qualitative research in management methods and experiences

Qualitative research in management : methods and experiences

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• Preface Acknowledgements I: PHILOSOPHY OF QUALITATIVE RESEARCH Qualitative Research: An Introduction - Rajen K Gupta and Richa Awasthy On Becoming a Qualitative Researcher - Richa Awasthy II: EXPERIENCES AND METHODS Phenomenology: Qualitative Research-An Odyssey of Discovery - Tara Shankar Basu Semiotics: Doing an Emic Research the "Semiotic" Way-Experiences and Challenges - Sumita Mishra Grounded Theory: My PhD Journey-Finding a Method to the Madness - Twisha Anand Quasi-Ethnography: Methodological Design for Exploring Knowledge Creation in Organizations - Anjan Roy Single Case Study: A Promenade Down the Memory Boulevard - Shalini Rahul Tiwari Single Case Study: Exploring Organizational Ambidexterity-My Journey As a Qualitative Researcher - Margie Parikh Multiple Case Study: From Research Problem to Research Design in a Doctoral Setting-A Student's Experiential Musings - Swanand J Deodhar Multiple Case Study: My Journey-From Pure Quantitative Research to Mixed Research, and Then from Mixed Research to Pure Qualitative Research - Devendra Kumar Punia Mixed Methodology: Researching at Any Cost-Restorying My Journey into the "Unknown" - Abinash Panda Mixed Methodology: Use of Qualitative and Mixed Methods Research to Understand and Explore Organizational Phenomena in 21st Century-Reflecting on Personal Experience as a "Research Scholar" - Anita Ollapally III: CONCLUSION The Churning Process: Insights from the Experiences - Richa Awasthy and Rajen K Gupta Index.
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Qualitative designs and methodologies for business, management, and organizational research.

• Robert P. Gephart Robert P. Gephart Alberta School of Business, University of Alberta
•  and  Rohny Saylors Rohny Saylors Carson College of Business, Washington State University
• https://doi.org/10.1093/acrefore/9780190224851.013.230
• Published online: 28 September 2020

Qualitative research designs provide future-oriented plans for undertaking research. Designs should describe how to effectively address and answer a specific research question using qualitative data and qualitative analysis techniques. Designs connect research objectives to observations, data, methods, interpretations, and research outcomes. Qualitative research designs focus initially on collecting data to provide a naturalistic view of social phenomena and understand the meaning the social world holds from the point of view of social actors in real settings. The outcomes of qualitative research designs are situated narratives of peoples’ activities in real settings, reasoned explanations of behavior, discoveries of new phenomena, and creating and testing of theories.

A three-level framework can be used to describe the layers of qualitative research design and conceptualize its multifaceted nature. Note, however, that qualitative research is a flexible and not fixed process, unlike conventional positivist research designs that are unchanged after data collection commences. Flexibility provides qualitative research with the capacity to alter foci during the research process and make new and emerging discoveries.

The first or methods layer of the research design process uses social science methods to rigorously describe organizational phenomena and provide evidence that is useful for explaining phenomena and developing theory. Description is done using empirical research methods for data collection including case studies, interviews, participant observation, ethnography, and collection of texts, records, and documents.

The second or methodological layer of research design offers three formal logical strategies to analyze data and address research questions: (a) induction to answer descriptive “what” questions; (b) deduction and hypothesis testing to address theory oriented “why” questions; and (c) abduction to understand questions about what, how, and why phenomena occur.

The third or social science paradigm layer of research design is formed by broad social science traditions and approaches that reflect distinct theoretical epistemologies—theories of knowledge—and diverse empirical research practices. These perspectives include positivism, interpretive induction, and interpretive abduction (interpretive science). There are also scholarly research perspectives that reflect on and challenge or seek to change management thinking and practice, rather than producing rigorous empirical research or evidence based findings. These perspectives include critical research, postmodern research, and organization development.

Three additional issues are important to future qualitative research designs. First, there is renewed interest in the value of covert research undertaken without the informed consent of participants. Second, there is an ongoing discussion of the best style to use for reporting qualitative research. Third, there are new ways to integrate qualitative and quantitative data. These are needed to better address the interplay of qualitative and quantitative phenomena that are both found in everyday discourse, a phenomenon that has been overlooked.

• qualitative methods
• research design
• methods and methodologies
• interpretive induction
• interpretive science
• critical theory
• postmodernism
• organization development

Introduction

Qualitative research uses linguistic symbols and stories to describe and understand actual behavior in real settings (Denzin & Lincoln, 1994 ). Understanding requires describing “specific instances of social phenomena” (Van Maanen, 1998 , p. xi) to determine what this behavior means to lay participants and to scientific researchers. This process produces “narratives-non-fiction division that link events to events in storied or dramatic fashion” to uncover broad social science principles at work in specific cases (p. xii).

A research design and/or proposal is often created at the outset of research to act as a guide. But qualitative research is not a rule-governed process and “no one knows” the rules to write memorable and publishable qualitative research (Van Maanen, 1998 , p. xxv). Thus qualitative research “is anything but standardized, or, more tellingly, impersonal” (p. xi). Design is emergent and is often created as it is being done.

Qualitative research is also complex. This complexity is addressed by providing a framework with three distinct layers of knowledge creation resources that are assembled during qualitative research: the methods layer, the logic layer, and the paradigmatic layer. Research methods are addressed first because “there is no necessary connection between research strategies and methods of data collection and analysis” (Blaikie, 2010 , p. 227). Research methods (e.g., interviews) must be adapted for use with the specific logical strategies and paradigmatic assumptions in mind.

The first, or methods, layer uses qualitative methods to “collect data.” That is, to observe phenomena and record written descriptions of observations, often through field notes. Established methods for description include participant and non-participant observation, ethnography, focus groups, individual interviews, and collection of documentary data. The article explains how established methods have been adapted and used to answer a range of qualitative research questions.

The second, or logic, layer involves selecting a research strategy—a “logic, or set of procedures, for answering research questions” (Blaikie, 2010 , p. 18). Research strategies link research objectives, data collection methods, and logics of analysis. The three logical strategies used in qualitative organizational research are inductive logic, deductive logic and abductive logic (Blaikie, 2010 , p. 79). 1 Each logical strategy makes distinct assumptions about the nature of knowledge (epistemology), the nature of being (ontology), and how logical strategies and assumptions are used in data collection and analysis. The task is to describe important methods suitable for each logical strategy, factors to consider when selecting methods (Blaikie, 2010 ), and illustrates how data collection and analysis methods are adapted to ensure for consistency with specific logics and paradigms.

The third, or paradigms, layer of research design addresses broad frameworks and scholarly traditions for understanding research findings. Commitment to a paradigm or research tradition entails commitments to theories, research strategies, and methods. Three paradigms that do empirical research and seek scientific knowledge are addressed first: positivism, interpretive induction, and interpretive abduction. Then, three scholarly and humanist approaches that critique conventional research and practice to encourage organizational change are discussed: critical theory and research, postmodern perspectives, and organization development (OD). Paradigms or traditions provide broad scholarly contexts that make specific studies comprehensible and meaningful. Lack of grounding in an intellectual tradition limits the ability of research to contribute: contributions always relate to advancing the state of knowledge in specific unfolding research traditions that also set norms for assessing research quality. The six research designs are explained to show how consistency in design levels can be achieved for each of the different paradigms. Further, qualitative research designs must balance the need for a clear plan to achieve goals with the need for adaptability and flexibility to incorporate insights and overcome obstacles that emerge during research.

Our general goal has been to provide a practical guide to inspire and assist readers to better understand, design, implement, and publish qualitative research. We conclude by addressing future challenges and trends in qualitative research.

The Substance of Research Design

A research design is a written text that can be prepared prior to the start of a research project (Blaikie, 2010 , p. 4) and shared or used as “a private working document.” Figure 1 depicts the elements of a qualitative research design and research process. Interest in a topic or problem leads researchers to pose questions and select relevant research methods to fulfill research purposes. Implementation of the methods requires use of logical strategies in conjunction with paradigms of research to specify concepts, theories, and models. The outcomes, depending on decisions made during research, are scientific knowledge, scholarly (non-scientific) knowledge, or applied knowledge useful for practice.

Figure 1. Elements of qualitative research design.

Research designs describe a problem or research question and explain how to use specific qualitative methods to collect and analyze qualitative data that answer a research question. The purposes of design are to describe and justify the decisions made during the research process and to explain how the research outcomes can be produced. Designs are thus future-oriented plans that specify research activities, connect activities to research goals and objectives, and explain how to interpret the research outcomes using paradigms and theories.

In contrast, a research proposal is “a public document that is used to obtain necessary approvals for a research proposal to proceed” (Blaikie, 2010 , p. 4). Research designs are often prepared prior to creating a research proposal, and research proposals often require the inclusion of research designs. Proposals also require greater formality when they are the basis for a legal contract between a researcher and a funding agency. Thus, designs and proposals are mutually relevant and have considerable overlap but are addressed to different audiences. Table 1 provides the specific features of designs and proposals. This discussion focuses on designs.

Table 1. Decisions Necessitated by Research Designs and Proposals

Source: Based on Blaikie ( 2010 ), pp. 12–34.

The “real starting point” for a research design (or proposal) is “the formulation of the research question” (Blaikie, 2010 , p. 17). There are three types of research questions: “what” questions seek descriptions; “why” questions seek answers and understanding; and “how” questions address conditions where certain events occur, underlying mechanisms, and conditions necessary for change interventions (p. 17). It is useful to start with research questions rather than goals, and to explain what the research is intended to achieve (p. 17) in a technical way.

The process of finding a topic and formulating a useful research question requires several considerations (Silverman, 2014 , pp. 31–33, 34–40). Researchers must avoid settings where data collection will be difficult (pp. 31–32); specify an appropriate scope for the topic—neither too wide or too narrow—that can be addressed (pp. 35–36); fit research questions into a relevant theory (p. 39); find the appropriate level of theory to address (p. 42); select appropriate designs and research methods (pp. 42–44); ensure the volume of data can be handled (p. 48); and do an effective literature review (p. 48).

A literature review is an important way to link the proposed research to current knowledge in the field, and to explain what was previously known or what theory suggests to be the case (Blaikie, 2010 , p. 17). Research questions can used to bound and frame the literature review while the literature review often inspires research questions. The review may also provide bases for creating new hypotheses and for answering some of the initial research questions (Blaikie, 2010 , p. 18).

Layers of Research Design

There are three layers of research design. The first layer focuses on research methods for collecting data. The second layer focuses on the logical frameworks used for analyzing data. The third layer focuses on the paradigm used to create a coherent worldview from research methods and logical frameworks.

Layer One: Design as Research Methods

Qualitative research addresses the meanings people have for phenomena. It collects narratives of organizational activity, uses analytical induction to create coherent representations of the truths and meanings in organizational contexts, and then creates explanations of this conduct and its prevalence (Van Maanan, 1998 , pp. xi–xii). Thus qualitative research involves “doing research with words” (Gephart, 2013 , title) in order to describe the linguistic symbols and stories that members use in specific settings.

There are four general methods for collecting qualitative data and creating qualitative descriptions (see Table 2 ). The in-depth case study approach provides a history of an event or phenomenon over time using multiple data sources. Observational strategies use the researcher to observe and describe behavior in actual settings. Interview strategies use a format where a researcher asks questions of an informant. And documentary research collects texts, documents, official records, photographs, and videos as data—formally written or visually recorded evidence that can be replayed and reviewed (Creswell, 2014 , p. 190). These methods are adapted to fit the needs of specific projects.

Table 2. Qualitative Data Collection Methods

The in-depth case study method.

The in-depth case study is a key strategy for qualitative research (Piekkari & Welch, 2012 ). It was the most common qualitative method used during the formative years of the field, from 1956 to 1965 , when 48% of qualitative papers published in the Administrative Science Quarterly used the case study method (Van Maanen, 1998 , p. xix). The case design uses one or more data collection strategies to describe in detail how a single event or phenomenon, selected by a researcher, has changed over time. This provides an understanding of the processes that underlie changes to the phenomenon. In-depth case study methods use observations, documents, records, and interviews that describe the events in the case unfolded and their implications. Case studies contextualize phenomena by studying them in actual situations. They provide rich insights into multiple dimensions of a single phenomenon (Campbell, 1975 ); offer empirical insights into what, how, and why questions related to phenomena; and assist in the creation of robust theory by providing diverse data collected over time (Gephart & Richardson, 2008 , p. 36).

Maniha and Perrow ( 1965 ) provide an example of a case study concerned with organizational goal displacement, an important issue in early organizational theorizing that proposed organizations emerge from rational goals. Organizational rationality was becoming questioned at the time that the authors studied a Youth Commission with nine members in a city of 70,000 persons (Maniha & Perrow, 1965 ). The organization’s activities were reconstructed from interviews with principals and stakeholders of the organization, minutes from Youth Commission meetings, documents, letters, and newspaper accounts (Maniha & Perrow, 1965 ).

The account that emerged from the data analysis is a history of how a “reluctant organization” with “no goals to guide it” was used by other aggressive organizations for their own ends. It ultimately created its own mission (Maniha & Perrow, 1965 ). Thus, an organization that initially lacked rational goals developed a mission through the irrational process of goal slippage or displacement. This finding challenged prevailing thinking at the time.

Observational Strategies

Observational strategies involve a researcher present in a situation who observes and records, the activities and conversations that occur in the setting, usually in written field notes. The three observational strategies in Table 2 —participant observation, ethnography, and systematic self-observation—differ in terms of the role of the researcher and in the data collection approach.

Participant observation . This is one of the earliest qualitative methods (McCall & Simmons, 1969 ). One gains access to a setting and an informant holding an appropriate social role, for example, client, customer, volunteer, or researcher. One then observes and records what occurs in the setting using field notes. Many features or topics in a setting can become a focus for participant observers. And observations can be conducted using continuum of different roles from the complete participant, observer as participant, and participant observer, to the complete observer who observes without participation (Creswell, 2014 , Table 9.2, p. 191).

Ethnography . An ethnography is “a written representation of culture” (Van Maanen, 1988 ) produced after extended participation in a culture. Ethnography is a form of participant observation that focuses on the cultural aspects of the group or organization under study (Van Maanen, 1988 , 2010 ). It involves prolonged and close contact with group members in a role where the observer becomes an apprentice to an informant to learn about a culture (Agar, 1980 ; McCurdy, Spradley, & Shandy, 2005 ; Spradley, 1979 ).

Ethnography produces fine-grained descriptions of a micro-culture, based on in-depth cultural participation (McCurdy et al., 2005 ; Spradley, 1979 , 2016 ). Ethnographic observations seek to capture cultural members’ worldviews (see Perlow, 1997 ; Van Maanen, 1988 ; Watson, 1994 ). Ethnographic techniques for interviewing informants have been refined into an integrated developmental research strategy—“the ethno-semantic method”—for undertaking qualitative research (Spradley, 1979 , 2016 ; Van Maanen, 1981 ). The ethnosemantic method uses a structured approach to uncover and confirm key cultural features, themes, and cultural reasoning processes (McCurdy et al., 2005 , Table 3 ; Spradley, 1979 ).

Systematic Self-Observation . Systematic self-observation (SSO) involves “training informants to observe and record a selected feature of their own everyday experience” (Rodrigues & Ryave, 2002 , p. 2; Rodriguez, Ryave, & Tracewell, 1998 ). Once aware that they are experiencing the target phenomenon, informants “immediately write a field report on their observation” (Rodrigues & Ryave, 2002 , p. 2) describing what was said and done, and providing background information on the context, thoughts, emotions, and relationships of people involved. SSO generates high-quality field notes that provide accurate descriptions of informants’ experiences (pp. 4–5). SSO allows informants to directly provide descriptions of their personal experiences including difficult to capture emotions.

Interview Strategies

Interviews are conversations between researchers and research participants—termed “subjects” in positivist research and informants in “interpretive research.” Interviews can be conducted as individual face-to-face interactions (Creswell, 2014 , p. 190) or by telephone, email, or through computer-based media. Two broad types of interview strategies are (a) the individual interview and (b) the group interview or focus group (Morgan, 1997 ). Interviews elicit informants’ insights into their culture and background information, and obtain answers and opinions. Interviews typically address topics and issues that occur outside the interview setting and at previous times. Interview data are thus reconstructions or undocumented descriptions of action in past settings (Creswell, 2014 , p. 191) that provide descriptions that are less accurate and valid descriptions than direct, real-time observations of settings.

Structured and unstructured interviews. Structured interviews pose a standardized set of fixed, closed-ended questions (Easterby-Smith, Thorpe, & Jackson, 2012 ) to respondents whose responses are recorded as factual information. Responses may be forced choice or open ended. However, most qualitative research uses unstructured or partially structured interviews that pose open-ended questions in a flexible order that can be adapted. Unstructured interviews allow for detailed responses and clarification of statements (Easterby-Smith et al., 2012 ; McLeod, 2014 )and the content and format can be tailored to the needs and assumptions of specific research projects (Gephart & Richardson, 2008 , p. 40).

The informant interview (Spradley, 1979 ) poses questions to informants to elicit and clarify background information about their culture, and to validate ethnographic observations. In interviews, informants teach the researcher their culture (Spradley, 1979 , pp. 24–39). The informant interview is part of a developmental research sequence (McCurdy et al., 2005 ; Spradley, 1979 ) that begins with broad “grand tour” questions that ask an informant to describe an important domain in their culture. The questions later narrow to focus on details of cultural domains and members’ folk concepts. This process uncovers semantic relationships among concepts of members and deeper cultural themes (McCurdy et al., 2005 ; Spradley, 1979 ).

The long interview (McCracken, 1988 ) involves a lengthy, quasi-structured interview sessions with informants to acquire rapid and efficient access to cultural themes and issues in a group. Long interviews differ ethnographic interviews by using a “more efficient and less obtrusive format” (p. 7). This creates a “sharply focused, rapid and highly intense interview process” that avoids indeterminate and redundant questions and pre-empts the need for observation or involvement in a culture. There are four stages in the long interview: (a) review literature to uncover analytical categories and design the interview; (b) review cultural categories to prepare the interview guide; (c) construct the questionnaire; and (d) analyze data to discover analytical categories (p. 30, fig. 1 ).

The active interview is a dynamic process where the researcher and informant co-construct and negotiate interview responses (Holstein & Gubrium, 1995 ). The goal is to uncover the subjective meanings that informants hold for phenomenon, and to understand how meaning is produced through communication. The active approach is common in interpretive, critical, and postmodern research that assumes a negotiated order. For example, Richardson and McKenna ( 2000 ) explored how ex-patriate British faculty members themselves interpreted and explained their expatriate experience. The researchers viewed the interview setting as one where the researchers and informants negotiated meanings between themselves, rather than a setting where prepared questions and answers were shared.

Documentary, Photographic, and Video Records as Data

Documents, records, artifacts, photographs, and video recordings are physically enduring forms of data that are separable from their producers and provide mute evidence with no inherent meaning until they are read, written about, and discussed (Hodder, 1994 , p. 393). Records (e.g., marriage certificate) attest to a formal transaction, are associated with formal governmental institutions, and may have legally restricted access. In contrast, documents are texts prepared for personal reasons with fewer legal restrictions but greater need for contextual interpretation. Several approaches to documentary and textual data analysis have been developed (see Table 3 ). Documents that researchers have found useful to collect include public documents and minutes of meetings; detailed transcripts of public hearings; corporate and government press releases; annual reports and financial documents; private documents such as diaries of informants; and news media reports.

Photographs and videos are useful for capturing “accurate” visual images of physical phenomena (Ray & Smith, 2012 ) that can be repeatedly reexamined and used as evidence to substantiate research claims (LeBaron, Jarzabkowski, Pratt, & Fetzer, 2018 ). Photos taken from different positions in space may also reveal different features of phenomena. Videos show movement and reveal activities as processes unfolding over time and space. Both photos and videos integrate and display the spatiotemporal contexts of action.

Layer Two: Design as Logical Frameworks

The second research design layer links data collection and analysis methods (Tables 2 and 3 ) to three logics of enquiry that answer specific questions: inductive, deductive, and abductive logical strategies (see Table 4 ). Each logical strategy focuses on producing different types of knowledge using distinctive research principles, processes, and types of research questions they can address.

Table 3. Data Analysis and Integrated Data Collection and Analysis Strategies

Table 4. logical strategies for answering qualitative research questions with evidence.

Based in part on Blaikie ( 1993 ), ch. 5 & 6; Blaikie ( 2010 ), p. 84, table 4.1

The Inductive Strategy

Induction is the scientific method for many scholars (Blaikie, 1993 , p. 134), and an essential logic for qualitative management research (Pratt, 2009 , p. 856). Inductive strategies ask “what” questions to explore a domain to discover unknown features of a phenomenon (Blaikie, 2010 , p. 83). There are four stages to the inductive strategy: (a) observe and record all facts without selection or anticipating their importance; (b) analyze, compare, and classify facts without employing hypotheses; (c) develop generalizations inductively based on the analyses; and (d) subject generalizations to further testing (Blaikie, 1993 , p. 137).

Inductive research assumes a real world outside human thought that can be directly sensed and described (Blaikie, 2010 ). Principles of inductive research reflect a realist and objectivist ontology. The selection, definition, and measurement of characteristics to be studied are developed from an objective, scientific point of view. Facts about organizational features need to be obtained using unbiased measurement. Further, the elimination method is used to find “the characteristics present in all the positive cases, which are absent in all the negative cases, and which vary in appropriate degrees” (Blaikie, 1993 , p. 135). This requires data collection methods that provide unbiased evidence of the objective facts without pre-supposing their importance.

Induction can establish limited generalizations about phenomena based solely on the observations collected. Generalizations need to be based on the entire sample of data, not on selected observations from large data sets, to establish their validity. The scope of generalization is limited to the sample of data itself. Induction creates evidence to increase our confidence in a conclusion, but the conclusions do not logically follow from premises (Blaikie, 1993 , p. 164). Indeed, inferences from induction cannot be extended beyond the original set of observations and no logical or formal process exists to establish the universality of inferences.

Key data collection methods for inductive designs include observational strategies that allow the researcher to view behavior without making a priori hypotheses, to describe behavior that occurs “naturally” in settings, and to record non-impressionistic descriptions of behavior. Interviews can also elicit descriptions of settings and behavior for inductive qualitative research. Data analysis methods need to describe actual interactions in real settings including discourse among members. These methods include ethnosemantic analysis to uncover key terms and validate actual meanings used by members; analyses of conversational practices that show how meaning is negotiated through sequential turn taking in discourse; and grounded theory-based concept coding and theory development that use the constant comparative method.

Facts or descriptions of events can be compared to one another and generalizations can be made about the world using induction (Blaikie, 2010 ). Outcomes from inductive analysis include descriptions of features in a limited domain of social action that are inferred to exist in other similar settings. Propositions and broader insights can be developed inductively from these descriptions.

The Deductive Strategy

Deductive logic (Blaikie, 1993 , 2010 ) addresses “why” questions to explain associations between concepts that represent phenomena of interest. Researchers can use induction, abduction, or any means, to develop then test the hypotheses to see if they are valid. Hypotheses that are not rejected are temporarily corroborated. The outcomes from deduction are tested hypotheses. Researchers can thus be very creative in hypothesis construction but they cannot discover new phenomena with deduction that is based only on phenomena known in advance (Blaikie, 2010 ). And there is also no purely logical or mechanical process to establish “the validity of [inductively constructed] universal statements from a set of singular statements” from which deductive hypotheses were formed (Hempel, 1966 , p. 15 cited in Blaikie, 1993 , p. 140).

The deductive strategy uses a realist and objectivist ontology and imitates natural science methods. Useful data collection methods include observation, interviewing, and collection of documents that contain facts. Deduction addresses the assumedly objective features of settings and interactions. Appropriate data analysis methods include content coding to identify different types, features, and frequencies of observed phenomena; grounded theory coding and analytical induction to create categories in data, determine how categories are interrelated, and induce theory from observations; and pattern recognition to compare current data to prior models and samples. Content analysis and non-parametric statistics can be used to quantify qualitative data and make it more amenable to analysis, although quantitative analysis of qualitative data is not, strictly speaking, qualitative research (Gephart, 2004 ).

The Abductive Strategy

Abduction is “the process used to produce social scientific accounts of social life by drawing on the concepts and meanings used by social actors, and the activities in which they engage” (Blaikie, 1993 , p. 176). Abductive reasoning assumes that the socially meaningful world is the world experienced by members. The first abductive task is to discover the insider view that is basic to the actions of social actors (p. 176) by uncovering the subjective meanings held by social actors. Subjective meaning (Schutz, 1973a , 1973b ) refers to the meaning that actions hold for the actors themselves and that they can express verbally. Subjective meaning is not inexpressible ideas locked in one’s mind. Abduction starts with lay descriptions of social life, then moves to technical, scientific descriptions of social life (Blaikie, 1993 , p. 177) (see Table 4 ). Abduction answers “what” questions with induction, why questions with deduction, and “how” questions with hypothesized processes that explain how, and under what conditions, phenomena occur. Abduction involves making a logical leap that infers an explanatory process to explain an outcome in an oscillating logic. Deductive, inductive, and inferential processes move recursively from actors’ accounts to social science accounts and back again in abduction (Gephart, 2018 ). This process enables all theory and second-order scientific concepts to be grounded in actors’ first-order meanings.

The abductive strategy contains four layers: (a) everyday concepts and meanings of actors, used for (b) social interaction, from which (c) actors provide accounts, from which (d) social scientific descriptions are made, or theories are generated and applied, to interpret phenomena (Blaikie, 1993 , p. 177). The multifaceted research process, described in Table 4 , requires locating and comprehending members’ important everyday concepts and theories before observing or creating disruptions that force members to explain the unstated knowledge behind their action. The researcher then integrates members’ first-order concepts into a general, second-order scientific theory that makes first-order understandings recoverable.

Abduction emerged from Weber’s interpretive sociology ( 1978 ) and Peirce’s ( 1936 ) philosophy. But Alfred Schutz ( 1973a , 1973b ) is the contemporary scholar who did the most to extend our understanding of abduction, although he never used the term “abduction” (Blaikie, 1993 , 2010 ; Gephart, 2018 ). Schutz conceived abduction as an approach to verifiable interpretive knowledge that is scientific and rigorous (Blaikie, 1993 ; Gephart, 2018 ). Abduction is appropriate for research that seeks to go beyond description to explanation and prediction (Blaikie, 1993 , p. 163) and discovery (Gephart, 2018 ). It employs an interpretive ontology (Schutz, 1973a , 1973b ) and social constructionist epistemology (Berger & Luckmann, 1966 ), using qualitative methods to discover “why people do what they do” (Blaikie, 1993 ).

Dynamic data collection methods are needed for abductive research to capture descriptions of interactions in actual settings and their meanings to members. Observational and interview approaches that elicit members’ concepts and theories are particularly relevant to abductive understanding (see Table 2 ). Data analysis methods must analyze situated, first-order (common sense) discourse as it unfolds in real settings and then systematically develop second-order concepts or theories from data. Relevant approaches to produce and validate findings include ethnography, ethnomethodology, and grounded theorizing (see Table 3 ). The combination of what, why, and how questions used in abduction produces a broader understanding of phenomena than do what and why deductive and inductive questions.

Layer Three: Paradigms of Research

Scholarly paradigms integrate methods, logics, and intellectual worldviews into coherent theoretical perspectives and form the most abstract level of research design. Six paradigms are widely used in management research (Burrell & Morgan, 1979 ; Cunliffe, 2011 ; Gephart, 2004 , 2013 ; Gephart & Richardson, 2008 ; Hassard, 1993 ). The first three perspectives—positivism, interpretive induction, and interpretive abduction—build on logics of design and seek to produce rigorous empirical research that constitutes evidence (see Table 5 ). Three additional perspectives pursue philosophical, critical, and practical knowledge: critical theory, postmodernism, and organization development (see Table 6 ). Tables 5 and 6 describe important features of each research design to show similarities and differences in the processes through which theoretical meaning is bestowed on research results in management and organization studies.

Table 5. Paradigms, Logical Strategies, and Methodologies for Empirical Research

Sources: Based on and adapted and extended from Blaikie ( 1993 , pp. 137, 145, & 152); Blaikie ( 2010 , Table 4.1, p. 84); Gephart ( 2013 , Table 9.1, p. 291) and Gephart ( 2018 , Table 3.1, pp. 38–39).

Table 6. Alternative Paradigms, Logical Strategies, and Methodologies

Based in part on Gephart ( 2004 , 2013 , 2018 ).

The Positivist Approach

The qualitative positivist approach makes assumptions equivalent to those of quantitative research (Gephart, 2004 , 2018 ). It assumes the world is objectively describable and comprehensible using inductive and deductive logics. And rigor is important and achieved by reliability, validity, and generalizability of findings (Kirk & Miller, 1986 ; Malterud, 2001 ). Qualitative positivism mimics natural science logics and methods using data recorded as words and talk rather than numerals.

Positivist research (Bitektine, 2008 ; Su, 2018 ) starts with a hypothesis. This can, but need not, be based in data or inductive theory. The research process, aimed at publication in peer-reviewed journals, requires researchers to (a) identify variables to measure, (b) develop operational definitions of the variables, (c) measure (describe) the variables and their inter-relationships, (d) pose hypotheses to test relationships among variables, then (e) compare observations to hypotheses for testing (Blaikie, 2010 ). When data are consistent with theory, theory passes the test. Otherwise the theory fails. This theory is also assessed for its logical correctness and value for knowledge. The positivist approach can assess deductive and inductive generalizations and provide evidence concerning why something occurs—if proposed hypotheses are not rejected.

Positivists view qualitative research as highly subject to biases that must be prevented to ensure rigor, and 23 methodological steps are recommended to enhance rigor and prevent bias (Gibbert & Ruigrok, 2010 , p. 720). Replicability is another concern because methodology descriptions in qualitative publications “insufficiently describe” how methods are used (Lee, Mitchell, & Sablynski, 1999 , p. 182) and thereby prevent replication. To ensure replicability, a qualitative “article’s description of the method must be sufficiently detailed to allow a reader . . . to replicate that reported study either in a hypothetical or actual manner.”

Qualitative research allows positivists to observe naturally unfolding behavior in real settings and allow “the real world” of work to inform research and theory (Locke & Golden-Biddle, 2004 ). Encounters with the actual world provide insights into meaning construction by members that cannot be captured with outsider (etic) approaches. For example, past quantitative research provided inconsistent findings on the importance of pre- and post-recruitment screening interviews for job choices of recruits. A deeper investigation was thus designed to examine how recruitment impacts job selection (Rynes, Bretz, & Gerhart, 1991 ). To do so, students undergoing recruitment were asked to “tell us in their own words” how their recruiting and decision processes unfolded (Rynes et al., 1991 , p. 399). Using qualitative evidence, the researchers found that, in contrast to quantitative findings, “people do make choices based on how they are treated” (p. 509), and the choices impact recruitment outcomes. Rich descriptions of actual behavior can disconfirm quantitative findings and produce new findings that move the field forward.

An important limitation of positivism is its common emphasis on outsiders’ or scientific observers’ objective conceptions of the world. This limits the attention positivist research gives to members’ knowledge and allows positivist research to impose outsiders’ meanings on members’ everyday behavior, leading to a lack of understanding of what the behavior means to members. Another limitation is that no formal, logical, or proven techniques exist to assess the strength of “relationships” among qualitative variables, although such assessments can be formally done using well-formed quantitative data and techniques. Thus, qualitative positivists often provide ambiguous or inexplicit quantitative depictions of variable relations (e.g., “strong relationship”). Alternatively, the analysts quantify qualitative data by assigning numeric codes to categories (Greckhamer, Misngyi, Elms, & Lacey, 2008 ), using non-parametric statistics, or quantitative content analysis (Sonpar & Golden-Biddle, 2008 ) to create numerals that depict associations among variables.

An illustrative example of positivist research . Cole ( 1985 ) studied why and how organizations change their working structures from bureaucratic forms to small, self-supervised work teams that allow for worker participation in shop floor activities. Cole found that existing research on workplace change focused on the micropolitical level of organizations. He hypothesized that knowledge could be advanced differently, by examining the macropolitical change in industries or nations. Next, a testable conclusion was deduced: a macro analysis of the politics of change can better predict the success of work team implementation, measured as the spread of small group work structures, than an examination of the micropolitics of small groups ( 1985 ). Three settings were selected for the research: Japan, Sweden, and the United States. Japanese data were collected from company visits and interviews with employment officials and union leaders. Swedish documentary data on semiautonomous work groups were used and supplemented by interviews at Volvo and Saab, and prior field research in Sweden. U.S. data were collected through direct observations and a survey of early quality circle adopters.

Extensive change was observed in Sweden and Japan but changes to small work groups were limited in the United States (Cole, 1985 ). This conclusion was verified using records of the experiences of the three nations in work reform, compared across four dimensions: timing and scope of changes, managerial incentives to innovate, characteristics of mobilization, and political dimensions of change. Data revealed the United States had piecemeal experimentation and resistance to reform through the 1970s; diffusion emerged in Japan in the early 1960s and became extensive; and Swedish workplace reform started in the 1960s and was widely and rapidly diffused.

Cole then answered the questions of “why” and “how” the change occurred in some countries but not others. Regarding why Japanese and Swedish managers were motivated to introduce workplace change due to perceived managerial problems and the changing national labor market. Differences in the political processes also influenced change. Management, labor, and government interest in workplace change was evident in Japan and Sweden but not in the United States where widespread resistance occurred. As to how, the change occurred through macropolitical processes (Cole, 1985 , p. 120), specifically, the commitment of the national business leadership to the change and whether or not the change was contested or uncontested by labor impacted the adoption of change. Organizational change usually occurs through broad macropolitical processes, hence “the importance of macro-political variables in explaining these outcomes” (p. 122).

Interpretive Induction

Two streams of qualitative research claim the label of “interpretive research” in management and organization studies. The first stream, interpretive induction, emphasizes induction as its primary logical strategy (e.g., Locke, 2001 , 2002 ; Pratt, 2009 ). It assumes a “real world” that is inherently objective but interpreted through subjective lenses, hence different people can perceive or report different things. This research is interpretive because it addresses the meanings and interpretations people give to organizational phenomena, and how this meaning is provided and used. Interpretive induction contributes to scientific knowledge by providing empirical descriptions, generalizations, and low-level theories about specific contexts based on thick descriptions of members’ settings and interactions (first-order understandings) as data.

The interpretive induction paradigm addresses “what” questions that describe and explain the existence and features of phenomena. It seeks to uncover the subjective, personal knowledge that subjects have of the objective world and does so by creating descriptive accounts of the activities of organizational members. Interpretive induction creates inductive theories based on limited samples that provide low-scope, abstract theory. Limitations (Table 5 ) include the fact that inductive generalizations are limited to the sample used for induction and need to be subjected to additional tests and comparisons for substantiation. Second, research reports often fail to provide details to allow replication of the research. Third, formal methods for assessing the accuracy and validity of results and findings are limited. Fourth, while many features of scientific research are evident in interpretive induction research, the research moves closer to humanistic knowledge than to science when the basic assumptions of inductive analysis are relaxed—a common occurrence.

An illustrative example of interpretive induction research . Adler and Adler ( 1988 , 1998 ) undertook a five-year participant-observation study of a college basketball program (Adler, 1998 , p. 32). They sought to “examine the development of intense loyalty in one organization.” Intense loyalty evokes “devotional commitment of . . . (organizational) members through a subordination that sometime borders on subservience” (p. 32). The goal was to “describe and analyze the structural factors that emerged as most related” to intense loyalty (p. 32).

The researchers divided their roles. Peter Adler was the active observer and “expert” who undertook direct observations while providing counsel to players (p. 33). Patricia Adler took the peripheral role of “wife” and debriefed the observer. Two research questions were posed: (a) “what” kinds of organizational characteristics foster intense loyalty? (b) “how” do organizations with intense loyalty differ structurally from those that lack intense loyalty?

The first design stage (Table 5 ) recorded unbiased observations in extensive field notes. Detailed “life history” accounts were obtained from 38 team members interviewed (Adler & Adler, 1998 , p. 33). Then analytical induction and the constant comparative method (Glaser & Strauss, 1967 ) were used to classify and compare observations (p. 33). Once patterns emerged, informants were questioned about variations in patterns (p. 34) to develop “total patterns” (p. 34) reflecting the collective belief system of the group. This process required a “careful and rigorous means of data collection and analysis” that was “designed to maximize both the reliability and validity of our findings” (p. 34). The study found five conceptual elements were essential to the development of intense loyalty: domination, identification, commitment, integration, and goal alignment (p. 35).

The “what” question was answered by inducing a generalization (stage 3): paternalistic organizations with charismatic leadership seek people who “fit” the organization’s style and these people require extensive socialization to foster intense loyalty. This description contrasts with rational bureaucratic organizations that seek people who fit specific, generally known job descriptions and require limited socialization (p. 46). The “how” question is answered by inductive creation of another generalization: organizations that control the extra-organizational activities of members are more likely to evoke intense loyalty by forcing members to subordinate all other interests to those of the organization (p. 46).

The Interpretive Abduction Approach

The second stream of interpretive research—interpretive abduction—produces scientific knowledge using qualitative methods (Gephart, 2018 ). The approach assumes that commonsense knowledge is foundational to how actors know the world. Abductive theory is scientifically built from, and refers to, everyday life meanings, in contrast to positivist and interpretive induction research that omits concern with the worldview of members. Further, interpretive abduction produces second-order or scientific theory and concepts from members’ first-order commonsense concepts and meanings (Gephart, 2018 , p. 34; Schutz, 1973a , 1973b ).

The research process, detailed in Table 5 (process and stages), focuses on collecting thick descriptive data on organizations, identifying and interpreting first-order lay concepts, and creating abstract second-order technical constructs of science. The second-order concepts describe the first-order principles and terms social actors use to organize their experience. They compose scientific concepts that form a theoretical system to objectively describe, predict, and explain social organization (Gephart, 2018 , p. 35). This requires researchers to understand the subjective view of the social actors they study, and to develop second-order theory based on actors’ subjective meanings. Subjective meaning can be shared with others through language use and communication and is not private knowledge.

A central analytical task for interpretive abduction is creating second-order, ideal-type models of social roles, motives, and interactions that describe the behavioral trajectories of typical actors. Ideal-type models can be objectively compared to one another and are the special devices that social science requires to address differences between social phenomena and natural phenomena (Schutz, 1973a , 1973b ). The models, once built, are refined to preserve actors’ subjective meanings, to be logically consistent, and to present human action from the actor’s point of view. Researchers can then vary and compare the models to observe the different outcomes that emerge. Scientific descriptions can then be produced, and theories can be created. Interpretive abduction (Gephart, 2018 , p. 35) allows one to addresses what, why, and how questions in a holistic manner, to describe relationships among scientific constructs, and to produce “empirically ascertainable” and verifiable relations among concepts (Schutz, 1973b , p. 65) that are logical, hold practical meaning to lay actors, and provide abstract, objective meaning to interpretive scientists (Gephart, 2018 , p. 35). Abduction produces knowledge about socially shared realities by observing interactions, uncovering members’ first-order meanings, and then developing technical second-order or scientific accounts from lay accounts.

Interpretive abduction (Gephart, 2018 ) uses well-developed methods to create, refine, test, and verify second-order models, and it provides well-developed tools to support technical, second-level analyses. Research using the interpretive abduction approach includes a study of how technology change impacts sales automobile practices (Barley, 2015 ) and an investigation study of how abduction was used to develop new prescription drugs (Dunne & Dougherty, 2016 ).

An illustrative example of the interpretive abduction approach . Perlow ( 1997 ) studied time management among software engineers facing a product launch deadline. Past research verified the widespread belief that long working hours for staff are necessary for organizational success. This belief has adversely impacted work life and led to the concept of a “time bind” faced by professionals (Hochschild, 1997 ). One research question that subsequently emerged was, “what underlies ‘the time bind’ experienced by engineers who face constant deadlines and work interruptions?” (Perlow, 1997 , p. xvii). This is an inductive question about the causes and consequences of long working hours not answered in prior research that is hard to address using induction or deduction. Perlow then explored assumption underlying the hypothesis, supported by lay knowledge and management literature, that even if long working hours cause professionals to destroy their life style, long work hours “further the goals of our organizations” and “maximize the corporation’s bottom line” (Perlow, 1997 , p. 2).

The research commenced (Table 5 , step 1) when Perlow gained access to “Ditto,” a leader in implementing flexible work policies (Perlow, 1997 , p. 141) and spent nine months doing participant observation four days a week. Perlow collected descriptive data by walking around to observe and converse with people, attended meetings and social events, interviewed engineers at work and home and spouses at home, asked participants to record activities they undertook on selected working days (Perlow, 1997 , p. 143), and made “thousands of pages of field notes” (p. 146) to uncover trade-offs between work and home life.

Perlow ( 1997 , pp. 146–147) analyzed first-order concepts uncovered through his observations and interviews from 17 stories he wrote for each individual he had studied. The stories described workstyles, family lives, and traits of individuals; provided objective accounts of subjective meanings each held for work and home; offered background information; and highlighted first-order concepts. Similarities and differences in informant accounts were explored with an empirically grounded scheme for coding observations into categories using grounded theory processes (Gioia, Corley, & Hamilton, 2012 ). The process allowed Perlow to find key themes in stories that show work patterns and perceptions of the requirements of work success, and to create ideal-type models of workers (step 3). Five stories were selected for detailed analysis because they reveal important themes Perlow ( 1997 , p. 147). For example, second-order, ideal-type models of different “roles” were constructed in step 3 including the “organizational superstar” (pp. 15–21) and “ideal female employee” (pp. 22–32) based on first-order accounts of members. The second-order ideal-type scientific models were refined to include typical motives. The models were compared to one another (step 4) to describe and understand how the actions of these employee types differed from other employee types and how these variations produced different outcomes for each trajectory of action (steps 4 and 5).

Perlow ( 1997 ) found that constant help-seeking led engineers to interrupt other engineers to get solutions to problems. This observation led to the abductively developed hypothesis that interruptions create a time crisis atmosphere for engineers. Perlow ( 1997 ) then created a testable, second-order ideal-type (scientific) model of “the vicious working cycle” (p. 96), developed from first-order data, that explains the productivity problems that the firm (and other research and development firms)—commonly face. Specifically, time pressure → crisis mentality → individual heroics → constant interruptions of others’ work to get help → negative consequences for individual → negative consequences for the organization.

Perlow ( 1997 ) then tested the abductive hypothesis that the vicious work cycle caused productivity problems (stage 5). To do so, the vicious work cycle was transformed into a virtuous cycle using scheduling quiet times to prevent work interruptions: relaxed work atmosphere → individuals focus on own work completion → few interruptions → positive consequences for individual and organization. To test the hypothesis, an experiment was conducted (research process 2 in Table 5 ) with engineers given scheduled quiet times each morning with no interruptions. The experiment was successful: the project deadline was met. The hypothesis about work interruptions and the false belief that long hours are needed for success were supported (design stage 6). Unfortunately, the change was not sustained and engineers reverted to work interruptions when the experiment ended.

There are three additional qualitative approaches used in management research that pursue objectives other than producing empirical findings and developing or testing theories. These include critical theory and research, postmodernism, and change intervention research (see Table 6 ).

The Critical Theory and Research Approach

The term “critical” has many meanings including (a) critiques oriented to uncovering ideological manifestations in social relations (Gephart, 2013 , p. 284); (b) critiques of underlying assumptions of theories; and (c) critique as self-reflection that reflexively encapsulates the investigator (Morrow, 1994 , p. 9). Critical theory and critical management studies bring these conceptions of critical to bear on organizations and employees.

Critical theory and research extend the theories Karl Marx, and the Frankfurt School in Germany (Gephart & Kulicki, 2008 ; Gephart & Pitter, 1995 ; Habermas, 1973 , 1979 ; Morrow, 1994 ; Offe, 1984 , 1985 ). Critical theory and research assume that social science research differs from natural science research because social facts are human creations and social phenomena cannot be controlled as readily as natural phenomena (Gephart, 2013 , p. 284; Morrow, 1994 , p. 9). As a result, critical theory often uses a historical approach to explore issues that arise from the fundamental contradictions of capitalism. Critical research explores ongoing changes within capitalist societies and organizations, and analyzes the objective structures that constrain human imagination and action (Morrow, 1994 ). It seeks to uncover the contradictions of advanced capitalism that emerge from the fundamental contradiction of capitalism: owners of capital have the right to appropriate the surplus value created by workers. This basic contradiction produces further contradictions that become sources of workplace oppression and resistance that create labor issues. Thus contradictions reveal how power creates consciousness (Poutanen & Kovalainen, 2010 ). Critical reflection is used to de-reify taken-for-granted structures that create power inequities and to motivate resistance and critique and escape from dominant structures (see Table 6 ).

Critical management studies build on critical theory in sociology. It seeks to transform management and provide alternatives to mainstream theory (Adler, Forbes, & Willmott, 2007 ). The focus is “the social injustice and environmental destruction of the broader social and economic systems” served by conventional, capitalist managers (Adler et al., 2007 , p. 118). Critical management research examines “the systemic corrosion of moral responsibility when any concern for people or for the environment . . . requires justification in terms of its contribution to profitable growth” (p. 4). Critical management studies goes beyond scientific skepticism to undertake a radical critique of socially divisive and environmentally destructive patterns and structures (Adler et al., 2007 , p. 119). These studies use critical reflexivity to uncover reified capitalist structures that allow certain groups to dominate others. Critical reflection is used to de-reify and challenge the facts of social life that are seen as immutable and inevitable (Gephart & Richardson, 2008 , p. 34). The combination of dialogical inquiry, critical reflection, and a combination of qualitative and quantitative methods and data are common in this research (Gephart, 2013 , p. 285). Some researchers use deductive logics to build falsifiable theories while other researchers do grounded theory building (Blaikie, 2010 ). Validity of critical research is assessed as the capability the research has to produce critical reflexivity that comprehends dominant ideologies and transforms repressive structures into democratic processes and institutions (Gephart & Richardson, 2008 ).

An illustrative example of critical research . Barker ( 1998 , p. 130) studied “concertive control” in self-managed work teams in a small manufacturing firm. Concertive control refers to how workers collaborate to engage in self-control. Barker sought to understand how control practices in the self-managed team setting, established to allow workers greater control over their work, differed from previous bureaucratic processes. Interviews, observations, and documents were used as data sources. The resultant description of work activities and control shows that rather than allowing workers greater control, the control process enacted by workers themselves became stronger: “The iron cage becomes stronger” and almost invisible “to the workers it incarcerates” (Barker, 1998 , p. 155). This study shows how traditional participant observation methods can be used to uncover and contest reified structures and taken-for-granted truths, and to reveal the hidden managerial interests served.

Postmodern Perspectives

The postmodern perspective (Boje, Gephart, & Thatchenkery, 1996 ) is based in philosophy, the humanities, and literary criticism. Postmodernism, as an era, refers to the historical stage following modernity that evidences a new cultural worldview and style of intellectual production (Boje et al., 1996 ; Jameson, 1991 ; Rosenau, 1992 ). Postmodernism offers a humanistic approach to reconceptualize our experience of the social world in an era where it is impossible to establish any foundational underpinnings for knowledge. The postmodern perspective assumes that realities are contradictory in nature and value-laden (Gephart & Richardson, 2008 ; Rosenau, 1992 , p. 6). It addresses the values and contradictions of contemporary settings, how hidden power operates, and how people are categorized (Gephart, 2013 ). Postmodernism also challenges the idea that scientific research is value free, and asks “whose values are served by research?”

Postmodern essays depart from concerns with systematic, replicable research methods and designs (Calas, 1987 ). They seek instead to explore the values and contradictions of contemporary organizational life (Gephart, 2013 , p. 289). Research reports have the character of essays that seek to reconceptualize how people experience the world (Martin, 1990 ; Rosenau, 1992 ) and to disrupt this experience by producing “reading effects” that unsettle a community (Calas & Smircich, 1991 ).

Postmodernism examines intertextual relations—how texts become embedded in other texts—rather than causal relations. It assumes there are no singular realities or truths, only multiple realities and multiple truths, none of which are superior to other truths (Gephart, 2013 ). Truth is conceived as the outcome of language use in a context where power relations and multiple realities exist.

From a methodological view, postmodern research tends to focus on discourse: texts and talk. Data collection (in so far as it occurs) focuses on records of discourse—texts of spoken and written verbal communication (Fairclough, 1992 ). Use of formal or official records including recordings, texts and transcripts is common. Analytically, scholars tend to use critical discourse analysis (Fairclough, 1992 ), narrative analysis (Czarniawska, 1998 ; Ganzin, Gephart, & Suddaby, 2014 ), rhetorical analysis (Culler, 1982 ; Gephart, 1988 ; McCloskey, 1984 ) and deconstruction (Calais & Smircich, 1991 ; Gephart, 1988 ; Kilduff, 1993 ; Martin, 1990 ) to understand how categories are shaped through language use and come to privilege or subordinate individuals.

Postmodernism challenges models of knowledge production by showing how political discourses produce totalizing categories, showing how categorization is a tool for social control, and attempting to create opportunities for alternative representations of the world. It thus provides a means to uncover and expose discursive features of domination, subordination, and resistance in society (Locke & Golden-Biddle, 2004 ).

An illustrative example of postmodern research . Martin ( 1990 ) deconstructed a conference speech by a company president. The president was so “deeply concerned” about employee well-being and involvement at work that he encouraged a woman manager “to have her Caesarian yesterday” so she could participate in an upcoming product launch. Martin deconstructs the story to reveal the suppression of gender conflict in the dialogue and how this allows gender conflict and subjugation to continue. This research established the existence of important domains of organizational life, such as tacit gender conflict, that have not been adequately addressed and explored the power dynamics therein.

The Organization Development Approach

OD involves a planned and systematic diagnosis and intervention into an organizational system, supported by top management, with the intent of improving the organization’s effectiveness (Beckhard, 1969 ; Palmer, Dunford, & Buchanan, 2017 , p. 282). OD research (termed “clinical research” by Schein, 1987 ) is concerned with changing attitudes and behaviors to instantiate fundamental values in organizations. OD research often follows the general process of action research (Lalonde, 2019 ) that involves working with actors in an organization to help improve the organization. OD research involves a set of stages the OD practitioner (the leader of the intervention) uses: (a) problem identification; (b) consultation between OD practitioner and client; (c) data collection and problem diagnosis; (d) feedback; (e) joint problem diagnosis; (f) joint action planning; (g) change actions; and (h) further data gathering to move recursively to a refined step 1.

An illustrative example of the organization development approach . Numerous OD techniques exist to help organizations change (Palmer et al., 2017 ). The OD approach is illustrated here by the socioeconomic approach to management (SEAM) (Buono & Savall, 2007 ; Savall, 2007 ). SEAM provides a scientific approach to organizational intervention consulting that integrates qualitative information on work practices and employee and customer needs (socio) with quantitative and financial performance measures (economics). The socioeconomic intervention process commences by uncovering dysfunctions that require attention in an organization. SEAM assumes that organizations produce both (a) explicit benefits and costs and (b) hidden benefits and costs. Hidden costs refer to economic implications of organizational dysfunctions (Worley, Zardet, Bonnet, & Savall, 2015 , pp. 28–29). These include problems in working conditions; work organization; communication, co-ordination, and co-operation; time management; integrated training; and strategy implementation (Savall, Zardet, & Bonnet, 2008 , p. 33). Explicit costs are emphasized in management decision-making but hidden costs are ignored. Yet hidden costs from dysfunctions often greatly outstrip explicit costs.

For example, a fishing company sought to protect its market share by reducing the price and quality of products, leading to the purchase of poor-quality fish (Savall et al., 2008 , pp. 31–32). This reduced visible costs by €500,000. However, some customers stopped purchasing because of the lower-quality product, producing a loss of sales of €4,000,000 in revenue or an overall drop in economic performance of €3,500,000. The managers then changed their strategy to focus on health and quality. They implemented the SEAM approach, assessed the negative impact of the hidden costs on value added and revenue received, and purchased higher-quality fish. Visible costs (expenses) increased by €1,000,000 due to the higher cost for a better-quality product, but the improved quality (performance) cut the hidden costs by increasing loyalty and increased sales by €5,000,000 leaving an increased profit of €4,000,000.

SEAM allows organizations to uncover hidden costs in their operations and to convert these costs into value-added human potential through a process termed “qualimetrics.” Qualimetrics assesses the nature of hidden costs and organizational dysfunctions, develops estimates of the frequencies and amounts of hidden costs in specific organizational domains, and develops actions to reduce the hidden costs and thereby release additional value added for the organization (Savall & Zardet, 2011 ). The qualimetric process is participative and involves researchers who use observations, interviews and focus groups of employees to (a) describe, qualitatively, the dysfunctions experienced at work (qualitative data); (b) estimate the frequencies with which dysfunctions occur (quantitative data); and (c) estimate the costs of each dysfunction (financial data). Then, strategic change actions are developed to (a) identify ways to reduce or overcome the dysfunction, (b) estimate how frequently the dysfunction can be remedied, and (c) estimate the overall net costs of removing the hidden costs to enhance value added. The economic balance is then assessed for changes to transform the hidden costs into value added.

OD research creates actionable knowledge from practice (Lalonde, 2019 ). OD intervention consultants use multistep processes to change organizations that are flexible practices not fixed research designs. OD plays an important role in developing evidence-based practices to improve organizational functioning and performance. Worley et al. ( 2015 ) provide a detailed example of the large-scale implementation of the SEAM OD approach in a large, international firm.

Here we discuss implication of qualitative research designs for covert research, reporting qualitative work and novel integrations of qualitative and quantitative work.

Covert Research

University ethics boards require researchers who undertake research with human participants to obtain informed consent from the participants. Consent requires that all participants must be informed of details of the research procedure in which they will be involved and any risks of participation. Researchers must protect subjects’ identities, offer safeguards to limit risks, and insure informant anonymity. This consent must be obtained in the form of a signed agreement from the participant, obtained prior to the commencement of research observations (McCurdy et al., 2005 , pp. 29–32).

Covert research that fails to fully disclose research purposes or practices to participants, or that is otherwise deceptive by design or tacit practice, has long been considered “suspect” in the field (Graham, 1995 ; Roulet, Gill, Stenger, & Gill, 2017 ). This is changing. Research methodologists have shown that the over/covert dimension is a continuum, not a dichotomy, and that unintended covert elements occur in many situations (Roulet et al., 2017 ). Thus all qualitative observation involves some degree of deception due practical constraints on doing observations since it is difficult to do fully overt research, particularly in observational contexts with many people, and to gain advance consent from everyone in the organization one might encounter.

There are compelling benefits to covert research. It can provide insights not possible if subjects are fully informed of the nature or existence of the research. For example, the year-long, covert observational study of an asylum as a “total institution” (Goffman, 1961 ) showed how ineffective the treatment of mental illness was at the time. This opened the field of mental health to social science research (Roulet et al., 2017 , p. 493). Covert research can also provide access to institutions that researchers would otherwise be excluded from, including secretive and secret organizations (p. 492). This could allow researchers to collect data as an insider and to better see and experience the world from members’ perspective. It could also reduce “researcher demand effects” that occur when informants obscure their normal behavior to conform to research expectations. Thus, the inclusion of covert research data collection in research designs and proposals is an emerging trend and realistic possibility. Ethics applications can be developed that allow for aspects of covert research, and observations in many public settings do not require informed consent.

The Appropriate Style for Reporting Qualitative Work

The appropriate style for reporting qualitative research has become an issue of concern. For example, editors of the influential Academy of Management Journal have noted the emergence of an “AMJ style” for qualitative work (Bansal & Corley, 2011 , p. 234). They suggest that all qualitative work should use this style so that qualitative research can “benefit” from: “decades of refinement in the style of quantitative work.” The argument is that most scholars can assess the empirical and theoretical contributions of quantitative work but find it difficult to do so for qualitative research. It is easier for quantitatively trained editors and scholars “to spot the contribution of qualitative work that mimics the style of quantitative research.” Further, “the majority of papers submitted to . . . AMJ tend to subscribe to the paradigm of normal science that aims to find relationships among valid constructs that can be replicated by anyone” (Bansal, Smith, & Vaara, 2018 , p. 1193). These recommendations appear to explicitly encourage the reporting of qualitative results as if they were quantitatively produced and interpreted and highlights the advantage of conformity to the prevailing positivist perspective to gain publication in AMJ.

Yet AMJ editors have also called for researchers to “ensure that the research questions, data, and analysis are internally consistent ” (Bansal et al., 2018 , p. 1193) and to “Be authentic , detailed and clear in argumentation” (emphasis added) (Bansal et al., 2018 , p. 1193). These calls for consistency appear to be inconsistent with suggestions to present all qualitative research using a style that mimics quantitative, positivist research. Adopting the quantitative or positivist style for all qualitative reports may also confuse scholars, limit research quality, and hamper efforts to produce innovative, non-positivist research. This article provides six qualitative research designs to ensure a range of qualitative research publications are internally consistent in methods, logics, paradigmatic commitments, and writing styles. These designs provide alternatives to positivist mimicry in non-positivist scholarly texts.

Integrating Qualitative and Quantitative Research in New Ways

Qualitative research often omits consideration of the naturally occurring uses of numbers and statistics in everyday discourse. And quantitative researchers tend to ignore qualitative evidence such as stories and discourse. Yet knowledge production processes in society “rely on experts and laypeople and, in so doing, make use of both statistics and stories in their attempt to represent and understand social reality” (Ainsworth & Hardy, 2012 , p. 1649). Numbers and statistics are often used in stories to create legitimacy, and stories provide meaning to numbers (Gephart, 1988 ). Hence stories and statistics cannot be separated in processes of knowledge production (Ainsworth & Hardy, 2012 , p. 1697). The lack of attention to the role of quantification in everyday life means a huge domain of organizational discourse—all talk that uses numbers, quantities, and statistics—is largely unexplored in organizational research.

Qualitative research has, however, begun to study how words and numbers are mutually used for organizational storytelling (Ainsworth & Hardy, 2012 ; Gephart, 2016 ). This focus offers the opportunity to develop research designs to explore qualitative features and processes involved in quantitative phenomena such as financial crises (Gephart, 2016 ), to address how stories and numbers need to work together to create legitimate knowledge (Ainsworth & Hardy, 2012 ), and to show how statistics are used rhetorically to convince others of truths in organizational research (Gephart, 1988 ).

Ethnostatistics (Gephart, 1988 ; Gephart & Saylors, 2019 ) provides one example of how to integrate qualitative and quantitative research. Ethnostatistics examines how statistics are constructed and used by professionals. It explores how statistics are constructed in real settings, how violations of technical assumptions impact statistical outcomes, and how statistics are used rhetorically to convince others of the truth of research outcomes. Ethnostatistics has been used to reinterpret data from four celebrated network studies that themselves were reanalyzed (Kilduff & Oh, 2006 ). The ethnostatistical reanalyses revealed how ad hoc practices, including judgment calls and the imputation of new data into old data set for reanalysis, transformed the focus of network research from diffusion models to structural equivalence models.

Another innovative study uses a Bayesian ethnostatistical approach to understand how the pressure to produce sophisticated and increasingly complex theoretical narratives for causal models has impacted the quantitative knowledge generated in top journals (Saylors & Trafimow, 2020 ). The use of complex causal models has increased substantially over time due to a qualitative and untested belief that complex models are true. Yet statistically speaking, as the number of variables in a model increase, the likelihood the model is true rapidly decreases (Saylors & Trafimow, 2020 , p. 3).

The authors test the previously untested (qualitative) belief that complex causal models can be true. They found that “the joint probability of a six variable model is about 3.5%” (Saylors & Trafimow, 2020 , p. 1). They conclude that “much of the knowledge generated in top journals is likely false” hence “not reporting a (prior) belief in a complex model” should be relegated to the set of questionable research practices. This study shows how qualitative research that explores the lay theories and beliefs of statisticians and quantitative researchers can challenge and disrupt conventions in quantitative research, improve quantitative practices, and contribute qualitative foundations to quantitative research. Ethnostatistics thus opens the qualitative foundations of quantitative research to critical qualitative analyses.

The six qualitative research design processes discussed in this article are evident in scholarly research on organizations and management and provide distinct qualitative research designs and approaches to use. Qualitative research can provide research insights from several theoretical perspectives, using well-developed methods to produce scientific and scholarly insights into management and organizations. These approaches and designs can also inform management practice by creating actionable knowledge. The intended contribution of this article is to describe these well-developed methods, articulate key practices, and display core research designs. The hope is both to better equip researchers to do qualitative research, and to inspire them to do so.

Acknowledgments

The authors wish to acknowledge the assistance of Karen Lund at The University of Alberta for carefully preparing Figure 1 . Thanks also to Beverly Zubot for close reading of the manuscript and helpful suggestions.

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1. The fourth logic is retroduction. This refers to the process of building hypothetical models of structures and mechanisms that are assumed to produce empirical phenomena. It is the primary logic used in the critical realist approach to scientific research (Avenier & Thomas, 2015 ; Bhaskar, 1978 ). Retroduction requires the use of inductive or abductive strategies to discover the mechanisms that explain regularities (Blaikie, 2010 , p. 87). There is no evident logic for discovering mechanisms and this requires disciplined scientific thinking aided by creative imagination, intuition, and guesswork (Blaikie, 2010 ). Retroduction is likr deduction in asking “what” questions and differs from abduction because it produces explanations rather than understanding, causes rather than reasons, and hypothetical conceptual mechanisms rather than descriptions of behavioral processes as outcomes. Retroduction is becoming important in the field but has not as yet been extensively used in management and organization studies (for examples of uses, see Avenier & Thomas, 2015 ); hence, we do not address it at length in this article.

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The SAGE Handbook of Qualitative Business and Management Research Methods

• Catherine Cassell - University of Birmingham, UK
• Ann L Cunliffe - FGV EAESP Brazil
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The SAGE Handbook of Qualitative Business and Management Research Methods provides a state-of–the-art overview of qualitative research methods in the business and management field.

The Handbook celebrates the diversity of the field by drawing from a wide range of traditions and by bringing together a number of leading international researchers engaged in studying a variety of topics through multiple qualitative methods. The chapters address the philosophical underpinnings of particular approaches to research, contemporary illustrations, references, and practical guidelines for their use.  The two volumes therefore provide a useful resource for Ph.D. students and early career researchers interested in developing and expanding their knowledge and practice of qualitative research. In covering established and emerging methods, it also provides an invaluable source of information for faculty teaching qualitative research methods.

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  Volume One: History and Tradition

Part One:   Influential Traditions: underpinning qualitative research: positivism, interpretivism, pragmatism, constructionism, critical, poststructuralism, hermeneutics, postcolonialism, critical realism, mixed methods, grounded theory, feminist and indigenous approaches.

Part Two:   Research Designs: ethnography, field research, action research, case studies, process and practice methodologies.

Part Three :   The Researcher: positionality, reflexivity, ethics, gender and intersectionality, writing from the body, and achieving critical distance.

Part Four: Challenges: research design, access and departure, choosing participants, research across boundaries, writing for different audiences, ethics in international research, digital ethics, and publishing qualitative research.

  Volume Two: Methods and Challenges

Part One: Contemporary methods: interviews, archival analysis, autoethnography, rhetoric, historical, stories and narratives, discourse analysis, group methods, sociomateriality, fiction, metaphors, dramaturgy, diary, shadowing and thematic analysis.

Part Two: Visual methods: photographs, drawing, video, web images, semiotics and symbols, collages, documentaries.

Part Three: Methodological developments: aesthetics and smell, fuzzy set comparative analysis, sewing quilts, netnography, ethnomusicality, software, ANTI-history, emotion, and pattern matching. 

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In This Article Expand or collapse the "in this article" section Qualitative Research Methods

Introduction.

• Reference Resources
• Philosophies Underpinning Qualitative Research
• Case Studies
• Ethnography
• Action Research
• Focus Groups
• Observation
• Visual Methods
• Content Analysis
• Thematic/Template Analysis
• Grounded Theory
• Language-Based Approaches
• Reflexivity
• Assessing Quality and Criteriology

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Qualitative Research Methods by Catherine Cassell LAST REVIEWED: 28 January 2013 LAST MODIFIED: 28 January 2013 DOI: 10.1093/obo/9780199846740-0026

Qualitative research methods in the field of management typically rely on nonquantitative forms of data collection and nonstatistical forms of data analysis. A variety of methods are encompassed under this umbrella term, and because these methods are used in a diversity of philosophical approaches, they offer a complex and rich source of research techniques. Qualitative researchers are keen to generate rich data that focus on the meanings and interpretations that individuals or groups ascribe to a given concept or situation. Because research usually takes place in naturalistic settings, such as in organizations, researchers may be concerned with reflexivity or the researcher’s impact on the conduct of the research and the production of knowledge. Furthermore, qualitative researchers see the informants in their research as active participants in the research process rather than simply as subjects who are on the receiving end of various treatments. A number of different research strategies can focus entirely on qualitative methods, including Case Studies , Ethnography , and Action Research . Above all, the qualitative researcher seeks to use these methods to access the subjective experience of organizational life and behavior.

An increasing number of textbooks in this area seek to introduce the reader to qualitative research. Some authors provide their own scoping of the field and highlight some of the key qualitative research methods and their accompanying challenges, as in Lee 1999 . Other texts present an overview of the various methods of data collection and analysis, such as Cassell and Symon 2004 , Symon and Cassell 2012 , and Eriksson and Kovalainen 2008 .

Cassell, Catherine, and Gillian Symon, eds. Essential Guide to Qualitative Methods in Organizational Research . London: SAGE, 2004.

Contains twenty-eight individually authored chapters, each of which focuses on a different qualitative method. Chapters are written by researchers who have used the method in their own empirical work.

Eriksson, Päivi, and Anne Kovalainen. Qualitative Methods in Business Research . London: SAGE, 2008.

This book provides a comprehensive guide to the different methods of qualitative research.

Lee, Thomas W. Using Qualitative Methods in Organizational Research . Thousand Oaks, CA: SAGE, 1999.

Provides an overview of different mixed-methods designs and a range of different strategies and methods for qualitative research.

Symon, Gillian, and Catherine Cassell, eds. Qualitative Organizational Research: Core Methods and Current Challenges . London: SAGE, 2012.

Twenty-seven chapters written by different qualitative researchers about the key issues involved and methods used in conducting qualitative organizational research.

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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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Conflicts of interest.

There are no conflicts of interest.

• Open access
• Published: 10 April 2024

“So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study

• Anne Müller   ORCID: orcid.org/0000-0002-2456-2492 1 ,
• Fabian Hebben   ORCID: orcid.org/0009-0003-6401-3433 1 ,
• Kim Dillen 1 ,
• Veronika Dunkl 1 ,
• Yasemin Goereci 2 ,
• Raymond Voltz 1 , 3 , 4 ,
• Peter Löcherbach 5 ,
• Clemens Warnke   ORCID: orcid.org/0000-0002-3510-9255 2 &
• Heidrun Golla   ORCID: orcid.org/0000-0002-4403-630X 1

on behalf of the COCOS-MS trial group represented by Martin Hellmich

BMC Health Services Research volume  24 , Article number:  453 ( 2024 ) Cite this article

159 Accesses

Metrics details

Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case management (CCM) helps ensure optimal individual care as well as care at a higher-level. The goal of the current qualitative study was to determine the experiences of PwsMS, caregivers and health care specialists (HCSs) with the CCM.

In the current qualitative sub study, as part of a larger trial, in-depth semi-structured interviews with PwsMS, caregivers and HCSs who had been in contact with the CCM were conducted between 02/2022 and 01/2023. Data was transcribed, pseudonymized, tested for saturation and analyzed using structuring content analysis according to Kuckartz. Sociodemographic and interview characteristics were analyzed descriptively.

Thirteen PwsMS, 12 caregivers and 10 HCSs completed interviews. Main categories of CCM functions were derived deductively: (1) gatekeeper function, (2) broker function, (3) advocacy function, (4) outlook on CCM in standard care. Subcategories were then derived inductively from the interview material. 852 segments were coded. Participants appreciated the CCM as a continuous and objective contact person, a person of trust (92 codes), a competent source of information and advice (on MS) (68 codes) and comprehensive cross-insurance support (128 codes), relieving and supporting PwsMS, their caregivers and HCSs (67 codes).

Conclusions

Through the cross-sectoral continuous support in health-related, social, financial and everyday bureaucratic matters, the CCM provides comprehensive and overriding support and relief for PwsMS, caregivers and HCSs. This intervention bears the potential to be fine-tuned and applied to similar complex patient groups.

Trial registration

The study was approved by the Ethics Committee of the University of Cologne (#20–1436), registered at the German Register for Clinical Studies (DRKS00022771) and in accordance with the Declaration of Helsinki.

Peer Review reports

Introduction

Multiple sclerosis (MS) is the most frequent and incurable chronic inflammatory and degenerative disease of the central nervous system (CNS). Illness awareness and the number of specialized MS clinics have increased since the 1990s, paralleled by the increased availability of disease-modifying therapies [ 1 ]. There are attempts in the literature for the definition of severe MS [ 2 , 3 ]. These include a high EDSS (Expanded disability Status Scale [ 4 ]) of ≥ 6, which we took into account in our study. There are also other factors to consider, such as a highly active disease course with complex therapies that are associated with side effects. These persons are (still) less disabled, but may feel overwhelmed with regard to therapy, side effects and risk monitoring of therapies [ 5 , 6 ].

Persons with severe MS (PwsMS) develop individual disease trajectories marked by a spectrum of heterogeneous symptoms, functional limitations, and uncertainties [ 7 , 8 ] manifesting individually and unpredictably [ 9 ]. This variability can lead to irreversible physical and mental impairment culminating in complex needs and daily challenges, particularly for those with progressive and severe MS [ 5 , 10 , 11 ]. Such challenges span the spectrum from reorganizing biographical continuity and organizing care and everyday live, to monitoring disease-specific therapies and integrating palliative and hospice care [ 5 , 10 ]. Moreover, severe MS exerts a profound of social and economic impact [ 9 , 12 , 13 , 14 ]. PwsMS and their caregivers (defined in this manuscript as relatives or closely related individuals directly involved in patients’ care) often find themselves grappling with overwhelming challenges. The process of organizing and coordinating optimal care becomes demanding, as they contend with the perceived unmanageability of searching for, implementing and coordinating health care and social services [ 5 , 15 , 16 , 17 ].

Case management (CM) proved to have a positive effect on patients with neurological disorders and/or patients with palliative care needs [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ]. However, a focus on severe MS has been missed so far Case managers primarily function as: (1) gatekeeper involving the allocation of necessary and available resources to a case, ensuring the equitable distribution of resources; as (2) broker assisting clients in pursuing their interests, requiring negotiation to provide individualized assistance that aligns as closely as possible with individual needs and (3) advocate working to enhance clients’ individual autonomy, to advocate for essential care offers, and to identify gaps in care [ 25 , 26 , 27 , 28 , 29 ].

Difficulties in understanding, acting, and making decisions regarding health care-related aspects (health literacy) poses a significant challenge for 54% of the German population [ 30 ]. Additionally acting on a superordinate level as an overarching link, a care and case management (CCM) tries to reduce disintegration in the social and health care system [ 31 , 32 ]. Our hypothesis is that a CCM allows PwsMS and their caregivers to regain time and resources outside of disease management and to facilitate the recovery and establishment of biographical continuity that might be disrupted due to severe MS [ 33 , 34 ].

Health care specialists (HCSs) often perceive their work with numerous time and economic constraints, especially when treating complex and severely ill individuals like PwsMS and often have concerns about being blamed by patients when expectations could not be met [ 35 , 36 ]. Our hypothesis is that the CCM will help to reduce time constraints and free up resources for specialized tasks.

To the best of our knowledge there is no long-term cross-sectoral and outreaching authority or service dedicated to assisting in the organization and coordination of the complex care concerns of PwsMS within the framework of standard care addressing needs in health, social, financial, every day and bureaucratic aspects. While some studies have attempted to design and test care programs for persons with MS (PwMS), severely affected individuals were often not included [ 37 , 38 , 39 ]. They often remain overlooked by existing health and social care structures [ 5 , 9 , 15 ].

The COCOS-MS trial developed and applied a long-term cross-sectoral CCM intervention consisting of weekly telephone contacts and monthly re-assessments with PwsMS and caregivers, aiming to provide optimal care. Their problems, resources and (unmet) needs were assessed holistically including physical health, mental health, self-sufficiency and social situation and participation. Based on assessed (unmet) needs, individual care plans with individual actions and goals were developed and constantly adapted during the CCM intervention. Contacts with HCSs were established to ensure optimal care. The CCM intervention was structured through and documented in a CCM manual designed for the trial [ 40 , 41 ].

Our aim was to find out how PwsMS, caregivers and HCSs experienced the cross-sectoral long-term, outreaching patient advocacy CCM.

This study is part of a larger phase II, randomized, controlled clinical trial “Communication, Coordination and Security for people with severe Multiple Sclerosis (COCOS-MS)” [ 41 ]. This explorative clinical trial, employing a mixed-method design, incorporates a qualitative study component with PwsMS, caregivers and HCSs to enrich the findings of the quantitative data. This manuscript focuses on the qualitative data collected between February 2022 and January 2023, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [ 42 ].

Research team

Three trained authors AM, KD and FH (AM, female, research associate, M.A. degree in Rehabilitation Sciences; KD, female, researcher, Dr. rer. medic.; FH, male, research assistant, B.Sc. degree in Health Care Management), who had no prior relationship with patients, caregivers or HCSs conducted qualitative interviews. A research team, consisting of clinical experts and health services researchers, discussed the development of the interview guides and the finalized category system.

Theoretical framework

Interview data was analyzed with the structuring content analysis according to Kuckartz. This method enables a deductive structuring of interview material, as well as the integration of new aspects found in the interview material through the inductive addition of categories in an iterative analysis process [ 43 ].

Sociodemographic and interview characteristics were analyzed descriptively (mean, median, range, SD). PwsMS, caregivers and HCSs were contacted by the authors AM, KD or FH via telephone or e-mail after providing full written informed consent. Participants had the option to choose between online interviews conducted via the GoToMeeting 10.19.0® Software or face-to-face. Peasgood et al. (2023) found no significant differences in understanding questions, engagement or concentration between face-to-face and online interviews [ 44 , 45 ]. Digital assessments were familiar to participants due to pandemic-related adjustments within the trial.

Out of 14 PwsMS and 14 caregivers who were approached to participate in interviews, three declined to complete interviews, resulting in 13 PwsMS (5 male, 8 female) and 12 caregiver (7 male, 5 female) interviews, respectively (see Fig.  1 ). Thirty-one HCSs were contacted of whom ten (2 male, 8 female) agreed to be interviewed (see Fig.  2 ).

Flowchart of PwsMS and caregiver participation in the intervention group of the COCOS-MS trial. Patients could participate with and without a respective caregiver taking part in the trial. Therefore, number of caregivers does not correspond to patients. For detailed inclusion criteria see also Table  1 in Golla et al. [ 41 ]

Flowchart of HCSs interview participation

Setting and data collection

Interviews were carried out where participants preferred, e.g. at home, workplace, online, and no third person being present. In total, we conducted 35 interviews whereof 7 interviews face-to-face (3 PwsMS, 3 caregivers, 1 HCS).

The research team developed a topic guide which was meticulously discussed with research and clinical staff to enhance credibility. It included relevant aspects for the evaluation of the CCM (see Tables  1 and 2 , for detailed topic guides see Supplementary Material ). Patient and caregiver characteristics (covering age, sex, marital status, living situation, EDSS (patients only), subgroup) were collected during the first assessment of the COCOS-MS trial and HCSs characteristics (age, sex, profession) as well as interview information (length and setting) were collected during the interviews. The interview guides developed for this study addressed consistent aspects both for PwsMS and caregivers (see Supplementary Material ):

For HCSs it contained the following guides:

Probing questions were asked to get more specific and in-depth information. Interviews were carried out once and recorded using a recording device or the recording function of the GoToMeeting 10.19.0® Software. Data were pseudonymized (including sensitive information, such as personal names, dates of birth, or addresses), audio files were safely stored in a data protection folder. The interview duration ranged from 11 to 56 min (mean: 23.9 min, SD: 11.1 min). Interviews were continued until we found that data saturation was reached. Audio recordings were transcribed verbatim by an external source and not returned to participants.

Data analysis

Two coders (AM, FH) coded the interviews. Initially, the first author (AM) thoroughly reviewed the transcripts to gain a sense of the interview material. Using the topic guide and literature, she deductively developed a category system based on the primary functions of CM [ 25 , 26 , 27 , 28 , 29 ]. Three interviews were coded repeatedly for piloting, and inductive subcategories were added when new themes emerged in the interview material. This category system proved suitable for the interview material. The second coder (FH) familiarized himself with the interview material and category system. Both coders (AM, FH) independently coded all interviews, engaging in discussions and adjusting codes iteratively. The finalized category system was discussed and consolidated in a research workshop and within the COCOS-MS trial group and finally we reached an intercoder agreement of 90% between the two coders AM and FH, computed by the MAXQDA Standard 2022® software.

We analyzed sociodemographic and interview characteristics using IBM SPSS Statistics 27® and Excel 2016®. Transcripts were managed and analyzed using MAXQDA Standard 2022®.

Participants were provided with oral and written information about the trial and gave written informed consent. Ethical approvals were obtained from the Ethics Committee of the University of Cologne (#20–1436). The trial is registered in the German Register for Clinical Studies (DRKS) (DRKS00022771) and is conducted under the Declaration of Helsinki.

Characteristics of participants and interviews

PwsMS participating in an interview were mainly German (84.6%), had a mean EDSS of 6.8 (range: 6–8) and MS for 13.5 years (median: 14; SD: 8.1). For detailed characteristics see Table  3 .

Most of the interviewed caregivers (9 caregivers) were the partners of the PwsMS with whom they lived in the same household. For further details see Table  3 .

HCSs involved in the study comprised various professions, including MS-nurse (3), neurologist (2), general physician with further training in palliative care (1), physician with further training in palliative care and pain therapist (1), housing counselling service (1), outpatient nursing service manager (1), participation counselling service (1).

Structuring qualitative content analysis

The experiences of PwsMS, caregivers and HCSs were a priori deductively assigned to four main categories: (1) gatekeeper function, (2) broker function, (3) advocacy function [ 25 , 26 , 27 , 28 , 29 ] and (4) Outlook on CCM in standard care, whereas the subcategories were developed inductively (see Fig.  3 ).

Category system including main and subcategories of the qualitative thematic content analysis

The most extensive category, housing the highest number of codes and subcodes, was the “ Outlook on CCM in standard care ” (281 codes). Following this, the category “ Advocacy Function ” contained 261 codes. The “ Broker Function ” (150 codes) and the “ Gatekeeper Function ” (160 codes) constituted two smaller categories. The majority of codes was identified in the caregivers’ interviews, followed by those of PwsMS (see Table  4 ). Illustrative quotes for each category and subcategory can be found in Table  5 .

Persons with severe multiple sclerosis

In the gatekeeper function (59 codes), PwsMS particularly valued the CCM as a continuous contact person . They appreciated the CCM as a person of trust who was reliably accessible throughout the intervention period. This aspect, with 41 codes, held significant importance for PwsMS.

Within the broker function (44 codes), establishing contact was most important for PwsMS (22 codes). This involved the CCM as successfully connecting PwsMS and caregivers with physicians and therapists, as well as coordinating and arranging medical appointments, which were highly valued. Assistance in authority and health and social insurance matters (10 codes) was another subcategory, where the CCM encompassed support in communication with health insurance companies, such as improving the level of care, assisting with retirement pension applications, and facilitating rehabilitation program applications. Optimized care (12 codes) resulted in improved living conditions and the provision of assistive devices through the CCM intervention.

The advocacy function (103 codes) emerged as the most critical aspect for PwsMS, representing the core of the category system. PwsMS experienced multidimensional, comprehensive, cross-insurance system support from the CCM. This category, with 43 statements, was the largest within all subcategories. PwsMS described the CCM as addressing their concerns, providing help, and assisting with the challenges posed by the illness in everyday life. The second-largest subcategory, regaining, maintaining and supporting autonomy (25 codes), highlighted the CCM’s role in supporting self-sufficiency and independence. Reviving personal wellbeing (17 codes) involved PwsMSs’ needs of regaining positive feelings, improved quality of life, and a sense of support and acceptance, which could be improved by the CCM. Temporal relief (18 codes) was reported, with the CCM intervention taking over or reducing tasks.

Within the outlook on CCM in standard care (84 codes), eight subcategories were identified. Communications was described as friendly and open (9 codes), with the setting of communication (29 codes) including the frequency of contacts deemed appropriate by the interviewed PwsMS, who preferred face-to-face contact over virtual or telephone interactions. Improvement suggestions for CCM (10 codes) predominantly revolved around the desire for the continuation of the CCM beyond the trial, expressing intense satisfaction with the CCM contact person and program. PwsMS rarely wished for better cooperation with the CCM. With respect to limitations (7 codes), PwsMS distinguished between individual limitations (e.g. when not feeling ready for using a wheelchair) and overriding structural limitations (e.g. unsuccessful search for an accessible apartment despite CCM support). Some PwsMS mentioned needing the CCM earlier in the course of the disease and believed it would beneficial for anyone with a chronic illness (6 codes).

In the gatekeeper function (75 codes), caregivers highly valued the CCM as a continuous contact partner (33 codes). More frequently than among the PwsMS interviewed, caregivers valued the CCM as a source of consultation/ information on essential individual subjects (42 codes). The need for basic information about the illness, its potential course, treatment and therapy options, possible supportive equipment, and basic medical advice/ information could be met by the CCM.

Within the broker function (63 codes), caregivers primarily experienced the subcategory establish contacts (24 codes). They found the CCM as helpful in establishing and managing contact with physicians, therapists and especially with health insurance companies. In the subcategory assistance in authority and health and social insurance matters (22 codes), caregivers highlighted similar aspects as the PwsMS interviewed. However, there was a particular emphasis on assistance with patients' retirement matters. Caregivers also valued the optimization of patients’ care and living environment (17 codes) in various life areas during the CCM intervention, including improved access to assistive devices, home modification, and involvement of a household support and/ or nursing services.

The advocacy function, with 115 codes, was by far the broadest category . The subcategory multidimensional, comprehensive, cross-insurance system support represented the largest subcategory of caregivers, with 70 statements. In summary, caregivers felt supported by the CCM in all domains of life. Regaining, maintaining and supporting autonomy (11 codes) and reviving personal wellbeing (8 codes) in the form of an improved quality of life played a role not only for patients but also for caregivers, albeit to a lower extend. Caregivers experienced temporal relief (26 codes) as the CCM undertook a wide range of organizational tasks, freeing up more needed resources for their own interests.

For the Outlook on CCM in standard care , caregivers provided various suggestions (81 codes). Similar to PwsMS, caregivers felt that setting (home based face-to-face, telephone, virtual) and frequency of contact were appropriate (10 codes, communication setting ) and communications (7 codes) were recognized as open and friendly. However, to avoid conflicts between caregiver and PwsMS, caregivers preferred meeting the CCM separately from the PwsMS in the future. Some caregivers wished the CCM to specify all services it might offer at the beginning, while others emphasized not wanting this. Like PwsMS, caregivers criticized the CCM intervention being (trial-related) limited to one year, regardless of whether further support was needed or processes being incomplete (13 codes, improvement suggestions ). After the CCM intervention time had expired, the continuous contact person and assistance were missed and new problems had arisen and had to be managed with their own resources again (9 codes, effects of CCM discontinuation ), which was perceived as an exhausting or unsolvable endeavor. Caregivers identified analogous limitations (8 codes), both individual and structural. However, the largest subcategory, was the experienced potential of CCM (27 codes), reflected in extremely high satisfaction with the CCM intervention. Like PwsMS, caregivers regarded severe chronically ill persons in general as target groups for a CCM (7 codes) and would implement it even earlier, starting from the time of diagnosis. They considered a CCM to be particularly helpful for patients without caregivers or for caregivers with limited (time) resources, as it was true for most caregivers.

Health care specialists

In the gatekeeper function (26 codes) HCSs particularly valued the CCM as a continuous contact partner (18 codes). They primarily described their valuable collaboration with the CCM, emphasizing professional exchange between the CCM and HCSs.

Within the broker function (43 codes), the CCM was seen as a connecting link between patients and HCSs, frequently establishing contacts (18 codes). This not only improved optimal care on an individual patient level (case management) but also at a higher, superordinate care level (care management). HCSs appreciated the optimized care and living environment (18 codes) for PwsMS, including improved medical and therapeutic access and the introduction of new assistive devices. The CCM was also recognized as providing assistance in authority and health and social matters (7 codes) for PwsMS and their caregivers.

In the advocacy function (43 codes), HCSs primarily reported temporal relief through CCM intervention (23 codes). They experienced this relief, especially as the CCM provided multidimensional, comprehensive, and cross-insurance system support (15 codes) for PwsMS and their caregivers. Through this support, HCSs felt relieved from time intensive responsibilities that may not fall within their area of expertise, freeing up more time resources for their actual professional tasks.

The largest category within the HCSs interviews was the outlook on CCM in standard care (116 codes). In the largest subcategory, HCSs made suggestions for further patient groups who could benefit (38 codes) from a CCM. Chronic neurological diseases like neurodegenerative diseases (e.g. amyotrophic lateral sclerosis), typical and atypical Parkinson syndromes were mentioned. HCSs considered the enrollment of the CCM directly after the diagnosis of these complex chronic diseases. Additionally, chronic progressive diseases in general or oncological diseases, which may also run chronically, were regarded worthwhile for this approach. HCSs also provided suggestions regarding improvement (21 codes). They wished e.g. for information or contact when patients were enrolled to the CCM, regular updates, exchange and collaborative effort. On the other hand, HCSs reported, that their suggestions for improvement would hardly be feasible due to their limited time resources. Similar to patients and caregivers, HCSs experienced structural limits (13 codes), which a CCM could not exceed due to overriding structural limitations (e.g. insufficient supply of (household) aids, lack of outreach services like psychotherapists, and long processing times on health and pension insurers' side). HCSs were also asked about their opinions on financial resources (14 codes) of a CCM in standard care. All interviewed HCSs agreed that CCM would initially cause more costs for health and social insurers, but they were convinced of cost savings in the long run. HCSs particularly perceived the potential of the CCM (20 codes) through the feedback of PwsMS, highlighting the trustful relationship enabling individualized help for PwsMS and their caregivers.

Persons with severe multiple sclerosis and their caregivers

The long-term cross-sectoral CCM intervention implemented in the COCOS-MS trial addressed significant unmet needs of PwsMS and their caregivers which previous research revealed as burdensome and hardly or even not possible to improve without assistance [ 5 , 6 , 9 , 10 , 33 , 35 , 46 ]. Notably, the CCM service met the need for a reliable, continuous contact partner, guiding patients through the complexities of regulations, authorities and the insurance system. Both, PwsMS and their caregivers highly valued the professional, objective perspective provided by the CCM, recognizing it as a source of relief, support and improved care in line with previous studies [ 37 , 47 ]. Caregivers emphasized the CCM’s competence in offering concrete assistance and information on caregiving and the fundamentals of MS, including bureaucratic, authority and insurances matters. On the other hand, PwsMS particularly appreciated the CCMs external reflective and advisory function, along with empathic social support tailored to their individual concerns. Above all, the continuous partnership of trust, available irrespective of the care sector, was a key aspect that both PwsMS and their caregivers highlighted. This consistent support was identified as one of the main components in the care of PwsMS in previous studies [ 5 , 33 , 35 ].

As the health literacy is inadequate or problematic for 54% of the German population and disintegration in the health and social care system is high [ 30 , 31 , 32 ], the CCM approach serves to enhance health literacy and reduce disintegration of PwsMS and their caregivers by providing cross-insurance navigational guidance in the German health and social insurance sector on a superordinate level. Simultaneously PwsMS and caregivers experienced relief and gained more (time) resources for all areas of life outside of the disease and its management, including own interests and establishing biographical continuity. This empowerment enables patients to find a sense of purpose beyond their illness, regain autonomy, and enhance social participation, reducing the feeling of being a burden to those closest to them. Such feelings are often experienced as burdensome and shameful by PwsMS [ 6 , 48 , 49 , 50 ]. Finding a sense of purpose beyond the illness also contributes to caregivers perceiving their loved ones not primarily as patient but as individuals outside of the disease, reinforcing valuable relationships such as partners, siblings, or children, strengthening emotional bonds. These factors are also highly relevant and well-documented in a suicide-preventive context, as the suicide rate is higher in persons diagnosed with neurological disorders [ 19 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 ] and the feeling of being a burden to others, loss of autonomy, and perceived loss of dignity are significant factors in patients with severe chronic neurological diseases for suicide [ 50 , 57 ].

The temporal relief experienced by the CCM was particularly significant for HCSs and did not only improve the satisfaction of HCSs but also removed unfulfilled expectations and concerns about being blamed by patients when expectations could not be met, which previous studied elaborated [ 35 , 36 ]. Moreover, the CCM alleviated the burden on HCSs by addressing patients’ concerns, allowing them to focus on their own medical responsibilities. This aspect probably reduced the dissatisfaction that arises when HCSs are expected to address issues beyond their medical expertise, such as assistive devices, health and social insurance, and the organization and coordination of supplementary therapies, appointments, and contacts [ 35 , 36 , 61 ]. Consequently, the CCM reduced difficulties of HCSs treating persons with neurological or chronical illnesses, which previous research identified as problematic.

HCSs perceive their work as increasingly condensed with numerous time and economic constraints, especially when treating complex and severely ill individuals like PwsMS [ 36 ]. This constraint was mentioned by HCSs in the interviews and was one of the main reasons why they were hesitant to participate in interviews and may also be an explanation for a shorter interview duration than initially planned in the interview guides. The CCM’s overarching navigational competence in the health and social insurance system was particularly valued by HCSs. The complex and often small-scale specialties in the health and social care system are not easily manageable or well-known even for HCSs, and dealing with them can exceed their skills and time capacities [ 61 ]. The CCM played a crucial role in keeping (temporal) resources available for what HCSs are professionally trained and qualified to work on. However, there remains a challenge in finding solutions to the dilemma faced by HCSs regarding their wish to be informed about CCM procedures and linked with each other, while also managing the strain of additional requests and contact with the CCM due to limited (time) resources [ 62 ]. Hudon et al. (2023) suggest that optimizing time resources and improving exchange could involve meetings, information sharing via fax, e-mail, secure online platforms, or, prospectively, within the electronic patient record (EPR). The implementation of an EPR has shown promise in improving the quality of health care and time resources, when properly implemented [ 63 , 64 ]. The challenge lies ineffective information exchange between HCSs and CCM for optimal patient care. The prospect of time saving in the long run and at best for a financial incentive, e.g., when anchoring in the Social Security Code, will help best to win over the HCSs.If this crucial factor can be resolved, there is a chance that HCSs will thoroughly accept the CCM as an important pillar, benefiting not only PwsMS but also other complex patient groups, especially those with long-term neurological or complex oncological conditions that might run chronically.

Care and case management and implications for the health care system

The results of our study suggest that the cross-sectoral long-term advocacy CCM in the COCOS-MS trial, with continuous personal contacts at short intervals and constant reevaluation of needs, problems, resources and goals, is highly valued by PwsMS, caregivers, and HCSs. The trial addresses several key aspects that may have been overlooked in previous studies which have shown great potential for the integration of case management [ 17 , 47 , 62 , 65 , 66 ]. However, they often excluded the overriding care management, missed those patient groups with special severity and complexity who might struggle to reach social and health care structures independently or the interventions were not intended for long-term [ 22 , 37 ]. Our results indicate that the CCM intervention had a positive impact on PwsMS and caregivers as HCSs experienced them with benefits such as increased invigoration, reduced demands, and enhanced self-confidence. However, there was a notable loss experienced by PwsMS and caregivers after the completion of the CCM intervention, even if they had stabilized during the intervention period. The experiences of optimized social and health care for the addressed population, both at an individual and superordinate care level, support the integration of this service into standard care. Beyond the quantitatively measurable outcomes and economic considerations reported elsewhere [ 16 , 20 , 21 ], our results emphasize the importance of regaining control, self-efficacy, self-worth, dignity, autonomy, and social participation. These aspects are highlighted as preventive measures in suicidal contexts, which is particularly relevant for individuals with severe and complex illnesses [ 19 , 50 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 ]. Our findings further emphasize the societal responsibilities to offer individuals with severe and complex illnesses the opportunity to regain control and meaningful aspects of life, irrespective of purely economic considerations. This underscores the need for a comprehensive evaluation that not only takes into account quantitative measures but also the qualitative aspects of well-being and quality of life when making recommendations of a CCM in standard care.

The study by J. Y. Joo and Huber (2019) highlighted that CM interventions aligned with the standards of the Case Management Society of America varied in duration, ranging from 1 month to 15.9 years, and implemented in community- or hospital-based settings. However, they noted a limitation in understanding how CM processes unfold [ 67 ]. In contrast, our trial addressed this criticism by providing transparent explanations of the CCM process, which also extends to a superordinate care management [ 40 , 41 ]. Our CCM manual [ 40 ] outlines a standardized and structured procedure for measuring and reevaluating individual resources, problems, and unmet needs on predefined dimensions. It also identifies goals and actions at reducing unmet needs and improving the individual resources of PwsMS and caregivers. Importantly, the CCM manual demonstrates that the CCM process can be structured and standardized, while accounting for the unique aspects of each individual’s serious illness, disease courses, complex needs, available resources, and environmental conditions. Furthermore, the adaptability of the CCM manual to other complex chronically ill patient groups suggests the potential for a standardized approach in various health care settings. This standardized procedure allows for consistency in assessing and addressing the individual needs of patients, ensuring that the CCM process remains flexible while maintaining a structured and goal-oriented framework.

The discussion about the disintegration in the social and health care system and the increasing specialization dates back to 2009 [ 31 , 32 ]. Three strategies were identified to address this issue: (a) “driver-minimizing” [Treiberminimierende], (b) “effect-modifying” [Effektmodifizierende] and (c) “disintegration-impact-minimizing” [Desintegrationsfolgenminimierende] strategies. “Driver-minimizing strategies” involve comprehensive and radical changes within the existing health and social care system, requiring political and social pursuit. “Disintegration-impact-minimizing strategies” are strategies like quality management or tele-monitoring, which are limited in scope and effectiveness. “Effect-modifying strategies”, to which CCM belongs, acknowledges the segmentation within the system but aims to overcome it through cooperative, communicative, and integrative measures. CCM, being an “effect-modifying strategy”, operates the “integrated segmentation model” [Integrierte Segmentierung] rather than the “general contractor model” [Generalunternehmer-Modell] or “total service provider model” [Gesamtdienstleister-Modell] [ 31 , 32 ]. In this model, the advantage lies in providing an overarching and coordinating service to link different HCSs and services cross-sectorally. The superordinate care management aspect of the CCM plays a crucial role in identifying gaps in care, which is essential for future development strategies within the health and social care system. It aims to find or develop (regional) alternatives to ensure optimal care [ 17 , 23 , 24 , 68 , 69 ], using regional services of existing health and social care structures. Therefore, superordinate care management within the CCM process is decisive for reducing disintegration in the system.

Strengths and limitations

The qualitative study results of the explorative COCOS-MS clinical trial, which employed an integrated mixed-method design, provide valuable insights into the individual experiences of three leading stakeholders: PwsMS, caregivers and HCSs with a long-term cross-sectoral CCM. In addition to in-depth interviews, patient and caregiver reported outcome measurements were utilized and will be reported elsewhere. The qualitative study’s strengths include the inclusion of patients who, due to the severity of their condition (e.g. EDSS mean: 6.8, range: 6–8, highly active MS), age (mean: 53.9 years, range: 36–73 years) family constellations, are often underrepresented in research studies and often get lost in existing social and health care structures. The study population is specific to the wider district region of Cologne, but the broad inclusion criteria make it representative of severe MS in Germany. The methodological approach of a deductive and inductive structuring content analysis made it possible to include new findings into an existing theoretical framework.

However, the study acknowledges some limitations. While efforts were made to include more HCSs, time constraints on their side limited the number of interviews conducted and might have biased the results. Some professions are underrepresented in the interviews. Complex symptoms (e.g. fatigue, ability to concentrate), medical or therapeutic appointments and organization of the everyday live may have been reasons for the patients’ and caregivers’ interviews lasting shorter than initially planned.

The provision of functions of a CCM, might have pre-structured the answers of the participants.

At current, there is no support system for PwsMS, their caregivers and HCSs that addresses their complex and unmet needs comprehensively and continuously. There are rare qualitative insights of the three important stakeholders: PwsMS, caregivers and HCSs in one analysis about a supporting service like a CCM. In response to this gap, we developed and implemented a long-term cross-sectoral advocacy CCM and analyzed it qualitatively. PwsMS, their caregivers and HCSs expressed positive experiences, perceiving the CCM as a source of relief and support that improved care across various aspects of life. For patients, the CCM intervention resulted in enhanced autonomy, reviving of personal wellbeing and new established contacts with HCSs. Caregivers reported a reduced organizational burden and felt better informed, and HCSs experienced primarily temporal relief, allowing them to concentrate on their core professional responsibilities. At a higher level of care, the study suggests that the CCM contributed to a reduction in disintegration within the social and health care system.

The feedback from participants is seen as valuable for adapting the CCM intervention and the CCM manual for follow-up studies, involving further complex patient groups such as neurological long-term diseases apart from MS and tailoring the duration of the intervention depending on the complexity of evolving demands.

Availability of data and materials

Generated and/or analyzed datasets of participants are available from the corresponding author on reasonable request to protect participants. Preliminary partial results have been presented as a poster during the EAPC World Congress in June 2023 and the abstract has been published in the corresponding abstract booklet [ 70 ].

Abbreviations

Amyotrophic lateral sclerosis

• Care and case management

Case management

Central nervous system

Communication, Coordination and security for people with multiple sclerosis

Consolidated criteria for reporting qualitative research

German register for clinical studies

Extended disability status scale

Electronic patient record

Quality of life

Multiple sclerosis

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Acknowledgements

We would like to thank all the patients, caregivers and health care specialists who volunteered their time to participate in an interview and the trial, Carola Janßen for transcribing the interviews, Fiona Brown for translating the illustrative quotes and Beatrix Münzberg, Kerstin Weiß and Monika Höveler for data collection in the quantitative study part.

COCOS-MS Trial Group

Anne Müller 1 , Fabian Hebben 1 , Kim Dillen 1 , Veronika Dunkl 1 , Yasemin Goereci 2 , Raymond Voltz 1,3,4 , Peter Löcherbach 5 , Clemens Warnke 2 , Heidrun Golla 1 , Dirk Müller 6 , Dorthe Hobus 1 , Eckhard Bonmann 7 , Franziska Schwartzkopff 8 , Gereon Nelles 9 , Gundula Palmbach 8 , Herbert Temmes 10 , Isabel Franke 1 , Judith Haas 10 , Julia Strupp 1 , Kathrin Gerbershagen 7 , Laura Becker-Peters 8 , Lothar Burghaus 11 , Martin Hellmich 12 , Martin Paus 8 , Solveig Ungeheuer 1 , Sophia Kochs 1 , Stephanie Stock 6 , Thomas Joist 13 , Volker Limmroth 14

1 Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

2 Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

3 Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), University of Cologne, Cologne, Germany

4 Center for Health Services Research (ZVFK), University of Cologne, Cologne, Germany

5 German Society of Care and Case Management e.V. (DGCC), Münster, Germany

6 Institute for Health Economics and Clinical Epidemiology (IGKE), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

7 Department of Neurology, Klinikum Köln, Cologne, Germany

8 Clinical Trials Centre Cologne (CTCC), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

9 NeuroMed Campus, MedCampus Hohenlind, Cologne, Germany

10 German Multiple Sclerosis Society Federal Association (DMSG), Hannover, Germany

11 Department of Neurology, Heilig Geist-Krankenhaus Köln, Cologne, Germany

12 Institute of Medical Statistics and Computational Biology (IMSB), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

13 Academic Teaching Practice, University of Cologne, Cologne, Germany

14 Department of Neurology, Klinikum Köln-Merheim, Cologne, Germany

Open Access funding enabled and organized by Projekt DEAL. This work was supported by the Innovation Funds of the Federal Joint Committee (G-BA), grant number: 01VSF19029.

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Anne Müller, Fabian Hebben, Kim Dillen, Veronika Dunkl, Raymond Voltz & Heidrun Golla

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• Anne Müller
• , Fabian Hebben
• , Kim Dillen
• , Veronika Dunkl
• , Yasemin Goereci
• , Raymond Voltz
• , Peter Löcherbach
• , Clemens Warnke
• , Heidrun Golla
• , Dirk Müller
• , Dorthe Hobus
• , Eckhard Bonmann
• , Franziska Schwartzkopff
• , Gereon Nelles
• , Gundula Palmbach
• , Herbert Temmes
• , Isabel Franke
• , Judith Haas
• , Julia Strupp
• , Kathrin Gerbershagen
• , Laura Becker-Peters
• , Lothar Burghaus
• , Martin Hellmich
• , Martin Paus
• , Solveig Ungeheuer
• , Sophia Kochs
• , Stephanie Stock
• , Thomas Joist
•  & Volker Limmroth

Contributions

HG, KD, CW designed the trial. HG, KD obtained ethical approvals. HG, KD developed the interview guidelines with help of the CCM (SU). AM was responsible for collecting qualitative data, developing the code system, coding, analysis of the data and writing the first draft of the manuscript, thoroughly revised and partly rewritten by HG. FH supported in collecting qualitative data, coding and analysis of the interviews. KD supported in collecting qualitative data. AM, FH, KD, VD, YG, RV, PL, CW, HG discussed and con-solidated the finalized category system. AM, FH, KD, VD, YG, RV, PL, CW, HG read and commented on the manuscript and agreed to the final version.

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Participants were provided with oral and written information about the trial and provided written informed consent. Ethical approval was obtained from the Ethics Committee of the University of Cologne (#20–1436). The trial is registered in the German Register for Clinical Studies (DRKS) (DRKS00022771) and is conducted under the Declaration of Helsinki.

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Clemens Warnke has received institutional support from Novartis, Alexion, Sanofi Genzyme, Janssen, Biogen, Merck and Roche. The other authors declare that they have no competing interests.

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Müller, A., Hebben, F., Dillen, K. et al. “So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study. BMC Health Serv Res 24 , 453 (2024). https://doi.org/10.1186/s12913-024-10851-1

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Acceptability of Community Health Worker and Peer Supported Interventions for Minoritized Populations with Type 2 Diabetes: A Qualitative Systematic Review Provisionally Accepted

• 1 University of Birmingham, United Kingdom

The final, formatted version of the article will be published soon.

Ethnic minority groups in high income countries in North America, Europe, and elsewhere are disproportionately affected by T2DM with a higher risk of mortality and morbidity. The use of community health workers and peer supporters offer a way of ensuring the benefits of self-management support observed in the general population are shared by those in minoritized communities.The major databases were searched for existing qualitative evidence of participants' experiences and perspectives of self-management support for type 2 diabetes delivered by community health workers and peer supporters (CHWPs) in ethnically minoritized populations. The data were analysed using Sekhon's Theoretical Framework of Acceptability.The results are described within five domains of the framework of acceptability collapsed from seven for reasons of clarity and concision: Affective attitude described participants' satisfaction with CHWPs delivering the intervention including the open, trusting relationships that developed in contrast to those with clinical providers. In considering Burden and Opportunity Costs, participants reflected on the impact of health, transport, and the responsibilities of work and childcare on their attendance, alongside a lack of resources necessary to maintain healthy diets and active lifestyles. In relation to Cultural Sensitivity participants appreciated the greater understanding of the specific cultural needs and challenges exhibited by CHWPs. The evidence related to Intervention Coherence indicated that participants responded positively to the practical and applied content, the range of teaching materials, and interactive practical sessions. Finally, in examining the impact of Effectiveness and Self-efficacy participants described how they changed a range of healthrelated behaviours, had more confidence in dealing with their condition and interacting with senior clinicians and benefitted from the social support of fellow participants and CHWPs.Many of the same barriers around attendance and engagement adherence towith usual self-management support interventions delivered to general populations were observed, including lack of time and resource. However, the insight of CHWPs, their culturallysensitive and specific strategies for self-management and their development of trusting relationships presented considerable advantages.

Keywords: type 2 diabetes, self-management, Community Health, health inequalities, Ethnic minorities Library, Places of Worship, Sports centres, Community Halls, a Mixed methods studies

Received: 03 Oct 2023; Accepted: 26 Feb 2024.

Copyright: © 2024 Grant and Litchfield. 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) or licensor 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: Mx. Ian Litchfield, University of Birmingham, Birmingham, United Kingdom

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Published on 17.4.2024 in Vol 26 (2024)

This is a member publication of University College London (Jisc)

Twitter Analysis of Health Care Workers’ Sentiment and Discourse Regarding Post–COVID-19 Condition in Children and Young People: Mixed Methods Study

Authors of this article:

Original Paper

• Macarena Chepo 1 * , RN, BSN, MPH, PhD   ; 
• Sam Martin 2, 3 * , MSc, PhD   ; 
• Noémie Déom 2 , MSc   ; 
• Ahmad Firas Khalid 4 , MD, PhD   ; 
• Cecilia Vindrola-Padros 2 , BA, MA, PhD  

1 School of Nursing, Universidad Andrés Bello, Santiago, Chile

2 Department of Targeted Intervention, University College London, London, United Kingdom

3 Oxford Vaccine Group, Churchill Hospital, University of Oxford, Oxford, United Kingdom

4 Canadian Institutes of Health Research Health System Impact Fellowship, Centre for Implementation Research, Ottawa Hospital Research Institute, Otawa, ON, Canada

*these authors contributed equally

Corresponding Author:

Sam Martin, MSc, PhD

Department of Targeted Intervention

University College London

Charles Bell House 43-45

Foley Street

London, W1W 7TY

United Kingdom

Phone: 44 (0)20 3108 3232

Email: [email protected]

Background: The COVID-19 pandemic has had a significant global impact, with millions of cases and deaths. Research highlights the persistence of symptoms over time (post–COVID-19 condition), a situation of particular concern in children and young people with symptoms. Social media such as Twitter (subsequently rebranded as X) could provide valuable information on the impact of the post–COVID-19 condition on this demographic.

Objective: With a social media analysis of the discourse surrounding the prevalence of post–COVID-19 condition in children and young people, we aimed to explore the perceptions of health care workers (HCWs) concerning post–COVID-19 condition in children and young people in the United Kingdom between January 2021 and January 2022. This will allow us to contribute to the emerging knowledge on post–COVID-19 condition and identify critical areas and future directions for researchers and policy makers.

Methods: From a pragmatic paradigm, we used a mixed methods approach. Through discourse, keyword, sentiment, and image analyses, using Pulsar and InfraNodus, we analyzed the discourse about the experience of post–COVID-19 condition in children and young people in the United Kingdom shared on Twitter between January 1, 2021, and January 31, 2022, from a sample of HCWs with Twitter accounts whose biography identifies them as HCWs.

Results: We obtained 300,000 tweets, out of which (after filtering for relevant tweets) we performed an in-depth qualitative sample analysis of 2588 tweets. The HCWs were responsive to announcements issued by the authorities regarding the management of the COVID-19 pandemic in the United Kingdom. The most frequent sentiment expressed was negative. The main themes were uncertainty about the future, policies and regulations, managing and addressing the COVID-19 pandemic and post–COVID-19 condition in children and young people, vaccination, using Twitter to share scientific literature and management strategies, and clinical and personal experiences.

Conclusions: The perceptions described on Twitter by HCWs concerning the presence of the post–COVID-19 condition in children and young people appear to be a relevant and timely issue and responsive to the declarations and guidelines issued by health authorities over time. We recommend further support and training strategies for health workers and school staff regarding the manifestations and treatment of children and young people with post–COVID-19 condition.

Introduction

More than 3 years after the outbreak of the COVID-19 pandemic [ 1 ], the social, political, and economic impact of this phenomenon has been more than significant, considering >700 million worldwide cases and nearly 7 million people’s deaths [ 2 ]. Given the scale of the phenomenon, it is imperative for all countries to thoroughly examine the lessons gleaned from the pandemic, particularly regarding a matter that has raised significant concern among the populace: the long-term effects experienced by individuals who have had COVID-19, spanning weeks, months, or even years after their initial infection [ 3 ]. This phenomenon, referred to as post–COVID-19 condition (or more commonly “long COVID”), warrants careful consideration and analysis [ 4 ].

There is increasing information regarding the clinical manifestation of this condition, particularly in the adult population. The worldwide prevalence has been estimated at approximately 50% to 70% in individuals hospitalized during acute COVID-19 infection and 10% to 12% in vaccinated cases [ 5 ]. While children and young people have a low likelihood of severe COVID-19 infection [ 6 ], the information available to date indicates that the presence of post–COVID-19 condition in this group may be as disabling as in adults, reaching a prevalence rate of 23.4% (range 3.7%-66.5%) [ 7 ].

An agreed definition by the World Health Organization indicates that post–COVID-19 condition in children and young people is a condition that occurs “in individuals with a history of confirmed or probable SARS-CoV-2 infection when experiencing symptoms lasting at least two months which initially occurred within three months of acute COVID-19” [ 8 ]. Post–COVID-19 condition strongly impacts daily functioning and can develop or continue after COVID-19 infection and may fluctuate or relapse over time [ 4 , 8 , 9 ].

Among the symptoms most frequently attributable to post–COVID-19 condition in children and young people are fatigue, altered smell or anosmia, and anxiety [ 8 ]. However, other symptoms have also been reported, such as sleep disturbances, difficulty in concentrating, abdominal pain, myalgia or arthralgia, earache or ringing in ears, mood swings, persistent chest pain, stomach pain, light sensitivity, diarrhea, heart palpitations, and skin lesions [ 8 , 10 ]. One of England’s most significant studies is the Children and Young People With Long COVID study by Stephenson et al [ 11 ]. This national research matched longitudinal and cohort studies in adolescent individuals aged 11 to 17 years and found the presence of symptoms in 35.4% of the adolescent individuals who tested positive at baseline and 8.3% who of the adolescent individuals who tested negative at baseline. A total of 3 months after testing, 66.5% of those who tested positive and 53.3% of those who tested negative had any symptoms [ 11 ]. However, Stephenson et al [ 12 ] recently indicated that in a 6-month follow-up, the prevalence of specific symptoms reported at the time of the polymerase chain reaction testing decreased over time, where, for example, the prevalence of chills, fever, myalgia, cough, and sore throat among those who tested positive decreased from 10% to 25% to <3%.

As research on the symptoms, prevalence, and treatment of post–COVID-19 condition in children and young people continues, it is essential to add to the literature by developing studies that determine the condition’s impact on this group, considering that they are experiencing a range of unwanted symptoms that disrupt their quality of life and that of their families.

Considering that listening to the voices of families and health workers could be helpful to broaden the knowledge achieved in post–COVID-19 condition in children and young people, a powerful tool could be social media, such as Twitter (subsequently rebranded as X). With >3729 million daily active users, Twitter has become one of the most important social platforms in the world [ 13 ]. People used Twitter during the COVID-19 pandemic for different purposes, such as world leaders communicating with citizens [ 14 , 15 ], organizations monitoring movement [ 16 ], scientists studying public discourse around the pandemic [ 17 , 18 ], and researchers performing sentiment analysis [ 19 - 21 ]. In the case of physicians and health care workers (HCWs), Twitter has been used to share and evaluate scientific evidence, guidelines, and technical advice [ 22 - 24 ] and track the course and burden of disease [ 25 ].

Using the social media monitoring platform Pulsar [ 26 ], we aimed to explore HCWs’ perceptions concerning post–COVID condition in children and young people in the United Kingdom between January 2021 and January 2022. We aimed to contribute to the emerging knowledge on post–COVID-19 condition in children and young people and identify critical areas and future directions for researchers and policy makers.

We considered a mixed methods approach to be a pragmatic research paradigm. We analyzed data by conducting a Collaborative and Digital Analysis of Big Qualitative Data in Time Sensitive Contexts (LISTEN) [ 27 ]. This mixed methods analysis consisted of iterative cycles intercalating team discussion and using digital text and discourse analytics tools to analyze related social media data [ 27 ]. We used the LISTEN method to perform quantitative and qualitative analyses of Twitter posts, extracted through the Pulsar platform [ 26 ], related to the experience of post–COVID-19 condition in children and young people in the United Kingdom (eg, phrases, words, hashtags, videos, and images), published between January 1, 2021, and January 31, 2022. We created an advanced Boolean search for keywords mentioning “long COVID” and corelated words, hashtags, and symptoms; furthermore, we filtered for user accounts who identified as HCWs in their Twitter biography description ( Multimedia Appendix 1 ).

Quantitative analysis of all tweets included the following: (1) engagement analysis, where we specifically measured reactions to posts, for example, a retweet, a share, or a comment or quote made toward a tweet; (2) sentiment and emotion analysis, where we measured the positive or negative sentiment in the words and tone of each post within the context of post–COVID-19 condition and HCW’s roles ( Multimedia Appendix 2 ); (3) emotion analysis, where we measured the emotions expressed in the tweets, classified as sadness, anger, disgust, fear, and joy; (4) frequency analysis, where we observed the frequency of keywords and themes in the data set; (5) segmentation analysis, where we measured the key connections or relationships between keywords and their frequent use in the same context; (6) demographic analysis, where we measured the occupation, gender (man or woman or nonbinary or unknown), and city of origin related to the users posting tweets; and (7) analyses, where we evaluated the most influential accounts and the most mentioned websites.

Big qualitative analysis was carried out through thematic discourse analysis of the data sample, using InfraNodus [ 28 ], specifically analyzing the key themes and topics of concern expressed throughout the data set. A codebook was constructed based on the mapping of themes agreed upon by 3 researchers (ND, SM, and MC; Multimedia Appendix 3 ).

The principal investigators (ND, AFK, SM, and MC) interpreted and analyzed the data collected, following the recommendations for rigorous research provided by Creswell and Poth [ 29 ]. Using the LISTEN method [ 27 ], we aimed to show that the integration of qualitative insights through thematic analysis with the quantitative backing of topic modeling can offer a comprehensive view of the discourse. This mixed methods approach allows us to capture the richness of qualitative data while leveraging the objectivity of quantitative measures. Our initial data harvest of the larger corpus data from the Pulsar platform captured 300,000 tweets; this data harvest helped to underpin the software’s sentiment analysis modeling of this specific data set, providing a robust quantitative foundation. The addition of further qualitative data analyses from a smaller qualitative sample allowed for an in-depth understanding of nuanced conversations, particularly when exploring new or complex phenomena such as post–COVID-19 condition in children and young people, with the provision of insights into the context, subtext, and sentiment behind the tweets offering valuable snapshots of public perception and discourse. We used an iterative mixed methods approach, iterating between team discussions and using digital analytics tools to discern relevant themes from the Twitter data corpus. Specifically, we used InfraNodus for thematic analysis, which incorporates a topic modeling script for analyzing and identifying key topics of concern with a data set and provides a structured and objective interpretation of the data. The coding process involved 3 independent researchers (MC, SM, and ND), each with expertise in health care, social network analysis, and digital global health. When initial coding disagreements arose, we meticulously tagged any queries and discussed the posts in question. These instances led to 3 structured meetings wherein the research team deliberated collaboratively to resolve conflicting interpretations. This approach resulted in an 81.99% (2122/2588) initial intercoder agreement rate for the tweets analyzed. For the remaining instances where consensus was not initially reached, the majority rule was applied to finalize theme codings. To quantify the reliability of our coding procedure, with 81.99% (2122/2588) of the tweets coded identically, we used the Cohen κ score, which provides a measure of interrater agreement adjusted for chance. Including the calculation of all variations, this score was calculated to be approximately κ=0.70, indicating good agreement among the coders.

Ethical Considerations

The study only collected data from publicly accessible social networks that have been anonymized by various means, particularly by replacing all usernames and links with anonymous text and summaries of tweets that have been edited, retaining the original message, avoiding direct quotations being identifiable, and ensuring that no information is provided on the identity of the individuals who posted the content studied on the platform.

Internet research requires researchers to carefully consider guidelines to determine whether ethics approval and informed consent are needed [ 30 ]. On the basis of the terms set out by the Research Ethics Committee at the University College London [ 31 ], the study was considered exempt from formal ethics approval for the following reasons: (1) study involving information freely available in the public domain, such as published biographies, newspaper accounts of an individual’s activities, and published minutes of a meeting, that although is considered personal under the Data Protection Act, would not require ethics review; and (2) study involving anonymized records and data sets in the public domain, such as data sets available through the Office for National Statistics or the UK Data Archive where appropriate permissions have already been obtained and it is not possible to identify individuals from the information provided.

Therefore, we anonymized all records and data sets collected during the study to make identification impossible. We removed social media usernames from the data samples. No direct or easily traceable quotes have been included. These measures align with best practices [ 32 - 35 ]. While this study was beyond the scope of the human ethics committee, we adhered to the principles of ethics: beneficence, nonmaleficence, autonomy, and justice [ 36 ]. We collected and analyzed data through secure encrypted servers via the Meltwater and InfraNodus platforms.

Audience Analysis

During the period from January 2021 to January 2022, we obtained 300,000 tweets from 936 accounts. After filtering for relevant posts (refer to inclusion and exclusion criteria in Multimedia Appendix 1 ), we analyzed a sample of 2588 tweets using mixed methods analysis. In terms of gender (man, woman, nonbinary, or unknown), 32.88% (851/2588) were female individuals, 23.49% (608/2588) were male individuals, and 43.59% (1128/2588) were unknown. According to the description given in the user’s biography, the most frequently self-reported terms were “NHS” (582/2588, 22.49%), “health” (230/2588, 8.89%), “medical” (168/2588, 6.49%), “nurse” (166/2588, 6.41%), “clinical” (160/2588, 6.18%), “mum” (158/2588, 6.11%), “doctor” (145/2588, 5.6%), and “GP” (145/2588, 5.6%). In terms of city, tweets came mainly from London (958/2588, 37.02%), Newcastle upon Tyne (326/2588, 12.6%), Redcar (160/2588, 6.18%), Manchester (140/2588, 5.41%), and Bradford (111/2588, 4.29%).

Regarding profession described in the user’s biography, the most frequently mentioned roles were nurses (176/2588, 6.8%); medical roles, for example, paramedic and nursing assistant (173/2588, 6.68%); clinical roles, for example, surgeon, physiotherapist, and anesthesiologist (160/2588, 6.18%); general practitioners (GPs), for example, hospital GP or local surgery GP (142/2588, 5.49%); and physician (140/2588, 5.41%). The most frequent organization affiliated with was the National Health Service (587/2588, 22.68%).

Most Influential Accounts

One of the accounts that generated the highest number of mentions and, therefore, some of the most influence, as they were the ones that talked the most about post–COVID-19 condition in children and young people, was the account for @longcovidkids (593/2588, 22.91% tweets), related to the most shared website longcovidkids.org [ 37 ] , an international UK-based charity for families and children living with post–COVID-19 condition. Although the account was created in October 2020, it was first mentioned in our data collection timeline on January 1, 2021. It offers web support services, funding, and research participation and represents children and young people living with post–COVID-19 condition in expert forums, research panels, health organizations, and parliamentary groups. The other most shared web pages were theguardian.com (the United Kingdom) [ 38 ], bbc.co.uk (the United Kingdom) [ 39 ], peoplewith.com (the United States) [ 40 ], and ncbi.nlm.nih.gov (the United States) [ 41 ]. This shows that in the United Kingdom, there was a mixed influence of UK and US link resources linked to HCW Twitter users in the United Kingdom.

Keyword Analysis

The volume of social media engagement in the discussion about the post–COVID-19 condition experience in children and young people in the United Kingdom reached 1400 posts, 1550 engagements, and 1.9 million impressions. Overall, comments were very responsive to government decisions regarding the vaccination program and school closures ( Multimedia Appendix 4 ). During the first peak of comments in January 2021, the amount of discourse expanded leading up to March 2021, when there were different announcements of school closures, and the guidelines were delivered regarding the priority groups of the vaccination program (frontline HCW and people aged >80 years first). The highest engagement was between June and July 2021, which coincides with the government announcement regarding the availability of vaccines for people aged >18 years. The third peak of comments occurred in September 2021, the same month the authorities announced the extension of the vaccination program to children aged 12 to 15 years.

Top Keywords Analysis

The top words in posts associated with children and young people’s experience of post–COVID-19 condition in the United Kingdom were “Children” (352/2588, 13.6%), “kids” (160/2588, 6.18%), “people” (158/2588, 6.11%), “Young” (148/2588, 5.72%), and “schools” (83/2588, 3.21%). The top hashtags were #longcovid (1387/2588, 53.59%), #longcovidkids (448/2588, 17.31%), #covid19 (370/2588, 14.3%), and #covid (176/2588, 6.8%).

Sentiment and Emotions Analysis

According to sentiment analysis, 99.38% (2572/2588) of the posts reflected negative sentiments and 0.62% (16/2588) reflected positive sentiments. Negative sentiments were mainly associated with comments on hospitalization figures related to the COVID-19 pandemic, criticism of pandemic mitigation policies, and vaccination of children and young people. Furthermore, positive sentiments mainly concerned acknowledgments around decreasing numbers of community support groups.

The primary emotions identified were as follows:

• Sadness (1752/2588, 67.7%), such as in the following tweet:

@[Username] Really upset, after my tough on-call last night. Hospitalisations are still going up, and Gov announcement minismises the effect of long-COVID in adults and children. It’s so hard to keep spirits up today. But we’ll try and continue doing our best in the NHS.

• Joy (367/2588, 14.18%), such as in the following tweet:

@[Username] It’s been an amazing day! [...] I’ve been able to share the experience I’ve gained treating children and adolescents with Long COVID over the last year.

• Fear (233/2588, 9%), as seen in the following tweet:

@[Username] It’s really urgent that young people get the message that they need to get vaccinated. Long COVID is ruining many people’s lives! It’s not a lie or hypochondria, there are real, physiological changes, please understand!

Segmentation Analysis

This analysis revealed the critical clusters of conversation around the main topics of concern within the discourse network around post–COVID-19 condition. Comments were distributed in 4 key conversation segments as follows:

• People, schools, and prevention (1734/2588, 67%): Most of the comments related to measures taken in terms of COVID-19 prevention in schools, concern about the risk of exposure, and sharing experiences of infection in schools.
• Health, adults, and impact (401/2588, 15.49%): Comments mainly reflected concerns and uncertainty about the long-term effect of post–COVID-19 condition on both children and young people and adults.
• Cases, virus, and risk (326/2588, 12.6%): Comments reflected worries about the associated risks and long-term consequences attributable to post–COVID-19 condition (in both adults and children and young people) and the constant mutation of the virus, which will create a permanent risk in the population.
• Months, distress, and symptoms (106/2588, 4.1%): Some HCWs used Twitter to share how children and young people experience post–COVID-19 condition and the extent of these symptoms. Some HCWs exemplified certain typical manifestations, such as fatigue.

Discourse Analysis by Theme

To better understand the topics discussed from the segmentation analysis, we performed a discourse analysis of the key co-occurring themes and topics of concern shared within discussions regarding post–COVID-19 condition in children and young people. The following themes emerged ( Textbox 1 ): concern or uncertainty for the future, school attendance, mask protection from COVID-19, vaccine uptake, infection rates, policy (support or skepticism), understanding and visualizing symptoms, child mental health, access to care, community support, and research ( Figures 1 and 2 ).

• Concern for the future or uncertainty (615/2588, 23.76% tweets): Most comments showed a concern for the future, focusing on shared statistics regarding the rate and spread of infection in children and young people and how this would affect future health outcomes. Furthermore, this group expressed concern regarding political decisions; the presence of illness in loved ones; the eventual overload and response capacity of the health system in the face of an increase in post–COVID-19 condition cases; and the need for training of health care workers (HCWs) to deal with comorbid, potentially long-term symptoms ( Figure 1 A).
• Schools (460/2588, 17.77% tweets): Comments aimed to promote vaccination policies for schoolchildren and flexible measures regarding teachers’ work and attendance, considering cases of people with prolonged symptoms. In addition, several tweets expressed dissatisfaction with school risk mitigation measures, such as the use of face masks and air filters ( Figure 1 B).
• Vaccine (386/2588, 14.9% tweets): Most tweets from this group showed their disapproval of the constant changes in the government’s decisions regarding schools and priority groups for vaccination. Between March and June 2021, the first set of tweets criticized the lack of priority in the vaccination program for schoolchildren and other at-risk groups (such as teachers). Once the authorities announced a vaccination program for schoolchildren aged 12 to 15 years ( Multimedia Appendix 4 ), most comments promoted vaccination for this group. A few comments (78/2588, 3.01%) shared concerns about the vaccine’s efficacy for children, based on the experiences of COVID-19 reinfection in adults despite having received the recommended initial doses. However, to a lesser extent (26/2588, 1%), there was a refusal to vaccinate children, citing fear of possible adverse effects. Nonetheless, it is worth noting that the community frequently refuted such comments ( Figure 1 C).
• Share statistics (334/2588, 12.91% tweets): Frequently, HCWs shared statistical data, such as the number of affected children and young people, the number of post–COVID-19 condition cases, and hospital admissions and deaths. Some of these data were used to validate the existence of the post–COVID-19 phenomenon or to express concern about it ( Figure 1 D).
• Policy (316/2588, 12.21% tweets): The comments were responsive to the policies emanating from the authorities over time ( Multimedia Appendix 4 ). There were 5 main criticisms, including changes in school closure or opening policies; HCWs question why the authorities ignore the evidence of post–COVID-19 cases in children and young people, leading them to question whether decision makers have sufficient training to control the pandemic adequately; the failure to include teachers and school workers in the COVID-19 vaccination program as well as the younger population; the lack of mitigation measures in schools, such as improvements in ventilation systems and mandatory use of masks; and the herd immunity as a plan in the government’s hidden agenda , that is, to promote work and activate the economy ( Figure 1 E).
• “Proof” (280/2588, 10.82% tweets): Most tweets in this group argued regarding the existence of children and young people with post–COVID-19 condition through pictures; statistics; scientific papers; and personal, family, and professional experiences ( Figure 1 F).
• Signs and symptoms (189/2588, 7.3% tweets): Among the symptoms described, chronic fatigue and exhaustion were the most frequent symptoms, which prevent normal activities. Other symptoms were respiratory: dyspnea, chronic cough, and shortness of breath; gastrointestinal: acute or intense abdominal pain, nausea, bloating, gastroparesis, and change in smell or taste; muscular: severe joint pain, “painful foot” and difficulty with physical activity; mental health: anxiety and low mood; topical: rash, skin rashes, and redness and pain in the eyes; and nonspecific symptoms, such as chest pain, heart palpitations, constant high body temperature, precocious puberty, hormonal changes, and erectile dysfunction ( Figure 2 A).
• Face masks (119/2588, 4.6% tweets): Face masks were widely promoted, especially in schools, because HCWs considered them as a practical and straightforward strategy to control the pandemic ( Figure 2 B).
• Skepticism (101/2588, 3.9% tweets): Comments showed reticence toward post–COVID-19 condition in children and young people. Some of the arguments focused on a perceived lack of clarity in the clinical manifestations and stressed the need to better differentiate the post–COVID-19 condition from other related symptomatologies, such as mood disorders (eg, depression and anxiety due to confinement). In contrast, several arguments agreed on the need for more scientific evidence, arguing that post–COVID-19 condition in children and young people are isolated. Other users claimed not to know of such cases instead of calling post–COVID-19 condition in children and young people SMS text message an exaggeration. In addition, several arguments favored releasing restrictions for children and young people, particularly arguments related to the use of masks, because of possible associated risks, for example, hypoxia ( Figure 2 C).
• Mental health (54/2588, 2.09% tweets): Symptoms attributable to mental health problems in children and young people were also a concern. For instance, HCWs mentioned sadness, fear of infecting their family, anxiety regarding sick parents, stress, night terrors, self-harm, and suicidal ideation. Furthermore, users discussed a perceived lack of specific support for children and young people and their families in situations such as hospitalization; prolonged COVID-19 condition; admission to intensive care; and death of a family member, schoolmate, or teacher, all situations that triggered permanent stress in these groups ( Figure 2 D).
• Community support or asking for advice (93/2588, 3.59% tweets): Some HCWs used Twitter to ask for guidance on a specific issue or share experiences of having post–COVID-19 condition or caring for children and young people or family members. Furthermore, they shared informative infographics provided by experts regarding post–COVID-19 condition in children and young people ( Figure 2 E).
• Access to health care or treatment (72/2588, 2.78% tweets): Some HCWs mentioned the lack of specialist (cardiology) support, concerns regarding prolonged National Health Service burnout, and criticisms regarding how follow-up was carried out concerning the relative symptomatology of children and young people with post–COVID-19 condition. At the same time, opening new centers for children and young people with post–COVID-19 condition generated different reactions. On the one hand, some HCWs recognized it as a substantial development, but on the other hand, some HCWs recognized it as proof of the existence of post–COVID-19 condition in children and young people, which raised concerns for the future ( Figure 2 F).
• Research (52/2588, 2% tweets): Under this theme, tweets largely promoted study on post–COVID-19 condition in children and young people or highlighted the need for further study on the subject ( Figure 2 G).
• Images (57/2588, 2.2% tweets): Images shared were primarily from scientific studies, including infographics (from organizations such as National Health Service or @LongCovidKids) and visualization of children and young people’s symptoms, such as rashes, COVID-19 toe, and joint pain. Most infographics shared by organizations (and not individuals), such as the organization LongCovidKids, were related to statistics, such as the number of children and young people with post–COVID-19 condition or the quantification of the type of symptoms experienced. Shared photographs tended to show the more “visually recognizable” symptoms of post–COVID-19 condition, such as skin lesions, rashes, or inflammation. The less visible symptoms, such as chronic fatigue and neurological issues, were represented with photographs of children and young people lying, sleeping under blankets, or duvets or on hospital beds ( Figure 2 H).

Principal Findings

Our primary objective was to explore HCWs’ perceptions concerning post–COVID-19 condition in children and young people in the United Kingdom between January 2021 and January 2022. Our findings indicated that comments made by HCWs on Twitter were responsive to announcements issued by authorities regarding the management of the COVID-19 pandemic in the United Kingdom and associated regulations on the operation of schools. The most frequent feelings and emotions were negative, mainly sadness. In turn, we identified relevant themes for HCWs, such as uncertainty or concern about the future; policies; and regulations for the prevention, management, and addressing both COVID-19 and post–COVID-19 condition in children and young people; vaccination; and the use of Twitter as a strategy to share scientific literature, management strategies, and clinical and personal experiences.

Concern from HCWs regarding the policies for addressing the COVID-19 pandemic in the children and young people in the United Kingdom (including vaccination and schools) was a recurring theme in our findings. Furthermore, concern regarding the side effects of the COVID-19 vaccine and how the vaccine might interact with preexisting physiological symptoms of post–COVID-19 condition in children and young people was a topic of discussion. Similarly, the constant change in policy making in the United Kingdom, as public health bodies and governments have tried to understand and adapt to the emergence of post–COVID-19 condition, have added to the strength of this ongoing debate [ 42 ]. The lack of up-to-date evidence on post–COVID-19 condition in children and young people prompted HCWs to rely on Twitter during the pandemic to communicate relevant information. Twitter has a broad audience reach; is used as a communication tool by politicians, health bodies, and other key influences; and facilitates real-time updates [ 43 ]. During the pandemic, HCWs, primarily those in frontline roles and local response coordination, have often been challenged to become credible spokespersons for pandemic information [ 44 ]. Such credibility directly influences public confidence and decision-making, ultimately determining the success or failure of a public health intervention [ 43 ].

Furthermore, failures in risk communication could explain the presence of uncertainty and negative feelings associated with school regulations. When people are upset, distressed, or fearful, they often do not trust the authority, decrease the perceived validity of the communication received, and find information processing difficult [ 45 ]. In this regard, Fotheringham et al [ 46 ] indicated that during 2020, school leaders in the United Kingdom faced pressures and challenges related to translating and enacting school policies, particularly with the perceived lack of agency shared by the government concerning being able to translate centrally issued guidelines. In turn, Tomson et al [ 47 ] reported that the pandemic has negatively impacted the well-being of leaders in all types of schools and across all demographic groups, affecting their ability to think clearly and solve work-related problems. Given that the protection and care of children and young people health during the COVID-19 pandemic ultimately rests with school leaders, the search for support strategies that focus on the needs of these groups becomes an urgent necessity.

Findings in Relation to Other Studies

Using Twitter’s information, this is one of the first studies to capture health professionals’ perceptions of prolonged COVID-19 in the children and young people in the United Kingdom. However, other studies have addressed post–COVID-19 condition on this social network. Callard and Peregov [ 48 ] reviewed how, through social platforms such as Twitter, patients made the persistence and heterogeneity of COVID-19 symptoms visible, thus catapulting the inclusion of post–COVID-19 condition as a relevant phenomenon in clinical and policy debates. In contrast, other authors in the last 2 years have explored on various platforms (including Twitter) the persistence of symptoms and emotional impact after months of suspected and confirmed diagnosis of COVID-19 [ 49 - 55 ], including the period of vaccination. Furthermore, others have explored web discussions regarding this phenomenon [ 56 ]. Several of these authors agree on a perceived lack of support and specific resources from governmental bodies, a lack of information or clarity in the instructions given, and the absence of formal mechanisms to allow the voices of patients and the community to be heard. The above point is critical as it highlights the gap between the needs of the population and the response provided by policy makers, which not only translates into a gap in access to health services but also limits citizen participation in decision-making on the issues that affect their own health and increases distrust toward regulations and instructions issued by the government.

Implications for Policy and Practice

Several policy recommendations and implications are targeted at various stakeholders to consider while implementing future policy guidelines to address post–COVID-19 health care delivery. First, policy makers should consider investing appropriate resources to collect data regarding post–COVID-19 condition in children and young people, specifically on the impact of COVID-19 on the mental health of children and young people. This implies working closely with researchers to streamline data collection and reporting on post–COVID-19 condition. Second, policy makers should consider providing a basic level of psychosocial support with access to quality mental health and psychosocial support services for HCWs, school staff, parents, and children and young people experiencing post–COVID-19 condition. This implies strengthening health systems, community-based programming, and mobilization. Policies must include documenting the impact of mental health and psychosocial support interventions and innovative approaches to be more widely disseminated and scaled up across different contexts and target population groups. Third, to address the criticism around frequent changes in school closure and opening policies, decision makers should develop clear, easy-to-understand school mitigation plans informed by the best available evidence. The plans should incorporate teachers, school workers, and parents to ensure all voices are included in the policy plan. Fourth, policy makers should adopt a shared decision-making approach incorporating HCWs in the decision-making process for managing the COVID-19 pandemic. Finally, government decision makers should set post–COVID-19 pandemic recovery policies informed from a health equity perspective and how this affects children and young people living with post–COVID-19 condition, factoring in childhood, family income, housing, domestic violence, access to health care, and racism.

In terms of the needed clearer road map for recommendations to support training strategies for HCWs and school staff regarding post–COVID-19 condition in children and young people, we have outlined the following 10 steps.

Step 1: Data Collection and Analysis

Our study underlines the critical need for comprehensive data on post–COVID-19 condition’s impact on the mental health of children and young people. As a first step, it is recommended that policy makers should allocate resources for the systematic collection and analysis of data on post–COVID-19 condition in children and young people, particularly focusing on mental health outcomes. These data should be used to identify the most prevalent symptoms and the most effective treatment strategies. In this context, it is recommended that experts emphasize the importance of early detection and medical consultation for mental health issues in children and young people diagnosed with post–COVID-19 condition, including mood changes, irritability, social withdrawal, memory problems, difficulty in concentrating, anxiety, depression, posttraumatic stress, school absenteeism, and suicidal ideation [ 57 , 58 ]. This entails working closely with researchers to streamline data collection and reporting on post–COVID-19 condition.

Step 2: Psychosocial Support Framework

It has been noted that globally, programs for managing post–COVID-19 condition in children and young people are heterogeneous, ranging from the use of physiotherapy, pediatric occupational therapy, and psychological support to interventions aimed at lifestyle modifications [ 59 ]. This diversity could impact differential outcomes in the treatment, recovery, and timely and effective rehabilitation of children and young people with post–COVID-19 condition. Upon analyzing the wider literature and the social media data in this study, it is recommended that a basic level of psychosocial support should be established. This would involve ensuring access to quality mental health services for HCWs, school staff, parents, and children and young people with post–COVID-19 condition. This framework should be integrated into the health system and community-based programming, emphasizing the mobilization of resources and strengthening of support networks. It is suggested that the psychosocial support framework should facilitate access to quality mental health services and support networks that are robust and responsive. Community engagement gleaned from further Twitter discourse analysis should be a helpful guide in the development of these services to ensure they meet the real and expressed needs of children and young people with post–COVID-19 condition. Practical examples of basic psychosocial support include using web support services; individual or group therapy sessions; school-based emotional support programs; and counseling sessions aimed at parents, family members, or school staff.

Step 3: Educational Mitigation Plans

The frequent policy changes around school closures highlight the necessity for stable and clear educational mitigation plans. It is recommended that these plans should be directly informed by the evidence collected and further analysis of sentiments and emotions surrounding post–COVID-19 condition in schools. Incorporating the viewpoints of teachers, parents, and school staff, as identified in our thematic analysis, will ensure that the mitigation strategies are comprehensive, feasible, and sensitive to the psychosocial impact on children and young people. School staff and policy makers should collaborate to develop clear, evidence-informed educational mitigation plans. These plans should be straightforward and involve teachers, school workers, and parents in their creation, ensuring a unified approach that considers the voices of all stakeholders.

Step 4: Shared Decision-Making in Health Care

In health care settings, the adoption of a shared decision-making model is crucial, enabling HCWs to actively contribute to the formulation of COVID-19 and post–COVID-19 policies. This inclusive approach ensures that frontline workers can provide valuable insights toward policy development. To facilitate this, the establishment of advisory committees composed of representatives from HCWs is recommended. This committee can convene regularly to deliberate on key decisions pertaining to the COVID-19 pandemic management, including prevention measures, resource distribution, and vaccination strategies. Such collaborative groups have demonstrated effectiveness in identifying priority needs within the context of a pandemic [ 60 ].

Step 5: Health Equity in Policy Setting

Post–COVID-19 recovery policies should be set with a health equity lens. This means considering factors such as family income, housing, domestic violence, access to health care, and racism and how these factors affect children and young people living with post–COVID-19 condition. Our findings emphasize the importance of framing post–COVID-19 recovery policies through a lens of health equity. The concerns raised by HCWs regarding the socioeconomic impacts, such as family income and access to health care, underline the need for policies that address not just the medical aspects of post–COVID-19 condition but also the social determinants of health. An equitable approach will ensure that children and young people from diverse backgrounds receive appropriate support.

Step 6: Documenting and Disseminating Interventions

It is vital to document the impact of mental health and psychosocial support interventions. In this context, it is crucial to implement innovative strategies to disseminate unbiased information about post–COVID-19 condition among health care professionals and educators working with children and young people, ensuring it reaches different contexts and populations. These strategies may include creating interactive multimedia resources, such as videos and mobile apps; organizing webinars; actively using social media; and forming web support groups. These groups will provide a space where patients, health care professionals, and educators can share their experiences and knowledge regarding post–COVID-19 condition. These actions will not only help reduce isolation and social stigma but also strengthen support for these groups considered vulnerable [ 61 ].

Step 7: Developing a Clear Communication Strategy

Policy makers must develop a clear communication strategy to address frequent policy changes and mitigate confusion. This strategy should be informed by the data collected and analysis conducted in Step 1. The data reveal a palpable sense of uncertainty and frustration due to frequent policy shifts, underscoring the need for a clear and consistent communication strategy. This strategy should be grounded in the evidence gathered from the health care community’s discourse and aim to minimize confusion by providing timely, transparent, and reliable information regarding post–COVID-19 policies and support services.

Step 8: Training and Support Strategies

On the basis of the findings of the comprehensive data analysis, specific training and support strategies should be developed for HCWs and school staff. These strategies should be focused on the practical aspects of identifying and managing post–COVID-19 condition in children and young people. For instance, training sessions could include practical workshops on recognizing post–COVID-19 symptoms in children and adolescents, conducting diagnostic assessments, and implementing appropriate treatment and support interventions.

Step 9: Continuous Feedback and Policy Adaptation

The continuous evolution of the post–COVID-19 phenomenon demands an iterative approach to policy making. On the basis of our study, we recommend establishing feedback mechanisms with HCWs and school staff to monitor the reception and effectiveness of implemented policies. This feedback, coupled with ongoing research, should inform policy adaptations to ensure they remain aligned with the evolving landscape of post–COVID-19 condition and its impact on children and young people.

Step 10: Evaluation and Research

Finally, there should be a commitment to ongoing evaluation and research. This will involve not only monitoring the implementation of the abovementioned steps but also supporting new research to fill any remaining gaps in understanding the long-term effects of COVID-19 on children and young people.

This sequence of steps is designed to be iterative and responsive, ensuring that the recommendations from the study are translated into concrete actions that adapt to emerging data and research findings.

Strengths and Limitations

A key strength of this study is that our social media analysis of post–COVID-19 condition contributes toward an emerging understanding of reported experiential, emotional, and practical dimensions of post–COVID-19 condition in children and young people specifically and questions of vaccine hesitancy in children and young people with post–COVID-19 condition. This is one of the few studies to collect HCWs’ perceptions regarding post–COVID-19 condition in children and young people in the United Kingdom using information from Twitter. We identify key areas that need considering attention and focus, such as the provision of psychosocial support with access to quality mental health resources to alleviate the impact of post–COVID-19 condition in children and young people and the development of clear post–COVID-19 pandemic recovery guidelines that are informed by health equity perspective, and how this affects children and young people living with post–COVID-19 condition.

One of the limitations this study acknowledges is the definition of post–COVID-19 condition in children and young people. When data were collected, the lack of consensus on the definition of post–COVID-19 condition in children and young people forced us to formulate a definition of post–COVID-19 condition in children and young people based on the available literature. Furthermore, this study is limited to the perceptions of people who used descriptors in their web biography attributable to HCWs; therefore, our results only represent some HCWs in the United Kingdom and those in other countries. In turn, this research collected data from Twitter only; therefore, further inquiry into HCWs’ perceptions of post–COVID-19 condition in children and young people required expanding to other data sources or social networks and including languages other than English. We acknowledge that demographic factors, geographic location, and individual daily activities of social media users can significantly influence language use and word choice, introducing potential biases in tweet-based data. Such biases are inherent in any analysis of social media content and can affect the generalizability of findings. For instance, our study relies on Twitter data, which do not encompass the full spectrum of global or the UK public opinion on post–COVID-19 condition in children and young people. While Twitter serves as a valuable platform for capturing real-time sentiments and experiences, it is not fully representative of all demographics and geographic regions. Our results may reflect the perspectives of more vocal or active social media users, which may not correspond to the silent majority or those without access to social media. In addition, the absence of geotagged information for many users limits our ability to conduct a more nuanced spatial analysis of the sentiments expressed.

Furthermore, our study is built upon the recognition that social media data may overrepresent certain demographic groups while underrepresenting others, such as the older population or those without reliable internet access. This skew can influence the apparent prevalence of certain views or experiences of post–COVID-19 condition. Moreover, individuals’ patterns of daily life, reflected in their social media use and content, contribute additional layers of complexity and potential bias to the discourse analyzed.

Consistent with scholarly precedents on the subject [ 62 , 63 ], our study acknowledges these biases as intrinsic limitations of social media–based research. Although our analysis did not control for these factors, we recognize their potential impact on our results. Future studies would benefit from incorporating a broader array of data sources, including interviews or focus groups, to provide a more representative and comprehensive understanding of post–COVID-19 condition in children and young people. This approach would complement our Twitter-based findings and help mitigate the biases inherent in social media data.

Conclusions

More than a year after the start of the COVID-19 pandemic, the perceptions described on Twitter by HCWs concerning the presence of post–COVID-19 condition in children and young people appear to be a relevant and timely issue as well as very responsive to the declarations and guidelines issued by the health authorities over time. The most prominent group within the discourse studied was the activist or lobbying organization @LongCovidKids, which shared the most tweets and images over the period studied. We recommend that future research focus on how web health activism is organized and carried out for children and young people with post–COVID-19 condition. Such a strategy would allow for a better understanding of the scope and impact of this phenomenon and how it can influence decision-making. Furthermore, we suggest different mitigation strategies, support, and training of HCWs and school staff regarding manifestations and treatment of post–COVID-19 condition in children and young people across all demographic areas.

Acknowledgments

The authors would like to thank the Rapid Research Evaluation and Assessment Lab, Department of Targeted Intervention, University College London, London, United Kingdom, whose support has been essential for developing this project.

Conflicts of Interest

None declared.

Filters used for the search strategy on Twitter.

Sentiment analysis framework: attitudes toward post–COVID-19 condition in children and young people.

Theme codebook: examples of tweets that fit into main themes tagged for mention of children and young people with post–COVID-19 condition.

Timeline of national governmental policies and guidelines regarding children and young people.

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Abbreviations

Edited by A Mavragani; submitted 20.06.23; peer-reviewed by R Gore, A Wahbeh; comments to author 02.11.23; revised version received 14.02.24; accepted 08.03.24; published 17.04.24.

©Macarena Chepo, Sam Martin, Noémie Déom, Ahmad Firas Khalid, Cecilia Vindrola-Padros. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 17.04.2024.

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