Sarah:
Fatima: I have completed a PhD in sleep epidemiology and I’m a pharmacist by training.
Before doing my PhD, I was doing a lot of biomedical research, but nothing to do with sleep health. My PhD was my first introduction to sleep health and my thesis was focused on poor sleep in children and how that leads to a risk of obesity in teenage and young adulthood. So that was my first exposure to sleep health and how sleep affects our physical health.
And after that, I did a certificate in adult sleep science from University of Western Australia. After my PhD, I started as a postdoctoral doing a small project on sleep health, focused on community sleep health, and here I am now doing a sleep research program, working on Let’s Yarn About Sleep Program.
Ros: I was involved in early education for our children for many years, and I think, one of the things being placed in Mount Isa, and also working with youth for many, many years, is seeing the risk of suicide and mental health was very high in our communities and still is.
Being a part of a steering group with the Let’s Yarn About Sleep program, we got to look into what was going on with the adolescents and young people, and it actually fitted in very well. I think one of the things that was a drive with that was, yes, our young people and our children, but also most likely our community- the involvement and engagement with the community was something that was a really big thing for me in regards to moving into this space.
Fatima: Ros is also a trainee sleep coach. She is finishing her certificate to become a sleep coach and her primary focus is community engagement and leading community sleep health promotion activities.
Sarah: That’s so important. I was really excited in my last year in Western Australia, I was working with a not for profit called Fair Game, and the focus was delivering co-designed health education programs in regional communities, so I’m really excited to hear what you guys are working on. Before we get too far into it, can you explain to our listeners what health equity means and why it’s so important?
Fatima: Well, in a simple word, health equity means that anyone, regardless of where they are, what their race, gender, ethnic background, or socioeconomic status is, they have fair and equitable access to all services and support that allows them to enjoy the full potential of their health.
And it’s not determined by who they are, so fair and equitable access to health services, health program support for everyone is what we mean by health equity. And it is important because it’s a basic human right. like access to a safe, comfortable sleeping space, water, air. I think health equity is important for everyone.
Sarah: Absolutely. Ros, do you have anything else to add on that?
Ros: I just believe when we talk about health equity we’re talking about, particularly around Australia, equity for First Nations people. That’s something because who I am and where I come from, to make sure we’re not always at the bottom, and how do we be involved with sustainable projects that are not a tick and a flick, but something that also changes lives and changes minds, and changing communities?
Sarah: Building off of that, can you share what you are working on at the moment?
Fatima: Our program Let’s Yarn About Sleep started as a small pilot work in 2019. Our group is quite young and we are still exploring what we are doing, but sleep is central and is vital for a healthy life, mental health, physical health and productivity, all sorts of things.
Unfortunately, we realised through our pilot work that sleep health of First Nations people is not explored in research and there are not many services or programs that align with the First Nations holistic concept of health and integrate that in sleep health service delivery models.
Our program Let’s Yarn About Sleep has multiple streams or agendas. One is, of course, we want to improve community awareness and understanding of sleep health. But instead of us deciding what the program should cover, what it should look like, we go and talk to community members and ask them. What is the meaning of sleep health and what does sleep health look like to them, and then work with them to design something they can practice in their daily life.
Our work integrates traditional or cultural knowledge with sleep science knowledge and is guided by community elders and local people who will use the program. Sleep health awareness is a key focus of our program, but we also want to train local people who can do those simple promotion activities and be the service provider for local communities. Local capacity building is another key focus for us, and also improving health workforce capacity for offering culturally responsive sleep health care. Sleep apnoea is a highly under-diagnosed health issue, just not in indigenous communities, but for people living in regional communities. They have very limited access and the wait time to access diagnostic services is shocking, so we want to introduce local models of care led by GPs and nurses based in those regional remote communities. Place-based service deliveries are the key focus for our work.
We want to train local people, improve cultural capability of workforce, improve community awareness and understanding of sleep health, and bring services to local communities so we can reduce the wait time and improve service access when people need it. That’s essentially all we do, but Ros can add more to that.
Ros: I think one of the things is that, particularly around the involvement with the Let’s Yarn About Sleep program, is that the engaging of the sessions are there as well. I think that is in the activities we do to implement culturally appropriate activities and programs so our children are coming, particularly Aboriginal Torres Strait Islander children, that they have a connection to their identity and to culture and around some of the techniques we’re using as well.
But also the highlight for me is around barefoot on country, which is a relaxation one, but also the walk on country. We’re also implementing that things don’t just happen in four walls. You know, they’re out there, they’re on country, everything you need is sustainable and it’s there. I think the sustainable way that we actually deliver around the program and the yarning as a concept, but also with our steering group members, we’ve got a group of elders that have supported us all the way through and that is genuine, but it’s also a requirement to take from our elders and listen and sit down and learn with them alongside, and be able to guide that process.
And then we have the science around that, which I think for all of us, regardless of whether you’re a young person right through to the community, that it is very engaging and very diverse. And I think that’s something that makes it very unique – around the diversity of the program – and having something like the Let’s Yarn About Sleep program in Mount Isa, which is the first of its kind ever, not just in Mount Isa but in the whole country.
And I always believe if we can save one life, that’s something, but I think one of the things that we’re doing is that self-determination. Training up people who would never think they were in the line of health, and particularly as a sleep coach as well. And then with the sleep apnoea as well, looking at training technicians.
And it’s something that we can do, you know, in our own hometown with the support of our experts and our professors, particularly like Fatima, who drives us to be better at what we do and to be walking side by side. So we need one side from our elders to be really deadly at that, but to have that dream that it can happen, we then have our professionals on the other side who are there and particularly Fatima, who has the heart for it, but also the knowledge.
Sarah: One of the things that I talk to a lot of researchers about regularly is the struggle with translating that research into your day-to-day? How do you make it meaningful? How do you take it out of the lab and actually apply it? So what are some of the things that you are doing, and what does the day-to-day look like in the Let’s Yarn About Sleep program?
Fatima: Well, in simple words, I think we can say we are bringing the sleep lab knowledge to community. We are reducing the barrier between science and technology. They’re sitting in sleep labs and we as sleep scientists are bringing it to the community, and there’s so much we’re learning from that experience as well. We have the theoretical knowledge or the scientific knowledge of sleep, but implementing that in daily life and integrating cultural knowledges, I think has improved our understanding and knowledge as well. And it has enriched the process. All of our work is translational. It’s done in partnership with service providers, health services, schools, mental health services.
Currently, we have around 25 partners Australia-wide, and some of those are advocacy partners like Sleep Health Foundation, Australasian Sleep Association. Some of those are local health services, regional health services, hospitals, primary care services, some mental health services like Beyond Blue, and some are local level, small organisations like Young People Ahead – our first partner, but they are so well embedded in the community that their knowledge and understanding of local cultural protocols, context, and community knowledge is super important and critical for the success of the program.
And like any translational work there are challenges and every day brings its own unique challenges. But there are people on the team, outside the team, who have done that for people like Ros, who have been doing this work for so many years, and they bring that practical knowledge and experience with them, and they guide us in how to work on those challenges and those barriers, and then we have elders.
Sarah: Ros, do you have anything you want to add to that, or thoughts from being on the ground working hand in hand with community? Are there any exciting success stories, or challenges that you ran into as you started that were a quick learning curve?
Ros: I think one that was very successful was the consultation with our community. And when we put the statistics up around the numbers, how we connected with community and yarned about the program if they wanted it on country, and things like that, that it was like hundreds of people. And I think some people couldn’t really believe that. And I said, well, we don’t just consult with one or two – we do it properly and we do it with many. We had all different groups that were coming, all different diverse groups of Aboriginal people that live in Mount Isa and surrounding areas.
Ros: We have an open door policy and people come and they know where we’re sitting. We’re sitting with one of our partners in office and they can come there, they can have a cup of tea. That’s what it’s about, having that tea, giving them the best food they have and making them feel like they’re at home when they enter the doors here.
So I think that’s it. You have to be open for that, you know. I think that’s the way of the land around Mount Isa, and when you’re moving into different lands we’re always only a visitor somewhere else on someone else’s country.
Sarah: This is the first program of its kind in Australia, which is very exciting. Are you guys taking any learnings from research that is happening in other countries, or is this very much focused on Australian learnings and keeping it really local, hyperlocal?
Fatima: Well, we did try to look for some examples, or some case studies from countries with a similar history like colonisation and disadvantaged indigenous communities but we could not find any program on sleep health anywhere.
Some people have done some data analysis on sleep health using secondary data or surveys and some studies have done some exploration of sleep health of first nations people in those communities or countries, but nothing more than that. There’s no service model.
I think we can confidently say the program is first ever globally. It’s just not Australia. We have received that recognition as well from leading international researchers, scientists, that they want to know more about what we are doing so they can do something similar in their countries as well.
It’s a huge privilege, but it’s a huge responsibility as well because we can’t mess up.
Sarah: Lots of learning on the fly, hey?
Fatima: Yeah, it’s interesting, but I guess we know the responsibility is quite serious and we have that accountability embedded in everything we do and in every aspect of our research, starting from the promotion, design, delivery, evaluation, and implementation. It’s all guided by the end user, what they want, what will work for them, not us sitting in Brisbane or Sydney or Melbourne deciding it for people in remote communities. We go and talk to them and follow the co-design approach. But before we co-design we try to co-define the problem – like what do you mean by challenges in sleep health service access in this community, what that looks like, and then asking them to come and talk to us about what we can design together that will be successful in Mount Isa? We don’t assume what will be successful in one community, we can just take it to another community.
Rounds and rounds of consultation and co-design. And that’s why we spend a lot of time traveling. I do a lot of travel just to sit with people, understand what they need and what they want from us. And then how do we design something that is based on sleep science and is robust, but is also practical and implementable in those unique contexts.
Sarah: Amazing. Ros, anything you want to add to that?
Ros: I think it’s amazing. And just recently at the symposium here in Mount Isa, we had a lot of people who were very interested to look at how we’re doing what we’re doing now. To know we’re leaders of this, that’s a really big thing, and that people are following it. We had the documentary with Dr Michael Mosley as well, the SBS, Sleep Revolution, and that was a really big thing that happened out here and having our young people being involved on country, and it gives a bit of a stance from a model of a very clinical way of doing things and how we do things, you know, being on country and being out bush around nature, and that practice that we’ve known for over 60,000 years as being the oldest living culture in the world.
And I think that’s something quite amazing to be able to collaborate together.
Fatima: We recently, as Ros was referring, hosted a community symposium. One of our market funded projects is in the final stages, and we decided that instead of doing a workshop with chief investigators in Brisbane, we’ll go to Mount Isa and bring all the team members from different parts of Australia, invite all the participants and their family members, and broader community members to reflect on what we have achieved and celebrate the success. That was such an amazing event. Having a sleep symposium in Mount Isa. Three years back when we started, nobody wanted to talk about sleep, and here we are celebrating a sleep symposium in Mount Isa. What a journey. Amazing.
Sarah: Congratulations, you guys. Just absolutely amazing. Looking ahead, what do you envision for the future of sleep medicine in communities regarding the overall impact of wellbeing and healthcare? How do you see all that tying together in community? Obviously, we’re in the early stages but there’s so much excitement ahead.
Fatima: I know we have seen that through our consultation and program that if we empower people, and give them the knowledge at the right time, it can prevent a lot of health issues. Especially considering the mental health issues and the risk of suicide in young people, unfortunately, in remote communities. People don’t talk about sleep and what role sleep can play in reducing the risk of severe mental health issues.
So, we have designed this program, we have tested it, and we have shown that it can offer great benefits. Local schools are quite keen to implement the program as a school level extracurricular activity, which is quite motivational. We want sleep health to be implemented in the preventive health program as a key focus of healthy life initiatives. So schools are a good opportunity to promote. We don’t talk about sleep so much in school, so that’s kind of missing as part of the health improvement strategy. We are quite heavily advocating for giving sleep health the focus it needs at a school level in early life.
We have recently applied for a grant to invest in the sleep health of young children, starting from kindy and primary years when their sleep health habits, patterns and routines are being formed. If we empower the parent, or carer, or young people to understand what sleep health means, and especially these days with access to technology and devices. If we empower people and give them the knowledge, perhaps they would control their use of devices prior to bedtime.
Sleep health promotion needs to be an integral part of any teen health focus initiative. But in the adult population, there are a lot of health issues, sleep health issues, insomnia, sleep apnoea, which are unfortunately highly under-explored, especially sleep apnoea. Only people who are really serious get caught, and it’s a long wait time. And when they come back to the community there’s no local support for that. So if people are on CPAP, there’s no support. We are trying to go to other communities but we can’t be everywhere. I guess we all need to share that responsibility. How do you bring services and sleep health programs to local communities?
Especially rural, remote, and regional which have geographical barriers in service access and educating people more about sleep health, what it means and why it’s important and what are the long-term impacts of poor sleep? Which is kind of a big missing knowledge gap in many communities, just not Indigenous. If you talk to any other people, they’ll talk about the short-term impact of poor sleep, like, when you wake up, you’ll feel tired and exhausted, but nobody talks about sleep and dementia, and sleep and obesity, and all those things. There’s a lot that needs to be done and we are trying to do what we can do, but many other researchers are needed to do that work in their communities as well.
Sarah: Absolutely. What are the next steps, or what kind of things are getting you excited for the future?
Ros: I think all of it. It’s good to finish one round of the Let’s Yarn About Sleep program – the sleep apnoea, the training, working side-by-side with other health professionals as well, and learning more skills and knowledge around some of that. I also love traveling to the remote communities and I think that’s something that is quite exciting, but I think we also are looking at how we can improve and what does that look like.
We’ve got Sleep for Strong Souls enabling other people come on board with us as well. So that’s going to be quite exciting, trying to find the right fit to that. But I think every day is good. And I think the big thing is looking at, how do we inspire young people within the program. But also our young people, like our sleep coach here, how do we inspire these young people to be something they would never dream of doing? And having that opportunity to be able to do it on home ground.
Sarah: If people want to learn more about Let’s Yarn About sleep, where can they go? Where can they find information?
Fatima: There’s a program website. They can visit the UQ Poche Centre, where we are based, as there is a specific page for our program. We attend the sleep conference every year, where we were plenary speakers. And for those who are based in Brisbane, I’m at Toowong, and happy to have a chat if people are available.
Ros: Perfect. And I’m in Mount Isa, so happy to chat too.
Sarah: Well, my last question, one that’s always close to my heart, is what books or resources would you recommend to our listeners?
Fatima: For us it’s mostly research papers which makes us excited. I think a couple of books that everyone should read at least once in their lives, especially if you are interested in sleep health is Why We Sleep, by Matt Walker, and another book from Guy Leschziner is The Nocturnal Brain. But for any other person who wants to know more about sleep health and what it means and what changes they can bring in their daily life around sleep, the Sleep Health Foundation has a lot of resources on their website. They can come to our website as well. We are trying to add more resources to that and we have created sleep diaries for First Nations people and other resources, like a sleep questionnaire.
Sarah: I think a lot of our listeners will know a lot about sleep, but they might not know a lot about sleep in communities or health equity or things like that. Are there any particular resources that you can recommend in that space?
Ros: I think one of the things, would be Closing the Gap. It details where we’re moving to and some of the gaps that are there; that’s something to look at with the government incentive as well. We’ve got different children’s books that we use within our program. They’re very diverse and there’s a lot of books around the history of Australia and Aboriginal people and prior to colonisation.
Blood on the Wattle, just talks about some of the really traumatic experiences that have happened and Mount Isa is featured in there along with a lot of other places as well. One of the things I read was called Under the Quandong Tree, which was by a New South Wales Koori woman, and that was around women’s business. I think that is how we actually stand strong and proud to be able to be in a space to learn about something that’s a bit outside of the box that we know. There’s one that’s called the Aborigines and it’s about the Dreamtime stories.
I think the best resources you can have are the human resources – so it’s talking to people that have been through that experience, whether it’s the health side of it, or whether it’s the Aboriginal ways of knowing and doing, our elders, and looking at some of the really old researchers as well, people who might have been the anthropologists and the people that walk beside them.
Sarah: Excellent. Great insights. Thank you so much we really appreciate you taking the time.
Associate Professor Fatima Yaqoot
UQ Poche Centre for Indigenous Health
Associate Professor Fatima Yaqoot, a Pharmacist, Epidemiologist, and Sleep Scientist, leads the ‘Let’s Yarn About Sleep’ program, aiming to reduce the societal burden of poor sleep through multidisciplinary research and co-designed programs.
Roslyn Von Senden
UQ Poche Centre for Indigenous Health
Roslyn Von Senden is a Kalkatungu/Kalkadoon woman from Mount Isa, North-West Queensland and has Gangalidda, Garawa connections across Burketown in the Gulf of Carpentaria, Queensland with ancestral ties and connections. Roslyn is working as the Community Engagement Manager for the ‘Let’s Yarn About Sleep’ program.