I think we're going to get started and I would like to welcome everyone to our, I guess the first in our 2016 series, the Social and Behavioral Research Branch hosts scientists who are at the intersection of social and behavioral research, genomics and health. Today we have a wonderful person coming on to give a talk, Dr. Megan Lewis. In 1992, Dr. Lewis received her doctorate in social ecology from the University of California, Irvine. She is currently the director of the Patient and Family Engagement Research Program in the Center for Communication Science at RTI International. In addition, Dr. Lewis holds an adjunct faculty position at the University of North Carolina, Chapel Hill in the Gilling School of Global Public Health. Dr. Lewis has a unique expertise in health-related interpersonal communication. That's where I know her work. She's been really formative in terms of the science that goes on in my group. Her research aims to leverage this expertise in applying social and behavioral science theory and health theory in the development of basic science as well as the development of interventions focusing on health promotion and disease management. Her research is distinguished by the use of dyadic and interpersonal theories as well as complex analytic methods to understand how couples and family functioning affect a wide array of health behavior and disease processes, including decisions related to genomics. So today, Dr. Lewis will share aspects of one of her current research efforts, the NC NEXIS study in which she is examining parental decision-making processes that are related to genomic sequencing in newborns and children. Thanks, Laura. Thank you. Can everyone hear me? Thanks so much. And I'll try to speak to the entire room, although you are a little disadvantaged over here on the left side. I want to say to everyone, it's great to be here. I feel like I said this before, I've kind of come home to a tribe that I didn't know that I was missing, but it's really been great. The NC NEXIS study, which is one of the NSITE centers funded by NICHD and NHGRI, has really, really spawned my interest in genomic communication, and it's not something I had done before this particular project, but these are really challenging issues to address. Very sticky because not only is it difficult, as you know, to communicate genomic sequencing information in the context of a family related to a newborn or young child, it gets even stickier in terms of the ethical, legal, social implication issues that revolve around this area. So I'm going to be talking about some of my work that's related to the NC NEXIS study, and people have asked me, hey, are you in the field? And we actually are not in the field quite yet. We just finished a year-long process of review with the FDA to get an investigational device exemption review completed, and we're granted that in last December, which we didn't really plan on having to do. That just kind of presented itself, and then we just have IRB. So I'm going to be talking about the formative work that's leading up to the trial that we're going to be launching in a couple of months. So to start, I want to acknowledge my project team members. These are really the core team members at RTI and UNC. And besides these people, there are many, many other people who are involved in this project, and Cindy Powell and Jonathan Berg are the center co-PIs for the NC NEXIS center. And we have these combined areas of expertise, along with many others, because this really takes a village to build a decision aid to help support parents in this area of work. And I'm really not going to be talking about some of my more basic science, theoretical hypothesis testing work. This is really all about translational work. So how do we take the information that we know that might be evidence-based and translate it and use it in a way that's very accessible to parents when they're making decisions like this? So that is, I'm coming from that perspective today. So I'm going to be talking about the NC NEXIS aims and why it's important to look at these things. The challenges that we face as part of the work of the center, what we're doing to address those challenges, and I'm going to be talking about results and some formative qualitative interviews that we did with couples. This is the dyadic part, and the discrete choice experiment that we did with parents was an online study. And then show you a little bit of the screenshots from the decision aid that we've developed based on health communication best practices and principles as one of the formative work and experimental work.  So the overarching center aims are here is really to evaluate how next gen sequencing is applied to the newborn screening can extend the current utility in newborn screening and to devise and evaluate a clinically oriented framework for analysis of NGS-NBS and then develop best practices for incorporating it into clinical care. And so the center is made of three projects as most centers are. And the first project is a sequencing project, and that project is led by Jonathan Berg. And they're developing a pipeline of whole exome sequencing data to study NGS-NBS and developing an analytic strategy for what we're calling, and I'm saying it's incidental findings here, but this isn't really incidental findings in the kind of context that we typically think of like a diagnostic context. So here parents are actually making decisions about a whole wealth of information, so nothing is truly incidental in this context. And then they're developing and evaluating novel bioinformatics approaches for NGS-NBS. The second project is the clinical implications project, and they're looking at whole exome sequencing as a diagnostic tool that could be used in newborn screening and determining the capacity and utility of whole exome sequencing to extend the range and current newborn screening technologies. So there's emerging evidence that newborn sequencing and whole exome sequencing, whole genome sequencing could be applied to newborn screening, which is typically not genomic sequencing at this point. So there's emerging evidence that it would be applied in this area, but the full range of its applicability is still to be determined. So in this clinical study, three groups of children will be involved in cohort study. So the first one is children who are zero to five, who've already been diagnosed with one of four of these genetically based health conditions. The second cohort is a cohort of children with rare diseases, and these were added because there's a concern that will reach the end that's required, so the range of potential conditions were expanded. And then the third cohort is a well-child group, and these are newborns from birth to three months old who will also be as part of the study with their parents. And this is the cohort where people sometimes when I say this go, what are you doing? Like how are you ever going to do this in an ethically responsible way where you're getting parents consent and approval to do genomic sequencing in their newborns? And that's one of the challenges that we're trying to address here. So the ELSI project is the third project, the Ethical Legal Social Implications Project. And in this project, we're trying to refine and describe in lay terms meaningful bins of genes and information that would enable parents to make informed decisions about what they want to learn, what results they want to get back about their child or newborn to develop and evaluate the effectiveness of a decision aid. And so much of what I'm going to be talking about today is preparatory to that decision aid and then apply the decision aid and it's mostly a randomized trial. I say controlled as a little bit of an overstatement here. And look at parents' decision to participate in the study and do when they, if they, do they feel more informed and more comfortable consenting to have this type of sequencing done for their child, their willingness to accept genetic sequencing information for their child, the choices of the kinds of information that they want to learn as part of the study and then the factors, the social and psychological factors associated with the parental choice and then are there any consequences of the return of these kinds of results for children and families that are part of the study? So the children consequences is something we can't really study in the, because it's a really short term follow up, but certainly for families, we're going to look at things like anxiety and those other kinds of short term consequences. So why is this important? So newborn screening is arguably is the most successful public health program that has ever existed. It identifies children with treatable conditions at birth and improves their health and survival. It's rapidly expanding and changing as new technologies are available and new genetic discoveries come on board. But the utility and as I said, it's starting to emerge that there is some utility to the application of next generation sequencing to newborn screening. But the real kind of nail in the coffin has still yet to be determined and there's a lot of resistance in the newborn screening community to use new technologies beyond what is currently being used. And there's ethical issues as well. Like what do we do with all of the information that is generated from sequencing if it was whole exome sequencing or whole genome sequencing? What do we do with that information when we're only focusing on a subset of conditions that are treatable? And so that's really at the core of what we're trying to understand in nexus. So we really don't know about the consequence of parents for learning this kind of information. And so that's one of the things that we are trying to understand. And when I say again, incidental information, that's kind of in quotes here. And so I think this is also an important issue because not only can you can get your child's genome sequence online now. You can go online, pay some money, probably a lot of money, but that cost is declining and you can get that information. And not only that, I was at a recent meeting at the Hastings Center last year and there was a representative of 23andMe and they said, well, we're not going to do newborn screening tomorrow, which made it think, well, maybe the day after tomorrow that might be going on. And so there's a real strong momentum for industry pushing, pushing, pushing related to newborn screening and other kinds of conditions that might be treatable. So to me, it's incumbent on us as social behavioral scientists to try to understand what are the consequences and what can we do to support families. So really, I'm focusing here on the translational challenges. So we know that the application of next generation sequencing in the pediatric population really requires a special examination of these ethical challenges and the clinical benefits. And really how do we provide support for families that are making these decisions now? And then how do we handle the disclosure of other information that is available to them once they learn these things like carrier status, genetic susceptibility to childhood onset conditions that are not treatable or genetic susceptibility to adult onset diseases that are treatable or not. So all of these are kinds of information that people could learn if they started to embark down this road. And so another issue that's come up a lot when I present this study is that how can you let parents make these choices when really you are undermining the child's autonomy and the child should be able to make these decisions when they get older. And I think these are real concerns. Biologists are very concerned about undermining autonomy and increasing potential risk. And of course, I'm speaking to the choir here when I say the amount of information is absolutely huge. How do we communicate that information in a way that at least in the baby steps when we're doing this, and I didn't mean that as a pun, maybe I'm getting like the psychological influence of this little baby here. But when we go that we can really reduce this information in a meaningful way that people can make informed decisions. This information is uncertain and conditional. And parents must make mutual joint decisions about this information. Our IRB has ruled in previous studies and in this study that if both parents are reasonably available, they must be part of the consenting process and they must be part of the joint decision making process about what types of information that they want to learn. Now if a parent is deployed to Iraq or has some other is not available then the remaining parent can make those decisions by themselves. So, you know, it depends. And some of the really formative qualitative data that we have is shedding light on the kinds of mutual and joint decisions that parents are comfortable making. So what are we doing to address these challenges? So in the first project, project one, Jonathan Berg is adapting some of his previous work developing an age-based metric system that will help us classify the really huge amount of genetic information into smaller chunks or bins. We're developing a decision aid to support parental decision making. And of course there's the hypothesis in the RCT. Will this help people? Will it make them feel more informed? Will they make choices that match their values and beliefs or not? That's still to be determined. And we're conducting formative work and user-centered work and experimental work to develop a decision aid that should, if all the evidence about decision aids is true, help them make more informed decisions about their choices to participate in the study and about the types of information they want to learn. And then of course we're going to be evaluating this decision aid in the RCT. So this is the age-based modified metric system. So on the y-axis is medical actionability. And on the x-axis is the onset of a genetic condition. And so in this quadrant here is next-generation newborn sequencing. And so, and then there's childhood onset, non-medically actionable, adult onset, medically actionable, and adult onset, non-medically actionable conditions. So what happens for a gene variant to get into one of these bins or buckets is a extensive review process, very systematic, is undertaken. And a binning committee meets and discusses the evidence, treatments that are available. When is the age of onset, which can be very murky because for many conditions some of the symptoms are not well known because we don't have a knowledge base about some of them because it's not caught early enough. And this group process then scores each of these genes in a systematic process and they're placed into one of these categories. So in the NC NEXIS study, parents will have available to them next-generation newborn screening conditions and others like them. So childhood onset conditions that have some medical treatment or actionability, they will have available to them depending on their study group. Childhood onset, non-medically actionable conditions if they would like to make that choice and they're in that particular study group. They will have adult onset medically actionable conditions as well as a choice point and then also carrier status. They will not be able to learn adult onset non-medically actionable conditions for their child and that was a decision that was made for a lot of different reasons, primarily ethical issues which is what benefit does that provide for the family at this very young point in time and maybe 20, 30, 40, 50 years from now that things will be actionable. So I want to tell you a little bit about the formative qualitative studies we did with couples. And we did this really in a very tested, we tested materials and asked open-ended questions about all aspects of the study and about messaging we were going to be using in the decision aid and we really wanted to understand how they communicated and made decisions about these kinds of screening and testing results for their child and newborn and what characteristics of the conditions parents find important to learn this information about their child. So the sample was 33 couples who were married or in a committed relationship and we had some nice balance across race. We also were interested, would there be differences based on pregnancy status? So is someone pregnant? Did they have a recent birth or do they already have some previous experience with genetic testing because of some childhood condition that they were grappling with with their child? And so really the end here is 66 because we're working with dyads here. But I can tell you off the bat there's no difference between pregnant, recent birth or childhood experience when we looked at the themes that were generated from the qualitative study. So we had some balance by race and gender. The average age of participants was 35. Most were more highly educated even distribution across income categories and most people were working for pay. People completed a brief questionnaire and then they engaged in a pretty in-depth 90-minute in-person interview with both couple members present and we asked about their general knowledge and opinions. We gave them definitions of the categories of information we would be using and asked for their feedback. We asked why are they or why not they would not choose this kind of information what they would want to know and then how they would work together to make these kinds of decisions should they choose to learn them. And then we also had them fill out decision worksheets separately. So we asked each of them to fill out categories of information of the kinds that I just told you about. So childhood actionable conditions and newborn screening things, childhood non-medically actionable conditions, adult actionable conditions and then carrier status. And we weren't going to provide the adult onset non-treatable or non-actionable conditions but we were curious what parents and how they would react to this information. So we did include these in the interviews although they won't have that information available to them in the next study. So they completed these things separately and then they shared their answers and part of what I'm going to be talking about today is related to the coding of these communications and then we have two papers that are coming from this that are going to be under review quite soon that look at kind of the communication dynamics among them and then some of the information I'm going to be presenting about their collaboration and their agreement about these categories of information. So we audio recorded and transcribed the interviews used in vivo, we developed code book, we refined, we coded, we refined. Anyone who does qualitative work knows that you code and refined a lot. We looked at reliability and did all the kinds of things you would do when you want to have a nice systematic qualitative study and then we used a framework analysis approach to look at themes that emerged through the course of these interviews. So the first thing I want to present is the decision results because to me this is a really interesting part of the study. So we had 33 couples, so most of them, yes, they would participate in a study like NCNXIS with the kinds of information that we provided in our informed decision consenting brochure which is part of a long set of decision aids that are part of this study, but not everyone did. They said they would need more information and many of the times that information they wanted was like logistics and nuts and bolts and very commonly like how is this information going to be stored as a private? Is it going to be an electronic medical record? Some of these people were very savvy, as you can imagine some parents who had some experience working with their child who has a genetic disorder. So most said, you know, they would want traditional newborn screening information in similar conditions, although there was some that they could not arrive at a mutual decision about that kind of information even though these were kinds of things that parents get back in a routine way. Would they want childhood onset conditions with no medical treatment? And so here's where we start to see a little bit of breakdown that they might say no, they don't know no mutual decision or there's just not enough information to make decisions about that. Adult onset conditions with medical treatment, here's again where it starts to break down just a little bit where they'd say don't know or they couldn't arrive at a mutual decision in the course of these interviews to be able to make a simulated decision in this context. Adult onset conditions with no treatment, here's again where there was a very big difference where there was a lot of couples who said we couldn't reach a mutual decision or it's no or we don't know, there was a lot more in decision in comparison to the other categories and carrier status as well was a place where it started to break down and there was, you know, do we need to know this information and why would we find it beneficial? And so one of the contributions of this, just even this table is when we've started to work in this area is many times the question is do you want this information, genomic sequencing information yes or no? And we find even in adults and sometimes in parental decision making, people uniformly say yes, I want to know this information. But when you start to break it down to categories of information based on actionability and age of onset, the conversation starts to change a bit and people start to refine their answers a little bit more. So that's one of the contributions that we're finding with our qualitative work. So we also looked at the themes about the decision to receive this kind of information and we looked at reasons for and reasons against and so these are overall the categories and we found that there's benefits to the child, there's benefits to the parents, you know, that they liked that the information would be confidential but there was some concern that they wanted the information to be used to help other children and there was practical implications about the study that they liked, that it's free and they get, you know, I get to get my child's genome sequenced. And then there's pros and our example of cons and risks. There was aspects of the sequencing that really disturbed them when we described it like are these tests accurate? How do we know what's really happening in terms of false positives or false negatives that, you know, there's their conditional kinds of information that are being presented to them. So we don't really know how something serious would be in the future. They're concerned about psychological harm, stress, breach of confidentiality. There was a variety of values of beliefs that parents discussed as either being in some cases against doing something like this. You know, why should we do this now unless we have a reason to know this information? So there was a variety of kinds of information that emerged the seams related to parental decision making. When we looked across the different categories of information we found a kind of, I would say a similar pattern in this qualitative data which is when you look at medically actionable childhood conditions, there's a few things this is great. We would do this. We can't really think of a huge number of risks to doing this. But as we get to these kinds of things that are like a non-medically actionable adult onset or carrier status, there was more uncertainty. There was more concern. And what we're doing with these, we call these values and beliefs. The verbatim values and beliefs that we learned in the course of these interviews are actually fed into the decision aid. And so there's a values sorting exercise that parents go through and they are able to sort their values and beliefs that come from this formative work and then input their own into the decision aid as a way to help their decision making process. So our conclusions from this work and some other themes that I'm not presenting right now is that couples really desire making collaborative decisions. It was mentioned more than once I would hate to make this decision by myself but in fact we will have single parents who want to participate in this study making this decision by themselves and so one hypothesis could be is do parents when they make these decisions outside the social context experience more distress or more anxiety as a result of that decision making. Agreement declines with greater uncertainty and there's many many different values or perceptions of risks and benefits that we can use in the context of a decision aid to help people clarify what might be important to them to help them make more informed decisions. So the other I want to call formative work all this was a pretty large formative study is that we launched the discrete choice experiment which was an online study to greater understand parental preferences in this context. And so discrete choice experiments are valuable methods for understanding information preferences and how people trade offers and benefits in a kind of comparative approach. It's an economic method that's used a lot by economists like how much are you willing to pay for this drug is a very common application of this method. It reveals how people value various attributes or characteristics or issues related to a problem relative to other characteristics and attributes. It's useful for studying highly correlated attributes which is probably most of the social world and we use this really to engage parents as a way to understand these characteristics of genetic conditions that might help drive their decision making. So we identified attributes of genetic health conditions that might be related to parental preferences based on a systematic review that was actually done around newborn sequencing and then we were going to use some of this information to inform the development of our decision aid and develop messaging around it and then just to build the evidence base on parental decision making for next generation sequencing because there's not a lot of information in this area and we specifically focused in our study on non-treatable childhood conditions because there's not a lot of experience for parents making those kinds of conditions so we defined these attributes and attribute levels for the course of this experiment and again part of this was based on the systematic review part was based on clinical input from the genetic counselors and geneticists that are part of this team and we did a lot of formative work in cognitive testing of these attributes and levels as well to make sure that people clearly understood what we were talking about so we looked at the chance that something would develop and define these attributes they would 90% chance 75, 50 and 10, the age of onset would it be less than one year all the way to adulthood the speed that the condition might get worse rapid, moderate, slow and stable and so on and so we manipulated all of these attributes and levels in our discrete choice experiment so we used a deoptimal design please don't ask me about the logistics of this because I was working with a really well-trained economist to do the design and some of the analysis and the wonderful Ryan Pequen who many of you know was also involved in this analysis I feel so fortunate to have him as part of our team and so people were randomly assigned to complete 8 choice questions which showed two different profiles of a genetic condition profile A or profile B and we randomly vary the attributes and characteristic levels across these different profiles and across the sample of the people who are in the study and then use the conditional loge at regression to estimate the implicit decision weights or preference weights that might be consistent with a pattern of choices again across the sample because if we were going to ask people to make all possible comparisons those people would still be doing the study I mean they'd still be and we'd still be slogging through so there's nice ways that we can look at balance across the design so this again was an online sample of over 1200 parents who had a child under age 5 we were very interested in race and gender differences and in this study design my understanding is if you want to look at subgroup differences you basically double your sample so we had a really big hefty sample anticipating that we would find race and gender differences but I can give you a peek under the hood which is we didn't find big race and gender differences and I think it could be a result of using the online panel versus a community based panel or cohort but that's something we still are interested in exploring we didn't find any differences based on some of the kinds of measures that we took for medical mistrust or numeracy and literacy and some other kinds of things you typically might expect to find so we're still exploring that as well so parents had to be 18 to 40 they had to have a child under 5 and speak English and again stratified by race and gender and so our sample turned out to be mostly married not surprising but also a large component of single parents as well there was representation across educational levels which I think is good and employment most people were employed so people entered the survey and then they're given information and characteristics about the attributes and levels and so again we did really extensive cognitive testing of this survey before we ever launched it and then when people come into the survey there is a period of training basically to help them understand what we're going to ask them to do and so they said okay what's a risk array so we told them what a risk array was and we explained it and you said what do we mean by a condition that has the age of onset we explained that and then we give them a practice question so by the time they get to the actual experiment they've been in the survey for quite a while and that training helps them make those comparisons in a pretty and I think it worked very well in our case so again we focus on non-medically actionable genetic conditions which we define for them and we looked at those seven attributes with the varying levels that I presented in a previous slide and then they were presented with the eight tradeoff questions which said which genetic test report would you be most important would be most important to you to learn if you had this type of information to choose from and then they answered these psychosocial and demographic questions so here's an example of one of the profiles that they might have as part of this study and they answered eight of these and so we varied again the different attributes along this along this column here and then the age of onset you could see five or five to twelve in this example and they were given you know here's a chance that it would develop and so these types of things they made eight of these choices as the part of the experiment and then the dependent variable that I'm going to talk about today is which would be more important for you to know profile A or profile B and so then we looked at these comparisons across the sample to figure out what is the most important thing that parents want to know based on the kinds of profiles that they were viewing this slide came out this is one of the slides I had a little slide crisis this morning that came out all jumbled like a scrambled egg but thankfully it looks good here so this is just overall the condition attributes just overall without regard to the levels of those attributes and we found that the likelihood that something would occur was by far the most important thing that parents wanted to know if they had these profiles to choose from and so that clearly was most important for their decision making quality of life was not important of all on the other end of the spectrum the level of physical and mental disabilities was also important as was the age of onset and the lifespan the impact on lifespan of this genetic condition so it was interesting that quality of life didn't work here at first we thought maybe there's like some kind of subgroup differences we looked at all kinds of things I just don't think that attribute might have worked but it wasn't important in this study then we looked not just at overall but we looked at the levels of the attributes and I have to say this is the most orderly data set I have ever emerged from and so what we found is that there were significant differences between each of the levels that we looked at except in a couple of cases so when the age of onset was less than a year or one to five there was no significant differences there or when it was the rate of progression was stable or slow I'm sorry I'm not very good with this little pointer and then quality of life available treatments for that was not significant but in all other cases there was statistically significant differences and these preference rates across the different levels that we examined we also looked and we as a kind of a manipulation check we looked at distress levels so we asked people to rate the distress levels of these varying levels and variables that we looked at and so shortened life span was clearly on average there we go much more distressing than a normal life span and so on and so that provided to us kind of a nice check that actually people were perceiving these very attributes and levels that we had defined kind of a priori in a way that we thought was important for their decision making so clearly people want to learn more distressing information that is more likely to occur which was surprising to a group of genetic counselors that I presented this information at last fall they predicted the exact opposite so it was really an interesting discussion we had around that so differences by gender and race we examined these because we were very interested in would we find differences by gender and race based on differences you see in the literature and it really didn't change the main pattern of results that we were finding there was a magnitude of preferences as outlined here but really the main pattern of results was the same across all of these subgroups so compared to mothers fathers cared less about learning information that had a smaller chance of developing or was less likely to decrease lifespan or was characterized with severe physical disability and compared to white participants African American participants cared more about learning information that had a smaller chance of developing was unlikely to affect a child's lifespan or could result in a severe mental disability and I present these but really the main difference is our story but here these are small little differences but the magnitude of results is all the same so our conclusion really is that parents when it's something about a non-treatable childhood disorder parents want to learn that information even if it's distressing and it's highly likely to occur and we believe that is the case based on our qualitative data which shows that parents are very interested in things that have personal utility even if there is no clinical or medical action ability related to those conditions so here we go the conclusions I've already I think gone over most of those with you so all this information is preparatory to the development of a decision aid and so the problem is and this is a problem that's facing most genomic sequencing studies is that when we consent people into studies typical consent forms are cumbersome they're confusing they're long they complain terminology and jargon they're at a very high literacy level they require lengthy individual interactions to complete and they really don't provide knowledge or information about the study and this isn't just I mean this is pervasive in all areas of science not just here but it's especially acute with genomic sequencing studies because it's not an an idea or a methodology that's really accessible to people but we know it will be as precision medicine rolls out as genomic sequencing information becomes more prevalent and available in the society so traditional consent models are going to be problematic when next generation sequencing is more pervasive in research and in practice in population studies and so part of what we're trying to do in the NC NEXAS study and as part of the insight consortium is to look at can we use a decision aid to help ease the burden in the consent process so our approach is the decision aid so it explains genomic information at as the lay level as possible and I have to say as lay level as possible because there's a lot of tension between what I would like to be a lay level and the precision that clinicians really want because they see you know they really believe that people need to know really detailed information to make an informed decision and so this is a ongoing debate and it's one thing I think we're going to find out in the study is what kind of information do people really need to know to make informed decision so we applied communication science strategies and best principles for clear communication, plain language and how literacy as much as we possibly could we used text, graphics and audio to convey challenging concepts and used a little bit of animation of how things move on to the slides that people see as part of the decision aid and we included a value clarification exercise because many studies show that when people engage in a process of values clarification they come to a decision sometimes where they feel comfortable with it and experience less distress now they may not consent to the study and in fact in one of our previous studies on newborn screening related to fragile X we had lower consent rates to screening for fragile X once parents completed a decision aid that was related more to like an informed decision making approach rather than just a typical consenting and we were okay with that so we think it meets participants needs better because it facilitates this informed decision it could make enrollment easier and it just reduces burden all the way around and it will reduce the burden for study staff as well which tend to be in many of these studies genetic counselors who are on the front line consenting people into studies so decision support tools that people haven't used them tend to be evidence based educational approaches that provide a very personalized focus for people to weigh options and outcomes when they're making decisions and so it's typically applied in context when there's no best course right so for some medical treatments and decision aids are typically applied when there's no best medical treatment like what should I do should I get this treatment or that treatment or no treatment and so decision aids are used in a individual or shared decision making context to help people make those decisions and so we thought these could be this framework could be applied in this context because whether people participate in the study really is an individual choice or a dyadic choice you know there's really no really hardcore benefit for them to participate in except maybe they just want to so there's an evidence based literature that supports their use and it really engages people in the process of decision making people have to be more actively engaged rather than just like oh my gosh here's another page of medical terminology where do I sign boom boom boom not even knowing what they've signed and so it really focuses on kind of this deliberative healthcare choice that people can make and in the context of next they would affirm their decisions in the decision aid but then they would go through a process and meet with a genetic counselor before they're actually consented completely into the study so how do we gather parental input for the decision aid so we use these best practices we use the international IPDAS standards which I have to say was something we proposed initially and became actually very challenging to apply in our case because those IPDAS standards were developed with very specific one gene or one kind of treatment in mind we're talking about massive categories of information of uncertain information and so it was very challenging to apply those standards we followed an iterative development process of testing and refining we applied these plain language principles as I mentioned we did user testing with the decision aid once there were we had it developed to test areas of confusion related to content and navigation and we allow people to go at their own pace they can repeat and review information as needed so it's not like there's a time to kind of you know you have 10 minutes to do this and they do it at home or they can do it in the clinic on laptops or tablets that we provide so the decision aid actually contains four sections and this is a screenshot of one of the sections there's traditional newborn screening conditions and similar other conditions that are treatable in childhood then there's a and you know what the NC NEXUS studies about is also included in that section there's non-medically actionable childhood conditions that are described and people provided education about that there's medically actionable adult onset conditions and carrier status so each of these sections is parallel to each other there's some preparatory knowledge and education there's risk rates that are presented people kind of we ask them which way they're leaning to get at their intentions there's values clarification and then they're asked to basically make a decision do you want to learn this type of information about your child and there's also in the very first step in the decision aid there's a tutorial and so this is a screenshot of the tutorial about how you would drag and drop things we talk in this specific examples about newborn screening and genomic sequencing what the study is about as I said reasons for and against and the decision in next steps and so we describe in pretty detailed ways what would happen if people participate in the study when they're in this first step of the decision aid so what we think makes this tool unique is that it's iterative and can be applied applied across multiple platforms so laptops tablets, desktops on some phones but not iPhones but iPads it got to be a little bit cumbersome in terms of this testing but apparently Apple has not agreed to use something on iPhones which makes it very problematic for the use of that it's theory driven in the extent that it accounts for risk communication and other kinds of communication from health communication research it's input from both users and clinicians playing language as much as possible it has the iterative value sorting exercise that's shown here on this screenshot and it has had an iterative user centered design and testing process and I think this is really important because this is the translational part if I was really doing a theory just totally theory driven hypothesis driven study I probably or maybe would have used a different approach but we find it again and again and again with all the digital tools that we're developing that we absolutely have to have people's input on the tool and it makes it better it makes it more accessible to them it's just all around better but I have to say it's challenging sometimes to convince people that this is absolutely the way to go so here are screenshots about condition category description and a risk array so this is medically actionable childhood condition and so what happens is all of these little bars are not on the screen at once so there's narration that happens and the narration almost exactly maps to things that are shown on the screen and these bars come down just one at a time in sync with the narration and so here's an example of a risk array related to newborn screening and it this is the progress bar as it goes around and they can hit going to the next screen so they have to move forward themselves they can't stop and it's they have to to push it forward which is another way to engage people in the process here's difficult this actually when I saw it is actually not the final one but we've tried to use graphics to communicate genomic sequencing information that might be challenging because of the platform that we use we couldn't use animation which of course would be way more useful in this particular context we also use hover overs so anything that has a blue they can click on and then they get a more what I would call a more lay language definition if they would like it here is again as an example where we talk about more about the logistics of the study and then in addition to the value sorting there's questions that we prompt them to consider and then they can put in yes and no yes and no yes and no depending on what they want to provide as a way to either spark discussion between the couple or to have someone who's an individual fillings out think about some of these questions so are you prepared to learn this information that might be medically actionable information about childhood conditions yes or no with the idea and then these answers are populated on the next screen and fed back to them as a way to prompt their awareness engagement and decision making here is a screenshot that's actually not the best screenshot but it shows a summary of the values clarification exercises so reasons for and a reasons against and what happens is they sort through values and then a summary is shown to them as a way to summarize for them and to think about what is important to them is to either get the sequencing or to choose certain kinds of information so this is how they record their decisions and as I said prior to this prior to the values sorting exercise we have a same slider scale so this arrow measures will can slide across this bar and it actually has numbers that show when it slides and so even those either really categorical decisions that people are making we did this as a way to see if we could somehow capture finer grained intentions and decisions like yes I definitely want to do that I'm going to put it all the way over here on this side or yeah I kind of want it over here and so we're going to look at kind of pre-post values clarification as a way to see do people's intentions change with their decision so the next step is the NC NEXUS randomized trial where we'll have 400 parents who participate and use the decision aid as well as work with a genetic counselor to make these decisions so all consenting parents will be able to make decisions about newborn screening conditions that others that are treatable in childhood and then about two thirds we did an uneven randomization because this is a pilot study and will be randomly assigned to additional decision categories that I've talked about so carrier status non medically actionable and adult actionable and they can choose one none or all of those so they don't have to choose any like permutation of those categories of decisions to be a part of the study we're looking at decision confidence conflict distress and other outcomes that are monitored over very short follow-up period and again we're hoping that we can get more funding to look at people longer over time and so this will really allow us to evaluate if a decision aid helps support informed decision making in this context I mean it could be a useful tool not only to support parents but genetic counselors and others who are going to be involved in these large population-based studies as we move forward so I'm going to end there and thank you for your attention I'm happy to answer any questions that people have yes no so the question was will there be people who will use the decision aid and not have access to a genetic counselor which I think is a good decision that would be in some ways the full design right to look at that comparison and we thought for ethical reasons we don't know the effectiveness of the decision aid at this point we don't know the needs of parents so that we thought we wouldn't do that that could be a really interesting next step is now if we have some we know this helps what happens to people consent without the access to that interpersonal communication do they have that same level of confidence maybe or informed choice making that we may learn about but that's a really really good question but we're not in this study for mostly ethical reasons yes and so it's a pretty complicated design and so really it's basically four months overall but when you there's a really long lag for some of the return of these results for the processing of the information so it's actually probably a little bit longer this is the goal I don't know if we'll be able to achieve that goal I mean there's a lot of information this to me is a lot of people to be processing that kind of information on so we will see how long that lag tends to be but that's the standard that we're trying to get at and it's mostly we're backing up against now we're in year three so we're also backing up against the end of the five year grant period yes exactly right so that's why we decided that everyone should be able to have access to and I should make it clear everyone who has a newborn in this study will get traditional newborn screening and then there's lots of methodological issues that they're interested in examining when they compare traditional newborn screening with the next generation sequencing that will be done that's why we wanted everyone to have access to that decision-making category almost like it was a traditional newborn screening kind of thing everyone has access to making decisions about medically actionable conditions so that's why we wanted to be able to have access to the child if I understand your question correctly now people could get to the point where they opt out so at any point in this study people can drop out they can even do the sequencing which will be done by a swab in the baby's mouth or the child's mouth I think so that's both cases with the swab but they can even have the sequencing done and choose not to learn it and opt out of the study but we wanted it to be kind of like newborn screening might be which is everyone has that option but we couldn't really force them to have that I doubt the FDA would allow that and I'm sure our IRB would not allow that either but you're right it's it's really interesting the kinds of debates that we have in the Insight Consortium about the public health significance of the application of this technology to newborn screening because it brings up so many issues about opting in and opting out and so we're doing some other work that's separate from this looking at elective panels of genomic sequencing but elective panels that would supplement newborn screening information and some of you I all know Holly PA and Holly and I are working with Don Bailey on that project which is basically to have a Tier 2 screening system that we're hoping to implement in North Carolina other questions great thank you so much I appreciate it and happy to talk with anyone individually thanks so much


Hello and welcome to the session. In this session we are going to discuss the following question and the question says that write 15 into cos of minus 56.3 degrees plus j sin of minus 56.3 degrees the whole in j operator form. We know that a plus jb is equal to r into cos theta plus j sin theta in polar form where a is equal to r cos theta and b is equal to r sin theta. With this key idea let us proceed with the solution. According to the question we have to convert 15 cos minus 56.3 degrees plus j sin minus 56.3 degrees the whole in j operator form that is we have to convert it in a plus jb form. We know a plus jb is equal to r into cos theta plus j sin theta in polar form so on comparing 15 into cos of minus 56.3 degrees plus j sin minus 56.3 degrees the whole with r into cos theta plus j sin theta the whole we get r is equal to 15 and theta is equal to minus 56.3 degrees. Now since a is equal to r cos theta and b is equal to r sin theta therefore on putting the values of r and theta we get a is equal to 15 cos minus 56.3 degrees and b is equal to 15 sin minus 56.3 degrees as cos of minus theta is equal to cos theta this implies a is equal to 15 cos 56.3 degrees this implies a is approximately equal to 8.32 this value can be calculated by using a calculator as sin of minus theta is equal to minus sin theta this implies b is equal to minus 15 sin of 56.3 degrees this implies that b is approximately equal to minus 12.5 which can be calculated using a calculator so a plus jb is equal to 8.32 minus j into 12.5 this is the required form with this we complete our session hope you enjoyed the session


Hello everybody, welcome back to another episode of Anabaptist Perspectives. I'm here in Lancaster with Randall and you're currently in the States, but you've been serving overseas. So tell us a little bit about yourself. Where are you serving and what does it look like on a typical day there? Great question. So first of all, my name is Randall Graber and married to Althea here from Lancaster County. We have one child Alexander who was just born December 7th actually, so he's about six months old and we serve in Lesvos, Greece with Christian Aid Ministries there. The program is the Refugee Discipleship Center. It's kind of the name of the program. We have been there about two and a half years now, since spring of 2018. So it's basically home at this point. Yeah, for us, for us it is mostly home. We feel at home there. We really enjoy the work, enjoy the people, enjoy the culture, beautiful place as well. That's a bonus. We didn't go to Greece to you know go enjoy the scenery and the beautiful islands, but it is a bonus. Yeah, sure.  You know, how does your week start? Every day is often different, but for myself, my main responsibility with the work there is just kind of as the field administrator. You also have to understand there's only two families there, so it's pretty small. So we do a lot of overlapping back and forth our responsibilities. But mostly I would be responsible for the accounting, the finances, the office work, any buildings we rent or own or any vehicles we have, maintenance, logistical stuff like that, and also program management and kind of overseeing, but for the most part we just have the one program there, which Nathaniel Yoder who is currently there manages that. So you mentioned refugees, but we're talking about Greece here. So why are the refugees in Greece? Like what's the story that caused them to arrive there? In every situation, the circumstances they change, they're different. For the most part refugees are fleeing war or poverty, governmental issues, oppression. Basically you can kind of often tell what they're fleeing from depending which country they're from. We have refugees from all over, from Africa. Most of them would be from the Middle East and it also depends where at on which island in Greece different islands have different majority groups. The island we're on, Lesbos, is the majority would be from Afghanistan and Iran. Afghanistan. So how do they get all the way from Afghanistan to Greece? Most of them will either bring bus or walking across the borders. That's a long walk. And most of the stories, a lot of people I know that have told me their stories are often fleeing, especially the borders. The borders are very critical. They can normally bring like buses or public transportation up to borders and then when it comes to actually crossing the border, they have to do that dark after night, fleeing gunfire. There's a lot of crazy stories you hear from the people crossing the borders. But they would have to cross quite a few borders and often they end up staying in Turkey as well for a while for several years before they eventually make it to Lesbos there. Wow. So like on a map, where are we at here? So you have Greece, I know Turkey's right there, Mediterranean Sea, you're on an island. So where you fit in? Yes, so Lesbos is in a very strategic location actually. It's like it's a natural bottleneck. It always has been a migration bottleneck, but it's just off the coast of Turkey. The closest point is about five, six miles from Turkey. That's where the majority of the refugees make it across there on their rubber rafts. They also come along the whole western eastern side of the island there against Turkey. Some places 12, 15 miles. As far as Lesbos, in comparison to the rest of Europe, if you look at a map, you'd think it'd be Turkey. It's so close to Turkey. So the question would be then, why is serving Greece? Like aren't there lots of other places along, I guess you could say the refugee trail where these people are coming that might be more needy. Why did you choose Greece? There's kind of two questions there. Why serving Greece and why did I serve in Greece? Why did I choose to serve in Greece? You know as with many other things in life, there's not only one place where the need is exactly. So we personally felt called to the work there through several events in our life that led us there and especially Dean Taylor's very instrumental in getting us involved there. So I believe mutual friend there. Yeah, we've interviewed him a number of times. Yeah, yeah, but it is a very intense place to work. It's a very good place to go at least for a short amount of time. I would recommend you to go, anyone to go. The experience you get is really life-changing for a lot of people. Just seeing these people, what they're fleeing from, and the situation that they're in, even in Lesvos, which is Europe, the situation is very bad as well. And so it really, it really, it pulls your heart once you get there, you get involved, you start to know people. But there is many other places as well that have needs. So I'm not saying Greece is the only place. There's needs everywhere. In mainland Greece, there's lots of refugees, lots of needs on through Europe. So if I'm understanding it right, you know, Lesvos is a pretty small island, so it's more of a transit, correct? Refugees are coming, but after a while we get full. So they, at some point, hopefully get to mainland Greece or the rest of Europe. Yes, that is true. The past couple years, the new arrivals have been trending down, generally speaking. The new arrivals have been coming down, but the people leaving the island and the people leaving Greece have decreased. In a lot of ways, the refugees are kind of stuck there, unfortunately. And especially the political situation. It seems like the political situation has swung a little bit more right-wing across the whole EU, really. Anymore, it makes the news if one country accepts 20 refugees from Greece, it makes the national headlines. And while it was back in 2015, you know, thousands and even millions of refugees were being accepted into the other countries. So that has also played into the dynamics, why there's still so many refugees there in Greece. And the numbers on Lesvos Island are as high or higher than they've ever been. Wow, so they're like just crunching them in because it's not, so you still have people coming, maybe less than usual, but they're still coming, but there's not as many going to their actual destination country. Exactly, there is currently, as we speak, there in Moria Camp. I don't know the official number, but often most people I'm hearing say around 20,000. And then there's a few other smaller refugee camps on the island as well. So put it in perspective, Lesvos Island, they say has 90,000 Greek people on it. And Midalini, the capital, has 30,000. And so in one refugee camp, Moria Camp, there's 20,000 refugees to put it in perspective. Well, that would be really taxing on the rest, like the local population. It is. Well, so that kind of transitions to the next point then too, because how, so you're there to serve these people, these refugees in a desperate situation, they need help, granted. But how do we do that without neglecting the local populace as well, the Grecian people? You know, that is an excellent question, the one that we grapple with daily or weekly, they're on the ground. I think the biggest thing you can do is just have that mindset as well, that we're here to help the locals as well. And they are the host, they are the host people actually. You are living in their houses, their property, their land. Over the years, they initially were very welcoming, very friendly, but the last couple of years, they have been actually fairly hostile towards the refugees, towards foreigners. So we're always looking for creative ways to help them out as well. In fact, the last couple of weeks, because of the coronavirus situation, we actually converted our refugee center into a mask factory. Wow. And we were making masks for the Greek people, the police, the firefighters. So that was kind of a way that we could give out. I feel like we made more connections and built more bridges, probably in the last two months than we did the year prior, just during refugee ministry, as far as with the local people. So that has been a big blessing. So it's like there's a balance there.  And I mean, it makes sense. If you have a refugee camp that's almost as big as your entire capital city, that would be a little unnerving, I would think. Yeah, there's a lot of fear. They have a lot of fear, and there's a lot of crime as well. I mean, honestly, without Jesus in a person's heart, this is the result you have. You have fear. And these issues, in fact, just a couple of weeks ago, a Greek person shot a refugee with a shotgun in the back.  But it was pretty serious. But it was there again. It was because these refugees had stolen, I think, four or five times previously off of this guy's property.  And so the police force is just not very adequate to manage the crime rates, especially after dark. And in fact, our refugee center there, we've probably had six to eight break-ins over a course of several months. Like, are we talking, you know, they're having difficulty getting access to even just the most basic things, you know, food, shelter, clothes, that type of thing. And that's causing these levels of desperation. That's a good question. I wouldn't say the level of desperation really is any worse than it was previously. But the level of life that the refugees get is very, very low. You'd think Europe, they would at least have decent accommodations, but they really don't. Moria Camp is, I think it's about 12, 15 acres. And there's 20,000 people on it. So it's very densely populated. And about three-fourths of them live in tents, I would guess. A lot of these are also just structures built from pallets. They'll put tarps over them. The bathroom facilities, I think they say it's several hundred refugees for every toilet. So the sanitary conditions are very, very poor. They do get meals as far as food. They do provide food for them. They do get provided basic food and basic shelter, but the standard is very low, unfortunately. But looking beyond, I think one of our biggest visions for our work there is not so much the humanitarian aid aspect as they do have basics provided. The standard is very, very low, and it's unfortunate. And we do offer, we do try to, when there's special situations, special needs to help out in the humanitarian aid stand or in that part of it. But our main focus is more for their spiritual health, their well-being. It's such an opportunity. When people get everything taken away from them, they fled home. They fled everything. They have nothing left. Their hearts are left asking questions. Their hearts are very open. And it has been a tremendous opportunity for God's Word there. And people are very open. They're thirsty. Really, nowhere else have I seen it with Muslim people, the hunger and thirst. So that's kind of, it feels like what we're trying to provide and kind of to focus on as it feels like that is really the most eternal impact we can have with these refugees. It really works the best when you can do both, not really focusing on one or the other. But if they see that you genuinely care for them, you're helping them, and you're also showing them the salvation message, Jesus' teachings, they are very, a lot more receptive. And the love that radiates from your life, they see it. So like those that are watching this, what's some way that they can get involved if they want to help? There are several organizations. If you want to get involved in Greece, there are several organizations that bring volunteers over. We do more long-term oriented stuff. We don't do short-term volunteers. One of the biggest ways you can get involved is pray. There's many ways to be involved, really. So with your time there in Greece, what is one thing you've learned from your refugee friends? The first thing that comes to my mind that I have learned is being content. It's interesting. It's maybe not the first thing that would come to your mind when you think of difficult situations and hardly the bare necessities of life are provided, but yet I have seen it time and time again in these refugees' lives, especially the Christian refugees. They have so little, but yet they're content. They're happy with where they are. It has really challenged me, as an American, with all the blessings we have as Americans, to be content and to use our material blessings. There's many blessings that come with being American. Using these to assist these refugees, to benefit them in ways that we can, and most of all benefiting God's kingdom, building His kingdom. But that is probably one of the biggest things for me, just being content with life. So following that up then, what is one story of a refugee say that you find is fairly typical of what these people have been through? That kind of takes all we've talked about, sums it up into one package. What's the story you could share with us to close this out? I have many stories running through my head and it feels like the names, the details kind of all blur together. I'm not a very detailed person, so I'll do my best at recollecting the details. I do have one man in mind, actually, and I'll change his name, we'll call him Ali. This is not his real name. But he was from Iran in his 30s, and he had gone to school, went to college. He was a professional engineer. So he had a very well-paying job, and he was very respected. His situation, the political pressures there in Iran are very difficult. If you don't really agree with what the government wants you to support and be a part of, you'll end up in jail. You can very easily. So there's a lot of political refugees. He would do what I would consider a political refugee just because of the political situation there. So he just decided it was better off for him and his future to flee. He entrusted all of his money, his bank accounts to one of his friends. He said, hey, when I get to Greece or wherever I'm going to Europe, you have power of attorney and you can send it to me. And he was very well to do. But after quite a few years, I don't remember exactly how long he made it to Turkey. He met a friend there who brought him to church. That's kind of where he was first introduced to Christianity, and it kind of pricked his interest a little bit. He didn't give his life to Christ then.  Oh. And so he was dealing with a lot of bitterness. What do you do? He can't go back. He needed to go forward. So he dealt with a lot of difficult things in his life. Through the situation, he actually kind of discovered the freedom of forgiveness. He had never really been introduced to Christianity and what Jesus teaches about forgiveness, he was kind of introduced to it. He discovered the freedom of forgiveness because he was so bitter for so long. He's like, you know, I have to give it up. And then when he came to Lesbos, Greece, he came to the facility there, to the discipleship center. He spoke some English as well, so we got to know him very well. He eventually kept coming, built a relationship, was coming to church, coming to class, and he gave his life to Christ. We baptized him there on Lesbos, and he's still there. And a very active member in the church and the group there. And it was just really special, the part of his story where he discovered forgiveness. And then when he became a Christian, he was like, oh, this makes so much sense because here's Jesus in the Bible talking about forgiveness. And he had never heard these teachings before, so he really connected with him. It was really interesting. There's many refugees, many other stories fleeing a lot of hardships. A lot of refugees flee war-torn areas, family members, killed, blown up, a lot of difficulties, especially Afghanistan and Syria and Iraq. We don't deal as much with the Syrian and Iraqi refugees. There's not a whole lot of them on Lesbos. So, lots of needs, a lot of opportunities, a lot of things to pray about, I guess. Wow. Wow. Well, thanks so much for taking the time to share. I really appreciate this and blessings in your work. Absolutely, thank you, Regan. It was a pleasure. Thank you.


Why empaths attract narcissists? Empaths are receptive. They are willing to consider or accept new suggestions and ideas. They can be present with people. They are aware of their own emotional state. They can react quickly and positively to other people's emotional states. They are deeply tuned in to the feelings of people around them. They are like emotional sponges. They have a lot of empathy. They have the ability to understand the experiences and feelings of other people outside of their own perspective. They can sense and feel other people's emotions as if they're part of their own experience. All of these qualities are good. But there is a dark side to this. When the empath is around a narcissist they will get sucked into the narcissist's emotional world. They will sacrifice their own feelings and needs to please this unpleasable person until they experience anxiety and distress. Empaths also have difficulty setting boundaries of people because they have a lot of empathy. They feel bad for other people which often prevents them from staying away. Empathy is a good quality but when the empath is surrendering everything they have to someone who just takes more and more and doesn't give anything a return it puts the empath in a very dangerous situation. It puts the empath at risk of failure or loss. Empathy is a good quality. It is an essential quality to having a healthy relationship but empaths also tend to be magnets to narcissists. Narcissists are attracted to empaths because they care. Empaths feel concern and interest for people. They want to look after and provide for the needs of other people and they are willing to give more and more. While the narcissist takes more and more the empath lets the narcissist get away with everything they do and never questions or confronts them they keep accommodating. They keep trying to fit in with the narcissist's wishes or needs which is the perfect situation for a narcissist. Empaths don't usually consider that some people are motivated purely by self-interest so they miss all the red flags. Instead they continue to show pity and concern. For the narcissist's display of misfortune or suffering empaths believe that a relationship is supposed to be about giving. They believe that it is supposed to be about being present with another person and in a normal situation they would be right but you cannot do that with narcissists. In some past relationships the empath may have had experiences where their empathy worked very well but when you're dealing with a narcissist they will only take advantage of you. They will only treat you unfairly for their own benefit but regardless of what the narcissist does the empath will give them a chance of the chance they will try to understand the narcissist they will attempt to explain or justify the narcissist's behavior or attitude with logical reasons they will try to be compassionate towards them they will blame themselves or some other situation for the way in which the narcissist is behaving they will try to heal the narcissist because they just can't accept that some people cannot be healed with love and they don't like the idea of abandoning people when a narcissist gets involved with an empath they quickly assume that they can do whatever they want because the empath just lets them get away with it until the narcissist becomes a spoiled toddler the narcissist will then test every limit and restriction that the empath has and this will hurt the empath it might even make them angry or frustrated but they will continue to give the narcissist a chance of the chance because they believe that everyone deserves to be given a chance they believe that everyone deserves to be loved the red flags were there right from the beginning but empaths overlook red flags because they're more focused on emotional connection they're more focused on attending to the narcissist's feelings and needs but there is a point where the empath starts to become aware of the danger and that is after they have children before they had children they were only justifying things from their own point of view of what was happening to them but when the empath sees how the narcissist's behavior is affecting their child it causes the empath anxiety and distress but it can also make the situation more complicated because once you have been around the narcissist for long periods of time it can exhaust your empathy until you have nothing more to offer because you have no empathy coming to you but yet someone who is in need of special care and support who you empathize with is experiencing distress empaths are not only narcissist's magnets but they also have great difficulty getting out of toxic relationships because they feel bad for people and they hold themselves responsible for other people's decisions or situations instead of recognizing everything the narcissist did to them they will often examine their own behavior they will assume that they should have done more for the narcissist the more time an empath spends with a narcissist they can become codependent they give everything they have until they experience extreme physical and mental exhaustion until they have no energy left empaths stay in these relationships with narcissists for long periods of time because they don't have the knowledge and even when they do have that knowledge they don't want to accept it it takes a lot of work to make an empath realize what they're actually dealing with but when they realize and accept it some of them will still choose to stay they have difficulty getting out before the narcissist causes more damage or losses because they think that they can fix things they think that they can make things right even though the narcissist is the only one who is benefiting from the relationship the narcissist will manipulate the empath into thinking that it's not good enough no matter what the empath does for the narcissist it will always be minimized or dismissed the narcissist will not acknowledge the empath's efforts they will only play it down and focus on real or imagined difficulties or problems for this reason the empath can spend years of their life in this relationship with no other purpose other than being the narcissist ATM or that emotional punching bag while still being compassionate towards the narcissist while still hoping that they can change some empaths do eventually realize that they need to leave the relationship which is due to a difficult financial situation or serious health problems as a result of the relationship but regardless of everything the empath has done for the narcissist the narcissist will see it as though the empath is abandoning them they will see it as though the empath is selfish narcissism is characterized by an inability to self reflect so the narcissist never looks at themselves to see their own behaviors instead they project their traits onto the empath they also believe that the empath has a duty to serve them they believe that the empath exists to meet their needs for this reason even when the empath does leave the relationship it doesn't end like a normal breakup the narcissist will find themselves holding on for dear life the empath is the sustenance that keeps the narcissist together the empath is the source of the narcissist's strength the empath maintains the narcissist's life and existence which is why it is often so difficult for an empath to ever be free where there is an empath there will always be someone who is dependent on them because empaths are like emotional sponges they're very given and they don't expect much in return which makes them very attractive to narcissists empathy is a good quality in relationships but every relationship should be reciprocal there should be an equal exchange it is not your responsibility to save the narcissist you have the right to set boundaries you have the right to protect yourself when your empathy is restored to its former condition you will find that it can be an amazing thing you can then give empathy to people who give it back to you and you should especially give empathy to yourself thank you for watching I hope this video resonates with you please like, comment, share and subscribe if you were like a denate my paper link is in the video description coaching inquiries you can email me at coaching at narksurviver.uk thank you for watching and I'll talk to you soon


For some reason teenagers right now are doing this tide pod challenge essentially because the tide pods look like candy Well, I have something for you Because there's a rock that looks it's like orange yellow well salt really but Rocks are mostly silicone salt anyways. Let's try to get the color Just right. I shouldn't touch that and of course I've already touched that So it's a little cancer on the fingers anyways this stuff is Well geologists have known it as lopazite chemists especially the guys who like the IUPAC naming are gonna know it as potassium dichromate Looks like I need a little bit more of it woodworkers tend to use the older name dichromate of potash Or bicromate of potash. They're basically the same thing I'm going to go pour the Foam off these One of them has a little bit more. Oh, and I say I guess one makes a better latte. There we go for the most part These are now unrecognizable from each other and Yeah, I'm not really sure we're gonna go about this now because I sort of sort of forgot Sort of forgot which one was which Yeah, I basically have the same glass here and I looks like I've poured off about the same height It's kind of hoping the foam would help me out but there's actually just a bunch of pieces of sawdust in this one and It is a few larger chunks in this one, but I'm not really sure which would have came off in this In what order? Boy, that's looking really good though I mean look at that Russians think they're badass for doing the whole Russian roulette thing with their odds being one on six It's called.  Ooh, that's that that that looks appealing because that Potassium dichromate is immensely toxic to the point of making lead look like child's play In case by some chance you were living under a rock or something the tide pod challenge is this idiotic thing that some people have been doing Recently, I'm a little late to the party on covering it But it was for setting up what I did before as well as doing a little bit of background research and on the stuff the tide pods which you know our White with the little orange and blue capsules also on them there's this Well, at least to me was an obvious joke About how they look like candy.    Just uh If it kills them just let it kill them. That's the darwin award and I I mostly agree with that But there's some stuff I want to touch on you have some people who are largely blaming the parents and That one is tricky uh Because I can see how it would be pretty quick to Assume that the parents didn't really teach the kids about what uh poisons are and you know, not to put them in your mouth Uh But then the fact that a lot of these people have made it to say 16 to 19 years old Without having ingested anything that's killed them yet tells me that they Probably were taught that and that this is caving to social pressures But then you know did the did the parents then do a good enough job teaching the kids not to cave to social pressures And can you even actually accomplish that?  No, you're gonna do that there um What I was hoping to bring attention to is this absurd thing in marketing where We make things brightly colored even though tons of toxic things Throughout history and even in modern times are brightly colored naturally uh Well, I'm not really from these areas. I I'm not gonna comment on a huge amount because I don't want to be spreading misinformation, but When you look into like more tropical regions, it's very well Very well established that like frogs and even a lot of plants that are poisonous have really bright colors as this sort of warning sign they also happen to be you know poisonous or toxic but that that They have really bright colors Of course, that's obviously not a universal thing because when you look at say like desert regions But once with uh very poisonous snakes, you don't you don't actually see that um and then once you get into like Really organic stuff.   I guess I should also explain, uh Uh There's clearly people who don't get it both young people who are actually falling for these Obvious jokes, but also older people who don't understand the jokes to begin with and uh pretty apparent tide Doesn't understand this at all There's this odd thing about my generation where the humor Largely comes from two two main things that You don't really see uh too much with others and that's um The combination of two things that basically have nothing to do with each other So laundry detergent and food As well as presenting one thing With such absurdity that it's obviously a joke, but it's the absurdity to the whole thing that is the joke That one the the absurd humor you can see kind of well, I mean, they're both absurd humor But the the one taken to an extreme you can kind of see with some medians of the previous generation as well but uh It must have to do with something from we were raised up when we when we were raised I have some ideas about it, but i'm not i'm not too certain yet but you know presents in such absurdities like Loving things that are absolutely terrible um You know a rather famous youtuber now uh John Tron basically did tons of that where he was looking doing Reviews of sorts Obvious bootleg games How how terrible they were was funny Uh, well then you see other other absurd combinations of things like the Ugandan knuckles which is terrible, but it's the um It's how out of place and absurd it is that what makes it funny But you see all sorts of these things where you have two things that are combined that are really not supposed to be and um the tide pods and food was exactly that The joke was that they look like candy so start presenting them as food because isn't it absurd how they look like candy I don't know how Anyone could have thought that oh, hey that actually seems like a good idea, but It happened apparently well the thing why I say tide really doesn't didn't understand the um They put on an ad with uh some big football guy About how uh These are tide pods. These are for doing your laundry.  These are for eating not doing laundry You got to see this kind of shit coming You've got to but Now that then did it took off it was basically the Streisand effect and um Just sort of amazes me how you can have these absolutely massive companies Rise up without really having a good grasp of human behavior, which is interesting because marketing is all about pandering to human behavior, but they um Generational differences, I guess they they failed hardcore Oh one thing I'd like to address just because there's some certain people saying this the um The locking up of tide pods. That's not in response to this that happened for well before For whatever reason Laundry detergent, especially the tide pods are a high theft item I don't know why But they were locked up well before this just because it's a high theft item I don't get it


The exportation they endure robs them and their children of a safe future. Migrants must be able to find safe, decent work, free of degradation and fear. Their journey should be voluntary, and their work should benefit their families, not their captors. Remember, we are all migrants in the end.