Ethical considerations

Talk based methods

Unlike other settings (e.g., academia, NHS), currently, work we design and deliver often does not involve any formal ethical approval process. However, ensuring we adhere to ethical best practice is essential.

Interviews and focus groups can often involve talking about personal experiences, sensitive topics, and power imbalances between participants and researchers.

In a public health context, ethical considerations are especially important given statutory responsibilities, safeguarding duties, and the potential use of findings to inform policy, services, or commissioning decisions.

Mason, J 2018, Qualitative Researching. Third edn, Sage Publications Ltd.

Key ethical principles

The following principles underpin ethical qualitative research and evaluation¹.

Maximising benefit (beneficence)

Talk-based methods should be used for a clear and meaningful purpose.

Only use interviews or focus groups where the insights generated are likely to contribute to benefits for participants, communities, services, or the wider public.

Participants should be told why their views matter, how findings may be used and how the work could lead to any change or improvement.

Include a ‘why should I take part?’ section in your information sheet or recruitment materials which communicates the benefits of taking part.

Minimising harm

Participants should not experience any harm as a result of taking part in an interview or focus groups and you should take all necessary steps to minimise harm to your participants.

Talk-based methods may involve discussing sensitive or personal experiences, but participants should always be informed in advance if sensitive topics might come up.

Researchers and facilitators should:

• Use sensitive and non-judgemental language

• Allow participants to skip questions or stop at any time

• Look for signs of distress  and respond appropriately

Always signpost to resources (e.g., local support services) in case participants require support after taking part in an interview or focus group.

Informed consent

Informed consent is the voluntary agreement to take part in research with full understanding of what it means to take part. 

Consent must be actively obtained before any interview or focus group takes place. Participants should understand:

• The purpose of the work

• What taking part involves (including recording, if applicable)

• How their data will be used and stored

• That participation is voluntary, and they can withdraw at any time (even during an interview or focus group)

The consent process should be proportionate and appropriate to the group involved. For example:

• If you are working with children or young people, you might need to obtain consent from a parent or carer as well as the young person.

• Where literacy, language, or accessibility might be a barrier, verbal consent and clear explanation may be more appropriate than written consent.

Consent in talk-based methods should be treated as ongoing, not a one-off. Participants should be able to pause, decline to answer questions, or withdraw during the discussion. The Verbal, written and ongoing consent section provides more information.

Confidentiality

• Any information respondents provide should be kept confidential (i.e., information should be kept secure, private and not shared in a way that identifies them).

• Access to recordings, transcripts, notes, and analysis should be limited to named colleagues who need it for the work.

• You should be transparent in your approach to confidentiality to help participants better understand who will have access to their data, how it will be stored, and how their data will be protected.

In focus groups, confidentiality has practical limits. Participants should be reminded that whilst researchers or facilitators will treat the data confidentially, they can’t control what other participants do with what is shared in the group.

All projects will need a Data Protection Impact Assessment (DPIA) pre-screen. For complex or sensitive projects, you may need to complete a full DPIA before your project begins. If you are collecting special category data (e.g., ethnicity, religion, health status), you may need approval from Camden’s Data Protection team.

Anonymity

Interviews and focus groups are not anonymous, because you know who the participant is. This should be clearly explained to participants from the outset.

Whilst we can’t guarantee anonymity², anonymisation should be used wherever possible when reporting findings in outputs.

• Names, roles, or any identifiable details should be removed or altered in transcripts and reports.

• Care should be taken where participants have unique roles or experiences that could make them identifiable (e.g., Camden’s Director of Public Health).

In focus groups, participants should be reminded not to share information discussed in the group outside the session, while recognising that this cannot be enforced.

Data security

• Any data you collect must be stored, and managed securely and in accordance with Camden’s data protection policies. This includes any audio or video recordings, transcripts, memos or notes, or analysed data.

• Plan in advance where and how you will store data securely, who will have access to the data, and how long you will keep it for.

• Video and audio files should be deleted as soon as they have been transcribed. Transcripts should be deleted after you have written any final reports or outputs.

• Remove or separate identifiable information from transcripts and anonymise data during transcription and analysis.

• Use council-approved secure systems (e.g., SharePoint) and limit access to only the people who need it.

It is important that these principles are maintained throughout the data lifecycle, not just at the point of data collection.

Verbal, written and ongoing consent

When planning your interviews or focus groups, you will need to decide how consent will be obtained initially, and how it will be maintained throughout the project.

Choosing between written and verbal consent

Every project is different and there is no one size fits all approach to consent. The most appropriate option depends on the level of risk, the nature of the topic, and the needs of participants.

It is sometimes argued that formal written consent is not necessary if a participant gives consent directly to the you³. However, where possible, it is best practice to collect written consent from participants. This gives individuals time to consider whether they want to take part and provides a clear record of their consent.

Verbal consent might be appropriate when written consent would create unnecessary barriers (e.g., limited literacy or digital access).

If you do use verbal consent, it should always be structured and well documented. This might include:

• Using a short script at the start of the interview or focus group

• Audio-recording the consent process

• Making a clear note that consent was given, with the date and method

Ongoing consent in practice

Consent does not end once the form is signed or the script is read. In talk-based methods, discussions can evolve ways we don’t always expect.

Good practice for ongoing consent includes:

• Checking in with participants during the session, particularly if topics become more sensitive or emotional

• Reminding participants that they do not have to answer every question

• Allowing participants to pause, or stop the interview or withdraw from the focus group

• Being attentive to verbal and non-verbal cues that may indicate a participant is upset or feeling uncomfortable

Get started with the templates provided, including consent forms and information sheets which you can use in your own project.

Working with vulnerable participants

‘Vulnerable’ refers to individuals or groups who may be at greater risk of harm, exploitation, or undue pressure in a research context. Groups who may require additional ethical consideration include, but are not limited to:

• Children and young people

• People with learning disabilities or cognitive impairments

• Older adults, particularly those with dementia or reduced capacity

• People experiencing mental health difficulties

• People experiencing homelessness or housing instability

• Refugees, people seeking asylum and people whose immigration status may make participation feel risky

• People in contact with the justice system

• People with lived experience of trauma, abuse, or the care system

• Communities facing significant socioeconomic disadvantage

• Individuals in residential care or those involved with statutory services

Practical considerations when working with vulnerable groups

• Assess and document capacity and consent carefully: For participants who may have difficulty understanding or retaining information (e.g., those with learning disabilities, dementia, or significant mental health difficulties) consent needs to be approaches with particular care. This could include using easy-read or simplified information sheets, allowing additional time for questions, or involving an advocate or support worker.

• Adapt your materials: Topic guides, information sheets, and consent forms should be designed with your participant group in mind from the outset. Think carefully about reading age, use of images or visual aids, language and translation needs, and how suitable your materials are for all participants.

• Think carefully about who is in the room: For some people, the presence of a support worker, carer, or advocate may be helpful and reassuring, but it can also affect what participants feel comfortable to share. Consider this in advance and, where possible, give participants a choice.

• Build in additional time and flexibility: Interviews and focus groups with vulnerable groups can often take longer, require more frequent breaks, or need to be conducted across more than one session.

• Signpost support and resources: Ensure participants are given information about relevant support services and that this is offered genuinely, not just as a formality at the end of an information sheet.

Safeguarding responsibilities and escalation pathways

Using talk-based methods can lead to disclosures of harm, abuse, or risk. It is essential that we are clear about our safeguarding responsibilities before we begin collecting data.

Best practice for managing disclosures:

Design and agree a clear safeguarding procedure with your team - clear escalation pathways should be agreed in advance.

It is best practice to allocate a Designated Safeguarding Lead⁴ (DSL) – this could be the project or portfolio lead, a consultant, or your line manager.

Participants should be informed of the limits of confidentiality – especially in the context of safeguarding. Participants should understand that safeguarding concerns will have to be shared beyond you and your team.

Make sure anyone collecting or analysing data understands safeguarding responsibilities and knows how to escalate and log concerns (e.g., to the consultant/team lead, or DSL for the project).

Duty of care and signposting

If your interview or focus group is about a sensitive topic, include links to online resources or access to local/national support services. Signposting should be proportionate and appropriate to the context.

Avoid taking on roles beyond your remit or expertise – if you are not sure about something, reach out to your line manager or portfolio lead for advice.

Use age-appropriate safeguarding processes. If you are involving children and young people, consider how you will obtain consent and ensure safeguarding leads (e.g., in schools) are involved, if appropriate.

Lone working

Interviews and focus groups may involve lone working, particularly when sessions take place in community settings, outside usual working hours, or are conducted one-to-one.

Protecting the safety and wellbeing of researchers and facilitators is essential. It is really important that researcher/facilitator safety (physical and emotional) is taken into consideration as part of your project planning and design.

Lone working arrangements should be planned in advance and aligned with organisational policies.

Best practice for lone working involves:

• Ensuring (at least one) colleague knows where and when sessions are taking place, including expected start and finish times.

• Pre-planning how to end a session if you feel uncomfortable or unsafe

• Identifying an “at-home” contact⁵ - someone who can be contacted for support if you need it (especially important for out of hours work)

NoteVignette: Managing a disclosure during an interview

A researcher is conducting a one-to-one interview with a parent about their experiences of accessing health services in the borough. During the interview, the participant begins to describe their home situation, and it becomes clear that they are describing ongoing neglect and unsafe living conditions affecting their young child. The participant becomes visibly distressed and says they have not spoken about this to anyone before.

Before the interview began, the researcher had explained, as part of the informed consent process, that everything discussed would be confidential, but that there were limits to confidentiality if something was shared that raised a concern about the safety of a child or vulnerable adult, the researcher would have a duty to share that information with the appropriate person. The participant had confirmed they understood this.

The researcher does not ignore the disclosure or attempt to steer the conversation back to their questions. Instead, they pause the interview, acknowledge what the participant has shared, and respond in a calm, non-judgmental tone. They remind the participant of the confidentiality limits they had discussed at the start, and explain clearly that because of what has been shared, they will need to speak to a colleague to make sure the right support can be put in place for the child.

The researcher does not attempt to investigate the issue themselves, make judgements about the situation, or offer assurances about what will or will not happen next. They ask the participant whether they would like to continue with the interview or whether they would prefer to stop.

At the end of the interview, the researcher makes sure the participant receives information about relevant support services, including where they can seek advice or help themselves if they choose to.

After the interview, the researcher follows the agreed safeguarding escalation pathway immediately. They document the disclosure factually and without interpretation, and seek advice from the project’s designated safeguarding lead, who takes responsibility for determining next steps.

Footnotes

1. Ethical considerations associated with qualitative research methods - GOV.UK

2. ‘Anonymous’ is different from ‘anonymised’. Anonymous means no personal or identifying information is collected at all. Anonymised means some identifying data is collected but then removed (or separated) so that information can’t be linked back to an individual.

3. Consent – UKRI

4. A DSL is a named, nominated person who is responsible for ensuring the safety and wellbeing of children and vulnerable adults. See Safeguarding for designated safeguarding leads | NCVO for more information.

5. “At home” contacts are particularly when working with children and young people, if a participant does not arrive for a planned session, or there are concerns for their welfare.