 So this session is the influences and decision-making in vaccine hesitance parents and pregnant women by Susan E. Smith. Sue Smith is a registered nurse mid-life with over 30 years experience. Most recently, Susan has been employed as a maternal child health nurse working with child and family health in the country's South region of Adelaide. In this position, Sue established an immunization clinic in the Murray-Malley region where her role was to coordinate and immunize clients ranging from six weeks of age to five years. Sue was also responsible for coordinating staff immunization programs as well as managing vaccine orders and cold chain maintenance. Sue has completed a Masters of Midriffy by coursework and research in 2019 with a publication of Women and Birth Journal entitled, Midwriters' Role in the Promotion and Provision of Encinatal Influenza Immunization. In 2020, prior to the outbreak of COVID-19, Susan commenced a full-time pay to PhD at Flinders University. Her project is entitled, Vaccine Decision Making and Pregnancy in Parents of Children Ate Zero to Five Years. The aim of this project is to explore the values, beliefs and choices made by pregnant women and parents regarding their decision not to vaccinate their children aged in zero to five years and to determine factors that influence their decision making and to give a voice to vaccine hesitant parents. I will now hand it over to Sue Smith. Thanks, Bill. And first of all, I do have to apologize. My dog keeps snoring and that's not me falling asleep. So thanks for the introduction. Yes, I am a registered nurse and midwife and a maternal child health nurse, but most importantly, I am a passionate immuniser. So I'm in the final stages of completing a PhD at Flinders University in South Australia. So today it's my absolute pleasure to present the results of a recently published study which was conducted as part of a larger body of my doctoral research. Most importantly though, I'm a mother, and a grown mother who believes passionately in preventing illness and supporting health and wellbeing in women and children. So as I said, the findings that I'm presenting today are from an exploratory online survey conducted by Qualtrics, which was published earlier this year. The paper that was published is entitled with weighing up the risks, vaccine decision making in pregnancy and parenting. The aim of this study was to explore the values, beliefs and choices made by pregnant women and parents regarding their decision not to accept immunisation, to determine the factors that influence this decision making and to give a voice to vaccine hesitant parents. So the objectives of this research were to explore when vaccine hesitant parents and pregnant women make immunisation decisions, to discover from whom and when vaccine hesitant pregnant women and parents obtain the bulk of their immunisation information and education, to explore the factors that influence those choices that the vaccine hesitant parents and pregnant women make, and also finally to gain an understanding of the experiences of vaccine hesitant parents and pregnant women. So immunisation is universally accepted as one of the most significant public health initiatives in recent times. Childhood vaccines alone have been credited with saving two to three million lives annually. However, vaccine hesitancy is a growing problem in middle to high income countries like Australia and has recently overtaken vaccine access as the primary barrier to immunisation uptake. Vaccine hesitancy has been described as the reluctance or refusal to vaccinate despite the availability of vaccines. This problem was included in the top 10 threats to global health by the World Health Organisation in 2019. Australia currently has high levels of childhood vaccine uptake with the national average for five year old children sitting at around the 95% mark. However, this figure does conceal areas of low vaccine hesitancy, which affects herd immunity and can result in the resurgence of diseases and has done in recent years. But up to 50% of parents and pregnant women have reported some degree of vaccine hesitancy. Immunisation in Australia is not mandated. However, the no jab, no pay and the no jab, no play legislation which were introduced in 2016 and 2017 respectively, they act as a financial incentive to encourage families to immunise children. While successful, this legislation has created considerable anger amongst vaccine hesitant families and had a greater impact on families from lower socioeconomic countries and areas. So vaccine hesitancy remains evident in all areas of immunisation, including pregnancy immunisation, which continues to reflect suboptimal intake in Australia. Pregnancy has been shown to be a time of high information needs. And it's an ideal time to provide immunisation information. It's also a time when vaccine decision-making commences. There are currently three vaccines recommended for pregnant women in Australia. And these include the Bordetella pertussis or whooping cough vaccine, influenza vaccine and COVID-19 was added to the recommendations for pregnant women in June 2021. So the risks associated with acquiring COVID-19 in pregnancy became more evident and widely known in mid to late 2021. Pregnancy already places women at increased risk of morbidity and mortality from vaccine-preventable diseases. And whilst there are limited studies on the impact of COVID-19 in pregnancy, the virus is thought to exacerbate these risks. However, anti-natal immunisation uptake remains suboptimal, as I previously said, with evidence to suggest that less than 50% of pregnant women are fully immunised in South Australia. Unfortunately, no data is currently available on the uptake of the COVID-19 vaccine. So the larger body of research from which these findings were drawn included three main points of data collection. These included the exploratory online survey using both open and closed questions, semi-structured interviews with parents and pregnant women and a ethnographic study. The latter two studies are currently under peer review and awaiting publication. So the recruitment for all three phases of these studies, previously mentioned, was undertaken via this purpose-designed Facebook page. The page also provided a link to the survey, as you can see here, as well as a chat function for the ethnographic data. A predominantly qualitative exploratory online survey was conducted on vaccine-hesitant parents and pregnant women. 106 used the online survey via Qualtrics. This methodology was chosen as vaccine-hesitant parents have shown a preference for an online environment where they can choose to participate or not in an environment that's relatively risk-free and somewhat free of criticism. This survey included a combination of closed and open-ended questions. Convenience sampling was used to recruit pregnant women and parents who identified as vaccine-hesitant. So all parents and pregnant women who were pro-immunisation were excluded from this study. The survey was promoted by paid advertisements over the course of six months on the Facebook page, which you've previously seen. So prior to dissemination, the survey was piloted on 29 vaccine-hesitant parents and pregnant women, just to assess readability and usability. The survey dissemination began in June 2021 and remained live until June 21. The chat function remained live until December 21, collecting data for the ethnographic study, which I hope will be available to all soon. So the survey included 30 questions with a combination of demographic information and questions seeking attitudes to immunisation, information sources, influences and opinions on COVID-19. The dissemination of this Facebook page was not limited geographically. However, participants were predominantly from across Australia, with two participants from the United States of America. Quantitative analysis was conducted on the demographic data using SPSS version 25. And qualitative data were analysed manually using inductive thematic analysis, following the guidelines of Braun and Clark. Now, the quantitative aspect of this study compared the incidence of vaccine hesitancy with the CIFA or the Socioeconomic Index for Area Schools according to Australian postcodes using an, I can't say this, an analysis of various or ANOVA data were obtained from 106 participants, however, only 104 were included in this aspect of the study as they were from Australia. Only those who stated that they were not in favour of immunisation or undecided were included in this aspect of the study. So over the total 104 participants, 70% self-reported that they and their child were unimmunised, whilst 30% were partially immunised. This was based on a personal assessment of the overall immunisation status and not specific to any individual vaccine. Gender was not a prerequisite for participation in this survey, nor was it asked as opinions were valued from both mothers and fathers. 15% of the participants identified as being pregnant with ages ranging from 18 to 50 with the majority in the 30 to 39 year old age group and children range from zero to five years with the majority in the three plus years. So analysis was compared, compared the levels of vaccine hesitancy with the CIFAS scores I previously said and whilst the results were not significant, they did demonstrate a trend for vaccine hesitant parents and pregnant women to reside in areas of lower, sorry, higher socioeconomic status. So the three main themes which were identified by thematic analysis as the most influential in refusing vaccines included vaccine safety concerns, legal concerns, as well as the effects of a previous negative immunisation experience. 94% of participants expressed concerns about vaccine safety and those concerns included vaccine contents and the safety of the industry in general. However, they didn't differentiate between vaccines or vitamins such as Canakian or vitamin K, which demonstrated a lack of understanding and knowledge in this area. Concern was also raised about the new mRNA or messenger RNA vaccines such as COVID-19. This is a new vaccine and more information should be provided to parents about the benefits of this particularly in pregnancy. These factors combined with considerable distrust of the pharmaceutical industry resulted in high levels of anxiety which negatively impacted their immunisation decision making. A further area of concern raised by parents was the lack of information provided by healthcare professionals which affected their ability to give informed consent. Other level concerns were raised by participants including the belief that the no-jab, no-pay legislation was coercive in nature and legislation which has acted to isolate and marginalise parents and pregnant women and has affected them both financially and socially. Participants also raised concerns about the lack of vaccine injury compensation scheme in Australia. This was a factor identified by many participants as an influential factor in refusing vaccines. These factors combined with a general distrust in the pharmaceutical industry and its practices resulted, as I said, in high levels of anxiety amongst participants and negatively impacted their immunisation decision making. Evidence also suggested that a previous negative immunisation experience could adversely affect future decision making. Participants were asked whether they or someone they knew had a negative experience during or after an immunisation which may have affected their decision to reject vaccination. A surprisingly large number, 90% in fact, stated that they did have a previous negative experience and only 10% had not experienced this. The use of alternative therapies was also evident in this survey and whilst not considered to be a direct cause of vaccine hesitancy, was associated with a lifestyle choice which participants believed supported wellbeing and immunity. So qualitative results obtained in this research indicated that participants held a variety of personal immunisation beliefs. However, most felt that they had the right to choose whether to immunise or not, which of course they can in Australia. Some participants felt that the vaccines were riskier than the diseases they protected against. Whilst one participant stated quite correctly that all vaccines should be considered dangerous medical interventions, when dealing with otherwise entirely healthy members of the population, there must be transparency about the risks and benefits. It should not be a one-size-fits-all nor should vaccination be dismissed as safe and effective without due attention given to the reality of side effects. Several participants believed that insufficient information was provided to parents and pregnant women to make informed choice. The findings of this research suggest that the no-jab, no-pay legislation introduced by the Australian government had the greater effect on people of lower to middle socioeconomic status. The legislation was described by some participants as taking advantage of lower socioeconomic families and a coerced choice. The no-jab, no-pay legislation excludes families of unimmunised or under-immunised children from some financial benefits but also excludes children from access to preschool education in Australia. For some families, this legislation means a loss of a substantial second income for a minimum of five years until a child is old enough to commit school. Whilst other participants in this research immunised only enough to continue to receive financial support. So participants are asked to identify the sources of immunisation information which they used to support their decision-making. These sources included friends and family, the internet, social media, scientific evidence such as PubMed, as well as books and websites by anti-vaccination advocates like a Robert Kennedy junior, as well as traditional sources. One participant stated that she'd read the entire hand side of Andrew Wakefield's fraud case. Now Andrew Wakefield was a discredited doctor who fraudulently linked Measles' vaccine with autism. This information suggests that we should not, as immunisers, assume that vaccine-hazardant parents are uninformed. However, the sources of information may or may not be credible sources. So vaccine decision-making was influenced by many factors including the source of immunisation information which included the use of alternative practices to support health and wellbeing. Many participants reported that the use of alternative practices often referred to as oscillogenic parenting were used, included therapies such as alternative therapies, lifestyle factors, dietary factors and supplements as well as public health factors such as fresh air, exercise and avoiding crowds. Homeopropyl axis or the use of diluted preparations generally provided by a homeopath to provide infectious diseases was also mentioned as a source of information and support by some participants as was the use of long-term breastfeeding. Participants who did not use these sources of information or methods of support for their immune system stated that they only could not do it because of financial reasons. So participants were asked who were the most trusted sources of immunisation, information and general practitioners, nurses and midwives made up 65% of that source of information. Whilst less than 16% of participants cited obstetricians as an information source. This is despite 21% of women receiving pregnancy care from an obstetrician in 2017 in South Australia. So it could be argued that only those women who elect to shared care or midwifery model of care will have access to these important sources. Additionally, women who elect an obstetric model of care could arguably remain under informed. Nurses and midwives as well as general practitioners are trusted sources of information as I said making up 65% of the information sources. However, there's a clear need for an enhanced syllabus to support nurse and midwifery undergraduate immunisation education across Australian universities including in areas of vaccine hesitancy and motivational counselling. There's also a need for a reminder to be placed in pregnancy handbooks to remind healthcare professionals to discuss both pregnancy and childhood immunisation at the first pregnancy visit. So participants in this study expressed a desire for balanced information and several had notable quotes when saying I've always been open to getting information from both sides and weighing up the risks. Whilst another said I didn't want to rely on just one source but a personal experience with a family history of adverse reactions is hard to ignore. So based on the importance of providing accurate and credible immunisation information to pregnant women, participants are asked whether they had received information on childhood immunisation in pregnancy. Whilst 65% had received advice a whopping 35% had not. This lack of information at this critical time of decision making can result in information seeking from non-traditional and less credible sources such as the internet and social media. So participants were also asked to provide their understanding of the risks versus benefits of vaccines. A surprising 91% believed that vaccines were a greater risk to an infant than the diseases they protected against. This demonstrated a lack of knowledge and understanding which should have been provided by healthcare professionals as a priority early in the decision-making process. So in conclusion, this study has confirmed that over 70% of participants began immunisation decision-making in pregnancy. This is clearly the optimal time to provide information about both pregnancy and childhood immunisation. This study has also shown that many vaccine-hesitant parents and pregnant women are from areas of middle to high income. Hence immunisation promotion activity should also be focused in these areas. So whose job is it? Of those who did receive advice, nurses and midwives are among the most trusted source of immunisation information in pregnancy. Along with GPs, midwives and nurses play a significant role in the provision of anti-natal immunisations. However, nurses, midwives and GPs have demonstrated the lack of knowledge in dealing with vaccine-hesitant parents. Additionally, nurses and midwives have reported feeling inadequately prepared for their role. Evidence has also shown that midwives currently receive minimum or unregulated graduate immunisation education, on average less than four hours of immunisation education in a three-year degree with many reporting inadequate preparation for this role. This must be improved to adequately prepare new graduates for their important role and changes are already happening at Fenders University where immunisation has been included in the midwifery syllabus. 35% of participants reported receiving no immunisation information in pregnancy. Pregnancy has been shown to be a time of high information needs and a critical time for vaccine decision-making. Therefore, it is vital that parents and pregnant women have the opportunity to discuss both pregnancy and childhood immunisations early in pregnancy. Concerns over vaccine safety have been shown to have a major influence on vaccine uptake and this is an area that needs support with accurate and timely information in pregnancy, along with assistance to work through the risks and benefits debate. This study has also revealed that a previous negative immunisation experience influenced vaccine decision-making. It's become clear that adverse events, even minor ones, must not be overlooked or understated as they are potentially influential in future immunisation choices. Finally, the role of midwives in the promotion and provision of immunisation, both anti-natally in the first week of a child's life, cannot be understated. Educators must include immunisation and motivational counselling in the syllabus for all midwives to adequately prepare them for this vital role. So recommendations from this research include the development of an enhanced syllabus to support nurse and midwifery undergraduates in immunisation across Australian universities. A reminder must be included in all pregnancy handbooks to discuss both pregnancy and childhood immunisation in early pregnancy, when information seeking is at its height and decision-making is beginning. Additionally, the inclusion of pregnancy as a reason for immunisation in the Australian Immunisation Register would be ideal. The Australian Immunisation Register is an all-of-life register in Australia which records individual immunisations. It currently has the capacity to record Aboriginal status as a reason for immunisation, but does not have the capacity to record pregnancy status as a reason for immunisation. Inclusion of immunisation status in all pregnancy outcome statistics should occur. This is the only way we can provide accurate data on perinatal outcomes and the association with the vaccine status. Additionally, midwives must discuss the importance of childhood immunisation in the first days of a child's life. Many participants in the study reported being confronted by the nature of the first vaccine, which in Australia is the hepatitis B vaccine given in the first week of life. With inadequate education, large numbers of families are likely to refuse this vaccine and sadly, many midwives are unaware of the rationale behind the timing of it. And finally, immunisation, education and promotion must be universal, but should also include families from middle-to-high income countries. And I can see there are some questions there. Mel, did you want to... I'm getting it on. Just I've got my, um... Publications. Publications. Publications are coming up. They're there. It's not there. It's not there. That's okay. It doesn't matter. Not important. There's my references. There we go. And go ahead. So I haven't seen the earlier questions, but I can see some later ones. Yeah, thank you. So I think like I would love to dive deeper into your data. I imagine there'd be other people the same, knowing a bit more about the cohort and a bit more about specific aspects of them and what we can do. So it does definitely sort of indicate that we do need to incorporate a bit more into the intonatal period. Sorry, I can hardly hear you. Could you speak up? Can you hear me now? Yeah, sorry, it's raining here, so I'm not getting a good connection. It does sound that we do need to add a bit more focus in the intonatal period about a bit more than what we're currently doing. Yes. But we do have some questions. So Gemma, so Gemma sort of says that it is likely that new maternal vaccines will become available in the near future. For example, ROC. As a midwifery and immunising provider, what are some of the challenges that you see? And secondly, how can we better prepare the profession and parents from maternal vaccine in the future? Well, that's a very cool question. Well, that's a very cool question. Yeah, so there you go. Yeah, I'll have a go at it. Thank you, Gemma, for a very insightful question. Yes, there will be new vaccines and I think the only way to prepare parents is to prepare providers. And unfortunately, our education has been pretty shoddy up until now, and I think once we are better educated we'll be able to explain the rationale behind these vaccines better and then we can pass on those gems of wisdom to mothers and fathers in pregnancy. Are there any specific points that you think would be good to include in the education program? Well, I think, yeah, some wonderful courses available in South Australia and I presume they're available nationally and internationally which includes every aspect of immunisation from cold chain management through to immunisation provision and the rationale for inclusion of vaccines and the times for the inclusion. So I would like in a perfect world I would like to see all midwives having access to that course or courses like those in the undergraduate area. I don't think that will happen but I think they will be available in a postgraduate environment. I think in Australia and I don't know if it's Australia or just in our state that we have access to a certain amount of funding for our professional development and I think it would be lovely if midwives could prioritise immunisation knowledge because it's an area of knowledge that will cross all spheres of midwifery practice from antenatal to postnatal to labour and delivery and my particular area which is community and postnatal so it's really important that we are all informed all the time. Yeah, you mentioned that you don't think we'll end up in the international education soon for midwives. Is there any specific barriers I think time, the time out of time I think certainly at Flinders they've been looking at increasing the year like adding another year to the midwifery course to fit everything in and at the moment it's a low priority I'm working on it. I know there's educators and researchers listening so it would be interesting if anyone has any comments in the chat box about what they're currently doing programs, is it a three year undergraduate degree, is it a four year at what point do you think could actually be good to introduce it so would it be a second new topic and where would the postgraduate midwives in Australia fit into that? Yes, very good question. We can move on to Emily's got a question as well so we can move on to the next question but people are welcome to throw those answers into the chat box. Do you think there can be some conflicts felt by some midwives between women affected and individualised care and providing vaccine recommendations? I believe there already are some conflicts in this area but I think we must look to the bigger picture and recognise that without the correct information pregnant women and immediately postnatal women aren't informed to make an educated choice but they're facing a lot of their decisions on information they glean from the internet and social media which is highly emotive and highly critical of some immunisation aspects. For example, the COVID of all the participants in my study 100% we're going to refuse the COVID vaccine now that's based on emotion rather than knowledge so it's okay to be women-centred and provide individualised care if you're also providing accurate education in my mind. I can speak for a moment of personal experience with other people so they're adding to the chat box we do know that one of the leading things that help people to make a choice around vaccines is care providers discussing it with them and making a recommendation so there is a bit of work happening around decision aids which I believe people have been finding helpful so I know I used the COVID-19 one a lot so I did a group of six women in my antinatal group antinatal care at some point during last year I think it was and initially all six were planning on declining the COVID-19 vaccine just because of fear and we all understand the reasons around it they're quite individual on that at the end only one of them declined it so five of them after having a couple weeks of different education and individualising care to each woman they five of them actually changed their mind and got the vaccination that's what it does so there are things becoming more available so there is decision aids and cosy and that sort of thing to help us provide the information to the women we probably do need a bit more time and probably a bit more midwives in this space so if anyone out there is interested in joining the research world come along yes I agree I totally agree does anyone else have any questions I have one from one PhD candidate to another Susan what was your most interesting part of this PhD study for you oh challenging my personal beliefs about people who refuse vaccines that was just so confronting as a long term immuniser and a passionate immuniser at that meeting people who have a vaccine hesitancy was a real learning curve for me and I found you know what they are normal people with normal fears and anxieties just getting the wrong information and I think it was that aspect of my studies that really woke me up and said you know what the fault is not theirs it's ours because a recommendation from a healthcare professional is a predictor in the uptake of vaccination there is nothing more certain than that and if we can't communicate the correct information the problem is ours I think at one point Covid-19 vaccine was because it was so new it wasn't so much the wrong information there was so much different information correct yeah correct no worries so we are sort of getting to the end is there anything else you want to mention no I think that's all good unless there's any other questions I'm happy to answer questions so this year's got vaccine hesitancy and those not taking vaccines is due in Canada so even with the best information many prefer to wait to get Covid or Covid? wait to get Covid or the vaccine? the vaccine I guess potentially not maybe not there's some wonderful immunisation researchers in Canada Eve Jubay is one of them she's extremely well published she does some wonderful work in this space yep so they wanted to get natural immunity so long as she survives the process and that's sort of an individual decision that everyone has to make absolutely but in pregnancy it's a little more concerning