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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.

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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.

Further Readings

Bloomberg, Linda Dale, and Marie F. Volpe. 2012. Completing Your Qualitative Dissertation: A Road Map from Beginning to End . 2nd ed. Thousand Oaks, CA: SAGE. In keeping with its general approach to qualitative research, includes a “road map” for conducting a literature review.

Hart, Chris. 1998. Doing a Literature Review: Releasing the Social Science Research Imagination . London: SAGE. A how-to book dedicated entirely to conducting a literature review from a British perspective. Useful for both undergraduate and graduate students.

Machi, Lawrence A., and Brenda T. McEvoy. 2022. The Literature Review: Six Steps to Success . 4th ed. Newbury Park, CA: Corwin. A well-organized guidebook complete with reflection sections to prompt successful thinking about your literature review.

Ridley, Diana. 2008. The Literature Review: A Step-by-Step Guide for Students . London: SAGE. A highly recommended companion to conducting a literature review for doctoral-level students.

The process of systematically searching through pre-existing studies (“literature”) on the subject of research; also, the section of a presentation in which the pre-existing literature is discussed.

Follow-up questions used in a semi-structured interview  to elicit further elaboration.  Suggested prompts can be included in the interview guide  to be used/deployed depending on how the initial question was answered or if the topic of the prompt does not emerge spontaneously.

A tool for identifying relationships among ideas by visually representing them on paper.  Most concept maps depict ideas as boxes or circles (also called nodes), which are structured hierarchically and connected with lines or arrows (also called arcs). These lines are labeled with linking words and phrases to help explain the connections between concepts.  Also known as mind mapping.

The people who are the subjects of an interview-based qualitative study. In general, they are also known as the participants, and for purposes of IRBs they are often referred to as the human subjects of the research.

Introduction to Qualitative Research Methods Copyright © 2023 by Allison Hurst is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License , except where otherwise noted.

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Exploring the literature review 

Literature review model: 6 steps.

literature review process

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

Your Literature Review

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

Right arrow

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 .

Database

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).

Recommended Reading

Cover Art

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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  • v.9(1); 2015 Feb

Qualitative systematic reviews: their importance for our understanding of research relevant to pain

This article outlines what a qualitative systematic review is and explores what it can contribute to our understanding of pain. Many of us use evidence of effectiveness for various interventions when working with people in pain. A good systematic review can be invaluable in bringing together research evidence to help inform our practice and help us understand what works. In addition to evidence of effectiveness, understanding how people with pain experience both their pain and their care can help us when we are working with them to provide care that meets their needs. A rigorous qualitative systematic review can also uncover new understandings, often helping illuminate ‘why’ and can help build theory. Such a review can answer the question ‘What is it like to have chronic pain?’ This article presents the different stages of meta-ethnography, which is the most common methodology used for qualitative systematic reviews. It presents evidence from four meta-ethnographies relevant to pain to illustrate the types of findings that can emerge from this approach. It shows how new understandings may emerge and gives an example of chronic musculoskeletal pain being experienced as ‘an adversarial struggle’ across many aspects of the person’s life. This article concludes that evidence from qualitative systematic reviews has its place alongside or integrated with evidence from more quantitative approaches.

Many of us use evidence of effectiveness for various interventions when working with people in pain. A good systematic review can be invaluable in bringing together research evidence to help inform our practice and help us understand what works. In addition to evidence of effectiveness, understanding how people with pain experience both their pain and their care can help us when we are working with them to provide care that meets their needs. A high-quality qualitative systematic review can also uncover new understandings, often helping illuminate ‘why’ and can help build theory. A qualitative systematic review could answer the question ‘What is it like to have chronic non-malignant pain?’

The purpose of this article is to outline what a qualitative systematic review is and explore what it can contribute to our understanding of pain. A qualitative systematic review brings together research on a topic, systematically searching for research evidence from primary qualitative studies and drawing the findings together. There is a debate over whether the search needs to be exhaustive. 1 , 2 Methods for systematic reviews of quantitative research are well established and explicit and have been pioneered through the Cochrane Collaboration. Methods for qualitative systematic reviews have been developed more recently and are still evolving. The Cochrane Collaboration now has a Qualitative and Implementation Methods Group, including a register of protocols, illustrating the recognition of the importance of qualitative research within the Cochrane Collaboration. In November 2013, an editorial described the Cochrane Collaboration’s first publication of a qualitative systematic review as ‘a new milestone’ for Cochrane. 3 Other editorials have raised awareness of qualitative systematic reviews in health. 4

Noblit and Hare 5 were pioneers in the area of synthesising qualitative data. They describe such reviews as aggregated or as interpretative. The aggregated review summarises the data, and Hannes and Pearson 6 provide a worked example of an aggregation approach. Interpretative approaches, as the name suggests, interpret the data, and from that interpretation, new understandings can develop that may lead to development of a theory that helps us to understand or predict behaviour. Types of interpretative qualitative systematic reviews include meta-ethnography, critical interpretative synthesis, realist synthesis and narrative synthesis. More details about these and other approaches can be found in other papers and books. 1 , 5 , 7 – 11 This article will describe one approach, meta-ethnography, as it was identified as the most frequently used approach, 1 and there are some examples using meta-ethnography that focus on pain. A meta-ethnographic approach can be used with a variety of qualitative methodologies, not only ethnography. The data for a meta-ethnography are the concepts or themes described by the authors of the primary studies.

Noblit and Hare 5 outlined the seven steps of a meta-ethnography: (1) getting started, (2) deciding what is relevant, (3) reading the studies, (4) determining how studies are related to each other, (5) translating studies into each other, (6) synthesising translations and (7) expressing the synthesis.

The first three might seem relatively straightforward, although Lee et al. 12 emphasised both the importance and nuances of the reading stage, and Toye et al. 13 discuss the complexities of making quality assessments of qualitative papers and searching for this type of study. You need to understand what data to extract from the papers and how you are going to do this.

You have to first identify what is a concept and what is purely descriptive. Toye et al. 2 describe a process for collaboratively identifying concepts. In determining how studies are related to each other and translating them into each other, the meta-ethnographer compares the concepts found in each study with each other and then groups similar concepts into conceptual themes. Translating studies into each other involves looking at where concepts between studies agree (reciprocal synthesis) and where they do not agree (refutational synthesis). Developing conceptual categories can be challenging as you need to judge the extent to which a concept from one study adequately reflects concepts from other studies and choose one that seems to fit best. This is discussed in more detail in Toye et al. 2 , 13

To synthesise the translation, a line of argument is then developed from the conceptual categories. How the concepts group and relate to each other are developed. This provides an overall interpretation of the findings, ensuring this is grounded in the data from the primary studies. You are aiming to explain, and new concepts and understandings may emerge, which can then go on to underpin development of theory. For example, a qualitative systematic review that explored medicine taking found that ‘resistance’ was a new concept, revealed through meta-ethnography, and this helped understanding of lay responses to medicine taking. 1 Hannes and Macaitis, 14 in a review of published papers, reported that over time, authors have become more transparent about searching and critical appraisal, but that the synthesis element of reviews is often not well described. Being transparent about decisions that are interpretative has its own challenges. Working collaboratively to challenge interpretations and assumptions can be helpful. 2 , 12 The next section will use examples of qualitative systematic reviews from the pain field to illuminate what this type of review can contribute to our understanding of pain.

What can a qualitative systematic review contribute to the field of pain – some examples

Toye et al. 2 , 15 undertook a meta-ethnography to look at patients’ experiences of chronic non-malignant musculoskeletal pain. At the time of this research, no other qualitative systematic reviews had been published in this area. Their review included 77 papers reporting 60 individual studies, resulting from searches of six electronic bibliographic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, AMED and HMIC) from inception until February 2012 and hand-searching key journals from 2001 to 2012.

They developed a new concept which they identified as an ‘adversarial struggle’. This struggle took place across five main dimensions: (1) there was a struggle to affirm themselves, where there was a tension between the ‘real me’ (without pain) and ‘not real me’ (me with pain). (2) The present and future were often unpredictable, and construction of time was altered and they struggled to reconstruct themselves in time. (3) People struggled to find an acceptable explanation for their pain and suffering. (4) There was a struggle to negotiate the healthcare system and (5) a struggle for pain to be seen as legitimate, including the need to be believed, and a struggle to know whether to show or hide their pain. Some people were able to move forward with pain. They saw their body as more integrated, they re-defined what was normal, they told people about their pain, they were part of a community of people with pain and they felt more expert on how their pain affected them and what they could do about it.

So, this meta-ethnography highlighted the adversarial nature of having chronic musculoskeletal pain and how this struggle pervaded many different areas of their life. It also illustrated how by showing patients their pain is understood and being alongside the person in pain, they can start to move forward. A short film based on the 77 papers in this meta-ethnography has been made and is available on YouTube. 16 This film was made as an attempt to disseminate the findings of a meta-ethnography in a way that is accessible to a range of people.

Snelgrove and Liossi 17 undertook a meta-ethnography of qualitative research in chronic low back pain (CLBP) using meta-ethnography. They included 33 papers of 28 studies published between 2000 and 2012. They identified three overarching themes of (1) the impact of CLBP on self, (2) relationships with others (health professionals and family and friends) and (3) coping with CLBP. They found that very few successful coping strategies were reported. Like Toye et al., 2 , 15 they also reported disruption to self, distancing their valued self from their painful self, legitimising pain, the struggle to manage daily living and the importance of social relationships alongside negotiation of their care in the health system.

MacNeela et al. 18 also undertook a meta-ethnography of experiences of CLBP. They included 38 articles published between 1994 and 2012 representing 28 studies. They identified four themes: (1) the undermining influence of pain, (2) the disempowering impact on all levels, (3) unsatisfying relationships with healthcare professionals and (4) learning to live with the pain. They reported the findings being dominated by ‘wide-ranging distress and loss’. They discussed the disempowering consequences of pain and a search for help. However, they also highlighted self-determination and resilience and suggested these could offer ‘pathways to endurance’. They emphasised self-management and adaptation, which resonates with the moving forward category reported by Toye et al. 2 , 15

Froud et al. 19 looked at the impact of low back pain on people’s lives. They describe their approach as meta-ethnographic and meta-narrative. They included 49 papers of about 42 studies from inception of databases searched until July 2011. They described five themes: activities, relationships, work, stigma and changing outlook, which they derived from ‘participant-level data’. They described their findings as showing patients wanted to be believed. They highlighted the importance of social factors when developing relevant outcome measures. There are other examples of qualitative systematic reviews relevant to pain. 20 – 23

Different qualitative systematic reviews on a similar subject may come up with overlapping but also some different findings. This could be, for example, because different search periods or different inclusion criteria are used, so different primary studies may be included in different reviews. In addition, undertaking a qualitative systematic review requires researchers to interpret concepts. This interpretation does not need to be a limitation. For example, to ensure rigour and transparency, Toye et al. 24 report a process of collaborative interpretation of concepts among a team of experienced qualitative researchers to ensure individual interpretations were challenged and remained grounded in the original studies. They also published a detailed audit trail of the processes and decisions made. 2 Campbell et al. 1 argue ‘Meta-ethnography is a highly interpretative method requiring considerable immersion in the individual studies to achieve a synthesis. It places substantial demands upon the synthesiser and requires a high degree of qualitative research skill’. It is important to be able to think conceptually when undertaking a meta-ethnography, and it can be a time-consuming process. However, the ability of a meta-ethnography to synthesise a large number of primary research studies, generate new conceptual understandings and thus increase our understanding of patients’ experiences of pain makes it a very useful resource for our evidence-based practice.

The way forward

A register of qualitative systematic reviews would be useful for researchers and clinicians, so there was a clear way of identifying existing qualitative reviews or reviews that are planned or underway. The Cochrane Collaboration does now have a register for protocols of qualitative systematic reviews being undertaken under the aegis of the Cochrane Qualitative and Implementation Methods Group. It would help those wanting to undertake qualitative systematic reviews if reviews that were underway were registered and described more clearly to prevent duplication of effort, for example, using ‘qualitative systematic review’ and the methodological approach used (such as meta-ethnography) in the title and/or abstract. The Toye et al. 2 protocol 25 was accessible on the National Institutes for Health website from 2010. The Snelgrove and Liossi 17 study was done without external funding, so it would be difficult to pick up that it was underway. The MacNeela et al. 18 study was listed on the Irish Research Council for the Humanities and Social Sciences under their Research Development Initiative 2008–2009, but was described as ‘Motivation and Beliefs among People Experiencing Chronic Low Back Pain’, so it was not clearly identified at that stage as a qualitative systematic review. Finally, the Froud et al. 19 award details 26 do not mention qualitative systematic reviews or meta-ethnography. This highlights the difficulty of finding some of these reviews and the importance of a register of both completed and ongoing reviews.

This article has argued that qualitative systematic reviews have their place alongside or integrated with more quantitative approaches. There is an increasing body of evidence from qualitative systematic reviews. They can synthesise primary research, and this can be helpful for the busy practitioner. The methods for these approaches are still developing, and attention to rigour at each stage is crucial. It is important that each stage of the synthesis is reported transparently and that the researchers’ stance is clearly reported. 27 Meta-ethnographies published over the last year 2 , 15 , 17 – 19 have drawn together a wide range of primary studies and shown that people’s lives can be markedly changed by their pain across multiple dimensions of their life.

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors received no financial support for the research, authorship, and/or publication of this article.

Qualitative Research

Literature Review

Literature review is important because it:

  • Provides ideas about what should be studied;
  • Helps us conduct inquires that have not already been done
  • Connects our research to existing studies

But…doing a literature review is not simply summarizing (or copying) what you think is related and useful to your work. BEING CRITICAL AND CAREFUL IS A MUST !

In reviewing existing literature, you may try to look for gaps in the field and rework your study in a different setting or with different people. Nonetheless, literature review is a continuous sense-making process -- you need to review the literature continuously in order to organize your thoughts and refine your analysis.

A good literature review should be able to:  

  • Connect to your research questions
  • Connect to your choice of methods and research design
  • Support your data analysis
  • Help you draw conclusions and make claims about your research.

Selecting your literature with a purpose

It is impossible to read everything, so when selecting literature  for reviewing, consider these:

  • Is it relevant to your topic/field of study?
  • Is it a primary source from the researcher(s) or secondary source (e.g. a summary you read in a book about someone’s research)?
  • Is it updated?

Nature of literatures:

Your literature review can be of different dimensions. Each has its foci and purposes

reviewing the literature in qualitative research

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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:

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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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  • Volume 29, Issue 3
  • Rapid reviews methods series: guidance on rapid qualitative evidence synthesis
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  • http://orcid.org/0000-0003-4808-3880 Andrew Booth 1 , 2 ,
  • Isolde Sommer 3 , 4 ,
  • http://orcid.org/0000-0003-4238-5984 Jane Noyes 2 , 5 ,
  • Catherine Houghton 2 , 6 ,
  • Fiona Campbell 1 , 7
  • The Cochrane Rapid Reviews Methods Group and Cochrane Qualitative and Implementation Methods Group (CQIMG)
  • 1 EnSyGN Sheffield Evidence Synthesis Group , University of Sheffield , Sheffield , UK
  • 2 Cochrane Qualitative and Implementation Methods Group (CQIMG) , London , UK
  • 3 Department for Evidence-based Medicine and Evaluation , University for Continuing Education Krems , Krems , Austria
  • 4 Cochrane Rapid Reviews Group & Cochrane Austria , Krems , Austria
  • 5 Bangor University , Bangor , UK
  • 6 University of Galway , Galway , Ireland
  • 7 University of Newcastle upon Tyne , Newcastle upon Tyne , UK
  • Correspondence to Professor Andrew Booth, Univ Sheffield, Sheffield, UK; a.booth{at}sheffield.ac.uk

This paper forms part of a series of methodological guidance from the Cochrane Rapid Reviews Methods Group and addresses rapid qualitative evidence syntheses (QESs), which use modified systematic, transparent and reproducible methodsu to accelerate the synthesis of qualitative evidence when faced with resource constraints. This guidance covers the review process as it relates to synthesis of qualitative research. ‘Rapid’ or ‘resource-constrained’ QES require use of templates and targeted knowledge user involvement. Clear definition of perspectives and decisions on indirect evidence, sampling and use of existing QES help in targeting eligibility criteria. Involvement of an information specialist, especially in prioritising databases, targeting grey literature and planning supplemental searches, can prove invaluable. Use of templates and frameworks in study selection and data extraction can be accompanied by quality assurance procedures targeting areas of likely weakness. Current Cochrane guidance informs selection of tools for quality assessment and of synthesis method. Thematic and framework synthesis facilitate efficient synthesis of large numbers of studies or plentiful data. Finally, judicious use of Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research assessments and of software as appropriate help to achieve a timely and useful review product.

  • Systematic Reviews as Topic
  • Patient Care

Data availability statement

No data are available. Not applicable. All data is from published articles.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjebm-2023-112620

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WHAT IS ALREADY KNOWN ON THIS TOPIC

Rapid Qualitative Evidence Synthesis (QES) is a relatively recent innovation in evidence synthesis and few published examples currently exists.

Guidance for authoring a rapid QES is scattered and requires compilation and summary.

WHAT THIS STUDY ADDS

This paper represents the first attempt to compile current guidance, illustrated by the experience of several international review teams.

We identify features of rapid QES methods that could be accelerated or abbreviated and where methods resemble those for conventional QESs.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

This paper offers guidance for researchers when conducting a rapid QES and informs commissioners of research and policy-makers what to expect when commissioning such a review.

Introduction

This paper forms part of a series from the Cochrane Rapid Reviews Methods Group providing methodological guidance for rapid reviews. While other papers in the series 1–4 focus on generic considerations, we aim to provide in-depth recommendations specific to a resource-constrained (or rapid) qualitative evidence synthesis (rQES). 5 This paper is accompanied by recommended resources ( online supplemental appendix A ) and an elaboration with practical considerations ( online supplemental appendix B ).

Supplemental material

The role of qualitative evidence in decision-making is increasingly recognised. 6 This, in turn, has led to appreciation of the value of qualitative evidence syntheses (QESs) that summarise findings across multiple contexts. 7 Recognition of the need for such syntheses to be available at the time most useful to decision-making has, in turn, driven demand for rapid qualitative evidence syntheses. 8 The breadth of potential rQES mirrors the versatility of QES in general (from focused questions to broad overviews) and outputs range from descriptive thematic maps through to theory-informed syntheses (see table 1 ).

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Glossary of important terms (alphabetically)

As with other resource-constrained reviews, no one size fits all. A team should start by specifying the phenomenon of interest, the review question, 9 the perspectives to be included 9 and the sample to be determined and selected. 10 Subsequently, the team must finalise the appropriate choice of synthesis. 11 Above all, the review team should consider the intended knowledge users, 3 including requirements of the funder.

An rQES team, in particular, cannot afford any extra time or resource requirements that might arise from either a misunderstanding of the review question, an unclear picture of user requirements or an inappropriate choice of methods. The team seeks to align the review question and the requirements of the knowledge user with available time and resources. They also need to ensure that the choice of data and choice of synthesis are appropriate to the intended ‘knowledge claims’ (epistemology) made by the rQES. 11 This involves the team asking ‘what types of data are meaningful for this review question?’, ‘what types of data are trustworthy?’ and ‘is the favoured synthesis method appropriate for this type of data?’. 12 This paper aims to help rQES teams to choose methods that best fit their project while understanding the limitations of those choices. Our recommendations derive from current QES guidance, 5 evidence on modified QES methods, 8 13 and practical experience. 14 15

This paper presents an overview of considerations and recommendations as described in table 2 . Supplemental materials including additional resources details of our recommendations and practical examples are provided in online supplemental appendices A and B .

Recommendations for resource-constrained qualitative evidence synthesis (rQES)

Setting the review question and topic refinement

Rapid reviews summarise information from multiple research studies to produce evidence for ‘the public, researchers, policymakers and funders in a systematic, resource-efficient manner’. 16 Involvement of knowledge users is critical. 3 Given time constraints, individual knowledge users could be asked only to feedback on very specific decisions and tasks or on selective sections of the protocol. Specifically, whenever a QES is abbreviated or accelerated, a team should ensure that the review question is agreed by a minimum number of knowledge users with expertise or experience that reflects all the important review perspectives and with authority to approve the final version 2 5 11 ( table 2 , item R1).

Involvement of topic experts can ensure that the rQES is responsive to need. 14 17 One Cochrane rQES saved considerable time by agreeing the review topic within a single meeting and one-phase iteration. 9 Decisions on topics to be omitted are also informed by a knowledge of existing QESs. 17

An information specialist can help to manage the quantity and quality of available evidence by setting conceptual boundaries and logistic limits. A structured question format, such as Setting-Perspective-Interest, phenomenon of-Comparison-Evaluation or Population-Interest, phenomenon of-Context helps in communicating the scope and, subsequently, in operationalising study selection. 9 18

Scoping (of review parameters) and mapping (of key types of evidence and likely richness of data) helps when planning the review. 5 19 The option to choose purposive sampling over comprehensive sampling approaches, as offered by standard QES, may be particularly helpful in the context of a rapid QES. 8 Once a team knows the approximate number and distribution of studies, perhaps mapping them against country, age, ethnicity, etc), they can decide whether or not to use purposive sampling. 12 An rQES for the WHO combined purposive with variation sampling. Sampling in two stages started by reducing the initial number of studies to a more manageable sampling frame and then sampling approximately a third of the remaining studies from within the sampling frame. 20

Sampling may target richer studies and/or privilege diversity. 8 21 A rich qualitative study typically illustrates findings with verbatim extracts from transcripts from interviews or textual responses from questionnaires. Rich studies are often found in specialist qualitative research or social science journals. In contrast, less rich studies may itemise themes with an occasional indicative text extract and tend to summarise findings. In clinical or biomedical journals less rich findings may be placed within a single table or box.

No rule exists on an optimal number of studies; too many studies makes it challenging to ‘maintain insight’, 22 too few does not sustain rigorous analysis. 23 Guidance on sampling is available from the forthcoming Cochrane-Campbell QES Handbook.

A review team can use templates to fast-track writing of a protocol. The protocol should always be publicly available ( table 2 , item R2). 24 25 Formal registration may require that the team has not commenced data extraction but should be considered if it does not compromise the rQES timeframe. Time pressures may require that methods are left suitably flexible to allow well-justified changes to be made as a detailed picture of the studies and data emerge. 26 The first Cochrane rQES drew heavily on text from a joint protocol/review template previously produced within Cochrane. 24

Setting eligibility criteria

An rQES team may need to limit the number of perspectives, focusing on those most important for decision-making 5 9 27 ( table 2 , item R3). Beyond the patients/clients each additional perspective (eg, family members, health professionals, other professionals, etc) multiplies the additional effort involved.

A rapid QES may require strict date and setting restrictions 17 and language restrictions that accommodate the specific requirements of the review. Specifically, the team should consider whether changes in context over time or substantive differences between geographical regions could be used to justify a narrower date range or a limited coverage of countries and/or languages. The team should also decide if ‘indirect evidence’ is to substitute for the absence of direct evidence. An rQES typically focuses on direct evidence, except when only indirect evidence is available 28 ( table 2 , item R4). Decisions on relevance are challenging—precautions for swine influenza may inform precautions for bird influenza. 28 A smoking ban may operate similarly to seat belt legislation, etc. A review team should identify where such shared mechanisms might operate. 28 An rQES team must also decide whether to use frameworks or models to focus the review. Theories may be unearthed within the topic search or be already known to team members, fro example, Theory of Planned Behaviour. 29

Options for managing the quantity and quality of studies and data emerge during the scoping (see above). In summary, the review team should consider privileging rich qualitative studies 2 ; consider a stepwise approach to inclusion of qualitative data and explore the possibility of sampling ( table 2 , item R5). For example, where data is plentiful an rQES may be limited to qualitative research and/or to mixed methods studies. Where data is less plentiful then surveys or other qualitative data sources may need to be included. Where plentiful reviews already exist, a team may decide to conduct a review of reviews 5 by including multiple QES within a mega-synthesis 28 29 ( table 2 , item R6).

Searching for QES merits its own guidance, 21–23 30 this section reinforces important considerations from guidance specific to qualitative research. Generic guidance for rapid reviews in this series broadly applies to rapid QESs. 1

In addition to journal articles, by far the most plentiful source, qualitative research is found in book chapters, theses and in published and unpublished reports. 21 Searches to support an rQES can (a) limit the number of databases searched, deliberately selecting databases from diverse disciplines, (b) use abbreviated study filters to retrieve qualitative designs and (c) employ high yield complementary methods (eg, reference checking, citation searching and Related Articles features). An information specialist (eg, librarian) should be involved in prioritising sources and search methods ( table 2 , item R7). 11 14

According to empirical evidence optimal database combinations include Scopus plus CINAHL or Scopus plus ProQuest Dissertations and Theses Global (two-database combinations) and Scopus plus CINAHL plus ProQuest Dissertations and Theses Global (three-database combination) with both choices retrieving between 89% and 92% of relevant studies. 30

If resources allow, searches should include one or two specialised databases ( table 2 , item R8) from different disciplines or contexts 21 (eg, social science databases, specialist discipline databases or regional or institutional repositories). Even when resources are limited, the information specialist should factor in time for peer review of at least one search strategy ( table 2 , item R9). 31 Searches for ‘grey literature’ should selectively target appropriate types of grey literature (such as theses or process evaluations) and supplemental searches, including citation chaining or Related Articles features ( table 2 , item R10). 32 The first Cochrane rQES reported that searching reference lists of key papers yielded an extra 30 candidate papers for review. However, the team documented exclusion of grey literature as a limitation of their review. 15

Study selection

Consistency in study selection is achieved by using templates, by gaining a shared team understanding of the audience and purpose, and by ongoing communication within, and beyond, the team. 2 33 Individuals may work in parallel on the same task, as in the first Cochrane rQES, or follow a ‘segmented’ approach where each reviewer is allocated a different task. 14 The use of machine learning in the specific context of rQES remains experimental. However, the possibility of developing qualitative study classifiers comparable to those for randomised controlled trials offers an achievable aspiration. 34

Title and abstract screening

The entire screening team should use pre-prepared, pretested title and abstract templates to limit the scale of piloting, calibration and testing ( table 2 , item R11). 1 14 The first Cochrane rQES team double-screened titles and abstracts within Covidence review software. 14 Disagreements were resolved with reference to a third reviewer achieving a shared understanding of the eligibility criteria and enhancing familiarity with target studies and insight from data. 14 The team should target and prioritise identified risks of either over-zealous inclusion or over-exclusion specific to each rQES ( table 2 , item R12). 14 The team should maximise opportunities to capture divergent views and perspectives within study findings. 35

Full-text screening

Full-text screening similarly benefits from using a pre-prepared pretested standardised template where possible 1 14 ( table 2 , item R11). If a single reviewer undertakes full-text screening, 8 the team should identify likely risks to trustworthiness of findings and focus quality control procedures (eg, use of additional reviewers and percentages for double screening) on specific threats 14 ( table 2 , item R13). The Cochrane rQES team opted for double screening to assist their immersion within the topic. 14

Data extraction

Data extraction of descriptive/contextual data may be facilitated by review management software (eg, EPPI-Reviewer) or home-made approaches using Google Forms, or other survey software. 36 Where extraction of qualitative findings requires line-by-line coding with multiple iterations of the data then a qualitative data management analysis package, such as QSR NVivo, reaps dividends. 36 The team must decide if, collectively, they favour extracting data to a template or coding direct within an electronic version of an article.

Quality control must be fit for purpose but not excessive. Published examples typically use a single reviewer for data extraction 8 with use of two independent reviewers being the exception. The team could limit data extraction to minimal essential items. They may also consider re-using descriptive details and findings previously extracted within previous well-conducted QES ( table 2 , item R14). A pre-existing framework, where readily identified, may help to structure the data extraction template. 15 37 The same framework may be used to present the findings. Some organisations may specify a preferred framework, such as an evidence-to-decision-making framework. 38

Assessment of methodological limitations

The QES community assess ‘methodological limitations’ rather than use ‘risk of bias’ terminology. An rQES team should pick an approach appropriate to their specific review. For example, a thematic map may not require assessment of individual studies—a brief statement of the generic limitations of the set of studies may be sufficient. However, for any synthesis that underpins practice recommendations 39 assessment of included studies is integral to the credibility of findings. In any decision-making context that involves recommendations or guidelines, an assessment of methodological limitations is mandatory. 40 41

Each review team should work with knowledge users to determine a review-specific approach to quality assessment. 27 While ‘traffic lights’, similar to the outputs from the Cochrane Risk of Bias tool, may facilitate rapid interpretation, accompanying textual notes are invaluable in highlighting specific areas for concern. In particular, the rQES team should demonstrate that they are aware (a) that research designs for qualitative research seek to elicit divergent views, rather than control for variation; (b) that, for qualitative research, the selection of the sample is far more informative than the size of the sample; and (c) that researchers from primary research, and equally reviewers for the qualitative synthesis, need to be thoughtful and reflexive about their possible influences on interpretation of either the primary data or the synthesised findings.

Selection of checklist

Numerous scales and checklists exist for assessing the quality of qualitative studies. In the absence of validated risk of bias tools for qualitative studies, the team should choose a tool according to Cochrane Qualitative and Implementation Methods Group (CQIMG) guidance together with expediency (according to ease of use, prior familiarity, etc) ( table 2 , item R15). 41 In comparison to the Critical Appraisal Skills Programme checklist which was never designed for use in synthesis, 42 the Cochrane qualitative tool is similarly easy to use and was designed for QES use. Work is underway to identify an assessment process that is compatible with QESs that support decision-making. 41 For now the choice of a checklist remains determined by interim Cochrane guidance and, beyond this, by personal preference and experience. For an rQES a team could use a single reviewer to assess methodological limitations, with verification of judgements (and support statements) by a second reviewer ( table 2 , item R16).

The CQIMG endorses three types of synthesis; thematic synthesis, framework synthesis and meta-ethnography ( box 1 ). 43 44 Rapid QES favour descriptive thematic synthesis 45 or framework synthesis, 46 47 except when theory generation (meta-ethnography 48 49 or analytical thematic synthesis) is a priority ( table 2 , item R17).

Choosing a method for rapid qualitative synthesis

Thematic synthesis: first choice method for rQES. 45 For example, in their rapid QES Crooks and colleagues 44 used a thematic synthesis to understand the experiences of both academic and lived experience coresearchers within palliative and end of life research. 45

Framework synthesis: alternative where a suitable framework can be speedily identified. 46 For example, Bright and colleagues 46 considered ‘best-fit framework synthesis’ as appropriate for mapping study findings to an ‘a priori framework of dimensions measured by prenatal maternal anxiety tools’ within their ‘streamlined and time-limited evidence review’. 47

Less commonly, an adapted meta-ethnographical approach was used for an implementation model of social distancing where supportive data (29 studies) was plentiful. 48 However, this QES demonstrates several features that subsequently challenge its original identification as ‘rapid’. 49

Abbrevations: QES, qualitative evidence synthesis; rQES, resource-constrained qualitative evidence synthesis.

The team should consider whether a conceptual model, theory or framework offers a rapid way for organising, coding, interpreting and presenting findings ( table 2 , item R18). If the extracted data appears rich enough to sustain further interpretation, data from a thematic or framework synthesis can subsequently be explored within a subsequent meta-ethnography. 43 However, this requires a team with substantial interpretative expertise. 11

Assessments of confidence in the evidence 4 are central to any rQES that seeks to support decision-making and the QES-specific Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research (GRADE-CERQual) approach is designed to assess confidence in qualitative evidence. 50 This can be performed by a single reviewer, confirmed by a second reviewer. 26 Additional reviewers could verify all, or a sample of, assessments. For a rapid assessment a team must prioritise findings, using objective criteria; a WHO rQES focused only on the three ‘highly synthesised findings’. 20 The team could consider reusing GRADE-CERQual assessments from published QESs if findings are relevant and of demonstrable high quality ( table 2 , item R19). 50 No rapid approach to full application of GRADE-CERQual currently exists.

Reporting and record management

Little is written on optimal use of technology. 8 A rapid review is not a good time to learn review management software or qualitative analysis management software. Using such software for all general QES processes ( table 2 , item R20), and then harnessing these skills and tools when specifically under resource pressures, is a sounder strategy. Good file labelling and folder management and a ‘develop once, re-use multi-times’ approach facilitates resource savings.

Reporting requirements include the meta-ethnography reporting guidance (eMERGe) 51 and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement. 52 An rQES should describe limitations and their implications for confidence in the evidence even more thoroughly than a regular QES; detailing the consequences of fast-tracking, streamlining or of omitting processes all together. 8 Time spent documenting reflexivity is similarly important. 27 If QES methodology is to remain credible rapid approaches must be applied with insight and documented with circumspection. 53 54 (56)

Ethics statements

Patient consent for publication.

Not applicable.

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

  • Data supplement 1

Correction notice Since this paper first published, updates have been made to the left hand column of table 2.

Contributors All authors (AB, IS, JN, CH, FC) have made substantial contributions to the conception and design of the guidance document. AB led on drafting the work and revising it critically for important intellectual content. All other authors (IS, JN, CH, FC) contributed to revisions of the document. All authors (AB, IS, JN, CH, FC) have given final approval of the version to be published. As members of the Cochrane Qualitative and Implementation Methods Group and/or the Cochrane Rapid Reviews Methods Group all authors (AB, IS, JN, CH, FC) agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests AB is co-convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, he received royalties from Systematic Approaches To a Successful Literature Review (Sage 3rd edition), honoraria from the Agency for Healthcare Research and Quality, and travel support from the WHO. JN is lead convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, she has received honoraria from the Agency for Healthcare Research and Quality and travel support from the WHO. CH is co-convenor of the Cochrane Qualitative and Implementation Methods Group.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; internally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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  • Systematic Review
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  • Published: 30 May 2024

Patient experiences: a qualitative systematic review of chemotherapy adherence

  • Amineh Rashidi 1 ,
  • Susma Thapa 1 ,
  • Wasana Sandamali Kahawaththa Palliya Guruge 1 &
  • Shubhpreet Kaur 1  

BMC Cancer volume  24 , Article number:  658 ( 2024 ) Cite this article

43 Accesses

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Adherence to chemotherapy treatment is recognized as a crucial health concern, especially in managing cancer patients. Chemotherapy presents challenges for patients, as it can lead to potential side effects that may adversely affect their mobility and overall function. Patients may sometimes neglect to communicate these side effects to health professionals, which can impact treatment management and leave their unresolved needs unaddressed. However, there is limited understanding of how patients’ experiences contribute to improving adherence to chemotherapy treatment and the provision of appropriate support. Therefore, gaining insights into patients’ experiences is crucial for enhancing the accompaniment and support provided during chemotherapy.

This review synthesizes qualitative literature on chemotherapy adherence within the context of patients’ experiences. Data were collected from Medline, Web of Science, CINAHL, PsychINFO, Embase, Scopus, and the Cochrane Library, systematically searched from 2006 to 2023. Keywords and MeSH terms were utilized to identify relevant research published in English. Thirteen articles were included in this review. Five key themes were synthesized from the findings, including positive outlook, receiving support, side effects, concerns about efficacy, and unmet information needs. The review underscores the importance for healthcare providers, particularly nurses, to focus on providing comprehensive information about chemotherapy treatment to patients. Adopting recommended strategies may assist patients in clinical practice settings in enhancing adherence to chemotherapy treatment and improving health outcomes for individuals living with cancer.

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Introduction

Cancer can affect anyone and is recognized as a chronic disease characterized by abnormal cell multiplication in the body [ 1 ]. While cancer is prevalent worldwide, approximately 70% of cancer-related deaths occur in low- to middle-income nations [ 1 ]. Disparities in cancer outcomes are primarily attributed to variations in the accessibility of comprehensive diagnosis and treatment among countries [ 1 , 2 ]. Cancer treatment comes in various forms; however, chemotherapy is the most widely used approach [ 3 ]. Patients undergoing chemotherapy experience both disease-related and treatment-related adverse effects, significantly impacting their quality of life [ 4 ]. Despite these challenges, many cancer patients adhere to treatment in the hope of survival [ 5 ]. However, some studies have shown that concerns about treatment efficacy may hinder treatment adherence [ 6 ]. Adherence is defined as “the extent to which a person’s behaviour aligns with the recommendations of healthcare providers“ [ 7 ]. Additionally, treatment adherence is influenced by the information provided by healthcare professionals following a cancer diagnosis [ 8 ]. Patient experiences suggest that the decision to adhere to treatment is often influenced by personal factors, with family support playing a crucial role [ 8 ]. Furthermore, providing adequate information about chemotherapy, including its benefits and consequences, can help individuals living with cancer gain a better understanding of the advantages associated with adhering to chemotherapy treatment [ 9 ].

Recognizing the importance of adhering to chemotherapy treatment and understanding the impact of individual experiences of chemotherapy adherence would aid in identifying determinants of adherence and non-adherence that are modifiable through effective interventions [ 10 ]. Recently, systematic reviews have focused on experiences and adherence in breast cancer [ 11 ], self-management of chemotherapy in cancer patients [ 12 ], and the influence of medication side effects on adherence [ 13 ]. However, these reviews were narrow in scope, and to date, no review has integrated the findings of qualitative studies designed to explore both positive and negative experiences regarding chemotherapy treatment adherence. This review aims to synthesize the qualitative literature on chemotherapy adherence within the context of patients’ experiences.

This review was conducted in accordance with the Joanna Briggs Institute [ 14 ] guidelines for systemic review involving meta-aggregation. This review was registered in PROSPERO (CRD42021270459).

Search methods

The searches for peer reviewed publications in English from January 2006-September 2023 were conducted by using keywords, medical subject headings (MeSH) terms and Boolean operators ‘AND’ and ‘OR’, which are presented in the table in Appendix 1 . The searches were performed in a systematic manner in core databases such including Embase, Medline, PsycINFO, CINAHL, Web of Science, Cochrane Library, Scopus and the Joanna Briggs Institute (JBI). The search strategy was developed from keywords and medical subject headings (MeSH) terms. Librarian’s support and advice were sought in forming of the search strategies.

Study selection and inclusion criteria

The systematic search was conducted on each database and all articles were exported to Endnote and duplicates records were removed. Then, title and abstract of the full text was screened by two independent reviewers against the inclusion criteria. For this review, populations were patients aged 18 and over with cancer, the phenomenon of interest was experiences on chemotherapy adherence and context was considered as hospitals, communities, rehabilitation centres, outpatient clinics, and residential aged care. All peer-reviewed qualitative study design were also considered for inclusion. Studies included in this review were classified as primary research, published in English since 2006, some intervention implemented to improve adherence to treatment. This review excluded any studies that related to with cancer and mental health condition, animal studies and grey literature.

Quality appraisal and data extraction

The JBI Qualitative Assessment and Review Instrument for qualitative studies was used to assess the methodological quality of the included studies, which was conducted by the primary and second reviewers independently. There was no disagreement between the reviews. The qualitative data on objectives, study population, context, study methods, and the phenomena of interest and findings form the included studies were extracted.

Data synthesis

The meta-aggregation approach was used to combine the results with similar meaning. The primary and secondary reviewers created categories based on the meanings and concept. These categories were supported by direct quotations from participants. The findings were assess based on three levels of evidence, including unequivocal, credible, and unsupported [ 15 , 16 ]. Findings with no quotation were not considered for synthesis in this review. The categories and findings were also discussed by the third and fourth reviewers until a consensus was reached. The review was approved by the Edith Cowan University Human Research Ethics Committee (2021–02896).

Study inclusion

A total of 4145 records were identified through a systematic search. Duplicates ( n  = 647) were excluded. Two independent reviewers conducted screening process. The remaining articles ( n  = 3498) were examined for title and abstract screening. Then, the full text screening conducted, yielded 13 articles to be included in the final synthesis see Appendix 2 .

Methodological quality of included studies

All included qualitative studies scored between 7 and 9, which is displayed in Appendix 3 . The congruity between the research methodology and the research question or objectives, followed by applying appropriate data collection and data analysis were observed in all included studies. Only one study [ 17 ] indicated the researcher’s statement regarding cultural or theoretical perspectives. Three studies [ 18 , 19 , 20 ] identified the influence of the researcher on the research and vice-versa.

Characteristics of included studies

Most of studies conducted semi-structured and in-depth interviews, one study used narrative stories [ 19 ], one study used focus group discussion [ 21 ], and one study combined focus group and interview [ 22 ] to collect data. All studies conducted outpatient’s clinic, community, or hospital settings [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. The study characteristics presented in Appendix 4 .

Review findings

Eighteen findings were extracted and synthesised into five categories: positive outlook, support, side effects, concern about efficacy and unmet information needs.

Positive outlook

Five studies discussed the link between positivity and hope and chemotherapy adherence [ 19 , 20 , 23 , 27 , 28 ]. Five studies commented that feeling positive and avoid the negativity and worry could encourage people to adhere in their mindset chemotherapy: “ I think the main thing for me was just keeping a positive attitude and not worrying, not letting myself worry about it ” [ 20 ]. Participants also considered the positive thoughts as a coping mechanism, that would help them to adhere and complete chemotherapy: “ I’m just real positive on how everything is going. I’m confident in the chemo, and I’m hoping to get out of her soon ” [ 23 ]. Viewing chemotherapy as part of their treatment regimen and having awareness of negative consequences of non-adherence to chemotherapy encouraged them to adhere chemotherapy: “ If I do not take medicine, I do not think I will be able to live ” [ 28 ]. Adhering chemotherapy was described as a survivor tool which helped people to control cancer-related symptoms: “ it is what is going to restore me. If it wasn’t this treatment, maybe I wasn’t here talking to you. So, I have to focus in what he is going to give me, life !” [ 27 ]. Similarly, people accepted the medical facts and prevent their life from worsening; “ without the treatment, it goes the wrong way. It is hard, but I have accepted it from the beginning, yes. This is how it is. I cannot do anything about it. Just have to accept it ” [ 19 ].

Finding from six studies contributed to this category [ 20 , 21 , 23 , 24 , 25 , 29 ]. Providing support from families and friends most important to the people. Receiving support from family members enhanced a sense responsibility towards their families, as they believed to survive for their family even if suffered: “ yes, I just thought that if something comes back again and I say no, then I have to look my family and friends in the eye and say I could have prevented it, perhaps. Now, if something comes back again, I can say I did everything I could. Cancer is bad enough without someone saying: It’s your own fault!!” [ 29 ]. Also, emotional support from family was described as important in helping and meeting their needs, and through facilitation helped people to adhere chemotherapy: “ people who genuinely mean the support that they’re giving […] just the pure joy on my daughter’s face for helping me. she was there day and night for me if I needed it, and that I think is the main thing not to have someone begrudgingly looking after you ” [ 20 ]. Another study discussed the role family, friends and social media as the best source of support during their treatment to adhere and continue “ I have tons of friends on Facebook, believe it or not, and it’s amazing how many people are supportive in that way, you know, just sending get-well wishes. I can’t imagine going through this like 10 years ago whenever stuff like that wasn’t around ” [ 23 ]. Receiving support from social workers was particularly helpful during chemotherapy in encouraging adherence to the chemotherapy: “ the social worker told me that love is courage. That was a huge encouragement, and I began to encourage myself ” [ 25 ].

Side effects

Findings from five studies informed this category [ 17 , 21 , 22 , 25 , 26 ]. Physical side effects were described by some as the most unpleasure experience: “ the side effects were very uncomfortable. I felt pain, fatigue, nausea, and dizziness that limited my daily activities. Sometimes, I was thinking about not keeping to my chemotherapy schedule due to those side effect ” [ 17 ]. The impact of side effects affected peoples’ ability to maintain their independence and self-care: “ I couldn’t walk because I didn’t have the energy, but I wouldn’t have dared to go out because the diarrhoea was so bad. Sometimes I couldn’t even get to the toilet; that’s very embarrassing because you feel like you’re a baby ” [ 26 ]. Some perceived that this resulted in being unable to perform independently: “ I was incredibly weak and then you still have to do things and you can’t manage it ” [ 22 ]. These side effect also decreased their quality of life “ I felt nauseated whenever I smelled food. I simply had no appetite when food was placed in front of me. I lost my sense of taste. Food had no taste anymore ” [ 25 ]. Although, the side effects impacted on patients´ leisure and free-time activities, they continued to undertake treatment: “ I had to give up doing the things I liked the most, such as going for walks or going to the beach. Routines, daily life in general were affected ” [ 21 ].

Concern about efficacy

Findings form four studies informed this category [ 17 , 18 , 24 , 28 ]. Although being concerned about the efficacy of the chemotherapy and whether or not chemotherapy treatment would be successful, one participant who undertook treatment described: “the efficacy is not so great. It is said to expect about 10% improvement, but I assume that it declines over time ” [ 28 ]. People were worried that such treatment could not cure their cancer and that their body suffered more due to the disease: “ I was really worried about my treatment effectiveness, and I will die shortly ” [ 17 ]. There were doubts expressed about remaining the cancer in the body after chemotherapy: “ there’s always sort of hidden worries in there that whilst they’re not actually taking the tumour away, then you’re wondering whether it’s getting bigger or what’s happening to it, whether it’s spreading or whatever, you know ” [ 24 ]. Uncertainty around the outcome of such treatment, or whether recovering from cancer or not was described as: “it makes you feel confused. You don’t know whether you are going to get better or else whether the illness is going to drag along further” [ 18 ].

Unmet information needs

Five studies contributed to this category [ 17 , 21 , 22 , 23 , 26 ]. The need for adequate information to assimilate information and provide more clarity when discussing complex information were described. Providing information from clinicians was described as minimal: “they explain everything to you and show you the statistics, then you’re supposed to take it all on-board. You could probably go a little bit slower with the different kinds of chemo and grappling with these statistics” [ 26 ]. People also used the internet search to gain information about their cancer or treatments, “I’ve done it (consult google), but I stopped right away because there’s so much information and you don’t know whether it’s true or not ” [ 21 ]. The need to receive from their clinicians to obtain clearer information was described as” I look a lot of stuff up online because it is not explained to me by the team here at the hospital ” [ 23 ]. Feeling overwhelmed with the volume of information could inhibit people to gain a better understanding of chemotherapy treatment and its relevant information: “ you don’t absorb everything that’s being said and an awful lot of information is given to you ” [ 22 ]. People stated that the need to know more information about their cancer, as they were never dared to ask from their clinicians: “ I am a low educated person and come from a rural area; I just follow the doctor’s advice for my health, and I do not dare to ask anything” [ 17 ].

The purpose of this review was to explore patient’s experiences about the chemotherapy adherence. After finalizing the searches, thirteen papers were included in this review that met the inclusion criteria.

The findings of the present review suggest that social support is a crucial element in people’s positive experiences of adhering to chemotherapy. Such support can lead to positive outcomes by providing consistent and timely assistance from family members or healthcare professionals, who play vital roles in maintaining chemotherapy adherence [ 30 ]. Consistent with our study, previous research has highlighted the significant role of family members in offering emotional and physical support, which helps individuals cope better with chemotherapy treatment [ 31 , 32 ]. However, while receiving support from family members reinforces individuals’ sense of responsibility in managing their treatment and their family, it also instils a desire to survive cancer and undergo chemotherapy. One study found that assuming self-responsibility empowers patients undergoing chemotherapy, as they feel a sense of control over their therapy and are less dependent on family members or healthcare professionals [ 33 ]. A qualitative systematic review reported that support from family members enables patients to become more proactive and effective in adhering to their treatment plan [ 34 ]. This review highlights the importance of maintaining a positive outlook and rational beliefs as essential components of chemotherapy adherence. Positive thinking helps individuals recognize their role in chemotherapy treatment and cope more effectively with their illness by accepting it as part of their treatment regimen and viewing it as a tool for survival. This finding is supported by previous studies indicating that positivity and positive affirmations play critical roles in helping individuals adapt to their reality and construct attitudes conducive to chemotherapy adherence [ 35 , 36 ]. Similarly, maintaining a positive mindset can foster more favourable thoughts regarding chemotherapy adherence, ultimately enhancing adherence and overall well-being [ 37 ].

This review identified side effects as a significant negative aspect of the chemotherapy experience, with individuals expressing concerns about how these side effects affected their ability to perform personal self-care tasks and maintain independent living in their daily lives. Previous studies have shown that participants with a history of chemotherapy drug side effects were less likely to adhere to their treatment regimen due to worsening symptoms, which increased the burden of medication side effects [ 38 , 39 ]. For instance, cancer patients who experienced minimal side effects from chemotherapy were at least 3.5 times more likely to adhere to their treatment plan compared to those who experienced side effects [ 40 ]. Despite experiencing side effects, patients were generally willing to accept and adhere to their treatment program, although one study in this review indicated that side effects made some patients unable to maintain treatment adherence. Side effects also decreased quality of life and imposed restrictions on lifestyle, as seen in another study where adverse effects limited individuals in fulfilling daily commitments and returning to normal levels of functioning [ 41 ]. Additionally, unmet needs regarding information on patients’ needs and expectations were common. Healthcare professionals were considered the most important source of information, followed by consultation with the internet. Providing information from healthcare professionals, particularly nurses, can support patients effectively and reinforce treatment adherence [ 42 , 43 ]. Chemotherapy patients often preferred to base their decisions on the recommendations of their care providers and required adequate information retention. Related studies have highlighted that unmet needs among cancer patients are known factors associated with chemotherapy adherence, emphasizing the importance of providing precise information and delivering it by healthcare professionals to improve adherence [ 44 , 45 ]. Doubts about the efficacy of chemotherapy treatment, as the disease may remain latent, were considered negative experiences. Despite these doubts, patients continued their treatment, echoing findings from a study where doubts regarding efficacy were identified as a main concern for chemotherapy adherence. Further research is needed to understand how doubts about treatment efficacy can still encourage patients to adhere to chemotherapy treatment.

Strengths and limitation

The strength of this review lies in its comprehensive search strategy across databases to select appropriate articles. Additionally, the use of JBI guidelines provided a comprehensive and rigorous methodological approach in conducting this review. However, the exclusion of non-English studies, quantitative studies, and studies involving adolescents and children may limit the generalizability of the findings. Furthermore, this review focuses solely on chemotherapy treatment and does not encompass other types of cancer treatment.

Conclusion and practical implications

Based on the discussion of the findings, it is evident that maintaining a positive mentality and receiving social support can enhance chemotherapy adherence. Conversely, experiencing treatment side effects, concerns about efficacy, and unmet information needs may lead to lower adherence. These findings present an opportunity for healthcare professionals, particularly nurses, to develop standardized approaches aimed at facilitating chemotherapy treatment adherence, with a focus on providing comprehensive information. By assessing patients’ needs, healthcare professionals can tailor approaches to promote chemotherapy adherence and improve the survival rates of people living with cancer. Raising awareness and providing education about cancer and chemotherapy treatment can enhance patients’ understanding of the disease and its treatment options. Utilizing videos and reading materials in outpatient clinics and pharmacy settings can broaden the reach of educational efforts. Policy makers and healthcare providers can collaborate to develop sustainable patient education models to optimize patient outcomes in the context of cancer care. A deeper understanding of individual processes related to chemotherapy adherence is necessary to plan the implementation of interventions effectively. Further research examining the experiences of both adherent and non-adherent patients is essential to gain a comprehensive understanding of this topic.

Data availability

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request. on our submission system as well.

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First author (AR) and second author (ST) conceived the review and the second author oversight for all stages of the review provided by the second author. All authors (AR), (ST), (WG) and (SK) undertook the literature search. Data extraction, screening the included papers and quality appraisal were undertaken by all authors (AR), (ST), (WG) and (SK). First and second authors (AR) and (ST) analysed the data and wrote the first draft of the manuscript and revised the manuscript and all authors (AR), (ST), (WG) and (SK) approved the final version of the manuscript.

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Rashidi, A., Thapa, S., Kahawaththa Palliya Guruge, W. et al. Patient experiences: a qualitative systematic review of chemotherapy adherence. BMC Cancer 24 , 658 (2024). https://doi.org/10.1186/s12885-024-12353-z

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  • Chemotherapy treatment
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  • Qualitative research
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ISSN: 1471-2407

reviewing the literature in qualitative research

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.

© 2016 Sigma Theta Tau International.

  • Evidence-Based Practice / standards*
  • Information Seeking Behavior
  • Nursing / methods
  • Qualitative Research*
  • Research Design / standards*
  • Systematic Reviews as Topic*
  • Writing / standards*
  • Open access
  • Published: 29 May 2024

The implementation of person-centred plans in the community-care sector: a qualitative study of organizations in Ontario, Canada

  • Samina Idrees 1 ,
  • Gillian Young 1 ,
  • Brian Dunne 2 ,
  • Donnie Antony 2 ,
  • Leslie Meredith 1 &
  • Maria Mathews 1  

BMC Health Services Research volume  24 , Article number:  680 ( 2024 ) Cite this article

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Person-centred planning refers to a model of care in which programs and services are developed in collaboration with persons receiving care (i.e., persons-supported) and tailored to their unique needs and goals. In recent decades, governments around the world have enacted policies requiring community-care agencies to adopt an individualized or person-centred approach to service delivery. Although regional mandates provide a framework for directing care, it is unclear how this guidance is implemented in practice given the diversity and range of organizations within the sector. This study aims to address a gap in the literature by describing how person-centred care plans are implemented in community-care organizations.

We conducted semi-structured interviews with administrators from community-care organizations in Ontario, Canada. We asked participants about their organization’s approach to developing and updating person-centred care plans, including relevant supports and barriers. We analyzed the data thematically using a pragmatic, qualitative, descriptive approach.

We interviewed administrators from 12 community-care organizations. We identified three overarching categories or processes related to organizational characteristics and person-centred planning: (1) organizational context, (2) organizational culture, and (3) the design and delivery of person-centred care plans. The context of care and the types of services offered by the organization were directly informed by the needs and characteristics of the population served. The culture of the organization (e.g., their values, attitudes and beliefs surrounding persons-supported) was a key influence in the development and implementation of person-centred care plans. Participants described the person-centred planning process as being iterative and collaborative, involving initial and continued consultations with persons-supported and their close family and friends, while also citing implementation challenges in cases where persons had difficulty communicating, and in cases where they preferred not to have a formal plan in place.

Conclusions

The person-centred planning process is largely informed by organizational context and culture. There are ongoing challenges in the implementation of person-centred care plans, highlighting a gap between policy and practice and suggesting a need for comprehensive guidance and enhanced adaptability in current regulations. Policymakers, administrators, and service providers can leverage these insights to refine policies, advocating for inclusive, flexible approaches that better align with diverse community needs.

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The community-care sector facilitates the coordination and administration of in-home and community-based health and social services. Community-care services include supports for independent living, residential services, complex medical care, and community-participation services to support personal and professional goals (e.g., education, employment, and recreation-based supports) [ 1 ]. There is substantial heterogeneity in the clinical and demographic characteristics of the community-care population, including individuals with physical and developmental disabilities, and complex medical needs [ 2 ]. We refer to the individuals served by these organizations as ‘persons-supported’ in line with person-first language conventions [ 3 , 4 ].

In recent decades, governments across the world have enacted policies requiring community-care agencies to adopt an individualized or person-centred approach to service delivery [ 5 , 6 , 7 , 8 ]. Person-centred care encompasses a broad framework designed to direct care delivery, as opposed to a singular standardized process. In the context of community-care, person-centred planning refers to a model of care provision in which programs and services are developed in collaboration with persons-supported and tailored to their unique needs and desired outcomes [ 9 , 10 ].

In Ontario, Canada, community-care services are funded by the Ministry of Health (MOH) and the Ministry of Children, Community and Social Services (MCCSS). Service agreements between these ministries and individual agencies can be complex and contingent on different factors including compliance with a number of regulatory items and policies [ 7 , 11 ]. MOH provides funding for health-based services including in-home physiotherapy, respiratory therapy, and personal support services, among several others. MOH funds Home and Community Care Support Services (HCCSS), a network of organizations responsible for coordinating the delivery of in-home and community-based care in the province. MCCSS funds social service agencies including those providing community participation and residential support for people with intellectual and developmental disabilities (IDDs).

Several tools and resources have been developed to aid organizations in providing person-centred care and organizations may differ in their use of these tools and their specific approach. Although regional mandates provide a framework for directing care delivery, it is unclear how this guidance is implemented in practice given the diversity and range of organizations within the sector. In addition, as noted by a recent scoping review, there is limited literature on the implementation process and impact of person-centred planning on individual outcomes [ 12 ]. Using a pragmatic, qualitative, descriptive approach [ 13 ], we outline how community-care organizations enact a person-centred approach to care and the factors that shape their enactment. By describing existing practices in the context of the community-care sector, we aim to provide insight on how to optimize care delivery to improve outcomes and inform current policy. This study is part of a larger, multi-methods project examining the implementation of person-centred care plans in the community-care sector. This project encompasses qualitative interviews with representatives from different community-care organizations, as well as staff and persons-supported at a partner community-care organization. This paper focuses on analyzing data from interviews with representatives from different community-care organizations.

We conducted semi-structured interviews with administrators from community-care organizations in Southwestern Ontario (roughly the Ontario Health West Region) between October 2022 and January 2023. We included community-care organizations funded by MOH or MCCSS. We excluded organizations that did not provide services in Southwestern Ontario. We identified eligible organizations and participants by searching online databases, including community resource lists, as well as through consultation with members of the research team.

We used maximum variation sampling [ 14 ], to recruit participants from organizations with a wide range of characteristics including location (i.e., urban, rural), organization type (i.e., for-profit, not-for-profit), and types of services provided (e.g., residential, recreation, transportation, etc.) We contacted eligible organizations via email, providing them with study information and inviting them to participate. We recruited until the data reached saturation, defined as the point at which there was sufficient data to enable rigorous analysis [ 14 , 15 ].

In each interview, we asked participants about their organization’s approach to developing and updating individual service agreements or person-centred care plans, and the supports and barriers (e.g., organizational, funding, staffing, etc.) that facilitate or hinder the implementation of these plans (Supplementary Material 1 : Interview Guide). We also collected information on relevant participant and organizational characteristics, including participant gender, position, years of experience, organization location, type (i.e., for-profit, not-for-profit), services offered, years in operation, and client load. The interviews were approximately one hour in length and conducted virtually via Zoom (Zoom Video Communications Inc.) or by telephone. The interviews were audio-recorded and transcribed verbatim. Interviewer field notes were also used in data analysis.

We analyzed the data thematically [ 16 ]. The coding process followed a collaborative and multi-step approach. Initially, three members of the research team independently reviewed and coded a selection of transcripts to identify key ideas and patterns in the data, and form a preliminary coding template. We then met to consolidate individual coding efforts. We compared coding of each transcript, resolving conflicts through discussion and consensus. In coding subsequent transcripts and through a series of meetings, we worked together to finalize the codebook to reflect more analytic codes. We used the finalized template to code all interview transcripts in NVivo (QSR International), a software designed to facilitate qualitative data analysis. We refined the codebook on an as-needed basis by incorporating novel insights gleaned from the coding of additional transcripts, reflecting the iterative nature of the analysis.

We increased the robustness of our methodology by pre-testing interview questions, documenting interview and transcription protocols, using experienced interviewers, and confirming meaning with participants in interviews [ 14 , 15 , 16 ]. We kept detailed records of interviews, field notes, and drafts of the coding template. We made efforts to identify negative cases and provided rich descriptions and illustrative quotes [ 17 ]. We included individuals directly involved in the administration of community-care services on our research team. These individuals provided important context and feedback at each stage of the research process.

This study was approved by the research ethics board at Western University. We obtained informed consent from participants prior to the onset of interviews. We maintained confidentiality through secure storage of interview data (e.g., audio recordings), password-protection of sensitive documents, and the de-identification of transcripts.

Positionality

The authors represent a multidisciplinary team of researchers, clinicians, and community-care leaders. The community-care leaders and clinicians on our team provided key practical expertise to inform the development of interview questions and the analysis of study findings.

We interviewed administrators across 12 community-care organizations in Southwestern Ontario. The sample included representatives from seven organizations that received funding from MCCSS, three organizations that received funding from MOH, and two organizations that received funding from both MCCSS and MOH (Table  1 ). Eleven organizations were not-for-profit, one was a for-profit agency. The organizations provided care in rural ( n =  3), urban ( n =  4), or both rural and urban populations ( n =  5). Seven of the 12 participants were women, nine had been working with their organization for more than 11 years, and all had been working in the community-care sector for more than 12 years (Table  2 ).

We identified three key categories or processes relating to organizational characteristics and their impact on the design and delivery of person-centred care plans: (1) organizational context, (2) organizational culture, and (3) the development and implementation of person-centred care plans.

Organizational context

Organizational context refers to the characteristics of persons-supported, and the nature of services provided. Organizational context accounts for the considerable heterogeneity across organizations in the community-care sector and their approach to person-centred care plans.

Populations served

The majority of organizations included in the study supported individuals with IDDs: “all of the people have been identified as having a developmental disability. That’s part of the eligibility criteria for any funded developmental service in Ontario.” [P10]. Participants described how eligibility was ascertained through the referral process: “ the DSO [Developmental Services Ontario] figures all of that out and then refers them to us .” [P08]. These descriptions highlighted a common access point for publicly-funded adult developmental services in the province. Accordingly, these organizations were primarily funded by MCCSS. Other organizations focused on medically complex individuals including those with acquired brain injuries or those unable to access out-patient services due to physical disabilities: “the typical reason for referral is going to be around a physical impairment… But, with this medically complex population, you’re often seeing comorbidities where there may be some cognitive impairment, early dementia.” [P04]. In these organizations, eligibility and referral were usually coordinated by HCCSS. These insights highlighted the diverse characteristics of community-care populations, emphasizing the need to consider both physical and cognitive health challenges in care provision approaches.

Services offered

The characteristics of persons-supported informed the context of care and the type of services offered by the organization. The different dimensions of services offered within this sector include social and medical care, short and long-term care provision, in-home and community-care, and full and part-time care.

Nature of care: social vs. medical

Many organizations serving individuals with IDDs employed a holistic, psychosocial model of care, designed to support all areas of an individual’s life including supports for independent-living, and community-based education, employment, and recreation services to support personal and professional goals: “we support people in their homes, so residential supports. We also support people in the community, to be a part of the community, participate in the community and also to work in the community.” [P06]. These descriptions reflect a comprehensive approach to care, aiming to address needs within and beyond residential settings to promote active participation within the broader community. In contrast, some organizations followed a biomedical model of care, designed to support specific health needs: “We provide all five therapies… physiotherapy, occupational therapy, speech, social work, and nutrition. In some locations we provide visiting nursing, at some locations shift nursing. We have some clinic-nursing… and we provide personal support and home-making services in a number of locations as well.” [P04]. These organizations adopted a more clinically-focused approach to care. In either instance, the care model and the nature of services offered were largely determined by an organization’s mandate including which gaps they aimed to fill within the community. Many organizations described providing a mixture of social and medical care for individuals with complex needs. However, the implementation of care plans could be impacted by the lack of integration between social and medical care sectors, as some participants spoke to the importance of “[integrating] all of the different healthcare sector services… [including] acute care and public health and home and community care and primary care, and mental health and addictions.” [P04].

Duration of care: short-term vs. long-term

The duration of care also varied based on the needs of persons-supported. Organizations serving individuals with IDDs usually offered support across the lifespan: “We support adults with developmental disabilities and we support them from 18 [years] up until the end of their life.” [P06]. Some organizations provided temporary supports aimed at addressing specific health needs: “For therapies – these are all short-term interventions and typically they’re very specific and focused on certain goals. And so, you may get a referral for physiotherapy that is authorized for three visits or five visits” [P04], or crisis situations (e.g., homelessness): “Our services are then brought in to help provide some level of support, guidance, stabilization resource, and once essentially sustainability and positive outcomes are achieved—then our services are immediately withdrawn.” [P12]. One organization employed a model of care with two service streams, an initial rehabilitation stream that was intended to be short-term and an ongoing service stream for individuals requiring continuing support.

In-home vs. community-based care

Many organizations provided in-home care and community-based supports, where residential supports were designed to help individuals lead independent lives, and community-based supports encouraged participation in community activities to further inclusion and address personal and professional goals. One participant spoke about the range of services offered in the home and community:

“There’s probably two big categories of [services we offer]: community support services—so that includes things like adult day programs, assisted living, meals on wheels, transportation, friendly visiting … and things like blood pressure clinics, exercise programs… and then on the other side we do home care services. In the home care basket, we provide personal support, and we also provide social work support.” [P05].

Likewise, another participant spoke in further detail on the types of services that allow individuals to live independently within their homes, or in community-based residential settings (e.g., long-term care facilities):

“We provide accommodation supports to about 100 people living in our community—which means that we will provide support to them in their own homes. So, anywhere from an hour a week to 24 hours a day. And that service can include things from personal care to home management to money management, cooking, cleaning, and being out and about in communities—so community participation. We also provide supports for about 50 people living in long-term care facilities and that is all community participation support. So, minus the last 2 and a half years because of the pandemic, what that means is that a person living in a long-term care facility with a developmental disability can have our support to get out and about for 2 or 3 hours a week, on average.” [P10].

Full-time vs. part-time support

The person-supported’s needs also determined whether they would receive care within their homes and if they would be supported on a full-time (i.e., 24 h a day, 7 days a week) or part-time basis:

“ It really does range from that intensive 24- hour/7 day a week support, which we actually do provide that level of intense support in the family home, if that’s needed. And then, all the way through to just occasional advocacy support and phone check-in.” [P01].

Organizational Culture

Organizational culture was described as a key influence in the development and implementation of person-centred care plans. The culture of the organization includes their perceptions, attitudes and beliefs surrounding persons-supported; their model of care provision; as well as their willingness to evolve and adapt service provision to optimize care delivery.

Perceptions, attitudes, and beliefs regarding persons-supported

Participants described their organization’s view of persons-supported, with many organizations adopting an inclusionary framework where persons-supported were afforded the same rights and dignities as others in the community. This organizational philosophy was described as being deeply intertwined with an organization’s approach to personalizing programs and services:

“…an organization needs to be able to listen to the people who are receiving the service… and support them, to learn more, figure out, articulate, whatever it is, the service or the supports that they need in order to get and move forward with their life.” [P10].

The focus on the person-supported, their needs, likes, and dislikes, was echoed across organizations, with an emphasis on the impact of “culture and trying to embed for each person who delivers service the importance of understanding the individual.” [P05]. Participants also described their organization’s approach to allowing persons-supported to take risks, make mistakes, and live life on their own terms:

“You have to go and venture out and take some [risks]… We try to exercise that philosophy - people with disabilities should have the same rights and responsibilities as other people in the community. Whether that’s birthing or education, getting a job, having a house they can be proud of, accessing community supports, whether that be [a] library or community centre, or service club, whatever that is.” [P03].

Model of care provision

The model of care provision was heavily influenced by the organization’s values and philosophy. Several organizations employed a flexible model of care where supports were developed around the needs, preferences, and desired outcomes of the person-supported:

“…if we don’t offer [the program they want], we certainly build it. Honestly, most of our programs were either created or built by someone coming to us [and] saying ‘I want to do this with my life,’ or …‘my son would like to do art.’” [P02].

Although there were similarities in models across the different organizations, one participant noted that flexibility can be limited in the congregate care setting as staff must tend to the needs of a group as opposed to an individual:

“Our typical plan of operation outside of the congregate setting is we design services around the needs of the person. We don’t ask them to fit into what we need, we build services for what they need. Within the congregate care setting, we have a specific set of rules and regulations for safety and well-being of the other people that are here.” [P11].

Evolving service orientation

In organizations serving individuals with IDDs, many described shifting from program-based services to more individualized and community-based supports: “The goal was always to get people involved in their community and build in some of those natural supports … [we] are looking to support people in their own communities based on their individual plans.” [P07]. One participant described this model as a person-directed approach as opposed to person-centred, citing the limitations of program-based services in meeting individual needs:

“[Persons-supported] couldn’t [do] what they wanted because they were part of a bigger group. We would listen to the bigger group, but if one person didn’t want to go bowling … we couldn’t support them because everybody had to go bowling.” [P06].

The focus on individualized support could potentially lead to increased inclusion for persons-supported in their communities:

“… people go to Tim Horton’s, and if they go every day at 9 they probably, eventually will meet other people that go at 9 o’clock and maybe strike up a conversation and get to know somebody and join a table … and meet people in the community.” [P02].

By creating routines centred on individual preferences, the person-supported becomes a part of a community with shared interests and values.

Person-centred care plans

Community-care organizations enacted a person-centred approach by creating person-centred care plans for each person-supported. Although all participants said their organization provided person-centred services, there was considerable variation in the specific processes for developing, implementing, and updating care plans.

Developing a person-centred care plan

The development of a care plan includes assessment, consultation, and prioritization. The initial development of the care plan usually involved an assessment of an individual’s needs and goals. Participants described agency-specific assessment processes that often incorporated information from service referrals: “ In addition to the material we get from the DSO [Disability Services Ontario] we facilitate the delivery of an intake package specifically for our services. And that intake package helps to further understand the nature and needs of an individual.” [P12]. Agency-specific assessment processes differed by the nature of services provided and the characteristics of the population. However, most organizations included assessments of “not only physical functioning capabilities, but also cognitive.” [P01]. Assessment also included an appraisal of the suitability of the organization’s services. In instances where persons-supported were seeking residential placements or independent-living support, organizations assessed their ability to carry out the activities of daily living:

“[Our internal assessment] is an overview of all areas of their life. From, ‘do they need assistance with baking, cooking, groceries, cleaning, laundry? Is there going to be day program opportunities included in that residential request for placement? What the medical needs are?’” [P02].

In contrast, the person-supported’s community-based activities were primarily informed by their interests and desired outcomes: “We talk about what kinds of goals they want to work on. What kind of outcomes we’re looking for…” [P06].

The development of the care plan also included a consultation phase, involving conversations with the person-supported, their family members, and potentially external care providers: “We would use the application information, we’d use the supports intensity scale, but we’d also spend time with the person and their connections, their family and friends, in their home to figure out what are the kinds of things that this person needs assistance with.” [P10]. Participants described the person-supported’s view as taking precedence in these meetings: “We definitely include the family or [alternate] decision-maker in that plan, but the person-supported ultimately has the final stamp of approval.” [P08]. Many participants also acknowledged the difficulty of identifying and incorporating the person-supported’s view in cases where opinions clash and the person-supported has difficulty communicating and/or is non-verbal: “Some of the people we support are very good at expressing what they want. Some people are not. Some of our staff are really strong in expressing what they support. …And some of the family members are very strong. So you have to be very careful that the [person-supported] is not being lost in the middle of it.” [P06].

Participants also noted that some persons-supported preferred not to have a care plan:

“Some of the people say ‘I hate [the plans] I don’t want to do them’…. we look at it in a different way then. We’ll use graphic art, we’ll use video, we’ll think outside the box to get them to somehow—because at the end of the day when we’re audited by MCCSS every [person-supported] either has to have [a plan]… or there has to be [an approval of] why it wasn’t completed.” [P02].

Plan development may also include a prioritization process, particularly in cases where resources are limited. A person-supported’s goals could be prioritized using different schemas. One participant noted that “the support coordinator takes the cue from the person-supported - … what they’ve identified as ‘have to have’ and ‘nice to have’. … because the ‘have to haves’ are prioritized.” [P09]. Likewise, the person-supported’s preference could also be identified through “[an] exercise, called ‘what’s important for and what’s important to .’” [P06]. This model, based on a Helen Sanderson approach [ 18 ], was described as being helpful in highlighting what is important to the person-supported, as opposed to what others (i.e., friends, family, staff, etc.) feel is important for them.

Several organizations updated care plans throughout the year, to document progress towards goals, adapt to changing needs and plan for future goals: “We revisit the plan periodically through the year. And if they say the goal is done, we may set another goal.” [P06]. Organizations may also change plans to adapt to the person-supported’s changing health status or personal capacity.

Implementing a person-centred care plan

The implementation of care plans differed based on the nature of services provided by the organization. The delivery of health-based or personal support services often involved matching the length and intensity of care with the individual’s needs and capacity:

“Sometimes that is a long time, sometimes it’s a short time, sometimes it’s an intervention that’s needed for a bit, and then the person is able to function.” [P05].

In contrast, the delivery of community-based services involved matching activities and staff by interests: “[if] a person-supported wants to go out and be involved in the music community, then we pull the staff pool in and match them up according to interest.” [P06].

Broad personal goals were broken down into smaller, specific activities. For example, one participant described their organization’s plan in helping a person-supported achieve his professional goal of securing employment:

“[The person-supported] said ‘Okay, I want a job.’ So for three weeks he was matched up with a facilitator. They came up with an action plan in terms of how to get a job, what kind of job he’s looking for, where he wants to go, where he wants to apply, how to conduct an interview. And after three weeks he got a job.” [P09].

Organizations that provided residential services focused on developing independent-living skills. One participant described their organization’s plan to empowering persons-supported by allowing them to make their own financial decisions:

“If one month they’re looking after their own finances, and they’ve overspent. Well, maybe we help them out with a grocery card or something and say ‘okay, next month how are you going to do this?’ [The person-supported may say], ‘well, maybe I’ll put so much money aside each week rather than doing a big grocery shop the first week and not having enough money left at the end of the month.’” [P03].

The participant noted that “a tremendous amount of learning [happens] when a person is allowed to [take] risks and make their own decisions.” [P03].

Likewise, participants representing organizations that provided residential services described tailoring care to the persons-supported’s sleeping schedule and daily routine:

“We develop a plan and tweak it as we go. With [the person-supported] coming to the home, what worked well was, we found that he wanted to sleep in, so we adjusted the [staff] time. We took a look at his [medication] times in the morning… and [changed] his [medication] times. We found that he wanted to sleep [until] later in the day, so he would get up at 10 o’clock, so then instead of having breakfast, lunch, and supper he would just have a bigger brunch. Just really tailoring the plan around the person-supported, and it’s worked out well.” [P08].

These examples highlight how organizational context and culture influence how organizations operationalize person-centred care plans; the same individual may experience different approaches to care and engage in different activities depending on the organization they receive services from.

In this paper, we described key elements of the person-centred planning process across different community-care organizations in Southwestern Ontario. We also identified that the context and culture of an organization play a central role in informing the process by which services are personalized to an individual’s needs. These findings shed light on the diversity of factors that influence the implementation of person-centred care plans and the degree to which organizations are able to address medical and social needs in an integrated fashion. They also inform future evaluations of person and system-related outcomes of person-centred planning.

There are regulations around individualizing services delivered by community-care organizations, whereby care providers must allow persons-supported to participate in the development and evaluation of their care plans. HCCSS or MOH-funded services are largely focused on in-home rehabilitation or medical care. In contrast, MCCSS-funded organizations often focus on developing independent living skills or promoting community participation, thus highlighting the role of the funding agency in determining organizational context as well as the nature of services and personalization of care plans.

We also identified organizational culture as a key influence in the person-centred planning process. In previous reports, organizational culture, and specifically the way in which staff perceive and view persons-supported and their decision-making capabilities can impact the effective delivery of person-centred care [ 19 ]. Staff support, including their commitment to persons-supported and the person-centred process, has been regarded as one of the most powerful predictors of positive outcomes and goal attainment in the developmental services sector [ 20 , 21 ]. Moreover, in order to be successful, commitment to this process should extend across all levels of the organization, be fully integrated into organizational service delivery, and be reflected in organizational philosophy, values and views of persons-supported [ 22 , 23 , 24 ].

MCCSS mandates that agencies serving individuals with IDDs develop an individual service plan (ISP) for each person-supported, one “that address[es] the person’s goals, preferences and needs.” [ 7 ]. We reference ISPs as person-centred care plans, as is in line with the view of participants in interviews. There are a series of checklists designed to measure compliance with these policies, and the process is iterative, with mandated annual reviews of care plans and active participation by the person-supported [ 25 ]. In our study, the agencies funded by MCCSS adhered to the general framework outlined by these regulations and informed service delivery accordingly. However, participants also described areas for improvement with respect to the implementation of these policies in practice. These policies, while well-intentioned, may imply a one-size-fits-all approach and appear more as an administrative exercise as opposed to a meaningful endeavor designed to optimize care. Participants spoke about individuals who preferred not to have an ISP, and how that in and of itself is a person-centred approach, respecting the person’s wishes. Additionally, we heard about how the goal-setting process may not be realistic as it can be perceived as unnatural to have goals at each point in one’s life. Moreover, participants noted challenges in implementing person-centred care in shared residential settings (e.g., group homes) or in cases where persons-supported had difficulty communicating.

Prior research indicates that individuals living in semi-independent settings fare better across several quality-of-life measures relative to individuals living in group homes, including decreased social dissatisfaction, increased community participation, increased participation in activities of daily living, and increased empowerment [ 26 ]. Furthermore, a recent study by İsvan et al. (2023) found that individuals living in the community (e.g., own home, family home, or foster home) exhibit greater autonomy in making everyday and life decisions, and greater satisfaction with their inclusion in the community [ 27 ]. These findings may be indicative of a reduced focus on person-centred care plan development and implementation in congregate care settings, where limited staff capacity can make it difficult to tend to the needs of everyone in the home. However, poor outcomes may also be explained by potentially more complex health challenges or more severe disability in persons-supported living in congregate care settings. The challenges described in our study are consistent with calls to improve the quality of care provided in residential group home settings [ 28 , 29 ].

In line with our findings, previous literature also describes challenges in implementing person-centred planning for individuals who have difficulty communicating or are non-verbal [ 19 , 30 , 31 , 32 ]. Communication has also been identified as a barrier to patient-centred care for adults with IDDs in healthcare settings [ 33 , 34 ]. Other reports have identified a need for increased training and awareness of diverse communication styles (including careful observation of non-verbal cues) to aid staff in including persons-supported in the development of care plans [ 35 , 36 , 37 ]. Importantly, these methods take substantial time which is often limited, and compounded by staffing shortages that are widespread across the sector [ 38 ]. Similar barriers were identified in interviews with staff and persons-supported at a partner community-care agency within our larger project [ 39 ]; other papers from the project examine strategies used by the organization to overcome these barriers.

Limitations

The findings from this study should be interpreted in the context of the following limitations. There is a risk for social desirability bias, whereby participants may feel pressure to present their care plan process in a more positive light due to societal norms and expectations [ 40 ]. Additionally, the experiences and views of community-care organizations may vary by region and organization type (i.e., for-profit vs. not-for-profit). In this study, we limited participation to agencies providing services in Southwestern Ontario and we were only able to interview one for-profit agency, despite concerted recruitment efforts. Consequently, we may not have fully captured how financial pressures, or different contextual and cultural components of an organization impact their implementation of care plans.

The person-centred planning process in community-care organizations is largely informed by the characteristics of the population served and the nature of services offered (i.e., organizational context). This process usually involves initial and continued consultations with persons-supported to tailor plans to their specific needs and desired outcomes. There are ongoing challenges in the implementation of person-centred planning, including a need for increased adaptability and clarity in current regulations. In some areas, there may be benefit to incorporating nuance in the application of policies (e.g., in cases where a person-supported does not want to have a formal plan in place). In other areas, it may be helpful to have increased guidance on how to optimize care delivery to improve outcomes (e.g., in cases where a person-supported has difficulty communicating, or is residing in a group home). Policymakers, administrators, and service providers can leverage these insights to refine policies, advocating for inclusive, flexible approaches that better align with diverse community needs.

Data availability

The datasets generated and analyzed in the current study are not publicly available to maintain participant confidentiality, however access may be granted by the corresponding author upon reasonable request.

Abbreviations

Acquired Brain Injury

Disability Services Ontario

Home and Community Care Support Services

Intellectual and Developmental Disabilities

Individual Service Plan

Ministry of Children, Community and Social Services

Ministry of Health

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Acknowledgements

The authors thank Ruth Armstrong, from PHSS - Medical & Complex Care in Community, for her valuable feedback and support throughout the research process.

This research was funded by the Canadian Institutes of Health Research. The funding agency had no role in the conceptualization, design, data collection, analysis, decision to publish, or preparation of the manuscript.

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S.I. conducted the interviews, developed the coding template, coded the data, thematically analyzed the data, and prepared the manuscript. G.Y. helped develop the coding template, and reviewed and approved the final manuscript. B.D. and D.A. helped conceptualize the study, aided in the interpretation and analysis of study findings, and reviewed and approved the final manuscript. L.M. coordinated research activities, aided in the interpretation and analysis of study findings, and reviewed and approved the final manuscript. M.M. conceptualized the study, supervised its implementation, and was a major contributor in reviewing and editing the manuscript. All authors have read and approved the final manuscript.

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Idrees, S., Young, G., Dunne, B. et al. The implementation of person-centred plans in the community-care sector: a qualitative study of organizations in Ontario, Canada. BMC Health Serv Res 24 , 680 (2024). https://doi.org/10.1186/s12913-024-11089-7

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reviewing the literature in qualitative research

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Early marriage of girls in the context of the COVID-19 pandemic: a literature review

  • Shah Md Atiqul Haq   ORCID: orcid.org/0000-0001-9121-4028 1 ,
  • Mufti Nadimul Quamar Ahmed 2 ,
  • Shamim Al Aziz Lalin 3 ,
  • Arnika Tabassum Arno 1 &
  • Khandaker Jafor Ahmed 4  

Humanities and Social Sciences Communications volume  11 , Article number:  697 ( 2024 ) Cite this article

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The COVID-19 pandemic has had far-reaching consequences worldwide and has also led to significant changes in people’s lifestyles, resulting in an increase in social problems, such as early marriages for girls in different contexts. This study aimed to examine the relationship between the COVID-19 pandemic and early marriage among girls. Our analysis of 36 studies published between 2020 and 2023 shows that the pandemic has accelerated the number of early marriages for girls in several ways. In many countries, early marriages often result from social disintegration, loss of social support, inability to pay for basic needs, prolonged school closures, economic collapse, and parental death due to COVID-19. Although people in different contexts have different opinions about early marriages for girls due to COVID-19, there is evidence that early marriages for girls are sometimes seen as a solution to ease the financial burden and reduce stress for parents. However, there was a significant decline in traditional marriages in developed countries during the COVID-19 pandemic, including the United States, Mexico, Japan, Korea, and Indonesia. Early marriage can have serious consequences for young adolescents, including mental health problems, such as depression, anxiety, low self-esteem, and feelings of powerlessness. Mixed results, such as an increase or decrease in early marriage among girls, indicate a need for detailed contextual empirical research. It is known that actions are being taken to reduce the prevalence of early marriages, especially in developing countries, but certain situations may accelerate or reverse trends in girls’ early marriages because of various social, economic, and cultural influences. This study suggests further consideration of strategic planning for emergencies, such as the COVID-19 pandemic, that people may face again in the future. Therefore, it is necessary to implement appropriate support for abused and mistreated girls by raising awareness to reduce the psychological and physiological consequences of early marriage due to the pandemic in the near past.

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Background and introduction.

The COVID-19 pandemic has been a devastating global catastrophe in recent years (Ahmed et al., 2023 ). This global crisis has had far-reaching consequences for people’s lives in a variety of areas. According to UNESCO ( 2020 ), the pandemic has had a disproportionate impact on children, particularly those living in low-income countries. Due to significant job losses and economic insecurity, the pandemic has increased concerns regarding child labor, early marriage, and child trafficking (Gupta and Jawanda, 2020 ).

Global attempts to end the early marriage of girls are at risk owing to the COVID-19 pandemic. Nigeria, Bangladesh, Ethiopia, Brazil, and India are the five nations in which the pandemic has had a particularly negative effect on early marriages. If action is not taken to address the issue, estimates indicate that the number of child brides in these nations might climb by 3.5 million over the course of the next ten years (Yukich et al., 2021 ). Furthermore, studies conducted in several countries have shown an increase in the number of adolescent marriages (Jones et al., 2020 ; Pathak and Frayer 2020 ). According to UNICEF’s projections, COVID-19 will put an extra 10 million girls at risk of being married as children (UNICEF, 2021a ). According to Save the Children, by 2025, COVID-19 may increase the number of girls at risk of child marriage by 2.5 million (Cousins, 2020 ). Furthermore, the organization assumed that 500,000 more girls, including 200,000 from South Asia, have been married against their will in 2020, with an extra one million child brides facing the risk of pregnancy as a result (Save the Children, 2020 ). The United Nations Sustainable Development Goals (UNDP, 2015 ) call for all governments to work together to eliminate human rights breaches and promote global equality by 2030.

According to UNICEF ( 2023 ), “child marriage” or “early marriage” is the act of getting married to or starting an “informal union” Footnote 1 with a girl or boy who is younger than 18. This practice, commonly defined as marriage before the age of 18, is against the 1989 Convention on the Rights of the Child (CRC) because it takes place before the girl reaches the age at which she is expected to be physically, biologically, and psychologically mature enough to take on the responsibilities of marriage and motherhood.

Early or child marriage is a common occurrence in many nations and is frequently excused by cultural customs that violate the rights of women and girls. As children cannot provide informed permission, it might be considered a type of forced marriage. Within a community, sociological, cultural, and political conditions affect the occurrence of child marriages. The annual rate of child marriages varies by nation and time period, and both industrialized and developing countries face this problem. However, even within a country, the proportion may vary based on the demographic, social, and political situations of various communities (UNICEF, 2005 ). UNICEF ( 2021b ) identified five channels through which the pandemic has accelerated the rate of child marriage: school closures, economic insecurity, healthcare service disruptions, orphanhood due to parental death, and disruptions in programs and services targeting the eradication of child marriage.

The COVID-19 pandemic has resulted in a notable increase in the incidence of early marriages in a number of nations worldwide. It is well acknowledged that South Asia and sub-Saharan Africa have the highest rates of early marriages. Nonetheless, it should be mentioned that people who follow traditional lifestyles frequently marry during or shortly after puberty in places such as the Middle East, North Africa, and some parts of Asia. Furthermore, prepubescent marriages are common in many parts of South Asia, West Africa, and East Africa. In some parts of Eastern Europe and some parts of Latin America, it is common for girls under the age of eighteen to marry (UNICEF, 2001 ). Conversely, it is crucial to understand that not all countries have experienced an equal rise in the number of early marriages; therefore, this trend has not been widespread. The number of weddings during the pandemic has decreased in comparison to pre-pandemic times in a number of nations, including Korea (Kim and Kim, 2021 ), Japan (Ghaznavi et al., 2022 ), Indonesia (Nursetiawati et al., 2022 ), Mexico (Hoehn-Velasco et al., 2023 ), and the USA (Manning and Payne, 2021 ).

This study aims to examine how COVID-19 contributes to the early marriage of girls in particular and what factors are involved in the increase or decrease in marriages due to the effects of the pandemic in different regions, including Nigeria and Bangladesh. This study draws on current published studies and illustrates these links. Synthesizing the many results demonstrating the convergence and divergence of COVID-19’s influence on early marriage from research conducted in different contexts would guide policymakers and help them prevent an increase in early marriages should a similar pandemic arise in the future. The results of this study will help to understand population dynamics, which require a detailed study based on a large dataset of population surveys and COVID-19 infections. The main findings of this study can help policymakers understand how COVID-19 leads to early marriage and negatively affects girls’ mental health. The study also suggests how to ensure support for young girls during critical periods and increase counseling for their mental well-being.

This paper is organized as follows: the section “Background and introduction” presents the background and introduction, and the section “Methodology” presents the methodology. Section “Nexus of COVID-19 pandemic and early marriage” provides an overview of the global scenario of early marriage and its associated factors. This section also discuss the relationship between early marriage and the COVID-19 pandemic, with two important subsections. The first subsection explores how the COVID-19 pandemic has led to marriages among young people worldwide. The second subsection examines how the pandemic has slowed down young marriages worldwide. Section “Mental health status of early married girls” briefly discusses the impact of early marriage on girls’ mental health during the pandemic period. Next, in the section “Global scenarios of early marriage and associated factors” we briefly summarizes both developed and developing countires experiences of marriage along with their socio-cultural perspectives. Finally, we end with a “Concluding discussion”section where we summarized our findings with other relevant literature. We also acknowledge some limitations of our study and suggest areas for future research.

Methodology

Searching for relevant articles.

In this research, we sought to investigate the global impact of COVID-19 on early marriages. To this end, we utilized reputable databases, such as Scopus, Google Scholar, and Web of Science, which offer diverse perspectives on contemporary issues (Malinen, 2015 ) and have been employed in numerous previous studies (Ahmed et al., 2022 ; Haq et al., 2021 ; Wan et al., 2021 ). Our search strategy primarily entailed employing keywords such as “COVID-19 and early marriage”, “marriage during COVID-19”, “child marriage during the pandemic”, and “COVID-19 and child marriage”.

Inclusion and exclusion criteria and final article selection

The participating authors independently searched for relevant articles in the databases, using specific keywords. The search was performed in online libraries, and 70 articles that focused on the link between COVID-19 and early marriage in any country were identified as potentially relevant to the study. These articles were downloaded and reviewed for abstracts and full text, with strict adherence to the inclusion criteria of this study. In both the abstract and full text, we examined two main aspects: (a) the impact of COVID-19 on the prevalence of early or child marriage, and (b) the characteristics or variables associated with COVID-19 that influence the occurrence of early or child marriage. Initially, we sought solutions to these inquiries in the abstract. If we discovered they were not present, we examined the full text. Only peer-reviewed English articles published between 2020 and early 2023 were considered, and those that found no link between COVID-19 and early marriage were excluded. Moreover, editorials, letters, meeting reports, and non-English studies were excluded to avoid complications and confusion related to translations. Following the selection process, 36 peer-reviewed articles in academic journals were included in the literature review. The article selection process used in this study is illustrated in Fig. 1 .

figure 1

Selection process of articles included in this review.

Nexus of COVID-19 pandemic and early marriage

The COVID-19 pandemic has resulted in the widespread closure of schools, which has significantly contributed to an increase in child marriages during this period. Research conducted by Jones et al. ( 2020 ) shows that girls who do not attend school are more likely to accept marriage proposals from their guardians, whereas those who attend school are more likely to resist such arrangements with the support of their peers and educators. This finding is corroborated by the findings of the BRAC ( 2020 ).

Another concern is the growing fear among the population due to rising incidents of rape and other forms of violence against women (Sifat, 2020 ). With schools closed, young men in the area may resort to verbal harassment or even violent assault to pass the time. As a result, many families opt to marry their daughters to keep them safe, rather than seek justice for sexual assault. The research conducted by Paul and Mondal ( 2020 ) supports this observation.

The COVID-19 pandemic has led to a decrease in the monitoring of child marriages as local government personnel are preoccupied with related matters. Mahato ( 2016 ) identifies several factors contributing to child marriage in Nepalese society, such as a lack of education, inadequate access to information, and a fear of remaining unmarried. Similarly, Khanom and Islam Laskar ( 2015 ) linked factors such as low parental education, social norms, and adolescent cell phone and Internet use to the increase in child marriage in the Assam Province of India.

Existing literature suggests that financial hardship during the COVID-19 pandemic can both hasten and delay marriages. When a family struggles to meet their basic needs, girls may marry to alleviate financial pressure (Bahl et al., 2021 ; Chowdhury, 2021 ; Deane, 2021 ; Rahiem, 2021 ; Baird et al., 2022 ). Conversely, economic pressure caused by financial difficulties may delay marriages (Banati et al., 2020 ; Kim and Kim, 2021 ). Furthermore, the death of parents due to the virus has led some couples to marry for the sake of their children’s safety and security, with the spouse assuming a guardian role for orphans (Deane, 2021 ).

According to Esho et al. ( 2022 ), the COVID-19 pandemic has had the effect of accelerated marriages owing to a variety of factors. The financial conditions of many families were disrupted by the pandemic, which increased the likelihood of early forced marriage of girls to reduce family burden (Bahl et al., 2021 ; Chowdhury, 2021 ; Rahiem, 2021 ; Deane, 2021 ; Baird et al., 2022 ; Banati et al., 2020 ). As COVID-19 generated financial problems, families were eager to marry off their sons for dowry (Musa et al., 2021 ). The same factor also decelerated the marriages of males, as their marriage would increase family burden (Banati et al., 2020 ; Kim and Kim, 2021 ). Deane ( 2021 ), Amin et al. ( 2020 ), Musa et al. ( 2021 ), Carter et al. ( 2022 ), and Esho et al. ( 2022 ) found that long-term school closures are contributing factors to early marriage. Additionally, the deaths of parents during the pandemic have caused children to marry early to ensure their security (Deane, 2021 ). Raheim ( 2021 ) and McNulty et al. ( 2023 ) explored marriage as a strategy for escaping from boredom, stress, studying, household tasks, and loneliness and found that young people were willing to marry during the COVID-19 pandemic.

Prior to the COVID-19 pandemic, intimate couples tended to marry quickly to maintain their relationships during unstable times (Komura and Ogawa, 2022 ). Furthermore, a lack of social support and these laws have contributed to an increase in the marriage rate during the pandemic (Jones et al., 2020 ; Rahiem, 2021 ; Banati et al., 2020 ; Esho et al., 2022 ; Deane, 2021 ; Bahl et al., 2021 ; Musa et al., 2021 ). Factors that decrease the marriage rate include limitations on wedding services (Wagner et al., 2020 ; Kim and Kim, 2021 ; Nursetiawati et al., 2022 ), restrictions on public gatherings (Kim and Kim, 2021 ), closure of wedding venues (Wagner et al., 2020 ; Kim and Kim, 2021 ; Komura and Ogawa, 2022 ), and economic breakdown of families (Kim and Kim, 2021 ; Banati et al., 2020 ).

The following sections describe how the COVID-19 pandemic has affected early marriages worldwide.

COVID-19 accelerated the marriages of young

The ongoing global COVID-19 pandemic has led to an increase in the number of cases of early marriage, as per the research conducted by Esho et al. ( 2022 ). The crisis has exacerbated various social and economic factors that influence early marriage and has opened new avenues for children and early marriages, as per Deane ( 2021 ). Rahiem ( 2021 ) highlighted that financial concerns are a significant reason behind early marriage during the pandemic, as guardians marry off their children at younger ages because of the belief that marriage provides an escape from the boredom and stress of being at home during the pandemic. Additionally, traditional laws, peer pressure, and a lack of knowledge about the consequences of early marriage are other factors that have contributed to the rise in early marriage during the pandemic.

Candel and Jitaru ( 2021 ) state that the pandemic has affected the desire to enter into a marital relationship, with concerns about COVID-19 impacting the stigma associated with being single and increasing the awareness of the importance of stability and familial ties. For example, prior to the onset of the COVID-19 pandemic, there was a prevailing belief among many individuals that being unmarried did not necessarily indicate a state of unhappiness. It is not a matter that necessitates resolution. It is indeed an exceptional opportunity to bring joy to someone’s life. On the contrary, being married entails prioritizing the well-being of others over one’s happiness. Amidst the COVID-19 pandemic, numerous individuals modified their beliefs as they recognized that unmarried individuals were considered lacking, isolated, and unhappy, while marriage was granted more fulfillment and social status. More importantly, deep interpersonal relationships during the early stages of the pandemic provided a framework for self-affirmation and emotional elevation. Couples who perceived their lives to be in danger due to the pandemic understood the value of the family and the sharing of risks, which influenced their decision to marry during the crisis, as per Komura and Ogawa ( 2022 ).

Before the COVID outbreak, teenagers spent an excessive amount of time with friends. However, during the pandemic, adolescents communicated and engaged only online. Some teenagers decided to marry during the pandemic due to loneliness, as per Rahiem ( 2021 ).

Adolescents have historically resorted to marriage as a means of escaping household chores and academic responsibilities, a phenomenon observed by Rahiem ( 2021 ). McNulty et al. ( 2023 ) further highlighted that acute stressors have been found to be correlated with a higher likelihood of marriage and increased satisfaction. This may be attributed to the fact that stress can prompt individuals to rely on their natural behaviors, which may be advantageous for achieving a state of happiness and well-being.

The following sections discuss how COVID-19 promotes early marriage in numerous ways.

Interruptions to schooling

Paul and Mondal ( 2020 ) cautioned that the probability of child marriage, mistreatment, sexual assault, and domestic violence would rise if educational institutions, such as elementary schools and high schools, were forced to shut down during this unfortunate situation. The ongoing closure of schools continues to have a detrimental effect, as noted by Amin et al. ( 2020 ). COVID-19-related school closures have affected the education of over 1.6 billion children globally, as reported by Musa et al. ( 2021 ). Moreover, school closures in the Democratic Republic of Congo have increased the risk of early marriage for females, as seen in studies by Deane ( 2021 ), Carter et al. ( 2022 ), and Esho et al. ( 2022 ).

Owing to the COVID-19 pandemic, the teaching and learning process has undergone significant changes that have proven challenging to implement remotely. Consequently, parents are increasingly expected to explain the learning process to their children, with many doing so in a frustrating manner. In particular, high school seniors may choose to tie the knot because of their frustration with online classes, unwavering trust in their partners, and overall dissatisfaction with their lives (Rahiem, 2021 ). Moreover, the COVID-19 pandemic has disrupted school systems and exacerbated educational inequality by reducing Opportunities and resources for disadvantaged children, thereby increasing the likelihood of early marriages (Deane, 2021 ). UNICEF estimates that the probability of marriage due to school closures and dropouts is 27.5% annually, increasing by 25% each time a school is closed (Musa et al., 2021 ).

Some young people marry to avoid taking online courses as they lack the necessary technology or face other barriers to accessing online education (Rahiem, 2021 ). Parents may also lack the financial resources to support their daughters’ schooling because of the economic loss caused by the pandemic (Chowdhury, 2021 ). Teachers often cite teenage girls’ marriages as the primary reason for their absence during school closures (Carter et al., 2022 ). In a study by Amin et al. ( 2020 ), one in ten girls indicated that they might not return to school after it reopened because of factors such as learning gaps, financial difficulties at home, and marriage. The most frequently cited factor by Ethiopians, who believed that the number of child-forced marriage cases was rising during the pandemic, was individuals spending more time at home, including potential victims of child-forced marriage (80%) (Esho et al., 2022 ).

Financial difficulties

The financial impact of COVID-19 on families (Deane, 2021 ; Rahiem, 2021 ) has led to the perception that marriage could alleviate financial difficulties (Bahl et al., 2021 ; Chowdhury, 2021 ; Rahiem, 2021 ). Many families face financial hardship, making it difficult for parents to afford to send their children to school (Rahiem, 2021 ). Economic challenges in impoverished families pose a risk and play a significant role in marrying young girls to ease the financial burden on the family and provide a better future for their offspring (Mehra et al., 2018 ). Additionally, financial hardships resulting from COVID-19 led many girls to marry young people, and many parents believed that education was a waste of money. Parents and girls believed that marriage would improve economic prospects and the overall quality of life. The economic consequences of COVID-19, including reduced income, job loss, and travel restrictions, have contributed to household poverty and increased economic insecurity, which may hinder parents’ ability to meet their children’s needs (Deane, 2021 ). Many teenagers reported that their families experienced negative economic shocks due to COVID-19, such as the inability to afford necessities or job loss (Baird et al., 2022 ). These changes have resulted in decreased well-being outcomes in mental health, hunger, and financial management (Baird et al., 2022 ). The pandemic has exacerbated the difficulties faced by girls, making the situation more challenging (Musa et al., 2021 ). For instance, the financial crisis caused by COVID-19 has led to an increase in weddings among Syrian women (Banati et al., 2020 ).

The demise of a parent

One contributing factor to adolescent females getting married during the pandemic is the death of a parent. Mangeli et al. ( 2017 ) find that young people marry early to settle family issues and contribute to the family’s financial stability after the loss of a parent. McDougal et al. ( 2018 ) also noted that adolescent girls who have experienced the loss of a parent are more likely to marry at a young age in search of a loving and supportive partner. Additionally, some local customs and beliefs encourage couples to marry and start families at a young age after the death of their parents (Rahiem, 2021 ). A study by Deane ( 2021 ) found that the likelihood of a female orphan dropping out of school to care for younger siblings or being married increases after losing both parents, as close relatives may find it difficult to support them. This increases the likelihood of female orphans marrying at a younger age. Furthermore, orphaned females were more likely to be married than orphaned males.

Malfunctions in awareness programs

Parents reportedly exert pressure on their daughters to marry even in the early stages of adolescence. This trend can be attributed, in part, to the fact that there are fewer local government officials and teachers around, as many have returned to their hometowns (Banati et al., 2020 ). Additionally, the lack of safe spaces and protection for girls, which are typically provided by institutions and rescue centers, may contribute to the rise in child-forced marriages (Esho et al., 2022 ). The scarcity of local government representatives is another significant factor that increases the likelihood of child marriages (Jones et al., 2020 ). Adolescent males and girls in Ethiopia stated that they felt more pressure to marry because of the absence of educational institutions, particularly during the regular marriage season in three of the six towns where the study was conducted (Banati et al., 2020 ). Consequently, during the pandemic, monitoring potential child marriages was hindered, and adolescent girls lost their important roles in educational institutions for sharing information against forced marriages.

Anti-child marriage campaigns in India were halted during the lockdown period. Research indicates that a one-year delay in anti-child marriage campaigns globally might result in 13 million additional child marriages worldwide between 2020 and 2030 due to the economic slump and other factors (Bahl et al., 2021 ). The pandemic created two additional reasons for child marriage. Girls and women may find it challenging to access programs and services designed to prevent child marriages because of pandemic-related transportation restrictions and social exclusion (Deane, 2021 ). In Nigeria and other parts of the world, the pandemic has also impacted organizations’ efforts to prevent the practice of early marriage. The COVID-19 outbreak interferes with the efforts of numerous groups working at the local level to end child marriage while exacerbating many of the complex issues that cause it (Musa et al., 2021 ). Local people believe that attaining puberty enables one to enter a marriage relationship legally. Parents with limited education are often in the dark regarding the long-term effects of child marriage (Rahiem, 2021 ).

COVID-19 reduces the marriage rates

A decline in marriage rates during the COVID-19 pandemic has been observed in Korea, Japan, Indonesia, Mexico, and the USA (Wagner et al., 2020 ; Manning and Payne, 2021 ; Kim and Kim, 2021 ; Ghaznavi et al., 2022 ; Nursetiawati et al., 2022 ; Hoehn-Velasco et al., 2023 ). Restrictions on wedding services were put in place with the aim of reducing the crowd size and subsequently limiting the transmission of COVID-19 (Wagner et al., 2020 ; Kim and Kim, 2021 ; Nursetiawati et al., 2022 ). The pandemic has disrupted wedding plans by closing venues, restricting public transportation, and employing other measures. Social isolation and lockdown measures, although varying in scope, have also contributed to delays in wedding plans (Kim and Kim, 2021 ; Wagner et al., 2020 ). Some weddings have been postponed until the pandemic is over, whereas others may never take place because of concerns about exposing guests to health risks (Hoehn-Velasco et al., 2023 ). Business closures have forced many couples to postpone their marriages, with only essential services exempt. The filing of marriage certificates may also be delayed if the ceremony is postponed or cancelled, as this document is typically submitted prior to the wedding (Komura and Ogawa, 2022 ).

Due to concerns surrounding the coronavirus, engaged couples may choose to cancel or postpone their weddings (Kim and Kim, 2021 ). For instance, between 2019 and 2020, there was a notable decrease in marriages in the United States (Wagner et al., 2020 ; Candel and Jitaru, 2021 ; Manning and Payne, 2021 ). According to media accounts, the pandemic has led to a decline in marriages in Japan (Ghaznavi et al., 2022 ). The increase in COVID-19 infections caused a 9.6–13.9% decrease in the crude marriage rate in South Korea. In addition, the marriage rate was further reduced in Korea’s provinces with higher infection rates (Kim and Kim, 2021 ). The number of weddings during the pandemic suggests that there was at least a 20% decline in weddings in the Florida, Missouri, and Oregon states of the USA (Manning and Payne, 2021 ). Indonesia postponed marriage ceremonies during the initial phase of the COVID-19 pandemic (Nursetiawati et al., 2022 ). Similarly, marriage rates in Mexico decreased by over 90% in April and May 2020 (Hoehn-Velasco et al., 2023 ). Following the declaration of the emergency in April 2020 and the subsequent request for people to stay home, there was a 10% decline in marriages in Japan (Komura and Ogawa, 2022 ).

Due to economic difficulties such as financial instability caused by job disruption, young couples are increasingly delaying marriage. Studies have shown that a lack of secure employment is the primary reason for postponing marriage (Kim and Kim, 2021 ). Economic crises can also affect marriage rates, as young girls in Lebanon believed that an economic crisis would lead to a decline in their marriage rates. Palestinian and Lebanese boys also reported that economic conditions make it challenging for them to consider marriage and maintain expectations for the future (Banati et al., 2020 ).

Mental health status of early married girls

It is widely recognized that teenage girls are disproportionately affected by the long-term negative consequences of the public health crisis. The difficulties faced during adolescence may contribute to mental health issues, sexual and reproductive health problems, and chronic illnesses later in life (Bosquet et al., 2018 ; Felitti et al., 1998 ; Herrenkohl and Jung, 2016 ; Chari et al., 2017 ; Lang et al., 2010 ). Additionally, married teenagers often feel resentful towards their peers, who have the luxury of spending their days playing. Simultaneously, teenagers are responsible for taking care of their homes and younger siblings, which can exacerbate feelings of depression if not properly managed. Furthermore, teenagers may experience increased anxiety disorders because of their partners’ abusive behavior. Physical violence, such as that experienced in the case of early marriage, can result in mental health issues such as anxiety, low self-esteem, feelings of helplessness, post-traumatic depression, and unhealthy dependence on husbands, some of whom may have abused them.

Physical violence, such as that experienced in the case of early marriage, can result in mental health issues such as anxiety, low self-esteem, feelings of helplessness, post-traumatic depression, and unhealthy dependence on husbands, some of whom may have abused them. The mental health of adolescent girls can be negatively affected by emergency public health measures such as home isolation, social restrictions, and school closures (Shukla et al., 2023 ). School closures or restrictions on extracurricular activities can have significant impacts on children’s daily lives and mental well-being (Ghosh et al., 2020 ; Saha et al., 2023 ). During the pandemic, Indonesian teenagers struggle with academic pressure and parental expectations, and many need more mental and emotional support (Rahiem, 2021 ).

Global scenarios of early marriage and associated factors

Early marriage is a widespread issue that extends beyond official statistics, as it often excludes unauthorized marriages in certain regions and among specific populations (UNICEF, 2001 ). Cultural diversity leads to significant variations in the prevalence of early marriage across different parts of the world. Economic and political conditions have a significant impact on the prevalence of early marriage, which varies greatly between nations. In some Asian countries, marriage is viewed as a religious obligation or societal responsibility, whereas in Western countries, remaining unmarried is widely accepted (Himawan, 2019 ).

Scenario of developed countries

Societal beliefs and perceptions of marriage, including appropriate age and selection methods, shape cultural norms and practices surrounding the institution. These beliefs include the family’s purpose, organization, lifestyle, and responsibilities of its members. The historical evolution of marriage is evident, as the concept and purpose of the family vary significantly across different societies and periods (UNICEF, 2001 ). Historically, marriages in Western Europe have been viewed as financial transactions, with limited emphasis on the individuals involved. Women are often considered property transferred from their fathers to their husbands (UNICEF, 2001 ). However, this perspective has undergone significant change in recent years. The contemporary concept of marriage, commonly referred to as the “romantic” notion, has emerged as the predominant ideal characterized by principles such as mutual consent, passionate affection, and personal fulfillment. While most nations have legal frameworks governing marriage with criteria such as mandatory age and willingness, enforcement of these laws may be lacking.

In developed countries such as Europe, Oceania, and North America, the incidence of early marriage among women is relatively low, with only a small proportion entering matrimony before the age of 18 years. For instance, in the United States, only 4% of women marry before the age of 18, while in Germany, the figure is even lower, at 1% (World Marriage Patterns, 2000 ). It is important to acknowledge that the practice of early marriage is not limited to underdeveloped countries as it is also prevalent in affluent societies. In fact, even Western countries, such as the United Kingdom, Australia, and the United States, are experiencing an increase in the occurrence of child marriages within immigrant communities residing within their territories. Customary practices persist even after relocation, and acceptance of child marriage can persist despite the cultural contexts of the adopted nation (Tahirih Justice Center, 2018 ). Adolescent girls from immigrant families who adhere to the tradition of child marriage may be repatriated to their families’ countries of origin with the intention of being married or traded as spouses to older individuals (Jeffreys, 2009 ).

This section explores the historical and cultural dimensions of Turkey, along with the correlation between COVID-19 and early marriages, in order to gain an understanding of the country’s culture, legislation, and response to the pandemic.

The minimum age for marriage in Turkey is 18, as stipulated in Article 124 of the Turkish Civil Code (TCC) (TCC, art. 124). Nevertheless, according to the TCC, individuals who are 17 years old are allowed to get married as long as they have the consent of their parents. Furthermore, individuals who are 16 years old can obtain judicial approval to marry, but only in unusual circumstances and for compelling reasons (TCC, art. 124). Nevertheless, the TCC does not provide any clarification regarding the specific details of those extraordinary circumstances. In Turkey, where marriage is prevalent, there has been a slight rise in the age at which people first get married and a decrease in marriages involving individuals under the age of 18 over the years.

Conversely, there was a decline in the percentage of women endorsing any form of physical violence. At the same time, there was an increase in the percentage of women asserting their right to reject sexual interaction. During the COVID-19 crisis, there has been an increase in child weddings in Turkey, particularly with Syrian refugees who are marrying their underage daughters to Turkish males (Global Citizen Report supra note 21, 2020). The phenomenon of Syrian families engaging in the sale of their daughters to Turkish males has experienced a surge in prevalence. This practice serves as an economic survival strategy for Syrian families who lack alternative sources of income or means to support their children (Turkey ECPAT Report, supra note 25). Turkish men rationalize the practice of both polygamy and underage marriage among Syrian refugees as appropriate actions during the times of COVID-19, invoking Muslim religious and cultural narratives and traditions (Musawah Thematic Report on Article 16 and Muslim Family Law, 2016).

Sezgin and Punamäki ( 2020 ) highlighted that the early marriage phase and teenage pregnancy pose a threat to women’s physical, mental, and reproductive well-being as well as their economic and social advancement in Turkey. The mental health implications of adolescent pregnancies may be more significant than initially thought. Young-age pregnancy and early marriage are associated with an increased risk of illness and frequent medication use among women (Sezgin and Punamäki, 2020 ). According to Sezgin and Punamäki ( 2020 ), early marriage and adolescent pregnancy can have a serious negative impact on a woman’s reproductive, emotional, and psychological health, as well as economic and social mobility. Teenage pregnancy is a major mental health hazard, but early marriage and adolescent pregnancy also pose risks to the reproductive health of teenagers in Turkey, including cardiovascular diseases. Adolescent pregnancies pose a much greater risk to the mental health of the women involved if they also undergo sexual coercion in their relationships (Sezgin and Punamäki, 2020 ).

Scenario of developing countries

In several countries across Sub-Saharan Africa, over 40% of young women marry before the age of 18, according to the Alan Guttmacher Institute ( 1998 ). In Bangladesh and Afghanistan, more than half of females marry before reaching age 18, as reported by World Marriage Patterns ( 2000 ). While a survey by UNICEF ( 2001 ) showed a lower incidence of early marriage in the Middle East and North Africa region compared to South Asia and Sub-Saharan Africa, approximately 11.5% of adolescent females aged 15–19 in the Caribbean and Latin America regions were married.

The relationship between early marriage and educational attainment is complex. In some cases, financial constraints prevent students from continuing their studies, leading parents to opt for early marriage, particularly for their daughters (Bawono et al., 2019 ). Before entering a relationship or marriage, it is essential to consider one’s financial situation, as couples require a minimum level of financial fulfillment to maintain their relationship (Alola et al., 2020 ; Hoehn-Velasco et al., 2023 ). During economic crises, research suggests that male employment is more negatively affected than female employment, as indicated by the negative correlation between unemployment and marriage rates. However, other studies point to the opposite link, where marriage is seen as protection against difficult economic times (González-Val and Marcén, 2018 ). At such times, women’s families may use their daughters’ marriages to reduce economic burdens, while men’s families may use marriage as a compensating tool by receiving dowries from the bride (Ahmed, 2012 ).

In some instances, instead of imposing penalties on those who breach the law, the marriage is considered null or void. This often places the woman in an unfavorable position, particularly if she has engaged in sexual intercourse or has offspring. The complexity of the situation is further exacerbated by the presence of countries with multiple legal frameworks, including conventional and religious systems, which operate concurrently but frequently experience conflicts or tensions. In countries such as Afghanistan, the process of birth records is irregular, leading to a lack of accurate information regarding the age at which individuals enter marriage (Women Living Under Muslim Laws ( 2013 )). In nations experiencing persistent civil unrest, there are severe indications of social turmoil related to children, including an increase in the number of children living on roadsides, employment of very young individuals, an increase in child slavery and criminal activity, and elevated levels of child abuse and neglect (Black, 2000 ). Available evidence suggests an upward trend in young marriages under these circumstances. In Afghanistan, the prevalence of armed conflict and subsequent militarization has contributed to a notable rise in the occurrence of early marriages among adolescent females (Human Rights Watch, 2012 ). In Sri Lanka, a country plagued by violence, child marriage is primarily motivated by the desire to prevent abduction or forced recruitment into terrorist organizations active in the region (Wijeyesekera, 2011 ).

Considering the COVID-19 pandemic, research has revealed both the positive and negative effects of economic instability on the occurrence of marriage in developing countries. Chowdhury ( 2021 ) posits that financial hardships can expedite the decision to marry, while Kim and Kim ( 2021 ) indicate that they can delay the timing of marriage. The pandemic has had a significant impact on the marriage rate among young women, regardless of their geographical region, religion, or cultural background, which is attributed to the restrictions on public gatherings (Komura and Ogawa, 2022 ).

However, the pandemic has led to an increase in child marriages in developing and underdeveloped areas due to the closure of educational institutions (Deane, 2021 ) and economic deterioration (Bahl et al., 2021 ). Parents’ traditional values often result in arranging marriages for their daughters to alleviate financial strain and reduce the family burden during confinement. According to the Manusher Jonno Foundation ( 2020 ), poverty caused by the epidemic is the primary cause of the recent increase in the prevalence of child marriage. BRAC ( 2020 ) found that 71% of COVID-19-related child weddings occur due to school closures in developing countries. Previous studies have shown that child marriage is more likely to occur after natural catastrophes and public health situations (Paul and Mondal, 2020 ). For example, the Ebola epidemic in West Africa (2014–2016) was associated with a significant increase in child labor, early marriages, teen pregnancies, and illicit sexual activity. The high school dropout rate in Sierra Leone contributed to a rise in teen pregnancies and marriages (Girls not Brides, 2020 ).

Child marriage is a prevalent issue among females in South Asia and sub-Saharan Africa, with the latter exhibiting direst circumstances. Projections indicate that the prevalence of child marriages among women in the region will double by 2050, resulting in sub-Saharan Africa surpassing South Asia as the area with the highest number of young brides. It is anticipated that Nigeria will have the highest prevalence of child marriages among African countries (UNICEF, 2014 ). In five nations—Nigeria, Bangladesh, Ethiopia, Brazil, and India—the pandemic has had a devastating effect on the practice of early marriage. According to estimates, there may be an additional 3.5 million child brides in these nations in the next decade unless something is done to stop the practice (Yukich et al., 2021 ). Considering the historical and cultural context of the country, it is crucial to gain a comprehensive understanding of the child marriage situation.

In this section, we examine the historical and cultural aspects of Nigeria and Bangladesh, as well as the connection between COVID-19 and early marriages, to comprehensively understand the country’s culture, laws, and COVID-19 response.

After nearly 15 years of military governance marked by corruption, inadequate infrastructure, and unequal distribution of resources, Nigeria transitioned to civilian rule in 1999 with the implementation of a new constitution (Population Council, 2004 ). Despite possessing vast human and natural resources, Nigeria continues to face significant economic challenges, making it one of the world’s poorest nations (Population Research Bureau, 2003 ). The AIDS epidemic has had a profound impact on Nigeria, resulting in many affected individuals.

Marriage in Nigeria is governed by three legal systems: Islamic (following the Maliki School of Law), civil (governed by statutory law), and customary (based on traditional law). In the northern region of the country, marriages are typically governed by Islamic law, whereas those in the southern region are regulated by statutory law (Women Living Under Muslim Laws, 2013 ). In cases where couples enter marriage under legal conditions, traditional rules often take precedence over personal matters or issues.

There is no prescribed minimum age for marriage in most common law frameworks throughout Nigeria (Immigration and Refugee Board of Canada, 2006 ). However, the National Policy on individuals within the country prohibits parents from facilitating weddings for girls under the age of 18. Cultural beliefs about underage weddings in Nigeria are influenced by traditional laws (WARDC Women’s Advocates Research and Documentation Centre and WACOL Women’s Aid Collective, 2003 ). Various justifications have been offered to support this cultural practice, including the reduction of promiscuity, promotion of community cohesion and welfare, and religious sanctification of such unions (Bamgbose, 2002 ).

The COVID-19 pandemic has worsened child marriages among vulnerable populations including girls. While it is difficult to measure the exact impact, research and stories indicate that the pandemic has worsened the situation. In Nigeria, child marriage was a problem before COVID-19 (Musa et al., 2021 ), and the closure of schools and increased poverty have made life more difficult for young women. Although the number of girls married during the pandemic is unknown, pre-COVID data suggests a potential negative impact on already-married children in the near future (UNICEF, 2021b ). The harmful effects of marriage on Nigeria’s youth and economic development have long been a concern (Musa et al., 2021 ). The COVID-19 pandemic has exacerbated the situation: many families face extreme financial hardships due to exclusions and pressure to marry off girls. Numerous causes, such as school closures and cases of sexual and gender-based violence, account for the high rate of early marriages in Nigeria (Musa et al., 2021 ).

The COVID-19 lockdown in Nigeria has led to an increase in early marriages and teenage pregnancies among Fulani Footnote 2 females, as many have been forced to abandon their education during the pandemic (BBC NEWS, 2021 ). This issue persists unless authorities and communities take joint action to address it (Musa et al., 2021 ). A study by Yukich et al. ( 2021 ) found that without preventative programming, the impact of the pandemic on child marriages will continue to increase in Nigeria. However, if successful programming is implemented, the situation will revert to its original pattern sometime between the years 2030–2035.

In Bangladeshi society, families face pressure to marry their young daughters before they turn 18. Parents worry about the consequences of not adhering to this norm, and those with steady government or overseas employment are considered ideal candidates. Due to the scarcity of suitable partners, families may view arranging a marriage for a young woman as beneficial if an advantageous opportunity arises. Families may prioritize investing in their children’s future to secure their financial well-being later in life, particularly during times of financial hardships. Cultural norms often result in girls moving away upon marriage, leading families to invest more in boys’ education. Societal restrictions limit girls’ opportunities to gain employment.

Due to the high incidence of sexual misconduct and assault committed against adolescent females, marriage is often seen to reduce the risk of sexual violence experienced by these young women. Additionally, parents and households are increasingly concerned about the dangers associated with technology, including the potential for harassment and unethical behavior, such as extramarital affairs and premarital sex (Ferdous et al., 2019 ).

Bangladesh has achieved notable progress in reducing the prevalence of child marriages in recent decades. This accomplishment was highlighted in 2017 by amendments made to the Child Marriage Restraint Act of 1929. Since the 1980s, legislation has prohibited the marriage of girls under the age of 18 and boys under the age of 21. Recent revisions have focused on implementing preventive measures to discourage, regulate, and document child marriage (The Daily Star, 2023 ).

Despite this progress, the COVID-19 pandemic has caused a surge in teenage weddings in Bangladesh, threatening the commitment to end all forms of child marriages by 2030. A study conducted by Afrin and Zainuddin ( 2021 ) found that the increase in child marriages in Bangladesh is attributable to two pandemic-induced factors: poverty and prolonged school closures. The incidence of child marriages has increased by at least 13% because of school closures necessitated by the pandemic across the country, with many cases going unreported (Hossain et al., 2021 ).

The COVID-19 pandemic has had a significant impact on girls’ physical and emotional well-being, educational opportunities, and the economic conditions of their families and communities. According to the empirical literature and theories on the determinants of child marriage, such disruptions increase girls’ vulnerability to becoming child brides (UNICEF, 2021b ).

Concluding discussion

This study was designed to examine the impact of COVID-19 on early marriages. Our assessment of the literature indicates that the pandemic has had a substantial impact on the marriages of young boys and girls, both favorably and adversely. Marriage and singlehood are seen differently in Asian and Western cultures. Despite the growing Western acceptance of marriage as a matter of choice, many Asian countries, including Indonesia, still regard marriage as a religious or communal responsibility (Himawan, 2019 ).

Research on the correlation between early marriage and intimate partner violence (IPV) in developing countries has yielded mixed findings. Studies conducted in other nations, including Vietnam, have revealed that women are more likely than men to experience early marriage and IPV (Le et al., 2013 ).

The COVID-19 pandemic has led to several factors contributing to the marriage of young male and female children. These include economic hardship within households (Banati et al., 2020 ; Bahl et al., 2021 ; Chowdhury, 2021 ; Musa et al., 2021 ; Rahiem, 2021 ), inability to provide basic necessities (Rahiem, 2021 ; Baird et al., 2022 ), extended school closures (Amin et al., 2020 ; Deane, 2021 ; Musa et al., 2021 ), traditional laws and customs (Jones et al., 2020 ; Rahiem, 2021 ), social breakdown (Banati et al., 2020 ), lack of social support (Jones et al., 2020 ; Bahl et al., 2021 ; Deane, 2021 ; Musa et al., 2021 ), and parental death (Deane, 2021 ; Hossain et al., 2021 ). The pandemic has also directly contributed to some cases of voluntary marriage, such as to escape boredom (Rahiem, 2021 ), to manage stress (McNulty et al., 2023 ), to continue education (Rahiem, 2021 ), to address loneliness (Candel and Jitaru, 2021 ), and to sustain pre-pandemic intimate relationships (Komura and Ogawa, 2022 ). Moreover, the pandemic has negatively impacted the marriage prospects of young males and females by limiting wedding services, restricting public gatherings, closing wedding venues (Wagner et al., 2020 ; Kim and Kim, 2021 ; Komura and Ogawa, 2022 ; Nursetiawati et al., 2022 ), and exacerbating economic hardship (Banati et al., 2020 ; Kim and Kim, 2021 ).

The COVID-19 lockdown has caused the prolonged closure of schools, leading to a lack of interest in studies among teenagers and families facing financial difficulties, resulting in some young children opting for early marriage as an alternative (Rahiem, 2021 ; Chowdhury, 2021 ; Amin et al., 2020 ; Deane, 2021 ). Early marriages were also encouraged by local traditional laws and a desire to sustain pre-COVID romantic relationships (Komura and Ogawa, 2022 ; Candel and Jitaru, 2021 ; Rahiem, 2021 ). During the lockdown, social services and support were unavailable to girls, making it difficult for them to prevent early marriage (Banati et al., 2020 ; Jones et al., 2020 ; Deane, 2021 ; Musa et al., 2021 ; Esho et al., 2022 ). These factors contributed to the increase in the marriage rate during the COVID-19 period.

The pandemic has had a significant impact on the marital relationships of adolescent men and women with both beneficial and adverse consequences. The COVID-19 pandemic has led to several factors, including economic hardship, inability to meet basic needs, prolonged closure of schools, adherence to traditional laws and customs, social disintegration, lack of social support, and the death of parents, which have contributed to the marriage of young boys and girls. The economic and cultural perspectives of developing countries in the South differ from those of developed countries in the North. Unlike in countries in the South, early marriage is prohibited and rarely occurs in Western countries due to social and legal safeguards. Although research indicates a decline in marriage in developed countries during the pandemic, specific age groups experiencing this decline have not been identified. Further research is needed to explore this issue. Asian and Western cultures have different views on marriage.

In many Asian countries, marriage is still seen as a religious or cultural duty despite the Western view that marriage is a personal decision (Himawan, 2019 ). Furthermore, the negative association between unemployment and marriage rates in industrialized nations implies that both male and female employment are significantly affected during economic crises. The number of young individuals getting married during COVID-19 has decreased because of employment losses caused by the pandemic. However, some studies indicate a different correlation, according to which marriage is seen as a defense against difficult economic conditions in emerging nations (González-Val and Marcén, 2018 ). Women’s families may take advantage of their daughters’ weddings to relieve financial strain. Families of men may see marriage as a way to compensate for financial setbacks by using the bride’s dowry (Ahmed, 2012 ).

Limitations and recommendations

It is difficult to quantify and estimate whether the COVID-19 pandemic has had an increasing or decreasing impact on early marriages in different countries with very different socioeconomic and cultural dimensions. As there is little information on early marriage and COVID-19 infections in many countries, particularly developing countries, it is difficult to make generalizations applicable to particular countries. In particular, predicting the long-term effects of the pandemic on girls’ early marriages is difficult. Therefore, mixed studies combining qualitative and quantitative methods are needed to examine the effects of the pandemic on marriages, including early marriages in different age cohorts, in terms of gender. Future studies can also inform developing countries about how other countries have addressed the effects of COVID-19 on adolescents. Long-term studies can provide more insights into these effects over time. This understanding could help to identify patterns in cases where a pandemic of the same type occurs in the future.

It is critical to adapt and improve child protection initiatives, social programs, social protection services, education initiatives, and poverty reduction strategies to ensure the safety and well-being of girls and prevent early marriage. Ensuring that low-income families have access to opportunities and resources is a top priority. Governments in developing countries, especially rural areas, require increased funding and access to social security programs and educational opportunities. Campaigns to educate parents and other powerful people about the detrimental effects of child marriage and the need for girls’ education are essential, as are laws prohibiting child marriage. To effectively launch a campaign against child marriage, a coordinated effort is needed from various groups, such as government agencies, communities, civil society organizations, nonprofit organizations, and religious leaders.

Data availability

This study is based only on the relevant literature and is a review article.

Informal Union means socially or religiously accepted but legally unaccepted marriage.

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Atiqul Haq, S.M., Ahmed, M.N.Q., Lalin, S.A.A. et al. Early marriage of girls in the context of the COVID-19 pandemic: a literature review. Humanit Soc Sci Commun 11 , 697 (2024). https://doi.org/10.1057/s41599-024-03085-3

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Mirroring is a group phenomenon. Through action, people can recognize themselves, or a characteristic of themselves (usually the repressed side), reflected in the verbal and nonverbal behaviors in others as if they were looking into a mirror. It is a fundamental process in the development of the ego. By distinguishing themselves from others, clients discover their own identity, which is what makes them individual. Positive, benign mirroring is implemented as a way to develop new self-image through the “constructive act of recognizing self in others, and others in self….

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Ho, W.Y. (2019). Starting Literature Review in Qualitative Research: An Illustration Using the Mirror Effect. In: Tsang, K., Liu, D., Hong, Y. (eds) Challenges and Opportunities in Qualitative Research. Springer, Singapore. https://doi.org/10.1007/978-981-13-5811-1_2

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INNOVATIONS in pharmacy

Vol. 15 No. 2 (2024)

Copyright (c) 2024 Patrick Gallegos, Salaar, Michael

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License .

Copyright of content published in INNOVATIONS in pharmacy  belongs to the author(s).

Leadership and Followership in Health Professions: A Systematic Review

Patrick Gallegos

Cleveland Clinic Akron General

Muhammad Salaar Riaz

Nassau University Medical Center

Michael Peeters

University of Toledo

DOI: https://doi.org/10.24926/iip.v15i2.5987

Keywords: Leadership, Followership, Health Professions

Objective: Leadership discussion, including leadership development programs, is common. However, discussion of followership as a component of leadership seems less frequently discussed. With a focus on leadership and followership, this investigation reviewed the health-professions education literature and characterized leadership-followership within health-professions education.

Methods : Using PubMed, ERIC, and Google Scholar, two investigators independently and systematically searched health-professions education literature for articles related to leadership and followership. Reports were categorized based on the articles by type, application, profession, leadership, and followership qualities.

Results: Eighty-one articles were included. More than half (48/81, 59%) were theoretical, 27% (22/81) empirical, 7% (6/81) commentaries, and 6% (5/81) letters-to-the-editor). Empirical studies did not share outcomes that could be meaningfully combined quantitatively by meta-analysis; however, the vast majority (96%) of theoretical articles discussed a healthcare-related application of leadership and followership (e.g., improving patient care, improving communication, improving organizational efficiency). Thus, a qualitative review was completed. Of the 81 articles, 57% (n=46) involved multiple professions, while 43% (n=35) focused on a specific profession [Nursing (n=16), Medicine (n=7), Others (n=5) Surgery (n=3), Pharmacy (n=2), Veterinary Medicine (n=2)]. While most articles (75%) discussed leadership qualities (with top qualities of effective communication, visionary, and delegating tasks), fewer (57%) discussed followership qualities (with top qualities of being responsible, committed, and supportive). Of note, some qualities overlapped in both leadership and followership (with top qualities of effective communication, being supportive, and providing/receiving feedback).

Conclusions: Leadership-Followership was described in many health-professions’ education literature. However, Pharmacy and Veterinary Medicine had substantially fewer articles published on this topic. Notably, followership did not receive nearly as much attention as leadership. Leadership has a dynamic and complex interaction with followership highlighting that an effective leader must know how to be an effective follower and vice versa. To improve leadership within healthcare teamwork, education should focus on both leadership-followership.  

Author Biographies

Muhammad salaar riaz, nassau university medical center.

Internal Medicine Resident

Michael Peeters, University of Toledo

Director of Interprofessional Education

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