Elaborated by the authors from the compilation of information present in
Journal | Impact factor (JCR) | Issue | No. of papers in the issue | Papers with interviews that were transcribed | In how many papers is detailed how the interviews were transcribed? |
---|---|---|---|---|---|
6.700 | 62 (2) | 12 | 2 | 0 | |
8.080 | 45(5) | 16 | 2 | 0 | |
5.329 | 56 (3) | 8 | 5 | 0 |
a 2017 Journal Citation Reports (JCR)
Source: Elaborated by the authors (2019)
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Leandro da Silva Nascimento lead on the conceptualization, data curation, supervision and validation. Fernanda Kalil Steinbruch contributed equally to all other aspects of the paper.
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A method of analysing qualitative interview data is outlined as a stage-by-stage process. Some of the problems associated with the method are identified. The researcher in the field of qualitative work is urged to be systematic and open to the difficulties of the task of understanding other people's perceptions.
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Analysing interview transcripts in qualitative research: how to.
Home » Analysing interview transcripts in qualitative research: How to
Thematic analysis serves as a vital tool in qualitative research, guiding researchers through complex interview transcripts to uncover underlying patterns and themes. By systematically organizing and interpreting qualitative data, thematic analysis enables researchers to identify significant narratives and insights that may otherwise remain hidden. This approach empowers researchers to transform raw data into meaningful findings, enriching their understanding of participants' perspectives and experiences.
While engaging with interview transcripts, thematic analysis encourages a reflective process of coding and categorization. Researchers actively seek to understand the connections between the data, delineating central themes that emerge. This method not only enhances data comprehension but also allows for a comprehensive exploration of participant viewpoints, ultimately leading to deeper insights and enriched qualitative analysis.
Thematic analysis is a valuable method for analyzing qualitative data, particularly interview transcripts. This process involves identifying, analyzing, and reporting patterns, or themes, within the data. By systematically categorizing the insights obtained from interviews, researchers can gain a deeper understanding of participants’ perspectives and experiences. This method allows for flexibility, enabling researchers to interpret and present the data meaningfully, which enhances the overall research narrative.
To effectively conduct thematic analysis, follow these steps:
Familiarization : Begin by reading through the transcripts, immersing yourself in the data to understand the content deeply.
Generating Initial Codes : Create initial codes by highlighting significant statements or phrases that relate to your research questions.
Searching for Themes : Group related codes into potential themes that reflect broader patterns within the data.
Reviewing Themes : Evaluate the themes against the dataset, ensuring they accurately represent the participants' views.
Defining and Naming Themes : Clearly articulate what each theme captures, ensuring clarity and relevance to your research objectives.
By embracing thematic analysis, researchers can translate raw data into insightful narratives that drive meaningful conclusions.
Thematic analysis is a systematic approach to identifying patterns within qualitative data, particularly useful in analyzing interview transcripts. The process begins with familiarization, where researchers immerse themselves in the data to understand the context and content better. This step lays the groundwork for subsequent analyses, allowing for a deeper connection to the participants' perspectives and experiences.
After immersing in the data, the next step is coding. Here, specific themes or patterns emerge as researchers highlight important segments of the transcripts. This coding process captures the essence of participants' replies, providing a structured way to dissect the complexity of the information. Following this, themes are reviewed and refined to ensure they accurately represent the underlying narratives. By utilizing these key steps, researchers can deliver rich, meaningful insights that enhance the understanding of the studied phenomena.
Effective thematic analysis begins with coding, where researchers systematically categorize data into meaningful segments. This process involves identifying keywords, phrases, or patterns in the interview transcripts that reflect the participants' experiences and insights. Once these elements are coded, the next step is clustering them into themes. This clustering helps in organizing your findings, revealing overarching concepts that provide a deeper understanding of the data.
To successfully code and cluster themes, consider the following key steps:
Familiarization : Begin by reading through the interview transcripts multiple times to get a sense of the content and context.
Initial Coding : Generate initial codes by highlighting significant quotes or ideas that resonate with your research questions.
Theme Identification : Look for connections among the codes to group similar ideas together, developing broader themes.
Reviewing Themes : Refine your themes, ensuring they accurately capture the essence of the data.
Defining Themes : Clearly define and name each theme to reflect its significance within the context of your study.
These structured steps facilitate a comprehensive understanding of the qualitative data and enable researchers to present their findings effectively.
Thematic analysis is a powerful method for extracting meaningful patterns from qualitative data, especially interview transcripts. As you begin to apply thematic analysis, it’s crucial to immerse yourself in the data. Start by familiarizing yourself with the transcripts, reading through them multiple times to grasp the overall context and identify initial themes.
Next, organize your findings. Begin coding relevant passages that reflect important ideas or concepts. These codes will serve as the foundation for finding broader themes. Once codes are established, step back to analyze how they relate and form overarching themes that capture the essence of the data. This iterative process can help uncover insights that are not immediately obvious but are central to understanding participant experiences and perspectives. By applying structured thematic analysis, you can convert raw interview data into actionable insights, enriching your qualitative research.
One fundamental technique for effective data interpretation in qualitative research is conducting thematic analysis. This method involves identifying and analyzing patterns or themes within the data gathered from interviews. By closely examining the transcripts, researchers can uncover common ideas and sentiments expressed by participants, which help in forming a coherent narrative.
To implement thematic analysis effectively, follow these key steps. First, familiarize yourself with the data by reading the transcripts thoroughly. This step helps you grasp the overall context and tone of the interviews. Next, generate initial codes that highlight significant features of the data, capturing pertinent details relevant to your research questions. After coding, categorize these codes into broader themes, ensuring that they accurately reflect the participants' perspectives. Finally, review and refine these themes to ensure they provide meaningful insights into your research topic, enabling you to draw well-founded conclusions and recommendations.
Navigating thematic analysis can be significantly streamlined with the right software tools at your disposal. Certain applications specialize in aiding researchers by organizing, coding, and analyzing interview transcripts. These tools often allow users to import textual data, making it easier to identify recurring themes and patterns from qualitative insights.
When considering which software to use, there are several factors to keep in mind. First, user-friendliness can impact the overall research efficiency; intuitive interfaces help speed up the analysis process. Secondly, features such as coding options enable researchers to categorize data effectively. Lastly, the ability to visualize findings graphically can enhance the understanding of the data, making thematic analysis more impactful. Utilizing these tools can drive a deeper understanding of qualitative data and improve the overall research quality.
Mastering thematic analysis is crucial for deriving meaningful insights from qualitative research. This process entails identifying patterns and themes within your interview transcripts, allowing you to gain a deeper understanding of participants' perspectives. By systematically coding the data and extracting key themes, researchers can reveal the underlying narratives that shape participants' experiences.
As you refine your skills in thematic analysis, remember that the quality of insights hinges on thoroughness and attention to detail. A well-executed analysis helps to illuminate trends and divergences, fostering a richer comprehension of your data. Ultimately, embracing this analytic approach will empower you to produce findings that resonate with both your research objectives and the participants' voices.
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Student resources, three sample interview transcripts.
The following three transcripts have been provided to help you test your coding skills. Please note these will open in a new window.
Interview transcript – a teacher’s observations of child oppression, interview transcript: digestive disorders – sam.
The following interview with Brenda [pseudonym] was conducted in April 2013 by Cody Goulder, a graduate student researching people with digestive disorders. Brenda is 25 years old and the transcription is as verbatim as possible.
As a coding and analysis exercise, review the transcript several times to become acquainted with the contents. Make jottings about passages that strike you and pre-code your initial work. Then separate the extended interview transcript into stanzas. Determine the most appropriate coding method(s) for the transcript to help examine the general research questions:
Also consider comparing or combining the analysis of this transcript with Sam, the other case interview on digestive disorders.
B: Bowel disorders, it is what it is.
I: How old were you when you first started to realize you were having problems with your digestion?
B: I was, uh, 21 and a half, to be exact, yeah.
I: And do you suffer from celiac or, how would you define your discomfort?
B: My colonoscopy says no celiac and not inflammatory bowel disease. My blood marker test says I have inflammatory bowel disease. I would label myself definitely gluten intolerant.
I: And for the record, can you describe what that means? Gluten intolerance? As you would describe it.
B: Gluten intolerance means that you, your body just does not digest or break down or really absorb gluten. And that is a protein that is found in wheat. I would also say that I don’t handle processed wheat well either. Um, and the symptoms are across the board. For me personally, um, I get, I’ll get joint pains, exhaustion, um, and I just feel incredibly full. After four or five bites, if I’m having, say, pasta or something where it’s just, after four or five bites, I can’t eat anymore, feel nauseous. That’s actually where the symptoms really first started.
I: Was there anything else beyond that? Say migraine headaches or …
B: Headaches. I have, and it’s gotten a lot better, I had, um, pretty bad hormonal acne, is what they would call it. Went across the board trying to treat it. I tried creams and antibiotics, retin-As, all that stuff. When I started to cut out gluten and wheats, my skin cleared up the best it’s ever been. I even went on Accutane and, I was on Accutane for five months and that is exactly when my symptoms would appear. I’ve been completely healthy my entire life.
I: Do you think there is a connection between …
B: Yes. I, well, studies have shown that if you possibly have Crohn’s disease or ulcerative colitis and you go on Accutane, there is research coming out that, it can set those diseases off. Um, and I just, I can’t, I think that’s what happened to me because of, like I said, I was completely healthy and then one day I’m having bowel issues and medications.
I: You said you’ve seen doctors, medical doctors, what was that process like of getting tested? What was the response?
B: Well, I went to, when I first got sick, I went to my internal medicine doctor and he’s like, “I don’t know if it’s acid reflux or what, so I’m gonna do a blood test on you.” And he did a blood panel, that’s when he said, “OK, according to these markers you have IBD, go to a gastrologist.” And, I went to one that was recommended, um, and she was just like, “OK, I wanna scope you.” I told her about all these symptoms and when I told her I’d been on Accutane, she kind of made a look like, “Oh, OK.” And then I have a family history, unfortunately, with inflammatory bowel disease. Both of my younger sisters have ulcerative colitis. I have an uncle who is deceased who had ulcerative colitis, and two or three second cousins that have ulcerative colitis and Crohn’s.
I: Can you describe what ulcerative colitis is, as you would describe it?
B: Um, it’s just your intestines not really absorbing the proper nutrients and inflammation, um, and that can be where, um, in any part of your gut. All the way to, Crohn’s can even burn your esophagus and mouth, all the way down through the rest of your body. It’s pretty intense. I was the healthy one. I didn’t have asthma or, not like my little sisters. The hell they went through in middle school with getting sick, I never had that.
I: Would you be willing to talk a little more about that?
B: So, my first sister got sick right around middle school. Her symptoms were, any time she’d eat, she immediately would have to go to the bathroom, instant diarrhea. She’d break out in a sweat. She’d get [ unable to transcribe ], which is a kind of skin lesion, which is, we talked to the dermatologist and, but until you treat really the underlying problem, you don’t know what’s going on. Um, what else did she have? And just going from doctor to doctor. Um, they did a scope and there was a little inflammation that they did find. Um, but they still were very hesitant of saying, “Yes, you have ulcerative colitis” because she wasn’t on, your typical textbook case. I found that really hard for doctors. If it’s not black and white, they …
I: We’ve discussed in other interviews, before this, the fear of using labels in …
B: They’re terrified. I mean, I went through several doctors and then finally, um, I think kinda, and going through puberty, I and, while my sisters were going through puberty, it was really hard. With all the hormones and changing, It just kinda, I think, throws a lot of things off. And then my sister, she’s what would you call remission, but it’s never really going away. You’ll always still have it, but she been in remission for a while now. Um, found the right doctor and he didn’t label her until he started treating her.
I: So it was sort of a trial by fire?
B: Yeah, we’d kind of tell them, “Hey, can we try this? It’s not getting better.” And then my youngest sister, right around the same time, about sixth grade, she got sick as well. Different symptoms. Um, she didn’t have, she had ulcerative colitis. But, there can come blood when you go to the bathroom. And she went in, was severely sick, she went to the hospital. And filled up the little cup they have, completely, with blood. And when they went in to scope, they couldn’t find anything. But she had the blood. She had the joint ache. She has the rash. She’s trying to eat as much as she could, but her belly would distend. And they wanted to send my sister to the psych unit. They thought it was a mental thing and we’re like, “No, she’s filling up the cup.” Like, really? And it was just their reaction because they couldn’t figure out why because the gold standard in diagnosing these things is the colonoscopy. But it’s so hard with these diseases to find it.
I: Why do you think there seems to be a reluctance or a unwillingness in wanting to just get right to the point?
B: I’m not really sure. I don’t, I don’t know. I don’t know if they’re taught that in med school that, you know, that it’s not black and white. And we have found also that, when you are in a hospital setting, you don’t see the same doctor. You have a doctor for a week and then, you know, in all honesty, they weren’t all on the same page. They had their own egos and their own agendas. My sister was in there 21 days. Still, we were finally like, “This is enough. It’s not a psych problem, discharge her now.” And she was still bleeding, two weeks later, she was anemic. We ended up, by chance, being able to get into a different doctor at a different practice who would treat her as if. She was in remission for about three years, she’s out of it now, but she’s got good doctors. She’s still trying to figure out how to beat this beast.
I: Are both your sisters, and you as well, on prescription medication?
B: Um, yes. My little sister Tammy now, I think because she’s been in remission is on like a, something for acid reflux. My younger sister, she’s not on any medication. And my one sister, yes, but I don’t remember what she’s on.
I: And, none of these symptoms have been shown in your parents?
B: My mom, yeah. I remember growing up and her having bowel issues, yeah. And, it’s all on my mom’s side. My dad’s side doesn’t have any bowel issues. This gluten intolerance thing, I didn’t really understand it until I was taking a class with a friend and I was just telling her, “God, I really don’t like.” They labeled me as having GERD and put me on severe, pretty intense medication. I just don’t like the fact I have to take this medication.
I: What is GERD?
B: It’s similar to the acid reflux disease. So, a lot of it is by diet. Little things can set it off.
I: Before all this, what was your favorite food?
B: I loved pizza and burgers.
I: Would you say you ate a pretty balanced diet? Not loading up on pasta …
B: No, but it’s funny ‘cause when I was sick, that’s all I wanted, you know? That sounded really good to eat bread and crackers.
I: Is that because it was a comfort basis?
B: No, um, I think people with that, like sugars and complex stuff, especially like all the sugar that’s really not good for you, it’s addicting, you know? The longer you are away from it, it’s easier to stay away. Have a little and it’s like I gotta have more. It’s difficult.
I: When you started to cut out gluten and bad sugars, what was the response?
B: From like a friend?
I: Yeah. Were you a partier?
B: No. I was so, no, it was weird. I kinda went through my drinking when I was underage. By the time I turned 21, I really didn’t enjoy it. Actually, last night, I feel it. Like, I didn’t drink that much and I feel like hell the next day. Two beers. But, say if I have food and water with it, it’s still mm-mm. So, when I cheat, I’m like, “You’re gonna pay for it the next day.” But it’s hard. Not wanting to go out with friends and, you know, it gets kinda, after a while, “Oh, I’ll just have salad cause that’s really all I can eat.” I can still eat stuff, but finding restaurants that are accommodating to eating to that.
I: Is there a feeling of being ostracized? Your friends or actually from the restaurant itself?
B: Yeah, it’s complicated. I just tell them now.
I: Do you have a specific experience that jumps out in your mind?
B: Yeah, I’d just gotten, a couple of times when you ask, “Do you have a gluten-free menu?” They’re getting much better at it, but I remember when I first started, like a year and a half ago, it was still kind of like [ rolls eyes ], “Oh, you’re one of those people.” Um, cause some people will cut out gluten because they think it will be great for them. But it really doesn’t hurt them. So, I don’t like to be grouped into that. It’d be cheaper. Probably be easier just to be able to go with the flow.
I: How does that make you feel when you talk to someone who says they’re cutting out gluten for my diet, but they can eat bread if they desperately wanted to?
B: Um, close friends, no. Not at all. I mean, because, well, they’ve seen me not do well. I’m just not very nice either because I don’t feel well. Um, but strangers, yeah, that don’t get it. You know, there’s kind of a judgment and they, “Why are you, are you doing it to lose weight or … ?” No, I’m doing it ’cause I feel miserable. But that’s also something that’s going around like in the media, I know, it’s being hyped up as, “Cut out gluten, it’ll make you lose weight.” I think that anything, if you’re just trying, doing it to lose weight, that won’t stick.
I: How do feel with all the mass market of gluten-free this, gluten-free that?
B: It’s a little overwhelming, to be honest. You really have to look at the food labels. Are they taking out this? I still, and trying to find stuff, um, at the grocery store that I can eat, but it takes forever. I try to, at least, read every label. Grocery experiences are long [ laughs ].
I: Is there a specific thing that you want, but know you can’t have?
B: Yeah, that’s my downfall. I mean, I’ve found some places that are gluten-free. But, you know, I haven’t found, has anyone found a gluten-free pizza that you can make at home, send it my way ’cause [ laughs ] …
I: In addition to reading labels and breakdown what I can and can’t eat in the moment, how has your lifestyle changed to feel comfort?
B: With gluten intolerance, I’ve done some research. But I’ve gotten to the point where I’ve, I’m taking a class with a friend and she’s like, “I have stomach issues. Why don’t you read this book? It’s called Eat Right for Your Blood Type .” I didn’t know my blood type at the time, so I started reading the type-O diet and I was like, “Oh my god.” It describes how, based on if you eat these foods, it’s what you have. It’s so me. I had to kinda look away. Is this really me? And it was. So for me, I follow the hunter-gatherer type, meat, fruits, and vegetables. Um, and so that alone, that book and I’m so grateful for my friend, because that brought a sense of comfort.
I: It sounds like you’ve got a lot of support around you.
I: And, have you been able to pass that along to your sisters? Did they ever talk to you about what it’s like to be in middle school and have, really feel, have these differences?
B: Oh yeah, it was really, really tough. Kids, not so much kids, but I remember the teachers would not, being, not really getting it. And my mom would try so hard to, I mean, “Hey, this is what my daughters have. There are the type of medications, heavy medication at one point that they were on. Heavy steroids that make you, not really there. Um, she’s maybe not paying attention because her pain or she’s trying not to shit her pants.” And, um, yeah they had a really hard time finding kids that understood what they were going through. And, it’s a disease on the inside that doesn’t always manifest on the outside. And I think a lot of diseases are like that. Just being aware.
I: Especially when a lot of the symptoms are connected to other diseases? Are you concerned, have you thought about at all what this could lead to?
B: That’s why I changed my diet because I know the blood markers, so, in some ways that kind of means I’m a ticking time bomb. You know, I could get the flu really, really bad. And that could set off this disease. Um, but I’m doing everything that I can in my power as far as diet that I can to control it. Because that also can set it off. I’ve adapted this new lifestyle. Exercise like three, four times a week. Um, that’s been the hardest one, to really stay committed. I’ve conquered the food part, but not putting in the exercise as well. And doing yoga ’cause I stress easily. And, that’ll feed into it, that stress will lead me into making poor food choices. So, finding the balance is what I’m really focusing on.
I: Do you feel that, when you’ve had a bad day, it’s the emotional connection, or that emotion is tied to reactions? “I feel bad, I need comfort.”
B: That’s something to be aware of, definitely. That’s happened to me.
I: Do you think there’s a danger in people becoming so emotion-oriented?
B: Oh yeah. Um, yeah you gotta find balance you know? And being aware, it’s all kind of connected.
I: Is there a point where you’ve had to battle and fears or overwhelming emotions? And you had to bring yourself back? Trigger or phrases that help keep you in balance?
B: Um, I have to stay in the present. And not, “God, what if this happens?” ’Cause that, you know, will set it off. And that’s where I need to be, in that present and just focus on that. And when I don’t, that’s when it gets me and stresses me out. And in listening to your body is the best thing. You are your best advocate for yourself. Not taking the medical. Being in tune. It’s clear if I’ve had a bad week. I eat foods I shouldn’t have been eating. I feel really lethargic and exhausted. If you don’t want to feel like this, don’t eat it. It’s pretty immediate.
I: Do you feel you’re leaning towards organic?
B: I have found, for me, the hunter-gatherer, animal protein. I’d watch documentaries on how animals are being treated, on what they’re given and what we’re absorbing and the cancer rate and all. So, I tried vegetarian, but that means I upped my soy. A lot of soy, had a lot of grains too, even lentils, which are supposed to be really good. And I felt miserable. And I gained a lot of weight. And, they, “You know, don’t eat meat and you’ll lose weight.” For me, I felt horrible. Like, my skin was breaking out, I gained weight. I think like everyone is honestly a little bit different. It’s unfair to the consumer. I gotta eat animal protein or I’m not a very nice woman. I’m cranky. Watch out! But, on the other side, I’ve got to pay more for grass-fed animal meat that’s not injected with hormones. I think that’s what’s causing the cancer and all these problems. It’s because of what they’re giving to the animals. And the hormones. Of course we’re gonna get sick. Of course. It’s infuriating, it really is. But you pay more, a little bit, for the great meat, you know, versus paying several years down the line severe medical bills. I’m not saying you couldn’t, one day, have cancer. But you’ve done everything in your power to not get it and I just got the short end of the stick, but at least I can be in control of, at least I’m eating this. Holds me accountable.
I: Last question, what’s it been like?
B: I have a really tough stomach. Yeah we, my sisters and I, do talk about it. Definitely check in and, our poor dad. We’re all so females that, sometimes, there’s a point we’re at dinner conversations and we talk about our bowel habits and what was going on. My poor dad. So, yeah, there’s definitely an open communication and you gotta have a sense of humor. You got these issues, you have to have a sense of humor.
I: What would say to someone that provides comfort? It’s OK, this is life?
B: Um, we just, we just joke. “Hey, remember that one time when,” you know? You just have, you just kind of have a sense of humor about it, accepting what it is and try to stay positive is how we try to move forward. And be on top of it. And really choosing to have a say in relation to our digestion and stuff. Being aware. It’s different for everyone. Be in tune with what your symptoms are. You’re your best advocate.
An interview was conducted with “Ms. D,” a female, fifth-grade, veteran elementary school classroom teacher in preparation for an action research project on school bullying. The research team interviewed fourth- and fifth-grade teachers at a lower middle-class suburban school site to learn about forms of oppression they saw and heard most often among their children.
As a coding and analysis exercise, review the transcript excerpt several times to become acquainted with the contents. Make jottings about passages that strike you and pre-code your initial work. Then separate the interview transcript into stanzas. Determine the most appropriate coding method(s) for the transcript to help examine the pre-action research question:
Also compose an analytic memo that brainstorms the types of strategies that might be taken by an action research team to lessen the amount of child oppression in a school setting.
I: How do children in your classroom oppress each other?
MS. D: Well, they call each other names.
I: Like, what kinds of names?
MS. D: Oh, we’ve got a little girl in here, she looks different and she acts different, so they’ll make up some name that they call her. They, um, it’s the same kid, it seems like every year there’s one kid that gets picked on more than somebody else, because they’re different, because they might look different, they might act different. Say, for instance, she will say something or she gets very excited about something, they’ll tell her to “Sit down,” “Be quiet,” “Stop doing this,” they’re like on her case all the time. Then you’ve got another kid in here who, well he loses control of himself, and so he blurts stuff out or yells out, and the kids will turn around and yell back at him. And out on the playground they do tend to sometimes get pushy-shovy kinda stuff. Like with her [ pointing to a desk ] I’ve watched them actually walk by this little girl and purposely bump into her or something like that, but then even though you’re watching them, the kid’ll turn around and say, “Well, I didn’t do that” after you confront him. And it’s not everybody, it’s just a few, and it’s a few that have behavior problems that seek attention, and they don’t know how to get attention any other way besides a negative way.
I: How do the students deal with these conflicts?
MS. D: They come to me right away to tell me, so then I have to deal with it. I’ve told them to do it that way. I don’t want them taking means into their own hands, ’cause if they do then they’re causing more problems than, because they tend to get physical or it’s a taunting kind of thing that will take place all over the place. So if they come to me right away then I can deal with just the two people it involves and that way it doesn’t tend to get blown out of proportion. It stays right there rather than getting other kids involved in the situation.
I: What kinds of oppressions might your students deal with in their home environment?
MS. D: Oh, jeez. There’s some sad cases here. There’s this one boy who seeks attention because his mother is a drunken alcoholic. The mom says he’s her best buddy and works hard to get him what he wants. He’s had to meet with the school counselor. There was another girl who was taken away from a bad family situation in Philadelphia because of physical and verbal abuse, her mother was into witchcraft. She moved to live with some relatives here but the home situation here isn’t safe either, so the police had to be called in. But she seems to be settling in now. Her mom’s moved down here but the girl’s slowly evolving into one of the neighborhood kids. She’s the one they pick on a lot because she is a little different, but she’s had different experiences than a lot of kids, too.
I: What kinds of differences do kids tend to target?
MS. D: With this one student the kids seem to zero in because she did look different, and she …
I: Clothing-wise?
MS. D: No, just physically, she, she just, and she acted kind of strange, she would just rock back and forth in her chair, that this was a thing of the abuse, that kind of thing. And one of the girls said, “Stop it, stop it!” and I would have to go over to her and just put my hands on her, “Don’t do that now,” that kind of thing, and we had to have her meet with the school nurse. And she’s the type of kid who thinks she knows everything, so that was another thing that bugged the kids, that she would, and yet she does know a lot, but they just didn’t like it, that it was her . You know, once they had this idea that something’s wrong with them, or they don’t like them, then when they start to interact with the kids and the kids kind of, they’re not accepting. But most of the other kids in this room have been together for years, so she’s brand new, the other kid with problems is brand new, and so it’s the ones, they’re kind of not fitting in because they weren’t with this group as they moved on through school.
I: Like a newcomer?
MS. D: Uh-huh, I think it is like a newcomer thing. It’s basically the new ones. These two new ones were pretty outgoing and were put down by the others, but another newcomer moved quietly and she was easily accepted because she didn’t stand out. There’s another boy who’s obnoxious and the class gets upset with him. The kids pick up on attitude. Their whole thing is attention: how can I get attention and bring it to myself? Acting goofy or silly is a big thing, and some of the kids’ll say, “Oh, stop acting like that.”
The following interview with Sam [pseudonym] was conducted in April 2013 by Cody Goulder, a graduate student researching people with digestive disorders. Sam is in his early 30s and the transcription is as verbatim as possible.
Also consider comparing or combining the analysis of this transcript with Brenda, the other case interview on digestive disorders.
I: How old were you when you first realized you had something, celiac or, I should clarify: do you have celiac or is it a variation?
S: And I’ll clarify, too.
I: Yeah, absolutely.
S: A few things: I do energy healing and, um, as well as like, um, counseling of people like with diseases of these natures. So, because of that I also go to medical doctors or energy healers and nutritionists or people more off, off the beaten path, acupuncturists, things like that. And because of that, these doctors are hesitant to specifically name anything, because once you put a label on it, you give it power. You give it a consciousness and the more you, the more that consciousness is spread out, spread around like ADHD and all of that first came out. It gives it a negative connotation, so I was never told celiac. I was never told, the only thing I was ever told was, in the early stages was candida and parasites. And candida is a form of a parasite. Um, and other than that, they don’t address it to me and I don’t really ask. I’ve, I’ve asked, slipped up and asked, in the past, um, the doctors just like don’t worry about it. Because then, I’ll start to research it and buy into the symptoms.
I: Why do you think that is? Aside from not wanting to promote, for lack of a better term, hysteria, why do you think doctors are so reluctant to label …
S: Um, I think medical doctors is because of the lawsuits. Per-, perhaps, and the liability. They don’t wanna, um, but, but the alternative doctors I go to, which are, I mean they’re also chiropractors, so they are doctors. Um, [ pause ] for one of the reasons I just mentioned so that my consciousness doesn’t buy into it and I create more of the disease, within my own body, which I, we all kinda tend to do anyway.
I: For the record, and certainly help clarify because, through this project, we’ve talked to other people we’re interviewing and we’ve heard different labels for it. So, can you help explain the variations?
S: If you went through my symptoms, you would say, you would say celiac. You would say there’s a lot of stuff. And I just saw something on Facebook, um, a medical doctor, I don’t know, I was trying to find it for you. I don’t know whose page it was, ’cause I have so many fan pages. It was a medical doctor that said, “What I used to, when I was practicing medicine, my patients would come to me and they had all these symptoms, which is fatigue, chronic fatigue, like all the, um, diarrhea, chronic diarrhea.” I’ve, you know, chronic stomach pains, intestinal pain, and things like that, um. Vision problems like floaters, um, I forgot what else she said in the list, but it’s like, “Oh, that’s all me.” There’s, there’s no name for that. But, she said, “When I finally would ask my patients what their body needs, because they went through all the protocols and all the testing and nothing would ever change. When I finally asked my patients what their body needs, some would say, you know, this medication or whatever.” That’s a small percentage of what this host said. The rest of the people, 98% would say I need to quit my job. I need to go do something that makes me happy. My body needs this. My body needs, you know, and it wasn’t related to anything that, food-wise or medical-wise, it was related to lifestyle choices. And, as a healer myself, that’s what I’ve learned as well and, you know, knowing this I should be able to heal myself and slowly, slowly, gradually I am. But, it’s, it’s easier said than done. Especially when you’re dealing with something that’s so emotionally tied into your, your system and your psyche. Does that make sense?
I: Yeah, it does.
S: And that kinda follows through with what, when I’ve started reading into the candida years ago, I was first diagnosed.
I: Can you explain a little more about candida?
S: Candida is a yeast infection. And, when I first heard that, I’m thinking “Oh, which chick did I get it from?” [ laughs ] And so, I started like, after a while, after about a week, I’m like, you know, I’m gonna google this, and what it is is, we all have this natural yeast that occurs in our bodies. And, what happens over, it could be a traumatic issue. A traumatic occurrence or a thing like that, um, that happens in our lives and that yeast will, will, like, say we have X amount of yeast in our system. Let’s just, naturally good yeast. Quote unquote, good yeast.
I: On par with, say, the good bacteria living in our stomach.
S: Right. Well, when that good yeast expands to like double X or triple X or however, I’m just, I’m not, um, when it expands, that level, then it starts to become bad yeast. And it starts to take over and, it’s not, it’s only bad because it’s too much of it. And that yeast will affect your ability, and then the more sugar you have, the more you feed the yeast. The more gluten you have, the more wheat, the more things that, you know, have gluten in them, the more you’re gonna feed it. Um, and so forth until you get to the point where it’s like, you can, and I’ve read the diets and the diets, you can’t even, it’s almost impossible. They say it’s almost impossible to do. You have to do this diet to, to cut out all the yeast, you can’t even have carrots.
S: ’Cause of the sugar. But, then they say carrots are iffy because carrots also help kill the bacteria. It’s like there’s so much unknown about this, but it’s said it’s all, but the consensus that, I googled of all these websites that talked about candida is, it’s all emotional in origin. Hippocrates said the same thing. He’s the father of, you know, modern Western medicine. He said all disease is emotional in origin. As a healer, I know this. Because, even cancer starts as an emotion. And the more that emotion manifests, you get a tumor or something negative. Um, and I full-heartedly understand how that works. Because, especially in dealing with patients and myself, it’s like as soon as you get rid of that emotional counterpart, the disease goes away. Even if it’s cancer, I’ve seen it happen. They say it’s pretty amazing. Um, so, I’m sorry, what was your question?
I: What was candida?
S: Yeah, so, that’s what candida is in a nutshell. And so, that’s what my doctor started treating me for. My doctor, my healer, doctor, chiropractor started treating me for. And, and she told me to cut out all of, and this was probably about in oh-five [2005], it was about a year after I graduated [from university], getting my master’s. Um, it was, she treated me, she said no sugar, no caffeine, no dairy, I couldn’t do dairy either and no gluten, obviously. And, gradually I slowly weaned myself off, ’cause she was a vegetarian at the time, I slowly started weaning myself off of meat and stuff. I did eggs for protein. And what ended up and, I believe this was still, this was less than a year, about a year after my mom’s death, which was devastating for me, and I think …
I: What did she die of?
S: Oh, I can tell you the whole story. Can I?
I: Absolutely, we’ll circle back.
S. Yeah, um, and I believe that’s what started this manifestation in my stomach and my, my intestines ’cause I can tell the difference now. After a bowel moment I can, I’m just worn out. Um, so it was a year after my mom died and I went off all these things. Did the eggs for protein for about two months. I lost 40 pounds of muscle. And fat, but mostly muscle. So, I went from a size extra large shirts to mediums.
S: It was bad. It wasn’t, and I was also in depression and that’s why I want to preface that because I believe that depression plays a part in this all. Is that, whether we know it or not, you know?
I: There’s different levels of depression, period.
S: Exactly. And, there’s, and then there’s the fears that I constantly face like, within myself, and I think that contributed to it. I notice that when, like this HOA [Home Owners’ Association] thing and I think, I thought it was perfect that it was coming up. I hate the HOA, just like you were saying. And I was, I don’t know why I was having such anxiety over this meeting, ’cause once I had the meeting, it wasn’t a big deal. But like, there are certain people that I thought were going to be there, and that weren’t there, that I was like, I don’t wanna deal with these assholes, right? So, that, and that, and I was paying attention to what was happening, having anxiety this past week and it was going, it was going right to my gut. And, I’m like, well that’s not good for me. What am I doing to myself? But, like I can intellectualize it. But it’s, but until I like either do meditation or just like breathe and just get it through my system or just face it, which is what I did today, I, that’s why I went to the meeting, um, until you face that fear, you can’t, it’s almost impossible to get rid of it. Because once you face your vulnerability, that’s when, that’s when you empower yourself. But, most people are used to running away from their vulnerabilities. Does that make sense?
I: Absolutely.
S: So, OK, you wanted to go back to my mom or, I kinda jump around so keep me …
I: No, it’s fine, I like to jump around. Um, so how does, let’s backtrack a bit to candida, trying to get a scope of these disorders?
S: I can tell you how candida manifested into other things if you …
I: Absolutely. Oh totally. Yes, so how does it differ from, say, someone who has celiac or has a general gluten or lactose or … ?
S: I think people that have celiac I, don’t quote me on this, but I, well, you can quote me on this.
I: I don’t have to use it.
S: I, I’m pretty sure people who have celi-, celiac also have candida issues. I’m pretty sure and, you know, chronic fatigue plays into all of that. I’m pretty sure that people who have gluten intolerances have the celiac, whether they were tested for it or not. I’m not sure that most medical doctors, some of them do ’cause I’ve been to a few that do, will test for celiac. There’s a spit test you can do. There’s all these other tests you can do that are, that don’t cost money. But how does it come, go into play?
I: Is it sort of like …
S: I think it was, for me, I think it was the first stages. Um, at least as far as a diagnosis goes and my doctor slowly started treating me for celiac. Once she got that under control, then we started treating me for, like, if I have gluten I’m bleeding out my, you know, out my ass because, and I didn’t know that’s what celiac did. Because, my friend works, he’s a higher up at [a restaurant] and he works in the kitchen and he’s like, he’s like it’s very serious. In like, really, ’cause he, everyone calls it celiac ’cause it’s more widespread as a diagnosis and that’s what we label it.
S: In all intents and purposes, you could say I have that, but I don’t like to use that label.
I: Is that because you feel that, as a medical term, celiac is an easy way to create an umbrella over these conditions?
S: Absolutely. Its, it’s just like, back when they used to say ADD and ADHD they would come up with all these initials for that. You remember those, when that happened?
S: And I’m just like, that was us growing up. I was an A student, but it was still, we were, my little brother was way even more hyper. My mom didn’t know what to do with that. But she didn’t drug him because she didn’t want to deal with him. She just dealt with it. And now we call it something so we can put someone on drugs. But it doesn’t help them. You know what I’m saying, it’s like toxic to those kid that grew up, and now they’re adults, a functioning, and they’re like, that was the worst thing you can do to a kid is put them on the drugs, because they can’t access, access their creativity.
I: What are your feelings when you see gluten-free diets, everything’s being marketed as gluten-free this, gluten-free menus when you are in a restaurant?
S: I actually, honestly, I appreciate it. I don’t think of it as, as a bad thing. Like, what is it, on Picasso’s Pizza, Pan Gusto’s Pizza, which is one of the old Picasso’s, they’re, almost all organic and all gluten-free. Organic, I think, fits into it. If you’re gluten-free you’ve got to watch the pesticides you’re putting into your body. Um, and diet, we’re learning more slowly as a society that diet is the best, is a better medicine than actual drugs. Um, it’s what you put into your body, not just the preventative, but um, as a way, that when you do have something, as a way to get out, get yourself out of it. Um, and …
I: Because food is something that you need and you cannot operate without it.
S: Right, right. And if you’re eating stuff that is attributing and continuing exacerbating the issues that you have, whether it’s emotional or not, I mean there’s still, there’s something in your system that’s exacerbating the problem, then how, how is it that any amount of medicine or anything else going to help you? But if you eat stuff that promotes the good stuff to occur and helps you, help you feel better, helps you to feel more energetic and have energy to exercise, that alone and just a better outlook can push away most diseases in anyone’s body, whether that’s gluten or anything else.
S: Um, there’s so much more I was gonna say because, like, as I’m talking, I’m having all these thoughts.
I: If it comes up to you, just throw it out there.
S: I can send you some stuff from like, I see this happening on my pages every day. Like Socrates or Plato or like all these people or Doctor Freud.
I: That would be amazing if you were …
S: It’s some amazing stuff that, like these are all on my feeds that I hit “Like” on. But, it talks about like, all this stuff in different ways. And they, it’s just …
I: Are they posted on your Facebook page?
S: No, it’s just my feed.
S: Various feeds. And so, you know, as it comes, I’ll just forward it to you.
I: Absolutely. I’d love to see these.
S: OK. And, some of them I save and some of them I don’t. If I have any on my computer, I’ll just, yeah, because, and I’ll, it’ll help your, I think it’ll help your [research].
I: I think it will help this project a lot. Um, and just having information too, to know more about …
S: I mean, and you could hear me say, as a healer, like, when you hear other people that are famous, it’s almost kinda almost …
I: Well, it’s refreshing, I mean, it’s refreshing to get it from your perspective because, as you described it, a doctor is going to tell me something that I …
S: And I was at a doctor, um. OK, there’s something I wanna say and it’s all coming out at once, I was …
I: Take your time, we’re in no rush.
S: My, my chiropractor sent me to a doctor because she’s like, “I can’t prescribe medication but I really think, to kick this out of your system, we want to prescribe this,” and she told me that, what she wanted. So, she sends me to a person I know and a person that she knows and this doctor was just, she was a medical doctor but a quack. I’m just like, “You don’t know anything.” And, I’m like, she was testing, which is fine, testing me for all these, testing my blood, testing my liver and all this. And, she’s like, “Well, I don’t know what to do.” I’m like, “What about that medication, you know, doctor- she suggested?” “Well, I could put you on that and I think that’s the best thing, but I just don’t know what’s going on with you.” And, I’m like, it’s all like going back to the medieval days for me. It’s like, I’m like, I spent time with my doctor and we’ve been treating this and we want results to just kick it. But, she’s all, doctors have that ego. Like, “I’m God, I know better than anyone.” And it’s like, so I took the drugs. Literally, it happened Friday night until Sunday evening, I was in-, I was incapacitated. I’ve, I’ve never been, I can’t call it sick, I think I was in a coma. I could, the only thing I could do was get up to pee, I couldn’t even get water. It was, and what happened was, what I researched and what my chiropractor kind of already knew, she’s pretty intuitive, is it killed a parasite in my liver and it caused that reaction. Now had I known in ad-, had I actually known this in advance, and in hindsight, there’s a tea you can drink that’ll counter that and I would have been fine. But, you only know this stuff through experience. It’s who’s, and this is funny ’cause my mom was the same way. She would educate the doctors. And all my, all my uncles are doctors. Um, so my mom had, she, she was gluten-free later on in life, um, because of her, she had rheumatoid arthritis. But, mostly she, she got on a healthy diet because of the arthritis. She would educate my uncles in treating their patients. She’s like, they would argue with her, “This, this is not what we were, the medical books say this.” And, finally, like after, I was, I was a little kid going to [city], that’s where my cousins are. And that one year, they just switched. My mom was just so beside herself, “I’ve been saying this until I’m blue in the face, what made you see the light?” They’re like, “Our patients are demanding it from me.” And so I had to study it and learn that food is more important than medicine in a lot of cases. You know, you’ll never get them. They’re my uncles and I love, they, but they’ll never say that out loud. Because that’s just, it’s their careers and the, it’s the insurance companies. And I’m, I’m doing all of this out of pocket because my insurance company won’t pay for what I had. I got rid of my insurance. They wouldn’t pay for it.
I: Why wouldn’t the insurance company cover that?
S: They won’t pay for a chiropractor, they won’t pay for a nutritionist. They’re just something society doesn’t deem as important. Some insurance companies will. I have Blue Cross. And after, after several years of, after paying my, you know, paying my doctors out of pocket, I’m just, why have insurance? You know, and so my dad would get back because he’s an attorney, he was an attorney. And he would just, so he would pay it for me. And when he died, I was, just would, my dad, he cancel. [ slight laugh ] Because he had, but that’s because, how he was raised. They were taught growing up, is, you know, from grandparents and aunts and uncles that grew up in the Depression. You need insurance. You need this. You need that. And, this is how you live. You live in fear of the what-ifs.
I: That’s going to happen, you may need this.
S: And I, and what helped me change that attitude, because that’s how I was raised by these people. My dad, my grandfather, what changed, my mom wasn’t like that. She was the artist. She did a lot of coppers, but she did a lot of painting as well. But, um, that’s what she did later on in life. Artistic career. And then she became a realtor in the 80s. And that’s what she did until she, and then she kind of retired after all that, when they moved to [a new location]. But, um, so that’s what she did. Where was I going? I forgot what I was talking about.
I: We were discussing, where did we, we started with celiac umbrella term, and, last little blurb. Insurance. Why did you need insurance?
S: And so, I guess we were on a, a track. I was just saying that, you know, we train our society to grow up in these fear modes. I feel that the fear that you have like, that creates the fear of the what-ifs creates more of that happening. Like, what if my house flooded or what if there’s a tornado? Well, those are the people that attract that most to them. And I’ve known, just from my own experience that if you were to ask me this 10 years ago.
I: Is there a specific experience that jumps out to you?
S: Of me creating my own situation?
I: Or seeing it in someone else?
S: In my dad, yeah. He would create these fears and they would happen. Just like, if I didn’t have insurance then I’ll, then you look at someone like me who grew up in the same family, and I don’t have insurance, and even my doctor, my chiropractor, she doesn’t need. She’s like, “Sam, if I could live like you, I would. But, I still have that fear of society. And if you can let that go, if something happens, it happens.” But, if not, it’s, I, it’s like ever since I saw the movie, and I don’t, I’m just gonna throw this at you. I saw that movie, this is as I was going to join [a university degree program] and I, I didn’t want to bring up the girlfriend. She was a [student in the degree program]. Um, but she, she and I were going through a, insane shit. I won’t go into it, but if we …
I: I want you to know that this is a safe place, so if you want to go on a tangent, throw something out there, go for it.
S: Yeah, you could write my life story later, but I, this will [ laughs ], her and I were going through a, um, emotional upheaval that we’re told, um, ’cause we didn’t know what to do. I mean like, shit was, shit was flying around the room. It was like that kind of, like a, um, looking back was an emotional thing. It manifested itself in, there’s so much we don’t know. [ laughs ] That’s another conversation.
I: That’s another conversation for another project.
S: A major conversation. Um, it’s a major conversation. Not because it was personal but because um, but that kind of tied into it as far as, um, her and I saw this movie. I think it was separately because we were breaking up at the time.
I: What was the title?
S: It’s a famous movie. You’ll know it when I tell you it. It came, I can’t think of it. Not The Secret , the one before? [ pause ] But, anyway, it’s this movie, before I’ll, I’ll get it to you.
I: We’ll figure it out after …
S: If I IMDBed [Internet Movie Data Base] it, I’d find it. It’s a documentary. And once I saw that documentary, after this documentary, I’m like, this is stuff I knew in high school. But I would never say it because people thought I was, would think I was crazy. These were scientists that came up with all this stuff. Not gluten people, right? Um, and in the second half of the movie, it was just like, it was more story with Marlene [ sic ] Matlin in it. And, you know with, the deaf one. And you see her like taking all the drugs in her medicine cabinet and throwing them out because it was, it was her realizing that power not to need that. And I used to take Advil all the time for headaches or whatever. Especially going through [university], you understand how that is. I’m just like, you know what, I had such a rush of, after watching that movie, I took, I even threw out my Advils, and I’ve never needed them since. And so, that’s kind of, that’s an example of where I don’t need that insurance, I don’t have to go buy it. And, if I ever do have a headache, which is probably like three times in that eight-year, nine-year period, very minor.
I: Let’s tie it back to the food issue, because one of the theories running around out there is because so much of the food we consume is this genetically altered …
S: Monsanto.
I: Monsanto. There’s, corn is completely different, the amount of steroids and things they put into beer and chicken. Even the treatment of animals is a hot topic issue. It’s all over the place. How much of that do you think ties into these fears that we have? What I put into my body?
S: I think a lot of it does. The people who are against Monsanto and the pro-organic, whenever you’re against something you create a fear. So if I’m saying I’m against, um, non-organic food or I’m against GMOs, well then, you create that fear that these things are bad. I’m not saying they’re bad or good because I don’t know. We haven’t done enough tests on Monsanto. But by creating that fear even we, it’ll even get in my head that it’s, well, I’ve got to be careful I don’t buy GMO. Then, the more I create that myself, I limit the foods I can’t eat. You know, at least in my mind. In reality, could I eat Monsanto and probably be fine? Probably. But, if I knew it was and I was eating it, that would exacerbate the food. I mean, that would exacerbate the food I’m putting into my system. And, I’ve noticed within myself, if I’m focusing on negativity, if I’m pissed off at someone or in a situation where I’m pissed off and not eating, it’s just, I’m gonna, I’m gonna have diarrhea that night. It won’t be the next day, it’ll just go right through me because I’m eating with anger. Doesn’t that make sense?
S: I mean, I’m not sure how much you’re into this.
I: No, this is all good, I mean, we’ll cycle back in and through.
S: And these are all things I’ve learned since, it was either taught to me sometimes or either, but mostly, the way I’ve learned is, and I’ve always thought this was odd, especially going through [university], I would have a revelation or an epiphany or I would have the experience, learn that way. And then, maybe like a week, a month, a year later or two years later, I would have the validation. I mean like, why is that happening? But, I realized because the, it comes from a book, it doesn’t have as much power as coming from me having the experience first. And then I’d have the validation later. Because, I think, I’ve grown up very skeptical of all this shit, trust me. Even though my mom was very into health food, you know, tried to instill that into her children, it was still kinda feel like, oh, that’s just mom. That’s how we are with our parents. So, but because of my own experience, I’ve been able to develop my own ways of doing things, whereas if someone tells me something, then I’m just kind of like a puppet. Being pushed around and the, with the food industry, with Monsanto, people saying pros and cons. And as much as I try to stay out of that, you still see it on Facebook. It’s because of the places that I hit “Like” on.
I: Getting back to the experiences, I wanna circle back into your background, um, how old were you when you first …
S: Had stomach stuff?
S: [ pause ] Here’s where it gets interesting. I believe it was, if I could trace back all the symptoms, I believe it was probably like, when I was, um, probably in my 20s, maybe 21, 22. I remember talking to a friend on the phone, going and asking like, “Don’t you just feel like wiped out after you go to the bathroom? You know have a, have a bowel movement?” And he’s like, “No.” ’Cause I used to work out a lot back then and I’m like, and that happens to me now where I’d have a bowel movement and I’d just, I’d just be exhausted. I’d have to take a nap. I mean, literally, take a nap. Um, and, but no one, who’s to know back then? No one talked about any of this stuff so I wasn’t aware that’s what’s going on. So, I would say probably around 21 is when I felt it started. Um, now, going back before that, when I was in college at [a western university], 18, 19, 20, or maybe even in high school, I drank a lot. And I’m talking Jack Daniels in one hand, Bacardi in another and have a couple of beers for chasers. And the reason I elected to be social, it was because, it actually didn’t make me drunk back then. I would be the designated driver and I was drinking that much. Because people were like, “You’re, you’re sober.” After a while, I stopped arguing with them. My blood alcohol content probably didn’t say that, I could function, yeah. So, I just drank because it was the thing to be social. I think, in the physical world as opposed to the emotional world, I believe that is what helped destroy some of the good lining in my stomach, the bacterias. And I believe that’s where it started. Because one, every year in the spring, this time of year, March, April, May, a month, I would have a stomach issue. And that started so, so the symptoms started when I was 21 with being exhausted after the bowel movement. You know, like, 25, I’m back from school living here. 25, 26, I would notice, like every year, for about four or five years I would have these issues of one-month stomach issues. And that’s exactly what I’m currently going through. Um, and then like gradually, I would have like acid reflux, and so I would take whatever people would, and it always exacerbated with alcohol. So finally, and that’s why I don’t drink too much. I can go six months to a year without drinking a drop. You know, it just depends where I’m at. Because, I know it’s going to re-effect it. Just from experience, I try not to put the thought in there and it doesn’t.
I: How’d that change socially? Did you notice a change at all? Was there?
S: Socially, I had to make, I had to make the, I had to make this decision to stop drinking. And when that happens people feel, like you think your friends are just like, “Oh, c’mon,” it’s really like a tug of war. It’s like, why is my drinking affecting you? In me going through that, it made me a stronger person. In that, like, per-, pressure way. And even the gluten stuff is like, some friends of mine I can’t even be gluten-free around. It’s like, I won’t even eat dinner with you. Sorry. ’Cause it’s like, especially if I go over to their house …
I: What is that conversation like?
S: Most of my friends know now, but like initially, certain friends, especially the ones from [a western university] that aren’t sensitive, mostly guy friends: “You’re fucking weird or pussy,” stuff like that. It’s like, it’s kinda like, “Oh, c’mon.” And I’ll even drink water that doesn’t have ice in it. I thought my mom was crazy growing up, doing that. I couldn’t do that. But my doctor even said, “Don’t drink water with ice in it because what it does is, it makes your stomach and your system work that much harder to digest the coldness and make it warm, room temperature again.” So, if you already have digestive issues, and I take …
I: Don’t they say, in certain diets, that if you want to lose weight you should drink cold water? One of those little tricks that they tell you? Same with eating peppers.
S: Peppers actually do help me. Certain peppers with the intestinal lining, which wore away gradually due to, they call it leaky gut syndrome. And like, all the toxins within your stool with, be passing through. You’re supposed to absorb the good stuff and the toxins go out. Well, all the toxins were getting into my blood because the gut lining was so thin it started going through the wall. That’s what they call a leaky gut, which was contributing to the, um, chronic fatigue. Which I, and I don’t like to label it but, for me, it was chronic fatigue. Back to what your question was, I’m sorry.
I: How it affected you socially.
S: Um, so socially I, I don’t, I don’t go to bars and if do it’s tough.
I: What specifically? Is it just the …
S: Because one, I’m not drinking this. But two, because most bar food is fricking fried and it’s got gluten in it. And, even if it’s not fried, it’s not the most healthy, you know? So, my choices are eat beforehand, meet people, sit around and talk while they eat and drink and, you know, you can still have fun. Like, I have friends that are alcoholics who, you can still have fun and, but you can’t, I mean, I just gradually stopped going. Dwindling, so socially, it’s like, to answer your question it’s, I’ll just tell you, I literally, I haven’t lost friends, but I don’t hang out with them as much as I used to. I mean, not nearly as much. I was out every night. Now, it’s sometimes once a month.
I: And that’s not something one can find, almost like a support group or …
S: And, it’s one of the things I was just gonna address which is, it’s almost easier to say, “I’m an alcoholic” than “I’m gluten-free.” It’s all easier to say, “I’m an alcoholic” than say “I can’t drink alcohol because I choose to not drink alcohol with you.” Because when you’re an alcoholic, people like give you that respect. That just is. But when you’re, when you make a choice for your health, to eliminate something out of your diet, it’s like, it really affects other people. And I had to learn that that’s not my issue. Just because you want to drag me into your hell doesn’t mean that, and I had to learn that, how to be strong enough, to stand up for my own health, really. And that’s what it boiled down to. I mean, literally, and one of the guys I’m talking about, kinda referring to is, I see him once every year or six months now. We used to hang out all the time. But because he couldn’t let go of that, and even with his daughter, she, he had a three-year-old who’s had issues with gluten. And I, we were out at dinner and they order it special, non-dairy because no dairy ties in with gluten. As well as alcohol and all that stuff, sugar. Um, and he, he was getting on her, and his family’s practicing medicine too. His dad and uncles are doctors. The words that came out of his mouth were, “I want her to eat normal cheese because I don’t like it.” So, I can live my life and I’m just thinking, and I don’t like, I don’t like to chastise my friends ’cause that’s their choice how they want to raise their family and live. ’Cause, I don’t want to do to him what they’d do to me basically. But when they say that, it’s like you’d rather put your daughter on drugs and medicine that might affect her later on, at three years old, than just get her off gluten for a while? And have her just be healthy? So, I don’t know, it’s for me. And I see her face too, it’s the irony of that. And it’s kinda like that lady, Louise Hay, who I think it was from 73, 75, she made the decision, not because of her health, because of her health, but not because she was gluten intolerant or anything like that. It was a decision before it was even popular to do no sugar, no dairy, no alcohol, and no gluten. I think no caffeine too, like there’s those kind of four or five things that could kind of contribute to the issues. She’s almost 90 right now. I mean, and that’s amazing in our society and she’s got her own publishing company.
I: Especially when it is not with the assistance of a plastic heart. Or something that has been artificially put in.
S: Exactly, so, and there’s probably everyone for her age, there’s probably other people that are smokers and, you know, do drugs all the time. So, who knows? I mean, I’m just saying, yeah right. Anyway. All these things they’ve found for cures have also proven harmful to your system. So, she actually wanted to learn how to be able to get out of bed during the day because of her arthritis. Because of the gluten at the time. The more she looked into the diet, the more she researched, she learned gluten could affect it all. Back then, all it was was rice, bread, and that’s it. It’s better for me to have brown rice than white because of the nutrients. In the food aspect, I’ve gotten to points where I’m like, I don’t want to eat any more. Like, literally, I, my situation is probably different than others. I eat out almost all the time. I will eat like raw foods, which I’ve found is much better on my system besides processed foods.
I: What is your favorite kind of food?
S: I don’t eat pizza anymore, unless it’s from Picasso’s because they do a great non-gluten, non-dairy pizza that tastes great.
I: Were you a big pizza buff before that?
S: I ate a lot of pizza. I knew it wasn’t good for you but I did it. I mean, it’s cheap. I would eat Taco Bell a lot, and there’s things that I would do in college that I would only do in college that I wouldn’t do when I was out. And that was smoke pot. Although, I didn’t really inhale. As soon as I graduated, I was done. If you put something in your system, make sure it’s good. My dad connected that with gourmet. My mom, she said organic. I like seafood. Just have to be careful it doesn’t have a thickened sauce with flour. Afterwards, no pizza. The dairy will affect me as much as the gluten, if not more. Sugar’s been the hardest one. I can cut it out and be cold turkey. But the little increments I can’t do. Sugar also contributes to cancer. And, they’d rather fight cancer with chemo than do it the right way. The candida was the first thing that we addressed with my treatments. And that was over the course of maybe six months to eight months. Maybe longer, I don’t know. This is my memory. But then after that, we started treating me for parasites. Whether it morphed or it’s just, I think she was doing the stages.
I: And this is when you were seeing the doctor?
S: The chiropractor. And this is all out of pocket. I was seeing and what literally brought, OK, I was seeing her and she got me to a place where I was stable. I stopped seeing her for about three years. Um, I came back to her. It was hard for me to come back to her, not because I didn’t like her, but because, um, I had gotten to a point where I, I would wake up in the morning, go to the bathroom, like you know take a shit, and I was exhausted because like, literally, it was my gut was leaking. So like all the toxins were coming out through and it would burn and it, it was like draining. I learned that your stomach is your power center, it’s where you hold most of your power, and if that’s affected, you’re wiped out. That’s from my experience, I found out research that proves it, but I, or otherwise I’m just telling you what someone else said. So, I’d wake up in the morning, take a shit, ah fuck, go back to bed. I’d get up. I’m like, my God, I’ve gotta eat. I, get this, this was going on for weeks. I’d get up, go downstairs, grab something out of the fridge or out of a cupboard, eat some food, that would wear me out. It’s like it’s wipe me the fuck out. And I would go back to bed. Then I would take a shit. Like, this was throughout the whole day. I would stare at the ceiling looking, thinking, really start talking to God, “Why the fuck am I here? If you want me to, like, what do you want me to do?” It’s like, it’s like you have that conversation and it’s like, just kill me or take me, you know, because I don’t know if I can, if I can’t function, then what’s my purpose here? I can write about this, but I can’t when I’m exhausted. So, I got to this point where I’m just like I have to go back to this doctor. Literally, like, she won’t say anything. She doesn’t want to alarm me, and she knows me, ’cause like, we had this understanding. It’s OK, don’t tell me. Um, literally, she had to treat me for parasites. For all this stuff and she would gradually do it, without explaining to me the process. And I never asked. I didn’t care, because it’s like I don’t want this part to interfere with this part of, you know? If that makes sense? The mind and the stomach. Um, so I started seeing her and literally it was like, but I knew I was ready to die. And she’s like, “You, you’ve had this for a long time” and she’s like “We’re past the point of me treating this for you. You just felt good and stopped seeing me.” OK, I get it. I started seeing her again and like stage by stage we’re treating me for allergies. For gluten allergies, for, I actually started getting some arthritis symptoms here and there and they’d go away once she started treating for, um, for arthritis. She treated me for leaky gut. But you can’t do it all at once. Gradually you can, but she wanted to treat one thing at a time, to make sure it was working. And it was, but, you like, she comes from an engineering background before she became a chiropractor. Intuitive. Nutritional. So we stated with candida, then we would treat me for parasites. Then we would treat me for allergies. Food allergies. And then something emotional would happen, and it would be just like, I’d be back at square one. Not square one, but it felt like I was back at square one. And, when that emotional situation would happen, I can’t remember specifically what incidents back then, but something would set it off and I would either get pissed or all my symptoms started coming back. It can be a physical or emotional stress. My triggers are people attacking me with words. It goes right to my gut and I haven’t gotten past that sensitivity, especially when it involves anger. So, I understand the emotional part. Like people aren’t making this stuff up. How can you agree with one part they say and not the other? People are nuts, man. It’s like you have to do what works for you. When you’re living in a hole where everyone wants to tell you what to do, they don’t know your system. The only one who knows it and can empower it is you. I’ve learned to be stronger, to be able to walk with more confidence as opposed to going around life getting pushed around like a pinball machine. No matter what kind of people try to steer me off course. It’s harder to talk to myself because then I have to listen to this shit. It’s easier for me to explain it to people. I get that. More full life. More satisfaction in life. We always want to be better than our parents and have our children better than us. I’m more in tune with what I’m doing. I’d rather not have gluten at all and cheat after a while. When you have too much of the same food, eventually, your body will reject it because you’re not, it’s just the tolerance for it decreases. Just like the antibiotic. I would take antibiotics to get rid of lingering stuff. I didn’t know there were natural cures. My mom would always say, “All the doctors I go to tell me, only do antibiotics if it’s life or death.” Why wouldn’t they have medicine if it wasn’t good for you? Immunity. I’d done way too much. If I had a fever, I’d take a hot bath, then I’d start throwing up and that would be enough to kick the system. It’d burn my stomach. It was alcohol, it was antibiotics, it was whatever was destroying the lining. I didn’t learn how to express my emotions as a child. We hold our emotions in our gut.
[The interview continued but the participant addressed content not related to the central research question.]
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Caitlin mcmullin.
Department of Politics & Society, Aalborg University, Aalborg, Denmark
While there is a vast literature that considers the collection and analysis of qualitative data, there has been limited attention to audio transcription as part of this process. In this paper, I address this gap by discussing the main considerations, challenges and implications of audio transcription for qualitative research on the third sector. I present a framework for conducting audio transcription for researchers and transcribers, as well as recommendations for writing up transcription in qualitative research articles.
The field of third sector studies is inherently interdisciplinary, with studies from political science, management, sociology and social work, among others. Within the field of research, a large percentage (between 40–80%) of studies employ qualitative methods such as interviews, focus groups and ethnographic observations (von Schnurbein et al., 2018 ). In order to ensure rigor, qualitative researchers devote considerable time to developing interview guides, consent forms and coding frameworks. While there is a vast literature that considers the collection and the analysis of qualitative data, there has been comparatively limited attention paid to audio transcription, which is the conversion of recorded audio material into a written form that can be analyzed. Despite advances made in qualitative methodologies and increasing attention to positionality, subjectivity and reliability in qualitative data analysis, the transcription of interviews and focus groups is often presented uncritically as a direct conversion of recorded audio to text. As technology to facilitate transcription improves, many researchers have shifted to using voice-to-text software and companies that employ AI rather than human transcription. These technological advances in transcription, along with shifts in the way that research is undertaken (for example, increasingly via video conferencing as a result of the COVID-19 pandemic), mean that the need to critically reflect upon the place of transcription in third sector research is more urgent.
In this article, I explore the place of transcription in qualitative research, with a focus on the importance of this process for third sector researchers. The article is structured as follows. First, I review the qualitative methods literature on audio transcription and the key themes that arise. Next, I report on a review undertaken of recent qualitative research articles in Voluntas and the way that authors discuss transcription in these articles. Finally, I propose a framework for qualitative third sector researchers to include transcription as part of their research design and elements to consider in including descriptions of the transcription process in writing up qualitative research.
At a basic level, transcription refers to the transformation of recorded audio (usually spoken word) into a written form that can be used to analyze a particular phenomenon or event (Duranti, 2006 ). For many qualitative researchers, transcription has become a fairly taken-for-granted aspect of the research process. In this section, I review the methods literature on the process of audio (and video) transcription as part of qualitative research on the third sector, focusing on three key areas—how transcription is undertaken, epistemological and ethical considerations, and the role of technology.
While quantitative research seeks to explain, generalize and predict patterns through the analysis of variables, qualitative research questions are more interested in understanding and interpreting the socially constructed world around us (Bryman, 2016 ). This means that data are collected through documents, observation and interviews, and the latter are often recorded in order to analyze these as documents. For third sector research, recordings are most commonly made of interviews and focus groups, but may also be of meetings, events and other activities to ensure that researchers do not have to rely on their power of recall or scribbled notes.
Transcription is a notoriously time-consuming and often tedious task which can take between three hours and over eight hours to transcribe one hour of audio, depending on typing speed. Transcription is not, however, a mechanical process where the written document becomes an objective record of the event—indeed, written text varies from the spoken word in terms of syntax, word choice and accepted grammar (Davidson, 2009 ). The transcriber therefore has to make subjective decisions throughout about what to include (or not), whether to correct mistakes and edit grammar and repetitions. This has been described as a spectrum between “naturalized” transcription (or “intelligent verbatim”) which adapts the oral to written norms, and “denaturalized” transcription (“full verbatim”), where everything is left in, including utterances, mistakes, repetitions and all grammatical errors (Bucholtz, 2000 ).
While some contend that denaturalized transcription is more ‘accurate’, the same can equally be argued for naturalized, as it allows the transcriber to omit occasions when, for instance, an individual mis-speaks and corrects themselves, thereby allowing the transcriber to record closer to what was intended and how the interviewee might have portrayed themselves in a written form. As Lapadat ( 2000 , p. 206) explains, “Spoken language is structured and accomplished differently than written text, so when talk is re-presented as written text, it is not surprising that readers draw on their knowledge of written language to evaluate it.” Other nonverbal cues, such as laughter, tone of voice (e.g. sarcasm, frustration, emphasis) and the use or omission of punctuation, can also drastically alter the meaning or intention of what an individual says. In addition, the transcriber must make decisions about how much contextual information to include, such as interruptions, crosstalk and inaudible segments (Lapadat, 2000 ). Because of the range of types of research that employ qualitative methods, there is no single set of rules for transcription but rather these decisions must be based on the research questions and approach.
Because the researcher (or external transcriber) must make these decisions as they translate audio into written text, transcription is an inherently interpretative and political act, influenced by the transcriber’s own assumptions and biases (Jaffe, 2007 ). Every choice that the transcriber makes therefore shapes how the research participant is portrayed and determines what knowledge or information is relevant and valuable and what is not. Indeed, two transcribers may hear differently and select relevant spoken material differently (Stelma & Cameron, 2007 ). As Davidson ( 2009 ) notes (and as I explore in further detail in the next section), despite being a highly interpretive process, transcription is frequently depicted using positivist norms of knowledge creation.
Transcription also involves potential ethical considerations and dilemmas. When working with disadvantaged communities, deciding how to depict research participants in written text can highlight the challenges of ethical representation. As Kvale ( 1996 , pp. 172–3) notes, “Be mindful that the publication of incoherent and repetitive verbatim interview transcripts may involve an unethical stigmatization of specific persons or groups of people”. Oliver et al. ( 2005 ) similarly demonstrate how transcribers must make decisions about how to represent participants’ use of slang, colloquialisms and accents in ways that are accurate but also respectful of the respondent’s intended meaning. Some researchers decide to send finished transcriptions to interviewees for approval in order to honor commitments to fully informed consent, to ensure transcription accuracy or in some cases as a means to address the balance of power between the researcher and interviewee. As Mero-Jaffe ( 2011 ) describes, on the one hand, this may empower interviewees to control the way that they are portrayed in the research. On the other hand, Mero-Jaffe found that seeking transcript approval from interviewees sometimes increased their embarrassment at the way that their statements appear in text. This may be especially problematic with full verbatim transcriptions.
As technology improves and AI becomes increasingly able to create written text from recorded audio, researchers might ask—is human transcription even necessary? New options in Computer Assisted Qualitative Data Analysis Software (CAQDAS) such as NVivo, Atlas.ti and MAXQDA give qualitative researchers the option to forgo audio-to-text transcription altogether, and instead engage in live coding of audio or video files. Using this method, researchers first watch or listen to recordings to code for nonverbal cues, followed by a stage of note taking and coding based on pre-defined themes and matching these with time codes and nonverbal cues. Finally, researchers then transcribe specific quotes of interest from the recording (Parameswaran et al., 2020 ). This process may improve immersion in the data and allow researchers to account for dynamics that are often lost in complete audio-to-text transcription, such as group interactions and nonverbal communication.
There is a considerable need to develop the evidence base on the role of AI in transcription for qualitative research, with many important publications that consider the issue (e.g. Gibbs et al., 2002 ; Markle et al., 2011 ) out-of-date given the swift rate of change in AI technologies. Over the last few years, voice and speech recognition technologies have improved dramatically and may now be able to provide researchers with “good enough” first drafts of transcripts (Bokhove & Downey, 2018 ), providing certain conditions are in place (e.g. limited number of speakers and excellent audio quality). Using these technologies can save researchers time and money. As a result of the COVID-19 pandemic, many qualitative researchers are now undertaking interviews over Zoom or other video conferencing apps, which is a trend that may continue beyond the pandemic (Dodds & Hess, 2020 ). Zoom offers AI live transcription options, which benefits from the generally clear audio quality of a video conference, compared to in-person interviews where there is a greater chance of audio interference and background noise that may be undetected in the moment.
While AI may offer a cheaper and quicker alternative to human transcription, these transcripts will need to be meticulously checked by the researcher to ensure accuracy, fill in missing details or edit for context and readability. Using cloud-based AI transcription services also raises potential ethical concerns about data protection and confidentiality (Da Silva, 2021 ). There are numerous subjective decisions made in the course of creating a transcription that AI is unable to process, such as where to include punctuation, which words to include or exclude (such as filler words, hesitations, etc.) and how to denote things such as interruptions, hesitations and nonverbal cues. Voice-to-text software is also generally less accurate in discerning multiple voices or different accents (Bokhove & Downey, 2018 ). Several studies have considered how researchers/transcribers can use voice recognition software to listen and repeat the spoken text of an interview into software as a shortcut to traditional typing transcription (Matheson, 2007 ; Tilley, 2003 ), but the above shortcomings and cautions apply.
Transcription matters for third sector research because qualitative research methodologies make up a large percentage of studies undertaken on nonprofits—as much as 40–80% of research published in this field (Igalla et al., 2019 ; Laurett & Ferreira, 2018 ; von Schnurbein et al., 2018 ). Audio transcription is particularly important for third sector research for several reasons. In conducting qualitative research (which aims to produce rich, rigorous description) and as third sector researchers (who study organizations that seek to improve society and who may be working with traditionally disenfranchised or disadvantaged communities), we have a particular ethical obligation to ensure that our research provides an accurate depiction of our participants’ lives and the organizations with which they are involved.
However, transcription is perhaps the most underacknowledged aspect of the qualitative research process, and this is also evident in the way that transcription is discussed in research articles. In order to survey the current depiction of the transcription process in third sector research, I undertook a review of the 212 most recent papers in Voluntas that include the word ‘interview’ to explore how qualitative research articles discuss transcription as part of their methodology. 1 Of these papers, 79 were deemed not applicable (because they were quantitative research papers that mentioned interviews in another context, or used the word interview to denote the administering of a structured questionnaire, or systematic review papers reporting on other research). This left 133 articles which were analyzed to explore the extent to which transcription was described—if at all—as part of the research methodology. 2
The analysis (illustrated in Fig. 1 ) found that 41% of papers employing interviews as a research method did not mention transcription at all, while 11% mentioned transcripts but not the process of transcription. It was not clear from these whether or not interviews were recorded or if researchers relied upon written notes taken during interviews, or how information from the oral interview was converted into analyzable text. The most common discussion of transcription (19%) was a simple sentence along the lines of “interviews were recorded and transcribed”, while 26% gave some further information including who undertook the transcription (the researcher(s), a research assistant or a commercial company) or that the interviews were transcribed ‘verbatim’ (with none explaining what they mean by this term). These findings are not dissimilar to a study of qualitative research in nursing, where it was found that 66% of articles reporting solely that interviews were transcribed, and the remaining articles indicated only “full” or “verbatim” to clarify the process (Wellard & McKenna, 2001 ). I also surveyed the first authors’ departmental affiliations/field of study to gauge any differences between academic fields (Table (Table1) 1 ) although there were not considerable differences.
Transcription in Voluntas qualitative articles
Description of transcription and field of first authors
Field | Transcription not discussed or passive mention of transcripts | Discussion of transcription | Interviews not recorded | Total |
---|---|---|---|---|
Business, management & economics | 13 | 17 | 1 | 31 |
42% | 55% | 3% | ||
Political science and international development | 18 | 8 | 0 | 26 |
69% | 31% | |||
Sociology | 8 | 12 | 0 | 20 |
40% | 60% | |||
Public policy & public administration | 12 | 6 | 0 | 18 |
67% | 33% | |||
Social work | 4 | 7 | 1 | 12 |
33% | 58% | 8% | ||
Other or field unclear | 14 | 10 | 2 | 26 |
54% | 38% | 8% | ||
The fact that over half of the Voluntas articles using interviews as a research method make no mention of the transcription process is a problem for transparency in qualitative research. This tendency may be a symptom of the fact that qualitative researchers face greater challenges in academic publishing that disadvantage longer from, in-depth qualitative research to fit within prescribed word limits (Moravcsik, 2014 ). In researchers’ efforts to ensure that qualitative research meets requirements for transparency, rigor and reliability, efforts are concentrated on descriptions of case and participant selection and data analysis while transcription as the conduit between data collection and analysis remains unproblematized. This emphasis reflects the growing influence of positivist views of validity. Ignoring the subjective decisions and theoretical perspectives that determine the creation of a transcript therefore inadvertently presupposes a positivist stance on the objective nature of data which is inconsistent with qualitative methodologies.
As shown in the previous section, there is currently widespread neglect of transcription as part of interpretive qualitative research on the third sector. In this section, I present key elements for third sector researchers to consider in regard to transcription, both to ensure rigor as part of the qualitative research process and in writing up qualitative research, drawing upon examples of good practice from previous research in Voluntas. These recommendations are based on a review of the literature as well as my personal experience as a qualitative researcher, qualitative methods teacher, and professional transcriber.
All decisions regarding research design, data collection and data management should be made at the beginning of a qualitative research project when applying for ethical/IRB approval from one’s university, and this includes transcription. At this stage, the researcher should confirm with their university whether they have a budget for transcription. Undertaking ethical qualitative research means ensuring standards of transparency, informed consent, confidentiality and protection of the data obtained from the research (Blaxter et al., 2001 ). Increasing concerns about data protection and legislation such as GDPR in the European Union have prompted many universities to institute strict rules about where research data can be stored. Some universities do not allow the use of certain cloud servers, such as Dropbox. These considerations should be taken into account when deciding how to undertake and record interviews (Da Silva, 2021 )—for instance, if you are recording using your mobile phone, it is important to be sure you know whether recordings automatically upload to the cloud. For this reason, it may be preferable to use a traditional digital recorder so you can manually download the files to your computer and know exactly where everything is saved.
Before transcription can even be considered, researchers must ensure that they have a suitable audio recording, which begins with the interview itself—whenever possible, interviews should be conducted in a quiet environment without background noise or interruptions and the audio recording device should be placed close enough to the respondent to pick up their voice clearly. While recording interviews with a mobile phone has become increasingly common and easy, using a backup recording device is always a good idea to mitigate against flat batteries, full memory cards, and human error. If recording with your mobile phone, it’s also critical to remember to place it on airplane mode/‘do not disturb’ for the duration of the interview.
While transcription from audio recordings is considered standard practice in qualitative research (Tracy, 2019 ), it is not the only way of undertaking qualitative interviews, and it is important to note that there are many reasons why it may not be desirable, appropriate or possible to record interviews at all. In relation to third sector research, this is most commonly the case in community-based research, research with political elites or research in challenging environments. One article explained that they did not record interviews because: “In sectors marked by fear, intimidation, and strong security apparatuses, recording devices would almost certainly have led to self-censorship and limited our access.” (Atia & Herrold, 2018 , p. 1046). Similarly, researchers may be unable to record in community settings because of sub-optimal recording conditions (e.g. meeting outside, noisy environments, etc.) or because using recording device makes participants uncomfortable or reinforces power relations between the researcher and participants (Quintanilha et al., 2015 ).
If researchers decide not to comprehensively transcribe recordings, or decide not to record qualitative fieldwork at all, this should be noted and explained in relation to methods. Other methods of notetaking and analysis may be more suited to certain types of ethnographic research, such as reflexive journaling (Halcomb & Davidson, 2006 ), or Systematic and Reflexive Interviewing and Reporting—a process by which a researcher and research assistant jointly interview participants and write their own reports that include observations and analyses, which are collaboratively analyzed (Loubere, 2017 ).
Traditionally, transcribers used foot pedals to play, rewind and fast forward tape recordings while they typed. Now that audio files are digital, several free and low cost programs are available (such as Express Scribe and oTranscribe) that let transcribers set up hot keys to perform the same actions without having to navigate away from their transcript document.
The degree of detail to include in transcripts should be decided upon before interviews are transcribed. This is important because previous research has demonstrated that the format selected for transcription significantly impacts how the researcher interprets the data (Mishler, 2003 ; Packer, 2017 ). There is no one best or “most accurate” style of transcription, but rather, a researcher should consider the particular theoretical background and research questions of the study in order to determine where on the scale of full verbatim to intelligent verbatim is most appropriate for the study. Because third sector research is most commonly associated with social science and business disciplines rather than linguistics, it will rarely be necessary or appropriate to employ the conventions of conversation analysis or extreme levels of denaturalized transcription (Bucholtz, 2000 ). Indeed, it might most frequently be appropriate to employ a version of naturalized/intelligent verbatim, so that any participants’ quotes included in written works are more ‘readable’ and do not include excessive repetitions or verbal fillers such as ‘um’.
If the researcher determines that naturalized or intelligent verbatim transcription is the most appropriate for their study, several considerations should be heeded in order to ensure that meaning is not distorted or lost. First, indications of laughter, nonverbal cues (such as sighs, huffs, finger-snaps, sobbing or even blowing raspberries) should be included if these convey important meaning. Other considerations of how to transcribe may be based more on personal preference and the ability to produce a document that is easily analyzable in the researcher’s chosen medium. For instance, wide margins on one side can be useful for researchers who choose to analyze their data on paper or in Microsoft Word, while other more flowing templates will work better to import into software such as NVivo. It can also be useful to include time stamps for unclear or inaudible statements, or at regular intervals (e.g. every minute) which makes it much easier to check a transcript against the original audio.
As discussed in the consideration of qualitative studies, the prevalence of the passive voice when reporting on transcription (i.e. “interviews were transcribed”) obscures the important distinction of who undertook the transcription. If the researcher transcribes recordings themselves, then it is generally acceptable to assume the coherence between the research approach and approach to transcription, as well as the researcher’s confidence that the written transcript is an accurate record of the event/interview that took place. If, however, the researchers choose to outsource transcription to a research assistant or commercial transcription company, then care should be taken to give detailed and thorough instructions about the elements described above. The researcher should also spot check transcripts for accuracy, fill in any missed words/inaudibles and ensure that the transcription document fulfils their expectations in regard to level of verbatim, style and formatting.
Ideally, transcribers should be hired who have specialist knowledge of the subject matter and familiarity with the accents or dialect of the speakers. They should be provided with a key information about the project, such as the research questions, important terms and acronyms. Lapadat ( 2000 ) provides several useful suggestions when hiring transcribers in order to ensure transcription quality and increase rigor. First, rather than fully outsourcing transcription, the researchers can transcribe some interviews or portions of interviews themselves in order to provide an example for transcribers and develop a transcription protocol. Another option when employing research assistants to transcribe interviews is to include them directly in the interviews (either as a co-interviewer or observer), so they have direct involvement in the research and context.
Finally, when working with external transcribers it can also be valuable to encourage transcribers to keep memos of the transcription process or contextual observations and impressions that may not come through in the written text. For instance, does the interviewee sound tired, frustrated, distracted or nervous? Does the interviewer interrupt the respondent frequently (which the transcriber may choose to edit for readability)? Or did the interview take place somewhere public, like a cafe, which may have made the respondent more guarded? Such information is often lost, particularly in projects that involve multiple research team members (for instance, a PI, multiple interviewers, research assistants and/or professional transcribers).
Due to limited space or word limits, it is not typically possible or desirable to include all of the above details in research articles. Instead, at a minimum, researchers should include who transcribed the audio recordings as part of a commitment to ethical and transparent qualitative research. If this was done by anyone other than the researchers, authors should ideally describe the measures taken to ensure accuracy (developing a protocol for transcribers, spot checking, proofreading, sending transcripts to interviewees if appropriate) and ethical considerations (such as data protection and confidentiality).
Second, researchers should indicate the type of transcription—whether selective (pulling out relevant quotes and themes, or transcribing just the ‘gist’), intelligent verbatim/naturalized or full verbatim/denaturalized. The choice of type of transcription should align to the researcher’s epistemological position and theoretical framework.
Finally, researchers should include any other subjective decision-making that took place during the transcription process, in much the same way that researchers are encouraged to be transparent about their subjectivity and positionality in undertaking interviews and analysis of qualitative data (McCorkel & Myers, 2003 ). This may include information about selecting the level of verbatim, working with external transcribers, feedback from interviewees on transcripts or efforts to ensure accuracy of transcripts and coherence with the research approach.
The following quotes provide good examples of how to write about transcription:
The interviews, which were conducted in the native language of the interviewees by six female Hebrew-Arabic-speaking interviewers, were recorded, translated, and transcribed verbatim. […] Immediately following the interview, each interviewer transcribed and translated her interviews into Hebrew. In this manner, we sought to achieve a translation that was as close as possible to the interviewer’s insights regarding the participants, and we regarded the interviewers as active agents in the creation of knowledge. (Yanay-Ventura et al., 2020 , p. 6) Three Spanish speaking investigators transcribed all of the interviews from audio recording devices, checked each other’s transcription for accuracy, and analyzed the interviews using thematic analysis (Braun & Clarke, 2006 ). The transcribers observed the focus groups and took notes on participants’ voices and other identifying traits to help the transcription process go more smoothly. Researchers aided the transcribers in this regard by asking participants at the beginning of the focus groups to introduce themselves using a pseudonym and briefly remark upon how they preferred to spend their time. (Schwingel et al., 2017 , p. 170)
In both of these examples, the authors treat the process of transcription as part of the broader research process, rather than as an automatic conversion of audio to text. While there is limited clarification about the type of transcription (beyond ‘verbatim’), the discussion of the subjective decision-making as part of the transcription process and acknowledgment of the agency of the individuals undertaking transcription increases transparency and therefore rigor.
Qualitative research can help us to understand some of the important issues impacting the third sector in ways that quantitative methods fall short of explaining, such as the ways that individuals and organizations make sense of public policy and societal challenges, how and why organizations design their services and activities in particular ways, and the intricacies of the relationships between boards, executives, staff and volunteers. Qualitative methods training stresses that an interpretivist epistemological position sees knowledge as socially constructed, yet transcription has slipped through the cracks of methodological examination in the process of creating and interpreting meaning.
In this short article, I sought to draw our attention to this important stage of qualitative data collection and analysis and call on third sector researchers to critically reflect upon transcription both in conducting research and in writing about it. I have focused primarily on the transcription of interviews , rather than focus groups or other multi-person events. All of the points raised in my framework transcription apply to these methods of data collection as well; however, there are further issues that need to be taken into consideration regarding focus groups that warrant further attention, such as the issues of power and accuracy of transcription when there are multiple people speaking and interrupting one another. Researchers employing multi-person recordings should therefore devote more time and consideration to transcription. Finally, technology continues to advance in the area of voice recognition, which may save researchers considerable time and/or money in transcription; however, I implore scholars to see transcription through an interpretivist rather than positivist lens, to ensure that the production of written transcripts is not approached as the creation of objective knowledge.
No funding was received to assist with the preparation of this manuscript.
The author declares that they have no conflict of interest.
1 While this approach may have obscured other methods that employ transcription, such as focus groups, the intention of the survey is to provide a snapshot illustration of transcription and qualitative methods rather than a systematic review.
2 Articles reviewed are listed in Appendix 1.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Transcription in qualitative research: a comprehensive guide for ux researchers, theertha raj.
August 15, 2024
As a UX researcher, you're likely familiar with the importance of gathering qualitative data through interviews, focus groups, and observational studies. But what happens after you've collected all that valuable audio or video content? That's where transcription for qualitative research comes into play.
In this article, we'll dive deep into the world of transcription, exploring its importance, types, and best practices for UX researchers.
Transcription in qualitative research is the process of converting spoken words or recorded audio into written text.
This crucial step allows researchers to analyze, code, and interpret the data collected during interviews, focus groups, or other qualitative research methods.
This written format makes it easier to review, share, and analyze the data, ultimately leading to more informed design choices and improved user experiences.
When it comes to transcription qualitative research, there are four main types that researchers should be aware of:
In qualitative research, intelligent verbatim transcription is often the preferred choice . This type of transcription strikes a balance between capturing the essence of the conversation and maintaining readability. It preserves the interviewee's words and intent while removing unnecessary filler words and false starts that can distract from the main content.
This type of transcription in qualitative research makes it easier to identify key themes, pain points, and user needs that can inform design decisions.
Thematic analysis , a common method used in qualitative research to identify patterns and themes within data, typically relies on intelligent verbatim transcription . It provides enough detail to capture the nuances of participants' responses while maintaining readability, making it ideal for identifying recurring themes and concepts.
The cost of transcription services for qualitative research can vary widely depending on factors such as turnaround time, audio quality, and the level of detail required. On average, professional qualitative transcription services may charge anywhere from $1 to $3 per audio minute for standard turnaround times (typically 3-5 business days).
For UX researchers working on time-sensitive projects, expedited services are available but often come at a premium, with prices potentially doubling or tripling.
It's worth noting that some of the best transcription services for qualitative research offer discounts for bulk orders or ongoing projects, which can be beneficial for researchers conducting multiple interviews or focus groups.
When considering the cost, it's important to weigh the value of professional qualitative research transcription services against the time and effort required to transcribe in-house. While DIY transcription might seem cost-effective, it can be time-consuming and may not yield the same level of accuracy as professional services.
Writing a transcript for qualitative research involves more than just typing out what you hear.
Here are some key steps to ensure your transcripts are accurate, useful, and ready for analysis:
Transcribing audio data in qualitative research is a process that requires careful consideration of several factors.
Before you begin transcribing, it's crucial to clearly understand the goals of your research project . Are you looking to gather specific user feedback on a product feature? Or are you conducting a broader study on user behavior and preferences? The aims of your project will influence the level of detail and focus required in your transcriptions.
For example, if you're researching user reactions to a new app interface, you might pay special attention to comments about the layout, navigation, and visual elements. On the other hand, if you're exploring user motivations and decision-making processes, you might focus more on capturing the reasoning and emotions behind their responses.
The level of detail in your transcriptions should align with your research goals and analysis methods. For most UX research projects, intelligent verbatim transcription provides an ideal balance of detail and readability. However, there may be instances where more or less detail is necessary.
If you're conducting a usability test and need to capture specific user actions along with their verbal feedback, you might include more detailed notes about their interactions with the product. Conversely, if you're more interested in high-level themes and general user sentiment, a slightly less detailed transcription might suffice.
Deciding who should handle the transcription is an important consideration. You have several options:
Context is crucial in qualitative research, and your transcripts should include relevant contextual details that aid in interpreting the data. This might include:
When it comes to representing data in your transcripts, clarity and consistency are key. Use a clear, consistent format for speaker labels (e.g., "Interviewer:", "Participant 1:"). Include time stamps at regular intervals or at the beginning of new topics. Consider using bold or italics to highlight key quotes or themes, but use this sparingly to maintain readability.
Here’s an example of what an AI-generated transcript looks like, with time-stamps and Speaker labels. The transcript also features text highlighted in green for positive responses, and blue for questions.
When conducting qualitative research, choosing the right transcription service is crucial for efficient data analysis. Here's a comparison of some popular transcription tools used in qualitative research:
NVivo is primarily a qualitative data analysis tool that offers transcription services as part of its feature set.
Price: NVivo's pricing is on the higher end, with users required to purchase blocks of transcription time (e.g., €80 for 10 hours).
Languages Supported: NVivo supports transcription in 42 languages.
Time taken: Specific time is not mentioned, but it's noted to be generally slower compared to other tools.
Accuracy: NVivo's transcription accuracy is lower compared to competitors, especially in noisy environments and with accents.
How much does NVivo transcription cost?
NVivo transcription costs around €80 for 10 hours of transcription time. The pricing structure is based on purchasing blocks of time rather than a subscription model.
Is NVivo transcription free?
No, NVivo transcription is not free. It requires purchasing transcription time.
Is NVivo good at transcription?
NVivo's transcription capabilities are considered less accurate compared to some competitors, especially in challenging audio conditions or with accented speech.
Is NVivo used for qualitative research?
Yes, NVivo is widely used for qualitative research, primarily as a data analysis tool. Its transcription feature is an additional service within this broader qualitative research platform.
Dovetail is a comprehensive research repository that includes transcription, coding, and data analysis features.
Price: Dovetail offers a free plan with 1 project per month, while paid plans start at $29 per user per month.
Languages Supported: Supports 41 languages, including Japanese, Finnish, Hindi, and Malay.
Time taken: Transcription is completed within minutes.
Accuracy: While generally considered accurate, specific accuracy metrics are not provided.
Looppanel is an AI-powered research repository tool that can do extremely accurate interview transcription for UX research, among other cool features. It’s special compared to other transcription services on this list, as it also lets you record your calls directly, and receive high-quality transcripts within mere minutes.
Price: Paid plans start at $30 per month, with a 15-day free trial available.
Features:
Languages Supported: Supports 8 languages, including English, Spanish, French, German, Italian, Portuguese, Dutch, and Hindi.
Time taken: Provides near-instant transcripts for recorded calls.
Accuracy: Looppanel boasts over 90% accuracy in transcription.
MAXQDA is a research analysis tool that’s more complex than the others, but is ideal for academics and scientists who need deep, detailed analysis. MAXQDA offers transcription services alongside qualitative analysis tools.
Price: Approximately $20 for 2 hours of transcription, with varying plans based on industry and use case.
Languages Supported: Supports over 48 languages.
Time taken: Transcription is completed within minutes.
Accuracy: Claims over 90% accuracy
Otter.ai is a transcription tool that doesn’t offer any in-app analysis features, unlike the other tools on this list.
Price: Offers a free tier with 300 minutes of transcription; paid plans start at $8.33 per month.
Features:
Languages Supported: Only English
Time taken: Within minutes
Accuracy: Generally high accuracy, especially in structured meeting environments.
Transcription in qualitative research can face several challenges:
How to do it:
What to include:
Speaker identification, time stamps, non-verbal cues (laughter, pauses, sighs), contextual information and consistent formatting
How to record for optimal use in your study:
What is the difference between transcription and translation in qualitative research?
Transcription involves converting spoken language into written text in the same language, while translation involves converting text from one language to another. In qualitative research, transcription is typically done first, followed by translation if the research is conducted in a language different from the one used for analysis.
What are the different types of transcription process?
The main types of transcription processes are:
1. Verbatim transcription (including all utterances and sounds) 2. Intelligent verbatim (removing fillers and false starts) 3. Edited transcription (cleaning up grammar and removing repetitions) 4. Phonetic transcription (using phonetic symbols to represent sounds)
What transcription services for qualitative data?
Transcription services for qualitative data include automated tools like NVivo, Dovetail, Looppanel, MAXQDA, and Otter.ai, as well as human transcription services. The choice depends on factors such as budget, accuracy requirements, and the complexity of the audio data.
Can I use NVivo for transcription?
Yes, you can use NVivo for transcription. However, it's important to note that while NVivo offers transcription services, it may not be as accurate or cost-effective as some alternatives, especially for large-scale projects or challenging audio conditions.
What is the alternative to NVivo transcription?
Alternatives to NVivo transcription include Dovetail, Looppanel, MAXQDA, and Otter.ai, each offering different features and pricing structures.
Is NVivo transcription worth it?
The value of NVivo transcription depends on your specific needs. While it integrates well with NVivo's analysis tools, its lower accuracy and higher price point may make it less appealing for some researchers.
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Resources & Guides
June 8, 2023
Looppanel automatically records your calls, transcribes them, and centralizes all your research data in one place
Unlock efficiency in research: Discover the top transcription tools that save time, enhance accuracy, and boost productivity.
Ever tried to take meeting notes while someone’s speaking? Difficult to capture everything , isn’t it?
Enter transcription software for qualitative research .
This software generates transcripts for meetings, interviews and lectures. (We sure wish we had this tech in college!)
Suddenly, researchers can dive deeper into their work, analyzing more data. Using transcription audio software increases their productivity.
It doesn’t benefit researchers alone. Automated transcription has a host of applications across industries. UX researchers, Academics, Legal professionals, Journalists and Designers can all leverage this technology.
No more spending hours on end, trying to capture exactly what someone said.
“Look Ma, no hands!”
Save time and effort with transcription software. In this article, let’s explore the best software for transcription. We’ll go over the pros and cons of using each of these transcription tools.
Here are six of the best software for transcriptionists:
Did you know?
Marvin transcribes your audio and video files in just minutes. Don’t believe us? Take it for a test drive .
In a nutshell, transcription software converts speech from audio into editable text.
Now let’s get technical. Transcription apps use Machine Learning (ML) to analyze an audio or video file. Algorithms trained on vast datasets evaluate audio input, breaking it down into smaller segments.
Speech recognition engines analyze segments and identify phonemes (smallest sound units). Neural networks handle sequential data, processing speech into a transcript. Natural Language Processing (NLP) deciphers the structure and meaning of transcribed text.
These layers of technology work in tandem to produce a coherent transcript.
There are several benefits of using transcription software:
Transcription can be further classified into three broad categories:
What will you use transcription software for? Who will use it the most? Consider your business requirements before beginning your search for the perfect tool. What functionality do you need?
Look out for a transcription tool that ticks all (or most) of these boxes. We’ve separated the list into the “must-haves” versus the “nice-to-haves”:
Transcription software plays a crucial role in qualitative research, saving researchers time and effort while enhancing data accuracy.
(In case you haven’t noticed, we’re all about freeing up your time. Hop over here to see how AI makes qualitative research powerful .)
By choosing the right tool, researchers can focus on what matters most — discovering valuable insights. Here are six top transcription software options to consider:
A leading light in the universe of transcription software.
Invite Marvin to your meetings or interviews and concentrate fully on participants. Receive a highly accurate and editable transcript in minutes. Collaborative note-taking allows multiple users to add key insights as interviews roll on.
Marvin uses industry-leading AI features. Speaker identification allows you to navigate through a transcript easily. AI generates summaries of transcripts and creates time-stamped insights. A useful starting point from which to begin analysis.
AskAI allows users to interrogate their data across multiple projects. Enter questions in a google-esque search bar, and sit back. AI evaluates your data, producing high quality responses and insights.
Create clips and stitch them together into playlists. Share these with stakeholders to elevate the user voice across the organization.
Marvin integrations connect to tools people rely on. Sync seamlessly with video conferencing apps (Zoom, Google Meet and Microsoft Teams).
A research repository that houses and safeguards all user data. We are GDPR, SOC2 and HIPAA compliant. Anonymize transcripts and blur faces in clips. Your user data stays protected.
With support in over 40 languages, a user-centric transcription software for effortless research collaboration. It’s entirely web-based, so users can access their repository from anywhere at any time.
Calling all content creators.
Descript is best suited for audio and video editing. Write, record, transcribe and edit files all on one platform.
Advanced editing features allow you to create powerful soundbites and clips quickly. Cut portions out of the transcript and the app automatically removes them from the clip. AI features help remove background noises and echoes from clips. Overdub your voice to add context to recordings.
The inbuilt video clip maker readies files for social media sharing. Its multicam capability also captures the speaker in video files. Descript is a great solution for editing files, best for content creators who need to edit on the fly. However, it’s more of an editing tool with transcription as a feature .
An AI-powered meeting transcription software. Fireflies uses voice recognition technology to generate actionable transcripts. Their meeting assistant creates action and follow-up items from transcripts. Track quality of conversations with conversational intelligence.
On Fireflies, users can record clips and capture data with live transcription. Edit and highlight your transcript and add comments. Its advanced search functionality allows users to scan text for keywords and themes.
Fireflies integrates with popular video conferencing platforms such as Zoom, Meet and Teams. Additionally, it syncs with CRM and project management tools
A mobile transcription app that helps generate notes for meetings and interviews. Use its dictation feature to capture what people are saying in real time. Or upload pre-recorded files onto the platform for post-meeting transcription.
Otter allows you to record, organize and save voice notes and files in one place (much like Marvin!). Collaborate with teammates — add comments and highlights to transcripts. Otter has a generous free plan best suited for people who transcribe a few files regularly (without large data volumes).
A popular tool that produces accurate transcripts quickly. Rev offers both human and AI-generated transcription, which costs significantly less. Some companies opt for human transcription for highly sensitive or important data.
Rev has robust editing features. These include creating highlights, adding comments and notes, and enabling read along tracking. It also offers a mobile application from which you can record and upload interviews. While that’s helpful, its interface is a bit clunky and doesn’t sync seamlessly with the platform.
Sonix not only automates transcription, it translates speech as well. The platform creates subtitles for different languages, ideal for multilingual video clips. Predictably, it offers multi-language support for these handy features.
Transcription in Sonix has an impressive accuracy rate. It auto-punctuates text and offers timestamps for easy navigation through a transcript. Auto speaker separation helps identify different speakers.
Sonix boasts a host of helpful integrations. To protect user data, it offers “bank-level” security (their words). Fast, accurate and secure, Sonix is a tool suited best to people who deal with multiple languages regularly.
Ensuring a file has high audio quality helps transcription software capture speech accurately. Use these tips and tricks to get the most out of your transcription software:
Below we address some frequently asked questions about transcription software:
Manual transcription is more accurate than automated transcription. Transcriptionists spend copious amounts of time poring over every detail. They produce a highly accurate transcript, complete with punctuation, industry terms, etc. However, the turnaround time and costs associated with manual transcription are high.
Automated transcription software uses advanced AI and NLP technology, generating largely accurate transcripts. These tools produce transcripts in minutes, at a fraction of the cost. Inevitably, transcription software will make errors that need correction.
In both cases, we recommend a human review the transcript. A final reviewer can identify mistakes and industry-specific terms.
As we continue to feed language models more data, their accuracy will only improve. A future where automated transcription replaces its manual counterpart isn’t far away.
Yes, some apps are better than others.
Human speech is nuanced. Accents and dialects might be difficult for the software to understand. This can lead to mistakes in transcription.
Businesses with a global presence deal with multiple different languages and cultures. We recommend using a transcription tool that supports different languages. One that’s trained on regional accents and dialects does a much better job of capturing speech correctly.
Choose a tool that offers language support for ones that you need.
Did you know?
Marvin supports over 40 languages and dialects.
Transcription software for qualitative research brings resource efficiency.
It enhances the qualitative research process in two ways:
Overall, leveraging automated transcription saves precious resources — time and money. It brings efficiency to the research process. Transcription software frees up a researcher’s time for more analysis. The best transcription tools offer ways to clip insights and share knowledge across an organization.
Recording meeting minutes got a whole lot easier. Cut down the dreaded drudgery of research work with transcription audio software.
This software generates transcripts with astonishing speed and accuracy. Leveraging AI technology, it creates editable transcripts in minutes.
AI has permeated into the transcription industry. This has vast implications not only in UX, but Media and Entertainment, Legal, Medicine, Education and business in general.
It’s important to remember that the field of AI in UX research is at an early stage of its development. It’ll only get better with time. In the future, expect high customization, real-time transcription and industry and geography-specific support.
Implementing transcription software into your workflow is a no-brainer. Especially when you consider manual transcription as the alternative.
Choosing a transcription tool isn’t easy. Try before you buy. Note that many use similar technologies to transcribe files. Evaluate apps on additional features that are helpful to you. You need an application that not only transcribes audio, but houses all your user data. Securely.
One that makes it easily searchable and accessible. And makes insights shareable. What are you waiting for? Put Marvin’s transcription to the test. Set up your free demo today.
Krish Arora leverages his experience as a finance professional to turn data into insights. A passionate writer with a strong appreciation for language, Krish crafts compelling stories with numbers and words to elevate the practice of user research.
Harm Reduction Journal volume 21 , Article number: 148 ( 2024 ) Cite this article
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Xylazine is increasingly prevalent in the unregulated opioid supply in the United States. Exposure to this adulterant can lead to significant harm, including prolonged sedation and necrotic wounds. In the absence of literature describing healthcare providers’ experiences with treating patients who have been exposed to xylazine, we aimed to explore what gaps must be addressed to improve healthcare education and best practices.
From October 2023 to February 2024, we conducted a sequential explanatory mixed-methods study, with (1) a quantitative survey phase utilizing convenience sampling of healthcare providers treating patients in Connecticut and (2) a qualitative semi-structured interview phase utilizing purposive sampling of providers with experience treating patients with xylazine exposure. Summary statistics from the survey were tabulated; interview transcripts were analyzed using thematic analysis.
Seventy-eight eligible healthcare providers participated in our survey. Most participants had heard of xylazine (n = 69, 95.8%) and had some knowledge about this adulterant; however, fewer reported seeing one or more patients exposed to xylazine (n = 46, 59.8%). After sampling from this subgroup, we conducted fifteen in-depth interviews. This qualitative phase revealed five themes: (1) while xylazine is novel and of concern, this is not necessarily exceptional (i.e., there are other emerging issues for patients who use drugs); (2) participants perceived that xylazine was increasingly prevalent in the drug supply, even if they were not necessarily seeing more patients with xylazine-related outcomes (XROs); (3) patients primarily presented with non-XROs, making it difficult to know when conversations about xylazine were appropriate; (4) patients with XROs may experience issues accessing healthcare; (5) providers and their patients are learning together about how to minimize XROs and reduce the sense of helplessness in the face of a novel adulterant.
Xylazine-specific education for healthcare providers is currently insufficient. Improving this education, as well as resources (e.g., drug checking technologies) and data (e.g., research on prevention and treatment of XROs), is crucial to improve care for patients who use drugs.
Across the United States (US), the overdose crisis continues to contribute substantially to premature morbidity and mortality. To exacerbate this crisis, xylazine, a veterinary tranquilizer not approved for use in humans, has emerged as a novel adulterant in the unregulated drug supply and is found almost exclusively in fentanyl [ 1 , 2 , 3 , 4 , 5 , 6 , 7 ]. As an α-2 adrenergic receptor agonist, xylazine’s toxidrome can lead to many serious medical complications, including prolonged sedation, severe hypotension, decreased heart rate, and respiratory depression [ 2 , 4 , 8 , 9 , 10 ]. Further, exposure to xylazine can induce large necrotic wounds that are difficult to manage for people who use drugs (PWUD) and healthcare providers alike [ 9 , 11 , 12 , 13 , 14 ]. In response, the Office of National Drug Control Policy declared xylazine-contaminated fentanyl an emerging threat to the US in April 2023 [ 15 ].
Xylazine was first recognized as an adulterant in the unregulated drug supply in the early 2000’s in Puerto Rico [ 4 , 8 , 16 , 17 ]. After falling off the radar for nearly two decades, xylazine again emerged in post-mortem toxicology and drug seizure data in the Northeastern US before spreading south- and westward [ 1 , 18 , 19 ]. In Connecticut specifically, xylazine is exclusively found in combination with fentanyl in overdose mortality data [ 20 ]. 2019 marked the first year with more than one reported xylazine and fentanyl combination overdose death (n = 71) in Connecticut [ 20 , 21 ]. This number has been on the rise; in 2022 alone, almost 25% of overdose deaths involved a combination of xylazine and fentanyl (n = 353) [ 20 ].
Given the recent emergence and rise of xylazine prevalence in the drug supply in Connecticut, little information about how to mitigate harms from xylazine exposure is readily available for PWUD and providers [ 9 , 21 ]. Funded through the Medical Staff Fund at Yale New Haven Hospital, this study was designed to explore Connecticut-based healthcare providers’ knowledge and perceptions of xylazine exposure to determine key gaps in education for providers and inform medical best practices as they relate to xylazine exposure and associated complications among patients who use drugs. This information was collected to inform the development of targeted medical education for providers about xylazine and the impacts of xylazine exposure.
This sequential explanatory mixed-methods study of Connecticut-based healthcare providers was conducted in two phases: a quantitative survey followed by qualitative interviews. Yale’s Institutional Review Board deemed this study exempt from human subjects review.
Convenience sampling was utilized to recruit a minimum target of 50 study participants for the quantitative phase. Healthcare providers (e.g., MD, DO, RN, etc.) practicing at hospitals, community healthcare centers, harm reduction organizations, and other care settings around Connecticut were informed of this study through medical listservs, word-of-mouth, and social media. All potential participants were provided with information about this study at the beginning of the survey and completion of the survey was accepted as consent to participate. No compensation was awarded for this quantitative phase.
Subsequently, purposive sampling was utilized to recruit participants for the qualitative phase based on select responses to the survey administered during the quantitative phase, including (a) interest in a follow-up interview, and (b) experience treating patients with confirmed or suspected xylazine exposure. Potential participants were contacted for follow-up over email to verify interest in and availability for the interview. We aimed to interview 15 participants during this phase, based on our previous work, with intent to establish the final sample size through discussion of thematic saturation. Prior to interviews, participants were provided an information sheet and consent form via email; these forms described the purpose and procedures of the study, their rights as participants, confidentiality measures, and potential risk. Participants had the option to have the documents verbally reviewed with them by a member of the study team and were given the opportunity to ask questions. Verbal consent to be interviewed and for recording the interview was obtained prior to beginning the qualitative phase and all participants were advised on their right to terminate participation at any time. Participants received a $30 electronic gift card for their time and expertise upon completion of the interview.
The quantitative phase of this study utilized REDCap (Research Electronic Data Capture, hosted at Yale University, Version 14.0.27) to facilitate a survey composed of 37 questions (Supplement 1 ). The survey included questions on (a) providers’ medical background, (b) experience treating patients with xylazine exposure, (c) a modified Harm Reduction Acceptability Scale, [ 22 ] (d) xylazine knowledge, (e) confidence in medical care for xylazine-related outcomes (XROs), (f) demographic information, and (g) interest in a follow-up interview. The survey was designed to take participants 10–15 min to complete. The qualitative phase comprised one-on-one semi-structured interviews, conducted over the teleconferencing software platform, Zoom, to best accommodate the participants’ schedules. The 10-question interview guide, designed to take approximately 30 min, covered (a) medical experience, (b) xylazine knowledge, (c) perception of xylazine, and (d) education on xylazine (Supplement 2 ).
For the quantitative phase, summary statistics were tabulated for key demographic information, xylazine knowledge and perception, and harm reduction acceptance. All quantitative data analysis was conducted using Microsoft Excel and R (R Core Team, Version 4.2.2,). For the qualitative phase, interview recordings were transcribed using Trint software and verified for accuracy by the first author (K.H.). Transcripts were entered into NVivo software (QSR International, Version 1.7.1) to facilitate thematic analysis [ 23 ]. A codebook with both inductive and deductive codes drawn from the interview guide and existing literature (i.e., “Patient Care Experiences” and “Lack of Supplies”) was developed by K.H.. Subsequently, the codebook was discussed among the full study team, improved iteratively, and applied to all transcripts. Themes were discussed with the study team. Pseudonyms for respondents were created for the qualitative analysis presented below to preserve participant confidentiality.
From October 5, 2023, to January 24, 2024, n = 83 people expressed interest and began the online survey. After screening, n = 78 respondents were eligible to participate. Table 1 provides the frequency and percentage of select characteristics of survey participants. The mean age of providers was 40.6 years (SD = 12.0), and most participants were White (n = 55, 70.5%) and non-Hispanic (n = 66, 94.3%). Seventy-eight percent of providers were medical doctors, with internal medicine (n = 37, 47.4%) and addiction medicine (n = 27, 34.6%) being the most represented specialties. The mean number of years of experience that providers had treating patients with substance use or substance use disorder was 8.2 (SD = 9.4). Based on a modified Harm Reduction Acceptability Scale, [ 22 ] most providers who answered these questions expressed favorable attitudes towards harm reduction (n = 70, 97.2%).
Table 2 provides the frequency and percentage of providers’ responses to key survey items.
Most providers had previously heard of xylazine (n = 69, 95.8%) before taking the survey. The majority of respondents knew that (a) xylazine exposure could lead to severe necrotic wounds (n = 68, 94.4%), (b) xylazine is not FDA-approved for use in humans (n = 72, 100%), (c) naloxone cannot reverse a xylazine overdose (n = 69, 95.8%), and (d) xylazine is added to fentanyl to prolong the prolong the opioid/narcotic effect of the fentanyl (n = 67, 93.1%). A smaller proportion of providers believed that xylazine was not a central-acting opioid (n = 51, 71.8%) and that xylazine is almost exclusively found as an adulterant in fentanyl (n = 55, 76.5%).
Over half (n = 46, 59.8%) of providers reported seeing one or more patients who have been exposed to xylazine, while 18 providers (23.4%) did not know how many patients they had seen with a known or expected xylazine exposure. Most providers (n = 43, 55.2%) sometimes or rarely had their patients discuss xylazine with them.
Few providers reported feeling confident (n = 18, 25.4%) or extremely confident (n = 5, 7.0%) in recognizing XROs in their patients. Instead, most providers only felt some confidence in this ability (n = 27, 38.0%). When reporting confidence in their ability to treat patients with XROs, many providers indicated they had some (n = 22, 31.0%), little (n = 22, 31.0%), or no confidence (n = 12, 16.9%). However, for confidence in counseling patients on how to prevent XROs, more providers felt some confidence (n = 16, 22.5%), confident (n = 19, 26.8%), or extremely confident (n = 8, 11.3%) in their abilities.
From November 30, 2023, to February 9, 2024, trained members of the study team conducted one-on-one semi-structured interviews with providers via Zoom. After the a priori goal of n = 15 interviews was met, theoretical saturation was discussed by the study team and deemed to be sufficient (i.e., no new themes emerged over the course of the last few interviews conducted; additional interviews were not likely to reveal new themes). The average duration of the interviews was 24.7 min. Participant characteristics for the qualitative phase are detailed in Table 3 .
Theme 1: “the top of a mountain of sad data points”.
While all providers described the many ways xylazine is troublesome for PWUD, most participants asserted that this adulterant is accompanied by other troublesome issues for this patient population. Dr. Rivera, a physician in internal medicine at a federally qualified health center, stated that the potential for xylazine exposure among PWUD is “just an additional sad data point at the top of a mountain of sad data points that these folks have collected about their situation.” In this way, xylazine was non-uniquely unique; while a novel concern for the healthcare of PWUD, it was one more addition to the list of concerns that was already quite crowded. Ultimately, participants identified xylazine exposure as a distinctive harm for many reasons (e.g., necrotic wounds, marked sedation). Further, Dr. Ford, an addiction medicine physician at a community health center, explained:
“Well, [xylazine] is odd… it can cause these scary complications. It doesn't neatly fit into the opioid category… [Clinicians] like to ‘bucket’ things. There is sort of a fentanyl / heroin bucket. We know what to do about that. Xylazine is in its own bucket. It's hard to kind of conceptualize what it is and how best to combat it.”
Here, xylazine’s novelty can be largely attributed to healthcare providers not feeling as though they have experience with substances that have a similar mechanism of action (i.e., a ‘bucket’) currently being used for medical care or on the streets. Without this direct comparator in their metaphorical toolbox, many providers gauged xylazine’s impact on care by using fentanyl as a benchmark or point-of-reference.
Despite the unique mechanism and impact of xylazine as a street drug, providers often cautioned against xylazine exceptionalism, explaining that many issues are unique when it comes to treating the various needs of PWUD. Dr. Bennet, an infectious disease physician at an urban hospital system, stated:
“The opioid epidemic now has been just kind of crushing for ten years… When I was first a resident, it was pretty much just straight heroin. And then we got fentanyl. And then, occasionally, you'll see people who are skin popping, which has a kind of a similar effect in terms of the necrosis, though not as bad as xylazine. And now [xylazine] on top of it? It's just kind of grim. But I don't know if it really changes my attitude much from where it's been. It's been kind of grim for a while.”
Xylazine was described with this level of nuance by many providers—xylazine was perceived as one of many potential harms PWUD face daily.
Many providers described a strong desire for access to rapid xylazine testing at the point-of-care (POC) to provide immediate results to patients. In the absence of sufficient POC testing, providers were left making educated guesses as to the magnitude of xylazine’s prevalence in the unregulated drug supply and, accordingly, the impact of this adulterant on their patient population. Dr. Campbell, an addiction and emergency medicine physician at a large academic medical center, stated “we see it every day whether we recognize it or not. [That’s] my strong suspicion based on what we see in our overdose death data.” In this way, many providers recognized that they do not diagnose, treat, or discuss XROs with a number of patients that is congruous with what might be suggested by overdose death data. For example, if approximately 25% of overdose deaths in Connecticut test positive for xylazine, providers might expect about a quarter of their patients to present with XROs, not just a few. Thus, without adequate POC testing, providers are left piecing together whether or not xylazine may be involved in their current patient cases. Dr. Roberts, an addiction medicine physician at a medically supervised withdrawal program, stated:
“The large, crater type wounds? Those we can definitely say are related to xylazine. The rest is often conjecture where somebody just appears to be having a much harder time… It's really only a suspicion. Unfortunately, at this stage, there's no reliable test that we have access to that will give us an answer. I understand there are some in development and I think there's one that's available, but it's a ‘send up’ test… 48 hours later, you get your answer. Which isn't really much help.”
Here, not only did Dr. Roberts believe that the lack of POC testing interfered with what they considered to be patient care best practices, but they also expressed frustration with the temporal delays in receiving information about xylazine exposure.
Even in the face of insufficient testing, most providers perceived that xylazine prevalence is growing in the unregulated drug supply—even if they had personally only seen one or two patients with certain XROs. Dr. Sullivan, an internal medicine physician working at an addiction medicine clinic, explained:
“I think that it's more widespread than we're giving it credit for. I've only seen a very small number of patients with ‘for sure’ complications of it. But I think that it is way more widespread than we know and that our patients know as well.”
Many providers shared Dr. Sullivan’s suspicion that xylazine was more prevalent than currently described. In this way, the available data sources for evaluating xylazine exposure among PWUD (e.g., overdose death data) are temporally delayed at best, but also potentially erroneous or misleading (e.g., counted deaths are just the tip of the iceberg).
Participants also described their role in discussing xylazine’s potential harms with their patients. Some providers explained that the initiation of such a conversation was influenced by the reasons a patient sought care, noting that XROs were infrequently the primary reason PWUD sought care and that this can introduce challenges with starting a conversation. For instance, despite perceiving xylazine exposure to be widespread, Dr. Sullivan described how it is difficult to talk to patients about xylazine; they stated “when I bring [xylazine] up, [patients] just want to focus on what they are there for… We know there's cocaine and we know there's fentanyl. They address that rather than something that I can't test for.” Providers described feeling ill-equipped to discuss this novel adulterant—especially in the absence of proper tools to diagnose and treat xylazine exposure. Further, providers described how it was difficult to know when it was appropriate or necessary to discuss this novel adulterant with patients, particularly in the face of competing priorities. For instance, Dr. Rivera explained:
“If I have a patient that's coming in who has very severe heart failure, and they are clearly having an exacerbation right in front of me, and I need to send them to the emergency room? That's something that I have to address right away. And it's not helpful to them for me to also sort of screen them for xylazine exposure. And it's very rare for me to just have a visit where there aren't acute issues happening or something very serious that needs to be addressed that wouldn’t be more threatening to their life than their xylazine exposure, as hard as that might be to believe.”
Thus, despite the seriousness of potential xylazine exposure, PWUD often have more pressing health concerns that must be addressed during medical care. Due to this limitation, providers in high acuity settings may not always serve as the best primary point of education for PWUD on xylazine; in fact, some providers urged the importance of harm reduction organizations and word-of-mouth among networks of PWUD for this information dissemination.
However, some providers did report initiating xylazine-specific conversations with their patients when it was deemed relevant and important. Dr. Baker, an addiction and internal medicine physician employed at an addiction treatment clinic, explained one recent case in which they spurred conversation with a patient:
“We approached her about [her positive xylazine result] and just said, 'hey, I know that you're still using fentanyl and we're just trying to help to give you some extra ammunition for reasons to abstain. And here's one of them,' and we showed her some pictures, actually, on the internet of some of these xylazine associated wounds.”
Here, Dr. Baker utilized a positive screen on a send out test as a conversation starter to introduce xylazine and its related harms to a patient. While this was seen as an opportunity to educate the patient, Dr. Baker additionally considered xylazine to be a lever that could help motivate specific care goals. In this way, some providers perceived that the presence of xylazine in the drug supply might influence drug use behaviors (e.g., reducing drug intake) among specific patients. However, other providers perceived that the discussion of xylazine—in the absence of specific tools or robust information to provide patients—might reinforce stigma, induce fear, and be potentially harmful for patient care, as discussed below.
Multiple providers lamented that XROs are likely to impact healthcare seeking, healthcare access, and the quality of care for patients who use drugs; further, some providers explained that these impacts may be exacerbated by preexisting stigma around drug use in many medical care settings. One way that xylazine was described to impact patient care was in the context of accessing medical care for wounds and fear around receiving poor management of their substance use disorder. Alex, a nurse practitioner at a behavioral health organization, described:
“Recently, I had a patient with xylazine wounds and abscesses. He was very sick, febrile, and needed to go to the hospital. He was coming into the clinic knowing that he was really sick and knowing he couldn't manage his wounds himself. But also, he was afraid to go to the hospital first because he didn't want to be sick and didn't want to not have that methadone in place before going. That was someone that we initiated on methadone and then sent immediately to the hospital for care.”
In this way, the provider explained how a patient seeking care for wounds might in turn be worried they would receive inadequate treatment for withdrawal symptoms. Here, while a patient may have previously been able to avoid care settings where their substance use was poorly managed, XROs—especially wounds—made it difficult for PWUD to avoid acute care or other medical settings where they may experience fear, stigma, shame, or other negative feelings around their drug use.
Additionally, many providers discussed that PWUD exposed to xylazine might not get proper follow-up for their XROs, largely depending on where they seek care. For instance, Dr. Bennet, who provides inpatient infectious disease consultations, described one patient case where this discontinuity in care was especially relevant:
“Unfortunately, [this patient] would come into the ER when she was very sick, get some antibiotics, and then usually leave the ER not too long after. But she had the worst scarring I'd ever seen. And it was really getting to the point where a good proportion of her upper and lower limbs are now all pretty fairly scarred… and unfortunately, I didn't get much of a chance to build a rapport with her because like I said, I saw her in the ER and by the time I came back the next morning, she was already gone.”
While this patient was accessing some level of care in the emergency department, Dr. Bennet describes that it was unclear whether or how this patient was managing her extensive xylazine-related wounds. Ultimately, numerous providers described a similar pattern wherein patients with XROs were leaving care settings without adequate care plans in place and/or against medical advice; however, the exact mechanism behind this is not yet fully understood (e.g., fear, stigma, pain, etc.). Additionally, in the quote above, Dr. Bennet explains that this abbreviated interaction with the patient also interfered with building a strong patient-provider relationship. In the context of drug use, and xylazine specifically, this building of “rapport” is crucial, as stigma and fear could interfere with their relationships with providers. For example, Dr. Blackwood, an infectious disease physician in an inpatient hospital setting, described a recent patient consultation in which they believed the patient was not being fully truthful about their drug use:
“[This patient] had very extensive wounds on the dorsal aspect of his hands that were kind of red and beefy and had a granulation tissue and raised border around them. He wasn't entirely straightforward about his drug use history but said that he had injected in the past. But not recently… He had tested positive for xylazine on the send-out test… But he was like, 'oh, [this wound] was an allergic reaction to a glove that I had. It wasn't related to any recent injection drug use.'”
In this case, having a pre-existing rapport might have eased the patient's fear and ameliorated stigma in ways that encouraged the patient to disclose their drug use behaviors to their provider.
Even if PWUD have an established care continuum and established rapport with their providers, it is still imperative to try to balance any existing power differentials. For instance, Dr. Baker—who used pictures of xylazine wounds to try to get their patient to abstain from fentanyl—further described that they believed:
“Stigma and shame associated with having these very grotesque wounds [might lead patients to] hide from their providers because they're ashamed of them… If a patient comes in and they're hiding things under their sleeves, so to speak, really make sure that you visualize – with patient consent – their arms and legs… And [my patient] that I was taking care of last summer with all these wounds? She was reporting severe pain all the time. You have to decide how much of that one wanted to believe… she looked quite comfortable.”
Thus, while providers can try to comprehend the impact stigma and shame have on their patients who use drugs, they must also be open to actively dismantling environments in which patients feel stigmatized and shamed. Without access to settings that meet people where they are, patients may delay seeking care. Such delays worsen outcomes that can include loss of limb function and amputation. Further, even once in care, PWUD may not feel comfortable disclosing information about their drug use, showing their wounds, or revealing their true pain levels—especially if they have previously been exposed to care settings where they are marginalized and systematically not believed.
All of the participants, in some aspect, described how they did not always feel as though they had the information or tools necessary to provide high-quality care or counseling for patients with XROs or those at risk for xylazine exposure. As Dr. Rivera stated, “I think there's just a lot that [providers] don't know and, certainly, I think a lot that the folks that we take care of who use intravenous drugs don’t. We're all learning together.” Many other participants recognized that patients who use drugs might have more knowledge about this adulterant than they do as providers. This creates a learning opportunity for providers; while providers may have asymmetric information about current medical care best practices and proposed mechanisms of action, patients may have asymmetric information as well as it relates to street-based medicine and recognizing if xylazine is in their drug supply. Dr. Ford explained that:
“This is one of those examples in medical care where I think patients know more about it than we do. And so, whereas about maybe a year ago there were more like, 'Doc, what the heck is this?' types of conversations, now, oftentimes, I am learning from my patients about xylazine.”
Learning about novel adulterants like xylazine from patients who use drugs could inform best medical best practices over time and develop community-informed research questions. Providers might be encouraged to be open to this learning opportunity from patients, as Drs. Ford and Rivera were.
Without all of the knowledge and tools providers need and want, xylazine’s evolving medical landscape has created a sense of helplessness among providers. Many participants indicated that xylazine’s presence in the unregulated drug supply led to feelings of worry and fear both on (a) behalf of their patients and (b) for their own ability to provide care. Gabrielle, a nurse practitioner at a methadone clinic, stated that xylazine has “definitely changed the game of addiction… it's worrisome.” To mitigate such feelings of worry and to ensure quality care, providers not only looked to patients for closing information gaps, but also leaned on the specific expertise of other medical specialties to fill information or resource gaps in patient care. Dr. Thompson, an infectious disease and internal medicine physician, explained some of the resources available at their healthcare setting:
“We have excellent plastic surgeons who have been really good partners in kind of debriding the wounds as needed. And then if there is a wound, in addition to a general infectious disease follow up, we have a wound care center. And the nursing staff there is really meticulous. And there's a plastic surgeon in that clinic, there's a nurse practitioner who specializes in wound care. And then, of course, we have addiction medicine, so we really do have wraparound services to manage that.”
Here, the participant was able to utilize referrals and collaboration with a multidisciplinary team to ensure the best treatment for their patients with xylazine exposure. Ultimately, many providers described how having multiple specialties and areas of expertise involved in patient care reduced their feelings of helplessness and worry.
Our mixed-methods study to explore healthcare providers’ knowledge and perception of xylazine in the unregulated drug supply highlighted the need for targeted research and purposeful information dissemination to fill crucial gaps as they relate to xylazine exposure among PWUD. The quantitative phase revealed that although our sample of Connecticut-based healthcare providers had some baseline knowledge on xylazine, this knowledge did not necessarily translate into confidence in recognizing, treating, or counseling patients with XROs. The qualitative phase of our study, focusing on providers who perceived they had pre-existing knowledgeable and experience with xylazine and XROs, elucidated the possible mechanisms behind this, as providers highlighted the need for (a) continuing medical education on xylazine and XROs, (b) improved resources for managing XROs, such as more rapid xylazine testing at the POC and (c) access to quality data and research on the prevalence of xylazine in the local drug supply, and (d) information of the best evidence-based practices for treating XROs. Our study also found that healthcare providers who serve PWUD are not solely or uniquely concerned with xylazine, as other pressing health issues and even other adulterants are also of growing concern.
This study highlighted key areas where further medical education is needed, even among providers with high acceptability of harm reduction principles and general familiarity with xylazine as an adulterant. For instance, while providers noted that they felt xylazine was unique in terms of its mechanism of action and they did not have experience with similar substances, medical education could point to similar α-2 agonists they likely have experience with medically, such as clonidine [ 24 ]. However, not only did providers point to a need for more information about xylazine’s mechanism of action and impacts on health for themselves and their patients, they also called for improved data sources and research for understanding xylazine in the context of their patient population. Unfortunately, providers are currently left relying on delayed or biased data sources (e.g., overdose death data, drug seizure data) to establish the prevalence of xylazine and its potential for exposure in their patient populations [ 18 , 25 , 26 ]. To overcome this, one potential solution would be to improve funding for community-based drug checking programs that would provide more rapid and accurate results for patients.
It is important to elucidate if, and how, xylazine impacts perceived and experienced stigma among PWUD. While there are numerous ways drug use and bodily markings related to drug use have been shown to contribute to stigma among PWUD, it is crucial to understand how XROs—especially wounds—may novelly impact patient care and healthcare seeking among PWUD [ 27 , 28 , 29 , 30 ]. In lieu of specific research aimed at understanding XRO-associated stigma, providers should continuously strive to create safe environments for their patients who use drugs. This is especially critical given that PWUD may wait until their condition becomes serious before seeking medical care [ 29 , 31 , 32 ]. For instance, patients with necrotic wounds may have waited a significant period of time before presenting for care; while it is still unclear how painful xylazine wounds are at the various stages of development and healing, providers should heed caution and make every effort to ensure patients are able to access a continuity of care.
On a more positive note, we found that providers reported working with PWUD to build knowledge and practice bases to address xylazine and XROs. Certainly, this finding is likely influenced by our sample of providers who were mostly harm reduction-oriented; regardless, future efforts to build knowledge around xylazine and XROs should be collaborative with opportunities for information exchange with a wide range of providers and community members. For instance, people with lived experience should be incorporated into—and compensated for—medical training for providers who serve PWUD. Additionally, providers could explore how existing social networks of PWUD might be harnessed to encourage information dissemination about XROs and prevention of unwanted xylazine exposure.
Ultimately, without addressing these key information and practice gaps, providers may continue to feel fear, worry, and helplessness when it comes to serving patients with XROs. Funding training programs for medical providers and others who serve PWUD with XROs (e.g., harm reduction outreach workers) could serve as a key intervention for improving patient care and limiting the harms caused by xylazine in the unregulated drug supply.
While our study fills a research gap and responds to the urgent need for more research on xylazine, some limitations should be mentioned. First, our study was not designed to be representative of all healthcare providers and should not be interpreted this way; instead, our goal was to examine a diversity of provider experiences, not make population-level generalizations. For instance, those with some baseline knowledge of xylazine were more likely to self-select for participation (i.e., most providers in our sample had previously heard of xylazine). It is very likely that providers in geographic regions with a lower prevalence of xylazine in the drug supply and specialties not represented here may be unaware of xylazine and its impact. However, our study shows that even amongst those with some xylazine knowledge, providers still lack confidence and knowledge in certain areas of patient care related to xylazine.
Further, most providers we surveyed and subsequently interviewed expressed attitudes favorable towards harm reduction (as opposed to abstinence-focused approaches); this almost certainly influenced how providers perceived xylazine and measures to address XROs. Accordingly, providers without such attitudes would likely perceive of xylazine and XROs differently. It is worth exploring in future studies how providers with an abstinence-focused mindset, and those simply unfamiliar with the philosophy and practice of harm reduction, might perceive of xylazine in the unregulated supply.
Additionally, our study utilized self-reported information about xylazine knowledge and perceptions, so resulting information may be misclassified if participants experienced poor recall or other errors. Lastly, due to the cross-sectional and provider-focused nature of our study design, we cannot make any temporal conclusions (e.g., about how certain areas of provider knowledge impacts patient outcomes, etc.).
There are key knowledge and practice gaps related to xylazine for healthcare providers, even if they have experience serving PWUD who have been exposed to this adulterant. Future research should focus on mechanisms to improve care for PWUD, including informing harm reduction and medical care best practices to limit the harms associated with xylazine exposure (i.e., prolonged sedation, overdose, wounds). Additionally, policy and funding should support evidence-based harm reduction strategies that can mitigate XROs (e.g., wound care supply provision, etc.). Without filling such research gaps and providing PWUD access to harm reduction resources, providers will likely continue to feel powerless in the face of this pressing health issue.
The datasets generated and/or analyzed during the current study are not publicly available to protect participant privacy and confidentiality.
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We would like to thank Sami Hamdan, MD, MPH, for his assistance with conducting interviews.
This project was funded by the Medical Staff Fund at Yale New Haven Hospital.
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Katherine Hill & Robert Heimer
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Rebecca Minahan-Rowley, Emma T. Biegacki & Kimberly L. Sue
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KH, KLS, and RH conceived of the project idea. KH led quantitative and qualitative instrument development, and all authors provided feedback on instruments. KH organized the quantitative phase in REDCap. KH, RM-R, and EB conducted qualitative interviews. KH conducted quantitative data analysis and qualitative thematic analysis and led manuscript creation. All authors contributed to the final version of the manuscript.
Correspondence to Katherine Hill .
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Yale’s Institutional Review Board deemed this study exempt from human subjects review. All potential participants in the quantitative phase were provided with information about this study at the beginning of the survey and completion of the survey was accepted as consent to participate. Prior to interviews in the qualitative phase, participants were provided an information sheet and consent form via email; these forms described the purpose and procedures of the study, their rights as participants, confidentiality measures, and potential risk. Participants had the option to have the documents verbally reviewed with them by a member of the study team and were given the opportunity to ask questions. Verbal consent to be interviewed and for recording the interview was obtained prior to beginning the qualitative phase and all participants were advised on their right to terminate participation at any time.
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Hill, K., Minahan-Rowley, R., Biegacki, E.T. et al. Providers’ knowledge and perception of xylazine in the unregulated drug supply: a sequential explanatory mixed-methods study. Harm Reduct J 21 , 148 (2024). https://doi.org/10.1186/s12954-024-01052-4
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