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Qualitative research: literature review .

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Exploring the literature review

Literature review model: 6 steps.

Adapted from The Literature Review , Machi & McEvoy (2009, p. 13).

Your Literature Review

Step 2: search, boolean search strategies, search limiters, ★ ebsco & google drive.

1. Select a Topic

"All research begins with curiosity" (Machi & McEvoy, 2009, p. 14)

Selection of a topic, and fully defined research interest and question, is supervised (and approved) by your professor. Tips for crafting your topic include:

Be specific. Take time to define your interest.
Topic Focus. Fully describe and sufficiently narrow the focus for research.
Academic Discipline. Learn more about your area of research & refine the scope.
Avoid Bias. Be aware of bias that you (as a researcher) may have.
Document your research. Use Google Docs to track your research process.
Research apps. Consider using Evernote or Zotero to track your research.

Consider Purpose

What will your topic and research address?

In The Literature Review: A Step-by-Step Guide for Students , Ridley presents that literature reviews serve several purposes (2008, p. 16-17). Included are the following points:

Historical background for the research;
Overview of current field provided by "contemporary debates, issues, and questions;"
Theories and concepts related to your research;
Introduce "relevant terminology" - or academic language - being used it the field;
Connect to existing research - does your work "extend or challenge [this] or address a gap;"
Provide "supporting evidence for a practical problem or issue" that your research addresses.

★ Schedule a research appointment

At this point in your literature review, take time to meet with a librarian. Why? Understanding the subject terminology used in databases can be challenging. Archer Librarians can help you structure a search, preparing you for step two. How? Contact a librarian directly or use the online form to schedule an appointment. Details are provided in the adjacent Schedule an Appointment box.

2. Search the Literature

Collect & Select Data: Preview, select, and organize

AU Library is your go-to resource for this step in your literature review process. The literature search will include books and ebooks, scholarly and practitioner journals, theses and dissertations, and indexes. You may also choose to include web sites, blogs, open access resources, and newspapers. This library guide provides access to resources needed to complete a literature review.

Books & eBooks: Archer Library & OhioLINK

Databases: scholarly & practitioner journals.

Review the Library Databases tab on this library guide, it provides links to recommended databases for Education & Psychology, Business, and General & Social Sciences.

Expand your journal search; a complete listing of available AU Library and OhioLINK databases is available on the Databases A to Z list . Search the database by subject, type, name, or do use the search box for a general title search. The A to Z list also includes open access resources and select internet sites.

Databases: Theses & Dissertations

Review the Library Databases tab on this guide, it includes Theses & Dissertation resources. AU library also has AU student authored theses and dissertations available in print, search the library catalog for these titles.

Did you know? If you are looking for particular chapters within a dissertation that is not fully available online, it is possible to submit an ILL article request . Do this instead of requesting the entire dissertation.

Newspapers: Databases & Internet

Consider current literature in your academic field. AU Library's database collection includes The Chronicle of Higher Education and The Wall Street Journal . The Internet Resources tab in this guide provides links to newspapers and online journals such as Inside Higher Ed , COABE Journal , and Education Week .

Search Strategies & Boolean Operators

There are three basic boolean operators: AND, OR, and NOT.

Used with your search terms, boolean operators will either expand or limit results. What purpose do they serve? They help to define the relationship between your search terms. For example, using the operator AND will combine the terms expanding the search. When searching some databases, and Google, the operator AND may be implied.

Overview of boolean terms

About the example: Boolean searches were conducted on November 4, 2019; result numbers may vary at a later date. No additional database limiters were set to further narrow search returns.

Database Search Limiters

Database strategies for targeted search results.

Most databases include limiters, or additional parameters, you may use to strategically focus search results. EBSCO databases, such as Education Research Complete & Academic Search Complete provide options to:

Limit results to full text;
Limit results to scholarly journals, and reference available;
Select results source type to journals, magazines, conference papers, reviews, and newspapers
Publication date

Keep in mind that these tools are defined as limiters for a reason; adding them to a search will limit the number of results returned. This can be a double-edged sword. How?

If limiting results to full-text only, you may miss an important piece of research that could change the direction of your research. Interlibrary loan is available to students, free of charge. Request articles that are not available in full-text; they will be sent to you via email.
If narrowing publication date, you may eliminate significant historical - or recent - research conducted on your topic.
Limiting resource type to a specific type of material may cause bias in the research results.

Use limiters with care. When starting a search, consider opting out of limiters until the initial literature screening is complete. The second or third time through your research may be the ideal time to focus on specific time periods or material (scholarly vs newspaper).

★ Truncating Search Terms

Expanding your search term at the root.

Truncating is often referred to as 'wildcard' searching. Databases may have their own specific wildcard elements however, the most commonly used are the asterisk (*) or question mark (?). When used within your search. they will expand returned results.

Asterisk (*) Wildcard

Using the asterisk wildcard will return varied spellings of the truncated word. In the following example, the search term education was truncated after the letter "t."

Explore these database help pages for additional information on crafting search terms.

EBSCO Connect: Searching with Wildcards and Truncation Symbols
EBSCO Connect: Searching with Boolean Operators
EBSCO Connect: EBSCOhost Search Tips
EBSCO Connect: Basic Searching with EBSCO
ProQuest Help: Search Tips
ERIC: How does ERIC search work?

★ EBSCO Databases & Google Drive

Tips for saving research directly to Google drive.

Researching in an EBSCO database?

It is possible to save articles (PDF and HTML) and abstracts in EBSCOhost databases directly to Google drive. Select the Google Drive icon, authenticate using a Google account, and an EBSCO folder will be created in your account. This is a great option for managing your research. If documenting your research in a Google Doc, consider linking the information to actual articles saved in drive.

EBSCO Databases & Google Drive

EBSCOHost Databases & Google Drive: Managing your Research

This video features an overview of how to use Google Drive with EBSCO databases to help manage your research. It presents information for connecting an active Google account to EBSCO and steps needed to provide permission for EBSCO to manage a folder in Drive.

About the Video: Closed captioning is available, select CC from the video menu. If you need to review a specific area on the video, view on YouTube and expand the video description for access to topic time stamps. A video transcript is provided below.

EBSCOhost Databases & Google Scholar

Defining Literature Review

What is a literature review.

A definition from the Online Dictionary for Library and Information Sciences .

A literature review is "a comprehensive survey of the works published in a particular field of study or line of research, usually over a specific period of time, in the form of an in-depth, critical bibliographic essay or annotated list in which attention is drawn to the most significant works" (Reitz, 2014).

A systemic review is "a literature review focused on a specific research question, which uses explicit methods to minimize bias in the identification, appraisal, selection, and synthesis of all the high-quality evidence pertinent to the question" (Reitz, 2014).

About this page

EBSCO Connect [Discovery and Search]. (2022). Searching with boolean operators. Retrieved May, 3, 2022 from https://connect.ebsco.com/s/?language=en_US

EBSCO Connect [Discover and Search]. (2022). Searching with wildcards and truncation symbols. Retrieved May 3, 2022; https://connect.ebsco.com/s/?language=en_US

Machi, L.A. & McEvoy, B.T. (2009). The literature review . Thousand Oaks, CA: Corwin Press:

Reitz, J.M. (2014). Online dictionary for library and information science. ABC-CLIO, Libraries Unlimited . Retrieved from https://www.abc-clio.com/ODLIS/odlis_A.aspx

Ridley, D. (2008). The literature review: A step-by-step guide for students . Thousand Oaks, CA: Sage Publications, Inc.

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Chapter 9. Reviewing the Literature

What is a “literature review”.

No researcher ever comes up with a research question that is wholly novel. Someone, somewhere, has asked the same thing. Academic research is part of a larger community of researchers, and it is your responsibility, as a member of this community, to acknowledge others who have asked similar questions and to put your particular research into this greater context. It is not simply a convention or custom to begin your study with a review of previous literature (the “ lit review ”) but an important responsibility you owe the scholarly community.

Too often, new researchers pursue a topic to study and then write something like, “No one has ever studied this before” or “This area is underresearched.” It may be that no one has studied this particular group or setting, but it is highly unlikely no one has studied the foundational phenomenon of interest. And that comment about an area being underresearched? Be careful. The statement may simply signal to others that you haven’t done your homework. Rubin ( 2021 ) refers to this as “free soloing,” and it is not appreciated in academic work:

The truth of the matter is, academics don’t really like when people free solo. It’s really bad form to omit talking about the other people who are doing or have done research in your area. Partly, I mean we need to cite their work, but I also mean we need to respond to it—agree or disagree, clarify for extend. It’s also really bad form to talk about your research in a way that does not make it understandable to other academics.…You have to explain to your readers what your story is really about in terms they care about . This means using certain terminology, referencing debates in the literature, and citing relevant works—that is, in connecting your work to something else. ( 51–52 )

A literature review is a comprehensive summary of previous research on a topic. It includes both articles and books—and in some cases reports—relevant to a particular area of research. Ideally, one’s research question follows from the reading of what has already been produced. For example, you are interested in studying sports injuries related to female gymnasts. You read everything you can find on sports injuries related to female gymnasts, and you begin to get a sense of what questions remain open. You find that there is a lot of research on how coaches manage sports injuries and much about cultures of silence around treating injuries, but you don’t know what the gymnasts themselves are thinking about these issues. You look specifically for studies about this and find several, which then pushes you to narrow the question further. Your literature review then provides the road map of how you came to your very specific question, and it puts your study in the context of studies of sports injuries. What you eventually find can “speak to” all the related questions as well as your particular one.

In practice, the process is often a bit messier. Many researchers, and not simply those starting out, begin with a particular question and have a clear idea of who they want to study and where they want to conduct their study but don’t really know much about other studies at all. Although backward, we need to recognize this is pretty common. Telling students to “find literature” after the fact can seem like a purposeless task or just another hurdle for completing a thesis or dissertation. It is not! Even if you were not motivated by the literature in the first place, acknowledging similar studies and connecting your own research to those studies are important parts of building knowledge. Acknowledgment of past research is a responsibility you owe the discipline to which you belong.

Literature reviews can also signal theoretical approaches and particular concepts that you will incorporate into your own study. For example, let us say you are doing a study of how people find their first jobs after college, and you want to use the concept of social capital . There are competing definitions of social capital out there (e.g., Bourdieu vs. Burt vs. Putnam). Bourdieu’s notion is of one form of capital, or durable asset, of a “network of more or less institutionalized relationships of mutual acquaintance or recognition” ( 1984:248 ). Burt emphasizes the “brokerage opportunities” in a social network as social capital ( 1997:355 ). Putnam’s social capital is all about “facilitating coordination and cooperation for mutual benefit” ( 2001:67 ). Your literature review can adjudicate among these three approaches, or it can simply refer to the one that is animating your own research. If you include Bourdieu in your literature review, readers will know “what kind” of social capital you are talking about as well as what kind of social scientist you yourself are. They will likely understand that you are interested more in how some people are advantaged by their social capital relative to others rather than being interested in the mechanics of how social networks operate.

The literature review thus does two important things for you: firstly, it allows you to acknowledge previous research in your area of interest, thereby situating you within a discipline or body of scholars, and, secondly, it demonstrates that you know what you are talking about. If you present the findings of your research study without including a literature review, it can be like singing into the wind. It sounds nice, but no one really hears it, or if they do catch snippets, they don’t know where it is coming from.

Examples of Literature Reviews

To help you get a grasp of what a good literature review looks like and how it can advance your study, let’s take a look at a few examples.

Reader-Friendly Example: The Power of Peers

The first is by Janice McCabe ( 2016 ) and is from an article on peer networks in the journal Contexts . Contexts presents articles in a relatively reader-friendly format, with the goal of reaching a large audience for interesting sociological research. Read this example carefully and note how easily McCabe is able to convey the relevance of her own work by situating it in the context of previous studies:

Scholars who study education have long acknowledged the importance of peers for students’ well-being and academic achievement. For example, in 1961, James Coleman argued that peer culture within high schools shapes students’ social and academic aspirations and successes. More recently, Judith Rich Harris has drawn on research in a range of areas—from sociological studies of preschool children to primatologists’ studies of chimpanzees and criminologists’ studies of neighborhoods—to argue that peers matter much more than parents in how children “turn out.” Researchers have explored students’ social lives in rich detail, as in Murray Milner’s book about high school students, Freaks, Geeks, and Cool Kids , and Elizabeth Armstrong and Laura Hamilton’s look at college students, Paying for the Party . These works consistently show that peers play a very important role in most students’ lives. They tend, however, to prioritize social over academic influence and to use a fuzzy conception of peers rather than focusing directly on friends—the relationships that should matter most for student success. Social scientists have also studied the power of peers through network analysis, which is based on uncovering the web of connections between people. Network analysis involves visually mapping networks and mathematically comparing their structures (such as the density of ties) and the positions of individuals within them (such as how central a given person is within the network). As Nicholas Christakis and James Fowler point out in their book Connected , network structure influences a range of outcomes, including health, happiness, wealth, weight, and emotions. Given that sociologists have long considered network explanations for social phenomena, it’s surprising that we know little about how college students’ friends impact their experiences. In line with this network tradition, I focus on the structure of friendship networks, constructing network maps so that the differences we see across participants are due to the underlying structure, including each participant’s centrality in their friendship group and the density of ties among their friends. ( 23 )

What did you notice? In her very second sentence, McCabe uses “for example” to introduce a study by Coleman, thereby indicating that she is not going to tell you every single study in this area but is going to tell you that (1) there is a lot of research in this area, (2) it has been going on since at least 1961, and (3) it is still relevant (i.e., recent studies are still being done now). She ends her first paragraph by summarizing the body of literature in this area (after giving you a few examples) and then telling you what may have been (so far) left out of this research. In the second paragraph, she shifts to a separate interesting focus that is related to the first but is also quite distinct. Lit reviews very often include two (or three) distinct strands of literature, the combination of which nicely backgrounds this particular study . In the case of our female gymnast study (above), those two strands might be (1) cultures of silence around sports injuries and (2) the importance of coaches. McCabe concludes her short and sweet literature review with one sentence explaining how she is drawing from both strands of the literature she has succinctly presented for her particular study. This example should show you that literature reviews can be readable, helpful, and powerful additions to your final presentation.

Authoritative Academic Journal Example: Working Class Students’ College Expectations

The second example is more typical of academic journal writing. It is an article published in the British Journal of Sociology of Education by Wolfgang Lehmann ( 2009 ):

Although this increase in post-secondary enrolment and the push for university is evident across gender, race, ethnicity, and social class categories, access to university in Canada continues to be significantly constrained for those from lower socio-economic backgrounds (Finnie, Lascelles, and Sweetman 2005). Rising tuition fees coupled with an overestimation of the cost and an underestimation of the benefits of higher education has put university out of reach for many young people from low-income families (Usher 2005). Financial constraints aside, empirical studies in Canada have shown that the most important predictor of university access is parental educational attainment. Having at least one parent with a university degree significantly increases the likelihood of a young person to attend academic-track courses in high school, have high educational and career aspirations, and ultimately attend university (Andres et al. 1999, 2000; Lehmann 2007a). Drawing on Bourdieu’s various writing on habitus and class-based dispositions (see, for example, Bourdieu 1977, 1990), Hodkinson and Sparkes (1997) explain career decisions as neither determined nor completely rational. Instead, they are based on personal experiences (e.g., through employment or other exposure to occupations) and advice from others. Furthermore, they argue that we have to understand these decisions as pragmatic, rather than rational. They are pragmatic in that they are based on incomplete and filtered information, because of the social context in which the information is obtained and processed. New experiences and information can, however, also be allowed into one’s world, where they gradually or radically transform habitus, which in turn creates the possibility for the formation of new and different dispositions. Encountering a supportive teacher in elementary or secondary school, having ambitious friends, or chance encounters can spark such transformations. Transformations can be confirming or contradictory, they can be evolutionary or dislocating. Working-class students who enter university most certainly encounter such potentially transformative situations. Granfield (1991) has shown how initially dislocating feelings of inadequacy and inferiority of working-class students at an elite US law school were eventually replaced by an evolutionary transformation, in which the students came to dress, speak and act more like their middle-class and upper-class peers. In contrast, Lehmann (2007b) showed how persistent habitus dislocation led working-class university students to drop out of university. Foskett and Hemsley-Brown (1999) argue that young people’s perceptions of careers are a complex mix of their own experiences, images conveyed through adults, and derived images conveyed by the media. Media images of careers, perhaps, are even more important for working-class youth with high ambitions as they offer (generally distorted) windows into a world of professional employment to which they have few other sources of access. It has also been argued that working-class youth who do continue to university still face unique, class-specific challenges, evident in higher levels of uncertainty (Baxter and Britton 2001; Lehmann 2004, 2007a; Quinn 2004), their higher education choices (Ball et al. 2002; Brooks 2003; Reay et al. 2001) and fears of inadequacy because of their cultural outsider status (Aries and Seider 2005; Granfield 1991). Although the number of working-class university students in Canada has slowly increased, that of middle-class students at university has risen far more steeply (Knighton and Mizra 2002). These different enrolment trajectories have actually widened the participation gap, which in tum explains our continued concerns with the potential outsider status Indeed, in a study comparing first-generation working-class and traditional students who left university without graduating, Lehmann (2007b) found that first-generation working-class students were more likely to leave university very early in some cases within the first two months of enrollment. They were also more likely to leave university despite solid academic performance. Not “fitting in,” not “feeling university,” and not being able to “relate to these people” were key reasons for eventually withdrawing from university. From the preceding review of the literature, a number of key research questions arise: How do working-class university students frame their decision to attend university? How do they defy the considerable odds documented in the literature to attend university? What are the sources of information and various images that create dispositions to study at university? What role does their social-class background- or habitus play in their transition dispositions and how does this translate into expectations for university? ( 139 )

What did you notice here? How is this different from (and similar to) the first example? Note that rather than provide you with one or two illustrative examples of similar types of research, Lehmann provides abundant source citations throughout. He includes theory and concepts too. Like McCabe, Lehmann is weaving through multiple literature strands: the class gap in higher education participation in Canada, class-based dispositions, and obstacles facing working-class college students. Note how he concludes the literature review by placing his research questions in context.

Find other articles of interest and read their literature reviews carefully. I’ve included two more for you at the end of this chapter . As you learned how to diagram a sentence in elementary school (hopefully!), try diagramming the literature reviews. What are the “different strands” of research being discussed? How does the author connect these strands to their own research questions? Where is theory in the lit review, and how is it incorporated (e.g., Is it a separate strand of its own or is it inextricably linked with previous research in this area)?

One model of how to structure your literature review can be found in table 9.1. More tips, hints, and practices will be discussed later in the chapter.

Table 9.1. Model of Literature Review, Adopted from Calarco (2020:166)

Embracing Theory

A good research study will, in some form or another, use theory. Depending on your particular study (and possibly the preferences of the members of your committee), theory may be built into your literature review. Or it may form its own section in your research proposal/design (e.g., “literature review” followed by “theoretical framework”). In my own experience, I see a lot of graduate students grappling with the requirement to “include theory” in their research proposals. Things get a little squiggly here because there are different ways of incorporating theory into a study (Are you testing a theory? Are you generating a theory?), and based on these differences, your literature review proper may include works that describe, explain, and otherwise set forth theories, concepts, or frameworks you are interested in, or it may not do this at all. Sometimes a literature review sets forth what we know about a particular group or culture totally independent of what kinds of theoretical framework or particular concepts you want to explore. Indeed, the big point of your study might be to bring together a body of work with a theory that has never been applied to it previously. All this is to say that there is no one correct way to approach the use of theory and the writing about theory in your research proposal.

Students are often scared of embracing theory because they do not exactly understand what it is. Sometimes, it seems like an arbitrary requirement. You’re interested in a topic; maybe you’ve even done some research in the area and you have findings you want to report. And then a committee member reads over what you have and asks, “So what?” This question is a good clue that you are missing theory, the part that connects what you have done to what other researchers have done and are doing. You might stumble upon this rather accidentally and not know you are embracing theory, as in a case where you seek to replicate a prior study under new circumstances and end up finding that a particular correlation between behaviors only happens when mediated by something else. There’s theory in there, if you can pull it out and articulate it. Or it might be that you are motivated to do more research on racial microaggressions because you want to document their frequency in a particular setting, taking for granted the kind of critical race theoretical framework that has done the hard work of defining and conceptualizing “microaggressions” in the first place. In that case, your literature review could be a review of Critical Race Theory, specifically related to this one important concept. That’s the way to bring your study into a broader conversation while also acknowledging (and honoring) the hard work that has preceded you.

Rubin ( 2021 ) classifies ways of incorporating theory into case study research into four categories, each of which might be discussed somewhat differently in a literature review or theoretical framework section. The first, the least theoretical, is where you set out to study a “configurative idiographic case” ( 70 ) This is where you set out to describe a particular case, leaving yourself pretty much open to whatever you find. You are not expecting anything based on previous literature. This is actually pretty weak as far as research design goes, but it is probably the default for novice researchers. Your committee members should probably help you situate this in previous literature in some way or another. If they cannot, and it really does appear you are looking at something fairly new that no one else has bothered to research before, and you really are completely open to discovery, you might try using a Grounded Theory approach, which is a methodological approach that foregrounds the generation of theory. In that case, your “theory” section can be a discussion of “Grounded Theory” methodology (confusing, yes, but if you take some time to ponder, you will see how this works). You will still need a literature review, though. Ideally one that describes other studies that have ever looked at anything remotely like what you are looking at—parallel cases that have been researched.

The second approach is the “disciplined configurative case,” in which theory is applied to explain a particular case or topic. You are not trying to test the theory but rather assuming the theory is correct, as in the case of exploring microaggressions in a particular setting. In this case, you really do need to have a separate theory section in addition to the literature review, one in which you clearly define the theoretical framework, including any of its important concepts. You can use this section to discuss how other researchers have used the concepts and note any discrepancies in definitions or operationalization of those concepts. This way you will be sure to design your study so that it speaks to and with other researchers. If everyone who is writing about microaggressions has a different definition of them, it is hard for others to compare findings or make any judgments about their prevalence (or any number of other important characteristics). Your literature review section may then stand alone and describe previous research in the particular area or setting, irrespective of the kinds of theory underlying those studies.

The third approach is “heuristic,” one in which you seek to identify new variables, hypotheses, mechanisms, or paths not yet explained by a theory or theoretical framework. In a way, you are generating new theory, but it is probably more accurate to say that you are extending or deepening preexisting theory. In this case, having a single literature review that is focused on the theory and the ways the theory has been applied and understood (with all its various mechanisms and pathways) is probably your best option. The focus of the literature reviewed is less on the case and more on the theory you are seeking to extend.

The final approach is “theory testing,” which is much rarer in qualitative studies than in quantitative, where this is the default approach. Theory-testing cases are those where a particular case is used to see if an existing theory is accurate or accurate under particular circumstances. As with the heuristic approach, your literature review will probably draw heavily on previous uses of the theory, but you may end up having a special section specifically about cases very close to your own . In other words, the more your study approaches theory testing, the more likely there is to be a set of similar studies to draw on or even one important key study that you are setting your own study up in parallel to in order to find out if the theory generated there operates here.

If we wanted to get very technical, it might be useful to distinguish theoretical frameworks properly from conceptual frameworks. The latter are a bit looser and, given the nature of qualitative research, often fit exploratory studies. Theoretical frameworks rely on specific theories and are essential for theory-testing studies. Conceptual frameworks can pull in specific concepts or ideas that may or may not be linked to particular theories. Think about it this way: A theory is a story of how the world works. Concepts don’t presume to explain the whole world but instead are ways to approach phenomena to help make sense of them. Microaggressions are concepts that are linked to Critical Race Theory. One could contextualize one’s study within Critical Race Theory and then draw various concepts, such as that of microaggressions from the overall theoretical framework. Or one could bracket out the master theory or framework and employ the concept of microaggression more opportunistically as a phenomenon of interest. If you are unsure of what theory you are using, you might want to frame a more practical conceptual framework in your review of the literature.

Helpful Tips

How to maintain good notes for what your read.

Over the years, I have developed various ways of organizing notes on what I read. At first, I used a single sheet of full-size paper with a preprinted list of questions and points clearly addressed on the front side, leaving the second side for more reflective comments and free-form musings about what I read, why it mattered, and how it might be useful for my research. Later, I developed a system in which I use a single 4″ × 6″ note card for each book I read. I try only to use the front side (and write very small), leaving the back for comments that are about not just this reading but things to do or examine or consider based on the reading. These notes often mean nothing to anyone else picking up the card, but they make sense to me. I encourage you to find an organizing system that works for you. Then when you set out to compose a literature review, instead of staring at five to ten books or a dozen articles, you will have ten neatly printed pages or notecards or files that have distilled what is important to know about your reading.

It is also a good idea to store this data digitally, perhaps through a reference manager. I use RefWorks, but I also recommend EndNote or any other system that allows you to search institutional databases. Your campus library will probably provide access to one of these or another system. Most systems will allow you to export references from another manager if and when you decide to move to another system. Reference managers allow you to sort through all your literature by descriptor, author, year, and so on. Even so, I personally like to have the ability to manually sort through my index cards, recategorizing things I have read as I go. I use RefWorks to keep a record of what I have read, with proper citations, so I can create bibliographies more easily, and I do add in a few “notes” there, but the bulk of my notes are kept in longhand.

What kinds of information should you include from your reading? Here are some bulleted suggestions from Calarco ( 2020:113–114 ), with my own emendations:

Citation . If you are using a reference manager, you can import the citation and then, when you are ready to create a bibliography, you can use a provided menu of citation styles, which saves a lot of time. If you’ve originally formatted in Chicago Style but the journal you are writing for wants APA style, you can change your entire bibliography in less than a minute. When using a notecard for a book, I include author, title, date as well as the library call number (since most of what I read I pull from the library). This is something RefWorks is not able to do, and it helps when I categorize.

I begin each notecard with an “intro” section, where I record the aims, goals, and general point of the book/article as explained in the introductory sections (which might be the preface, the acknowledgments, or the first two chapters). I then draw a bold line underneath this part of the notecard. Everything after that should be chapter specific. Included in this intro section are things such as the following, recommended by Calarco ( 2020 ):

Key background . “Two to three short bullet points identifying the theory/prior research on which the authors are building and defining key terms.”
Data/methods . “One or two short bullet points with information about the source of the data and the method of analysis, with a note if this is a novel or particularly effective example of that method.” I use [M] to signal methodology on my notecard, which might read, “[M] Int[erview]s (n-35), B[lack]/W[hite] voters” (I need shorthand to fit on my notecard!).
Research question . “Stated as briefly as possible.” I always provide page numbers so I can go back and see exactly how this was stated (sometimes, in qualitative research, there are multiple research questions, and they cannot be stated simply).
Argument/contributions . “Two to three short bullet points briefly describing the authors’ answer to the central research question and its implication for research, theory, and practice.” I use [ARG] for argument to signify the argument, and I make sure this is prominently visible on my notecard. I also provide page numbers here.

For me, all of this fits in the “intro” section, which, if this is a theoretically rich, methodologically sound book, might take up a third or even half of the front page of my notecard. Beneath the bold underline, I report specific findings or particulars of the book as they emerge chapter by chapter. Calarco’s ( 2020 ) next step is the following:

Key findings . “Three to four short bullet points identifying key patterns in the data that support the authors’ argument.”

All that remains is writing down thoughts that occur upon finishing the article/book. I use the back of the notecard for these kinds of notes. Often, they reach out to other things I have read (e.g., “Robinson reminds me of Crusoe here in that both are looking at the effects of social isolation, but I think Robinson makes a stronger argument”). Calarco ( 2020 ) concludes similarly with the following:

Unanswered questions . “Two to three short bullet points that identify key limitations of the research and/or questions the research did not answer that could be answered in future research.”

As I mentioned, when I first began taking notes like this, I preprinted pages with prompts for “research question,” “argument,” and so on. This was a great way to remind myself to look for these things in particular. You can do the same, adding whatever preprinted sections make sense to you, given what you are studying and the important aspects of your discipline. The other nice thing about the preprinted forms is that it keeps your writing to a minimum—you cannot write more than the allotted space, even if you might want to, preventing your notes from spiraling out of control. This can be helpful when we are new to a subject and everything seems worth recording!

After years of discipline, I have finally settled on my notecard approach. I have thousands of notecards, organized in several index card filing boxes stacked in my office. On the top right of each card is a note of the month/day I finished reading the item. I can remind myself what I read in the summer of 2010 if the need or desire ever arose to do so…those invaluable notecards are like a memento of what my brain has been up to!

Where to Start Looking for Literature

Your university library should provide access to one of several searchable databases for academic books and articles. My own preference is JSTOR, a service of ITHAKA, a not-for-profit organization that works to advance and preserve knowledge and to improve teaching and learning through the use of digital technologies. JSTOR allows you to search by several keywords and to narrow your search by type of material (articles or books). For many disciplines, the “literature” of the literature review is expected to be peer-reviewed “articles,” but some disciplines will also value books and book chapters. JSTOR is particularly useful for article searching. You can submit several keywords and see what is returned, and you can also narrow your search by a particular journal or discipline. If your discipline has one or two key journals (e.g., the American Journal of Sociology and the American Sociological Review are key for sociology), you might want to go directly to those journals’ websites and search for your topic area. There is an art to when to cast your net widely and when to refine your search, and you may have to tack back and forth to ensure that you are getting all that is relevant but not getting bogged down in all studies that might have some marginal relevance.

Some articles will carry more weight than others, and you can use applications like Google Scholar to see which articles have made and are continuing to make larger impacts on your discipline. Find these articles and read them carefully; use their literature review and the sources cited in those articles to make sure you are capturing what is relevant. This is actually a really good way of finding relevant books—only the most impactful will make it into the citations of journals. Over time, you will notice that a handful of articles (or books) are cited so often that when you see, say, Armstrong and Hamilton ( 2015 ), you know exactly what book this is without looking at the full cite. This is when you know you are in the conversation.

You might also approach a professor whose work is broadly in the area of your interest and ask them to recommend one or two “important” foundational articles or books. You can then use the references cited in those recommendations to build up your literature. Just be careful: some older professors’ knowledge of the literature (and I reluctantly add myself here) may be a bit outdated! It is best that the article or book whose references and sources you use to build your body of literature be relatively current.

Keep a List of Your Keywords

When using searchable databases, it is a good idea to keep a list of all the keywords you use as you go along so that (1) you do not needlessly duplicate your efforts and (2) you can more easily adjust your search as you get a better sense of what you are looking for. I suggest you keep a separate file or even a small notebook for this and you date your search efforts.

Here’s an example:

Table 9.2. Keep a List of Your Keywords

Think Laterally

How to find the various strands of literature to combine? Don’t get stuck on finding the exact same research topic you think you are interested in. In the female gymnast example, I recommended that my student consider looking for studies of ballerinas, who also suffer sports injuries and around whom there is a similar culture of silence. It turned out that there was in fact research about my student’s particular questions, just not about the subjects she was interested in. You might do something similar. Don’t get stuck looking for too direct literature but think about the broader phenomenon of interest or analogous cases.

Read Outside the Canon

Some scholars’ work gets cited by everyone all the time. To some extent, this is a very good thing, as it helps establish the discipline. For example, there are a lot of “Bourdieu scholars” out there (myself included) who draw ideas, concepts, and quoted passages from Bourdieu. This makes us recognizable to one another and is a way of sharing a common language (e.g., where “cultural capital” has a particular meaning to those versed in Bourdieusian theory). There are empirical studies that get cited over and over again because they are excellent studies but also because there is an “echo chamber effect” going on, where knowing to cite this study marks you as part of the club, in the know, and so on. But here’s the problem with this: there are hundreds if not thousands of excellent studies out there that fail to get appreciated because they are crowded out by the canon. Sometimes this happens because they are published in “lower-ranked” journals and are never read by a lot of scholars who don’t have time to read anything other than the “big three” in their field. Other times this happens because the author falls outside of the dominant social networks in the field and thus is unmentored and fails to get noticed by those who publish a lot in those highly ranked and visible spaces. Scholars who fall outside the dominant social networks and who publish outside of the top-ranked journals are in no way less insightful than their peers, and their studies may be just as rigorous and relevant to your work, so it is important for you to take some time to read outside the canon. Due to how a person’s race, gender, and class operate in the academy, there is also a matter of social justice and ethical responsibility involved here: “When you focus on the most-cited research, you’re more likely to miss relevant research by women and especially women of color, whose research tends to be under-cited in most fields. You’re also more likely to miss new research, research by junior scholars, and research in other disciplines that could inform your work. Essentially, it is important to read and cite responsibly, which means checking that you’re not just reading and citing the same white men and the same old studies that everyone has cited before you” ( Calarco 2020:112 ).

Consider Multiple Uses for Literature

Throughout this chapter, I’ve referred to the literature of interest in a rather abstract way, as what is relevant to your study. But there are many different ways previous research can be relevant to your study. The most basic use of the literature is the “findings”—for example, “So-and-so found that Canadian working-class students were concerned about ‘fitting in’ to the culture of college, and I am going to look at a similar question here in the US.” But the literature may be of interest not for its findings but theoretically—for example, employing concepts that you want to employ in your own study. Bourdieu’s definition of social capital may have emerged in a study of French professors, but it can still be relevant in a study of, say, how parents make choices about what preschools to send their kids to (also a good example of lateral thinking!).

If you are engaged in some novel methodological form of data collection or analysis, you might look for previous literature that has attempted that. I would not recommend this for undergraduate research projects, but for graduate students who are considering “breaking the mold,” find out if anyone has been there before you. Even if their study has absolutely nothing else in common with yours, it is important to acknowledge that previous work.

Describing Gaps in the Literature

First, be careful! Although it is common to explain how your research adds to, builds upon, and fills in gaps in the previous research (see all four literature review examples in this chapter for this), there is a fine line between describing the gaps and misrepresenting previous literature by failing to conduct a thorough review of the literature. A little humility can make a big difference in your presentation. Instead of “This is the first study that has looked at how firefighters juggle childcare during forest fire season,” say, “I use the previous literature on how working parents juggling childcare and the previous ethnographic studies of firefighters to explore how firefighters juggle childcare during forest fire season.” You can even add, “To my knowledge, no one has conducted an ethnographic study in this specific area, although what we have learned from X about childcare and from Y about firefighters would lead us to expect Z here.” Read more literature review sections to see how others have described the “gaps” they are filling.

Use Concept Mapping

Concept mapping is a helpful tool for getting your thoughts in order and is particularly helpful when thinking about the “literature” foundational to your particular study. Concept maps are also known as mind maps, which is a delightful way to think about them. Your brain is probably abuzz with competing ideas in the early stages of your research design. Write/draw them on paper, and then try to categorize and move the pieces around into “clusters” that make sense to you. Going back to the gymnasts example, my student might have begun by jotting down random words of interest: gymnasts * sports * coaches * female gymnasts * stress * injury * don’t complain * women in sports * bad coaching * anxiety/stress * careers in sports * pain. She could then have begun clustering these into relational categories (bad coaching, don’t complain culture) and simple “event” categories (injury, stress). This might have led her to think about reviewing literature in these two separate aspects and then literature that put them together. There is no correct way to draw a concept map, as they are wonderfully specific to your mind. There are many examples you can find online.

Ask Yourself, “How Is This Sociology (or Political Science or Public Policy, Etc.)?”

Rubin ( 2021:82 ) offers this suggestion instead of asking yourself the “So what?” question to get you thinking about what bridges there are between your study and the body of research in your particular discipline. This is particularly helpful for thinking about theory. Rubin further suggests that if you are really stumped, ask yourself, “What is the really big question that all [fill in your discipline here] care about?” For sociology, it might be “inequality,” which would then help you think about theories of inequality that might be helpful in framing your study on whatever it is you are studying—OnlyFans? Childcare during COVID? Aging in America? I can think of some interesting ways to frame questions about inequality for any of those topics. You can further narrow it by focusing on particular aspects of inequality (Gender oppression? Racial exclusion? Heteronormativity?). If your discipline is public policy, the big questions there might be, How does policy get enacted, and what makes a policy effective? You can then take whatever your particular policy interest is—tax reform, student debt relief, cap-and-trade regulations—and apply those big questions. Doing so would give you a handle on what is otherwise an intolerably vague subject (e.g., What about student debt relief?).

Sometimes finding you are in new territory means you’ve hit the jackpot, and sometimes it means you’ve traveled out of bounds for your discipline. The jackpot scenario is wonderful. You are doing truly innovative research that is combining multiple literatures or is addressing a new or under-examined phenomenon of interest, and your research has the potential to be groundbreaking. Congrats! But that’s really hard to do, and it might be more likely that you’ve traveled out of bounds, by which I mean, you are no longer in your discipline . It might be that no one has written about this thing—at least within your field— because no one in your field actually cares about this topic . ( Rubin 2021:83 ; emphases added)

Don’t Treat This as a Chore

Don’t treat the literature review as a chore that has to be completed, but see it for what it really is—you are building connections to other researchers out there. You want to represent your discipline or area of study fairly and adequately. Demonstrate humility and your knowledge of previous research. Be part of the conversation.

Supplement: Two More Literature Review Examples

Elites by harvey ( 2011 ).

In the last two decades, there has been a small but growing literature on elites. In part, this has been a result of the resurgence of ethnographic research such as interviews, focus groups, case studies, and participant observation but also because scholars have become increasingly interested in understanding the perspectives and behaviors of leaders in business, politics, and society as a whole. Yet until recently, our understanding of some of the methodological challenges of researching elites has lagged behind our rush to interview them.

There is no clear-cut definition of the term elite, and given its broad understanding across the social sciences, scholars have tended to adopt different approaches. Zuckerman (1972) uses the term ultraelites to describe individuals who hold a significant amount of power within a group that is already considered elite. She argues, for example, that US senators constitute part of the country’s political elite but that among them are the ultraelites: a “subset of particularly powerful or prestigious influentials” (160). She suggests that there is a hierarchy of status within elite groups. McDowell (1998) analyses a broader group of “professional elites” who are employees working at different levels for merchant and investment banks in London. She classifies this group as elite because they are “highly skilled, professionally competent, and class-specific” (2135). Parry (1998:2148) uses the term hybrid elites in the context of the international trade of genetic material because she argues that critical knowledge exists not in traditional institutions “but rather as increasingly informal, hybridised, spatially fragmented, and hence largely ‘invisible,’ networks of elite actors.” Given the undertheorization of the term elite, Smith (2006) recognizes why scholars have shaped their definitions to match their respondents . However, she is rightly critical of the underlying assumption that those who hold professional positions necessarily exert as much influence as initially perceived. Indeed, job titles can entirely misrepresent the role of workers and therefore are by no means an indicator of elite status (Harvey 2010).

Many scholars have used the term elite in a relational sense, defining them either in terms of their social position compared to the researcher or compared to the average person in society (Stephens 2007). The problem with this definition is there is no guarantee that an elite subject will necessarily translate this power and authority in an interview setting. Indeed, Smith (2006) found that on the few occasions she experienced respondents wanting to exert their authority over her, it was not from elites but from relatively less senior workers. Furthermore, although business and political elites often receive extensive media training, they are often scrutinized by television and radio journalists and therefore can also feel threatened in an interview, particularly in contexts that are less straightforward to prepare for such as academic interviews. On several occasions, for instance, I have been asked by elite respondents or their personal assistants what they need to prepare for before the interview, which suggests that they consider the interview as some form of challenge or justification for what they do.

In many cases, it is not necessarily the figureheads or leaders of organizations and institutions who have the greatest claim to elite status but those who hold important social networks, social capital, and strategic positions within social structures because they are better able to exert influence (Burt 1992; Parry 1998; Smith 2005; Woods 1998). An elite status can also change, with people both gaining and losing theirs over time. In addition, it is geographically specific, with people holding elite status in some but not all locations. In short, it is clear that the term elite can mean many things in different contexts, which explains the range of definitions. The purpose here is not to critique these other definitions but rather to highlight the variety of perspectives.

When referring to my research, I define elites as those who occupy senior-management- and board-level positions within organizations. This is a similar scope of definition to Zuckerman’s (1972) but focuses on a level immediately below her ultraelite subjects. My definition is narrower than McDowell’s (1998) because it is clear in the context of my research that these people have significant decision-making influence within and outside of the firm and therefore present a unique challenge to interview. I deliberately use the term elite more broadly when drawing on examples from the theoretical literature in order to compare my experiences with those who have researched similar groups.

”Changing Dispositions among the Upwardly Mobile” by Curl, Lareau, and Wu ( 2018 )

There is growing interest in the role of cultural practices in undergirding the social stratification system. For example, Lamont et al. (2014) critically assess the preoccupation with economic dimensions of social stratification and call for more developed cultural models of the transmission of inequality. The importance of cultural factors in the maintenance of social inequality has also received empirical attention from some younger scholars, including Calarco (2011, 2014) and Streib (2015). Yet questions remain regarding the degree to which economic position is tied to cultural sensibilities and the ways in which these cultural sensibilities are imprinted on the self or are subject to change. Although habitus is a core concept in Bourdieu’s theory of social reproduction, there is limited empirical attention to the precise areas of the habitus that can be subject to change during upward mobility as well as the ramifications of these changes for family life.

In Bourdieu’s (1984) highly influential work on the importance of class-based cultural dispositions, habitus is defined as a “durable system of dispositions” created in childhood. The habitus provides a “matrix of perceptions” that seems natural while also structuring future actions and pathways. In many of his writings, Bourdieu emphasized the durability of cultural tastes and dispositions and did not consider empirically whether these dispositions might be changed or altered throughout one’s life (Swartz 1997). His theoretical work does permit the possibility of upward mobility and transformation, however, through the ability of the habitus to “improvise” or “change” due to “new experiences” (Friedman 2016:131). Researchers have differed in opinion on the durability of the habitus and its ability to change (King 2000). Based on marital conflict in cross-class marriages, for instance, Streib (2015) argues that cultural dispositions of individuals raised in working-class families are deeply embedded and largely unchanging. In a somewhat different vein, Horvat and Davis (2011:152) argue that young adults enrolled in an alternative educational program undergo important shifts in their self-perception, such as “self-esteem” and their “ability to accomplish something of value.” Others argue there is variability in the degree to which habitus changes dependent on life experience and personality (Christodoulou and Spyridakis 2016). Recently, additional studies have investigated the habitus as it intersects with lifestyle through the lens of meaning making (Ambrasat et al. 2016). There is, therefore, ample discussion of class-based cultural practices in self-perception (Horvat and Davis 2011), lifestyle (Ambrasat et al. 2016), and other forms of taste (Andrews 2012; Bourdieu 1984), yet researchers have not sufficiently delineated which aspects of the habitus might change through upward mobility or which specific dimensions of life prompt moments of class-based conflict.

Bourdieu (1999:511; 2004) acknowledged simmering tensions between the durable aspects of habitus and those aspects that have been transformed—that is, a “fractured” or “cleft” habitus. Others have explored these tensions as a “divided” or “fragmented” habitus (Baxter and Britton 2001; Lee and Kramer 2013). Each of these conceptions of the habitus implies that changes in cultural dispositions are possible but come with costs. Exploration of the specific aspects of one’s habitus that can change and generate conflict contributes to this literature.

Scholars have also studied the costs associated with academic success for working-class undergraduates (Hurst 2010; Lee and Kramer 2013; London 1989; Reay 2017; Rondini 2016; Stuber 2011), but we know little about the lasting effects on adults. For instance, Lee and Kramer (2013) point to cross-class tensions as family and friends criticize upwardly mobile individuals for their newly acquired cultural dispositions. Documenting the tension many working-class students experience with their friends and families of origin, they find that the source of their pain or struggle is “shaped not only by their interactions with non-mobile family and friends but also within their own minds, by their own assessments of their social positions, and by how those positions are interpreted by others” (Lee and Kramer 2013:29). Hurst (2010) also explores the experiences of undergraduates who have been academically successful and the costs associated with that success. She finds that decisions about “class allegiance and identity” are required aspects of what it means to “becom[e] educated” (4) and that working-class students deal with these cultural changes differently. Jack (2014, 2016) also argues that there is diversity among lower-income students, which yields varied college experiences. Naming two groups, the “doubly disadvantaged” and the “privileged poor,” he argues that previous experience with “elite environments” (2014:456) prior to college informs students’ ability to take on dominant cultural practices, particularly around engagement, such as help seeking or meeting with professors (2016). These studies shed light on the role college might play as a “lever for mobility” (2016:15) and discuss the pain and difficulty associated with upward mobility among undergraduates, but the studies do not illuminate how these tensions unfold in adulthood. Neither have they sufficiently addressed potential enduring tensions with extended family members as well as the specific nature of the difficulties.

Some scholars point to the positive outcomes upwardly mobile youth (Lehmann 2009) and adults (Stuber 2005) experience when they maintain a different habitus than their newly acquired class position, although, as Jack (2014, 2016) shows, those experiences may vary depending on one’s experience with elite environments in their youth. Researchers have not sufficiently explored the specific aspects of the habitus that upwardly mobile adults change or the conflicts that emerge with family and childhood friends as they reach adulthood and experience colliding social worlds. We contribute to this scholarship with clear examples of self-reported changes to one’s cultural dispositions in three specific areas: “horizons,” food and health, and communication. We link these changes to enduring tension with family members, friends, and colleagues and explore varied responses to this tension based on race.

Writing a Literature Review

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A literature review is a document or section of a document that collects key sources on a topic and discusses those sources in conversation with each other (also called synthesis ). The lit review is an important genre in many disciplines, not just literature (i.e., the study of works of literature such as novels and plays). When we say “literature review” or refer to “the literature,” we are talking about the research ( scholarship ) in a given field. You will often see the terms “the research,” “the scholarship,” and “the literature” used mostly interchangeably.

Where, when, and why would I write a lit review?

There are a number of different situations where you might write a literature review, each with slightly different expectations; different disciplines, too, have field-specific expectations for what a literature review is and does. For instance, in the humanities, authors might include more overt argumentation and interpretation of source material in their literature reviews, whereas in the sciences, authors are more likely to report study designs and results in their literature reviews; these differences reflect these disciplines’ purposes and conventions in scholarship. You should always look at examples from your own discipline and talk to professors or mentors in your field to be sure you understand your discipline’s conventions, for literature reviews as well as for any other genre.

A literature review can be a part of a research paper or scholarly article, usually falling after the introduction and before the research methods sections. In these cases, the lit review just needs to cover scholarship that is important to the issue you are writing about; sometimes it will also cover key sources that informed your research methodology.

Lit reviews can also be standalone pieces, either as assignments in a class or as publications. In a class, a lit review may be assigned to help students familiarize themselves with a topic and with scholarship in their field, get an idea of the other researchers working on the topic they’re interested in, find gaps in existing research in order to propose new projects, and/or develop a theoretical framework and methodology for later research. As a publication, a lit review usually is meant to help make other scholars’ lives easier by collecting and summarizing, synthesizing, and analyzing existing research on a topic. This can be especially helpful for students or scholars getting into a new research area, or for directing an entire community of scholars toward questions that have not yet been answered.

What are the parts of a lit review?

Most lit reviews use a basic introduction-body-conclusion structure; if your lit review is part of a larger paper, the introduction and conclusion pieces may be just a few sentences while you focus most of your attention on the body. If your lit review is a standalone piece, the introduction and conclusion take up more space and give you a place to discuss your goals, research methods, and conclusions separately from where you discuss the literature itself.

Introduction:

An introductory paragraph that explains what your working topic and thesis is
A forecast of key topics or texts that will appear in the review
Potentially, a description of how you found sources and how you analyzed them for inclusion and discussion in the review (more often found in published, standalone literature reviews than in lit review sections in an article or research paper)
Summarize and synthesize: Give an overview of the main points of each source and combine them into a coherent whole
Analyze and interpret: Don’t just paraphrase other researchers – add your own interpretations where possible, discussing the significance of findings in relation to the literature as a whole
Critically Evaluate: Mention the strengths and weaknesses of your sources
Write in well-structured paragraphs: Use transition words and topic sentence to draw connections, comparisons, and contrasts.

Conclusion:

Summarize the key findings you have taken from the literature and emphasize their significance
Connect it back to your primary research question

How should I organize my lit review?

Lit reviews can take many different organizational patterns depending on what you are trying to accomplish with the review. Here are some examples:

Chronological : The simplest approach is to trace the development of the topic over time, which helps familiarize the audience with the topic (for instance if you are introducing something that is not commonly known in your field). If you choose this strategy, be careful to avoid simply listing and summarizing sources in order. Try to analyze the patterns, turning points, and key debates that have shaped the direction of the field. Give your interpretation of how and why certain developments occurred (as mentioned previously, this may not be appropriate in your discipline — check with a teacher or mentor if you’re unsure).
Thematic : If you have found some recurring central themes that you will continue working with throughout your piece, you can organize your literature review into subsections that address different aspects of the topic. For example, if you are reviewing literature about women and religion, key themes can include the role of women in churches and the religious attitude towards women.
Qualitative versus quantitative research
Empirical versus theoretical scholarship
Divide the research by sociological, historical, or cultural sources
Theoretical : In many humanities articles, the literature review is the foundation for the theoretical framework. You can use it to discuss various theories, models, and definitions of key concepts. You can argue for the relevance of a specific theoretical approach or combine various theorical concepts to create a framework for your research.

What are some strategies or tips I can use while writing my lit review?

Any lit review is only as good as the research it discusses; make sure your sources are well-chosen and your research is thorough. Don’t be afraid to do more research if you discover a new thread as you’re writing. More info on the research process is available in our "Conducting Research" resources .

As you’re doing your research, create an annotated bibliography ( see our page on the this type of document ). Much of the information used in an annotated bibliography can be used also in a literature review, so you’ll be not only partially drafting your lit review as you research, but also developing your sense of the larger conversation going on among scholars, professionals, and any other stakeholders in your topic.

Usually you will need to synthesize research rather than just summarizing it. This means drawing connections between sources to create a picture of the scholarly conversation on a topic over time. Many student writers struggle to synthesize because they feel they don’t have anything to add to the scholars they are citing; here are some strategies to help you:

It often helps to remember that the point of these kinds of syntheses is to show your readers how you understand your research, to help them read the rest of your paper.
Writing teachers often say synthesis is like hosting a dinner party: imagine all your sources are together in a room, discussing your topic. What are they saying to each other?
Look at the in-text citations in each paragraph. Are you citing just one source for each paragraph? This usually indicates summary only. When you have multiple sources cited in a paragraph, you are more likely to be synthesizing them (not always, but often
Read more about synthesis here.

The most interesting literature reviews are often written as arguments (again, as mentioned at the beginning of the page, this is discipline-specific and doesn’t work for all situations). Often, the literature review is where you can establish your research as filling a particular gap or as relevant in a particular way. You have some chance to do this in your introduction in an article, but the literature review section gives a more extended opportunity to establish the conversation in the way you would like your readers to see it. You can choose the intellectual lineage you would like to be part of and whose definitions matter most to your thinking (mostly humanities-specific, but this goes for sciences as well). In addressing these points, you argue for your place in the conversation, which tends to make the lit review more compelling than a simple reporting of other sources.

UConn Library
Literature Review: The What, Why and How-to Guide
Introduction

Literature Review: The What, Why and How-to Guide — Introduction

Getting Started
How to Pick a Topic
Strategies to Find Sources
Evaluating Sources & Lit. Reviews
Tips for Writing Literature Reviews
Writing Literature Review: Useful Sites
Citation Resources
Other Academic Writings

What are Literature Reviews?

So, what is a literature review? "A literature review is an account of what has been published on a topic by accredited scholars and researchers. In writing the literature review, your purpose is to convey to your reader what knowledge and ideas have been established on a topic, and what their strengths and weaknesses are. As a piece of writing, the literature review must be defined by a guiding concept (e.g., your research objective, the problem or issue you are discussing, or your argumentative thesis). It is not just a descriptive list of the material available, or a set of summaries." Taylor, D. The literature review: A few tips on conducting it . University of Toronto Health Sciences Writing Centre.

Goals of Literature Reviews

What are the goals of creating a Literature Review? A literature could be written to accomplish different aims:

To develop a theory or evaluate an existing theory
To summarize the historical or existing state of a research topic
Identify a problem in a field of research

Baumeister, R. F., & Leary, M. R. (1997). Writing narrative literature reviews . Review of General Psychology , 1 (3), 311-320.

What kinds of sources require a Literature Review?

A research paper assigned in a course
A thesis or dissertation
A grant proposal
An article intended for publication in a journal

All these instances require you to collect what has been written about your research topic so that you can demonstrate how your own research sheds new light on the topic.

Types of Literature Reviews

What kinds of literature reviews are written?

Narrative review: The purpose of this type of review is to describe the current state of the research on a specific topic/research and to offer a critical analysis of the literature reviewed. Studies are grouped by research/theoretical categories, and themes and trends, strengths and weakness, and gaps are identified. The review ends with a conclusion section which summarizes the findings regarding the state of the research of the specific study, the gaps identify and if applicable, explains how the author's research will address gaps identify in the review and expand the knowledge on the topic reviewed.

Example : Predictors and Outcomes of U.S. Quality Maternity Leave: A Review and Conceptual Framework: 10.1177/08948453211037398

Systematic review : "The authors of a systematic review use a specific procedure to search the research literature, select the studies to include in their review, and critically evaluate the studies they find." (p. 139). Nelson, L. K. (2013). Research in Communication Sciences and Disorders . Plural Publishing.

Example : The effect of leave policies on increasing fertility: a systematic review: 10.1057/s41599-022-01270-w

Meta-analysis : "Meta-analysis is a method of reviewing research findings in a quantitative fashion by transforming the data from individual studies into what is called an effect size and then pooling and analyzing this information. The basic goal in meta-analysis is to explain why different outcomes have occurred in different studies." (p. 197). Roberts, M. C., & Ilardi, S. S. (2003). Handbook of Research Methods in Clinical Psychology . Blackwell Publishing.

Example : Employment Instability and Fertility in Europe: A Meta-Analysis: 10.1215/00703370-9164737

Meta-synthesis : "Qualitative meta-synthesis is a type of qualitative study that uses as data the findings from other qualitative studies linked by the same or related topic." (p.312). Zimmer, L. (2006). Qualitative meta-synthesis: A question of dialoguing with texts . Journal of Advanced Nursing , 53 (3), 311-318.

Example : Women’s perspectives on career successes and barriers: A qualitative meta-synthesis: 10.1177/05390184221113735

Literature Reviews in the Health Sciences

UConn Health subject guide on systematic reviews Explanation of the different review types used in health sciences literature as well as tools to help you find the right review type
<< Previous: Getting Started
Next: How to Pick a Topic >>
Last Updated: Sep 21, 2022 2:16 PM
URL: https://guides.lib.uconn.edu/literaturereview

World Conference on Qualitative Research

WCQR 2022: Computer Supported Qualitative Research pp 194–210 Cite as

How to Operate Literature Review Through Qualitative and Quantitative Analysis Integration?

Eduardo Amadeu Dutra Moresi ORCID: orcid.org/0000-0001-6058-3883 13 ,
Isabel Pinho ORCID: orcid.org/0000-0003-1714-8979 14 &
António Pedro Costa ORCID: orcid.org/0000-0002-4644-5879 14
Conference paper
First Online: 05 May 2022

461 Accesses

2 Citations

Part of the book series: Lecture Notes in Networks and Systems ((LNNS,volume 466))

Usually, a literature review takes time and becomes a demanding step in any research project. The proposal presented in this article intends to structure this work in an organised and transparent way for all project participants and the structured elaboration of its report. Integrating qualitative and quantitative analysis provides opportunities to carry out a solid, practical, and in-depth literature review. The purpose of this article is to present a guide that explores the potentials of qualitative and quantitative analysis integration to develop a solid and replicable literature review. The paper proposes an integrative approach comprising six steps: 1) research design; 2) Data Collection for bibliometric analysis; 3) Search string refinement; 4) Bibliometric analysis; 5) qualitative analysis; and 6) report and dissemination of research results. These guidelines can facilitate the bibliographic analysis process and relevant article sample selection. Once the sample of publications is defined, it is possible to conduct a deep analysis through Content Analysis. Software tools, such as R Bibliometrix, VOSviewer, Gephi, yEd and webQDA, can be used for practical work during all collection, analysis, and reporting processes. From a large amount of data, selecting a sample of relevant literature is facilitated by interpreting bibliometric results. The specification of the methodology allows the replication and updating of the literature review in an interactive, systematic, and collaborative way giving a more transparent and organised approach to improving the literature review.

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Moresi, E.A.D., Pinho, I., Costa, A.P. (2022). How to Operate Literature Review Through Qualitative and Quantitative Analysis Integration?. In: Costa, A.P., Moreira, A., Sánchez‑Gómez, M.C., Wa-Mbaleka, S. (eds) Computer Supported Qualitative Research. WCQR 2022. Lecture Notes in Networks and Systems, vol 466. Springer, Cham. https://doi.org/10.1007/978-3-031-04680-3_13

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A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence-Based Practice in Nursing and Health Care

Affiliations.

1 PhD candidate, School of Nursing and Midwifey, Monash University, and Clinical Nurse Specialist, Adult and Pediatric Intensive Care Unit, Monash Health, Melbourne, Victoria, Australia.
2 Lecturer, School of Nursing and Midwifery, Monash University, Melbourne, Victoria, Australia.
3 Senior Lecturer, School of Nursing and Midwifery, Monash University, Melbourne, Victoria, Australia.
PMID: 26790142
DOI: 10.1111/wvn.12134

Background: The qualitative systematic review is a rapidly developing area of nursing research. In order to present trustworthy, high-quality recommendations, such reviews should be based on a review protocol to minimize bias and enhance transparency and reproducibility. Although there are a number of resources available to guide researchers in developing a quantitative review protocol, very few resources exist for qualitative reviews.

Aims: To guide researchers through the process of developing a qualitative systematic review protocol, using an example review question.

Methodology: The key elements required in a systematic review protocol are discussed, with a focus on application to qualitative reviews: Development of a research question; formulation of key search terms and strategies; designing a multistage review process; critical appraisal of qualitative literature; development of data extraction techniques; and data synthesis. The paper highlights important considerations during the protocol development process, and uses a previously developed review question as a working example.

Implications for research: This paper will assist novice researchers in developing a qualitative systematic review protocol. By providing a worked example of a protocol, the paper encourages the development of review protocols, enhancing the trustworthiness and value of the completed qualitative systematic review findings.

Linking evidence to action: Qualitative systematic reviews should be based on well planned, peer reviewed protocols to enhance the trustworthiness of results and thus their usefulness in clinical practice. Protocols should outline, in detail, the processes which will be used to undertake the review, including key search terms, inclusion and exclusion criteria, and the methods used for critical appraisal, data extraction and data analysis to facilitate transparency of the review process. Additionally, journals should encourage and support the publication of review protocols, and should require reference to a protocol prior to publication of the review results.

Keywords: guidelines; meta synthesis; qualitative; systematic review protocol.

Evidence-Based Practice / standards*
Information Seeking Behavior
Nursing / methods
Qualitative Research*
Research Design / standards*
Systematic Reviews as Topic*
Writing / standards*

Dissertations and research projects

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Planning your research

Developing a theoretical framework

Reflecting on your position, extended literature reviews, presenting qualitative data.

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What is a theoretical framework?

Developing a theoretical framework for your dissertation is one of the key elements of a qualitative research project. Through writing your literature review, you are likely to have identified either a problem that need ‘fixing’ or a gap that your research may begin to fill.

The theoretical framework is your toolbox . In the toolbox are your handy tools: a set of theories, concepts, ideas and hypotheses that you will use to build a solution to the research problem or gap you have identified.

The methodology is the instruction manual: the procedure and steps you have taken, using your chosen tools, to tackle the research problem.

Why do I need a theoretical framework?

Developing a theoretical framework shows that you have thought critically about the different ways to approach your topic, and that you have made a well-reasoned and evidenced decision about which approach will work best. theoretical frameworks are also necessary for solving complex problems or issues from the literature, showing that you have the skills to think creatively and improvise to answer your research questions. they also allow researchers to establish new theories and approaches, that future research may go on to develop., how do i create a theoretical framework for my dissertation.

First, select your tools. You are likely to need a variety of tools in qualitative research – different theories, models or concepts – to help you tackle different parts of your research question.

An overview of what to include in a theoretical framework: theories, models, ideologies, concepts, assumptions and perspectives.

When deciding what tools would be best for the job of answering your research questions or problem, explore what existing research in your area has used. You may find that there is a ‘standard toolbox’ for qualitative research in your field that you can borrow from or apply to your own research.

You will need to justify why your chosen tools are best for the job of answering your research questions, at what stage they are most relevant, and how they relate to each other. Some theories or models will neatly fit together and appear in the toolboxes of other researchers. However, you may wish to incorporate a model or idea that is not typical for your research area – the ‘odd one out’ in your toolbox. If this is the case, make sure you justify and account for why it is useful to you, and look for ways that it can be used in partnership with the other tools you are using.

You should also be honest about limitations, or where you need to improvise (for example, if the ‘right’ tool or approach doesn’t exist in your area).

This video from the Skills Centre includes an overview and example of how you might create a theoretical framework for your dissertation:

How do I choose the 'right' approach?

When designing your framework and choosing what to include, it can often be difficult to know if you’ve chosen the ‘right’ approach for your research questions. One way to check this is to look for consistency between your objectives, the literature in your framework, and your overall ethos for the research. This means ensuring that the literature you have used not only contributes to answering your research objectives, but that you also use theories and models that are true to your beliefs as a researcher.

Reflecting on your values and your overall ambition for the project can be a helpful step in making these decisions, as it can help you to fully connect your methodology and methods to your research aims.

Should I reflect on my position as a researcher?

If you feel your position as a researcher has influenced your choice of methods or procedure in any way, the methodology is a good place to reflect on this. Positionality acknowledges that no researcher is entirely objective: we are all, to some extent, influenced by prior learning, experiences, knowledge, and personal biases. This is particularly true in qualitative research or practice-based research, where the student is acting as a researcher in their own workplace, where they are otherwise considered a practitioner/professional. It's also important to reflect on your positionality if you belong to the same community as your participants where this is the grounds for their involvement in the research (ie. you are a mature student interviewing other mature learners about their experences in higher education).

The following questions can help you to reflect on your positionality and gauge whether this is an important section to include in your dissertation (for some people, this section isn’t necessary or relevant):

How might my personal history influence how I approach the topic?
How am I positioned in relation to this knowledge? Am I being influenced by prior learning or knowledge from outside of this course?
How does my gender/social class/ ethnicity/ culture influence my positioning in relation to this topic?
Do I share any attributes with my participants? Are we part of a s hared community? How might this have influenced our relationship and my role in interviews/observations?
Am I invested in the outcomes on a personal level? Who is this research for and who will feel the benefits?

One option for qualitative projects is to write an extended literature review. This type of project does not require you to collect any new data. Instead, you should focus on synthesising a broad range of literature to offer a new perspective on a research problem or question.

The main difference between an extended literature review and a dissertation where primary data is collected, is in the presentation of the methodology, results and discussion sections. This is because extended literature reviews do not actively involve participants or primary data collection, so there is no need to outline a procedure for data collection (the methodology) or to present and interpret ‘data’ (in the form of interview transcripts, numerical data, observations etc.) You will have much more freedom to decide which sections of the dissertation should be combined, and whether new chapters or sections should be added.

Here is an overview of a common structure for an extended literature review:

A structure for the extended literature review, showing the results divided into multiple themed chapters.

Introduction

Provide background information and context to set the ‘backdrop’ for your project.
Explain the value and relevance of your research in this context. Outline what do you hope to contribute with your dissertation.
Clarify a specific area of focus.
Introduce your research aims (or problem) and objectives.

Literature review

You will need to write a short, overview literature review to introduce the main theories, concepts and key research areas that you will explore in your dissertation. This set of texts – which may be theoretical, research-based, practice-based or policies – form your theoretical framework. In other words, by bringing these texts together in the literature review, you are creating a lens that you can then apply to more focused examples or scenarios in your discussion chapters.

Methodology

As you will not be collecting primary data, your methodology will be quite different from a typical dissertation. You will need to set out the process and procedure you used to find and narrow down your literature. This is also known as a search strategy.

Including your search strategy

A search strategy explains how you have narrowed down your literature to identify key studies and areas of focus. This often takes the form of a search strategy table, included as an appendix at the end of the dissertation. If included, this section takes the place of the traditional 'methodology' section.

If you choose to include a search strategy table, you should also give an overview of your reading process in the main body of the dissertation. Think of this as a chronology of the practical steps you took and your justification for doing so at each stage, such as:

Your key terms, alternatives and synonyms, and any terms that you chose to exclude.
Your choice and combination of databases;
Your inclusion/exclusion criteria, when they were applied and why. This includes filters such as language of publication, date, and country of origin;
You should also explain which terms you combined to form search phrases and your use of Boolean searching (AND, OR, NOT);
Your use of citation searching (selecting articles from the bibliography of a chosen journal article to further your search).
Your use of any search models, such as PICO and SPIDER to help shape your approach.
Search strategy template A simple template for recording your literature searching. This can be included as an appendix to show your search strategy.

The discussion section of an extended literature review is the most flexible in terms of structure. Think of this section as a series of short case studies or ‘windows’ on your research. In this section you will apply the theoretical framework you formed in the literature review – a combination of theories, models and ideas that explain your approach to the topic – to a series of different examples and scenarios. These are usually presented as separate discussion ‘chapters’ in the dissertation, in an order that you feel best fits your argument.

Think about an order for these discussion sections or chapters that helps to tell the story of your research. One common approach is to structure these sections by common themes or concepts that help to draw your sources together. You might also opt for a chronological structure if your dissertation aims to show change or development over time. Another option is to deliberately show where there is a lack of chronology or narrative across your case studies, by ordering them in a fragmentary order! You will be able to reflect upon the structure of these chapters elsewhere in the dissertation, explaining and defending your decision in the methodology and conclusion.

A summary of your key findings – what you have concluded from your research, and how far you have been able to successfully answer your research questions.

Recommendations – for improvements to your own study, for future research in the area, and for your field more widely.
Emphasise your contributions to knowledge and what you have achieved.

Alternative structure

Depending on your research aims, and whether you are working with a case-study type approach (where each section of the dissertation considers a different example or concept through the lens established in your literature review), you might opt for one of the following structures:

Splitting the literature review across different chapters:

This structure allows you to pull apart the traditional literature review, introducing it little by little with each of your themed chapters. This approach works well for dissertations that attempt to show change or difference over time, as the relevant literature for that section or period can be introduced gradually to the reader.

Whichever structure you opt for, remember to explain and justify your approach. A marker will be interested in why you decided on your chosen structure, what it allows you to achieve/brings to the project and what alternatives you considered and rejected in the planning process. Here are some example sentence starters:

In qualitative studies, your results are often presented alongside the discussion, as it is difficult to include this data in a meaningful way without explanation and interpretation. In the dsicussion section, aim to structure your work thematically, moving through the key concepts or ideas that have emerged from your qualitative data. Use extracts from your data collection - interviews, focus groups, observations - to illustrate where these themes are most prominent, and refer back to the sources from your literature review to help draw conclusions.

Here's an example of how your data could be presented in paragraph format in this section:

Example from 'Reporting and discussing your findings ', Monash University .

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Lau F, Kuziemsky C, editors. Handbook of eHealth Evaluation: An Evidence-based Approach [Internet]. Victoria (BC): University of Victoria; 2017 Feb 27.

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Handbook of eHealth Evaluation: An Evidence-based Approach [Internet].

Chapter 9 methods for literature reviews.

Guy Paré and Spyros Kitsiou .

9.1. Introduction

Literature reviews play a critical role in scholarship because science remains, first and foremost, a cumulative endeavour ( vom Brocke et al., 2009 ). As in any academic discipline, rigorous knowledge syntheses are becoming indispensable in keeping up with an exponentially growing eHealth literature, assisting practitioners, academics, and graduate students in finding, evaluating, and synthesizing the contents of many empirical and conceptual papers. Among other methods, literature reviews are essential for: (a) identifying what has been written on a subject or topic; (b) determining the extent to which a specific research area reveals any interpretable trends or patterns; (c) aggregating empirical findings related to a narrow research question to support evidence-based practice; (d) generating new frameworks and theories; and (e) identifying topics or questions requiring more investigation ( Paré, Trudel, Jaana, & Kitsiou, 2015 ).

Literature reviews can take two major forms. The most prevalent one is the “literature review” or “background” section within a journal paper or a chapter in a graduate thesis. This section synthesizes the extant literature and usually identifies the gaps in knowledge that the empirical study addresses ( Sylvester, Tate, & Johnstone, 2013 ). It may also provide a theoretical foundation for the proposed study, substantiate the presence of the research problem, justify the research as one that contributes something new to the cumulated knowledge, or validate the methods and approaches for the proposed study ( Hart, 1998 ; Levy & Ellis, 2006 ).

The second form of literature review, which is the focus of this chapter, constitutes an original and valuable work of research in and of itself ( Paré et al., 2015 ). Rather than providing a base for a researcher’s own work, it creates a solid starting point for all members of the community interested in a particular area or topic ( Mulrow, 1987 ). The so-called “review article” is a journal-length paper which has an overarching purpose to synthesize the literature in a field, without collecting or analyzing any primary data ( Green, Johnson, & Adams, 2006 ).

When appropriately conducted, review articles represent powerful information sources for practitioners looking for state-of-the art evidence to guide their decision-making and work practices ( Paré et al., 2015 ). Further, high-quality reviews become frequently cited pieces of work which researchers seek out as a first clear outline of the literature when undertaking empirical studies ( Cooper, 1988 ; Rowe, 2014 ). Scholars who track and gauge the impact of articles have found that review papers are cited and downloaded more often than any other type of published article ( Cronin, Ryan, & Coughlan, 2008 ; Montori, Wilczynski, Morgan, Haynes, & Hedges, 2003 ; Patsopoulos, Analatos, & Ioannidis, 2005 ). The reason for their popularity may be the fact that reading the review enables one to have an overview, if not a detailed knowledge of the area in question, as well as references to the most useful primary sources ( Cronin et al., 2008 ). Although they are not easy to conduct, the commitment to complete a review article provides a tremendous service to one’s academic community ( Paré et al., 2015 ; Petticrew & Roberts, 2006 ). Most, if not all, peer-reviewed journals in the fields of medical informatics publish review articles of some type.

The main objectives of this chapter are fourfold: (a) to provide an overview of the major steps and activities involved in conducting a stand-alone literature review; (b) to describe and contrast the different types of review articles that can contribute to the eHealth knowledge base; (c) to illustrate each review type with one or two examples from the eHealth literature; and (d) to provide a series of recommendations for prospective authors of review articles in this domain.

9.2. Overview of the Literature Review Process and Steps

As explained in Templier and Paré (2015) , there are six generic steps involved in conducting a review article:

formulating the research question(s) and objective(s),
searching the extant literature,
screening for inclusion,
assessing the quality of primary studies,
extracting data, and
analyzing data.

Although these steps are presented here in sequential order, one must keep in mind that the review process can be iterative and that many activities can be initiated during the planning stage and later refined during subsequent phases ( Finfgeld-Connett & Johnson, 2013 ; Kitchenham & Charters, 2007 ).

Formulating the research question(s) and objective(s): As a first step, members of the review team must appropriately justify the need for the review itself ( Petticrew & Roberts, 2006 ), identify the review’s main objective(s) ( Okoli & Schabram, 2010 ), and define the concepts or variables at the heart of their synthesis ( Cooper & Hedges, 2009 ; Webster & Watson, 2002 ). Importantly, they also need to articulate the research question(s) they propose to investigate ( Kitchenham & Charters, 2007 ). In this regard, we concur with Jesson, Matheson, and Lacey (2011) that clearly articulated research questions are key ingredients that guide the entire review methodology; they underscore the type of information that is needed, inform the search for and selection of relevant literature, and guide or orient the subsequent analysis. Searching the extant literature: The next step consists of searching the literature and making decisions about the suitability of material to be considered in the review ( Cooper, 1988 ). There exist three main coverage strategies. First, exhaustive coverage means an effort is made to be as comprehensive as possible in order to ensure that all relevant studies, published and unpublished, are included in the review and, thus, conclusions are based on this all-inclusive knowledge base. The second type of coverage consists of presenting materials that are representative of most other works in a given field or area. Often authors who adopt this strategy will search for relevant articles in a small number of top-tier journals in a field ( Paré et al., 2015 ). In the third strategy, the review team concentrates on prior works that have been central or pivotal to a particular topic. This may include empirical studies or conceptual papers that initiated a line of investigation, changed how problems or questions were framed, introduced new methods or concepts, or engendered important debate ( Cooper, 1988 ). Screening for inclusion: The following step consists of evaluating the applicability of the material identified in the preceding step ( Levy & Ellis, 2006 ; vom Brocke et al., 2009 ). Once a group of potential studies has been identified, members of the review team must screen them to determine their relevance ( Petticrew & Roberts, 2006 ). A set of predetermined rules provides a basis for including or excluding certain studies. This exercise requires a significant investment on the part of researchers, who must ensure enhanced objectivity and avoid biases or mistakes. As discussed later in this chapter, for certain types of reviews there must be at least two independent reviewers involved in the screening process and a procedure to resolve disagreements must also be in place ( Liberati et al., 2009 ; Shea et al., 2009 ). Assessing the quality of primary studies: In addition to screening material for inclusion, members of the review team may need to assess the scientific quality of the selected studies, that is, appraise the rigour of the research design and methods. Such formal assessment, which is usually conducted independently by at least two coders, helps members of the review team refine which studies to include in the final sample, determine whether or not the differences in quality may affect their conclusions, or guide how they analyze the data and interpret the findings ( Petticrew & Roberts, 2006 ). Ascribing quality scores to each primary study or considering through domain-based evaluations which study components have or have not been designed and executed appropriately makes it possible to reflect on the extent to which the selected study addresses possible biases and maximizes validity ( Shea et al., 2009 ). Extracting data: The following step involves gathering or extracting applicable information from each primary study included in the sample and deciding what is relevant to the problem of interest ( Cooper & Hedges, 2009 ). Indeed, the type of data that should be recorded mainly depends on the initial research questions ( Okoli & Schabram, 2010 ). However, important information may also be gathered about how, when, where and by whom the primary study was conducted, the research design and methods, or qualitative/quantitative results ( Cooper & Hedges, 2009 ). Analyzing and synthesizing data : As a final step, members of the review team must collate, summarize, aggregate, organize, and compare the evidence extracted from the included studies. The extracted data must be presented in a meaningful way that suggests a new contribution to the extant literature ( Jesson et al., 2011 ). Webster and Watson (2002) warn researchers that literature reviews should be much more than lists of papers and should provide a coherent lens to make sense of extant knowledge on a given topic. There exist several methods and techniques for synthesizing quantitative (e.g., frequency analysis, meta-analysis) and qualitative (e.g., grounded theory, narrative analysis, meta-ethnography) evidence ( Dixon-Woods, Agarwal, Jones, Young, & Sutton, 2005 ; Thomas & Harden, 2008 ).

9.3. Types of Review Articles and Brief Illustrations

EHealth researchers have at their disposal a number of approaches and methods for making sense out of existing literature, all with the purpose of casting current research findings into historical contexts or explaining contradictions that might exist among a set of primary research studies conducted on a particular topic. Our classification scheme is largely inspired from Paré and colleagues’ (2015) typology. Below we present and illustrate those review types that we feel are central to the growth and development of the eHealth domain.

9.3.1. Narrative Reviews

The narrative review is the “traditional” way of reviewing the extant literature and is skewed towards a qualitative interpretation of prior knowledge ( Sylvester et al., 2013 ). Put simply, a narrative review attempts to summarize or synthesize what has been written on a particular topic but does not seek generalization or cumulative knowledge from what is reviewed ( Davies, 2000 ; Green et al., 2006 ). Instead, the review team often undertakes the task of accumulating and synthesizing the literature to demonstrate the value of a particular point of view ( Baumeister & Leary, 1997 ). As such, reviewers may selectively ignore or limit the attention paid to certain studies in order to make a point. In this rather unsystematic approach, the selection of information from primary articles is subjective, lacks explicit criteria for inclusion and can lead to biased interpretations or inferences ( Green et al., 2006 ). There are several narrative reviews in the particular eHealth domain, as in all fields, which follow such an unstructured approach ( Silva et al., 2015 ; Paul et al., 2015 ).

Despite these criticisms, this type of review can be very useful in gathering together a volume of literature in a specific subject area and synthesizing it. As mentioned above, its primary purpose is to provide the reader with a comprehensive background for understanding current knowledge and highlighting the significance of new research ( Cronin et al., 2008 ). Faculty like to use narrative reviews in the classroom because they are often more up to date than textbooks, provide a single source for students to reference, and expose students to peer-reviewed literature ( Green et al., 2006 ). For researchers, narrative reviews can inspire research ideas by identifying gaps or inconsistencies in a body of knowledge, thus helping researchers to determine research questions or formulate hypotheses. Importantly, narrative reviews can also be used as educational articles to bring practitioners up to date with certain topics of issues ( Green et al., 2006 ).

Recently, there have been several efforts to introduce more rigour in narrative reviews that will elucidate common pitfalls and bring changes into their publication standards. Information systems researchers, among others, have contributed to advancing knowledge on how to structure a “traditional” review. For instance, Levy and Ellis (2006) proposed a generic framework for conducting such reviews. Their model follows the systematic data processing approach comprised of three steps, namely: (a) literature search and screening; (b) data extraction and analysis; and (c) writing the literature review. They provide detailed and very helpful instructions on how to conduct each step of the review process. As another methodological contribution, vom Brocke et al. (2009) offered a series of guidelines for conducting literature reviews, with a particular focus on how to search and extract the relevant body of knowledge. Last, Bandara, Miskon, and Fielt (2011) proposed a structured, predefined and tool-supported method to identify primary studies within a feasible scope, extract relevant content from identified articles, synthesize and analyze the findings, and effectively write and present the results of the literature review. We highly recommend that prospective authors of narrative reviews consult these useful sources before embarking on their work.

Darlow and Wen (2015) provide a good example of a highly structured narrative review in the eHealth field. These authors synthesized published articles that describe the development process of mobile health ( m-health ) interventions for patients’ cancer care self-management. As in most narrative reviews, the scope of the research questions being investigated is broad: (a) how development of these systems are carried out; (b) which methods are used to investigate these systems; and (c) what conclusions can be drawn as a result of the development of these systems. To provide clear answers to these questions, a literature search was conducted on six electronic databases and Google Scholar . The search was performed using several terms and free text words, combining them in an appropriate manner. Four inclusion and three exclusion criteria were utilized during the screening process. Both authors independently reviewed each of the identified articles to determine eligibility and extract study information. A flow diagram shows the number of studies identified, screened, and included or excluded at each stage of study selection. In terms of contributions, this review provides a series of practical recommendations for m-health intervention development.

9.3.2. Descriptive or Mapping Reviews

The primary goal of a descriptive review is to determine the extent to which a body of knowledge in a particular research topic reveals any interpretable pattern or trend with respect to pre-existing propositions, theories, methodologies or findings ( King & He, 2005 ; Paré et al., 2015 ). In contrast with narrative reviews, descriptive reviews follow a systematic and transparent procedure, including searching, screening and classifying studies ( Petersen, Vakkalanka, & Kuzniarz, 2015 ). Indeed, structured search methods are used to form a representative sample of a larger group of published works ( Paré et al., 2015 ). Further, authors of descriptive reviews extract from each study certain characteristics of interest, such as publication year, research methods, data collection techniques, and direction or strength of research outcomes (e.g., positive, negative, or non-significant) in the form of frequency analysis to produce quantitative results ( Sylvester et al., 2013 ). In essence, each study included in a descriptive review is treated as the unit of analysis and the published literature as a whole provides a database from which the authors attempt to identify any interpretable trends or draw overall conclusions about the merits of existing conceptualizations, propositions, methods or findings ( Paré et al., 2015 ). In doing so, a descriptive review may claim that its findings represent the state of the art in a particular domain ( King & He, 2005 ).

In the fields of health sciences and medical informatics, reviews that focus on examining the range, nature and evolution of a topic area are described by Anderson, Allen, Peckham, and Goodwin (2008) as mapping reviews . Like descriptive reviews, the research questions are generic and usually relate to publication patterns and trends. There is no preconceived plan to systematically review all of the literature although this can be done. Instead, researchers often present studies that are representative of most works published in a particular area and they consider a specific time frame to be mapped.

An example of this approach in the eHealth domain is offered by DeShazo, Lavallie, and Wolf (2009). The purpose of this descriptive or mapping review was to characterize publication trends in the medical informatics literature over a 20-year period (1987 to 2006). To achieve this ambitious objective, the authors performed a bibliometric analysis of medical informatics citations indexed in medline using publication trends, journal frequencies, impact factors, Medical Subject Headings (MeSH) term frequencies, and characteristics of citations. Findings revealed that there were over 77,000 medical informatics articles published during the covered period in numerous journals and that the average annual growth rate was 12%. The MeSH term analysis also suggested a strong interdisciplinary trend. Finally, average impact scores increased over time with two notable growth periods. Overall, patterns in research outputs that seem to characterize the historic trends and current components of the field of medical informatics suggest it may be a maturing discipline (DeShazo et al., 2009).

9.3.3. Scoping Reviews

Scoping reviews attempt to provide an initial indication of the potential size and nature of the extant literature on an emergent topic (Arksey & O’Malley, 2005; Daudt, van Mossel, & Scott, 2013 ; Levac, Colquhoun, & O’Brien, 2010). A scoping review may be conducted to examine the extent, range and nature of research activities in a particular area, determine the value of undertaking a full systematic review (discussed next), or identify research gaps in the extant literature ( Paré et al., 2015 ). In line with their main objective, scoping reviews usually conclude with the presentation of a detailed research agenda for future works along with potential implications for both practice and research.

Unlike narrative and descriptive reviews, the whole point of scoping the field is to be as comprehensive as possible, including grey literature (Arksey & O’Malley, 2005). Inclusion and exclusion criteria must be established to help researchers eliminate studies that are not aligned with the research questions. It is also recommended that at least two independent coders review abstracts yielded from the search strategy and then the full articles for study selection ( Daudt et al., 2013 ). The synthesized evidence from content or thematic analysis is relatively easy to present in tabular form (Arksey & O’Malley, 2005; Thomas & Harden, 2008 ).

One of the most highly cited scoping reviews in the eHealth domain was published by Archer, Fevrier-Thomas, Lokker, McKibbon, and Straus (2011) . These authors reviewed the existing literature on personal health record ( phr ) systems including design, functionality, implementation, applications, outcomes, and benefits. Seven databases were searched from 1985 to March 2010. Several search terms relating to phr s were used during this process. Two authors independently screened titles and abstracts to determine inclusion status. A second screen of full-text articles, again by two independent members of the research team, ensured that the studies described phr s. All in all, 130 articles met the criteria and their data were extracted manually into a database. The authors concluded that although there is a large amount of survey, observational, cohort/panel, and anecdotal evidence of phr benefits and satisfaction for patients, more research is needed to evaluate the results of phr implementations. Their in-depth analysis of the literature signalled that there is little solid evidence from randomized controlled trials or other studies through the use of phr s. Hence, they suggested that more research is needed that addresses the current lack of understanding of optimal functionality and usability of these systems, and how they can play a beneficial role in supporting patient self-management ( Archer et al., 2011 ).

9.3.4. Forms of Aggregative Reviews

Healthcare providers, practitioners, and policy-makers are nowadays overwhelmed with large volumes of information, including research-based evidence from numerous clinical trials and evaluation studies, assessing the effectiveness of health information technologies and interventions ( Ammenwerth & de Keizer, 2004 ; Deshazo et al., 2009 ). It is unrealistic to expect that all these disparate actors will have the time, skills, and necessary resources to identify the available evidence in the area of their expertise and consider it when making decisions. Systematic reviews that involve the rigorous application of scientific strategies aimed at limiting subjectivity and bias (i.e., systematic and random errors) can respond to this challenge.

Systematic reviews attempt to aggregate, appraise, and synthesize in a single source all empirical evidence that meet a set of previously specified eligibility criteria in order to answer a clearly formulated and often narrow research question on a particular topic of interest to support evidence-based practice ( Liberati et al., 2009 ). They adhere closely to explicit scientific principles ( Liberati et al., 2009 ) and rigorous methodological guidelines (Higgins & Green, 2008) aimed at reducing random and systematic errors that can lead to deviations from the truth in results or inferences. The use of explicit methods allows systematic reviews to aggregate a large body of research evidence, assess whether effects or relationships are in the same direction and of the same general magnitude, explain possible inconsistencies between study results, and determine the strength of the overall evidence for every outcome of interest based on the quality of included studies and the general consistency among them ( Cook, Mulrow, & Haynes, 1997 ). The main procedures of a systematic review involve:

Formulating a review question and developing a search strategy based on explicit inclusion criteria for the identification of eligible studies (usually described in the context of a detailed review protocol).
Searching for eligible studies using multiple databases and information sources, including grey literature sources, without any language restrictions.
Selecting studies, extracting data, and assessing risk of bias in a duplicate manner using two independent reviewers to avoid random or systematic errors in the process.
Analyzing data using quantitative or qualitative methods.
Presenting results in summary of findings tables.
Interpreting results and drawing conclusions.

Many systematic reviews, but not all, use statistical methods to combine the results of independent studies into a single quantitative estimate or summary effect size. Known as meta-analyses , these reviews use specific data extraction and statistical techniques (e.g., network, frequentist, or Bayesian meta-analyses) to calculate from each study by outcome of interest an effect size along with a confidence interval that reflects the degree of uncertainty behind the point estimate of effect ( Borenstein, Hedges, Higgins, & Rothstein, 2009 ; Deeks, Higgins, & Altman, 2008 ). Subsequently, they use fixed or random-effects analysis models to combine the results of the included studies, assess statistical heterogeneity, and calculate a weighted average of the effect estimates from the different studies, taking into account their sample sizes. The summary effect size is a value that reflects the average magnitude of the intervention effect for a particular outcome of interest or, more generally, the strength of a relationship between two variables across all studies included in the systematic review. By statistically combining data from multiple studies, meta-analyses can create more precise and reliable estimates of intervention effects than those derived from individual studies alone, when these are examined independently as discrete sources of information.

The review by Gurol-Urganci, de Jongh, Vodopivec-Jamsek, Atun, and Car (2013) on the effects of mobile phone messaging reminders for attendance at healthcare appointments is an illustrative example of a high-quality systematic review with meta-analysis. Missed appointments are a major cause of inefficiency in healthcare delivery with substantial monetary costs to health systems. These authors sought to assess whether mobile phone-based appointment reminders delivered through Short Message Service ( sms ) or Multimedia Messaging Service ( mms ) are effective in improving rates of patient attendance and reducing overall costs. To this end, they conducted a comprehensive search on multiple databases using highly sensitive search strategies without language or publication-type restrictions to identify all rct s that are eligible for inclusion. In order to minimize the risk of omitting eligible studies not captured by the original search, they supplemented all electronic searches with manual screening of trial registers and references contained in the included studies. Study selection, data extraction, and risk of bias assessments were performed independently by two coders using standardized methods to ensure consistency and to eliminate potential errors. Findings from eight rct s involving 6,615 participants were pooled into meta-analyses to calculate the magnitude of effects that mobile text message reminders have on the rate of attendance at healthcare appointments compared to no reminders and phone call reminders.

Meta-analyses are regarded as powerful tools for deriving meaningful conclusions. However, there are situations in which it is neither reasonable nor appropriate to pool studies together using meta-analytic methods simply because there is extensive clinical heterogeneity between the included studies or variation in measurement tools, comparisons, or outcomes of interest. In these cases, systematic reviews can use qualitative synthesis methods such as vote counting, content analysis, classification schemes and tabulations, as an alternative approach to narratively synthesize the results of the independent studies included in the review. This form of review is known as qualitative systematic review.

A rigorous example of one such review in the eHealth domain is presented by Mickan, Atherton, Roberts, Heneghan, and Tilson (2014) on the use of handheld computers by healthcare professionals and their impact on access to information and clinical decision-making. In line with the methodological guidelines for systematic reviews, these authors: (a) developed and registered with prospero ( www.crd.york.ac.uk/ prospero / ) an a priori review protocol; (b) conducted comprehensive searches for eligible studies using multiple databases and other supplementary strategies (e.g., forward searches); and (c) subsequently carried out study selection, data extraction, and risk of bias assessments in a duplicate manner to eliminate potential errors in the review process. Heterogeneity between the included studies in terms of reported outcomes and measures precluded the use of meta-analytic methods. To this end, the authors resorted to using narrative analysis and synthesis to describe the effectiveness of handheld computers on accessing information for clinical knowledge, adherence to safety and clinical quality guidelines, and diagnostic decision-making.

In recent years, the number of systematic reviews in the field of health informatics has increased considerably. Systematic reviews with discordant findings can cause great confusion and make it difficult for decision-makers to interpret the review-level evidence ( Moher, 2013 ). Therefore, there is a growing need for appraisal and synthesis of prior systematic reviews to ensure that decision-making is constantly informed by the best available accumulated evidence. Umbrella reviews , also known as overviews of systematic reviews, are tertiary types of evidence synthesis that aim to accomplish this; that is, they aim to compare and contrast findings from multiple systematic reviews and meta-analyses ( Becker & Oxman, 2008 ). Umbrella reviews generally adhere to the same principles and rigorous methodological guidelines used in systematic reviews. However, the unit of analysis in umbrella reviews is the systematic review rather than the primary study ( Becker & Oxman, 2008 ). Unlike systematic reviews that have a narrow focus of inquiry, umbrella reviews focus on broader research topics for which there are several potential interventions ( Smith, Devane, Begley, & Clarke, 2011 ). A recent umbrella review on the effects of home telemonitoring interventions for patients with heart failure critically appraised, compared, and synthesized evidence from 15 systematic reviews to investigate which types of home telemonitoring technologies and forms of interventions are more effective in reducing mortality and hospital admissions ( Kitsiou, Paré, & Jaana, 2015 ).

9.3.5. Realist Reviews

Realist reviews are theory-driven interpretative reviews developed to inform, enhance, or supplement conventional systematic reviews by making sense of heterogeneous evidence about complex interventions applied in diverse contexts in a way that informs policy decision-making ( Greenhalgh, Wong, Westhorp, & Pawson, 2011 ). They originated from criticisms of positivist systematic reviews which centre on their “simplistic” underlying assumptions ( Oates, 2011 ). As explained above, systematic reviews seek to identify causation. Such logic is appropriate for fields like medicine and education where findings of randomized controlled trials can be aggregated to see whether a new treatment or intervention does improve outcomes. However, many argue that it is not possible to establish such direct causal links between interventions and outcomes in fields such as social policy, management, and information systems where for any intervention there is unlikely to be a regular or consistent outcome ( Oates, 2011 ; Pawson, 2006 ; Rousseau, Manning, & Denyer, 2008 ).

To circumvent these limitations, Pawson, Greenhalgh, Harvey, and Walshe (2005) have proposed a new approach for synthesizing knowledge that seeks to unpack the mechanism of how “complex interventions” work in particular contexts. The basic research question — what works? — which is usually associated with systematic reviews changes to: what is it about this intervention that works, for whom, in what circumstances, in what respects and why? Realist reviews have no particular preference for either quantitative or qualitative evidence. As a theory-building approach, a realist review usually starts by articulating likely underlying mechanisms and then scrutinizes available evidence to find out whether and where these mechanisms are applicable ( Shepperd et al., 2009 ). Primary studies found in the extant literature are viewed as case studies which can test and modify the initial theories ( Rousseau et al., 2008 ).

The main objective pursued in the realist review conducted by Otte-Trojel, de Bont, Rundall, and van de Klundert (2014) was to examine how patient portals contribute to health service delivery and patient outcomes. The specific goals were to investigate how outcomes are produced and, most importantly, how variations in outcomes can be explained. The research team started with an exploratory review of background documents and research studies to identify ways in which patient portals may contribute to health service delivery and patient outcomes. The authors identified six main ways which represent “educated guesses” to be tested against the data in the evaluation studies. These studies were identified through a formal and systematic search in four databases between 2003 and 2013. Two members of the research team selected the articles using a pre-established list of inclusion and exclusion criteria and following a two-step procedure. The authors then extracted data from the selected articles and created several tables, one for each outcome category. They organized information to bring forward those mechanisms where patient portals contribute to outcomes and the variation in outcomes across different contexts.

9.3.6. Critical Reviews

Lastly, critical reviews aim to provide a critical evaluation and interpretive analysis of existing literature on a particular topic of interest to reveal strengths, weaknesses, contradictions, controversies, inconsistencies, and/or other important issues with respect to theories, hypotheses, research methods or results ( Baumeister & Leary, 1997 ; Kirkevold, 1997 ). Unlike other review types, critical reviews attempt to take a reflective account of the research that has been done in a particular area of interest, and assess its credibility by using appraisal instruments or critical interpretive methods. In this way, critical reviews attempt to constructively inform other scholars about the weaknesses of prior research and strengthen knowledge development by giving focus and direction to studies for further improvement ( Kirkevold, 1997 ).

Kitsiou, Paré, and Jaana (2013) provide an example of a critical review that assessed the methodological quality of prior systematic reviews of home telemonitoring studies for chronic patients. The authors conducted a comprehensive search on multiple databases to identify eligible reviews and subsequently used a validated instrument to conduct an in-depth quality appraisal. Results indicate that the majority of systematic reviews in this particular area suffer from important methodological flaws and biases that impair their internal validity and limit their usefulness for clinical and decision-making purposes. To this end, they provide a number of recommendations to strengthen knowledge development towards improving the design and execution of future reviews on home telemonitoring.

9.4. Summary

Table 9.1 outlines the main types of literature reviews that were described in the previous sub-sections and summarizes the main characteristics that distinguish one review type from another. It also includes key references to methodological guidelines and useful sources that can be used by eHealth scholars and researchers for planning and developing reviews.

Typology of Literature Reviews (adapted from Paré et al., 2015).

As shown in Table 9.1 , each review type addresses different kinds of research questions or objectives, which subsequently define and dictate the methods and approaches that need to be used to achieve the overarching goal(s) of the review. For example, in the case of narrative reviews, there is greater flexibility in searching and synthesizing articles ( Green et al., 2006 ). Researchers are often relatively free to use a diversity of approaches to search, identify, and select relevant scientific articles, describe their operational characteristics, present how the individual studies fit together, and formulate conclusions. On the other hand, systematic reviews are characterized by their high level of systematicity, rigour, and use of explicit methods, based on an “a priori” review plan that aims to minimize bias in the analysis and synthesis process (Higgins & Green, 2008). Some reviews are exploratory in nature (e.g., scoping/mapping reviews), whereas others may be conducted to discover patterns (e.g., descriptive reviews) or involve a synthesis approach that may include the critical analysis of prior research ( Paré et al., 2015 ). Hence, in order to select the most appropriate type of review, it is critical to know before embarking on a review project, why the research synthesis is conducted and what type of methods are best aligned with the pursued goals.

9.5. Concluding Remarks

In light of the increased use of evidence-based practice and research generating stronger evidence ( Grady et al., 2011 ; Lyden et al., 2013 ), review articles have become essential tools for summarizing, synthesizing, integrating or critically appraising prior knowledge in the eHealth field. As mentioned earlier, when rigorously conducted review articles represent powerful information sources for eHealth scholars and practitioners looking for state-of-the-art evidence. The typology of literature reviews we used herein will allow eHealth researchers, graduate students and practitioners to gain a better understanding of the similarities and differences between review types.

We must stress that this classification scheme does not privilege any specific type of review as being of higher quality than another ( Paré et al., 2015 ). As explained above, each type of review has its own strengths and limitations. Having said that, we realize that the methodological rigour of any review — be it qualitative, quantitative or mixed — is a critical aspect that should be considered seriously by prospective authors. In the present context, the notion of rigour refers to the reliability and validity of the review process described in section 9.2. For one thing, reliability is related to the reproducibility of the review process and steps, which is facilitated by a comprehensive documentation of the literature search process, extraction, coding and analysis performed in the review. Whether the search is comprehensive or not, whether it involves a methodical approach for data extraction and synthesis or not, it is important that the review documents in an explicit and transparent manner the steps and approach that were used in the process of its development. Next, validity characterizes the degree to which the review process was conducted appropriately. It goes beyond documentation and reflects decisions related to the selection of the sources, the search terms used, the period of time covered, the articles selected in the search, and the application of backward and forward searches ( vom Brocke et al., 2009 ). In short, the rigour of any review article is reflected by the explicitness of its methods (i.e., transparency) and the soundness of the approach used. We refer those interested in the concepts of rigour and quality to the work of Templier and Paré (2015) which offers a detailed set of methodological guidelines for conducting and evaluating various types of review articles.

To conclude, our main objective in this chapter was to demystify the various types of literature reviews that are central to the continuous development of the eHealth field. It is our hope that our descriptive account will serve as a valuable source for those conducting, evaluating or using reviews in this important and growing domain.

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Published: 18 April 2024

Continuous palliative sedation until death: a qualitative study of palliative care clinicians’ experiences

Alexandra Guité-Verret 1 , 2 ,
Jessica Boivin 2 , 3 , 4 ,
Andrew M. R. Hanna 5 ,
James Downar 5 , 6 ,
Shirley H. Bush 5 , 6 , 7 ,
Isabelle Marcoux 2 , 8 ,
Diane Guay 2 , 9 ,
Diane Tapp 2 , 4 , 10 ,
Julie Lapenskie 5 , 7 &
Bruno Gagnon 2 , 4 , 5 , 11

BMC Palliative Care volume 23 , Article number: 104 ( 2024 ) Cite this article

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The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation.

This study aims to gain a better understanding of palliative care clinicians’ experiences with continuous palliative sedation.

We conducted a qualitative study based on focus group discussions.

Setting/participants

We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized.

An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death.

Conclusions

Interaction with the patient’s family, uncertainty about the patient’s prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

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Focused on accompanying dying individuals and their families, palliative care aims to relieve the suffering of patients at a physical, psychological, social, and existential level. When patients continue to experience severe uncontrollable symptoms despite optimal palliative care, continuous sedation, i.e., the reduction of the patient’s consciousness through sedatives until death, becomes a last-resort option [ 1 ]. Important discrepancies in practicing continuous sedation are reported in the literature, leading to a varying prevalence worldwide and a lack of a consensus on its definition [ 1 , 2 , 3 ]. Validated instruments exist for assessing sedation effects in palliative care, but recent systematic reviews highlight the need for clearer guidelines on identifying patients who may benefit from continuous sedation [ 4 , 5 , 6 ]. In addition, guideline recommendations are not always aligned with the reality of palliative care practice. [ 1 , 7 , 8 ] This dissonance is particularly evident in home care settings, where the applicability of guidelines is called into question. [ 9 , 10 ] It is crucial to explicitly define and critically examine palliative sedation, including its potential risks and ethical considerations, to ensure the quality of palliative care [ 11 ].

The most common indications for continuous sedation are agitated delirium, pain and dyspnea, [ 4 , 12 , 13 ] while its use for existential suffering is controversial [ 14 , 15 , 16 , 17 ]. The indications for continuous sedation are linked to clinicians’ intention to offer a “good” death for the patient and their family [ 18 , 19 , 20 , 21 , 22 ]. Palliative care clinicians also encounter challenges in providing quality sedation, including fear that continuous sedation hastens death, conflicting wishes between patients and families, and disagreements within care teams [ 13 , 23 , 24 , 25 ].

Another aspect that arises from the literature is the evolving nature of continuous sedation in light of the legalization of assisted death, also known as “medical assistance in dying” in Canada. In Western Europe and North America, assisted death has impacted continuous sedation practice, particularly regarding patients’ requests, clinicians’ intentions, and decision-making [ 26 ]. Patients and families tend to be more familiar with assisted death than continuous sedation, [ 26 , 27 ] reflecting the limited public understanding of palliative care [ 28 , 29 , 30 ].

The aforementioned are primarily based on literature reviews and studies conducted in the past decade. There is a need for new empirical data that can provide insights into the quality of palliative sedation from the perspective of palliative care clinicians [ 4 ]. It is important to study what they consider to be the recent challenges they face in their practice.

The aim of this study was (1) to describe the experiences of clinicians from various palliative care settings in using continuous sedation, and (2) to explore how assisted death influences palliative sedation practices. This study is part of a wider research project aimed at developing a palliative care educational module for healthcare professionals.

Methodological approach and position

This qualitative study followed the approach and guidelines of Interpretative Phenomenological Analysis [ 31 ], with theoretical underpinnings from phenomenology and hermeneutics. Interpretative Phenomenological Analysis aims to interpret participants’ personal experiences. [ 31 , 32 ] It is based on a constructivist methodological position [ 33 ]. This position shapes our ontological and epistemological stance, assuming that reality is constructed by the context, including participants’ lived experiences, the social environment, and the interaction between participants and researchers [ 33 ]. We chose Interpretative Phenomenological Analysis for our research because it enabled us to understand the meaning of palliative care clinicians’ work and their ways of caring according to current practices and social context.

To ensure rigor of this study, we adhered to Tracy’s quality criteria in qualitative research [ 34 ] (see Table 1 ).

Participants and recruitment

Participants comprised 28 palliative care clinicians, including 15 nurses, 12 physicians, and 1 end-of-life doula, working in various care settings across Canada (see Table 2 ). We recruited participants via four palliative care organizations and snowball sampling and contacted them by e-mail. Eligibility criteria were: (a) be a healthcare professional; (b) provide continuous palliative sedation or have been involved in the care of at least one adult patient who received continuous palliative sedation when death was imminent; (c) work in a palliative care setting in Canada. No exclusion criteria were identified. In line with qualitative and phenomenological research recommendations [ 31 ], we recruited a small sample to describe clinicians’ lived experience in their specific care settings. We aimed for a total of 25 to 30 participants, forming four to six focus groups of four to eight individuals each. Recruitment ceased when the predetermined number of participants was reached.

This study was approved by the Research Ethics Committee of Centre Hospitalier Universitaire de Québec-Université Laval, where the study was conducted (no. 2023–6462, approved on July 9, 2022). All study participants provided written informed consent for study participation, data analysis, and publication.

Data collection

Participants were invited to partake in one focus group to discuss their experiences of continuous palliative sedation. A focus group design was used to explore people’s knowledge and experiences, as it creates a space to reflect and share multiple views [ 35 ]. Group interactions are an integral part of this method, as they facilitate participants in clarifying their perceptions and understanding of the topic. [ 35 , 36 ] A semi-structured interview guide was developed for this study by our research team for use in the focus groups.

Six semi-structured qualitative focus groups were conducted virtually using an online platform from October 2022 to March 2023. Each participant took part in only one of the six focus groups. Each focus group was conducted in either English ( n = 5) or French ( n = 1), by grouping participants according to their language. Focus groups consisted of 4 to 8 participants, with discussions lasting from 68 to 124 min. The interviewer started with the focus group with the following statement so that participants have a common definition to discuss: “We are referring only to continuous palliative sedation when death is imminent. Intermittent sedation and withdrawal or withholding or life-sustaining treatments are not intended topics of discussion for our focus group”. Through a series of open-ended questions, the interviewer elicited information on how the participants define continuous palliative sedation, their experiences, and any impact of assisted death and the COVID-19 pandemic on their practice (see Table 3 ). Focus groups were video recorded and transcribed verbatim.

Data analysis

Focus groups data analysis was conducted using Interpretative Phenomenological Analysis methodology, according to the following steps: (1) data immersion by reading the first case (i.e., the first focus group); (2) developing emergent themes and associate them to participants’ quotes; (3) searching for connections across the emergent themes; (4) repeating steps 1 to 3 with each case; (5) looking for patterns across cases; (6) presenting a general structure of meaning [ 31 ]. This inductive method allowed the researchers to go beyond the initial themes and uncover the latent meaning, enabling an interpretative understanding of the data [ 37 ].

Participants shared a common understanding of continuous sedation, despite variations in terminology, attitudes, and practices. Continuous sedation was described as: (a) a last resort intervention for patients whose symptoms can no longer be controlled despite trying all available palliative therapy options (see Tables 4 and 5 ); (b) an intervention provided when the clinical prognosis is less than two weeks; (c) an intervention that focuses on identifying and alleviating refractory and intolerable symptoms to provide comfort to the patient, their family, and the multidisciplinary team; (d) an intervention that induces unconsciousness in the patient until death; (e) a care that aims not to hasten death, but acknowledges the possibility; (f) an intervention that aims to achieve a good death, as perceived by patient, family, and clinicians.

Through analysis, six themes emerged, capturing the meaning of continuous sedation for the participants: (1) responding to suffering; (2) grappling with uncertainty; (3) adapting care to ensure ongoing quality; (4) grounding clinical practice in ethics; (5) combining medical, relational, and reflexive abilities; (6) offering an alternative to assisted dying. These themes are presented below with supporting participant quotes.

Responding to suffering

Continuous sedation addresses the suffering of the patient, the family and, to a certain extent, the palliative care team. Participants primarily perceive continuous sedation as a means to ease the suffering of both the patient and their family, who form a unit of care. The practice surrounding the use of continuous sedation thus involves the observation, the recognition, and the assessment of the experiences of patients and their families:

That’s the big question in palliative care: Whose suffering are we treating? The patient or the family? When we decide to treat death rattle, we don’t treat it for the patients, we treat it for the family. In palliative care, we also see that the interest of the patient often passes through the interest of the family and that it is difficult to separate them completely. Palliative sedation must be seen that way. The quality of care we offer to one is inseparable from the quality of care we offer to the other. (P8, physician)

Alleviating the patient’s suffering can help ease the family’s distress. Families often take the initiative to request continuous sedation when they perceive the patient’s suffering as unbearable. Conversely, they sometimes postpone sedation to ensure the patient remains conscious. Therefore, the family’s experience and consent is at the center of clinicians’ evaluation of suffering. Many participants shared how difficult it can be to challenge the family’s perceptions of the patient’s condition and needs, primarily due to their acknowledgment that the family’s knowledge and experience are legitimate:

I’m going to be humble and say that maybe five minutes before I walked into the room, the patient was agitated, and then he calmed down all of a sudden. The family is going to report that to me and then maybe I won’t have seen it, maybe the nurse won’t have seen it and I’m going to have to believe the family and I’m going to adjust the medication because of that. (P6, physician)

Participants described their exposure to human suffering on a daily basis. This affects them and contributes to their own suffering. Introducing continuous sedation into the patient’s care trajectory offers the possibility of a death free from suffering and therefore is a source of comfort:

There’s a great sense of relief. I don’t know if the right word is satisfaction… It’s hard to watch somebody suffer. To be short of breath, be in pain, to be agitated. And continuous palliative sedation is a nice way to go. It’s a good death. (P3, nurse)

Participants evaluated the quality of continuous sedation in terms of the quality of their response to the suffering of the patient, the family, and the care team:

What would I describe as a good death? Families are all comfortable with the decision. The medical resident is comfortable with the decision. The staff are competent. The symptoms are alleviated fairly quickly, comfortably. Everybody spends quality time together. We have a good debriefing. When death does occur, everybody, you know, they’re sad but they’re happy because it was a peaceful death. Versus it was hard to get the symptoms. We tried so many different interventions to alleviate all the different symptoms the patient was experiencing, and it was really rough getting the sedation going. And they suffered, and there was a lot of screaming. It was upsetting other patients because they were in so much agony. It distressed the staff, it distressed everybody. (P13, physician)

Nevertheless, all participants placed the patient at the center of their concerns and established a hierarchy:

Primarily, relief of the patient’s suffering. And secondarily, relief of the family’s and team’s suffering. (P24, nurse)

Grappling with uncertainty

For all participants, a prognosis of two weeks or less plays a central role in the decision-making process for continuous sedation. This timeframe not only defines the intent of care but also shapes how palliative sedation is explained to patients and families. However, participants expressed an important level of uncertainty regarding prognosis, highlighting the inherent unpredictability of death and the individualized nature of each case:

Usually, I find I’m pretty good at prognostication if it’s kind of within hours, for sure. Within days, you know, it’s kind of hit or miss sometimes, depending on the situation. (P9, physician)

Clinicians’ uncertainty about prognosis manifested as a form of recognition of their professional limitations. However, this uncertainty did not undermine their confidence in their practice. They maintained a strong sense of obligation based on intention – to alleviate suffering without hastening death – rather than focusing on the potential consequences of their actions:

I like the idea that you kind of convince yourself that the initiation of palliative sedation is not going to hasten things for this person that you’ve started it for irretractable symptoms. (P11, physician) I think within our group, we all have different comfort levels with palliative sedation. We all say the same thing, but it means a little different things to each of us. (P19, nurse)

Clinicians recognized the importance of making an accurate prognosis as a crucial aspect of providing quality continuous sedation, but errors in timing, whether administering continuous sedation too early or too late, can result in a sense of professional and, to some extent, personal failure:

Statistically, we’ll never get it right. Two weeks of life is still legitimate, but a month… If it becomes very long, it’s very exhausting for families and it’s very difficult in terms of philosophy and explaining what’s going on. (P5, nurse)

Adapting care to ensure its ongoing quality

Participants perceived continuous sedation as more of a process than a single act. They emphasized the need to constantly adapt care to the situation to ensure its ongoing quality. If participants worked with protocols, they expressed the importance of flexibility in order to accommodate the needs of patients and families, and their own comfort zones:

It’s the art and science of medicine, right? You have to use your clinical judgment, but every individual is unique. You have to modify things based on your good assessments, your gut feeling, your experience. You talk to your team members. (P13, physician) I use palliative sedation guidelines, just as a matter of course. But often, palliative sedation may be something that I see on the horizon, depending on my history with the patient. Things that I’ve seen, past history. (P21, nurse)

The major impact of the COVID-19 pandemic was clinicians’ inability to properly adapt their practice to the patient-family unit. Due to visitation restrictions, family members were either not present, which undermined clinicians’ ability to respond effectively to patients’ suffering and hindered access to continuous sedation, often initiated by the family:

During COVID-19, probably the biggest challenge was associated with patients and families being physically separated. If a patient was incapable, the family members couldn’t see their loved one to participate in discussions around sedation. So, that became a major barrier to patients who had refractory delirium or respiratory failure or pain being able to access continuous sedation. (P2, physician)

Participants working in home care settings highlighted the need for additional adaptation on the part of families who are involved in sedation at home. The challenge for these families is to adjust the patient’s medication according to clinicians’ instructions:

What we’ve done is maybe put in a PCA [patient-controlled analgesia] pump so the family can readjust the dose as we go, on the hours that there’s maybe no nurse available. So, we’re looking into little projects like that to try to help facilitate things for families. And so that we don’t end up waiting too long to readjust the medication dose. It’s always the continuous conversation that we have with families. (P20, physician)

Grounding clinical practice in ethics

Participants understood continuous sedation as a care based on ethical thinking and communication. They recounted being confronted with ethical dilemmas, knowing their decisions are fraught with consequences (e.g., causing suffering, modifying life span):

Family members have distress of their own, and it’s very understandable. But as a clinician, there’s always this internal struggle. Is the sedation too soon? Does the family understand what this means? Have I explained it in a way that they understand? How much is too much? How little is too little? Am I prolonging suffering? Have I done enough to get to the point where this is a reasonable intervention? This is the stuff that I think, as clinicians, we do lose sleep over, at times. (P21, nurse)

Communication emerged as an essential aspect of continuous sedation practice. While participants demonstrated respect for the experiences of others, they recognized that continuous sedation entails the confrontation of values, which can give rise to conflicts, misunderstandings, or discomfort:

Patient, family culture versus our own beliefs and our own ethics. It becomes almost a little dilemma at times. And we’ve had multiple arguments and issues about that. (P20, physician)

Conflicts stemming from divergent values and clinical judgments within multidisciplinary teams can also arise, potentially leading to a breakdown of trust among colleagues or within the care practice:

The nurses felt like they knew what was the right thing for the patient, but it wasn’t. Physically, it might’ve been the right thing for her, but from a family, emotional perspective. It was probably one of the most difficult situations I’ve been in. Not because of the patient and the family, but you know, that dynamic with my team, who would not listen to me. It didn’t matter what I said. Things really fell apart quite a bit then. (P19, nurse)

Most participants voiced ethical concerns regarding the use of continuous sedation for patients primarily suffering from existential distress:

We do have other patients who really are awake, alert, compos mentis, and just have tremendous existential suffering. The challenging thing in that scenario is that the degree of existential suffering does not always correlate with prognosis. (P2, physician) When it’s more kind of psychosocial or existential, then decision making can be a little bit more difficult. And perhaps more controversial. Although, I mean, suffering is suffering. Can you really say that physical suffering should take greater priority over psychosocial or existential? (P9, physician)

Combining medical, relational, and reflexive abilities

Participants seemed to experience continuous sedation as a combination of medical expertise (e.g., selecting medications, establishing prognosis, using tools and guidelines), relational tact (e.g., opening a dialogue, cultivating presence), and reflexive abilities (e.g., ethical questioning, confronting values):

Sometimes, we think we have to use all these fancy measures and we get these quantitative measures. And then you’re saying, you know, the qualitative. Like that, what did people say? What are the stories that they shared, good or bad? And you get that rich understanding of what happened. Much different than a numerical kind of a measurement. (P13, physician)

Combining medical, relational, and reflexive abilities is a way to provide good care that goes beyond medical sedation:

That’s our accompaniment, right? You can have very good sedation, but that will leave people with a somewhat traumatic grief because it is an end of life that was quite traumatic. This is the opposite purpose of continuous sedation, so there is work to be done. (P8, physician)

Isolation measures and visitor restrictions during COVID-19 pandemic had a greater impact on clinicians’ relational and reflexive abilities compared to their medical skills. The quality of continuous sedation was affected more than its quantity, as the clinical understanding became somewhat detached from the realms of affect and communication. This appeared to reduce the ethical and relational scope of continuous sedation during the pandemic:

It’s very hard when a family can’t see their loved one and know what’s going on, to have that kind of conversation with them over the phone. It’s really hard to have people who only know from an intellectual perspective what’s happening with their loved one to understand that maybe we’ve come to that point. (P19, nurse)

Offering an alternative to assisted death

The legalization of assisted death in Canada has changed the ecosystem of palliative care. It appears that clinicians and patients viewed continuous sedation as an alternative to assisted death. The majority of participants understood that continuous sedation was different from assisted death in terms of prognosis and intention (i.e., to respect the natural rhythm of dying). They reported having the additional responsibility to educate patients, families, and non-expert healthcare professionals about the distinction between continuous sedation and assisted death.

Other participants understood continuous sedation practice in continuity with assisted death, indicating that these interventions are not mutually exclusive. They believed that offering continuous sedation to certain patients is a suitable compromise that upholds the intention to relieve suffering:

Where I find that palliative sedation is most frequently used are patients who would consider medical assistance in dying, but are now probably too late to get the ball rolling for the application process. So, that’s an interesting middle ground I find for patients who have intractable symptoms, who have intolerable symptoms, and don’t want to be conscious anymore, or can’t be conscious anymore because they’re too agitated. We can sedate people up until their medical assistance in dying procedure. (P1, physician)

Participants’ perception of continuous sedation as an alternative to assisted death was part of a “culture of acceptance” of assisted death among patients, families, and healthcare professionals, reflecting a notable shift in medical and societal norms. However, a disparity arises between the intentions of clinicians practicing continuous sedation and the understanding of patients and families who do not necessarily differentiate between continuous sedation and assisted death:

With some patients, it’s really, “Well, so let me get this straight. As far as I’m concerned, both of them are the same. I go to sleep and I die in my sleep. Sedation, you could do it this afternoon, right? I want that one.” And these are for patients who have limited prognoses. So, I think the cultural acceptance, which in turn, influences patients but also our willingness to discuss it and our competency in discussing it. (P2, physician)

Overall, participants acknowledged a positive impact of the legalization of assisted death. The public debate surrounding it has increased awareness about the realities of end-of-life experiences and fostered conversations about death and palliative care, including continuous sedation:

I think that one of the pluses for palliative care that came out of medical assistance in dying is that we’re talking about palliative care more. All of the aspects of palliative care, so people can make a more informed decision. (P24, nurse)

Main findings

Our findings show that continuous sedation practice is centered around addressing and assessing the suffering experienced by patients, families, and clinicians. According to the idea that individual experiences are intertwined, two sources of distress justify continuous sedation: that of the patient, resulting from physical, psychological, and/or existential suffering, and that of the family and clinicians, resulting from witnessing the patient’s suffering. Participants perceive continuous sedation as a form of quality care when they are able to effectively respond to and alleviate suffering. This entails recognizing, understanding, adapting to, and mitigating the patient’s suffering. In line with previous research, this study shows that some clinicians prioritize the patient’s suffering as a critical factor, even above considerations of life expectancy alone [ 7 ].

Our findings highlight that the suffering of families and clinicians is not peripheral but rather central to continuous sedation practice. On one hand, the family can experience suffering as they witness their loved one’s suffering on a daily basis. Clinicians acknowledge this suffering and strive to alleviate it by providing sedation to the patient. On the other hand, clinicians themselves experience suffering due to their continuous exposure to suffering and death, as well as the challenges they face in aligning their care with their own values. [ 7 , 8 , 15 , 18 , 21 , 25 ] Thus, palliative care clinicians adopt strategies to mitigate workplace suffering and share the moral burden, such as supporting each other and deliberating [ 38 ]. This suggests that continuous sedation practice is undermined by inadequate care of the patient’s family and insufficient recognition of the emotional and moral experiences of staff members [ 11 , 39 ].

This dynamic understanding of suffering among palliative care clinicians is consistent with the abilities they wish to develop. Our study provides a description of continuous sedation practice as a combination of three abilities: medical expertise, relational tact, and reflexivity. It appears essential for clinicians to support objective monitoring tools with subjective observations and collective discussions [ 13 ]. Clinical evaluation should be supported by a process of exchanging, sharing, interpreting, and confronting perceptions. [ 17 , 40 , 41 ] Going beyond medical technique allows clinicians to provide holistic care and better adapt to complex symptoms and complex human components.

Findings also support the idea that palliative care clinicians encounter ethical concerns when practicing continuous sedation. [ 16 , 18 , 24 , 25 , 40 ] First, our results confirm that clinicians have difficulty making a prognosis although they know it is a selection criterion for continuous sedation [ 7 , 21 , 38 ]. Continuous sedation practice calls into question the death of patients as “natural” [ 42 ]. According to our study, palliative care clinicians experience the uncertainty related to prognosis as professional and personal limits to providing a good and natural death. However, they embrace uncertainty as part of their practice and can tolerate uncertainty by connecting with their primary intention and trusting the nature of their act as morally good. The uncertainty related to prognosis may even keep alive an ethical thinking about the use of continuous sedation, since it requires an acute awareness of the legal framework and a rigorous evaluation of patients and families.

Second, our results confirm that pain, delirium, and dyspnea are commonly accepted indications for continuous sedation, while existential suffering is more controversial [ 15 , 16 , 17 ]. Existential distress is perceived by clinicians as a symptom with different issues than pain or delirium, possibly because it is considered outside the medical field, requiring specific ethical, psychological, and spiritual assessments. [ 11 , 16 , 43 , 44 ] It is not clear for clinicians how to address existential suffering. This points to the need for closer collaboration with other professionals (e.g., psychologists) and improved training [ 4 , 15 ]. Empathy with the patient’ suffering or positive attitudes towards sedation may lead clinicians to treat existential suffering using continuous sedation despite the ethical issues it raises [ 7 , 23 , 43 ]. Therefore, continuous sedation practice could depend more on clinicians’ beliefs and tolerance regarding existential suffering than on proper knowledge or clear guidelines [ 14 ]. Continuous sedation, which aims to relieve the patient’s total pain [ 45 ], cannot be optimal if it does not reach beyond patients’ physical symptoms to address also existential issues [ 4 , 46 ].

In line with previous studies, we also found that many palliative care clinicians perceive the relationship between palliative sedation and assisted death as fluid or interchangeable. [ 26 , 27 , 43 , 44 , 47 ] Palliative sedation is shaped by patients’ desire to hasten death or explicit demands for assisted death, and clinicians themselves understand continuous sedation as an alternative to assisted death for people who are near to death but cannot consent or do not have access to it. The media coverage of assisted death may also result in increased opportunities for clinicians to engage in discussions about continuous sedation [ 48 ]. Far from decreasing, there has been a strong growth in palliative sedation in Canada following the legalization of assisted death [ 19 ].

Cultural interpretation of the findings

The technical, medical, relational, and moral dimensions of palliative sedation are linked to its institutional and cultural dimensions. Palliative care clinicians are aware of the context in which they work and make sure to keep in mind the social issues surrounding end-of-life care. Continuous sedation practice reflects factors outside the care setting such as cultural meaning-making around death and dying [ 49 , 50 , 51 ]. The way clinicians experience the use of continuous sedation and assisted death is an indication of the importance of achieving a “good death”, which has been characterized by the absence of suffering and agitation and the search for individual control [ 18 , 27 , 52 ]. It appears cultural constructions of “good dying” imbue the experiences of palliative care clinicians, and as a result, influence continuous sedation norms.

Strengths and limitations of the study

This study provides new phenomenological data on palliative care clinicians’ experience of continuous palliative sedation and enhances understanding of the interplay between continuous palliative sedation and assisted death. This may improve knowledge and clinical practice in the palliative care of patients with far advanced disease.

This study has limitations. The results cannot be generalized to all palliative care clinicians, or to countries where assisted death is not legal. Composed almost exclusively of nurses and physicians, our sample is also limited in terms of interdisciplinarity. In addition, as end-of-life practices are a source of public debate, the focus group topic was sensitive. The data collection could have led to a reluctance to share some experiences and values.

This study provides novel insights into continuous palliative sedation as a response to the suffering experienced by patients, families, and palliative care clinicians. Additionally, it highlights the central role of family and clinician suffering within the context of continuous palliative sedation practice, rather than considering it as peripheral. This study also enhances understanding of the interplay between continuous palliative sedation and assisted dying, describing how palliative care clinicians educate others about the differences between the two interventions, while also utilizing sedation as an alternative to assisted dying. In addition, this study indicates that palliative care physicians and nurses often struggle to explore, understand, and/or address existential suffering. Therefore, its treatment may depend more on clinicians’ beliefs and tolerance rather than on proper knowledge or guidelines. Its treatment may also depend on the lack of psychological and spiritual care providers in palliative care teams.

Data availability

Data generated during the current study are available from the corresponding author upon reasonable request.

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Acknowledgements

The authors thank Jaya Rastogi of the Bruyère Research Institute for assisting in data collection. The authors also thank Pan-Canadian Palliative Care Research Collaborative (PCPCRC), Réseau Québécois de Recherche en Soins Palliatifs et de Fin de Vie (RQSPAL), Pallium Canada, Canadian Society of Palliative Care Physicians (CSPCP), and Société Québécoise des Médecins de Soins Palliatifs (SQMDSP) for their support in recruiting palliative care clinicians across Canada. SHB receives an Academic Protected Time Award from the Department of Medicine, University of Ottawa, Ottawa, Canada. The authors also thank Anton Savin for his assistance with data entry and analysis of the sociodemographic table. This research was funded by a contribution from Health Canada, Health Care Policy and Strategies Program. The views expressed herein do not necessarily represent the views of Health Canada.

This research was funded by a contribution from Health Canada’s Health Care Policy and Strategies Program. The funder has no role in the design of the study and collection, analysis, interpretation of data, and in writing the manuscript.

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J.B. and A.M.R.H. designed the study, which was conceived by B.G. J.B. carried out the data collection. A.G.V. led the data analysis, with the contribution of J.B., and the writing of the manuscript. B.G. contributed to the creation of the interview guide, gave feedback on initial themes and reviewed the manuscript. J.B., A.M.R.H., J.D., S.H.B., I.M., D.G., D.T. and J.L. contributed to the interview guide and reviewed the manuscript.

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Guité-Verret, A., Boivin, J., Hanna, A.M.R. et al. Continuous palliative sedation until death: a qualitative study of palliative care clinicians’ experiences. BMC Palliat Care 23 , 104 (2024). https://doi.org/10.1186/s12904-024-01426-2

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Evidence-based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review

Kirsten A. Riggan ORCID: orcid.org/0000-0002-0127-9555 1 ,
Kelly E. Ormond ORCID: orcid.org/0000-0002-1033-0818 2 , 3 ,
Megan A. Allyse ORCID: orcid.org/0000-0001-6136-9256 1 , 4 &
Sharron Close ORCID: orcid.org/0000-0002-2117-2165 5

BMC Pediatrics volume 24 , Article number: 263 ( 2024 ) Cite this article

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The diagnosis of supernumerary X & Y chromosome variations has increased following the implementation of genetic testing in pediatric practice. Empirical evidence suggests that the delivery of the diagnosis has a lasting impact on how affected individuals and their parents perceive and adapt to the diagnosis. The purpose of this review is to synthesize the literature to obtain useful recommendations for delivering a pediatric diagnosis of a sex chromosome multisomy (SCM) based upon a growing body of quantitative and qualitative literature on patient experiences.

We conducted an integrative literature review using PubMed, Web of Science and CINAHL employing keywords “genetic diagnosis delivery,” “genetic diagnosis disclosure,” “sex chromosome aneuploidy,” “Klinefelter syndrome” or “”47, XXY,” “Jacob syndrome” or “47, XYY,” “Trisomy X,” “Triple X” or “47, XXX,” and “48 XXYY from January 1, 2000, to October 31, 2023.

Literature supports that patients and parents value the provision of up-to-date information and connection with supportive resources. Discussion of next steps of care, including relevant referrals, prevents perceptions of provider abandonment and commitment to ongoing support. Proactively addressing special concerns such as disclosing the diagnosis to their child, family, and community is also beneficial. Tables are provided for useful information resources, medical specialties that may be required to support patients, and common misconceptions that interfere with accurate information about the diagnosis.

Patient experiences suggest there should be heightened attention to diagnosis delivery, in reference to the broader ethical and social impacts of a SCM diagnosis. We present recommendations for optimal disclosure of a SCM diagnosis in early and late childhood, adolescence, and young adulthood.

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Introduction

Sex chromosome multisomies (SCM) are conditions characterized by one or more extra X or Y chromosomes. Collectively, they have a prevalence of approximately 1 in 500 [ 1 , 2 ]. Trisomy conditions, including Klinefelter syndrome (47, XXY), Jacob syndrome (47, XYY), and Trisomy X (47, XXX), are the most common, but tetrasomy or pentasomy conditions also occur (e.g., 48, XXYY) [ 3 , 4 ]. With the exception of tall stature, SCM does not typically present with dysmorphic physical features and phenotypes can encompass a range of physical, neurocognitive, psychological, learning, behavioral, and psychosocial symptoms, and even be undetected [ 5 , 6 , 7 , 8 , 9 , 10 , 11 ]. Intelligence of people with SCM is in the average to slightly lower-than-average range, although is slightly lower than in sibling controls [ 8 , 12 ]. It is beyond the scope of this article to comprehensively present the phenotype of each SCM, but many excellent clinical reviews are available [ 6 , 9 , 11 , 13 , 14 , 15 , 16 ]. The purpose of this paper is to synthesize current literature on diagnosis disclosure of SCM to parents and patients and to offer recommendations for pediatric providers to use when delivering this news.

Historically, pediatric patients with symptoms of uncertain etiology were referred to geneticists and genetic counselors for diagnostic testing and delivery of genetic diagnoses. Genetic testing is increasingly used as a tool in general pediatric clinical practice [ 17 , 18 ]. More providers, therefore, will be returning a diagnosis of SCM whether they have received special training in medical genetics or not. It is important for clinicians to be prepared to deliver a diagnosis and follow-up counseling in a sensitive and accurate manner. The genetics literature suggests that clinicians in pediatrics and family medicine exhibit varying degrees of comfort with delivering genetic diagnoses; many feel ill-equipped to present this sensitive information to parents and patients [ 17 , 18 ]. SCMs have been historically underdiagnosed; only ~ 10–30% of patients were diagnosed in their lifetime [ 19 ], typically following significant diagnostic delays. This, however, is changing as genetic testing has become more accessible and is increasingly ordered for symptoms of uncertain etiology and as parents advocate for genetic testing to provide concrete answers to their concerns [ 20 , 21 ]. Moreover, while the focus of this paper is on diagnoses that occur during childhood, the inclusion of sex chromosomes in noninvasive prenatal screening panels has also increased early detection of SCM [ 22 , 23 ].

Current literature suggests that the receipt of a genetic diagnosis is recognized as a ‘flashbulb memory,’ and is deeply embedded into the memories of parents and individuals [ 24 ]. Ensuring that this moment is as positive as possible is critical for post-diagnosis adaptation and resilience. Many parents have reported negative diagnostic experiences resulting in emotional distress and difficulty processing [ 25 , 26 , 27 ]. Poor experiences have ethical implications for the relationship between pediatricians and parents, including erosion of trust and engendering feelings of provider misunderstanding or even abandonment [ 26 ]. Parents who receive inaccurate information as part of the diagnosis delivery and/or minimal post-diagnosis support struggle with emotional and mental health concerns that impact their relationship with their child [ 26 , 27 ]. When the diagnosis of SCM occurs during childhood, diagnostic news is usually shared in one of three potential scenarios: following a pediatric work-up for developmental delay and/or behavioral issues, endocrinology issues related to puberty, and endocrinology issues related to reproductive health. Age at diagnosis also varies by scenario: in one survey, children with Klinefelter who presented with developmental concerns were diagnosed at an average age of 10 years of age (diagnostic delay of 4.8 years from the time of first concern to genetic diagnosis) vs. those with endocrine symptoms had an average age of 21 (diagnostic delay of 2.0 years from the time of first concern to genetic diagnosis) [ 28 ]. SCM may also be diagnosed as a secondary or incidental diagnosis in the absence of clinically detectable symptoms, and therefore be unexpected by parents and individuals. As such, there is a wide spectrum of developmental stages where patients may be diagnosed.

While many excellent review articles exist on topics SCM, none as yet have focused upon the process of delivering the diagnosis. As well, no specific protocols or guidelines on diagnosis delivery can be found among national societies including the National Society of Genetic Counselors, the American College of Medical Genetics or the National Association of X & Y Chromosome Variations (AXYS). We endeavored to address this gap by gathering evidence that would provide guidance on how to disclose the diagnosis of SCM to individuals or caregivers.

Prior to the introduction of pre-natal cell-free DNA testing in 2011, SCM were rarely diagnosed in childhood. Since the early 2000’s with growing availability and use of this testing and improved awareness of these aneuploidies, new diagnoses have climbed rapidly. Our review was designed to capture what is known about SCM diagnosis disclosure during this period. We chose to employ an integrative literature review method to provide a more comprehensive understanding of this particular healthcare problem [ 29 ] and to provide methodological structure using the recommendations of Whittemore & Knafl [ 30 ]. While a scoping review aims to map the literature to classify results, this review focuses on synthesis of results that can be applied in practice. Our review focused upon addressing the research question of what evidence exists to inform pediatric clinicians about disclosing and delivering the news that a child has a SCM. An initial search was done to extract key search terms. The search strategies used the following formula: genetic diagnosis disclosure OR genetic diagnosis delivery AND sex chromosome aneuploidy OR Klinefelter syndrome OR 47 XXY OR Jacob’s syndrome OR 47 XYY OR Trisomy X, OR Triple X, OR 47 XXX, OR XXYY. During October of 2023, the databases of PubMed, CINAHL and Web of Science searching the literature from January 1, 2000, to October 31, 2023. Selection of studies for this review were based on the inclusion criteria of relevance to disclosing a diagnosis in a child, adolescent, or young adult and family support post-diagnosis. Additionally, references within discovered articles were reviewed for comprehensiveness. Articles discussing a diagnosis of monosomy conditions (e.g., 45, XO) only were excluded from this review. The monosomy condition known as Turner Syndrome (45, XO) was excluded from this review due to distinct differences in syndrome characteristics compared to multisomies. While some features such as learning challenges overlap with multisomies, 45, XO is unique in its presentation and health risks. For specificity in this article, we use the term “sex chromosome multisomies” rather than “sex chromosome aneuploidy,” which includes monosomy conditions beyond the scope of this review.

This review was based on the inclusion criteria of relevance to disclosing a diagnosis in a child, adolescent, or young adult and family support post-diagnosis with regard to sex chromosome multisomies. While this review was integrative in method, we followed PRISMA-Scoping Review criteria as much as possible to assure rigor in our method [ 31 , 32 ]. Two reviewers (KR, SC) independently search the literature for title, abstract and full-text screening according to pre-defined limits and using key words. They each read and scored abstracts of articles according to inclusion criteria by labeling as either relevant or irrelevant to the research question. Full text articles were reviewed by KR and SC and consensus for inclusion were achieved through review with MA and KO. Decisions about selection of articles were achieved via bi-monthly team phone meetings from April of 2023-August of 2023. Articles for inclusion were reviewed and decisions were made in-tandem with any discrepancy in agreement achieved through synchronous discussion.

Data from the selected articles were entered into a chart to demonstrate relevant variables to extract.

Our search identified a total of 3,407 articles as potentially relevant from the databases previously described. After reviewing for relevancy by title, 89 were chosen to undergo abstract review. Of these, 75 articles underwent full-text review from which 12 were chosen as relevant for the chart as shown in Fig. 1 . Of the 12 that were chosen, 9 were conducted in the US, and 1 each from Australia, Italy and Canada. A descriptive summary of each study is shown in Table 1 . We reviewed concerns specific to pediatric populations and included factors that were relevant to delivering the diagnosis. Results from these 12 studies were used to create useful recommendations for clinicians to employ when disclosing the diagnosis and caring for patients with SCM. The results are organized under 6 main headings: Parent Informational Needs, Communication Strategies, Post-diagnosis Support and Adaptation, Timing of Diagnosis and Disclosing the Diagnosis to the Child and Community.

Flowchart of study selection

Parent informational needs

Results demonstrate that parents and individuals who receive news about the diagnosis of SCM desire accurate information about the conditions and how to manage healthcare and other concerns going forward. Their experiences were reflected in several studies where parents and individuals describe that information was not up to date and were misleading [ 25 , 26 , 33 , 34 ].

Communication strategies

Parents reported that they were informed by providers who did not have a background in genetics and were not prepared to counsel them about the condition or what to expect regarding health care needs [ 25 ]. They further expressed that when news was delivered, descriptions of the condition were negatively portrayed by them and that this experience that caused exacerbated stress and anxiety about their child [ 25 , 33 , 34 ].

Post-diagnosis support and adaptation

Parents and individual reported that after learning of the diagnosis, they lacked support for how to manage health care and non-medical symptoms related to potential learning challenges and developmental concerns [ 33 , 36 ]. They also expressed frustration that when non-medical issues arose during care that their concerns were frequently dismissed by providers [ 35 ].

Timing of diagnosis

Timing of diagnosis and initial counseling needs vary by circumstances regarding whether news is delivered as a pre-natal diagnosis during childhood, adolescence or adulthood. Parents who receive a pre-natal diagnosis reported experiencing depression, anxiety and less optimism than those who learned of the diagnosis after birth [ 25 ]. In a 2023 study, parents receiving the diagnosis after birth expressed relief when their concerns and the child’s symptoms were explained by the diagnosis of SCM [ 27 , 35 ]. Some variations in SCM are associated with reproductive health issues that require special attention and sensitivity about medical surveillance and available treatment options [ 38 ].

Disclosing the diagnosis to the child and community

Genetic diagnoses for SCM may carry some degree of social stigma for individuals and families, so the manner in which genetic information is disclosed must be handle with great sensitivity [ 33 ]. Decisions about when and how to disclose the diagnosis to the affected individual and others is highly personal involving special considerations about privacy and autonomy [ 41 ]. Decisions about when and how to disclose information to a child is necessarily dependent on a child’s cognitive, emotion and social development [ 38 , 40 ]. Parental surveys conducted between 2015 and 2022 suggest that children be informed during the peri-pubertal development when they are developmentally more capable of understanding how the genetic diagnosis may be affecting their health and development [ 38 , 39 , 40 ]. Healthcare providers need to be sensitive to consideration of parental autonomy in decisions about disclosure of diagnosis to their child and the child’s right know [ 41 ]. This review identified 12 papers focused on the topic of diagnosis disclosure in SCM. Evidence from these papers showed five main categories of consideration that clinicians may contemplate when preparing to deliver the diagnosis of the SCM to an individual or caregiver. Focusing on parental information needs, post-diagnostic support and adaptation, consideration of diagnostic timing in the individual’s development and how to assist in disclosing the diagnosis to a child and others provides a patient-centered frame of reference for discussing sensitive genetic information. Results from this review are intended to be combined with what is known about SCM to help prepare clinicians to educate patients and families about how the diagnosis may impact health and well-being.

Pediatric clinicians may feel ill-prepared to discuss health, development, and behavioral concerns of children presenting with SCM. Anticipatory guidance about a child’s developmental trajectory is also difficult; the physical and behavioral phenotype of SCM vary between multiploidy-type and within individuals with similar SCM types. Clinical guidance on optimal health surveillance for SCMs throughout childhood is available in the literature [ 6 , 9 , 11 , 13 , 14 , 15 ]. Several studies explored parents’ information needs at the time of diagnosis [ 14 , 25 , 26 , 33 ]. Families reported appreciation for receiving up-to-date informational weblinks and lay-person oriented educational materials as shown in Table 2 . Informative content from these types of resources includes medical, learning, and behavioral symptoms and needs at future life stages (e.g., late childhood, adolescence, young adult). Parents also reported appreciating candor and veracity from their physicians about what can and cannot be known about their child [ 42 ].

Ideally, parents expressed the need to be provided with information about their child’s specific SCM to help alleviate anxiety that may be generated from naïve Internet searches. Proactive referral to specialty care reassures parents that their child’s potential medical needs will be evaluated. Specialty care needs to be customized according to individuals’ SCM type and involve reciprocal communication among clinicians to coordinate care for best outcomes [ 15 , 43 ]. Medical specialties to consider in building a multidisciplinary care team can be found in Table 3 .

With regard to explanation of physical neurocognitive and behavioral traits, studies have shown that individuals and parents appreciate learning that “classic” phenotypes and descriptions of SCMs may be misleading as historically they were informed by more seriously affected individuals, with clinically diagnosed symptoms prompting karyotyping, and that they or their child will grow, develop and mature on their own trajectory. Predictions about future development vary widely [ 27 , 34 , 35 ].

As in other literature about sharing a new diagnosis, parents and individuals frequently cite the mode of delivery as having significant impact on clinical experience and resilience [ 26 , 34 ]. A recent study demonstrated that parents who discovered the diagnosis through the return of laboratory results or a brief phone call were often upset that the diagnosis was communicated in an impersonal or inconvenient setting (e.g., in a grocery store or business meeting) with limited opportunity for discussion and absorption of the information [ 26 ]. A preferred setting is in person, with both parents present if appropriate, in a private location, and with proactive conversations about the desirability of having the child present. Parents expressed a strong preference for these optimal settings, even if it meant a delay in the delivery of the diagnosis [ 26 , 34 ]. Clinical workflow and processes (e.g., automatic release of results to the electronic health record) may prevent ideal communication of the diagnosis. In these circumstances, it is important to consider that arranging for an in-person appointment would best be scheduled to discuss the diagnosis to determine next steps of care.

Our review suggests several strategies for pediatricians delivering a diagnosis of SCM. Current literature provides helpful guidance on delivering genetic diagnoses more broadly [ 44 , 45 , 46 , 47 ], and we recommend a strategy for the process of delivering an SCM diagnosis with helpful details that are informed by the SCM literature as shown in Table 4 [ 26 , 27 , 33 , 34 , 35 , 36 , 37 ]. Recommendations include providing a clear and brief definition of the diagnosis and exploring what parents and/or individuals already know and what their concerns are (e.g., “Can you tell me what you have heard/know about SCMs?). Many individuals and parents, particularly those where there may be suspicion of a SCM diagnosis or those who received a preliminary telephone call with diagnostic results, have already consulted the Internet and various social media sources. Non-evidence-informed sources often contain medicalized images designed to emphasize physical trait differences and uninformed lay opinions about medical management.

A summary of common misconceptions about SCMs concerning impact on intelligence, behavior, sexual orientation, gender identity, and reproductive health [ 8 , 16 , 44 , 48 , 49 , 50 , 51 , 52 , 53 ] is shown in Table 5 .

Providers with less familiarity with SCM can prepare themselves for this conversation by understanding the phenotypic spectrum of these conditions, as well as common misperceptions. It may be helpful to ask parents what kind of information they have encountered and when appropriate, provide them with counter examples from the medical and patient experience literature.

In articles by Jaramillo et al. (2019) and Richardson et al. (2021) parents were reported to speak positively about conversations that included contextual information about the condition—including the number of children living with the condition including that many individuals remain undiagnosed in their lifetime, the availability of other families of children with a diagnosis, and contacts for support organizations [ 26 , 34 ]. Parent participants stressed that the diagnosis should be presented as a positive development in their child’s medical journey and that having a diagnosis will improve clinical management and assist in gathering resources rather than as a negative event [ 25 ]. Parents also emphasized the need to avoid apologetic language and suggestions that the diagnosis may in any way limit future opportunities for the child. They also valued reassurance that the diagnosis itself would not influence their relationship with their child [ 27 ].

Extensive knowledge about genetics is not required to deliver the diagnosis but part of the informational process should include a warm hand off to medical genetics and genetic counseling. If specialty services are not available locally, research has shown that telehealth approaches show comparative effectiveness in genetic counseling [ 54 ]. During the process, providers should clarify that SCM are different from autosomal aneuploidy conditions (e.g., Trisomy 21) to minimize confusion about the potential prognosis. The use of colloquial terms such as ‘female’ or ‘male’ chromosomes in explanations of genetic etiology can also be confusing. It is preferable to use terms such as ‘extra x’ or ‘extra y’ when communicating the karyotype to prevent misunderstanding or attribution of their child’s gender and sexual identity to the aneuploidy. Terms such as ‘super female’ or ‘super male’ are also inaccurate and outmoded. While emphasized in the medical and lay literature, parents report that extensive discussion of potential infertility detracts from their immediate concerns about the health and social issues their child might encounter [ 27 ].

Another highly valued resource for parents is the provision of educational materials that provide social and emotional context in addition to describing the phenotype and symptoms. Provided materials should be reflective of the latest scholarship, easy to understand, and free of technical jargon, but this is an unmet need at present. Some patient-facing materials have been developed, especially for Klinefelter syndrome [ 55 , 56 ], but materials for less prevalent SCM conditions may be difficult to access, especially in languages other than English. Parents strongly desire a balanced presentation of both positive and negative aspects of the condition [ 26 ]. While the literature has historically been focused on symptom characterization, studies are beginning to highlight relative strengths of children and individuals with these conditions, including kindness, honesty, being eager to please, and love of learning [ 57 , 58 ], which can be contextualized in reference to the parent–child relationship.

Parents express a strong desire for partnership with clinicians on an actionable plan for clinical and social care moving forward [ 27 , 33 ]. In the pediatric context, a SCM diagnosis is delivered for a known child and, with some exceptions, is typically in response to observed symptoms or parent concerns. At this stage, parents’ primary concern is how to support their child and navigate the health and social impacts of the diagnosis. Parents find it most helpful when the clinician focuses the conversation on how to receive individualized help and support for their child. Discussion of concrete next steps, including specialty care and available resources for social and educational support are perceived to be the most helpful in addressing immediate concerns raised by the diagnosis [ 27 ].

Parents may express a wide spectrum of responses to the diagnosis, which often reflect their diagnostic journey. Some parents reported feelings of relief at learning of the diagnosis, especially if they experienced a lengthy diagnostic delay or if genetic testing was for differential diagnoses of more serious conditions [ 25 , 33 , 37 ]. They also expressed frustration if their child had not receive an earlier diagnosis, was misdiagnosed, and/or received ineffective treatments [ 25 ]. Some parents reported feeling overwhelmed and having difficulty processing news of the diagnosis. Parent referral for professional counseling may be beneficial to understand and work through the potential implications for their family dynamics and any complicated feelings that may arise from a genetic diagnosis in a child [ 27 , 34 ].

Connection with local or national support groups offers parents an established network of support, access to non-medical resources, and a place for additional context on parenting and day-to-day management. Organizations such as the Association for X and Y Chromosome Conditions (AXYS) and the XXYY Project support families diagnosed with SCM in the U.S. and internationally as shown in Table 2 . Private social media groups have also grown in popularity as a mechanism to connect parents with shared experiences, although these groups are subject to online group dynamics, including potential exclusion of parents who experience greater challenges or with more involved phenotypes, or pressure towards a ‘right’ way to parent a child with SCM. Both parents and individuals with SCM find it helpful to connect with other families farther along the same journey, see examples of adults with the same condition leading typical lives, and discuss strategies for daily life management [ 34 , 35 ].

Comprehensive medical care may be difficult to access post-diagnosis; there are only a handful of specialty SCM clinics in the U.S. [ 43 , 59 ]. Because of the lack of coordinated care for these conditions, parents are often placed in the position of becoming ‘experts’ about their child’s condition and symptoms, advocating for necessary referrals, managing communication between specialty providers, and educating providers on the condition and its sequelae [ 14 , 60 ]. Decisions about initiation of testosterone therapy and fertility preservation may also weigh on parents of children with Klinefelter’s syndrome, especially in the peri-pubertal period. Published clinical guidance recommends referral to endocrinology at first signs of puberty for this time-sensitive discussion, although there is variance among providers regarding optimal timing for fertility preservation [ 15 , 61 ].

Parents cited a particular need for help in attaining educational support. Learning disorders are common among children with SCM and may be one of the first ‘soft’ symptoms identified by parents or educators [ 27 , 58 ]. Parents stressed challenges over navigating special education services, including state-specific requirements for Individualized Education Plans (IEP) or 504 plans. Access to services often require a letter from a physician confirming the diagnosis, their eligibility for special education services under the categories of disability outlined in the federal Individuals with Disabilities Education Act (IDEA), and recommended accommodations.

Anticipating this need may relieve the advocacy burdens experienced by many parents [ 35 ]. Teachers and administrators may have limited understanding of the impact of the SCM on classroom behavior and learning; the importance of strong partnerships between parents and schools is also cited by parents as key to the thriving of their child in educational environments [ 27 , 35 , 60 ]. It may be useful to refer parents to the helpful recommendations for educators available in Thompson et al. [ 60 ].

It is common for SCM to be diagnosed following delayed or incomplete pubertal development or following an infertility work-up, although this is more typical of early to mid-adulthood. As adolescents and young adults (AYAs) begin to develop greater autonomy over their medical care, they may raise confidential concerns with pediatric providers, including indications for SCM related to sexual development and reproductive health concerns [ 62 , 63 ]. Respect for this autonomy must be balanced with their ability to understand and process medical information as well as the need for support following a genetic diagnosis. Emotional maturity, comprehension, and communication are impacted in SCM; reports in our review indicate that young adults felt blindsided by the diagnosis and struggled to comprehend its implications [ 26 , 34 ]. It is helpful to proactively engage AYA patients about whether they wish to have a parent or other support person present when the diagnosis is delivered.

Special sensitivity should be given towards the impact of the diagnosis on AYAs self-image and self-esteem. Individuals diagnosed prior to the millennium reported that objectification of genitalia, unnecessary genital exams, and remarks on sexuality were more common at that time. Those diagnosed more recently reported fewer problematic experiences, but mentioned that off-hand comments about infertility, genital size, or gender expression are deeply distressing and should not be made. These comments may be remembered for many years after diagnosis and may impact perceptions of self-worth or generate misperceptions about their sexuality and relationships [ 34 ]. A survey of AYAs with Klinefelter syndrome found that one-fifth of respondents expressed that differences in physical appearance, including small testes, gynecomastia, and lack of muscle mass and these were some of the most difficult aspects of living with the condition. Instances of bullying were also reported [ 64 ].

For AYAs, a diagnosis may bring clarity to prior learning or social struggles and diffuse feelings of failure, but it may also reinforce feelings of difference from peers [ 34 , 65 , 66 , 67 ]. Learning of a genetic diagnosis is often an identity-forming event; [ 65 , 66 ] some AYAs have noted difficulty developing trusting relationships with their providers and finding information on the lived experience of AYAs with SCM [ 67 ]. Adolescents and young adults may benefit from referrals to counseling or psychology given the direct implications on self-image, sexuality and romantic relationships, and future education and employment plans [ 67 ]. The same survey of AYAs with Klinefelter syndrome found that nearly one-third stated that psychological challenges including depression, anxiety, low self-esteem, mood instability were of the greatest concern followed by reproductive health concerns [ 64 ]. Other worries of AYAs include how to communicate the diagnosis and its reproductive impact to partners or friends [ 61 ], managing side effects related to hormone replacement therapy and the transition to adult care [ 62 , 63 , 67 ].

Parents should be encouraged to carefully think through when to disclose the SCM diagnosis to their child [ 68 ]. There are diverse views on diagnosis disclosure; some parents prefer early disclosure as a means of normalizing the condition, whereas others believe the diagnosis should only be disclosed when they feel their child is developmentally ready, even as late as early adulthood. Parents may want to avoid early disclosure to prevent internalized stigma [ 33 ] or to minimize negative impact on self-esteem [ 38 , 69 ] although at least one study suggests perceived stigmatization among adolescents and adults with Klinefelter’s is low [ 70 ]. The literature suggests that most parents of children diagnosed in early or late childhood believe the diagnosis should be communicated to a child before they reach their teen years and that perception of condition severity influences this decision [ 38 , 39 , 40 ]. Parents may also elect to inform their child of the SCM though a ‘seed planting’ approach, using developmentally appropriate language in early childhood, followed by increasingly in-depth disclosure as the child ages. This strategy may mitigate child anxiety or suspicion while allowing parents to individualize the framing of the conversation to the personality, abilities, and needs of their child. Additional guidance on disclosing a genetic diagnosis is available in the literature [ 38 , 41 ].

On rare occasion, a parent may request to withhold the diagnosis from a child or delay communication of diagnosis until adulthood. This may raise ethical dilemmas for providers regarding their clinical duty to medically care for and act in the best interests of their pediatric patients while also respecting parental authority [ 71 , 72 , 73 ]. It is generally not advisable to hide a SCM diagnosis from an affected individual because it may result in confusion and harm as they navigate educational, social, and reproductive difficulties [ 73 ]. Many adults with SCM report that they wish their diagnosis was discovered or disclosed much earlier in life to give context to their struggles and for early initiation of therapies [ 34 ]. It may be helpful to discuss the potential negatives of postponed disclosure with parents, including child suspicion and anxiety of a ‘secret’ condition, the potential for inopportune disclosure in overheard conversations or through their child’s own exploration of their symptoms, and resentment that they were not told earlier [ 38 , 41 , 74 , 75 ]. Patients with SCM have a right to understand the physical, cognitive, and reproductive impact of their condition. Pediatric patients’ increasing autonomy as they mature should also be respected; early disclosure permits pediatric patients to engage in decision-making and assent to their care [ 72 , 73 ]. In cases of parental request for nondisclosure, providers should explore the reasons for this request and clearly communicate their comfort with and limits of nondisclosure (e.g., will not lie or evade answering a direct question from the pediatric patient about the cause of their symptoms; will disclose in a developmentally appropriate manner as it becomes relevant to their reproductive or medical care), while also seeking opportunities to compromise and engage parents in the disclosure process (e.g., joint communication with parents; referral to a genetic counselor for this discussion).

Finally, parents may need assistance weighing the positives and negatives of disclosure to extended family, friends, and other community members. Similar to disclosure to a child, parents’ decision to inform extended family and educational staff is impacted by their child’s functioning and support needs [ 40 ]. Selective disclosure to teachers, child care workers, and/or others involved in the ongoing care of the child may allow for greater understanding and empathy towards behaviors, needs, and struggles and avoid perceptions that a child is simply poorly behaved or disciplined [ 27 , 39 ]. In other circumstances, such as sporting activities or other transient social events, disclosure may raise privacy concerns or have heightened potential that the condition could be incidentally disclosed to peers. Disclosure also carries the risk that typical age-related behaviors may be over-attributed to the SCM or raise concerns about the best way to correct or mitigate unwanted behaviors with this additional knowledge.

Of the 12 papers reviewed on diagnosis disclosure, six were conducted in the United States and the others were from Australia, United Kingdom and Italy. Since the body of evidence is very limited, it is difficult to assess any country-specific findings for comparison. However, issues and concerns about diagnosis disclosure were well-aligned among the papers.

Strengths & limitations

Limitations of integrative reviews include potential problems with accuracy, bias, or rigor as different methodologies are used across included studies. The major strength of this review, however, is that it addresses a gap in the literature about evidence-based recommendations for genetic diagnosis disclosure in SCM and offers useful recommendations that can be used in practice by pediatric health care providers.

Our review has identified important factors to be considered when informing a patient or caregiver about the diagnosis of SCM. This review is combined with what is known about SCM to provide clinicians with information and insight as they prepare to inform patients and caregivers about the diagnosis. We offer practical strategies to navigate the challenging responsibility of delivering a SCM diagnosis and avoid the more ethically concerning experiences previously reported by parents and individuals. Pediatric clinicians are in an optimal position to provide sensitive delivery of an SCM diagnosis and post-diagnostic support to children, AYAs, and their families. More research is needed to understand how patients and caregivers receive the diagnosis of SCM and how their needs and preferences can be incorporated into practice for clinicians who deliver these diagnoses.

Availability of data and materials

Data for the literature review has been uploaded in supplementary files. These files may also be accessed here: https://pubmed.ncbi.nlm.nih.gov/collections/63798536/?sort=pubdate.

Abbreviations

Sex chromosome multisomies

United States

Individualized Education Plan

Individuals with Disabilities Act

Adolescents and Young Adults

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Acknowledgements

We thank the parents and individuals who have participated in studies included in this review.

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Kirsten A. Riggan & Megan A. Allyse

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Kelly E. Ormond

Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA

Department of Obstetrics & Gynecology, Mayo Clinic, Rochester, MN, USA

Megan A. Allyse

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Riggan, K.A., Ormond, K.E., Allyse, M.A. et al. Evidence-based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review. BMC Pediatr 24 , 263 (2024). https://doi.org/10.1186/s12887-024-04723-0

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DOI : https://doi.org/10.1186/s12887-024-04723-0

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Chapter 9. Reviewing the Literature

Examples of Literature Reviews

Reader-Friendly Example: The Power of Peers

Authoritative Academic Journal Example: Working Class Students’ College Expectations

Embracing Theory

Helpful Tips

Where to Start Looking for Literature

Keep a List of Your Keywords

Think Laterally

Read Outside the Canon

Consider Multiple Uses for Literature

Describing Gaps in the Literature

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Ask Yourself, “How Is This Sociology (or Political Science or Public Policy, Etc.)?”

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Supplement: Two More Literature Review Examples

”Changing Dispositions among the Upwardly Mobile” by Curl, Lareau, and Wu ( 2018 )

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Writing a Literature Review

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Literature Review: The What, Why and How-to Guide — Introduction

What are Literature Reviews?

Goals of Literature Reviews

Types of Literature Reviews

Literature Reviews in the Health Sciences

How to Operate Literature Review Through Qualitative and Quantitative Analysis Integration?

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A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence-Based Practice in Nursing and Health Care

Dissertations and research projects

Developing a theoretical framework

Why do I need a theoretical framework?

How do I choose the 'right' approach?

Introduction

Literature review

Methodology

A summary of your key findings – what you have concluded from your research, and how far you have been able to successfully answer your research questions.

Alternative structure

Handbook of eHealth Evaluation: An Evidence-based Approach [Internet].

9.1. Introduction

9.2. Overview of the Literature Review Process and Steps

9.3. Types of Review Articles and Brief Illustrations

9.3.1. Narrative Reviews

9.3.2. Descriptive or Mapping Reviews

9.3.3. Scoping Reviews

9.3.4. Forms of Aggregative Reviews