Explore the captivating world of genetic counseling with Laura Forrest, a respected academic and associate genetic counsellor all the way from Melbourne, Australia. Together, we untangle the intricacies of qualitative research in clinical genetics and the fascinating journey through her PhD in familial communications. We also delve deep into her publications and discuss the promising Genetic Counseling Outcome Scale. Along the way, enjoy lighter moments as Laura shares the story of her new puppy Alfie and his toilet training tale. Furthermore, we underscore the transformative power of feedback on refining our work.
In the second half, we navigate the significance of mixed-methods research in shaping a robust academic and research career. Through an enriching conversation, we provide insight into the multi-method studies, their applications, and the merits of qualitative and quantitative methods. Laura also opens up about her experiences of co-authoring papers with her husband. Shifting gears, we discuss the Genetic Counseling Outcome Scale (G-COS), an innovative tool designed to measure the empowerment outcomes of genetic counseling. Discover the five constructs of the G-COS and learn how it can amplify the effectiveness of research and practice. Tune in to this enlightening episode and stay informed!
Explore the captivating world of genetic counseling with Laura Forrest, a respected academic and associate genetic counsellor all the way from Melbourne, Australia. Together, we untangle the intricacies of qualitative research in clinical genetics and the fascinating journey through her PhD in familial communications. We also delve deep into her publications and discuss the promising Genetic Counseling Outcome Scale. Along the way, enjoy lighter moments as Laura shares the story of her new puppy Alfie and his toilet training tale. Furthermore, we underscore the transformative power of feedback on refining our work.
In the second half, we navigate the significance of mixed-methods research in shaping a robust academic and research career. Through an enriching conversation, we provide insight into the multi-method studies, their applications, and the merits of qualitative and quantitative methods. Laura also opens up about her experiences of co-authoring papers with her husband. Shifting gears, we discuss the Genetic Counseling Outcome Scale (G-COS), an innovative tool designed to measure the empowerment outcomes of genetic counseling. Discover the five constructs of the G-COS and learn how it can amplify the effectiveness of research and practice. Tune in to this enlightening episode and stay informed!
Hello and welcome to a new season of the Mystifying Genetics. I'm your host, matt Burgess. I'm a genetic counsellor living and working in the United States. However, i am from Australia where I trained.
Matt Burgess:This is season three of th ystifying Genetics and I just wanted to say a big thank you to all of the listeners so far. I have really enjoyed receiving your feedback and your comments and I hope that you enjoy this new season, and I'd like to say a big thank you to our sponsors for this episode, track Gene. I'd like to thank my producer, omi. I think he does a fabulous job at making this podcast sound as good as it does, so thank you very much. So in this episode of the Mystifying Genetics with Laura Forrest, i speak to Laura, who is an academic and an associate genetic counsellor living in Melbourne, australia. We talk about her academic interests and her PhD, which was in familial communications. We also speak about some of her publications, the genetic counselling outcome scale, and really dig deep, or a little bit deeper, into qualitative research in clinical genetics. Dr Laura Forrest, welcome to the podcast.
Dr Laura Forrest:Thank you very much, matthew Burgess.
Matt Burgess:It's very exciting to have you. This is episode one of season three, so yeah, very excited.
Dr Laura Forrest:Thank you, i'm absolutely delighted to be talking to you this morning.
Matt Burgess:So first things first. you have a new dog, So tell us all about your puppy.
Dr Laura Forrest:We do have a new dog. His name is Alfie and he is a black Labrador and he's currently about 13 and a half weeks old, so he's still very little. He's very swish and the kids absolutely adore him, so he's fitting right into my family. But I am going to have to have the rug near the front door deep cleaned because he seems to have taken a liking to using the rug as a toilet spot. But we are on it in terms of getting him outside, so he is almost toilet trained.
Matt Burgess:Oh well, it sounds like he's sort of going in the right direction, so that's good.
Dr Laura Forrest:He's trying to get there, yeah.
Matt Burgess:Oh well, i hope that my beautiful doggy Banjo will get to play with Alfie in the next few months.
Dr Laura Forrest:Yeah, that would be really exciting.
Matt Burgess:Yeah, now as you know, i'm doing a little bit of study at the moment and I just started at my thesis and before I started I met with my supervisor and she is actually a therapist herself and she sort of went to great lengths to talk about how, you know, giving feedback and it's not personal and you know she's trying to make, like my work better and you know, don't think of it as criticism and I thought yeah yeah, that all sounds fine.
Matt Burgess:And then the first time I got work back I was like who is this woman Like? I was like really cranky and was like, ah, so you have a PhD in genetic counseling. Is that how you felt when you received feedback from your supervisors?
Dr Laura Forrest:Absolutely. I had four supervisors for my PhD and each of them was a really multi-disciplinary team And so each of them brought something different to the supervision and therefore gave me different styles of feedback when they looked at my work And I took different things from each of their feedback. But there's always that initial kind of when you, you know, say it's an electronic document, you open it up and you see all of the track changes or the comments and having to kind of take a beat, take a moment and separate yourself from what they've given you. And I think what I learned from that experience and also over the years because obviously since then I've written lots of different papers and you get peer reviewed for your publications is that it's often not personal and the feedback that people have given you is only going to make your work better.
Dr Laura Forrest:And the other thing that I always try and keep in mind and it's almost about maintaining that positive regard for your supervisors in your mind and not like and not just thinking oh my God, who are you Is that they've given is the more feedback they've given you. It means the more time they've taken with your work, so if they've absolutely gone to town on a piece of work of yours. It actually means they've spent a lot of their own time and effort And it means they're really invested in you. What I find disappointing is when people read my work now and get back to me with really superficial, like maybe grammatical changes or very few, because it means you know they've kind of just skim, read it and gone. Yeah, yeah, this is fine. Yeah, you don't get that opportunity for improvement and for learning through that process.
Matt Burgess:Oh, it sounds like you've come full circle.
Dr Laura Forrest:Probably it's been many years now.
Matt Burgess:So now you supervise PhD students, do you feel like you're able to be that empathic kind of supervisor and give good feedback in a loving way, and do they look at you with this sort of positive regard?
Dr Laura Forrest:I hope so. I hope so. I suppose what's in my mind right now is that I have different relationships with each of my PhD students. It depends who they are and where they're at in their lives and what they bring to their PhD, and so some of them they all need different things from me as a supervisor, and the same goes when I'm looking at their work. They you know, some of them need more help with general structure, whereas others might you might need a more critical lens in terms of what exactly they're writing about.
Dr Laura Forrest:I've been very lucky, i have to say. The students that I've supervised so far to date produced very high quality work, and so you're often providing feedback more about have you thought about it from this perspective rather than, you know, having to correct grammar or spelling or things like that. But my comments are probably and I think this is something that we all do when we write, whether you write an email or whether you're writing on writing feedback for someone's work There's two things that impact how you write for someone or a comment directed to someone.
Dr Laura Forrest:It depends on your relationship with them, but it also depends on your own frame of mind, like if I'm, if I'm commenting on a student's work later at night, my comments might be shorter and sharper because I'm tired, whereas if I'm doing it fresh, i've probably got more reserve, more more kind of emotional empathy to to, to make sure, when I word things to them, that I can do it in a kinder, gentler way. I often post comments as questions do you think that? or how about considering this rather than do it this way? Because you want that kind of dialogue? Yeah, and sometimes I'd like you know, if I've got a really well established relationship with a student, i'll often write, like you know, i'll be a bit more kind of jokey, you know, well, that was a bit shit. Like, let's try and let's try and make that Like. I know you, i know you can do better than this.
Matt Burgess:Okay. So you sort of had the opportunity to build that rapport and you've got that relationship there.
Dr Laura Forrest:Yeah, but when you first start out, absolutely And like if I was commenting on, like if I'm involved in a manuscript with co-authors who I don't know very well, i would keep my tone very polite and try and provide good quality, rigorous feedback. That's not but it's factual And yeah, and to try and make sure there's that separation between it's clear, i'm not talking about the person, i'm talking about the piece of work.
Matt Burgess:Excellent. Okay, so your PhD is in genetic counseling and I think it's about familial communication. Is that what it was in?
Dr Laura Forrest:Yes, yeah, so I did my PhD way back when I started in 2005 and I had my thesis in 2009 and I was based at the Murdoch Children's Research Institute, enrolled through the University of Melbourne, and my supervision team wanted to do a study in family communication to look at how or whether at-risk relatives were informed that there was a genetic condition in the family, because I was sitting down at the Murdoch Children's the types of genetic conditions that I included. The families had different types of genetic conditions, most of which were pediatric. I did a mixed methods study over the course of three and a bit years and that included a series of interviews with parents who had children with different genetic conditions. I looked at how genetic health professionals practice in terms of what happens in a consult. Do they, how, do they support and encourage families to communicate? That survey was pretty novel at the time because it was online and back in the mid-2000s we didn't do a lot of that. But it was important for the survey to be online because I sent it out internationally and I got a pretty good representation internationally from different genetic health professionals and it was really interesting to see the practice. But the way we structured the survey was to compare four different conditions to look at whether their practice is different depending on the mode of inheritance or the severity of the condition, and then we also looked at international guidelines and position papers to see what our professional societies recommend us to do And all of these pieces of work.
Dr Laura Forrest:I'm pretty sure there was some other component, but it was a while ago. I published all of these different sub-studies that formed the whole within my thesis. Yeah, so it's been quite some time. Family communication is kind of one of those topics that I feel very comfortable within because my PhD was in that topic, but I have to admit I haven't done a lot of research since then in that area. I have just become involved as a collaborator for an international study that's actually running from the University of South Florida and Marlia Dean Krusell is leading that study with a PhD student, and they're also doing an international online survey study asking people with hereditary conditions to fill out a survey about what their motivations are to communicate, and that looks like it's going to be really interesting. So we're just trying to get that off the ground right now at the Peter McCallum so that we can recruit our patient cohort for them.
Matt Burgess:Wow, well, that sounds cool. And what do you think of doing a mixed method study? Like I think I just assumed that your PhD was qualitative, but do you think that it's sort of the best of both worlds, or like, is it easier to sort of just do one or the other? no-transcript.
Dr Laura Forrest:I think as a PhD student, you have an amazing opportunity to train for a future academic career and to train as a researcher Sorry about the noise outside the room And so I think the more different types of research that you can do within your PhD, the better equipped you are for your future research career, if that's what you choose to do.
Dr Laura Forrest:So I think mixed methods or multi-method studies are a really great idea, because it gives you the opportunity to learn all of those different skills.
Dr Laura Forrest:So an example for actually all of my students one of the ones that is currently the most contact with at the moment has just completed a qualitative component doing interviews with health professionals.
Dr Laura Forrest:She's about to start developing a survey based that will be informed by the qualitative component. But in terms of the survey development, this student is thinking about whether to use a nominal group technique or whether to use a different type of consensus method in order to develop the content of the survey. So not only will she gain experience in designing a survey, it'll also gain experience in using a particular methodology that helps improve the rigor of the content of the survey, make sure the questions are really meaningful and relevant to the target audience, and then she'll collect the data and then she'll do all of the analysis. And so then in the analysis component she'll also receive some training and gain some experience in doing more of a statistical analysis. And so she'll come out of her PhD with well-developed qualitative skills, well-developed quantitative skills, and can then apply those to future studies in terms of designing. And it also helps you learn how to learn other methods And so you can then continue to learn how to use other methods in research as you continue your research and academic career.
Matt Burgess:Yeah, okay, I think sort of before I studied research methods, I thought that quantitative and qualitative like they were completely separate and there was no overlap and you kind of just pick one or the other And if you were doing mixed methods it was sort of like adding two things together. But I think it's not as clear-cut as that.
Dr Laura Forrest:It's sort of a bit gray and there's overlapping sort of areas and yeah, It definitely depends on your overarching framework too, because if you're using mixed methods, according to the frameworks that you may choose, you actually need to be able to bring those two methods, the findings from those two methods, together to complement and to help explain each other. If you're doing multi-methods, then you might have standalone studies that are complementary, but you don't need to bring the findings together. Whether you use quantitative or qualitative or both, will depend on what it is you're asking and what is the best way of answering that question And so some questions, it's much better to use qualitative If you don't know much about whatever it is you're studying and you want to explore the area, whereas quantitative you may have more of a defined. I really want to know x y z And therefore you have a say, a validated instrument, or you design survey questions to answer that exact x y z question.
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Dr Laura Forrest:No, it was circumstantial. It was a time and a place. That came about because, after I finished my PhD in Melbourne, my husband was then accepted to study medicine at the Australian National University in Canberra. So we left Melbourne and we moved to Canberra. Well, actually, i stayed in Melbourne and finished writing my thesis for a good six months while he went and started medicine, so the two of us were like serial students for quite some time.
Dr Laura Forrest:When I got up to Canberra, i got a job, also working at the Australian National University. I got a postdoctoral position, but it wasn't in genetic or genetic counselling, it was in primary health care. So if you look at my list of publications, you can see there's a chunk of publications that are all about GPs and practice nurses and primary care. That's because that's that time I spent working in Canberra. We were there for about four years Now. While I was working and supporting my husband to study, he did pick up a little bit of casual work every now and again. One of the random jobs that he did was he became employed at the research institute, where I worked to help out with one of our studies, and so then, when we were publishing, he got to be an author on the papers. So it wasn't that, you know, it wasn't that we were purposely collaborating to do that study together. It was more that I was the postdoc working on that study and he was employed as a casual kind of research assistant role for the same one.
Matt Burgess:What a beautiful story.
Dr Laura Forrest:So, but since then, no, i mean he often jokes like could you just sneak me in to your authorship on one of your more recent projects? He really, you know he's really interested in research and we've both ended up working in oncology, so but he just, but I'm fairly I play fairly hard ball with that because obviously we have. We abide by the authorship guidelines that are established. The National Health and Medical Research Council here in Australia have authorship guidelines, as do a lot of other international organisations, with what, who's allowed to be an author on a paper and what you have to do to earn authorship. And so he does not get a currency anymore.
Matt Burgess:Yeah, sort of just tacking on your spouse probably isn't the best way to go.
Matt Burgess:So Not very ethical though, but sort of getting back to your PhD subject, so it was familial communication. One of the publications that I saw that you wrote was with a Yasmin Blastra and it was called Experience of Asian Males Communicating Cardiac Genetic Risk with the Family. Now Yasmin was a beautiful guest of mine on Demistrifying Genetics back in season one, but I thought it was an interesting paper because it was sort of comparing sort of the Western ideas with more Asian or Eastern, like were there big differences that you came across?
Dr Laura Forrest:Matthew, you're really testing me because that actually wasn't from my PhD. That was the first author of that paper. Sylvia Cam is a genetic counsellor, i believe she's in Malaysia. She came to Australia to do her Masters of Genetic Counselling and Yasmin and I co-supervised her for her research I'm pretty sure Avon Machokka was on the paper as well as another supervisor And so Sylvia, for her placement I think, went to Singapore, yeah, and while she was there did interviews with men about how they communicate this information in their families.
Dr Laura Forrest:So the interviews were really interesting because just the whole style of qualitative interview was really quite different. And Sylvia, because she's multilingual, could you know, there's a lot of slang terms that we use throughout the interviews and so she kind of translate for us what that would mean. So a lot of the men weren't very forthcoming, so there wasn't a lot of kind of in-depth description. But culturally the data was fascinating and it does. It did show that there were different ways of thinking about family and about communication. I think it was in Singapore, i'm sorry my memory is failing me, but because there's, because the participants were representative of the different cultures, of different people who live in Singapore, there were quite different findings what we usually would think about.
Dr Laura Forrest:But having said that, well, there's a few things that are really important about that research.
Dr Laura Forrest:We absolutely need more research in genetic counselling, but probably in health care in general, with people who are not white, and so it was such an amazing opportunity to be able to supervise a student who could do this research in another country, because we just don't have the evidence base to support our practice for people who maybe are in countries with different ethnicities and different cultures, and even in Australia we're really bad at recruiting people who are not white to our research, and so that's something that we are thinking very carefully about when we recruit, but also making sure that when we design, say, even just something as simple as the demographic section at the beginning of a survey, that we have more questions that go to greater depth to try and capture people's ethnicity, their culture, even their religion, because that can be something that drives people's beliefs and motivations around genetics.
Dr Laura Forrest:So that was a really great study to be involved in, and I think that also really speaks to the amazing opportunities that you get as a research supervisor when you supervise students who are coming at things from a different perspective or from a different country, and not only do you get to supervise a student, but you also get to work in a team with people who you wouldn't normally work with. So I'm friends with Yasmin and Evan professionally and personally, but I don't actually get to work with them that often, and so that was really fun. It's always a really great opportunity.
Matt Burgess:Oh good, yeah, i know diversity is such a major theme in a lot of areas of academia and research and, from a genetics point of view, a lot of our genetic testing has been on white populations and I know from variants of uncertain significance. We really need to have people from all different ethnicities and backgrounds, but I think that you did really well at explaining the importance from like a qualitative research point of view or like enrollment. Yeah, so that's really cool, and when I was thinking of sort of what we were going to talk about today, the mystifying genetics is really a genetic counseling podcast, but I've never actually defined genetic counseling, so I thought it might be fun for me to just read one of the definitions that I've got. So this is from a few years ago from the National Society of Genetic Counseling, but it says that genetic counseling is the process of helping people understand and adapt to the medical, psychosocial and familial implications of genetic contributions to disease. This process integrates the following interpretation of family and medical histories to assess the chance of disease occurrence and recurrence, education about inheritance, testing, management, prevention resources and research and counseling to promote informed choices and adaptation to the risk or condition.
Matt Burgess:Now that's a bit of a mouthful. But the reason that I sort of defined that was recently. You and I were at a conference in Glasgow, so the European Society of Human Genetics Conference, and we were in a session and the speaker was talking about outcomes of genetic counseling and then we sort of got onto the topic of the genetic counseling outcomes scale. So I kind of thought, okay, genetic counseling is a new profession but it's been around for quite a while, you know like a few decades. Then it took us a while to define it and then we've defined it now, but now it's kind of like what do we actually do and how do we measure that? And then you know. So you mentioned the idea of like validated scales, and so we have one now and I just wanted wondered if you could sort of comment on this scale and sort of what it means to you and like, do you use it? and yeah, can you tell us a little bit about it?
Dr Laura Forrest:Absolutely So.
Dr Laura Forrest:The genetic counseling outcome scale was was developed by Marian McAllister, who is the convener of the Master of Genetic Counseling course at Cardiff University, and she developed this scale as part of her PhD and when she was actually based in Manchester. The scale consists of 24 items, so it's not super short. But I think I need to take a step back and talk to you first about how the scale was developed, because that, to me, speaks to why it's so important. This scale is important and why why I use it in my research. The way the scale was developed was Marian started with a lot of qualitative work to initially define what it is that patients get out of genetic counseling. It was a bit like a let's look inside the black box type exercise because that until that point hadn't been really well defined and not from a patient's perspective, like we have the those professional definitions about what we think as healthcare professionals genetic counseling is. But what Marian did and this is in the late 2000s that she did these interviews and she's and this is all published work Patients responded that what they really got out of genetic counseling was a sense of empowerment. But the empowerment is actually consists of five different constructs and again you're going to test my recall ability, but they include things like a sense of control, so behavioural control, emotional control, cognitive control over the condition, hope. And the fifth one is escapes me, but you can kind of see.
Dr Laura Forrest:What I really like about this is this positive framing of genetic counseling. It's not a measure that that looks at the deficits or the things that people might not not get out of genetic counseling or the way that people might feel bad after genetic counseling. This focuses on, you know, if we are, as a profession, providing genetic counseling or engaging in a genetic counseling process with the patient and their family, we are promoting these beneficial outcomes for them where they can leave the session and feel like they can do something, that they they can act on this information and whether the acting is acting to inform at risk relatives whether the acting is knowing what their next step is in terms of understanding that their risk management available to them that's particularly important in the cancer space or whether the acting is understanding how their children or their future children might be at risk and say for future children, understanding what the options are for them in terms of reproductive decision-making. It's, you know, the scale measures that those kind of concepts for patients and it's been designed as a measure that you, that you can use before and after a genetic counseling session to look at the patients change in their empowerment. And so this tool is really useful for us in research because we can we can, well, we can just straight up measure people's genetic counseling experience pre and post and say you know, how are we doing in our service. Or we could compare that baseline to, say, putting an intervention in place in a genetic counseling appointment and seeing if the intervention changes patients empowerment. Now, without a tool, without a validated measure like this, like the G-COS, it means we have to look for other ways to measure what's happening within the appointment and whether there's any change in patients outcomes after a genetic counseling appointment or a genetic counseling process.
Dr Laura Forrest:And traditionally, if you look at the genetic counseling research literature, you can see that people have used other tools and the one, some of the most common ones, are things like the hospital anxiety and depression scale and the impact of events scale. Now, those are historically use you know their psychology driven tools but they're measuring things in terms of the negative, in terms of, you know, are people depressed after genetic counseling? are they anxious after their genetic counseling was that, was the receipt of genetic information so impactful that they were distressed? Now, yes, we are aware, of course, that and it's very well documented you hear it time and time again that when people receive genetic information, they certainly experience a dip in the way they feel about this themselves and their lives. There is that tendency for people to feel a bit depressed and anxious, and that's totally understandable. But we do know that they actually come back to baseline with by about a six month mark. So people do kind of come to terms with the information they've been given to the most part.
Dr Laura Forrest:But instead, what the G-COS is measuring is was that genetic counseling process? did that? did that provide them with with a sense of hope to? you know, is there are their positives actually to come out of genetic counseling? and I think that's hugely important to think about the way that we practice in that way, as that we actually bring something positive, something beneficial to people. We're not. We're not the bringer of doom and gloom that we're going to impact their lives so severely that we then need to measure it with. You know, anxiety and depression scales. So that to me, why the G-COS is so important.
Dr Laura Forrest:It was a significant piece of work for its time and we we have more scales now that have been developed specifically for the genetic counseling process or the delivery of genetic information, which which we use routinely in a lot of our studies. An example of how I'm using the genetic counseling outcome scale right now is using it in a clinical trial, and we are testing a patient screening tool that was developed by Mary Jane Esplan in 20 and published in 2013, and so Mary Jane Esplan is from Canada and the and Mary Jane developed the genetic psychosocial risk instrument. Now this instrument can be used. You can you can ask patients or clients to complete it within three days of their genetic counseling appointment, and that that gives you an indication of whether they are an increased risk of distress during and after the genetic counseling process, the genetic counseling and testing process, and then you can theoretically identify patients who are at increased risk of distress. And well, there's a lot of different options. You could have a look at what they've, what they've reported through the, through the GPRI, the genetic psychosocial risk instrument, and see if there are particular things driving their risk of distress, and then address them in your genetic counseling session, or you might just be aware that they're in increased risk of distress and they just need more time.
Dr Laura Forrest:Maybe they need more support after the appointment, and so that tool, that GPRI tool, is also something that we're really interested in looking at using routinely in our practice in the Parkville for Middle Cancer Centre and Genomic Medicine, which is the department that I work in in Melbourne, and that department is a con joint department between the Peter McCallum Cancer Centre and the Royal Melbourne Hospital. So we have a big team and we see a lot of patients, so that using the GPRI might be really useful for our practice also because we have a multi-disciplinary team. So patients come in to see us and they will usually see genetic counselors, but they also may see a medical fellow who's training to be a clinical geneticist. They may see a medical oncologist or a clinical geneticist themselves. Sometimes they see both. I like have more of a multi-disciplinary approach and sometimes they don't, and so our thinking really is that if we can use the GPRI to identify patients who have a greater psychosocial need, then those people need to be seen by a genetic counselor.
Matt Burgess:That's great. Yeah, i just love the positive approach that G-Cos has And it is like sort of focusing on that empowerment and that hope And yeah, i think you're right with like a lot of the other scales. It is kind of that sort of abnormal psychology, like the depression, anxiety and you know most of our clients. You know that may not be sort of that relevant, but yeah, i mean, i have all of these things to go through with you And I think we're running out of time.
Matt Burgess:But Sorry, I talked too much, No no, no, this has been a great conversation. I've loved it, i think. Just to finish, though, i love the qualitative research nature that genetic counseling has And I think that the more that I'm sort of learning about qualitative research and sort of moving away from quantitative, like I don't think, i really appreciated the power of a good quote. And when I was looking at some of your papers, there were two that kind of stuck out with me And I mean I would love to talk about both of these papers, but I'll just read the title. So one is about Lee Fraumeni, by your student, rowan Ford Shepherd. So the title is I need to know if I'm going to die young. So adolescents and young adult experiences of genetic testing for Lee Fraumeni syndrome. Like wow, like that, that's huge. Yeah, such an important quote. And I guess the other one that kind of grabbed me was a paper called social media usage in family communication about genetic information. I no longer speak with my sister, but she needs to know Any little comments about those papers.
Dr Laura Forrest:Yeah, i mean the Lee Fraumeni study that Rowan undertook for his PhD. The interviews were just devastating, uplifting, like when you, when we were coding those transcripts just a gamut of emotions you'd experience was like a roller coaster coming, gaining some insight into what it's like for these young people to live with Lee Fraumeni, and so that quote is powerful. But there were so many more And if you read the paper there's lots of really really great quotes that exemplify the analysis, the findings in that paper. So that's really the insight.
Dr Laura Forrest:And the family, the social media study was done by another master of genetic counselling students, sarah Layton, and that quote was great because it really went to show that even when people weren't in contact with their outreach family members often there's often challenging family dynamics and they maybe don't speak to people They still understood the importance of the genetic information for that relative that you know. There was a sense of altruism, despite maybe a breakdown in a relationship that they were still willing to tell someone. And social media in this study was demonstrating to be a really useful way of people, without having to you know kind of reconnect or have some kind of you know, in-depth conversation with people, they could put the information out there to the at-risk relative. They could communicate it in a way that was enabled them to maybe protect themselves if they're in a challenging relationship, or but they still did it And that quote was a really good one to kind of exemplify that.
Dr Laura Forrest:So, yeah, i love qualitative work. I actually think it's harder than quantitative, because the effort that is required in the preparing for an interview, getting that interview schedule right, doing the interviews they are exhausting. You really pour yourself into it. You just spend, however long it takes, absolutely listening to the participant and responding to them and gently guiding them, you know, to get the information you need, the data that you need, and then the analysis is like never ending. You could do it forever. I think you're right. Yeah, i think people underestimate it. The qualitative, work.
Matt Burgess:It really does sort of. You know, it's important that the researchers are involved and like it's more subjective in the fact that sort of their background and where they're coming from and their point of view. That's all really relevant. So well, thank you so much, laura. I've really enjoyed chatting with you.
Dr Laura Forrest:Yeah, thank you, matt, it's been a really interesting conversation.
Matt Burgess:Excellent, okay, well, i'll let you go. Have fun with Alfie and we'll talk to you later.
Dr Laura Forrest:Thanks, matt. I'm looking forward to catching up with you soon.
Matt Burgess:Okay, bye, bye, bye.