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  • What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on June 19, 2020 by Pritha Bhandari . Revised on June 22, 2023.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analyzing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

  • How does social media shape body image in teenagers?
  • How do children and adults interpret healthy eating in the UK?
  • What factors influence employee retention in a large organization?
  • How is anxiety experienced around the world?
  • How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, other interesting articles, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography , action research , phenomenological research, and narrative research. They share some similarities, but emphasize different aims and perspectives.

Note that qualitative research is at risk for certain research biases including the Hawthorne effect , observer bias , recall bias , and social desirability bias . While not always totally avoidable, awareness of potential biases as you collect and analyze your data can prevent them from impacting your work too much.

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types of qualitative research methodology

Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

  • Observations: recording what you have seen, heard, or encountered in detailed field notes.
  • Interviews:  personally asking people questions in one-on-one conversations.
  • Focus groups: asking questions and generating discussion among a group of people.
  • Surveys : distributing questionnaires with open-ended questions.
  • Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
  • You take field notes with observations and reflect on your own experiences of the company culture.
  • You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
  • You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves “instruments” in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analyzing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

  • Prepare and organize your data. This may mean transcribing interviews or typing up fieldnotes.
  • Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
  • Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorize your data.
  • Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
  • Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analyzing qualitative data. Although these methods share similar processes, they emphasize different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

  • Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

  • Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

  • Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

  • Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

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Researchers must consider practical and theoretical limitations in analyzing and interpreting their data. Qualitative research suffers from:

  • Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

  • Subjectivity

Due to the researcher’s primary role in analyzing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

  • Limited generalizability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalizable conclusions because the data may be biased and unrepresentative of the wider population .

  • Labor-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

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

  • Chi square goodness of fit test
  • Degrees of freedom
  • Null hypothesis
  • Discourse analysis
  • Control groups
  • Mixed methods research
  • Non-probability sampling
  • Quantitative research
  • Inclusion and exclusion criteria

Research bias

  • Rosenthal effect
  • Implicit bias
  • Cognitive bias
  • Selection bias
  • Negativity bias
  • Status quo bias

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to systematically measure variables and test hypotheses . Qualitative methods allow you to explore concepts and experiences in more detail.

There are five common approaches to qualitative research :

  • Grounded theory involves collecting data in order to develop new theories.
  • Ethnography involves immersing yourself in a group or organization to understand its culture.
  • Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
  • Phenomenological research involves investigating phenomena through people’s lived experiences.
  • Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organizations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

  • Prepare and organize your data.
  • Review and explore your data.
  • Develop a data coding system.
  • Assign codes to the data.
  • Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

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Research Method

Home » Qualitative Research – Methods, Analysis Types and Guide

Qualitative Research – Methods, Analysis Types and Guide

Table of Contents

Qualitative Research

Qualitative Research

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

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

Qualitative Research Methods

Types of Qualitative Research

Qualitative Research Methods are as follows:

One-to-One Interview

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

Focus Groups

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

Ethnographic Studies

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

Text Analysis

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

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

Process of Observation

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

Record Keeping

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

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

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

Qualitative Research Analysis Methods

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

Thematic Analysis

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

Content Analysis

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

Discourse Analysis

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

Grounded Theory Analysis

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

Narrative Analysis

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

Phenomenological Analysis

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

Comparative Analysis

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

Applications of Qualitative Research

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

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

How to Conduct Qualitative Research

Here are some general steps for conducting qualitative research:

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

Examples of Qualitative Research

Here are some real-time examples of qualitative research:

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

Purpose of Qualitative Research

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

Qualitative research can serve multiple purposes, including:

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

When to use Qualitative Research

Here are some situations where qualitative research may be appropriate:

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

Characteristics of Qualitative Research

Qualitative research is characterized by several key features, including:

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

Advantages of Qualitative Research

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

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

Limitations of Qualitative Research

Qualitative research also has some limitations, including:

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

Also see Research Methods

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Library Help

What is qualitative research.

Qualitative research methodologies seek to capture information that often can't be expressed numerically. These methodologies often include some level of interpretation from researchers as they collect information via observation, coded survey or interview responses, and so on. Researchers may use multiple qualitative methods in one study, as well as a theoretical or critical framework to help them interpret their data.

Qualitative research methods can be used to study:

  • How are political and social attitudes formed? 
  • How do people make decisions?
  • What teaching or training methods are most effective?  

Qualitative Research Approaches

Action research.

In this type of study, researchers will actively pursue some kind of intervention, resolve a problem, or affect some kind of change. They will not only analyze the results but will also examine the challenges encountered through the process. 

Ethnography

Ethnographies are an in-depth, holistic type of research used to capture cultural practices, beliefs, traditions, and so on. Here, the researcher observes and interviews members of a culture — an ethnic group, a clique, members of a religion, etc. — and then analyzes their findings. 

Grounded Theory

Researchers will create and test a hypothesis using qualitative data. Often, researchers use grounded theory to understand decision-making, problem-solving, and other types of behavior.

Narrative Research

Researchers use this type of framework to understand different aspects of the human experience and how their subjects assign meaning to their experiences. Researchers use interviews to collect data from a small group of subjects, then discuss those results in the form of a narrative or story.

Phenomenology

This type of research attempts to understand the lived experiences of a group and/or how members of that group find meaning in their experiences. Researchers use interviews, observation, and other qualitative methods to collect data. 

Often used to share novel or unique information, case studies consist of a detailed, in-depth description of a single subject, pilot project, specific events, and so on. 

  • Hossain, M.S., Runa, F., & Al Mosabbir, A. (2021). Impact of COVID-19 pandemic on rare diseases: A case study on thalassaemia patients in Bangladesh. Public Health in Practice, 2(100150), 1-3.
  • Nožina, M. (2021). The Czech Rhino connection: A case study of Vietnamese wildlife trafficking networks’ operations across central Europe. European Journal on Criminal Policy and Research, 27(2), 265-283.

Focus Groups

Researchers will recruit people to answer questions in small group settings. Focus group members may share similar demographics or be diverse, depending on the researchers' needs. Group members will then be asked a series of questions and have their responses recorded. While these responses may be coded and discussed numerically (e.g., 50% of group members responded negatively to a question), researchers will also use responses to provide context, nuance, and other details. 

  • Dichabeng, P., Merat, N., & Markkula, G. (2021). Factors that influence the acceptance of future shared automated vehicles – A focus group study with United Kingdom drivers. Transportation Research: Part F, 82, 121–140.
  • Maynard, E., Barton, S., Rivett, K., Maynard, O., & Davies, W. (2021). Because ‘grown-ups don’t always get it right’: Allyship with children in research—From research question to authorship. Qualitative Research in Psychology, 18(4), 518–536.

Observational Study

Researchers will arrange to observe (usually in an unobtrusive way) a set of subjects in specific conditions. For example, researchers might visit a school cafeteria to learn about the food choices students make or set up trail cameras to collect information about animal behavior in the area. 

  • He, J. Y., Chan, P. W., Li, Q. S., Li, L., Zhang, L., & Yang, H. L. (2022). Observations of wind and turbulence structures of Super Typhoons Hato and Mangkhut over land from a 356 m high meteorological tower. Atmospheric Research, 265(105910), 1-18.
  • Zerovnik Spela, Kos Mitja, & Locatelli Igor. (2022). Initiation of insulin therapy in patients with type 2 diabetes: An observational study. Acta Pharmaceutica, 72(1), 147–157.

Open-Ended Surveys

Unlike quantitative surveys, open-ended surveys require respondents to answer the questions in their own words. 

  • Mujcic, A., Blankers, M., Yildirim, D., Boon, B., & Engels, R. (2021). Cancer survivors’ views on digital support for smoking cessation and alcohol moderation: a survey and qualitative study. BMC Public Health, 21(1), 1-13.
  • Smith, S. D., Hall, J. P., & Kurth, N. K. (2021). Perspectives on health policy from people with disabilities. Journal of Disability Policy Studies, 32(3), 224–232.

Structured or Semi-Structured Interviews

Researchers will recruit a small number of people who fit pre-determined criteria (e.g., people in a certain profession) and ask each the same set of questions, one-on-one. Semi-structured interviews will include opportunities for the interviewee to provide additional information they weren't asked about by the researcher.

  • Gibbs, D., Haven-Tang, C., & Ritchie, C. (2021). Harmless flirtations or co-creation? Exploring flirtatious encounters in hospitable experiences. Tourism & Hospitality Research, 21(4), 473–486.
  • Hongying Dai, Ramos, A., Tamrakar, N., Cheney, M., Samson, K., & Grimm, B. (2021). School personnel’s responses to school-based vaping prevention program: A qualitative study. Health Behavior & Policy Review, 8(2), 130–147.
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Research methods--quantitative, qualitative, and more: overview.

  • Quantitative Research
  • Qualitative Research
  • Data Science Methods (Machine Learning, AI, Big Data)
  • Text Mining and Computational Text Analysis
  • Evidence Synthesis/Systematic Reviews
  • Get Data, Get Help!

About Research Methods

This guide provides an overview of research methods, how to choose and use them, and supports and resources at UC Berkeley. 

As Patten and Newhart note in the book Understanding Research Methods , "Research methods are the building blocks of the scientific enterprise. They are the "how" for building systematic knowledge. The accumulation of knowledge through research is by its nature a collective endeavor. Each well-designed study provides evidence that may support, amend, refute, or deepen the understanding of existing knowledge...Decisions are important throughout the practice of research and are designed to help researchers collect evidence that includes the full spectrum of the phenomenon under study, to maintain logical rules, and to mitigate or account for possible sources of bias. In many ways, learning research methods is learning how to see and make these decisions."

The choice of methods varies by discipline, by the kind of phenomenon being studied and the data being used to study it, by the technology available, and more.  This guide is an introduction, but if you don't see what you need here, always contact your subject librarian, and/or take a look to see if there's a library research guide that will answer your question. 

Suggestions for changes and additions to this guide are welcome! 

START HERE: SAGE Research Methods

Without question, the most comprehensive resource available from the library is SAGE Research Methods.  HERE IS THE ONLINE GUIDE  to this one-stop shopping collection, and some helpful links are below:

  • SAGE Research Methods
  • Little Green Books  (Quantitative Methods)
  • Little Blue Books  (Qualitative Methods)
  • Dictionaries and Encyclopedias  
  • Case studies of real research projects
  • Sample datasets for hands-on practice
  • Streaming video--see methods come to life
  • Methodspace- -a community for researchers
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  • Sponsored Projects Sponsored projects works with researchers applying for major external grants.
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Qualitative Research : Definition

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

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types of qualitative research methodology

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Qualitative Research Methods: Types, Analysis + Examples

Qualitative Research

Qualitative research is based on the disciplines of social sciences like psychology, sociology, and anthropology. Therefore, the qualitative research methods allow for in-depth and further probing and questioning of respondents based on their responses. The interviewer/researcher also tries to understand their motivation and feelings. Understanding how your audience makes decisions can help derive conclusions in market research.

What is qualitative research?

Qualitative research is defined as a market research method that focuses on obtaining data through open-ended and conversational communication .

This method is about “what” people think and “why” they think so. For example, consider a convenience store looking to improve its patronage. A systematic observation concludes that more men are visiting this store. One good method to determine why women were not visiting the store is conducting an in-depth interview method with potential customers.

For example, after successfully interviewing female customers and visiting nearby stores and malls, the researchers selected participants through random sampling . As a result, it was discovered that the store didn’t have enough items for women.

So fewer women were visiting the store, which was understood only by personally interacting with them and understanding why they didn’t visit the store because there were more male products than female ones.

Gather research insights

Types of qualitative research methods with examples

Qualitative research methods are designed in a manner that helps reveal the behavior and perception of a target audience with reference to a particular topic. There are different types of qualitative research methods, such as in-depth interviews, focus groups, ethnographic research, content analysis, and case study research that are usually used.

The results of qualitative methods are more descriptive, and the inferences can be drawn quite easily from the obtained data .

Qualitative research methods originated in the social and behavioral research sciences. Today, our world is more complicated, and it is difficult to understand what people think and perceive. Online research methods make it easier to understand that as it is a more communicative and descriptive analysis .

The following are the qualitative research methods that are frequently used. Also, read about qualitative research examples :

Types of Qualitative Research

1. One-on-one interview

Conducting in-depth interviews is one of the most common qualitative research methods. It is a personal interview that is carried out with one respondent at a time. This is purely a conversational method and invites opportunities to get details in depth from the respondent.

One of the advantages of this method is that it provides a great opportunity to gather precise data about what people believe and their motivations . If the researcher is well experienced, asking the right questions can help him/her collect meaningful data. If they should need more information, the researchers should ask such follow-up questions that will help them collect more information.

These interviews can be performed face-to-face or on the phone and usually can last between half an hour to two hours or even more. When the in-depth interview is conducted face to face, it gives a better opportunity to read the respondents’ body language and match the responses.

2. Focus groups

A focus group is also a commonly used qualitative research method used in data collection. A focus group usually includes a limited number of respondents (6-10) from within your target market.

The main aim of the focus group is to find answers to the “why, ” “what,” and “how” questions. One advantage of focus groups is you don’t necessarily need to interact with the group in person. Nowadays, focus groups can be sent an online survey on various devices, and responses can be collected at the click of a button.

Focus groups are an expensive method as compared to other online qualitative research methods. Typically, they are used to explain complex processes. This method is very useful for market research on new products and testing new concepts.

3. Ethnographic research

Ethnographic research is the most in-depth observational research method that studies people in their naturally occurring environment.

This method requires the researchers to adapt to the target audiences’ environments, which could be anywhere from an organization to a city or any remote location. Here, geographical constraints can be an issue while collecting data.

This research design aims to understand the cultures, challenges, motivations, and settings that occur. Instead of relying on interviews and discussions, you experience the natural settings firsthand.

This type of research method can last from a few days to a few years, as it involves in-depth observation and collecting data on those grounds. It’s a challenging and time-consuming method and solely depends on the researcher’s expertise to analyze, observe, and infer the data.

4. Case study research

T he case study method has evolved over the past few years and developed into a valuable quality research method. As the name suggests, it is used for explaining an organization or an entity.

This type of research method is used within a number of areas like education, social sciences, and similar. This method may look difficult to operate; however , it is one of the simplest ways of conducting research as it involves a deep dive and thorough understanding of the data collection methods and inferring the data.

5. Record keeping

This method makes use of the already existing reliable documents and similar sources of information as the data source. This data can be used in new research. This is similar to going to a library. There, one can go over books and other reference material to collect relevant data that can likely be used in the research.

6. Process of observation

Qualitative Observation is a process of research that uses subjective methodologies to gather systematic information or data. Since the focus on qualitative observation is the research process of using subjective methodologies to gather information or data. Qualitative observation is primarily used to equate quality differences.

Qualitative observation deals with the 5 major sensory organs and their functioning – sight, smell, touch, taste, and hearing. This doesn’t involve measurements or numbers but instead characteristics.

Explore Insightfully Contextual Inquiry in Qualitative Research

Qualitative research: data collection and analysis

A. qualitative data collection.

Qualitative data collection allows collecting data that is non-numeric and helps us to explore how decisions are made and provide us with detailed insight. For reaching such conclusions the data that is collected should be holistic, rich, and nuanced and findings to emerge through careful analysis.

  • Whatever method a researcher chooses for collecting qualitative data, one aspect is very clear the process will generate a large amount of data. In addition to the variety of methods available, there are also different methods of collecting and recording the data.

For example, if the qualitative data is collected through a focus group or one-to-one discussion, there will be handwritten notes or video recorded tapes. If there are recording they should be transcribed and before the process of data analysis can begin.

  • As a rough guide, it can take a seasoned researcher 8-10 hours to transcribe the recordings of an interview, which can generate roughly 20-30 pages of dialogues. Many researchers also like to maintain separate folders to maintain the recording collected from the different focus group. This helps them compartmentalize the data collected.
  • In case there are running notes taken, which are also known as field notes, they are helpful in maintaining comments, environmental contexts, environmental analysis , nonverbal cues etc. These filed notes are helpful and can be compared while transcribing audio recorded data. Such notes are usually informal but should be secured in a similar manner as the video recordings or the audio tapes.

B. Qualitative data analysis

Qualitative data analysis such as notes, videos, audio recordings images, and text documents. One of the most used methods for qualitative data analysis is text analysis.

Text analysis is a  data analysis method that is distinctly different from all other qualitative research methods, where researchers analyze the social life of the participants in the research study and decode the words, actions, etc. 

There are images also that are used in this research study and the researchers analyze the context in which the images are used and draw inferences from them. In the last decade, text analysis through what is shared on social media platforms has gained supreme popularity.

Characteristics of qualitative research methods

Characteristics of qualitative research methods - Infographics| QuestionPro

  • Qualitative research methods usually collect data at the sight, where the participants are experiencing issues or research problems . These are real-time data and rarely bring the participants out of the geographic locations to collect information.
  • Qualitative researchers typically gather multiple forms of data, such as interviews, observations, and documents, rather than rely on a single data source .
  • This type of research method works towards solving complex issues by breaking down into meaningful inferences, that is easily readable and understood by all.
  • Since it’s a more communicative method, people can build their trust on the researcher and the information thus obtained is raw and unadulterated.

Qualitative research method case study

Let’s take the example of a bookstore owner who is looking for ways to improve their sales and customer outreach. An online community of members who were loyal patrons of the bookstore were interviewed and related questions were asked and the questions were answered by them.

At the end of the interview, it was realized that most of the books in the stores were suitable for adults and there were not enough options for children or teenagers.

By conducting this qualitative research the bookstore owner realized what the shortcomings were and what were the feelings of the readers. Through this research now the bookstore owner can now keep books for different age categories and can improve his sales and customer outreach.

Such qualitative research method examples can serve as the basis to indulge in further quantitative research , which provides remedies.

When to use qualitative research

Researchers make use of qualitative research techniques when they need to capture accurate, in-depth insights. It is very useful to capture “factual data”. Here are some examples of when to use qualitative research.

  • Developing a new product or generating an idea.
  • Studying your product/brand or service to strengthen your marketing strategy.
  • To understand your strengths and weaknesses.
  • Understanding purchase behavior.
  • To study the reactions of your audience to marketing campaigns and other communications.
  • Exploring market demographics, segments, and customer care groups.
  • Gathering perception data of a brand, company, or product.

LEARN ABOUT: Steps in Qualitative Research

Qualitative research methods vs quantitative research methods

The basic differences between qualitative research methods and quantitative research methods are simple and straightforward. They differ in:

  • Their analytical objectives
  • Types of questions asked
  • Types of data collection instruments
  • Forms of data they produce
  • Degree of flexibility

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Qualitative research: methods and examples

Last updated

13 April 2023

Reviewed by

Qualitative research involves gathering and evaluating non-numerical information to comprehend concepts, perspectives, and experiences. It’s also helpful for obtaining in-depth insights into a certain subject or generating new research ideas. 

As a result, qualitative research is practical if you want to try anything new or produce new ideas.

There are various ways you can conduct qualitative research. In this article, you'll learn more about qualitative research methodologies, including when you should use them.

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  • What is qualitative research?

Qualitative research is a broad term describing various research types that rely on asking open-ended questions. Qualitative research investigates “how” or “why” certain phenomena occur. It is about discovering the inherent nature of something.

The primary objective of qualitative research is to understand an individual's ideas, points of view, and feelings. In this way, collecting in-depth knowledge of a specific topic is possible. Knowing your audience's feelings about a particular subject is important for making reasonable research conclusions.

Unlike quantitative research , this approach does not involve collecting numerical, objective data for statistical analysis. Qualitative research is used extensively in education, sociology, health science, history, and anthropology.

  • Types of qualitative research methodology

Typically, qualitative research aims at uncovering the attitudes and behavior of the target audience concerning a specific topic. For example,  “How would you describe your experience as a new Dovetail user?”

Some of the methods for conducting qualitative analysis include:

Focus groups

Hosting a focus group is a popular qualitative research method. It involves obtaining qualitative data from a limited sample of participants. In a moderated version of a focus group, the moderator asks participants a series of predefined questions. They aim to interact and build a group discussion that reveals their preferences, candid thoughts, and experiences.

Unmoderated, online focus groups are increasingly popular because they eliminate the need to interact with people face to face.

Focus groups can be more cost-effective than 1:1 interviews or studying a group in a natural setting and reporting one’s observations.

Focus groups make it possible to gather multiple points of view quickly and efficiently, making them an excellent choice for testing new concepts or conducting market research on a new product.

However, there are some potential drawbacks to this method. It may be unsuitable for sensitive or controversial topics. Participants might be reluctant to disclose their true feelings or respond falsely to conform to what they believe is the socially acceptable answer (known as response bias).

Case study research

A case study is an in-depth evaluation of a specific person, incident, organization, or society. This type of qualitative research has evolved into a broadly applied research method in education, law, business, and the social sciences.

Even though case study research may appear challenging to implement, it is one of the most direct research methods. It requires detailed analysis, broad-ranging data collection methodologies, and a degree of existing knowledge about the subject area under investigation.

Historical model

The historical approach is a distinct research method that deeply examines previous events to better understand the present and forecast future occurrences of the same phenomena. Its primary goal is to evaluate the impacts of history on the present and hence discover comparable patterns in the present to predict future outcomes.

Oral history

This qualitative data collection method involves gathering verbal testimonials from individuals about their personal experiences. It is widely used in historical disciplines to offer counterpoints to established historical facts and narratives. The most common methods of gathering oral history are audio recordings, analysis of auto-biographical text, videos, and interviews.

Qualitative observation

One of the most fundamental, oldest research methods, qualitative observation , is the process through which a researcher collects data using their senses of sight, smell, hearing, etc. It is used to observe the properties of the subject being studied. For example, “What does it look like?” As research methods go, it is subjective and depends on researchers’ first-hand experiences to obtain information, so it is prone to bias. However, it is an excellent way to start a broad line of inquiry like, “What is going on here?”

Record keeping and review

Record keeping uses existing documents and relevant data sources that can be employed for future studies. It is equivalent to visiting the library and going through publications or any other reference material to gather important facts that will likely be used in the research.

Grounded theory approach

The grounded theory approach is a commonly used research method employed across a variety of different studies. It offers a unique way to gather, interpret, and analyze. With this approach, data is gathered and analyzed simultaneously.  Existing analysis frames and codes are disregarded, and data is analyzed inductively, with new codes and frames generated from the research.

Ethnographic research

Ethnography  is a descriptive form of a qualitative study of people and their cultures. Its primary goal is to study people's behavior in their natural environment. This method necessitates that the researcher adapts to their target audience's setting. 

Thereby, you will be able to understand their motivation, lifestyle, ambitions, traditions, and culture in situ. But, the researcher must be prepared to deal with geographical constraints while collecting data i.e., audiences can’t be studied in a laboratory or research facility.

This study can last from a couple of days to several years. Thus, it is time-consuming and complicated, requiring you to have both the time to gather the relevant data as well as the expertise in analyzing, observing, and interpreting data to draw meaningful conclusions.

Narrative framework

A narrative framework is a qualitative research approach that relies on people's written text or visual images. It entails people analyzing these events or narratives to determine certain topics or issues. With this approach, you can understand how people represent themselves and their experiences to a larger audience.

Phenomenological approach

The phenomenological study seeks to investigate the experiences of a particular phenomenon within a group of individuals or communities. It analyzes a certain event through interviews with persons who have witnessed it to determine the connections between their views. Even though this method relies heavily on interviews, other data sources (recorded notes), and observations could be employed to enhance the findings.

  • Qualitative research methods (tools)

Some of the instruments involved in qualitative research include:

Document research: Also known as document analysis because it involves evaluating written documents. These can include personal and non-personal materials like archives, policy publications, yearly reports, diaries, or letters.

Focus groups:  This is where a researcher poses questions and generates conversation among a group of people. The major goal of focus groups is to examine participants' experiences and knowledge, including research into how and why individuals act in various ways.

Secondary study: Involves acquiring existing information from texts, images, audio, or video recordings.

Observations:   This requires thorough field notes on everything you see, hear, or experience. Compared to reported conduct or opinion, this study method can assist you in getting insights into a specific situation and observable behaviors.

Structured interviews :  In this approach, you will directly engage people one-on-one. Interviews are ideal for learning about a person's subjective beliefs, motivations, and encounters.

Surveys:  This is when you distribute questionnaires containing open-ended questions

  • What are common examples of qualitative research?

Everyday examples of qualitative research include:

Conducting a demographic analysis of a business

For instance, suppose you own a business such as a grocery store (or any store) and believe it caters to a broad customer base, but after conducting a demographic analysis, you discover that most of your customers are men.

You could do 1:1 interviews with female customers to learn why they don't shop at your store.

In this case, interviewing potential female customers should clarify why they don't find your shop appealing. It could be because of the products you sell or a need for greater brand awareness, among other possible reasons.

Launching or testing a new product

Suppose you are the product manager at a SaaS company looking to introduce a new product. Focus groups can be an excellent way to determine whether your product is marketable.

In this instance, you could hold a focus group with a sample group drawn from your intended audience. The group will explore the product based on its new features while you ensure adequate data on how users react to the new features. The data you collect will be key to making sales and marketing decisions.

Conducting studies to explain buyers' behaviors

You can also use qualitative research to understand existing buyer behavior better. Marketers analyze historical information linked to their businesses and industries to see when purchasers buy more.

Qualitative research can help you determine when to target new clients and peak seasons to boost sales by investigating the reason behind these behaviors.

  • Qualitative research: data collection

Data collection is gathering information on predetermined variables to gain appropriate answers, test hypotheses, and analyze results. Researchers will collect non-numerical data for qualitative data collection to obtain detailed explanations and draw conclusions.

To get valid findings and achieve a conclusion in qualitative research, researchers must collect comprehensive and multifaceted data.

Qualitative data is usually gathered through interviews or focus groups with videotapes or handwritten notes. If there are recordings, they are transcribed before the data analysis process. Researchers keep separate folders for the recordings acquired from each focus group when collecting qualitative research data to categorize the data.

  • Qualitative research: data analysis

Qualitative data analysis is organizing, examining, and interpreting qualitative data. Its main objective is identifying trends and patterns, responding to research questions, and recommending actions based on the findings. Textual analysis is a popular method for analyzing qualitative data.

Textual analysis differs from other qualitative research approaches in that researchers consider the social circumstances of study participants to decode their words, behaviors, and broader meaning. 

types of qualitative research methodology

Learn more about qualitative research data analysis software

  • When to use qualitative research

Qualitative research is helpful in various situations, particularly when a researcher wants to capture accurate, in-depth insights. 

Here are some instances when qualitative research can be valuable:

Examining your product or service to improve your marketing approach

When researching market segments, demographics, and customer service teams

Identifying client language when you want to design a quantitative survey

When attempting to comprehend your or someone else's strengths and weaknesses

Assessing feelings and beliefs about societal and public policy matters

Collecting information about a business or product's perception

Analyzing your target audience's reactions to marketing efforts

When launching a new product or coming up with a new idea

When seeking to evaluate buyers' purchasing patterns

  • Qualitative research methods vs. quantitative research methods

Qualitative research examines people's ideas and what influences their perception, whereas quantitative research draws conclusions based on numbers and measurements.

Qualitative research is descriptive, and its primary goal is to comprehensively understand people's attitudes, behaviors, and ideas.

In contrast, quantitative research is more restrictive because it relies on numerical data and analyzes statistical data to make decisions. This research method assists researchers in gaining an initial grasp of the subject, which deals with numbers. For instance, the number of customers likely to purchase your products or use your services.

What is the most important feature of qualitative research?

A distinguishing feature of qualitative research is that it’s conducted in a real-world setting instead of a simulated environment. The researcher is examining actual phenomena instead of experimenting with different variables to see what outcomes (data) might result.

Can I use qualitative and quantitative approaches together in a study?

Yes, combining qualitative and quantitative research approaches happens all the time and is known as mixed methods research. For example, you could study individuals’ perceived risk in a certain scenario, such as how people rate the safety or riskiness of a given neighborhood. Simultaneously, you could analyze historical data objectively, indicating how safe or dangerous that area has been in the last year. To get the most out of mixed-method research, it’s important to understand the pros and cons of each methodology, so you can create a thoughtfully designed study that will yield compelling results.

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How to Write a Research Methodology for a Research Paper

Are you overwhelmed by the multitude of qualitative research methods available? It's no secret that choosing the right approach can leave you stuck at the starting line of your research.

Selecting an unsuitable method can lead to wasted time, resources, and potentially skewed results. But with so many options to consider, it's easy to feel lost in the complexities of qualitative research.

In this comprehensive guide, we will explain the types of qualitative research, their unique characteristics, advantages, and best use cases for each method.

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  • 1. What is Qualitative Research?
  • 2. Types of Qualitative Research Methods
  • 3. Types of Data Analysis in Qualitative Research 

What is Qualitative Research?

Qualitative research is a robust and flexible methodology used to explore and understand complex phenomena in-depth. 

Unlike quantitative research , qualitative research dives into the rich and complex aspects of human experiences, behaviors, and perceptions.

At its core, this type of research question seek to answer for:

  • Why do people think or behave a certain way?
  • What are the underlying motivations and meanings behind actions?
  • How do individuals perceive and interpret the world around them?

This approach values context, diversity, and the unique perspectives of participants. 

Rather than seeking generalizable findings applicable to a broad population, qualitative research aims for detailed insights, patterns, and themes that come from the people being studied.

Characteristics of Qualitative Research 

Qualitative research possesses the following characteristics: 

  • Subjective Perspective: Qualitative research explores subjective experiences, emphasizing the uniqueness of human behavior and opinions.
  • In-Depth Exploration: It involves deep investigation, allowing a comprehensive understanding of specific phenomena.
  • Open-Ended Questions: Qualitative research uses open-ended questions to encourage detailed, descriptive responses.
  • Contextual Understanding: It emphasizes the importance of understanding the research context and setting.
  • Rich Descriptions: Qualitative research produces rich, descriptive findings that contribute to a nuanced understanding of the topic.

Types of Qualitative Research Methods

Researchers collect data on the targeted population, place, or event by using different types of qualitative research analysis.

Each qualitative research method offers a distinct perspective, enabling researchers to reveal concealed meanings, patterns, and valuable insights.

Below are the most commonly used qualitative research types for writing a paper.

Ethnographic Research Method 

Ethnography, a subfield of anthropology, provides a scientific approach to examining human societies and cultures. It ranks among the most widely employed qualitative research techniques.

In ethnographic field notes, researchers actively engage with the environment and live alongside the focus group. 

This immersive interaction allows researchers to gain insights into the objectives, motivations, challenges, and distinctive cultural attributes of the individuals under study.

Key cultural characteristics that ethnography helps to illustrate encompass:

  • Geographical Location
  • Religious Practices
  • Tribal Systems
  • Shared Experiences

Unlike traditional survey and interview-based research methods, ethnographers don't rely on structured questioning. 

Instead, they become observers within the community, emphasizing participant observation over an extended period. However, it may also be appropriate to complement observations with interviews of individuals who possess knowledge of the culture.

Ethnographic research can present challenges if the researcher is unfamiliar with the social norms and language of the group being studied. 

Furthermore, interpretations made by outsiders may lead to misinterpretations or confusion. Therefore, thorough validation of data is essential before presenting findings.

Narrative Method 

The narrative research design unfolds over an extended period to compile data, much like crafting a cohesive story. Similar to a narrative structure, it begins with a starting point and progresses through various life situations.

In this method, researchers engage in in-depth interviews and review relevant documents. They explore events that have had a significant impact on an individual's personality and life journey. Interviews may occur over weeks, months, or even years, depending on the depth and scope of the narrative being studied.

The outcome of narrative research is the presentation of a concise story that captures essential themes, conflicts, and challenges. It provides a holistic view of the individual's experiences, both positive and negative, which have shaped their unique narrative.

Phenomenological Method 

The term "phenomenological" pertains to the study of phenomena, which can encompass events, situations, or experiences. 

This method is ideal for examining a subject from multiple perspectives and contributing to existing knowledge, with a particular focus on subjective experiences.

Researchers employing the phenomenological method use various data collection techniques, including interviews, site visits, observations, surveys, and document reviews. 

These methods help gather rich and diverse data about the phenomenon under investigation.

A central aspect of this technique is capturing how participants experience events or activities, delving into their subjective viewpoints. Ultimately, the research results in the creation of a thematic database that validates the findings and offers insights from the subject's perspective.

Grounded Theory Method

A grounded theory approach differs from a phenomenological study in that it seeks to explain, provide reasons for, or develop theories behind an event or phenomenon. 

It serves as a means to construct new theories by systematically collecting and analyzing data related to a specific phenomenon.

Researchers employing the grounded theory method utilize a variety of data collection techniques, including observation, interviews, literature review , and the analysis of relevant documents. 

The focus of content analysis is not individual behaviors but a specific phenomenon or incident.

This method typically involves various coding techniques and large sample sizes to identify themes and develop more comprehensive theories.

Case Study Research 

The case study approach entails a comprehensive examination of a subject over an extended period, with a focus on providing detailed insights into the subject, which can be an event, person, business, or place.

Data for case studies is collected from diverse sources, including interviews, direct observation, historical records, and documentation.

Case studies find applications across various disciplines, including law, education, medicine, and the sciences. They can serve both descriptive and explanatory purposes, making them a versatile research methodology .

Researchers often turn to the case study method when they want to explore:

  • 'How' and 'why' research questions
  • Behaviors under observation
  • Understanding a specific phenomenon
  • The contextual factors influencing the phenomena

Historical Method

The historical method aims to describe and analyze past events, offering insights into present patterns and the potential to predict future scenarios. 

Researchers formulate research questions based on a hypothetical idea and then rigorously test this idea using multiple historical resources.

Key steps in the historical method include:

  • Developing a research idea
  • Identifying appropriate sources such as archives and libraries
  • Ensuring the reliability and validity of these sources
  • Creating a well-organized research outline
  • Systematically collecting research data

The analysis phase involves critically assessing the collected data, accepting or rejecting it based on credibility, and identifying any conflicting evidence.

Ultimately, the outcomes of the historical method are presented in the form of a biography or a scholarly paper that provides a comprehensive account of the research findings.

Action Research 

Action research is a dynamic research approach focused on addressing practical challenges in real-world settings while simultaneously conducting research to improve the situation. 

It follows a cyclic process, starting with the identification of a specific issue or problem in a particular context.

The key steps in action research include:

  • Planning and implementing actions to address the issue
  • Collecting data during the action phase to understand its impact
  • Reflecting on the data and analyzing it to gain insights
  • Adjusting the action plan based on the analysis

This process may be iterative, with multiple cycles of action and reflection.

The outcomes of action research are practical solutions and improved practices that directly benefit the context in which the research is conducted. Additionally, it leads to a deeper and more nuanced understanding of the issue under investigation.

Focus Groups 

Focus groups are a qualitative research method used to gather in-depth insights and perspectives on a specific topic or research question. 

This approach involves assembling a small group of participants who possess relevant knowledge or experiences related to the research focus.

Key steps in the focus group method include:

  • Selecting participants
  • Moderating the discussion
  • Structuring the conversation around open-ended questions
  • Collecting data through audio or video recordings and note-taking 

The discussion is dynamic and interactive, encouraging participants to share their thoughts, experiences, and opinions.

The analysis phase involves reviewing the data collected from the focus group discussion to identify common themes, patterns, and valuable insights. Focus groups provide rich qualitative data that offer a deeper and more nuanced understanding of the research topic or question.

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Types of Data Analysis in Qualitative Research 

Qualitative research employs different data analysis methods, each suited to specific research goals:

  • Thematic Analysis: Identifies recurring themes or concepts within data.
  • Content Analysis: Systematically categorizes and quantifies text or media content.
  • Narrative Analysis: Focuses on storytelling and narrative elements in data.
  • Grounded Theory Analysis: Develops or refines theories based on data.
  • Discourse Analysis: Examines language and communication patterns.
  • Framework Analysis: Organizes data using predefined categories.
  • Visual Analysis: Interprets visual data like photos or videos.
  • Cross-case Analysis: Compares patterns across multiple cases.

The choice depends on research questions and data type, enhancing understanding and insights.

Benefits of Qualitative Research 

Qualitative research offers valuable advantages, including:

  • Flexibility: Adaptable to various research questions and settings.
  • Holistic Approach: Explores multiple dimensions of phenomena.
  • Theory Development: Contributes to theory creation or refinement.
  • Participant Engagement: Fosters active participant involvement.
  • Complements Quantitative Research: Provides a comprehensive understanding.

All in all, different types of qualitative research methodology can assist in understanding the behavior and motivations of people. Similarly, it will also help in generating original ideas and formulating a better research problem.

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  • What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on 4 April 2022 by Pritha Bhandari . Revised on 30 January 2023.

Qualitative research involves collecting and analysing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analysing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, and history.

  • How does social media shape body image in teenagers?
  • How do children and adults interpret healthy eating in the UK?
  • What factors influence employee retention in a large organisation?
  • How is anxiety experienced around the world?
  • How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography, action research, phenomenological research, and narrative research. They share some similarities, but emphasise different aims and perspectives.

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Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

  • Observations: recording what you have seen, heard, or encountered in detailed field notes.
  • Interviews:  personally asking people questions in one-on-one conversations.
  • Focus groups: asking questions and generating discussion among a group of people.
  • Surveys : distributing questionnaires with open-ended questions.
  • Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
  • You take field notes with observations and reflect on your own experiences of the company culture.
  • You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
  • You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves ‘instruments’ in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analysing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

  • Prepare and organise your data. This may mean transcribing interviews or typing up fieldnotes.
  • Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
  • Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorise your data.
  • Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
  • Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analysing qualitative data. Although these methods share similar processes, they emphasise different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

  • Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

  • Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

  • Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

  • Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

Researchers must consider practical and theoretical limitations in analysing and interpreting their data. Qualitative research suffers from:

  • Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

  • Subjectivity

Due to the researcher’s primary role in analysing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

  • Limited generalisability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalisable conclusions because the data may be biased and unrepresentative of the wider population .

  • Labour-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to test a hypothesis by systematically collecting and analysing data, while qualitative methods allow you to explore ideas and experiences in depth.

There are five common approaches to qualitative research :

  • Grounded theory involves collecting data in order to develop new theories.
  • Ethnography involves immersing yourself in a group or organisation to understand its culture.
  • Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
  • Phenomenological research involves investigating phenomena through people’s lived experiences.
  • Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organisations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

  • Prepare and organise your data.
  • Review and explore your data.
  • Develop a data coding system.
  • Assign codes to the data.
  • Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

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Pritha Bhandari

Pritha Bhandari

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  • Published: 27 May 2020

How to use and assess qualitative research methods

  • Loraine Busetto   ORCID: orcid.org/0000-0002-9228-7875 1 ,
  • Wolfgang Wick 1 , 2 &
  • Christoph Gumbinger 1  

Neurological Research and Practice volume  2 , Article number:  14 ( 2020 ) Cite this article

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This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 , 8 , 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 , 10 , 11 , 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

figure 1

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

figure 2

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

figure 3

From data collection to data analysis

Attributions for icons: see Fig. 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 , 25 , 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

figure 4

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 , 32 , 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 , 38 , 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

Availability of data and materials

Not applicable.

Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

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Busetto, L., Wick, W. & Gumbinger, C. How to use and assess qualitative research methods. Neurol. Res. Pract. 2 , 14 (2020). https://doi.org/10.1186/s42466-020-00059-z

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4.3 Qualitative Research Methodologies

Phenomenology is a research approach that seeks to understand the essence of a particular phenomenon through a detailed exploration of individual experiences. It is especially beneficial for exploring personal experiences such as emotions, perceptions, and awareness. As a budding qualitative researcher, it is imperative that you understand the different qualitative methods to enable you to choose the appropriate methods for your research question. In this chapter, we aim to discuss the most common qualitative methodologies which include descriptive, phenomenology, narrative inquiry, case study, ethnography, action research and grounded theory (Figure 4.2).

types of qualitative research methodology

Descriptive:  A descriptive qualitative study attempts to systematically describe a situation, problem, phenomenon, service or programme. It focuses on discovering the who, what, and where of events or experiences and gaining insights from informants regarding a poorly understood phenomenon. 12 It is also used when more information is required to aid the development and refinement of questionnaires in research projects aiming to gain firsthand knowledge of patients’, relatives’ or professionals’ experiences with a particular topic. 13 This is a good choice for beginner qualitative researchers doing exploratory studies. It uses purposive or convenience sampling, with in-depth interviews as the most common data collection method. 14 Data analysis for this type of qualitative research focuses on a rich descriptive summary of the characteristics (themes) of the phenomena with some interpretation. 14 An example is the study by Cao et al. 2022 that explored the state of education regarding end-of-life care from the perspectives of undergraduate nurses. The findings showed that the undergraduate curriculum related to end-of-life care was disjointed and cultural attitudes toward disease and death impede the undergraduate nurses’ learning and knowledge translation of end-of-life care. 15

Phenomenology is also commonly used in qualitative research, and it is a research approach that seeks to understand the essence of a particular phenomenon through a detailed exploration of individual experiences. It is especially beneficial for exploring personal experiences such as emotions, perceptions, and awareness.that is especially beneficial for exploring personal experiences such as emotions, perceptions, and awareness. 16 It involves in-depth conversations on a specific topic, captures the relationships between people, things, events and situations and describes and explains phenomena from the perspective of those who have experienced it. 17 It explores the dimensions of participants’ experiences. 18 It seeks to understand problems, ideas, and situations in terms of shared understandings and experiences rather than differences. 19 Phenomenological research often employs in-depth, unstructured or semi-structured interviews as a means of data collection. 20 Data analysis typically involves identifying the essential structure or meaning of the experience being studied and then describing it in a way that is understandable to others. The researcher uses a process called the transcendental-phenomenological reduction to bracket off or set aside any preconceived notions of the phenomenon being studied. 21 In this method, researchers use theme analysis to focus on the attributed meaning of participants’ lived experiences rather than influencing findings with their own beliefs. 21 This process allows the researcher to gain a deeper understanding of the phenomenon’s essence as it is lived and experienced by participants. 21 For example, Liao et al. 2021 conducted a study exploring what medical learners experience through narrative medicine and the meanings they ascribe to narrative-based learning. The study identified six themes: feeling hesitation, seeking guidance, shifting roles in narratives, questioning relationships, experiencing transformation, and requesting a safe learning environment. 22

Narrative inquiry: Narrative inquiry is qualitative research that seeks to understand how individuals make meaning of their lives and the world around them through studying their stories and experiences. 23 This qualitative research focuses on marginalised populations, usually individuals or small groups and aims to give voice to their perspective. 24 This approach helps people learn more about the participants’ culture, historical experiences, identity, and lifestyle and is often recorded as a biography, life history, artifacts or traditional story. 25 It captures a wealth of story data, including emotions, beliefs, images, and insights about time. It also considers the relationship between personal experience and the wider social and cultural context. 24 Importantly, it also involves joint investigation and joint meaning-building between participants and researchers. 26 A major benefit of narrative inquiry is that it involves storytelling, and because humans are natural storytellers, the approach makes it easy to elicit stories. 24 Additionally, it facilitates the creation and construction of data through narratives of lived experience and fosters meaning formation, thus providing valuable insight into the complexities of human life, culture, and behavior. 11 This makes it possible to gather in-depth meaning as participants usually reveal themselves in their stories. 27 Narrative inquiry entails collecting data in the form of stories or narratives through interviews, written or visual materials, or other kinds of self-expression. 24 Data analysis in narrative inquiry involves identifying the themes, patterns, and meaning of the stories under consideration and understanding how the stories are formed and related to the individual’s experiences and perspective. 24 An example is the study by Gordon et al. 2015 which explored medical trainees’ experiences of leadership and followership in the interprofessional healthcare workplace. 28 The findings showed that participants most often narrated experiences from the position of follower. 28 Their narratives illustrated many factors that facilitate or inhibit the development of leadership identities. 28 Traditional medical and interprofessional hierarchies persist within the healthcare workplace, and wider healthcare systems can act as barriers to distributed leadership practices. 28

Case Study aids holistic exploration of a phenomenon. It provides powerful stories within social contexts through various data sources. It undertakes the exploration through various lenses to capture continuity and change and reveal multiple facets of the phenomenon. 29 It is an explanatory, descriptive or exploratory analysis of a single case example of a phenomenon. Case study aids researchers in giving a holistic, detailed account of a single case (or more) as it occurs in its real-life context. 30 The purpose of a case study is to understand complex phenomena and to explore new research questions in a real-world setting. 29 There are three main types of qualitative case study design: intrinsic case study, instrumental case study and collective case study. 31 An intrinsic case study is often conducted to learn about a one-of-a-kind phenomenon. 31 This type of case study focuses on a single case or a small number of cases and explores a specific phenomenon or issue in depth. 30,31 The researcher needs to define the phenomenon’s distinctiveness, which separates it from all others. In contrast, the instrumental case study employs a specific instance (some of which may be superior to others) to acquire a more extensive understanding of an issue or phenomenon. 30,31 An instrumental case study uses a single case or a small number of cases to explore a broader research question or problem. 31 The collective case study researches numerous instances concurrently or sequentially to obtain a more comprehensive understanding of a specific subject. 30,31 This type of case study analyses multiple cases to understand a phenomenon or issue from different perspectives. 31 The data collection techniques used in a case study include interviews, observations, or written or visual materials. Data can be collected from various sources, including the case, documents or records, and other relevant individuals. In a case study, data analysis is often inductive, which means that the researcher begins with the data and generates themes, patterns, or insights from it. To examine the data, the researcher may employ a range of approaches, such as coding, memoing, or content analysis. An example of a case study is the study by Lemmen et al. 2021 , which aimed to provide insight into how adopting positive health (PH) in a general practice affects primary care professionals’ (PCP) job satisfaction. 32 The findings of the study identified three themes regarding PCPs’ adoption of PH and job satisfaction, namely adopting and adapting Positive Health, giving substance to Positive Health in practice, and changing financial and organisational structures. 32 Thus, the PCPs adopted PH, which supported PCPs to express, legitimise, and promote their distinctive approach to care work and its value. 32 PH also enabled PCPs to change their financial and organisational structures, freeing time to spend on patients and their own well-being. The changes made by the practice increased the job satisfaction of the PCPs. 32

Ethnography is the study of culture and entails the observation of details of everyday life as they naturally unfold in the real world. It is commonly used in anthropological research focusing on the community 33 . It generally involves researchers directly observing a participant’s natural environment over time. 33 A key feature of ethnography is the fact that natural settings, unadapted for the researchers’ interests, are used. In ethnography, the natural setting or environment is as important as the participants, and such methods have the advantage of explicitly acknowledging that, in the real world, environmental constraints and context influence behaviours and outcomes. 34 Ethnography focuses on the lived culture of a group of people, that is, the knowledge they use to generate and interpret social behaviour. 35 Ethnography often involves a small number of cases or a community, ethnic or social groups. The researcher enters the lived experience of participants in the field and spends considerable time with them to understand their way of life. This research approach increases the strength of the data. 35 An example of ethnographic research is the study by Hinder and Greenhalgh, 2012 . The study sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some. The study revealed that self-management involved both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives’ input, negotiating access to services or resources). 36 Self-management was hard work and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. 36 Although this study is old, it provides insight into some of the challenges associated with diabetes. 36 While more devices have helped with diabetes in recent years, some of these challenges may still exist.

Action Research involves a cyclical process of planning, action, observation, and reflection to improve practice or address a problem. It attempts to understand and improve the world via change. 37 The goal of action research is to generate new knowledge and understanding about a specific issue while at the same time taking action to improve the situation. 37 Action research is guided by the desire to take action, so it is not a design. A type of action research is participatory action research. 38 At its core, this is a collaborative, self-reflective enquiry undertaken by researchers and participants to understand and improve upon the practices in which they participate and the situations in which they find themselves. 38 The goal is for the participant to be an equal partner with the researcher. 39 The reflective process is inextricably tied to action, impacted by knowledge of history, culture, and the local context, and is rooted in social connections. 38 It is an inquiry process used to understand and improve complex social systems, such as organisations, communities, or classrooms. 40 Participatory action research draws on qualitative methods such as interviews and observation to inquire about ways to improve the quality of practice. 41 The study by Doherty and O’Brien, 2021 explored midwives’ understandings of burnout, professionally and personally, in the context of contemporary maternity care in Ireland. 42 Multiple factors influenced midwives’ views and understandings of burnout. PAR provided a platform for midwives to examine their ideas and views on burnout with the collaborative support of their midwifery colleagues, via cycles of action and reflection, which is necessary to develop and maintain change. Midwives characterised burnout as continuous stress and tiredness, with an accompanying decline in their coping capacities, motivation, empathy, and/or efficacy. Burnout is unique to the person and is primarily induced and irrevocably tied to excessive workload in midwifery. 42

Grounded theory first described by Glaser and Strauss in 1967, is a framework for qualitative research that suggests that theory must derive from data, unlike other forms of research, which suggest that data should be used to test theory. 43 It is a qualitative research process that entails developing theories based on evidence that has been collected from the participants. 43 Grounded theory may be particularly valuable when little or nothing is known or understood about a problem, situation, or context. 44 The main purpose is to develop a theory that explains patterns and correlations in data and may be utilised to understand and predict the phenomenon under investigation. This method often entails gathering data through interviews, focus groups, questionnaires, surveys, transcripts, letters, government reports, papers, grey literature, music, artefacts, videos, blogs and memos, then analysing it to identify patterns and relationships. 45 Data is analysed via inductive analysis; the researcher starts with observations and data and then builds hypotheses and insights based on the data. In addition, a continual comparison technique is employed, which entails comparing data repeatedly to identify patterns and themes. 46 Furthermore, open, axial and selective coding is used. Open coding divides data into smaller chunks and classifies them based on their qualities and relationships. 47 In axial coding, links between categories and their subcategories are examined with respect to data. 47 Through “selective coding,” all categories are brought together around a “core” category, and categories requiring further explanation include descriptive information. This type of coding is more likely to occur in the final stages of study. 47 An example is the study by Malau-Aduli et al., 2020 ; the study had two main aims – (1) to identify the factors that influence an International Medical Graduate’s (IMG) decision to remain working in regional, rural, and remote areas; (2) to develop a theory, grounded in the data, to explain how these factors are prioritised, evaluated and used to inform a decision to remain working in RRR areas. 48   The findings revealed that the IMG decision-making process involved a complex, dynamic, and iterative process of balancing life goals based on life stage. Many factors were considered when assessing the balance of three primary life goals: satisfaction with work, family, and lifestyle. Another example is the study by Akosah-Twumasi et al. 2020 which explored the perceived role of sub-Saharan African migrant parents living in Australia in the career decision-making processes of their adolescent children. 49 The study showed that the majority of SSA immigrant parents continued to parent in the same manner as they did back home. 49 Interestingly, some parents modified their parenting approaches due to their perceptions of the host nation. 49 However, due to their apparent lack of educational capacity to educate their children, other parents who would otherwise be authoritative turned into trustworthy figures. 49

An Introduction to Research Methods for Undergraduate Health Profession Students Copyright © 2023 by Faith Alele and Bunmi Malau-Aduli is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

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  • Research Process

Choosing the Right Research Methodology: A Guide for Researchers

  • 3 minute read
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Table of Contents

Choosing an optimal research methodology is crucial for the success of any research project. The methodology you select will determine the type of data you collect, how you collect it, and how you analyse it. Understanding the different types of research methods available along with their strengths and weaknesses, is thus imperative to make an informed decision.

Understanding different research methods:

There are several research methods available depending on the type of study you are conducting, i.e., whether it is laboratory-based, clinical, epidemiological, or survey based . Some common methodologies include qualitative research, quantitative research, experimental research, survey-based research, and action research. Each method can be opted for and modified, depending on the type of research hypotheses and objectives.

Qualitative vs quantitative research:

When deciding on a research methodology, one of the key factors to consider is whether your research will be qualitative or quantitative. Qualitative research is used to understand people’s experiences, concepts, thoughts, or behaviours . Quantitative research, on the contrary, deals with numbers, graphs, and charts, and is used to test or confirm hypotheses, assumptions, and theories. 

Qualitative research methodology:

Qualitative research is often used to examine issues that are not well understood, and to gather additional insights on these topics. Qualitative research methods include open-ended survey questions, observations of behaviours described through words, and reviews of literature that has explored similar theories and ideas. These methods are used to understand how language is used in real-world situations, identify common themes or overarching ideas, and describe and interpret various texts. Data analysis for qualitative research typically includes discourse analysis, thematic analysis, and textual analysis. 

Quantitative research methodology:

The goal of quantitative research is to test hypotheses, confirm assumptions and theories, and determine cause-and-effect relationships. Quantitative research methods include experiments, close-ended survey questions, and countable and numbered observations. Data analysis for quantitative research relies heavily on statistical methods.

Analysing qualitative vs quantitative data:

The methods used for data analysis also differ for qualitative and quantitative research. As mentioned earlier, quantitative data is generally analysed using statistical methods and does not leave much room for speculation. It is more structured and follows a predetermined plan. In quantitative research, the researcher starts with a hypothesis and uses statistical methods to test it. Contrarily, methods used for qualitative data analysis can identify patterns and themes within the data, rather than provide statistical measures of the data. It is an iterative process, where the researcher goes back and forth trying to gauge the larger implications of the data through different perspectives and revising the analysis if required.

When to use qualitative vs quantitative research:

The choice between qualitative and quantitative research will depend on the gap that the research project aims to address, and specific objectives of the study. If the goal is to establish facts about a subject or topic, quantitative research is an appropriate choice. However, if the goal is to understand people’s experiences or perspectives, qualitative research may be more suitable. 

Conclusion:

In conclusion, an understanding of the different research methods available, their applicability, advantages, and disadvantages is essential for making an informed decision on the best methodology for your project. If you need any additional guidance on which research methodology to opt for, you can head over to Elsevier Author Services (EAS). EAS experts will guide you throughout the process and help you choose the perfect methodology for your research goals.

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Exploring Types of Research Methods: A Comprehensive Guide

Harish M

Grasping the concept of research method is essential for anyone engaged in research or assessing the outcomes of studies. Whether you're an academic student, a dedicated researcher, or just inquisitive about the world, a thorough understanding of the diverse research methods will assist you in sifting through the extensive array of information at your disposal.

Our detailed guide will walk you through the types of research design, including qualitative and quantitative approaches, as well as descriptive, correlational, experimental, and mixed methods research. We will also touch upon the different types of research methodology, ensuring a comprehensive understanding of the various types of methods in research.

This article will also highlight the pivotal factors to consider when crafting a study and the inherent strengths and limitations of different type of research methods.Whether you're embarking on your own research project or looking to enhance your critical thinking skills Armed with the research methods definition, this guide will equip you with the essential knowledge to make well-informed decisions and formulate significant conclusions in the field of research.

Qualitative vs. Quantitative Research Methods

Qualitative and quantitative research methods represent two fundamentally different approaches to data collection and analysis. Qualitative observation delves into non-numerical data, while quantitative observation involves the scrutiny of data that is numerical and quantifiable.

Qualitative Research:

  • Involves gathering and interpreting non-numerical data, such as text, video, photographs, or audio recordings
  • Uses sources like interviews, focus groups, documents, personal accounts, cultural records, and observation
  • Unstructured or semi-structured format
  • Open-ended questions
  • Comprehensive perspective on individuals' experiences
  • Comparison of participants' feedback and input
  • Focus on answering the "why" behind a phenomenon, correlation, or behavior
  • Ethnography, for instance, seeks to gain insights into phenomena, groups, or experiences that cannot be objectively measured or quantified, offering a deep dive into the cultural fabric of a community.
  • This method is used to understand how an individual subjectively perceives and imparts meaning to their social reality, often revealing underlying bias that can influence the interpretation of social phenomena.
  • Data analysis techniques include content analysis, grounded theory, thematic analysis, or discourse analysis

Quantitative Research:

  • Focuses on numerical or measurable data
  • Uses sources such as experiments, questionnaires, surveys, and database reports
  • Multiple-choice format
  • Countable answers (e.g., "yes" or "no")
  • Numerical analysis
  • Statistical picture of a trend or connection
  • To define research methods, one must focus on answering the 'what' or 'how' in relation to a particular phenomenon, correlation, or behavior. This foundational approach is crucial in the realm of empirical inquiry.
  • Provides precise causal explanations that can be measured and communicated mathematically
  • The objectives of scientific inquiry often include hypothesis testing to examine causal relationships between variables, making accurate predictions, and generalizing findings to broader populations.
  • Aims to establish general laws of behavior and phenomenon across different settings/contexts
  • Used to test a theory and ultimately support or reject it
  • Empirical research in psychology utilizes examples of quantitative data such as standardized psychological assessments, neuroimaging data, and clinical outcome measures to inform its findings.
  • Data analysis techniques include descriptive and inferential statistics

When selecting research methodology types, it's important to consider various factors such as the study's primary goal, the nature of the research questions and conceptual framework, the variables involved, the context of the study, ethical issues, and whether the focus is on individuals or groups, or on comparing groups and understanding their relationships.

Research design methods play a pivotal role in determining the appropriateness of qualitative methods for studies involving individuals or groups, while quantitative methods are often chosen for studies aimed at comparing groups or deciphering the relationship between variables.

Descriptive Research

Descriptive research is a methodological approach that aims to accurately and systematically depict a population, situation, or phenomenon. It adeptly addresses 'what', 'where', 'when', and 'how' questions, although it steers clear of exploring 'why'. Employing a descriptive research design means observing and documenting variables without exerting control or manipulation, which is particularly beneficial when exploring new topics or problems to identify characteristics, frequencies, trends, and categories.

Descriptive research methods include:

  • Surveys: Survey research is a powerful tool that enables researchers to collect extensive data sets, which can then be meticulously analyzed to uncover frequencies, averages, and emerging patterns.
  • Observations: Utilizing observation allows researchers to collect data on behaviors and phenomena, ensuring the gathered information is not tainted by the honesty or accuracy of respondents.
  • Case studies: Case study research delves into detailed data to pinpoint the unique characteristics of a narrowly defined subject, providing in-depth insights.

Descriptive research can be conducted in different ways:

  • Cross-sectional : Observing a population at a single point in time.
  • Longitudinal : Following a population over a period of time.
  • Surveys or interviews : When the researcher interacts with the participant.
  • Observational studies or data collection using existing records : When the researcher does not interact with the participant.

Advantages of descriptive research include:

  • Varied data collection methods
  • A natural environment for respondents
  • Quick and cheap data collection
  • A holistic understanding of the research topic

Limitations of  descriptive research studies:

  • They cannot establish cause and effect relationships.
  • The reliability and validity of survey responses can be compromised if respondents are not truthful or tend to provide socially desirable answers.
  • The choice and wording of questions on a questionnaire may influence the descriptive findings.

Correlational Research

Correlational research, a non-experimental method, delves into the dynamics between two variables, focusing on the strength and direction of their relationship without manipulating any factors, which is pivotal in understanding associations rather than causality.

Researchers may choose correlational research in the following situations

  • When manipulating the independent variable is impractical, impossible, or unethical
  • When exploring non-causal relationships between variables
  • When testing new measurement tools

In correlational research, the correlation coefficient is measured, which can range from -1 to +1, indicating the relationship's direction and strength. A comprehensive meta-analysis can further elucidate these types of correlations.

  • Positive correlation: Both variables change in the same direction
  • Negative correlation: Variables change in opposite directions
  • Zero correlation: No relationship exists between the variables

Data collection methods for correlational research include

  • Naturalistic observation
  • Archival research or secondary data

Analytical research methods, such as correlation or regression analyses, are employed to analyze correlational data, with the former yielding a coefficient that clarifies the relationship's intensity and direction, and the latter forecasting the impact of variable changes.

Experimental Research

Experimental research, a methodical scientific approach, manipulates variables to observe their effects and is indispensable for establishing cause-and-effect relationships and making informed decisions in the face of inadequate data.

  • Pre-experimental research design : Includes One-shot Case Study Research Design, One-group Pretest-posttest Research Design, and Static-group Comparison.
  • True experimental research design Statistical analysis, a cornerstone in testing hypotheses, is pivotal in research for its accuracy in proving or disproving a hypothesis. It's uniquely capable of establishing a cause-effect relationship within a group, making it an indispensable tool for researchers.
  • Quasi-experimental design : Similar to an experimental design but assigns participants to groups non-randomly.

Experimental research is essential for various fields, such as:

  • Developing new drugs and medical treatments
  • Understanding human behavior in psychology
  • Improving educational outcomes
  • Identifying opportunities for businesses and organizations

To conduct experimental research effectively, researchers must consider three key factors:

  • A Control Group and an Experimental Group
  • A variable that can be manipulated by the researcher
  • Random distribution of participants

Experimental research, whether conducted in laboratory settings with high control variables and internal validity or in field settings that boast both internal and external validity, presents a spectrum of advantages and challenges. Researchers must navigate potential threats to internal validity, including history, maturation, testing, instrumentation, mortality, and regression threats.

Mixed Methods Research

Mixed methods research, an approach that synergizes the rigor of quantitative and qualitative research methods, capitalizes on the strengths of each to provide a comprehensive analysis. This integration, which can occur during data collection, analysis, or presentation of results, is a hallmark of mixed methods research designs.

  • Convergent design
  • Explanatory sequential design
  • Exploratory sequential design
  • Embedded design

The practice of triangulation in mixed methods research enhances the integration of quantitative and qualitative data, offering multiple perspectives and a more comprehensive understanding. It also allows for a deeper explanation of statistical results, as exemplified by the EQUALITY study's exploratory sequential design for patient-centered data collection.

In mixed methods research, the intricate research design and methodology combine qualitative and quantitative data collection and analysis. This purposeful mixing of methods and data integration at strategic stages of the research process can reveal relationships between complex layers of research questions, although it demands significant resources and specialized training.

  • Explanatory
  • Exploratory
  • Nested (embedded) designs

Mixed methods research, characterized by its diverse research design and methods, integrates quantitative and qualitative approaches within a single study. Grounded in positivism and interpretivism, it provides a multifaceted understanding of research topics, despite the challenges of mastering both methodologies and collaborating with multidisciplinary teams.

In sum, a thorough grasp of the various research methodologies is crucial for conducting robust research and critically assessing others' findings. From qualitative to quantitative, descriptive, correlational, experimental, and mixed methods research, each approach offers distinct strengths and limitations, guiding researchers to the most suitable methods for effective data collection and analysis.

As we navigate the vast landscape of information available, understanding what are research methods empowers us to make informed decisions, draw meaningful conclusions, and contribute to the advancement of knowledge across various fields. Embracing the diversity of research methods, whether you're a student, researcher, or simply curious, will enhance your critical thinking skills and enable you to uncover valuable insights that shape our understanding of the world.

What are the seven most commonly used research methods? The seven most commonly used research methods are:

  • Observation / Participant Observation
  • Focus Groups
  • Experiments
  • Secondary Data Analysis / Archival Study
  • Mixed Methods (a combination of some of the above)

What does comprehensive research methodology entail?

Comprehensive research methodology involves conducting a thorough and exhaustive investigation on a specific topic, subject, or issue. This approach is characterized by the meticulous collection, analysis, and evaluation of a wide array of information, data, and sources, with the objective of achieving a deep and comprehensive understanding of the subject matter.

What are the three primary methods to investigate a specific research question?

To investigate a specific research question, you can use:

  • Quantitative methods for measuring something or testing a hypothesis.
  • Qualitative methods for exploring ideas, thoughts, and meanings.
  • Secondary data analysis for examining a large volume of readily-available data.

What does exploration mean in the context of research methodology?

Exploration in research methodology signifies a research approach that aims to delve into questions that have not been extensively explored before. Exploratory research, often qualitative and primary in nature, is focused on uncovering new insights and understanding. Nonetheless, it can also adopt a quantitative stance, particularly when it involves analyzing a large sample size, to further the scope of exploratory research.

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  • Open access
  • Published: 12 April 2024

Building public engagement and access to palliative care and advance care planning: a qualitative study

  • Rachel Black   ORCID: orcid.org/0000-0001-8952-0501 1 ,
  • Felicity Hasson   ORCID: orcid.org/0000-0002-8200-9732 2 ,
  • Paul Slater   ORCID: orcid.org/0000-0003-2318-0705 3 ,
  • Esther Beck   ORCID: orcid.org/0000-0002-8783-7625 4 &
  • Sonja McIlfatrick   ORCID: orcid.org/0000-0002-1010-4300 5  

BMC Palliative Care volume  23 , Article number:  98 ( 2024 ) Cite this article

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Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required.

Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted ( n  = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement.

Three themes were generated from the data: “Visibility and relatability”; “Embedding opportunities for engagement into everyday life”; “Societal and cultural barriers to open discussion”. Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement.

Conclusions

Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Peer Review reports

It is estimated that globally only 14% of patients who require palliative support receive it [ 1 ]. The World Health Organisation (WHO) advocates for palliative care (PC) to be considered a public health issue and suggests earlier integration of PC services within the wider healthcare system is required [ 2 ]. However, research has shown that a lack of public knowledge and misconceptions about PC may deter people from accessing integrative PC services early in a disease trajectory [ 3 ]. Integral to good PC is the facilitation of choice and decision-making, which can be facilitated via advance care planning (ACP). Evidence suggests that ACP can positively impact the quality of end of life care and increase the uptake of palliative care services [ 4 ]. While ACP is commonly associated with end of life (EOL) care, it provides the opportunity for adults of any age to consider their wishes for future care and other financial and personal planning. However, there is evidence of a lack of active engagement in advance care planning (ACP) [ 5 ]. Recent research exploring knowledge and public attitudes towards ACP found just 28.5% of participants had heard the term and only 7% had engaged in ACP [ 6 ]. Barriers to engagement in ACP discussions have been found to include topics such as death and dying are considered a social taboo, posing an increased risk of distress for loved ones; and [ 6 ] a misconception that ACP is only for those at the end of life rather than future planning [ 7 ]. Therefore, there is a need for a public health approach to ACP, to enable and support individuals to engage in conversations about their wishes and make decisions surrounding their future care.

The need for a public health approach to PC, to tackle the challenges of equity and access for diverse populations, was noted in a recent Lancet paper [ 8 ]. This is further supported in a recent review, exploring inequalities in hospice care in the UK, Australia, New Zealand, and Canada which reported that disadvantaged groups such as those with non-cancer illnesses, people living in rural locations and homeless individuals had unequal access to palliative care [ 9 ]. They postulated that differing levels of public awareness in what hospice care provides, and to whom, was an influencing factor with variations in health literacy and knowledge of health services being present in both minority and socioeconomic groups [ 9 ].

Changes in how we experience death and dying have resulted in a shift away from family and community settings into healthcare settings. The Lancet commission exploring the ‘Value of Death’, suggests it has created an imbalance where the value of death is no longer recognised [ 10 ]. The commission’s report posits the need to rebalance death, dying and grieving, where changes across all death systems are required. This needs to consider how the social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed [ 10 ].

New public health approaches that aim to strengthen community action and improve death literacy, through increased community responsibility are reflected in initiatives, such as ‘Compassionate Communities’ and ‘Last Aid’ [ 11 , 12 ]. However, a suggested challenge is the management of potential tensions that are present when attempting to conceptualise death in a way that mobilises a whole community [ 13 ]. Whilst palliative care education (PCE) can be effective in improving knowledge and reducing misconceptions, many PCE intervention studies, have focused on carers and healthcare professionals [ 14 ]. Initiatives such as ‘Last Aid’ attempt to bridge this gap by focusing on delivering PCE to the public, however, they are not embedded into the wider social networks of communities. It can be argued that public health campaigns, such as these are falling short by neglecting to use the full range of mass media to suit different ages, cultures, genders and religious beliefs [ 15 ]. Consequently, to understand what is required to engage the public successfully, the voice of the public must lead this conversation. Therefore, this study sought to explore public views on strategies and approaches to enable engagement with palliative care and advance care planning to help share future debate and decision making.

Within the last decades the delivery of PC and ACP have been increasingly medicalised and viewed as a specialist territory, however in reality, the care of those with life-limiting conditions occurs not only within clinical settings but within a social structure that affects the family and an entire community [ 16 ]. Therefore, death, dying and bereavement involve a combination of social, physical, psychological and spiritual events, therefore, to frame PC and ACP within a public health approach the response requires a shift from the individual to understanding the systems and culture within which we live. The Social Ecological Model (SEM) recognises the complex interplay between individual behaviours, and organisational, community, and societal factors that shape our acceptance and engagement. SEM provides a framework to understand the influences affecting engagement with PC and ACP and has been utilised as a lens through which the data in this study is explored.

Qualitative research, using semi-structured interviews were adopted as this enabled an in-depth understanding of public views on strategies to enable engagement with PC. This research was part of a larger mixed-methods study [ 17 ]. Comprehensive Consolidated Criteria for Reporting Qualitative research (COREQ) were used [ 18 ](See Supplementary file 1 ).

A purposive random sampling method, using a random number generator, was adopted to recruit participants who consented to be contacted during data collection of a larger mixed methods study. Selected individuals were contacted by telephone and email to invite them to participate. Inclusion and exclusion criteria are outlined in Table  1 . Interested individuals were provided with a participant information sheet detailing the aims of the study and asked to complete a consent form and demographic questionnaire.

A total of 159 participants were contacted, 105 did not respond, 21 declined and three were ineligible to participate. A total of thirty participants consented, however, two subsequently opted to withdraw prior to the interview.

Data collection

Data was collected from December 2022 to March 2023 by RB. The qualitative interview schedule comprised four broad topic areas: (1) participants’ knowledge of PC and ACP; (2) sources of information on PC and ACP and current awareness of local initiatives for public awareness; (3) knowledge of accessibility to PC and ACP and (4) future strategies for promoting public awareness of PC and ACP, with a consideration of supporting and inhibiting factors. The interview schedule was adapted from a previous study on palliative care to incorporate the topic of ACP [ 3 ] (See Supplementary file 2 ). This paper reports on future strategies.

Participants were asked to complete a short demographic questionnaire prior to the interview to enable the research team to describe the characteristics of those who participated. These questions included variables such as age, gender, religion, marital status, behaviour relating to ACP and experience of PC.

Data was collected via online interviews conducted using the videoconferencing platform Microsoft Teams. Interviews lasted between 20 and 60 min and were recorded with participant consent. Data were stored on a secure server and managed through NVivo 12 Software.

Data analysis

Qualitative data were transcribed verbatim automatically by Microsoft Teams and the transcripts were reviewed and mistakes corrected by the interviewer. All identifying information was removed. Transcripts were analysed using reflexive thematic analysis which involved a six-step process: familiarisation, coding, generating initial themes, developing and reviewing themes, refining, defining and naming themes, and writing up [ 19 ]. Themes were derived by exploring patterns, similarities and differences within and across the data in relation to participant’s views on the promotion of PC and ACP and the best ways to engage the public in open discussions.

The study explored the data through a SEM lens to provide a holistic framework for understanding the influences surrounding health behaviour change in relation to palliative care and advance care planning by mapping the findings to each of the SEM constructs.

The SEM for public health was conceptualised by McLeroy et al. [ 20 ]., and was based on previous work by Bronfenbrenner’s ecological systems theory [ 21 ]. The SEM looks to identify social-level determinants of health behaviours [ 22 ]. Five factor levels have been identified within the SEM; (1) Intrapersonal factors (2) Interpersonal processes (3) Institutional factors (4) Community factors and (5) Public policy [ 20 ]. In short, the SEM suggests that the social factors that influence health behaviours on an individual level are nestled within a wider complex system of higher levels. Current research literature has explored SEM as a model for understanding barriers and facilitators to the delivery of PC, adults’ preferences for EOL care and older adults’ knowledge and attitudes of ACP within differing socioeconomic backgrounds [ 23 , 24 , 25 ]. It has demonstrated the importance of a multilevel approach within these populations. However, there is a scarcity of research exploring strategies for public engagement with PC and/or ACP which are underpinned by SEM theory.

To ensure rigour in the analysis four members of the research team (RB, SM, FH, EB) independently reviewed the transcripts and were involved in the analysis and development of themes as a method of confirmability [ 26 ].

Ethical approval was gained from the University Research Ethics Filter Committee prior to commencing data collection. Participants provided written informed consent prior to the commencement of the interviews. They were advised of their right to withdraw, and the confidentiality and anonymity of all data were confirmed. All data was kept in accordance with the Data Protection Act (2018) [ 27 ].

All participants were white; 70% were female (n-19) and 70% were either married or cohabiting (n-19). The largest proportion of the sample 44% was aged under 50 years (n-12), with 22% aged between 50 and 59 (n-6) and 33% (n-9) aged between 60 and 84. Over half of the sample was employed (n-15), 15% were self-employed [ 4 ] whilst 26% were retired (n-7). Demographic data were missing for one of the included participants (see Table  2 ).

Responses to questions relating to ACP knowledge and behaviours found just 12 participants had heard of the term ACP prior to completing the Northern Ireland Life and Times Survey. Furthermore, none of the participants had been offered the opportunity to discuss ACP and none had prepared a plan of their wishes and preferences.

Main findings

Three overarching themes were generated from the data: ‘Visibility and relatability’; ‘Embedding opportunities for engagement into everyday life’; ‘Societal and cultural barriers. These findings were then mapped to the five social ecological model (SEM) levels ( individual; interpersonal; institutional; community; and policy ) to demonstrate the importance of a multilevel approach when seeking to engage the public around PC and ACP. See Fig.  1 for SEM construct mapping.

Theme 1: visibility and relatability

This theme relates to the suggestion that social taboo was a barrier to awareness and the mechanism to ameliorate this was visibility – in turn promoting reduction of stereotypes and promoting understanding and engagement. This posits the idea that the lack of understanding of PC is the root cause of much of the stigma surrounding it. The SEM construct mapping suggests a multilevel approach is required with intrapersonal (increased individual understanding), interpersonal (openness in discussion with friends and family through media normalisation) and institutional (health service policies for promotion and support) levels being identified.

Participants discussed how there is a lack of knowledge on what PC is, with many assuming that it was for people in the latter stages of life or facing end of life care. This highlighted the lack of individual education with participants suggesting that there should be more visibility and promotion on PC and ACP so that individuals are better informed.

“So, it’s really um there needs to be more education, maybe, I think around it. So that people can view it maybe differently or you know talk about it a bit more. Yeah, probably demystifying what it is. This is this is what it is. This isn’t what it is. You know, this isn’t about um, ending your life for you, you know. And this is about giving you choices and ensuring that you know, you know people are here looking after you”(P37538F45) .

However, there was a recognition that individual differences play a part in whether people engage in discussions. A number of participants explored the idea that some people just don’t want to talk about death and that for some it was not a subject that they want to approach. Despite this, there was a sense that increasing visibility was considered important as there will still be many people who are willing to increase their knowledge and understanding of PC and ACP.

“I can talk about it, for example, with one of my sisters, but not with my mom and not with my other sister or my brothers. They just refuse point blank to talk about it…. some of them have done and the others have started crying and just shut me. Shut me off. And just. No, we don’t want to talk about that. So, it just depends on the personality, I suppose” (P14876F59) .

The lack of knowledge and awareness of PC and ACP was suggested to be the attributed to the scarcity of information being made available at a more institutional level. For some participant’s, this was felt to be the responsibility of the health service to ensure the knowledge is out there and being promoted.

“I think people are naive and they know they’re not at that stage and they don’t know what palliative care is, you know. It’s all like it’s ignorance. But our health service is not promoting this. Well in my eyes, they’re not promoting it whatsoever. And they should, they should, because it would help a hell of a lot of people ” (P37172M61). “I and I think it needs to be promoted by the point of contact, whether it’s a GP, National Health, whatever it might be, I think when they’re there, there needs to be a bit more encouragement to have that conversation” (P26495M43) .

The lack of visibility within the general practice was discussed by several participants who said that leaflets and posters would be helpful in increasing visibility. One participant went as far as to say that a member of staff within a GP surgery would be beneficial.

“I suppose the palliative care because it is a bit more personal. There should be even maybe a professional that you could talk to in your GP practice, or you know, like they have mental health practitioners now in GP practices. Maybe there are I don’t know if there is or not, but there should be maybe a palliative health practitioner that talks to people when they are at that stage of their life” (P21647F29).

Participants also noted how there were generational differences in how people accessed health information. Many of the participants suggested that they would turn to the internet and ‘google’ for information, however, the suggestion was made that care should be taken to target awareness campaigns to different age groups via different methods to reduce disparities in technology skills such as those with less computer literacy.

“ I think a certain proportion of society need the visibility because they’re not always going to be self-sufficient enough to jump on the Internet even though you know we’re getting to the point now where the generational thing is. The generation have been brought up with the Internet and they’re obviously they go to it as the first point of call. But we still got the generation at the moment that don’t”. (P25046F-)

One of the participants talked about ways to increase visibility via the use of the media, including social media, and the utilisation of famous faces.

“Yeah, I think you know, they need to discuss it on Loose Women. You know, morning TV need to get on the bandwagon….But you know. It only takes like that one celebrity to mention it and then the whole media is jumping on the bandwagon.” (P19874F-) .

The UK media coverage of other successful campaigns such as those highlighting mental health and bowel cancer were noted to have been particularly helpful in raising awareness.

“if I think myself about the whole exposure that we have and as a society at the minute about mental health in general, you know a lot of the work on that has been done via social media. You know, celebrities hash tagging and talked about their experience. It’s OK to not be OK etcetera. And I feel like that is responsible for a lot of people who are now discussing their mental health” (P21647F29) .

The sentiment expressed in the above quotes regarding increased visibility in the media also suggests that unless a topic seems relevant to an individual then they won’t engage with health promotion. This concept of relatability pertains to those aspects of human empathy where they can place themselves within a situation leading it to become more relevant to them.

Many participants discussed that using real-life stories on television and in campaigns would be an effective way to connect with the public and it would make PC and ACP more relatable and highlight the importance of thinking about it.

“I think always what tends to be most effective is when it’s somebody that we could all relate to telling their own story (…)……I’m not too sure I know enough about what it involves, but really, like the consequences, that the consequences that people have suffered from not having done that. Not knowing what the wishes were, not having planned for it”. (P32288F62)

Several participants discussed how the topics of PC and ACP were not something they would identify with as being relevant to them. The suggestion was that without it being an immediate concern, for example, if they were not approaching a certain age, then they would assume that they did not need to increase their knowledge about what PC or ACP involves.

“You have to be able to relate to it in order to think, oh, yeah, that applies to me. You need to have something in which you identify with”. (P13697F51)

Theme 2: embedding opportunities for engagement into everyday life

Throughout the discussions, there was evidence that participants felt that death literacy could be increased by providing more opportunities to gain knowledge about planning for future care and what PC involves. Education was highlighted as a potential pathway to engaging the public by targeting appropriate age groups and professions with relevant knowledge and skills. For some, this was thought to be best achieved through educating the youth and for others, the importance of educating those who are working in the healthcare profession was particularly salient. In addition, almost half of the participants suggested they would approach charity organisations for information, with participants advocating for education within secondary and tertiary levels and within community organisations. This data reflects an institutional-level construct within the SEM framework.

Educating younger generations on the topics of PC and ACP through open discussions in schools, and providing skills on how to have difficult conversations with loved ones were seen to be a valuable strategies.

“ young people don’t have that ability to accept and admit and bring it out into the open and I think they need to be perhaps encouraged more to do that through some kind of teaching in the school environment when they’re at a young and impressionable age ”. (P25046F-)

Due to the difficulties around having conversations about death, it was suggested that different healthcare professionals should be trained to have conversations with their patients.

“Yeah, it’s like you think the discussions are difficult to broach for maybe health care professionals that you know, a difficult topic even for them to bring up. Well, if you’re working with someone who’s you know with a family and where things are quite distressed and very often it can be either, it can be the stress can cause a lot of friction and you know, decision making can be very difficult for people…., but just at every level, there’s, you know, possibility to be having conversations like that with people.”(P37538F45) . “I suppose you could think about training some care professionals (…) there may be some way that as a second part of the person’s job or whatever that they’re trained so that people could go along and discuss ” (P19265F76) .

Further to education for young people and healthcare professionals, there was the recognition that community organisations are perfectly positioned to educate the public in PC and ACP. One participant highlighted the missed opportunity to educate family members and carers through an existing programme on dementia. This is particularly pertinent to ACP due to the impact of cognitive decline on decision-making.

“I went to zoom meetings for four weeks in a row with the Alzheimer’s Society. Umm regarding things to do with dementia. And you know, there was a week about your finances and things like that. I suppose. They never really talked about end of life care you know that sort of thing. Um I suppose it would have been useful had they you know, broached that subject as well. But it wasn’t, you know, there was more about looking after yourself, looking after the person. The symptoms of dementia and all this sort of thing, Alzheimer’s and then you know, um the financial and the help available to you. You know, but they didn’t mention about the end-of-life care and like the end result of dementia, I guess, is death. So, you know that that subject, you know, I was, I suppose to just those organizations that deal with um the issues of, like dementia or, as you say, all the rest for, you know, the rest of the diseases and that. You know to be up front and honest and say you know where this can lead and to make people you know, make people aware that there is a palliative care process that can be gone through.” (P19874F-) .

Furthermore, the option of a helpline was suggested with reference made to other successful charity helplines such as the National Society for the Prevention of Cruelty to Children (NSPCC) and The Samaritans. Whilst it was acknowledged there were specialist support services available for people living with a terminal diagnosis, there was a sense that a generic information support helpline would be helpful.

“You know, people need to be (aware)… they’re not alone. There is help out there. You know, you see your helpline, your children, NSPCC, your Samaritans. All on all these helplines, I have to think, I’ve never seen a helpline for palliative care or who you can contact. You don’t see things like that.” (P22964F52) .

In addition to education, the suggestion that embedding ACP discussions into other more common aspects of future planning such as will making, and organ donation was postulated as a potential way to engage the public. This demonstrated clear links to the policy and institutional level constructs within SEM. Changes within organisational policies and public law to support individuals to consider future planning would promote better engagement on a wider societal level.

Participants suggested that they would like to see some of the conversations surrounding ACP introduced into workplace policies and guidelines, as well as through other legal discussions. They noted that conversations surrounding future planning already occur when discussing legal wills and workplace pensions. The potential to expand these discussions to include ACP with solicitors and in workplaces was seen to be a missed opportunity.

“So maybe um around people who are making their wills and you know, you get will making services advertised and things like that. And I think once you get into your 30s and 40s, people start thinking about a will and things like that. So maybe aligned to something like that, you know would get younger people.” (P13790F67) . “when people talk about the pension, you know so retirement, you know, to make people aware about this as well. You know, I would say that’s probably good ways to reach people” (P21263M54) .

Current legislation and promotion regarding organ donation were discussed as being successful in engaging the public and therefore implied that the government should take a more active role in the promotion of ACP.

“If you look at the way, sort of, government have been promoting like organ donation and that. You know that sort of thing. And then people have really bought into it and you know, and there’s a lot of positivity around it. So, I think that’s sort of similar approach would be good”. (P29453F40) “You know, people talking about pension, pension plans and so on and it’s part of the natural life circle, you know. So, if it’s in connection with this, you know, so think about your future, make your plans …so probably in connection with organ donation and so on, you know, so I think they could be trigger points, you know,, people talking about this.” (P21263M54) .

Theme 3: societal and cultural barriers to open discussion

In conversations surrounding why there was a lack of openness in discussion, participants postulated that a potential factor was the influence of cultural and societal norms. This was found to overlap in the SEM levels of intrapersonal, interpersonal and community.

Rural farming communities were highlighted as potentially being more isolated and traditional in their views around death and dying, whilst those with strong religious beliefs were seen to be less likely to engage in discussions.

“You know, and there is a, I’m out in the countryside. Well, it’s (place name). So it’s a relatively rural sort of conservative place and it and it’s that… you know you’re tied to the land, you’re tied to the farm. This is your home and sending you away from it early it is seen as a bit of a shameful thing. So yeah, to try and educate folk and to try and speak into that I think would be really helpful because again, I’ve seen situations where probably the individual’s life, the end of life, has been made tougher because the family have fought to keep that person at home.…. We’re going to try and do it ourselves” (P26495M43) . “I think it’s probably a lot to do with religion more than likely because people just like to hear, because we still are very much, you know, a lot is dictated by religion. So, people just want to leave stuff in God’s hands so they don’t want to have like…that would be the kind of where my mom and dad are coming from, you know, don’t interfere with it, blah blah blah. So, it’s a very gentle like kind of reminding them, you know, well, I think we do need to think about it. And I think people are afraid that they’ll make again that um it’s kind of euthanasia you know what I mean” (P37538F45) .

Cultural differences between countries were also considered with some seeing other global communities approaching death as a celebration rather than something to shy away from.

“I think in Northern Ireland we are, and the UK and probably the world in general. We are really poor at talking about, about death, and it has to be a positive thing to be able to talk more about death. You look at other cultures where you know. Death is treated differently, you know, even in Africa things where, you know, it’s a real celebration, whereas it’s seen so differently in in Northern Ireland” (P31154F35) .

Furthermore, regions and countries that have experienced war and conflict were perceived by one participant as a potential barrier to engaging in subject matters which involve death.

“I don’t I don’t know about other countries, but those that grew up maybe during the conflict here, maybe it’s just something that, you know it’s it’s a completely different mindset to them” (P23609M39) .

Whilst it is unclear from the data why the participant felt the conflict might inhibit engagement with the subject of dying, it could be interpreted that the participant was suggesting that death is too morbid to engage with following a conflict period which saw numerous deaths. An alternative interpretation could be that people are desensitised to death and do not see death as something that an individual has autonomy over.

It was noted that in many modern societies communities are changing. People no longer interact with their neighbours in the way they used to which results in a reduced sense of community responsibility.

“I don’t know that everyone is as neighbourly as they used to be. Northern Ireland I always perceived as being open door policy and everybody looked out for everyone else. But I think as a society has changed and it has changed in Northern Ireland, and it’s become becoming more closed (…) So I think we need to try and encourage that community um experience back again so that people are mindful of their neighbours and share that responsibility and making sure that everyone’s OK” (P25046F) .

This sense of social isolation was discussed by one participant who referred to homeless people. They reflected on how current social structures may not be providing the information and support to this minority group and therefore should be considered when developing public health approaches to engaging them in PC and ACP education.

“And if you look at homeless people on the streets, where do they get the information from? Where do they get the care, the information, the attention. I know there are Street workers that work, but I don’t know again to what extent in Northern Ireland compared with the likes of London” (P25046F) .

Mapping the findings to a social ecological model framework

Following thematic analysis each of the resulting themes were mapped to the five socioecological levels identified by McLeroy et al. (1988) for health promotion programmes. Construct mapping can be found in Fig.  1 below.

figure 1

Thematic interaction within the Social Ecological Model levels

The findings from this study highlight the complexity of current public perceptions of palliative care and their views on effective engagement with PC and ACP. Within medicalised western culture there is a tendency to focus on the preservation of life, with conversations about death avoided. This has resulted in death becoming a taboo, raising fear and stigma where death is equated with failure. These social taboos that exist around death, dying and bereavement are posited to stem from the lack of awareness and understanding of PC and ACP and the resulting stigma of approaching these discussions. There was evidence of influencing factors on all SEM levels, which demonstrates the need for a multifaceted public health approach that uses not only behaviour change communication but also social change communication, social mobilisation and advocacy. It can be argued this reflects the key aspects outlined in Lancet Commission report on ‘Valuing Death’, which advocated for a ‘systems approach’ [ 10 ]. This systems approach is aligned to differing levels within the SEM and the different approaches the public have identified when seeking to build public engagement and access to palliative care. Three key aspects were noted: visibility, embedding opportunities for engagement in everyday life and societal and cultural influences.

It was clear from the analysis that a major factor associated with poor public engagement was the lack of visibility within the public domain, which was hindering both the normalisation of death and understanding that PC was more than just end of life care. The findings demonstrated different ways to address the lack of visibility, such as the use of targeted social media and wider publicity campaigns. Research to date has demonstrated that palliative care education is a useful tool in improving knowledge of, confidence in and attitudes towards palliative care amongst healthcare professionals and carers [ 14 ]. Similar results have been noted for the public when exploring the potential to promote palliative care through various media challenges such as YouTube and social media [ 28 ]. This does, however, raise questions around the quality and accuracy of information offered via the media, taking cognisance of whether some of the messaging may inadvertently be adding to misunderstanding, and thus a lack of public engagement.

Secondly, the findings indicated that experience at the individual level within a social context was noted as an important element when seeking ways to increase public engagement with PC and ACP. The experience of illness, dying and loss is often overlooked, therefore, this points to the potential value of community-based education approaches, with peers enabling experience-based exchange. Such interventions have been noted in the literature on the role of volunteers and education [ 29 ]. This reflects the need for an overall public health palliative care approach that seeks to empower individuals, families and communities to draw on their own resources and community supports to adapt and cope with death and dying [ 6 , 30 ].

Thirdly, the findings from this study indicated the need for enhancing opportunities for engagement in PC and ACP within everyday life. Research indicates there is an appetite for people to talk about death, for example, in the UK, a recent YouGov ‘daily question’ survey reported 67% of adults who responded think the subject of death and dying should be talked about in schools [ 31 ]. This speaks to the need to consider schools, workplaces and key trigger points in life as times to consider engagement with PC and ACP. This reflects the overall need for death literacy in society to improve experiences at the end of life [ 10 ].

Finally, the importance of socio-cultural aspects for the public cannot be underestimated. Therefore, effective communication strategies need to be tailored to individuals, and communities and be culturally appropriate. This has been noted as an important aspect for specific communities, such as the Chinese diaspora, for example, but nuances around this for specific ethnic, political, religious, and geographical aspects need further consideration [ 32 ]. Cultural competence, defined as an understanding of how culture affects an individual’s beliefs, values and behaviour, is an important consideration [ 33 ]. A meta-analysis of 19 review articles, concluded that interventions to increase cultural competence in healthcare were effective in enhancing the knowledge, skills and attitudes of healthcare providers, leading to clinical benefits for patients/clients through improved access and utilization of healthcare [ 34 ]. The translation of such reviews for public engagement in PC and ACP warrants further exploration. It has been advocated that elements of cultural systems should be analysed with a socio-ecological framework [ 35 ]. Such consideration and integration of salient contextual cultural factors could assist public messaging and cultural communication, which would enhance more effective and sustainable public engagement in PC and ACP.

Limitations

When considering potential limitations, it is pertinent to note that due to the sensitive nature of the topic the exclusion criteria restricted the sample to those who had not experienced a recent bereavement. This may have limited the ability to gain a wider perspective, as the views of the recently bereaved may have provided further nuanced insights into how best to engage the public. Furthermore, the participant sample was limited to those involved in a larger mixed-methods study. This may have introduced bias in relation to true knowledge and attitudes due to the participants having completed the survey questionnaire prior to the interviews.

In conclusion, this qualitative study has provided insights into how the public would like to be engaged in PC and ACP. The findings highlighted that to build public engagement and access to palliative care and advance care planning a multifaceted public health approach is required. Discussions of death and dying remain difficult for many members of society, therefore, an increase in death literacy across all systems to reduce misperceptions surrounding PC and APC is needed, by increasing visibility and providing opportunities for the public to engage with PC and ACP within everyday life. Finally, socio-cultural aspects need consideration when developing strategies to ensure effective communication and engagement with all members of the community.

Data availability

The datasets analysed are not publicly available but are available from the corresponding author upon reasonable request.

Abbreviations

Advance care plan

  • Palliative care

Palliative care education

Social ecological model

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Acknowledgements

The authors would like to thank all interviewees for their participation in the research.

This study was funded by HSC R&D Division of Public Health Agency in Northern Ireland.

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Black, R., Hasson, F., Slater, P. et al. Building public engagement and access to palliative care and advance care planning: a qualitative study. BMC Palliat Care 23 , 98 (2024). https://doi.org/10.1186/s12904-024-01420-8

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  • Advance care planning
  • Social Ecological Model
  • Death literacy
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  • Public health
  • Death and dying.

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  • Joshua P. Vogel 1 , 2 &
  • Tracey Bucknall 1 , 3 , 5  

BMC Pregnancy and Childbirth volume  24 , Article number:  262 ( 2024 ) Cite this article

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Pregnant and postpartum women’s experiences of the COVID-19 pandemic, as well as the emotional and psychosocial impact of COVID-19 on perinatal health, has been well-documented across high-income countries. Increased anxiety and fear, isolation, as well as a disrupted pregnancy and postnatal period are widely described in many studies. The aim of this study was to explore, describe and synthesise studies that addressed the experiences of pregnant and postpartum women in high-income countries during the first two years of the pandemic.

A qualitative evidence synthesis of studies relating to women’s experiences in high-income countries during the pandemic were included. Two reviewers extracted the data using a thematic synthesis approach and NVivo 20 software. The GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) was used to assess confidence in review findings.

Sixty-eight studies were eligible and subjected to a sampling framework to ensure data richness. In total, 36 sampled studies contributed to the development of themes, sub-themes and review findings. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen review findings were developed under these themes with high to moderate confidence according to the GRADE-CERQual assessment.

Conclusions

The findings from this synthesis offer different strategies for practice and policy makers to better support women, babies and their families in future emergency responses. These strategies include optimising care delivery, enhancing communication, and supporting social and mental wellbeing.

Peer Review reports

As of February 2024 SARS-CoV-2 has infected over 774 million people, and 7 million deaths have been attributed to coronavirus 19 (COVID-19) infection [ 1 ]. Maternal and newborn health services are essential for pregnant and postpartum women, and the COVID-19 pandemic significantly altered provision and access to routine care. Reduced services, limited face-to-face care, transition to virtual and remote care, and limited access to maternity care providers were commonly cited as barriers to accessing quality care by pregnant and postpartum women [ 2 , 3 , 4 , 5 , 6 ]. Additionally, reduced lengths of stay within hospitals and restrictions on support people imposed by health facilities have impacted women receiving care and placed an additional burden on nursing and midwifery staff [ 7 , 8 , 9 ]. This had significant impacts on pregnant and postpartum women’s emotional and psychosocial wellbeing.

Pregnant women and their babies were at an increased risk of adverse effects if she contracted SARS-CoV-2 [ 10 , 11 ]. The direct impacts of the COVID-19 pandemic were largely focused on the clinical manifestations of SARS-CoV-2 such as symptoms, risk factors, management and treatment, as well as adverse maternal and newborn outcomes [ 12 , 13 , 14 , 15 ]. However, at a wider level, the impacts of policy changes, health system reforms and changes to maternity care services indirectly affected the provision of care for all women giving birth over this time period. Women’s experiences of the transition from pregnancy to motherhood were also impacted. For example, in many countries, pregnant women were encouraged to homestay at home, receive care through telehealth rather than face-to-face and reduce face-to-face education [ 16 , 17 ]. Isolation from family, friends and peers has negatively impacted women’s mental health, with increased levels of anxiety, depression and stress globally [ 18 , 19 , 20 , 21 ].

Since the beginning of the pandemic, there has been a plethora of qualitative studies on women’s experiences [ 19 , 22 , 23 , 24 , 25 , 26 ] – the significant volume of papers highlights the need for a clear synthesis. Reviews of qualitative evidence have reported pregnant women’s experiences of social support [ 27 ], as well as highlighting the challenges they faced as they embraced motherhood during the pandemic [ 28 ]. Collating the evidence in a systematic and transparent manner will allow policymakers to consider the indirect implications of public health restrictions on the physical, emotional, and psychosocial health and wellbeing of pregnant and postpartum women.

Qualitative evidence synthesis (QES) is an approach that can systematically collate qualitative data in a transparent manner to inform policy and practice [ 29 ]. Findings from a QES can enable a richer interpretation of a particular phenomenon and enable a greater understanding of individual experiences, views and beliefs [ 30 ]. This QES aimed to explore, describe and synthesise the experiences of pregnant and postpartum women living in high-income countries during the first two years of the COVID-19 pandemic. This research method allows a deeper understanding of their views and experiences during this time. It also facilitates identification of areas of improvement for maternity care services, to ensure high-quality care is available at all times.

A QES was undertaken to identify, evaluate and summarise findings from qualitative studies providing a cohesive and transparent documentation of the contextual variations, stakeholder preferences and experiences to ultimately influence policy and practice [ 31 , 32 ]. This type of synthesis integrates diverse perspectives, which is needed to capture the complexity of the indirect impacts of the COVID-19 pandemic on pregnant and postpartum women’s experiences. This QES was structured to include findings from qualitative studies, as well as qualitative findings from mixed-methods studies. Emphasis was placed on including different types of qualitative evidence that can potentially enrich a synthesis, such as narrative data from qualitative components of mixed-methods studies or free-text from questionnaires [ 29 ].

We followed the relevant Cochrane guidelines [ 29 ] and used the “Enhancing transparency in reporting the synthesis of qualitative research” (ENTREQ) statement to guide our approach and reporting (Supplementary 1 , S1) [ 33 ]. In addition, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for reporting the different phases of identifying studies was used as recommended by the ENTREQ statement (S 2 ) [ 34 ]. The protocol and systematic review were not registered.

Eligibility criteria

We defined “indirect impacts of the pandemic on women”, to mean the impact of regulations, recommendations and public health measures enforced by governments as a response to the COVID-19 pandemic had on pregnant and postpartum women and their newborns. We adopted the World Health Organization’s definition of the postpartum period beginning immediately after birth of the baby and extending to six weeks (42 days) after birth [ 35 ].

Participants within these studies were those who were pregnant or within the postpartum period, of childbearing age (15-49 years), and received any type of maternity care during the COVID-19 pandemic. Studies of women with pre-existing comorbidities were also eligible, as well as those focused on migrants, refugee populations or ethnic minority groups. To facilitate exploration of findings from women of diverse backgrounds we have used the term ‘culturally and linguistically diverse (CALD) populations’. We focussed on women living in high-income countries (HICs). Studies were included if they were conducted in countries listed in the Organisation for Economic Co-operation and Development (OECD) [ 36 ] and Human Development Index (HDI) list of “Very high human development” list [ 37 ]. This allowed for similar contexts and countries to be compared.

Eligible study designs were those that addressed the indirect impact of COVID-19 using qualitative methodologies, including phenomenology, ethnography, grounded theory studies and case studies. We also included any study that obtained data through qualitative methods for data collection such as, interviews, focus groups, online forums and document analysis.

The decision to limit the eligibility based on year of publication, to only include studies published in the first two years of the COVID-19 pandemic (1 st Jan 2020 – 1 st Jan 2022) was to emphasise the impact of the stricter restrictions and lockdowns during this time period. Globally, public health measures to reduce spread and transmission included, mandatory quarantine, limiting movement, lockdowns, closure of schools and workplaces and shielding of vulnerable populations. These measures were significantly harsher during the first two years and subsequently relaxed as vaccine roll-outs occurred and infection rates began to decline [ 38 , 39 ]. The Oxford Coronavirus Government Response Tracker reported a stringency index which reiterates the trend of harsher restrictions implemented by governments throughout 2020-2022 time period and reflects the gradual decline after this date [ 40 ].

Search strategy

Six electronic databases (EBSCO Medline, Embase, APA PsycInfo, CINAHL and Maternity and Infant Care (MIDIRS)) were searched to identify all qualitative research articles published between 1 st January 2020 – 1 st January 2022. Search strategy included terms such as, “pregnan*”, “postpartum”, “mother”, “views”, “experiences”, “opinion*”, “indirect”, “COVID-19”, “coronavirus”. The search strategy was reviewed by a university librarian (S 3 ). Search hits from each of the databases were imported into Endnote 20 which was then used as our reference library. References were imported into Covidence for screening [ 41 ].

Study selection and sampling framework

Two review authors (AT, AB) independently screened titles, abstracts and full texts for inclusion, with any conflicts resolved by discussion or consulting a third author. Reasons for exclusion are described within PRISMA flowchart (Fig. 1 ). Sixty-eight studies were included following full-text review. The Cochrane guidelines for QES highlight that for reviews with large amounts of primary studies (50 or more) can result in a high volume of data, which can threaten quality of the synthesis. In such situations, a sampling framework can enhance the quality and diversity of the papers and ensure the number of studies and amount of data are manageable [ 42 , 43 , 44 ]. A QES worked example by Ames et al., 2019 was used as a guide to develop the sampling framework for data richness [ 45 ]. Two independent reviewers scored included studies from 1 to 5 based on the criteria outlined in Table 1 , to ensure that the sampling framework was reliable and replicable. Any conflicts were resolved by discussion, or a third review author was consulted. Studies with a score ≥4 were included for data extraction and are referred to as ‘sampled’ studies (S 4 ).

figure 1

Reporting of adapted PRISMA flowchart of included and sampled studies in accordance with PRISMA and ENTREQ guidelines [ 33 ]

Quality assessment

The Critically Appraisal Skills Program (CASP) tool for qualitative research was used by two independent review authors (AT, AB) to assess methodological limitations of sampled studies (S 5 ) [ 46 ]. Any disagreements were resolved through discussion, or when required, a third review author was consulted. Sampled studies were graded as no or very minor, minor, moderate or severe concerns with methodological limitations.

Data extraction and synthesis

A “Characteristics of sampled studies” table was created in Excel and details are reported in Table 2 . Two independent reviewers familiarised themselves with the sampled studies and extracted key themes using Braun and Clarke’s reflexive approach to inductive and deductive thematic analysis [ 47 ]. Data were managed using NVivo 20 [ 48 ]. This was an iterative process as many of the themes and sub-themes overlapped and were relevant in many aspects throughout the perinatal period (Table 3 ). The findings were developed iteratively, and periodically shared with the broader team to evolve our interpretation. Any quotes taken from studies were selected as they reiterated findings, and provided additional depth and meaning to review findings.

Extracted data were populated into two tables for analysis. The first table collated quotes and author interpretations of findings (S 6 ), whilst the second table summarised these into review findings (Table 4 ).

Assessment of confidence in the review findings (GRADE-CERQual)

The GRADE-CERQual tool assesses the confidence in review findings from qualitative evidence syntheses [ 83 ]. Lewin et al., 2018 state that that “the approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation” [ 83 ]. The GRADE-CERQual Interactive Summary of Qualitative Findings (iSoQ) online platform was used to manage and assess confidence in review findings [ 84 ].

Confidence in review findings was determined based on four criteria: methodological limitations, coherence, adequacy and relevance [ 83 ]. For each criterion, review authors determined if there were no or very minor, minor, moderate or serious concerns. An overall GRADE-CERQual assessment of confidence was placed on the findings, levels included: high, moderate, low and very low confidence. Review findings are considered at the highest confidence level and downgraded as there are greater concerns for each individual criterion (Table 4 ). This process was conducted by two authors, with any disagreements resolved through discussion and consulting other authors.

Managing our own reflexivity

Throughout the conceptualisation, data collection and analytical process, the authors considered their own individual views and beliefs about maternity care during the COVID-19 pandemic. As clinicians and researchers working on maternity care (including during the pandemic), we recognised that the COVID-19 period impacted indirectly on women and babies, including their experiences of care, their own anxieties and worries. We are public health professionals with diverse backgrounds including nursing and midwifery, maternal and newborn health, epidemiology and qualitative health research. We met regularly, both to explore the findings and the processes but also to ensure that we separated our individual experiences and beliefs on the interpretation of the analysis and the findings. Employing a systematic and transparent approach to the analytical process, such as including reflection notes after analysing each sampled paper, facilitated collaborative discussions, ensure objectivity and reduced the impact of personal biases.

A total of 36 studies contributed to the synthesis of qualitative evidence to understand pregnant and postpartum women’s experiences during the first two years of the pandemic. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen sub-themes were developed within these 6 themes and illustrative quotes are presented in Table 3 to demonstrate theme development. Themes were categorised to differentiate major disruptors to the pregnancy and postpartum period and sub-themes aimed to categorise the indirect impacts that occurred within the major themes.

Characteristics of contributing studies

After applying the sampling framework (data richness score ≥4), 36 sampled studies were included for data extraction and analysis. Thirteen out of 36 studies had a score of 5 [ 49 , 52 , 57 , 58 , 61 , 62 , 63 , 66 , 68 , 69 , 71 , 77 , 82 ], with the remainder scoring 4 [ 9 , 16 , 50 , 51 , 53 , 54 , 55 , 56 , 59 , 60 , 64 , 65 , 67 , 70 , 72 , 73 , 74 , 75 , 76 , 78 , 79 , 80 , 81 , 82 ] (S 5 ). Most studies ( N =27/36, 75%) used specific qualitative methodologies, six were mixed-methods studies, two were cross-sectional studies, and one was a case series report.

Studies were conducted across nine countries, almost one-third ( N =10/36, 28%) of studies published from the UK, Canada ( N =7) and the USA ( N =7) (Table 2 ). Country-specific responses to the pandemic largely included border closures, mandatory lockdowns and restrictions on movement; it is interesting to note that Sweden did not mandate this but instead enforced social distancing practices [ 68 ]. Additionally, some studies reported on a specific sub-population of pregnant and postpartum women, for example women from ethnic minority groups, those with pre-existing comorbidities, and those who were COVID-19 positive. Some studies also included results from women with babies who were greater than 6 months of age, and any findings directly from these participants were omitted from analysis where possible.

The number of participants in studies that conducted interviews ranged from 3 to 84, and studies using qualitative data from open-ended questions or survey data included responses from 16 to 4,611 participants. Where demographic data were available, approximately 1,192 women were primiparous (having their first baby) and approximately 8,017 women were surveyed or interviewed postpartum. Sampled studies were generally of high quality and assessment of methodological limitations indicated that 29 studies were assigned “no or very minor concerns”, six studies were assigned “minor concerns”, and one study was assigned “moderate concerns”. When available, quotes obtained from studies have included additional demographic data. Factors included pregnant or postpartum status at time of data collection, parity and geographical location.

Theme 1: Dealing with public health restrictions

The rapid introduction of public health restrictions has had adverse effects on mental health, social isolation, and the pregnancy experience. Women had to navigate these restrictions and adapt accordingly, realising quickly that their pregnancy and postpartum experience was going to be very different from their expectations.

Sub-theme 1.1. Limited support networks from health care system and providers (High confidence)

Support networks were limited. Women felt that they were “on their own”, “unimportant or irrelevant” or treated as “second class citizens” after birth, because of a lack of physical supports from healthcare providers [ 51 , 60 , 61 , 62 , 70 , 72 , 74 ]. Limited or no access to physical and social support networks was commonly cited as a reason for deteriorating mental health.

Sub-theme 1.2. Balancing exposure risk and need for healthy behaviours (High confidence)

Women balanced COVID-19 exposure risks by shielding, either because of health providers recommendations [ 16 , 69 ] or because they felt it was needed to protect their baby [ 50 , 68 , 71 , 77 , 81 ]. Women delayed or postponed antenatal appointments [ 50 , 57 , 69 , 72 , 82 ], opted for induction of labour [ 74 ], or waited until labour was quite advanced before attending hospital [ 60 , 61 , 77 ]. These decisions were due to pandemic-induced fear, and the perceived risk of infection in a high-risk environment such as the hospital [ 16 , 56 , 80 ].

Sub-theme 1.3: Missing out on social opportunities (High confidence)

Women felt sad, unseen and heartbroken that they were not able to have social opportunities, especially sharing their newborns with family and friends [ 9 , 54 , 56 , 61 , 66 , 70 , 71 , 75 , 76 ]. On postnatal wards, women with older children were disappointed that their nuclear families could not visit and bond with their newborn in the early postpartum period [ 56 , 59 , 80 , 82 ]. While this was disappointing for many, one woman described still feeling well-supported, “ we were supposed to have a baby shower, the weekend after everything shut down … definitely got a lot of gifts in the mail and people who drop things off …. [we] feel like even though he’s being born in this super crazy time and he doesn’t necessarily get to meet people in person, that they are excited about him and want to support us” (USA) [ 52 ]. Primiparous women felt that they missed the opportunity to share many “firsts” with extended families - one woman said, “ this is my family’s first grandchild so it just breaks my heart they will miss her whole babyhood” (postpartum, Canada) [ 64 ].

Sub-theme 1.4 : Breastfeeding challenges and triumphs (High confidence)

Women that struggled with the lack of support around breastfeeding said, " when it came time for breastfeeding, I had no idea what to do or any challenges that could come. There were so, so, so many questions and I felt so confused during everything” (postpartum, primiparous, UK) [ 60 ]. Lactation consultations through virtual remote care was considered inadequate by most women [ 51 , 66 , 71 , 73 , 75 ], especially when practical hands-on education and assistance was needed [ 51 , 53 , 72 , 77 ]. These challenges led some women to cease breastfeeding early [ 51 , 62 , 73 ].

Conversely, public health restrictions enforcing women to stay at home allowed some women to practice responsive breastfeeding, without concern for social obligations or visitors [ 51 , 62 , 64 , 71 , 75 , 79 ]. Some women valued this flexibility - “ there’s no right or wrong way. You know, at the end of the day the ultimate goal is that my baby needs to be fed.… you know, feed him breast milk, breast milk, or formula. He’s fed. He’s happy. Sweet. That’s done. Job done! The important thing is actually [to] be kind to yourself, you know?” (postpartum, primiparous, UK) [ 62 ].

Challenges and triumphs were felt by both multiparous and primiparous women [ 51 ]. The difference between experienced and first-time mothers was stark in some studies, highlighted by multiparous women who felt ‘knowledgeable’ and ‘had the experience’, and sharing empathetic messages towards primiparous women with limited breastfeeding support [ 62 , 78 ].However, the lack of face-to-face breastfeeding support meant that first-time mothers and experienced mothers also faced hardships. As one mother recounts her sadness: “ I had virtual appointments [with lactation consultants], which I found totally useless… I was devastated that it wasn’t working with [the new baby] because it was something I was really looking forward to” (postpartum, multiparous, Canada)  [ 73 ].

Theme 2: Navigating changing health policies

The ever-changing nature of the pandemic created periods of uncertainty. Women and their families were expected to accept and adapt to changing health policies which directly impacted their antenatal, labour and birth and postnatal experiences.

Sub-theme 2.1: A birthing experience filled with uncertainty and unknowns (High confidence)

Many women reported that, given the constantly changing policies, they were unsure what to expect for their labour and birth [ 9 , 49 , 60 , 75 , 77 ]. Limitations included not being able to have a water birth, use a bath or the shower, access nitrous oxide gas during labour [ 49 , 74 , 82 ] and others could not have their desired support people present [ 60 , 77 ]. In some cases, women opted for medicalised interventions to retain a sense of control - choosing a caesarean birth to ensure their partner was present at birth [ 60 , 74 ]. Women struggled with the prospect of early discharge, lacking confidence and fearing reduced support at home, with some feeling pushed out of the hospital [ 49 , 53 , 60 , 74 ]. Some women chose to leave hospital early due to the lack of support or poor experiences while in hospital [ 60 ]. Conversely, some women welcomed early discharge, wanting to be away from the hospital and to be reunited with family members [ 62 , 80 ]. Women who tested positive to COVID-19 early in the pandemic described additional challenges, such as a lack of certainty on how care was going to be managed [ 77 ]. They felt this restricted their autonomy over their labour and birth choices.

Sub-theme 2.2: Reduced support and partner presence healthcare settings (High confidence)

Due to the public health restrictions in hospitals, women often missed having their partner and family supports [ 16 , 49 , 57 , 66 , 71 ]. For example, “ one of my coping mechanisms is having my partner there to hear the same things I am hearing because I kind of shut down sometimes when I get too upset. It’s always good to have that second person listening… and walking out with strength of unity ” (pregnant, primiparous, Australia) [ 49 ]. The inability for some women to have their partners present negatively impacted women’s birthing experience [ 53 , 70 , 79 , 80 ], confidence on the postnatal ward and many expressed the sense of being “ robbed of this experience ” (pregnant, UK) [ 75 ].

Sub-theme 2.3: Transitioning to telehealth, virtual and remote care (Moderate confidence)

Public health restrictions limited face-to-face health care appointments with a maternity care provider [ 54 ]. Negative telehealth experiences were expressed predominantly by first-time mothers [ 71 ], with many saying, “ over the phone just doesn’t do it… you don’t get to look into somebody’s eyes and to trust them and for them to say, you’re okay ” (postpartum, Ireland) , adding to their anxieties. This was felt similarly by CALD women as there was a disconnect with health care providers using virtual methods and this was exacerbated for women who were not able to access interpreters [ 80 ]. Positive encounters with telehealth were associated with the increased accessibility to health services and generally preferred by multiparous women [ 54 , 65 , 68 ]. Whilst many were glad that telehealth services were available, this woman highlighted the inequities, “ I think I would question the accessibility of that. Not everyone has a smartphone and expecting people to be able to receive a video call is not necessarily the most inclusive thing ” (postpartum, primiparous, UK) [ 77 ] indicating that some women may have fallen through the gaps of maternity care.

Sub-theme 2.4: Barriers to accessing health services (High confidence)

The closure of so-called non-essential services, such as, physiotherapists, chiropractors, pools and gyms indirectly impacted women [ 66 , 74 ]. This often increased women’s anxiety, stress, feelings of helplessness and frustration [ 16 , 54 , 60 , 74 ] and incidence of postnatal depression [ 82 ]. This also limited opportunities to receive reassurance from healthcare providers, reducing women’s confidence [ 49 , 71 , 72 , 77 ]. Typically, women accessed networks for information and support, such as, family and friends with midwifery clinical expertise, or referred to recent pregnancy experience [ 52 , 68 , 75 , 79 ]. Women had to advocate strongly for physical assessments for themselves and their newborns [ 74 ].

Additionally, women from CALD populations were challenged in accessing culturally appropriate care with changes to interpretation services, “it creates like a…a gap in communication where if something you express is not clearly understood so maybe they could be left with some misinterpretation” (UK) [ 63 ]. Another example of the inequities faced by CALD women was expressed by this woman who did not receive interpretation services during appointments, “ sometimes they explained things to me by using signs and I understand a little English but it’s hard to understand medical terms and they didn’t use an interpreter for this ” (postpartum, multiparous, Canada) [ 80 ].

Theme 3: Adapting to alternative ways of receiving social support

Support networks, such as, family and friends, peer support groups (e.g. mother’s groups), and formal support from maternity care providers provide the foundation for a healthy and positive pregnancy and postpartum period. The COVID-19 pandemic forced women to adapt and seek support in different ways.

Sub-theme 3.1: Accessing support through different avenues (Moderate confidence)

Support from family and friends was accessed in different ways, for example, utilising video call technologies to be able to see faces helped with the grief of not being able to be present [ 16 ]. Women who were able to establish pregnancy and mother’s groups during the pandemic were grateful that they had these supports. Alternatively, women created or sought support through online social media platforms [ 61 , 68 , 70 , 81 ], to share a sense of camaraderie that they were not alone in their experiences [ 52 , 77 ]. In these forums, women shared information about COVID-19 developments, updates to hospital policies, and utilised others as sounding boards for advice. Some women reported greater support from partners who had transitioned to working from home [ 51 , 62 , 64 , 66 , 75 ]. Although virtual technologies allowed women to bridge the gap of social distancing, they wanted the physical connection with others.

Sub-theme 3.2: Desiring connection with family and friends (High confidence)

Women felt they needed intergenerational support to raise their newborns, and this was especially important during difficult times. Many had planned for parents to come and support them [ 81 ], as they believed that, “ the older generation have more experience on what babies need or what they feel… with my other two [children]… they knew exactly what would make them feel better ” (pregnant, multigravida, Australia) [ 49 ]. Some women struggled without the additional support, the lack of sleep impeded their physical wellbeing [ 61 , 73 , 75 ], and the isolation from family impacted their mental health [ 9 , 49 , 56 , 60 , 61 , 73 ]. In some cases, women were able to “ quarantine with family ”, providing women with a “ strong support network ” (postpartum, Canada) as they transitioned into motherhood [ 59 ]. Gradually, as public health restrictions eased, women from the UK felt government responses did not consider new mothers and babies and they called for “social bubbles” for families to receive the additional support [ 62 , 72 ]. The loss of informal support networks was apparent for some CALD women. As this woman said, “it was really hard during COVID. In Syria I had my family… but to give birth here with no one with me?! I needed someone with me, my neighbours, my friends… I felt like I was drowning” (postpartum, multiparous, Canada) [ 80 ].

Theme 4: Dealing with impacts on their own mental health

The COVID-19 pandemic placed a significant toll on pregnant and postpartum women’s mental health at all stages of the pandemic. Public health strategies failed to include protective measures for mental health, as such many women reported increased levels of fear, anxiety, stress, loneliness and depression.

Sub-theme 4.1: Managing anxiety due to virus-related fears and concerns (Moderate confidence)

Women often experienced anxiety exacerbated by the pandemic, for example, “ as a new mom you are already so nervous, so adding a pandemic to that pile of anxiety and worry ” (postpartum, Canada) [ 70 ]. This was related to possibility of infection, particularly in hospital and healthcare settings [ 9 , 56 , 57 , 69 , 82 ], and the need to protect their unborn or newborn baby [ 50 , 72 , 80 ]. Some faced additional challenges as migrants from another country, “ I found it very hard when you’re coming to the country without knowing anyone and the coronavirus, lockdown was very difficult, I was very depressed. I was very anxious… I feel worried a lot ” (UK) [ 63 ].

Sub-theme 4.2: Feeling lonely and isolated (High confidence)

Loneliness and isolation were commonly reported as women faced motherhood alone without their usual support systems. One woman said, “ it was quite sad that I couldn’t even share my pregnancy experience with anyone, and I feel like I missed out ” (postpartum, Australia) [ 54 ]. Feelings of loneliness was especially felt by mothers who were not able to have their partners present during birth or postnatally [ 61 ]. Women were not able to build supportive peer networks in their antenatal and postnatal periods [ 49 , 62 , 73 , 74 , 75 , 78 , 81 ], with one woman saying, “ there’s nothing like just meeting people or, just naturally building friendships when you go to baby groups” (postpartum, multiparous, UK)  [ 62 ] emphasising the importance of developing social relationships. Cancellation of appointments and lack of face-to-face care added to feelings of “ abandonment ” and “ being forgotten ” [ 9 , 60 , 62 , 70 , 72 , 73 ].

Theme 5: Managing new and changing information

Due to the novelty of COVID-19 and lack of information about adverse effects, maternity care services had to rapidly adapt as new data came to light. Women described the need to search, access and filter useful information, a process which was challenging for many.

Sub-theme 5.1: Constantly changing advice and information (High confidence)

The constantly changing advice was distressing [ 82 ]. These changes meant a lot of uncertainty, one woman said, “ at 34 weeks I had a telephone appointment and I tried to ask what the changes in hospitals were, because of COVID and talk about the birth plan. She basically said, ‘everything is changing so quickly there is no point in us even talking about that now. Wait until your next appointment’ ” (postpartum, primiparous, UK) [ 77 ]. This limited women’s ability to adequately plan and prepare for the birth. Some women described following the updates from government officials and hospitals overwhelming [ 66 ]. As restrictions eased, women described the frustrations they had with the slow adaptations by health services, “ when I got to the hospital, they didn’t know about the restrictions having been lifted … That was really frustrating because I was like why? Why does this hospital not know?” (Australia) [ 82 ] and the differences between health services, “ restrictions have still not been lifted in ‘Hospital A’ whereas they have been eased in both ‘Hospital B’ and ‘Hospital C’ ” (pregnant, multiparous, Ireland) [ 9 ].

Sub-theme 5.2: Inadequate information from healthcare providers (Moderate confidence)

Women felt there was not enough information from healthcare providers, “ I think there was a lot of confusion; there was no good communication about what was happening to appointments. You weren’t really sure; were they happening on the phone [telehealth], when were you going to get the call? There was very little communication. So, I always felt a bit uneasy about that… ” (postpartum, primiparous, UK) [ 77 ]. Some information was contradictory [ 60 ] for example, “ I’ve found the disconnect between the information that my GP was getting and that the [hospital] was getting – they weren’t getting the same ” (Australia) [ 82 ]. Women wanted clear information that was easily accessed by the lay person [ 9 , 16 , 54 , 61 , 65 , 66 , 67 , 68 , 75 ]. They also wanted uncertainty to be acknowledged, “ it would have been useful to have some generic information that went out to women in that situation… statements from a medical professional to put people’s minds at ease ” (postpartum, Australia) [ 54 ].

Theme 6: Being resilient and optimistic

Many women were self-reliant and took it upon themselves to remain positive and proactive throughout the perinatal period.

Sub-theme 6.1: Self-help strategies to overcome challenges of the pandemic (High confidence)

Women developed their own strategies to find solace and support [ 77 ]. When asked what advice they had for other women in similar situations, advocacy for oneself was frequently reported [ 66 , 67 , 70 , 71 , 77 , 79 , 81 , 82 ]. In contrast, another woman regretted not voicing her concerns, “ I have naively trusted that the hospital gives me the information I need … Then I realized afterwards that there were many moms who were much angrier than me and said much more; insisted much more… and I simply did not; I regret it a bit ” (postpartum, Norway) [ 67 ]. Women reported coping using different strategies, such as being outdoors and active [ 16 , 52 , 54 ], limiting news and access to social media platforms [ 54 , 69 , 70 , 81 ], seeking professional help [ 58 , 73 ], informing themselves about the virus [ 58 , 71 ], drawing on their own faith and religion [ 52 , 69 ] and self-reassurance [ 50 , 52 , 62 ]. Many complied with public health restrictions, however there were some women that decided their mental health and physical wellbeing was more of a priority and broke public health restrictions to seek support from family and friends [ 62 , 66 , 73 ]. Despite the challenges faced during the pandemic, some women reported high resilience, positive childbirth and postnatal experiences, and feeling empowered by their ability to overcome challenging circumstances [ 54 , 58 , 74 ].

Sub-theme 6.2: Making the most out of the positive encounters (Moderate confidence)

The lack of visitors on the postnatal ward and in homes was described by women as “ pleasant ”, “ relaxing ” and a “ blessing in disguise ” as women were able to recover and establish undisrupted routines with their newborns [ 54 , 71 , 72 ]. A commonly reported positive outcome of limiting social obligations was the ability to establish successful breastfeeding, one woman said, “ I was inundated with visitors with my first child and often could not feed responsively… With my second child, there is none of that pressure and I can really see an enormous difference both is his feeding and in my mental health ” (postpartum, UK) [ 51 ]. Women also described health services as “ peaceful ”, as there were fewer people in waiting rooms, appointments were quick, social distancing was enforced and use of PPE limited the possibility of transmission [ 16 , 49 , 71 , 75 , 81 , 82 ].

Sub-theme 6.3: Information seeking and desire for more information (Moderate confidence)

Women obtained information from official government documents, guidelines released by professional bodies, the news, social media and platforms run by professional academics [ 53 , 66 , 68 , 72 , 81 ]. Reasons to seek information included: to clarify any uncertainties about risk and infection, keep up to date with COVID-19 guidelines and to be informed about changes to hospital policies [ 49 , 52 , 66 , 69 , 77 ]. Even once women were provided with information, poor communication and follow up left women feeling dissatisfied [ 54 ]. One woman shared advice about engaging with different information sources – “ you can’t just trust them – you’ve got to decipher through what’s true and what’s not… Is that actually having a positive influence on me, and my mental and physical health, or not? And if it’s a no, well why am I engaging in this ?” (Australia) [ 81 ].

This QES synthesised data from 36 sampled studies on pregnant and postpartum women’s experiences from high income countries during the COVID-19 pandemic. Findings were categorised under six overarching themes and 17 review findings to understand their experiences as the pandemic unfolded. Women had to navigate the transition from pregnancy to motherhood, whilst also adapting to the complexities of the COVID-19 pandemic. High to moderate confidence was placed in these review findings, indicating the strength of the evidence.

This review highlights that pregnant and postnatal women across high-income countries faced similar yet inherently unique experiences and challenges. During the pandemic, primiparous women faced moderate-to-high prenatal stress levels, as they recounted their first pregnancy experience during a time of significant uncertainty [ 85 , 86 , 87 ]. On the other hand, some evidence highlighted that multiparous women were ‘adaptive’ and felt ‘prepared’ [ 66 , 71 , 77 ]. However this was not experienced universally - many experienced mothers facing difficulties [ 9 , 73 , 80 ]. The COVID-19 pandemic and associated public health restrictions across high-income countries disrupted access and quality of care for many pregnant and postpartum women.

Reduced health service capacity and the transition to remote and virtual care due to pandemic restrictions have been heavily criticised [ 8 , 88 ]. In many contexts, women had not received high quality maternity care during the pandemic and described overtly negative experiences [ 35 , 89 , 90 ]. Women were unable to access usual supports, had limited birth choices and reduced postpartum care which resulted in stress and anxiety. These are clearly widespread experiences, regardless of context, and highlights some of the structural weaknesses and vulnerabilities of maternity care systems. This was evident in the findings for pregnant and postpartum women of culturally and linguistically diverse backgrounds. The lack of culturally appropriate care, including access to interpretation services, doulas and being unable to have their support person present are known to impair maternal health and wellbeing [ 56 , 63 , 80 ]. These factors are key elements of respectful maternity care as they help provide information, enable women’s agency and ensure emotional and social support is available [ 91 , 92 ]. Health restrictions should not limit this service for women during times of unrest, as women and babies thrive in culturally respectful maternity services [ 93 ]. We note however that CALD women continue to be an under-represented group - only three of the 36 sampled studies reported evidence specifically for CALD groups [ 56 , 63 , 80 ]. The lack of diverse perspectives included in the evidence base makes it more difficult for culturally sensitive and community-responsive policies to be developed. Further research with women from diverse backgrounds are warranted to ensure they are not unduly disadvantaged in future pandemics [ 94 ].

A key finding was the reduced presence of partner and social support throughout the pregnancy and postpartum periods. Partner support and strong connections with extended support networks reduces stress and anxiety, and can be a positive influence on the woman and her experience [ 95 , 96 , 97 ]. In the trade-off between the risk of transmission and spread of disease, expectant fathers and partners were frequently left out [ 98 , 99 ]. Similarly, studies of families and partners of intensive care unit patients during the COVID-19 pandemic reported being physically and emotionally unable to support partners and families [ 100 , 101 ]. Close family members are essential to the recovery of patients upon discharge and partners are integral to a safe and positive pregnancy, intrapartum and postpartum experience for mothers. To ensure that maternity care services can adequately respond in the future, recommendations for some degree of flexibility for women given the long-term psychosocial impact that a negative experience would have on the woman and family unit has been sought [ 8 , 87 , 88 ].

Pregnant and postpartum women’s experiences were not universally negative. Another key finding in this review highlights the resilience and optimism that some women felt. Some women perceived this time as a “blessing in disguise” – referencing the ability to stay at home, having fewer disruptions to breastfeeding, and embracing newfound time as a family unit [ 64 , 66 , 71 ]. Coping strategies reported in this study are supported by other evidence of protective factors against stressors of the COVID-19 pandemic [ 102 , 103 , 104 ].

Maternity care services need to continue delivering care during public health emergencies. There is no possibility of delaying or postponing care; and women require care over an extended period of time. Enforced lockdowns limited movement and fear of contracting the virus in hospitals lead to delays in healthcare seeking (e.g. when there is reduced fetal movements). The pandemic altered the provision of services and women’s access to care and, as a result, some countries have reported changes to the incidences of stillbirth and preterm birth [ 105 , 106 , 107 ].

Understanding women’s experiences, their preferences and satisfaction with maternity care services are essential to a safe and positive pregnancy, labour and childbirth and postpartum period. Many maternity models of care such as woman-centred and midwifery-led care places the woman at the centre of care and her experience, focusing on woman’s health needs, expectations and aspirations [ 108 , 109 ]. These models have proven to return high levels of satisfaction and are beneficial to the psychological and physiological recovery of the woman [ 110 , 111 ]. The COVID-19 pandemic has disrupted these models of care for women who were pregnant and gave birth during the pandemic. Pressures on the maternity care system and service delivery did not facilitate the midwife-woman relationship, resulting in poorer clinical outcomes [ 112 ]. Supporting women throughout their perinatal period is essential so women and their babies are able to emerge from the experience feeling prepared, safe and satisfied [ 113 , 114 ].

Moving forward, as maternity care systems adapt to a post-pandemic structure, considerations need to be made to ensure maternity services can adequately respond to future health crises. Our QES has shown that the impacts of COVID-19 went far beyond the direct impacts on women who were infected with SARS-COV2. All women giving birth over the pandemic, especially in the first two years, were indirectly impacted and as a result experienced a lack of autonomy during their pregnancy and childbirth, barriers to accessing face-to-face care and loss of social supports. This highlights the need to consider women’s views and experiences in developing policies for future responses to pandemics or public health emergencies.

We recommend that policy makers and maternity care services should: 1) optimise care delivery to maintain face-to-face care when possible and facilitate the presence of chosen support people; 2) enhance communication channels between maternity care services and women to minimise misinformation, stress and anxiety; and 3) support social and mental wellbeing to ensure women have access to adequate social support and mental health services are well resourced.

Strengths and limitations

The rigorous and systematic methodology of this QES in selecting studies for inclusion allowed us to analyse experiences of a heterogenous cohort of pregnant and postpartum women during the COVID-19 pandemic. When we started the review, the abundance of published work of women’s experiences was overwhelming, therefore strict eligibility criteria were used to ensure that findings could be obtained and compared across studies. This study was therefore limited to experiences of women in high-income countries and cannot be generalised to low- and middle-income countries.

Studies were subject to a sampling framework to ensure that a diverse, yet data rich sample of studies contributed to the development of review findings. This had its own set of limitations as the sampling framework is not a validated tool and may be biased by the user’s own interpretation. Additionally, the search strategy was limited to the first two years of the pandemic. While it is possible research was published outside of this two-year period, we felt that it was unlikely that different experiences would be reported. An updated search (December 2022) was conducted to determine if any new themes emerged, however no new themes emerged and therefore did not warrant the addition of any new studies. Almost all studies that used interviews to collect qualitative data did so via remote methods. Telephones and video conferencing tools were popular methods to conduct interviews, adhering to social distancing guidelines. Whilst this increased accessibility for participants from diverse geographical locations, there may be concerns about the depth of data obtained and exclusion of participants that are unable to access these technologies. A further consideration is the limited number of studies exploring the experiences of women from diverse backgrounds. This prevented us from more critically examining what factors and circumstances shape women’s experiences and responses.

Women’s pregnancy and postpartum experience during the COVID-19 pandemic showcased similarities despite different contexts. This QES has collated the experiences of women from high income countries sharing insight into the challenges faced and resilience of pregnant and postpartum women. The COVID-19 pandemic has exacerbated many systemic shortfalls of the maternal and newborn health system – a system that is essential to the health and wellbeing of women and babies. The review findings have highlighted areas within this period where strategies to inform policy and practice could be optimised to allow for better access to care and support for women in their journey to motherhood. Future pandemic preparedness strategies need to maximise face-to-face care, optimise communication channels to combat misinformation and anxiety, include a flexible approach to public health restrictions for women and their families by allowing formal and informal support networks to be readily available and accessible, and to ensure maternal mental health is a priority.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files]. Additional information is available from the corresponding author on reasonable request.

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The primary author is funded by Deakin University Postgraduate Research Scholarship as a PhD Candidate. AB is supported by the Australian Government Research Training Program, CSEH is supported by the Australian National Health and Medical Research Council Leadership Investigator Grant, and JPV is supported by the Australian National Health and Medical Research Council Emerging Leadership Investigator Grant. The funding bodies had no role in the conceptualisation of the study design and data collection, data analysis, interpretation and writing of the manuscript.

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Tan, A., Blair, A., Homer, C.S. et al. Pregnant and postpartum women’s experiences of the indirect impacts of the COVID-19 pandemic in high-income countries: a qualitative evidence synthesis. BMC Pregnancy Childbirth 24 , 262 (2024). https://doi.org/10.1186/s12884-024-06439-6

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Choosing a Qualitative Research Approach

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Editor's Note: The online version of this article contains a list of further reading resources and the authors' professional information .

The Challenge

Educators often pose questions about qualitative research. For example, a program director might say: “I collect data from my residents about their learning experiences in a new longitudinal clinical rotation. If I want to know about their learning experiences, should I use qualitative methods? I have been told that there are many approaches from which to choose. Someone suggested that I use grounded theory, but how do I know this is the best approach? Are there others?”

What Is Known

Qualitative research is the systematic inquiry into social phenomena in natural settings. These phenomena can include, but are not limited to, how people experience aspects of their lives, how individuals and/or groups behave, how organizations function, and how interactions shape relationships. In qualitative research, the researcher is the main data collection instrument. The researcher examines why events occur, what happens, and what those events mean to the participants studied. 1 , 2

Qualitative research starts from a fundamentally different set of beliefs—or paradigms—than those that underpin quantitative research. Quantitative research is based on positivist beliefs that there is a singular reality that can be discovered with the appropriate experimental methods. Post-positivist researchers agree with the positivist paradigm, but believe that environmental and individual differences, such as the learning culture or the learners' capacity to learn, influence this reality, and that these differences are important. Constructivist researchers believe that there is no single reality, but that the researcher elicits participants' views of reality. 3 Qualitative research generally draws on post-positivist or constructivist beliefs.

Qualitative scholars develop their work from these beliefs—usually post-positivist or constructivist—using different approaches to conduct their research. In this Rip Out, we describe 3 different qualitative research approaches commonly used in medical education: grounded theory, ethnography, and phenomenology. Each acts as a pivotal frame that shapes the research question(s), the method(s) of data collection, and how data are analyzed. 4 , 5

Choosing a Qualitative Approach

Before engaging in any qualitative study, consider how your views about what is possible to study will affect your approach. Then select an appropriate approach within which to work. Alignment between the belief system underpinning the research approach, the research question, and the research approach itself is a prerequisite for rigorous qualitative research. To enhance the understanding of how different approaches frame qualitative research, we use this introductory challenge as an illustrative example.

The clinic rotation in a program director's training program was recently redesigned as a longitudinal clinical experience. Resident satisfaction with this rotation improved significantly following implementation of the new longitudinal experience. The program director wants to understand how the changes made in the clinic rotation translated into changes in learning experiences for the residents.

Qualitative research can support this program director's efforts. Qualitative research focuses on the events that transpire and on outcomes of those events from the perspectives of those involved. In this case, the program director can use qualitative research to understand the impact of the new clinic rotation on the learning experiences of residents. The next step is to decide which approach to use as a frame for the study.

The table lists the purpose of 3 commonly used approaches to frame qualitative research. For each frame, we provide an example of a research question that could direct the study and delineate what outcomes might be gained by using that particular approach.

Methodology Overview

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How You Can Start TODAY

  • 1 Examine the foundations of the existing literature: As part of the literature review, make note of what is known about the topic and which approaches have been used in prior studies. A decision should be made to determine the extent to which the new study is exploratory and the extent to which findings will advance what is already known about the topic.
  • 2 Find a qualitatively skilled collaborator: If you are interested in doing qualitative research, you should consult with a qualitative expert. Be prepared to talk to the qualitative scholar about what you would like to study and why . Furthermore, be ready to describe the literature to date on the topic (remember, you are asking for this person's expertise regarding qualitative approaches—he or she won't necessarily have content expertise). Qualitative research must be designed and conducted with rigor (rigor will be discussed in Rip Out No. 8 of this series). Input from a qualitative expert will ensure that rigor is employed from the study's inception.
  • 3 Consider the approach: With a literature review completed and a qualitatively skilled collaborator secured, it is time to decide which approach would be best suited to answering the research question. Questions to consider when weighing approaches might include the following:
  • • Will my findings contribute to the creation of a theoretical model to better understand the area of study? ( grounded theory )
  • • Will I need to spend an extended amount of time trying to understand the culture and process of a particular group of learners in their natural context? ( ethnography )
  • • Is there a particular phenomenon I want to better understand/describe? ( phenomenology )

What You Can Do LONG TERM

  • 1 Develop your qualitative research knowledge and skills : A basic qualitative research textbook is a valuable investment to learn about qualitative research (further reading is provided as online supplemental material). A novice qualitative researcher will also benefit from participating in a massive online open course or a mini-course (often offered by professional organizations or conferences) that provides an introduction to qualitative research. Most of all, collaborating with a qualitative researcher can provide the support necessary to design, execute, and report on the study.
  • 2 Undertake a pilot study: After learning about qualitative methodology, the next best way to gain expertise in qualitative research is to try it in a small scale pilot study with the support of a qualitative expert. Such application provides an appreciation for the thought processes that go into designing a study, analyzing the data, and reporting on the findings. Alternatively, if you have the opportunity to work on a study led by a qualitative expert, take it! The experience will provide invaluable opportunities for learning how to engage in qualitative research.

Supplementary Material

The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the Uniformed Services University of the Health Sciences, the Department of the Navy, the Department of Defense, or the US government.

References and Resources for Further Reading

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  • Published: 09 April 2024

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

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

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

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Metrics details

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

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

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

Conclusions

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

Trial registration

Prospero 2021: CRD42021253736.

Peer Review reports

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

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

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

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

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

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

Protocol and registration

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

Information sources, search strategy, and eligibility criteria

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

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

Terminology

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

Selection process, data-collection process, and data items

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

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

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

Risk of bias assessment

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

Synthesis methods

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

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

Study selection and characteristics

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

figure 1

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

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

Quality assessment

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

Design and implementation of involvement

Phases and methods of involvement.

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

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

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

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

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

People involved

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

Roles and level of involvement

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

Models for involvement in research

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

Barriers, facilitators, and good practices in research phases

Preparation phase.

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

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

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

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

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

Execution phase

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

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

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

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

Translation

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

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

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

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

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

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

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

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

Strengths and limitations

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

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

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

Implications for future research

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

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

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

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

Availability of data and materials

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

Abbreviations

Critical Appraisal Skills Programme

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

  • Long-term care

Persons living with dementia

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Acknowledgements

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

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

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

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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:

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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.

COMMENTS

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