Getting involved in research

There is a range of activities that care home residents, families, carers and members of the public are able to get involved in, with opportunity to choose what interests them.

You have the option of joining a particular study or helping to support research to ensure;

  • Research is done with members of the public, not to, about or for them, and;
  • That clinical research is relevant, useful and to the benefit of the public.

GETTING INVOLVED IN RESEARCH CAN INCLUDE HELPING:

  • Identify research that is important and relevant.
  • Develop information leaflets for residents and the persons closest to them.
  • Support a research project or advisory group as a member.
  • Develop accessible information and research news.
  • Support and promote good research.
  • Invite researchers to speak to groups.
  • Include research findings in newsletters or other material.

GETTING ACTIVELY INVOLVED CAN LEAD TO:

  • More relevant research questions being asked, resulting in more useful research.
  • More sensitive approaches to people who take part in studies as ‘participants’.
  • Helping to keep the research on track.
  • Greater opportunities to share research news.
  • Getting involved in the research process or activity itself;
  • Making sure that research is relevant, useful and for the benefit of the public.

BENEFITS

Care home residents, families, carers and members of the public may benefit from being actively involved:

  • By having a say in research and through sharing their experiences.
  • By getting research that is important to them, and learning more about research.
  • Through meeting new people – researchers, members of the public and other people from different networks.
  • By gaining confidence and new skills.
  • By having the chance to make a contribution.

For members of the public who were carers but whose relative or friend has now died, taking part in research is one way of gaining a good outcome from what has often been a black time. This sense of gaining good from bad is very therapeutic and can benefit the former carer in their post-bereavement phase, or whenever the time is right for them.

“If you were the main carer at home for someone who is now a resident in a care home, your deep knowledge about them and the experience you gained in caring for them would be invaluable to share with researchers. You may also have become the ‘voice’ of the resident and your views are important”.

Barbara Pointon, Alzheimer’s Society Ambassador 2015

REGISTER YOUR INTEREST

If you are interested in becoming a participant in research:

  1. You could ask your doctor to consider any studies that you may be eligible for;
  2. Search the NHS database;
  3. Talk to the manager of your care home, and suggest they make contact with the ENRICH team who will be able to talk to the care home about how it could become a part of the ‘Enabling Research In Care Homes’ pilots currently happening in various places across England.
  4. If you are interested in participating in dementia research, you can register on www.joindementiaresearch.nihr.ac.uk
  5. To find out about other research studies taking place across the UK, visit the UK Clinical Trials Gateway www.ukctg.nihr.ac.uk

“I firmly believe that being and feeling involved in research can help the carer (and resident) channel anger, grief, loneliness and isolation into something that can be really healing. It can truly help with the acceptance of the disease and its sometimes devastating effect upon families and relationships.”

Sue Berkeley, Carer and Join Dementia Research Champion

My research journey by Brin Helliwell

Brin Helliwell is a stroke survivor – hear his story in this short film, how he got involved in research and its impact on his recovery.

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