Research with additional considerations

In this post we will look at additional considerations around research with potentially vulnerable groups and research in a language or format other than English.

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Photo by Kate Kalvach on Unsplash

Contents

Introduction

If your research will involve potentially vulnerable groups or will be conducted in a language or format other than English (i.e. British Sign Language or Braille) then there are a number of other considerations that you need to make when designing your study and supporting documentation. We will explore both these groups in this post. If your research is with children or young people you may also want to take a look at the post linked below:

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Identifying potentially vulnerable groups

Vulnerability is a subjective term which means that whether or not specific groups of individuals are vulnerable will depend upon the individual circumstances of the participants. As an example, those aged over 60 are not automatically classed as vulnerable simply due to their age.

Some examples of potentially vulnerable groups may include, but are not limited to:

  • Refugees/asylum seekers/undocumented migrants.
  • Those with severe learning difficulties.
  • Those with mental health difficulties.
  • Those suffering from dementia/Alzheimer’s.
  • Those recovering from strokes or other medical conditions.
  • Those in emergency situations (e.g. A&E admissions).

If participants will be from potentially vulnerable groups you will need to develop a plan of how informed consent will be taken and how you will continue to assess whether the participant has the capacity to provide informed consent. In order to plan for this, the researcher must have sufficient experience of working with participants from these groups or you will need to enlist the assistance of a carer or care team.

If the participants lose the capacity to provide informed consent during the research, you must withdraw them from your study. Any participant who does not have the ability to provide informed consent would fall under the Mental Capacity Act and therefore cannot take part in a research study unless that study has been approved by the NHS Research Ethics Committee.

In addition to this, information sheets and supplementary information (e.g. research privacy notice) will need to contain more simplistic language. To assist researchers with this the University has templates for both information sheets and the research privacy notice called ‘easy-access’ that contain simple, one lined statements accompanied by a picture to provide additional clarity.

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Research in a language or format other than English

If conducting the research in a language or format other than English, you may need to provide translated documents to your research participants. Although translating documents can be a challenging task, we encourage researchers to use the easy access versions of supporting documents to make this process easier. You may also need to consider whether you need to have an interpreter accompany you throughout your interactions with participants.

If conducting the research in a remote community, you may need to seek permission from a village elder or family member before you can approach other members of the community. Ensure you are familiar with all cultural expectations before embarking on your research.

Another important consideration when working with these groups of participants is how many visits are required in order to complete the study. You want to ensure that you make the most of each visit, while not overburdening your participants. This may mean that you need to make multiple trips in order to ensure they do not become fatigued or you take up too much of their time.

Finally, you need to consider the location of the research and whether you are able to travel to meet your participants as opposed to asking them to come to see you. If conducting interviews, focus groups or observations, you should make every effort to reduce the burden on participants by travelling to a location that is convenient for them. If however, your research involves specific tests that must be done at a hospital for example, it may be appropriate to compensate participants for their time and travel expenses.

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Check your your understanding

Let’s take a look at what you have learned. Read the case study below and choose an option from the multiple choice question below it. You may choose more than one possible answer.

‘You want to conduct a research study with undocumented migrants about their experiences of accessing healthcare. To do this, you’ll be advertising at a variety of charitable organisations, through online support groups and using gatekeepers. You want to conduct interviews with individuals or families (including any children or young people), for up to 2 hours. You have gained permission from one of the charitable organisations to conduct the interviews on their premises so that support is available for the participants in the event that they become distressed.’

“What would be the best method of obtaining informed consent from the individual or family?” An accessible version of the above quiz question is available with the possible answers here.

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Summary

In this post we have explored research with additional considerations such as research involving potentially vulnerable groups and research in a language or format other than English.

If you haven’t already we would recommend you also read the other posts in this series which are linked below in the further support section or in this master post: ‘Managing and sharing data from human participants’.

The next post in this series is Data protection considerations.

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