We take a look behind the screens… and find out how online social spaces are benefitting intensive care unit clinicians. Next, we ask the question – who is responsible for talking to women about pre-conception care? Finally, how iPads are helping people with intellectual disabilities cope with mental health problems.

 

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Speakers:

Kaye Rolls – Doctoral student, University of Technology Sydney
Dr Amie Steel – Postdoctoral Research Fellow, Australian Research Centre in Complementary and Integrative Medicine at UTS & Associate Director of Research, Endeavour College of Natural Health
Dr Lynette Roberts – Clinical Psychologist and Researcher in Mental Health, University of Technology Sydney

Producer/Presenter: Ellen Leabeater
Producer: Ninah Kopel

START OF TRANSCRIPT

Ellen Leabeater: Hi, welcome to the show. Ellen Leabeater with you. On the show today, you’re thinking of having a baby sometime in the future. So when is the right time to discuss pregnancy preparation?

Amie Steel: The GP is not thinking, “and while you’re here – you’re a healthy young woman and you might be getting pregnant in the next two years. Let me talk to you about pre-conception care.” That just doesn’t happen!

Ellen Leabeater: And, you’ll here how iPads are helping people with intellectual disabilities cope with mental health problems.

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Ellen Leabeater: But first, what do you use social media for? To plan parties, upload photos, find out the best way to tie in a breathing tube? For nurses and doctors working in intensive care units, there is a special online social platform to do just that. It’s called ICU Connect. It goes to show the Internet is more than just cat videos, but a powerful learning tool for clinicians as well. Kaye Rolls is a moderator of ICU Connect and she’s been doing research on the platform for the last few years. Kaye is a doctoral student at the University of Technology Sydney. You’re about to hear what it’s like when you log on to this online space, as Kaye speaks with Ninah Kopel.

Kaye Rolls: You will see what looks like a discussion forum, because we’ve just transferred to a discussion forum. And, you wouldn’t be able to access it because you’re not a member.

Ninah Kopel: You have to be in the club.

Kaye Rolls: You do have to be in the club, yes.

Ninah Kopel: So what’s the advantage of having that sort of closed online space?

Kaye Rolls: The big difference between a closed virtual community like ICU Connect and say Twitter is that it’s a much safer place for people to express themselves, whereas Twitter is all in. Overall, most people don’t want to express or broadcast their opinions. But I’m not one of them!

Ninah Kopel: So what kind of things would you be talking about then?

Kaye Rolls: Anything to do with intensive care practice or delivering intensive care to patients, so most of the time it’s about practices we do like how to run a ventilator, which is the breathing machine for the intensive care patient, or we could talk about how the service is delivered, so how many nursing staff are available, what they should look like… then there’s governance issues like ensuring that practices are safe and how to respond to an emergency.

Ninah Kopel: And what kind of things do people get heated up about? What are the debates usually centred around?

Kaye Rolls: Yes, well, the hot topics tend to be how to tie a breathing tube in. So, about 50% of intensive care patients will have a breathing tube at some time during their stay. And without an airway, you’re going to die. So, maintaining that airway in the correct position is vitally important, and I think it’s because it’s such a bread-and-butter issue, that people tend to… it’s a really hot topic that they talk about.

Ninah Kopel: So people discuss how you put it in? Or what you’re supposed to do? What’s the debate about?

Kaye Rolls: Usually the debate is about the best way to keep it in the right place. So, there are a number of versions to do it. There’s using white cotton tape or medical adhesive tape, or then there’s proprietary products about how to hold it in. And actually, the evidence base is quite limited, but it’s also a very nuanced practice, and there’s no one right answer for this particular practice, which is why there’s a lot of debate about it.

Ninah Kopel: So what was your role with ICU Connect then?

Kaye Rolls: So, I’m the moderator for ICU Connect.

Ninah Kopel: You still moderate?

Kaye Rolls: I still moderate.

Ninah Kopel: What does that involve? Making sure people don’t say things that are too controversial?

Kaye Rolls: Basically, yes. Before we transferred to a discussion forum earlier this year, we used to have to enrol people – take people on or off. And it’s also about looking at how the discussion is going and making sure people stay professional and over the 12 years, I’ve only had to “smack” a handful of people. But it’s never degenerated to the space of trolling or flaming where people are deliberately trying to make people angry or upset or to vilify people. And I think that’s one of the great strengths of the community is that they’re very positive. It’s almost like the conversation you might see at a professional conference. So, someone will present their research or do their presentation and then people will ask questions. And so, it’s a very professional exchange of ideas.

Ninah Kopel: You mentioned those conferences. Why is it important that those spaces exist online? Why can’t it just happen in the real world?

Kaye Rolls: Ah, because conferences cost a lot of money! So, medical conferences and health care conferences are seen as an integral part of maintaining your professional expertise. Unfortunately they cost money to go, so luckily in Australia it will cost you somewhere between $800 – $1200 to go to a conference, but for anyone other than a doctor, that’s actually quite a significant cost. So those conferences are still very important, because that’s where the new science is presented and you get to listen to the keynotes. The value of ICU Connect is it’s always there, and what I’ve found through my research is that’s what the clinicians want to do. They’re wanting to communicate with their professional colleagues who they don’t work with to say, “How do you solve this particular problem?” So the advantage of ICU Connect over and above the professional conference is that you can ask a very specific question, whereas at conferences, you’ll have the big questions asked, which may or may not specifically be yours. And the other thing is that, you know, you suddenly go to a conference and you’re in a room with 5 to 1000 people that you don’t know, and it can be extremely intimidating for most people, so ICU Connect is a much safer place for people to be able to ask what the participants in my focus group called a “naïve question”. So, they feel safe, they can ask that “dumb” question, which they wouldn’t necessarily feel safe to ask in an open environment.

Ninah Kopel: So, you’ve mentioned this research that you’ve been doing and the focus group that you’ve held. Have you identified any things that need work or that need to be changed in your opinion?

Kaye Rolls: The negative things that came up were some of the discussions weren’t as evidence based as people would like them to be. There were perceptions that there wasn’t enough variety in contributions, which actually contradicts my findings, but these were peoples’ perceptions. So, we need to develop some strategies to engender some more evidence-based discussions, and I’ve got a new moderator. I co-moderate now, so we’re thinking about how we can engender or stimulate those conversations.

Ninah Kopel: I’m interested to know where you think this will go in the future. How important will this type of social space be as we do move in towards a more tech-savvy and socially connected world.

Kaye Rolls: It’s an interesting notion. I think in the future there might be a lot more use of close communities on Facebook, and the later literature is sort of pointing in that direction too, definitely for professional purposes. Most people are very passive about social media, and so if it doesn’t work straight away for them, they just sort of forget about it. You’ve got to teach them about the value of it and what it brings for them.

Ninah Kopel: Yeah that was something that came up in your research wasn’t it – about the amount of people who “lurk”? I think you call it “lurking”?

Kaye Rolls: Yes, there’s sort of a 90-9-1 rule: 90% of people will lurk or not post, 9% of people will post occasionally, and 1% of people will post very frequently, and that’s certainly borne out in my research. And when you think about it, if you’re in a classroom or in a professional conference, you will see that reflected anyway in just the normal dynamics of where people are, so most people are not inherently gregarious, and some people when they’re really passionate about something will give voice and put up their hand, and then you’ll have the person who has to say something all the time.

Ninah Kopel: It’s interesting, because you’d think having that online forum would give people who aren’t normally confident to talk in a classroom situation or conference… you’d think it would give them more confidence to ask that question or to post that idea.

Kaye Rolls: Yeah, it does. The psychological research is quite interesting. It depends on the forum and the gregarious qualities that a person has inherently don’t necessarily transfer directly to how much they post online. And it’s the converse with someone who is very introverted. It depends on the forum they’re in. But still for many people, even the smallest challenge will bring them in, and they’re not used to being able to deal with that challenge, and that’s one of the inherent differences between doctors and nurses. Doctors are used to going very tough toe-to-toe – “I don’t want to do this, I don’t agree with you, this is why I don’t agree with you etcetera” and then they have a heated discussion and then they’re friends. Whereas nurses, it’s probably a hold-over from being predominately female and being a secondary member of the team and not being used to that challenging behaviour, so if someone calls you out even in the nicest possible way, some people just feel that that’s a personal attack.

Ellen Leabeater: Kaye Rolls, doctoral student in the Faculty of Health at the University of Technology Sydney.

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Ellen Leabeater: You’re listening to Think:Health on 2ser 107.3, online at 2ser.com or on your favourite podcast app.

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Ellen Leabeater: How do you make sure your body is in the best physical shape for pregnancy? It’s a question not many Australian women are asking, with half of all pregnancies unplanned and many women not involving GPs and midwives until they are already pregnant. This has some worrying consequences, especially if you are overweight, not getting your leafy green veggies or have a chronic health condition, all of which can contribute to making your pregnancy complicated. Researchers are now asking who is responsible for starting conversations with women about preconception care and when is the best time to do it. Dr Amie Steel is a postdoctoral research fellow from the Australian Research Centre in Complementary and Integrative Medicine at the University of Technology Sydney. She’s also Associate Director of Research at Endeavour College of Natural Health. Dr Steel has been looking at what women want when it comes to preconception care.

Amie Steel: Preconception care is a range of health interventions that women and their families and their partners can undertake prior to getting pregnant to improve the health of the Mum during pregnancy, the growth of the baby and the health of the baby after birth.

Ellen Leabeater: So, basically maximising health for Mum and bub?

Amie Steel: Yeah.

Ellen Leabeater: What sort of things encompass preconception care?

Amie Steel: Well the mainstream approach includes anything from screening for existing viral infections and immune things, like making sure people have had their rubella vaccinations beforehand, and doing blood tests to confirm that that’s all active and what have you. Reducing alcohol and smoking prior to pregnancy, getting women to start thinking about how they’re going to manage that during pregnancy if they do drink and smoke so that they’re not exposing the baby to that risk during the pregnancy itself. And also some other things that have been given a lot of support from the World Health Organisation like making sure folic acid status is at a good level, so they’ve got lots of green leafy vegetables or they’re taking folate tablets.

Ellen Leabeater: Where do women get this information from to help maximise their healthiness during pregnancy?

Amie Steel: Well I guess that’s the question. There’s not really a good answer. So, I’ve just undertaken a review that’s looked at that information and we’ve basically found that all the health professionals identify that it’s important. The GPs are probably best placed to talked to women about this, but they don’t feel that they have enough training to really have good quality conversations with women about the intricacies of it or the time to do anything more than just ask for a few tests and recommend that they stop smoking. There’s a bigger conversation that needs to happen, there’s good evidence for a whole range of things being important in the preconception period that GPs don’t necessarily have the knowledge or the time to have conversations with women about, so I don’t think there’s a really good answer for that.

Ellen Leabeater: That fifteen-minute consult isn’t enough to give women all the information they need…

Amie Steel: No, that fifteen-minute consult is not enough and the other side is that a lot of GP consultations are patient-driven, so you sit down in front of the GP and the GP says, “What can I help you with today?” The GP is not thinking, “and while you’re here – you’re a healthy young woman and you might be getting pregnant in the next two years. Let me talk to you about pre-conception care.” That just doesn’t happen! And even for patients with chronic health problems that they’ve been managing all of their life like Type 1 diabetes where they have regular appointments with the doctor and they’re coming into an age where they’re more likely to be looking to become pregnant, the doctors are still not having those conversations with the women very frequently, and the question is how do you best prepare women when the doctors aren’t leading the conversation and the women don’t know to ask.

Ellen Leabeater: So who’s left apart from the Internet?

Amie Steel: That’s pretty much it, and I think that the problem is that women don’t know that this can even happen. We’re not even educating women that preconception care has value, that other than taking folic acid – which seems to be getting out there a little bit – there’s a bunch of other things that people can be doing. Even reducing alcohol and cigarette use – people think about it as something you do during the pregnancy, but there’s actually good evidence that not having alcohol or cigarettes three months before getting pregnant is also important for the health of the placenta which effects the blood flow to the baby and its nutrients and its growth and everything that’s associated with that. So that information is just not getting out there, and we actually need some responsibility within the health service delivery to make sure that someone takes that responsibility.

Ellen Leabeater: You mentioned there that it’s good for the placenta. Are there any other benefits that come from good preconception care?

Amie Steel: There are a number of health complaints that women can develop during pregnancy which are less likely to occur if they have good preconception care. So there are things like gestational diabetes, preeclampsia, even just weight gain and obesity… there are a number of different things for the mum but also for the overall development of the baby. There’s growing evidence that even as babies mature, that if they’ve had these good healthy starts, then they’re much more able to be healthy and successful young people as they grow up.

Ellen Leabeater: Your recent paper has looked at the attitudes of women and health professionals to preconception care. What are women’s’ attitudes to preconception care?

Amie Steel: Mostly the women who access preconception care don’t feel like they’re getting the sort of care that they need. They don’t necessarily feel as though the information that they need is available, they don’t know where to go to get the information, and probably the most important finding out of my review is that we don’t know enough about that, because no one’s bothered to ask them. Most of the research that’s been done that looks at attitudes and perceptions towards preconception care has asked the health professionals what they think should be happening, but there’s only been four papers ever published that actually looks at what women think should be happening and what they’re looking for, where they’d go, who they’d feel comfortable talking to, and the sort of information and support that they need to make the changes in their life.

Ellen Leabeater: And what are the women saying they’d like to see?

Amie Steel: The biggest thing they’re looking for is holistic care and time and support in making lifestyle changes, and good clear information about what they need to do.

Ellen Leabeater: Does anybody offer that care?

Amie Steel: No, not as a specific service, and certainly not to generally healthy women. There are little pockets that are set up for specific health complaints, so going back to my example of Type 1 diabetes – there will be a specialist service set up for patients with Type 1 diabetes if they’re thinking about getting pregnant to go and have specialised preconception care support and thyroid disorders and things like that. But even understanding that, pretty much all the research in chronic health is focused on Type 1 diabetes, and yet there’s a list of six, eight or ten conditions that are known conditions that need preconception care support, and we haven’t even bothered to research what women are looking for or what they want out of those conditions. There’s not a single study looking at thyroid disorders and what women with thyroid disorders want.

Ellen Leabeater: And the health professionals? There’s seems to be ample evidence… what do they think preconception care means?

Amie Steel: They think it needs to happen. They agree that preconception care is important. Health professionals are very aware of that, but they aren’t really clear who should be providing that information. Midwives are saying it’s not their job or their place because by the time they see women, they’re already pregnant. Community health nurses are happy enough to do it, but again, mostly women are accessing them postnatally, so they can provide what’s often called inter-natal care, which is “I see you’ve had another baby, I’m not sure if you’re thinking about having another one, but if you are, there are some things you could probably be doing in preparation.” So it’s primarily coming back to the general practitioners again, and they identify that it’s important but they don’t know that there’s a place for it, and I think that this is the gap that we’ve identified. We’re looking at other practitioners – is it pharmacists who are providing much more community-level care and people just come in and ask questions who might be able to have those conversations? Is it complementary medicine practitioners? We know that women are more likely to use them, and that women who are pregnant are using them and women are actually going to them for a lot of fertility related complaints as well. So, it may be that they’re a health resource that we can be tapping into to help support good preconception care, education and support.

Ellen Leabeater: Dr Amie Steel, postdoctoral research fellow from UTS speaking about preconception care for Australian women.

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Male: You’re listening to Think:Health on 2ser 107.3

Ellen Leabeater: Having an intellectual disability might mean you see the world a little bit differently to other people. Social situations can be harder to navigate and day-to-day task can be difficult. On top of these challenges, up to 50% of people with an intellectual disability will have a mental health issue. So what can we do to make sure people with intellectual disabilities are getting the help they need? To find out, Ninah Kopel spoke with Dr Lynette Roberts, a clinical psychologist and researcher in mental health at the University of Technology Sydney. She started off by explaining exactly what an intellectual disability is.

Lynette Roberts: An intellectual disability means you have deficits in intellectual functioning, in inductive functioning – so these are kind of life skills like making friends or paying bills – and these kind of difficulties start in early development, so in the first few years of life. So that’s a life long condition if you have an intellectual disability, and about 3% of the population will have an intellectual disability. What my research is looking at is within this population, what are the rates of mental health illness and what are the types of treatments that are available, because we know that individuals with intellectual disabilities are more vulnerable to developing a mental health difficulty like depression or anxiety, so they’re actually more vulnerable than you or I. But tragically, there’s less access to treatments and specialist services, so to put it in perspective, there are some studies that show up to 50% of people with an intellectual disability will also have a mental health illness, and there are some studies that are showing only about 10% of people will access treatment.

Ninah Kopel: And do we know if that ‘s the stress of having the intellectual disability or if it’s just something that is a coincidence? Do we know what the link is?

Lynette Roberts: Yeah, there are a few different ideas and there are a few different research studies speaking to that. There could be a genetic component that makes you a bit more vulnerable, but I like what your saying about the idea that if it’s already quite stressful trying to understand and navigate the world around you, understand social interactions… if certain life experiences can be confusing, that can lead to feeling more anxious and more depressed, and there are also individuals with intellectual disability can be more vulnerable to experiencing really negative kind of life circumstances that can lead to mental health issues like homelessness or abuse or neglect and things like that. So, there are a number of different things that could contribute.

Ninah Kopel: And how prepared a medical teams and doctors to respond to those mental health issues?

Lynette Roberts: I think it varies. Some people have access to fantastic specialist training, however I think it’s probably not as widespread as we would like to see. So it can be confusing and it can be stressful for everyone involved if you have an intellectual disability and you’re struggling to express yourself and make yourself understood and other people around you are not really sure what’s going on – it can be very confusing, very overwhelming and we find that people can sometimes bounce between services. So, you know, that’s not a health issue, that’s a disability issue, no, that’s not a disability issue, that’s a health issue… so I think a lot of those issues can come up.

Ninah Kopel: So talking about that bouncing between a disability and a mental health issue, are there any tools we have to connect the two?

Lynette Roberts: Yeah, so I think what’s really important is increasing awareness. So, increasing awareness of mental health practitioners, of families and cares that if they are working with a person with a mental disability that they can be more vulnerable to mental health difficulties. And I think in addition to awareness, what we really need to be doing is working more on improving treatments, so putting more funding into research in that area and then disseminating the results of that research, so that people are more aware of what effective treatments look like, how you implement them, how you can go about that. So that’s some of the stuff that my PhD students are looking at currently. So, we’ve just run a survey looking at mental health practitioners and counsellors across Australia trying to get a sense of how confident they feel working with people with intellectual disabilities. And she found some interesting results. So in general, while a lot of psychologists and counsellors in Australia feel confident to listen, to be empathic, to kind of have those general counselling skills, they don’t feel very confident assessing or treating individuals with intellectual disabilities. And part of that can be a result of not as much specialist training and also maybe a lack of information about what treatments do work, and also a lack of research about what treatments do work.

Ninah Kopel: So you and the teams you’re working with are looking at some anxiety treatment programs. So what are some of those programs?

Lynette Roberts: So, we’ve done a lot of work looking at standard psychological therapy. So if you or I had an anxiety disorder and went to see a psychologist, we would just generally get something called CBT or cognitive behaviour therapy. It’s a really effective, evidence-based research that looks at how you think about things, how you act in situations and how if you can do important changes in how you think and act, you can help manage and reduce your anxiety. So it’s about thoughts, feelings and behaviours. So we know that’s really effective for the typically developing population, but we don’t really know too much about how we can adapt that for people who have intellectual disabilities. So that’s exactly what my team has been looking at. We’ve done some work adapting that kind of treatment for adults with intellectual disabilities who are having anxiety and we found that it was quite effective, so we’re publishing that at the moment and giving our recommendations to other practitioners on how they could do a similar thing. And my PhD student at the moment is focusing her 3-year PhD on exactly that question, but with children and adolescents. So it’s not necessarily about reinventing the wheel. We know a lot about effective treatments, but it’s about how we make those treatments work best for children and adults who have an intellectual disability.

Ninah Kopel: Do you have any examples of how a question might change or how a conversation might change from one with an average person to someone with an intellectual disability?

Lynette Roberts: Yeah, I’ve got to get my therapist voice on! So if I was working with an adult who didn’t have an intellectual disability, in a way, we’d be talking about quite a lot of abstract concepts like when you’re in “that” situation or when you meet somebody new, what thoughts are going through your head, what are the anxious thoughts you’re having, how realistic are these thoughts, are you catastrophising right now, what’s the best case scenario, what’s the worst case scenario… So it’s a lot of discussion and dialogue around how realistic or helpful those thoughts are, and that’s very helpful, but it’s also quite abstract. So what we do with people with intellectual disabilities is we take the core concepts and reduce it to straightforward direct questions and we use the metaphor of red versus green traffic light thoughts. So what I mean by that is instead of kind of talking about is this a helpful thought or realistic thought, I might say that a red traffic light thought is a thought that makes us feel anxious, it makes us feel stressed, it makes us stop. A green traffic light thought is a thought that’s more helpful, more calming and helps us kind of go ahead with our lives. So, when you’re in that situation, is it a red traffic light thought or a green traffic light thought? So we change how we introduce things in a way that makes more sense, but at the core of it, it’s the same general idea – that how you think about things is important and if you change that you can change how you feel.

Ninah Kopel: And then how does that change for kids and adolescents?

Lynette Roberts: With kids we’re a lot more interactive, we bring in cartoon characters, super heroes, we do a lot of role-play, we’re acting a lot of things out, we make it really interactive… We’re looking at putting it on an online space, so increasing accessibility across Australia and hopefully internationally. So I think what’s important is that it’s the same core idea that we know works in anxiety, but it’s making it more age appropriate and more developmentally appropriate.

Ninah Kopel: I think that online space is still a work-in-progress, but do you have any ideas of what it would look like?

Lynette Roberts: Yeah, so we were very lucky to get some great funding from the James N. Kirby Foundation to support us in that area. What we’re looking at is taking some of the key ideas from the treatment program that we’ve developed – so maybe say three or four key strategies – and we’re really focusing on presenting it in an accessible, fun, interactive way so that children can practice it online, practice it with their teachers, practice it with their parents and kind of really consolidate the work they’d be doing face-to-face in treatment, so being able to practice it outside. That’s one component of it. There’s also the accessibility component. So, not everyone is going to be able to come in for, say, some of our trials and go through the treatment, but we’d still want them to access some of the findings that are coming out of it.

Ellen Leabeater: Dr Lynette Roberts, clinical psychologist and researcher in mental health at the University of Technology Sydney.

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Ellen Leabeater: If you’d like to find out more about that story or anything else you’ve heard today, head to 2ser.com/thinkhealth. Think:Health is available wherever you are. You can search “Think Health” on your favourite podcast app. And, if today’s show has raised any questions with you, go and see your GP. This show is produced with the support of the University of Technology Sydney and 2ser. I’m Ellen Leabeater, thanks for your company.

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