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Ethical considerations associated with Qualitative Research methods

Introduction.

This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.  

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.  

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.  

The guidance is divided into several parts.    

• An introduction to qualitative research and why ethics matters in this space.   
• An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.  
• An ethics checklist which summarises the main points covered in this guidance.    
• A list of helpful links to further resources.   

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The SAGE Handbook of Qualitative Research Ethics

• Ron Iphofen
• Martin Tolich - University of Otago, New Zealand
• Description

Part One: Thick Descriptions Of Qualitative Research Ethics Part Two: Qualitative Research Ethics By Technique Part Three: Ethics As Politics Part Four : Qualitative Research Ethics With Vulnerable Groups Part Five: Relational Research Ethics Part Six: Researching Digitally

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This is a landmark collection in the field of qualitative research ethics, and a Handbook with a key message.  The contributions are full of insights about ethical issues in diverse research contexts, populations and methods. Taken together they build the case for an institutional approach to ethical review for qualitative research that can deal with specificity and complexity.  Iphofen and Tolich’s Handbook will be richly informative for academic researchers but it should be required reading for ethics committee members. 

I doubt there are many, if any, qualitative researchers who are not mindful of the ethical responsibilities they bear when investigating social situations. These responsibilities go far beyond the procedural requirements of ethics reviews and require careful thought and on-going review. By considering various ethical perspectives whilst reflecting the diversity of qualitative approaches and techniques, the contributions to this handbook demonstrate the need to treat each research endeavour as a unique instance, requiring a unique ethical response. In doing so it offers a valuable resource to both experienced researchers and those who are just starting out alike.

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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on October 18, 2021 by Pritha Bhandari . Revised on May 9, 2024.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviors, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to

• protect the rights of research participants
• enhance research validity
• maintain scientific or academic integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, other interesting articles, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research objectives with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

Prevent plagiarism. Run a free check.

Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process , so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

You make sure to provide all potential participants with all the relevant information about

• what the study is about
• the risks and benefits of taking part
• how long the study will take
• your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymize data collection . For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymization is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

• Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
• Social harm: Participation can involve social risks, public embarrassment, or stigma.
• Physical harm: Pain or injury can result from the study procedures.
• Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources or counseling or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine academic integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

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

• Normal distribution
• Measures of central tendency
• Chi square tests
• Confidence interval
• Quartiles & Quantiles
• Cluster sampling
• Stratified sampling
• Thematic analysis
• Cohort study
• Peer review
• Ethnography

Research bias

• Implicit bias
• Cognitive bias
• Conformity bias
• Hawthorne effect
• Availability heuristic
• Attrition bias
• Social desirability bias

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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Ethics in Qualitative Research

• First Online: 01 December 2017

Cite this chapter

• Sylwia Ciuk 4 &
• Dominika Latusek 5  

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In this chapter, we explore a number of ethical questions and ethical dilemmas that can arise at different stages of the research process. Rather than attempting to provide an answer to these or a full overview of the ethical issues encountered by researchers, we aim to sensitize the reader to some of the complexities involved in trying to do qualitative research in an ethically sensitive manner. We see ethics not as a uniform set of rules or a formal institutional requirement but rather as an integral element of research praxis. We therefore consider a number of ethical questions that are likely to arise at different stages of the research process and alert the reader to some ethically important moments that they might encounter. We start by looking at some ethical questions linked to the research design. We then turn to discussing ethical challenges associated with negotiating access, trying to obtain informed consent from participants as well as maintaining and managing relationships with them. We conclude by discussing ethical issues in relation to data presentation.

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Qualitative Research: Ethical Considerations

Taking Ethics Seriously

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Ciuk, S., Latusek, D. (2018). Ethics in Qualitative Research. In: Ciesielska, M., Jemielniak, D. (eds) Qualitative Methodologies in Organization Studies. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-65217-7_11

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The Ultimate Guide to Qualitative Research - Part 1: The Basics

• Introduction and overview
• What is qualitative research?
• What is qualitative data?
• Examples of qualitative data
• Qualitative vs. quantitative research
• Mixed methods
• Qualitative research preparation
• Theoretical perspective
• Theoretical framework
• Literature reviews
• Research question
• Conceptual framework
• Conceptual vs. theoretical framework
• Data collection
• Qualitative research methods
• Focus groups
• Observational research
• Case studies
• Ethnographical research
• Introduction

What are research ethics?

Informed consent in qualitative research, trust in the researcher-participant relationship, navigating the ethics review board.

• Confidentiality and privacy
• Power dynamics
• Reflexivity

Ethical considerations in qualitative research

Qualitative research often involves the researcher working with and collecting data from people. This raises critical ethical concerns that all qualitative researchers should keep in mind. This article will discuss the topic of informed consent , but other issues of privacy, confidentiality , and trust, among other considerations, also require careful consideration.

Ethics generally refer to the principles of right and wrong that guide an individual or a group. In the context of research, ethics are the standards and guidelines that dictate acceptable conduct during the research process, ensuring that researchers act in a manner that protects the rights, dignity, and welfare of the participants involved.

In qualitative research , the importance of ethics becomes more nuanced due to the deeply personal and subjective nature of the methods used. Qualitative researchers often engage in prolonged, intimate interactions with participants and immerse themselves in the participants' settings, sometimes even their lives. As such, the potential for ethical dilemmas or conflicts can be heightened, making a comprehensive understanding of ethics crucial for qualitative researchers.

What are the ethical considerations in qualitative research?

A critical aspect of research ethics is respect for persons. This principle emphasizes recognizing and respecting the autonomy of research participants, acknowledging their capacity to make decisions about their involvement in the research. It also involves providing special protection for individuals with diminished autonomy who may be vulnerable to coercion or undue influence, such as children, prisoners, or individuals with cognitive impairments.

Beneficence, another key ethical principle, is about maximizing potential benefits for the research participants and minimizing potential harm. In the qualitative research context, potential benefits might include contributing to new knowledge, enhancing understanding of a phenomenon, or informing policy or practice changes. Potential harm might involve psychological distress, invasion of privacy, stigmatization, or misuse of data.

Justice, a third core principle, involves ensuring a fair distribution of the benefits and burdens of research. This means carefully considering the selection of participants to avoid exploiting vulnerable groups or excluding others without justification.

Lastly, qualitative researchers also need to consider the principle of fidelity, which involves being honest and transparent, fulfilling promises, and establishing and maintaining trust with participants. These principles are not meant to be exhaustive, nor are they universally applicable without consideration of context. In fact, one of the complexities of qualitative research is that ethical considerations often have to be balanced and negotiated in light of the specific circumstances of each study. What's ethical in one study might not be in another, and this underpins the importance of researchers being reflective and responsive to the ethical dimensions of their work.

Why do research ethics matter?

It's important to note that ethics in qualitative research are not merely about compliance with formal ethical guidelines or approval from ethics review boards. While these are necessary, ethics in qualitative research go beyond this, requiring researchers to continually negotiate ethical issues throughout the entire research process, from design to dissemination . Understanding and adhering to ethical principles in qualitative research not only protects the participants but also enhances the quality of the research, as it encourages thoughtful and respectful engagement with the research process and its stakeholders. It is a fundamental part of responsible and credible research practice.

Informed consent is a cornerstone of ethical research practice. In practice, consent is such a necessary practice that universities and national institutes often require it to be outlined in the research proposal before ethical approval is granted. At the same time, journals often prohibit the publication of research findings if consent is not obtained. Consent is not merely the act of simply getting a participant to sign a form. It involves a clear and detailed understanding on the part of both the researcher and research subject regarding the nature of the research and how it is to be conducted. This section will discuss the importance of informed consent, the process of obtaining it, and the challenges and strategies involved in ensuring its proper implementation.

What is informed consent?

Informed consent is the process by which a research participant voluntarily confirms their willingness to participate in a particular study after having been informed of all aspects of the research that are relevant to their decision. It is a fundamental ethical obligation for all researchers, grounded in the principle of respect for persons, which recognizes the rights of individuals to autonomy and self-determination.

Importance of informed consent

Informed consent ensures that participants are not coerced or deceived into participating in a study. It upholds the principles of autonomy and respect for persons by recognizing and affirming the right of individuals to control what happens to them. Additionally, consent helps protect the researcher and the institution conducting the research by providing evidence that participants have voluntarily agreed to participate and understand the nature of the research and how the researcher intends to conduct research.

As a matter of medical research and biomedical research, consent is an outright necessity where people's health and welfare are concerned. The World Medical Association Declaration of Helsinki requires research participants to be treated with respect and given opportunities to make informed decisions. The principles outlined in the Helsinki Declaration prevent unscrupulous researchers and practitioners from preying on research subjects, no matter how beneficial the research aims might be.

Process of obtaining informed consent

The process of obtaining consent involves several key steps. First, researchers must provide potential participants with clear, detailed, and understandable information about the study. This includes information about the purpose of the research, what participation will involve, the potential benefits and risks, the safeguards that will be in place to protect confidentiality , the voluntary nature of participation, and the participant's right to withdraw at any time without penalty.

Once this information has been provided, researchers should give potential participants sufficient time to consider whether they wish to participate and ask the researcher any questions if they need further clarification. Researchers should then obtain explicit confirmation from participants that they have understood the information and agree to participate. This can be done verbally with an audio recording, but it is typically documented in a written consent form that the participant signs. It is important to save the documents and/or audio recordings as proof of having obtained consent (e.g., research review boards or academic journals may ask for such proof).

Challenges and strategies in ensuring consent

Obtaining consent in qualitative research can present several challenges. For instance, the iterative nature of many qualitative research designs means that the specifics of the research may evolve over time, making it difficult to provide complete information at the outset. Moreover, certain participant groups may have difficulty understanding the consent information due to language barriers, low literacy levels, or cognitive impairments.

In response to these challenges, researchers can adopt several strategies. For evolving research designs, researchers can commit to a process of ongoing consent, where they continually update participants about changes and check their continued willingness to participate.

For participant groups with comprehension difficulties, researchers can use simplified language, visual aids, or third-party intermediaries to help explain the consent information. In some cases, researchers may also need to seek consent from legally authorized representatives while still involving the participants as much as possible in the consent process.

Despite its challenges, researchers must make every effort to ensure that participants understand the research and voluntarily agree to take part. This not only respects participants' rights but also contributes to the overall quality and credibility of the research.

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Privacy and confidentiality in qualitative research

In qualitative research, ensuring privacy and confidentiality is paramount. As researchers frequently deal with sensitive data about individuals, it's crucial to respect and protect participants' rights to privacy and ensure the confidentiality of their information. This section will detail the concepts of privacy and confidentiality, the methods to maintain them, and the associated challenges in qualitative research.

Understanding privacy and confidentiality

Privacy and confidentiality, although related, are two distinct concepts in research ethics. Privacy pertains to an individual's right to control the extent, timing, and circumstances of sharing oneself with others. It is linked to notions of personal space and seclusion.

On the other hand, confidentiality relates to the agreement between the participant and the researcher about how the participant's information will be handled, used, and disseminated. It involves an assurance that personal information shared for the purposes of the research will not be disclosed in a way that allows the identification of the participant without their permission.

Methods for maintaining privacy and confidentiality

Several methods can be employed to maintain privacy and confidentiality in qualitative research. During data collection , privacy can be respected by conducting interviews or observations in private settings where the participant feels comfortable and by asking only questions that are necessary for the research.

Personal identifiers can be removed or disguised in transcripts, reports, and publications to ensure confidentiality. Data can be securely stored, and access can be limited to only the necessary members of the research team. Additionally, researchers can use pseudonyms instead of real names in their reports to further ensure that participants cannot be identified.

In certain situations, a technique called data aggregation can be employed. This involves presenting data in a way that represents groups of people rather than individuals, thus minimizing the risk of identification.

Challenges in ensuring privacy and confidentiality

Despite these methods, ensuring privacy and confidentiality can present challenges. Given the depth and detail often involved in qualitative data, even when identifiers are removed or disguised, participants may still be recognizable based on the context or content of their information.

There's also a potential conflict between maintaining confidentiality and providing rich, detailed descriptions, which is a hallmark of qualitative research . Furthermore, in small or close-knit communities, anonymity can be particularly challenging to maintain, as participants might be identifiable simply based on the nature of their experiences or roles.

In response to these challenges, it's important for researchers to have open and ongoing discussions with participants about privacy and confidentiality issues. They should negotiate what information is off-limits and continuously seek consent as more personal or sensitive data emerges. Researchers need to strike a balance between providing a rich, detailed account of the data and protecting their participants' identities.

The establishment of trust in the researcher-participant relationship is a fundamental aspect of qualitative research. Trust can influence the quality and depth of the data gathered, as participants are more likely to share honest and detailed information if they trust the researcher.

The importance of trust in qualitative research

Trust is foundational to successful qualitative research. Researchers often delve into personal, sometimes sensitive, topics. As a result, the participants' willingness to share depends largely on the level of trust established between them and the researcher. Trust can enhance participant engagement and willingness to participate, which can, in turn, enrich the quality of the data gathered. Moreover, the ethical integrity of the research process is often judged by the degree of trust that participants place in researchers.

Strategies to build and maintain trust

Building and maintaining trust with research subjects requires careful attention and ongoing effort. The process typically begins with clear, transparent communication about the research purpose, procedures, benefits, and risks, which can foster initial trust.

A key strategy for building trust is demonstrating respect for participants and their experiences. This includes honoring their time, listening carefully to their responses, and validating their experiences and feelings. Showing empathy and understanding can also enhance trust, particularly when discussing sensitive topics.

Additionally, maintaining confidentiality , as discussed in the previous section, is crucial for building and maintaining trust. If participants are confident that their information will be kept confidential, they are more likely to trust the researcher and share openly.

Ensuring that the research benefits the participants or their community in some way can also contribute to trust. This could include producing knowledge that addresses a community concern, providing a platform for participants' voices to be heard, or translating research findings into actions or interventions that benefit the participants.

Consequences of trust violation

Violations of trust can have severe consequences in qualitative research . Participants may withdraw from the study, refuse to provide further information, or provide false or misleading information. Trust violations can also harm the reputation of the researcher and their institution, impede future research efforts, and, in some cases, could lead to formal complaints or legal action.

Thus, it's essential for researchers to be aware of the importance of trust and make conscious efforts to build and maintain it throughout the research process. By doing so, they can foster more meaningful and productive relationships with their participants, leading to richer data and more impactful research findings.

Vulnerability and power dynamics in qualitative research

In qualitative research, it is crucial to recognize and address the potential vulnerability of participants and the power dynamics that exist between researchers and participants. These issues are at the heart of many ethical considerations in research.

Vulnerable populations in qualitative research

Vulnerable populations in research refer to groups of individuals who may be at a higher risk of exploitation or harm due to certain characteristics or circumstances. These might include children, older adults, prisoners, people with cognitive or mental health impairments, people with low socio-economic status, or people experiencing homelessness, among others.

Vulnerable individuals may have limited autonomy, be less able to understand or consent to research participation, or be more susceptible to harm from the research. Researchers need to exercise particular care when including vulnerable individuals in research to ensure that they are not exploited and that their rights and welfare are protected. As a general rule, protecting the rights and agency of vulnerable groups takes priority over data collection.

Power dynamics between researchers and participants

Power dynamics in qualitative research refer to the imbalance of power that often exists between researchers and participants. Researchers usually hold a position of power in the research relationship, as they determine the research design, control the data collection and analysis process, and decide how the findings are reported. This power imbalance can influence participants' experiences and responses in the research and can potentially lead to exploitation or harm.

For instance, participants might feel pressured to participate in the research, to answer questions they are uncomfortable with, or to disclose more information than they would like, due to the perceived power of the researcher. They might also fear potential repercussions if they withdraw from the research or provide negative feedback.

Strategies for minimizing power imbalances

To minimize power imbalances, researchers can adopt several strategies. These can include involving participants in the research process, known as participatory research methods. For instance, researchers can involve participants in designing the research questions, selecting the methods, analyzing the data, or disseminating the findings .

Researchers can also aim for transparency in all research procedures, continually inform participants of their rights, and reinforce the voluntary nature of participation. It's also crucial to approach participants with respect and humility, acknowledging their expertise in their own experiences and valuing their contributions to the research.

Moreover, in the case of vulnerable populations, additional safeguards might be necessary. These could include obtaining consent from a legally authorized representative, using simplified language or visual aids to explain the research, ensuring that participation does not exacerbate the individuals' vulnerability, and providing additional support or resources as needed.

Institutional Review Boards (IRBs), or Ethics Review Boards, are formal ethics committees that review all research involving human subjects. The aim of these committees is to ensure that the proposed research studies adhere to ethical guidelines regarding human subjects protection. An ethics committee protects the rights, safety, and well-being of the participants in research. Navigating the review process can be complex, but understanding its purpose and procedures can help researchers to ensure their studies meet the necessary ethical standards.

Purpose of the ethics review board

The primary purpose of an ethics review board is to protect human subjects from potential harm. Boards review research proposals to ensure that the studies are designed and will be conducted ethically, respecting the principles of informed consent , confidentiality , and protection of vulnerable populations, among others. They also aim to ensure that the potential benefits of the research outweigh any risks to participants.

Getting ethical approval for your study

To prepare for a review from an institutional review board, researchers should familiarize themselves with the specific guidelines and procedures of their institution's review board. This usually involves developing a detailed research proposal that outlines the study's purpose, methods , participant recruitment, consent procedures, data handling practices, and measures to protect participants' rights and welfare.

Researchers should also prepare to address potential ethical issues that might arise in their study. This involves thinking through potential risks to participants, how these risks will be mitigated, and how any unexpected ethical issues will be handled.

The review process and responding to feedback

Once a research proposal is submitted to the ethics review board, it undergoes a process of review. The board members assess the proposal for potential ethical issues and decide whether to approve the study, request modifications, or reject the study. This process can take several weeks or months and may involve several rounds of feedback and revisions.

If the board requires modifications, researchers should carefully review the feedback, make the necessary changes to their proposal, and provide a clear rationale for these changes when resubmitting the proposal. It's important to view this process as a constructive dialogue aimed at enhancing the ethical quality of the research rather than a hurdle to overcome.

Conducting the study and post-study considerations

Once the study is approved, researchers should conduct the study as outlined in their approved proposal. Any significant changes to the study design or procedures should be reported to and approved by the review board.

After the study is completed, researchers may need to submit a final report to the review board, outlining how the study was conducted and how any ethical issues were handled. Researchers should also be prepared to address any ethical issues that arise during data analysis, reporting, or dissemination and may need to seek further guidance from the review board in these cases.

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• v.7(2); 2018 Apr

Ethical dilemmas and reflexivity in qualitative research

Anne-marie reid.

1 Leeds Institute of Medical Education, University of Leeds, Leeds, UK

Jeremy M. Brown

2 Postgraduate Medical Institute, Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, UK

Julie M. Smith

3 Nuffield Orthopaedic Centre, Oxford, UK

Alexandra C. Cope

4 Frimley Health NHS Foundation Trust, Surrey, UK

Susan Jamieson

5 School of Medicine, Dentistry & Nursing, Glasgow University, Glasgow, UK

For medical education researchers, a key concern may be the practicalities of gaining ethical approval where this is a national or local requirement. However, in qualitative studies, where the dynamics of human interaction pervade, ethical considerations are an ongoing process which continues long after approval has been granted. Responding to ethical dilemmas arising ‘in the moment’ requires a reflexive approach whereby the researcher questions his/her own motivations, assumptions and interests. Drawing on empirical studies and their experiences in academic and clinical research practice, the authors share their reflections on adhering to ethical principles throughout the research process to illustrate the complexities and nuances involved.

Objectives and findings

These reflections offer critical insights into dilemmas arising in view of the ethical principles driving good conduct, and through domains which distinguish between procedural ethics, situational ethics, ethical relationships and ethical issues in exiting the study. The accounts consider integrity and altruism in research, gatekeeping and negotiating access, consent and confidentiality, power dynamics and role conflict, and challenges in dissemination of findings. The experiences are based on a range of examples of research in a UK context from managing difficult conversations in the classroom to video-ethnography in the operating theatre.

Discussion and conclusions

These critical reflections make visible the challenges encountered and decisions that must be taken in the moment and on reflection after the event. Through sharing our experiences and debating the decisions we made, we offer insights into reflexivity in qualitative research which will be of value to others.

A Qualitative Space highlights research approaches that push readers and scholars deeper into qualitative methods and methodologies. Contributors to A Qualitative Space may: advance new ideas about qualitative methodologies, methods, and/or techniques; debate current and historical trends in qualitative research; craft and share nuanced reflections on how data collection methods should be revised or modified; reflect on the epistemological bases of qualitative research; or argue that some qualitative practices should end. Share your thoughts on Twitter using the hashtag: #aqualspace

Introduction and context

The importance of procedural ethics, gaining initial approvals for research studies, is well-established and guided by the principles enshrined in the Declaration of Helsinki and the Nuremberg code [ 1 ]. Ethical approval procedures are often viewed as a ‘hurdle’ to be surmounted, and arguably overshadow full consideration of the challenges of process ethics, the ethical tensions and dilemmas which arise throughout the practice of research. This paper aims to bring insights into ethical dilemmas which permeate research at all stages, from initial approval through data collection, dissemination of the findings and exiting the study [ 2 ]. These insights, developed from the authors’ personal accounts of their own practices, are derived from a range of experiences of medical education research in different settings.

Procedural ethics in medical education is guided by the codes of practice devised by education research bodies such as the British Educational Research Association (BERA) and the American Educational Research Association (AERA). These codes are applied by ethics committees who provide scrutiny at a national or local level depending on the context and nature of the research. For example, in the Netherlands, a national framework to review medical education research has been developed by the Ethical Review Board of the Dutch Association for Medical Education (NVMO) [ 3 ]. In the UK, ethical scrutiny is conducted under the auspices of university ethics committees, except where there is patient involvement, in which case clinical ethics committees are involved.

Until relatively recently, medical education research has been given something of a rough ride by ethics committees more used to considering clinical interventional research [ 4 ], although such committees are now becoming more familiar with educational research and the ethical issues arising. Guidelines for ethical behaviour are based on the philosophical principles of beneficence , do good; non-maleficence, do no harm; respect for autonomy, self-determination; and equity, treat fairly [ 5 ]. These principles are intended to guide thinking in applying for ethical approval by encouraging researchers to anticipate the ethical tensions and dilemmas which might arise during the study.

Guiding principles

The formulation of ethical research principles is based on the deontological approach proposed by Kant [ 6 ], whereby moral duty should be guided by principles which transcend circumstances. The utility of these principles in guiding practice is subject to critique on the basis that they may encourage following the ‘letter’ rather than the ‘spirit’ of the principle, or may in fact be too restrictive, limiting the scope and value of the research [ 7 ]. In addition, the consequences of research outputs are not entirely within the control of the researcher, and so the principle of non-maleficence, do no harm, may be difficult to achieve in all cases [ 8 ].

Guillemin and Gillam [ 9 ] distinguish between the domains of procedural ethics (gaining approval) and that of process ethics (ethics in the course of practice). In doing so they recognize that ethics are essentially situational, and that ethically sensitive issues occur ‘in the moment’ as research unfolds [ 7 , 9 ]. Tracy [ 2 ] elaborates further in proposing four domains to guide thinking; procedural ethics (approval processes), situational ethics (the research context), ethical relationships (dynamics between the researcher and participants) and ethical issues in exiting the study (completion and disseminating findings). This approach recognizes the ongoing, unanticipated challenges which might arise beyond gaining approval for the study and which require a high degree of researcher ‘reflexivity’ in responding ethically.

Shacklock and Smyth [ 10 ] describe reflexivity as the conscious revelation of the underlying beliefs and values held by the researcher in selecting and justifying their methodological approach. From an epistemological perspective, a reflexive approach recognizes knowledge as constructivist, developed throughout the research process and contingent upon existing understandings and beliefs [ 11 ]. Transparency about the researcher’s position and potential biases and assumptions is vital in judging accounts of qualitative research and the authenticity of the findings. This paper seeks to illustrate reflexivity in managing ethical tensions and dilemmas through accounts of ‘practitioner-researchers’, that is, those with a role in academic or clinical practice who also conduct research.

This researcher position is one with a working knowledge of the field of study, a shared identity with participants, sensitivity to competing priorities and as one known to participants outside of the researcher role. This practitioner-researcher position is valuable in developing practice insights. However, it may equally bring assumptions and biases which have ethical implications but which are not commonly made explicit in medical education research. The authors seek to address this by offering critical insights into their personal ethical dilemmas drawing on the ethical principles proposed by Beauchamp and Childress [ 5 ], and with reference to the framework proposed by Tracy [ 2 ]. As stated, the latter concerns procedural ethics (formal approval procedures), situational ethics (issues arising specific to context), relational ethics (awareness of researcher actions on others) and exiting ethics (considerations arising beyond data collection). The authors’ accounts (indicated by their initials) include gatekeeping and negotiating access in procedural ethics, debated by JB and SJ; questions of consent and confidentiality in situational ethics experienced by AC; power dynamics and role conflict in ethical relationships debated by AMR and JS and issues of confidentiality and anonymity which challenged AC in dissemination of her findings.

Procedural ethics

Procedural ethics, the formal approvals required for a study to commence, are dependent on the justification for the study and a stated commitment to adherence to ethical principles. Even before embarking on the formal application, the good intentions of the research need to be carefully weighed up against the vested interests of the researcher involved. Tracy [ 2 ] advocates that researchers practise (self-) reflexivity ‘even before stepping into the field … [to assess] … their own biases and motivations’ (P. 842). An illustration of this is provided by JB, an experienced academic and researcher in postgraduate medical education. He reflects on his role conflict as gatekeeper in pursuit of integrity and altruism in research practice. Gatekeepers are those who give access to a research field, or, ‘are able to control or limit researchers’ access to the participants’ [ 12 , P. 452]. Another aspect of the gatekeeper’s dilemma is described by SJ in relation to her role in managing the research of others. This follows JB’s story.

Integrity and altruism

JB: The Universities UK ‘Concordat to Support Research Integrity’ [ 13 ] calls for integrity and research excellence throughout the duration of a project. However, one, often hidden complexity, concerns the personal motivation of the researcher, a troubling question for me in leading a research program funded by a postgraduate medical department. Despite beneficent intentions and careful adherence to research governance processes, I retain lingering doubts as to the extent to which hidden coercive influences impact on participant recruitment.

Medical education research is relatively poorly funded and time pressured as many researchers are practitioners with substantial academic and/or clinical roles and responsibilities. As such, these researchers need to reflect upon, and be transparent about, their competing interests [ 14 , 15 ]. Although this issue has been highlighted for some time in the field, change has been slow, as evidenced by the relatively low number of competing interests disclosed in a survey of medical education related journals [ 16 ]. Walsh [ 17 ] suggests that medical education researchers may not deliberately fail to disclose, but rather fail to recognize their own competing interests due to the ‘bias blind spot’.

Bearing this in mind, I am conscious of relying heavily on the goodwill of participants with whom I may have relationships before, during and after the study. I believe that the participant should be exercising judgement based on the validity of the study in which they are consenting to participate, rather than on that relationship. Despite the best intentions to contribute to new knowledge, there must be an open and honest realization that research outputs are key benchmarks to measure how effectively researchers are performing. This dilemma was brought home to me while teaching postgraduate students, one of whom posed the question, ‘Can research ever be truly altruistic?’

Initially I was unsure of how to respond, but on reflection, admitted that in my experience, despite endeavouring to be honest and truthful to our participants, there may be a conflict between our personal motivations as researchers and reliance on the goodwill of participants. These reflections are unlikely to lead to any dramatic changes in practice; however, recognizing this potential conflict can at least remind us never to take for granted the commitment of willing participants.

Protection versus paternalism

SJ: Balancing the aims of beneficence, the value of research to the medical education community, with the principle of non-maleficence, avoiding harm, is an ethical conundrum which I have frequently encountered in managing an undergraduate medical education program. As a member of the medical education research community I am keen to support research, but am conflicted when faced with frequent requests to include our students as study participants. This particularly arises with survey research which is often the subject of such requests. The issue of survey fatigue is well-recognized [ 18 ], so much so, that my institution instigated a policy to restrict this [ 19 ]. The policy aims to prevent survey fatigue and ensure that students remain well-disposed to completing important internal and external surveys including the National Student Survey [ 20 ], the results of which are important key performance indicators for the institution.

On becoming director of a masters’ program in health professions education, tensions arising from my role as gatekeeper were exacerbated. The needs of the postgraduate students to recruit study participants potentially conflicted with the interests of the undergraduates. The availability of undergraduates as study material for postgraduate students and career academics is not new, and two decades ago undergraduate psychology students were described as ‘a captive population with little power’ [ 21 P. 74]. In a similar vein, Keune et al. [ 22 ] noted ethical issues arising in a scenario whereby a surgical resident introduced a mandatory team/trauma simulation training session. There was no indication that this session was also the basis of a research study until the trainees were presented with consent forms on arrival, clearly suggesting possible coercion. Another study explored the motivation of Indian medical students to participate in research conducted in their university and hospital learning environments [ 23 ]. Of the 300 participants, 61% admitted to participating against their genuine wishes, of which 26% agreed because a faculty member had asked them and 4% because they had not appreciated the right to refuse.

These examples demonstrate a tension between protecting potential participants and respecting their autonomy to choose whether or not to participate in research. One solution as gatekeeper may be to give agreement for participants to be recruited via a general email to a whole cohort, but prohibit purposive sampling of a specific group who may feel more pressurized. Managing access to students as participants highlights for me the ‘grey area’ between protecting the vulnerable and behaving paternalistically in upholding ethical principles.

Situational ethics

After formal approval and access has been granted, unanticipated ethical questions may arise due to the specific nature of the research setting [ 1 ]. In clinical settings data collection occurs within the course of clinical practice which brings specific challenges. AC, a colorectal surgeon whose doctoral research investigated teaching and learning in the operating theatre grappled with issues of consent in the context of patient autonomy.

Issues of consent in the operating theatre

AC: My research followed principles of naturalistic inquiry [ 24 ], capturing the phenomenon of teaching and learning in the operating theatre, as it happened, through ethnographic observation, video and audio-recordings [ 25 ]. One challenge of capturing naturalistic data is gaining prior consent of participants, as it can be difficult to predict who may be co-present within an operating theatre. In my study there was potential for inadvertent participants to be captured during data collection, defiling the research principle of autonomy—the right to determine participation or non-participation [ 5 ].

One approach to uphold autonomy was in the choice of microphone for audio capture: the ‘XTag RevoMic’ which has a short capture range. This meant that talk at the operating table of consenting participants was recorded but that others entering the operating theatre were not inadvertently recorded. The recording was taken from a camera placed within the operating lamp for open surgery, and from a laparoscopic (internal body) camera so that the site of the operation was captured but not the faces of those present. Assurance of this was key to maintaining trust between myself as researcher and the clinical teams involved.

Potential patient participation in the study also raised issues of autonomy. The study explored interactions between surgeon and trainee, but the patient’s body cavity formed the backdrop for video recordings of hand movements and the interactions involved. This meant that the patient would be co-present during the data collection episode although under anaesthetic. Murphy and Dingwall [ 26 ] state that ‘one must distinguish between those for whom the research is likely to be consequential and those who are tangential to it’. The ethics committee deemed that patient participants were peripheral, and that for this non-interventional research, patient consent was not required. General Medical Council (GMC) guidance specifies that doctors may use recordings such as laparoscopic video streaming or images of internal organs for secondary purposes (such as research), without seeking consent from patients, provided that the recordings are captured as part of patient care and are anonymized [ 27 ]. In this study recordings were captured by the research team and therefore were not a routine part of patient care.

The clinician participants, in particular the nursing staff, expressed very strong feelings that the patient should also be recognized as having the right to consent in making an informed judgement in whether or not to participate. Despite this presenting an extra hurdle for me as researcher, in my surgeon role I was used to gaining patient consent for operations and agreed that patients should be given the right for their procedure to be part of the study or otherwise. I discussed the study with patients, providing a bespoke ‘plain language’ Participant Information Sheet and consent form. Inevitably this raised separate ethical difficulties as patients were anxious that by consenting, they were agreeing to be operated on by a learner surgeon (given that the study was investigating clinical teaching and learning). I had to deal with patient vulnerability sensitively, explaining that participation in the study or otherwise would have no bearing upon their clinical treatment, or the person performing the operation, emphasizing that this was a non-interventional study. In this way the autonomy of patients to choose to participate was respected. No patient declined to be part of the study on this basis.

Ethical relationships

The issues arising described by AC highlight the complex nature of ethical relationships in research. The researcher-participant dyad is dependent upon any existing relationship with potential participants and a reassessment of the status of this in the context of the study aims and demands [ 28 ]. Managing power dynamics, role conflict and role boundaries in relationships are explored here firstly by AMR and then by JS, each of whom experienced such issues in their respective doctoral studies.

Power dynamics and role conflict

AMR: Power asymmetry is a feature of research with the balance generally considered to be in favour of the researcher who directs the process while the participant responds [ 28 , 29 ]. Ben-Ari and Enosh [ 30 ] argue that this power is actually co-constructed through the process, as participants exert power in shaping knowledge through choosing what to reveal. An illustration of such power dynamics occurred during my study on partnership working in the development and design of a new healthcare degree, commissioned by the Health Authority [ 31 ]. As program leader, I led the development and delivery of the curriculum and managed the team involved. This brought me the benefit of access to the university team and senior healthcare managers as participants, but also role conflict in managing relationships as the study progressed.

I was acutely aware of my potential biases and power dynamics as both researcher and manager; when interviewing members of my own team I was sensitive to the ‘ethics of care’ [ 1 ]. A specific dilemma arose during an interview with a lecturer when I asked a question from the schedule. Rather than respond to this, the interviewee took the opportunity to air personal grievances. The interview may be viewed as a dialogic process, and my sense of control of the dialogue was challenged by the participant taking ‘counter-control’ [ 11 ] in deviating from the schedule. I was unsure of how to react, feeling it inappropriate as researcher to challenge or make a direct response. In order to avoid distractions and regain control, I steered the conversation back to the interview schedule.

Although in the moment I felt that I was acting ethically in prioritizing the quality of the research [ 32 ], the issue troubled me later. It seemed inappropriate to raise the grievance with the interviewee in my management role after the event as I had assured participants of the confidentiality of the proceedings. With hindsight, given the power asymmetry in the manager-employee relationship, I now believe that seeking a later opportunity to discuss the grievances would have respected the autonomy of the staff member and provided duty of care. On reflection, a different interviewer may have avoided such circumstances occurring, but in this instance I was expected to conduct my own interview as part of the doctoral training.

Managing multiple identities in an acute setting

JS: My doctoral study involved conducting a multi-site, observational, longitudinal research study, focusing on clinical reasoning development in final year medical students as they transitioned to junior doctors 1 . This required managing a number of boundary issues through my overlapping roles of clinician, researcher, teacher and mentor. As I observed participants in both simulated and clinical workplaces, the ethical challenges of these roles developed. I had to ensure that participants could opt in or out of various clinical scenarios as well as at different data collection points. I also had to be mindful of my own potential biases and the need to treat them equitably, neither advantaging nor disadvantaging them as participants in the study. Furthermore, I had to consider the secondary participants who were the patients and ward staff in each workplace. Given the opportunistic and serendipitous nature of the workplace, audio-recorded consent was initially sought in the moment from secondary participants, followed by full written consent.

My ontological position, in particular my predominantly insider role, required a high degree of self-reflexivity [ 2 ]. Despite extensive prior approvals and permissions, I anticipated and faced ethical dilemmas arising from my relationships as both an ‘insider’ (a middle grade clinician), and an ‘outsider’ (clinical settings beyond my own workplace and field of expertise). The potential for role conflict also arose between my clinical and researcher role. It was agreed that should an emergency occur within the workplace, I would intervene if necessary in my clinical role in accordance with the GMC’s Good Medical Practice [ 33 ]. Furthermore, I would identify a senior member of staff in advance for each shift to whom I could report any instances of unsafe medical practice. Participants were made aware of my role and ethical position as this may have influenced their decision to be involved.

Ethical dilemmas arising during the study included critical incidents ranging from observing unsafe medical practice to observing primary participants being expected to deal with situations beyond their capabilities. One example occurred in observing a junior doctor who was covering obstetrics, an area in which they had little expertise. The junior doctor had been ‘emergency-paged’ to review an obstetric patient following a significant bleed, where no obstetrician was available. Walking to the emergency, as I unpicked the participant’s clinical reasoning, it became clear that this individual lacked the experiential knowledge and practical skills required. I felt very concerned by this and decided in the moment, that in the interests of non-maleficence (avoiding harm), I would switch role and take an active part in the patient management. Fortunately, shortly after our arrival at the emergency, an appropriate senior doctor appeared and no intervention on my part was required. Had there been unsafe practice, I would have reported the incident following the protocols in place to protect patient safety. Although in this case the situation was resolved, recognising the vulnerability of the junior doctor, I alerted the clinical supervisor to the incident to provide support and ensure that the clinical team debriefed after the event.

Exiting the study

Ethical dilemmas may continue beyond the study as exemplified by AC, who faced challenging issues in maintaining confidentiality and anonymity in dissemination of her findings which included video and audio data.

Challenges in dissemination of findings

AC: Observational field notes and interview transcripts from my study could be presented at academic meetings in anonymized format. However, data from synchronized video and audio, although names were removed, could not be fully anonymized as voices, gestures and body language rendered individuals identifiable. As a clinical researcher, I was able to select clips and the appropriate mode of presentation for particular audiences. For example, at surgical academic meetings where there was a high chance of identification of participants, which might make them vulnerable, I used subtitled video clips to illustrate research findings. This meant that intonation, pitch and rise and fall of delivery within speech were lost; however, the identity of participants was concealed.

For presentation at medical education meetings there was a lower chance of participant identification. The audience was particularly interested in analysis of exact timing of ‘teaching talk’, the guidance given and subsequent responses of the trainee surgeon including pauses, hesitations and hand movement. To enable this, with support I digitally altered audio data so that the pitch of speakers’ voices was modified to conceal identity. On occasion, specific clips with names removed but not completely anonymized format were presented using speakers’ own voices. Express written permission was received from participants for use of that particular clip, recognizing my ability as practitioner-researcher to gauge the likely sensitivity of the data and the audience. For publication purposes, Jeffersonian [ 34 ] transcription notation was used. This technique records pauses, intonation, pace and stresses in the delivery of speech so that the transcript indicates not only what is said, but also how it is said. These different methods of presenting the data were selected in the spirit of non-maleficence, avoiding potential harm to participants, acknowledging that complete anonymity could not be entirely guaranteed. This was made clear to participants at the outset.

Discussion and conclusion

Qualitative research, by its nature, involves immersion in situations and relationships which are complex and unpredictable. These personal accounts have explored the nuanced nature of ethical tensions and personal dilemmas which have emerged for us, as practitioner-researchers beyond the approval process and arising throughout the research. Although some issues are particular to specific situations, there are common features in the challenge of thinking and acting ethically as a qualitative researcher. These include striving to maintain integrity and altruism, upholding autonomy in gaining consent and access, balancing protection of vulnerable participants with paternalism, managing multiple roles and power relations and avoiding harm in dissemination of findings.

The common thread running through our experiences is the sometimes troubling questions raised which may be difficult to foresee, and even when anticipated, require a response ‘in the moment’ [ 9 ], which has ethical consequences. Although the risks involved in JS’s experience of managing an obstetric situation as a clinician-researcher on the wards seem high, and the consequences are immediate, JB’s classroom conversations regarding integrity and altruism in research may have far reaching consequences. Training those learning the craft of research carries significant responsibility as it is key to how future researchers understand ethical principles and manage their own conduct in applying them.

The principles of beneficence, non-maleficence, justice and equity should guide action, but the balancing of these principles effectively from the initial approval through to completion of the study and beyond requires a truly reflexive approach. Through sharing our reflections and insights we hope to raise awareness, not only of the challenges of conducting qualitative research ethically, but also of its value when conducted in a rigorous, ethically informed, thoughtful and reflexive manner. This has implications for those undertaking qualitative enquiry as well the gatekeepers who manage access and for those who prepare and train the researcher of the future.

Biographies

BDS, MEd, PGCert, EdD PFHEA, is Associate Professor of Medical Education, University of Leeds. Her clinical background is in General Dental Practice. She has a Professional Doctorate in Education, is a Principal Fellow of the Higher Education Academy and is a member of the Association for the Study of Medical Education (ASME) Research Committee.

BA (Hons), PGCE, PhD, is Professor of Clinical Education at Edge Hill University. He leads a medical and dental education research program funded by Health Education England North West.

BMSc (Hons), MBChB, MRCS, PGCert, MFST (Ed), PhD, is a Specialty Registrar in Trauma and Orthopaedic Surgery at The Nuffield Orthopaedic Centre, Oxford. She has a PhD in medical education for which she received ASME’s New Researcher Award.

MBBS, MEd, PhD, FRCS, is a Consultant General and Colorectal Surgeon at Frimley Health. She has a PhD in medical education and is a module lead on a Masters in Surgical Science and Practice at the University of Oxford.

BSc (Hons), PGCert, EdD, PhD, is Professor of Health Professions Education at Glasgow University. She has a Professional Doctorate in Education and is Chair of the Education Research Committee of the Association for the Study of Medical Education (ASME).

Conflict of interest

A.-M. Reid, J.M. Brown, J.M. Smith, A.C. Cope and S. Jamieson declare that they have no competing interests.

1 Smith, JM. The Transition from Final Year Medical Student to Foundation Doctor: The Clinical Reasoning Journey. Dundee; 2015 (unpublished thesis)

Editor’s Note: Commentary by: E. Paradise, 10.1007/s40037-018-0414-0.

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Ethics in Qualitative Research: A Practical Guide

2019, International Forum

Qualitative research continues to grow around the world. More and more scholars and institutions of higher education continue to embrace it. Publications must continue to be on practical ways of conducting qualitative research in general and conducting it especially ethically. This paper is focused primarily on practical ways of enhancing ethical practices in qualitative research. While many qualitative research books and articles discuss ethical considerations, it is good to have a paper that synthesizes effective strategies to enhance ethics in a much more practical way. This paper goes from the definition of ethics to the importance of ethical practices and to the implementation of practical considerations before, during, and after data collection in qualitative research. This paper is not meant to be exhaustive; however, it should be a good guide for qualitative researchers who wish to avail of practical strategies for good ethical practices.

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Article Contents

Author contributions, acknowledgements, conflict of interest statement.

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Young people’s views and experience of diet-related inequalities in England (UK): a qualitative study

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Vanessa Er, Mary Crowder, Eleanor Holding, Nicholas Woodrow, Naomi Griffin, Carolyn Summerbell, Matt Egan, Hannah Fairbrother, Young people’s views and experience of diet-related inequalities in England (UK): a qualitative study, Health Promotion International , Volume 39, Issue 4, August 2024, daae107, https://doi.org/10.1093/heapro/daae107

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Inequalities in diets contribute to overall inequalities in health. Economic inequality and inequalities in access to healthy food are key drivers of poor diet and ill health among young people (YP). Despite mounting evidence of structural barriers to healthy eating, less is known about how YP view and experience these inequalities where they live, and how to address them. To explore YP’s perspectives on the drivers of diet-related health inequalities, we conducted three interlinked focus groups with YP aged 13–21 years from six youth groups across three geographical areas in England. We analysed the data inductively and deductively using reflexive thematic analysis and generated themes by examining how social structure, context and agency interact and impact YP’s diet. YP were aware of how inequalities in employment conditions impact their families’ income and ability to eat a healthy diet. They cited the high availability of hot food takeaways in their local areas as a significant barrier to healthy eating but did not support closing or restricting these outlets. They held strong views on policies to tackle diet inequality and showed a nuanced understanding of the strengths and limitations of universal and targeted approaches. Our study showed that YP have an awareness and understanding of food as important in relation to health, and of diet-related inequalities. However, further efforts are needed to shape and promote policies that resonate with YP and address both their health and wider social concerns.

Our study recognizes that young people have an awareness and understanding of food as important in relation to health, and of diet-related inequalities.

Young people have a nuanced appreciation of bounded agency: that is, the way social, cultural and economic factors shape individual food choices and practices.

Young people are potential sources of support for health equity strategies that include social determinist approaches.

Further efforts are needed to shape and promote policies that resonate with young people and reflect and address both their health and wider social concerns.

Inequalities in diets contribute to overall inequalities in health ( The Parliamentary Office of Science and Technology, 2022 ). Improvements in diets can improve population-wide health and reduce wider health inequalities. Poor diet in childhood and adolescence tracks into adulthood ( Hovdenak et al. , 2019 ; Appannah et al. , 2021 ) and is associated with lower health-related quality of life ( Wu et al. , 2019 ) and higher risk of chronic diseases, such as cardiovascular disease ( Daniels et al. , 2011 ), diabetes ( Lascar et al. , 2018 ) and some cancers ( World Cancer Research Fund and American Institute for Cancer Research, 2018 ). According to the Global Burden of Disease dashboard, poor diet was the cause of 7.9 million deaths worldwide in 2019, accounting for 14% of all deaths ( Global Burden of Disease Collaborative Network, 2020 ).

One of the main drivers for poor dietary quality is economic inequality and the relatively high cost of eating a healthy diet. According to the Food and Agriculture Organization’s (FAO) report on ‘The State of Food Security and Nutrition in the World’, more than 3.1 billion people across the world could not afford a healthy diet in 2021 ( Food and Agriculture Organization et al. , 2023 ). In the UK, The Food Foundation reported an increase in the proportion of food insecure households with children, from 12.2% in 2022 to 24.4% in 2023 ( The Food Foundation, 2023 ). Additionally, healthy nutritious food was two times more expensive than unhealthy products. Young people (YP) from disadvantaged backgrounds are more likely to experience food insecurity ( O’Connell et al. , 2019 ), which has worsened since the COVID-19 pandemic and the cost-of-living crisis. Studies conducted in England have shown that YP from socioeconomically disadvantaged backgrounds are more likely to have poor diets ( Johnson et al. , 2018 ; Public Health England and Food Standards Agency, 2021 ). The 2020–21 UK National Diet and Nutrition Survey revealed higher consumption of sugar-sweetened beverages and energy-dense food, and lower consumption of fruits and vegetables among the most socioeconomically deprived YP ( Public Health England and Food Standards Agency, 2021 ). Furthermore, the latest statistics from the UK National Child Measurement Programme revealed that children aged 10–11 years living in the most deprived areas were more than twice as likely to be categorized as obese, based on body mass index, compared to those living in the least deprived areas (31.3% vs. 13.5%) ( Office for National Statistics, 2022 ).

Another driver of YP’s diet is the neighbourhood food environment. There is consistent evidence showing a high density of fast-food and takeaway outlets in socioeconomically deprived areas and areas with a high concentration of ethnic minority population ( Fleischhacker et al. , 2011 ; Molaodi et al. , 2012 ; Thornton et al. , 2016 ; Public Health England, 2018 ; Sanchez-Vaznaugh et al. , 2019 ). This means greater availability of, and access to unhealthy food, as these outlets tend to sell relatively cheap, energy-dense and nutrient-poor food ( Jaworowska et al. , 2014 ; Huang et al. , 2022 ; Rinaldi et al. , 2022 ). The inequalities also extend to unhealthy food advertising where YP from ethnic minority and socioeconomically disadvantaged backgrounds are disproportionately targeted where they live, as well as online ( Backholer et al. , 2021 ). In the UK, children living in low-income households are more likely to eat takeaway meals at home, and those who consume takeaways more frequently have poorer diets ( Adams et al. , 2015 ; Taher et al. , 2019 ). The density of takeaway outlets across England increases each year ( MRC Epidemiology Unit, University of Cambridge, 2019 ). A study of takeaway outlets in Norfolk, UK revealed that the density of takeaway outlets grew between 1990 and 2008, and the increase in the number of outlets was higher in the most deprived areas compared to the least deprived, with this widening over time (3.5 times higher in 2008 vs. 2.8 times higher in 1990) ( Maguire et al. , 2015 ). There is emerging evidence of socioeconomic patterning in online access to takeaway outlets too. A recent study by Keeble et al. (2021) found that the percentage of registered food outlets on an online food delivery service in the most deprived areas was approximately two times greater than in the least deprived areas in the UK.

Despite mounting evidence of the structural barriers to eating a healthy diet, such as economic inequalities and the food environment, less is known about how YP view and experience these inequalities where they live, or how to address them. There have been two previous systematic reviews and a scoping review of YP’s views on healthy eating, all focusing on body size (e.g. obesity, body shape and weight) rather than health or health inequalities per se . One review included 11- to 16-year-olds ( Shepherd et al. , 2006 ); another 12- to 18-year-olds ( Rees et al. , 2014 ) and the third 18- to 24-year-olds ( Munt et al. , 2017 ). None of these reviews presented detailed analysis focused on health inequalities, as the reviewers noted that included studies typically reported few details on equity dimensions. The reviews by Shepherd et al. (2006) and Rees et al. (2014) found that YP tended not to frame food as a health issue. Rather they tended to view food in terms of what they liked and disliked.

The case has been made that low agency population interventions, such as free school meals (FSMs), advertising restrictions of foods high in fat, salt and sugar (HFSS) and restrictions of takeaway outlets, are effective and equitable ways to reduce poor diet in the population ( Adams et al. , 2016 ). However, research literature is sparse on YP’s views of such interventions, or their views on alternative (high agency) education interventions or the relative merits of targeted and population-level approaches. In England, the FSM ( Department for Education, 2018 ) and holiday activities and food programmes ( Department for Education, 2022 ) provide healthy food to school-aged children from low-income backgrounds, but there is no provision for older YP (e.g. aged 18–24) from similar backgrounds. Currently, there is a restriction on broadcast advertising for HFSS foods, but only for those aimed at children ( UK Advertising Standards Authority, 2024 ). The existing planning policy only restricts the opening of new takeaway outlets ( Keeble et al. , 2019 ), which has been perceived as less useful in areas that already have a high density of takeaway outlets.

To address the gap in the literature, our study was guided by the following questions:

What is YP’s understanding and experience of diet-related health inequalities?

What are the drivers of diet-related health inequalities where YP live?

What are YP’s views on addressing diet-related health inequalities where they live?

The research in this article drew on data from a wider study exploring YP’s perceptions of what influences their opportunities to be healthy within their local area and their understanding of health inequalities ( Fairbrother et al. , 2022 ). The philosophical underpinning of our approach is critical realism. We view health inequalities as real (they exist independently of human practices and awareness) while acknowledging the role of human practices, perspectives and social context in shaping how we know about health inequalities. In other words, our knowledge of health inequalities is subjective and incomplete. Our approach was critical in orientation ( Braun and Clarke, 2024 ) in that, we sought to unpack and interrogate participants’ accounts to provide causal explanations of health inequalities and make recommendations that are relevant and beneficial to YP. We conducted a qualitative study to understand YP’s perceptions and experiences of health inequalities, with a focus on explaining the causal mechanisms of health inequalities.

Positionality

As a team of public health researchers, our work is rooted in explaining and addressing health inequalities. Based on our knowledge of the literature, we assumed that YP have a more individualistic explanation of the causes of, and solutions to health inequalities. We believe that YP have a right to good health and they should be supported to live to their fullest potential. We made a conscious effort to include disadvantaged and marginalized voices. However, we recognized the power imbalance as we are older, well-educated and ‘relatively advantaged’ (though this term masks some variation in the research team, such as variation in social backgrounds, job security, housing security and other intersecting equity dimensions). Therefore, we took a participatory approach to research in our attempt to balance power dynamics and meaningfully include YP of disadvantaged backgrounds in discussions on health inequalities. Engaging in a process of reflexivity, we acknowledge that our analysis is informed by our prior understandings of health equity, including pre-held assumptions that social determinants, as described by Marmot et al. (2020) , are particularly important for both explaining and tackling health inequalities. We acknowledge that our research findings extend from our subjective experience of the research, influenced by our social and professional backgrounds, and our particular interactions with the YP who participated.

Sampling and recruitment

We recruited YP aged 13–21 years through six youth groups across three geographical areas in England; London, South Yorkshire and North East. Our original sampling frame targeted YP living in areas with contrasting levels of deprivation and geography (e.g. rural and urban). This was hampered by the COVID-19 pandemic, so we recruited YP from youth groups with whom we had established relationships, all of which were located in areas in the most deprived quintile based on the 2019 English indices of multiple deprivation. Furthermore, while we initially aimed to work with YP aged 13–17 years, we took an inclusive approach as some of our youth groups also included YP over 18.

Data collection

We conducted a series of three interlinked focus groups with YP from each of the six youth groups between February 2021 and June 2021, resulting in a total of 18 focus group sessions. The focus groups were planned to be in-person, but we switched to an online format for all but three sessions with one youth group in the North East due to the UK’s lockdown and social distancing restrictions during the COVID-19 pandemic.

Session 1 used a participatory concept mapping activity ( Jessiman et al. , 2021 ) to explore perceptions of what influences YP’s opportunities to be healthy in their local area. Session 2 examined YP’s understanding of health inequalities through prompted discussion of selected health-related news headlines, including FSMs, fast food and advertising of less healthy food. Session 3 focused on YP’s priorities for change to improve health in their area.

Facilitators used a topic guide (see Supplementary Material ) that had been piloted with youth organizations to aid discussions. At least two researchers facilitated each focus group, accompanied by a youth worker for safeguarding purposes and to support YP if required ( Woodrow et al. , 2022 ). Focus groups lasted between 90 and 100 minutes and were audio-recorded with consent. Participants also provided information on ethnicity, age and residential postcode (used to determine area deprivation level). We gave participants £20 vouchers at the end of each focus group as a token of appreciation for their time.

The study has ethics approval from the School of Health and Related Research (SCHARR) Ethics Committee at the University of Sheffield (ref: 037145). All participants provided written consent. For participants under the age of 16 years, opt-in consent was also obtained from parents/guardians.

Data analysis

Prior to analysis, audio recordings were transcribed verbatim and anonymized by approved transcription services. The research in this article drew on data from a wider study exploring YP’s perceptions of what influences their opportunities to be healthy within their local area and their understanding of health inequalities ( Fairbrother et al. , 2022 ). Here, we only include discussions about food as data. We analysed the data using reflective thematic analysis ( Braun and Clarke, 2022 ) as it is theoretically flexible and fits with a critical realist approach. Using this approach, we examined the mechanisms and structures that give rise to diet-related inequalities by focusing on participants’ accounts and situating them within the contexts (realities) that participants live in. This requires continual reflexivity and critical engagement with the data and the analytical process.

V.E. and M.C. read the transcripts and applied a mix of semantic (surface meaning) and latent coding (underlying meaning), aided by a qualitative analysis software, NVivo 12. During the coding process, V.E. and M.C. met regularly to discuss the meaning of the data to ensure reflexivity and expand the interpretation of the data. We analysed the data deductively by using two frameworks as a lens to make sense of the data: Smith and Anderson’s (2018) framework for lay perspectives of socioeconomic health inequalities, and Pearce et al.’s (2019) conceptual model of pathways to inequalities in child health. We combined it with inductive analysis as we were open to the possibility that the data may not fit these frameworks.

Upon reflection, we decided that Giddens’s (1989) structuration theory which posits social practices as an interplay between agency and social structure, was a better fit for the data and used it to inform the conceptualization of themes. We focused on how diet-related inequalities were produced, by contextualizing YP’s eating practices and interactions with their local food environment, and connecting it with the social history and structure of the area where they live. The themes were further developed by V.E. and M.C. alongside discussions with C.S. and H.F. to ensure the themes capture the central meanings and patterns identified from the data and answer the research questions. V.E. wrote a narrative for each theme, with the scope of each theme being iteratively defined and refined with inputs from M.C., C.S., M.E. and H.F.

Our final sample consisted of 42 YP aged 13–21 living in urban and rural areas, and of different genders and ethnicity (see Table 1 ).

Participant characteristics

The YP in this study perceived eating a healthy diet as unattainable due to intersecting inequalities that manifested in their daily food practices and environment. YP’s agency to eat healthily was constrained by structural inequalities, mainly economic inequality and low availability and access to healthy food in deprived areas. We identified three key themes: (i) impact of economic inequality on family food practices, (ii) availability and access to hot food takeaways in areas of high deprivation and (iii) making healthy food more accessible to families.

(i) Perceived impacts of economic inequality on family food practices

This theme captures YP’s understanding of economic inequality. They viewed economic inequality through a ‘place’ lens, whereby some regions or neighbouring local areas in the UK were viewed as more economically disadvantaged than others. A recurring view suggested a mechanism whereby places with economic problems had poorer employment opportunities for YP and their parents. This in turn led to two types of barriers to healthy eating. Firstly, low incomes—YP believed that healthy foods tend to be more expensive than unhealthy food and that low-income families may have to choose between healthy diets and other essentials such as heating and school uniforms. Secondly, YP perceived that for many low-income families, there is less opportunity to prepare healthy meals at home due to a lack of time as a result of working long hours and/or multiple jobs.

Though YP acknowledged the importance of nutrition knowledge and cooking skills for healthy eating, they were acutely aware of how family income (or lack of it) restricted their ability to have an adequate and healthy diet.

I see it sort of like if you have a run down job, you don’t have as much pay to pay for the food. Meanwhile, if you have a high job and you have the high society, you have more pay, therefore you’re able to take on more food. Which brings in the inequality with food discussed tonight. (North East Group 2, Session 2)

There was a common perception among YP that unhealthy food is cheap while healthy food (described mainly as fresh fruits and vegetables) is expensive and thus unattainable on a low income.

things like salads they’re expensive man, like five, six quid then the opposite of that, like portion of chips is like a quid…Even the prices of fruit and veg, I don’t know why they price up a bit too much. (London Group 1, Session 1) I’d say so because like there’s a lot of income inequality where we are especially, so a lot of like poorer households find it hard to buy the more healthy stuff. They tend to be more expensive, especially in supermarkets… (South Yorkshire Group 2, Session 1)

YP also knew of low-income families having to prioritize household bills and expenses over food. A few spoke from experience about their parents having to spend less on food to pay for essentials such as school uniforms. The need to make trade-offs came to the fore while discussing the impact of the COVID-19 pandemic. YP noted that some in their community could hardly afford to pay utility bills and were thus unable to store and/or cook fresh food, resorting to the convenience of fast-food or hot food takeaways.

I think, with fast food, it doesn’t need to be maintained in a sense, so like, let’s say you can’t afford electricity bills, you can’t afford to keep your fridge running, or something. Buying healthy stuff isn’t, it’s not going to last, so just buying fast food, might be cheese and everything, is like OK, I’ve bought it, I can eat it, through it in a day, like it’s finished. (London Group 1, Session 2) …that goes back to the budgeting thing. Some people, especially people who don’t necessarily have a lot of money might want to spend less on food and more on making sure that their child has the right stuff for school. (South Yorkshire Group 1, Session 1)

While YP made direct reference to low income as a barrier to healthy eating, they also demonstrated an in-depth understanding of inequalities in employment conditions faced by those working in low-paid jobs, and how that negatively impacts one’s ability to eat a healthy diet. They pointed out that those in low-paid jobs often lack time to prepare and cook meals as they tend to work long hours or multiple jobs. The North-South (England) divide in economic opportunities was regularly brought up by YPs from the North East. According to one YP, movement restrictions during the COVID-19 pandemic further highlighted the inequalities experienced by those in low-paid jobs (e.g. bus drivers and delivery drivers) as they were less able to work from home.

We did talk a bit about how people in the North, the sort of jobs that we have, it’s less likely that you’ll be able to work from home. So if you are working from home – which predominantly, especially if you’re in the South because a lot of the economies, they’re very knowledge-based – you can afford to do that sort of thing from home…So they have certainly got more time and more time that they can dedicate to something like cooking. (North East Group 1, Session 2)

(ii) Availability and access to hot food takeaways in areas of high deprivation

This theme describes how YP felt physically surrounded by hot food takeaways in their local neighbourhood, and digitally surrounded via food delivery apps. They showed an understanding of how different elements of underserved communities intersect to encourage negative health practices.

YP cited the high density of hot food takeaways in their local area and a lack of food retail shops selling affordable and healthy options as barriers to healthy eating. As a YP related:

I wanted to talk about like fast food joints, like in [Name of location] like there’s a lot of like fried chicken shops, a lot of like and they’ve renamed themselves to grills…like to get like more consumer support. And basically like, what I was saying was like it makes it harder for me. (London Group 2, Session 1).

In terms of family food practices, the constant exposure to hot food takeaway was perceived as offering easy access to food for those whose home situations made it challenging to prepare home-cooked meals. For example, YP described how parents in low-income families worked long hours, leading YP and their families to take the ‘easier option’ of purchasing and consuming readily available hot food takeaways. Even though they were aware that hot food takeaways are unhealthy, they felt that they had to choose convenience over the nutritional quality of their meals.

Because it could be quite a busy job that involves travel where they’d be an air hostess or a conductor for a train. It just might take a lot of time away from their family, so that has to force them to do – in a way – irrational things. Such as constantly sending a fast food order instead of healthy objects. (North East Group 2, Session 2) Like if you come from a lower, like a poor area, maybe – like I knew someone who his mum would give him a quid and he’d go to the shop and just buy something and have it for his tea and he’d be out all night until like 10. His upbringings, obviously it’s not going to be the same as someone who has home-cooked meals every night that are prepared with nutritional value in mind. (South Yorkshire Group 2, Session 3)

YP also talked about how the high availability of cheap and ‘tasty’ hot food takeaways, particularly around the school vicinity, made it convenient for YP to purchase and consume them. It was clear during the discussions that hot food takeaway outlets had become part of the social fabric of local life even though YP were critical of the ubiquitousness of these outlets where they live. They were considered by some YP as the ‘place to go’ after school as there was not much to do for YP in their local area, which also highlighted the lack of services and facilities that cater to youths in areas of high deprivation. Inadvertently, YPs socialized at hot food takeaway outlets and ended up consuming food deemed to be less healthy despite their intentions.

When probed about the high density of hot food takeaways, a YP highlighted the complex interdependency of individual and structural factors that affect one’s ability to eat healthily. Specifically, they explained that demand for cheap and quick meals resulted in the opening of hot food takeaway outlets, which in turn created high visibility and high consumption. This then reinforced the need for more outlets. In contrast, the cycle could be broken or disrupted by the lower demand for ‘cheap’ hot food takeaways in more affluent neighbourhoods.

And then I guess because I think, like, yeah, if you’re in an area where demand is higher you’re going to have more takeaway so then if you’ve got more takeaway then that’s, kind of, what you see most of the time then you’re going to end up going to those takeaways more maybe. And seeing that, like, seeing it as more of an option compared to in a wealthier area where if at first you’re not, like, if there isn’t too much demand for fast food in wealthier areas then the takeaways aren’t really going to go there and then, because, like, and it is then, it is also easier to just go to the supermarket and, like, get stuff. (London Group 2, Session 3)

YP’s narratives also suggested that hot food takeaways have a prominent online presence in their everyday lives. They related their experience of being inundated with advertising of HFSS sold by hot food takeaways in their local area when using food delivery applications, and though healthier options were available, they were more expensive and deemed unaffordable.

…there’s about, I think it’s about 20 on my app just around me, because I live near a load of take aways. (South Yorkshire Group 1, Session 2) …and like delivery companies, some of them actually offer the, the opportunity to like buy healthier options. Some of them do salads and all sort of meals that are meant to be healthier. But it’s like those options are very expensive, compared to the junk food, so called junk food options. So it still leaves you with no choice than to go for the junk food rather than the healthier option. (London Group 1, Session 2)

(iii) Making healthy food more accessible to families

This theme presents YP’s views on public policies or interventions to address inequalities in accessing healthy food. YP had strong views on policies to tackle food inequality and showed a nuanced understanding of the strengths and limitations of universal and targeted approaches. Discussions about interventions, especially those targeted at low-income families were strongly tied to the stigma of poverty. YP in general were not in favour of a targeted FSM approach as they perceived it to be stigmatizing. As recounted by a participant: ‘ There’s an element of shame to it as to whether or not you will accept for yourself that you need that help, feeding your kids and feeding your family’ (North East Group 1, Session 2) .

Although YP from low-income families who were eligible for FSM appreciated the assistance from the government, their accounts of receiving FSM referred to shame and centred on who was ‘poor enough’ to receive government assistance. One YP felt guilty for receiving FSM because their parents held ‘decent’ jobs (i.e. perceived to be well-paid) with full-time employment, and did not consider themselves to be impoverished.

My mum’s a teacher and my dad works at the NHS, but a couple of years ago we were eligible for free school meals because it was something like me mum wasn’t earning enough so we therefore qualified. We felt kind of guilty, like we were robbing it from someone… because there are literally people on it who are choosing between feeding the kids at lunch or clothes for school uniform. (South Yorkshire Group 1, Session 2)

One focus group referred to food voucher schemes, of the kind administered by some schools during the COVID-19 epidemic. Vouchers were seen as a way of giving families a way to decide how best to meet dietary needs and food preferences. This came up while discussing FSM provision during the COVID-19 pandemic, whereby most schools provided food parcels to students. There were strong criticisms of the quality of food parcels as the items were not nutritious and were overpriced. In contrast, another YP who received food vouchers shared how that gave her family the freedom to purchase food according to their needs, and thus they were able to maximize the value of the vouchers:

So for instance, I get them (food vouchers) and we go shopping every month so we just save up all the vouchers and spend it on different places…We get tinned vegetables, like peas and carrots and that, but we don’t really like fresh veg or owt like that because it runs out of date really quickly. There’s no point really getting it. (South Yorkshire Group 1, Session 2)

Most YP demonstrated empathy for those who were perceived to be worst off, for example, those who had to use food banks. Alongside feelings of shame and guilt for receiving FSM, YP shared concerns about the proliferation of food banks in their area and the stigma associated with going to one, particularly the fear of parents being blamed for their inability to provide food for their children. YP’s empathy also extended to local business owners. Although they recognized the adverse impact of hot food takeaways, YP did not want these outlets to be closed or restricted by local authorities—a planning policy that can be introduced by local authorities to limit the number of hot food takeaways, especially within the school vicinity. They expressed concern about the potential loss of income for the businesses and more importantly, loss of employment for workers at the outlets. In terms of supporting customer choice, YP often framed this as wishing to see healthier food options at local outlets as this is where they felt the choice was limited. Incentivizing customers to purchase healthier meals through a loyalty scheme was one of the examples given by YP.

And, I don’t know, I was thinking incentives so, like, in a fast food chain, because you can’t shut them and you don’t really want to disturb their business, but if there was something, like, if you buy a certain number of the healthier meals and you get one of the less healthy meals for free or something, kind of, like a loyalty card…because I don’t think awareness alone necessarily helps because I think people are generally aware but it’s a case of actually, like, putting that into action and I think that can be quite tricky. (London Group 2, Session 3)

This article examines YP’s views on and experiences of inequalities in relation to their access to healthy food and diets. While previous studies have explored YP’s views of healthy eating ( Shepherd et al. , 2006 ; Rees et al. , 2014 ; Munt et al. , 2017 ), there is little evidence on YP’s views of how inequalities in healthy eating occur and how to address them.

The YP we spoke to viewed inequalities in food and health partly in terms of how different people were more or less likely to consume healthy food (with fast food often used by participants as an archetypal ‘unhealthy’ food type). YP discussed inequalities in more explicit food poverty terms: showing awareness that some individuals and families struggle to afford sufficient food. Low income, coupled with the high cost of healthier food products, was singled out as a significant barrier to eating a healthy diet by YP. This is supported by analyses of food costs in the USA, UK and Europe ( Kern et al. , 2017 ; Penne and Goedemé, 2021 ; The Food Foundation, 2023 ), which demonstrated that the cost of healthier food products was higher than less healthy products (two times more in the UK). Furthermore, one in five households in the UK would have to spend almost half of their disposable income to achieve a healthy diet, leaving little for other expenditures ( The Food Foundation, 2023 ). YP also linked low income to inequality in employment opportunities, specifically low access to, and availability of higher paying jobs where they live, and its impact on their diet. This was raised by participants in all three study sites, but more prominently in the North East of England, which has one of the highest rates of unemployment and proportion of benefit claimants ( Office for National Statistics, 2023b ), and the lowest average weekly salary in England ( Office for National Statistics, 2023a ).

We found that YP in our study had a less individualistic understanding of inequality than was suggested in the literature ( Backett-Milburn et al. , 2003 ; Vromen et al. , 2015 ; L’Hôte et al. , 2018 ; Smith and Anderson, 2018 ). While acknowledging the importance of dietary knowledge and cooking skills, our study participants showed an understanding of how structural inequalities impact their ability to acquire and consume a healthy diet. For example, YP were able to articulate the reinforcing connection between availability (supply) and purchase (demand) of hot food takeaways in their local area, which in turn made it easier for them to consume energy-dense and nutrient-poor food. The literature supports YP’s view that disparities in both physical and online food availability reinforce area inequalities. The high density of affordable but less healthy hot food takeaway outlets in deprived areas, both physically and online, has been well-documented ( Fleischhacker et al. , 2011 ; Maguire et al. , 2015 ; Keeble et al. , 2021 ). There is also evidence that it is often the same communities who experience both low income and high exposure to fast-food takeaway in the UK. Burgoine et al. (2018) , for example, demonstrating the double burden of low income and exposure to fast-food takeaway and its impact, found that the lowest income combined with the highest fast-food outlet proportion was associated with greater odds of obesity (odds ratio = 2.43, 95% confidence intervals: 2.09, 2.84). Another study in the UK found that within 4 years of Gateshead Council’s ban on planning permission for fast-food outlets, there was a 13.88% reduction in the proportion of fast-food outlets compared to five other local authorities in the North East of England which did not implement the ban ( Brown et al. , 2022 ). The ban was associated with a decrease in the prevalence of overweight and obesity among children in year 6, living in areas that have a high density of fast-food outlets ( Xiang et al. , 2022 ). This further demonstrates that obesity (as measured by body mass index) is a manifestation of social inequalities in health.

Previous reviews have found that health tends to be deprioritized in YP’s accounts of food, body shape and weight. The previous evidence suggests that YP focus instead on what they like and dislike, particularly on social factors such as social norms and peer expectations relating to body shape, and the social isolation that may result from not living up to those norms ( Shepherd et al. , 2006 ; Rees et al. , 2014 ; Munt et al. , 2017 ). The previous reviews have little to say on health inequalities, perhaps reflecting YP’s apparent lack of interest in health per se . However, some reviewers pointed out that many authors of included studies neglected to provide data on health equity dimensions. In contrast, many of the YP we spoke to were willing to discuss food in relation to health and health inequalities. Possibly, this is because we (the researchers) made our interest in health inequalities known to participants, in contrast to some previously published studies where the researcher's interest in health inequalities may not have been apparent. However, we think it reasonable to hypothesize that health and inequalities may have been more present in YP’s minds at the time of our data collection, given that it occurred during the COVID-19 pandemic. The study also took place in an era where food poverty and food charity (such as food banks) have become more prominent in UK discourse ( The Food Foundation, 2023 ).

Whilst we present YP’s interest in health inequality as a finding from our study, we are careful not to exaggerate the point. The YP we spoke to were also capable of discussing food availability and access in more social terms. For example, participants viewed fast-food chains as places where YP can socialize with friends. This is consistent with findings from a qualitative study of local (adults) perceptions and experiences of chicken shops in a deprived area in East London, which found the shops described as a part of everyday life and valued community spaces ( Thompson et al. , 2018 ). Some participants of our study even felt protective towards local businesses, not wishing to see them shut down. YP’s attitudes towards measures intended to address food poverty were also shaped by more than food considerations. The thought of using welfare or charity was associated by some YP with stigma—and also guilt that seeking help to obtain food could prevent assistance from going to someone with a greater need. These attitudes present insights into what YP regard as social responsibility: supporting local businesses (even unhealthy ones), and assuming that charity and welfare are finite resources best targeted at those in greatest need.

YP’s attitude to universalism was complex. Some appeared to support universal approaches, for example, universal FSMs as a means of reducing stigma. Some wanted further intervention from the government to extend the FSM funding to include after-school and holiday meals. This is in line with the findings of two studies with YP in the UK ( Fairbrother et al. , 2012 ; Knight et al. , 2018 ) which emphasized government and corporate responsibility for ensuring adequate nutrition and a healthy diet is affordable for families. However, other studies on the public’s attitudes towards inequalities have revealed a reticence towards government intervention and a preference for educational (information) and individual behavioural change interventions instead ( Backett-Milburn et al. , 2003 ; Vromen et al. , 2015 ; Smith and Anderson, 2018 ). A comparison study of YP’s view on inequality in the USA, UK and Australia, also found most participants focused on individualized (agency) explanations of, and solutions for inequalities, with little critical engagement of the structural causes of inequalities ( Vromen et al. , 2015 ).

Implications

Our findings show YP have a nuanced appreciation of bounded agency: that is, the way social, cultural and economic factors shape individual choice and practices. However, public health policymakers might view some of the YP’s views with mixed feelings. On the one hand, there is evidence of YP’s understanding of health inequalities, and social determinants, and a clear desire for improvement. On the other hand, this section of the public holds views on social responsibility that do not all fit neatly within the kind of universalist and regulatory approaches to health equity that many UK public health practitioners have long espoused ( Bambra et al. , 2011 ; L’Hôte et al. , 2018 ; Marmot et al. , 2020 ). We found evidence of common ground between YP and public health viewpoints, but further bridging work between the public health community and the public is still required.

We believe that our study can contribute to a re-imagining and updating of the evidence base about YP’s views about food and inequalities. In contrast with previous evidence, this re-imagining recognizes that YP have an awareness and understanding of food as important in relation to health, and of diet-related inequalities—including considerations of both individual behaviour and social determinants. While different findings between studies may reflect methodological differences, there are also plausible reasons for hypothesizing that times have changed, and that YP’s views have changed with them. This hypothesis should be explored further in future research.

Strengths and limitations

We recruited YP living in areas of high deprivation. Using a place lens coupled with participatory concept mapping was an accessible way of eliciting YP’s views on diet-related health inequalities. It made tangible the structural inequalities that manifest in everyday life and impact YP’s ability to eat a healthy diet. It also allowed us to explore YP’s diet in multiple aspects of their life and a range of settings, including school, home and community.

Though our study showed that YP’s agency of purchasing and consuming a healthy diet was constrained by individual and area-level economic inequalities, we were unable to explore how that differs by levels of autonomy and agency. A Lancet series on dietary intake among adolescents (aged 10–24 years) emphasized the need to view adolescents as unique; each with different development trajectories within diverse sociocultural contexts ( Neufeld et al. , 2022 ), rather than being defined by age only. Most of our participants still lived at home and thus conversations about food centred around school meals and hot food takeaways. However, a few participants who had more independence and agency felt that they were being forgotten and not supported by existing policies to obtain and consume a healthy diet. In two of the three study sites, all participants were white British. Although these areas have a high proportion of White population, we may have obtained more diverse views if we had included YP of different ethnicity. There were mentions of value for money as a key factor influencing food purchases in our study. A deeper exploration would enhance our understanding of what value for money means to YP, and its implications.

Individual and area-level economic inequalities constrain YP’s ability to eat a healthy diet. The YP we spoke to appeared to be aware of this. We hypothesize that this awareness may reflect changing contextual factors such as the experience of the COVID-19 pandemic and widely discussed concerns about food poverty. YP are potential sources of support for health equity strategies that include social determinist approaches. However, it would be a mistake to assume this support can be relied on without further efforts to shape and promote policies that resonate with YP and address both their health and wider social concerns.

H.F., C.S. and M.E. conceived the study. V.E., M.C., E.H., N.W. and N.G. collected and analysed the data. V.E. wrote the first draft. All interpreted the data, edited and reviewed drafts and approved the final version of the manuscript.

We would like to thank the young people and the youth organizations who took part in the study. Thanks also to Phillippa Kyle and Nicky Knights for their contribution to data collection and analysis.

This study was funded by the National Institute for Health and Care Research (NIHR) School for Public Health Research (SPHR) (Grant Reference Number PD-SPH-2015). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

We do not have any conflict of interest. The funders had no role in the design of the study; in the collection, analyses or interpretation of data; in the writing of the manuscript or in the decision to publish the results.

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• Volume 14, Issue 8
• Qualitative exploration of patients’ experiences with Intrabeam TARGeted Intraoperative radioTherapy (TARGIT-IORT) and External-Beam RadioTherapy Treatment (EBRT) for breast cancer
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• http://orcid.org/0000-0002-7573-6712 Sandeep Kumar Bagga 1 ,
• Natalie Swiderska 2 ,
• Charlotte Hooker 1 ,
• Jennifer Royle 3 ,
• Marie Ennis-O'Connor 4 ,
• Siobhan Freeney 5 ,
• Dympna Watson 4 ,
• Robin Woolcock 6 ,
• George Lodge 7 ,
• Siobhan Laws 7 ,
• http://orcid.org/0000-0003-1760-1278 Jayant S Vaidya 8
• 1 Research , MediPaCe , London , UK
• 2 Patient Engagement , MediPaCe , London , UK
• 3 Strategy , MediPaCe , London , UK
• 4 Independent Patient Advocate , Dublin , Ireland
• 5 Lobular (Breast Cancer) Ireland , Dublin , Ireland
• 6 Triple Negative Breast Cancer Foundation Inc , London , UK
• 7 Royal Hampshire County Hospital , Winchester , UK
• 8 Division of Surgery and Interventional Science , University College London , London , UK
• Correspondence to Dr Sandeep Kumar Bagga; sandeep{at}medipace.com

Objective To gather a deep qualitative understanding of the perceived benefits and impacts of External-Beam RadioTherapy (EBRT) and TARGeted Intraoperative radioTherapy (TARGIT-IORT) using Intrabeam to assess how the treatments affected patient/care partner experiences during their cancer treatment and beyond.

Design and participants A patient-led working group was established to guide study design and to help validate findings. Patients with experience of receiving EBRT or TARGIT-IORT were purposively sampled by Hampshire Hospitals NHS Foundation Trust. These patients had been offered both regimens as per their clinical features and eligibility. Semistructured interviews were conducted with 29 patients and care partners with lived experience of either EBRT (n=12, 5-day FAST-Forward regimen and n=3, 3-week regimen) or TARGIT-IORT (n=14). Thematic analysis was then carried out by two coders generating 11 themes related to EBRT or TARGIT-IORT.

Setting Semistructured interviews were conducted virtually via Zoom during February and March 2023.

Results A number of procedural grievances were noted among EBRT patients. EBRT was perceived as being disruptive to normal routines (work, home and travel) and caused discomfort from side effects. TARGIT-IORT was perceived by patients and care partners as the safer option and efficient with minimal if any disruptions to quality of life. The need for timely accessible information to reduce anxieties was noted in both cohorts.

Conclusions This qualitative study found that patients perceived EBRT as being greatly disruptive to their lives. In contrast, the one-off feature of TARGIT-IORT given while they are asleep during surgery gives them the feeling of stamping out the cancer without conscious awareness. These insights can help healthcare staff and policy-makers further justify the incorporation of the treatment favoured by these patient perceptions (TARGIT-IORT) more widely in routine practice. Further research is planned to explore TARGIT-IORT in more diverse populations and in the 35 countries where it is an established treatment option.

• breast cancer
• radiotherapy
• qualitative research
• breast surgery
• quality of life

Data availability statement

Data are available upon reasonable request. Raw data such as interview transcripts are not publicly available due to participant confidentiality and risk of compromising privacy but can be made available to researchers if appropriate confidentiality, ethics, regulatory and consent processes can be put in place.

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

https://doi.org/10.1136/bmjopen-2023-081222

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STRENGTHS AND LIMITATIONS OF THIS STUDY

This qualitative study included the two routinely offered radiotherapy treatment options (External-Beam RadioTherapy and TARgeted Intraoperative radioTherapy using Intrabeam) allowing for assessment of patients’ perceptions and experiences in each.

Methodological strengths include measures to prevent researcher bias, such as producing reflexive accounts, independent coding, and exploring both patient and care partner perspectives .

Extensive involvement of a patient-led working group ensures the study design and delivery is robust yet sensitive and respectful.

A limitation is the lack of diversity in the study population, being predominantly white and of higher socioeconomic status from a single English location because of which we are planning to explore these concepts in more diverse populations and in the 35 other countries where TARGIT-IORT is already a well-established treatment option.

The COVID-19 pandemic during which the patients were treated may have introduced some confounding factors, but they did provide useful insights into patient isolation issues.

Introduction

Conventionally, radiotherapy treatment for breast cancer has involved patients undergoing External-Beam Radiotherapy (EBRT) several weeks or months after their surgical removal (lumpectomy). EBRT is usually delivered postoperatively to the whole breast. For external beam radiotherapy, patients are required to attend 15 treatment sessions, each lasting about 15 min, 5 days a week over 3–6 weeks. 1 , 2 In 2020, the FAST-Forward protocol, administering radiotherapy over five sessions, was adopted in some parts of UK, partly as a response to the COVID-19 pandemic and even before the results of the FAST-Forward trial were published. 3 An additional 5–8 days of tumour bed boost is given in about a quarter of cases who are found to have higher-risk disease. 3

Targeted Intraoperative Radiotherapy (TARGIT-IORT) using Intrabeam offers an alternative to women with early breast cancer that is currently being used in a small number of hospitals across England. This approach, first used in 1998, delivers a single dose of radiotherapy directly to the breast tissue surrounding the tumour immediately after the tumour has been removed and the patient is still under the same anaesthetic in the operating theatre. The long-term results of the international randomised TARGIT-A trial (n=2298) in which TARGIT-IORT was compared with EBRT found TARGIT-IORT to be effective as whole breast radiotherapy, reduced non-breast cancer deaths and improved overall survival in those with grade 1 and grade 2 cancers. 4–12

To date, several studies have investigated patients’ experiences with TARGIT-IORT quantitatively. 13–18 These studies gathered information about patients’ quality of life (QoL) during and after treatment via questionnaires and have concluded that patients receiving TARGIT-IORT report high QoL scores 13 and better emotional well-being, less pain, fewer breast and arm symptoms compared with patients receiving EBRT. 14 19 The social impact of reducing the repeated journeys to the radiotherapy centre for both the patient and their care partner has been established. 20 Patient preferences have also been explored in studies based in the USA and Australia. 21–24 However, qualitative insights can give researchers and practitioners an in-depth understanding of patient perceptions that can help explain, with confidence, the reasoning behind the difference in QoL experienced by patients having these treatments.

Much of the literature on patients’ experiences of receiving radiotherapy has focused on EBRT alone where qualitative studies have used various methods such as workshops, interviews and diary entry analysis. Recurring themes include the need for adequate information provision, healthcare professionals’ knowledge of breast or arm lymphoedema (sluggish drainage of lymph fluid), perceived lack of choice, experiences of being naked and feelings of disempowerment, 25 psychological burdens of impact (and the resources required to support patients), 26 impact of side effects such as skin toxicity on patients’ QoL, life and health after radiotherapy and feeling mystified by radiotherapy and how it works. 27 28 While there are other studies investigating breast cancer patients’ lived experiences of receiving the diagnosis, treatment perceptions, experiences of survivorship and symptoms from radiotherapy, 29–34 they do not focus on lived experiences of receiving EBRT specifically.

In addition, the literature review has highlighted that no qualitative comparison of patients’ experiences of TARGIT-IORT and EBRT has been conducted although one qualitative study, exploring overdiagnosis of breast cancer, did briefly describe the experiences of patients having TARGIT-IORT and EBRT. 35 Rich descriptions of authentic experience can help to place the treatment pathway in the context of patients’ everyday world and to truly understand the perceived barriers, benefits and personal consequences of treatment. Therefore, this study is designed to gather a deep understanding of how patients define the benefits and impacts of each therapeutic regimen and how this qualitatively affects patients’ and/or care partners’ experiences. As a secondary aim, the study will also identify where there have been unnecessary treatment-related impacts on QoL and areas of potential improvement.

Methodology

Study design.

This study used a qualitative research design with semistructured interviews as the primary research instrument. Researchers adopted a phenomenological approach which encourages a bracketing off of researchers’ own preconceptions and opinions to help mitigate bias and promotes a special importance to individual human experience where multiple realities exist (based on participants’ own subjective experiences).

At the inception of the study, a patient-led working group was established to ensure the research was designed and conducted in a respectful and sensitive manner. Figure 1 outlines the research process. The authors have used the Consolidated criteria for Reporting Qualitative research to report the study 36 (see online supplemental file 1 ).

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Overview of research process. EBRT, External-Beam RadioTherapy; TARGIT-IORT, TARGeted intraoperative radiotherapy; REC, Research Ethics Committee.

Working group

Four patient advocates (three patients who had been treated for breast cancer and one care partner) with lived experiences of radiotherapy were invited to participate in a working group with the researchers. An initial meeting was held on 19 August 2022. In this meeting, the research design was discussed which included reviewing the study aims, the need for a comparison group, data collection method and participant recruitment channels. The second meeting, on 30 May 2023, focused on validating the emerging themes from the analysis. Between these meetings, the researchers shared early drafts of the core research material (eg, participant information sheet and consent form) to obtain members’ feedback and suggestions for amendments. The working group has also coauthored this paper.

Recruitment of participants and consent

A key outcome of the first working group meeting was to ensure the study design had a comparison group. This meant recruiting patients or care partners with lived experience of receiving EBRT to enable a comparison to those who had received TARGIT-IORT. The eligibility criteria are based on criteria used previously in TARGIT-IORT clinical trials ( table 1 ). All patients were, at the time of their cancer diagnosis, eligible for both TARGIT-IORT and EBRT.

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Eligibility criteria for interview participants

Participants were first identified by SL and GL at Hampshire Hospitals NHS Foundation Trust in accordance with the eligibility criteria, using purposive sampling (NHS stands for National Health Service, which is provided free for cost to patients in the United Kingdom). This Trust recruited patients to the randomised TARGIT-A trial between 2000 and 2012. Since the National Institute of Health and Care Excellence (NICE) recommendation to offer TARGIT-IORT to suitable patients, they have been offering the procedure to their patients. For this study, GL compiled a list of all patients who received either TARGIT-IORT or EBRT. Prospective participants were stratified first into rural and urban subgroups and then by age (50–60 and 60–70). A randomiser was then applied to these subgroups to ensure the final selection process was free from bias from clinicians who had treated patients. Cover letters and recruitment advertisements (approved by the ethics committee) were posted by GL to 58 eligible patients. Those interested in participating in the study contacted researchers voluntarily. Subsequently, the researchers shared a participant information sheet, consent form and provided further information during a short introductory call where participants also had the opportunity to ask further questions about the purpose and conduct of the research. In total 29 participants responded, and all were successfully recruited to the study. Participant characteristics can be found in table 2 .

Sample characteristics of interview participants

Semistructured interviews

Working group members agreed semistructured interviews should be used to gain rich descriptive accounts of experiences with EBRT and TARGIT-IORT. Members felt discussing sensitive and privileged information, namely people’s experiences of receiving the cancer diagnosis and treatment, would be more uncomfortable in, for example, a focus group environment. Therefore, two discussion guides (one for each type of radiotherapy) were developed and refined with the help of working group members (see online supplemental files 2 and 3 ). Interviews were conducted between 9 February 2023 and 2 March 2023 by researchers SKB, NS and JR who are experienced in using qualitative research methods as part of their professional roles. Each interview lasted approximately 60 min and was conducted virtually through Zoom and either digitally video recorded or audio recorded depending on participants’ wishes. The identity of the interviewer can positively or negatively affect the interviewer–interviewee relationship. Participants were, therefore, asked whether they would prefer an interviewer of the same sex, with the default position being that a female interviewer (NS or JR) will conduct the interview with patients and similarly, a male interviewer (SKB) for male care partners. During the interviews, informal member checking took place by interviewers routinely summarising what participants had said to check for accuracy and understanding.

Recordings were transcribed verbatim, with potentially identifying details anonymised and assigned a unique identifier.

In keeping with a phenomenological approach to analysis, researchers began by writing reflexive accounts. This involved reflecting on their own experiences, preconceptions and assumptions that have the potential to influence interpretations of participants’ accounts. This process helps to create the self-awareness required when attempting to consciously bracket out thoughts and opinions that could lead to bias.

Reflexive thematic analysis based on Braun and Clarke’s 37–39 six-step approach was used to analyse the qualitative data and to identify recurring themes related to patient and care partner experience ( figure 2 ). The process of data familiarisation took place during data collection, postinterview reflections, transcribing and re-reading the transcriptions and interview field notes. Initial transcripts were individually coded (identifying units of meaning) by two researchers (SKB and NS) who then reviewed the other’s codes. Through subsequent discussion and reflection and agreement that theoretical saturation was sufficiently achieved, codes were finalised and applied throughout the remaining transcripts. Through an iterative process, descriptive and interpretative codes were categorised to form 28 subthemes and 11 major themes. Microsoft Word and Excel were used to facilitate coding, grouping and text retrieval to identify illustrative quotes.

Reflexive thematic analysis (adapted from Braun and Clarke, 2020). 37

Patient and public involvement

Patients were involved in refining the research question, study design and outcome measures. Their contributions during these discussions were informed by their lived experiences, priorities and preferences during the first working group meeting (described above in the ‘Methodology, Working group’ section). Participant identification and recruitment channels were also discussed with the patient-led working group though they were not directly involved in recruitment into the study nor in the conduct of the study. The results of the study will be disseminated to the study participants once the peer-reviewed paper is published. The burden of the intervention was assessed by the patients themselves for this qualitative study.

The following section presents findings from the thematic analysis which looked at EBRT and TARGIT-IORT separately and the outputs from discussions of the second working group meeting ( table 3 ). Participants’ quotes have been labelled with identifiers (eg, P1, P2) not known to anyone other than the researchers (ie, not the hospital staff, participants themselves or anyone else).

Themes and subthemes arising from the interviews

Themes coming out of interviews with patients who had EBRT

Dissatisfaction with unalterable elements of ebrt procedure.

The majority of EBRT participants expressed discontent with many of the standard elements of the EBRT procedure. Some participants felt intimidated by the size of the room being ‘disturbing’ (P22) and the radiotherapy machine being ‘scary’ (P19):

…the room that you go into where the machine is, is cold…it could be a bit warmer. Now, some of that could be psychological because you're in a big white room with a big, huge machine… (P3) …the 2 nurses go into another side room, so, you feel so alone, and you know, and this machine sort of moving around you. It’s, it is quite scary to deal with. (P19)

Four participants also described the challenge associated with needing to hold one’s breath during sessions. This is done with the hope that the heart may receive less radiation by pushing the chest wall and the breast away from it. Participants described it as saying, ‘ that was the worst bit’ (P12), ‘ it’s going to be difficult’ (P15), ‘ I don’t want to be zapped on my heart’ (P21) and another felt it was ‘ really claustrophobic’ (P19) or causing ‘ panic’ (P19). The planning appointment required for EBRT was met with similar dissatisfaction. While there is a clear appreciation for healthcare staff and their workload, participants were unhappy with the dehumanising nature of these appointments:

You become another face… you do feel like a slab of meat while they're trying to get you in the right position and it’s not a pleasant experience. (P19)

These experiences resonated with working group members’ recollections: ‘silent’ and ‘cold, dark room’ and finding it difficult, a ‘physical challenge’ to maintain position after surgery. Another member felt that while healthcare staff were pleasant, the experience of receiving radiotherapy itself is ‘quite traumatic’ and emotional, ‘I remember lying there and tears came from nowhere…’.

As with study participants, working group members acknowledged that while healthcare staff themselves are not at fault, the ‘system’ causes the dehumanising elements described by participants referring to poor staffing levels and a high-pressure work environment within healthcare.

In contrast, one participant positively describes the EBRT sessions, ‘ there’s music on, and I didn’t find any cause to worry at all’ (P15). The relaxing effect of music was echoed by a working group member who also recalled how music helped in which she felt was ‘ brilliant’ and stated ‘ it helped my head’ .

Finally, one-third of participants expressed a strong objection to being tattooed which was required to ensure radiation is delivered to the right location.

What really did wind me up actually, I had to have the 3 dots tattooed on me and I didn’t want tattoos. (P3)

Participants were frustrated by the fact that it is permanent, the colour used and two participants felt it affected their confidence in wearing certain clothes, ‘ I can still see that now, if I wear a swimsuit or something’ (19 ). One working group member felt that patients are often uninformed about radiotherapy and that patients’ preferences are not listened to. She concluded that this was a good example of an area that required adequate information sharing at the right time.

Unanticipated disruptions cause helplessness

One-third of EBRT participants experienced either delays on the day of the EBRT session or extensions to their course owing to either machine failure or staff absences. The impacts on patients and care partners include stress, aggravation and disappointment with knock-on consequences proving to be burdensome:

…the machine broke down…but I couldn't find [the new hospital], and I got really tired and upset. I was trying to find where I was supposed to go, and nobody seemed to know, and I just managed to grab the team before they went home. I was like, ‘Give me my last radiotherapy now!’ It was down in some basement I mean. Location S is a maze. So, that was a bit stressy. (P1)

Patients who received their EBRT during the COVID-19 pandemic were unable to have their care partners (in most cases husbands) with them at key treatment stages. This isolation caused additional anxieties in the EBRT cohort as one care partner stated, ‘ it’s disappointing and it would have been nicer for me to be able to support her more…’ (P23). Similarly, a patient participant states:

…it’s anxiety level of just having that, that security blanket of having somebody there with you. (P19)

The working group discussed isolation and the emotional impact during EBRT sessions. Since EBRT continues for days and indeed weeks in some cases (5–6 weeks for all members), patients truly feel alone during this phase. They recalled overwhelming feelings of sadness during the sessions with thoughts such as, ‘ how did I get here’ . One member expressed empathy with study participants who would have had to endure further isolation during the COVID-19 pandemic period.

Straightforward sessions were met with surprise but travelling for EBRT was still a concern

Four out of the 15 participants interviewed from the EBRT cohort, stated that no side effects or other complications were experienced with one participant saying she felt like ‘ one of the lucky ones’ (P20). In the absence of side effects such as pain, burning or tiredness, patients experience a sense of surprise and relief after having received prior warnings from either clinical staff or hearing stories from friends and family.

…they said to put a couple of tubes of aloe vera, and keep in the fridge, and put it on religiously. But I was fine. I was fine. I literally had no burning. No rash, no nothing. I’d heard about friends having burns, but I just didn’t, I didn’t. (P12)

Similarly, three participants were appreciative of the fact that individual sessions of EBRT were in fact ‘ very straightforward’ (P1) and quick:

I did find the time, actually, went quite quick. It wasn’t very long; it might have been an hour. Yeah, it wasn’t too long. (P1)

Although these four participants did not experience radiation-related side effects, it should be noted that two of the four participants did, express frustrations about the burden of travelling during EBRT sessions and that the overall radiotherapy course was ‘ time-consuming’ (P2).

Disruption to normal life routines

A few participants were either employed or self-employed and described how EBRT impacted their own work performance (eg, tiredness, weakness in arm) with one person concluding, ‘ I’m an office worker but if I’d be doing a manual job, I think it might have impacted more.’ (P3). There is also the realisation that patients would likely need to adjust work sessions to accommodate for the EBRT sessions and the related side effects: ‘ I’ve worked out a part time basis to get back into work.’ (P19).

Participants shared concerns about the impact on work colleagues. One participant states: ‘ I’m the only person that does my job. So, I was acutely aware that when I’m not at work other people are picking up my job’ (P19). Similarly:

…we were a short-staffed team, I was aware that when I wasn’t there, it was putting work onto other people, and I felt I should have been there…. (P3)

The EBRT cohort also revealed the emotional toll of work-related worries and impacts, and the work guilt associated with the impact on colleagues. Similarly, the potential impact on the care partner’s work is also, clearly, a significant consideration for patients:

The first night after my first session I was in so much pain, I mean I didn’t sleep a wink the first night. It was absolute agony…it was my self-confidence, and everything was destroyed…and I didn’t dare, I didn’t want to wake my husband up. He had to go to work early, so then he could take me to radiotherapy in the afternoon. (P19)

These impacts on employment were corroborated during working group discussions. One member, commenting in particular on self-employed people, described the impact on financial standing and home life as ‘catastrophic’.

In contrast, those who had flexible hours of working were less affected, as one patient participant describes her care partner: ‘ luckily he was doing a job where could sort of pick and choose what he did and his hours, so it was all right.’ (P3).

The repetitive nature of the EBRT sessions, the travel involved and the side effects experienced all also impacted on participants’ normal daily routines. For instance, home activities such as shopping, gardening and caring responsibilities were impacted:

I think we might have cut down [caring for elderly parents] to once a week instead of two or three times… (P3)

One participant mentioned a close family member taking a week off from work to support looking after her, her husband, family pets and ‘ doing a few household chores like pushing the Hoover around’ (P22).

Severe pain brought on by EBRT was described as ‘ agony’ (P19) both during sessions and after sessions (P7). Ongoing pain months and years after the radiotherapy means patients need to settle into a new norm, now constantly having to be aware of their own ‘ limitations’ (P6):

I’m still aching like mad from [radiotherapy], that’s two years later and I’m still achy and in pain. (P6)

For working group members, these experiences were familiar. One member clarified that although there were no specific side effects from the radiotherapy the disruption to life was ‘ hugely problematic’ .

Many of the patients who received the FAST-Forward protocol included sessions on either side of a weekend resulting in a total of 7 days to complete the course. No participants complained specifically about the weekend being involved in this way however many described dedicated activities for the weekend, for example, food shopping, family commitments and short trips away which would undoubtedly be affected while in active treatment.

Conversations with participants revealed personalities play a role in patients’ cancer journey. One participant felt the emotional impact of radiotherapy treatment (and the subsequent withdrawal of routine contact with healthcare staff) more than all the others. The anxieties associated with this perceived void and the mental health impact itself are disruptive to re-engaging with normal life and routines:

…you’ve got people checking on you as in consultants or the breast care specialist nurses, your GP, the radiographer, people ringing you, checking on you, you’re seeing them all the time. After the radiotherapy, I’m suddenly though on my own now. I didn’t realise it was a real security blanket…it was so reassuring to seeing the consultant and seeing this nurses every day. That was the bit where I took a bit of a dive…I had two or three days where I couldn’t stop crying, I thought, ‘Oh I’m on my own now’… (P12)

There were also those who demonstrated a pragmatic mindset viewing any discomfort and impactful delays associated with EBRT sessions as realities to, in effect, take in their stride, ‘ any inconvenience, you just get on with it.’ (P20 )

Travel is clearly an uncomfortable reality and a demanding aspect of receiving EBRT. Many participants complained about the repeated journeys required for EBRT sessions. The burden has been described as ‘ dreadful’ (P7) with people feeling ‘ exhausted’ particularly where the effects of radiotherapy (tiredness and pain) are felt. The burden of travel also manifests as experiencing a longer day overall as well as the sheer cost of public transport used to make the trips independently:

It’s a pain having to go to Location S, there’s a hospital there where the bus doesn’t even go. So, from Location O, I have to get a bus from here to Location H, then wait half an hour, then from Location H to Location W, bus station, then a taxi to the hospital. That all costs 30 quid and is time-consuming, and when you’re sore, it’s not ideal. (P2)

In the majority of cases, there is a reliance on others (the husband but on occasion friends or children) to drive participants to the EBRT sessions. While there are no direct statements indicating a burden to care partners, it is important to note that in these cases both the patient and the care partner endure the repeated journeys:

My husband drove…I’m not a good driver…I certainly can’t park so it was good that he went with me because in case, if something went wrong or something because he’s like my rock he is. (P3)

The location of the EBRT sessions is critical to the quality of patient experience and when participants were presented with two hospitals to choose from it was clearly valued:

…it’s the same surgeons, all the same team, who were in Hospital W or B. I opted for Hospital B, it’s nearer to me and I could get to Hospital B easily, whereas Hospital W was an ordeal for me. (P21)

Two participants who were retired and for who the location of the hospital was particularly close indicated that travel was not a burden and considered themselves ‘ very lucky’ (P22), though of note, one of these participants experienced no EBRT side effects which may have contributed to relatively positive experience.

In contrast to many of the experiences described above, one working group member shared that she was relieved to have regained her independence since she was able to travel to her EBRT sessions herself. However, the working group notes that all their experiences included a difficult period of receiving chemotherapy first where radiotherapy was viewed as the ‘lesser of evils’.

Experience characterised by discomfort from side effects

A wide range of side effects, clearly attributed to EBRT, were reported by the vast majority of participants and this characterises an important part of the EBRT experience. These included varying intensities of tiredness; burning (from warm sensation to blistered and sore); skin-related conditions (dryness, itchiness, rash); pain; and breast size and density changes. The most common complaint was tiredness:

…there were 3 or 4 days the following week when I just had to go to bed, or just have to, you know, lie on the sofa in the afternoon, or you know I was just really bombed out, and I’m not someone who goes to bed and afternoon normally, I’m always busy, and but I had to. I was knackered. (P12)

EBRT sessions can be very uncomfortable. Severe pain, described as ‘ agony’ (P7, P19) was experienced by two participants. One individual, unable to withstand the pain and the tiredness experienced, made an independent decision to stop attending the sessions for a few days:

I was very tired…I think I might have missed a few days, because I couldn’t make it in between…I thought I’ve done so much now, I’m not going to go anymore because it was really, really hurting…I just wanted it to end and go away? And not think about it anymore basically. (P7)

Patients experienced some side effects such pain in the breast or weakness in the arm for a prolonged period—months and years after the EBRT sessions. There were also reports of new symptoms requiring follow-up that were attributed to EBRT. One participant (P8), who felt uninformed about the ‘long-term, lasting and late effects of radiotherapy’ had developed a new pain under her ribs—she reflected:

I would not have had radiotherapy, and I would not be beating myself up about having had it now had I been given the full information about the long-term effects. You know, it’s life-shortening, radiotherapy is life shortening in itself like chemotherapy. (P8)

During discussions at the second working group meeting, members were not surprised by the insights captured from study participants and felt strongly that there were ‘no positives’ from EBRT (particularly when compared with TARGIT-IORT). One member reflecting on their experience with EBRT stated they came away thinking ‘almost anything is better than this.’ (WG member)

Specific anxieties about receiving EBRT

Discussions with the EBRT cohort revealed three main anxieties associated with receiving radiotherapy. First, while there is evidence that more information early on (particularly from consultants) helps to reduce worry, stories of radiotherapy experiences from friends and family members can raise concerns and anxiety levels:

I only knew what I knew as a lay person, you know, various friends have had radiotherapy, unfortunately, people know a lot of people who have all these sort of things… I’d heard about friends having burns… (P12) …and actually, talking to another friend, she said she would do chemotherapy any day over radiotherapy because of how the radiotherapy, the pushing around and making you feel like a piece of meat, how it how it made her feel. (P19)

The second concern was the potential for radiation to cause harm: (a) so soon after surgery and (b) to healthy tissue and organs: ‘ You’ve got to heal a bit; you can’t go straight into radiotherapy because obviously you’re as raw as hell’ (P6). Two participants in particular experienced discomfort in their arms during their EBRT sessions—one participant had a number of lymph nodes removed from the armpit and one participant developed a seroma which is an abnormal accumulation of fluid following surgery. A working group member shared a similar experience where the development of seroma delayed the start of her radiotherapy course.

Another participant who was particularly concerned about unnecessary radiation exposure requested that only half the breast be irradiated because she wanted ‘ the absolute minimum’ (P8). Similarly, another care partner described his wife’s concerns:

One thing is that my wife was worried about was the radiotherapy because obviously there is this thing with radiotherapy, particularly on the breast, of potential damage to the lungs and she was very concerned about that. (P23)

Third, since many of the participants received their EBRT during the COVID-19 pandemic, a few expressed worries about potential delays either due to staff shortages, protocol-driven cancellations (ie, limiting patient numbers) or themselves contracting COVID-19 (since multiple visits are required with EBRT) and thereby being unable to attend hospital:

But COVID was going on and I remember being so scared that my appointments would be cancelled. (P12)

Targeted Intraoperative radiotherapy using Intrabeam

Perception that targit-iort is efficient and aggravation-free.

Of the 14 TARGIT-IORT participants interviewed, 11 indicated the one-off feature of the procedure was appealing. There are many references to how quickly the procedure was completed ‘ it’s lovely to get it all done and finished with on the day’ (P26). Similarly:

…having it done and dusted, and then then waving goodbye at the hospital gates, it was like why, why would I say, ‘No thank you’? (P16)

As a consequence of this efficiency, there is relief that the procedure permitted radiotherapy to be administered without any COVID-19-related delays, or exposure to the COVID-19 virus during travel or hospital during the multiple visits for EBRT, or complications for which three participants had expressed initial concerns:

I was just delighted that it was dealt with really, really quickly, because back at that time the news was full of things where, you know, because of COVID-19, you know, everything has been delayed, and people not getting cancer treatment and that was one of my, I remember having that conversation with the consultant and said, ‘Look are we going to be delayed’. (P25)

There is a similar relief detected in participants discussing the potential positive impact TARGIT-IORT can have on patient’s mental health as one care partner states:

…the alternative would have been [EBRT]… her symptoms of depression are she gets very, very tired… so intuitively our reaction to [TARGIT-IORT] was… actually quite a good idea. (P24)

Going through a cancer diagnosis and receiving treatment was clearly an emotional time. One participant was impressed with TARGIT-IORT precisely because the efficient delivery of radiotherapy facilitates her moving on quickly:

…the beauty of intraoperative radiotherapy is that I could say ‘OK, been there, done that, move on. (P9)

Convenience of performing TARGIT-IORT during surgery is valued

Most participants from the TARGIT-IORT cohort shared why they preferred to receive radiotherapy at the same time as the surgery. There is a recognition of the convenience that TARGIT-IORT brings as a result of not having to attend hospital on multiple occasions, for example, less travel and car parking and supporting independence (particularly for retired individuals):

It’s my choice to have [TARGIT-IORT] because I thought that it was a better option for me particularly because I live on my own and it would allow me to be more independent. (P18)

While the majority of participants were retired, those who did have young children felt TARGIT-IORT supports their caring responsibilities: ‘ I’ve got a [child] and I’ve got to look after him… This is a better way to go…’ (P14). Additionally, one retired participant who valued the independence TARGIT-IORT facilitated concluded it would also suit younger, busy, women well:

…particularly for younger women this would be an extremely good thing, if they're working, it allows them to get back to work without that constant interruption and if they've got a young family. (P18)

Many participants were able to draw from stories and experiences they had heard from friends and families. The apparent inconvenience and impact of daily radiotherapy doses discouraged patients from EBRT when TARGIT-IORT was presented as an option. One participant whose father received daily doses for prostate cancer felt she would ‘ rather get it all over in one go’ (P10). Similarly:

[TARGIT-IORT] was perfect, because it just meant I didn't have to queue up in the car park with the other poor people having radiotherapy, and I did have friends who had serious cancers who were having radiotherapy at the time, and it was just miserable. (P9)

There is also a perception that with TARGIT-IORT recovery times are likely to be faster since it would signify the end of their cancer treatment: ‘ I’m going to get [TARGIT-IORT] and it’s done’ (P16) and ‘ I can just then get on and recover’ (P4). Another participant summarises her main reasons for opting to receive TARGIT-IORT:

So, there were probably 3 reasons I went for [TARGIT-IORT]. You know, COVID, convenience, and the fact that I thought, you know, ultimately, I’d probably recover quicker. (P9)

Only one participant from the TARGIT-IORT cohort, a care partner, described a significant logistical impact due to his wife’s cancer treatment in general:

…created quite a challenge really for me, I mean, I was never going to moan about it, I wasn’t the one who just had cancer surgery! But you know, it meant the days suddenly got very challenging… (P25)

Perception TARGIT-IORT is a safer alternative to standard practice

Five participants felt that they did not experience any complications as a result of TARGIT-IORT and were able to resume their normal activities quickly. While there are a few cases of soreness and itchiness that participants specifically attributed to TARGIT-IORT, most participants did not report the range of side effects seen in the EBRT cohort. As a result, participants gave their endorsements for TARGIT-IORT, respectively:

I moved around, I got up, got changed, got dressed. It was surprising actually, this is why I’ve decided to do this, if this is what it gives you then everyone should have it. You know you don't need to feel debilitated, and you can carry on with your life. I've got a [child], and I've got to look after him. So, if you can, why not. This is a better way to go if the prognosis allows it. (P14) There were no, no after-effects, no problems. It all healed up very well, because it was quite a small incision anyway and very, very successful. (P28)

The majority of participants felt the procedure prevented healthy tissue and organs from being unnecessarily exposed to radiation because ‘ the radiotherapy is directed immediately where the lump [is]’ (P17).

I confess I heard that and thought ‘God, that’s a bloody good idea, why don’t they do that more often?’. Because obviously if you don’t have to beam through loads of flesh and muscle to get at what you're aiming for then that’s got to be better to be honest. (P24)

A few participants described side effects (soreness, tiredness), precautions (new bra needed, seatbelt cushion) and restrictions (no pressure, sport, lifting), however, they were unable to clearly attribute whether these were related to the surgery or the TARGIT-IORT procedure since both occur at the same time.

…yeah, my arm was a little bit sore…I’m sure it must have been the radiotherapy or the operation, I don’t know. (P29) …a special seat belt cushion that protects your breast from the seat belt and I had one another cushion under my breast supporting it… (P11)

Novel nature of TARGIT-IORT impresses while prompting early caution

Although it has been in use for the last 25 years since the first case was done in 1998 TARGIT-IORT is seen as novel and innovative with advantages acknowledged over EBRT. The decision to proceed with TARGIT-IORT is widely considered ‘ easy’ (P28) or ‘ intuitive’ (P24) or a ‘ no brainer’ (P4):

…well, you’re in there, so you might as well get on and do it and that would surely save the need for me having to come back, I can then just get on and recover basically…it was a no brainer for me, an absolute no brainer. (P4)

However, a few participants described their initial concerns since TARGIT-IORT was introduced by the consultants as a clinical trial and was largely unheard or ‘ unknown’ (P9). Care partners, often husbands and sometimes participants’ children wanted to carry out their own research to help making an informed decision about TARGIT-IORT. One participant had already felt she was convinced by the consultant’s explanation and the advantages over EBRT, however, her daughter, who worked in healthcare, stated ‘ …‘hold on a minute, we need to look at the statistics and the recovery times, side effects’…’ (P10). Similarly, another participant’s husband wanted an opportunity to ask the consultant more questions to help feel more reassured:

…but [care partner] just wanted to have the conversation around the intraoperative radiotherapy because it was an unknown really. (P9)

It should be noted that many of the participants were either themselves or their close family (eg, husband) highly educated, often with a science-based background and were able to explore clinical study papers and statistics: ‘ I’ve got a little statistical training…so I looked at the stats and what the mean variation was…what the levels of certitude at either end of the scale were…’ (P24).

TARGIT-IORT patients have high information needs

As mentioned above, due to the relative novelty of TARGIT-IORT and in the absence of experiences of TARGIT-IORT among participants’ friends and family, reliable information from trustworthy sources is critical. The majority of participants (in both EBRT and TARGIT-IORT cohorts) displayed high levels of trust in their consultant. Receiving adequate information from them about TARGIT-IORT, particularly due to its initial availability via a clinical trial, was appreciated:

I think what was good was the way that it was explained in the first place and what the pros and cons were, or if in fact, there weren't any cons really at all…So, you know, we were told that the treatment, doing it during the operation, is just as effective but it would mean that you would have no subsequent radiotherapy and, you know, of course I’m young and foolish, I assume that to be true, we trust the doctor… (P25) [The consultant] said’ ‘This is this, that is that…pluses and minus’…gone through pros and cons and I had made up my mind that that was a good way to go. (P14)

Working group members could relate closely to this subtheme of trust. They explained that the retrospective perception of TARGIT-IORT was always likely to be a ‘no brainer’, however, for a patient going through the highly emotionally charged process of receiving their diagnosis and treatment, at a time when they are already overwhelmed with new information, the relationship with the doctor is important:

…if it’s being offered to you, it’s important how it’s being offered to you. We put out trust in, so much, our doctors. (WG member)

Two participants described receiving explanations from radiation oncologists during their presurgery appointment, however, these discussions were not influential in helping to decide which type of radiotherapy they would receive. A few participants were wary of using the Internet to search for information related to their treatment options: ‘ I’m very cautious of what information I take in from Google’ (P4). However, the majority did conduct their own Internet searches to bolster their understanding of TARGIT-IORT:

I then went away and looked the bugger up, and then you could learn for yourself a little bit, reading between the technical stuff, what it’s all about, the success rate is there or there about the same, it’s not wonderful but for me, it was a no brainer. (P16)

The provision of information was discussed on a number of occasions by working group members. Simple and clear language is particularly important at a time when patients are already in a vulnerable, stressed and emotional state:

…you are so blindsided…the normal way you operate doesn’t necessarily apply. (WG member)

Working group members pointed to the need for information sources to be created adequately in the first place, for example, being written by patients/care partners who possess the lived experiences and so are able to elaborate on the areas that matter.

…there should never be a need for a patient to go home and want to Google, you should go home with the information in hand or go home with reputable evidence-based sources of information. (WG member)

The primary finding of this study is that the subjective experiences of patients and care partners receiving EBRT or TARGIT-IORT differ significantly. Strong recurring themes of appreciation and recognition of innovation, convenience, absence of side effects and lack of disruption to life have emerged from the TARGIT-IORT cohort while in the EBRT cohort, we have largely heard about discomfort and disruption to life. These themes—centring around (a) treatment procedure itself; (b) impact on QoL and (c) information needs—were presented to and were validated by a patient-led working group.

Patients and care partners involved in this study described numerous challenges, concerns and dissatisfaction with elements of the EBRT procedure while processing a difficult and emotional diagnosis. These findings are consistent with the existing literature on EBRT experience. 25 Probst et al 25 also identified procedural grievances, for instance, patients described the radiotherapy sessions as ‘dehumanising’, ‘emotionally draining’ and complained about the tattoos being a permanent reminder of the cancer. Previous studies exploring patient-perceived barriers to radiotherapy include patients’ fear surrounding radiation toxicity which can result in non-compliance and insufficient treatment. 13 40 In fact, research has identified that fears and anxiety regarding the EBRT experience can influence a patient’s decision to opt for a mastectomy over EBRT, despite the latter having equivalent if not non-inferior survival rates. 30 Several studies have demonstrated that as the distance from radiotherapy centre increases, the rate of mastectomy also increases. 41–45 Indeed, this was the primary patient-centric reason that the TARGIT-IORT procedure was originally conceived. 10–12 46

Our study demonstrates the need for improvements in the way EBRT is delivered and has implications for practice that extend to cases where patients are not eligible for TARGIT-IORT. In stark contrast, those receiving TARGIT-IORT have no awareness or recollection of the procedure since radiation is administered during surgery. Patients and care partners found this feature particularly appealing which contributed to their decision to opt for TARGIT-IORT. Indeed, TARGIT-IORT has been widely adopted elsewhere and treated 45 000 patients across 38 countries. 6

A high proportion of our EBRT cohort (12/15) received the FAST-Forward regimen. This regimen of highly compressed higher-dose-per-fraction radiotherapy was adopted in the UK even before the results of the FAST-Forward trial were published with the aim of reducing waiting time pressures during the early part of the COVID-19 pandemic. We recognise this 5-day regimen is indeed not adopted elsewhere in the world—it has much higher toxicity—19 times higher fibrosis and a quarter of women reporting hardened breasts 3 and this toxicity is seen even with the short follow-up of the FAST-Forward trial. 47 48 It is noteworthy that a large part of the patient’s perceived benefit came from the immediacy of TARGIT-IORT due to its administration during the same anaesthetic as their lumpectomy, the resulting convenience and the absence of additional hospital visits for radiotherapy that would be otherwise required for EBRT. In our study, this benefit of TARGIT-IORT was perceived by patients even though the majority of the comparator group received EBRT over just 5 days rather than the international standard of 3 weeks. It is, therefore, likely that the contrasting experience of patients may have even higher significance and the perceived benefit may be greater when TARGIT-IORT is compared with 3 weeks of EBRT.

Patients in the study who received TARGIT-IORT had been given the option to have it because they fulfilled the eligibility criteria ( table 1 ). Since patients made a conscious choice, it is plausible that the results of this study could be biased favouring TARGIT-IORT. However, the authors of this study submit that patients should be given a choice. Our study shows that those who choose TARGIT-IORT have a positive perception of treatment and the overall experience is better than those who opted for EBRT. Others have shown that if given a choice between no radiotherapy, mastectomy, EBRT and TARGIT-IORT, 75% of patients preferentially choose TARGIT-IORT. 24

It is evident that QoL-related benefits and impacts are a central component of radiotherapy lived experiences. Compared with TARGIT-IORT, EBRT has a prolonged impact on patients and perhaps a compounded impact on QoL where patients live alone (lack emotional or practical support), do not drive (reliance on others or public transport with additional costs and travel time) or have caring responsibilities (partners, parents, children and pets). Travel and mobility issues have been recognised as barriers already 49 as has the inconvenience of a prolonged treatment plan which can affect those living in remote areas even more. 13 Our findings demonstrate the advantages TARGIT-IORT offers to those who are eligible. All participants in our study acknowledged the efficiency of the procedure with many drawn to the option (over EBRT) because it was considered ‘straightforward’ and ‘over-and-done’ during surgery. The benefits of TARGIT-IORT to patients in terms of cost, travel time and distance have been demonstrated, in principle, elsewhere. 49 50 Furthermore, the environmental and social impact of the substantially more travel required for EBRT, and a huge reduction in carbon footprint from cancer treatment by use of TARGIT-IORT has also been well documented. 20

In our study, inconveniences and logistical complications were exacerbated by EBRT side effects which were recognised as a key characteristic of the EBRT patient experience and have implications on QoL. Stanton et al 51 investigated factors affecting QoL during and after radiotherapy and found that functional impacts of treatment, particularly breast-specific pain (eg, mobility) are important correlates of QoL. In addition, Schnur et al 27 showed that key patient concerns include the timing of side effects and the impact of side effects on self-esteem affecting patients’ perception of being attractive, good workers, patients and parents. Another study supports these findings and also shares one case of such extreme physical discomfort (pain, burning, etc) that the patient admitted she had considered ending treatment and another saying she would never choose to have radiotherapy again due to the burning sensation. 28 Our study has captured similar cases. This study also underscores the emotional toll, anxieties and stresses that disruptions to life (eg, work-related) cause and have been heard at a NICE Committee meeting. 52 There were fewer reports of side effects directly attributed to TARGIT-IORT in our findings. This is consistent with a study comparing TARGIT-IORT with EBRT (quantitatively) in which patients receiving TARGIT-IORT also reported less pain, fewer breast, and arm symptoms, and better everyday functioning when compared with patients receiving EBRT. 14 We recognise that our study has found stark differences in patient experience and perception between TARGIT-IORT and EBRT. This can seem obvious because patients with TARGIT-IORT have almost no poor experience in relation to actually receiving the treatment (mainly because they are under general anaesthetic when it is given). Our findings resonate with others who also report the negative patient experiences with EBRT and have suggested interventions to improve them. 25 The important qualitative patient benefits identified in this study are of course in addition to the quantitatively proven significant reduction in non-breast cancer deaths, and an improved overall survival in patients with grade 1 and grade 2 cancers within the randomised TARGIT-A trial. 7 However, our study does detect apparent patient obscurity between surgery-linked or TARGIT-IORT-linked side effects—this clearly needs to be addressed through appropriate education and adequate information provision.

Results from our study cohorts point to the need for improvements in communication and information provision. The role of high-quality communication by healthcare staff and access to emotional support services, particularly when radiotherapy treatment ends has been highlighted already. 26 Previous research has also identified that patients can often feel mystified by radiotherapy (EBRT), how it works and will have anxieties about life and health after radiotherapy 27 or feel disempowered and lacking the ability to make an informed choice. 25 In our study, working group members emphasised the importance of trust in connection with information provision, particularly during an emotional cancer diagnosis. Members felt a number of study findings could be addressed adequately by effectively communicating the right information at the right time. Examples include letting participants know clearly that tattoos will be permanent; what the immediate and long-term side effects of both radiotherapy types are; understanding the side effects of surgery thereby avoiding confusion with TARGIT-IORT; ensuring TARGIT-IORT explanations are always supplemented with lay language overviews of the efficacy and safety profile compared with EBRT. One study showed that more than 90% of patients felt that if they were more informed about radiotherapy, they would be less scared about it. 30 The working group advocated for any shared information, such as leaflets, to be written by patients, that is, those who have experiences of receiving radiotherapy, and therefore, have an awareness of where there are likely to be challenges in understanding treatments and their impacts clearly. Similarly, considerations also ought to be given to ensuring people with learning disabilities and communication difficulties are able to make an informed choice by developing accessible information. To satisfy ‘valid consent’, doctors in the UK are now obliged to follow the new GMC guidelines underlining the essential nature of adequate patient information, 53 about all proven treatment options, even if they are not available at their own centre. In the UK, this powerful principle is now fully enshrined in law (Montgomery vs Lancashire Health Board, 2015). 54 55 The substantially better patient perception and experience documented in this study need to be included during consultations with patients when discussing treatment options before they have their surgery for breast cancer.

This qualitative study, co-led by patients, uncovered detailed lived experiences of receiving either EBRT or TARGIT-IORT from patients treated for early breast cancer, as well as those of their care partners. The research demonstrated a patient-perceived superiority of TARGIT-IORT over EBRT—it is considered more efficient with less disruption to life routines. The paper also illustrates the importance of provision of accessible information about all radiotherapy treatment options from trusted sources, at the right time (before breast cancer surgery), to reduce initial anxieties and help patients make informed choices. These new insights need to be taken together with the established quantitative survival and QoL benefits of TARGIT-IORT over EBRT. We believe that these deep insights into the patient’s perspective will substantially improve our understanding of the lived experiences of patients with breast cancer and will help clinicians, patients and policy-makers to comprehensively consider how access to better treatments can improve patients’ lives.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involves human participants and was approved by Health and Social Care Research Ethics Committee B (HSC REC B), Office for Research Ethics Committees Northern Ireland (ORECNI). IRAS Project ID number: 320976. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors thank the patients and care partners who volunteered to help in development of the research question, helping design the study and outcome measures. The authors thank patients and care partners (the study participants) who volunteered to participate in this study. We are grateful to them for giving up their time and sharing their treatment experiences and valuable insights during a difficult period in their lives for the benefit of science and clinical research.

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X @jsvaidya

Contributors SKB, NS, CH, ME-O'C, SF, DW and RW were responsible for the study concept and design. SL and GL identified patients who met the eligibility criteria. SL, GL and JSV contributed to the study design. GL posted cover letters and recruitment adverts to all identified patients. SKB, NS and JR collected the data. SKB and NS analysed and conducted the thematic analysis from the data. ME-O'C, SF, DW and RW approved the initial report. SKB and CH wrote the first draft of this manuscript. JSV and all other authors were involved in interpreting the data and made substantial contributions to the intellectual content of the manuscript and approved the final version. The authors took full responsibility for the manuscript. SKB is responsible for the overall content (as guarantor).

Funding The study was sponsored by MediPaCe. Unrestricted funding was provided to MediPaCe by Carl Zeiss Medtech AG. The manufacturers of the Intrabeam device (Carl Zeiss Medtech AG) did not have any part in concept, design, or management of the study, or in data analysis, data interpretation, or writing of the report. A grant/award number was not issued for the funder.

Competing interests This qualitative study was initiated by MediPaCe, a patient engagement and patient research company. The manufacturers of the TARGIT-IORT device (Carl Zeiss Medtech AG) did not have any part in concept, design, or management of the study, or in data analysis, data interpretation, or writing of the report. Authors SKB, NS, CH and JR are employed at MediPaCe. MediPaCe received payment to independently plan, coordinate and conduct this study. JSV declares Support from University College London Hospitals (UCLH)/ UCL Comprehensive Biomedical Research Centre, UCLH Charities, HTA, NIHR, National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme, Department of Health and Social Care, UK Ninewells Cancer Campaign and Cancer Research Campaign (now Cancer Research UK); Research grant from Photoelectron Corp (1996–1999) and for supporting data management at the University of Dundee (Dundee, UK, 2004–2008) and travel reimbursements and honorariums from Carl Zeiss. SL and GL declare no conflicts of interest.

Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer reviewed.

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

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• Open access
• Published: 19 August 2024

Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study

• Emma J. Chapman 1 ,
• Carole A. Paley 1 ,
• Simon Pini 2 &
• Lucy E. Ziegler 1  

BMC Palliative Care volume  23 , Article number:  208 ( 2024 ) Cite this article

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Metrics details

A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?

Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes.

The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients).

Conclusions

A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.

Peer Review reports

A conceptual model of effective symptom management was previously developed from qualitative data derived from interviews with healthcare professionals working in English hospices to elicit their views about the barriers and facilitators of effective symptom management [ 1 ]. The model delineated the successful symptom management experience into four steps of: engagement, decision-making, partnership and delivery. Constructs contributing to these were identified (Table 1 ).

Our original model was based solely on Healthcare professional (HCP) input. However, the perception of professionals may vary from that of patients and carers. A recent patient and professional survey of needs assessments in an oncology inpatient unit showed discrepancies between perception of unmet needs between staff and patients [ 2 ]. For this reason, we were concerned that what was deemed important by HCP working in palliative care may not mirror the concerns and experience of patients and carers.

Here we aimed to answer the question; does an HCP data-derived model represent the experience of patients and carers of people with advanced cancer?. If necessary, the original conceptual model of effective symptom management will be updated.

Qualitative, semi-structured interviews were chosen to gain an in-depth understanding of the experience from the perspective of a range of patients and carers. All methods were carried out in accordance with the principles of the Declaration of Helsinki. Ethical approval was granted by a UK research ethics committee ( North of Scotland [ 2 ] Research Ethics Committee (20/NS/0086)). Verbal, recorded informed consent was given using a verbal consent script (Supplementary information 1). Our original intention had been to conduct interviews face to face facilitated by a set of laminated prompt cards based upon those used in the HCP interviews. However, adaptation to telephone interviews in patient’s homes was necessary due to COVID-19 restrictions and it became apparent that the card exercise did not work well remotely. We continued interviews based on the interview schedule but without the use of prompt cards. EC is a female, non-clinical senior research fellow in palliative care. She has experience of qualitative interviews and led the development of the original HCP-based model of effective symptom management [ 1 ]. Audio recordings were transcribed verbatim by a senior academic secretary.

Recruitment

Participants who met the inclusion criteria were identified by a research nurse at the participating hospice. Eligible patients were those who met all 5 criteria:

Diagnosed with advanced disease (i.e., cancer that is considered to be incurable).

Had been referred to the participating hospice.

Were 18 years of age or over.

Were able to speak and understand English.

Were able to give informed consent.

Eligible carers were people who met all 4 criteria:

Were the informal carer of an eligible patient (who may or may not also be participating in the study).

Patients or carers were excluded if they:

Exhibited cognitive dysfunction which would impede their being able to give informed consent and take part in the study.

Were deemed by hospice staff to be too ill or distressed.

Access to the inpatient unit was not possible at this time due to Covid-19 restrictions. The research nurse introduced the study, provided a participant information sheet and completed a consent to contact form. The first contact with the researcher was made by telephone to confirm (or not) interest in participation and answer questions. An interview time not less than 48 h after provision of the participant information sheet, was scheduled. The researcher and the participant information sheet explained the overall aim of the RESOLVE research programme to improve health status and symptom experience for people living with advanced cancer (Supplementary information 2). The verbal consent statements made it clear that this was a conversation for research purposes only and would not have any impact on the care the patient received (Supplementary information 3). Permission was granted that the researcher may contact the clinical team at the hospice if there was a serious concern for welfare that required urgent attention. Verbal informed consent was collected, and audio recorded at the start of the interview with participants answering yes or no to each of the statements in the verbal consent script (Supplementary information 3). Participants were told that we had already interviewed HCPs about what helped or hindered effective symptom management and now we wanted to understand their perspective too.

Data Collection

Interview topic guides (Supplementary information 4 and 5) were used. Interviews were conducted by EC over the telephone and audio recorded onto an encrypted Dictaphone. Files were downloaded onto a secure University of Leeds drive and then deleted from the Dictaphone. No video was recorded. The researcher made brief field notes directly after the interview on impression, emotion and participant backgrounds that were disclosed.

An Excel spreadsheet was used to facilitate data management. We explored the constructs of patient and carer experience as defined by our existing model. An inductive framework analysis was used to align data with themes in the existing conceptual model. A deductive approach was also used to identify new themes not included in the original model. Two researchers (EC and CP) independently conducted framework analysis on all transcripts. Data was then compared and discussed until a consensus data set was developed. The study is reported in accordance with Standards for Reporting Qualitative Research (SRQR) recommendations [ 11 ].

Twelve participants were interviewed in their own homes by telephone. In five interviews a family member or friend was also present, and they were interviewed as a dyad. One interview was with a carer of a patient (patient not interviewed) and one interview was with a patient alone. Interviews lasted between 21 and 45 min. Basic self-declared demographic information was collected (Table 2 ).

One person was approached by a research nurse and provided with participant information sheet. However, when they spoke with the researcher on the telephone it was clear that they had not read the participant information sheet. The individual declined for the information to be read out loud with them. Informed consent could therefore not be given and an interview was not carried out. Upon reflection, this person was keen to informally chat to the researcher but was perhaps seeking social interaction rather than research participation. All other participants completed the interview as planned.

Participant background was relevant as one carer and one patient, had experience of working in healthcare and this may have shaped their experience and understanding. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation.

Data aligned with 18 of 23 constructs in the professional based model (Table 3 ). Pseudonyms are used to protect confidentiality.

Four constructs that had featured in the healthcare professional based model did not feature in the patient and carer derived data. These were perhaps not unexpectedly related to characteristics of staff; Experience (of staff), Training (of staff), Psychological support (for staff) and the provision of formal psychological support (for patients). One construct ‘Guidelines and Evidence’ was not explicitly mentioned by patients and carers. However, a carer did comment that at time of referral to the hospice, the patient had been on two different does of co-codamol simultaneously ‘ You were on co-codamol, the 500/8 plus co-codamol 500/30’ (Patricia, carer) which suggested to the researchers that the patient had been taking the medication in a way contrary to guidelines. Medications were then optimised by hospice staff. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and Impact of COVID-19 (Fig. 1 ).

The conceptual model of effective symptom management in palliative care was updated to also reflect patient and carer perspective. Specifically, the need for support with communication and medicines management plus consideration of the carer burden were included

Carer burden

Our HCP-based conceptual model identified a role for the carer in shaping symptom management experience in either a positive or negative way [ 1 ]. The patient and carer derived data presented here provides additional insight into their role and the activities required of them. Carer burden is a multifaceted experience, however our interview schedule specifically asked about symptom management experience.

The carer was sometimes responsible for raising concerns and initiating the referral for specialist palliative cares support ‘it was at some stage earlier in this year when I was a little anxious about your health and contacted the chemo wing at (hospital) and one of the nurses there thought it would be helpful to me and Patient to put us in touch with (the hospice) (Kathleen, carer).

Carers were enmeshed into the disease and symptom experience of the patient, referring to ‘we’ when talking about the patient’s cancer treatment, pain and referral to hospice.

Olivia (carer): Immune therapy we’d had a reaction to and we’d resolved the reaction but it concluded in stopping any treatment and we then went to a situation where we were not able to manage the pain from the cancer successfully and it was recommended by our oncologist that (the hospice) may have some expertise that we could….

Olivia (carer): Tap into…as I say that was a difficult decision for us to agree for Anthony to go into (the hospice).

However, on occasion the insight from the carer was not acted upon leading to a delay in support for distressing symptoms ‘ I kept saying to people, he’s losing weight, he’s in pain and they just kept saying well he shouldn’t be in this amount of pain ‘cos of what his bloods are like. And I kept saying well what you’re saying he should be like, I can tell you he’s not like and we’re not ones to you know erm (he) isn’t one to be bothering the doctor.’ (Sandra, carer).

Once the patient was receiving palliative care the carer took responsibility for obtaining and retaining knowledge either because the patient could not, due to memory problems from medication, or their condition, or they were not willing to do this for themselves.

Martin (patient): ‘she knows better than me ‘cos I’m always, I’m not very good at remembering stuff’

Martin (patient): I’m not interested no I understand you do have a very important role and she’s taken the lead on it now, that’s definitely the case’

And with another couple

Terry (patient): Sorry I’ve got my wife at the side of me ‘cos she knows better than me ‘cos I’m always, I’m not very good at remembering stuff.

Stacey (carer): I’m usually present yeah, I’m usually around. I tend to be the one that asks more questions.

However, in our interviews occasionally discordance between patient and carer opinion was seen with the carer rating the symptoms more troublesome than the patient’s recollection.

Interviewer: So was it (the pain) stopping you doing any activities that you had been able to do?

Marti, (patient): Oh I see, not particularly no

Mary (carer): I would probably disagree with that sorry. I would say that Martin’s management of the pain and our management of the pain and everything was kind of a constant thing, that’s all we, you know if felt like we were talking about it all the time, his pain’.

Despite an integral role in facilitating effective symptom management carers could feel unacknowledged, specifically by hospital staff. ‘ at the same time they’re telling me I’m not a carer and yet you know Wendy would be in a very sorry state if I wasn’t on the ball all the time’ (Patricia, carer). Specialist palliative care staff were better at providing acknowledgement and consideration of individual capabilities.

Patricia (carer): ‘So they understand that I’m not sort of hale and hearty and I’ve got my limitations….and it’s just lovely them knowing and actually accepting that I am caring for patient, we are doing the best that we can and that they are there for us.’. This simple step of acknowledgement was appreciated and a factor in allowing the carer to continue to support the patient.

Olivia (carer): ‘You know I do feel that it’s about me as well, it’s not just about Anthony which, it is really all about Anthony but you know it’s important that I continue with my wellbeing in order that I can support and look after him’ .

Communication

The impact of communication of effective symptom management occurred at different levels. As would be expected, communication needed to be tailored to the background, previous experience and outlook of the individual. In particular, we noted that a patient who had a healthcare background themselves welcomed more in-depth discussion and input into decision making.

Andrew (patient): I’ve dealt with people with cancers and terminal illnesses. Yeah, I know about syringe drives and everything…The important thing is to be able to discuss it and with my knowledge of medication as well, I mean I can discuss it in depth.’ .

Interestingly, this person also equated being admitted to the hospice with the use of a syringe driver and end of life, illustrating that regardless of the patient’s professional background, a thorough explanation without any assumptions on understanding would still be necessary. Andrew (patient):  ‘I mean I could go into (the hospice) at any time knowing this but with my work record and everything else, I know what it all entails I mean I’d probably go in and they’d probably want to put me on a syringe drive with Oramorph and Midazolam and Betamethasone and everything else and I know that is the beginning of the end once you start on the syringe driver and everything because it just puts you to sleep and just makes you comfortable and you don’t really have no quality of life’ .

Patients and carers valued being able to get in contact with someone when difficulties arose. Kathleen (carer): ‘Ease of communication is important to us so it’s easy to get in touch with somebody’ .

For some people, at the earlier stages after referral to the palliative care team, the only support that they required was just telephone contact.

Kathleen (carer): ‘What we have at the moment is a phone number to call and another lady, a nurse who actually rings us probably about once a fortnight yeah to check if we have any anxieties, problems.’ .

Palliative care professionals had a key role in mediating communication between patients and carers and other services. Kathleen (carer):  ‘she said yes, do you think Harry would mind us contacting the GP you know and I said I’m sure he would, if I think it’s a good idea he’d go along with it so that’s what we did, she did, she contacted our GP which meant that we got a telephone appointment and something happened very quickly’ .

This extended to explaining the purpose and results of tests such as X-rays.

Stacey (carer): Yeah he went when he was admitted he went for an Xray and that was the hospice, it was (clinical nurse specialist) that had organised that. We didn’t really know what was happening in the hospital but we came home again and he didn’t really know why he’d had the Xray or anything.

So when he spoke to the nurse at (the hospice), she sort of went through it all with him and talked him through it and that was really informative and helpful

There was a feeling that communication was better in specialist palliative care compared to the general National Health Service (NHS).

Olivia (carer): ‘There is an awful lot to be learned from the NHS about liaising and communications they could learn an awful lot from the way that the palliative care is operating and running’.

The carer also became an advocate for the patient’s needs and relaying information about symptoms and concerns to the healthcare professionals which the patient may not have themselves. Andrew (patient): ‘ I mean she (partner) tells (hospice nurse) things that I don’t’ cos‘ I mean I sometimes bottle quite a few things up and don’t say nothing but (partner) notices these things and then she will tell (hospice nurse) about them’.

This was also seen during a research interview, where the patient was willing for the carer to ‘tell the story’ on their behalf.

Mary (carer): Sorry I’m doing all the talking.

Martin (patient): Well no you need to because I’m useless.

We identified that patients had unmet needs in communicating about their condition ‘ Yeah, erm, again it’s, people are very reticent to use the word cancer. So they balk at saying the word’ (Wendy, patient)  and symptom experience with family and friends other than their regular carer.

Wendy (patient): I don’t know where she’s (my sister) at in terms of knowing about my symptoms and about the treatment I’m having, well no I do tell her actually, it’s not that I don’t but she has very bad arthritis…so I don’t push that too much because I’m thinking she’s actually in as much pain as I might be.’

This lack of communication could come from a position of wishing to protect the feelings of family members:

Wendy (patient): ‘Oh it’s been very difficult with family. You don’t know how much you want to tell them and you don’t know how far down the line you are anyway. I think over the years, I’ve been protecting my family’ )

Sometimes there were other important conversations that had not been held with family members.

Martin (patient): ‘I suppose my point in bringing up was because they’re particularly good kids and they are particularly, although I wouldn’t like them to hear me say it but they are, very good’ .

The work of medicines management

Medicines management was a time consuming and complex task, even for carers who has a background working in healthcare.

Sandra (carer): ‘I’m having to ring back my fourth phone call today to see is it a week off or have they forgotten to give him it. The communication isn’t great and I kind of think you know I’m kind of used to the NHS I’m, I know to ring and that sort of thing but I do think, I think if someone isn’t, got a health background or that sort of background there’s a lot of left to guesswork’ .

Commonly, the responsibility of managing the medicines could be delegated to the carer due to the side effects of the medication on the patient’s memory. It was felt that the patient would not have been able to manage by themselves. Mary (carer): ‘ a lot of the medication has made him not so aware, maybe a little bit muddled at times and his memory’s not as good as it was….you know he does forget quite easily so I wouldn’t, I have to say I wouldn’t trust him with his medication at all.’.

Carers took responsibility for ensuring medications were taken on time. As previously reported, this carer viewed this a joint endeavour with the patient.

Patricia (carer): I wake (patient) at 9 o’clock and make sure that she has her Lansoprazole and that she has her 12 hourly Longtech tablet. I generally am doing everything and as I say, we put the injection in at lunchtime every day and at night I remind her, not that she doesn’t, she doesn’t really need reminding but at 9 o’clock, I say have you had your tablets?’ .

The carer (who did not have a healthcare background) had developed an understanding of complex concepts such as the different modes of metabolism of medication for pain.

Patricia (carer): ‘So she’s now on a different set of pain relief which, the morphine was better but not better for her. So the pain killing stuff that she’s on is processed through the liver rather than through the kidneys and the kidney function has stabilised.’ .

Impact of COVID-19

Interviewees were asked about whether COVID-19 had impacted upon their experience. It seemed that for this selected group of patients and carers the impact was minimal.

Patricia (carer): ‘Can I just add that Covid seems to have, people have been complaining that this has stopped and that’s stopped whereas with Wendy her appointments, they’ve always wanted face to face and we’ve done phone appointments when it’s been appropriate and the care has been absolutely marvelous’.

Availably of hospice staff sometimes filled the gap in other services.

Kathleen (carer): ‘Because of lockdown and the virus and everything obviously all that (GP support) changed and you did start to feel a bit isolated and alone ‘cos you don’t always want to have to get in the car and drive to (hospital) for something if it’s not absolutely necessary and so therefore having someone else to talk to who knew more about things because obviously we’re learning as we go along Harry and I, it was very helpful’.

Problems were attributed to the general NHS system rather than being COVID-19 specific.

Sandra (carer): ‘I think as far as forthcoming information, I don’t think Covid has any bearing on that to be honest. You know, it just, I think it’s just an age-old problem in the NHS is communication.’ .

The close alignment of this patient and carer data with our HCP-based conceptual model provides additional reinforcement of the importance of multidisciplinary working and continuity of care in shaping symptom management experience. Indeed, the ability to see preferred member of general practices staff was recently reported as a factor associated with satisfaction with ends of life care in England [ 3 ].

Palliative care takes a holistic view of the patient and carer, the concerns of both being intertwined and interdependent. The observation that carers and patients viewed themselves as a single unit and talked about ‘we’ when describing the experience of symptoms and service referral, aligns with the dimension of the carer ‘living in the patients world’ and living in ‘symbiosis’ recently described by Borelli et al [ 4 ] and in earlier qualitative work with advanced cancer patients [ 5 ]. Carer opinion can be a close but not always perfect proxy of patient voice, even in this small sample we observed some discordance between patient and carer perception of symptom burden. However, carers were vitally important for communication with healthcare providers, relaying concerns, managing medication and generally advocating for the patient when they were unable or willing to do so. In the UK in 2022, the number of people living alone was 8.3 million. Since 2020, the number of people over 65 years old living alone has also increased [ 6 ]. Household composition is not a general indicator of wider social support networks, but these data do suggest that there could be a considerable number of people with palliative care needs without live-in carer support. This raises the questions of whether the experience of those living without a supportive carer can be equitable and how services might better facilitate this.

Home-based palliative care is thought to reduce symptom burden for patients with cancer [ 7 ]. To enable this, it is therefore vital that carers are adequately supported. Carer burden is a multifaceted experience, however our interview schedule specifically asked about symptom management experience. In agreement with the term ‘role strain’ in the review by Choi and Seo [ 8 ] we saw carers involvement in symptom management and in mediating communication between the patient and healthcare providers. Additional aspects reported by Choi et Seo include physical symptoms of the carer, psychological distress, impaired social relationships, spiritual distress, financial crisis, disruption of daily life and uncertainty [ 8 ] and these will not have all been probed by our interview topic guide.

Although in our original study HCPs talked about medicines from their perspective, the role of the carer was not discussed. Medicines management was an important way that carers facilitated effective symptom management but is a complex task. One carer commented: ‘I have to say that would be a nightmare if I wasn’t a nurse by background’ . Our data on the difficulties with medicine management are not novel and closely mirror the report of Pollock et al., [ 9 ]. Our findings echo and support their conclusions that managing medicine at home during end-of-life care could be improved by reducing the work of medicines management and improving co-ordination and communication in health care and we echo their calls for further research in the area.

We identified that patients and carers viewed mediating communication as an important role for healthcare professionals. This could be enabling communication between patients and carers and other healthcare professionals, for example arranging follow-up care or explaining information received. There was also a need for better communication between patients and their family members. As reviewed and synthesised by Murray et al., (2014) the importance of effective communication in palliative care has been long recognised [ 10 ]. In our study, an opportunity for HCPs to facilitate better communication about symptom experience between patients and their wider family was identified. Our previous survey of English hospices found that healthcare professionals, particularly nurses and allied health professionals felt that they needed more training in basic and advanced communication skills [ 11 ]. Having relevant experience and if the appropriate training was provided, staff may be well placed to support patients with developing an approach to these potentially difficult conversations. Participants were offered a choice of joint or individual interviews, but most chose to be interviewed as a dyad. It is possible that being interviewed as a pair may have altered the information disclosed. Although the aim was to discuss factors that impacted upon effective symptom management, discussions at times deviated to a more general appraisal of a participant’s experiences and all data collected may not be relevant to the research question.

When data was collected that lead to the development of the HCP-based model of effective symptom management (May to November 2019) a global pandemic was unforeseen. At the time of the patient and carer interview described here (October to December 2020), COVID-19 restrictions were in place in the UK. The patients and carers we interviewed were already receiving specialist palliative care support as outpatients. For these individuals it appeared that the impact of COVID-19 pandemic had had minimal impact on their care. The availability and reassurance of telephone support from hospice staff seemed in part to ameliorate the reduced support available from other services such as GPs. This contrasts sharply with the negative impact of COVID-19 on the experience of patients and carers in the more immediate end of life phase [ 12 ], receiving oncology care [ 13 ] or with cancer more generally [ 14 ]. Selection bias is likely as patients and carers with the capacity and willingness to participate in our research study possibly reflect those where the illness is in a more stable phase and immediate needs were being met. Indeed, participants talked about difficulties before referral to specialist palliative care and with other services but were overwhelmingly positive about the support currently being provided by the hospice.

Limitations

Due to the constraints of conducting a research study during the COVID-19 lockdown, more purposive sampling was not possible, this led to a lack of diversity in our sample. All participants identified themselves as of white British or white Scottish ethnicity which potentially means issues related to diverse ethnicities were not captured. All the patients who participated (and the non-participating patient whose carer was interviewed) lived with another person and had carer/family support. The experience of those managing their symptoms in isolation was therefore not captured. All participants were currently accessing support from a single hospice, the experience of those not yet receiving specialist support or receiving support from a different organisation may differ. The sample were diverse in age and included males and females, but all carers were female. Demographic information was not collected on socioeconomic background. COVID-19 restrictions necessitated the use of telephone interviews which may have lost subtle communications cues such as body language or conversely may have facilitated candid description. The transcripts do suggest that participants felt comfortable to tell their experience and they mostly spoke freely with limited prompting. One participant mentioned that he found it very difficult to leave the house, and therefore a telephone interview might have facilitated his inclusion. In some interviews more data was derived from the opinion of the carer than the patient, with the pair agreeing that the carer took responsibility for many tasks involved in managing the condition. We cannot be certain that carer interpretation accurately matches patient experience for all symptoms [ 15 ].

We set out to answer the question; does a healthcare professional data derived model represent the experience of patients and carers of people with advanced cancer? Overall, the answer was yes, as our healthcare professional based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Domains that did not align were those specifically related to professionals; experience (of staff), training (of staff), guidelines and evidence, psychological support (for staff) and the provision of formal psychological support (for patients), a resource patients and carers might be unaware of. Additional domains of carer burden, communication, medicine management and the impact of COVID-19 were identified. We make four recommendations arising from this research.

Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles.

Increased access to communication skills training for staff caring for palliative care patients and their families.

Review of patient communication needs with support provided where needed.

Further research into the symptom management experience of those living alone and exploration of how these people can be better supported.

Availability of data and materials

Original recordings generated and analysed during the current study are not publicly available due to protection of confidentiality. Anonymised transcripts with identifiable information removed may be available from the corresponding author on reasonable request.

Abbreviations

Coronavirus disease 2019

Healthcare professional

National Health Service

United Kingdom

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Acknowledgements

We are grateful to the patients and carers who in giving valuable time to share their experiences, made this research possible. We thank research nurses Kath Black and Angela Wray for their support with recruitment.

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was supported by Yorkshire Cancer Research programme grant L412, RESOLVE: “Improving health status and symptom experience for people living with advanced cancer”. The sponsor had no role in study design or the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.

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Emma J. Chapman, Carole A. Paley & Lucy E. Ziegler

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Original idea, EC and SP; Data collection, EC; Data Analysis, EC and CP; Data interpretation, All, Methodological oversight, SP and LZ; writing the manuscript, All. All authors contributed to the development of the updated conceptual model and approved the final submission.

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Correspondence to Emma J. Chapman .

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Chapman, E.J., Paley, C.A., Pini, S. et al. Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study. BMC Palliat Care 23 , 208 (2024). https://doi.org/10.1186/s12904-024-01544-x

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Family member and service provider experiences and perspectives of a digital surveillance and service navigation approach in multicultural context: a qualitative study in identifying the barriers and enablers to Watch Me Grow-Electronic (WMG-E) program with a culturally diverse community

• Karlen R. Barr 1 , 2 ,
• Patrick Hawker 2 ,
• Teresa Winata 2 , 3 , 4 ,
• Si Wang 5 ,
• Melissa Smead 6 ,
• Hilda Ignatius 7 ,
• Jane Kohlhoff 2 , 8 ,
• Virginia Schmied 9 ,
• Bin Jalaludin 7 , 10 ,
• Kenny Lawson 11 ,
• Siaw-Teng Liaw 12 , 13 ,
• Raghu Lingam 13 ,
• Andrew Page 14 ,
• Christa Lam-Cassettari 1 , 2 ,
• Katherine Boydell 2 , 15 ,
• Ping-I Lin 1 , 2 ,
• Ilan Katz 16 ,
• Ann Dadich 11 ,
• Shanti Raman 7 ,
• Rebekah Grace 17 ,
• Aunty Kerrie Doyle 14 ,
• Tom McClean 18 ,
• Blaise Di Mento 2 ,
• John Preddy 6 , 19 ,
• Susan Woolfenden 20 , 21 ,
• Valsamma Eapen 1 , 2 , 3 &

the Watch Me Grow-Electronic (WMG-E) study group

BMC Health Services Research volume  24 , Article number:  978 ( 2024 ) Cite this article

Metrics details

Children and families from priority populations experienced significant psychosocial and mental health issues to the COVID-19 pandemic. Yet they also faced significant barriers to service access, particularly families from culturally and linguistically diverse (CALD) backgrounds. With most child and family health nurse clinics ceasing in-person consultations due to the pandemic, many children missed out on health and developmental checks. The aim of this study was to investigate the perspectives and experiences of family members and service providers from an urban, CALD community regarding the implementation of a digital, developmental surveillance, Watch Me Grow-Electronic (WMG-E) program.

Semi-structured interviews were conducted with 17 family members, service navigators, and service providers in a multicultural community in South Western Sydney, Australia. This qualitative study is an implementation evaluation which formed as part of a larger, two-site, randomised controlled trial of the WMG-E program. A reflexive thematic analysis approach, using inductive coding, was adopted to analyse the data.

Participants highlighted the comprehensive and personalised support offered by existing child and family health services. The WMG-E was deemed beneficial because the weblink was easy and quick to use and it enabled access to a service navigator who support family access to relevant services. However, the WMG-E was problematic because of technology or language barriers, and it did not facilitate immediate clinician involvement when families completed the weblink.

Conclusions

Families and service providers in this qualitative study found that using WMG-E empowered parents and caregivers to access developmental screening and learn more about their child’s development and engage with relevant services. This beds down a new and innovative solution to the current service delivery gap and create mechanisms that can engage families currently not accessing services, and increases knowledge around navigating the health and social care services. Notwithstanding the issues that were raised by families and service providers, which include accessibility challenges for CALD communities, absence of clinical oversight during screening, and narrow scope of engagement with available services being offered, it is worth noting that improvements regarding these implementation factors must be considered and addressed in order to have longevity and sustainability of the program.

Trial registration.

The study is part of a large randomised controlled trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.

Peer Review reports

People from culturally and linguistically diverse (CALD) backgrounds in Australia are known to experience multiple social disadvantages and face challenges in health and health care needs [ 1 ]. Previous reviews on access to health services among CALD populations have focused on specific health issues [ 2 , 3 , 4 ]. However, there is a dearth of evidence available on child and family health service-related problems in CALD populations. Recent research and government policies have increasingly focused on early intervention for child developmental delays in the general population [ 5 , 6 , 7 ]. It is understood that children who do not access early developmental screening are at-risk for delays in early identification of developmental issues and delayed access to appropriate interventions, leading to future difficulties [ 8 ]. For instance, one in five Australian children starting school do not have the developmental skills necessary to thrive [ 9 ]. In Australia, each state and territory has its own processes around developmental surveillance; in most cases, this involves developmental screening completed by Child and Family Health Nurses at 6, 12, 24, 36, and 48 months. While there are state and federal developmental surveillance models (see Table 1 ), the uptake is variable, especially for children from CALD backgrounds. These children are at higher developmental risk, but the developmental concerns/delays go unidentified until the start of school in many instances. This impact was further increased by the COVID-19 pandemic effect (e.g. service closures and resource constraints), thereby missing out on early screening and intervention opportunities [ 10 ].

Children from CALD or socioeconomically disadvantaged communities have an increased risk of developmental challenges [ 12 , 13 ]. According to the ‘inverse care law,’ children from socio-economically disadvantaged and CALD backgrounds and who are most at-risk for developmental delays are less likely and less able to access preventative care services, such as developmental surveillance programs [ 14 , 15 ]. While such programs aim to promote child health and development, and to facilitate early detection and intervention, including growth monitoring, physical health, developmental surveillance, and health promotion, data have suggested that uptake of these programs has been low [ 11 ]. In a study involving a 2000-strong cohort in South Western Sydney [ 16 ], for example, it was found that while up to 30% of children are at developmental risk by their 18-month ‘well-child’ check, only 30–50% of these children attending primary healthcare have their developmental surveillance record completed [ 17 , 18 , 19 ]. Another study [ 20 ] highlighted the need for practice and policy changes including training of general practitioners in developmental surveillance, as well as allocation of time and financial remuneration for developmental checks in primary care [ 1 ]. Qualitative findings from previous research have demonstrated enabling factors such as proximity, continuity of care, opportunistic contacts, integrated/connected engagement between services, as well as parental and service provider language and cultural concordance [ 21 , 22 , 23 ].

Accessing services might be particularly difficult for CALD families due to their cultural beliefs, language barriers, poor health literacy and awareness of services, and the complex nature of child and family health services [ 14 , 21 , 23 , 24 ]. The COVID-19 pandemic might have exacerbated difficulties with service access for CALD families [ 25 ]. These accessibility challenges for families from CALD backgrounds extend to telehealth or online services due to few adaptations and translations [ 26 ]. While the use of web-based applications can increase health screening uptake, more needs to be understood about real-world implementation [ 27 ].

Increasingly, family member perspectives are being included during the evaluation of health initiatives [ 21 , 23 , 28 ]. Qualitative research that focuses on in-depth description and personal experience stories and gathers the perspectives of family members and service providers on developmental surveillance and service access is important to provide insights around what works and how developmental surveillance monitoring can be improved.

Research aims

As part of the entire implementation research trial, the aim of this study is therefore to qualitatively evaluate the engagement with developmental surveillance, services access to child and family health, and uptake of service recommendations by identifying the barriers and enablers of our digital developmental surveillance program, WMG-E, according to our CALD family members, service navigators and service providers. Specifically, we focused on perspectives regarding the developmental surveillance program and the service navigator role in a multicultural community.

To address our research aims of this qualitative study, we formulated the following research questions:

What are the perceived barriers and enablers to family engagement in relation to the current Child and Family Health Services model in a CALD/multicultural community, as reported by family members, service navigators, and service providers?

How does the implementation of the WMG-E digital surveillance (weblink) impact access to child and family health services, and what are the key factors influencing the uptake of service recommendations among multicultural families, according to the perspectives of family members, service navigators, and service providers?

What roles do service navigators play in facilitating engagement with the WMG-E program and improving service access and uptake of recommendations, and what challenges and strategies do they encounter in a multicultural community context?

Study context

This qualitative study was part of a randomised control trial (RCT) to evaluate our health services implementation research trial – the Watch Me Grow-Electronic (WMG-E) digital surveillance approach and a service navigation component during the COVID-19 pandemic [ 29 ]. This RCT occurred in two sites – Murrumbidgee, New South Wales, and South Western Sydney (SWS), New South Wales, Australia. The WMG-E program includes a digital weblink whereby families are screened for developmental issues, parental mental health problems, and psychosocial concerns. Following completion of this screener, families were randomised into a treatment group where they were supported by a service navigator or a usual care control group.

Our research team has decided to report our findings separately by site, as there are distinct implications and needs being put forward and addressed by the questions and responses relevant to each site contexts – for instance, certain language and cultural factors may be more common to the urban, multicultural site; hence, issues and enablers around these factors must be addressed and discussed further into their health and social care system specific to CALD populations; whereas workforce and demand in resources covering the large geographical areas of the rural/remote site may be put to light and therefore need more investigations and discussions.

The program: Watch Me Grow-Electronic (WMG-E)

The Watch Me Grow-Electronic (WMG-E) is an innovative digital surveillance solution which comprised of a pragmatic, implementation trial that was piloted in two distinct populations (urban multicultural and rural/regional sites) using opportunistic service contacts within the community with automated reminders for ongoing monitoring [ 29 ]. Specifically, the WMG-E platform is a digital application in the form of a weblink, developed to help services reach vulnerable families, including those in CALD communities [ 26 , 29 ]. WMG-E assesses child development, as well as family psychosocial and parental mental health needs, and is available in four languages, including English, Mandarin, Vietnamese and Arabic. WMG-E includes the Learn the Signs Act Early (LTSAE) tool, developed by the Centers for Disease Control and Prevention (CDC), to provide age-based developmental checks for children from birth to age five years [ 30 ]. Parents are encouraged to actively participate in their child’s developmental screening through WMG-E, using opportunistic service contacts, such as routine health contacts or via a link that a trusted service provider issues to families at home and in the community. Once engaged, at the next recommended ages when developmental checks are due, automated reminder emails or mobile text messages are sent to parents to ensure ongoing monitoring. If developmental concerns are raised, parents are informed and assisted to seek further assessment by health professionals.

In addition to WMG-E, service navigators are incorporated as part of the roll-out intervention to assist families to navigate and access services [ 30 , 31 ]. Service navigators are trained to use their knowledge of health, mental health, and social care services, as well as the professionals in the community to help families before, during, and after service use. Service navigators consider a family’s individual needs and facilitate a connection between families and relevant services [ 32 ]. When needs were identified, service navigators supported families on a case-by-case basis to link them with the relevant services and resources, as required. The service navigator builds working relationships, solves problems, and supports families while the families learn to self-navigate the health system. The introduction of service navigators within health systems is relatively new in Australia [ 33 , 34 , 35 ], and research is required to understand family experiences with service navigators.

Participants in this qualitative study

The participants involved in this qualitative study were recruited from our major WMG-E trial cohort that make up the CALD urban community/population in South Western Sydney, New South Wales, with approximately 80% of households primarily communicating in a language other than English [ 36 ]. Convenience sampling was used to invite family members to participate, whereby a quarter of multicultural family members ( n  = 14 out of a total of 66 multicultural families in SWS) who participated in the larger RCT were invited to participate in an interview. Similarly, service provider participants were recruited using convenience sampling from the WMG-E trial; whereby they were then invited to participate in this interview study, alongside service navigators who were involved in the project. Information about this qualitative research and an invitation to participate was sent to potential participants via email or text message. Overall, our participants included ten family members, five service providers and two service navigators ( n  = 17) that participated in this interview study.

Characteristics of participants involved in this qualitative study

Ninety percent of the family member participants were females; with 40% aged 36 to 40 and the remaining equally distributed in the age groups 31 to 35 and 26 to 30. All participants had attained education to the level of high school (40%) or above, with 30% having a bachelor and 20% a post graduate degree and 10% a Graduate Diploma. Forty percent were of Asian background, 20% Australian and the rest were from Middle Eastern and Pacific backgrounds. English was the most commonly spoken language at home (60%) followed by Vietnamese (20%). Service provider participants were all females with 60% from NGO and the remaining from Government organisations (40%). Sixty percent were in Management and the rest in Allied Health roles. Service navigators were all females.

Interview recruitment and procedures

This study was approved by the South Western Sydney Local Health District Human Research Ethics Committee (HREC reference 2020/ETH01418), and all participants provided written informed consent. All interviews were conducted online with participants.

Semi-structured interviews were conducted by two researchers, one person within and one external to the research (TW and HI), guided by an interview guide (see Supplementary File-Appendix 1). Family members were presented with five questions about their experiences of attending child and family health services, the impacts of COVID-19 on their appointments with child and family health services, and experiences with the WMG-E platform. Family members that were part of the intervention group answered an additional two questions based on their experience with the service navigator. Service providers and service navigators were asked ten questions on their experiences of providing developmental checks, their involvement in the WMG-E program, the benefits of or limitations with the WMG-E weblink, and their perceptions of the WMG-E weblink for developmental checks and the service navigator. Interview duration ranged between twenty and sixty minutes. The interviews were audio-recorded, transcribed verbatim, and identifying information was removed. Consumer participants were provided with a gift voucher in lieu of their time for participation.

Data analysis

All interviews were transcribed by professional transcription services and coded using NVivo12 [ 37 ]. In utilising an reflexive thematic analysis underpinned by grounded theory [ 38 ], the research team has followed a rigorous, systematic six-step qualitative analytical process based on Braun and Clarke [ 39 ]’s thematic analysis (as according to Fig. 1 ) that leads to the development of a conceptual model in order to triangulate all collected data by cross-checking and agreeing/disagreeing on the themes and subthemes that have emerged from the qualitative interviews [ 39 ]. To do this, transcribed interviews were initially coded by two qualitative researchers (KRB, PH). As these researchers were also members of the study team, a randomly selected set of interview transcripts were also selected and coded by an external reviewer (HI) and themes were compared. Any disagreements were resolved through discussions until consensus was reached on themes and subthemes. This system of coding provided an opportunity for identifying a consensus based themes and subthemes of individual experiences and perceptions regarding the feasibility of participating and utilising our digital screening, monitoring and navigation program through WMG-E [ 40 ]. Thematic analysis was undertaken to develop key themes/subthemes relating to parental/caregivers and service providers/navigators’ experiences and perceptions; which was done by inductive coding, [ 38 , 39 ] allowing data to be organized and used to explore connections between data elements and to develop conceptual items. Once coded, segments of data were then linked in a formal fashion to allow themes to emerge and to determine relationships between different data sets. Data saturation had been reached with the current interview sample size through a strict procedure of pilot interview analysis over multiple iterations/discussions between research members. The study has been reported in line with the Standards for Reporting Qualitative Research (see Supplementary File Table 2) [ 41 ].

A systematic thematic analysis process: A novel six-step process for conceptual model development in qualitative research [ 42 ]

The qualitative findings were separated into four themes: enablers and barriers of the current Child and Family Health Services model, enablers and barriers of the WMG-E weblink, enablers and barriers of Service Navigator implementation and suggested improvements for the Service Navigator role. To address our research questions in this qualitative study, we have explicitly connected our identified themes and subthemes (alongside supporting quotes) under each of the relevant research questions to enhance clarity and clearer structural flow/presentation of our participant data. A summary of themes and whether the themes were supported by service provider, service navigator or family member perspectives is illustrated in Fig. 2 .

Summary of barriers, enablers, and suggested improvements from parent/caregiver as well as service providers/professionals’ perspectives around the current Child and Family Health Service (at the time), participation in the WMG-E weblink, and the Service Navigator program. Notes: Yellow = perspectives from family members, service providers and service navigators; Blue = perspectives from family members only; Green = perspectives from service providers and service navigators. WMG-E, Watch Me Grow-Electronic

Research Question 1: What are the perceived barriers and enablers to family engagement in relation to the current child and family health services model in a CALD/multicultural community, as reported by family members, service navigators, and service providers?

Theme 1.0: Enablers and barriers of the current child and family health services model

Holistic, comprehensive and personalised support.

Participants described how identifying the families’ needs related to child and family health helps the relevant service provider or navigator to enable the families to navigate the intricate service system:

“What we know is that the service system is quite complex and families don’t often know how to get the right service for their families, so our practitioners are very skilled in knowing what the right service would be for families” (service provider SP02).

Service providers discussed how an in-depth evaluation of each family’s needs is conducted, allowing for individualised support:

“When we get a referral for a family, we talk to them and complete an assessment about the individual needs, what supports they want and what goals they have for their families” (service provider SP02).

Participants described how services provide interim case work to support families during the linkage process to long-term community services:

“The program is able to meet the needs of most referrals because we either meet that immediate need or we are able to support them whilst they are waiting for that ongoing management” (service provider SP05).

Beyond family engagement, the social care service provider supports families to access services for education, health, skill development programs, and other community services in the area:

“We provide support to services around skill development, but we can also provide community development” (service provider SP02).

Service providers discussed a swift adaptation to remote working conditions, expansion of usual criteria, and adoption of new support services in order to mitigate unprecedented challenges posed by COVID-19.

Participants described how child and family health services provide assessment of child’s social and emotional health and parental psychosocial health while also facilitating connection with community support services:

“If we are finished care at our end, we would discharge and refer them to other services particularly within the tertiary services” (service provider SP03).

Restricted by availability of local support services and limited cultural understanding

Some participants discussed the difficulty of accessing services in their area and how it was important for migrant families to be connected with information and services early in their child’s development:

“I think they should be given a more clearer picture of how do we have to be because this was my first child in Australia, so it was hard for me to figure out where am I supposed to go?” (family member FA34).

One participant shared how a clinician did not understand her culture and emphasised the importance for service providers to have cultural sensitivity so that families could build a relationship with them:

“I like the [clinician] in [location] because they are [multicultural] like me, so very friendly talk... I think because of the people, because you know how this kind of relationship is important, especially new mum and also first baby” (family member FA43).

COVID-19 restrictions and lockdowns impact on services

The largest obstacle encountered during the study was closures of clinics due to lockdowns and restrictions emplaced by the COVID-19 pandemic effect. To echo this, participants discussed prioritisation of telehealth services with substantial limitations to face-to-face services:

“The majority of our service was switched to telehealth. We were very limited in the amount of face-to-face visits that we were allowed to attend… there had to be significant clinical risk for that home visit to be attended” (service provider SP04).

A few service providers shared how the COVID-19 pandemic saw an increased demand for child and family health services:

“We ended up getting 60 or 70 referrals a week, which is double what we would normally get” (service provider SP02).

Increases in child behavioural issues and maternal mental health concerns were also described as a result of COVID-19:

“There was definitely an increase in behavioural issues with preschoolers particularly” (service provider SP03).

Research Question 2: How does the implementation of the WMG-E digital surveillance (weblink) impact access to child and family health services, and what are the key factors influencing the uptake of service recommendations among multicultural families, according to the perspectives of family members, service navigators, and service providers?

Theme 2.0: Enablers and barriers of the WMG-E weblink

User-friendly experience.

Most family members reported that the weblink was straightforward and easy to use:

“To use [the weblink] it was really easy and convenient” (family member FA08).

Many family members reported that the survey took a short amount of time to complete:

“A very short amount of time. I can’t tell you exactly, but it was less than 10 minutes” (family member FA16).

Some family members commented that the weblink provided an easy way to track their child’s development:

“It’s really great because it will be easier for us to maybe track information and keep … everything about how to progress with the child’s health” (family member FA34).

Provides accessible developmental monitoring

Some participants shared how having a digital tool was helpful as it allowed parents to take initiative and could be completed by parents who had limited time:

“Everyone has smartphones and it's the best way to engage with people... People are working more too and back to work earlier. They've got so many commitments, so yeah, just having that access via the phone is so much better” (service navigator 1).

The weblink was described as increasing accessibility of services by providing multiple referral pathways and the option for self-referral:

“Having many referral pathways and options is always great” (service provider SP05).

The digital platform offered developmental screening in an accessible manner, filling gaps in traditional healthcare assessment services:

“There is a huge gap in families being able to access developmental checks through the developmental checks at community level at primary level so I see this is definitely a facilitator I would be able to help that process” (service provider SP03).

The weblink also offered anonymity, which might be comforting to some parents:

“One of the benefits of using the weblink is having something that’s in the digital age that parents can quickly go onto. It’s a little bit anonymous” (service provider SP03).

The weblink was described as aligning with technological advances in society, which could optimise health services:

“Families want to utilise technology… sometimes it’s the rigidity of our systems that prevent these things likes apps and technology from us actually utilising them to their best” (service provider SP04).

Comprehensive support and utility as a parenting/educational resource

Many participants commented that the weblink provided families with information and education about their child’s development and anticipatory guidance about normative developmental milestones:

“I guess another benefit is that it does add an extra level of education to parents that even if they are not potentially noticing red flags or the need to access further care they are getting education on what their child should be doing so I do know that it does provide normative developmental milestones which is fantastic, and it’s definitely a good resource to families” (service provider SP03).

Several participants mentioned that the weblink provided families with information that their child’s development was on track which reassured them:

“If you do that screen and then you know that oh, your kid is not late or something…It is just a normal kid, like the other kids… So that way you know that you can feel rest assured” (family member FA02).

Difficulties with accessibility

Some participants discussed how a limitation to the weblink was that it could not be accessed by parents who spoke certain languages as WMG-E was available only in four most commonly used languages for the area. Participants commented that many parents might not know about the weblink and recommended increasing advertising and communication about the weblink, such as through GP clinics:

“Potentially some families are still not aware of [the weblink], and it's something that we could improve on” (service provider SP03).

Some participants described how technology issues might hinder weblink use, including the slow loading time on the weblink, not having a mobile telephone, or not having access to the internet:

“Not everyone is able to do things online” (family member FA31).

In these cases, the service provider who introduced the family to the weblink might support them to complete it. The extended waiting periods for services might also deter families from following through with the self-referral process:

“There's still the problem that they might self-refer but there’s, for more specialised services such as allied health, an extensive waiting list” (service provider SP04).

Another barrier to accessing the weblink was the exclusion criteria, such as the age of the child in this specific project as six months to three years:

“Maybe broaden the program for [children] a little bit older” (family member FA60).

Absence of immediate clinician involvement during developmental screening

Some service providers and service navigators had concerns that the absence of immediate professional oversight in the weblink might contribute parent misunderstanding and anxiety about children’s developmental stages. This was especially among parents with limited knowledge of child development:

“I think without a clinician’s clinical judgement at that time potentially some parents could perceive that information incorrectly or it could cause a little bit of anxiety in parents” (service provider SP03).

Some service providers and navigators commented that digital feedback might not be appropriate when risk is involved, such as domestic violence or mental health problems:

“The last lady that had domestic violence [DV], she would've got that report straightaway emailed to her. And my concern was when she didn't answer me, is that wherever the DV was coming from, they may have seen that” (service navigator 1).

Some service providers and navigators mentioned items on the survey that could be improved or that parents did not understand what a certain question was asking:

“I find out the most problem is that parents have different understanding of the questionnaire... One week ago, another mum there's item in 12 months check said can your, can your child speak mama or dad? So the child can speak mother and da, but cannot speak the full mum and dad. And the mum called me and said could you help me to pick an appointment with a speech pathologist? Because my daughter cannot speak” (service navigator 2).

Research Question 3: What roles do service navigators play in facilitating engagement with the WMG-E program and improving service access and uptake of recommendations, and what challenges and strategies do they encounter in a multicultural community context?

Theme 3.0: Enablers and barriers of Service Navigator implementation

Enhances uptake of family support services.

Several participants described the helpfulness of the resources and service information provided by the service navigator:

“[Service navigation] actually helps families get connected to what needs to be connected to, whether it’s within the community or whether it is getting help for a mum or for things that you help with your family” (family member FA08).

The service navigator was described as playing a critical role in facilitating help-seeking, particularly for people who might not usually seek assistance:

“Not everybody knows the service system or how to access support, so I think that if there’s a tool that’s able to guide them to where they need to go, then absolutely I think that it’s beneficial and have a place and help families that ideally would not always seek assistance” (service provider SP02).

Participants discussed how the service navigator simplifies the dense and rapidly changing landscape of services by serving as a central point of contact:

“I think always when services or families have one point of contact, it becomes far easier and far less overwhelming for them to navigate a service system” (service provider SP02).

Support provided by service navigators, including regular check-ins and connecting families to services, was beneficial to families:

“She just kind of like explained what the services that were available and some information about the services that …and she was quite helpful with offering services and trying to help me see what could assist me in my situation” (family member FA60).

Participants’ narrow scope of engagement with offered services

In some cases, families interacted with services primarily for financial assistance despite referral for a diverse set of needs:

“Only two families which both of them only contacted us to get some financial support; other than that they did not engage in other services like I tried to do an assessment with them to try and explore more of further issues but they did never engage” (service provider SP01).

Service providers and navigators shared how multicultural families are sometimes slow to warm up to and trust the service navigators, which can be frustrating for service navigators:

“They are migrants or they cannot speak English. Well of course they are not quite familiar with the local community services. And another thing is that it's really hard to engage them in the first few rounds” (service navigator 1).

Once a relationship was established, families wanted to engage and receive support from service navigator.

Theme 4.0: Suggested improvements for the service navigator role

Importance of providing accurate information about services.

There was a risk that family expectations might differ to what services could provide and when the services could be provided. This was partly due to miscommunication between service navigators and services:

“I am still waiting a hearing test because [my son] was referred for a hearing test” (family member FA08).

One service provider recommended that service navigators need to have a thorough understanding of all the relevant services to reduce miscommunication:

“Having a good understanding of what services provide. I guess meeting expectations… If information about our service is given by a third party, such as a service navigator, sometimes there can be a miscommunication” (service provider SP04).

Importance of clarifying the service navigator role

Service providers and service navigators discussed how service navigators need to be clear with families about their role, particularly that the role did not include the provision of clinical advice:

“When I first got connected with the family, I told them I'm not a clinical professional… I'm here to provide service linkage. So I'm not a clinical background because some mums just use me as a clinician” (service navigator 2).

Service navigators might also need to specify how long they can support families so that families do not always depend on them, and that they can support other families:

“Maybe [the service navigator] needs to say, okay, we're with you for this period of time. This is what I'm going to do, and this is what you need to do. And that's it. Make them take a bit of responsibility” (service navigator 1).

Service providers suggested that services have a single individual designated to the service navigator role:

“If her role is only focused on service navigation, I think the intervention will even be more successful” (service navigator 2).

Service providers discussed how service navigators might not have capacity to support many families at one time. Some service providers and navigators did not think it was feasible to have a service navigator at all sites and recommended focussing on the vulnerable populations:

“I don’t think that [service navigation is] always necessary... you don’t want to capture a bunch of people that actually don’t need it and they’re quite resilient. So I would kind of be capturing a very small percentage of people that you identify as having a potential underlying vulnerability” (service provider SP02).

One service navigator suggested there could be different service navigator models depending on the needs of families:

“We need to set up a different service navigation model for different types of participants in different local health communities based on the previous experience to save the time and also to set up the expectation and to release the pressure of the service navigator” (service navigator 2).

The current study interviewed family members, service providers and service navigators to understand the enablers and barriers to implementing a WMG-E weblink alongside a service navigator in a multicultural community. Findings showed that the WMG-E weblink was perceived by families as easy to use, accessible by many families, and provided information to families regarding their child’s development. The service navigator role was highlighted as helpful in connecting families to appropriate services. Service providers appreciated the anticipatory guidance and awareness and information provided to families by the WMG-E platform. Specifically for the CALD community the language translations available on the weblink was regarded as particularly useful. This is consistent with previous findings about the need for language congruence when supporting families for completing developmental checks [ 21 ]. Barriers included that the weblink could not be accessed by some families, due to technology access issues. In the intervention group, this was overcome by the service provider who was introducing the family to the WMG-E link supporting families to complete the checks using the WMG-E. By utilising the service providers who are trusted and families are already engaged with, would be helpful in this regard. Other limitations to accessing the weblink included not having clinical oversight while families are completing the weblink at their homes or in the community and thereby families possibly misinterpreting the results or recommendations. However, it is to be noted that this may have been a unique issue during COVID-19 when services were closed. Also, the availability of Child and Family Hubs as a place-based ‘one-stop shop’ service that families can access and service navigators can refer to would be helpful in this regard [ 43 ].

The family members in this study highlighted that WMG-E is user-friendly, straightforward and quick to use. This contrasts with research showing that digital literacy is often poor and internet access is limited in CALD populations [ 44 ]. However, experience with mobile telephones facilitates digital literacy, suggesting that the family members who participated in this research may have been familiar with mobile phone use [ 44 ]. The simple questionnaire structure of the weblink may also have facilitated ease of use. For families with language issues, translations are available – but when low literacy or technological issues prevail, a trusted service provider could help a family to complete the weblink. This should form an important consideration during implementation as the families that WMG-E seeks to support often experiencing socioeconomic disadvantage and might not have the means to purchase technology. Future studies could investigate how families without access to technology could be involved in WMG-E, such as having an electronic device available to families when attending an in-person service. Further, language barriers were described by participants as another issue that requires attention. WMG-E was made available in four languages commonly used in the community where this study was conducted, and it is important to make provisions for those who speak languages other than the ones where translation was available.

According to the participating service providers and navigators, the WMG-E was limited by the absence of immediate clinician input when families completed the weblink, reflecting previous research [ 21 , 22 , 23 , 45 ]. However, this may have been due to the COVID-19 related service closure when this study was conducted. The WMG-E weblink is intended to be completed by families in collaboration with a service provider the family trusts. Findings from this study highlighted the importance of implementing the WMG-E program with clinical follow-up and support when needs are identified, rather than completing the weblink in isolation. Service providers and navigators described limitations when electronic feedback is provided to families when risk is involved, and how families may become anxious if they do not understand the feedback. The therapeutic aspect of a clinician providing feedback to a family might be missed via electronic feedback [ 46 ]. Validity might also be an issue when families use a digital screening tool compared with a face-to-face assessment with a clinician [ 47 ]. Regarding risk, it is important for a protocol to be used when a family member has a positive screen for issues including mental health problems or domestic violence. For instance, contact information for domestic violence organisations should be made available to families where relevant, or a clinician could be alerted to the risk and an in-person appointment be organised, as recommended for other online interventions [ 48 ].

In this study, participants who are in the treatment group described the importance of the service navigator in directing families to services tailored to their needs on a continuous basis, reflecting previous research [ 30 ]. CALD populations may experience use of technology alone as impersonal [ 44 ]. A service navigator might provide the additional personal interaction needed to promote service uptake. Additionally, a service navigator might aid CALD families with low health literacy or communication difficulties by providing clear information about services that are available for their specific needs [ 1 , 49 ]. Service providers highlighted the importance of making the service navigator role clear to manage families’ expectations, such as how long the service navigator might be able to support them. This might be particularly important for CALD communities as their expectations of services and health professionals may be unmet due to their previous experiences in their home countries [ 50 ]. In addition, service providers discussed how some families did not contact services that the service navigator recommended and focused on financial resources. This might be explained by the socioeconomic disadvantage experienced by families in this study [ 14 ]. It is possible that they focussed on meeting basic needs with limited capacity to address other needs, such as child developmental concerns or their own mental health challenges. The COVID-19 pandemic might have also reduced families’ capacity to access services [ 51 ]. More research is needed to understand the enablers of an effective service navigator, such as the skills or characteristics they require to ‘fit’ with the families they work with. Interestingly, families did not comment on the cultural background of the service navigator, and it was unclear whether the service navigator had the same cultural background as families. However, one participant highlighted that family members in CALD communities prefer support from providers with the same cultural background, as has been highlighted in prior research [ 1 , 24 ]. While it might not be feasible to match clients’ and staff members’ cultural backgrounds, staff members should demonstrate cultural sensitivity. Further work is needed to increase the healthcare workforce with representation from CALD communities to provide culturally safe services to families from diverse communities and backgrounds [ 1 , 24 ].

In addition, participants highlighted how WMG-E has the potential and capacity to increase families’ understanding about their child’s development, consistent with research on other screening applications used in mental health [ 52 ]. WMG-E might be especially important to increase knowledge of developmental milestones in CALD communities where barriers to education or information might exist [ 21 , 23 ]. Future research is needed to ascertain the impact of WMG-E in increasing knowledge about child development in multicultural communities.

Although family members can experience confusion and frustration when engaging with child and family health services [ 53 ], the positive feedback obtained in this study might suggest that service navigators facilitated the navigation process for participants in this study. Participants also discussed how services adapted to the COVID-19 pandemic, but how there were increases in referrals and child behavioural problems due to COVID-19. This might have been particularly relevant for CALD families who might prefer face-to-face support and be less likely to engage with telehealth services [ 54 , 55 ].

Implications for health policy and practice

The use of digital screening is complemented by the service navigator’s role to intervene and act as quickly as possible to the individual circumstances and the specific child and family needs. Future policy should include service navigators as part of the public health workforce, specifically in child and family health, mental health and social care services so that CALD families in particular who have technology access issues or needing support for interpreting the results and recommendations could be supported. This will strengthen integrated care and continuity of care policy.

While the inclusion of service navigators is one important approach, future co-design work is required. The service navigator role needs to be relevant from a cultural and language perspective. Therefore, co-designing the WMG-E and service navigator program with the CALD community is important. For instance, future work needs to incorporate more languages than the four used in this study or employ service navigators of a certain cultural background who speak languages other than English.

This study also has implications for future research in public health measures to engage multicultural families in developmental checks. This could include increasing awareness among families and clinicians and other staff working in early childhood education and social service agencies about using opportunistic contacts that they have with families with preschool children about digital programs such as WMG-E so that it can be incorporated into their routine work.. Further, health literacy is required regarding the available health and social care services in the community, to leverage existing resources and to avoid duplication of services. Establishment of Child and Family Hubs as a one-stop-shop service for multicultural families will also be helpful so that engagement with services following referral and continuity of care can be ensured.

Strengths and Limitations

This study is novel in evaluating a new digital developmental surveillance program in addition to linkages and supports provided via a service navigator commensurate with the needs identified. A strength is the project’s inclusion of family members with various ethnic backgrounds and the use of a digital platform with translations available to cater for multicultural families. In addition, the study has many practical implications for CALD families, including the role of service navigators in supporting service access appropriate to their individual needs. Another strength is that this study reached data saturation in that new codes or themes were not emerging and new data repeated previous data [ 56 ].

The convenience sampling strategy of this project is a limitation because participants were not randomly selected and therefore might present a bias. Family member participants were overall highly educated, with 60% having more than high school education and 60% who were competent in English language. Therefore, these participants might not be representative of all CALD community members.

In the present study, family members, service navigators and service providers from a multicultural community provided their perspectives on the enablers and barriers to implementing WMG-E, a digital developmental screening and ongoing monitoring tool, alongside a service navigator to link families with the relevant services as per need. Findings showed that family members found WMG-E to be user-friendly and informative regarding child development. The findings also highlighted the critical next step of accessing relevant services for further assessment when parental concerns are identified regarding the developmental progress of the children. Service navigators were perceived positively as they connected families to services and increased service uptake, although families need close follow up to ensure uptake of recommendations and engagement with services offered to them. This study demonstrated that WMG-E with the addition of a service navigator may be an important approach to reach and engage multicultural families who would not have otherwise engaged with routine child and family health services and hence would have missed completing development checks for their children. Further support for those with complex psychosocial needs via Child and Family Hubs, where services are co-located and integrated, would enable them to access relevant early intervention and support services in one place.

Availability of data and materials

Data from the current study will not be made available, as participants did not consent for their transcripts to be publicly released. Extracts of participant responses have been made available within the manuscript. Please contact the corresponding author, Professor Valsamma Eapen, for any data requests.

Abbreviations

Culturally and linguistically diverse

Centers for Disease Control and Prevention

Domestic violence

Learn the Signs Act Early

Randomised control trial

Watch Me Grow – Electronic

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Acknowledgements

We would like to acknowledge the family members, service providers, and service navigators who participated in this study. We also would like to acknowledge and thank the entire WMG-E study group who have contributed towards the scope of the project: Valsamma Eapen, John Preddy, Susan Woolfenden, Teresa Winata, Si Wang, Melissa Smead, Jane Kohlhoff, Virginia Schmied, Bin Jalaludin, Kenny Lawson, Siaw-Teng Liaw, Raghu Lingam, Andrew Page, Christa Lam-Cassettari, Katherine Boydell, Daniel P. Lin, Ilan Katz, Ann Dadich, Shanti Raman, Rebecca Grace, Aunty Kerrie Doyle, Tom McClean, Blaise Di Mento, Sara Cibralic, Anthony Mendoza Diaz, Jodie Bruce, Nicole Myers, Joseph Descallar, Cathy Kaplun, Amit Arora, Victoria Blight, and Angela Wood.

This work underwent an independent peer review and was funded by the NSW Health COVID-19 Research Grants Round 2 in partnership with University of New South Wales, South Western Sydney Local Health District, Murrumbidgee Local Health District, NSW Health, Sydney Children’s Hospital Randwick, Western Sydney University, Ingham Institute for Applied Medical Research, Black Dog Institute, Uniting and Karitane. The funding body did not contribute to the design of the study or in writing of the manuscript.

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Contributions

KRB – data analysis and writing- original draft. PH – data analysis and writing- review and editing. TW – study design, participant recruitment, data collection, data analysis, and writing- review and editing. SW – participant recruitment, data collection and writing- review and editing. MS –participant recruitment, data collection and writing- review and editing. JK – study design and writing- review and editing.  JP – study design and writing- review and editing.  SW – study design, supervision and writing- review and editing.  VE – study design, supervision and writing- review and editing. All authors read and approved the final version of the manuscript.

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Barr, K.R., Hawker, P., Winata, T. et al. Family member and service provider experiences and perspectives of a digital surveillance and service navigation approach in multicultural context: a qualitative study in identifying the barriers and enablers to Watch Me Grow-Electronic (WMG-E) program with a culturally diverse community. BMC Health Serv Res 24 , 978 (2024). https://doi.org/10.1186/s12913-024-11397-y

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BMC Health Services Research

ISSN: 1472-6963

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• Published: 20 August 2024

“Because people don’t know what it is, they don’t really know it exists” : a qualitative study of postgraduate medical educators’ perceptions of dyscalculia

• Laura Josephine Cheetham 1  

BMC Medical Education volume  24 , Article number:  896 ( 2024 ) Cite this article

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Dyscalculia is defined as a specific learning difference or neurodiversity. Despite a move within postgraduate medical education (PGME) towards promoting inclusivity and addressing differential attainment, dyscalculia remains an unexplored area.

Using an interpretivist, constructivist, qualitative methodology, this scoping study explores PGME educators’ attitudes, understanding and perceived challenges of supporting doctors in training (DiT) with dyscalculia. Through purposive sampling, semi-structured interviews and reflexive thematic analysis, the stories of ten Wales-based PGME educators were explored.

Multiple themes emerged relating to lack of educator knowledge, experience and identification of learners with dyscalculia. Participants’ roles as educators and clinicians were inextricably linked, with PGME seen as deeply embedded in social interactions. Overall, a positive attitude towards doctors with dyscalculia underpinned the strongly DiT-centred approach to supporting learning, tempered by uncertainty over potential patient safety-related risks. Perceiving themselves as learners, educators saw the educator-learner relationship as a major learning route given the lack of dyscalculia training available, with experience leading to confidence.

Conclusions

Overall, educators perceived a need for greater dyscalculia awareness, understanding and knowledge, pre-emptive training and evidence-based, feasible guidance introduction. Although methodological limitations are inherent, this study constructs novel, detailed understanding from educators relating to dyscalculia in PGME, providing a basis for future research.

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Dyscalculia is categorised as a specific learning difference or part of neurodiversity in the UK and a learning disability in North America. Learners with dyscalculia are said to have significant difficulties in numerical processing [ 1 ]. It is increasingly acknowledged that these relate to arithmetic, statistics, ordinance, number and code memorisation and recall, with other individual variance [ 2 , 3 ]. Here, I chose to use “specific learning difference” (SpLD) to acknowledge that some feel SpLDs relate to a difference in learning needs but may not always result in learners identifying as disabled [ 4 , 5 ]. Most contemporary definitions state that these challenges are out of keeping with learner age, intelligence level and educational background [ 1 ], evolve over time but persist during adulthood.

Dyscalculia is a comparatively recently recognised SpLD with a relatively low ‘diagnosed’ population prevalence, with estimates ranging between 3% and 7% [ 2 ]. Awareness of dyscalculia is lower than more highly ‘diagnosed’ SpLDs such as dyslexia, dyspraxia and Attention Deficit and Hyperactivity Disorder (ADHD) [ 3 ], with a paucity of research-based evidence, especially relating to adult learners [ 2 ]. Of the two studies exploring dyscalculia in Higher Education Institutions (HEI), from the perspective of learners, both Drew [ 3 ] and Lynn [ 6 , 7 ] outlined poor understanding within adult learning environments and a lack of recognition of dyscalculia and of HEI learning support provision. Additionally, learner challenges were different to those described in dyslexia and dyspraxia studies, with understanding and perception of time, distance, finances, non-integer numbers, memorisation and recall of numerical codes and values being frequent issues. Potential complexity arose through possible coexistence of dyslexia or mathematical anxiety, varying learner-developed coping strategies effectiveness and learner coping mechanisms becoming ineffective during undergraduate or postgraduate education [ 3 ]. Drew’s [ 3 ] three healthcare learner participants had also experienced potential fitness to practice concerns either from themselves or educators.

Context for medical education

The number of DiT in postgraduate medical education (PGME) with dyscalculia remains unknown. Similarly, awareness levels of PGME educators, or what their experiences might be, of facilitating the learning of DiT with dyscalculia is unexplored. Indeed, there has been no published research to date relating to dyscalculia in PGME or undergraduate medical education.

This paucity of knowledge is set in the context of a presumed increasing proportion of UK PGME DiT learners with a disability resulting from increasing numbers of medical students in the UK reporting a disability [ 8 , 9 ] and in other countries such as Australia [ 10 ]. Data collection via the statutory education bodies, and the medical regulator, the General Medical Council (GMC), is challenging given the voluntary nature of SpLD declaration and persisting concerns regarding discrimination and stigma [ 11 ]. My Freedom of Information request to the GMC in February 2022 revealed that 1.25% of registered doctors have declared a ‘learning disability’ (including SpLDs) such as dyslexia.

The impact of dyscalculia on DiT and their educators is unknown. The GMC defines differential attainment as the gap in assessment outcomes between learners grouped by protected characteristic [ 12 ]. It recently commissioned research into recommending education providers create more inclusive learning environments for disabled learners [ 13 ]. Other recent research indicates that differential attainment may persist from school-based examinations through to medical school exit ranking scores and onto PGME examinations [ 14 ].

Currently, there is no publicly available information addressing the support of PGME DiT with dyscalculia within the UK, and no known prospective screening in place. Support, including reasonable adjustments for PGME DiT with additional learning needs is accessed through, and coordinated by, education bodies’ Professional Support Units (PSU), including Health Educator and Improvement Wales’ (HEIW) PSU in Wales. More widely, HEIW, the education body in Wales, is responsible for delivery and quality management of PGME in accordance with UK-level standards set by the GMC and medical speciality Royal Colleges and Faculties. Reasonable adjustments are changes, additions, or the removal of learning environment elements to provide learners with additional support and remediate disadvantage [ 15 ]. They are frequently purported to enable learners with SpLDs to learn and perform to their potential, although evidence for this is variable [ 16 , 17 ], with a marked lack of research relating to adult learners with dyscalculia.

Despite recent shifts from more teacher-centred to more student-centred learning approaches, with a range of andrological learning theories emphasising the learner being at the centre of learning [ 18 ], the educationalist remains a key element of many learning theories and PGME. Many PGME educators are practising doctors and, alongside this, must maintain a contemporaneous understanding of learning theory, training delivery, teaching, supervision and wider educational policies. However, how they approach, or would plan to approach, supporting learning for DiT with dyscalculia is unknown. Therefore, exploring the attitudes and perspectives of PGME DiT or educators regarding dyscalculia, both unresearched previously, through this paradigm could be valuable [ 19 ].

Educational challenges, learning needs and local context

For educators, a pivotal part of facilitating learning is understanding the learning needs of learners, felt to be a cornerstone of adult pedagogy [ 19 , 20 ]. Davis et al. [ 20 ] define learning needs as ‘’any gap between what is and what should be”. These can be established subjectively, objectively or a combination approach. However, Grant [ 19 ] cautions against conducting limiting, formulaic learning need assessments.

Identifying attitudes and understanding

Furthermore, attitudes are said to frame educator approaches and thus the learning experiences learners will have [ 21 ]. Attitudes are defined as “a feeling or opinion about something or someone, or a way of behaving that is caused by this” [ 22 ]. Interpretivism offers a route to exploring such attitudes by outlining that there is no one universal truth or fact, but instead many equally valid realities constructed by different individuals, their meaning-making and their experiences.

Again, research is absent within medical education relating to educators’ attitudes and understanding of learners with dyscalculia and how these might influence their approach. Current research indicates attitudes of HEI educators are often formed through their past - or absent past - experiences, lack of legal obligations knowledge and, for healthcare educators, the patient-centred role of clinical learners [ 23 ]. These appeared to help form their approach to facilitating teaching [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. Therefore, understanding PGME educationalist attitudes towards DiT with dyscalculia would be important in helping understand how learning is facilitated.

Thus, there exists a clear lack of published knowledge and understanding regarding dyscalculia set in a context of increasing awareness of the importance of inclusivity and addressing differential attainment within medical education. The importance of educators in facilitating learning of such PGME DiT suggests that exploring their perspectives and understanding could provide valuable insights into this understudied area. Such knowledge could provide benefit to learners and those designing and delivering programmes of learning for DiT and programmes of support for educators. This includes potentially exploring the attitudes and understanding of educators who have no direct experience of dyscalculia, given that this could be the context in which a DiT with dyscalculia finds themselves in a postgraduate learning environment. Assumptions, or perceptions generated without experience or knowledge of dyscalculia, are equally important to understand in a learning context when the awareness level and prevalence of dyscalculia within DiT is unknown. This allows understanding of how learning for DiT with dyscalculia may be facilitated in a knowledge and understanding-poor context, and furthermore, what educator needs exist and what further research is needed.

Consequently, the research question and aims below were constructed.

Research question:

What are the attitudes towards , understanding and perceived challenges of dyscalculia within postgraduate medical training by postgraduate medical educators?

Research aims:

To explore the awareness and understanding of dyscalculia that postgraduate medical educators may or may not have.

To determine the attitudes that postgraduate educators have towards dyscalculia and DiT with dyscalculia and how these might be formed.

To establish the challenges that postgraduate educators perceive they encounter or might encounter when facilitating the learning of a DiT who has dyscalculia.

To provide the basis for future research studies exploring how to facilitate the learning of DiT with dyscalculia during postgraduate training.

This scoping study was designed using an interpretivist, constructivist qualitative methodology to understand the phenomenon, in detail [ 30 ] as part of a Masters in Medical Education programme.

A literature review was undertaken to enable research question and aim construction. Firstly, a focused literature search ascertained the level, and lack, of evidence existing for the study phenomenon followed by four, progressively broader, searches to understand the wider context, between October 2021 and May 2022, revealing the lack of, or limited, literature existing.

The literature search was then performed by me using guidance [ 31 , 32 ] and twenty-seven research search engines. Additionally, a spectrum of journals was searched directly. Literature was also identified through snowballing.

Keyword search terms were developed and refined during the literature search, with limits on further broadening the search based on relevance to the areas of interest: postgraduate learners, educators and SpLDs using different term combinations exploring dyscalculia and postgraduate education, SpLDs and postgraduate healthcare learners, postgraduate educators and attitudes or knowledge or experiences of facilitating learning (appendix 1, supplementary material). Broadening of search terms allowed for exploration of analogous phenomena (other SpLDs), in other postgraduate healthcare and learning contexts, and for further research question development, returning 2,638 items. Papers were initially screened using their titles and the inclusion/exclusion criteria (below) generating 182 articles, papers and theses, with abstracts and reference lists reviewed. 174 papers and eight PhD theses were appraised using guidance [ 32 , 33 , 34 ].

Inclusion criteria were:

Primary research or review.

International or UK-based research reported in English.

Postgraduate higher education (university-level, post Bachelor or equivalent degree) setting.

Relating to postgraduate or higher educationalists’ views from any discipline and knowledge of SpLDs.

Exclusion criteria were:

Literature published in non-English languages.

Opinion and commentary articles.

Undergraduate setting, unless mixed cohort/study with postgraduate learners.

Ultimately, 17 papers and one doctoral thesis were included. Whilst grey literature, this thesis [ 3 ] was included due to the dyscalculia-focused insights provided and limited adult-based dyscalculia research elsewhere. After literature appraisal, research aims and a research question were formed.

Semi-structured interviews were chosen to enable data collection and interpretation through a constructivist lens, via open enquiry rather than hypothesis testing [ 30 , 35 , 36 ]. Study participants were PGME educators, actively involved in DiT learning within any PGME programme within Wales whilst holding a Medical Trainer agreement with HEIW. Participants held a range of educationalist roles, from education supervisor to local speciality-specific Royal College tutor (local speciality training lead) to training programme director (responsible for delivery of speciality-specific training across a region).

Interview question and guide design (appendix 2, supplementary material) drew on the six qualitative and six quantitative research-based, validated published tools used to explore similar phenomena, particularly those of O’Hara [ 37 ], Ryder [ 38 ], L’Ecuyer [ 23 ] and Schabmann et al. [ 39 ]. Design also drew upon Cohen et al’s [ 40 ] recommendations of composing open, neutral questioning.

Interview format was piloted using a PGME educator from England (thus ineligible for study recruitment) with modifications resulting from participant feedback and through adopting reflexivity; as per Cohen et al. [ 41 ] and Malmqvist et al. [ 42 ]. Participant interviews took place between May and June 2022 and were recorded via the University-hosted Microsoft Teams platform, due to the pandemic-based situation and large geographical area involved, whilst maintaining interviewer-interviewee visibility during the dialogue [ 35 ]. Recruitment occurred via purposive sampling, through two HEIW gatekeepers, the national Directors of Postgraduate Secondary (hospital-based) and Primary (General Practice-based) Medical Training in Wales. An email-based invitation with project information was distributed to all postgraduate medical educators with a current HEIW Medical Trainer agreement, regularly engaging in the support of learners within PGME training, in Wales. In this case, the gatekeepers in HEIW were individuals who could grant permission and make contact with all potential eligible participants on behalf of myself, through their email databases, whilst adhering to UK data protection regulations [ 43 , 44 ].

Ethical considerations

Formal ethics approval was gained from the Cardiff University School of Medicine Research Ethics Committee. Health Research Authority ethics approval was considered but deemed unnecessary. Informed written and verbal participant consent was obtained prior to, and at the point of, interview respectively. Additionally, verbal consent for video recording was sought, offering audio recording or notetaking alternatives; however, participant discomfort was not reported. Mitigation options to avoid selection bias included selecting alternative volunteers if significant relationships between the researcher and participant had existed.

Invitations to participate were circulated to approximately 2,400 to 2,500 postgraduate secondary care trainers and 600 primary care trainers. 18 individuals indicated interest in participating, one cancelled and seven did not respond to follow-up within the two-month timeframe the MSc project schedule allowed for. Subsequent reasons given for two out of seven who subsequently responded out of timeframe included clinical demands and unexpected personal matters. 10 postgraduate educators were interviewed and all allowed video-based interview recording. Interviews lasted between 40 and 60 min. Interviews were transcribed verbatim by me and checked twice for accuracy, with participants assigned pseudonyms. Data analysis was conducted using reflexive thematic analysis (RTA) and undertaken by me, the author, as the single coder and Masters student, with transcripts analysed three times.

RTA followed the six-step approach of Braun et al. [ 45 ], Braun and Clarke [ 46 ] and Braun and Clarke [ 47 ], with a primarily inductive approach [ 47 , 48 ] through an iterative process. Both latent and semantic coding approaches were used, guided by meaning interpretation [ 49 ].

RTA allowed exploration through an interpretivist lens. Discussions persist regarding how RTA sample size sufficiency and ‘data saturation’ are determined, with RTA placing more emphasis on the analyst-based individualism of meaning-making. Therefore, mechanisms for determining thematic saturation are purportedly inconsistent and unreliable [ 50 ]. Consequently, sample size was based on the maximum number of participants recruited within the set project time limits.

Reflexivity

I strove to adopt reflexivity throughout, using a research diary and personal reflections, referring to Finlay [ 51 ] who stated that such subjectivity can evolve into an opportunity. My interest in the studied phenomenon resulted partially from my experiences as a DiT with SpLDs and from being a DiT representative. Acknowledging this was important given my perspective, as an intrinsic part of this research, could have affected data gathering, interpretation, and, ultimately, study findings through introducing insider status.

Additionally, holding an influential role within the research, with potential for ‘interviewer bias’ [ 52 ], I adopted Cohen et al.’s [ 53 ] recommendations, committing to conscious neutrality during interviews and use of an interview prompt list, whilst striving to maintain a reflexive approach. Alongside this, the impact on credibility of this study being part of a Masters project, limiting scale and timeframes were considered and mitigated by exploring these within the discussion and referring to this research as a scoping study.

Educators with limited to no direct experience of learners with dyscalculia knew little to nothing about dyscalculia (Fig.  1 ).

Summary of themes and subthemes generated

Furthermore, of the participants who did, these educators cited close second-hand experiences with family members or past learners with dyscalculia which helped shape their understanding of dyscalculia. Those that had no direct experience drew on empathy and generalisation, extrapolating from the greater knowledge and confidence they had in their understanding regarding dyslexia or other SpLDs or even analysis of the term ‘dyscalculia’ to form definitions and perceptions.

“Absolutely nothing… I saw it , [dyscalculia in the study invitation] didn’t know what it was and Googled it so very , very little really. I suppose in my simplistic surgical sieve head , I would just sort of apply the bits and pieces I know around dyslexia.” P10 .

All suggested dyscalculia represented a specific set of challenges and associated learning needs relating to numbers, numeracy or quantity where overall intelligence was preserved. Educators saw each learner as being an individual, therefore felt dyscalculia would present as a spectrum, with varying challenges and needs existing. Dyscalculia was seen as persisting lifelong, with the challenges and needs evolving with age and experiences. Common challenges suggested related to calculations, statistics, critical appraisal, awareness of time, organisation and recall of number-based information (such as job lists, blood results), spatial dimension quantification, prescribing, fast-paced tasks and emergencies, exams and learning-based fatigue or high cognitive load. Wellbeing issues relating to dyscalculia were also frequently perceived, with this potentially negatively affecting self-confidence and anxiety levels. All educators saw a key aspect of their role to be provision of pastoral support, in enabling effective learning.

Past educator experiences of dyscalculia were linked to perceived confidence in ability to support future DiT with dyscalculia. Educators felt their limited knowledge, with the primary source of information regarding dyscalculia being DiT with dyscalculia themselves, to be reflective of low levels of awareness, knowledge and identification within PGME, education systems and wider society. Some felt the proportion of PGME DiT with dyscalculia would be lower than for the general population, following challenging assessments during secondary school and undergraduate studies, but might be changing given widening participation initiatives within medicine. Others saw a potential hidden iceberg of later career stage doctors with unidentified dyscalculia who had completed training when speciality assessments relied less on numeracy.

“[It] was only because of my own experiences and my [relative] that I was able to kind of wheedle around and , you know , make them recognise that there was an issue and that , you know. But I - I think had I not had an awareness of it , I probably wouldn’t have recognised it , I think.” P7 .

Educators frequently used empathy when attempting to understand dyscalculia. Educators had mixed feelings about ‘labelling’ DiT as having dyscalculia although all felt identification of additional learning needs was key. Some felt labels were necessary to enable and better support DiT with dyscalculia in the absence of effective, feasible, inclusive education approaches, others noted the potential for stigma or generalisations.

None of the participants had received dyscalculia training. Some felt widespread societal normalisation of mathematics challenges adversely impacted upon if, and at what educational stage, dyscalculia identification occurred and needs were recognised. Many felt assumptions might occur regarding dyscalculia through others making generalisations from better known SpLDs, including dyslexia and dyspraxia, in the absence of other knowledge sources but that these extrapolations could be inaccurate and unhelpful.

“And I think there’s a lot of ‘oh you’re just bad with numbers’ or ‘ohh , you just can’t do , you know people are just , I , I suspect there’s a lot of people who have just been told they’re not very good at maths , aren’t there? And it’s just , you know they can’t , can’t do it , which you know is not really very fair , is it?” P7 .

Many felt PGME might represent a critical juncture for DiT with dyscalculia, where effective coping mechanisms developed in the past become ineffective. A variety of such coping mechanisms were suggested or hypothesised, often outlined as depending on the dyscalculia-based experience level of the educator, including checking work with others, calculator use and avoidance of numeracy-dense work or specialities.

Mechanisms were generally viewed positively except where perceived to reduce the likelihood of a DiT recognising dyscalculia themselves and seeking support.

Most felt positively towards learners with dyscalculia and their learning facilitation, especially those with greater experience of dyscalculia. Many balanced this positivity with potential concerns regarding patient safety. Concerns focused especially on heavily numeracy-based tasks, fast-paced situations, or when working independently in surgical or emergency prescription-based situations. Overall, concerns were heightened due to the clinical patient-based context to PGME learning. Two participants felt that not all DiT with dyscalculia should be supported to continue training in particular specialities where numeracy skills were seen as critical, such as ophthalmology.

“I am , and it just seemed really unfair that this one small thing could potentially have such a big impact and could potentially prevent [them] progressing and succeeding in the way that I think you know , [they , they] had the potential to.” P6 .

Educators outlined a dependence on the bidirectionality of learner-educator relationships to best facilitate DiT learning per se, and it was felt all DiT had a responsibility to be honest with educators. Some cited potential barriers to this collaboration, including past negative learner experiences, felt stigma, limited educator time and frequent DiT rotations.

“It’s a wonderful opportunity for learning which I really enjoy , because I think that this is a two-way process. You know , I think the DiT gives you things that you reflect on and you should be giving the DiT things that they reflect on” P5 .

Most felt they would take a one-to-one learning approach for DiT with dyscalculia. Group-based, fast-paced or numeracy-rich, higher risk clinical activity-based teaching would be more challenging to cater for.

For some, patient safety uncertainties abutted with the duality of being a clinician and educator, with perceived difficulty in quantifying clinical risks associated with learning and educators’ clinical workload demands limiting available time and resources. Thus, many felt that their educator roles always needed to be tempered with their duties as a doctor, prioritising patient safety and quality of care above all else.

“So , it’s not so much the learning , uh , issue that worries me. I think even if someone had dyscalculia the , uh , concepts of medicine could be understood and the basic outline of what we’re doing , but actually you’ve got to be quite precise in the vocational aspect of , of , of the training , and if you get it wrong , it’s a potential major clinical risk and obviously patient safety has to come first in everything that , that we do.” P4 .

Educators wished strongly for pre-emptive support in facilitating the learning of DiT with dyscalculia, feeling great responsibility both for DiT learning but also for upholding clinical standards and safety. Many felt they would approach HEIW’s PSU for reactive support, including seeking learner ‘diagnosis’, although some predicted this support, and their knowledge, might be limited. However, two participants outlined positive experiences after seeking PSU support.

Most educator participants supported reasonable adjustment use if patient safety and quality of care remained prioritised and preserved. Other conditions for supporting reasonable adjustments included if they enabled without giving undue advantage and if educator-related workload was not overly burdensome. Those with experience of dyscalculia more confidently volunteered reasonable adjustments suggestions, ranging from calculation-table or App access to additional time for numeracy-rich activities. Some perceived a challenging divide between clinical educators and SpLD education experts who could make potentially unfeasible reasonable adjustment recommendations, with participants suggesting the importance of greater involvement of clinical educators in developing support processes.

“If I’m honest , I don’t think we do it very well…They’re [reasonable adjustments offered] very simplistic , … you know , they’re very much based on a sort of global ability rather than realising that processing and other things might be impacted… We’re , we’re probably behind the curve and not really doing what could be done” P8 .

Further example quotes for each theme and subtheme can be found within appendix 3, supplementary material.

Experience shapes educator knowledge, understanding and attitudes

This study reveals novel findings regarding dyscalculia in PGME within a vacuum of prior research. Notably, participants’ views towards PGME learners with dyscalculia, including DiT potential to learn, practise and develop effective coping strategies, were substantially more positive and empathetic than in the closest comparable healthcare studies of other SpLDs [ 23 , 24 , 27 , 29 , 54 ]. Furthermore, the potential impact of societal normalisation of numeracy challenges on awareness of, and attitudes towards, dyscalculia explored by some participants has only previously been noted by Drew [ 3 ].

Educators’ expressions of a sense of personal or healthcare-wide lack of awareness and understanding of dyscalculia aligns with the current UK position [ 2 ]. But they also built on this, outlining how generalisation from other SpLDs or disabilities was frequently used to bridge the dyscalculia knowledge gap with some not recognising this as potentially problematic. This suggests a need for enhanced awareness and understanding within the healthcare education community of the potential fallibility of using generalisation to support learners with poorly understood additional needs.

Moreover, no other studies have revealed that healthcare educators with personal experience of a learner relative with a SpLD displayed universally positive attitudes towards DiT with the same SpLD. Whilst this could reflect inter-study methodological differences, inter-professional differences or the increasing emphasis on compassionate clinical practice [ 55 ], it also suggests influence of educator experience in attitude formation.

In addition to their attitudes, the impact of prior experience of learners with dyscalculia on educators’ knowledge, understanding and confidence was often acknowledged as important by participants. This was seen to an extent in the closest comparable SpLD studies, [ 24 , 54 ] and further shows the diverse influence of past educationalist experiences, particularly the establishment of deep, longitudinal relative-based relationships, aligning with social constructivism [ 56 ].

Unlike HEI lecturers in dyslexia studies [ 24 , 54 ], who frequently questioned the needs of learners, educators saw DiT with dyscalculia as intelligent and high-functioning, having credible additional learning needs. Needs were seen as variable unlike elsewhere. Additionally, the level of detail constructed regarding educators’ perceptions of the needs, strengths and challenges of each DiT with dyscalculia, evolving over time and experience, is not seen in non-dyscalculia SpLD studies and only alluded to for dyscalculia [ 3 ]. These differences, which may be partially explained by varying methodologies or cultural norms regarding how different SpLDs are regarded, are important to better understand.

Furthermore, the preferred educator approach of individualising learning for DiT with dyscalculia is not seen elsewhere in the literature, although this aligns with supporting learning within their zone of proximal development (ZPD). Rather, Ryder and Norwich found HEI educators actually expressed negative attitudes towards individualising learning [ 24 ]. Methodological and SpLD-specific factors may contribute to these differences, with this study’s findings aligning more closely with Swanwick’s proposal that PGME often emulates apprenticeship-type learning [ 57 ]. It would be valuable to establish the efficacy of individualised PGME-based approaches to facilitating learning with dyscalculia from DiT and educator perspectives.

Greater educator support and training regarding dyscalculia is needed

Educators’ perceived need for wider awareness of dyscalculia, alongside greater pre-emptive training and guidance tailored towards dyscalculia within PGME learning environments has also been described for other SpLDs [ 23 , 58 , 59 ]. Greater research is needed to develop such awareness and evidence-based training, with similar needs identified more widely in HEI for dyscalculia [ 3 ] and for other SpLDs [ 23 , 24 , 27 ]. Akin to some participants, Swanwick and Morris [ 60 ] discuss the increasing expectations on clinical educationalists to deliver professional-level education and Sandhu [ 61 ] explores participants’ expressed need for greater faculty development whilst rectifying the deficit of evidence-base for PGME educators to use.

The crucial importance of the bidirectionality of the educator-learner relationship, with educators perceiving themselves as learners too, is only subtly alluded to elsewhere [ 3 ]. Given the bidirectional learning relationship was reportedly undermined by frequent DiT placement rotations, fast-paced clinical environments and shift-based training patterns, further exploration of the appropriateness of current UK PGME training design for DiT with dyscalculia could be important.

Coping strategies are important to better understand

As with this study, Drew’s research suggested coping strategies for learners with dyscalculia to be potentially important, effective and helpful but could have limitations [ 3 ]. However, this study provides the first examples of coping strategies, potential or already used, by DiT with dyscalculia. It is crucial that research to develop better understanding of both positive and negative dyscalculia-based coping mechanisms occurs in the future given the broad participant concerns.

Identification is key but not fully enabling

Educators perceived early identification of dyscalculia to be key, showing commonality with dyscalculia, dyslexia and dyspraxia-based studies [ 3 , 25 , 28 ]. That identification was not seen as an absolute solution reinforces the need for further research exploring other disabling factors. However, the witnessed or potential negatives of being ‘labelled’ following dyscalculia ‘diagnosis/identification’, outlined by some participants, have been found only minimally elsewhere within learner-based dyslexia and dyscalculia HEI studies [ 3 , 25 , 28 ]. Negative consequences to labelling included the attitudes learners encountered within the clinical community, suggesting a need to understand cultural norm-related impacts. In contrast, the far greater positives to identification, and the necessity of labelling perceived by educators, were also seen in other SpLD studies [ 3 , 25 , 28 ], enabling self-understanding and access to support. Certainly, the need for improved dyscalculia identification approaches and training is highlighted by the lack of educator confidence in identifying dyscalculia where they had no relative-based experience.

Within the UK, voluntary dyslexia ‘screening’ processes are now offered to some medical students and DiT and similar opportunities could be offered for dyscalculia in the future. Moreover, accumulating evidence indicates an ever-greater importance of establishing equity of learning opportunity and that identification has a positive performance effect for DiT with dyslexia [ 16 , 62 , 63 ].

The PGME clinical context may limit support

Whilst educators clearly adopted a strongly student-centred approach to supporting learning with dyscalculia, addressing the influence of the duality of clinical educator roles on this approach is important. Educator supportive intent was twinned with tension between balancing effective DiT learning with guaranteeing patient safety within diverse, predominantly clinical learning PGME environments, sharing commonalty with L’Ecuyer’s nursing study [ 23 ]. Swanwick and Morris [ 60 ] note this influence on delivering training, with Sandhu [ 61 ] exploring general concerns regarding risk and clinical learning.

Even more pronounced perceived patient safety concerns were expressed in other nursing SpLD studies [ 23 , 29 , 54 , 64 ], and further post-qualification independent working concerns emerged [ 23 , 65 , 66 ], which limited educators’ willingness to support learning. Together, these tensions appear to set learning facilitation for those with dyscalculia within healthcare apart from non-healthcare settings. Therefore, healthcare-specific education research and training is needed to address this, especially given thus far, analogous concerns regarding dyslexia and clinical risk remain unproven.

The influence of educator-reported increasing clinical workload and resource limitations on approach towards supporting DiT with dyscalculia was similarly seen within nursing studies [ 23 , 29 ]. Whilst the impact of clinical demands on UK-based educators are broadly known [ 67 ], greater recognition of the potentially disproportionately negative impact on DiT with dyscalculia needs to be made by those overseeing training delivery.

Uncertainty regarding reasonable adjustments need addressing

Additionally, whilst educators were generally supportive of RAs for DiT with dyscalculia, most intending these to be enabling, caveats to RA introduction were substantial for some. Concerns regarding RA implementation for DiT with dyscalculia were similar to nursing and wider HEI SpLD studies [ 24 , 66 ], but less common or absolute, most relating to feasibility, fairness and adverse impact on educators. These are important to explore if inclusivity in PGME is to be further embraced. Furthermore, and similarly to HEI findings [ 24 ], participant concerns about externally-mandated RAs derived from distant SpLD experts suggest that harnessing coproduction, with greater involvement of clinical educators in RA design, could be important for future endorsement. Additionally, whilst the scale of potential RA suggestions for dyscalculia made in this study is novel, it is important that the experiences of DiT with dyscalculia themselves are captured and used to ensure adjustments are truly enabling.

Therefore, whilst this study reveals important and novel discoveries relating to educators, PGME and dyscalculia, establishing DiT experiences of dyscalculia and PGME is the most crucial avenue of future research to next undertake to better understand and enable both DiT and educators to fulfil their roles effectively and inclusively.

Limitations

As a small, qualitative scoping study undertaken in Wales, study findings cannot and should not be generalisable. Seemingly the first study in this area, transferability should also be considered carefully. Due to purposive sampling, those volunteering may have been more interested in this topic; therefore, findings may not reflect the range of knowledge, attitudes, and experiences of all PGME educators.

Furthermore, use of interviews for data collection and the resultant lack of anonymity may have altered participant contributions. Moreover, despite adopting reflexivity, as a relatively inexperienced, sole researcher, I will have engaged in interviews and analysed data with intrinsic unconscious biases, introducing variability and affecting finding credibility. Despite methodological limitations within this small scoping study, my intention was to construct detailed understanding, providing a basis for future research.

This study reveals, seemingly for the first time, the attitudes, understanding and perceptions of PGME educators relating to DiT with dyscalculia. It highlights that lack of awareness and understanding of dyscalculia exists within the PGME educator community, especially in the absence of relatives with dyscalculia, and that widely accessible, evidence-based approaches to identification, support, teaching approaches and RA provisions are needed and wanted by PGME educators.

The rich stories of participants illuminate the emphasis educators place on experiential learning in informing their perceptions and training approaches, especially in the absence of prospective dyscalculia training or evidence base to draw upon. Given this, including the impact of limited or complete lack of dyscalculia experience and the substitution of generalisation to fill knowledge gaps found in this study, there is a real need for greater PGME-focused research to pre-emptively inform and support all educators.

Furthermore, greater acknowledgement and understanding of the seminal influence that clinical context has on educators, their attitudes towards supporting DiT with dyscalculia and the highly prized bidirectional learning relationships, as revealed in this study, are needed. It highlights the need for greater research to better understand the impact that specific nuances of PGME might have on educators’ support of DiT with dyscalculia and further characterise unmet needs. Future research must begin to address educator uncertainties revealed in this study around potential concerns relating to patient safety and care and differential approaches for dyscalculia and unfairness to other learners to move PGME forward in an effective, inclusive and enabling way.

Notable in this study is the lack of the learner voice, and future research needs to begin to better understand the perceptions and experiences of DiT with dyscalculia of PGME across a wide range of aspects. These could involve those suggested by participants, including DiT PGME learning and assessment experiences, coping strategies, reasonable adjustments and cultural norm impact. Furthermore, clarifying the wider awareness and knowledge levels of PGME educators regarding dyscalculia via more quantitative approaches could help build breadth to the understanding of this poorly understood phenomenon alongside the depth provided by this study.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Attention Deficit and Hyperactivity Disorder

Doctors in Training

General Medical Council

Higher Education Institution

Health Education and Improvement Wales

Postgraduate Medical Education

Professional Support Unit

Reasonable Adjustment

Reflexive Thematic Analysis

Specific Learning Difference

United Kingdom

Zone of Proximal Development

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Acknowledgements

LJC would like to thank her academic supervisor Ms Helen Pugsley, Centre for Medical Education at Cardiff University, for her guidance and encouragement during LJC’s Masters project. LJC would also like to thank all the interview participants who took an active part in shaping this project. LJC is extremely grateful for their time, honesty and for providing such vivid and illuminating windows into their roles as educators. LJC would also like to thank Dr Colette McNulty, Dr Helen Baker and wider staff members at HEIW for their support in circulating her study invitation to trainers across Wales.

LJC did not receive any funding for, or as part of, the research project described in this paper.

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LJC designed and undertook the entirety of the research project described in this paper. She also wrote this paper in entirety.

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This study received ethical approval from Cardiff University’s Medical Ethics Committee. After discussions, it was felt that NHS Research Ethics Committee approval was not needed. Written and verbally informed consent to participate was obtained, with prospective participants being provided with information regarding the study and their rights at least three weeks before interviews took place.

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LJC is currently a final year GP registrar working in Wales with keen interests in differential attainment, inclusivity within education and civil learning environments. This paper is borne from a project she designed and undertook as part of her Masters in Medical Education at Cardiff University.

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Cheetham, L.J. “Because people don’t know what it is, they don’t really know it exists” : a qualitative study of postgraduate medical educators’ perceptions of dyscalculia. BMC Med Educ 24 , 896 (2024). https://doi.org/10.1186/s12909-024-05912-2

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Received : 27 November 2023

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DOI : https://doi.org/10.1186/s12909-024-05912-2

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