qualitative research methods literature

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What is Qualitative in Qualitative Research

Patrik aspers.

1 Department of Sociology, Uppsala University, Uppsala, Sweden

2 Seminar for Sociology, Universität St. Gallen, St. Gallen, Switzerland

3 Department of Media and Social Sciences, University of Stavanger, Stavanger, Norway

What is qualitative research? If we look for a precise definition of qualitative research, and specifically for one that addresses its distinctive feature of being “qualitative,” the literature is meager. In this article we systematically search, identify and analyze a sample of 89 sources using or attempting to define the term “qualitative.” Then, drawing on ideas we find scattered across existing work, and based on Becker’s classic study of marijuana consumption, we formulate and illustrate a definition that tries to capture its core elements. We define qualitative research as an iterative process in which improved understanding to the scientific community is achieved by making new significant distinctions resulting from getting closer to the phenomenon studied. This formulation is developed as a tool to help improve research designs while stressing that a qualitative dimension is present in quantitative work as well. Additionally, it can facilitate teaching, communication between researchers, diminish the gap between qualitative and quantitative researchers, help to address critiques of qualitative methods, and be used as a standard of evaluation of qualitative research.

If we assume that there is something called qualitative research, what exactly is this qualitative feature? And how could we evaluate qualitative research as good or not? Is it fundamentally different from quantitative research? In practice, most active qualitative researchers working with empirical material intuitively know what is involved in doing qualitative research, yet perhaps surprisingly, a clear definition addressing its key feature is still missing.

To address the question of what is qualitative we turn to the accounts of “qualitative research” in textbooks and also in empirical work. In his classic, explorative, interview study of deviance Howard Becker ( 1963 ) asks ‘How does one become a marijuana user?’ In contrast to pre-dispositional and psychological-individualistic theories of deviant behavior, Becker’s inherently social explanation contends that becoming a user of this substance is the result of a three-phase sequential learning process. First, potential users need to learn how to smoke it properly to produce the “correct” effects. If not, they are likely to stop experimenting with it. Second, they need to discover the effects associated with it; in other words, to get “high,” individuals not only have to experience what the drug does, but also to become aware that those sensations are related to using it. Third, they require learning to savor the feelings related to its consumption – to develop an acquired taste. Becker, who played music himself, gets close to the phenomenon by observing, taking part, and by talking to people consuming the drug: “half of the fifty interviews were conducted with musicians, the other half covered a wide range of people, including laborers, machinists, and people in the professions” (Becker 1963 :56).

Another central aspect derived through the common-to-all-research interplay between induction and deduction (Becker 2017 ), is that during the course of his research Becker adds scientifically meaningful new distinctions in the form of three phases—distinctions, or findings if you will, that strongly affect the course of his research: its focus, the material that he collects, and which eventually impact his findings. Each phase typically unfolds through social interaction, and often with input from experienced users in “a sequence of social experiences during which the person acquires a conception of the meaning of the behavior, and perceptions and judgments of objects and situations, all of which make the activity possible and desirable” (Becker 1963 :235). In this study the increased understanding of smoking dope is a result of a combination of the meaning of the actors, and the conceptual distinctions that Becker introduces based on the views expressed by his respondents. Understanding is the result of research and is due to an iterative process in which data, concepts and evidence are connected with one another (Becker 2017 ).

Indeed, there are many definitions of qualitative research, but if we look for a definition that addresses its distinctive feature of being “qualitative,” the literature across the broad field of social science is meager. The main reason behind this article lies in the paradox, which, to put it bluntly, is that researchers act as if they know what it is, but they cannot formulate a coherent definition. Sociologists and others will of course continue to conduct good studies that show the relevance and value of qualitative research addressing scientific and practical problems in society. However, our paper is grounded in the idea that providing a clear definition will help us improve the work that we do. Among researchers who practice qualitative research there is clearly much knowledge. We suggest that a definition makes this knowledge more explicit. If the first rationale for writing this paper refers to the “internal” aim of improving qualitative research, the second refers to the increased “external” pressure that especially many qualitative researchers feel; pressure that comes both from society as well as from other scientific approaches. There is a strong core in qualitative research, and leading researchers tend to agree on what it is and how it is done. Our critique is not directed at the practice of qualitative research, but we do claim that the type of systematic work we do has not yet been done, and that it is useful to improve the field and its status in relation to quantitative research.

The literature on the “internal” aim of improving, or at least clarifying qualitative research is large, and we do not claim to be the first to notice the vagueness of the term “qualitative” (Strauss and Corbin 1998 ). Also, others have noted that there is no single definition of it (Long and Godfrey 2004 :182), that there are many different views on qualitative research (Denzin and Lincoln 2003 :11; Jovanović 2011 :3), and that more generally, we need to define its meaning (Best 2004 :54). Strauss and Corbin ( 1998 ), for example, as well as Nelson et al. (1992:2 cited in Denzin and Lincoln 2003 :11), and Flick ( 2007 :ix–x), have recognized that the term is problematic: “Actually, the term ‘qualitative research’ is confusing because it can mean different things to different people” (Strauss and Corbin 1998 :10–11). Hammersley has discussed the possibility of addressing the problem, but states that “the task of providing an account of the distinctive features of qualitative research is far from straightforward” ( 2013 :2). This confusion, as he has recently further argued (Hammersley 2018 ), is also salient in relation to ethnography where different philosophical and methodological approaches lead to a lack of agreement about what it means.

Others (e.g. Hammersley 2018 ; Fine and Hancock 2017 ) have also identified the treat to qualitative research that comes from external forces, seen from the point of view of “qualitative research.” This threat can be further divided into that which comes from inside academia, such as the critique voiced by “quantitative research” and outside of academia, including, for example, New Public Management. Hammersley ( 2018 ), zooming in on one type of qualitative research, ethnography, has argued that it is under treat. Similarly to Fine ( 2003 ), and before him Gans ( 1999 ), he writes that ethnography’ has acquired a range of meanings, and comes in many different versions, these often reflecting sharply divergent epistemological orientations. And already more than twenty years ago while reviewing Denzin and Lincoln’ s Handbook of Qualitative Methods Fine argued:

While this increasing centrality [of qualitative research] might lead one to believe that consensual standards have developed, this belief would be misleading. As the methodology becomes more widely accepted, querulous challengers have raised fundamental questions that collectively have undercut the traditional models of how qualitative research is to be fashioned and presented (1995:417).

According to Hammersley, there are today “serious treats to the practice of ethnographic work, on almost any definition” ( 2018 :1). He lists five external treats: (1) that social research must be accountable and able to show its impact on society; (2) the current emphasis on “big data” and the emphasis on quantitative data and evidence; (3) the labor market pressure in academia that leaves less time for fieldwork (see also Fine and Hancock 2017 ); (4) problems of access to fields; and (5) the increased ethical scrutiny of projects, to which ethnography is particularly exposed. Hammersley discusses some more or less insufficient existing definitions of ethnography.

The current situation, as Hammersley and others note—and in relation not only to ethnography but also qualitative research in general, and as our empirical study shows—is not just unsatisfactory, it may even be harmful for the entire field of qualitative research, and does not help social science at large. We suggest that the lack of clarity of qualitative research is a real problem that must be addressed.

Towards a Definition of Qualitative Research

Seen in an historical light, what is today called qualitative, or sometimes ethnographic, interpretative research – or a number of other terms – has more or less always existed. At the time the founders of sociology – Simmel, Weber, Durkheim and, before them, Marx – were writing, and during the era of the Methodenstreit (“dispute about methods”) in which the German historical school emphasized scientific methods (cf. Swedberg 1990 ), we can at least speak of qualitative forerunners.

Perhaps the most extended discussion of what later became known as qualitative methods in a classic work is Bronisław Malinowski’s ( 1922 ) Argonauts in the Western Pacific , although even this study does not explicitly address the meaning of “qualitative.” In Weber’s ([1921–-22] 1978) work we find a tension between scientific explanations that are based on observation and quantification and interpretative research (see also Lazarsfeld and Barton 1982 ).

If we look through major sociology journals like the American Sociological Review , American Journal of Sociology , or Social Forces we will not find the term qualitative sociology before the 1970s. And certainly before then much of what we consider qualitative classics in sociology, like Becker’ study ( 1963 ), had already been produced. Indeed, the Chicago School often combined qualitative and quantitative data within the same study (Fine 1995 ). Our point being that before a disciplinary self-awareness the term quantitative preceded qualitative, and the articulation of the former was a political move to claim scientific status (Denzin and Lincoln 2005 ). In the US the World War II seem to have sparked a critique of sociological work, including “qualitative work,” that did not follow the scientific canon (Rawls 2018 ), which was underpinned by a scientifically oriented and value free philosophy of science. As a result the attempts and practice of integrating qualitative and quantitative sociology at Chicago lost ground to sociology that was more oriented to surveys and quantitative work at Columbia under Merton-Lazarsfeld. The quantitative tradition was also able to present textbooks (Lundberg 1951 ) that facilitated the use this approach and its “methods.” The practices of the qualitative tradition, by and large, remained tacit or was part of the mentoring transferred from the renowned masters to their students.

This glimpse into history leads us back to the lack of a coherent account condensed in a definition of qualitative research. Many of the attempts to define the term do not meet the requirements of a proper definition: A definition should be clear, avoid tautology, demarcate its domain in relation to the environment, and ideally only use words in its definiens that themselves are not in need of definition (Hempel 1966 ). A definition can enhance precision and thus clarity by identifying the core of the phenomenon. Preferably, a definition should be short. The typical definition we have found, however, is an ostensive definition, which indicates what qualitative research is about without informing us about what it actually is :

Qualitative research is multimethod in focus, involving an interpretative, naturalistic approach to its subject matter. This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them. Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives. (Denzin and Lincoln 2005 :2)

Flick claims that the label “qualitative research” is indeed used as an umbrella for a number of approaches ( 2007 :2–4; 2002 :6), and it is not difficult to identify research fitting this designation. Moreover, whatever it is, it has grown dramatically over the past five decades. In addition, courses have been developed, methods have flourished, arguments about its future have been advanced (for example, Denzin and Lincoln 1994) and criticized (for example, Snow and Morrill 1995 ), and dedicated journals and books have mushroomed. Most social scientists have a clear idea of research and how it differs from journalism, politics and other activities. But the question of what is qualitative in qualitative research is either eluded or eschewed.

We maintain that this lacuna hinders systematic knowledge production based on qualitative research. Paul Lazarsfeld noted the lack of “codification” as early as 1955 when he reviewed 100 qualitative studies in order to offer a codification of the practices (Lazarsfeld and Barton 1982 :239). Since then many texts on “qualitative research” and its methods have been published, including recent attempts (Goertz and Mahoney 2012 ) similar to Lazarsfeld’s. These studies have tried to extract what is qualitative by looking at the large number of empirical “qualitative” studies. Our novel strategy complements these endeavors by taking another approach and looking at the attempts to codify these practices in the form of a definition, as well as to a minor extent take Becker’s study as an exemplar of what qualitative researchers actually do, and what the characteristic of being ‘qualitative’ denotes and implies. We claim that qualitative researchers, if there is such a thing as “qualitative research,” should be able to codify their practices in a condensed, yet general way expressed in language.

Lingering problems of “generalizability” and “how many cases do I need” (Small 2009 ) are blocking advancement – in this line of work qualitative approaches are said to differ considerably from quantitative ones, while some of the former unsuccessfully mimic principles related to the latter (Small 2009 ). Additionally, quantitative researchers sometimes unfairly criticize the first based on their own quality criteria. Scholars like Goertz and Mahoney ( 2012 ) have successfully focused on the different norms and practices beyond what they argue are essentially two different cultures: those working with either qualitative or quantitative methods. Instead, similarly to Becker ( 2017 ) who has recently questioned the usefulness of the distinction between qualitative and quantitative research, we focus on similarities.

The current situation also impedes both students and researchers in focusing their studies and understanding each other’s work (Lazarsfeld and Barton 1982 :239). A third consequence is providing an opening for critiques by scholars operating within different traditions (Valsiner 2000 :101). A fourth issue is that the “implicit use of methods in qualitative research makes the field far less standardized than the quantitative paradigm” (Goertz and Mahoney 2012 :9). Relatedly, the National Science Foundation in the US organized two workshops in 2004 and 2005 to address the scientific foundations of qualitative research involving strategies to improve it and to develop standards of evaluation in qualitative research. However, a specific focus on its distinguishing feature of being “qualitative” while being implicitly acknowledged, was discussed only briefly (for example, Best 2004 ).

In 2014 a theme issue was published in this journal on “Methods, Materials, and Meanings: Designing Cultural Analysis,” discussing central issues in (cultural) qualitative research (Berezin 2014 ; Biernacki 2014 ; Glaeser 2014 ; Lamont and Swidler 2014 ; Spillman 2014). We agree with many of the arguments put forward, such as the risk of methodological tribalism, and that we should not waste energy on debating methods separated from research questions. Nonetheless, a clarification of the relation to what is called “quantitative research” is of outmost importance to avoid misunderstandings and misguided debates between “qualitative” and “quantitative” researchers. Our strategy means that researchers, “qualitative” or “quantitative” they may be, in their actual practice may combine qualitative work and quantitative work.

In this article we accomplish three tasks. First, we systematically survey the literature for meanings of qualitative research by looking at how researchers have defined it. Drawing upon existing knowledge we find that the different meanings and ideas of qualitative research are not yet coherently integrated into one satisfactory definition. Next, we advance our contribution by offering a definition of qualitative research and illustrate its meaning and use partially by expanding on the brief example introduced earlier related to Becker’s work ( 1963 ). We offer a systematic analysis of central themes of what researchers consider to be the core of “qualitative,” regardless of style of work. These themes – which we summarize in terms of four keywords: distinction, process, closeness, improved understanding – constitute part of our literature review, in which each one appears, sometimes with others, but never all in the same definition. They serve as the foundation of our contribution. Our categories are overlapping. Their use is primarily to organize the large amount of definitions we have identified and analyzed, and not necessarily to draw a clear distinction between them. Finally, we continue the elaboration discussed above on the advantages of a clear definition of qualitative research.

In a hermeneutic fashion we propose that there is something meaningful that deserves to be labelled “qualitative research” (Gadamer 1990 ). To approach the question “What is qualitative in qualitative research?” we have surveyed the literature. In conducting our survey we first traced the word’s etymology in dictionaries, encyclopedias, handbooks of the social sciences and of methods and textbooks, mainly in English, which is common to methodology courses. It should be noted that we have zoomed in on sociology and its literature. This discipline has been the site of the largest debate and development of methods that can be called “qualitative,” which suggests that this field should be examined in great detail.

In an ideal situation we should expect that one good definition, or at least some common ideas, would have emerged over the years. This common core of qualitative research should be so accepted that it would appear in at least some textbooks. Since this is not what we found, we decided to pursue an inductive approach to capture maximal variation in the field of qualitative research; we searched in a selection of handbooks, textbooks, book chapters, and books, to which we added the analysis of journal articles. Our sample comprises a total of 89 references.

In practice we focused on the discipline that has had a clear discussion of methods, namely sociology. We also conducted a broad search in the JSTOR database to identify scholarly sociology articles published between 1998 and 2017 in English with a focus on defining or explaining qualitative research. We specifically zoom in on this time frame because we would have expect that this more mature period would have produced clear discussions on the meaning of qualitative research. To find these articles we combined a number of keywords to search the content and/or the title: qualitative (which was always included), definition, empirical, research, methodology, studies, fieldwork, interview and observation .

As a second phase of our research we searched within nine major sociological journals ( American Journal of Sociology , Sociological Theory , American Sociological Review , Contemporary Sociology , Sociological Forum , Sociological Theory , Qualitative Research , Qualitative Sociology and Qualitative Sociology Review ) for articles also published during the past 19 years (1998–2017) that had the term “qualitative” in the title and attempted to define qualitative research.

Lastly we picked two additional journals, Qualitative Research and Qualitative Sociology , in which we could expect to find texts addressing the notion of “qualitative.” From Qualitative Research we chose Volume 14, Issue 6, December 2014, and from Qualitative Sociology we chose Volume 36, Issue 2, June 2017. Within each of these we selected the first article; then we picked the second article of three prior issues. Again we went back another three issues and investigated article number three. Finally we went back another three issues and perused article number four. This selection criteria was used to get a manageable sample for the analysis.

The coding process of the 89 references we gathered in our selected review began soon after the first round of material was gathered, and we reduced the complexity created by our maximum variation sampling (Snow and Anderson 1993 :22) to four different categories within which questions on the nature and properties of qualitative research were discussed. We call them: Qualitative and Quantitative Research, Qualitative Research, Fieldwork, and Grounded Theory. This – which may appear as an illogical grouping – merely reflects the “context” in which the matter of “qualitative” is discussed. If the selection process of the material – books and articles – was informed by pre-knowledge, we used an inductive strategy to code the material. When studying our material, we identified four central notions related to “qualitative” that appear in various combinations in the literature which indicate what is the core of qualitative research. We have labeled them: “distinctions”, “process,” “closeness,” and “improved understanding.” During the research process the categories and notions were improved, refined, changed, and reordered. The coding ended when a sense of saturation in the material arose. In the presentation below all quotations and references come from our empirical material of texts on qualitative research.

Analysis – What is Qualitative Research?

In this section we describe the four categories we identified in the coding, how they differently discuss qualitative research, as well as their overall content. Some salient quotations are selected to represent the type of text sorted under each of the four categories. What we present are examples from the literature.

Qualitative and Quantitative

This analytic category comprises quotations comparing qualitative and quantitative research, a distinction that is frequently used (Brown 2010 :231); in effect this is a conceptual pair that structures the discussion and that may be associated with opposing interests. While the general goal of quantitative and qualitative research is the same – to understand the world better – their methodologies and focus in certain respects differ substantially (Becker 1966 :55). Quantity refers to that property of something that can be determined by measurement. In a dictionary of Statistics and Methodology we find that “(a) When referring to *variables, ‘qualitative’ is another term for *categorical or *nominal. (b) When speaking of kinds of research, ‘qualitative’ refers to studies of subjects that are hard to quantify, such as art history. Qualitative research tends to be a residual category for almost any kind of non-quantitative research” (Stiles 1998:183). But it should be obvious that one could employ a quantitative approach when studying, for example, art history.

The same dictionary states that quantitative is “said of variables or research that can be handled numerically, usually (too sharply) contrasted with *qualitative variables and research” (Stiles 1998:184). From a qualitative perspective “quantitative research” is about numbers and counting, and from a quantitative perspective qualitative research is everything that is not about numbers. But this does not say much about what is “qualitative.” If we turn to encyclopedias we find that in the 1932 edition of the Encyclopedia of the Social Sciences there is no mention of “qualitative.” In the Encyclopedia from 1968 we can read:

Qualitative Analysis. For methods of obtaining, analyzing, and describing data, see [the various entries:] CONTENT ANALYSIS; COUNTED DATA; EVALUATION RESEARCH, FIELD WORK; GRAPHIC PRESENTATION; HISTORIOGRAPHY, especially the article on THE RHETORIC OF HISTORY; INTERVIEWING; OBSERVATION; PERSONALITY MEASUREMENT; PROJECTIVE METHODS; PSYCHOANALYSIS, article on EXPERIMENTAL METHODS; SURVEY ANALYSIS, TABULAR PRESENTATION; TYPOLOGIES. (Vol. 13:225)

Some, like Alford, divide researchers into methodologists or, in his words, “quantitative and qualitative specialists” (Alford 1998 :12). Qualitative research uses a variety of methods, such as intensive interviews or in-depth analysis of historical materials, and it is concerned with a comprehensive account of some event or unit (King et al. 1994 :4). Like quantitative research it can be utilized to study a variety of issues, but it tends to focus on meanings and motivations that underlie cultural symbols, personal experiences, phenomena and detailed understanding of processes in the social world. In short, qualitative research centers on understanding processes, experiences, and the meanings people assign to things (Kalof et al. 2008 :79).

Others simply say that qualitative methods are inherently unscientific (Jovanović 2011 :19). Hood, for instance, argues that words are intrinsically less precise than numbers, and that they are therefore more prone to subjective analysis, leading to biased results (Hood 2006 :219). Qualitative methodologies have raised concerns over the limitations of quantitative templates (Brady et al. 2004 :4). Scholars such as King et al. ( 1994 ), for instance, argue that non-statistical research can produce more reliable results if researchers pay attention to the rules of scientific inference commonly stated in quantitative research. Also, researchers such as Becker ( 1966 :59; 1970 :42–43) have asserted that, if conducted properly, qualitative research and in particular ethnographic field methods, can lead to more accurate results than quantitative studies, in particular, survey research and laboratory experiments.

Some researchers, such as Kalof, Dan, and Dietz ( 2008 :79) claim that the boundaries between the two approaches are becoming blurred, and Small ( 2009 ) argues that currently much qualitative research (especially in North America) tries unsuccessfully and unnecessarily to emulate quantitative standards. For others, qualitative research tends to be more humanistic and discursive (King et al. 1994 :4). Ragin ( 1994 ), and similarly also Becker, ( 1996 :53), Marchel and Owens ( 2007 :303) think that the main distinction between the two styles is overstated and does not rest on the simple dichotomy of “numbers versus words” (Ragin 1994 :xii). Some claim that quantitative data can be utilized to discover associations, but in order to unveil cause and effect a complex research design involving the use of qualitative approaches needs to be devised (Gilbert 2009 :35). Consequently, qualitative data are useful for understanding the nuances lying beyond those processes as they unfold (Gilbert 2009 :35). Others contend that qualitative research is particularly well suited both to identify causality and to uncover fine descriptive distinctions (Fine and Hallett 2014 ; Lichterman and Isaac Reed 2014 ; Katz 2015 ).

There are other ways to separate these two traditions, including normative statements about what qualitative research should be (that is, better or worse than quantitative approaches, concerned with scientific approaches to societal change or vice versa; Snow and Morrill 1995 ; Denzin and Lincoln 2005 ), or whether it should develop falsifiable statements; Best 2004 ).

We propose that quantitative research is largely concerned with pre-determined variables (Small 2008 ); the analysis concerns the relations between variables. These categories are primarily not questioned in the study, only their frequency or degree, or the correlations between them (cf. Franzosi 2016 ). If a researcher studies wage differences between women and men, he or she works with given categories: x number of men are compared with y number of women, with a certain wage attributed to each person. The idea is not to move beyond the given categories of wage, men and women; they are the starting point as well as the end point, and undergo no “qualitative change.” Qualitative research, in contrast, investigates relations between categories that are themselves subject to change in the research process. Returning to Becker’s study ( 1963 ), we see that he questioned pre-dispositional theories of deviant behavior working with pre-determined variables such as an individual’s combination of personal qualities or emotional problems. His take, in contrast, was to understand marijuana consumption by developing “variables” as part of the investigation. Thereby he presented new variables, or as we would say today, theoretical concepts, but which are grounded in the empirical material.

Qualitative Research

This category contains quotations that refer to descriptions of qualitative research without making comparisons with quantitative research. Researchers such as Denzin and Lincoln, who have written a series of influential handbooks on qualitative methods (1994; Denzin and Lincoln 2003 ; 2005 ), citing Nelson et al. (1992:4), argue that because qualitative research is “interdisciplinary, transdisciplinary, and sometimes counterdisciplinary” it is difficult to derive one single definition of it (Jovanović 2011 :3). According to them, in fact, “the field” is “many things at the same time,” involving contradictions, tensions over its focus, methods, and how to derive interpretations and findings ( 2003 : 11). Similarly, others, such as Flick ( 2007 :ix–x) contend that agreeing on an accepted definition has increasingly become problematic, and that qualitative research has possibly matured different identities. However, Best holds that “the proliferation of many sorts of activities under the label of qualitative sociology threatens to confuse our discussions” ( 2004 :54). Atkinson’s position is more definite: “the current state of qualitative research and research methods is confused” ( 2005 :3–4).

Qualitative research is about interpretation (Blumer 1969 ; Strauss and Corbin 1998 ; Denzin and Lincoln 2003 ), or Verstehen [understanding] (Frankfort-Nachmias and Nachmias 1996 ). It is “multi-method,” involving the collection and use of a variety of empirical materials (Denzin and Lincoln 1998; Silverman 2013 ) and approaches (Silverman 2005 ; Flick 2007 ). It focuses not only on the objective nature of behavior but also on its subjective meanings: individuals’ own accounts of their attitudes, motivations, behavior (McIntyre 2005 :127; Creswell 2009 ), events and situations (Bryman 1989) – what people say and do in specific places and institutions (Goodwin and Horowitz 2002 :35–36) in social and temporal contexts (Morrill and Fine 1997). For this reason, following Weber ([1921-22] 1978), it can be described as an interpretative science (McIntyre 2005 :127). But could quantitative research also be concerned with these questions? Also, as pointed out below, does all qualitative research focus on subjective meaning, as some scholars suggest?

Others also distinguish qualitative research by claiming that it collects data using a naturalistic approach (Denzin and Lincoln 2005 :2; Creswell 2009 ), focusing on the meaning actors ascribe to their actions. But again, does all qualitative research need to be collected in situ? And does qualitative research have to be inherently concerned with meaning? Flick ( 2007 ), referring to Denzin and Lincoln ( 2005 ), mentions conversation analysis as an example of qualitative research that is not concerned with the meanings people bring to a situation, but rather with the formal organization of talk. Still others, such as Ragin ( 1994 :85), note that qualitative research is often (especially early on in the project, we would add) less structured than other kinds of social research – a characteristic connected to its flexibility and that can lead both to potentially better, but also worse results. But is this not a feature of this type of research, rather than a defining description of its essence? Wouldn’t this comment also apply, albeit to varying degrees, to quantitative research?

In addition, Strauss ( 2003 ), along with others, such as Alvesson and Kärreman ( 2011 :10–76), argue that qualitative researchers struggle to capture and represent complex phenomena partially because they tend to collect a large amount of data. While his analysis is correct at some points – “It is necessary to do detailed, intensive, microscopic examination of the data in order to bring out the amazing complexity of what lies in, behind, and beyond those data” (Strauss 2003 :10) – much of his analysis concerns the supposed focus of qualitative research and its challenges, rather than exactly what it is about. But even in this instance we would make a weak case arguing that these are strictly the defining features of qualitative research. Some researchers seem to focus on the approach or the methods used, or even on the way material is analyzed. Several researchers stress the naturalistic assumption of investigating the world, suggesting that meaning and interpretation appear to be a core matter of qualitative research.

We can also see that in this category there is no consensus about specific qualitative methods nor about qualitative data. Many emphasize interpretation, but quantitative research, too, involves interpretation; the results of a regression analysis, for example, certainly have to be interpreted, and the form of meta-analysis that factor analysis provides indeed requires interpretation However, there is no interpretation of quantitative raw data, i.e., numbers in tables. One common thread is that qualitative researchers have to get to grips with their data in order to understand what is being studied in great detail, irrespective of the type of empirical material that is being analyzed. This observation is connected to the fact that qualitative researchers routinely make several adjustments of focus and research design as their studies progress, in many cases until the very end of the project (Kalof et al. 2008 ). If you, like Becker, do not start out with a detailed theory, adjustments such as the emergence and refinement of research questions will occur during the research process. We have thus found a number of useful reflections about qualitative research scattered across different sources, but none of them effectively describe the defining characteristics of this approach.

Although qualitative research does not appear to be defined in terms of a specific method, it is certainly common that fieldwork, i.e., research that entails that the researcher spends considerable time in the field that is studied and use the knowledge gained as data, is seen as emblematic of or even identical to qualitative research. But because we understand that fieldwork tends to focus primarily on the collection and analysis of qualitative data, we expected to find within it discussions on the meaning of “qualitative.” But, again, this was not the case.

Instead, we found material on the history of this approach (for example, Frankfort-Nachmias and Nachmias 1996 ; Atkinson et al. 2001), including how it has changed; for example, by adopting a more self-reflexive practice (Heyl 2001), as well as the different nomenclature that has been adopted, such as fieldwork, ethnography, qualitative research, naturalistic research, participant observation and so on (for example, Lofland et al. 2006 ; Gans 1999 ).

We retrieved definitions of ethnography, such as “the study of people acting in the natural courses of their daily lives,” involving a “resocialization of the researcher” (Emerson 1988 :1) through intense immersion in others’ social worlds (see also examples in Hammersley 2018 ). This may be accomplished by direct observation and also participation (Neuman 2007 :276), although others, such as Denzin ( 1970 :185), have long recognized other types of observation, including non-participant (“fly on the wall”). In this category we have also isolated claims and opposing views, arguing that this type of research is distinguished primarily by where it is conducted (natural settings) (Hughes 1971:496), and how it is carried out (a variety of methods are applied) or, for some most importantly, by involving an active, empathetic immersion in those being studied (Emerson 1988 :2). We also retrieved descriptions of the goals it attends in relation to how it is taught (understanding subjective meanings of the people studied, primarily develop theory, or contribute to social change) (see for example, Corte and Irwin 2017 ; Frankfort-Nachmias and Nachmias 1996 :281; Trier-Bieniek 2012 :639) by collecting the richest possible data (Lofland et al. 2006 ) to derive “thick descriptions” (Geertz 1973 ), and/or to aim at theoretical statements of general scope and applicability (for example, Emerson 1988 ; Fine 2003 ). We have identified guidelines on how to evaluate it (for example Becker 1996 ; Lamont 2004 ) and have retrieved instructions on how it should be conducted (for example, Lofland et al. 2006 ). For instance, analysis should take place while the data gathering unfolds (Emerson 1988 ; Hammersley and Atkinson 2007 ; Lofland et al. 2006 ), observations should be of long duration (Becker 1970 :54; Goffman 1989 ), and data should be of high quantity (Becker 1970 :52–53), as well as other questionable distinctions between fieldwork and other methods:

Field studies differ from other methods of research in that the researcher performs the task of selecting topics, decides what questions to ask, and forges interest in the course of the research itself . This is in sharp contrast to many ‘theory-driven’ and ‘hypothesis-testing’ methods. (Lofland and Lofland 1995 :5)

But could not, for example, a strictly interview-based study be carried out with the same amount of flexibility, such as sequential interviewing (for example, Small 2009 )? Once again, are quantitative approaches really as inflexible as some qualitative researchers think? Moreover, this category stresses the role of the actors’ meaning, which requires knowledge and close interaction with people, their practices and their lifeworld.

It is clear that field studies – which are seen by some as the “gold standard” of qualitative research – are nonetheless only one way of doing qualitative research. There are other methods, but it is not clear why some are more qualitative than others, or why they are better or worse. Fieldwork is characterized by interaction with the field (the material) and understanding of the phenomenon that is being studied. In Becker’s case, he had general experience from fields in which marihuana was used, based on which he did interviews with actual users in several fields.

Grounded Theory

Another major category we identified in our sample is Grounded Theory. We found descriptions of it most clearly in Glaser and Strauss’ ([1967] 2010 ) original articulation, Strauss and Corbin ( 1998 ) and Charmaz ( 2006 ), as well as many other accounts of what it is for: generating and testing theory (Strauss 2003 :xi). We identified explanations of how this task can be accomplished – such as through two main procedures: constant comparison and theoretical sampling (Emerson 1998:96), and how using it has helped researchers to “think differently” (for example, Strauss and Corbin 1998 :1). We also read descriptions of its main traits, what it entails and fosters – for instance, an exceptional flexibility, an inductive approach (Strauss and Corbin 1998 :31–33; 1990; Esterberg 2002 :7), an ability to step back and critically analyze situations, recognize tendencies towards bias, think abstractly and be open to criticism, enhance sensitivity towards the words and actions of respondents, and develop a sense of absorption and devotion to the research process (Strauss and Corbin 1998 :5–6). Accordingly, we identified discussions of the value of triangulating different methods (both using and not using grounded theory), including quantitative ones, and theories to achieve theoretical development (most comprehensively in Denzin 1970 ; Strauss and Corbin 1998 ; Timmermans and Tavory 2012 ). We have also located arguments about how its practice helps to systematize data collection, analysis and presentation of results (Glaser and Strauss [1967] 2010 :16).

Grounded theory offers a systematic approach which requires researchers to get close to the field; closeness is a requirement of identifying questions and developing new concepts or making further distinctions with regard to old concepts. In contrast to other qualitative approaches, grounded theory emphasizes the detailed coding process, and the numerous fine-tuned distinctions that the researcher makes during the process. Within this category, too, we could not find a satisfying discussion of the meaning of qualitative research.

Defining Qualitative Research

In sum, our analysis shows that some notions reappear in the discussion of qualitative research, such as understanding, interpretation, “getting close” and making distinctions. These notions capture aspects of what we think is “qualitative.” However, a comprehensive definition that is useful and that can further develop the field is lacking, and not even a clear picture of its essential elements appears. In other words no definition emerges from our data, and in our research process we have moved back and forth between our empirical data and the attempt to present a definition. Our concrete strategy, as stated above, is to relate qualitative and quantitative research, or more specifically, qualitative and quantitative work. We use an ideal-typical notion of quantitative research which relies on taken for granted and numbered variables. This means that the data consists of variables on different scales, such as ordinal, but frequently ratio and absolute scales, and the representation of the numbers to the variables, i.e. the justification of the assignment of numbers to object or phenomenon, are not questioned, though the validity may be questioned. In this section we return to the notion of quality and try to clarify it while presenting our contribution.

Broadly, research refers to the activity performed by people trained to obtain knowledge through systematic procedures. Notions such as “objectivity” and “reflexivity,” “systematic,” “theory,” “evidence” and “openness” are here taken for granted in any type of research. Next, building on our empirical analysis we explain the four notions that we have identified as central to qualitative work: distinctions, process, closeness, and improved understanding. In discussing them, ultimately in relation to one another, we make their meaning even more precise. Our idea, in short, is that only when these ideas that we present separately for analytic purposes are brought together can we speak of qualitative research.

Distinctions

We believe that the possibility of making new distinctions is one the defining characteristics of qualitative research. It clearly sets it apart from quantitative analysis which works with taken-for-granted variables, albeit as mentioned, meta-analyses, for example, factor analysis may result in new variables. “Quality” refers essentially to distinctions, as already pointed out by Aristotle. He discusses the term “qualitative” commenting: “By a quality I mean that in virtue of which things are said to be qualified somehow” (Aristotle 1984:14). Quality is about what something is or has, which means that the distinction from its environment is crucial. We see qualitative research as a process in which significant new distinctions are made to the scholarly community; to make distinctions is a key aspect of obtaining new knowledge; a point, as we will see, that also has implications for “quantitative research.” The notion of being “significant” is paramount. New distinctions by themselves are not enough; just adding concepts only increases complexity without furthering our knowledge. The significance of new distinctions is judged against the communal knowledge of the research community. To enable this discussion and judgements central elements of rational discussion are required (cf. Habermas [1981] 1987 ; Davidsson [ 1988 ] 2001) to identify what is new and relevant scientific knowledge. Relatedly, Ragin alludes to the idea of new and useful knowledge at a more concrete level: “Qualitative methods are appropriate for in-depth examination of cases because they aid the identification of key features of cases. Most qualitative methods enhance data” (1994:79). When Becker ( 1963 ) studied deviant behavior and investigated how people became marihuana smokers, he made distinctions between the ways in which people learned how to smoke. This is a classic example of how the strategy of “getting close” to the material, for example the text, people or pictures that are subject to analysis, may enable researchers to obtain deeper insight and new knowledge by making distinctions – in this instance on the initial notion of learning how to smoke. Others have stressed the making of distinctions in relation to coding or theorizing. Emerson et al. ( 1995 ), for example, hold that “qualitative coding is a way of opening up avenues of inquiry,” meaning that the researcher identifies and develops concepts and analytic insights through close examination of and reflection on data (Emerson et al. 1995 :151). Goodwin and Horowitz highlight making distinctions in relation to theory-building writing: “Close engagement with their cases typically requires qualitative researchers to adapt existing theories or to make new conceptual distinctions or theoretical arguments to accommodate new data” ( 2002 : 37). In the ideal-typical quantitative research only existing and so to speak, given, variables would be used. If this is the case no new distinction are made. But, would not also many “quantitative” researchers make new distinctions?

Process does not merely suggest that research takes time. It mainly implies that qualitative new knowledge results from a process that involves several phases, and above all iteration. Qualitative research is about oscillation between theory and evidence, analysis and generating material, between first- and second -order constructs (Schütz 1962 :59), between getting in contact with something, finding sources, becoming deeply familiar with a topic, and then distilling and communicating some of its essential features. The main point is that the categories that the researcher uses, and perhaps takes for granted at the beginning of the research process, usually undergo qualitative changes resulting from what is found. Becker describes how he tested hypotheses and let the jargon of the users develop into theoretical concepts. This happens over time while the study is being conducted, exemplifying what we mean by process.

In the research process, a pilot-study may be used to get a first glance of, for example, the field, how to approach it, and what methods can be used, after which the method and theory are chosen or refined before the main study begins. Thus, the empirical material is often central from the start of the project and frequently leads to adjustments by the researcher. Likewise, during the main study categories are not fixed; the empirical material is seen in light of the theory used, but it is also given the opportunity to kick back, thereby resisting attempts to apply theoretical straightjackets (Becker 1970 :43). In this process, coding and analysis are interwoven, and thus are often important steps for getting closer to the phenomenon and deciding what to focus on next. Becker began his research by interviewing musicians close to him, then asking them to refer him to other musicians, and later on doubling his original sample of about 25 to include individuals in other professions (Becker 1973:46). Additionally, he made use of some participant observation, documents, and interviews with opiate users made available to him by colleagues. As his inductive theory of deviance evolved, Becker expanded his sample in order to fine tune it, and test the accuracy and generality of his hypotheses. In addition, he introduced a negative case and discussed the null hypothesis ( 1963 :44). His phasic career model is thus based on a research design that embraces processual work. Typically, process means to move between “theory” and “material” but also to deal with negative cases, and Becker ( 1998 ) describes how discovering these negative cases impacted his research design and ultimately its findings.

Obviously, all research is process-oriented to some degree. The point is that the ideal-typical quantitative process does not imply change of the data, and iteration between data, evidence, hypotheses, empirical work, and theory. The data, quantified variables, are, in most cases fixed. Merging of data, which of course can be done in a quantitative research process, does not mean new data. New hypotheses are frequently tested, but the “raw data is often the “the same.” Obviously, over time new datasets are made available and put into use.

Another characteristic that is emphasized in our sample is that qualitative researchers – and in particular ethnographers – can, or as Goffman put it, ought to ( 1989 ), get closer to the phenomenon being studied and their data than quantitative researchers (for example, Silverman 2009 :85). Put differently, essentially because of their methods qualitative researchers get into direct close contact with those being investigated and/or the material, such as texts, being analyzed. Becker started out his interview study, as we noted, by talking to those he knew in the field of music to get closer to the phenomenon he was studying. By conducting interviews he got even closer. Had he done more observations, he would undoubtedly have got even closer to the field.

Additionally, ethnographers’ design enables researchers to follow the field over time, and the research they do is almost by definition longitudinal, though the time in the field is studied obviously differs between studies. The general characteristic of closeness over time maximizes the chances of unexpected events, new data (related, for example, to archival research as additional sources, and for ethnography for situations not necessarily previously thought of as instrumental – what Mannay and Morgan ( 2015 ) term the “waiting field”), serendipity (Merton and Barber 2004 ; Åkerström 2013 ), and possibly reactivity, as well as the opportunity to observe disrupted patterns that translate into exemplars of negative cases. Two classic examples of this are Becker’s finding of what medical students call “crocks” (Becker et al. 1961 :317), and Geertz’s ( 1973 ) study of “deep play” in Balinese society.

By getting and staying so close to their data – be it pictures, text or humans interacting (Becker was himself a musician) – for a long time, as the research progressively focuses, qualitative researchers are prompted to continually test their hunches, presuppositions and hypotheses. They test them against a reality that often (but certainly not always), and practically, as well as metaphorically, talks back, whether by validating them, or disqualifying their premises – correctly, as well as incorrectly (Fine 2003 ; Becker 1970 ). This testing nonetheless often leads to new directions for the research. Becker, for example, says that he was initially reading psychological theories, but when facing the data he develops a theory that looks at, you may say, everything but psychological dispositions to explain the use of marihuana. Especially researchers involved with ethnographic methods have a fairly unique opportunity to dig up and then test (in a circular, continuous and temporal way) new research questions and findings as the research progresses, and thereby to derive previously unimagined and uncharted distinctions by getting closer to the phenomenon under study.

Let us stress that getting close is by no means restricted to ethnography. The notion of hermeneutic circle and hermeneutics as a general way of understanding implies that we must get close to the details in order to get the big picture. This also means that qualitative researchers can literally also make use of details of pictures as evidence (cf. Harper 2002). Thus, researchers may get closer both when generating the material or when analyzing it.

Quantitative research, we maintain, in the ideal-typical representation cannot get closer to the data. The data is essentially numbers in tables making up the variables (Franzosi 2016 :138). The data may originally have been “qualitative,” but once reduced to numbers there can only be a type of “hermeneutics” about what the number may stand for. The numbers themselves, however, are non-ambiguous. Thus, in quantitative research, interpretation, if done, is not about the data itself—the numbers—but what the numbers stand for. It follows that the interpretation is essentially done in a more “speculative” mode without direct empirical evidence (cf. Becker 2017 ).

Improved Understanding

While distinction, process and getting closer refer to the qualitative work of the researcher, improved understanding refers to its conditions and outcome of this work. Understanding cuts deeper than explanation, which to some may mean a causally verified correlation between variables. The notion of explanation presupposes the notion of understanding since explanation does not include an idea of how knowledge is gained (Manicas 2006 : 15). Understanding, we argue, is the core concept of what we call the outcome of the process when research has made use of all the other elements that were integrated in the research. Understanding, then, has a special status in qualitative research since it refers both to the conditions of knowledge and the outcome of the process. Understanding can to some extent be seen as the condition of explanation and occurs in a process of interpretation, which naturally refers to meaning (Gadamer 1990 ). It is fundamentally connected to knowing, and to the knowing of how to do things (Heidegger [1927] 2001 ). Conceptually the term hermeneutics is used to account for this process. Heidegger ties hermeneutics to human being and not possible to separate from the understanding of being ( 1988 ). Here we use it in a broader sense, and more connected to method in general (cf. Seiffert 1992 ). The abovementioned aspects – for example, “objectivity” and “reflexivity” – of the approach are conditions of scientific understanding. Understanding is the result of a circular process and means that the parts are understood in light of the whole, and vice versa. Understanding presupposes pre-understanding, or in other words, some knowledge of the phenomenon studied. The pre-understanding, even in the form of prejudices, are in qualitative research process, which we see as iterative, questioned, which gradually or suddenly change due to the iteration of data, evidence and concepts. However, qualitative research generates understanding in the iterative process when the researcher gets closer to the data, e.g., by going back and forth between field and analysis in a process that generates new data that changes the evidence, and, ultimately, the findings. Questioning, to ask questions, and put what one assumes—prejudices and presumption—in question, is central to understand something (Heidegger [1927] 2001 ; Gadamer 1990 :368–384). We propose that this iterative process in which the process of understanding occurs is characteristic of qualitative research.

Improved understanding means that we obtain scientific knowledge of something that we as a scholarly community did not know before, or that we get to know something better. It means that we understand more about how parts are related to one another, and to other things we already understand (see also Fine and Hallett 2014 ). Understanding is an important condition for qualitative research. It is not enough to identify correlations, make distinctions, and work in a process in which one gets close to the field or phenomena. Understanding is accomplished when the elements are integrated in an iterative process.

It is, moreover, possible to understand many things, and researchers, just like children, may come to understand new things every day as they engage with the world. This subjective condition of understanding – namely, that a person gains a better understanding of something –is easily met. To be qualified as “scientific,” the understanding must be general and useful to many; it must be public. But even this generally accessible understanding is not enough in order to speak of “scientific understanding.” Though we as a collective can increase understanding of everything in virtually all potential directions as a result also of qualitative work, we refrain from this “objective” way of understanding, which has no means of discriminating between what we gain in understanding. Scientific understanding means that it is deemed relevant from the scientific horizon (compare Schütz 1962 : 35–38, 46, 63), and that it rests on the pre-understanding that the scientists have and must have in order to understand. In other words, the understanding gained must be deemed useful by other researchers, so that they can build on it. We thus see understanding from a pragmatic, rather than a subjective or objective perspective. Improved understanding is related to the question(s) at hand. Understanding, in order to represent an improvement, must be an improvement in relation to the existing body of knowledge of the scientific community (James [ 1907 ] 1955). Scientific understanding is, by definition, collective, as expressed in Weber’s famous note on objectivity, namely that scientific work aims at truths “which … can claim, even for a Chinese, the validity appropriate to an empirical analysis” ([1904] 1949 :59). By qualifying “improved understanding” we argue that it is a general defining characteristic of qualitative research. Becker‘s ( 1966 ) study and other research of deviant behavior increased our understanding of the social learning processes of how individuals start a behavior. And it also added new knowledge about the labeling of deviant behavior as a social process. Few studies, of course, make the same large contribution as Becker’s, but are nonetheless qualitative research.

Understanding in the phenomenological sense, which is a hallmark of qualitative research, we argue, requires meaning and this meaning is derived from the context, and above all the data being analyzed. The ideal-typical quantitative research operates with given variables with different numbers. This type of material is not enough to establish meaning at the level that truly justifies understanding. In other words, many social science explanations offer ideas about correlations or even causal relations, but this does not mean that the meaning at the level of the data analyzed, is understood. This leads us to say that there are indeed many explanations that meet the criteria of understanding, for example the explanation of how one becomes a marihuana smoker presented by Becker. However, we may also understand a phenomenon without explaining it, and we may have potential explanations, or better correlations, that are not really understood.

We may speak more generally of quantitative research and its data to clarify what we see as an important distinction. The “raw data” that quantitative research—as an idealtypical activity, refers to is not available for further analysis; the numbers, once created, are not to be questioned (Franzosi 2016 : 138). If the researcher is to do “more” or “change” something, this will be done by conjectures based on theoretical knowledge or based on the researcher’s lifeworld. Both qualitative and quantitative research is based on the lifeworld, and all researchers use prejudices and pre-understanding in the research process. This idea is present in the works of Heidegger ( 2001 ) and Heisenberg (cited in Franzosi 2010 :619). Qualitative research, as we argued, involves the interaction and questioning of concepts (theory), data, and evidence.

Ragin ( 2004 :22) points out that “a good definition of qualitative research should be inclusive and should emphasize its key strengths and features, not what it lacks (for example, the use of sophisticated quantitative techniques).” We define qualitative research as an iterative process in which improved understanding to the scientific community is achieved by making new significant distinctions resulting from getting closer to the phenomenon studied. Qualitative research, as defined here, is consequently a combination of two criteria: (i) how to do things –namely, generating and analyzing empirical material, in an iterative process in which one gets closer by making distinctions, and (ii) the outcome –improved understanding novel to the scholarly community. Is our definition applicable to our own study? In this study we have closely read the empirical material that we generated, and the novel distinction of the notion “qualitative research” is the outcome of an iterative process in which both deduction and induction were involved, in which we identified the categories that we analyzed. We thus claim to meet the first criteria, “how to do things.” The second criteria cannot be judged but in a partial way by us, namely that the “outcome” —in concrete form the definition-improves our understanding to others in the scientific community.

We have defined qualitative research, or qualitative scientific work, in relation to quantitative scientific work. Given this definition, qualitative research is about questioning the pre-given (taken for granted) variables, but it is thus also about making new distinctions of any type of phenomenon, for example, by coining new concepts, including the identification of new variables. This process, as we have discussed, is carried out in relation to empirical material, previous research, and thus in relation to theory. Theory and previous research cannot be escaped or bracketed. According to hermeneutic principles all scientific work is grounded in the lifeworld, and as social scientists we can thus never fully bracket our pre-understanding.

We have proposed that quantitative research, as an idealtype, is concerned with pre-determined variables (Small 2008 ). Variables are epistemically fixed, but can vary in terms of dimensions, such as frequency or number. Age is an example; as a variable it can take on different numbers. In relation to quantitative research, qualitative research does not reduce its material to number and variables. If this is done the process of comes to a halt, the researcher gets more distanced from her data, and it makes it no longer possible to make new distinctions that increase our understanding. We have above discussed the components of our definition in relation to quantitative research. Our conclusion is that in the research that is called quantitative there are frequent and necessary qualitative elements.

Further, comparative empirical research on researchers primarily working with ”quantitative” approaches and those working with ”qualitative” approaches, we propose, would perhaps show that there are many similarities in practices of these two approaches. This is not to deny dissimilarities, or the different epistemic and ontic presuppositions that may be more or less strongly associated with the two different strands (see Goertz and Mahoney 2012 ). Our point is nonetheless that prejudices and preconceptions about researchers are unproductive, and that as other researchers have argued, differences may be exaggerated (e.g., Becker 1996 : 53, 2017 ; Marchel and Owens 2007 :303; Ragin 1994 ), and that a qualitative dimension is present in both kinds of work.

Several things follow from our findings. The most important result is the relation to quantitative research. In our analysis we have separated qualitative research from quantitative research. The point is not to label individual researchers, methods, projects, or works as either “quantitative” or “qualitative.” By analyzing, i.e., taking apart, the notions of quantitative and qualitative, we hope to have shown the elements of qualitative research. Our definition captures the elements, and how they, when combined in practice, generate understanding. As many of the quotations we have used suggest, one conclusion of our study holds that qualitative approaches are not inherently connected with a specific method. Put differently, none of the methods that are frequently labelled “qualitative,” such as interviews or participant observation, are inherently “qualitative.” What matters, given our definition, is whether one works qualitatively or quantitatively in the research process, until the results are produced. Consequently, our analysis also suggests that those researchers working with what in the literature and in jargon is often called “quantitative research” are almost bound to make use of what we have identified as qualitative elements in any research project. Our findings also suggest that many” quantitative” researchers, at least to some extent, are engaged with qualitative work, such as when research questions are developed, variables are constructed and combined, and hypotheses are formulated. Furthermore, a research project may hover between “qualitative” and “quantitative” or start out as “qualitative” and later move into a “quantitative” (a distinct strategy that is not similar to “mixed methods” or just simply combining induction and deduction). More generally speaking, the categories of “qualitative” and “quantitative,” unfortunately, often cover up practices, and it may lead to “camps” of researchers opposing one another. For example, regardless of the researcher is primarily oriented to “quantitative” or “qualitative” research, the role of theory is neglected (cf. Swedberg 2017 ). Our results open up for an interaction not characterized by differences, but by different emphasis, and similarities.

Let us take two examples to briefly indicate how qualitative elements can fruitfully be combined with quantitative. Franzosi ( 2010 ) has discussed the relations between quantitative and qualitative approaches, and more specifically the relation between words and numbers. He analyzes texts and argues that scientific meaning cannot be reduced to numbers. Put differently, the meaning of the numbers is to be understood by what is taken for granted, and what is part of the lifeworld (Schütz 1962 ). Franzosi shows how one can go about using qualitative and quantitative methods and data to address scientific questions analyzing violence in Italy at the time when fascism was rising (1919–1922). Aspers ( 2006 ) studied the meaning of fashion photographers. He uses an empirical phenomenological approach, and establishes meaning at the level of actors. In a second step this meaning, and the different ideal-typical photographers constructed as a result of participant observation and interviews, are tested using quantitative data from a database; in the first phase to verify the different ideal-types, in the second phase to use these types to establish new knowledge about the types. In both of these cases—and more examples can be found—authors move from qualitative data and try to keep the meaning established when using the quantitative data.

A second main result of our study is that a definition, and we provided one, offers a way for research to clarify, and even evaluate, what is done. Hence, our definition can guide researchers and students, informing them on how to think about concrete research problems they face, and to show what it means to get closer in a process in which new distinctions are made. The definition can also be used to evaluate the results, given that it is a standard of evaluation (cf. Hammersley 2007 ), to see whether new distinctions are made and whether this improves our understanding of what is researched, in addition to the evaluation of how the research was conducted. By making what is qualitative research explicit it becomes easier to communicate findings, and it is thereby much harder to fly under the radar with substandard research since there are standards of evaluation which make it easier to separate “good” from “not so good” qualitative research.

To conclude, our analysis, which ends with a definition of qualitative research can thus both address the “internal” issues of what is qualitative research, and the “external” critiques that make it harder to do qualitative research, to which both pressure from quantitative methods and general changes in society contribute.

Acknowledgements

Financial Support for this research is given by the European Research Council, CEV (263699). The authors are grateful to Susann Krieglsteiner for assistance in collecting the data. The paper has benefitted from the many useful comments by the three reviewers and the editor, comments by members of the Uppsala Laboratory of Economic Sociology, as well as Jukka Gronow, Sebastian Kohl, Marcin Serafin, Richard Swedberg, Anders Vassenden and Turid Rødne.

Biographies

is professor of sociology at the Department of Sociology, Uppsala University and Universität St. Gallen. His main focus is economic sociology, and in particular, markets. He has published numerous articles and books, including Orderly Fashion (Princeton University Press 2010), Markets (Polity Press 2011) and Re-Imagining Economic Sociology (edited with N. Dodd, Oxford University Press 2015). His book Ethnographic Methods (in Swedish) has already gone through several editions.

is associate professor of sociology at the Department of Media and Social Sciences, University of Stavanger. His research has been published in journals such as Social Psychology Quarterly, Sociological Theory, Teaching Sociology, and Music and Arts in Action. As an ethnographer he is working on a book on he social world of big-wave surfing.

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Contributor Information

Patrik Aspers, Email: [email protected] .

Ugo Corte, Email: [email protected] .

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Chapter 9. Reviewing the Literature

What is a “literature review”.

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

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

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

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

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

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

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

Examples of Literature Reviews

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

Reader-Friendly Example: The Power of Peers

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

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

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

Authoritative Academic Journal Example: Working Class Students’ College Expectations

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

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

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

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

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

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

Embracing Theory

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

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

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

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

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

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

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

Helpful Tips

How to maintain good notes for what your read.

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

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

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

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

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

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

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

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

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

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

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

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

Where to Start Looking for Literature

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

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

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

Keep a List of Your Keywords

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

Here’s an example:

Table 9.2. Keep a List of Your Keywords

Think Laterally

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

Read Outside the Canon

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

Consider Multiple Uses for Literature

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

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

Describing Gaps in the Literature

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

Use Concept Mapping

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

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

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

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

Don’t Treat This as a Chore

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

Supplement: Two More Literature Review Examples

Elites by harvey ( 2011 ).

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

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

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

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

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

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

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

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

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

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

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

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.

Archer Library

Qualitative research: literature review .

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Exploring the literature review 

Literature review model: 6 steps.

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

Your Literature Review

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

1. Select a Topic

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

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

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

Consider Purpose

What will your topic and research address?

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

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

★ Schedule a research appointment

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

2. Search the Literature

Collect & Select Data: Preview, select, and organize

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

Books & eBooks: Archer Library & OhioLINK

Databases: scholarly & practitioner journals.

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

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

Databases: Theses & Dissertations

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

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

Newspapers:  Databases & Internet

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

Search Strategies & Boolean Operators

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

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

Overview of boolean terms

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

Database Search Limiters

Database strategies for targeted search results.

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

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

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

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

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

★ Truncating Search Terms

Expanding your search term at the root.

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

Asterisk (*) Wildcard

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

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

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

★ EBSCO Databases & Google Drive

Tips for saving research directly to Google drive.

Researching in an EBSCO database?

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

EBSCO Databases & Google Drive

EBSCOHost Databases & Google Drive: Managing your Research

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

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

• EBSCOhost Databases & Google Scholar

Defining Literature Review

What is a literature review.

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

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

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

Recommended Reading

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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• How to Write a Literature Review | Guide, Examples, & Templates

How to Write a Literature Review | Guide, Examples, & Templates

Published on January 2, 2023 by Shona McCombes . Revised on September 11, 2023.

What is a literature review? A literature review is a survey of scholarly sources on a specific topic. It provides an overview of current knowledge, allowing you to identify relevant theories, methods, and gaps in the existing research that you can later apply to your paper, thesis, or dissertation topic .

There are five key steps to writing a literature review:

• Search for relevant literature
• Evaluate sources
• Identify themes, debates, and gaps
• Outline the structure
• Write your literature review

A good literature review doesn’t just summarize sources—it analyzes, synthesizes , and critically evaluates to give a clear picture of the state of knowledge on the subject.

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Table of contents

What is the purpose of a literature review, examples of literature reviews, step 1 – search for relevant literature, step 2 – evaluate and select sources, step 3 – identify themes, debates, and gaps, step 4 – outline your literature review’s structure, step 5 – write your literature review, free lecture slides, other interesting articles, frequently asked questions, introduction.

• Quick Run-through
• Step 1 & 2

When you write a thesis , dissertation , or research paper , you will likely have to conduct a literature review to situate your research within existing knowledge. The literature review gives you a chance to:

• Demonstrate your familiarity with the topic and its scholarly context
• Develop a theoretical framework and methodology for your research
• Position your work in relation to other researchers and theorists
• Show how your research addresses a gap or contributes to a debate
• Evaluate the current state of research and demonstrate your knowledge of the scholarly debates around your topic.

Writing literature reviews is a particularly important skill if you want to apply for graduate school or pursue a career in research. We’ve written a step-by-step guide that you can follow below.

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Writing literature reviews can be quite challenging! A good starting point could be to look at some examples, depending on what kind of literature review you’d like to write.

• Example literature review #1: “Why Do People Migrate? A Review of the Theoretical Literature” ( Theoretical literature review about the development of economic migration theory from the 1950s to today.)
• Example literature review #2: “Literature review as a research methodology: An overview and guidelines” ( Methodological literature review about interdisciplinary knowledge acquisition and production.)
• Example literature review #3: “The Use of Technology in English Language Learning: A Literature Review” ( Thematic literature review about the effects of technology on language acquisition.)
• Example literature review #4: “Learners’ Listening Comprehension Difficulties in English Language Learning: A Literature Review” ( Chronological literature review about how the concept of listening skills has changed over time.)

You can also check out our templates with literature review examples and sample outlines at the links below.

Download Word doc Download Google doc

Before you begin searching for literature, you need a clearly defined topic .

If you are writing the literature review section of a dissertation or research paper, you will search for literature related to your research problem and questions .

Make a list of keywords

Start by creating a list of keywords related to your research question. Include each of the key concepts or variables you’re interested in, and list any synonyms and related terms. You can add to this list as you discover new keywords in the process of your literature search.

• Social media, Facebook, Instagram, Twitter, Snapchat, TikTok
• Body image, self-perception, self-esteem, mental health
• Generation Z, teenagers, adolescents, youth

Search for relevant sources

Use your keywords to begin searching for sources. Some useful databases to search for journals and articles include:

• Your university’s library catalogue
• Google Scholar
• Project Muse (humanities and social sciences)
• Medline (life sciences and biomedicine)
• EconLit (economics)
• Inspec (physics, engineering and computer science)

You can also use boolean operators to help narrow down your search.

Make sure to read the abstract to find out whether an article is relevant to your question. When you find a useful book or article, you can check the bibliography to find other relevant sources.

You likely won’t be able to read absolutely everything that has been written on your topic, so it will be necessary to evaluate which sources are most relevant to your research question.

For each publication, ask yourself:

• What question or problem is the author addressing?
• What are the key concepts and how are they defined?
• What are the key theories, models, and methods?
• Does the research use established frameworks or take an innovative approach?
• What are the results and conclusions of the study?
• How does the publication relate to other literature in the field? Does it confirm, add to, or challenge established knowledge?
• What are the strengths and weaknesses of the research?

Make sure the sources you use are credible , and make sure you read any landmark studies and major theories in your field of research.

You can use our template to summarize and evaluate sources you’re thinking about using. Click on either button below to download.

Take notes and cite your sources

As you read, you should also begin the writing process. Take notes that you can later incorporate into the text of your literature review.

It is important to keep track of your sources with citations to avoid plagiarism . It can be helpful to make an annotated bibliography , where you compile full citation information and write a paragraph of summary and analysis for each source. This helps you remember what you read and saves time later in the process.

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To begin organizing your literature review’s argument and structure, be sure you understand the connections and relationships between the sources you’ve read. Based on your reading and notes, you can look for:

• Trends and patterns (in theory, method or results): do certain approaches become more or less popular over time?
• Themes: what questions or concepts recur across the literature?
• Debates, conflicts and contradictions: where do sources disagree?
• Pivotal publications: are there any influential theories or studies that changed the direction of the field?
• Gaps: what is missing from the literature? Are there weaknesses that need to be addressed?

This step will help you work out the structure of your literature review and (if applicable) show how your own research will contribute to existing knowledge.

• Most research has focused on young women.
• There is an increasing interest in the visual aspects of social media.
• But there is still a lack of robust research on highly visual platforms like Instagram and Snapchat—this is a gap that you could address in your own research.

There are various approaches to organizing the body of a literature review. Depending on the length of your literature review, you can combine several of these strategies (for example, your overall structure might be thematic, but each theme is discussed chronologically).

Chronological

The simplest approach is to trace the development of the topic over time. However, if you choose this strategy, be careful to avoid simply listing and summarizing sources in order.

Try to analyze patterns, turning points and key debates that have shaped the direction of the field. Give your interpretation of how and why certain developments occurred.

If you have found some recurring central themes, you can organize your literature review into subsections that address different aspects of the topic.

For example, if you are reviewing literature about inequalities in migrant health outcomes, key themes might include healthcare policy, language barriers, cultural attitudes, legal status, and economic access.

Methodological

If you draw your sources from different disciplines or fields that use a variety of research methods , you might want to compare the results and conclusions that emerge from different approaches. For example:

• Look at what results have emerged in qualitative versus quantitative research
• Discuss how the topic has been approached by empirical versus theoretical scholarship
• Divide the literature into sociological, historical, and cultural sources

Theoretical

A literature review is often the foundation for a theoretical framework . You can use it to discuss various theories, models, and definitions of key concepts.

You might argue for the relevance of a specific theoretical approach, or combine various theoretical concepts to create a framework for your research.

Like any other academic text , your literature review should have an introduction , a main body, and a conclusion . What you include in each depends on the objective of your literature review.

The introduction should clearly establish the focus and purpose of the literature review.

Depending on the length of your literature review, you might want to divide the body into subsections. You can use a subheading for each theme, time period, or methodological approach.

As you write, you can follow these tips:

• Summarize and synthesize: give an overview of the main points of each source and combine them into a coherent whole
• Analyze and interpret: don’t just paraphrase other researchers — add your own interpretations where possible, discussing the significance of findings in relation to the literature as a whole
• Critically evaluate: mention the strengths and weaknesses of your sources
• Write in well-structured paragraphs: use transition words and topic sentences to draw connections, comparisons and contrasts

In the conclusion, you should summarize the key findings you have taken from the literature and emphasize their significance.

When you’ve finished writing and revising your literature review, don’t forget to proofread thoroughly before submitting. Not a language expert? Check out Scribbr’s professional proofreading services !

This article has been adapted into lecture slides that you can use to teach your students about writing a literature review.

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

• Sampling methods
• Simple random sampling
• Stratified sampling
• Cluster sampling
• Likert scales
• Reproducibility

 Statistics

• Null hypothesis
• Statistical power
• Probability distribution
• Effect size
• Poisson distribution

Research bias

• Optimism bias
• Cognitive bias
• Implicit bias
• Hawthorne effect
• Anchoring bias
• Explicit bias

A literature review is a survey of scholarly sources (such as books, journal articles, and theses) related to a specific topic or research question .

It is often written as part of a thesis, dissertation , or research paper , in order to situate your work in relation to existing knowledge.

There are several reasons to conduct a literature review at the beginning of a research project:

• To familiarize yourself with the current state of knowledge on your topic
• To ensure that you’re not just repeating what others have already done
• To identify gaps in knowledge and unresolved problems that your research can address
• To develop your theoretical framework and methodology
• To provide an overview of the key findings and debates on the topic

Writing the literature review shows your reader how your work relates to existing research and what new insights it will contribute.

The literature review usually comes near the beginning of your thesis or dissertation . After the introduction , it grounds your research in a scholarly field and leads directly to your theoretical framework or methodology .

A literature review is a survey of credible sources on a topic, often used in dissertations , theses, and research papers . Literature reviews give an overview of knowledge on a subject, helping you identify relevant theories and methods, as well as gaps in existing research. Literature reviews are set up similarly to other  academic texts , with an introduction , a main body, and a conclusion .

An  annotated bibliography is a list of  source references that has a short description (called an annotation ) for each of the sources. It is often assigned as part of the research process for a  paper .  

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Article Contents

Introduction, when to use qualitative research, how to judge qualitative research, conclusions, authors' roles, conflict of interest.

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Qualitative research methods: when to use them and how to judge them

• Article contents
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K. Hammarberg, M. Kirkman, S. de Lacey, Qualitative research methods: when to use them and how to judge them, Human Reproduction , Volume 31, Issue 3, March 2016, Pages 498–501, https://doi.org/10.1093/humrep/dev334

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In March 2015, an impressive set of guidelines for best practice on how to incorporate psychosocial care in routine infertility care was published by the ESHRE Psychology and Counselling Guideline Development Group ( ESHRE Psychology and Counselling Guideline Development Group, 2015 ). The authors report that the guidelines are based on a comprehensive review of the literature and we congratulate them on their meticulous compilation of evidence into a clinically useful document. However, when we read the methodology section, we were baffled and disappointed to find that evidence from research using qualitative methods was not included in the formulation of the guidelines. Despite stating that ‘qualitative research has significant value to assess the lived experience of infertility and fertility treatment’, the group excluded this body of evidence because qualitative research is ‘not generally hypothesis-driven and not objective/neutral, as the researcher puts him/herself in the position of the participant to understand how the world is from the person's perspective’.

Qualitative and quantitative research methods are often juxtaposed as representing two different world views. In quantitative circles, qualitative research is commonly viewed with suspicion and considered lightweight because it involves small samples which may not be representative of the broader population, it is seen as not objective, and the results are assessed as biased by the researchers' own experiences or opinions. In qualitative circles, quantitative research can be dismissed as over-simplifying individual experience in the cause of generalisation, failing to acknowledge researcher biases and expectations in research design, and requiring guesswork to understand the human meaning of aggregate data.

As social scientists who investigate psychosocial aspects of human reproduction, we use qualitative and quantitative methods, separately or together, depending on the research question. The crucial part is to know when to use what method.

The peer-review process is a pillar of scientific publishing. One of the important roles of reviewers is to assess the scientific rigour of the studies from which authors draw their conclusions. If rigour is lacking, the paper should not be published. As with research using quantitative methods, research using qualitative methods is home to the good, the bad and the ugly. It is essential that reviewers know the difference. Rejection letters are hard to take but more often than not they are based on legitimate critique. However, from time to time it is obvious that the reviewer has little grasp of what constitutes rigour or quality in qualitative research. The first author (K.H.) recently submitted a paper that reported findings from a qualitative study about fertility-related knowledge and information-seeking behaviour among people of reproductive age. In the rejection letter one of the reviewers (not from Human Reproduction ) lamented, ‘Even for a qualitative study, I would expect that some form of confidence interval and paired t-tables analysis, etc. be used to analyse the significance of results'. This comment reveals the reviewer's inappropriate application to qualitative research of criteria relevant only to quantitative research.

In this commentary, we give illustrative examples of questions most appropriately answered using qualitative methods and provide general advice about how to appraise the scientific rigour of qualitative studies. We hope this will help the journal's reviewers and readers appreciate the legitimate place of qualitative research and ensure we do not throw the baby out with the bath water by excluding or rejecting papers simply because they report the results of qualitative studies.

In psychosocial research, ‘quantitative’ research methods are appropriate when ‘factual’ data are required to answer the research question; when general or probability information is sought on opinions, attitudes, views, beliefs or preferences; when variables can be isolated and defined; when variables can be linked to form hypotheses before data collection; and when the question or problem is known, clear and unambiguous. Quantitative methods can reveal, for example, what percentage of the population supports assisted conception, their distribution by age, marital status, residential area and so on, as well as changes from one survey to the next ( Kovacs et al. , 2012 ); the number of donors and donor siblings located by parents of donor-conceived children ( Freeman et al. , 2009 ); and the relationship between the attitude of donor-conceived people to learning of their donor insemination conception and their family ‘type’ (one or two parents, lesbian or heterosexual parents; Beeson et al. , 2011 ).

In contrast, ‘qualitative’ methods are used to answer questions about experience, meaning and perspective, most often from the standpoint of the participant. These data are usually not amenable to counting or measuring. Qualitative research techniques include ‘small-group discussions’ for investigating beliefs, attitudes and concepts of normative behaviour; ‘semi-structured interviews’, to seek views on a focused topic or, with key informants, for background information or an institutional perspective; ‘in-depth interviews’ to understand a condition, experience, or event from a personal perspective; and ‘analysis of texts and documents’, such as government reports, media articles, websites or diaries, to learn about distributed or private knowledge.

Qualitative methods have been used to reveal, for example, potential problems in implementing a proposed trial of elective single embryo transfer, where small-group discussions enabled staff to explain their own resistance, leading to an amended approach ( Porter and Bhattacharya, 2005 ). Small-group discussions among assisted reproductive technology (ART) counsellors were used to investigate how the welfare principle is interpreted and practised by health professionals who must apply it in ART ( de Lacey et al. , 2015 ). When legislative change meant that gamete donors could seek identifying details of people conceived from their gametes, parents needed advice on how best to tell their children. Small-group discussions were convened to ask adolescents (not known to be donor-conceived) to reflect on how they would prefer to be told ( Kirkman et al. , 2007 ).

When a population cannot be identified, such as anonymous sperm donors from the 1980s, a qualitative approach with wide publicity can reach people who do not usually volunteer for research and reveal (for example) their attitudes to proposed legislation to remove anonymity with retrospective effect ( Hammarberg et al. , 2014 ). When researchers invite people to talk about their reflections on experience, they can sometimes learn more than they set out to discover. In describing their responses to proposed legislative change, participants also talked about people conceived as a result of their donations, demonstrating various constructions and expectations of relationships ( Kirkman et al. , 2014 ).

Interviews with parents in lesbian-parented families generated insight into the diverse meanings of the sperm donor in the creation and life of the family ( Wyverkens et al. , 2014 ). Oral and written interviews also revealed the embarrassment and ambivalence surrounding sperm donors evident in participants in donor-assisted conception ( Kirkman, 2004 ). The way in which parents conceptualise unused embryos and why they discard rather than donate was explored and understood via in-depth interviews, showing how and why the meaning of those embryos changed with parenthood ( de Lacey, 2005 ). In-depth interviews were also used to establish the intricate understanding by embryo donors and recipients of the meaning of embryo donation and the families built as a result ( Goedeke et al. , 2015 ).

It is possible to combine quantitative and qualitative methods, although great care should be taken to ensure that the theory behind each method is compatible and that the methods are being used for appropriate reasons. The two methods can be used sequentially (first a quantitative then a qualitative study or vice versa), where the first approach is used to facilitate the design of the second; they can be used in parallel as different approaches to the same question; or a dominant method may be enriched with a small component of an alternative method (such as qualitative interviews ‘nested’ in a large survey). It is important to note that free text in surveys represents qualitative data but does not constitute qualitative research. Qualitative and quantitative methods may be used together for corroboration (hoping for similar outcomes from both methods), elaboration (using qualitative data to explain or interpret quantitative data, or to demonstrate how the quantitative findings apply in particular cases), complementarity (where the qualitative and quantitative results differ but generate complementary insights) or contradiction (where qualitative and quantitative data lead to different conclusions). Each has its advantages and challenges ( Brannen, 2005 ).

Qualitative research is gaining increased momentum in the clinical setting and carries different criteria for evaluating its rigour or quality. Quantitative studies generally involve the systematic collection of data about a phenomenon, using standardized measures and statistical analysis. In contrast, qualitative studies involve the systematic collection, organization, description and interpretation of textual, verbal or visual data. The particular approach taken determines to a certain extent the criteria used for judging the quality of the report. However, research using qualitative methods can be evaluated ( Dixon-Woods et al. , 2006 ; Young et al. , 2014 ) and there are some generic guidelines for assessing qualitative research ( Kitto et al. , 2008 ).

Although the terms ‘reliability’ and ‘validity’ are contentious among qualitative researchers ( Lincoln and Guba, 1985 ) with some preferring ‘verification’, research integrity and robustness are as important in qualitative studies as they are in other forms of research. It is widely accepted that qualitative research should be ethical, important, intelligibly described, and use appropriate and rigorous methods ( Cohen and Crabtree, 2008 ). In research investigating data that can be counted or measured, replicability is essential. When other kinds of data are gathered in order to answer questions of personal or social meaning, we need to be able to capture real-life experiences, which cannot be identical from one person to the next. Furthermore, meaning is culturally determined and subject to evolutionary change. The way of explaining a phenomenon—such as what it means to use donated gametes—will vary, for example, according to the cultural significance of ‘blood’ or genes, interpretations of marital infidelity and religious constructs of sexual relationships and families. Culture may apply to a country, a community, or other actual or virtual group, and a person may be engaged at various levels of culture. In identifying meaning for members of a particular group, consistency may indeed be found from one research project to another. However, individuals within a cultural group may present different experiences and perceptions or transgress cultural expectations. That does not make them ‘wrong’ or invalidate the research. Rather, it offers insight into diversity and adds a piece to the puzzle to which other researchers also contribute.

In qualitative research the objective stance is obsolete, the researcher is the instrument, and ‘subjects’ become ‘participants’ who may contribute to data interpretation and analysis ( Denzin and Lincoln, 1998 ). Qualitative researchers defend the integrity of their work by different means: trustworthiness, credibility, applicability and consistency are the evaluative criteria ( Leininger, 1994 ).

Trustworthiness

A report of a qualitative study should contain the same robust procedural description as any other study. The purpose of the research, how it was conducted, procedural decisions, and details of data generation and management should be transparent and explicit. A reviewer should be able to follow the progression of events and decisions and understand their logic because there is adequate description, explanation and justification of the methodology and methods ( Kitto et al. , 2008 )

Credibility

Credibility is the criterion for evaluating the truth value or internal validity of qualitative research. A qualitative study is credible when its results, presented with adequate descriptions of context, are recognizable to people who share the experience and those who care for or treat them. As the instrument in qualitative research, the researcher defends its credibility through practices such as reflexivity (reflection on the influence of the researcher on the research), triangulation (where appropriate, answering the research question in several ways, such as through interviews, observation and documentary analysis) and substantial description of the interpretation process; verbatim quotations from the data are supplied to illustrate and support their interpretations ( Sandelowski, 1986 ). Where excerpts of data and interpretations are incongruent, the credibility of the study is in doubt.

Applicability

Applicability, or transferability of the research findings, is the criterion for evaluating external validity. A study is considered to meet the criterion of applicability when its findings can fit into contexts outside the study situation and when clinicians and researchers view the findings as meaningful and applicable in their own experiences.

Larger sample sizes do not produce greater applicability. Depth may be sacrificed to breadth or there may be too much data for adequate analysis. Sample sizes in qualitative research are typically small. The term ‘saturation’ is often used in reference to decisions about sample size in research using qualitative methods. Emerging from grounded theory, where filling theoretical categories is considered essential to the robustness of the developing theory, data saturation has been expanded to describe a situation where data tend towards repetition or where data cease to offer new directions and raise new questions ( Charmaz, 2005 ). However, the legitimacy of saturation as a generic marker of sampling adequacy has been questioned ( O'Reilly and Parker, 2013 ). Caution must be exercised to ensure that a commitment to saturation does not assume an ‘essence’ of an experience in which limited diversity is anticipated; each account is likely to be subtly different and each ‘sample’ will contribute to knowledge without telling the whole story. Increasingly, it is expected that researchers will report the kind of saturation they have applied and their criteria for recognising its achievement; an assessor will need to judge whether the choice is appropriate and consistent with the theoretical context within which the research has been conducted.

Sampling strategies are usually purposive, convenient, theoretical or snowballed. Maximum variation sampling may be used to seek representation of diverse perspectives on the topic. Homogeneous sampling may be used to recruit a group of participants with specified criteria. The threat of bias is irrelevant; participants are recruited and selected specifically because they can illuminate the phenomenon being studied. Rather than being predetermined by statistical power analysis, qualitative study samples are dependent on the nature of the data, the availability of participants and where those data take the investigator. Multiple data collections may also take place to obtain maximum insight into sensitive topics. For instance, the question of how decisions are made for embryo disposition may involve sampling within the patient group as well as from scientists, clinicians, counsellors and clinic administrators.

Consistency

Consistency, or dependability of the results, is the criterion for assessing reliability. This does not mean that the same result would necessarily be found in other contexts but that, given the same data, other researchers would find similar patterns. Researchers often seek maximum variation in the experience of a phenomenon, not only to illuminate it but also to discourage fulfilment of limited researcher expectations (for example, negative cases or instances that do not fit the emerging interpretation or theory should be actively sought and explored). Qualitative researchers sometimes describe the processes by which verification of the theoretical findings by another team member takes place ( Morse and Richards, 2002 ).

Research that uses qualitative methods is not, as it seems sometimes to be represented, the easy option, nor is it a collation of anecdotes. It usually involves a complex theoretical or philosophical framework. Rigorous analysis is conducted without the aid of straightforward mathematical rules. Researchers must demonstrate the validity of their analysis and conclusions, resulting in longer papers and occasional frustration with the word limits of appropriate journals. Nevertheless, we need the different kinds of evidence that is generated by qualitative methods. The experience of health, illness and medical intervention cannot always be counted and measured; researchers need to understand what they mean to individuals and groups. Knowledge gained from qualitative research methods can inform clinical practice, indicate how to support people living with chronic conditions and contribute to community education and awareness about people who are (for example) experiencing infertility or using assisted conception.

Each author drafted a section of the manuscript and the manuscript as a whole was reviewed and revised by all authors in consultation.

No external funding was either sought or obtained for this study.

The authors have no conflicts of interest to declare.

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A qualitative study of rural healthcare providers’ views of social, cultural, and programmatic barriers to healthcare access

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Ensuring access to healthcare is a complex, multi-dimensional health challenge. Since the inception of the coronavirus pandemic, this challenge is more pressing. Some dimensions of access are difficult to quantify, namely characteristics that influence healthcare services to be both acceptable and appropriate. These link to a patient’s acceptance of services that they are to receive and ensuring appropriate fit between services and a patient’s specific healthcare needs. These dimensions of access are particularly evident in rural health systems where additional structural barriers make accessing healthcare more difficult. Thus, it is important to examine healthcare access barriers in rural-specific areas to understand their origin and implications for resolution.

We used qualitative methods and a convenience sample of healthcare providers who currently practice in the rural US state of Montana. Our sample included 12 healthcare providers from diverse training backgrounds and specialties. All were decision-makers in the development or revision of patients’ treatment plans. Semi-structured interviews and content analysis were used to explore barriers–appropriateness and acceptability–to healthcare access in their patient populations. Our analysis was both deductive and inductive and focused on three analytic domains: cultural considerations, patient-provider communication, and provider-provider communication. Member checks ensured credibility and trustworthiness of our findings.

Five key themes emerged from analysis: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US.

Conclusions

Inadequate access to healthcare is an issue in the US, particularly in rural areas. Rural healthcare consumers compose a hard-to-reach patient population. Too few providers exist to meet population health needs, and fragmented communication impairs rural health systems’ ability to function. These issues exacerbate the difficulty of ensuring acceptable and appropriate delivery of healthcare services, which compound all other barriers to healthcare access for rural residents. Each dimension of access must be monitored to improve patient experiences and outcomes for rural Americans.

Peer Review reports

Unequal access to healthcare services is an important element of health disparities in the United States [ 1 ], and there remains much about access that is not fully understood. The lack of understanding is attributable, in part, to the lack of uniformity in how access is defined and evaluated, and the extent to which access is often oversimplified in research [ 2 ]. Subsequently, attempts to address population-level barriers to healthcare access are insufficient, and access remains an unresolved, complex health challenge [ 3 , 4 , 5 ]. This paper presents a study that aims to explore some of the less well studied barriers to healthcare access, particularly those that influence healthcare acceptability and appropriateness.

In truth, healthcare access entails a complicated calculus that combines characteristics of individuals, their households, and their social and physical environments with characteristics of healthcare delivery systems, organizations, and healthcare providers. For one to fully ‘access’ healthcare, they must have the means to identify their healthcare needs and have available to them care providers and the facilities where they work. Further, patients must then reach, obtain, and use the healthcare services in order to have their healthcare needs fulfilled. Levesque and colleagues critically examined access conceptualizations in 2013 and synthesized all ways in which access to healthcare was previously characterized; Levesque et al. proposed five dimensions of access: approachability, acceptability, availability, affordability and appropriateness [ 2 ]. These refer to the ability to perceive, seek, reach, pay for, and engage in services, respectively.

According to Levesque et al.’s framework, the five dimensions combine to facilitate access to care or serve as barriers. Approachability indicates that people facing health needs understand that healthcare services exist and might be helpful. Acceptability represents whether patients see healthcare services as consistent or inconsistent with their own social and cultural values and worldviews. Availability indicates that healthcare services are reached both physically and in a timely manner. Affordability simplifies one’s capacity to pay for healthcare services without compromising basic necessities, and finally, appropriateness represents the fit between healthcare services and a patient’s specific healthcare needs [ 2 ]. This study focused on the acceptability and appropriateness dimensions of access.

Before the novel coronavirus (SARS-CoV-2; COVID-19) pandemic, approximately 13.3% of adults in the US did not have a usual source of healthcare [ 6 ]. Millions more did not utilize services regularly, and close to two-thirds reported that they would be debilitated by an unexpected medical bill [ 7 , 8 , 9 ]. Findings like these emphasized a fragility in the financial security of the American population [ 10 ]. These concerns were exacerbated by the pandemic when a sudden surge in unemployment increased un- and under-insurance rates [ 11 ]. Indeed, employer-sponsored insurance covers close to half of Americans’ total cost of illness [ 12 ]. Unemployment linked to COVID-19 cut off the lone outlet to healthcare access for many. Health-related financial concerns expanded beyond individuals, as healthcare organizations were unequipped to manage a simultaneous increase in demand for specialized healthcare services and a steep drop off for routine revenue-generating healthcare services [ 13 ]. These consequences of the COVID-19 pandemic all put additional, unexpected pressure on an already fragmented US healthcare system.

Other structural barriers to healthcare access exist in relation to the rural–urban divide. Less than 10% of US healthcare resources are located in rural areas where approximately 20% of the American population resides [ 14 ]. In a country with substantially fewer providers per capita compared to many other developed countries, persons in rural areas experience uniquely pressing healthcare provider shortages [ 15 , 16 ]. Rural inhabitants also tend to have lower household income, higher rates of un- or under-insurance, and more difficulty with travel to healthcare clinics than urban dwellers [ 17 ]. Subsequently, persons in rural communities use healthcare services at lower rates, and potentially preventable hospitalizations are more prevalent [ 18 ]. This disparity often leads rural residents to use services primarily for more urgent needs and less so for routine care [ 19 , 20 , 21 ].

The differences in how rural and urban healthcare systems function warranted a federal initiative to focus exclusively on rural health priorities and serve as counterpart to Healthy People objectives [ 22 ]. The rural determinants of health, a more specific expression of general social determinants, add issues of geography and topography to the well-documented social, economic and political factors that influence all Americans’ access to healthcare [ 23 ]. As a result, access is consistently regarded as a top priority in rural areas, and many research efforts have explored the intersection between access and rurality, namely within its less understood dimensions (acceptability and appropriateness) [ 22 ].

Acceptability-related barriers to care

Acceptability represents the dimension of healthcare access that affects a patient’s ability to seek healthcare, particularly linked to one’s professional values, norms and culture [ 2 ]. Access to health information is an influential factor for acceptable healthcare and is essential to promote and maintain a healthy population [ 24 ]. According to the Centers for Disease Control and Prevention, health literacy or a high ‘health IQ’ is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others, which impacts healthcare use and system navigation [ 25 ]. The literature indicates that lower levels of health literacy contribute to health disparities among rural populations [ 26 , 27 , 28 ]. Evidence points to a need for effective health communication between healthcare organizations and patients to improve health literacy [ 24 ]. However, little research has been done in this area, particularly as it relates to technologically-based interventions to disseminate health information [ 29 ].

Stigma, an undesirable position of perceived diminished status in an individual’s social position, is another challenge that influences healthcare acceptability [ 30 ]. Those who may experience stigma fear negative social consequences in relation to care seeking. They are more likely to delay seeking care, especially among ethnic minority populations [ 31 , 32 ]. Social media presents opportunities for the dissemination of misleading medical information; this runs further risk for stigma [ 33 ]. Stigma is difficult to undo, but research has shown that developing a positive relationship with a healthcare provider or organization can work to reduce stigma among patients, thus promoting healthcare acceptability [ 34 ].

A provider’s attempts to engage patients and empower them to be active decision-makers regarding their treatment has also been shown to improve healthcare acceptability. One study found that patients with heart disease who completed a daily diary of weight and self-assessment of symptoms, per correspondence with their provider, had better care outcomes than those who did not [ 35 ]. Engaging with household family members and involved community healers also mitigates barriers to care, emphasizing the importance of a team-based approach that extends beyond those who typically provide healthcare services [ 36 , 37 ]. One study, for instance, explored how individuals closest to a pregnant woman affect the woman’s decision to seek maternity care; partners, female relatives, and community health-workers were among the most influential in promoting negative views, all of which reduced a woman’s likelihood to access care [ 38 ].

Appropriateness-related barriers to care

Appropriateness marks the dimension of healthcare access that affects a patient’s ability to engage, and according to Levesque et al., is of relevance once all other dimensions (the ability to perceive, seek, reach and pay for) are achieved [ 2 ]. The ability to engage in healthcare is influenced by a patient’s level of empowerment, adherence to information, and support received by their healthcare provider. Thus, barriers to healthcare access that relate to appropriateness are often those that indicate a breakdown in communication between a patient with their healthcare provider. Such breakdown can involve a patient experiencing miscommunication, confrontation, and/or a discrepancy between their provider’s goals and their own goals for healthcare. Appropriateness represents a dimension of healthcare access that is widely acknowledged as an area in need of improvement, which indicates a need to rethink how healthcare providers and organizations can adapt to serve the healthcare needs of their communities [ 39 ]. This is especially true for rural, ethnic minority populations, which disproportionately experience an abundance of other barriers to healthcare access. Culturally appropriate care is especially important for members of minority populations [ 40 , 41 , 42 ]. Ultimately, patients value a patient-provider relationship characterized by a welcoming, non-judgmental atmosphere [ 43 , 44 ]. In rural settings especially, level of trust and familiarity are common factors that affect service utilization [ 45 ]. Evidence suggests that kind treatment by a healthcare provider who promotes patient-centered care can have a greater overall effect on a patient’s experience than a provider’s degree of medical knowledge or use of modern equipment [ 46 ]. Of course, investing the time needed to nurture close and caring interpersonal connections is particularly difficult in under-resourced, time-pressured rural health systems [ 47 , 48 ].

The most effective way to evaluate access to healthcare largely depends on which dimensions are explored. For instance, a population-based survey can be used to measure the barrier of healthcare affordability. Survey questions can inquire directly about health insurance coverage, care-related financial burden, concern about healthcare costs, and the feared financial impacts of illness and/or disability. Many national organizations have employed such surveys to measure affordability-related barriers to healthcare. For example, a question may ask explicitly about financial concerns: ‘If you get sick or have an accident, how worried are you that you will not be able to pay your medical bills?’ [ 49 ]. Approachability and availability dimensions of access are also studied using quantitative analysis of survey questions, such as ‘Is there a place that you usually go to when you are sick or need advice about your health?’ or ‘Have you ever delayed getting medical care because you couldn’t get through on the telephone?’ In contrast, the remaining two dimensions–acceptability and appropriateness–require a qualitative approach, as the social and cultural factors that determine a patient’s likelihood of accepting aspects of the services that are to be received (acceptability) and the fit between those services and the patient’s specific healthcare needs (appropriateness) can be more abstract [ 50 , 51 ]. In social science, qualitative methods are appropriate to generate knowledge of what social events mean to individuals and how those individuals interact within them; these methods allow for an exploration of depth rather than breadth [ 52 , 53 ]. Qualitative methods, therefore, are appropriate tools for understanding the depth of healthcare providers’ experiences in the inherently social context of seeking and engaging in healthcare.

In sum, acceptability- and appropriateness-related barriers to healthcare access are multi-layered, complex and abundant. Ensuring access becomes even more challenging if structural barriers to access are factored in. In this study, we aimed to explore barriers to healthcare access among persons in Montana, a historically underserved, under-resourced, rural region of the US. Montana is the fourth largest and third least densely populated state in the country; more than 80% of Montana counties are classified as non-core (the lowest level of urban/rural classification), and over 90% are designated as health professional shortage areas [ 54 , 55 ]. Qualitative methods supported our inquiry to explore barriers to healthcare access related to acceptability and appropriateness.

Participants

Qualitative methods were utilized for this interpretive, exploratory study because knowledge regarding barriers to healthcare access within Montana’s rural health systems is limited. We chose Montana healthcare providers, rather than patients, as the population of interest so we may explore barriers to healthcare access from the perspective of those who serve many persons in rural settings. Inclusion criteria required study participants to provide direct healthcare to patients at least one-half of their time. We defined ‘provider’ as a healthcare organization employee with clinical decision-making power and the qualifications to develop or revise patients’ treatment plans. In an attempt to capture a group of providers with diverse experience, we included providers across several types and specialties. These included advanced practice registered nurses (APRNs), physicians (MDs and DOs), and physician assistants (PAs) who worked in critical care medicine, emergency medicine, family medicine, hospital medicine, internal medicine, pain medicine, palliative medicine, pediatrics, psychiatry, and urgent care medicine. We also included licensed clinical social workers (LCSWs) and clinical psychologists who specialize in behavioral healthcare provision.

Recruitment and Data Collection

We recruited participants via email using a snowball sampling approach [ 56 ]. We opted for this approach because of its effectiveness in time-pressured contexts, such as the COVID-19 pandemic, which has made healthcare provider populations hard to reach [ 57 ]. Considering additional constraints with the pandemic and the rural nature of Montana, interviews were administered virtually via Zoom video or telephone conferencing with Zoom’s audio recording function enabled. All interviews were conducted by the first author between January and September 2021. The average length of interviews was 50 min, ranging from 35 to 70 min. There were occasional challenges experienced during interviews (poor cell phone reception from participants, dropped calls), in which case the interviewer remained on the line until adequate communication was resumed. All interviews were included for analysis and transcribed verbatim into NVivo Version 12 software. All qualitative data were saved and stored on a password-protected University of Montana server. Hard-copy field notes were securely stored in a locked office on the university’s main campus.

Data analysis included a deductive followed by an inductive approach. This dual analysis adheres to Levesque’s framework for qualitative methods, which is discussed in the Definition of Analytic Domains sub-section below. Original synthesis of the literature informed the development of our initial deductive codebook. The deductive approach was derived from a theory-driven hypothesis, which consisted of synthesizing previous research findings regarding acceptability- and appropriateness-related barriers to care. Although the locations, patient populations and specific type of healthcare services varied by study in the existing literature, several recurring barriers to healthcare access were identified. We then operationalized three analytic domains based on these findings: cultural considerations, patient-provider communication, and provider-provider communication. These domains were chosen for two reasons: 1) the terms ‘culture’ and ‘communication’ were the most frequently documented characteristics across the studies examined, and 2) they each align closely with the acceptability and appropriateness dimensions of access to healthcare, respectively. In addition, ‘culture’ is included in the definition of acceptability and ‘communication’ is a quintessential aspect of appropriateness. These domains guided the deductive portion of our analysis, which facilitated the development of an interview guide used for this study.

Interviews were semi-structured to allow broad interpretations from participants and expand the open-ended characterization of study findings. Data were analyzed through a flexible coding approach proposed by Deterding and Waters [ 58 ]. Qualitative content analysis was used, a method particularly beneficial for analyzing large amounts of qualitative data collected through interviews that offers possibility of quantifying categories to identify emerging themes [ 52 , 59 ]. After fifty percent of data were analyzed, we used an inductive approach as a formative check and repeated until data saturation, or the point at which no new information was gathered in interviews [ 60 ]. At each point of inductive analysis, interview questions were added, removed, or revised in consideration of findings gathered [ 61 ]. The Standards for Reporting Qualitative Research (SRQR) was used for reporting all qualitative data for this study [ 62 ]. The first and third authors served as primary and secondary analysts of the qualitative data and collaborated to triangulate these findings. An audit approach was employed, which consisted of coding completed by the first author and then reviewed by the third author. After analyses were complete, member checks ensured credibility and trustworthiness of findings [ 63 ]. Member checks consisted of contacting each study participant to explain the study’s findings; one-third of participants responded and confirmed all findings. All study procedures were reviewed and approved by the Human Subjects Committee of the authors’ institution’s Institutional Review Board.

Definitions of Analytic Domains

Cultural considerations.

Western health systems often fail to consider aspects of patients’ cultural perspectives and histories. This can manifest in the form of a providers’ lack of cultural humility. Cultural humility is a process of preventing imposition of one’s worldview and cultural beliefs on others and recognizing that everyone’s conception of the world is valid. Humility cultivates sensitive approaches in treating patients [ 64 ]. A lack of cultural humility impedes the delivery of acceptable and appropriate healthcare [ 65 ], which can involve low empathy or respect for patients, or dismissal of culture and traditions as superstitions that interfere with standard treatments [ 66 , 67 ]. Ensuring cultural humility among all healthcare employees is a step toward optimal healthcare delivery. Cultural humility is often accomplished through training that can be tailored to particular cultural- or gender-specific populations [ 68 , 69 ]. Since cultural identities and humility have been marked as factors that can heavily influence patients’ access to care, cultural considerations composed our first analytic domain. To assess this domain, we asked participants how they address the unique needs of their patients, how they react when they observe a cultural behavior or attitude from a patient that may not directly align with their treatment plan, and if they have received any multicultural training or training on cultural considerations in their current role.

Patient-provider communication

Other barriers to healthcare access can be linked to ineffective patient-provider communication. Patients who do not feel involved in healthcare decisions are less likely to adhere to treatment recommendations [ 70 ]. Patients who experience communication difficulties with providers may feel coerced, which generates disempowerment and leads patients to employ more covert ways of engagement [ 71 , 72 ]. Language barriers can further compromise communication and hinder outcomes or patient progress [ 73 , 74 ]. Any miscommunication between a patient and provider can affect one’s access to healthcare, namely affecting appropriateness-related barriers. For these reasons, patient-provider communication composed our second analytic domain. We asked participants to highlight the challenges they experience when communicating with their patients, how those complications are addressed, and how communication strategies inform confidentiality in their practice. Confidentiality is a core ethical principle in healthcare, especially in rural areas that have smaller, interconnected patient populations [ 75 ].

Provider-Provider Communication

A patient’s journey through the healthcare system necessitates sufficient correspondence between patients, primary, and secondary providers after discharge and care encounters [ 76 ]. Inter-provider and patient-provider communication are areas of healthcare that are acknowledged to have some gaps. Inconsistent mechanisms for follow up communication with patients in primary care have been documented and emphasized as a concern among those with chronic illness who require close monitoring [ 68 , 77 ]. Similar inconsistencies exist between providers, which can lead to unclear care goals, extended hospital stays, and increased medical costs [ 78 ]. For these reasons, provider-provider communication composed our third analytic domain. We asked participants to describe the approaches they take to streamline communication after a patient’s hospital visit, the methods they use to ensure collaborative communication between primary or secondary providers, and where communication challenges exist.

Healthcare provider characteristics

Our sample included 12 providers: four in family medicine (1 MD, 1 DO, 1 PA & 1 APRN), three in pediatrics (2 MD with specialty in hospital medicine & 1 DO), three in palliative medicine (2 MDs & 1 APRN with specialty in wound care), one in critical care medicine (DO with specialty in pediatric pulmonology) and one in behavioral health (1 LCSW with specialty in trauma). Our participants averaged 9 years (range 2–15) as a healthcare provider; most reported more than 5 years in their current professional role. The diversity of participants extended to their patient populations as well, with each participant reporting a unique distribution of age, race and level of medical complexity among their patients. Most participants reported that a portion of their patients travel up to five hours, sometimes across county- or state-lines, to receive care.

Theme 1: A friction exists between aspects of patients’ rural identities and healthcare systems

Our participants comprised a collection of medical professions and reported variability among health-related reasons their patients seek care. However, most participants acknowledged similar characteristics that influence their patients’ challenges to healthcare access. These identified factors formed categories from which the first theme emerged. There exists a great deal of ‘rugged individualism’ among Montanans, which reflects a self-sufficient and self-reliant way of life. Stoicism marked a primary factor to characterize this quality. One participant explained:

True Montanans are difficult to treat medically because they tend to be a tough group. They don’t see doctors. They don’t want to go, and they don’t want to be sick. That’s an aspect of Montana that makes health culture a little bit difficult.

Another participant echoed this finding by stating:

The backwoods Montana range guy who has an identity of being strong and independent probably doesn’t seek out a lot of medical care or take a lot of medications. Their sense of vitality, independence and identity really come from being able to take care and rely on themselves. When that is threatened, that’s going to create a unique experience of illness.

Similar responses were shared by all twelve participants; stoicism seemed to be heavily embedded in many patient populations in Montana and serves as a key determinant of healthcare acceptability. There are additional factors, however, that may interact with stoicism but are multiply determined. Stigma is an example of this, presented in this context as one’s concern about judgement by the healthcare system. Respondents were openly critical of this perception of the healthcare system as it was widely discussed in interviews. One participant stated:

There is a real perception of a punitive nature in the medical community, particularly if I observe a health issue other than the primary reason for one’s hospital visit, whether that may be predicated on medical neglect, delay of care, or something that may warrant a report to social services. For many of the patients and families I see, it’s not a positive experience and one that is sometimes an uphill barrier that I work hard to circumnavigate.

Analysis of these factors suggest that low use of healthcare services may link to several characteristics, including access problems. Separately, a patient’s perceived stigma from healthcare providers may also impact a patient’s willingness to receive services. One participant put it best by stating

Sometimes, families assume that I didn’t want to see them because they will come in for follow up to meet with me but end up meeting with another provider, which is frustrating because I want to maintain patients on my panel but available time and resource occasionally limits me from doing so. It could be really hard adapting to those needs on the fly, but it’s an honest miss.

When a patient arrives for a healthcare visit and experiences this frustration, it may elicit a patient’s perceptions of neglect or disorganization. This ‘honest miss’ may, in turn, exacerbate other acceptable-related barriers to care.

Theme 2: Facilitating access to healthcare requires application of and respect for cultural differences

The biomedical model is the standard of care utilized in Western medicine [ 79 , 80 ]. However, the US comprises people with diverse social and cultural identities that may not directly align with Western conceptions of health and wellness. Approximately 11.5% of the Montana population falls within an ethnic minority group. 6.4% are of American Indian or Alaska Native origin, 0.5% are of Black or African American origin, 0.8% are of Asian origin and 3.8% are of multiple or other origins. [ 81 ]. Cultural insensitivity is acknowledged in health services research as an active deterrent for appropriate healthcare delivery [ 65 ]. Participants for this study were asked how they react when a patient brings up a cultural attitude or behavior that may impact the proposed treatment plan. Eight participants noted a necessity for humility when this occurs. One participant conceptualized this by stating:

When this happens, I learn about individuals and a way of life that is different to the way I grew up. There is a lot of beauty and health in a non-patriarchal, non-dominating, non-sexist framework, and when we can engage in such, it is really expansive for my own learning process.

The participants who expressed humility emphasized that it is best to work in tandem with their patient, congruently. Especially for those with contrasting worldviews, a provider and a patient working as a team poses an opportunity to develop trust. Without it, a patient can easily fall out of the system, further hindering their ability to access healthcare services in the future. One participant stated:

The approach that ends up being successful for a lot of patients is when we understand their modalities, and they have a sense we understand those things. We have to show understanding and they have to trust. From there, we can make recommendations to help get them there, not decisions for them to obey, rather views based on our experiences and understanding of medicine.

Curiosity was another reaction noted by a handful of participants. One participant said:

I believe patients and their caregivers can be engaged and loving in different ways that don’t always follow the prescribed approach in the ways I’ve been trained, but that doesn’t necessarily mean that they are detrimental. I love what I do, and I love learning new things or new approaches, but I also love being surprised. My style of medicine is not to predict peoples’ lives, rather to empower and support what makes life meaningful for them.

Participants mentioned several other characteristics that they use in practice to prevent cultural insensitivity and support a collaborative approach to healthcare. Table 1 lists these facilitating characteristics and quotes to explain the substance of their benefit.

Consensus among participants indicated that the use of these protective factors to promote cultural sensitivity and apply them in practice is not standardized. When asked, all but two participants said they had not received any culturally-based training since beginning their practice. Instead, they referred to developing skills through “on the job training” or “off the cuff learning.” The general way of medicine, one participant remarked, was to “throw you to the fire.” This suggested that use of standardized cultural humility training modules for healthcare providers was not common practice. Many attributed this to time constraints.

Individual efforts to gain culturally appropriate skills or enhance cultural humility were mentioned, however. For example, three participants reported that they attended medical conferences to discuss cultural challenges within medicine, one participant sought out cultural education within their organization, and another was invited by Native American community members to engage in traditional peace ceremonies. Participants described these additional efforts as uncommon and outside the parameters of a provider’s job responsibilities, as they require time commitments without compensation.

Additionally, eight participants said they share their personal contact information with patients so they may call them directly for medical needs. The conditions and frequency with which this is done was variable and more common among providers in specialized areas of medicine or those who described having a manageable patient panel. All who reported that they shared their personal contact information described it as an aspect of rural health service delivery that is atypical in other, non-rural healthcare systems.

Theme 3: Communication between healthcare providers is systematically fragmented

Healthcare is complex and multi-disciplinary, and patients’ treatment is rarely overseen by a single provider [ 82 ]. The array of provider types and specialties is vast, as is the range of responsibilities ascribed to providers. Thus, open communication among providers both within and between healthcare systems is vital for the success of collaborative healthcare [ 83 ]. Without effective communication achieved between healthcare providers, the appropriate delivery of healthcare services may be become compromised. Our participants noted that they face multiple challenges that complicate communication with other providers. Miscommunication between departments, often implicating the Emergency Department (ED), was a recurring point noted among participants. One participant who is a primary care physician said:

If one of my patients goes to the ER, I don’t always get the notes. They’re supposed to send them to the patient’s primary care doc. The same thing happens with general admissions, but again, I often find out from somebody else that my patient was admitted to the hospital.

This failure to communicate can negatively impact the patient, particularly if time sensitivity or medical complexity is essential to treatment. A patient’s primary care physician is the most accurate source of their medical history; without an effective way to obtain and synthesize a patient’s health information, there may be increased risk of medical error. One participant in a specialty field stated:

One of the biggest barriers I see is obtaining a concise description of a patient’s history and needs. You can imagine if you’re a mom and you’ve got a complicated kid. You head to the ER. The ER doc looks at you with really wide eyes, not knowing how to get information about your child that’s really important.

This concern was highlighted with a specific example from a different participant:

I have been unable to troubleshoot instances when I send people to the ER with a pretty clear indication for admission, and then they’re sent home. For instance, I had an older fellow with pretty severe chronic kidney disease. He presented to another practitioner in my office with shortness of breath and swelling and appeared to have newly onset decompensated heart failure. When I figured this out, I sent him to the ER, called and gave my report. The patient later came back for follow up to find out not only that they had not been admitted but they lost no weight with outpatient dialysis . I feel like a real opportunity was missed to try to optimize the care of the patient simply because there was poor communication between myself and the ER. This poor guy… He ended up going to the ER four times before he got admitted for COVID-19.

In some cases, communication breakdown was reported as the sole cause of a poor outcome. When communication is effective, each essential member of the healthcare team is engaged and collaborating with the same information. Some participants called this process ‘rounds’ when a regularly scheduled meeting is staged between a group of providers to ensure access to accurate patient information. Accurate communication may also help build trust and improve a patient’s experience. In contrast, ineffective communication can result in poor clarity regarding providers’ responsibilities or lost information. Appropriate delivery of healthcare considers the fit between providers and a patient’s specific healthcare needs; the factors noted here suggest that provider-provider miscommunication can adversely affect this dimension of healthcare access.

Another important mechanism of communication is the sharing of electronic medical records (EMRs), a process that continues to shift with technological advances. Innovation is still recent enough, however, for several of our study participants to be able to recall a time when paper charts were standard. Widespread adoption and embrace of the improvements inherent in electronic medical records expanded in the late 2000’s [ 84 ]. EMRs vastly improved the ability to retain, organize, safeguard, and transfer health information. Every participant highlighted EMRs at one point or another and often did so with an underlying sense of anger or frustration. Systematic issues and problems with EMRs were discussed. One participant provided historical context to such records:

Years back, the government aimed to buy an electronic medical record system, whichever was the best, and a number of companies created their own. Each were a reasonable system, so they all got their checks and now we have four completely separate operating systems that do not talk to each other. The idea was to make a router or some type of relay that can share information back and forth. There was no money in that though, so of course, no one did anything about it. Depending on what hospital, clinic or agency you work for, you will most likely work within one of these systems. It was a great idea; it just didn’t get finished.

Seven participants confirmed these points and their impacts on making coordination more difficult, relying on outdated communication strategies more often than not. Many noted this even occurs between facilities within the same city and in separate small metropolitan areas across the state. One participant said:

If my hospital decides to contract with one EMR and the hospital across town contracts with another, correspondence between these hospitals goes back to traditional faxing. As a provider, you’re just taking a ‘fingered crossed’ approach hoping that the fax worked, is picked up, was put in the appropriate inbox and was actually looked at. Information acquisition and making sure it’s timely are unforeseen between EMRs.

Participants reported an “astronomic” number of daily faxes and telephone calls to complete the communication EMRs were initially designed to handle. These challenges are even more burdensome if a patient moves from out of town or out of state; obtaining their medical records was repeatedly referred to as a “chore” so onerous that it often remains undone. Another recurring concern brought up by participants regarded accuracy within EMRs to lend a false sense of security. They are not frequently updated, not designed to be family-centered and not set up to do anything automatically. One participant highlighted these limitations by stating:

I was very proud of a change I made in our EMR system [EPIC], even though it was one I never should have had to make. I was getting very upset because I would find out from my nursing assistant who read the obituary that one of my patients had died. There was a real problem with the way the EMR was notifying PCP’s, so I got an EPIC-level automated notification built into our EMR so that any time a patient died, their status would be changed to deceased and a notification would be sent to their PCP. It’s just really awful to find out a week later that your patient died, especially when you know these people and their families really well. It’s not good care to have blind follow up.

Whether it be a physical or electronic miscommunication between healthcare providers, the appropriate delivery of healthcare can be called to question

Theme 4: Time and resource constraints disproportionately harm rural health systems

Several measures of system capacity suggest the healthcare system in the US is under-resourced. There are fewer physicians and hospital beds per capita compared to most comparable countries, and the growth of healthcare provider populations has stagnated over time [ 15 ]. Rural areas, in particular, are subject to resource limitations [ 16 ]. All participants discussed provider shortages in detail. They described how shortages impact time allocation in their day-to-day operations. Tasks like patient intakes, critical assessments, and recovering information from EMRs take time, of which most participants claimed to not have enough of. There was also a consensus in having inadequate time to spend on medically complex cases. Time pressures were reported to subsequently influence quality of care. One participant stated:

With the constant pace of medicine, time is not on your side. A provider cannot always participate in an enriching dialogue with their patients, so rather than listen and learn, we are often coerced into the mindset of ‘getting through’ this patient so we can move on. This echoes for patient education during discharge, making the whole process more arduous than it otherwise could be if time and resources were not as sparse.

Depending on provider type, specialty, and the size of patient panels, four participants said they have the luxury of extending patient visits to 40 + minutes. Any flexibility with patient visits was regarded as just that: a luxury. Very few providers described the ability to coordinate their schedules as such. This led some study participants to limit the number of patients they serve. One participant said:

We simply don’t have enough clinicians, which is a shame because these people are really skilled, exceptional, brilliant providers but are performing way below their capacity. Because of this, I have a smaller case load so I can engage in a level of care that I feel is in the best interest of my patients. Everything is a tradeoff. Time has to be sacrificed at one point or another. This compromise sets our system up to do ‘ok’ work, not great work.

Of course, managing an overly large number of patients with high complexity is challenging. Especially while enduring the burden of a persisting global pandemic, participants reflected that the general outlook of administering healthcare in the US is to “do more with less.” This often forces providers to delegate responsibilities, which participants noted has potential downsides. One participant described how delegating patient care can cause problems.

Very often will a patient schedule a follow up that needs to happen within a certain time frame, but I am unable to see them myself. So, they are then placed with one of my mid-level providers. However, if additional health issues are introduced, which often happens, there is a high-risk of bounce-back or need to return once again to the hospital. It’s an inefficient vetting process that falls to people who may not have specific training in the labs and imaging that are often included in follow up visits. Unfortunately, it’s a forlorn hope to have a primary care physician be able to attend all levels of a patient’s care.

Several participants described how time constraints stretch all healthcare staff thin and complicate patient care. This was particularly important among participants who reported having a patient panel exceeding 1000. There were some participants, however, who praised the relationships they have with their nurse practitioners and physician’s assistants and mark transparency as the most effective way to coordinate care. Collectively, these clinical relationships were built over long standing periods of time, a disadvantage to providers at the start of their medical career. All but one participant with over a decade of clinical experience mentioned the usefulness of these relationships. The factors discussed in Theme 4 are directly linked to the Availability dimension of access to healthcare. A patient’s ability to reach care is subject to the capacity of their healthcare provider(s). Additionally, further analysis suggests these factors also link to the Appropriateness dimension because the quality of patient-provider relationships may be negatively impacted if a provider’s time is compromised.

Theme 5: Profits are prioritized over addressing barriers to healthcare access in the US.

The US healthcare system functions partially for-profit in the public and private sectors. The federal government provides funding for national programs such as Medicare, but a majority of Americans access healthcare through private employer plans [ 85 ]. As a result, uninsurance rates influence healthcare access. Though the rate of the uninsured has dropped over the last decade through expansion of the Affordable Care Act, it remains above 8 percent [ 86 ]. Historically, there has been ethical criticism in the literature of a for-profit system as it is said to exacerbate healthcare disparities and constitute unfair competition against nonprofit institutions. Specifically, the US healthcare system treats healthcare as a commodity instead of a right, enables organizational controls that adversely affect patient-provider relationships, undermines medical education, and constitutes a medical-industrial complex that threatens influence on healthcare-related public policy [ 87 ]. Though unprompted by the interviewer, participants raised many of these concerns. One participant shared their views on how priorities stand in their practice:

A lot of the higher-ups in the healthcare system where I work see each patient visit as a number. It’s not that they don’t have the capacity to think beyond that, but that’s what their role is, making sure we’re profitable. That’s part of why our healthcare system in the US is as broken as it is. It’s accentuated focus on financially and capitalistically driven factors versus understanding all these other barriers to care.

Eight participants echoed a similar concept, that addressing barriers to healthcare access in their organizations is largely complicated because so much attention is directed on matters that have nothing to do with patients. A few other participants supported this by alluding to a “cherry-picking” process by which those at the top of the hierarchy devote their attention to the easiest tasks. One participant shared an experience where contrasting work demands between administrators and front-line clinical providers produces adverse effects:

We had a new administrator in our hospital. I had been really frustrated with the lack of cultural awareness and curiosity from our other leaders in the past, so I offered to meet and take them on a tour of the reservation. This was meant to introduce them to kids, families and Tribal leaders who live in the area and their interface with healthcare. They declined, which I thought was disappointing and eye-opening.

Analysis of these factors suggest that those who work directly with patients understand patient needs better than those who serve in management roles. This same participant went on to suggest an ulterior motive for a push towards telemedicine, as administrators primarily highlight the benefit of billing for virtual visits instead of the nature of the visits themselves.

This study explored barriers and facilitators to healthcare access from the perspective of rural healthcare providers in Montana. Our qualitative analysis uncovered five key themes: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US. Themes 2 and 3 were directly supported by earlier qualitative studies that applied Levesque’s framework, specifically regarding healthcare providers’ poor interpersonal quality and lack of collaboration with other providers that are suspected to result from a lack of provider training [ 67 , 70 ]. This ties back to the importance of cultural humility, which many previous culture-based trainings have referred to as cultural competence. Cultural competence is achieved through a plethora of trainings designed to expose providers to different cultures’ beliefs and values but induces risk of stereotyping and stigmatizing a patient’s views. Therefore, cultural humility is the preferred idea, by which providers reflect and gain open-ended appreciation for a patient’s culture [ 88 ].

Implications for Practice

Perhaps the most substantial takeaway is how embedded rugged individualism is within rural patient populations and how difficult that makes the delivery of care in rural health systems. We heard from participants that stoicism and perceptions of stigma within the system contribute to this, but other resulting factors may be influential at the provider- and organizational-levels. Stoicism and perceived stigma both appear to arise, in part, from an understandable knowledge gap regarding the care system. For instance, healthcare providers understand the relations between primary and secondary care, but many patients may perceive both concepts as elements of a single healthcare system [ 89 ]. Any issue experienced by a patient when tasked to see both a primary and secondary provider may result in a patient becoming confused [ 90 ]. This may also overlap with our third theme, as a disjointed means of communication between healthcare providers can exacerbate patients’ negative experiences. One consideration to improve this is to incorporate telehealth programs into an existing referral framework to reduce unnecessary interfacility transfers; telehealth programs have proven effective in rural and remote settings [ 91 ].

In fact, telehealth has been rolled out in a variety of virtual platforms throughout its evolution, its innovation matched with continued technological advancement. Simply put, telehealth allows health service delivery from a distance; it allows knowledge and practice of clinical care to be in a different space than a patient. Because of this, a primary benefit of telehealth is its impact on improving patient-centered outcomes among those living in rural areas. For instance, text messaging technology improves early infant diagnosis, adherence to recommended diagnostic testing, and participant engagement in lifestyle change interventions [ 92 , 93 , 94 ]. More sophisticated interventions have found their way into smartphone-based technology, some of which are accessible even without an internet connection [ 95 , 96 ]. Internet accessibility is important because a number of study participants noted internet connectivity as a barrier for patients who live in low resource communities. Videoconferencing is another function of telehealth that has delivered a variety of health services, including those which are mental health-specific [ 97 ], and mobile health clinics have been used in rural, hard-to-reach settings to show the delivery of quality healthcare is both feasible and acceptable [ 98 , 99 , 100 ]. While telehealth has potential to reduce a number of healthcare access barriers, it may not always address the most pressing healthcare needs [ 101 ]. However, telehealth does serve as a viable, cost-effective alternative for rural populations with limited physical access to specialized services [ 102 ]. With time and resource limitations acknowledged as a key theme in our study, an emphasis on expanding telehealth services is encouraged as it will likely have significant involvement on advancing healthcare in the future, especially as the COVID-19 pandemic persists [ 103 ].

Implications for Policy

One could argue that most of the areas of fragmentation in the US healthcare system can be linked to the very philosophy on which it is based: an emphasis on profits as highest priority. Americans are, therefore, forced to navigate a health service system that does not work solely in their best interests. It is not surprising to observe lower rates of healthcare usage in rural areas, which may be a result from rural persons’ negative views of the US healthcare system or a perception that the system does not exist to support wellness. These perceptions may interact with ‘rugged individualism’ to squelch rural residents’ engagement in healthcare. Many of the providers we interviewed for this study appeared to understand this and strived to improve their patients’ experiences and outcomes. Though these efforts are admirable, they may not characterize all providers who serve in rural areas of the US. From a policy standpoint, it is important to recognize these expansive efforts from providers. If incentives were offered to encourage maximum efforts be made, it may lessen burden due to physician burnout and fatigue. Of course, there is no easy fix to the persisting limit of time and resources for providers, problems that require workforce expansion. Ultimately, though, the current structure of the US healthcare system is failing rural America and doing little to help the practice of rural healthcare providers.

Implications for Future Research

It is important for future health systems research efforts to consider issues that arise from both individual- and system-level access barriers and where the two intersect. Oftentimes, challenges that appear linked to a patient or provider may actually stem from an overarching system failure. If failures are critically and properly addressed, we may refine our understanding of what we can do in our professional spaces to improve care as practitioners, workforce developers, researchers and advocates. This qualitative study was exploratory in nature. It represents a step forward in knowledge generation regarding challenges in access to healthcare for rural Americans. Although mental health did not come up by design in this study, future efforts exploring barriers to healthcare access in rural systems should focus on access to mental healthcare. In many rural areas, Montana included, rates of suicide, substance use and other mental health disorders are highly prevalent. These characteristics should be part of the overall discussion of access to healthcare in rural areas. Optimally, barriers to healthcare access should continue to be explored through qualitative and mixed study designs to honor its multi-dimensional stature.

Strengths and Limitations

It is important to note first that this study interviewed healthcare providers instead of patients, which served as both a strength and limitation. Healthcare providers were able to draw on numerous patient-provider experiences, enabling an account of the aggregate which would have been impossible for a patient population. However, accounts of healthcare providers’ perceptions of barriers to healthcare access for their patients may differ from patients’ specific views. Future research should examine acceptability- and appropriateness-related barriers to healthcare access in patient populations. Second, study participants were recruited through convenience sampling methods, so results may be biased towards healthcare providers who are more invested in addressing barriers to healthcare access. Particularly, the providers interviewed for this study represented a subset who go beyond expectations of their job descriptions by engaging with their communities and spending additional uncompensated time with their patients. It is likely that a provider who exhibits these behavioral traits is more likely to participate in research aimed at addressing barriers to healthcare access. Third, the inability to conduct face-to-face interviews for our qualitative study may have posed an additional limitation. It is possible, for example, that in-person interviews might have resulted in increased rapport with study participants. Notwithstanding this possibility, the remote interview format was necessary to accommodate health risks to the ongoing COVID-19 pandemic. Ultimately, given our qualitative approach, results from our study cannot be generalizable to all rural providers’ views or other rural health systems. In addition, no causality can be inferred regarding the influence of aspects of rurality on access. The purpose of this exploratory qualitative study was to probe research questions for future efforts. We also acknowledge the authors’ roles in the research, also known as reflexivity. The first author was the only author who administered interviews and had no prior relationships with all but one study participant. Assumptions and pre-dispositions to interview content by the first author were regularly addressed throughout data analysis to maintain study integrity. This was achieved by conducting analysis by unique interview question, rather than by unique participant, and recoding the numerical order of participants for each question. Our commitment to rigorous qualitative methods was a strength for the study for multiple reasons. Conducting member checks with participants ensured trustworthiness of findings. Continuing data collection to data saturation ensured dependability of findings, which was achieved after 10 interviews and confirmed after 2 additional interviews. We further recognize the heterogeneity in our sample of participants, which helped generate variability in responses. To remain consistent with appropriate means of presenting results in qualitative research however, we shared minimal demographic information about our study participants to ensure confidentiality.

The divide between urban and rural health stretches beyond a disproportionate allocation of resources. Rural health systems serve a more complicated and hard-to-reach patient population. They lack sufficient numbers of providers to meet population health needs. These disparities impact collaboration between patients and providers as well as the delivery of acceptable and appropriate healthcare. The marker of rurality complicates the already cumbersome challenge of administering acceptable and appropriate healthcare and impediments stemming from rurality require continued monitoring to improve patient experiences and outcomes. Our qualitative study explored rural healthcare providers’ views on some of the social, cultural, and programmatic factors that influence access to healthcare among their patient populations. We identified five key themes: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US. This study provides implications that may shift the landscape of a healthcare provider’s approach to delivering healthcare. Further exploration is required to understand the effects these characteristics have on measurable patient-centered outcomes in rural areas.

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to individual privacy could be compromised but are available from the corresponding author on reasonable request.

Ethics approval and consent to participate.

All study procedures and methods were carried out in accordance with relevant guidelines and regulations from the World Medical Association Declaration of Helsinki. Ethics approval was given by exempt review from the Institutional Review Board (IRB) at the University of Montana (IRB Protocol No.: 186–20). Participants received oral and written information about the study prior to interview, which allowed them to provide informed consent for the interviews to be recorded and used for qualitative research purposes. No ethical concerns were experienced in this study pertaining to human subjects.

Consent for publication.

The participants consented to the publication of de-identified material from the interviews.

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Acknowledgements

This research was supported by the Center for Biomedical Research Excellence award (P20GM130418) from the National Institute of General Medical Sciences of the National Institute of Health. The first author was also supported by the University of Montana Burnham Population Health Fellowship. We would like to thank Dr. Christopher Dietrich, Dr. Jennifer Robohm and Dr. Eric Arzubi for their contributions on determining inclusion criteria for the healthcare provider population used for this study.

 This research did not receive any specific grant from funding agencies in the public, commercial, and not-for-profit sectors. 

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The authors confirm contribution to the paper as follows: study conception and design: NC and JC; data collection: NC; analysis and interpretation of results: NC and JC; draft manuscript preparation: NC, DC and JC; and manuscript editing: NC, DC and JC. All authors reviewed the results and approved the final version of the manuscript.

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Coombs, N.C., Campbell, D.G. & Caringi, J. A qualitative study of rural healthcare providers’ views of social, cultural, and programmatic barriers to healthcare access. BMC Health Serv Res 22 , 438 (2022). https://doi.org/10.1186/s12913-022-07829-2

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Retirement planning – a systematic review of literature and future research directions

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Rising life expectancy and an aging population across nations are leading to an increased need for long-term financial savings and a focus on the financial well-being of retired individuals amidst changing policy framework. This study is a systematic review based on a scientific way of producing high-quality evidence based on 191 articles from the Scopus and Web of Science databases. It adopts the Theory, Context, Characteristics, and Method (TCCM) framework to analyze literature. This study provides collective insights into financial decision-making for retirement savings and identifies constructs for operationalizing and measuring financial behavior for retirement planning. Further, it indicates the need for an interdisciplinary approach. Though cognitive areas were studied extensively, the non-cognitive areas received little attention. Qualitative research design is gaining prominence in research over other methods, with the sparse application of mixed methods design. The study’s TCCM framework explicates several areas for further research. Furthermore, it guides the practice and policy by integrating empirical evidence and concomitant findings. Coherent synthesis of the extant literature reconciles the highly fragmented field of retirement planning. No research reports prospective areas for further analysis based on the TCCM framework on retirement planning, which highlights the uniqueness of the study.

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Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement

• Janneke M. Groothuijse 1 , 2 ,
• Lisa S. van Tol 1 , 2 ,
• C. C. M. (Toos) Hoeksel-van Leeuwen 1 , 2 ,
• Johannes J. M. van Delden 3 ,
• Monique A. A. Caljouw 1 , 2 &
• Wilco P. Achterberg 1 , 2  

BMC Geriatrics volume  24 , Article number:  324 ( 2024 ) Cite this article

Metrics details

Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research.

A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results.

The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted.

Conclusions

Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership of the research process.

Trial registration

Prospero 2021: CRD42021253736.

Peer Review reports

In research characterized by active involvement, the target group plays a pivotal role in shaping research decisions and outcomes, directly impacting them. Involving patients in health research offers significant benefits [ 1 , 2 ]: it enhances participant recruitment [ 2 ], refines research questions [ 2 ], aligns study results with the target population [ 1 , 2 ], and promotes effective implementation of findings [ 1 ]. Active involvement of patients has also benefits for themselves, namely an enhanced understanding of research, building relationships, personal development, improved health and wellbeing, and enjoyment and satisfaction [ 3 , 4 ]. It gives them a sense of purpose and satisfaction through their tangible impact.

However, for long-term care (LTC) users and persons living with dementia (PLWD) active involvement in research is less developed than for other patient groups [ 5 , 6 ]. PLWD and LTC users share similar care needs, encompassing assistance with activities of daily living (ADLs), medication management, medical condition monitoring, and emotional support. Furthermore, a substantial portion of LTC users comprises individuals living with dementia [ 7 ]. Additionally, statistical data from the United States reveals that one in four older individuals is likely to reside in long-term care (LTC) facilities [ 8 ], and approximately forty to eighty percent of LTC residents in the United States, Japan, Australia, and England experience dementia or severe memory problems [ 7 , 9 ].

Due to these considerations, we have chosen to combine the target audiences of PLWD and LTC users in our systematic review. However, it's important to note that while there are potential advantages to combining these target groups, there may also be challenges. PLWD and LTC users may have varying needs, preferences, and experiences, including differences in care requirements driven by individual factors like the stage of dementia, coexisting conditions, and personal preferences. Therefore, it's imperative to conduct comprehensive research and involve these communities to ensure that involvement approaches are not only inclusive but also tailored to meet their specific requirements.

Given our ageing population and the intricate health challenges faced by PLWD and LTC users, including their vulnerability and shorter life expectancy in old age, it's crucial to establish effective research involvement methods. These individuals have unique needs and preferences that require attention. They possess a voice, and as researchers, it is our responsibility to not only listen to them but also actively involve them in the research process. Consequently, it is essential to identify means through which the voices of PLWD and LTC users can be effectively heard and ensure that their input is incorporated into research.

Fortunately, publication of studies on involvement of PLWD and LTC users in scientific research is slowly increasing [ 5 , 9 , 10 , 11 ]. A few reviews have described how PLWD and LTC users were involved [ 5 , 9 , 10 ]. However, with the increasing attention for involvement, the understanding of when involvement is meaningful grows and stricter requirements can be imposed to increase the quality of active involvement [ 12 , 13 ]. To our knowledge there is no up to date overview of involvement methods used with either or both PLWD and LTC users. Such an overview of involvement methods for PWLD and LTC users would provide a valuable, comprehensive resource encompassing various stages of the research cycle and different aspects of involvement. It would equip researchers with the necessary guidance to navigate the complexities of involving PLWD and LTC users in their research projects.

Recognizing the need to enhance the involvement of PLWD and LTC users in scientific research, this systematic review aims to construct a comprehensive overview of the multiple methodologies employed in previous studies, along with an examination of the facilitators and barriers of involvement. Our overarching goal is to promote inclusive and effective involvement practices within the research community. To achieve this objective, this review will address the following questions: (1) What kind of methods are used and how are these methods implemented to facilitate involvement of PLWD and LTC users in scientific research? (2) What are the facilitators and barriers encountered in previous research projects involving PLWD and LTC users?

Protocol and registration

The search and analysis methods were specified in advance in a protocol. The protocol is registered and published in the PROSPERO database with registration number CRD42021253736. The search and analysis methods are also described below more briefly.

Information sources, search strategy, and eligibility criteria

In preparation of the systematic literature search, key articles and reviews about involvement of PLWD and LTC users in research were screened to identify search terms. In addition, Thesaurus and MeSH terms were used to broaden the search. The search was conducted on December 10, 2020, across multiple databases: PubMed, Medline, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, Academic Search Premier, JSTOR, Social Services Abstracts, Sociological Abstracts, Psychology and Behavioral Sciences Collection. The search terms were entered in "phrases". The search strategy included synonymous and related terms for dementia, LTC user, involvement, research, method, and long-term care. The full search strategy is provided in supplement 1 .

After conducting the search, records underwent initial screening based on titles and abstracts. Selected reports were retrieved for full-text assessment, and studies were evaluated for eligibility based on several criteria. However, no restriction was made regarding publication date. First, to be included studies had to be written in English, German, French, or Dutch. Second, we only included original research studies. Third, studies were excluded when the target group or their representatives were not involved in research, but only participated as research subjects. Fourth, studies were excluded when not describing involvement in research. Therefore, studies concerning involvement in care, policy, or self-help groups were excluded. Fifth, the focus of this systematic review is on methods. Therefore, studies with a main focus on the results, evaluation, ethical issues, and impact of involvement in research were excluded. Additionally, we have not set specific inclusion or exclusion criteria based on study design since our primary focus is on involvement methodologies, regardless of the chosen research design. Sixth, the included studies had to concern the involvement in research of PLWD or adult LTC users, whether living in the community or in institutional settings, as well as informal caregivers or other representatives of these groups who may represent PLWD and LTC users facing limitations. Studies that involved LTC users that were children or ‘young adults’, or their representatives, were excluded. Studies were also excluded if they involved mental healthcare users if it remained unclear if the care that they received entailed more than only treatment from mental healthcare providers, but for example also assistance with ADL.

Terminology

For readability purposes, we use the abbreviation PLWD to refer to persons diagnosed with dementia, and we use the abbreviation LTC users to refer to persons receiving long-term care, at home or as residents living in nursing homes or other residential facilities. We use the term carers to refer to informal caregivers and other representatives of either PLWD or LTC users. As clear and consistent definitions regarding participatory research remains elusive [ 14 , 15 ], we formulated a broad working definition of involvement in research so as not to exclude any approach to participatory research. We defined involvement in research as “research carried out ‘with’ or ‘by’ the target group” [ 16 ], where the target group or their representatives take part in the governance or conduct of research and have some degree of ownership of the research [ 12 ]. It concerns involvement in research in which lived experienced experts work alongside research teams. We use the terms participation and participants, to refer to people being part of the research as study subjects.

Selection process, data-collection process, and data items

Titles and abstracts were independently screened by the first and second author (JG and LT). Only the studies that both reviewers agreed and met the inclusion criteria were included in the full-text screening process. Any uncertainty about whether the studies truly described a model or approach for involvement, was resolved by a quick screening of the full-text paper. The full-text screening process was then conducted according to the same procedure by JG and LT. Any disagreement was resolved by discussion until consensus was reached. If no agreement could be reached, a third researcher (MC) was consulted. References of the included studies were screened for any missing papers.

The following information was collected on a data collection sheet in Microsoft Excel: year and country of publication, topic, research aim, study design, living situation of involved persons (at home or institutionalized), description of involved persons, study participants (study subjects), theories and methods used, type/role(s) of involvement, research phase(s), recruitment, consent approach, study setting, structure of participatory activities, training, resources, facilitators, barriers, ethics, benefits, impact, and definition of involvement used.

JG independently extracted data from all included studies, the involved co-researcher (THL) independently extracted data from two studies, the second author (LT) from five. Differences in the analysis were discussed with the co-researcher (THL) and second author (LT) until consensus was reached. As only minor differences emerged, limited to the facilitator and barrier categories, data from the remaining studies was extracted by JG.

Risk of bias assessment

Every research article identified through the systematic review exclusively comprised qualitative descriptions of the involvement method(s) employed. Consequently, all articles underwent evaluation using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018 [ 17 ], as opposed to the checklists intended for quantitative or mixed methods research. All included studies were independently assessed on quality by two reviewers (JG,LT) and any disagreement was resolved by discussion until consensus was reached. The CASP Qualitative Checklist consists of ten questions. The checklist does not provide suggestions on scoring, the first author designed a scoring system: zero points if no description was provided (‘no’), one point if a minimal description was provided (‘can’t tell’) and two points when the question was answered sufficiently (‘yes’). The second question of the checklist, “is a qualitative methodology appropriate”, was not applicable to the aims (i.e., to describe involvement) of the included studies and was therefore excluded. The tenth question was translated into a ‘yes’, ‘can’t tell’, or ‘no’ score to fit the scoring system. A maximum of eighteen points could be assigned.

Synthesis methods

Tables were used to summarize the findings and to acquire an overview of (1) the kinds of methods used to enable involvement of PLWD, LTC users, or carers in scientific research, and (2) the facilitators and barriers for involving this target group in scientific research. As to the first research aim, the headings of the first two tables are based on the Guidance for Reporting Involvement of Patients and the Public, long form version 2 (GRIPP2-LF) [ 18 ]. Because our systematic review focusses on methods, only the topics belonging to sections two, three, and four were included. Following Shippee et al., three main research phases were distinguished: preparation, execution, and translation [ 19 ]. Furthermore, the following fields were added to the GRIPP2-LF: First author, year of publication, country of study, setting of involvement, frequency of meetings, and a summary description of activities.

Concerning the second research aim, the extracted facilitators, barriers, and good practices were imported per study in ATLAS.ti for qualitative data analysis. Following the method for thematic synthesis of qualitative studies in systematic reviews [ 20 ], all imported barriers, facilitators and good practices were inductively coded staying 'close' to the results of the original studies, which resulted in 50 initial codes. After multiple rounds of pile sorting [ 21 ], based on similarities and differences and discussions in the research team, this long code list was grouped into a total of 27 categories, which were thereafter subsequently organized into 14 descriptive themes within the three research phases (preparation, execution, translation).

Study selection and characteristics

The Prisma Flow Diagram was used to summarize the study selection process [ 22 ]. In the full text screening, 72 of the 93 remaining studies were excluded because they were not original research articles (n = 5), not about involvement (n = 8), not about involvement in a research project (n = 1), they did not describe a model or method for involvement (n = 34), or they were not about PLWD or LTC users (n = 24). The search resulted in 18 publications eligible for analysis (Fig.  1 ).

Preferred Reporting items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram

Table 1 presents the general study characteristics. Two studies explicitly aimed to develop a model for involvement or good practice, and both focus on co-research either with PLWD [ 23 ] or their carers [ 13 ]. The other sixteen provide a description of the involvement of PLWD [ 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 ] or LTC users in their research projects [ 35 , 36 , 37 , 38 , 39 ].

Quality assessment

Table 1 presents the CASP-score per study [ 17 ]. Five scored 16 to 18 points [ 13 , 28 , 29 , 32 , 35 ], indicating high quality with robust methods, clear aims, and strong data analysis. Eleven scored 12 to 15 [ 23 , 24 , 26 , 30 , 32 , 33 , 34 , 36 , 37 , 38 , 39 ], showing generally strong methodologies but with some limitations. Two scored 9 or lower [ 25 , 27 ], signifying significant methodological and analytical shortcomings. Notably, these low-scoring studies were short articles lacking clear recommendations for involvement in research.

Design and implementation of involvement

Phases and methods of involvement.

Table 2 describes the involvement methods used for and the implementation of involvement in research. The included studies jointly presented methods for involvement in the three main research phases [ 19 ]. Regarding the preparation phase, which involves the preparatory work for the study, only three studies provided detailed descriptions of the methods employed [ 26 , 30 , 32 ]. The execution phase, encompassing the actual conduct of the research, was most frequently discussed [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. Five studies addressed the translation phase [ 13 , 25 , 31 , 36 , 37 ], where the focus shifts to translating research findings into actionable outcomes.

The eighteen studies introduced a variety of involvement methods, categorizable into five groups: 1) advisory groups, 2) research team meetings (both formal and informal), 3) action groups, 4) workshops, and 5) co-research in interviews. In five studies, individuals including PLWD, LTCF residents, carers, and health professionals participated in advisory/reference groups [ 25 , 26 , 27 , 32 ], working groups [ 27 ], and panels [ 28 ]. These groups offered valuable feedback on research aspects, spanning protocols, design, questionnaires, and implementation of research. Meetings occurred at varying frequencies - monthly, quarterly, or biannually.

Two studies exemplify diverse research collaboration settings. One involving older individuals within an academic research team of five [ 37 ], and another featuring a doctoral student and a co-researcher conducting informal monthly discussions at a local coffee shop [ 31 ]. Brown et al. sought to minimize power differentials and enhance inclusivity [ 37 ], while Mann and Hung focused on benefiting people with dementia and challenging negative discourse on dementia [ 31 ].

An additional five studies employed methods involving frequent meetings, including action [ 35 , 39 ], inquiry [ 23 ], and discussion groups [ 29 , 36 ] In these groups, involved persons with lived experience contributed to developing a shared vision and community improvements, such as enhancing the mealtime experience in care facilities [ 35 ].

Seven studies involved individuals through workshops, often conducted over one or two sessions. These workshops contributed to generating recommendations [ 37 ], informing future e-health designs [ 29 , 30 ], and ensuring diverse perspectives and lived experiences were included in data analysis [ 13 , 24 , 32 , 33 ]. In three studies, representatives worked as co-researchers in interviews, drawing on personal experiences to enhance the interview process, making it more dementia-appropriate and enriching data collection [ 13 , 32 , 34 ]. Finally, one study involved representatives in the recruitment and conduct of interviews [ 38 ].

People involved

The number of persons involved varied from a single co-researcher [ 31 ] to 34 panel individuals providing feedback on their experiences in a clinical trial [ 28 ]. Thirteen studies focussed on PLWD: eleven involved PLWD themselves [ 23 , 24 , 25 , 26 , 27 , 29 , 30 , 31 , 32 , 33 , 34 ], one exclusively focused on caregivers [ 13 ], and another one involved people without or with mild cognitive impairment, who participated in a study examining the risks of developing Alzheimer's disease [ 28 ]. Although not all articles provided descriptions of the dementia stage, available information indicated that individuals involved typically fell within the early to mid-stages of dementia [ 29 , 30 , 32 , 33 , 34 ]. Next to PLWD and carers, two studies additionally involved organizational or advocacy representatives [ 25 , 27 ]. The other five studies concerned older adults living in a LTC facility. Two of them involved older residents themselves [ 35 , 39 ], the other three carers, older community/client representatives or health care practitioners [ 36 , 37 , 38 ].

Roles and level of involvement

Four general roles could be identified. First, consultation and advisory roles were held by PLWD and carers [ 25 , 26 , 27 , 28 , 29 , 30 , 32 ], where involved persons share knowledge and experiences to make suggestions [ 32 ], but the research team retained formal decision-making power [ 25 ]. Second, PLWD were involved as co-analysts in data analysis [ 24 , 32 , 33 ]. Co-analysts influence data analysis, but the decision-making power remained with academic researchers [ 24 ]. Third, in six studies the co-researcher role was part of the research design in which involved persons and researchers steer and conduct research together [ 13 , 23 , 31 , 32 , 34 , 36 ]. Finally, two studies partnered with LTC residents [ 35 , 39 ], with residents at the core of the group, and positioned as experts by experience [ 39 ]. Residents had the decision-making authority regarding how to improve life in LTC facilities [ 35 ].

Models for involvement in research

Only two studies designed a model for co-research with PLWD [ 23 ] or their carers [ 13 ] across all research phases. These models underscored the importance of iterative training for co-researchers [ 13 , 23 ] and academic researchers [ 23 ]. Furthermore, these studies advocate involving co-researchers early on in the research process [ 13 ] and in steering committees [ 23 ]. Co-researchers can be involved in designing research materials [ 23 ], conducting interviews [ 13 , 23 ], analysing data [ 13 ], and co-disseminating findings [ 13 , 23 ]. Additionally, one study stressed involving PLWD in identifying (future) research priorities [ 23 ].

Barriers, facilitators, and good practices in research phases

Preparation phase.

Table 3 describes the barriers, facilitators, and good practices per main research phase. Lack of diversity in ethnicity and stages of dementia in the recruitment of involved persons is mentioned as a recurring barrier [ 26 , 28 , 32 , 33 ]. The exclusion of people with cognitive impairments is partly due to gatekeepers’ and recruiters’ bias towards cognitively healthy people [ 28 , 32 ]. It is stressed that researchers should refrain from making assumptions about the abilities of PLWD and ask the person what he/she is willing to do [ 31 ]. It is considered good practice to involve people regardless of cognitive abilities [ 23 ], based on skills, various personal characteristics [ 13 ] and, if possible, relevant prior experience [ 38 ].

Many studies stress the importance of building a mutual trusting relationship between involved persons and academic researchers [ 13 , 23 , 31 , 33 , 34 , 37 ]. A good relationship is believed to break down social barriers [ 37 ], foster freedom of expression [ 33 ], and thereby avoiding tokenistic involvement [ 13 ]. In addition, spending time with these persons is important to become familiar with an individual’s strengths and limitations [ 31 ].

Opting for naturally evolving involvement roles was mentioned as a barrier, as this may result in conflicting expectations and irrelevant tasks [ 37 ]. A clear role description and clarification of tasks is key to balancing potentially different expectations of the involved persons and researchers [ 26 , 28 , 29 , 32 , 38 ]. When designing a role for involvement in research, good practices dictate taking into account personal skills, preferences, development goals, and motivation for involvement [ 13 , 32 ]. This role should ideally be designed in collaboration with involved persons [ 13 , 32 ].

The perception of providing training to involved persons is ambivalent. Studies cited that training should not aim to transform them into “pseudo-scientist” [ 32 , 37 ] and that it raises the costs for involvement [ 28 ]. However, multiple scholars emphasize the importance of providing iterative training to facilitate meaningful involvement and development opportunities [ 13 , 23 , 28 , 31 , 32 , 33 , 36 , 37 ]. Training can empower involved persons to engage in the research process equally and with confidence, with the skills to fulfil their role [ 13 , 33 , 38 ]. However, the implementation of training may present a potential conflict with the fundamental principle of valuing experiential knowledge [ 37 ] and should avoid the objective of transforming co-researchers into 'expert' researchers [ 32 ]. Academic researchers should also be offered training on how to facilitate meaningful involvement [ 13 , 23 , 28 , 31 ].

Limited time and resources were mentioned as barriers to involvement that can delay the research process [ 13 , 33 , 36 , 39 ], restrict the involvement [ 28 ] and hinder the implementation of developed ideas [ 39 ]. Financial compensation for involvement is encouraged [ 25 , 26 , 27 , 32 ], as it acknowledges the contribution of involved persons [ 13 ]. Thus, meaningful involvement in research requires adequate funding and infrastructure to support the involvement activities [ 13 , 28 , 33 , 37 ].

Execution phase

The use of academic jargon and rapid paced discussions [ 13 , 37 ], power differentials, and the dominant discourse in biomedical research on what is considered “good science” can limit the impact of involvement [ 13 , 24 , 32 , 36 , 37 ]. Facilitating researchers should reflect on power differentials [ 35 ] and how decision-making power is shared [ 31 ]. Other facilitating factors are making a glossary of terms used and planning separate meetings for “technical topics” [ 37 ]. In addition, an emergent research design [ 35 ] or a design with flexible elements [ 28 ] can increase ownership in the research project and provide space for involvement to inform the research agenda [ 28 , 35 ]. This requires academic researchers to value experiential knowledge and to have an open mind towards the evolving research process [ 13 , 23 , 31 ].

Furthermore, managing the involvement process and ensuring equity in the collaboration [ 13 , 32 , 33 ], facilitating researchers must encourage involved persons to voice their perspectives. This means that they sometimes need to be convinced that they are experts of lived experience [ 32 , 33 , 36 , 37 , 39 ]. To enable involvement of PLWD, the use of visual and creative tools to prompt memories can be considered [ 24 , 30 , 33 , 34 ], as well as flexibility in relation to time frames and planning regular breaks to avoid too fast a pace for people who may tire easily [ 24 , 25 , 29 , 30 ].

Involvement can be experienced as stressful [ 13 , 32 , 38 ] and caring responsibilities may interfere [ 26 ]. Tailored [ 29 ] physical and emotional support should therefore be offered [ 13 , 23 , 38 ] without making assumptions about the meaning of burden [ 30 , 31 ]. Moreover, being the only PLWD involved in an advisory group was experienced as intimidating [ 25 ] and, ideally, a larger team of PLWD is involved to mitigate responsibilities [ 37 ]. PLWD having a focal point of contact [ 28 , 37 ] and involving nurses or other staff with experience working with PLWD and their carers [ 29 , 30 ] are mentioned as being beneficial. Some stress the importance of involving carers when engaging with PLWD in research [ 25 , 29 , 30 ].

To avoid an overload of information that is shared with the involved persons, tailoring information-sharing formats to individual preferences and abilities is essential to make communication effective [ 27 , 37 ].

Translation

Two studies indicated a need for more robust evaluation measures to assess the effect of involvement [ 28 , 33 ]. Reflection and evaluation of the involvement serves to improve the collaboration and to foster introspective learning [ 13 , 23 , 26 , 31 ]. The included studies evaluated involvement through the use of reflective diaries [ 13 ] or a template [ 38 ] with open-ended questions [ 33 ].

Two studies postulate that findings should benefit and be accessible to PLWD [ 23 , 31 ]. The use of creative tools not only enables involvement of PLWD, but can also increase accessibility of research findings and expand the present representation of PLWD [ 23 ].

The 18 included studies presented multiple methods for involvement in all three research phases. We found five types of involvement: advisory groups, (formal and informal) research team meetings, action groups, workshops, and co-conducting interviews. Only two studies described methods for involvement of LTC users in research. Involved persons were most often involved in consulting and advisory roles, but also as co-analysts, co-researchers, and partners. Involved persons’ roles can evolve and change over time. Especially as involved persons grow into their role, and gain confidence and knowledge of the specific research project, a more active role with shared responsibilities can become part of the research project. In addition, multiple involvement roles can be used throughout the research depending on the research phase.

Compared to the five types of involvement that we identified, other literature reviews about involvement methods for LTC users and PLWD in research also described advisory groups [ 10 ] and workshops [ 5 , 11 ], and methods that were similar to research team meetings (drop-in sessions and meetings [ 11 ]). Methods for action research (action groups) and co-conducting research (interviews) were not included by these other review studies. In addition to our findings, these other reviews also described as involvement methods interviews and focus groups [ 5 , 10 ] surveys [ 10 ], reader consultation [ 11 ]. Those types of methods were excluded from our study, because our definition of involvement is more strict; collecting opinions is not involvement per se, but sometimes only study participation. Moreover, compared to these previous reviews we set a high standard for transparency about the participation methods and the level of detail at which they are described.

Engaging the target group in research, particularly when collaborating with PLWD, LTC users, and carers, involves navigating unforeseen challenges [ 40 ]. This requires academic researchers to carefully balance academic research goals and expectations, and the expectations, personal circumstances and development goals related to the involved person. The aim is to maximize involvement while being attentive to the individual’s needs and avoiding a deficit perspective. Effective communication should be established, promoting respect, equality, and regular feedback between all stakeholders, including individuals living with dementia and LTCF staff. Building a mutual trusting relationship between involved persons and academic researchers through social interaction and clear communication is key to overcome barriers and ensure meaningful involvement. Inclusivity and empowerment, along with fostering an environment where diverse voices are heard, are crucial for the success of involvement in research. Our results are in line with a recent study concerning the experiences of frail older persons with involvement in research, confirming the importance of avoiding stereotypic views of ageing and frailty, building a trusting relationship, and being sensitive to older persons’ preferences and needs [ 41 ].

Furthermore, our results show that training academic researchers and involved persons is essential to develop the skills to facilitate involvement and to fulfil their role with confidence, respectively. Whilst the need for training is acknowledged by others [ 41 , 42 ], there are legitimate objections to the idea of training involved persons, as the professionalization underpinning the concept of training is at odds with voicing a lay perspective [ 43 , 44 ]. Furthermore, it is argued that experiential knowledge is compromised when training is structured according to the dominant professional epistemology of objectivity [ 45 ]. Therefore, training of involved persons should not focus on what researchers think they ought to know, but on what they want to learn [ 41 ].

Academic culture was frequently mentioned as a barrier to meaningful involvement. This result resonates with the wider debate related to involvement in health research which is concerned about active or “authentic involvement” being replaced with the appropriation of the patient voice as an add-on to conventional research designs [ 12 , 46 ]. It is argued that such tokenistic involvement limits the involved persons’ ability to shape research outcomes [ 46 ]. To reduce tokenism requires a culture shift [ 13 ]. We believe that due to the strict definition of involvement and high transparency standard used in this review, tokenistic approaches were excluded. This may set an example for how to stimulate making this culture shift.

Furthermore, the importance of practical aspects such as funding and, by extension, the availability of time should not be underestimated. Adequate funding is necessary for compensation of involvement, but also to ensure that researchers have ample time to plan involvement activities and provide personalized support for PLWD, LTC residents and their carers. Funding bodies increasingly require involvement of the public to be part of research proposals. Yet, support in terms of financial compensation and time for the implementation of involvement in research is rarely part of funding grants [ 42 ]. In addition, whereas an emergent design could aid the impact of involvement, funders often require a pre-set research proposal in which individual components are already fixed [ 5 , 47 ]. This indicates that not only do academic researchers and culture need to change, academic systems also need to be modified in order to facilitate and nurture meaningful involvement [ 47 ].

Strengths and limitations

A key strength of this review is the inclusion of over ten scientific databases, with a reach beyond the conventional biomedical science databases often consulted in systematic reviews. Besides, we believe that we have overcome the inconsistent use of terminology of involvement in research by including also other terms used, such as participation and engagement, in our search strategy. However, there was also inconsistency in length of publications and precision of the explanation of the process of involvement. E.g., involvement in the execution phase was often elaborated on, contributions to the research proposal and co-authoring research findings were only stated and not described. This presented challenges for data extraction and analysis, as it was not always possible to identify how the target group was involved. Involvement in these research phases is therefore not fully represented in this review.

The included studies in this review, the majority of which are of high quality, provide methods for involvement of PLWD and LTC users in research and they do not explicitly attend to the effectiveness or impact of the method for involvement used. Therefore, a limitation of this review is that it cannot make any statements regarding the effectiveness of the involvement methods included. Moreover, our target population was broad, although PLWD and LTC users are largely overlapping in their care needs and share important features, this may have led to heterogeneous results. In future research, it would be interesting to interpret potential differences between involvement of PLWD, LTC users, and their carers. However, as we expected, the amount of literature included in our analyses was too limited to do so. Furthermore, whereas the broad target group is a limitation it is also a strength of our review. Limiting our search to specifically persons living in LTC facilities would have provided limited methods for involvement of persons living with dementia. Our broad target groups enabled us to learn from research projects in which people living with early staged dementia are directly involved from which we can draw lessons on the involvement of people with more advanced stages of dementia and persons living with cognitive problems who live within LTC facilities.

Since January 2021 quite some research has been published about the importance of involvement in research. Although we had quickly screened for new methods, we realise that we may have missed some involvement methods in the past years. There will be a need for a search update in the future.

Implications for future research

Our review shows that a flexible and emergent design may help to increase involved persons' influence on and ownership in the research process. However, not all research objectives may be suitable for the implementation of an emergent design. Future research should therefore examine how aspects of a flexible emergent design can be integrated in, e.g., clinical research without compromising the validity of research outcomes.

Alzheimer Europe has called for the direct involvement of persons living with dementia in research [ 48 ]. In addition, Swarbrick et al. (this review) advise to involve persons regardless of their cognitive abilities [ 23 ]. These statements question the involvement of proxies, such as carers, professional caregivers and others involved in the care of PLWD. While PLWD and persons with other cognitive problems constitute a significant group within residential and nursing homes [ 7 ], none of the studies included in this review have provided methods to directly involve persons with more advanced stages of dementia. This raises the question if research methods should be adapted to allow those with more advanced stages of dementia to be involved themselves or if, concerning the progressive nature of the disease, it is more appropriate to involve proxies. And secondly who should these proxies be? Those that care for and live with persons with an advanced stage of dementia, or for example a person living with an early stage of dementia to represent the voices of persons with more advanced stages of dementia [ 31 ]?

Future research should adopt our example for stricter requirements for involvement and transparency about the involvement methods used. This will reduce tokenistic involvement and further promote the culture shift towards meaningful involvement. In addition, future research should assess the impact of the involvement methods that are described in this review. One of the first instruments that that may be used to do so in varying healthcare settings is the Public and Patient Engagement Evaluation Tool (PPEET) [ 49 ]. Moreover, scholars in this review stress, and we agree with this, that future research is needed on the involvement of persons with more advanced stages of dementia to ensure their voices are not excluded from research [ 33 , 34 ].

This review provides an overview of the existing methods used to actively involve PLWD, LTC users, and carers in scientific research. Our findings show that their involvement is feasible throughout all research phases. We have identified five different methods for involvement, four different roles, and two models for co-research. Our results suggest that planning enough time for involving PLWD, LTC users, and carers in research, is important to ensure that researchers have time to build a trusting relationship and meet their personal needs and preferences. In addition, researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership in the research process.

Availability of data and materials

The full search strategy is provided in supplement 1 . The data extraction form can be provided by the corresponding author on reasonable request.

Abbreviations

Critical Appraisal Skills Programme

Guidance for Reporting Involvement of Patients and the Public, long form version 2

• Long-term care

Persons living with dementia

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Acknowledgements

We thank Jan W. Schoones, information specialist Directorate of Research Policy (formerly: Walaeus Library, Leiden University Medical Centre, Leiden, the Netherlands), for helping with the search.

This systematic review received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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Janneke M. Groothuijse, Lisa S. van Tol, C. C. M. (Toos) Hoeksel-van Leeuwen, Monique A. A. Caljouw & Wilco P. Achterberg

University Network for the Care Sector Zuid-Holland, Leiden University Medical Center, Leiden, The Netherlands

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Concept: HD, LT, MC, WA; design of study protocol: JG, LT, MC; data collection and extraction: JG, LT, MC, THL; data analysis and interpretation: all authors; writing, editing and final approval of the manuscript: all authors.

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Groothuijse, J.M., van Tol, L.S., Leeuwen, C.C.M.(.Hv. et al. Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement. BMC Geriatr 24 , 324 (2024). https://doi.org/10.1186/s12877-024-04877-7

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Received : 03 February 2023

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Published : 09 April 2024

DOI : https://doi.org/10.1186/s12877-024-04877-7

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