sample qualitative research results and discussion

How To Write The Discussion Chapter

A Simple Explainer With Examples + Free Template

By: Jenna Crossley (PhD) | Reviewed By: Dr. Eunice Rautenbach | August 2021

If you’re reading this, chances are you’ve reached the discussion chapter of your thesis or dissertation and are looking for a bit of guidance. Well, you’ve come to the right place ! In this post, we’ll unpack and demystify the typical discussion chapter in straightforward, easy to understand language, with loads of examples .

Overview: The Discussion Chapter

• What  the discussion chapter is
• What to include in your discussion
• How to write up your discussion
• A few tips and tricks to help you along the way
• Free discussion template

What (exactly) is the discussion chapter?

The discussion chapter is where you interpret and explain your results within your thesis or dissertation. This contrasts with the results chapter, where you merely present and describe the analysis findings (whether qualitative or quantitative ). In the discussion chapter, you elaborate on and evaluate your research findings, and discuss the significance and implications of your results .

In this chapter, you’ll situate your research findings in terms of your research questions or hypotheses and tie them back to previous studies and literature (which you would have covered in your literature review chapter). You’ll also have a look at how relevant and/or significant your findings are to your field of research, and you’ll argue for the conclusions that you draw from your analysis. Simply put, the discussion chapter is there for you to interact with and explain your research findings in a thorough and coherent manner.

What should I include in the discussion chapter?

First things first: in some studies, the results and discussion chapter are combined into one chapter .  This depends on the type of study you conducted (i.e., the nature of the study and methodology adopted), as well as the standards set by the university.  So, check in with your university regarding their norms and expectations before getting started. In this post, we’ll treat the two chapters as separate, as this is most common.

Basically, your discussion chapter should analyse , explore the meaning and identify the importance of the data you presented in your results chapter. In the discussion chapter, you’ll give your results some form of meaning by evaluating and interpreting them. This will help answer your research questions, achieve your research aims and support your overall conclusion (s). Therefore, you discussion chapter should focus on findings that are directly connected to your research aims and questions. Don’t waste precious time and word count on findings that are not central to the purpose of your research project.

As this chapter is a reflection of your results chapter, it’s vital that you don’t report any new findings . In other words, you can’t present claims here if you didn’t present the relevant data in the results chapter first.  So, make sure that for every discussion point you raise in this chapter, you’ve covered the respective data analysis in the results chapter. If you haven’t, you’ll need to go back and adjust your results chapter accordingly.

If you’re struggling to get started, try writing down a bullet point list everything you found in your results chapter. From this, you can make a list of everything you need to cover in your discussion chapter. Also, make sure you revisit your research questions or hypotheses and incorporate the relevant discussion to address these.  This will also help you to see how you can structure your chapter logically.

Need a helping hand?

How to write the discussion chapter

Now that you’ve got a clear idea of what the discussion chapter is and what it needs to include, let’s look at how you can go about structuring this critically important chapter. Broadly speaking, there are six core components that need to be included, and these can be treated as steps in the chapter writing process.

Step 1: Restate your research problem and research questions

The first step in writing up your discussion chapter is to remind your reader of your research problem , as well as your research aim(s) and research questions . If you have hypotheses, you can also briefly mention these. This “reminder” is very important because, after reading dozens of pages, the reader may have forgotten the original point of your research or been swayed in another direction. It’s also likely that some readers skip straight to your discussion chapter from the introduction chapter , so make sure that your research aims and research questions are clear.

Step 2: Summarise your key findings

Next, you’ll want to summarise your key findings from your results chapter. This may look different for qualitative and quantitative research , where qualitative research may report on themes and relationships, whereas quantitative research may touch on correlations and causal relationships. Regardless of the methodology, in this section you need to highlight the overall key findings in relation to your research questions.

Typically, this section only requires one or two paragraphs , depending on how many research questions you have. Aim to be concise here, as you will unpack these findings in more detail later in the chapter. For now, a few lines that directly address your research questions are all that you need.

Some examples of the kind of language you’d use here include:

• The data suggest that…
• The data support/oppose the theory that…
• The analysis identifies…

These are purely examples. What you present here will be completely dependent on your original research questions, so make sure that you are led by them .

Step 3: Interpret your results

Once you’ve restated your research problem and research question(s) and briefly presented your key findings, you can unpack your findings by interpreting your results. Remember: only include what you reported in your results section – don’t introduce new information.

From a structural perspective, it can be a wise approach to follow a similar structure in this chapter as you did in your results chapter. This would help improve readability and make it easier for your reader to follow your arguments. For example, if you structured you results discussion by qualitative themes, it may make sense to do the same here.

Alternatively, you may structure this chapter by research questions, or based on an overarching theoretical framework that your study revolved around. Every study is different, so you’ll need to assess what structure works best for you.

When interpreting your results, you’ll want to assess how your findings compare to those of the existing research (from your literature review chapter). Even if your findings contrast with the existing research, you need to include these in your discussion. In fact, those contrasts are often the most interesting findings . In this case, you’d want to think about why you didn’t find what you were expecting in your data and what the significance of this contrast is.

Here are a few questions to help guide your discussion:

• How do your results relate with those of previous studies ?
• If you get results that differ from those of previous studies, why may this be the case?
• What do your results contribute to your field of research?
• What other explanations could there be for your findings?

When interpreting your findings, be careful not to draw conclusions that aren’t substantiated . Every claim you make needs to be backed up with evidence or findings from the data (and that data needs to be presented in the previous chapter – results). This can look different for different studies; qualitative data may require quotes as evidence, whereas quantitative data would use statistical methods and tests. Whatever the case, every claim you make needs to be strongly backed up.

Step 4: Acknowledge the limitations of your study

The fourth step in writing up your discussion chapter is to acknowledge the limitations of the study. These limitations can cover any part of your study , from the scope or theoretical basis to the analysis method(s) or sample. For example, you may find that you collected data from a very small sample with unique characteristics, which would mean that you are unable to generalise your results to the broader population.

For some students, discussing the limitations of their work can feel a little bit self-defeating . This is a misconception, as a core indicator of high-quality research is its ability to accurately identify its weaknesses. In other words, accurately stating the limitations of your work is a strength, not a weakness . All that said, be careful not to undermine your own research. Tell the reader what limitations exist and what improvements could be made, but also remind them of the value of your study despite its limitations.

Step 5: Make recommendations for implementation and future research

Now that you’ve unpacked your findings and acknowledge the limitations thereof, the next thing you’ll need to do is reflect on your study in terms of two factors:

• The practical application of your findings
• Suggestions for future research

The first thing to discuss is how your findings can be used in the real world – in other words, what contribution can they make to the field or industry? Where are these contributions applicable, how and why? For example, if your research is on communication in health settings, in what ways can your findings be applied to the context of a hospital or medical clinic? Make sure that you spell this out for your reader in practical terms, but also be realistic and make sure that any applications are feasible.

The next discussion point is the opportunity for future research . In other words, how can other studies build on what you’ve found and also improve the findings by overcoming some of the limitations in your study (which you discussed a little earlier). In doing this, you’ll want to investigate whether your results fit in with findings of previous research, and if not, why this may be the case. For example, are there any factors that you didn’t consider in your study? What future research can be done to remedy this? When you write up your suggestions, make sure that you don’t just say that more research is needed on the topic, also comment on how the research can build on your study.

Step 6: Provide a concluding summary

Finally, you’ve reached your final stretch. In this section, you’ll want to provide a brief recap of the key findings – in other words, the findings that directly address your research questions . Basically, your conclusion should tell the reader what your study has found, and what they need to take away from reading your report.

When writing up your concluding summary, bear in mind that some readers may skip straight to this section from the beginning of the chapter.  So, make sure that this section flows well from and has a strong connection to the opening section of the chapter.

Tips and tricks for an A-grade discussion chapter

Now that you know what the discussion chapter is , what to include and exclude , and how to structure it , here are some tips and suggestions to help you craft a quality discussion chapter.

• When you write up your discussion chapter, make sure that you keep it consistent with your introduction chapter , as some readers will skip from the introduction chapter directly to the discussion chapter. Your discussion should use the same tense as your introduction, and it should also make use of the same key terms.
• Don’t make assumptions about your readers. As a writer, you have hands-on experience with the data and so it can be easy to present it in an over-simplified manner. Make sure that you spell out your findings and interpretations for the intelligent layman.
• Have a look at other theses and dissertations from your institution, especially the discussion sections. This will help you to understand the standards and conventions of your university, and you’ll also get a good idea of how others have structured their discussion chapters. You can also check out our chapter template .
• Avoid using absolute terms such as “These results prove that…”, rather make use of terms such as “suggest” or “indicate”, where you could say, “These results suggest that…” or “These results indicate…”. It is highly unlikely that a dissertation or thesis will scientifically prove something (due to a variety of resource constraints), so be humble in your language.
• Use well-structured and consistently formatted headings to ensure that your reader can easily navigate between sections, and so that your chapter flows logically and coherently.

If you have any questions or thoughts regarding this post, feel free to leave a comment below. Also, if you’re looking for one-on-one help with your discussion chapter (or thesis in general), consider booking a free consultation with one of our highly experienced Grad Coaches to discuss how we can help you.

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This post was based on one of our popular Research Bootcamps . If you're working on a research project, you'll definitely want to check this out ...

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36 Comments

Thank you this is helpful!

This is very helpful to me… Thanks a lot for sharing this with us 😊

This has been very helpful indeed. Thank you.

This is actually really helpful, I just stumbled upon it. Very happy that I found it, thank you.

Me too! I was kinda lost on how to approach my discussion chapter. How helpful! Thanks a lot!

This is really good and explicit. Thanks

Thank you, this blog has been such a help.

Thank you. This is very helpful.

Dear sir/madame

Thanks a lot for this helpful blog. Really, it supported me in writing my discussion chapter while I was totally unaware about its structure and method of writing.

With regards

Syed Firoz Ahmad PhD, Research Scholar

I agree so much. This blog was god sent. It assisted me so much while I was totally clueless about the context and the know-how. Now I am fully aware of what I am to do and how I am to do it.

Thanks! This is helpful!

thanks alot for this informative website

Dear Sir/Madam,

Truly, your article was much benefited when i structured my discussion chapter.

Thank you very much!!!

This is helpful for me in writing my research discussion component. I have to copy this text on Microsoft word cause of my weakness that I cannot be able to read the text on screen a long time. So many thanks for this articles.

This was helpful

Thanks Jenna, well explained.

Thank you! This is super helpful.

Thanks very much. I have appreciated the six steps on writing the Discussion chapter which are (i) Restating the research problem and questions (ii) Summarising the key findings (iii) Interpreting the results linked to relating to previous results in positive and negative ways; explaining whay different or same and contribution to field of research and expalnation of findings (iv) Acknowledgeing limitations (v) Recommendations for implementation and future resaerch and finally (vi) Providing a conscluding summary

My two questions are: 1. On step 1 and 2 can it be the overall or you restate and sumamrise on each findings based on the reaerch question? 2. On 4 and 5 do you do the acknowlledgement , recommendations on each research finding or overall. This is not clear from your expalanattion.

Please respond.

This post is very useful. I’m wondering whether practical implications must be introduced in the Discussion section or in the Conclusion section?

Sigh, I never knew a 20 min video could have literally save my life like this. I found this at the right time!!!! Everything I need to know in one video thanks a mil ! OMGG and that 6 step!!!!!! was the cherry on top the cake!!!!!!!!!

Thanks alot.., I have gained much

This piece is very helpful on how to go about my discussion section. I can always recommend GradCoach research guides for colleagues.

Many thanks for this resource. It has been very helpful to me. I was finding it hard to even write the first sentence. Much appreciated.

Thanks so much. Very helpful to know what is included in the discussion section

this was a very helpful and useful information

This is very helpful. Very very helpful. Thanks for sharing this online!

it is very helpfull article, and i will recommend it to my fellow students. Thank you.

Superlative! More grease to your elbows.

Powerful, thank you for sharing.

Wow! Just wow! God bless the day I stumbled upon you guys’ YouTube videos! It’s been truly life changing and anxiety about my report that is due in less than a month has subsided significantly!

Simplified explanation. Well done.

The presentation is enlightening. Thank you very much.

Thanks for the support and guidance

This has been a great help to me and thank you do much

I second that “it is highly unlikely that a dissertation or thesis will scientifically prove something”; although, could you enlighten us on that comment and elaborate more please?

Sure, no problem.

Scientific proof is generally considered a very strong assertion that something is definitively and universally true. In most scientific disciplines, especially within the realms of natural and social sciences, absolute proof is very rare. Instead, researchers aim to provide evidence that supports or rejects hypotheses. This evidence increases or decreases the likelihood that a particular theory is correct, but it rarely proves something in the absolute sense.

Dissertations and theses, as substantial as they are, typically focus on exploring a specific question or problem within a larger field of study. They contribute to a broader conversation and body of knowledge. The aim is often to provide detailed insight, extend understanding, and suggest directions for further research rather than to offer definitive proof. These academic works are part of a cumulative process of knowledge building where each piece of research connects with others to gradually enhance our understanding of complex phenomena.

Furthermore, the rigorous nature of scientific inquiry involves continuous testing, validation, and potential refutation of ideas. What might be considered a “proof” at one point can later be challenged by new evidence or alternative interpretations. Therefore, the language of “proof” is cautiously used in academic circles to maintain scientific integrity and humility.

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• How to Write Discussions and Conclusions

The discussion section contains the results and outcomes of a study. An effective discussion informs readers what can be learned from your experiment and provides context for the results.

What makes an effective discussion?

When you’re ready to write your discussion, you’ve already introduced the purpose of your study and provided an in-depth description of the methodology. The discussion informs readers about the larger implications of your study based on the results. Highlighting these implications while not overstating the findings can be challenging, especially when you’re submitting to a journal that selects articles based on novelty or potential impact. Regardless of what journal you are submitting to, the discussion section always serves the same purpose: concluding what your study results actually mean.

A successful discussion section puts your findings in context. It should include:

• the results of your research,
• a discussion of related research, and
• a comparison between your results and initial hypothesis.

Tip: Not all journals share the same naming conventions.

You can apply the advice in this article to the conclusion, results or discussion sections of your manuscript.

Our Early Career Researcher community tells us that the conclusion is often considered the most difficult aspect of a manuscript to write. To help, this guide provides questions to ask yourself, a basic structure to model your discussion off of and examples from published manuscripts. 

Questions to ask yourself:

• Was my hypothesis correct?
• If my hypothesis is partially correct or entirely different, what can be learned from the results? 
• How do the conclusions reshape or add onto the existing knowledge in the field? What does previous research say about the topic? 
• Why are the results important or relevant to your audience? Do they add further evidence to a scientific consensus or disprove prior studies? 
• How can future research build on these observations? What are the key experiments that must be done? 
• What is the “take-home” message you want your reader to leave with?

How to structure a discussion

Trying to fit a complete discussion into a single paragraph can add unnecessary stress to the writing process. If possible, you’ll want to give yourself two or three paragraphs to give the reader a comprehensive understanding of your study as a whole. Here’s one way to structure an effective discussion:

Writing Tips

While the above sections can help you brainstorm and structure your discussion, there are many common mistakes that writers revert to when having difficulties with their paper. Writing a discussion can be a delicate balance between summarizing your results, providing proper context for your research and avoiding introducing new information. Remember that your paper should be both confident and honest about the results! 

• Read the journal’s guidelines on the discussion and conclusion sections. If possible, learn about the guidelines before writing the discussion to ensure you’re writing to meet their expectations. 
• Begin with a clear statement of the principal findings. This will reinforce the main take-away for the reader and set up the rest of the discussion. 
• Explain why the outcomes of your study are important to the reader. Discuss the implications of your findings realistically based on previous literature, highlighting both the strengths and limitations of the research. 
• State whether the results prove or disprove your hypothesis. If your hypothesis was disproved, what might be the reasons? 
• Introduce new or expanded ways to think about the research question. Indicate what next steps can be taken to further pursue any unresolved questions. 
• If dealing with a contemporary or ongoing problem, such as climate change, discuss possible consequences if the problem is avoided. 
• Be concise. Adding unnecessary detail can distract from the main findings. 

Don’t

• Rewrite your abstract. Statements with “we investigated” or “we studied” generally do not belong in the discussion. 
• Include new arguments or evidence not previously discussed. Necessary information and evidence should be introduced in the main body of the paper. 
• Apologize. Even if your research contains significant limitations, don’t undermine your authority by including statements that doubt your methodology or execution. 
• Shy away from speaking on limitations or negative results. Including limitations and negative results will give readers a complete understanding of the presented research. Potential limitations include sources of potential bias, threats to internal or external validity, barriers to implementing an intervention and other issues inherent to the study design. 
• Overstate the importance of your findings. Making grand statements about how a study will fully resolve large questions can lead readers to doubt the success of the research. 

Snippets of Effective Discussions:

Consumer-based actions to reduce plastic pollution in rivers: A multi-criteria decision analysis approach

Identifying reliable indicators of fitness in polar bears

• How to Write a Great Title
• How to Write an Abstract
• How to Write Your Methods
• How to Report Statistics
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Thank you. payment completed., you will receive an email from us to confirm your registration, please click the link in the email to activate your account., there was error during payment, orcid profile found in public registry, download history, how to write the analysis and discussion chapters in qualitative (ssah) research.

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While it is more common for Science, Technology, Engineering and Mathematics (STEM) researchers to write separate, distinct chapters for their data/ results and analysis/ discussion , the same sections can feel less clearly defined for a researcher in Social Sciences, Arts and Humanities (SSAH). This article will look specifically at some useful approaches to writing the analysis and discussion chapters in qualitative/SSAH research.

Note : Most of the differences in approaches to research, writing, analysis and discussion come down, ultimately, to differences in epistemology – how we approach, create and work with knowledge in our respective fields. However, this is a vast topic that deserves a separate discussion.

Look for emerging themes and patterns

The ‘results’ of qualitative research can sometimes be harder to pinpoint than in quantitative research. You’re not dealing with definitive numbers and results in the same way as, say, a scientist conducting experiments that produce measurable data. Instead, most qualitative researchers explore prominent, interesting themes and patterns emerging from their data – that could comprise interviews, textual material or participant observation, for example. 

You may find that your data presents a huge number of themes, issues and topics, all of which you might find equally significant and interesting. In fact, you might find yourself overwhelmed by the many directions that your research could take, depending on which themes you choose to study in further depth. You may even discover issues and patterns that you had not expected , that may necessitate having to change or expand the research focus you initially started off with.

It is crucial at this point not to panic. Instead, try to enjoy the many possibilities that your data is offering you. It can be useful to remind yourself at each stage of exactly what you are trying to find out through this research.

What exactly do you want to know? What knowledge do you want to generate and share within your field?

Then, spend some time reflecting upon each of the themes that seem most interesting and significant, and consider whether they are immediately relevant to your main, overarching research objectives and goals.

Suggestion: Don’t worry too much about structure and flow at the early stages of writing your discussion . It would be a more valuable use of your time to fully explore the themes and issues arising from your data first, while also reading widely alongside your writing (more on this below). As you work more intimately with the data and develop your ideas, the overarching narrative and connections between those ideas will begin to emerge. Trust that you’ll be able to draw those links and craft the structure organically as you write.

Let your data guide you

A key characteristic of qualitative research is that the researchers allow their data to ‘speak’ and guide their research and their writing. Instead of insisting too strongly upon the prominence of specific themes and issues and imposing their opinions and beliefs upon the data, a good qualitative researcher ‘listens’ to what the data has to tell them.

Again, you might find yourself having to address unexpected issues or your data may reveal things that seem completely contradictory to the ideas and theories you have worked with so far. Although this might seem worrying, discovering these unexpected new elements can actually make your research much richer and more interesting. 

Suggestion: Allow yourself to follow those leads and ask new questions as you work through your data. These new directions could help you to answer your research questions in more depth and with greater complexity; or they could even open up other avenues for further study, either in this or future research.

Work closely with the literature

As you analyse and discuss the prominent themes, arguments and findings arising from your data, it is very helpful to maintain a regular and consistent reading practice alongside your writing. Return to the literature that you’ve already been reading so far or begin to check out new texts, studies and theories that might be more appropriate for working with any new ideas and themes arising from your data.

Reading and incorporating relevant literature into your writing as you work through your analysis and discussion will help you to consistently contextualise your research within the larger body of knowledge. It will be easier to stay focused on what you are trying to say through your research if you can simultaneously show what has already been said on the subject and how your research and data supports, challenges or extends those debates. By drawing from existing literature , you are setting up a dialogue between your research and prior work, and highlighting what this research has to add to the conversation.

Suggestion : Although it might sometimes feel tedious to have to blend others’ writing in with yours, this is ultimately the best way to showcase the specialness of your own data, findings and research . Remember that it is more difficult to highlight the significance and relevance of your original work without first showing how that work fits into or responds to existing studies. 

In conclusion

The discussion chapters form the heart of your thesis and this is where your unique contribution comes to the forefront. This is where your data takes centre-stage and where you get to showcase your original arguments, perspectives and knowledge. To do this effectively needs you to explore the original themes and issues arising from and within the data, while simultaneously contextualising these findings within the larger, existing body of knowledge of your specialising field. By striking this balance, you prove the two most important qualities of excellent qualitative research : keen awareness of your field and a firm understanding of your place in it.

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Writing the Dissertation - Guides for Success: The Results and Discussion

• Writing the Dissertation Homepage
• Overview and Planning
• The Literature Review
• The Methodology
• The Results and Discussion
• The Conclusion
• The Abstract
• The Difference
• What to Avoid

Overview of writing the results and discussion

The results and discussion follow on from the methods or methodology chapter of the dissertation. This creates a natural transition from how you designed your study, to what your study reveals, highlighting your own contribution to the research area.

Disciplinary differences

Please note: this guide is not specific to any one discipline. The results and discussion can vary depending on the nature of the research and the expectations of the school or department, so please adapt the following advice to meet the demands of your project and department. Consult your supervisor for further guidance; you can also peruse our  Writing Across Subjects guide .

Guide contents

As part of the Writing the Dissertation series, this guide covers the most common conventions of the results and discussion chapters, giving you the necessary knowledge, tips and guidance needed to impress your markers! The sections are organised as follows:

• The Difference  - Breaks down the distinctions between the results and discussion chapters.
• Results  - Provides a walk-through of common characteristics of the results chapter.
• Discussion - Provides a walk-through of how to approach writing your discussion chapter, including structure.
• What to Avoid  - Covers a few frequent mistakes you'll want to...avoid!
• FAQs  - Guidance on first- vs. third-person, limitations and more.
• Checklist  - Includes a summary of key points and a self-evaluation checklist.

Training and tools

• The Academic Skills team has recorded a Writing the Dissertation workshop series to help you with each section of a standard dissertation, including a video on writing the results and discussion   (embedded below).
• The dissertation planner tool can help you think through the timeline for planning, research, drafting and editing.
• iSolutions offers training and a Word template to help you digitally format and structure your dissertation.

Introduction

The results of your study are often followed by a separate chapter of discussion. This is certainly the case with scientific writing. Some dissertations, however, might incorporate both the results and discussion in one chapter. This depends on the nature of your dissertation and the conventions within your school or department. Always follow the guidelines given to you and ask your supervisor for further guidance.

As part of the Writing the Dissertation series, this guide covers the essentials of writing your results and discussion, giving you the necesary knowledge, tips and guidance needed to leave a positive impression on your markers! This guide covers the results and discussion as separate – although interrelated – chapters, as you'll see in the next two tabs. However, you can easily adapt the guidance to suit one single chapter – keep an eye out for some hints on how to do this throughout the guide.

Results or discussion - what's the difference?

To understand what the results and discussion sections are about, we need to clearly define the difference between the two.

The results should provide a clear account of the findings . This is written in a dry and direct manner, simply highlighting the findings as they appear once processed. It’s expected to have tables and graphics, where relevant, to contextualise and illustrate the data.

Rather than simply stating the findings of the study, the discussion interprets the findings  to offer a more nuanced understanding of the research. The discussion is similar to the second half of the conclusion because it’s where you consider and formulate a response to the question, ‘what do we now know that we didn’t before?’ (see our Writing the Conclusion   guide for more). The discussion achieves this by answering the research questions and responding to any hypotheses proposed. With this in mind, the discussion should be the most insightful chapter or section of your dissertation because it provides the most original insight.

Across the next two tabs of this guide, we will look at the results and discussion chapters separately in more detail.

Writing the results

The results chapter should provide a direct and factual account of the data collected without any interpretation or interrogation of the findings. As this might suggest, the results chapter can be slightly monotonous, particularly for quantitative data. Nevertheless, it’s crucial that you present your results in a clear and direct manner as it provides the necessary detail for your subsequent discussion.

Note: If you’re writing your results and discussion as one chapter, then you can either:

1) write them as distinctly separate sections in the same chapter, with the discussion following on from the results, or...

2) integrate the two throughout by presenting a subset of the results and then discussing that subset in further detail.

Next, we'll explore some of the most important factors to consider when writing your results chapter.

How you structure your results chapter depends on the design and purpose of your study. Here are some possible options for structuring your results chapter (adapted from Glatthorn and Joyner, 2005):

• Chronological – depending on the nature of the study, it might be important to present your results in order of how you collected the data, such as a pretest-posttest design.
• Research method – if you’ve used a mixed-methods approach, you could isolate each research method and instrument employed in the study.
• Research question and/or hypotheses – you could structure your results around your research questions and/or hypotheses, providing you have more than one. However, keep in mind that the results on their own don’t necessarily answer the questions or respond to the hypotheses in a definitive manner. You need to interpret the findings in the discussion chapter to gain a more rounded understanding.
• Variable – you could isolate each variable in your study (where relevant) and specify how and whether the results changed.

Tables and figures

For your results, you are expected to convert your data into tables and figures, particularly when dealing with quantitative data. Making use of tables and figures is a way of contextualising your results within the study. It also helps to visually reinforce your written account of the data. However, make sure you’re only using tables and figures to supplement , rather than replace, your written account of the results (see the 'What to avoid' tab for more on this).

Figures and tables need to be numbered in order of when they appear in the dissertation, and they should be capitalised. You also need to make direct reference to them in the text, which you can do (with some variation) in one of the following ways:

Figure 1 shows…

The results of the test (see Figure 1) demonstrate…

The actual figures and tables themselves also need to be accompanied by a caption that briefly outlines what is displayed. For example:

Table 1. Variables of the regression model

Table captions normally appear above the table, whilst figures or other such graphical forms appear below, although it’s worth confirming this with your supervisor as the formatting can change depending on the school or discipline. The style guide used for writing in your subject area (e.g., Harvard, MLA, APA, OSCOLA) often dictates correct formatting of tables, graphs and figures, so have a look at your style guide for additional support.

Using quotations

If your qualitative data comes from interviews and focus groups, your data will largely consist of quotations from participants. When presenting this data, you should identify and group the most common and interesting responses and then quote two or three relevant examples to illustrate this point. Here’s a brief example from a qualitative study on the habits of online food shoppers:

Regardless of whether or not participants regularly engage in online food shopping, all but two respondents commented, in some form, on the convenience of online food shopping:

"It’s about convenience for me. I’m at work all week and the weekend doesn’t allow much time for food shopping, so knowing it can be ordered and then delivered in 24 hours is great for me” (Participant A).

"It fits around my schedule, which is important for me and my family” (Participant D).

"In the past, I’ve always gone food shopping after work, which has always been a hassle. Online food shopping, however, frees up some of my time” (Participant E).

As shown in this example, each quotation is attributed to a particular participant, although their anonymity is protected. The details used to identify participants can depend on the relevance of certain factors to the research. For instance, age or gender could be included.

Writing the discussion

The discussion chapter is where “you critically examine your own results in the light of the previous state of the subject as outlined in the background, and make judgments as to what has been learnt in your work” (Evans et al., 2014: 12). Whilst the results chapter is strictly factual, reporting on the data on a surface level, the discussion is rooted in analysis and interpretation , allowing you and your reader to delve beneath the surface.

Next, we will review some of the most important factors to consider when writing your discussion chapter.

Like the results, there is no single way to structure your discussion chapter. As always, it depends on the nature of your dissertation and whether you’re dealing with qualitative, quantitative or mixed-methods research. It’s good to be consistent with the results chapter, so you could structure your discussion chapter, where possible, in the same way as your results.

When it comes to structure, it’s particularly important that you guide your reader through the various points, subtopics or themes of your discussion. You should do this by structuring sections of your discussion, which might incorporate three or four paragraphs around the same theme or issue, in a three-part way that mirrors the typical three-part essay structure of introduction, main body and conclusion.

Figure 1: The three-part cycle that embodies a typical essay structure and reflects how you structure themes or subtopics in your discussion.

This is your topic sentence where you clearly state the focus of this paragraph/section. It’s often a fairly short, declarative statement in order to grab the reader’s attention, and it should be clearly related to your research purpose, such as responding to a research question.

This constitutes your analysis where you explore the theme or focus, outlined in the topic sentence, in further detail by interrogating why this particular theme or finding emerged and the significance of this data. This is also where you bring in the relevant secondary literature.

This is the evaluative stage of the cycle where you explicitly return back to the topic sentence and tell the reader what this means in terms of answering the relevant research question and establishing new knowledge. It could be a single sentence, or a short paragraph, and it doesn’t strictly need to appear at the end of every section or theme. Instead, some prefer to bring the main themes together towards the end of the discussion in a single paragraph or two. Either way, it’s imperative that you evaluate the significance of your discussion and tell the reader what this means.

A note on the three-part structure

This is often how you’re taught to construct a paragraph, but the themes and ideas you engage with at dissertation level are going to extend beyond the confines of a short paragraph. Therefore, this is a structure to guide how you write about particular themes or patterns in your discussion. Think of this structure like a cycle that you can engage in its smallest form to shape a paragraph; in a slightly larger form to shape a subsection of a chapter; and in its largest form to shape the entire chapter. You can 'level up' the same basic structure to accommodate a deeper breadth of thinking and critical engagement.

Using secondary literature

Your discussion chapter should return to the relevant literature (previously identified in your literature review ) in order to contextualise and deepen your reader’s understanding of the findings. This might help to strengthen your findings, or you might find contradictory evidence that serves to counter your results. In the case of the latter, it’s important that you consider why this might be and the implications for this. It’s through your incorporation of secondary literature that you can consider the question, ‘What do we now know that we didn’t before?’

Limitations

You may have included a limitations section in your methodology chapter (see our Writing the Methodology guide ), but it’s also common to have one in your discussion chapter. The difference here is that your limitations are directly associated with your results and the capacity to interpret and analyse those results.

Think of it this way: the limitations in your methodology refer to the issues identified before conducting the research, whilst the limitations in your discussion refer to the issues that emerged after conducting the research. For example, you might only be able to identify a limitation about the external validity or generalisability of your research once you have processed and analysed the data. Try not to overstress the limitations of your work – doing so can undermine the work you’ve done – and try to contextualise them, perhaps by relating them to certain limitations of other studies.

Recommendations

It’s often good to follow your limitations with some recommendations for future research. This creates a neat linearity from what didn’t work, or what could be improved, to how other researchers could address these issues in the future. This helps to reposition your limitations in a positive way by offering an action-oriented response. Try to limit the amount of recommendations you discuss – too many can bring the end of your discussion to a rather negative end as you’re ultimately focusing on what should be done, rather than what you have done. You also don’t need to repeat the recommendations in your conclusion if you’ve included them here.

What to avoid

This portion of the guide will cover some common missteps you should try to avoid in writing your results and discussion.

Over-reliance on tables and figures

It’s very common to produce visual representations of data, such as graphs and tables, and to use these representations in your results chapter. However, the use of these figures should not entirely replace your written account of the data. You don’t need to specify every detail in the data set, but you should provide some written account of what the data shows, drawing your reader’s attention to the most important elements of the data. The figures should support your account and help to contextualise your results. Simply stating, ‘look at Table 1’, without any further detail is not sufficient. Writers often try to do this as a way of saving words, but your markers will know!

Ignoring unexpected or contradictory data

Research can be a complex process with ups and downs, surprises and anomalies. Don’t be tempted to ignore any data that doesn’t meet your expectations, or that perhaps you’re struggling to explain. Failing to report on data for these, and other such reasons, is a problem because it undermines your credibility as a researcher, which inevitably undermines your research in the process. You have to do your best to provide some reason to such data. For instance, there might be some methodological reason behind a particular trend in the data.

Including raw data

You don’t need to include any raw data in your results chapter – raw data meaning unprocessed data that hasn’t undergone any calculations or other such refinement. This can overwhelm your reader and obscure the clarity of the research. You can include raw data in an appendix, providing you feel it’s necessary.

Presenting new results in the discussion

You shouldn’t be stating original findings for the first time in the discussion chapter. The findings of your study should first appear in your results before elaborating on them in the discussion.

Overstressing the significance of your research

It’s important that you clarify what your research demonstrates so you can highlight your own contribution to the research field. However, don’t overstress or inflate the significance of your results. It’s always difficult to provide definitive answers in academic research, especially with qualitative data. You should be confident and authoritative where possible, but don’t claim to reach the absolute truth when perhaps other conclusions could be reached. Where necessary, you should use hedging (see definition) to slightly soften the tone and register of your language.

Definition: Hedging refers to 'the act of expressing your attitude or ideas in tentative or cautious ways' (Singh and Lukkarila, 2017: 101). It’s mostly achieved through a number of verbs or adverbs, such as ‘suggest’ or ‘seemingly.’

Q: What’s the difference between the results and discussion?

A: The results chapter is a factual account of the data collected, whilst the discussion considers the implications of these findings by relating them to relevant literature and answering your research question(s). See the tab 'The Differences' in this guide for more detail.

Q: Should the discussion include recommendations for future research?

A: Your dissertation should include some recommendations for future research, but it can vary where it appears. Recommendations are often featured towards the end of the discussion chapter, but they also regularly appear in the conclusion chapter (see our Writing the Conclusion guide   for more). It simply depends on your dissertation and the conventions of your school or department. It’s worth consulting any specific guidance that you’ve been given, or asking your supervisor directly.

Q: Should the discussion include the limitations of the study?

A: Like the answer above, you should engage with the limitations of your study, but it might appear in the discussion of some dissertations, or the conclusion of others. Consider the narrative flow and whether it makes sense to include the limitations in your discussion chapter, or your conclusion. You should also consult any discipline-specific guidance you’ve been given, or ask your supervisor for more. Be mindful that this is slightly different to the limitations outlined in the methodology or methods chapter (see our Writing the Methodology guide vs. the 'Discussion' tab of this guide).

Q: Should the results and discussion be in the first-person or third?

A: It’s important to be consistent , so you should use whatever you’ve been using throughout your dissertation. Third-person is more commonly accepted, but certain disciplines are happy with the use of first-person. Just remember that the first-person pronoun can be a distracting, but powerful device, so use it sparingly. Consult your lecturer for discipline-specific guidance.

Q: Is there a difference between the discussion and the conclusion of a dissertation?

A: Yes, there is a difference. The discussion chapter is a detailed consideration of how your findings answer your research questions. This includes the use of secondary literature to help contextualise your discussion. Rather than considering the findings in detail, the conclusion briefly summarises and synthesises the main findings of your study before bringing the dissertation to a close. Both are similar, particularly in the way they ‘broaden out’ to consider the wider implications of the research. They are, however, their own distinct chapters, unless otherwise stated by your supervisor.

The results and discussion chapters (or chapter) constitute a large part of your dissertation as it’s here where your original contribution is foregrounded and discussed in detail. Remember, the results chapter simply reports on the data collected, whilst the discussion is where you consider your research questions and/or hypothesis in more detail by interpreting and interrogating the data. You can integrate both into a single chapter and weave the interpretation of your findings throughout the chapter, although it’s common for both the results and discussion to appear as separate chapters. Consult your supervisor for further guidance.

Here’s a final checklist for writing your results and discussion. Remember that not all of these points will be relevant for you, so make sure you cover whatever’s appropriate for your dissertation. The asterisk (*) indicates any content that might not be relevant for your dissertation. To download a copy of the checklist to save and edit, please use the Word document, below.

• Results and discussion self-evaluation checklist

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Home » Research Results Section – Writing Guide and Examples

Research Results Section – Writing Guide and Examples

Table of Contents

Research Results

Research results refer to the findings and conclusions derived from a systematic investigation or study conducted to answer a specific question or hypothesis. These results are typically presented in a written report or paper and can include various forms of data such as numerical data, qualitative data, statistics, charts, graphs, and visual aids.

Results Section in Research

The results section of the research paper presents the findings of the study. It is the part of the paper where the researcher reports the data collected during the study and analyzes it to draw conclusions.

In the results section, the researcher should describe the data that was collected, the statistical analysis performed, and the findings of the study. It is important to be objective and not interpret the data in this section. Instead, the researcher should report the data as accurately and objectively as possible.

Structure of Research Results Section

The structure of the research results section can vary depending on the type of research conducted, but in general, it should contain the following components:

• Introduction: The introduction should provide an overview of the study, its aims, and its research questions. It should also briefly explain the methodology used to conduct the study.
• Data presentation : This section presents the data collected during the study. It may include tables, graphs, or other visual aids to help readers better understand the data. The data presented should be organized in a logical and coherent way, with headings and subheadings used to help guide the reader.
• Data analysis: In this section, the data presented in the previous section are analyzed and interpreted. The statistical tests used to analyze the data should be clearly explained, and the results of the tests should be presented in a way that is easy to understand.
• Discussion of results : This section should provide an interpretation of the results of the study, including a discussion of any unexpected findings. The discussion should also address the study’s research questions and explain how the results contribute to the field of study.
• Limitations: This section should acknowledge any limitations of the study, such as sample size, data collection methods, or other factors that may have influenced the results.
• Conclusions: The conclusions should summarize the main findings of the study and provide a final interpretation of the results. The conclusions should also address the study’s research questions and explain how the results contribute to the field of study.
• Recommendations : This section may provide recommendations for future research based on the study’s findings. It may also suggest practical applications for the study’s results in real-world settings.

Outline of Research Results Section

The following is an outline of the key components typically included in the Results section:

I. Introduction

• A brief overview of the research objectives and hypotheses
• A statement of the research question

II. Descriptive statistics

• Summary statistics (e.g., mean, standard deviation) for each variable analyzed
• Frequencies and percentages for categorical variables

III. Inferential statistics

• Results of statistical analyses, including tests of hypotheses
• Tables or figures to display statistical results

IV. Effect sizes and confidence intervals

• Effect sizes (e.g., Cohen’s d, odds ratio) to quantify the strength of the relationship between variables
• Confidence intervals to estimate the range of plausible values for the effect size

V. Subgroup analyses

• Results of analyses that examined differences between subgroups (e.g., by gender, age, treatment group)

VI. Limitations and assumptions

• Discussion of any limitations of the study and potential sources of bias
• Assumptions made in the statistical analyses

VII. Conclusions

• A summary of the key findings and their implications
• A statement of whether the hypotheses were supported or not
• Suggestions for future research

Example of Research Results Section

An Example of a Research Results Section could be:

• This study sought to examine the relationship between sleep quality and academic performance in college students.
• Hypothesis : College students who report better sleep quality will have higher GPAs than those who report poor sleep quality.
• Methodology : Participants completed a survey about their sleep habits and academic performance.

II. Participants

• Participants were college students (N=200) from a mid-sized public university in the United States.
• The sample was evenly split by gender (50% female, 50% male) and predominantly white (85%).
• Participants were recruited through flyers and online advertisements.

III. Results

• Participants who reported better sleep quality had significantly higher GPAs (M=3.5, SD=0.5) than those who reported poor sleep quality (M=2.9, SD=0.6).
• See Table 1 for a summary of the results.
• Participants who reported consistent sleep schedules had higher GPAs than those with irregular sleep schedules.

IV. Discussion

• The results support the hypothesis that better sleep quality is associated with higher academic performance in college students.
• These findings have implications for college students, as prioritizing sleep could lead to better academic outcomes.
• Limitations of the study include self-reported data and the lack of control for other variables that could impact academic performance.

V. Conclusion

• College students who prioritize sleep may see a positive impact on their academic performance.
• These findings highlight the importance of sleep in academic success.
• Future research could explore interventions to improve sleep quality in college students.

Example of Research Results in Research Paper :

Our study aimed to compare the performance of three different machine learning algorithms (Random Forest, Support Vector Machine, and Neural Network) in predicting customer churn in a telecommunications company. We collected a dataset of 10,000 customer records, with 20 predictor variables and a binary churn outcome variable.

Our analysis revealed that all three algorithms performed well in predicting customer churn, with an overall accuracy of 85%. However, the Random Forest algorithm showed the highest accuracy (88%), followed by the Support Vector Machine (86%) and the Neural Network (84%).

Furthermore, we found that the most important predictor variables for customer churn were monthly charges, contract type, and tenure. Random Forest identified monthly charges as the most important variable, while Support Vector Machine and Neural Network identified contract type as the most important.

Overall, our results suggest that machine learning algorithms can be effective in predicting customer churn in a telecommunications company, and that Random Forest is the most accurate algorithm for this task.

Example 3 :

Title : The Impact of Social Media on Body Image and Self-Esteem

Abstract : This study aimed to investigate the relationship between social media use, body image, and self-esteem among young adults. A total of 200 participants were recruited from a university and completed self-report measures of social media use, body image satisfaction, and self-esteem.

Results: The results showed that social media use was significantly associated with body image dissatisfaction and lower self-esteem. Specifically, participants who reported spending more time on social media platforms had lower levels of body image satisfaction and self-esteem compared to those who reported less social media use. Moreover, the study found that comparing oneself to others on social media was a significant predictor of body image dissatisfaction and lower self-esteem.

Conclusion : These results suggest that social media use can have negative effects on body image satisfaction and self-esteem among young adults. It is important for individuals to be mindful of their social media use and to recognize the potential negative impact it can have on their mental health. Furthermore, interventions aimed at promoting positive body image and self-esteem should take into account the role of social media in shaping these attitudes and behaviors.

Importance of Research Results

Research results are important for several reasons, including:

• Advancing knowledge: Research results can contribute to the advancement of knowledge in a particular field, whether it be in science, technology, medicine, social sciences, or humanities.
• Developing theories: Research results can help to develop or modify existing theories and create new ones.
• Improving practices: Research results can inform and improve practices in various fields, such as education, healthcare, business, and public policy.
• Identifying problems and solutions: Research results can identify problems and provide solutions to complex issues in society, including issues related to health, environment, social justice, and economics.
• Validating claims : Research results can validate or refute claims made by individuals or groups in society, such as politicians, corporations, or activists.
• Providing evidence: Research results can provide evidence to support decision-making, policy-making, and resource allocation in various fields.

How to Write Results in A Research Paper

Here are some general guidelines on how to write results in a research paper:

• Organize the results section: Start by organizing the results section in a logical and coherent manner. Divide the section into subsections if necessary, based on the research questions or hypotheses.
• Present the findings: Present the findings in a clear and concise manner. Use tables, graphs, and figures to illustrate the data and make the presentation more engaging.
• Describe the data: Describe the data in detail, including the sample size, response rate, and any missing data. Provide relevant descriptive statistics such as means, standard deviations, and ranges.
• Interpret the findings: Interpret the findings in light of the research questions or hypotheses. Discuss the implications of the findings and the extent to which they support or contradict existing theories or previous research.
• Discuss the limitations : Discuss the limitations of the study, including any potential sources of bias or confounding factors that may have affected the results.
• Compare the results : Compare the results with those of previous studies or theoretical predictions. Discuss any similarities, differences, or inconsistencies.
• Avoid redundancy: Avoid repeating information that has already been presented in the introduction or methods sections. Instead, focus on presenting new and relevant information.
• Be objective: Be objective in presenting the results, avoiding any personal biases or interpretations.

When to Write Research Results

Here are situations When to Write Research Results”

• After conducting research on the chosen topic and obtaining relevant data, organize the findings in a structured format that accurately represents the information gathered.
• Once the data has been analyzed and interpreted, and conclusions have been drawn, begin the writing process.
• Before starting to write, ensure that the research results adhere to the guidelines and requirements of the intended audience, such as a scientific journal or academic conference.
• Begin by writing an abstract that briefly summarizes the research question, methodology, findings, and conclusions.
• Follow the abstract with an introduction that provides context for the research, explains its significance, and outlines the research question and objectives.
• The next section should be a literature review that provides an overview of existing research on the topic and highlights the gaps in knowledge that the current research seeks to address.
• The methodology section should provide a detailed explanation of the research design, including the sample size, data collection methods, and analytical techniques used.
• Present the research results in a clear and concise manner, using graphs, tables, and figures to illustrate the findings.
• Discuss the implications of the research results, including how they contribute to the existing body of knowledge on the topic and what further research is needed.
• Conclude the paper by summarizing the main findings, reiterating the significance of the research, and offering suggestions for future research.

Purpose of Research Results

The purposes of Research Results are as follows:

• Informing policy and practice: Research results can provide evidence-based information to inform policy decisions, such as in the fields of healthcare, education, and environmental regulation. They can also inform best practices in fields such as business, engineering, and social work.
• Addressing societal problems : Research results can be used to help address societal problems, such as reducing poverty, improving public health, and promoting social justice.
• Generating economic benefits : Research results can lead to the development of new products, services, and technologies that can create economic value and improve quality of life.
• Supporting academic and professional development : Research results can be used to support academic and professional development by providing opportunities for students, researchers, and practitioners to learn about new findings and methodologies in their field.
• Enhancing public understanding: Research results can help to educate the public about important issues and promote scientific literacy, leading to more informed decision-making and better public policy.
• Evaluating interventions: Research results can be used to evaluate the effectiveness of interventions, such as treatments, educational programs, and social policies. This can help to identify areas where improvements are needed and guide future interventions.
• Contributing to scientific progress: Research results can contribute to the advancement of science by providing new insights and discoveries that can lead to new theories, methods, and techniques.
• Informing decision-making : Research results can provide decision-makers with the information they need to make informed decisions. This can include decision-making at the individual, organizational, or governmental levels.
• Fostering collaboration : Research results can facilitate collaboration between researchers and practitioners, leading to new partnerships, interdisciplinary approaches, and innovative solutions to complex problems.

Advantages of Research Results

Some Advantages of Research Results are as follows:

• Improved decision-making: Research results can help inform decision-making in various fields, including medicine, business, and government. For example, research on the effectiveness of different treatments for a particular disease can help doctors make informed decisions about the best course of treatment for their patients.
• Innovation : Research results can lead to the development of new technologies, products, and services. For example, research on renewable energy sources can lead to the development of new and more efficient ways to harness renewable energy.
• Economic benefits: Research results can stimulate economic growth by providing new opportunities for businesses and entrepreneurs. For example, research on new materials or manufacturing techniques can lead to the development of new products and processes that can create new jobs and boost economic activity.
• Improved quality of life: Research results can contribute to improving the quality of life for individuals and society as a whole. For example, research on the causes of a particular disease can lead to the development of new treatments and cures, improving the health and well-being of millions of people.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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• Am J Pharm Educ
• v.74(8); 2010 Oct 11

Presenting and Evaluating Qualitative Research

The purpose of this paper is to help authors to think about ways to present qualitative research papers in the American Journal of Pharmaceutical Education . It also discusses methods for reviewers to assess the rigour, quality, and usefulness of qualitative research. Examples of different ways to present data from interviews, observations, and focus groups are included. The paper concludes with guidance for publishing qualitative research and a checklist for authors and reviewers.

INTRODUCTION

Policy and practice decisions, including those in education, increasingly are informed by findings from qualitative as well as quantitative research. Qualitative research is useful to policymakers because it often describes the settings in which policies will be implemented. Qualitative research is also useful to both pharmacy practitioners and pharmacy academics who are involved in researching educational issues in both universities and practice and in developing teaching and learning.

Qualitative research involves the collection, analysis, and interpretation of data that are not easily reduced to numbers. These data relate to the social world and the concepts and behaviors of people within it. Qualitative research can be found in all social sciences and in the applied fields that derive from them, for example, research in health services, nursing, and pharmacy. 1 It looks at X in terms of how X varies in different circumstances rather than how big is X or how many Xs are there? 2 Textbooks often subdivide research into qualitative and quantitative approaches, furthering the common assumption that there are fundamental differences between the 2 approaches. With pharmacy educators who have been trained in the natural and clinical sciences, there is often a tendency to embrace quantitative research, perhaps due to familiarity. A growing consensus is emerging that sees both qualitative and quantitative approaches as useful to answering research questions and understanding the world. Increasingly mixed methods research is being carried out where the researcher explicitly combines the quantitative and qualitative aspects of the study. 3 , 4

Like healthcare, education involves complex human interactions that can rarely be studied or explained in simple terms. Complex educational situations demand complex understanding; thus, the scope of educational research can be extended by the use of qualitative methods. Qualitative research can sometimes provide a better understanding of the nature of educational problems and thus add to insights into teaching and learning in a number of contexts. For example, at the University of Nottingham, we conducted in-depth interviews with pharmacists to determine their perceptions of continuing professional development and who had influenced their learning. We also have used a case study approach using observation of practice and in-depth interviews to explore physiotherapists' views of influences on their leaning in practice. We have conducted in-depth interviews with a variety of stakeholders in Malawi, Africa, to explore the issues surrounding pharmacy academic capacity building. A colleague has interviewed and conducted focus groups with students to explore cultural issues as part of a joint Nottingham-Malaysia pharmacy degree program. Another colleague has interviewed pharmacists and patients regarding their expectations before and after clinic appointments and then observed pharmacist-patient communication in clinics and assessed it using the Calgary Cambridge model in order to develop recommendations for communication skills training. 5 We have also performed documentary analysis on curriculum data to compare pharmacist and nurse supplementary prescribing courses in the United Kingdom.

It is important to choose the most appropriate methods for what is being investigated. Qualitative research is not appropriate to answer every research question and researchers need to think carefully about their objectives. Do they wish to study a particular phenomenon in depth (eg, students' perceptions of studying in a different culture)? Or are they more interested in making standardized comparisons and accounting for variance (eg, examining differences in examination grades after changing the way the content of a module is taught). Clearly a quantitative approach would be more appropriate in the last example. As with any research project, a clear research objective has to be identified to know which methods should be applied.

Types of qualitative data include:

• Audio recordings and transcripts from in-depth or semi-structured interviews
• Structured interview questionnaires containing substantial open comments including a substantial number of responses to open comment items.
• Audio recordings and transcripts from focus group sessions.
• Field notes (notes taken by the researcher while in the field [setting] being studied)
• Video recordings (eg, lecture delivery, class assignments, laboratory performance)
• Case study notes
• Documents (reports, meeting minutes, e-mails)
• Diaries, video diaries
• Observation notes
• Press clippings
• Photographs

RIGOUR IN QUALITATIVE RESEARCH

Qualitative research is often criticized as biased, small scale, anecdotal, and/or lacking rigor; however, when it is carried out properly it is unbiased, in depth, valid, reliable, credible and rigorous. In qualitative research, there needs to be a way of assessing the “extent to which claims are supported by convincing evidence.” 1 Although the terms reliability and validity traditionally have been associated with quantitative research, increasingly they are being seen as important concepts in qualitative research as well. Examining the data for reliability and validity assesses both the objectivity and credibility of the research. Validity relates to the honesty and genuineness of the research data, while reliability relates to the reproducibility and stability of the data.

The validity of research findings refers to the extent to which the findings are an accurate representation of the phenomena they are intended to represent. The reliability of a study refers to the reproducibility of the findings. Validity can be substantiated by a number of techniques including triangulation use of contradictory evidence, respondent validation, and constant comparison. Triangulation is using 2 or more methods to study the same phenomenon. Contradictory evidence, often known as deviant cases, must be sought out, examined, and accounted for in the analysis to ensure that researcher bias does not interfere with or alter their perception of the data and any insights offered. Respondent validation, which is allowing participants to read through the data and analyses and provide feedback on the researchers' interpretations of their responses, provides researchers with a method of checking for inconsistencies, challenges the researchers' assumptions, and provides them with an opportunity to re-analyze their data. The use of constant comparison means that one piece of data (for example, an interview) is compared with previous data and not considered on its own, enabling researchers to treat the data as a whole rather than fragmenting it. Constant comparison also enables the researcher to identify emerging/unanticipated themes within the research project.

STRENGTHS AND LIMITATIONS OF QUALITATIVE RESEARCH

Qualitative researchers have been criticized for overusing interviews and focus groups at the expense of other methods such as ethnography, observation, documentary analysis, case studies, and conversational analysis. Qualitative research has numerous strengths when properly conducted.

Strengths of Qualitative Research

• Issues can be examined in detail and in depth.
• Interviews are not restricted to specific questions and can be guided/redirected by the researcher in real time.
• The research framework and direction can be quickly revised as new information emerges.
• The data based on human experience that is obtained is powerful and sometimes more compelling than quantitative data.
• Subtleties and complexities about the research subjects and/or topic are discovered that are often missed by more positivistic enquiries.
• Data usually are collected from a few cases or individuals so findings cannot be generalized to a larger population. Findings can however be transferable to another setting.

Limitations of Qualitative Research

• Research quality is heavily dependent on the individual skills of the researcher and more easily influenced by the researcher's personal biases and idiosyncrasies.
• Rigor is more difficult to maintain, assess, and demonstrate.
• The volume of data makes analysis and interpretation time consuming.
• It is sometimes not as well understood and accepted as quantitative research within the scientific community
• The researcher's presence during data gathering, which is often unavoidable in qualitative research, can affect the subjects' responses.
• Issues of anonymity and confidentiality can present problems when presenting findings
• Findings can be more difficult and time consuming to characterize in a visual way.

PRESENTATION OF QUALITATIVE RESEARCH FINDINGS

The following extracts are examples of how qualitative data might be presented:

Data From an Interview.

The following is an example of how to present and discuss a quote from an interview.

The researcher should select quotes that are poignant and/or most representative of the research findings. Including large portions of an interview in a research paper is not necessary and often tedious for the reader. The setting and speakers should be established in the text at the end of the quote.

The student describes how he had used deep learning in a dispensing module. He was able to draw on learning from a previous module, “I found that while using the e learning programme I was able to apply the knowledge and skills that I had gained in last year's diseases and goals of treatment module.” (interviewee 22, male)

This is an excerpt from an article on curriculum reform that used interviews 5 :

The first question was, “Without the accreditation mandate, how much of this curriculum reform would have been attempted?” According to respondents, accreditation played a significant role in prompting the broad-based curricular change, and their comments revealed a nuanced view. Most indicated that the change would likely have occurred even without the mandate from the accreditation process: “It reflects where the profession wants to be … training a professional who wants to take on more responsibility.” However, they also commented that “if it were not mandated, it could have been a very difficult road.” Or it “would have happened, but much later.” The change would more likely have been incremental, “evolutionary,” or far more limited in its scope. “Accreditation tipped the balance” was the way one person phrased it. “Nobody got serious until the accrediting body said it would no longer accredit programs that did not change.”

Data From Observations

The following example is some data taken from observation of pharmacist patient consultations using the Calgary Cambridge guide. 6 , 7 The data are first presented and a discussion follows:

Pharmacist: We will soon be starting a stop smoking clinic. Patient: Is the interview over now? Pharmacist: No this is part of it. (Laughs) You can't tell me to bog off (sic) yet. (pause) We will be starting a stop smoking service here, Patient: Yes. Pharmacist: with one-to-one and we will be able to help you or try to help you. If you want it. In this example, the pharmacist has picked up from the patient's reaction to the stop smoking clinic that she is not receptive to advice about giving up smoking at this time; in fact she would rather end the consultation. The pharmacist draws on his prior relationship with the patient and makes use of a joke to lighten the tone. He feels his message is important enough to persevere but he presents the information in a succinct and non-pressurised way. His final comment of “If you want it” is important as this makes it clear that he is not putting any pressure on the patient to take up this offer. This extract shows that some patient cues were picked up, and appropriately dealt with, but this was not the case in all examples.

Data From Focus Groups

This excerpt from a study involving 11 focus groups illustrates how findings are presented using representative quotes from focus group participants. 8

Those pharmacists who were initially familiar with CPD endorsed the model for their peers, and suggested it had made a meaningful difference in the way they viewed their own practice. In virtually all focus groups sessions, pharmacists familiar with and supportive of the CPD paradigm had worked in collaborative practice environments such as hospital pharmacy practice. For these pharmacists, the major advantage of CPD was the linking of workplace learning with continuous education. One pharmacist stated, “It's amazing how much I have to learn every day, when I work as a pharmacist. With [the learning portfolio] it helps to show how much learning we all do, every day. It's kind of satisfying to look it over and see how much you accomplish.” Within many of the learning portfolio-sharing sessions, debates emerged regarding the true value of traditional continuing education and its outcome in changing an individual's practice. While participants appreciated the opportunity for social and professional networking inherent in some forms of traditional CE, most eventually conceded that the academic value of most CE programming was limited by the lack of a systematic process for following-up and implementing new learning in the workplace. “Well it's nice to go to these [continuing education] events, but really, I don't know how useful they are. You go, you sit, you listen, but then, well I at least forget.”

The following is an extract from a focus group (conducted by the author) with first-year pharmacy students about community placements. It illustrates how focus groups provide a chance for participants to discuss issues on which they might disagree.

Interviewer: So you are saying that you would prefer health related placements? Student 1: Not exactly so long as I could be developing my communication skill. Student 2: Yes but I still think the more health related the placement is the more I'll gain from it. Student 3: I disagree because other people related skills are useful and you may learn those from taking part in a community project like building a garden. Interviewer: So would you prefer a mixture of health and non health related community placements?

GUIDANCE FOR PUBLISHING QUALITATIVE RESEARCH

Qualitative research is becoming increasingly accepted and published in pharmacy and medical journals. Some journals and publishers have guidelines for presenting qualitative research, for example, the British Medical Journal 9 and Biomedcentral . 10 Medical Education published a useful series of articles on qualitative research. 11 Some of the important issues that should be considered by authors, reviewers and editors when publishing qualitative research are discussed below.

Introduction.

A good introduction provides a brief overview of the manuscript, including the research question and a statement justifying the research question and the reasons for using qualitative research methods. This section also should provide background information, including relevant literature from pharmacy, medicine, and other health professions, as well as literature from the field of education that addresses similar issues. Any specific educational or research terminology used in the manuscript should be defined in the introduction.

The methods section should clearly state and justify why the particular method, for example, face to face semistructured interviews, was chosen. The method should be outlined and illustrated with examples such as the interview questions, focusing exercises, observation criteria, etc. The criteria for selecting the study participants should then be explained and justified. The way in which the participants were recruited and by whom also must be stated. A brief explanation/description should be included of those who were invited to participate but chose not to. It is important to consider “fair dealing,” ie, whether the research design explicitly incorporates a wide range of different perspectives so that the viewpoint of 1 group is never presented as if it represents the sole truth about any situation. The process by which ethical and or research/institutional governance approval was obtained should be described and cited.

The study sample and the research setting should be described. Sampling differs between qualitative and quantitative studies. In quantitative survey studies, it is important to select probability samples so that statistics can be used to provide generalizations to the population from which the sample was drawn. Qualitative research necessitates having a small sample because of the detailed and intensive work required for the study. So sample sizes are not calculated using mathematical rules and probability statistics are not applied. Instead qualitative researchers should describe their sample in terms of characteristics and relevance to the wider population. Purposive sampling is common in qualitative research. Particular individuals are chosen with characteristics relevant to the study who are thought will be most informative. Purposive sampling also may be used to produce maximum variation within a sample. Participants being chosen based for example, on year of study, gender, place of work, etc. Representative samples also may be used, for example, 20 students from each of 6 schools of pharmacy. Convenience samples involve the researcher choosing those who are either most accessible or most willing to take part. This may be fine for exploratory studies; however, this form of sampling may be biased and unrepresentative of the population in question. Theoretical sampling uses insights gained from previous research to inform sample selection for a new study. The method for gaining informed consent from the participants should be described, as well as how anonymity and confidentiality of subjects were guaranteed. The method of recording, eg, audio or video recording, should be noted, along with procedures used for transcribing the data.

Data Analysis.

A description of how the data were analyzed also should be included. Was computer-aided qualitative data analysis software such as NVivo (QSR International, Cambridge, MA) used? Arrival at “data saturation” or the end of data collection should then be described and justified. A good rule when considering how much information to include is that readers should have been given enough information to be able to carry out similar research themselves.

One of the strengths of qualitative research is the recognition that data must always be understood in relation to the context of their production. 1 The analytical approach taken should be described in detail and theoretically justified in light of the research question. If the analysis was repeated by more than 1 researcher to ensure reliability or trustworthiness, this should be stated and methods of resolving any disagreements clearly described. Some researchers ask participants to check the data. If this was done, it should be fully discussed in the paper.

An adequate account of how the findings were produced should be included A description of how the themes and concepts were derived from the data also should be included. Was an inductive or deductive process used? The analysis should not be limited to just those issues that the researcher thinks are important, anticipated themes, but also consider issues that participants raised, ie, emergent themes. Qualitative researchers must be open regarding the data analysis and provide evidence of their thinking, for example, were alternative explanations for the data considered and dismissed, and if so, why were they dismissed? It also is important to present outlying or negative/deviant cases that did not fit with the central interpretation.

The interpretation should usually be grounded in interviewees or respondents' contributions and may be semi-quantified, if this is possible or appropriate, for example, “Half of the respondents said …” “The majority said …” “Three said…” Readers should be presented with data that enable them to “see what the researcher is talking about.” 1 Sufficient data should be presented to allow the reader to clearly see the relationship between the data and the interpretation of the data. Qualitative data conventionally are presented by using illustrative quotes. Quotes are “raw data” and should be compiled and analyzed, not just listed. There should be an explanation of how the quotes were chosen and how they are labeled. For example, have pseudonyms been given to each respondent or are the respondents identified using codes, and if so, how? It is important for the reader to be able to see that a range of participants have contributed to the data and that not all the quotes are drawn from 1 or 2 individuals. There is a tendency for authors to overuse quotes and for papers to be dominated by a series of long quotes with little analysis or discussion. This should be avoided.

Participants do not always state the truth and may say what they think the interviewer wishes to hear. A good qualitative researcher should not only examine what people say but also consider how they structured their responses and how they talked about the subject being discussed, for example, the person's emotions, tone, nonverbal communication, etc. If the research was triangulated with other qualitative or quantitative data, this should be discussed.

Discussion.

The findings should be presented in the context of any similar previous research and or theories. A discussion of the existing literature and how this present research contributes to the area should be included. A consideration must also be made about how transferrable the research would be to other settings. Any particular strengths and limitations of the research also should be discussed. It is common practice to include some discussion within the results section of qualitative research and follow with a concluding discussion.

The author also should reflect on their own influence on the data, including a consideration of how the researcher(s) may have introduced bias to the results. The researcher should critically examine their own influence on the design and development of the research, as well as on data collection and interpretation of the data, eg, were they an experienced teacher who researched teaching methods? If so, they should discuss how this might have influenced their interpretation of the results.

Conclusion.

The conclusion should summarize the main findings from the study and emphasize what the study adds to knowledge in the area being studied. Mays and Pope suggest the researcher ask the following 3 questions to determine whether the conclusions of a qualitative study are valid 12 : How well does this analysis explain why people behave in the way they do? How comprehensible would this explanation be to a thoughtful participant in the setting? How well does the explanation cohere with what we already know?

CHECKLIST FOR QUALITATIVE PAPERS

This paper establishes criteria for judging the quality of qualitative research. It provides guidance for authors and reviewers to prepare and review qualitative research papers for the American Journal of Pharmaceutical Education . A checklist is provided in Appendix 1 to assist both authors and reviewers of qualitative data.

ACKNOWLEDGEMENTS

Thank you to the 3 reviewers whose ideas helped me to shape this paper.

Appendix 1. Checklist for authors and reviewers of qualitative research.

Introduction

• □ Research question is clearly stated.
• □ Research question is justified and related to the existing knowledge base (empirical research, theory, policy).
• □ Any specific research or educational terminology used later in manuscript is defined.
• □ The process by which ethical and or research/institutional governance approval was obtained is described and cited.
• □ Reason for choosing particular research method is stated.
• □ Criteria for selecting study participants are explained and justified.
• □ Recruitment methods are explicitly stated.
• □ Details of who chose not to participate and why are given.
• □ Study sample and research setting used are described.
• □ Method for gaining informed consent from the participants is described.
• □ Maintenance/Preservation of subject anonymity and confidentiality is described.
• □ Method of recording data (eg, audio or video recording) and procedures for transcribing data are described.
• □ Methods are outlined and examples given (eg, interview guide).
• □ Decision to stop data collection is described and justified.
• □ Data analysis and verification are described, including by whom they were performed.
• □ Methods for identifying/extrapolating themes and concepts from the data are discussed.
• □ Sufficient data are presented to allow a reader to assess whether or not the interpretation is supported by the data.
• □ Outlying or negative/deviant cases that do not fit with the central interpretation are presented.
• □ Transferability of research findings to other settings is discussed.
• □ Findings are presented in the context of any similar previous research and social theories.
• □ Discussion often is incorporated into the results in qualitative papers.
• □ A discussion of the existing literature and how this present research contributes to the area is included.
• □ Any particular strengths and limitations of the research are discussed.
• □ Reflection of the influence of the researcher(s) on the data, including a consideration of how the researcher(s) may have introduced bias to the results is included.

Conclusions

• □ The conclusion states the main finings of the study and emphasizes what the study adds to knowledge in the subject area.

• Open access
• Published: 13 May 2024

What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review

• Olivia R. Phillips 1 , 2   na1 ,
• Cerian Harries 2 , 3   na1 ,
• Jo Leonardi-Bee 1 , 2 , 4   na1 ,
• Holly Knight 1 , 2 ,
• Lauren B. Sherar 2 , 3 ,
• Veronica Varela-Mato 2 , 3 &
• Joanne R. Morling 1 , 2 , 5  

Research Involvement and Engagement volume  10 , Article number:  48 ( 2024 ) Cite this article

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There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.

To determine the strengths and limitations to using creative PPI methods in health and social care research.

Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.

Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or “taboo” topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.

‘Creative PPI’ is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.

Plain English Summary

It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.

Peer Review reports

Introduction

Patient and public involvement (PPI) is the term used to describe the partnership between patients (including caregivers, potential patients, healthcare users etc.) or the public (a community member with no known interest in the topic) with researchers. It describes research that is done “‘with’ or ‘by’ the public, rather than ‘to,’ ‘about’ or ‘for’ them” [ 1 ]. In 2009, it became a legislative requirement for certain health and social care organisations to include patients, families, carers and communities in not only the planning of health and social care services, but the commissioning, delivery and evaluation of them too [ 2 ]. For example, funding applications for the National Institute of Health and Care Research (NIHR), a UK funding body, mandates a demonstration of how researchers plan to include patients/service users, the public and carers at each stage of the project [ 3 ]. However, this should not simply be a tokenistic, tick-box exercise. PPI should help formulate initial ideas and should be an instrumental, continuous part of the research process. Input from PPI can provide unique insights not yet considered and can ensure that research and health services are closely aligned to the needs and requirements of service users PPI also generally makes research more relevant with clearer outcomes and impacts [ 4 ]. Although this review refers to both patients and the public using the umbrella term ‘PPI’, it is important to acknowledge that these are two different groups with different motivations, needs and interests when it comes to health research and service delivery [ 5 ].

Despite continuing recognition of the need of PPI to improve quality of healthcare, researchers have also recognised that there is no ‘one size fits all’ method for involving patients [ 4 ]. Traditionally, PPI methods invite people to take part in interviews or focus groups to facilitate discussion, or surveys and questionnaires. However, these can sometimes be inaccessible or non-engaging for certain populations. For example, someone with communication difficulties may find it difficult to engage in focus groups or interviews. If individuals lack the appropriate skills to interact in these types of scenarios, they cannot take advantage of the participation opportunities it can provide [ 6 ]. Creative methods, however, aim to resolve these issues. These are a relatively new concept whereby researchers use creative methods (e.g., artwork, animations, Lego), to make PPI more accessible and engaging for those whose voices would otherwise go unheard. They ensure that all populations can engage in research, regardless of their background or skills. Seminal work has previously been conducted in this area, which brought to light the use of creative methodologies in research. Leavy (2008) [ 7 ] discussed how traditional interviews had limits on what could be expressed due to their sterile, jargon-filled and formulaic structure, read by only a few specialised academics. It was this that called for more creative approaches, which included narrative enquiry, fiction-based research, poetry, music, dance, art, theatre, film and visual art. These practices, which can be used in any stage of the research cycle, supported greater empathy, self-reflection and longer-lasting learning experiences compared to interviews [ 7 ]. They also pushed traditional academic boundaries, which made the research accessible not only to researchers, but the public too. Leavy explains that there are similarities between arts-based approaches and scientific approaches: both attempts to investigate what it means to be human through exploration, and used together, these complimentary approaches can progress our understanding of the human experience [ 7 ]. Further, it is important to acknowledge the parallels and nuances between creative and inclusive methods of PPI. Although creative methods aim to be inclusive (this should underlie any PPI activity, whether creative or not), they do not incorporate all types of accessible, inclusive methodologies e.g., using sign language for people with hearing impairments or audio recordings for people who cannot read. Given that there was not enough scope to include an evaluation of all possible inclusive methodologies, this review will focus on creative methods of PPI only.

We aimed to conduct a qualitative systematic review to highlight the strengths of creative PPI in health and social care research, as well as the limitations, which might act as a barrier to their implementation. A qualitative systematic review “brings together research on a topic, systematically searching for research evidence from primary qualitative studies and drawing the findings together” [ 8 ]. This review can then advise researchers of the best practices when designing PPI.

Public involvement

The PHIRST-LIGHT Public Advisory Group (PAG) consists of a team of experienced public contributors with a diverse range of characteristics from across the UK. The PAG was involved in the initial question setting and study design for this review.

Search strategy

For the purpose of this review, the JBI approach for conducting qualitative systematic reviews was followed [ 9 ]. The search terms were (“creativ*” OR “innovat*” OR “authentic” OR “original” OR “inclu*”) AND (“public and patient involvement” OR “patient and public involvement” OR “public and patient involvement and engagement” OR “patient and public involvement and engagement” OR “PPI” OR “PPIE” OR “co-produc*” OR “co-creat*” OR “co-design*” OR “cooperat*” OR “co-operat*”). This search string was modified according to the requirements of each database. Papers were filtered by title, abstract and keywords (see Additional file 1 for search strings). The databases searched included Web of Science (WoS), PubMed, ASSIA and CINAHL. The Cochrane Library was also searched to identify relevant reviews which could lead to the identification of primary research. The search was conducted on 14/04/23. As our aim was to report on the use of creative PPI in research, rather than more generic public engagement, we used electronic databases of scholarly peer-reviewed literature, which represent a wide range of recognised databases. These identified studies published in general international journals (WoS, PubMed), those in social sciences journals (ASSIA), those in nursing and allied health journals (CINAHL), and trials of interventions (Cochrane Library).

Inclusion criteria

Only full-text, English language, primary research papers from 2009 to 2023 were included. This was the chosen timeframe as in 2009 the Health and Social Reform Act made it mandatory for certain Health and Social Care organisations to involve the public and patients in planning, delivering, and evaluating services [ 2 ]. Only creative methods of PPI were accepted, rather than traditional methods, such as interviews or focus groups. For the purposes of this paper, creative PPI included creative art or arts-based approaches (e.g., e.g. stories, songs, drama, drawing, painting, poetry, photography) to enhance engagement. Titles were related to health and social care and the creative PPI was used to engage with people as research advisors, not as study participants. Meta-analyses, conference abstracts, book chapters, commentaries and reviews were excluded. There were no limits concerning study location or the demographic characteristics of the PPI groups. Only qualitative data were accepted.

Quality appraisal

Quality appraisal using the Critical Appraisal Skills Programme (CASP) checklist [ 10 ] was conducted by the primary authors (ORP and CH). This was done independently, and discrepancies were discussed and resolved. If a consensus could not be reached, a third independent reviewer was consulted (JRM). The full list of quality appraisal questions can be found in Additional file 2 .

Data extraction

ORP extracted the study characteristics and a subset of these were checked by CH. Discrepancies were discussed and amendments made. Extracted data included author, title, location, year of publication, year study was carried out, research question/aim, creative methods used, number of participants, mean age, gender, ethnicity of participants, setting, limitations and strengths of creative PPI and main findings.

Data analysis

The included studies were analysed using inductive thematic analysis [ 11 ], where themes were determined by the data. The familiarisation stage took place during full-text reading of the included articles. Anything identified as a strength or limitation to creative PPI methods was extracted verbatim as an initial code and inputted into the data extraction Excel sheet. Similar codes were sorted into broader themes, either under ‘strengths’ or ‘limitations’ and reviewed. Themes were then assigned a name according to the codes.

The search yielded 9978 titles across the 5 databases: Web of Science (1480 results), PubMed (94 results), ASSIA (2454 results), CINAHL (5948 results) and Cochrane Library (2 results), resulting in 8553 different studies after deduplication. ORP and CH independently screened their titles and abstracts, excluding those that did not meet the criteria. After assessment, 12 studies were included (see Fig.  1 ).

PRISMA flowchart of the study selection process

Study characteristics

The included studies were published between 2018 and 2022. Seven were conducted in the UK [ 12 , 14 , 15 , 17 , 18 , 19 , 23 ], two in Canada [ 21 , 22 ], one in Australia [ 13 ], one in Norway [ 16 ] and one in Ireland [ 20 ]. The PPI activities occurred across various settings, including a school [ 12 ], social club [ 12 ], hospital [ 17 ], university [ 22 ], theatre [ 19 ], hotel [ 20 ], or online [ 15 , 21 ], however this information was omitted in 5 studies [ 13 , 14 , 16 , 18 , 23 ]. The number of people attending the PPI sessions varied, ranging from 6 to 289, however the majority (ten studies) had less than 70 participants [ 13 , 14 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. Seven studies did not provide information on the age or gender of the PPI groups. Of those that did, ages ranged from 8 to 76 and were mostly female. The ethnicities of the PPI group members were also rarely recorded (see Additional file 3 for data extraction table).

Types of creative methods

The type of creative methods used to engage the PPI groups were varied. These included songs, poems, drawings, photograph elicitation, drama performance, visualisations, Facebook, photography, prototype development, cultural animation, card sorting and creating personas (see Table  1 ). These were sometimes accompanied by traditional methods of PPI such as interviews and focus group discussions.

The 12 included studies were all deemed to be of good methodological quality, with scores ranging from 6/10 to 10/10 with the CASP critical appraisal tool [ 10 ] (Table  2 ).

Thematic analysis

Analysis identified four limitations and five strengths to creative PPI (see Fig.  2 ). Limitations included the time and resource intensity of creative PPI methods, its lack of generalisation, ethical issues and external factors. Strengths included the disruption of power hierarchies, the engaging and inclusive nature of the methods and their long-term cost and time efficiency. Creative PPI methods also allowed mundane and “taboo” topics to be discussed within a safe space.

Theme map of strengths and limitations

Limitations of creative PPI

Creative ppi methods are time and resource intensive.

The time and resource intensive nature of creative PPI methods is a limitation, most notably for the persona-scenario methodology. Valaitis et al. [ 22 ] used 14 persona-scenario workshops with 70 participants to co-design a healthcare intervention, which aimed to promote optimal aging in Canada. Using the persona method, pairs composed of patients, healthcare providers, community service providers and volunteers developed a fictional character which they believed represented an ‘end-user’ of the healthcare intervention. Due to the depth and richness of the data produced the authors reported that it was time consuming to analyse. Further, they commented that the amount of information was difficult to disseminate to scientific leads and present at team meetings. Additionally, to ensure the production of high-quality data, to probe for details and lead group discussion there was a need for highly skilled facilitators. The resource intensive nature of the creative co-production was also noted in a study using the persona scenario and creative worksheets to develop a prototype decision support tool for individuals with malignant pleural effusion [ 17 ]. With approximately 50 people, this was also likely to yield a high volume of data to consider.

To prepare materials for populations who cannot engage in traditional methods of PPI was also timely. Kearns et al. [ 18 ] developed a feedback questionnaire for people with aphasia to evaluate ICT-delivered rehabilitation. To ensure people could participate effectively, the resources used during the workshops, such as PowerPoints, online images and photographs, had to be aphasia-accessible, which was labour and time intensive. The author warned that this time commitment should not be underestimated.

There are further practical limitations to implementing creative PPI, such as the costs of materials for activities as well as hiring a space for workshops. For example, the included studies in this review utilised pens, paper, worksheets, laptops, arts and craft supplies and magazines and took place in venues such as universities, a social club, and a hotel. Further, although not limited to creative PPI methods exclusively but rather most studies involving the public, a financial incentive was often offered for participation, as well as food, parking, transport and accommodation [ 21 , 22 ].

Creative PPI lacks generalisation

Another barrier to the use of creative PPI methods in health and social care research was the individual nature of its output. Those who participate, usually small in number, produce unique creative outputs specific to their own experiences, opinions and location. Craven et al. [ 13 ], used arts-based visualisations to develop a toolbox for adults with mental health difficulties. They commented, “such an approach might still not be worthwhile”, as the visualisations were individualised and highly personal. This indicates that the output may fail to meet the needs of its end-users. Further, these creative PPI groups were based in certain geographical regions such as Stoke-on-Trent [ 19 ] Sheffield [ 23 ], South Wales [ 12 ] or Ireland [ 20 ], which limits the extent the findings can be applied to wider populations, even within the same area due to individual nuances. Further, the study by Galler et al. [ 16 ], is specific to the Norwegian context and even then, maybe only a sub-group of the Norwegian population as the sample used was of higher socioeconomic status.

However, Grindell et al. [ 17 ], who used persona scenarios, creative worksheets and prototype development, pointed out that the purpose of this type of research is to improve a certain place, rather than apply findings across other populations and locations. Individualised output may, therefore, only be a limitation to research wanting to conduct PPI on a large scale.

If, however, greater generalisation within PPI is deemed necessary, then social media may offer a resolution. Fedorowicz et al. [ 15 ], used Facebook to gain feedback from the public on the use of video-recording methodology for an upcoming project. This had the benefit of including a more diverse range of people (289 people joined the closed group), who were spread geographically around the UK, as well as seven people from overseas.

Creative PPI has ethical issues

As with other research, ethical issues must be taken into consideration. Due to the nature of creative approaches, as well as the personal effort put into them, people often want to be recognised for their work. However, this compromises principles so heavily instilled in research such as anonymity and confidentiality. With the aim of exploring issues related to health and well-being in a town in South Wales, Byrne et al. [ 12 ], asked year 4/5 and year 10 pupils to create poems, songs, drawings and photographs. Community members also created a performance, mainly of monologues, to explore how poverty and inequalities are dealt with. Byrne noted the risks of these arts-based approaches, that being the possibility of over-disclosure and consequent emotional distress, as well as people’s desire to be named for their work. On one hand, the anonymity reduces the sense of ownership of the output as it does not portray a particular individual’s lived experience anymore. On the other hand, however, it could promote a more honest account of lived experience. Supporting this, Webber et al. [ 23 ], who used the persona method to co-design a back pain educational resource prototype, claimed that the anonymity provided by this creative technique allowed individuals to externalise and anonymise their own personal experience, thus creating a more authentic and genuine resource for future users. This implies that anonymity can be both a limitation and strength here.

The use of creative PPI methods is impeded by external factors

Despite the above limitations influencing the implementation of creative PPI techniques, perhaps the most influential is that creative methodologies are simply not mainstream [ 19 ]. This could be linked to the issues above, like time and resource intensity, generalisation and ethical issues but it is also likely to involve more systemic factors within the research community. Micsinszki et al. [ 21 ], who co-designed a hub for the health and well-being of vulnerable populations, commented that there is insufficient infrastructure to conduct meaningful co-design as well as a dominant medical model. Through a more holistic lens, there are “sociopolitical environments that privilege individualism over collectivism, self-sufficiency over collaboration, and scientific expertise over other ways of knowing based on lived experience” [ 21 ]. This, it could be suggested, renders creative co-design methodologies, which are based on the foundations of collectivism, collaboration and imagination an invalid technique in the research field, which is heavily dominated by more scientific methods offering reproducibility, objectivity and reliability.

Although we acknowledge that creative PPI techniques are not always appropriate, it may be that their main limitation is the lack of awareness of these methods or lack of willingness to use them. Further, there is always the risk that PPI, despite being a mandatory part of research, is used in a tokenistic or tick-box fashion [ 20 ], without considering the contribution that meaningful PPI could make to enhancing the research. It may be that PPI, let alone creative PPI, is not at the forefront of researchers’ minds when planning research.

Strengths of creative PPI

Creative ppi disrupts power hierarchies.

One of the main strengths of creative PPI techniques, cited most frequently in the included literature, was that they disrupt traditional power hierarchies [ 12 , 13 , 17 , 19 , 23 ]. For example, the use of theatre performance blurred the lines between professional and lay roles between the community and policy makers [ 12 ]. Individuals created a monologue to portray how poverty and inequality impact daily life and presented this to representatives of the National Assembly of Wales, Welsh Government, the Local Authority, Arts Council and Westminster. Byrne et al. [ 12 ], states how this medium allowed the community to engage with the people who make decisions about their lives in an environment of respect and understanding, where the hierarchies are not as visible as in other settings, e.g., political surgeries. Creative PPI methods have also removed traditional power hierarchies between researchers and adolescents. Cook et al. [ 13 ], used arts-based approaches to explore adolescents’ ideas about the “perfect” condom. They utilised the “Life Happens” resource, where adolescents drew and then decorated a person with their thoughts about sexual relationships, not too dissimilar from the persona-scenario method. This was then combined with hypothetical scenarios about sexuality. A condom-mapping exercise was then implemented, where groups shared the characteristics that make a condom “perfect” on large pieces of paper. Cook et al. [ 13 ], noted that usually power imbalances make it difficult to elicit information from adolescents, however these power imbalances were reduced due to the use of creative co-design techniques.

The same reduction in power hierarchies was noted by Grindell et al. [ 17 ], who used the person-scenario method and creative worksheets with individuals with malignant pleural effusion. This was with the aim of developing a prototype of a decision support tool for patients to help with treatment options. Although this process involved a variety of stakeholders, such as patients, carers and healthcare professionals, creative co-design was cited as a mechanism that worked to reduce power imbalances – a limitation of more traditional methods of research. Creative co-design blurred boundaries between end-users and clinical staff and enabled the sharing of ideas from multiple, valuable perspectives, meaning the prototype was able to suit user needs whilst addressing clinical problems.

Similarly, a specific creative method named cultural animation was also cited to dissolve hierarchies and encourage equal contributions from participants. Within this arts-based approach, Keleman et al. [ 19 ], explored the concept of “good health” with individuals from Stoke-on Trent. Members of the group created art installations using ribbons, buttons, cardboard and straws to depict their idea of a “healthy community”, which was accompanied by a poem. They also created a 3D Facebook page and produced another poem or song addressing the government to communicate their version of a “picture of health”. Public participants said that they found the process empowering, honest, democratic, valuable and practical.

This dissolving of hierarchies and levelling of power is beneficial as it increases the sense of ownership experienced by the creators/producers of the output [ 12 , 17 , 23 ]. This is advantageous as it has been suggested to improve its quality [ 23 ].

Creative PPI allows the unsayable to be said

Creative PPI fosters a safe space for mundane or taboo topics to be shared, which may be difficult to communicate using traditional methods of PPI. For example, the hypothetical nature of condom mapping and persona-scenarios meant that adolescents could discuss a personal topic without fear of discrimination, judgement or personal disclosure [ 13 ]. The safe space allowed a greater volume of ideas to be generated amongst peers where they might not have otherwise. Similarly, Webber et al. [ 23 ], , who used the persona method to co-design the prototype back pain educational resource, also noted how this method creates anonymity whilst allowing people the opportunity to externalise personal experiences, thoughts and feelings. Other creative methods were also used, such as drawing, collaging, role play and creating mood boards. A cardboard cube (labelled a “magic box”) was used to symbolise a physical representation of their final prototype. These creative methods levelled the playing field and made personal experiences accessible in a safe, open environment that fostered trust, as well as understanding from the researchers.

It is not only sensitive subjects that were made easier to articulate through creative PPI. The communication of mundane everyday experiences were also facilitated, which were deemed typically ‘unsayable’. This was specifically given in the context of describing intangible aspects of everyday health and wellbeing [ 11 ]. Graphic designers can also be used to visually represent the outputs of creative PPI. These captured the movement and fluidity of people and well as the relationships between them - things that cannot be spoken but can be depicted [ 21 ].

Creative PPI methods are inclusive

Another strength of creative PPI was that it is inclusive and accessible [ 17 , 19 , 21 ]. The safe space it fosters, as well as the dismantling of hierarchies, welcomed people from a diverse range of backgrounds and provided equal opportunities [ 21 ], especially for those with communication and memory difficulties who might be otherwise excluded from PPI. Kelemen et al. [ 19 ], who used creative methods to explore health and well-being in Stoke-on-Trent, discussed how people from different backgrounds came together and connected, discussed and reached a consensus over a topic which evoked strong emotions, that they all have in common. Individuals said that the techniques used “sets people to open up as they are not overwhelmed by words”. Similarly, creative activities, such as the persona method, have been stated to allow people to express themselves in an inclusive environment using a common language. Kearns et al. [ 18 ], who used aphasia-accessible material to develop a questionnaire with aphasic individuals, described how they felt comfortable in contributing to workshops (although this material was time-consuming to make, see ‘Limitations of creative PPI’ ).

Despite the general inclusivity of creative PPI, it can also be exclusive, particularly if online mediums are used. Fedorowicz et al. [ 15 ], used Facebook to create a PPI group, and although this may rectify previous drawbacks about lack of generalisation of creative methods (as Facebook can reach a greater number of people, globally), it excluded those who are not digitally active or have limited internet access or knowledge of technology. Online methods have other issues too. Maintaining the online group was cited as challenging and the volume of responses required researchers to interact outside of their working hours. Despite this, online methods like Facebook are very accessible for people who are physically disabled.

Creative PPI methods are engaging

The process of creative PPI is typically more engaging and produces more colourful data than traditional methods [ 13 ]. Individuals are permitted and encouraged to explore a creative self [ 19 ], which can lead to the exploration of new ideas and an overall increased enjoyment of the process. This increased engagement is particularly beneficial for younger PPI groups. For example, to involve children in the development of health food products, Galler et al. [ 16 ] asked 9-12-year-olds to take photos of their food and present it to other children in a “show and tell” fashion. They then created a newspaper article describing a new healthy snack. In this creative focus group, children were given lab coats to further their identity as inventors. Galler et al. [ 16 ], notes that the methods were highly engaging and facilitated teamwork and group learning. This collaborative nature of problem-solving was also observed in adults who used personas and creative worksheets to develop the resource for lower back pain [ 23 ]. Dementia patients too have been reported to enjoy the creative and informal approach to idea generation [ 20 ].

The use of cultural animation allowed people to connect with each other in a way that traditional methods do not [ 19 , 21 ]. These connections were held in place by boundary objects, such as ribbons, buttons, fabric and picture frames, which symbolised a shared meaning between people and an exchange of knowledge and emotion. Asking groups to create an art installation using these objects further fostered teamwork and collaboration, both at an individual and collective level. The exploration of a creative self increased energy levels and encouraged productive discussions and problem-solving [ 19 ]. Objects also encouraged a solution-focused approach and permitted people to think beyond their usual everyday scope [ 17 ]. They also allowed facilitators to probe deeper about the greater meanings carried by the object, which acted as a metaphor [ 21 ].

From the researcher’s point of view, co-creative methods gave rise to ideas they might not have initially considered. Valaitis et al. [ 22 ], found that over 40% of the creative outputs were novel ideas brought to light by patients, healthcare providers/community care providers, community service providers and volunteers. One researcher commented, “It [the creative methods] took me on a journey, in a way that when we do other pieces of research it can feel disconnected” [ 23 ]. Another researcher also stated they could not return to the way they used to do research, as they have learnt so much about their own health and community and how they are perceived [ 19 ]. This demonstrates that creative processes not only benefit the project outcomes and the PPI group, but also facilitators and researchers. However, although engaging, creative methods have been criticised for not demonstrating academic rigour [ 17 ]. Moreover, creative PPI may also be exclusive to people who do not like or enjoy creative activities.

Creative PPI methods are cost and time efficient

Creative PPI workshops can often produce output that is visible and tangible. This can save time and money in the long run as the output is either ready to be implemented in a healthcare setting or a first iteration has already been developed. This may also offset the time and costs it takes to implement creative PPI. For example, the prototype of the decision support tool for people with malignant pleural effusion was developed using personas and creative worksheets. The end result was two tangible prototypes to drive the initial idea forward as something to be used in practice [ 17 ]. The use of creative co-design in this case saved clinician time as well as the time it would take to develop this product without the help of its end-users. In the development of this particular prototype, analysis was iterative and informed the next stage of development, which again saved time. The same applies for the feedback questionnaire for the assessment of ICT delivered aphasia rehabilitation. The co-created questionnaire, designed with people with aphasia, was ready to be used in practice [ 18 ]. This suggests that to overcome time and resource barriers to creative PPI, researchers should aim for it to be engaging whilst also producing output.

That useable products are generated during creative workshops signals to participating patients and public members that they have been listened to and their thoughts and opinions acted upon [ 23 ]. For example, the development of the back pain resource based on patient experiences implies that their suggestions were valid and valuable. Further, those who participated in the cultural animation workshop reported that the process visualises change, and that it already feels as though the process of change has started [ 19 ].

The most cost and time efficient method of creative PPI in this review is most likely the use of Facebook to gather feedback on project methodology [ 15 ]. Although there were drawbacks to this, researchers could involve more people from a range of geographical areas at little to no cost. Feedback was instantaneous and no training was required. From the perspective of the PPI group, they could interact however much or little they wish with no time commitment.

This systematic review identified four limitations and five strengths to the use of creative PPI in health and social care research. Creative PPI is time and resource intensive, can raise ethical issues and lacks generalisability. It is also not accepted by the mainstream. These factors may act as barriers to the implementation of creative PPI. However, creative PPI disrupts traditional power hierarchies and creates a safe space for taboo or mundane topics. It is also engaging, inclusive and can be time and cost efficient in the long term.

Something that became apparent during data analysis was that these are not blanket strengths and limitations of creative PPI as a whole. The umbrella term ‘creative PPI’ is broad and encapsulates a wide range of activities, ranging from music and poems to prototype development and persona-scenarios, to more simplistic things like the use of sticky notes and ordering cards. Many different activities can be deemed ‘creative’ and the strengths and limitations of one does not necessarily apply to another. For example, cultural animation takes greater effort to prepare than the use of sticky notes and sorting cards, and the use of Facebook is cheaper and wider reaching than persona development. Researchers should use their discretion and weigh up the benefits and drawbacks of each method to decide on a technique which suits the project. What might be a limitation to creative PPI in one project may not be in another. In some cases, creative PPI may not be suitable at all.

Furthermore, the choice of creative PPI method also depends on the needs and characteristics of the PPI group. Children, adults and people living with dementia or language difficulties all have different engagement needs and capabilities. This indicates that creative PPI is not one size fits all and that the most appropriate method will change depending on the composition of the group. The choice of method will also be determined by the constraints of the research project, namely time, money and the research aim. For example, if there are time constraints, then a method which yields a lot of data and requires a lot of preparation may not be appropriate. If generalisation is important, then an online method is more suitable. Together this indicates that the choice of creative PPI method is highly individualised and dependent on multiple factors.

Although the limitations discussed in this review apply to creative PPI, they are not exclusive to creative PPI. Ethical issues are a consideration within general PPI research, especially when working with more vulnerable populations, such as children or adults living with a disability. It can also be the case that traditional PPI methods lack generalisability, as people who volunteer to be part of such a group are more likely be older, middle class and retired [ 24 ]. Most research is vulnerable to this type of bias, however, it is worth noting that generalisation is not always a goal and research remains valid and meaningful in its absence. Although online methods may somewhat combat issues related to generalisability, these methods still exclude people who do not have access to the internet/technology or who choose not to use it, implying that online PPI methods may not be wholly representative of the general population. Saying this, however, the accessibility of creative PPI techniques differs from person to person, and for some, online mediums may be more accessible (for example for those with a physical disability), and for others, this might be face-to-face. To combat this, a range of methods should be implemented. Planning multiple focus group and interviews for traditional PPI is also time and resource intensive, however the extra resources required to make this creative may be even greater. Although, the rich data provided may be worth the preparation and analysis time, which is also likely to depend on the number of participants and workshop sessions required. PPI, not just creative PPI, often requires the provision of a financial incentive, refreshments, parking and accommodation, which increase costs. These, however, are imperative and non-negotiable, as they increase the accessibility of research, especially to minority and lower-income groups less likely to participate. Adequate funding is also important for co-design studies where repeated engagement is required. One barrier to implementation, which appears to be exclusive to creative methods, however, is that creative methods are not mainstream. This cannot be said for traditional PPI as this is often a mandatory part of research applications.

Regarding the strengths of creative PPI, it could be argued that most appear to be exclusive to creative methodologies. These are inclusive by nature as multiple approaches can be taken to evoke ideas from different populations - approaches that do not necessarily rely on verbal or written communication like interviews and focus groups do. Given the anonymity provided by some creative methods, such as personas, people may be more likely to discuss their personal experiences under the guise of a general end-user, which might be more difficult to maintain when an interviewer is asking an individual questions directly. Additionally, creative methods are by nature more engaging and interactive than traditional methods, although this is a blanket statement and there may be people who find the question-and-answer/group discussion format more engaging. Creative methods have also been cited to eliminate power imbalances which exist in traditional research [ 12 , 13 , 17 , 19 , 23 ]. These imbalances exist between researchers and policy makers and adolescents, adults and the community. Lastly, although this may occur to a greater extent in creative methods like prototype development, it could be suggested that PPI in general – regardless of whether it is creative - is more time and cost efficient in the long-term than not using any PPI to guide or refine the research process. It must be noted that these are observations based on the literature. To be certain these differences exist between creative and traditional methods of PPI, direct empirical evaluation of both should be conducted.

To the best of our knowledge, this is the first review to identify the strengths and limitations to creative PPI, however, similar literature has identified barriers and facilitators to PPI in general. In the context of clinical trials, recruitment difficulties were cited as a barrier, as well as finding public contributors who were free during work/school hours. Trial managers reported finding group dynamics difficult to manage and the academic environment also made some public contributors feel nervous and lacking confidence to speak. Facilitators, however, included the shared ownership of the research – something that has been identified in the current review too. In addition, planning and the provision of knowledge, information and communication were also identified as facilitators [ 25 ]. Other research on the barriers to meaningful PPI in trial oversight committees included trialist confusion or scepticism over the PPI role and the difficulties in finding PPI members who had a basic understanding of research [ 26 ]. However, it could be argued that this is not representative of the average patient or public member. The formality of oversight meetings and the technical language used also acted as a barrier, which may imply that the informal nature of creative methods and its lack of dependency on literacy skills could overcome this. Further, a review of 42 reviews on PPI in health and social care identified financial compensation, resources, training and general support as necessary to conduct PPI, much like in the current review where the resource intensiveness of creative PPI was identified as a limitation. However, others were identified too, such as recruitment and representativeness of public contributors [ 27 ]. Like in the current review, power imbalances were also noted, however this was included as both a barrier and facilitator. Collaboration seemed to diminish hierarchies but not always, as sometimes these imbalances remained between public contributors and healthcare staff, described as a ‘them and us’ culture [ 27 ]. Although these studies compliment the findings of the current review, a direct comparison cannot be made as they do not concern creative methods. However, it does suggest that some strengths and weaknesses are shared between creative and traditional methods of PPI.

Strengths and limitations of this review

Although a general definition of creative PPI exists, it was up to our discretion to decide exactly which activities were deemed as such for this review. For example, we included sorting cards, the use of interactive whiteboards and sticky notes. Other researchers may have a more or less stringent criteria. However, two reviewers were involved in this decision which aids the reliability of the included articles. Further, it may be that some of the strengths and limitations cannot fully be attributed to the creative nature of the PPI process, but rather their co-created nature, however this is hard to disentangle as the included papers involved both these aspects.

During screening, it was difficult to decide whether the article was utilising creative qualitative methodology or creative PPI , as it was often not explicitly labelled as such. Regardless, both approaches involved the public/patients refining a healthcare product/service. This implies that if this review were to be replicated, others may do it differently. This may call for greater standardisation in the reporting of the public’s involvement in research. For example, the NIHR outlines different approaches to PPI, namely “consultation”, “collaboration”, “co-production” and “user-controlled”, which each signify an increased level of public power and influence [ 28 ]. Papers with elements of PPI could use these labels to clarify the extent of public involvement, or even explicitly state that there was no PPI. Further, given our decision to include only scholarly peer-reviewed literature, it is possible that data were missed within the grey literature. Similarly, the literature search will not have identified all papers relating to different types of accessible inclusion. However, the intent of the review was to focus solely on those within the definition of creative.

This review fills a gap in the literature and helps circulate and promote the concept of creative PPI. Each stage of this review, namely screening and quality appraisal, was conducted by two independent reviewers. However, four full texts could not be accessed during the full text reading stage, meaning there are missing data that could have altered or contributed to the findings of this review.

Research recommendations

Given that creative PPI can require effort to prepare, perform and analyse, sufficient time and funding should be allocated in the research protocol to enable meaningful and continuous PPI. This is worthwhile as PPI can significantly change the research output so that it aligns closely with the needs of the group it is to benefit. Researchers should also consider prototype development as a creative PPI activity as this might reduce future time/resource constraints. Shifting from a top-down approach within research to a bottom-up can be advantageous to all stakeholders and can help move creative PPI towards the mainstream. This, however, is the collective responsibility of funding bodies, universities and researchers, as well as committees who approve research bids.

A few of the included studies used creative techniques alongside traditional methods, such as interviews, which could also be used as a hybrid method of PPI, perhaps by researchers who are unfamiliar with creative techniques or to those who wish to reap the benefits of both. Often the characteristics of the PPI group were not included, including age, gender and ethnicity. It would be useful to include such information to assess how representative the PPI group is of the population of interest.

Creative PPI is a relatively novel approach of engaging the public and patients in research and it has both advantages and disadvantages compared to more traditional methods. There are many approaches to implementing creative PPI and the choice of technique will be unique to each piece of research and is reliant on several factors. These include the age and ability of the PPI group as well as the resource limitations of the project. Each method has benefits and drawbacks, which should be considered at the protocol-writing stage. However, given adequate funding, time and planning, creative PPI is a worthwhile and engaging method of generating ideas with end-users of research – ideas which may not be otherwise generated using traditional methods.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Critical Appraisal Skills Programme

The Joanna Briggs Institute

National Institute of Health and Care Research

Public Advisory Group

Public and Patient Involvement

Web of Science

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Acknowledgements

With thanks to the PHIRST-LIGHT public advisory group and consortium for their thoughts and contributions to the design of this work.

The research team is supported by a National Institute for Health and Care Research grant (PHIRST-LIGHT Reference NIHR 135190).

Author information

Olivia R. Phillips and Cerian Harries share joint first authorship.

Authors and Affiliations

Nottingham Centre for Public Health and Epidemiology, Lifespan and Population Health, School of Medicine, University of Nottingham, Clinical Sciences Building, City Hospital Campus, Hucknall Road, Nottingham, NG5 1PB, UK

Olivia R. Phillips, Jo Leonardi-Bee, Holly Knight & Joanne R. Morling

National Institute for Health and Care Research (NIHR) PHIRST-LIGHT, Nottingham, UK

Olivia R. Phillips, Cerian Harries, Jo Leonardi-Bee, Holly Knight, Lauren B. Sherar, Veronica Varela-Mato & Joanne R. Morling

School of Sport, Exercise and Health Sciences, Loughborough University, Epinal Way, Loughborough, Leicestershire, LE11 3TU, UK

Cerian Harries, Lauren B. Sherar & Veronica Varela-Mato

Nottingham Centre for Evidence Based Healthcare, School of Medicine, University of Nottingham, Nottingham, UK

Jo Leonardi-Bee

NIHR Nottingham Biomedical Research Centre (BRC), Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, NG7 2UH, UK

Joanne R. Morling

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Contributions

Author contributions: study design: ORP, CH, JRM, JLB, HK, LBS, VVM, literature searching and screening: ORP, CH, JRM, data curation: ORP, CH, analysis: ORP, CH, JRM, manuscript draft: ORP, CH, JRM, Plain English Summary: ORP, manuscript critical review and editing: ORP, CH, JRM, JLB, HK, LBS, VVM.

Corresponding author

Correspondence to Olivia R. Phillips .

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Additional file 1: Search strings: Description of data: the search strings and filters used in each of the 5 databases in this review

Additional file 2: Quality appraisal questions: Description of data: CASP quality appraisal questions

40900_2024_580_moesm3_esm.docx.

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Phillips, O.R., Harries, C., Leonardi-Bee, J. et al. What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review. Res Involv Engagem 10 , 48 (2024). https://doi.org/10.1186/s40900-024-00580-4

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“We know what we should be eating, but we don’t always do that.” How and why people eat the way they do: a qualitative study with rural australians

• Nina Van Dyke   ORCID: orcid.org/0000-0002-8872-3451 1 ,
• Michael Murphy   ORCID: orcid.org/0000-0003-0434-4567 2 &
• Eric J. Drinkwater   ORCID: orcid.org/0000-0002-9594-9360 3  

BMC Public Health volume  24 , Article number:  1240 ( 2024 ) Cite this article

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There is evidence that most people are aware of the importance of healthy eating and have a broad understanding regarding types of food that enhance or detract from health. However, greater health literacy does not always result in healthier eating. Andreasen’s Social Marketing Model and Community-Based Social Marketing both posit that, in order to change health behaviours, it is crucial to understand reasons for current behaviours and perceived barriers and benefits to improved behaviours. Limited research has been conducted, however, that explores these issues with general populations. This study aimed to help address this gap in the evidence using a qualitative methodology.

Three group discussions were conducted with a total of 23 participants: (1) young women aged 18–24 with no children; (2) women aged 35–45 with primary school aged children; and (3) men aged 35–50 living with a partner and with pre- or primary school aged children. The discussions took place in a regional centre of Victoria, Australia. Transcriptions were thematically analysed using an inductive descriptive approach and with reference to a recent integrated framework of food choice that identified five key interrelated determinants: food– internal factors; food– external factors; personal-state factors; cognitive factors; and sociocultural factors.

We found that food choice was complex, with all five determinants evident from the discussions. However, the “Social environment” sub-category of “Food-external factors”, which included family, work, and social structures, and expectations (or perceived expectations) of family members, colleagues, friends, and others, was particularly prominent. Knowledge that one should practice healthy eating, which falls under the “Cognitive factor” category, while seen as an aspiration by most participants, was often viewed as unrealistic, trumped by the need and/or desire for convenience, a combination of Food-external factor: Social environment and Personal-state factor: Psychological components.

Conclusions

We found that decisions regarding what, when, and how much to eat are seen as heavily influenced by factors outside the control of the individual. It appears, therefore, that a key to improving people’s eating behaviours is to make it easy to eat more healthfully, or at least not much harder than eating poorly.

Peer Review reports

A plethora of recommendations exist regarding how people should eat to maintain better health [e.g., 1 , 2 , 3 ]. Moreover, there is evidence that most people have a reasonable awareness of connections between healthier foods and better health, and a broad understanding regarding types of food that enhance or detract from health [ 4 , 5 , 6 ]. However, greater health literacy does not always result in healthier eating [ 7 – 8 ].

Evidence suggests that public health and health-promotion interventions with a theoretical basis are more effective than those lacking such a foundation [ 9 , 10 , 11 ]. Andreasen’s Social Marketing Model [ 12 ] posits that a primary focus for behaviour change is on learning what people want and need rather than trying to persuade them to adopt particular behaviours or goals. Community-based social marketing sets out six steps necessary for enacting societal behavioural change; step two is to understand perceived barriers and benefits to develop interventions [ 13 ].

Limited research has been conducted, however, that explores how people in the general population eat and their perceptions regarding why they eat the way they do [ 14 – 15 ]. Although several recent papers have examined barriers to and enablers of healthier eating [e.g., 16 ], relatively few are from the perspective of the consumers themselves [e.g., 17 – 18 ] or are narrowly focused on particular types of healthy consumption [e.g., 19 ].

Healthy eating: knowing vs. doing

Food-based dietary guidelines are available for more than 90 countries globally. Although there is some variation across guidelines regarding particular foods, there is broad agreement to consume a variety of foods; consume some foods in higher proportion than others; consume fruits, vegetables, and legumes; and to limit sugar, fat, and salt [ 20 , 21 , 22 ].

There is mixed evidence regarding whether most people broadly understand what constitutes a healthy diet and believe they should try to eat healthily. A systematic review of the psychological literature on healthy diet, for example, found that the public has a “remarkably accurate” understanding of healthy nutrition and that this understanding reflects key dietary guidelines [ 23 ]. Focus groups with participants segmented by age and gender found that most participants were aware of the type of foods that contributed to a healthy diet and the importance of achieving a healthy balance within a diet [ 24 ]. Other studies, however, have found evidence of confusion and misperceptions amongst the general public. A cross-sectional survey of 1,097 adults aged 18–64 in Victoria, Australia and 135 professional dietitians, for example, found large discrepancies in which of various food items were considered healthy. Amongst women and those living in higher socio-economic areas, however, views were similar [ 25 ]. An earlier survey of Swiss consumers found that between 3% and 38% incorrectly answered procedural nutrition knowledge items. Again, this overall finding differed by sub-groups [ 26 ].

However, this knowledge does not necessarily result in healthy eating [ 27 ]. A systematic review of the relationship between nutrition knowledge and dietary intake found that the majority of studies reported significant, positive associations, but the relationship was weak ( r  < 0.5 ) and mostly involved slightly higher intake of fruits and vegetables. The authors also noted that study quality ranged widely and that most participants were female and with a tertiary education, with limited representation of individuals from lower socio-economic status background [ 28 ]. A qualitative study with adults in New Zealand reported “the impossible rightness of healthy eating”, meaning that the people in their study knew they should be eating healthfully, but simultaneously felt that this was very difficult or impossible to do [ 29 ]. A Canadian study argued that the concept of "food literacy" needed to extend beyond nutritional recommendations and cooking lessons to fostering connections between food, people, health, and the environment to bridge this gap between knowing and doing [ 30 ].

Theoretical frameworks

Andreasen’s Social Marketing Model [ 12 ] presents behaviour change as the dependent variable, influenced by four classes of independent variables: (1) the attractiveness of behavioural alternatives, (2) community pressures, (3) the cooperation of critical supporting agencies, and (4) marketing efforts. Of specific relevance to this study, Andreasen [ 12 ] posits that a primary focus for behaviour change is on learning what people want and need rather than trying to persuade them to adopt particular behaviours or goals.

Also relevant is Community-Based Social Marketing. Community-Based Social Marketing is based on six steps. Step one is to identify the target behaviour– in this case, unhealthy eating. Step two is to understand perceived barriers and benefits to develop interventions [ 13 ]. It is this second step that we focus on in this study.

• Food choice

Decisions regarding what food to eat, when, and in what quantity are “frequent, multifaceted, situational, dynamic, and complex” [ 31 ]. A recent review and analysis of existing models of food choice integrates key elements into a single framework (Fig.  1 ) [ 32 ]. In this framework, key determinants of general food choice were identified and categorised, including Food– internal factor (sensory and perceptual features), Food– external factor (information, social environment, physical environment), Personal– state factor (biological features and physiological needs, psychological components, habits and experiences), Cognitive factor (knowledge and skills, attitude, liking and preference, anticipated consequences, and personal identity), and Sociocultural factors (culture, economic variables, political elements). According to this framework, any attempt to shift choice must consider these interrelated factors.

Conceptual model of food choice. The lines in the figure indicate the interactions between different factors [ 32 ]

Literature on perceived barriers and enablers of healthy eating

Most of the recent evidence on perceived barriers to and enablers of healthy eating focuses on particular sub-populations, such as young people with obesity, shift workers, or people with Type 2 diabetes [ 33 , 34 , 35 , 36 , 37 ], and/or a particular type of diet, such as the Mediterranean Diet [ 38 – 39 ].

Studies examining more general populations tend to focus on younger people. A scoping review of barriers to and enablers of healthy eating for young adults in Western countries, for example, identified the following barriers: male apathy towards diet; unhealthy diet of friends and family; expected consumption of unhealthy foods in certain situations; relative low cost of unhealthy foods; lack of time to plan, shop, prepare, and cook healthy foods; lack of facilities to prepare, cook and store healthy foods; widespread presence of unhealthy foods; lack of knowledge and skills to plan, shop, prepare, and cook healthy foods; and lack of motivation to eat healthily (including risk-taking behaviour). Key enablers included: female interest in a healthy diet; healthy diet of friends and family; support/encouragement of friends and family to eat healthily; desire for improved health; desire for weight management; desire for improved self-esteem; desire for attractiveness to potential partners and others; possessing autonomous motivation to eat healthily and existence and use of self-regulatory skills [ 40 ]. A qualitative study of college students aged 18–24 at one university in Hawaii, U.S., of perceived barriers to and enablers of healthy eating found the largest barriers to be nutrition knowledge deficit, peer pressure, unsupportive institutional environment, and cost. The largest enablers were nutrition knowledge, parental influence, an institutional environment with consistent healthy offerings, and social media. It was noted that several of these factors served as barriers for some participants and enablers for others, such as nutrition knowledge, parental influence, and institutional environment [ 41 ]. Another qualitative study with college students at a U.S. college found that common barriers to healthy eating were time constraints, unhealthy snacking, convenience high-calorie food, stress, high prices of healthy food, and easy access to junk food. Conversely, enablers to healthy behaviour were improved food knowledge and education, meal planning, involvement in food preparation, and being physically active. Parental food behaviour and friends’ social pressure were considered to have both positive and negative influences on individual eating habits [ 42 ]. Much of this food choice literature identified the importance of social factors and social norms [ 43 – 44 ].

Limited research exists that explores why people in a general population eat the way they do and what, from their perspective, are the barriers and enablers to doing so. From a public health perspective, such evidence is crucial for developing population-level interventions or advocating for policy change. This study aimed to help address this gap in the evidence by using a qualitative methodology to explore the eating patterns and process by which eating decisions were made amongst a general population of non-metropolitan adults in Australia. A non-metropolitan sample was chosen for several reasons. First, Australians living in rural and remote areas experience higher rates of diet-related disease when compared to urban residents, including cardiovascular disease, type 2 diabetes, high blood pressure, chronic kidney disease, and obesity [ 45 – 46 ]. Second, access to healthy food is more challenging in rural and remote Australia due to further distances from urban centres and higher prices [ 47 – 48 ]. Third, Australians living in rural and remote areas experience greater socio-economic disadvantage than those living in urban areas [ 49 ], which makes healthy food relatively more unaffordable. Finally, most qualitative research in Australia tends to be conducted with people in metropolitan areas, with less known about people living in non-metropolitan locations.

This study is part of a larger, mixed-methods study examining eating behaviours. Data collection took place in 2010. A detailed discussion of the methodology employed for the qualitative component has been published previously in a paper examining what people think of intuitive eating [ 50 ]. Other papers published from this study include a quantitative investigation of the associations between intuitive eating and indicators of physical and mental health [ 51 ], a review of the literature on the relationship between intuitive eating and health indicators [ 52 ], and an experimental study testing whether the accuracy of self-reported height and weight in surveys could be improved by changes to the question wording [ 53 ].

Study design and participants

Three group discussions were conducted with a total of 23 participants: (1) young women aged 18–24 with no children; (2) women aged 35–45 with primary school aged children; and (3) men aged 35–50 living with a partner and with pre- or primary school aged children. These three group demographics were selected to target significant age and life-stages in which shifts in eating behaviours may occur [ 54 ]. The groups were conducted in Bendigo, a regional centre of Victoria, Australia, with participants recruited from Bendigo city and outlying areas.

Recruitment was conducted by a professional recruitment agency. Participants were paid AUD70. Participants were chosen such that at least two in each group had previously been on a weight loss diet and at least two had never been on a weight loss diet; at least three in each group were “over my most healthy weight”.

All focus groups were conducted in a hotel conference room facility in Bendigo and were recorded for the purposes of analysis. The groups began with a general discussion about food choices and approaches to eating, including discussion of the factors that influenced food choices. Topics included influences on eating decisions– what, when, how much; eating patterns– when, why, what; feelings around eating; enjoyment of food/eating; and the role that healthy eating played in their decisions around food.

Data analysis

With the permission of participants, all research sessions were recorded and transcribed. Transcriptions were thematically analysed using an inductive descriptive approach [ 55 – 56 ].

This study received ethics approval from the Charles Sturt University Human Research Ethics Committee (2010/144).

The conversations about what people ate in terms of choice of food and the amount consumed were contextualised within an appreciation of participants’ living and working situations. While it was beyond the scope of this study to provide a documentation of the diets of participants, some information was provided about specific food preferences. However, the main interest was on the factors that affected their food choices.

Across the groups, there was a general and consistent belief that what one ate was affected by a range of factors, and that as a consequence, none of these participants felt that they were entirely in control of their own diets. While some of these factors were personal, others were felt to be determined by family, work and other social structures.

Participants were clear that the term, “diet”, while most obviously associated with weight loss, can be used to refer to general eating patterns or specific kinds of approaches to eating. Hence, the term, “diet” will be used in this paper to refer to the usual or regular food and patterns of eating. When the topic is related to a specific kind of diet that is being pursued for a particular purpose, this is referred to as the specific kind of diet, and when the specific purpose is related to weight loss, we have referred to this as a “weight loss diet”.

As an inductive approach was used in the analysis, we did not endeavour to match identified themes to the factors presented in the Chen and Antonelli [ 32 ] model. Instead, we discuss how our findings align with this model in the Discussion section. Seven main themes were identified, most with several sub-themes. Main themes included taste and health considerations, family factors, work and workplaces, social factors, planning and preparation, meal patterns, and perceptions of own eating.

Taste and health considerations

Across the groups, participants commonly talked about foods that they liked or did not like and suggested that food tastes and preferences were a primary determinant of their diets. In each group, there was some discussion of eating according to what one feels like at the time. However, it was apparent that this approach tended to mean that people’s eating varied widely in terms of eating healthily or otherwise. While they might experience times when they simply felt like foods that they considered to be healthy, it was apparent that these cravings were not the norm, and that some were almost surprised at the idea of desiring salads or vegetables.

Some days you feel like eating cold meat and salad for tea, or some days you’ll just eat a whole loaf of garlic bread. (Women, 18–24)

Some noted that food preferences seem to go in phases.

I’ve just gone off those. (Women, 18–24)

Participants also commonly talked about health as a factor that would influence their diet, but that they tended to wax and wane in terms of their degree of commitment to maintaining a healthy diet. Even those who reported being quite focussed on health as a motivator felt that it was quite hard to consistently maintain a healthy diet, and that there would be times when they did not feel like making the effort. Underlying these thoughts was a belief that eating healthily was hard work, and certainly harder than eating for convenience.

Mine varies between wanting to be super detox, organic; as natural as possible to, um, I’m totally energy depleted, give me some carbs. So I will, like, live a contradictory diet by having regular meals that are semi-regular, so really, really good, and then just crash and you know you get into work and you come home and you haven’t had time for a proper lunch or you didn’t, you know, take the time to prepare it and they come home after school and… well, it annoys me because I want to be consistent basically, and I want to be role model for my kids as well. (Women, 35–45) Oh, I have had…I’ll have the healthy breakfast for you know a week or two and then I think, “Oh, I’m sick of that, I’ll just go for toast. You get a bit tired of being strong and healthy. (Women, 35–45)

Some mentioned specific health concerns, including particular diseases or even injuries that affected their capacity to prepare meals.

Oh, our eating habits are very erratic at the moment because I’m not cooking because of an injury, and my husband has to cook so if he’s late home from work, usually the kids have made something for themselves, like a chicken burger or a slice of bread, or a can of spaghetti or something like that. (Women, 35–45)

Within these discussions, it was apparent that participants’ knowledge about nutrition and health varied considerably, and that their level of knowledge did tend to affect food choices. Some participants talked about the idea of balance, and of making choices to ensure a balance of food over the day or week. For some, balance was also about compensating for other aspects of life and health, such as smoking or drinking or physical activity. Some of the men, in particular, talked about doing more activity to compensate for having eaten too much or consumed too much alcohol.

For me, like if I’ve eaten too much, one night I know I’ve got this exercise the next day, so I have to go to the gym or get up in the morning and do some physical activity. (Men, 35–50) Yeah to me I was the same, I used to smoke and I still drink every now and then you know, I’ll try to keep fit and I know if I eat too much, I’ve got to try and do some exercises to balance it out. (Men, 35–50) I do heaps of exercise because I love eating… I run so that I can eat. (Men, 35–50)

Family factors

Time and convenience.

Throughout the discussions, it was apparent that food choices were substantially affected by factors associated with time and convenience. Participants talked about having busy schedules (e.g., family, work, school, sports), and that these activities had an impact on both the choice and timing of food.

Convenience, especially in terms of the time available for food preparation, was a major factor in food choices. In this context, participants referred to take-away foods, frozen or pre-prepared foods, and meals that were quick to prepare as offering considerable advantage in terms of fitting in with their lifestyles. As noted later, these factors interacted with the time of the week, so that weekdays tended to be more hectic with less time available for food preparation, while weekends commonly afforded greater choice.

Household members

Across the groups, participants reported that the choice of food that they consumed at any particular time was not always entirely up to them. Rather, what they ate at any particular meal was commonly affected by where they were eating, who else they were eating with, and other people’s food preferences. This was especially an issue for people who lived with others, most obviously those who were parents and were catering for children and spouses, but also for those who lived in shared households. In this context, the household makeup was a primary determinant of food choices and approaches to eating. This included the mix of males and females in the household as well as the age of children.

That’s me: quick and easy. And I love the chance when I can actually get a recipe, get all the, um, ingredients and make it properly, but that doesn’t happen very often. It’s just usually what’s there and what’s quick. And what everyone will eat. (Women, 35–45) Oh, yes, that’s a big one for me of having four children and a couple of fussy buggers. You do tend to stick to the things that they will eat… spaghetti bol[ognese], four times a week. (Women, 35–45) You have to cater for different tastes in the household. (Women, 35–45) There’s nothing more heartbreaking… when you do go to a lot of effort and they won’t even try it. (Women, 35–45)

In this context, catering for teenage boys was raised as a specific issue. Parents of teenage boys reported that they were often primarily driven by a need to provide filling food, and this tended to mean a reliance on carbohydrate-based meals, such as rice or pasta. Some amongst the group of men also talked about the main motivator for food choices being about filling themselves up. They would choose foods that provided bulk so that they could feel full. Certainly amongst the men, and in the context of parents talking about their sons, there was a substantial focus on the need for food to be bulky and filling.

I usually choose my food for size, value for money and something that the boys will eat. Bigger is better. (Men, 35–50) Size, you know, steak, parma, my son will eat, you know, most things, money comes into it again, but bigger is better. (Men, 35–50) I’d rather go big than fancy. (Men, 35–50) For me I’ve always just, I eat until I’m completely full, if you are breathing and food isn’t coming into your mouth, because you’ve so full, then you are not full enough, so keep eating, that’s the kind of, my whole family is the same, none of them are overweight or fat. (Men, 35–50) Every second meal is probably pasta or rice [to fill up the kids]. (Women, 35–45)

Throughout these discussions, it was apparent that some of the women who were involved in preparing family meals tended to ignore their own preferences for the sake of catering for partners and children. They believed that it was not worth preparing a different meal for themselves, and so tended to eat whatever they were preparing for others. Several of the women commented that this meant that they did not eat as healthily as they would like to. When prompted, those in the group of mothers commented that they only really enjoyed some of their meals.

Whatever’s in the fridge or cupboard. If there’s salad I’ll have salad, but if we’ve got leftovers I’ll have that… whatever I can grab. (Women, 35–45) [I enjoy] half to three-quarters [of my meals] and the rest are a bit of a chore. (Women, 35–45) We’re just eating because you got to eat to keep going, but tea time is more of an enjoyable meal. And the snacks in between are usually enjoyable. (Women, 35–45) Well, it made me realise that probably maybe it’s more complicated in bringing up children, that I really ignored my own health for quite a long time. (Women, 35–45)

Interestingly, however, some of these same participants commented that when they did have the opportunity to choose meals that were not dependent on the preferences of others, such as when they were at home on their own during the day, they commonly chose foods that were convenient, and reported that they could not be bothered preparing for themselves. They reported that they would find something that they considered simple and easy to make (e.g., leftovers; toast; cheese and biscuits).

Yeah, there are days like that, I just grab one of those [Up & Go drinks]. Um, because I’m part-time sometimes I’ll be home at lunch time and I’ll say to myself in the morning, “Oh, I’ll eat when I go home. I’ll have a good meal when I go home", but what happens is that I stay on at school longer and I’ll come home at 2:00, 2:30/3:00 and then it’s like, “I’ll wait till the kids are home, we’ll just have afternoon…or I’ll come home carb crave, you know, deprived and just…just grab some, like Cruskets or Saladas or some rubbish, a bit of cheese". (Women, 35–45) I think if I didn’t have to cook for the kids I would eat differently but, then having said that, as we’ve been talking I thought you know I don’t make the effort at lunch time, I just go by routine, whatever, and…if I’m not enjoying it I’ll just eat it because it’s there rather than spend the time to make something I really like, like vegetables or a salad. A lot of basic things. (Women, 35–45)

Those who lived with children talked about the age of their children affecting both the kind of food they ate and when they ate. In particular, those with younger children tended to report that they tried to arrange meals around reasonably set timelines. They reasoned that this structure fit in best with other patterns of their children’s day-to-day activities, especially school, sports, and sleep. It was apparent that such set structures were less important for those with older children or without children.

Price and budgets

The cost of food was commonly mentioned as a determinant of food choices. This was especially the case for those with teenage boys, given the need to provide large amounts of food. Several of the family participants talked about buying food in bulk when it was cheap and commented that this would then govern their food choices for a period of time.

I buy cereal in boxes of twenty or thirty, so if Nutrigrain is on Special for $4 a box, I buy twenty or thirty… Vita Brits I went and brought, it was $2 a box or something for Vita Brits the other day, and $2 a box for Weet Bix somewhere else, so I actually had a whole car filled with two trolleys full of Vita Brits, Weet Bix, and I haven’t brought Nutrigrain in a while, we are down to about our last three boxes, we had about forty boxes in there the other day. (Men, 35–50) We’re looking at economy; we’ve all got children. You know, we’ve got to budget. (Women, 35–45)

Work and workplaces

Outside of the home, some noted that their lunch time food choices when they were at work depended on where they were, what was available, and who else they were eating with or purchasing for. Some commented that they were not always able to take lunch with them to work, and that this, combined with where they were working, determined what they could eat at lunch time. Some commented that they worked in areas with only limited choice and some reported that they would be on the road for work and what they ate depended on which town they were visiting at lunch time. In both of these situations, participants noted that it was especially difficult to make food choices that they believed were healthy, simply because the healthy options were not readily available. Some noted that at their workplaces, a group of workers would take it in turns to decide where they would go for lunch, and therefore the individual’s choice was dependent on what that one place had available that day.

Participants also commented that their workplace, type of work, and working hours determined when they could eat. Some experienced set working hours and had little flexibility to decide when they ate, with references being made to shift work, school hours, or retail businesses with defined customer service hours. Working hours were also regarded as one of the factors that determined whether breakfast was eaten and what was eaten at the time. Some participants talked about not feeling like eating as soon as they got up, preferring to wait until sometime later to have breakfast. However, some of these people also noted that the nature of their work meant that they were unable to eat at the time that they would prefer (e.g., teachers), and therefore that they would have to have something first thing in the morning so they could last through until lunch time.

Social factors

Location of eating.

Participants consistently pointed out that eating food that they had not prepared affected their choice of foods, from the perspective of both availability and desire. For example, when eating out, participants reported that they tended to have something they wouldn’t eat at home. They were more likely to have foods they considered to be treats. Some also commented that they would choose foods at these times that were restricted at home because others in the household did not like them. A specific example was food that was provided for free, which was typically at some kind of function. Free food meant different motivations for choice. Partly this was related to not being able to be as fussy as they would be if they were providing their own food or making their own choices. Partly it was related to going for the unusual, commonly more decadent, choice. In both of the above situations (eating out and free food), some participants talked about the idea of feeling like they had to eat all that they were served so as to not waste the opportunity or their money.

Most of the time if I’ve overeaten is when we go to the buffets, where it’s all you can eat sort of thing… so I try to avoid those sort of places, because I will overeat and I feel guilty and then I’ll go out for a walk before I go to bed and then I’ll punish myself the next day. (Men, 35–50)

Other factors related to location were discussed previously under the heading, ‘Work and workplaces’.

Social and physical activities

Participants talked about a range of activities that affected both choice and timing of food. A common factor was that of physical activity, and especially in the context of organised team sports. It was noted that these activities, especially if they were during the week, often overlapped with normal eating times, and therefore that meals would need to be rearranged around the activity. With respect to sports, participants also reported that they needed to consider the impact of their meal on their ability to take part in the sport, noting that they might not have sufficient energy to play a sport if they had not eaten, but that they could not eat too soon before being active. This commonly meant that meals on these evenings were either very early or very late, neither of which was regarded as ideal, but something that participants had no control over. It was also noted that physical activity could affect the type of food chosen, specifically that they would need to eat either to provide or replenish energy.

Some of those who were parents also noted that the sports activities of their children affected their own diet, in terms of both timing of meals and choice of food. Because families were reluctant to prepare more than one meal, the whole family had to fit around everyone else’s activities.

Well we have our set days where, like Wednesday nights we have to have Mackie cheese [macaroni cheese] and nuggets, because that’s what the boys want after their swimming lesson, and sometimes I have to go to the supermarket because I haven’t got any left in the fridge, so… pasta is a bit of a staple. (Men, 35–50) Wednesday is late because I’ve got touch football, so I don’t eat dinner before going to play, I don’t want to go on a full stomach, so lunch is always bigger on a Wednesday than any other day… I hate it because one of the touch footie games isn’t till seven thirty, I hate it, because normally eating at six, there is no way I can have tea beforehand, because I’m just going to run around and get sick, so you don’t get home till… eight thirty, quarter to nine, nine if they are running late, and… yeah, pretty much [McDonald’s] or homemade pizza… because you know they only take about eight minutes in the oven.(Women, 18–24) Well whether the boys are going to be home or we know they are going to be home or one of the daughters is playing sport or I’m playing sport, it varies. (Men, 35–50)

Participants talked about a range of other social activities, such as various groups and clubs, which affected when and what they ate. While these activities might not have had the same physiological impact on food preferences and choices as sports activities, they did similarly affect when meals were eaten, which in turn affected what was eaten. For example, some mentioned after work activities, which meant that they would not get a chance to eat until late, and by then the quickest and most convenient thing to do was to buy take-away food on the way home or eat pre-prepared frozen meals when they got home.

My partner plays pool on a Monday and Wednesday night, so we always have tea a lot earlier then and cook the simple things that don’t take as long, so he can have dinner before he goes rather than buying pub meals which cost more money.(Women, 18–24)

Planning and preparation

Throughout the research, it was apparent that different people had different approaches to planning and preparing meals. The approaches tended to depend on factors such as where they lived, how they shopped, and who and how many people they were shopping for. For example, some mentioned that they lived out of town and therefore that they tended to shop less frequently but buy more at a time. Some of those who reported having large families also mentioned that they would shop in bulk. Several of these participants talked about their food shopping being driven by pre-planned meals.

Yeah and as you drift through the town you stop at the supermarket and pick up the required… it’s a half hour drive in and out, so it creates that sense of planning. (Men, 35–50) For our family… my wife actually sits down each fortnight, because we get paid fortnightly, she works full time, I’m studying full time, and working part time, five kids, the budget is not extensive, so she actually sits down each fortnight and works out what we are going to eat for the fortnight, and then goes and gets all the set ingredients for those meals, and so there’s nothing above and beyond that, now and then there might be a treat thrown in or whatever, all the stuff for the school lunches and that sort of thing. So it’s basically dependent, the amount we eat is dependent on that. She works out ok we need so much to make a meal for seven people. (Men, 35–50)

Participants’ approach to planning was also driven by factors such as their work schedules. They reported that these factors meant that they had different amounts of time available on different days of the week, and therefore that the planning and food preparation process varied according to what was possible on each day.

Oh, well, my aspiration is that I eat more healthily and more natural foods but that’s quite often sabotaged by my planning. My husband probably does want to do that as well but, um, I find it’s often, “Oh, my goodness, I’ve got half an hour to make something and there’s nothing for them, there’s nothing in the fridge, so what are we going to have. So, occasionally it’s fish and chips instead or, um, yeah, just quickly putting something together which isn’t really what I’d want to do but if I’ve done more planning in advance then…(Women, 35–45)

It was also apparent that some participants simply preferred to have a set structure to their diet, and this meant set meals and set shopping patterns.

I guess going back to the getting groceries, I tend to map my weeks out from the Sunday, buy everything for the weekend and that’s it, but I stick to the same recipe every day, so usually lunch is a wrap with ham and a certain amount of grams of tomato and cucumber… it’s just easier to stick to.(Women, 18–24) I pretty much eat at the same time every day…. 9.30 breakfast, twelve lunch, six o’clock dinner. (Women, 18–24)

By contrast, others tended to be a bit more ad hoc in terms of planning, and therefore shopping. These participants reported that they would decide what to eat each day and might quickly visit the supermarket on the way home. It was apparent during these discussions that this approach was more likely in situations in which men were more involved in day-to-day food choices.

And depending on the timing of the day, what’s happened during the day and that sort of thing, what we feel like, necessarily on the day, will be dependent on… well [my wife] either sorts it out in the morning, or puts the slow cooker on or something like that… [depending on] you know who’s going where, that day, because she’s working, at the moment, she’s teaching up at the uni so she’s there till five o’clock most nights of the week… I’ve got subjects or classes, until four or five, I’ve got one on a Monday that finishes at seven, in the evening. (Men, 35–50)

Finally, participants varied in their attitudes regarding whether they liked to have food in the freezer that could be ready to thaw and prepare, or whether they preferred to buy and eat fresh food.

Meal patterns

Timing of meals.

As noted above, participants across these groups reported that their patterns of eating, in particular the time at which they ate, were commonly governed by factors that they felt were external and therefore that they had no control over. Some mentioned that they would eat in the morning because they needed something to get through the start of the day. Even if they did not feel hungry at this time, they were aware that they would feel hungry before there was another chance to eat. From this perspective, for some people and some meals, food was about fuel. They would stock up to prevent themselves running low later on, even if they did not really feel like eating at the time. As noted above, participants in each of the groups talked about the routines and structures of their day-to-day existence determining when they could eat, and that this affected what they would eat. To some extent, they did not feel that this was an ideal approach but felt that they had limited capacity to do otherwise. Hence, in some situations, timing of eating was based on the desire to prevent later hunger, rather than as a response to current hunger.

I think, I mostly eat because, well I’m hungry and you have to, rather than oh my god that’s fantastic, and I’d love to cook it and eat it and enjoy it, I think it’s just more of a…. (Men, 35–50) You’ve got to eat, it’s fuel. (Men, 35–50) Yeah, like breakfast I wouldn’t normally eat, well I don’t enjoy breakfast, but I eat because I know, come nine o’clock, ten o’clock I’m going to be hungry I’m going to be lethargic, so I’ll force Wheeties in or some toast or… I do enjoy food but I don’t deliberately go out because I enjoy the taste or the texture or whatever, it’s more, well you have to eat. (Men, 35–50) If I know I’m travelling and I have to skip lunch or something, I’ll probably have a bigger, breakfast than normal, but if I know I’m going to have access to lunch, then no problem, I’ll just have something to keep me, just to get me there, rather than, cook up the big pancakes and the bacon and eggs, you’ve got to taste nice, I’ll be just a couple of bits of toast just to keep the hunger away. (Men, 35–50)

Standard and variable meals

Participants were prompted to talk about which meals were standard and which were more variable. For most participants, breakfast, lunch, and dinner were each affected by different factors, as were weekday and weekend meals.

Weekday vs. Weekend

Across the groups, weekdays tended to involve more structure, and therefore the weekday meals also tended to involve more structure. This appeared to be most obviously true for those with younger (primary school age) children but was also the case for those with older children and those who did not have or live with children. In other words, the typical weekday involved a degree of externally imposed structure (e.g., working hours: travel times: sporting activities), and for those who lived with others, this was further impacted by the need to coordinate times. For some, food choices tended to be group choices rather than individual choices, especially during the week. By contrast, weekends tended to involve more flexibility of schedules, and as a consequence, more time could be spent in food preparation and decisions about meals were less time and convenience based.

I cook…during the week is when I have…we have set meals and then weekends when I don’t cook… [during the week] we have a meal together every night…at the moment they’re all young so no-one’s out doing things. Yeah, I’m cooking a meal every night, but on the weekend it’s more relaxed, it’s like, “get your own". (Women, 35–45)

Breakfast, lunch, and dinner

While there were some exceptions across these groups, breakfast tended to be a more standard and regular meal. To a large degree, this was because time was a major issue, as breakfast needed to be consumed at a set time and in a brief period of time, typically while the family was getting ready for the day’s activities. Interestingly, some participants suggested that they did not experience the same need for variety when it came to breakfast as they did with other meals, commenting that they were happy to have the same thing day after day. As noted above, weekend breakfasts were commonly quite different from weekday breakfasts, being more about choice, enjoyment, and variety than time and convenience. Weekend breakfasts also tended to be more of a family event than simply eating something before the day’s activities.

However, some participants in each of the groups reported that they did not always eat breakfast, typically feeling that it was too early to eat. Amongst this group, some reported having breakfast some days and not others. These people reported they would wake up and decide whether they felt hungry, and if so, what they felt like eating.

It was also common for some to talk about breakfast being a time when they were more in touch with what they felt like eating, or whether they felt like eating at all, although the breakfast choices tended to be quite narrow (e.g., toast: cereal: fruit). Similarly, some reported that they had two or more standard breakfasts, and that they would choose on the day what they “feel like".

I just wake up and whatever I feel like… like if I wake up hungry, then I’ll go and have some, if I feel like cereal, then I’ll have cereal… and if I do sport in the morning, then I usually have toast… I just feel like toast after a run. (Women, 18–24) It can range from cereal or toast in the morning, my wife makes her own sourdough, so we have that in the morning, which is really good… depends on the mood, because what happens, if the kids wake up, it’s cereal, and I’ll do three bowls at the same time, one, two, three… If everyone is still sleeping, I’ll make my toast and wrap it up and eat it on the way to work so… it just depends on how you feel. (Men, 35–50)

As discussed earlier, lunches tended to vary according to where people were and what they were doing. Convenience was also a key driver for lunch time choices. For those not working during the day, lunches were commonly leftovers from the night before or simple snacks. The mothers talked about not really putting aside time or food for lunch, and often skipping it or simply not getting around to it. If they were not at home, lunch would depend on where they were and what they were doing. For those who were working, there was also the issue of choice being affected by the group, as was previously documented.

Dinner was generally regarded as the most important meal of the day and was afforded more effort and planning. All of the factors discussed previously as influencing food choices tended to be applied to dinners. Most obviously, weekday dinners tended to follow somewhat more of a routine, while there was greater variation and potentially a broader choice on the weekends.

Perceptions of own eating

Participants were asked to comment on how they felt about their diets and their approach to eating. The typical response was to say that it was mostly okay but could be improved. There was a tendency for participants to comment that they ate too much of some foods that they perceived as not good foods, and/or not enough of other foods that they perceived as good foods. Interestingly though, participants commonly responded to these questions with a range of justifications for the shortcomings that they perceived in their diets. For example, some would claim that it was okay that they ate so much high fat foods because they did a lot of exercise; others would report that it was okay because they had a “good metabolism".

Yeah I’m pretty happy with mine [diet], I think I drink too much Coke, I’m really addicted to Coke, but apart from that I’m pretty happy with it. I really love my vegetables, so we eat a lot of vegies… maybe I do justify it, but I really do think that I eat alright. (Women, 18–24) I’m so lucky I’ve got a really good metabolism, and also people will be like, I’ve got a block of chocolate down to fifteen minutes, because if I’ve got a five-hour shift, I only get a few minutes, and they are like but that’s so bad for you, yeah but it’s like calcium… and then if I’m at uni and I want to be healthy, I’ll have like steamed dim sims instead of fried dim sims… so I can justify it all in my head, and I know that it’s not right.(Women, 18–24)

Amongst the younger women in particular, some felt that as long as they were happy with their weight, their diet was all right.

Yeah that’s right, I’ll go for a run, and I do exercise, I don’t put on weight, I don’t, but I do exercise, but I think I do justify my bad eating because I don’t put on weight. (Women, 18–24)

Participants were prompted to discuss whether they ever ate too much, and if so, in what circumstances. Generally, participants felt that they were aware when they were eating too much, but as with comments about their diets in general, they tended to have reasons for doing so that made it acceptable in the circumstances. Commonly, participants reported that when they went out for a meal they would clean their plates even if they were full. They reported that serving sizes tended to be large and that they did not want to leave food if they had paid for it. A specific example of this was the ‘All you can eat’ deals. In the context of these discussions, there was some awareness of the idea of stopping before you feel full, but it was apparent that the actual practice of this idea was less than the knowledge. In essence, participants experienced far more benefits to eating till they were full than disadvantages.

A [chicken parmigiana] and a steak and it’s huge, I’ll, because it’s there, I’ll just keep going until it’s finished… half way through I’ve probably had enough, I’ll be thinking I’m not hungry anymore, but I’ll just keep going. (Men, 35–50). And because you’ve paid for it. (Men, 35–50).

Overall, these findings support Sobal and Bisogni’s [ 31 ] contention that food choice is multifaceted, situational, dynamic, and complexx. However, some components of their model received more affirmation than others. A key overarching theme from the findings was the strong and pervasive impact of external forces, or at least the perception of these forces, on what and when food is eaten. Although taste and preferences for particular foods, as well as health considerations, were mentioned, often as competing considerations [ 57 ], most of the discussion was about the impact of outside forces on food choice. These included family, work, and social structures, and the expectations (or perceived expectations) of family members, colleagues, friends, and others. According to Chen and Antonelli’s [ 32 ] food choice framework, these largely fall into the category, Food-external factors and, in particular, the Social environment sub-category.

The knowledge that one should be practicing healthy eating, which falls under the Framework’s Cognitive factor category, while seen as an aspiration by most participants, was often viewed as unrealistic, trumped by the need and/or desire for convenience, which might be considered a combination of Food-external factor: Social environment and Personal-state factor: Psychological components, in the Framework. Mete et al. [ 58 ], in a qualitative study with adults aged 25–58, also concluded that healthy food choices were important but not a daily priority, and that healthy eating information was known but viewed as difficult to apply to everyday life. Other research has noted the importance of convenience in food choice [ 59 – 60 ]. Jabs et al. [ 61 ], for example, in a study with low-wage employed mothers, found that most expressed feelings of time scarcity and that, while they prioritised feeding their children, they also wanted to complete meals quickly to move on to other tasks. Bava et al. [ 62 ] found that, while the working women in their study said they would ideally choose healthier food, the reality of their lives demanded convenience in food provision to minimise time and cognitive effort.

Other categories and sub-categories of Chen and Antonelli’s [ 32 ] framework, while less discussed by participants, were mentioned. Dearth of food choices when travelling for work, for example, might be categorised under Food-external factor: Physical environment. Personal-state factor: Habits and experiences was demonstrated by discussions around eating the same breakfast every day [ 63 ]. Personal-state factor: Physiological needs came up in discussions around needing to eat even if one didn’t feel like it in order to not go hungry later in the day, or with men's and boys' needs to eat bulky food to fill up. Desires or cravings for less healthy foods (Food-internal factor) were also perceived as working against the ideal of healthy eating.

Although our study did not seek to explore gender or life stage differences in food choice, several tendencies were observed, which future research may want to further explore. In particular, the women with children discussed food choice largely in terms of what others in the family– i.e., their partner and children– liked and which fit in with their schedules. The men, on the other hand, all of whom had children, more often spoke of eating to fill themselves up, or ‘food as fuel.’ Newcome et al. [ 64 ], in a study with partnered men, concluded that men in families displayed unease at expressing enjoyment in food (‘Men downplayed their hedonic consumption’), and instead spoke about food as being largely functional as fuel for their bodies. If these gender and life stage differences prove to be robust, this may suggest quite different public health messaging targeted to women with children, men with children, and those without partners or children. Much of the literature on food choice focuses on women, who continue to be more involved with family food decisions than do their male partners [ 65 ], and thus more is known about women’s food choices.

The findings from this study suggest that public health efforts aimed at educating and encouraging individuals to eat more healthfully are, on their own, insufficient to significantly improve healthy eating at a population level. These public health efforts need to be delivered in conjunction with legislation that removes structural barriers to promote healthy eating.

The vast majority of our participants knew they should be eating more healthfully but felt largely unable to do so. Instead, some of these identified structural barriers must be addressed. In particular, improvements to the food environment are needed, particularly in rural areas where distances are greater [ 66 ]. Greater provision of quickly preparable, accessible, and reasonably priced food, for example, would assist with some of the time barriers. More workplaces could consider providing free and accessible fruit or other healthy snacks for their employees [ 67 ]. Children’s sporting facilities could ensure that healthy foods are available [ 68 ].

As with any study, this one has several limitations. First, the focus groups were conducted in 2010; since then, various changes have occurred in the food environment that are potentially relevant to food choice and the findings from this study. These include the rapid proliferation of online food delivery services. There is evidence, for example, that such services increase the geographic access to foods prepared away from home and that these foods tend not to meet healthy eating recommendations [ 69 ]. There has also been a significant increase in the production and promotion of convenience and ultra-processed foods over this time [ 70 ]. In addition, the marketing of fast food, beverage, and snack brands has expanded via social media [ 71 ], with evidence that digital food marketing and social media can influence food choices, preferences, and consumption [ 72 ]. Therefore, our findings should be interpreted within this context. Future studies are needed to determine the extent to which the various barriers and enablers to healthy eating identified in this study continue to hold.

Second, the findings of this study are based on only three groups of people with a total of 23 participants, all of whom live in or near a rural region in Victoria, Australia. However, one would assume that many of the discussions around personal, family, and workplace factors would translate beyond this specific group of people, and particularly to other people living in Western countries in non-metropolitan areas. A third limitation of this study is that neither actual dietary intake data nor measures of nutritional knowledge was collected from participants, which would have allowed comparison of what participants discussed against more objective data. However, the focus of this study was on understanding how people think about their eating behaviours and perceptions of motivations and barriers to eating more healthily, rather than on whether their self-reports are factually correct. Moreover, we know that food diary data is often inaccurate [ 73 – 74 ]. Fourth, a single researcher conducted the focus groups and analysed the data. However, with thematic analysis, coding quality is not dependent on multiple coders [ 75 ]. The results were discussed with the other co-authors and the first author also read the transcripts. All three authors agreed with the findings.

Despite a plethora of information regarding how people should eat, surprisingly little research explores how and why people eat the way they do– particularly in a general population. Based on findings from focus groups with a range of participants from a rural region of Victoria, Australia, we found that, although decisions regarding when, what, and how much to eat are determined in part by taste preferences and health considerations, they are heavily influenced by a host of other factors. Moreover, many of these factors exist outside the control of the individual, including other household members’ preferences, family activities, and workplace and time constraints, as well as convenience and price. It appears, therefore, that education alone will not solve the problem of unhealthy eating. People want to eat healthier, or at least know they should eat healthier, but it’s all just too hard. It would seem, then, that a key to improving people’s eating behaviours is to make it easy to eat more healthfully, or at least not much harder than eating poorly.

Data availability

De-identified transcripts will be considered by the corresponding author upon request.Due to the nature of the data (i.e.,dSAZX a small number of focus group participants from a single geographic area), it is very difficult to anonymize the data. In addition, the participants did not provide explicit consent for the transcripts to be shared publicly.

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Acknowledgements

We would like to thank the Social Research Centre for conducting the focus groups at cost. We would also like to acknowledge the focus group participants, who generously shared information and insights about themselves and their families.

This study was funded in part by a Research Development Fund from Charles Sturt University. In addition, The Social Research Centre provided an in lieu contribution of four hours per week of author Van Dyke’s time to work on this project.

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NV conceived the project and wrote the main manuscript text other than the Results section. MM conducted the analysis of data and wrote the Results section. All authors reviewed the manuscript.

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Van Dyke, N., Murphy, M. & Drinkwater, E.J. “We know what we should be eating, but we don’t always do that.” How and why people eat the way they do: a qualitative study with rural australians. BMC Public Health 24 , 1240 (2024). https://doi.org/10.1186/s12889-024-18432-x

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Overlooked by the obstetric gaze – how women with persistent health problems due to severe perineal trauma experience encounters with healthcare services: a qualitative study

• Katharina Tjernström 1 ,
• Inger Lindberg 1 ,
• Maria Wiklund 2 &
• Margareta Persson 1  

BMC Health Services Research volume  24 , Article number:  610 ( 2024 ) Cite this article

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During the first year postpartum, about 25 per cent of Swedish women with severe perineal trauma (SPT), i.e., a third- or fourth-degree perineal laceration at childbirth, are unsatisfied with their healthcare contacts. Further, there is a lack of research on the more long-term experiences of healthcare encounters among women with persistent SPT-related health problems. This study explores how women with self-reported persistent SPT-related health problems experience their contact with healthcare services 18 months to five years after childbirth when the SPT occurred.

In this descriptive qualitative study, a purposive sample of twelve women with self-reported persistent health problems after SPT were individually interviewed from November 2020 – February 2022. The data was analysed using inductive qualitative content analysis.

Our results showed a paradoxical situation for women with persistent health problems due to SPT. They struggled with their traumatised body, but healthcare professionals rejected their health problems as postpartum normalities. This paradox highlighted the women’s difficulties in accessing postpartum healthcare, rehabilitation, and sick leave, which left them with neglected healthcare needs, diminished emotional well-being, and loss of financial and social status. Our results indicated that these health problems did not diminish over time. Consequently, the women had to search relentlessly for a ‘key person’ in healthcare who acknowledged their persistent problems as legitimate to access needed care, rehabilitation, and sick leave, thus feeling empowered.

Conclusions

Our study revealed that women with persistent SPT-related health problems experienced complex health challenges. Additionally, their needs for medical care, rehabilitation, and sick leave were largely neglected. Thus, the study highlights an inequitable provision of SPT-related healthcare services in Sweden, including regional disparities in access to care. Hence, the authors suggest that Swedish national guidelines for SPT-related care need to be developed and implemented, applying a woman-centered approach, to ensure equitable, effective, and accessible healthcare.

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Intrapartum and postpartum healthcare should ideally be high-quality, evidence-based, and a positive experience stemming from woman-centred care with a holistic approach based on human rights [ 1 ]. This approach acknowledges each woman’s articulated needs and expectations in her social, emotional, physical, spiritual, and cultural context [ 2 ]. Nevertheless, during the first year postpartum, about one in four Swedish women with severe perineal trauma (SPT) [ 3 ], i.e., a third- or fourth-degree perineal laceration involving the anal sphincter muscle and anorectal mucosa at vaginal childbirth [ 4 ], are dissatisfied with their care and one in three women report ongoing health problems related to their SPT. Women with SPT may suffer from various physiological and psychological consequences such as pain [ 5 , 6 ] , incontinence [ 7 ], defecation problems [ 8 ], vaginal prolapse [ 5 ], sexual dysfunction [ 9 ] or depression and anxiety [ 10 , 11 , 12 ].

Reducing physical symptoms is essential to support emotional and social recovery after any perineal trauma [ 13 , 14 ]. Women with SPT emphasise that professional, competent, and respectful attitudes from healthcare professionals (HCPs), including individual and adapted information, facilitate, and promote their postpartum recovery. Thus, the HCPs’ competence and knowledge of treatment options is a prerequisite for women to access needed care [ 15 ]. An additional problem in the Swedish context is the lack of national recommendations or guidelines, which enables each of the 21 regions to develop own regional and local guidelines. An audit of the existing regional and local guidelines for prevention and care of SPT shows an unexpected diversity or lack of evidence-based recommendations [ 16 ]. However, dissatisfaction with access to healthcare has been expressed by women with persistent, i.e., beyond one year postpartum, SPT-related health problems [ 6 , 17 ]. Furthermore, women criticise inadequate or absent support [ 6 , 18 ], poor information and education [ 6 , 10 , 18 ], and lack of follow-up care regarding SPT and its potential psychological and social consequences [ 6 , 10 ]. Postpartum care focuses more on the baby than the mother’s well-being [ 18 , 19 ]. Also, the available treatment options are perceived as limited and outdated by those with access to needed care [ 17 , 18 ]. Moreover, women with SPT describe that some HCPs tend to normalise their SPT-related problems [ 10 , 17 , 18 , 19 , 20 , 21 , 22 ], and women are met in unprofessional and disrespectful ways [ 17 , 23 ], where HCPs are perceived as ignorant, nonchalant, and questioning women’s symptoms [ 10 , 17 ]. Previous research [ 24 ] indicates an institutional objectification of women with SPT by Swedish healthcare providers hindering access to healthcare, sick leave, and occupational rehabilitation after SPT. In contrast, women also report being acknowledged and liberated when HCPs have a professional and empathic approach and provide continuity of care that enables access to care for persistent SPT-related health problems [ 17 , 18 , 19 , 25 ]. Thus, several women who sustained an SPT during childbirth do not experience access to needed and necessary care, a fact that needs further exploration.

Globally, sexual and reproductive health and rights (SRHR) are crucial for individual health and gender equality [ 26 ]. Current issues within SRHR and midwifery are controlled by the institutional power in health institutions, i.e., medical power [ 27 ], connected to the still-existing economic and educational disadvantages of women globally, which are also feminist issues [ 26 , 28 ]. As midwife stands for ‘with woman’ [ 28 ], gender or feminist approaches are used in advancing midwifery theory [ 27 , 29 ] and various aspects of SRHR topics such as breastfeeding promotion [ 30 ], birth plans [ 31 ] and attitudes towards contraceptives [ 32 ]. In midwifery and feminist approaches, the biological material body and the socially constructed gendered body are viewed as intertwined [ 33 ]. Moreover, midwifery care is recommended to be woman-centred [ 1 , 2 ], focusing on the individual woman’s needs and transferring control from the institution to the woman herself. However, despite the different organisations of sexual and reproductive healthcare between countries, international research shows similar results regarding women’s diverging experiences with postpartum SPT-related healthcare [ 6 , 15 , 17 , 18 ].

In sum, there is growing evidence showing that many women with persisting health problems caused by SPT are often, but not always, met with mistrust and ignorance when seeking care for their problems. Even though there may be national, regional, or local protocols or guidelines for care after SPT, women with persistent SPT-related problems still raise their voices about the difficulty of getting access to competent quality care. This indicates a potential gender bias [ 34 ] and a need for gender theoretical perspectives in midwifery [ 28 ], as utilized in this study. Additionally, few studies explore the care-seeking experience among this group of women in a longer time perspective after childbirth when the SPT occurred.

The aim of this study is to explore how women with self-reported persistent SPT-related health problems experience their contact with healthcare services 18 months to five years after childbirth when the SPT occurred.

Study design and context

The present study is part of a larger research project investigating the long-term consequences of SPT on quality of life, working life, and healthcare contacts. This study had an inductive qualitative interview study design applying qualitative content analysis to analyse data [ 35 , 36 , 37 ]. This method searches for patterns, e.g., by identifying similarities and differences in the data. The researchers obtain an in-depth understanding of the studied phenomenon through abstraction and interpretation [ 36 ]; thus, an appropriate method to apply to capture women’s experiences of their healthcare encounters when seeking medical help and support. Throughout the research process, the recommendations for qualitative research according to ‘Consolidated criteria for reporting qualitative research’ (COREQ) were followed [ 38 ].

Sweden has 21 partly independent regions primarily responsible for providing healthcare services to the population. Healthcare services are tax-funded, and the regions have extensive autonomy to decide upon the healthcare services within each region based on the frameworks of the Health and Medical Service Act [ 39 ]. Additionally, within the Swedish social security system, 480 days of paid parental leave are allocated to each child in Sweden and can be utilised by their legal guardian(s) until the child is twelve years old. Of these 480 days, 60 days are specifically assigned to each parent, and the remaining days are split between parents as desired. The financial compensation is based on the parent’s income and is financed by taxes [ 40 ].

In Sweden, midwives are the primary care providers to women with normal pregnancies, births, and postpartum care. In case of complications to pregnancy and childbirth, midwives collaborate with other medical professionals, especially obstetricians. For example, midwives suture first- and second-degree perineal lacerations, while obstetricians are responsible for all SPT repairs [ 41 ]. Generally, in Sweden, women who sustain an SPT during childbirth are offered a check-up with the obstetrician responsible for the repair before discharge and should also have a follow-up with an obstetrician or sometimes a physiotherapist within the postnatal period. Thereafter, women with no mayor initial healing problems are advised to contact relevant healthcare services if any health issues related to the SPT should arise in the future. Women presenting with complicated healing are treated accordingly. Additionally, women with second- to fourth-degree perineal lacerations are assessed with questionnaires three times during the first year postpartum by the National Perineal Laceration Register. However, there are no recommendations in Sweden for prolonged check-ups for women with SPT after the postnatal period and no guidelines on organised check-ups for women with prolonged symptoms due to SPT exist [ 42 , 43 ].

Women with persistent SPT-related health problems and characteristics were purposively recruited to achieve a heterogeneous sample reflecting multiple experiences. An overview of inclusion and exclusion criteria can be found in Table 1 .

The closed Swedish Facebook community ‘Förlossningsskadad? Du är inte ensam!’ [‘Injured at childbirth? You are not alone!’] functioned as a recruitment platform for a national sample of women reporting persistent SPT-related health problems. The Facebook community is secluded to women with SPT and started in 2014. During the data collection period (Nov 2020 – Feb 2022), the group had over 7,600 members; today, the community has grown to include over 9,500 members [ 44 ].

In late November 2020, the administrators of the Facebook community pinned a digital poster with study information and a link to the study homepage in the group feed. The study homepage contained written information on the research project and contact details for the research group if any women wanted additional information about the study. Interested potential participants contacted the research group via a contact form on the homepage, and the first author (KT) confirmed that the potential participants met the inclusion criteria via telephone. Thirteen participants from different parts of Sweden showed interest in participating and left their contact information. One woman never responded to our efforts to reach her. The remaining twelve women fulfilled the inclusion criteria and were invited to an interview. Before the interview, the women answered a digital survey on background data (such as demographic data, education, employment, sick leave, and childbirth history) distributed via REDCap ® , a web-based application to create secure online questionnaires and research databases [ 45 ]. The interviews were finalised in February 2022.

Data collection

We collected data via individual open-ended interviews [ 46 ], supported by a semi-structured interview guide [see Additional file 1 ]. The interview guide, developed by KT and MP with input from MW and IL, was based on literature reviews, our awareness of gender as a social construct [ 33 ], and the clinical pre-understanding within the research group. After a pilot interview conducted by KT (not included in the data), minor adjustments were made to the interview guide. The final interview guide covered the topics of everyday life experiences, work, and general functioning. However, despite the mentioned interview topics, the emergent study design and the ability to speak freely about what was perceived as important for their daily functioning, the contacts with healthcare services was brought up in vivid and extensive narratives by all participants as part of their descriptions of their challenges in everyday life and their ability to function at work. Hence, the experiences the women made of the healthcare services played an important role for the women in their daily management of SPT-related health problems.

As data collection occurred during the COVID-19 pandemic, all participants were interviewed digitally via Zoom ® [ 47 , 48 ]. With the participant’s consent, the interviews were audio-recorded via Zoom ® and a separate digital recorder (as backup). Any Zoom video files automatically generated were deleted directly after the termination of the interview to protect participants’ identities. The first author interviewed all women; in two interviews, co-authors (IL or MW) also attended. The authors had no professional or personal affiliation with the enrolled participants . Detailed interviews ranging from 29 – 112 minutes (median: 61.5 minutes) gave extensive data. All interviews were performed in Swedish and transcribed verbatim. After that, the first author validated the transcripts for accuracy by reviewing the text while listening to the recordings.

Authors’ pre-understanding and theoretical positionality

The research group comprises three midwives (KT, IL, MP) and one physiotherapist (MW). We all have extensive professional experiences from clinical practice in primary and in-patient care, where three authors (KT, IL, MP) have specific professional experiences of caring for women with SPT. Additionally, we are women, feminists, and mothers with various birth experiences. Further, the group holds expertise in gender studies and qualitative research within midwifery science, such as perineal trauma and medical sociology. Hence, we stem from a social constructivist research standpoint and utilise ourselves as co-constructors in the analysis process. As feminist researchers, we apply a gender theoretical lens to the data.

Data analysis

The interviews were analysed using qualitative content analysis with an inductive and stepwise approach focusing on the manifest and latent content [ 35 , 36 , 37 ]. The interviews, transcripts, and analysis steps were performed in Swedish.

The analytical procedure started with reading the transcripts multiple times while highlighting text, meaning units, with content relevant to the aim of this study. Then, identified meaning units were condensed, focusing on preserving their core meaning and labelled with manifest codes [ 35 , 36 , 37 ]. Initially, KT coded one interview and triangulated those codes with the principal investigator (MP). KT then coded the rest of the interviews. In the next step, similar codes were clustered, forming subcategories based on the manifest content. Moving towards an interpretation of the content, categories were created by the abstraction of subcategories. This was done by KT and MP separately and then triangulated to identify significant concepts. Next, the preliminary categories and subcategories were triangulated with the whole research group until a consensus was obtained. To answer the question of ‘what?’ and ‘how?’ within the data, the latent content and thread of meaning were identified by clustering and abstracting the emerging findings to form subthemes and a theme [ 36 , 37 ]. The emerging findings were also peer-reviewed and discussed at a research seminar. The finalisation of the analysis resulted in an overarching theme and four subthemes. The translation of categories, subthemes, theme and inserted citations from Swedish into English was performed as a last step. The translation and choice of words were discussed between authors (all knowledgeable in English) to reach a consensus and minimise translation bias.

During the coding process, the researchers used MAXQDA ® [ 49 ], a software for organising, transcribing, analysing, and visualising qualitative research data, and Microsoft Excel ® [ 50 ] as aids to organise the codes.

Demographics of included participants

The background characteristics of the twelve participants in the final sample are presented in Table 2 .

The participants identified themselves as cis women, i.e., their gender identity matched their sex assigned at birth [ 51 ], and are thus referred to as ‘women’ in this paper. All women were in a partner relationship. The women reported a broad spectrum of physical and phycological health problems following the SPT at childbirth, e.g., urine or anal incontinence, pain in the lower abdomen, sexual dysfunction, and depression. Thirty per cent of the women had full-time employment, and the proportion of parental leave varied from 12% to 100% (three women had an ongoing parental leave with subsequent children at the interview). Further, 60% of the women had a sedentary occupation. Five women had been on sick leave after reconstructive surgery, and five reported sick leave for other reasons than their SPT.

The analysis resulted in one theme, ‘Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body’, with related subthemes ‘Questioning whether it’s all in my head’, ‘Fighting persistently for access and legitimacy in no (wo)man's-land’, ‘Facing multidimensional losses when no help in sight’, and ‘Depending on other’s advocacy to navigate an arbitrary system’. An overview of the findings is presented in Table 3 . The findings are presented as an overarching theme and thereafter, the related subthemes and categories. Citations from the participants illustrate the findings. All women have been allocated pseudonyms in the result presentation.

Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body

The latent theme ‘Overlooked by the obstetric gaze – living the paradox of a normalised but traumatised postpartum body’ represented the women’s experiences of healthcare encounters covering HCPs’ diminishing attitudes towards women’s persistent SPT-related health problems and the women’s difficulties accessing healthcare and sick leave. We interpreted that the women were assessed by the HCPs’ ‘obstetric gaze’, i.e., a medical gaze in postpartum healthcare normalising their persistent health problems and judging the women’s lower abdomen as ‘fine’ by their looks. The obstetric gaze put the women in a paradoxical situation where HCPs normalised tangible symptoms to be a natural part of childbirth. With no medical legitimacy of the health problems, the women also felt labelled as ‘hysterical’ (exaggerating health problems) by the HCPs. As a result, on the one hand, they had to continue facing persistent and tangible health problems such as incontinence, pain or prolapses. On the other hand, no acknowledgement by HCPs of their health problems led them to question whether their problems were merely a product of their imagination and, thus, only existed ‘in their head’. The theme also comprised women’s struggle for legitimacy in a gendered healthcare system - a no-(wo)man's land. They experienced that healthcare services and social insurance systems were challenging to access and demanded a tenacious and extensive fight to obtain legitimacy for their health problems. Consequently, the women had to put up with neglected healthcare needs, negatively impacting their physical and emotional well-being, and financial and social status when no medical help or rehabilitation was available. However, some women had encountered an HCP who was empathic and understanding, hence not guided by the obstetric gaze. Such encounters legitimised persistent problems and were crucial for accessing needed care, sick leave, and rehabilitation.

Questioning whether it’s all in my head

The subtheme ‘Questioning whether it’s all in my head’ focused on the women’s experiences of facing ignoration and no confirmation of perceived health problems and thus being labelled as a hysterical woman. The related categories referred to a normalisation process that the women experienced in their encounters with HCPs, which made them question their bodily perceptions. Furthermore, the women felt accused of exaggerating symptoms because their persistent SPT-related health problems did not match HPCs’ views of acceptable postpartum symptoms. Thus, it could be understood that the women found themselves in a paradox of suffering from tangible physical consequences after SPT, which were normalised by HCPs and their ‘obstetric gaze’.

Facing HCP's ignoration of perceived problems

The women experienced the HCPs defining their persistent health problems after the SPT as ‘normal’. The HCPs assured the women that their problems would disappear with time or that transient motherhood-related aspects, such as breastfeeding or fragile vaginal mucosa, were the cause of the problem. One woman expressed:

“Then I felt, ‘It should not feel like this; this is something wrong’, and I sought medical attention and was seen by multiple physicians […] They thought my vaginal mucous membrane was not ready for intercourse. I was still breastfeeding, so they thought I should stop breastfeeding. Then maybe the mucous membrane would be restored, which was causing me the pain. I was not listened to at all. I was treated very poorly by one physician in particular, and despite second opinions and so on, nobody… nobody took me seriously.” (Linda)

Consequently, the women perceived that their concerns were ignored. They also learned that the HCPs saw their prolonged physical problems after SPT as an inevitable part of childbirth, which the women should accept. One woman resigned:

“But then [the physician] says something like this: ’Well, that's completely normal’, but I felt like, ‘Yes, but it doesn't feel normal'.” (Emma)

After the genital and pelvic floor examinations, the HCPs often guaranteed the women that ‘everything looked fine’, i.e., reinforcing the normality of the genital area. Although the women described to the HCPs that they struggled with SPT-related problems, their concerns were met with a comment on the physical appearance rather than a comprehensive examination of the pelvic floor's functionality.

One woman responded:

“They think ‘everything looks fine’ and ‘everything looks good and repaired’. I still have problems. I was also referred to a surgeon, who did a rectoscopy, and ‘it looked so nice’. Then, I was referred to a urotherapist to learn how to pinch my muscles because ‘everything would be so good’. She helped me get a second opinion in XX [town], where they discovered that there was still damage." (Jin)

Another woman expressed:

”I couldn’t care less what it [genital area] looks like. Nobody will be down there watching. I only need it [genital area] to function as intended.” (Anna)

Consequently, the women felt ignored and unheard in their contact with healthcare services. They perceived that HCPs did not listen to them, leaving them feeling invisible, sometimes even having severe health problems.

“I was hospitalised with sepsis before someone listened to me.” (Josefin)

Being labelled as a hysterical woman

The women also experienced being labelled as the ‘hysterical woman’ who exaggerated their persistent symptoms and had mental health problems. The women described how the HCPs accused them of imagining their SPT-related health problems. One woman indignantly revealed that the HCP she encountered said, 'These problems only exist in your head’ (Joanna), i.e., suggesting that the perceived symptoms did not exist and rejecting the health concerns. Hence, this attitude made some women believe their problems were a product of their imagination and sometimes made them even question their sanity.

Moreover, the HCPs’ condescending attitudes towards the women made them feel dismissed and devalued. For example, the women shared that HCPs laughed at them or were rough or cold during the examination. Moreover, HCPs expressed that they had ‘seen worse’ (Amanda). Some women also conveyed that they were advised ‘to drink some wine to feel better’ (Elin) when discussing painful intercourses due to their SPT-related health problems.

“You are constantly dismissed, ‘No, but everything looks fine, you have no problems’. Then you start to think you’re imagining things. And then you may not dare to talk about the injuries.” (Jin)

Fighting persistently for access and legitimacy in no (wo)man's-land

The subtheme ‘Fighting persistently for access and legitimacy in no (wo)man's-land’ referred to the women’s experience of gender constructs related to inaccessible healthcare services and their often year-long struggles to access this gendered healthcare and linked social insurance systems. The difficulties in accessing care created negative attitudes towards the healthcare services, making the women wish for general improvements in women’s healthcare.

Struggling to access the gendered healthcare and social insurance systems

The women pointed out that after giving birth, they needed more extensive information on their injury, precautions, available help (follow-up care or re-operation), and sick leave. To overcome the lack of required information, they had to request or actively search for it on their own, which also led to uncertainty about where and when to seek further help if needed.

“I was sent home with a brochure and a pat on the shoulder.” (Amanda)

The women also experienced a lack of adequate healthcare services targeted at their SPT-related health problems. For example, many women did not have access to a pelvic floor clinic or had to travel long distances to see specialists. Hence, their place of residence decided the quality of care the women received. Moreover, some women problematised the organisation of postpartum care as they missed out on follow-up care and even, in some cases, were denied follow-up care or referrals to specialised care were lost. As a result, some women had no opportunity to talk to the operating physician or experienced no follow-up care, although they requested it.

“They said it can take up to a year to get better. So, when that year had passed, and before starting to work again, I called different places in the hospital and asked: What should I do now? […] It took several months before I got an appointment with the surgeon for an assessment. And then I had to get a second opinion. So, it took like seven months before I got an appointment at [a specialist clinic].” (Hawa)

For the women, access to healthcare services, sick leave certificates, and HCPs’ dismissive attitudes were perceived as gender-related, i.e., difficulties in obtaining help from women’s healthcare services would not exist if the services were more women-oriented. One woman illustrated this by expressing: ‘If men gave birth to babies, the situation would not be like this’ (Joanna). Moreover, they perceived that women’s healthcare services were not prioritised. They explicitly stated that the absence of sick leave certificates and benefits was related to their gender. The women were expected to cope without sick leave benefits because vaginal and perineal lacerations of any scope were viewed as a natural part of childbirth, a normal process of a woman’s body. Thus, sequelae thereof did not exist or were taboo in society.

“Everything that happens during and after childbirth and related injuries has been a taboo discussion topic, so it has been completely ‘normal’ to suffer from persistent pain.” (Anna)

“I have applied for compensation from the national patient insurance. I got rejection after rejection; nothing has gone wrong. I was told: 'You simply must expect these things in childbirth. And a caesarean section is not less risky'.” (Hawa)

Thus, the women argued that society and the government did not invest needed resources in women’s healthcare. In addition, those few women receiving a short period of sick cash benefits had it immediately after giving birth or after re-operation, but not for prolonged problems. Further, the women noted that they were not offered sick leave certificates due to persistent physical SPT-related health problems but instead due to mental issues, such as depression or anxiety.

“I've heard about women who have been mentally unwell and have hurt their children. So maybe physicians get cautious and put women on sick leave if they say, ‘I'm not feeling mentally well’. Then they act quickly because they think it's so important. But they don't think about the physical injuries because that's part of [childbirth].” (Jenny)

However, the women shared how they fought long and hard for acknowledgement and care and made demands; for many, this process had covered years. They had to repeatedly insist that something was wrong and felt pressure to prove their health problems to the HCPs. In some women, this led to their persistent problems being diagnosed and acknowledged after several years of delay. The struggle for care involved countless visits and referrals to different HCPs, demanding much strength and persistence, which exhausted them. Sometimes, the sequelae had to develop into an acute health situation, or some women decided to pay for private care to access the proper treatment and rehabilitation. Further, with time, they also became explicit about their demands for sick leave certificates and benefits.

“Well, it [short sick leave period because of birth traumas] just feels like scorn. To me, it is not a sufficient length of sick leave.” (Elin)

Wishing for improvement in women's healthcare

The perceived lack of adequate care and rehabilitation, access to sick leave benefits, and HCPs’ attitude negatively influenced the women’s opinions on healthcare services, especially postpartum healthcare. In addition, the women perceived many HCPs as unprofessional, indifferent, and unstructured. As a result, the women mistrusted the HCPs and lost hope in healthcare services. Thus, they were reluctant to seek further care and were anxious about receiving proper treatment or that HCPs would miss important things.

“I am not being listened to in women's healthcare. This is partly why I feel so disappointed.” (Linda) “You just don't trust the healthcare system. […] Some people have been struggling with their injuries for like 18 years. But the [specialist clinic] – I finally received fantastic treatment, and what if it could be available everywhere [in Sweden]?” (Hawa)

Moreover, the women described a struggle for their rights when deciding whether to report the HCPs to the authorities and pointed out the need to improve women’s healthcare. Reporting HCPs was perceived as complicated as the women did not want to blame specific individuals. The women saw that the major problem lay within the healthcare system and with individual HCPs.

“In the end, I met a fantastic person [healthcare professional]. She wanted me to report the mistreatment when I eventually had the strength. Because no one listened when I said I was ill. So, she has offered to help me if I want to, but I don't know if I have the strength to file a complaint.” (Josefin)

A wish to improve women’s healthcare services was articulated, especially regarding personal follow-up care beyond one year postpartum and the possibility of full-time or part-time sick leave certificates and benefits for persistent problems on equal terms. This wish also strengthened their decision not to give up searching for help and to raise their voices to help themselves and other women.

“I received physiotherapy and the follow-up surveys [the Perineal Laceration Register] during the first year, but thereafter I would have liked to have an annual follow-up for the next years to ensure the status and potential re-operations. […] I can google, but I want to have that information in dialog with a living person, but you do not get that.” (Jenny)

Partaking in developing educational material for HCPs or starting a career within women’s healthcare were some women’s ways to contribute and increase competency in persistent SPT-related health problems.

“One of my strategies since I got the injury is also to try to influence. Being able to be involved and influence what postpartum care should consist of.” (Jin)

Facing multidimensional losses when no help in sight

The subtheme ‘Facing multidimensional losses when no help in sight’ covered physical and mental health consequences and the financial and social losses the participating women faced when no support or access to needed care and rehabilitation was provided.

Being physically victimised by HCP's malpractice

The women’s experiences covered either being misdiagnosed during the suturing after birth or in the following years when seeking help for persistent SPT-related health problems. Further, they shared how physicians had incorrectly sutured vaginal and perineal muscles after childbirth, leading the women to live with incontinence, pain, prolapses, or sexual dysfunction if their vaginas were sutured too tight. They also described how they endured infections, wound ruptures, sepsis, necrosis, and re-operations. Additionally, the women perceived a general lack of competency regarding communication and persistent SPT-related health problems, including problems related to sex life and sexual functioning, besides a more specific lack regarding suturing techniques and ultrasound examinations.

“I was referred to a specialist clinic. And they found out that all the muscles were separated, the internal and external sphincters were torn, and my pinching ability was kind of weak. So, it was quite the opposite, really, quite the opposite. None of what the other physician had said was true [laughs]. Absolutely incredible. And she is supposed to be a specialist.” (Hawa)

Aching inside

Living with troubled postpartum bodies and the absence of HCPs’ legitimation of the women´s problems made them struggle mentally, feeling speechless and silenced. This neglect reinforced irritation, anger, distress, bitterness, and disappointment towards the HCPs and the healthcare services. One woman illustrated the emotional struggle in this way:

“It's just that the health services don’t believe you, which makes you feel terrible. It's a big deal that no one listens.” (Josefin)

Moreover, the women felt uncertain about their health status due to a default medical diagnosis with concerns for their future and which staff to trust. Consequently, some had to bite the bullet, put up with their situation, and try to think positively. Other women were denying or diminishing their SPT-related health problems, accepting that their symptoms would improve, even disappear or that their condition was ‘normal’ as they had been told. Further, the women described despair because their neglected health problems caused by their SPT made them feel exposed, unsure, and hopeless. In some, this desperation resulted in a mental breakdown, a fear of losing custody of their child due to mental illness or suicidal thoughts.

“Something broke inside of me that day. I felt entirely omitted; I was close to leaving my son and committing suicide. Nobody understood how bad everything was.” (Elin)

Additionally, the women suffered emotionally when motherhood was crushed. Their partner had to take the primary responsibility for the family, and the children had to come in second place as the mothers suffered from various physical and mental health problems. As a result, the women felt they missed their children’s development and could not use their parental social security benefits as desired.

“I feel devasted because people tell me, ‘You are on maternity leave’. I’m not on maternity leave; I’m sick. I should be on sick leave.” (Jaanika)

Suffering financial and societal losses

Moreover, the women suffered financially and societally due to persistent health problems. Some women were denied financial compensation from Patient Insurance (a national insurance system where patients can seek compensation for care injuries). The Social Security Agency and the HCPs were perceived as obstacles to receiving sick cash benefits. They noted that ‘extensive’ health problems were required to receive sick cash benefits and that their health problems paradoxically were not seen as extensive or even a problem per se by the HCPs; hence, no sick leave certificates were issued.

“He [the physician] tried to argue and clarify my pain situation in the sick leave certificate to meet the requirements for a sick leave benefit at the Social Security Agency. I was in so much pain and had to lie down to breastfeed. But, no, ‘If you can manage to hold the baby when breastfeeding, then you are on maternity leave, not sick leave benefit’ [mimicking the official at the Social Security Agency who rejected the certificate and consequently also the sick cash benefit]”. (Jaanika)

Furthermore, the women were set back financially and societally because they could not work full-time due to their persistent health problems. Therefore, some women chose to compensate for their work absence with part-time parental benefits to diminish their working hours and cover their inability to work due to persistent SPT-related health problems. Without a sick leave certificate, i.e., the physicians or the officials at the Social Security Agency’s acknowledgement of a ‘true’ health problem, partners or other relatives were obliged to adjust their work schedules to support or unburden the woman’s suffering and inability to work full-time. This reduction in working hours for the SPT-affected women and, in some cases, their partners was expressed to potentially negatively affect their upcoming careers and pensions. As a result, the women experienced being caught between stools in the social insurance systems:

“[…] You end up in a position where you are neither on sick leave nor unemployment benefits and at the same time cannot perform any offered work [due to persistent problems]. But multiple societal bodies demand and expect you to be a part of the working force, and nobody really listens.” (Elin)

Depending on other’s advocacy to navigate an arbitrary system

The last subtheme, ‘Depending on other’s advocacy to navigate an arbitrary system’, highlights the women’s experiences of, often by chance, finding a single devoted professional, i.e., a ‘key person’, to access needed care and rehabilitation. Such a ‘key person’ was vital to recognising persistent problems, legitimating symptoms, and enabling access to needed care, sick leave, and rehabilitation. The women who finally had legitimation for their health problems described that the medical diagnosis also came with a feeling of sanity and empowerment, relieving them of their paradoxical situation.

Encountering a ‘key person’ to receive needed care

A support system was a prerequisite for enduring their health problems and finding the strength to fight for access to care. This system could be a partner, other family members, or friends who gave the women power and courage, but most importantly – encountering a professional who saw their problems and provided referrals or other options to obtain the needed help and support. In most cases, women would search for years for competent HCPs, such as midwives, physicians, or physiotherapists, who would listen and acknowledge persistent problems. This ‘key person’ showed empathy and trustworthiness, creating relief and security. Further, the ‘key person’ was portrayed as competent, attentive, professional, and respectful. The ‘key persons’ also shared women’s outrage at the mistreatment and default healthcare they endured. Additionally, these ‘key persons’ were surprised that the women were not on sick cash benefits due to their symptoms and that they had to compensate for their financial situation with parental benefits or reduced working hours and lower salaries. Consequently, finding this ‘key person’, often by chance or word of mouth, was crucial for accessing care and marked a significant turning point in the women’s recovery.

“I sought help from another midwife, as I felt something was wrong. This midwife referred me to the physiotherapist, who referred me to a specialist, who then referred me to surgery and rehabilitation.” (Malin)

Some women received follow-up care for their persistent SPT-related health problems during the first year postpartum. If persistent problems occurred and were acknowledged, the women were offered different surgical approaches with various outcomes, consultations by colon specialists, physiotherapy, and psychiatric care. They were grateful for the help they received but felt more comprehensive care was needed.

Feeling sane and empowered

Confirmation of persistent SPT-related health problems was expressed as liberating, strengthening and, as one woman put it, a ‘win’ (Elin). Receiving a medical diagnosis and appurtenant treatment was relieving because the medical confirmation of the symptoms released a considerable burden. These women described being acknowledged, and the diagnosis proved that health problems existed, and the struggles were not in vain. Furthermore, it explicitly stated to everyone, including themselves, that they were not ‘crazy’, ‘imagining things’ or ‘hysterical’.

“So, my laceration has been classified as an injury caused by the healthcare services. This was somehow a confirmation. It's not just that it's in my head, but it has been established that it is a medical injury, and it could have been avoided.” (Jin)

Alongside feelings of sanity and being legitimised, the women experienced empowerment. The women felt supported and confident. Thus, finding an agency to address the taboo of their SPT by talking openly about it and helping others in the same situation was also seen as therapeutic. Further, the legitimation of the sequelae and access to appropriate care gave them time to heal and process their trauma. Receiving sick leave certificates and benefits was seen as a part of the empowerment and legitimacy of their persistent SPT-related health problems, reducing stress, and easing the financial burden. Furthermore, access to occupational rehabilitation and understanding at work became available. Thus, the women who had received the help they needed after a struggle to obtain it were hopeful about the future and possible recovery.

“I have regained my authority to speak up. It [SPT-related health problems] should be out in the open, not withheld.” (Jaanika)

Our main finding was that women with persistent health problems due to SPT at childbirth were caught in a paradox of living in a normalised but traumatised body, and their health problems were rejected as postpartum normalities. Furthermore, our results elucidated the difficulties in accessing postpartum healthcare, rehabilitation, and sick leave benefits. Therefore, the women struggled with neglected healthcare needs, diminished emotional well-being, and loss of financial and social status. Our study highlighted experiences up to 5 years after sustaining SPT, which showed that some women’s SPT-related health problems do not diminish with time. They faced challenges functioning in daily life, at work, and in society. In contrast, finding a ‘key person’, i.e., a professional who acknowledged the women’s persistent problems as legitimate, was a prerequisite for accessing all the needed care and sick leave and enhancing empowerment for the women. Thus, this ‘key person’ was not blinded by the obstetric gaze and instead used their agency and advocacy as support.

In the following, we will discuss our findings related to other empirical studies and problematise them with theoretical reflections.

The paradox of normalising the postpartum body

In our findings, the paradox arose when the HCPs dismissed physical health problems after SPT despite women’s perceived symptoms. Central in this context was a normalisation process where health problems were regarded as ‘normal’ by HCPs, a phenomenon also found in prior research on SPT [ 17 , 18 , 19 , 20 , 21 , 22 ]. The HCPs’ normalisation of women’s health problems can also be found regarding other medical conditions affecting women, such as pelvic organ prolapse [ 52 ], menstrual pain [ 53 ], endometriosis [ 54 ] or nausea and vomiting during pregnancy [ 55 ]. In light of the medicalisation of women’s healthcare, where the medical field has sought to pathologise natural bodily processes such as pregnancy and childbirth [ 33 ], actual medical conditions such as persistent SPT-related health problems are paradoxically normalised. Our findings, therefore, highlight the need to challenge HCPs’ views of what constitutes a ‘normal postpartum body’ or ‘normal postpartum symptoms’ after sustaining SPT.

The key to healthcare

In the context of denied legitimacy of health problems and neglected needs, it appeared that the women became dependent on the goodwill of a ‘key person’, personified as the respectful, competent, and empathetic HCP. Prior research on SPT has also found women struggling with accessing healthcare [ 6 , 17 ] and specific HCPs as enablers of care [ 12 ]. The dependency on a ‘key person’ to access adequate care might highlight a structural problem within the provision of postpartum SPT-related healthcare. Globally, there are a few national guidelines on SPT management and prevention [ 56 ]. Additionally, no national guidelines regarding postpartum care of SPT exist in Sweden, and pelvic floor teams are only available in some Swedish regions [ 16 ]. In our study, the women lacked information, and competent HCPs were hard to find or located far away. Other studies have shown poor patient information and education as a postpartum problem [ 6 , 10 , 18 ], indicating a need to develop targeted oral and written information on wound healing and recovery. Further, women in Australia describe similar challenges to accessing SPT-related healthcare when having persistent SPT-related health problems [ 18 ]. The absence of national Australian guidelines may have led to inconsistent care, failing to meet women’s healthcare needs. Further, women from rural areas have had additional difficulties accessing needed care. In 2021, a clinical standard for SPT was implemented in Australia, comprising care standards for follow-up [ 57 ]. Thus, to improve the national situation in Sweden, more research and resources must be allocated to develop evidence-based recommendations, preferably internationally accepted guidelines [ 56 ]. Moreover, the accessibility of SPT-related healthcare, such as pelvic floor clinics, needs to be expanded so that women can easily meet their ‘key person’ if required.

Woman-(de)centred care?

We found that HCPs were obstructed by their obstetric gaze when assessing women with persistent SPT-related health problems. Obstetric gaze derives from the medical gaze notions [ 58 ], suggesting a gaze that splits the individual from the body, constructing the care-seeker as a medical object or condition instead of an individual with a social context. This gaze blinded HCPs who normalised obvious health problems. Recent advances in women’s healthcare in industrial countries and midwifery research show development towards continuity of care models with a woman-centred approach in different caseload-midwifery projects and informed choice regarding place of childbirth [ 28 , 59 , 60 , 61 ]. Wom e n-centred care [ 2 ] is a widespread care philosophy within midwifery that advocates for providing individualised care to women. Further, wom a n-centred care emphasises the individual woman’s healthcare needs and situation, incorporating the concepts of choice, control, continuity of caregiver, and self-determination. It can be argued that the obstetric gaze obstructed HCPs in providing wom a n-centred care because they did not acknowledge the women’s healthcare needs. Consequently, the women did not have control over their health situation. Making women feel empowered [ 2 , 62 ] is crucial in woman-centred care. Hence, the ‘key persons’ in our study managed to provide wom a n-centred care where acknowledgement of problems as real medical problems and access to care made the women experience empowerment. Therefore, we argue that guidelines regarding follow-up care after SPT should ideally be developed with wom a n-centred care as its core.

Everything looks fine

The biomedical model has traditionally focused on normality and abnormality rather than health [ 63 ]. Theoretically, the ‘obstetric gaze’ is closely tied to the ‘medical gaze’ and the ‘male gaze’, referring to the biomedical paradigm and its power [ 27 , 58 ]. In our study, the obstetric gaze judged the women’s persistent health problems due to SPT as ‘normal’ and the appearance of their genital area as ‘fine’, which created a paradoxical situation regarding the legitimacy of their ongoing health problems after SPT. Generally, the healthcare sector is critiqued for reducing the body to only incorporating organs and tissue, i.e., focusing on physical symptoms [ 27 ].

The women in our study, of which most showed more than one significant symptom after SPT, noted that HCPs would comment on the physical appearance of the perineal area rather than its functionality by telling them that ‘everything looked fine’. The focus on looks rather than functionality regarding SPT-related health problems aligns with the findings presented by others [ 17 ]. Having women describe how their persistent physical pelvic floor problems after SPT during childbirth are trivialised, normalised, questioned, and labelled as mental health issues is of utmost concern. This implies the need for rapid improvements in HCPs’ knowledge and organisation of care but also raises the question of what is considered a normal status and recovery after any perineal laceration in the short- and long-term perspective. A similar discursive focus on women’s appearance instead of their health problems has also been found among HCPs when women seek care for chronic pain [ 64 ]. The sentence ‘Everything looks fine’ can be interpreted as an objectifying, gendered discourse in an obstetric context. This discourse may reinforce the obstetric gaze and, in the broader sense, the medical gaze [ 58 ]. The Swedish Health and Medical Care Act [ 39 ] advocates for the respectful treatment of patients. Hence, it is noteworthy that the women experienced being judged by the looks of their genital area in their medical encounters rather than HCPs addressing the functionality. Such treatment does not align with the legislation and calls for a discourse analysis of the attitudes of HCPs towards women with persistent SPT-related health problems and their experiences of providing care for affected women.

Being subjected to obstetric gaslighting

In light of the women’s perception of their dismissal as dramatic, illegitimate, and irrational patients, we argue that they faced so-called ‘gaslighting’ in an obstetric context [ 65 , 66 ]. Thus, the women experienced being offered sick leave for mental problems instead of their perceived physical health problems, depicting them as hysterical women who exaggerated their condition. Gaslighting is a concept used in medicine in general [ 66 ] and in obstetrics regarding traumatic childbirth experiences [ 65 ]. The concept of hysteria, i.e., a prior medical diagnosis and historical concept theoretically linked to femininity [ 67 , 68 ] and ‘obstetric gaslighting’ [ 65 ], has also been found in research on women’s chronic pain [ 64 ] and endometriosis [ 69 ]. Men with chronic pain are perceived as brave, and women in pain are hysterical, emotional, whining, malingering, or imagining pain [ 64 ]. Further, women with endometriosis are viewed as ‘reproductive bodies’ with a proneness for hysteria [ 69 ]. Obstetric gaslighting, enforced by the normalisation of SPT-related health problems and the gendered stereotype of women as hysterical patients, puts women with SPT in an inferior position towards HCPs and can, therefore, be interpreted as a demonstration of institutional power [ 65 ]. Hence, being overlooked by the obstetric gaze might constitute a form of obstetric gaslighting, a concept that has not been applied to SPT before.

Implications and significance

Our study indicated that women continue to have problems accessing healthcare for persistent SPT-related health problems several years postpartum. Additionally, women with persistent SPT-related health problems often depended on a ‘key person’ with the competence to open the doors to comprehensive care, as shown in our findings. The Swedish Government launched a multi-million project from 2015 to 2022 to improve and promote women’s health [ 70 ]. Despite this investment, the depicted experiences of the included women reflect upon remaining structural and clinical problems within Swedish healthcare, which need further attention, investigation, and actions. Additionally, there are considerable differences in reported satisfaction and prevalence of complications at the one-year follow-up between the regions [ 3 ], indicating that there are suboptimal healthcare services. With a significant variation in satisfaction and recovery at one year, there are reasons to believe that women with prolonged problems may experience problems getting access to needed care.

Our study also showed that SPT-related healthcare services are not available on equal terms to women with persistent SPT-related health problems. In general, many women within this group had problems accessing care and sick leave for years. However, depending on where the women reside, not all women have access to specialised care. This inequity may be explained by Sweden having 21 self-governing health regions, and in the absence of national guidelines regarding SPT care and follow-up, the healthcare provision for affected women varies. To secure access to postpartum care for women with SPT in general and those with different prerequisites within this group, implementation studies are needed to develop and evaluate the effect of national guidelines for follow-up care regarding SPT.

Strengths and limitations

This study has strengths and limitations that need to be addressed. A significant strength, enhancing credibility and transferability, was providing a clear context and thick descriptions of our results, where we thoroughly portrayed the women’s voices using quotations [ 35 ]. Further, our detailed account of the study context, data collection, and data analysis process facilitated the transferability of our study. Including three women born outside of Sweden added to the variety of the sample and thus improved credibility because qualitative research often overlooks immigrants' experiences. However, the migrant women spoke Swedish well enough to participate in an interview, indicating that they have been living in Sweden for some time and might be familiar with the healthcare system. Finally, the credibility and dependability of this study were also strengthened by the frequent use of interdisciplinary triangulation between the authors throughout data analysis and the writing process, as well as peer review at a research seminar.

A potential limitation was that this study may not have fully explored the situation of women with fourth-degree lacerations or those with lower education, as most participants had third-degree perineal lacerations and higher education. Further, we could not include non-binary persons and same-sex or single parents, which may be a weakness; consequently, future studies should focus on the under-represented participant groups and migrant women needing an interpreter. Additionally, all women responded voluntarily to the study invitation. Thus, our participants might be particularly outspoken about their problems or interested in raising their voices or experiences. However, they represented a variety of persistent SPT-related health problems of various severity, and some had been able to get access to medical help, whereas others had not. Additionally, our findings cohered to similar studies [ 12 , 17 ] covering shorter periods after the SPT, which may indicate that the experiences of the challenging search for needed help remain over time. Therefore, our findings may reflect other women’s experiences seeking care for SPT-related health problems and may be transferable to other women’s experiences with persistent health problems of a rare condition.

The data for this study was comprehensive and rich. Information power in qualitative research is an ongoing discussion, and the number of participants and their representativity can be seen as a limitation of credibility and transferability [ 71 , 72 ]. Graneheim, Lindgren and Lundman [ 36 ] argue that sample size should be determined by the study’s aim and the data’s quality so that variations in experiences can be captured. They do, therefore, not recommend a specific number of participants, but others do [ 71 ]. With this in mind, the authors believe that the women’s detailed descriptions of the included concepts and the extensive length of the conducted interviews enabled us to achieve sufficient information power based on the richness of the data [ 72 ].

By qualitatively exploring how women with persistent SPT-related health problems experienced their healthcare encounters, we interpreted that they faced a paradox of being reassured of normality by HCPs despite reporting sequelae symptoms. Thus, women’s needs for medical care, rehabilitation, and sick leave were largely neglected. Further, our study might indicate a structural problem within women’s postpartum healthcare, indicating that access to care depended on encountering a ‘key person’, a professional who acknowledged persistent problems as real symptoms. Access to quality care provided with a professional attitude was essential for the future well-being of women with persistent SPT-related health problems. Thus, it should not depend on meeting a single ‘key person’. Therefore, national guidelines for long-term postpartum care of persistent SPT-related health problems must be developed in Sweden. Additionally, to ensure that healthcare services meet the individual needs of women with persistent SPT-related health problems, it is crucial to consider arranging the organisation and availability of quality care for these women from a woman-centred perspective.

Availability of data and materials

The original recordings and transcripts from the current study are not publicly available due to securing the individual privacy and confidentiality of the participants. Data are available from the corresponding author upon reasonable request.

Abbreviations

Healthcare professionals

Interquartile range

Strategic Research Area Health Care Science

• Severe perineal trauma

Sexual and reproductive health and rights

World Health Organisation

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Acknowledgements

We want to thank the participating women for generously sharing their experiences.

Open access funding provided by Umea University. This work was supported by the Research Lift (SWE: Forskningslyftet) and Strategic Research Area Health Care Science (SFO-V), Umeå University. The funders had no specific role in the conceptualisation, design, data collection, analysis, publication decision, or manuscript preparation.

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Katharina Tjernström, Inger Lindberg & Margareta Persson

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KT: conceptualisation; data curation; formal analysis; investigation; methodology; validation; visualisation; writing - original draft; writing - review & editing. IL: conceptualisation; methodology; supervision; visualisation; writing - review & editing. MW: conceptualisation; methodology; supervision; visualisation; writing - review & editing. MP: conceptualisation; data curation; funding acquisition; methodology; project administration; supervision; visualisation; writing - review & editing. All authors read and approved the final manuscript.

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Additional file 1. Semi-structured interview guide for individual interviews; contains interview questions aimed at highlighting the experience of everyday life and working life after suffering 3 rd or 4 th degree perineal laceration at childbirth (i.e., severe perineal trauma [SPT]).

Additional file 2. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist.

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Tjernström, K., Lindberg, I., Wiklund, M. et al. Overlooked by the obstetric gaze – how women with persistent health problems due to severe perineal trauma experience encounters with healthcare services: a qualitative study. BMC Health Serv Res 24 , 610 (2024). https://doi.org/10.1186/s12913-024-11037-5

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Loneliness in Emerging Adulthood: A Scoping Review

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Loneliness is prevalent during emerging adulthood (approximately 18–25 years) and is an important issue given it has been linked to poorer physical and mental health outcomes. This preregistered scoping review aimed to provide an overview of the literature on loneliness in emerging adulthood, including the (a) conceptualization and measurement of loneliness, (b) loneliness theories used, (c) risk factors and outcomes examined, (d) sex-gender differences observed, and (e) characteristics of emerging adult samples previously researched. Following the Joanna Briggs Institute (JBI) guidelines, seven electronic databases were searched for articles focused on loneliness published from 2016 to 2021, where the mean age of participants was ≥ 18 and ≤ 25 years. Of the 4068 papers screened, 201 articles were included in the final review. Findings suggest the need for a clearer consensus in the literature regarding the conceptualization of loneliness for emerging adults and more qualitative work exploring emerging adults’ subjective experiences of loneliness. Results highlight an over-reliance on cross-sectional studies. Over two thirds of articles described their sample as university students and the median percentage of females was 63.30%. Therefore, fewer cross-sectional studies using convenience samples and more population-based, longitudinal research is needed to understand the factors predicting loneliness over time, and the downstream impact of loneliness for emerging adults.

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Introduction

Loneliness is commonly defined as the unpleasant feeling that accompanies the experience of perceiving the quantity or quality of one’s social relationships as inadequate (Perlman & Peplau, 1981 ). While loneliness is common across the lifespan, it is particularly prevalent in young, or emerging adults (Barreto et al., 2021 ; Hawkley et al., 2022 ). Prevalence estimates from the United Kingdom suggest up to 31% of emerging adults experience loneliness at least some of the time, and 5–7% feel lonely often (Matthews et al., 2019 ). In the United States, about 24% of emerging adults report feeling lonely “a lot of the day” (Witters, 2023 ), and almost one in three (32.6%) emerging adults in India report high levels of loneliness (Banerjee & Kohli, 2022 ). Emerging adult loneliness has been independently associated with indictors of poorer physical and mental health, including hypertension, anxiety and depressive symptoms, alcohol problems, and long-term mental illness (Christiansen et al., 2021 ). Therefore, loneliness is an important issue in emerging adulthood and good quality research is a key step in offsetting this potential harm. However, the literature is lacking a review that summarizes important aspects of the research in emerging adulthood, including how loneliness is conceptualized and measured, which loneliness theories are used, which risk factors and outcomes of loneliness have been examined, if there are sex-gender differences in loneliness, and the characteristics of emerging adults previously included in research in this area. This information is needed to provide a basis for rigorous loneliness research for this group. Therefore, this scoping review addresses this gap.

Loneliness in Emerging Adulthood

The transition from adolescence to full-fledged adulthood in developed countries is longer and more challenging to define than in previous points in history. This is primarily due to engaging in traditional markers of adulthood such as marriage and parenthood at later ages, and the widespread uptake of education beyond secondary school (Arnett, 2024 ). Arnett’s theory of emerging adulthood ( 2000 , 2024 ) describes a distinct life-stage, from late teens through mid-to-late twenties. When age ranges are needed to describe emerging adulthood, ages 18–25 years are considered a conservative estimate, as few 18–25-year-olds have entered stable adulthood (Arnett, 2024 ). However, the specific age of the beginning and end of this life stage is variable, and critics have noted that the concept of emerging adulthood is heavily influenced by cultural, socioeconomic, and educational factors (Shanahan & Longest, 2009 ). Culture plays an important role in variation in the length and content of emerging adulthood, and the markers of established adulthood (Arnett, 2024 ). For instance, in keeping with the Chinese tradition of collectivism, a key marker of adulthood for Chinese emerging adults is the ability to financially support their parents, whereas this is not typically endorsed in the United States (Nelson & Luster, 2015 ).

Despite these critiques, there is general agreement that the prolonged entry into adulthood has resulted in significant developmental challenges (Côté, 2014 ). Typical features of emerging adulthood include identity exploration and greater self-focus, which may lead to instability in emerging adults’ social networks (Arnett & Mitra, 2020 ). Major social transitions occurring during young, or emerging, adulthood include moving out of the parental home, or beginning university or employment (Arnett, 2024 ). An age-normative perspective suggests that the timing of ongoing physical and psychological changes, unique societal expectations, and key social transitions places emerging adults at increased risk of loneliness (Qualter et al., 2015 ). Given the vulnerability to loneliness in this age group, robust research is needed to understand loneliness in emerging adulthood.

Recognizing that emerging adults are at particular risk for loneliness emphasizes the need to consider factors associated with loneliness in this group. However, the research priorities in relation to examining risk factors and outcomes of loneliness in emerging adulthood are unclear. One existing scoping review explored the literature on loneliness in youth (aged 15–24 years; Adib & Sabharwal, 2023 ); however, the review was limited in scope with a specific focus on social support and relationship factors like parenting bonds, both of which were inversely associated with loneliness. The extent to which other factors that may be associated with loneliness, for example mental health issues and technology use (Matthews et al., 2019 ), are focused on in the literature with emerging adults have not been reviewed. Additionally, gender differences in loneliness are important for understanding who is most vulnerable to loneliness. While one comprehensive meta-analysis suggested that young adult males were lonelier than females (Maes et al., 2019 ), this study considered a much wider age range (21–40 years) as young adulthood. Therefore, summarizing sex-gender differences in emerging adulthood merits consideration. Finally, persistent sampling bias issues mean that loneliness research generalized to emerging adults may be based on convenience samples of university undergraduates which may not represent diverse groups (Nielsen et al., 2017 ). It is unclear to what extent specific groups who disproportionately experience loneliness, such as migrants and people with poor health (Barreto et al., 2023 ), are focused on in the literature. Understanding who we study when we study emerging adults is of importance; therefore, a summary of the characteristics of emerging adults included in loneliness research is needed to support robust research in this area.

A key aspect of understanding loneliness in emerging adulthood is a clear conceptualization and distinction from related concepts. Loneliness is a subjective and emotional experience that is related to, but distinct from social isolation, which is the objective count of social contacts (Wigfield et al., 2022 ). Across all ages, loneliness is only weakly associated with measures of social contact (Luhmann & Hawkley, 2016 ). In other words, it is not the mere absence of social contact that impacts lonely individuals, but rather the perceived discrepancy between one’s desired and actual social relationships (Perlman & Peplau, 1981 ). Loneliness is also distinct from solitude in that loneliness is an unwanted experience, whereas solitude, or being alone, is a conscious choice that is often described as positive (Weinstein et al., 2023 ). The fact that loneliness and related concepts have been conflated or confused underscores the importance of a clear conceptual understanding of loneliness (Wigfield et al., 2022 ). Defining and measuring constructs of interest are a foundational part of rigorous research (Flake & Fried, 2020 ), yet no review has summarized how loneliness has been conceptualized and measured in research with emerging adults.

While loneliness has often been considered unidimensional, there has long been a conceptualization of loneliness as multidimensional. For example, Weiss’ ( 1973 ) interactionist approach proposed that relationship-specific types of loneliness arise as the result of deficits in two types of social needs; the need for close attachment figures (emotional loneliness) and the need for a meaningful social network (social loneliness). Social and emotional loneliness are distinct, but correlated, states that arise from different events in a person’s life; emotional loneliness might occur as the result of a romantic relationship breakup, whereas social loneliness can occur after moving to a new town. Recent research demonstrated distinct developmental trajectories for social and emotional loneliness across emerging adulthood (von Soest et al., 2020 ) and midlife (Manoli et al., 2022 ). Emotional loneliness levels moderately increase across emerging adulthood, whereas social loneliness substantially decreases throughout emerging adulthood (von Soest et al., 2020 ), suggesting that multidimensional conceptualizations of loneliness warrant consideration.

The complex nature of loneliness means that several other theories have conceptualized loneliness. Prominent approaches include the cognitive discrepancy model (Peplau & Perlman, 1982 ), the evolutionary theory (Cacioppo et al., 2006 ), the psychodynamic theory (Reichmann, 1959 ), and the existential approach (Moustakas, 1961 ). Although theoretical approaches to loneliness may overlap in their definitions, they can differ in proposed causes of loneliness. For example, the cognitive discrepancy model considers the influence of personality, cultural, and situational factors and proposes that loneliness is caused by a person appraising a deficiency in their social relationships (Peplau & Perlman, 1982 ). The evolutionary theory of loneliness suggests that loneliness arises as a signal of social pain to motivate reconnection and is transient for most individuals (Cacioppo et al., 2006 ; Spithoven et al., 2019 ). Other theories, such as the socio-cognitive model, focus on the mechanisms through which loneliness persists and impacts health (Cacioppo & Hawkley, 2009 ). However, no review has summarized how loneliness has been conceptualized and what theories of loneliness have been used in the emerging adult literature.

Current Study

Although there has been an acceleration of research on loneliness in emerging adulthood and recognition that loneliness is an important issue for young people’s health, there is no existing scoping review summarizing key aspects of this literature. The goal of this preregistered scoping review was to provide a descriptive overview of the existing literature on loneliness in emerging adulthood to inform future research. This review was guided by the following research question: What is known from the available literature about loneliness in emerging adults? The research sub-questions included how has loneliness been conceptualized and measured in research in emerging adults (Research Question 1)?, what loneliness theories have been used in research on loneliness in emerging adulthood (Research Question 2)?, what risk factors and outcomes for loneliness have been previously examined in emerging adulthood (Research Question 3)?, what is the evidence on sex-gender differences in loneliness in emerging adults (Research Question 4)?, and what are the characteristics of emerging adults included in previous loneliness research (Research Question 5)?.

Given the focus on loneliness in emerging adulthood, a topic with increasing and disparate literature, a scoping review, rather than a systematic review, was considered most appropriate (Munn et al., 2018 ). This scoping review was informed by the Joanna Briggs Institute (JBI) framework for scoping reviews (Peters et al., 2015 ) and Arksey and O’Malley’s ( 2005 ) seminal work. The reporting of results was guided by Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews (PRISMA-ScR; Tricco et al., 2018 ). This review was preregistered on Open Science Framework ( https://osf.io/c7ke9 ). To complete a feasible review, some amendments to the protocol were necessary and are outlined below (labelled as Amendment to Protocol 1–4).

Identifying Relevant Studies

Following preliminary searches of two databases (PsycInfo and Medline) to become familiar with key terms, the following electronic databases were searched in June 2021; Scopus, PubMed, PsycArticles, PsycInfo, Medline, ScienceDirect, and Applied Social Sciences Index and Abstracts (ASSIA). The search was updated in April 2022 to source articles published until the end of 2021. The search terms describe the concepts loneliness and young, or emerging, adults (see Table  1 ). The search was tailored to the specific requirements of each electronic database (see Supplementary Material 1 for example of a database search).

Initially, the search included peer-reviewed journal articles published between the years 2000–2021. Given that Arnett’s ( 2000 ) seminal work on emerging adulthood was published in the year 2000, it was expected to yield more research on the target population after this year. Using this year limit, 313 articles were eligible for inclusion in the review. However, following discussion among the authors, a consensus was reached that given the large volume of relevant literature, a year limit of 2016–2021 was sufficient for a feasible narrative summary of the recent literature on loneliness in emerging adulthood (Amendment to Protocol 1). The increase in research interest on loneliness in emerging adulthood in 2016 is shown in Fig.  1 .

The number of articles eligible for inclusion by year of publication. Note Solid vertical line indicates the cut off from 2016 to 2021 following Amendment to Protocol 1

Grey literature in the form of difficult-to-locate studies or reports by organizations interested in youth mental health (e.g., Jigsaw, SpunOut. i.e., National Youth Council of Ireland) were searched for by posting general requests (in October 2021) for relevant information on Twitter and mentioning relevant youth and research network organizations (“@organization”) in such tweets to encourage reposting (Adams et al., 2016 ). Additionally, a large loneliness research network placed a request for literature in their newsletter distributed to experts in the field (in December 2021). No additional eligible articles that had not already been identified were located.

The study protocol outlined the aim for an additional search for reports by relevant organizations interested in youth mental health by identifying organization websites using a search engine like Google. After a preliminary search for this type of grey literature, consensus was reached that following grey literature search strategies outlined by others (i.e., Adams et al., 2016 ) was a satisfactory search for grey literature (Amendment to Protocol 2). Grey literature was a complementary part of the search strategy and considering the large volume of identified peer-reviewed articles, peer-reviewed literature was prioritized in this review. This decision was also influenced by the consideration that when using search engines like Google, even if the search engine search was replicable, other researchers may not retrieve the same results on replication, as Google indexes websites based on several predictors: geographical location, previous search history, popularity, and so on (Bates, 2011 ).

Study Selection

Research where loneliness was a key focus of the work was included. This was determined by the inclusion of loneliness in an aim, objective, research question, or hypothesis. Quantitative studies that reported on loneliness under a broader term were included; for example, studies measuring or reporting on the construct of loneliness but describing it in the aims or objectives under broader terms like “psychological well-being”, “mental health”, or similar. Following preliminary screening, additional inclusion criteria outlined that where it was difficult to determine if loneliness was a key focus of quantitative research, articles must have reported analysis beyond the prevalence of loneliness to be included. With regards to qualitative research, if it was unclear if loneliness was a key focus of the work, articles must have discussed loneliness as a key concept in the introduction to be included (Amendment to Protocol 3).

To identify the types of available evidence in the area (Munn et al., 2018 ), qualitative, quantitative, mixed-methods, systematic reviews, and meta-synthesis articles were included.

Articles where the age of participants was ≥ 18 and ≤ 25 years were included. Articles that included a wider age range but reported a mean age ≥ 18 and ≤ 25 years were included. Following preliminary screening, further clarification was added to the inclusion criteria detailing where studies were longitudinal in design, included studies must report loneliness for age ≥ 18 and ≤ 25 years at least one time point (Amendment to Protocol 4).

Included research articles were not limited by population groups, specific life-events, specific samples, setting, or geographical location.

Included articles were not limited by measure of loneliness.

Included articles were published in English (the researchers’ only language).

Narrative reviews and loneliness scale development articles were excluded, as well as editorials, commentaries, opinion pieces, dissertations, and book chapters (labelled as “wrong article type or study design” in Fig.  2 ). Figure  2 summarizes the study selection process. In total, 8,863 articles were retrieved from the electronic database search. EndNote X9 software was used to manage references and facilitate duplicate record removal. Following duplicate record removal, 4,068 articles were screened by title and abstract on Rayyan ( https://rayyan.ai/ , Ouzzani et al., 2016 ). Fifty percent of titles and abstracts were blindly screened by a second reviewer (SS), inter-rater agreement was 98.00%. After title and abstract screening, 754 articles were included for full text screening. During full-text screening, EK contacted authors via ResearchGate to request their full-text articles and 13 of these requests were unsuccessful. Second reviewers (SS, MMG, AG) screened 50% of full-text articles. Inter-rater agreement for full-text articles was 94.19%. All disagreements were resolved through discussion; a further reviewer (AMC) was consulted on six (0.79%) decisions during full text screening.

PRISMA flow chart of the study selection

Data Charting

Data charting was conducted for all included articles by one reviewer (EK) by entering information into Microsoft Excel tables. The data charting form was pre-piloted on a random selection of articles and was refined to ensure all relevant information was extracted. A proportion of data charting (10%) was checked by a second reviewer (MMcG) for accuracy. The data charting form included (a) bibliographic information, (b) key study and subject matter information, (c) the conceptualization and measurement of loneliness, (d) the loneliness theories included, (e) the examined predictors and outcomes for loneliness, (f) sex-gender differences, and (g) characteristics of emerging adult samples included. The detailed list of information for which data were charted can be found in Supplementary Material 2.

Summarizing, and Reporting the Findings

Given that the aim of this review was to provide a descriptive summary of the available literature on loneliness in emerging adulthood, the quality of included studies was not assessed. All findings were included in the narrative review. Checks were completed to ensure the findings of the included systematic review were not duplicated in the results. Tables and narrative summaries were generated for each research sub-question to present a descriptive overview of the research on loneliness in emerging adulthood (Peters et al., 2015 ).

Study Context and Characteristics

After eligibility screening, 201 articles were included in the final scoping review. The publication year of included articles ranged from 2016 to 2021 (see Fig.  1 ). A small number of articles identified in the original search that were published online in 2020 or 2021 but were assigned to a journal issue in 2022 (e.g., Arslan et al., 2022 ; Hopmeyer et al., 2022 ) were retained. Research on loneliness in emerging adulthood represents a growing area of research, with almost half (47.26%) of the included articles published in 2020 and 2021.

The sample sizes within original research articles ranged from 4 to 71,988. Studies using quantitative analysis had sample sizes ranging from 35 to 71,988. Qualitative and mixed-method studies conducting qualitative analysis had sample sizes ranging from 4 to 686. The sole included systematic review and meta-analysis (Buecker et al., 2021 ) included data from 124,855 participants.

Included original articles were conducted in 44 countries across five continents. Thirteen (6.47%) articles included samples from more than one country. Almost half (49.25%) of the articles included samples from Western countries where English is the primary language. The breakdown of how many articles included samples from each country are as follows: USA ( k  = 66, 32.84%), China ( k  = 21, 10.45%), UK ( k  = 18, 8.96%), Turkey ( k  = 12, 5.97%), Poland ( k  = 11, 5.47%), Australia ( k  = 9, 4.48%), Germany ( k  = 5, 2.49%), Denmark ( k  = 4, 1.99%). The Netherlands, South Korea, Canada, Hungary, South Africa, and Spain were each included in three (1.49%) articles. Singapore, Greece, Republic of Ireland, Israel, and Bangladesh were each included in two (1.00%) articles. Finland, Italy, Northern Ireland, Norway, Slovakia, Austria, Hong Kong, Indonesia, Japan, Sweden, Thailand, Malaysia, and Nigeria were each included in one (0.50%) article. Included original research articles had a general community or university setting (including online surveys) ( k  = 186, 92.54%), or were conducted in a clinical or laboratory setting (e.g., an outpatient clinic) ( k  = 13, 6.47%).

Study Design

Included articles were quantitative ( k  = 190, 94.53%), mixed method ( k  = 8, 3.98%), qualitative ( k  = 1, 0.50%), systematic review and meta-analyses ( k  = 1, 0.50%), and qualitative protocol ( k  = 1, 0.50%) studies. The following study designs were included; cross-sectional ( k  = 151, 75.12%), longitudinal ( k  = 44, 21.89%), and experimental ( k  = 4, 1.99%).

Covid-19 Related Studies

Thirty (14.93%) articles explored loneliness in relation to the Covid-19 pandemic. Most studies ( k  = 23) explored the prevalence of loneliness or the association of loneliness with factors such as life satisfaction, mental health, quality of life during pandemic restrictions, or in the broader context of Covid-19 pandemic. For example, one study compared the reported prevalence of mental health issues and loneliness in emerging adults in the UK and China during the pandemic (Liu et al., 2021 ), reporting higher loneliness levels in the UK. Some studies ( k  = 3) examined specific Covid-19 related factors, such as “Covid-19 worry” (Mayorga et al., 2021 ) and “Coronavirus anxiety” (Arslan et al., 2022 ), in relation to loneliness. Merolla et al. ( 2021 ) used experience sampling and nightly diary surveys to examine how pandemic related anxiety and depressive symptoms manifested in daily perceptions of loneliness; Covid-19 related anxiety was independently associated with greater loneliness. Other studies ( k  = 2) focused on emerging adults’ relocations during the pandemic (Conrad et al., 2021 ; Fanari & Segrin, 2021 ). For example, a longitudinal examination of the extent to which the stressor of forced re-entry from studying abroad during the Covid-19 pandemic was predictive of loneliness in U.S. emerging adults (Fanari & Segrin, 2021 ). Lastly, one study conducted during the Covid-19 pandemic evaluated two interventions for depression and loneliness (Cruwys et al., 2021 ).

Research Question 1: Conceptualization and Measurement of Loneliness

Over half ( k  = 112; 55.72%) of the articles included an explicit definition of loneliness, while another five (2.49%) articles did not formally define loneliness beyond describing it as “perceived social isolation”. Although there was some variation in the way loneliness was defined, for example, describing loneliness as thwarted belongingness (Chu et al., 2016 ), or as the response to the absence of a relationship (Andangsari & Dhowi, 2016 ), loneliness was mostly defined as an emotionally unpleasant subjective experience that occurs when a person perceives their social relationships to be inadequate (Perlman & Peplau, 1981 ). While most ( k  = 187, 93.03%) articles did not explicitly articulate multiple dimensions of loneliness, 14 (6.97%) articles considered a multidimensional conceptualization of loneliness referring to: social and emotional loneliness ( k  = 6, 2.98%); social, romantic, and family loneliness ( k  = 6, 2.98%); isolation, relational connectedness, and collective connectedness ( k  = 1, 0.50%); romantic loneliness ( k  = 1, 0.50%).

In total, this scoping review identified 16 measures of loneliness in included articles. The University of California Los Angeles (UCLA; Russell et al., 1980 ) Loneliness scale was the most employed measure with 161 (80.10%) included articles using a version of this scale. Twelve (5.97%) studies employed a single-item direct measure of loneliness, such as “How lonely did you feel in the past week?”. See Supplementary Material 3 for a full summary of measures of loneliness in included articles.

Most qualitative or mixed-method studies employed semi-structured interviews to explore loneliness ( k  = 4). Others used open ended survey responses ( k  = 2), free association task ( k  = 1), or group discussions and reflective journal responses ( k  = 1).

Research Question 2: Loneliness Theories

Of the 201 included articles, 29 (14.43%) articles explicitly referenced a loneliness theory in their introduction. While it is possible that some articles implicitly used loneliness theory, articles were considered to have explicitly stated use of loneliness theory if a loneliness theory was referenced in the introduction or aims of the article. Some articles referred to more than one loneliness theory. Seven loneliness theories (see Table  2 for summary) were clearly articulated in loneliness research on emerging adults.

Research Question 3: Risk Factors and Outcomes

A wide range of risk factors and outcomes were examined in association with loneliness in quantitative or mixed-method studies (see Supplementary Material 4 for detail). Most articles examining factors associated with loneliness were cross-sectional in design; longitudinal studies mostly examined loneliness risk factors ( k  = 25, 12.44%), outcomes were examined in 13 (6.47%) longitudinal studies. Of the longitudinal research examining predictors of loneliness, family and social relationship factors, such as perceived social support, were the most studied risk factors ( k  = 7). Whereas mental health outcomes, like depression, were the most examined loneliness outcomes in longitudinal studies ( k  = 6).

Only two longitudinal studies examined within- and between-person variances in loneliness development and the risk and outcome factors associated with changes; one explored the interindividual differences in loneliness development and mental health outcomes in emerging adulthood (Hutten et al., 2021 ). Another examined longitudinal within- and between-person associations of substance use, social influences, and loneliness among emerging adults who use drugs (Bonar et al., 2022 ).

Research Question 4: Sex-Gender Differences in Loneliness

In total, 48 (23.88%) studies explored sex-gender differences in loneliness; 40 reported no statistically significant ( p  > 0.05) difference between male and female loneliness scores, whereas there were eight reports of a significant ( p  < 0.05) sex-gender difference. Of those that reported significant sex-gender differences, six studies reported higher female loneliness scores and two studies reported higher male loneliness scores. Most studies ( k  = 4) reporting significant sex-gender differences measured loneliness using the 20-item UCLA Loneliness Scale (Russell et al., 1980 ), others ( k  = 2) used the Social and Emotional Loneliness Scale for Adults (SELSA; DiTommaso & Spinner, 1993 ), one used the Loneliness in Context Questionnaire for College Students (Asher & Weeks, 2014 ), and one used a direct single-item measure. See Table  3 for a complete summary of results.

Research Question 5: Characteristics of Emerging Adult Samples Included in Loneliness Research

The minimum mean age of included studies was 18.00 years, the maximum mean age was 24.78 years. The gender split of included studies ranged from 0% female to 100% female. The median percentage of females in included samples was 63.30%. Over two thirds ( k  = 137, 68.16%) of articles described their sample as either all or mostly (> 80% of sample) university students. The remaining articles included: general community samples ( k  = 24, 11.94%), specific samples (e.g., inflammatory bowel disease patients, see Supplementary Material 5 for full details of articles including specific emerging adult samples) ( k  = 20, 9.95%), population representative samples ( k  = 11, 5.47%), high school students ( k  = 6, 2.94%). Some articles ( k  = 3, 1.49%) did not report information on their sample or sample information was not applicable.

Despite an increase of research interest in loneliness in younger age groups and recognition that loneliness is an important issue for emerging adults’ health (Christiansen et al., 2021 ), there was no existing scoping review summarizing the key aspects of this literature. Reviews can reduce research waste by identifying priority research questions and key gaps in the literature, mapping existing methodological approaches, and clarifying terms and concepts used in the literature (Khalil et al., 2022 ). Therefore, a scoping review was most appropriate to provide an overview of the literature and identify priorities for future research on loneliness in emerging adulthood.

Three key issues are apparent from this review. First, there was a lack of clear conceptualization of loneliness and prioritization of unidimensional conceptualizations of loneliness in emerging adults, which may be related to the measure of loneliness used. Second, despite the volume of research identified, there was a lack of qualitative research exploring the subjective experience of loneliness. This suggests that the relevance of existing conceptualizations of loneliness for emerging adults who have experienced it remains unclear. Third, while a range of risk factors and outcomes for loneliness have been examined in the literature, research tends to be cross-sectional in design and based on convenience samples of university students. Some additional considerations are noted. Relatively few articles explicitly articulated the use of loneliness theory in their research. Relatively few articles reported on sex-gender differences in loneliness; those that did reported mixed results. Finally, loneliness in emerging adulthood is a growing area of research, with some of this growth due to a focus on loneliness in the context of the Covid-19 pandemic.

Definitions of loneliness in included articles tended to align with Perlman and Peplau’s ( 1981 ) widely used definition. Definitions acknowledged both the affective (i.e., the negative emotional experience) and cognitive (i.e., the discrepancy between one’s actual and desired social relations) components of loneliness. A few articles did not explain what is meant by loneliness beyond describing it as perceived social isolation, which does not account for the more complex affective and cognitive aspects of loneliness. While there may be general agreement that loneliness is a subjective emotional experience, the finding that just over half of all articles included a formal definition of loneliness leaves open the possibility that the conceptualization is implicit, poorly understood, or even that loneliness is akin to separate constructs like chosen solitude or objective social isolation. The distinction between concepts like social isolation and loneliness is critical given that across age groups, loneliness is only weakly associated with objective measures of contact with friends and family (Luhmann & Hawkley, 2016 ). A lack of clear definition of loneliness and conflation with other distinct, but related, terms contribute to conceptual confusion which can have practical implications; for example, policy responses designed for lonely people often aim to increase their social connections, therefore reducing social isolation rather than focusing on reducing experiences of subjective loneliness (Wigfield et al., 2022 ).

Other loneliness distinctions potentially relevant for understanding loneliness in emerging adulthood include a multi-dimensional conceptualization of social and emotional loneliness (von Soest et al., 2020 ). These facets are proposed to differentially develop depending on the type of social relationship a person perceives to be inadequate (Weiss, 1973 ). In addition, existential loneliness was described in recent qualitative work as occurring particularly during young adulthood for some individuals (McKenna-Plumley et al., 2023 ). A lack of transparent reporting on the conceptualization of loneliness has important implications for its measurement (Flake & Fried, 2020 ). The finding that few included articles considered different aspects of loneliness, and most did not explicitly discuss whether loneliness was unidimensional or multidimensional, suggests that a unidimensional conceptualization of loneliness is implicit. This is reflected in the frequent use of the UCLA Loneliness Scale (Russell et al., 1980 ), originally designed as a unidimensional measure. Although the UCLA includes items considered to align with social (11 items) and emotional (7 items) loneliness (Maes et al., 2022 ), there is no agreed multi-factorial structure of this measure, and using UCLA subscales may not be the best way of measuring multidimensional loneliness; given studies that report the same number of factors differ in terms of the items that are allocated to which factors and the interpretation of the factors (Maes et al., 2022 ). Additionally, although single-item loneliness measures have shown adequate reliability (Mund et al., 2022 ) and may be useful as brief screening measures in large-scale surveys (Reinwarth et al., 2023 ), few articles reported the use of direct single-item loneliness measures; perhaps because of concerns of potential socially desirable responding. Loneliness measurement is central to the validity of studies examining the risk factors and consequences of the experience in emerging adults (Flake & Fried, 2020 ). Therefore, future research should clearly report the conceptualization and measurement of loneliness.

One approach to achieving consensus on conceptualizations of loneliness in emerging adulthood is through more inductive and exploratory qualitative methods. The only qualitative study eligible for inclusion here focused on young adults living in London’s most deprived areas who described loneliness as being linked to feeling excluded, social media, sadness, and low self-worth (Fardghassemi & Joffe, 2021 ). While this study gives an insight into loneliness in this demographic, the experiences of loneliness for emerging adults more broadly are lacking in the literature. Further, there is a lack of qualitative research exploring the complexities of the life stage more generally (Schwab & Syed, 2015 ). Loneliness is an inherently subjective experience. Qualitative methods allow individuals to describe their experience in their own words and are ideally suited for examining how relevant existing conceptualizations of loneliness are for emerging adults. Exploring the meaning of loneliness for those who have experienced it should be a key research priority; a gap which has been addressed among early adolescents (Verity et al., 2021 ). Although the major features of emerging adulthood may vary between cultures, it is a distinct developmental period of the lifespan (Arnett, 2024 ). To assume emerging adults share the same social roles, developmental tasks, and societal expectations as adolescents underestimates the increased independence, self-focus, and instability (Arnett et al., 2014 ) that may be central to loneliness during this stage. Therefore, qualitative research focused on understanding loneliness within the complexities of the life-stage of emerging adulthood is needed.

Of the articles that explicitly considered loneliness theory, most considered approaches that typically focus on individual level characteristics that may increase a person’s risk for loneliness. For example, the evolutionary theory of loneliness (Cacioppo et al., 2006 ), suggests that younger age groups, due to ongoing development of brain regions associated with cognitive control, may be more sensitive to their social environment and more prone to loneliness beyond the typical features of emerging adulthood (Wong et al., 2018 ). However, societal, and cultural factors are also likely to contribute to loneliness by influencing a person’s social norms (van Staden & Coetzee, 2010 ). The cognitive discrepancy theory emphasizes the role of individual attributes, as well as wider cultural norms in how a person perceives their social relationships (Peplau & Perlman, 1982 ). Theories of loneliness are not mutually exclusive; developing a causal understanding of loneliness in emerging adulthood likely requires the integration of theory. For example, McHugh Power et al. ( 2018 ) synthesized model of loneliness considers both interindividual factors, such as the role of culture in shaping social norms about emerging adults’ social lives, and intraindividual factors, such as changes in the brain regions responsible for social processes, in the development of loneliness. Further, loneliness can be explored within broader theoretical frameworks not specific to loneliness. Developmental approaches can inform research on specific life events and developmental tasks during a particular life stage that may increase a person’s risk of loneliness. For example, employing Erikson’s ( 1968 ) psychosocial theory in research exploring the link between identity formation and loneliness in adolescents and emerging adults (Lindekilde et al., 2018 ).

An age-normative life span perspective suggests that different factors drive loneliness at different ages (Luhmann & Hawkley, 2016 ). For example, peer relations may be more strongly associated with loneliness during adolescence and emerging adulthood, where friendships are their primary social connections, as opposed to older age groups (Qualter et al., 2015 ). This aligns with the finding that family and social relationship factors, such as perceived social support from peers, were the most examined risk factors for loneliness in emerging adulthood in longitudinal studies. Perhaps unsurprisingly, aspects of mental health were the most examined outcomes of loneliness. It is also plausible that poorer mental health predicts or has a reciprocal relationship with loneliness during emerging adulthood; emerging adults with depressive symptoms may withdraw from their social relationships or perceive more social rejection (Achterbergh et al., 2020 ). Despite examining a range of loneliness risk factors and outcomes, included studies were mostly cross-sectional and conducted in Western countries with convenience samples comprising university students. Therefore, the third key issue with this literature highlights the persistent sampling bias and lack of representation and diversity in the field (Nielsen et al., 2017 ).

Sex-gender differences are also important for understanding who is vulnerable to loneliness. Most studies reported no significant difference. A small number reported a significant difference, mostly reporting higher loneliness among females. Gender differences in loneliness have been hypothesized to emerge in adolescence, where females may be more at risk of adolescent-onset internalizing problems (Martel, 2013 ). However, a meta-analysis reported a significant, but small, effect of gender on loneliness in young adulthood, finding greater loneliness in males (Maes et al., 2019 ). The variation of findings in studies examining sex-gender differences have long been attributed to differences in how loneliness is assessed (Borys & Perlman, 1985 ). Given that few a-priori hypotheses on gender differences in loneliness have been proposed (Maes et al., 2019 ), future research should report analysis examining sex-gender differences to determine whether sex-gender represents a vulnerability factor for loneliness.

Finally, the findings suggest that loneliness in emerging adulthood is a fast-growing area of research; almost half of all included articles were published in the years 2020 and 2021. Some of this growth was due to the Covid-19 pandemic making the issue of loneliness in younger age groups even more salient than before (Holt-Lunstad, 2021 ). Although not all who are socially isolated are lonely (Luhmann & Hawkley, 2016 ), this increased focus on loneliness is unsurprising considering that response measures aimed at mitigating the spread of Covid-19, like social distancing orders, and remote work and education, resulted in less social contact and greater social isolation. One systematic review comparing loneliness before and during the Covid-19 pandemic found an increase in loneliness in younger participant groups (Ernst et al., 2022 ). However, this increase was from studies including only university student samples; how the pandemic has impacted loneliness during emerging adulthood more generally remains unclear. The theory of emerging adulthood describes a range of developmental transitions to achieve adulthood, such as moving out of the parental home (Arnett, 2024 ). For some emerging adults, Covid-19 measures may have halted or even reversed steps towards adulthood, resulting in increased loneliness. For example, emerging adults forced to relocate from college campuses to live with parents and guardians experienced greater loneliness than those who did not relocate (Conrad et al., 2021 ). Life events that impact the achievement of normative social transitions and result in some emerging adults feeling out of sync may be important to consider in the development of loneliness during emerging adulthood.

Strengths and Limitations

The strengths of this review included preregistration of the protocol on Open Science Framework and rigorous methodology following well-established scoping review guidelines (Peters et al., 2015 ). One potential limitation is the inclusion criteria that articles needed to report a mean age of 18–25 years. This age range is sometimes extended to age 29; however, 18–25 years is appropriate when conservative age ranges are required to describe emerging adulthood (Arnett, 2024 ). Although a large volume of articles was included, the year limit and lack of grey literature means that there is a possibility that relevant research was not included in this review. While articles were not excluded based on geographical location, included articles were limited to those published in or translated to the English language only, potentially influencing this review’s results.

Future Research

Based on these findings, future studies should provide a clear conceptualization of loneliness, including articulation of loneliness as a uni- or multi-dimensional construct. Studies should specify the theoretical approach (if any) that is informing the research. To generate a clearer understanding of sex-gender differences, these should be reported.

Regarding broad research priorities for loneliness, given the skew towards cross-sectional convenience samples of Western, educated emerging adults, longitudinal research that is population-based or focuses on under-studied cohorts should be prioritized. The current literature does not adequately explore the emergence of specific forms of loneliness, the predictors of loneliness development, and the long-term outcomes of emerging adult loneliness. Developmental trends, the stability of loneliness, and the factors associated with interindividual differences in loneliness during emerging adulthood appear to have also been neglected. Previous research underscores the importance of identifying the characteristics of emerging adults more likely to develop loneliness and the factors that, when changed, correspond to changes in loneliness (Mund et al., 2020 ). Therefore, longitudinal research should seek to identify emerging adults most at risk of developing sustained or intensely felt loneliness in response to common life events, like finishing school. Also, identifying emerging adults who are at risk of loneliness due to developmental transitions being halted or reversed is a consideration for future longitudinal research. Given potential cultural differences in the markers of adulthood and developmental tasks of emerging adulthood (Nelson & Luster, 2015 ), research should consider cultural norms in the relationship between social transitions and loneliness during this life stage.

The high prevalence of loneliness during emerging adulthood indicates that loneliness is an issue of importance requiring good quality research. However, no review has provided an overview of key aspects of the literature on loneliness in emerging adulthood. This scoping review provided a descriptive summary of 201 articles on loneliness in emerging adulthood and serves as an initial step highlighting issues with the current research and identifying priorities for future research. Specifically, findings suggest the need for a clearer consensus in the literature regarding the conceptualization of loneliness during emerging adulthood. Second, this review highlights the need for more qualitative work exploring young people’s subjective experiences of loneliness, which is key for understanding the complexities of loneliness during emerging adulthood. Finally, the results indicate that this literature needs fewer cross-sectional studies using convenience samples and more population-based, longitudinal research to understand the factors predicting loneliness over time, and the downstream impact of loneliness for emerging adults.

Data Availability

All data collected for this study were obtained from published peer-review literature. Data extracted to inform this review are available on reasonable request from the corresponding author.

Articles included in the scoping review are marked with (•)

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•Besse, R., Whitaker, W. K., & Brannon, L. A. (2022). Reducing loneliness: The impact of mindfulness, social cognitions, and coping. Psychological Reports, 125 (3), 1289–1304. https://doi.org/10.1177/0033294121997779

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The authors gratefully acknowledge the editor of Adolescent Research Review and anonymous reviewers for their helpful feedback.

Open Access funding provided by the IReL Consortium. The first author is in receipt of an Irish Research Council Government of Ireland Postgraduate Scholarship (GOIPG/2021/345). The sponsor had no role in the study design, analysis, interpretation of the data, or writing of the article.

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Emma M. Kirwan, Páraic S. O’Súilleabháin, Sarah Summerville, Máire McGeehan, Jennifer McMahon & Ann-Marie Creaven

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EMK conceived of the study, participated in study design, coordination, and interpretation of the data, and drafted the manuscript; AB conceived of the study, participated in study design and coordination, and drafted the manuscript; PSO’S conceived of the study, participated in study design and coordination, and drafted the manuscript; SS performed data screening and drafted the manuscript; MMG performed data screening and charting, and drafted the manuscript; JMM contributed to study conceptualization, methodology, and drafted the manuscript; AG performed data screening and drafted the manuscript; AMC conceived of the study, participated in study design, coordination, and interpretation of the data, and drafted the manuscript. All authors read and approved the final manuscript.

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Kirwan, E.M., Burns, A., O’Súilleabháin, P.S. et al. Loneliness in Emerging Adulthood: A Scoping Review. Adolescent Res Rev (2024). https://doi.org/10.1007/s40894-024-00240-4

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DOI : https://doi.org/10.1007/s40894-024-00240-4

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