Kurt is joined by Dr Natalie Phillips, who has a Doctor of Clinical Psychology and PhD (Neuropsychology) from the University of Sydney. They discuss her research and presentation that won the People’s Choice Award in the “Three-minute Thesis” session at NOFASD’s conference, “The FASD Forum ’22”. Natalie’s submission for the “Three-minute Thesis” was titled: Caring for children with FASD: importance of understanding the whole family’s needs. They discuss ways that we can best help families which have children with FASD.
For more information about FASD, please go to:
Caring for children with FASD: importance of understanding the whole family’s needs:
https://adc.bmj.com/content/107/8/755
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewee: Dr Natalie Phillips
The copyright is owned by NOFASD Australia.
All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia.
The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.
Dr Natalie Phillips Biography
Dr Phillips is a Clinical Psychologist for Royal Far West and a researcher. She has a Doctor of Clinical Psychology and PhD (Neuropsychology) from the University of Sydney. Her previous research has included investigating mood and cognition following surgery in children with treatment resistant epilepsy and rehabilitation of working memory and treatment of sleep disturbances in children with traumatic brain injury. She regularly presents at national and international conferences, including at NOFASD Australia’s major conference, “The FASD Forum ‘22” where she won the People’s Choice Award for her presentation in the “Three-minute Thesis” competition. Judged by a panel of people with lived experience of FASD, the People’s Choice Award, was presented to Natalie Phillips for her presentation on the research she is doing with a team of colleagues on the topic of Caring for children with FASD: importance of understanding the whole family’s needs.
Interview Transcript
Kurt Lewis (00:03):
How much do you know about pregnancy and alcohol? The reality may surprise you. Alcohol exposure while in the womb may cause Fetal Alcohol Spectrum Disorder in unborn children. It may lead to lifelong physical and or neurodevelopmental impairments, such as problems with memory, attention, cause and effect reasoning, and difficulties in adapting to situations. For such an impactful disorder, it is rarely spoken about in the popular media. This podcast will take you behind the scenes to chat with the people who understand FASD. This is: “Pregnancy and alcohol: The Surprising Reality”.
Frances Price (00:43):
NOFASD Australia was founded over 20 years ago, in 1999, by Sue Miers because of her personal experience caring for a child with FASD and her struggle to find information and appropriate support services in Australia.
Originally run with just a small group of committed volunteers, from this grassroots beginning, NOFASD has now grown to become the leading provider in Australia of information, services, linkages and referrals regarding FASD. We are, indeed, the Essential bridge – linking those with lived experience with researchers and clinicians.
At the core of what we do, is our commitment to ensure that those who are living with FASD, and their families, are provided with the most appropriate supports to assist them all in achieving positive outcomes.
In keeping with this aim, in May 2022, NOFASD coordinated a landmark virtual conference, The FASD Forum ’22. This conference provided a wonderful opportunity for professionals to share their FASD knowledge and research expertise with parents, carers and individuals with FASD – and in turn, for those with lived experience of FASD, to enhance the knowledge of professionals by sharing these lived experiences.
In this podcast episode we’ll be hearing from one of the presenters in the “Three-minute Thesis” session at this conference. This session offered health professionals and academics, who are researching on an aspect of FASD, the opportunity to present an engaging snapshot of their research and its implications, within the brief timeframe of just three minutes.
I’d now like to introduce Kurt Lewis, the host of NOFASD’s podcast series who will introduce his guest for this episode. Take it away please Kurt!
Kurt Lewis (02:53):
Welcome, welcome ladies and gentlemen to this brand-new episode of “Pregnancy and Alcohol: The Surprising Reality”. My name is Kurt Lewis, your friendly neighborhood podcaster, and today I’m interviewing another awesome, amazing guest. Joining me is Dr Natalie Phillips, psychologist and research fellow with the University of Sydney and also the recent winner of the People’s Choice Award at “The FASD Forum ‘22” for her “Three-minute Thesis” presentation. How’s it going, Natalie?
Dr Natalie Phillips (03:27):
Oh yeah, really good. I’m you know, thanks for having me. I’m really excited to be here.
Kurt Lewis (03:32):
Oh, really excited to have you on, I mean, I, first off, I really wanted to congratulate you for winning the People’s Choice Award. I loved your presentation. I thought it was an award very well deserved, and I know that as soon as I saw it, it was like, oh, I think we’ve got a, we’ve got a winner there. And obviously the people judging the contest really agreed with me. How did it feel to win this award really?
Dr Natalie Phillips (03:53):
Well – firstly, thank you. That’s very kind of you, I think, I mean, it felt great receiving recognition from people who’ve lived experience of Fetal Alcohol Spectrum Disorder. It’s extra special. I think that’s why we do this work to make a real impact. And you know, I guess I’m really grateful to NOFASD for organising the conference. And I guess allowing researchers like myself to share our findings with, not just other academics, but also the wider community. One thing I will say though, is I guess, while I won the award for my “Three-minute Thesis” presentation, this research really is a team effort. So, I think the first thing I need to do is acknowledge, my teammates. So, also involved in the research, was Professor Elizabeth Elliott, Dr. Marcel Zimmet, Associate Professor Yvonne Zurynski, Amy Phu and Dr Meenakshi Rattan.
Kurt Lewis (04:47):
That’s an all-star list right there. If you don’t mind me saying.
Dr Natalie Phillips (04:50):
It is. I know I’m very fortunate to have worked with some other really great researchers.
Kurt Lewis (04:55):
Natalie, you are a psychologist, a research fellow with the University of Sydney. What drew you to the field of psychology and research? It’s a very interesting field I’m sure, but what drew you to there?
Dr Natalie Phillips (05:06):
I think that’s a really good question, and one that I sometimes have trouble answering, just because I think there’s so many things that led me to the field of psychology. I can remember from my childhood always being really interested in human behavior and why we do the things that we do, before I even really knew what a psychologist was, and did day to day. But I was really fortunate in high school to be able to study psychology as a year 12 subject – and I just loved it. From that moment I decided I wanted to be a psychologist. I knew I wanted to work with people, and I knew I wanted to work in a helping profession, but it really wasn’t until, I think, undergraduate university that I really started to become more and more interested in the brain and the impact of trauma on the brain and how that impacts people in their day-to-day life.
Dr Natalie Phillips (05:58):
My interest in research didn’t really develop until probably about four years into uni. When I realised that research could be more than just sitting in a dark room, doing stats, you know, I discovered that you can actually work with real people and hope to make some real-world change. And so, I went on to do a, a PhD while I was doing my clinical training, working with children and families with brain injury. And I really enjoyed that. I think now I really love being a clinician scientist. I feel very privileged to be able to have the best of both worlds. I really love working with children and families. I think it’s one of the most rewarding jobs. At the same time. I’m very passionate about evidence-based practice in terms of proving assessment diagnosis, and also developing new treatments for children with a range of different neurological conditions like brain injury, but also helping children and families with neurodevelopmental conditions like Fetal Alcohol Spectrum Disorder. So, I feel really lucky to, to be able to do both.
Kurt Lewis (07:05):
That’s interesting. So, if you don’t mind me asking why like brain-based kind of injuries, was that, did you find that interesting, or did you find that drawn to that particular area?
Dr Natalie Phillips (07:15):
I had the opportunity to do a lot of subjects in neuroscience in my undergrad, and I loved everything about it, the whole neuroanatomy side of things I think I really loved. And then I remember having a lecture. I mean, this is trying to think quite a few years back, but I’ve distinctly remember a lecture about brain injury. And there was just something about that lecture that interested me. I think, it was probably partially the lecturer really bringing in some lived experience into that and talking about the functional impact. So, what that’s really like for someone living with a brain injury – and I became really interested in how do we help these people? How do we help with rehabilitating brain injury? I think at the time it was probably, there was a lot of talk about neuroplasticity and this idea of being able to change the brain I found fascinating and, and drew me in.
Kurt Lewis (08:17):
So, most recent study, the study that was the topic of your “Three-minute Thesis” presentation, you examined the impacts on the families who have a child with FASD. Could you tell us about the objectives of this study and how you gathered the data for this study?
Dr Natalie Phillips (08:34):
Absolutely. So, I guess just to give some context, we know that Fetal Alcohol Spectrum Disorder is really associated with a range of different difficulties in brain function, which varies from child to child, but can include things like difficulties with thinking skills, memory, behaviour, regulating emotions, academic skills, and language and things like that. And so, I don’t think it would be surprising that there would be an impact on the family, but there’s really very limited research into caregivers experience regarding the assessment and diagnostic process, as well as family wellbeing. This research is quite limited at the moment, and I think it’s quite critical to evaluate this in order to understand, or I guess, improve diagnostic services and support services for families. There have been a limited number of studies that have looked at the caregiver experience, most have been qualitative. So, they’ve collected some great detailed information.
Dr Natalie Phillips (09:37):
And by qualitative, what I mean is in-depth interviews. So really rich information, which I think is really important. And there’s certainly been a small handful of Australian studies, but none of these studies have really used standardised assessment measures to quantify this impact on children and families. So, I guess with that in mind, our overarching goal of the research was really to evaluate the impact of FASD using validated assessment measures to look at three main areas. Firstly, the impact, caregiver experience of the diagnostic process. So, what it’s like from the moment of sort of noticing first signs and symptoms, all the way up to actually receiving that diagnosis for their child. Secondly, we wanted to know about the impact of Fetal Alcohol Spectrum Disorder on not just the child, but also day-to-day life in the family and what that’s like for families, and then thirdly access to support services.
Dr Natalie Phillips (10:41):
So, once families have this diagnosis, what are some of the challenges to receiving support and help? So, in terms of how we carried out the study, I was working in FASD specific assessment service out at the Children’s Hospital at Westmead at the time, helping them to really understand what they were, and describe what they were doing in their service. It’s a multidisciplinary assessment service. And so, what we did for this study was we approached families attending that assessment service, who had received a diagnosis of Fetal Alcohol Spectrum Disorder for their child. And we asked them if they would be willing to share their experiences with us, and for those families that agreed, we sent them out a comprehensive survey by email that they could complete online in their own time. And it was a survey that Professor Elizabeth Elliott and colleagues had actually piloted and then used, in other children with rare diseases, but had been adapted for use in this population.
Dr Natalie Phillips (11:40):
And so, you know, the survey included open-ended and closed-ended questions from everything, from behavior in siblings to financial strain, to, you know, support groups for the family. And we were fortunate enough to have 35 families who very kindly volunteered their time. You know, we are really grateful for those families that did give up their time to complete this survey for us, I think without their participation, we really wouldn’t have been able to make some of the recommendations that we were able to make, which I’m, I’m happy to chat to you about a little later as well.
Kurt Lewis (12:16):
Well, I’m glad you had such amazing families who are willing to really cooperate and fill out this survey and I imagine the results of this kind of survey, would’ve been a really good insight and to what happens with families. So, I guess what was the result of the study? What were the impacts on families, that families told you about?
Dr Natalie Phillips (12:34):
Oh, absolutely. So, I’ll try to sort of, I guess sum up the, the findings, according to those three main objectives that we talked about, because I think we collected so much information and I’ll try and I guess give you a snapshot of some of the most important things that we found. Just to give context though, with regard to what sort of families participated we had, I guess if you could imagine the sort of average child in this study was around about eight and had really received their diagnosis on average around about the age of seven – and most were in foster care. So, in terms of our first objective, to look at the diagnostic process, the main finding really to come out of that was that diagnosis was delayed. So, it took an average of almost four years for parents to receive a diagnosis for their child, from the moment that they noticed first signs and symptoms to actually receiving that diagnosis.
Dr Natalie Phillips (13:28):
But for some, it was much longer. So, for some, it was six years of trying to work out what was going on for their child. When we actually asked caregivers, the majority felt that a diagnosis really could have been made sooner. And some of the reasons that caregivers gave us for what they thought were the reasons for delay, were most commonly lack of healthcare, professional knowledge, but also long wait lists to actually see a specialist, as well as just lack of family awareness at that early stage. And I think this is really important because the kind of consequences that caregivers felt resulted from this delayed diagnosis, included things like delaying really important treatment supports and funding. But I think on a more personal level, they told us that, you know, without that diagnosis, they really didn’t know how to best support their child and really felt like they didn’t get that understanding from others. In terms of looking at the functioning of not just the child, but the family, which was our second objective, unsurprisingly, we found that children were significantly impacted.
Dr Natalie Phillips (14:38):
So, most of the kids in our study had either variable problems or essentially significant problems in all areas of day-to-day life, you know, requiring additional assistance and school education. Maybe they were missing school, maybe their family, their relationships with their peers and leisure activities, you know, were really impacted. But importantly, the whole family was impacted. So, there were significant impacts on families. Things like quite a lot of time away from work in order to be able to care for their child and take them to medical appointments and so on. And there was a real social impact. So, missing out on things and not being able to see family and friends as much because of, I guess, the demands of trying to help their child
Kurt Lewis (15:27):
Did the people in the survey specify that was this due to judgments from the family or just having their hands full, so to speak.
Dr Natalie Phillips (15:36):
So, I think one of the benefits of doing a qualitative survey is you can follow up on some of those things. In this case, I would be making assumptions, I think.
Kurt Lewis: (15.52)
Dr Natalie Phillips (15:53)
So, the most that I can really say is that, you know, we used this validated survey that looked at the impact on families, which had a range of different questions or responses that families could give. And some of those were, because of caring for my child, I miss out on things. So, I can’t comment beyond that. And I think that these questions are really important and things that can be followed up with more intensive interviews.
Kurt Lewis: (16:16)
Definitely.
Dr Natalie Phillips (16:17):
Yeah, absolutely. So yeah, there was a social impact, not having time for other family members was another thing – so siblings and partners – and caregivers were just really stressed and fatigued.
Dr Natalie Phillips (16:24):
They were really concerned about the impact on the siblings of the child who had been diagnosed with Fetal Alcohol Spectrum Disorder. They said things like siblings received less attention, that behaviourally sometimes they displayed anger and frustration about the affected child’s needs, understandably, and caregivers really expressed concern about their wellbeing. And so, in considering all that, it’s really not surprising that we also found the impact on families was really greater for families who were caring for a child who had worse health functioning, but there were also some really positive outcomes of this study as well, which I think are really nice and really important. Families said that they really became closer, because of what they had shared together. And one of the things to come through with receiving a diagnosis and being able to understand their child better for caregivers, was that their self-esteem improved. You know, they felt good about themselves, that they had learnt to manage their child’s needs.
Kurt Lewis (17:27):
Was that before diagnosis or after diagnosis?
Dr Natalie Phillips (17:31):
So, we asked whether learning to manage their child’s needs had actually made them feel better about themselves. And this was a question that many caregivers had said yes to – you know, they’d either agreed or strongly agreed. I don’t think we specified whether it was before or after diagnosis, potentially it wasn’t so much about diagnosis, but it was more about learning to manage their child’s needs – whether that was before or after diagnosis. One of the things I think, that had come across earlier was that, getting that diagnosis had helped families to understand their child better. So, you could make that assumption or that link, I think, but I couldn’t say with certainty.
Kurt Lewis (18:09):
Mm. Especially with that particular question, I’m guessing. Yeah.
Dr Natalie Phillips (18:12):
Yeah – so I think there’s always limitations of research. There’s things that you try to improve upon with each study.
Kurt Lewis (18:18):
You’re definitely saying a lot of things that I want more answers for. I’m guessing you probably want more answers for – can I ask more questions than this, for this one?
Dr Natalie Phillips (18:27):
Yeah, definitely. And just before I forget, third thing that we looked at in terms of sort of the main results that came out of this study were that, I think I mentioned earlier, that the third kind of overarching aim was to ask about access to support services. We found that most families said that they actually didn’t have adequate access to health and support services. And the reasons given most commonly, were things like having to travel long distances, long wait times and also having to care for other siblings. So, they were the main barriers to being able to actually access, not just specialist doctors, but also very important allied health treatments from occupational therapists, social workers, psychologists, for example – and despite caregivers reporting quite high levels of stress, very few said they were actually receiving any psychological support. And many caregivers said that they hadn’t been given any information about support groups at the time of diagnosis. But when we actually asked them whether they would want information for support groups at that time of diagnosis, every single caregiver, so a hundred percent said they would want that information. I think that’s really important to know. And it did impact on clinical change in the program and that information on support services, like NOFASD Australia, is really given to every family receiving a diagnosis.
Kurt Lewis (19:53):
I’m glad that they’re, we are giving out more information on support groups, especially I know NOFASD have been working on a program, Families Linking with Families, which we’ve been working on for a couple years now. And it’s really just all online through zoom, linking families up in a support group kind of fashion, as well as providing information. You just kind of hope these kind of services are able to help. And it sounds like this is the kind of thing that families really want and really want to be made available.
Dr Natalie Phillips (20:22):
Yeah, absolutely. I think families do really want that. I mean, certainly from our study that’s what they told us. And I think whether families follow that up or not, it’s really important that we are giving them that information and giving them the opportunity to seek out support and to connect with other families that are going through things similar to them. I mean, I think it’s my understanding, the program that you just mentioned. I was talking to Professor Elizabeth Elliott recently and, and she had mentioned that program. So, it sounds like, those families are being, you know, linked in with that service.
Kurt Lewis (20:54):
Well, I certainly hope so,
Dr Natalie Phillips (20:55):
Which is really cool. Yeah.
Kurt Lewis (20:57):
So, we’ve talked a lot about your research. Is there any future research that can really lead off from this project? I mean, I know I’ve mentioned that you’ve given us a lot of questions as well as a lot of answers. Is there more research that can really flesh out some of these answers to these questions?
Dr Natalie Phillips (21:13):
I think there’s so much that could follow on. We could probably go on for quite a while. One of the things that kind of comes to mind is, you know, I mentioned that most of the kids were in foster care in our study. So, we obtained some really useful information on what the diagnostic process is like and what it’s like to have that diagnosis predominantly from foster parents. And so, I think moving forward, it’s really, really important that we also interview and get information and, you know, include biological mothers and fathers and parents so that we can, I guess, better understand their unique experiences around the diagnostic process. What it’s like to receive a diagnosis of Fetal Alcohol Spectrum Disorder for their child – in order to really be able to inform development of services and support pathways for biological parents who would have a unique experience, I think.
Dr Natalie Phillips (22:10):
Secondly, while it was a comprehensive survey, I think you’ve kind of touched on before, you can’t cover everything and there’s many other things like school stresses. So, things like bullying and problems with peers and academic performance, as well as potential stigma that might come along for the child in terms of having a diagnosis of FASD. And I think that could also potentially contribute to caregiver stress. And we obviously didn’t look at that in our study, but I think that’s something important to consider and to follow up in future research. I also think we found some really novel and interesting information about the impact on siblings, but I think more needs to be done to really determine what the needs are, and what support services we need to ensure that we are caring for siblings really were impacted. And I guess, last but not least, would be potentially rolling out a survey like this nationally to really be able to get a better understanding of how Australian families as a whole, are really impacted across the board, to help inform services nationally, across Australia and being able to include a survey like ours with all the follow-up, rich, qualitative questions, I think would probably be the ultimate.
Kurt Lewis (23:25):
With the ultimate future research. Honestly, I’d really look forward to reading that bit of research, a national kind of survey, as opposed to what you’ve captured is this very snapshot of the New South Wales based kind of area. It’s also interesting as well, I think your research really pulls out the fact that FASD isn’t just one person. It also affects the whole family unit, so to speak. it doesn’t affect just affect the carers and the parents, but also the siblings as well. And it really illustrates the point that FASD is not just – it also has wide-reaching effects, that we might not see.
Dr Natalie Phillips (24:01):
It really does. I think services need to be, you know, rather than being child-focused, they really need to be family-focused. I guess we all really need to be family focused and consider, especially as clinicians when you’re seeing a child, you know, whether it’s for assessment or treatment, that these impacts are so much more far-reaching and it might be that the parent needs more support or it might be the sibling also needs some support, and being mindful of that and being able to help when help is needed or at least offer that support.
Kurt Lewis (24:33):
I was also wondering, is there more, our listeners could be doing as individuals or we could be doing as a whole society to, you know, support carers, siblings and people with FASD.
Dr Natalie Phillips (24:44):
That’s such a great question. That’s such a big question. Oh, really important one though. I really, yeah, I think it’s a great question. There’s lots that can be done. And I’m sure there’s many people who could probably speak well to this. If I think about our research and some of our findings and apply that to the question, the things that come to mind for me, are trying to reduce the diagnostic delays for families. So, as a society, as a whole, better education for healthcare practitioners, not just practitioners in FASD specific services, but generally to be able to better recognise Fetal Alcohol Spectrum Disorder. Also from a prevention perspective, in terms of asking about alcohol use in pregnancy and educating families about the impacts of alcohol in pregnancy in a really inclusive and non-stigmatising way, and also just educating the community as a whole. I think empowering families is so important, empowering them with the knowledge from a prevention perspective again, but also to be able to seek out support and referrals, you know, when they think that Fetal Alcohol Spectrum Disorder could be, you know, the cause.
Dr Natalie Phillips (25:58):
Secondly, I think given the impact on the whole family as clinicians and people who work with families, I guess as well as communities as a whole, we need to be mindful that siblings are impacted and need support. We need to encourage parents and support them in being able to take time out for themselves and their child. I think that’s a hard thing to do, but, you know, as a parent to take time out when you’re carrying for well, any child, really, but especially caring for a child who might have many different difficulties and to provide support to caregivers in terms of, you know, as I mentioned earlier, offering referrals to not just psychological support, to see a psychologist and someone to talk to, but also, to support groups, to be able to talk to other people and, and get support from other people with lived experience who understand what they might be going through. Thirdly, I think in terms of access to support services, I think there’s more that we need to do to help families overcome some of those barriers to actually accessing support. They’ve received this diagnosis, now where to? How do they get that support they need? And it could be having things like a dedicated social worker to help with your coordination and travel to those specialist appointments.
Kurt Lewis (26:20):
I couldn’t agree more, especially with education, people really underestimate the, you know, the power of education. But as a couple of wise, people once said, said to me, once you know more, you do better. And with education, we can do better things in terms of diagnosis even, how we could probably, if there was more medical professionals who are more aware and well better educated in FASD, this process might be a lot more quicker.
Dr Natalie Phillips (27:44):
Yeah. And I think we can also support one another as a community in educating one another and raising awareness because, you know, a lot of people don’t know the impacts of alcohol during pregnancy or have been given this information or, you know, don’t know to ask.
Kurt Lewis (28:01):
Definitely. And that’s always been the aim of this podcast series really to educate -pregnancy and alcohol, you know, just it’s the surprising reality
Dr Natalie Phillips (28:10):
<laugh>
Kurt Lewis (28:11):
Well, Natalie, I want to thank you so much for coming on this show and just, you know, telling us about your research. It’s really great. And I look forward to reading more research and especially in this area, what do you do further from this, this research? I’m really excited about what it, it could mean for the future.
Dr Natalie Phillips (28:27):
Thank you so much for having me. It’s been great.
Kurt Lewis (28:32):
Thank you for listening to this episode of “Pregnancy and Alcohol: The Surprising Reality”. Please tune in next week for another episode of our little podcast. If you like this podcast episode, then please show your support by leaving a rating and review on iTunes – every little bit helps. All rights reserved. For more information about FASD then please go to www.nofasd.org.au
