Ethical concerns
- Study participants: My proposed study design will include directly gathering data from participants face-to-face. The proposed participants would all be adults. However, as full-time carers of people with varying conditions, then they could potentially be vulnerable, as a result of known associations between caring and having diminished mental and physical health. Anyone can be a carer, so there is a possibility that some may themselves be from a marginalised group, as well have conditions that may be stigmatised.
- Informed consent: Would be required. An information sheet detailing the research project, its aims and objectives, methods, as well as dissemination plans would be produced for potential participants. The information sheet would set out any potential risks, as well as details relating to confidentiality and data protection. Each participant would be asked to complete a consent form before taking part in an interview.
- Confidentiality and data protection: participant names will be anonymised following interviews. Personal details will be stored separately from transcripts and in secured documents. Transcripts would be reviewed for potentially identifiable data and appropriate mitigations taken, including redaction. Participants would be given the opportunity to review transcripts to comment on potentially identifiable data that they would be uncomfortable with being published.
- Potential physical or psychological harm, discomfort or stress: caring can be all consuming and stressful, so asking carers about their experience of respite care and the difference it makes to their mental and physical health could lead to the participant expressing strong emotions and reflections of their wellbeing. Although there is some evidence that this can be cathartic for carers, it may also risk a carer having a negative response, feeling upset and discomforted. Published findings may also impact on participants when read and may trigger similar emotional responses. The overall findings and any conclusions may also have an emotional impact, especially if they do not reflect the opinions/beliefs/expectations of the participant.
- Moral issues or conflicts of interest: As an employee of a charity that represents unpaid/family carers and as a trustee of a charity that provides short-term breaks for carers there is a conflict of interest that should be considered and managed. The results of the study could support the work of both organisations or depending on the findings be potentially detrimental. There would be no personal financial benefit to me. Ensuring a robust protocol is in place and being reflective throughout and honest about these other roles will be important to allow for transparency and rigour in the study and its findings.
Hi Richard,
This is a good starting point! Regarding your thoughts about potential physical or psychological harm, discomfort or stress, I totally agree with what you say here. Do you envisage how you would address/manage these issues as your data collection progresses, for instance, if one of your research participants becomes very upset during the interview or share confidential information, etc.
Evgeniya.
Hi Evgeniya, thanks for your feedback. I think firstly, I would prepare for interviews by perhaps undertaking some training on how to deal with difficult conversations. There are a few online courses that are free to access. I have also worked for organisations where I have been in a position where people have shared confidential information, or upsetting stories and so have that experience. Being clear to participants that they can stop at any time or reassuring them that it is okay for them to be upset and share, if they want to. Creating a safe space/environment for them to do this is important. There are also a range of services, including information and support telephone lines and website that I would refer my participants to if they became upset. I think I would also make a point of following up with any participants post interview to check on them. I would also ask them to review transcripts and give them a chance to redact elements of their interview from being used in quotes. Cheers R
Thank you, Richard, for following up on my questions/suggestions. You make excellent points, worth including them in the methods chapter of your dissertation next year. Also you may want to very briefly refer to them in your poster assignment for this course.
P.S. Prior to your fieldwork next year, to ensure that you have a plan in place, it would be helpful to develop a participant distress protocol, Dr Suzanne Goppy demonstrates one example in her lecture on research ethics. The link to this recording is now available on Learn.
Evgeniya.