PRINCESS: Information for Families and Friends of Care Home Residents

Finding out more about the PRINCESS Study

If you have a family member or friend who lives in a care home and is considering taking part in the PRINCESS study, then you probably want to find out more about the study. You can find out more by:

  • Attending one of the PRINCESS coffee mornings which are held at participating care homes.* Our Research Nurses will be there to chat to you and your family member/friend about the study. They can answer any questions that you may have and also provide information booklets for you to take away and consider.

Look out for PRINCESS posters at care homes advertising our next coffee morning session.

  • Speaking with care home staff of participating homes* - they will have received training on the study so will be able to tell you more and also provide you with study information booklets.
  • Contacting the Research Team directly - we are happy to speak with you on the phone, or answer queries via email. Alternatively, you can make an appointment to meet with one of our research nurses.

My family member/friend has dementia - can they take part?
  • Yes, they can. A Research Ethics Committee has carefully considered the PRINCESS study and given the research team permission to include people in the study who do not have the ability to make decisions for themselves.
  • Not being able to make your own decisions means that you 'lack mental capacity'.
  • Conditions such as dementia or other brain diseases are the most common reasons why people in care homes often aren't able to make decisions for themselves.

Why do we need to include people who have dementia or can't make decisions for themselves in the PRINCESS study?

  • People who lack mental capacity are often more vulnerable than those who are able to make their own decisions. Infections are more common and are more likely to become serious and difficult to treat in people who lack mental capacity.
  • Therefore, it is very important that people with mental capacity problems are included in studies like this, so that we know whether treatments work in this higher risk group.

How does someone without mental capacity take part?

  • When care home residents are unable to make to a decision as to whether they would like to take part in the study themselves, the research team instead asks a consultee to make a decision on their behalf.
  • A consultee can be, but doesn't have to be, the person's next of kin or the individual who holds the legal power of attorney for him or her. What is important is that the consultee is someone who knows the person well, such as a close family member or friend, and can make a decision based on what that person would have wanted if they had been capable of making the decision.
  • If you have been asked to be a consultee for a care home resident for the purpose of the study, and require further information, please do speak with care home staff or contact the research team. They can provide you with a consultee information booklet and answer any questions which you may have.
  • It is ok if you have been approached to be a consultee for a care home resident but do not feel able to make that decision. The research team can approach another appropriate person to act as their consultee, or if no one else is available they can ask an independent health professional such as their GP.