 I have the honor to present a fellow midwife today to give us a presentation entitled the psychological well-being following miscarriage from a cell-to-genic perspective. We have with us as our co-presenter Anne-Marie Rennie who's a midwife out of the UK currently in Scotland. She's been a midwife since the 80s and holding a variety of teaching positions, practice positions. She taught at Robert Gordon University in Aberdeen and was awarded a PhD completing this in 2016. She's currently the project lead for recognition of prior learning at the NHS Education in Scotland and we will be with her and hope that you have lots of questions about this as we move forward. Anne-Marie, over to you. Okay thank you very very much Pandora for that introduction. As has been highlighted this study was my PhD and I started in 2010 and finished in 2016. I was teaching midwifery at the same time but really you know obviously it was a topic that's very interesting for us as midwives and I was delighted to have been honoured to receive a PhD studentship from RGU. And what we know as midwives actually is miscarriage is common. It's a unique experience for each individual. The UK definition of miscarriage is when a pregnancy spontaneously ends before the 24th week of pregnancy with the frequency increasing with rising maternal age. But there are lots of different definitions of miscarriage and what's really interesting is that this is a global conference so I would really be interested to know what your local definition of miscarriage is. Most occur in the first trimester so within the first 12 weeks. Most miscarriages cannot be prevented and there's between 15 and 20% of clinically confirmed pregnancies that spontaneously end before the 13th week. Although this could actually statistically be higher because this doesn't include women that didn't know they were pregnant or didn't report their pregnancy. So though you know it could essentially be higher than that. So what are the definitions globally? I'd be really interested to hear what your definition is. For example I know the WHO definition is up till the end of the 23rd week but also weighing less than 500 grams. I believe in Australia it's up to 20 weeks gestation and you know so it's interesting when you've got different definitions for something that you want to examine and explore and you're looking at different research studies when the definition is not always the same it makes that more complex when you try to compare study findings. So I would be interested to know obviously here we've got South Africa at 24 weeks but also 26 weeks so miscarriage could be anything up until the end of 26 weeks. Well that's you know again you know a larger gestational age and what we do know is that as midwives when women are telling us about their experience of miscarriage that it impacts on their psychological well-being. Some will obviously be devastated, shocked and confused especially when there were no signs that anything was going wrong and they go along for their 12-week gestation scan to be told that there's no fatal heart and you know the differences between responses could be any of these factors here sad and tearful, numb, angry, jealous, self-blame and guilt where they feel empty, a physical sense of loss or lonely especially if people around them don't understand and maybe a little bit panicky and out of control not able to cope with everyday life. So there is you know a response that varies and it's an individual response so you know I think what's important here is that with that individual response we need to respond individually and I'm sure you know as midwives when you've when you're hearing somebody recall in their next pregnancy about previous miscarriages that they often do get upset and being able to talk about it potentially might be helpful. So in the UK we have nice guidelines which suggests the offer of follow-up with a healthcare professional of the woman's choice. So what that follow-up looks like differs across the UK and typically these are going to be women that are reaching out for some type of support and so typically the midwife will contact the woman and visit to support her but I'd also be interested to know what happens elsewhere around is support offered in your area and how do we how do midwives identify those in need of support and is asking them whilst they've just found out that they've had a miscarriage and then had any treatments and is it is that the right time to ask them? Are they able to make sense of everything that's gone on and make a decision at that stage as to whether they will need support or not and certainly you know some low resource country settings there are issues around lack of midwives providing care during birth so it might be that you know it's not possible either and I can see in South Africa that there's no professional support whereas when you've got a case loading model and that's really interesting you get to the women get to know you and you get to know them but some women don't want any but they just want to keep the contact open but there are issues around that offer of follow-up support in the UK so this study why is it why is miscarriage why is it important that we find out more about miscarriage? Well I think certainly raising awareness about women's psychological reaction is important and it's certainly during education of student midwives and midwives what were your experiences of learning about miscarriage I when I trained back in 19 when I qualified in 84 we really didn't get much information about it at all so but the important thing is if it matters to women then miscarriage should matter to midwives because midwife is with women it's not necessarily with women with a baby you know a successful pregnancy whatever you know it's about us being with women and listening to what they're saying and being supportive and understanding that in the next pregnancy there's going to be some women that are extremely anxious so also you know any opportunities we have to spend time with women in that relationship building you know that is sometimes triggered during an event such as a miscarriage so we're current miscarriage this is in the UK the definition is three or more miscarriages in a row and recent literature suggests that actually two in a row is recurrent and I'd be interested to know what your definition for recurrent miscarriage is but typically in the UK if you have three miscarriages in a row then you can see a professional who will do further tests to look for any underlying cause and no cause is found in about half of those cases but what we must remember is that many women go on to have a successful pregnancy and much of the research focuses on trying to find a cause or treatment to stop miscarriages happening indeed a study well when they looked at top 10 research uncertainties for miscarriage a lot of the questions out there around miscarriage were looking at the cause of miscarriage which you know sort of teases out this fact that you know is there anything that could be happening that could be causing the miscarriage but you can see that what types of emotional support and mental health impacts of miscarriage in the short and long term for the mother and the partner are important also what types of emotional support are effective in preventing or treating women or their partners after a miscarriage and what preconception tests or interventions prevent miscarriage e.g. vitamin supplements for the acid and mindfulness and i'll come back to mindfulness so you can see there's also other factors there around you know is there anything like for example the male factors that might contribute towards a cause what the appropriate investigations for women after one two or three or more miscarriages any genetic or chromosomal abnormalities that might be causing miscarriage what about lifestyle factors what about pre-existing medical conditions what investigations are of true clinical value and what are the effective interventions to prevent miscarriage threaten miscarriage and reoccurrent miscarriage so they're the top 10 research uncertainties and you can see a lot are focusing on cause and prevention so my study used a salutogenic approach which was a originated from professor Aaron Antonovsky so instead of looking at factors that cause ill health um it you you look at factors that support health and well-being and it originates from the latin salis which is health and the greek genesis which is origin and under this umbrella umbrella of assets for health and well-being there are all these um types of psychological assessments that uh you know go under this salutogenic umbrella so you can see um self-efficacy empathy attachment coping uh locus of control um hardiness gratitude learned hopefulness quality of life flourishing um etc so you can you can um see that there's lots of different uh constructs there that might explain help to explain um what helps uh what enhances psychological well-being so in my study i used um the hats hospital anxiety and depression scale um i also used that alongside a well-being scale which was the warwick ember a mental well-being scale and some proposed moderator variables i included health locus of control um perceived social support coping styles self-blame and resilience and some of these um had been used before in the miscarriage population for example the hats hospital anxiety scale um had uh had been used before whereas the well-being scale hadn't been used in a miscarriage sample that i could find in the literature anyway but um i used mixed methods and i started off in phase one doing a quantitative study to determine the impact on psychological well-being and to try and identify some protective factors um so first of all i had a comparative sample a comparative study and this had women with miscarriage compared to women without miscarriage and the comparative sample without miscarriage were women who were of reproductive age um but that had never had miscarriage and were not pregnant and the comparative study um helped us i you know compare uh across you know women with miscarriage and versus women without miscarriage stage two was a prospective study so this was the miscarriage women but i examined their changes over time on the psychological impact and identified predictors of enhanced uh well-being at the different time points so we recruited women um for the miscarriage study in a early pregnancy assessment unit and this includes women who obviously completed the baseline questionnaire shortly after miscarriage to look at the initial impact and then uh we went back and asked the same women at six months which potentially for some have been around the time of their due date had their pregnancy not ended in miscarriage and then we went again and asked them at 13 months to avoid the anniversary effect um and phase two was a qualitative study so from uh our sample of miscarriage women we then explored the predictors of enhanced psychological well-being so we did some analysis on the quantitative studies identified the predictors and then um developed an interview topic guide informed by the quantitative findings to explore those factors that helped women adjust obviously we had to go for full NHS ethics review um this was approved but it was approved sequentially so the quantitative study was um sought initially because we knew what we wanted to ask um and then we went back and got a substantial amendment to help them reevaluate based on the questions we wanted to ask in the interview topic guide and obviously the study um was voluntary women were able and knew they were able to withdraw at any stage uh and we received informed consent they knew they were going to be followed up over time the comparative sample who were of reproductive age um and these were recruited from a well-being a women's um well-being clinic and we got our respective sample as I said from the early pregnancy miscarriage unit obviously it's a vulnerable you're asking vulnerable women to you know share their experiences and we wanted to make sure that we were mindful of the fact that if they were exceptionally anxious or depressed scoring um 11 or more on the hospital anxiety and depression scale that the GP was notified and women knew that that if we were concerned about them that we would share that um uh anxiety that you know that we would share that uh maybe if they were anxious we would share that with their GP so the results from the quantitative study showed that a significant proportion of women following miscarriage experience elevated levels of anxiety and depression and have lower well being than women without miscarriage so that was the main um comparative study the overtime the perspective study over time at the three time points showed that well-being increases and depression appears to lessen but anxiety remains elevated so there's a group of women who are anxious um after miscarriage and those that is statistically um proven in this the protective factors were so women who weren't anxious had a higher internal health locus of control had higher social support from significant other and family had a higher task and a lower avoidant focus coping style and didn't self-blame the other protective factor was higher resilience so from that we then did some um logistic regression and found that the most strongly related to the well-being scale was resilience and to anxiety and depression was self-blame and avoidant coping style and that sort of fits nicely with a lot of the psychological theories around um self-blame being quite uh a feature whereby you know it sort of um becomes almost like it sort of doesn't help reduce you know when you're blaming yourself for the miscarriage when we know actually there's no reason to do that um we don't know what causes miscarriage and uh why would you blame yourself as you know we know that um it's with some careful uh discussions we can try to unpick some of that and an avoidant coping style when you you can't you don't want to think about it you don't want to talk about it um that was a key feature to um the anxiety and depression so the qualitative study really was uh able enabled us to to look at how important compassion at care is for women who experience miscarriage and here's a nice quote she took ages this is obviously the woman having her scan and she was just very gentle and just saying I'm sorry but it's not good news and then she said do you want to see the screen and she showed me on the screen and then we went through to the other room and she came through and sort of sat beside me and she was just nice just a lovely lady and you can see how important that sensitivity and compassionate care is so making sense a lot of women spoke about you know if you think about everything that's got to happen in the body to make a baby of course things go wrong um but if you've got that avoidant focus coping style maybe you can't share how you're feeling um you you're not able to talk about it but women that are able to talk about miscarriage find actually when they're talking about it this woman says 12 people sat round a table and out of the 12 of you finding about eight had had a miscarriage if not more it helped her realize okay miscarriage is common but how many women know miscarriage is common it's a taboo subject we you know the the impact of a significant other you know I there's some lovely quotes here I think he found it difficult at first because he didn't want to be upset himself because he didn't want to upset me but then we do talk we've talked through a lot of stuff so we did in the end just talk it through and here's another one but we vowed we'd stick together and we would get there in the end I would definitely say that it's made myself and her significant other stronger as a couple and here's another a quote from you know what what one of the significant others said just telling me that be okay and we would get a baby and not to blame myself so you can see the impact on the significant other and wider social support network is is a factor but how how they work that through and make sense of it and you know some of the conversations that help you know is is demonstrated in this slide other helpful flat factors one woman spoke about how she blew up some balloons and wrote stuff on them and just let them out the back like it was kind of my way of like saying I know you should have been here but you're not also taking part in the research the research questions she says I don't know they really made me think about what I've gone through and I think that helped I would say that's probably been one of the key things it was nice because I thought somebody's actually interested in me so taking part in the research was was helpful for some what doesn't help and I think you know going back to that follow-up I think I was more surprised more than anything that there wasn't any follow-up so having that question asked at a time when you you're still trying to get your head around what's actually happened it's difficult to make that decision as to whether you want follow-up support or not at that time so and obviously this woman can't even remember being asked because she doesn't recall any follow-up being offered so also having sensitive locality for care not next to women with babies is really important and I know the unit that helped with the recruitment of the study they identified a back door that enabled people to leave the maternity hospital in a sensitive way where they didn't have to walk through a busy antenatal clinic with lots of pregnant women so they were very quick to respond and they also have a memorial garden and you can see here I still think there should be like I don't know a memorial thing or something and after this research a memorial garden was set up so you know there can be a place where people can go and acknowledge their loss over time I mean I was going back to women roughly 14-15 months after their miscarriage and quite a few of them got upset when they were sharing their experiences this woman said I went to the toilet and there was blood and it was horrible oh I'm sorry I'm going to cry and she's apologizing for actually you know probably something that she maybe would have benefited to have shared you know an earlier stage but you know do we really know about the long-term impact of miscarriages and I'd be interested to know what your experiences are around around this topic so over time this study did show some women were anxious so the implications well obviously miscarriage is important to women and their partners and their families it's an individual response for women that requires an individual response by midwives or healthcare or other healthcare support workers but communicating sensitively and spending time with women allowing them to share how their feeling is always going to be beneficial so supportive loving relationships in terms of you know being supported by a significant other someone to talk to who understands and listens realizing that miscarriage is common helps you also to realize that well if they're all having miscarriages then I'm not blaming myself you know it's not something I've done having a plan and an internal health locus of control so having some sort of plan for the future and also looking internally at you know is anything I can do to optimize my health and well-being and that compassionate care that is supported within an individual individualized approach miscarriage matters it's common one in four at least there's often no underlying cause many women are just well many go on to have a baby and this study shows us that anxiety is an issue for some women and they're going to be the women that come back in the next pregnancy those that are not anxious do not self-blame or resilient feel able to express their emotions and talk about their experiences of miscarriage they have a plan and they're supported by their significant other and family and I think in the future further research is needed which is conducted adequately powered randomized control trials for the effectiveness of psychological follow-up for women following miscarriage and it's recommended that standardized psychological assessments are used to compare across studies but that we should be identifying those in need of follow-up because if we include all women in a randomized control trial then the diluting effect of having women that are not anxious in a sample that would maybe be testing on things like mindfulness or cognitive behavioral therapy or follow-up support tailored to share enable women to share their feelings that impact the effect might well be diluted we've also got to consider obviously cultural contexts and in some countries the role of extended families might be important to consider so looking across cultures would be beneficial the miscarriage association in the UK is a great contact for information and support but many women feel not able to pick the phone up it's difficult for them to pick the phone up they have got a simply say campaign which is about telling the public about what they should be saying if they've experienced miscarriage and what they shouldn't be saying so there's a hashtag say or hashtag don't say and this enables women to say this is what you should be saying or this is what you shouldn't be saying but they do provide a really good amount of information and support for women who experience miscarriage but a lot of women might find that difficult particularly if they've got an avoidant focus coping style I am sharing this in case anybody out there is feeling that they want to share their feelings they might not have experienced miscarriage per se but you know the Samaritans are a UK support resource for people who feel you know very very distressed and I know this is a distressing topic so I just wanted to make sure that people know that you know if they felt that they wanted to write an email help them through a difficult time then there is either a phone call or joe at samaritans.org to speak to obviously women took part in this study and they generously gave up their time to share their experiences there were midwives and nurses who helped with the recruitment so I want to obviously thank them my PhD supervisors Dr Pratina Forbes Mackay Dr Sarah Henderson Professor Susan Klein and Dr Valerie She-Leath because it was quite a complicated topic we had their expertise but also Professor Grant Cumming who runs the early pregnancy assessment network across Scotland so he provided the expertise and guidance and support to and obviously I'm very grateful to the Robert Gorn University for awarding me the PhD scholarship which enabled me to do the study and the Iolanti Midwifery Trust also gave me an award and Tommy's UK charity are particularly interested in research into miscarriage and I've obviously used some of their resources but they're a great resource for information and I can see some of your responses here that silent grieving you know it is silent grieving because women can't often you know they don't talk about being pregnant until they've got over that 12 weeks and so lots of people don't know you know why somebody's gone off sick or you know why somebody's upset and and it's that sort of taboos of miscarriage which makes it difficult so miscarriage matters it matters to midwives it matters to women it matters to their partners and it matters to their families and all I want to say is thank you very much for joining me a very special thanks to the virtual international say the midwife conference organisers in particular Pandora and Linda Wiley who've been very supportive and you know obviously do an amazing amazing job but so I can just going down at the questions I can see can you say a bit more about mindfulness and you know I think what are your experiences Ali yeah it's a useful tool for women yeah I think you know I think we need more research around where their mindfulness will reduce anxiety I know certainly as a midwife seeing women in the next pregnancy who've been really anxious just by looking at their body language and you know that sometimes it's just being able to see you more frequently because often when they come to see you after they've been to see you as a midwife they feel much more relaxed you help to allay fears and I do recall one woman saying to me that she would like to you know see me more often and would that be possible and I said I can see you as often as you feel you need to see me and she was you know I saw her regularly until she felt more able to feel confident that things were going to go well and I think I saw her probably at least every week until she was about 24 weeks and you know as midwives it's not always about you know looking after somebody's physical health but also it's really important that we look after their psychological health yeah so I'm just looking at some of your mindfulness is helping women and midwives and I think you know what we probably need is like a randomised control trial for women that are anxious and then target them and Andrea my mum had a miscarriage many years ago and never processed the grief of the loss of her baby as no one ever asked her about it so there you go Andrea that's just goes to show how important this topic is for us as midwives I think you know we are the avenue for women and women's health to help them make sense of things and it's really important that they don't blame themselves for something that actually is common and often there's no cause so Annemarie are there any specific reading materials that you might recommend for a midwife who is wanting to delve a little bit further into providing compassionate care? Yeah that's a good question I would say that if you look at the miscarriage association there's some really good information there and Tommy's UK charity they have they're in the previous slides they have a website with information for professionals as well so that's Tommy's UK charity research into miscarriage and I think you'll have great resources there around sensitivity and sensitive care. As we look at what's happening in the public media we can see that stars you know from Beyonce coming out about her miscarriage and then her near miss to Celine Dion they've all been sort of coming forth lately about their miscarriage do you think that this is helpful in shifting the paradigm have you seen that shift with them all? Yeah I mean absolutely yeah I mean obviously celebrities it's good that anybody is talking about miscarriage because what people don't know is how common it is and how how complex it can be to make that adjustment and I think that learning from women who have experienced miscarriage so being able to talk about it and share how they feel it is cathartic in itself so and you know obviously when celebrities start talking about it that's got to be a good thing it makes you realize actually because other people have miscarriage that it is common. Quite common and it's heartwarming to see that even some of the older celebrities such as Barbara Walters etc you know are still coming out and hoping that too that can help to heal perhaps some of the you've mentioned the the long-term loss that women may feel about never having been able to talk about this and so that women don't go to the grave so to speak. Having helped you know having been able to you know say goodbye and acknowledge their loss and I think that a lot of charities are really sorry a lot of maternity units early pregnancy assessment units are much more mindful now of that need to provide some way of helping people make sense of what's happened. Being able to speak absolutely Andrea absolutely support groups might be helpful so in some areas you know setting up a support group you know and I think that there's no warm particular thing that's going to suit everybody I think some women are going to want to go to a support group or some might want to access online blog type support where they're anonymous but they can share how they feel you know there could be you know other areas you know everybody needs to be treated as an individual. Thank you very much any last comments or questions I mean obviously it's really interesting to be able to see what's going up in the comments and there's obviously great sensitivity amongst us as women in the group and I think that looking at see the north of England now offers support memory boxes for miscarriage and early pregnancy losses so anything that will help is the way forward but we need more randomized you know randomized control trial. Well thank you for discussions on this topic you know we've learned that it's really not as uncommon and that we as midwives have a huge role to play in supporting women through the isolation and attempting to break past the taboos you know and the feelings of I did something wrong that can be a part of this as we care for women throughout their life cycle. Yeah well we thank each and every one of you for joining us we invite you as well to continue to join us throughout the day we have a few more sessions that will be lined up for the afternoon, evening or depending upon which side of the world that you're joining us from and knowing as well that there are evaluations that can be done and we're happy this year to be able to get a certificate of participation and for our time together. You can see on our chat box here that the survey is up in terms of giving feedback about this topic and other topics that you might perhaps enjoy seeing coming up in further future virtual international days of the midwife. Jude Field will be presenting in room two. We thank you all for joining us as we are with women for a lifetime. Thank you for the rest of your day. Thank you. Thank you everybody. Thank you all for joining us.