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Residents, family & public

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Residents, family & public

Research is not just for researchers. The public can be involved too. The best interests of care home residents are at the centre of all research in this sector.

Written by care home staff and researchers, our case studies provide real life examples of challenges and lessons learned by those involved in research. They help describe how others have approached particular challenges, such as acquiring consent, involving care home managers and gaining staff buy-in.

The studies also illustrate the short-term and long-term benefits to care homes and help staff to understand what is involved.

Links to organisations, resources and other useful information.

1. Residents, family and public

As a resident, carer, family member or as a member of the public you can help research. You can participate in a study, you can give your views or you can actively get involved in shaping future research.

Every member of the public diagnosed with some form of illness, dementia or neurodegenerative disease should have the opportunity to participate in research, irrespective of where they live. This website is designed to help researchers and care homes prepare and deliver more research in care homes and increase the opportunities available for residents to become involved. This site only provides a basic amount of information for residents, family members and carers. More information can be found using the links on the side of each page.

Residents, carers, family members and the public can be involved:

  • By volunteering to take part in a research study that interests you
  • As a member of the public working with research professionals and clinicians to help shape research and influence research priorities.

 

“It is so important for people to get involved in research. The main benefit of taking part is the opportunity to contribute to something which may help others. If people don’t take part in research then we can’t improve treatments for future generations.”

Alistair Taylor, former research manager for Bath Royal United Hospital

2. Understanding research

There are many questions about health, illness, the approaches of care and the effects of treatment for which there are no clear answers.

The aim of research is to find better ways of supporting residents, keeping them healthy as long as possible, and improving their quality of life.

Research in care homes helps:

  • understand which treatments or care method works best and when and how they should be applied
  • improve the quality of life for people living with a long-term illness
  • diagnose diseases or other problems
  • prevent diseases or at least reduce the number of people who get them
  • reduce the burden of illness and disabilities for individuals and families
  • identify gaps in knowledge related to specific treatments or conditions
  • collect people’s views on how care should be provided and prioritise that research
  • improve the quality of care and service provided to them; identify problems related to the treatment or service they are offered
  • support family members and carers by sharing helpful information and by understanding the wider effect of dementia on family and friends.
  • encourage close working between residents, staff and relatives, to everyone’s benefit.

When care home residents volunteer to take part in research studies often their reasons are personal. However the most common is the wish to contribute to improving services for themselves and / or those who come after them.

TYPES OF RESEARCH

There are different types of research but at the centre of all studies should be an ethos of respect, dignity and confidentiality.

Qualitative and quantitative studies

In simple terms there are two approaches to carrying out research; ‘qualitative research’ which uses in-depth interviews, focus groups or questionnaires to collect, analyse and interpret data on what people do and say, and ‘quantitative research’ which uses statistical methods to count and measure outcomes from a study. They often get used together in large studies.

Observational studies

Observational studies are a different form of research. In observational studies researchers investigate what happens to groups of people. They may also include interviews with care home residents, their families or staff members (with their consent, of course), or the collection of information such as blood pressure, weight, severity of illness, medicines taken.

Trials/intervention studies

There are different types of research to get involved in. Trials can test whether certain therapies or activities have an effect or are safe to use, or test drug’s effectiveness in treating a disease. These trials are sometimes called ‘intervention studies’. This research aims to test how beneficial treatments or therapies might be for people.

  • Treatments are tested on participants in strictly controlled ways to ensure safety and clear results.
  • Most studies need many participants because they aim to find out what treatments are likely to be most helpful for the largest number of people.
CRITERIA FOR BEING INCLUDED IN A RESEARCH STUDY

Research studies often recruit many people as participants, but they have to fit the eligibility criteria in the research design of the study.

These criteria may include the type of disease, history, age, gender, ethnicity, and so on, and may need to be very specific and can sometimes seem quite narrow. This is necessary because clinical research measures changes that are very precise and have to be carefully controlled so that the research results are as clear and informative as possible. So even though you may be interested in taking part in a study, if your details do not fit these narrow criteria you would not be eligible to take part. For example, a study may be seeking men or may be seeking people who have never been smokers.

It is important to note that anyone choosing to join a study can withdraw at any time.

The ‘Understanding Clinical Trials’ leaflet’ provides more information on eligibility criteria.

MORE INFORMATION

If you would like more information about taking part in research in a study take a look at the NIHR leaflets, ‘Understanding Clinical Trials’ and ‘Clinical Trials: What they are and what they are not’. Information on joining all types of research can be found at NHS Choices.

 

3. 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.

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 joindementiaresearch.nihr.ac.uk
  5. To find out about other research studies taking place across the UK, visit the Be Part of Research website
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.

“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

 

“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

4. Getting care homes involved in research

The NIHR Clinical Research Network is strengthening ties with care homes, through the Research Ready Care Home Network. This work has opened up new research opportunities and is helping to ensure that residents, staff and families have increased access and opportunity to participate in research.

In practical terms we are bringing together researchers, residents, family members and carers, and care home staff to form working in partnerships to ensure that information on research opportunities are shared and that valuable input is provided from all members of the partnership. The overall benefits are designed to be that:

  • Residents have more opportunities to become involved in research.
  • Researchers have improved access to suitable volunteers.
  • Care home staff is able to better care for, and support residents.
  • Families and friends may feel guilty or useless when their loved one is placed in a care home. Taking part in research which is designed to improve quality of life in that care home is likely to give them a new sense of purpose.

If you would like your care home to become involved, ask them to contact the ENRICH Project Team enrich@nihr.ac.uk or visit the Research Ready Care Home Network pages on this site.

Download a leaflet for your care home

5. Online 'Understanding Research in Care Homes' course

Welcome to the ‘Understanding Research in Care Homes’ course. This free, on-line education tool has been expertly planned by leaders from across the education, research and care home field. This course is provided by NIHR Clinical Research Network – Learn Online.

We hope you find this resource useful and hope that by the end of the course you will  have a better understanding of the background to research and the process itself – and perhaps consider supporting research in your care home in the future!

Register here to take the course now

After registering the course can be found here:

URiCH Care Home Staff Training Course

If you have any questions or difficulties please email: mick.mullane@nihr.ac.uk