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The Case Study as a Research Method

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Presentation on theme: "The Case Study as a Research Method"— Presentation transcript:

Critical Reading Strategies: Overview of Research Process

Presented by Dr. Shiv Ram Pandey.

Research Methods in Crime and Justice Chapter 4 Classifying Research.

Qualitative Social Work Research

Reviewing and Critiquing Research

Case Studies Pat McGee. Why Research? ● To distinguish between rival plausible hypotheses. [Campbell 1994] ● To attack proposed scientific theories. [Popper.

Research Methodologies

Case Studies in Assistive Technology

Objective 4.1 Evaluate the use of case studies in research.

Sabine Mendes Lima Moura Issues in Research Methodology PUC – November 2014.

Outline: Research Methodology: Case Study - what is case study

Designing Case Studies. Objectives After this session you will be able to: Describe the purpose of case studies. Plan a systematic approach to case study.

Case Study Research By Kenneth Medley.

CASE STUDIES. W HAT IS A C ASE S TUDY ? A case study is a specific, holistic, often unique instance that is frequently designed to illustrate a more general.

Cheryl Halliburton & Ayana Murray Long Island University – C.W. Post EDD 1005 – Research Methods I Dr. Jan Hammond October 23, 2011.

Case Study Research A Qualitative Approach to Inquiry

Formulating the research design

Research Design Mixed Methods

Case Studies Segments 32,33,34. Case Study Process - Overview.

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Qualitative case study research (CC-BY, 2020)

CC BY is the correct license for this work. Ignore the ones in the slides: use this materials as you like, with attribution. (KW, 02-2020)

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Thabit Alomari

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Crafting a research design is a daunting task no matter what research method the researcher chooses to work with. Qualitative research study stands as one of the most rigorous and demanding—yet rewarding—research paradigms when the researchers have a narrative, a story to portray in the literature-specific both for their readers and the scientific community. With the intent to describe not only their own personal journey, but also that of those who help unravel previously unexplained phenomena, qualitative researchers undertake a central theme and refer to the lived experiences of their study participants, starting from the data collection stage to analysis and interpretation of their findings. They ask the very fundamental question words (i.e., how, why, and what) with which the study builds up to a rather more profound level. With certain philosophical underpinnings, dimensions, and approaches, qualitative researchers find themselves engaged in a plethora of words, texts, and images (Creswell, 2007). Researchers’ ontological and epistemological positioning additionally informs their choices of methods and methodology, the latter which is a theoretical perspective acting as a bridge between the two (Creswell, 2007). Regarding this and other characteristics, it is also important to note that an impeccable qualitative study design cannot be achieved without researchers’ investing a long time and finances, the resources without which a seamless research study would not be produced. With the purpose of discussing such and several more distinctive characteristics, metaphors, various research paradigms, and considerations throughout, the purpose of this paper is to shed light to what a qualitative research study essentially is, how researchers deal with it throughout the research process, when it is appropriate to conduct one and when not, its advantages, disadvantages, and others. Each component that goes into the design of qualitative research study will be handled under close lens.

Sumaya Usama

International journal of qualitative studies on health and well-being

Virginia Dickson-Swift

Despite on-going debate about credibility, and reported limitations in comparison to other approaches, case study is an increasingly popular approach among qualitative researchers. We critically analysed the methodological descriptions of published case studies. Three high-impact qualitative methods journals were searched to locate case studies published in the past 5 years; 34 were selected for analysis. Articles were categorized as health and health services (n=12), social sciences and anthropology (n=7), or methods (n=15) case studies. The articles were reviewed using an adapted version of established criteria to determine whether adequate methodological justification was present, and if study aims, methods, and reported findings were consistent with a qualitative case study approach. Findings were grouped into five themes outlining key methodological issues: case study methodology or method, case of something particular and case selection, contextually bound case study, research...

This seminar focuses on qualitative methods in the social sciences. It is structured as a survey course, exposing students to a range of issues, rather than intensive training in a single approach. The purpose of the seminar is twofold: First, to provide participants with a broad sense of qualitative research strategies, a better understanding of how to design and carry out research, an awareness of the different logics and trade-offs that distinguish methodologies and methods and an improved capacity to read and evaluate diverse qualitative social science research. Second, to write a dissertation proposal that will be competitive for various external dissertation fellowship funders—such as NSF, Fulbright, SSRC, etc.—and defensible before one’s dissertation committee.

Marie-Hélène Paré

This course provides participants with advanced understanding and applied skills in conducting qualitative content analysis (QCA), thematic analysis (TA), cross-case analysis (CCA) and grounded theory (GT) using NVivo. The course addresses the gap both in the literature and in scholarship training on how to conduct the four above methods from the stage of data coding to presenting findings in a CAQDAS environment. Upon completion, participants will be able to distinguish the aim and specificities of each method, explain how each method is suitable to answer specific research questions, and assess the methodological quality of studies that used the four methods by means of critical appraisal. Being an advanced course, participants should be fully cognizant of the concepts and procedures underlying qualitative data analysis (coding, memoing, patterns seeking) as well as the use of advanced features in NVivo.

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Chapter 20. Presentations

Introduction.

If a tree falls in a forest, and no one is around to hear it, does it make a sound? If a qualitative study is conducted, but it is not presented (in words or text), did it really happen? Perhaps not. Findings from qualitative research are inextricably tied up with the way those findings are presented. These presentations do not always need to be in writing, but they need to happen. Think of ethnographies, for example, and their thick descriptions of a particular culture. Witnessing a culture, taking fieldnotes, talking to people—none of those things in and of themselves convey the culture. Or think about an interview-based phenomenological study. Boxes of interview transcripts might be interesting to read through, but they are not a completed study without the intervention of hours of analysis and careful selection of exemplary quotes to illustrate key themes and final arguments and theories. And unlike much quantitative research in the social sciences, where the final write-up neatly reports the results of analyses, the way the “write-up” happens is an integral part of the analysis in qualitative research. Once again, we come back to the messiness and stubborn unlinearity of qualitative research. From the very beginning, when designing the study, imagining the form of its ultimate presentation is helpful.

Because qualitative researchers are motivated by understanding and conveying meaning, effective communication is not only an essential skill but a fundamental facet of the entire research project. Ethnographers must be able to convey a certain sense of verisimilitude, the appearance of true reality. Those employing interviews must faithfully depict the key meanings of the people they interviewed in a way that rings true to those people, even if the end result surprises them. And all researchers must strive for clarity in their publications so that various audiences can understand what was found and why it is important. This chapter will address how to organize various kinds of presentations for different audiences so that your results can be appreciated and understood.

In the world of academic science, social or otherwise, the primary audience for a study’s results is usually the academic community, and the primary venue for communicating to this audience is the academic journal. Journal articles are typically fifteen to thirty pages in length (8,000 to 12,000 words). Although qualitative researchers often write and publish journal articles—indeed, there are several journals dedicated entirely to qualitative research [1] —the best writing by qualitative researchers often shows up in books. This is because books, running from 80,000 to 150,000 words in length, allow the researcher to develop the material fully. You have probably read some of these in various courses you have taken, not realizing what they are. I have used examples of such books throughout this text, beginning with the three profiles in the introductory chapter. In some instances, the chapters in these books began as articles in academic journals (another indication that the journal article format somewhat limits what can be said about the study overall).

While the article and the book are “final” products of qualitative research, there are actually a few other presentation formats that are used along the way. At the very beginning of a research study, it is often important to have a written research proposal not just to clarify to yourself what you will be doing and when but also to justify your research to an outside agency, such as an institutional review board (IRB; see chapter 12), or to a potential funder, which might be your home institution, a government funder (such as the National Science Foundation, or NSF), or a private foundation (such as the Gates Foundation). As you get your research underway, opportunities will arise to present preliminary findings to audiences, usually through presentations at academic conferences. These presentations can provide important feedback as you complete your analyses. Finally, if you are completing a degree and looking to find an academic job, you will be asked to provide a “job talk,” usually about your research. These job talks are similar to conference presentations but can run significantly longer.

All the presentations mentioned so far are (mostly) for academic audiences. But qualitative research is also unique in that many of its practitioners don’t want to confine their presentation only to other academics. Qualitative researchers who study particular contexts or cultures might want to report back to the people and places they observed. Those working in the critical tradition might want to raise awareness of a particular issue to as large an audience as possible. Many others simply want everyday, nonacademic people to read their work, because they think it is interesting and important. To reach a wide audience, the final product can look like almost anything—it can be a poem, a blog, a podcast, even a science fiction short story. And if you are very lucky, it can even be a national or international bestseller.

In this chapter, we are going to stick with the more basic quotidian presentations—the academic paper / research proposal, the conference slideshow presentation / job talk, and the conference poster. We’ll also spend a bit of time on incorporating universal design into your presentations and how to create some especially attractive and impactful visual displays.

Researcher Note

What is the best piece of advice you’ve ever been given about conducting qualitative research?

The best advice I’ve received came from my adviser, Alford Young Jr. He told me to find the “Jessi Streib” answer to my research question, not the “Pierre Bourdieu” answer to my research question. In other words, don’t just say how a famous theorist would answer your question; say something original, something coming from you.

—Jessi Streib, author of The Power of the Past and Privilege Lost

Writing about Your Research

The journal article and the research proposal.

Although the research proposal is written before you have actually done your research and the article is written after all data collection and analysis is complete, there are actually many similarities between the two in terms of organization and purpose. The final article will (probably—depends on how much the research question and focus have shifted during the research itself) incorporate a great deal of what was included in a preliminary research proposal. The average lengths of both a proposal and an article are quite similar, with the “front sections” of the article abbreviated to make space for the findings, discussion of findings, and conclusion.


—	Proposal	Article
Introduction	20%	10%
Formal abstract with keywords	—	300
Overview	300	300
Topic and purpose	200	200
Significance	200	200
Framework and general questions research questions	100	200
Limitations	100	—
Literature Review	30%	10%
Theory grounding/framing the research question or issue	500	350
Review of relevant literature and prior empirical research in areas	1000	650
Design and Methodology	50%	20%
Overall approach and fit to research question	250	200
Case, site, or population selection and sampling strategies	500	400
Access, role, reciprocity, trust, rapport issues	200	150
Reflective biography/situation of self	200	200
Ethical and political considerations	200	200
Data collection methods	500	400
Data management plan	200	—
Timeline	100	—
Data analysis procedures	250	250
Steps taken to ensure reliability, trustworthiness, and credibility	100	200
Findings/Discussion	0%	45%
Themes and patterns; examples	—	3,000
Discussion of findings (tying to theory and lit review)	—	1,500
Final sections	0%	15%
Limitations	—	500
Conclusion	—	1000
TOTAL WORDS	5,000	10,000

Figure 20.1 shows one model for what to include in an article or research proposal, comparing the elements of each with a default word count for each section. Please note that you will want to follow whatever specific guidelines you have been provided by the venue you are submitting the article/proposal to: the IRB, the NSF, the Journal of Qualitative Research . In fact, I encourage you to adapt the default model as needed by swapping out expected word counts for each section and adding or varying the sections to match expectations for your particular publication venue. [2]

You will notice a few things about the default model guidelines. First, while half of the proposal is spent discussing the research design, this section is shortened (but still included) for the article. There are a few elements that only show up in the proposal (e.g., the limitations section is in the introductory section here—it will be more fully developed in the conclusory section in the article). Obviously, you don’t have findings in the proposal, so this is an entirely new section for the article. Note that the article does not include a data management plan or a timeline—two aspects that most proposals require.

It might be helpful to find and maintain examples of successfully written sections that you can use as models for your own writing. I have included a few of these throughout the textbook and have included a few more at the end of this chapter.

Make an Argument

Some qualitative researchers, particularly those engaged in deep ethnographic research, focus their attention primarily if not exclusively on describing the data. They might even eschew the notion that they should make an “argument” about the data, preferring instead to use thick descriptions to convey interpretations. Bracketing the contrast between interpretation and argument for the moment, most readers will expect you to provide an argument about your data, and this argument will be in answer to whatever research question you eventually articulate (remember, research questions are allowed to shift as you get further into data collection and analysis). It can be frustrating to read a well-developed study with clear and elegant descriptions and no argument. The argument is the point of the research, and if you do not have one, 99 percent of the time, you are not finished with your analysis. Calarco ( 2020 ) suggests you imagine a pyramid, with all of your data forming the basis and all of your findings forming the middle section; the top/point of the pyramid is your argument, “what the patterns in your data tell us about how the world works or ought to work” ( 181 ).

The academic community to which you belong will be looking for an argument that relates to or develops theory. This is the theoretical generalizability promise of qualitative research. An academic audience will want to know how your findings relate to previous findings, theories, and concepts (the literature review; see chapter 9). It is thus vitally important that you go back to your literature review (or develop a new one) and draw those connections in your discussion and/or conclusion. When writing to other audiences, you will still want an argument, although it may not be written as a theoretical one. What do I mean by that? Even if you are not referring to previous literature or developing new theories or adapting older ones, a simple description of your findings is like dumping a lot of leaves in the lap of your audience. They still deserve to know about the shape of the forest. Maybe provide them a road map through it. Do this by telling a clear and cogent story about the data. What is the primary theme, and why is it important? What is the point of your research? [3]

A beautifully written piece of research based on participant observation [and/or] interviews brings people to life, and helps the reader understand the challenges people face. You are trying to use vivid, detailed and compelling words to help the reader really understand the lives of the people you studied. And you are trying to connect the lived experiences of these people to a broader conceptual point—so that the reader can understand why it matters. ( Lareau 2021:259 )

Do not hide your argument. Make it the focal point of your introductory section, and repeat it as often as needed to ensure the reader remembers it. I am always impressed when I see researchers do this well (see, e.g., Zelizer 1996 ).

Here are a few other suggestions for writing your article: Be brief. Do not overwhelm the reader with too many words; make every word count. Academics are particularly prone to “overwriting” as a way of demonstrating proficiency. Don’t. When writing your methods section, think about it as a “recipe for your work” that allows other researchers to replicate if they so wish ( Calarco 2020:186 ). Convey all the necessary information clearly, succinctly, and accurately. No more, no less. [4] Do not try to write from “beginning to end” in that order. Certain sections, like the introductory section, may be the last ones you write. I find the methods section the easiest, so I often begin there. Calarco ( 2020 ) begins with an outline of the analysis and results section and then works backward from there to outline the contribution she is making, then the full introduction that serves as a road map for the writing of all sections. She leaves the abstract for the very end. Find what order best works for you.

Presenting at Conferences and Job Talks

Students and faculty are primarily called upon to publicly present their research in two distinct contexts—the academic conference and the “job talk.” By convention, conference presentations usually run about fifteen minutes and, at least in sociology and other social sciences, rely primarily on the use of a slideshow (PowerPoint Presentation or PPT) presentation. You are usually one of three or four presenters scheduled on the same “panel,” so it is an important point of etiquette to ensure that your presentation falls within the allotted time and does not crowd into that of the other presenters. Job talks, on the other hand, conventionally require a forty- to forty-five-minute presentation with a fifteen- to twenty-minute question and answer (Q&A) session following it. You are the only person presenting, so if you run over your allotted time, it means less time for the Q&A, which can disturb some audience members who have been waiting for a chance to ask you something. It is sometimes possible to incorporate questions during your presentation, which allows you to take the entire hour, but you might end up shorting your presentation this way if the questions are numerous. It’s best for beginners to stick to the “ask me at the end” format (unless there is a simple clarifying question that can easily be addressed and makes the presentation run more smoothly, as in the case where you simply forgot to include information on the number of interviews you conducted).

For slideshows, you should allot two or even three minutes for each slide, never less than one minute. And those slides should be clear, concise, and limited. Most of what you say should not be on those slides at all. The slides are simply the main points or a clear image of what you are speaking about. Include bulleted points (words, short phrases), not full sentences. The exception is illustrative quotations from transcripts or fieldnotes. In those cases, keep to one illustrative quote per slide, and if it is long, bold or otherwise, highlight the words or passages that are most important for the audience to notice. [5]

Figure 20.2 provides a possible model for sections to include in either a conference presentation or a job talk, with approximate times and approximate numbers of slides. Note the importance (in amount of time spent) of both the research design and the findings/results sections, both of which have been helpfully starred for you. Although you don’t want to short any of the sections, these two sections are the heart of your presentation.



Introduction	5 min	1	1 min	1
Lit Review (background/justification)	1-2 min	1	3-5 min	2
Research goals/questions	1 min	1	1-2 min	1
Research design/data/methods**	2 min**	1	5 min**	2
Overview	1 min	1	3 min	1
Findings/results**	4-8 min**	4-8	20 min**	4-6
Discussion/implications	1 min	1	5 min	1
Thanks/References	1 min	1	1 min	1

Fig 20.2. Suggested Slideshow Times and Number of Slides

Should you write out your script to read along with your presentation? I have seen this work well, as it prevents presenters from straying off topic and keeps them to the time allotted. On the other hand, these presentations can seem stiff and wooden. Personally, although I have a general script in advance, I like to speak a little more informally and engagingly with each slide, sometimes making connections with previous panelists if I am at a conference. This means I have to pay attention to the time, and I sometimes end up breezing through one section more quickly than I would like. Whatever approach you take, practice in advance. Many times. With an audience. Ask for feedback, and pay attention to any presentation issues that arise (e.g., Do you speak too fast? Are you hard to hear? Do you stumble over a particular word or name?).

Even though there are rules and guidelines for what to include, you will still want to make your presentation as engaging as possible in the little amount of time you have. Calarco ( 2020:274 ) recommends trying one of three story structures to frame your presentation: (1) the uncertain explanation , where you introduce a phenomenon that has not yet been fully explained and then describe how your research is tackling this; (2) the uncertain outcome , where you introduce a phenomenon where the consequences have been unclear and then you reveal those consequences with your research; and (3) the evocative example , where you start with some interesting example from your research (a quote from the interview transcripts, for example) or the real world and then explain how that example illustrates the larger patterns you found in your research. Notice that each of these is a framing story. Framing stories are essential regardless of format!

A Word on Universal Design

Please consider accessibility issues during your presentation, and incorporate elements of universal design into your slideshow. The basic idea behind universal design in presentations is that to the greatest extent possible, all people should be able to view, hear, or otherwise take in your presentation without needing special individual adaptations. If you can make your presentation accessible to people with visual impairment or hearing loss, why not do so? For example, one in twelve men is color-blind, unable to differentiate between certain colors, red/green being the most common problem. So if you design a graphic that relies on red and green bars, some of your audience members may not be able to properly identify which bar means what. Simple contrasts of black and white are much more likely to be visible to all members of your audience. There are many other elements of good universal design, but the basic foundation of all of them is that you consider how to make your presentation as accessible as possible at the outset. For example, include captions whenever possible, both as descriptions on slides and as images on slides and for any audio or video clips you are including; keep font sizes large enough to read from the back of the room; and face the audience when you are.

Poster Design

Undergraduate students who present at conferences are often encouraged to present at “poster sessions.” This usually means setting up a poster version of your research in a large hall or convention space at a set period of time—ninety minutes is common. Your poster will be one of dozens, and conference-goers will wander through the space, stopping intermittently at posters that attract them. Those who stop by might ask you questions about your research, and you are expected to be able to talk intelligently for two or three minutes. It’s a fairly easy way to practice presenting at conferences, which is why so many organizations hold these special poster sessions.

A good poster design will be immediately attractive to passersby and clearly and succinctly describe your research methods, findings, and conclusions. Some students have simply shrunk down their research papers to manageable sizes and then pasted them on a poster, all twelve to fifteen pages of them. Don’t do that! Here are some better suggestions: State the main conclusion of your research in large bold print at the top of your poster, on brightly colored (contrasting) paper, and paste in a QR code that links to your full paper online ( Calarco 2020:280 ). Use the rest of the poster board to provide a couple of highlights and details of the study. For an interview-based study, for example, you will want to put in some details about your sample (including number of interviews) and setting and then perhaps one or two key quotes, also distinguished by contrasting color background.

Incorporating Visual Design in Your Presentations

In addition to ensuring that your presentation is accessible to as large an audience as possible, you also want to think about how to display your data in general, particularly how to use charts and graphs and figures. [6] The first piece of advice is, use them! As the saying goes, a picture is worth a thousand words. If you can cut to the chase with a visually stunning display, do so. But there are visual displays that are stunning, and then there are the tired, hard-to-see visual displays that predominate at conferences. You can do better than most presenters by simply paying attention here and committing yourself to a good design. As with model section passages, keep a file of visual displays that work as models for your own presentations. Find a good guidebook to presenting data effectively (Evergreen 2018 , 2019 ; Schwabisch 2021) , and refer to it often.

Let me make a few suggestions here to get you started. First, test every visual display on a friend or colleague to find out how quickly they can understand the point you are trying to convey. As with reading passages aloud to ensure that your writing works, showing someone your display is the quickest way to find out if it works. Second, put the point in the title of the display! When writing for an academic journal, there will be specific conventions of what to include in the title (full description including methods of analysis, sample, dates), but in a public presentation, there are no limiting rules. So you are free to write as your title “Working-Class College Students Are Three Times as Likely as Their Peers to Drop Out of College,” if that is the point of the graphic display. It certainly helps the communicative aspect. Third, use the themes available to you in Excel for creating graphic displays, but alter them to better fit your needs . Consider adding dark borders to bars and columns, for example, so that they appear crisper for your audience. Include data callouts and labels, and enlarge them so they are clearly visible. When duplicative or otherwise unnecessary, drop distracting gridlines and labels on the y-axis (the vertical one). Don’t go crazy adding different fonts, however—keep things simple and clear. Sans serif fonts (those without the little hooks on the ends of letters) read better from a distance. Try to use the same color scheme throughout, even if this means manually changing the colors of bars and columns. For example, when reporting on working-class college students, I use blue bars, while I reserve green bars for wealthy students and yellow bars for students in the middle. I repeat these colors throughout my presentations and incorporate different colors when talking about other items or factors. You can also try using simple grayscale throughout, with pops of color to indicate a bar or column or line that is of the most interest. These are just some suggestions. The point is to take presentation seriously and to pay attention to visual displays you are using to ensure they effectively communicate what you want them to communicate. I’ve included a data visualization checklist from Evergreen ( 2018 ) here.

Ethics of Presentation and Reliability

Until now, all the data you have collected have been yours alone. Once you present the data, however, you are sharing sometimes very intimate information about people with a broader public. You will find yourself balancing between protecting the privacy of those you’ve interviewed and observed and needing to demonstrate the reliability of the study. The more information you provide to your audience, the more they can understand and appreciate what you have found, but this also may pose risks to your participants. There is no one correct way to go about finding the right balance. As always, you have a duty to consider what you are doing and must make some hard decisions.

The most obvious place we see this paradox emerge is when you mask your data to protect the privacy of your participants. It is standard practice to provide pseudonyms, for example. It is such standard practice that you should always assume you are being given a pseudonym when reading a book or article based on qualitative research. When I was a graduate student, I tried to find information on how best to construct pseudonyms but found little guidance. There are some ethical issues here, I think. [7] Do you create a name that has the same kind of resonance as the original name? If the person goes by a nickname, should you use a nickname as a pseudonym? What about names that are ethnically marked (as in, almost all of them)? Is there something unethical about reracializing a person? (Yes!) In her study of adolescent subcultures, Wilkins ( 2008 ) noted, “Because many of the goths used creative, alternative names rather than their given names, I did my best to reproduce the spirit of their chosen names” ( 24 ).

Your reader or audience will want to know all the details about your participants so that they can gauge both your credibility and the reliability of your findings. But how many details are too many? What if you change the name but otherwise retain all the personal pieces of information about where they grew up, and how old they were when they got married, and how many children they have, and whether they made a splash in the news cycle that time they were stalked by their ex-boyfriend? At some point, those details are going to tip over into the zone of potential unmasking. When you are doing research at one particular field site that may be easily ascertained (as when you interview college students, probably at the institution at which you are a student yourself), it is even more important to be wary of providing too many details. You also need to think that your participants might read what you have written, know things about the site or the population from which you drew your interviews, and figure out whom you are talking about. This can all get very messy if you don’t do more than simply pseudonymize the people you interviewed or observed.

There are some ways to do this. One, you can design a study with all of these risks in mind. That might mean choosing to conduct interviews or observations at multiple sites so that no one person can be easily identified. Another is to alter some basic details about your participants to protect their identity or to refuse to provide all the information when selecting quotes . Let’s say you have an interviewee named “Anna” (a pseudonym), and she is a twenty-four-year-old Latina studying to be an engineer. You want to use a quote from Anna about racial discrimination in her graduate program. Instead of attributing the quote to Anna (whom your reader knows, because you’ve already told them, is a twenty-four-year-old Latina studying engineering), you might simply attribute the quote to “Latina student in STEM.” Taking this a step further, you might leave the quote unattributed, providing a list of quotes about racial discrimination by “various students.”

The problem with masking all the identifiers, of course, is that you lose some of the analytical heft of those attributes. If it mattered that Anna was twenty-four (not thirty-four) and that she was a Latina and that she was studying engineering, taking out any of those aspects of her identity might weaken your analysis. This is one of those “hard choices” you will be called on to make! A rather radical and controversial solution to this dilemma is to create composite characters , characters based on the reality of the interviews but fully masked because they are not identifiable with any one person. My students are often very queasy about this when I explain it to them. The more positivistic your approach and the more you see individuals rather than social relationships/structure as the “object” of your study, the more employing composites will seem like a really bad idea. But composites “allow researchers to present complex, situated accounts from individuals” without disclosing personal identities ( Willis 2019 ), and they can be effective ways of presenting theory narratively ( Hurst 2019 ). Ironically, composites permit you more latitude when including “dirty laundry” or stories that could harm individuals if their identities became known. Rather than squeezing out details that could identify a participant, the identities are permanently removed from the details. Great difficulty remains, however, in clearly explaining the theoretical use of composites to your audience and providing sufficient information on the reliability of the underlying data.

There are a host of other ethical issues that emerge as you write and present your data. This is where being reflective throughout the process will help. How and what you share of what you have learned will depend on the social relationships you have built, the audiences you are writing or speaking to, and the underlying animating goals of your study. Be conscious about all of your decisions, and then be able to explain them fully, both to yourself and to those who ask.

Our research is often close to us. As a Black woman who is a first-generation college student and a professional with a poverty/working-class origin, each of these pieces of my identity creates nuances in how I engage in my research, including how I share it out. Because of this, it’s important for us to have people in our lives who we trust who can help us, particularly, when we are trying to share our findings. As researchers, we have been steeped in our work, so we know all the details and nuances. Sometimes we take this for granted, and we might not have shared those nuances in conversation or writing or taken some of this information for granted. As I share my research with trusted friends and colleagues, I pay attention to the questions they ask me or the feedback they give when we talk or when they read drafts.

—Kim McAloney, PhD, College Student Services Administration Ecampus coordinator and instructor

Final Comments: Preparing for Being Challenged

Once you put your work out there, you must be ready to be challenged. Science is a collective enterprise and depends on a healthy give and take among researchers. This can be both novel and difficult as you get started, but the more you understand the importance of these challenges, the easier it will be to develop the kind of thick skin necessary for success in academia. Scientists’ authority rests on both the inherent strength of their findings and their ability to convince other scientists of the reliability and validity and value of those findings. So be prepared to be challenged, and recognize this as simply another important aspect of conducting research!

Considering what challenges might be made as you design and conduct your study will help you when you get to the writing and presentation stage. Address probable challenges in your final article, and have a planned response to probable questions in a conference presentation or job talk. The following is a list of common challenges of qualitative research and how you might best address them:

Questions about generalizability . Although qualitative research is not statistically generalizable (and be prepared to explain why), qualitative research is theoretically generalizable. Discuss why your findings here might tell us something about related phenomena or contexts.
Questions about reliability . You probably took steps to ensure the reliability of your findings. Discuss them! This includes explaining the use and value of multiple data sources and defending your sampling and case selections. It also means being transparent about your own position as researcher and explaining steps you took to ensure that what you were seeing was really there.
Questions about replicability. Although qualitative research cannot strictly be replicated because the circumstances and contexts will necessarily be different (if only because the point in time is different), you should be able to provide as much detail as possible about how the study was conducted so that another researcher could attempt to confirm or disconfirm your findings. Also, be very clear about the limitations of your study, as this allows other researchers insight into what future research might be warranted.

None of this is easy, of course. Writing beautifully and presenting clearly and cogently require skill and practice. If you take anything from this chapter, it is to remember that presentation is an important and essential part of the research process and to allocate time for this as you plan your research.

Data Visualization Checklist for Slideshow (PPT) Presentations

Adapted from Evergreen ( 2018 )

Text checklist

Short catchy, descriptive titles (e.g., “Working-class students are three times as likely to drop out of college”) summarize the point of the visual display
Subtitled and annotations provide additional information (e.g., “note: male students also more likely to drop out”)
Text size is hierarchical and readable (titles are largest; axes labels smallest, which should be at least 20points)
Text is horizontal. Audience members cannot read vertical text!
All data labeled directly and clearly: get rid of those “legends” and embed the data in your graphic display
Labels are used sparingly; avoid redundancy (e.g., do not include both a number axis and a number label)

Arrangement checklist

Proportions are accurate; bar charts should always start at zero; don’t mislead the audience!
Data are intentionally ordered (e.g., by frequency counts). Do not leave ragged alphabetized bar graphs!
Axis intervals are equidistant: spaces between axis intervals should be the same unit
Graph is two-dimensional. Three-dimensional and “bevelled” displays are confusing
There is no unwanted decoration (especially the kind that comes automatically through the PPT “theme”). This wastes your space and confuses.

Color checklist

There is an intentional color scheme (do not use default theme)
Color is used to identify key patterns (e.g., highlight one bar in red against six others in greyscale if this is the bar you want the audience to notice)
Color is still legible when printed in black and white
Color is legible for people with color blindness (do not use red/green or yellow/blue combinations)
There is sufficient contrast between text and background (black text on white background works best; be careful of white on dark!)

Lines checklist

Be wary of using gridlines; if you do, mute them (grey, not black)
Allow graph to bleed into surroundings (don’t use border lines)
Remove axis lines unless absolutely necessary (better to label directly)

Overall design checklist

The display highlights a significant finding or conclusion that your audience can ‘”see” relatively quickly
The type of graph (e.g., bar chart, pie chart, line graph) is appropriate for the data. Avoid pie charts with more than three slices!
Graph has appropriate level of precision; if you don’t need decimal places
All the chart elements work together to reinforce the main message

Universal Design Checklist for Slideshow (PPT) Presentations

Include both verbal and written descriptions (e.g., captions on slides); consider providing a hand-out to accompany the presentation
Microphone available (ask audience in back if they can clearly hear)
Face audience; allow people to read your lips
Turn on captions when presenting audio or video clips
Adjust light settings for visibility
Speak slowly and clearly; practice articulation; don’t mutter or speak under your breath (even if you have something humorous to say – say it loud!)
Use Black/White contrasts for easy visibility; or use color contrasts that are real contrasts (do not rely on people being able to differentiate red from green, for example)
Use easy to read font styles and avoid too small font sizes: think about what an audience member in the back row will be able to see and read.
Keep your slides simple: do not overclutter them; if you are including quotes from your interviews, take short evocative snippets only, and bold key words and passages. You should also read aloud each passage, preferably with feeling!

Supplement: Models of Written Sections for Future Reference

Data collection section example.

Interviews were semi structured, lasted between one and three hours, and took place at a location chosen by the interviewee. Discussions centered on four general topics: (1) knowledge of their parent’s immigration experiences; (2) relationship with their parents; (3) understanding of family labor, including language-brokering experiences; and (4) experiences with school and peers, including any future life plans. While conducting interviews, I paid close attention to respondents’ nonverbal cues, as well as their use of metaphors and jokes. I conducted interviews until I reached a point of saturation, as indicated by encountering repeated themes in new interviews (Glaser and Strauss 1967). Interviews were audio recorded, transcribed with each interviewee’s permission, and conducted in accordance with IRB protocols. Minors received permission from their parents before participation in the interview. ( Kwon 2022:1832 )

Justification of Case Selection / Sample Description Section Example

Looking at one profession within one organization and in one geographic area does impose limitations on the generalizability of our findings. However, it also has advantages. We eliminate the problem of interorganizational heterogeneity. If multiple organizations are studied simultaneously, it can make it difficult to discern the mechanisms that contribute to racial inequalities. Even with a single occupation there is considerable heterogeneity, which may make understanding how organizational structure impacts worker outcomes difficult. By using the case of one group of professionals in one religious denomination in one geographic region of the United States, we clarify how individuals’ perceptions and experiences of occupational inequality unfold in relation to a variety of observed and unobserved occupational and contextual factors that might be obscured in a larger-scale study. Focusing on a specific group of professionals allows us to explore and identify ways that formal organizational rules combine with informal processes to contribute to the persistence of racial inequality. ( Eagle and Mueller 2022:1510–1511 )

Ethics Section Example

I asked everyone who was willing to sit for a formal interview to speak only for themselves and offered each of them a prepaid Visa Card worth $25–40. I also offered everyone the opportunity to keep the card and erase the tape completely at any time they were dissatisfied with the interview in any way. No one asked for the tape to be erased; rather, people remarked on the interview being a really good experience because they felt heard. Each interview was professionally transcribed and for the most part the excerpts are literal transcriptions. In a few places, the excerpts have been edited to reduce colloquial features of speech (e.g., you know, like, um) and some recursive elements common to spoken language. A few excerpts were placed into standard English for clarity. I made this choice for the benefit of readers who might otherwise find the insights and ideas harder to parse in the original. However, I have to acknowledge this as an act of class-based violence. I tried to keep the original phrasing whenever possible. ( Pascale 2021:235 )

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Methodology

What Is a Case Study? | Definition, Examples & Methods

What Is a Case Study? | Definition, Examples & Methods

Published on May 8, 2019 by Shona McCombes . Revised on November 20, 2023.

A case study is a detailed study of a specific subject, such as a person, group, place, event, organization, or phenomenon. Case studies are commonly used in social, educational, clinical, and business research.

A case study research design usually involves qualitative methods , but quantitative methods are sometimes also used. Case studies are good for describing , comparing, evaluating and understanding different aspects of a research problem .

When to do a case study, step 1: select a case, step 2: build a theoretical framework, step 3: collect your data, step 4: describe and analyze the case, other interesting articles.

A case study is an appropriate research design when you want to gain concrete, contextual, in-depth knowledge about a specific real-world subject. It allows you to explore the key characteristics, meanings, and implications of the case.

Case studies are often a good choice in a thesis or dissertation . They keep your project focused and manageable when you don’t have the time or resources to do large-scale research.

You might use just one complex case study where you explore a single subject in depth, or conduct multiple case studies to compare and illuminate different aspects of your research problem.

Case study examples
Research question	Case study
What are the ecological effects of wolf reintroduction?	Case study of wolf reintroduction in Yellowstone National Park
How do populist politicians use narratives about history to gain support?	Case studies of Hungarian prime minister Viktor Orbán and US president Donald Trump
How can teachers implement active learning strategies in mixed-level classrooms?	Case study of a local school that promotes active learning
What are the main advantages and disadvantages of wind farms for rural communities?	Case studies of three rural wind farm development projects in different parts of the country
How are viral marketing strategies changing the relationship between companies and consumers?	Case study of the iPhone X marketing campaign
How do experiences of work in the gig economy differ by gender, race and age?	Case studies of Deliveroo and Uber drivers in London

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Once you have developed your problem statement and research questions , you should be ready to choose the specific case that you want to focus on. A good case study should have the potential to:

Provide new or unexpected insights into the subject
Challenge or complicate existing assumptions and theories
Propose practical courses of action to resolve a problem
Open up new directions for future research

TipIf your research is more practical in nature and aims to simultaneously investigate an issue as you solve it, consider conducting action research instead.

Unlike quantitative or experimental research , a strong case study does not require a random or representative sample. In fact, case studies often deliberately focus on unusual, neglected, or outlying cases which may shed new light on the research problem.

Example of an outlying case studyIn the 1960s the town of Roseto, Pennsylvania was discovered to have extremely low rates of heart disease compared to the US average. It became an important case study for understanding previously neglected causes of heart disease.

However, you can also choose a more common or representative case to exemplify a particular category, experience or phenomenon.

Example of a representative case studyIn the 1920s, two sociologists used Muncie, Indiana as a case study of a typical American city that supposedly exemplified the changing culture of the US at the time.

While case studies focus more on concrete details than general theories, they should usually have some connection with theory in the field. This way the case study is not just an isolated description, but is integrated into existing knowledge about the topic. It might aim to:

Exemplify a theory by showing how it explains the case under investigation
Expand on a theory by uncovering new concepts and ideas that need to be incorporated
Challenge a theory by exploring an outlier case that doesn’t fit with established assumptions

To ensure that your analysis of the case has a solid academic grounding, you should conduct a literature review of sources related to the topic and develop a theoretical framework . This means identifying key concepts and theories to guide your analysis and interpretation.

There are many different research methods you can use to collect data on your subject. Case studies tend to focus on qualitative data using methods such as interviews , observations , and analysis of primary and secondary sources (e.g., newspaper articles, photographs, official records). Sometimes a case study will also collect quantitative data.

Example of a mixed methods case studyFor a case study of a wind farm development in a rural area, you could collect quantitative data on employment rates and business revenue, collect qualitative data on local people’s perceptions and experiences, and analyze local and national media coverage of the development.

The aim is to gain as thorough an understanding as possible of the case and its context.

In writing up the case study, you need to bring together all the relevant aspects to give as complete a picture as possible of the subject.

How you report your findings depends on the type of research you are doing. Some case studies are structured like a standard scientific paper or thesis , with separate sections or chapters for the methods , results and discussion .

Others are written in a more narrative style, aiming to explore the case from various angles and analyze its meanings and implications (for example, by using textual analysis or discourse analysis ).

In all cases, though, make sure to give contextual details about the case, connect it back to the literature and theory, and discuss how it fits into wider patterns or debates.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

Normal distribution
Degrees of freedom
Null hypothesis
Discourse analysis
Control groups
Mixed methods research
Non-probability sampling
Quantitative research
Ecological validity

Research bias

Rosenthal effect
Implicit bias
Cognitive bias
Selection bias
Negativity bias
Status quo bias

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Case Study Research

Jul 19, 2014

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Case Study Research. Dr. Julian Beckton. Introduction. An important approach to research within the qualitative tradition Widely used in social science research. (Not so much in natural sciences, but not unknown .) Defined by interest in the case , not by the methods (Stake, 2000)

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Presentation Transcript

Case Study Research Dr. Julian Beckton

Introduction • An important approach to research within the qualitative tradition • Widely used in social science research. (Not so much in natural sciences, but not unknown.) • Defined by interest in the case, not by the methods (Stake, 2000) • Most case studies use interpretive methods, but not exclusively.

What is a case study? • Focus on one (sometimes more) distinct incidence of a phenomenon. • Detailed, deep examination of that incidence • Study of the incidence in context • Representation of the case as experienced by those inside it (emic perspective) • AND a critical review of the case by the researcher (etic perspective)

3 functions of case study • Description • “I hope to demonstrate here that much of the political and educational rhetoric which surrounds the notion of comprehensiveness in this country ignores or is irrelevant to what actually goes on in schools” (Ball, 1981) • Explanation • Jane Jacobs in The Death and life of Great American Cities (1961) used the example of New York to explain the importance of parks, pavements, the importance of mixing land use and many other issues • Evaluation • “The present study was undertaken to look at the practices of some of the remaining one teacher schools, and what might be learned from them (Swidler, 2000)

Designing your case study • Establish your research problem – in particular, consider its questions and propositions • Select a case that will answer your research question. Consider if you are trying to confirm or disprove a proposition. (This may need some thought). Consider multiple case studies. • Consider your own role – what will your background and professional experience bring to the research? • Entry to the field – A critical and complex step in a case study. Who, how, what do you ask in first contact? How will you present yourself?

Over to you • Take your own research question or topic and spend a few minutes thinking about what sort of case you could study (Even if you don’t propose to do a case study). • Then describe your topic and your choice of case to your neighbour. Ask them to criticise your choice of case (what might it answer? What might it not answer? Can you see any ethical issues.

FOUR PERSPECTIVES ON ETHICS • Utilitarian ethics – greatest possible good to the greatest possible number. • Deontological ethics – actions judged by absolute values (e.g. justice, honesty, fairness) • Relational ethics – puts people first in that the researchers actions are always aimed at the good of the people in the case. • Ecological ethics – considers the larger social system of which the case forms a part. • None of these are ideal – what do you think the objections are?

Data collection • How much of yourself should you reveal to participants, and in the writing of the report? • Characteristic of case study data collection is that it is emergent. • Summary records of interactions can be very useful. • Think “finish to start”. • When do you stop collecting data? • Exhaustion of sources • Saturation of categories • Emergence of regularities • Overextension

Data analysis • Case studies tend to generate a lot of data. • Interpretational analysis (by far the most common) • Segmenting, categorising, coding, grouping • Structural analysis • What patterns are inherent in the data? (Very useful in revealing patterns of speech and thus social dynamics) • Reflective analysis • Relies on intuition and judgement – and on criticism. Sometimes used in team research projects

Validity and reliability • Postivist criteria • Audit trails – You need to be able to show what data you collected, how, how you categorised and coded it, how your codes contribute to your arguments, any notes you made about the process, what you intended to do and did, and how you chose your instruments, and how all these things are linked. At least include a sample in your methodology section. • Pattern matching. In an evaluative case study, does what is predict to happen, actually happen? • Interpretivist criteria • Plausibility, authenticity, credibility, relevance, usefulness, contextual completeness, researcher positioning, reporting style, triangulation/reconciliation, member checking, outlier analysis, longitudinal study, and representativeness

GENERALISABILITY DEBATE • “Such studies have such a total absence of control as to be of almost no scientific value… Any appearance of absolute knowledge, or intrinsic knowledge about singular, isolated objects is found to be illusory upon analysis…It seems well-nigh unethical at the present time to allow, as theses or dissertations in education case studies of this nature (i.e., involving a single group observed at one time only) (Campbell and Stanley, 1966, p 6-7) (Quoted in Flyvbjerg, 2006) • Break into two groups. Group 1 should try and come up with five reasons why you can generalise from case studies, and Group 2 should come up with five reasons why you shouldn’t.

Writing up a case study • Finalizing your definition • Remember you’re interested in the case. So you only use the data that answers your questions. • Reflective reporting • This is where you tell a story – using literary devices such as using point of view characters, focussing on a key event, reporting a “day in the life” and so on. Possibly risky for a PhD thesis, but done well, can be compelling. • Analytic reporting • Researcher’s voice subdued, tends to be objective, outside the study – stresses the etic perspective as much as the emic

Pros and Cons of Case study research • Often highly accessible to general reader • Context dependent and thus very “human” • Aids comparison with reader’s own situation (emic perspective) • Reveals researcher’s perspective (etic) • Useful for examining data outliers • Not easily generalisable (in the traditional sense at least) • Can pose ethical risks to participants • Highly labour intensive, and require high level language skills to identify concepts and themes

References • Ball, Stephen, J. (1981) Beachside Comprehensive: A case study of secondary schooling. Cambridge University Press, Cambridge • Flyvbjerg, Bent (2006) Five misunderstandings about Case_Study Research. Qualitative Inquiry 12 (2) 219-244 • Gall, Gall & Borg (2003) Educational research. Allyn & Bacon, Boston MA (Chapter 14 provided the outline for this session) • Gomm, Hammersley & Foster (eds.) (2000) Case Study Method. Sage, London University Library (300.72 cas) • Hammersley, Gomm & Foster, (2000) Case study and theory in Gomm, Hammersley & Foster (eds.) (2000) Case Study Method. Sage, London University Library (300.72 cas) • Jacobs, Jane (1961) The Death and Life of Great American Cities, Penguin, Harmondsworth UniversityLibrary (307.760973 jac) • Stake (2000) Case studies In. Denzin &Lincoln (eds) Handbook of Qualitative research (2nd ed.) Sage, Thousand Oaks, CA p 435-454) University Library (300.72 den) • Swidler, S. A. (2000) Notes on a country School Tradition: Recitation as an individual strategy. – Journal of Research in Rural Education (29) 517-544 • Yin, Robert (2009) Case Study Research,: Design and Methods, 4th. Ed. Sage, London University Library (300.72 yin)

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[Guide] How to Present Qualitative Research Findings in PowerPoint?

By: Author Shrot Katewa

As a researcher, it is quite pointless to do the research if we are unable to share the findings with our audience appropriately! Using PowerPoint is one of the best ways to present research outcomes. But, how does one present qualitative research findings using PowerPoint?

In order to present the qualitative research findings using PowerPoint, you need to create a robust structure for your presentation, make it engaging and visually appealing, present the patterns with explanations for it and highlight the conclusion of your research findings.

In this article, we will help you understand the structure of your presentation. Plus, we’ll share some handy tips that will make your qualitative research presentation really effective!

How to Create a Structure for your Qualitative Research Presentation?

Creating the right structure for your presentation is key to ensuring that it is correctly understood by your audience.

The structure of your Research Presentation not only makes it easier for you to create the document, it also makes it simple for the audience to understand what all will be covered in the presentation at the time of presenting it to your audience.

Furthermore, having a robust structure is a great way to ensure that you don’t miss out on any of the points while working on creating the presentation.

But, what structure should one follow?

Creating a good structure can be tricky for some. Thus, I’m sharing what has worked well for me during my previous research projects.

NOTE – It is important to note that although the following structure is highly effective for most research findings presentation, it has been generalized in order to serve a wide range of research projects. You may want to take a look at points that are very specific to the nature of your research project and include them at your discretion.

Here’s my recommended structure to create your Research Findings presentation –

1. Objective of the Research

A great way to start your presentation is to highlight the objective of your research project.

It is important to remember that merely sharing the objective may sometimes not be enough. A short backstory along with the purpose of your research project can pack a powerful punch ! It not only validates the reasoning for your project but also subtly establishes trust with your audience.

However, do make sure that you’re not reading the backstory from the slide. Let it flow naturally when you are delivering the presentation. Keep the presentation as minimalistic as possible.

2. Key Parameters Considered for Measurement

Once you’ve established the objective, the next thing that you may want to do is perhaps share the key parameters considered for the success of your project.

Every research project, including qualitative research, needs to have a few key parameters to measure against the objective of the research.

For example – If the goal of your project is to gather the sentiments of a certain group of people for a particular product, you may need to measure their feelings. Are they happy or unhappy using the product? How do they perceive the branding of the product? Is it affordable?

Make sure that you list down all such key parameters that were considered while conducting the qualitative research.

In general, laying these out before sharing the outcome can help your audience think from your perspective and look at the findings from the correct lens.

3. Research Methodology Adopted

The next thing that you may want to include in your presentation is the methodology that you adopted for conducting the research.

By knowing your approach, the audience can be better prepared for the outcome of your project. Ensure that you provide sound reasoning for the chosen methodology.

This section of your presentation can also showcase some pictures of the research being conducted. If you have captured a video, include that. Doing this provides further validation of your project.

4. Research Outcomes (Presenting Descriptive Analysis)

This is the section that will constitute the bulk of the your presentation.

Use the slides in this section to describe the observations, and the resulting outcomes on each of the key parameters that were considered for the research project.

It is usually a good idea to dedicate at least 1 or more slides for each parameter . Make sure that you present data wherever possible. However, ensure that the data presented can be easily comprehended.

Provide key learnings from the data, highlight any outliers, and possible reasoning for it. Try not to go too in-depth with the stats as this can overwhelm the audience. Remember, a presentation is most helpful when it is used to provide key highlights of the research !

Apart from using the data, make sure that you also include a few quotes from the participants.

5. Summary and Learnings from the Research

Once you’ve taken the audience through the core part of your research findings, it is a good practice to summarize the key learnings from each of the section of your project.

Make sure your touch upon some of the key learnings covered in the research outcome of your presentation.

Furthermore, include any additional observations and key points that you may have had which were previously not covered.

The summary slide also often acts as “Key Takeaways” from the research for your audience. Thus, make sure that you maintain brevity and highlight only the points that you want your audience to remember even after the presentation.

6. Inclusions and Exclusions (if any)

While this can be an optional section for some of the researchers.

However, dedicating a section on inclusions and exclusions in your presentation can be a great value add! This section helps your audience understand the key factors that were excluded (or included) on purpose!

Moreover, it creates a sense of thoroughness in the minds of your audience.

7. Conclusion of the Research

The purpose of the conclusion slide of your research findings presentation is to revisit the objective, and present a conclusion.

A conclusion may simply validate or nullify the objective. It may sometimes do neither. Nevertheless, having a conclusion slide makes your presentation come a full circle. It creates this sense of completion in the minds of your audience.

8. Questions

Finally, since your audience did not spend as much time as you did on the research project, people are bound to have a few questions.

Thus, the last part of your presentation structure should be dedicated to allowing your audience to ask questions.

Tips for Effectively Presenting Qualitative Research Findings using PowerPoint

For a presentation to be effective, it is important that the presentation is not only well structured but also that it is well created and nicely delivered!

While we have already covered the structure, let me share with you some tips that you can help you create and deliver the presentation effectively.

Tip 1 – Use Visuals

Using visuals in your presentation is a great way to keep the presentations engaging!

Visual aids not only help make the presentation less boring, but it also helps your audience in retaining the information better!

So, use images and videos of the actual research wherever possible. If these do not suffice or do not give a professional feel, there are a number of resources online from where you can source royalty-free images.

My recommendation for high-quality royalty-free images would be either Unsplash or Pexels . Both are really good. The only downside is that they often do not provide the perfect image that can be used. That said, it can get the job done for at least half the time.

If you are unable to find the perfect free image, I recommend checking out Dreamstime . They have a huge library of images and are much cheaper than most of the other image banks. I personally use Dreamstime for my presentation projects!

Tip 2 – Tell a Story (Don’t Show Just Data!)

I cannot stress enough on how important it is to give your presentation a human touch. Delivering a presentation in the form of a story does just that! Furthermore, storytelling is also a great tool for visualization .

Data can be hard-hitting, whereas a touching story can tickle the emotions of your audience on various levels!

One of the best ways to present a story with your research project is to start with the backstory of the objective. We’ve already talked about this in the earlier part of this article.

Start with why is this research project is so important. Follow a story arc that provides an exciting experience of the beginning, the middle, and a progression towards a climax; much like a plot of a soap opera.

Tip 3 – Include Quotes of the Participants

Including quotes of the participants in your research findings presentation not only provides evidence but also demonstrates authenticity!

Quotes function as a platform to include the voice of the target group and provide a peek into the mindset of the target audience.

When using quotes, keep these things in mind –

1. Use Quotes in their Unedited Form

When using quotes in your presentation, make sure that you use them in their raw unedited form.

The need to edit quotes should be only restricted to aid comprehension and sometimes coherence.

Furthermore, when editing the quotes, make sure that you use brackets to insert clarifying words. The standard format for using the brackets is to use square brackets for clarifying words and normal brackets for adding a missing explanation.

2. How to Decide which Quotes to Consider?

It is important to know which quotes to include in your presentation. I use the following 3 criteria when selecting the quote –

Relevance – Consider the quotes that are relevant, and trying to convey the point that you want to establish.
Length – an ideal quote should be not more than 1-2 sentences long.
Choose quotes that are well-expressed and striking in nature.

3. Preserve Identity of the Participant

It is important to preserve and protect the identity of the participant. This can be done by maintaining confidentiality and anonymity.

Thus, refrain from using the name of the participant. An alternative could be using codes, using pseudonyms (made up names) or simply using other general non-identifiable parameters.

Do note, when using pseudonyms, remember to highlight it in the presentation.

If, however, you do need to use the name of the respondent, make sure that the participant is okay with it and you have adequate permissions to use their name.

Tip 4 – Make your Presentation Visually Appealing and Engaging

It is quite obvious for most of us that we need to create a visually appealing presentation. But, making it pleasing to the eye can be a bit challenging.

Fortunately, we wrote a detailed blog post with tips on how to make your presentation attractive. It provides you with easy and effective tips that you can use even as a beginner! Make sure you check that article.

7 EASY tips that ALWAYS make your PPT presentation attractive (even for beginners)

In addition to the tips mentioned in the article, let me share a few things that you can do which are specific to research outcome presentations.

4.1 Use a Simple Color Scheme

Using the right colors are key to make a presentation look good.

One of the most common mistakes that people make is use too many colors in their presentation!

My recommendation would be to go with a monochromatic color scheme in PowerPoint .

4.2 Make the Data Tables Simple and Visually Appealing

When making a presentation on research outcomes, you are bound to present some data.

But, when data is not presented in a proper manner, it can easily and quickly make your presentation look displeasing! The video below can be a good starting point.

Using neat looking tables can simply transform the way your presentation looks. So don’t just dump the data from excel on your PowerPoint presentation. Spend a few minutes on fixing it!

4.3 Use Graphs and Charts (wherever necessary)

When presenting data, my recommendation would be that graphs and charts should be your first preference.

Using graphs or charts make it easier to read the data, takes less time for the audience to comprehend, and it also helps to identify a trend.

However, make sure that the correct chart type is used when representing the data. The last thing that you want is to poorly represent a key piece of information.

4.4 Use Icons instead of Bullet Points

Consider the following example –

This slide could have been created just as easily using bullet points. However, using icons and representing the information in a different format makes the slide pleasing on the eye.

Thus, always try to use icons wherever possible instead of bullet points.

Tip 5 – Include the Outliers

Many times, as a research project manager, we tend to focus on the trends extracted from a data set.

While it is important to identify patterns in the data and provide an adequate explanation for the pattern, it is equally important sometimes to highlight the outliers prominently.

It is easy to forget that there may be hidden learnings even in the outliers. At times, the data trend may be re-iterating the common wisdom. However, upon analyzing the outlier data points, you may get insight into how a few participants are doing things successfully despite not following the common knowledge.

That said, not every outlier will reveal hidden information. So, do verify what to include and what to exclude.

Tip 6 – Take Inspiration from other Presentations

I admit, making any presentation can be a tough ask let alone making a presentation for showcasing qualitative research findings. This is especially hard when we don’t have the necessary skills for creating a presentation.

One quick way to overcome this challenge could be take inspiration from other similar presentations that we may have liked.

There is no shame in being inspired from others. If you don’t have any handy references, you can surely Google it to find a few examples.

One trick that almost always works for me is using Pinterest .

But, don’t just directly search for a research presentation. You will have little to no success with it. The key is to look for specific examples for inspiration. For eg. search for Title Slide examples, or Image Layout Examples in Presentation.

Tip 7 – Ask Others to Critic your Presentation

The last tip that I would want to provide is to make sure that you share the presentation with supportive colleagues or mentors to attain feedback.

This step can be critical to iron out the chinks in the armor. As research project manager, it is common for you to get a bit too involved with the project. This can lead to possibilities wherein you miss out on things.

A good way to overcome this challenge is to get a fresh perspective on your project and the presentation once it has been prepared.

Taking critical feedback before your final presentation can also prepare you to handle tough questions in an adept manner.

Final Thoughts

It is quite important to ensure that we get it right when working on a presentation that showcases the findings of our research project. After all, we don’t want to be in a situation wherein we put in all the hard-work in the project, but we fail to deliver the outcome appropriately.

I hope you will find the aforementioned tips and structure useful, and if you do, make sure that you bookmark this page and spread the word. Wishing you all the very best for your project!

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Lighting design for lanna buddhist architecture: a case study of suan dok temple, chiang mai, thailand.

1. Introduction

2. literature review, 2.1. nighttime cultural tourism, cultural heritage and lighting design, 2.2. lanna buddhist temples, 3. materials and methods, 3.1. site and setting, 3.2. qualitative data collection: initial users’ requirements, 3.3. lighting design process, 3.3.1. site survey and digital documentation, 3.3.2. lighting design simulation, 4.1. important architectural elements and their symbolic meanings, 4.2. site survey: existing lighting practices, 4.3. initial users’ requirements, 4.3.1. cultural heritage and conservation factors, 4.3.2. cultural tourism management factors.

Religious tourism—An establishment of the First Theravada Buddhism in Lanna;
Faith-based tourism—A faith presentation of Kru Ba Si Vichai, a famous Lanna abbot who influenced Lanna religious and social development;
Ecotourism—A nature-based tourism activity that focuses on the establishment of Saun Dok temple from King Kue Na’s royal flower garden; and
Architourism—An exploration of architectural design elements, history, and urban settlement.

4.3.3. Operation and Maintenance Factors

4.3.4. ideas for the new lighting design scheme, 4.4. proposed lighting design scheme, 4.4.1. overall lighting design criteria and concept, 4.4.2. proposed luminance hierarchy, luminaire selection and luminaire locations, 4.4.3. proposed lighting design scheme and estimated electricity charge, 4.4.4. proposed lighting installation details.

Luminaires must not be installed directly on the historic structure. For the current design scheme, most luminaires around the chedis are placed on the floor, mounted on movable bases which can be adjusted later;
As many outdoor luminaires do not possess any glare protection equipment, to minimize glare, lighting design should incorporate glare shields to prevent direct observation of the light source in the line of sight ( Figure 12 );
When possible, luminaires should be installed on existing platforms such as pedestals or poles to minimize an on-site construction process that may cause damage to the historic structure; and
The height of the new lamp posts should not exceed the height of the vihara’s roof eave. This is to ensure that the luminaire installation would not cause any visual distraction for the heritage site.

5. Discussion

Participatory Design Process: The study finds that stakeholder participation at an early design stage provides a practical understanding of important issues which have never been discussed in a typical lighting design process. Through a participation process for community stakeholders, the lighting project is consistent with the principles of sustainable cultural tourism development. While this research interviewed only a small number of participants, it can be argued that the process resonates with real life design practice where only a small number of stakeholders are involved. Data analysis uncovers initial users’ requirements under three themes: cultural heritage and conservation, cultural tourism management, as well as operation and maintenance. These comments are later developed into a specific criteria and concept for the lighting design of the Lanna Buddhist temple as a cultural heritage site, a cultural tourism destination, and a Buddhist monastery. Nevertheless, personal observations show that the social structure varies from place to place. Lighting designers should have creative and agile minds to manage unexpected and complex events.
Representation of lighting design: Simulating the lighting environment with a computer program is an important step that can help reduce the design experimentation time and save budget. In this study, many realistic rendering images of lighting design scenes are created. As limited architectural documents exist for Suan Dok temple, tremendous efforts have been placed on developing proper architectural drawings and digital models for lighting design simulation. Nevertheless, this laborious effort has paid off, as the realistic rendering images were able to capture and relay the essence of the design concept, allowing stakeholders to immerse themselves in the proposed design. It also provides a platform for discussion on lighting design feasibility and construction possibilities.
Storytelling: Storytelling is an important tool for communication in tourism, as it enriches the visitors’ experiences. The communication of stories that combines the perception of the real place, when connected with the experiences and backgrounds of each person, is crucial. This study uses light a medium to communicate and translate both tangible and intangible cultural heritage values. The light layering approach allows various storylines to be told, covering a wide range of visitors. Stories not only raise visitors’ awareness of the heritage value, but also contribute to the sustainability of tourist destinations. Each Lanna Buddhist temples has its own history and stories. Lighting designers may consider integration of contextual stories with the lighting design.
Lanna Buddhist cosmology: From an analysis, it is found that most Lanna Buddhist temples share a common characteristic: the belief in Buddhist cosmology. In the context of Lanna culture, the temple’s layout reflects the importance of the center of the universe. This symbolic meaning is represented by the main chedi, which is the principal element in temple premise. From the main axis, surrounding elements are modeled to create a completeness of the floor plan according to cosmological beliefs. In this study, lighting design is used to promote the physical form of unique Lanna Buddhist architecture, emphasizing the rhythm of the architectural elements by luminance hierarchy assignment. Important architectural elements and symbols that are noticeable during the day should also be highlighted at night. As the material used in Lanna Buddhist temple architecture varies from place to place, selection of light with various correlated color temperature should be carefully considered.
Architectural Conservation: Due to the importance of Lanna Buddhist sites, the lighting installation should be considered in relation to the activities of the area by reducing the impact of the installation directly on the physical structure of the building and the built environment in the cultural heritage area. For projects involving historical sites, this research suggests that early consultation with cultural conservation experts is essential for lighting design development. Consideration should be given for the issue of luminaire selection and installation that fosters cultural heritage authenticity.
Operation and Maintenance: The analysis shows that, in additional to a beautiful nighttime image that reflects the cultural heritage value of Lanna Buddhist temples, operation and maintenance of the lighting system also contributes to a successful and sustainable lighting design project. In this study, three lighting design scenes are proposed as an energy reduction technique. Preliminary calculation of the electricity charge is essential, as it gives the building owner an approximation of operating cost. Other ecological friendly design options such as the use of renewable energy and advanced lighting control systems should be further explored.
Environmental sustainability: Light pollution can cause a negative impact on wildlife and human beings. Unfortunately, it is often overlooked in the lighting design process. In this study, most luminaires are placed at ground level to eliminate the negative impact on heritage structure. While this design choice can contribute to sky glow, this research proposes multiple lighting design scenes, with recommendations to turn on lights based on functional needs. This approach aims to reduce light pollution, reduce energy consumption, and extend the lifespan of lamps. As previous research has suggested that a challenge for combining modern illumination with history is finding balance between the conservation of a historic scene and meeting expectations for illuminance quantity and quality [ 29 ], when designing light for a living historic city, this research advocates for adding environmental sustainability to this balance equation. Due to the project time constraints, this research also suggests that more lighting design options should be explored to provide possible exterior heritage lighting design solutions that balance aesthetics and environmental impact.

6. Conclusions and Suggestions

Author contributions, institutional review board statement, informed consent statement, data availability statement, acknowledgments, conflicts of interest.

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Click here to enlarge figure

	Architectural Elements	Characteristics	Symbolic Meaning/Story
1.	The chedis
	1.1 Main Chedi	The main chedi with a bell-shape structure is covered with a brass-sheet plate. The main chedi is raised on a platform with an arch-gate on each cardinal direction. The arch-gate is decorated with mythical flora and fauna patterns.
	1.2 Minor Chedis	The bell-shaped structure in the Lanna style with an elevated base and traditional recessed-corner pattern. The Phrajao Tanjai Chedi on the west side of the main chedi has four niches to enshrine Phrajao Tanjai Buddha statues in four directions.	The minor chedis reinforces the temple planning based on Buddhist cosmology. The Lanna-style castle chedi—According to the belief, the Buddha statues in Phrajao Tanjai chedi are casted within 24 h and can bring success to worshippers.
2.	The vihara
	2.1 Vihara’s East Façade	The vihara’s east façade displays four main columns, which is a typical style for Lanna Buddhist temples. The façade is decorated with gold-gilded low-relief wooden ornaments. The concrete roof structure frame follows Lanna’s traditional load-transferring timber roof structure, the ‘ma-tang-mai’.
	2.2 Vihara’s Pillars	The pillars are decorated with stucco and mirrors, supporting eaves with naga-figured corbels.	The number of vihara’s pillars symbolizes the grace of three jewels of Buddhism—Buddha, Dharma, and Sangha.
	2.3 Roof	Stacked in three layers, the distinctly large roof surface reflects modern construction technology. The roof ridge is decorated with swan figures.
3.	Arch gate (Soom Pra Too Khong)
		Gate structures are located on the north, east, and south temple wall. The structure is topped with 3 spires and decorated with Lanna’s traditional ornaments.	The arch gate marks the transition to sacred space, representing an entrance to Himavana legendary forest, which is prominently mentioned in Lanna Buddhism.
4.	Low wall surrounding Buddhawas Zone
		The low wall (Kam Phang Keaw) is located around the Buddhawas zone, especially around the chedis and the south side of the vihara. There are small holes on the wall for placing ‘Pang Prateep’, Lanna style ceramic candle-holders.	The wall symbolizes the boundary of universe in Buddhist cosmology. It also marks the sacred area of the temple ground.

Lighting Design Issues	Description
Overall illuminated atmosphere
Luminaire selection
Luminaire location
Operation and maintenance

	Architectural Elements	Expected Luminance Ratio Level	Calculated Luminance (cd/m )		Calculated Average Luminance Ratio Level	CIE 234:2019 Recommended Luminance (cd/m )
	Architectural Elements	Expected Luminance Ratio Level	Max.	Average	Calculated Average Luminance Ratio Level	Max	Average
1.	Main chedi	10	150.0	24.96	10.00	pass	pass
2.	Minor chedis	5	45.3	17.82	7.14	pass	pass
3.	Vihara’s columns	3	47.8	10.52	4.21	pass	pass
4.	Vihara’s roof	1	12.5	2.60	1.04	pass	pass
5.	Vihara’s base	1	37.7	2.19	0.88	pass	pass
6.	Low wall	1	20.3	1.87	0.75	pass	pass
7.	Vihara’s east facade	3	34.4	9.37	3.75	pass	pass
8.	Vihara’s east façade ornaments	5	120.0	18.81	7.54	pass	pass

Luminaire Installation Location and Aiming	Visualization
1. Vihara’s East and West Façade: Decorative elements, columns, and base

2. Vihara’s North and South Façade: Roof, columns, and base

3. Main chedi and minor chedis: Base, dome, spire, parasol, arch-gate

4. Phrajao Tanjai Chedi: Base, dome, spire, jewel, niche

5. Arch-gate: Base, arch, spires

	Description	N. of Luminaires	Power (W)	Luminous Flux (lm)	CCT (K)
1. Vertical elements	UL_1 Vihara’s east façade columns	6	36	3192	4500 K
	UL_2 Vihara’s north and south façade columns	28	21	901	3000 K
	UL_3 Minor chedis spire	8	110	9116	3000 K
	UL_4 Main chedi body	8	110	8883	3000 K
	UL_5 Main chedi spire	8	150	10,972	3000 K
	UL_6 Minor chedis recessed corner	40	6	330	3000 K
	UL_7 Arch-gate door frame	8	6	330	4500 K
2. Plana elements	FL_1 Main chedi dome	2	150	13,095	3000 K
	FL_2 Vihara façade	2	150	13,095	3000 K
	FL_3 Vihara roof	16	50	3731	3000 K
	FL_4 Minor chedi dome	16	110	9116	3000 K
	FL_5 Arch-gate base	4	110	9116	4500 K
3. Horizontal elements	LL_1 Vihara base	30	5	400	4500 K
	LL_2 Main chedi base	8	5	400	4500 K
	LL_3 Low wall	51	5	400	4500 K
4. Point elements	AL_1 Vihara east pediment ornaments	6	36	2850	3000 K
	AL_2 Main chedi gate	8	6	330	3000 K
	AL_3 Main chedi naga step	8	6	330	3000 K
	AL_4 Arch-gate spire	32	12	1117	4500 K
5. General light	GL_1 Vihara	2	360	18,721	4500 K
5. General light	GL_2 Chedis	2	360	18,721	3000 K

Scene	Operating Period	Operating Hours (Hrs.)	Lighting Power Consumption (W/Hour)	Estimated Electricity Charge (THB/Hour)	Estimated Electricity Charge per Period (THB)
1. night mode	22:00–06:00	8	2680	9.64	77.18
2. regular event	18:00–19:00 and 21:00–22:00	2	7697	27.71	55.42
3. important event	19:00–21:00	2	10,393	37.41	74.83
per day					207.43
per month					6222.96

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Share and Cite

Tayhuadong, L.; Inkarojrit, V. Lighting Design for Lanna Buddhist Architecture: A Case Study of Suan Dok Temple, Chiang Mai, Thailand. Sustainability 2024 , 16 , 7494. https://doi.org/10.3390/su16177494

Tayhuadong L, Inkarojrit V. Lighting Design for Lanna Buddhist Architecture: A Case Study of Suan Dok Temple, Chiang Mai, Thailand. Sustainability . 2024; 16(17):7494. https://doi.org/10.3390/su16177494

Tayhuadong, Lattapon, and Vorapat Inkarojrit. 2024. "Lighting Design for Lanna Buddhist Architecture: A Case Study of Suan Dok Temple, Chiang Mai, Thailand" Sustainability 16, no. 17: 7494. https://doi.org/10.3390/su16177494

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Case Report
Open access
Published: 02 September 2024

Two identical twin pairs discordant for longstanding anorexia nervosa and OSFED: lived experience accounts of eating disorder and recovery processes

Rosiel Elwyn 1 ,
Marie Williams 2 ,
Eloise Smith 3 &
Sophie Smith 4

Journal of Eating Disorders volume 12 , Article number: 127 ( 2024 ) Cite this article

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Research into the risk of anorexia nervosa (AN) has examined twin pairs to further the understanding of the contributions of genetics, trait inheritance, and environmental factors to eating disorder (ED) development. Investigations of twin experiences of EDs have been biologically-based and have not considered the qualitative, phenomenological aspects of twin experiences. A gap in the literature exists regarding understanding of discordant twins with EDs. This research was developed in response, with the aim to deepen understanding of AN in discordant twins and to create novel ideas for further research and testing. The case studies presented in this article provide lived experience insights of two identical discordant twin pairs: one twin pair discordant for longstanding AN and one twin pair discordant for ‘atypical’ AN (the twin with AN has recovered). The perspectives and experiences of each co-twin (one with AN and one without) explore a number of factors that may have contributed to twin discordance in these cases, and how each twin has responded to the impact of AN in their lives. Through use of first-person accounts in case study presentation, this article centres social justice values of lived experience leadership and involvement in research. This article aims to extend current knowledge and understanding of EDs in discordant twins, particularly regarding risk for ED development, ED duration, diagnosis and treatment, and recovery processes.

Introduction

Experiences of eating disorders (EDs) have been studied in siblings and twins, particularly regarding biological risks and correlates for ED development [ 1 , 2 , 3 , 4 , 5 , 6 , 7 ]. Family, twin, and adoption studies have indicated a pattern of complex trait inheritance for ED development influenced by a combination of genetic and environmental factors [ 8 , 9 , 10 , 11 , 12 ]. Heritability estimates for AN among twins range from 48 to 74% [ 13 ], and approximately 17–46% of the variance in AN may be accounted for by nonshared environmental factors, such as life events (i.e., trauma and adversity), differential parental relationships, peer group experiences, and body weight teasing [ 14 , 15 , 16 , 17 ]. A multitude of biopsychosocial factors are theorised to contribute to the cause, maintenance, and barriers or facilitators of treatment and recovery of AN, with varying levels of environmental and biological load [ 18 , 19 ]. A ‘perfect storm’ of biopsychosocial risk factors may arise whereby an individual is born with specific biological, neurocognitive and psychological predisposing traits, that then interact with their environment [ 18 , 19 , 20 , 21 ]. For example, a person may have a biological predisposition toward anxious, obsessive traits [ 22 , 23 ]. Early exposure to traumatic or stressful experiences influence structural and functional brain changes; stress regulation; neuroplasticity; sensitivity to reward and punishment; and stress response, including disordered eating [ 24 , 25 , 26 ]. Brain changes during and after puberty may contribute to increased worry and perfectionism [ 18 , 27 , 28 ]. During periods of heightened stress, dysregulated stress reactivity may lead to energy and appetite changes, and a person’s anxious, obsessive neurocognitive traits may lead to restrictive eating and avoidant behaviours to reduce anxiety [ 18 , 28 ]. Sociocultural influences (i.e., diet culture), heightened sensitivity to reward and punishment, and the neurobiological effects of malnutrition (i.e., increased anxiety and stress; homeostatic, neuroendocrine, neurotransmitter, and gut microbiome dysregulation) may maintain a cycle of restrictive eating [ 18 , 29 ].

Emerging research suggests that risk of ED development in twin pairs is elevated by environmental factors that may be common in twin development and birth, such as a restricted intrauterine environment, and pre- and perinatal and obstetric complications [ 30 , 31 , 32 , 33 , 34 ]. These developmental factors may impact brain structure, metabolic and gut microbial development [ 35 , 36 , 37 , 38 ]. For twins, different exposures during development and delivery [ 36 , 37 , 39 , 40 , 41 , 42 ] and differing birth weights [ 43 , 44 , 45 , 46 ] may be part of environmental factors that influence AN discordance (i.e., one twin has the condition and the other does not; discordance).

The developmental stage at which biopsychosocial stressors occur may determine the timing of onset, type, and duration of stress effects on AN risk, which may influence AN development/non-development in discordant twins. This includes hormone and energy changes during puberty [ 47 , 48 , 49 , 50 , 51 ], and exposure to adversity and trauma [ 14 , 19 , 52 ]. Multiple stress exposures and sociocultural-political factors (i.e., marginalisation, social disadvantage, stigma) may create additive effects [ 53 , 54 , 55 , 56 , 57 ]. Individuals may also have a neurobiological predisposition to susceptibility to neurobiological changes that occur as a consequence of trauma exposure [ 19 , 26 , 58 , 59 ], such as susceptibility through transgenerational trauma via multiple gene‒environmental pathways [ 60 , 61 ] and molecular factors [ 26 , 59 ]. In identical twins, therefore, despite increased heritability, unique interaction between the biological and psychological vulnerabilities of each individual twin and environmental stressors may lead to discordant development for low- or higher-weight (‘atypical’) AN, and differing ED duration.

Although perspectives and definitions differ [ 62 , 63 , 64 , 65 ], longstanding (or ‘severe-enduring’) EDs have been used to categorise EDs based on illness duration (often a pattern of chronic ED, with various thresholds used ranging from 3, 5, 7 or 10 or more years), differing core symptom profile, a lack of response or lasting improvement to past treatments, clinical and functional impairment [ 65 , 66 , 67 , 68 , 69 , 70 ] Footnote 1 . Building on these understandings from lived experience perspectives have encompassed dimensions of a vulnerable sense of self, global impoverishment, and compromised quality of life [ 71 , 72 , 73 ]. Differences in recovery or longstanding course may be influenced by AN subtype (i.e., possible reactive vs. endogenous AN) [ 74 ]. Differences may also exist among longstanding patients according to severity and complexity [ 70 , 75 ]. Recovery processes are complex, precarious, and navigated daily, and may be threatened by social discourses, power structures and other life stressors [ 73 , 76 , 77 , 78 , 79 , 80 , 81 ]. This may lead to fluctuations in recovery, motivation and hope that favour or threaten healing and wellbeing [ 73 , 77 , 82 , 83 , 84 ]. When twins are discordant for ED, these recovery processes may affect both twins in multiple ways.

The majority of twin studies are biologically focused, and a gap in the literature exists regarding qualitative, phenomenological research of discordant twin experiences of longstanding ED and ED recovery. Lived experience insights in ED research and treatment can improve current knowledge and understanding of ED experiences and highlight complexities and research gaps [ 85 , 86 , 87 , 88 ]. Lived experience leadership and engagement in mental health research has been progressively recognised as an ethical imperative, anti-oppressive practice, and best-methods approach [ 85 , 89 , 90 , 91 , 92 ]. However, there continue to be gaps and barriers to lived experience involvement in ED research [ 85 , 93 ]. There have been limited accounts of personally experiencing longstanding EDs and ‘atypical’ AN in the academic literature [ 94 , 95 , 96 , 97 ] or of first-person accounts of having a family member with a longstanding ED [ 98 ]. No known first-person accounts of discordant longstanding EDs among siblings or twins currently exist. This article expands on the current understanding of the experiences of longstanding EDs, sibling experiences of EDs, and EDs in twins, by providing case study accounts of discordant AN experiences in two identical twin pairs, authored from a first-person lived experience perspective.

This article centres the experiences of two twin pairs discordant for AN and explores factors influencing the development and persistence of AN. One twin pair (RE and MW) are discordant for longstanding AN, and one twin pair (SS and ES) are discordant for ‘atypical’ AN. Experiences of AN between twin-siblings and both discordant twin pairs are compared, to identify aspects of convergence/divergence, as well as factors that may indicate risk for or resilience to AN development, longstanding AN duration, or recovery.

The co-authors utilised a qualitative phenomenological approach involving: collaborative autoethnography [ 99 , 100 ] with reflexive thematic analysis [ 101 , 102 ]. Autoethnographic research methods involve the use of the author/s inclusion of their personal experiences to inform and explore issues within research [ 103 , 104 , 105 ]. Reflective personal experiences [ 103 ] offer interpretation, nuance, and advancement current knowledge [ 104 ]. These personal experiences allow further discussion of the intersections in socio-cultural and political factors that relate to a current issue [ 104 ]. Collaborative autoethnography (while an oxymoronic term), involves a duo or team of researchers who ‘collectively and cooperatively’ [ 99 ] “pool their lived experiences on selected sociocultural phenomena and collaboratively analyse and interpret them for commonalities and differences” [ 106 ]. Collaborative autoethnography extends the reach of individual autoethnography and addresses some of its methodological and ethical issues through its multivocal approach to data generation, analysis, and writing, and through multidimensional interpretation [ 99 , 100 ].

Lived experience cannot be captured solely in codes and categories [ 107 ], however coding can be used to group and retrieve data with similar characteristics or meaning [ 108 ] in order to create themes. Rather than themes emerging clearly from the data, the generation of themes is an active, creative, and interpretative process with authors taking an active role in identifying patterns and clusters [ 109 ].

The authors held ten online meetings, to discuss their experiences of AN discordance via the following protocol using collaborative autoethnography and reflexive analysis:

Authors purposefully composed written narratives of their experiences of AN. This was done to allow each individual to reflect on aspects of their experience that were important to them, which could later be identified in thematic analysis. Written narratives were pooled together for collective autoethnography.

Five recorded, unstructured online meetings were held for the authors to freely describe and reflect on their experiences of AN. There were no pre-conceived topics to approach their experiences, other than that they were reflecting on the experiences of twin discordance for AN, with attention to how these experienced converged between and within twin pairs. The transcripts, together with free-form written narratives about their experiences, provided the data for analysis.

Digital transcripts from the first five meetings were developed and gathered verbatim.

86 pages of digital transcript (a composite of verbal and written narratives) were generated.

A novel reflexive analysis was devised for the analysis of the digital transcript in order to generate themes collaboratively between authors, with attention to conferring throughout the process. This included:

Individual, dyadic and group reflection of co-twin discordance, comparing and contrasting of experiences of AN illness and for twin discordance (RE & SS as twins with AN; MW & ES as twins without AN).

Co-construction of preliminary themes [ 110 , 111 ] using inductive semantic (descriptive/meta) coding [ 102 , 109 ], taking an immersive approach.

Co-authors agreed upon the conferring, grouping, and consolidation of meta themes and via an iterative process, which evolved via further online meetings and via email. Consensus was established on themes and sub-themes.

A selection of transcribed quotes and written material were selected to embody these themes and sub-themes (see Supplementary Material).

The process of thematic analysis generated 6 themes and 22 subthemes (Table 3 ).

Subthemes were categorised into a meta-theme based on how they were connected to this experience. For example, Personal Values and Stigma Resistance influenced insight into illness and motivation for healing. Gastrointestinal and Sensory Factors influenced the experience of food, eating and AN, and AN influenced gastrointestinal problems and food aversions. Sub-themes were also intertwined within a larger meta-theme; for example Diagnosis, Health Literacy, and Stereotypes were intrinsic to insight and acceptance of AN.

The following two tables (Tables 1 , 2 ) contain basic background information for both twin pairs that may be relevant for the discordant development of AN, (i.e., premature birth, psychiatric diagnoses, injuries/trauma/illness). Given that developmental weight suppression is known to influence AN development, maintenance, treatment response and recovery [ 112 , 113 , 114 , 115 , 116 , 117 , 118 , 119 , 120 , 121 ], information on highest/lowest/current BMI, and most recent hospital discharge BMI (if applicable) are also included. Four images accompany the tables as visual representations of the background information, and can be regarded as simplified ‘line biographies’ of factors relevant to AN discordance and duration between co-twins and each twin pair (Figs. 1 , 2 , 3 , 4 and Tables 1 , 2 ).

Life events biography (RE: Living Experience of Longstanding AN)

Life events biography (MW: Discordant for Longstanding AN)

Life events biography (SS: Lived Experience of ‘Atypical’ AN)

Life events biography (ES: Discordant for ‘Atypical’ AN)

The excerpts below contain our first-person accounts of the impacts of AN on our lives Footnote 2 .

Twin Pair 1 are discordant for longstanding AN: RE has longstanding AN (25 years duration), MW has no lifetime history of AN or ‘atypical’ AN.

Notable aspects of convergence: Anxiety and obsessive-compulsive characteristics.

Notable aspects of divergence for AN development: Exposure to traumatic experiences, gender identity, internalisation of twin trope, body ideals, sensory sensitivity, gastrointestinal problems, co-occurring mental health problems, psychiatric treatment, iatrogenic trauma, self-injury and suicide attempts.

Twin Pair 2 are discordant for OSFED (‘atypical’ AN): SS has recovered from ‘atypical’ AN (6 years duration), ES has no lifetime history of AN or ‘atypical’ AN.

Notable aspects of divergence for AN development: Gastrointestinal problems, autoimmune condition, internalisation of twin trope, internalisation of health-related beliefs, and body ideals.

In these two cases, the following themes and subthemes were significantly related to discordant AN experiences in twin pairs (Table 3 ).

Individual and relational identity

The ‘twin’ identity.

In both cases of twin discordance, RE and MW; and SS and ES described “negative” experiences in early childhood of being treated as a single entity—“the twins”. They experienced “alienation and othering” as part of being seen as a “package deal”. Twins were often expected to share the same minds, bodies, and lives, which influenced perceptions of their AN discordance by strangers, close others, family members and clinicians.

Whenever MW and my identity and experiences diverged, they accused me of lacking insight and being in denial, and attacked and undermined aspects of my identity as well as the credibility and legitimacy of my AN. - RE (Living Experience of Longstanding AN)

In childhood and adolescence, RE felt that misunderstandings about twin discordance and stereotypes about AN led to a sense of their “whole identity constantly being pathologised” and their AN being “utterly misunderstood.”

ES described how detailed comparisons made between twins were used as a means to differentiate them. This had a negative impact on sense of self, which led to self-consciousness and a heightened focus on physical traits as “These details weren’t always aspects about yourself you wanted to hear (e.g. “ES has a rounder face”)”. Clothing choices were an important part of identity and relationship as twins:

We wanted to be seen as separate people, whilst still dressing and behaving in a way that fortified a look and feeling of twinship. - ES (Discordant for ‘Atypical’ AN)

Separation and individuation within the twin relationship were an important part of identity development. This included navigating social dynamics of comparison, having separate space, and making choices about clothing similarity. For RE and MW, the expectation that they would have identical lives led to invalidations of RE’s sexuality, gender identity and AN by family members, friends, and clinicians as “unnatural”, and a misperception that RE’s identity and AN represented an attempt to inauthentically individuate from MW. Expectations of twin identities, experiences, genetics and development led to RE having an identity imposed on them by others, whereby they were not given the space to express their true self and feel accepted.

Twin tropes

In both cases of twin discordance for AN, twin-siblings experienced twin tropes. RE and MW; and SS and ES described how people would respond to their physical similarities and mannerisms with fascination and an expectation to possess unusual intuition, telepathy, foresight, or some other supernatural powers in connection to each other, such as sensing or predicting each other’s pain. Both ‘negative’ and ‘positive’ twin tropes related to AN development for both RE and SS. For RE, twin tropes also intersected with stigma for mental health concerns:

From my earliest memories of childhood, I remember being told our birth-story and being shown photos of us in humidicribs in the NICU…photos of us showed our feeding tubes and our tiny bodies—my skin had been translucent, and my body appeared to be a deep red colour…Relatives often joked that this indicated I was the “evil twin”. Although we’d both been premature and a low birthweight, of the two of us, I’d been a slightly higher weight—and a frequent joke was I’d been causing MW to “starve”...as a child, I’d felt that I should spend the rest of my life starving myself to make up for being the “evil twin” and almost starving my sister to death before we were born. A lot of peers said things like…“You’re the crazy one, so she’s the good one and you’re the evil one”…it was that stigma of mental health problems being equated with ‘bad’ moral character—I was ‘mad’ so I was the ‘evil twin’. - RE (Living Experience of Longstanding AN)

My family would refer to me as “the healthy one”, which provided more justification to continue eliminating foods I perceived to be ‘unhealthy’. - SS (Lived Experience of ‘Atypical’ AN)

For RE, being typecast as the ‘evil’ and ‘parasitic’ twin contributed to food-related shame and guilt, reinforcing food restriction as a means to self-punish and atone for inherent moral ‘wickedness’. RE’s physical signs of mental/emotional distress was taken as an outward indication of ‘bad’ moral character, which strengthened ‘evil twin’ tropes and acted as a double stigma. For SS, being characterised as the ‘healthy’ twin reinforced orthorexia-type eating beliefs and food restriction.

Impact of AN discordance on the twin identity

In these cases, AN discordance had a complex, multi-layered impact on the twin identity.

Strangers stopped asking if MW and I were twins, and would ask if MW was my aunt, older sister or older cousin… I realised how significantly I physically differed in comparison to MW and my developmental age, which was upsetting and alarming to me. It hurts both of us in such a complex way. It’s a special kind of grief for what you’ve lost. It’s shocking when you realise that the damage has been that great and you differ so much now that people no longer see you as twins. It’s really hard on her because it makes her scared and also makes her feel differently about herself, which is really painful, because it’s my illness that’s done that. - RE (Living Experience of Longstanding AN)

As we reached our late teens and RE’s health declined, the ‘twin identity’ became slightly more complicated…I would often get extremely upset looking at photos of us together...I would also feel worried and scared when I was around RE or would hug them and feel how frail and emaciated they were. It’s felt complicated to discuss having a twin sibling with new friends or colleagues. People invariably ask if we look alike, and then I have to navigate a complex, personal, and potentially upsetting conversation. - MW (Discordant for Longstanding AN)

The ED experience was the first part of our lives that separated ES and I. On the one hand, it was a sad and lonely experience to not share with ES. However, I also remember almost enjoying the fact that the ED distinguished us. - SS (Lived Experience of ‘Atypical’ AN)

Physical discordance caused by AN led to perceptions of twin-siblings as having different ages and different relationships to one another. Physical disparity led to twin-siblings feeling worried, upset, sad, scared, and lonely, and created a unique sense of “loss and grief”. For SS, physical discordance due to AN also provided a sense of individual identity, which she experienced as positive.

Puberty and maturation

Gendered body ideals.

Gendered body expectations, body ideals, and gendered objectification influenced experiences of puberty.

After being aware of MW going through puberty, I felt as though it was a ‘ticking time bomb’...my restrictive eating and exercise intensified…I was actively trying to delay puberty…I wanted to feel androgynous or genderless. - RE (Living Experience of Longstanding AN) A complicating factor during puberty was ES and I being avid ballet dancers. The ideal of having fuller breasts as a woman stands in stark contrast to the ideal ‘ballet figure’, where having very small breasts is desirable…losing weight and feeling shame about my bust was connected to trying to meet both body ideals. - SS (Lived Experience of ‘Atypical’ AN)

For RE, distress during puberty was influenced by gender dysphoria, which resulted in restrictive eating as a means to strive toward pubertal suppression, gender congruence, and a non-binary body ideal. For SS, AN development was influenced by perceived pressure to conform to conflicting gendered body ideals which led to body shame.

Trauma, puberty, and AN

For RE, experience of puberty also intersected with trauma exposure which influenced AN development.

I dreaded the thought of female maturation and all that I regarded as being associated with it—namely, being sexualised, objectified, and unsafe... I dealt with constant commentary about minute detail of my body as a twin, and felt frequently dehumanised…I’d experienced abuse, and also dehumanisation and trauma in other ways—such as surviving an abduction attempt by a stranger at the age of 8. Despite escaping and reporting the abduction attempt to adults, I was blamed for having been alone at the time, and was told that it was my fault if the predator went on to victimise others. I did not receive trauma support, and felt deep self-hatred and self-blame over it. I used restriction as an active way to delay puberty in an attempt to feel a sense of control over my physical development and the way other people perceived me. I felt unsafe in a world where I had experienced sexual objectification and violence…and I didn’t want that to get worse. - RE (Living Experience of Longstanding AN)

Trauma exposure led to use of restrictive eating as a coping strategy when there was insufficient support and resources to cope with traumatic experiences. Self-starvation and the physical consequences of AN (i.e., emaciation) provided a method of suppressing pubertal development, and sense of control over the perceptions of others (i.e., attempt to reduce risk of sexual objectification and sexual/physical violence). This highlights the importance of early trauma, lack of trauma support, and internalised blame in AN development in identical twins discordant for AN. As a twin, constant exposure to physical comparisons (i.e., physical similarities and small differences between twin-siblings) may have increased objectification, self-objectification, and dehumanisation in early childhood, which intersected with multiple early traumatic experiences, heightening risk for AN development. Twin comparisons and sense of objectification may be a specific risk factor within AN development for twins.

In-school weighing and perceived health

Experiences of puberty and perceived health were interlinked with educational influences and experiences, such as in-school weighing and health education. For SS, “normalisation” of weight gain in puberty was “lacking”. Having to weigh herself during physical education classes led to “distress”. In-school weighing triggered a “focus on weight loss, fixation on BMI, and fear of gaining weight” in association with “perceived unhealthiness”.

Developmental age and milestones

All authors were sensitive to developmental age and milestones, and the impact of AN on development.

The misperception clinicians had that I wanted to “remain childlike” was reinforced by a difference in milestones between MW and I during adolescence. However, the reasons behind it were misinterpreted...I didn’t want to get my [driver’s] licence because I was afraid I’d blackout from malnutrition and injure or kill someone. I also didn’t want to leave MW at home alone...opportunities for independence and life experiences always came secondary...if we couldn’t both be safe, I did what I could to ensure she’d be away from harm. - RE (Living Experience of Longstanding AN)

I have found my constant anxiety around RE’s intake of food and liquids difficult to ‘switch off’…I’ve found myself repeatedly prompting colleagues to drink water or eat something—purely out of habit—or acted overly ‘mothering’ to others, which can become annoying to them…It occupies so much space in our lives that it can be easy to lose sight of the fact that these experiences and needs are not common to most people. - MW (Discordant for Longstanding AN)

I remember having certain ‘role-playing personas’ in childhood, where I’d act as if I was ES’s child, and she often felt like a ‘big sister’ or even ‘mother figure’ to me. These roles were further pronounced through my ED. - SS (Lived Experience of ‘Atypical’ AN)

The physical impacts of AN led a sense of twins RE and SS being developmentally ‘behind’ their twin-siblings. AN also affected cognitive-emotional developmental congruence between twins, by impacting achievement of milestones and sense of role; twins without AN felt “older”, and twins with AN felt developmentally delayed.

Exposure to trauma and adversity

For RE, exposure to trauma and adversity influenced body image development in AN. When RE experienced early trauma, self-starvation and its consequences were used as an embodied coping strategy to “to look and feel as though my whole body could be knife-like, signalling danger to anyone who was a potential threat. …I also hoped that my body could signal that I was in danger”. Bullying and discrimination also led to AN as a way to “narrow my focus to food, exercise, or self-harm, so I could dissociate from the fear and vulnerability”.

Differential exposure to trauma as twins also affected MW in the form of survivor guilt:

[Spoken to RE] Everything bad that could happen seemed to happen to you...I just felt guilt—why did it always happen to you, and not me too? - MW (Discordant for Longstanding AN)

Longstanding AN as its own form of ongoing trauma also affected both twin-siblings (RE & MW), indicating the importance of recognising longstanding duration as specific trauma in ED treatment.

As years passed with AN, I felt trapped and traumatised from being unable to heal and recover. I experienced trauma from hospital, suicide attempts and interactions with police and paramedics. The physical damage of the ED, living in ongoing medical instability, going to sleep and feeling as though I may not wake up, and seeing the constant fear and impact of my AN on my sister’s life—has all become its own form of ongoing trauma. - RE (Living Experience of Longstanding AN)

In these cases, different exposure to trauma and adversity appears to be a significant factor in twin discordance for AN and in longstanding duration. Longstanding AN also creates its own form of specific trauma.

Embodiment disturbance

Differences in embodiment and embodiment disturbance influenced body image in RE’s experience of longstanding AN, but was not described in SS’s experience. RE experienced significant embodiment disturbance, such as "attempting to gauge the proportions of my face and body with body-checking, to check if it was shifting, because I couldn’t get a sense of where my body was in space”, “not knowing what my body’s dimensions were”, and feeling a sense of “shock and disorientation” upon seeing their reflection or photographs, due to anticipating their body to “more closely resemble my sister’s”. MW described supporting RE to manage this embodiment disturbance by using functional body appreciation strategies and drawing attention to how RE's AN had created a disparity from their genetic and physical similarities as twins.

Differences in gender identity between twins may lead to differing experiences of embodiment, and influence body dysmorphia and AN. RE described how “intertwined body dysmorphia and gender dysphoria” led to body dissatisfaction and body dysmorphia, which resulted in “using food and water restriction and more exercise to avoid my body, try to control it, or try to feel a better sense of and connection to it”. These experiences may have been interrelated with interoceptive differences as RE described how “this food restriction also intersected with my sensory eating and food aversions”.

Sociocultural influences and social responses

For RE and MW, sociocultural influences and social responses influenced their experience of AN as discordant twins. These social dynamics also affected other family members, who, as described by RE, “felt guilt and shame that they’re being judged as having ‘failed’ at caregiving with one twin (me) and would often say that they felt judged by strangers and clinicians”. For RE, this led to guilt, and created “an additional barrier in seeking treatment”. Sociocultural influences and social responses were particularly significant in the context of longstanding AN. RE and MW described the need to manage stigma and threatening behaviours that negatively impacted RE’s wellbeing and daily functioning:

Strangers have also reached out and felt my ribcage or the ridges of my spine or hipbones or grabbed my wrists and commented on how easy they would be “snap”; “like toothpicks”...I’ve frequently been photographed or filmed by strangers using their mobile phones while they make comments about food—seemingly in an effort to upset me… - RE (Living Experience of Longstanding AN)

Acquaintances or strangers will frequently feel entitled to comment freely on their body or even touch them...At vulnerable times (e.g. following a hospital admission) it can affect RE’s attempts for recovery. - MW (Discordance for Longstanding AN)

Negative and threatening social interactions led to RE feeling upset, exhausted, distressed, and scared, “isolating myself afterwards, panicking about leaving the house”. MW felt “anxious”, and “angry” about the “hostile” and “callous” judgments and treatment of RE, leading to her becoming “protective and hypervigilant”, attempting to “shield” RE from threatening and stigmatising behaviour, and “checking in every few hours” when away from RE. For SS, healthism and diet culture beliefs were a significant sociocultural influence on her AN development as she became “concerned about my size and what it meant for my health”. For SS, initially, “body dissatisfaction and physical appearance was not a driving factor for my ED—I attempted to lose weight because I equated gaining weight in puberty with health problems...although I did hold idealised body-shape beliefs, like believing I needed to have a flat stomach”. For SS, BMI categories became a fixation for health concerns, as she feared being “pushed into an 'unhealthy' BMI category”.

Functional body appreciation and body acceptance

For RE, MW’s support helped in decreasing reliance on using layered clothing to hide their emaciation and self-harm scars. This promoted greater body acceptance and “reduced body shame and body dysmorphia”. Awareness of the harmful impacts of AN led to greater functional body appreciation for MW, which improved body dissatisfaction:

Seeing the terrible misery an ED has caused RE and other patients…I resolved to always be grateful for my health and what my body allows me to do…whenever I get into a self-critical or body-hating frame of mind, I’ll remind myself that I love and appreciate my body and that I’m grateful for my health. - MW (Discordant for Longstanding AN)

For SS, functional body appreciation and body acceptance was an important stage of recovery:

“[Spoken to RE] I think accepting my body and thinking about my body more for what it could do rather than what it ‘should be’ and ‘should look like’ was important for me. Also starting to really care about my health and think about what my ED was doing to my health—rather than just connecting my health to aesthetics and weight, shape and BMI was important. I had to learn about how those things weren’t the same.” - SS (Experience of ‘Atypical’ AN)

Body acceptance and functional body appreciation had protective factors and positive benefits for AN in discordant twins, both for twins without AN, and as a stage of healing for twins with AN.

Food and eating

Gastrointestinal and sensory factors.

Although experiences were different, gastrointestinal problems were common to both twins with AN, which influenced dietary patterns. For RE coeliac disease symptoms impacted AN development—RE became “more highly attuned to gastrointestinal sensations because of the pain and discomfort” and were hypervigilant to coeliac symptoms “from seeing other family members struggle” with coeliac symptoms. Sensory-based eating and food aversions also influenced RE’s longstanding AN, and gastrointestinal problems increased food aversion. RE identified that multiple family members on their paternal side have autistic and ADHD traits and have “strong preferences and routines around food and food aversions”, which may reflect a trait inheritance. For both RE and SS, treatment factors also interacted with AN and gastrointestinal and/or sensory factors. For RE, this resulted in unmet needs, and for SS, AN-related motivations interfered with treatment for gastrointestinal problems:

A frequent issue for me in treatment was the separation between AN and ARFID. My sensory eating patterns, food aversions, interoceptive differences and their relationships with my eating and gastrointestinal symptoms were unexplored in early AN treatment. - RE (Living Experience of Longstanding AN)

In mid-2016, I became unwell with a gastrointestinal infection…I initially followed the dietitian’s advice post-discharge to restore weight…I’d feared I’d keep gaining weight ‘forever and ever’ if I continued with the meal plan, so I returned to restrictive eating and lost the weight. - SS (Lived Experience of ‘Atypical’ AN)

The bi-directional relationship of longstanding duration/AN severity, gastrointestinal and physical problems (i.e., starvation syndrome, reactive hypoglycemia, gastroparesis), sensory factors and food aversions also impacted hope for recovery:

After having AN for over two decades now, the physical reactions my body has when I eat solid food often makes me feel hopeless about making progress with eating and moving away from my dependence on nutritional supplements…physical symptoms reinforce food restriction, aversions, and anxiety about feeling sick after eating. - RE (Living Experience of Longstanding AN)

In these cases, gastrointestinal problems and sensory differences/ARFID intersections appeared to be key factors in discordant AN development in twins, and may have been a factor in longstanding duration or recovery.

Dietary patterns and health-related beliefs

For both authors with AN, dietary patterns and health-related beliefs were influenced by family members. RE recalled their mother having “a strong belief in ‘withstanding pain’ rather than accessing medical help, which I internalised”, eating, making and serving “organic unprocessed food”, and their father “crash dieting repeatedly” and “criticising and commenting on our food choices”. SS recalled her mother “trying weight-loss diets, exercise programs and ‘body sculpting’ technology” and having a “separate dinner because she was always on a specific diet”. SS also cited “diet culture” and “school” as influences that contributed to “orthorexic beliefs” and her ED.

RE developed a belief that their family was financially and food insecure, due to “my parents’ asceticism, thriftiness, and often being told to forage in the garden for food or to drink water to stave off hunger”. Medical neglect formed part of RE’s belief that their family was financially insecure, as RE interpreted their parents’ medical avoidance into a belief that “we couldn’t afford it, and that I didn’t deserve medical treatment because my health wasn’t a priority”. RE “began to associate hunger with guilt and shame” and felt anxiety about using resources, consuming food, and experiencing bankruptcy and houselessness. This led to “learning to delay eating and to override my hunger cues” and a fixation on food:

I often crept into the kitchen at night to open cupboards and stare at ingredients…to hold it and feel comforted that it was still there. I remember hiding a block of palm sugar in my room when I was 8 years old and being comforted by that. - RE (Living Experience of Longstanding AN)

Vegetarian and vegan diets were related to AN development in both cases. RE was “motivated to consume a plant-based diet for animal welfare and to reduce climate impacts”, however also wanted to “reduce food-related uncertainty and decision paralysis”, and “reduce scrutiny about restrictive eating”. SS described the decision to adopt a pescatarian diet as “a ‘legitimate’ way to restrict food”. Both RE and SS were aware that family members’ and friends’ vegetarianism/veganism would normalise their diet change. For SS, this helped her AN “fly under the radar", however RE’s family members were concerned that their AN would worsen with a vegan diet. When RE became “too medically unstable” to continue with veganism, they “began consuming nutritional supplement drinks” which led to improved intake. SS gave up her pescatarian diet as part of recovery.

Coping strategies and food-related beliefs

The authors used a variety of coping strategies to challenge food-related beliefs and manage and make changes to their eating patterns. Both RE and SS described processes of “working to unlearn healthism and weight stigma” which supported “healing and rebuilding trust” in food-body relationships. RE also turned to online “neurodivergent and disability spaces” to adopt strategies for sensory needs and food aversions that were not being addressed in their treatment.

MW described how she supported RE as a sibling-carer by modelling “healthy food relationships”, encouraging and eating with them, and discussing “different food options to re-introduce”. MW acknowledged that change was difficult for RE in the context of their longstanding AN due to “physical barriers that exist now—sometimes after eating, it’s like their body goes into shock”. For MW, it was important for both of them to “maintain a sense of hope while navigating the seriousness of RE’s AN”. She and RE used humour and gentle teasing, which helped RE “feel less threatened about having someone try to support them…less judged, blamed, guilty or pressured” particularly in the context of RE’s history of iatrogenic harm and internalised stigma, and helped RE “pay attention to their body cues since they struggle to recognise and then feel as if they ‘should’ attend to these needs”. Together these beliefs and strategies indicate a complex process of navigating life with and recovery from AN.

Anosognosia, insight and healing

Diagnosis, health literacy and stereotypes.

Low ED health literacy and stereotypes of AN experiences (both amongst clinicians and in the public) were a barrier to early recognition, early diagnosis, early intervention and treatment access, and also led to difficulties with accepting diagnosis.

RE described how inpatient and outpatient mental health practitioners attributed their AN to depression, suicidality, psychosis, mania, anxiety, or PTSD at varying times. RE was also told by clinicians that they were “reluctant to diagnose me with AN since it was “highly stigmatising”, and I was “too young for an ED”. RE was given other reasons that AN was ruled out as a diagnosis, which included: “I was “too intelligent” to have an ED, I wasn’t “obsessed with appearance”, “had insight” and “knew I was thin” and therefore, couldn’t have AN”. RE was also told that “AN was “highly genetic” and as I was a twin and MW didn’t have AN, my eating problems had to stem from “my psychotic delusions or depression”. Ultimately, RE experienced 10 years of untreated AN—when hospitalised in a critical state, delayed treatment influenced acceptance of AN as a diagnosis: “The inpatient team estimated I was days from death. I struggled to believe them, after years of being told that AN was something else”.

ED stereotypes also inhibited recognition of SS’s ‘atypical’ AN:

I knew that a lot of her choices and habits led to an overall picture of abnormality around food, exercising and eating, but it was not as ‘extreme’ as the picture of anorexia or bulimia I held. - ES (Discordant for ‘Atypical’ AN)

SS experienced 4.5 years of untreated ‘atypical’ AN before receiving a diagnosis and beginning therapy. Delayed treatment and ED stereotypes influenced acceptance of her diagnosis:

I wasn’t ‘underweight’ according to BMI standards and wasn’t engaging in purging behaviours, so I’d ruled out anorexia nervosa and bulimia nervosa diagnoses as a possibility—I was unaware of other ED diagnoses. After being diagnosed with OSFED (‘atypical’ AN)…it was difficult to reconcile the ‘picture’ of an ED in my head with my own experience. - SS (Lived Experience of ‘Atypical’ AN)

These experiences emphasise how ED stereotypes, low ED health literacy, and low genetic/epigenetic literacy in the public and amongst clinicians can result in delayed diagnosis and treatment, and influence illness acceptance/denial.

Disconnectedness and insight

Illness-related insight was a complex experience, involving cognitive/emotional recognition, connection to degree of illness severity, and differing levels of internal/external recognition.

RE described denying illness and refusing treatment out of the desire to avoid consequences:

I felt desperate to hold on to every bit of freedom and independence, and the sense of safety AN gave me…I was terrified of experiencing more trauma in hospital, and often thought I’d rather die of starvation and heart failure than be subjected to the overwhelming fear and powerlessness of being in restraints and seclusion again… Sometimes I’d be scared and want help, but the consequences of acknowledging how ill I was and facing treatment again were scarier than death to me, so I’d say I “felt fine”. - RE (Living Experience of Longstanding AN)

Desensitisation was experienced by both the twin with AN, twin discordant for AN, other family members, and medical personnel, which influenced management of longstanding AN. RE described illness-related desensitisation by clinicians as impacting both their treatment and their own sense of being unwell:.

The whole concept of ‘insight’ becomes really weird, because it depends on other people too. The sense of urgency vanishes for medical professionals when they see you in the same condition all the time...it’s something that never really gets talked about when you have a longstanding ED, but other people stop seeing how unwell you are, and that makes it a million times harder to manage it. There’s so much self-advocacy involved to even have regular blood tests and ECGs. My GP will literally say “Why are you back so soon? Are you sick?” again and again, and I’m like “Yes! Did you forget? I still have the same life-threatening illness!” - RE (Living Experience of Longstanding AN)

MW described RE’s illness-related insight and desensitisation in longstanding AN, and family members’ desensitisation as influencing RE’s treatment engagement:

During our 20s, things felt very out of control, with RE undergoing multiple hospitalisations…At the worst points in their illness, it felt like the ED would take hold, and RE was trapped behind an iron wall of despair, denial and anger—they felt completely unreachable…completely dissociated from how desperately ill they were. Although we still get very scared and alarmed by RE’s physical state, our family has become slightly desensitised and accustomed over many years to how critically unwell they are, so it can be difficult to recognise the changes that indicate a more dangerous deterioration. - MW (Discordant for Longstanding AN)

Illness-related insight and desensitisation affects not only the individual with AN, but others close to them (carers, clinicians), which influences insight, illness acceptance, motivation for recovery, and treatment engagement. This is an important consideration for longstanding AN and management of chronic illness.

Self-compassion

Self-compassion was a critical factor in improving longstanding AN and an important stage in recovery from ‘atypical’ AN. To RE, a “major turning point” in “beginning to heal” was starting personalised therapy with a psychologist that involved “trauma-focused and compassion-focused work, schema therapy, and harm-minimisation”. Through this therapeutic work, RE described starting to “come out of complete immersion in trauma ‘survival mode’” and experiencing greater self-connection, and reconnection “with the world outside of the sense of sanctuary AN afforded”. Self-compassion for RE also involved acceptance of the impact of their longstanding AN on MW’s life. Acceptance represented an ongoing process of self-kindness and self-forgiveness:

I have to keep forgiving myself and accept and let go…blaming and torturing myself over it does nothing but feed the cycle of the AN, self-destruction, and suicidality—which also causes MW more pain. The best thing I can do is keep showing myself compassion and care, and keep focusing on healing. - RE (Living Experience of Longstanding AN)

MW described how increased self-compassion had led to RE choosing to go to hospital when for refeeding and medical stabilisation when in a critical state “for the first time…they didn’t have to be under a treatment order”. For SS, self-compassion involved appreciating and “being kind to my body, which meant accepting it for what it was…letting go of controlling it and the thin body ideal”. In these cases, self-compassion was an important part of improved quality of life in AN and recovery from ‘atypical’ AN in discordant twins.

Comparison and self-connectedness

For RE, the comparisons MW made between their bodies as identical twins was a critical supportive strategy in coping with body dysmorphia and desensitisation—increasing self-connection and self-compassion. These comparisons helped RE “break through the depth of my detachment and desensitisation”. When MW would compare their bodies, RE would imagine MW “being in the same physical state…as I connected with the deep sense of love and protectiveness I felt for my sister’s wellbeing…it was as though I was tapping into an ability to feel empathy for my own body and concern for my own survival”. This increasing self-connection led to RE becoming “more motivated about steps I could make in recovery”. RE began to prioritise their health, “developed more caution about my physical limits” and became “more engaged in harm-minimisation” and with medical services.

Body comparisons and twin discordance also impacted MW’s wellbeing in complex ways. MW described how comparing their features and bodies was often helpful in supporting RE to “disrupt ED thoughts” and that “reminding them of their affection for me and my wellbeing can remind RE to care for themselves too”. However, she expressed how RE’s AN had also made her “differently about my own body—occasionally I feel like a giant lumbering creature next to RE, or feel frustrated or embarrassed when strangers assume I am much older or that we have a different relationship (e.g. that I am an aunt or cousin) based on our physical differences.” MW described managing these feelings and thoughts by “letting them go in the moment”, and shifting focus to “the more important things—health and wellbeing for both RE and I, and how best to support RE’s recovery”. These experiences indicate that making physical comparisons in AN discordant twins can support increased self-connectedness and self-compassion for the twin with AN. Discordance for AN, however, may also lead to negative self-comparisons for the twin without AN particularly in the context of others’ misperceiving the relationship between the twin-siblings due to the physical impacts of AN.

Personal values, stigma resistance, advocacy and affirmation

In both cases of AN, healing, therapy engagement, and recovery were supported by re-connection with personal values, resisting stigma, advocacy, and affirmation. For RE, engaging in “in social justice-oriented work and lived experience work” facilitated re-connection with their values and increased self-compassion by creating a sense of dissonance; “human rights and social justice were critically important values to me, yet I was denying myself the right to safety and fundamental needs”. Connection with LGBTIQA+ community and resources also led to identity affirmation and an increased sense of gender euphoria and body pride. This resulted in reduced “body dysmorphia, body dissatisfaction, and restrictive eating…helped me let go of the highly thin genderless body ideal I held”. MW stated that RE’s involvement in lived experience work and advocacy led to reduced self-stigma and shame and increased openness, resulting in improved understanding among family members: “It became easier for us as a family to support them and understand what they needed from us”.

RE also described a process of combating stigma and decreasing shame about longstanding AN. This involved “reframing AN to myself in the light of chronic illness and disability—looking at how much shame and ableism I’ve internalised”. RE described goals of “feeling less shame about being visible”, and making choices to take part in activities when others expressed a belief that they shouldn’t participate until they recovered (i.e., being photographed with friends/family members, attending events/academic conferences). For RE, it was important to “learn to love and have kindness for the body I’m in now, and the ill, disabled person I am —not the theoretical ‘recovered’ body and ‘recovered’ self that doesn’t exist, and may not come to exist”.

For SS, recovery from ‘atypical’ AN involved “educating myself the need for social justice approaches to ED”. SS also described a shift in priorities and reconnection with her “true values”. Reconnecting with personal values, resisting stigma, and affirming identity were important stages in healing and recovery from AN/’atypical’ AN.

Service navigation

Familial impact of an and treatment.

The impact of AN and mental health and medical treatment had a significant impact on the family, including on the twin relationship (i.e., suicide attempts, feelings of betrayal), and specifically, family members experiencing fear of stigma regarding twin discordance for AN. For authors RE and MW, these impacts shifted throughout the course of RE’s longstanding AN.

RE stated that initially, their attendance at CYMHS led to family tension; “frequent arguments, screaming and accusations”, which included a fear of stigma, “Our parents felt any disclosures I made about “family issues” would be a “betrayal”…drawing shame and judgement onto the family”. RE made efforts in increase ED health literacy for their family, by providing their parents and MW with information about research on AN, including epigenetic, biological and environmental factors that “may have contributed to my and MW’s discordance”. This information helped RE’s parents “feel less as though they might be judged and blamed for my AN development, particularly for having ‘failed at caring for one twin’”. The reduction in perceived stigma resulted in less pressure on MW to act as a mediator between family members and clinicians. Decreased perceived stigma also led to RE’s parents advocating for RE to attend medical appointments when acutely medically unwell and to monitor their health, “which marked a huge change from their history of medical avoidance”.

RE’s AN greatly impacted MW as a twin-sibling, leading to “constant anxiety”, “frequent panic attacks” and feeling “powerless” particularly when RE was in hospital. When RE self-harmed and attempted suicide, MW described feeling “shocked, hurt, confused and betrayed” and feeling that she had “failed to help them”. She also described feelings of abandonment and rejection: “I felt upset that as their twin and the closest person in their life, I wasn’t ‘enough’ for RE to recover or want to stay alive…I didn’t think I would ever be able to survive the grief”. Over time, these feelings and perspectives shifted:

I began to think about this situation with less of a focus on myself and our relationship...I gradually understood more about the terrible internal struggle RE was going through...I tried to support RE without thinking of their recovery as a reflection of success or failure on my part. - MW (Discordant for Longstanding AN)

ED health literacy—with a focus on aetiology and epigenetics that may differentiate AN development, may be particularly important for discordant twins and their families, and support family functioning and treatment engagement by decreasing perceived stigma. Twin siblings also need support for coping with the trauma of their sibling’s ED, and significant gaps exist in the resources and services offered to families.

Weight stigma and iatrogenic harm

Iatrogenic harm occurred in a multitude of ways within ED treatment settings, including weight-stigma, ED stereotypes, lack of compassion, use of restraints and seclusion, over-use of medication, and contradictory expectations regarding treatment engagement (i.e., ED services as reserved for medical crisis only).

RE described how during inpatient admissions, nurses regularly expressed “praise and envy for my ‘thinness’” which occurred even when receiving nasogastric and nasojejunal tube feeding. RE navigated weight stigma in treatment settings by talking directly to nurses about their misunderstandings of AN as a ‘diet’ or ‘extreme willpower’, and resisted trivialisation and stereotypes of AN with the support of MW. For SS, weight stigma reinforced her ‘atypical’ AN when she was praised for her “efforts, ‘willpower’, and ‘healthy lifestyle” in everyday life, which “reinforced and sanctioned” restrictive eating. SS addressed weight stigma by learning about “social determinants of health and weight science”, which led to an improved relationship with food and an “immense sense of freedom”.

RE and MW experienced other forms of iatrogenic harm over years of treatment for RE’s longstanding AN. MW expressed “shock that RE even survived these years of treatment” and “a great deal of regret that I didn’t do more to prevent the terrible trauma and impacts of these hospitalisations and medications”, which highlights how internalised blame forms part of the shared trauma of iatrogenic harm for family members. MW stated that lack of treatment options and past traumatic experiences of hospitalisations had become a “huge barrier for RE to continue towards recovery and to re-engage in treatment.”

MW also described feelings of betrayal regarding medical services and staff:

I feel angry and incredulous over the actions of doctors and nurses—using chemical or physical restraints when they were excessive or unwarranted, or making callous or disdainful comments towards RE as their patient…the lack of compassion of medical professionals has often been astounding. I’ve made formal complaints to several hospitals. - MW (Discordant for Longstanding AN)

MW described a “catch-22 within the medical system” where RE would be “encouraged to seek treatment and hospitalisation, but then told not to ‘over-use’ or ‘over-burden’ hospitals except in a health crisis”. MW stated there was “little support” for ED patients outside of hospitals, “especially for ED patients with a long duration. We end up searching desperately…there’s nothing for patients with chronic ED”.

A recent inpatient admission for RE was a crucial step in “repairing some trust in medical services after years of treatment trauma”. This involved the treating team collaborating with RE, promising not to subject RE to an involuntary treatment order, agreeing on accommodations to help RE feel safer in hospital and to reduce sensory distress, involving MW in treatment discussions, and allowing MW to sleep in RE’s hospital room overnight to increase a feeling of safety. Navigating and addressing iatrogenic harm in AN was important for treatment access and recovery in these cases, particularly in the context of longstanding AN.

Sibling role

Discordant twin siblings (MW, ES) had significant, complex roles in providing support for their siblings with AN (RE, SS) at differing stages. When RE began experiencing hospitalisations for AN, MW “wasn’t part of treatment decisions or discussions with clinicians…but our parents would come to me for advice and insight”. This led to an experience of being stuck in a difficult and stressful role “as a negotiator, mediator or peacekeeper” and feelings of guilt and moral conflict. MW later had a more active part in RE’s treatment as a sibling-carer. RE described how MW provided support around medical appointments and medication, transport, checking in about medical stability, and buying food and nutritional supplements. MW had also helped RE “develop my Psychiatric Advance Health Directive for use in hospitalisations” and assertively encouraged RE to attend medical appointments when they felt “afraid about further trauma” within medical settings. This supported RE to feel “willing to engage with medical services, and steel myself for what I might experience”. RE cited that MW did not receive their own support or resources, nor any information on sibling-carer groups. RE also felt doctors “ignored the protective, supportive and healing factors of our relationship and how MW’s involvement in my treatment could support my recovery”.

ES described how increased ED health literacy helped her to support SS to receive diagnosis and treatment:

After hearing my lecturer talk about EDs, I brought SS in to speak to her. My lecturer (a nutritionist), provided her with a referral to a psychologist and dietitian…it was an important turning point, and I am glad I was able to influence SS’s decision to start treatment. - ES (Discordant for ‘Atypical’ AN)

These experiences emphasise the important roles of discordant twin siblings in supporting their siblings with AN both to receive diagnosis and treatment, in family relationships, and as sibling-carers.

This research expands literature on AN development and epigenetics, by finding that AN in discordant twins was influced by bio-psycho-social factors, including: differing exposure to stressful, traumatic, and stigmatising experiences [ 14 , 54 , 80 , 122 ]; health-related beliefs, diet; autoimmune, gastrointestinal problems; sensory differences; and pursuit of different gendered body ideals. Pre-pubescent and pubertal development were critically important growth periods [ 48 ] where heightened exposure to childhood trauma [ 122 , 123 ], gendered objectification and sexism [ 79 , 124 ], and in-school focus on weight loss and health [ 125 , 126 , 127 ] triggered body-related distress and disordered eating. For RE, longstanding AN became a way of coping with multiple traumatic/adverse experiences, and became traumatic in its own right [ 123 , 128 , 129 ]. In twins with AN, body-related shame (i.e., gender dysphoria [ 130 , 131 , 132 , 133 , 134 , 135 , 136 , 137 ]; bust size [ 138 ]) was connected to pressure, conflict and pursuit of gendered body ideals (i.e., ‘womanly shape’, ‘ballerina physique’ [ 138 , 139 ] and non-binary body ideals [ 131 , 135 , 140 ]). Additional factors that differentiated AN development in discordant twins included: gastrointestinal problems [ 141 , 142 , 143 , 144 , 145 , 146 ], sensory differences [ 147 , 148 , 149 ], health- and eating-related beliefs [ 150 , 151 , 152 , 153 , 154 ], vegetarian/vegan dietary change [ 155 , 156 , 157 , 158 , 159 , 160 ], and greater perceived food/financial insecurity [ 161 , 162 , 163 , 164 , 165 , 166 ]. Unmet needs in treatment (i.e., AN and ARFID co-occurrence Footnote 3 , trauma, gender dysphoria)[ 137 , 167 , 168 , 169 , 170 , 171 , 172 ] and the physical impacts of severe and chronic AN [ 173 , 174 , 175 ] also maintained severe illness, hopelessness, and longstanding AN duration.

Identity is recognised as important to ED development, maintenance, course of illness, and recovery [ 71 , 176 , 177 , 178 , 179 ]; however, identity amongst twins discordant for ED is a gap in the literature. The expectations of twins RE and MW to have identical identities and lives may have been grounded in cisheterosexism, healthism, stereotypes surrounding twins, and misunderstandings about genetics, and AN aetiology [ 151 , 180 , 181 , 182 , 183 , 184 ]. Misperceptions of genetics and identities in identical twins shaped case conceptualisation of discordant AN and negatively influenced treatment expectations, prognosis, and lack of personalised care. Clinicians’ misperception of twin development and milestone disparities resulted in failed recognition of key functions of AN and led to significant unmet needs in treatment (i.e., trauma, gender dysphoria) which contributed to longstanding AN duration. Physical disparity caused by AN discordance also affected twins’ personal identity and sense of the twin relationship (relational identity). In RE and MW’s experience of RE’s longstanding AN, the physical disparity between them became a specific aspect of trauma. The physical differences between RE and MW in appearance, body size, shape, and features (i.e., loss of their genetic resemblance) created an ongoing sense of fear of RE’s health risk, and sense of loss due to the health impacts of AN.

This research advances current knowledge on ED stigma, identity and AN development by exploring the impact of twin tropes. Twins were frequently compared, and asked questions that subsumed their identities in reference to one another ("who's the evil twin?" [ 185 , 186 , 187 ]). Both negative and positive twin tropes influenced AN development, maintenance, and treatment in discordant twins. ‘Healthy’ twin characterisation reinforced health-motivated restrictive eating [ 152 , 153 , 154 , 182 ], whereas ‘evil’ and parasitic’ twin tropes [ 185 , 187 , 188 , 189 , 190 ] reinforced self-starvation as atonement for ‘intrinsic’ immorality. Stigma for mental health problems intersected with and reinforced ‘evil’ twin tropes. AN emaciation and suicide attempt/self-harm scars were used to characterise RE as the ‘evil twin’, consistent with sociocultural stereotypes of marks/otherness denoting moral ‘deviance’ or social/moral transgression [ 191 , 192 , 193 , 194 ]). Twin tropes were also assumed by clinicians to be a factor in twin AN discordance (i.e., AN and ambivalence for recovery representing ego-division and an attempt to control/assume the ‘twin’ identity) [ 186 , 188 , 190 , 193 , 194 , 195 , 196 ].

These two case studies extend current literature on barriers to ED treatment. Twins discordant for AN may face additional barriers to early diagnosis and intervention due to stigma and misunderstandings of twin discordance. Family members’ and clinicians’ recognition of AN in discordant twins was influenced by insufficient ED health literacy and ED stereotypes [ 197 , 198 , 199 , 200 , 201 ], ED diagnostic criteria and treatment cut-offs [ 202 , 203 , 204 , 205 , 206 , 207 , 208 , 209 ], however an additional barrier included misconceptions of genetics and twin discordance. These barriers influenced duration of untreated ED and treatment response [ 210 , 211 , 212 , 213 ] (in the case of SS, 4.5 years untreated ‘atypical’ AN; in the case of RE, 10 years of untreated AN despite early mental health treatment due to medical overshadowing and misattribution). Promoting health and genetic literacy, dismantling ED and twin stereotypes, and increasing treatment access (i.e., removing overreliance on BMI, recognising the significance of weight suppression and weight loss speed; [ 119 , 214 , 215 ]) may promote earlier recognition of ED discordance in twins, and increased illness acceptance.

As illustrated in RE’s case of longstanding AN, in EDs, illness denial and impaired insight (anosognosia), dissociation, and self-disconnection [ 216 , 217 ] may be a mechanism of malnutrition and embodiment disturbance [ 96 , 217 , 218 ], trauma, maladaptive beliefs, and suicidality [ 96 , 219 , 220 ]. In psychiatric and legal contexts, illness denial interrelates with treatment refusal or ‘compliance’ [ 221 , 222 , 223 , 224 ]. As shown in RE’s case, illness treatment refusal should not be assumed to indicate impaired insight, as it can be unintentional or deliberate Footnote 4 [ 225 , 226 , 227 , 228 , 229 , 230 , 231 ]. Family members’ and medical practitioners’ desensitisation to RE’s condition affected RE’s level of desensitisation or sense of urgency to seeking medical care. This finding extends current knowledge on insight and ambivalence in AN and longstanding AN by demonstrating that these experiences are externally influenced and fluctuate with relational dynamics.

Self-processing difficulties may result in individuals with AN perceiving themselves as they would another person or a stranger [ 232 , 233 , 234 , 235 ]—the body is not “self-related”, and therefore, there is no self-directed motivation for protection (i.e., health behaviours). The emotional detachment described by RE may relate to differences in self-processing, such as a lack of activation in the attentional system or insula [ 232 ]. For RE, the comparisons their twin-sibling MW made between their bodies as identical twins (i.e., the physical impacts of AN discordance) may have engaged areas of the brain involved in self-processing, resulting in greater self-compassion and insight [ 232 , 236 ] (i.e., stimulating the insula through compassion [ 237 ]). This has indications for the benefits of referential body image (i.e., discordant twins, avatar therapy) for increasing self-compassion and illness-related insight, particularly in severe and longstanding AN presentations.

Longstanding AN duration was influenced by greater disturbance in embodiment [ 238 ], body schema [ 239 , 240 , 241 , 242 ], multisensory integration [ 240 , 243 , 244 ], self-processing, and interoception [ 234 , 245 , 246 ], with interconnecting relationships between body dysmorphia, gender dysphoria, non-binary body ideals, hegemonic expectations of gender expression, body dissatisfaction, and disordered eating [ 130 , 131 , 135 , 247 ]). These findings highlight the complex, intersecting relationships involved in embodiment and AN.

RE experienced pressure to conceal their ED [ 248 ] due to family members fearing stigma and judgment [ 249 , 250 , 251 ] related to their twin discordance for AN (i.e., blame for having ‘failed’ to care for one twin (RE), and/or as having ‘caused’ the AN discordance [ 252 ]). This resulted in greater family dysfunction [ 251 , 253 ] and lower family involvement in treatment [ 254 ]. Fear of stigma for twin discordance is a previously undescribed aspect of ED stigma, and was a treatment barrier specific to twins discordant for EDs and their family members. RE provided ED health literacy regarding genetic/familial risk, twin discordance, and environmental factors, which supported their parents’ understanding and decreased fear of judgement and stigma. In turn, their parents increased support of RE engaging in medical services when in acute medical crisis. This highlights the need for genetic education and genetic counselling for families affected by ED [ 255 ], particularly families with twins discordant for EDs.

Siblings may be the first family members to recognise their siblings’ disordered eating, as in the case of ES and SS. Siblings may have complex roles in families affected by AN, including acting as a mediator, ‘family counsellor’, ‘protector’, and ‘problem solver’ [ 256 ], however, may be under-involved in treatment decisions, and left without adequate resources [ 249 , 251 , 256 ], akin to the experiences of MW. This research extends knowledge on sibling roles in AN-affected families by finding that discordant twin siblings may experience specific family roles connected to ED discordance. The family’s perceived stigma regarding RE and MW as discordant twins increased pressure on MW to support family members and ‘explain’ their discordance to family members and others. The impact of AN on MW was a defining factor in RE’s motivation for healing and treatment re-engagement, however clinicians’ misconceptions of genetics and the twin relationship resulted in failure to recognise this relationship as protective against AN and suicide, and to involve MW in RE’s treatment.

Iatrogenic harm and weight stigma influenced treatment experiences and engagement. Iatrogenic harm led to cumulative trauma and treatment disengagement, maintaining RE’s longstanding AN [ 73 , 83 , 95 , 96 , 257 , 258 , 259 ], and creating distress and additional burdens on MW as a sibling-carer. EDs have been recognised as shared trauma for family members including siblings [ 260 , 261 ], however, iatrogenic harm has been underrecognised as part of this shared trauma. Research on addressing and rebuilding trust after iatrogenic harm (i.e., restorative just and learning culture practices [ 262 , 263 ]) has been a substantial gap in psychiatric research and clinical practice, including for EDs. MW’s involvement in RE’s inpatient treatment supported medical re-engagement (establishing a sense of safety and helping repair trust with clinical staff). For SS, weight stigma contributed to delayed diagnosis and treatment for ‘atypical’ AN [ 202 , 208 , 209 ]; whereas dismantling weight stigma supported recovery. For RE, weight stigma reinforced desensitisation, undermined acceptance of their AN as a medical emergency, and eroded trust in clinical staff. In both cases, twins without AN (MW and ES) were vital for service navigation and support during AN, including in recognition, treatment, coping with iatrogenic harm, and recovery processes.

These autoethnographic accounts of twin discordance for longstanding AN and ‘atypical’ AN provide insights into the impacts of surviving, living with, and healing from AN, including its impacts on the twin relationship, and the importance of the twin relationship for treatment engagement, healing and recovery. Multiple factors may have contributed to discordance in both of these cases (Tables 1 and 2 , and Figs. 1 , 2 , 3 and 4 ), particularly environmental factors that may have interacted with genetic vulnerability, including higher exposure to traumatic/adverse events, immune and gastrointestinal disturbance, sensory/interoceptive attentiveness/attunement, dietary change, and pursuit of body ideals. These findings of these case studies have both clinical and research implications (Boxes 1 and 2 ).

Data availability

All information and materials for these case studies are contained in this manuscript. There are no additional supporting data or materials.

Although 7 years duration and non-response to previous treatments has been reported to be the most commonly used definition to categorise longstanding AN [ 65 ], differing thresholds of illness duration may be used. Due to differences in how longstanding AN may be defined (i.e., < 7 years duration, > 7 years duration; a criterion of treatment non-response, or no criterion regarding treatment non-response), it may be that SS meets some definitions of longstanding ED (longstanding atypical AN), and does not meet others. This highlights the complexity with concepts, definitions, and prognosis in longstanding ED [ 73 ].

RE uses they/them pronouns. MW, ES, and SS use she/her pronouns.

Diagnostic and Statistical Manual of Mental Disorders-5 trumping system criteria prevents co-occurring diagnosis of both AN and ARFID: Avoidant/Restrictive Food Intake Disorder Criterion C: "The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced".

Unintentional denial involves neurobiologically-based impaired self-awareness, distorted information processing, dissociation, or other unintentional reasons for denying or being unaware of illness states. Deliberate denial and refusal of self-disclosure is intentional and arises from needs that are given higher priority (i.e., avoidance of feared consequences/losses, need for self-determination/autonomy, lack of trust).

Abbreviations

Anorexia nervosa

Avoidant/restrictive food intake disorder

Complex posttraumatic stress disorder

Child and youth mental health service

Electrocardiography

Eating disorder

Eating disorders

Diverse sexual/gender identities (including but not limited to lesbian, gay, bisexual, transgender, gender non-binary and gender diverse, intersex, Two-Spirit, queer/questioning, asexual and aromantic)

Nasogastric feeding tube

Neonatal intensive care unit

Posttraumatic stress disorder

Severe-enduring anorexia nervosa

Severe-enduring eating disorder

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The authors wish to warmly acknowledge Laura Kiely for encouragement and supportive discussions regarding formatting and editing.

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Reflexive positionality statement: The authors of this paper have lived or living experience as twins discordant for longstanding anorexia nervosa and OSFED (‘atypical’ anorexia nervosa), and are also advocates, professionals, and researchers in the fields of EDs, neuroscience, psychology, biology and ecology. These life experiences informed the approach to this paper. Contributions : RE conceptualised this manuscript, researched and wrote all literature contributions, created the figures, and provided projected administration. Narrative autoethnographic inclusions of the case study material were written by the respective authors: RE, MW, ES, and SS, whose personal experiences they reflect. Transcribed quotes from meetings are direct reflections from the respective authors. All authors: RE, MW, ES, and SS contributed to the overall article planning, collective autoethnography, and thematic analysis. All authors contributed minor grammatical editing of narrative autoethnographic inclusions (which did not significantly alter the meaning or content of the original text) and overall revisions.

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Elwyn, R., Williams, M., Smith, E. et al. Two identical twin pairs discordant for longstanding anorexia nervosa and OSFED: lived experience accounts of eating disorder and recovery processes. J Eat Disord 12 , 127 (2024). https://doi.org/10.1186/s40337-024-01078-w

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