Participants should be given the option to have project communication materials shared with a trusted person to support their understanding of these materials, particularly if there are any likely communication issues, such as those related to language, culture, or health status. Participant preferences for logistical or emotional support from these people may change over the course of their involvement, so there should be the functionality to adjust participant preferences during the project.
Considerations
- Participants should be given the option to have study communication materials shared with a trusted person to support their understanding of these materials, particularly if there are any likely communication issues, such as those related to language, culture, or health status.
- For some groups of participants, a support person may be part of the research project (e.g. guardians of minors, or carers of people who can’t provide consent). In these cases, the communication needs of the support people also need to be considered.
Participant experience
- Support people may provide invaluable assistance to the participant by translating or simplifying language used in the research project, or providing logistical or emotional support with study events or tasks.
- They can also provide a “second set of ears” to help with processing and recalling what can be quite complicated or overwhelming information, especially for major milestones or disease assessment visits.
- There's a change in how people interact as they get as they pass through different ages, but the other thing that can happen during the course of the trial is that your ability to interact with the information may change due to your health condition, or various other things. You may become more or less able to interact with the information that the study is handing out.
- I'm not happy to engage or bring somebody with me in the initial studies unless I need to. I think it all depends on the different stages of the study.
- You may nominate a person not to necessarily have all the information, but I think it's really helpful for families supporting and walking their journey alongside to have information that they understand of what their loved one is going through. Even if you're not involved, it's just that understanding and they're not always able to share that information in a way that you can understand.
- Having the option to have a support person to assist them to do a research project might make the difference for whether someone takes part.
Suggestions
- Participant preferences for support people should be checked regularly and contact lists kept up to date.
- Any communication needs/preferences for the support person should also be considered
- This should be opt-in, unless required by the study design.
