qualitative literature review

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Qualitative research: literature review .

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Exploring the literature review 

Literature review model: 6 steps.

Adapted from The Literature Review , Machi & McEvoy (2009, p. 13).

Your Literature Review

Step 2: search, boolean search strategies, search limiters, ★ ebsco & google drive.

1. Select a Topic

"All research begins with curiosity" (Machi & McEvoy, 2009, p. 14)

Selection of a topic, and fully defined research interest and question, is supervised (and approved) by your professor. Tips for crafting your topic include:

• Be specific. Take time to define your interest.
• Topic Focus. Fully describe and sufficiently narrow the focus for research.
• Academic Discipline. Learn more about your area of research & refine the scope.
• Avoid Bias. Be aware of bias that you (as a researcher) may have.
• Document your research. Use Google Docs to track your research process.
• Research apps. Consider using Evernote or Zotero to track your research.

Consider Purpose

What will your topic and research address?

In The Literature Review: A Step-by-Step Guide for Students , Ridley presents that literature reviews serve several purposes (2008, p. 16-17).  Included are the following points:

• Historical background for the research;
• Overview of current field provided by "contemporary debates, issues, and questions;"
• Theories and concepts related to your research;
• Introduce "relevant terminology" - or academic language - being used it the field;
• Connect to existing research - does your work "extend or challenge [this] or address a gap;" 
• Provide "supporting evidence for a practical problem or issue" that your research addresses.

★ Schedule a research appointment

At this point in your literature review, take time to meet with a librarian. Why? Understanding the subject terminology used in databases can be challenging. Archer Librarians can help you structure a search, preparing you for step two. How? Contact a librarian directly or use the online form to schedule an appointment. Details are provided in the adjacent Schedule an Appointment box.

2. Search the Literature

Collect & Select Data: Preview, select, and organize

AU Library is your go-to resource for this step in your literature review process. The literature search will include books and ebooks, scholarly and practitioner journals, theses and dissertations, and indexes. You may also choose to include web sites, blogs, open access resources, and newspapers. This library guide provides access to resources needed to complete a literature review.

Books & eBooks: Archer Library & OhioLINK

Databases: Scholarly & Practitioner Journals

Review the Library Databases tab on this library guide, it provides links to recommended databases for Education & Psychology, Business, and General & Social Sciences.

Expand your journal search; a complete listing of available AU Library and OhioLINK databases is available on the Databases  A to Z list . Search the database by subject, type, name, or do use the search box for a general title search. The A to Z list also includes open access resources and select internet sites.

Databases: Theses & Dissertations

Review the Library Databases tab on this guide, it includes Theses & Dissertation resources. AU library also has AU student authored theses and dissertations available in print, search the library catalog for these titles.

Did you know? If you are looking for particular chapters within a dissertation that is not fully available online, it is possible to submit an ILL article request . Do this instead of requesting the entire dissertation.

Newspapers:  Databases & Internet

Consider current literature in your academic field. AU Library's database collection includes The Chronicle of Higher Education and The Wall Street Journal .  The Internet Resources tab in this guide provides links to newspapers and online journals such as Inside Higher Ed , COABE Journal , and Education Week .

The Chronicle of Higher Education has the nation’s largest newsroom dedicated to covering colleges and universities.  Source of news, information, and jobs for college and university faculty members and administrators

The Chronicle features complete contents of the latest print issue; daily news and advice columns; current job listings; archive of previously published content; discussion forums; and career-building tools such as online CV management and salary databases. Dates covered: 1970-present.

Offers in-depth coverage of national and international business and finance as well as first-rate coverage of hard news--all from America's premier financial newspaper. Covers complete bibliographic information and also subjects, companies, people, products, and geographic areas. 

Comprehensive coverage back to 1984 is available from the world's leading financial newspaper through the ProQuest database. 

Newspaper Source provides cover-to-cover full text for hundreds of national (U.S.), international and regional newspapers. In addition, it offers television and radio news transcripts from major networks.

Provides complete television and radio news transcripts from CBS News, CNN, CNN International, FOX News, and more.

Search Strategies & Boolean Operators

There are three basic boolean operators:  AND, OR, and NOT.

Used with your search terms, boolean operators will either expand or limit results. What purpose do they serve? They help to define the relationship between your search terms. For example, using the operator AND will combine the terms expanding the search. When searching some databases, and Google, the operator AND may be implied.

Overview of boolean terms

About the example: Boolean searches were conducted on November 4, 2019; result numbers may vary at a later date. No additional database limiters were set to further narrow search returns.

Database Search Limiters

Database strategies for targeted search results.

Most databases include limiters, or additional parameters, you may use to strategically focus search results.  EBSCO databases, such as Education Research Complete & Academic Search Complete provide options to:

• Limit results to full text;
• Limit results to scholarly journals, and reference available;
• Select results source type to journals, magazines, conference papers, reviews, and newspapers
• Publication date

Keep in mind that these tools are defined as limiters for a reason; adding them to a search will limit the number of results returned.  This can be a double-edged sword.  How? 

• If limiting results to full-text only, you may miss an important piece of research that could change the direction of your research. Interlibrary loan is available to students, free of charge. Request articles that are not available in full-text; they will be sent to you via email.
• If narrowing publication date, you may eliminate significant historical - or recent - research conducted on your topic.
• Limiting resource type to a specific type of material may cause bias in the research results.

Use limiters with care. When starting a search, consider opting out of limiters until the initial literature screening is complete. The second or third time through your research may be the ideal time to focus on specific time periods or material (scholarly vs newspaper).

★ Truncating Search Terms

Expanding your search term at the root.

Truncating is often referred to as 'wildcard' searching. Databases may have their own specific wildcard elements however, the most commonly used are the asterisk (*) or question mark (?).  When used within your search. they will expand returned results.

Asterisk (*) Wildcard

Using the asterisk wildcard will return varied spellings of the truncated word. In the following example, the search term education was truncated after the letter "t."

Explore these database help pages for additional information on crafting search terms.

• EBSCO Connect: Searching with Wildcards and Truncation Symbols
• EBSCO Connect: Searching with Boolean Operators
• EBSCO Connect: EBSCOhost Search Tips
• EBSCO Connect: Basic Searching with EBSCO
• ProQuest Help: Search Tips
• ERIC: How does ERIC search work?

★ EBSCO Databases & Google Drive

Tips for saving research directly to Google drive.

Researching in an EBSCO database?

It is possible to save articles (PDF and HTML) and abstracts in EBSCOhost databases directly to Google drive. Select the Google Drive icon, authenticate using a Google account, and an EBSCO folder will be created in your account. This is a great option for managing your research. If documenting your research in a Google Doc, consider linking the information to actual articles saved in drive.

EBSCO Databases & Google Drive

EBSCOHost Databases & Google Drive: Managing your Research

This video features an overview of how to use Google Drive with EBSCO databases to help manage your research. It presents information for connecting an active Google account to EBSCO and steps needed to provide permission for EBSCO to manage a folder in Drive.

About the Video:  Closed captioning is available, select CC from the video menu.  If you need to review a specific area on the video, view on YouTube and expand the video description for access to topic time stamps.  A video transcript is provided below.

• EBSCOhost Databases & Google Scholar

Defining Literature Review

What is a literature review.

A definition from the Online Dictionary for Library and Information Sciences .

A literature review is "a comprehensive survey of the works published in a particular field of study or line of research, usually over a specific period of time, in the form of an in-depth, critical bibliographic essay or annotated list in which attention is drawn to the most significant works" (Reitz, 2014). 

A systemic review is "a literature review focused on a specific research question, which uses explicit methods to minimize bias in the identification, appraisal, selection, and synthesis of all the high-quality evidence pertinent to the question" (Reitz, 2014).

Recommended Reading

About this page

EBSCO Connect [Discovery and Search]. (2022). Searching with boolean operators. Retrieved May, 3, 2022 from https://connect.ebsco.com/s/?language=en_US

EBSCO Connect [Discover and Search]. (2022). Searching with wildcards and truncation symbols. Retrieved May 3, 2022; https://connect.ebsco.com/s/?language=en_US

Machi, L.A. & McEvoy, B.T. (2009). The literature review . Thousand Oaks, CA: Corwin Press: 

Reitz, J.M. (2014). Online dictionary for library and information science. ABC-CLIO, Libraries Unlimited . Retrieved from https://www.abc-clio.com/ODLIS/odlis_A.aspx

Ridley, D. (2008). The literature review: A step-by-step guide for students . Thousand Oaks, CA: Sage Publications, Inc.

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Writing a Literature Review

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A literature review is a document or section of a document that collects key sources on a topic and discusses those sources in conversation with each other (also called synthesis ). The lit review is an important genre in many disciplines, not just literature (i.e., the study of works of literature such as novels and plays). When we say “literature review” or refer to “the literature,” we are talking about the research ( scholarship ) in a given field. You will often see the terms “the research,” “the scholarship,” and “the literature” used mostly interchangeably.

Where, when, and why would I write a lit review?

There are a number of different situations where you might write a literature review, each with slightly different expectations; different disciplines, too, have field-specific expectations for what a literature review is and does. For instance, in the humanities, authors might include more overt argumentation and interpretation of source material in their literature reviews, whereas in the sciences, authors are more likely to report study designs and results in their literature reviews; these differences reflect these disciplines’ purposes and conventions in scholarship. You should always look at examples from your own discipline and talk to professors or mentors in your field to be sure you understand your discipline’s conventions, for literature reviews as well as for any other genre.

A literature review can be a part of a research paper or scholarly article, usually falling after the introduction and before the research methods sections. In these cases, the lit review just needs to cover scholarship that is important to the issue you are writing about; sometimes it will also cover key sources that informed your research methodology.

Lit reviews can also be standalone pieces, either as assignments in a class or as publications. In a class, a lit review may be assigned to help students familiarize themselves with a topic and with scholarship in their field, get an idea of the other researchers working on the topic they’re interested in, find gaps in existing research in order to propose new projects, and/or develop a theoretical framework and methodology for later research. As a publication, a lit review usually is meant to help make other scholars’ lives easier by collecting and summarizing, synthesizing, and analyzing existing research on a topic. This can be especially helpful for students or scholars getting into a new research area, or for directing an entire community of scholars toward questions that have not yet been answered.

What are the parts of a lit review?

Most lit reviews use a basic introduction-body-conclusion structure; if your lit review is part of a larger paper, the introduction and conclusion pieces may be just a few sentences while you focus most of your attention on the body. If your lit review is a standalone piece, the introduction and conclusion take up more space and give you a place to discuss your goals, research methods, and conclusions separately from where you discuss the literature itself.

Introduction:

• An introductory paragraph that explains what your working topic and thesis is
• A forecast of key topics or texts that will appear in the review
• Potentially, a description of how you found sources and how you analyzed them for inclusion and discussion in the review (more often found in published, standalone literature reviews than in lit review sections in an article or research paper)
• Summarize and synthesize: Give an overview of the main points of each source and combine them into a coherent whole
• Analyze and interpret: Don’t just paraphrase other researchers – add your own interpretations where possible, discussing the significance of findings in relation to the literature as a whole
• Critically Evaluate: Mention the strengths and weaknesses of your sources
• Write in well-structured paragraphs: Use transition words and topic sentence to draw connections, comparisons, and contrasts.

Conclusion:

• Summarize the key findings you have taken from the literature and emphasize their significance
• Connect it back to your primary research question

How should I organize my lit review?

Lit reviews can take many different organizational patterns depending on what you are trying to accomplish with the review. Here are some examples:

• Chronological : The simplest approach is to trace the development of the topic over time, which helps familiarize the audience with the topic (for instance if you are introducing something that is not commonly known in your field). If you choose this strategy, be careful to avoid simply listing and summarizing sources in order. Try to analyze the patterns, turning points, and key debates that have shaped the direction of the field. Give your interpretation of how and why certain developments occurred (as mentioned previously, this may not be appropriate in your discipline — check with a teacher or mentor if you’re unsure).
• Thematic : If you have found some recurring central themes that you will continue working with throughout your piece, you can organize your literature review into subsections that address different aspects of the topic. For example, if you are reviewing literature about women and religion, key themes can include the role of women in churches and the religious attitude towards women.
• Qualitative versus quantitative research
• Empirical versus theoretical scholarship
• Divide the research by sociological, historical, or cultural sources
• Theoretical : In many humanities articles, the literature review is the foundation for the theoretical framework. You can use it to discuss various theories, models, and definitions of key concepts. You can argue for the relevance of a specific theoretical approach or combine various theorical concepts to create a framework for your research.

What are some strategies or tips I can use while writing my lit review?

Any lit review is only as good as the research it discusses; make sure your sources are well-chosen and your research is thorough. Don’t be afraid to do more research if you discover a new thread as you’re writing. More info on the research process is available in our "Conducting Research" resources .

As you’re doing your research, create an annotated bibliography ( see our page on the this type of document ). Much of the information used in an annotated bibliography can be used also in a literature review, so you’ll be not only partially drafting your lit review as you research, but also developing your sense of the larger conversation going on among scholars, professionals, and any other stakeholders in your topic.

Usually you will need to synthesize research rather than just summarizing it. This means drawing connections between sources to create a picture of the scholarly conversation on a topic over time. Many student writers struggle to synthesize because they feel they don’t have anything to add to the scholars they are citing; here are some strategies to help you:

• It often helps to remember that the point of these kinds of syntheses is to show your readers how you understand your research, to help them read the rest of your paper.
• Writing teachers often say synthesis is like hosting a dinner party: imagine all your sources are together in a room, discussing your topic. What are they saying to each other?
• Look at the in-text citations in each paragraph. Are you citing just one source for each paragraph? This usually indicates summary only. When you have multiple sources cited in a paragraph, you are more likely to be synthesizing them (not always, but often
• Read more about synthesis here.

The most interesting literature reviews are often written as arguments (again, as mentioned at the beginning of the page, this is discipline-specific and doesn’t work for all situations). Often, the literature review is where you can establish your research as filling a particular gap or as relevant in a particular way. You have some chance to do this in your introduction in an article, but the literature review section gives a more extended opportunity to establish the conversation in the way you would like your readers to see it. You can choose the intellectual lineage you would like to be part of and whose definitions matter most to your thinking (mostly humanities-specific, but this goes for sciences as well). In addressing these points, you argue for your place in the conversation, which tends to make the lit review more compelling than a simple reporting of other sources.

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• Knowledge Base

Methodology

• How to Write a Literature Review | Guide, Examples, & Templates

How to Write a Literature Review | Guide, Examples, & Templates

Published on January 2, 2023 by Shona McCombes . Revised on September 11, 2023.

What is a literature review? A literature review is a survey of scholarly sources on a specific topic. It provides an overview of current knowledge, allowing you to identify relevant theories, methods, and gaps in the existing research that you can later apply to your paper, thesis, or dissertation topic .

There are five key steps to writing a literature review:

• Search for relevant literature
• Evaluate sources
• Identify themes, debates, and gaps
• Outline the structure
• Write your literature review

A good literature review doesn’t just summarize sources—it analyzes, synthesizes , and critically evaluates to give a clear picture of the state of knowledge on the subject.

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Table of contents

What is the purpose of a literature review, examples of literature reviews, step 1 – search for relevant literature, step 2 – evaluate and select sources, step 3 – identify themes, debates, and gaps, step 4 – outline your literature review’s structure, step 5 – write your literature review, free lecture slides, other interesting articles, frequently asked questions, introduction.

• Quick Run-through
• Step 1 & 2

When you write a thesis , dissertation , or research paper , you will likely have to conduct a literature review to situate your research within existing knowledge. The literature review gives you a chance to:

• Demonstrate your familiarity with the topic and its scholarly context
• Develop a theoretical framework and methodology for your research
• Position your work in relation to other researchers and theorists
• Show how your research addresses a gap or contributes to a debate
• Evaluate the current state of research and demonstrate your knowledge of the scholarly debates around your topic.

Writing literature reviews is a particularly important skill if you want to apply for graduate school or pursue a career in research. We’ve written a step-by-step guide that you can follow below.

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Writing literature reviews can be quite challenging! A good starting point could be to look at some examples, depending on what kind of literature review you’d like to write.

• Example literature review #1: “Why Do People Migrate? A Review of the Theoretical Literature” ( Theoretical literature review about the development of economic migration theory from the 1950s to today.)
• Example literature review #2: “Literature review as a research methodology: An overview and guidelines” ( Methodological literature review about interdisciplinary knowledge acquisition and production.)
• Example literature review #3: “The Use of Technology in English Language Learning: A Literature Review” ( Thematic literature review about the effects of technology on language acquisition.)
• Example literature review #4: “Learners’ Listening Comprehension Difficulties in English Language Learning: A Literature Review” ( Chronological literature review about how the concept of listening skills has changed over time.)

You can also check out our templates with literature review examples and sample outlines at the links below.

Download Word doc Download Google doc

Before you begin searching for literature, you need a clearly defined topic .

If you are writing the literature review section of a dissertation or research paper, you will search for literature related to your research problem and questions .

Make a list of keywords

Start by creating a list of keywords related to your research question. Include each of the key concepts or variables you’re interested in, and list any synonyms and related terms. You can add to this list as you discover new keywords in the process of your literature search.

• Social media, Facebook, Instagram, Twitter, Snapchat, TikTok
• Body image, self-perception, self-esteem, mental health
• Generation Z, teenagers, adolescents, youth

Search for relevant sources

Use your keywords to begin searching for sources. Some useful databases to search for journals and articles include:

• Your university’s library catalogue
• Google Scholar
• Project Muse (humanities and social sciences)
• Medline (life sciences and biomedicine)
• EconLit (economics)
• Inspec (physics, engineering and computer science)

You can also use boolean operators to help narrow down your search.

Make sure to read the abstract to find out whether an article is relevant to your question. When you find a useful book or article, you can check the bibliography to find other relevant sources.

You likely won’t be able to read absolutely everything that has been written on your topic, so it will be necessary to evaluate which sources are most relevant to your research question.

For each publication, ask yourself:

• What question or problem is the author addressing?
• What are the key concepts and how are they defined?
• What are the key theories, models, and methods?
• Does the research use established frameworks or take an innovative approach?
• What are the results and conclusions of the study?
• How does the publication relate to other literature in the field? Does it confirm, add to, or challenge established knowledge?
• What are the strengths and weaknesses of the research?

Make sure the sources you use are credible , and make sure you read any landmark studies and major theories in your field of research.

You can use our template to summarize and evaluate sources you’re thinking about using. Click on either button below to download.

Take notes and cite your sources

As you read, you should also begin the writing process. Take notes that you can later incorporate into the text of your literature review.

It is important to keep track of your sources with citations to avoid plagiarism . It can be helpful to make an annotated bibliography , where you compile full citation information and write a paragraph of summary and analysis for each source. This helps you remember what you read and saves time later in the process.

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To begin organizing your literature review’s argument and structure, be sure you understand the connections and relationships between the sources you’ve read. Based on your reading and notes, you can look for:

• Trends and patterns (in theory, method or results): do certain approaches become more or less popular over time?
• Themes: what questions or concepts recur across the literature?
• Debates, conflicts and contradictions: where do sources disagree?
• Pivotal publications: are there any influential theories or studies that changed the direction of the field?
• Gaps: what is missing from the literature? Are there weaknesses that need to be addressed?

This step will help you work out the structure of your literature review and (if applicable) show how your own research will contribute to existing knowledge.

• Most research has focused on young women.
• There is an increasing interest in the visual aspects of social media.
• But there is still a lack of robust research on highly visual platforms like Instagram and Snapchat—this is a gap that you could address in your own research.

There are various approaches to organizing the body of a literature review. Depending on the length of your literature review, you can combine several of these strategies (for example, your overall structure might be thematic, but each theme is discussed chronologically).

Chronological

The simplest approach is to trace the development of the topic over time. However, if you choose this strategy, be careful to avoid simply listing and summarizing sources in order.

Try to analyze patterns, turning points and key debates that have shaped the direction of the field. Give your interpretation of how and why certain developments occurred.

If you have found some recurring central themes, you can organize your literature review into subsections that address different aspects of the topic.

For example, if you are reviewing literature about inequalities in migrant health outcomes, key themes might include healthcare policy, language barriers, cultural attitudes, legal status, and economic access.

Methodological

If you draw your sources from different disciplines or fields that use a variety of research methods , you might want to compare the results and conclusions that emerge from different approaches. For example:

• Look at what results have emerged in qualitative versus quantitative research
• Discuss how the topic has been approached by empirical versus theoretical scholarship
• Divide the literature into sociological, historical, and cultural sources

Theoretical

A literature review is often the foundation for a theoretical framework . You can use it to discuss various theories, models, and definitions of key concepts.

You might argue for the relevance of a specific theoretical approach, or combine various theoretical concepts to create a framework for your research.

Like any other academic text , your literature review should have an introduction , a main body, and a conclusion . What you include in each depends on the objective of your literature review.

The introduction should clearly establish the focus and purpose of the literature review.

Depending on the length of your literature review, you might want to divide the body into subsections. You can use a subheading for each theme, time period, or methodological approach.

As you write, you can follow these tips:

• Summarize and synthesize: give an overview of the main points of each source and combine them into a coherent whole
• Analyze and interpret: don’t just paraphrase other researchers — add your own interpretations where possible, discussing the significance of findings in relation to the literature as a whole
• Critically evaluate: mention the strengths and weaknesses of your sources
• Write in well-structured paragraphs: use transition words and topic sentences to draw connections, comparisons and contrasts

In the conclusion, you should summarize the key findings you have taken from the literature and emphasize their significance.

When you’ve finished writing and revising your literature review, don’t forget to proofread thoroughly before submitting. Not a language expert? Check out Scribbr’s professional proofreading services !

This article has been adapted into lecture slides that you can use to teach your students about writing a literature review.

Scribbr slides are free to use, customize, and distribute for educational purposes.

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

• Sampling methods
• Simple random sampling
• Stratified sampling
• Cluster sampling
• Likert scales
• Reproducibility

 Statistics

• Null hypothesis
• Statistical power
• Probability distribution
• Effect size
• Poisson distribution

Research bias

• Optimism bias
• Cognitive bias
• Implicit bias
• Hawthorne effect
• Anchoring bias
• Explicit bias

A literature review is a survey of scholarly sources (such as books, journal articles, and theses) related to a specific topic or research question .

It is often written as part of a thesis, dissertation , or research paper , in order to situate your work in relation to existing knowledge.

There are several reasons to conduct a literature review at the beginning of a research project:

• To familiarize yourself with the current state of knowledge on your topic
• To ensure that you’re not just repeating what others have already done
• To identify gaps in knowledge and unresolved problems that your research can address
• To develop your theoretical framework and methodology
• To provide an overview of the key findings and debates on the topic

Writing the literature review shows your reader how your work relates to existing research and what new insights it will contribute.

The literature review usually comes near the beginning of your thesis or dissertation . After the introduction , it grounds your research in a scholarly field and leads directly to your theoretical framework or methodology .

A literature review is a survey of credible sources on a topic, often used in dissertations , theses, and research papers . Literature reviews give an overview of knowledge on a subject, helping you identify relevant theories and methods, as well as gaps in existing research. Literature reviews are set up similarly to other  academic texts , with an introduction , a main body, and a conclusion .

An  annotated bibliography is a list of  source references that has a short description (called an annotation ) for each of the sources. It is often assigned as part of the research process for a  paper .  

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Chapter 9. Reviewing the Literature

What is a “literature review”.

No researcher ever comes up with a research question that is wholly novel. Someone, somewhere, has asked the same thing. Academic research is part of a larger community of researchers, and it is your responsibility, as a member of this community, to acknowledge others who have asked similar questions and to put your particular research into this greater context. It is not simply a convention or custom to begin your study with a review of previous literature (the “ lit review ”) but an important responsibility you owe the scholarly community.

Too often, new researchers pursue a topic to study and then write something like, “No one has ever studied this before” or “This area is underresearched.” It may be that no one has studied this particular group or setting, but it is highly unlikely no one has studied the foundational phenomenon of interest. And that comment about an area being underresearched? Be careful. The statement may simply signal to others that you haven’t done your homework. Rubin ( 2021 ) refers to this as “free soloing,” and it is not appreciated in academic work:

The truth of the matter is, academics don’t really like when people free solo. It’s really bad form to omit talking about the other people who are doing or have done research in your area. Partly, I mean we need to cite their work, but I also mean we need to respond to it—agree or disagree, clarify for extend. It’s also really bad form to talk about your research in a way that does not make it understandable to other academics.…You have to explain to your readers what your story is really about in terms they care about . This means using certain terminology, referencing debates in the literature, and citing relevant works—that is, in connecting your work to something else. ( 51–52 )

A literature review is a comprehensive summary of previous research on a topic. It includes both articles and books—and in some cases reports—relevant to a particular area of research. Ideally, one’s research question follows from the reading of what has already been produced. For example, you are interested in studying sports injuries related to female gymnasts. You read everything you can find on sports injuries related to female gymnasts, and you begin to get a sense of what questions remain open. You find that there is a lot of research on how coaches manage sports injuries and much about cultures of silence around treating injuries, but you don’t know what the gymnasts themselves are thinking about these issues. You look specifically for studies about this and find several, which then pushes you to narrow the question further. Your literature review then provides the road map of how you came to your very specific question, and it puts your study in the context of studies of sports injuries. What you eventually find can “speak to” all the related questions as well as your particular one.

In practice, the process is often a bit messier. Many researchers, and not simply those starting out, begin with a particular question and have a clear idea of who they want to study and where they want to conduct their study but don’t really know much about other studies at all. Although backward, we need to recognize this is pretty common. Telling students to “find literature” after the fact can seem like a purposeless task or just another hurdle for completing a thesis or dissertation. It is not! Even if you were not motivated by the literature in the first place, acknowledging similar studies and connecting your own research to those studies are important parts of building knowledge. Acknowledgment of past research is a responsibility you owe the discipline to which you belong.

Literature reviews can also signal theoretical approaches and particular concepts that you will incorporate into your own study. For example, let us say you are doing a study of how people find their first jobs after college, and you want to use the concept of social capital . There are competing definitions of social capital out there (e.g., Bourdieu vs. Burt vs. Putnam). Bourdieu’s notion is of one form of capital, or durable asset, of a “network of more or less institutionalized relationships of mutual acquaintance or recognition” ( 1984:248 ). Burt emphasizes the “brokerage opportunities” in a social network as social capital ( 1997:355 ). Putnam’s social capital is all about “facilitating coordination and cooperation for mutual benefit” ( 2001:67 ). Your literature review can adjudicate among these three approaches, or it can simply refer to the one that is animating your own research. If you include Bourdieu in your literature review, readers will know “what kind” of social capital you are talking about as well as what kind of social scientist you yourself are. They will likely understand that you are interested more in how some people are advantaged by their social capital relative to others rather than being interested in the mechanics of how social networks operate.

The literature review thus does two important things for you: firstly, it allows you to acknowledge previous research in your area of interest, thereby situating you within a discipline or body of scholars, and, secondly, it demonstrates that you know what you are talking about. If you present the findings of your research study without including a literature review, it can be like singing into the wind. It sounds nice, but no one really hears it, or if they do catch snippets, they don’t know where it is coming from.

Examples of Literature Reviews

To help you get a grasp of what a good literature review looks like and how it can advance your study, let’s take a look at a few examples.

Reader-Friendly Example: The Power of Peers

The first is by Janice McCabe ( 2016 ) and is from an article on peer networks in the journal Contexts . Contexts presents articles in a relatively reader-friendly format, with the goal of reaching a large audience for interesting sociological research. Read this example carefully and note how easily McCabe is able to convey the relevance of her own work by situating it in the context of previous studies:

Scholars who study education have long acknowledged the importance of peers for students’ well-being and academic achievement. For example, in 1961, James Coleman argued that peer culture within high schools shapes students’ social and academic aspirations and successes. More recently, Judith Rich Harris has drawn on research in a range of areas—from sociological studies of preschool children to primatologists’ studies of chimpanzees and criminologists’ studies of neighborhoods—to argue that peers matter much more than parents in how children “turn out.” Researchers have explored students’ social lives in rich detail, as in Murray Milner’s book about high school students, Freaks, Geeks, and Cool Kids , and Elizabeth Armstrong and Laura Hamilton’s look at college students, Paying for the Party . These works consistently show that peers play a very important role in most students’ lives. They tend, however, to prioritize social over academic influence and to use a fuzzy conception of peers rather than focusing directly on friends—the relationships that should matter most for student success. Social scientists have also studied the power of peers through network analysis, which is based on uncovering the web of connections between people. Network analysis involves visually mapping networks and mathematically comparing their structures (such as the density of ties) and the positions of individuals within them (such as how central a given person is within the network). As Nicholas Christakis and James Fowler point out in their book Connected , network structure influences a range of outcomes, including health, happiness, wealth, weight, and emotions. Given that sociologists have long considered network explanations for social phenomena, it’s surprising that we know little about how college students’ friends impact their experiences. In line with this network tradition, I focus on the structure of friendship networks, constructing network maps so that the differences we see across participants are due to the underlying structure, including each participant’s centrality in their friendship group and the density of ties among their friends. ( 23 )

What did you notice? In her very second sentence, McCabe uses “for example” to introduce a study by Coleman, thereby indicating that she is not going to tell you every single study in this area but is going to tell you that (1) there is a lot of research in this area, (2) it has been going on since at least 1961, and (3) it is still relevant (i.e., recent studies are still being done now). She ends her first paragraph by summarizing the body of literature in this area (after giving you a few examples) and then telling you what may have been (so far) left out of this research. In the second paragraph, she shifts to a separate interesting focus that is related to the first but is also quite distinct. Lit reviews very often include two (or three) distinct strands of literature, the combination of which nicely backgrounds this particular study . In the case of our female gymnast study (above), those two strands might be (1) cultures of silence around sports injuries and (2) the importance of coaches. McCabe concludes her short and sweet literature review with one sentence explaining how she is drawing from both strands of the literature she has succinctly presented for her particular study. This example should show you that literature reviews can be readable, helpful, and powerful additions to your final presentation.

Authoritative Academic Journal Example: Working Class Students’ College Expectations

The second example is more typical of academic journal writing. It is an article published in the British Journal of Sociology of Education by Wolfgang Lehmann ( 2009 ):

Although this increase in post-secondary enrolment and the push for university is evident across gender, race, ethnicity, and social class categories, access to university in Canada continues to be significantly constrained for those from lower socio-economic backgrounds (Finnie, Lascelles, and Sweetman 2005). Rising tuition fees coupled with an overestimation of the cost and an underestimation of the benefits of higher education has put university out of reach for many young people from low-income families (Usher 2005). Financial constraints aside, empirical studies in Canada have shown that the most important predictor of university access is parental educational attainment. Having at least one parent with a university degree significantly increases the likelihood of a young person to attend academic-track courses in high school, have high educational and career aspirations, and ultimately attend university (Andres et al. 1999, 2000; Lehmann 2007a). Drawing on Bourdieu’s various writing on habitus and class-based dispositions (see, for example, Bourdieu 1977, 1990), Hodkinson and Sparkes (1997) explain career decisions as neither determined nor completely rational. Instead, they are based on personal experiences (e.g., through employment or other exposure to occupations) and advice from others. Furthermore, they argue that we have to understand these decisions as pragmatic, rather than rational. They are pragmatic in that they are based on incomplete and filtered information, because of the social context in which the information is obtained and processed. New experiences and information can, however, also be allowed into one’s world, where they gradually or radically transform habitus, which in turn creates the possibility for the formation of new and different dispositions. Encountering a supportive teacher in elementary or secondary school, having ambitious friends, or chance encounters can spark such transformations. Transformations can be confirming or contradictory, they can be evolutionary or dislocating. Working-class students who enter university most certainly encounter such potentially transformative situations. Granfield (1991) has shown how initially dislocating feelings of inadequacy and inferiority of working-class students at an elite US law school were eventually replaced by an evolutionary transformation, in which the students came to dress, speak and act more like their middle-class and upper-class peers. In contrast, Lehmann (2007b) showed how persistent habitus dislocation led working-class university students to drop out of university. Foskett and Hemsley-Brown (1999) argue that young people’s perceptions of careers are a complex mix of their own experiences, images conveyed through adults, and derived images conveyed by the media. Media images of careers, perhaps, are even more important for working-class youth with high ambitions as they offer (generally distorted) windows into a world of professional employment to which they have few other sources of access. It has also been argued that working-class youth who do continue to university still face unique, class-specific challenges, evident in higher levels of uncertainty (Baxter and Britton 2001; Lehmann 2004, 2007a; Quinn 2004), their higher education choices (Ball et al. 2002; Brooks 2003; Reay et al. 2001) and fears of inadequacy because of their cultural outsider status (Aries and Seider 2005; Granfield 1991). Although the number of working-class university students in Canada has slowly increased, that of middle-class students at university has risen far more steeply (Knighton and Mizra 2002). These different enrolment trajectories have actually widened the participation gap, which in tum explains our continued concerns with the potential outsider status Indeed, in a study comparing first-generation working-class and traditional students who left university without graduating, Lehmann (2007b) found that first-generation working-class students were more likely to leave university very early in some cases within the first two months of enrollment. They were also more likely to leave university despite solid academic performance. Not “fitting in,” not “feeling university,” and not being able to “relate to these people” were key reasons for eventually withdrawing from university. From the preceding review of the literature, a number of key research questions arise: How do working-class university students frame their decision to attend university? How do they defy the considerable odds documented in the literature to attend university? What are the sources of information and various images that create dispositions to study at university? What role does their social-class background- or habitus play in their transition dispositions and how does this translate into expectations for university? ( 139 )

What did you notice here? How is this different from (and similar to) the first example? Note that rather than provide you with one or two illustrative examples of similar types of research, Lehmann provides abundant source citations throughout. He includes theory and concepts too. Like McCabe, Lehmann is weaving through multiple literature strands: the class gap in higher education participation in Canada, class-based dispositions, and obstacles facing working-class college students. Note how he concludes the literature review by placing his research questions in context.

Find other articles of interest and read their literature reviews carefully. I’ve included two more for you at the end of this chapter . As you learned how to diagram a sentence in elementary school (hopefully!), try diagramming the literature reviews. What are the “different strands” of research being discussed? How does the author connect these strands to their own research questions? Where is theory in the lit review, and how is it incorporated (e.g., Is it a separate strand of its own or is it inextricably linked with previous research in this area)?

One model of how to structure your literature review can be found in table 9.1. More tips, hints, and practices will be discussed later in the chapter.

Table 9.1. Model of Literature Review, Adopted from Calarco (2020:166)

Embracing Theory

A good research study will, in some form or another, use theory. Depending on your particular study (and possibly the preferences of the members of your committee), theory may be built into your literature review. Or it may form its own section in your research proposal/design (e.g., “literature review” followed by “theoretical framework”). In my own experience, I see a lot of graduate students grappling with the requirement to “include theory” in their research proposals. Things get a little squiggly here because there are different ways of incorporating theory into a study (Are you testing a theory? Are you generating a theory?), and based on these differences, your literature review proper may include works that describe, explain, and otherwise set forth theories, concepts, or frameworks you are interested in, or it may not do this at all. Sometimes a literature review sets forth what we know about a particular group or culture totally independent of what kinds of theoretical framework or particular concepts you want to explore. Indeed, the big point of your study might be to bring together a body of work with a theory that has never been applied to it previously. All this is to say that there is no one correct way to approach the use of theory and the writing about theory in your research proposal.

Students are often scared of embracing theory because they do not exactly understand what it is. Sometimes, it seems like an arbitrary requirement. You’re interested in a topic; maybe you’ve even done some research in the area and you have findings you want to report. And then a committee member reads over what you have and asks, “So what?” This question is a good clue that you are missing theory, the part that connects what you have done to what other researchers have done and are doing. You might stumble upon this rather accidentally and not know you are embracing theory, as in a case where you seek to replicate a prior study under new circumstances and end up finding that a particular correlation between behaviors only happens when mediated by something else. There’s theory in there, if you can pull it out and articulate it. Or it might be that you are motivated to do more research on racial microaggressions because you want to document their frequency in a particular setting, taking for granted the kind of critical race theoretical framework that has done the hard work of defining and conceptualizing “microaggressions” in the first place. In that case, your literature review could be a review of Critical Race Theory, specifically related to this one important concept. That’s the way to bring your study into a broader conversation while also acknowledging (and honoring) the hard work that has preceded you.

Rubin ( 2021 ) classifies ways of incorporating theory into case study research into four categories, each of which might be discussed somewhat differently in a literature review or theoretical framework section. The first, the least theoretical, is where you set out to study a “configurative idiographic case” ( 70 ) This is where you set out to describe a particular case, leaving yourself pretty much open to whatever you find. You are not expecting anything based on previous literature. This is actually pretty weak as far as research design goes, but it is probably the default for novice researchers. Your committee members should probably help you situate this in previous literature in some way or another. If they cannot, and it really does appear you are looking at something fairly new that no one else has bothered to research before, and you really are completely open to discovery, you might try using a Grounded Theory approach, which is a methodological approach that foregrounds the generation of theory. In that case, your “theory” section can be a discussion of “Grounded Theory” methodology (confusing, yes, but if you take some time to ponder, you will see how this works). You will still need a literature review, though. Ideally one that describes other studies that have ever looked at anything remotely like what you are looking at—parallel cases that have been researched.

The second approach is the “disciplined configurative case,” in which theory is applied to explain a particular case or topic. You are not trying to test the theory but rather assuming the theory is correct, as in the case of exploring microaggressions in a particular setting. In this case, you really do need to have a separate theory section in addition to the literature review, one in which you clearly define the theoretical framework, including any of its important concepts. You can use this section to discuss how other researchers have used the concepts and note any discrepancies in definitions or operationalization of those concepts. This way you will be sure to design your study so that it speaks to and with other researchers. If everyone who is writing about microaggressions has a different definition of them, it is hard for others to compare findings or make any judgments about their prevalence (or any number of other important characteristics). Your literature review section may then stand alone and describe previous research in the particular area or setting, irrespective of the kinds of theory underlying those studies.

The third approach is “heuristic,” one in which you seek to identify new variables, hypotheses, mechanisms, or paths not yet explained by a theory or theoretical framework. In a way, you are generating new theory, but it is probably more accurate to say that you are extending or deepening preexisting theory. In this case, having a single literature review that is focused on the theory and the ways the theory has been applied and understood (with all its various mechanisms and pathways) is probably your best option. The focus of the literature reviewed is less on the case and more on the theory you are seeking to extend.

The final approach is “theory testing,” which is much rarer in qualitative studies than in quantitative, where this is the default approach. Theory-testing cases are those where a particular case is used to see if an existing theory is accurate or accurate under particular circumstances. As with the heuristic approach, your literature review will probably draw heavily on previous uses of the theory, but you may end up having a special section specifically about cases very close to your own . In other words, the more your study approaches theory testing, the more likely there is to be a set of similar studies to draw on or even one important key study that you are setting your own study up in parallel to in order to find out if the theory generated there operates here.

If we wanted to get very technical, it might be useful to distinguish theoretical frameworks properly from conceptual frameworks. The latter are a bit looser and, given the nature of qualitative research, often fit exploratory studies. Theoretical frameworks rely on specific theories and are essential for theory-testing studies. Conceptual frameworks can pull in specific concepts or ideas that may or may not be linked to particular theories. Think about it this way: A theory is a story of how the world works. Concepts don’t presume to explain the whole world but instead are ways to approach phenomena to help make sense of them. Microaggressions are concepts that are linked to Critical Race Theory. One could contextualize one’s study within Critical Race Theory and then draw various concepts, such as that of microaggressions from the overall theoretical framework. Or one could bracket out the master theory or framework and employ the concept of microaggression more opportunistically as a phenomenon of interest. If you are unsure of what theory you are using, you might want to frame a more practical conceptual framework in your review of the literature.

Helpful Tips

How to maintain good notes for what your read.

Over the years, I have developed various ways of organizing notes on what I read. At first, I used a single sheet of full-size paper with a preprinted list of questions and points clearly addressed on the front side, leaving the second side for more reflective comments and free-form musings about what I read, why it mattered, and how it might be useful for my research. Later, I developed a system in which I use a single 4″ × 6″ note card for each book I read. I try only to use the front side (and write very small), leaving the back for comments that are about not just this reading but things to do or examine or consider based on the reading. These notes often mean nothing to anyone else picking up the card, but they make sense to me. I encourage you to find an organizing system that works for you. Then when you set out to compose a literature review, instead of staring at five to ten books or a dozen articles, you will have ten neatly printed pages or notecards or files that have distilled what is important to know about your reading.

It is also a good idea to store this data digitally, perhaps through a reference manager. I use RefWorks, but I also recommend EndNote or any other system that allows you to search institutional databases. Your campus library will probably provide access to one of these or another system. Most systems will allow you to export references from another manager if and when you decide to move to another system. Reference managers allow you to sort through all your literature by descriptor, author, year, and so on. Even so, I personally like to have the ability to manually sort through my index cards, recategorizing things I have read as I go. I use RefWorks to keep a record of what I have read, with proper citations, so I can create bibliographies more easily, and I do add in a few “notes” there, but the bulk of my notes are kept in longhand.

What kinds of information should you include from your reading? Here are some bulleted suggestions from Calarco ( 2020:113–114 ), with my own emendations:

• Citation . If you are using a reference manager, you can import the citation and then, when you are ready to create a bibliography, you can use a provided menu of citation styles, which saves a lot of time. If you’ve originally formatted in Chicago Style but the journal you are writing for wants APA style, you can change your entire bibliography in less than a minute. When using a notecard for a book, I include author, title, date as well as the library call number (since most of what I read I pull from the library). This is something RefWorks is not able to do, and it helps when I categorize.

I begin each notecard with an “intro” section, where I record the aims, goals, and general point of the book/article as explained in the introductory sections (which might be the preface, the acknowledgments, or the first two chapters). I then draw a bold line underneath this part of the notecard. Everything after that should be chapter specific. Included in this intro section are things such as the following, recommended by Calarco ( 2020 ):

• Key background . “Two to three short bullet points identifying the theory/prior research on which the authors are building and defining key terms.”
• Data/methods . “One or two short bullet points with information about the source of the data and the method of analysis, with a note if this is a novel or particularly effective example of that method.” I use [M] to signal methodology on my notecard, which might read, “[M] Int[erview]s (n-35), B[lack]/W[hite] voters” (I need shorthand to fit on my notecard!).
• Research question . “Stated as briefly as possible.” I always provide page numbers so I can go back and see exactly how this was stated (sometimes, in qualitative research, there are multiple research questions, and they cannot be stated simply).
• Argument/contributions . “Two to three short bullet points briefly describing the authors’ answer to the central research question and its implication for research, theory, and practice.” I use [ARG] for argument to signify the argument, and I make sure this is prominently visible on my notecard. I also provide page numbers here.

For me, all of this fits in the “intro” section, which, if this is a theoretically rich, methodologically sound book, might take up a third or even half of the front page of my notecard. Beneath the bold underline, I report specific findings or particulars of the book as they emerge chapter by chapter. Calarco’s ( 2020 ) next step is the following:

• Key findings . “Three to four short bullet points identifying key patterns in the data that support the authors’ argument.”

All that remains is writing down thoughts that occur upon finishing the article/book. I use the back of the notecard for these kinds of notes. Often, they reach out to other things I have read (e.g., “Robinson reminds me of Crusoe here in that both are looking at the effects of social isolation, but I think Robinson makes a stronger argument”). Calarco ( 2020 ) concludes similarly with the following:

• Unanswered questions . “Two to three short bullet points that identify key limitations of the research and/or questions the research did not answer that could be answered in future research.”

As I mentioned, when I first began taking notes like this, I preprinted pages with prompts for “research question,” “argument,” and so on. This was a great way to remind myself to look for these things in particular. You can do the same, adding whatever preprinted sections make sense to you, given what you are studying and the important aspects of your discipline. The other nice thing about the preprinted forms is that it keeps your writing to a minimum—you cannot write more than the allotted space, even if you might want to, preventing your notes from spiraling out of control. This can be helpful when we are new to a subject and everything seems worth recording!

After years of discipline, I have finally settled on my notecard approach. I have thousands of notecards, organized in several index card filing boxes stacked in my office. On the top right of each card is a note of the month/day I finished reading the item. I can remind myself what I read in the summer of 2010 if the need or desire ever arose to do so…those invaluable notecards are like a memento of what my brain has been up to!

Where to Start Looking for Literature

Your university library should provide access to one of several searchable databases for academic books and articles. My own preference is JSTOR, a service of ITHAKA, a not-for-profit organization that works to advance and preserve knowledge and to improve teaching and learning through the use of digital technologies. JSTOR allows you to search by several keywords and to narrow your search by type of material (articles or books). For many disciplines, the “literature” of the literature review is expected to be peer-reviewed “articles,” but some disciplines will also value books and book chapters. JSTOR is particularly useful for article searching. You can submit several keywords and see what is returned, and you can also narrow your search by a particular journal or discipline. If your discipline has one or two key journals (e.g., the American Journal of Sociology and the American Sociological Review are key for sociology), you might want to go directly to those journals’ websites and search for your topic area. There is an art to when to cast your net widely and when to refine your search, and you may have to tack back and forth to ensure that you are getting all that is relevant but not getting bogged down in all studies that might have some marginal relevance.

Some articles will carry more weight than others, and you can use applications like Google Scholar to see which articles have made and are continuing to make larger impacts on your discipline. Find these articles and read them carefully; use their literature review and the sources cited in those articles to make sure you are capturing what is relevant. This is actually a really good way of finding relevant books—only the most impactful will make it into the citations of journals. Over time, you will notice that a handful of articles (or books) are cited so often that when you see, say, Armstrong and Hamilton ( 2015 ), you know exactly what book this is without looking at the full cite. This is when you know you are in the conversation.

You might also approach a professor whose work is broadly in the area of your interest and ask them to recommend one or two “important” foundational articles or books. You can then use the references cited in those recommendations to build up your literature. Just be careful: some older professors’ knowledge of the literature (and I reluctantly add myself here) may be a bit outdated! It is best that the article or book whose references and sources you use to build your body of literature be relatively current.

Keep a List of Your Keywords

When using searchable databases, it is a good idea to keep a list of all the keywords you use as you go along so that (1) you do not needlessly duplicate your efforts and (2) you can more easily adjust your search as you get a better sense of what you are looking for. I suggest you keep a separate file or even a small notebook for this and you date your search efforts.

Here’s an example:

Table 9.2. Keep a List of Your Keywords

Think Laterally

How to find the various strands of literature to combine? Don’t get stuck on finding the exact same research topic you think you are interested in. In the female gymnast example, I recommended that my student consider looking for studies of ballerinas, who also suffer sports injuries and around whom there is a similar culture of silence. It turned out that there was in fact research about my student’s particular questions, just not about the subjects she was interested in. You might do something similar. Don’t get stuck looking for too direct literature but think about the broader phenomenon of interest or analogous cases.

Read Outside the Canon

Some scholars’ work gets cited by everyone all the time. To some extent, this is a very good thing, as it helps establish the discipline. For example, there are a lot of “Bourdieu scholars” out there (myself included) who draw ideas, concepts, and quoted passages from Bourdieu. This makes us recognizable to one another and is a way of sharing a common language (e.g., where “cultural capital” has a particular meaning to those versed in Bourdieusian theory). There are empirical studies that get cited over and over again because they are excellent studies but also because there is an “echo chamber effect” going on, where knowing to cite this study marks you as part of the club, in the know, and so on. But here’s the problem with this: there are hundreds if not thousands of excellent studies out there that fail to get appreciated because they are crowded out by the canon. Sometimes this happens because they are published in “lower-ranked” journals and are never read by a lot of scholars who don’t have time to read anything other than the “big three” in their field. Other times this happens because the author falls outside of the dominant social networks in the field and thus is unmentored and fails to get noticed by those who publish a lot in those highly ranked and visible spaces. Scholars who fall outside the dominant social networks and who publish outside of the top-ranked journals are in no way less insightful than their peers, and their studies may be just as rigorous and relevant to your work, so it is important for you to take some time to read outside the canon. Due to how a person’s race, gender, and class operate in the academy, there is also a matter of social justice and ethical responsibility involved here: “When you focus on the most-cited research, you’re more likely to miss relevant research by women and especially women of color, whose research tends to be under-cited in most fields. You’re also more likely to miss new research, research by junior scholars, and research in other disciplines that could inform your work. Essentially, it is important to read and cite responsibly, which means checking that you’re not just reading and citing the same white men and the same old studies that everyone has cited before you” ( Calarco 2020:112 ).

Consider Multiple Uses for Literature

Throughout this chapter, I’ve referred to the literature of interest in a rather abstract way, as what is relevant to your study. But there are many different ways previous research can be relevant to your study. The most basic use of the literature is the “findings”—for example, “So-and-so found that Canadian working-class students were concerned about ‘fitting in’ to the culture of college, and I am going to look at a similar question here in the US.” But the literature may be of interest not for its findings but theoretically—for example, employing concepts that you want to employ in your own study. Bourdieu’s definition of social capital may have emerged in a study of French professors, but it can still be relevant in a study of, say, how parents make choices about what preschools to send their kids to (also a good example of lateral thinking!).

If you are engaged in some novel methodological form of data collection or analysis, you might look for previous literature that has attempted that. I would not recommend this for undergraduate research projects, but for graduate students who are considering “breaking the mold,” find out if anyone has been there before you. Even if their study has absolutely nothing else in common with yours, it is important to acknowledge that previous work.

Describing Gaps in the Literature

First, be careful! Although it is common to explain how your research adds to, builds upon, and fills in gaps in the previous research (see all four literature review examples in this chapter for this), there is a fine line between describing the gaps and misrepresenting previous literature by failing to conduct a thorough review of the literature. A little humility can make a big difference in your presentation. Instead of “This is the first study that has looked at how firefighters juggle childcare during forest fire season,” say, “I use the previous literature on how working parents juggling childcare and the previous ethnographic studies of firefighters to explore how firefighters juggle childcare during forest fire season.” You can even add, “To my knowledge, no one has conducted an ethnographic study in this specific area, although what we have learned from X about childcare and from Y about firefighters would lead us to expect Z here.” Read more literature review sections to see how others have described the “gaps” they are filling.

Use Concept Mapping

Concept mapping is a helpful tool for getting your thoughts in order and is particularly helpful when thinking about the “literature” foundational to your particular study. Concept maps are also known as mind maps, which is a delightful way to think about them. Your brain is probably abuzz with competing ideas in the early stages of your research design. Write/draw them on paper, and then try to categorize and move the pieces around into “clusters” that make sense to you. Going back to the gymnasts example, my student might have begun by jotting down random words of interest: gymnasts * sports * coaches * female gymnasts * stress * injury * don’t complain * women in sports * bad coaching * anxiety/stress * careers in sports * pain. She could then have begun clustering these into relational categories (bad coaching, don’t complain culture) and simple “event” categories (injury, stress). This might have led her to think about reviewing literature in these two separate aspects and then literature that put them together. There is no correct way to draw a concept map, as they are wonderfully specific to your mind. There are many examples you can find online.

Ask Yourself, “How Is This Sociology (or Political Science or Public Policy, Etc.)?”

Rubin ( 2021:82 ) offers this suggestion instead of asking yourself the “So what?” question to get you thinking about what bridges there are between your study and the body of research in your particular discipline. This is particularly helpful for thinking about theory. Rubin further suggests that if you are really stumped, ask yourself, “What is the really big question that all [fill in your discipline here] care about?” For sociology, it might be “inequality,” which would then help you think about theories of inequality that might be helpful in framing your study on whatever it is you are studying—OnlyFans? Childcare during COVID? Aging in America? I can think of some interesting ways to frame questions about inequality for any of those topics. You can further narrow it by focusing on particular aspects of inequality (Gender oppression? Racial exclusion? Heteronormativity?). If your discipline is public policy, the big questions there might be, How does policy get enacted, and what makes a policy effective? You can then take whatever your particular policy interest is—tax reform, student debt relief, cap-and-trade regulations—and apply those big questions. Doing so would give you a handle on what is otherwise an intolerably vague subject (e.g., What about student debt relief?).

Sometimes finding you are in new territory means you’ve hit the jackpot, and sometimes it means you’ve traveled out of bounds for your discipline. The jackpot scenario is wonderful. You are doing truly innovative research that is combining multiple literatures or is addressing a new or under-examined phenomenon of interest, and your research has the potential to be groundbreaking. Congrats! But that’s really hard to do, and it might be more likely that you’ve traveled out of bounds, by which I mean, you are no longer in your discipline . It might be that no one has written about this thing—at least within your field— because no one in your field actually cares about this topic . ( Rubin 2021:83 ; emphases added)

Don’t Treat This as a Chore

Don’t treat the literature review as a chore that has to be completed, but see it for what it really is—you are building connections to other researchers out there. You want to represent your discipline or area of study fairly and adequately. Demonstrate humility and your knowledge of previous research. Be part of the conversation.

Supplement: Two More Literature Review Examples

Elites by harvey ( 2011 ).

In the last two decades, there has been a small but growing literature on elites. In part, this has been a result of the resurgence of ethnographic research such as interviews, focus groups, case studies, and participant observation but also because scholars have become increasingly interested in understanding the perspectives and behaviors of leaders in business, politics, and society as a whole. Yet until recently, our understanding of some of the methodological challenges of researching elites has lagged behind our rush to interview them.

There is no clear-cut definition of the term elite, and given its broad understanding across the social sciences, scholars have tended to adopt different approaches. Zuckerman (1972) uses the term ultraelites to describe individuals who hold a significant amount of power within a group that is already considered elite. She argues, for example, that US senators constitute part of the country’s political elite but that among them are the ultraelites: a “subset of particularly powerful or prestigious influentials” (160). She suggests that there is a hierarchy of status within elite groups. McDowell (1998) analyses a broader group of “professional elites” who are employees working at different levels for merchant and investment banks in London. She classifies this group as elite because they are “highly skilled, professionally competent, and class-specific” (2135). Parry (1998:2148) uses the term hybrid elites in the context of the international trade of genetic material because she argues that critical knowledge exists not in traditional institutions “but rather as increasingly informal, hybridised, spatially fragmented, and hence largely ‘invisible,’ networks of elite actors.” Given the undertheorization of the term elite, Smith (2006) recognizes why scholars have shaped their definitions to match their respondents . However, she is rightly critical of the underlying assumption that those who hold professional positions necessarily exert as much influence as initially perceived. Indeed, job titles can entirely misrepresent the role of workers and therefore are by no means an indicator of elite status (Harvey 2010).

Many scholars have used the term elite in a relational sense, defining them either in terms of their social position compared to the researcher or compared to the average person in society (Stephens 2007). The problem with this definition is there is no guarantee that an elite subject will necessarily translate this power and authority in an interview setting. Indeed, Smith (2006) found that on the few occasions she experienced respondents wanting to exert their authority over her, it was not from elites but from relatively less senior workers. Furthermore, although business and political elites often receive extensive media training, they are often scrutinized by television and radio journalists and therefore can also feel threatened in an interview, particularly in contexts that are less straightforward to prepare for such as academic interviews. On several occasions, for instance, I have been asked by elite respondents or their personal assistants what they need to prepare for before the interview, which suggests that they consider the interview as some form of challenge or justification for what they do.

In many cases, it is not necessarily the figureheads or leaders of organizations and institutions who have the greatest claim to elite status but those who hold important social networks, social capital, and strategic positions within social structures because they are better able to exert influence (Burt 1992; Parry 1998; Smith 2005; Woods 1998). An elite status can also change, with people both gaining and losing theirs over time. In addition, it is geographically specific, with people holding elite status in some but not all locations. In short, it is clear that the term elite can mean many things in different contexts, which explains the range of definitions. The purpose here is not to critique these other definitions but rather to highlight the variety of perspectives.

When referring to my research, I define elites as those who occupy senior-management- and board-level positions within organizations. This is a similar scope of definition to Zuckerman’s (1972) but focuses on a level immediately below her ultraelite subjects. My definition is narrower than McDowell’s (1998) because it is clear in the context of my research that these people have significant decision-making influence within and outside of the firm and therefore present a unique challenge to interview. I deliberately use the term elite more broadly when drawing on examples from the theoretical literature in order to compare my experiences with those who have researched similar groups.

”Changing Dispositions among the Upwardly Mobile” by Curl, Lareau, and Wu ( 2018 )

There is growing interest in the role of cultural practices in undergirding the social stratification system. For example, Lamont et al. (2014) critically assess the preoccupation with economic dimensions of social stratification and call for more developed cultural models of the transmission of inequality. The importance of cultural factors in the maintenance of social inequality has also received empirical attention from some younger scholars, including Calarco (2011, 2014) and Streib (2015). Yet questions remain regarding the degree to which economic position is tied to cultural sensibilities and the ways in which these cultural sensibilities are imprinted on the self or are subject to change. Although habitus is a core concept in Bourdieu’s theory of social reproduction, there is limited empirical attention to the precise areas of the habitus that can be subject to change during upward mobility as well as the ramifications of these changes for family life.

In Bourdieu’s (1984) highly influential work on the importance of class-based cultural dispositions, habitus is defined as a “durable system of dispositions” created in childhood. The habitus provides a “matrix of perceptions” that seems natural while also structuring future actions and pathways. In many of his writings, Bourdieu emphasized the durability of cultural tastes and dispositions and did not consider empirically whether these dispositions might be changed or altered throughout one’s life (Swartz 1997). His theoretical work does permit the possibility of upward mobility and transformation, however, through the ability of the habitus to “improvise” or “change” due to “new experiences” (Friedman 2016:131). Researchers have differed in opinion on the durability of the habitus and its ability to change (King 2000). Based on marital conflict in cross-class marriages, for instance, Streib (2015) argues that cultural dispositions of individuals raised in working-class families are deeply embedded and largely unchanging. In a somewhat different vein, Horvat and Davis (2011:152) argue that young adults enrolled in an alternative educational program undergo important shifts in their self-perception, such as “self-esteem” and their “ability to accomplish something of value.” Others argue there is variability in the degree to which habitus changes dependent on life experience and personality (Christodoulou and Spyridakis 2016). Recently, additional studies have investigated the habitus as it intersects with lifestyle through the lens of meaning making (Ambrasat et al. 2016). There is, therefore, ample discussion of class-based cultural practices in self-perception (Horvat and Davis 2011), lifestyle (Ambrasat et al. 2016), and other forms of taste (Andrews 2012; Bourdieu 1984), yet researchers have not sufficiently delineated which aspects of the habitus might change through upward mobility or which specific dimensions of life prompt moments of class-based conflict.

Bourdieu (1999:511; 2004) acknowledged simmering tensions between the durable aspects of habitus and those aspects that have been transformed—that is, a “fractured” or “cleft” habitus. Others have explored these tensions as a “divided” or “fragmented” habitus (Baxter and Britton 2001; Lee and Kramer 2013). Each of these conceptions of the habitus implies that changes in cultural dispositions are possible but come with costs. Exploration of the specific aspects of one’s habitus that can change and generate conflict contributes to this literature.

Scholars have also studied the costs associated with academic success for working-class undergraduates (Hurst 2010; Lee and Kramer 2013; London 1989; Reay 2017; Rondini 2016; Stuber 2011), but we know little about the lasting effects on adults. For instance, Lee and Kramer (2013) point to cross-class tensions as family and friends criticize upwardly mobile individuals for their newly acquired cultural dispositions. Documenting the tension many working-class students experience with their friends and families of origin, they find that the source of their pain or struggle is “shaped not only by their interactions with non-mobile family and friends but also within their own minds, by their own assessments of their social positions, and by how those positions are interpreted by others” (Lee and Kramer 2013:29). Hurst (2010) also explores the experiences of undergraduates who have been academically successful and the costs associated with that success. She finds that decisions about “class allegiance and identity” are required aspects of what it means to “becom[e] educated” (4) and that working-class students deal with these cultural changes differently. Jack (2014, 2016) also argues that there is diversity among lower-income students, which yields varied college experiences. Naming two groups, the “doubly disadvantaged” and the “privileged poor,” he argues that previous experience with “elite environments” (2014:456) prior to college informs students’ ability to take on dominant cultural practices, particularly around engagement, such as help seeking or meeting with professors (2016). These studies shed light on the role college might play as a “lever for mobility” (2016:15) and discuss the pain and difficulty associated with upward mobility among undergraduates, but the studies do not illuminate how these tensions unfold in adulthood. Neither have they sufficiently addressed potential enduring tensions with extended family members as well as the specific nature of the difficulties.

Some scholars point to the positive outcomes upwardly mobile youth (Lehmann 2009) and adults (Stuber 2005) experience when they maintain a different habitus than their newly acquired class position, although, as Jack (2014, 2016) shows, those experiences may vary depending on one’s experience with elite environments in their youth. Researchers have not sufficiently explored the specific aspects of the habitus that upwardly mobile adults change or the conflicts that emerge with family and childhood friends as they reach adulthood and experience colliding social worlds. We contribute to this scholarship with clear examples of self-reported changes to one’s cultural dispositions in three specific areas: “horizons,” food and health, and communication. We link these changes to enduring tension with family members, friends, and colleagues and explore varied responses to this tension based on race.

Further Readings

Bloomberg, Linda Dale, and Marie F. Volpe. 2012. Completing Your Qualitative Dissertation: A Road Map from Beginning to End . 2nd ed. Thousand Oaks, CA: SAGE. In keeping with its general approach to qualitative research, includes a “road map” for conducting a literature review.

Hart, Chris. 1998. Doing a Literature Review: Releasing the Social Science Research Imagination . London: SAGE. A how-to book dedicated entirely to conducting a literature review from a British perspective. Useful for both undergraduate and graduate students.

Machi, Lawrence A., and Brenda T. McEvoy. 2022. The Literature Review: Six Steps to Success . 4th ed. Newbury Park, CA: Corwin. A well-organized guidebook complete with reflection sections to prompt successful thinking about your literature review.

Ridley, Diana. 2008. The Literature Review: A Step-by-Step Guide for Students . London: SAGE. A highly recommended companion to conducting a literature review for doctoral-level students.

The process of systematically searching through pre-existing studies (“literature”) on the subject of research; also, the section of a presentation in which the pre-existing literature is discussed.

Follow-up questions used in a semi-structured interview  to elicit further elaboration.  Suggested prompts can be included in the interview guide  to be used/deployed depending on how the initial question was answered or if the topic of the prompt does not emerge spontaneously.

A tool for identifying relationships among ideas by visually representing them on paper.  Most concept maps depict ideas as boxes or circles (also called nodes), which are structured hierarchically and connected with lines or arrows (also called arcs). These lines are labeled with linking words and phrases to help explain the connections between concepts.  Also known as mind mapping.

The people who are the subjects of an interview-based qualitative study. In general, they are also known as the participants, and for purposes of IRBs they are often referred to as the human subjects of the research.

Introduction to Qualitative Research Methods Copyright © 2023 by Allison Hurst is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License , except where otherwise noted.

About Systematic Reviews

Qualitative Data Analysis in Systematic Reviews

Automate every stage of your literature review to produce evidence-based research faster and more accurately.

What is a qualitative systematic review.

A qualitative systematic review aggregates integrates and interprets data from qualitative studies, which is collected through observation, interviews, and verbal interactions. Included studies may also use other qualitative methodologies of data collection in the relevant literature. The use of qualitative systematic reviews analyzes the information and focuses on the meanings derived from it.

A qualitative systematic review generally follows the same steps as indicated by most systematic review guidelines , including the application of eligibility criteria in systematic reviews , and the steps for searching and screening available literature. All of these then conclude in the final write-up, which involves tabulating the data into a summary of findings table in the systematic review , and reporting on findings and conclusions. Qualitative systematic reviews are different in that, they incorporate qualitative studies and use only qualitative methods in analyzing and synthesizing data.

Why Are Qualitative Systematic Reviews Valuable?

Apart from the rigorous, methodical, and reproducible process used, qualitative systematic reviews derive their conclusions from qualitative data, they bring a human perspective into the process of answering the focused research question. This brings valuable findings, which cannot be expressed in quantitative means, into the view of the reader. Results that are better stated that calculated, like feelings of compliance or satisfaction following treatment using a new anti-depressant.

Another example, if a systematic review that deals with pain associated with a certain drug considers qualitative data, it can come up with conclusions that consider how subjects feel when taking the medicine, e.g., the level of pain and tolerance, etc.

Types Of Qualitative Systematic Reviews

Pioneers of qualitative systematic reviews suggest that qualitative systematic reviews can be segregated into two types: aggregated and interpretive.

Aggregated Systematic Review

An aggregated systematic review simply summarizes the collected data. It generates a summary of the studies using aggregate data obtained from individual studies within the scoped literature.

Interpretive Systematic Review

An interpretive systematic review, which is the more common of the two types, analyzes the data. From the analysis, researchers can derive a new understanding that may lead to the development of a theory and can help understand or predict behavior as it relates to the topic of the review.

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How to Analyze Data in a Qualitative Systematic Review

Qualitative systematic reviews deal with a lot of textual studies. This is why undertaking one requires a well-planned, systematic, and sustainable approach, as defined in your protocol. It also helps to employ literature review software like DistillerSR to take out a significant amount of manual labor, as it automates key stages in the entire methodology.

Here are four steps to take for qualitative data analysis in systematic reviews.

Collect and Review the Data

Based on your eligibility criteria, search and screen the studies relevant to your review. This involves scouring libraries and databases, gathering documents, and printing or saving transcripts. You can also check for studies in the reference lists of already eligible studies. The recommendation of similar articles by databases during searching should also be checked.

Once you’ve collected your data, get a sense of what it contains by reading the collected studies (you’ll likely need to do this several times).

This step can be easier with systematic review software, such as DistillerSR which gives you access to more sources and applies AI to identify the literature you need.

Create And Identify Codes

Connect your data by creating and identifying common ideas. Highlight keywords, and categorize information; it may even be helpful to create concept maps for easy reference.

Develop Themes

Combine your codes and revise them into themes, recognizing recurring concepts, language, opinions, beliefs, etc.

Derive Conclusions and Summarize Findings

Present the themes that you’ve collected in a cohesive manner, using them to answer your review’s research question. Finally, derive conclusions from the data, and summarize your findings in a report.

3 Reasons to Connect

Criteria for Good Qualitative Research: A Comprehensive Review

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

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

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

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Good Qualitative Research: Opening up the Debate

Beyond qualitative/quantitative structuralism: the positivist qualitative research and the paradigmatic disclaimer.

What is Qualitative in Research

Avoid common mistakes on your manuscript.

Introduction

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

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

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

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

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

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

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

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

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

Criteria for Evaluating Qualitative Studies

Fundamental criteria: general research quality.

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

Qualitative Research: Interpretive Paradigms

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

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

Improving Quality: Strategies

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

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

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

Essential elements of a conceptual framework

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

How to Assess the Quality of the Research Findings?

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

Quality Checklists: Tools for Assessing the Quality

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

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

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

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

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

Conclusions, Future Directions, and Outlook

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

Prospects : A Road Ahead for Qualitative Research

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

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

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

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

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

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

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

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

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

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The value and purpose of the traditional qualitative literature review

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• 1 School of Social Work, University of Connecticut, 1798 Asylum Ave., West Hartford, CT 06117, USA. [email protected]
• PMID: 21082469
• DOI: 10.1080/15433710903344116

Both meta-analysis and traditional literature or narrative reviews strive to compile a great deal of information in an accessible and succinct manner. In recent years, social work researchers have been turning toward meta-analysis to identify issues in large areas of research. In order for meta-analysis to be a rigorous and objective source of information there are a certain set of assumptions that must be met about how to carry out the process of including and excluding various studies. However, when these assumptions are not met, the information provided can be misleading. Traditional literature reviews continue to offer a valid and important way to identify existing patterns and gaps in social work research. In fact, because they draw not only on quantitative (as does meta-analysis) but also qualitative studies their reach may often be broader. This paper examines the strengths, weaknesses and utility of both practices in social work research today.

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Galdas P, Darwin Z, Fell J, et al. A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN). Southampton (UK): NIHR Journals Library; 2015 Aug. (Health Services and Delivery Research, No. 3.34.)

A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN).

Chapter 3 qualitative review methods.

The objective of the qualitative metaethnography was to systematically identify experiences of, and perceptions of, interventions or specific activities aimed at supporting or promoting self-management of LTCs among men of differing age, ethnicity and socioeconomic background.

A summary of the methods used in the metaethnography is provided in Appendix 3 , using the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) reporting standards for qualitative evidence synthesis, developed by Tong et al. 93

The evidence synthesis was conducted using a metaethnography approach originally described by Noblit and Hare. 94 This approach was chosen because of its emphasis on conceptual development and generating new insights (i.e. being interpretive rather than integrative 94 ) and because it is compatible with synthesising all types of qualitative research. 95

Metaethnography involves seven stages: getting started, deciding what is relevant, reading the studies, determining how studies are related to each other, translating studies into each other, synthesising translations and expressing the synthesis; 94 these seven, often overlapping, stages are depicted in Figure 7 .

Seven steps of metaethnography.

• Step 1: getting started

The first stage involved identifying a ‘worthy’ research question and one that could be addressed through qualitative evidence synthesis. 94 This stage took place in developing the original funding application for the current review and its justification is presented in Chapter 1 .

• Step 2: deciding what is relevant

The second stage, ‘deciding what is relevant’, was viewed as comprising the search strategy, inclusion criteria and quality appraisal, consistent with the experiences of Atkins et al. 96 These are presented next, before steps 3–7 are described in the section Data extraction strategy and data analysis .

• Search methods

Search strategy

A comprehensive electronic search strategy ( Appendix 4 ) was developed in liaison with information specialists. It sought to identify all available studies, rather than using purposive sampling to identify all available concepts. Five electronic databases were searched in July 2013 [Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBASE, MEDLINE, PsycINFO and Social Science Citation Index].

Because of challenges with methodological indexing of qualitative research, 97 the electronic search was complemented by checking reference lists, and using an adapted strategy published elsewhere 98 that includes ‘thesaurus terms’ (keywords indexed in electronic databases, e.g. ‘Qualitative Research’), ‘free text terms’ (commonly used research methodology terms searched for in the titles, abstracts and keywords) and ‘broad-based terms’ (i.e. the broad free-text terms ‘qualitative’, ‘findings’ and ‘interview$’ and the thesaurus term ‘Interviews’). Terms relating to gender were combined with other terms to narrow the search and increase the precision of the strategy (e.g. ‘men’, ‘male’, ‘masculine$’, ‘gender’, ‘sex difference$’, ‘sex factors’).

Study selection: study screening methods and inclusion criteria

Records were initially screened by one reviewer (ZD) on the basis of the title and abstract. Decisions were recorded in EndNote X7.0.2 (Thomson Reuters, CA, USA), a reference management database. All articles identified as potentially eligible for inclusion were obtained in full. Attempts were made to identify and obtain published findings for unpublished literature that was otherwise eligible, for example doctoral theses or conference proceedings.

The full-text literature was screened independently by two reviewers (ZD and PG) using the inclusion criteria listed in Table 5 . Studies that explored the experiences of men alone, or included a clear and explicit comparison between men and women, were included. Studies which focused on self-management experiences of people with LTCs more generally (i.e. did not consider experiences of, or perceptions of, a self-management support intervention or activity) were excluded. The approach to screening was inclusive; for example, studies where the qualitative findings were limited (e.g. Iredale et al. , 99 Ramachandra et al. , 100 Smith et al. 101 ) and mixed-sex studies with limited findings on gender comparisons (e.g. Barlow et al. 102 , 103 ) were retained in case they contributed to the synthesis.

Screening criteria: qualitative

• Classification of self-management interventions and support activities in the qualitative evidence synthesis

The original study protocol sought to code self-management interventions and support activities using the most up-to-date version of the taxonomy of BCT. 104 – 106 As in the quantitative review (see Chapter 2 , Coding interventions for analysis ), we found that the level of detail reported on self-management interventions or activities in the qualitative literature was limited in detail, precision and consistency, making coding with the BCT taxonomy unfeasible.

Most of the qualitative literature did not focus on behaviour change per se or seek to address men’s views and experiences of behaviour change techniques; for example, some papers were concerned with the dynamics of social support groups, or the use of other self-management support and information. The BCT taxonomy is applicable to only studies that are judged as targeting behaviour change; we were therefore limited to ‘lifestyle’ and ‘psychological’ studies. Only a minority of the studies ( n  = 13) provided sufficient information on interventions to allow even rudimentary coding with the BCT taxonomy, and these are presented in Appendix 5 . Issues around application of the BCT taxonomy are returned to in the discussion chapter (see Chapter 6 ).

The lack of detail reported in the qualitative literature also made it unfeasible to classify interventions using the system developed for the quantitative review. Whereas the quantitative review concerned trials of specific interventions, approximately half of the studies in the qualitative review 99 , 101 , 107 – 130 included more than one intervention or activity (e.g. ‘any cancer support group’).

We therefore developed a broad system for classifying interventions and support activities that offered a pragmatic way to group studies and make the analysis process more manageable. The categories are shown in Table 6 .

Categories and descriptions of self-management interventions and support activities in the qualitative evidence synthesis

• Quality assessment strategy

The purpose of quality appraisal in the review was to provide descriptive information on the quality of the included studies rather than as a basis for inclusion. We considered that studies of weaker quality either would not contribute or would contribute only minimally to the final synthesis. 94 , 131 We therefore chose not to use design-specific appraisal tools (which the original protocol stated we would) because we placed emphasis on conceptual contribution, which did not require a detailed design-specific appraisal of methodological quality. With that in mind, we used the Critical Appraisal Skills Programme (CASP) tool. 132

The CASP tool comprises 10 checklist-style questions (see Appendix 6 ) for assessing the quality of various domains (including aims, design, methods, data analysis, interpretation, findings and value of the research). Because of the checklist nature of the CASP tool, we developed some additional questions informed by other metaethnography studies 96 , 131 that enabled us to extract and record more detailed narrative summaries of the main strengths, limitations and concerns of each study (see Appendix 7 ).

The CASP tool was used in the light of the experiences reported by other researchers who recommended that, despite rather low inter-rater agreement, such an approach ‘encourag[es] the reviewers to read the papers carefully and systematically, and serves as a reminder to treat the papers as data for the synthesis’ (p. 44). 131

Its focus is on procedural aspects of the conduct of the research rather than the insights offered. 133 The quality appraisal (which focused on methodological quality) did not form part of the inclusion criteria because, as recognised by Campbell et al. , 131 it is conceptual quality that is most important for evidence synthesis and it is the process of synthesis that judges the ‘worth’ of studies, with conceptually limited studies making a limited contribution. 94 Additionally, it is acknowledged that agreement is often slight, with low reproducibility. 131 , 133 Appraisal was conducted by two reviewers independently (ZD and PG), with discrepancies resolved through discussion.

Search outcome

The electronic search strategy identified 6330 unique references. Screening based on title and abstract identified 149 papers for full-text screening. Dual screening of these full-text articles identified 34 studies (reported in 38 papers) to be included in the review. Reasons for excluding the remaining 111 articles are shown in Table 7 .

Reasons for exclusion of full-text articles

Inter-rater agreement on the decision to include was 88.6%. The majority of disagreements ( n  = 17) concerned the definition of self-management intervention or activity. Having discussed the 17 disagreements, we agreed that five studies on which there was disagreement would be included. 100 , 103 , 110 , 116 , 134

An additional four studies were identified through reference checks and efforts to locate published literature linked to unpublished work identified through the electronic search. 111 , 112 , 135 , 136 An additional two papers (women only), although individually ineligible, were located as ‘linked papers’ for two of the original 34 studies, 114 , 120 giving a total of 38 studies (reported in 44 papers), as shown in Figure 8 .

Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for the qualitative review.

• Data extraction strategy and data analysis

The lead reviewer (ZD) extracted all papers using data extraction forms previously tested and refined through a pilot study of four papers. All study details (including aim, participant details, methodology, method of data collection and analysis) were extracted into Microsoft Excel ® version 14 (Microsoft Corporation, Redmond, WA, USA) and checked by a second reviewer (PG). Extraction and analysis of study findings was undertaken by a group of coreviewers within the research team (ZD, PG, LK, CB, KM, KH) and followed steps 3–7 of the metaethnography process described by Noblit and Hare. 94 Despite being numbered sequentially, these phases do not occur in a linear process. 94

Step 3: reading the studies

The metaethnography process involved three levels of constructs, as described by Schutz 137 and operationalised by Atkins et al. : 96

• first-order: participant quotes and participant observations, while recognising that in secondary analysis these represent the participants’ views as selected by the study authors in evidencing their second-order constructs
• second-order: study authors’ themes/concepts and interpretations, also described by Noblit and Hare 94 as ‘metaphors’
• third-order: our ‘interpretations of interpretations of interpretations’ (p. 35), 94 based on our analysis of the first-order and second-order constructs extracted from the studies.

Each paper was read in full and copied verbatim into NVivo version 10 (QSR International, Warrington, UK) for line-by-line coding by the lead reviewer. Coding involved repeated reading and line-by-line categorising of first-order and second-order constructs, using participants’ and authors’ words wherever possible, and reading for possible third-order constructs.

Third-order constructs were developed by building second-order constructs into broader categories and themes in a framework which was revised iteratively using the hierarchical functions of the NVivo software (i.e. using ‘parent’ and ‘child’ nodes).

Rather than simply being a synthesis of the second-order constructs, third-order-constructs were derived inductively from the extracted data; this was an interpretive process that was not limited to interpretations offered by the original authors of included studies.

Coding by coreviewers (i.e. other members of the research team) was idiosyncratic but commonly involved working with printed papers, noting key ‘metaphors’ (themes, concepts and ideas) in the margins and highlighting first-order and second-order evidence that supported the coreviewers’ interpretations. The lead reviewer, ZD, met with each coreviewer to discuss/debrief coding decisions and ensure the credibility (i.e. the congruence of coding decisions with the original author interpretations) of the overall analytical process.

Step 4: determining how the studies are related

To offer a ‘way in’ to the synthesis, we adopted a similar approach to that of Campbell et al. : 131 initially grouping studies by the broad categories of self-management intervention and support activity shown in Table 6 . Each coreviewer was allocated one or more category of studies to analyse. The lead reviewer then read each category of studies in the following order: face-to-face group support, online support, online information, information, psychological, lifestyle and ‘various’; within this, she read the studies in alphabetical order of first author rather than nominating ‘key’ papers. All included papers were analysed, rather than reading until saturation of concepts.

The lead reviewer and coreviewer independently completed matrices to report the second-order constructs and emerging third-order constructs for each paper (which for the lead reviewer were based on a more comprehensive line-by-line coding using NVivo). This facilitated the juxtaposing of metaphors and/or constructs alongside each other, leading to initial assumptions about relationships between studies.

Step 5: translating studies into one another

A defining element of metaethnography is the ‘translation’ of studies into each other, whereby metaphors, together with their inter-relationships, are compared across studies. Facilitated by discussions using the matrices of second- and third-order constructs, we translated studies firstly within types of support activity and then, secondly, across types.

The lead reviewer initially developed the constructs in relation to face-to-face support (the largest category of studies) and read other categories of studies with reference to this, using a constant comparison approach to identify and refine concepts. The ‘models’ function in NVivo was used to depict relationships between third-order constructs; this helped to develop the line-of-argument synthesis, which is discussed next.

Step 6: synthesising translations

Studies can be synthesised in three ways: 94

• reciprocal translation, where the findings are directly comparable
• refutational translation, where the findings are in opposition
• a line-of-argument synthesis, where both similarities and contradictions are found and translations are encompassed in one overarching interpretation that aims to discover a whole among the set of parts, uncovering aspects that may be hidden in individual studies.

Because we found similarities and contradictions, we developed a line-of-argument synthesis (rather than reciprocal or refutational translation) that encompassed four key concepts, each of which was based around a set of third-order constructs.

Step 7: expressing the synthesis

The output of the synthesis, that is communicating our third-order concepts and overarching line-of-argument synthesis, is described by Noblit and Hare 94 as ‘expressing the synthesis’ (p. 29). They state that ‘the worth of any synthesis is in its comprehensibility to some audience’ (p. 82), 94 emphasising the importance of communicating the synthesis effectively, being mindful of the intended audience and using concepts and language that are meaningful (and understandable). We worked to make the synthesis comprehensible by discussion with coreviewers and, critically, through involvement of the patient and public involvement (PPI) group. The synthesis is presented in Chapter 5 and will also be expressed through other dissemination activities, for example the SELF-MAN symposium ( www.self-man.com ), mini-manuals and journal publications.

We undertook several steps to enhance the rigour of our analysis. Authors’ themes and interpretations (second-order constructs) were independently extracted by two reviewers, each of whom additionally suggested their own interpretations of the study findings (third-order constructs).

We were influenced by a recent Health Technology Assessment metaethnography which found multiple reviewers offered ‘broad similarities in interpretation, but differences of detail’ (p. x). 131 We therefore treated the lead reviewer’s analyses as the ‘master copy’ and compared these with the coreviewers’ extractions and interpretations. Peer debriefing meetings were held between the lead reviewer and each coreviewer to discuss matrices of second-order and third-order constructs which facilitated the consideration of alternative interpretations.

The third-order constructs and line-of-argument synthesis were further refined at a full-day meeting (January 2014) attended by the lead qualitative reviewer and wider team of five coreviewers involved in coding, extraction, analysis and interpretation (PG, KH, LK, KM, CB).

We identified the need to be reflexive about our interpretations and recognised potential sources of influence on our interpretations; for example, two reviewers (PG, KH) identified having a ‘constructions of masculinity’ lens, and we agreed to focus the line-of-argument synthesis on interpretations offered by authors of studies being synthesised, rather than framing our interpretations around constructions of masculinity. We considered it a strength that the six reviewers involved reflected a wide range of backgrounds and perspectives. Although PPI colleagues were not involved in the coding process, the line-of-argument synthesis and four key concepts were discussed with the PPI group to ensure credibility.

• Public and patient involvement

The SELF-MAN research team worked with a specially constituted public and patient advisory group comprising men living with one or more LTCs who were involved in either running or attending a LTC support group in the north of England. Members were recruited via the research team’s existing networks. Stakeholders’ support groups were all condition-specific – arthritis ( n  = 1), diabetes ( n  = 1), heart failure ( n  = 2) and Parkinson’s disease ( n  = 1) – although some men lived with multiple LTCs. All stakeholders attended a welcome meeting prior to the commencement of the study to prepare them for the involvement in the research, and were provided with ongoing support and guidance by the chief investigator throughout the research process. Members were reimbursed for travel, expenses and time throughout the duration of the project (in line with current INVOLVE recommendations 138 ).

The overarching aims of PPI in the project were, first, to help ensure that the review findings spoke to the self-management needs and priorities of men with LTCs, and, second, to ensure the development of appropriate outputs that would have benefit and relevance for service users. A recognised limitation of our group was that stakeholder representation was drawn from face-to-face group-based support interventions.

The stakeholder group met on three half-days over the course of the 12-month project. On each occasion, the group provided positive affirmation that the project was being conducted in accordance with its stated objectives. In the first two meetings, the group offered feedback and advice to the investigative team on preliminary and emerging analysis of the qualitative data throughout the research process: specifically, the development of third-order constructs and the line-of-argument synthesis. Responding to their input, we made revisions to some of our interpretations, particularly in relation to the importance of physical aspects of environments in which interventions took place. The group’s input also highlighted the need for future research to address depression as a common and often overlooked comorbidity in men (see Chapter 7 , Recommendations for future research ), and that they welcomed recommendations for sustainability of support groups and improving communication within groups. When considering the key outcomes to be assessed in the quantitative review, stakeholders also recommended that emphasis should be placed on quality-of-life outcome measures when considering whether or not a self-management support intervention is effective.

In the final meeting, the stakeholder group provided detailed recommendations for the content of the Self-Manual: Man’s Guide to Better Self-Management of Long Term Conditions (not yet available). It advised that the guide should be rephrased from ‘how to’ self-manage to ‘how to better ’ self-manage because men may view themselves as already self-managing and therefore not identify with the former.

Six or seven stakeholders attended each meeting. The female partner of one of the men attended and contributed to discussions at each meeting. Members of the group each received reimbursement of travel expenses and a £150 honorarium for each meeting they attended. In the final meeting, the stakeholders provided feedback on their involvement in the research process overall, focusing on what was done well and what could be improved. Feedback indicated that most stakeholders had a positive experience, particularly valuing the opportunity to have their ‘voices heard’ and make a potential impact on future service delivery. Recommendations for improvements mostly centred on ensuring prompt reimbursement of expenses incurred in attending the meetings.

Included under terms of UK Non-commercial Government License .

• Cite this Page Galdas P, Darwin Z, Fell J, et al. A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN). Southampton (UK): NIHR Journals Library; 2015 Aug. (Health Services and Delivery Research, No. 3.34.) Chapter 3, Qualitative review methods.
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• Literature Review Guidelines

Making sense of what has been written on your topic.

Goals of a literature review:.

Before doing work in primary sources, historians must know what has been written on their topic.  They must be familiar with theories and arguments–as well as facts–that appear in secondary sources.

Before you proceed with your research project, you too must be familiar with the literature: you do not want to waste time on theories that others have disproved and you want to take full advantage of what others have argued.  You want to be able to discuss and analyze your topic.

Your literature review will demonstrate your familiarity with your topic’s secondary literature.

GUIDELINES FOR A LITERATURE REVIEW:

1) LENGTH:  8-10 pages of text for Senior Theses (485) (consult with your professor for other classes), with either footnotes or endnotes and with a works-consulted bibliography. [See also the  citation guide  on this site.]

2) NUMBER OF WORKS REVIEWED: Depends on the assignment, but for Senior Theses (485), at least ten is typical.

3) CHOOSING WORKS:

Your literature review must include enough works to provide evidence of both the breadth and the depth of the research on your topic or, at least, one important angle of it.  The number of works necessary to do this will depend on your topic. For most topics, AT LEAST TEN works (mostly books but also significant scholarly articles) are necessary, although you will not necessarily give all of them equal treatment in your paper (e.g., some might appear in notes rather than the essay). 4) ORGANIZING/ARRANGING THE LITERATURE:

As you uncover the literature (i.e., secondary writing) on your topic, you should determine how the various pieces relate to each other.  Your ability to do so will demonstrate your understanding of the evolution of literature.

You might determine that the literature makes sense when divided by time period, by methodology, by sources, by discipline, by thematic focus, by race, ethnicity, and/or gender of author, or by political ideology.  This list is not exhaustive.  You might also decide to subdivide categories based on other criteria.  There is no “rule” on divisions—historians wrote the literature without consulting each other and without regard to the goal of fitting into a neat, obvious organization useful to students.

The key step is to FIGURE OUT the most logical, clarifying angle.  Do not arbitrarily choose a categorization; use the one that the literature seems to fall into.  How do you do that?  For every source, you should note its thesis, date, author background, methodology, and sources.  Does a pattern appear when you consider such information from each of your sources?  If so, you have a possible thesis about the literature.  If not, you might still have a thesis.

Consider: Are there missing elements in the literature?  For example, no works published during a particular (usually fairly lengthy) time period?  Or do studies appear after long neglect of a topic?  Do interpretations change at some point?  Does the major methodology being used change?  Do interpretations vary based on sources used?

Follow these links for more help on analyzing  historiography  and  historical perspective .

5) CONTENTS OF LITERATURE REVIEW:

The literature review is a research paper with three ingredients:

a) A brief discussion of the issue (the person, event, idea). [While this section should be brief, it needs to set up the thesis and literature that follow.] b) Your thesis about the literature c) A clear argument, using the works on topic as evidence, i.e., you discuss the sources in relation to your thesis, not as a separate topic.

These ingredients must be presented in an essay with an introduction, body, and conclusion.

6) ARGUING YOUR THESIS:

The thesis of a literature review should not only describe how the literature has evolved, but also provide a clear evaluation of that literature.  You should assess the literature in terms of the quality of either individual works or categories of works.  For instance, you might argue that a certain approach (e.g. social history, cultural history, or another) is better because it deals with a more complex view of the issue or because they use a wider array of source materials more effectively. You should also ensure that you integrate that evaluation throughout your argument.  Doing so might include negative assessments of some works in order to reinforce your argument regarding the positive qualities of other works and approaches to the topic.

Within each group, you should provide essential information about each work: the author’s thesis, the work’s title and date, the author’s supporting arguments and major evidence.

In most cases, arranging the sources chronologically by publication date within each section makes the most sense because earlier works influenced later ones in one way or another.  Reference to publication date also indicates that you are aware of this significant historiographical element.

As you discuss each work, DO NOT FORGET WHY YOU ARE DISCUSSING IT.  YOU ARE PRESENTING AND SUPPORTING A THESIS ABOUT THE LITERATURE.

When discussing a particular work for the first time, you should refer to it by the author’s full name, the work’s title, and year of publication (either in parentheses after the title or worked into the sentence).

For example, “The field of slavery studies has recently been transformed by Ben Johnson’s The New Slave (2001)” and “Joe Doe argues in his 1997 study, Slavery in America, that . . . .”

Your paper should always note secondary sources’ relationship to each other, particularly in terms of your thesis about the literature (e.g., “Unlike Smith’s work, Mary Brown’s analysis reaches the conclusion that . . . .” and “Because of Anderson’s reliance on the president’s personal papers, his interpretation differs from Barry’s”). The various pieces of the literature are “related” to each other, so you need to indicate to the reader some of that relationship.  (It helps the reader follow your thesis, and it convinces the reader that you know what you are talking about.)

7) DOCUMENTATION:

Each source you discuss in your paper must be documented using footnotes/endnotes and a bibliography.  Providing author and title and date in the paper is not sufficient.  Use correct Turabian/Chicago Manual of Style form.  [See  Bibliography  and  Footnotes/Endnotes  pages.]

In addition, further supporting, but less significant, sources should be included in  content foot or endnotes .  (e.g., “For a similar argument to Ben Johnson’s, see John Terry, The Slave Who Was New (New York: W. W. Norton, 1985), 3-45.”)

8 ) CONCLUSION OF LITERATURE REVIEW:

Your conclusion should not only reiterate your argument (thesis), but also discuss questions that remain unanswered by the literature.  What has the literature accomplished?  What has not been studied?  What debates need to be settled?

Additional writing guidelines

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• Open access
• Published: 26 August 2024

“It’s easier to take a pill than fix a problem:” qualitative analysis of barriers and facilitators to antimicrobial stewardship program implementation in carceral settings

• Rebecca A. Tenner 1 , 2   na1 ,
• Emily D. Grussing 1 , 3   na1 ,
• David Manning 1 , 2 ,
• Yvane Ngassa 1 ,
• Jacob J. van den Berg 3 ,
• Gabriela Andujar Vazquez 1 , 3 ,
• Shira Doron 1 , 3 ,
• Maureen Campion 1 &
• Alysse G. Wurcel 1 , 3  

BMC Global and Public Health volume  2 , Article number:  59 ( 2024 ) Cite this article

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Widespread antibiotic prescribing contributes to globally emerging antimicrobial resistance (AMR). Despite stewardship recommendations by the Infectious Diseases Society of America, there is a lack of literature identifying barriers and facilitators to antimicrobial stewardship programs (ASPs) in United States (U.S.) carceral settings.

Guided by the Theoretic Domains Framework, we performed in-depth interviews with 68 key stakeholders in Massachusetts carceral settings to contextualize barriers and facilitators to ASP implementation. We recruited 32 people incarcerated in Massachusetts jails and 36 carceral clinicians, correctional officers/administrators in Massachusetts and other U.S. states, and Massachusetts community clinicians for interviews.

From the completed semi-structured in-depth interviews, we identified seven salient themes—four barriers and three facilitators—both specific to and across stakeholder groups. Barriers included the following: (1) jail being viewed as a “dirty place” that increases the risk of infections; (2) variable awareness and knowledge of AMR and ASPs; (3) clinicians’ opposition to change and oversight of their antibiotic prescribing; (4) competing priorities taking precedence over ASP implementation. Facilitators included (5) interest in changing the narrative about carceral healthcare through ASP implementation; (6) opportunities for education about ASP and AMR; and (7) the development of systems, policies, and regulations to improve antibiotic prescribing.

Conclusions

To our knowledge, this is the first qualitative study to leverage broad criminal-legal stakeholder groups to inform the next steps in developing and implementing ASPs in carceral settings in the U.S.

Peer Review reports

By 2050, an estimated 10 million people will die annually from antimicrobial-resistant (AMR) infections [ 1 ]. To facilitate AMR prevention, the United States (U.S.) Centers for Disease Control and Prevention (CDC) encourages the implementation of antimicrobial stewardship programs (ASP) in all healthcare facilities [ 2 , 3 , 4 ]. Core elements of ASPs focus on tracking antimicrobial prescriptions, gathering local resistance data, providing feedback to prescribers, and educating about the dangers of AMR. Optimally, ASP initiatives involve prescribers, nurses, pharmacists, healthcare administrators, and patients, while also adjusting to setting-specific needs [ 2 ].

In the U.S., an estimated 1.8 million people are incarcerated, a population greater than any other country in the world [ 5 ]. The spectrum of U.S. carceral settings is broad, people jails (short-term detention centers), prisons (long-term detention centers), and also extends to community carceral programs (e.g., probation and parole.) Healthcare coverage for people who are incarcerated is a complex system, although there are several useful resources published that can help guide learning [ 6 , 7 ]. People who are incarcerated typically lose their insurance coverage [ 8 ], and healthcare is provided by clinicians employed either by a government-entity (either at the county, state, or federal level) or by for-profit medical vendors [ 9 ]. The level of infectious diseases healthcare delivery available varies depending on the state and the type of settings. Most jails and prisons have clinicians who provide acute and chronic infection management and have the ability to send people to community emergency rooms for evaluation of life-threatening infections. Most clinical interactions in jails and prisons occur with nurses [ 10 , 11 , 12 ], who then escalate concerns to the staff clinicians, including Nurse Practitioners (NP), Physician Associates (PA), Doctors of Medicine (MD), and Doctors of Osteopathic Medicine (DO).

People with criminal-legal experience—a term used to describe persons who are either currently incarcerated or have been incarcerated—are at increased risk for several infectious diseases (e.g., methicillin-resistant Staphylococcus aureus (MRSA), pneumococcal disease, meningococcus) [ 13 , 14 , 15 , 16 , 17 , 18 ]. A recent study from Chicago found that about 1/5 of men entering the jail were colonized with MRSA [ 19 ]. Psychiatric diseases and drug use disorder, which are highly prevalent in carceral facilities, are also linked to an increased risk of infectious diseases [ 20 , 21 , 22 , 23 ]. Although vaccines are powerful tools to prevent bacterial infections, as evidence by the COVID-19 pandemic, people who are incarcerated report increase mistrust in vaccines and face systemic barriers to vaccination [ 24 , 25 , 26 ]. Rates of vaccination, health literacy, and preventative care received in the community setting are lower among people who have lived experience of incarceration—people who are disparately marginalized in society, including individuals who are Black, Hispanic/Latinx, Indigenous, of lower socioeconomic classes, or people with substance use disorder [ 27 , 28 , 29 , 30 , 31 ].

Despite the prevalence of infectious diseases in carceral settings, there are, to our knowledge, only two peer-reviewed articles on ASP implementation in U.S. carceral settings—both from the Federal Bureau of Prisons [ 32 , 33 ]. In 2021, our research team found heterogeneity in antibiotic prescribing in Massachusetts (MA) houses of corrections [ 34 ], which has motivated the development of this project. The goal of the current qualitative study was to conduct in-depth interviews to understand the perspectives of people who reside in, work in, or collaborate with carceral facilities in MA to identify barriers and facilitators related to the implementation of ASP.

Identification of stakeholders

We identified four groups of people for in-depth interviews and partnered with five jails in MA to facilitate participant recruitment. The first group included adult men and women currently incarcerated in four MA jails aged 18 or older who spoke English or Spanish. We will refer to this group as “people who are incarcerated” henceforth. The second group included clinicians (MD, DO, PA, NP, PharmD, Dentists, Dental Assistants, Registered Nurse (RN), and Licensed Practical Nurse (LPN)) at five MA jails. We will refer to them as “carceral clinicians.” The third group included jail administrators (e.g., correctional officers and superintendents) from three MA jails. This group will be referred to as “carceral administrators.” The fourth and final group included clinicians who either worked in Massachusetts providing healthcare to people in the community (i.e., not during incarceration) but worked in settings with high rates of people getting healthcare who had a history of incarceration. We will refer to them as “community clinicians” henceforth. Table 1 demonstrates where recruitment was approved for each carceral-based stakeholder group. As there are different models of healthcare, we included sites with healthcare through medical vendors and sites with healthcare through the county.

Interview guide development

Following a literature review of qualitative methodology on barriers and facilitators to ASP implementation in healthcare settings, the research team iteratively developed interview guides for each of the four groups described using inductive and deductive practices. The Theoretical Domains Framework (TDF) and Consolidated Framework for Implementation Research (CFIR) guided the inductive question development. CFIR provided a “meta-view” of ASP implementation, and the TDF helped to conceptualize behaviors that support or deter ASP implementation [ 35 ]. The interview guide for carceral clinicians also included questions about the existence of or potential for CDC’s Core Elements for Outpatient Antibiotic Stewardship (Commitment, Action for Policy & Change, Antibiotic Tracking, and Expertise) [ 36 ]. All interview guides included an informational introduction, which included verbal consent for recording to proceed with the interview. Upon interview conclusion, interviewers asked demographic questions, including age, race, ethnicity, and highest level of education. All interview guides were piloted and refined (Additional file 1 ).

Recruitment and data collection

People who are incarcerated were invited to participate during their group programming, such as morning meetings, infectious diseases education classes, and when visiting the facility’s infirmary. A script was read in both English and Spanish at these events and people interested in participating met individually with research team members. Carceral clinicians and carceral administrators were recruited during visits to jails and via emails. Community clinicians were identified through networks of research team members. Depending on the jail and other employment regulations, carceral clinicians, carceral administrators, and community clinicians were offered a $50 payment in the form of an Amazon or Home Depot gift card. The institutional review board and jail policies did not allow for payments to be made to people who were incarcerated. Participants were also given the option to donate their $50 to Big Brothers Big Sisters of Eastern Massachusetts or to refuse any payment. Audio recording of interviews was requested. Participants could opt out, in which case written notes were taken by a research team member. Individuals completed the interview with study a team member in private and confidential rooms identified by the hosting facility for people who were incarcerated, carceral clinicians, and carceral administrators. Carceral clinicians, carceral administrators, and community clinicians had the option to complete interviews via Zoom. Interviews were conducted until thematic saturation was reached.

Data analysis

Transcripts (audio) and notes (written notes) were uploaded to Dedoose [ 37 ]. Inductive Thematic Analysis (ITA) methods guided data analysis [ 38 ]. An initial codebook (Additional file 2 ) was developed based on interview guides, and the review of 10 randomly selected transcripts to represent each participant group and subgroup. The analytic team (RAT, EDG, YN, AGW, DM) compared coding patterns, and the codebook was refined until a consensus was reached. Discrepancies were resolved through a comparison and consensus process [ 39 ]. Quotations were compiled, and concepts and relationships leading to codes and core themes were identified.

A consolidated criteria for reporting qualitative research (COREQ) checklist has been completed to ensure study credibility (Additional file 3 ).

Sixty-eight participants completed an in-depth interview, including 32 people who are incarcerated, 22 carceral clinicians, 7 correctional administrators and officers, and 7 community clinicians (Table  2 ). The self-reported race and ethnicity and gender demonstrate successful recruitment of people who are from racially and ethnically minoritized communities. Two interviews were not audio recorded per participant preference. Two interviews were conducted in Spanish with incarcerated people.

Theme 1: Jail being viewed as a “dirty place” that increases the risk of infections

Many participants expressed concern that carceral settings are seen as “dirty places” where infections are common, especially MRSA. A person who was incarcerated conveyed this sentiment as, “If it wasn’t that somebody told me about the whole MRSA thing, or anything in here, I would not have a clue about how dirty this place is until I actually came in here and started meeting people and started talking to people.” There is also a perception among healthcare providers that people who are incarcerated frequently request antibiotics for minor ailments or injuries due to a heightened sense of paranoia about the cleanliness of the jail environment and concerns about potential infections like MRSA. A carceral clinician described this as, “[People who are incarcerated] usually want antibiotics for just about everything. They come up with just a little nick on their finger and think they need an antibiotic with no signs of infection at all. They’re really paranoid about the dirtiness of the jail. And they also think that everything is MRSA, which I understand.” A personal perspective from a person who was incarcerated illustrates how even minor injuries are perceived as serious health risks in the carceral setting, leading to a desire for immediate medical intervention, such as antibiotics, to prevent further complications. This participant said, “I have a little tiny cut on my finger from a razor. Something like that could actually get severely worse…to the point that literally my finger could get infected, and down the road, I’m dealing with a way serious issue other than a little tiny baby cut from a razor blade… but now I’m like, ‘Oh shit, give me a band aid. Give me this, give me that, give me antibiotics, which I was happy that they were already putting me on.’”.

Because of this sentiment, carceral clinicians face pressure from people who are incarcerated when it comes to medical treatment, particularly regarding their choice of antibiotics. People who are incarcerated expressing a preference for the medication can be perceived as undermining by the carceral clinician, contributing to tension between the two individuals. Additionally, some clinicians may be concerned about potential legal ramifications, such as lawsuits, which influence their decision-making process regarding medical care in the carceral setting. A carceral administrator noted, “I think the providers get a lot of pressure from inmates also….. I want this. I don’t want that antibiotic. It didn’t work for me. I want this. And some providers will push back and say, ‘Well, we’re going to try this, and this is it.’ ….patients can be pretty pushy about what they want, and then the providers are not wanting to get a lawsuit or get sued, because there’s a lot of litigation in corrections.” A carceral clinician talked about their experience providing care, “You really feel that tension that you want to get to the next patient, but you have to take care of the person who’s in front of you. You don’t wanna shortchange or cut corners and give shoddy care so you’re looking at that tension between giving good care and seeing patients in a timely fashion. That’s the reality.” Another carceral clinician said, “I think most patients want the antibiotic. They understand that jail and prison is a dirty place. They’re scared. They want something. It’s easier to take a pill than fix a problem.”

Theme 2: Variable awareness and knowledge about AMR and ASPs

Although many people who are incarcerated mentioned MRSA, there was a lack of general knowledge about AMR. This was exemplified when asked what they thought the term “antimicrobial resistance” meant. One person who was incarcerated said, “Maybe that you’re allergic?” and another responded with, “Maybe when your antibodies don’t work anymore?”.

There were some people who were incarcerated who conveyed an understanding about the difference between bacterial and viral infections as it relates to treatment they received in the past. One person who was incarcerated said, “The willingness just to sort of give in to people because they think they need an antibiotic, when you are the prescriber, and you theoretically should probably know better than them if they need an antibiotic. You know those Z-Paks, those five-day packs, they used to hand those out. I had a doctor who gave them to me without even prescribing to me. Just gave me samples of them from the office. Like, ‘Here, take a Z-Pak.’ And I’m like, ‘Buddy, I have a cold.’”.

While many did not, several people who were incarcerated were able to identify hallmarks of AMR when probed. For example: “I know all about it. The human body and the bugs adapt much like viruses do. And the more we use antibiotics, the more virulent the bacteria become because they become adapted to it. Well, probably not a good example, but just like people using drugs and alcohol. You use more and more of it, you need more and more of it to get the job done, and it gets to the point where antibiotics stop being effective.” Regardless of whether people who were incarcerated knew about AMR or ASPs, most were interested in improving the healthcare they received and felt AMR should be addressed. One person who was incarcerated did not know what AMR was, but when informed, they said, “We need more awareness…so we can know what’s going on. What’s getting us to the point where we’re using so much [sic] antibiotics? Why are we using antibiotics? What infections are you getting that we have to do this? Why does it keep happening?”.

Less than 50% of the clinicians interviewed were aware of and knowledgeable about ASPs. When presented with the CDC Core Elements, clinicians employed in the same facility gave discordant answers to those core elements (Fig.  1 ). This lapse in knowledge among carceral clinicians was evident to the people who were incarcerated as well. When asked about the perspectives of jail clinicians on AMR, someone who was incarcerated responded, “I’m not so sure they are even aware of it.”

Prescriber-specific responses to CDC core elements matrix

Several carceral clinicians did reveal their concerns about AMR and steps taken to mitigate its spread. One explained their patient education about antibiotic use, stating that, “Certain providers definitely are more concerned about it.” One of the carceral clinicians who expressed concern about AMR shared their perspective: “[Explaining why antibiotics are not appropriate] is actually really important to me because it’s a huge problem. Well, around the world and in our country, we over-prescribe antibiotics.” Another carceral clinician talked about how they took stock of their own antibiotic choices internally, “I’m watching every patient I’m seeing, the clinical response, and ultimately I want make sure that they get the right response and I’m choosing my antibiotics based on, what is the evidence and what I think would be the best one to use and with the scenario focus, so that I’m not overutilizing or using too much of an antibiotic.”

While these carceral clinicians were concerned about AMR and even undertook individual stewardship methods, the majority of carceral clinicians were not. Typical responses from carceral clinicians, when probed about their concern level for AMR, were “I don’t think we really have any concerns about AMR,” and, “Certain providers are definitely more concerned about it [than me].” Often, this lack of concern was not due to apathy about AMR in general, but due to competing interests. One carceral clinician stated, “There’s just other issues that are being talked about more often.”

Theme 3: Clinicians’ opposition to change and oversight of their antibiotic prescribing

When asked about optimizing antibiotic prescribing and administration, one carceral clinician expressed confidence in the current practices, stating, “I think we pretty much have everything covered, as far as we have access to everything here. I think we do exactly what we’re supposed to be doing. I can’t see that we could do anything differently.” Similarly, other carceral clinicians echoed this response, remarking, “I don’t see a problem with the way that things are done now.” Additionally, there was a prevalent culture of refraining from questioning fellow prescribers’ antibiotic choices, as exemplified by a carceral clinician who stated, “There’s not a lot of situations where I question their medical judgment or their course of treatment…They have their practice pattern and I certainly respect that, but like I said, I practice differently.”

One carceral clinician shared how some healthcare providers might be resistant to feedback and adhere to personal practice preferences, “We had a doctor here that [sic] thought he was treating very aggressively, so he would order Bactrim DS two tablets twice a day for 14 days, and it came to be his thing. And we were like, ‘Doc, it’s too much for somebody that size. The pharmacy didn’t like that order.’ He’s like, ‘That’s ridiculous. I’m the doctor. I’ve done this in the past, I’m comfortable with it.’” Another carceral clinician pointed out that standardizing antibiotic prescribing practices is challenging due to the variability of infections and individual responses to treatments, acknowledging the complexity of the issue and the difficulty in finding a straightforward solution, commenting that, “It’s hard to really streamline antibiotic prescribing because everyone’s different and there’s different bugs that cause different infections. You can’t say, ‘Oh, put everybody on amoxicillin for a dental infection.’ It doesn’t always work that way, even though that’s the standard of care for, let’s say a simple infection in the mouth. It’s hard to streamline that. It really is. I don’t know if there’s a way to do it. If there is, I’m not that aware of it or it doesn’t come to my mind readily.” Another carceral clinician said, “A lot of people in general, just in life in general don’t like change. All of a sudden, you’re bringing in a new program, like, ‘What does this mean? Do people start reflecting on their own practice? Are they gonna start to scrutinize what I do?’” A person who was incarcerated echoed this sentiment when talking about carceral clinicians at their facility, “They’re pretty set in their ways.” During an interview, it was noted that one clinician was using a 2009 antibiotic guideline to make decisions on antibiotics. When asked if he would ever seek out an updated reference text, the clinician said that he felt the information was still accurate.

Theme 4: Competing priorities more important than ASP implementation

Constraints in resources such as time and money were repeatedly reported as impacting the focus on AMR and ASPs. According to one carceral administrator, “The reason that there are not already ASPs in correctional settings is because there’s not a lot of glamour here, not a lot of investment.” Carceral clinicians, carceral administrators, and community clinicians commented on the challenges of prioritizing ASPs in the already overwhelmed carceral facility. A carceral clinician elaborated, “Not to take away from antibiotic resistance, but there’s just other issues that are being talked about more often. I don’t mean to sound like it doesn’t get brought up. I know that it’s at the forefront of all the providers’ minds when they’re prescribing, especially because a lot of these patients are constantly in and out of here. They’re in and out of ERs. They’ve been prescribed antibiotics a lot. We have a lot of substance users that get abscesses from needles and certain things like that. So, there are a lot of infections, there are a lot of sicknesses, but I just don’t hear about it as much.”

A carceral administrator reflected on the prioritization of healthcare issues within correctional facilities, noting, “I think if you’re looking at the top 10 issues that happen at a site, we’re focused on deaths, suicides, homicides, COVID, trauma, drugs, and I think it’s one of those things where it’s like it hasn’t happened where we’re in a position where we can’t prescribe any longer. It’s like this isn’t good for the future, this isn’t good for this patient, but it’s not actually impacting them in any way. So, I think it’s just kind of on the back burner.” Aside from their opinion on the importance of AMR, many carceral administrators felt that they were overburdened by medical issues. One individual stated, “I do not wish I was more integrated into the medical sector of this facility because I already do enough.”

A community clinician offered further insights into the challenges faced by healthcare systems within correctional facilities, explaining, “My impression of healthcare systems within the carceral system is that there is a lot more need than there is bandwidth or money or services or resources. And so, I think making the case that this is important, and matters is probably going to be the biggest thing. I don’t imagine that correctional officers are just morally opposed to antibiotic stewardship or something like that. I don’t think that that’s the case, but I think it does need to be impressed upon on people that this is actually a big, really bad problem.”

Facilitators

Theme 5: interest in changing the narrative about carceral healthcare through asp implementation.

Several participants recognized society’s negative perception of jail conditions and emphasized the potential for those working within these institutions to drive significant change for people who are incarcerated. A carceral administrator said, “I’ve been doing work on my side of the business for more than 30 years. I think there is a, sometimes, an unfair characterization of corrections as being not humanistic and not empathetic. My experience, and particularly my experience over the last several years, has been quite the opposite. I would encourage the work that you're doing. Know that there are allies in the field that [sic] would help support you in your work, that appreciate your work, and would really like to help to partner to bring that work behind the walls.”

Administrators also reflected on previous healthcare initiatives to gauge the potential for ASP implementation success and interest in improving healthcare delivery to people who are incarcerated. Discussions often revolved around initiatives such as medication-assisted treatment provision for individuals with substance use disorder within several Massachusetts jails. One jail, in particular, was proud to have been the first in the country to offer this medical treatment to people who are incarcerated. Additionally, participants noted improved intake procedures, indicating an existing culture of reform and a drive to enhance carceral healthcare. The shared commitment among participants to improve carceral resources and conditions serves as a significant facilitator for the implementation of ASPs.

Theme 6: Opportunities for education about ASP and AMR

People who were incarcerated emphasized the need for increased education about AMR, with one participant stating, “Educate more. Educate the nurses in the prisons and the doctors in the prisons. You know what I’m saying? Explain to the inmates too. They all have to know about what’s going on with this [ASP and AMR]. What the antibiotics are for or what they do or how they prescribed.” Another participant who was also incarcerated, stressed the importance of raising awareness, noting, “We need more awareness. Like I barely know much. I know a little bit. I scratched the surface on that…What’s getting us to the point where we’re using so much antibiotics?” People who were incarcerated had no preference of who would provide this information, acknowledging that any increased interaction with medical staff and clinicians would open a space for greater learning opportunities.

A carceral clinician discussed their efforts to provide communicable diseases training for all staff, highlighting the importance of understanding antibiotics, the difference between viral and bacterial infections, and the emergence of superbugs like MRSA. They remarked, “It’s interesting to see how many people don’t know the reason for that [drug-resistant bacteria] …” Regarding awareness of AMR, one carceral clinician acknowledged, “I think we are very aware that there's a lot of antibiotic resistance,” while another carceral clinician expressed less concern, stating, “I don't think we really have any concerns about [AMR].”

Regarding the discussion among clinicians in the jail, a carceral administrator noted, “I’ve never heard them [clinicians] speak about it. I’ve heard them speak about other opinions on medications that we’ve prescribed here, but I’ve never once heard anybody ever say anything about antibiotics.”

Theme 7: The development of systems, policies, and regulations to improve antibiotic prescribing

When discussing avenues to enhance antibiotic prescribing in carceral settings, a person who was incarcerated emphasized the involvement of the medical industry, stating, “The medical industry [needs to be involved]. I mean, I’m not so sure the government needs to step in and create hard, fast regulations, but certainly the medical industry and the licensing bodies could insist that that education be provided and that that information be disseminated right on down the chain to the people who are finally using them.”

A carceral clinician suggested increased oversight through prescription monitoring, proposing, “…[Having] somebody who has the time to go into EMR [electronic medical records], and look at [prescribing] …I think you would just say, ‘Okay, in the last three months, [look] how often penicillin was prescribed, how often sulfa was prescribed and for what.’ And you can kind of look at the chart and see why it was used and how long it was used…I don’t think you’d have to have that the long term. It would just be something you could do and use it as a teaching tool, and that would be specific for that physician and the mid-levels [NPs and PAs] at that site. Because if you go somewhere else, they may have a whole different way of doing it.’” Another carceral clinician proposed incorporating ASP into electronic medical records, “If we can institute [ASP] into an electronic medical record, that’s smart because we have a medical record that is very archaic…ultimately we have so much time in a day and we wanna make sure that we prioritize…”.

Carceral and community clinicians advocated for the involvement of an infectious diseases (ID) physician in antibiotic tracking and oversight. An expert in carceral healthcare who worked outside of Massachusetts said, “If there is a requirement for antibiotic stewardship to get [American Correctional Association (ACA) or National Commission on Correctional Health Care (NCCHC)] accreditation, that would definitely make jails and prisons jump to do it.” A carceral clinician recommended scheduling sessions with an ID physician to discuss antibiotic prescribing and implementing policies promptly indicating that, “Let’s say [an ID physician] plans to come on Monday during the lunch hour to talk to us about antibiotic prescribing. And then, we come up at that time for one policy that would make sense to implement right away.” Moreover, a community clinician highlighted the differences in healthcare system funding between jails/prisons and the community, suggesting that financial incentives for ASP aligned more effectively in carceral settings while also acknowledging how that might appear to the incarcerated patient. They speculated, “To restrict certain antibiotics might help with the budget, as well. I can also imagine that that people who are incarcerated might feel skeptical of restricting antibiotics because they probably are already feeling like they’re not getting the best medical care.”

Using robust research methods and the engagement of participants across the spectrum of criminal-legal settings, our research adds context to why carceral settings have largely been absent from research and clinical work done on the implementation of ASPs to improve healthcare. Although antimicrobial stewardship’s necessity as a critical aspect of high-quality acute healthcare seems obvious to many, when ASP champions first implemented programming in hospitals, barriers emerged that were similar to those identified in this study. Some of the first qualitative studies done in non-carceral settings aimed at contextualizing barriers to implementation found that prescribing clinicians feared that ASPs were overly restrictive and impinge on decision-making autonomy [ 40 , 41 ], a barrier that continues even in the most recently published qualitative work [ 42 ]. Similarly, clinicians in this study expressed concerns about antibiotics being scrutinized or being restricted to specific treatment algorithms. The fact that this barrier has been largely overcome in non-carceral settings suggests it is surmountable in carceral settings as well. Interestingly, it was clear from several interactions that the clinicians themselves were aware that the current antibiotic prescribing practices were outdated.

A recent meta-analysis of influential factors in antibiotics prescribing found that the development of ASP programs should ideally be done through co-design to ensure all stakeholders’ voices are heard [ 43 ]. The development of ASP programs for jails and prisons is necessary, but the specifics of any program will need to be designed with the input of prescribing clinicians and imposed with sufficient planning. As evidenced from previous experiences in other settings, early engagement of those who make administrative and financial decisions is critical to secure their support. They must be made aware of the cost savings and value added [ 44 ]. In any intervention, especially within carceral settings, champions are critical to motivate change, encourage the process of adaptation, and ensure that a diverse group of voices are represented in the process of implementation. Ideally, champions would be medical staff embedded in the jail healthcare system, and the staff would have protected time to develop and oversee an ASP program. In several healthcare settings, nurses and pharmacists have been the most effective champions of antimicrobial stewardship [ 45 , 46 ]. The current healthcare framework within carceral settings predominantly relies on nursing professionals. Nurse-led quality healthcare initiatives in prisons and jails have been successful [ 47 , 48 , 49 ]. For the implementation of new programming in carceral settings, special attention is needed to address complex organizational and inter-agency dynamics [ 50 ]. Nurses in jails will make excellent champions because they work with the carceral staff and the medical staff.

It is widely accepted that the most effective interventions to decrease antibiotics should involve the use of multiple components [ 51 ]. The published work from the Federal Bureau of Prisons (BOP) both from in 2017 described how a hybrid system of education, closed formulary, clinical practice guidelines, and an antimicrobial stewardship team led by pharmacists to effectively decrease antibiotic prescription recipients from 829/1000 people who were incarcerated in 2010 to 625/1000 people who were incarcerated in 2015 [ 21 ]. Then, in 2019, the BOP successfully employed a pharmacist-driven audit and feedback approach which reduced the number of fluoroquinolone prescriptions [ 33 ]. In our interviews, many participants suggested strengthening the role of an ID specialist or pharmacist within the jails to support gathering of ASP metrics such as average length of antibiotic course, use of broad antibiotics, or use of antibiotics for likely viral infections. Several carceral systems purchase medications through large distribution centers, pharmacists could be trained to review and approve orders as a form of auditing and feedback and use the data as benchmarking metrics. Increased use of pharmacy residents and students in carceral settings are one way to overcome the potential financial barrier [ 52 ]. Telehealth pharmacy oversight is another potential avenue for optimizing antibiotic prescribing [ 53 ].

Consistent with other work done in resource-limited settings, participants described competing needs for time and money, thus impeding ASP prioritization. ASP cost-effectiveness has been demonstrated across several healthcare settings, yet not in jails or prisons. Confirming the cost-savings and continued high-quality care after implementation of ASP programs in carceral settings is a necessary research study, although the complexities of healthcare financing in jails and prisons may present a challenge. While antibiotics themselves are usually inexpensive, the staffing required to culture patient samples and administer directly observed antibiotic therapy multiple times a day can pose a significant financial strain on jails and prisons’ healthcare systems.

Notably, included in our research are those who were currently incarcerated. Most participants who were incarcerated expressed comfort in being able to access antibiotics. We highlighted several concerns from patients about MRSA, and one quote in which someone with a cut felt better being on prophylactic antibiotics. The importance of educating on the dangers of inappropriate antibiotic use cannot be overstated [ 54 ]. Although some people who were incarcerated were aware of the risks with antibiotic use, they were in the minority. Even with multiple carceral education initiatives, including those designed to mitigate MRSA outbreaks in jails [ 55 , 56 , 57 ], there have been no documented programs that specifically discuss the risks of AMR or the dangers associated with antibiotics. As a follow-up to this research, we hope to collaborate with leaders in health literacy and antimicrobial resistance to develop tools aimed at educating people who are incarcerated. To further this success, educational materials must be made available in other languages and at different reading levels to ensure that all individuals have equitable access to improve their AMR awareness and knowledge. Our team’s previous collaboration with local pastors and medical students to facilitate increased COVID-19 vaccine uptake in Massachusetts jails [ 58 ] demonstrates that bringing in outside representatives to discuss antibiotic harms may be a useful strategy.

Benchmarking is a system of comparing healthcare process measures that has been effective in curbing unnecessary antibiotic prescriptions [ 59 ]. Currently, benchmarking antibiotic use in jails or prisons is not required by the CDC or other national correctional healthcare credentialing agencies. However, we believe that making antibiotic tracking mandatory that ASP efforts could be bolstered. Clinical decision tools embedded in EMR have emerged as an effective strategy for outpatient monitoring of antibiotics [ 52 ]. Interestingly, EMR did not emerge in our interviews as either a barrier or facilitator to antimicrobial stewardship. An interesting aspect of jail healthcare is that even in abutting counties, the jails may use totally different EMR systems. For example, in Massachusetts jails, we are aware of at least five different EMRs. Therefore, an integrated EMR across state-specific jails would support the development of benchmarking systems.

This study was subject to several important limitations. Perspectives from people working in Massachusetts may differ from geographic regions of the U.S. Due to limitations in study resources, we were not able to interview people who were incarcerated who spoke a language other than Spanish or English, thus limiting potential perspectives we heard. In comparison to people who were incarcerated, we interviewed a relatively small size of the carceral administrators and community clinician participants. Therefore, when reporting demographic information, researchers had to group responses to protect confidentiality. The potential influence of social desirability bias may have affected our findings, as participants might have felt inclined to adjust their responses to align with support for ASPs. However, it is noteworthy that a considerable number of interviewees either lacked awareness of antimicrobial resistance or deemed it unimportant. This suggests that we likely managed to capture a diverse range of perspectives on the matter.

Despite these limitations, this is the first study to our knowledge that engaged stakeholders from a broad spectrum of lived experience across the spectrum of criminal-legal sector to be participants in research about antibiotic resistance. There are recent initiatives in carceral healthcare to encourage quality improvement projects, and we encourage readers to consider partnership on antibiotic-related projects with partners working in jails and prisons. Although barriers emerged from our discussions with participants, we also identified several facilitators that, if leveraged with support of champions, can positively impact and improve systems of antimicrobial prescribing and counter the threat of antimicrobial resistance.

The benefits of optimizing antibiotic prescribing are clear, but most carceral settings do not have routine systems of antibiotic use evaluation. We identified barriers and facilitators that can provide a scaffold for next steps to asses and improve antibiotic prescribing in jails. We hope this research encourages other people working in carceral settings to ask questions about the gap between community and carceral healthcare and develop systems to equitable care for people incarcerated in jails and prisons.

Availability of data and materials

The codebook generated for this study’s analysis is included in this published article (Additional File 2 ). The transcripts generated from our interviews during the current study are not publicly available to maintain privacy of the participants. They may be made available from the corresponding author at [email protected] on reasonable request.

Abbreviations

• Antimicrobial resistance
• Antimicrobial stewardship program

United States

U.S. Centers for Disease Control and Prevention

Nurse Practitioner

Physician Associate

Doctors of Medicine

Doctors of Osteopathic Medicine

Methicillin-resistant Staphylococcus aureus

Massachusetts

Registered Nurse

Licensed Practical Nurse

Theoretical Domains Framework

Consolidated Framework for Implementation Research

Inductive Thematic Analysis

Federal Bureau of Prisons

Electronic medical record

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Acknowledgements

We would like to thank those who are incarcerated, carceral clinicians, correctional officers, administrative staff, and participants from the community for their collaboration.

This study is supported by the Tufts Springboard Grant, Stuart B. Levy Center for Integrated Management of Antimicrobial Resistance (CIMAR) at Tufts University.

Author information

Rebecca A. Tenner and Emily D. Grussing are joint first authors.

Authors and Affiliations

Division of Geographic Medicine and Infectious Disease, Department of Medicine, Tufts Medical Center, Boston, MA, USA

Rebecca A. Tenner, Emily D. Grussing, David Manning, Yvane Ngassa, Gabriela Andujar Vazquez, Shira Doron, Maureen Campion & Alysse G. Wurcel

School of Arts and Sciences, Tufts University, Medford, MA, USA

Rebecca A. Tenner & David Manning

Tufts University School of Medicine, Boston, MA, USA

Emily D. Grussing, Jacob J. van den Berg, Gabriela Andujar Vazquez, Shira Doron & Alysse G. Wurcel

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Contributions

R.A.T. and E.D.G. are joint first authors and co-wrote the main manuscript text, E.D.G. prepared Table 1, R.A.T. prepared Fig. 1 and Table 2, R.A.T., E.D.G., and Y.N. conducted interviews, R.A.T., E.D.G., Y.N., A.G.W. and D.M analyzed interviews, All authors read and approved the final manuscript.

Corresponding author

Correspondence to Rebecca A. Tenner .

Ethics declarations

Ethics approval and consent to participate.

This study was approved by the Tufts University Health Sciences Institutional Review Board (STUDY:00002828: Qualitative Methods to Improve ASP in Carceral Settings). All participants were required to obtain informed consent before participating in any study-related interviews. The study fulfills the principles of the Helsinki Declaration, ensuring respect to all participants and adequate training of all researchers.

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Not applicable.

Competing interests

AGW works as an Infectious Diseases Liaison to the Massachusetts Sheriffs Association The remaining authors declare no competing interests.

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Supplementary Information

44263_2024_90_moesm1_esm.pdf.

Supplementary Material 1. A collection of all interview guides used to guide conversations with each stakeholder group. Interviews are collated into one file

44263_2024_90_MOESM2_ESM.xlsx

Supplementary Material 2. The initial codebook developed based on 10 interview guides. Guides were randomly selected to represent each participant group and subgroup

Supplementary Material 3. Reflects the consolidated criteria for reporting qualitative research (COREQ) checklist

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Tenner, R.A., Grussing, E.D., Manning, D. et al. “It’s easier to take a pill than fix a problem:” qualitative analysis of barriers and facilitators to antimicrobial stewardship program implementation in carceral settings. BMC Global Public Health 2 , 59 (2024). https://doi.org/10.1186/s44263-024-00090-1

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Important aspects of experiences from patients and parents related to medications in Child and Adolescents Mental Health Services (CAMHS) - a qualitative study

• Asbjørn Kulseng Steiro 1 &
• Hilde Hestad Iversen 2  

BMC Psychology volume  12 , Article number:  458 ( 2024 ) Cite this article

Metrics details

Patient-reported experiences are a key source of information on quality in mental health care. Most patient experience surveys are limited to assessments from adults, including those conducted by parents or proxies on behalf of others. The aim of this study was to produce findings to inform development of modules on patient and parent experiences with medication in outpatient CAMHS in Norway, for use in previously validated instruments applied in national surveys.

Patients and methods

We developed survey questions based on a systematic literature review, expert-group consultations, interviews with adolescents and parents, and pretesting of the modules in a pilot study. This study included adolescents aged 12–17 years and parents with experiences from outpatient CAMHS and we present findings from semi-structured interviews.

Adolescents with ADHD emphasized the following aspects as important concerning medication use in CAMHS: positive effects of medication like better function and concentration in school and change of behaviour. They also stressed the importance of side effects such as eating problems, nausea, loss of appetite, insomnia, and changes in thoughts and feelings. In addition, adolescents highlighted the significance of aspects as support in daily routines for taking medications, while parents highlighted needs for a professional follow-up care. Parents emphasized aspects regarding their children’s medication included both positive effects and change in behaviour, as well as their identification of negative side effects.

Our findings from semi-structured interviews identified important aspects reported by both patients and parents on functions, side effects and follow-up care related to medication. The results indicated that both groups emphasized corresponding aspects of what was important regarding medication. However, when it came to follow-up care, the two groups highlighted distinct aspects, indicating differing priorities or concerns in this area.

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Introduction

Patient-reported experiences are a core part of quality in healthcare. In Norway, patient-reported experiences are included in the national quality indicator system. The Norwegian Institute of Public Health (NIPH) along with its predecessors, has developed patient experience surveys and instruments for measuring experiences of various patient groups using standardized methods. These methods include literature reviews, expert group discussions, qualitative and cognitive interviews with patients, and pilot testing of questionnaires [ 1 , 2 , 3 , 4 ].

In the Child and Adolescents Mental Health Services (CAMHS) patients receive specialist consultations for the assessment and treatment of emotional, behavioural, or mental health difficulties. This includes initiation and adjustment of medication. NIPH has previously developed questionnaires to assess the experiences of both parents and patients with CAMHS. Recently, the Norwegian Directorate of Health commissioned that the CAMHS surveys should also include questions about experiences with the use of medication. These modules are planned to be integrated into previously validated questionnaires for use in national surveys in Norway [ 5 , 6 , 7 ].

To our knowledge, there are few national surveys on the experiences of adolescents and parents with medications in CAMHS. We conducted a systematic literature search to identify studies related to experiences with the use of medications in the mental health care services. We found a substantial body of research on adult’s experiences on medications, surveys, and instrument validations [ 8 , 9 , 10 , 11 , 12 ]. However, validated instruments were assessed, but not included in our survey questions [ 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ].

Research have shown that the medical treatment of mental health problems among young people is a subject of controversy, involving concerns about increased use, side effects, long-term treatment and the off-label use of medications primarily tested on adults [ 24 ]. Additionally, we found little published evidence regarding which aspects are important to adolescents. Therefore, there is a need to fill this knowledge gap. Research indicates a complex experience that encompassed both benefits and side effects reported by the participants [ 24 , 25 , 26 , 27 , 28 ]. Barriers to medication use included lack of information and autonomy for adolescents, while support from family and friends were facilitators for helping find the right medication and with least possible side effects [ 29 , 30 , 31 ].

Young people who were committed to taking medications had experiences that included perceiving medications as a desirable choice for treatment, finding medications helpful, and having no concern about side effects [ 32 ]. In addition, young people with less commitment to medication had experience that included feelings of being coerced into taking medications and concerns about side effects, perceived stigma associated with it, and worries about short and long-terms side effects [ 32 ].

Studies have identified important aspects of experiences with medications from the perspective of patients related to psychological reactions, adverse outcomes, adherence, and follow-up care, and how these aspects may interact. Researchers explored changes in mood, after experiencing adverse outcomes with medication [ 17 , 28 ]. In a study of prescription stimulant medication, which tracked experience from childhood to adolescents: participants reported a history of taking medication, adherence to medications. In other studies researchers have explored aspects of recovery, adherence, and acceptance to transition to follow-up care [ 14 , 33 , 34 , 35 ]. This involved a trade-off that encompassed perceived effects, side effects and benefits of the prescribed medications [ 26 ]. This multidimensional experience of medications profoundly shapes patients’ lives.

Researchers have examined how adolescents experience the effects of psychotropic drugs and how access to professional support and follow-up care impact their social lives [ 24 , 30 ]. These studies have identified facilitators for accessibility and acceptability, such as psychiatric openness to client’s perspective, availability of services outside office hours, and support from mental health care providers [ 29 , 36 ].

We found a limited number of studies that examine which aspects of the experience are important from both perspective of patients and parents on medications [ 37 , 38 , 39 ]. Patient perspectives offers qualitative insights into which aspects are perceived as significant and can provide valuable insights into how they perceive medication use. The aim of this study was to generate and validate findings to inform the development of survey questions modules focusing on the experiences of patients aged 12–15 years and parent regarding medication use in outpatient CAMHS.

NIPH launched the development of two modules of survey questions related to experiences with medication in CAMHS. We drafted these modules after reviewing free-text comments from a national survey among parents in CAMHS 2018 [ 40 ], a literature review, and meetings with a reference group. Separate drafts were created for adolescents’ and their parents. The semi-structured interviews, conducted with both patients and parents, were divided into two parts. The first part involved a pre-determined set of open questions, allowing the interviewer to follow-up on themes or responses. The second part, a cognitive interview, enabled informants to vocalize their thoughts regarding survey questions and response categories (see Tables  1 and 2 ). We used ChatGPT 3.0 for feedback on style, spelling and grammar.

Participants

The participants included adolescents with Attention-deficit/hyperactivity disorder (ADHD) and parents with experiences from different outpatient clinics in CAMHS. We opted to include approximately 12 to 15 participants in each group for the interviews, following the recommendations of previous studies. The inclusion criteria for adolescents were prior experiences with medication as part of their treatment in CAMHS and sampling of age, gender, and duration of treatment. By including participants with diverse backgrounds, we aimed to better represent the broader population and ensure that our findings are more valid. All participants received written and verbal information about voluntarily participation. Parent`s provided consent for their children participation in the interviews.

Data collection

Data were collected through semi-structured interviews conducted between June and August 2021. The interview-guides (see Additional file 1 and 2 ) were pre-tested, and these interviews are not included in our analysis of data. We pilot-tested the procedure for conducting digital interviews [ 41 ].

Due to the constraints posed by Covid-19, along with limited time and resources, conducting physical interviews at outpatient clinics was not feasible. We recruited participants from voluntarily organizations, specifically ADHD Norway and Mental Health Carers Norway (LPP). Our sample consisted therefore of adolescent with ADHD, which reflect the specific focus of our study. Our digital interviewing approach was restricted to no recording possibilities. Consequently, our data primarily relied on the researchers’ field notes rather than full-transcribed interviews. Field notes were made during the interviews, as small, keyword-based notes. More comprehensive notes were written immediately after interviews [ 42 , 43 ].

Two researchers conducted the interviews, with open-ended questions to explore participants experiences regarding the use of medications: “Can you tell us about what it is like for you to take medications?” We wanted to identify what informants immediately emphasized, as important aspects and if these correspond with our survey questions. We explored both positive and negative experiences with taking medications. We asked how participants had experienced consultations from the CAMHS regarding medications. The cognitive interviews aimed to explore the informants’ assessments of the survey questions. During the cognitive interviews, we presented the draft questionnaire and solicited feedback regarding their perceptions of survey questions and response categories (results not presented here).

Data analysis

We conducted data analysis using a qualitative content analysis approach [ 44 , 45 , 46 ]. Our data coding process followed several stages: (1) Decontextualization (2) Recontextualization, (3) Categorization and (4) Compilation [ 45 ]. Two researchers independently coded the data in NVivo. The content analysis involved developing a coding system with main categories and subcategories. We used Graneheim and Lundman`s method, focusing on the main stages of their approach to guide our analysis. However, we did not implement every stage in our study. Our intention was to use their framework as a general guide rather than strictly following the method in its entirety [ 46 ]. Initially, interviews were thoroughly examined for condensed themes, important aspects, and manifest and latent content. This process helped us to summarize the critical aspects that were most relevant for our informants. Codes were compared and similarities and differences were identified and analysed. Preliminary codes were discussed by the two researchers conducting the interviews until consensus was reached.

Our analysis followed these steps: (1) Descriptions of adolescents’ and parents’ experiences (2) Identifying main categories and subcategories (3) Exploring similarities and differences between the two groups. (4) Developing new concepts that emerged from our analysis of the datasets. We will now describe the results from the interviews.

We conducted interviews with 13 patients who had experiences with the CAMHS. Most of the patients were between 12 and 16 years. Among the participants, there were six girls and seven boys. Their duration of medication use varied: eight had been treated for 1–2 years, four for 3–5 years, and one for more than 6 years. Most of our participants were adolescents with ADHD. They reported a range of medications use as stimulants, anxiolytics, hypnotics, antidepressants, mood stabilisers, antipsychotics and alimemazine (for sleep disturbance).

Additionally, we conducted interviews with ten mothers and only two fathers.

Adolescents experience

Adolescents with ADHD experienced positive effects of medication, such as improved function, behaviour changes, and better concentration in school. However, they also experienced side effects such as eating problems, nausea, insomnia, and changes in thoughts and feelings. Many adolescents with ADHD reported difficulties in maintaining their medication routines and expressed a need for assistance in remembering to take medications. The main themes emerging from our data analysis were aspects related to medication impacts on functions and behaviour, perceived side effects, and adolescents’ challenges with the follow-up of their daily medication routine (see Table  3 ). We will now describe these themes in more detail.

Most of the adolescents with ADHD reported significant change and improvement in functions. They reported better coping with everyday life, enhanced concentration in school and improved self-control. Some of the effects of the medication were described as feeling more relaxed, less stressed, and less irritable, aggressive, or restless. A few even reported receiving more attention from friends due to these changes. Some adolescents used words like “feeling more normal”, but a few reported a sense of losing their personality, stating: “I am more myself without medication”.

Some patients reported positive experience such as improved concentration, presence, self-control, a sense of calmness, and perceived effectiveness on educational achievement. They felt more engaged in school and when spending time with friends. However, some individuals mentioned changes in their thoughts and feeling, such as feeling “flat”, or “numb”, being slower to respond to others, and this reduced motivation to continue taking medications. Many of the adolescents had mixed experiences when it came to finding the right medications, including type of medication and appropriate dosage. Other had to make medication changes due to lack of effect, side-effects, and no improvement in symptoms.

Some of the patients expressed a desire for better information about how medications work and their potential side-effects. Adolescents expressed significant concerns about the adverse side effects of medical treatment. The most mentioned side effects included loss of appetite, nausea, insomnia, and a notable flattening of mood. Additionally, participants reported side effects such as stomach pain, feelings of feverishness, fatigue, tics, breathing problems, depression, and even hallucinations. Adolescents with ADHD experienced a range of symptoms, including stress, changes in energy levels, tics, breathing problems, restlessness, diffuse pain, and alterations in their mood (feelings and thoughts). Furthermore, participants discussed the consequences stemming from these side effects. For instance, the loss of appetite raises concerns about weight loss or an inability to gain weight. Some individuals described the balance they had to maintain between the treatment’s benefits and its substantial side effects.

While most of adolescents were generally satisfied with the counselling and information, they received from the CAMHS, there was a recognized need for ongoing care and support from mental health services during the transition from CAMHs to general practitioners (GPs). Some adolescents highlighted the challenges they faced in adhering to prescribed medications and follow-up care; their practical needs for help emphasized the importance of reminders. Others reported the need for follow-up care by GPs, and guidance on dosage and time-schedules as important aspects.

Some stated that their need for counselling and help decreased after receiving a diagnosis and being prescribed medications from CAMHS. Additionally, a few adolescents explained why they refused to take medications, citing reasons such as dislike for the medications, feeling better without them, psychological reactions (adverse events), changes in their personality, difficulties in stabilizing their disorders, sleep restrictions, fears of relapse, and self-harm concerns.

Parents experience

Parents had both positive and negative experience with their children’s medication use. The main theme that emerged included behaviour and functioning changes, and experiences with side effects. Parents also shared their views on the professional support and follow-up care provided by CAMHS, especially the transition from CAMHs to the GPs. We will now describe these themes in more detail (see Table  4 ).

The parents reported both positive and negative experiences regarding the effects of medications on their children’s functioning in school, as well as within the family and with friends. They also discussed their child’s ability to cope with the medication’s effects during the day, which could be disrupted with other medications given for sleep disturbance.

Furthermore, parents described their adolescent`s experiences with the CAMHS in general terms, and especially consultations which included clinical interviews, investigations, mapping, assessment, and diagnosis of mental health conditions. They also discussed experiences with challenges their child faced in managing both getting diagnosis and trying out medications. Additionally, they expressed their experiences with finding the right medication, the prescriptions of medications following diagnostics, the trial-and-error method with various types of medications, and how adolescents responded to medication in the short- and long-term.

Parents reported side effects experienced by their children, including decreased appetite, as well as perceived psychological reactions and changes in mood, thoughts and emotions attributed to specific medication. They expressed a need for more information from CAMHS about the possibility of side effects of medications. Experiences varied, ranging from heavy side effects to medications not working at all.

Parents suggested a yearly follow-up by a child psychiatrist, including updated assessment of medications (medical check-ups) and specialist consultations regarding prescribed medications. Others expressed a desire for more extended follow-up care within CAMHS, while some appreciated CAMHS’ transparency in acknowledging the trial-and-error method of finding the right medication. Additionally, some parents felt it was necessary to get a new psychiatric assessment and diagnosis of mental health conditions, especially due to changes in mood or psychological development during adolescence. Furthermore, parents also highlighted the need for a seamless transition from CAMHS to GPs and clarified the responsibility of follow-up of prescribed medications. One important aspect was clarifying responsibilities for medication follow-up and access to other health services.

One significant area of divergence pertained to parents’ apprehension regarding the long-term implications of medication and the necessity for ongoing care. They expressed concerns about the lasting effects on their adolescents and advocated for improved access to professional follow-up care. Conversely, adolescents were more concerned about the practical aspects of medication management. They were interested in strategies for adhering to medication routines, establishing proper time schedules, and receiving reminders. For them, long-term follow-up care was less of an important aspect of medication use.

The aim of this study was to explore which aspects of experiences are important from the perspective of patient’s and parents related to medication use in CAMHS. We identified important aspects reported by both groups related to functions, side effects and follow-up care, and we will now discuss our findings, and how these aspects are important in survey questions and could be applied in national surveys.

The trade-off are comparable with findings from other studies that have found patients weighting positive effects, such as better functions, symptoms management and health improvement, against negative side effects, lack of perceived effects, and personal aspects related to medications [ 26 , 38 ]. As a result, some of them refused to take the prescribed medications, viewing the side effects as a too high a price to pay. “Is it worth it?” reflects the process of trading off the benefits of the prescribed medications against the heavy burden of side effects.

In McMillan’s (2020) narrative review of young people’s experiences with mental health medications, a wide range of both negative and positive encounters were reported, which had the potential to influence medication acceptance. Challenges included a lack of autonomy, and the influence of family members, alongside considerations of medication benefit and side effects. Additionally, factors such as routines, medication adherence [ 47 , 48 , 49 ], perceived burden and responsibility, as well as the use of non-medication therapies, played significant roles. Our study has found similar findings.

Why adolescents refuse to take their medications may be related to a complex interplay of different social factors, including family dynamics [ 50 ], peer influences, and perspectives on health care policies. Our current research has emphasized patients views of significant impact of social life family, parents, and friends on how adolescents perceive changes in mood and behaviour, as well as how medications impact daily mood fluctuations, symptoms, mental health conditions and well-being.

The utilization of a triangulation in qualitative methods with data from two groups, offered a more comprehensive understanding [ 25 , 51 ]. Parents played a crucial role in validating their adolescents’ experiences, shedding light on aspects including functionality, benefits, and potential side effects, which were confirmed by them.

Strengths and limitations

A potential source of bias in this study was related to our participants and selection biases. Most of the participants were recruited through a national organisation for ADHD-patients. These participants were assumed to have a higher rate of medication use compared to young people with mental illness in general [ 52 ].To reduce bias in our sample, we used purposive sampling methods, including factors like age, gender, and duration of treatment. Another limitation was the overrepresentation of mothers among the parents, while fathers were underrepresented.

One methodological limitation of our digital interviewing approach was the absence of recording possibilities. Consequently, our data primarily relied on the researchers’ field notes rather than full-transcribed interviews. This limitation introduced possibility of biases, and information loss.

A strength of our study was qualitative interviews conducted with both adolescents and parents. This approach provided a more comprehensive perspective, covering a wide range of aspects such as their views on medication benefits, functions, side-effects, follow-up care and strategies for coping with medication routines. Furthermore, these perspectives were enriched by the exploration of differences and similarities between both groups. Parents played a crucial role in validating adolescents’ experiences and contextualizing them within a broader scope, including individual relationships and the perceived impact on family, school, and health service’s needs. Additionally, adolescents reported and validated the significance of parent’s experiences with medication, underscoring the importance of improved communication regarding information about medications and their potential side effects.

The aim of this study was to generate and validate findings to inform the development of modules on patients aged 12–15 years and parent experiences regarding medication use, and we incorporated survey questions about information about medications, side-effects, and follow-up care, which was important aspects reported by both patients and parents.

Interestingly, there were only minor differences between the aspects reported by parents and adolescents. Notably, parents emphasized the importance of follow-up care after assessment. The results from this current study hold implications for comprehending adolescents’ perceptions of medication use, with important aspects, but also validating important themes for survey questions.

Furthermore, more research is essential to delve into how adolescents’ ambivalence and mixed thoughts and feelings about medications use influence their behaviour. Such knowledge can prove crucial in understanding how adolescents approach adherence to and compliance with treatment.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to protection of personal data.

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Acknowledgements

The authors want to thank the adolescents and parents who participated and shared their experience. We want to thank Olaf Holmboe for conducting interviews, data collection, coding of data and preliminary analysis.

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. This study was supported by the Norwegian Health Directorate and the Norwegian Institute of Public Health.

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Asbjørn Kulseng Steiro

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Investigation and project administration: AS. Conceptualization: All authors. Data analysis: AS, Methodology: All authors. Writing - original draft: AS and HHI. Writing - review & editing: AS and HHI.

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Correspondence to Asbjørn Kulseng Steiro .

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The authors declare that there is no conflict of interest in this work. We used OpenAI’s ChatGPT, a large language model, to assist in editing drafts. ChatGPT’s involved primarily feedback on text style, spelling and grammar. Furthermore, the responses were carefully reviewed, and critically assessed by the researchers to ensure accuracy and relevance. The inclusion of AI-generated feedback was a complement to, rather than a replacement for, traditional research methodologies. We report according to the 32-item checklist of consolidated criteria for reporting qualitative studies (COREQ), see Additional File 3 .

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Steiro, A.K., Iversen, H.H. Important aspects of experiences from patients and parents related to medications in Child and Adolescents Mental Health Services (CAMHS) - a qualitative study. BMC Psychol 12 , 458 (2024). https://doi.org/10.1186/s40359-024-01962-9

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DOI : https://doi.org/10.1186/s40359-024-01962-9

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Qualitative Research on Mindfulness Interventions for Staff Nurses

A review of the literature.

Lemke, Johanna MA, BSN, RN, NEA-BC; Evanson, Tracy A. PhD, RN, PHNA-BC

Author Affiliations: Regional Director of Nursing (Lemke), Advocate Health, Charlotte, North Carolina; Professor (Dr Evanson), University of North Dakota, Grand Forks.

The authors declare no conflicts of interest.

Correspondence: Lemke, Northern Plains Center for Behavioral Research, Room 380H, Stop 9025, College of Nursing & Professional Disciplines, University of North Dakota, Grand Forks, ND 58202 ( [email protected] ).

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Complexity, workforce shortages, and escalating stressors in the healthcare setting have led to increased turnover and burnout of nursing staff. Mindfulness has been demonstrated to offer a variety of benefits to nurses. This article summarizes the qualitative research on the experience of mindfulness training and practice with the goal of providing evidence-based recommendations for nurse leaders on how to design and implement effective and well-adopted mindfulness programs.

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Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis

• Gill Thomson 1 ,
• Lara McNally 1 &
• Rebecca Nowland 1  

BMC Pregnancy and Childbirth volume  24 , Article number:  569 ( 2024 ) Cite this article

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Poor parental mental health in the perinatal period has detrimental impacts on the lives and relationships of parents and their babies. Parents whose babies are born premature and/or sick and require neonatal care or those who experience perinatal loss are at increased risk of adverse mental health outcomes. In 2021 a North-West charity received funding to offer psychological support to service users of infants admitted to neonatal care or those who had experienced perinatal loss, named the Family Well-being Service (FWS). The FWS offered three different types of support – ad hoc support at the neonatal units or specialist clinics; one-to-one person-centred therapy; or group counselling. Here we report the qualitative findings from an independent evaluation of the FWS.

Thirty-seven interviews took place online or over the phone with 16 service users (of whom two took part in a follow-up interview), eight FWS providers and 11 healthcare professionals. Interviews were coded and analysed using thematic analysis.

The analysis revealed two themes. ‘Creating time and space for support’ detailed the informational, contextual, and relational basis of the service. This theme describes the importance of tailoring communications and having a flexible and proactive approach to service user engagement. Service users valued being listened to without judgement and having the space to discuss their own needs with a therapist who was independent of healthcare. Communication, access, and service delivery barriers are also highlighted. The second theme - ‘making a difference’ - describes the cognitive, emotional, and interpersonal benefits for service users. These included service users being provided with tools for positive coping, and how the support had led to enhanced well-being, improved relationships, and confidence in returning to work.

The findings complement and extend the existing literature by offering new insights into therapeutic support for service users experiencing adverse neonatal experiences or perinatal loss. Key mechanisms of effective support, irrespective of whether it is provided on a one-to-one or group basis were identified. These mechanisms include clear information, flexibility (in access or delivery), being independent of statutory provision, focused on individual needs, active listening, the use of therapeutic tools, and positive relationships with the therapist. Further opportunities to engage with those less willing to take up mental health support should be developed.

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Introduction

Perinatal mental health refers to mental health during pregnancy or within the first year after having a baby [ 1 ]. It is estimated that up to 20% of women experience poor mental health such as antenatal or postnatal depression, anxiety, post-traumatic stress, or other complications such as postpartum psychosis [ 1 ]. Two key areas that can impact perinatal mental health relate to having a baby admitted to neonatal care, or experiencing a perinatal loss (such as miscarriage, stillbirth, or early neonatal death). Both situations induce similar responses but for different reasons. The need to promote positive parental health is well-reported due to the links between poor mental health and parent relationships [ 2 ] and poorer infant and child social, emotional, behavioural, and cognitive developmental outcomes [ 3 , 4 , 5 ].

Having a baby admitted to neonatal care can be a devastating experience for parents [ 6 ] due to experiencing a traumatic birth, concerns over infant viability and the unfamiliar and technological nature of the neonatal environment [ 7 ]. A recent systematic review and meta-analysis to explore prevalence rates of depression and anxiety for mothers and fathers of preterm infants reported depression rates of 29.2% for mothers and 17.4% for fathers, and anxiety rates of 37.7% and 18.3% for mothers and fathers respectively [ 8 ]. Mothers of premature infants have also been found to experience higher rates of post-traumatic stress when compared to fathers [ 9 ]. Perinatal loss is also reported to have profound and lasting effects on the mental health of parents due to feelings of intense grief manifested through feelings of sadness, anger, guilt, and emptiness [ 10 , 11 , 12 ]. Individuals who have experienced perinatal loss are also at increased risk of trauma symptoms, such as flashbacks and nightmares [ 13 ] and developing, or exacerbating depression and anxiety [ 10 ]. Both having a premature and/or sick infant or a perinatal loss can induce guilt due to parents blaming themselves for their baby’s prematurity or untimely death [ 10 , 11 , 14 , 15 ]. These parents can also experience social isolation through feeling disconnected from friends and family due to a lack of understanding [ 10 , 16 ].

Interventions for perinatal mental health are crucial to ensure the well-being of the parents and infants. Within neonatal care, interventions can include family-centred care [ 17 , 18 ], skin-to-skin [ 19 ] and education programmes [ 20 ]. An integrative review focused on interventions designed to improve the psychosocial needs of parents of premature and/or sick infants identified 36 different studies/interventions including creative activities, peer support, relaxation/mindfulness, spiritual/religious and psychotherapeutic support [ 7 ]. This review found varying results with a general lack of effectiveness trials and wide heterogeneity within similar interventions; mechanisms of self-care, relaxation and social opportunities were highlighted as important [ 7 ]. A further systematic review and meta-analysis of 17 psychosocial interventions for individuals experiencing perinatal loss found significant impacts on reducing depression, anxiety, and grief; with most interventions offering either counselling or structured debriefing sessions [ 21 ].

In 2021 a North-West charity received government funding to develop and evaluate a two-year (April 2021-March 2023) Family Well-being Service (FWS). This service involved three types of support. (A) Ad hoc emotion-based support provided to service users while their babies were admitted to neonatal care or attending specialist clinics following perinatal loss. (B) Person-centred one-to-one therapy (~ 10–12 weeks) delivered over the telephone or face-to-face to service users whose infants were admitted to neonatal care, had experienced perinatal loss and those attending foetal medicine clinics due to their infants experiencing complex health conditions. (C) Group support, via a 6-week face-to-face guided bereavement course designed by two of the FWS therapists for service users who had experienced perinatal loss. Group support was initially introduced as an interim measure to enable service users to receive support while they waited for one-to-one therapy. The FWS was provided to service users who received care from any of four maternity Trusts in one North-West region. Here we report some of the qualitative findings from the evaluation to highlight the experiences and impacts of the FWS on service users. This work complements existing research by offering qualitative findings of a therapeutic-based intervention for those experiencing perinatal mental health difficulties following adverse neonatal outcomes [ 22 ]. It also extends the current literature by providing insights into an ad hoc form of therapeutic support delivered during a sensitive period of infant admission.

Methodology

An exploratory descriptive approach was undertaken due to this study focusing on a new area of service delivery [ 23 ].

During the evaluation, we planned to collect demographic and outcome data from all those who received one-to-one therapy from the FWS (with this information not routinely recorded for those who received ad hoc or group-based support). The service users were asked by the FWS therapists to provide consent for data-sharing purposes. Overall, less than a third of service users who received one-to-one therapy over the evaluation period provided consent. As this meant that only a partial, and potentially unrepresentative data set was available, this information has not been reported (a full copy of the evaluation report that includes all data and outcome analyses is available from the lead author). The reason for non-consent was not recorded in case this had a negative impact on the FWS therapist-service user relationship.

As part of the evaluation, we undertook interviews with the FWS therapists who provided the therapeutic support; wider healthcare care, e.g., neonatal nurses/staff who work on the neonatal units - to capture their perceptions about the FWS being delivered at the units; and service users who had received support (ad hoc, one-to-one therapy, group-based counselling) from the FWS. In this paper, we report on insights from the qualitative data that describe the experiences and impacts of the FWS on service users.

Data collection

Data collection involved interviews with the FWS therapists, wider healthcare professionals and service users. Service users were also invited to participate in a follow-up interview ~ 6 months later to assess for longer-term impacts of the FWS and whether any additional support had been accessed. While different semi-structured interview schedules were created for the different population groups (see overview of topics for each participant group in Table  1 ), all involved exploring experiences of the FWS and recommendations for service development.

All interviews were undertaken remotely via telephone or Microsoft Teams and were video and/or audio recorded. At the start of the interview, consent statements were read out by the researcher, with participants asked to verbalise their agreement to each. The consent recording was then stored separately from the interview recording. Service users were offered a £10.00 voucher for each interview completed. All interviews were between 20 and 60 min (average of 50 min) in length and were transcribed in full for analysis purposes.

Recruitment

Recruitment of FWS therapists involved the FWS project lead sending an invitation to all appropriate staff. To recruit wider healthcare professionals, FWS therapists were asked to provide contact details of relevant healthcare professionals (those who were aware of the FWS) for the evaluation team to invite. Any service user aged 16 + years who had received support from the FWS was eligible to take part. Service users were invited (via FWS therapists) by being asked to complete an Agreement to Contact form to receive further information about the evaluation. Posters about the evaluation were also displayed in key locations (e.g., neonatal unit, location where therapy or group support was provided) for service users to contact the evaluation team directly.

On all occasions, participants received an invitation email, an information sheet, and a consent form, and asked to respond to the evaluation team within two weeks if they wished to participate (with reminders issued ~ 3/4 weeks later).

Qualitative data were analysed using a reflexive thematic approach [ 24 ]. This involved the first and second authors creating an initial coding framework using MaxQDA qualitative software. The second author then continued to use this framework to code the remaining documents with codes added, re-named, or merged as appropriate. All the authors reviewed and agreed on final analytic decisions.

Reflexivity

All authors have a psychology-related background. The lead author has over 20 years of undertaking research with perinatal populations, and the other two have been undertaking research in this area for ~ 5 years. All the authors are parents. All authors consider that emotion-based support for parents who have faced these adverse situations is crucial due to the potential for negative impacts on parents, infants, and families. The second author who was responsible for data collection and analysis had experienced neonatal care with her first child and had previously worked as a volunteer with the charity. Care was taken to ensure that this prior relationship did not overtly bias data collection, or the interpretations generated – this was achieved through working closely with the project lead (first author) to review the transcripts and when analysing the data set. As listening to others’ experiences of neonatal care could trigger personal memories, regular check-ins were provided by the project lead for reflection and sign-posting purposes.

Ethics approval for this study was received from the Health ethics committee at the University of Central Lancashire (project no: 0262). All participants received a detailed information sheet and provided informed consent. As it was recognised that the interviews could elicit upset, a distress protocol was developed. This involved advising participants (in the information sheet and verbally) that the interview would be paused should they become upset, and a decision made together about how to proceed. All service users were provided with contact details of organisations where they could seek further support as needed. All information sheets noted that confidentiality would be broken should experiences of harm (to self and others) be disclosed.

A total of 37 interviews with 35 participants were undertaken, 35 interviews were completed via Microsoft Teams and two interviews were audio-recorded telephone calls. Participants included eight FWS staff, 11 healthcare professionals and 16 service users (of whom two were interviewed twice). The demographics and characteristics of service users are displayed in Table  2 .

All service users identified as female and were aged between 25 and 40 years, with a mean age of 33. Most service users were White British or White British American ( n  = 14, 87.5%), over half were married or in a civil partnership ( n  = 11, 62.5%) and the rest were single ( n  = 6, 37.5%). The age of the service users’ youngest child ranged from 10 weeks to 4 years (with the average child age being 15 months). Reasons for referral varied and were due to several different types of adverse neonatal experiences or perinatal loss (see Table  2 ). The types of support that the service users received are detailed in Table  3 . These data highlight that one service user had only received ad hoc support on the neonatal unit; the remainder had all received more prolonged support via one-to-one or group-based therapeutic support (four of whom also had received ad hoc support at the neonatal unit or specialist clinic).

The FWS staff interviewed included seven psychological therapists ( n  = 7) and the project lead. Healthcare professionals who participated in an interview held different roles including neonatal nurses, ward managers and sisters, education leads and mental health neonatal nurses. The healthcare professionals’ length of service ranged from 9 months to 14 years.

In the following sections, we present two themes and associated sub-themes. The first theme - ‘creating time and space for support’ - details the informational, contextual, and relational basis of the FWS service, as well as barriers to service delivery. The second theme - ‘making a difference’ - describes the cognitive, emotional, and interpersonal benefits of the FWS for service users. Illustrative quotes are included with identifiers that use the abbreviations SU – service user, FWSS – Family Well-being service staff, or HCP – healthcare professional. Additional identifiers that signify the type of support the service user received are also included using the codes A (ad hoc support), G (group counselling) and O (one-to-one therapy).

Creating time and space for support

In this section, we describe how the FWS therapists worked to facilitate time and space for therapeutic support across six sub-themes - ‘ tailoring the communications’ , ‘a flexible and proactive approach’ , ‘being listened to without judgement’ , ‘independent from others’ , ‘not just about the baby’ and ‘ shared experiences’. A final sub-theme reports on the ‘barriers to service delivery’.

Tailoring the communications

FWS staff used various communication modes - verbal, leaflets, email, telephone, or text – to inform and communicate with service users. Some service users spoke positively about the incremental information received and how valuable it had been to tell them ‘everything I could expect’ (SU4:O&G): this, together with the perceived ‘ non-pushy’ approach of the FWS staff enabled them to make their own decisions and to access the support on their terms, ‘I just read through it [ leaflet] because it wasn’t kind of like it straight away , we’re gonna refer you. They said have a think’ (SU16:O). Another service user reported:

It was a lot of like, what’s gonna fit for me really. Like I wasn’t just kind of told, this is what you’re going to do and that kind of thing. Like, every step of the way I was asked, like, do you want to do this? Do you want to try this? You know, do you think that would work for you? And it felt really personal. (SU4:O&G)

Service users also appreciated the immediacy of contact from the therapists, ‘found it really good , they contacted me really quick’ (SU9:O), once a decision to receive support had been made.

A further means by which FWS staff helped to tailor communications and support service user engagement was via data sharing. Several service users highlighted the benefits of the FWS staff sharing their information with others in the service, thereby mitigating the need for repeating painful accounts:

She [FWP therapist] was aware that I was gonna be contacting. I think it is helpful that they already knew my background because it can avoid questions that you don’t particularly want to answer, or things that you don’t want to have to repeatedly go over. (SU3:G)

Those receiving ad hoc support were all encouraged to take up formal therapy following infant discharge. However, the therapists also offered a text message contact for service users who were not receptive to receiving more prolonged therapeutic support during their infant’s neonatal stay, e.g., ‘six weeks after you’ve been discharged just to check in’ (FWSS1). For some, this delay in service offer was considered ‘perfect’ as it meant that they accessed support that they ‘would not have accessed’ but has ‘ helped me no end’ (SU7:A&O). Although one of the FWS staff reflected that whilst this follow-up approach was not always successful, it provided ‘peace of mind’ (FWSS5) to know that it had been offered.

A flexible and proactive approach

Participants who accessed different forms of therapeutic support from the FWS spoke very positively about the flexible and proactive nature of the service. Proactive ad hoc support on the neonatal unit enabled service users to receive support while being with their babies. Healthcare staff felt parents were unlikely to prioritise their own mental health needs when ‘all they are concerned about is the baby’ – proactively approaching them ‘ where they are’ was therefore perceived to be the ‘best way of doing it by far’ (HCP8). Ad hoc support was also considered important in preventing service users from ‘slipping through the net’ (HCP5) by expecting them to join a waiting list for an appointment that they then decide not to access.

Flexibility in how the one-to-one therapy was provided (i.e., by telephone or face-to-face) was highly appreciated. Telephone appointments were valued for practical reasons such as childcare - ‘I can’t attend in person with two children ’ and wider work commitments. Accessing support from home also allowed service users to feel comfortable in their own space, which in turn enabled them to be more open with their therapist:

You’re in your space. I was comfy, I had my coffee and then I just felt like, I don’t know if I’d have opened up so much if I was in a room and it felt like counselling, like therapy (SU6:O).

Flexibility in service users being able to change appointments, ‘they changed every appointment that I needed changing […]it was brilliant’ (SU1:O) or delaying appointments ‘she didn’t mind me texting and saying I’m running 5–10 minutes late ’ (SU6:O) was highly valued. Service users also appreciated the freedom to go at their own pace: ‘if you wanted to contribute [during the group counselling], you could do , if you didn’t , you didn’t have to ’ (SU10:O&G). One service user reflected on how this personalised approach stimulated reciprocity in terms of individuals being able to ‘get out’ what they ‘put in’ (SU15:G). This flexibility was also echoed in the bereavement groups, with the discussion topics being based on the needs of the group rather than a prescribed plan:

[Group therapists] had something as sort of an idea for each session but they would always ask if there was anything that we as a group or individually wanted to focus on or cover. (SU3:G)

Being listened to without judgement

Service users repeatedly spoke of how much they valued feeling ‘heard and listened to and valued’ (SU5) by the FWS therapists; with these accounts provided by service users who had received ad hoc, one-to-one, or group-based support. One service user also felt that while the therapist was ‘paid to listen’ it was the fact that she seemed to ‘want to listen’ that made a difference (SU1:O). Several service users reflected on how the therapists’ active listening and person-centred non-judgmental approach meant they ‘ found her really easy to talk to , it’s a really good relationship’ (SU12:A&G), and was someone who they ‘could be completely open with’ (SU6:O):

The most helpful thing is having someone to listen to me and that has no judgment whatsoever, I have to say when I went on, she was calm, she was soothing and never felt one bit of like, oh my God, I can’t believe that’s happened […] There’s no judgment, […] she was there for me and only for me. (SU14:O)

Feeling listened to and having a good relationship with their therapist gave service users a sense of being ‘wholly seen’ and a safe space to be ‘able to feel safe and valued and respected’ (SU5:A&O). Some service users described how it was like they were talking to a friend who was ‘there for me ’:

It was just like talking with an old friend, if you know what I mean. And even though I’ve never met the lady before, she was very friendly […]. So it was nice. (SU13:O)

Independent from others

Whilst service users appreciated the friendliness and authenticity of their therapist, they also talked about how helpful it was to receive regular support from the same therapist who was independent of friends, family, and healthcare professionals. Several participants who received one-to-one or group-based support considered this to be helpful as it meant they could openly share how they felt without feeling like a burden:

I was really worried that when I was talking to like my husband or my mum and my sister or anything that that I was saying was just going to end up upsetting them and having someone to talk to or just felt like I can say whatever I want, […] Like it’s not gonna ruin their day, I can just say what I want, it was just so helpful really (SU4:O&G).

The positives of the therapists being separate from clinicians were related to challenges in the relationships between healthcare providers and parents due, e.g., to life-saving care being administered to their babies which was uncomfortable to watch:

So, it’s quite nice that they have that extra person to talk to who isn’t the person that just stuck a gastric tube down your baby and made him cry or, you know, or that just cannulated your baby (HCP1).

Healthcare professionals also spoke of how parents could attempt to ‘hold it together’ during interactions with healthcare staff, due to not wanting to give the ‘impression that they’re struggling’ (HCP6). Support from an ‘outsider’ perspective was therefore perceived to be crucial in breaking down these barriers and offering dedicated needs-led support.

Not just about the baby

Another reason service users felt they could talk openly about their feelings and experiences was due to the support being focused on their needs as individuals, rather than being about the baby, or being a parent:

It helped me in a lot more ways as sometimes it was nothing to do with being a mum or [baby] and yeah, it just worked really well’ (SU6:O).

Service users acknowledged the need to process their negative experiences but also the necessity of talking about other things that were affecting their mental health and their ability to cope:

I had to grieve with what had happened in the past. Cause normally I just push everything down and deal with it, I just get on with the next day. So, we [therapist and service user] went backwards for me to be able to move forward. (SU14:O)

‘My helping hour’ (SU6:O) as one service user who had received therapy described, and mirrored in others’ narratives, related to how much they appreciated and looked forward to taking time out each week to think about their needs:

When you’ve got a newborn and you’re wrapped up with, especially with someone with a condition and wrapped up with a feeding schedule, medicines, nappies, sleepless nights, blah blah, blah blah blah. I would never have then thought, you know what? Let’s take care of you. Let’s have an hour that’s just for me. (SU7:A&O)

Shared experience

Some service users who received support on an ad hoc, one-to-one or group basis spoke of how receiving support from a therapist who had faced a similar experience had ‘definitely helped’ . One pregnant service user who had had a previous miscarriage reported the benefits of receiving one-to-one support from a therapist who had faced their own experiences of infertility and subsequent in vitro fertilisation:

She’d gone through pretty much a very similar experience to me. She’d had very similar infertility issues, and she’s also gone through losses herself. So, it was easy to bond with her very quickly because you do when someone’s gone through that same experience (SU11:O).

Others referred to how receiving support from therapists who had ‘been through it all the same’ (SU1:O) helped them to feel ‘normal’ and ‘I wasn’t being dramatic or crazy’ (SU8:A). Whereas for others, it was receiving support from a therapist who understood the realities of parenthood that mattered:

Motherhood is hard, you know, like and my counsellor was a parent as well, so really helped to, like, justify those feelings are rational and just rationalise. (SU5:A&O)

Opportunities for group support also enabled service users to normalise and validate their experiences ‘with other people who have all gone through the same thing and have the same feelings ’ (SU4:O&G).

Barriers to service delivery

Overall, there were some challenges and barriers reported in relation to communication, access, and service delivery. First, in relation to communication, some service users referred for one-to-one or group support complained about a lack of information about when it would be received:

So, it was a bit frustrating waiting and not knowing whether it was then gonna be like weeks and weeks, or months, or whether it was gonna be like a few days. (SU4:O&G)

Several service users also described communication difficulties about the delay in follow-up after the initial assessment (when referred for formal therapy). This delay meant they had to ‘unravel’ the ‘worst parts you are struggling with’ and then ’putting the phone down’ with ‘no follow-up plan or coping mechanisms’ in place (SU10:O&G). The gaps in support provision were also expressed from within the service: ’it’s not great , because those mums and dads are waiting , and they’ve reached out , and that’s when they need the help ’ (FWSS7).

Despite the benefits of ad hoc support, access-related issues were raised about therapists being unable to provide support for practical as well as emotional-based reasons. From a practical perspective, the therapists only had limited time on the units which meant ‘some people may not see her’ (HCP1), and if parents did not live in the catchment area, then support could not be offered. Healthcare staff were not always notified about the FWS therapists’ availability at the unit. This information was considered important to ensure effective signposting to, ‘just to say to a parent , well if you want to speak to anybody , we’ve got our counsellor in on such-a-day’ (HCP6). From an emotional perspective, it was recognised that therapeutic support was not suitable for all, such as those ‘who are very closed down’ (FWSS1) or ‘scared’ of disclosing negative emotions particularly ‘the ones where there are social issues’ (HCP6).

Regarding service delivery, while several service users made positive comments about the flexible nature of support, in terms of access, delivery and amount received, some wished the sessions had been longer. One also spoke of an ‘awkward finish’ when the one-to-one sessions were ending:

[So, it can be like] ohh sorry, I think I’ve lost track of time a little bit, I think we’re gonna have to pull it up there and we’re gonna have to end. So, I’ll be like, alright, OK, right, yeah fine. And it can be a bit clunky in the way that it finishes rather than it drawing naturally to a conclusion. (SU10:O&G)

Making a difference

In this section, we describe service users’ reflections on the psychological, cognitive, behavioural, and social benefits of FWS support. Four sub-themes are detailed - ‘tools for positive coping’ , ‘enhanced well-being’ , ‘improved relationships with others’ and ‘confidence in returning to work’ .

Tools for positive coping

Several service users described how the therapeutic tools they were taught as part of their therapy sessions either on the ward, one-to-one, or in the group provided positive coping mechanisms to help with ongoing adversities: with one describing them as a ‘ toolbox’ to draw on when needed (SU4:O&G). The techniques were reported to have helped them understand and articulate how they were feeling, ‘to unpick , how it was that I was feeling what I was struggling with (SU10:O&G) and the breathing and distraction techniques enabled them to ‘stop blaming myself and start breathing’ and to ‘do something else to try take my mind off it’ (SU2:O). Other service users referred to how the support had helped them to know  ‘more about their triggers’ which helped them to feel strong and to retain a sense of control during uncontrollable and uncertain situations:

The tools just to step back and be like right, […] write down everything I can’t control and everything I can control of what my memories are and then cross everything I can’t change. Like I can’t control how sick she is. I can’t control her temperature, but what I can control is her feeds and being her mum and stuff like that […] They made me feel the strength that I’ve not felt in about 5 years. (SU5:A&O)

The therapeutic techniques provided by the therapists were an ongoing source of support to help service users in the extreme circumstances of the neonatal unit as well as in day-to-day life:

I relied on one of the meditations she sent me, and it just really, really centred me at night, even as I was feeling overwhelmed, just like putting my headphones in and just saying to my husband, if he wakes up and you just see to him, and that just helped me so much. (SU6:O)

Enhanced well-being

Many service users described how the FWS support had improved their psychological well-being, using terms such as feeling ‘lighter’ , more ‘optimistic’ and a ‘stronger person’ . Some service users referred to how the therapist had provided important crisis management. For one participant who received one-to-one therapy, this related to how the support helped to ‘pull her back’ from an emotional crisis each week, associated with the threats of a further potential pregnancy loss:

If I didn’t have [therapist] once a week, I dread to think where I would have been. It was kind of like, yeah, like each week she’d pull me back in, and then I’d probably go a bit crazy again, and then she’d pull me back in. (SU11:O)

Others described fundamental changes such as moving from a state of being unable to ‘ function properly’ to being back at work and ‘happy and getting on’ and feeling ‘like a different person ’ (SU4:O&G). Another service user also described how the one-to-one therapy had improved her well-being after a traumatic birth and neonatal stay to such an extent that she had become ‘ a better version’ of herself:

I just literally feel like me again, I suppose I think you just get so wrapped up with being mum and just being on all the time and as a mum you do normally lose your confidence and you do lose yourself so it’s more like feeling like me but even a better version that I liked of me. (SU6:O)

Improved relationships with others

Service users who received one-to-one or group-based support talked openly about how their relationships with their partners and family had been enhanced due to the support the FWS had provided. One reported how the support had helped her and her husband to ‘communicate with each other’ and ‘discuss how we were both feeling ’ (SU15:G). Another service user shared how the one-to-one telephone therapy had restored her relationship with her mother:

I don’t know what magic she’s done but my mum and my relationship it’s been really good to a point where before I couldn’t wait to get my mum out of my house, but now, it’s kind of like mum I need you and I appreciate you (SU16:O).

A further way the FWS support influenced relationships with others was regarding a future conception. While following a traumatic birth, neonatal stay or loss of a baby, individuals can be hesitant to have more children [ 25 ], the FWS was reported to have helped service users’ address these concerns. Bereavement group participants also reported finding hope for future family planning together, thereby enabling a futural peer support element to the therapeutic intervention:

Hopefully, we’ll be able to support each other, hopefully in the future through future pregnancies. Like it’d just be amazing if we all managed to get pregnant together and had our babies together that’d just be unbelievable. (SU15:G)

Confidence in returning to work

Service users who had received one-to-one support reflected on how the support had helped them to address their anxieties in returning to paid employment:

[Baby] is going to nursery that was quite triggering […] And I think if I had to deal with that a long time ago, like a few months ago, I’d have just blow my head there, I just couldn’t have done that. But now, I’ve just been, like, really calm and just quite open to it and just, sort of kept my cool really. (SU6:O)

Another service user who had experienced a neonatal loss reported: ‘ If I hadn’t had had the support I wouldn’t have gone back to work and I’d probably be in a much darker place’ (SU13:O). This woman reflected that working was positive for her emotional well-being, and how this would not have been possible without the support from the FWS.

In this paper, we present findings from an evaluation of a charity that provided ad hoc support, formal therapy and group support to service users who had a premature and/or sick infant or who had suffered a perinatal loss. We highlight the informational, contextual, and relational basis of how the support was experienced, and the cognitive, emotional, and interpersonal impacts of the FWS for service users. The findings of this paper contribute to the evidence supporting the need for emotional and psychological support for those who experience adverse maternity and neonatal outcomes in the perinatal period [ 3 ]. Overall, there appear to be key mechanisms - defined as the entities or activities responsible for the phenomenon (i.e., positive experiences and impact of FWS support) [ 26 ] – that underpinned effective support, irrespective of whether it was delivered on a one-to-one or group basis. These mechanisms include clear information, flexibility (in access and/or delivery), being independent of statutory provision, focused on individual needs, active listening, the use of therapeutic tools, and positive relationships with the therapist. Furthermore, while ‘ shared experiences’ are a key mechanism of group-based support, this was also evident in one-to-one therapy when service users received support from a therapist with a shared history.

A number of our findings echo those reported in a recent qualitative systematic review of women’s experiences of specialist perinatal mental health services [ 22 ]. Similar findings concern the importance of the therapist-service user relationship, with the therapist’s open, non-judgemental, and person-centred approach found to be essential to meaningful service experiences [ 22 ]. As reported in the review, and in our study, continuity was a key feature of relationship building that engendered safety and dependability [ 22 ] and for meaningful change. While some of the included papers in the review reported how women felt clinicians had real insight and understanding of perinatal mental health conditions [ 27 , 28 , 29 ], in our work, this also related to the therapists sharing their personal experience of perinatal mental health and/or loss. These findings resonate with those by Cleary and Armour who explored the dual identity of counsellors and therapists with experiential experiences of mental health issues [ 30 ] whereby self-disclosure enhanced the therapeutic relationship. They also concur with a qualitative study by Parker et al. who found counsellors having a working knowledge of neonates and the neonatal environment was crucial [ 31 ].

Similar to the wider literature, we found that service users benefitted from receiving support independent of health care and focused on their needs as individuals [ 32 , 33 ]. This finding further supports the need for independent specialist support such as provided within the UK-based specialist perinatal mental health and maternal mental health services [ 3 ]. While specialist mental health support has been found to help service users understand their infant’s needs and develop parent-infant relationships [ 22 , 27 , 34 ], in our study, the benefits were more individualised and included enhanced personal and social well-being. Our findings of the positive impacts of group-based support also align with the wider literature regarding the value of receiving validation and reassurance from peers with shared experiences [ 29 , 35 , 36 ], as well as opportunities for ongoing social support after the groups had ended [ 35 ]. The benefits gained via support from the therapists and within the groups signal post-traumatic growth described as “positive psychological change experienced as the result of the struggle with highly challenging life circumstances” [ 37 ]. This was evidenced through women feeling stronger, developing new relationships, more able to cope with future adversities and with a new and improved outlook on themselves and their situation [ 37 ].

Flexibility in rearranging appointments and the location of support being organised to suit individual service users encouraged access and an openness to share personal issues [ 22 ]. While complaints have been reported in the previous literature about service users being unaware of wider support provision and a lack of follow-up support [ 22 , 36 ], in our study, we found that tailored information and communications provided at multiple points helped facilitate engagement. Although resource-related challenges concerning the availability of the therapists on the unit and a lack of communication as to when this support was available were noted. A further difficulty related to the reported time lag following an initial assessment: this signifies a need for ongoing contact to ensure service users gain access to the right support at the right time [ 38 ]. Proactive support is a central tenet of emotional-based care [ 39 ]. This was clear in our study as the proactive nature of the support was essential to provide parents with care at a harrowing time and to facilitate access to more structured support post-infant discharge. However, as some service users can be reluctant to disclose perinatal mental health problems, due to feeling overwhelmed or potential fears of stigma and negative reprisals [ 40 ], alternative methods to ensure that all parents receive timely support is needed. Furthermore, despite service users from minoritised ethnic communities being at increased risk of poor perinatal mental health [ 41 , 42 , 43 ], they are less likely to access support [ 40 , 43 ]. A recent systematic review to explore the reasons why minoritised ethnic women do not access mental health services identified barriers at the individual (stigma, lack of awareness), organisational (inadequate resources), sociocultural (language, cultural barriers) and structural (lack of clear policies) levels [ 44 ]. Therefore, while approaching parents in the neonatal unit may help to overcome some of these barriers, further work to elicit if and how this can influence access to specialist support amongst ethnically minoritised service users is needed.

The limitations of this study are that overall, only ~ 30% of service users who accessed one-to-one therapy consented to share their demographic and outcome data for the evaluation. However, typically studies involving mental health intervention have difficulties with recruitment and retention of participants and often achieve very low response rates [ 45 ]. It also suggests that further work on how to encourage consent and provide reassurance about how their data will be used may be needed. The intention was to interview ~ 20 service users, with only 16 recruited, despite numerous recruitment efforts. This may be due to asking service users to participate while still receiving support, and indicates that other potentially more sensitive methods, such as writing to participants after they have ended support with the FWS may have been more successful. Also, while all service users had the opportunity to be re-interviewed ~ 6 months later, only two took up this offer – both of whom had received one-to-one therapy. This low take-up may be due to symptom resolution or symptom continuation, both of which could be associated with concerns for re-triggering or magnifying negative emotions. More flexible ways, such as using a journal, may encourage long-term qualitative insights to be captured. A further limitation is that over 30% of the participants had received more than one type of support and any nuances in the experiences of the different support options were not fully explored in the interviews. Most of the participants were from a White demographic background, which may reflect wider barriers to access to mental health support in ethnic minority populations [ 40 ]. We also intended to interview more healthcare professionals, and the small number recruited is likely indicative of busy, time-poor professionals. Future research could include focus groups incorporated as part of existing professional-based meetings to maximise participation. However, despite the recruitment challenges, a total of 35 participants is a large sample for qualitative research, and generated rich, in-depth insights into the views, experiences, impacts, facilitators, and challenges associated with the FWS.

This study describes how psychological support was provided for service users experiencing adverse maternity and neonatal outcomes and the impact of this support on individual and familial well-being. This work complements existing research into perinatal counselling-based interventions and highlights the value of providing therapeutic support during a sensitive time. Despite study limitations, the findings signify the need for independent, timely, flexible, needs-based, proactive, well-resourced psychological-based support. They also emphasise how the therapists’ open and non-judgmental approach and experiential knowledge are essential mechanisms of meaningful service provision. Implications for practice concern better communication regarding support availability, and timely follow-ups. Further means to engage those less willing to take up mental health support and who may have greater needs should be developed.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

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Thanks to all the participants for their time and invaluable contributions.

The research was commissioned and funded by Lancashire Women.

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GT was project lead who designed the original study, with support from RN. LN conducted interviews. LN and GT developed a coding framework which was applied to the transcripts by LN. All authors reviewed analyses and agreed final analytical decisions. All authors read and approved the final manuscript.

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Thomson, G., McNally, L. & Nowland, R. Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis. BMC Pregnancy Childbirth 24 , 569 (2024). https://doi.org/10.1186/s12884-024-06713-7

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• Costs, challenges and opportunities of decentralised chimeric antigen receptor T-cell production: a literature review and clinical experts’ interviews
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• http://orcid.org/0000-0001-9647-315X Gunar Stemer 1 , 2 ,
• Tarquin Mittermayr 3 ,
• Petra Schnell-Inderst 2 ,
• Claudia Wild 3
• 1 Pharmacy Department , University Hospital Vienna , Vienna , Austria
• 2 Institute of Public Health, Medical Decision Making and Health Technology Assessment , UMIT TIROL – University for Health Sciences and Technology , Hall in Tirol , Austria
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• Correspondence to Dr Gunar Stemer; gunar.stemer{at}akhwien.at

The objectives were to summarise the evidence and clinical experts’ views comparing the use of decentralised produced chimeric antigen receptor (CAR) T-cell therapies versus commercially available products, regarding drug costs, time to finalised product and other reported advantages, disadvantages, challenges and facilitators. A literature review according to the PRISMA guidelines was conducted in Medline, Embase and Trip databases. Publications were included if they reported information on cost estimates, time to finalised products and other outcomes of interest of a decentralised CAR T-cell production strategy. A structured interview guide was developed and used for qualitative expert interviews. Five experts were purposively selected, and interviews were either conducted face-to-face or online, and recorded for the purpose of transcription. Transcripts were analysed and categories and codes extracted. Reporting is based on the COREQ checklist for reporting qualitative research. Costs of decentralised produced CAR T-cells appear to be lower by a factor two to 14, compared with commercial products. But there is high uncertainty about this estimate, because it is unclear whether cost components included are comparable and due to the heterogeneity of the studies. The most commonly reported advantages were proximity to patients and decreased product risks and costs, whereas the continuing dependency on centrally manufactured reagents and specific characteristics of ‘fresh’ CAR T-cells are reported as disadvantages. Compliance with regulatory requirements is mentioned as the biggest challenge. The availability of closed-system production devices is reported as one main facilitator, as are clear commitment, secured financing and knowledge transfer from already experienced centres. Apparent cost differences open a field for healthcare decision-makers to discuss and justify investment costs for implementation of a complementing decentralised production programme and to realise other associated benefits of such a strategy, such as flexibility, patient proximity and expanding patient access.

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https://doi.org/10.1136/ejhpharm-2024-004130

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