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Neal Haddaway

October 19th, 2020, 8 common problems with literature reviews and how to fix them.

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Literature reviews are an integral part of the process and communication of scientific research. Whilst systematic reviews have become regarded as the highest standard of evidence synthesis, many literature reviews fall short of these standards and may end up presenting biased or incorrect conclusions. In this post, Neal Haddaway highlights 8 common problems with literature review methods, provides examples for each and provides practical solutions for ways to mitigate them.

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Researchers regularly review the literature – it’s an integral part of day-to-day research: finding relevant research, reading and digesting the main findings, summarising across papers, and making conclusions about the evidence base as a whole. However, there is a fundamental difference between brief, narrative approaches to summarising a selection of studies and attempting to reliably and comprehensively summarise an evidence base to support decision-making in policy and practice.

So-called ‘evidence-informed decision-making’ (EIDM) relies on rigorous systematic approaches to synthesising the evidence. Systematic review has become the highest standard of evidence synthesis and is well established in the pipeline from research to practice in the field of health . Systematic reviews must include a suite of specifically designed methods for the conduct and reporting of all synthesis activities (planning, searching, screening, appraising, extracting data, qualitative/quantitative/mixed methods synthesis, writing; e.g. see the Cochrane Handbook ). The method has been widely adapted into other fields, including environment (the Collaboration for Environmental Evidence ) and social policy (the Campbell Collaboration ).

Despite the growing interest in systematic reviews, traditional approaches to reviewing the literature continue to persist in contemporary publications across disciplines. These reviews, some of which are incorrectly referred to as ‘systematic’ reviews, may be susceptible to bias and as a result, may end up providing incorrect conclusions. This is of particular concern when reviews address key policy- and practice- relevant questions, such as the ongoing COVID-19 pandemic or climate change.

These limitations with traditional literature review approaches could be improved relatively easily with a few key procedures; some of them not prohibitively costly in terms of skill, time or resources.

In our recent paper in Nature Ecology and Evolution , we highlight 8 common problems with traditional literature review methods, provide examples for each from the field of environmental management and ecology, and provide practical solutions for ways to mitigate them.

There is a lack of awareness and appreciation of the methods needed to ensure systematic reviews are as free from bias and as reliable as possible: demonstrated by recent, flawed, high-profile reviews. We call on review authors to conduct more rigorous reviews, on editors and peer-reviewers to gate-keep more strictly, and the community of methodologists to better support the broader research community. Only by working together can we build and maintain a strong system of rigorous, evidence-informed decision-making in conservation and environmental management.

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About the author

Neal Haddaway is a Senior Research Fellow at the Stockholm Environment Institute, a Humboldt Research Fellow at the Mercator Research Institute on Global Commons and Climate Change, and a Research Associate at the Africa Centre for Evidence. He researches evidence synthesis methodology and conducts systematic reviews and maps in the field of sustainability and environmental science. His main research interests focus on improving the transparency, efficiency and reliability of evidence synthesis as a methodology and supporting evidence synthesis in resource constrained contexts. He co-founded and coordinates the Evidence Synthesis Hackathon (www.eshackathon.org) and is the leader of the Collaboration for Environmental Evidence centre at SEI. @nealhaddaway

Why is mission creep a problem and not a legitimate response to an unexpected finding in the literature? Surely the crucial points are that the review’s scope is stated clearly and implemented rigorously, not when the scope was finalised.

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#9. Most of them are terribly boring. Which is why I teach students how to make them engaging…and useful.

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Eight problems with literature reviews and how to fix them

Affiliations.

• 1 Mercator Research Institute on Climate Change and Global Commons, Berlin, Germany. [email protected].
• 2 Stockholm Environment Institute, Stockholm, Sweden. [email protected].
• 3 Africa Centre for Evidence, University of Johannesburg, Johannesburg, South Africa. [email protected].
• 4 College of Medicine and Health, Exeter University, Exeter, UK.
• 5 Department of Zoology, University of Cambridge, Cambridge, UK.
• 6 School of Biological Sciences, University of East Anglia, Norwich, UK.
• 7 Department of Biological Sciences, Royal Holloway University of London, Egham, UK.
• 8 Stockholm Environment Institute, Stockholm, Sweden.
• 9 Department of Zoology, University of Oxford, Oxford, UK.
• 10 Collaboration for Environmental Evidence, UK Centre, School of Natural Sciences, Bangor University, Bangor, UK.
• 11 Liljus ltd, London, UK.
• 12 Department of Forest Sciences, University of Helsinki, Helsinki, Finland.
• 13 Evidence Synthesis Lab, School of Natural and Environmental Sciences, University of Newcastle, Newcastle-upon-Tyne, UK.
• PMID: 33046871
• DOI: 10.1038/s41559-020-01295-x

Traditional approaches to reviewing literature may be susceptible to bias and result in incorrect decisions. This is of particular concern when reviews address policy- and practice-relevant questions. Systematic reviews have been introduced as a more rigorous approach to synthesizing evidence across studies; they rely on a suite of evidence-based methods aimed at maximizing rigour and minimizing susceptibility to bias. Despite the increasing popularity of systematic reviews in the environmental field, evidence synthesis methods continue to be poorly applied in practice, resulting in the publication of syntheses that are highly susceptible to bias. Recognizing the constraints that researchers can sometimes feel when attempting to plan, conduct and publish rigorous and comprehensive evidence syntheses, we aim here to identify major pitfalls in the conduct and reporting of systematic reviews, making use of recent examples from across the field. Adopting a 'critical friend' role in supporting would-be systematic reviews and avoiding individual responses to police use of the 'systematic review' label, we go on to identify methodological solutions to mitigate these pitfalls. We then highlight existing support available to avoid these issues and call on the entire community, including systematic review specialists, to work towards better evidence syntheses for better evidence and better decisions.

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• Published: 12 October 2020

Eight problems with literature reviews and how to fix them

• Neal R. Haddaway   ORCID: orcid.org/0000-0003-3902-2234 1 , 2 , 3 ,
• Alison Bethel 4 ,
• Lynn V. Dicks 5 , 6 ,
• Julia Koricheva   ORCID: orcid.org/0000-0002-9033-0171 7 ,
• Biljana Macura   ORCID: orcid.org/0000-0002-4253-1390 2 ,
• Gillian Petrokofsky 8 ,
• Andrew S. Pullin 9 ,
• Sini Savilaakso   ORCID: orcid.org/0000-0002-8514-8105 10 , 11 &
• Gavin B. Stewart   ORCID: orcid.org/0000-0001-5684-1544 12  

Nature Ecology & Evolution volume  4 ,  pages 1582–1589 ( 2020 ) Cite this article

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• Conservation biology
• Environmental impact

An Author Correction to this article was published on 19 October 2020

This article has been updated

Traditional approaches to reviewing literature may be susceptible to bias and result in incorrect decisions. This is of particular concern when reviews address policy- and practice-relevant questions. Systematic reviews have been introduced as a more rigorous approach to synthesizing evidence across studies; they rely on a suite of evidence-based methods aimed at maximizing rigour and minimizing susceptibility to bias. Despite the increasing popularity of systematic reviews in the environmental field, evidence synthesis methods continue to be poorly applied in practice, resulting in the publication of syntheses that are highly susceptible to bias. Recognizing the constraints that researchers can sometimes feel when attempting to plan, conduct and publish rigorous and comprehensive evidence syntheses, we aim here to identify major pitfalls in the conduct and reporting of systematic reviews, making use of recent examples from across the field. Adopting a ‘critical friend’ role in supporting would-be systematic reviews and avoiding individual responses to police use of the ‘systematic review’ label, we go on to identify methodological solutions to mitigate these pitfalls. We then highlight existing support available to avoid these issues and call on the entire community, including systematic review specialists, to work towards better evidence syntheses for better evidence and better decisions.

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Acknowledgements

We thank C. Shortall from Rothamstead Research for useful discussions on the topic.

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Mercator Research Institute on Climate Change and Global Commons, Berlin, Germany

Neal R. Haddaway

Stockholm Environment Institute, Stockholm, Sweden

Neal R. Haddaway & Biljana Macura

Africa Centre for Evidence, University of Johannesburg, Johannesburg, South Africa

College of Medicine and Health, Exeter University, Exeter, UK

Alison Bethel

Department of Zoology, University of Cambridge, Cambridge, UK

Lynn V. Dicks

School of Biological Sciences, University of East Anglia, Norwich, UK

Department of Biological Sciences, Royal Holloway University of London, Egham, UK

Julia Koricheva

Department of Zoology, University of Oxford, Oxford, UK

Gillian Petrokofsky

Collaboration for Environmental Evidence, UK Centre, School of Natural Sciences, Bangor University, Bangor, UK

• Andrew S. Pullin

Liljus ltd, London, UK

Sini Savilaakso

Department of Forest Sciences, University of Helsinki, Helsinki, Finland

Evidence Synthesis Lab, School of Natural and Environmental Sciences, University of Newcastle, Newcastle-upon-Tyne, UK

Gavin B. Stewart

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Haddaway, N.R., Bethel, A., Dicks, L.V. et al. Eight problems with literature reviews and how to fix them. Nat Ecol Evol 4 , 1582–1589 (2020). https://doi.org/10.1038/s41559-020-01295-x

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Writing A Literature Review  

7 common (and costly) mistakes to avoid ☠️.

By: David Phair (PhD) | Reviewed By: Dr Eunice Rautenbach | June 2021

Crafting a high-quality literature review is critical to earning marks and developing a strong dissertation, thesis or research project. But, it’s no simple task. Here at Grad Coach, we’ve reviewed thousands of literature reviews and seen a recurring set of mistakes and issues that drag students down.

In this post, we’ll unpack 7 common literature review mistakes , so that you can avoid these pitfalls and submit a literature review that impresses.

Overview: 7 Literature Review Killers

• Over-reliance on low-quality sources
• A lack of landmark/seminal literature
• A lack of current literature
• Description instead of integration and synthesis
• Irrelevant or unfocused content
• Poor chapter structure and layout
• Plagiarism and poor referencing

Mistake #1: Over-reliance on low-quality sources

One of the most common issues we see in literature reviews is an over-reliance on low-quality sources . This includes a broad collection of non-academic sources like blog posts, opinion pieces, publications by advocacy groups and daily news articles.

Of course, just because a piece of content takes the form of a blog post doesn’t automatically mean it is low-quality . However, it’s (generally) unlikely to be as academically sound (i.e., well-researched, objective and scientific) as a journal article, so you need to be a lot more sceptical when considering this content and make sure that it has a strong, well-reasoned foundation. As a rule of thumb, your literature review shouldn’t rely heavily on these types of content – they should be used sparingly.

Ideally, your literature review should be built on a strong base of journal articles , ideally from well-recognised, peer-reviewed journals with a high H index . You can also draw on books written by well-established subject matter experts. When considering books, try to focus on those that are published by academic publishers , for example, Cambridge University Press, Oxford University Press and Routledge. You can also draw on government websites, provided they have a strong reputation for objectivity and data quality. As with any other source, be wary of any government website that seems to be pushing an agenda.

Source: UCCS

As I mentioned, this doesn’t mean that your literature review can’t include the occasional blog post or news article. These types of content have their place , especially when setting the context for your study. For example, you may want to cite a collection of newspaper articles to demonstrate the emergence of a recent trend. However, your core arguments and theoretical foundations shouldn’t rely on these. Build your foundation on credible academic literature to ensure that your study stands on the proverbial shoulders of giants.

Mistake #2: A lack of landmark/seminal literature

Another issue we see in weaker literature reviews is an absence of landmark literature for the research topic . Landmark literature (sometimes also referred to as seminal or pivotal work) refers to the articles that initially presented an idea of great importance or influence within a particular discipline. In other words, the articles that put the specific area of research “on the map”, so to speak.

The reason for the absence of landmark literature in poor literature reviews is most commonly that either the student isn’t aware of the literature (because they haven’t sufficiently immersed themselves in the existing research), or that they feel that they should only present the most up to date studies. Whatever the cause, it’s a problem, as a good literature review should always acknowledge the seminal writing in the field.

But, how do you find landmark literature?

Well, you can usually spot these by searching for the topic in Google Scholar and identifying the handful of articles with high citation counts. They’ll also be the studies most commonly cited in textbooks and, of course, Wikipedia (but please don’t use Wikipedia as a source!).

So, when you’re piecing your literature review together, remember to pay homage to the classics , even if only briefly. Seminal works are the theoretical foundation of a strong literature review.

Mistake #3: A lack of current literature

As I mentioned, it’s incredibly important to acknowledge the landmark studies and research in your literature review. However, a strong literature review should also incorporate the current literature . It should, ideally, compare and contrast the “classics” with the more up to date research, and briefly comment on the evolution.

Of course, you don’t want to burn precious word count providing an in-depth history lesson regarding the evolution of the topic (unless that’s one of your research aims, of course), but you should at least acknowledge any key differences between the old and the new.

But, how do you find current literature?

To find current literature in your research area, you can once again use Google Scholar by simply selecting the “Since…” link on the left-hand side. Depending on your area of study, recent may mean the last year or two, or a fair deal longer.

So, as you develop your catalogue of literature, remember to incorporate both the classics and the more up to date research. By doing this, you’ll achieve a comprehensive literature base that is both well-rooted in tried and tested theory and current.

Mistake #4: Description instead of integration and synthesis

This one is a big one. And, unfortunately, it’s a very common one. In fact, it’s probably the most common issue we encounter in literature reviews.

All too often, students think that a literature review is simply a summary of what each researcher has said. A lengthy, detailed “he said, she said”. This is incorrect . A good literature review needs to go beyond just describing all the relevant literature. It needs to integrate the existing research to show how it all fits together.

A good literature review should also highlight what areas don’t fit together , and which pieces are missing . In other words, what do researchers disagree on and why might that be. It’s seldom the case that everyone agrees on everything because the “truth” is typically very nuanced and intricate in reality. A strong literature review is a balanced one , with a mix of different perspectives and findings that give the reader a clear view of the current state of knowledge.

A good analogy is that of a jigsaw puzzle. The various findings and arguments from each piece of literature form the individual puzzle pieces, and you then put these together to develop a picture of the current state of knowledge . Importantly, that puzzle will in all likelihood have pieces that don’t fit well together, and pieces that are missing. It’s seldom a pretty puzzle!

By the end of this process of critical review and synthesis of the existing literature , it should be clear what’s missing – in other words, the gaps that exist in the current research . These gaps then form the foundation for your proposed study. In other words, your study will attempt to contribute a missing puzzle piece (or get two pieces to fit together).

So, when you’re crafting your literature review chapter, remember that this chapter needs to go well beyond a basic description of the existing research – it needs to synthesise it (bring it all together) and form the foundation for your study.

Mistake #5: Irrelevant or unfocused content

Another common mistake we see in literature review chapters is quite simply the inclusion of irrelevant content . Some chapters can waffle on for pages and pages and leave the reader thinking, “so what?”

So, how do you decide what’s relevant?

Well, to ensure you stay on-topic and focus, you need to revisit your research aims, objectives and research questions . Remember, the purpose of the literature review is to build the theoretical foundation that will help you achieve your research aims and objectives, and answer your research questions . Therefore, relevant content is the relatively narrow body of content that relates directly to those three components .

Let’s look at an example.

If your research aims to identify factors that cultivate employee loyalty and commitment, your literature review needs to focus on existing research that identifies such factors. Simple enough, right? Well, during your review process, you will invariably come across plenty of research relating to employee loyalty and commitment, including things like:

• The benefits of high employee commitment
• The different types of commitment
• The impact of commitment on corporate culture
• The links between commitment and productivity

While all of these relate to employee commitment, they’re not focused on the research aims , objectives and questions, as they’re not identifying factors that foster employee commitment. Of course, they may still be useful in helping you justify your topic, so they’ll likely have a place somewhere in your dissertation or thesis. However, for your literature review, you need to keep things focused.

So, as you work through your literature review, always circle back to your research aims, objective and research questions and use them as a litmus test for article relevance.

Need a helping hand?

Mistake #6: Poor chapter structure and layout

Even the best content can fail to earn marks when the literature review chapter is poorly structured . Unfortunately, this is a fairly common issue, resulting in disjointed, poorly-flowing arguments that are difficult for the reader (the marker…) to follow.

The most common reason that students land up with a poor structure is that they start writing their literature review chapter without a plan or structure . Of course, as we’ve discussed before, writing is a form of thinking , so you don’t need to plan out every detail before you start writing. However, you should at least have an outline structure penned down before you hit the keyboard.

So, how should you structure your literature review?

We’ve covered literature review structure in detail previously , so I won’t go into it here. However, as a quick overview, your literature review should consist of three core sections :

• The introduction section – where you outline your topic, introduce any definitions and jargon and define the scope of your literature review.
• The body section – where you sink your teeth into the existing research. This can be arranged in various ways (e.g. thematically, chronologically or methodologically).
• The conclusion section – where you present the key takeaways and highlight the research gap (or gaps), which lays the foundation for your study.

Another reason that students land up with a poor structure is that they start writing their literature chapter prematurely . In other words, they start writing before they’ve finished digesting the literature. This is a costly mistake, as it always results in extensive rewriting , which takes a lot longer than just doing it one step at a time. Again, it’s completely natural to do a little extra reading as thoughts crop up during the writing process, but you should complete your core reading before you start writing.

Long story short – don’t start writing your literature review without some sort of structural plan. This structure can (and likely will) evolve as you write, but you need some sort of outline as a starting point. Pro tip – check out our free literature review template to fast-track your structural outline.

Mistake #7: Plagiarism and poor referencing

This one is by far the most unforgivable literature review mistake, as it carries one of the heaviest penalties , while it is so easily avoidable .

All too often, we encounter literature reviews that, at first glance, look pretty good. However, a quick run through a plagiarism checker and it quickly becomes apparent that the student has failed to fully digest the literature they’ve reviewed and put it into their own words.

“But, the original author said it perfectly…”

I get it – sometimes the way an author phrased something is “just perfect” and you can’t find a better way to say it. In those (pretty rare) cases, you can use direct quotes (and a citation, of course). However, for the vast majority of your literature review, you need to put things into your own words .

The good news is that if you focus on integrating and synthesising the literature (as I mentioned in point 3), you shouldn’t run into this issue too often, as you’ll naturally be writing about the relationships between studies , not just about the studies themselves. Remember, if you can’t explain something simply (in your own words), you don’t really understand it.

A related issue that we see quite often is plain old-fashioned poor referencing . This can include citation and reference formatting issues (for example, Harvard or APA style errors), or just a straight out lack of references . In academic writing, if you fail to reference a source, you are effectively claiming the work as your own, which equates to plagiarism. This might seem harmless, but plagiarism is a serious form of academic misconduct and could cost you a lot more than just a few marks.

So, when you’re writing up your literature review, remember that you need to digest the content and put everything into your own words. You also need to reference the sources of any and all ideas, theories, frameworks and models you draw on.

Recap: 7 Literature Review Mistakes

We’ve covered a lot of ground in this post. Let’s quickly recap on the 7 most common literature review mistakes.

Now that you’re aware of these common mistakes, be sure to also check out our literature review walkthrough video , where to dissect an actual literature review chapter . This will give you a clear picture of what a high-quality literature review looks like and hopefully provide some inspiration for your own.

If you have any questions about these literature review mistakes, leave a comment below and we’ll do our best to answer. If you’re interested in private coaching, book an initial consultation with a friendly coach to discuss how we can move you forward.

Psst… there’s more!

This post is an extract from our bestselling short course, Literature Review Bootcamp . If you want to work smart, you don't want to miss this .

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10 Comments

Dear GradCoach,

Thank you for making our uni student lives better. Could you kindly do a video on how to use your literature review excel template? I am sure a lot of students would appreciate that.

Thank you so much for this inlightment concerning the mistakes that should be avoided while writing a literature review chapter. It is concise and precise. You have mentioned that this chapter include three main parts; introduction, body, and conclusion. Is the theoritical frameworke considered a part of the literature review chapter, or it should be written in a seperate chapter? If it is included in the literature review, should it take place at the beginning, the middle or at the end of the chapter? Thank you one again for “unpacking” things for us.

Hi I would enjoy the video on lit review. You mentioned cataloging references, I would like the template for excel. Would you please sent me this template.

on the plagiarism and referencing what is the correct way to cite the words said by the author . What are the different methods you can use

its clear, precise and understandable many thanks affectionately yours’ Godfrey

Thanks for this wonderful resource! I am final year student and will be commencing my dissertation work soon. This course has significantly improved my understanding of dissertation and has greater value in terms of its practical applicability compared to other literature works and articles out there on the internet. I will advice my colleague students more especially first time thesis writers to make good use of this course. It’s explained in simple, plain grammar and you will greatly appreciate it.

Thanks. A lot. This was excellent. I really enjoyed it. Again thank you.

The information in this article is very useful for students and very interesting I really like your article thanks for sharing this post!

Thank you for putting more knowledge in us. Thank you for using simple you’re bless.

This article is really useful. Thanks a lot for sharing this knowledge. Please continue the journey of sharing and facilitating the young researchers.

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Scholarly Writing pp 41–70 Cite as

Writing the Literature Review: Common Mistakes and Best Practices

• Kelly Heider 3  
• First Online: 21 November 2023

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Part of the book series: Springer Texts in Education ((SPTE))

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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15 Writing a Literature Review: Overcoming Challenges

Literature reviews are often the source of a lot of anxiety for graduate students – they can seem overwhelming, and the expectations for what should be accomplished can be ambiguous. The concept of “the literature review” itself is likely intimidating for graduate students, in part, because of the connotations the different parts of this title evoke when placed together.  First, “the” erroneously signifies that your literature review is one standalone thing, as opposed to something that is integrated and referred to throughout the entire thesis or article. A literature review should not simply be a separate piece completed at the beginning of the research/writing process and then only marginally edited at the end.

Second, the statement “the literature” also carries a potentially intimidating air about it. Literature signifies something of high culture and pretentious importance – impossible to attain, broad in scope, and just frustratingly out of reach.

Finally, “review” gives off the assumption that the reviewer is in the position of a passive audience member who looks on from the outside at all that is going on in the “literature” – not much activity or agency in this positioning.

In accomplishing this task, grad students are often warned against simply “summarizing” a series of books and articles, but what it means to interact and bring together literatures in a “critical” manner is sometimes not well instructed.

Researchers may wonder:

• Where do I start?
• What do I include vs. exclude?
• How do I insert myself into the literature review?
• Do I have anything to contribute?
• How do I organize large bodies of literature?
• How do I negotiate power relations and complexities?
• Who do I engage with vs. ignore?

Complete the following reflection exercise to think about how you perceive literature reviews.

Note: this activity is accessible via the web version of this OER but not via the PDF version. The questions posed are:

• When you think of doing a literature review, what is it like for you? What image or metaphor comes to mind?
• How is the literature represented? What image or metaphor comes to mind?
• What is the researcher doing? What image or metaphor comes to mind?
• How powerfully is the researcher represented? What image or metaphor comes to mind?

When Kamler and Thomson asked graduate students the questions in the above reflection activity, students produced some interesting responses. Graduate students conceptualized the literature as “a chaotic whirlpool,” “an ocean full of sharks”, or a “stormy ocean.”  Likewise, students conceptualized the researcher as “trying to swim with concrete blocks on my feet,” “tossed between currents in the sea, all pulling in different directions”, or “trying to persuade an octopus into a glass.” [1]

Do any of these sound like your own reflections? All of these metaphors speak to a common feeling of being lost, overwhelmed, drowning, and powerless. The obstacle is large and unruly, and the researcher is active, struggling, plugging along, and doing what needs to be done in the face of this huge task.

• Barbara Kamler and Pat Thomson, Helping Doctoral Students Write: Pedagogies for Supervision (London: Routledge, 2006). ↵

McMaster University's Graduate Thesis Toolkit Copyright © 2021 by McMaster University is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

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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.

• USC Libraries
• Research Guides

Organizing Your Social Sciences Research Paper

• 5. The Literature Review
• Purpose of Guide
• Design Flaws to Avoid
• Independent and Dependent Variables
• Glossary of Research Terms
• Reading Research Effectively
• Narrowing a Topic Idea
• Broadening a Topic Idea
• Extending the Timeliness of a Topic Idea
• Academic Writing Style
• Applying Critical Thinking
• Choosing a Title
• Making an Outline
• Paragraph Development
• Research Process Video Series
• Executive Summary
• The C.A.R.S. Model
• Background Information
• The Research Problem/Question
• Theoretical Framework
• Citation Tracking
• Content Alert Services
• Evaluating Sources
• Primary Sources
• Secondary Sources
• Tiertiary Sources
• Scholarly vs. Popular Publications
• Qualitative Methods
• Quantitative Methods
• Insiderness
• Using Non-Textual Elements
• Limitations of the Study
• Common Grammar Mistakes
• Writing Concisely
• Avoiding Plagiarism
• Footnotes or Endnotes?
• Further Readings
• Generative AI and Writing
• USC Libraries Tutorials and Other Guides
• Bibliography

A literature review surveys prior research published in books, scholarly articles, and any other sources relevant to a particular issue, area of research, or theory, and by so doing, provides a description, summary, and critical evaluation of these works in relation to the research problem being investigated. Literature reviews are designed to provide an overview of sources you have used in researching a particular topic and to demonstrate to your readers how your research fits within existing scholarship about the topic.

Fink, Arlene. Conducting Research Literature Reviews: From the Internet to Paper . Fourth edition. Thousand Oaks, CA: SAGE, 2014.

Importance of a Good Literature Review

A literature review may consist of simply a summary of key sources, but in the social sciences, a literature review usually has an organizational pattern and combines both summary and synthesis, often within specific conceptual categories . A summary is a recap of the important information of the source, but a synthesis is a re-organization, or a reshuffling, of that information in a way that informs how you are planning to investigate a research problem. The analytical features of a literature review might:

• Give a new interpretation of old material or combine new with old interpretations,
• Trace the intellectual progression of the field, including major debates,
• Depending on the situation, evaluate the sources and advise the reader on the most pertinent or relevant research, or
• Usually in the conclusion of a literature review, identify where gaps exist in how a problem has been researched to date.

Given this, the purpose of a literature review is to:

• Place each work in the context of its contribution to understanding the research problem being studied.
• Describe the relationship of each work to the others under consideration.
• Identify new ways to interpret prior research.
• Reveal any gaps that exist in the literature.
• Resolve conflicts amongst seemingly contradictory previous studies.
• Identify areas of prior scholarship to prevent duplication of effort.
• Point the way in fulfilling a need for additional research.
• Locate your own research within the context of existing literature [very important].

Fink, Arlene. Conducting Research Literature Reviews: From the Internet to Paper. 2nd ed. Thousand Oaks, CA: Sage, 2005; Hart, Chris. Doing a Literature Review: Releasing the Social Science Research Imagination . Thousand Oaks, CA: Sage Publications, 1998; Jesson, Jill. Doing Your Literature Review: Traditional and Systematic Techniques . Los Angeles, CA: SAGE, 2011; Knopf, Jeffrey W. "Doing a Literature Review." PS: Political Science and Politics 39 (January 2006): 127-132; Ridley, Diana. The Literature Review: A Step-by-Step Guide for Students . 2nd ed. Los Angeles, CA: SAGE, 2012.

Types of Literature Reviews

It is important to think of knowledge in a given field as consisting of three layers. First, there are the primary studies that researchers conduct and publish. Second are the reviews of those studies that summarize and offer new interpretations built from and often extending beyond the primary studies. Third, there are the perceptions, conclusions, opinion, and interpretations that are shared informally among scholars that become part of the body of epistemological traditions within the field.

In composing a literature review, it is important to note that it is often this third layer of knowledge that is cited as "true" even though it often has only a loose relationship to the primary studies and secondary literature reviews. Given this, while literature reviews are designed to provide an overview and synthesis of pertinent sources you have explored, there are a number of approaches you could adopt depending upon the type of analysis underpinning your study.

Argumentative Review This form examines literature selectively in order to support or refute an argument, deeply embedded assumption, or philosophical problem already established in the literature. The purpose is to develop a body of literature that establishes a contrarian viewpoint. Given the value-laden nature of some social science research [e.g., educational reform; immigration control], argumentative approaches to analyzing the literature can be a legitimate and important form of discourse. However, note that they can also introduce problems of bias when they are used to make summary claims of the sort found in systematic reviews [see below].

Integrative Review Considered a form of research that reviews, critiques, and synthesizes representative literature on a topic in an integrated way such that new frameworks and perspectives on the topic are generated. The body of literature includes all studies that address related or identical hypotheses or research problems. A well-done integrative review meets the same standards as primary research in regard to clarity, rigor, and replication. This is the most common form of review in the social sciences.

Historical Review Few things rest in isolation from historical precedent. Historical literature reviews focus on examining research throughout a period of time, often starting with the first time an issue, concept, theory, phenomena emerged in the literature, then tracing its evolution within the scholarship of a discipline. The purpose is to place research in a historical context to show familiarity with state-of-the-art developments and to identify the likely directions for future research.

Methodological Review A review does not always focus on what someone said [findings], but how they came about saying what they say [method of analysis]. Reviewing methods of analysis provides a framework of understanding at different levels [i.e. those of theory, substantive fields, research approaches, and data collection and analysis techniques], how researchers draw upon a wide variety of knowledge ranging from the conceptual level to practical documents for use in fieldwork in the areas of ontological and epistemological consideration, quantitative and qualitative integration, sampling, interviewing, data collection, and data analysis. This approach helps highlight ethical issues which you should be aware of and consider as you go through your own study.

Systematic Review This form consists of an overview of existing evidence pertinent to a clearly formulated research question, which uses pre-specified and standardized methods to identify and critically appraise relevant research, and to collect, report, and analyze data from the studies that are included in the review. The goal is to deliberately document, critically evaluate, and summarize scientifically all of the research about a clearly defined research problem . Typically it focuses on a very specific empirical question, often posed in a cause-and-effect form, such as "To what extent does A contribute to B?" This type of literature review is primarily applied to examining prior research studies in clinical medicine and allied health fields, but it is increasingly being used in the social sciences.

Theoretical Review The purpose of this form is to examine the corpus of theory that has accumulated in regard to an issue, concept, theory, phenomena. The theoretical literature review helps to establish what theories already exist, the relationships between them, to what degree the existing theories have been investigated, and to develop new hypotheses to be tested. Often this form is used to help establish a lack of appropriate theories or reveal that current theories are inadequate for explaining new or emerging research problems. The unit of analysis can focus on a theoretical concept or a whole theory or framework.

NOTE : Most often the literature review will incorporate some combination of types. For example, a review that examines literature supporting or refuting an argument, assumption, or philosophical problem related to the research problem will also need to include writing supported by sources that establish the history of these arguments in the literature.

Baumeister, Roy F. and Mark R. Leary. "Writing Narrative Literature Reviews."  Review of General Psychology 1 (September 1997): 311-320; Mark R. Fink, Arlene. Conducting Research Literature Reviews: From the Internet to Paper . 2nd ed. Thousand Oaks, CA: Sage, 2005; Hart, Chris. Doing a Literature Review: Releasing the Social Science Research Imagination . Thousand Oaks, CA: Sage Publications, 1998; Kennedy, Mary M. "Defining a Literature." Educational Researcher 36 (April 2007): 139-147; Petticrew, Mark and Helen Roberts. Systematic Reviews in the Social Sciences: A Practical Guide . Malden, MA: Blackwell Publishers, 2006; Torracro, Richard. "Writing Integrative Literature Reviews: Guidelines and Examples." Human Resource Development Review 4 (September 2005): 356-367; Rocco, Tonette S. and Maria S. Plakhotnik. "Literature Reviews, Conceptual Frameworks, and Theoretical Frameworks: Terms, Functions, and Distinctions." Human Ressource Development Review 8 (March 2008): 120-130; Sutton, Anthea. Systematic Approaches to a Successful Literature Review . Los Angeles, CA: Sage Publications, 2016.

Structure and Writing Style

I.  Thinking About Your Literature Review

The structure of a literature review should include the following in support of understanding the research problem :

• An overview of the subject, issue, or theory under consideration, along with the objectives of the literature review,
• Division of works under review into themes or categories [e.g. works that support a particular position, those against, and those offering alternative approaches entirely],
• An explanation of how each work is similar to and how it varies from the others,
• Conclusions as to which pieces are best considered in their argument, are most convincing of their opinions, and make the greatest contribution to the understanding and development of their area of research.

The critical evaluation of each work should consider :

• Provenance -- what are the author's credentials? Are the author's arguments supported by evidence [e.g. primary historical material, case studies, narratives, statistics, recent scientific findings]?
• Methodology -- were the techniques used to identify, gather, and analyze the data appropriate to addressing the research problem? Was the sample size appropriate? Were the results effectively interpreted and reported?
• Objectivity -- is the author's perspective even-handed or prejudicial? Is contrary data considered or is certain pertinent information ignored to prove the author's point?
• Persuasiveness -- which of the author's theses are most convincing or least convincing?
• Validity -- are the author's arguments and conclusions convincing? Does the work ultimately contribute in any significant way to an understanding of the subject?

II.  Development of the Literature Review

Four Basic Stages of Writing 1.  Problem formulation -- which topic or field is being examined and what are its component issues? 2.  Literature search -- finding materials relevant to the subject being explored. 3.  Data evaluation -- determining which literature makes a significant contribution to the understanding of the topic. 4.  Analysis and interpretation -- discussing the findings and conclusions of pertinent literature.

Consider the following issues before writing the literature review: Clarify If your assignment is not specific about what form your literature review should take, seek clarification from your professor by asking these questions: 1.  Roughly how many sources would be appropriate to include? 2.  What types of sources should I review (books, journal articles, websites; scholarly versus popular sources)? 3.  Should I summarize, synthesize, or critique sources by discussing a common theme or issue? 4.  Should I evaluate the sources in any way beyond evaluating how they relate to understanding the research problem? 5.  Should I provide subheadings and other background information, such as definitions and/or a history? Find Models Use the exercise of reviewing the literature to examine how authors in your discipline or area of interest have composed their literature review sections. Read them to get a sense of the types of themes you might want to look for in your own research or to identify ways to organize your final review. The bibliography or reference section of sources you've already read, such as required readings in the course syllabus, are also excellent entry points into your own research. Narrow the Topic The narrower your topic, the easier it will be to limit the number of sources you need to read in order to obtain a good survey of relevant resources. Your professor will probably not expect you to read everything that's available about the topic, but you'll make the act of reviewing easier if you first limit scope of the research problem. A good strategy is to begin by searching the USC Libraries Catalog for recent books about the topic and review the table of contents for chapters that focuses on specific issues. You can also review the indexes of books to find references to specific issues that can serve as the focus of your research. For example, a book surveying the history of the Israeli-Palestinian conflict may include a chapter on the role Egypt has played in mediating the conflict, or look in the index for the pages where Egypt is mentioned in the text. Consider Whether Your Sources are Current Some disciplines require that you use information that is as current as possible. This is particularly true in disciplines in medicine and the sciences where research conducted becomes obsolete very quickly as new discoveries are made. However, when writing a review in the social sciences, a survey of the history of the literature may be required. In other words, a complete understanding the research problem requires you to deliberately examine how knowledge and perspectives have changed over time. Sort through other current bibliographies or literature reviews in the field to get a sense of what your discipline expects. You can also use this method to explore what is considered by scholars to be a "hot topic" and what is not.

III.  Ways to Organize Your Literature Review

Chronology of Events If your review follows the chronological method, you could write about the materials according to when they were published. This approach should only be followed if a clear path of research building on previous research can be identified and that these trends follow a clear chronological order of development. For example, a literature review that focuses on continuing research about the emergence of German economic power after the fall of the Soviet Union. By Publication Order your sources by publication chronology, then, only if the order demonstrates a more important trend. For instance, you could order a review of literature on environmental studies of brown fields if the progression revealed, for example, a change in the soil collection practices of the researchers who wrote and/or conducted the studies. Thematic [“conceptual categories”] A thematic literature review is the most common approach to summarizing prior research in the social and behavioral sciences. Thematic reviews are organized around a topic or issue, rather than the progression of time, although the progression of time may still be incorporated into a thematic review. For example, a review of the Internet’s impact on American presidential politics could focus on the development of online political satire. While the study focuses on one topic, the Internet’s impact on American presidential politics, it would still be organized chronologically reflecting technological developments in media. The difference in this example between a "chronological" and a "thematic" approach is what is emphasized the most: themes related to the role of the Internet in presidential politics. Note that more authentic thematic reviews tend to break away from chronological order. A review organized in this manner would shift between time periods within each section according to the point being made. Methodological A methodological approach focuses on the methods utilized by the researcher. For the Internet in American presidential politics project, one methodological approach would be to look at cultural differences between the portrayal of American presidents on American, British, and French websites. Or the review might focus on the fundraising impact of the Internet on a particular political party. A methodological scope will influence either the types of documents in the review or the way in which these documents are discussed.

Other Sections of Your Literature Review Once you've decided on the organizational method for your literature review, the sections you need to include in the paper should be easy to figure out because they arise from your organizational strategy. In other words, a chronological review would have subsections for each vital time period; a thematic review would have subtopics based upon factors that relate to the theme or issue. However, sometimes you may need to add additional sections that are necessary for your study, but do not fit in the organizational strategy of the body. What other sections you include in the body is up to you. However, only include what is necessary for the reader to locate your study within the larger scholarship about the research problem.

Here are examples of other sections, usually in the form of a single paragraph, you may need to include depending on the type of review you write:

• Current Situation : Information necessary to understand the current topic or focus of the literature review.
• Sources Used : Describes the methods and resources [e.g., databases] you used to identify the literature you reviewed.
• History : The chronological progression of the field, the research literature, or an idea that is necessary to understand the literature review, if the body of the literature review is not already a chronology.
• Selection Methods : Criteria you used to select (and perhaps exclude) sources in your literature review. For instance, you might explain that your review includes only peer-reviewed [i.e., scholarly] sources.
• Standards : Description of the way in which you present your information.
• Questions for Further Research : What questions about the field has the review sparked? How will you further your research as a result of the review?

IV.  Writing Your Literature Review

Once you've settled on how to organize your literature review, you're ready to write each section. When writing your review, keep in mind these issues.

Use Evidence A literature review section is, in this sense, just like any other academic research paper. Your interpretation of the available sources must be backed up with evidence [citations] that demonstrates that what you are saying is valid. Be Selective Select only the most important points in each source to highlight in the review. The type of information you choose to mention should relate directly to the research problem, whether it is thematic, methodological, or chronological. Related items that provide additional information, but that are not key to understanding the research problem, can be included in a list of further readings . Use Quotes Sparingly Some short quotes are appropriate if you want to emphasize a point, or if what an author stated cannot be easily paraphrased. Sometimes you may need to quote certain terminology that was coined by the author, is not common knowledge, or taken directly from the study. Do not use extensive quotes as a substitute for using your own words in reviewing the literature. Summarize and Synthesize Remember to summarize and synthesize your sources within each thematic paragraph as well as throughout the review. Recapitulate important features of a research study, but then synthesize it by rephrasing the study's significance and relating it to your own work and the work of others. Keep Your Own Voice While the literature review presents others' ideas, your voice [the writer's] should remain front and center. For example, weave references to other sources into what you are writing but maintain your own voice by starting and ending the paragraph with your own ideas and wording. Use Caution When Paraphrasing When paraphrasing a source that is not your own, be sure to represent the author's information or opinions accurately and in your own words. Even when paraphrasing an author’s work, you still must provide a citation to that work.

V.  Common Mistakes to Avoid

These are the most common mistakes made in reviewing social science research literature.

• Sources in your literature review do not clearly relate to the research problem;
• You do not take sufficient time to define and identify the most relevant sources to use in the literature review related to the research problem;
• Relies exclusively on secondary analytical sources rather than including relevant primary research studies or data;
• Uncritically accepts another researcher's findings and interpretations as valid, rather than examining critically all aspects of the research design and analysis;
• Does not describe the search procedures that were used in identifying the literature to review;
• Reports isolated statistical results rather than synthesizing them in chi-squared or meta-analytic methods; and,
• Only includes research that validates assumptions and does not consider contrary findings and alternative interpretations found in the literature.

Cook, Kathleen E. and Elise Murowchick. “Do Literature Review Skills Transfer from One Course to Another?” Psychology Learning and Teaching 13 (March 2014): 3-11; Fink, Arlene. Conducting Research Literature Reviews: From the Internet to Paper . 2nd ed. Thousand Oaks, CA: Sage, 2005; Hart, Chris. Doing a Literature Review: Releasing the Social Science Research Imagination . Thousand Oaks, CA: Sage Publications, 1998; Jesson, Jill. Doing Your Literature Review: Traditional and Systematic Techniques . London: SAGE, 2011; Literature Review Handout. Online Writing Center. Liberty University; Literature Reviews. The Writing Center. University of North Carolina; Onwuegbuzie, Anthony J. and Rebecca Frels. Seven Steps to a Comprehensive Literature Review: A Multimodal and Cultural Approach . Los Angeles, CA: SAGE, 2016; Ridley, Diana. The Literature Review: A Step-by-Step Guide for Students . 2nd ed. Los Angeles, CA: SAGE, 2012; Randolph, Justus J. “A Guide to Writing the Dissertation Literature Review." Practical Assessment, Research, and Evaluation. vol. 14, June 2009; Sutton, Anthea. Systematic Approaches to a Successful Literature Review . Los Angeles, CA: Sage Publications, 2016; Taylor, Dena. The Literature Review: A Few Tips On Conducting It. University College Writing Centre. University of Toronto; Writing a Literature Review. Academic Skills Centre. University of Canberra.

Writing Tip

Break Out of Your Disciplinary Box!

Thinking interdisciplinarily about a research problem can be a rewarding exercise in applying new ideas, theories, or concepts to an old problem. For example, what might cultural anthropologists say about the continuing conflict in the Middle East? In what ways might geographers view the need for better distribution of social service agencies in large cities than how social workers might study the issue? You don’t want to substitute a thorough review of core research literature in your discipline for studies conducted in other fields of study. However, particularly in the social sciences, thinking about research problems from multiple vectors is a key strategy for finding new solutions to a problem or gaining a new perspective. Consult with a librarian about identifying research databases in other disciplines; almost every field of study has at least one comprehensive database devoted to indexing its research literature.

Frodeman, Robert. The Oxford Handbook of Interdisciplinarity . New York: Oxford University Press, 2010.

Another Writing Tip

Don't Just Review for Content!

While conducting a review of the literature, maximize the time you devote to writing this part of your paper by thinking broadly about what you should be looking for and evaluating. Review not just what scholars are saying, but how are they saying it. Some questions to ask:

• How are they organizing their ideas?
• What methods have they used to study the problem?
• What theories have been used to explain, predict, or understand their research problem?
• What sources have they cited to support their conclusions?
• How have they used non-textual elements [e.g., charts, graphs, figures, etc.] to illustrate key points?

When you begin to write your literature review section, you'll be glad you dug deeper into how the research was designed and constructed because it establishes a means for developing more substantial analysis and interpretation of the research problem.

Hart, Chris. Doing a Literature Review: Releasing the Social Science Research Imagination . Thousand Oaks, CA: Sage Publications, 1 998.

Yet Another Writing Tip

When Do I Know I Can Stop Looking and Move On?

Here are several strategies you can utilize to assess whether you've thoroughly reviewed the literature:

• Look for repeating patterns in the research findings . If the same thing is being said, just by different people, then this likely demonstrates that the research problem has hit a conceptual dead end. At this point consider: Does your study extend current research?  Does it forge a new path? Or, does is merely add more of the same thing being said?
• Look at sources the authors cite to in their work . If you begin to see the same researchers cited again and again, then this is often an indication that no new ideas have been generated to address the research problem.
• Search Google Scholar to identify who has subsequently cited leading scholars already identified in your literature review [see next sub-tab]. This is called citation tracking and there are a number of sources that can help you identify who has cited whom, particularly scholars from outside of your discipline. Here again, if the same authors are being cited again and again, this may indicate no new literature has been written on the topic.

Onwuegbuzie, Anthony J. and Rebecca Frels. Seven Steps to a Comprehensive Literature Review: A Multimodal and Cultural Approach . Los Angeles, CA: Sage, 2016; Sutton, Anthea. Systematic Approaches to a Successful Literature Review . Los Angeles, CA: Sage Publications, 2016.

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Literature Review Challenge

Welcome to the literature review challenge (graduate student focus).

• Day 1: Search Strategically
• Day 2: Stay on Top of Literature in Your Field
• Day 3: Organize What You Find
• Day 4: Manage Your Citations
• Day 5: Avoid Link Rot in Your References

This Challenge includes tools and strategies to help researchers take their literature searching to the next level. The content is geared toward graduate students and early career faculty, but has elements that anyone may find of interest/use to their work. The activities are presented as daily "challenges" that participants might accomplish over the course of one week. However, each activity stands alone and can be completed separately from the others and at a time that is convenient for you.  Each day, for five days, you will engage with brief tasks designed to help you make the most of your literature searching, including how to strategically search for literature in the library, Google Scholar, and beyond, how to stay on top of literature in your field, approaches to organizing and thematizing your literature, and how to avoid link rot in your reference list. The University of Maine recognizes that it is located on Marsh Island in the homeland of the Penobscot Nation, where issues of water and territorial rights, and encroachment upon sacred sites, are ongoing. Penobscot homeland is connected to the other Wabanaki Tribal Nations — the Passamaquoddy, Maliseet, and Micmac — through kinship, alliances and diplomacy. The university also recognizes that the Penobscot Nation and the other Wabanaki Tribal Nations are distinct, sovereign, legal and political entities with their own powers of self-governance and self-determination.

• Next: Day 1: Search Strategically >>
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English 101 Research Guide

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Try Day 1 of the Literature Review Challenge

Try day 2 of the literature review challenge, try day 3 of the literature review challenge, try day 4 of the literature review challenge, try day 5 of the literature review challenge.

Welcome to the Literature Review Challenge for Undergrads!

About the Literature Review Challenge: "includes tools and strategies to help you take your literature searching to the next level. The activities are presented as daily "challenges" that participants might accomplish over the course of one week. However, each activity stands alone and can be completed separately from the others and at a time that is convenient." Adapted from the Literature Review Challenge at the University of Maine).

Why Day 1? -- Day 1 focuses on the need to "Define (ore Refine) Your Research Topic/Question" -- the resources on this day include a video about how to do research on a topic and another about developing a research question.Also, here is a link to a template for refining from a general topic to a research question. The exercise is quick and informative!

From North Carolina University Libraries

From Laurier University Library

Why Day 2? -- The Day 2 Challenge focuses on how to "Search Strategically" -- the resources and information on this day include a video with tips for effective online search, written instructions for how to build quality searches, and several challenges.

• Academic Search Complete
• ProQuest Complete
• Open the database.
• Go to the Help menu if it has one (usually at the top right of the screen).
• Identify that database's advanced search techniques. For SearchBox users, run a search and then click on the three dots at the top right of the page and go to the "Tips for using SearchBox" link.
• Then, use one (or more!) of the advanced search strategies in the database you chose to find literature relevant to your research question(s).

From Sarah Clark at the University of Manitoba

We have a handout on Research tips and Boolean searching for you. Once you have found literature relevant to your research question, ask yourself whether your research question needs adjusting.

Why Day 3? -- Scholarly material can be accessed beyond the use of library databases.

Google Scholar is a search engine that links to materials like journal articles, e/books, government information, dissertations, and theses. Results can come from publishers, institutional repositories, government agencies, and other reputable sources.

If you have searched Google and landed on a scholarly article, you have used Google Scholar (scholar.google.com)!

You can customize Google Scholar to provide full-text links to journal articles available through Mullen Library's subscriptions. This approach will save you time by getting the full text more quickly and it will help you avoid paywalls--when you are asked to pay for articles. Never pay!

Note: not all results in Google Scholar are scholarly so if you have doubts, talk with your subject librarian for help identifying what you've found.

Your Challenge: Set up Library Links in Google Scholar to Get to Full Text Faster!

1. Go to Google Scholar

4. Click "Library links," and then enter "Catholic University of America" in the search bar

5. Check the boxes next to "Catholic University - ProQuest FullText" and "Catholic University of America - ViewIt@CatholicU" of America.

6. Click "Save"

7. Now, when you search Google Scholar, you will see a "Full-Text @ Your Library" or "Full View" or "ViewIt@CatholicU" link next to any subscription resources that we have access to through the library!

Why Day 4? -- You can now organize and synthesize what you have found. Up to now, you have focusing on refining the topic, strategic literature searching, and accessing the literature for your paper. Now, you must organize what you have found in order to make sense of your topic.

Your Challenge: Create a Literature Review Matrix Adapting One of the Following Templates

As you gather the information for your research question, your reading/note-taking process begins. You will need to make sense of your readings as you organize and and learn from it.  These spreadsheets are excellent tools for organizing your ideas. Copy one of these and and modify it to your needs. You can even create your own template to get started.

The purpose of these spreadsheets is to assist you in tracking your research, what you are reading, and your thoughts on each source you found.  By this tracking method, you can easily identify recurring themes, trends, or patterns, disagreements, and underdeveloped ideas or arguments.

• Literature review matrix template that can be copied and modified, plus an example of the matrix template in action .
• Example of a literature review matrix (a synthesis matrix) that focuses on main ideas while comparing and contrasting concepts from various sources. From Florida International University.
• Literature review matrix that can be copied and modified . This matrix has cross-references for examining examples of other works with similar ideas. There is even a column for direct quotations which can help you avoid unintentional plagiarism.  From Raul Pacheco-Vega who writes more of his technique here .   

Why Day 5? -- Manage Your Citations. Citation managers can save you time and make citing and writing less stressful.

The benefits of a citation manager include:

• Collect and organize resources for papers;
• Keep your ideas connected to the resources you collect by annotating each resource;
• Create lists of citations in your citation style of choice;
• And, citing while you write. This feature means that you can insert citations into the body of your text and a reference list will be generated at the end of your paper.

Citation managers work with subject databases, search engines, and Google Scholar.   Watch this video where they use Zotero as an example to show you how it's done.

Boston University

Your Challenge: Set Up an Account in a Citation Manager

1. Set up an account in a citation manager. There are numerous options out there (see this comparison chart ). Catholic University Libraries has subscriptions to RefWorks and EndNote with Zotero being free.

2. Begin creating/organizing folders and pulling in literature. Once you have created an count in RefWorks, EndNote or Zotero, you are ready to search and import records from databases into your account. Consider the research projects you are working on and create a folder for each one. You can create subfolders that cover  different sections of an essay you're writing (e.g., introduction, literature review, methodology, discussion) .

3. Create a quick bibliography from your citation manager, in the citation style of your choice.

• Visit a database of interest (e.g., an EBSCO or ProQuest database). Or, for this practice run, try Academic Search Complete .
• Run your search and click on the folder icon (with a + sign) next to each citation. Once you have selected enough sources, select the "Go to Folder View" icon to the right edge of the screen. A list of your saved citations will appear.
• At the right, select the "Export" icon. This page gives you the citation manager options available to you. Select "Direct Export to Refworks" and follow the instructions.
• Once you are in RefWorks and have imported the citations into a folder, you can create a bibliography by selecting the "Create bibliography" button at the top of the RefWorks menu.
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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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• Published: 13 April 2024

Challenging pitfalls in frozen section pathology: a case of mandible ghost cell odontogenic carcinoma and the literature review

• Sha-Sha Hu 1   na1 ,
• Jian Yang 2   na1 ,
• Hai-Fei Zhang 1   na1 ,
• Jie Chen 1 ,
• Xin-Nian Li 1 ,
• Fu-Jin Liu 1 &
• Bo Wang 1  

BMC Oral Health volume  24 , Article number:  450 ( 2024 ) Cite this article

232 Accesses

Metrics details

Ghost cell odontogenic carcinoma (GCOC) is a rare malignancy characterized by the presence of ghost cells, preferably in the maxilla. Only slightly more than 50 case reports of GCOC have been documented to date. Due to the rarity of this tumor and its nonspecific clinical criteria, there is a heightened risk of misdiagnosis in clinical examination, imaging findings, and pathology interpretation.

Case presentation

A 50-year-old male patient presented to the hospital due to experiencing pain in his lower front teeth while eating for the past 2 months. Upon examination, a red, hard, painless mass was found in his left lower jaw, measuring approximately 4.0 cm × 3.5 cm. Based on the malignant histological morphology of the tumor and the abundant red-stained keratinized material, the preoperative frozen section pathology misdiagnosed it as squamous cell carcinoma (SCC). The surgical resection specimen pathology via paraffin section revealed that the tumor was characterized by round-like epithelial islands within the fibrous interstitium, accompanied by a large number of ghost cells and some dysplastic dentin with infiltrative growth. The malignant components displayed marked heterogeneity and mitotic activity. Additionally, a calcified cystic tumor component of odontogenic origin was observed. Hemorrhage, necrosis, and calcifications were present, with a foreign body reaction around ghost cells. Immunoreactivity for β-catenin showed strong nuclear positivity in tumor cells, while immunostaining was completely negative for p53. The Ki67 proliferation index was approximately 30–40%. The tumor cells exhibited diffuse CK5/6, p63, and p40 immunoreactivity, with varying immunopositivity for EMA. Furthermore, no BRAF V600E mutation was identified by ARMS-PCR. The final pathology confirmed that the tumor was a mandible GCOC.

We have reported and summarized for the first time the specific manifestations of GCOC in frozen section pathology and possible pitfalls in misdiagnosis. We also reviewed and summarized the etiology, pathological features, molecular characteristics, differential diagnosis, imaging features, and current main treatment options for GCOC. Due to its rarity, the diagnosis and treatment of this disease still face certain challenges. A correct understanding of the pathological morphology of GCOC, distinguishing the ghost cells and the secondary stromal reaction around them, is crucial for reducing misdiagnosis rates.

Peer Review reports

Ghost cell odontogenic carcinoma (GCOC) is a very rare malignancy originating from odontogenic epithelium, typically affecting patients aged from 40 to 70 years, with a higher occurrence in males [ 1 ]. GCOC, characterized by poorly demarcated lesion radiologically, ameloblastoma-like epithelium, prominent ghost cells and cytological evidence of malignancy, is about the rarest of the ghost cell lesions, accounting for approximately 0.23% of all odontogenic tumors and less than 3% of all ghost cell lesions [ 1 , 2 , 3 ]. In 2005, it was included in the World Health Organization (WHO) classification of malignant odontogenic tumors [ 4 ]. Since Ikemura et al. firstly recorded a case in detail in 1985 [ 5 ], only slightly more than 50 case reports of GCOC have been documented to date [ 6 ]. About 55% cases of GCOC are thought to originate from de novo, others arise from pre-existing calcifying odontogenic cyst (COC) or dentinogenic ghost cell tumor (DGCT) [ 7 ]. These three tumors manifest similar clinical and radiological features, making the diagnosis challenging. Given the rarity and nonspecific clinical criteria of the tumor, clinical examination, imaging findings and pathology are also prone to misdiagnosis.

Here, we report a rare case of mandible ghost cell odontogenic carcinoma that was misdiagnosed as squamous cell carcinoma on intraoperative incisional biopsy frozen section pathology.

In April 2021, a 50-year-old male patient presented to the hospital with complaints of painful feeling while eating in his lower anterior teeth for 2 months. His examination revealed a red, hard, painless swelling of approximately 4.0 cm × 3.5 cm in size, located in the left mandible. The patient exhibited poor overall oral hygiene, and his teeth had grade II mobility with caries. However, no enlargement of the lymph nodes in the lower jaw or the oral cavity was detected. The rest of the dental specialty examination revealed no abnormalities. This patient had a long-term betel nut chewing habit and no other genetic or chronic diseases. The attending physician at the time diagnosed a mandibular cyst. Maxillofacial computerized tomogram (CT) suggested a soft tissue mass with bone destruction in the median alveolar region of the mandible (Fig.  1 A-C), which was considered a tumorigenic lesion. Postoperative CT showed no residual mass (Fig.  1 D).

Preoperative CT and intraoperative pathologic frozen examination. ( A , B ) Computed tomography (CT) showed a soft tissue mass with bone destruction in the mandible (red arrows). ( C ) 3D reconstruction of CT scan showed significant loss in the median alveolar region of the mandible with no signs of fracture ( D ) Postoperative images. ( E , F ) In frozen section pathology, resected tumor showed variable patterns of solid nests or cords. ( G , H ) The tumor cells with pleomorphism, increased N/C ratio, nuclear hyperchromatism, and mitotic activity. ( I ) There were large numbers of homogeneous red-stained unstructured or hyaline stroma similar to keratinization. ( J ) Foreign body granuloma reaction could be seen in the surrounding interstitium (red arrows).

The initial frozen biopsy section examination displayed the lesion dominated by large numbers of homogeneous red-stained unstructured or hyaline stroma, resembling keratinization (Fig. 1I). Scattered among these stromal elements were tumor cells exhibiting pleomorphism, increased nuclear/cytoplasmic (N/C) ratio, nuclear hyperchromatism, and mitotic activity (Fig.  1 G, H). The tumor cells formed solid nests or cords (Fig.  1 E, F), indicative of a malignant epithelial tumor. Additionally, a foreign body granuloma reaction was observed in the surrounding interstitium (Fig.  1 J). In conclusion, the final frozen section pathology diagnosis was SCC.

Upon admission, the patient was initially suspected to have a mandibular cyst. However, intraoperative freezing indicated the presence of squamous cell carcinoma in the mandibular mass. Considering the significant shift in the tumor’s nature, the medical team made the decision to modify the initially planned surgical approach and broaden the extent of the procedure after consulting with the patient’s family. The revised surgical approach consisted of several steps. First, a partial resection of the mandible and the mass was performed. This was followed by bilateral cervical lymphadenectomy to remove any potentially affected lymph nodes. The next step involved repairing the defect in the fundus. To reconstruct the area, an excision was performed, and a vascularized free peroneal myocutaneous flap was used as a graft. A small arterial anastomosis was then carried out to ensure proper blood supply to the graft. Solid internal fixation was applied to stabilize the mandible. Additionally, the fibula, along with its blood vessels, was extracted for further reconstruction purposes. Finally, a tracheotomy was performed. These modifications to the surgical procedure were made in order to effectively address the presence of squamous cell carcinoma and ensure the best possible outcome for the patient.

The treatment involved excision of part of the mandibular bone and mass. Grossly, surgical specimen measured 6.5 × 5.5 × 4.0 cm, with 5 teeth attached to it. The area of alveolar mucosa showed an ulcerated mass (Fig.  2 A). The cut surface of the tumor was 2.2 × 1.3 × 2.1 cm in diameter, presented as a gray to taupe solid mass with areas of hemorrhage and cystic change and invaded the mandible (Fig.  2 B).

Postoperative pathology analysis. ( A , B ) Gross excision specimen and tumor incision surface (red circles). ( C ) Microscopically, paraffin section showed the tumor boundary was not clear. ( D , E ) Hematoxylin and eosin stain (HE) showed that tumor cells are arranged in solid nests and anastomosing cords. ( F , G ) The tumor was composed of small cells with hyperchromatic nuclei or large cells with vacuolated nuclei, with marked heterogeneity and mitotic activity (red arrows). ( H , I ) A calcified cystic tumor component of odontogenic origin could be seen and the malignant epithelial component were separated from or mixed with the benign lesion. (J-O) Ghost cells ( J ), dentinoid material ( K ), hemorrhage ( L ), necrosis ( M ) and calcifications ( N ) could be found, with foreign body reaction around ghost cell ( O ).

The histological examination revealed the tumor was characterized by round-like epithelial islands within the fibrous interstitium, accompanied by a large numbers of ghost cells and a little dysplastic dentin with infiltrative growth (Fig.  2 C). Histopathological sections revealed solid nests and anastomosing cords (Fig.  2 D, E). The malignant components consisted of round-like epithelial islands, with some cells appearing as small round cells with deeply stained nuclei, while others exhibited large cells with vacuolated nuclei, displaying marked heterogeneity and mitotic activity (Fig.  2 F, G). A calcified cystic tumor component of odontogenic origin could be seen. The malignant epithelial component was observed either separated from or mixed with the benign lesion (Fig.  2 H, I). The ghost cells were round or ovoid, with red-stained cytoplasm, disappearing uncolored nuclei, and empty bright areas at the nuclei (Fig.  2 J). Dentinoid material and hemorrhage, necrosis and calcifications could be found, with foreign body reaction around ghost cell (Fig.  2 K-O).

An extensive immunohistochemical panel was performed. Immunoreactivity for β-catenin showed strong nuclear positivity in tumor cells. Immunostaining was completely negative for p53. The Ki67 proliferation index was around 30–40%. The tumor cells showed diffuse CK5/6, p63 and p40 immunoreactivity. There was varying immunopositivity for EMA. Immunostaining was negative for Vimentin (Vim), S-100, Synaptophysin (Syn) and Chromogranin A (CgA) (Fig.  3 ). No BRAF V600E mutation was identified by amplification refractory mutation system polymerase chain reaction (ARMS-PCR).

Immunohistochemistry showed expression of CK5/6, p63, Vim, β-catenin, p53 and Ki67.

The final pathology via paraffin section showed that the tumor was a mandible GCOC. We reviewed and summarized the possible pitfalls of frozen section pathology diagnosis of GCOC. A large numbers of ghost cells could be seen between the tumor cells of GCOC, and there was no intercellular bridge between cells (Fig.  4 A, B). The homogeneous red-stained unstructured materials were very characteristic ghost cells (Fig.  4 C), and a little dentin material could be found by careful observation (Fig.  4 D). In addition, calcifications (Fig.  4 E) and foreign body granuloma reaction (Fig.  4 F) around ghost cells were also suggestive for the diagnosis of GCOC.

The possible pitfalls of frozen section pathology diagnosis of GCOC. ( A ) A large number of ghost cells could be seen, ( B ) There was no intercellular bridge between cells. ( C ) The homogeneous red-stained unstructured materials were very characteristic ghost cells. ( D - E ) A little dentin material ( D ), calcifications ( E ) and foreign body granuloma reaction around ghost cells ( F ) could be found by careful observation.

The patient finally recovered and was discharged in May 2021. Under the strict regular physical and imaging examinations, the patient has no signs of tumor recurrence within two years of follow-up. Patients gave their affirmation and adequate cooperation to the process and results of treatment.

This report described a rare case of mandibular GCOC that was misdiagnosed as SCC by frozen section pathology during the perioperative period. Previous examinations and imaging findings were inconclusive. Intraoperative frozen section pathology was diagnosed as SCC on the basis of cytological evidence of malignancy and a large number of keratin-like red-stained unstructured structures. Until the final paraffin section pathology corrects the diagnosis as GCOC.

GCOC is an extremely rare destructive and aggressive malignant odontogenic tumor. Due to its different histopathological features, various terms have been used to define the disease, including calcifying ghost cell odontogenic carcinoma, aggressive epithelial ghost cell odontogenic tumors, malignant epithelial odontogenic ghost cell tumor, carcinoma arising in a calcifying odontogenic cyst, malignant calcifying ghost cell odontogenic tumors and malignant calcifying odontogenic cyst [ 8 , 9 ]. So far, only more than 50 cases have been reported in the English literature, with about 40% of the cases occurring in Asian patients [ 6 ]. GCOC has a male predominance, occurring in individuals from 3 to 92 years [ 10 ]. In one study, it was suggested that GCOC was twice as common in the maxilla as in the mandible [ 8 ]. Another statistical survey showed that GCOC occurred more frequently in the maxilla than in the mandible, with 31 out of 51 patients occurring in the maxilla [ 11 ]. These tumors have been intraosseous and mandibular lesions are usually in the molar area [ 12 ]. Given the rarity of the disease and the non-specificity of its clinical features, little is known about GCOC. Therefore, the progression of GCOC is unpredictable. Meanwhile, it may vary from slow progression to rapid destructive behavior, with recurrence and occasional distant metastasis to axillary skin, brain, and lung [ 13 ].

The diagnosis of GCOC is challenging and difficult for the first attending physician, and even pathologists face a high risk of misdiagnosis due to its rarity, complexity and inexperience. In imaging, GCOC does not have specific imaging features, so pathological testing remains the primary and most important way to identify. For the differential diagnosis of GCOC, the main differentiators are benign odontogenic tumors, dentinogenic ghost cell tumor (DGCT), calcifying odontogenic cyst/ calcifying cystic odontogenic tumor (COC/ CCOT), odontomas, cholesterol granuloma of the maxillary sinus (CGMS), amelobalstoma and also in craniopharyngiomas and pilomatricomas [ 14 ]. In addition, if ghost cells are not present in the frozen section, the possibility of ameloblastic carcinoma should also be considered. Generally benign lesions tend to have well-defined margins, while malignant tumors are mostly destructive and ill-defined [ 15 ]. WHO describes the DGCT parenchyma as presenting an ameloblastomatous proliferation with occasional significant component of hyperchromatic basaloid cells [ 16 ]. Exuberant areas with spindle-shaped cells and sieve-like structures can also be observed in some cases [ 17 ]. However, one must be alert to the fact that while ameloblastomas and sieve patterns can be found in other odontogenic lesions such as ameloblastomas and adenoid ameloblastomas, these lesions may also have scattered ghost cells [ 18 ]. CGMS is characterized by a large number of cholesterol clefts surrounded by multinucleated giant cells, histiocytes, plasma cells, lymphocytes, and hemosiderin deposits [ 19 , 20 ]. CCOT is characterized by proliferation of odontogenic epithelium and scattered nests of ghost cells and calcifications that may form the lining of a cyst, or present as a solid mass [ 21 ]. COCs are recognized by cystic proliferation with a fibrous capsule. The thickness of lining epithelium may vary between 4 and 10 layers. Areas of calcification and ghost cells can be observed [ 22 ].

In our case, the frozen section pathology was misdiagnosed as SCC. If the pathologist has insufficient diagnostic experience and encounters challenges like easy deformation and poor staining of frozen pathological sections, there is a risk of mistaking ghost cells for keratinized cells without careful identification. Therefore, distinguishing GCOC from well-differentiated SCC is crucial. Reviewing our cases and the pathological features of the two tumors, we summarize the following points of differentiation: (1) GCOC is sometimes secondary to COC or DGCT with mixed or segregated benign epithelial components and malignant epithelial components, which can be seen in our paraffin section pathology; whereas SCC can be seen with varying degrees of squamous intraepithelial lesions. (2) GCOC shows ameloblastoma-like epithelium with fenestrated peripheral cells in the cell nest, a typical structure not seen in our case, while basal cell-like SCC shows fenestrated peripheral cells in the cell nest. (3) In GCOC, a large numbers of ghost cells were seen around the nest and anastomotic strips, i.e., round or ovoid cells with red-stained cytoplasm and absent, uncolored nuclei, and empty bright areas in the nuclei; a large number of keratinized cells were seen in the center of the nest of well-differentiated SCC cells and formed keratinized beads. GCOC keratinization differs from normal keratinization in several aspects. Firstly, GCOCs are larger than keratotic squames. Secondly, they are often vacuolated, containing small fluid-filled spaces. Lastly, GCOCs exhibit prominent remnants of the nuclear membrane [ 23 ]. Failure to correctly identify ghost cells is also a major cause of misdiagnosis in our frozen section pathology. (4) GCOC consists of small cells with deeply stained nuclei or large cells with vacuolated nuclei and basophilic cells; well-differentiated SCC cells are large with eosinophilic or biphilic cytoplasm and intercellular bridges are seen. (5) In addition, consistent with what has been reported in other literature, the presence of dentin as well as calcification and foreign body granulomatous reaction in the ghost cell area can help to identify GCOC [ 10 , 23 ], and after careful observation, these lesions are seen in our frozen pathological sections.

The etiology of GCOC is controversial, and current pathogenesis theories include: GCOC occurs secondary to calcifying cystic odontogenic tumors [ 24 ]; GCOC is caused by dentinogenic ghost cell tumors [ 20 ]; de novo, with no previous associated lesions [ 25 , 26 ]; genetic mutations are a possible direction [ 7 ]. Rappaport et al. reported that mutation of the β-catenin gene was noted at codon 33 in GCOC [ 27 ]. Three other genomic alterations in GCOC: CTNNB1 S33C, CREBBP K1741* and MLL2 S1997fs*44 [ 27 ]. An extensive integrative genomic and transcriptomic analysis of GCOC studied by Bose et al. reported numerous genomic alterations [ 28 ]. P53 overexpression and UBR5 mutations were also reported in the GCOC [ 29 ], while in another study genetic abnormalities were found in NOTCH1 and PTEN due to deletion [ 18 ]. However, one must be alert to the fact that while ameloblastomatous and cribriform patterns can be found in other odontogenic lesions such as ameloblastoma and adenoid ameloblastoma, these lesions may also have scattered ghost cells [ 16 , 30 ]. In our case, immunohistochemical results showed a positive β-catenin diffuse nucleus with complete deletion of p53 expression and showed a high proliferation index of ki-67. We used ARMS-PCR to detect BRAF V600E , but the test result was negative.

Due to the extreme scarcity of cases, there is still considerable disagreement among different authors regarding the prevalent location of GCOC, its metastatic characteristics, and treatment options. Currently, more researchers believe that the main site of predilection for GCOC is the maxilla, and the most common clinical symptom is a painful swelling of the upper jaw accompanied by local sensory abnormalities [ 31 ]. The most typical radiological features of GCOC show a mixed pattern of radiolucent and radiopaque lesions with ill-defined borders, with or without root resorption and tooth displacement [ 31 , 32 ]. However, in this case, the boundaries of GCOC are well defined, and the rare morbidity and atypical imaging pattern are more likely to lead to an error in the initial clinical diagnosis, making the pathological diagnosis of GCOC extremely important. The current GCOC recommended treatment is extensive surgical excision of at least 5 mm of free margin with no residual outside the incision margin [ 33 ]. The most frequent procedures include marginal, segmental or partial resection or total maxillectomy, depending on the size of the lesions [ 32 , 34 ]. Post-surgical treatment options include adjuvant chemotherapy, adjuvant immunotherapy, and adjuvant radiotherapy, but the effectiveness of treatment remains controversial to this day. Qin Y, et al. reported significant symptom improvement in patient who underwent extensive surgery followed by two cycles of chemotherapy and radiotherapy, along with four rounds of weekly chemotherapy [ 20 ]. However, some researchers have pointed out that the benefit of adjuvant radiotherapy for GCOC patients is difficult to determine [ 24 , 26 ]. In 2015, Ahmed et al. reported the first case treated successfully with aggressive multimodal therapy in a 10 year old patient with regional lymph node metastasis that included surgery, adjuvant chemoradiation, and adjuvant immunotherapy [ 35 ]. Lu Y et al. reported that the 5-year survival rate of GCOC was about 73% [ 36 ]. In another related paper, the recurrence rate for recurrence, metastasis, and survival in GCOC was reported to be 63.4% [ 32 ]. Due to the limited number of cases and high recurrence rate, our knowledge of GCOC is limited, and prognosis is difficult to predict. Therefore, long-term follow-up and monitoring are necessary.

Conclusions

We report a highly unusual case of GCOC, initially misdiagnosed as SCC on frozen section pathology, and subsequently diagnosed as GCOC through a series of pathologic examinations. GCOC has been poorly studied due to its nonspecific clinical features and extremely low incidence, especially since frozen section pathology reports have never been reported. At the same time, we summarized the clinical features, imaging characteristics and treatment options of GCOC. Our report presents, for the first time, the pathological presentation of GCOC through frozen section pathology, along with a thorough analysis of potential misdiagnosis pitfalls for more pathologists, in order to deepen their understanding of this disease and reduce the misdiagnosis rate of intraoperative freezing. This case provides valuable and informative data and insights, contributing to our understanding of this rare entity with limited reported cases.

Data availability

All data generated or analysed during this study are included in this published article.

Abbreviations

• Ghost cell odontogenic carcinoma

squamous cell carcinoma

calcifying cystic odontogenic tumor

calcifying odontogenic cyst

dentinogenic ghost cell tumor

computerized tomogram

amplification refractory mutation system polymerase chain reaction

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Acknowledgements

We thank the Pathology Committee of Hainan General Hospital for their assistance and helpful suggestions.

This work was supported by Hainan Provincial Natural Science Foundation of China (820QN387), Hainan Province Science and Technology Special Fund of China (ZDKJ2021040, ZDYF2021SHFZ247), Clinical Translational Innovation Cultivating Fund 550 Project of Hainan General Hospital (2021CXZH02), National Natural Science Fund Cultivating 530 Project of Hainan General Hospital (2021MSXM13) and Joint Program on Health Science & Technology Innovation of Hainan Province (WSJK2024QN013).

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Sha-Sha Hu, Jian Yang and Hai-Fei Zhang are co-first authors.

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Department of Pathology, Hainan General Hospital (Hainan Affiliated Hospital of Hainan Medical University), Haikou, 570311, China

Sha-Sha Hu, Hai-Fei Zhang, Jie Chen, Xin-Nian Li, Fu-Jin Liu & Bo Wang

Department of Wound Repair, The First Affiliated Hospital of Hainan Medical University, Hainan Medical University, Haikou, 570311, China

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SH and JY handled the case and drafted the manuscript. FZ and JC assisted in the collection of case information and literature and did all the documentation and article work. XL, FL and BW put great effort and made many constructive comments during the revision and writing of this article. SH and BW acquired funding, provided resources and supervised all the work. All authors contributed to the review and editing process. All authors approved the final work.

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Hu, SS., Yang, J., Zhang, HF. et al. Challenging pitfalls in frozen section pathology: a case of mandible ghost cell odontogenic carcinoma and the literature review. BMC Oral Health 24 , 450 (2024). https://doi.org/10.1186/s12903-024-04190-0

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Dementia care pathways in prisons – a comprehensive scoping review

• Samantha Treacy 1 ,
• Steven Martin 2 ,
• Nelum Samarutilake 3 ,
• Veronica Phillips 4 ,
• Ben R. Underwood 3 , 5 &
• Tine Van Bortel   ORCID: orcid.org/0000-0003-0467-6393 2 , 3  

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The number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system.

To examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways.

A scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation.

Sixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom ( n  = 34), followed by the United States ( n  = 15), and Australia ( n  = 12). One further paper was from India.

The literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector.

To our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

The number of older people (defined here as those over 50 Footnote 1 ) being held in prison in England and Wales has almost tripled over the last 20 years, and they now represent 17.1% of that population (Ministry of Justice, 2022a ). The growing number of older people has brought with it an increasing number of health and social care problems, reportedly affecting around 85% of older people in prison, with associated costs (Di Lorito, et al., 2018 ; Hayes et al., 2012 , 2013 ; Senior, et al., 2013 ). It has been estimated that 8.1% of those over the age of 50 in prison have mild cognitive impairment or dementia, which is much higher than estimates for this age group in the general population (Dunne et al., 2021 ; Forsyth et al., 2020 ). This pattern of poor health also increased the vulnerability of older people in prison during the pandemic (Kay, 2020 ).

Prison policy and legislation mandates that health and social care be ‘equivalent’ to that provided in the community (Care Act, 2014 ; Department of Health, 1999 ). Despite this, provisions are reportedly inconsistent, and the government has been described as ‘failing’ in its duty of care (Health and Social Care Committee, 2018 ; HM Inspectorate of Prisons & Care Quality Commission, 2018 ). This is likely exacerbated by the suspension and limiting of healthcare services during the pandemic, noted to have had a ‘profound’ impact on people’s health and wellbeing (HM Inspectorate of Prisons, 2021 ). This may be particularly so for people living in prison with dementia (PLiPWD), whereby the difficulties of delivering health and social care are compounded by inappropriate buildings, environments, and prison regimes (rules and regulations). In addition, PLiPWDs may experience an increase in social isolation, including separation from friends and family, all of which may make their time in prison more challenging (Moll, 2013 ; Peacock et al., 2019 ).

There is no current national strategy for older people in prison in England and Wales, including PLiPWD, although the British government recently agreed that there is a need for one (Justice Committee, 2020 ). A ‘Model for Operational Delivery’ for older people has been published by Her Majesty's Prison & Probation Service ( 2018 ) in England and Wales, though this is guidance only and the “properly resourced and coordinated strategy” previously called for has not been produced (Prisons & Probation Ombudsman, 2017 , p7; Brooke and Rybacka, 2020 ; HM Inspectorate of Prisons, 2019 ; Justice Committee, 2020 ). One way of attempting to standardise and improve the quality of treatment and care in the community has been through the use of care pathways (Centre for Policy on Ageing, 2014 ; Schrijvers et al., 2012 ). Care pathways have been defined as “a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period”, involving an articulation of goals and key aspects of evidence-based care, coordination and sequencing of activities and outcomes evaluation (Vanhaecht, et al., 2007 , p137).

The development of care pathways within the prison system lags behind that of the community, but the National Institute for Health and Care Excellence (NICE) has produced a pathway for prisoner health for England and Wales (National Institute for Health and Care Excellence, 2019 ), and there is a care pathway for older prisoners in Wales (Welsh Government & Ministry of Justice, 2011 ). There has also recently been an overall care pathway developed for people in prison with mild cognitive impairment and dementia, although this has not been implemented as yet, and it does not include any details regarding release and resettlement (Forsyth et al, 2020 ). It has been recommended that care pathways should be developed locally, as they are context-sensitive, should be viewed as processual and flexible, and the needs of the person, their experiences and characteristics need to be taken into account – such as age, gender and race (Centre for Policy on Ageing, 2014 ; Pinder, et al., 2005 ).

Here we review the current literature on people living in prison with dementia. There have been two recent systematic literature reviews conducted on PLiPWD, both of which only included primary research studies that were small in number (Brooke and Rybacka, 2020 ( n  = 10); Peacock et al., 2019 ( n  = 8)), and focused on prevalence, identification (screening and diagnosis), and the need for tailored programming and staff training. Peacock et al., ( 2019 ) identified dementia as a concern and suggested recommendations for improved screening and care practices. Brooke et al. ( 2020 ) noted that, whilst the prevalence of dementia in prison populations was largely unknown, there was a need for national policies and local strategies that support a multi-disciplinary approach to early detection, screening and diagnosis. Neither paper, however, reported on the much more extensive and rich grey literature in this area (Brooke and Rybacka, 2020 ), to help comprehensively identify the systemic and operational problems, barriers and potential solutions that would be useful to consider in developing local dementia care pathways. Therefore, the aim of this paper is to conduct a comprehensive systematic scoping review of the available published literature on the support and management of PLiPWD in prison and upon transitioning into the community, and to identify practice and recommendations that would be useful to consider in the development of a local prison dementia care pathway.

A scoping review methodology using Arksey and O’Malley’s ( 2005 ) five-stage framework was adopted for this review. Reporting was guided by the PRISMA extension for scoping reviews checklist and explanation (Tricco et al., 2018 ). The completed checklist for this review is available in Additional file 1 : Appendix 1.

Identification of relevant reports

The search strategy was formulated by the research team, and included an electronic database search and subsequent hand search. The electronic search involved searching twelve electronic databases: Applied Social Sciences Index and Abstract, Criminal Justice Abstracts, Embase, Medline (OVID), National Criminal Justice Reference Service, Open Grey, Psycinfo, Pubmed, Scopus, Social Services Abstracts, Sociological Abstracts, and Web of Science. The search combined condition-related terms (dementia OR Alzheimer*) AND context-related ones (prison OR jail OR gaol OR penitentia* OR penal OR correctional* OR incarcerat*), with no date or language restrictions, and covered the full range of publications up until April 2022. Additional file 2 : Appendix 2 has an example of the search strategy used.

Electronic searches were supplemented by comprehensive hand searching and reference mining. Searches were also undertaken using: search engines; websites related to prisons and/or dementia (for example, Prison Reform Trust); a database from a previous related literature review (Lee et al, 2019 ); recommendations from academic networking sites; contacting prominent authors in the field directly; government-related websites (for example Public Health England, now called Health Security Agency); recent inspection reports for all prisons in England and Wales from Her Majesty’s Inspectorate of Prisons and the Independent Monitoring Board.

Inclusion and exclusion criteria

Papers were considered suitable for inclusion in this review if they met the following criteria:

Setting: Papers should primarily be set in, or pertain to, prisons. Documents solely referring to community services, hospitals or medical facilities that are not part of the prison system were excluded.

People: Papers involving PLiPWD. Research focused only on older people in prison more generally was excluded, as was research which described the disorienting effects of imprisonment more generally, but which was not related to dementia.

Intervention: Some consideration of the treatment, care, support or management of PLiPWD; this can be health or social-care associated, as well as related to the prison overall, and to any individuals, groups or agencies who visit or work with individuals during their time in prison (including family, friends, charities, probation services). Papers which mostly describe prevalence studies, sentencing practices or profiles were excluded.

Study design: All designs were considered for inclusion. Editorials, book reviews, online blogs, press releases, announcements, summaries, newspaper and magazine articles, abstracts and letters were excluded.

The titles, abstracts and full-text of the papers identified by the searches were screened for inclusion in the review. The screening was undertaken by two independent researchers (ST and NS) for inter-rater reliability purposes (Rutter et al., 2010 ). Any differences of opinion on inclusion were resolved between the researchers (ST, NS and SM), and with the Principle Investigator (TVB).

Charting the data

An extraction template was developed for the review, guided by the PICO formula (Richardson et al., 1995 ) and informed by pathway stages and key areas highlighted in the older prisoner pathways toolkit for England and Wales (Department of Health, 2007 ), and the older prisoner pathway formulated for Wales (Welsh Government & Ministry of Justice, 2011 ). Using this extraction template, all of the data was extracted from the included papers by one member of the research team (ST), with a second researcher extracting data from a third of the papers as a check for consistency (SM). Any unresolved issues were related to the Principle Investigator (TVB) for resolution.

Collating, summarising and reporting results

The review was deliberately inclusive of a wide variety of types of papers, which meant that taking a meta-analytic approach to the data was not feasible. Therefore, a narrative approach to summarising and synthesising the findings and recommendations of the included papers was adopted (Popay et al, 2006 ).

Sixty-seven papers were included in this scoping review. The screening process phases conducted by the research team are shown in Fig.  1 .

PRISMA flow diagram

A brief overview of the key features of each of the papers is presented in Table 1 . All but one of the included papers were from high income countries, with the majority from the United Kingdom ( n  = 34), and then the United States ( n  = 15), Australia ( n  = 12), Canada ( n  = 4), Italy ( n  = 1) and India ( n  = 1). The papers were split into types, with twenty-two guidance and inspection documents, and twenty-seven discussion and intervention description papers. Of the eighteen research and review articles with a defined methodology included there were four literature reviews (one was systematic), nine qualitative studies, four mixed-methods studies (one which followed participants up), and one survey-based study.

Areas to consider in the support and management of PLiPWD during their time in prison and upon their release

The pathway through the prison is shown in Fig.  2 , and typically involves: (i) reception into prison; (ii) assessments, and allocation of the person within prison; (iii) time held in prison; (iv) transfers between prisons, and between prisons and other services such as time spent in hospital; and (v) release and preparations for resettlement in the community. There were also a number of (vi) cross-cutting themes which could potentially impact people with dementia living in prison at each stage across the prison pathway.

Dementia prison pathway considerations

(i) Reception

Upon entry into prison, prisoners are subject to an initial reception screening to identify and support immediate health and social care problems, and those in need of further assessment. An induction to prison rules and regulations also typically occurs at this step.

All papers reported that reception screening with appropriate screening tools was important in identifying cognitive difficulties and in establishing a baseline, but implementation seemed to vary (Peacock et al., 2019 ). One study in England and Wales found only 30% of prisons contacted routinely did this (Forsyth et al., 2020 ). Supporting policy and a service/person to refer to directly for further assessment were also highlighted as useful (Brooke & Jackson, 2019 ; Brooke et al., 2018 ; Gaston & Axford, 2018 ; Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ). Proposed cut-offs for this screening were either 50 years of age ( n  = 7), under 55 years ( n  = 1), or 55 years of age ( n  = 7). One paper reported that only a third of prisoners who were offered this screening accepted it, although the reasons for this were not stated (Patel & Bonner, 2016 ). Another paper suggested that a screening programme could have unintended adverse consequences, that could damage already fragile relationships between staff and people living in prison (Moore & Burtonwood, 2019 ). Whilst many screening tools were mentioned, there are currently no tools validated for use in prisons, and many of those used in the community may be inappropriate (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; du Toit et al., 2019 ; Feczko, 2014 ; Forsyth et al., 2020 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Turner, 2018 ; Williams et al., 2012 ). One validation study found that the Six-item Cognitive Impairment Test (6CIT) was not suitably sensitive for use (Forsyth et al., 2020 ). Other difficulties included the limited amount of time and resources available to screen at reception (Christodoulou, 2012 ; Patterson et al., 2016 ; Peacock et al., 2019 ), and that staff lacked ‘familiarity’ with screening tools (Peacock et al., 2019 ).

Only two papers mentioned the induction process (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) as important. A need for clearly explained information in a dementia-appropriate format (written and verbal) particularly regarding healthcare, and a recommendation that PLiPWD should be regularly reminded of rules and regulations, were suggested.

(ii) Assessment

Following the screening process, the current recommendation is that an initial healthcare assessment takes place in the first seven days after entering prison. During this initial assessment period, although not necessarily within this timeframe, care plans and allocation decisions may also be made regarding where the prisoner is placed within the prison.

An initial older-person-specific health and/or social care assessment or standard process for assessment has been recommended by ten papers, six of which were from government or related bodies. It was also suggested by some papers, that a cognitive assessment should take place at either 50 years ( n  = 6) or 55 years ( n  = 2), which should be repeated every three months ( n  = 3), six months ( n  = 5) or annually ( n  = 12), with the latter including recommendations from NICE guidelines (National Institute for Health and Care Excellence, 2017 ). One study set in England and Wales found that most prisons (60%) that screened older people, did so between 7–12 months (Forsyth et al., 2020 ). Brief and affordable tools were considered more useful (Garavito, 2020 ; Turner, 2018 ), although the Montreal Cognitive Assessment (MOCA) was recommended in the care pathway developed by Forsyth et al. ( 2020 ).

Typically, assessments were conducted by healthcare staff, GPs or a psychologist ( n  = 6), a specialist in-house assessment unit ( n  = 2), or a specific dementia admissions assessment unit ( n  = 4). For further assessment, some prisons had internal teams to refer to ( n  = 5). Forsyth et al. ( 2020 ) recommend referral to external Memory Assessment Services for assessment. A case finding tool was being piloted in one prison (Sindano & Swapp, 2019 ). Assessments included can be found in Table 2 .

Assessments also explored risk and safeguarding (National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), environmental impact (National Institute for Health and Care Excellence, 2017 ), capacity (Prison & Probation Ombudsman, 2016 ), work, education, and drug and alcohol use (Welsh Government and Ministry of Justice, 2011 ) and a person’s strengths (Hamada, 2015 ; National Institute for Health and Care Excellence, 2017 ). Prison staff contributed to some assessments of activities of daily living (ADLs) or prison-modified ADLs (Brooke et al., 2018 ; Brown, 2016 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). Challenges to Assessment can be found in Table 3 .

Twelve papers described or recommended care planning post-assessment, in collaboration with PLiPWD and primary care, or a multi-disciplinary team (MDT) of health, social care and prison staff with external specialists healthcare proxies charities or family (Brown, 2016 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Hamada, 2015 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Welsh Government and Ministry of Justice, 2011 ). However, it was suggested that prison staff be removed from the decision-making process as the dementia progresses, and be part of the ‘duty of care’ of healthcare staff and services (du Toit & Ng, 2022 ). It was recommended too that care plans be disseminated to prison wing staff (Forsyth et al., 2020 ) and peer supporters (Goulding, 2013 ), and that consent be sought for this (Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ) An ombudsman report in England and Wales noted that care plans for PLiPWD who had died in prison were inadequate (Peacock et al., 2018 ), and of the varying degrees of care planning found by Forsyth et al ( 2020 ), it was described typically as “rudimentary” (p26). Care plans are described further in Table 4 .

Many papers reported that prisons did or should make decisions about where people should be accommodated within the prison after health assessments (Brown, 2016 ; Feczko, 2014 ; Forsyth et al., 2020 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ), taking age and health into account. However, despite recommendations that PLiPWD should be placed on the ground floor on low bunks for instance (Baldwin & Leete, 2012 ; Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), there were reports that this was not happening (Inspector of Custodial Services, 2015 ). There were also recommendations for allocations to be made across a region to ensure people are appropriately placed in the prison system (Baldwin & Leete, 2012 ; Booth, 2016 ; Gaston & Axford, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Concerns were expressed about the lack of lower category places for PLiPWD (Department of Health, 2007 ), and the lack of guidance regarding placement of people with high support needs (Sindano & Swapp, 2019 ) in England and Wales.

(iii) Within-prison issues

A number of papers reported on a need for policies or frameworks to support staff to identify, assess and support people who may be living with dementia (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ), without which staff have faced difficulties in providing quality care and support (Feczko, 2014 ; Prisons and Probation Ombudsman, 2016 ). Whilst there were some examples of guidance for dementia (Hamada, 2015 ; Patterson et al., 2016 ; Treacy et al., 2019 ; Turner, 2018 ), it was suggested that all policies should be reviewed and amended to ensure that they are appropriate for older people and people living with dementia (Department of Health,  2007 ; Lee et al., 2019 ; Treacy et al., 2019 ). Specific policy areas are described in Table 5 .

Issues around staff training on dementia were discussed in the majority of papers ( n  = 54) Many of these reported that prison staff either lacked training on dementia, or that training was limited ( n  = 16), with one study in England and Wales reporting that only a quarter of prison staff had received such training (Forsyth et al., 2020 ). Perhaps consequently, a number of papers identified that prison staff required some dementia training ( n  = 19). Staff working on a specialist dementia unit reportedly had a comprehensive 40-h training (Brown, 2014 , 2016 ; Gaston & Axford, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ), and it was suggested that more comprehensive training be facilitated for officers, particularly those working with PLiPWD ( n  = 18) and offender managers ( n  = 2). A need for all staff working with PLiPWD to be supervised was also suggested (Gaston & Axford, 2018 ; Maschi et al., 2012 ). Despite a lack of consensus on content and duration (du Toit et al, 2019 ), typically, the staff training undertaken and recommended was in four areas (Table 6 ). It was also recommended that training for healthcare could be more comprehensive and focused on screening, identification, assessment, diagnoses, supervision and intervention training (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Brown, 2014 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Peacock et al, 2019 ; Treacy et al, 2019 ; Turner, 2018 ; Williams, 2014 ). It is of note that only 21% of healthcare staff in one study in England and Wales reported attending training to identify dementia (Forsyth et al., 2020 ), similar to the figures regarding prison staff in the same study.

Much of the training described in the included papers had been formulated and delivered by dementia- or older people-specific voluntary organisations (Alzheimer’s Society, 2018 ; Brooke et al.  2018 ; Brown, 2016 ; Gaston & Axford, 2018 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Although it has also been recommended to involve health and social care (Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Ministry of Justice, 2013 ; Treacy et al., 2019 ; Turner, 2018 ), and officers and peer supporters (Brooke & Jackson, 2019 ; Masters et al., 2016 ; National Institute for Health and Care Excellence, 2017 ; Treacy et al., 2019 ) in developing the training. In one study, prison staff were also trained to deliver dementia information sessions to their peers (Treacy et al., 2019 ). A suggestion of video-training packages was also made (du Toit et al., 2019 ). Dementia training typically lacked robust evaluation (Brooke et al., 2018 ), although those available generally reported benefits in their understanding of dementia, relationships, and diagnoses (Goulding, 2013 ; HMP Littlehey, 2016 ; Masters et al., 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). It was also reported that some prison staff were resistant to working with PLiPWD (Moll, 2013 ), and that resource limitations resulted in training cuts (HMP Hull, 2015 ; Treacy et al., 2019 ).

Offering healthcare across the spectrum for PLiPWDs, from acute to chronic care, with a focus on preventative and long-term care as well as palliative care was recommended by some papers (Brown, 2014 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Peacock et al, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). The development of care pathways to guide this were also recommended or formulated (du Toit et al., 2019 ; Forsyth et al., 2020 ; Peacock et al., 2019 ), although the majority (69%) of prisons in one study in England and Wales did not have one (Forsyth et al., 2020 ). Clear and formal links with local hospitals, memory clinics, forensic and community teams for planning, training, advice, support and in-reach were also present or recommended by sixteen research and guidance papers. The amount of healthcare cover in prisons in England and Wales reportedly varied with the function of the prison with largely only local prisons having 24-h healthcare staff (Treacy et al., 2019 ), and most other forms of prison having office-type hours’ healthcare cover – including sex offender prisons where the majority of older prisoners are held (Brown, 2016 ; Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ). While specialist services or units for PLiPWD exist in a number of jurisdictions (Baldwin & Leete, 2012 ; Brown, 2016 ; Cipriani et al., 2017 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Treacy et al, 2019 ), more are reportedly needed (Brooke et al., 2018 ; du Toit et al., 2019 ; Forsyth et al., 2020 ; Welsh Government and Ministry of Justice, 2011 ).

Most healthcare teams were reportedly MDT, or this was recommended, alongside joint health and social care working ( n  = 16). A number of healthcare staff acted as the lead for older people in prisons (Department of Health, 2007 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2016 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), with a recommendation that a dementia-trained nurse should lead any dementia care pathways (Forsyth et al., 2020 ) and indeed it was suggested that healthcare staff in general have training and experience in working with older people (Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ; Patterson et al., 2016 ; Public Health England, 2017b ; Treacy et al., 2019 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Whilst one of the recommended roles for healthcare was the prescription and monitoring of medication (Feczko, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ), much of the focus was on early identification and diagnosis, and keeping a dementia register (Department of Health, 2007 ; Moll, 2013 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), and the use of non-pharmacological approaches. These broadly included: psychological interventions (Goulding, 2013 ; Hamada, 2015 ; Moll, 2013 ; Wilson & Barboza, 2010 ); assistance with ADLs and social care (Feczko, 2014 ; Hamada, 2015 ; Hodel & Sanchez, 2013 ; Maschi, et al., 2012 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ); development and delivery of specialist dementia prison programmes (Brown, 2014 , 2016 ; Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Moll, 2013 ; Peacock et al., 2018 ; Wilson & Barboza, 2010 ); reablement and rehabilitation (Welsh Government and Ministry of Justice, 2011 ); relaxation (Wilson & Barboza, 2010 ); safeguarding (Hodel & Sanchez, 2013 ); and cognitive stimulation groups (Moll, 2013 ; Williams, 2014 ). Other possible roles included: training or supporting staff and peer supporters, as reported in fourteen papers, as well as advocacy (Feczko, 2014 ; Peacock et al., 2018 ; Welsh Government and Ministry of Justice, 2011 ), allocation, assessment for offending behaviour groups, risk assessments and disciplinary hearings (Booth, 2016 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ). Challenges to Healthcare are noted in Table 7 .

Palliative care

A care pathway for dying people that meets community standards was recommended (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), as was ensuring that people could choose a preferred place to die (Her Majesty's Prison & Probation Service, 2018 ). Some prisoners were moved to community hospices or hospitals (Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ), or it was felt that they should be (Her Majesty's Prison & Probation Service, 2018 ). Although it was noted that some prisons lack relationships with community hospices or palliative care services and need to foster them (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ).

A number of prisons also reportedly had hospices, particularly in the United States (Brooke et al., 2018 ; Brown, 2016 ; Feczko, 2014 ; Goulding, 2013 ; Williams et al., 2012 ), although these have not been comprehensively evaluated (Williams et al., 2012 ). It was recommended that these be staffed by MDTs (Her Majesty's Prison & Probation Service, 2018 ), including chaplains and nutritionists (Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), and many included prisoner peer supporters (Brooke et al., 2018 ; Goulding, 2013 ). The use of independent contractors was also suggested as staff-prisoner relationships were considered problematic in some prisons (Williams et al., 2012 ). Regarding family, many hospices were described as allowing more visits (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ), including one prison with family accommodation (Her Majesty's Prison & Probation Service, 2018 ). Whilst re-engaging with family was reportedly encouraged (Brown, 2016 ), a lack of support was noted (Correctional Investigator Canada, 2019 ). Suggested improvements include a family liaison officer, providing a list of counselling options, and hosting memorial services (Her Majesty's Prison & Probation Service, 2018 ).

Social care

A social care strategy for older prisoners and a social care lead for all prisons in England and Wales has been recommended (Department of Health, 2007 ; Prisons and Probation Ombudsman, 2016 ). It was reported that MDTs working with PLiPWD should and increasingly do include social workers including specialist units and hospices (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Social care roles can be found in Table 8 .

The work may be direct or may be through co-ordinating external agencies or peer supporters (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Clarity in these roles was considered paramount, particularly as uncertainty reportedly continues to exist over who is responsible for meeting prisoners’ social care needs in some prisons in England and Wales despite the passing of the Care Act, 2014 (Dementia Action Alliance, 2017 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). There was also some ambiguity around the threshold PLiPWD were expected to meet in order to access social care (Forsyth et al., 2020 ). In some instances, personal care was delivered informally by untrained and unsupported prison staff and peer supporters in lieu of suitably trained social care workers (Treacy et al., 2019 ), with issues raised about the unavailability of social care through the night (Forsyth et al., 2020 ). Where social care staff were involved in coordinating personal care for prisoners, it was reported as positive for prisoners and prison staff (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ), particularly, in one prison, where social care staff were prison-based (Forsyth et al., 2020 ).

Peer supporters

Prisoner peer supporters were operating in a number of prisons, as reported in 22 papers, and their employment was recommended by a further fourteen. Typically, these were people who had ‘good’ disciplinary and mental health records, and certainly in the US, were longer-serving prisoners. A number of papers indicated the need for peer supporters to receive training in dementia, including awareness and support (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Comprehensive 36–40 h training on dementia was delivered for those working on specialist units, including one leading to a qualification (Brooke & Jackson, 2019 ; Brown, 2016 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). Much of the training was developed and delivered by charities, particularly dementia-related ones, as reported in eleven papers. Ongoing support and supervision was offered or recommended by some prisons, provided largely by health or social care staff or charities (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Gaston & Axford, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ), with informal peer-to-peer support also described (Brown, 2016 ; Gaston & Axford, 2018 ; Treacy et al., 2019 ). The support and supervision received was found to be valuable (Brooke & Jackson, 2019 ; Brown, 2016 ; Treacy et al., 2019 ). Peer-supporter roles are listed in Table 9 .

A number of benefits to: (a) the peer supporters, (b) the prisoners they supported and, (c) the prison, were described, although formal evaluations were lacking (Brown, 2016 ; Christodoulou, 2012 ; Department of Health, 2007 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). This included: payment, development of skills which could be used on release, positive impact on progression through the system, and on self-confidence and compassion, and the creation of a more humane environment. However, frustration and distress amongst peer supporters largely when untrained and unsupported was also reported (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Inspector of Custodial Services, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ), and concerns raised in relation to an over-reliance on peers to do work that it is the statutory duty of health and social care to provide (Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). This was a particular problem in light of personal care being prohibited for peer supporters in England and Wales (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). It is also of note that the role of peer supporter may also attract the opprobrium of other prisoners, with reports that they have been seen as ‘snitches’ or ‘dogs’ in some areas (Brown, 2016 ; Goulding, 2013 ). In addition, in some prisons, the peer supporter role was not advocated due to: fear of litigation; fear of replacing staff with peers; belief that people should be acquiring more transferable skills, since many would be unable to undertake care work in the community due to their offence history (Brown, 2016 ; Goulding, 2013 ).

Accommodation

There were mixed views regarding accommodation for PLiPWD. A continuum of prison accommodation was suggested from independent to 24-h care (including assisted living) (Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Williams et al., 2012 ). A number of papers ( n  = 18) recommended that there should be some form of alternative, more appropriate accommodation developed, potentially regional, including secure facilities possibly with a palliative orientation (Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Sfera et al., 2014 ). However, there were concerns about the availability, costs and staffing of specialist units, and distances that family would have to travel to visit despite potential benefits (du Toit et al., 2019 ; Moore & Burtonwood, 2019 ). It was also suggested that PLiPWD should be released to live in the community instead (Correctional Investigator Canada, 2019 ).

Within prisons, there was a debate evident within the papers about whether PLiPWD should be accommodated in separate units or integrated within the general prison population, which had generated little clear evidence and mixed views (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). Authors have suggested that specialist or separate wings focused on older people or those with dementia were safer, met peoples’ needs better, and offered better care, support and programmes than integrated units (Brown, 2014 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Goulding, 2013 ; Maschi et al., 2012 ; Murray, 2004 ; Treacy et al., 2019 ; Williams et al., 2012 ), as long as they were ‘opt-in’ for prisoners and staff (Correctional Investigator Canada, 2019 ; Moll, 2013 ; Treacy et al., 2019 ; Williams et al., 2012 ), and opportunities to get off the wing to socialise with others are provided (Treacy et al., 2019 ). The types of ‘specialist’ accommodation that PLiPWD were living in are reported in Table 10 . It is of note that papers reported a highly limited number of beds available in specialist units (Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ; Turner, 2018 ), and that a number of older prisoner-specific prisons were being closed due to costs (Turner, 2018 ).

Four papers described the benefits of older people and those PLiPWD residing within the general prison population (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Williams et al., 2012 ). Those living with dementia reported a benefit from socialising with, and being cared for by, younger people (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). The presence of older people also reportedly calmed younger prisoners (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). Importantly, removing people from their prison social networks may have a detrimental effect (Williams et al., 2012 ), and living on specialist units can be stigmatising (Treacy et al., 2019 ).

Regime and activities

The maintenance of prisons regimes is the primary focus of prison officers (Brooke & Jackson, 2019 ). However, there was a reported need ( n  = 19) for PLiPWD to have equal access to activities and services including work, education, gym, library and day centres where they exist, as well as a structured and varied regime on the wing on which they were accommodated, and support to access these. This support could include providing adequate seating (Welsh Government and Ministry of Justice, 2011 ), or giving prisoners more time to accomplish activities, and to assist if needed (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ). Other recommendations included an overall relaxation of regimes (Gaston & Axford, 2018 ; Treacy et al., 2019 ), an ‘open door’ policy (Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ), more visible staff (The King's Fund, 2013 ), and creating a more communal social environment (Christodoulou, 2012 ). On-wing social activities are described in Table 11 .

Having on-wing work available or alternative means for prisoners who are unable to work to make money was also reportedly important (Christodoulou, 2012 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston and Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 , 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Murray, 2004 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). It was suggested that people with dementia should have the chance to work if wanted, and adaptations could be made to work programmes or working days made shorter to facilitate this. Some prisons had specific roles which involved lighter, simple, repetitive tasks such as gardening (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Treacy et al., 2019 ). Day centres existed in some prisons, or were thought to be feasible (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), and it was suggested that attendance at these could constitute meaningful paid activity (Her Majesty's Prison & Probation Service, 2018 ). The centres were largely developed and facilitated by charities, and ran a wide variety of social, therapeutic, recreational, arts and advice-centred activities (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ).

Equal access to educational activities, including rehabilitation and offending behaviour programmes, was highlighted as important, particularly where attendance is needed to facilitate people’s progression through the system (Booth, 2016 ; Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Some prisons provided, or felt there was a need for, particular educational activities for PLiPWD and adaptations may be, or have been, made to learning materials and equipment, content and pace (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Dedicated library sessions have been designated in some prisons, and some libraries can and do stock specialist resources including books, audiobooks, reminiscence packs and archives of local photos, music and DVDs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ;Treacy et al., 2019 ; Williams, 2014 ). Educational materials could and have been available between sessions to aid memory with distance learning also possible (Brooke & Jackson, 2019 ; Her Majesty's Prison & Probation Service, 2018 ). Suggestions for alternatives for PLiPWD focused on activity and stimulation (du Toit & Ng, 2022 ; Gaston, 2018 ; Her Majesty's Prison & Probation Service, 2018 ), preparing for retirement classes (Department of Health, 2007 ), health promotion (Brooke et al., 2018 ; Christodoulou, 2012 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Maschiet al., 2012 ; Murray, 2004 ; Welsh Government and Ministry of Justice, 2011 ), the arts (Brooke & Jackson, 2019 ) and IT classes (Her Majesty's Prison & Probation Service, 2018 ). Prisoner forums or representative could also be consulted regarding regimes and activities (Moll, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Challenges to regimen and activities are described in Table 12 .

Environment

A large number ( n  = 42) of the included papers discussed changes that prisons had made, or should make, to the built environment in order to be more suitable for PLiPWD – in one study in England and Wales, around half of prisons surveyed had made such environmental modifications (Forsyth et al., 2020 ). These focused on: (i) prisoners’ cells, (ii) bathrooms, (iii) dining hall, (iv) outside space and recreation areas, and (v) overall general prison environment (Table 13 ).

Problematically, the age and dementia-inappropriateness of buildings are considered a challenge (Baldwin & Leete, 2012 ; Brown, 2016 ; Dementia Action Alliance, 2017 ; Forsyth et al., 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). Difficulties in navigating prisons where everywhere looks the same (Dementia Action Alliance, 2017 ; Murray, 2004 ; Treacy et al., 2019 ), and the lack of budget (HMP Littlehey, 2016 ; HMP Littlehey, 2016 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ) were also reported issues. It was suggested that the use of dementia-friendly environmental checklists could be useful, potentially with input from occupational therapists, health and social care, and dementia charities and in-house education, work and estates departments (Brown, 2014 ; Christodoulou, 2012 ; Dillon et al., 2019 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Peacock et al., 2018 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). Hope was expressed that newly built prisons would be more dementia-friendly (Dementia Action Alliance, 2017 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

Formal policies and procedures should be in place to help maintain links between family and prisoners, and to foster an understanding of the central importance of families particularly for PLiPWD (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ). Some papers described how prisons could support contact by: giving help and additional time to make telephone calls and arranging visits in quieter spaces (Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ); increasing the number of visits (Jennings, 2009 ); and allowing for accumulated visits or transfers to other prisons for visits closer to home (Her Majesty's Prison & Probation Service, 2018 ). Family communication – additional information can be found in Table 14 .

External organisations

One review suggested that external voluntary agencies were not often contacted or referred to, despite their potential benefits in terms of costs and support for staff and PLiPWDs (du Toit et al., 2019 ). However, other papers reported that charities for PLiPWD, or older people, were involved in (or were recommended to be involved in): designing and/or delivering dementia training; being part of MDTs; informing the design of referral processes, screening, assessment and case finding tools; consulting on environmental design; creating and delivering social care plans (including running activity centres); advice and support; advocacy and; co-facilitating a cognitive stimulation therapy group (Alzheimer’s Society 2018 ; Brooke et al., 2018 ; Brown, 2014 , 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Williams, 2014 ). It was also recommended that external organisations need to have a better knowledge and understanding of prisons and people living in prison, in order to better manage risk, and for clear information sharing protocols (du Toit & Ng, 2022 ).

(iv) Transfers

During the course of their sentence, people in prison may be transferred to other prisons for various reasons or to receive treatment in hospital. The need for MDT transfer plans to be developed was reported (Welsh Government and Ministry of Justice, 2011 ), as was the need to limit the number of prisoner transfers as moving accommodation is likely to have an adverse effect (Her Majesty's Prison & Probation Service, 2018 ; Patterson et al., 2016 ). It was recommended that transfers should take the distance from family and friends into account (Her Majesty's Prison & Probation Service, 2018 ), and that the ‘receiving’ facility (prison or healthcare setting) should be liaised with regarding health and social care, and risk (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) to ensure continuity of care (Cipriani et al., 2017 ). A standard document transfer protocol was also postulated as useful, as documents need to be forwarded quickly as well (Brown, 2016 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). At the receiving facility, it was suggested that assessments and care plans should be reviewed on the day of the transfer (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government, 2014 ), and for re-inductions to be facilitated for prison transfers (Her Majesty's Prison & Probation Service, 2018 ).

(v) Release and resettlement

Most prisoners will be released from prison at the end of their sentence, although a number may die before their time is served. A number of areas were highlighted regarding the release and resettlement of PLiPWD, including the possibility of early release due to dementia.

Early release

A number of papers advocated for compassionate release policies and their actual use, or alternative custodial placements such as halfway houses or secure nursing homes, that would effectively result in the early release of PLiPWD (Brown, 2016 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Pandey et al., 2021 ; Turner, 2018 ; Williams et al., 2012 ). Although, it has also been noted that early release may not be a popular idea for some sections of the community (du Toit et al., 2019 ; Garavito, 2020 ), it was also suggested that raising community awareness of dementia may ameliorate this (du Toit & Ng, 2022 ). It was reported that prisoners with dementia should be considered in any criteria set forth for early release, particularly given the high cost/low risk ratio which they represent (Baldwin & Leete, 2012 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Murray, 2004 ; Williams et al., 2012 ). For prisoners who do not understand the aims of prison, continuing to hold them may be a contravention of human rights and equality laws – particularly where health and social care is inadequate (Baldwin & Leete, 2012 ; Dementia Action Alliance, 2017 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Murray, 2004 ). It was also emphasised that the existence of units and programmes for PLiPWD should not be used to legitimise prison as an appropriate place for PLiPWD (Correctional Investigator Canada, 2019 ). More information can be found in Table 15 .

Resettlement

Ten different areas were identified in the literature which related to the issues PLiPWD leaving prison may face on their release and resettlement into the community, these were:

(a) In-prison release preparation

Specific pre-release programmes or services for older people or those living with dementia may be required (Department of Health, 2007 ; Williams et al., 2012 ), with prisoners being cognitively screened prior to release (Goulding, 2013 ), although the latter was only found in 10% of prisons in one study (Forsyth et al., 2020 ). Other suggestions for programme content included: self-efficacy, health, staving off dementia and associated anxiety, accessing services, addressing institutionalisation, setting up email addresses, and the provision of information packs on national, regional and local services and resources (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

It has been suggested that release plans and transitions be facilitated by an MDT including prisoners, the voluntary sector, offender managers, and other appropriate community-based organisations (du Toit et al., 2019 ; Feczko, 2014 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Recommended plan content included: risk management strategies, health, social care, housing, finance, employment, leisure and voluntary sector considerations (Welsh Government and Ministry of Justice, 2011 ). It was also suggested that Circles of Support and Accountability (CoSA), primarily associated with sex offenders, could be set up for PLiPWD as a means to support those leaving prison and settling back into the community particularly without family support (Her Majesty's Prison & Probation Service, 2018 ).

Challenges to release preparation were identified as: a lack of resources, (Turner, 2018 ) the lack of clarity regarding staff resettlement roles (Inspector of Custodial Services, 2015 ), and the lack of resettlement provision offered at sex offender prisons in England and Wales (Her Majesty's Prison & Probation Service, 2018 ).

A number of papers reported the key role that family and friends can or do play in supporting PLiPWD leaving prison, and that this should be supported or facilitated by prison staff (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ). Initially this could include encouraging diagnosis disclosure (Dillon et al., 2019 ), using prison leave to maintain relationships (Her Majesty's Prison & Probation Service, 2018 ), involvement in discharge planning (Welsh Government and Ministry of Justice, 2011 ), and placing prison leavers close to family upon release and ensuring family are supported (Correctional Investigator Canada, 2019 ; Gaston & Axford, 2018 ). Where PLiPWD lack family, setting up CoSAs as described above may be useful (Her Majesty's Prison & Probation Service, 2018 ).

(c) Probation

It was suggested that probation staff should have training to work with older people, and that some offender managers could specialise in this work (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ). Probation officers or offender managers are or can be involved in resettlement planning, (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), arranging accommodation (Inspector of Custodial Services, 2015 ), liaising with agencies such as health care or social services, checking that PLiPWD are accessing these services and disseminating reports of to-be released prisoners to relevant parties (Department of Health, 2007 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Importantly, the forwarding of important documents to offender managers by the prison should be routine (Department of Health, 2007 ; Moll, 2013 ). It was also recommended that probation staff should visit people in prison before release if they live out of area (Department of Health, 2007 ). The work of probation services was reportedly hampered by limited resources (Brown, 2016 ).

Continuity of care upon release can be difficult, and it was suggested that it could be a role of prison healthcare to ensure this (including registering with the local GP and dentist (Cipriani et al., 2017 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Welsh Government and Ministry of Justice, 2011 ). There appeared to be some differences regarding the distribution of full healthcare reports to offender managers and other appropriate agencies with some prisons sending them, some only if requested, and some not providing them on grounds of confidentiality (Moll, 2013 ). Typically, it was recommended that it was better for to-be released older prisoners if these reports were disseminated (Department of Health, 2007 ). It was also suggested that healthcare staff in prison and from the community form part of multi-disciplinary release planning, and that these plans include health considerations and healthcare staff advice on issues of accommodation (du Toit & Ng, 2022 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ).

(e) Social care

Some papers reported that social workers can and should be involved in the process of resettlement (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ) and release preparation (Goulding, 2013 ). Continuity of social care arranged with the local authority was also recommended (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(f) Accommodation

Release planning should include plans for accommodation, and involve housing agencies or care services in the community in that planning (Welsh Government and Ministry of Justice, 2011 ). Importantly, people in prison may need help in registering for housing, and their homes may be in need of adaptation in response to their health or social care needs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Nursing homes and other care providing facilities were reported to be reluctant to accommodate people who have been in prison (Brown, 2014 ; Brown, 2016 ; Booth, 2016 ; Correctional Investigator Canada, 2019 ; du Toit et al., 2019 ; Gaston, 2018 ; Garavito, 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ). This was described as particularly the case for those who were living with dementia (Brown, 2014 ; Correctional Investigator Canada, 2019 ; Dillon et al., 2019 ), with further issues reported in accommodating those who have committed sex offences (Brown, 2014 , 2016 ; Dillon et al., 2019 ; Garavito, 2020 ; Inspector of Custodial Services, 2015 ). Concerns regarding the safety of other residents and the views of their families, and the rights of victims in general, were cited as reasons behind these placement difficulties (Brown, 2014 ; Goulding, 2013 ) – one paper reported that there had been community protests (Brown, 2016 ).

It was suggested that prisons need to build better relationships with care providers in the community, which had reportedly been forged by some (Brown, 2016 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ), and that they could also provide education and support to these services (Booth, 2016 ). However, it was also noted that there may be a need for specialist residential units to be created in the community for people released from prison with dementia (Inspector of Custodial Services, 2015 ), with an example of a state-run facility for ex-prisoners in the United States (Goulding, 2013 ), and particular attention for younger ex-prisoners with dementia (Brown, 2014 ). A number of papers reported that if accommodation could not be arranged for people, this largely resulted in them remaining in prison until it was (Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Peacock et al., 2018 ; Soones et al., 2014 ).

(g) Finance

Imprisonment likely leads to a loss of income, meaning that older prisoners who may have served more lengthy sentences are likely to be poorer, particularly if unable to work in prison (Baldwin & Leete, 2012 ; Gaston, 2018 ). Therefore, it was suggested that release planning ought to include issues of finance (Welsh Government and Ministry of Justice, 2011 ). Given that it has been suggested that people in prison should be given advice on pensions and welfare benefits, and help to arrange these (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), addressing this would seem to be an area of particular use for older people leaving prison who may have additional problems in these areas, and for those who may need assistance in arranging their financial affairs because of their deteriorating health problems.

(h) Employment and education

People’s employment prospects are likely to be impacted upon release from prison, particularly for older people who may have served long sentences (Gaston, 2018 ). Where appropriate, it was recommended that release planning should include issues around employment (Welsh Government and Ministry of Justice, 2011 ), that information packs for people should include sections on education and employment, and that it could be useful to help people make links with the Department for Work and Pensions (Her Majesty's Prison & Probation Service, 2018 ).

(i) Leisure

Leisure activities and resources could be considered in release planning, and included in pre-release information packs for prisoners (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(j) Charities and voluntary sector organisations

It was recommended in a number of papers that charity and voluntary sector organisations working with PLiPWD be involved in release planning (Department of Health, 2007 ; du Toit et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), continuity of care (Moll, 2013 ), and in providing support during the transition and after (du Toit & Ng, 2022 ; Welsh Government and Ministry of Justice, 2011 ). It was also suggested that in general it would be useful for PLiPWD to have contact with these organisations (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ), and that they may be well-placed to develop information packs for prisoners on release regarding local amenities, services and resources (Her Majesty's Prison & Probation Service, 2018 ).

(vi) Cross-cutting themes

Eight more generalised concerns were also described which had a clear impact on the passage of PLiPWD through prison, on release and resettlement in the community, and on the issues raised thus far in the review.

Principles-philosophy

The principles suggested to underpin the support of PLiPWD are that it should be person-centred, holistic, adhere to human rights and dignity principles, proactive, health promoting, and enabling – making choices but supported if needed (Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Mackay, 2015 ; Maschi et al., 2012 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ). Conversely, clashes in philosophies between prison staff, and health and social care staff have been reported with security trumping care in many cases, which can have a negative impact (du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Mackay, 2015 ; Murray, 2004 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ; Williams, 2014 ). It was suggested that positioning dementia as more than just a health issue and fostering a whole-prison care-custody model or approach, with clearly defined roles for ‘care’ and ‘custody’, may be useful in resolving this (du Toit & Ng, 2022 ; Public Health England, 2017b ; Welsh Government and Ministry of Justice, 2011 ).

A number of papers ( n  = 15) reported that budget and resource limitations had a variety of negative impacts including difficulties in providing: appropriate assessment, support and accommodation to PLiPWD; specialist accommodations, plans for which were then curtailed; delivering programmes and activities; healthcare cover; and, staff training (Booth, 2016 ; Christodoulou, 2012 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Dillon et al., 2019 ; du Toit et al., 2019 ; du Toit & Ng, 2022 ; Goulding, 2013 ; HMP Hull, 2015 ; Jennings, 2009 ; Mackay, 2015 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; Pandey et al., 2021 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Treacy et al., 2019 ; Turner, 2018 ). Ultimately, lack of resources has reportedly led to a system that is not able to cope appropriately with PLiPWD (Moll, 2013 ; Williams et al., 2012 ; Wilson & Barboza, 2010 ), with associated problems transferring out of the prison system into probation and care systems when people are released (Williams et al., 2012 ).

It has been suggested that PLiPWD in prison should be treated as if they have capacity to make decisions such as giving or withholding consent for treatment, unless it is proven otherwise. This is consistent with legislation such as the Mental Capacity Act (Prisons and Probation Ombudsman, 2016 ). It has been recommended that healthcare staff should conduct capacity assessments if there are concerns (National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), and be trained to do so (Maschi et al., 2012 ; Welsh Government, 2014 ). It is of note that an ombudsman report showed that PLiPWD who died lacked access to mental capacity assessments (Peacock et al., 2018 ). For PLiPWD, who are likely to lack capacity as their condition progresses, early education about, and development of, advance directives has been advocated (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ), and staff should be trained on this (Maschi et al., 2012 ). It has also been suggested that family members, independent mental capacity advocates or healthcare proxies could or should be used for PLiPWD who lack capacity in making care, welfare and financial decisions (Brown, 2016 ; Soones et al., 2014 ), supported by legislation and oversight, as opposed to prison or healthcare staff making decisions (Correctional Investigator Canada, 2019 ).

The issue of ‘risk’ related to PLiPWD revolves around four areas: (i) assessment, (ii) management, (iii) disciplinary procedures, and (iv) safeguarding. Full details can be found in Table 16 .

There were a number of additional facets to risk concerns regarding PLiPWD described in the papers. There were concerns that the lack of understanding of the impact of dementia on people’s behaviour could ultimately lead to people being held in prison for longer periods on account of seemingly transgressive or aggressive behaviour that could in fact be related to their dementia difficulties (Dementia Action Alliance, 2017 ; Mistry & Muhammad, 2015 ; Treacy et al., 2019 ). In one study, a prisoner with dementia was transferred to another prison because staff felt that they were ‘grooming’ an officer (Treacy et al., 2019 ), likely lengthening their overall prison stay. There was also a recurring issue in fatal incidents investigations in England and Wales of prisoners being restrained whilst dying in hospital, a practice described as unnecessary in light of their likely frail state (Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ). One paper suggested linking future accommodation options and considerations for Release on Temporary Licence to a PLiPWD’s risk of reoffending, as well as the severity of their symptoms (Forsyth et al., 2020 ). Moore and Burtonwood ( 2019 ) also observed that a lack of risk assessment protocols was a barrier to release of PLiPWD., and as Table 16 suggests, a comprehensive risk assessment, applied by appropriately trained staff should make health and its impact on future offending more salient to aid this.

There were recommendations that PLiPWD should have the opportunity to make choices in their treatment and care. This included input into care plans or making informed decisions about their care (Department of Health, 2007 ; du Toit & Ng, 2022 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), as well as developing advance directives particularly early in a person’s sentence (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Pandey et al., 2021 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ), and choosing ‘preferred’ places to die (Her Majesty's Prison & Probation Service, 2018 ).

Protected characteristics

There was a reported need for culturally appropriate assessments, treatment and activities (Brooke et al., 2018 ; Department of Health, 2007 ; Hamada, 2015 ; Welsh Government and Ministry of Justice, 2011 ), spiritual support (Welsh Government and Ministry of Justice, 2011 ), multilingual information (Welsh Government and Ministry of Justice, 2011 ), and the recognition of gender differences in dementia healthcare needs (Brown, 2014 ; Department of Health, 2007 ; Williams et al., 2012 ). It was also highlighted that racism makes the experience of living with dementia in prison more problematic (Brooke et al., 2018 ; Brown, 2014 ; Correctional Investigator Canada, 2019 ). There were some examples of policy and practice within prisons which considered some protected characteristics: assessment tools in different languages (Patterson et al., 2016 ), additional support for PLiPWD to plan care (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and the development of culturally appropriate care planning (Hamada, 2015 ). Hamada ( 2015 ) also advocated assessment and treatment that was culturally ‘competent’ and respectful, and which acknowledged the importance of culture and diversity.

An overall need to tackle dementia- and age-related stigma was also reported in some papers, and the need to foster cultures that are age-respectful should be reflected in staff training (Department of Health, 2007 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), In addition, practices which openly discriminate such as the lack of: dedicated dementia resources (Turner, 2018 ), appropriate lower category prison places (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and appropriate accommodation on release, which at times prevents release, should also be challenged (Correctional Investigator Canada, 2019 ; Forsyth et al., 2020 ; Ministry of Justice, 2013 ; Prisons and Probation Ombudsman, 2016 ). There was also a lack of research into the interaction between protected characteristics and dementia in prison (Brooke & Jackson, 2019 ; Treacy et al., 2019 ; Williams et al., 2012 ).

Collaboration

Many papers advocated the need for prisons and specialist dementia units to adopt a collaborative MDT approach drawing from staff teams across the prison regarding: the identification and support of prisoners with dementia, care planning, the disciplinary process, the development, dissemination and implementation of policy, and in environmental change and the building of new prisons (Brooke et al., 2018 ; Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; The King’s Fund 2013 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 , 2014 ; Williams, 2014 ). There were examples of prisoners collaborating with staff in the care of PLiPWD as peer supporters, and having joint staff-prisoner supervision and training (Brooke & Jackson, 2019 ), of joint staff-prisoner wing meetings in one prison (Treacy et al., 2019 ), and of the co-designing of services and activities in others (Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). It was suggested that this collaborative way of working should be supported by an information sharing protocol, clear definitions of staff and peer supporter roles and responsibilities, and training (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; HMP Littlehey, 2016 ; Turner, 2018 ). It was reported that there had been a lack of communication and coordination of this process in some prisons which had a negative impact on all involved (Brooke & Rybacka, 2020 ; Forsyth et al., 2020 ; Moll, 2013 ; Prisons and Probation Ombudsman, 2016 ).

It was also suggested that the prisons collaborate with healthcare, hospice and dementia specialists in the community and with external charitable organisations (Brooke et al., 2018 ; Brown, 2014 ; Cipriani et al., 2017 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Williams, 2014 ). In addition, inter-prison networks were recommended to be developed to share good practice across prisons (Dementia Action Alliance, 2017 ; Moll, 2013 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ).

Information-sharing

A number of papers ( n  = 7) recommended the need for a clear information sharing protocol regarding the assessment and support of PLiPWD (Brooke et al., 2018 ; Dillon et al., 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Moll, 2013 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ), or a register (Forsyth et al., 2020 ). Particular attention to the interface between healthcare and prison staff and peer supporters was suggested, where it has been reported that privacy regulations have sometimes prevented contributions to collateral histories (Feczko, 2014 ) and the sharing of care plans, impairing their ability to offer appropriate support (Inspector of Custodial Services, 2015 ). Also, it may be against the wishes of the person with dementia, and informed consent should be sought (Forsyth et al., 2020 ; Moll, 2013 ). This lack of information can have a detrimental effect on a person’s health and wellbeing (Brown, 2014 , 2016 ; Feczko, 2014 ; Inspector of Custodial Services, 2015 ), and so discussion of this was highlighted as important, particularly where the safety of the person or others were concerned (National Institute for Health and Care Excellence, 2017 ). A care plan which gives only very basic information to staff and peer supporters was used in a couple of prisons (Goulding, 2013 ; Williams, 2014 ).

There also appeared to be variance with respect to whether healthcare staff disclose a dementia diagnosis to the person diagnosed with dementia. A couple of prisons’ policy was to share a diagnosis and involve family in doing so (Maschi et al., 2012 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ), however, in one prison disclosed if a person was judged to be able to cope with it, and another only disclosed if asked (Brown, 2016 ). The importance of disclosure to family allowing them to contribute to assessments, planning and support was also emphasised in some papers (Brown, 2016 ; Dillon et al., 2019 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ).

This review has explored the literature regarding all parts of the custodial process and its impact on people living in prison with cognitive impairment and dementia, which includes: reception, assessment, allocation, training, policy, healthcare, accommodation, adaptation, routine, access to family and external agencies, transfer and resettlement. We found evidence that problems had been identified in each of these parts of the process. We also identified a number of cross-cutting themes which interacted with the issues identified across the prison journey including: principles or philosophy regarding care; capacity; resources; considerations of risk; scope for choice; peoples’ protected characteristics; collaboration; and, information sharing. Broadly, our findings were similar to those found in previous reviews, regarding the problems with the prison process identified, and the lack of robust outcomes, and policy guidance regarding PLiPWD (Brooke and Rybacka, 2020 ; Peacock et al., 2019 ).

The aim of this review was to identify areas of good practice and for recommendations that could inform the development of prison dementia care pathways. There is a considerable breadth to the findings, but the main recommendations that have arisen from the review are:

To screen prisoners for cognitive difficulties at reception, from either 50 or 55 years

An initial older-person specific health and social care assessment, post-screening – from either 50 or 55 years, and repeated (from 3 – 12 months)

A spectrum of healthcare to be delivered including preventative, long-term and palliative care, with continuity of care upon release, and in tandem with social care

Mixed views about appropriate accommodation, but it needs to run along a continuum from independent living to 24-h care, with decisions possibly made after health assessments

Environments need to be made more older-person or dementia friendly, using checklists available, and with the voluntary sector as potential partners

A need for prison staff training on dementia, and further training for healthcare staff

The use of peer supporters was broadly reported positively, and were seemingly frequently used. However, there needs to be adequate training and support, and not to be used to do the work that is the statutory duty of health and social care staff

Equal access to activities and services, especially programmes which help people move through the system (such as offending behaviour), as well as opportunities to earn additional monies, and that provide structure and routine on wings

The maintenance of family links, and for families to be supported, are important for PLiPWD, and may be particularly so on release and resettlement

Prisons may also need to work with external care agencies to ensure placements upon release, or alternative specialist care facilities may need to be created

The main barriers to implementing these recommendations are a lack of policy or guidance at local, regional and national levels to support staff in working with PLiPWD, and also the lack of budget and resources available. The latter would also include infrastructure issues, such that a number of prisons are not appropriate for people living with dementia, and could be expensive to modify to become so, coupled with a lack of currently available alternative facilities for PLiPWD to be released to in the community. The lack of use of compassionate release is also an issue here, including during the COVID-19 pandemic, with only 54 people released (Halliday & Hewson, 2022 ). Lastly, the roles that each professional and peer group had regarding PLiPWD needed clarification in some prisons, including some resolution of the ‘clash’ of philosophies (control v care) underpinning this.

In terms of ‘solutions’, multiple organisations have advocated for years for the need for national policy to assist prisons with older people in prison, including those living with dementia (Cornish et al., 2016 ; HM Inspectorate of Prisons, 2004 , 2019 ; Prisons & Probation Ombudsman, 2016 , 2017 ). This was eventually accepted and commissioned by the UK government, although it has not been released as yet (Justice Committee, 2020 ). It has also been suggested that at a more local level, existing policies could be adapted to be more appropriate for PLiPWD – such as restraint policies for frail prisoners, and disciplinary procedures which reflect the impact that dementia may have on behaviour (Department of Health, 2007 ; Treacy et al., 2019 ). Considerations around capacity and consent would need to be weaved in, as well as a focus on the intersection with other protected characteristics. These adaptations would also need to extend to services and activities to ensure that people have equal access and opportunities. A number of reports highlighted the contribution that greater collaboration with partners in external health and social care teams could have, as well as partnerships with the voluntary sector. These could potentially assist in multiple areas including training staff and peer supporters, providing activities, assisting release preparation, at a relatively low cost, to high benefit. There were some recommendations that prisons adopt a whole-prison approach to dementia that focuses on being person-centred, health and human rights focused that may help to ameliorate some differences in philosophical approach between various staff and peer groups in prisons.

A number of potential areas for future research were also indicated by the literature, which would also support the development of prison pathways. These would include: (i) induction to prison, and (ii) release and resettlement from prison, which are important beginning and end-points, but which are under-researched; (iii) the validation of a screening tool for use in prisons, and the development or adaptation of prison-specific health and social care assessments; (iv) the interaction of protected characteristics and dementia, and the need for more culturally and gender aware pathways; (v) the paucity of research conducted in low and middle-income countries, that needs to be addressed; (vi) dementia and age-related stigma in prisons; and (vii) evaluations of all elements of the prison pathway for PLiPWD to undertaken including training, the role of peer supporters, and targeted programmes.

Strengths and limitations of the review

One key strength of this review is its comprehensiveness, particularly as it includes much grey literature. Given the lack of robust evaluation in this area, it was felt that this was necessary to represent the volume of work that has nonetheless taken place. There are, however, a number of limitations of this review. Firstly, despite the use of broad search terms, there may be the possibility that some relevant research was missed, either because of deficiencies in our searches or because of publication bias. Additionally, whilst there are twenty-two guidance and inspection documents included in this review, it is possible that some grey literature might also remain unidentified, particularly outside of the UK where the review was undertaken. Secondly, this review may be subject to a selection bias, as the yielded search results might have included literature that were excluded but which may have indirectly impacted upon the care pathways elements explored in the review. There is also a language bias, and whilst this may reflect the languages spoken by the review team members, it is also reflective of the “northern epistemic hegemony” (Aas, 2012 ), that also may have resulted in the review being largely populated by papers from high income countries. Thirdly, no formal assessment of study quality was undertaken. This is in keeping with scoping review methodology which focuses on breadth, but is nonetheless an important shortcoming inherent in scoping reviews more generally (Arksey & O’Malley, 2005 ).

We have completed the most comprehensive review of the literature on PLiPWD in prisons to date that we have found, including a synthesis of the extensive grey literature, and found important gaps in the literature. Our review includes a mixture of academic research, policy and position papers which identified an increasing number of prisoners with dementia or cognitive impairment as an issue, but there were more limited descriptions of what should be done, and even less describing implementation of these. Most of the literature came from developed nations where extensive assessment and care services are in place for PWD in the community, although a key question is whether prison populations are given easy access to these existing services or whether bespoke services for prisoners are required. We suggest this literature now needs to be drawn together to inform interventions for PLiPWD in the criminal justice system which can be piloted and evaluated, and inform the development of robust dementia care pathways for prisons.

Availability of data and materials

All data and materials used in this review are included in this article and its appendices.

There is no standard cut-off age for older people living in prison, but it is typically set at least ten to fifteen years lower than the general population. People in prison are thought to age more rapidly due to both pre- and post-imprisonment chaotic lifestyles, substance misuse and less healthcare access and use, as well as the ‘pains of imprisonment’. See Williams et al., ( 2012 ) for further discussion.

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Acknowledgements

We would like to thank all the funders for their contributions towards this review. We also would like to thank the key stakeholders, especially the prison advisors and old age psychiatry and care advisors, who contributed towards shaping and contextualising this evidence review.

This is a summary of research which was partly funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England - previously, the Collaboration for Leadership in Applied Health Research and Care East of England – and the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT), as part of the wider prison care programme. The views expressed are those of the author(s).

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Samantha Treacy

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Nelum Samarutilake, Ben R. Underwood & Tine Van Bortel

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ST was the lead researcher and conceptualised, designed, searched, analysed and interpreted data, and led on writing the manuscript. VP provided crucial and extensive library support. SM and NS were involved in screening and extracting data as well as analysis (SM), reviewing and editing various versions of the manuscript. TVB was the Principle Investigator/Study Lead and contributed towards conceptualisation, design, data quality control, manuscript reviewing and editing, and supervising all aspects of the study. BRU was Co-Principle Investigator and provided clinical advice input. ST, SM and TVB revised the peer-reviewed manuscript. All authors read and approved the final submitted manuscript.

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Correspondence to Tine Van Bortel .

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Additional file 1..

Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist.

Additional file 2. Appendix 2:

Example search strategy.

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Treacy, S., Martin, S., Samarutilake, N. et al. Dementia care pathways in prisons – a comprehensive scoping review. Health Justice 12 , 2 (2024). https://doi.org/10.1186/s40352-023-00252-7

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Received : 07 September 2023

Accepted : 16 November 2023

Published : 20 January 2024

DOI : https://doi.org/10.1186/s40352-023-00252-7

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