 Welcome everybody to tonight's MHPN webinar entitled Disenfranchised Grief, Mental Health Impacts of Infatility and Interdisciplinary Response. Welcome everybody to joining us online tonight and for those of you joining our podcast, this is a webinar and part of MHPN's inaugural online conference which has had over 7,000 registrations which is really exciting. I'd like to begin by acknowledging the traditional owners of the land on which our webinar presenters and participants are located and I would also like to pay respects to elders past and present. Hi, I'm Ebony and I will be facilitating tonight's webinar. I'm a rural generalist based in Cooktown in Far North Queensland and I have advanced skills in mental health and addiction. I'm really excited to learn with you and with our panel tonight about I guess the mental health impacts of infertility. It's something that comes across my desk not infrequently and I think we have a lot to learn and a lot more that we could be doing in this space. Without further ado, we have an excellent panel joining us tonight and I'll introduce each of them individually. First we have Professor Jane Fisher who's based in Melbourne. Jane is an academic clinical and health psychologist. She works in global public health and women's health particularly at Monash University and she has special interests in women's reproductive and mental health and how these can be addressed and prevented. Welcome Jane. Thank you very much. You're down in Melbourne, how's the weather down there? We're experiencing crisp winter weather now. How cold is it? I think today it got right down to about three or four first thing this morning so definitely we've made the transition. I think so for sure. Welcome, Jane. Thank you. Next I'll introduce Miss Denise Danasi. Denise is a fertility nurse based in the Sunshine Coast in Queensland, my state, and has extensive experience in assisted reproduction. She's opened a couple of clinics herself and more recently an elective ultrasound service that's devoted to improving the relationship early while still pregnant relationship between families and the child. She's currently working as an advanced practitioner delivering assisted reproductive technologies to her patients in the clinics that she worked in. Welcome Denise. I think Denise might have dropped out there so we might move on. Oh no, here she is. Welcome Denise. Oh no, we can't hear you. Alright, I'll come back to you. This is Queensland which is not so sunny today but not as cold as Melbourne. Oh yes, we can hear you now. Awesome, thank you. Thanks very much. Sorry about that little technical glitch. No, not at all. Fantastic. So I guess what I'd like to say to everybody is that the presentation that we're seeing tonight is very, very familiar in fertility clinics. We see something like this on a daily basis badly. Definitely. Oh, thanks Denise. We're going to introduce Carolyn first. Sorry. And I've got a bit more orientation too. I missed the first. We'll come back to you soon. Yep, sure. That's alright. Welcome. Thank you Carolyn. Thank you very much. You're in Melbourne too. So your experience in the cold starts. Yeah, that's true. Although it's a bit of a relief to be honest. We've had a very, a very climate change kind of awesome. So it's nice to see a bit of rain at last. Definitely. So Carolyn is a psychiatrist based in Melbourne. And is the Victorian director of advanced training in consultation liaison psychiatry. And she has a special interest in perinatal psychiatry particularly is completing a PhD on the subject and works clinically in the field. So again, an excellent spread of expertise to help us on our journey and learning more towards about infertility tonight. Welcome again, Carolyn Denise and Jane. Thank you so much for joining us. Thank you. So this webinar is part of the online content stream grief and loss. And it's one of three content streams that's part of the online inaugural MHPN conference, Working Better Together. The other two content streams are mental health and the military experience and trauma the impacts of adverse childhood experiences. Tonight's webinar will explore the relationship between grief, loss and mental health in people experiencing infertility. Just some orientation and housekeeping for our participants this evening to access the chat box. Click the open chat box tab on the bottom of your screen. The chat box will open in a separate tab. Supporting resources, including the slideshow from tonight, the ground rules, the vignettes and the relevant resources recommended by our panelists are found in their resources tab at the bottom of your screen as well. If you have any technical difficulties, please click on the technical support frequently asked questions tab to help with your technical issues. And we encourage you to of course provide feedback and letting us know about your experience of the platform by the feedback survey available at the bottom right near the resources folder. If you haven't already found and discussed some of the and looked through some of the predisposing activities, you'll find Erin and Adam's story and the ground rules in the supporting resources tab, but they were disseminated prior to the live activity. Now tonight, what we'll do is we'll get feedback from each of our panelists and they'll give a short response to Erin and Adam's story. That'll be followed by a questionnaire session and then we will throw to the audience to give us their ideas about what they'd like to discuss further and we'll get our panel to address some of those issues and we'll sum up. So the money objective for this evening, you know, to really be able to explore and describe the complex relationship between grief and loss, mental health and infertility as well as the risk factors and warning signs of mental illness in persons experiencing grief and loss by way of infertility. Also to describe the challenges, merits and opportunities in the evidence-based practices and approaches in dealing with these kind of patients and to better target referrals to people experiencing grief and loss and mental health issues related to infertility by understanding better the roles of different specialty and different disciplines involved in the care of these kind of patients. So just to briefly discuss the case, Erin and Adam are a couple in their mid to early 40s who have delayed in trying to have a baby for various reasons, you know, their careers and wanting to save up for a house and so on. When they did try, they ran into problems and that led them on the path to IVF treatment and after a number of unsuccessful transfers and unsuccessful, I guess, initiations of pregnancies or pregnancy loss throughout that journey, they're at the point now where Erin and Adam are suffering significantly as a result of repeated bouts of infertility and the complex implications that that has had for the both of them and their lives together. So that's where we kick off and can I invite then Denise to give your response to Erin and Adam's case. Thanks, Erin. Like I said originally, this whole presentation is not one for me, it's been at all for the fertility clinic. Very common to see people in Erin and Adam's situation. So I guess from a fertility perspective, it's undeniable that the coming appearance of many is a major transition in life and a lifelong wish or dream for many. However, the stress of not being able to achieve or fulfill this wish can often result in feelings of anger, depression, anxiety, relationship issues and worthlessness to name a few. And me not being able to attain a pregnancy is actually the stress associated that the research tells us is actually very similar to the distress and anxiety and depression women who are going through cancer treatment experience. So I guess this should now be setting the scene for everybody when people such as Adam and Erin come into the clinic, many patients present the clinic and they come with a lot of life experiences and a lot of life stories. So as healthcare workers, I think it's very important that we need to be sensitive to the daily triggers that are around people trying to become pregnant. Imagine Erin and Adam coming to the clinic and finding is even the clinic nurse or doctor is pregnant. And then going to work after they've been to the clinic trying to conceive a baby only to hear that their colleague has a unwanted pregnancy and is actually trying to terminate their pregnancy. All of these are triggers and reminders to someone who's trying to get pregnant but sadly they are not succeeding. So in some of these instances this might be really unusual and difficult to comprehend but for some women attending a fertility clinic, they actually do try and not fall pregnant. That might sound a bit of a contradiction but just think about it for a moment. By not having sex they actually avoid the expectation perhaps of becoming pregnant remembering that each period of dying is experiencing signified failure which is followed over again by the feeling of grief, anxiety and depression. So it's easier not to set yourself up for these failures if you avoid sex as you know that there is no chance of pregnancy and I think that's really very powerful that we need to actually understand how some of our patients are dealing with these situations. So this next thing is the power of words and how incredibly powerful words can be. Imagine Erin and Adam coming into the clinic and seeing a gift hamper which we often get from patients which is awesome. However for the next patient that comes through that hasn't succeeded, I've seen flowers or thank you cards displayed proudly on the counter and those that are trying to obtain a success are looking at that saying someone else is succeeding, I'm not and are pregnant. So I would like to emphasise the importance of words and I think it's really important as healthcare patients that we choose the words that we use. We set realistic expectations by choosing those words. So imagine just put yourself in Erin's position and think about her hearing a doctor saying when she's coming in for her embryo transfer and the scientist turns around and says you have an absolutely beautiful quality embryo and then the uterus itself is in the most optimum condition. So what do you think that's suggesting to Erin? Of course it's actually suggesting that she's going to have some form of a success. So you can imagine how devastated she actually is when she ends up with a period. And again it's really important that we are setting realistic expectations with our patients. Perhaps saying something along the lines of the embryo has reached stage of development that we would be expecting it to and we are thinking that at this point in time it's exactly where we would think it should be and the uterus has developed to the stage that it should be. Whilst that's saying very similar it's actually telling a completely different story to Erin. And the other thing is when discussing treatment outcomes it's really important to refer to the cycle that's failed or not successful rather than the patient. So apart from the obvious differences between males and females when examining the psychological aspects of infertility men and women do respond very, very differently. In general women show a higher level of distress than their male partners and they want to discuss the situation repeatedly and repeatedly and repeatedly. So much so that sometimes the partners are thinking oh my goodness, didn't we talk about this last night? Why are we doing it again today? It's not much, we're talking about the same thing again but that's the way women cope where men tend to just want to fix it and often they're much more attuned to the financial aspects of fertility treatment. And sometimes that message that's being sent to the partner is that he doesn't care, he just wants to be out in the back with his motorbikes or playing golf and he really doesn't care whereas he's actually sitting there thinking this is what I can do to fix things. We have a plan and now I can move forward whereas all she wants to do is talk about things over and over again so there can be very, very big and significant differences and it's really important to healthcare professionals I think that we acknowledge these differences and we let each other know and let the partner know that these differences do exist. So it's important to keep in mind that even though you see many patients or clients each day everyone is so very different in terms of their unique experience. They are not all the same and they do not blend into one. They are all individuals and need to be treated as such. So going to a counselor or therapist when you're feeling sad or overwhelmed should be as normal as going to the doctor when you have the flu. Let's end the stigma of mental health particularly when it comes to our fertility patients and in particular people like Erin and it adds Erin and Adam who have travelled such a long journey. And my talk is about walking in the shoes of our clients by stepping to my shoes and walk the life I'm living and if you get as far as I am just maybe you will see how really strong I am. So thank you, back to you. Thanks so much Denise and I think you've raised some really excellent points there about what it's like to be a patient in a service and receiving that care and just the importance of certain things that the service itself might not have even thought about. Thank you. Next I'll welcome Jane to share her perspective from a psychologist's point of view. Thank you very much Ebony. I always feel it's important to be asked if you're in this situation of caring for people facing fertility difficulties with some of the evidence we have about how common these problems are and how they've been understood in the available literature that we have. Fertility problems are surprisingly common but it's often used as a rather grab bag basket that includes people in it who have been unable ever to conceive or who've already had a child but can't conceive a second child or who can conceive but can't sustain a pregnancy to term. And in this group of conditions about 15% of Australian couples experience this during reproductive life. What we do have in our country though is access subsidised by Medicare to assisted reproductive technology and we have summary data of how many people are using these and you can see that it's tens of thousands of women who've experienced a treatment cycle of assisted reproductive technology. For many they're seeking fertility treatment as our couple are because they're experiencing the effects of age on fertility which can cause a diminution in both the quality of the gametes and their capacity to unite and form an embryo. And among women who initiated a treatment cycle about one in five experienced a pregnancy and slightly fewer than that experienced a live birth but nevertheless now between 4% and 5% of Australian babies are born after assisted reproductive technology treatment. There's been quite a considerable literature about the psychological consequences of infertility and there are debates in the literature about is it most helpful to think about this as psychiatric symptoms, psychiatric illness or as an intense psychological reaction to a really unusual circumstance. And it's a particularly stressful experience because it can last for many years and it might never be resolved with the desired outcome which is a live baby. What I find helpful is to use the construct of an infertility strain profile that was first offered some decades ago. And in this most people seeking fertility treatments have some of these experiences where they feel very anxious about their fertility and preoccupied by it. They can feel profoundly sad at times. They can be especially sensitive to the experiences of other people as Denise has talked about and they can find it very difficult to socialise because of the concern that they'll encounter people for whom reproductive difficulties seem not to be a problem. Among people who've attended an infertility support group it's found that about one in five are actually so despondent. They contemplate whether life can be lived in a satisfying way without the baby they desire. So in thinking about the psychological consequences of infertility I think we should always remember that it is a profound life crisis and might be the first life crisis that relatively young people have encountered. And that can raise all the existential questions about their own intrinsic worth and what it means for their relationships to other people. But this is where I think the topic of our webinar tonight disenfranchised grief becomes so helpful. And disenfranchised grief is grief where there is a no public recognition of the loss and b no ritual or ceremony to note the loss. And of course there are many unrecognised losses associated with experiencing infertility. Women grieve the loss of the experiences of pregnancy, birth and breastfeeding. They mourn the state of parenthood with all that it means in terms of their social engagement and their social participation. Many mourn the loss of a fundamental element of their adult identity that had always been anticipated. And there's the mourning of the generations around them, the mourning of their own parents who might not experience being a grandparent and the sense of genetic continuity being lost. But none of these are public losses which are easily named and for which there can be some particular forms of recognition or assistance. So we know that once someone initiates treatment, psychological symptoms can in fact increase at the point of diagnosis because it's something that's feared that has been made real. Each treatment cycle is associated with hope and optimism when the embryos transferred and then sadness if menstruation occurs. We know that few couples can persist in one go for more than six cycles although many do come back after they've had a period of recovery. But if there are chronic disappointments with fertility as Adam and Erin have experienced, after about two years they're really at risk of experiencing pretty significant depression that is associated with the chronicity of this problem. So in summary, infertility and assisted conception are always psychologically demanding. We should presume that these are psychologically difficult experiences. They constitute existential challenges. They're especially stressful because they're not easily resolved. Treatment with assisted reproductive technologies is intrusive and very expensive and it counters the normal intimacy that would ideally accompany reproductive life. There are definite experiences of disenfranchised grief and it is intrinsically a lonely and socially isolating experience. Thank you. That's my perspective on this. Thank you so much, Jane. That was really great summary of what the experience is like for patients who are going through this and I guess some of the statistics around it and how much of a problem it is is kind of in the background and not seen. So thank you. Next I'll call on Carolyn to share her response to Erin and Adam from a psychiatrist's perspective. Thanks, Carolyn. Thank you, Ebony. So I suppose many women who go through the experience of IVF and their partners never actually make it to see a psychiatrist although there is a really strong recognition of the psychological dimensions of the struggles that women experience with infertility. I thought that this case study was actually a very strong demonstration of some of the difficulties that the women that I see have encountered and so I wanted to pick up on some of the specific aspects of Erin's response and Adam's response to what has been an overwhelmingly traumatic and ultimately futile experience for them with fertility treatment. And I think a lot of these will resonate with women who've gone through the IVF process. So I think that one of the cardinal features of the experience of IVF is the powerlessness of the woman and her partner who is undergoing the process. It seems in a lot of places it's a highly bureaucratic and very sort of large machine of which the woman herself is a very small cog and so the way things, the specialist appointments whilst menstrual cycles go by, the attempts to understand what the reasons might be that people are unsuccessful in becoming pregnant independently but people spend a lot of time on the net researching any potential risks for themselves or treatments that they could potentially utilise and trying to understand the process for themselves. I think that the waiting time is in particular very frustrating and that's noted by Erin's own response. I think it's also very true that a lot of women get very anxious about incipient milestones like the 40th birthday milestone and particularly once they're in the process of repeated IVF treatment cycles, the loss of hope and losing faith in her own body, in her own body's ability to be normal and to be productive. But in addition to that, there's the financial strain that most couples experience when they're trying to finance IVF, the strain on the relationship where it brings into question what the purpose is of their partnership and that overwhelming sense of failure that a lot of women experience. So I think this is a vignette that really rings true to life. I think the other thing to be aware of is that it's not really just the psychological aspect of the challenges relating to IVF treatment that have an impact on the state of mind of the woman. The biological effects of hormone treatments can be very debilitating as well and I'll pick up on some of the things that Erin experienced. So the physical effects of feeling bloated and sore and bruised from all the injections, feeling fatigue and blood pressure, dizziness and fainting, experiencing over time weight gain which is not really controllable because of all of the extra hormones that are surging through the woman's body. The exhausting fact that IVF treatment and monitoring requires multiple tests and appointments and scans. And so you've got a kind of a coming together of lots of different reasons why women and their partners might feel particularly under pressure and that includes both the psychological effect of infertility added to which you have the psychological, the biological and the psychobiological effects of the hormone treatments which affect the way a woman thinks and feels as well as the way she relates to her own body. This poor woman has gone through a lot of different kinds of sub fertility experiences including repeated miscarriages. And I think this brings into sharp relief the challenges that are associated with pregnancy and developing an emotional connection with a baby whilst still in utero. These days we know that we are pregnant within sometimes days of conceiving and so therefore whereas in times gone by that first trimester might have largely passed without an awareness of pregnancy. These days that's not true and so because it is much more frequent that women will miscarry in the first trimester more women are aware of them miscarrying. And so that emotional connection with a baby which is extremely psychologically important is therefore extremely distressing when it's lost. I think the other thing that I have noticed in working with women who have had repeated experiences of pregnancy loss is that they don't and nor should they let go of the memories of the babies that they have lost. And so sometimes that makes it really difficult to focus on the present much less the future and it becomes a very complex relationship for them their current pregnancy that they're carrying. I also think that the experience of isolation and defeat is very common and this seems to me to escalate Erin's experience beyond sort of the purely psychological response to actually something that I might be interested in trying to talk to her in more detail about the constant low mood and the frequent tearfulness. There's also a passing reference in the vignette to her husband's experience which I think is really worth remembering and focusing on. The experience of the non-biological partner in IVF treatment and in sub fertility is actually something that is easy to lose focus, particularly when a lot of the thinking is about the biological process of the IVF cycles for the woman. I think that other things that are very important in the life of the couple can be lost including the loss of the focus on what their relationship is about and why it's important. Aside from its ability to produce a baby. We know that actually their partners of women who are going through IVF have high rates of depression and anxiety as well and of course their own mental health has an impact on the functioning of the couple as a whole as well. I would say when you're thinking about whether or not to refer to a psychiatrist I think it's really important to think about what marks severe depression out from the experiences of severe grief and loss and sometimes that's very difficult to disentangle. Psychiatrists can provide another perspective and someone outside the IVF cycle to speak to the woman and her partner but sometimes women will experience the addition of a psychiatrist's perspective as just another burden or appointment or source of stigma and judgment and that's important to think about evaluating options for each individual couple. I think obviously if you're considering medication it's useful to talk to a psychiatrist about what might be helpful and the guidelines for treating women with sub fertility are probably quite similar to the guidelines that we would use in managing any kind of mental health problem in pregnancy and breastfeeding. So I'm sorry I've talked for much too long I'm happy to answer questions if they arise later on in this discussion. Thank you so much Carolyn it's really interesting to see from a psychiatry point of view the bio-psychosocial aspect of the different elements and the complexity I guess with any presentation like this it's not just a woman but it's her whole context and considering her that context I guess is the crux of what we're all doing to provide care to these individuals so I wanted to open to the panel then and I don't mind who answers but I really wanted a little bit of the real nuts and bolts around what kind of therapy has an evidence base and what kind of treatment has an evidence base for this kind of disenfranchised grief and particularly women affected by infertility and men so what strategies are you using what works, what doesn't work and how can that be applied by our everyday practitioners? I'd be pleased to come in there. Go ahead. Is it James? Yes. Go ahead James. Thank you. Look there have been surprisingly few formal investigations of what approaches work and the ones that have been best evaluated are group-based psychoeducational approaches that combine support with helping people to learn some problem solving strategies but a lot about self-regulation of emotion so learning some relaxation techniques learning how to enable yourself to think with clarity about life in a broad way of which fertility is part of it but I think none of these have been shown to be a perfect solution and not all clinical services offer these kinds of groups so it is worth holding in mind that what is helpful is to take a problem-solving approach that promotes optimism and hope and encourages people to think about the other things in life that they might be able to look forward to and discourage them from withdrawing from those things and only focusing on the fertility and the fertility treatment. Great. Thank you, James. Carolyn. Hi. Absolutely, please. I'd love to explain something. I'm not sure whether it's a conveni or not. We can. Yeah, awesome. So yeah, absolutely. I agree with what you're saying there, James. I think a lot of it is about I always talk about having a cautious optimism because I think we need as healthcare providers to provide them and again, it's all about the language we use and it's about providing them with realistic expectations and I'd like to think that people that are working with our couples going through fertility issues or our individuals going through fertility issues are trying to encourage them to fit their fertility around their life rather than their life around their fertility because otherwise it can absolutely become all consuming and we often see people referring to this rollercoaster and sometimes people just don't know when to get off that rollercoaster and will continue treatment after treatment and it really is up to us as healthcare professionals to start setting some boundaries and having some fairly realistic expectations set with them and talking with them about when enough is enough. Absolutely. Thank you, Jenny. Did you have a comment, Carolyn? So, I mean, I agree with what both Denise and Jane have said in regard to structured therapies. There's some good evidence for CBT-based approaches and some mindfulness-based approaches. There's some links that have been drawn in the literature between actually being stressed and experiencing clinically significant anxiety and depressive syndromes and reduced fertility which is never helpful to say to the woman in front of you when she's stressed but it's good to keep in mind as their practitioner so that if you are able to implement any kind of structured psychological treatments which include relaxation therapies that might in fact improve their chances of a good outcome in their fertility treatment. Absolutely. Thank you. I'll stay with you, Carolyn and I just wanted to explore, I guess... You touched on it briefly in your presentation but what would be the tipping point that say a patient had come into the general practice and was sort of showing some of the signs of suffering, grief and loss and mental health impacts from infertility but there was sort of that, you know, those fine lines between is that normal? Is that a normal reaction to a life crisis or is this going to the next level and do I need to take it further? Can you comment on that? Absolutely. It's always an individual decision for the GP and her patient. I think for me it's about the functioning of the woman so if her difficulties in accessing treatment and coping with treatment are actually impeding her ability to live her life so to eat, to sleep to have a normal sex life with a partner to function at work to do all the normal things that would constitute her daily life then that's an indication for treatment and not necessarily psychiatric treatment like medication in the first instance but certainly some kind of quite targeted and structured treatment which may involve just finding a supportive counsellor that she can feel comfortable speaking with but if it gets to the point where someone is profoundly low in mood persistently so where they start to lose weight where they start to have real trouble sleeping in particular staying asleep and have this persistent early morning waking then that's all sort of biological markers of quite severe depression and that's probably when you would think about trying an antidepressant treatment by experience a lot of these women are very hesitant to take any medication that could have any impact on their fertility or their ability to carry a pregnancy to term and so actually even the decision to start taking a medication is fraught with a lot of anxiety so I think it's really important to keep in mind the psychological support of these women and their families it's very important to try and give them as much evidence to support their choice as possible but unfortunately we do need to improve the quality of our evidence so I think that it's a really important thing to provide overall support and that includes psychological support ensuring that people feel that they have someone to turn to when they're really in extreme distress and cautiously trying medication where appropriate Thank you Denise I wonder if you might comment a little bit from your experience you know you've been involved in fertility clinics for a long time now and one of the things you did identify is that patients actually sometimes get lost they're not connected with their GP that the care sits within the fertility clinic so what's your experience of holding these patients in your clinics and how would you escalate their care if you felt that that was needed? That's a great question and thank you for asking because I'm hoping that there are people in our clinics here and maybe they would take some of this on board because I just recently did a bit of a research project on people that were attending our clinic and it became evident to me that 40% of people that we were seeing had actually previously had a mental health issue and part of our clinic's I guess, policy is that if we've identified all the patients with us or with clients with us and told us that they'd previously had a mental health issue that needed some form of treatment that we escalate that and prior to then actually starting any form of fertility treatment we've put them in touch with our psychologist or our councillor and the issue around this is that if a patient's thought of clients if you're allowing or encouraging to make contact initially they won't because they again see themselves as failing because they don't believe that they're coping well and it's just another I guess another slant against them they feel I'm not doing this I can't even do this right I can't even go through fertility treatment without needing some form of support so I think sometimes expecting them or wanting them to seek assistance on their own whilst that would be wonderful that's often not going to happen I think we really need to take the lead here and at the very least put them in touch with the psychologist or councillor and at that point in time just having that initial contact can be opening up that opportunity for them to talk to the councillor or the psychologist and if it's framed in such a way just about them needing support then often they're very open to that Yeah thank you that's some really great points there Jane I just wanted to ask you a little bit more detail about I guess the psychological impacts of a woman who has experience in fertility and then goes on to have a subsequent pregnancy and the impact on that pregnancy and then her relationship with the child or children subsequently and you know children previously can you comment on that? I'd be pleased to Urbanie thank you what we do know is that after conceiving with RDS the pregnancy itself can be characterised by a lot of anxiety because as we've heard already from Denise and Carolyn women have experienced many losses up to that point some of them have been an anticipated pregnancy and some have been a pregnancy that's led to miscarriage so often the pregnancy itself is characterised by lots of anxiety and great concern that it might not continue to turn and I think women find reassuring care very helpful but what we do know is that after the birth of the baby when breastfeeding can take a little bit of time to get established that is a time of particular vulnerability to intense anxiety because they of course have a deep desire to nourish the baby and they're very frightened that if the baby is not given food for the first 48 or even longer hours and is put to the breast and no milk is being produced this can be intensely distressing and although we know that women have conceived with IVF all intend to breastfeed in fact they cease breastfeeding at much higher rates than women who have not conceived with IVF and the other difficulty they have is in tolerating the baby's crying because as we've heard already this anticipated baby has grown in their imagination for a long time and I think to experience the baby trying to feel uncertain about how to soothe and settle the baby they can often be very critical of their own parenting efforts and not really accept that all of us need to learn how to do this and if you've experienced a birth after a long period of anticipation it doesn't magically make caring for a baby easier so these are both times when I think very active structured assistance both with breastfeeding and then later with how to soothe and settle a dysregulated baby are very important areas of assistance for women who have conceived with IVF Thank you Did anyone else from the panel have a comment that they wanted to jump in with there? Yeah I did thank you and thanks Jane for raising some of the really important issues and we had touched on this a little bit but I think we've focused a lot on Erin but there's also Adam and I think it's really important to understand that often the guys don't do so well and they're less likely to go out and seek some form of assistance or support so as healthcare providers we really should also be focusing on the male and making sure that they also are supportive and letting them know what is normal particularly with their partners sometimes they'll look at their partners and think oh my goodness I don't know this lady anymore but in fact what she's experiencing more often than not is very normal and it's about normalising it for him so he's accepting and perhaps exactly what you've said before Jane about being more tolerant of the situation and vice versa so that she is also more tolerant if she understands how he's coping with it and there is normal but it's also important to understand outside of what we would expect to normal I wonder if I could just add a quick point there that it's actually known that the person that men most want to speak to is their partner as you've said Denise but it's also the IVF treating clinicians and men tend not to speak to their own parents to their friends and to other sources of support about this particular matter so for the IVF doctors and nurses to be very attuned I think to the needs of men as you've pointed out is crucial, thank you Thank you Jane, thank you Denise I mean I completely agree with you and it's interesting where I work I work in Indigenous communities up in the Cape and I see there is a large cultural difference in my Indigenous patients and the way that they process the men particularly process infertility and the grief and loss around that it's very important to them and it's something that is expressed and not so much in my non-Indigenous patients so some cultural factors are interesting there but definitely the men Adam's side of the story is often lost and we could be doing better with that so I'll move on now to opening the poll please Redback I want to hear from our audience tonight we've got a couple of options there about what you'd like to spend the remainder of our question and answer time discussing so your options are anxiety after several pregnancy losses normal versus abnormal grief for people with infertility efficacy of medication in responding to grief and or depression for infertility and the overlap between grief and depression for infertile couples so I'll give you a few moments there just to click on what you would like to discuss and we will get Redback to give us the results let's give you a couple more seconds there anyone else wanting to respond there I'll give you about two more seconds so it looks like we've got a winner there in talking more about normal versus abnormal grief for people with infertility so who of our panelists wants to feel that aspect first can I throw it to you Carolyn okay sure I was thinking maybe Jane but I'm very happy to give it a go and now I might ask for Jane's perspective after I've had a chance to talk about it so unfortunately it's very hard to define what normality is in terms of grief there's no normal template for grief in whatever context it's experienced whether after the loss of a parent or a partner or in this case after the loss of a pregnancy and I think that although I think it's really useful to have we've all heard about Kubla loss of stages of grief and acceptance I have very few patients who follow that particular cycle in the way that it's described and I think that one of the things which is most frustrating about the experience of grief is that it's so unpredictable and uncontrollable so grief can go on for years it can settle down and then recur with the presentation of a new stressor and in some situations I think it can take on some aspects of trauma experience where people are reminded of their grief and they're lost simply by for example walking past a pregnant woman in a supermarket or going into a women's hospital which is largely set up for the purposes of reproduction but in fact also provides care to women experiencing cancer and fertility issues so I think that the demarcation point for me again is all about all about impeding people's ability to function if someone is so debilitated by their grief experience that it's impossible for them to continue to live their normal life then that's an indication that it is outside the realms of what they can cope with and that's where they need to ask for additional help what would you say about that James? Well look I think you've put it really well and there might just be a couple of things I would say on top of that I do think introducing people to the understanding that grief is not a single emotion as Carolyn has talked about is very helpful so to know that anger is part of grief envy and jealousy is part of grief despondency is part of grief but so is it part of grief to feel quite neutral at time and it can be helpful to people not to get panicked about that emotional variability but the construct of disenfranchised grief I think is quite a foreign one to people who are not necessarily working in the health field so to really help people understand that no one's bringing a special meal because you've had this loss there's no external recognition makes it really significantly harder so there are two things that I encourage people to do I encourage them to really try and think about who I should tell and when I should tell and how I should tell what is happening to me because reducing the social isolation is part of assisting with this and often they're uncertain what words to use and how to explain it and this can be especially problematic if one partner has the fertility problem and the other one doesn't and there can be this same of not wanting to embarrass the partner for whom this problem can be attributed the other thing is I think it's helpful to people to have private ritual if they've experienced a pregnancy loss and as we know miscarriages don't attract the baby as they're registered there's no funeral for a miscarriage but it is helpful to talk to people about whether or not they want to name the baby that they had anticipated having and some people do and some people don't and whether they want to do something that symbolises or commemorates that baby and people often come up with very imaginative things that they'd like to do as a personal way of memorialising that loss and what it's meant to them lots of people want to plant beautiful plants or to create a place within their home where that baby is commemorated and remembered some people want to do something for public good they want to donate something in the memory of the baby but those can be I think helpful in addition to the things that Carolyn has talked about absolutely some really good practical suggestions there Jane, thank you did you have anything to add there Denise? well no I think both of you said how significant grief can be and everybody goes through various stages and various emotions when it comes to grief what's interesting is that at the clinic I have occasionally heard people say things like oh this is they've already been through treatment before so they must understand what's going through and yes they've had a miscarriage and that's terribly that's really bad for them but they've gone through the process and they've actually achieved the pregnancy and I'm thinking well that's awesome for us because health care professionals that's not what they want to hear they don't want to hear when you've done it before so you can do it again because as you said before Jane often they are very nervous and anxious about coming back for treatment but it's actually supporting them and saying to them that they're acknowledging the fact that they have grief and certainly having exactly as you said before about having private ceremonies we often encourage them to maybe go where we're in the Sunshine Coast so go down to the beach and perhaps have a little private ceremony with your partner maybe it's their family maybe they just want to just acknowledge it themselves and go out for dinner but it's acknowledging the fact that that baby did exist and it was real and I think that's very important because as you said until the baby reaches 22 weeks of pregnancy it's not registered so it's not considered to be a vile pregnancy but it's really important that people acknowledge that pregnancy actually existed and I think you touched on a bit earlier Jane about telling people on who you tell well first off to say much about the risk carriage I often hear people say when they're starting their treatment they're so excited about starting their particular treatment because they feel that we're going to get pregnant first time and sadly the research shows that people have to have up to six embryo transfers before they may actually achieve a pregnancy so they're so excited that they tell everybody that we're listening to them the fact that they're starting treatment and the number of times that I've heard I wish I hadn't told everybody because all now I hear have you had an outcome yet you know what pregnancy outcome is have you had your e-collection yet what's your scan showing and people have come out of the world and the other people out there that they feel it's just too much for them and often second time around that they're a little bit more composed and who they share the information with because they feel that constant questioning is perhaps a little bit more negative for them than it actually is in the positive life absolutely thank you thank you Denise I just want to pick up on the second topic that our audience was really keen to explore some more and that was really around anxiety after several pregnancy losses but I think more broadly anxiety is a feature of many pregnancies whether or not infertility is a factor and it obviously escalates for many patients after several losses or even just after one I wonder if we could talk as a panel about I guess some of the practical strategies and things that we might do to bring anxiety I was talking to somebody I was talking to somebody recently and we were discussing exactly that and how we could manage that and some of the things that we perhaps don't give a lot of credibility to is simple things like providing people with a hug and actually giving them that hug or people before Karen we talked about people having difficulty with sleeping actually wrapping them up in a blanket and providing that security and that will tend to help lessen their anxiety and provide them with just a bit of reassurance and it doesn't have to be going out and doing expensive treatments or anything like that it can actually be something simple that we can provide in our home environment I think you've captured some really important things there Denise Carolyn also referred to them earlier that we know that things that assist with self soothing so mindfulness or meditative practices are very helpful relaxation is helpful it can be helpful to educate yourself about cognitive behavioural principles but when you can't change your experience the only thing you can change is your thoughts about that experience and there are some very good online packages that can help with managing those anxious thoughts during pregnancy and if people are not wanting to go and seek someone else to talk to it can be useful to refer them to those the online resources that can be available to assist with that I would strongly agree with Jane's suggestion there are so many available now they're just proliferated but even the most primitive of the meditation apps are very very valuable in allowing people to bring their thoughts back to the centre of their being and bring it back to the moment in which they're existing and I think because there's so much that is uncontrollable and completely unanticipatable about the process of insecurity treatment it's very helpful to then utilise those mindfulness-based techniques which is strongly based on very ancient meditation practices so I actually find just listening to and I find this for my own sake and also I share it with my patients that even just the sound of listening to rain drops which you can find on really any on Spotify actually lots of sounds of rain repetitive noises that are calming related are sometimes really helpful in allowing people to come back to the very basic things about being alive and being human because of course there are all of these things about IVF which are quite impersonalised and quite dehumanising sometimes and so the experience of being within your body is really important to come back to especially when your body feels so bruised and battered by the process of the physical experience of hormone treatment I think it's really useful to allow those thoughts to come into your head and acknowledging those thoughts particularly if they're anxious thoughts or they may be negative thoughts but then acknowledging for what they are and then letting them go saying that this part of me that I'm letting it go on releasing those negative thoughts and concentrating it back perhaps tomorrow I'm going into mindfulness about what you have that you have an awesome relationship or that you may not have achieved a pregnancy yet but you've got an amazing partner who's supported of you or you've got some amazing friends who are very supportive of you but just giving short acknowledgement to the negative thoughts that are coming in but then letting them go on Definitely and I imagine a lot of those strategies would be useful for patients I mean you touched on it Carolyn but a lot of my patients and I'm sure this is a wide-ranging experience their infertility journey has compromised their physical health potentially and sometimes quite dramatically and that sense of failure that their body has failed them that they are not a worthwhile human being because they're unable to produce life as a woman so those kind of really core existential crises that you talked about before Jane around their role in society and their role in their relationship and their relationship with their body more broadly Do you have any comments about any other things that you would do for patients experiencing those kind of complications through this process? I think you raise a really important one and we know there are huge benefits of being physically well so engaging in simple exercise nourishing food all of those things are really good for you when you're pregnant, when you're anxious or when you're experiencing a combination of those experiences I think women also have mixed feelings about to what extent they want to associate with other women who are pregnant some really want to identify with that and join that experience what's called a more tentative pregnancy where they actually have disbelief they don't want to prepare a nursery they don't want to buy any baby clothes they really are very uncertain about that and I think it can be useful to be able to have a bit of a conversation about what does that mean what does it mean if you're beginning to plan to prepare for the baby's birth but you're very uncertain whether that is to happen for you but generally once women begin preparing for a real baby to come into their real household they often find that actually a good experience they tend to do it much later in pregnancy than women have conceived spontaneously yeah very good point, thank you Jane look I'm going to stop our discussion there we are coming to the end of things and I wanted to invite each of our panellists two minutes just to sum up their thoughts about the discussion today and their responses to Erin and Adam I'll start with you Denise first thank you well I guess what I'd like to say as I said at the beginning the picture that was presented with Erin and Adam was very very common the language that we use is healthcare professions when caring for these people need to be well thought out and the research has shown in 2006 actually did some research because a lot of people thought that women were leaving it later to have babies purely because they wanted to buy their Mercedes Benz or they wanted to travel around the world or they wanted to become a professor of their job but in fact the reality was that they couldn't find the person that they really wanted to have children with so how we view these people too now the way we actually see them can really influence particularly other people that we're working with if we give the patient's labels too or the client's labels and I know that you're probably getting individually with people that entertain that I'm dealing with it's really important to be aware that how you perceive somebody can very easily influence how others perceive them without actually giving that personal opportunity of presenting as themselves yeah thank you, thank you Denise I'll move on to Jane I really like the points Denise has made about the language we use and the behaviours we adopt as health professionals I think infertility touches everyone so you can't be untouched by yourself if you're in the presence of someone experiencing this sadness and it can be really important as a professional to be very conscious of your own boundaries but if you've managed either to conceive and have children yourself this is not the time to be disclosing that but also it can be difficult for you if you've experienced infertility to be in the presence of someone having this experience so it's an infectious experience of anxiety and sadness I think it's always important though to provide the optimism that Denise talked to us about which is that whether people have children or not although that long term most people manage to construct a meaningful and gratifying life and that there are many ways of experiencing a parent-like relationship with children and that part of our job is to enable people to begin to explore those alternatives if it seems that they're not going to be able to conceive and have the biological child they desire thank you some great messages there Jane thank you and last but not least Carolyn yes I would echo what Jane has to say about sometimes when people are faced with a dead end of their attempts to have a child biologically they are able to think more broadly about what it means that their life is going to take a path that was unanticipated and I think that's particularly difficult for a lot of people who are used to being in control in their lives and have achieved lots of other milestones but in fact there are lots of ways to be nourishing and generative in your society and your culture that don't necessarily include having a biological child and so I think sometimes it's useful to move the conversation when people are ready towards that discussion I also think in our society we've sort of forgotten about a lot of the structures that used to exist that bound people together and allowed them to interact not necessarily just through their jobs but also through their interests and their involvement in the community more broadly and I think that also provides an opportunity for people to give back and to feel that they are well and that they're valuable and provide a useful contribution so I've actually had a few patients who've been able to go through that process which is not in any way to diminish the profound sadness that a lot of people experience but the end of the road with facility treatment is not the end of the road is what I would say for those people who are suffering at that moment in their lives Thank you so much Denise and Jane and Carolyn for your excellent responses to Erin and Adam's case and then really in-depth and thoughtful discussion around the very complicated issues and contacts that we see patients suffering grief and loss around infertility I mean I think tonight we've touched on a number of things strong messages coming through really from you Denise is around the power of the words that we use and the subtle things in terms of putting ourselves in our patients shoes and having that empathy at each stage from before you walk in the clinic to the end and just being mindful of the impact of all of those tiny little things in our patients journeys and Jane you gave us a really good overview of the state of assisted reproduction technology that's being used around Australia and then the various psychological impacts of that and certainly some great evidence-based strategies to manage some of these complex patients and their relationships so thank you and Carolyn really delving more broadly and deeply into the differentiation between what we would consider normal grief reaction and one that needs perhaps specialist care and how to facilitate that discussion and get that person engaged in that deeper level of care that they might need throughout this journey and sort of I get a sense from you that understanding the person in their contacts and wrapping around them and from all of you in terms of providing hope to that individual and supporting them along their journey and not just them but their couple and them as a couple and as a community and that's that's the real joy and satisfaction in this work for me certainly and I know for our audience and for our panellists tonight so you know it's very rewarding work and there is hope and conveying that sense of hope and purpose and supporting people through what is a very difficult time I hope that our audience gains and our panel gains knowledge and skills and strategies that you can then take forth and share with your patients so thank you thank you all this was the final activity in the grief and lost dream for the MHBN inaugural online conference working together together visit www.mhbnconference.org.au to see other activities that you may have missed it's been a great conference and thank you so much for participating Redback thank you so much for supporting us in the conference and providing the webinar platform don't forget to our participants the supporting documents are available in the resources tab at the bottom right hand side of your screen you will receive a certificate of attendance within four weeks from tonight so look out for that and we encourage all our participants to of course give us feedback and fill out the feedback survey after the session thank you so much and good night