeah. And I suppose - thank you, Cari. And I suppose just to summarise all of those fantastic outcomes they do sometimes come with a few challenges, in particular the fact that Cari had to be part of this community for such a long time to help provide the peer support. So having the initiation and the initial steps of setting up a program like this is quite labour intensive and has quite high costs in the initial outset. And that really has to, you know, is definitely outweighed by the outcomes and the positive stories that we're receiving but I think for these to be generalised to other settings it does have to be acknowledged that that initial outlay of time and building relationships that have been built over the last decade really needs to go in first before such successful outcomes can occur. So while we are really excited by how this project has gone, we do really acknowledge how much work had to go into it years beforehand for it to be as successful as it was.
I'll leave it there because I think we're getting ready to move on but thank you so much.
Professor Elizabeth Elliott:
Thank you both very much. Now that's an interesting presentation.
I do have some questions that have been submitted for you, perhaps Cari, how were the 530 parents and family members identified and what information were they provided about the program?
Dr Cari Mcllduff:
Yeah, really good question.
I interviewed every single parent coach at the end of the program and talked to them and well, I was there the entire time. So we talked a lot about, who are you talking to in the community? What are you using your skills for? Where are you using your skills? And they all estimated between 20, the lowest person that had estimated how many people they had talked to about at least three strategies that they thought were useful in a certain situation, the least was 20 and the most was 67 just because of the community.
Professor Elizabeth Elliott:
So they all integrated really into their local communities and families.
Now I have a second question that's been submitted and that was what proportion, you may have said this, what proportion of the Fitzroy population do you estimate would have been exposed to Triple P through the program?
Dr Cari Mcllduff:
Also a really good question.
We haven't looked at the percentage but having been out in community for so long, I would say at least 90% of the population either knows about Triple P or has learned some of the strategies.
Ellaina Anderson:
Yeah. The ubiquitous of their- Like all of our parent coaches were so proud like they all wore their shirts out in community. Like, you know, you would see them walking down to the shops and everyone would know that that was the Jandu Yani U mob and that was- so I think over the time that we were there from 2014 to 2019 most of the local community were quite familiar with it, “yeah, okay, they're part of this crew, this is what they're talking about.”
That was a fairly ubiquitous thing, I think towards the end.
Professor Elizabeth Elliott:
Great. Well look, thank you both very much.
Ellaina, I know you've got to go and see a patient but we'll see Cari again for the panel discussion.
I might like to remind you, might just remind everyone, you can submit questions through the Q&A function. And also we will want you to vote at the end for your people's choice in presentations. How clear was the presentation, how significant was the work and what sort of impact do you think it might have?
So we're now saying goodbye to you two and move on to the next presentation.
The next presentation is by Grace Tan. Grace is a registered provisional psychologist who's nearly finishing her combined PhD/Master's in clinical neurology at the University of Western Australia, supervised by Professor Carmela Pestell and Adjunct Professor James Fitzpatrick, Martyn Symons, and Donna Cross. Grace's PhD is focusing on investigating the relationship between FASD, adverse childhood experiences, and offending behaviour in the clinical population. So Grace, I'll invite you now to share your screen with us, please.
[View Grace's presentation here]
Grace Tan:
Thanks Liz, for the introduction.
Before I begin, I would like to also thank members of our Aboriginal committee reference group for providing their input on the project in matters of community and cultural relevance.
So I'll start off by introducing what adverse childhood experiences are, also known as ACEs.
I'll also talk about its prevalence in Australia and the link between FASD and ACEs before I move to my study.
So what are ACEs? ACEs are traumatic events that range from abuse, neglect to household dysfunctions like parental separation, parental mental illness, domestic violence, household substance abuse, and parental incarceration.
And in Australia between 2017 and 2018 about 159,000 children aged zero to 17 received child protection services. And this equates to a rate of 28.7 per 1000 children. The most criminally reported ACEs were emotional abuse followed by neglect, physical abuse and sexual abuse.
It was also found that girls were more likely to be the subject of sexual abuse than boys, while boys were- had slightly higher percentages of substantiation for neglect and physical abuse. Children from very remote areas had the highest rates of ACEs reported and were four times as likely as children from major cities to be the subject of a substantiation.
So how is FASD related to ACEs? Numerous studies shows that children with FASD often come from dysfunctional families and have mothers who are unemployed and have substance abuse and mental health problems. So the environment that these children live in, put them at heightened risk of exposure to ACEs over their lifespan. Additionally, it's not uncommon for children with FASD to also have parents who will have experienced ACEs themselves. So there's often a cycle of trauma in a family and when interventions are not targeted to address this the vicious cycle is likely to maintain.
Information on ACEs can be gathered by clinical interview or through a questionnaire. Our study used a modified version of the ACEs questionnaire that looks at 10 types of early life adversity, such as the ones listed here. Some of the questions include, while you were growing up during the first 18 years of life, did a parent or other adult in the household often swear at you, insult you, put you down or humiliate you?
Numerous past studies have explored the relationship between prenatal alcohol exposure and early life trauma but research looking at the relationship between ACEs and FASD is still in its infancy. Children and youth with FASD have often been neglected in terms of adequate diagnosis and research attention within Australia.
My study is the first to provide a unique insight into the types and frequency of ACEs in an Australian FASD sample. The aim of the study is threefold, but due to time constraints, I'll only be discussing the first aim. Specifically comparing ACEs and associated stresses in individuals with and without FASD.
It's also worth mentioning that the study was in collaboration with Dr. Larry Bird from the North Dakota FASD Centre in the United States. In terms of demographics, the FASD cohort came from Patches while the non-FASD individuals came from the North Dakota FASD Centre, as we weren't able to recruit any non-FASD participants due to the COVID-19 pandemic. This is a really important implementation to acknowledge. And given there may be differences in the ACEs due to cultural backgrounds.
There are a total of 211 participants in the FASD cohort with mean age of 11.12. Participants' ages range from as young as two to 21-years-old. And consistent with results from numerous published studies, the majority of the FASD cohort were males and of Aboriginal descent. Most of them also came from regional or remote parts of WA.
Individuals in the non-FASD cohort were identified as appropriate for referral for a FASD assessment but were not diagnosed with FASD in the end. And the main age was 7.97. So, similar to the FASD cohort, most of the non-FASD participants were male but the percentages of Indigenous participants in the non-FASD group was significantly lower than the FASD cohort. And statistical analysis also showed that age and cultural backgrounds were significantly different between the groups.
To gather information about ACEs in the FASD group, participants’ files were reviewed retrospectively and the presence of nine ACEs in our data were coded against the ACEs questionnaire. And during coding of the data there was no missing information apart from participants’ parental marital status. So this was not captured in our database leaving only nine categories of ACEs. And additional life stresses such as the ones listed here that were not included in a 10 item ACEs questionnaire were gathered from the FASD diagnostic reports.
So as you can see, exposure to drinking and drug use was the most commonly reported ACEs by the FASD group in blue, followed by domestic violence, emotional neglect, physical neglect, physical abuse, parental incarceration, emotional abuse, suicide or mentally ill household member and sexual abuse.
And interestingly, we found FASD clients were less likely to report having a family member who was mentally ill or had previously attempted suicide possibly due to child protection involvement early on where children were removed from these families. We also found that clients with FASD were more likely to experience four or more ACEs compared to their non-FASD counterparts and only a small number of them not experienced with FASD reported not experiencing any ACEs compared to non-FASD participants.
In terms of other stresses in life, information on school engagement, living arrangements, bullying and traumatic brain injury was not available for the non-FASD groups. So we weren't able to make a comparison but we do have information on involvement with child protection and justice systems for both of the groups. As you can see, individuals with FASD were more likely to be in contact with child protection and the justice system than non-FASD participants.
So results of my study have a number of important implications. Firstly, findings from my study show that individuals with FASD were more likely to endorse four or more ACEs compared to non-FASD participants. And research shows that those who endorse four or more ACEs are at a higher risk of engaging in health risk behaviour, such as substance use and have chronic health problems such as heart disease and cancer later in life. So this really highlights the importance of early diagnosis of FASD to reduce the negative effects of ACEs.
Furthermore, individuals with FASD can display a range of challenging behaviour as a result of their neurodevelopmental impairments. So putting them at risk of physical and emotional violence and pose difficulties for parents, some of whom will have experienced ACEs themselves and find parenting a child with a range of deficits difficult. So this highlights the importance of timely interventions in this clinical population and the importance of providing support to parents of children with FASD.
In terms of other stresses, we find individuals with FASD had a much higher risk of being involved with child protection and the justice system compared to non-FASD participants. And as such, it's important to enhance access to FASD diagnostic assessment, healthcare services and culturally safe interventions for people with FASD. And these have also been identified as priority areas by the national FASD strategic action plan to help promote better outcomes in individuals with FASD.
We also identified possible criminogenic factors such as the ones listed here. So almost half of the FASD cohort reported disengagement from school. And this is particularly concerning given research has consistently showed that school disengagement is associated with offending behaviour. So this finding emphasises the importance of early FASD screening at schools to better identify learning needs and to promote school engagement in children with FASD. It's also crucial to implement interventions that reduce the risk of adolescents experiencing criminogenic factors to help break the cycle of recidivism.
So to our knowledge, my study is the first to provide initial evidence for the frequency and types of ACEs as well as other stresses experienced by individuals with FASD in Western Australia. We found individuals with FASD reported experiencing more ACEs than those without FASD and highlighted the importance of early identification and screening for FASD in high-risk populations to reduce the negative effects of ACEs and health risk behaviour.
We believe understanding the nature and frequency of ACEs in this clinical population is important because it can help inform interventions and offer recommendations about effective ways forward for individuals with FASD and families who are caring for a young person with FASD.
So we have actually submitted this study for publication and it's currently under review. If you're interested you will be able to learn more about the study once it gets published. Thank you for your attention.
Professor Elizabeth Elliott:
Thanks Grace, very much, for that clear presentation.
Now, I've had a couple of questions submitted to you. You've identified some differences in the comparison populations. How do you think the different samples, Patches or North Dakota. might impact your results? And did you consider comparing Patches cases with and without FASD?
Grace Tan:
Yeah, so that's a really good question. So we wanted to look at those without FASD in Western Australia, but we weren't able to collect any data because of the COVID-19 pandemic. So- and we don't have that information in the Patches database so we weren't able to make that comparison.
And we do acknowledge that there may be cultural differences in the types and frequency of ACEs endorsed by the North Dakota cohort.
And we have sort of clearly stated that in our study, in our manuscript as well, that that's a future research direction.
Professor Elizabeth Elliott:
Thanks. Now there's a second question submitted. This was a retrospective review of records. Did you have information on sexual abuse in all of these children and how did you manage that in a practical way when it was identified?
Grace Tan:
So information on sexual abuse and other types of trauma were gathered from the FASD diagnostic reports and other allied audit health medical reports, as well as, yeah. So these are the sources from where we got those information. So were not only relying on one source but multiple sources to gather information on whether someone was exposed to certain type of trauma. I hope that makes sense.
Professor Elizabeth Elliott:
Great. And one more question’s just come in. Could the non-FASD data be collected retrospectively?
Grace Tan:
Yes. If we- if we could identify those people in a database, but we do not keep track of those, unfortunately. So we would have to collect new data. Yeah.
Professor Elizabeth Elliott:
Okay. Thanks very much, Grace.
So I think we'll move on to the next presentation. Now, remember that all of these presentations will be available after this on the FASD Hub. And so you'll be able to listen to them again.
And also remember that we’re wanting you to tell us which is your favourite presentation, which is the most engaging? Which topic is most important? Which findings are most impactful? So now we'll move on to the third presentation.
And the third presentation is Emma. Just trying to find your CV, Emma. Emma Doherty. Emma is a project officer with population health in Hunter, New England at the local health district based in Newcastle in New South Wales. She's a PhD candidate - just about finished Emma, haven't you? With the University of Newcastle.
She has 13 years’ experience in public health, a strong interest in supporting healthcare settings to deliver care for behavioural risk factors. Her current work and her PhD focus is on a practice change intervention to improve antenatal care to address alcohol use during pregnancy and prevent the harms from prenatal alcohol exposure, including FASD.
So thank you, Emma.
[View Emma's presentation here]
Emma Doherty:
Hi everyone. Hopefully you can see my screen. Just yell out if you can't.
So, as Liz just mentioned, I'm going to talk to you today about a project that's currently underway here in the Hunter New England local health district in New South Wales that we're conducting in partnership with our maternity services. And the project is a practice change intervention that's looking to improve antenatal care addressing alcohol consumption during pregnancy. And I'm talking today on behalf of the investigators of this project.
So before I begin, I would like to acknowledge the traditional owners of the lands we're meeting on today.
The Awabakal people here in Newcastle, and I would like to pay my respects to elders past, present and emerging.
So as a quick background or rationale to the project, as you are probably all aware there are antenatal clinical guidelines that recommend that antenatal care providers routinely address alcohol consumption during pregnancy with all pregnant women, specifically, that all pregnant women have their alcohol consumption assessed. They're advised it's safest not to consume alcohol during pregnancy. And the potential risks of that consumption are explained to women. And for those women who might require support to abstain from alcohol consumption during pregnancy that they're referred to the appropriate services - but unfortunately currently in public maternity services the implementation of these guidelines is less than optimal.
So that leads us to our NHMRC project that's currently underway. And the aim of that project was to look at whether an implementation intervention can increase levels of antenatal care. So it's a step wedge trial design undertaken in three maternity services. One of the services is a metro-based service here in Newcastle that has about 5,000 births per year. And the two other services are regional-rural services that each have about a thousand births a year. And the implementation intervention that we put in place as part of the trial went for about seven months in each of these sites.
So we went through a staged process to develop the implementation intervention. First, we conducted surveys with antenatal clinicians and managers in these participating maternity services to seek out what the barriers to providing this care were. We then mapped those barriers to behaviour change techniques based on an implementation framework and reviewed the literature and consulted with experts to make sure the strategies that we were looking at had relevance for the maternity context. So this gave us a draft list of strategies. We then went and reviewed those strategies for cultural appropriateness through focus groups with Aboriginal women in each of the areas that this trial was going to roll out. We consulted with clinicians and managers in these services to check for feasibility of these strategies. And then that brought us to our final list of implementation strategies that were implemented as part of this trial.
So in all, there were seven implementation strategies.
The first strategy that was put in place was around leadership and management support in the maternity services. This sought to overcome barriers that clinicians were telling us that they had a lack of support for addressing alcohol consumption as part of their job from their manager, and that there's more important things to do in their visits.
What this looked like in practice is there were regular leadership meetings with maternity management throughout the trial. Managers really had a presence throughout the implementation. They attended all the training sessions. They sent out memos to their staff explaining the importance of this care and that it was expected of them. And they had KPIs in their performance plans as well.
So this check-in strategy was a local clinical practice guideline. Although there's state-based and national based guidelines, clinicians were saying to us, yeah, but how do I put this into place in my practice at John Hunter Hospital? So we came up with a clinical practice guideline with the services and that really tracked out for them in their day to day job, what to do, where to refer women, et cetera.
One of the biggest barriers that clinicians were saying was simply they were forgetting to do this in all the things that have to be done in an antenatal visit, alcohol was one that just slipped off the list. So to try and overcome this barrier, we made changes to eMaternity, which is the medical record system used by maternity services here in New South Wales. Prior to this intervention, their medical record system had one question about alcohol consumption and it was a yes, no response. Like does the woman drink? Yes, no. And that was it. You moved on to the next question.
So what we did is we put in the validated Audit-C assessments, which did an automation- automated calculation and gave risk categories and then prompted the care pathways based on those risk categories in the system.
To support this, we also came up with a number of- well, clinicians actually came up with a number of paper-based prompts for them to use in their clinic rooms. So this was a few things, like the effects of alcohol exposure chart that they could show women to help explain the effects throughout the whole of pregnancy. Stickers in the medical- in the hard-copy medical records, et cetera.
So as these were clinician strategies, clinicians actually rated these as the most influential of the prompts. And it was in recognition of adaption to context, as well as not all clinicians were using the electronic medical record at the point of care. The thought strategy was a local champion. And this was to address a lack of support from colleagues around alcohol consumption. And what this looked like for the implementation intervention was that a clinical midwife educator for seven months was present in the clinics, conducted training with staff and really provided any kind of proactive and reactive support to get this off the ground.
That's two of our clinical midwife educators in action there.
Fifth strategy was around training and education to address the barriers of a lack of knowledge and the lack of skill. So this included an online training module that was developed for all of New South Wales and put up on the training platform, a series of group and one-on-one sessions. And we were lucky to have Liz come up to all the services also and give an expert session on FASD.
Sixth strategy was around academic detailing. And so this was giving feedback to clinicians on how they were going with implementing the practice.
And the last strategy was around monitoring, and accountability, which where the KPIs in the managers’ reports that they were to- to monitor and report on.
So in terms of data collection for this implementation trial, so data collection finished last year and we completed almost 7,000 surveys with pregnant women who had attended one of our antenatal clinics. We asked those women about their alcohol consumption during pregnancy, and also asked them about their receipt of care from the maternity service. We also conducted surveys with clinicians after the implementation trial just to explore their barriers and facilitators and their exposure and acceptability of the intervention that was put in place.
So these are some of our prelim results and key findings.
So the data is being analysed, but the outcomes payback has yet to be submitted for this project but what I can say is there were around 20% absolute increases in pregnant women's reported receipt of assessment of alcohol consumption in there in their visits and care, so advice and referral, when it was required. We saw greater increases at the 28 and 36 week gestation visits. So prior to this trial being put in place, care booking in was a little bit higher but really nothing happened beyond walking in. So we saw an increase of women actually getting followed up and getting asked again, then given advice again, which was a great thing.
There was no differences between the metro and the rural sectors and services.
We asked all women after they told us that they've received the new model of care how acceptable that was to them. And 95 to 100% of women told us that it was acceptable or highly acceptable to receive that care in their antenatal visit from their provider.
From the clinician survey, also clinicians told us that they were actually exposed to all these strategies and that they were acceptable and helped them to put their model of care into practice. Then they rated the Clinical Midwife Educator as the most acceptable and most helpful strategy.
So looking at implications for behaviour change, one of the great things from this trial is we have about 7,000 women going through these fights every year. And these women are now receiving repeated consistent advice on alcohol consumption during pregnancy from their providers.
Another great thing is for those women who are disclosing that they're consuming alcohol during pregnancy to their providers, they're now being linked in with the appropriate level of support. So prior to this providers were telling us, we don't know what's out there. We don't know what's available. And we don't know what's the most appropriate service for her level of risk. So now that's all mapped out for them and that procedures in place and easy for them to put into action for the women.
And what we've seen with some of the data, some of the medical record data that's coming through, is that for those women, there are reductions in their levels of alcohol consumption during their pregnancy.
So just for some more information - and I can share this with anyone who wants - there's three papers that have been published from this trial. So the protocol, the paper around the barriers, and the baseline care receipt paper.
And that's it from me. Thank you.
Professor Elizabeth Elliott:
Thanks very much, Emma, for that clear presentation.
Now there have been a couple of questions submitted. First one is how transferable do you think this approach is likely to be in other settings and indeed for other risks? Could it easily be adapted to be used elsewhere?
Emma Doherty:
Yes. So actually since the end of this trial, we have since rolled out this model of care to all other services that exist within our LHD. And we did that with the existing resources, no extra budget from what we had from the trial like we did when we rolled out to the three services. So we used existing resources like the existing Clinical Midwifery Educator Group rolled out the training packages and it was highly successful. We saw similar rates of care from using that.
In terms of transferring it to other risk behaviours, we're currently doing that as well. We've currently just started an NHMRC trial that's using a very similar approach but for care for gestational weight gain. And also we've been working with our services around smoking.
Professor Elizabeth Elliott:
And what about transferability out of the local health district? So beyond Hunter New England.
Emma Doherty:
Yeah. So I think, I think our finding's showing that there were no differences between the major hospital that was within the LHD and the smaller services. So the smaller services were community-based, a lot of, a lot of often community-based services. I think it shows it's got quite high transferability outside of our LHD. I know other LHDs in New South Wales are picking it up because some of the strategies have already been developed. Yeah, I think because it's evidence-based it's… yeah.
Professor Elizabeth Elliott:
Right. Okay, another question's come in.
Have you got any ideas as to which aspects or components of the intervention might've been most impactful on behaviour?
Emma Doherty:
Yeah. We think so. So we think probably having that local champion who really understands the local procedures I think is, is a big thing. We know that these clinical guidelines get, you know, put down, but they're, they're really quite high level when they're at the national level. So that really, that person on the ground who can transfer that information into local information and support staff in doing that I think is probably one of the biggest. And having a medical record that actually prompts and supports that care provision.
Professor Elizabeth Elliott:
Great. And that medical record's used throughout New South Wales?
Emma Doherty:
New South Wales based, yeah.
Professor Elizabeth Elliott:
Okay. There's another question here. And I think what they're asking is, with this increase in the screening, they asking the brief intervention and the referral, can you tell us what proportion of women received these components of the intervention?
Emma Doherty:
Yeah. Oops, sorry, I'm getting feedback.
We looked across different visit types. So at the initial visit type, looking at an assessment of alcohol consumption, it was around 90% at the initial visit, women receiving advice at that visit is up to about 70%.
Looking at antenatal visits at 28 and 36 weeks care started from almost a no baseline. So that has assessments going up to about 40% at those later visit types. And advice probably is around about the 30% mark, looking at women who said they were consuming levels at high risk levels. I think it was about 50% of women saying that they got the appropriate referral for their risk level.
Professor Elizabeth Elliott:
Right. Thanks very much, Emma.
I think we'll move on to the next presentation. So, the last presentation for today is Nicole.
Nicole Hayes is a post-doctoral research fellow in the developmental programming of disease research group at the Child Health Research Centre at UQ, University of Queensland.
Her research interests include prenatal and early postnatal influences on child learning health and wellbeing.
Nicole is currently involved in projects looking at the influence of prenatal alcohol exposure on health outcomes in children and is doing a review of the fetal alcohol spectrum disorder diagnostic guide for Australia.
So welcome...
[View Nicole's presentation here]
Dr Nicole Hayes:
Hi. Thanks. Thanks Liz. And thank you to the FASD hub for having me here today.
Today, I'll be talking about a study that we did, that looked at sleep problems in children with fetal alcohol spectrum disorder.
So I'm sure many of you are familiar, we've had a number of presentations about FASD but in case anyone is new just a brief background, what is that, fetal alcohol spectrum disorder or FASD is a lifelong neurodevelopmental condition. It results from prenatal alcohol exposure and individuals with FASD can experience a range of cognitive and behavioural impairments in areas such as executive functioning, memory and language, attention, and their adaptive and social skills.
In terms of sleep over the past 10 years, sleep has been increasingly recognised as one of the key pillars to our health and wellbeing alongside physical exercise and good nutrition. And for children, we know that sleep is really important for their growth, their learning and their development throughout childhood, though sleep problems and disruptions to sleep are common.
We know in the general paediatric population that around 25% of school aged children experienced sleep difficulties and this disruption in their sleep has been shown to impact on their cognition, affecting their short-term memory and attention as well as contributing to behaviour difficulties, including hyperactivity, emotional dysregulation, and mood instability.
So for children with FASD, sleep problems are a common, clinically reported area of concern but they've yet to be well-described and explored in the research literature. So less is known about the impact that sleep problems may have for children with FASD.
And so this led us to our study where we wanted to explore the prevalence of sleep problems in children with FASD and to examine the impacts that sleep problems may have on behaviour as well as caregiver and family quality of life.
We were interested in these areas, because we know from research in both the general population which I just touched on as well as in clinical paediatric populations, that sleep problems can have a significant impact on these areas and particularly in children with other neurodevelopmental conditions, such as ADHD and autism, sleep problems have been shown to exacerbate neurocognitive impairment and behavioural symptoms. And also when children have sleep problems this can have a significant impact on caregivers, which we know is so integral to children's outcomes.
So, we completed an online survey with 163 caregivers of school-aged children who had a diagnosis of FASD. We asked caregivers about their child's sleep. And we also included a range of standardised measures of our outcomes of interest around child behaviour, caregiver wellbeing and caregiver and family functioning. So, we found that 66% of caregivers reported that their child experienced a sleep problem. And as I touched on earlier this is much higher than what we see in the general paediatric population, which is around 25% but it is similar to rates that we do see in children with other neurodevelopmental conditions.
The most common problem was difficulty falling asleep with just over half of children having this sleep difficulty, almost half reported difficulties with staying asleep or frequent waking at night. And a third of caregivers reported that the child woke very early in the morning. And over a third of children quite significantly were reported to have all three of these sleep problems.
So I think what this information is really showing us is that children who are experiencing these sleep difficulties are not receiving the sufficient and restful sleep that is so important for their development and wellbeing.
So when we looked at the impact of sleep problems on child behaviour, we found that difficulty with falling asleep and early morning waking were both associated with increases in conduct behaviour problems in children. So this refers to behaviours such as increases in children feeling angry, losing their temper and getting into fights.
And night waking was associated with increases in emotional problems in children. So this was increases in things like feeling worried, feeling down and feeling nervous.
So we also found that child sleep problems had a significant impact on caregiver quality of life. So night waking and early morning waking have the most wide ranging impacts on caregivers with increases in caregiver worry and anxiety. Both types of sleep problems as well were associated with poorer physical, emotional and social functioning in which we saw caregivers reporting that they were feeling tired, feeling frustrated and having difficulty finding time and energy for social activities.
We also found increased difficulties in families being able to get through their daily activities. So this is things like household activities or tasks were taking much more time and effort for- for individuals in the family.
So what does this mean for children with FASD and their caregivers? Well, overall I think that the findings really highlight that this is a significant area of concern for this population.
Importantly, I think that if we can identify and manage sleep problems in children that this offers a potential avenue where we can not only improve their sleep health, which is so important for our overall health and development, but we also have the potential to impact short-term day-to-day functional outcomes for children and have an impact on their long-term health and wellbeing.
I think also very importantly, caregivers as I've mentioned, they play such an integral role in children's lives. And we saw that sleep difficulties had a significant impact on caregivers. So again, I think if we can identify and manage children's sleep difficulty, then there is this potential for a dual and reciprocal benefit of not only optimising childhood outcomes but also improving caregiver and family quality of life as well.
And so this paper, if you were interested in finding out more information, this study has just been published in Sleep Medicine. And I think what's really important is that- Sleep Medicine is a leading journal in the clinical sleep medicine field, and this is the, only the third study to be published in this journal that looks at sleep and FASD. So I think that this is really important for bringing attention to FASD into the clinical sleep field.
So that's me.
Professor Elizabeth Elliott:
Thank you very much, Nicole.
Now we have a question for you and that is, how were the participants identified if it was a survey, what was the response rate and if the study was advertised as being about sleep and FASD, may there be selection bias in that respondents were more likely to respond if they had concerns about sleep?
Dr Nicole Hayes:
Yeah, that's a really good question.
So caregivers were- we advertised this across a number of different public networks internationally. So this was an international survey.
We don't know about response rates because we just had those who completed the survey but we did send it out to about, I think 50 different family organisations and we- so we had caregivers completing it. Most of them were from Australia, about 40%, but we did have caregivers from New Zealand, South Africa, UK, and the US.
The study was part of a larger study that looked at the health outcomes of children with FASD. So it was asking a range of health concerns, but yes, that's right. One of them, we may be biased towards people who might be more likely to, to report, to answer the questionnaire if they had a sleep problem, you’re right.
Professor Elizabeth Elliott:
Okay. Thanks.
The second question relates to ADHD, which is so common in children with FASD, and many of them are treated with stimulant medication, which disrupts sleep. What was the relationship between your findings and the use of particularly stimulant medication?
Dr Nicole Hayes:
That's a really good question.
I didn't actually talk about that here today but medication is actually one of the only significant predictors - in the information that we had available to us - that actually predicted sleep problems, to have all three problems. So the more medication you were taking, the more likely you were to, if you were taking medication and the more you were taking the more likely you were to have a sleep problem. We did also find that cohort, we didn't specifically ask about diagnoses but co-morbid mental health concerns were also a predictor of sleep problems as well.
Professor Elizabeth Elliott:
Okay.
So many of the children we see in our clinics are already being medicated for their sleep disorders. What was the frequency of use of medications… to assist in sleep?
Dr Nicole Hayes:
Sorry?
Professor Elizabeth Elliott:
To assist in sleep rather than...
Dr Nicole Hayes:
To assist in sleep rather than make melatonin.
We didn't actually ask the question about whether they were taking medication for sleep specifically. So, I can't tell you, I'm sorry.
Professor Elizabeth Elliott:
Great. Okay.
Well, what I'm going to do now is invite all the audience to keep submitting their questions and we're going to go to the panel discussion.
So could I ask Cari and Emma and Grace to join us? And then we will go to questions.
And while I'm doing that, I just want to thank Natalie Eastwell and Heather Jones from the FASD Hub who've really worked very hard to help orchestrate the submission and selection of these presentations and to set up the webinar today which so far has gone without a hitch. So thank you everyone.
And just to remind you all, there is a $300 gift voucher for the winner of the People's Choice Award and we'll be putting up a poll in a few minutes.
So I might just go to a few extra questions that we've had.
So I think Cari, there's one here for you. Has there been interest from other Western Australian communities about the Triple P training?
Dr Cari Mcllduff:
Yeah, really good question. While I was- while we were doing the work out in Fitzroy there was actually people from Derby and Broome that actually accessed some of our peer support groups. And there have been calls for more Fitzroy Valley members to be trained as well as calls, I am very good friends with one of the Indigenous trainers and there's calls all over Western Australia, particularly up North to do something similar. It just is- it had to be noted particularly by this trainer that there was, as Ellaina said, a lot of foreground work to make sure that the program worked for within community.
Professor Elizabeth Elliott:
So, so can you just clarify, you used an Indigenous trainer for the parent coach training?
Dr Cari Mcllduff:
Yes. Yep.
Professor Elizabeth Elliott:
Great.
So perhaps I could ask Emma, can you clarify for us the eMaternity records that you use to help implement the intervention? Are they available nationally or only in New South Wales?
Emma Doherty:
So eMaternity... Sorry, I'm getting a bit of feedback.
eMaternity system is only used in new South Wales. Every state will have their own medical records system that maternity services use. Every state though has electronic medical records, I presume. And the, the same logic could be applied but yeah, eMaternity as a system is new South Wales based.
Professor Elizabeth Elliott:
Great. Now a question for Grace.
You talked about the differences in the North Dakota and, and Australian sample with regard to Indigenous- the proportion of Indigenous children.
What was the- was there a difference between their rural, remote and urban locations and how do you think that might impact the results?
Grace Tan:
Yeah, so unfortunately we don't have that information for the non-FASD cohort, so we weren't able to make that comparison, but for the FASD cohort, most of the participants came from regional and remote areas. Yeah. So we don't have that information for the other comparison group, unfortunately.
Professor Elizabeth Elliott:
Great. Thanks. So we want you to put your questions in. There are a couple coming in.
A question for Triple P. I think that's you Cari.
Excellent presentation. You mentioned the resources needed to get the project up and running at the beginning - how will this work continue beyond the study? I think the community has used the data to get funding but can you comment on the, the sort of practicalities of running a program like this in similar, very remote communities?
Dr Cari Mcllduff:
Yeah. Absolutely. As Ellaina mentioned... Am I getting feedback? It may be an international thing and it's late here.
There's a lot of work that went into the individual- like the communities needed their resources changed, the language changed, and that was all with consultation within the community and I think each area needs to be consulted on what, what process works for them, but also what resources work for them.
So I can't say enough about the parent coaches, particularly the Indigenous ones, the way that they so naturally and organically became parent coaches and were just very- they were able to do it a way that the community was really comfortable with. And that is why, I guess, I stressed very much around building the local capacity and the local workforce. And I think that that needs to be done in every area. I mean, I, my boss currently is the scientific director of Indigenous People’s Health of Canada. And she's always stressing that there's no pan-Indigenous approach.
And I don't think the approach in Fitzroy Crossing will work necessarily in Derby or Broome or Sherbert but I think that there needs to be that front end consultation, trust and relationships built. And then the work happens on the ground with the community.
Professor Elizabeth Elliott:
All right. Nicole, did you- you didn't ask questions about medications that children were receiving, but what strategies were being used to deal with sleep disorders in these children with FASD?
Dr Nicole Hayes:
Do you mean in our study Liz or just generally?
So this was just a survey looking at prevalence of sleep problems and health conditions. So we didn't ask whether they were receiving any treatment, it was a portion of ours. But I think generally overall, there's not been a lot of research that has addressed sleep problems in children with FASD directly. There's been a lot more research in other neurodevelopmental conditions and I think that sleep problems have been shown to respond well to brief behavioural-based interventions, where we- where you provide some information on developing sort of healthy sleep habits, and then providing targeted strategies for a particular sleep concerns, or if they're having difficulty falling asleep that might be related to a sleep association or a delayed sleep phase, and there are- or sleep anxiety if you're waking during the night.
And so there are strategies that can directly target those sleep concerns but I think also in- we really want to be thinking about ensuring that there's not an underlying medical reason for the sleep concern, it might be related to snoring or sleep apnoea or other health conditions that the child may have.
And we also, there have been, and again, medication use and looking at timing and dosage of that medication, stimulant medication.
And the other thing is that there has been a small study that has shown that in children with FASD, they're- they have disruptions in their melatonin secretion which is the hormone that regulates our sleep-wake cycle. And it helps us to feel sleepy at night. So melatonin and light therapy might be potential options for treatment there but yeah, but I think really in the first instance, we’re really wanting caregivers to be asked about their child's sleep, but also if you are experiencing or your child is experiencing sleep difficulty then to see a healthcare practitioner and receive a referral to a sleep specialist, because they're going to be able to assess individual situation, their environment, their medication, all of those things, so they can tailor the sleep treatment for the individual.
Professor Elizabeth Elliott:
Good. Thank you very much.
Now we have a question for Emma D, maternity... A question for Emma: maternity systems and models of care across the country are so different even within states, there are multiple electronic systems.
What can be learned from this project to standardise asking about AAA and data collection nationally? Advice- asking, advising and referring.
So could you just answer that question then we'll put the poll up.
Emma Doherty:
Yep, yeah, thanks Liz.
Well, I think even though the systems across the state, I think what can really be learned from this if you take the evidence-based model that exists, and it exists, and we know AAR is an evidence-based model for assessing, advising and referring women for alcohol consumption, you take those principles and apply it to whatever the local system is or the local forms, the local procedures. I think it's still, it still all relates.
I think if you work- if you work in partnership with these services - so we're lucky enough to have a very close working relationship with our maternity services - so really what they bought was all that really- that local context, understanding of the procedures, the information systems and what we brought and the investigator group brought was I suppose, their practice change, implementation expertise to help maternity services really make those changes into their local systems.
So I think no matter what you, just putting it in your own local system, on the evidence-base like, I think it's, it's possible. And then that would standardise across the nation.
Professor Elizabeth Elliott:
I think that's the end of the questions. So I'll ask Natalie, would you mind putting up the poll? I want to thank the speakers very much and I'd like you all to, you can all vote on the poll for yourselves if you want to, or for others.
Oh, right. The result has come up - Emma is the winner. Congratulations, Emma. So Emma will receive a $300 gift voucher from FASD Hub Australia.
And congratulations, Emma and to all the other presenters. It's been a really interesting session. And thank you very much to all the participants who've contributed questions.
And again, thank you very much to Heather Jones and Natalie Eastwell for the logistics and the orchestration of this technology. And we'll see you all again at the next FASD Hub webinar.
Bye.