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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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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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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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From John W. Creswell \(2016\). 30 Essential Skills for the Qualitative Researcher \ . Thousand Oaks, CA: Sage.

Qualitative Studies

Qualitative Research Studies: Introduction

Introduction

Research design decides how research materials will be collected. One or more research methods, for example -- experiment, survey, interview, etc. -- are chosen depending on the research objectives. In some research contexts, a survey may be suitable. In other instances, interviews or case studies or observation might be more appropriate. Research design actually provides insights into “how” to conduct research using a particular research methodology. Basically, every researcher has a list of research questions that need to be assessed that can be done with research design.

So research design can be defined as a framework of research methods and techniques applied by a researcher to incorporate different elements & components of research in a systematic manner. Most significantly, research design provides insights into how to Conduct Research using a particular research methodology. 

Qualitative Methods try to gather detailed, rich data allowing for an in-depth understanding of research phenomena.  Seeks the “why” rather than the “how.”

Qualitative Data Collection

Data obtained using qualitative data collection methods can be used to find new ideas, opportunities, and problems, test their value and accuracy, formulate predictions, explore a certain field in more detail, and explain the numbers obtained using quantitative data collection techniques.

Since qualitative data collection methods usually do not involve numbers and mathematical calculations, qualitative data is often seen as more subjective, but at the same time, it allows a greater depth of understanding.

Aspers, P., Corte, U. What is Qualitative in Qualitative Research .  Qual Sociol   42 , 139–160 (2019). 

Types of Qualitative Studies

Qualitative study methods are semi-structured or unstructured, usually involve small sample sizes and lack strong scientific controls.

Qualitative Study Methods

Qualitative study methods employ many of the same methods as quantitative data collection, except that instead of structured or closed, they are semi- or unstructured and open-ended.  Some of the most common qualitative  study techniques include open-ended surveys and questionnaires, interviews, focus groups, observation, case studies, and so on.

There is generally five types of qualitative data collection:

• Ethnography research: Involves semi-structure or unstructured interviews with open-ended questions; participant and non-participant observation; collected materials including documents, books, papers, audio, images, videos etc.
• Phenomenological research : I n-depth interviewing which involves conducting intensive individual interviews with a small number of respondents to explore their perspectives on a particular idea, program, or situation.  The participant interviews may be structured, semi-structured or unstructured; it also includes reflective journals; written oral self-reports; and participant’s aesthetic expressions.
• Grounded theory research: Data collection methods often include in-depth interviews using open-ended questions. Questions can be adjusted as theory emerges. Participant observation and focus groups may also be used as well as collecting and studying …  including documents, books, papers, audio, images, artifacts; videos etc. used by participants in their daily lives.
• Narrative: Participant or non-participant interview, aesthetic expressions; one’s own and other’s observation; storytelling; letter writing; autobiographic writing; collected materials …..; personal information such as values. Narrative analysis focuses on different elements to make diverse but equally substantial and meaningful interpretations and conclusions. It is a genre of analytical frames used by researchers to interpret information with the context of research shared by all in daily life. 
• Case study : Focus groups; semi-structured or unstructured interviews with open-ended questions; participant and non-participant observation; collected materials

Nayar, S., & Stanley, D. M. (Eds.). (2015).  Qualitative research methodologies for occupational science and therapy . London: Routledge.

Frank, G., & Polkinghorne, D. (2010). Qualitative Research in Occupational Therapy: From the First to the Second Generation . OTJR (Thorofare, N.J.), 30(2), 51-57.

How To Search for Qualitative Studies

Databases categorize their records using subject terms or controlled vocabularies. These Subject Headings vary for each database.

Medline/PubMed : MeSH Subject Headings

• Qualitative Research : Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means.  Includes Document Analysis & Hermaneutics.
• Interviews as Topic:  Works about conversations with an individual or individuals held in order to obtain information about their background and other personal biographical data, their attitudes and opinions, etc. It includes works about school admission or job interviews.
• Focus Groups : A method of data collection and a QUALITATIVE RESEARCH tool in which a small group of individuals are brought together and allowed to interact in a discussion of their opinions about topics, issues, or questions.
• Grounded Theory : The generation of theories from analysis of empirical data.
• Nursing Methodology Research :  Research carried out by nurses concerning techniques and methods to implement projects and to document information, including methods of interviewing patients, collecting data, and forming inferences. The concept includes exploration of methodological issues such as human subjectivity and human experience.
• Anecdotes As Topic : Works about brief accounts or narratives of an incident or event.
• Narration : The act, process, or an instance of narrating, i.e., telling a story. In the context of MEDICINE or ETHICS, narration includes relating the particular and the personal in the life story of an individual.
• Personal Narratives As Topic:  Works about accounts of individual experience in relation to a particular field or of participation in related activities.
• Observational Studies As Topic : Works about clinical studies in which participants may receive diagnostic, therapeutic, or other types of interventions, but the investigator does not assign participants to specific interventions (as in an interventional study).

CINAHL (Cumulative Index to Nursing & Allied Health) : CINAHL Subject Headings 

• Action Research: Research in which problem definition, data collection, factor formulation, planned change, data analysis, and problem redefinition continue in an ongoing cycle.
• Ethnographic Research: Research which seeks to uncover the symbols and categories that members of a given culture use to interpret their world.
• Ethnological Research: Comparison and contrasting of cultures and societies as a whole.
• Ethnonursing Research: The study and analysis of a designated culture's viewpoints, beliefs, and practices about nursing care behavior.
• Grounded Theory: A qualitative method developed by Glaser and Strauss to unite theory construction and data analysis.
• Naturalist Inquiry: The use of the natural setting in research to enable understanding the whole rather than only part of the reality being studied.
• Phenomenological Research: Research designed to discover and understand the meaning of human life experiences.
• Focus Groups : Small groups of individuals brought together to discuss their opinions regarding specific issues, topics, and questions.
• Interviews:  Face-to-face or telephone meetings with subjects for the purpose of gathering information.
• Narratives : Descriptions or interpretations of events, usually in an informal manner. Often used as a data collection method for research. Do not confuse with STORYTELLING, a form of literature or telling a real or imagined story to an audience or listener.
• Descriptive Research : Research studies that have as their main objective the accurate portrayal of the characteristics of persons, situations, or groups, and the frequency with which certain phenomena occur.
• Observational Methods:  Methods of data collection in which the investigator witnesses and records behaviors of interest.
• Projective Techniques : A variety of methods for measuring by providing respondents with unstructured stimuli to which to respond.

In CINHAL, on the Advanced Search page, there are Search Options.  Scroll down to the Clinical Queries drop down box and choose to limit the search to  Qualitative-High Sensitivity; Qualitative-High Specificity ; Qualitative-Best Balance . High Sensitivity is the broadest search, to include ALL relevant material, but may also include less relevant materials. High Specificity is the most targeted search to include only the most relevant result set, but may miss some relevant materials. Best Balance retrieves the best balance between Sensitivity and Specificity.

PsycINFO: Subject Headings

• Grounded Theory
• Narrative Analysis
• Thematic Analysis : A qualitative research strategy for identifying, analyzing, and reporting identifiable patterns or clusters within data.
• Focus Grou p
• Focus Group Interview
• Semi-Structured Interview
• Interpretive Phenomenological Analysis : A systematic qualitative approach in which a researcher explores how individual's make sense of particular experiences, events, and states, primarily through the analysis of data from structured and semi-structured interviews.
• Qualitative Measures : Measures or tests employing qualitative methods and/or data, such as narratives, interviews, and focus groups.

As with CINAHL, you can limit to Methodology.  Click on Additional Limits, scroll down to "Methodology" and choose "Qualitative Study", "Focus Groups" or "Interview".

NOTE!: Be aware of  Inconsistent indexing. The above subject headings as not always indexed (i.e. added to articles) for qualitative research nor is the publication type/methodology.  So, to successfully find qualitative articles you also need to add keywords to your search strategy or if you are getting too few results, leave off the Clinical Queries or Methodology filters.

Free text keywords

Use selective free text keywords to search in Titles, Abstracts or Keywords of records held in the databases to identify Qualitative Research.  Examples:

When searching, do a combination of subject terms and keywords depending on the type of qualitative study you are looking for:

Qualitative Research [MeSH] OR (qualitative AND (research OR study OR method))

(Grounded Theory[MeSH] OR "grounded theory")

then combine it with your topic of interest

post-traumatic stress disorder OR PTSD

brain injury, OR BTI OR "traumatic, brain injury"

How to Critically Analyze Qualitative Studies

 A critical analysis of a qualitative study considers the “fit” of the research question with the qualitative method used in the study. There are many checklists available for the assessment of qualitative research studies.  Here are a few:

• The Johanna Briggs Institute: The Joanna Briggs Institute Critical Appraisal tools  for use in JBI Systematic Reviews Checklist for  Qualitative Research  
• CASP:  CASP Checklist: 10 questions to help you make sense of a Qualitative research
• McMaster University:  Guidelines for Critical Review Form:  Qualitative Studies (Version 2.0) © Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., & Westmorland, M., 2007  

NOTE:  When using these checklists, be sure to use them critically and with careful consideration of the research context.  In other words, use the checklists as the beginning point in assessing the article and then re-assess the article based on whether the findings can be applied in your setting/population/disease/condition.

Additional Resources

Moorley, C., & Cathala, X. (2019). How to appraise qualitative research .  Evidence-Based Nursing ,  22 (1), 10-13.    ( open access)

Stenfors, T., Kajamaa, A. and Bennett, D. (2020), How to … assess the quality of qualitative research . Clin Teach, 17: 596-599.

Greenhalgh, T., & Taylor, R. (1997). How to read a paper: Papers that go beyond numbers (qualitative research).   BMj ,  315 (7110), 740-743. 

Jeanfreau, S. G., & Jack, L., Jr (2010). Appraising qualitative research in health education: guidelines for public health educators.   Health promotion practice ,  11 (5), 612–617. 

Research Series - Critical appraisal of qualitative research when reading papers Jul 22, 2022 Virtual Tutor; Research Series (Elsevier Health Education) YouTube Video 10:04 min [ This episode Professor Dall'Ora will be looking at qualitative research in more detail. In particular how to critically appraise qualitative studies.]

Hanes K. Chapter 4: Critical appraisal of qualitative research. In: Noyes J, Booth A, Hannes K, Harden A, Harris J, Lewin S, Lockwood C (editors), Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1 (updated August 2011). Cochrane Collaboration Qualitative Methods Group, 2011. 

David Tod, Andrew Booth & Brett Smith (2022)  Critical appraisal ,  International Review of Sport and Exercise Psychology, 15:1, 52-72  (open access)

Validity & Reliability in Qualitative Studies

Validity & Reliability

Validity in qualitative research means the “appropriateness” of the tools, processes, and data -- are the tools, processes and data measuring what it is intended to measure to answer the research question?  Assessing for validity is looking to see if the research question is "valid" for the desired outcome -- whether the choice of of the methodology used was appropriate for answering the research question, was the study design valid for the methodology, were the appropriate sampling and data analysis used and finally, were the results and conclusions valid for the sample and within the context of the research question. 

In contrast, reliability concerns the degree of consistency in the results if the study, using the same methodology, can be repeated over and over.

The Basics of Validity and Reliability in Research by Joe O'Brian & Anders Orn, Research Collective.com

Brewer, M., & Crano, W. (2014). Research Design and Issues of Validity. In H. Reis & C. Judd (Eds.),  Handbook of Research Methods in Social and Personality Psychology  (pp. 11-26). Cambridge: Cambridge University Press. 

Golafshani, N. (2003). Understanding Reliability and Validity in Qualitative Research.   The Qualitative Report ,  8 (4), 597-606. 

Cypress, Brigitte S. EdD, RN, CCRN. Rigor or Reliability and Validity in Qualitative Research: Perspectives, Strategies, Reconceptualization, and Recommendations . Dimensions of Critical Care Nursing 36(4):p 253-263, 7/8 2017. 

Leung L. (2015). Validity, reliability, and generalizability in qualitative research .  Journal of family medicine and primary care ,  4 (3), 324–327. 

Understanding Reliability and Validity . Writing@CSU

Rosumeck, S., Wagner, M., Wallraf, S., & Euler, U. (2020). A validation study revealed differences in design and performance of search filters for qualitative research in PsycINFO and CINAHL.   Journal of clinical epidemiology ,  128 , 101–108. 

Wagner, M., Rosumeck, S., Küffmeier, C., Döring, K., & Euler, U. (2020). A validation study revealed differences in design and performance of MEDLINE search filters for qualitative research .  Journal of clinical epidemiology ,  120 , 17–24.

Franzel, B., Schwiegershausen, M., Heusser, P.  et al.   How to locate and appraise qualitative research in complementary and alternative medicine.   BMC Complement Altern Med   13 , 125 (2013). 

Finfgeld-Connett, D. and Johnson, E.D. (2013), Literature search strategies for conducting knowledge-building and theory-generating qualitative systematic reviews. Journal of Advanced Nursing, 69: 194-204. 

Rogers, M, Bethel, A, Abbott, R.  Locating qualitative studies in dementia on MEDLINE, EMBASE, CINAHL, and PsycINFO: A comparison of search strategies.   Res Syn Meth . 2018; 9: 579– 586. 

Booth, A. Searching for qualitative research for inclusion in systematic reviews: a structured methodological review .  Syst Rev   5 , 74 (2016). 

Noyes, J., Hannes, K., Booth, A., Harris, J., Harden, A., Popay, J., ... & Pantoja, T. (2015). Qualitative research and Cochrane reviews .

Citing Sources

Citations are brief notations in the body of a research paper that point to a source in the bibliography or references cited section.

If your paper quotes, paraphrases, summarizes the work of someone else, you need to use citations.

Citation style guides such as APA, Chicago and MLA provide detailed instructions on how citations and bibliographies should be formatted.

Health Sciences Research Toolkit

Resources, tips, and guidelines to help you through the research process., finding information.

Library Research Checklist Helpful hints for starting a library research project.

Search Strategy Checklist and Tips Helpful tips on how to develop a literature search strategy.

Boolean Operators: A Cheat Sheet Boolean logic (named after mathematician George Boole) is a system of logic to designed to yield optimal search results. The Boolean operators, AND, OR, and NOT, help you construct a logical search. Boolean operators act on sets -- groups of records containing a particular word or concept.

Literature Searching Overview and tips on how to conduct a literature search.

Health Statistics and Data Sources Health related statistics and data sources are increasingly available on the Internet. They can be found already neatly packaged, or as raw data sets. The most reliable data comes from governmental sources or health-care professional organizations.

Evaluating Information

Primary, Secondary and Tertiary Sources in the Health Sciences Understand what are considered primary, secondary and tertiary sources.

Scholarly vs Popular Journals/Magazines How to determine what are scholarly journals vs trade or popular magazines.

Identifying Peer-Reviewed Journals A “peer-reviewed” or “refereed” journal is one in which the articles it contains have been examined by people with credentials in the article’s field of study before it is published.

Evaluating Web  Resources When searching for information on the Internet, it is important to be aware of the quality of the information being presented to you. Keep in mind that anyone can host a web site. To be sure that the information you are looking at is credible and of value.

Conducting Research Through An Anti-Racism Lens This guide is for students, staff, and faculty who are incorporating an anti-racist lens at all stages of the research life cycle.

Understanding Research Study Designs Covers case studies, randomized control trials, systematic reviews and meta-analysis.

Qualitative Studies Overview of what is a qualitative study and how to recognize, find and critically appraise.

Writing and Publishing

Citing Sources Citations are brief notations in the body of a research paper that point to a source in the bibliography or references cited section.

Structure of a Research Paper Reports of research studies usually follow the IMRAD format. IMRAD (Introduction, Methods, Results, [and] Discussion) is a mnemonic for the major components of a scientific paper. These elements are included in the overall structure of a research paper.

Top Reasons for Non-Acceptance of Scientific Articles Avoid these mistakes when preparing an article for publication.

Annotated Bibliographies Guide on how to create an annotated bibliography.

Writing guides, Style Manuals and the Publication Process in the Biological and Health Sciences Style manuals, citation guides as well as information on public access policies, copyright and plagiarism.

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Home » Qualitative Research – Methods, Analysis Types and Guide

Qualitative Research – Methods, Analysis Types and Guide

Table of Contents

Qualitative Research

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

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

Qualitative Research Methods

Qualitative Research Methods are as follows:

One-to-One Interview

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

Focus Groups

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

Ethnographic Studies

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

Text Analysis

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

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

Process of Observation

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

Record Keeping

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

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

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

Qualitative Research Analysis Methods

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

Thematic Analysis

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

Content Analysis

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

Discourse Analysis

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

Grounded Theory Analysis

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

Narrative Analysis

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

Phenomenological Analysis

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

Comparative Analysis

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

Applications of Qualitative Research

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

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

How to Conduct Qualitative Research

Here are some general steps for conducting qualitative research:

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

Examples of Qualitative Research

Here are some real-time examples of qualitative research:

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

Purpose of Qualitative Research

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

Qualitative research can serve multiple purposes, including:

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

When to use Qualitative Research

Here are some situations where qualitative research may be appropriate:

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

Characteristics of Qualitative Research

Qualitative research is characterized by several key features, including:

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

Advantages of Qualitative Research

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

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

Limitations of Qualitative Research

Qualitative research also has some limitations, including:

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

Also see Research Methods

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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Qualitative Research Objectives Samples, Ideas and Examples

February 27, 2020

Dr Jana Martiskova

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Qualitative Research Objectives

Table of Contents

Qualitative Research Objectives Samples That’ll Make Thesis Writing Easy Breezy for You

Should you conduct qualitative research or quantitative research – that is the question, are you a student who doesn’t know which of these two research types should you be conducting for your thesis or dissertation.

If you are a student of sociology, psychology, or marketing, then you should most probably be using qualitative research methods as it gives you better insight for your study.

The objectives of qualitative research are to focus more on target audiences’ range of behavior and perceptions that drive it rather than facts and statistics that govern quantitative research.

Quantitative research objectives try to determine a relationship between a dependent and an independent variable whereas qualitative objectives study complex behavior that is difficult, but not impossible, to capture with statistics.

Because of that, the scope of qualitative research aims and objectives are far wider than quantitative and gives the researcher more freedom than its peer.

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Qualitative research has originated from sociology and psychology , two fields of science that study human behavior, preferences, and the decision-making process.

But there are still several different approaches in the qualitative research field. Which approach should you use for your study and how will you develop their research objectives the core and central point of any research study?

Below mentioned are a few sample qualitative research objectives for your easy understanding and application:

Ethnographic Research

This type of research focuses on the study of human societies and how different people act in different cultures.

Sample Objective:

• Determine the impact of tribal environment on an individual’s personality
• To identify the change in personality if an individual is shifted from his comfort environment
• Observing a group of children playing.
• Observing employees in a corporate office.
• Observing medical personnel in a high-volume hospital.

Ethical Inquiry research

This type of study tries to understand the origin of rights, obligations, and how people develop the sense of right and wrong based on their environment.

• To identify the factors that motivate people to commit crimes in society.
• To determine the ethical background of the students who are known to be ‘school bullies’.

Foundational Research:

This type of research tries to understand how and why the process of learning takes place amongst people of different ages.

• To determine the scale of time it takes an average child to learn a new skill
• To determine the scale of time it takes an individual with the inability to learn a new skill
• A critical analysis of product placement as an effective marketing strategy.
• An investigation into the main elements of brands and branding.
• A study of factors impacting each stage of product life cycle.

Historical Research:

It is the study of a person’s current social attitude and community structure based on his past events and experiences.

• To determine the success rate of a couple’s marriage based on their past relationships
• To understand the level of self-confidence in an individual based on his schooling experiences.

Phenomenology research:

This type of research is known as identifying an experience from an individual’s point of view. It tries to identify how different individuals perceive different experiences.

• To determine the level of satisfaction of a hotel customer
• To understand the unique experience of a mystery shopper who visits a bank branch

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• Chapter 1: Home
• Narrowing Your Topic
• Problem Statement

Purpose Statement Overview

Best practices for writing your purpose statement, writing your purpose statement, sample purpose statements.

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The purpose statement succinctly explains (on no more than 1 page) the objectives of the research study. These objectives must directly address the problem and help close the stated gap. Expressed as a formula:

Good purpose statements:

• Flow from the problem statement and actually address the proposed problem
• Are concise and clear
• Answer the question ‘Why are you doing this research?’
• Match the methodology (similar to research questions)
• Have a ‘hook’ to get the reader’s attention
• Set the stage by clearly stating, “The purpose of this (qualitative or quantitative) study is to ...

In PhD studies, the purpose usually involves applying a theory to solve the problem. In other words, the purpose tells the reader what the goal of the study is, and what your study will accomplish, through which theoretical lens. The purpose statement also includes brief information about direction, scope, and where the data will come from.

A problem and gap in combination can lead to different research objectives, and hence, different purpose statements. In the example from above where the problem was severe underrepresentation of female CEOs in Fortune 500 companies and the identified gap related to lack of research of male-dominated boards; one purpose might be to explore implicit biases in male-dominated boards through the lens of feminist theory. Another purpose may be to determine how board members rated female and male candidates on scales of competency, professionalism, and experience to predict which candidate will be selected for the CEO position. The first purpose may involve a qualitative ethnographic study in which the researcher observes board meetings and hiring interviews; the second may involve a quantitative regression analysis. The outcomes will be very different, so it’s important that you find out exactly how you want to address a problem and help close a gap!

The purpose of the study must not only align with the problem and address a gap; it must also align with the chosen research method. In fact, the DP/DM template requires you to name the  research method at the very beginning of the purpose statement. The research verb must match the chosen method. In general, quantitative studies involve “closed-ended” research verbs such as determine , measure , correlate , explain , compare , validate , identify , or examine ; whereas qualitative studies involve “open-ended” research verbs such as explore , understand , narrate , articulate [meanings], discover , or develop .

A qualitative purpose statement following the color-coded problem statement (assumed here to be low well-being among financial sector employees) + gap (lack of research on followers of mid-level managers), might start like this:

In response to declining levels of employee well-being, the purpose of the qualitative phenomenology was to explore and understand the lived experiences related to the well-being of the followers of novice mid-level managers in the financial services industry. The levels of follower well-being have been shown to correlate to employee morale, turnover intention, and customer orientation (Eren et al., 2013). A combined framework of Leader-Member Exchange (LMX) Theory and the employee well-being concept informed the research questions and supported the inquiry, analysis, and interpretation of the experiences of followers of novice managers in the financial services industry.

A quantitative purpose statement for the same problem and gap might start like this:

In response to declining levels of employee well-being, the purpose of the quantitative correlational study was to determine which leadership factors predict employee well-being of the followers of novice mid-level managers in the financial services industry. Leadership factors were measured by the Leader-Member Exchange (LMX) assessment framework  by Mantlekow (2015), and employee well-being was conceptualized as a compound variable consisting of self-reported turnover-intent and psychological test scores from the Mental Health Survey (MHS) developed by Johns Hopkins University researchers.

Both of these purpose statements reflect viable research strategies and both align with the problem and gap so it’s up to the researcher to design a study in a manner that reflects personal preferences and desired study outcomes. Note that the quantitative research purpose incorporates operationalized concepts  or variables ; that reflect the way the researcher intends to measure the key concepts under study; whereas the qualitative purpose statement isn’t about translating the concepts under study as variables but instead aim to explore and understand the core research phenomenon.  

Always keep in mind that the dissertation process is iterative, and your writing, over time, will be refined as clarity is gradually achieved. Most of the time, greater clarity for the purpose statement and other components of the Dissertation is the result of a growing understanding of the literature in the field. As you increasingly master the literature you will also increasingly clarify the purpose of your study.

The purpose statement should flow directly from the problem statement. There should be clear and obvious alignment between the two and that alignment will get tighter and more pronounced as your work progresses.

The purpose statement should specifically address the reason for conducting the study, with emphasis on the word specifically. There should not be any doubt in your readers’ minds as to the purpose of your study. To achieve this level of clarity you will need to also insure there is no doubt in your mind as to the purpose of your study.

Many researchers benefit from stopping your work during the research process when insight strikes you and write about it while it is still fresh in your mind. This can help you clarify all aspects of a dissertation, including clarifying its purpose.

Your Chair and your committee members can help you to clarify your study’s purpose so carefully attend to any feedback they offer.

The purpose statement should reflect the research questions and vice versa. The chain of alignment that began with the research problem description and continues on to the research purpose, research questions, and methodology must be respected at all times during dissertation development. You are to succinctly describe the overarching goal of the study that reflects the research questions. Each research question narrows and focuses the purpose statement. Conversely, the purpose statement encompasses all of the research questions.

Identify in the purpose statement the research method as quantitative, qualitative or mixed (i.e., “The purpose of this [qualitative/quantitative/mixed] study is to ...)

Avoid the use of the phrase “research study” since the two words together are redundant.

Follow the initial declaration of purpose with a brief overview of how, with what instruments/data, with whom and where (as applicable) the study will be conducted. Identify variables/constructs and/or phenomenon/concept/idea. Since this section is to be a concise paragraph, emphasis must be placed on the word brief. However, adding these details will give your readers a very clear picture of the purpose of your research.

Developing the purpose section of your dissertation is usually not achieved in a single flash of insight. The process involves a great deal of reading to find out what other scholars have done to address the research topic and problem you have identified. The purpose section of your dissertation could well be the most important paragraph you write during your academic career, and every word should be carefully selected. Think of it as the DNA of your dissertation. Everything else you write should emerge directly and clearly from your purpose statement. In turn, your purpose statement should emerge directly and clearly from your research problem description. It is good practice to print out your problem statement and purpose statement and keep them in front of you as you work on each part of your dissertation in order to insure alignment.

It is helpful to collect several dissertations similar to the one you envision creating. Extract the problem descriptions and purpose statements of other dissertation authors and compare them in order to sharpen your thinking about your own work.  Comparing how other dissertation authors have handled the many challenges you are facing can be an invaluable exercise. Keep in mind that individual universities use their own tailored protocols for presenting key components of the dissertation so your review of these purpose statements should focus on content rather than form.

Once your purpose statement is set it must be consistently presented throughout the dissertation. This may require some recursive editing because the way you articulate your purpose may evolve as you work on various aspects of your dissertation. Whenever you make an adjustment to your purpose statement you should carefully follow up on the editing and conceptual ramifications throughout the entire document.

In establishing your purpose you should NOT advocate for a particular outcome. Research should be done to answer questions not prove a point. As a researcher, you are to inquire with an open mind, and even when you come to the work with clear assumptions, your job is to prove the validity of the conclusions reached. For example, you would not say the purpose of your research project is to demonstrate that there is a relationship between two variables. Such a statement presupposes you know the answer before your research is conducted and promotes or supports (advocates on behalf of) a particular outcome. A more appropriate purpose statement would be to examine or explore the relationship between two variables.

Your purpose statement should not imply that you are going to prove something. You may be surprised to learn that we cannot prove anything in scholarly research for two reasons. First, in quantitative analyses, statistical tests calculate the probability that something is true rather than establishing it as true. Second, in qualitative research, the study can only purport to describe what is occurring from the perspective of the participants. Whether or not the phenomenon they are describing is true in a larger context is not knowable. We cannot observe the phenomenon in all settings and in all circumstances.

It is important to distinguish in your mind the differences between the Problem Statement and Purpose Statement.

The Problem Statement is why I am doing the research

The Purpose Statement is what type of research I am doing to fit or address the problem

The Purpose Statement includes:

• Method of Study
• Specific Population

Remember, as you are contemplating what to include in your purpose statement and then when you are writing it, the purpose statement is a concise paragraph that describes the intent of the study, and it should flow directly from the problem statement.  It should specifically address the reason for conducting the study, and reflect the research questions.  Further, it should identify the research method as qualitative, quantitative, or mixed.  Then provide a brief overview of how the study will be conducted, with what instruments/data collection methods, and with whom (subjects) and where (as applicable). Finally, you should identify variables/constructs and/or phenomenon/concept/idea.

Qualitative Purpose Statement

Creswell (2002) suggested for writing purpose statements in qualitative research include using deliberate phrasing to alert the reader to the purpose statement. Verbs that indicate what will take place in the research and the use of non-directional language that do not suggest an outcome are key. A purpose statement should focus on a single idea or concept, with a broad definition of the idea or concept. How the concept was investigated should also be included, as well as participants in the study and locations for the research to give the reader a sense of with whom and where the study took place. 

Creswell (2003) advised the following script for purpose statements in qualitative research:

“The purpose of this qualitative_________________ (strategy of inquiry, such as ethnography, case study, or other type) study is (was? will be?) to ________________ (understand? describe? develop? discover?) the _________________(central phenomenon being studied) for ______________ (the participants, such as the individual, groups, organization) at __________(research site). At this stage in the research, the __________ (central phenomenon being studied) will be generally defined as ___________________ (provide a general definition)” (pg. 90).

Quantitative Purpose Statement

Creswell (2003) offers vast differences between the purpose statements written for qualitative research and those written for quantitative research, particularly with respect to language and the inclusion of variables. The comparison of variables is often a focus of quantitative research, with the variables distinguishable by either the temporal order or how they are measured. As with qualitative research purpose statements, Creswell (2003) recommends the use of deliberate language to alert the reader to the purpose of the study, but quantitative purpose statements also include the theory or conceptual framework guiding the study and the variables that are being studied and how they are related. 

Creswell (2003) suggests the following script for drafting purpose statements in quantitative research:

“The purpose of this _____________________ (experiment? survey?) study is (was? will be?) to test the theory of _________________that _________________ (compares? relates?) the ___________(independent variable) to _________________________(dependent variable), controlling for _______________________ (control variables) for ___________________ (participants) at _________________________ (the research site). The independent variable(s) _____________________ will be generally defined as _______________________ (provide a general definition). The dependent variable(s) will be generally defined as _____________________ (provide a general definition), and the control and intervening variables(s), _________________ (identify the control and intervening variables) will be statistically controlled in this study” (pg. 97).

• The purpose of this qualitative study was to determine how participation in service-learning in an alternative school impacted students academically, civically, and personally.  There is ample evidence demonstrating the failure of schools for students at-risk; however, there is still a need to demonstrate why these students are successful in non-traditional educational programs like the service-learning model used at TDS.  This study was unique in that it examined one alternative school’s approach to service-learning in a setting where students not only serve, but faculty serve as volunteer teachers.  The use of a constructivist approach in service-learning in an alternative school setting was examined in an effort to determine whether service-learning participation contributes positively to academic, personal, and civic gain for students, and to examine student and teacher views regarding the overall outcomes of service-learning.  This study was completed using an ethnographic approach that included observations, content analysis, and interviews with teachers at The David School.
• The purpose of this quantitative non-experimental cross-sectional linear multiple regression design was to investigate the relationship among early childhood teachers’ self-reported assessment of multicultural awareness as measured by responses from the Teacher Multicultural Attitude Survey (TMAS) and supervisors’ observed assessment of teachers’ multicultural competency skills as measured by the Multicultural Teaching Competency Scale (MTCS) survey. Demographic data such as number of multicultural training hours, years teaching in Dubai, curriculum program at current school, and age were also examined and their relationship to multicultural teaching competency. The study took place in the emirate of Dubai where there were 14,333 expatriate teachers employed in private schools (KHDA, 2013b).
• The purpose of this quantitative, non-experimental study is to examine the degree to which stages of change, gender, acculturation level and trauma types predicts the reluctance of Arab refugees, aged 18 and over, in the Dearborn, MI area, to seek professional help for their mental health needs. This study will utilize four instruments to measure these variables: University of Rhode Island Change Assessment (URICA: DiClemente & Hughes, 1990); Cumulative Trauma Scale (Kira, 2012); Acculturation Rating Scale for Arabic Americans-II Arabic and English (ARSAA-IIA, ARSAA-IIE: Jadalla & Lee, 2013), and a demographic survey. This study will examine 1) the relationship between stages of change, gender, acculturation levels, and trauma types and Arab refugees’ help-seeking behavior, 2) the degree to which any of these variables can predict Arab refugee help-seeking behavior.  Additionally, the outcome of this study could provide researchers and clinicians with a stage-based model, TTM, for measuring Arab refugees’ help-seeking behavior and lay a foundation for how TTM can help target the clinical needs of Arab refugees. Lastly, this attempt to apply the TTM model to Arab refugees’ condition could lay the foundation for future research to investigate the application of TTM to clinical work among refugee populations.
• The purpose of this qualitative, phenomenological study is to describe the lived experiences of LLM for 10 EFL learners in rural Guatemala and to utilize that data to determine how it conforms to, or possibly challenges, current theoretical conceptions of LLM. In accordance with Morse’s (1994) suggestion that a phenomenological study should utilize at least six participants, this study utilized semi-structured interviews with 10 EFL learners to explore why and how they have experienced the motivation to learn English throughout their lives. The methodology of horizontalization was used to break the interview protocols into individual units of meaning before analyzing these units to extract the overarching themes (Moustakas, 1994). These themes were then interpreted into a detailed description of LLM as experienced by EFL students in this context. Finally, the resulting description was analyzed to discover how these learners’ lived experiences with LLM conformed with and/or diverged from current theories of LLM.
• The purpose of this qualitative, embedded, multiple case study was to examine how both parent-child attachment relationships are impacted by the quality of the paternal and maternal caregiver-child interactions that occur throughout a maternal deployment, within the context of dual-military couples. In order to examine this phenomenon, an embedded, multiple case study was conducted, utilizing an attachment systems metatheory perspective. The study included four dual-military couples who experienced a maternal deployment to Operation Iraqi Freedom (OIF) or Operation Enduring Freedom (OEF) when they had at least one child between 8 weeks-old to 5 years-old.  Each member of the couple participated in an individual, semi-structured interview with the researcher and completed the Parenting Relationship Questionnaire (PRQ). “The PRQ is designed to capture a parent’s perspective on the parent-child relationship” (Pearson, 2012, para. 1) and was used within the proposed study for this purpose. The PRQ was utilized to triangulate the data (Bekhet & Zauszniewski, 2012) as well as to provide some additional information on the parents’ perspective of the quality of the parent-child attachment relationship in regards to communication, discipline, parenting confidence, relationship satisfaction, and time spent together (Pearson, 2012). The researcher utilized the semi-structured interview to collect information regarding the parents' perspectives of the quality of their parental caregiver behaviors during the deployment cycle, the mother's parent-child interactions while deployed, the behavior of the child or children at time of reunification, and the strategies or behaviors the parents believe may have contributed to their child's behavior at the time of reunification. The results of this study may be utilized by the military, and by civilian providers, to develop proactive and preventive measures that both providers and parents can implement, to address any potential adverse effects on the parent-child attachment relationship, identified through the proposed study. The results of this study may also be utilized to further refine and understand the integration of attachment theory and systems theory, in both clinical and research settings, within the field of marriage and family therapy.

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• 1 University of Nebraska Medical Center
• 2 GDB Research and Statistical Consulting
• 3 GDB Research and Statistical Consulting/McLaren Macomb Hospital
• PMID: 29262162
• Bookshelf ID: NBK470395

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypothenar to further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a standalone study, purely relying on qualitative data, or part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and applications of qualitative research.

Qualitative research, at its core, asks open-ended questions whose answers are not easily put into numbers, such as "how" and "why." Due to the open-ended nature of the research questions, qualitative research design is often not linear like quantitative design. One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. Phenomena such as experiences, attitudes, and behaviors can be complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify, and it is essential to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore "compete" against each other and the philosophical paradigms associated with each other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. While qualitative and quantitative approaches are different, they are not necessarily opposites and certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated.

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• Introduction
• Issues of Concern
• Clinical Significance
• Enhancing Healthcare Team Outcomes
• Review Questions

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The purpose of qualitative research

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• Janice M. Morse 3 &
• Peggy Anne Field 4  

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Research fills a vital and important role in society: it is the means by which discoveries are made, ideas are confirmed or refuted, events controlled or predicted and theory developed or refined. All of these functions contribute to the development of knowledge. However, no single research approach fulfills all of these functions, and the contribution of qualitative research is both vital and unique to the goals of research in general. Qualitative research enables us to make sense of reality, to describe and explain the social world and to develop explanatory models and theories. It is the primary means by which the theoretical foundations of social sciences may be constructed or re-examined.

Research is to see what everybody has seen and to think what nobody has thought. (Albert Szent-Gyorgy)

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Morse, J.M. (ed.) (1992) Part I: The characteristics of qualitative research, in Qualitative Health Research , Sage, Newbury Park, CA, pp. 69–90.

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Noblit, G.W. and Engel, J.D. (1991/1992) The holistic injunction: an ideal and a moral imperative for qualitative research, in Qualitative Health Research , (ed. J.M. Morse), Sage, Newbury Park, CA, pp. 43–63.

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Article contents

What questions are best answered using qualitative research, countering some misconceptions, in conclusion, qualitative research: its value and applicability.

Published online by Cambridge University Press:  02 January 2018

Qualitative research has a rich tradition in the study of human social behaviour and cultures. Its general aim is to develop concepts which help us to understand social phenomena in, wherever possible, natural rather than experimental settings, to gain an understanding of the experiences, perceptions and/or behaviours of individuals, and the meanings attached to them. The effective application of qualitative methods to other disciplines, including clinical, health service and education research, has a rapidly expanding and robust evidence base. Qualitative approaches have particular potential in psychiatry research, singularly and in combination with quantitative methods. This article outlines the nature and potential application of qualitative research as well as attempting to counter a number of misconceptions.

Qualitative research has a rich tradition in the social sciences. Since the late 19th century, researchers interested in studying the social behaviour and cultures of humankind have perceived limitations in trying to explain the phenomena they encounter in purely quantifiable, measurable terms. Anthropology, in its social and cultural forms, was one of the foremost disciplines in developing what would later be termed a qualitative approach, founded as it was on ethnographic studies which sought an understanding of the culture of people from other societies, often hitherto unknown and far removed in geography. Reference Bernard 1 Early researchers would spend extended periods of time living in societies, observing, noting and photographing the minutia of daily life, with the most committed often learning the language of peoples they observed, in the hope of gaining greater acceptance by them and a more detailed understanding of the cultural norms at play. All academic disciplines concerned with human and social behaviour, including anthropology, sociology and psychology, now make extensive use of qualitative research methods whose systematic application was first developed by these colonial-era social scientists.

Their methods, involving observation, participation and discussion of the individuals and groups being studied, as well as reading related textual and visual media and artefacts, form the bedrock of all qualitative social scientific inquiry. The general aim of qualitative research is thus to develop concepts which help us to understand social phenomena in, wherever possible, natural rather than experimental settings, to gain an understanding of the experiences, perceptions and/or behaviours of those studied, and the meanings attached to them. Reference Bryman 2 Researchers interested in finding out why people behave the way they do; how people are affected by events, how attitudes and opinions are formed; how and why cultures and practices have developed in the way they have, might well consider qualitative methods to answer their questions.

It is fair to say that clinical and health-related research is still dominated by quantitative methods, of which the randomised controlled trial, focused on hypothesis-testing through experiment controlled by randomisation, is perhaps the quintessential method. Qualitative approaches may seem obscure to the uninitiated when directly compared with the experimental, quantitative methods used in clinical research. There is increasing recognition among researchers in these fields, however, that qualitative methods such as observation, in-depth interviews, focus groups, consensus methods, case studies and the interpretation of texts can be more effective than quantitative approaches in exploring complex phenomena and as such are valuable additions to the methodological armoury available to them. Reference Denzin and Lincoln 3

In considering what kind of research questions are best answered using a qualitative approach, it is important to remember that, first and foremost, unlike quantitative research, inquiry conducted in the qualitative tradition seeks to answer the question ‘What?’ as opposed to ‘How often?’. Qualitative methods are designed to reveal what is going on by describing and interpreting phenomena; they do not attempt to measure how often an event or association occurs. Research conducted using qualitative methods is normally done with an intent to preserve the inherent complexities of human behaviour as opposed to assuming a reductive view of the subject in order to count and measure the occurrence of phenomena. Qualitative research normally takes an inductive approach, moving from observation to hypothesis rather than hypothesis-testing or deduction, although the latter is perfectly possible.

When conducting research in this tradition, the researcher should, if possible, avoid separating the stages of study design, data collection and analysis, but instead weave backwards and forwards between the raw data and the process of conceptualisation, thereby making sense of the data throughout the period of data collection. Although there are inevitable tensions among methodologists concerned with qualitative practice, there is broad consensus that a priori categories and concepts reflecting a researcher's own preconceptions should not be imposed on the process of data collection and analysis. The emphasis should be on capturing and interpreting research participants' true perceptions and/or behaviours.

Using combined approaches

The polarity between qualitative and quantitative research has been largely assuaged, to the benefit of all disciplines which now recognise the value, and compatibility, of both approaches. Indeed, there can be particular value in using quantitative methods in combination with qualitative methods. Reference Barbour 4 In the exploratory stages of a research project, qualitative methodology can be used to clarify or refine the research question, to aid conceptualisation and to generate a hypothesis. It can also help to identify the correct variables to be measured, as researchers have been known to measure before they fully understand the underlying issues pertaining to a study and, as a consequence, may not always target the most appropriate factors. Qualitative work can be valuable in the interpretation, qualification or illumination of quantitative research findings. This is particularly helpful when focusing on anomalous results, as they test the main hypothesis formulated. Qualitative methods can also be used in combination with quantitative methods to triangulate findings and support the validation process, for example, where three or more methods are used and the results compared for similarity (e.g. a survey, interviews and a period of observation in situ ).

‘There is little value in qualitative research findings because we cannot generalise from them’

Generalisability refers to the extent that the account can be applied to other people, times and settings other than those actually studied. A common criticism of qualitative research is that the results of a study are rarely, if ever, generalisable to a larger population because the sample groups are small and the participants are not chosen randomly. Such criticism fails to recognise the distinctiveness of qualitative research where sampling is concerned. In quantitative research, the intent is to secure a large random sample that is representative of the general population, with the purpose of eliminating individual variations, focusing on generalisations and thereby allowing for statistical inference of results that are applicable across an entire population. In qualitative research, generalisability is based on the assumption that it is valuable to begin to understand similar situations or people, rather than being representative of the target population. Qualitative research is rarely based on the use of random samples, so the kinds of reference to wider populations made on the basis of surveys cannot be used in qualitative analysis.

Qualitative researchers utilise purposive sampling, whereby research participants are selected deliberately to test a particular theoretical premise. The purpose of sampling here is not to identify a random subgroup of the general population from which statistically significant results can be extrapolated, but rather to identify, in a systematic way, individuals that possess relevant characteristics for the question being considered. Reference Strauss and Corbin 5 The researchers must instead ensure that any reference to people and settings beyond those in the study are justified, which is normally achieved by defining, in detail, the type of settings and people to whom the explanation or theory applies based on the identification of similar settings and people in the study. The intent is to permit a detailed examination of the phenomenon, resulting in a text-rich interpretation that can deepen our understanding and produce a plausible explanation of the phenomenon under study. The results are not intended to be statistically generalisable, although any theory they generate might well be.

‘Qualitative research cannot really claim reliability or validity’

In quantitative research, reliability is the extent to which different observers, or the same observers on different occasions, make the same observations or collect the same data about the same object of study. The changing nature of social phenomena scrutinised by qualitative researchers inevitably makes the possibility of the same kind of reliability problematic in their work. A number of alternative concepts to reliability have been developed by qualitative methodologists, however, known collectively as forms of trustworthiness. Reference Guba 6

One way to demonstrate trustworthiness is to present detailed evidence in the form of quotations from interviews and field notes, along with thick textual descriptions of episodes, events and settings. To be trustworthy, qualitative analysis should also be auditable, making it possible to retrace the steps leading to a certain interpretation or theory to check that no alternatives were left unexamined and that no researcher biases had any avoidable influence on the results. Usually, this involves the recording of information about who did what with the data and in what order so that the origin of interpretations can be retraced.

In general, within the research traditions of the natural sciences, findings are validated by their repeated replication, and if a second investigator cannot replicate the findings when they repeat the experiment then the original results are questioned. If no one else can replicate the original results then they are rejected as fatally flawed and therefore invalid. Natural scientists have developed a broad spectrum of procedures and study designs to ensure that experiments are dependable and that replication is possible. In the social sciences, particularly when using qualitative research methods, replication is rarely possible given that, when observed or questioned again, respondents will almost never say or do precisely the same things. Whether results have been successfully replicated is always a matter of interpretation. There are, however, procedures that, if followed, can significantly reduce the possibility of producing analyses that are partial or biased. Reference Altheide, Johnson, Denzin and Lincoln 7

Triangulation is one way of doing this. It essentially means combining multiple views, approaches or methods in an investigation to obtain a more accurate interpretation of the phenomena, thereby creating an analysis of greater depth and richness. As the process of analysing qualitative data normally involves some form of coding, whereby data are broken down into units of analysis, constant comparison can also be used. Constant comparison involves checking the consistency and accuracy of interpretations and especially the application of codes by constantly comparing one interpretation or code with others both of a similar sort and in other cases and settings. This in effect is a form of interrater reliability, involving multiple researchers or teams in the coding process so that it is possible to compare how they have coded the same passages and where there are areas of agreement and disagreement so that consensus can be reached about a code's definition, improving consistency and rigour. It is also good practice in qualitative analysis to look constantly for outliers – results that are out of line with your main findings or any which directly contradict what your explanations might predict, re-examining the data to try to find a way of explaining the atypical finding to produce a modified and more complex theory and explanation.

Qualitative research has been established for many decades in the social sciences and encompasses a valuable set of methodological tools for data collection, analysis and interpretation. Their effective application to other disciplines, including clinical, health service and education research, has a rapidly expanding and robust evidence base. The use of qualitative approaches to research in psychiatry has particular potential, singularly and in combination with quantitative methods. Reference Crabb and Chur-Hansen 8 When devising research questions in the specialty, careful thought should always be given to the most appropriate methodology, and consideration given to the great depth and richness of empirical evidence which a robust qualitative approach is able to provide.

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Formulating Research Aims and Objectives

Formulating research aim and objectives in an appropriate manner is one of the most important aspects of your thesis. This is because research aim and objectives determine the scope, depth and the overall direction of the research. Research question is the central question of the study that has to be answered on the basis of research findings.

Research aim emphasizes what needs to be achieved within the scope of the research, by the end of the research process. Achievement of research aim provides answer to the research question.

Research objectives divide research aim into several parts and address each part separately. Research aim specifies WHAT needs to be studied and research objectives comprise a number of steps that address HOW research aim will be achieved.

As a rule of dumb, there would be one research aim and several research objectives. Achievement of each research objective will lead to the achievement of the research aim.

Consider the following as an example:

Research title: Effects of organizational culture on business profitability: a case study of Virgin Atlantic

Research aim: To assess the effects of Virgin Atlantic organizational culture on business profitability

Following research objectives would facilitate the achievement of this aim:

• Analyzing the nature of organizational culture at Virgin Atlantic by September 1, 2022
• Identifying factors impacting Virgin Atlantic organizational culture by September 16, 2022
• Analyzing impacts of Virgin Atlantic organizational culture on employee performances by September 30, 2022
• Providing recommendations to Virgin Atlantic strategic level management in terms of increasing the level of effectiveness of organizational culture by October 5, 2022

Figure below illustrates additional examples in formulating research aims and objectives:

Formulation of research question, aim and objectives

Common mistakes in the formulation of research aim relate to the following:

1. Choosing the topic too broadly . This is the most common mistake. For example, a research title of “an analysis of leadership practices” can be classified as too broad because the title fails to answer the following questions:

a) Which aspects of leadership practices? Leadership has many aspects such as employee motivation, ethical behaviour, strategic planning, change management etc. An attempt to cover all of these aspects of organizational leadership within a single research will result in an unfocused and poor work.

b) An analysis of leadership practices in which country? Leadership practices tend to be different in various countries due to cross-cultural differences, legislations and a range of other region-specific factors. Therefore, a study of leadership practices needs to be country-specific.

c) Analysis of leadership practices in which company or industry? Similar to the point above, analysis of leadership practices needs to take into account industry-specific and/or company-specific differences, and there is no way to conduct a leadership research that relates to all industries and organizations in an equal manner.

Accordingly, as an example “a study into the impacts of ethical behaviour of a leader on the level of employee motivation in US healthcare sector” would be a more appropriate title than simply “An analysis of leadership practices”.

2. Setting an unrealistic aim . Formulation of a research aim that involves in-depth interviews with Apple strategic level management by an undergraduate level student can be specified as a bit over-ambitious. This is because securing an interview with Apple CEO Tim Cook or members of Apple Board of Directors might not be easy. This is an extreme example of course, but you got the idea. Instead, you may aim to interview the manager of your local Apple store and adopt a more feasible strategy to get your dissertation completed.

3. Choosing research methods incompatible with the timeframe available . Conducting interviews with 20 sample group members and collecting primary data through 2 focus groups when only three months left until submission of your dissertation can be very difficult, if not impossible. Accordingly, timeframe available need to be taken into account when formulating research aims and objectives and selecting research methods.

Moreover, research objectives need to be formulated according to SMART principle,

 where the abbreviation stands for specific, measurable, achievable, realistic, and time-bound.

Examples of SMART research objectives

At the conclusion part of your research project you will need to reflect on the level of achievement of research aims and objectives. In case your research aims and objectives are not fully achieved by the end of the study, you will need to discuss the reasons. These may include initial inappropriate formulation of research aims and objectives, effects of other variables that were not considered at the beginning of the research or changes in some circumstances during the research process.

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Saldivar, Iris Lazette, "A Qualitative Descriptive Study of Therapists and Their Work with Socially Isolated Female Victims of Sexual Violence amid the COVID-19 Pandemic" (2024). Doctoral Dissertations and Projects . 5722. https://digitalcommons.liberty.edu/doctoral/5722

The purpose of this qualitative descriptive study was to assess the experiences of therapists and the descriptions of their navigation processes while working with female victims of sexual violence who were socially isolated during the COVID-19 pandemic in the state of Texas. The theory that guided this study was the theoretical framework of loneliness, social isolation, and associated health outcomes. The research study focuses on two research questions that sought to examine the experiences and navigation of virtual treatment of therapists who provided counseling during the COVID-19 pandemic from March 2020 to March 2022. This study sought to find a straightforward description of an occurrence; the goal was to examine how therapists who work with victims of sexual violence describe their work with isolated female victims of sexual violence during the COVID-19 pandemic and how they navigated throughout. Data was collected via semi-structured interviews with 20 therapists. The setting of the interviews was completely virtual and conducted via Zoom. Findings suggest that therapists who treat socially isolated female victims of sexual violence during the COVID-19 pandemic will experience high levels of strain and will utilize effective problem-resolution solving to overcome barriers brought forth by the pandemic.

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

Published on 21.6.2024 in Vol 11 (2024)

Preferences, Needs, and Values of Patients With Chronic Obstructive Pulmonary Disease Attending a Telehealth Service: Qualitative Interview Study

Authors of this article:

Original Paper

• Camilla Wong Schmidt 1, 2 , MSc   ; 
• Karen Borgnakke 2 , MA, PhD, DHA   ; 
• Anne Frølich 3, 4 , MD, PhD   ; 
• Lars Kayser 2 , MD, PhD  

1 Medical Department, Holbæk Sygehus, Region Zealand, Holbæk, Denmark

2 Section of Health Services Research, University of Copenhagen, Copenhagen, Denmark

3 Innovation and Research Centre for Multimorbidity, Slagelse Hospital, Region Zealand, Slagelse, Denmark

4 Department of Public Health, University of Copenhagen, Copenhagen, Denmark

Corresponding Author:

Camilla Wong Schmidt, MSc

Medical Department

Holbæk Sygehus

Region Zealand

Smedelundsgade 60

Holbæk, 4300

Phone: 45 59484000

Email: [email protected]

Background: Digitally assisted health care services and technologies are gaining popularity. They assist patients in managing their conditions, thereby reducing the burden on health care staff. Digital health care enables individuals to receive care that is more tailored to their needs and preferences. When implemented properly, it can promote equity by considering each person’s opportunities and limitations in the context of health care needs, preferences, values, and capabilities.

Objective: This study aims to understand the needs, values, and preferences of individuals with chronic obstructive pulmonary disease (COPD) who are provided with a 24/7 digital health care service. Furthermore, we aim to understand the dynamics of the communities to which they belong and how these communities intersect. This will provide us with the essential knowledge to establish new methods of providing education, including the development of educational activities for health professionals to engage, train, and empower people living with COPD.

Methods: The study included 7 informants diagnosed with COPD who received 24/7 digital health care service support from a regional project in Region Zealand, Denmark. The informants were visited 4 times during 2 months, including a “Hello” visit, a day with a semistructured interview, and 2 days with field observations. The informants participated in a semistructured interview, following participant observation and an ethnographic approach. The interview content was analyzed using an inductive methodology to categorize the empirical data.

Results: Using the inductive approach, we identified 3 main categories related to the informants’ needs, values, and preferences: (1) Health, (2) Value Creation, and (3) Resources. These 3 main categories were based on 9 subcategories: (1) health and barriers, (2) self-monitoring, (3) medication, (4) behavior, (5) motivation, (6) hobbies, (7) social networks, (8) health professionals, and (9) technology. These findings revealed that the informants placed value on maintaining their daily activities and preserving their sense of identity before the onset of COPD. Furthermore, they expressed a desire not to be defined by their COPD, as conversations about COPD often shifted away from the topic.

Conclusions: Digital health solutions and the health care professionals who offer them should prioritize the individuals they serve, considering their needs, values, and preferences rather than solely focusing on the medical condition. This approach ensures the highest level of daily living and empowerment for those living with long-term health conditions. The communities surrounding individuals must engage in constant interaction and collaboration. They should work together to incorporate people’s needs, values, and preferences into future digital health services, thereby promoting empowerment and self-management. New educational programs aimed at developing the digital health service competencies of registered nurses should facilitate collaboration between the 2 communities. This collaboration is essential for supporting patients with long-term health conditions in their daily activities.

Introduction

In recent years, a transformation has been occurring with the increased use of digitally assisted health care services and technologies. These advancements aim to reduce the burden on the health care work force by enabling patients to better manage their own conditions [ 1 ]. Digitally based health care offers an opportunity for personalized and tailored health care services that better meet the needs of individual patients. Digitalization can also help reduce inequities if introduced thoughtfully, with an awareness of both the opportunities and barriers for individuals, considering their health care needs, preferences, values, and capabilities [ 1 ].

When health care professionals have the appropriate knowledge about these factors and are trained to address them, it can facilitate meaningful conversations and better connections with those they serve. This, in turn, can increase patient motivation and ease their access to digital services [ 2 , 3 ]. This necessitates educational programs for health professionals that focus on understanding their patient’s needs and values, capability, person-centered services, self-management, and communities surrounding the patient. These programs should be based on evidence from empirical data obtained through interviews and observations of individuals with firsthand experience using digitally enabled health care services [ 4 ].

Digital Health Care and Chronic Obstructive Pulmonary Disease

Chronic obstructive pulmonary disease (COPD) is a leading cause of death, responsible for over 3 million deaths worldwide in 2019 [ 5 ]. In Denmark, 3355 individuals died from COPD in 2020, making it the second most common cause of death in the nation [ 6 ]. As a result of the progressive loss of pulmonary function, people with COPD experience impairments in their daily activities. These impairments can inhibit mobility, leading to a sedentary lifestyle [ 7 ]. The Global Initiative for Chronic Obstructive Lung Disease (GOLD), established in 1998, has developed a set of recommendations for managing COPD. Evidence shows that self-management improves outcomes for patients with COPD and reduces the likelihood of hospitalization [ 8 , 9 ]. The recommendations by GOLD also address how increased self-management can help motivate and engage people, leading to positive adaptations in their health behaviors.

Digital health monitoring is one of the most widely used tools for self-management of COPD and other long-term health conditions (LTHCs) and appears to reduce the risk of both hospitalization and acute visits [ 10 ]. In 2015, a randomized controlled study was conducted with 100 people with COPD, with 48 randomly selected for home monitoring and 52 for usual care. The study found that people with COPD who used a home monitoring kit for 6 months had improved health-related quality of life and reduced anxiety scores compared with people who received usual care. The study also showed that people with home monitoring kits had fewer and shorter hospitalizations than those receiving usual care [ 11 ]. Furthermore, people with COPD who participate in telemedicine-based interventions feel safer, more empowered, and more in control of their own disease [ 11 ].

People with LTHCs who possess an enhanced ability to manage their condition themselves and experience a higher level of empowerment tend to have a reduced risk for hospitalization [ 12 ]. A likely explanation for this can be found in a qualitative study from 2017, which identified 3 main themes for individuals participating in a telemedicine intervention: (1) a sense of improved security and control; (2) a better understanding of their disease; and (3) the benefits of virtual conversations [ 13 ]. However, these studies do not take place within person-centered digital health communities and do not address the significance of the participants’ sociodemographic characteristics. Evidence of sociodemographic characteristics is important, as research indicates that resourceful individuals benefit more from available health care, and those with an interest in technology may derive greater benefits from digital health solutions [ 14 ]. In addition, the prevalence of COPD and other chronic conditions, such as ischemic heart disease and type 2 diabetes mellitus, is higher in areas with populations characterized by lower sociodemographic status than in the average population [ 15 , 16 ]. This may contribute to the risk of inequity, as lower sociodemographic status often correlates with both lower levels of education and lower digital health literacy [ 15 , 17 ].

Educational Programs for the Digital Transformation

Another problem often overlooked concerning disadvantaged individuals living with 1 or more LTHCs is their reluctance to attend traditional educational services structured around scholastic planning. To reduce inequity, there is a need to develop new approaches to include this segment of the population, utilizing educational methods that are not scholastic or built on classical teaching methods such as classroom-based education. In response to this need, we have initiated a project where, based on an ethnographic approach involving interviews, observations, and the cocreation of educational materials, we will develop a new methodology inspired by social learning theory [ 18 , 19 ]. To provide guidance for the development of new educational programs and curricula tailored for digital transformation, we have examined, on an individual level, the preferences, values, and needs of people with COPD in the context of unrestricted access to a person-centered, digitally enabled health service available 24/7. Informed by social learning theories, we have also explored the existence of communities these individuals are part of in relation to their everyday lives and their ability to identify potential sources of support.

The purpose of this study is to gather essential information about individuals living with COPD within the context of accessing support from a regular 24/7 digital health care service and the dynamics of the communities to which they belong. This information will empower us to design new methods for providing education, including the development of educational activities for health professionals. These activities will enable professionals to effectively engage, train, and empower people with COPD.

This has led us to the following research questions:

• Research question 1: What matters for people with COPD with respect to their needs, values, and preferences in the context of using a 24/7 digital health service?
• Research question 2: What is the role of the health care and social networks, respectively, and how are these a potential part of communities formed around the patient’s health condition?

This report is a part of a larger PhD project and constitutes the first of 4 articles. The overarching aim of this work is to obtain insights into the lives of people with COPD, supported by a 24/7 digital health service, and to use this information to develop a patient-case–based curriculum to educate health professionals on effectively engaging, enabling, and empowering individuals living with COPD.

The first study reported here was conducted from August 1, 2020, to January 31, 2021. This period coincided with the COVID-19 pandemic in Denmark before vaccinations were introduced to protect against severe cases. The study is qualitative in nature, inspired by ethnographic research methods, and includes semistructured interviews and field observations [ 20 ]. The field study involved visiting the homes of people with COPD 4 times over 2 months. The visits included a preliminary “Hello” visit, a day dedicated to a semistructured interview, and 2 days focused on field observations. This article focuses on the data and results gathered during the second visit, which involved conducting the semistructured interview.

The digital health service utilized in this study is provided by an innovation project in Region Zealand, Denmark, called PreCare. This project is built on the Epital Care Model (ECM) [ 21 , 22 ]. The ECM, developed in 2016, offers a 24/7 digital health care service where individuals with LTHCs monitor their own health with the assistance of nurses from a response and coordination center (RCC). The ECM consists of 6 stages: citizens with unknown LTHCs, active and independent living, virtual assisted living, virtual assisted living with support from health care professionals, outpatient care at home, and admission to a local health clinic or hospital. It serves as a template for digital health services based on patients’ medical needs [ 22 ].

In total, approximately 400 participants with COPD or ischemic heart disease were enrolled in the PreCare project over a 4-year period. At any given time, there are approximately 150 participants. Each participant was provided with a tele-home monitoring kit, which included a tablet. Additionally, for participants with COPD, the kit included a spirometer, a thermometer, a pulse oximeter, and a box containing acute medicine. The participants were supported by an RCC, which was staffed with registered nurses (RNs) and an eDoctor. According to the project protocol, participants monitored their condition daily. They could always call the RCC to discuss their condition, and the RCC regularly initiated contact to ensure participants felt safe and confident. During these conversations, self-management was also supported (C Schmidt, MSc, personal communication, 2020). In the event of deterioration, the tablet would indicate a yellow or red code and send a message to the RCC. The nurses would then respond to the code and call the participant to follow-up on the reported condition. If needed, participants can take medicine from the box to treat exacerbations. In cases of further need, the nurses would contact the eDoctor [ 23 ].

The PreCare project initially provided a list of 15 participants diagnosed with COPD, each with varying degrees of severity, all of whom expressed interest in participating in the research related to the PreCare project. Subsequently, over a 4-month period, 10 of these participants were contacted by phone, selected from the top of the list. After receiving oral information about the project, 8 of these agreed to participate. However, 2 participants were not interested and the remaining 5 were not contacted as the recruitment period had exceeded. Furthermore, 1 potential informant expressed disinterest in participating after the initial meeting. The selected number of informants was determined by the limitations of the study design. The informants were invited in 3 separate periods: 3 informants were invited from August to September for the first period, 2 informants were invited from October to November for the second period, and 2 more were invited from December to January for the third period. In total, 7 informants were recruited. After obtaining oral consent via phone, further information was sent by email to 3 informants, while the other 4 did not require this. After 1 week, all 7 informants were contacted again by phone to schedule the first in-person meeting, which took place within 1-2 weeks. This study’s inclusion and exclusion criteria followed the PreCare protocol [ 23 ].

Data Collection

To establish an emotional and trustworthy relationship with the informants, we scheduled a visit to their homes (the initial visit). This approach aimed to strengthen the connection between the researcher and the informants, fostering an informal and friendly atmosphere during the interview. To conduct the semistructured interview, we used an interview guide inspired by Spradley’s [ 20 ] ethnographic interview techniques. The interview was conducted in a friendly and casual approach, allowing the informants to share their experiences and discuss their everyday lives with a chronic condition as they deemed appropriate [ 20 , 24 ]. All interviews were conducted in the informants’ homes and were audio-recorded with their consent. As a result of the informants’ background, the interviews were conducted in Danish, and only quotes were later translated into English by the first author (CWS). All informants participated in the interviews; 1 participant had his spouse present during the interview.

Interview Guide

The interview guide was developed based on sociotechnical ecosystem thinking, our concept of technology readiness, and an attempt to identify how individuals belong to 1 or more communities, inspired by social learning theory ( Multimedia Appendix 1 ) [ 25 - 28 ]. We conducted the interview with an open-minded approach, including “how” questions, to enable the informants to respond as they found suitable. The interview guide was structured around 6 thematic areas: daily activities, health, measurements, communities, RCC and PreCare, and literacies and digital literacies. For each of the thematic areas, we included 1 main question and underlying questions to sustain the conversation throughout the interview. For example, the theme “daily activities” included the main question: “Can you tell me how a typical day is for you?” In the theme “health,” the main question was “Can you tell me how COPD has affected your life?.” The 6 themes were defined by the authors and were written in Danish.

Data Analysis

The interviews were conducted, transcribed, and analyzed by the author CWS. The transcripts were analyzed using content analysis, a method for systematically and objectively describing and quantifying phenomena. An inductive approach was used, beginning with open coding to create categories, followed by abstraction to generate main categories [ 29 ]. A 3-step content analysis was used to identify the main categories.

Analysis of Interviews

Each interview was transcribed and carefully reviewed to understand the context of the data. Subsequently, the transcripts were uploaded and coded using NVivo 12 (QSR International) [ 30 ] by CWS. Over 700 codes were identified and categorized into 66 subcategories. These subcategories were then merged to create an affinity diagram initially using paper and later repeated using NVivo. This process resulted in 9 categories, each containing 4-12 subcategories, respectively. The category “Self-Monitoring” had the fewest subcategories, while “Health Professionals and Social Network” had the most subcategories. The 9 categories were analyzed by CWS and the last author (LK) to synthesize the data into 3 main categories. CWS, who holds an MSc degree in health informatics and has been educated in qualitative methods, collaborated with LK, a professor in health service research with experience in both qualitative and quantitative analyses, for this process.

The 3 main categories identified were health, value creation, and resources ( Textbox 1 and Multimedia Appendix 2 ). The category of health consisted of 3 subcategories: health and barriers, medication, and measurements. The category of value creation was formed from hobbies, behavior, and motivation. The category of resources was merged from 3 subcategories: social networks, health professionals, and technology. In our analysis, we paid particular attention to what matters to people with COPD, supported by the theories upon which the interview guide was built.

• Health and barriers
• Self-monitoring

2. Value Creation

• Motivations

3. Resources

• Social network
• Health professionals

Ethical Consideration

Information regarding the study, partnerships, and data handling complies with the Helsinki Declaration and was communicated to the informants in both written and oral forms. They were informed that their participation was voluntary and anonymous and that they could revoke their consent at any time. Furthermore, they were assured that their involvement would not prevent them from participating in the PreCare project. All consent was obtained before the interview, through the signing of a consent form. The Danish National Center for Ethics was not required to approve the study as no biological material was used. Any data obtained from the informants were treated as personal health information and handled in accordance with Danish legislation (General Data Protection Regulation [GDPR]) and securely stored on drives. Health science questionnaire surveys and interview studies that do not involve human biological material [section 14(2) of the Danish Act on Committees] do not require reporting or approval from the Danish National Centre for Ethics [ 31 ].

Characteristics of the Informants

A total of 4 men and 3 women participated in the interviews (age range 52-81 years). Two informants lived with their spouses. Despite having had COPD for an average of more than 2 years, the severity of each participant’s COPD varied. Some participants continued to smoke daily despite being aware of the health risks. One male participant was unable to provide information to categorize his level of education, 2 had only completed elementary school, while 4 had completed higher education. There was no evidence of their usage of technology, such as websites and participation in online communities, in relation to their medical concerns. All informants had been included in the PreCare Project for more than 6 months.

The Three Main Categories

The main categories and subcategories identified in the content analysis provide insight into and offer a comprehensive understanding of the daily life situations and experiences of the informants living with COPD. Upon reviewing these categories, attention is drawn to both the specific consequences of a COPD diagnosis and how practical hurdles and activity levels are affected in the daily lives of the informants. These impacts are described in the interviews as limitations on activities the informants were accustomed to participating in, as well as a determination to carry out specific household duties despite a decreased energy level. The duality between “restrictions” and “experimental salvage” is evident in the category of activity but is also observed when interviews approach questions such as self-monitoring. Here, they take on different meanings, tasked with reclaiming self-discipline and control on one hand, while also being concerned that daily measurements can serve as a reminder of one’s limitations, akin to “being reminded of having a chronic disease.” Thus, through the interviews, it becomes apparent how the informants encounter difficulties and impediments in carrying out daily tasks due to their condition. In everyday life, this translates to tasks that were once feasible but now being difficult or impossible to complete. The distinction between “then” and “now” is frequently referenced, highlighting the contrast between the condition “before I got COPD” and “the situation as a chronic.”

Health and Barriers

This category describes the experience of living with COPD, detailing how it has impacted daily life and outlining the physical and mental barriers experienced throughout the day or in general.

The informants did not express interest in delving deeper into their everyday lives with COPD. Instead, they prioritized discussing other aspects of their daily life or past experiences. They responded quickly to questions about COPD and then redirected the conversation toward other topics. This deliberate redirection indicated their reluctance to discuss their chronic illness.

Interviewer: ...Can you tell us how your diagnosis has affected your life?

M3: So, I’m crushed. One positive thing is that I had to sell my motorcycle and all my stuffs, I used to gather a lot. We had a 400 kvm house with basement and ceiling, which was filled with enamel sign, books, magazines, tech cars and bicycles...

The informant swiftly and effectively shifts his focus away from negative thoughts about COPD’s interference and begins discussing his previous interest in used objects. He demonstrates a clear desire not to dwell on the negative aspects of his existence, opting instead to redirect the conversation toward something positive and reminiscent of happier times.

The limitations imposed by COPD forced the informants to forego certain daily activities, some of which could have contributed to an improved quality of life. The frequent shortness of breath and coughing prevented them from engaging in activities such as walking outside, performing household duties, or general personal care needs.

Interviewer: ...but is there other things COPD had done, that you cannot do anymore, completely?

M1: Well, I cannot go to the city and get me a cup of coffee at the street restaurant.

Interviewer: No, that’s true...

M1: I’m not even sure I’d be able to go to the garbage cans anymore (coughing), but when my friend comes and the weather is good (...) he drives me in that wheelchair over there, and then we sit together and drink a cup of coffee and talk...

The informant’s worry about his capacity to take out the trash underscores the profound impact that COPD has on his life, to the extent that he feels unable to leave the house without assistance. Conversations with the informant were replete with stories where social interactions played a significant role.

For some individuals, participating in a community became challenging due to shortness of breath caused by COPD. Additionally, for others, COPD had led to the complete exclusion of previous acquaintances.

M3 wife: In return, you have thought about how many of them you have helped (...), you don’t really hear from them anymore, because now you can’t help them anymore.

M3: Yes, there are many of those whom I have been calling, “Great that we are talking to you, we were just thinking of you, by the way we have a locker that doesn’t work”. You never heard from these people again, and I have been discussing this with others, and it is true...

The informant noted that his inability to visit friends anymore, coupled with their failure to reciprocate, has made it increasingly difficult for him to maintain relationships with them. This situation has surprised him, particularly because he is no longer able to provide assistance, as reported by his wife.

Self-Monitoring

This category highlights how the informants manage and self-monitor their condition. Furthermore, it explores how the outcomes of their monitoring efforts may impact their day and their motivation to engage in activities.

In the informants’ descriptions of their daily lives, the topic of self-monitoring for the PreCare project was not initially mentioned. It was only during the conversation around this subject that the activity itself was explained and, in some cases, mentioned.

M1: Yes but, it’s not interesting, no(...) and then I hope in the end it can help other people too. So, I take it with pleasure, but I could still think of something more exciting things to do...

W1: Yes, but they have changes it (pause), I’m just going to write something today, I’m not in for it. It’s not correct anyway (temperature)

The self-monitoring is described here as uninteresting, with 1 informant considering it a waste of time because he could find more engaging activities to do during his challenging day. The second informant emphasizes the importance of accurate measurements for individuals to actively participate in self-monitoring.

The outcomes of self-monitoring had a significant impact on the informants. The results were displayed as 1 of 3 colors—red, yellow, or green—on the tablet’s display. The meaning of the color had a tangible effect on the informant’s day.

Interviewer: Yes, exactly when, but then how? Because now you said that you had a red measurement yesterday was it then a difficult day when you have a red measurement?

W2: Yes, that is a stupid day, at first the mood is going down, and I am going, well yes I usually get restless, because I can’t, because a day like that, I am thinking about...is it now it’s going in the wrong direction...

The informant faces difficulties getting through the day when the red color appears, disrupting their daily routine. Additionally, the informant begins to question whether their COPD-related health is deteriorating or if the red color indicates a negative trend.

Conversely, the green color holds significance for the informant, particularly in contrast to the red color. Seeing a green measurement might enhance the informant’s enjoyment of daily life, especially if it has been a while since they last saw a green result.

W1: It’s green! (happy/excited)

W1: It haven been that for a long time....

Although there was considerable excitement surrounding the green measurement, its implications for the maintenance of the day remained unclear. However, the informant did clarify early in the conversation that she felt more motivated to venture outside into the garden on good days.

Being chronically ill entails the necessity of medication and its management which, for most of the informants, has become integrated into daily life. This category elucidates how the informants handle their medication and who supports them in managing it. The informants varied in their approaches to and understanding of medication, and the availability of help and support was crucial.

W2: Thus, those prescriptions, I also have one lying here, and this is the new medicine I got, and I don’t understand it, because I should have asked about it.

W3: Yes, I have these blue folders, you probably don’t know them, but those blue boxes for morning, midday, evening, and there is for (cough)...think there is for eight days, probably, that can be right? Eight days, I believe that, and I sort them every second week. I sit by the dining table, and line the whole thing up, and then I sort them.

The aforementioned examples depict 2 different scenarios of handling and understanding medicine. In the first scenario, one of the informants blames herself for not seeking information about the new medication when she first started taking it because she is unfamiliar with it. While she accepts responsibility for her medication, she still requires assistance in understanding it. By contrast, the second informant has established routines for managing her medication, and therefore, understands what she deposits into the pillbox.

As a result of errors and inconsistent care from municipal employees, the informants began to question their trust in the municipality’s care team. Although the informants could receive assistance from the municipality with their prescriptions and medication management, they found that the assistance and knowledge provided by municipal employees lacked the necessary qualifications.

W2: ...but she wasn’t, and then she made the mistake of repeating after the other, and I quickly notice it, and it’s not, it is not calcium tablets we sit and play with.

This is a serious concern, as indicated by the informant’s statement that the pills are not calcium supplements, and taking medication in incorrect amounts could have negative effects on her health. Therefore, it is vital that her medication is prescribed correctly for her condition.

When it comes to medication, there was a strong tendency among the informants to rely on the RCC nurses, especially during exacerbations. The RCC nurses use telephone communication to reach out to the informants and inquire about their health. If necessary, the nurses may advise the informants to take additional medication. The informants comply with the nursing advice and adjust their medication accordingly because they have a high level of trust in the digital nurses.

M2: Yes, “Nærklinikken” is the ones who change it now, yes, they just say you have to take two breaths in the morning, and they do it regularly if I have felt worse for a little while. I’ll just get more, double up.

M2: Yes, I feel very safe.

When it comes to medication, the informants trust the guidance of the digital nurses because they feel it is their responsibility to adjust their medication. They feel secure knowing that others are assisting them and providing direction with their medication management.

When the RNs oversee the health condition of the informants, their independence in managing their chronic disease and their understanding of their medication do not seem to improve. It appears that the RNs are still somewhat paternalistic. However, the informants do experience a sense of safety, particularly when it comes to their health and medication.

Value Creation

This category identifies the former daily routines that had to change or be excluded from the informants’ lives because of COPD. Furthermore, it highlights the new routines that should be adapted because of the weakened ability caused by their condition.

The informants must adapt their daily routines to accommodate their diminished capacity because of COPD, necessitating the establishment of new habits. Consequently, they may take fewer walks, experience reduced appetite, or sleep longer than usual. This limitation often confines the informants to their residences. When queried about their daily lives, the informants provided a range of responses. Some spoke very briefly and exhibited a negative attitude, while others believed that obtaining a comprehensive understanding of how COPD impacts daily activities was crucial.

Interviewer: ...oh if you should tell me how a typical everyday looks for you K1, what do you do on a general day?

W1: Sitting here

Interview: You sit there

W1: Yes (cough), but sometimes when I’m well, I go out in the garden.

In this case, the informant primarily spends time sitting on the same couch and does not elaborate much on her everyday activities. She finds joy in moving outside and into the garden whenever possible. Previously, she engaged in various artistic activities and housework as part of her daily routine, but these tasks are no longer feasible due to her health.

Some informants expressed that it was still important to maintain cleanliness in their own homes. While the municipality provides cleaning assistance to the majority of the informants, some individuals still prefer to handle specific tasks on their own.

W2: ...I said to her, now don’t think I’m crazy but I’ve been standing and ironed my bedsheets for several days, then she was about to faint (...). Only the elderly irons their bedsheets. I have always done it, and I will not stop doing it as long as I can stand on my feet.

She continues to prioritize tasks such as making her bed and changing the sheets, as she has always done. Despite the challenges posed by her health, she decides to persist because these tasks hold significant importance for her. However, she acknowledges that it may take several days to complete them. By contrast, most of the informants expressed overall dissatisfaction with the cleaning assistance provided by the municipality, stating that they often had to make numerous corrections.

Another aspect they felt had changed because of their condition was the rhythm of the day. They found that getting out of bed in the morning was becoming more challenging, or they noticed that they were waking up earlier. This change could be attributed to their increased frequency of sleeping and reduced engagement in everyday activities.

M1: Yes. Well, but I wake up before Satan gets his shoes on, because I am used to doing something, and I cannot really more, so I never get really really tired (coughing), so I do not get so terrible many hours of sleep (coughing).

Here it is highlighted that the informant’s daily rhythm has shifted from its previous pattern, and the indication is that their lack of sleep stems from both reduced activity and diminished tiredness. None of the informants mentioned experiencing anxiety or shortness of breath during the night, which could also contribute to a different daytime rhythm. However, the increased need for sleep during the day was frustrating, as it could result in missing out on certain activities.

The informants engaged in different activities in their lives that held personal value for them, and some had to alter their activities because of COPD. This category focuses on the activities that the informants currently undertake and have previously engaged in.

The activities and interests of the informants varied depending on their weekly or daily routines. However, their condition often took precedence over their interests, and the activities that were feasible differed among the informants. Additionally, there was a gender disparity, with men favoring fishing and other outdoor activities, while women tended to engage in activities such as handicrafts.

M2: So now that I have been sick, yes, I go out and fish a little, then I go and help a little with some horses.

W3: ...and then I’m knitting or doing the crosswords or trying to sew on the sewing machine (laughing).

M1: yeah, I’m trying to do the things I care about and like, unfortunately I can’t paint anymore, as I cannot stand the smell of turpentine anymore, it’s sad because I’ve spent a lot of time painting, I don’t have the energy to start writing more books. So I, I read a little, it’s a bit difficult now with these glasses, but I’ve read a lot, and I get a lot of pleasure from it.

The different accounts provided by the informants offer insights into how interests are possible for individuals with chronic illness as well as how the condition can prevent them from pursuing activities they like/enjoy. Despite certain interests being curtailed by the condition, informants still strive to engage in activities that bring them joy and hold value for them. However, in some cases, informants found it challenging to pursue their interests because of the awareness of potential shortness of breath.

The informants expressed similar daily desires and willingness to go outside, but their walks had become shorter over time. Occasionally, they cited the weather as an excuse to stay indoors.

W2: Then the little dog and I go in and rest for an hour or half an hour, and lull a little and sleep a little. Perhaps it is something completely different. Then I get up and get ready, and then I go with my little dog and pick up the newspaper in the mailbox. We used to go for longer walks, but I don’t unfortunately, I can’t do it anymore.

W3: For just such a trip, so there is not much nature to go and look at from here and down to the municipal office, but just to get out and get some fresh air

The informant acknowledges here that the challenge of going on longer walks is something that annoys her, but she simply cannot manage it anymore due to shortness of breath. Despite this limitation, going for a walk can bring relief to the informants. Even though nature may not always be visually stunning, the informant finds solace in being able to get outside, especially on slightly gloomier days.

This category underscores how the informants experienced a lack of motivation to engage in daily activities. Throughout the conversations, there was a tendency to discuss things they would love to do but lacked the competence or strength to accomplish, or they invented excuses because the tasks seemed overwhelming. These could range from simple tasks such as planting a rose to more complex endeavors such as writing a book, attending gym classes, or cooking.

W1: Not at all, and then you lose the motivation.

Interviewer: Yes, I can understand, if you have been somewhere where you think it was good, and then you come to something else that you don’t think is at the same standard...

W1: but then, okay, I am not...there, but oh its hunting me, when I have to go. I will probably just get it over with, right?

The informant’s desire and motivation to participate in a COPD exercise team depend on how the teacher conducts the sessions. A negative experience with teaching methods in the past has diminished the informant’s motivation, making it difficult for them to participate. It has transformed from an activity that brings joy to feeling like an obligation, something that the informant feels they must do rather than something they want to do.

Social Networks

This category explores the social networks that the informants are a part of and how they use them in their day-to-day activities.

The size of the social network varied among the informants, but the significance of social interactions was equally important to all of them. Family relationships showed considerable diversity among the informants, with some maintaining close contact with their family through daily conversations, weekly scheduled visits, or having their spouse present. By contrast, there were some informants who had limited contact with their families and spent much of their daily lives alone.

W2: I miss him very much. We lived in Fyn, and we talked over the phone several times a week. I miss my family very much, and I also miss my friends. And they all passed away...

W2: ...I talk to my daughter. So so I don’t talk about..., she can say to me, I think you sound a little stalled mother, because then I’m just for the moment and then, and then we’re not talking about it anymore. She knows what it is, but we don’t need to.

The above description indicates that the informant is alone due to deaths in the family and social circles, and there are a significant number of people missing from her family. Interestingly, the informant does not mention at the present time that she still has 2 daughters, which she only brings up later in the interview. The informant’s description of the varying family relations indicates that she is left more isolated and alone, which telephone conversations with her daughters cannot fully mitigate. The conversations surrounding the family and friends of the “lonely” informants were marked by a sense of sadness and depression over the lack of contact.

Informants with close family relations expressed how their family and close relationships maintain continuous contact with them. The conversations were even interrupted by phone calls from their families, highlighting the frequent and ongoing nature of their communication.

M2: Yeah, she is calling, or she has stopped a little, but otherwise she calls every morning, around 9 o’clock or something like, “How do we breathe today?” She says then, (laughing)

W1: Then I also have my granddaughter, I talk a lot with her, but I also take care of what I said to her, because she is a little unstable.

There are 2 different scenarios for contact described here, both indicating that the informants have contact with their families, signifying close relationships. In one instance, it is the informant’s mother showing interest in their self-monitoring and health status. In the second scenario, the informant not only maintains close contact, but also plays a protective role for her grandchild, who also suffers from a diagnosis. Despite varying family dynamics, it is evident that the informants can be divided into 2 groups: those with close family relations and those lacking such connections.

Their interest in engaging in social activities was also significant, but the informants often found themselves coming up with excuses for not participating or found it challenging to leave their homes.

W3: Yes, I haven’t reached it yet, but I’m probably getting enough. There has been something on Friday, because otherwise I had set myself up for, I have otherwise gone to gym down in Vig, but.. that, which is quite far from the station off and down to Balsagård (...), of course I can go down there from time to time, but as I have it, oh for the last season there, I was not there quite many times, but it costs no matter what, they do not pull anything from because I have not been there, and that.. it annoys me a little. Then there is Red Cross that has something like this in high town.. exercise, sport is known enough, and it is every Friday morning, but there has been something here the last couple of Fridays, and I also have to just get into the rhythm that I have to go there until half 10 p.m.

As emphasized, the informant highlights that traveling a long distance to attend gymnastics is a major obstacle. Despite continuing to pay for it, this does not motivate her to attend regularly. She also mentions the challenge of incorporating it into her Friday routine and making it a regular part of her schedule.

They did not envision themselves participating in social events related to their COPD. Some of them were members of Lungeforeningen, the Danish Association for Lung Diseases. Although the Lung Association organizes various gatherings for those with COPD, none of them appeared interested in attending.

Health Professionals

The category focuses on the informants’ interaction with various health professionals and how those relationships hold significance for them.

The relationship with health professionals was highly significant, as it was essential for the informants to feel secure while also being with mutual respect and seriousness. The informants interacted with various health professionals in their daily lives, and this analysis distinguished the difference between “ordinary” health professionals and PreCare nurses.

The informant’s relationship with the assistance offered is crucial.

W2: After a hospitalization for yeah I don't know, let's just say a year ago. There seems to be, I can’t remember who thinks that there should be a home care and dosing the medicine. And now you must not misunderstand me because I am not a racist, but there comes a little colored girl who could not really speak Danish and she was not very sweet if she had been sweet and smiling, pleasant, then it would have been something else, but it was she not, and then she made mistakes twice after the other, and I discovered it quickly, and it is not, it isn’t the tablets we sit and play with.

According to the informant, the connection with home care has been challenging because of mistakes and uncertainty. As a result of this, the informant has lost faith in the home care, which should be there to lend a helping hand and not cause her problems on a regular basis.

Unlike other health care professionals, the nurses in PreCare have succeeded in establishing a sense of security and mutual respect with the informants. The collaboration with those involved in their COPD care instills confidence in the PreCare project and the nurses among the informants.

M1: There is most of the contact through the nurses, just to start, just when I started up there was a doctor who was here, and so I have nothing bad to say about him, oh and it is also those who prescribe some medicine if I lack it, and such some things not too (slang). I think I have a good relationship with them, and are really pleased to have them, oh...and feel there is a great confidence to be with them. So, as I said earlier, I was sure I would have become a burden for the hospital if I had not known them. The society saves money, and that’s not bad.

W2: But Nærklinikken has helped me, exceptionally. I’m glad I got in touch with you, you can believe. I don’t know what I would have done without medical care. They do nothing.

The informant expresses happiness for the nurses and thinks that their connection is good. The following description includes several elements though. The informant mentions that their participation in PreCare makes them feel like less of a burden for the hospital and the municipality, which holds significant meaning for them. He also expresses faith in the nurses, which he had expressed several times in the conversation. Being a part of a project that highlights the superior care provided by nurses compared with general medical care has been particularly significant for the female informant.

Nurses are not only available to informants, but also offer support if an informant’s condition deteriorates. When an exacerbation happens, trust means the informant has no reason to question the nurses and takes the prescribed prescription without a second thought.

M2: Yes, Nærklinikken says it, it is the ones who change it now, yes, they say you just have to have two breaths in the morning, and they do it regularly if I have had it a little bad for a while. No, then I’ll just be put up, double up.

Without hesitation, the informant chooses to follow the nurses’ recommendations. He has completely surrendered to the project, giving them full responsibility for his condition.

This category covers the informants’ daily technology and their search for health-related information.

All informants admitted to having technology at home, although the way they used it and its purpose varied. For some, technology provides entertainment during moments of boredom in their daily lives.

W1: Yes, I’m mostly on the computer when I get bored.

Interviewer: What are you doing on the computer?

W1: I am playing games

W1: I have two different games I have discovered.

Technology was not utilized by the informants as a means to gather information about COPD. The informants felt they already possessed all the information they needed about COPD, and they were concerned that obtaining more information might increase their anxiety.

M1: It is very very rare; it is very rare. If I happen to hear that there is something new about it, then I can well find out to look it up, that it is not so exciting to read about, so

W1: I think the more you read, the more nervous you become.

The informants do not use technology to seek information about their condition. The informants did not mention being part of online groups where information could be shared during the interviews. None of the informants mentioned using social media platforms such as Facebook as a community for sharing information about their condition. They also emphasized that they generally did not share information about their condition through digital solutions.

M3: It irritates me sometimes when we sit, sometimes I cut through and say, now we don’t want to talk about illness, because, oh, then such a short evening can go

The medical equipment provided by PreCare did not pose any problem for the informants to use on a daily basis. They all expressed how easy it is to use it and how it takes only a few seconds to use the technology. They appeared confident and stated that they performed the measurements every day.

M4: it’s so easy, that’s in order...the only thing is now just, the crazy computer goes out, or (...), I can’t restart, even though I have PIN code...no matter what I do, it won’t, so I wait when it comes a past...so it can restart again, the only problem...

Despite the ease, they experienced some issues with the devices. The informants encountered issues with logging in, forgot to charge the tablet, or even misused the thermometer.

Principal Findings

This study offers valuable insights into understanding the needs, values, and preferences of individuals living with COPD as well as which communities they identify with in a digital context. Indeed, the findings highlight that while fluctuations in their health condition significantly affect the daily lives of the informants, factors such as having hobbies, old habits, and social connections play a crucial role in their overall well-being. This underscores the importance of recognizing individuals with COPD as complete human beings beyond their medical condition.

It is interesting to note the distinction between the 2 communities the informants belong to. The community centered around the RCC represents a vital support network for them, where they feel included and have developed trust with the staff. This highlights the importance of such digital health services in providing continuous support and guidance for individuals managing chronic conditions such as COPD. Involving close relatives in the community centered around the RCC can further enhance the support system for individuals with COPD. The other community involves participation in social activities outside the context of their condition which provides informants with opportunities for social interaction, enjoyment, and connection with others beyond their health concerns. These activities offer a sense of normalcy and contribute to their overall quality of life, allowing them to engage in meaningful relationships and experiences beyond the realm of COPD management. Even though the informants may face constraints due to their condition, they still find value in participating in social activities, even if their involvement is limited.

The Needs, Values, and Preferences in the Digital Context

The informant’s emphasis on maintaining their daily activities underscores the significance of preserving their sense of normalcy and independence despite their COPD symptoms. It reflects their desire to continue living fulfilling lives and not be defined solely by their health condition. Symptoms often contribute to a lower quality of life and well-being. The findings from an earlier study [ 32 ] resonate with the experiences reported by individuals with COPD in this study. Breathlessness, a common symptom of COPD, can significantly impact an individual’s quality of life by limiting their ability to engage in daily activities and causing distress. This aligns with the participants’ reports of reduced quality of life related to breathlessness, highlighting the importance of addressing this symptom to improve overall well-being for individuals living with COPD. While outdoor activities may be affected by COPD, the focus of the informants seems to be more on how the disease impacts their ability to engage in everyday tasks and maintain their hobbies or household chores. This also resonates well with another study including interviews of patients with COPD [ 7 ]. The study revealed that for women, being active in housekeeping was important and valued, while for men, maintaining the garden held similar significance. They also reported that people with COPD prefer activities within their home or immediate vicinity, showing little interest in engaging in social activities located far away due to their reduced physical abilities. The need to be close to a safe environment was similar for some of the informants in this study. However, some reported that they did leave their house. For example, one informant was helping with some horses, while others needed to take their dog to the dog groomer. Access to virtual support may play an important role here, as the informant could call the RN in the RCC at any time if anything were to happen.

The COPD-Related Conditions’ Impact on the Identity

For the informants, it was important to avoid discussing or being associated with their COPD condition by shifting the topic during the interviews. This aligns with a previous study where people with COPD were not interested in being identified solely by their illness [ 33 ]. They found that their identity related to their condition, termed “illness identity,” was affecting their roles and could potentially separate them from the social network or community. An additional contributing factor to social segregation was a sense of having a self-inflicted disease, leading to feelings of shame and guilt [ 33 ]. However, this was not evident in our data.

Most, but not all, of the informants appear to be able to cope with their diagnosis and condition. They try to continue the same kind of interactions and activities while considering their condition’s restrictions. As a result, individuals experience a sense of maintaining their own identity within their communities, yet occasionally feel the sense of lacking something. This can involve engaging in distant activities, such as joining a choir.

The Two Communities of Practice

The community of copd practice.

In relation to the community with its formal caregivers, the informants experienced a genuine interest from the RNs in their well-being and they provided them with support in an empathic way. This experience may be attributed to the PreCare environment, with free access to RNs 24/7, where they always kept an eye on the informants. This may explain the absence of “anxiety” in the interviews with the informants. These could be attributed to the RN’s ability to provide immediate support in response to changes in their health condition, with medication for deterioration accessible at home [ 32 ]. Anxiety, which often dominates the daily lives of individuals with COPD, is thus better managed [ 32 ]. Therefore, it is necessary for the RNs to be trained to instill confidence in individuals with COPD or other LTHCs, enabling them to feel more independent and socially active with the RCC, their equipment, and a medicine box readily available, thereby reducing anxiety and maximizing the benefits of their resources.

The informants’ immediate access to the RNs in the RCC appears crucial, as it enhances their self-efficacy and confidence in how their equipment aids them in managing deterioration.

However, despite feeling secure in their use of the equipment, the informants did not appear to be influenced by their ability for self-management and did not feel more empowered, likely due to experiencing the RNs as being paternalistic. The informants were unable to fully benefit from the virtual support environment due to the influence of the RNs and instead remained in a passive role.

RNs and other clinicians will need to be aware of how they communicate to facilitate a dialog that is not experienced as paternalistic, but rather as a coaching conversation.

The Community of Social Practice

In relation to their social communities, the extent of social relationships varied among the informants. The importance of a family community aligns with the findings of Nicolson and Anderson [ 32 ], who showed that family and relatives significantly influence the quality of life for people with COPD. Nicolson and Anderson [ 32 ] identified that COPD impacted how individuals connected with relatives and perceived their ability to fulfill their roles within the family. In contrast to the study by Nicolson and Anderson [ 32 ], our findings indicate that the informants’ family roles were not influenced by their COPD. They maintained their roles and continued normal interaction with their relatives and families.

Not all informants participated in social activities or were part of a local community. Those without support from friends and families experienced difficulties engaging in and finding motivation for social activities. They felt lonely when left alone in their homes, whereas those with a social network experienced loneliness to a lesser degree. This contrasts with another study [ 7 ], which found that loneliness was also a major issue for those with family support, such as spouses and friends [ 7 ]. Those who felt lonely because of their lack of participation in social activities found some comfort in the availability and contact with the RN, which to a certain extent reduced their experience of loneliness.

This underscores the necessity for RNs to possess skills in mental and social support, which should be included in the education programs for nurses.

Online resources such as patient portals and social media (eg, Facebook) can constitute a community for people with COPD. However, despite the availability of these platforms to our informants and their daily use of tablets, none of them considered these online opportunities in relation to their COPD condition. This may be due to various reasons. Some informants felt they had sufficient knowledge or were unsure how to interpret the overwhelming information on the internet. Additionally, they may have wanted to avoid exposing their diagnosis or involving others outside their close network [ 34 ]. The role of the PreCare environment and the RNs may substitute the need for a social media platform or COPD-related conversations on platforms such as Facebook.

When the informants do not participate in online communities, they may miss the opportunity to access new knowledge or learn from others with similar conditions. This lack of engagement can reduce their ability to manage their condition effectively and hinder their empowerment. Joining an online community and being actively involved can help transform newcomers into “super users” and “experts” [ 35 ]. These “online experts” can then help other members of the community, forming a virtual community of practice [ 25 ]. Thus, participants in the PreCare project may miss the opportunity to develop into experts through online activities but may instead develop this competence through participation in other communities or collaboration with the RNs.

Limitations

The study is based on 7 informants. This may be considered a limitation, as the relatively small number may result in some perspectives of people living with COPD not being expressed in the data. However, as all informants are exposed to the same PreCare environment, have the same diagnosis of COPD, and live within the same area, we find that the necessary number of participants to have enough power of information is met [ 36 ]. This is supported by the presence of common patterns among the informants and the alignment of the overall findings with the data obtained in the PreCare project. Further studies are needed to confirm our findings before they can be considered valid for scaling up and evaluating the impact of working with landscapes or communities of practice. This support aims to foster a sense of more active and independent living based on existing values.

Perspective

The findings suggest that education for RNs and other health professionals should focus on their roles as professionals while also acting as facilitators. They should avoid being paternalistic to create a space for the development of self-efficacy and self-management. A motivating factor will help develop self-efficacy and confidence, enabling people with COPD to be more socially active and encouraging them to pursue their desires. Health professionals play a key role here, as they can provide the means to help individuals become more active, thereby increasing their well-being.

Conclusions

When using digital health solutions, people’s needs, values, and preferences should be considered, focusing primarily on addressing the whole person rather than just the “illness.” This approach creates the best opportunity for individuals to maintain their daily activities and feel empowered. The 2 communities the informants take part must work together and will intersect in their daily lives. They should support each other, involving the needs, values, and preferences of the individuals, and ensuring that upcoming digital health services include and embrace situated learning to enhance people’s empowerment and self-management. Furthermore, new educational programs should be developed or considered to enhance the competencies of RNs who are involved in digital health services. This will provide the best opportunity for the 2 communities to collaborate and support the daily activities of people with chronic conditions.

Acknowledgments

The authors thank the PreCare Project for assisting with the recruitment of informants and the informants for participating in the study. The first author has received funding from Region Zealand. CWS, KB, and LK have been partly financed by the EU H2020 Research & Innovation Programme (grant agreement number 101016848) for the period 2021-2024.

Conflicts of Interest

None declared.

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Abbreviations

Edited by A Choudhury; submitted 27.09.23; peer-reviewed by H Salim, J Turnbull; comments to author 31.12.23; revised version received 29.04.24; accepted 24.05.24; published 21.06.24.

©Camilla Wong Schmidt, Karen Borgnakke, Anne Frølich, Lars Kayser. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 21.06.2024.

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 JMIR Human Factors, is properly cited. The complete bibliographic information, a link to the original publication on https://humanfactors.jmir.org, as well as this copyright and license information must be included.

• Open access
• Published: 21 June 2024

End-of-life care needs in cancer patients: a qualitative study of patient and family experiences

• Mario López-Salas 1 ,
• Antonio Yanes-Roldán 1 ,
• Ana Fernández 1 ,
• Ainhoa Marín 1 ,
• Ana I. Martínez 1 ,
• Ana Monroy 1 ,
• José M. Navarro 1 ,
• Marta Pino 1 ,
• Raquel Gómez 1 ,
• Saray Rodríguez 1 ,
• Sergio Garrido 1 ,
• Sonia Cousillas 1 ,
• Tatiana Navas 1 ,
• Víctor Lapeña 1 &
• Belén Fernández 1  

BMC Palliative Care volume  23 , Article number:  157 ( 2024 ) Cite this article

Metrics details

Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death.

Semi-structured interviews were conducted in Spain with cancer patients at the end of life ( n  = 3) and their family members ( n  = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.

Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.

Conclusions

A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

Peer Review reports

The concept of end of life reflects both the irreversible progression of a life-limiting disease, and a life expectancy of six months or less [ 1 ]. Cancer patients in the end-stage of the disease, facing end-of-life issues, undergo significant physical, psychological and social alterations, as do family members, whose lives and environment are drastically changed during this period. It is therefore of vital importance to improve the quality of life of all of those affected by this diagnosis. During this stage, numerous needs emerge regarding the care and well-being of the cancer patient and their caregivers which are not always acknowledged or identified. Recognition and awareness of these needs can ensure early access and comprehensive treatment for cancer patients with palliative care needs, while also meeting the needs of their caregivers [ 2 , 3 ].

In regard to patients, the literature provides some insight into the needs that emerge at this stage of the disease, yet there are still many areas that require further investigation. In a review by Wang et al. [ 4 ], which analyzed patients’ unmet needs in 38 studies, the authors identified seven major categories of needs. These included physical needs and symptom control, the need to maintain functionality and day-to-day activities, the need for information, psychological needs, social and financial needs, and spiritual needs. The relationship between various sociodemographic variables and patients’ unmet needs has also been studied. Several studies found that female patients had a higher frequency of unmet physical and psychological needs than male patients [ 5 , 6 ]. Similarly, patients with a high education level reported more unmet needs in physical domains, functionality, day-to-day activities [ 7 ] and information [ 8 ]. In addition, social needs appeared to a lesser extent in high-income patients [ 9 ]. Severe symptoms of emotional stress, the presence of anxiety and/or depression, a greater lack of problem-focused coping, and poorer quality of life of caregivers were identified as negative predictors of patient satisfaction [ 10 ]. Finally, when regarding primary caregivers, patients reported more unmet needs when their caregivers were male, young, or showed high levels of emotional distress [ 6 ].

For informal (or family) caregivers, the supportive care process is physically and psychologically challenging, especially when caring for patients with advanced cancer at the end of life [ 11 ]. However, assessing the unmet needs of caregivers remains an uncommon practice. Many family members, including those who do not view care giving as a burden, suffer from a wide range of problems, including sleep alterations, anxiety, depression, difficulty balancing caregiving and daily tasks, and financial burdens [ 12 ]. Wang and colleagues [ 4 ] found that caregivers had unmet needs regarding information about the disease and its treatment [ 11 , 13 , 14 , 15 , 16 ], as well as psychological [ 17 , 18 ], economic [ 19 ] and spiritual needs [ 20 ]. Researchers also reported that younger caregivers had a higher number of unmet needs than older caregivers regarding care, information and economic needs [ 13 , 14 ]. Caregivers with physical problems experienced a greater number of unmet needs. Similarly, family caregivers reported more needs when patients suffered from anxiety, depression, or poor physical performance [ 14 ]. Family members also experienced a need for clear and reliable information that would help them prepare for their loved one’s death and the grieving process [ 21 , 22 ].

There is a genuine necessity for studies that integrate patient and caregiver needs, in part to illustrate and conceptualize a unique family unit, given that the different elements that comprise this unit interact and impact on one another. The literature clearly shows that the unmet needs of patients can increase the physical and emotional burden of the caregiver [ 23 ]. In turn, caregiver issues are closely related to patient well-being [ 24 ]. The unresolved issues or unmet needs of caregivers will not only diminish their own quality of life, but also negatively impact on patients’ health outcomes [ 25 ].

Finally, it should be noted that few studies focus on the changing needs of patients and family members at the end of life, or of bereaved caregivers coping with grief. Our research aims to help fill this gap in the literature, using qualitative methodology to identify the unmet needs and potential barriers [ 3 , 26 , 27 , 28 ] encountered by these patients and their families, and thus provide greater insight into what the end of life is, as opposed to what it could and should be, for all those involved.

An exploratory descriptive qualitative study was carried out using semi-structured interviews with patients with end-stage cancer at the end of life and their family members. Fieldwork was conducted in May and June 2023. The Charmaz grounded theory approach to thematic analysis was implemented [ 29 , 30 ]. Categories of analysis have been generated inductively and deductively, following a grounded theory approach, and then grouped into themes. This methodology allows researchers to delve into areas of knowledge and reality from a novel perspective, making it possible to explore common perceptions and experiences as part of the subjective social structure of the participants. The study was designed and developed following the consolidated criteria for reporting qualitative research (COREQ) [ 31 ].

Participants

In this study, purposive sampling was used to identify participants, and obtain the maximum variation of the designed sample. This type of sampling is a strategy used to gather participants in a given context with expertise in the study phenomenon. Participants were recruited by health and social professionals through an association of cancer patients. The health professionals in direct contact with the participants informed them about the study and its objectives. Subsequently, and after signing the written informed consent sheet, the research team contacted the participants directly via e-mail or telephone call to confirm the interview. From an initial contact with 35 participants, the research team finally conducted 11 interviews with 15 participants. The variables chosen for the participants were: phase of the disease/after death (advanced, end of life, recent bereavement, bereavement after 6 + months), place of residence (rural, urban), age (< 65 or > 65) and gender. The sample also had ample experience with palliative care services, both at home and in hospital outpatient visits.

The final sample included 15 participants: 3 patients with end-stage cancer diagnosis and 12 caregivers who cared for terminally ill family members and experienced bereavement. A total of 10 semi-structured in-depth interviews were conducted, two of them in pairs (patient and relative), and another in a group composed of three caregivers. By including relatives of different ages, marital statuses and roles within the family, different narratives can be explored through the diverse perspectives, conflicts and connections collected.

Initially, 16 participants were proposed for the sample. However, theoretical saturation was reached at 15 participants, referring to the point in the research where new interviews added nothing novel or relevant to the study objectives [ 32 ], resulting in the final inclusion of 15 subjects. Table  1 shows the sociodemographic characteristics of these participants.

Data collection

All interviews were conducted online through a videoconferencing platform, except for two that were conducted by telephone at the request of the interviewees. They were conducted by two professionals with experience in qualitative research on healthcare and palliative care who had no previous contact with the participants in order to avoid bias in data collection. The interviews were based on a broad directive script, designed by a team of oncology psychologists and social workers with extensive experience in palliative care. This script was adapted to the context and profile of each person that was interviewed. Family caregivers were asked about the needs of the patients and as well as their own needs. The main topics discussed were: (1) Perceptions about end-of-life and palliative care; (2) Difficulties in the end-of-life process and the needs detected, both met and unmet; (3) The demands and proposals at professional and institutional level for the resolution of these needs (see Supplementary Materials). Interviews lasted an average of 45 min.

The interviews were audio recorded with the consent of the participants, and later verbatim transcribed and anonymized in their entirety. Written informed consent sheet was provided to participants by the professionals who made the recruitment. In addition, the researcher who conducted the interviews asked for oral consent to the participants right before the interviews. They were also provided the opportunity to ask questions and dispel doubts before starting the interview process. No payment was offered in exchange for participation in the study. Personal data and digital rights of participants were protected in accordance with the LOPDGDD 03/2018 [ 33 ].

Data analysis

To get an overview of the information before starting with the initial coding, 5 researchers of the team read the entire transcriptions repeatedly. The transcripts were then segmented into text units relevant to the analysis, which were subsequently read by all researchers. Finally, segments from the interviews were coded based on degree of relevance. A code tree was produced, combining closed categories previously discussed by the research group with categories that emerged inductively from the collected data. This tree was tested in the coding of certain interviews and adapted throughout the field research process to improve its scope and effectiveness. Data collection and analysis occurred concurrently. The information from the codes generated was compared with each other in order to create new categories. The codes were analyzed using both an inductive and a deductive approach that identifies similar, interrelated patterns and allows the theoretic categories described in the study to emerge from the raw data itself. Analytical rigor was assured through a rigorous process of peer review, since other researchers from the team were invited to review the initial analysis, in order to confirm the consistency of the findings and to identify and diminish potential biases. All the researchers agreed with the results of the coding process and the generation of the main categories. Data analysis was performed using ATLAS.ti version 9.

The results were divided into two main sections: the needs of people diagnosed with cancer at the end of life and the needs of family caregivers during this final phase of care.

End-of-life needs for cancer patients

The main results are shown in Table  2 . The needs of these patients are modified in accordance with disease progression and proximity to death.

Physical well-being

One of the main themes that emerged from participant responses was the need to maintain a sense of physical well-being. This set of needs is aimed at improving their quality of life by monitoring the symptoms of both the disease and its treatment. The main codes indicated by participants were the need to control pain and the adverse effects of medication, to find cures and clinical procedures to ensure quality of life, and to organize the administration of medication.

“That I, her daughter, have to act as a nurse, as I watch my mother dying and being told on the phone: ‘inject this, inject that’.” P12 .

The other codes regarding physical well-being were functional problems related to care. These needs include optimal rest and sleep, adapting diet and eating habits to allay weight gain or lack of appetite, and maintaining personal hygiene and physical activity.

“Well, you have to be aware of the circumstances. In terms of strength, it depends on the day…I’ve lost a lot of weight and I don’t sleep well, but I used to sleep very well. And this, of course, limits you.” P1 .

“I have my doubts about what the best diet is. The oncologist doesn’t know. I found a nutritionist, and it’s a little clearer now, but I think I lack information. Nothing is said about the diet…” P1 .

Emotional well-being

Another theme that concerned participants was their emotional well-being. Participants put a high priority on addressing emotional needs related to illness, dependency and death, as well as having access to assistance in effectively expressing and communicating these needs.

“Nobody talks about the psychological burden that this disease can place on the patient. How your life changes, all that it entails. The pain, going to the hospital continuously, and not knowing what will happen in the near future. More help is needed so we can understand how to relate to the disease rather than confront it.” P1 .

Participants also reported the need for the care and protection of their of identity, of their roles and purpose in life, as well as their self-image and self-esteem, all of which are frequent concerns of people facing the end of life.

“So it was very difficult for him … to be aware, and lose those roles and lose the role of doctor, lose the role of father, lose the role of person… in other words, to be sick person.” P6 .

Other relevant codes included the need to maintain affective relationships by spending quality time with your loved ones, and getting support to carry out fulfilling activities, hobbies and everyday pleasures.

“I brought her home, with her granddaughter, who she was mad about, and my kitten. My mother has always loved my cat. When I brought her home on the first day in the wheelchair, the cat climbed onto her lap and gave her a kiss. And now, on her deathbed—the last days of her life—my cat will not leave her side.” P12 .

Social well-being: adapted living space and mobility and economic resources

Most of the participants reported that a well-adapted living space was essential for providing comfort and quality of life at the end of life. This corresponds to the need to adjust the living environment to the patient’s physical circumstances during the end-stage of the disease.

Participants prioritized the following codes: the need for material resources that could improve the patient’s quality of life (medical equipment and supplies, hygiene products, etc.), domestic mobility (wheelchairs, stair lifts, etc.), and comfortable living spaces adapted to the patient’s physical needs.

“Now we must hustle and bustle with a wheelchair, because I cannot walk. We requested a wheelchair and the doctor prescribed it for me, an electric wheelchair. They prescribed it for me, they accepted it and today a letter has come, saying it has been denied.” P2 .

“I have a bathtub and I couldn’t afford it… Also, I pay rent, so I couldn’t replace the bathtub with a shower. I had no time, no disposition, no money. I ultimately had to buy an orthopedic chair so I could shower her in the bathtub” P12 .

Another important aspect of social well-being highlighted by the participants was the need to have access to professional resources that cover daily tasks, mainly through the hiring of professional caregivers.

“And the aid they gave was quite small, that’s also something that could, that should be considered, right? Above all, people who need care, a lot of care. […] In the end, it’s true that you need 24 hours, 7 days a week.” Family Group, P14 .

Information and autonomy in decision-making

Needs related to informed decision-making are associated with a willingness to ensure patient inclusion and autonomy in decisions that are made throughout the end-of-life period. The interviewees emphasized that they often felt as if healthcare professionals were not honest and forthright when sharing information with them. Yet they need this information to cope with doubts and make informed decisions, information on the prognosis of their disease and therapeutic options, legal and bureaucratic procedures, psychological and social resources, and shared experiences of other patients. In addition, they expressed the need for the patient’s will and preferences to prevail.

“Learn more about the process. Like: “The degeneration will progress more and more.” Yes, but how will this degeneration take place? What exactly should I expect? I mean, I know they can’t give me a timeline, I understand that. Learn how the disease really works. You search the Internet, and then have to hope that your search is right.” P9 .

End-of-life needs for family caregivers

The daily tasks of a family caregiver together with the challenges that arise during end-of-life care for a cancer patient can overwhelm the caregiver. In most cases, caregiver overload causes severe stress and physical, emotional and mental exhaustion. Family caregivers must learn to balance caring for their loved ones with caring for themselves. This includes organizing work, home, and leisure activities, improving time management, and building a strong internal support system. Family member interviews also revealed a need for greater awareness of their own specific needs, which are often overlooked. These main results are shown in Table  3 .

Personal health and well-being

Family caregivers reported that they often overlooked their health, neglecting their nutrition and adopting inadequate sleep patterns. Those suffering from an illness also noted greater neglect of their own medical needs and treatment.

“From the time I woke up at 7:00 or 8:00, I didn’t stop, until I went to bed at 12:00. I’ve already lost a lot of weight from the stress. I’ve always said that I have to take care of myself, that I can’t be foolish and neglect myself, because if I fall, we all fall and I have 3 people under my care.” P12 .

Caregivers in the study also highlighted the need for assistance in minimizing uncertainty and emotional distress. They reported feeling overwhelmed with their caregiving responsibilities, which brought on more pressure and feelings of guilt.

Other emotional needs included managing their fear of losing a loved one and coping with grief and life changes after the death of the patient.

“I had prepared a letter for my father, because I hadn’t been capable of saying goodbye yet.” P6 .

Caregiver overload and work-life balance

The main difficulty that family caregivers faced was achieving a healthy balance between work and personal life. The combination of working and family responsibilities (of both the patient and other family members) can virtually do away with a caregiver’s rest and free time.

“My father was on medical leave because of anxiety, until my mother died and then he went back to work. Until it happens to you, you don’t realize how much a person needs to stop working, and that it’s not a whim. In other words, you either stop working or caregiving.” P10 .

The participants emphasized the need for caregivers, in this case, mainly family members. Great importance was given to the possibility of having a formal and informal support network, especially at an emotional level and also to collaborate with daily caregiving tasks.

“ The end was appalling, especially because of the work-life balance. It was very burdensome to have the illness at home. I managed to do it because my father was there, otherwise I wouldn’t have been able to go out […] because I couldn’t disconnect at home .” P10 .

The objective of this study was to explore the needs of people with cancer at the end of life and the needs of their family caregivers. Its novelty lies in its ability to provide relevant information on the unmet needs of these individuals in a qualitative manner during the end-stage of the illness.

There is limited research on this period given the complexities of reaching out to the cancer population and their loved ones at such a difficult time in their lives. Furthermore, there is the complex task of incorporating the experiences of both patients and family members into a single study and viewing them as a unit that interconnects with the social, economic and institutional reality in which they live.

Based on the needs expressed by the participants, our findings suggest that numerous unmet needs may exist among cancer patients and informal caregivers during the end-of-life period. The complexity and magnitude of the challenges they face during this phase of cancer contribute to a significant array of needs. Although there is diversity in the identified needs among patients and family caregivers, there are also a remarkable number of these needs overall. These findings are consistent with results from similar studies conducted on cancer patients in other countries during earlier phases of the end of life.

In terms of the physical well-being of the cancer patient, our findings support other studies in which the need for symptom control, mainly pain and fatigue [ 5 , 13 , 34 , 35 , 36 , 37 ], is considered a priority. Another primary concern is the need for rest and adequate sleep. It should be noted that while caregivers usually attend to the needs of the patient regarding nutrition and hygiene, most of them express a sense of over-delegation when it came to these tasks, as well as a lack of preparation for carrying them out.

The need for emotional well-being is of particular concern to the interviewees, constituting one of the primary sources of vulnerability at the end of life. This phase of the disease is characterized by fear and uncertainty and the need to come to terms with impending death. Priority is given to managing emotions related to illness, dependency, dying and death. Patients also stress the importance of spiritual needs during this period, as they face end-of-life issues and reflect on the purpose and meaning in their lives. Preserving one’s identity, as well as one’s self-image and self-esteem also contributes to emotional well-being for people nearing the end of life. These findings support previous research where patients expressed a fundamental need for managing psychological distress [ 6 , 7 ]. A systematic assessment of the emotional needs of these patients would help identify appropriate coping strategies to reduce emotional distress and lessen its burden on caregivers.

Participants in our study, as in other research, emphasize the unmet need for information that would help them make decisions and express their preferences for end-of-life care [ 7 , 8 , 13 ], thereby ensuring control over their care while easing the burden of decision-making for their caregivers. These findings highlight the need to improve communication between patients and their healthcare providers. By learning and responding to what their patients want to know, these professionals can improve the patient’s understanding of their circumstances and the options available to them at this critical period in their lives.

Regarding social needs, our data show that a well-adapted living space that provides comfort and mobility is vital for dignity at the end of life, as is being able to choose to stay at home rather than move to a hospital. Participants indicated that the main barriers to satisfying these needs were a lack of economic resources to refurbish their home or obtain technical and/or orthotic and prosthetic devices (wheelchair, adjustable beds, etc.) to improve their quality of life. It is necessary to provide assistance and information on adapting the home and devices that facilitate the patient’s mobility. Similarly, more information should be made available regarding economic aid or funds that may be requested to offset these costs and the loss of income resulting from the illness.

Finally, findings on the needs of family caregivers show the challenges that arise during end-of-life care for a patient with cancer cause an overload, which in most cases leads to severe stress and physical and psychological exhaustion. Family caregivers need to learn how to improve their work-life balance. This includes organizing work, home, and leisure activities, improving time management, and building a strong internal support network.

This study contributes to the relatively small number of publications on patients with cancer and their caregivers at the end of life. In addition, this is the first study carried out in Spain that explores the needs of cancer patients in palliative care and their families based on their own personal experiences. The primary strength of our research lies in the inclusion of end-of-life patients nearing death who had diverse experience with the services provided during end-of-life care. Our main findings also corroborate previous research, while providing a more in-depth understanding of these patients’ needs and their connection to the needs of family caregivers. However, while it was possible to saturate the resulting codes theoretically and empirically, our limited sample size prevented the findings from being generalizing. Nevertheless, these results support the growing call for a more in-depth understanding of the needs of this vulnerable population. Only with this first-hand knowledge any real and effective change can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

Data availability

The dataset generated and analyzed during the current study is not publicly available because individual privacy could be compromised but is available from the corresponding author on reasonable request.

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Acknowledgements

We are exceptionally grateful to the participants and professionals involved in this study, without whom we could not share the results of this research.

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

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Conceptualization and design: M.L-S., A.Y-R., B.F.; Acquisition, analysis and interpretation of data: M.L-S., A.Y-R., B.F.; Drafting of the manuscript: M.L-S., A.Y-R., A.F., B.F.; Critical revision of the manuscript for important intellectual content: All authors. All authors have read and approved the final version of this manuscript.

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Correspondence to Mario López-Salas .

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According to the Ethics and Good Governance Committee of the Spanish Association Against Cancer (AECC), this research did not require approval by a medical research ethics committee. Nevertheless, the study complied with the principles of the 2013 Declaration of Helsinki. Each participant was adequately informed of the aims and methods of the study and informed consent was obtained from all individuals to participate in this study. No personal information has been used and the individual’s identity has been protected by removing any personal identifiers from the data. Codes were designated to the respondents to guarantee their anonymity.

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López-Salas, M., Yanes-Roldán, A., Fernández, A. et al. End-of-life care needs in cancer patients: a qualitative study of patient and family experiences. BMC Palliat Care 23 , 157 (2024). https://doi.org/10.1186/s12904-024-01489-1

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Uncovering multi-level mental healthcare barriers for migrants: a qualitative analysis across China, Germany, Netherlands, Romania, and South Africa

• Alina Ioana Forray 1 , 2 ,
• Ovidiu Oltean 1 ,
• Saskia Hanft-Robert 3 ,
• Rowan Madzamba 4 ,
• Andrian Liem 5 ,
• Barbara Schouten 6 ,
• Christine Anthonissen 7 ,
• Leslie Swartz 4 ,
• Răzvan Mircea Cherecheș 1 , 8 ,
• Sanna Higgen 3 ,
• Brian J. Hall 9 &
• Mike Mösko 3 , 10  

BMC Public Health volume  24 , Article number:  1593 ( 2024 ) Cite this article

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Forced displacement is a significant issue globally, and it affected 112 million people in 2022. Many of these people have found refuge in low- and middle-income countries. Migrants and refugees face complex and specialized health challenges, particularly in the area of mental health. This study aims to provide an in-depth qualitative assessment of the multi-level barriers that migrants face in accessing mental health services in Germany, Macao (Special Administrative Region of China), the Netherlands, Romania, and South Africa. The ultimate objective is to inform tailored health policy and management practices for this vulnerable population.

Adhering to a qualitative research paradigm, the study centers on stakeholders’ perspectives spanning microsystems, mesosystems, and macrosystems of healthcare. Utilizing a purposive sampling methodology, key informants from the aforementioned geographical locations were engaged in semi-structured interviews. Data underwent thematic content analysis guided by a deductive-inductive approach.

The study unveiled three pivotal thematic barriers: language and communication obstacles, cultural impediments, and systemic constraints. The unavailability of professional interpreters universally exacerbated language barriers across all countries. Cultural barriers, stigmatization, and discrimination, specifically within the mental health sector, were found to limit access to healthcare further. Systemic barriers encompassed bureaucratic intricacies and a conspicuous lack of resources, including a failure to recognize the urgency of mental healthcare needs for migrants.

Conclusions

This research elucidates the multifaceted, systemic challenges hindering equitable mental healthcare provision for migrants. It posits that sweeping policy reforms are imperative, advocating for the implementation of strategies, such as increasing the availability of language services, enhancing healthcare providers’ capacity, and legal framework and policy change to be more inclusive. The findings substantially contribute to scholarly discourse by providing an interdisciplinary and international lens on the barriers to mental healthcare access for displaced populations.

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By the end of 2022, global forced displacement had reached a staggering 112 million individuals due to reasons spanning from persecution and conflict to severe human rights infringements and disruptions in public order. Breaking down the figures, refugees accounted for 35.3 million. Furthermore, 62.5 million internally displaced persons, 5.4 million asylum-seekers, and another 5.2 million people necessitate international protection, emphasizing the need for migration-responsive global health policies. Out of the displaced populations, 76% were hosted by low- and middle-income nations, while higher-income countries only provided asylum to 20% of the total [ 1 , 2 ]. WHO’s report on refugee and migrant health delineates the adverse health outcomes this population frequently experiences, driven by subpar living, access to healthcare, and working conditions [ 3 ].

Migration is a key determinant of health, profoundly influencing healthcare access and interactions with health systems. The inclusivist approach defines “migrant” as an umbrella term and consistent with the International Organization for Migration’s definition [ 4 ]. This term encompasses all forms of movement, whether internal or international, temporary or permanent, and for a variety of reasons. It includes legally defined categories, as well as those not specifically defined under international law.

In contrast, the residualist approach distinguishes between migrants and refugees, acknowledging that refugees face unique challenges and legal statuses [ 5 ]. Refugees, as a specific subgroup within the broader category of migrants, are more likely to have experienced trauma and exhibit higher rates of mental illness compared to other migrants [ 6 , 7 ]. Attitudes towards refugees and migrants also differ, with macro-level factors significantly influencing perceptions of refugees [ 8 ]. The historical separation of the refugee and migrant categories has implications for their protection and access to durable solutions [ 9 ].

Despite these distinctions, both groups share certain health needs, including communicable and non-communicable diseases, mental health issues, and social problems [ 10 , 11 ]. Migrants and refugees face common challenges such as language and cultural barriers, low health literacy, social exclusion, and unfamiliarity with host country health systems, leading to suboptimal primary care usage and increased reliance on emergency services [ 12 , 13 ]. Mental healthcare provision for migrants and refugees is particularly challenging due to complex barriers and polarized attitudes among healthcare professionals [ 14 ]. Both groups are vulnerable to language and cultural barriers and social exclusion, exacerbating their pre- and post-migratory trauma, anxiety-related disorders, stress, and depression [ 15 , 16 ]. Factors such as trauma, lack of social support, and inadequate housing further hinder their adaptation and acquisition of necessary social and cultural capital in host countries [ 17 ]. Structural barriers to healthcare include long waiting lists, financial constraints, lack of knowledge about the healthcare system, language barriers, and poor trust [ 18 , 19 , 20 ]. To enhance the mental well-being of migrants and refugees, it is crucial to offer tailored services appropriate at different stages of resettlement. Economic stability should be improved in alignment with social welfare benefits throughout the resettlement journey. As migrants and refugees become more settled, interventions should address feelings of isolation and stress factors related to adapting to a new life in the host country [ 21 ].

In this study, we adopted an inclusivist approach, aiming to examine access to mental healthcare services regardless of individuals’ legal status, motivations to migrate, migratory status, and migratory experiences while taking into consideration the distinctions and similarities in accessing mental healthcare for both groups in a variety of settings.

Migrant settlement and integration are complex and nonlinear processes where individuals acquire the necessary cultural, social, and educational capital to adapt and thrive in the host society [ 22 ]. While the concept of integration is debated and contested [ 23 ], most scholars agree that acquiring country-specific skills and social capital are essential for accessing economic opportunities, housing, healthcare, and education [ 24 , 25 ]. This process is often hindered by challenges faced both during migration and throughout settlement in the destination country [ 26 , 27 ].

Access to healthcare for migrants who do not speak the primary languages used in host countries’ healthcare systems is compromised in various ways. This includes misdiagnosis, higher rates of non-adherence to healthcare advice and treatments, cultural mismatches between patients’ understanding of illness and the healthcare system’s understanding, and legal and bureaucratic difficulties [ 10 , 28 , 29 ]. These issues come into sharper focus in the context of mental health care provision among migrants, where clear communication between a clinician and a patient is crucial for effective care [ 30 ] and where trauma-related mental health problems are prevalent but often overlooked [ 31 ]. In this context, questions of trust in the healthcare system, cultural appropriateness, stigmatization, and social exclusion are significant concerns that need to be addressed to improve the quality of care for migrants [ 32 , 33 , 34 ].

Language barriers affect access to healthcare services and the outcome, as many migrants are unable to communicate in the official language of the host country [ 35 ]. To overcome this, migrants are often in difficult situations, having to revert to relatives to provide informal interpretation during patient encounters [ 36 , 37 ]. Practices of informal interpreting can breach the confidentiality of the medical act, hamper the trust in the healthcare system, and weaken the effectiveness of medical treatment [ 38 ]. Strategies like cultural mediation, professional interpretation, translation of health information, collaboration between different agencies, guidance, and training for healthcare providers have been implemented to address communication barriers for refugees and migrants in healthcare settings. Incident reporting systems can also be promoted to identify problems with strategy implementation and finding solutions [ 39 ].

One WHO report identifies several models of care deployed by countries to adapt healthcare systems for refugees and migrants. The review acknowledges that healthcare worker behavior is influenced by the overarching healthcare system and aims to contextualize the settings and models under which they interact with refugee and migrant populations [ 40 ]. WHO’s report on the health of refugees and migrants highlights two crucial gaps: the lack of comparable, cross-country data and the absence of migratory status-specific data within global health datasets [ 3 ]. In addition, The Global Competency Standards for Health Workers in Refugee and Migrant Health developed by WHO underscores the necessity of a skilled and adaptable health workforce to meet the diverse needs of displaced populations. These standards aim to ensure a minimum level of competency tailored to the unique health challenges faced by refugees and migrants, such as language barriers, cultural differences, and restricted access to mainstream healthcare [ 41 ].

The aim of our study is to conduct a comprehensive qualitative analysis to uncover the barriers migrants face in accessing mental healthcare services in five distinct settings: Germany, the Netherlands, Romania, China, and South Africa. This research focuses on understanding the impact of language barriers, alongside other cultural and institutional obstacles, within the healthcare systems of both well-resourced and more modestly resourced countries. Through semi-structured interviews with a diverse group of stakeholders, including healthcare providers, policymakers, administrative staff, and professionals from migrant support organizations, our objectives are twofold: (1) To identify and categorize the specific barriers to access and treatment of adult migrants within mental health services in both well-resourced healthcare systems and those with more modest resources; (2) To explore how language barriers exacerbate these challenges and affect healthcare access and treatment outcomes for both patients and healthcare providers. This nuanced understanding will contribute to the formulation of policies and practices that enhance the accessibility and quality of mental healthcare for migrants, ultimately improving public health outcomes for this vulnerable group.

This study examines the cross-cultural context of five different countries, namely Germany and the Netherlands (high-income countries and common migrant destinations), Romania (a high-income country in Europe emerging as a migrant destination), and two upper-middle-income countries, China and South Africa (both of which host substantial migrant populations). By focusing on countries across Europe, Asia, and Africa, we explore barriers to care beyond the commonly studied European settings [ 26 , 42 , 43 ]. Our study can broaden the narrative on migrant health needs and enrich our understanding of the challenges that migrants face in accessing healthcare, as well as knowledge of the diverse experiences of migrants and the complexities of their interactions with healthcare systems. Our approach highlights the crucial role played by diverse varieties of barriers, especially language discordance, that hinder access to mental health for all individuals who are navigating their lives in a new country, regardless of their motives for migration or the intricate details of their migration experience.

Firstly, in all the studied countries, language barriers stand as a significant issue affecting migrants’ healthcare. In the Netherlands, 10% of residents predominantly use non-Dutch languages at home, exacerbating healthcare challenges [ 44 ], while Germany, with Europe’s largest foreign-born population, faces similar difficulties; many migrants lack proficiency in German even after prolonged residency [ 45 ]. Similarly, Romania’s rapidly growing migrant population from Southeast Asia often struggles with language barriers [ 46 ]. South Africa’s linguistically diverse migrant populace [ 47 ] and Macao’s surge in migrant workers highlight a similar trend [ 48 ].

Secondly, current healthcare systems in these countries offer insufficient or fragmented solutions to address the barriers faced by migrants. For example, budget cuts in the Netherlands led to a decline in formal interpretation services [ 49 , 50 ]. In Germany, the lack of multilingual professionals and insufficient interpreter coverage limits migrants’ access to mental healthcare [ 51 ]. Romania’s healthcare system often relies on informal interpreters, usually accredited social workers from NGOs, leading to inconsistency and potential inaccuracies in the translation [ 46 ]. South Africa and Macao (China) lack formal healthcare interpreting services altogether, causing service delivery complications [ 47 , 48 , 52 ].

Thirdly, there have been reported disparities in access to mental healthcare for migrants across these countries. Germany provides extensive mental health services through outpatient care by psychiatrists, neurologists, and psychotherapists and inpatient care in specialized hospitals, while the availability of ambulatory psychotherapeutic care has been recognized as a key problem in mental healthcare in Germany, with long waiting times for therapy and significant differences between regions [ 53 ]. For refugees and asylum seekers, Germany employs a phased care model where initial care at reception centers is limited to basic healthcare. After 6–12 weeks, access is restricted to acute and emergency care, with full healthcare access granted only to those with long-term residence permits (12–48 months) [ 40 ]. Similarly, in the Netherlands, a stepped-care model with general practitioners as gatekeepers is in place, with recent legislation enhancing support for residence permit recipients but excluding those in the process of obtaining a permit [ 54 , 55 ]. The mental healthcare system in Romania is predominantly hospital-centric, with limited outpatient services [ 56 ]. Outpatient psychotherapeutic services are rarely covered through statutory insurance and often present bureaucratic challenges, complicating access for both the general population and migrants [ 57 ]. Migrants must enroll in the statutory health insurance scheme for comprehensive access to medical services other than emergency care [ 58 ]. In South Africa, while primary mental healthcare is available to migrants, higher-level care is hindered by means of testing (which calculates the fee depending on the patient’s income), language barriers, and discrimination [ 59 ]. Furthermore, mental health services are primarily centralized in secondary hospitals and specialized facilities, with limited resources allocated to other levels of care, especially at the community level [ 60 ]. Macao (China) integrates mental health services within its broader healthcare system [ 61 ], but their effectiveness is limited by cultural factors and underdeveloped infrastructure [ 62 ]. Our findings align with previous reports from the European Union, which highlighted that only ten Member States have relevant national strategies or policies addressing migrants’ mental health, and just six include it under national health insurance [ 55 ]. These disparities underscore the need for targeted policies to improve mental healthcare access and inclusivity for migrants.

Finally, each of the five countries has become important destination countries for migrants in their respective regions. Germany currently has the largest foreign-born population in Europe [ 63 ]. At the same time, in the Netherlands, approximately one person in four was born abroad or has at least one parent born abroad [ 64 ]. Romania has become one of the fastest-growing destination countries for migrants in Central and Eastern Europe [ 46 , 65 ], South Africa has become one of the most important host countries for migrants in Africa [ 47 ], and Macao (China) has become an important destination for international migrants from Southeast Asia [ 66 ].

Informed by Bronfenbrenner’s Ecological Systems Theory [ 67 ], which posits that an individual’s development is influenced by their interactions within a series of nested environmental systems, this qualitative research delineates the multilayered interactions between migrants and the healthcare system, encompassing opinions of stakeholders from the microsystem, mesosystem, and macrosystem. Utilizing a purposive sampling strategy, participants from five distinct countries were engaged. Data were systematically gathered using semi-structured interviews and subsequently interpreted through thematic content analysis. The research employed a mixed deductive-inductive approach, anchored initially in a thorough review of existing literature on mental health care barriers for migrants. This foundation informed the development of semi-structured interview guides. This strategy allowed the research team to start with established evidence and then move beyond, uncovering new insights from the participants’ experiences and expertise. This research followed the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines for qualitative studies [ 68 ].

Semi-structured interviews explored barriers that impact access and treatment of migrants with mental health needs in the healthcare systems of Germany, Macao (China), Romania, South Africa, and the Netherlands. Participants were selected through purposive sampling. The study involved 42 semi-structured interviews conducted between May and September 2021 with persons working in organizations and institutions that comprise the healthcare system and migrant support institutions in the selected countries (Table  1 ).

Participant selection was purposefully strategized to encapsulate three primary ecological levels. At the Macrosystem level, 14 individuals who exert influence on cultural values and policies were recruited. The Mesosystem was represented by 13 stakeholders functioning as intermediaries between individual experiences and larger societal structures. Finally, the Microsystem included 15 participants, comprising individuals with lived experiences and those who interact directly with them, including social and healthcare workers. Participants were identified and recruited through professional networks, ensuring a comprehensive representation of diverse perspectives across the ecological spectrum. (Table  1 ).

All interviews were conducted by trained personnel proficient in both the native language of the participants and in English. Interviews were conducted via online platforms, telephone, or in-person in private settings, tailored to participant preferences and ensuring confidentiality and comfort. The duration of each interview varied between 30 min and 1 h. The interview questions focused on the general and language barriers for migrants who suffer from mental health problems concerning access and treatment in the healthcare system, the consequences of barriers, existing resources, and emergent practices employed to overcome the barriers they encountered, and their disadvantages and advantages (Table  2 ). Audio-visual data were collected during semi-structured interviews, transcribed verbatim, and personal identifiers removed for privacy. Transcripts were independently reviewed and translated into English by bilingual researchers to maintain the integrity and nuance of the original dialogues.

Data analysis was guided by the principles of thematic analysis, which was congruent with the framework proposed by Kuckartz [ 69 ]. During the planning phase of this research, we established a set of questions grounded in existing evidence related to mental health care access for migrants. This deductive phase laid the groundwork for our inquiry, guiding the adaptation of a thematic matrix specifically crafted to highlight the unique and common challenges encountered across different countries. To facilitate this process, we utilized the online platform Miro for collaborative mind-mapping sessions. These virtual workshops enabled our team to systematically identify, organize, and visually map the key themes and sub-themes relevant to each country, as well as those prevalent across multiple settings. Following this structured organization, we entered an inductive phase, aiming to delve deeper into the data to discover emergent sub-themes and coding patterns that were particularly informed by our participants’ insights. This phase allowed us to extend our analysis beyond the initial framework, uncovering nuanced aspects of the migrant healthcare experience. The organization and synthesis of our findings were meticulously conducted using Microsoft Office Excel, which served as an invaluable tool for managing our data efficiently and transparently. Within this structured environment, we carefully selected representative quotes that vividly illustrated each theme, thereby grounding our analysis in the authentic voices of our participants.

The thematic analysis revealed three major themes: language and communication barriers, cultural and social barriers, and systemic barriers. The report highlights the main and subthemes that act as barriers in each country, which are presented in Fig.  1 . This figure offers a summary of the most prominent themes that emerged in each country, along with specific details for each theme. However, it is important to note that this representation is not exhaustive and is intended to provide a general overview of the findings.

Identification of major and minor themes regarding barriers that emerged from the thematic analysis

Theme 1: Language and communication barriers

The analysis revealed that language discordance constitutes a major barrier in all countries. The lack of funding for professional interpreters and the lack of multilingual skills of healthcare professionals were common sub-themes. Various strategies are used to overcome language barriers, including professional and non-professional interpreters, digital tools, scarce language resources, and multilingual staff.

Professional interpreter services: availability, use, and funding challenges

Across all countries, the inadequacy or complete absence of professional interpretation services in the healthcare system emerged as a common issue. This was especially pronounced in China, Romania, and South Africa, where no participant reported working with professional interpreters.

Germany and the Netherlands had professional interpreters available, but financial limitations hindered their widespread use. In Germany, one healthcare provider explained that the absence of legal regulations concerning interpreters in healthcare exacerbates the funding problem:

“There is no regulation of interpreting. There is no government or cash health funding, which means it’s a funding problem [P04, Chief doctor (psychiatrist), Clinic for Psychiatry, Germany].”

The financial barrier was also noted in the Netherlands as a significant issue. A participant stated:

“The very basis, the crux, is that those interpreters are financed. Suppose there is no arrangement for using interpreters from a financial point of view. In that case, the financial aspect is already a barrier [P01, Human Rights NGO Campaign Leader, The Netherlands].”

A participant in South Africa brought up the issue of insufficient funding for language services and how discriminatory attitudes affect the allocation of healthcare resources. This situation calls for a delicate balance to be struck in ensuring adequate interpreter services while not creating resentment among locals who may perceive migrants as being favored. It highlights the need to address both financial constraints and biases that hinder the fair distribution of services to all communities. This sentiment was captured in the statement:

“ What kind of resources should one be putting in / to ensure that (i.e., having suitably equipped interpreters? … people could get quite upset / if they felt that foreigners are given more services and more privilege than they are as South Africans [P01, Government Health Researcher, Former Mental Health Department Director, South Africa] .”

In Romania, health institutions struggle to offer translation and interpretation services, especially for migrants who cannot communicate in any of the international languages spoken by the medical staff:

“ The problem comes from the inability of health institutions to offer translation services, for example, those migrants who do not speak any of the languages medical staff could handle [P01, Former State Secretary, Romania ].”

A social worker in China highlights this disparity through her personal experience:

“ Yes, but one time, the people in the hospital asked me [a social worker from an NGO], “Oh, can you help me to explain, to translate it to them.” And I said, “Isn’t it that you guys have an expert translator in the hospital? … And she answered me, “Huh?” (laughs). They don’t have, they [nurses and doctors in the hospital] have no idea… [P07, NGO Staff Member, Macao (China)] .”

Use of non-professional interpreters and associated challenges

The lack of professional interpreters has led to a reliance on non-professional interpreters or multilingual staff. In Germany, this expectation causes scepticism among healthcare providers, as noted by one interpreter:

“ There is no interpretation. They should always bring interpreters. […] Who always has the time to go along somehow every time? [P07, Interpreter, self-employed, Germany] .”

In South Africa, healthcare providers often resort to using multilingual individuals available in the hospital, such as nurses, cleaning staff, security guards, or even family members. This practice, as one participant noted, raised concerns over professionalism and accuracy:

“I think they / are not professionally trained to be translators or interpreters. They are used because they are accessible in the hospital and are able purely because they speak both languages [P05, Public Health Specialist, South Africa].”

This approach raises concerns about the accuracy, professionalism, and confidentiality of translation. Another interviewee from the medical field pointed out that:

“Employees are misused as language mediators or interpreters… it is not good [P01, Federal Migration, and Refugee Official Germany]” , suggesting that using untrained staff as interpreters can jeopardize the quality of healthcare communication.

Similar situations are observed in the Netherlands and China, with an added concern about patient privacy, limitations in sharing necessary health information, and trust, as participants shared:

“The patient’s personal story is hampered because the patient is afraid that his/her story will be known by all [P03, Chair of Migrant Patient Organization, The Netherlands].” “ If the interpreters or translators are from family members or their relatives, you may not be getting all of the information that you want; the family members maybe trying to hold back some of the information, some information that they don’t talk about in their culture … and if you’re dealing with someone from Asian culture and talking with family members or interpreters for an elderly patient, the family member may not want the elderly patient to know how serious the disease is [P05, NGO Executive Member, Macao (China)] .”

Using children as interpreters was particularly problematic, leading to potential trauma, disruption of their education, and ethical issues, as one respondent from the Netherlands highlighted:

“ I’m baffled how very much - even caregivers who have worked a lot with migrants -, how very much they are just completely silent about what it does to a child when it has to interpret, for example, and that it impacts the quality, that it impacts the parent-child relationship, that the child doesn’t go to school [P01, Human Rights NGO Campaign Leader, The Netherlands] .”

In Romania, a psychotherapist underlined the emotional toll on non-professional interpreters, stating:

“Many times, I had to do a prior training with the translator, [followed by] another session… in which I was trying to ease him of that load [P04, Psychotherapist, Romania].”

In Romania, one additional contribution to the lack of linguistic support is the missing assistance from embassies, as noted by one head of a psychiatric unit:

“ If the Embassy does not offer them support and does not offer us support to provide us with a professional translator to help us in the interview, then things get delayed, and the psychiatric consultation and the patient’s care are delayed [P02, Psychiatry Unit Head, Romania] .”

The results show that using informal interpreters brings up concerns about the role of interpretation. As two respondents from South Africa explained:

“ People (interpreters) very often feel that ah, they are being extremely helpful to you, in saying more to the person, than you have actually said [P02, Founder and Chief executive at mental health peer network, South Africa] .” “ I think interpretation still doesn’t mean counseling [P05, Public Mental Health Specialist, South Africa] .”

The interviews revealed an overarching lack of professional interpretation services across healthcare systems, leading to improvised, suboptimal, and potentially unethical solutions. The common issues identified were a lack of funding and regulations and the use of untrained individuals as interpreters. The use of non-professional interpreters is being deployed to address language barriers in healthcare settings across these countries, and drawbacks of this approach include confidentiality breaches, trust erosion, emotional distress, and ethical dilemmas, underlining the importance of adequately trained professional interpreters. The findings indicate a clear need for policies to regulate and fund professional interpretation services.

Multilingual proficiency of healthcare providers

The multilingual proficiency of healthcare providers (HCPs) varied across countries, impacting patient care and presenting distinct challenges. These findings reveal disparities in healthcare communication that are influenced by language barriers, multilingual provider availability, and linguistic skills of healthcare providers. While certain strategies, such as consulting in English, have been proposed to overcome these obstacles, the effectiveness of these approaches remains controversial.

In Romania, mental health professionals typically possess proficiency in other languages, aiding communication with patients who can converse in these common tongues. As a psychiatrist stated:

“I mean that mental health professionals are good speakers of languages of international circulation (…) We can handle people who come to the clinic and speak one of the languages of international circulation [P03, Psychiatry Unit Head, Romania].”

Contrastingly, Germany faces a systemic issue regarding the availability of multilingual therapists. An interview participant voiced this challenge, saying:

“ In terms of access, it is still difficult that we have very few multilingual therapists [P01, Federal Migration and Refugee Official Germany] .”

In South Africa, healthcare communication is uniquely impacted by the intersectionality of language, ethnicity, and race. A disparity in multilingual skills along racial lines is evident, with one participant highlighting that white professionals, who form a larger proportion of qualified practitioners, often lack fluency in local languages:

“ As we know, we still have far more / uhm / white people who are qualified and don’t speak many of the local languages [P02, Founder and Chief Executive at mental health peer network, South Africa] .”

To mitigate language barriers, many South African HCPs propose using English as a lingua franca. However, this approach is contested by those who believe that patients struggle to express their health concerns fully in English. As one participant from South Africa stated:

“My own language / I would be in a position to narrate and describe how everything started using English, it is very difficult for me to explain [P10, Co-ordinator, Migrant Support Centre and Refugee, South Africa].”

This problem extends to the diagnostic process, where a participant emphasized the difficulty of accurate diagnosis with patients speaking broken English:

“Although many patients can speak English, yet it is very much, you know, broken English (…) which interferes with gaining rich or very accurate information so that it becomes challenging to make a diagnosis [P08, Director at University Health Communication Centre; Associate Professor Speech Therapy, South Africa].”

The Chinese context highlights substantial language barriers for both healthcare professionals and patients. A participant from China highlighted the difficulty of accessing mental health care due to language barriers:

“ So then if they want to access mental health care in Macao (China), they can’t really rely on the public medical services. It’s not available, and also the nurses, doctors, and they have the right not to speak English [P02, Legislative Council Member, Macao (China)] .”

These barriers extend to non-native English speakers, who struggle to articulate complex health issues:

Moreover, the level of English proficiency varies among patients, with a participant from Macao (China) stating, “ …even if they speak well in English, usually maybe the middle school or primary school already they learn in the English sessions [P01, Local Community Leader, Macao (China)] .”

The impact of language barriers on diagnosis and treatment

This subtheme explores the detrimental effects of language barriers in healthcare, including misdiagnoses, treatment errors, and compromised quality of care. These barriers significantly challenge the healthcare providers’ ability to provide accurate diagnoses and effective treatments, particularly in Germany, Romania, and the Netherlands.

In Germany, the importance of effective language mediation in diagnosing health issues was underlined. As one professional stated:

“Well, the moment I do not have a language mediation, I am limited in my possibilities. Yes, so I-, also the risk, I understand something wrong and therefore make a wrong diagnosis for example [P06, Psychotherapist, Outpatient Mental Health Centre for Migrants, Germany].”

This quotation highlights the potential adverse outcomes of language barriers, where miscommunication could lead to incorrect diagnoses and improper care.

The same situation is emphasized by a Romanian participant, who highlighted the multifaceted impact of language barriers on the healthcare experience, particularly in psychiatric settings. A psychiatry unit head stated:

“ Linguistic barriers decrease patient and medical staff satisfaction and communication between medical providers and patients. Patients who face language barriers are more likely to consume more or fewer healthcare services and experience more adverse events. Patients experience poorer patient examination, misdiagnosis, delayed treatment, incomplete understanding of the patient’s condition, and low trust in services received [P03, Psychiatrist, Romania] .”

These insights illustrate that language proficiency extends beyond speaking the same language—it also requires an understanding of regional language nuances.

In the Netherlands, language barriers are also seen as obstacles to the quality of treatment for migrant patients. HCPs expressed difficulties in establishing connections with patients and understanding their problems due to these barriers. As one participant shared:

“In terms of language, I think it is also difficult. Because you, of course, already have a problem with making a connection with a client anyway. That is often difficult to make someone feel heard and really understand someone [P08, Psychiatric Counselor, the Netherlands].”

This comment highlights the emotional strain language barriers can impose on HCPs who may feel unable to deliver optimal care due to these constraints.

Furthermore, patients themselves also grapple with expressing their concerns adequately, contributing to feelings of being unheard and misunderstood. Consequently, language barriers are associated with higher rates of treatment dropout or absences, as elaborated by one participant:

“ If you take a look at the group of people who actually have insufficient command of the Dutch or English language, but, because there is no other option, enter into treatment, you will see that the problem is you sometimes cannot properly complete treatment or go into deeper layers, because someone gets stuck in terms of the language. So, they cannot share their emotions well enough, cannot express sufficiently what is going on and then you often see a high dropout rate or high no-show [P05, Coordinator at Psychiatric Knowledge Centre for Migrant Care, the Netherlands] .”

Theme 2: Cultural barriers

Based on our analysis of interviews, we found that there are common challenges faced by healthcare professionals in providing mental health services to migrants. These challenges include language barriers, cultural differences, and a lack of cultural competence among healthcare professionals. These factors contribute to stigma, discrimination, and limited access to mental healthcare services for migrants. Our findings highlight the need to address these challenges by enhancing cultural competence among healthcare professionals and by raising awareness of mental health issues within migrant communities. We also found that cultural norms significantly impact healthcare expectations, which underscores the importance of providing culturally inclusive healthcare services to migrant populations.

Stigmatization and misconceptions about mental health

The stigmatization and misconceptions about mental health are prevalent issues in many countries, affecting both the native population and migrant communities. During an interview in Germany, a participant pointed out that migrants frequently encounter obstacles in accessing mental healthcare due to the existence of different mental health models, stigmatization, and limited knowledge of their rights and the healthcare system. This implies that effective interventions should be culturally sensitive and strive to bridge these gaps in understanding while also educating migrants about their rights within the healthcare system:

“A deficiency of knowledge about their rights and the healthcare system of the host country, stigmatization, and differing explanatory models of mental health disorders and expectations concerning treatment could also be a barrier [P05, Founder of Migration Integration Center, Social Worker, Germany].”

It has been reported that both the general population and migrant communities in Romania face stigma when it comes to mental health. As the Former State Secretary noted:

“Mental health care is often not regarded as a priority, and it is rarely spoken of” and “access to mental healthcare is also deterred by a certain degree of stigma associated with mental health affections in both the host country but as well within migrant communities and groups [P01, Former State Secretary, Romania].”

Furthermore, in Romania, a former accredited social worker highlighted the stress and trauma experienced by migrants in navigating a new society and healthcare system. They stated:

“ Within the migrant and refugee groups that I worked with I could identify clear signs of trauma and mental health problems. But people were too worried about their material problems…that they would not have any bandwidth left to think about mental health problems [P06, Former Social Worker, Romania] .”

Cultural taboos and the stigma related to mental health also emerged as significant barriers in China and the Netherlands. A participant from China stated:

“ Actually, there are many [mental problems], but they don’t want to bring it up … we should run to a psychologist, but yes, that’s the stigma that I don’t want people to see me in this way [P06, Migrant Workers Union Representative, Macao (China)] .”

Similar sentiments were echoed in the Netherlands, where participants cited the cultural taboo surrounding mental health as a significant deterrent to some migrants seeking mental health care. This stigma was captured by P03’s statement:

“ When you start talking about mental healthcare, they [migrants] will be a bit distant and cautious…they will think ‘I am not crazy. Why should I go to treatment? [P03, Chair of Migrant Patient Organization, The Netherlands] .”

Societal and cultural misunderstandings of mental health in Macao (China) result in systemic barriers. The societal dismissiveness of mental health needs, especially among the local population and employers, makes it difficult for migrant workers to seek help and be taken seriously:

“The local population does not understand mental health enough. So then, they tend to ignore people’s need for this, and it’d be quite easy for them to, per se that, if the migrants say: “We need to, I need to, “they might just say that “Oh, you’re just homesick” or “you’re just pretending you’re sick” and any kind of situation like that. So, you can see that, on the one hand, we do not have enough service providers, then the language barrier, and then the social culture, you know, all people who kind of not know about mental health would also be a barrier for them [P02, Legislative Council Member, Macao (China)].”

Discrimination and institutional racism

In South Africa, interviewee P10 brought forward the issue of discrimination against foreign nationals, stating that being a foreigner can make it more challenging to receive treatment. P10 expressed:

“Discrimination… that you’re foreign national/actually counts against you, to receive treatment… [P10, Manager, Migrant Support Centre, personal migrant background, South Africa].”

In South Africa, there are documented xenophobic attacks on foreigners, and discrimination against foreign nationals affects their access to healthcare services:

“You know, the minute they start interrogating people: Where do you come from? Uhm. Then, it is just xenophobic through and through. … So we know that xenophobia is really rife for all migrants who are accessing any kind of healthcare, social care … xenophobia is pervasive, and unfortunately, that is really ingrained in the healthcare system and also coming from healthcare practitioners themselves. // that xenophobia layer hangs around all the time, whether it is, uhm, in communities or in healthcare institutions [P08, Director at University Health Communication Centre; Associate Professor Speech Therapy, South Africa].”

Discrimination and institutional racism also appeared in the Netherlands, where interviewees pointed out the difficulties non-native speakers face in accessing healthcare due to language barriers. P07, for instance, noted this situation as follows:

“… a clear example of institutional racism [P07, Local Community Leader, The Netherlands].”

Cultural misunderstandings and inadequate services

In South Africa, cultural misunderstandings between the Western bio-medical model and traditional health systems were significant. Interviewee P03 highlighted the lack of a common understanding of what constitutes mental health and mental illness:

“So, the cultural understanding of mental illness and what counts as that (differs among different communities of users) [P03, Public Mental Health Researcher; Associate Professor, Deputy Director Public Mental Health Centre, South Africa].”

Another participant revealed the limited consideration given to refugees’ cultural beliefs and traditional practices in public health services, stating:

“Public health services are rarely tailored to consider // cultural beliefs and traditional practices of refugees or asylum seekers. At home, HCPs may encourage patients with mental health issues to see a traditional healer. [P10, Manager, Migrant Support Centre, personal migrant background, South Africa].”

Healthcare providers’ unpreparedness to cater to migrants’ unique needs is another recurring theme in the study. In Germany, one interviewee lamented that healthcare providers seemed ill-equipped for the distinct treatment requirements of these populations:

“The doctors in private practice are not prepared for the structures that the refugees bring with them [P02/P03, Physician, Medical Association Board Member, Physician, Medical Association Board Member, Germany].”

For an effective treatment process, HCPs should be culturally sensitive and open to understanding different cultures, mental health customs, and languages. P05 from the Netherlands acknowledged that culturally sensitive providers deliver better results:

“ What you see is that when providers are culturally sensitive, you see that the results are already much better. Even if the language is not optimal and patients do speak sufficiently Dutch or English, treatment can sometimes be completed [P05, Coordinator at Psychiatric Knowledge Center for Migrant Care, The Netherlands] .”

In China, non-verbal communication is often used to express emotion and convey meaning. This can be a barrier to effective communication with healthcare providers who may not be familiar with these cultural norms. In the Asian context, migrants may not express things directly, and their concerns manifest through non-verbal communication:

“… That’s the one that comes to mind most often, and /um/, others would be that um, the non-verbal communication from the different cultures maybe, maybe different and so if someone in particularly in Macao working from an Asian culture, they generally are not taught or not as adept at picking up non-verbal cues um from the patients such as, the um anxious movement that the patient may have, the lack of eye contact the patient may give (…) [P05, NGO Executive Member, Macao (China)] .”

Theme 3: systemic barriers

Whilst the language and cultural barriers are built-in and dealt with at an interpersonal level, the research also taps into the systemic barriers that stem from how healthcare systems are designed in each national context we are analyzing.

Bureaucratic challenges and cost implications

In Germany, the healthcare system presents its own complex and time-consuming bureaucratic procedures. As one interviewee notes, the healthcare system’s complex and time-consuming procedures can impact anyone seeking care from the general population, including migrant communities:

“ Even if you or I am now in therapy or have psychological problems. You have to be very active about it. You have to go yourself and say to the family doctor: I have problems here. The general practitioner has to recognize it and be prepared to refer you. You have to sort things out with the health insurance company. You have to see if you can find a therapist who suits you [P01, Federal Migration and Refugee Official, Germany] .”

Romania faces similar issues, but with added financial burdens. Migrants must navigate a complex and costly process to gain health insurance and access to healthcare services. The complexity of this process, combined with the language barrier and limited resources, makes it particularly challenging for many migrants:

“When it comes to registering for health insurance and access to healthcare, entering the healthcare system is complex, costly, and bureaucratic” and “this process can be not only complicated but also costly for many migrants who recently entered Romania, do not speak the language, and have scarce financial resources [P06, Former accredited social worker, Romania].”

As summarized by one Romanian interviewee, the specific problems are:

“ The ability of migrants to be covered with insurance, to have access to health services, to have sufficient knowledge about how the health system works, where to address when they have health problems, language barriers, trust in the health system and the ability to know to whom to address and from whom to take a prescription [P01, State Secretary, Romania] .”

The issue of cost is further exemplified in the Romanian context, where the fee for enrolling in the healthcare system may be equivalent to the handout allowance provided for monthly expenses. This, along with additional monthly fees after the first six months, is a significant barrier to healthcare access for refugees and migrants:

“The cost for enrolling in the system now is around 1300 Romanian Lei (around 275 euros at the time of the interview). Once we enrol them and we pay this amount they are enrolled for 6 months, and they have full coverage. This often equals the handout allowance that they are offered for groceries and monthly expenses [P06, accredited social worker working in integration services, Romania].”

Employer-related obstacles

In Macao, China, fear of employment termination acts as a barrier to migrants seeking healthcare services. Further, the lack of enforcement of the requirement for employers to pay for a minimum insurance policy for migrant workers leads to limited access to healthcare services:

“ The problem is that the patient [migrant worker] is not allowed by the employer to return for multiple visits even if we [NGO clinic] don’t charge for that (…) the big problem is that the employer doesn’t really follow the law and pay the insurance policy for the patients [P05, NGO Executive Member, Macao (China)] .”

Language barriers, specifically in Macao, China, also exacerbate systemic challenges to mental healthcare access. Documents provided in Portuguese, a language many migrants are not familiar with, create additional obstacles for them:

“… and the paperwork right here is in Portuguese, and it is difficult, because I have zero ability in Portuguese, for example, like … it still can be, but the writings here are in Chinese - Portuguese, and that is the obstacle [P08, Migrant Workers Union Representative, China]. ” “Sometimes if we go to the doctor, the receipt is given, and maybe there is a pharmacist, but we consume the medicine based on its dose in number [P08, Migrant Workers Union Representative, Macao (China)].”

The lack of resources for mental healthcare services

In Germany, there is a critical strain on multilingual healthcare professionals who are often migrants themselves. Due to the influx of requests, these practitioners, including doctors in private practice and those in specialized facilities like treatment centres for torture victims, are often overwhelmed:

“But these are often practitioners who themselves have a migration background and who develop a great passion for this topic. But they are also often overwhelmed because they have to deal with so many requests… It’s a huge burden for the treatment providers to have to turn people away…And I think that is what also wears the practitioners down a bit [P01, Federal Migration and Refugee Official, Germany].”

In South Africa, access to mental health services is a major concern as limited services are available, making it difficult for those in need to receive the required support:

“ But then, uhm, there’s the same barriers as people in South Africa have in accessing services because there aren’t enough services / for the local population / anyway [P01, Government Health Researcher, Former Mental Health Department Director, South Africa]. ”

This was also echoed by P08:

“ It’s not just access for migrants … one could say that it is pretty much in shambles … unfortunately …. (for all) accessing public healthcare, mental healthcare systems… [P08, Director at University Health Communication Centre; Associate Professor Speech Therapy, South Africa]. ”

In China, there are systemic barriers to reaching migrants, as this is done through passive means such as posters and fliers. The approach towards change is defensive and resistant, with no acknowledgment of clinical psychology and mental health treatments.

“ So, I think that in Macao, everyone says the barriers which we don’t have enough mental health services which are we do not have enough, so then this is kind of barrier for everyone, but for the migrant workers, there would be an extra barrier so aside from they have to access the mental health service and the language is a bit issue. On the one hand, all kinds of local information are not always- it’s not easy to find, you know, social services information in English. So, most of the things here, this is a Chinese city, and even though we believe this is also an international city, the official languages are Chinese and Portuguese [P06, Migrant Workers Union Representative, China] .”

The healthcare system in all five countries aims to reach universal coverage. However, it fails to grasp the extent to which migrants need better access to mental healthcare services and plan resources and strategies to meet this need. In countries like China, the Macao Special Administrative Region, Romania, and South Africa, the urgency of addressing migrants’ mental healthcare needs is even less acknowledged.

The objective of this study was to elucidate the barriers to healthcare access encountered by migrants in Germany, Macao (China), Romania, South Africa, and the Netherlands, with a particular focus on mental health services. The data presented reinforces the complexities tied to healthcare access among migrants, substantiating earlier work that emphasizes the multifaceted barriers to healthcare access [ 29 , 70 , 71 ]. This study adds to the existing literature by comparing and contrasting healthcare barriers across countries with varying healthcare infrastructures and examining these issues through the specific lens of mental health services.

In our examination of the interplay between migrants and healthcare systems across diverse contexts, we uncover the nuanced bidirectional dynamics that underpin access to mental health care, as conceptualized within Bronfenbrenner’s ecological framework. Our findings highlight the microsystem interactions, particularly the pivotal role of language services, where the absence or inadequacy of professional interpretation directly impedes migrants’ healthcare experiences. Simultaneously, migrants’ encounters and coping mechanisms in response to these barriers illuminate the critical need for systemic change, potentially influencing policy revisions and resource allocation towards more accessible interpreter services. This interconnection extends to the mesosystem, where the reliance on non-professional interpreters not only compromises care quality but also catalyzes dialogue within healthcare institutions about enhancing language support, evidencing the reciprocal influence between individual experiences and organizational practices. At the broader macrosystem level, cultural perceptions and policies significantly shape the mental healthcare landscape for migrants, with stigma and policy deficiencies serving as formidable obstacles. Yet, migrants’ active participation in mental health discourse and advocacy heralds a gradual cultural shift towards inclusivity and recognition of their healthcare rights. Our research delineates the complexity of these ecological interactions, advocating for a multifaceted approach to healthcare policy and practice that acknowledges and leverages the dynamic exchanges between migrants and their environmental contexts. By foregrounding these bidirectional influences, we aim to contribute to the development of more responsive, equitable, and culturally competent mental healthcare systems that not only address the immediate needs of migrants but also adapt to the ongoing changes within global migration patterns and societal norms.

Overcoming language and communication barriers

A salient finding was the role of language barriers in affecting the quality of healthcare service delivery. Previous research has established that language barriers negatively impact patient satisfaction, healthcare delivery, and the cost and quality of healthcare services [ 26 , 71 , 72 , 73 ]. The finding that language barriers are a key challenge for migrants accessing healthcare services is consistent with earlier work [ 26 , 29 , 71 , 72 ]. This study corroborates these findings and extends our understanding by exploring the effects in the context of mental health services for migrants in five different countries, thus adding a transnational lens to the issue. Lack of funding for professional interpreters emerged as a common issue, exacerbated by healthcare professionals’ limited multilingual skills. Language barriers were overcome using professional and non-professional interpreters, digital tools, language-reduced resources, and multilingual staff. As revealed by this study, Romania, China, and South Africa face particularly significant inadequacy and a lack of professional interpretation services within their healthcare systems.

The research indicates that professional interpreters are underutilized or unavailable despite the recognized necessity. Professional interpreters are available in Germany and the Netherlands, but financial constraints prevent their widespread use. This issue is further exacerbated by the lack of legal regulations governing interpreters in healthcare in Germany [ 74 ]. The Netherlands also faces financial challenges in funding interpreters. In South Africa, insufficient funding for interpreting services makes it difficult to provide care to linguistically diverse migrant populations, leading to concerns about unequal access to healthcare. Health institutions in Romania and Macao also struggle to provide interpreting services, posing significant challenges in ensuring effective communication and access to mental healthcare for migrants. Hence, addressing language barriers is critical for migrant patients to improve healthcare access and delivery, particularly to mental health services. A systematic review from 2018 [ 39 ] identified the key strategies to address communication barriers in healthcare settings for migrants —cultural mediation, interpretation, health information translation, multilingual healthcare providers, and healthcare provider training—that have shown a positive impact in improving health knowledge and access. However, gaps in training and role clarity for cultural mediators and interpreters indicate the need for standardization [ 39 , 75 , 76 ]. Klemm et al. (2015) distinguished between two important aspects of effective communication in healthcare involving migrants: linguistic interpretation and cultural mediation. Linguistic interpretation is the process of accurately conveying the meaning of language during interpersonal interactions. It is a professional activity and involves adhering to recognized standards and codes of conduct [ 77 ]. On the other hand, cultural mediation aims to bridge the gap between the ways of thinking and non-verbal communication of health workers and migrants. It helps both parties gain a deeper understanding of each other’s cultures and meanings, thereby fostering mutual understanding. Cultural mediators inform health professionals about the cultural practices of migrants and help migrants navigate the health system while also informing them about their entitlements [ 78 ].

The findings of the current study highlight the significant reliance on non-professional interpreters or multilingual staff in the healthcare systems of the studied countries due to the lack of professional interpreters. Despite the recognized need for interpretation and cultural mediation services, professional interpreters have often not been utilized adequately, largely due to migrant patients’ preferences, financial constraints, and systemic issues [ 29 , 49 , 50 , 76 , 79 , 80 ]. The use of untrained individuals as interpreters poses significant risks to the quality of healthcare, introducing concerns about accuracy, professionalism, and confidentiality, an issue also raised by earlier studies [ 81 , 82 , 83 ]. The Global Competency Standards for Health Workers in Refugee and Migrant Health, developed by WHO’s Health and Migration Program in 2021, offer a framework for handling the language and communication barriers that exist between health workers and migrants. The document emphasizes the need for safe and effective language and communication aids, including interpreters and cultural mediators, to meet the unique requirements of these populations. These aids are crucial for bridging language and cultural gaps, improving patient comprehension, and enhancing the quality and safety of healthcare. The document also discusses the difficulties and ethical concerns associated with non-professional interpretation and points out that machine-automated translation technologies can be used as supplementary aids, even though they have certain limitations [ 41 ]. Efforts to tackle language barriers in healthcare should be evidence-based and involve diverse stakeholders, including patients and their families. These initiatives should be tailored to local contexts and consider ethical factors. Adopting a community-based research approach can facilitate co-created solutions that meet various needs, reduce stigma, and empower all participants in linguistically diverse healthcare interactions [ 84 ].

Additionally, the use of electronic translation tools has been proposed as a potential solution to overcome language barriers in healthcare settings. These tools may provide various benefits, including shorter consultation times, decreased reliance on interpreter services, lower patient anxiety, and favorable outcomes in terms of both acceptance and effectiveness [ 85 ]. Nevertheless, they also have notable disadvantages, such as inaccuracies in translation, possible misinterpretations arising from context-specific linguistic subtleties, and constraints in establishing the therapeutic relationship [ 86 ]. Ethical concerns about the inclusion of electronic translations in clinical interactions include issues of confidentiality, the accuracy of translated information, and the potential for compromised interactions [ 41 ]. Electronic translation tools can be helpful, but machine-automated translation is not very effective when dealing with complex and nuanced information, especially in health and legal contexts [ 41 ]. A lack of binding standards for assessing quality criteria and indicators when testing technological tools to overcome language barriers in healthcare has been reported [ 86 ].

Language barriers emerged as a predominant challenge in our study of healthcare access for migrants in China, Romania, South Africa, Germany, and the Netherlands, significantly impacting mental healthcare. Historical migration flows and linguistic landscapes in these countries have shaped their current healthcare challenges. In China, regions like Macao exhibit extreme multilingualism, with numerous Chinese dialects and foreign languages such as Portuguese, English, and Filipino, requiring comprehensive language support services [ 87 , 88 ]. In South Africa, nationals from over 100 countries now reside there, with migrants from Nigeria, Ghana, Senegal, Mali, the Democratic Republic of Congo, and Zimbabwe, necessitating healthcare systems that can accommodate diverse linguistic needs [ 89 ]. Despite the country’s 11 official languages, English remains the dominant language in business, public life, and increasingly in domestic settings [ 90 ]. However, many migrants and citizens may not be proficient in English or any of the other official languages, posing significant barriers to healthcare access. Germany and the Netherlands face significant challenges due to large migrant populations from Syria and Turkey. Germany also sees substantial migration from Romania and Poland, with recent increases in asylum seekers from Afghanistan and Turkey [ 91 ]. The Netherlands similarly deals with an influx from Syria, Poland, and Romania, requiring targeted language services within their healthcare systems [ 91 ]. In Romania, the primary issue is the linguistic integration of a largely Romanian-speaking population with minority languages such as Hungarian and German [ 92 ]. The recent influx of Ukrainian refugees has amplified linguistic challenges, emphasizing the need for inclusive language policies to ensure effective communication and care [ 91 ]. While language barriers are often more immediate and major obstacles, emphasizing the importance of language support to ensure equal access to healthcare for migrants, other challenges, such as cultural aspects or power imbalances, should also be considered.

Mental health issues, cultural barriers, and healthcare provider competence

The current research highlights issues with stigma, discrimination, and a lack of cultural competencies among healthcare professionals, and the fact that mental health care for migrants is a complex issue due to cultural barriers. These factors have been found to limit access to mental health services, creating significant barriers for migrants seeking healthcare.

Addressing mental health in migrants is burdened by both cultural and systemic factors [ 14 ]. The prevalence of mental health conditions is higher in these groups compared to the general population, yet diagnoses by healthcare providers are often missed [ 93 ]. People who migrate often face challenges associated with leaving areas of war, mistreatment, and financial difficulties. When they reach their destination, they might confront difficulties due to differences in language, lack of social support, and the necessity to adjust to new cultural and religious customs. These circumstances can negatively impact their emotional well-being [ 14 ]. Mental health stigma is a common issue across cultures, with some viewing mental health/illness as something to be ashamed of, taboo, or linked to evil spirits. This kind of stigma can act as a barrier for migrants to access mental healthcare. Moreover, the stigma can emerge from society, family, healthcare professionals, or within the individual themselves [ 94 , 95 ]. Migrants encounter systemic obstacles when accessing mental health services due to lack of knowledge, communication difficulties, and fear of deportation. Disparities in care for minorities, migrants, and refugees highlight the importance of improving accessibility and adapting systems, services, and interventions [ 14 , 96 ].

To support migrant and refugee patients, healthcare providers need training in cultural diversity and cultural competence. This includes addressing racial discrimination and providing resources like mental health professional skill-building [ 96 ]. Healthcare providers should receive guidance and training to develop the necessary skills, which includes training in cultural competence, working with interpreters, and understanding cross-cultural mental health. Additional support is offered through cultural consultancy services that help clinicians navigate intercultural challenges and improve their knowledge of cultural anthropology [ 39 ].

One important consideration in the provision of mental health care to migrant populations is the potential limitation of conventional mental health interventions, which often emphasize verbal therapies [ 97 ]. While these approaches can be effective for many, they may not adequately address the needs of individuals who face language barriers. The applicability of these psychotherapy models in diverse cultural contexts is a subject of discussion, underscoring the necessity for further research and the development of localized psychotherapy models [ 98 ]. Migrants, in particular, may require more innovative and culturally sensitive approaches to mental health care [ 99 , 100 , 101 , 102 , 103 ].

Systemic barriers and policy considerations

The results obtained from the study indicate that there are various systemic barriers to mental health care for migrants, which are complex and intertwined. Barriers such as bureaucracy, finances, navigating the healthcare system, and lack of providers prevent migrant patients from accessing mental healthcare. The above-mentioned barriers highlight the urgent need for systemic and policy changes in these countries to ensure that mental healthcare access is inclusive, accommodating, and effective for all populations, including migrants. The changes must address bureaucratic hurdles, financial constraints, and a lack of resources for mental healthcare services to eliminate the complex interplay of economic, language, and cultural barriers that migrants face in healthcare settings. A scoping review from 2018 outlined several strategies to improve healthcare communication with refugees and migrants. However, the review also highlighted the need for more research to establish their effectiveness, indicating a lack of evidence-based knowledge regarding resources needed to establish and maintain the implementation of identified strategies [ 39 ].

Healthcare systems might be hard to navigate and seem overly bureaucratic, even for nationals who speak the official dominant languages of the system. In relation to migrants in vulnerable situations who are less proficient in the official language(s) of the system, the healthcare system is often outwardly repelling due to legal and bureaucratic barriers [ 10 , 104 ]. Migrants frequently encounter various systemic barriers that limit their access to essential health services. These barriers may include institutional discrimination, inadequate health literacy, and limited access to mainstream services. To ensure equitable access to healthcare services for this population, it is necessary to implement a multi-faceted approach that involves policy changes, community engagement, and capacity building among healthcare professionals. While healthcare professionals play a critical role, it is also important to consider policy and legal frameworks that govern access to health services for migrants and refugees. National and international laws should be aligned with healthcare goals to ensure these services are effectively delivered [ 105 ].

One of the key strategies is to engage vulnerable migrants in their healthcare through community involvement. This approach was used by the MyHealth European project aimed to improve healthcare access and quality for migrants in Europe. The project proposed that local authorities should invest in health professionals’ cultural competencies and that migrants should adapt their help-seeking behavior [ 106 ]. To address healthcare inequalities, it is necessary to implement systemic changes through legislation. Healthcare institutions should also introduce intercultural mediators, provide cultural competence training for healthcare workers, and use a self-evaluation tool to measure the level of equity. Slovenia’s “Together for Health - Skupaj za zdravje” project, led by the National Institute of Public Health, utilized this approach effectively [ 107 ].

To improve healthcare access for migrants, healthcare policies and legal frameworks need to address systemic barriers that significantly affect their health. In many cases, these policies can lead to limited healthcare access and have been shown to affect mental health and contribute to health inequalities negatively. This suggests the need for more inclusive and migrant-friendly policies to improve health outcomes [ 108 ]. Migrants often face limited healthcare access due to their citizenship status. Many countries link healthcare access to citizenship, leaving migrants vulnerable when their claims are denied. Policies should prioritize the right to healthcare, regardless of citizenship status [ 109 ]. Migrants need to be made aware of their legal entitlements to improve their access to healthcare. Policies should include provisions for raising awareness among them [ 11 ].

Limitations of the study

It is important to note that Bronfenbrenner’s framework has some limitations. The framework may overlook certain phenomena that do not fit the structured layers. There are inherent risks of selection bias and limited generalizability due to purposive sampling techniques, especially when recruiting participants through professional networks. Additionally, semi-structured interviews may introduce interviewer and respondent biases, which can be exacerbated by using different interview mediums. Transcription and translation may also lead to the loss of linguistic and cultural nuances even when proficient bilingual researchers are involved. Thematic analysis is subjective, and emergent themes that are not identified in the pre-constructed matrix may be excluded. There are also temporal constraints, as the study was conducted in 2021, which may affect the long-term applicability of the findings. Finally, ethical challenges may arise when discussing sensitive mental health topics, despite efforts to ensure participant confidentiality. The generalizability of our findings, rooted in qualitative methodology, does not extend to the healthcare systems of the countries studied in their entirety. This approach, pivotal for hypothesis generation, offers a nuanced understanding of targeted phenomena within healthcare contexts. It is important for readers to bear these constraints in mind when interpreting the findings and to recognize the potential for broader explorations in future research.

Implications and future directions

Our investigation delineates the complex healthcare barriers migrants encounter, reinforcing the WHO’s advocacy for robust, systematic data collection to inform nuanced, evidence-based healthcare policies [ 108 ]. The study’s cross-cultural comparison suggests that overcoming these challenges necessitates a collaborative, intersectoral strategy, fostering healthcare systems that are both inclusive and responsive to the cultural and linguistic diversity of migrant populations. For example, while language barriers are a universal issue, the extent to which countries provide and fund professional interpretation services varies significantly. Germany and the Netherlands, with more established systems for interpretation, contrast sharply with South Africa and Romania, where financial and systemic constraints impede such services. This disparity underscores the potential for policy learning and adaptation across countries, where best practices in one context could inform policy developments in another. This approach emphasizes the potential of international collaboration and policy innovation, advocating for the adaptation of successful strategies across borders to enhance global migrant healthcare access. The diversity observed in healthcare experiences and systems across the studied countries highlights an opportunity for mutual learning and strategy adaptation, emphasizing the importance of creating flexible, culturally sensitive healthcare solutions to meet the diverse needs of migrants effectively.

The existing situation, as portrayed by this study, necessitates immediate and future interventions. Policymakers should consider providing sustainable funding options for professional interpreting services and for capacity building for healthcare providers. Considering these findings, it is imperative that policymakers, healthcare organizations, and mental health professionals in these countries take immediate and concerted action to address these barriers. This includes investing in professional interpretation services, enhancing cultural competencies among healthcare providers, combating discrimination and institutional racism, simplifying bureaucratic processes, and increasing resources for mental healthcare services. Only through collaborative efforts can these countries ensure that all individuals, regardless of their migration status or background, have equitable access to quality mental health care. Failure to address these issues not only perpetuates the suffering of migrants but also poses public health risks by leaving mental health conditions untreated and unmanaged. Simply relying on emergent solidarities that compensate the failures of the system at the fringes of the healthcare system does not represent a viable policy for the future.

The present study highlights the various obstacles that migrants face when trying to access healthcare, particularly in mental health services. Our findings suggest that a combination of measures is needed to overcome these obstacles, including improvements in language services, capacity building among healthcare providers, and policy reforms. As global migration continues, it is essential that these strategies are urgently implemented as a fundamental part of healthcare service provision and are brought into the political agenda. Our research emphasizes the need for collaborative efforts among policymakers, healthcare organizations, and professionals to address these challenges. Neglecting to act in a timely manner could lead to significant public health risks and perpetuate the suffering of this vulnerable population.

Data availability

The datasets used and analyzed during the current study are available from the University of Amsterdam, Babeș-Bolyai University, Stellenbosch University and the University Medical Center Hamburg-Eppendorf. Data are available from the authors upon reasonable request and with the permission of The University Medical Center Hamburg-Eppendorf. Please contact the corresponding author and research project coordinator, Mike Mösko, for data requests and inquiries.

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Acknowledgements

We express our gratitude to the stakeholders who kindly spared their time and expertise for this research.

Open Access funding enabled and organized by Projekt DEAL. This study is made possible with the support of the Volkswagen Foundation under the research project: “Multilingualism in Providing Quality Mental Health Care to Migrants - Needs, Resources and Practices”. The findings of this study are the sole responsibility of the contributing authors and do not necessarily reflect the views of the funder. Grant ID: 9A675. We acknowledge financial support from the Open Access Publication Fund of UKE - Universitätsklinikum Hamburg-Eppendorf and DFG – German Research Foundation.

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Alina Ioana Forray, Ovidiu Oltean & Răzvan Mircea Cherecheș

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Saskia Hanft-Robert, Sanna Higgen & Mike Mösko

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A.I.F., O.O., S.H.R., S.H., A.L., B.S., B.J.H., C.A., and L.S. collected, curated, coded, and analyzed the data and wrote the main manuscript text. R.M., R.M.C., B.J.H., and M.O.M. designed, led, and administered the study, acquired funding, and validated the findings. All authors have read and agreed to the published version of the manuscript.

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Forray, A.I., Oltean, O., Hanft-Robert, S. et al. Uncovering multi-level mental healthcare barriers for migrants: a qualitative analysis across China, Germany, Netherlands, Romania, and South Africa. BMC Public Health 24 , 1593 (2024). https://doi.org/10.1186/s12889-024-19046-z

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Associations Between Objective and Subjective Experiences of Childhood Maltreatment and the Course of Emotional Disorders in Adulthood

• 1 Social, Genetic and Developmental Psychiatry Centre and Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, United Kingdom
• 2 National and Specialist Child and Adolescent Mental Health Service Clinic for Trauma, Anxiety, and Depression, South London and Maudsley NHS Foundation Trust, London, United Kingdom
• 3 Psychology Department, John Jay College, City University of New York, New York
• 4 Graduate Center, City University of New York, New York
• Correction Error in Figure 1 JAMA Psychiatry

Question   Is a history of childhood maltreatment associated with an unfavorable course of emotional disorders in adulthood?

Findings   In this cohort study of 1196 participants followed up to age 40 years, the subjective experience of childhood maltreatment measured through retrospective self-report at age 29 years was associated with the number of subsequent follow-up phases with depression or anxiety, whereas the objective experience measured through official court records was not. Current and lifetime psychopathology at the time the subjective experience was assessed explained its association with the later course of emotional disorders in participants who did not have objective measures of maltreatment but not in those who did.

Meaning   The findings suggest that modification of the subjective experience of childhood maltreatment may improve the longitudinal course of emotional disorders.

Importance   A history of childhood maltreatment is associated with an unfavorable course of illness for emotional disorders. However, the origins and mechanisms underlying these associations are unknown.

Objective   To examine the relative associations of objective and subjective measures of childhood maltreatment and continuity in psychopathology with the course of emotional disorders in adulthood.

Design, Setting, and Participants   This prospective cohort study followed up until age 40 years participants residing in a metropolitan county of the US Midwest with substantiated records of childhood physical and sexual abuse and/or neglect between 1967 and 1971 and a demographically matched group of participants experiencing no abuse or neglect in childhood. The collected data were analyzed between October 2021 and April 2022.

Exposures   The objective experience of childhood maltreatment before age 12 years was prospectively measured through official court records, whereas the subjective experience was measured through retrospective self-report at a mean (SD) age of 29 (3.8) years. Current and previous lifetime psychopathology was also assessed at a mean age of 29 (3.8) years.

Main Outcomes and Measures   Symptoms of depression and anxiety were measured at mean (SD) ages of 39.5 (3.5) and 41.2 (3.5) years using Poisson regression models.

Results   In a cohort of 1196 participants (582 [48.7%] female and 614 [51.3%] male) followed up to age 40 years, those with objective plus subjective measures of childhood maltreatment had a greater number of subsequent follow-up phases with depression or anxiety than controls (depression: incidence rate ratio [IRR], 2.28 [95% CI, 1.65-3.15]; anxiety: IRR, 2.30 [95% CI, 1.54-3.42]), as did those with subjective-only measures (depression: IRR, 1.49 [95% CI, 1.02-2.18]; anxiety: IRR, 1.58 [95% CI, 0.99-2.52]). In contrast, participants with objective-only measures did not have a greater number of follow-up phases with depression or anxiety (depression: IRR, 1.37 [95% CI, 0.89-2.11]; anxiety: IRR, 1.40 [95% CI, 0.84-2.31]). Current and lifetime psychopathology measured at the time the subjective experience was assessed explained its association with a later course of emotional disorders in participants with subjective-only measures but not in those with objective plus subjective measures.

Conclusions and Relevance   In this cohort study, the associations seen between childhood maltreatment and poor course of emotional disorders over the subsequent decade were largely attributable to the subjective experience of maltreatment, which was partly explained by continuity in psychopathology. Modification of the subjective experience of childhood maltreatment could improve the longitudinal course of emotional disorders.

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Danese A , Widom CS. Associations Between Objective and Subjective Experiences of Childhood Maltreatment and the Course of Emotional Disorders in Adulthood. JAMA Psychiatry. 2023;80(10):1009–1016. doi:10.1001/jamapsychiatry.2023.2140

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• Can J Hosp Pharm
• v.67(6); Nov-Dec 2014

Qualitative Research: Getting Started

Introduction.

As scientifically trained clinicians, pharmacists may be more familiar and comfortable with the concept of quantitative rather than qualitative research. Quantitative research can be defined as “the means for testing objective theories by examining the relationship among variables which in turn can be measured so that numbered data can be analyzed using statistical procedures”. 1 Pharmacists may have used such methods to carry out audits or surveys within their own practice settings; if so, they may have had a sense of “something missing” from their data. What is missing from quantitative research methods is the voice of the participant. In a quantitative study, large amounts of data can be collected about the number of people who hold certain attitudes toward their health and health care, but what qualitative study tells us is why people have thoughts and feelings that might affect the way they respond to that care and how it is given (in this way, qualitative and quantitative data are frequently complementary). Possibly the most important point about qualitative research is that its practitioners do not seek to generalize their findings to a wider population. Rather, they attempt to find examples of behaviour, to clarify the thoughts and feelings of study participants, and to interpret participants’ experiences of the phenomena of interest, in order to find explanations for human behaviour in a given context.

WHAT IS QUALITATIVE RESEARCH?

Much of the work of clinicians (including pharmacists) takes place within a social, clinical, or interpersonal context where statistical procedures and numeric data may be insufficient to capture how patients and health care professionals feel about patients’ care. Qualitative research involves asking participants about their experiences of things that happen in their lives. It enables researchers to obtain insights into what it feels like to be another person and to understand the world as another experiences it.

Qualitative research was historically employed in fields such as sociology, history, and anthropology. 2 Miles and Huberman 2 said that qualitative data “are a source of well-grounded, rich descriptions and explanations of processes in identifiable local contexts. With qualitative data one can preserve chronological flow, see precisely which events lead to which consequences, and derive fruitful explanations.” Qualitative methods are concerned with how human behaviour can be explained, within the framework of the social structures in which that behaviour takes place. 3 So, in the context of health care, and hospital pharmacy in particular, researchers can, for example, explore how patients feel about their care, about their medicines, or indeed about “being a patient”.

THE IMPORTANCE OF METHODOLOGY

Smith 4 has described methodology as the “explanation of the approach, methods and procedures with some justification for their selection.” It is essential that researchers have robust theories that underpin the way they conduct their research—this is called “methodology”. It is also important for researchers to have a thorough understanding of various methodologies, to ensure alignment between their own positionality (i.e., bias or stance), research questions, and objectives. Clinicians may express reservations about the value or impact of qualitative research, given their perceptions that it is inherently subjective or biased, that it does not seek to be reproducible across different contexts, and that it does not produce generalizable findings. Other clinicians may express nervousness or hesitation about using qualitative methods, claiming that their previous “scientific” training and experience have not prepared them for the ambiguity and interpretative nature of qualitative data analysis. In both cases, these clinicians are depriving themselves of opportunities to understand complex or ambiguous situations, phenomena, or processes in a different way.

Qualitative researchers generally begin their work by recognizing that the position (or world view) of the researcher exerts an enormous influence on the entire research enterprise. Whether explicitly understood and acknowledged or not, this world view shapes the way in which research questions are raised and framed, methods selected, data collected and analyzed, and results reported. 5 A broad range of different methods and methodologies are available within the qualitative tradition, and no single review paper can adequately capture the depth and nuance of these diverse options. Here, given space constraints, we highlight certain options for illustrative purposes only, emphasizing that they are only a sample of what may be available to you as a prospective qualitative researcher. We encourage you to continue your own study of this area to identify methods and methodologies suitable to your questions and needs, beyond those highlighted here.

The following are some of the methodologies commonly used in qualitative research:

• Ethnography generally involves researchers directly observing participants in their natural environments over time. 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. 6 An example of ethnographic research in pharmacy might involve observations to determine how pharmacists integrate into family health teams. Such a study would also include collection of documents about participants’ lives from the participants themselves and field notes from the researcher. 7
• Grounded theory, first described by Glaser and Strauss in 1967, 8 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. Grounded theory may be particularly valuable when little or nothing is known or understood about a problem, situation, or context, and any attempt to start with a hypothesis or theory would be conjecture at best. 9 An example of the use of grounded theory in hospital pharmacy might be to determine potential roles for pharmacists in a new or underserviced clinical area. As with other qualitative methodologies, grounded theory provides researchers with a process that can be followed to facilitate the conduct of such research. As an example, Thurston and others 10 used constructivist grounded theory to explore the availability of arthritis care among indigenous people of Canada and were able to identify a number of influences on health care for this population.
• Phenomenology attempts to understand problems, ideas, and situations from the perspective of common understanding and experience rather than differences. 10 Phenomenology is about understanding how human beings experience their world. It gives researchers a powerful tool with which to understand subjective experience. In other words, 2 people may have the same diagnosis, with the same treatment prescribed, but the ways in which they experience that diagnosis and treatment will be different, even though they may have some experiences in common. Phenomenology helps researchers to explore those experiences, thoughts, and feelings and helps to elicit the meaning underlying how people behave. As an example, Hancock and others 11 used a phenomenological approach to explore health care professionals’ views of the diagnosis and management of heart failure since publication of an earlier study in 2003. Their findings revealed that barriers to effective treatment for heart failure had not changed in 10 years and provided a new understanding of why this was the case.

ROLE OF THE RESEARCHER

For any researcher, the starting point for research must be articulation of his or her research world view. This core feature of qualitative work is increasingly seen in quantitative research too: the explicit acknowledgement of one’s position, biases, and assumptions, so that readers can better understand the particular researcher. Reflexivity describes the processes whereby the act of engaging in research actually affects the process being studied, calling into question the notion of “detached objectivity”. Here, the researcher’s own subjectivity is as critical to the research process and output as any other variable. Applications of reflexivity may include participant-observer research, where the researcher is actually one of the participants in the process or situation being researched and must then examine it from these divergent perspectives. 12 Some researchers believe that objectivity is a myth and that attempts at impartiality will fail because human beings who happen to be researchers cannot isolate their own backgrounds and interests from the conduct of a study. 5 Rather than aspire to an unachievable goal of “objectivity”, it is better to simply be honest and transparent about one’s own subjectivities, allowing readers to draw their own conclusions about the interpretations that are presented through the research itself. For new (and experienced) qualitative researchers, an important first step is to step back and articulate your own underlying biases and assumptions. The following questions can help to begin this reflection process:

• Why am I interested in this topic? To answer this question, try to identify what is driving your enthusiasm, energy, and interest in researching this subject.
• What do I really think the answer is? Asking this question helps to identify any biases you may have through honest reflection on what you expect to find. You can then “bracket” those assumptions to enable the participants’ voices to be heard.
• What am I getting out of this? In many cases, pressures to publish or “do” research make research nothing more than an employment requirement. How does this affect your interest in the question or its outcomes, or the depth to which you are willing to go to find information?
• What do others in my professional community think of this work—and of me? As a researcher, you will not be operating in a vacuum; you will be part of a complex social and interpersonal world. These external influences will shape your views and expectations of yourself and your work. Acknowledging this influence and its potential effects on personal behaviour will facilitate greater self-scrutiny throughout the research process.

FROM FRAMEWORKS TO METHODS

Qualitative research methodology is not a single method, but instead offers a variety of different choices to researchers, according to specific parameters of topic, research question, participants, and settings. The method is the way you carry out your research within the paradigm of quantitative or qualitative research.

Qualitative research is concerned with participants’ own experiences of a life event, and the aim is to interpret what participants have said in order to explain why they have said it. Thus, methods should be chosen that enable participants to express themselves openly and without constraint. The framework selected by the researcher to conduct the research may direct the project toward specific methods. From among the numerous methods used by qualitative researchers, we outline below the three most frequently encountered.

DATA COLLECTION

Patton 12 has described an interview as “open-ended questions and probes yielding in-depth responses about people’s experiences, perceptions, opinions, feelings, and knowledge. Data consists of verbatim quotations and sufficient content/context to be interpretable”. Researchers may use a structured or unstructured interview approach. Structured interviews rely upon a predetermined list of questions framed algorithmically to guide the interviewer. This approach resists improvisation and following up on hunches, but has the advantage of facilitating consistency between participants. In contrast, unstructured or semistructured interviews may begin with some defined questions, but the interviewer has considerable latitude to adapt questions to the specific direction of responses, in an effort to allow for more intuitive and natural conversations between researchers and participants. Generally, you should continue to interview additional participants until you have saturated your field of interest, i.e., until you are not hearing anything new. The number of participants is therefore dependent on the richness of the data, though Miles and Huberman 2 suggested that more than 15 cases can make analysis complicated and “unwieldy”.

Focus Groups

Patton 12 has described the focus group as a primary means of collecting qualitative data. In essence, focus groups are unstructured interviews with multiple participants, which allow participants and a facilitator to interact freely with one another and to build on ideas and conversation. This method allows for the collection of group-generated data, which can be a challenging experience.

Observations

Patton 12 described observation as a useful tool in both quantitative and qualitative research: “[it involves] descriptions of activities, behaviours, actions, conversations, interpersonal interactions, organization or community processes or any other aspect of observable human experience”. Observation is critical in both interviews and focus groups, as nonalignment between verbal and nonverbal data frequently can be the result of sarcasm, irony, or other conversational techniques that may be confusing or open to interpretation. Observation can also be used as a stand-alone tool for exploring participants’ experiences, whether or not the researcher is a participant in the process.

Selecting the most appropriate and practical method is an important decision and must be taken carefully. Those unfamiliar with qualitative research may assume that “anyone” can interview, observe, or facilitate a focus group; however, it is important to recognize that the quality of data collected through qualitative methods is a direct reflection of the skills and competencies of the researcher. 13 The hardest thing to do during an interview is to sit back and listen to participants. They should be doing most of the talking—it is their perception of their own life-world that the researcher is trying to understand. Sophisticated interpersonal skills are required, in particular the ability to accurately interpret and respond to the nuanced behaviour of participants in various settings. More information about the collection of qualitative data may be found in the “Further Reading” section of this paper.

It is essential that data gathered during interviews, focus groups, and observation sessions are stored in a retrievable format. The most accurate way to do this is by audio-recording (with the participants’ permission). Video-recording may be a useful tool for focus groups, because the body language of group members and how they interact can be missed with audio-recording alone. Recordings should be transcribed verbatim and checked for accuracy against the audio- or video-recording, and all personally identifiable information should be removed from the transcript. You are then ready to start your analysis.

DATA ANALYSIS

Regardless of the research method used, the researcher must try to analyze or make sense of the participants’ narratives. This analysis can be done by coding sections of text, by writing down your thoughts in the margins of transcripts, or by making separate notes about the data collection. Coding is the process by which raw data (e.g., transcripts from interviews and focus groups or field notes from observations) are gradually converted into usable data through the identification of themes, concepts, or ideas that have some connection with each other. It may be that certain words or phrases are used by different participants, and these can be drawn together to allow the researcher an opportunity to focus findings in a more meaningful manner. The researcher will then give the words, phrases, or pieces of text meaningful names that exemplify what the participants are saying. This process is referred to as “theming”. Generating themes in an orderly fashion out of the chaos of transcripts or field notes can be a daunting task, particularly since it may involve many pages of raw data. Fortunately, sophisticated software programs such as NVivo (QSR International Pty Ltd) now exist to support researchers in converting data into themes; familiarization with such software supports is of considerable benefit to researchers and is strongly recommended. Manual coding is possible with small and straightforward data sets, but the management of qualitative data is a complexity unto itself, one that is best addressed through technological and software support.

There is both an art and a science to coding, and the second checking of themes from data is well advised (where feasible) to enhance the face validity of the work and to demonstrate reliability. Further reliability-enhancing mechanisms include “member checking”, where participants are given an opportunity to actually learn about and respond to the researchers’ preliminary analysis and coding of data. Careful documentation of various iterations of “coding trees” is important. These structures allow readers to understand how and why raw data were converted into a theme and what rules the researcher is using to govern inclusion or exclusion of specific data within or from a theme. Coding trees may be produced iteratively: after each interview, the researcher may immediately code and categorize data into themes to facilitate subsequent interviews and allow for probing with subsequent participants as necessary. At the end of the theming process, you will be in a position to tell the participants’ stories illustrated by quotations from your transcripts. For more information on different ways to manage qualitative data, see the “Further Reading” section at the end of this paper.

ETHICAL ISSUES

In most circumstances, qualitative research involves human beings or the things that human beings produce (documents, notes, etc.). As a result, it is essential that such research be undertaken in a manner that places the safety, security, and needs of participants at the forefront. Although interviews, focus groups, and questionnaires may seem innocuous and “less dangerous” than taking blood samples, it is important to recognize that the way participants are represented in research can be significantly damaging. Try to put yourself in the shoes of the potential participants when designing your research and ask yourself these questions:

• Are the requests you are making of potential participants reasonable?
• Are you putting them at unnecessary risk or inconvenience?
• Have you identified and addressed the specific needs of particular groups?

Where possible, attempting anonymization of data is strongly recommended, bearing in mind that true anonymization may be difficult, as participants can sometimes be recognized from their stories. Balancing the responsibility to report findings accurately and honestly with the potential harm to the participants involved can be challenging. Advice on the ethical considerations of research is generally available from research ethics boards and should be actively sought in these challenging situations.

GETTING STARTED

Pharmacists may be hesitant to embark on research involving qualitative methods because of a perceived lack of skills or confidence. Overcoming this barrier is the most important first step, as pharmacists can benefit from inclusion of qualitative methods in their research repertoire. Partnering with others who are more experienced and who can provide mentorship can be a valuable strategy. Reading reports of research studies that have utilized qualitative methods can provide insights and ideas for personal use; such papers are routinely included in traditional databases accessed by pharmacists. Engaging in dialogue with members of a research ethics board who have qualitative expertise can also provide useful assistance, as well as saving time during the ethics review process itself. The references at the end of this paper may provide some additional support to allow you to begin incorporating qualitative methods into your research.

CONCLUSIONS

Qualitative research offers unique opportunities for understanding complex, nuanced situations where interpersonal ambiguity and multiple interpretations exist. Qualitative research may not provide definitive answers to such complex questions, but it can yield a better understanding and a springboard for further focused work. There are multiple frameworks, methods, and considerations involved in shaping effective qualitative research. In most cases, these begin with self-reflection and articulation of positionality by the researcher. For some, qualitative research may appear commonsensical and easy; for others, it may appear daunting, given its high reliance on direct participant– researcher interactions. For yet others, qualitative research may appear subjective, unscientific, and consequently unreliable. All these perspectives reflect a lack of understanding of how effective qualitative research actually occurs. When undertaken in a rigorous manner, qualitative research provides unique opportunities for expanding our understanding of the social and clinical world that we inhabit.

Further Reading

• Breakwell GM, Hammond S, Fife-Schaw C, editors. Research methods in psychology. Thousand Oaks (CA): Sage Publications Ltd; 1995. [ Google Scholar ]
• Strauss A, Corbin J. Basics of qualitative research. Thousand Oaks (CA): Sage Publications Ltd; 1998. [ Google Scholar ]
• Willig C. Introducing qualitative research in psychology. Buckingham (UK): Open University Press; 2001. [ Google Scholar ]
• Guest G, Namey EE, Mitchel ML. Collecting qualitative data: a field manual for applied research. Thousand Oaks (CA): Sage Publications Ltd; 2013. [ Google Scholar ]
• Ogden R. Bias. In: Given LM, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks (CA): Sage Publications Inc; 2008. pp. 61–2. [ Google Scholar ]

This article is the seventh in the CJHP Research Primer Series, an initiative of the CJHP Editorial Board and the CSHP Research Committee. The planned 2-year series is intended to appeal to relatively inexperienced researchers, with the goal of building research capacity among practising pharmacists. The articles, presenting simple but rigorous guidance to encourage and support novice researchers, are being solicited from authors with appropriate expertise.

Previous article in this series:

Bond CM. The research jigsaw: how to get started. Can J Hosp Pharm . 2014;67(1):28–30.

Tully MP. Research: articulating questions, generating hypotheses, and choosing study designs. Can J Hosp Pharm . 2014;67(1):31–4.

Loewen P. Ethical issues in pharmacy practice research: an introductory guide. Can J Hosp Pharm. 2014;67(2):133–7.

Tsuyuki RT. Designing pharmacy practice research trials. Can J Hosp Pharm . 2014;67(3):226–9.

Bresee LC. An introduction to developing surveys for pharmacy practice research. Can J Hosp Pharm . 2014;67(4):286–91.

Gamble JM. An introduction to the fundamentals of cohort and case–control studies. Can J Hosp Pharm . 2014;67(5):366–72.

Competing interests: None declared.

• Open access
• Published: 17 June 2024

Cognition of diet quality and dietary management in elderly patients with coronary and other atherosclerotic vascular disease in western China, a qualitative research study

• Jiamengying Chen 1   na1 ,
• Xiaojie Li 1   na1 ,
• Yun Wang 2 ,
• Chunling Zhang 3 ,
• Li Yang 3 ,
• Lvheng Zhao 1 ,
• Qingqing Zhu 1 ,
• Li Wang 4 &
• Yixia Zhou 1 , 2  

BMC Geriatrics volume  24 , Article number:  525 ( 2024 ) Cite this article

99 Accesses

Metrics details

Healthy eating is one of the most important nonpharmacologic treatments for patients with atherosclerosis(AS). However, it is unclear how elderly AS patients in western China perceive their dietary status and which type of nutritional assistance they would be willing to receive. Therefore, the primary purpose of this study was to understand the level of knowledge about current dietary habits and healthy eating habits among elderly AS patients in western China, and the secondary purpose was to identify acceptable nutritional assistance measures or pathways for those patients to help them manage disease progression.

An implementation study approach was used to recruit elderly patients with AS-related diseases in western China for semistructured interviews.

14 participants were included in the study, and the following three themes were identified from the interviews:(1) the diet with regional characteristics; (2) low nutrition-related health literacy; (3) complex attitudes towards nutritional assistance. Most participants had misconceptions about healthy eating, and the sources of their knowledge might not be trustworthy. Participants expressed a preference for personalized nutritional assistance, especially that provided by medical-nursing combined institutions.

Patients in western China need nutritional assistance for their regional dietary habits; therefore, healthy dietary patterns consistent with the regional culture are proposed to improve the prevailing lack of knowledge about healthy diets, improve the dietary structure of patients, and control the development of the disease.

Peer Review reports

Patients generally misunderstand dietary information, and their perceptions of dietary quality are different. With improvements in people’s living standards and a general lack of exercise, the incidence of atherosclerosis (AS) is increasing annually. The main incidence group is still the elderly population [ 1 ], and this disease has brought a greater economic burden to people and medical systems [ 2 ].

Poor eating habits are a definite risk factor for AS and one of the important risk factors associated with the burden of cardiovascular disease (CVD) [ 3 ]. In 2016, 2.1 million global deaths from CVD were linked to poor eating habits [ 4 ]. Many studies had shown that most people with AS have poor diet quality and poor knowledge of healthy diets [ 5 ]. Global comparative risk assessment studies have estimated that hundreds of thousands or even millions of deaths in patients with CVD can be attributed to the effects of certain diets and environments [ 6 ]. In China, many scholars had investigated the dietary behaviour of patients with AS. With the further development of the economy and the steady increase in the degree of urbanization [ 7 ], Chinese consumption of fruits, dairy products, snacks, fast food and beverages is increasing significantly, and the dietary pattern is gradually shifting to a high-fat Western diet [ 8 ]. This tendency may be closely related to the increasing incidence of AS-related diseases. China is a vast country, which leads to different eating habits among people in different regions. A study of 11,512 respondents in 47 provinces of China showed that the mortality rate of CVD in the central and western regions was greater than that in the eastern provinces of China, and poor eating habits were one of the risk factors for death. However, we found that the current research is still targeting individuals living in the eastern and northern regions of China [ 9 ]. There is a lack of surveys on people in western China, which may lead to a lack of targeted and personalized nutritional assistance for this population [ 10 ].

Nutritional assistance methods include providing relevant dietary advice [ 11 ], diet intervention measures [ 12 ], diet patterns [ 13 ], nutritional supplements [ 14 ], etc. In previous studies, health education related to diet management has been shown to effectively improve the disease awareness of patients with AS and to have a positive impact on some of its indicators, such as blood lipid levels and body mass index [ 15 ]. Before designing interventions, some investigators did not consider whether participants were willing to accept nutritional assistance, and they lacked an understanding of the participants’ daily life [ 16 ]. Moreover, researchers and clinical staff may be biased against interventions recognized by patients [ 17 ]. The incorporation of the perspective of patients can help researchers explore new interventions or discover new understandings of existing interventions to form higher-quality research. Understanding local eating habits in advance can also help researchers better identify the possible bad eating behaviours of the target group and develop more targeted interventions [ 18 ].

The main purpose of this study was to explore the views of patients with coronary and other atherosclerotic vascular diseases in western China on dietary quality and previously received dietary recommendations or nutritional assistance. The secondary purpose was to determine which nutritional assistance methods are acceptable for these patients to help them improve their health management.

Qualitative approach & research paradigm

This was a qualitative study, and we used a semistructured interview method. Mainly, we discussed how patients with coronary and other atherosclerotic vascular diseases viewed their dietary habits and intake, as well as their views on various nutritional assistance methods and approaches, and explored their feelings and expectations regarding nutritional assistance.

Researcher characteristics and reflexivity

Two researchers (Li Wang, Yixia Zhou) were responsible for the research design, and 1 researcher (Li Yang) who had a clinical nurse–patient relationship with the interviewees recruited and screened participants with the assistance of 3 researchers (Lvheng Zhao, Qingqing Zhu, Yun Wang). Two researchers (Jiamengying Chen, Xiaojie Li) conducted patient interviews under the supervision of a nutrition expert (Chunling Zhang) and entered and analysed the data. A total of 9 researchers participated in this study, all of whom had research/work backgrounds related to nutrition or CVD.

From March 2023 to June 2023, elderly people who visited 3 medical institutions in Guizhou Province, China, were selected as interviewees using purposive sampling methods. The average number of elderly people in the 3 medical institutions is approximately 80 per week. A stable medical team provides medical security and regularly carries out cardiac rehabilitation and other services.

Sampling strategy

The inclusion criteria for patients were as follows: (1) \(\ge\) 60 years old; (2) diagnosed with coronary or other atherosclerotic vascular disease [ 19 ]; (3) clear thinking, able to speak Chinese fluently, including Mandarin or dialect; and (4) signed written informed consent form to voluntarily participate in the study. The exclusion criteria were as follows: (1) cognitive impairment, (2) communication barriers.

After ethical review, posters were placed in cardiovascular clinics and nutrition clinics of medical institutions to recruit volunteers to participate in the study. Information on the poster included the purpose of the study, inclusion and exclusion criteria, and contact information for the principal investigator (Jiamengying Chen, Xiaojie Li). The posters were posted from February 2023 to May 2023, and 16 elderly patients with AS were invited to participate. Due to data saturation, a total of 14 elderly patients with AS were finally interviewed and numbered P1 to P14.

Before beginning the study, the researchers invited potential participants, explained the purpose and methods of the study to the participants who were willing to participate in the study, and interviewed the participants with their consent.

Ethical issues pertaining to human subjects

Before the start of the study, the research team provided written informed consent forms to the eligible participants. This study was approved by the the Ethics Committee of The Second Affiliated Hospital of Guizhou University of Traditional Chinese Medicine (No.: KYW2022007).

Data collection and instruments

Participants participated in research interviews from March 2023 to June 2023. The interviews were conducted in a separate lounge of the medical institutions to ensure participants’ privacy. After obtaining the participants’ consent, the researchers recorded the entire interview, and all recordings were obtained using the same electronic device. All participants were interviewed by the same researcher and supervised by the chief nurses on the research team. The participants had the right to know the educational level, professional title and other information about the researchers.

According to the purpose of the study, the members of the research group conducted a literature review in advance, discussed and formulated the interview outline, and conducted a pre-interview with 2 participants in advance. According to the interview results, the outline was modified, and the interview outline applied in this survey was finally determined. The interview outline consisted of open and closed questions. The main topics of discussion were the participants’ views on the current quality of their diet, whether they feel that their diet should be improved, and whether they were willing to accept medical assistance related to diet management. In addition, the researchers asked participants whether they had received diet-related or nutritionist guidance.

At the end of the interview, the researchers listed many types of nutritional assistance or approaches to participants and asked them to provide preferences for each type of nutritional assistance or approach. Before the interview, the researchers used a warm-up question to create a friendly atmosphere between the interviewer and the interviewee: “If you do not mind, could you tell me something about your AS-related disease?”

Clinical measures

The researchers collected information such as the participants’ age, sex, and types of disease. This information was collected to provide a sufficient sample description and determine whether there was heterogeneity.

Units of study

In this study, the saturation of data collection was used as the end point of the interview process; that is, if the data analysis was repeated with the previous data, and no new coding appeared, then the interview process was considered to be completed. After data saturation, 2 participants were interviewed to ensure that no new coding appeared [ 20 ]. The interview time ranged from 11 minutes and 08 seconds to 27 minutes and 35 seconds, with an average time of 17 minutes and 42 seconds.

Data processing

During the interview, the researcher recorded the patient’s intonation, speech rate, expression, gesture and so on. To reduce the researchers’ memory bias, the recordings were converted into text within 24 hours after the end of the interview and supplemented and modified in combination with the notes of on-site observation [ 21 ] .

Data analysis

This study was conducted by 2 researchers (Jiamengying Chen, Xiaojie Li) using the Colaizzi seven-step method of phenomenological research to guide the data analysis. The 2 researchers independently and repeatedly listened to the audio recordings of the interviews, verified the content, and ultimately analysed the data separately.

During the study, the researcher verified unclear statements in the recordings by contacting the respondent via WeChat or telephone. In addition, the transcribed notes and the themes generated from the analysis were confirmed with the interviewees to ensure that their views were authentically recorded. After the information was completed for thematic extraction and coding, the research team held 1 team meeting to review it. All the researchers commented on and ultimately agreed on the themes and coding of the interviews.

Participant characteristics

Fourteen elderly patients with atherosclerotic vascular disease, with an average age of 75 years, were included in the study. Five participants were male, and 9 participants were female. The disease categories included coronary atherosclerotic heart disease, cerebral infarction, and carotid atherosclerotic plaque. Participant information is shown in Table 1 .

The results of this study show the acceptability of the current dietary status, the understanding of previous nutritional assistance, and the methods of future nutritional assistance in elderly patients with AS-related diseases in western China. The following 3 themes emerged from this study: (1) the diet with regional characteristics; (2) low nutrition-related health literacy; (3) complex attitudes towards nutritional assistance.

The diet with regional characteristics

In terms of staple food preferences, most of the elderly people included in this study claimed that they consumed rice vermicelli for breakfast and lunch because it is “easily digestible” (P3, female, 71 years old). They liked to add animal fats when eating rice vermicelli or noodles (especially ChangWang noodles from Guizhou, China), even if they knew that animal fats can be harmful to the body. These animal fats included solid animal fats and fried animal fats (known as CuiShao) to increase the flavour of the food. Another common breakfast choice among these participants was steamed glutinous rice with chili oil, soy sauce and a variety of side dishes, including “CuiShao”, bacon or sausage, fried peanuts and so on. The family members met the participants’ requests and provided them with this type of food.

“I eat either rice vermicelli or ChangWang noodles every morning. Sometimes (I) do not want to go downstairs, and I let my son or daughter bring it back to me. I think ChangWang noodles need a lot of “CuiShao” to be delicious.”

(P14; Male, 73 years old)

Some participants also said that they were not keen on eating refined rice products or noodles but preferred coarse grains, mainly including “corns, sweet potatoes, and potatoes, because this state produces potatoes” (P8; Female, 66 year old). The discussed cooking methods for the potatoes mainly including frying, fire baking and stir-frying.

“I liked to eat potatoes when I was young, and I also like to eat them now. When I was younger, I would bake my potatoes, but now I prefer fried potatoes.”

(P12; Male, 81 year old)

Some male participants favoured alcohol. They mainly consumed Chinese Baijiu, but all of them reduced their alcohol consumption after learning that they suffered from AS-related diseases. Female participants widely mentioned that they would like to drink Chinese rice wine (Mijiu) (especially homemade) rather than Chinese Baijiu and considered Chinese rice wine (Mijiu) consumption a habit that “everyone in Guizhou should have” (P9; Female, 83 year old).

“I used to drink at least 100 ml of Chinese baijiu; after learning that I was sick, I quit drinking.”

(P13; Male, 64 year old)

Most participants believed that their dietary intake was healthy, while some participants said that after the diagnosis of AS-related diseases, they consciously chose to eat more vegetarian foods, such as ‘Suguadou’, a specialty of Guizhou Province, China, and avoid consuming animal fats.

“After I got sick, I gained some knowledge from the newspaper and TV. It was said that eating a vegetarian diet is good for my health. [Now] I eat a vegetarian diet and do not eat chicken, duck or fish.”

(P2; Female, 61 year old)

Other participants said that they liked and frequently ate “red sour soup”, a Chinese Guizhou specialty, 2 to 3 times a week, or even more frequently. They cooked “red sour soup” in dishes by adding water or soup stock and boiled freshwater fish, lean meat and vegetables. They expressed their preference for ethnic-specific eating habits, and even if they chose to eat out, they would more frequently choose restaurants that sell “red sour soup” because “fish is easy to digest for elderly individuals, so we eat fish in sour soup at restaurants, and we like that too” (P13; Male, 64 year old). Some participants expressed their recognition of the simple cooking method of “red sour soup”. Many participants mentioned their decreasing food intake after entering old age, and they indicated that “I cannot eat much, and they say that the amount of one meal I eat is equal to the amount of one meal that a cat eats” (P4; Female, 77 year old), emphasizing “You need to eat something sour to get an appetite” (P3; Female, 71 year old).

“People in Guizhou should eat red sour soup; I have to eat it several times a week.”

(P11; Male, 82 year old)

For the intake of fruit, many participants thought that fruit consumption was a treat because their family or caregivers did not allow them to eat too much other food outside of dinner, and being provided with fruit could make them feel happy. “They did not allow me to eat too much fruit, and every time I ate fruit, they were worried that my blood sugar would rise” (P1; Female, 90 year old). The participants usually actively discussed their preferences for fruits, including buying their favourite fruits at the market or asking their caregivers to provide some fruits. Some participants mentioned that they liked to drink rosa roxburghii Tratt (RRT) juice or directly ate sliced fresh RRT for “vitamin C supplementation” (P9; Female, 83 year old).

“This plant [RRT] was widely cultivated in my hometown, and when it was ripe, we picked the fruit and ate it. It became a habit!”

(P7; Male, 80 year old)

Low nutrition-related health literacy

Most of the participants did not receive professional nutritionist consulting services and did not know that the hospital had nutrition-related departments. Some participants mentioned that when visiting a hospital, doctors or nurses mentioned diet-related knowledge, such as avoiding a greasy diet and not eating animal fats, but rarely explained the reasons.

“Nutrition department? The hospital has this department?” I do not know what to eat, so the doctor told me, ‘eat less oil and less salt.’ However, he did not tell me why”.

(P3; Female, 71 year old)

The majority of participants stated that they could use the internet to gain much knowledge about healthy eating patterns. In addition to professional notification, participants also obtained diet-related knowledge through newspapers, television, online short video publicity, family notification, etc. “(I) watched many of these kinds of videos on my telephone” (P5; Female, 62 year old). However, they had no way to tell whether the information was correct These information sources contained contradictory content, which made participants unable to distinguish the correctness of the information. Other participants said that they could not learn diet-related knowledge through commonly used health education methods, such as public accounts, videos, and brochures, in tertiary hospitals due to the degradation of vision and hearing caused by age.

“I’m old, my eyesight is poor, and I cannot see with my glasses! I also want to read the brochure [on nutrition], but I cannot see it clearly”.

Most participants could list the relevant nutritional knowledge they knew, and they also performed a small number of healthy eating behaviours, such as the most basic behaviours: quitting smoking and drinking. They believed that the implementation of a healthy diet contributes to recovery from the diseases.

“I stopped smoking or drinking after I got sick! I know that these [cigarettes, alcohol] are not good for the body” .

Some participants blindly implemented diet-related knowledge after acquiring it. These participants believed that consuming dietary supplements can ensure good health, so visiting medical institutions was unnecessary. They thought that the greater the intake of dietary supplements, the better the body they would have, even if their health might be harmed by excessive intake.

“I hardly go to the hospital because I eat a lot of health supplements; my body is fine, and I am fine”.

(P8; Female, 66 year old).

Although in medical institutions, participants received health education on diet-related knowledge, not all patients were able to effectively implement the information. Some patients were not willing to implement the recommended healthy eating patterns, and they did not want to change their preferences. The participants had different understandings of healthy eating patterns. Some participants were aware of systematic dietary patterns that they described as “good” but “difficult to implement” (P2; Female, 61 year old). Others described these eating patterns as “unpalatable”. A common view is that the ingredients of these dietary patterns are difficult or inaccessible to them.

“No, no, [they want me to] eat so many vegetables, like I am a rabbit! I have maintained my eating habits for so many years and cannot change them. These diets are weird; I do not eat avocados, I do not eat oats. If I can live to be a hundred years old if I eat these things, then I would rather die at age eighty”.

(P1; Female, 90 year old)

In addition, many participants said that doctors and nurses could not monitor whether they consumed a healthy diet after leaving hospitals. It is difficult to follow a healthy diet after discharge, especially when most patients and their families do not have a medical background.

“After I was discharged from the hospital, they [the doctors and nurses] did not know what I was eating at home. Doctors and nurses are very busy with work; how can there be time to help us with our eating?”

Complex attitudes towards nutritional assistance

Participants generally expressed fear of diseases. They said, “This disease will stay with me for the rest of my life, and I cannot cure it” (P12; Male, 81 year old). These participants elaborated on their desire to become healthier through nutritional assistance, and they also tended to be more willing to receive dietary-related guidance and assistance and viewed the role of nutritional assistance in delaying the development of AS positively. Personalized nutritional assistance received a positive response from the participants, and they were willing to try nutritional assistance that would help them.

“I dare not to do anything when I suffer from this disease because I fear that something will happen to my blood vessels..... Of course, it is good to be able to eat healthier; people live to eat three meals a day. If the meal tastes good and the body can be healthy, then I will wake up laughing in my dreams” .

The vast majority of participants expressed their willingness to use customized recipes, diet lists, etc., but the implementation process required the understanding and support of their families. Two male participants said that “My wife is the head of the family”, and whether to use custom recipes and diet lists required the cooperation and consent of his wife. Other patients said that because they are old, whether they could cook according to the recipe required the cooperation of their sons and daughters or caregivers (paid by the elderly individuals themselves or their families).

“We are all old and need help with daily activities such as eating and dressing. Some things require children’s help to achieve”.

(P6; Female, 81 year old)

Some participants were not very skilled in the operation of electronic devices such as telephone, computers, or televisions. They also suffered from diseases that caused them to be unable to use communication devices such as telephone. Therefore, they could not receive online health education. They only accepted one-to-one or one-to-many nutritional assistance methods that were held offline. However, some participants mentioned that they would selectively adopt the nutritional recommendations made in the meetings for the public because “not all of them suit me” (P1, female, 90 years old). Other participants suggested that they prefer to use remote online methods for meetings because they “do not have the time or energy to attend the meeting, and it is not safe if the meeting place is far away” (P7; Male, 80 year old); they were worried about traffic safety between hospitals and therefore could not attend the meetings.

“I am old, and I have no idea how to use telephone or computers for online meetings. So, I prefer offline meetings where we do whatever the doctors and nurses say” .

(P14; Male, 73 year old).

Some participants were more likely to take dietary supplements such as vitamins rather than considering other forms of nutritional assistance first. Other participants had their own views on dietary supplements; they might try to consume fresh or “medicinal” (P1; Female, 90 year old) ingredients instead of the dietary supplements prescribed by their doctors. Due to the severity of AS-related diseases, these participants were willing to receive various forms of nutritional assistance. Other participants expressed that they had too much concern and distrust regarding the use of dietary supplements. Some participants were worried about the interaction between dietary supplements and the drug treatment they were currently receiving, while other participants thought that were already using too many oral drugs, and whether dietary supplements were useful was uncertain.

“There are a lot of bad people [selling dietary supplements] now, and it is hard to identify who is good and who is bad”.

Some participants showed the opposite attitude towards nutritional assistance; they believed that they were old enough to receive intervention for their diet. Regarding the malignant cardiovascular events, cerebrovascular events, and amputations that could result from AS-related diseases, these participants stated that they “did not know and did not understand how it could be so serious” (P9; Female, 83 year old).

“I’m so old, I should eat what I want to eat” .

Most of the participants expressed their willingness to try nutritional assistance measures, which were considered beneficial for delaying the development of AS, including medical-nursing combined institutions that could provide them with a diet, but those facilities put forwards higher requirements on the price and quality of the meals. If they did not meet the requirements, they would not choose this nutritional assistance measure.

“The community should do something practical for us old people. We will eat what is good, and we do not eat what is bad”.

Some participants said they were concerned about the price of the diet provided by the medical-nursing combined institutions and were worried about their economic situation. When their income was not enough to pay for the diet provided by the medical and nursing institutions, they would not choose this method. Less income had taken away their freedom of consumption.

“We are all rural people, we have no income, and the cost of eating out is equal to the cost of a few days of our daily life..... If the food is very expensive, we will definitely be unwilling to eat it” .

The results of this study showed the acceptability of the current dietary status, the understanding of previous nutritional assistance, and the methods of future nutritional assistance in elderly patients with AS-related diseases in western China. The theme generated in this study shows that the factors affecting dietary status are multifaceted and complex, and the participants’ dietary preferences had obvious regional characteristics.

The first theme generated by this qualitative research is that the diet with regional characteristics. In this topic, we explored the relationship between participants and their food choices. We found that the participants’ diets had strong regional characteristics, reflecting the regional characteristics of the provinces in western China. The diagnosis of AS-related diseases resulted in some patients changing their eating habits, following the health education of doctors or nurses and choosing to limit alcohol consumption and eat more vegetables. For other participants, there were some difficulties in adhering to healthy eating habits; for example, the tastes and dietary preferences formed during perennial life are difficult to change. The second theme was centred on the implementation of nutritional assistance by participants. We measured participants’ understanding and implantation of knowledge about a healthy diet, which reflected their general misunderstanding of healthy diet knowledge. The third theme was that attitudes towards nutritional assistance were complex; we summarized the participants’ attitudes towards a variety of nutritional assistance approaches. Research has shown that most participants were welcoming and receptive to nutritional assistance, but other patients expressed a resistant attitude. Some participants highlighted their concerns about the price of food.

The participants discussed their current dietary intake with the researchers. In this component of the study, the participants’ dietary preferences showed obvious regionality. This study showed that the mainstream staple food choices for elderly patients with AS-related diseases in western China include rice (including refined rice and its products), glutinous rice, and some coarse grains, such as potatoes and corn. Such staple food choices were suitable for local geographical conditions but might adversely affect the health of participants. Rice products, such as rice vermicelli, were one of the main food choices that participants were interested in. They often mentioned mutton rice vermicelli, beef rice vermicelli, chili chicken rice vermicelli and so on. Most commonly, rice vermicelli and noodles were cooked in boiling water and then put into seasoned broth. Studies have shown that cooked rice flour is a moderate-GI food [ 22 ], and a higher GI index has been shown to be significantly associated with an increased risk of CVD [ 23 ]. Postprandial hyperglycaemia can lead to elevated triglycerides and increased oxidative stress, which have a negative impact on the vascular endothelium [ 24 ].

The participants often mentioned “Cuishao”, bacon, sausage, and fried peanuts. Cuishao is a unique snack and was popular among people living in Guizhou Province, China. Pork (i.e., pork belly meat with more adipose tissue mixed with lean meat) was used as the raw material, and seasonings were added to marinate and then fry the meat. The fried “Cuishao” contained a large amount of oil. Excessive intake of oil can cause a variety of adverse effects on health and may lead to a greater risk of disease, including hypertension, AS and cancer [ 25 ]. During the frying process, a series of chemical reactions, such as the oil oxidation reaction, Maillard reaction and oxidative degradation of proteins, occur in the matrix of fried meat products. These chemical reactions lead to the production of harmful substances, such as trans fatty acids (TFAs), in fried meat products [ 26 ]. Studies have shown that excessive intake of TFAs promotes vascular inflammation and oxidative stress and accelerates the development of AS [ 27 ]. Numerous academic organizations have recommended that the intake of saturated fatty acids and TFAs should be limited to regulate blood lipid levels in high-risk populations [ 28 ]. Importantly, even though the potatoes that people in western China like to eat are a good source of carbohydrates [ 29 ], the frying cooking method leads to an increase in the risk of noninfectious diseases such as CVD and diabetes by affecting inflammatory factors and vascular endothelial function [ 30 ]. This showed that when designing a diet plan for patients with AS-related diseases in western China, the patients should be asked to limit their intake of fried, high-fat foods, even if they like to eat these foods.

Most participants took the initiative to adjust their diet after being diagnosed with the disease. Some participants indicated that they had actively chosen a vegetarian diet or consciously tended to eat vegetables and fruits. People in western China often use boiled water to cook vegetables when they choose to eat vegetables and form a local characteristic dish, “Suguadou”. Commonly consumed vegetable types included kidney beans, immature pumpkin. Studies have shown that the choice of cooking method is related to cardiovascular risk factors. In addition to raw food, boiling is also a healthier cooking method, which is related to healthier cardiovascular conditions [ 31 ]. Boiled cooking methods could also better retain antioxidant compounds in vegetables. We found that people in western China like to eat a seasonal fruit called RRT in summer. This fruit is a medicinal plant and traditional food in western China. In recent years, studies have shown that RRT is rich in vitamin C [ 32 ]. The presence of other substances (organic acids, flavonoids, polyphenols, etc.) can improve dyslipidaemia through the intestinal flora [ 33 ]. Therefore, eating RRT or drinking freshly squeezed fruit juice might improve AS-related diseases.

In addition, people in western China were also keen to eat “red sour soup”. “Red sour soup” is a common fermented seasoning in Guizhou Province, China. It is mainly fermented with “Maolaguo”, red peppers, etc., followed by the addition of Litsea cubeba fruit essential oil [ 34 ]. People often use “red sour soup” to cook vegetables, lean meat slices, fish slices and so on. Studies have shown that “red sour soup” can alleviate nonalcoholic fatty liver disease induced by a high-fat diet in rats and reduce body mass index, total cholesterol, triglyceride, and insulin resistance [ 35 ]. According to a study by Yang et al. [ 36 ], red sour soup can prevent and treat hyperlipidaemia in obese rats by regulating the AMPK signalling pathway, which might be related to the antioxidant and anti-atherosclerotic effects of lycopene and capsaicin, which are abundant among the red sour soup raw materials [ 37 ].

Studies have shown that the fermentation process of red sour soup will produce beneficial bacteria such as Lactobacilli, Acetobacter , and Leuconostoc and acid substances such as lactic acid, acetic acid and citric acid [ 38 ]. These acids regulate inflammation and promote immunity, neuroprotection, and anti-ageing activity [ 39 ]. However, the impact of food as a whole on the health of organisms rather than the impact of a single component of food [ 40 ] should be noted. Therefore, it is necessary to comprehensively consider the impact of red sour soup on human health; that is, the beneficial effects of red sour soup on human health are due to its rich bioactive substances and beneficial components produced during fermentation.

Notably, some male participants mentioned frequent consumption of alcohol. Studies have shown that higher alcohol intake increases the risk of CVD mortality in Chinese men and that alcohol intake does not have a protective effect on CVD [ 41 ]. Although participants might reduce or stop consuming alcohol after the diagnosis of AS-related diseases, past studies have shown that patients who continue to drink alcohol have a similar risk of death to those who have quit [ 42 ]. This suggested that the harm caused to the human body by alcohol consumption is permanent, even if the patient has chosen to quit drinking alcohol.

This study revealed that participants generally lack healthy eating knowledge. Research has shown that among participants, there is a widespread bias towards certain types of food and a misconception regarding nutritional assistance. A survey of elderly individuals [ 43 ] revealed similar findings; for example, some participants believed that “thin” is healthy and “fat” is unhealthy, and they believed that fat, sugar, etc., are “bad” foods and prefer vegetarian food [ 44 ]. However, studies have shown that proper fat intake is beneficial to human health, and people should consume a certain amount of high-quality fat and reduce saturated fat intake [ 45 ]. The intake of omega-3 fatty acids had some benefits for participants with cardiovascular and cerebrovascular diseases [ 46 ]. Many studies have shown that a plant-based diet can promote vascular endothelial protection and reduce the generation of harmful factors in endothelial cells, which is beneficial for treating AS-related diseases [ 47 ]. A meta-analysis of 55 studies showed that compared to other eating patterns, plant-based diets and whole-grain foods are associated with better prevention of coronary heart disease and multiple metabolic diseases [ 48 ]. However, it is worth noting that even though plant-based diets have been shown to be beneficial to human health, all dietary patterns are associated with potential nutritional risks [ 49 ]. Studies have shown that long-term intake of a vegan diet may lead to a lack of micronutrients, resulting in potential nutritional risks [ 50 ]. Therefore, for elderly patients with AS-related diseases, dietary guidance should include prompting patients to choose a balanced diet, consuming abundant plant-based foods, and correcting their misunderstanding regarding their current dietary patterns.

In contrast, there were also some participants who had received relevant health education, but the information provided by the internet may conflict with it, making it difficult for them to consume a healthy diet. Numerous studies have shown that the quality of health-related information that patients can learn on the internet is mixed [ 51 ]. Many sources of information were nonprofessionals who had not received medical professional training, which leads to mixed and inaccurate or biased information that may mislead patients and even have a negative impact on their health [ 52 ]. However, even if there was erroneous or unconfirmed information, viewing internet videos was still a popular method of health education for patients. Health education, in which professional people use networks, can significantly improve patients’ compliance behaviour and reduce costs [ 53 ]. However, in this survey, some participants were unable to obtain health knowledge by reading or watching videos because of old age, illness or disability. At the same time, some participants suggested that after leaving the medical environment, doctors or nurses could not guide and supervise their diet, which led them to collect relevant health knowledge in other ways, and their compliance behaviour gradually decreased over time. Doctors or nurses should carry out continuous and personalized health education for patients. Notably, only providing advice on improving diet and activity behaviours is not enough to change and maintain these behaviours in the long run. Effective health education that supports behavioural changes requires effective incentives and promotion, including environmental support [ 54 ], and provides patients with intervention methods suitable for their culture, age and other characteristics [ 55 ].

The majority of participants accepted nutritional assistance. Our survey showed that elderly participants with AS-related diseases need personalized nutritional assistance to improve their physical condition. In addition to the need for nutritional assistance, they also need corresponding dietary support from the government or institutions because the diseases limits their physical movement [ 56 ]. At the same time, because of the decline in functional living ability, many participants showed dependence on their families. This finding was consistent with most studies [ 57 ]. With the widespread promotion of medical-nursing combinations in China, meals are increasingly being prepared by medical-nursing combined institutions rather than by the patients themselves, community health service institutions, etc., to improve diet quality. Based on the patient interviews, we found that the nutritional assistance provided by medical-nursing combined institutions may be more suitable for and accepted by elderly patients with AS-related diseases. Medical-nursing combined institutions could help elderly people with full and partial disability to solve the problems of meals, medical treatment and self-care at a lower cost. In some European and American countries, there have been similar nutritional assistance models for elderly people, but most of them involve modelled nutrition management, such as communities providing three meals a day to elderly people in the form of meal boxes. However, this intervention model cannot be used for personalized service [ 58 ].

In contrast, some participants thought that they did not need to receive nutritional assistance. They held the mentality of ‘being so old’ and had a resistant and unacceptable attitude towards nutritional assistance. This might be because they think they were old enough to no longer have to put much effort into fighting the death caused by the diseases. This study revealed that elderly people with increasing age are becoming increasingly more deeply aware of the limitations of their lives. They could accept death as an inevitable event and reduce their avoidance of death [ 59 ]. However, it should be noted that the participants’ lack of healthy diet knowledge may have led them to mistakenly believe that diet cannot significantly improve the clinical manifestations of AS-related diseases, so they still maintain unhealthy eating habits and refuse to perform healthy lifestyles. Moreover, these participants might underestimate the consequences of poor lifestyles, resulting in serious cardiovascular events, including vascular obstruction and vascular rupture. These conditions might lead to paralysis, dysphagia and other symptoms, which would result in reduced or even loss of self-care ability and a significant reduction in quality of life [ 60 ].

This study has several limitations. The research team tried to recruit participants with heterogeneous characteristics, including age, sex, family status, and education level. However, due to the purposive sampling method, the results of this study may not be extended to the wider Chinese or international population of elderly patients with coronary and other atherosclerotic vascular diseases. This study excluded individuals who did not speak Chinese. Therefore, we cannot determine whether the samples of this study included multicultural or multiethnic groups.

This study showed that elderly patients with coronary and other atherosclerotic vascular diseases who are living in western China have regional dietary preferences, which may have a certain impact on their disease development. They have different views due to differences in sex, disease status, personal habits, and modes of receiving dietary knowledge. These views are mainly regarding their own dietary status, cooking behaviours, and dietary management models. Regional and individual differences may influence the effects of diet management. In the future, for research regarding the dietary management of elderly patients with coronary and other atherosclerotic vascular diseases in western China, researchers should conduct personalized and sex-specific dietary management interventions according to their regional dietary preferences and consider whether individual patients are able to receive relevant nutritional assistance. Medical and nursing combination institutions can provide them with modelled nutrition management, such as providing three meals in the form of lunch boxes or open canteens. They can also use a variety of methods, such as face-to-face conversations and meetings, to provide them with dietary advice and flexibly use the internet to achieve online intervention. Changes in dietary behaviour may have a positive impact on the overall dietary quality of this population and may improve the patient’s disease status and prognosis.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due ethical reasons but are available from the corresponding author on reasonable request.

Abbreviations

• Atherosclerosis

Cardiovascular Disease

rosa roxburghii Tratt

Tras Fatty Acid

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Acknowledgements

We would like to thank all the participants in this study for their willingness to participate in this study and to express their views honestly.

This research was funded by the following projects: nsfc-funded project-The mechanism of MCPIP1 regulating Myocardin in vascular smooth muscle cells on atherosclerosis (No.82160099); Science and Technology Plan Project of Guizhou Province-Construction and Application of Internet of Things + Traditional Chinese Medicine Characteristic Intelligent Health Care System (No.Qiankehe support [2022] generally 263); Guizhou Provincial Health Commission Project (No.WJW-llc-H2021(11-01)).

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Jiamengying Chen and Xiaojie Li contributed equally to this work.

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Nursing School, Guizhou University of Traditional Chinese Medicine, Guiyang City, Guizhou Province, China

Jiamengying Chen, Xiaojie Li, Lvheng Zhao, Qingqing Zhu & Yixia Zhou

Nursing School, Guizhou Medical University, Guiyang City, Guizhou Province, China

Yun Wang & Yixia Zhou

The Second Affiliated Hospital, Guizhou University of Traditional Chinese Medicine, Guiyang City, Guizhou Province, China

Chunling Zhang & Li Yang

School of Nursing, Suzhou Medical College of Soochow University, Suzhou City, Jiangsu Province, China

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Data curation, J.C., X.L., Y.W. and L.Z.; Investigation, J.C., X.L. and Q.Z.; Methodology, Y.Z. and L.W.; Interviewees recruited, C.Z., L.Y., L.Z, Q.Z. and Y.W.; Writing original manuscript, J.C.; Revised the manuscript, X.L. and L.W.

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Correspondence to Li Wang or Yixia Zhou .

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This study was conducted according to the Helsinki Declaration and approved by the Ethics Committee of The Second Affiliated Hospital of Guizhou University of Traditional Chinese Medicine. No.KYW2022007. Participants were fully informed about the study’s purpose, procedures. Participants’ personal information and data were kept confidential. If disclosure is required, it is carried out in accordance with the requirements of legal and ethical guidelines.

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Chen, J., Li, X., Wang, Y. et al. Cognition of diet quality and dietary management in elderly patients with coronary and other atherosclerotic vascular disease in western China, a qualitative research study. BMC Geriatr 24 , 525 (2024). https://doi.org/10.1186/s12877-024-05058-2

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Received : 27 September 2023

Accepted : 08 May 2024

Published : 17 June 2024

DOI : https://doi.org/10.1186/s12877-024-05058-2

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