The UK Statistics Authority has a statutory objective of “promoting and safeguarding the production and publication of official statistics that serve the public good”. It is important to consider, and clearly communicate the public good benefit of any research that we do. The term public good is considered in the Statistics and Registration Service Act 2007 and the Research Code of Practice and Accreditation Criteria within the Digital Economy Act 2017. Further guidance on considering and effectively communicating public good has also been published by the UK Statistics Authority’s Centre for Applied Data Ethics.
You can ensure the public good through qualitative research in several ways. For example, a project may attempt to:
- influence specific policy decisions or service delivery
- provide further research in a particular area by filling gaps or building upon existing literature
- challenge existing research that policy has been developed on
- extend the public’s understanding of specific issues, for people to make better informed decisions about social, political, or economic issues and processes
It is important to consider the balance of the potential benefits of your research, and any risks or negative implications (which may be direct, or indirect) that the research may have on individuals, the public, or a specific group or community.
Researchers have an ethical duty to ensure that the data reflects the voices and experiences of the groups that are being researched. Failing to do so may limit the potential for the research to realise its intended benefits and may lead to inaccurate or incomplete conclusions. This in turn could harm both the population being studied and the wider public.
Distress Protocols- Minimising Potential harm
Participants should not suffer any harm, risk, or disadvantage, as a result of taking part in a research project. It is therefore important for researchers to consider any potential harmful consequences which could affect anyone involved in the research. This includes participants, the general public, and the researchers themselves. Harm may be emotional, physical, social, or psychological, and could occur at any point in the research process, from data collection through to dissemination.
You should follow distress protocols to manage any potential harm throughout your research. You should create these documents prior to data collection. These should be specific to each study, and outline any possible risks attached to it. You will typically need two distress protocol documents – one for participants, and one for researchers. Some of the key features included in each of these documents is provided below.
Participants may exhibit signs of distress in different ways. A participant may verbally indicate that they are experiencing distress, telling the researcher directly how they are feeling. However, it is also important that researchers are aware of changes in the body language of the participant, as they may not always want, or be able, to verbalise how they are feeling. For example, a participant may start to cry or shake, start fidgeting, stop answering the questions, or limit the detail they give in answering questions.
If a researcher suspects that a participant is becoming distressed, they should pause the discussion immediately. You should have strategies in place to ensure that, where possible, you are able to pause the conversation in a way which doesn’t feel abrupt to the participant. This will be easier to do when conducting one-on-one research such as interviews, or cogability testing, in comparison to focus groups or ethnography. Researchers should consider these difficulties when they create their distress protocols, and tailor them to suit the method being used.
Researchers may also wish to consider ways for participants to let them know that they wish to take a break or leave, without needing to verbalise this. For example, participants could be given coloured cards which they can show to researchers should they wish to leave, take a break, or move the discussion on. In the case of focus groups, which involves group participation, discretion should be exercised where possible, to ensure that the participant is not further distressed or embarrassed.
Once the discussion has been paused, you should take the time to discuss what is causing distress to the participant, and how this can be avoided going forward. Participants may feel comfortable continuing with the discussion after a break, but they should also be given the option to withdraw from the research. Researchers should determine how to proceed with the participant, and whether it would be beneficial to remove certain questions or topic going forward.
If the participant is displaying signs of mental or physical distress, the researcher may wish to:
- ask if there is anyone they go to for support
- suggest they contact their GP or mental health provider (or, if the situation requires, emergency services)
- provide details of relevant support services
When researching sensitive topics, all participants should be given information on further support services that they can contact should they wish to speak about issues raised by the research with a trained professional. This information should be given to the participant at the end of, or immediately after the discussion. When researching sensitive topics with the same participants on multiple occasions, all participants should be given the information following each discussion. It is not the responsibility of the researcher to provide counselling to participants, however researchers should be prepared to guide participants to these resources when required.
Researchers should be iterative and reflexive in their approach to data collection. If, on repeated occasions, particular questions or topics are causing distress to participants, researchers should find ways to mitigate this. This could be done by changing the wording or focus of the question, or if necessary, removing it completely. It may be useful to discuss this with colleagues before continuing with data collection.
Whilst we often think about the potential harms research can cause to participants, it is also important to consider the negative effects that research may have on the researcher. Typically, this may be physical or psychological harm to the researcher. Psychological harm may occur as a result of the participants description of their life experiences, or emotional fatigue as a result of undertaking lots of data collection in a short period of time.
Dependent on the sensitivity of the research topic, it is recommended that data collection is undertaken by two or more researchers to help limit researcher fatigue. Regular debriefing meetings should be scheduled after interviews and discussions to ensure that the researchers are able to discuss any concerns they may have, and to ensure that they are not being negatively impacted by the topics being discussed. These should happen as soon as possible after each discussion.
Where data collection is taking place in person, researchers should make colleagues aware of the time, date, and location of the meeting. This is so that researchers can be more easily safeguarded should something go wrong. If conducting data collection in a public space or group setting, it is recommended that researchers work in pairs. This helps to ensure their safety, but also allows for the researchers to work together. For example, one researcher can lead the session whilst the other takes notes, or one researcher can continue to recruit participants whilst the other leads a session.
Researchers may find it beneficial to use a journal to document their experiences with data collection, and their thoughts and feelings, depending on the research subject. This can help researchers to reflect on any issues which have affected them throughout the research process. Field notes may also be useful when analysing the data. This may help you remember and contextualise specific details which may help to more accurately interpret the data.
Any team members who are transcribing or analysing the data should be alerted to any “difficult” interviews or discussions. This allows them to be prepared for any sensitive or distressing material. You should also identify support services that may be useful to researchers if they feel distressed or concerned throughout the research process.
Inclusivity and Accessibility
When planning your qualitative research, it is important to consider the participant groups that you intend to include, and what they may need to be able to participate in the research. This is particularly true when researching populations who are considered vulnerable, or if your research topic is sensitive.
Researchers should be aware of the needs of their participants, which may be different dependent on the individuals taking part. For example, it may be necessary to think about the accessibility of location and the modality of collection. Whilst many people will have access to transport, and may be able to travel, others may not. Similarly, whilst some participants may be happy to invite a researcher into their home, others may not feel so comfortable, or may not be able to provide a quiet, private environment whilst at home due to competing priorities. You may also need to be flexible with the timings of your data collection.
For these reasons, researchers may find it appropriate to conduct data collection online. This has become particularly common since the Coronavirus pandemic. However, you cannot assume that all participants will have access to the technology or the digital literacy skills needed to participate.. You should consider this when designing your research project.
We also have a legal duty to address inclusivity when collecting and using data for research and statistics under the Equality Act 2010. The UK Statistics Authority’s Inclusive Data Taskforce considered the inclusivity of data in relation to a range of areas, including:
- The 9 protected characteristics of the Equalities Act (i.e., age; disability; gender reassignment; marriage and civil partnership; pregnancy and maternity; race; religion or belief; sex; and sexual orientation);
- Additional areas associated with the Sustainable Development Goals (e.g., income; migrant status; and geography);
- Other topics that would allow contextual and cross-cutting insights into equalities (e.g., socioeconomic status, access to the natural environment, intersectionality); and
- Data on those at risk of greater disadvantage or who may be ‘missing’ from household surveys (e.g., homeless people, those not resident in private households).
Mitigations and Advice
- Though a project may have risks associated with it, this does not mean that it should not be done. However, careful consideration should be given to any and all potential risks, and how these can be mitigated. Can you justify the risk in order to achieve the intended benefits? If you are unsure, then it may be beneficial to talk through your risk and benefit lists with colleagues, or any relevant interest groups or stakeholders.
- Researchers should consider who they wish to participate, and whether there is justification to expose them to the research in hand. Some topics and participant groups may be ‘over researched’ so it is important to ensure that desk research and literature reviews have been conducted for your research to contribute to the research that already exists. This does not mean you should not work with vulnerable populations for your research, but rather justification for exposing them to the project should be considered.
- Researchers should consider providing resources to participants guiding them to additional support services. This is particularly important when the research topic is sensitive in nature. Participants should also be given researcher contact details, should they wish to discuss any problems relating to the research before, during, or after participation.
- The qualitative method you use must relate specifically to the research question and the research design must address this. The research question must give clarity for the scope of data collection so there is not more data collected than necessary. When conducting qualitative research with participants, a clear research question will ensure you are not asking for more insight into their privacy than needed.
- Researchers should be suitably trained in the chosen methodological approach before conducting research in the field with participants. Researchers may find it beneficial to take part in a mental health first aid course, especially when conducting qualitative research on sensitive topics.
- Careful consideration should be taken to ensure that you support your participants to engage with the project. This includes thinking about what type of support different groups or individuals may need, and how their involvement in data collection can be made as easy as possible for them.
- When recruiting participants, it is important to ensure that you consider any barriers to data collection for different groups, and how best to mitigate these. These barriers may be physical, social, institutional, or attitudinal.