How do you work out when you should and shouldn’t go to hospital during a chronic breathlessness crisis? And, breastfeeding habits among Arabic women. Finally, what’s the link between mental health and risky sexual behaviour among adolescents?

https://soundcloud.com/thinkhealth/38-chronic-breathlessness-breastfeeding-in-arabic-women

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Speakers
Sue – Breathlessness suffer
Tim Luckett – Senior Lecturer, Faculty of Health University of Technology Sydney
Amanda Rehayam – Clinical midwife and honours student at the University of Technology Sydney
Brian O’Donoghue – Consultant Psychiatrist and Clinical Research Fellow at Orygen, the National Centre of Excellence in Youth Mental Health

Presenter/Producer: Ninah Kopel
Producer: Ellen Leabeater

START OF TRANSCRIPT

Ninah Koppel: Hello and welcome to Think:Health, I’m Ninah Koppel. Today on the show:

Amanda Rehayem: Their mothers breastfed, their grandmothers breastfed, their sisters breastfed and their aunties breastfed – and the common theme in that is women.

Ninah Koppel: We look at breastfeeding as a cultural practice in the Arabic community.

But first: stop for a second to think about your breath, the air coming in, filling your lungs, exhaling. It’s something you do all the time, and if you’re like most it’s easy, thoughtless. But imagine that now you had to draw all your air through a straw. Just think how much less oxygen you’d be able to get in and how much less CO2 you could get out. For people with chronic respiratory conditions, this is what breathing feels like, and the constant breathlessness is further punctuated by crises where breath seems almost unachievable.

Sue Griffin: Do you swim? Surf?

Ninah Koppel: Yeah, sure.

Sue Griffin: Sure. Right… (fade out)

Ninah Koppel: This is Sue Griffin. And I’m calling Sue in her home where she’s comfortable and she has oxygen close at hand. She suffers from breathlessness and says a bad attack can feel a bit like when things go wrong during a swim or surf.

Sue Griffin: …And then you start to try and get out of that water and you are trying to reach the top and reach the air and your breath is getting shorter, your lungs are getting tighter.

Ninah Koppel: For some time, Sue didn’t know why she was breathless.

Sue Griffin: Initially, doctors classed it as a cold.

Ninah Koppel: Then bronchitis…

Sue Griffin: Then it was pneumonia.

Ninah Koppel: When Sue went back to the GP, they basically said to get to the hospital.

Sue Griffin: Do not pass Go, do not collect $200.and go and get some air.

Ninah Koppel: Before then Sue worked in office management, but her issues with breathing put an end to her career.

Sue Griffin: I went from virtually being a capable, working person, good at my job to being bedridden in hospital within 2-3 weeks.

[Music plays]

Tim Luckett: So chronic breathlessness really is breathlessness that really doesn’t go away despite the optimal treatment of the underlying disease. It’s very common in diseases like COPD, which is chronic obstructive pulmonary disease. You also get it with lung cancer and with asthma of course as most people would know.

Ninah Koppel: This is Dr Tim Luckett. He’s a senior lecturer in the Faculty of Health at the University of Technology Sydney.

Tim Luckett: If you think about having breathlessness everyday, even when you try to do the most minimally stressful things like hang the washing out or even walk to the bathroom for some people, you can imagine how that would reduce your world, your ability to go out, to engage with other people… just to do the everyday things that we all take for granted.

Ninah Koppel: Tim and a team of researchers are looking at breathlessness to investigate the profound impact it has on people’s lives from a mental and a physical health perspective. But apart from the heavy burden breathlessness can put on people’s health, it can also have a really heavy burden on the health system.

Tim Luckett: …People going to emergency for when they experience what’s called a breathlessness crisis on top of their everyday chronic breathlessness. So, that’s when people get a spike in their breathlessness. They often panic and they go to emergency. An interestingly the research suggests that about half of those ED presentations are avoidable if people had better support in the community and had better self-management strategies in place.

Ninah Koppel: COPD or chronic obstructive pulmonary disease is actually the second most common cause of avoidable presentations in Emergency Departments. What Tim wanted to know is whether breathlessness sufferers themselves had the power to change this.

Tim Luckett: Our most recent research project has been talking to people with breathlessness every day, who experience these spikes or crises and who have had experience of avoiding one or more ED presentations, and most importantly, were glad in hindsight that they did avoid it – and I should emphasize that sometimes of course, you do have to go to hospital with these breathlessness episodes, and it’s trying to figure out the times that you should go and the times that you shouldn’t – the warning signs, the factors associated with those. That’s really of major interest.

Ninah Koppel: Sometimes with breathlessness, hospital is the answer. Though what Tim is saying is that at other times, with the right tools, some people do manage to tackle their crises at home.

Tim Luckett: It’s very difficult to avoid a crisis completely. What you may be able to do is to knock that crisis on the head fairly quickly, reduce it escalating rapidly, getting worse, getting into this vicious cycle with panic, which then makes the breathlessness worse, which then makes the anxiety worse, and then actually take a cool, calm collected approach to deciding whether or not you need to go to Emergency, really based on whether you’re able to self-manage that breathlessness by yourself.

Ninah Koppel: And are people able to do that?

Tim Luckett: Well, that’s what’s really incredible about these people we talked too. I really gained some new heroes through this research because the ability of some of these people – the expertise they have in self-monitoring, in separating the distress component from the severity of breathlessness component – was really quite amazing.

Ninah Koppel: That’s what’s really cool about this study. You have researchers going to the patients to talk to them about their expertise and to see if they can help them help others to handle their breathlessness. One of these experts – one of Tim’s new heroes – is Sue.

Sue Griffin: I get up and I start doing things and, you know, I’m thinking everything’s good and everything’s well in the world, and I’ll be putting stuff out and what not, and as I do it, my oxygen levels deteriorate and deteriorate and I don’t pay attention. That’s not good. Then it gets to a point where, yeah, I feel OK but I’m really not. And what happens with the brain – my brain – in my opinion anyway –is that my brain starts to deteriorate to a level that doesn’t quite understand that I need more oxygen.

Ninah Koppel: But Sue has developed strategies to handle this. She knows what to do.

Sue Griffin: I can bring myself back by sheer determination – I use this term breathe in the roses and blow out the candles, which a lot of people with breathlessness use. And what it does is, you breathe in the rose through your nose to get the perfume. You then get past that and you have to breathe out. Now that breathe-out is actually more important than the breathe-in, because you have to be able to get the carbon dioxide out so you can get the oxygen in. And if you don’t do that, you’re not going to succeed in your recovery at all.

Ninah Koppel: But this type of resilience isn’t something that Sue’s had to develop now that she’s had this problem with breathlessness. It’s the same skills she would employ if she was having a bad day at work.

Sue Griffin: I’d be thinking, you know, I’m having a really rotten day and I’m sick of people, I don’t want to do anything, I’m better off leaving this office for ten minutes to go downstairs and do some meditation or whatever. And then I come back as a human!

Ninah Koppel: And Tim found this with a lot of the people who responded to breathlessness – that they’re actually really special.

Tim Luckett: They were able to look on these types of problems as challenges. They rose to the challenges. These were kind of super people.

Ninah Koppel: Having talked to Sue, I agree with Tim. She is a super person. A super person who’s been faced with some really heavy burdens.

Sue Griffin: …And they said, “All right, now we’re at this stage where lung transplant is the only solution for your disease.” And I kind of went, “Well that was a bit of a backhander!” And we talked about it a bit, not much really. And the doctor just said, “Is there anything else you need to know?” And I said, “The doctor across the road just told me I have cancer.” And he said, “Sorry, you can’t have the transplant.”

Ninah Koppel: You can’t have the transplant?

Sue Griffin: No.

[Music plays]

Ninah Koppel: This year, Sue was told there isn’t much they can do about her cancer either. They sent her home to be with her family and to receive palliative care. But her experience with breathlessness has made her really keen to help others – to share her experiences.

Sue Griffin: I look at others who have got problems and I kind of feel like going and tapping them on the shoulder and saying, “Look, hate to be a bother, but…” (laughs)

Ninah Koppel: (laughs) Yeah, you sound like you’ve had a really rough year. The way that Tim explained this to me – he made people like you sound exceptional… that in the face of an attack of breathlessness, you are rational enough to help yourself. Because it is scary…

Sue Griffin: It is..

Ninah Koppel: But you’re the exception right? A lot of people might not be able to develop the strategies that you’ve developed.

Sue Griffin: That’s concerned me, and I thought… When I started to come out of that area of not being totally rational about how to breathe with the techniques that are required, I started looking for people, groups, support groups, anything that would help me learn that. I couldn’t find any. I could not find anybody who could support me to help me learn how to exist to the next level.

Ninah Koppel: And this is exactly what Tim is trying to fix.

Tim Luckett: We do need more pulmonary rehabilitation services to be accessible to people with COPD and other respiratory conditions to help them learn these types of strategies. And the other thing I guess to stress is that we really need more research into understanding this vicious circle between breathlessness and then the distress and the panic that that causes – about how they make each other worse and go around and around in circles. That’s really not very well understood. We need to know where are the critical points where we can intervene to help people break that vicious cycle and actually stop themselves from escalating out of control.

[Music plays]

Ninah Koppel: There is no fail-safe strategy for dealing with breathlessness. But the information Tim got from experts like Sue means we are one step closer to helping people to break the cycle of panic.

[Music plays]

Ninah Koppel: And if that story raised any concerns for you, you can contact lifeline on 13 11 14.

[Music plays]

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

Ninah Koppel: After weeks of trying you finally get the hang of breast-feeding your new baby. And you’re proud, except your mother-in-law still says your baby looks too skinny. A small study from the University of Technology Sydney has found that this is the sort of pressure Arabic women experience from their community when breastfeeding. It’s a balancing act of different priorities. On the one hand, breastfeeding is seen culturally as being best for the baby, but on the other, many Arabic mothers and grandmothers suggest formula for big healthy babies. Amanda Rehayem is a clinical midwife and Honours student at the University of Technology Sydney. She spoke to Ellen Leabeater about her research.

Amanda Rehayem: Breastfeeding is definitely a hot topic in both research and midwifery in general. Obviously you see the signs in the hospital and the kind of push towards “breast is best”. It’s so important both for mum and baby, and all the emerging research is saying that it’s a form of feeding that will impact a baby through to adulthood.

Ellen Leabeater: So your research is looking at how Arabic women view breast-feeding and infant feeding. How is breast-feeding viewed in Arabic cultures?

Amanda Rehayem: So, for the women – it’s a small cohort of women of about 17-19 women that took part in the focus groups in my study – they viewed it as a culturally normal thing to do. Their mothers breastfed, their grandmothers breastfed, their sisters breastfed and their aunties breastfed – and the common theme in that is women. So it was more often “women’s work” or women’s ownership of breast-feeding, and that came with this parenting knowledge. Women learnt that if the baby is sick, just pop the baby on the breast; if it

is fussy, just pop the baby on the breast… that was something they kept repeating.

Ellen Leabeater: And where does this belief stem from?

Amanda Rehayem: For Arabic women specifically, a lot of it is passed down by family members obviously. It’s socially known as well. A woman will often say in the clinic where I work as a midwife – whether they’re Arabic or Chinese or any other culture – the first thing they say is, yes, I would like to breast feed. It’s very rare that you hear a mother say, no, I’m just going to bottle feed. Some do, and that’s perfectly fine because it’s the woman’s choice, but it’s just this – it’s socially, culturally and, for the Muslim women in my study – it was religiously indicated for them to breast feed.

Ellen Leabeater: Really? So where is it religiously indicated?

Amanda Rehayem: Yeah, so, in the study, I had a group of Muslim women – around 9 who took part in the focus group – and they mention that in the Quran it suggests that women should breastfeed for two years if they can.

Ellen Leabeater: The same as the World Health Organisation’s guidelines.

Amanda Rehayem: Yeah! So, they regularly brought up that Islam is this defining factor for them in their decisions and desires to breastfeed. Obviously there were women in that group that couldn’t breastfeed – they had to supplement their babies with formula, and that was OK as well. And they did mention that if you cannot do it mentally or physically, it’s not something that they’ll punish themselves for or anything negative like that.

Ellen Leabeater: That’s kind of interesting, because I think in Western society, there’s a lot of stigma attached to women who formula-feed because they aren’t able to breast-feed or choose not to breast-feed, but are you saying that in Arabic and Muslim culture it’s OK if the mother makes that choice not to breast feed.

Amanda Rehayem: Definitely. The mothers actually brought up a point that was very recurrent in all three focus groups that there is a massive social push towards breast-feeding, both in the hospitals and outside of the hospitals. Even sitting in the waiting room, a mother mentioned that she was formula-feeding her baby and her baby was a bit ill, and she could hear the mother mentioning that, you know, if you breastfed your baby, it wouldn’t be that sick. That’s a bit concerning that women are being put under such pressure to breast feed at all costs. The women mentioned that it’s such a massive social push, more than a cultural push. It’s not just an Arabic thing, it’s in the wards from when they first have their baby. It came up in the discussions: are we giving women an option to breast-feed or bottle feed? Are we really informing them that it’s OK if you cannot breastfeed? Because there are other options – we can help you, we can give you that information and support you through that, so that they’re making informed consent.

Ellen Leabeater: And it also came through in the study that there’s this belief that a healthy baby is a big baby.

Amanda Rehayem: So, the women mentioned that “healthy, fat baby” theme. And as Arabic woman – both my parents are Lebanese – I totally got that. When the women mentioned it, I thought, yes, that’s exactly what my Mum and Dad say, or my Grandmother says. They’re like, “Keep eating! Keep eating! You’re not full!” And they give you two platefuls of whatever meal you’re having.

Ellen Leabeater: And that’s quite a thing in Lebanese culture – the food.

Amanda Rehayem: Definitely, yeah. And you think, does it really apply to babies when they’re just born? Their stomachs are so little, you know, they’re not going to eat two plates of tabouleh for lunch. Women kind of had a giggle and said, “Yes, my baby is a normal weight, healthy, exclusively breast-fed and four months old, yet my mother and my mother-in-law always push for me to give it formula.” If the baby cries, give it more food, give it formula, look at him, he’s hungry, he’s too skinny, blah blah blah. It was actually quite funny, but it’s an important theme. In the view of older Arabic mothers, mother in laws and maybe fathers, a skinnier baby or an exclusively breast-fed baby was not… if the baby is not fat, then it’s not healthy.

Ellen Leabeater: That’s kind of an interesting comparison because there’s that big promotion of breastfeeding, but at the same time, they’re saying the baby needs to be fat.

Amanda Rehayem: Yeah, yeah definitely, because a lot of the mothers were from their late 20s to their early 30s and they would mention that their mothers – it was like the generation of formula being the saviour. So, that older generation of Arabic mothers would come in and be like, “Just give it the bottle, it’s going to keep crying, it’s easier for you, it’s easier for your partner, it’s easier if you want to go for work, and, to top it off, they’re going to put on a lot of weight”… whereas if you’re breastfeeding it “haram”, it’s not getting enough nutrition – it’s not getting enough milk.

Ellen Leabeater: Pregnant women and new mums. They always look towards their mothers and grandmothers for guidance more so than anybody else. Does that concern you as a midwife that their parents and grandparents are giving them the formula advice?

Amanda Rehayem: It’s not overly concerning – I actually love when the mothers and the grandmothers and the aunties all come into the labour room or postnatal room and contribute. Sometimes they can give contradictory advice, but it’s up to us as clinicians, midwives, nurses and lactation consultants to inform the woman enough so that she makes that educated decision that breastfeeding is going fine, that my baby is healthy, settled, a good weight. Do I really need to give it formula to make it stop crying during the night or something like that? And that’s why we try as best as we can to educate the women antenatally as well.

Ninah Koppel: Amanda Rehayem – a clinical midwife and honours student at the University of Technology Sydney talking with Ellen Leabeater.

[Music plays]

Female: You’re listening to Think:Health.

Male: On 2ser 107.3.

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Ninah Koppel: Being an adolescent is all about experimenting with sex and sexuality. But throw depression and psychosis into the mix and things can get a bit messy. A new study Orygen, the National Centre in Youth and Mental Health, has found that adolescents engaged in mental health services are engaging in high rates of risky sexual behaviour. This is defined as unprotected sex, and multiple sexual partners. But interestingly, the participants also complained of sexual dysfunction as a result of medication. Brian O’Donoghue is a consultant psychiatrist and clinical research fellow at Orygen. He spoke with Ellen Leabeater.

Brian O’Donoghue: Essentially how this project came about is that I work with the early psychosis service at Orygen Youth Health and what we saw clinically was that one of the side effects of medication can be sexual dysfunction. So a number of young people that were being treated with anti-psychotic medication were then, when asked about it, unfortunately experiencing sexual dysfunction. So my colleagues and I looked at this and we looked at the literature in terms of how we could support people and manage it and what support strategies could be used to reduce the side effects. And when we looked at the literature, firstly we found that there was very little on it, and then we also looked and found that actually, sexual health is a much broader topic that includes lots of other things like high-risk sexual behaviours. Also we found that this wasn’t specific to psychosis, but it’s also related to other mental health disorders like depression, anxiety and personality disorders as well. So, what we decided to do was just do a large scoping study essentially, and ask very general questions about sexual health for the young people that attended our health service. So we did a study earlier this year, and it was two medical students – Elizabeth Macmillan and Asiel Adan-Sanchez – who did the interviews. They interviewed 103 people who were attending the service, and were affected by mental health disorders.

Ellen Leabeater: And what sort of questions were you asking them?

Brian O’Donoghue: It was a questionnaire that had been done with secondary students, and that had been devised by the Archers service in La Trobe. They’d devised questions about sexual health, and we looked at those questions, took some of them and then added in other ones. But we were essentially asking people about whether or not they’d been sexually active, their first age that this person had engaged in sexual activity, but also about the frequency of this activity, and also what contraception had been used as well.

Ellen Leabeater: And that’s an interesting one about contraception. I believe a lot of the people who were attending mental health service in this study weren’t using contraception.

Brian O’Donoghue: Yeah, that’s right, and I suppose that was one of the findings we were quite struck by. Under 40% of people were using barrier contraception regularly, which meant that over 60% of people were potentially exposed to STIs if they didn’t know the history of their partners. And also less than 40% were using non-barrier contraception, which meant that actually around 37% of people weren’t using any regular form of contraception.

Ellen Leabeater: Do you think now as mental health services, we need to be discussing sex with young people and contraception?

Brian O’Donoghue: Absolutely. I think one of the things… there’s been a real shift now in mental health services that we now focus on the physical health or people with mental health disorders. You can’t really separate the two – so physical and mental health are so intertwined and connected. But also within that, we have to include sexual health. So from our study, we found that young people are more sexually active, are at a much higher risk of high-risk sexual behaviours and there are also consequences – there’s unplanned pregnancy or exposure to STIs. So really, the other thing we know is that young people who attend mental health services, aren’t necessarily attending GPs or other services. So if this service is an opportunity to intervene and at least preen for these behaviours and these conditions… because if we can identify them, we can link people in with the appropriate services.

Ellen Leabeater: So, what’s the link between high-risk sexual behaviour and mental health problems?

Brian O’Donoghue: Firstly, I suppose we know that adolescence and early adulthood is a high-risk period of time for development of mental health disorders, but also it’s a period of time for high-risk sexual behaviour. So ultimately it seems there’s an interaction between the two. People who develop mental health disorders are more vulnerable to engaging in high-risk sexual behaviours.

Ellen Leabeater: And that’s interesting because you mentioned that the psychosis medication actually makes you likely to want to have sex, right?

Brian O’Donoghue: Yeah, that’s right. So the two are kind of in contrast. And it’s also… with the sexual dysfunction, the anti-psychotic medication does impair that, but there are other medications as well like anti-depression medication… But also, disorders – say if someone is depressed for example – can lead to decreased motivation, decreased enjoyment and psychosis, so the connection between the two – sexual health and mental health – is quite complex, because there are a number of factors that relate to each other. But you’re right. A couple of things came out of the study: one is the high-risk sexual behaviour, but the other is the high-prevalence of sexual dysfunction. Nearly 40% of the young people we interviewed have clinically relevant sexual dysfunction. That’s actually quite a high level. Nearly all young people endorsed one item on the questionnaire asking about sexual dysfunction. That’s another factor – the other thing we asked about was young people’s subjective experiences around their interpersonal relationships and their romantic intimate relationships, and what we found was that if they had sexual dysfunction, they were more likely to describe kind of negative, subjective experiences around sex. So, I suppose there are lots of things going on and the reasons are complex, but there’s also another factor that’s prevalent: while young people are more likely to engage in high-risk sexual behaviours, they also experience sexual dysfunction.

Ellen Leabeater: And what’s been the reaction from the young people you’ve spoken to about discussing their sexual health and mental health.

Brian O’Donoghue: Yeah, well one of the things we were very struck by was our very high consent rate, so over 70% of people that we asked to participate in the study agreed to take part, and we were asking very intimate questions. Really what the medical students who conducted the interviews fed back to me was that young people are very open about this. It was something that they wanted to discuss, because it is a very important aspect of their life. And the other thing that was striking about this study was the huge support we received from the commissions working in service. They were very keen for the study to take place and they also wanted to see the result of it. I think it’s been seen very clearly that sexual health and mental health can’t be divided – there’s a big impact from both in both directions. So really, young people were keen to talk about these issues. I think sometimes there can be barriers with research commissions being embarrassed about asking these questions and there’s a bit of uncertainty about whether or not mental health service workers should be addressing sexual health.

Ninah Koppel: Brian O’Donoghue speaking with Ellen Leabeater. And once again, if that story has raised concerns, call Lifeline on 13 11 14.

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Ninah Koppel: If you’d like to find out more about Think:Health, head to our website at 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 Ninah Koppel, thanks for your company.

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