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Qualitative Inquiry

Qualitative Inquiry

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Qualitative Inquiry provides an interdisciplinary forum for qualitative methodology and related issues in the human sciences. With Qualitative Inquiry you have access to lively dialogues, current research and the latest developments in qualitative methodology.

A Valuable Resource Whether you're a scholar, an applied researcher or a student, Qualitative Inquiry brings you the cross-disciplinary scholarship you need on qualitative research methodology.

Comprehensive Coverage The journal publishes open-peer reviewed research articles that experiment with manuscript form and content, and focus on methodological issues raised by qualitative research rather than the content or results of the research. Open to think-pieces and review essays, QI also addresses: Advances in specific methodological strategies or techniques · Key issues in qualitative research · Postmodern, post-structural and/or critical treatments of qualitative or interpretive work · Practical applications of qualitative research · Theoretical discussions on the philosophical bases of qualitative traditions

An Interdisciplinary Perspective The papers published in Qualitative Inquiry transcend disciplinary, racial, ethnic, gender, national and paradigmatic boundaries, presenting research from such varied fields as:

  • Anthropology
  • Communication
  • Cultural Studies
  • Family Studies
  • Gerontology
  • Oral History
  • Social Work

Current Scholarship Qualitative Inquiry covers diverse topics spanning many fields and disciplines. Recent articles have examined:

  • Body narratives
  • Data as drama
  • Debates between objectivists and social constructionists
  • Ethical proposals for the Internet
  • Fieldwork dilemmas
  • The politics of identity
  • Researching lives of women with HIV/AIDS
  • Revising family stories
  • Social construction of validity
  • Strategies for analyzing medical interviews
  • Qualitative models
  • Applied Social Sciences Index & Abstracts (ASSIA)
  • Clarivate Analytics: Current Contents - Physical, Chemical & Earth Sciences
  • Corporate ResourceNET - Ebsco
  • Current Citations Express
  • EBSCO: Vocational & Career Collection
  • ERIC (Education Resources Information Center)
  • Gale: Diversity Studies Collection
  • MasterFILE - Ebsco
  • ProQuest: Applied Social Science Index & Abstracts (ASSIA)
  • ProQuest: CSA Sociological Abstracts
  • ProQuest: International Bibliography of the Social Sciences (IBSS)
  • Social SciSearch
  • Social Sciences Citation Index (Web of Science)
  • Social Services Abstracts
  • Standard Periodical Directory (SPD)
  • Studies on Women Abstracts
  • TOPICsearch - Ebsco

It is with heavy hearts that we announce the passing of a true luminary in the world of academia, Norman K. Denzin. Please expect some delays in peer review as we transition through this difficult time. We appreciate your patience.

MANUSCRIPTS should be prepared in accordance with the 6th edition of the Publication Manual of the American Psychological Association . Double-space all manuscripts, including references, notes, abstracts, quotations, and tables on 8 1/2 x 11 paper. The title page should include all authors' names, affiliations, and highest professional degrees; the corresponding author's address and telephone number; and a brief biographical statement. The title page should be followed by an abstract of 100 to 150 words. Tables and references should follow APA style and be double-spaced throughout. Ordinarily, manuscripts will not exceed 30 pages (double-spaced), including tables, figures, and references. Authors of accepted manuscripts will be asked to supply camera-ready figures.

To submit the manuscript please access our online submission system at http://mc.manuscriptcentral.com/qi . If you have difficulties, please contact us at [email protected] . There are no submission fees for this journal.

Special Issue Proposal and Submission Guidelines:

When submitting a Special Issue proposal to Qualitative Inquiry , you must provide in writing:

  • a provisional title and abstract of 300-500 words on what the Special Issue intends to cover;
  • a rationale as to why this Special Issue is needed, what contribution it aims to make, if there have been any other special issues (or edited books) on this topic, etc.;
  • evidence of your qualifications to edit this Special Issue; and
  • a proposed timeline to publication starting with the Call for Papers.

When submitting the completed collection of manuscripts to serve as the Special Issue, you should keep in mind the following:

  • All manuscripts should have already been peer-reviewed and revised prior to submission; and
  • The Special Issue guest editor/s must submit his/her/their editorial introduction at this time, which shows how each article manuscript connects to the mandate of the journal, connects the special issue to the relevant literature in the field, and so forth.

Once we have received the completed Special Issue package of manuscripts, our office will conduct an internal review of each manuscript for content and clarity. Note the following:

  • Reviews of Special Issues will not begin until all of the manuscripts for the special issue, including the Introduction, have been received. For this reason, please do not submit the special issue in pieces; rather, submit them all at once; and
  • We reserve the right to reject special issues and/or individual articles at any point in the review process. For this reason, guest editors should not communicate that submissions have been accepted at any point. Final Acceptance of a manuscript/special issue can only be granted by the Editor of the journal.

All special issue proposals and queries should be directed to Michael Giardina, [email protected] .

Submission of a manuscript implies commitment to publish in the journal. Authors submitting manuscripts to the journal should not simultaneously submit them to another journal, nor should manuscripts have been published elsewhere in substantially similar form or with substantially similar content. Authors in doubt about what constitutes prior publication should consult the editor. Qualitative Inqu iry is an open-peer review journal.

Sage Choice and Open Access

If you or your funder wish your article to be freely available online to nonsubscribers immediately upon publication (gold open access), you can opt for it to be included in Sage Choice, subject to payment of a publication fee. The manuscript submission and peer review procedure is unchanged. On acceptance of your article, you will be asked to let Sage know directly if you are choosing Sage Choice. To check journal eligibility and the publication fee, please visit Sage Choice . For more information on open access options and compliance at Sage, including self author archiving deposits (green open access) visit Sage Publishing Policies on our Journal Author Gateway.

At Sage, we are committed to facilitating openness, transparency, and reproducibility of research. Where relevant, The Journal encourages authors to share their research data in a suitable public repository subject to ethical considerations and where data is included, to add a data accessibility statement in their manuscript file. Authors should also follow data citation principles. For more information please visit the Sage Author Gateway , which includes information about Sage’s partnership with the data repository Figshare.

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Criteria for Good Qualitative Research: A Comprehensive Review

  • Regular Article
  • Open access
  • Published: 18 September 2021
  • Volume 31 , pages 679–689, ( 2022 )

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  • Drishti Yadav   ORCID: orcid.org/0000-0002-2974-0323 1  

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This review aims to synthesize a published set of evaluative criteria for good qualitative research. The aim is to shed light on existing standards for assessing the rigor of qualitative research encompassing a range of epistemological and ontological standpoints. Using a systematic search strategy, published journal articles that deliberate criteria for rigorous research were identified. Then, references of relevant articles were surveyed to find noteworthy, distinct, and well-defined pointers to good qualitative research. This review presents an investigative assessment of the pivotal features in qualitative research that can permit the readers to pass judgment on its quality and to condemn it as good research when objectively and adequately utilized. Overall, this review underlines the crux of qualitative research and accentuates the necessity to evaluate such research by the very tenets of its being. It also offers some prospects and recommendations to improve the quality of qualitative research. Based on the findings of this review, it is concluded that quality criteria are the aftereffect of socio-institutional procedures and existing paradigmatic conducts. Owing to the paradigmatic diversity of qualitative research, a single and specific set of quality criteria is neither feasible nor anticipated. Since qualitative research is not a cohesive discipline, researchers need to educate and familiarize themselves with applicable norms and decisive factors to evaluate qualitative research from within its theoretical and methodological framework of origin.

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Introduction

“… It is important to regularly dialogue about what makes for good qualitative research” (Tracy, 2010 , p. 837)

To decide what represents good qualitative research is highly debatable. There are numerous methods that are contained within qualitative research and that are established on diverse philosophical perspectives. Bryman et al., ( 2008 , p. 262) suggest that “It is widely assumed that whereas quality criteria for quantitative research are well‐known and widely agreed, this is not the case for qualitative research.” Hence, the question “how to evaluate the quality of qualitative research” has been continuously debated. There are many areas of science and technology wherein these debates on the assessment of qualitative research have taken place. Examples include various areas of psychology: general psychology (Madill et al., 2000 ); counseling psychology (Morrow, 2005 ); and clinical psychology (Barker & Pistrang, 2005 ), and other disciplines of social sciences: social policy (Bryman et al., 2008 ); health research (Sparkes, 2001 ); business and management research (Johnson et al., 2006 ); information systems (Klein & Myers, 1999 ); and environmental studies (Reid & Gough, 2000 ). In the literature, these debates are enthused by the impression that the blanket application of criteria for good qualitative research developed around the positivist paradigm is improper. Such debates are based on the wide range of philosophical backgrounds within which qualitative research is conducted (e.g., Sandberg, 2000 ; Schwandt, 1996 ). The existence of methodological diversity led to the formulation of different sets of criteria applicable to qualitative research.

Among qualitative researchers, the dilemma of governing the measures to assess the quality of research is not a new phenomenon, especially when the virtuous triad of objectivity, reliability, and validity (Spencer et al., 2004 ) are not adequate. Occasionally, the criteria of quantitative research are used to evaluate qualitative research (Cohen & Crabtree, 2008 ; Lather, 2004 ). Indeed, Howe ( 2004 ) claims that the prevailing paradigm in educational research is scientifically based experimental research. Hypotheses and conjectures about the preeminence of quantitative research can weaken the worth and usefulness of qualitative research by neglecting the prominence of harmonizing match for purpose on research paradigm, the epistemological stance of the researcher, and the choice of methodology. Researchers have been reprimanded concerning this in “paradigmatic controversies, contradictions, and emerging confluences” (Lincoln & Guba, 2000 ).

In general, qualitative research tends to come from a very different paradigmatic stance and intrinsically demands distinctive and out-of-the-ordinary criteria for evaluating good research and varieties of research contributions that can be made. This review attempts to present a series of evaluative criteria for qualitative researchers, arguing that their choice of criteria needs to be compatible with the unique nature of the research in question (its methodology, aims, and assumptions). This review aims to assist researchers in identifying some of the indispensable features or markers of high-quality qualitative research. In a nutshell, the purpose of this systematic literature review is to analyze the existing knowledge on high-quality qualitative research and to verify the existence of research studies dealing with the critical assessment of qualitative research based on the concept of diverse paradigmatic stances. Contrary to the existing reviews, this review also suggests some critical directions to follow to improve the quality of qualitative research in different epistemological and ontological perspectives. This review is also intended to provide guidelines for the acceleration of future developments and dialogues among qualitative researchers in the context of assessing the qualitative research.

The rest of this review article is structured in the following fashion: Sect.  Methods describes the method followed for performing this review. Section Criteria for Evaluating Qualitative Studies provides a comprehensive description of the criteria for evaluating qualitative studies. This section is followed by a summary of the strategies to improve the quality of qualitative research in Sect.  Improving Quality: Strategies . Section  How to Assess the Quality of the Research Findings? provides details on how to assess the quality of the research findings. After that, some of the quality checklists (as tools to evaluate quality) are discussed in Sect.  Quality Checklists: Tools for Assessing the Quality . At last, the review ends with the concluding remarks presented in Sect.  Conclusions, Future Directions and Outlook . Some prospects in qualitative research for enhancing its quality and usefulness in the social and techno-scientific research community are also presented in Sect.  Conclusions, Future Directions and Outlook .

For this review, a comprehensive literature search was performed from many databases using generic search terms such as Qualitative Research , Criteria , etc . The following databases were chosen for the literature search based on the high number of results: IEEE Explore, ScienceDirect, PubMed, Google Scholar, and Web of Science. The following keywords (and their combinations using Boolean connectives OR/AND) were adopted for the literature search: qualitative research, criteria, quality, assessment, and validity. The synonyms for these keywords were collected and arranged in a logical structure (see Table 1 ). All publications in journals and conference proceedings later than 1950 till 2021 were considered for the search. Other articles extracted from the references of the papers identified in the electronic search were also included. A large number of publications on qualitative research were retrieved during the initial screening. Hence, to include the searches with the main focus on criteria for good qualitative research, an inclusion criterion was utilized in the search string.

From the selected databases, the search retrieved a total of 765 publications. Then, the duplicate records were removed. After that, based on the title and abstract, the remaining 426 publications were screened for their relevance by using the following inclusion and exclusion criteria (see Table 2 ). Publications focusing on evaluation criteria for good qualitative research were included, whereas those works which delivered theoretical concepts on qualitative research were excluded. Based on the screening and eligibility, 45 research articles were identified that offered explicit criteria for evaluating the quality of qualitative research and were found to be relevant to this review.

Figure  1 illustrates the complete review process in the form of PRISMA flow diagram. PRISMA, i.e., “preferred reporting items for systematic reviews and meta-analyses” is employed in systematic reviews to refine the quality of reporting.

figure 1

PRISMA flow diagram illustrating the search and inclusion process. N represents the number of records

Criteria for Evaluating Qualitative Studies

Fundamental criteria: general research quality.

Various researchers have put forward criteria for evaluating qualitative research, which have been summarized in Table 3 . Also, the criteria outlined in Table 4 effectively deliver the various approaches to evaluate and assess the quality of qualitative work. The entries in Table 4 are based on Tracy’s “Eight big‐tent criteria for excellent qualitative research” (Tracy, 2010 ). Tracy argues that high-quality qualitative work should formulate criteria focusing on the worthiness, relevance, timeliness, significance, morality, and practicality of the research topic, and the ethical stance of the research itself. Researchers have also suggested a series of questions as guiding principles to assess the quality of a qualitative study (Mays & Pope, 2020 ). Nassaji ( 2020 ) argues that good qualitative research should be robust, well informed, and thoroughly documented.

Qualitative Research: Interpretive Paradigms

All qualitative researchers follow highly abstract principles which bring together beliefs about ontology, epistemology, and methodology. These beliefs govern how the researcher perceives and acts. The net, which encompasses the researcher’s epistemological, ontological, and methodological premises, is referred to as a paradigm, or an interpretive structure, a “Basic set of beliefs that guides action” (Guba, 1990 ). Four major interpretive paradigms structure the qualitative research: positivist and postpositivist, constructivist interpretive, critical (Marxist, emancipatory), and feminist poststructural. The complexity of these four abstract paradigms increases at the level of concrete, specific interpretive communities. Table 5 presents these paradigms and their assumptions, including their criteria for evaluating research, and the typical form that an interpretive or theoretical statement assumes in each paradigm. Moreover, for evaluating qualitative research, quantitative conceptualizations of reliability and validity are proven to be incompatible (Horsburgh, 2003 ). In addition, a series of questions have been put forward in the literature to assist a reviewer (who is proficient in qualitative methods) for meticulous assessment and endorsement of qualitative research (Morse, 2003 ). Hammersley ( 2007 ) also suggests that guiding principles for qualitative research are advantageous, but methodological pluralism should not be simply acknowledged for all qualitative approaches. Seale ( 1999 ) also points out the significance of methodological cognizance in research studies.

Table 5 reflects that criteria for assessing the quality of qualitative research are the aftermath of socio-institutional practices and existing paradigmatic standpoints. Owing to the paradigmatic diversity of qualitative research, a single set of quality criteria is neither possible nor desirable. Hence, the researchers must be reflexive about the criteria they use in the various roles they play within their research community.

Improving Quality: Strategies

Another critical question is “How can the qualitative researchers ensure that the abovementioned quality criteria can be met?” Lincoln and Guba ( 1986 ) delineated several strategies to intensify each criteria of trustworthiness. Other researchers (Merriam & Tisdell, 2016 ; Shenton, 2004 ) also presented such strategies. A brief description of these strategies is shown in Table 6 .

It is worth mentioning that generalizability is also an integral part of qualitative research (Hays & McKibben, 2021 ). In general, the guiding principle pertaining to generalizability speaks about inducing and comprehending knowledge to synthesize interpretive components of an underlying context. Table 7 summarizes the main metasynthesis steps required to ascertain generalizability in qualitative research.

Figure  2 reflects the crucial components of a conceptual framework and their contribution to decisions regarding research design, implementation, and applications of results to future thinking, study, and practice (Johnson et al., 2020 ). The synergy and interrelationship of these components signifies their role to different stances of a qualitative research study.

figure 2

Essential elements of a conceptual framework

In a nutshell, to assess the rationale of a study, its conceptual framework and research question(s), quality criteria must take account of the following: lucid context for the problem statement in the introduction; well-articulated research problems and questions; precise conceptual framework; distinct research purpose; and clear presentation and investigation of the paradigms. These criteria would expedite the quality of qualitative research.

How to Assess the Quality of the Research Findings?

The inclusion of quotes or similar research data enhances the confirmability in the write-up of the findings. The use of expressions (for instance, “80% of all respondents agreed that” or “only one of the interviewees mentioned that”) may also quantify qualitative findings (Stenfors et al., 2020 ). On the other hand, the persuasive reason for “why this may not help in intensifying the research” has also been provided (Monrouxe & Rees, 2020 ). Further, the Discussion and Conclusion sections of an article also prove robust markers of high-quality qualitative research, as elucidated in Table 8 .

Quality Checklists: Tools for Assessing the Quality

Numerous checklists are available to speed up the assessment of the quality of qualitative research. However, if used uncritically and recklessly concerning the research context, these checklists may be counterproductive. I recommend that such lists and guiding principles may assist in pinpointing the markers of high-quality qualitative research. However, considering enormous variations in the authors’ theoretical and philosophical contexts, I would emphasize that high dependability on such checklists may say little about whether the findings can be applied in your setting. A combination of such checklists might be appropriate for novice researchers. Some of these checklists are listed below:

The most commonly used framework is Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007 ). This framework is recommended by some journals to be followed by the authors during article submission.

Standards for Reporting Qualitative Research (SRQR) is another checklist that has been created particularly for medical education (O’Brien et al., 2014 ).

Also, Tracy ( 2010 ) and Critical Appraisal Skills Programme (CASP, 2021 ) offer criteria for qualitative research relevant across methods and approaches.

Further, researchers have also outlined different criteria as hallmarks of high-quality qualitative research. For instance, the “Road Trip Checklist” (Epp & Otnes, 2021 ) provides a quick reference to specific questions to address different elements of high-quality qualitative research.

Conclusions, Future Directions, and Outlook

This work presents a broad review of the criteria for good qualitative research. In addition, this article presents an exploratory analysis of the essential elements in qualitative research that can enable the readers of qualitative work to judge it as good research when objectively and adequately utilized. In this review, some of the essential markers that indicate high-quality qualitative research have been highlighted. I scope them narrowly to achieve rigor in qualitative research and note that they do not completely cover the broader considerations necessary for high-quality research. This review points out that a universal and versatile one-size-fits-all guideline for evaluating the quality of qualitative research does not exist. In other words, this review also emphasizes the non-existence of a set of common guidelines among qualitative researchers. In unison, this review reinforces that each qualitative approach should be treated uniquely on account of its own distinctive features for different epistemological and disciplinary positions. Owing to the sensitivity of the worth of qualitative research towards the specific context and the type of paradigmatic stance, researchers should themselves analyze what approaches can be and must be tailored to ensemble the distinct characteristics of the phenomenon under investigation. Although this article does not assert to put forward a magic bullet and to provide a one-stop solution for dealing with dilemmas about how, why, or whether to evaluate the “goodness” of qualitative research, it offers a platform to assist the researchers in improving their qualitative studies. This work provides an assembly of concerns to reflect on, a series of questions to ask, and multiple sets of criteria to look at, when attempting to determine the quality of qualitative research. Overall, this review underlines the crux of qualitative research and accentuates the need to evaluate such research by the very tenets of its being. Bringing together the vital arguments and delineating the requirements that good qualitative research should satisfy, this review strives to equip the researchers as well as reviewers to make well-versed judgment about the worth and significance of the qualitative research under scrutiny. In a nutshell, a comprehensive portrayal of the research process (from the context of research to the research objectives, research questions and design, speculative foundations, and from approaches of collecting data to analyzing the results, to deriving inferences) frequently proliferates the quality of a qualitative research.

Prospects : A Road Ahead for Qualitative Research

Irrefutably, qualitative research is a vivacious and evolving discipline wherein different epistemological and disciplinary positions have their own characteristics and importance. In addition, not surprisingly, owing to the sprouting and varied features of qualitative research, no consensus has been pulled off till date. Researchers have reflected various concerns and proposed several recommendations for editors and reviewers on conducting reviews of critical qualitative research (Levitt et al., 2021 ; McGinley et al., 2021 ). Following are some prospects and a few recommendations put forward towards the maturation of qualitative research and its quality evaluation:

In general, most of the manuscript and grant reviewers are not qualitative experts. Hence, it is more likely that they would prefer to adopt a broad set of criteria. However, researchers and reviewers need to keep in mind that it is inappropriate to utilize the same approaches and conducts among all qualitative research. Therefore, future work needs to focus on educating researchers and reviewers about the criteria to evaluate qualitative research from within the suitable theoretical and methodological context.

There is an urgent need to refurbish and augment critical assessment of some well-known and widely accepted tools (including checklists such as COREQ, SRQR) to interrogate their applicability on different aspects (along with their epistemological ramifications).

Efforts should be made towards creating more space for creativity, experimentation, and a dialogue between the diverse traditions of qualitative research. This would potentially help to avoid the enforcement of one's own set of quality criteria on the work carried out by others.

Moreover, journal reviewers need to be aware of various methodological practices and philosophical debates.

It is pivotal to highlight the expressions and considerations of qualitative researchers and bring them into a more open and transparent dialogue about assessing qualitative research in techno-scientific, academic, sociocultural, and political rooms.

Frequent debates on the use of evaluative criteria are required to solve some potentially resolved issues (including the applicability of a single set of criteria in multi-disciplinary aspects). Such debates would not only benefit the group of qualitative researchers themselves, but primarily assist in augmenting the well-being and vivacity of the entire discipline.

To conclude, I speculate that the criteria, and my perspective, may transfer to other methods, approaches, and contexts. I hope that they spark dialog and debate – about criteria for excellent qualitative research and the underpinnings of the discipline more broadly – and, therefore, help improve the quality of a qualitative study. Further, I anticipate that this review will assist the researchers to contemplate on the quality of their own research, to substantiate research design and help the reviewers to review qualitative research for journals. On a final note, I pinpoint the need to formulate a framework (encompassing the prerequisites of a qualitative study) by the cohesive efforts of qualitative researchers of different disciplines with different theoretic-paradigmatic origins. I believe that tailoring such a framework (of guiding principles) paves the way for qualitative researchers to consolidate the status of qualitative research in the wide-ranging open science debate. Dialogue on this issue across different approaches is crucial for the impending prospects of socio-techno-educational research.

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Yadav, D. Criteria for Good Qualitative Research: A Comprehensive Review. Asia-Pacific Edu Res 31 , 679–689 (2022). https://doi.org/10.1007/s40299-021-00619-0

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An Introduction to Qualitative Inquiry

Catherine r. butler.

1 Division of Nephrology and Kidney Research InstituteUniversity of WashingtonSeattle, Washington

2 Veterans Affairs Health Services Research & Development Center of Innovation for Veteran-Centered and Value-Driven CareVA Puget Sound Health Care SystemSeattle, Washington

Ann M. O’Hare

Bryan r. kestenbaum, george g. sayre, susan p.y. wong.

Many aspects of care for people with kidney disease cannot be meaningfully understood in numerical terms, and benefit from a qualitative approach to inquiry. Qualitative methodologies were originally developed in the social sciences, but are increasingly used in medical research to address questions related to people's lived experiences of illness and care, the meanings they attribute to these experiences, and how health care processes and systems function. 1 In the nephrology literature, qualitative work has helped to identify those health outcomes that matter most to people with kidney disease and their families, 2 which has informed the design and testing of clinical interventions. Other studies have shed light on complex health care processes, such as kidney transplant donation 3 and medical decision making, 4 helping to identify targets for process improvement. Qualitative work may also offer a view into the lives of people with kidney disease, 5 which supports clinicians in better understanding, communicating with, and caring for this group.

Qualitative methods can be quite distinct from the quantitative methodologic approaches that are more familiar to many clinicians and members of the kidney research community. To help readers better understand and critically appraise qualitative work, we describe the key features of this approach and compare these with methodologic techniques and concepts in quantitative research ( Table 1 ).

Key concepts and terms in quantitative and qualitative methods

Qualitative research uses non-numeric naturalistic data ( e.g. , interviews, field notes, images, and documents) to construct rich description and/or explanatory frameworks that can deepen our understanding of complex phenomena. 1 To support this in-depth inquiry, subject recruitment, data collection, and interpretation typically occur simultaneously. Study subjects are selected according to the likelihood they will provide useful information on the phenomenon of interest (known as purposive sampling). 6 As data are collected, analysis begins with a process of coding in which the researcher identifies and names the concepts that appear in the data. 7 Preliminary analysis of data gathered from early subjects informs recruitment and data collection for later subjects with whom emerging concepts are probed more fully. Concepts are examined for inter-relationships and assembled into a theoretical framework that advances understanding of the phenomenon.

Where Is the Hypothesis?

Under a deductive approach to scientific inquiry, researchers begin with a theoretical understanding of a phenomenon, then design a hypothesis-based experiment that can support or oppose this theory. However, what can be learned from these kinds of studies is inherently constrained by this predetermined theory. This feature can be a major limitation when investigating complex or poorly described phenomena. In these situations, framing the study around a narrow question of uncertain relevance to the phenomenon of interest can result in a superficial, incomplete, or distorted understanding of the data.

Qualitative inquiry supports discovery or new perspectives on phenomena when existing theory describing these phenomena is inadequate or absent. To this end, qualitative work tends to be inductive, that is, research questions are intentionally open ended to allow the researcher to collect information even when its relevance to understanding the phenomenon of interest may have been unforseen. 8 Rather than investigate a predetermined theory through hypothesis testing, inductive inquiry aims to build a conceptual understanding of the phenomenon as this emerges directly from review of the data. A range of qualitative approaches are available to address research questions that are more or less open ended versus narrowly targeted.

In quantitative research, key elements of study design, such as the recruitment and analytic plan, are typically specified in advance. This approach is needed to avoid ad hoc changes to these parameters that may violate statistical assumptions.

Researchers conducting inductive qualitative work assume that at the beginning of the study, they do not know enough about the phenomenon of interest to be able to specify what data may be salient. Qualitative methodology is thus designed to support an iterative approach to recruitment and analysis in which formative steps inform later steps. 7 , 8 Subjects are intentionally chosen on the basis of characteristics ( e.g. , age, race, diagnosis, relationships, and roles) that make it likely that their experiences and perspectives will enhance the researchers’ understanding of the phenomenon of interest. As this understanding grows, subsequent purposive sampling and analysis is tailored to fill conceptual gaps or clarify aspects of an emerging conceptual framework.

The amount of information represented in a qualitative study tends to be driven by the density of concepts in the data, rather than by the number of subjects per se . Data collection is considered complete when the analysis reaches thematic saturation, that is, the point at which further sampling yields little new information about the phenomenon. 8 A relatively small number of subjects may be sufficient to construct a detailed and coherent description or explanatory framework. Although the number and types of subjects needed to reach saturation cannot be known in advance, for study planning purposes ( e.g. , institutional review board proposals, grant applications), researchers may estimate these parameters on the basis of experience with similar studies.

In many quantitative studies, inferential tests are used to judge the likelihood that study findings apply to the source population from which the sample was selected and inclusion of large numbers of participants generally support this possibility. Study findings may be considered more broadly generalizable if the study population is sufficiently representative of other groups or persons experiencing the condition under investigation.

It is not uncommon for qualitative studies to be conducted among a small group of subjects in a narrowly defined context. However, these features, which could limit the generalizability of quantitative study results, are not typically what determines the external relevance or value of qualitative study findings. A conceptual framework may be useful for understanding related phenomena among a different or broader group (a property known as transferability 6 ) if the studied and external settings share core features that contribute to this conceptual framework.

For example, in her ethnographic work to understand decision making among 27 terminally ill patients in San Francisco, the anthropologist Sharon Kaufman describes how the hospital system itself “organizes and constrains choice making.” 4 This conceptual framework has broad relevance beyond the specific population, context, and even phenomenon studied, not because the study sample is representative of these, but because the concept of hospital processes and culture shaping patients’ decision making may be relevant to understanding other instances of decision making in clinical contexts.

However, it is also important to recognize that the primary purpose of most qualitative work is to generate theory and/or provide rich contextual description, not to test the validity of study findings in other populations or contexts. 8 Rather, it is expected that the theoretical understanding of a phenomenon resulting from qualitative study will be expanded, deepened, and/or modified when applied to other contexts. Well-developed theoretical models can also provide a strong foundation for hypothesis formulation and quantitative testing.

Regardless of the methodology, researchers must strive to employ strategies in study design, data collection, and analysis to guard against their own biases. Approaches to support objectivity in quantitative research focus on limiting the ways in which the researcher is allowed to interact with the data ( e.g. , prespecified analytic plan), segregating the researcher from the data ( e.g. , double blinding), and ensuring study results are replicable.

Constructing theory and identifying meaning in qualitative analyses necessitate close interaction with the data, and it is understood that results will be a product of the researcher’s own interpretation. Instead of attempting to extract themselves from the analytic process, researchers engaged in qualitative work are trained to explicitly recognize, consider, and acknowledge their own perspectives and how these might shape their interpretation of the data. The backgrounds and relevant experiences of the researchers are typically reported in the methods sections of qualitative studies so that readers can take these factors into consideration as they review the study. 9 Results of different qualitative analyses of the same data may vary depending on who is conducting the research, and are thus not expected to be replicable. This subjectivity reflects the reality that complex phenomena can be understood in different ways, all of which may be conceptually valuable.

Multiple methodologic approaches have been developed to ensure that the findings of qualitative analyses reflect the authentic perspectives of study subjects or features of the source data. 6 Researchers introspectively monitor for how their perspectives may shape emerging themes and intentionally challenge assumptions that may have arisen from their own experience. During analysis, emerging themes are repeatedly checked against the original data to ensure findings are grounded in these data. 10 Multiple members of the research team may participate in data collection and coding to support the likelihood that results are not the product of any one researcher’s expectations, biases, or perspectives. Techniques such as member checking, in which preliminary results are returned to study participants to confirm that the findings resonate with their experiences, may provide further reassurance that study findings accurately capture their perspectives. The trustworthiness of these findings is also increased when similar or related conclusions arise from work conducted in other populations or settings, by different researchers, and/or using alternative methodologies (known as triangulation). 1

Although quantitative and qualitative approaches to scientific inquiry evolved to support the analysis of different kinds of data, these approaches can be highly complementary and mutually reinforcing. The diversity and complexity of scientific questions in health care calls for a range of methodologic tools, and learning how to integrate the results of qualitative research into our evidence base will help to advance knowledge and improve the care of people with kidney disease.

Disclosures

A. O'Hare having reports consultancy agreements with the Pathways Project (supported by a grant from the Moore foundation to the Coalition for the Supportive Care of Kidney Patients); reports receiving research funding from the Centers for Disease Control and Prevention, National Institutes of Health, and Veterans Affairs Health Services Research & Development; reports receiving honoraria from Chugai Pharmaceutical Co. Ltd., the Coalition for the Supportive Care of Kidney Patients, Dialysis Clinics Inc., Fresenius Medical Care, Fondation Devenir, Hammersmith Hospital, the Japanese Society of Dialysis Therapy, Kaiser Permanente Southern California, University of California San Francisco, University of Pennsylvania, and UpToDate; reports being a scientific advisor or member as the Associate Editor for American Journal of Kidney Diseases, on the Editorial Board of Advances in Kidney Disease and the Editorial Board for Journal of the American Medical Association Internal Medicine, on the external advisory panel to the National Institute of Diabetes and Digestive and Kidney Diseases for the Chronic Renal Insufficiency Cohort (CRIC) study, as Technical Expert Panel, Member of the Coalition for the Supportive Care of Kidney Patients, and Member of the United States Renal Data System Steering Committee. S. Wong reports receiving honoraria from the CRIC study Opportunity Pool Program; reports being a scientific advisor or member of the Editorial Board of Journal of the American Geriatrics Society and the Editorial Board of Clinical Journal of the American Society of Nephrology. All remaining authors have nothing to disclose.

Acknowledgments

C. Butler, A. O’Hare, B. Kestenbaum, G. Sayre, and S. Wong conceptualized the study and reviewed and edited the manuscript; C. Butler was responsible for project administration and wrote the original draft; and A. O’Hare and S. Wong provided supervision.

Published online ahead of print. Publication date available at www.jasn.org .

This paper is in the following e-collection/theme issue:

Published on 11.4.2024 in Vol 26 (2024)

Patients’ Experiences With Digitalization in the Health Care System: Qualitative Interview Study

Authors of this article:

Author Orcid Image

Original Paper

  • Christian Gybel Jensen 1 * , MA   ; 
  • Frederik Gybel Jensen 1 * , MA   ; 
  • Mia Ingerslev Loft 1, 2 * , MSc, PhD  

1 Department of Neurology, Rigshospitalet, Copenhagen, Denmark

2 Institute for People and Technology, Roskilde University, Roskilde, Denmark

*all authors contributed equally

Corresponding Author:

Mia Ingerslev Loft, MSc, PhD

Department of Neurology

Rigshospitalet

Inge Lehmanns Vej 8

Phone: 45 35457076

Email: [email protected]

Background: The digitalization of public and health sectors worldwide is fundamentally changing health systems. With the implementation of digital health services in health institutions, a focus on digital health literacy and the use of digital health services have become more evident. In Denmark, public institutions use digital tools for different purposes, aiming to create a universal public digital sector for everyone. However, this digitalization risks reducing equity in health and further marginalizing citizens who are disadvantaged. Therefore, more knowledge is needed regarding patients’ digital practices and experiences with digital health services.

Objective: This study aims to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients in the neurology field and address the following research questions: (1) How do patients use digital services and digital tools? (2) How do they experience them?

Methods: We used a qualitative design with a hermeneutic approach. We conducted 31 semistructured interviews with patients who were hospitalized or formerly hospitalized at the department of neurology in a hospital in Denmark. The interviews were audio recorded and subsequently transcribed. The text from each transcribed interview was analyzed using manifest content analysis.

Results: The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools. Our findings show that digital tools were experienced differently, and specific conditions were important for the possibility of engaging in digital practices, including having access to social resources; possessing physical, cognitive, and communicative capabilities; and feeling motivated, secure, and comfortable. These prerequisites were necessary for participants to have positive experiences using digital tools in the health care system. Those who did not have these prerequisites experienced challenges and, in some cases, felt left out.

Conclusions: Experiences with digital practices and digital health services are complex and multifaceted. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. To ensure that digitalization does not create inequities in health, it is necessary for developers and institutions to be aware of the differences in digital health literacy, focus on simplifying communication with patients and next of kin, and find flexible solutions for citizens who are disadvantaged.

Introduction

In 2022, the fourth most googled question in Denmark was, “Why does MitID not work?” [ 1 ]. MitID (My ID) is a digital access tool that Danes use to enter several different private and public digital services, from bank accounts to mail from their municipality or the state. MitID is a part of many Danish citizens’ everyday lives because the public sector in Denmark is digitalized in many areas. In recent decades, digitalization has changed how governments and people interact and has demonstrated the potential to change the core functions of public sectors and delivery of public policies and services [ 2 ]. When public sectors worldwide become increasingly digitalized, this transformation extends to the public health sectors as well, and some studies argue that we are moving toward a “digital public health era” that is already impacting the health systems and will fundamentally change the future of health systems [ 3 ]. While health systems are becoming more digitalized, it is important that both patients and digitalized systems adapt to changes in accordance with each other. Digital practices of people can be understood as what people do with and through digital technologies and how people relate to technology [ 4 ]. Therefore, it is relevant to investigate digital practices and how patients perceive and experience their own use of digital tools and services, especially in relation to existing digital health services. In our study, we highlight a broad perspective on experiences with digital practices and particularly add insight into the challenges with digital practices faced by patients who have acute or chronic illness, with some of them also experiencing physical, communicative, or cognitive difficulties.

An international Organization for Economic Cooperation and Development report indicates that countries are digitalized to different extents and in different ways; however, this does not mean that countries do not share common challenges and insights into the implementation of digital services [ 2 ].

In its global Digital Government Index, Denmark is presented as one of the leading countries when it comes to public digitalization [ 2 ]. Recent statistics indicate that approximately 97% of Danish families have access to the internet at home [ 5 ]. The Danish health sector already offers many different digital services, including web-based delivery of medicine, e-consultations, patient-related outcome questionnaires, and seeking one’s own health journal or getting test results through; “Sundhed” [ 6 ] (the national health portal) and “Sundhedsjournalen” (the electronic patient record); or the apps “Medicinkortet” (the shared medication record), “Minlæge” (My Doctor, consisting of, eg, communication with the general practitioner), or “MinSP” (My Health Platform, consisting of, eg, communication with health care staff in hospitals) [ 6 - 8 ].

The Danish Digital Health Strategy from 2018 aims to create a coherent and user-friendly digital public sector for everyone [ 9 ], but statistics indicate that certain groups in society are not as digitalized as others. In particular, the older population uses digital services the least, with 5% of people aged 65 to 75 years and 18% of those aged 75 to 89 years having never used the internet in 2020 [ 5 ]. In parts of the literature, it has been problematized how the digitalization of the welfare state is related to the marginalization of older citizens who are socially disadvantaged [ 10 ]. However, statistics also indicate that the probability of using digital tools increases significantly as a person’s experience of using digital tools increases, regardless of their age or education level [ 5 ].

Understanding the digital practices of patients is important because they can use digital tools to engage with the health system and follow their own health course. Researching experiences with digital practices can be a way to better understand potential possibilities and barriers when patients use digital health services. With patients becoming more involved in their own health course and treatment, the importance of patients’ health literacy is being increasingly recognized [ 11 ]. The World Health Organization defines health literacy as the “achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions” [ 12 ]. Furthermore, health literacy can be described as “a person’s knowledge and competencies to meet complex demands of health in modern society, ” and it is viewed as a critical step toward patient empowerment [ 11 , 12 ]. In a digitalized health care system, this also includes the knowledge, capabilities, and resources that individuals require to use and benefit from eHealth services, that is, “digital health literacy (eHealth literacy)” [ 13 ]. An eHealth literacy framework created by Norgaard et al [ 13 ] identified that different aspects, for example, the ability to process information and actively engage with digital services, can be viewed as important facets of digital health literacy. This argument is supported by studies that demonstrate how patients with cognitive and communicative challenges experience barriers to the use of digital tools and require different approaches in the design of digital solutions in the health sector [ 14 , 15 ]. Access to digital services and digital literacy is becoming increasingly important determinants of health, as people with digital literacy and access to digital services can facilitate improvement of health and involvement in their own health course [ 16 ].

The need for a better understanding of eHealth literacy and patients’ capabilities to meet public digital services’ demands as well as engage in their own health calls for a deeper investigation into digital practices and the use of digital tools and services from the perspective of patients with varying digital capabilities. Important focus areas to better understand digital practices and related challenges have already been highlighted in various studies. They indicate that social support, assessment of value in digital services, and systemic assessment of digital capabilities are important in the use and implementation of digital tools, and they call for better insight into complex experiences with digital services [ 13 , 17 , 18 ]. Therefore, we aimed to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients, addressing the following research questions: how do patients use digital services and digital tools, and how do they experience them?

We aimed to investigate digital practices and experiences with digital health services and digital tools; therefore, we used a qualitative design and adopted a hermeneutic approach as the point of departure, which means including preexisting knowledge of digital practices but also providing room for new comprehension [ 19 ]. Our interpretive approach is underpinned by the philosophical hermeneutic approach by Gadamer et al [ 19 ], in which they described the interpretation process as a “hermeneutic circle,” where the researcher enters the interpretation process with an open mind and historical awareness of a phenomenon (preknowledge). We conducted semistructured interviews using an interview guide. This study followed the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist [ 20 ].

Setting and Participants

To gain a broad understanding of experiences with public digital health services, a purposive sampling strategy was used. All 31 participants were hospitalized or formerly hospitalized patients in a large neurological department in the capital of Denmark ( Table 1 ). We assessed whether including patients from the neurological field would give us a broad insight into the experiences of digital practices from different perspectives. The department consisted of, among others, 8 inpatient units covering, for example, acute neurology and stroke units, from which the patients were recruited. Patients admitted to a neurological department can have both acute and transient neurological diseases, such as infections in the brain, stroke, or blood clot in the brain from which they can recover completely or have persistent physical and mental difficulties, or experience chronic neurological and progressive disorders such as Parkinson disease and dementia. Some patients hospitalized in neurological care will have communicative and cognitive difficulties because of their neurological disorders. Nursing staff from the respective units helped the researchers (CGJ, FGJ, and MIL) identify patients who differed in terms of gender, age, and severity of neurological illness. Some patients (6/31, 19%) had language difficulties; however, a speech therapist assessed them as suitable participants. We excluded patients with severe cognitive difficulties and those who were not able to speak the Danish language. Including patients from the field of neurology provided an opportunity to study the experience of digital health practice from various perspectives. Hence, the sampling strategy enabled the identification and selection of information-rich participants relevant to this study [ 21 ], which is the aim of qualitative research. The participants were invited to participate by either the first (CGJ) or last author (MIL), and all invited participants (31/31, 100%) chose to participate.

All 31 participants were aged between 40 to 99 years, with an average age of 71.75 years ( Table 1 ). Out of the 31 participants, 10 (32%) had physical disabilities or had cognitive or communicative difficulties due to sequela in relation to neurological illness or other physical conditions.

Data Collection

The 31 patient interviews were conducted over a 2-month period between September and November 2022. Of the 31 patients, 20 (65%) were interviewed face-to-face at the hospital in their patient room upon admission and 11 (35%) were interviewed on the phone after being discharged. The interviews had a mean length of 20.48 minutes.

We developed a semistructured interview guide ( Table 2 ). The interview questions were developed based on the research aim, findings from our preliminary covering of literature in the field presented in the Introduction section, and identified gaps that we needed to elaborate on to be able to answer our research question [ 22 ]. The semistructured interview guide was designed to support the development of a trusting relationship and ensure the relevance of the interviews’ content [ 22 ]. The questions served as a prompt for the participants and were further supported by questions such as “please tell me more” and “please elaborate” throughout the interview, both to heighten the level of detail and to verify our understanding of the issues at play. If the participant had cognitive or communicative difficulties, communication was supported using a method called Supported Communication for Adults with Aphasia [ 23 ] during the interview.

The interviews were performed by all authors (CGJ, FGJ, and MIL individually), who were skilled in conducting interviews and qualitative research. The interviewers are not part of daily clinical practice but are employed in the department of neurology from where the patients were recruited. All interviews were audio recorded and subsequently transcribed verbatim by all 3 authors individually.

a PRO: patient-related outcome.

Data Analysis

The text from each transcribed interview was analyzed using manifest content analysis, as described by Graneheim and Lundman [ 24 ]. Content analysis is a method of analyzing written, verbal, and visual communication in a systematic way [ 25 ]. Qualitative content analysis is a structured but nonlinear process that requires researchers to move back and forth between the original text and parts of the text during the analysis. Manifest analysis is the descriptive level at which the surface structure of the text central to the phenomenon and the research question is described. The analysis was conducted as a collaborative effort between the first (CGJ) and last authors (MIL); hence, in this inductive circular process, to achieve consistency in the interpretation of the text, there was continued discussion and reflection between the researchers. The transcriptions were initially read several times to gain a sense of the whole context, and we analyzed each interview. The text was initially divided into domains that reflected the lowest degree of interpretation, as a rough structure was created in which the text had a specific area in common. The structure roughly reflected the interview guide’s themes, as guided by Graneheim and Lundman [ 24 ]. Thereafter, the text was divided into meaning units, condensed into text-near descriptions, and then abstracted and labeled further with codes. The codes were categorized based on similarities and differences. During this process, we discussed the findings to reach a consensus on the content, resulting in the final 4 categories presented in this paper.

Ethical Considerations

The interviewees received oral and written information about the study and its voluntary nature before the interviews. Written informed consent was obtained from all participants. Participants were able to opt of the study at any time. Data were anonymized and stored electronically on locked and secured servers. The Ethics Committee of the Capitol Region in Denmark was contacted before the start of the study. This study was registered and approved by the ethics committee and registered under the Danish Data Protection Agency (number P2021-839). Furthermore, the ethical principles of the Declaration of Helsinki were followed for this study.

The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools.

Social Resources as a Digital Lifeline

Throughout the analysis, it became evident that access to both material and social resources was of great importance when using digital tools. Most participants already possessed and had easy access to a computer, smartphone, or tablet. The few participants who did not own the necessary digital tools told us that they did not have the skills needed to use these tools. For these participants, the lack of material resources was tied particularly to a lack of knowledge and know-how, as they expressed that they would not know where to start after buying a computer—how to set it up, connect it to the internet, and use its many systems.

However, possessing the necessary material resources did not mean that the participants possessed the knowledge and skill to use digital tools. Furthermore, access to material resources was also a question of having access to assistance when needed. Some participants who had access to a computer, smartphone, and tablet and knew how to use these tools still had to obtain help when setting up hardware, updating software, or getting a new device. These participants were confident in their own ability to use digital devices but also relied on family, friends, and neighbors in their everyday use of these tools. Certain participants were explicitly aware of their own use of social resources when expressing their thoughts on digital services in health care systems:

I think it is a blessing and a curse. I think it is both. I would say that if I did not have someone around me in my family who was almost born into the digital world, then I think I would be in trouble. But I feel sorry for those who do not have that opportunity, and I know quite a few who do not. They get upset, and it’s really frustrating. [Woman, age 82 years]

The participants’ use of social resources indicates that learning skills and using digital tools are not solely individual tasks but rather continuously involve engagement with other people, particularly whenever a new unforeseen problem arises or when the participants want a deeper understanding of the tools they are using:

If tomorrow I have to get a new ipad...and it was like that when I got this one, then I had to get XXX to come and help me move stuff and he was sweet to help with all the practical stuff. I think I would have cursed a couple of times (if he hadn’t been there), but he is always helpful, but at the same time he is also pedagogic so I hope that next time he showed me something I will be able to do it. [Man, age 71 years]

For some participants, obtaining assistance from a more experienced family member was experienced as an opportunity to learn, whereas for other participants, their use of public digital services was even tied directly to assistance from a spouse or family member:

My wife, she has access to mine, so if something comes up, she can just go in and read, and we can talk about it afterwards what (it is). [Man, age 85 years]

The participants used social resources to navigate digital systems and understand and interpret communication from the health care system through digital devices. Another example of this was the participants who needed assistance to find, answer, and understand questionnaires from the health care department. Furthermore, social resources were viewed as a support system that made participants feel more comfortable and safer when operating digital tools. The social resources were particularly important when overcoming unforeseen and new challenges and when learning new skills related to the use of digital tools. Participants with physical, cognitive, and communicative challenges also explained how social resources were of great importance in their ability to use digital tools.

Possessing the Necessary Capabilities

The findings indicated that possessing the desire and knowing how to use digital tools are not always enough to engage with digital services successfully. Different health issues can carry consequences for motor skills and mobility. Some of these consequences were visibly affecting how our participants interacted with digital devices, and these challenges were somewhat easy to discover. However, our participants revealed hidden challenges that posed difficulties. In some specific cases, cognitive and communicative inabilities can make it difficult to use digital tools, and this might not always be clear until the individual tries to use a device’s more complex functions. An example of this is that some participants found it easy to turn on a computer and use it to write but difficult to go through security measures on digital services or interpret and understand digital language. Remembering passwords and logging on to systems created challenges, particularly for those experiencing health issues that directly affect memory and cognitive abilities, who expressed concerns about what they were able to do through digital tools:

I think it is very challenging because I would like to use it how I used to before my stroke; (I) wish that everything (digital skills) was transferred, but it just isn’t. [Man, age 80 years]

Despite these challenges, the participants demonstrated great interest in using digital tools, particularly regarding health care services and their own well-being. However, sometimes, the challenges that they experienced could not be conquered merely by motivation and good intentions. Another aspect of these challenges was the amount of extra time and energy that the participants had to spend on digital services. A patient diagnosed with Parkinson disease described how her symptoms created challenges that changed her digital practices:

Well it could for example be something like following a line in the device. And right now it is very limited what I can do with this (iPhone). Now I am almost only using it as a phone, and that is a little sad because I also like to text and stuff, but I also find that difficult (...) I think it is difficult to get an overview. [Woman, age 62 years]

Some participants said that after they were discharged from the hospital, they did not use the computer anymore because it was too difficult and too exhausting , which contributed to them giving up . Using digital tools already demanded a certain amount of concentration and awareness, and some diseases and health conditions affected these abilities further.

Big Feelings as Facilitators or Barriers

The findings revealed a wide range of digital practices in which digital tools were used as a communication device, as an entertainment device, and as a practical and informative tool for ordering medicine, booking consultations, asking health-related questions, or receiving email from public institutions. Despite these different digital practices, repeating patterns and arguments appeared when the participants were asked why they learned to use digital tools or wanted to improve their skills. A repeating argument was that they wanted to “follow the times, ” or as a participant who was still not satisfied with her digital skills stated:

We should not go against the future. [Woman, age 89 years]

The participants expressed a positive view of the technological developments and possibilities that digital devices offered, and they wanted to improve their knowledge and skills related to digital practice. For some participants, this was challenging, and they expressed frustration over how technological developments “moved too fast ,” but some participants interpreted these challenges as a way to “keep their mind sharp. ”

Another recurring pattern was that the participants expressed great interest in using digital services related to the health care system and other public institutions. The importance of being able to navigate digital services was explicitly clear when talking about finding test answers, written electronic messages, and questionnaires from the hospital or other public institutions. Keeping up with developments, communicating with public institutions, and taking an interest in their own health and well-being were described as good reasons to learn to use digital tools.

However, other aspects also affected these learning facilitators. Some participants felt alienated while using digital tools and described the practice as something related to feelings of anxiety, fear, and stupidity as well as something that demanded “a certain amount of courage. ” Some participants felt frustrated with the digital challenges they experienced, especially when the challenges were difficult to overcome because of their physical conditions:

I get sad because of it (digital challenges) and I get very frustrated and it takes a lot of time because I have difficulty seeing when I look away from the computer and have to turn back again to find out where I was and continue there (...) It pains me that I have to use so much time on it. [Man, age 71 years]

Fear of making mistakes, particularly when communicating with public institutions, for example, the health care system, was a common pattern. Another pattern was the fear of misinterpreting the sender and the need to ensure that the written electronic messages were actually from the described sender. Some participants felt that they were forced to learn about digital tools because they cared a lot about the services. Furthermore, fears of digital services replacing human interaction were a recurring concern among the participants. Despite these initial and recurring feelings, some participants learned how to navigate the digital services that they deemed relevant. Another recurring pattern in this learning process was repetition, the practice of digital skills, and consistent assistance from other people. One participant expressed the need to use the services often to remember the necessary skills:

Now I can figure it out because now I’ve had it shown 10 times. But then three months still pass... and then I think...how was it now? Then I get sweat on my forehead (feel nervous) and think; I’m not an idiot. [Woman, age 82 years]

For some participants, learning how to use digital tools demanded time and patience, as challenges had to be overcome more than once because they reappeared until the use of digital tools was more automatized into their everyday lives. Using digital tools and health services was viewed as easier and less stressful when part of everyday routines.

Life Without Digital Tools: Not a Free Choice

Even though some participants used digital tools daily, other participants expressed that it was “too late for them.” These participants did not view it as a free choice but as something they had to accept that they could not do. They wished that they could have learned it earlier in life but did not view it as a possibility in the future. Furthermore, they saw potential in digital services, including digital health care services, but they did not know exactly what services they were missing out on. Despite this lack of knowledge, they still felt sad about the position they were in. One participant expressed what she thought regarding the use of digital tools in public institutions:

Well, I feel alright about it, but it is very, very difficult for those of us who do not have it. Sometimes you can feel left out—outside of society. And when you do not have one of those (computers)...A reference is always made to w and w (www.) and then you can read on. But you cannot do that. [Woman, age 94 years]

The feeling of being left out of society was consistent among the participants who did not use digital tools. To them, digital systems seemed to provide unfair treatment based on something outside of their own power. Participants who were heavily affected by their medical conditions and could not use digital services also felt left out because they saw the advantages of using digital tools. Furthermore, a participant described the feelings connected to the use of digital tools in public institutions:

It is more annoying that it does not seem to work out in my favour. [Woman, age 62 years]

These statements indicated that it is possible for individuals to want to use digital tools and simultaneously find them too challenging. These participants were aware that there are consequences of not using digital tools, and that saddens them, as they feel like they are not receiving the same treatment as other people in society and the health care system.

Principal Findings

The insights from our findings demonstrated that our participants had different digital practices and different experiences with digital tools and services; however, the analysis also highlighted patterns related to how digital services and tools were used. Specific conditions were important for the possibility of digital practice, including having access to social resources; possessing the necessary capabilities; and feeling motivated, secure, and comfortable . These prerequisites were necessary to have positive experiences using digital tools in the health care system, although some participants who lived up to these prerequisites were still skeptical toward digital solutions. Others who did not live up to these prerequisites experienced challenges and even though they were aware of opportunities, this awareness made them feel left out. A few participants even viewed the digital tools as a threat to their participation in society. This supports the notion of Norgaard et al [ 13 ] that the attention paid to digital capability demands from eHealth systems is very important. Furthermore, our findings supported the argument of Hjeltholt and Papazu [ 17 ] that it is important to better understand experiences related to digital services. In our study, we accommodate this request and bring forth a broad perspective on experiences with digital practices; we particularly add insight into the challenges with digital practices for patients who also have acute or chronic illness, with some of them also experiencing physical, communicative, and cognitive difficulties. To our knowledge, there is limited existing literature focusing on digital practices that do not have a limited scope, for example, a focus on perspectives on eHealth literacy in the use of apps [ 26 ] or intervention studies with a focus on experiences with digital solutions, for example, telemedicine during the COVID-19 pandemic [ 27 ]. As mentioned by Hjeltholt et al [ 10 ], certain citizens are dependent on their own social networks in the process of using and learning digital tools. Rasi et al [ 28 ] and Airola et al [ 29 ] argued that digital health literacy is situated and should include the capabilities of the individual’s social network. Our findings support these arguments that access to social resources is an important condition; however, the findings also highlight that these resources can be particularly crucial in the use of digital health services, for example, when interpreting and understanding digital and written electronic messages related to one’s own health course or when dealing with physical, cognitive, and communicative disadvantages. Therefore, we argue that the awareness of the disadvantages is important if we want to understand patients’ digital capabilities, and the inclusion of the next of kin can be evident in unveiling challenges that are unknown and not easily visible or when trying to reach patients with digital challenges through digital means.

Studies by Kayser et al [ 30 ] and Kanoe et al [ 31 ] indicated that patients’ abilities to interpret and understand digital health–related services and their benefits are important for the successful implementation of eHealth services—an argument that our findings support. Health literacy in both digital and physical contexts is important if we want to understand how to better design and implement services. Our participants’ statements support the argument that communication through digital means cannot be viewed as similar to face-to-face communication and that an emphasis on digital health literacy demonstrates how health systems are demanding different capabilities from the patients [ 13 ]. We argue that it is important to communicate the purposes of digital services so that both the patient and their next of kin know why they participate and how it can benefit them. Therefore, it is important to make it as clear as possible that digital health services can benefit the patient and that these services are developed to support information, communication, and dialogue between patients and health professionals. However, our findings suggest that even after interpreting and understanding the purposes of digital health services, some patients may still experience challenges when using digital tools.

Therefore, it is important to understand how and why patients learn digital skills, particularly because both experience with digital devices and estimation of the value of digital tools have been highlighted as key factors for digital practices [ 5 , 18 ]. Our findings indicate that a combination of these factors is important, as recognizing the value of digital tools was not enough to facilitate the necessary learning process for some of our participants. Instead, our participants described the use of digital tools as complex and continuous processes in which automation of skills, assistance from others, and time to relearn forgotten knowledge were necessary and important facilitators for learning and understanding digital tools as well as becoming more comfortable and confident in the use of digital health services. This was particularly important, as it was more encouraging for our participants to learn digital tools when they felt secure, instead of feeling afraid and anxious, a point that Bailey et al [ 18 ] also highlighted. The value of digital solutions and the will to learn were greater when challenges were viewed as something to overcome and learn from instead of something that created a feeling of being stupid. This calls for attention on how to simplify and explain digital tools and services so that users do not feel alienated. Our findings also support the argument that digital health literacy should take into account emotional well-being related to digital practice [ 32 ].

The various perspectives that our participants provided regarding the use of digital tools in the health care system indicate that patients are affected by the use of digital health services and their own capabilities to use digital tools. Murray et al [ 33 ] argued that the use of digital tools in health sectors has the potential to improve health and health delivery by improving efficacy, efficiency, accessibility, safety, and personalization, and our participants also highlighted these positive aspects. However, different studies found that some patients, particularly older adults considered socially vulnerable, have lower digital health literacy [ 10 , 34 , 35 ], which is an important determinant of health and may widen disparities and inequity in health care [ 16 ]. Studies on older adult populations’ adaptation to information and communication technology show that engaging with this technology can be limited by the usability of technology, feelings of anxiety and concern, self-perception of technology use, and the need for assistance and inclusive design [ 36 ]. Our participants’ experiences with digital practices support the importance of these focus areas, especially when primarily older patients are admitted to hospitals. Furthermore, our findings indicate that some older patients who used to view themselves as being engaged in their own health care felt more distanced from the health care system because of digital services, and some who did not have the capabilities to use digital tools felt that they were treated differently compared to the rest of society. They did not necessarily view themselves as vulnerable but felt vulnerable in the specific experience of trying to use digital services because they wished that they were more capable. Moreover, this was the case for patients with physical and cognitive difficulties, as they were not necessarily aware of the challenges before experiencing them. Drawing on the phenomenological and feministic approach by Ahmed [ 37 ], these challenges that make patients feel vulnerable are not necessarily visible to others but can instead be viewed as invisible institutional “walls” that do not present themselves before the patient runs into them. Some participants had to experience how their physical, cognitive, or communicative difficulties affected their digital practice to realize that they were not as digitally capable as they once were or as others in society. Furthermore, viewed from this perspective, our findings could be used to argue that digital capabilities should be viewed as a privilege tied to users’ physical bodies and that digital services in the health care system are indirectly making patients without this privilege vulnerable. This calls for more attention to the inequities that digital tools and services create in health care systems and awareness that those who do not use digital tools are not necessarily indifferent about the consequences. Particularly, in a context such as the Danish one, in which the digital strategy is to create an intertwined and user-friendly public digital sector for everyone, it needs to be understood that patients have different digital capabilities and needs. Although some have not yet had a challenging experience that made them feel vulnerable, others are very aware that they receive different treatment and feel that they are on their own or that the rest of the society does not care about them. Inequities in digital health care, such as these, can and should be mitigated or prevented, and our investigation into the experiences with digital practices can help to show that we are creating standards and infrastructures that deliberately exclude the perspectives of those who are most in need of the services offered by the digital health care system [ 8 ]. Therefore, our findings support the notions that flexibility is important in the implementation of universal public digital services [ 17 ]; that it is important to adjust systems in accordance with patients’ eHealth literacy and not only improve the capabilities of individuals [ 38 ]; and that the development and improvement of digital health literacy are not solely an individual responsibility but are also tied to ways in which institutions organize, design, and implement digital tools and services [ 39 ].

Limitations

This qualitative study provided novel insights into the experiences with public digital health services from the perspective of patients in the Danish context, enabling a deeper understanding of how digital health services and digital tools are experienced and used. This helps build a solid foundation for future interventions aimed at digital health literacy and digital health interventions. However, this study has some limitations. First, the study was conducted in a country where digitalization is progressing quickly, and people, therefore, are accustomed to this pace. Therefore, readers must be aware of this. Second, the study included patients with different neurological conditions; some of their digital challenges were caused or worsened by these neurological conditions and are, therefore, not applicable to all patients in the health system. However, the findings provided insights into the patients’ digital practices before their conditions and other challenges not connected to neurological conditions shared by patients. Third, the study was broad, and although a large number of informants was included, from a qualitative research perspective, we would recommend additional research in this field to develop interventions that target digital health literacy and the use of digital health services.

Conclusions

Experiences with digital tools and digital health services are complex and multifaceted. The advantages in communication, finding information, or navigating through one’s own health course work as facilitators for engaging with digital tools and digital health services. However, this is not enough on its own. Furthermore, feeling secure and motivated and having time to relearn and practice skills are important facilitators. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges that require assistance. Digitalization of the health care system means that patients do not have the choice to opt out of using digital services without having consequences, resulting in them receiving a different treatment than others. To ensure digitalization does not create inequities in health, it is necessary for developers and the health institutions that create, design, and implement digital services to be aware of differences in digital health literacy and to focus on simplifying communication with patients and next of kin through and about digital services. It is important to focus on helping individuals meet the necessary conditions and finding flexible solutions for those who do not have the same privileges as others if the public digital sector is to work for everyone.

Acknowledgments

The authors would like to thank all the people who gave their time to be interviewed for the study, the clinical nurse specialists who facilitated interviewing patients, and the other nurses on shift who assisted in recruiting participants.

Conflicts of Interest

None declared.

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Abbreviations

Edited by A Mavragani; submitted 14.03.23; peer-reviewed by G Myreteg, J Eriksen, M Siermann; comments to author 18.09.23; revised version received 09.10.23; accepted 27.02.24; published 11.04.24.

©Christian Gybel Jensen, Frederik Gybel Jensen, Mia Ingerslev Loft. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 11.04.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

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  15. Qualitative Inquiry

    Qualitative Inquiry explores research in Aesthetics and the adjacent study of Poetry. The in-depth study on Poetry also explores topics in the intersecting field of Narrative. The journal held discussions to help close the divide between the fields of 2019-20 coronavirus outbreak and Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2 ...

  16. Weekly Report

    4th Annual Peace and Conflict Studies - Journal Call for Abstracts (Deadline: April 30, 2024) 20th International Congress of Qualitative Inquiry (QI2024) May 15-18, 2024 (in-person) and May 29-31 (virtual) - Call for Submissions. Introductory Interpretative Phenomenological Analysis (IPA) Virtual Training Workshops by Jonathan Smith - 2 ...

  17. Journal of Medical Internet Research

    This paper is in the following e-collection/theme issue: eHealth Literacy / Digital Literacy (328) Focus Groups and Qualitative Research for Human Factors Research (700) Adoption and Change Management of eHealth Systems (639) Health Care Quality and Health Services Research (211) Health Literacy, Health Numeracy, and Numeracy (14) Demographics of Users, Social & Digital Divide (651)

  18. Relationality as Relationalities and a Model of Human (and Other

    Based on the most recent meeting of the International Congress of Qualitative Inquiry (2023), it is clear that using theories of relationality to situate our work is on the rise. ... This article was published in International Review of Qualitative Research. VIEW ALL JOURNAL METRICS. Article usage * Total views and downloads: 0 * Article usage ...

  19. Co-operative inquiry: Qualitative methodology transforming research

    Co-operative inquiry, pioneered by Heron and Reason, is a qualitative, participatory methodology that powerfully transforms research from inquiring about people to inquiring with people. Contemporary qualitative research is increasingly trending from studying others to engaging all participants in research processes as equal collaborators.