Hello everybody and good morning, good afternoon or wherever you are in the world. We have an excellent webinar today about qualitative research and especially within thoracic oncology. This webinar is hosted by the International Association and the Study of Lung Cancer and we will just jump into our first presentation. The first presentation is from Marlene Miesl. She's a clinical nurse specialist and an associate professor from Denmark. She leads multiple research programs focusing on advancing clinical nursing care through evidence-based interventions in lung cancer. Marlene's expertise lies primarily within qualitative research and she has authored more than 70 peer publications and five nursing book chapters. Today Marlene will give a presentation on qualitative methods in general, why, what is it and what it can do with the title qualitative methods in lung cancer research understanding the human dimension. Marlene here you go. Thank you very much Morten and hi everybody and thank you for the presentation Morten. I'm very delighted to be joining this webinar today to discuss the vital role of qualitative methods in lung cancer research. As Morten says I'm a clinical nurse specialist, senior research and an associate professor in the thoracic surgery department at Copenhagen University and Roskilde University in Denmark and I'm also a member of the IASLC nurses and allied health professionals committee. What I will bring to this webinar is a blend of clinical expertise in thoracic surgery and knowledge and understanding of qualitative research methodologies. With my many years spent in the field of thoracic surgery I've witnessed firsthand the complexities and challenges faced by patients undergoing treatment for lung cancer. My journey into qualitative research began during my master and doctoral studies where I focused extensively on the qualitative aspects of lung cancer treatment care and rehabilitation. This journey allowed me to delve into the nuanced experiences of patients, exploring their perspectives and uncovering valuable insights that quantitative data alone cannot capture. Today I'll be sharing with you an overview of qualitative methods, why they are essential, what they entail and the profound impact they can have on enhancing our understanding of lung cancer care. By the end of this session I hope to highlight not only their relevance but also the transformative potential of qualitative research in shaping more patient-centered approaches to managing lung cancer. I first want to highlight the objectives of qualitative research and we'll start by expanding the question why qualitative methods matter in lung cancer research. In the life of illness patients experiences are particularly significant as they form the basis of their subjective reality and influence how they manage the challenges it brings. To understand and address patients needs and desires, to be seen and heard in their suffering and existential challenges, the healthcare system with its healthcare professionals must explore and engage with such experiences. This underscores the importance of qualitative research which plays a central role by providing profound insights and highlighting patients voices and perspectives. So qualitative methods serve a crucial role in lung cancer research by offering a nuanced understanding of the human experiences within this complex disease. They also allow us to explore the emotions, perspectives and experiences of patients, caregivers and healthcare professionals in death. By delving beyond statistical measures, qualitative research uncovers the contextual factors that influence treatment decisions, patient and healthcare professional interactions and the everyday challenges faced by individuals affected by lung cancer. Moreover qualitative research can reveal insights that quantitative data alone may overlook. For instance it can illuminate the psychosocial impacts of lung cancer, shed light on disparities in access to care and highlight the personal coping strategies employed by patients throughout the illness journey. These insights are invaluable in developing more comprehensive patient-centered approaches to lung cancer treatment and care. Today we'll go into the methodologies and applications of qualitative research, demonstrating how they can contribute to a more comprehensive understanding of lung cancer and ultimately to improving patient outcomes. But what is qualitative research? How can we define it and how can we understand the methodological framework? Qualitative research is a methodological approach that seeks to explore and understand phenomena by examining the perspectives and experiences of participants in death. It goes beyond surface level observations to uncover the meanings, motivations and social contexts that shape human behaviors and interactions, which is particularly relevant in the context of lung cancer research. One of the key strengths of qualitative research lies in its adaptability and flexibility. Researchers can adjust their methods and approaches dynamically to suit the evolving research questions and the complexities inherent in studying lung cancer. This means that the initial plan for research cannot be tightly prescribed and that all phases of the process may change or shift after researchers enter the field and begin to collect data. This adaptive nature allows for deeper exploration of multifaceted issues such as treatment, decision-making processes, patient health care professional relationships and the impact of cultural beliefs on health behaviors. Important when designing a qualitative study is that it involves understanding the philosophical assumptions that guide the research, such as phenomenology, hermeneutics or social constructivism. These assumptions shape how questions are framed and data interpreted. But what methodological considerations are important in qualitative research? Well, key methodological considerations in qualitative research include selecting information with participants and considerations are made about about whom to speak with or observe to maximize the understanding of the phenomenon. Various sampling strategies can be applied such as convenience or snowball sampling as well as purposeful sampling or theoretical sampling. Qualitative research employs several primary methods to gather rich detailed data. Unquestionably, the backbone in qualitative research is an extensive collection of data, typically from interviews with open-ended questions without much structure or by observations without an agenda of what we hope to find. The methods can be individual interviews, which are a widely recognized cornerstone of qualitative research and involve direct engagement between the researcher and participant. These interviews allow for in-depth exploration of lived experiences, perspectives and emotions related to lung cancer. They provide a platform for participants to share their unique stories and insights, offering valuable qualitative data that enhances our understanding of the human dimensions of the disease. Then we have focus group interviews, which are structured discussions that involve a small group of participants who share their insights and opinions on specific topics related to lung cancer. Focus groups facilitate interaction and exploration of shared experiences among participants. Ethnography is another qualitative method involving prolonged immersion in the natural or institutional settings of participants. It allows researchers to observe and understand the cultural, social, interactional and behavioral dynamics surrounding lung cancer. It provides a comprehensive view of how individuals and groups navigate the challenges posed by the disease. By employing these methodologies, qualitative researchers are able to uncover nuanced insights that complement quantitative data, offering a comprehensive understanding of the lived experiences and challenges faced by individuals affected by lung cancer. Some of the key features in qualitative research is the possibility of in-depth exploration. Qualitative research excels in its ability to delve deeply into the lived experiences of individuals affected by lung cancer. By using open-ended questions and allowing for probing discussions, researchers can uncover layers of meaning and complexities. Qualitative methods capture the immediate, often pre-reflective experiences and perceptions of individuals affected by lung cancer. Furthermore, the methodology provides contextual richness. A hallmark of qualitative research is its capacity to capture the rich social, cultural and emotional context surrounding lung cancer. Unlike quantitative studies that focus on numerical data, qualitative methods contextualize these experiences within a broader social framework. This contextual understanding is essential for comprehending the diverse ways in which individuals from different backgrounds navigate the challenges of diagnosis, treatment and survivorship. What is also particularly important is to acknowledge that qualitative research embraces the subjectivity of researchers as a valuable tool for interpretation. Researchers bring their own perspectives, experiences and pre-understandings to the study, which can enrich the understanding of qualitative data. By transparently acknowledging and reflecting on their subjectivity, researchers can enhance the credibility and depth of their interpretations, ensuring that findings resonate authentically with the experiences of lung cancer patients and their communities. One of the most essential tasks in qualitative research is a comprehensive data analysis and interpretations. We know that premature closure of qualitative analysis leads to superficial and rudimentary conceptualizations, themes and findings that fail to capture the richness of patient stories. Therefore, achieving high quality qualitative data analysis involves methodological rigor, richness and a commitment to thorough interpretation that respects the complexity of human experience. It's essential to engage deeply with the data, allowing the stories and experiences shared by participants to guide the analysis. This requires an open-minded approach where researchers are willing to be surprised by what the data reveals. It often involves multiple readings of transcripts, making annotations and discussing insights with colleagues to ensure a rich understanding of the material. Data interpretation in qualitative research thus goes beyond simply summarizing findings. It involves placing the data within the broader context of existing literature, theories and frameworks. This contextualization enriches the interpretation, allowing researchers to draw connections between individual experiences and broader societal or systemic factors affecting lung cancer care. Finally, data analysis should be viewed as an iterative process. Researchers often revisit earlier stages of the analysis as new insights emerge, allowing for a dynamic and flexible approach that respects the complexity of human experience. As I wrap up this presentation on the crucial role of qualitative methods in lung cancer research, it's important to consider how these approaches deepen our understanding of the experiences faced by patients. So here are some key takeaways. Qualitative research serves as a crucial tool for uncovering the profound narratives that shapes patients' subjective realities in the context of lung cancer. By prioritizing patients' voices, we can gain insights into their unique challenges, fears and hopes, moving beyond mere statistics to truly understand the human experience behind the illness. This approach allows us to illuminate the daily challenges that individuals face throughout the cancer journey. From the emotional toll of diagnosis and treatment to the practical hurdles of navigating health care systems, qualitative research shed light on the complexities of living with lung cancer. Central to many patients' experiences is an existential quest for recognition and understanding. Qualitative inquiry captures these dimensions, revealing how patients seek validations of their struggles and experiences within the health care system. It emphasizes the importance of empathy and communication in clinician patient interactions. Qualitative research provides rich contextual insights that quantitative studies may overlook. By understanding the social, cultural and emotional contexts surrounding patients, we can better appreciate how these factors influence treatment decisions, coping mechanisms and overall well-being. This contextual richness is vital for developing patient-centered approaches to care. Lastly, qualitative research acts as a bridge between patients and clinicians, facilitating meaningful dialogue and fostering a deeper understanding of patients' experiences. This collaboration is essential for creating health care environments that prioritize patient-centeredness and shared decision making. In summary, qualitative research is a vital component of lung cancer research and care. It not only deepens our understanding of the lived experiences of patients, but also empowers them to amplify their voices within the health care system. By embracing qualitative methodologies, we can work toward more compassionate, informed and effective approaches to lung cancer treatment and support. I encourage you all to consider how you can integrate qualitative research methods into your own practice. Think about the unique stories and perspectives of your patients and how these insights can inform your approach to care. I invite you to continue this conversation beyond this webinar, share your experiences, collaborate on research and advocate for the inclusion of qualitative insights in lung cancer treatment strategies. Together we can enhance patient-centered care and truly make a difference in the lives of those affected by lung cancer. And please reach out. Now that we have explored the foundational aspects of qualitative research, I'm not going to introduce, Morten will do that, to esteemed colleagues who will delve deeper into specific methodologies and their applications into that thoracic oncology. But before we move deeper into their presentations, I invite you to reflect on any questions you may have for me regarding the broader implications of qualitative research in our field, as it would help to contextualize our discussions and explore more targeted insights during the upcoming session. So feel free to ask and thank you for listening. Thank you so much, Malene. I can see no one has yet popped in a question. So I would like to just because I know we have time for just a short one. And in kind of your last words was encourage people to do qualitative research. But how do you start qualitative research? What would be the easy way to start this? Well, that might not be a short answer, but I will. I think that I think, actually, a lot of healthcare professionals can be very good at doing qualitative research, because we are talking to patients every day, we're listening to patients every day. So of course, we have to shift our focus from our doing and information thing to start listening and start trying to do some interviews. And then think about that it's a quite flexible approach. So you can, yeah, it's, of course, a good idea to know what you're going to ask about, but you can start doing interviews, trying it out, go back and read about how, how can we analyze it? And how can we contextualize it? So, and then find some people to work with who can, who know about it and who have some experience in, in doing qualitative research. Yeah. Excellent. Excellent. And I will now introduce Melissa and Melissa, maybe you will start sharing your screen. And I will introduce Melissa Cunningham as the Director of Research for the Division of Thoracic Surgery at Temple University Hospital. She has more than 30 years of experience working in the field of thoracic surgery, with a special focus and expertise in caring for patients with pleural mesothelioma and advanced stage lung cancer. She's the co author of multiple peer reviewed papers on the topics of lung cancer and mesothelioma, and has lectured nationally and internationally on the nursing care of patients undergoing thoracic surgery. She has a special interest in clinical trial development and leads multiple surgery-based clinical trials at Temple University Hospital and the Fox Chase Cancer Center. She's currently a PhD candidate at the University of Maryland School of Nursing. Her doctoral research is focused on the experience of dyspnea for patients undergoing lung sparing surgery for pleural mesenterioma. And this is the subject of her presentation today. So Melissa. You're on mute, Melissa. Oh, okay. All right, thank you, Morten. I appreciate the introduction. And Melina, thank you for a tremendous overview of qualitative research and in thoracic oncology. So I'm gonna talk to you today about my dissertation research, which I am in the process of finishing the analysis and writing my dissertation. So to answer Morten's question, this is an example of someone getting into qualitative research and how to get started. So I'm a novice and quite honored to be part of this panel to talk to you about it today. So my study is at the perceptions of dyspnea and quality of life before and after lung sparing surgery for pleural mesenterioma. And I've done a mixed method study, but I'm gonna really focus on the qualitative piece of the study. So for those of you who don't know, pleural mesenterioma is a rare incurable, pleural-based malignancy related to asbestos exposure with a life expectancy of 12 to 18 months generally. The presenting symptoms that we see are pain, dyspnea, early satiety, weight loss, fatigue, and anxiety and depression. And this screen right here is a cross-sectional CAT scan of a patient with a left pleural mesenterioma. And you can see why dyspnea may in fact be one of the symptoms this patient will present with because their lung isn't trapped. Lung sparing surgery for pleural mesenterioma is associated with prolonged hospital stays, increasing morbidity and mortality, prolonged and difficult recovery. And with the focus on palliation of symptoms and improvement in quality of life. And this right here are pictures of the two snapshots of surgery. You can see this is the posterolateral thoracotomy, so which is why patients have a tough recovery. And this is a surgeon excising the tumor that's encasing the lung. So those are just some visuals of mesothelioma. So my study is theoretically based in the theory of unpleasant symptoms. So this theory was derived probably in the 1990s by a nurse who was looking at how symptoms presented to patients and how, you know, everything that influenced them. So the theory of unpleasant symptoms for, you know, for nursing, I think is certainly something not only easy to understand, but also something that is very applicable to what we do every day in caring for patients with thoracic malignancies. So the theory includes three major components. So these are the situational factors that contribute to the dyspnea experience that increase the distress frequency quality and intensity, and therefore affect the performance, and in this case, the quality of life. So this is the vicious cycle that the patients with unpleasant symptoms experience. The significance for studying this lung sparing surgery is considered investigational, intended to not only prolong survival, but also to palliate symptoms and optimize patient's quality of life. So in my experience as a thoracic surgery nurse, not all patients experience a comparable level of dyspnea after surgery, and the levels of dyspnea and other symptoms vary. So the aim of my study was to fill the gap that currently exists in understanding how lung sparing surgery for mesothelioma impacts the experience of dyspnea, and ultimately a quality of life. And by doing this, the objective of my study was to gain an enriched understanding of how lung sparing surgery for mesothelioma impacts participants' experience of dyspnea, and how that experience compares to their dyspnea scores and quality of life measures. So that's the mixed methods part. So the aims of my study were three. The first aim of my study was a scoping review, which is completed and under review. The second aim of my study was a qualitative aim, which we'll talk about today. And my third aim was the mixed methods analysis. So my aim too was to describe the physiological, psychological, situational factors influencing the experience of living with mesothelioma and dyspnea reported by pleural mesothelioma patients before and after lung sparing surgery. In order to do that, the research methodology that I use for both data collection and analysis was hermeneutic interpretive phenomenology and interpretive phenomenologic analysis. So I'll talk to you a little bit about what both of those are. Maurice Merleau-Ponty is the philosopher that I have gravitated towards. He's a phenomenologic theorist who embraces hermeneutic interpretive phenomenology, which is a methodology used when the research question asks for meaning of a phenomenon. The phenomenon of interest for me is dyspnea and with the purpose of understanding the human experience. And this philosophy underpins the interpretive methodology, which is essential in the science of interpreting human meaning and experience. And the important piece of this for me as a nurse researcher and also the nurse caring for these patients is that it doesn't require the researcher to bracket their own experiences and theories as part of the research process. So it recognizes and acknowledges the contribution that the researcher brings to the research in not only developing the research question, but also in designing the study. So that was all very kind of a lot for me as a junior qualitative research nurse to begin with. So I found this book, which sort of put it all together for me. It's called Listening to Patients and it's written by Sandra Thomas, who's a nurse. And really her philosophical basis is Merleau-Ponty's Phenomenology of Perception. And she states every nurse hears patient stories, but not every nurse listens to them in a way that permits hearing their richness and power. So as Melina said, qualitative research allows us to really truly listen to our patients and hear those stories and make meaning of those stories and ultimately potentially change practice to improve the patient experience. So as a research methodology, I thought this allows nurses to look beyond what is measurable and see what our patients are experiencing. So that's, to me, this book kind of helped me put it all together before I got started with my research. So my study is a pilot of convergent longitudinal mixed methods study. I have completed enrollment for a total of eight participants. Each, I interview participants before surgery. Each participant has an in-depth semi-structured interview and we also collect dyspnea 12 and a quality of life. They go on to have surgery, recover, and then study visit two is the same exact setup. I interviewed the eight participants and they had their quantitative measures as well. So my sample size, pleural mesothelioma patients that were consented for lung sparing surgery as part of multimodality treatment. My study was conducted at Temple University Hospital and Fox Chase Cancer Center in Philadelphia, Pennsylvania. The patient population is not very heterogeneous, generally males between the ages of 60 and 80, but I actually had two females and participants were over the age of 18 years old. I had consecutive sampling because it's a rare patient population and recruitment was at a single institution. And addition, demographic and clinical data collected included age, gender, race, marital study, tumor volume, time of pulmonary function for each of the participants. These are the two measures that I used. I chose both of these very briefly because it really focused on the experience of not only the cancer patient, but also using words that participants generally described dyspnea with. So these are the two measures that I use for the mixed methods part. My interview questions were very semi-structured, broad, but allowed the participants to really share their experience, not only with what it was like for them to live with mesothelioma and what their breathing was like for them. So these are the questions that I asked all of the participants. I recorded each interview, although they took place in person, recorded them by Zoom and then uploaded them on a platform called Envivo. This is very quickly what my database looked like in Envivo. So all of the interviews were kept in this database and I was able to do my analysis through this database. And then to interpret all of the interviews, what I used was interpretive phenomenal logic analysis by Jonathan Smith. I followed his methodology and it really focused on the lived experience of being in the world as an important part of each participant's experience. So this methodology really linked to my theoretical framework and Merleau-Ponty's phenomenology of perception. So the method for interpreting each of the interviews, each of the interviews after transcription, read and listened and edit, just because they don't always, it's not perfect, the translation. So making sure everything was accurate with respect to the transcription and then going through and kind of beginning your analysis by looking at the experience, searching for connections and then developing personal experiential themes with each and then kind of going back for each individual interview, you would take this process and I'll show you what that looked like, ultimately developing group experiential themes. So I can show you an example of what that looked like. So the original transcript is in the middle. So this is just one of the quotes from, and these are pseudonyms. So this is not, his name is not Andrew, but you give each of your participants a pseudonym. So you're not, you know, not a number because I think that becomes impersonal and quantitative. So you're looking at their statements and you're thinking about what their experience is and you just kind of make notes and then develop what are called experiential statements, which will, you'll begin to look at each individual's experience and then look at the group experience. From that, you develop what are called personal experiential themes. This is just one theme that developed for Andrew, which the emotional impact of the new reality of mesothelioma, each of these themes were defined. And then because it's a mixed methods study, I also related them to what their dyspnea score and quality of life. So each participant, you went through this analysis as well. So it's a, you know, an iterative process. Ultimately, these are the themes that my final analysis identified and then the before and after surgery, the different personal experiential themes. So this is the part where I'm in the process of writing and finishing the analysis, but each theme was either psychological, physical, social, or existential, which married back to my theoretical framework. My next work was to merge and compare the qualitative and quantitative data, which I'm finished with. This is a joint display that looks at not only the themes that arise, but also what their before and after scores were. So, you know, this is, you know, the measurable part, but very interesting and will be the subject of my dissertation defense. So these are the important people that have gotten me to this point in my education and this journey. And I am grateful to all five of these individuals. These are my references and not everything that can be counted counts and not everything that counts can be counted. So I leave you with that and appreciate the opportunity to share where I am in my dissertation. And someday I'll be able to present the full results to you all. So thank you. Excellent, Melissa. Yeah. And I'm looking at the Q&A and I will still encourage people to put some questions in here. But I have a question for you, Melissa. And as I asked Melina how to get engaged with qualitative research and now you have engaged qualitative research, are there any pitfalls? Are there anything you can recommend not doing? Well, I do think mentorship is critical. So it's not something that you can, I think that you could successfully do alone. And the other thing I would say is as you're going through it, because it's a volume of data to stay, you don't get to take a week off from it. It's constant. So I think at one point where you were busy with the scoping review while you're interviewing. So I think staying on top of it and keeping yourself immersed in the data continuously is very, would be my recommendation. But mentorship, I think it's critical. So what you're saying is when you just start, you can't leave it or? No, you live it. Yeah. Yeah, that's why I'm, yeah. But it's really, I think it's a tremendous way to look at the patient experience and what you learn. We listen to patients all the time, but I think what I've learned about the experience of my patients going through a colossal operation for mesothelioma is something I didn't, I never took notice to before. So I do think that a lot can be gained by this type of research. And I think nurses and allied health professionals are the exact people to do it. Thank you, Melissa. So I will present the next presenter and Mikaela, please start sharing your screen. Mikaela Ehrlich is a PhD student at the Health Research Center at the University Hospital of Copenhagen, also called Rikshospitalet. In her current project, she's exploring the everyday lives of people with lung cancer who do not participate in available rehabilitation programs. With a background in anthropology and social work, her expertise lies in ethnographic fieldwork among individuals who are often perceived as vulnerable or in need of professional support. In her presentation, Mikkela will discuss ethnographic methods and their contribution to theoretical oncology research and public health research in general. Please start, Mikkela. Thank you Morten for this and to all of you for hearing me today and learning to speak. So I want to tell you a little more about the ethnographic methods and I will use my current PhD and a study from there, yeah, to show you what it's about. So Melina touched a bit upon it but, oh great, I just need to make sure that everything is there. But it's not a method that's commonly used in health research. So I have some key messages for you and if everything else fails, I hope maybe you can take these things with you. So firstly, ethnographic methods are important because you can use them to recruit the people we not normally hear from or get insights into in health interventions but also health research. And ethnographic methods are a good way of understanding, actually, this life and everyday life. And furthermore, it's important when you do ethnographic methods just not to follow a standard but also allow yourself to like follow the field and what you see and hear using these methods. And I also will try to claim or say or get you to maybe be convinced that these methods are very important when you work with people and quality of life and health because it's the people's everyday lives you need to get understanding about. So we need more ethnographic methods in health research and in the plant. And I will try to convince you about this and using my study. And the background from my study was especially in quality in cancer. And many of you working with lung cancer know that people with short education and lower income, they are at higher risk of developing lung cancer. And these are also the people who die before others or where the disease progress and they come to these scans and to the hospitals too late. And often they do not participate in the health office or the treatment even. And they also experience a lower quality of life compared to people with higher education and higher income level. And we have we have rehabilitation services in Denmark and also other Western countries that should help people regain a sense of being or capacity and quality of life. And in Denmark, this is free. We have a universal healthcare system. But even so, a lot of people do not participate. And the people who do not participate often are those of short education and lower income. And that made me ask this question. Why do some people with lung cancer not participate in available rehabilitation? And I didn't head in doing my ethnographic fieldwork. I did this scoping review and tried to figure out, OK, what do we really know about this area? Because I heard a lot of people saying we don't know so much about these people, but I needed to make sure that it bends the wheel again. And what I found with my co-authors, also you Morten, thank you, is that we don't know that much, actually. Not that there wasn't a lot of studies. And this is published. You can see this publication. But most of the studies used questionnaires or interviews where a lot of people didn't attend. And guess who don't really bother answering these questionnaire surveys? That's people from shorter education and lower income. So the people who we actually need to know something about. And also a lot of the studies were, they were including people who did attend, or maybe a few dropouts, to be fair, but not people who actually did not approach these rehabilitation authors. So we needed another approach to include this. And actually, that's awareness. That's the way we do health science today. We don't include a lot of people. We include a lot of people, but maybe not the people that actually are subject to this inequality in health that we see globally and a big amount in Denmark. So when you look at the studies actually going into this, they say we need, the problem is that there's lack of trust in these methods and also a lack of accessibility. And that is where I say we need epigraphic methods. Because epigraphy, Marlene touched a bit upon, but it's following and being around people in their natural environments over time, getting to know them, building trust, but also being flexible. So coming to them, to them, make yourself accessible. But that's not the only reason why epigraphic methods is so important. Because this great woman, like me, who's an anthropologist, she said, what people say, what people do, and what they say they do are entirely different things. And it makes perfectly sense, right? So when we're doing surveys and interviews, we ask people about what they do, maybe their behavior, how they feel, and they will answer to the best knowledge and how they can, but they will answer in that only moment in front of you, maybe answering what they think they do, or how they feel right now, but not how their everyday life functions. And maybe they are also trying to answer the right question, what do you, what do this person wants to know from me? And that makes it a bit another kind of reality. So what epigraphic methods can do is actually getting insights into what is actually happening, by being around people over time. So what I did, was I did this 10 month fieldwork, where I was around people with lung cancer, adults, all types and stages of cancer, who did not participate in offered rehabilitation. So I was with them in their home, I would drink coffee with them, I was going to the bar with them, or going knitting with them, whatever they did in their everyday lives. And over these 10 months, in and out, making appointments with these people, getting to know them and their habits. And I had a massive amount of material, I brought this notebook doing field notes all the time, making as thick descriptions as I could, trying to get it all in. And that is very important for the coding process afterwards, and also doing new findings. And I was also moving from the field, so talking with them being around these people, and going back and looking at different theories and perspectives, talking with people to try to get to understand what was happening here. And I found that I could map a lot of my field notes and trying to figure out what's, what's, what do I see the most, and I could find that all these people use medicine, or they are, they don't want to go to the hospital, because the transportation or stuff like that. But what they didn't really tell me that much. So what was really interesting was finding what I call the moments of surprise. So where something was kind of nipping in my head, I was scratching and I was like, what was happening here? And I would love to tell you a lot more about this, but I can't read all this aloud in this time. So what I just wanted to know is, I looked at my field notes, and I found that when I was talking with these people, I tried, I kept looking for how the lung cancer transformed them, or changed them, or was a challenge in the everyday life, and found that it wasn't. So I needed to rethink my perception and saying, hey, lung cancer is not a disruption to these people. It kind of makes sense, right? Because why go to rehabilitation and be, do something about something changing your life, if it didn't really change it. And I looked at the culture, and I saw myself as a person as part of this culture, where we think about lung cancer as a disruption, as something terrible that people need, that are going to die from. And, and of course, this is, this should change their way of being in life. But if it, but I saw that it wasn't. So maybe I needed to, to find another way, or try to look at these people, understand how were they in the world, and how were they relating. So I asked instead, what do people do when they do not participate in available rehabilitation? And I found a lot of stuff, and sadly, I can't go into all of it. But some of these things are from conversations and built over time that I've pinned down. And there's this one person saying, oh, it's easy, I just take, it's easy to make the day go by, just take one day at a time. And that, that actually encapsulates a lot of the feeling of being with these people, because they were just there, and they were just in their everyday lives, and wanted to stay as they've always been, taking one day at a time. And they also said, like, it's not like it's a big shock to have this diagnosis, because they were used to ups and downs in their lives. So this lung cancer was a little thing. And it didn't really change their identity. They just kept going, even though they made just small adjustments for fitting their everyday lives in this disease, using different theories, sociological theories. I looked at all of my data, and found that, and tried to encapsulate this way of being, and what I came to call a coming aroundness. So when I say that people come around lung cancer here, that's because they appreciate the status of being in their normal environments. That could be the bar, going to the bar, if once, once a day, or coming up and taking this one cigarette, and, and drinking a glass of wine, which they've done all the time, or for a long time. So that's part of their routine, right? So going to the hospital, or going to rehabilitation, that actually disrupted that way of being. And the lung cancer didn't, because they could do these things, even though they had the lung cancer. And it was also a way of continuing their life. But an important fact here is, it was also a learned practice, because these people, maybe they were used to having different businesses, and were used to maybe not, yeah, maybe not having enough money to have the day go by, or used to traveling and changed environments, they were used to adapting to different things. So that's also an important part, and showing what a qualitative research also is, because this is a unique group, but it's a group that exists. And therefore, it's very important to also understand this way of being. So this is my last slide. That's what I, when I tried to pull all this together, I found this, that maybe inequality in rehabilitation, for this, these people, these are not so much about if they participate or not participate, it's about that they are not understood, or their way of living are not met in the healthcare system, because they wanted to talk with me, and they wanted to, to be met in their way of being, but we, but they didn't find that they could do that in the way our hospitals work right now, or other types of health services. And I needed to go through all this journey to really get to understand this, and I feel like that's the true power of ethnographic methods. So I hope I convinced you a little bit. Otherwise, you can always send me an email or, yeah. But thank you. Thank you, Mikala. And you can stop sharing screen. And maybe, oh, we need this one. Yeah, sure. Well, while that is on, I could ask you a question, Mikala, because I know you looked into patients that said no to the available rehabilitation. Do they just do their own rehabilitation? What do you think? Yeah, that depends on how we talk about and conceptualize rehabilitation. Because when we talk about it, it's also, you can't take away how we understand rehabilitation socially. So one person was like, oh, rehabilitation, that is going to a bike, and I hate biking. So she was just going all away from that. And so we just, we have this different social meanings we put into words. So I think if we need to call what they do rehabilitation, we need to change the way we talk about it socially. Because right now, when we talk about it, it's very institutionalized in, yeah, in different kind of practices. So but if you think of rehabilitation as doing something and finding meaning, despite cancer, then yes, definitely, they did something. Thank you. Maybe Melissa and Malene, you should start your video as well, while we'll wrap up. And yeah, I'll just have to thank you all three for some excellent presentations, and how to give all of us a run through to how qualitative research is performed and actually done in real life as well. And I will really love to encourage all the participants, all the listeners, watchers, to reach out to these three researchers, because as Malene and Melissa said, well, of course, you need mentoring, and you need just to try and do some of the things. But here you have three examples of three excellent researchers that could actually give you a good idea of how you could get started in qualitative research. So by that, I will finish this webinar, saying thank you for all the listeners. And thank you again, for the three of you. It's been some excellent presentations. Thank you.

qualitative research

thoracic oncology

lung cancer

patient experiences

hermeneutic phenomenology

ethnographic methods

patient-centered care

healthcare systems

lived experiences