where is the literature review in a journal article

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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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What is a Literature Review? How to Write It (with Examples)

A literature review is a critical analysis and synthesis of existing research on a particular topic. It provides an overview of the current state of knowledge, identifies gaps, and highlights key findings in the literature. 1 The purpose of a literature review is to situate your own research within the context of existing scholarship, demonstrating your understanding of the topic and showing how your work contributes to the ongoing conversation in the field. Learning how to write a literature review is a critical tool for successful research. Your ability to summarize and synthesize prior research pertaining to a certain topic demonstrates your grasp on the topic of study, and assists in the learning process. 

Table of Contents

• What is the purpose of literature review? 
• a. Habitat Loss and Species Extinction: 
• b. Range Shifts and Phenological Changes: 
• c. Ocean Acidification and Coral Reefs: 
• d. Adaptive Strategies and Conservation Efforts: 
• How to write a good literature review 
• Choose a Topic and Define the Research Question: 
• Decide on the Scope of Your Review: 
• Select Databases for Searches: 
• Conduct Searches and Keep Track: 
• Review the Literature: 
• Organize and Write Your Literature Review: 
• Frequently asked questions 

What is a literature review?

A well-conducted literature review demonstrates the researcher’s familiarity with the existing literature, establishes the context for their own research, and contributes to scholarly conversations on the topic. One of the purposes of a literature review is also to help researchers avoid duplicating previous work and ensure that their research is informed by and builds upon the existing body of knowledge.

What is the purpose of literature review?

A literature review serves several important purposes within academic and research contexts. Here are some key objectives and functions of a literature review: 2  

• Contextualizing the Research Problem: The literature review provides a background and context for the research problem under investigation. It helps to situate the study within the existing body of knowledge. 
• Identifying Gaps in Knowledge: By identifying gaps, contradictions, or areas requiring further research, the researcher can shape the research question and justify the significance of the study. This is crucial for ensuring that the new research contributes something novel to the field. 
• Understanding Theoretical and Conceptual Frameworks: Literature reviews help researchers gain an understanding of the theoretical and conceptual frameworks used in previous studies. This aids in the development of a theoretical framework for the current research. 
• Providing Methodological Insights: Another purpose of literature reviews is that it allows researchers to learn about the methodologies employed in previous studies. This can help in choosing appropriate research methods for the current study and avoiding pitfalls that others may have encountered. 
• Establishing Credibility: A well-conducted literature review demonstrates the researcher’s familiarity with existing scholarship, establishing their credibility and expertise in the field. It also helps in building a solid foundation for the new research. 
• Informing Hypotheses or Research Questions: The literature review guides the formulation of hypotheses or research questions by highlighting relevant findings and areas of uncertainty in existing literature. 

Literature review example

Let’s delve deeper with a literature review example: Let’s say your literature review is about the impact of climate change on biodiversity. You might format your literature review into sections such as the effects of climate change on habitat loss and species extinction, phenological changes, and marine biodiversity. Each section would then summarize and analyze relevant studies in those areas, highlighting key findings and identifying gaps in the research. The review would conclude by emphasizing the need for further research on specific aspects of the relationship between climate change and biodiversity. The following literature review template provides a glimpse into the recommended literature review structure and content, demonstrating how research findings are organized around specific themes within a broader topic. 

Literature Review on Climate Change Impacts on Biodiversity:

Climate change is a global phenomenon with far-reaching consequences, including significant impacts on biodiversity. This literature review synthesizes key findings from various studies: 

a. Habitat Loss and Species Extinction:

Climate change-induced alterations in temperature and precipitation patterns contribute to habitat loss, affecting numerous species (Thomas et al., 2004). The review discusses how these changes increase the risk of extinction, particularly for species with specific habitat requirements. 

b. Range Shifts and Phenological Changes:

Observations of range shifts and changes in the timing of biological events (phenology) are documented in response to changing climatic conditions (Parmesan & Yohe, 2003). These shifts affect ecosystems and may lead to mismatches between species and their resources. 

c. Ocean Acidification and Coral Reefs:

The review explores the impact of climate change on marine biodiversity, emphasizing ocean acidification’s threat to coral reefs (Hoegh-Guldberg et al., 2007). Changes in pH levels negatively affect coral calcification, disrupting the delicate balance of marine ecosystems. 

d. Adaptive Strategies and Conservation Efforts:

Recognizing the urgency of the situation, the literature review discusses various adaptive strategies adopted by species and conservation efforts aimed at mitigating the impacts of climate change on biodiversity (Hannah et al., 2007). It emphasizes the importance of interdisciplinary approaches for effective conservation planning. 

How to write a good literature review

Writing a literature review involves summarizing and synthesizing existing research on a particular topic. A good literature review format should include the following elements. 

Introduction: The introduction sets the stage for your literature review, providing context and introducing the main focus of your review. 

• Opening Statement: Begin with a general statement about the broader topic and its significance in the field. 
• Scope and Purpose: Clearly define the scope of your literature review. Explain the specific research question or objective you aim to address. 
• Organizational Framework: Briefly outline the structure of your literature review, indicating how you will categorize and discuss the existing research. 
• Significance of the Study: Highlight why your literature review is important and how it contributes to the understanding of the chosen topic. 
• Thesis Statement: Conclude the introduction with a concise thesis statement that outlines the main argument or perspective you will develop in the body of the literature review. 

Body: The body of the literature review is where you provide a comprehensive analysis of existing literature, grouping studies based on themes, methodologies, or other relevant criteria. 

• Organize by Theme or Concept: Group studies that share common themes, concepts, or methodologies. Discuss each theme or concept in detail, summarizing key findings and identifying gaps or areas of disagreement. 
• Critical Analysis: Evaluate the strengths and weaknesses of each study. Discuss the methodologies used, the quality of evidence, and the overall contribution of each work to the understanding of the topic. 
• Synthesis of Findings: Synthesize the information from different studies to highlight trends, patterns, or areas of consensus in the literature. 
• Identification of Gaps: Discuss any gaps or limitations in the existing research and explain how your review contributes to filling these gaps. 
• Transition between Sections: Provide smooth transitions between different themes or concepts to maintain the flow of your literature review. 

Conclusion: The conclusion of your literature review should summarize the main findings, highlight the contributions of the review, and suggest avenues for future research. 

• Summary of Key Findings: Recap the main findings from the literature and restate how they contribute to your research question or objective. 
• Contributions to the Field: Discuss the overall contribution of your literature review to the existing knowledge in the field. 
• Implications and Applications: Explore the practical implications of the findings and suggest how they might impact future research or practice. 
• Recommendations for Future Research: Identify areas that require further investigation and propose potential directions for future research in the field. 
• Final Thoughts: Conclude with a final reflection on the importance of your literature review and its relevance to the broader academic community. 

Conducting a literature review

Conducting a literature review is an essential step in research that involves reviewing and analyzing existing literature on a specific topic. It’s important to know how to do a literature review effectively, so here are the steps to follow: 1  

Choose a Topic and Define the Research Question:

• Select a topic that is relevant to your field of study. 
• Clearly define your research question or objective. Determine what specific aspect of the topic do you want to explore? 

Decide on the Scope of Your Review:

• Determine the timeframe for your literature review. Are you focusing on recent developments, or do you want a historical overview? 
• Consider the geographical scope. Is your review global, or are you focusing on a specific region? 
• Define the inclusion and exclusion criteria. What types of sources will you include? Are there specific types of studies or publications you will exclude? 

Select Databases for Searches:

• Identify relevant databases for your field. Examples include PubMed, IEEE Xplore, Scopus, Web of Science, and Google Scholar. 
• Consider searching in library catalogs, institutional repositories, and specialized databases related to your topic. 

Conduct Searches and Keep Track:

• Develop a systematic search strategy using keywords, Boolean operators (AND, OR, NOT), and other search techniques. 
• Record and document your search strategy for transparency and replicability. 
• Keep track of the articles, including publication details, abstracts, and links. Use citation management tools like EndNote, Zotero, or Mendeley to organize your references. 

Review the Literature:

• Evaluate the relevance and quality of each source. Consider the methodology, sample size, and results of studies. 
• Organize the literature by themes or key concepts. Identify patterns, trends, and gaps in the existing research. 
• Summarize key findings and arguments from each source. Compare and contrast different perspectives. 
• Identify areas where there is a consensus in the literature and where there are conflicting opinions. 
• Provide critical analysis and synthesis of the literature. What are the strengths and weaknesses of existing research? 

Organize and Write Your Literature Review:

• Literature review outline should be based on themes, chronological order, or methodological approaches. 
• Write a clear and coherent narrative that synthesizes the information gathered. 
• Use proper citations for each source and ensure consistency in your citation style (APA, MLA, Chicago, etc.). 
• Conclude your literature review by summarizing key findings, identifying gaps, and suggesting areas for future research. 

The literature review sample and detailed advice on writing and conducting a review will help you produce a well-structured report. But remember that a literature review is an ongoing process, and it may be necessary to revisit and update it as your research progresses. 

Frequently asked questions

A literature review is a critical and comprehensive analysis of existing literature (published and unpublished works) on a specific topic or research question and provides a synthesis of the current state of knowledge in a particular field. A well-conducted literature review is crucial for researchers to build upon existing knowledge, avoid duplication of efforts, and contribute to the advancement of their field. It also helps researchers situate their work within a broader context and facilitates the development of a sound theoretical and conceptual framework for their studies.

Literature review is a crucial component of research writing, providing a solid background for a research paper’s investigation. The aim is to keep professionals up to date by providing an understanding of ongoing developments within a specific field, including research methods, and experimental techniques used in that field, and present that knowledge in the form of a written report. Also, the depth and breadth of the literature review emphasizes the credibility of the scholar in his or her field.  

Before writing a literature review, it’s essential to undertake several preparatory steps to ensure that your review is well-researched, organized, and focused. This includes choosing a topic of general interest to you and doing exploratory research on that topic, writing an annotated bibliography, and noting major points, especially those that relate to the position you have taken on the topic. 

Literature reviews and academic research papers are essential components of scholarly work but serve different purposes within the academic realm. 3 A literature review aims to provide a foundation for understanding the current state of research on a particular topic, identify gaps or controversies, and lay the groundwork for future research. Therefore, it draws heavily from existing academic sources, including books, journal articles, and other scholarly publications. In contrast, an academic research paper aims to present new knowledge, contribute to the academic discourse, and advance the understanding of a specific research question. Therefore, it involves a mix of existing literature (in the introduction and literature review sections) and original data or findings obtained through research methods. 

Literature reviews are essential components of academic and research papers, and various strategies can be employed to conduct them effectively. If you want to know how to write a literature review for a research paper, here are four common approaches that are often used by researchers.  Chronological Review: This strategy involves organizing the literature based on the chronological order of publication. It helps to trace the development of a topic over time, showing how ideas, theories, and research have evolved.  Thematic Review: Thematic reviews focus on identifying and analyzing themes or topics that cut across different studies. Instead of organizing the literature chronologically, it is grouped by key themes or concepts, allowing for a comprehensive exploration of various aspects of the topic.  Methodological Review: This strategy involves organizing the literature based on the research methods employed in different studies. It helps to highlight the strengths and weaknesses of various methodologies and allows the reader to evaluate the reliability and validity of the research findings.  Theoretical Review: A theoretical review examines the literature based on the theoretical frameworks used in different studies. This approach helps to identify the key theories that have been applied to the topic and assess their contributions to the understanding of the subject.  It’s important to note that these strategies are not mutually exclusive, and a literature review may combine elements of more than one approach. The choice of strategy depends on the research question, the nature of the literature available, and the goals of the review. Additionally, other strategies, such as integrative reviews or systematic reviews, may be employed depending on the specific requirements of the research.

The literature review format can vary depending on the specific publication guidelines. However, there are some common elements and structures that are often followed. Here is a general guideline for the format of a literature review:  Introduction:   Provide an overview of the topic.  Define the scope and purpose of the literature review.  State the research question or objective.  Body:   Organize the literature by themes, concepts, or chronology.  Critically analyze and evaluate each source.  Discuss the strengths and weaknesses of the studies.  Highlight any methodological limitations or biases.  Identify patterns, connections, or contradictions in the existing research.  Conclusion:   Summarize the key points discussed in the literature review.  Highlight the research gap.  Address the research question or objective stated in the introduction.  Highlight the contributions of the review and suggest directions for future research.

Both annotated bibliographies and literature reviews involve the examination of scholarly sources. While annotated bibliographies focus on individual sources with brief annotations, literature reviews provide a more in-depth, integrated, and comprehensive analysis of existing literature on a specific topic. The key differences are as follows: 

References 

• Denney, A. S., & Tewksbury, R. (2013). How to write a literature review.  Journal of criminal justice education ,  24 (2), 218-234. 
• Pan, M. L. (2016).  Preparing literature reviews: Qualitative and quantitative approaches . Taylor & Francis. 
• Cantero, C. (2019). How to write a literature review.  San José State University Writing Center . 

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• 04 December 2020
• Correction 09 December 2020

How to write a superb literature review

Andy Tay is a freelance writer based in Singapore.

You can also search for this author in PubMed   Google Scholar

Literature reviews are important resources for scientists. They provide historical context for a field while offering opinions on its future trajectory. Creating them can provide inspiration for one’s own research, as well as some practice in writing. But few scientists are trained in how to write a review — or in what constitutes an excellent one. Even picking the appropriate software to use can be an involved decision (see ‘Tools and techniques’). So Nature asked editors and working scientists with well-cited reviews for their tips.

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doi: https://doi.org/10.1038/d41586-020-03422-x

Interviews have been edited for length and clarity.

Updates & Corrections

Correction 09 December 2020 : An earlier version of the tables in this article included some incorrect details about the programs Zotero, Endnote and Manubot. These have now been corrected.

Hsing, I.-M., Xu, Y. & Zhao, W. Electroanalysis 19 , 755–768 (2007).

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Ledesma, H. A. et al. Nature Nanotechnol. 14 , 645–657 (2019).

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Brahlek, M., Koirala, N., Bansal, N. & Oh, S. Solid State Commun. 215–216 , 54–62 (2015).

Choi, Y. & Lee, S. Y. Nature Rev. Chem . https://doi.org/10.1038/s41570-020-00221-w (2020).

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How to Write a Literature Review

What is a literature review.

• What Is the Literature
• Writing the Review

A literature review is much more than an annotated bibliography or a list of separate reviews of articles and books. It is a critical, analytical summary and synthesis of the current knowledge of a topic. Thus it should compare and relate different theories, findings, etc, rather than just summarize them individually. In addition, it should have a particular focus or theme to organize the review. It does not have to be an exhaustive account of everything published on the topic, but it should discuss all the significant academic literature and other relevant sources important for that focus.

This is meant to be a general guide to writing a literature review: ways to structure one, what to include, how it supplements other research. For more specific help on writing a review, and especially for help on finding the literature to review, sign up for a Personal Research Session .

The specific organization of a literature review depends on the type and purpose of the review, as well as on the specific field or topic being reviewed. But in general, it is a relatively brief but thorough exploration of past and current work on a topic. Rather than a chronological listing of previous work, though, literature reviews are usually organized thematically, such as different theoretical approaches, methodologies, or specific issues or concepts involved in the topic. A thematic organization makes it much easier to examine contrasting perspectives, theoretical approaches, methodologies, findings, etc, and to analyze the strengths and weaknesses of, and point out any gaps in, previous research. And this is the heart of what a literature review is about. A literature review may offer new interpretations, theoretical approaches, or other ideas; if it is part of a research proposal or report it should demonstrate the relationship of the proposed or reported research to others' work; but whatever else it does, it must provide a critical overview of the current state of research efforts. 

Literature reviews are common and very important in the sciences and social sciences. They are less common and have a less important role in the humanities, but they do have a place, especially stand-alone reviews.

Types of Literature Reviews

There are different types of literature reviews, and different purposes for writing a review, but the most common are:

• Stand-alone literature review articles . These provide an overview and analysis of the current state of research on a topic or question. The goal is to evaluate and compare previous research on a topic to provide an analysis of what is currently known, and also to reveal controversies, weaknesses, and gaps in current work, thus pointing to directions for future research. You can find examples published in any number of academic journals, but there is a series of Annual Reviews of *Subject* which are specifically devoted to literature review articles. Writing a stand-alone review is often an effective way to get a good handle on a topic and to develop ideas for your own research program. For example, contrasting theoretical approaches or conflicting interpretations of findings can be the basis of your research project: can you find evidence supporting one interpretation against another, or can you propose an alternative interpretation that overcomes their limitations?
• Part of a research proposal . This could be a proposal for a PhD dissertation, a senior thesis, or a class project. It could also be a submission for a grant. The literature review, by pointing out the current issues and questions concerning a topic, is a crucial part of demonstrating how your proposed research will contribute to the field, and thus of convincing your thesis committee to allow you to pursue the topic of your interest or a funding agency to pay for your research efforts.
• Part of a research report . When you finish your research and write your thesis or paper to present your findings, it should include a literature review to provide the context to which your work is a contribution. Your report, in addition to detailing the methods, results, etc. of your research, should show how your work relates to others' work.

A literature review for a research report is often a revision of the review for a research proposal, which can be a revision of a stand-alone review. Each revision should be a fairly extensive revision. With the increased knowledge of and experience in the topic as you proceed, your understanding of the topic will increase. Thus, you will be in a better position to analyze and critique the literature. In addition, your focus will change as you proceed in your research. Some areas of the literature you initially reviewed will be marginal or irrelevant for your eventual research, and you will need to explore other areas more thoroughly. 

Examples of Literature Reviews

See the series of Annual Reviews of *Subject* which are specifically devoted to literature review articles to find many examples of stand-alone literature reviews in the biomedical, physical, and social sciences. 

Research report articles vary in how they are organized, but a common general structure is to have sections such as:

• Abstract - Brief summary of the contents of the article
• Introduction - A explanation of the purpose of the study, a statement of the research question(s) the study intends to address
• Literature review - A critical assessment of the work done so far on this topic, to show how the current study relates to what has already been done
• Methods - How the study was carried out (e.g. instruments or equipment, procedures, methods to gather and analyze data)
• Results - What was found in the course of the study
• Discussion - What do the results mean
• Conclusion - State the conclusions and implications of the results, and discuss how it relates to the work reviewed in the literature review; also, point to directions for further work in the area

Here are some articles that illustrate variations on this theme. There is no need to read the entire articles (unless the contents interest you); just quickly browse through to see the sections, and see how each section is introduced and what is contained in them.

The Determinants of Undergraduate Grade Point Average: The Relative Importance of Family Background, High School Resources, and Peer Group Effects , in The Journal of Human Resources , v. 34 no. 2 (Spring 1999), p. 268-293.

This article has a standard breakdown of sections:

• Introduction
• Literature Review
• Some discussion sections

First Encounters of the Bureaucratic Kind: Early Freshman Experiences with a Campus Bureaucracy , in The Journal of Higher Education , v. 67 no. 6 (Nov-Dec 1996), p. 660-691.

This one does not have a section specifically labeled as a "literature review" or "review of the literature," but the first few sections cite a long list of other sources discussing previous research in the area before the authors present their own study they are reporting.

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Writing the Literature Review: Common Mistakes and Best Practices

• First Online: 21 November 2023

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• Kelly Heider 3  

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The literature review is an essential component of academic research writing, providing a comprehensive overview of existing research and informing the development of new studies. However, writing an effective literature review can be a challenging task for many authors, particularly those new to academic writing. This chapter aims to guide authors through the process of writing a literature review by highlighting common mistakes and best practices. The chapter begins with three short narratives that describe difficulties both novice and prolific authors encounter when writing the literature review. A chapter activity follows with steps that guide authors through the process of developing a research question to frame the literature review. Authors are then prompted to complete a self-assessment activity which includes a series of questions designed to build their skills as academic research writers. The body of the chapter recommends strategies and techniques to help authors locate and evaluate sources that will serve as the building blocks for a literature review that is thorough, current, and well-written. The chapter concludes with a discussion of the threats and benefits of artificial intelligence-based text production in relationship to academic research writing. Overall, this chapter provides practical guidance for authors looking to improve their literature review writing skills and enhance the quality of their research output.

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Issue: AI-Based Text Production in Academic Research Writing

 Artificial Intelligence (AI) is a relatively new technological development that can be used to support academic research writing, particularly reviews of research. Although it holds promise as a research tool, there are also concerns that AI-based scholarly writing could threaten not only the integrity but also the creativity of academic research writing. ChatGPT, an advanced chatbot developed by OpenAI (a nonprofit research company founded by Elon Musk and Sam Altman in 2015) has been at the center of much controversy as of late because of its ability to produce academic papers using artificial intelligence-based text production that have fooled academics and academic journal publishers (Hern, 2022 ; Lucey & Dowling, 2023 ; TechTarget, 2023 ). To demonstrate ChatGPT’s capabilities, consider its response to the question, “What is artificial intelligence-based text production?”.

Artificial Intelligence-Based Text Production is a process where machine learning algorithms are used to generate written content such as articles, product descriptions, social media posts, and more. It involves training machine learning models with vast amounts of data to learn how to generate human-like text automatically. The process can involve different techniques such as Natural Language Processing (NLP), deep learning, and neural networks to analyze and understand language patterns, grammar, context, and semantics. The resulting AI-generated text can be used for a wide range of applications, including content marketing, chatbots, language translation, and more. One of the main benefits of AI-based text production is that it can help businesses and organizations automate their content creation process, saving time and resources while producing high-quality content. However, it is important to note that AI-generated text may not always be perfect and may require human editing and review to ensure accuracy and coherence.

This response was produced by ChatGPT in about ten seconds. According to Anson ( 2022 ), “cutting and pasting all or part of this auto-generated text into a new text box can continue to prompt further content. The material is not plagiarized from existing sources but freshly composed. For this reason, it usually evades plagiarism-detection programs like Turnitin” (p. 40).

How Might AI-Based Text Production Threaten Academic Research Writing?

Obviously, computer-generated text that evades plagiarism-detection programs threatens the integrity of academic research writing. Some academic publishers have already banned or limited the use of AI-generated text in papers submitted to their journals (Lucey & Dowling, 2023 ). However, that is easier said than done. OpenAI recently developed a tool that attempts to distinguish between human-written and AI-generated text to prevent chatbots like ChatGPT from being abused, but it is only 26% effective (Wiggers, 2023 ).

Lucey and Dowling ( 2023 ) tested the credibility of ChatGPT by having expert reviewers examine papers produced by the chatbot. First, they asked ChatGPT to generate four parts of a research study: (1) research idea, (2) literature review, (3) dataset, and (4) suggestions for testing and examination. They chose a broad subject and instructed the chatbot to create a paper that could be published in “a good finance journal” (para. 6). Second, they pasted 200 relevant abstracts into the ChatGPT search box and asked the chatbot to consider the abstracts when generating the four-part research study. Finally, they asked academic researchers to read both versions of the AI-generated text and make suggestions for improvement. A panel of thirty-two reviewers read all versions of the four-part research study and rated them. In all cases, the papers were considered acceptable by the reviewers, although the chatbot-created papers that also included input from academic researchers were rated higher. However, “a chatbot was deemed capable of generating quality academic research ideas. This raises fundamental questions around the meaning of creativity and ownership of creative ideas—questions to which nobody yet has solid answers” (Lucey & Dowling, 2023 , para. 10).

How Might AI-Based Text Production Benefit Academic Research Writing?

Despite several publishers deciding to ban the inclusion of AI-based text production in submissions, some researchers have already listed ChatGPT as a co-author on their papers (Lucey & Dowling, 2023 ). There are many who believe there is no difference between the way ChatGPT produces text and the way authors synthesize studies in their literature reviews. In fact, the chatbot’s review is much more exhaustive because it can analyze “billions of existing, human-produced texts and, through a process akin to the creation of neural networks, generate new text based on highly complex predictive machine analysis” (Anson, 2022 , p. 39).

There are other advantages to using AI-based text production. It has the potential to aid groups of researchers who lack funding to hire human research assistants such as emerging economy researchers, graduate students, and early career researchers. According to Lucey and Dowling ( 2023 ), AI-based text production “could help democratize the research process” (para. 18). Anson ( 2022 ) also sees the potential in AI-based text production to “spark some new human-generated ideas” (p. 42), extract keywords, and create abstracts. The development of AI-based text production might also force instructors to change the way they teach academic writing. Instead of trying to detect or prevent the use of chatbots like ChatGPT, “a more sensible approach could involve embracing the technology, showing students what it can and can’t do, and asking them to experiment with it” (Anson, 2022 , p. 44). In other words, students could be asked to write about writing which leads to a deeper understanding of the writing process and the ability to transfer that understanding to any writing project (Wardle & Downs, 2019 ).

The Responsible Use of AI-Based Text Production in Academic Research Writing

The responsible use of AI-based text production in academic research writing involves understanding the technology's capabilities and limitations, as well as considering its potential impact on the research process. Researchers must carefully evaluate the intended purpose and context of using AI-generated text and make certain they are not compromising the authenticity and integrity of their research work. To ensure responsible use, it is essential to balance the benefits of increased efficiency and new insights with the need for originality and critical thinking in academic research writing. Researchers must also be transparent in disclosing the use of AI-generated text when submitting their work for publication. By adopting a responsible and thoughtful approach to the use of AI-based text production, researchers can maximize the benefits of the technology while maintaining the quality and authenticity of their research.

Applications of Technology

How to Write a Paper in a Weekend : https://youtu.be/UY7sVKJPTMA

Note : University of Minnesota Chemistry Professor, Peter Carr is not advocating for procrastination. This video outlines a strategy for generating a first draft after you have all your reading and notes assembled.

Research Gap 101: What Is a Research Gap & How to Find One : https://youtu.be/Kabj0u8YQ4Y

Using Google Scholar for Academic Research : https://youtu.be/t8_CW6FV8Ac .

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Heider, K. (2023). Writing the Literature Review: Common Mistakes and Best Practices. In: Renck Jalongo, M., Saracho, O.N. (eds) Scholarly Writing. Springer Texts in Education. Springer, Cham. https://doi.org/10.1007/978-3-031-39516-1_3

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Literature reviews, what is a literature review, learning more about how to do a literature review.

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A literature review is a review and synthesis of existing research on a topic or research question. A literature review is meant to analyze the scholarly literature, make connections across writings and identify strengths, weaknesses, trends, and missing conversations. A literature review should address different aspects of a topic as it relates to your research question. A literature review goes beyond a description or summary of the literature you have read. 

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All good quality journal articles will include a small Literature Review after the Introduction paragraph.  It may not be called a Literature Review but gives you an idea of how one is created in miniature.

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Want to publish a literature review? Think of it as an empirical paper

What to consider if you want to publish a literature review paper

Tatiana Andreeva - Fri 23 Apr 2021 07:50 (updated Fri 27 Oct 2023 17:26)

[Guest post by CYGNA member Tatiana Andreeva ]

When you’ve been reading a lot on a particular topic – for example, reviewing the literature for your research project or for your PhD – at some point it looks like you have enough material and reflections to publish this piece of work as a separate paper. Recognize this? If you ever tried it, you might know that publishing a literature review paper in an academic journal is a tricky task. The literature review publications come in so many forms, and there is no single cheat-sheet or established format like for empirical papers that you could follow to ensure success in publication.

Through my own journey of trial-and-error on this path, as well as through reviewing for journals and for PhD students in my course, I came up with an idea that will help you to increase the chances of publishing a literature review: think of a literature review as simply another empirical research project. Think of it as an empirical study, in which your data comes not from your usual fieldwork but from the articles that you review.

Many literature reviews can be thought of as a qualitative empirical study, in which the papers included in the review substitute interviews or field observations that you would usually collect and code. Some literature reviews, e.g., meta-analyses, are more like a quantitative empirical paper, in which various numbers you extract from the papers in your dataset substitute your survey data.

Seeing literature review in this way has three important implications for how we think about our literature review, and how we can design it to increase its chances of being interesting to others - that is, of being published.

Start with a relevant research problem and an interesting research question

We learn early in our academic career that any empirical paper should have a clear research problem and a clear research question. We frequently hear from journal editors and reviewers that just having a gap in the literature, or the fact that something has not been researched before, are not good enough to justify doing yet another empirical study. They say: you need to have a problem that your study can address, and you need to have a question that we currently don’t have an answer to. Only then your empirical study can add value to existing research. 

When we think of a literature review as of an empirical study, just with the different type of data at hand, we realize that the very same rationale applies. From this perspective the arguments that I often see in literature reviews – that there is no literature review in this particular area or that the existing literature reviews are quite dated – are not sufficient in the journal’s eyes to justify the publication of a literature review on a topic. If you aim to publish your literature review, start by thinking – what is the problem I would like to address? What would be my research question about this problem, that other readers would find interesting?

Design a methodologically-sound data collection and analysis protocol

When we think of any empirical study, we know that if we want to have reliable findings that will be accepted by our peers as trustworthy, we need to follow a transparent and well-thought data collection protocol. We also need to carefully choose and correctly apply relevant data analysis method. This goes without saying, right?

The same applies to the literature review! If we want our readers to trust our conclusions from the literature review, we need to make sure that the data we collect speaks to our research question, is of good quality, representative of the field, etc. The growing attention in business and management field to the systematic approach to literature reviews (Denyer & Tranfield, 2009; Rojon et al., 2021) reflects the rising expectations of the quality of the data used in literature review papers. Indeed, this approach offers exactly that: a clear data collection protocol, transparently communicated, so that someone else could replicate your study. For example, do the very same thing in 10 years and see how thinking on the topic has changed.

In the literature on doing literature reviews you will read that systematic literature review is only one of the types of literature reviews. Yet all recommendations on doing different types of the literature reviews share the idea that the data that you base your conclusions on has to be collected in a rigorous and transparent way (e.g., Callahan, 2014).  In this post you can find more references on how to ensure that your literature review “data collection” protocol meets the quality expectations.

So now you have all the papers you have carefully selected, how do you go about analysing them, so that peer academics would recognize your conclusions as reliable and robust? This is the trickiest part, and we have limited methodological advice published on this. In this post I’ve mentioned some papers that discuss specific methods of literature analysis. For example, I found that a sophisticated coding rubric leveraged our literature analysis to a different level (Sergeeva & Andreeva, 2016), but must acknowledge that developing this rubric was one of the most challenging tasks of this review paper. In O’Higgins et al. (forthcoming) we used a combination of qualitative content analysis with Pearson’s chi-squared (χ²) goodness of fit test in order to validate some of our conclusions. The trick is - as with any empirical study - your choice of the analytical method needs to fit with your research question. In sum, the message is: choose your method for analysis of the selected literature carefully, apply it rigorously, and explain it transparently.

Think of the theoretical contribution beyond description of the findings

When we think of our usual empirical work, be it qualitative or quantitative, we are well-aware that just the description of our data wouldn’t do. We know that we need to leverage what our data shows to explain how it informs the broader theory, how it compares to previous studies, what is new that we see from this data?

Again, the same logic applies to the literature reviews. In practice though, we often find it difficult to apply this advice to our literature review papers, because the description of the field in itself seems to be novel, especially if nobody did such a review before. In my experience, this argument does not persuade editors and reviewers of the journals, and often rightfully so.

For example, think of a typical quantitative empirical paper: a descriptive statistics table must be provided, but no one would claim a contribution based on it, right? Cropanzano (2009:1306-1307) offers a good exercise that explains why reviewers often don’t buy the description of the field as a novel contribution. He suggests: imagine somebody who read all the primary articles in your dataset, would they still learn anything from your literature review? And if the answer is “no”, then it’s likely that your review paper doesn’t have yet the level of contribution that is needed to turn it into a publication.

I think this exercise can also help to stimulate your thinking of what a theoretical contribution of your literature review could be. For example, think – what it is that I see in this literature that others are not likely to see?  In this blogpost you can find some papers that offer insights on how to leverage your literature review to have a theoretical contribution.  

Callahan, J.L. (2014). Writing literature reviews: A reprise and update. Human Resource Development Review , 13(3), 271–275. https://doi.org/10.1177/1534484314536705

Cropanzano, R. (2009). Writing nonempirical articles for Journal of Management: General thoughts and suggestions. Journal of Management , 35(6), 1304–1311. https://doi.org/10.1177/0149206309344118

Denyer, D., Tranfield, D. (2009). Producing a systematic review. In Buchanan, D., Bryman, A. (Eds.), The Sage handbook of organizational research methods (pp. 671–689). London, UK: Sage.

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• Published: 25 April 2024

A scoping review of academic and grey literature on migrant health research conducted in Scotland

• G. Petrie 1 ,
• K. Angus 2 &
• R. O’Donnell 2  

BMC Public Health volume  24 , Article number:  1156 ( 2024 ) Cite this article

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Migration to Scotland has increased since 2002 with an increase in European residents and participation in the Asylum dispersal scheme. Scotland has become more ethnically diverse, and 10% of the current population were born abroad. Migration and ethnicity are determinants of health, and information on the health status of migrants to Scotland and their access to and barriers to care facilitates the planning and delivery of equitable health services. This study aimed to scope existing peer-reviewed research and grey literature to identify gaps in evidence regarding the health of migrants in Scotland.

A scoping review on the health of migrants in Scotland was carried out for dates January 2002 to March 2023, inclusive of peer-reviewed journals and grey literature. CINAHL/ Web of Science/SocIndex and Medline databases were systematically searched along with government and third-sector websites. The searches identified 2166 journal articles and 170 grey literature documents for screening. Included articles were categorised according to the World Health Organisation’s 2016 Strategy and Action Plan for Refugee and Migrant Health in the European region. This approach builds on a previously published literature review on Migrant Health in the Republic of Ireland.

Seventy-one peer reviewed journal articles and 29 grey literature documents were included in the review. 66% were carried out from 2013 onwards and the majority focused on asylum seekers or unspecified migrant groups. Most research identified was on the World Health Organisation’s strategic areas of right to health of refugees, social determinants of health and public health planning and strengthening health systems. There were fewer studies on the strategic areas of frameworks for collaborative action, preventing communicable disease, preventing non-communicable disease, health screening and assessment and improving health information and communication.

While research on migrant health in Scotland has increased in recent years significant gaps remain. Future priorities should include studies of undocumented migrants, migrant workers, and additional research is required on the issue of improving health information and communication.

Peer Review reports

The term migrant is defined by the International Organisation for Migration as “ a person who moves away from his or her place of usual residence, whether within a country or across an international border, temporarily or permanently, and for a variety of reasons. The term includes several well-defined legal categories of people, including migrant workers; persons whose particular types of movements are legally-defined, such as smuggled migrants; as well as those whose status are not specifically defined under international law, such as international students.” [ 1 ] Internationally there are an estimated 281 million migrants – 3.6% of the world population, including 26.4 million refugees and 4.1 million asylum seekers – the highest number ever recorded [ 2 ]. The UN Refugee Society defines the term refugee as “ someone who has been forced to flee his or her country because of persecution, war or violence…most likely, they cannot return home or are afraid to do so .” The term asylum-seeker is defined as “someone whose request for sanctuary has yet to be processed.” [ 3 ].

Net-migration to Europe was negative in the 19th century due to higher levels of emigration, however in the mid-20th century immigration began to rise, because of an increase in migrant workers and following conflicts in the Middle East and North Africa [ 4 ]. Current migration drivers include conflicts alongside world-wide economic instability, exacerbated by the Covid-19 pandemic [ 5 ]. Environmental damage due to climate change is expected to inflate the number of asylum seekers entering Europe in future [ 6 ]. The increase in migration to Europe is not a short-term influx but a long-term phenomenon, and European nations must adapt and find solutions to resulting financial, safeguarding and health challenges [ 7 ].

Data on healthcare use by migrants in Europe is variable, which means cross-country comparisons are inadequate [ 8 ]. Many countries do not record migration information within health records and all use disparate criteria to classify migrant status. The lack of comparative data hinders public health surveillance and effective interventions [ 9 ]. Even where information is available, results can be contradictory due to the multifarious migrant population. Migrants have a wide range of origin countries, socio-economic position, age and journeys undertaken which can affect health status [ 10 ].

Migrants initially may have better health than the general population, known as the ‘Healthy Migrant effect’ [ 11 ]. However, health declines with increasing length of residence [ 12 ] and over time to levels comparable with the general population [ 13 ]. Second generation immigrants may have higher mortality than average [ 14 ]. The process of acculturation to the host country, with adoption of unhealthy lifestyle and behaviours, increases the risk for chronic disease [ 15 ]. In addition, inequalities in health of migrants compared to host populations has been confirmed by wide-ranging research [ 16 ].

Host countries may limit healthcare access, with undocumented migrants sometimes only entitled to emergency care [ 17 ]. Even when access is granted, inequitable services can affect quality of care due to language barriers and cultural factors [ 18 ]. Poor working/living conditions and discrimination can exacerbate health inequalities [ 12 ]. Processing facilities for asylum seekers are frequently overpopulated, stressful environments [ 19 ] and threat of deportation, lack of citizenship rights and integration can negatively affect health and access to care [ 20 ]. Undocumented workers are unprotected by health and safety legislation leading to dangerous working conditions and injuries [ 15 ].

A systematic review of migrant health in the European Union (EU) found migrants have worse self-perceived health than the general population [ 21 ]. Research evidence indicates increased prevalence of cardiovascular disease, diabetes, mental health disorders and adverse pregnancy outcomes. Exposure to conflict, harsh travel conditions and suboptimal vaccine programmes can mean higher risk of communicable disease [ 22 ]. Scoping reviews have also been conducted to describe trends within migration health research in the United Kingdom (UK) [ 23 ] and identify gaps for future research agendas in the UK [ 23 ] and in the Republic of Ireland [ 24 ].

Almost three-quarters (73%) of published migration health research in the UK has been conducted in England, focusing primarily on infectious diseases and mental health. There is limited evidence on the social determinants of health, access to and use of healthcare and structural and behavioural factors behaviours that influence migrant health in the UK [ 23 ]. By contrast, a large amount of the migration research conducted in the Republic of Ireland has focused on the social determinants of health, and on health system adaptations, with a paucity of research focusing on improving health information systems [ 24 ].

Migration and Health in Scotland

Immigration to Scotland began to rise in 2003 with the expansion of the EU [ 25 ]. The population in Scotland increased from 5.11 million to 5.47 million between 2005 and 2020 and is predicted to continue rising until 2028 [ 26 ] despite low birth rates, with the increased population resulting from inward migration [ 27 ]. Scotland’s population is becoming more ethnically diverse [ 28 ] and susceptibility to different health conditions varies by ethnic group, which has implications for the planning and provision of health services [ 29 ]. 7% of the current Scottish population are non-UK nationals and 10% were born outside Britain. The commonest countries of origin were Poland, Ireland, Italy, Nigeria and India [ 30 ].

Within Scotland, linking health data to ethnicity is standard in order to monitor and improve health of minority groups [ 31 ]. Ethnic background can differ from country of birth which means migration status cannot be assumed [ 32 ], although health inequalities experienced by migrants often extend to affect all ethnic minority groups [ 33 ]. The Scottish Health and Ethnicity Linkage Study (SHELS) linked census data to health records of 91% of the population which has provided information on mortality and morbidity by ethnic group and country of birth [ 34 ]. SHELS research indicates that the white-Scottish population have a higher mortality rate than other ethnic groups. This may be consequent to the comparatively poor health of the Scottish population relative to other European nations: high mortality rates in the general population may cause a perception that the health of minorities is more advantageous than in reality [ 35 ].

Cezard et al’s [ 13 ] analysis of self-perceived health among people in Scotland found that being born abroad had a positive impact on health status. Health declined with increased length of residence, which may be explained by cultural convergence with the majority population. Allik et al. [ 36 ] compared health inequalities by ethnic background and found that with increasing age, health differences reduced thus people aged over 75 of all ethnicities had similar or worse health status than White-Scottish people. While working-age migrants appear to be healthier than the White Scottish population, it cannot be assumed that in future this would extend to older age groups.

Research has shown deprivation as a cause of heath inequalities among ethnic minority and migrant groups [ 37 ]. The socio-economic status of minority ethnic groups in Scotland is unusual, as most are of similar or higher status than the white-Scottish population [ 38 ]. Therefore, public health interventions targeting deprivation may not address risk-factors for ethnic minorities and migrants [ 36 ]. Further research on determinants of health in migrants can help with planning and design of inclusive policies.

The 2011 census indicated that 50% of immigrants lived in the cities of Edinburgh, Glasgow, and Aberdeen. Glasgow had a greater percentage of non-European immigrants due to participation in the Asylum dispersal programme [ 39 ]. 10% of UK asylum seekers are placed in Glasgow, but records are not kept following approval of asylum claims, therefore the size of the refugee population is unknown [ 40 ]. While immigration is controlled by the British government, in policy areas devolved to the Scottish government, refugees and asylum seekers have more rights than elsewhere in UK, including access to primary healthcare for undocumented migrants [ 40 ]. Despite the mitigating effect of Scottish policies, asylum seekers’ health is worsened by the asylum process and associated poverty, marginalisation, and discrimination [ 40 ]. Health deteriorates with increasing length of time in the asylum system [ 40 ] and asylum seekers and refugees have additional health needs and require enhanced support [ 41 ]. Research on the health needs of asylum seekers in Scotland is required to ensure adequate healthcare.

Aim and objectives

While scoping reviews on migrant health have been carried out in Europe [ 12 ], Ireland [ 24 ] and the UK [ 23 ] none are currently specific to the Scottish context. Given the devolved government of Scotland and demographics described above, a targeted review would help to clarify research priorities, with the aim of improving health and health care within the migrant community in Scotland. This work therefore builds on the published scoping review of migrant health in the Republic of Ireland [ 24 ]. The authors recommend replication of the study in other countries to facilitate cross-country comparison. Our aim was to scope peer-reviewed research and grey literature on migrant health conducted in Scotland and identify any gaps in the evidence. Our objectives were to: [1] understand the extent of the available research by topic area [2] summarise the types of research already conducted, populations studied, topics covered and approaches taken [3], map the existing research conducted in Scotland and [4] identify areas for future research based on any gaps in the evidence identified.

A scoping review was conducted as they can aid detection of evidence gaps [ 42 ] and allow incorporation of grey literature in topics with insufficient published research [ 43 ]. Arksey and O’Malley’s [ 44 ] five stage scoping review framework was used.

Stage 1: identifying the research question

Arskey and O’Malley [ 44 ] suggest maintaining a broad approach to identifying the research question, in order to generate breadth of coverage. On this basis, and in line with the research question identified in the Villarroel et al. [ 24 ] scoping review, our research question was framed as follows: What is the scope, main topics and gaps in evidence in the existing literature on health of international migrants living in Scotland? Arksey and O’Malley [ 44 ] highlight the importance of defining terminology at the outset of scoping reviews. For consistency, we used the broad definition of ‘migrant’ as per Villaroel et al. [ 24 ], from the International Organisation for Migration (IOM) [ 1 ]. References to refugees or asylum seekers followed the United Nations Refugee Agency definitions [ 3 ].

Stage 2: identifying relevant studies

Electronic database searches identified reports alongside a grey literature search, in line with Arskey and O’Malley’s [ 44 ] guidance to search for evidence via different sources. CINAHL, Web of Science, SocIndex and Medline academic databases were selected with input from co-authors. Search terms for the review were based upon those used by Villaroel et al. [ 24 ] with additional relevant terms from Hannigan et al. [ 9 ] The strategy combined three sets of terms for: Migrants (e.g., refugee, migrant, immigrant or newcomer), Scotland and Health. Both free text terms and index terms were used and adapted to the 4 academic databases and searches were run on 10th March 2023 (see Additional File 1 for database search strategies). Thirteen Government, University, and third-sector websites in Scotland were scoped for selection then hand-searched for grey literature (listed in Additional File 1 ).

Stage 3: study selection

Net-migration to Scotland increased in the 2000s [ 27 ] hence a date range of January 2002-March 2023 was used to identify evidence. The search was limited to English only. Inclusion/exclusion criteria for the studies were based on those used by Villaroel et al. [ 24 ] and expanded upon following discussion with co-authors (see Table  1 ). Reports were included if based on primary or secondary research on the health of international migrants in Scotland and used qualitative, quantitative or mixed methods research design. International or UK based reports were only included if Scottish results were documented separately. Reports on the health of ethnic minority groups in Scotland was included if place of birth was recorded. Research on internal (non-international) migrants within Scotland, either moving from one Scottish area to another or from another part of the United Kingdom to Scotland, were excluded.

Stage 4: data charting

All records were saved to RefWorks for screening. Records were first screened at title/abstract stage with 10% independently checked by the co-authors. The remaining reports were single screened using full text by the first author. Data from the included records was extracted and organised in tabular form under the following headings, which were agreed by team members: article type (peer-reviewed article or grey literature), publication date, geographical setting, study/intervention’s target population, funding, primary research focus on migrant health (y/n), study objective, data collection method, study design (qualitative/quantitative/mixed) and main finding. Reports were not critically appraised in this scoping review.

Stage 5: collating, summarising and reporting results

A report (either a peer-reviewed journal article or grey literature report) is used as our unit of analysis. In order to present the range of research identified, reports were grouped by the different headings in our data charting table and the outcomes considered for relevance to our scoping review’s aim. Our Results summarise the recency, focus, study designs and funding sources of the identified research, followed by the geographical settings and whether Scotland was included in international research reports. Reports were grouped by their study population and further sub-divided by publication type and geographical area for summarising. Finally, the WHO’s European strategy and action plan (SAAP) for refugee and migrant health [ 7 ] is a policy framework designed to help governments and other stakeholders monitor and improve migrant health in Europe. There are nine strategic areas in the WHO’s SAAP, which prioritise the most salient issues. In line with Villaroel et al’s [ 24 ] approach and in order to compare scoping review outcomes, these areas were used to categorise the findings of this review. Each report was matched to the most appropriate SAAP:

Establishing a Framework for Collaborative Action.

Advocating for the right to health of refugees.

Addressing the social determinants of health.

Achieving public health preparedness and ensuring an effective response.

Strengthening health systems and their resilience.

Preventing communicable disease.

Preventing and reducing the risks caused by non-communicable disease.

Ensuring ethical and effective health screening and assessment.

Improving health information and communication.

The primary focus (aims and objectives) of each report was used to identify the relevant SAAP area/areas. To improve reliability, results were compared using coding criteria used in Villaroel et al’s study (MacFarlane 2023, personal communication, 31st May). 10% of the reports were checked by one co-author to ensure consistent coding to SAAP categories. Any instances of uncertainty in mapping reports to the relevant SAAP area/areas were discussed and resolved by team members.

This scoping review of the literature on migrant health in Scotland identified 2166 records from academic literature databases, following duplicate removal, and 170 records from website searches (see Fig.  1 ). Following screening, a total of 71 peer-reviewed journal articles and 29 grey literature studies (totalling 100 reports) were included for analysis (Results table and reference list are presented in Additional File 2 ).

Flow chart illustrating the identification of sources of evidence included in the scoping review

Overall findings

The majority of reports were published between 2013 and 2022. Fifty-eight reports (58%) focused exclusively on migrant health [ 18 , 39 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 , 99 , 100 , 101 , 102 ]. 23 centred on health but included other populations in addition to migrants – for example research on ethnic minorities or other vulnerable groups [ 13 , 31 , 35 , 103 , 104 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 , 114 , 115 , 116 , 117 , 118 , 119 , 120 , 121 , 122 ]. Seventeen reports were included where the sample population were migrants, but the primary topic was not health – for example destitution, integration, and service needs [ 27 , 73 , 74 , 123 , 124 , 125 , 126 , 127 , 128 , 129 , 130 , 131 , 132 , 133 , 134 , 135 ]. Health data was reported as part of the wider subject matter. One report [ 136 ] looked at the social determinants of breastfeeding including migrant status and one [ 137 ] compared attitudes to aging and family support between countries.

Funding sources were not declared for 35 (35%) of reports. The Scottish Government funded 20 reports (20%) [ 13 , 27 , 32 , 39 , 45 , 46 , 47 , 66 , 77 , 88 , 99 , 100 , 101 , 102 , 113 , 116 , 119 , 121 , 129 , 134 ]. Other common sources of funding included Government funded public bodies ( n  = 13) [ 45 , 48 , 49 , 50 , 51 , 52 , 53 , 104 , 107 , 113 , 116 , 131 , 136 ], the Scottish Health Service ( n  = 18) (either the National Health Service (NHS) [ 13 , 54 , 56 , 57 , 58 , 59 , 102 , 113 , 116 ], local NHS trusts [ 45 , 60 , 61 , 77 , 102 , 103 , 112 ] or by Public Health Scotland [ 13 , 113 ]) Eleven reports (11%) were funded by Universities. The charity sector financed 15 (15%) reports [ 53 , 63 , 66 , 69 , 70 , 71 , 72 , 73 , 74 , 103 , 111 , 123 , 125 , 132 , 138 ] and the EU and Scottish local authorities funded four reports each [ 45 , 62 , 75 , 76 , 77 , 102 , 125 , 135 ]. Professional bodies financed one report [ 126 ] as did the Japanese government [ 64 ]. No reports received funding from the business sector. The biggest sources of funding for grey literature were Refugee charities (40%) and the Scottish government (30%) (see Fig. 2 ).

Sources of funding for migrant health research in Scotland

Research methods and data collection

52% of reports used qualitative research methods. Forty-five reports (86%) collected data using 1–1 interviews and 24 (46%) used focus groups. Other methods of data collection included questionnaires (six studies (11%)), workshops (two studies (3.85%)) and observation (two studies (3.85%)). Oral/written evidence, guided play sessions, family case studies and participatory activity sessions were used in one report each.

28% of reports used quantitative research methods, most commonly cross section design (ten studies (36%)) and cohort design (18 studies (64%)). Information was obtained from databases including medical records, Census data and national records in 21 reports (75%). Questionnaires were used in six reports (21%). Other methods including body measurements, food diaries, blood samples, interviews and case reviews were used in 1 report each.

20% of reports used mixed methods. The most common method of data collection was questionnaires in 14 reports (70%), interviews in ten reports (50%), focus groups in seven reports (35%), workshops in three reports (13.6%), and databases in three reports (13.6%). Other methods included literature review in two reports (10%), case note reviews in two reports (10%) and one reports each used mapping and school records.

Geographical areas of study

Ninety-one reports were situated in Scotland, of which 35 (38.5%) covered the whole country and 56 (61.5%) specified a city or area where research was undertaken. Some UK and international reports also specified the area of Scotland. The largest share of research within Scotland overall was in Glasgow with 36 reports, followed by Edinburgh with 16 reports, Lothian with six reports, Aberdeen with five reports and Grampian with three reports. The Northeast, Stirling, Highlands, Inverness, Lanarkshire, Motherwell and Selkirk had one report in each area.

There were seven international reports, three on mortality by country of birth [ 75 , 76 , 78 ], one on cross cultural communication [ 79 ], one on maternity care in Poland and Scotland [ 99 ], one comparing attitudes to aging in China and Scotland [ 137 ] and one on the link between birthweights and integration of migrants [ 64 ]. The remaining two reports were UK based, one on immunisation of Roma and traveller communities [ 117 ] and one on the link between ethnic diversity and mortality [ 104 ]. All the included international and UK reports documented the Scottish data separately within results.

Migrant population

Thirty-one reports included all migrants in the study population. The remaining reports included 30 studies on asylum seekers/refugees, 11 on Polish migrants, ten on Africans, six each on South Asians/Chinese/European, three on Arabs, and two on Roma populations (see Fig.  3 ). Most reports did not specify the country of origin for Asylum seekers and refugees - where country of birth was specified, reports were also included in the appropriate category.

Migrant populations studied in health research in Scotland

Grey literature and peer-reviewed reports differed in population focus. The most common populations of interest in grey literature were asylum seekers/refugees consisting of 18 reports (62%) [ 27 , 47 , 54 , 55 , 59 , 63 , 70 , 71 , 72 , 73 , 74 , 123 , 125 , 127 , 128 , 132 , 134 , 138 ] while for peer-reviewed journals 24 reports (34%) focused on all migrants [ 13 , 35 , 45 , 48 , 64 , 76 , 78 , 79 , 80 , 81 , 104 , 105 , 108 , 109 , 113 , 114 , 115 , 116 , 118 , 120 , 121 , 122 , 136 ].

Migrant study population also differed by local area; Glasgow city, where the majority of research occurred, had 18 reports of 36 (50%) on Asylum seekers/refugees [ 47 , 48 , 52 , 53 , 54 , 55 , 58 , 63 , 70 , 71 , 72 , 82 , 83 , 127 , 128 , 130 , 138 , 139 ] eight reports (22%) on Africans [ 52 , 53 , 84 , 85 , 86 , 87 , 106 , 107 ], seven reports (19%) on all migrants [ 45 , 48 , 80 , 102 , 104 , 105 , 121 ] and two reports (5.5%) on Roma migrants [ 103 , 117 ]. Other populations had one reports each. In Edinburgh five reports of 16 (31%) were on the Polish population [ 56 , 67 , 68 , 89 , 90 ], and two reports (12.5%) on Asylum seekers/refugees [ 60 , 133 ], Chinese [ 62 , 137 ], South Asian [ 46 , 119 ], all migrants [ 105 , 121 ] and Africans [ 87 , 107 ]. The remaining migrant groups had one report each. Other areas of Scotland show no clear pattern with studies in disparate migrant population groups.

Number of reports per Strategic and Action Plan (SAAP) Area

SAAP Area mapping

1. establishing a framework for collaborative action.

Nine reports had a primary focus on collaborative action and were categorised under SAAP area 1 (see Fig.  4 ) [ 66 , 70 , 72 , 73 , 103 , 125 , 129 , 132 , 134 ]. Four reports (33%) used a mixed methods study design, the remaining five reports (67%) used a qualitative design. One report [ 66 ] focused on the epidemiology of female genital mutilation and a proposed intervention strategy. One report [ 66 ] focused on the epidemiology of female genital mutilation and a proposed intervention strategy. One report [ 103 ] evaluated service provision to the Roma community in Glasgow. The remaining reports focused on refugees and asylum seekers: four [ 73 , 125 , 132 , 134 ] evaluations of refugee integration projects, one [ 70 ] on services available to pregnant women, and one [ 72 ] an assessment of a peer-education service. One report [ 129 ] was a review of service provisions for migrants during the Covid-19 pandemic. All reports in SAAP area 1 were grey literature and three (37.5%) had a primary focus on migrant health while four (50%) focused on integration, one (11%) included data on ethnic minorities and one (11%) on services during the covid-19 pandemic. The majority (seven reports (78%)) were also categorised to another SAAP area most commonly area 2 (five studies (55%)) or area 5 (four studies (44%)).

2. Advocating for the right to health of refugees

Nineteen reports focused on SAAP area 2, advocating for the right to health of refugees (see Fig.  4 ) [ 47 , 52 , 53 , 54 , 55 , 63 , 70 , 71 , 83 , 103 , 123 , 124 , 125 , 127 , 128 , 129 , 134 , 138 , 140 ]. Sixteen reports (84%) had a qualitative study design and the remaining three (16%) reports used mixed methods. Nine reports (47%) focused on the health impact of the asylum system [ 52 , 55 , 71 , 74 , 123 , 127 , 128 , 129 , 138 ], five (26%) on health and access to care [ 47 , 54 , 83 , 103 , 124 ], two (10.5%) on maternity care [ 63 , 70 ], two (10.5%) on integration services [ 125 , 134 ] and one report on mental health in HIV positive migrants [ 53 ]. Nine reports (47%) had a primary focus on migrant health while the remaining 10 (53%) also involved wider social issues. The majority (15 (79%)) of reports were grey literature. All the articles in this group overlapped with another SAAP area. Area 3 is the most common joint category with ten reports (53%) followed by area 5 with seven reports (37%), area 1 shares five reports (26%), while areas 4 and 8 share one report each (5%).

3. Addressing the social determinants of health

Twenty-nine reports were categorised to SAAP area 3 – addressing the social determinants of health (see Fig.  4 ) [ 13 , 27 , 45 , 50 , 52 , 55 , 60 , 62 , 63 , 65 , 68 , 71 , 74 , 80 , 81 , 82 , 91 , 92 , 93 , 102 , 112 , 123 , 124 , 127 , 128 , 136 , 137 , 138 ]. The majority (14 (48%)) used a qualitative study method, eight (28%) used quantitative methodology and the remaining seven reports (24%) used mixed methods. Nineteen reports (65.5%) were peer-reviewed journals [ 13 , 45 , 50 , 52 , 60 , 62 , 63 , 65 , 68 , 80 , 81 , 82 , 91 , 92 , 93 , 104 , 112 , 124 , 136 , 137 ] and ten (34.5%) were grey literature [ 27 , 55 , 63 , 71 , 74 , 102 , 123 , 127 , 128 , 138 ]. Ten reports (34.5%) discussed the effects of the asylum system on health [ 27 , 52 , 63 , 71 , 74 , 123 , 124 , 127 , 128 , 137 ] and one (3.5%) migration and health [ 50 ]. Six reports (21%) focused on culture and ethnicity [ 82 , 92 , 102 , 104 , 112 , 137 ], five reports (17%) discussed economic and environmental determinants of health [ 13 , 45 , 67 , 81 , 93 ] and five reports (17%) the health impact of social activities [ 55 , 60 , 62 , 80 , 91 ]. Of the remaining reports, one [ 65 ] discussed Brexit and mental health of European migrants and one discussed the effect of coping strategies on wellbeing in Polish migrants [ 68 ]. Most reports, 18 (62%) had a primary focus on migrant health [ 45 , 50 , 52 , 55 , 60 , 62 , 63 , 65 , 67 , 68 , 71 , 80 , 81 , 82 , 91 , 92 , 93 , 102 ], six reports (21%) discussed wider social factors in addition to health [ 74 , 123 , 124 , 127 , 128 , 138 ]. Of the remaining reports three (10%) looked at ethnic background and country of birth [ 13 , 112 , 136 ], one [ 27 ] included other vulnerable groups and one [ 137 ] included people living in China and Chinese migrants to Scotland. Thirteen reports were also categorised to one or more additional SAAP area - ten (34%) were also applicable to area 2 [ 52 , 55 , 63 , 71 , 74 , 123 , 124 , 127 , 128 , 138 ], three (10%) to area 5 [ 63 , 82 , 92 ] and one (7%) to area 4 [ 27 ].

4. Achieving public health preparedness and ensuring an effective response

Twenty-one reports were assigned to SAAP area 4 (see Fig.  4 ) [ 27 , 31 , 35 , 39 , 47 , 57 , 64 , 75 , 76 , 77 , 78 , 94 , 104 , 108 , 109 , 111 , 113 , 114 , 116 , 120 , 135 ] of which fourteen (67%) used quantitative research methods, four (19%) mixed methods and three (14%) qualitative methods. Thirteen (62%) reports were peer-reviewed journals [ 35 , 59 , 64 , 75 , 78 , 104 , 108 , 109 , 111 , 113 , 114 , 116 , 120 ] and eight (38%) grey literature [ 27 , 31 , 39 , 47 , 57 , 77 , 94 , 135 ]. Most reports (12 (57%)) focused on morbidity and mortality in migrant populations [ 31 , 35 , 64 , 75 , 76 , 78 , 104 , 108 , 109 , 113 , 114 , 116 ]. Six (29%) investigated health status and healthcare needs in migrant groups in Scotland [ 39 , 47 , 57 , 77 , 94 , 135 ]. Two reports (9.5%) analysed the epidemiology of HIV infections [ 111 , 120 ] and the remaining report focused on the health needs of young people during the covid-19 pandemic [ 27 ]. Nine reports (43%) had a primary focus on migrant health [ 39 , 47 , 55 , 64 , 75 , 76 , 77 , 78 , 94 ] while eight (38%) also analysed data by ethnicity [ 31 , 35 , 104 , 108 , 109 , 113 , 114 , 116 ]. Of the remaining reports, three (14%) included other populations within Scotland [ 27 , 111 , 120 ] and one (5%) included other characteristics in addition to health information [ 135 ]. Ten reports (48%) were also categorised to another SAAP area; one to area 2 [ 47 ], one to area 3 [ 27 ], four to area 5 [ 47 , 57 , 77 , 135 ], two to area 6 [ 111 , 120 ] and two to area 9 [ 31 , 108 ].

5. Strengthening health systems and their resilience

Twenty-nine reports were assigned to SAAP area 5 (see Fig.  4 ) [ 18 , 47 , 48 , 49 , 54 , 57 , 63 , 69 , 70 , 72 , 77 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 , 103 , 118 , 119 , 126 , 129 , 131 , 133 , 135 , 141 ] of which 23 (79%) used qualitative research methods. Three reports used quantitative methods (10.3%) and the remaining three used mixed methods (10.3%). Twelve reports (41%) examined migrants needs and experiences of health care [ 47 , 49 , 54 , 57 , 58 , 77 , 83 , 95 , 103 , 119 , 129 , 135 ], eight (24%) focused on pregnancy and childcare [ 63 , 70 , 92 , 96 , 97 , 99 , 101 , 118 ] and two (7%) on barriers to healthcare access [ 48 , 131 ]. Two reports (7%) evaluated healthcare programmes [ 72 , 133 ] and two focused on communication in primary care [ 79 ] and maternity services [ 69 ]. The remaining three reports (10%) covered sexual health [ 82 ], health information needs of Syrian refugees [ 126 ] and general practitioner training [ 18 ]. Nineteen (65.5%) were peer reviewed journals [ 18 , 48 , 49 , 58 , 69 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 , 118 , 119 , 125 , 131 , 133 ] and ten (34.5%) were grey literature [ 47 , 54 , 57 , 63 , 70 , 72 , 77 , 103 , 129 , 135 ]. Twenty-one (72%) had a primary focus on migrant health [ 18 , 47 , 48 , 49 , 54 , 57 , 58 , 63 , 69 , 70 , 72 , 77 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 ]. Six reports (21%) included research on other characteristics or services [ 103 , 126 , 129 , 131 , 133 , 135 ]. The remaining two reports (7%) included ethnic groups as well as migrants in the data [ 118 , 119 ]. Nineteen reports (65.5%) were also assigned to one or more other category areas: five reports (17%) to area 1 [ 47 , 70 , 72 , 103 , 129 ], five reports (17%) to area 2 [ 54 , 63 , 83 , 103 , 129 ], three reports (10%) to area 3 [ 63 , 82 , 92 ], four reports (14%) to area 4 [ 47 , 57 , 77 , 135 ], one (3.5%) to area 7 [ 119 ] and one (3.5%) to area 9 [ 48 ].

6. Preventing communicable diseases

Fourteen reports were assigned to SAAP area 6 (see Fig.  4 ) [ 56 , 61 , 87 , 88 , 89 , 90 , 105 , 106 , 107 , 111 , 115 , 117 , 120 , 122 ] of which four (31%) used quantitative methods, five (38%) used qualitative methods and five (38%) used mixed methods. Five reports (38.5%) examined immunisation behaviour [ 56 , 61 , 89 , 90 , 117 ], five (38%) on epidemiology and treatment of HIV [ 106 , 107 , 111 , 120 , 122 ]. The remaining four reports (31%) focused on tuberculosis in healthcare workers [ 115 ], malaria [ 105 ] and sexual health services [ 87 , 88 ]. Only one reports was grey literature [ 88 ], the remainder were peer-reviewed journals. Six reports (46%) had a primary focus on migrant health [ 56 , 61 , 87 , 88 , 89 , 90 ] while seven reports (54%) also included other at-risk groups in the analysis. Four reports (31%) were also assigned to another SAAP category, two (15%) to area 4 [ 111 , 120 ] and two (15%) to area 8 [ 88 , 115 ].

7. Preventing and reducing the risks posed by non-communicable diseases

Eight reports were categorised to SAAP area 7 (see Fig.  4 ) [ 46 , 51 , 59 , 84 , 85 , 86 , 98 , 119 ] of which six (75%) used qualitative research methods, one (12.5%) used quantitative methods and one (12.5%) used mixed methods. Only one report (12.5%) was grey literature [ 59 ] the remaining seven reports (87.5%) were peer-reviewed journals [ 48 , 87 , 92 , 126 , 127 , 128 , 140 ]. Three reports (37.5%) focused on health behaviours [ 51 , 85 , 98 ], two (25%) on mental health, two (25%) on diabetes and one (12.5%) on chronic disease. Seven reports(87.5%) had a primary focus on migrant health [ 46 , 51 , 59 , 84 , 85 , 86 , 98 ], with the remaining report (12.5%) including ethnic minority groups [ 119 ]. One report (12.5%) was also assigned to SAAP area number 5 [ 119 ].

8. Ensuring ethical and effective health screening and assessment

There were six reports assigned to category 8 (see Fig.  4 ) [ 53 , 88 , 100 , 110 , 115 , 121 ] of which two (33%) used a quantitative research method, three (50%) used a qualitative method and one used mixed methods. One report (14%) was grey literature [ 88 ] the remaining five reports (83%) were peer reviewed journals [ 53 , 100 , 110 , 115 , 121 ]. Three reports (50%) focused on cancer screening in migrant women [ 21 , 100 , 110 ], one (17%) analysed access to HIV testing among African migrants [ 53 ], one (17%) on T.B in healthcare workers [ 72 ] and one (17%) on sexual health [ 36 ]. Three reports (50%) had a primary focus on migrant health [ 53 , 88 , 100 ] while the remaining three reports (50%) included other at-risk groups in the analysis [ 110 , 115 , 121 ]. There were three reports which overlapped with other SAAP areas: one [ 53 ] (17%) was categorised to area 2 while two [ 88 , 115 ] (33%) were categorised to area 6.

9. Improving health information and communication

Three reports were assigned to SAAP area 9 (see Fig.  4 ) [ 31 , 108 , 130 ]. One of these (33%) used a qualitative approach, one (33%) used a quantitative approach and one (33%) used mixed methods. Two [ 108 , 130 ] (66%) were peer-reviewed journal articles and one [ 31 ] (33%) was grey literature. Two reports (66%) focused on improving migrant demographics and health information using databases [ 31 , 108 ] while one (33%) described an information-needs matrix for refugees and asylum seekers [ 130 ]. Two [ 31 , 108 ] included ethnicities in the data while one [ 130 ] had a primary focus on migrant health. Two reports [ 31 , 108 ] (66%) also applied to SAAP area 4 while one report [ 130 ] (33%) was in SAAP area 9 only.

To our knowledge this is the first scoping review conducted on migrant health in Scotland. A previous rapid literature review [ 94 ] found most research focused on health behaviours, mental health, communicable disease and use of and access to healthcare; however, the review limited migrant definition to those who had immigrated within five years and asylum seekers were not included.

In our review, the majority of reports were published from 2013 onwards, aligning with the expansion in migrant research internationally [ 142 ]. 52% used qualitative research methods, 28% used quantitative methods and 20% used mixed methods. 58% focused on migrant health: the remaining papers included other populations or health as part of a wider remit. Research funding was mostly provided by the Scottish Government, NHS, refugee charities and Universities. No studies received funding from the private sector, although this sector has the potential resource and capacity to play a key role in funding future research to improve migrant health in Scotland. Geographically, most studies took place in Glasgow (36%), nationwide (38.5%) or Edinburgh (16%) – other areas were under-represented including Aberdeen (5%), despite being the city with the largest migrant population [ 30 ]. There was a lack of studies in rural localities. These findings concur with a UK migrant health review by Burns et al. [ 23 ] where research was concentrated in larger cities and data was sparse in rural areas relative to the migrant population.

Half of the research identified that was conducted in Glasgow focused on asylum seekers/refugees. Glasgow was previously the only Scottish city to host asylum seekers [ 143 ] and currently supports the most asylum seekers of any local authority in the UK [ 29 ]. In April 2022, the UK government widened the Asylum dispersal scheme to all local authorities [ 144 ]. Around 70% of Scotland’s refugee support services are based in Glasgow and the South-west [ 145 ]. As reduced access to services may impact the health of asylum seekers, research in Glasgow may not be generalizable to other regions of Scotland.

Almost one-third (30%) of all reports focused on asylum seekers and refugees – an overrepresentation given that only 18% of migrants to the UK are asylum seekers [ 146 ] and as low as 2% of all migrants in Scotland [ 147 ]. Asylum seekers and refugees are at risk of poor health due to trauma, difficult journeys, overcrowded camps, poor nutrition and lack of access to healthcare [ 148 ]. They have worse maternity outcomes and increased rates of mental illness [ 149 ]. Increased research on health of asylum seekers and refugees is necessary due to their additional vulnerabilities [ 142 ]. However, asylum seeker’s country of origin was generally not specified. Asylum seekers have heterogenic backgrounds [ 150 ] and nationality and trauma experience affect health status [ 151 ]. Further research focused on specific nationalities of asylum seekers would enhance understanding of the health needs in this population.

Almost one-third (31%) of studies did not specify a migrant group. This concurs with a Norwegian migrant health study by Laue et al. [ 152 ] where 36% of research did not identify country of birth. Where nationality was identified, Polish, African and South Asian were most prevalent. Poles are the largest migrant group in Scotland, however for the other most common immigrant groups of Irish, Italian and Nigerian [ 30 ] there was an absence of research. No studies took place on Nigerian migrants – nine studies indicated African populations, but country of birth was not specified. Since March 2022, 23,000 Ukrainians have migrated to Scotland [ 153 ], however no studies on Ukrainians were identified currently. Research may be underway which is yet to be published.

Only one study explored the impact of Brexit on European migrants’ health despite 56% of migrants to Scotland being EU nationals [ 30 ]. Again, research may be taking place currently, which is yet to be published. No studies involved undocumented migrants despite this populations’ high rates of poor physical/mental health exacerbated by poor housing and working conditions [ 154 ]. An estimated 7.2–9.5% of the workforce in the UK are migrant workers who have higher risks of poor working conditions and injury [ 155 ]. Scotland depends on a migrant workforce for some industries such as agriculture [ 156 ] but only two research papers specified migrant workers.

Most research papers related to the right to health of refugees (SAAP 2), social determinants of health (SAAP 3), public health planning (SAAP 4) and strengthening health systems (SAAP 5). Areas with less research were frameworks for collaborative action (SAAP 1), preventing communicable disease (SAAP 6), preventing non-communicable disease (SAAP 7) and health screening and assessment (SAAP 8). Only three studies related to improving health information and communication (SAAP 9). Lebano et al. [ 12 ] conducted a literature review of migrant health in Europe and found data collection unreliable and disorganised. There is a lack of data on the numbers and types of migrants entering Scotland and research tends not to differentiate between ethnic minorities and migrants [ 94 ]. As poor-quality information hinders surveillance and planning of services SAAP area 9 is an important consideration for increased research.

Villarroel et al. [ 24 ] also found more research in SAAP areas 3 to 5 and less in areas 6 to 9. However, their study returned no results in category 1, collaborative action, or 2, the right to health of refugees, while this study assigned 9% of articles to category 1 and 19% to category 2. Most articles in our study relating to categories 1 and 2 were grey literature, which was excluded from the original Irish scoping review. This highlights a potential difference in the focus of peer-reviewed articles compared to government/refugee charity commissioned reports. Collaborative action and the right to health of refugees and asylum seekers are entwined in Scotland due to the complex policy environment; the social determinants of health such as housing, education, welfare rights and social integration are influenced by a variety of UK and Scottish statutory bodies as well as third sector organisations [ 157 ]. Despite this complexity, organisations work well together [ 158 ]. Further academic research in this area would enhance joint working practices and networks.

A scoping review in the UK [ 23 ] found similar quantities of research corresponding to SAAP areas 3, 2 and 9. However in Scotland areas 1, 5 and 8 were a combined 44% of included papers compared with 27.8% of results on health systems and structures in Burns et al’s [ 23 ] study. Almost half of the articles in SAAP areas 1,5 and 8 were grey literature, which was not included in Burns et al’s [ 23 ] review. Conversely, Burns et al. [ 23 ] found 81.9% of research in the UK related to epidemiology, equivalent to SAAP categories 4,6 and 7. In a Norwegian scoping review of migrant health [ 152 ] 65% of research was related to epidemiological data on health and disease. Only 42% of the research in this current study related to epidemiological data; the quantity of evidence was reduced by excluding combined research from the UK. As Scotland has higher mortality and morbidity than elsewhere in the UK [ 29 ] it is important to undertake further epidemiological research limited to Scotland.

Strengths and weaknesses

Strengths of this review include the use of the WHO’s SAAP categories [ 7 ] to classify data, in accordance with the Villarroel et al’s [ 24 ] study: this means results are linked to policy on migrant health and facilitates comparability to the Irish study results. Additionally results include data on migrant groups, locality, and funding of included papers; these highlight potential omissions for future research consideration. Results include diverse research methods and published and grey literature giving a wide overview of available evidence, reported using the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) checklist (see Additional File 3 ) [ 159 ].

Limitations included the lack of an open-access protocol and search limitations of English language and selected databases. This means some relevant reports may be omitted. Due to time and resource limitations no quality appraisal was planned for included reports. Whilst we did not synthesise the findings for each topic area and migrant group, future systematic reviews could be undertaken to address this limitation and build on this work.

Conclusions

Immigration and ethnic diversity in Scotland have increased since 2002 which is reflected in the expansion of migrant health research. This review highlights evidence gaps including a lack of research in rural areas, undocumented migrants and migrant workers. There is a tendency to cluster asylum seekers together rather than differentiate between national groups. Within the SAAP areas there is less evidence relating to collaborative action, preventing communicable disease, preventing non-communicable disease and health screening and assessment. Further research is required on improving health information and communication for migrant populations in Scotland – a significant omission given the importance of accurate information for health service planning.

Availability of data and materials

All data analysed during this review comes from the papers listed in Additional file 2 .

Abbreviations

European Union

Human Immunodeficiency Virus

National Health Service

Strategy and Action Plan

The Scottish Health and Ethnicity Linkage Study

United Kingdom

World Health Organisation

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Acknowledgements

Thank-you to Professor Anne MacFarlane and PHD student Anne Cronin, of the University of Limerick, Ireland for sharing the coding guidelines currently used in an update to Villarroel et. al’s 2019 study on Migrant Health in the Republic of Ireland.

No funding was received for this work, which was undertaken as G. Petrie’s Master of Public Health dissertation module at the University of Stirling.

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Petrie, G., Angus, K. & O’Donnell, R. A scoping review of academic and grey literature on migrant health research conducted in Scotland. BMC Public Health 24 , 1156 (2024). https://doi.org/10.1186/s12889-024-18628-1

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Ten Simple Rules for Writing a Literature Review

* E-mail: [email protected]

Affiliations Centre for Functional and Evolutionary Ecology (CEFE), CNRS, Montpellier, France, Centre for Biodiversity Synthesis and Analysis (CESAB), FRB, Aix-en-Provence, France

• Marco Pautasso

Published: July 18, 2013

• https://doi.org/10.1371/journal.pcbi.1003149
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Citation: Pautasso M (2013) Ten Simple Rules for Writing a Literature Review. PLoS Comput Biol 9(7): e1003149. https://doi.org/10.1371/journal.pcbi.1003149

Editor: Philip E. Bourne, University of California San Diego, United States of America

Copyright: © 2013 Marco Pautasso. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: This work was funded by the French Foundation for Research on Biodiversity (FRB) through its Centre for Synthesis and Analysis of Biodiversity data (CESAB), as part of the NETSEED research project. The funders had no role in the preparation of the manuscript.

Competing interests: The author has declared that no competing interests exist.

Literature reviews are in great demand in most scientific fields. Their need stems from the ever-increasing output of scientific publications [1] . For example, compared to 1991, in 2008 three, eight, and forty times more papers were indexed in Web of Science on malaria, obesity, and biodiversity, respectively [2] . Given such mountains of papers, scientists cannot be expected to examine in detail every single new paper relevant to their interests [3] . Thus, it is both advantageous and necessary to rely on regular summaries of the recent literature. Although recognition for scientists mainly comes from primary research, timely literature reviews can lead to new synthetic insights and are often widely read [4] . For such summaries to be useful, however, they need to be compiled in a professional way [5] .

When starting from scratch, reviewing the literature can require a titanic amount of work. That is why researchers who have spent their career working on a certain research issue are in a perfect position to review that literature. Some graduate schools are now offering courses in reviewing the literature, given that most research students start their project by producing an overview of what has already been done on their research issue [6] . However, it is likely that most scientists have not thought in detail about how to approach and carry out a literature review.

Reviewing the literature requires the ability to juggle multiple tasks, from finding and evaluating relevant material to synthesising information from various sources, from critical thinking to paraphrasing, evaluating, and citation skills [7] . In this contribution, I share ten simple rules I learned working on about 25 literature reviews as a PhD and postdoctoral student. Ideas and insights also come from discussions with coauthors and colleagues, as well as feedback from reviewers and editors.

Rule 1: Define a Topic and Audience

How to choose which topic to review? There are so many issues in contemporary science that you could spend a lifetime of attending conferences and reading the literature just pondering what to review. On the one hand, if you take several years to choose, several other people may have had the same idea in the meantime. On the other hand, only a well-considered topic is likely to lead to a brilliant literature review [8] . The topic must at least be:

• interesting to you (ideally, you should have come across a series of recent papers related to your line of work that call for a critical summary),
• an important aspect of the field (so that many readers will be interested in the review and there will be enough material to write it), and
• a well-defined issue (otherwise you could potentially include thousands of publications, which would make the review unhelpful).

Ideas for potential reviews may come from papers providing lists of key research questions to be answered [9] , but also from serendipitous moments during desultory reading and discussions. In addition to choosing your topic, you should also select a target audience. In many cases, the topic (e.g., web services in computational biology) will automatically define an audience (e.g., computational biologists), but that same topic may also be of interest to neighbouring fields (e.g., computer science, biology, etc.).

Rule 2: Search and Re-search the Literature

After having chosen your topic and audience, start by checking the literature and downloading relevant papers. Five pieces of advice here:

• keep track of the search items you use (so that your search can be replicated [10] ),
• keep a list of papers whose pdfs you cannot access immediately (so as to retrieve them later with alternative strategies),
• use a paper management system (e.g., Mendeley, Papers, Qiqqa, Sente),
• define early in the process some criteria for exclusion of irrelevant papers (these criteria can then be described in the review to help define its scope), and
• do not just look for research papers in the area you wish to review, but also seek previous reviews.

The chances are high that someone will already have published a literature review ( Figure 1 ), if not exactly on the issue you are planning to tackle, at least on a related topic. If there are already a few or several reviews of the literature on your issue, my advice is not to give up, but to carry on with your own literature review,

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The bottom-right situation (many literature reviews but few research papers) is not just a theoretical situation; it applies, for example, to the study of the impacts of climate change on plant diseases, where there appear to be more literature reviews than research studies [33] .

https://doi.org/10.1371/journal.pcbi.1003149.g001

• discussing in your review the approaches, limitations, and conclusions of past reviews,
• trying to find a new angle that has not been covered adequately in the previous reviews, and
• incorporating new material that has inevitably accumulated since their appearance.

When searching the literature for pertinent papers and reviews, the usual rules apply:

• be thorough,
• use different keywords and database sources (e.g., DBLP, Google Scholar, ISI Proceedings, JSTOR Search, Medline, Scopus, Web of Science), and
• look at who has cited past relevant papers and book chapters.

Rule 3: Take Notes While Reading

If you read the papers first, and only afterwards start writing the review, you will need a very good memory to remember who wrote what, and what your impressions and associations were while reading each single paper. My advice is, while reading, to start writing down interesting pieces of information, insights about how to organize the review, and thoughts on what to write. This way, by the time you have read the literature you selected, you will already have a rough draft of the review.

Of course, this draft will still need much rewriting, restructuring, and rethinking to obtain a text with a coherent argument [11] , but you will have avoided the danger posed by staring at a blank document. Be careful when taking notes to use quotation marks if you are provisionally copying verbatim from the literature. It is advisable then to reformulate such quotes with your own words in the final draft. It is important to be careful in noting the references already at this stage, so as to avoid misattributions. Using referencing software from the very beginning of your endeavour will save you time.

Rule 4: Choose the Type of Review You Wish to Write

After having taken notes while reading the literature, you will have a rough idea of the amount of material available for the review. This is probably a good time to decide whether to go for a mini- or a full review. Some journals are now favouring the publication of rather short reviews focusing on the last few years, with a limit on the number of words and citations. A mini-review is not necessarily a minor review: it may well attract more attention from busy readers, although it will inevitably simplify some issues and leave out some relevant material due to space limitations. A full review will have the advantage of more freedom to cover in detail the complexities of a particular scientific development, but may then be left in the pile of the very important papers “to be read” by readers with little time to spare for major monographs.

There is probably a continuum between mini- and full reviews. The same point applies to the dichotomy of descriptive vs. integrative reviews. While descriptive reviews focus on the methodology, findings, and interpretation of each reviewed study, integrative reviews attempt to find common ideas and concepts from the reviewed material [12] . A similar distinction exists between narrative and systematic reviews: while narrative reviews are qualitative, systematic reviews attempt to test a hypothesis based on the published evidence, which is gathered using a predefined protocol to reduce bias [13] , [14] . When systematic reviews analyse quantitative results in a quantitative way, they become meta-analyses. The choice between different review types will have to be made on a case-by-case basis, depending not just on the nature of the material found and the preferences of the target journal(s), but also on the time available to write the review and the number of coauthors [15] .

Rule 5: Keep the Review Focused, but Make It of Broad Interest

Whether your plan is to write a mini- or a full review, it is good advice to keep it focused 16 , 17 . Including material just for the sake of it can easily lead to reviews that are trying to do too many things at once. The need to keep a review focused can be problematic for interdisciplinary reviews, where the aim is to bridge the gap between fields [18] . If you are writing a review on, for example, how epidemiological approaches are used in modelling the spread of ideas, you may be inclined to include material from both parent fields, epidemiology and the study of cultural diffusion. This may be necessary to some extent, but in this case a focused review would only deal in detail with those studies at the interface between epidemiology and the spread of ideas.

While focus is an important feature of a successful review, this requirement has to be balanced with the need to make the review relevant to a broad audience. This square may be circled by discussing the wider implications of the reviewed topic for other disciplines.

Rule 6: Be Critical and Consistent

Reviewing the literature is not stamp collecting. A good review does not just summarize the literature, but discusses it critically, identifies methodological problems, and points out research gaps [19] . After having read a review of the literature, a reader should have a rough idea of:

• the major achievements in the reviewed field,
• the main areas of debate, and
• the outstanding research questions.

It is challenging to achieve a successful review on all these fronts. A solution can be to involve a set of complementary coauthors: some people are excellent at mapping what has been achieved, some others are very good at identifying dark clouds on the horizon, and some have instead a knack at predicting where solutions are going to come from. If your journal club has exactly this sort of team, then you should definitely write a review of the literature! In addition to critical thinking, a literature review needs consistency, for example in the choice of passive vs. active voice and present vs. past tense.

Rule 7: Find a Logical Structure

Like a well-baked cake, a good review has a number of telling features: it is worth the reader's time, timely, systematic, well written, focused, and critical. It also needs a good structure. With reviews, the usual subdivision of research papers into introduction, methods, results, and discussion does not work or is rarely used. However, a general introduction of the context and, toward the end, a recapitulation of the main points covered and take-home messages make sense also in the case of reviews. For systematic reviews, there is a trend towards including information about how the literature was searched (database, keywords, time limits) [20] .

How can you organize the flow of the main body of the review so that the reader will be drawn into and guided through it? It is generally helpful to draw a conceptual scheme of the review, e.g., with mind-mapping techniques. Such diagrams can help recognize a logical way to order and link the various sections of a review [21] . This is the case not just at the writing stage, but also for readers if the diagram is included in the review as a figure. A careful selection of diagrams and figures relevant to the reviewed topic can be very helpful to structure the text too [22] .

Rule 8: Make Use of Feedback

Reviews of the literature are normally peer-reviewed in the same way as research papers, and rightly so [23] . As a rule, incorporating feedback from reviewers greatly helps improve a review draft. Having read the review with a fresh mind, reviewers may spot inaccuracies, inconsistencies, and ambiguities that had not been noticed by the writers due to rereading the typescript too many times. It is however advisable to reread the draft one more time before submission, as a last-minute correction of typos, leaps, and muddled sentences may enable the reviewers to focus on providing advice on the content rather than the form.

Feedback is vital to writing a good review, and should be sought from a variety of colleagues, so as to obtain a diversity of views on the draft. This may lead in some cases to conflicting views on the merits of the paper, and on how to improve it, but such a situation is better than the absence of feedback. A diversity of feedback perspectives on a literature review can help identify where the consensus view stands in the landscape of the current scientific understanding of an issue [24] .

Rule 9: Include Your Own Relevant Research, but Be Objective

In many cases, reviewers of the literature will have published studies relevant to the review they are writing. This could create a conflict of interest: how can reviewers report objectively on their own work [25] ? Some scientists may be overly enthusiastic about what they have published, and thus risk giving too much importance to their own findings in the review. However, bias could also occur in the other direction: some scientists may be unduly dismissive of their own achievements, so that they will tend to downplay their contribution (if any) to a field when reviewing it.

In general, a review of the literature should neither be a public relations brochure nor an exercise in competitive self-denial. If a reviewer is up to the job of producing a well-organized and methodical review, which flows well and provides a service to the readership, then it should be possible to be objective in reviewing one's own relevant findings. In reviews written by multiple authors, this may be achieved by assigning the review of the results of a coauthor to different coauthors.

Rule 10: Be Up-to-Date, but Do Not Forget Older Studies

Given the progressive acceleration in the publication of scientific papers, today's reviews of the literature need awareness not just of the overall direction and achievements of a field of inquiry, but also of the latest studies, so as not to become out-of-date before they have been published. Ideally, a literature review should not identify as a major research gap an issue that has just been addressed in a series of papers in press (the same applies, of course, to older, overlooked studies (“sleeping beauties” [26] )). This implies that literature reviewers would do well to keep an eye on electronic lists of papers in press, given that it can take months before these appear in scientific databases. Some reviews declare that they have scanned the literature up to a certain point in time, but given that peer review can be a rather lengthy process, a full search for newly appeared literature at the revision stage may be worthwhile. Assessing the contribution of papers that have just appeared is particularly challenging, because there is little perspective with which to gauge their significance and impact on further research and society.

Inevitably, new papers on the reviewed topic (including independently written literature reviews) will appear from all quarters after the review has been published, so that there may soon be the need for an updated review. But this is the nature of science [27] – [32] . I wish everybody good luck with writing a review of the literature.

Acknowledgments

Many thanks to M. Barbosa, K. Dehnen-Schmutz, T. Döring, D. Fontaneto, M. Garbelotto, O. Holdenrieder, M. Jeger, D. Lonsdale, A. MacLeod, P. Mills, M. Moslonka-Lefebvre, G. Stancanelli, P. Weisberg, and X. Xu for insights and discussions, and to P. Bourne, T. Matoni, and D. Smith for helpful comments on a previous draft.

• 1. Rapple C (2011) The role of the critical review article in alleviating information overload. Annual Reviews White Paper. Available: http://www.annualreviews.org/userimages/ContentEditor/1300384004941/Annual_Reviews_WhitePaper_Web_2011.pdf . Accessed May 2013.
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• 16. Eco U (1977) Come si fa una tesi di laurea. Milan: Bompiani.
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• Case report
• Open access
• Published: 25 April 2024

Idiopathic intracranial hypertension associated with SARS-CoV-2 infection in an adult male patient: a case report and review of the literature

• Gashaw Solela   ORCID: orcid.org/0000-0002-2233-9270 1 ,
• Addis A. Tenaw 1 ,
• Henok Fisseha 2 ,
• Abel M. Argaw 2 ,
• Tamirat Petros 2 &
• Betelhem Mengistu 3  

Journal of Medical Case Reports volume  18 , Article number:  206 ( 2024 ) Cite this article

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Headache is a frequent symptom in coronavirus disease 2019 (COVID-19) patients, and idiopathic intracranial hypertension (pseudotumor cerebri) has been reported among patients who underwent lumbar puncture for persistent headaches.

Case presentation

A 45-year-old black man presented with dyspnea, cough, fever and headache for 05 days followed by blurring of vision associated with worsening of the headache. Physical examination was significant for tachypnea and oxygen desaturation and there were no abnormal neurologic findings. He tested positive for SARS-CoV-2 with nasopharyngeal swab PCR. His CSF opening pressure appeared high with normal CSF analysis and brain magnetic resonance imaging (MRI) revealed prominent subarachnoid space around the optic nerves and bilateral papilledema. He had significant improvement with medical therapy alone.

Idiopathic intracranial hypertension (IIH) may occur in association with SARS-CoV-2 infection and should be considered when making a differential diagnosis for headache and blurring of vision. COVID-19 may play a role in the development of intracranial hypertension, even in the absence of known risk factors. Early diagnosis and treatment of IIH has paramount importance to prevent vision loss and other morbidities.

Peer Review reports

Coronavirus disease 2019 (COVID-19), caused by severe acute respiratory syndrome coronavirus type 2 (SARS-CoV-2), has been the main global public health concern since March 2020 [ 1 ]. Although respiratory conditions are the predominating manifestations of COVID-19, neurological disorders are also becoming more frequently reported. Well known neurologic disorders reported in COVID-19 include encephalitis, encephalopathy, cerebrovascular illness, and Guillain-Barré syndrome ( 2 ).

Patients with COVID-19 frequently complain of headaches, and idiopathic intracranial hypertension (IIH), also called as pseudotumor cerebri has been observed in those who had lumbar puncture for persistent headaches ( 3 ). Patients with various neurologic conditions associated with COVID-19 have also been reported to have elevated intracranial pressure, usually in a mild form ( 4 ).

Cases reports of IIH associated with COVID-19 have been rare and they are described mainly in children and limited number of adult female patients. To the best of our knowledge, this is the first adult male patient who developed idiopathic intracranial hypertension associated with COVID-19.

A 45-year-old black Ethiopian man presented to our COVID-19 isolation center with intermittent dry cough and dyspnea for 05 days associated with new onset mild holocranial headache, low grade fever, myalgia and arthralgia. One day after his admission to the center, he started to develop blurring of vision associated with worsening of the headache. He also had one episode of projectile vomiting of ingested matter. He had no known chronic medical illnesses and no history of drug intake including vitamin A derivatives and tetracycline before the onset of the aforementioned symptoms.

Physical examination revealed blood pressure of 127/91 mmHg, pulse rate of 98 beats per minute, respiratory rate of 28 breaths per minute, oxygen saturation of 86% without oxygen and 92% with 2 L/min intranasal oxygen and body mass index (BMI) of 22.8 kg/m 2 . He had bilateral coarse crepitation over his lower lung fields. He was conscious with Glasgow Coma Scale (GCS) of 15/15 and all the cranial nerves were intact with normal visual acuity (20/20) and visual fields. Meningeal signs were negative and there were no sensory or motor deficits.

Upon investigations, he tested positive for SARS-CoV-2 with nasopharyngeal swab polymerase chain reaction (PCR) and he had mild leukocytosis with left shift and lymphopenia. Lumbar puncture was performed after doing brain magnetic resonance imaging (MRI) and cerebrospinal fluid (CSF) opening pressure appeared high, though it was not measured. The other laboratory results were non-remarkable (Table  1 ).

Brain MRI revealed prominent subarachnoid space around the optic nerves and bilateral papilledema, but didn’t show any mass lesion, hemorrhage, or cerebrovascular lesion and brain magnetic resonance venography (MRV) was normal (Fig.  1 A and B). Chest x-ray revealed bilateral ground glass opacities mainly in the middle and lower lung zones with right side blunted costophrenic angle which was suggestive of COVID-19 pneumonia (Fig.  1 C).

T2 axial and sagittal brain MRI scan showed prominent subarachnoid space around the optic nerves ( A ) and flattening of pituitary gland ( B ). Chest X-ray showed bilateral ground glass opacities mainly in the middle and lower lung zones with right side blunted costophrenic angle ( C )

The patient initially received supportive therapies for severe COVID-19 infection including IV antibiotics, dexamethasone 6 mg IV daily, intranasal oxygen, and prophylactic dose of unfractionated heparin. Acetazolamide 250 mg three times daily was added after establishing the diagnosis of idiopathic intracranial hypertension. He was then followed clinically if he could have an indication for ventriculoperitoneal shunt but his headache and blurring of vision improved and he did not require any surgical intervention. He was finally discharged after 10 days of inpatient supportive medical treatment with significant improvement except occasional cough and mild headache. He did not have any complaint upon reevaluation on the second week of discharge and the acetazolamide was discontinued. He was then doing well throughout his follow up over 6 months in the outpatient department.

Coronavirus disease 2019 (COVID-19, caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), is clinically characterized by fever, myalgia, diarrhea, and respiratory illness ( 5 ). However, a number of neurological manifestations have been linked to COVID-19 in the literature, which can be divided into peripheral nervous system (PNS) manifestations like hyposmia/anosmia, hypogeusia/ageusia, myalgia, and Guillain–Barre syndrome and central nervous system (CNS) manifestations like headache, dizziness, impaired consciousness, acute cerebrovascular disease, and seizure disorders ( 6 , 7 ).

Only a small number of cases of idiopathic intracranial hypertension (IIH) linked to COVID-19 have been reported, the majority of which affected children ( 8 , 9 , 10 ). In one study made on 58 patients with distinct neurological conditions associated with COVID-19, cerebrospinal fluid (CSF) analysis revealed that CSF pressure was elevated in one-third of COVID-19 patients with different neurological conditions and all of these patients presented early with intracranial hypertension and none of them developed loss of vision ( 11 ). In line with the results of this study, our patient appeared to have high CSF opening pressure, though not measured; indicating high intracranial hypertension and he had blurring of vision which subsequently improved with acetazolamide.

Idiopathic intracranial hypertension (IIH) is still exceedingly uncommon with 12 to 20 cases per 100,000 persons per year and the main risk factors are obesity, female gender, and reproductive age ( 13 ). The idea that obesity is an inflammatory illness is growing and markers of inflammation were found in the CSF of individuals with idiopathic IHT ( 13 ). A case series of eight adult patients described an association between IIH and COVID-19 ( 14 ). All of these patients were women; many of them were obese; and most of them improved with medical therapy alone (Table  2 ). Unlike the patients described in this case series, our patient was male and non-obese, but similar to most of these cases, he improved with medical therapy alone.

The cause of IIH in COVID-19 is uncertain and debatable. According to one study, increased CSF pressure is linked to high levels of neurofilament light chain proteins, which may be an indication of an active and exaggerated inflammatory process ( 11 ). Cerebral venous sinus thrombosis (CVT), which has been observed in COVID-19 patients, is another mechanism linked to IIH ( 12 ).

There were two case reports of middle aged female patients who had idiopathic intracranial hypertension and visual loss associated with COVID-19. The first one was a 40-year-old obese female patient, who presented with headache, bilateral optic disc edema, and visual loss, which occurred two weeks after making the diagnosis of COVID-19. Her CSF opening pressure was 410 mmH 2 O, and cranial imaging was normal. Visual loss improved after initiation of accetazolamide 250 mg three times daily ( 15 ). The second case was a 49-year-old non-obese woman, who presented with headache and vision loss and found to have COVID-19. Upon further work ups, she was diagnosed to have COVID-19 related IIH, after which she treated with mannitol infusion and oral acetazolamide 250 mg twice daily and then the headache and visual loss got improved. However, she presented again with acute vision loss, which was managed by endoscopic optic nerve fenestration surgery and then she had a good recovery ( 16 ). Our patient had similar clinical manifestations with the aforementioned cases, though he was male by gender and he did not have severe degree of visual impairment. Besides, he had remarkable improvement with medical treatment (acetazolamide) alone like that of the first case ( 16 ).

Our patient was male and had none of the aforementioned risk factors for IIH like obesity and CVT implying that SARS-CoV-2 infection could be the sole culprit in the development of IIH. To the best of our knowledge, all of the cases reported to have IIH associated with COVID-19 were women and most of them were obese and we reported the first male patient with a case of idiopathic intracranial hypertension (IIH) following COVID-19 infection.

Idiopathic intracranial hypertension (IIH) may occur in association with SARS-CoV-2 infection and should be kept in mind when making a differential diagnosis for headache and blurring of vision. COVID-19 may play a role in the development of intracranial hypertension, even in the absence of known risk factors. Early diagnosis and treatment of IIH has paramount importance to prevent vision loss and other morbidities.

Data availability statement

Data supporting this case report will be available with the corresponding author upon reasonable request.

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Solela, G., Tenaw, A.A., Fisseha, H. et al. Idiopathic intracranial hypertension associated with SARS-CoV-2 infection in an adult male patient: a case report and review of the literature. J Med Case Reports 18 , 206 (2024). https://doi.org/10.1186/s13256-024-04519-x

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• Volume 33, Issue 5
• Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review
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• http://orcid.org/0000-0002-8498-7329 Manjekah Dunn 1 , 2 ,
• Iva Strnadová 3 , 4 , 5 ,
• Jackie Leach Scully 4 ,
• Jennifer Hansen 3 ,
• Julie Loblinzk 3 , 5 ,
• Skie Sarfaraz 5 ,
• Chloe Molnar 1 ,
• Elizabeth Emma Palmer 1 , 2
• 1 Faculty of Medicine & Health , University of New South Wales , Sydney , New South Wales , Australia
• 2 The Sydney Children's Hospitals Network , Sydney , New South Wales , Australia
• 3 School of Education , University of New South Wales , Sydney , New South Wales , Australia
• 4 Disability Innovation Institute , University of New South Wales , Sydney , New South Wales , Australia
• 5 Self Advocacy Sydney , Sydney , New South Wales , Australia
• Correspondence to Dr Manjekah Dunn, Paediatrics & Child Health, University of New South Wales Medicine & Health, Sydney, New South Wales, Australia; manjekah.dunn{at}unsw.edu.au

Objective To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.

Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals.

Eligibility criteria Peer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability.

Synthesis of results Inductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created.

Results Twenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals’ attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3).

Conclusions Multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability.

PROSPERO registration CRD42021290548.

• Decision making
• Healthcare quality improvement
• Patient-centred care
• Quality improvement
• Standards of care

Data availability statement

Data are available upon reasonable request. Additional data and materials such as data collection forms, data extraction and analysis templates and QualSyst assessment data can be obtained by contacting the corresponding author.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjqs-2023-016113

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What is already known on this topic

People with intellectual disability are frequently excluded from decision-making processes and not provided equal opportunity for informed consent, despite protections outlined in the United Nations Convention on the Rights of Persons with Disabilities.

People with intellectual disability have the capacity and desire to make informed medical decisions, which can improve their well-being, health satisfaction and health outcomes.

What this review study adds

Health professionals lack adequate training in valid informed consent and making reasonable adjustments for people with intellectual disability, and continue to perpetuate assumptions of incapacity.

Health information provided to people with intellectual disability is often inaccessible and insufficient for them to make informed decisions about healthcare.

The role of support people, systemic constraints, a person-centred approach and ineffective healthcare communication also affect informed consent.

How this review might affect research, practice or policy

Health professionals need additional training on how to provide a valid informed consent process for people with intellectual disability, specifically in using accessible health information, making reasonable adjustments (e.g., longer/multiple appointments, options of a support person attending or not, using plain English), involving the individual in discussions, and communicating effectively with them.

Inclusive research is needed to hear the voices and opinions of people with intellectual disability about healthcare decision-making and about informed consent practices in specific healthcare settings.

Introduction

Approximately 1% of the world’s population have intellectual disability. 1 Intellectual disability is medically defined as a group of neurodevelopmental conditions beginning in childhood, with below average cognitive functioning and adaptive behaviour, including limitations in conceptual, social and practical skills. 2 People with intellectual disability prefer an alternative strength-based definition, reflected in the comment by Robert Strike OAM (Order of Australia Medal): ‘We can learn if the way of teaching matches how the person learns’, 3 reinforcing the importance of providing information tailored to the needs of a person with intellectual disability. A diagnosis of intellectual disability is associated with significant disparities in health outcomes. 4–7 Person-centred decision-making and better communication have been shown to improve patient satisfaction, 8 9 the physician–patient relationship 10 and overall health outcomes 11 for the wider population. Ensuring people with intellectual disability experience informed decision-making and accessible healthcare can help address the ongoing health disparities and facilitate equal access to healthcare.

Bodily autonomy is an individual’s power and agency to make decisions about their own body. 12 Informed consent for healthcare enables a person to practice bodily autonomy and is protected, for example, by the National Safety and Quality Health Service Standards (Australia), 13 Mental Capacity Act (UK) 14 and the Joint Commission Standards (USA). 15 In this article, we define informed consent according to three requirements: (1) the person is provided with information they understand, (2) the decision is free of coercion and (3) the person must have capacity. 16 For informed consent to be valid, this process must be suited to the individual’s needs so that they can understand and communicate effectively. Capacity is the ability to give informed consent for a medical intervention, 17 18 and the Mental Capacity Act outlines that ‘a person must be assumed to have capacity unless it is established that he lacks capacity’ and that incapacity can only be established if ‘all practicable steps’ to support capacity have been attempted without success. 14 These assumptions of capacity are also decision-specific, meaning an individual’s ability to consent can change depending on the situation, the choice itself and other factors. 17

Systemic issues with healthcare delivery systems have resulted in access barriers for people with intellectual disability, 19 despite the disability discrimination legislation in many countries who are signatories to the United Nations (UN) Convention on the Rights of Persons with Disabilities. 20 Patients with intellectual disability are not provided the reasonable adjustments that would enable them to give informed consent for medical procedures or interventions, 21 22 despite evidence that many people with intellectual disability have both the capacity and the desire to make their own healthcare decisions. 21 23

To support people with intellectual disability to make independent health decisions, an equitable and accessible informed consent process is needed. 24 However, current health systems have consistently failed to provide this. 21 25 To address this gap, we must first understand the factors that contribute to inequitable and inaccessible consent. To the best of our knowledge, the only current review of informed consent for people with intellectual disability is an integrative review by Goldsmith et al . 26 Many of the included articles focused on assessment of capacity 27–29 and research consent. 30–32 The review’s conclusion supported the functional approach to assess capacity, with minimal focus on how the informed consent processes can be improved. More recently, there has been a move towards ensuring that the consent process is accessible for all individuals, including elderly patients 33 and people with aphasia. 34 However, there remains a paucity of literature about the informed consent process for people with intellectual disability, with no systematic reviews summarising the factors influencing the healthcare consent process for people with intellectual disability.

To identify barriers to and enablers of the informed healthcare consent process for people with intellectual disability, and to understand how this can be made equitable and accessible.

A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) systematic literature review protocol. 35 The PRISMA 2020 checklist 36 and ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ) reporting guidelines were also followed. 37 The full study protocol is included in online supplemental appendix 1 .

Supplemental material

No patients or members of the public were involved in this research for this manuscript.

Search strategy

A search strategy was developed to identify articles about intellectual disability, consent and healthcare interventions, described in online supplemental appendix 2 . Multiple databases were searched for articles published between January 1990 to January 2022 (Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL). These databases include healthcare and psychology databases that best capture relevant literature on this topic, including medical, nursing, social sciences and bioethical literature. The search was limited to studies published from 1990 as understandings of consent have changed since then. 38 39 This yielded 4853 unique papers which were imported into Covidence, a specialised programme for conducting systematic reviews. 40

Study selection

Citation screening by abstract and titles was completed by two independent researchers (MD and EEP). Included articles had to:

Examine the informed consent process for a healthcare intervention for people with intellectual disability.

Have collected more than 50% of its data from relevant stakeholders, including adults with intellectual disability, families or carers of a person with intellectual disability, and professionals who engage with people with intellectual disability.

Report empirical data from primary research methodology.

Be published in a peer-reviewed journal after January 1990.

Be available in English.

Full text screening was completed by two independent researchers (MD and EEP). Articles were excluded if consent was only briefly discussed or if it focused on consent for research, capacity assessment, or participant knowledge or comprehension. Any conflicts were resolved through discussion with an independent third researcher (IS).

Additional studies were identified through an ancestral search and by hand-searching three major journals relevant to intellectual disability research. Journals were selected if they had published more than one included article for this review or in previous literature reviews conducted by the research team.

Quality assessment

Two independent researchers (MD and IS) assessed study quality with the QualSyst tool, 41 which can assess both qualitative and quantitative research papers. After evaluating the distribution of scores, a threshold value of 55% was used, as suggested by QualSyst 41 to exclude poor-quality studies but capture enough studies overall. Any conflicts between the quality assessment scores were resolved by a third researcher (EEP). For mixed-method studies, both qualitative and quantitative quality scores were calculated, and the higher value used.

Data collection

Two independent researchers (MD and JH) reviewed each study and extracted relevant details, including study size, participant demographics, year, country of publication, study design, data analysis and major outcomes reported. Researchers used standardised data collection forms designed, with input from senior researchers with expertise in qualitative research (IS and EEP), to extract data relevant to the review’s research aims. The form was piloted on one study, and a second iteration made based on feedback. These forms captured data on study design, methods, participants, any factors affecting the process of informed consent and study limitations. Data included descriptions and paragraphs outlining key findings, the healthcare context, verbatim participant quotes and any quantitative analyses or statistics. Missing or unclear data were noted.

Data analysis

A pilot literature search showed significant heterogeneity in methodology of studies, limiting the applicability of traditional quantitative analysis (ie, meta-analysis). Instead, inductive thematic analysis was chosen as an alternative methodology 42 43 that has been used in recent systematic reviews examining barriers and enablers of other health processes. 44 45 The six-phase approach described by Braun and Clarke was used. 46 47 A researcher (MD) independently coded the extracted data of each study line-by-line, with subsequent data grouped into pre-existing codes or new concepts when necessary. Codes were reviewed iteratively and grouped into categories, subthemes and themes framed around the research question. Another independent researcher (JH) collated and analysed the data on study demographics, methods and limitations. The themes were reviewed by two senior researchers (EEP and IS).

Qualitative methods of effect size calculations have been described in the literature, 48 49 which was captured in this review by the number of studies that identified each subtheme, with an assigned frequency rating to compare their relative significance. Subthemes were given a frequency rating of A, B, C or D if they were identified by >10, 7–9, 4–6 or <3 articles, respectively. The overall significance of each theme was estimated by the number of studies that mentioned it and the GRADE framework, a stepwise approach to quality assessment using a four-tier rating system. Each study was evaluated for risk of bias, inconsistency, indirectness, imprecision and publication bias. 50 51 Study sensitivity was assessed by counting the number of distinct subthemes included. 52 The quality of findings was designated high, moderate or low depending on the frequency ratings, the QualSyst score and the GRADE scores of studies supporting the finding. Finally, the relative contributions of each study were evaluated by the number of subthemes described, guided by previously reported methods for qualitative reviews. 52

Co-research

The findings were reviewed by two co-researchers with intellectual disability (JL and SS), with over 30 years combined experience as members and employees of a self-advocacy organisation. Guidance on the findings and an easy read summary was produced in line with best-practice inclusive research 53 54 over multiple discussions. Input from two health professional researchers (MD and EEP) provided data triangulation and sense-checking of findings.

Twenty-three articles were identified ( figure 1 ): 14 qualitative, 6 quantitative and 3 mixed-methods. Two papers included the same population of study participants: McCarthy 55 and McCarthy, 56 but had different research questions. Fovargue et al 57 was excluded due to a quality score of 35%. Common quality limitations were a lack of verification procedures to establish credibility and limited researcher reflexivity. No studies were excluded due to language requirements (as all were in English) or age restrictions (all studies had majority adult participants).

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PRISMA 2020 flowchart for the systematic review. 36

Studies were published from 1999 to 2020 and involved participant populations from the UK (n=18), USA (n=3), Sweden (n=1) and Ireland (n=1). Participant numbers ranged from 9 to 604 (median 21), and participants included people with intellectual disability (n=817), health professionals (n=272), carers and support people (n=48), and other professionals that work with people with intellectual disability (n=137, community service agency directors, social workers, administrative staff and care home staff). Ages of participants ranged from 8 to 84 years, though only Aman et al 58 included participants <18 years of age. This study was included as the article states very few children were included. Studies examined consent in different contexts, including contraception and sexual health (6/23 articles), 58–60 medications (5/23 articles), 58–62 emergency healthcare, 63 cervical screening, 64 community referrals, 58–61 65 mental health, 66 hydrotherapy, 64 blood collection 67 and broad decision-making consent without a specific context. 65 68–71 A detailed breakdown of each study is included in online supplemental appendix 3 .

Six major themes were identified from the studies, summarised in figure 2 . An overview of included studies showing study sensitivity, effect size, QualSyst and GRADE scores is given in online supplemental appendix 4 . Studies with higher QualSyst and GRADE scores contributed more to this review’s findings and tended to include more subthemes; specifically, Rogers et al , 66 Sowney and Barr, 63 Höglund and Larsson, 72 and McCarthy 55 and McCarthy. 56 Figure 3 gives the easy read version of theme 1, with the full easy read summary in online supplemental appendix 5 .

Summary of the identified six themes and subthemes.

Theme 1 of the easy read summary.

Theme 1—Health professionals’ attitudes and lack of education about informed consent

Health professionals’ attitudes and practices were frequently (18/21) identified as factors affecting the informed consent process, with substantial evidence supporting this theme. Studies noted the lack of training for health professionals in supporting informed consent for people with intellectual disability, their desire for further education, and stereotypes and discrimination perpetuated by health professionals.

Lack of health professional education on informed consent and disability discrimination legislation

Multiple studies reported inconsistent informed consent practices, for various reasons: some reported that health professionals ‘forgot’ to or ‘did not realise consent was necessary’, 63 73 but inconsistent consent practices were also attributed to healthcare providers’ unfamiliarity with consent guidelines and poor education on this topic. Carlson et al 73 reported that only 44% of general practitioners (GPs) were aware of consent guidelines, and there was the misconception that consent was unnecessary for people with intellectual disability. Similarly, studies of psychologists 66 and nurses 63 found that many were unfamiliar with their obligations to obtain consent, despite the existence of anti-discrimination legislation. People with intellectual disability describe feeling discriminated against by health professionals, reflected in comments such as ‘I can tell, my doctor just thinks I’m stupid – I'm nothing to him’. 74 Poor consent practices by health professionals were observed in Goldsmith et al , 67 while health professionals surveyed by McCarthy 56 were unaware of their responsibility to provide accessible health information to women with intellectual disability. Improving health professional education and training was suggested by multiple studies as a way to remove this barrier. 63 65–67 69 73

Lack of training on best practices for health professions caring for people with intellectual disability

A lack of training in caring for and communicating with people with intellectual disability was also described by midwives, 72 psychologists, 66 nurses, 63 pharmacists 61 and GPs. 56 72 75 Health professionals lacked knowledge about best practice approaches to providing equitable healthcare consent processes through reasonable adjustments such as accessible health information, 56 60 66 longer appointments times, 60 72 simple English 62 67 and flexible approaches to patient needs. 63 72

Health professionals’ stereotyping and assumptions of incapacity

Underlying stereotypes contributed to some health professionals’ (including nurses, 63 GPs 56 and physiotherapists 64 ) belief that people with intellectual disability lack capacity and therefore, do not require opportunities for informed consent. 56 64 In a survey of professionals referring people with intellectual disability to a disability service, the second most common reason for not obtaining consent was ‘patient unable to understand’. 73

Proxy consent as an inappropriate alternative

People with intellectual disability are rarely the final decision-maker in their medical choices, with many health providers seeking proxy consent from carers, support workers and family members, despite its legal invalidity. In McCarthy’s study (2010), 18/23 women with intellectual disability said the decision to start contraception was made by someone else. Many GPs appeared unaware that proxy consent is invalid in the UK. 56 Similar reports came from people with intellectual disability, 55 56 60 64 69 76 health professionals (nurses, doctors, allied health, psychologists), 56 63 64 66 77 support people 64 77 and non-medical professionals, 65 73 and capacity was rarely documented. 56 62 77

Exclusion of people with intellectual disability from decision-making discussions

Studies described instances where health professionals made decisions for their patients with intellectual disability or coerced patients into a choice. 55 72 74 76 77 In Ledger et al 77 , only 62% of women with intellectual disability were involved in the discussion about contraception, and only 38% made the final decision, and others stated in Wiseman and Ferrie 74 : ‘I was not given the opportunity to explore the different options. I was told what one I should take’. Three papers outlined instances where the choices of people with intellectual disability were ignored despite possessing capacity 65 66 69 and when a procedure continued despite them withdrawing consent. 69

Theme 2—Inadequate accessible health information

Lack of accessible health information.

The lack of accessible health information was the most frequently identified subtheme (16/23 studies). Some studies reported that health professionals provided information to carers instead, 60 avoided providing easy read information due to concerns about ‘offending’ patients 75 or only provided verbal information. 56 67 Informed consent was supported when health professionals recognised the importance of providing medical information 64 and when it was provided in an accessible format. 60 Alternative approaches to health information were explored, including virtual reality 68 and in-person education sessions, 59 with varying results. Overall, the need to provide information in different formats tailored to an individual’s communication needs, rather than a ‘one size fits all’ approach, was emphasised by both people with intellectual disability 60 and health professionals. 66

Insufficient information provided

Studies described situations where insufficient information was provided to people with intellectual disability to make informed decisions. For example, some people felt the information from their GP was often too basic to be helpful (Fish et al 60 ) and wanted additional information on consent forms (Rose et al 78 ).

Theme 3—The involvement of support people

Support people (including carers, family members and group home staff) were identified in 11 articles as both enablers of and barriers to informed consent. The antagonistic nature of these findings and lower frequency of subthemes are reflected in the lower quality assessments of evidence.

Support people facilitated communication with health professionals

Some studies reported carers bridging communication barriers with health to support informed consent. 63 64 McCarthy 56 found 21/23 of women with intellectual disability preferred to see doctors with a support person due to perceived benefits: ‘Sometimes I don’t understand it, so they have to explain it to my carer, so they can explain it to me easier’. Most GPs in this study (93%) also agreed that support people aided communication.

Support people helped people with intellectual disability make decisions

By advocating for people with intellectual disability, carers encouraged decision-making, 64 74 provided health information, 74 77 emotional support 76 and assisted with reading or remembering health information. 55 58 76 Some people with intellectual disability explicitly appreciated their support person’s involvement, 60 such as in McCarthy’s 55 study where 18/23 participants felt supported and safer when a support person was involved.

Support people impeded individual autonomy

The study by Wiseman and Ferrie 74 found that while younger participants with intellectual disability felt family members empowered their decision-making, older women felt family members impaired their ability to give informed consent. This was reflected in interviews with carers who questioned the capacity of the person with intellectual disability they supported and stated they would guide them to pick the ‘best choice’ or even over-ride their choices. 64 Studies of psychologists and community service directors described instances where the decision of family or carers was prioritised over the wishes of the person with intellectual disability. 65 66 Some women with intellectual disability in McCarthy’s studies (2010, 2009) 55 56 appeared to have been coerced into using contraception by parental pressures or fear of losing group home support.

Theme 4—Systemic constraints within healthcare systems

Time restraints affect informed consent and accessible healthcare.

Resource limitations create time constraints that impair the consent process and have been identified as a barrier by psychologists, 66 GPs, 56 hospital nurses 63 and community disability workers. 73 Rogers et al 66 highlighted that a personalised approach that could improve informed decision-making is restricted by inflexible medical models. Only two studies described flexible patient-centred approaches to consent. 60 72 A survey of primary care practices in 2007 reported that most did not modify their cervical screening information for patients with intellectual disability because it was not practical. 75

Inflexible models of consent

Both people with intellectual disability 76 and health professionals 66 recognised that consent is traditionally obtained through one-off interactions prior to an intervention. Yet, for people with intellectual disability, consent should ideally be an ongoing process that begins before an appointment and continues between subsequent ones. Other studies have tended to describe one-off interactions where decision-making was not revisited at subsequent appointments. 56 60 72 76

Lack of systemic supports

In one survey, self-advocates highlighted a lack of information on medication for people with intellectual disability and suggested a telephone helpline and a centralised source of information to support consent. 60 Health professionals also want greater systemic support, such as a health professional specialised in intellectual disability care to support other staff, 72 or a pharmacist specifically to help patients with intellectual disability. 61 Studies highlighted a lack of guidelines about healthcare needs of people with intellectual disabilities such as contraceptive counselling 72 or primary care. 75

Theme 5—Person-centred informed consent

Ten studies identified factors related to a person-centred approach to informed consent, grouped below into three subthemes. Health professionals should tailor their practice when obtaining informed consent from people with intellectual disability by considering how these subthemes relate to the individual. Each subtheme was described five times in the literature with a relative frequency rating of ‘C’, contributing to overall lower quality scores.

Previous experience with decision-making

Arscott et al 71 found that the ability of people with intellectual disability to consent changed with their verbal and memory skills and in different clinical vignettes, supporting the view of ‘functional’ capacity specific to the context of the medical decision. Although previous experiences with decision-making did not influence informed consent in this paper, other studies suggest that people with intellectual disability accustomed to independent decision-making were more able to make informed medical decisions, 66 70 and those who live independently were more likely to make independent healthcare decisions. 56 Health professionals should be aware that their patients with intellectual disability will have variable experience with decision-making and provide individualised support to meet their needs.

Variable awareness about healthcare rights

Consent processes should be tailored to the health literacy of patients, including emphasising available choices and the option to refuse treatment. In some studies, medical decisions were not presented to people with intellectual disability as a choice, 64 and people with intellectual disability were not informed of their legal right to accessible health information. 56

Power differences and acquiescence

Acquiescence by people with intellectual disability due to common and repeated experiences of trauma—that is, their tendency to agree with suggestions made by carers and health professionals, often to avoid upsetting others—was identified as an ongoing barrier. In McCarthy’s (2009) interviews with women with intellectual disability, some participants implicitly rejected the idea that they might make their own healthcare decisions: ‘They’re the carers, they have responsibility for me’. Others appeared to have made decisions to appease their carers: ‘I have the jab (contraceptive injection) so I can’t be blamed for getting pregnant’. 55 Two studies highlighted that health professionals need to be mindful of power imbalances when discussing consent with people with intellectual disability to ensure the choices are truly autonomous. 61 66

Theme 6—Effective communication between health professionals and patients

Implementation of reasonable adjustments for verbal and written information.

Simple language was always preferred by people with intellectual disability. 60 67 Other communication aids used in decision-making included repetition, short sentences, models, pictures and easy read brochures. 72 Another reasonable adjustment is providing the opportunity to ask questions, which women with intellectual disability in McCarthy’s (2009) study reported did not occur. 55

Tailored communication methods including non-verbal communication

Midwives noted that continuity of care allows them to develop rapport and understand the communication preferences of people with intellectual disability. 72 This is not always possible; for emergency nurses, the lack of background information about patients with intellectual disability made it challenging to understand their communication preferences. 63 The use of non-verbal communication, such as body language, was noted as underutilised 62 66 and people with intellectual disability supported the use of hearing loops, braille and sign language. 60

To the best of our knowledge, this is the first systematic review investigating the barriers and enablers of the informed consent process for healthcare procedures for people with intellectual disability. The integrative review by Goldsmith et al 26 examined capacity assessment and shares only three articles with this systematic review. 69 71 73 Since the 2000s, there has been a paradigm shift in which capacity is no longer considered a fixed ability that only some individuals possess 38 39 but instead as ‘functional’: a flexible ability that changes over time and in different contexts, 79 reflected in Goldsmith’s review. An individual’s capacity can be supported through various measures, including how information is communicated and how the decision-making process is approached. 18 80 By recognising the barriers and enablers identified in this review, physicians can help ensure the consent process for their patients with intellectual disability is both valid and truly informed. This review has highlighted the problems of inaccessible health information, insufficient clinical education on how to make reasonable adjustments and lack of person-centred trauma-informed care.

Recommendations

Health professionals require training in the informed consent process for people with intellectual disability, particularly in effective and respectful communication, reasonable adjustments and trauma-informed care. Reasonable adjustments include offering longer or multiple appointments, using accessible resources (such as easy read information or shared decision-making tools) and allowing patient choices (such as to record a consultation or involve a support person). Co-researchers reported that many people with intellectual disability prefer to go without a support person because they find it difficult to challenge their decisions and feel ignored if the health professional only talks to the support person. People with intellectual disability also feel they cannot seek second opinions before making medical decisions or feel pressured to provide consent, raising the possibility of coercion. These experiences contribute to healthcare trauma. Co-researchers raised the importance of building rapport with the person with intellectual disability and of making reasonable adjustments, such as actively advocating for the person’s autonomy, clearly stating all options including the choice to refuse treatment, providing opportunities to contribute to discussions and multiple appointments to ask questions and understand information. They felt that without these efforts to support consent, health professionals can reinforce traumatic healthcare experiences for people with intellectual disability. Co-researchers noted instances where choices were made by doctors without discussion and where they were only given a choice after requesting one and expressed concern that these barriers are greater for those with higher support needs.

Co-researchers showed how these experiences contributed to mistrust of health professionals and poorer health outcomes. In one situation, a co-researcher was not informed of a medication’s withdrawal effects, resulting in significant side-effects when it was ceased. Many people with intellectual disability describe a poor relationship with their health professionals, finding it difficult to trust health information provided due to previous traumatic experiences of disrespect, coercion, lack of choice and inadequate support. Many feel they cannot speak up due to the power imbalance and fear of retaliation. Poor consent practices and lack of reasonable adjustments directly harm therapeutic alliances by reducing trust, contribute to healthcare trauma and lead to poorer health outcomes for people with intellectual disability.

Additional education and training for health professionals is urgently needed in the areas of informed consent, reasonable adjustments and effective communication with people with intellectual disability. The experiences of health professionals within the research team confirmed that there is limited training in providing high-quality healthcare for people with intellectual disability, including reasonable adjustments and accessible health information. Co-researchers also suggested that education should be provided to carers and support people to help them better advocate for people with intellectual disability.

Health information should be provided in a multimodal format, including written easy read information. Many countries have regulation protecting the right to accessible health information and communication support to make an informed choice, such as UK’s Accessible Information Standard, 81 and Australia’s Charter of Health Care Rights, 24 yet these are rarely observed. Steps to facilitate this include routinely asking patients about information requirements, system alerts for an individual’s needs or routinely providing reasonable adjustments. 82 Co-researchers agreed that there is a lack of accessible health information, particularly about medications, and that diagrams and illustrations are underutilised. There is a critical need for more inclusive and accessible resources to help health professionals support informed consent in a safe and high-quality health system. These resources should be created through methods of inclusive research, such as co-production, actively involving people with intellectual disability in the planning, creation, and feedback process. 53

Strengths and limitations

This systematic review involved two co-researchers with intellectual disability in sense-checking findings and co-creating the easy read summary. Two co-authors who are health professionals provided additional sense-checking of findings from a different stakeholder perspective. In future research, this could be extended by involving people with intellectual disability in the design and planning of the study as per recommendations for best-practice inclusive research. 53 83

The current literature is limited by low use of inclusive research practices in research involving people with intellectual disability, increasing vulnerability to external biases (eg, inaccessible questionnaires, involvement of carers in data collection, overcompliance or acquiescence and absence of researcher reflexivity). Advisory groups or co-research with people with intellectual disability were only used in five studies. 58 60 68 74 76 Other limitations include unclear selection criteria, low sample sizes, missing data, using gatekeepers in patient selection and predominance of UK-based studies—increasing the risk of bias and reducing transferability. Nine studies (out of 15 involving people with intellectual disability) explicitly excluded those with severe or profound intellectual disability, reflecting a selection bias; only one study specifically focused on people with intellectual disability with higher support needs. Studies were limited to a few healthcare contexts, with a focus on consent about sexual health, contraception and medications.

The heterogeneity and qualitative nature of studies made it challenging to apply traditional meta-analysis. However, to promote consistency in qualitative research, the PRISMA and ENTREQ guidelines were followed. 36 37 Although no meta-analyses occurred, the duplication of study populations in McCarthy 2009 and 2010 likely contributed to increased significance of findings reported in both studies. Most included studies (13/23) were published over 10 years ago, reducing the current relevance of this review’s findings. Nonetheless, the major findings reflect underlying systemic issues within the health system, which are unlikely to have been resolved since the articles were published, as the just-released final report of the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability highlights. 84 There is an urgent need for more inclusive studies to explore the recommendations and preferences of people with intellectual disability about healthcare choices.

Informed consent processes for people with intellectual disability should include accessible information and reasonable adjustments, be tailored to individuals’ needs and comply with consent and disability legislation. Resources, guidelines and healthcare education are needed and should cover how to involve carers and support people, address systemic healthcare problems, promote a person-centred approach and ensure effective communication. These resources and future research must use principles of inclusive co-production—involving people with intellectual disability at all stages. Additionally, research is needed on people with higher support needs and in specific contexts where informed consent is vital but under-researched, such as cancer screening, palliative care, prenatal and newborn screening, surgical procedures, genetic medicine and advanced therapeutics such as gene-based therapies.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1
• Data supplement 2
• Data supplement 3
• Data supplement 4
• Data supplement 5

Contributors MD, EEP and IS conceived the idea for the systematic review. MD drafted the search strategy which was refined by EEP and IS. MD and EEP completed article screening. MD and IS completed quality assessments of included articles. MD and JH completed data extraction. MD drafted the original manuscript. JL and SS were co-researchers who sense-checked findings and were consulted to formulate dissemination plans. JL and SS co-produced the easy read summary with MD, CM, JH, EEP and IS. MD, JLS, EEP and IS reviewed manuscript wording. All authors critically reviewed the manuscript and approved it for publication. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. MD is the guarantor responsible for the overall content of this manuscript.

Funding This systematic literature review was funded by the National Health & Medical Research Council (NHMRC), Targeted Call for Research (TCR) into Improving health of people with intellectual disability. Research grant title "GeneEQUAL: equitable and accessible genomic healthcare for people with intellectual disability". NHMRC application ID: 2022/GNT2015753.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Linked Articles

• Editorial It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability Jonathon Ding Richard Keagan-Bull Irene Tuffrey-Wijne BMJ Quality & Safety 2024; 33 277-279 Published Online First: 30 Jan 2024. doi: 10.1136/bmjqs-2023-016830

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Lau F, Kuziemsky C, editors. Handbook of eHealth Evaluation: An Evidence-based Approach [Internet]. Victoria (BC): University of Victoria; 2017 Feb 27.

Handbook of eHealth Evaluation: An Evidence-based Approach [Internet].

Chapter 9 methods for literature reviews.

Guy Paré and Spyros Kitsiou .

9.1. Introduction

Literature reviews play a critical role in scholarship because science remains, first and foremost, a cumulative endeavour ( vom Brocke et al., 2009 ). As in any academic discipline, rigorous knowledge syntheses are becoming indispensable in keeping up with an exponentially growing eHealth literature, assisting practitioners, academics, and graduate students in finding, evaluating, and synthesizing the contents of many empirical and conceptual papers. Among other methods, literature reviews are essential for: (a) identifying what has been written on a subject or topic; (b) determining the extent to which a specific research area reveals any interpretable trends or patterns; (c) aggregating empirical findings related to a narrow research question to support evidence-based practice; (d) generating new frameworks and theories; and (e) identifying topics or questions requiring more investigation ( Paré, Trudel, Jaana, & Kitsiou, 2015 ).

Literature reviews can take two major forms. The most prevalent one is the “literature review” or “background” section within a journal paper or a chapter in a graduate thesis. This section synthesizes the extant literature and usually identifies the gaps in knowledge that the empirical study addresses ( Sylvester, Tate, & Johnstone, 2013 ). It may also provide a theoretical foundation for the proposed study, substantiate the presence of the research problem, justify the research as one that contributes something new to the cumulated knowledge, or validate the methods and approaches for the proposed study ( Hart, 1998 ; Levy & Ellis, 2006 ).

The second form of literature review, which is the focus of this chapter, constitutes an original and valuable work of research in and of itself ( Paré et al., 2015 ). Rather than providing a base for a researcher’s own work, it creates a solid starting point for all members of the community interested in a particular area or topic ( Mulrow, 1987 ). The so-called “review article” is a journal-length paper which has an overarching purpose to synthesize the literature in a field, without collecting or analyzing any primary data ( Green, Johnson, & Adams, 2006 ).

When appropriately conducted, review articles represent powerful information sources for practitioners looking for state-of-the art evidence to guide their decision-making and work practices ( Paré et al., 2015 ). Further, high-quality reviews become frequently cited pieces of work which researchers seek out as a first clear outline of the literature when undertaking empirical studies ( Cooper, 1988 ; Rowe, 2014 ). Scholars who track and gauge the impact of articles have found that review papers are cited and downloaded more often than any other type of published article ( Cronin, Ryan, & Coughlan, 2008 ; Montori, Wilczynski, Morgan, Haynes, & Hedges, 2003 ; Patsopoulos, Analatos, & Ioannidis, 2005 ). The reason for their popularity may be the fact that reading the review enables one to have an overview, if not a detailed knowledge of the area in question, as well as references to the most useful primary sources ( Cronin et al., 2008 ). Although they are not easy to conduct, the commitment to complete a review article provides a tremendous service to one’s academic community ( Paré et al., 2015 ; Petticrew & Roberts, 2006 ). Most, if not all, peer-reviewed journals in the fields of medical informatics publish review articles of some type.

The main objectives of this chapter are fourfold: (a) to provide an overview of the major steps and activities involved in conducting a stand-alone literature review; (b) to describe and contrast the different types of review articles that can contribute to the eHealth knowledge base; (c) to illustrate each review type with one or two examples from the eHealth literature; and (d) to provide a series of recommendations for prospective authors of review articles in this domain.

9.2. Overview of the Literature Review Process and Steps

As explained in Templier and Paré (2015) , there are six generic steps involved in conducting a review article:

• formulating the research question(s) and objective(s),
• searching the extant literature,
• screening for inclusion,
• assessing the quality of primary studies,
• extracting data, and
• analyzing data.

Although these steps are presented here in sequential order, one must keep in mind that the review process can be iterative and that many activities can be initiated during the planning stage and later refined during subsequent phases ( Finfgeld-Connett & Johnson, 2013 ; Kitchenham & Charters, 2007 ).

Formulating the research question(s) and objective(s): As a first step, members of the review team must appropriately justify the need for the review itself ( Petticrew & Roberts, 2006 ), identify the review’s main objective(s) ( Okoli & Schabram, 2010 ), and define the concepts or variables at the heart of their synthesis ( Cooper & Hedges, 2009 ; Webster & Watson, 2002 ). Importantly, they also need to articulate the research question(s) they propose to investigate ( Kitchenham & Charters, 2007 ). In this regard, we concur with Jesson, Matheson, and Lacey (2011) that clearly articulated research questions are key ingredients that guide the entire review methodology; they underscore the type of information that is needed, inform the search for and selection of relevant literature, and guide or orient the subsequent analysis. Searching the extant literature: The next step consists of searching the literature and making decisions about the suitability of material to be considered in the review ( Cooper, 1988 ). There exist three main coverage strategies. First, exhaustive coverage means an effort is made to be as comprehensive as possible in order to ensure that all relevant studies, published and unpublished, are included in the review and, thus, conclusions are based on this all-inclusive knowledge base. The second type of coverage consists of presenting materials that are representative of most other works in a given field or area. Often authors who adopt this strategy will search for relevant articles in a small number of top-tier journals in a field ( Paré et al., 2015 ). In the third strategy, the review team concentrates on prior works that have been central or pivotal to a particular topic. This may include empirical studies or conceptual papers that initiated a line of investigation, changed how problems or questions were framed, introduced new methods or concepts, or engendered important debate ( Cooper, 1988 ). Screening for inclusion: The following step consists of evaluating the applicability of the material identified in the preceding step ( Levy & Ellis, 2006 ; vom Brocke et al., 2009 ). Once a group of potential studies has been identified, members of the review team must screen them to determine their relevance ( Petticrew & Roberts, 2006 ). A set of predetermined rules provides a basis for including or excluding certain studies. This exercise requires a significant investment on the part of researchers, who must ensure enhanced objectivity and avoid biases or mistakes. As discussed later in this chapter, for certain types of reviews there must be at least two independent reviewers involved in the screening process and a procedure to resolve disagreements must also be in place ( Liberati et al., 2009 ; Shea et al., 2009 ). Assessing the quality of primary studies: In addition to screening material for inclusion, members of the review team may need to assess the scientific quality of the selected studies, that is, appraise the rigour of the research design and methods. Such formal assessment, which is usually conducted independently by at least two coders, helps members of the review team refine which studies to include in the final sample, determine whether or not the differences in quality may affect their conclusions, or guide how they analyze the data and interpret the findings ( Petticrew & Roberts, 2006 ). Ascribing quality scores to each primary study or considering through domain-based evaluations which study components have or have not been designed and executed appropriately makes it possible to reflect on the extent to which the selected study addresses possible biases and maximizes validity ( Shea et al., 2009 ). Extracting data: The following step involves gathering or extracting applicable information from each primary study included in the sample and deciding what is relevant to the problem of interest ( Cooper & Hedges, 2009 ). Indeed, the type of data that should be recorded mainly depends on the initial research questions ( Okoli & Schabram, 2010 ). However, important information may also be gathered about how, when, where and by whom the primary study was conducted, the research design and methods, or qualitative/quantitative results ( Cooper & Hedges, 2009 ). Analyzing and synthesizing data : As a final step, members of the review team must collate, summarize, aggregate, organize, and compare the evidence extracted from the included studies. The extracted data must be presented in a meaningful way that suggests a new contribution to the extant literature ( Jesson et al., 2011 ). Webster and Watson (2002) warn researchers that literature reviews should be much more than lists of papers and should provide a coherent lens to make sense of extant knowledge on a given topic. There exist several methods and techniques for synthesizing quantitative (e.g., frequency analysis, meta-analysis) and qualitative (e.g., grounded theory, narrative analysis, meta-ethnography) evidence ( Dixon-Woods, Agarwal, Jones, Young, & Sutton, 2005 ; Thomas & Harden, 2008 ).

9.3. Types of Review Articles and Brief Illustrations

EHealth researchers have at their disposal a number of approaches and methods for making sense out of existing literature, all with the purpose of casting current research findings into historical contexts or explaining contradictions that might exist among a set of primary research studies conducted on a particular topic. Our classification scheme is largely inspired from Paré and colleagues’ (2015) typology. Below we present and illustrate those review types that we feel are central to the growth and development of the eHealth domain.

9.3.1. Narrative Reviews

The narrative review is the “traditional” way of reviewing the extant literature and is skewed towards a qualitative interpretation of prior knowledge ( Sylvester et al., 2013 ). Put simply, a narrative review attempts to summarize or synthesize what has been written on a particular topic but does not seek generalization or cumulative knowledge from what is reviewed ( Davies, 2000 ; Green et al., 2006 ). Instead, the review team often undertakes the task of accumulating and synthesizing the literature to demonstrate the value of a particular point of view ( Baumeister & Leary, 1997 ). As such, reviewers may selectively ignore or limit the attention paid to certain studies in order to make a point. In this rather unsystematic approach, the selection of information from primary articles is subjective, lacks explicit criteria for inclusion and can lead to biased interpretations or inferences ( Green et al., 2006 ). There are several narrative reviews in the particular eHealth domain, as in all fields, which follow such an unstructured approach ( Silva et al., 2015 ; Paul et al., 2015 ).

Despite these criticisms, this type of review can be very useful in gathering together a volume of literature in a specific subject area and synthesizing it. As mentioned above, its primary purpose is to provide the reader with a comprehensive background for understanding current knowledge and highlighting the significance of new research ( Cronin et al., 2008 ). Faculty like to use narrative reviews in the classroom because they are often more up to date than textbooks, provide a single source for students to reference, and expose students to peer-reviewed literature ( Green et al., 2006 ). For researchers, narrative reviews can inspire research ideas by identifying gaps or inconsistencies in a body of knowledge, thus helping researchers to determine research questions or formulate hypotheses. Importantly, narrative reviews can also be used as educational articles to bring practitioners up to date with certain topics of issues ( Green et al., 2006 ).

Recently, there have been several efforts to introduce more rigour in narrative reviews that will elucidate common pitfalls and bring changes into their publication standards. Information systems researchers, among others, have contributed to advancing knowledge on how to structure a “traditional” review. For instance, Levy and Ellis (2006) proposed a generic framework for conducting such reviews. Their model follows the systematic data processing approach comprised of three steps, namely: (a) literature search and screening; (b) data extraction and analysis; and (c) writing the literature review. They provide detailed and very helpful instructions on how to conduct each step of the review process. As another methodological contribution, vom Brocke et al. (2009) offered a series of guidelines for conducting literature reviews, with a particular focus on how to search and extract the relevant body of knowledge. Last, Bandara, Miskon, and Fielt (2011) proposed a structured, predefined and tool-supported method to identify primary studies within a feasible scope, extract relevant content from identified articles, synthesize and analyze the findings, and effectively write and present the results of the literature review. We highly recommend that prospective authors of narrative reviews consult these useful sources before embarking on their work.

Darlow and Wen (2015) provide a good example of a highly structured narrative review in the eHealth field. These authors synthesized published articles that describe the development process of mobile health ( m-health ) interventions for patients’ cancer care self-management. As in most narrative reviews, the scope of the research questions being investigated is broad: (a) how development of these systems are carried out; (b) which methods are used to investigate these systems; and (c) what conclusions can be drawn as a result of the development of these systems. To provide clear answers to these questions, a literature search was conducted on six electronic databases and Google Scholar . The search was performed using several terms and free text words, combining them in an appropriate manner. Four inclusion and three exclusion criteria were utilized during the screening process. Both authors independently reviewed each of the identified articles to determine eligibility and extract study information. A flow diagram shows the number of studies identified, screened, and included or excluded at each stage of study selection. In terms of contributions, this review provides a series of practical recommendations for m-health intervention development.

9.3.2. Descriptive or Mapping Reviews

The primary goal of a descriptive review is to determine the extent to which a body of knowledge in a particular research topic reveals any interpretable pattern or trend with respect to pre-existing propositions, theories, methodologies or findings ( King & He, 2005 ; Paré et al., 2015 ). In contrast with narrative reviews, descriptive reviews follow a systematic and transparent procedure, including searching, screening and classifying studies ( Petersen, Vakkalanka, & Kuzniarz, 2015 ). Indeed, structured search methods are used to form a representative sample of a larger group of published works ( Paré et al., 2015 ). Further, authors of descriptive reviews extract from each study certain characteristics of interest, such as publication year, research methods, data collection techniques, and direction or strength of research outcomes (e.g., positive, negative, or non-significant) in the form of frequency analysis to produce quantitative results ( Sylvester et al., 2013 ). In essence, each study included in a descriptive review is treated as the unit of analysis and the published literature as a whole provides a database from which the authors attempt to identify any interpretable trends or draw overall conclusions about the merits of existing conceptualizations, propositions, methods or findings ( Paré et al., 2015 ). In doing so, a descriptive review may claim that its findings represent the state of the art in a particular domain ( King & He, 2005 ).

In the fields of health sciences and medical informatics, reviews that focus on examining the range, nature and evolution of a topic area are described by Anderson, Allen, Peckham, and Goodwin (2008) as mapping reviews . Like descriptive reviews, the research questions are generic and usually relate to publication patterns and trends. There is no preconceived plan to systematically review all of the literature although this can be done. Instead, researchers often present studies that are representative of most works published in a particular area and they consider a specific time frame to be mapped.

An example of this approach in the eHealth domain is offered by DeShazo, Lavallie, and Wolf (2009). The purpose of this descriptive or mapping review was to characterize publication trends in the medical informatics literature over a 20-year period (1987 to 2006). To achieve this ambitious objective, the authors performed a bibliometric analysis of medical informatics citations indexed in medline using publication trends, journal frequencies, impact factors, Medical Subject Headings (MeSH) term frequencies, and characteristics of citations. Findings revealed that there were over 77,000 medical informatics articles published during the covered period in numerous journals and that the average annual growth rate was 12%. The MeSH term analysis also suggested a strong interdisciplinary trend. Finally, average impact scores increased over time with two notable growth periods. Overall, patterns in research outputs that seem to characterize the historic trends and current components of the field of medical informatics suggest it may be a maturing discipline (DeShazo et al., 2009).

9.3.3. Scoping Reviews

Scoping reviews attempt to provide an initial indication of the potential size and nature of the extant literature on an emergent topic (Arksey & O’Malley, 2005; Daudt, van Mossel, & Scott, 2013 ; Levac, Colquhoun, & O’Brien, 2010). A scoping review may be conducted to examine the extent, range and nature of research activities in a particular area, determine the value of undertaking a full systematic review (discussed next), or identify research gaps in the extant literature ( Paré et al., 2015 ). In line with their main objective, scoping reviews usually conclude with the presentation of a detailed research agenda for future works along with potential implications for both practice and research.

Unlike narrative and descriptive reviews, the whole point of scoping the field is to be as comprehensive as possible, including grey literature (Arksey & O’Malley, 2005). Inclusion and exclusion criteria must be established to help researchers eliminate studies that are not aligned with the research questions. It is also recommended that at least two independent coders review abstracts yielded from the search strategy and then the full articles for study selection ( Daudt et al., 2013 ). The synthesized evidence from content or thematic analysis is relatively easy to present in tabular form (Arksey & O’Malley, 2005; Thomas & Harden, 2008 ).

One of the most highly cited scoping reviews in the eHealth domain was published by Archer, Fevrier-Thomas, Lokker, McKibbon, and Straus (2011) . These authors reviewed the existing literature on personal health record ( phr ) systems including design, functionality, implementation, applications, outcomes, and benefits. Seven databases were searched from 1985 to March 2010. Several search terms relating to phr s were used during this process. Two authors independently screened titles and abstracts to determine inclusion status. A second screen of full-text articles, again by two independent members of the research team, ensured that the studies described phr s. All in all, 130 articles met the criteria and their data were extracted manually into a database. The authors concluded that although there is a large amount of survey, observational, cohort/panel, and anecdotal evidence of phr benefits and satisfaction for patients, more research is needed to evaluate the results of phr implementations. Their in-depth analysis of the literature signalled that there is little solid evidence from randomized controlled trials or other studies through the use of phr s. Hence, they suggested that more research is needed that addresses the current lack of understanding of optimal functionality and usability of these systems, and how they can play a beneficial role in supporting patient self-management ( Archer et al., 2011 ).

9.3.4. Forms of Aggregative Reviews

Healthcare providers, practitioners, and policy-makers are nowadays overwhelmed with large volumes of information, including research-based evidence from numerous clinical trials and evaluation studies, assessing the effectiveness of health information technologies and interventions ( Ammenwerth & de Keizer, 2004 ; Deshazo et al., 2009 ). It is unrealistic to expect that all these disparate actors will have the time, skills, and necessary resources to identify the available evidence in the area of their expertise and consider it when making decisions. Systematic reviews that involve the rigorous application of scientific strategies aimed at limiting subjectivity and bias (i.e., systematic and random errors) can respond to this challenge.

Systematic reviews attempt to aggregate, appraise, and synthesize in a single source all empirical evidence that meet a set of previously specified eligibility criteria in order to answer a clearly formulated and often narrow research question on a particular topic of interest to support evidence-based practice ( Liberati et al., 2009 ). They adhere closely to explicit scientific principles ( Liberati et al., 2009 ) and rigorous methodological guidelines (Higgins & Green, 2008) aimed at reducing random and systematic errors that can lead to deviations from the truth in results or inferences. The use of explicit methods allows systematic reviews to aggregate a large body of research evidence, assess whether effects or relationships are in the same direction and of the same general magnitude, explain possible inconsistencies between study results, and determine the strength of the overall evidence for every outcome of interest based on the quality of included studies and the general consistency among them ( Cook, Mulrow, & Haynes, 1997 ). The main procedures of a systematic review involve:

• Formulating a review question and developing a search strategy based on explicit inclusion criteria for the identification of eligible studies (usually described in the context of a detailed review protocol).
• Searching for eligible studies using multiple databases and information sources, including grey literature sources, without any language restrictions.
• Selecting studies, extracting data, and assessing risk of bias in a duplicate manner using two independent reviewers to avoid random or systematic errors in the process.
• Analyzing data using quantitative or qualitative methods.
• Presenting results in summary of findings tables.
• Interpreting results and drawing conclusions.

Many systematic reviews, but not all, use statistical methods to combine the results of independent studies into a single quantitative estimate or summary effect size. Known as meta-analyses , these reviews use specific data extraction and statistical techniques (e.g., network, frequentist, or Bayesian meta-analyses) to calculate from each study by outcome of interest an effect size along with a confidence interval that reflects the degree of uncertainty behind the point estimate of effect ( Borenstein, Hedges, Higgins, & Rothstein, 2009 ; Deeks, Higgins, & Altman, 2008 ). Subsequently, they use fixed or random-effects analysis models to combine the results of the included studies, assess statistical heterogeneity, and calculate a weighted average of the effect estimates from the different studies, taking into account their sample sizes. The summary effect size is a value that reflects the average magnitude of the intervention effect for a particular outcome of interest or, more generally, the strength of a relationship between two variables across all studies included in the systematic review. By statistically combining data from multiple studies, meta-analyses can create more precise and reliable estimates of intervention effects than those derived from individual studies alone, when these are examined independently as discrete sources of information.

The review by Gurol-Urganci, de Jongh, Vodopivec-Jamsek, Atun, and Car (2013) on the effects of mobile phone messaging reminders for attendance at healthcare appointments is an illustrative example of a high-quality systematic review with meta-analysis. Missed appointments are a major cause of inefficiency in healthcare delivery with substantial monetary costs to health systems. These authors sought to assess whether mobile phone-based appointment reminders delivered through Short Message Service ( sms ) or Multimedia Messaging Service ( mms ) are effective in improving rates of patient attendance and reducing overall costs. To this end, they conducted a comprehensive search on multiple databases using highly sensitive search strategies without language or publication-type restrictions to identify all rct s that are eligible for inclusion. In order to minimize the risk of omitting eligible studies not captured by the original search, they supplemented all electronic searches with manual screening of trial registers and references contained in the included studies. Study selection, data extraction, and risk of bias assessments were performed inde­­pen­dently by two coders using standardized methods to ensure consistency and to eliminate potential errors. Findings from eight rct s involving 6,615 participants were pooled into meta-analyses to calculate the magnitude of effects that mobile text message reminders have on the rate of attendance at healthcare appointments compared to no reminders and phone call reminders.

Meta-analyses are regarded as powerful tools for deriving meaningful conclusions. However, there are situations in which it is neither reasonable nor appropriate to pool studies together using meta-analytic methods simply because there is extensive clinical heterogeneity between the included studies or variation in measurement tools, comparisons, or outcomes of interest. In these cases, systematic reviews can use qualitative synthesis methods such as vote counting, content analysis, classification schemes and tabulations, as an alternative approach to narratively synthesize the results of the independent studies included in the review. This form of review is known as qualitative systematic review.

A rigorous example of one such review in the eHealth domain is presented by Mickan, Atherton, Roberts, Heneghan, and Tilson (2014) on the use of handheld computers by healthcare professionals and their impact on access to information and clinical decision-making. In line with the methodological guide­lines for systematic reviews, these authors: (a) developed and registered with prospero ( www.crd.york.ac.uk/ prospero / ) an a priori review protocol; (b) conducted comprehensive searches for eligible studies using multiple databases and other supplementary strategies (e.g., forward searches); and (c) subsequently carried out study selection, data extraction, and risk of bias assessments in a duplicate manner to eliminate potential errors in the review process. Heterogeneity between the included studies in terms of reported outcomes and measures precluded the use of meta-analytic methods. To this end, the authors resorted to using narrative analysis and synthesis to describe the effectiveness of handheld computers on accessing information for clinical knowledge, adherence to safety and clinical quality guidelines, and diagnostic decision-making.

In recent years, the number of systematic reviews in the field of health informatics has increased considerably. Systematic reviews with discordant findings can cause great confusion and make it difficult for decision-makers to interpret the review-level evidence ( Moher, 2013 ). Therefore, there is a growing need for appraisal and synthesis of prior systematic reviews to ensure that decision-making is constantly informed by the best available accumulated evidence. Umbrella reviews , also known as overviews of systematic reviews, are tertiary types of evidence synthesis that aim to accomplish this; that is, they aim to compare and contrast findings from multiple systematic reviews and meta-analyses ( Becker & Oxman, 2008 ). Umbrella reviews generally adhere to the same principles and rigorous methodological guidelines used in systematic reviews. However, the unit of analysis in umbrella reviews is the systematic review rather than the primary study ( Becker & Oxman, 2008 ). Unlike systematic reviews that have a narrow focus of inquiry, umbrella reviews focus on broader research topics for which there are several potential interventions ( Smith, Devane, Begley, & Clarke, 2011 ). A recent umbrella review on the effects of home telemonitoring interventions for patients with heart failure critically appraised, compared, and synthesized evidence from 15 systematic reviews to investigate which types of home telemonitoring technologies and forms of interventions are more effective in reducing mortality and hospital admissions ( Kitsiou, Paré, & Jaana, 2015 ).

9.3.5. Realist Reviews

Realist reviews are theory-driven interpretative reviews developed to inform, enhance, or supplement conventional systematic reviews by making sense of heterogeneous evidence about complex interventions applied in diverse contexts in a way that informs policy decision-making ( Greenhalgh, Wong, Westhorp, & Pawson, 2011 ). They originated from criticisms of positivist systematic reviews which centre on their “simplistic” underlying assumptions ( Oates, 2011 ). As explained above, systematic reviews seek to identify causation. Such logic is appropriate for fields like medicine and education where findings of randomized controlled trials can be aggregated to see whether a new treatment or intervention does improve outcomes. However, many argue that it is not possible to establish such direct causal links between interventions and outcomes in fields such as social policy, management, and information systems where for any intervention there is unlikely to be a regular or consistent outcome ( Oates, 2011 ; Pawson, 2006 ; Rousseau, Manning, & Denyer, 2008 ).

To circumvent these limitations, Pawson, Greenhalgh, Harvey, and Walshe (2005) have proposed a new approach for synthesizing knowledge that seeks to unpack the mechanism of how “complex interventions” work in particular contexts. The basic research question — what works? — which is usually associated with systematic reviews changes to: what is it about this intervention that works, for whom, in what circumstances, in what respects and why? Realist reviews have no particular preference for either quantitative or qualitative evidence. As a theory-building approach, a realist review usually starts by articulating likely underlying mechanisms and then scrutinizes available evidence to find out whether and where these mechanisms are applicable ( Shepperd et al., 2009 ). Primary studies found in the extant literature are viewed as case studies which can test and modify the initial theories ( Rousseau et al., 2008 ).

The main objective pursued in the realist review conducted by Otte-Trojel, de Bont, Rundall, and van de Klundert (2014) was to examine how patient portals contribute to health service delivery and patient outcomes. The specific goals were to investigate how outcomes are produced and, most importantly, how variations in outcomes can be explained. The research team started with an exploratory review of background documents and research studies to identify ways in which patient portals may contribute to health service delivery and patient outcomes. The authors identified six main ways which represent “educated guesses” to be tested against the data in the evaluation studies. These studies were identified through a formal and systematic search in four databases between 2003 and 2013. Two members of the research team selected the articles using a pre-established list of inclusion and exclusion criteria and following a two-step procedure. The authors then extracted data from the selected articles and created several tables, one for each outcome category. They organized information to bring forward those mechanisms where patient portals contribute to outcomes and the variation in outcomes across different contexts.

9.3.6. Critical Reviews

Lastly, critical reviews aim to provide a critical evaluation and interpretive analysis of existing literature on a particular topic of interest to reveal strengths, weaknesses, contradictions, controversies, inconsistencies, and/or other important issues with respect to theories, hypotheses, research methods or results ( Baumeister & Leary, 1997 ; Kirkevold, 1997 ). Unlike other review types, critical reviews attempt to take a reflective account of the research that has been done in a particular area of interest, and assess its credibility by using appraisal instruments or critical interpretive methods. In this way, critical reviews attempt to constructively inform other scholars about the weaknesses of prior research and strengthen knowledge development by giving focus and direction to studies for further improvement ( Kirkevold, 1997 ).

Kitsiou, Paré, and Jaana (2013) provide an example of a critical review that assessed the methodological quality of prior systematic reviews of home telemonitoring studies for chronic patients. The authors conducted a comprehensive search on multiple databases to identify eligible reviews and subsequently used a validated instrument to conduct an in-depth quality appraisal. Results indicate that the majority of systematic reviews in this particular area suffer from important methodological flaws and biases that impair their internal validity and limit their usefulness for clinical and decision-making purposes. To this end, they provide a number of recommendations to strengthen knowledge development towards improving the design and execution of future reviews on home telemonitoring.

9.4. Summary

Table 9.1 outlines the main types of literature reviews that were described in the previous sub-sections and summarizes the main characteristics that distinguish one review type from another. It also includes key references to methodological guidelines and useful sources that can be used by eHealth scholars and researchers for planning and developing reviews.

Typology of Literature Reviews (adapted from Paré et al., 2015).

As shown in Table 9.1 , each review type addresses different kinds of research questions or objectives, which subsequently define and dictate the methods and approaches that need to be used to achieve the overarching goal(s) of the review. For example, in the case of narrative reviews, there is greater flexibility in searching and synthesizing articles ( Green et al., 2006 ). Researchers are often relatively free to use a diversity of approaches to search, identify, and select relevant scientific articles, describe their operational characteristics, present how the individual studies fit together, and formulate conclusions. On the other hand, systematic reviews are characterized by their high level of systematicity, rigour, and use of explicit methods, based on an “a priori” review plan that aims to minimize bias in the analysis and synthesis process (Higgins & Green, 2008). Some reviews are exploratory in nature (e.g., scoping/mapping reviews), whereas others may be conducted to discover patterns (e.g., descriptive reviews) or involve a synthesis approach that may include the critical analysis of prior research ( Paré et al., 2015 ). Hence, in order to select the most appropriate type of review, it is critical to know before embarking on a review project, why the research synthesis is conducted and what type of methods are best aligned with the pursued goals.

9.5. Concluding Remarks

In light of the increased use of evidence-based practice and research generating stronger evidence ( Grady et al., 2011 ; Lyden et al., 2013 ), review articles have become essential tools for summarizing, synthesizing, integrating or critically appraising prior knowledge in the eHealth field. As mentioned earlier, when rigorously conducted review articles represent powerful information sources for eHealth scholars and practitioners looking for state-of-the-art evidence. The typology of literature reviews we used herein will allow eHealth researchers, graduate students and practitioners to gain a better understanding of the similarities and differences between review types.

We must stress that this classification scheme does not privilege any specific type of review as being of higher quality than another ( Paré et al., 2015 ). As explained above, each type of review has its own strengths and limitations. Having said that, we realize that the methodological rigour of any review — be it qualitative, quantitative or mixed — is a critical aspect that should be considered seriously by prospective authors. In the present context, the notion of rigour refers to the reliability and validity of the review process described in section 9.2. For one thing, reliability is related to the reproducibility of the review process and steps, which is facilitated by a comprehensive documentation of the literature search process, extraction, coding and analysis performed in the review. Whether the search is comprehensive or not, whether it involves a methodical approach for data extraction and synthesis or not, it is important that the review documents in an explicit and transparent manner the steps and approach that were used in the process of its development. Next, validity characterizes the degree to which the review process was conducted appropriately. It goes beyond documentation and reflects decisions related to the selection of the sources, the search terms used, the period of time covered, the articles selected in the search, and the application of backward and forward searches ( vom Brocke et al., 2009 ). In short, the rigour of any review article is reflected by the explicitness of its methods (i.e., transparency) and the soundness of the approach used. We refer those interested in the concepts of rigour and quality to the work of Templier and Paré (2015) which offers a detailed set of methodological guidelines for conducting and evaluating various types of review articles.

To conclude, our main objective in this chapter was to demystify the various types of literature reviews that are central to the continuous development of the eHealth field. It is our hope that our descriptive account will serve as a valuable source for those conducting, evaluating or using reviews in this important and growing domain.

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• Cite this Page Paré G, Kitsiou S. Chapter 9 Methods for Literature Reviews. In: Lau F, Kuziemsky C, editors. Handbook of eHealth Evaluation: An Evidence-based Approach [Internet]. Victoria (BC): University of Victoria; 2017 Feb 27.
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• Types of Review Articles and Brief Illustrations
• Concluding Remarks

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Critic’s Notebook

‘James,’ ‘Demon Copperhead’ and the Triumph of Literary Fan Fiction

How Percival Everett and Barbara Kingsolver reimagined classic works by Mark Twain and Charles Dickens.

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By A.O. Scott

One of the most talked-about novels of the year so far is “ James ,” by Percival Everett. Last year, everyone seemed to be buzzing about Barbara Kingsolver’s “ Demon Copperhead ,” which won a Pulitzer Prize for fiction . These are very different books with one big thing in common: Each reimagines a beloved 19th-century masterwork, a coming-of-age story that had been a staple of youthful reading for generations.

“Demon Copperhead” takes “David Copperfield,” Charles Dickens’s 1850 chronicle of a young boy’s adventures amid the cruelty and poverty of Victorian England, and transplants it to the rocky soil of modern Appalachia, where poverty and cruelty continue to flourish, along with opioids, environmental degradation and corruption. “James” retells Mark Twain’s “Adventures of Huckleberry Finn,” first published in 1884, from the point of view of Huck’s enslaved companion, Jim — now James.

The rewriting of old books is hardly a new practice, though it’s one that critics often like to complain about. Doesn’t anyone have an original idea ? Can’t we just leave the classics alone?

Of course not. Without imitation, our literature would be threadbare. The modern canon is unimaginable without such acts of appropriation as James Joyce’s “Ulysses,” which deposited the “Odyssey” in 1904 Dublin, and Jean Rhys’s “Wide Sargasso Sea,” an audacious postcolonial prequel to “Jane Eyre.” More recently, Zadie Smith refashioned E.M. Forster’s “Howards End” into “ On Beauty ” and tackled Dickens in “ The Fraud, ” while Kamel Daoud answered Albert Camus’s “The Stranger” with “ The Meursault Investigation .”

Shakespeare ransacked Holinshed’s “Chronicles” for his histories and whatever Latin and Italian plays he could grab hold of for his comedies and tragedies. A great many of those would be ripped off, too — reinvented, transposed, updated — by ambitious artists of later generations. Tom Stoppard and John Updike twisted “Hamlet” into “Rosencrantz and Guildenstern Are Dead” and “Gertrude and Claudius.” “Romeo and Juliet” blossomed into “West Side Story.” The best modern versions of “Macbeth” and “King Lear” are samurai movies directed by Akira Kurosawa .

As for Dickens and Twain, it’s hard to think of two more energetic self-imitators. Their collected writings are thick with sequels, reboots and spinoffs. Literary brands in their own right, they were among the most successful IP-driven franchise entertainers of their respective generations, belonging as much to popular culture as to the world of letters.

“David Copperfield,” drawing on incidents in Dickens’s early life and coming in the wake of blockbusters like “The Pickwick Papers” and “Oliver Twist,” functions as an autobiographical superhero origin story. David, emerging from a childhood that is the definition of “Dickensian,” discovers his powers as a writer and ascends toward the celebrity his creator enjoyed.

Twain was already famous when he published “Huckleberry Finn,” which revived the characters and setting of an earlier success. The very first sentence gestures toward a larger novelistic universe: “You don’t know about me without you have read a book by the name of ‘The Adventures of Tom Sawyer’; but that ain’t no matter.” (Classic sequelism: a welcome back to the established fans while ushering in the newbies.) Tom, who very nearly ruins Huck’s book when he shows up at the end, is the heart of the franchise: Tony Stark to Huck’s Ant-Man, the principal hero in an open-ended series of adventures, including a handful that Twain left unfinished .

“James” and “Demon Copperhead,” then, might fairly be described as fan fiction. Not just because of the affection Everett and Kingsolver show for their predecessors — in his acknowledgments, Everett imagines a “long-awaited lunch with Mark Twain” in the afterlife; in hers, Kingsolver refers to Dickens as her “genius friend” — but because of the liberties their love allows them to take. “Huckleberry Finn” and “David Copperfield” may be especially susceptible to revision because they are both profoundly imperfect books, with flaws that their most devoted readers have not so much overlooked as patiently endured.

I’m not talking primarily about matters of language that scrape against modern sensibilities — about Victorian sexual mores in Dickens or racial slurs in Twain. As the critic and novelist David Gates suggests in his introduction to the Modern Library edition of “David Copperfield,” “sophisticated readers correct for the merely antiquated.” I’m referring to failures of stylistic and narrative quality control.

As Gates puts it, Dickens’s novel “goes squishy and unctuous” when he “stops following his storytelling instincts and starts listening to extra-literary imperatives.” Preachiness and piety are his most evident vices. Twain’s much noted misjudgment goes in other directions, as he abandons the powerful story of Huck and Jim’s friendship — and the ethical awakening at its heart — to revert to strenuous boys-adventure Tom Sawyerism. The half-dozen final chapters postpone Jim’s freedom so that Tom — and possibly Twain as well — can show off his familiarity with the swashbuckling tropes of popular fiction and insulate “Huckleberry Finn” from the charge of taking itself too seriously.

“Persons attempting to find a moral in it will be banished,” Twain warned in a prefatory note. But “Huckleberry Finn” and “David Copperfield” are both essentially comic — sometimes outright hilarious — novels rooted in hatred of injustice. It’s impossible to tease those impulses apart, or to separate what’s most appealing about the books from what’s frustrating.

That tension, I think, is what opens the door to Kingsolver’s and Everett’s reimaginings. For Kingsolver, “David Copperfield” is an “impassioned critique of institutional poverty and its damaging effects on children in his society. Those problems are still with us.” (“You’d think he was from around here,” her protagonist says when he reads Dickens for the first time.)

One way Kingsolver insulates “Demon Copperhead” from Dickensian sentimentality is by giving her protagonist a voice likely to remind many readers of Huckleberry Finn himself. Huck, after all, is the North American archetype of the resourceful, marginal, backwoods man-child. Though she doesn’t push as far into regional dialect as Twain did, the tang and salt of what used to be called southwestern humor season her pages.

Dialect figures in Dickens and Twain as a mark of authenticity and a source of laughter. In “James,” Everett weaves it into the novel’s critique of power. He replicates Jim’s speech patterns from “Huckleberry Finn,” but here they represent the language enslaved Black characters use in front of white people, part of a performance of servility and simple-mindedness that is vital to surviving in a climate of pervasive racial terror. Among themselves, James and the other slaves are witty and philosophical, attributes that also characterize James’s first-person narration. “Never had a situation felt so absurd, surreal and ridiculous,” he muses after he has been conscripted into a traveling minstrel show. “And I had spent my life as a slave.”

In “Huckleberry Finn,” Jim is Huck’s traveling companion and protector, the butt of his pranks and the agent of his redemption. Early in their journey downriver, Huck is stricken with guilt at the “sin” of helping Jim escape. His gradual understanding of the error of this thinking — of the essential corruption of a society built on human chattel — is the narrative heart of Twain’s book. Against what he has been taught, against the precepts of the “sivilized” world, he comes to see Jim as a person.

For Everett’s James, his own humanity is not in doubt, but under perpetual assault. His relationship with Huck takes on a new complexity. How far can he trust this outcast white boy? How much should he risk in caring for him? To answer those questions would be to spoil some of Everett’s boldest and most brilliant twists on Twain’s tale.

Which, in Everett’s hands, becomes, like “David Copperfield,” the story of a writer. James, who has surreptitiously learned how to read, comes into possession of a pencil stub — a treasure whose acquisition exacts a horrific cost. It represents the freedom of self-representation, the hope, implicitly realized by the novel itself, that James might someday tell his own story.

James’s version is not something Twain could have conceived, but it is nonetheless a latent possibility in the pages of “Huckleberry Finn,” much as the terrible logic of dispossession, addiction and violence in 21st-century America can be read between the lines of Dickens. Everett and Kingsolver are able to see that. This is what originality looks like.

A.O. Scott is a critic at large for The Times’s Book Review, writing about literature and ideas. He joined The Times in 2000 and was a film critic until early 2023. More about A.O. Scott

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• Open access
• Published: 24 April 2024

Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review

• Virginia Dickson-Swift 1 ,
• Joanne Adams 1 ,
• Evelien Spelten 1 ,
• Irene Blackberry 2 ,
• Carlene Wilson 3 , 4 , 5 &
• Eva Yuen 3 , 6 , 7 , 8  

BMC Women's Health volume  24 , Article number:  256 ( 2024 ) Cite this article

159 Accesses

Metrics details

This scoping review aimed to identify and present the evidence describing key motivations for breast cancer screening among women aged ≥ 75 years. Few of the internationally available guidelines recommend continued biennial screening for this age group. Some suggest ongoing screening is unnecessary or should be determined on individual health status and life expectancy. Recent research has shown that despite recommendations regarding screening, older women continue to hold positive attitudes to breast screening and participate when the opportunity is available.

All original research articles that address motivation, intention and/or participation in screening for breast cancer among women aged ≥ 75 years were considered for inclusion. These included articles reporting on women who use public and private breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The Joanna Briggs Institute (JBI) methodology for scoping reviews was used to guide this review. A comprehensive search strategy was developed with the assistance of a specialist librarian to access selected databases including: the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, Web of Science and PsychInfo. The review was restricted to original research studies published since 2009, available in English and focusing on high-income countries (as defined by the World Bank). Title and abstract screening, followed by an assessment of full-text studies against the inclusion criteria was completed by at least two reviewers. Data relating to key motivations, screening intention and behaviour were extracted, and a thematic analysis of study findings undertaken.

A total of fourteen (14) studies were included in the review. Thematic analysis resulted in identification of three themes from included studies highlighting that decisions about screening were influenced by: knowledge of the benefits and harms of screening and their relationship to age; underlying attitudes to the importance of cancer screening in women's lives; and use of decision aids to improve knowledge and guide decision-making.

The results of this review provide a comprehensive overview of current knowledge regarding the motivations and screening behaviour of older women about breast cancer screening which may inform policy development.

Peer Review reports

Introduction

Breast cancer is now the most commonly diagnosed cancer in the world overtaking lung cancer in 2021 [ 1 ]. Across the globe, breast cancer contributed to 25.8% of the total number of new cases of cancer diagnosed in 2020 [ 2 ] and accounts for a high disease burden for women [ 3 ]. Screening for breast cancer is an effective means of detecting early-stage cancer and has been shown to significantly improve survival rates [ 4 ]. A recent systematic review of international screening guidelines found that most countries recommend that women have biennial mammograms between the ages of 40–70 years [ 5 ] with some recommending that there should be no upper age limit [ 6 , 7 , 8 , 9 , 10 , 11 , 12 ] and others suggesting that benefits of continued screening for women over 75 are not clear [ 13 , 14 , 15 ].

Some guidelines suggest that the decision to end screening should be determined based on the individual health status of the woman, their life expectancy and current health issues [ 5 , 16 , 17 ]. This is because the benefits of mammography screening may be limited after 7 years due to existing comorbidities and limited life expectancy [ 18 , 19 , 20 , 21 ], with some jurisdictions recommending breast cancer screening for women ≥ 75 years only when life expectancy is estimated as at least 7–10 years [ 22 ]. Others have argued that decisions about continuing with screening mammography should depend on individual patient risk and health management preferences [ 23 ]. This decision is likely facilitated by a discussion between a health care provider and patient about the harms and benefits of screening outside the recommended ages [ 24 , 25 ]. While mammography may enable early detection of breast cancer, it is clear that false-positive results and overdiagnosis Footnote 1 may occur. Studies have estimated that up to 25% of breast cancer cases in the general population may be over diagnosed [ 26 , 27 , 28 ].

The risk of being diagnosed with breast cancer increases with age and approximately 80% of new cases of breast cancer in high-income countries are in women over the age of 50 [ 29 ]. The average age of first diagnosis of breast cancer in high income countries is comparable to that of Australian women which is now 61 years [ 2 , 4 , 29 ]. Studies show that women aged ≥ 75 years generally have positive attitudes to mammography screening and report high levels of perceived benefits including early detection of breast cancer and a desire to stay healthy as they age [ 21 , 30 , 31 , 32 ]. Some women aged over 74 participate, or plan to participate, in screening despite recommendations from health professionals and government guidelines advising against it [ 33 ]. Results of a recent review found that knowledge of the recommended guidelines and the potential harms of screening are limited and many older women believed that the benefits of continued screening outweighed the risks [ 30 ].

Very few studies have been undertaken to understand the motivations of women to screen or to establish screening participation rates among women aged ≥ 75 and older. This is surprising given that increasing age is recognised as a key risk factor for the development of breast cancer, and that screening is offered in many locations around the world every two years up until 74 years. The importance of this topic is high given the ambiguity around best practice for participation beyond 74 years. A preliminary search of Open Science Framework, PROSPERO, Cochrane Database of Systematic Reviews and JBI Evidence Synthesis in May 2022 did not locate any reviews on this topic.

This scoping review has allowed for the mapping of a broad range of research to explore the breadth and depth of the literature, summarize the evidence and identify knowledge gaps [ 34 , 35 ]. This information has supported the development of a comprehensive overview of current knowledge of motivations of women to screen and screening participation rates among women outside the targeted age of many international screening programs.

Materials and methods

Research question.

The research question for this scoping review was developed by applying the Population—Concept—Context (PCC) framework [ 36 ]. The current review addresses the research question “What research has been undertaken in high-income countries (context) exploring the key motivations to screen for breast cancer and screening participation (concepts) among women ≥ 75 years of age (population)?

Eligibility criteria

Participants.

Women aged ≥ 75 years were the key population. Specifically, motivations to screen and screening intention and behaviour and the variables that discriminate those who screen from those who do not (non-screeners) were utilised as the key predictors and outcomes respectively.

From a conceptual perspective it was considered that motivation led to behaviour, therefore articles that described motivation and corresponding behaviour were considered. These included articles reporting on women who use public (government funded) and private (fee for service) breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The scope included high-income countries using the World Bank definition [ 37 ]. These countries have broadly similar health systems and opportunities for breast cancer screening in both public and private settings.

Types of sources

All studies reporting original research in peer-reviewed journals from January 2009 were eligible for inclusion, regardless of design. This date was selected due to an evaluation undertaken for BreastScreen Australia recommending expansion of the age group to include 70–74-year-old women [ 38 ]. This date was also indicative of international debate regarding breast cancer screening effectiveness at this time [ 39 , 40 ]. Reviews were also included, regardless of type—scoping, systematic, or narrative. Only sources published in English and available through the University’s extensive research holdings were eligible for inclusion. Ineligible materials were conference abstracts, letters to the editor, editorials, opinion pieces, commentaries, newspaper articles, dissertations and theses.

This scoping review was registered with the Open Science Framework database ( https://osf.io/fd3eh ) and followed Joanna Briggs Institute (JBI) methodology for scoping reviews [ 35 , 36 ]. Although ethics approval is not required for scoping reviews the broader study was approved by the University Ethics Committee (approval number HEC 21249).

Search strategy

A pilot search strategy was developed in consultation with an expert health librarian and tested in MEDLINE (OVID) and conducted on 3 June 2022. Articles from this pilot search were compared with seminal articles previously identified by the members of the team and used to refine the search terms. The search terms were then searched as both keywords and subject headings (e.g., MeSH) in the titles and abstracts and Boolean operators employed. A full MEDLINE search was then carried out by the librarian (see Table  1 ). This search strategy was adapted for use in each of the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Web of Science and PsychInfo databases. The references of included studies have been hand-searched to identify any additional evidence sources.

Study/source of evidence selection

Following the search, all identified citations were collated and uploaded into EndNote v.X20 (Clarivate Analytics, PA, USA) and duplicates removed. The resulting articles were then imported into Covidence – Cochrane’s systematic review management software [ 41 ]. Duplicates were removed once importation was complete, and title and abstract screening was undertaken against the eligibility criteria. A sample of 25 articles were assessed by all reviewers to ensure reliability in the application of the inclusion and exclusion criteria. Team discussion was used to ensure consistent application. The Covidence software supports blind reviewing with two reviewers required at each screening phase. Potentially relevant sources were retrieved in full text and were assessed against the inclusion criteria by two independent reviewers. Conflicts were flagged within the software which allows the team to discuss those that have disagreements until a consensus was reached. Reasons for exclusion of studies at full text were recorded and reported in the scoping review. The Preferred Reporting Items of Systematic Reviews extension for scoping reviews (PRISMA-ScR) checklist was used to guide the reporting of the review [ 42 ] and all stages were documented using the PRISMA-ScR flow chart [ 42 ].

Data extraction

A data extraction form was created in Covidence and used to extract study characteristics and to confirm the study’s relevance. This included specific details such as article author/s, title, year of publication, country, aim, population, setting, data collection methods and key findings relevant to the review question. The draft extraction form was modified as needed during the data extraction process.

Data analysis and presentation

Extracted data were summarised in tabular format (see Table  2 ). Consistent with the guidelines for the effective reporting of scoping reviews [ 43 ] and the JBI framework [ 35 ] the final stage of the review included thematic analysis of the key findings of the included studies. Study findings were imported into QSR NVivo with coding of each line of text. Descriptive codes reflected key aspects of the included studies related to the motivations and behaviours of women > 75 years about breast cancer screening.

In line with the reporting requirements for scoping reviews the search results for this review are presented in Fig.  1 [ 44 ].

PRISMA Flowchart. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71

A total of fourteen [ 14 ] studies were included in the review with studies from the following countries, US n  = 12 [ 33 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 ], UK n  = 1 [ 23 ] and France n  = 1 [ 56 ]. Sample sizes varied, with most containing fewer than 50 women ( n  = 8) [ 33 , 45 , 46 , 48 , 51 , 52 , 55 ]. Two had larger samples including a French study with 136 women (a sub-set of a larger sample) [ 56 ], and one mixed method study in the UK with a sample of 26 women undertaking interviews and 479 women completing surveys [ 23 ]. One study did not report exact numbers [ 50 ]. Three studies [ 47 , 53 , 54 ] were undertaken by a group of researchers based in the US utilising the same sample of women, however each of the papers focused on different primary outcomes. The samples in the included studies were recruited from a range of locations including primary medical care clinics, specialist medical clinics, University affiliated medical clinics, community-based health centres and community outreach clinics [ 47 , 53 , 54 ].

Data collection methods varied and included: quantitative ( n  = 8), qualitative ( n  = 5) and mixed methods ( n  = 1). A range of data collection tools and research designs were utilised; pre/post, pilot and cross-sectional surveys, interviews, and secondary analysis of existing data sets. Seven studies focused on the use of a Decision Aids (DAs), either in original or modified form, developed by Schonberg et al. [ 55 ] as a tool to increase knowledge about the harms and benefits of screening for older women [ 45 , 47 , 48 , 49 , 52 , 54 , 55 ]. Three studies focused on intention to screen [ 33 , 53 , 56 ], two on knowledge of, and attitudes to, screening [ 23 , 46 ], one on information needs relating to risks and benefits of screening discontinuation [ 51 ], and one on perceptions about discontinuation of screening and impact of social interactions on screening [ 50 ].

The three themes developed from the analysis of the included studies highlighted that decisions about screening were primarily influenced by: (1) knowledge of the benefits and harms of screening and their relationship to age; (2) underlying attitudes to the importance of cancer screening in women's lives; and (3) exposure to decision aids designed to facilitate informed decision-making. Each of these themes will be presented below drawing on the key findings of the appropriate studies. The full dataset of extracted data can be found in Table  2 .

Knowledge of the benefits and harms of screening ≥ 75 years

The decision to participate in routine mammography is influenced by individual differences in cognition and affect, interpersonal relationships, provider characteristics, and healthcare system variables. Women typically perceive mammograms as a positive, beneficial and routine component of care [ 46 ] and an important aspect of taking care of themselves [ 23 , 46 , 49 ]. One qualitative study undertaken in the US showed that few women had discussed mammography cessation or the potential harms of screening with their health care providers and some women reported they would insist on receiving mammography even without a provider recommendation to continue screening [ 46 ].

Studies suggested that ageing itself, and even poor health, were not seen as reasonable reasons for screening cessation. For many women, guidance from a health care provider was deemed the most important influence on decision-making [ 46 ]. Preferences for communication about risk and benefits were varied with one study reporting women would like to learn more about harms and risks and recommended that this information be communicated via physicians or other healthcare providers, included in brochures/pamphlets, and presented outside of clinical settings (e.g., in community-based seniors groups) [ 51 ]. Others reported that women were sometimes sceptical of expert and government recommendations [ 33 ] although some were happy to participate in discussions with health educators or care providers about breast cancer screening harms and benefits and potential cessation [ 52 ].

Underlying attitudes to the importance of cancer screening at and beyond 75 years

Included studies varied in describing the importance of screening, with some attitudes based on past attendance and some based on future intentions to screen. Three studies reported findings indicating that some women intended to continue screening after 75 years of age [ 23 , 45 , 46 ], with one study in the UK reporting that women supported an extension of the automatic recall indefinitely, regardless of age or health status. In this study, failure to invite older women to screen was interpreted as age discrimination [ 23 ]. The desire to continue screening beyond 75 was also highlighted in a study from France that found that 60% of the women ( n  = 136 aged ≥ 75) intended to pursue screening in the future, and 27 women aged ≥ 75, who had never undergone mammography previously (36%), intended to do so in the future [ 56 ]. In this same study, intentions to screen varied significantly [ 56 ]. There were no sociodemographic differences observed between screened and unscreened women with regard to level of education, income, health risk behaviour (smoking, alcohol consumption), knowledge about the importance and the process of screening, or psychological features (fear of the test, fear of the results, fear of the disease, trust in screening impact) [ 56 ]. Further analysis showed that three items were statistically correlated with a higher rate of attendance at screening: (1) screening was initiated by a physician; (2) the women had a consultation with a gynaecologist during the past 12 months; and (3) the women had already undergone at least five screening mammograms. Analysis highlighted that although average income, level of education, psychological features or other types of health risk behaviours did not impact screening intention, having a mammogram previously impacted likelihood of ongoing screening. There was no information provided that explained why women who had not previously undergone screening might do so in the future.

A mixed methods study in the UK reported similar findings [ 23 ]. Utilising interviews ( n  = 26) and questionnaires ( n  = 479) with women ≥ 70 years (median age 75 years) the overwhelming result (90.1%) was that breast screening should be offered to all women indefinitely regardless of age, health status or fitness [ 23 ], and that many older women were keen to continue screening. Both the interview and survey data confirmed women were uncertain about eligibility for breast screening. The survey data showed that just over half the women (52.9%) were unaware that they could request mammography or knew how to access it. Key reasons for screening discontinuation were not being invited for screening (52.1%) and not knowing about self-referral (35.1%).

Women reported that not being invited to continue screening sent messages that screening was no longer important or required for this age group [ 23 ]. Almost two thirds of the women completing the survey (61.6%) said they would forget to attend screening without an invitation. Other reasons for screening discontinuation included transport difficulties (25%) and not wishing to burden family members (24.7%). By contrast, other studies have reported that women do not endorse discontinuation of screening mammography due to advancing age or poor health, but some may be receptive to reducing screening frequency on recommendation from their health care provider [ 46 , 51 ].

Use of Decision Aids (DAs) to improve knowledge and guide screening decision-making

Many women reported poor knowledge about the harms and benefits of screening with studies identifying an important role for DAs. These aids have been shown to be effective in improving knowledge of the harms and benefits of screening [ 45 , 54 , 55 ] including for women with low educational attainment; as compared to women with high educational attainment [ 47 ]. DAs can increase knowledge about screening [ 47 , 49 ] and may decrease the intention to continue screening after the recommended age [ 45 , 52 , 54 ]. They can be used by primary care providers to support a conversation about breast screening intention and reasons for discontinuing screening. In one pilot study undertaken in the US using a DA, 5 of the 8 women (62.5%) indicated they intended to continue to receive mammography; however, 3 participants planned to get them less often [ 45 ]. When asked whether they thought their physician would want them to get a mammogram, 80% said “yes” on pre-test; this figure decreased to 62.5% after exposure to the DA. This pilot study suggests that the use of a decision-aid may result in fewer women ≥ 75 years old continuing to screen for breast cancer [ 45 ].

Similar findings were evident in two studies drawing on the same data undertaken in the US [ 48 , 53 ]. Using a larger sample ( n  = 283), women’s intentions to screen prior to a visit with their primary care provider and then again after exposure to the DA were compared. Results showed that 21.7% of women reduced their intention to be screened, 7.9% increased their intentions to be screened, and 70.4% did not change. Compared to those who had no change or increased their screening intentions, women who had a decrease in screening intention were significantly less likely to receive screening after 18 months. Generally, studies have shown that women aged 75 and older find DAs acceptable and helpful [ 47 , 48 , 49 , 55 ] and using them had the potential to impact on a women’s intention to screen [ 55 ].

Cadet and colleagues [ 49 ] explored the impact of educational attainment on the use of DAs. Results highlight that education moderates the utility of these aids; women with lower educational attainment were less likely to understand all the DA’s content (46.3% vs 67.5%; P < 0.001); had less knowledge of the benefits and harms of mammography (adjusted mean ± standard error knowledge score, 7.1 ± 0.3 vs 8.1 ± 0.3; p < 0.001); and were less likely to have their screening intentions impacted (adjusted percentage, 11.4% vs 19.4%; p  = 0.01).

This scoping review summarises current knowledge regarding motivations and screening behaviours of women over 75 years. The findings suggest that awareness of the importance of breast cancer screening among women aged ≥ 75 years is high [ 23 , 46 , 49 ] and that many women wish to continue screening regardless of perceived health status or age. This highlights the importance of focusing on motivation and screening behaviours and the multiple factors that influence ongoing participation in breast screening programs.

The generally high regard attributed to screening among women aged ≥ 75 years presents a complex challenge for health professionals who are focused on potential harm (from available national and international guidelines) in ongoing screening for women beyond age 75 [ 18 , 20 , 57 ]. Included studies highlight that many women relied on the advice of health care providers regarding the benefits and harms when making the decision to continue breast screening [ 46 , 51 , 52 ], however there were some that did not [ 33 ]. Having a previous pattern of screening was noted as being more significant to ongoing intention than any other identified socio-demographic feature [ 56 ]. This is perhaps because women will not readily forgo health care practices that they have always considered important and that retain ongoing importance for the broader population.

For those women who had discontinued screening after the age of 74 it was apparent that the rationale for doing so was not often based on choice or receipt of information, but rather on factors that impact decision-making in relation to screening. These included no longer receiving an invitation to attend, transport difficulties and not wanting to be a burden on relatives or friends [ 23 , 46 , 51 ]. Ongoing receipt of invitations to screen was an important aspect of maintaining a capacity to choose [ 23 ]. This was particularly important for those women who had been regular screeners.

Women over 75 require more information to make decisions regarding screening [ 23 , 52 , 54 , 55 ], however health care providers must also be aware that the element of choice is important for older women. Having a capacity to choose avoids any notion of discrimination based on age, health status, gender or sociodemographic difference and acknowledges the importance of women retaining control over their health [ 23 ]. It was apparent that some women would choose to continue screening at a reduced frequency if this option was available and that women should have access to information facilitating self-referral [ 23 , 45 , 46 , 51 , 56 ].

Decision-making regarding ongoing breast cancer screening has been facilitated via the use of Decision Aids (DAs) within clinical settings [ 54 , 55 ]. While some studies suggest that women will make a decision regardless of health status, the use of DAs has impacted women’s decision to screen. While this may have limited benefit for those of lower educational attainment [ 48 ] they have been effective in improving knowledge relating to harms and benefits of screening particularly where they have been used to support a conversation with women about the value of screening [ 54 , 55 , 56 ].

Women have identified challenges in engaging in conversations with health care providers regarding ongoing screening, because providers frequently draw on projections of life expectancy and over-diagnosis [ 17 , 51 ]. As a result, these conversations about screening after age 75 years often do not occur [ 46 ]. It is likely that health providers may need more support and guidance in leading these conversations. This may be through the use of DAs or standardised checklists. It may be possible to incorporate these within existing health preventive measures for this age group. The potential for advice regarding ongoing breast cancer screening to be available outside of clinical settings may provide important pathways for conversations with women regarding health choices. Provision of information and advice in settings such as community based seniors groups [ 51 ] offers a potential platform to broaden conversations and align sources of information, not only with health professionals but amongst women themselves. This may help to address any misconception regarding eligibility and access to services [ 23 ]. It may also be aligned with other health promotion and lifestyle messages provided to this age group.

Limitations of the review

The searches that formed the basis of this review were carried in June 2022. Although the search was comprehensive, we have only captured those studies that were published in the included databases from 2009. There may have been other studies published outside of these periods. We also limited the search to studies published in English with full-text availability.

The emphasis of a scoping review is on comprehensive coverage and synthesis of the key findings, rather than on a particular standard of evidence and, consequently a quality assessment of the included studies was not undertaken. This has resulted in the inclusion of a wide range of study designs and data collection methods. It is important to note that three studies included in the review drew on the same sample of women (283 over > 75)[ 49 , 53 , 54 ]. The results of this review provide valuable insights into motivations and behaviours for breast cancer screening for older women, however they should be interpreted with caution given the specific methodological and geographical limitations.

Conclusion and recommendations

This scoping review highlighted a range of key motivations and behaviours in relation to breast cancer screening for women ≥ 75 years of age. The results provide some insight into how decisions about screening continuation after 74 are made and how informed decision-making can be supported. Specifically, this review supports the following suggestions for further research and policy direction:

Further research regarding breast cancer screening motivations and behaviours for women over 75 would provide valuable insight for health providers delivering services to women in this age group.

Health providers may benefit from the broader use of decision aids or structured checklists to guide conversations with women over 75 regarding ongoing health promotion/preventive measures.

Providing health-based information in non-clinical settings frequented by women in this age group may provide a broader reach of information and facilitate choices. This may help to reduce any perception of discrimination based on age, health status or socio-demographic factors.

Availability of data and materials

All data generated or analysed during this study is included in this published article (see Table  2 above).

Cancer Australia, in their 2014 position statement, define “overdiagnosis” in the following way. ‘’Overdiagnosis’ from breast screening does not refer to error or misdiagnosis, but rather refers to breast cancer diagnosed by screening that would not otherwise have been diagnosed during a woman’s lifetime. “Overdiagnosis” includes all instances where cancers detected through screening (ductal carcinoma in situ or invasive breast cancer) might never have progressed to become symptomatic during a woman’s life, i.e., cancer that would not have been detected in the absence of screening. It is not possible to precisely predict at diagnosis, to which cancers overdiagnosis would apply.” (accessed 22. nd August 2022; https://www.canceraustralia.gov.au/resources/position-statements/overdiagnosis-mammographic-screening ).

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Acknowledgements

We would like to acknowledge Ange Hayden-Johns (expert librarian) who assisted with the development of the search criteria and undertook the relevant searches and Tejashree Kangutkar who assisted with some of the Covidence work.

This work was supported by funding from the Australian Government Department of Health and Aged Care (ID: Health/20–21/E21-10463).

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Virginia Dickson-Swift, Joanne Adams & Evelien Spelten

Care Economy Research Institute, La Trobe University, Wodonga, Australia

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Olivia Newton-John Cancer Wellness and Research Centre, Austin Health, Melbourne, Australia

Carlene Wilson & Eva Yuen

Melbourne School of Population and Global Health, Melbourne University, Melbourne, Australia

Carlene Wilson

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Institute for Health Transformation, Deakin University, Burwood, Australia

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VDS conceived and designed the scoping review. VDS & JA developed the search strategy with librarian support, and all authors (VDS, JA, ES, IB, CW, EY) participated in the screening and data extraction stages and assisted with writing the review. All authors provided editorial support and read and approved the final manuscript prior to submission.

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Dickson-Swift, V., Adams, J., Spelten, E. et al. Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review. BMC Women's Health 24 , 256 (2024). https://doi.org/10.1186/s12905-024-03094-z

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Received : 06 September 2023

Accepted : 15 April 2024

Published : 24 April 2024

DOI : https://doi.org/10.1186/s12905-024-03094-z

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