qualitative analysis definition social research

Qualitative Research : Definition

Qualitative research is the naturalistic study of social meanings and processes, using interviews, observations, and the analysis of texts and images.  In contrast to quantitative researchers, whose statistical methods enable broad generalizations about populations (for example, comparisons of the percentages of U.S. demographic groups who vote in particular ways), qualitative researchers use in-depth studies of the social world to analyze how and why groups think and act in particular ways (for instance, case studies of the experiences that shape political views).   

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13 Qualitative analysis

Qualitative analysis is the analysis of qualitative data such as text data from interview transcripts. Unlike quantitative analysis, which is statistics driven and largely independent of the researcher, qualitative analysis is heavily dependent on the researcher’s analytic and integrative skills and personal knowledge of the social context where the data is collected. The emphasis in qualitative analysis is ‘sense making’ or understanding a phenomenon, rather than predicting or explaining. A creative and investigative mindset is needed for qualitative analysis, based on an ethically enlightened and participant-in-context attitude, and a set of analytic strategies. This chapter provides a brief overview of some of these qualitative analysis strategies. Interested readers are referred to more authoritative and detailed references such as Miles and Huberman’s (1984) [1] seminal book on this topic.

Grounded theory

How can you analyse a vast set of qualitative data acquired through participant observation, in-depth interviews, focus groups, narratives of audio/video recordings, or secondary documents? One of these techniques for analysing text data is grounded theory —an inductive technique of interpreting recorded data about a social phenomenon to build theories about that phenomenon. The technique was developed by Glaser and Strauss (1967) [2] in their method of constant comparative analysis of grounded theory research, and further refined by Strauss and Corbin (1990) [3] to further illustrate specific coding techniques—a process of classifying and categorising text data segments into a set of codes (concepts), categories (constructs), and relationships. The interpretations are ‘grounded in’ (or based on) observed empirical data, hence the name. To ensure that the theory is based solely on observed evidence, the grounded theory approach requires that researchers suspend any pre-existing theoretical expectations or biases before data analysis, and let the data dictate the formulation of the theory.

Strauss and Corbin (1998) describe three coding techniques for analysing text data: open, axial, and selective. Open coding is a process aimed at identifying concepts or key ideas that are hidden within textual data, which are potentially related to the phenomenon of interest. The researcher examines the raw textual data line by line to identify discrete events, incidents, ideas, actions, perceptions, and interactions of relevance that are coded as concepts (hence called in vivo codes ). Each concept is linked to specific portions of the text (coding unit) for later validation. Some concepts may be simple, clear, and unambiguous, while others may be complex, ambiguous, and viewed differently by different participants. The coding unit may vary with the concepts being extracted. Simple concepts such as ‘organisational size’ may include just a few words of text, while complex ones such as ‘organizational mission’ may span several pages. Concepts can be named using the researcher’s own naming convention, or standardised labels taken from the research literature. Once a basic set of concepts are identified, these concepts can then be used to code the remainder of the data, while simultaneously looking for new concepts and refining old concepts. While coding, it is important to identify the recognisable characteristics of each concept, such as its size, colour, or level—e.g., high or low—so that similar concepts can be grouped together later . This coding technique is called ‘open’ because the researcher is open to and actively seeking new concepts relevant to the phenomenon of interest.

Next, similar concepts are grouped into higher order categories . While concepts may be context-specific, categories tend to be broad and generalisable, and ultimately evolve into constructs in a grounded theory. Categories are needed to reduce the amount of concepts the researcher must work with and to build a ‘big picture’ of the issues salient to understanding a social phenomenon. Categorisation can be done in phases, by combining concepts into subcategories, and then subcategories into higher order categories. Constructs from the existing literature can be used to name these categories, particularly if the goal of the research is to extend current theories. However, caution must be taken while using existing constructs, as such constructs may bring with them commonly held beliefs and biases. For each category, its characteristics (or properties) and the dimensions of each characteristic should be identified. The dimension represents a value of a characteristic along a continuum. For example, a ‘communication media’ category may have a characteristic called ‘speed’, which can be dimensionalised as fast, medium, or slow . Such categorisation helps differentiate between different kinds of communication media, and enables researchers to identify patterns in the data, such as which communication media is used for which types of tasks.

The second phase of grounded theory is axial coding , where the categories and subcategories are assembled into causal relationships or hypotheses that can tentatively explain the phenomenon of interest. Although distinct from open coding, axial coding can be performed simultaneously with open coding. The relationships between categories may be clearly evident in the data, or may be more subtle and implicit. In the latter instance, researchers may use a coding scheme (often called a ‘coding paradigm’, but different from the paradigms discussed in Chapter 3) to understand which categories represent conditions (the circumstances in which the phenomenon is embedded), actions/interactions (the responses of individuals to events under these conditions), and consequences (the outcomes of actions/interactions). As conditions, actions/interactions, and consequences are identified, theoretical propositions start to emerge, and researchers can start explaining why a phenomenon occurs, under what conditions, and with what consequences.

The third and final phase of grounded theory is selective coding , which involves identifying a central category or a core variable, and systematically and logically relating this central category to other categories. The central category can evolve from existing categories or can be a higher order category that subsumes previously coded categories. New data is selectively sampled to validate the central category, and its relationships to other categories—i.e., the tentative theory. Selective coding limits the range of analysis, and makes it move fast. At the same time, the coder must watch out for other categories that may emerge from the new data that could be related to the phenomenon of interest (open coding), which may lead to further refinement of the initial theory. Hence, open, axial, and selective coding may proceed simultaneously. Coding of new data and theory refinement continues until theoretical saturation is reached—i.e., when additional data does not yield any marginal change in the core categories or the relationships.

The ‘constant comparison’ process implies continuous rearrangement, aggregation, and refinement of categories, relationships, and interpretations based on increasing depth of understanding, and an iterative interplay of four stages of activities: comparing incidents/texts assigned to each category to validate the category), integrating categories and their properties, delimiting the theory by focusing on the core concepts and ignoring less relevant concepts, and writing theory using techniques like memoing, storylining, and diagramming. Having a central category does not necessarily mean that all other categories can be integrated nicely around it. In order to identify key categories that are conditions, action/interactions, and consequences of the core category, Strauss and Corbin (1990) recommend several integration techniques, such as storylining, memoing, or concept mapping, which are discussed here. In storylining , categories and relationships are used to explicate and/or refine a story of the observed phenomenon. Memos are theorised write-ups of ideas about substantive concepts and their theoretically coded relationships as they evolve during ground theory analysis, and are important tools to keep track of and refine ideas that develop during the analysis. Memoing is the process of using these memos to discover patterns and relationships between categories using two-by-two tables, diagrams, or figures, or other illustrative displays. Concept mapping is a graphical representation of concepts and relationships between those concepts—e.g., using boxes and arrows. The major concepts are typically laid out on one or more sheets of paper, blackboards, or using graphical software programs, linked to each other using arrows, and readjusted to best fit the observed data.

After a grounded theory is generated, it must be refined for internal consistency and logic. Researchers must ensure that the central construct has the stated characteristics and dimensions, and if not, the data analysis may be repeated. Researcher must then ensure that the characteristics and dimensions of all categories show variation. For example, if behaviour frequency is one such category, then the data must provide evidence of both frequent performers and infrequent performers of the focal behaviour. Finally, the theory must be validated by comparing it with raw data. If the theory contradicts with observed evidence, the coding process may need to be repeated to reconcile such contradictions or unexplained variations.

Content analysis

Content analysis is the systematic analysis of the content of a text—e.g., who says what, to whom, why, and to what extent and with what effect—in a quantitative or qualitative manner. Content analysis is typically conducted as follows. First, when there are many texts to analyse—e.g., newspaper stories, financial reports, blog postings, online reviews, etc.—the researcher begins by sampling a selected set of texts from the population of texts for analysis. This process is not random, but instead, texts that have more pertinent content should be chosen selectively. Second, the researcher identifies and applies rules to divide each text into segments or ‘chunks’ that can be treated as separate units of analysis. This process is called unitising . For example, assumptions, effects, enablers, and barriers in texts may constitute such units. Third, the researcher constructs and applies one or more concepts to each unitised text segment in a process called coding . For coding purposes, a coding scheme is used based on the themes the researcher is searching for or uncovers as they classify the text. Finally, the coded data is analysed, often both quantitatively and qualitatively, to determine which themes occur most frequently, in what contexts, and how they are related to each other.

A simple type of content analysis is sentiment analysis —a technique used to capture people’s opinion or attitude toward an object, person, or phenomenon. Reading online messages about a political candidate posted on an online forum and classifying each message as positive, negative, or neutral is an example of such an analysis. In this case, each message represents one unit of analysis. This analysis will help identify whether the sample as a whole is positively or negatively disposed, or neutral towards that candidate. Examining the content of online reviews in a similar manner is another example. Though this analysis can be done manually, for very large datasets—e.g., millions of text records—natural language processing and text analytics based software programs are available to automate the coding process, and maintain a record of how people’s sentiments fluctuate with time.

A frequent criticism of content analysis is that it lacks a set of systematic procedures that would allow the analysis to be replicated by other researchers. Schilling (2006) [4] addressed this criticism by organising different content analytic procedures into a spiral model. This model consists of five levels or phases in interpreting text: convert recorded tapes into raw text data or transcripts for content analysis, convert raw data into condensed protocols, convert condensed protocols into a preliminary category system, use the preliminary category system to generate coded protocols, and analyse coded protocols to generate interpretations about the phenomenon of interest.

Content analysis has several limitations. First, the coding process is restricted to the information available in text form. For instance, if a researcher is interested in studying people’s views on capital punishment, but no such archive of text documents is available, then the analysis cannot be done. Second, sampling must be done carefully to avoid sampling bias. For instance, if your population is the published research literature on a given topic, then you have systematically omitted unpublished research or the most recent work that is yet to be published.

Hermeneutic analysis

Hermeneutic analysis is a special type of content analysis where the researcher tries to ‘interpret’ the subjective meaning of a given text within its sociohistoric context. Unlike grounded theory or content analysis—which ignores the context and meaning of text documents during the coding process—hermeneutic analysis is a truly interpretive technique for analysing qualitative data. This method assumes that written texts narrate an author’s experience within a sociohistoric context, and should be interpreted as such within that context. Therefore, the researcher continually iterates between singular interpretation of the text (the part) and a holistic understanding of the context (the whole) to develop a fuller understanding of the phenomenon in its situated context, which German philosopher Martin Heidegger called the hermeneutic circle . The word hermeneutic (singular) refers to one particular method or strand of interpretation.

More generally, hermeneutics is the study of interpretation and the theory and practice of interpretation. Derived from religious studies and linguistics, traditional hermeneutics—such as biblical hermeneutics —refers to the interpretation of written texts, especially in the areas of literature, religion and law—such as the Bible. In the twentieth century, Heidegger suggested that a more direct, non-mediated, and authentic way of understanding social reality is to experience it, rather than simply observe it, and proposed philosophical hermeneutics , where the focus shifted from interpretation to existential understanding. Heidegger argued that texts are the means by which readers can not only read about an author’s experience, but also relive the author’s experiences. Contemporary or modern hermeneutics, developed by Heidegger’s students such as Hans-Georg Gadamer, further examined the limits of written texts for communicating social experiences, and went on to propose a framework of the interpretive process, encompassing all forms of communication, including written, verbal, and non-verbal, and exploring issues that restrict the communicative ability of written texts, such as presuppositions, language structures (e.g., grammar, syntax, etc.), and semiotics—the study of written signs such as symbolism, metaphor, analogy, and sarcasm. The term hermeneutics is sometimes used interchangeably and inaccurately with exegesis , which refers to the interpretation or critical explanation of written text only, and especially religious texts.

Finally, standard software programs, such as ATLAS.ti.5, NVivo, and QDA Miner, can be used to automate coding processes in qualitative research methods. These programs can quickly and efficiently organise, search, sort, and process large volumes of text data using user-defined rules. To guide such automated analysis, a coding schema should be created, specifying the keywords or codes to search for in the text, based on an initial manual examination of sample text data. The schema can be arranged in a hierarchical manner to organise codes into higher-order codes or constructs. The coding schema should be validated using a different sample of texts for accuracy and adequacy. However, if the coding schema is biased or incorrect, the resulting analysis of the entire population of texts may be flawed and non-interpretable. However, software programs cannot decipher the meaning behind certain words or phrases or the context within which these words or phrases are used—such sarcasm or metaphors—which may lead to significant misinterpretation in large scale qualitative analysis.

• Miles, M. B., & Huberman, A. M. (1984). Qualitative data analysis: A sourcebook of new methods . Newbury Park, CA: Sage Publications. ↵
• Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research . New York: Aldine Pub Co. ↵
• Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques , Beverly Hills: Sage Publications. ↵
• Schiling, J. (2006). On the pragmatics of qualitative assessment: Designing the process for content analysis. European Journal of Psychological Assessment , 22(1), 28–37. ↵

Social Science Research: Principles, Methods and Practices (Revised edition) Copyright © 2019 by Anol Bhattacherjee is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , except where otherwise noted.

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Qualitative Methods in Sociological Research by Jeff Sallaz LAST REVIEWED: 27 July 2011 LAST MODIFIED: 27 July 2011 DOI: 10.1093/obo/9780199756384-0043

Qualitative research methods have a long and distinguished history within sociology. They trace their roots back to Max Weber’s call for an interpretive understanding of action. Today, qualitative sociology encompasses a variety of specific procedures for collecting data, ranging from life history interviews to direct observation of social interaction to embedded participant observation. In all of these cases, the social scientist directly interacts with those whom he or she is studying. The social scientist attempts to see the world from their perspective and to interpret their practices in a meaningful way. In fact, scholars such as Howard Becker and Clifford Geertz have argued that the ultimate test of the validity of a qualitative research study is whether it produces an account of social action that would make sense to the actors themselves. As this would imply, the foundational logic underlying qualitative studies differs from that of variable-oriented quantitative research. The latter measures particular properties of social phenomena and then uses statistical models to determine patterns of association among these properties, or variables. Because these models require a larger number of cases to establish statistically significant associations, quantitative researchers necessarily must sacrifice depth for breadth. Qualitative researchers, in contrast, are comfortable working with a small number of cases, or even a single case. They have at their disposal a variety of assumptions, theories, and methods to produce rich accounts of social life. In addition, qualitative research can offer unique insight into the relationship between microsocial and macrosocial worlds and even global forces.

The following texts offer the interested reader a general introduction to basic principles and debates associated with qualitative research methods. Ross 1992 and Abbott 1999 situate these methods in historical context. During the first half of the 20th century, ethnographic field research was the gold standard for sociology—especially at the famed Chicago school. The same was true in much of Europe, as Masson 2008 describes in the case of France. Katz 1997 , Burawoy 1998 , and Steinmetz 2005 , in turn, defend ethnography against recent critiques that it does not represent a legitimate mode of inquiry according to the standards of positivist science. That such debates are intertwined with larger moral concerns is demonstrated by Smith 2005 and Van Manen 1990 , both of which argue that qualitative methods are uniquely suited to study the lives of oppressed and subaltern groups.

Abbott, Andrew. 1999. Department and discipline: Chicago sociology at one hundred . Chicago: Univ. of Chicago Press.

Robert Park, a sociologist at the University of Chicago in the early 20th century, ordered his students to “Go get the seat of your pants dirty.” Abbott offers a balanced insider account of the famed Chicago School of ethnographic field research.

Burawoy, Michael. 1998. The extended case method. Sociological Theory 16.1: 5–33.

Argues that qualitative methods should not be held to the standards of “positive science.” Rather, they represent an equally valid mode of analysis grounded in a “reflexive science.”

Katz, Jack. 1997. Ethnography’s warrants. Sociological Methods and Research 25.4: 391–423.

DOI: 10.1177/0049124197025004002

Addresses the question how qualitative researchers can justify, or warrant, their case studies in relation to potentially hostile audiences who adhere to a mainstream quantitative view.

Masson, Philippe. 2008. Faire de la sociologie: Les grandes enquêtes françaises depuis 1945 . Grands repères. Guides. Paris: La Découverte.

Currently available only in French, this book covers the history of qualitative field methods in French sociology, especially the diffusion of ideas from the United States.

Ross, Dorothy. 1992. The origins of American social science . Ideas in Context. New York: Cambridge Univ. Press.

A comprehensive study of the history of sociology in America, this book argues that the legitimacy of qualitative research has been tied to the preeminence of various universities, departments, and faculties.

Smith, Dorothy. 2005. Institutional ethnography: A sociology for people . Gender Lens series. Lanham, MD: AltaMira.

Argues persuasively that ethnographers have a responsibility to impart in their research subjects an understanding of the powerful external forces shaping their everyday life worlds. Very much in the spirit of what C. Wright Mills referred to as the sociological imagination: the capacity to understand personal issues in the context of larger public problems.

Steinmetz, George, ed. 2005. The politics of method in the human sciences: Positivism and its epistemological others . Politics, History and Culture. Durham, NC: Duke Univ. Press.

Collection of essays examining how positivism (i.e., an epistemology valorizing empirical observations and the application of the scientific method) came to dominate many human sciences, including sociology. Qualitative researchers often have to deal with the critique that their methods do not meet the standards of positivism.

Van Manen, Max. 1990. Researching lived experience: Human science for an action sensitive pedagogy . SUNY Series in Philosophy of Education. Albany: State Univ. of New York Press.

A short but powerful book offering an accessible introduction to hermeneutic and phenomenological methods. It focuses on the applied aspects of qualitative methods for simultaneously teaching and learning from our subjects.

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The Oxford Handbook of Qualitative Research (2nd edn)

Patricia Leavy Independent Scholar Kennebunk, ME, USA

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The Oxford Handbook of Qualitative Research, second edition, presents a comprehensive retrospective and prospective review of the field of qualitative research. Original, accessible chapters written by interdisciplinary leaders in the field make this a critical reference work. Filled with robust examples from real-world research; ample discussion of the historical, theoretical, and methodological foundations of the field; and coverage of key issues including data collection, interpretation, representation, assessment, and teaching, this handbook aims to be a valuable text for students, professors, and researchers. This newly revised and expanded edition features up-to-date examples and topics, including seven new chapters on duoethnography, team research, writing ethnographically, creative approaches to writing, writing for performance, writing for the public, and teaching qualitative research.

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• USC Libraries
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Organizing Your Social Sciences Research Paper

• Qualitative Methods
• Purpose of Guide
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The word qualitative implies an emphasis on the qualities of entities and on processes and meanings that are not experimentally examined or measured [if measured at all] in terms of quantity, amount, intensity, or frequency. Qualitative researchers stress the socially constructed nature of reality, the intimate relationship between the researcher and what is studied, and the situational constraints that shape inquiry. Such researchers emphasize the value-laden nature of inquiry. They seek answers to questions that stress how social experience is created and given meaning. In contrast, quantitative studies emphasize the measurement and analysis of causal relationships between variables, not processes. Qualitative forms of inquiry are considered by many social and behavioral scientists to be as much a perspective on how to approach investigating a research problem as it is a method.

Denzin, Norman. K. and Yvonna S. Lincoln. “Introduction: The Discipline and Practice of Qualitative Research.” In The Sage Handbook of Qualitative Research . Norman. K. Denzin and Yvonna S. Lincoln, eds. 3 rd edition. (Thousand Oaks, CA: Sage, 2005), p. 10.

Characteristics of Qualitative Research

Below are the three key elements that define a qualitative research study and the applied forms each take in the investigation of a research problem.

• Naturalistic -- refers to studying real-world situations as they unfold naturally; non-manipulative and non-controlling; the researcher is open to whatever emerges [i.e., there is a lack of predetermined constraints on findings].
• Emergent -- acceptance of adapting inquiry as understanding deepens and/or situations change; the researcher avoids rigid designs that eliminate responding to opportunities to pursue new paths of discovery as they emerge.
• Purposeful -- cases for study [e.g., people, organizations, communities, cultures, events, critical incidences] are selected because they are “information rich” and illuminative. That is, they offer useful manifestations of the phenomenon of interest; sampling is aimed at insight about the phenomenon, not empirical generalization derived from a sample and applied to a population.

The Collection of Data

• Data -- observations yield a detailed, "thick description" [in-depth understanding]; interviews capture direct quotations about people’s personal perspectives and lived experiences; often derived from carefully conducted case studies and review of material culture.
• Personal experience and engagement -- researcher has direct contact with and gets close to the people, situation, and phenomenon under investigation; the researcher’s personal experiences and insights are an important part of the inquiry and critical to understanding the phenomenon.
• Empathic neutrality -- an empathic stance in working with study respondents seeks vicarious understanding without judgment [neutrality] by showing openness, sensitivity, respect, awareness, and responsiveness; in observation, it means being fully present [mindfulness].
• Dynamic systems -- there is attention to process; assumes change is ongoing, whether the focus is on an individual, an organization, a community, or an entire culture, therefore, the researcher is mindful of and attentive to system and situational dynamics.

The Analysis

• Unique case orientation -- assumes that each case is special and unique; the first level of analysis is being true to, respecting, and capturing the details of the individual cases being studied; cross-case analysis follows from and depends upon the quality of individual case studies.
• Inductive analysis -- immersion in the details and specifics of the data to discover important patterns, themes, and inter-relationships; begins by exploring, then confirming findings, guided by analytical principles rather than rules.
• Holistic perspective -- the whole phenomenon under study is understood as a complex system that is more than the sum of its parts; the focus is on complex interdependencies and system dynamics that cannot be reduced in any meaningful way to linear, cause and effect relationships and/or a few discrete variables.
• Context sensitive -- places findings in a social, historical, and temporal context; researcher is careful about [even dubious of] the possibility or meaningfulness of generalizations across time and space; emphasizes careful comparative case study analysis and extrapolating patterns for possible transferability and adaptation in new settings.
• Voice, perspective, and reflexivity -- the qualitative methodologist owns and is reflective about her or his own voice and perspective; a credible voice conveys authenticity and trustworthiness; complete objectivity being impossible and pure subjectivity undermining credibility, the researcher's focus reflects a balance between understanding and depicting the world authentically in all its complexity and of being self-analytical, politically aware, and reflexive in consciousness.

Berg, Bruce Lawrence. Qualitative Research Methods for the Social Sciences . 8th edition. Boston, MA: Allyn and Bacon, 2012; Denzin, Norman. K. and Yvonna S. Lincoln. Handbook of Qualitative Research . 2nd edition. Thousand Oaks, CA: Sage, 2000; Marshall, Catherine and Gretchen B. Rossman. Designing Qualitative Research . 2nd ed. Thousand Oaks, CA: Sage Publications, 1995; Merriam, Sharan B. Qualitative Research: A Guide to Design and Implementation . San Francisco, CA: Jossey-Bass, 2009.

Basic Research Design for Qualitative Studies

Unlike positivist or experimental research that utilizes a linear and one-directional sequence of design steps, there is considerable variation in how a qualitative research study is organized. In general, qualitative researchers attempt to describe and interpret human behavior based primarily on the words of selected individuals [a.k.a., “informants” or “respondents”] and/or through the interpretation of their material culture or occupied space. There is a reflexive process underpinning every stage of a qualitative study to ensure that researcher biases, presuppositions, and interpretations are clearly evident, thus ensuring that the reader is better able to interpret the overall validity of the research. According to Maxwell (2009), there are five, not necessarily ordered or sequential, components in qualitative research designs. How they are presented depends upon the research philosophy and theoretical framework of the study, the methods chosen, and the general assumptions underpinning the study. Goals Describe the central research problem being addressed but avoid describing any anticipated outcomes. Questions to ask yourself are: Why is your study worth doing? What issues do you want to clarify, and what practices and policies do you want it to influence? Why do you want to conduct this study, and why should the reader care about the results? Conceptual Framework Questions to ask yourself are: What do you think is going on with the issues, settings, or people you plan to study? What theories, beliefs, and prior research findings will guide or inform your research, and what literature, preliminary studies, and personal experiences will you draw upon for understanding the people or issues you are studying? Note to not only report the results of other studies in your review of the literature, but note the methods used as well. If appropriate, describe why earlier studies using quantitative methods were inadequate in addressing the research problem. Research Questions Usually there is a research problem that frames your qualitative study and that influences your decision about what methods to use, but qualitative designs generally lack an accompanying hypothesis or set of assumptions because the findings are emergent and unpredictable. In this context, more specific research questions are generally the result of an interactive design process rather than the starting point for that process. Questions to ask yourself are: What do you specifically want to learn or understand by conducting this study? What do you not know about the things you are studying that you want to learn? What questions will your research attempt to answer, and how are these questions related to one another? Methods Structured approaches to applying a method or methods to your study help to ensure that there is comparability of data across sources and researchers and, thus, they can be useful in answering questions that deal with differences between phenomena and the explanation for these differences [variance questions]. An unstructured approach allows the researcher to focus on the particular phenomena studied. This facilitates an understanding of the processes that led to specific outcomes, trading generalizability and comparability for internal validity and contextual and evaluative understanding. Questions to ask yourself are: What will you actually do in conducting this study? What approaches and techniques will you use to collect and analyze your data, and how do these constitute an integrated strategy? Validity In contrast to quantitative studies where the goal is to design, in advance, “controls” such as formal comparisons, sampling strategies, or statistical manipulations to address anticipated and unanticipated threats to validity, qualitative researchers must attempt to rule out most threats to validity after the research has begun by relying on evidence collected during the research process itself in order to effectively argue that any alternative explanations for a phenomenon are implausible. Questions to ask yourself are: How might your results and conclusions be wrong? What are the plausible alternative interpretations and validity threats to these, and how will you deal with these? How can the data that you have, or that you could potentially collect, support or challenge your ideas about what’s going on? Why should we believe your results? Conclusion Although Maxwell does not mention a conclusion as one of the components of a qualitative research design, you should formally conclude your study. Briefly reiterate the goals of your study and the ways in which your research addressed them. Discuss the benefits of your study and how stakeholders can use your results. Also, note the limitations of your study and, if appropriate, place them in the context of areas in need of further research.

Chenail, Ronald J. Introduction to Qualitative Research Design. Nova Southeastern University; Heath, A. W. The Proposal in Qualitative Research. The Qualitative Report 3 (March 1997); Marshall, Catherine and Gretchen B. Rossman. Designing Qualitative Research . 3rd edition. Thousand Oaks, CA: Sage, 1999; Maxwell, Joseph A. "Designing a Qualitative Study." In The SAGE Handbook of Applied Social Research Methods . Leonard Bickman and Debra J. Rog, eds. 2nd ed. (Thousand Oaks, CA: Sage, 2009), p. 214-253; Qualitative Research Methods. Writing@CSU. Colorado State University; Yin, Robert K. Qualitative Research from Start to Finish . 2nd edition. New York: Guilford, 2015.

Strengths of Using Qualitative Methods

The advantage of using qualitative methods is that they generate rich, detailed data that leave the participants' perspectives intact and provide multiple contexts for understanding the phenomenon under study. In this way, qualitative research can be used to vividly demonstrate phenomena or to conduct cross-case comparisons and analysis of individuals or groups.

Among the specific strengths of using qualitative methods to study social science research problems is the ability to:

• Obtain a more realistic view of the lived world that cannot be understood or experienced in numerical data and statistical analysis;
• Provide the researcher with the perspective of the participants of the study through immersion in a culture or situation and as a result of direct interaction with them;
• Allow the researcher to describe existing phenomena and current situations;
• Develop flexible ways to perform data collection, subsequent analysis, and interpretation of collected information;
• Yield results that can be helpful in pioneering new ways of understanding;
• Respond to changes that occur while conducting the study ]e.g., extended fieldwork or observation] and offer the flexibility to shift the focus of the research as a result;
• Provide a holistic view of the phenomena under investigation;
• Respond to local situations, conditions, and needs of participants;
• Interact with the research subjects in their own language and on their own terms; and,
• Create a descriptive capability based on primary and unstructured data.

Anderson, Claire. “Presenting and Evaluating Qualitative Research.” American Journal of Pharmaceutical Education 74 (2010): 1-7; Denzin, Norman. K. and Yvonna S. Lincoln. Handbook of Qualitative Research . 2nd edition. Thousand Oaks, CA: Sage, 2000; Merriam, Sharan B. Qualitative Research: A Guide to Design and Implementation . San Francisco, CA: Jossey-Bass, 2009.

Limitations of Using Qualitative Methods

It is very much true that most of the limitations you find in using qualitative research techniques also reflect their inherent strengths . For example, small sample sizes help you investigate research problems in a comprehensive and in-depth manner. However, small sample sizes undermine opportunities to draw useful generalizations from, or to make broad policy recommendations based upon, the findings. Additionally, as the primary instrument of investigation, qualitative researchers are often embedded in the cultures and experiences of others. However, cultural embeddedness increases the opportunity for bias generated from conscious or unconscious assumptions about the study setting to enter into how data is gathered, interpreted, and reported.

Some specific limitations associated with using qualitative methods to study research problems in the social sciences include the following:

• Drifting away from the original objectives of the study in response to the changing nature of the context under which the research is conducted;
• Arriving at different conclusions based on the same information depending on the personal characteristics of the researcher;
• Replication of a study is very difficult;
• Research using human subjects increases the chance of ethical dilemmas that undermine the overall validity of the study;
• An inability to investigate causality between different research phenomena;
• Difficulty in explaining differences in the quality and quantity of information obtained from different respondents and arriving at different, non-consistent conclusions;
• Data gathering and analysis is often time consuming and/or expensive;
• Requires a high level of experience from the researcher to obtain the targeted information from the respondent;
• May lack consistency and reliability because the researcher can employ different probing techniques and the respondent can choose to tell some particular stories and ignore others; and,
• Generation of a significant amount of data that cannot be randomized into manageable parts for analysis.

Research Tip

Human Subject Research and Institutional Review Board Approval

Almost every socio-behavioral study requires you to submit your proposed research plan to an Institutional Review Board. The role of the Board is to evaluate your research proposal and determine whether it will be conducted ethically and under the regulations, institutional polices, and Code of Ethics set forth by the university. The purpose of the review is to protect the rights and welfare of individuals participating in your study. The review is intended to ensure equitable selection of respondents, that you have met the requirements for obtaining informed consent , that there is clear assessment and minimization of risks to participants and to the university [read: no lawsuits!], and that privacy and confidentiality are maintained throughout the research process and beyond. Go to the USC IRB website for detailed information and templates of forms you need to submit before you can proceed. If you are  unsure whether your study is subject to IRB review, consult with your professor or academic advisor.

Chenail, Ronald J. Introduction to Qualitative Research Design. Nova Southeastern University; Labaree, Robert V. "Working Successfully with Your Institutional Review Board: Practical Advice for Academic Librarians." College and Research Libraries News 71 (April 2010): 190-193.

Another Research Tip

Finding Examples of How to Apply Different Types of Research Methods

SAGE publications is a major publisher of studies about how to design and conduct research in the social and behavioral sciences. Their SAGE Research Methods Online and Cases database includes contents from books, articles, encyclopedias, handbooks, and videos covering social science research design and methods including the complete Little Green Book Series of Quantitative Applications in the Social Sciences and the Little Blue Book Series of Qualitative Research techniques. The database also includes case studies outlining the research methods used in real research projects. This is an excellent source for finding definitions of key terms and descriptions of research design and practice, techniques of data gathering, analysis, and reporting, and information about theories of research [e.g., grounded theory]. The database covers both qualitative and quantitative research methods as well as mixed methods approaches to conducting research.

SAGE Research Methods Online and Cases

NOTE :  For a list of online communities, research centers, indispensable learning resources, and personal websites of leading qualitative researchers, GO HERE .

For a list of scholarly journals devoted to the study and application of qualitative research methods, GO HERE .

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Home » Qualitative Research – Methods, Analysis Types and Guide

Qualitative Research – Methods, Analysis Types and Guide

Table of Contents

Qualitative Research

Qualitative research is a type of research methodology that focuses on exploring and understanding people’s beliefs, attitudes, behaviors, and experiences through the collection and analysis of non-numerical data. It seeks to answer research questions through the examination of subjective data, such as interviews, focus groups, observations, and textual analysis.

Qualitative research aims to uncover the meaning and significance of social phenomena, and it typically involves a more flexible and iterative approach to data collection and analysis compared to quantitative research. Qualitative research is often used in fields such as sociology, anthropology, psychology, and education.

Qualitative Research Methods

Qualitative Research Methods are as follows:

One-to-One Interview

This method involves conducting an interview with a single participant to gain a detailed understanding of their experiences, attitudes, and beliefs. One-to-one interviews can be conducted in-person, over the phone, or through video conferencing. The interviewer typically uses open-ended questions to encourage the participant to share their thoughts and feelings. One-to-one interviews are useful for gaining detailed insights into individual experiences.

Focus Groups

This method involves bringing together a group of people to discuss a specific topic in a structured setting. The focus group is led by a moderator who guides the discussion and encourages participants to share their thoughts and opinions. Focus groups are useful for generating ideas and insights, exploring social norms and attitudes, and understanding group dynamics.

Ethnographic Studies

This method involves immersing oneself in a culture or community to gain a deep understanding of its norms, beliefs, and practices. Ethnographic studies typically involve long-term fieldwork and observation, as well as interviews and document analysis. Ethnographic studies are useful for understanding the cultural context of social phenomena and for gaining a holistic understanding of complex social processes.

Text Analysis

This method involves analyzing written or spoken language to identify patterns and themes. Text analysis can be quantitative or qualitative. Qualitative text analysis involves close reading and interpretation of texts to identify recurring themes, concepts, and patterns. Text analysis is useful for understanding media messages, public discourse, and cultural trends.

This method involves an in-depth examination of a single person, group, or event to gain an understanding of complex phenomena. Case studies typically involve a combination of data collection methods, such as interviews, observations, and document analysis, to provide a comprehensive understanding of the case. Case studies are useful for exploring unique or rare cases, and for generating hypotheses for further research.

Process of Observation

This method involves systematically observing and recording behaviors and interactions in natural settings. The observer may take notes, use audio or video recordings, or use other methods to document what they see. Process of observation is useful for understanding social interactions, cultural practices, and the context in which behaviors occur.

Record Keeping

This method involves keeping detailed records of observations, interviews, and other data collected during the research process. Record keeping is essential for ensuring the accuracy and reliability of the data, and for providing a basis for analysis and interpretation.

This method involves collecting data from a large sample of participants through a structured questionnaire. Surveys can be conducted in person, over the phone, through mail, or online. Surveys are useful for collecting data on attitudes, beliefs, and behaviors, and for identifying patterns and trends in a population.

Qualitative data analysis is a process of turning unstructured data into meaningful insights. It involves extracting and organizing information from sources like interviews, focus groups, and surveys. The goal is to understand people’s attitudes, behaviors, and motivations

Qualitative Research Analysis Methods

Qualitative Research analysis methods involve a systematic approach to interpreting and making sense of the data collected in qualitative research. Here are some common qualitative data analysis methods:

Thematic Analysis

This method involves identifying patterns or themes in the data that are relevant to the research question. The researcher reviews the data, identifies keywords or phrases, and groups them into categories or themes. Thematic analysis is useful for identifying patterns across multiple data sources and for generating new insights into the research topic.

Content Analysis

This method involves analyzing the content of written or spoken language to identify key themes or concepts. Content analysis can be quantitative or qualitative. Qualitative content analysis involves close reading and interpretation of texts to identify recurring themes, concepts, and patterns. Content analysis is useful for identifying patterns in media messages, public discourse, and cultural trends.

Discourse Analysis

This method involves analyzing language to understand how it constructs meaning and shapes social interactions. Discourse analysis can involve a variety of methods, such as conversation analysis, critical discourse analysis, and narrative analysis. Discourse analysis is useful for understanding how language shapes social interactions, cultural norms, and power relationships.

Grounded Theory Analysis

This method involves developing a theory or explanation based on the data collected. Grounded theory analysis starts with the data and uses an iterative process of coding and analysis to identify patterns and themes in the data. The theory or explanation that emerges is grounded in the data, rather than preconceived hypotheses. Grounded theory analysis is useful for understanding complex social phenomena and for generating new theoretical insights.

Narrative Analysis

This method involves analyzing the stories or narratives that participants share to gain insights into their experiences, attitudes, and beliefs. Narrative analysis can involve a variety of methods, such as structural analysis, thematic analysis, and discourse analysis. Narrative analysis is useful for understanding how individuals construct their identities, make sense of their experiences, and communicate their values and beliefs.

Phenomenological Analysis

This method involves analyzing how individuals make sense of their experiences and the meanings they attach to them. Phenomenological analysis typically involves in-depth interviews with participants to explore their experiences in detail. Phenomenological analysis is useful for understanding subjective experiences and for developing a rich understanding of human consciousness.

Comparative Analysis

This method involves comparing and contrasting data across different cases or groups to identify similarities and differences. Comparative analysis can be used to identify patterns or themes that are common across multiple cases, as well as to identify unique or distinctive features of individual cases. Comparative analysis is useful for understanding how social phenomena vary across different contexts and groups.

Applications of Qualitative Research

Qualitative research has many applications across different fields and industries. Here are some examples of how qualitative research is used:

• Market Research: Qualitative research is often used in market research to understand consumer attitudes, behaviors, and preferences. Researchers conduct focus groups and one-on-one interviews with consumers to gather insights into their experiences and perceptions of products and services.
• Health Care: Qualitative research is used in health care to explore patient experiences and perspectives on health and illness. Researchers conduct in-depth interviews with patients and their families to gather information on their experiences with different health care providers and treatments.
• Education: Qualitative research is used in education to understand student experiences and to develop effective teaching strategies. Researchers conduct classroom observations and interviews with students and teachers to gather insights into classroom dynamics and instructional practices.
• Social Work : Qualitative research is used in social work to explore social problems and to develop interventions to address them. Researchers conduct in-depth interviews with individuals and families to understand their experiences with poverty, discrimination, and other social problems.
• Anthropology : Qualitative research is used in anthropology to understand different cultures and societies. Researchers conduct ethnographic studies and observe and interview members of different cultural groups to gain insights into their beliefs, practices, and social structures.
• Psychology : Qualitative research is used in psychology to understand human behavior and mental processes. Researchers conduct in-depth interviews with individuals to explore their thoughts, feelings, and experiences.
• Public Policy : Qualitative research is used in public policy to explore public attitudes and to inform policy decisions. Researchers conduct focus groups and one-on-one interviews with members of the public to gather insights into their perspectives on different policy issues.

How to Conduct Qualitative Research

Here are some general steps for conducting qualitative research:

• Identify your research question: Qualitative research starts with a research question or set of questions that you want to explore. This question should be focused and specific, but also broad enough to allow for exploration and discovery.
• Select your research design: There are different types of qualitative research designs, including ethnography, case study, grounded theory, and phenomenology. You should select a design that aligns with your research question and that will allow you to gather the data you need to answer your research question.
• Recruit participants: Once you have your research question and design, you need to recruit participants. The number of participants you need will depend on your research design and the scope of your research. You can recruit participants through advertisements, social media, or through personal networks.
• Collect data: There are different methods for collecting qualitative data, including interviews, focus groups, observation, and document analysis. You should select the method or methods that align with your research design and that will allow you to gather the data you need to answer your research question.
• Analyze data: Once you have collected your data, you need to analyze it. This involves reviewing your data, identifying patterns and themes, and developing codes to organize your data. You can use different software programs to help you analyze your data, or you can do it manually.
• Interpret data: Once you have analyzed your data, you need to interpret it. This involves making sense of the patterns and themes you have identified, and developing insights and conclusions that answer your research question. You should be guided by your research question and use your data to support your conclusions.
• Communicate results: Once you have interpreted your data, you need to communicate your results. This can be done through academic papers, presentations, or reports. You should be clear and concise in your communication, and use examples and quotes from your data to support your findings.

Examples of Qualitative Research

Here are some real-time examples of qualitative research:

• Customer Feedback: A company may conduct qualitative research to understand the feedback and experiences of its customers. This may involve conducting focus groups or one-on-one interviews with customers to gather insights into their attitudes, behaviors, and preferences.
• Healthcare : A healthcare provider may conduct qualitative research to explore patient experiences and perspectives on health and illness. This may involve conducting in-depth interviews with patients and their families to gather information on their experiences with different health care providers and treatments.
• Education : An educational institution may conduct qualitative research to understand student experiences and to develop effective teaching strategies. This may involve conducting classroom observations and interviews with students and teachers to gather insights into classroom dynamics and instructional practices.
• Social Work: A social worker may conduct qualitative research to explore social problems and to develop interventions to address them. This may involve conducting in-depth interviews with individuals and families to understand their experiences with poverty, discrimination, and other social problems.
• Anthropology : An anthropologist may conduct qualitative research to understand different cultures and societies. This may involve conducting ethnographic studies and observing and interviewing members of different cultural groups to gain insights into their beliefs, practices, and social structures.
• Psychology : A psychologist may conduct qualitative research to understand human behavior and mental processes. This may involve conducting in-depth interviews with individuals to explore their thoughts, feelings, and experiences.
• Public Policy: A government agency or non-profit organization may conduct qualitative research to explore public attitudes and to inform policy decisions. This may involve conducting focus groups and one-on-one interviews with members of the public to gather insights into their perspectives on different policy issues.

Purpose of Qualitative Research

The purpose of qualitative research is to explore and understand the subjective experiences, behaviors, and perspectives of individuals or groups in a particular context. Unlike quantitative research, which focuses on numerical data and statistical analysis, qualitative research aims to provide in-depth, descriptive information that can help researchers develop insights and theories about complex social phenomena.

Qualitative research can serve multiple purposes, including:

• Exploring new or emerging phenomena : Qualitative research can be useful for exploring new or emerging phenomena, such as new technologies or social trends. This type of research can help researchers develop a deeper understanding of these phenomena and identify potential areas for further study.
• Understanding complex social phenomena : Qualitative research can be useful for exploring complex social phenomena, such as cultural beliefs, social norms, or political processes. This type of research can help researchers develop a more nuanced understanding of these phenomena and identify factors that may influence them.
• Generating new theories or hypotheses: Qualitative research can be useful for generating new theories or hypotheses about social phenomena. By gathering rich, detailed data about individuals’ experiences and perspectives, researchers can develop insights that may challenge existing theories or lead to new lines of inquiry.
• Providing context for quantitative data: Qualitative research can be useful for providing context for quantitative data. By gathering qualitative data alongside quantitative data, researchers can develop a more complete understanding of complex social phenomena and identify potential explanations for quantitative findings.

When to use Qualitative Research

Here are some situations where qualitative research may be appropriate:

• Exploring a new area: If little is known about a particular topic, qualitative research can help to identify key issues, generate hypotheses, and develop new theories.
• Understanding complex phenomena: Qualitative research can be used to investigate complex social, cultural, or organizational phenomena that are difficult to measure quantitatively.
• Investigating subjective experiences: Qualitative research is particularly useful for investigating the subjective experiences of individuals or groups, such as their attitudes, beliefs, values, or emotions.
• Conducting formative research: Qualitative research can be used in the early stages of a research project to develop research questions, identify potential research participants, and refine research methods.
• Evaluating interventions or programs: Qualitative research can be used to evaluate the effectiveness of interventions or programs by collecting data on participants’ experiences, attitudes, and behaviors.

Characteristics of Qualitative Research

Qualitative research is characterized by several key features, including:

• Focus on subjective experience: Qualitative research is concerned with understanding the subjective experiences, beliefs, and perspectives of individuals or groups in a particular context. Researchers aim to explore the meanings that people attach to their experiences and to understand the social and cultural factors that shape these meanings.
• Use of open-ended questions: Qualitative research relies on open-ended questions that allow participants to provide detailed, in-depth responses. Researchers seek to elicit rich, descriptive data that can provide insights into participants’ experiences and perspectives.
• Sampling-based on purpose and diversity: Qualitative research often involves purposive sampling, in which participants are selected based on specific criteria related to the research question. Researchers may also seek to include participants with diverse experiences and perspectives to capture a range of viewpoints.
• Data collection through multiple methods: Qualitative research typically involves the use of multiple data collection methods, such as in-depth interviews, focus groups, and observation. This allows researchers to gather rich, detailed data from multiple sources, which can provide a more complete picture of participants’ experiences and perspectives.
• Inductive data analysis: Qualitative research relies on inductive data analysis, in which researchers develop theories and insights based on the data rather than testing pre-existing hypotheses. Researchers use coding and thematic analysis to identify patterns and themes in the data and to develop theories and explanations based on these patterns.
• Emphasis on researcher reflexivity: Qualitative research recognizes the importance of the researcher’s role in shaping the research process and outcomes. Researchers are encouraged to reflect on their own biases and assumptions and to be transparent about their role in the research process.

Advantages of Qualitative Research

Qualitative research offers several advantages over other research methods, including:

• Depth and detail: Qualitative research allows researchers to gather rich, detailed data that provides a deeper understanding of complex social phenomena. Through in-depth interviews, focus groups, and observation, researchers can gather detailed information about participants’ experiences and perspectives that may be missed by other research methods.
• Flexibility : Qualitative research is a flexible approach that allows researchers to adapt their methods to the research question and context. Researchers can adjust their research methods in real-time to gather more information or explore unexpected findings.
• Contextual understanding: Qualitative research is well-suited to exploring the social and cultural context in which individuals or groups are situated. Researchers can gather information about cultural norms, social structures, and historical events that may influence participants’ experiences and perspectives.
• Participant perspective : Qualitative research prioritizes the perspective of participants, allowing researchers to explore subjective experiences and understand the meanings that participants attach to their experiences.
• Theory development: Qualitative research can contribute to the development of new theories and insights about complex social phenomena. By gathering rich, detailed data and using inductive data analysis, researchers can develop new theories and explanations that may challenge existing understandings.
• Validity : Qualitative research can offer high validity by using multiple data collection methods, purposive and diverse sampling, and researcher reflexivity. This can help ensure that findings are credible and trustworthy.

Limitations of Qualitative Research

Qualitative research also has some limitations, including:

• Subjectivity : Qualitative research relies on the subjective interpretation of researchers, which can introduce bias into the research process. The researcher’s perspective, beliefs, and experiences can influence the way data is collected, analyzed, and interpreted.
• Limited generalizability: Qualitative research typically involves small, purposive samples that may not be representative of larger populations. This limits the generalizability of findings to other contexts or populations.
• Time-consuming: Qualitative research can be a time-consuming process, requiring significant resources for data collection, analysis, and interpretation.
• Resource-intensive: Qualitative research may require more resources than other research methods, including specialized training for researchers, specialized software for data analysis, and transcription services.
• Limited reliability: Qualitative research may be less reliable than quantitative research, as it relies on the subjective interpretation of researchers. This can make it difficult to replicate findings or compare results across different studies.
• Ethics and confidentiality: Qualitative research involves collecting sensitive information from participants, which raises ethical concerns about confidentiality and informed consent. Researchers must take care to protect the privacy and confidentiality of participants and obtain informed consent.

Also see Research Methods

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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Research Design Review

A discussion of qualitative & quantitative research design, contextual analysis: a fundamental attribute of qualitative research.

One of the 10 unique or distinctive attributes of qualitative research is contextual, multilayered analysis. This is a fundamental aspect of qualitative research and, in fact, plays a central role in the unique attributes associated with data generation, i.e., the importance of context, the importance of meaning, the participant-researcher relationship , and researcher as instrument —

“…the interconnections, inconsistencies, and sometimes seemingly illogical input reaped in qualitative research demand that researchers embrace the tangles of their data from many sources. There is no single source of analysis in qualitative research because any one research event consists of multiple variables that need consideration in the analysis phase. The analyzable data from an in-depth interview, for example, are more than just what was said in the interview; they also include a variety of other considerations, such as the context in which certain information was revealed and the interviewee–interviewer relationship.” (Roller & Lavrakas, pp. 7-8)

The ability — the opportunity — to contextually analyze qualitative data is also associated with basic components of research design, such as sample size and the risk of relying on saturation which “misguides the researcher towards prioritizing manifest content over the pursuit of contextual understanding derived from latent, less obvious data.” And the defining differentiator between a qualitative and quantitative approach, such as qualitative content analysis in which it is “the inductive strategy in search of latent content, the use of context, the back-and-forth flexibility throughout the analytical process, and the continual questioning of preliminary interpretations that set qualitative content analysis apart from the quantitative method.”

There are many ways that context is integrated into the qualitative data analysis process to ensure quality analytical outcomes and interpretations . Various articles in Research Design Review have discussed contextually grounded aspects of the process, such as the following (each header links to the corresponding RDR article).

Unit of Analysis

“Although there is no perfect prescription for every study, it is generally understood that researchers should strive for a unit of analysis that retains the context necessary to derive meaning from the data. For this reason, and if all other things are equal, the qualitative researcher should probably err on the side of using a broader, more contextually based unit of analysis rather than a narrowly focused level of analysis (e.g., sentences).”

Meaning of Words

“How we use our words provides the context that shapes what the receiver hears and the perceptions others associate with our words. Context pertains to apparent as well as unapparent influences that take the meaning of our words beyond their proximity to other words [or] their use in recognized terms or phrases…”

Categorical Buckets

“No one said that qualitative data analysis is simple or straightforward. A reason for this lies in the fact that an important ingredient to the process is maintaining participants’ context and potential multiple meanings of the data. By identifying and analyzing categorical buckets, the researcher respects this multi-faceted reality and ultimately reaps the reward of useful interpretations of the data.”

Use of Transcripts

“Although serving a utilitarian purpose, transcripts effectively convert the all-too-human research experience that defines qualitative inquiry to the relatively emotionless drab confines of black-on-white text. Gone is the profound mood swing that descended over the participant when the interviewer asked about his elderly mother. Yes, there is text in the transcript that conveys some aspect of this mood but only to the extent that the participant is able to articulate it.”

Use of Recordings

“Unlike the transcript, the recording reminds the researcher of how and when the atmosphere in the [focus] group environment shifted from being open and friendly to quiet and inhibited; and how the particular seating arrangement, coupled with incompatible personality types, inflamed the atmosphere and seriously colored participants’ words, engagement, and way of thinking.”

Roller, M. R., & Lavrakas, P. J. (2015). Applied qualitative research design: A total quality framework approach . New York: Guilford Press.

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• Open access
• Published: 13 May 2024

What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review

• Olivia R. Phillips 1 , 2   na1 ,
• Cerian Harries 2 , 3   na1 ,
• Jo Leonardi-Bee 1 , 2 , 4   na1 ,
• Holly Knight 1 , 2 ,
• Lauren B. Sherar 2 , 3 ,
• Veronica Varela-Mato 2 , 3 &
• Joanne R. Morling 1 , 2 , 5  

Research Involvement and Engagement volume  10 , Article number:  48 ( 2024 ) Cite this article

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Metrics details

There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.

To determine the strengths and limitations to using creative PPI methods in health and social care research.

Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.

Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or “taboo” topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.

‘Creative PPI’ is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.

Plain English Summary

It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.

Peer Review reports

Introduction

Patient and public involvement (PPI) is the term used to describe the partnership between patients (including caregivers, potential patients, healthcare users etc.) or the public (a community member with no known interest in the topic) with researchers. It describes research that is done “‘with’ or ‘by’ the public, rather than ‘to,’ ‘about’ or ‘for’ them” [ 1 ]. In 2009, it became a legislative requirement for certain health and social care organisations to include patients, families, carers and communities in not only the planning of health and social care services, but the commissioning, delivery and evaluation of them too [ 2 ]. For example, funding applications for the National Institute of Health and Care Research (NIHR), a UK funding body, mandates a demonstration of how researchers plan to include patients/service users, the public and carers at each stage of the project [ 3 ]. However, this should not simply be a tokenistic, tick-box exercise. PPI should help formulate initial ideas and should be an instrumental, continuous part of the research process. Input from PPI can provide unique insights not yet considered and can ensure that research and health services are closely aligned to the needs and requirements of service users PPI also generally makes research more relevant with clearer outcomes and impacts [ 4 ]. Although this review refers to both patients and the public using the umbrella term ‘PPI’, it is important to acknowledge that these are two different groups with different motivations, needs and interests when it comes to health research and service delivery [ 5 ].

Despite continuing recognition of the need of PPI to improve quality of healthcare, researchers have also recognised that there is no ‘one size fits all’ method for involving patients [ 4 ]. Traditionally, PPI methods invite people to take part in interviews or focus groups to facilitate discussion, or surveys and questionnaires. However, these can sometimes be inaccessible or non-engaging for certain populations. For example, someone with communication difficulties may find it difficult to engage in focus groups or interviews. If individuals lack the appropriate skills to interact in these types of scenarios, they cannot take advantage of the participation opportunities it can provide [ 6 ]. Creative methods, however, aim to resolve these issues. These are a relatively new concept whereby researchers use creative methods (e.g., artwork, animations, Lego), to make PPI more accessible and engaging for those whose voices would otherwise go unheard. They ensure that all populations can engage in research, regardless of their background or skills. Seminal work has previously been conducted in this area, which brought to light the use of creative methodologies in research. Leavy (2008) [ 7 ] discussed how traditional interviews had limits on what could be expressed due to their sterile, jargon-filled and formulaic structure, read by only a few specialised academics. It was this that called for more creative approaches, which included narrative enquiry, fiction-based research, poetry, music, dance, art, theatre, film and visual art. These practices, which can be used in any stage of the research cycle, supported greater empathy, self-reflection and longer-lasting learning experiences compared to interviews [ 7 ]. They also pushed traditional academic boundaries, which made the research accessible not only to researchers, but the public too. Leavy explains that there are similarities between arts-based approaches and scientific approaches: both attempts to investigate what it means to be human through exploration, and used together, these complimentary approaches can progress our understanding of the human experience [ 7 ]. Further, it is important to acknowledge the parallels and nuances between creative and inclusive methods of PPI. Although creative methods aim to be inclusive (this should underlie any PPI activity, whether creative or not), they do not incorporate all types of accessible, inclusive methodologies e.g., using sign language for people with hearing impairments or audio recordings for people who cannot read. Given that there was not enough scope to include an evaluation of all possible inclusive methodologies, this review will focus on creative methods of PPI only.

We aimed to conduct a qualitative systematic review to highlight the strengths of creative PPI in health and social care research, as well as the limitations, which might act as a barrier to their implementation. A qualitative systematic review “brings together research on a topic, systematically searching for research evidence from primary qualitative studies and drawing the findings together” [ 8 ]. This review can then advise researchers of the best practices when designing PPI.

Public involvement

The PHIRST-LIGHT Public Advisory Group (PAG) consists of a team of experienced public contributors with a diverse range of characteristics from across the UK. The PAG was involved in the initial question setting and study design for this review.

Search strategy

For the purpose of this review, the JBI approach for conducting qualitative systematic reviews was followed [ 9 ]. The search terms were (“creativ*” OR “innovat*” OR “authentic” OR “original” OR “inclu*”) AND (“public and patient involvement” OR “patient and public involvement” OR “public and patient involvement and engagement” OR “patient and public involvement and engagement” OR “PPI” OR “PPIE” OR “co-produc*” OR “co-creat*” OR “co-design*” OR “cooperat*” OR “co-operat*”). This search string was modified according to the requirements of each database. Papers were filtered by title, abstract and keywords (see Additional file 1 for search strings). The databases searched included Web of Science (WoS), PubMed, ASSIA and CINAHL. The Cochrane Library was also searched to identify relevant reviews which could lead to the identification of primary research. The search was conducted on 14/04/23. As our aim was to report on the use of creative PPI in research, rather than more generic public engagement, we used electronic databases of scholarly peer-reviewed literature, which represent a wide range of recognised databases. These identified studies published in general international journals (WoS, PubMed), those in social sciences journals (ASSIA), those in nursing and allied health journals (CINAHL), and trials of interventions (Cochrane Library).

Inclusion criteria

Only full-text, English language, primary research papers from 2009 to 2023 were included. This was the chosen timeframe as in 2009 the Health and Social Reform Act made it mandatory for certain Health and Social Care organisations to involve the public and patients in planning, delivering, and evaluating services [ 2 ]. Only creative methods of PPI were accepted, rather than traditional methods, such as interviews or focus groups. For the purposes of this paper, creative PPI included creative art or arts-based approaches (e.g., e.g. stories, songs, drama, drawing, painting, poetry, photography) to enhance engagement. Titles were related to health and social care and the creative PPI was used to engage with people as research advisors, not as study participants. Meta-analyses, conference abstracts, book chapters, commentaries and reviews were excluded. There were no limits concerning study location or the demographic characteristics of the PPI groups. Only qualitative data were accepted.

Quality appraisal

Quality appraisal using the Critical Appraisal Skills Programme (CASP) checklist [ 10 ] was conducted by the primary authors (ORP and CH). This was done independently, and discrepancies were discussed and resolved. If a consensus could not be reached, a third independent reviewer was consulted (JRM). The full list of quality appraisal questions can be found in Additional file 2 .

Data extraction

ORP extracted the study characteristics and a subset of these were checked by CH. Discrepancies were discussed and amendments made. Extracted data included author, title, location, year of publication, year study was carried out, research question/aim, creative methods used, number of participants, mean age, gender, ethnicity of participants, setting, limitations and strengths of creative PPI and main findings.

Data analysis

The included studies were analysed using inductive thematic analysis [ 11 ], where themes were determined by the data. The familiarisation stage took place during full-text reading of the included articles. Anything identified as a strength or limitation to creative PPI methods was extracted verbatim as an initial code and inputted into the data extraction Excel sheet. Similar codes were sorted into broader themes, either under ‘strengths’ or ‘limitations’ and reviewed. Themes were then assigned a name according to the codes.

The search yielded 9978 titles across the 5 databases: Web of Science (1480 results), PubMed (94 results), ASSIA (2454 results), CINAHL (5948 results) and Cochrane Library (2 results), resulting in 8553 different studies after deduplication. ORP and CH independently screened their titles and abstracts, excluding those that did not meet the criteria. After assessment, 12 studies were included (see Fig.  1 ).

PRISMA flowchart of the study selection process

Study characteristics

The included studies were published between 2018 and 2022. Seven were conducted in the UK [ 12 , 14 , 15 , 17 , 18 , 19 , 23 ], two in Canada [ 21 , 22 ], one in Australia [ 13 ], one in Norway [ 16 ] and one in Ireland [ 20 ]. The PPI activities occurred across various settings, including a school [ 12 ], social club [ 12 ], hospital [ 17 ], university [ 22 ], theatre [ 19 ], hotel [ 20 ], or online [ 15 , 21 ], however this information was omitted in 5 studies [ 13 , 14 , 16 , 18 , 23 ]. The number of people attending the PPI sessions varied, ranging from 6 to 289, however the majority (ten studies) had less than 70 participants [ 13 , 14 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. Seven studies did not provide information on the age or gender of the PPI groups. Of those that did, ages ranged from 8 to 76 and were mostly female. The ethnicities of the PPI group members were also rarely recorded (see Additional file 3 for data extraction table).

Types of creative methods

The type of creative methods used to engage the PPI groups were varied. These included songs, poems, drawings, photograph elicitation, drama performance, visualisations, Facebook, photography, prototype development, cultural animation, card sorting and creating personas (see Table  1 ). These were sometimes accompanied by traditional methods of PPI such as interviews and focus group discussions.

The 12 included studies were all deemed to be of good methodological quality, with scores ranging from 6/10 to 10/10 with the CASP critical appraisal tool [ 10 ] (Table  2 ).

Thematic analysis

Analysis identified four limitations and five strengths to creative PPI (see Fig.  2 ). Limitations included the time and resource intensity of creative PPI methods, its lack of generalisation, ethical issues and external factors. Strengths included the disruption of power hierarchies, the engaging and inclusive nature of the methods and their long-term cost and time efficiency. Creative PPI methods also allowed mundane and “taboo” topics to be discussed within a safe space.

Theme map of strengths and limitations

Limitations of creative PPI

Creative ppi methods are time and resource intensive.

The time and resource intensive nature of creative PPI methods is a limitation, most notably for the persona-scenario methodology. Valaitis et al. [ 22 ] used 14 persona-scenario workshops with 70 participants to co-design a healthcare intervention, which aimed to promote optimal aging in Canada. Using the persona method, pairs composed of patients, healthcare providers, community service providers and volunteers developed a fictional character which they believed represented an ‘end-user’ of the healthcare intervention. Due to the depth and richness of the data produced the authors reported that it was time consuming to analyse. Further, they commented that the amount of information was difficult to disseminate to scientific leads and present at team meetings. Additionally, to ensure the production of high-quality data, to probe for details and lead group discussion there was a need for highly skilled facilitators. The resource intensive nature of the creative co-production was also noted in a study using the persona scenario and creative worksheets to develop a prototype decision support tool for individuals with malignant pleural effusion [ 17 ]. With approximately 50 people, this was also likely to yield a high volume of data to consider.

To prepare materials for populations who cannot engage in traditional methods of PPI was also timely. Kearns et al. [ 18 ] developed a feedback questionnaire for people with aphasia to evaluate ICT-delivered rehabilitation. To ensure people could participate effectively, the resources used during the workshops, such as PowerPoints, online images and photographs, had to be aphasia-accessible, which was labour and time intensive. The author warned that this time commitment should not be underestimated.

There are further practical limitations to implementing creative PPI, such as the costs of materials for activities as well as hiring a space for workshops. For example, the included studies in this review utilised pens, paper, worksheets, laptops, arts and craft supplies and magazines and took place in venues such as universities, a social club, and a hotel. Further, although not limited to creative PPI methods exclusively but rather most studies involving the public, a financial incentive was often offered for participation, as well as food, parking, transport and accommodation [ 21 , 22 ].

Creative PPI lacks generalisation

Another barrier to the use of creative PPI methods in health and social care research was the individual nature of its output. Those who participate, usually small in number, produce unique creative outputs specific to their own experiences, opinions and location. Craven et al. [ 13 ], used arts-based visualisations to develop a toolbox for adults with mental health difficulties. They commented, “such an approach might still not be worthwhile”, as the visualisations were individualised and highly personal. This indicates that the output may fail to meet the needs of its end-users. Further, these creative PPI groups were based in certain geographical regions such as Stoke-on-Trent [ 19 ] Sheffield [ 23 ], South Wales [ 12 ] or Ireland [ 20 ], which limits the extent the findings can be applied to wider populations, even within the same area due to individual nuances. Further, the study by Galler et al. [ 16 ], is specific to the Norwegian context and even then, maybe only a sub-group of the Norwegian population as the sample used was of higher socioeconomic status.

However, Grindell et al. [ 17 ], who used persona scenarios, creative worksheets and prototype development, pointed out that the purpose of this type of research is to improve a certain place, rather than apply findings across other populations and locations. Individualised output may, therefore, only be a limitation to research wanting to conduct PPI on a large scale.

If, however, greater generalisation within PPI is deemed necessary, then social media may offer a resolution. Fedorowicz et al. [ 15 ], used Facebook to gain feedback from the public on the use of video-recording methodology for an upcoming project. This had the benefit of including a more diverse range of people (289 people joined the closed group), who were spread geographically around the UK, as well as seven people from overseas.

Creative PPI has ethical issues

As with other research, ethical issues must be taken into consideration. Due to the nature of creative approaches, as well as the personal effort put into them, people often want to be recognised for their work. However, this compromises principles so heavily instilled in research such as anonymity and confidentiality. With the aim of exploring issues related to health and well-being in a town in South Wales, Byrne et al. [ 12 ], asked year 4/5 and year 10 pupils to create poems, songs, drawings and photographs. Community members also created a performance, mainly of monologues, to explore how poverty and inequalities are dealt with. Byrne noted the risks of these arts-based approaches, that being the possibility of over-disclosure and consequent emotional distress, as well as people’s desire to be named for their work. On one hand, the anonymity reduces the sense of ownership of the output as it does not portray a particular individual’s lived experience anymore. On the other hand, however, it could promote a more honest account of lived experience. Supporting this, Webber et al. [ 23 ], who used the persona method to co-design a back pain educational resource prototype, claimed that the anonymity provided by this creative technique allowed individuals to externalise and anonymise their own personal experience, thus creating a more authentic and genuine resource for future users. This implies that anonymity can be both a limitation and strength here.

The use of creative PPI methods is impeded by external factors

Despite the above limitations influencing the implementation of creative PPI techniques, perhaps the most influential is that creative methodologies are simply not mainstream [ 19 ]. This could be linked to the issues above, like time and resource intensity, generalisation and ethical issues but it is also likely to involve more systemic factors within the research community. Micsinszki et al. [ 21 ], who co-designed a hub for the health and well-being of vulnerable populations, commented that there is insufficient infrastructure to conduct meaningful co-design as well as a dominant medical model. Through a more holistic lens, there are “sociopolitical environments that privilege individualism over collectivism, self-sufficiency over collaboration, and scientific expertise over other ways of knowing based on lived experience” [ 21 ]. This, it could be suggested, renders creative co-design methodologies, which are based on the foundations of collectivism, collaboration and imagination an invalid technique in the research field, which is heavily dominated by more scientific methods offering reproducibility, objectivity and reliability.

Although we acknowledge that creative PPI techniques are not always appropriate, it may be that their main limitation is the lack of awareness of these methods or lack of willingness to use them. Further, there is always the risk that PPI, despite being a mandatory part of research, is used in a tokenistic or tick-box fashion [ 20 ], without considering the contribution that meaningful PPI could make to enhancing the research. It may be that PPI, let alone creative PPI, is not at the forefront of researchers’ minds when planning research.

Strengths of creative PPI

Creative ppi disrupts power hierarchies.

One of the main strengths of creative PPI techniques, cited most frequently in the included literature, was that they disrupt traditional power hierarchies [ 12 , 13 , 17 , 19 , 23 ]. For example, the use of theatre performance blurred the lines between professional and lay roles between the community and policy makers [ 12 ]. Individuals created a monologue to portray how poverty and inequality impact daily life and presented this to representatives of the National Assembly of Wales, Welsh Government, the Local Authority, Arts Council and Westminster. Byrne et al. [ 12 ], states how this medium allowed the community to engage with the people who make decisions about their lives in an environment of respect and understanding, where the hierarchies are not as visible as in other settings, e.g., political surgeries. Creative PPI methods have also removed traditional power hierarchies between researchers and adolescents. Cook et al. [ 13 ], used arts-based approaches to explore adolescents’ ideas about the “perfect” condom. They utilised the “Life Happens” resource, where adolescents drew and then decorated a person with their thoughts about sexual relationships, not too dissimilar from the persona-scenario method. This was then combined with hypothetical scenarios about sexuality. A condom-mapping exercise was then implemented, where groups shared the characteristics that make a condom “perfect” on large pieces of paper. Cook et al. [ 13 ], noted that usually power imbalances make it difficult to elicit information from adolescents, however these power imbalances were reduced due to the use of creative co-design techniques.

The same reduction in power hierarchies was noted by Grindell et al. [ 17 ], who used the person-scenario method and creative worksheets with individuals with malignant pleural effusion. This was with the aim of developing a prototype of a decision support tool for patients to help with treatment options. Although this process involved a variety of stakeholders, such as patients, carers and healthcare professionals, creative co-design was cited as a mechanism that worked to reduce power imbalances – a limitation of more traditional methods of research. Creative co-design blurred boundaries between end-users and clinical staff and enabled the sharing of ideas from multiple, valuable perspectives, meaning the prototype was able to suit user needs whilst addressing clinical problems.

Similarly, a specific creative method named cultural animation was also cited to dissolve hierarchies and encourage equal contributions from participants. Within this arts-based approach, Keleman et al. [ 19 ], explored the concept of “good health” with individuals from Stoke-on Trent. Members of the group created art installations using ribbons, buttons, cardboard and straws to depict their idea of a “healthy community”, which was accompanied by a poem. They also created a 3D Facebook page and produced another poem or song addressing the government to communicate their version of a “picture of health”. Public participants said that they found the process empowering, honest, democratic, valuable and practical.

This dissolving of hierarchies and levelling of power is beneficial as it increases the sense of ownership experienced by the creators/producers of the output [ 12 , 17 , 23 ]. This is advantageous as it has been suggested to improve its quality [ 23 ].

Creative PPI allows the unsayable to be said

Creative PPI fosters a safe space for mundane or taboo topics to be shared, which may be difficult to communicate using traditional methods of PPI. For example, the hypothetical nature of condom mapping and persona-scenarios meant that adolescents could discuss a personal topic without fear of discrimination, judgement or personal disclosure [ 13 ]. The safe space allowed a greater volume of ideas to be generated amongst peers where they might not have otherwise. Similarly, Webber et al. [ 23 ], , who used the persona method to co-design the prototype back pain educational resource, also noted how this method creates anonymity whilst allowing people the opportunity to externalise personal experiences, thoughts and feelings. Other creative methods were also used, such as drawing, collaging, role play and creating mood boards. A cardboard cube (labelled a “magic box”) was used to symbolise a physical representation of their final prototype. These creative methods levelled the playing field and made personal experiences accessible in a safe, open environment that fostered trust, as well as understanding from the researchers.

It is not only sensitive subjects that were made easier to articulate through creative PPI. The communication of mundane everyday experiences were also facilitated, which were deemed typically ‘unsayable’. This was specifically given in the context of describing intangible aspects of everyday health and wellbeing [ 11 ]. Graphic designers can also be used to visually represent the outputs of creative PPI. These captured the movement and fluidity of people and well as the relationships between them - things that cannot be spoken but can be depicted [ 21 ].

Creative PPI methods are inclusive

Another strength of creative PPI was that it is inclusive and accessible [ 17 , 19 , 21 ]. The safe space it fosters, as well as the dismantling of hierarchies, welcomed people from a diverse range of backgrounds and provided equal opportunities [ 21 ], especially for those with communication and memory difficulties who might be otherwise excluded from PPI. Kelemen et al. [ 19 ], who used creative methods to explore health and well-being in Stoke-on-Trent, discussed how people from different backgrounds came together and connected, discussed and reached a consensus over a topic which evoked strong emotions, that they all have in common. Individuals said that the techniques used “sets people to open up as they are not overwhelmed by words”. Similarly, creative activities, such as the persona method, have been stated to allow people to express themselves in an inclusive environment using a common language. Kearns et al. [ 18 ], who used aphasia-accessible material to develop a questionnaire with aphasic individuals, described how they felt comfortable in contributing to workshops (although this material was time-consuming to make, see ‘Limitations of creative PPI’ ).

Despite the general inclusivity of creative PPI, it can also be exclusive, particularly if online mediums are used. Fedorowicz et al. [ 15 ], used Facebook to create a PPI group, and although this may rectify previous drawbacks about lack of generalisation of creative methods (as Facebook can reach a greater number of people, globally), it excluded those who are not digitally active or have limited internet access or knowledge of technology. Online methods have other issues too. Maintaining the online group was cited as challenging and the volume of responses required researchers to interact outside of their working hours. Despite this, online methods like Facebook are very accessible for people who are physically disabled.

Creative PPI methods are engaging

The process of creative PPI is typically more engaging and produces more colourful data than traditional methods [ 13 ]. Individuals are permitted and encouraged to explore a creative self [ 19 ], which can lead to the exploration of new ideas and an overall increased enjoyment of the process. This increased engagement is particularly beneficial for younger PPI groups. For example, to involve children in the development of health food products, Galler et al. [ 16 ] asked 9-12-year-olds to take photos of their food and present it to other children in a “show and tell” fashion. They then created a newspaper article describing a new healthy snack. In this creative focus group, children were given lab coats to further their identity as inventors. Galler et al. [ 16 ], notes that the methods were highly engaging and facilitated teamwork and group learning. This collaborative nature of problem-solving was also observed in adults who used personas and creative worksheets to develop the resource for lower back pain [ 23 ]. Dementia patients too have been reported to enjoy the creative and informal approach to idea generation [ 20 ].

The use of cultural animation allowed people to connect with each other in a way that traditional methods do not [ 19 , 21 ]. These connections were held in place by boundary objects, such as ribbons, buttons, fabric and picture frames, which symbolised a shared meaning between people and an exchange of knowledge and emotion. Asking groups to create an art installation using these objects further fostered teamwork and collaboration, both at an individual and collective level. The exploration of a creative self increased energy levels and encouraged productive discussions and problem-solving [ 19 ]. Objects also encouraged a solution-focused approach and permitted people to think beyond their usual everyday scope [ 17 ]. They also allowed facilitators to probe deeper about the greater meanings carried by the object, which acted as a metaphor [ 21 ].

From the researcher’s point of view, co-creative methods gave rise to ideas they might not have initially considered. Valaitis et al. [ 22 ], found that over 40% of the creative outputs were novel ideas brought to light by patients, healthcare providers/community care providers, community service providers and volunteers. One researcher commented, “It [the creative methods] took me on a journey, in a way that when we do other pieces of research it can feel disconnected” [ 23 ]. Another researcher also stated they could not return to the way they used to do research, as they have learnt so much about their own health and community and how they are perceived [ 19 ]. This demonstrates that creative processes not only benefit the project outcomes and the PPI group, but also facilitators and researchers. However, although engaging, creative methods have been criticised for not demonstrating academic rigour [ 17 ]. Moreover, creative PPI may also be exclusive to people who do not like or enjoy creative activities.

Creative PPI methods are cost and time efficient

Creative PPI workshops can often produce output that is visible and tangible. This can save time and money in the long run as the output is either ready to be implemented in a healthcare setting or a first iteration has already been developed. This may also offset the time and costs it takes to implement creative PPI. For example, the prototype of the decision support tool for people with malignant pleural effusion was developed using personas and creative worksheets. The end result was two tangible prototypes to drive the initial idea forward as something to be used in practice [ 17 ]. The use of creative co-design in this case saved clinician time as well as the time it would take to develop this product without the help of its end-users. In the development of this particular prototype, analysis was iterative and informed the next stage of development, which again saved time. The same applies for the feedback questionnaire for the assessment of ICT delivered aphasia rehabilitation. The co-created questionnaire, designed with people with aphasia, was ready to be used in practice [ 18 ]. This suggests that to overcome time and resource barriers to creative PPI, researchers should aim for it to be engaging whilst also producing output.

That useable products are generated during creative workshops signals to participating patients and public members that they have been listened to and their thoughts and opinions acted upon [ 23 ]. For example, the development of the back pain resource based on patient experiences implies that their suggestions were valid and valuable. Further, those who participated in the cultural animation workshop reported that the process visualises change, and that it already feels as though the process of change has started [ 19 ].

The most cost and time efficient method of creative PPI in this review is most likely the use of Facebook to gather feedback on project methodology [ 15 ]. Although there were drawbacks to this, researchers could involve more people from a range of geographical areas at little to no cost. Feedback was instantaneous and no training was required. From the perspective of the PPI group, they could interact however much or little they wish with no time commitment.

This systematic review identified four limitations and five strengths to the use of creative PPI in health and social care research. Creative PPI is time and resource intensive, can raise ethical issues and lacks generalisability. It is also not accepted by the mainstream. These factors may act as barriers to the implementation of creative PPI. However, creative PPI disrupts traditional power hierarchies and creates a safe space for taboo or mundane topics. It is also engaging, inclusive and can be time and cost efficient in the long term.

Something that became apparent during data analysis was that these are not blanket strengths and limitations of creative PPI as a whole. The umbrella term ‘creative PPI’ is broad and encapsulates a wide range of activities, ranging from music and poems to prototype development and persona-scenarios, to more simplistic things like the use of sticky notes and ordering cards. Many different activities can be deemed ‘creative’ and the strengths and limitations of one does not necessarily apply to another. For example, cultural animation takes greater effort to prepare than the use of sticky notes and sorting cards, and the use of Facebook is cheaper and wider reaching than persona development. Researchers should use their discretion and weigh up the benefits and drawbacks of each method to decide on a technique which suits the project. What might be a limitation to creative PPI in one project may not be in another. In some cases, creative PPI may not be suitable at all.

Furthermore, the choice of creative PPI method also depends on the needs and characteristics of the PPI group. Children, adults and people living with dementia or language difficulties all have different engagement needs and capabilities. This indicates that creative PPI is not one size fits all and that the most appropriate method will change depending on the composition of the group. The choice of method will also be determined by the constraints of the research project, namely time, money and the research aim. For example, if there are time constraints, then a method which yields a lot of data and requires a lot of preparation may not be appropriate. If generalisation is important, then an online method is more suitable. Together this indicates that the choice of creative PPI method is highly individualised and dependent on multiple factors.

Although the limitations discussed in this review apply to creative PPI, they are not exclusive to creative PPI. Ethical issues are a consideration within general PPI research, especially when working with more vulnerable populations, such as children or adults living with a disability. It can also be the case that traditional PPI methods lack generalisability, as people who volunteer to be part of such a group are more likely be older, middle class and retired [ 24 ]. Most research is vulnerable to this type of bias, however, it is worth noting that generalisation is not always a goal and research remains valid and meaningful in its absence. Although online methods may somewhat combat issues related to generalisability, these methods still exclude people who do not have access to the internet/technology or who choose not to use it, implying that online PPI methods may not be wholly representative of the general population. Saying this, however, the accessibility of creative PPI techniques differs from person to person, and for some, online mediums may be more accessible (for example for those with a physical disability), and for others, this might be face-to-face. To combat this, a range of methods should be implemented. Planning multiple focus group and interviews for traditional PPI is also time and resource intensive, however the extra resources required to make this creative may be even greater. Although, the rich data provided may be worth the preparation and analysis time, which is also likely to depend on the number of participants and workshop sessions required. PPI, not just creative PPI, often requires the provision of a financial incentive, refreshments, parking and accommodation, which increase costs. These, however, are imperative and non-negotiable, as they increase the accessibility of research, especially to minority and lower-income groups less likely to participate. Adequate funding is also important for co-design studies where repeated engagement is required. One barrier to implementation, which appears to be exclusive to creative methods, however, is that creative methods are not mainstream. This cannot be said for traditional PPI as this is often a mandatory part of research applications.

Regarding the strengths of creative PPI, it could be argued that most appear to be exclusive to creative methodologies. These are inclusive by nature as multiple approaches can be taken to evoke ideas from different populations - approaches that do not necessarily rely on verbal or written communication like interviews and focus groups do. Given the anonymity provided by some creative methods, such as personas, people may be more likely to discuss their personal experiences under the guise of a general end-user, which might be more difficult to maintain when an interviewer is asking an individual questions directly. Additionally, creative methods are by nature more engaging and interactive than traditional methods, although this is a blanket statement and there may be people who find the question-and-answer/group discussion format more engaging. Creative methods have also been cited to eliminate power imbalances which exist in traditional research [ 12 , 13 , 17 , 19 , 23 ]. These imbalances exist between researchers and policy makers and adolescents, adults and the community. Lastly, although this may occur to a greater extent in creative methods like prototype development, it could be suggested that PPI in general – regardless of whether it is creative - is more time and cost efficient in the long-term than not using any PPI to guide or refine the research process. It must be noted that these are observations based on the literature. To be certain these differences exist between creative and traditional methods of PPI, direct empirical evaluation of both should be conducted.

To the best of our knowledge, this is the first review to identify the strengths and limitations to creative PPI, however, similar literature has identified barriers and facilitators to PPI in general. In the context of clinical trials, recruitment difficulties were cited as a barrier, as well as finding public contributors who were free during work/school hours. Trial managers reported finding group dynamics difficult to manage and the academic environment also made some public contributors feel nervous and lacking confidence to speak. Facilitators, however, included the shared ownership of the research – something that has been identified in the current review too. In addition, planning and the provision of knowledge, information and communication were also identified as facilitators [ 25 ]. Other research on the barriers to meaningful PPI in trial oversight committees included trialist confusion or scepticism over the PPI role and the difficulties in finding PPI members who had a basic understanding of research [ 26 ]. However, it could be argued that this is not representative of the average patient or public member. The formality of oversight meetings and the technical language used also acted as a barrier, which may imply that the informal nature of creative methods and its lack of dependency on literacy skills could overcome this. Further, a review of 42 reviews on PPI in health and social care identified financial compensation, resources, training and general support as necessary to conduct PPI, much like in the current review where the resource intensiveness of creative PPI was identified as a limitation. However, others were identified too, such as recruitment and representativeness of public contributors [ 27 ]. Like in the current review, power imbalances were also noted, however this was included as both a barrier and facilitator. Collaboration seemed to diminish hierarchies but not always, as sometimes these imbalances remained between public contributors and healthcare staff, described as a ‘them and us’ culture [ 27 ]. Although these studies compliment the findings of the current review, a direct comparison cannot be made as they do not concern creative methods. However, it does suggest that some strengths and weaknesses are shared between creative and traditional methods of PPI.

Strengths and limitations of this review

Although a general definition of creative PPI exists, it was up to our discretion to decide exactly which activities were deemed as such for this review. For example, we included sorting cards, the use of interactive whiteboards and sticky notes. Other researchers may have a more or less stringent criteria. However, two reviewers were involved in this decision which aids the reliability of the included articles. Further, it may be that some of the strengths and limitations cannot fully be attributed to the creative nature of the PPI process, but rather their co-created nature, however this is hard to disentangle as the included papers involved both these aspects.

During screening, it was difficult to decide whether the article was utilising creative qualitative methodology or creative PPI , as it was often not explicitly labelled as such. Regardless, both approaches involved the public/patients refining a healthcare product/service. This implies that if this review were to be replicated, others may do it differently. This may call for greater standardisation in the reporting of the public’s involvement in research. For example, the NIHR outlines different approaches to PPI, namely “consultation”, “collaboration”, “co-production” and “user-controlled”, which each signify an increased level of public power and influence [ 28 ]. Papers with elements of PPI could use these labels to clarify the extent of public involvement, or even explicitly state that there was no PPI. Further, given our decision to include only scholarly peer-reviewed literature, it is possible that data were missed within the grey literature. Similarly, the literature search will not have identified all papers relating to different types of accessible inclusion. However, the intent of the review was to focus solely on those within the definition of creative.

This review fills a gap in the literature and helps circulate and promote the concept of creative PPI. Each stage of this review, namely screening and quality appraisal, was conducted by two independent reviewers. However, four full texts could not be accessed during the full text reading stage, meaning there are missing data that could have altered or contributed to the findings of this review.

Research recommendations

Given that creative PPI can require effort to prepare, perform and analyse, sufficient time and funding should be allocated in the research protocol to enable meaningful and continuous PPI. This is worthwhile as PPI can significantly change the research output so that it aligns closely with the needs of the group it is to benefit. Researchers should also consider prototype development as a creative PPI activity as this might reduce future time/resource constraints. Shifting from a top-down approach within research to a bottom-up can be advantageous to all stakeholders and can help move creative PPI towards the mainstream. This, however, is the collective responsibility of funding bodies, universities and researchers, as well as committees who approve research bids.

A few of the included studies used creative techniques alongside traditional methods, such as interviews, which could also be used as a hybrid method of PPI, perhaps by researchers who are unfamiliar with creative techniques or to those who wish to reap the benefits of both. Often the characteristics of the PPI group were not included, including age, gender and ethnicity. It would be useful to include such information to assess how representative the PPI group is of the population of interest.

Creative PPI is a relatively novel approach of engaging the public and patients in research and it has both advantages and disadvantages compared to more traditional methods. There are many approaches to implementing creative PPI and the choice of technique will be unique to each piece of research and is reliant on several factors. These include the age and ability of the PPI group as well as the resource limitations of the project. Each method has benefits and drawbacks, which should be considered at the protocol-writing stage. However, given adequate funding, time and planning, creative PPI is a worthwhile and engaging method of generating ideas with end-users of research – ideas which may not be otherwise generated using traditional methods.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Critical Appraisal Skills Programme

The Joanna Briggs Institute

National Institute of Health and Care Research

Public Advisory Group

Public and Patient Involvement

Web of Science

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Acknowledgements

With thanks to the PHIRST-LIGHT public advisory group and consortium for their thoughts and contributions to the design of this work.

The research team is supported by a National Institute for Health and Care Research grant (PHIRST-LIGHT Reference NIHR 135190).

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Olivia R. Phillips and Cerian Harries share joint first authorship.

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Nottingham Centre for Public Health and Epidemiology, Lifespan and Population Health, School of Medicine, University of Nottingham, Clinical Sciences Building, City Hospital Campus, Hucknall Road, Nottingham, NG5 1PB, UK

Olivia R. Phillips, Jo Leonardi-Bee, Holly Knight & Joanne R. Morling

National Institute for Health and Care Research (NIHR) PHIRST-LIGHT, Nottingham, UK

Olivia R. Phillips, Cerian Harries, Jo Leonardi-Bee, Holly Knight, Lauren B. Sherar, Veronica Varela-Mato & Joanne R. Morling

School of Sport, Exercise and Health Sciences, Loughborough University, Epinal Way, Loughborough, Leicestershire, LE11 3TU, UK

Cerian Harries, Lauren B. Sherar & Veronica Varela-Mato

Nottingham Centre for Evidence Based Healthcare, School of Medicine, University of Nottingham, Nottingham, UK

Jo Leonardi-Bee

NIHR Nottingham Biomedical Research Centre (BRC), Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, NG7 2UH, UK

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Author contributions: study design: ORP, CH, JRM, JLB, HK, LBS, VVM, literature searching and screening: ORP, CH, JRM, data curation: ORP, CH, analysis: ORP, CH, JRM, manuscript draft: ORP, CH, JRM, Plain English Summary: ORP, manuscript critical review and editing: ORP, CH, JRM, JLB, HK, LBS, VVM.

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Phillips, O.R., Harries, C., Leonardi-Bee, J. et al. What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review. Res Involv Engagem 10 , 48 (2024). https://doi.org/10.1186/s40900-024-00580-4

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What is Qualitative in Qualitative Research

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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.

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What is Qualitative in Research

Unsettling definitions of qualitative research, what is “qualitative” in qualitative research why the answer does not matter but the question is important.

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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.

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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.

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Review article, hope as experienced by people with acquired brain injury in a rehabilitation—or recovery process: a qualitative systematic review and thematic synthesis.

• 1 Neurorehabilitation Copenhagen, Municipality of Copenhagen, Copenhagen, Denmark
• 2 Department of Communication and Psychology, Aalborg University, Aalborg, Denmark

Background: There has been an increasing interest in the concept of hope within the field of brain injury rehabilitation. Existing reviews have nevertheless focused on stroke, leaving out the broad population of people with acquired brain injury (ABI). Furthermore a majority of the included studies in those reviews excluded the subgroup of people with communication difficulties, thus primarily giving voice to a select group of people with ABI.

Methods: A qualitative systematic review was conducted with the purpose of systematically reviewing and thematically synthesise findings about hope as experienced by adults with ABI in a rehabilitation or recovery process. The search strategy included peer-reviewed qualitative studies published after 2000 in English or Scandinavian languages. Searches of EBSCO databases incorporating CINAHL, MEDLINE, and PsycINFO were conducted together with SocINDEX, Social Work Abstracts, Eric and Web of Science. Ten qualitative studies were included, and the Critical Appraisal Skills Program (CASP) was used for assessing the quality and relevance of the ten studies. Qualitative findings were synthesized using Thomas and Harden's methodology.

Results: Through a thematic synthesis eleven subthemes were identified relating to experiences of hope. These were grouped into four analytical themes: (1) hope a two folded phenomenon; (2) time and temporality; (3) progress, goals and visibility and (4) the alliance; a balancing act requiring good communication skills.

Conclusion: This review has shown that even though hope has both a positive and negative side to it, it is necessary as a driving force for people with ABI in terms of supporting them to keep going and not give up. Rehabilitation professionals are advised to embrace the ambiguity of hope, customizing the support of hope to each person with ABI. Attention is needed on how to make progress visible for persons with ABI during their rehabilitation process just as rehabilitation professionals should acknowledge the alliance with the person with ABI as a core component of rehabilitation. This requires a focus on professionals' communication skills if hope promoting relationships between professionals and persons with ABI are to be achieved.

1 Introduction

When thinking of hope, one might come across stories of the nurse Florence Nightingale, also called “the Lady with the Lamp”. Florence Nightingale is particularly known for walking through the infirmaries at night with a lamp in her hand—tending to the wounded, often with a comforting word on her lips. It is therefore often referenced that Florence Nightingale walked the dark corridors and spread hope and light to the patients ( 1 ).

Since the 1950s, the concept of hope has gained relevance across disciplines and research cultures such as positive psychology, psychiatry, and nursing research ( 2 – 4 ). Many researchers have depicted the meaning of hope to human beings and described hope in numerous ways ( 5 – 8 ). However, researchers across disciplines agree that hope is both universal and specific (concrete) ( 5 , 8 , 9 ). Universal hope, according to Hammer, can be described as “a general belief in the future and a safeguard for human being by illuminating life itself”, whereas specific hope is described by Hammer as “connected to time and object” ( 8 ). Snyder et al. ( 10 ) have worked on a definition of hope (within rehabilitation) where hope is described as a goal-directed cognitive motivational process focused on the importance of particularized hope and goals ( 10 ). In contrast, research on hope within the field of chronic illness is defined and described differently. The researcher Barnard for instance says: “hoping is a posture, not a motive for achievement of a particular goal. It is a mode of experiencing oneself in relation to reality and time” ( 11 ).

Earlier studies often focused on hopelessness rather than hope, especially for persons with mental illness. But as researchers began to expand their horizons, they ended up exploring the construct of hope across diverse illness contexts, including the chronically ill, critically ill and terminally ill ( 9 ). Later, also research within vulnerable groups such as people with dual diagnosis have been explored as to how hope is experienced by people with co-occurring mental health and substance use problems ( 12 – 14 ), just as hope within the population of patients with spinal cord injury has been explored in recent years ( 15 – 19 ). Hope is therefore a well-known theme in relation to serious illness and disability. Many anthropological and sociological studies have emphasized the despair that can follow chronic and serious conditions ( 20 – 25 ), often connected with lack of hope or the struggle for hope ( 26 ).

1.1 Hope and acquired brain injury

When a person acquires a brain injury, something happens not only to the brain and body, but also the anticipated future. Experiencing an ABI can thus be conceptualized as a “critical event” that disrupts the structure of everyday life, The sociologist Bury refers to this event as a form of biographical disruption ( 23 ). In other words, an unexpected interruption of an otherwise expected normal course of life.

An acquired brain injury may be caused by stroke, hemorrhages in the brain other than stroke, trauma, tumors (benign and malignant), infections, poisoning, lack of oxygen (e.g., by drowning accidents and cardiac arrest with successful resuscitation) etc. ( 27 ). The consequences of brain injury can be physical, cognitive, psychological, linguistic, and communicative and often have a major impact on a person's life and identity According to Cantor et al., persons with ABI live with two images of the self: “Who I am now” and “Who I was before” ( 28 ). This identity reconstruction process is a dynamic process of contraction and expansion in which the person with ABI strikes a tentative balance between new and old selves. This process might call for professional support to revise self-narratives and to validate the loss of some identities (e.g., working identity) ( 29 ).

The rehabilitation of people with acquired brain injury strives for a holistic approach, where the bio-psycho-social model forms the basis for all rehabilitation ( 30 , 31 ). However, Danish research within brain injury rehabilitation has shown that rehabilitation continues to mostly focus on the rehabilitation of practical functions in everyday life (Activities of Daily Living), physical functions and vocational rehabilitation ( 29 , 32 , 33 ). Thus, rehabilitation is primarily aimed at physical and functional rehabilitation, and not a holistic focus where the person's existential and emotional situation is also considered. Within a bio-psycho-social rehabilitation framework, there has been an increasing interest in the concept of hope. Having a hopeful stance and being able to identify possible pathways into a meaningful future is essential in times of uncertainty and despair.

Nochi ( 34 ) found that hope of recovery was used as a strategy by persons who had sustained a traumatic brain injury to reduce this experience of “loss of self”. Kuipers and colleagues ( 35 ), have identified a need for clinically relevant research on hope, which can guide practitioners in fostering hope to enhance the experiences and outcomes for persons with ABI and their family members ( 35 ).

1.1.1 Reviews on hope and stroke

In 2011, Bright and colleagues conducted a systematic review on hope after stroke ( 36 ). Nineteen articles were included, but only seven of these articles sought to explore hope ( 37 – 43 ). For the remaining 12 articles, hope was a key finding that was present when related topics such as recovery or quality of life were explored ( 36 ). Bright et al.'s review revealed that hope was complex and multidimensional. Moreover, hope was influenced by internal and external sources and had a positive impact on recovery following stroke. Their proposed conceptualization identified three attributes of hope: (1) an inner state, (2) outcome orientation, and (3) an active process ( 2 , 36 ).

Soundy and colleagues published two reviews in 2014 ( 44 , 45 ). The first being a narrative review focusing on factors promoting or hindering hope in persons with stroke or spinal cord injury. Moreover, it focused on identifying how (health) professionals could support the promotion of hope during rehabilitation ( 44 ). The second review proposed a framework for hope, arguing for a more generalized view of understanding why a certain hope exists or is identified by a patient ( 45 ).

Whereas Bright et al. included nineteen studies in their review, Soundy et al. ended up including ten studies. A total of four studies overlapped and were thus included in both reviews ( 37 , 38 , 43 , 46 ). The above-mentioned reviews have contributed both in enhancing our understanding of hope. However, we still do not know much about the role of hope in persons following an ABI as both research teams only focused on people with stroke. Furthermore, more than half of the included studies in the three reviews either completely excluded persons with communication difficulties or only included persons if they didn't have pronounced communication difficulties. As a result, we know even less about experiences of hope when it comes to persons with communication difficulties ( 47 ).

Therefore, the purpose of this review is to capture the phenomenon of hope as experienced by the broad population of persons with ABI. Through a systematic search in relevant databases and a thematic synthesis, we aim to expand our understanding of hope as experienced and described by persons with acquired brain injury during a rehabilitation or recovery process. This knowledge can inform rehabilitation theory and practice further.

1.1.2 Review question

The specific question guiding this review is: “How is hope (as a phenomenon) experienced in the rehabilitation or recovery process of persons with acquired brain injury”? The qualitative PICo worksheet adapted from Miller, S.A. (2001) was used as a framework for building the search strategy 1 ( 48 ). The different search terms for each of the three blocks in PICo are presented in Table 1 .

Table 1 . PICo describing database search strategy.

A qualitative systematic literature review was conducted, and the approach and reporting were guided by the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement ( 49 ) and the PRISMA statement ( 50 ). To answer the research question, study results were synthesized, applying a thematic synthesis, as described by Thomas and Harden ( 51 ).

The research team conducting the search, screening and final inclusions of studies consist of the two authors (CHN and CG). The first author has several years of clinical experience within the field of ABI rehabilitation. The second author has done research within the field of ABI rehabilitation for more than 10 years and also holds clinical rehabilitation experience. Having a phenomenological standpoint, the authors are interested in exploring the lived experience of hope, thereby looking at hope from a first person perspective (persons with ABI).

2.1 Search strategy

A “subject-based strategy” was chosen since the approach has been shown to be more effective than the alternative (“research methodology-based strategy”) in retrieving qualitative patient-reported health-related quality of life research ( 52 ).

To develop relevant keywords (synonyms, near synonyms, broader and narrower concepts), pilot searches in selected databases were conducted ( 52 , 53 ). The search was initially conducted in December 2021 with a follow up search in January 2023 (see Supplementary Appendices S1, S2 for search protocols) to ensure that any new studies meeting the inclusion criteria were included. However, no relevant studies were identified in this new search. The literature search included English and Scandinavian peer-reviewed articles published between 2000 and 2023.

In the attempt to find relevant studies in journals across different subjects—and research areas—a thorough and extensive search of seven databases was performed ( 53 ). To secure high recall without compromising precision, the following terms were included for block two about the phenomenon: “hope”, “hopeful”, “hopefulness”, “meaning making (process)”, “optimism”, “wish”, “wishful thinking” (see Supplementary Appendix S1 for the search in its entirety). Both “rehabilitation” and “recovery” were used as search terms for block three, as we wanted to include studies performed in an inpatient, as well as in an outpatient setting. Recovery is often linked to hope, thus a relevant term to include. The search terms and keywords were modified with input from an experienced librarian. Searches of EBSCO databases incorporating CINAHL, MEDLINE, and PsycINFO were undertaken together with SocINDEX, Social Work Abstracts, Eric and Web of Science (for further considerations on the choice of databases and the final search strategy see Supplementary Appendix S2 ). Any relevant protocol papers or conference abstracts identified from the database searches were followed up. A manual search of reference lists of relevant studies was also performed to complement the database search ( 53 , 54 ).

2.1.1 Study selection

Search results from the seven databases were combined in the bibliographic software RefWorks and duplicates removed. The primary aim was to identify studies exploring the perspective of persons with ABI, where the phenomenon of interest was hope. From initial pilot searches, it quickly became clear that the inclusion criteria had to be adjusted if the review was to include more than five or six studies. Thus, inclusion criteria were revised so that studies were included if they had hope as a substantial part of their findings even if hope had not been the initial focus of the study. Although this final search strategy also generated a significant number of irrelevant hits, it was seen as a necessary process to ensure that appropriate literature was captured.

2.1.2 Eligibility criteria

The inclusion and exclusion criteria shown in Table 2 were used to determine eligible papers for study inclusion.

Table 2 . Inclusion and exclusion criteria for study selection.

The selection of studies followed a two-stage process of screening and final selection. In order to ensure, systematicity and transparency the software Covidence was used in this process. Stage 1 (Screening): Titles and abstracts were screened against the inclusion and exclusion criteria and items deemed ineligible were removed. Stage 2 (Final selection): When articles appeared possibly to fit the inclusion criteria, full text copies of the articles were obtained. If it was not possible to determine the relevance by the title or abstract, a full text was also obtained to confirm or deny eligibility for inclusion ( 55 ). Full-text articles were then screened to ensure they met the inclusion and exclusion criteria and were relevant to the research question. Moreover, reference lists of the included studies were screened for further relevant studies.

2.1.3 Quality assessment

After having completed full-text readings of the final studies, the Critical Appraisal Skills Program (CASP), a checklist for qualitative research, was used for the evaluation of the ten studies. The CASP toolkit consists of 10 questions to facilitate rapid evaluation ( 56 ). All articles were determined to be of good quality and although some studies were small scale studies, they could potentially be a of valuable contribution to understanding the experience of hope. Full details of the CASP quality appraisal are provided in Table 3 .

Table 3 . CASP quality appraisal for all ten articles.

2.1.4 Data extraction and synthesis methodology

The included studies were categorized according to their primary focus. For each study, the following data were obtained and put into the result table: Author & year, aim (of study), time since injury, sample (size, sex, and population), methods (e.g., type of qualitative study), data analysis and results.

To syntizese findings, the thematic synthesis methodology developed by Thomas and Harden was used ( 51 ). The approach outlines a three-step process to guide the thematic synthesis. It involves (1) close reading of text to identify data-driven patterns that become “categories for analysis” ( 67 ). (2) Next, codes are developed inductively using the results sections from the first article and transfere these to the succeeding articles after which new codes are added. Based on this process, authors then develop descriptive themes representative of groups of identified codes, that align closely to the literature being synthesized. The last step of the process is where (3) authors develop analytical themes which require them to apply their own interpretation of article findings ( 51 ). Both authors ( 51 ) read the articles multiple times. The initial reading was performed to develop an understanding of the topic and to get an overview on how each study met the purpose of this review. First author did the initial coding and extracted information about hope in the article findings, leaving out sections/themes that did not deal with this topic. Afterwards both authors discussed all the initial codes. Finally the first author established broader descriptive themes based on codes and with confirmed consistency of the ascribed text. Descriptive themes were put into a matrix and organized into analytical themes which were discussed by the authors to ensure agreement.

Figure 1 provides the results of the database search in total within a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA 2020) flow diagram ( 50 ). A total of 4,722 abstracts were identified. After the removal of duplicate records and records marked as ineligible by automation tools, 1,239 abstracts were left. Following review of titles and abstracts, 40 publications were identified for potential inclusion. The full texts of these were read and assessed for eligibility.

Figure 1 . Prisma flow diagram.

Of the 40 studies retrieved for full text reading, only nine studies met the inclusion criteria. Hand-searching of the included articles' reference lists was also employed, where 29 studies were retrieved for full text reading, but only one additional study was identified which made a total of ten. The characteristics of these ten studies are presented in Table 4 .

Table 4 . Characteristics of included studies.

3.1 Characteristics of the included studies

As shown in Table 4 , half of the studies were carried out in the UK, Norway and Sweden ( 57 , 58 , 62 , 65 , 66 ) two in New Zealand ( 60 , 61 ), and the rest in the USA ( 64 ), Australia ( 59 ), and Malaysia ( 63 ). The numbers of participants across studies varied considerably from three ( 64 ) to 33 participants ( 57 ). The age of the persons with ABI varied from 21 to 88 years old.

Six of the studies ( 59 – 62 , 64 , 65 ) used semi-structured or in-depth interviews to collect data whereas four of the studies collected data through a wider range of ethnographic approaches ( 57 , 58 , 63 , 66 ) such as observations, diary entries, and video recordings. While eight of the studies focused on the experience of the person with an ABI, two examined the perspective of both the person with the ABI and of the professionals ( 58 , 66 ). In these cases, only the persons with acquired brain injury's experiences of hope were included. All ten studies tended to include both female and male participants, but with a preponderance of male participants (46 females and 87 males).

The ten included studies in this review support the claim that most research on the phenomenon of hope has been conducted within the stroke population. Eight studies had persons with stroke as their population of interest, leaving only two on ABI as a broad population, including both people with stroke and traumatic brain injuries etc. ( 58 , 59 ). A total of four studies focused specifically on persons with stroke and aphasia ( 60 – 62 , 64 ).

Most studies were performed in the post-acute to chronic phase. Across studies, time since injury ranged from 2 months to 57 years. Bellon et al. and Antelius focused on the chronic phase with Bellon having participants ranging from one to 57 years since injury (median age of 14 years) ( 59 ), and Antelius exploring the understanding of hope through fieldwork in the context of a daily activity center rather than a rehabilitation center ( 58 ). On the other hand, Bright et al. ( 60 ) and Tutton et al. ( 66 ) focused on the post-acute phase, namely outpatient community-based rehabilitation at two to four months after injury at a regional acute stroke unit.

The qualitative studies revealed hope to be a very fluid and paradoxical notion. However, at the same time also something of great importance for the persons' rehabilitation or recovery process. This will be unfolded in the thematic synthesis of findings.

3.2 Thematic synthesis

Four analytical themes and eleven sub-themes were identified in the thematic synthesis and are shown in Table 5 . Only two out of ten studies included persons with ABI (e.g., stroke and TBI etc.) thereby having a primary interest in the broad population of people with ABI. In all four analytical themes, studies with participants with TBI as well as participants with stroke are represented. Thus, themes were identified across the broad ABI population. The four analytical themes being: (1) hope a two folded phenomenon; (2) time and temporality; (3) progress, goals, and visibility; and (4) the alliance; a balancing act requiring good communication skills. The themes are described in the following section and selected quotations from the reviewed studies are used to support the analysis.

Table 5 . The four analytical themes and sub-themes, with examples of quotes.

3.2.1 Theme 1: hope a two folded phenomenon

Hope turned out to be a very paradoxical phenomenon in which both a positive and negative side was embedded. Two sub-themes were identified in hope as a phenomenon.

3.2.1.1 Sub-theme: hope as a driving force

Four of the studies identified hope as having a protective effect, supporting persons with ABI to continue and not give up ( 59 , 60 , 65 , 66 ). Taule et al. went so far as to describe hope as the most important driving force in the person's struggle to make their situation comprehensible and worthwhile ( 65 ). According to Tutton et al., there was a real contrast between persons with stroke who were highly motivated and determined and for whom hope came easily, and those that felt low, lacking motivation or “flat with dense weakness and apparently had no hope” ( 66 ). As described by one of the participants with ABI in the study by Bellon: “I think if you haven’t got hope … you might as well die, yep” ( 59 ).

Two of the studies identified the fact that hope became something that allowed persons with ABI to have a positive mindset ( 59 , 63 ). Through interviews, Mairami et al. identified that hope could originate either from within the person or from those around them, fostering optimism for a functional life ( 63 ). Factors identified by Bellon et al. as “drivers” for maintaining or increasing hope were, among other things:

• support

• having something to look forward to

• mental health ( 59 ).

For people with communication difficulties such as aphasia, the most common source of hope was social relations (other people) as well as spiritual beliefs ( 60 ). The meaning of faith and spiritual experiences was also mentioned in other studies. Mairami found that some people who were not spiritual or religious before the stroke turned to faith after their injury. This faith provided them with solace and hope for recovery ( 63 ). Similarly, persons with ABI in the study by Bellon et al. felt that faith was an important factor influencing hope: “I have faith and that gives me hope” ( 59 ).

3.2.1.2 Sub-theme: hope as a source of despair

A connection between unfulfilled hopes and despair or emotional distress was identified in several studies, making it the flip side of hope ( 57 , 59 , 60 , 65 , 66 ). Persons with stroke experienced how hope could become a source of distress when it was connected to thoughts about the future ( 57 ). For persons with aphasia, hope was generally experienced as a good thing, but at the same time also difficult, since it could go unfulfilled ( 60 ). Uncertainty combined with thoughts about the future and having to redefine it, seemed to make persons with stroke vulnerable to feelings of distress and despair. Also, if the person had previous experiences of things gone wrong, they could be afraid that this would happen again and thus afraid to hope: “You can hope for lots of stuff but then half the time it's going to disappear” ( 60 ).

In the study by Bellon et al. some of the persons with ABI said that it could be difficult to gain hope and that hope was not always there:

“I guess I put hope in the same place I put happiness. Because … you’re always wanting to achieve it, or you’re always wanting to be in that state, but is that a realistic possibility? I don’t know” ( 59 ).

In a similar vain, one study described feelings of despair that could undermine hope and risk individuals falling into depression ( 66 ). Taken as a whole, the results indicate that hope is a multifaceted concept which can also have a negative side.

3.2.2 Theme 2: time and temporality

Three of the studies included in this review illuminated the temporality connected to hope and hoping ( 58 , 60 , 61 ). Three sub-themes were identified in relation to this analytical theme.

3.2.2.1 Sub-theme: living one day at a time

A present form of hope was identified as being dominant in people with stroke and aphasia. “Living in the moment” or “living one day at a time” was for many a response to the uncertainty inherent in thinking of the future—in effect, a way not to think about the future and to deal with the vulnerability that surfaced ( 60 ). In another study looking at how people with aphasia experienced hope one year post stroke and how it may have changed in that year ( 61 ), it was illustrated that the sense of hope was entwined with persons' views of their past and their present. Their perception of their poststroke recovery, well-being and view of the future was crucial in fostering—or threatening—their sense of hope for the future. Interestingly, Bright et al.'s study from 2020 suggested that the reference point for past comparisons shifted over time: in the post-acute phase, the comparisons were with their pre-stroke experience, whereas in the chronic phase they were with their immediate post-stroke experience ( 61 ). This could be seen as representing a process in which the persons revisited their hopes for the future and adjusted these based on their sense of what was possible and desirable: “I don’t believe hope can be the same [over time] as you [are not] the same” ( 61 ).

Bright et al. considered this movement in time to reflect the individual's desire, readiness, and capacity to move forward in life, actively constructing a future that they found both meaningful and imaginable ( 61 ).

3.2.2.2 Sub-theme: a fixed future in later stages of the rehabilitation process

The concept of time and temporality was amplified when people were in later stages of their rehabilitation or recovery process, especially regarding the present. In a study in persons with severe brain injuries at a day center in Sweden, the future of the persons (in this stage of rehabilitation) was characterized as less open and limited in possibilities ( 58 ). In the quote below, a young seemed to have a less positive view of impressionable possibilities:

Interviewer (I): “If you hadn’t been in that car accident, what do you think would have happened then”?

Paul (P): “Chef. Chef”.

I: “Chef? Right, you were going to train to be a chef”?

P: “I was”

I: “You were in chef training? [P nods.] In high school”?

P: “KOMVUX” [municipal adult education].

I: “Do you still want to be that?”

P: “Aa”

I: “Do you think it's possible”?

P: “No” ( 58 ).

To him the horizon seemed rather distant as the future did not hold the possibility of becoming a chef again ( 58 ).

Persons with ABI resided in the present because they would never fully recover. Some of the persons with ABI talked about a fragile time horizon, dependent on their physical abilities in the future, and located their hope in their ability in the present to maintain their functional level ( 58 ). In temporal terms, you might therefore say that the horizon was further away than in the earlier stages of the persons' rehabilitation or recovery process.

For persons with stroke and aphasia it was described that a sense of hope persisted in the light of challenges, and the hope of things could be better was pivotal to getting through each day ( 61 ). By contrast, actively engaging in a future-oriented hope was identified by Bright et al. as quite troublesome for people with stroke and aphasia ( 60 ). Nevertheless, Strong et al. suggested that participation in a co-construction process 2 with a speech-language pathologist was supporting persons with aphasia to engage in an intentional exploration of this process of actively hoping ( 64 ) making it into a sort of bridge and offering the possibility of getting the individual closer to that horizon.

3.2.2.3 Sub-theme: self, identity, and desirable futures

Both studies that focused on self and identity centered on persons with stroke and aphasia ( 60 , 64 ). It was experienced by persons in these studies that there was a disruption to their identity, leading to feelings of loss of identity. This loss of identity could also influence their experience of hope:

“I sort of thought ‘Oh, maybe. Maybe it's me’ and then I then I I thought about it you know, again the other night and I thought ‘Oh nah, it's not me’ and I just, I just I just can’t agree whether it's me or not” ( 60 ).

It was found that hope arose from what was perceived as meaningful to the participants and their sense of self, e.g., roles in life, sense of identity, faith, or an outlook on life. Hopes appeared to be relatively easy to identify and appeared from reflecting on past hopes and ways of being, the present and on their possible future ( 60 ). However, actively hoping could be more difficult for persons with communication difficulties as it was strongly language-based and involved identification of specific hopes. Hope, identity, and social connectedness were closely intertwined as hope could enable people with aphasia both to dwell in the present and to move towards to more desirable futures ( 61 ). The same study also found that persons with aphasia recalibrated their hopes for the future. This calibration process was influenced by the person's corresponding journey of identity re and co-construction. These two factors were therefore identified as significant in the recalibration of hope ( 61 ).

Strong et al. also found that the process of co-constructing a personal narrative with persons with stroke and aphasia was experienced as being positive ( 64 ). One of the individuals in this study felt it changed his life, suggesting that this process supported a positive view of identity. Hope engendered by the co-construction experience seemed to empower persons with stroke and aphasia with new levels of confidence, not only in their communication skills but also in themselves:

“You know. I know now there's hope. I’m I’m going to make it you know. I’ll be okay. I’ll get better and better. And and take time, but I’m getting better and better. And I I can do it. You know? I can I can I can do anything” ( 64 ).

As described earlier, Antelius stated in her study that: “In temporal terms there might be a horizon far away, but in narrative terms it is not an open one” ( 58 ). Applying a co-constructing intervention, as Strong et al. did in their study, seems to be a process that supports persons with communication difficulties (aphasia) to engage in an intentional exploration of the process of actively hoping ( 64 ), thus having the potential to open the horizon in narrative terms as well.

3.2.3 Theme 3: progress, goals and visibility

Four of the included studies dealt specifically with progress and its significance in relation to hope ( 59 – 62 ). Three sub-themes were identified.

3.2.3.1 Subtheme: progress intwined with hope and facilitated by rehabilitation professionals and peers

Seeing one's own progress as well as the progress of others was something that persons with stroke found to be a source of hope. Hope and progress appeared to have a mutually reinforcing effect ( 60 , 61 , 63 ).

For persons with aphasia, meeting other persons with aphasia was found to be important and instilled hope. Many had never heard of aphasia before, just as they had never met someone with aphasia, making it impossible for them to know what kind of progress was possible ( 60 ). In another study four persons were interviewed one year after their stroke, focusing on how hope might have changed during that year. The interviewees described increased hope for the future when they perceived they were making progress; conversely, a lack of progress threatened their sense of hope ( 60 ).

One study investigated the subjective experiences and reflections of persons with communication difficulties (aphasia) about constructing and maintaining therapeutic alliances in rehabilitation ( 62 ). In this process, the relationship between the person with aphasia and the health professional was shown to be of great importance. Even though this study focused on a specific group of professionals (speech and language therapists), the same may be true for other rehabilitation professionals. When progress was perceived as slow or imperceptible by the person, feedback from the therapist was of great importance as it was found to inculcate confidence and hope ( 62 ). As Terry in Lawton et al.'s study put it:

“[…] She could see something in me, that, yet although I could see it myself that was the goal I was going for. She could see beyond that, and she was getting me, by the scruff of the neck [gesturing], that's where you want to be across there like…it just gave me enough kick up the pants [laughs] to you know come back and fight” ( 62 ).

Thus, the therapist played a pivotal role, not only in making progress visible, but also in believing in the person, offering them hope for future improvement. It was precisely this kind of progress which was identified by persons with ABI as important in the maintenance and growth of hope ( 59 ). When persons with ABI in the study by Bellon et al. were asked to reflect on times where they felt they had made functional improvements or progress, they were thinking of milestones such as getting rid of a walking stick or being able to read a book in bed. Thus, every day events which showed their improvement and gave hope ( 59 ). Thus, the rehabilitation team was important for the participant's ability to build hope for recovery:

“They (municipal health care team) really came and stayed here and did something. They showed faith in positive development and supported me in that. It's important to convey that recovery can still happen, although the progress is slow” ( 65 ).

3.2.3.2 Sub-theme: goals to make progress visible

Across the included studies, goals were identified as another important theme regarding hope ( 60 – 62 , 64 , 66 ). As expressed by one of the persons with ABI:

“…One aspect that they’ve really got right is focusing on the goal setting. It makes people more positive, and it gives them hope for the future” ( 59 ).

Persons with ABI emphasized the importance of setting goals that were achievable and realistic and warned of the dangers of having unachievable goals: “If I set my goals too high, I fall into a, like my depression goes up, and I get all, it's not worth it. So, I do things little by little” ( 59 ).

In studies including persons with stroke ( 60 , 62 , 64 , 66 ), goals were found to be of importance since hope for recovery reflected the determination to move forward or to meet aspirational goals:

“Keeping myself driven, I am good with that, that is very forward moving, having something to focus on giving me goals, targets, aims and pointers and stuff and that suits me…” ( 66 ).

A strong multidisciplinary approach to rehabilitation using tangible goals to direct recovery seemed important for persons with stroke, as they used goals as a way of being hopeful about the future:

“I want to get rid of the sexy stockings (compression stockings) by the end of this week, you have to walk 10 meters unaided before they go. So they are going this week. I have decided” ( 66 ).

3.2.3.3 Sub-theme: goals based on personal wishes

Professionals could risk undermining the hopes of the persons with ABI, and thereby increasing hopelessness or resignation about their future, by clinging to unrealistic hopes. This made it crucial to support people in imagining future possibilities when lack of progress hit ( 61 ). According to Lawton et al., genuine collaboration was dependent on the therapist's ability to listen carefully to the person with aphasia's narrative if they wanted to generate goals concordant with the person's priorities and needs ( 62 ). Persons who felt that their therapist had attempted to incorporate their personal wishes felt highly engaged with the process, which directly impacted on their engagement in rehabilitation:

“Sometimes she would lead the sessions and sometimes she would … not … … erm … … well … she would let me … have the floor and that, I think that was important as well” ( 62 ).

On the other hand, persons with stroke could feel inadequately understood, if the rehabilitation was not based on their personal wishes:

“They just had a plan of returning me back to work. It was their goal. When they repeated that every time we met, then I started to cry I think, every time” ( 65 ).

Strong et al. also found that the process of co-constructing a personal narrative with persons with aphasia was experienced as being positive, offering an opportunity for the individual to actively contemplate the future and their own goals ( 64 ).

3.2.4 Theme four: the alliance; a balancing act requiring good communication skills

The importance of the therapeutic alliance and rehabilitation professionals' skills is a theme in more than half of the included studies in this review, making it a substantial factor relating to hope in a rehabilitation or recovery process ( 59 – 62 , 64 , 65 ). This theme seemed to be even more decisive when it came to persons with stroke and communication difficulties (aphasia) ( 60 – 62 , 64 ). Three sub-themes were identified in relation to this analytical theme.

3.2.4.1 Sub-theme: hope promoting relationships

The professionals' ability to provide hope for persons with stroke and aphasia appeared to be influenced by the strength of the therapeutic relationship ( 60 ). At the same time, engagement in the therapeutic process was described as central to the establishment of a partnership between the person with stroke and the health professional. An effective alliance could promote adherence and instill hope whereas an ineffective alliance eroded hope ( 60 , 65 ). If the professionals were perceived to be too distant, maintaining rigid and inflexible boundaries, it could directly affect persons' engagement in rehabilitation as this was incompatible with their needs ( 62 ). This was especially true in the early stages of rehabilitation, during which persons with ABI were highly vulnerable and therefore needed more than professional distance.

On the other hand, being too attached posed a risk to independence and encouraged overreliance ( 62 ). Close alliances were characterized as genuine, friendly, non-judgmental, caring, open and connected. In order to provide the necessary infrastructure for establishing positive therapeutic relationships, the therapist needed to base it on honesty, trust, and respect ( 62 ). The therapeutic alliance was challenged when the person with ABI experienced unmanageable pressure about what to do or manage, as the confidence in the professional then was challenged. Also, professionals’ lack of expertise could challenge the alliance as this constituted a source of frustration for the person with ABI, as could controversies developing between persons with ABI and professionals or among professionals ( 65 ).

3.2.4.2 Sub-theme: keeping hope on a leash

In the study by Bellon et al. the persons with ABI had mixed experiences of how professionals had encouraged or discouraged their hope, some recalling positive and some negative experiences. Negative experiences could involve the professionals being negative about the(ir) future ( 59 ). As a participant in the study by Bellon et al. explained:

“Definitely, it is most positive for them [professionals] to … encourage people to have hope. As I said I’ve seen a lot of people who’ve given up the ghost, and a lot of times they’ve been … given bad advice or no hope by their so-called specialists, and they’ve given up” ( 59 ).

Receiving a bleak prognosis or meeting professionals that were negative about their future had a negative impact on the person with ABI's experiences of hope.

Some persons with ABI felt that the therapists had a responsibility to mask their lack of faith in their progress. However, they also requested a balance between optimism and realism ( 65 ). Some even expressed that hope and encouragement from others were essential for them. Like in the case of Matthew in Bright et al.'s study (2020), who evaluated people for their hope giving qualities considering whether: “… they’re the ones that are offering hope”, or if they should be in his “no hope basket” ( 61 ).

3.2.4.3 Sub-theme: professional competences

The skill set of professionals was of considerable importance across studies as professionals had the potential to discourage or encourage hope in the person with ABI ( 59 , 60 , 62 , 65 ). According to Bellon et al., professionals could beneficially impact upon a person's experience of hope through person-centered and supportive therapeutic relationships ( 59 ). Taule and colleagues identified that successful encounters involving encouragement, empathy and equality seemed to promote the person with stroke's confidence in the professional's ability to help them manage their condition, as well as their sense of empowerment and their hope that they would be able to cope successfully in the future ( 65 ).

Participants appreciated and expressed a desire to cooperate with professionals who displayed essential therapeutic qualities, described as follows:

• Empathetic

• Taking time to listen

• Offering comfort

• Being nice

• Enthusiastic

• Making optimistic statements ( 65 ).

One skill that persons with stroke and aphasia identified as particularly important in helping them to think positive and be hopeful about the future was the professionals’ ability to be supportive. It was also perceived as necessary for the therapist to have highly attuned communication skills in order for the person with aphasia to have a sense of being heard and understood ( 60 , 62 ). Skills like empathetic understanding (not just understanding), giving time and getting to know the human being (not just the diagnosis) were potentially of even greater importance if the persons were to avoid isolation, build trust and maintain hope. As the participant in the study by Lawton expressed it:

“She (professional) helped me because she understood uhh everything really so she umm helped me with me moods and things like that and family and understanding about you know because it's diffi it's diffi it's like a total change from what it was” ( 62 ).

4 Discussion

4.1 summary of main findings.

This qualitative synthesis of evidence highlights several key issues for persons with ABI to sustain and instill hope in a time of uncertainty and hopelessness. The four analytical themes and eleven sub-themes identified through thematic synthesis were (1) hope a two folded phenomenon, with the sub-themes “hope as a driving force” and “hope as a source of despair”; (2) time and temporality, with the sub-themes “living one day at a time”, “a fixed future in later stages of the rehabilitation process?” and “self, identity and desirable futures”; (3) progress, goals and visibility, with the sub-themes “progress intwined with hope and facilitated by rehabilitation professionals and peers”, “goals to make progress visible”; and “goals based on personal wishes” and lastly (4) the alliance; a balancing act requiring good communication skills, with the sub-themes “hope promoting relationships”, “keeping hope on a leash” and “professional competences”.

Previous systematic qualitative reviews have primarily explored hope in persons with stroke and left out other subgroups of ABI such as people with traumatic brain injury, hemorrhages in the brain other than stroke etc. ( 36 , 44 , 45 ). Moreover, most of the included studies in these reviews did not give voice to people with communication difficulties following ABI as they were often excluded (ibid).

This review includes all ABI groups and the findings are in line with previous reviews, in that hope is multifaceted (potentially having a positive as well as a negative effect), influenced by several factors (e.g., personal, or social), and crucially related to the establishment of goals ( 36 , 44 , 45 ). All four analytical themes were identified based on experiences that included both persons with TBI, haemorrhage etc. as well as stroke.

Our review highlights several good reasons to pay attention to time and temporality. First, time and temporality serve as a frame within which everything else unfolds, including the rehabilitation or recovery process. Secondly, time and temporality are shown to be of great importance for persons with ABI, especially in the later stages of their rehabilitation or recovery process. The results suggest that hope is to be found elsewhere in the more chronic phases of the rehabilitation, calling for different perspectives and amplifying the importance of the present instead of having a fixed view of the future. For persons with communication difficulties, time and temporality seems to play into their necessity to be rooted in time—specifically, in the present, which serves as an anchor and makes it possible to look at the future with the support of rehabilitation professionals. This leaves us with the question of whether it is easier to maintain or instill hope in earlier stages of rehabilitation compared to later stages? A study by Bright et al. showed that conversations about the future also seems to be constrained and limited in the inpatient setting poststroke ( 68 ). The study explored how clinicians talk about the future with patients and Bright et al. found that these types of conversations were constrained to short-term futures and limited to what aspects of life after stroke were discussed. According to Bright et al. being able to create conversational and relational spaces where people are supported to look into the future with a sense of possibility, hope, and potential is vital for persons to move forward in their lives post stroke. Based on their findings they conclude that, communication must be seen as a core clinical skill and a clinical intervention in its own right ( 68 ).

Our findings suggests that the relationship to professionals can promote adherence and instill hope, especially for persons with aphasia. This is supported by a meta-synthesis from 2020, where relationships were identified as being critical for persons experiencing communication impairment after stroke ( 69 ). In practice, this requires strong communicative competences in rehabilitation professionals ( 70 , 71 ).

Communication partner training is an approach that has shown to be useful in supporting communication skills ( 72 – 76 ). In Denmark the method Supported Conversation for Adult with Aphasia (SCA) is relatively widespread in practice. A review by Christensen et al. shows that also cognitive communication disorders of people with TBI challenge the interaction between rehabilitation professionals and persons with TBI. Their findings demonstrate that the communicative barrier is closely related to the professionals' communicative approach. Moreover, that rehabilitation professionals holding a collaborative and acknowledging approach using supportive strategies are the ones that may facilitate successful communicative interactions ( 77 ). This point to the fact that rehabilitation professionals must be given the opportunity to acquire the necessary competencies in communication strategies.

Rehabilitation strives for a coherent approach, with the bio-psycho-social model forming the basis for rehabilitation ( 32 , 33 ). Danish research in the field of brain injury has nevertheless shown that rehabilitation continues to primarily be aimed at physical and functional rehabilitation and does not adopt a holistic focus where the person's existential and emotional situation is considered ( 32 , 33 ). Rehabilitation of the person's “inner life world” (inside-perspective), understood as dealing and coping with personal, identity-related, and emotional challenges, including hope, is given less focus, although it is an important and central aspect of a bio-psycho-social approach ( 32 , 33 ). Being a professionally skilled occupational therapist or neuropsychologist is therefore not enough. In addition professionals need personal competences ( 70 ). According to Deegan, who has lived experience with disabilities, a decisive step toward understanding the experience of the person with a disability is that rehabilitation professionals embrace and accept their own woundedness and vulnerability because in doing so, “we share a common humanity” ( 78 ).

According to the Mattingly, professionals often focus on what she calls “the medical hope”, a narrow understanding where hope alone is tied to curation and rehabilitation in a more traditional sense. The hope of persons with an illness or disability, however, often involves a much broader understanding of hope as a journey towards healing or recovery, trying to find a positive meaning in what has happened ( 79 – 83 ).

The biomedical model offers no definitive cure when it comes to the physical and psychological consequences of an ABI. However, recovery is not only a pathological matter. Regaining quality of life can happen despite pathological consequences. Thus, there is an imperative need to hope even when everything seems hopeless. Hopelessness can have major consequences for the person, as it has been shown to be associated with depression and suicide across diagnoses ( 84 – 86 ). Hope, on the other hand, has been shown to have a positive impact on rehabilitation outcomes both for persons with mental and physical impairments ( 32 , 33 , 84 , 87 , 88 ). Within neurorehabilitation, it has been seen as good practice to confront persons with ABI with their disabilities since this could lead to greater insight and acceptance of difficulties and thus to a greater motivation to explore their limitations. In practice, however, it appears that confrontations do not necessarily lead to increased motivation. On the contrary, confrontations can lead either to individuals giving up and thus losing motivation and hope, or to mental resistance ( 89 ). This leaves rehabilitation professionals to walk a thin line between encouraging and discouraging hope when it comes to especially persons with ABI lacking insight in their own impairments.

Our analysis furthermore reveals that hope, identity, and social connectedness are closely intertwined as hope gives persons with aphasia the possibility both to dwell in the present but also to move forward. The co-construction of identity change are significant in the person's ability to recalibrate hope, which is often necessary during a rehabilitation or recovery process. For years anthropologists have written about the positive traits of narratives, in that story—told or acted upon—carry a healing potential through their contribution to the transformation of identity, interpretation of the past and even the creation of future scenarios ( 82 , 90 ). When persons acquire a brain injury and are faced with an uncertain future, focusing on life as lived in and over time can therefore make good sense, since such life-changing experiences create a natural focus on both the past and the future. Our review suggests that collaborating with the person on co-constructing a personal narrative holds the potential to support a positive view of identity and to empower persons with aphasia (or other communication difficulties) with new levels of confidence in themselves. This is in line with research within the field of communication disorders, where several studies talk about co-constructed communication as being essential in offering communication partners a way to approach everyday conversation and supporting positive narratives that reaffirm a sense of self ( 91 – 93 ).

Professionals may be afraid of giving false hope, which is why they may end up promoting too little hope to the person with ABI. Being with persons who have wishes, hopes, and dreams for the future, and who at the same time are in a situation that complicates the achievement of these, can be experienced as difficult for professionals. Findings in this review suggest that there is an opposite relationship between professionals playing a vital role, not only in making progress visible, but also in offering persons with ABI hope for future improvement.

Being the “holder” of another human being's hope is not an easy task. In fear of giving false hope, professionals may imply and maintain a less hopeful rehabilitation perspective instead ( 66 ). It appears that professionals’ capacity to contain despair and maintain hope prevents the person from giving up and feeling devastated by the brain injury. This require professional skills to tolerate the uncertainty and despair of the person's life. This kind of support is particularly crucial in times when progress is slow.

As we clearly see in this and other reviews, goals are connected to hope. In an ethnographic study by Tonnesen and Nielsen among persons with Parkinson's disease, they found that rehabilitation goals could appear as steppingstones towards hope ( 94 ). The correlation between goals and hope is also emphasized in this review. Progress seems to be paramount for the person's ability to maintain hope over time, thereby making goals a way for professionals to make progress visible. Researchers such as Levack and colleagues have also linked rehabilitation goals and hope. Levack et al. found that rehabilitation goals may keep hope alive by symbolizing possible progress ( 95 ). In a Cochrane review from 2008, Levack and colleagues concluded that there is low quality evidence that goal setting may improve outcomes for adults in rehabilitation with various disabilities, and moreover that the best graded evidence favors positive effects for psychosocial outcomes (such as emotional status, health-related quality of life, etc.) rather than physical outcomes ( 95 ). In this review, persons with ABI and professionals have a clear focus on goal setting in relation to their physical functions, whereas functions in relation to psychosocial conditions are absent. Once again, it is important to stress that goals relating to the psychosocial dimension are equally important when trying to uphold a bio-psycho-social approach in rehabilitation.

Future research should consider looking at experiences of hope in specific stages of the person's rehabilitation or recovery process. This could be of importance for further understanding of the concept of hope as it develops especially over time and in time. Furthermore, future research should consider exploring whether gender, age, social network or pre-injury personality influence the way in which persons with ABI experience hope in their rehabilitation or recovery process. Last, a specific focus on persons with communication difficulties—specifically the subgroup of persons with TBI and cognitive communication disorders, could be of great value as this is often an overlooked group. This group of persons may have unique needs that warrant separate exploration which is why it is important to also include studies that provide persons with communication difficulties with a voice ( 47 ).

4.2 Implications for practice

In light of our results, professionals are advised to consider the impact of giving or taking hope away when it comes to the population of persons with ABI. This review supports the need for practice to acknowledge the deep and fundamental importance of the concept of hope as a major part of the rehabilitation and recovery of persons with ABI, and even more so for persons with communication difficulties such as aphasia.

The literature included in this study provides an insight into why hope is often described as a paradox, having both positive and negative qualities embedded. This paradoxical concept requires professionals to make individual assessments of each person with ABI to find out how hope can best be supported, in the light of the person's personality, social network, etc., as well as where the person is in their rehabilitation or recovery process.

Especially for the subgroup of persons with communication difficulties, there seems to be a need for professionals to acquire skills in how to support conversation and the co-construction of narratives. This entails knowledge on how to work with the personal narratives of the individual, making it crucial that professionals gain qualifications on how to use supportive conversation techniques and tools.

At the same time, this review underlines that professionals play a crucial role when it comes to maintaining supportive relationships and instilling hope throughout the rehabilitation or recovery process. The role requires professionals to value the humanity and personhood of the persons, making them feel heard and understood and keeping a hopeful stance about their potential for recovery. This calls for highly attuned communication skills, along with the ability to contain despair and uncertainty on behalf of the person without losing hope entirely.

If practice therefore wants to offer rehabilitation grounded in a bio-psycho-social approach, then the psychosocial wellbeing of the person needs to be a primary outcome of the rehabilitation on an equal footing with outcomes concerning physical functions. Thus, professionals need to have a raised awareness of the emotional support required if an individual is to recover from a brain injury as a whole person. That is to refer to appropriate health professionals and have cross disciplinary collaborations. This again points to the necessity of setting goals for the physical and more practical part of the person's rehabilitation as well as the psychosocial part of the person's overall recovery.

Professionals should be knowledgeable about the emotional dimensions of rehabilitation during their training and education. The current professional training sequence includes limited information about the relational impact professionals can have on persons in rehabilitation and the psychosocial dimensions of this process. If we are to pay greater attention to social and psychological factors in the lives of people with disabilities and chronic health conditions, there need to be opportunities for cross-disciplinary professionals in general to have continuing education in psychosocial rehabilitation and to work with and develop their own personal skills at various levels of training.

4.3 Limitations

We have used an aggregative review form, namely a systematic review of qualitative research, as we wanted to accumulate knowledge relevant to the phenomenon of hope and show relationships among the pieces of knowledge across the included studies ( 96 ). In doing so we have tried to guide the selection of studies by clear eligibility criteria just as a systematic approach has been applied in the different steps of the review process. A review protocol was outlined and adapted along with the search process but only used as a working tool for the authors and therefore not registered at e.g., PROSPERO.

With this review we wanted to explore hope as experienced by the broad ABI population in a rehabilitation or recovery setting. This resulted in studies that cut across diagnostic groups covering many different impairments and taking place in a mixture of in- and outpatient services at several different stages of the rehabilitation or recovery process. In our thematic synthesis we have tried to be transparent about the different contexts of the included studies, but nevertheless the broad scope of this review is both a strength and a weakness. There is a limitation upon transferability of the findings in relation to the contextual data presented in the studies that could have been followed more closely throughout the review if the context of the studies had been more alike.

Although some of the included studies in this review only had few participants the data from these qualitative studies were of great importance as they gave valuable insight into an often-excluded group: People with ABI and communication difficulties (aphasia). So even though some would argue it to be a limitation (small sample size), it proved to be necessary in this qualitative review in order to represent the broad group of people with ABI.

Most of the included studies were gathered in high or middle-income countries which probably has a significance in that other perspectives could be imagined to be present in low-income countries, which possibly do not have the same infrastructure around healthcare.

The thematic synthesis methodology applied to this review offers a transparent approach to the synthesis of the primary studies; however, future research should consider whether other approaches used to analyse data could help bring other aspects of hope to the surface.

4.4 Conclusions

According to the findings of this review, rehabilitation professionals should embrace the ambiguity of hope, as a driving force as well as a source of despair. Attention must be paid to time and temporality and how to make progress visible as well as tangible for persons with ABI during their rehabilitation or recovery process. Finally, rehabilitation professionals must acknowledge the relationship with the individual with ABI as a core component of the rehabilitation in general. This requires a focus on professionals' personal competences, as a hope-promoting relationship between the professional and the person with ABI seems to be needed in order to accommodate to the psycho-social part of the bio-psycho-social approach.

Author contributions

CH: Conceptualization, Data curation, Formal Analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Software, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing. CG: Conceptualization, Data curation, Formal Analysis, Methodology, Supervision, Validation, Writing – review & editing.

The author(s) declare financial support was received for the research, authorship, and/or publication of this article.

This review is part of a full PhD scholarship funded by the rehabilitation center “Neurorehabilitation Copenhagen”, Municipality of Copenhagen, Denmark (DK).

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fresc.2024.1376895/full#supplementary-material

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Keywords: hope, acquired brain injury, rehabilitation, recovery, literature review, qualitative studies, thematic synthesis

Citation: Højgaard Nejst C and Glintborg C (2024) Hope as experienced by people with acquired brain injury in a rehabilitation—or recovery process: a qualitative systematic review and thematic synthesis. Front. Rehabil. Sci. 5:1376895. doi: 10.3389/fresc.2024.1376895

Received: 26 January 2024; Accepted: 26 April 2024; Published: 14 May 2024.

Reviewed by:

© 2024 Højgaard Nejst and Glintborg. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Camilla Højgaard Nejst, [email protected]

This article is part of the Research Topic

Vol II: Person-Centred Rehabilitation – Theory, Practice and Research

• Open access
• Published: 09 May 2024

Overlooked by the obstetric gaze – how women with persistent health problems due to severe perineal trauma experience encounters with healthcare services: a qualitative study

• Katharina Tjernström 1 ,
• Inger Lindberg 1 ,
• Maria Wiklund 2 &
• Margareta Persson 1  

BMC Health Services Research volume  24 , Article number:  610 ( 2024 ) Cite this article

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During the first year postpartum, about 25 per cent of Swedish women with severe perineal trauma (SPT), i.e., a third- or fourth-degree perineal laceration at childbirth, are unsatisfied with their healthcare contacts. Further, there is a lack of research on the more long-term experiences of healthcare encounters among women with persistent SPT-related health problems. This study explores how women with self-reported persistent SPT-related health problems experience their contact with healthcare services 18 months to five years after childbirth when the SPT occurred.

In this descriptive qualitative study, a purposive sample of twelve women with self-reported persistent health problems after SPT were individually interviewed from November 2020 – February 2022. The data was analysed using inductive qualitative content analysis.

Our results showed a paradoxical situation for women with persistent health problems due to SPT. They struggled with their traumatised body, but healthcare professionals rejected their health problems as postpartum normalities. This paradox highlighted the women’s difficulties in accessing postpartum healthcare, rehabilitation, and sick leave, which left them with neglected healthcare needs, diminished emotional well-being, and loss of financial and social status. Our results indicated that these health problems did not diminish over time. Consequently, the women had to search relentlessly for a ‘key person’ in healthcare who acknowledged their persistent problems as legitimate to access needed care, rehabilitation, and sick leave, thus feeling empowered.

Conclusions

Our study revealed that women with persistent SPT-related health problems experienced complex health challenges. Additionally, their needs for medical care, rehabilitation, and sick leave were largely neglected. Thus, the study highlights an inequitable provision of SPT-related healthcare services in Sweden, including regional disparities in access to care. Hence, the authors suggest that Swedish national guidelines for SPT-related care need to be developed and implemented, applying a woman-centered approach, to ensure equitable, effective, and accessible healthcare.

Peer Review reports

Intrapartum and postpartum healthcare should ideally be high-quality, evidence-based, and a positive experience stemming from woman-centred care with a holistic approach based on human rights [ 1 ]. This approach acknowledges each woman’s articulated needs and expectations in her social, emotional, physical, spiritual, and cultural context [ 2 ]. Nevertheless, during the first year postpartum, about one in four Swedish women with severe perineal trauma (SPT) [ 3 ], i.e., a third- or fourth-degree perineal laceration involving the anal sphincter muscle and anorectal mucosa at vaginal childbirth [ 4 ], are dissatisfied with their care and one in three women report ongoing health problems related to their SPT. Women with SPT may suffer from various physiological and psychological consequences such as pain [ 5 , 6 ] , incontinence [ 7 ], defecation problems [ 8 ], vaginal prolapse [ 5 ], sexual dysfunction [ 9 ] or depression and anxiety [ 10 , 11 , 12 ].

Reducing physical symptoms is essential to support emotional and social recovery after any perineal trauma [ 13 , 14 ]. Women with SPT emphasise that professional, competent, and respectful attitudes from healthcare professionals (HCPs), including individual and adapted information, facilitate, and promote their postpartum recovery. Thus, the HCPs’ competence and knowledge of treatment options is a prerequisite for women to access needed care [ 15 ]. An additional problem in the Swedish context is the lack of national recommendations or guidelines, which enables each of the 21 regions to develop own regional and local guidelines. An audit of the existing regional and local guidelines for prevention and care of SPT shows an unexpected diversity or lack of evidence-based recommendations [ 16 ]. However, dissatisfaction with access to healthcare has been expressed by women with persistent, i.e., beyond one year postpartum, SPT-related health problems [ 6 , 17 ]. Furthermore, women criticise inadequate or absent support [ 6 , 18 ], poor information and education [ 6 , 10 , 18 ], and lack of follow-up care regarding SPT and its potential psychological and social consequences [ 6 , 10 ]. Postpartum care focuses more on the baby than the mother’s well-being [ 18 , 19 ]. Also, the available treatment options are perceived as limited and outdated by those with access to needed care [ 17 , 18 ]. Moreover, women with SPT describe that some HCPs tend to normalise their SPT-related problems [ 10 , 17 , 18 , 19 , 20 , 21 , 22 ], and women are met in unprofessional and disrespectful ways [ 17 , 23 ], where HCPs are perceived as ignorant, nonchalant, and questioning women’s symptoms [ 10 , 17 ]. Previous research [ 24 ] indicates an institutional objectification of women with SPT by Swedish healthcare providers hindering access to healthcare, sick leave, and occupational rehabilitation after SPT. In contrast, women also report being acknowledged and liberated when HCPs have a professional and empathic approach and provide continuity of care that enables access to care for persistent SPT-related health problems [ 17 , 18 , 19 , 25 ]. Thus, several women who sustained an SPT during childbirth do not experience access to needed and necessary care, a fact that needs further exploration.

Globally, sexual and reproductive health and rights (SRHR) are crucial for individual health and gender equality [ 26 ]. Current issues within SRHR and midwifery are controlled by the institutional power in health institutions, i.e., medical power [ 27 ], connected to the still-existing economic and educational disadvantages of women globally, which are also feminist issues [ 26 , 28 ]. As midwife stands for ‘with woman’ [ 28 ], gender or feminist approaches are used in advancing midwifery theory [ 27 , 29 ] and various aspects of SRHR topics such as breastfeeding promotion [ 30 ], birth plans [ 31 ] and attitudes towards contraceptives [ 32 ]. In midwifery and feminist approaches, the biological material body and the socially constructed gendered body are viewed as intertwined [ 33 ]. Moreover, midwifery care is recommended to be woman-centred [ 1 , 2 ], focusing on the individual woman’s needs and transferring control from the institution to the woman herself. However, despite the different organisations of sexual and reproductive healthcare between countries, international research shows similar results regarding women’s diverging experiences with postpartum SPT-related healthcare [ 6 , 15 , 17 , 18 ].

In sum, there is growing evidence showing that many women with persisting health problems caused by SPT are often, but not always, met with mistrust and ignorance when seeking care for their problems. Even though there may be national, regional, or local protocols or guidelines for care after SPT, women with persistent SPT-related problems still raise their voices about the difficulty of getting access to competent quality care. This indicates a potential gender bias [ 34 ] and a need for gender theoretical perspectives in midwifery [ 28 ], as utilized in this study. Additionally, few studies explore the care-seeking experience among this group of women in a longer time perspective after childbirth when the SPT occurred.

The aim of this study is to explore how women with self-reported persistent SPT-related health problems experience their contact with healthcare services 18 months to five years after childbirth when the SPT occurred.

Study design and context

The present study is part of a larger research project investigating the long-term consequences of SPT on quality of life, working life, and healthcare contacts. This study had an inductive qualitative interview study design applying qualitative content analysis to analyse data [ 35 , 36 , 37 ]. This method searches for patterns, e.g., by identifying similarities and differences in the data. The researchers obtain an in-depth understanding of the studied phenomenon through abstraction and interpretation [ 36 ]; thus, an appropriate method to apply to capture women’s experiences of their healthcare encounters when seeking medical help and support. Throughout the research process, the recommendations for qualitative research according to ‘Consolidated criteria for reporting qualitative research’ (COREQ) were followed [ 38 ].

Sweden has 21 partly independent regions primarily responsible for providing healthcare services to the population. Healthcare services are tax-funded, and the regions have extensive autonomy to decide upon the healthcare services within each region based on the frameworks of the Health and Medical Service Act [ 39 ]. Additionally, within the Swedish social security system, 480 days of paid parental leave are allocated to each child in Sweden and can be utilised by their legal guardian(s) until the child is twelve years old. Of these 480 days, 60 days are specifically assigned to each parent, and the remaining days are split between parents as desired. The financial compensation is based on the parent’s income and is financed by taxes [ 40 ].

In Sweden, midwives are the primary care providers to women with normal pregnancies, births, and postpartum care. In case of complications to pregnancy and childbirth, midwives collaborate with other medical professionals, especially obstetricians. For example, midwives suture first- and second-degree perineal lacerations, while obstetricians are responsible for all SPT repairs [ 41 ]. Generally, in Sweden, women who sustain an SPT during childbirth are offered a check-up with the obstetrician responsible for the repair before discharge and should also have a follow-up with an obstetrician or sometimes a physiotherapist within the postnatal period. Thereafter, women with no mayor initial healing problems are advised to contact relevant healthcare services if any health issues related to the SPT should arise in the future. Women presenting with complicated healing are treated accordingly. Additionally, women with second- to fourth-degree perineal lacerations are assessed with questionnaires three times during the first year postpartum by the National Perineal Laceration Register. However, there are no recommendations in Sweden for prolonged check-ups for women with SPT after the postnatal period and no guidelines on organised check-ups for women with prolonged symptoms due to SPT exist [ 42 , 43 ].

Women with persistent SPT-related health problems and characteristics were purposively recruited to achieve a heterogeneous sample reflecting multiple experiences. An overview of inclusion and exclusion criteria can be found in Table 1 .

The closed Swedish Facebook community ‘Förlossningsskadad? Du är inte ensam!’ [‘Injured at childbirth? You are not alone!’] functioned as a recruitment platform for a national sample of women reporting persistent SPT-related health problems. The Facebook community is secluded to women with SPT and started in 2014. During the data collection period (Nov 2020 – Feb 2022), the group had over 7,600 members; today, the community has grown to include over 9,500 members [ 44 ].

In late November 2020, the administrators of the Facebook community pinned a digital poster with study information and a link to the study homepage in the group feed. The study homepage contained written information on the research project and contact details for the research group if any women wanted additional information about the study. Interested potential participants contacted the research group via a contact form on the homepage, and the first author (KT) confirmed that the potential participants met the inclusion criteria via telephone. Thirteen participants from different parts of Sweden showed interest in participating and left their contact information. One woman never responded to our efforts to reach her. The remaining twelve women fulfilled the inclusion criteria and were invited to an interview. Before the interview, the women answered a digital survey on background data (such as demographic data, education, employment, sick leave, and childbirth history) distributed via REDCap ® , a web-based application to create secure online questionnaires and research databases [ 45 ]. The interviews were finalised in February 2022.

Data collection

We collected data via individual open-ended interviews [ 46 ], supported by a semi-structured interview guide [see Additional file 1 ]. The interview guide, developed by KT and MP with input from MW and IL, was based on literature reviews, our awareness of gender as a social construct [ 33 ], and the clinical pre-understanding within the research group. After a pilot interview conducted by KT (not included in the data), minor adjustments were made to the interview guide. The final interview guide covered the topics of everyday life experiences, work, and general functioning. However, despite the mentioned interview topics, the emergent study design and the ability to speak freely about what was perceived as important for their daily functioning, the contacts with healthcare services was brought up in vivid and extensive narratives by all participants as part of their descriptions of their challenges in everyday life and their ability to function at work. Hence, the experiences the women made of the healthcare services played an important role for the women in their daily management of SPT-related health problems.

As data collection occurred during the COVID-19 pandemic, all participants were interviewed digitally via Zoom ® [ 47 , 48 ]. With the participant’s consent, the interviews were audio-recorded via Zoom ® and a separate digital recorder (as backup). Any Zoom video files automatically generated were deleted directly after the termination of the interview to protect participants’ identities. The first author interviewed all women; in two interviews, co-authors (IL or MW) also attended. The authors had no professional or personal affiliation with the enrolled participants . Detailed interviews ranging from 29 – 112 minutes (median: 61.5 minutes) gave extensive data. All interviews were performed in Swedish and transcribed verbatim. After that, the first author validated the transcripts for accuracy by reviewing the text while listening to the recordings.

Authors’ pre-understanding and theoretical positionality

The research group comprises three midwives (KT, IL, MP) and one physiotherapist (MW). We all have extensive professional experiences from clinical practice in primary and in-patient care, where three authors (KT, IL, MP) have specific professional experiences of caring for women with SPT. Additionally, we are women, feminists, and mothers with various birth experiences. Further, the group holds expertise in gender studies and qualitative research within midwifery science, such as perineal trauma and medical sociology. Hence, we stem from a social constructivist research standpoint and utilise ourselves as co-constructors in the analysis process. As feminist researchers, we apply a gender theoretical lens to the data.

Data analysis

The interviews were analysed using qualitative content analysis with an inductive and stepwise approach focusing on the manifest and latent content [ 35 , 36 , 37 ]. The interviews, transcripts, and analysis steps were performed in Swedish.

The analytical procedure started with reading the transcripts multiple times while highlighting text, meaning units, with content relevant to the aim of this study. Then, identified meaning units were condensed, focusing on preserving their core meaning and labelled with manifest codes [ 35 , 36 , 37 ]. Initially, KT coded one interview and triangulated those codes with the principal investigator (MP). KT then coded the rest of the interviews. In the next step, similar codes were clustered, forming subcategories based on the manifest content. Moving towards an interpretation of the content, categories were created by the abstraction of subcategories. This was done by KT and MP separately and then triangulated to identify significant concepts. Next, the preliminary categories and subcategories were triangulated with the whole research group until a consensus was obtained. To answer the question of ‘what?’ and ‘how?’ within the data, the latent content and thread of meaning were identified by clustering and abstracting the emerging findings to form subthemes and a theme [ 36 , 37 ]. The emerging findings were also peer-reviewed and discussed at a research seminar. The finalisation of the analysis resulted in an overarching theme and four subthemes. The translation of categories, subthemes, theme and inserted citations from Swedish into English was performed as a last step. The translation and choice of words were discussed between authors (all knowledgeable in English) to reach a consensus and minimise translation bias.

During the coding process, the researchers used MAXQDA ® [ 49 ], a software for organising, transcribing, analysing, and visualising qualitative research data, and Microsoft Excel ® [ 50 ] as aids to organise the codes.

Demographics of included participants

The background characteristics of the twelve participants in the final sample are presented in Table 2 .

The participants identified themselves as cis women, i.e., their gender identity matched their sex assigned at birth [ 51 ], and are thus referred to as ‘women’ in this paper. All women were in a partner relationship. The women reported a broad spectrum of physical and phycological health problems following the SPT at childbirth, e.g., urine or anal incontinence, pain in the lower abdomen, sexual dysfunction, and depression. Thirty per cent of the women had full-time employment, and the proportion of parental leave varied from 12% to 100% (three women had an ongoing parental leave with subsequent children at the interview). Further, 60% of the women had a sedentary occupation. Five women had been on sick leave after reconstructive surgery, and five reported sick leave for other reasons than their SPT.

The analysis resulted in one theme, ‘Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body’, with related subthemes ‘Questioning whether it’s all in my head’, ‘Fighting persistently for access and legitimacy in no (wo)man's-land’, ‘Facing multidimensional losses when no help in sight’, and ‘Depending on other’s advocacy to navigate an arbitrary system’. An overview of the findings is presented in Table 3 . The findings are presented as an overarching theme and thereafter, the related subthemes and categories. Citations from the participants illustrate the findings. All women have been allocated pseudonyms in the result presentation.

Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body

The latent theme ‘Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body’ represented the women’s experiences of healthcare encounters covering HCPs’ diminishing attitudes towards women’s persistent SPT-related health problems and the women’s difficulties accessing healthcare and sick leave. We interpreted that the women were assessed by the HCPs’ ‘obstetric gaze’, i.e., a medical gaze in postpartum healthcare normalising their persistent health problems and judging the women’s lower abdomen as ‘fine’ by their looks. The obstetric gaze put the women in a paradoxical situation where HCPs normalised tangible symptoms to be a natural part of childbirth. With no medical legitimacy of the health problems, the women also felt labelled as ‘hysterical’ (exaggerating health problems) by the HCPs. As a result, on the one hand, they had to continue facing persistent and tangible health problems such as incontinence, pain or prolapses. On the other hand, no acknowledgement by HCPs of their health problems led them to question whether their problems were merely a product of their imagination and, thus, only existed ‘in their head’. The theme also comprised women’s struggle for legitimacy in a gendered healthcare system - a no-(wo)man's land. They experienced that healthcare services and social insurance systems were challenging to access and demanded a tenacious and extensive fight to obtain legitimacy for their health problems. Consequently, the women had to put up with neglected healthcare needs, negatively impacting their physical and emotional well-being, and financial and social status when no medical help or rehabilitation was available. However, some women had encountered an HCP who was empathic and understanding, hence not guided by the obstetric gaze. Such encounters legitimised persistent problems and were crucial for accessing needed care, sick leave, and rehabilitation.

Questioning whether it’s all in my head

The subtheme ‘Questioning whether it’s all in my head’ focused on the women’s experiences of facing ignoration and no confirmation of perceived health problems and thus being labelled as a hysterical woman. The related categories referred to a normalisation process that the women experienced in their encounters with HCPs, which made them question their bodily perceptions. Furthermore, the women felt accused of exaggerating symptoms because their persistent SPT-related health problems did not match HPCs’ views of acceptable postpartum symptoms. Thus, it could be understood that the women found themselves in a paradox of suffering from tangible physical consequences after SPT, which were normalised by HCPs and their ‘obstetric gaze’.

Facing HCP's ignoration of perceived problems

The women experienced the HCPs defining their persistent health problems after the SPT as ‘normal’. The HCPs assured the women that their problems would disappear with time or that transient motherhood-related aspects, such as breastfeeding or fragile vaginal mucosa, were the cause of the problem. One woman expressed:

“Then I felt, ‘It should not feel like this; this is something wrong’, and I sought medical attention and was seen by multiple physicians […] They thought my vaginal mucous membrane was not ready for intercourse. I was still breastfeeding, so they thought I should stop breastfeeding. Then maybe the mucous membrane would be restored, which was causing me the pain. I was not listened to at all. I was treated very poorly by one physician in particular, and despite second opinions and so on, nobody… nobody took me seriously.” (Linda)

Consequently, the women perceived that their concerns were ignored. They also learned that the HCPs saw their prolonged physical problems after SPT as an inevitable part of childbirth, which the women should accept. One woman resigned:

“But then [the physician] says something like this: ’Well, that's completely normal’, but I felt like, ‘Yes, but it doesn't feel normal'.” (Emma)

After the genital and pelvic floor examinations, the HCPs often guaranteed the women that ‘everything looked fine’, i.e., reinforcing the normality of the genital area. Although the women described to the HCPs that they struggled with SPT-related problems, their concerns were met with a comment on the physical appearance rather than a comprehensive examination of the pelvic floor's functionality.

One woman responded:

“They think ‘everything looks fine’ and ‘everything looks good and repaired’. I still have problems. I was also referred to a surgeon, who did a rectoscopy, and ‘it looked so nice’. Then, I was referred to a urotherapist to learn how to pinch my muscles because ‘everything would be so good’. She helped me get a second opinion in XX [town], where they discovered that there was still damage." (Jin)

Another woman expressed:

”I couldn’t care less what it [genital area] looks like. Nobody will be down there watching. I only need it [genital area] to function as intended.” (Anna)

Consequently, the women felt ignored and unheard in their contact with healthcare services. They perceived that HCPs did not listen to them, leaving them feeling invisible, sometimes even having severe health problems.

“I was hospitalised with sepsis before someone listened to me.” (Josefin)

Being labelled as a hysterical woman

The women also experienced being labelled as the ‘hysterical woman’ who exaggerated their persistent symptoms and had mental health problems. The women described how the HCPs accused them of imagining their SPT-related health problems. One woman indignantly revealed that the HCP she encountered said, 'These problems only exist in your head’ (Joanna), i.e., suggesting that the perceived symptoms did not exist and rejecting the health concerns. Hence, this attitude made some women believe their problems were a product of their imagination and sometimes made them even question their sanity.

Moreover, the HCPs’ condescending attitudes towards the women made them feel dismissed and devalued. For example, the women shared that HCPs laughed at them or were rough or cold during the examination. Moreover, HCPs expressed that they had ‘seen worse’ (Amanda). Some women also conveyed that they were advised ‘to drink some wine to feel better’ (Elin) when discussing painful intercourses due to their SPT-related health problems.

“You are constantly dismissed, ‘No, but everything looks fine, you have no problems’. Then you start to think you’re imagining things. And then you may not dare to talk about the injuries.” (Jin)

Fighting persistently for access and legitimacy in no (wo)man's-land

The subtheme ‘Fighting persistently for access and legitimacy in no (wo)man's-land’ referred to the women’s experience of gender constructs related to inaccessible healthcare services and their often year-long struggles to access this gendered healthcare and linked social insurance systems. The difficulties in accessing care created negative attitudes towards the healthcare services, making the women wish for general improvements in women’s healthcare.

Struggling to access the gendered healthcare and social insurance systems

The women pointed out that after giving birth, they needed more extensive information on their injury, precautions, available help (follow-up care or re-operation), and sick leave. To overcome the lack of required information, they had to request or actively search for it on their own, which also led to uncertainty about where and when to seek further help if needed.

“I was sent home with a brochure and a pat on the shoulder.” (Amanda)

The women also experienced a lack of adequate healthcare services targeted at their SPT-related health problems. For example, many women did not have access to a pelvic floor clinic or had to travel long distances to see specialists. Hence, their place of residence decided the quality of care the women received. Moreover, some women problematised the organisation of postpartum care as they missed out on follow-up care and even, in some cases, were denied follow-up care or referrals to specialised care were lost. As a result, some women had no opportunity to talk to the operating physician or experienced no follow-up care, although they requested it.

“They said it can take up to a year to get better. So, when that year had passed, and before starting to work again, I called different places in the hospital and asked: What should I do now? […] It took several months before I got an appointment with the surgeon for an assessment. And then I had to get a second opinion. So, it took like seven months before I got an appointment at [a specialist clinic].” (Hawa)

For the women, access to healthcare services, sick leave certificates, and HCPs’ dismissive attitudes were perceived as gender-related, i.e., difficulties in obtaining help from women’s healthcare services would not exist if the services were more women-oriented. One woman illustrated this by expressing: ‘If men gave birth to babies, the situation would not be like this’ (Joanna). Moreover, they perceived that women’s healthcare services were not prioritised. They explicitly stated that the absence of sick leave certificates and benefits was related to their gender. The women were expected to cope without sick leave benefits because vaginal and perineal lacerations of any scope were viewed as a natural part of childbirth, a normal process of a woman’s body. Thus, sequelae thereof did not exist or were taboo in society.

“Everything that happens during and after childbirth and related injuries has been a taboo discussion topic, so it has been completely ‘normal’ to suffer from persistent pain.” (Anna)

“I have applied for compensation from the national patient insurance. I got rejection after rejection; nothing has gone wrong. I was told: 'You simply must expect these things in childbirth. And a caesarean section is not less risky'.” (Hawa)

Thus, the women argued that society and the government did not invest needed resources in women’s healthcare. In addition, those few women receiving a short period of sick cash benefits had it immediately after giving birth or after re-operation, but not for prolonged problems. Further, the women noted that they were not offered sick leave certificates due to persistent physical SPT-related health problems but instead due to mental issues, such as depression or anxiety.

“I've heard about women who have been mentally unwell and have hurt their children. So maybe physicians get cautious and put women on sick leave if they say, ‘I'm not feeling mentally well’. Then they act quickly because they think it's so important. But they don't think about the physical injuries because that's part of [childbirth].” (Jenny)

However, the women shared how they fought long and hard for acknowledgement and care and made demands; for many, this process had covered years. They had to repeatedly insist that something was wrong and felt pressure to prove their health problems to the HCPs. In some women, this led to their persistent problems being diagnosed and acknowledged after several years of delay. The struggle for care involved countless visits and referrals to different HCPs, demanding much strength and persistence, which exhausted them. Sometimes, the sequelae had to develop into an acute health situation, or some women decided to pay for private care to access the proper treatment and rehabilitation. Further, with time, they also became explicit about their demands for sick leave certificates and benefits.

“Well, it [short sick leave period because of birth traumas] just feels like scorn. To me, it is not a sufficient length of sick leave.” (Elin)

Wishing for improvement in women's healthcare

The perceived lack of adequate care and rehabilitation, access to sick leave benefits, and HCPs’ attitude negatively influenced the women’s opinions on healthcare services, especially postpartum healthcare. In addition, the women perceived many HCPs as unprofessional, indifferent, and unstructured. As a result, the women mistrusted the HCPs and lost hope in healthcare services. Thus, they were reluctant to seek further care and were anxious about receiving proper treatment or that HCPs would miss important things.

“I am not being listened to in women's healthcare. This is partly why I feel so disappointed.” (Linda) “You just don't trust the healthcare system. […] Some people have been struggling with their injuries for like 18 years. But the [specialist clinic] – I finally received fantastic treatment, and what if it could be available everywhere [in Sweden]?” (Hawa)

Moreover, the women described a struggle for their rights when deciding whether to report the HCPs to the authorities and pointed out the need to improve women’s healthcare. Reporting HCPs was perceived as complicated as the women did not want to blame specific individuals. The women saw that the major problem lay within the healthcare system and with individual HCPs.

“In the end, I met a fantastic person [healthcare professional]. She wanted me to report the mistreatment when I eventually had the strength. Because no one listened when I said I was ill. So, she has offered to help me if I want to, but I don't know if I have the strength to file a complaint.” (Josefin)

A wish to improve women’s healthcare services was articulated, especially regarding personal follow-up care beyond one year postpartum and the possibility of full-time or part-time sick leave certificates and benefits for persistent problems on equal terms. This wish also strengthened their decision not to give up searching for help and to raise their voices to help themselves and other women.

“I received physiotherapy and the follow-up surveys [the Perineal Laceration Register] during the first year, but thereafter I would have liked to have an annual follow-up for the next years to ensure the status and potential re-operations. […] I can google, but I want to have that information in dialog with a living person, but you do not get that.” (Jenny)

Partaking in developing educational material for HCPs or starting a career within women’s healthcare were some women’s ways to contribute and increase competency in persistent SPT-related health problems.

“One of my strategies since I got the injury is also to try to influence. Being able to be involved and influence what postpartum care should consist of.” (Jin)

Facing multidimensional losses when no help in sight

The subtheme ‘Facing multidimensional losses when no help in sight’ covered physical and mental health consequences and the financial and social losses the participating women faced when no support or access to needed care and rehabilitation was provided.

Being physically victimised by HCP's malpractice

The women’s experiences covered either being misdiagnosed during the suturing after birth or in the following years when seeking help for persistent SPT-related health problems. Further, they shared how physicians had incorrectly sutured vaginal and perineal muscles after childbirth, leading the women to live with incontinence, pain, prolapses, or sexual dysfunction if their vaginas were sutured too tight. They also described how they endured infections, wound ruptures, sepsis, necrosis, and re-operations. Additionally, the women perceived a general lack of competency regarding communication and persistent SPT-related health problems, including problems related to sex life and sexual functioning, besides a more specific lack regarding suturing techniques and ultrasound examinations.

“I was referred to a specialist clinic. And they found out that all the muscles were separated, the internal and external sphincters were torn, and my pinching ability was kind of weak. So, it was quite the opposite, really, quite the opposite. None of what the other physician had said was true [laughs]. Absolutely incredible. And she is supposed to be a specialist.” (Hawa)

Aching inside

Living with troubled postpartum bodies and the absence of HCPs’ legitimation of the women´s problems made them struggle mentally, feeling speechless and silenced. This neglect reinforced irritation, anger, distress, bitterness, and disappointment towards the HCPs and the healthcare services. One woman illustrated the emotional struggle in this way:

“It's just that the health services don’t believe you, which makes you feel terrible. It's a big deal that no one listens.” (Josefin)

Moreover, the women felt uncertain about their health status due to a default medical diagnosis with concerns for their future and which staff to trust. Consequently, some had to bite the bullet, put up with their situation, and try to think positively. Other women were denying or diminishing their SPT-related health problems, accepting that their symptoms would improve, even disappear or that their condition was ‘normal’ as they had been told. Further, the women described despair because their neglected health problems caused by their SPT made them feel exposed, unsure, and hopeless. In some, this desperation resulted in a mental breakdown, a fear of losing custody of their child due to mental illness or suicidal thoughts.

“Something broke inside of me that day. I felt entirely omitted; I was close to leaving my son and committing suicide. Nobody understood how bad everything was.” (Elin)

Additionally, the women suffered emotionally when motherhood was crushed. Their partner had to take the primary responsibility for the family, and the children had to come in second place as the mothers suffered from various physical and mental health problems. As a result, the women felt they missed their children’s development and could not use their parental social security benefits as desired.

“I feel devasted because people tell me, ‘You are on maternity leave’. I’m not on maternity leave; I’m sick. I should be on sick leave.” (Jaanika)

Suffering financial and societal losses

Moreover, the women suffered financially and societally due to persistent health problems. Some women were denied financial compensation from Patient Insurance (a national insurance system where patients can seek compensation for care injuries). The Social Security Agency and the HCPs were perceived as obstacles to receiving sick cash benefits. They noted that ‘extensive’ health problems were required to receive sick cash benefits and that their health problems paradoxically were not seen as extensive or even a problem per se by the HCPs; hence, no sick leave certificates were issued.

“He [the physician] tried to argue and clarify my pain situation in the sick leave certificate to meet the requirements for a sick leave benefit at the Social Security Agency. I was in so much pain and had to lie down to breastfeed. But, no, ‘If you can manage to hold the baby when breastfeeding, then you are on maternity leave, not sick leave benefit’ [mimicking the official at the Social Security Agency who rejected the certificate and consequently also the sick cash benefit]”. (Jaanika)

Furthermore, the women were set back financially and societally because they could not work full-time due to their persistent health problems. Therefore, some women chose to compensate for their work absence with part-time parental benefits to diminish their working hours and cover their inability to work due to persistent SPT-related health problems. Without a sick leave certificate, i.e., the physicians or the officials at the Social Security Agency’s acknowledgement of a ‘true’ health problem, partners or other relatives were obliged to adjust their work schedules to support or unburden the woman’s suffering and inability to work full-time. This reduction in working hours for the SPT-affected women and, in some cases, their partners was expressed to potentially negatively affect their upcoming careers and pensions. As a result, the women experienced being caught between stools in the social insurance systems:

“[…] You end up in a position where you are neither on sick leave nor unemployment benefits and at the same time cannot perform any offered work [due to persistent problems]. But multiple societal bodies demand and expect you to be a part of the working force, and nobody really listens.” (Elin)

Depending on other’s advocacy to navigate an arbitrary system

The last subtheme, ‘Depending on other’s advocacy to navigate an arbitrary system’, highlights the women’s experiences of, often by chance, finding a single devoted professional, i.e., a ‘key person’, to access needed care and rehabilitation. Such a ‘key person’ was vital to recognising persistent problems, legitimating symptoms, and enabling access to needed care, sick leave, and rehabilitation. The women who finally had legitimation for their health problems described that the medical diagnosis also came with a feeling of sanity and empowerment, relieving them of their paradoxical situation.

Encountering a ‘key person’ to receive needed care

A support system was a prerequisite for enduring their health problems and finding the strength to fight for access to care. This system could be a partner, other family members, or friends who gave the women power and courage, but most importantly – encountering a professional who saw their problems and provided referrals or other options to obtain the needed help and support. In most cases, women would search for years for competent HCPs, such as midwives, physicians, or physiotherapists, who would listen and acknowledge persistent problems. This ‘key person’ showed empathy and trustworthiness, creating relief and security. Further, the ‘key person’ was portrayed as competent, attentive, professional, and respectful. The ‘key persons’ also shared women’s outrage at the mistreatment and default healthcare they endured. Additionally, these ‘key persons’ were surprised that the women were not on sick cash benefits due to their symptoms and that they had to compensate for their financial situation with parental benefits or reduced working hours and lower salaries. Consequently, finding this ‘key person’, often by chance or word of mouth, was crucial for accessing care and marked a significant turning point in the women’s recovery.

“I sought help from another midwife, as I felt something was wrong. This midwife referred me to the physiotherapist, who referred me to a specialist, who then referred me to surgery and rehabilitation.” (Malin)

Some women received follow-up care for their persistent SPT-related health problems during the first year postpartum. If persistent problems occurred and were acknowledged, the women were offered different surgical approaches with various outcomes, consultations by colon specialists, physiotherapy, and psychiatric care. They were grateful for the help they received but felt more comprehensive care was needed.

Feeling sane and empowered

Confirmation of persistent SPT-related health problems was expressed as liberating, strengthening and, as one woman put it, a ‘win’ (Elin). Receiving a medical diagnosis and appurtenant treatment was relieving because the medical confirmation of the symptoms released a considerable burden. These women described being acknowledged, and the diagnosis proved that health problems existed, and the struggles were not in vain. Furthermore, it explicitly stated to everyone, including themselves, that they were not ‘crazy’, ‘imagining things’ or ‘hysterical’.

“So, my laceration has been classified as an injury caused by the healthcare services. This was somehow a confirmation. It's not just that it's in my head, but it has been established that it is a medical injury, and it could have been avoided.” (Jin)

Alongside feelings of sanity and being legitimised, the women experienced empowerment. The women felt supported and confident. Thus, finding an agency to address the taboo of their SPT by talking openly about it and helping others in the same situation was also seen as therapeutic. Further, the legitimation of the sequelae and access to appropriate care gave them time to heal and process their trauma. Receiving sick leave certificates and benefits was seen as a part of the empowerment and legitimacy of their persistent SPT-related health problems, reducing stress, and easing the financial burden. Furthermore, access to occupational rehabilitation and understanding at work became available. Thus, the women who had received the help they needed after a struggle to obtain it were hopeful about the future and possible recovery.

“I have regained my authority to speak up. It [SPT-related health problems] should be out in the open, not withheld.” (Jaanika)

Our main finding was that women with persistent health problems due to SPT at childbirth were caught in a paradox of living in a normalised but traumatised body, and their health problems were rejected as postpartum normalities. Furthermore, our results elucidated the difficulties in accessing postpartum healthcare, rehabilitation, and sick leave benefits. Therefore, the women struggled with neglected healthcare needs, diminished emotional well-being, and loss of financial and social status. Our study highlighted experiences up to 5 years after sustaining SPT, which showed that some women’s SPT-related health problems do not diminish with time. They faced challenges functioning in daily life, at work, and in society. In contrast, finding a ‘key person’, i.e., a professional who acknowledged the women’s persistent problems as legitimate, was a prerequisite for accessing all the needed care and sick leave and enhancing empowerment for the women. Thus, this ‘key person’ was not blinded by the obstetric gaze and instead used their agency and advocacy as support.

In the following, we will discuss our findings related to other empirical studies and problematise them with theoretical reflections.

The paradox of normalising the postpartum body

In our findings, the paradox arose when the HCPs dismissed physical health problems after SPT despite women’s perceived symptoms. Central in this context was a normalisation process where health problems were regarded as ‘normal’ by HCPs, a phenomenon also found in prior research on SPT [ 17 , 18 , 19 , 20 , 21 , 22 ]. The HCPs’ normalisation of women’s health problems can also be found regarding other medical conditions affecting women, such as pelvic organ prolapse [ 52 ], menstrual pain [ 53 ], endometriosis [ 54 ] or nausea and vomiting during pregnancy [ 55 ]. In light of the medicalisation of women’s healthcare, where the medical field has sought to pathologise natural bodily processes such as pregnancy and childbirth [ 33 ], actual medical conditions such as persistent SPT-related health problems are paradoxically normalised. Our findings, therefore, highlight the need to challenge HCPs’ views of what constitutes a ‘normal postpartum body’ or ‘normal postpartum symptoms’ after sustaining SPT.

The key to healthcare

In the context of denied legitimacy of health problems and neglected needs, it appeared that the women became dependent on the goodwill of a ‘key person’, personified as the respectful, competent, and empathetic HCP. Prior research on SPT has also found women struggling with accessing healthcare [ 6 , 17 ] and specific HCPs as enablers of care [ 12 ]. The dependency on a ‘key person’ to access adequate care might highlight a structural problem within the provision of postpartum SPT-related healthcare. Globally, there are a few national guidelines on SPT management and prevention [ 56 ]. Additionally, no national guidelines regarding postpartum care of SPT exist in Sweden, and pelvic floor teams are only available in some Swedish regions [ 16 ]. In our study, the women lacked information, and competent HCPs were hard to find or located far away. Other studies have shown poor patient information and education as a postpartum problem [ 6 , 10 , 18 ], indicating a need to develop targeted oral and written information on wound healing and recovery. Further, women in Australia describe similar challenges to accessing SPT-related healthcare when having persistent SPT-related health problems [ 18 ]. The absence of national Australian guidelines may have led to inconsistent care, failing to meet women’s healthcare needs. Further, women from rural areas have had additional difficulties accessing needed care. In 2021, a clinical standard for SPT was implemented in Australia, comprising care standards for follow-up [ 57 ]. Thus, to improve the national situation in Sweden, more research and resources must be allocated to develop evidence-based recommendations, preferably internationally accepted guidelines [ 56 ]. Moreover, the accessibility of SPT-related healthcare, such as pelvic floor clinics, needs to be expanded so that women can easily meet their ‘key person’ if required.

Woman-(de)centred care?

We found that HCPs were obstructed by their obstetric gaze when assessing women with persistent SPT-related health problems. Obstetric gaze derives from the medical gaze notions [ 58 ], suggesting a gaze that splits the individual from the body, constructing the care-seeker as a medical object or condition instead of an individual with a social context. This gaze blinded HCPs who normalised obvious health problems. Recent advances in women’s healthcare in industrial countries and midwifery research show development towards continuity of care models with a woman-centred approach in different caseload-midwifery projects and informed choice regarding place of childbirth [ 28 , 59 , 60 , 61 ]. Wom e n-centred care [ 2 ] is a widespread care philosophy within midwifery that advocates for providing individualised care to women. Further, wom a n-centred care emphasises the individual woman’s healthcare needs and situation, incorporating the concepts of choice, control, continuity of caregiver, and self-determination. It can be argued that the obstetric gaze obstructed HCPs in providing wom a n-centred care because they did not acknowledge the women’s healthcare needs. Consequently, the women did not have control over their health situation. Making women feel empowered [ 2 , 62 ] is crucial in woman-centred care. Hence, the ‘key persons’ in our study managed to provide wom a n-centred care where acknowledgement of problems as real medical problems and access to care made the women experience empowerment. Therefore, we argue that guidelines regarding follow-up care after SPT should ideally be developed with wom a n-centred care as its core.

Everything looks fine

The biomedical model has traditionally focused on normality and abnormality rather than health [ 63 ]. Theoretically, the ‘obstetric gaze’ is closely tied to the ‘medical gaze’ and the ‘male gaze’, referring to the biomedical paradigm and its power [ 27 , 58 ]. In our study, the obstetric gaze judged the women’s persistent health problems due to SPT as ‘normal’ and the appearance of their genital area as ‘fine’, which created a paradoxical situation regarding the legitimacy of their ongoing health problems after SPT. Generally, the healthcare sector is critiqued for reducing the body to only incorporating organs and tissue, i.e., focusing on physical symptoms [ 27 ].

The women in our study, of which most showed more than one significant symptom after SPT, noted that HCPs would comment on the physical appearance of the perineal area rather than its functionality by telling them that ‘everything looked fine’. The focus on looks rather than functionality regarding SPT-related health problems aligns with the findings presented by others [ 17 ]. Having women describe how their persistent physical pelvic floor problems after SPT during childbirth are trivialised, normalised, questioned, and labelled as mental health issues is of utmost concern. This implies the need for rapid improvements in HCPs’ knowledge and organisation of care but also raises the question of what is considered a normal status and recovery after any perineal laceration in the short- and long-term perspective. A similar discursive focus on women’s appearance instead of their health problems has also been found among HCPs when women seek care for chronic pain [ 64 ]. The sentence ‘Everything looks fine’ can be interpreted as an objectifying, gendered discourse in an obstetric context. This discourse may reinforce the obstetric gaze and, in the broader sense, the medical gaze [ 58 ]. The Swedish Health and Medical Care Act [ 39 ] advocates for the respectful treatment of patients. Hence, it is noteworthy that the women experienced being judged by the looks of their genital area in their medical encounters rather than HCPs addressing the functionality. Such treatment does not align with the legislation and calls for a discourse analysis of the attitudes of HCPs towards women with persistent SPT-related health problems and their experiences of providing care for affected women.

Being subjected to obstetric gaslighting

In light of the women’s perception of their dismissal as dramatic, illegitimate, and irrational patients, we argue that they faced so-called ‘gaslighting’ in an obstetric context [ 65 , 66 ]. Thus, the women experienced being offered sick leave for mental problems instead of their perceived physical health problems, depicting them as hysterical women who exaggerated their condition. Gaslighting is a concept used in medicine in general [ 66 ] and in obstetrics regarding traumatic childbirth experiences [ 65 ]. The concept of hysteria, i.e., a prior medical diagnosis and historical concept theoretically linked to femininity [ 67 , 68 ] and ‘obstetric gaslighting’ [ 65 ], has also been found in research on women’s chronic pain [ 64 ] and endometriosis [ 69 ]. Men with chronic pain are perceived as brave, and women in pain are hysterical, emotional, whining, malingering, or imagining pain [ 64 ]. Further, women with endometriosis are viewed as ‘reproductive bodies’ with a proneness for hysteria [ 69 ]. Obstetric gaslighting, enforced by the normalisation of SPT-related health problems and the gendered stereotype of women as hysterical patients, puts women with SPT in an inferior position towards HCPs and can, therefore, be interpreted as a demonstration of institutional power [ 65 ]. Hence, being overlooked by the obstetric gaze might constitute a form of obstetric gaslighting, a concept that has not been applied to SPT before.

Implications and significance

Our study indicated that women continue to have problems accessing healthcare for persistent SPT-related health problems several years postpartum. Additionally, women with persistent SPT-related health problems often depended on a ‘key person’ with the competence to open the doors to comprehensive care, as shown in our findings. The Swedish Government launched a multi-million project from 2015 to 2022 to improve and promote women’s health [ 70 ]. Despite this investment, the depicted experiences of the included women reflect upon remaining structural and clinical problems within Swedish healthcare, which need further attention, investigation, and actions. Additionally, there are considerable differences in reported satisfaction and prevalence of complications at the one-year follow-up between the regions [ 3 ], indicating that there are suboptimal healthcare services. With a significant variation in satisfaction and recovery at one year, there are reasons to believe that women with prolonged problems may experience problems getting access to needed care.

Our study also showed that SPT-related healthcare services are not available on equal terms to women with persistent SPT-related health problems. In general, many women within this group had problems accessing care and sick leave for years. However, depending on where the women reside, not all women have access to specialised care. This inequity may be explained by Sweden having 21 self-governing health regions, and in the absence of national guidelines regarding SPT care and follow-up, the healthcare provision for affected women varies. To secure access to postpartum care for women with SPT in general and those with different prerequisites within this group, implementation studies are needed to develop and evaluate the effect of national guidelines for follow-up care regarding SPT.

Strengths and limitations

This study has strengths and limitations that need to be addressed. A significant strength, enhancing credibility and transferability, was providing a clear context and thick descriptions of our results, where we thoroughly portrayed the women’s voices using quotations [ 35 ]. Further, our detailed account of the study context, data collection, and data analysis process facilitated the transferability of our study. Including three women born outside of Sweden added to the variety of the sample and thus improved credibility because qualitative research often overlooks immigrants' experiences. However, the migrant women spoke Swedish well enough to participate in an interview, indicating that they have been living in Sweden for some time and might be familiar with the healthcare system. Finally, the credibility and dependability of this study were also strengthened by the frequent use of interdisciplinary triangulation between the authors throughout data analysis and the writing process, as well as peer review at a research seminar.

A potential limitation was that this study may not have fully explored the situation of women with fourth-degree lacerations or those with lower education, as most participants had third-degree perineal lacerations and higher education. Further, we could not include non-binary persons and same-sex or single parents, which may be a weakness; consequently, future studies should focus on the under-represented participant groups and migrant women needing an interpreter. Additionally, all women responded voluntarily to the study invitation. Thus, our participants might be particularly outspoken about their problems or interested in raising their voices or experiences. However, they represented a variety of persistent SPT-related health problems of various severity, and some had been able to get access to medical help, whereas others had not. Additionally, our findings cohered to similar studies [ 12 , 17 ] covering shorter periods after the SPT, which may indicate that the experiences of the challenging search for needed help remain over time. Therefore, our findings may reflect other women’s experiences seeking care for SPT-related health problems and may be transferable to other women’s experiences with persistent health problems of a rare condition.

The data for this study was comprehensive and rich. Information power in qualitative research is an ongoing discussion, and the number of participants and their representativity can be seen as a limitation of credibility and transferability [ 71 , 72 ]. Graneheim, Lindgren and Lundman [ 36 ] argue that sample size should be determined by the study’s aim and the data’s quality so that variations in experiences can be captured. They do, therefore, not recommend a specific number of participants, but others do [ 71 ]. With this in mind, the authors believe that the women’s detailed descriptions of the included concepts and the extensive length of the conducted interviews enabled us to achieve sufficient information power based on the richness of the data [ 72 ].

By qualitatively exploring how women with persistent SPT-related health problems experienced their healthcare encounters, we interpreted that they faced a paradox of being reassured of normality by HCPs despite reporting sequelae symptoms. Thus, women’s needs for medical care, rehabilitation, and sick leave were largely neglected. Further, our study might indicate a structural problem within women’s postpartum healthcare, indicating that access to care depended on encountering a ‘key person’, a professional who acknowledged persistent problems as real symptoms. Access to quality care provided with a professional attitude was essential for the future well-being of women with persistent SPT-related health problems. Thus, it should not depend on meeting a single ‘key person’. Therefore, national guidelines for long-term postpartum care of persistent SPT-related health problems must be developed in Sweden. Additionally, to ensure that healthcare services meet the individual needs of women with persistent SPT-related health problems, it is crucial to consider arranging the organisation and availability of quality care for these women from a woman-centred perspective.

Availability of data and materials

The original recordings and transcripts from the current study are not publicly available due to securing the individual privacy and confidentiality of the participants. Data are available from the corresponding author upon reasonable request.

Abbreviations

Healthcare professionals

Interquartile range

Strategic Research Area Health Care Science

• Severe perineal trauma

Sexual and reproductive health and rights

World Health Organisation

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Acknowledgements

We want to thank the participating women for generously sharing their experiences.

Open access funding provided by Umea University. This work was supported by the Research Lift (SWE: Forskningslyftet) and Strategic Research Area Health Care Science (SFO-V), Umeå University. The funders had no specific role in the conceptualisation, design, data collection, analysis, publication decision, or manuscript preparation.

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Katharina Tjernström, Inger Lindberg & Margareta Persson

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KT: conceptualisation; data curation; formal analysis; investigation; methodology; validation; visualisation; writing - original draft; writing - review & editing. IL: conceptualisation; methodology; supervision; visualisation; writing - review & editing. MW: conceptualisation; methodology; supervision; visualisation; writing - review & editing. MP: conceptualisation; data curation; funding acquisition; methodology; project administration; supervision; visualisation; writing - review & editing. All authors read and approved the final manuscript.

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Additional file 1. Semi-structured interview guide for individual interviews; contains interview questions aimed at highlighting the experience of everyday life and working life after suffering 3 rd or 4 th degree perineal laceration at childbirth (i.e., severe perineal trauma [SPT]).

Additional file 2. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist.

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Tjernström, K., Lindberg, I., Wiklund, M. et al. Overlooked by the obstetric gaze – how women with persistent health problems due to severe perineal trauma experience encounters with healthcare services: a qualitative study. BMC Health Serv Res 24 , 610 (2024). https://doi.org/10.1186/s12913-024-11037-5

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Qualitative Methods in Health Care Research

Vishnu renjith.

School of Nursing and Midwifery, Royal College of Surgeons Ireland - Bahrain (RCSI Bahrain), Al Sayh Muharraq Governorate, Bahrain

Renjulal Yesodharan

1 Department of Mental Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

Judith A. Noronha

2 Department of OBG Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

Elissa Ladd

3 School of Nursing, MGH Institute of Health Professions, Boston, USA

Anice George

4 Department of Child Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

Healthcare research is a systematic inquiry intended to generate robust evidence about important issues in the fields of medicine and healthcare. Qualitative research has ample possibilities within the arena of healthcare research. This article aims to inform healthcare professionals regarding qualitative research, its significance, and applicability in the field of healthcare. A wide variety of phenomena that cannot be explained using the quantitative approach can be explored and conveyed using a qualitative method. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research. The greatest strength of the qualitative research approach lies in the richness and depth of the healthcare exploration and description it makes. In health research, these methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

Introduction

Healthcare research is a systematic inquiry intended to generate trustworthy evidence about issues in the field of medicine and healthcare. The three principal approaches to health research are the quantitative, the qualitative, and the mixed methods approach. The quantitative research method uses data, which are measures of values and counts and are often described using statistical methods which in turn aids the researcher to draw inferences. Qualitative research incorporates the recording, interpreting, and analyzing of non-numeric data with an attempt to uncover the deeper meanings of human experiences and behaviors. Mixed methods research, the third methodological approach, involves collection and analysis of both qualitative and quantitative information with an objective to solve different but related questions, or at times the same questions.[ 1 , 2 ]

In healthcare, qualitative research is widely used to understand patterns of health behaviors, describe lived experiences, develop behavioral theories, explore healthcare needs, and design interventions.[ 1 , 2 , 3 ] Because of its ample applications in healthcare, there has been a tremendous increase in the number of health research studies undertaken using qualitative methodology.[ 4 , 5 ] This article discusses qualitative research methods, their significance, and applicability in the arena of healthcare.

Qualitative Research

Diverse academic and non-academic disciplines utilize qualitative research as a method of inquiry to understand human behavior and experiences.[ 6 , 7 ] According to Munhall, “Qualitative research involves broadly stated questions about human experiences and realities, studied through sustained contact with the individual in their natural environments and producing rich, descriptive data that will help us to understand those individual's experiences.”[ 8 ]

Significance of Qualitative Research

The qualitative method of inquiry examines the 'how' and 'why' of decision making, rather than the 'when,' 'what,' and 'where.'[ 7 ] Unlike quantitative methods, the objective of qualitative inquiry is to explore, narrate, and explain the phenomena and make sense of the complex reality. Health interventions, explanatory health models, and medical-social theories could be developed as an outcome of qualitative research.[ 9 ] Understanding the richness and complexity of human behavior is the crux of qualitative research.

Differences between Quantitative and Qualitative Research

The quantitative and qualitative forms of inquiry vary based on their underlying objectives. They are in no way opposed to each other; instead, these two methods are like two sides of a coin. The critical differences between quantitative and qualitative research are summarized in Table 1 .[ 1 , 10 , 11 ]

Differences between quantitative and qualitative research

Qualitative Research Questions and Purpose Statements

Qualitative questions are exploratory and are open-ended. A well-formulated study question forms the basis for developing a protocol, guides the selection of design, and data collection methods. Qualitative research questions generally involve two parts, a central question and related subquestions. The central question is directed towards the primary phenomenon under study, whereas the subquestions explore the subareas of focus. It is advised not to have more than five to seven subquestions. A commonly used framework for designing a qualitative research question is the 'PCO framework' wherein, P stands for the population under study, C stands for the context of exploration, and O stands for the outcome/s of interest.[ 12 ] The PCO framework guides researchers in crafting a focused study question.

Example: In the question, “What are the experiences of mothers on parenting children with Thalassemia?”, the population is “mothers of children with Thalassemia,” the context is “parenting children with Thalassemia,” and the outcome of interest is “experiences.”

The purpose statement specifies the broad focus of the study, identifies the approach, and provides direction for the overall goal of the study. The major components of a purpose statement include the central phenomenon under investigation, the study design and the population of interest. Qualitative research does not require a-priori hypothesis.[ 13 , 14 , 15 ]

Example: Borimnejad et al . undertook a qualitative research on the lived experiences of women suffering from vitiligo. The purpose of this study was, “to explore lived experiences of women suffering from vitiligo using a hermeneutic phenomenological approach.” [ 16 ]

Review of the Literature

In quantitative research, the researchers do an extensive review of scientific literature prior to the commencement of the study. However, in qualitative research, only a minimal literature search is conducted at the beginning of the study. This is to ensure that the researcher is not influenced by the existing understanding of the phenomenon under the study. The minimal literature review will help the researchers to avoid the conceptual pollution of the phenomenon being studied. Nonetheless, an extensive review of the literature is conducted after data collection and analysis.[ 15 ]

Reflexivity

Reflexivity refers to critical self-appraisal about one's own biases, values, preferences, and preconceptions about the phenomenon under investigation. Maintaining a reflexive diary/journal is a widely recognized way to foster reflexivity. According to Creswell, “Reflexivity increases the credibility of the study by enhancing more neutral interpretations.”[ 7 ]

Types of Qualitative Research Designs

The qualitative research approach encompasses a wide array of research designs. The words such as types, traditions, designs, strategies of inquiry, varieties, and methods are used interchangeably. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research.[ 1 , 7 , 10 ]

Narrative research

Narrative research focuses on exploring the life of an individual and is ideally suited to tell the stories of individual experiences.[ 17 ] The purpose of narrative research is to utilize 'story telling' as a method in communicating an individual's experience to a larger audience.[ 18 ] The roots of narrative inquiry extend to humanities including anthropology, literature, psychology, education, history, and sociology. Narrative research encompasses the study of individual experiences and learning the significance of those experiences. The data collection procedures include mainly interviews, field notes, letters, photographs, diaries, and documents collected from one or more individuals. Data analysis involves the analysis of the stories or experiences through “re-storying of stories” and developing themes usually in chronological order of events. Rolls and Payne argued that narrative research is a valuable approach in health care research, to gain deeper insight into patient's experiences.[ 19 ]

Example: Karlsson et al . undertook a narrative inquiry to “explore how people with Alzheimer's disease present their life story.” Data were collected from nine participants. They were asked to describe about their life experiences from childhood to adulthood, then to current life and their views about the future life. [ 20 ]

Phenomenological research

Phenomenology is a philosophical tradition developed by German philosopher Edmond Husserl. His student Martin Heidegger did further developments in this methodology. It defines the 'essence' of individual's experiences regarding a certain phenomenon.[ 1 ] The methodology has its origin from philosophy, psychology, and education. The purpose of qualitative research is to understand the people's everyday life experiences and reduce it into the central meaning or the 'essence of the experience'.[ 21 , 22 ] The unit of analysis of phenomenology is the individuals who have had similar experiences of the phenomenon. Interviews with individuals are mainly considered for the data collection, though, documents and observations are also useful. Data analysis includes identification of significant meaning elements, textural description (what was experienced), structural description (how was it experienced), and description of 'essence' of experience.[ 1 , 7 , 21 ] The phenomenological approach is further divided into descriptive and interpretive phenomenology. Descriptive phenomenology focuses on the understanding of the essence of experiences and is best suited in situations that need to describe the lived phenomenon. Hermeneutic phenomenology or Interpretive phenomenology moves beyond the description to uncover the meanings that are not explicitly evident. The researcher tries to interpret the phenomenon, based on their judgment rather than just describing it.[ 7 , 21 , 22 , 23 , 24 ]

Example: A phenomenological study conducted by Cornelio et al . aimed at describing the lived experiences of mothers in parenting children with leukemia. Data from ten mothers were collected using in-depth semi-structured interviews and were analyzed using Husserl's method of phenomenology. Themes such as “pivotal moment in life”, “the experience of being with a seriously ill child”, “having to keep distance with the relatives”, “overcoming the financial and social commitments”, “responding to challenges”, “experience of faith as being key to survival”, “health concerns of the present and future”, and “optimism” were derived. The researchers reported the essence of the study as “chronic illness such as leukemia in children results in a negative impact on the child and on the mother.” [ 25 ]

Grounded Theory Research

Grounded theory has its base in sociology and propagated by two sociologists, Barney Glaser, and Anselm Strauss.[ 26 ] The primary purpose of grounded theory is to discover or generate theory in the context of the social process being studied. The major difference between grounded theory and other approaches lies in its emphasis on theory generation and development. The name grounded theory comes from its ability to induce a theory grounded in the reality of study participants.[ 7 , 27 ] Data collection in grounded theory research involves recording interviews from many individuals until data saturation. Constant comparative analysis, theoretical sampling, theoretical coding, and theoretical saturation are unique features of grounded theory research.[ 26 , 27 , 28 ] Data analysis includes analyzing data through 'open coding,' 'axial coding,' and 'selective coding.'[ 1 , 7 ] Open coding is the first level of abstraction, and it refers to the creation of a broad initial range of categories, axial coding is the procedure of understanding connections between the open codes, whereas selective coding relates to the process of connecting the axial codes to formulate a theory.[ 1 , 7 ] Results of the grounded theory analysis are supplemented with a visual representation of major constructs usually in the form of flow charts or framework diagrams. Quotations from the participants are used in a supportive capacity to substantiate the findings. Strauss and Corbin highlights that “the value of the grounded theory lies not only in its ability to generate a theory but also to ground that theory in the data.”[ 27 ]

Example: Williams et al . conducted a grounded theory research to explore the nature of relationship between the sense of self and the eating disorders. Data were collected form 11 women with a lifetime history of Anorexia Nervosa and were analyzed using the grounded theory methodology. Analysis led to the development of a theoretical framework on the nature of the relationship between the self and Anorexia Nervosa. [ 29 ]

Ethnographic research

Ethnography has its base in anthropology, where the anthropologists used it for understanding the culture-specific knowledge and behaviors. In health sciences research, ethnography focuses on narrating and interpreting the health behaviors of a culture-sharing group. 'Culture-sharing group' in an ethnography represents any 'group of people who share common meanings, customs or experiences.' In health research, it could be a group of physicians working in rural care, a group of medical students, or it could be a group of patients who receive home-based rehabilitation. To understand the cultural patterns, researchers primarily observe the individuals or group of individuals for a prolonged period of time.[ 1 , 7 , 30 ] The scope of ethnography can be broad or narrow depending on the aim. The study of more general cultural groups is termed as macro-ethnography, whereas micro-ethnography focuses on more narrowly defined cultures. Ethnography is usually conducted in a single setting. Ethnographers collect data using a variety of methods such as observation, interviews, audio-video records, and document reviews. A written report includes a detailed description of the culture sharing group with emic and etic perspectives. When the researcher reports the views of the participants it is called emic perspectives and when the researcher reports his or her views about the culture, the term is called etic.[ 7 ]

Example: The aim of the ethnographic study by LeBaron et al . was to explore the barriers to opioid availability and cancer pain management in India. The researchers collected data from fifty-nine participants using in-depth semi-structured interviews, participant observation, and document review. The researchers identified significant barriers by open coding and thematic analysis of the formal interview. [ 31 ]

Historical research

Historical research is the “systematic collection, critical evaluation, and interpretation of historical evidence”.[ 1 ] The purpose of historical research is to gain insights from the past and involves interpreting past events in the light of the present. The data for historical research are usually collected from primary and secondary sources. The primary source mainly includes diaries, first hand information, and writings. The secondary sources are textbooks, newspapers, second or third-hand accounts of historical events and medical/legal documents. The data gathered from these various sources are synthesized and reported as biographical narratives or developmental perspectives in chronological order. The ideas are interpreted in terms of the historical context and significance. The written report describes 'what happened', 'how it happened', 'why it happened', and its significance and implications to current clinical practice.[ 1 , 10 ]

Example: Lubold (2019) analyzed the breastfeeding trends in three countries (Sweden, Ireland, and the United States) using a historical qualitative method. Through analysis of historical data, the researcher found that strong family policies, adherence to international recommendations and adoption of baby-friendly hospital initiative could greatly enhance the breastfeeding rates. [ 32 ]

Case study research

Case study research focuses on the description and in-depth analysis of the case(s) or issues illustrated by the case(s). The design has its origin from psychology, law, and medicine. Case studies are best suited for the understanding of case(s), thus reducing the unit of analysis into studying an event, a program, an activity or an illness. Observations, one to one interviews, artifacts, and documents are used for collecting the data, and the analysis is done through the description of the case. From this, themes and cross-case themes are derived. A written case study report includes a detailed description of one or more cases.[ 7 , 10 ]

Example: Perceptions of poststroke sexuality in a woman of childbearing age was explored using a qualitative case study approach by Beal and Millenbrunch. Semi structured interview was conducted with a 36- year mother of two children with a history of Acute ischemic stroke. The data were analyzed using an inductive approach. The authors concluded that “stroke during childbearing years may affect a woman's perception of herself as a sexual being and her ability to carry out gender roles”. [ 33 ]

Sampling in Qualitative Research

Qualitative researchers widely use non-probability sampling techniques such as purposive sampling, convenience sampling, quota sampling, snowball sampling, homogeneous sampling, maximum variation sampling, extreme (deviant) case sampling, typical case sampling, and intensity sampling. The selection of a sampling technique depends on the nature and needs of the study.[ 34 , 35 , 36 , 37 , 38 , 39 , 40 ] The four widely used sampling techniques are convenience sampling, purposive sampling, snowball sampling, and intensity sampling.

Convenience sampling

It is otherwise called accidental sampling, where the researchers collect data from the subjects who are selected based on accessibility, geographical proximity, ease, speed, and or low cost.[ 34 ] Convenience sampling offers a significant benefit of convenience but often accompanies the issues of sample representation.

Purposive sampling

Purposive or purposeful sampling is a widely used sampling technique.[ 35 ] It involves identifying a population based on already established sampling criteria and then selecting subjects who fulfill that criteria to increase the credibility. However, choosing information-rich cases is the key to determine the power and logic of purposive sampling in a qualitative study.[ 1 ]

Snowball sampling

The method is also known as 'chain referral sampling' or 'network sampling.' The sampling starts by having a few initial participants, and the researcher relies on these early participants to identify additional study participants. It is best adopted when the researcher wishes to study the stigmatized group, or in cases, where findings of participants are likely to be difficult by ordinary means. Respondent ridden sampling is an improvised version of snowball sampling used to find out the participant from a hard-to-find or hard-to-study population.[ 37 , 38 ]

Intensity sampling

The process of identifying information-rich cases that manifest the phenomenon of interest is referred to as intensity sampling. It requires prior information, and considerable judgment about the phenomenon of interest and the researcher should do some preliminary investigations to determine the nature of the variation. Intensity sampling will be done once the researcher identifies the variation across the cases (extreme, average and intense) and picks the intense cases from them.[ 40 ]

Deciding the Sample Size

A-priori sample size calculation is not undertaken in the case of qualitative research. Researchers collect the data from as many participants as possible until they reach the point of data saturation. Data saturation or the point of redundancy is the stage where the researcher no longer sees or hears any new information. Data saturation gives the idea that the researcher has captured all possible information about the phenomenon of interest. Since no further information is being uncovered as redundancy is achieved, at this point the data collection can be stopped. The objective here is to get an overall picture of the chronicle of the phenomenon under the study rather than generalization.[ 1 , 7 , 41 ]

Data Collection in Qualitative Research

The various strategies used for data collection in qualitative research includes in-depth interviews (individual or group), focus group discussions (FGDs), participant observation, narrative life history, document analysis, audio materials, videos or video footage, text analysis, and simple observation. Among all these, the three popular methods are the FGDs, one to one in-depth interviews and the participant observation.

FGDs are useful in eliciting data from a group of individuals. They are normally built around a specific topic and are considered as the best approach to gather data on an entire range of responses to a topic.[ 42 Group size in an FGD ranges from 6 to 12. Depending upon the nature of participants, FGDs could be homogeneous or heterogeneous.[ 1 , 14 ] One to one in-depth interviews are best suited to obtain individuals' life histories, lived experiences, perceptions, and views, particularly while exporting topics of sensitive nature. In-depth interviews can be structured, unstructured, or semi-structured. However, semi-structured interviews are widely used in qualitative research. Participant observations are suitable for gathering data regarding naturally occurring behaviors.[ 1 ]

Data Analysis in Qualitative Research

Various strategies are employed by researchers to analyze data in qualitative research. Data analytic strategies differ according to the type of inquiry. A general content analysis approach is described herewith. Data analysis begins by transcription of the interview data. The researcher carefully reads data and gets a sense of the whole. Once the researcher is familiarized with the data, the researcher strives to identify small meaning units called the 'codes.' The codes are then grouped based on their shared concepts to form the primary categories. Based on the relationship between the primary categories, they are then clustered into secondary categories. The next step involves the identification of themes and interpretation to make meaning out of data. In the results section of the manuscript, the researcher describes the key findings/themes that emerged. The themes can be supported by participants' quotes. The analytical framework used should be explained in sufficient detail, and the analytic framework must be well referenced. The study findings are usually represented in a schematic form for better conceptualization.[ 1 , 7 ] Even though the overall analytical process remains the same across different qualitative designs, each design such as phenomenology, ethnography, and grounded theory has design specific analytical procedures, the details of which are out of the scope of this article.

Computer-Assisted Qualitative Data Analysis Software (CAQDAS)

Until recently, qualitative analysis was done either manually or with the help of a spreadsheet application. Currently, there are various software programs available which aid researchers to manage qualitative data. CAQDAS is basically data management tools and cannot analyze the qualitative data as it lacks the ability to think, reflect, and conceptualize. Nonetheless, CAQDAS helps researchers to manage, shape, and make sense of unstructured information. Open Code, MAXQDA, NVivo, Atlas.ti, and Hyper Research are some of the widely used qualitative data analysis software.[ 14 , 43 ]

Reporting Guidelines

Consolidated Criteria for Reporting Qualitative Research (COREQ) is the widely used reporting guideline for qualitative research. This 32-item checklist assists researchers in reporting all the major aspects related to the study. The three major domains of COREQ are the 'research team and reflexivity', 'study design', and 'analysis and findings'.[ 44 , 45 ]

Critical Appraisal of Qualitative Research

Various scales are available to critical appraisal of qualitative research. The widely used one is the Critical Appraisal Skills Program (CASP) Qualitative Checklist developed by CASP network, UK. This 10-item checklist evaluates the quality of the study under areas such as aims, methodology, research design, ethical considerations, data collection, data analysis, and findings.[ 46 ]

Ethical Issues in Qualitative Research

A qualitative study must be undertaken by grounding it in the principles of bioethics such as beneficence, non-maleficence, autonomy, and justice. Protecting the participants is of utmost importance, and the greatest care has to be taken while collecting data from a vulnerable research population. The researcher must respect individuals, families, and communities and must make sure that the participants are not identifiable by their quotations that the researchers include when publishing the data. Consent for audio/video recordings must be obtained. Approval to be in FGDs must be obtained from the participants. Researchers must ensure the confidentiality and anonymity of the transcripts/audio-video records/photographs/other data collected as a part of the study. The researchers must confirm their role as advocates and proceed in the best interest of all participants.[ 42 , 47 , 48 ]

Rigor in Qualitative Research

The demonstration of rigor or quality in the conduct of the study is essential for every research method. However, the criteria used to evaluate the rigor of quantitative studies are not be appropriate for qualitative methods. Lincoln and Guba (1985) first outlined the criteria for evaluating the qualitative research often referred to as “standards of trustworthiness of qualitative research”.[ 49 ] The four components of the criteria are credibility, transferability, dependability, and confirmability.

Credibility refers to confidence in the 'truth value' of the data and its interpretation. It is used to establish that the findings are true, credible and believable. Credibility is similar to the internal validity in quantitative research.[ 1 , 50 , 51 ] The second criterion to establish the trustworthiness of the qualitative research is transferability, Transferability refers to the degree to which the qualitative results are applicability to other settings, population or contexts. This is analogous to the external validity in quantitative research.[ 1 , 50 , 51 ] Lincoln and Guba recommend authors provide enough details so that the users will be able to evaluate the applicability of data in other contexts.[ 49 ] The criterion of dependability refers to the assumption of repeatability or replicability of the study findings and is similar to that of reliability in quantitative research. The dependability question is 'Whether the study findings be repeated of the study is replicated with the same (similar) cohort of participants, data coders, and context?'[ 1 , 50 , 51 ] Confirmability, the fourth criteria is analogous to the objectivity of the study and refers the degree to which the study findings could be confirmed or corroborated by others. To ensure confirmability the data should directly reflect the participants' experiences and not the bias, motivations, or imaginations of the inquirer.[ 1 , 50 , 51 ] Qualitative researchers should ensure that the study is conducted with enough rigor and should report the measures undertaken to enhance the trustworthiness of the study.

Conclusions

Qualitative research studies are being widely acknowledged and recognized in health care practice. This overview illustrates various qualitative methods and shows how these methods can be used to generate evidence that informs clinical practice. Qualitative research helps to understand the patterns of health behaviors, describe illness experiences, design health interventions, and develop healthcare theories. The ultimate strength of the qualitative research approach lies in the richness of the data and the descriptions and depth of exploration it makes. Hence, qualitative methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

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