Ethics, safeguarding and unintended consequences

There can be sensitivities around asking people about their experience of being stigmatised.

It is likely to involve personal questions and might draw on prior experiences of abuse, and has the potential to cause distress.

It is therefore vital to think about the ethics of your approach and any safeguarding issues in all stages of the project, including during data collection.

Keep in mind ethical principles, as discussed in Sightsavers’ guidance for ethical standards in evaluation, data collection and analysis.

You may also need to take extra steps to safeguard the participation of children and vulnerable groups in the data collection process. If a safeguarding concern arises, your own safeguarding policy and procedures will need to be followed. This also needs to be built into the training of data collectors and detailed in the consent forms. Read about Sightsavers’ approach to safeguarding

Follow the ethical principles

Respect people’s rights, dignity and diversity

Always respect differences in culture, religion, power relationships, gender roles and identity, disability, age and ethnicity, and be mindful of the implications of these differences during planning and delivery.

Be transparent and ensure confidentiality

Make sure you’re clear about any decisions made and actions taken. Ensure sensitive information cannot be traced to its source so the identities of the individuals are protected at all times.

Maximise benefits and avoid harm

Seek to minimise risks to, and burdens on, participants. For example, when discussing experiences of stigma, ensure there are clear pathways to refer people for counselling and support where needed.

Ensure voluntary participation

Informed consent must be sought from all participants in an inclusive way, and you must always respect participants’ choice not to take part.

Adapt your materials where needed

In situations where the participants are children or vulnerable groups, the consent formats used will need to be adapted accordingly.

Work with integrity

Ensure your work does not inadvertently exacerbate stigma or negatively affect or harm the people you engage with, particularly when collecting sensitive data.

Case study
Unintended stigma outcomes in Ghana and Nigeria

In the Nigeria inclusive family planning project, social media influencers generated tailored anti-stigma messaging. They highlighted that social media can result in stigmatising comments that have to be planned for and moderated.

The Ghana Participation Programme (Ghana Somubi Dwumadie) aimed to reduce stigma for people who were deaf and had mental health conditions. A mid-term review highlighted that they felt ‘‘deepened stigma by their own peers” without a mental health condition.

As a result, they avoided using the spaces created for them as part of the project. It was necessary to pause project activities and revise the approach.

Three colourful posters, featuring text saying 'Everyone has a right - let's protect it!'

Some deaf people with mental health conditions felt a deepened stigma, and decided to stay away from the very spaces that the project created for them.

Disability stigma reduction interventions study report (PDF)