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There are many ways people working in care homes can be involved with research. By supporting research you can help improve the quality of life for residents. Supporting research can range from distributing information about research to helping conduct studies.

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. Understanding Care Homes

This toolkit provides a simple overview of the different types of research, the different ways a care home team can be involved, and what this means in practice. It also provides guidance on how to become involved with research, and how to prepare for it.

 

“Research is a good idea. Anything looking into dementia is important to patients, staff carers and family, as it gives insight and lets them know what work is being done to change and improve dementia care; giving them hope.”

Sharon Osborne, Care Home Manager

2. Understanding research

The professionals that carry out research in care homes and with residents are sometimes the same GPs, hospital doctors and health and care professionals who provide services in local health centres, local authority offices and hospitals. In other cases they will be academics based in universities or other research institutes who will be working in partnership with health and social care providers and professionals. The research they do aims to improve the quality of care and the quality of life for all people living and dying in care homes.

The aim of care home research is to:

  • improve the quality of life for people living in care homes
  • diagnose diseases or other health problems in residents
  • prevent diseases or at least reduce the number of people who get them
  • reduce the burden of challenging later life illnesses for residents and their families
  • collect peoples’ views on how care should be provided
  • support care home staff and family carers
  • enhance the network of caring professionals and their interaction both between themselves and the nursing home staff, residents and families
  • introduce the idea that residents, even those with cognitive impairment, can have an effective voice and make a difference to their everyday lives

Research should be carefully managed, and should always be conducted with respect for participants and carried out as safely as possible. There are many different types of research covering a range of activities, from working in a scientific laboratory to carefully noting patterns of health and experiences of disease and developing new treatments or studying care practices.

Health and social care research investigates many different problems, from illness, disease, and disability to the way that health and social care services are decided and provided, including in care home settings.

WHY CARRY OUT RESEARCH?

Older people being cared for in all settings may benefit from research findings and may also benefit from participation in research. Research helps find answers to the things that are unknown, filling gaps in knowledge and changing the ways that people work. This may lead to treatment, care and residents’ quality of life being improved. Not only this but insight gained from research could help to allay any possible family worries about the quality of care being offered to their loved one.

WHERE IS RESEARCH CARRIED OUT?

There is a wide range of different types of research into health and care. Much research is carried out in the NHS, but some takes place in universities and research institutes, and in social care services in the private, voluntary and local authority sectors. However, this toolkit focuses on increasing the amount of research in care homes and encourages more studies to recruit care home residents. Most care home or resident focused research will be conducted in the care home setting.

HOW IS RESEARCH FUNDED?

Research can be funded by a variety of different organisations, and often working in partnership with one another. They include:

  • the NHS, through the National Institute for Health Research (NIHR) or other NHS sources
  • the Medical Research Council and other Research Councils
  • the Department of Health and Social Care and other government bodies, at central and local government level
  • charities with an interest in research e.g. Age UK, Alzheimer’s Society,Parkinson’s Research UK, Stroke Association
  • pharmaceutical and other healthcare companies
  • care home or social care businesses.

However the research is funded, the people who take part in it are protected in the same way. Read more about how studies are regulated on the NHS choices website.

TYPES OF RESEARCH?
Qualitative and quantitative studies

In simple terms there are two approaches to carrying out research. ‘Qualitative research’ which uses in-depth interviews, observations, focus groups or questionnaires to understand what people do and say, and document their experiences. ‘Quantitative research’  seeks to count and measure outcomes from a study using descriptive and statistical methods. Data collection methods that can capture qualitative and quantitative information are often used together to maximise understanding of what is being studied.

Observational studies

Observational studies are a different form of research. In observational studies, researchers observe what happens to groups of people. This may involve interviews with care home residents, their families or consenting staff members, and collection of data often over time, like blood pressure or weight.

For example: Some care home residents are admitted to hospital as an emergency whilst others with apparently the same problem are not. To understand why this difference occurs, researchers might interview staff and residents, examine medical records, talk with family members and seek information from the hospital or GP.

Trials / intervention studies

There are different types of research to get involved in. Trials can test a drug’s effectiveness in treating a disease, or test whether certain therapies are safe to use. These trials are sometimes called ‘intervention studies’. Not all of them involve drugs, they could for example, involve exercise or ‘talking’ therapies.

People who join trials are chosen at random to try the new treatment or therapy. Some receive the treatment or therapy and some do not. Where possible the researchers, study participants and care home staff are kept blinded (not told about) which treatment they are receiving. This helps to reduce the potential bias that knowing about receipt of treatment can cause, particularly in studies where the participants or staff are asked to provide data for example about quality of life, behaviours or levels of pain or discomfort. It may not always be possible to do this though. Both groups are followed up and results are compared. The name of this type of study is ‘randomised controlled trial’.

For example: There is some evidence that increasing exposure to light in the morning helps people with dementia sleep better at night. To see if this theory is true, a trial could compare sleeping patterns in two randomly chosen groups. One group would get the light exposure for a fixed period of time every day; the other would carry on with their everyday life, as normal.

For further information visit the NHS Choices website.

“Care home staff and residents need to become more involved in research if the quality of life of people with dementia is to improve, and a new toolkit shows them how they can.”

Prof Jill Manthorpe, Director of the Health and Social Care Workforce Research Unit at King’s College London

 

3. Understanding researchers

Care home managers and staff are natural researchers. It may not be termed in that way, because they ‘think of something, try it out, and if it goes well they try it again, change it or forget it’, and in simple terms this is what research is all about – organised curiosity.

Evidence consistently shows that the experience and expertise of care home staff is often overlooked by researchers. Research is improved when care home staff are involved in setting questions, deciding how to collect information and interpreting what is important, from the perspective of residents and those people that support them. The NIHR ENRICH Research Ready Care Home Network supports this vital input to research.

Getting involved in research can potentially lead to benefits for your residents, staff and your business.

POTENTIAL BENEFITS?

Directly and indirectly enhances the quality of life for residents

For example it can

  • Provide additional stimulation as residents take part in a new activity or have someone new to talk to.
  • Give control back to residents, allowing them to feel like they are contributing to their future and the next generation.
  • Living in a nursing home can make you feel invisible to the outside world. Being involved in an ongoing project can renew a resident’s self-esteem and sense of worth.
  • Stimulate residents to take an increased interest in their own health and wellbeing.

Potential benefits for care home teams

For example:

  • Staff can gain additional training, support, discuss new practices, learn new skills and network with other care homes. Care homes are busy environments, and so the level of involvement needs to be managed to suit the individual circumstances of the home.
  • Increase job satisfaction and wellbeing for staff; creating an atmosphere which encourages excellence and improvement.
  • Link care homes and provide them with feedback about common problems and if their experiences and issues are similar to those of other care homes.

Provides your home with the latest information on science and technology advances

For example, research can

  • Enable care home owners and managers to learn of new developments, which can contribute to delivery of improvements in the home’s business and marketing plans.
  • Help demonstrate to the public that the care home sector is actively focused on good care and improving delivery.
  • Encourage researchers and funders to address issues that are of greater interest to them such as symptom management and end-of-life care.
  • Improve contact between care homes and other local health and care services. This can lead to a better understanding of care and counteract stereotypes.
  • Provide an effective voice for residents, families and staff whose views may have been previously unheard.

Being involved in research can be as simple as distributing information about research studies or as engaged as helping to deliver part of a project. The care home’s involvement can be planned around the time you have available and shaped to suit how you work. This can be achieved by direct contact with researchers, or through participating in the NIHR ENRICH Research Ready Care Home Network.

 

 

“For me, participating in research is a win win situation. Researchers get the information needed for research and we get: resident and relative participation, well informed staff who feel motivated, included and have a sense of self-worth, and it’s a great marketing tool for our home, even the CQC were interested and impressed to learn of our participation and involvement”

Cath David, Manager, Well Springs Nursing Home

4. Protecting residents

Almost all research projects must gain ethics committee approval and meet the legal requirements outlined in the Mental Capacity Act to ensure they protect residents and staff. This is in addition to other criteria applied by the funding body to ensure the research is appropriate and necessary. These processes are designed to protect the dignity, rights, safety and wellbeing of care home residents and those participating in research.

ETHICS

There are national systems for gaining permissions to conduct research, and both the NHS and local government have research governance systems. These decide whether research is ethical or if it is of value to the sector. They study research projects carefully and look for potential risks to people who take part in them.

They require researchers to ensure that clear information is provided for those taking part in research. They also require all researchers to obtain informed consent from research participants, when they have the capacity to give it and have strict processes for what must happen for someone to participate in research who cannot give informed consent.

No research can occur in the NHS or through local authority social care services without approval from an ethics or research governance body.

CONSENT

Residents of care homes in England and Wales are also protected by the Mental Capacity Act (MCA) 2005 if they are unable to make decisions, for example, if they have severe dementia or brain injury. This sets out how an individual’s capacity to understand and give consent must be decided.

It requires those with care responsibilities to always act in the individual’s best interests if they lack the capacity to make the decision to take part in the research. It also requires that the researchers seek advice from people who know the resident well – ‘consultees’, who know what the residents wishes would be if they had capacity. Even if they lack capacity, residents should also be involved in this process, and researchers should always seek assent from the resident, this can be given verbally. An overview of the Mental Capacity Act can be found at Social Care Institute for Excellence ‘At a glance’ resources. Remember that those involved in a study can withdraw at any time.

It is also important that the owner / head office (where applicable) of the care home be made aware of the research and they should also agree to the home’s participation in the study.

WHAT TO EXPECT FROM RESEARCHERS

Residents, their family and friends, and care home staff should expect researchers to:

  • Build a good relationship with the manager and staff, and get to know the home.
  • Discuss compensation for time and provision of training.
  • Ensure that someone explains the study to all the staff as well as the manager.
  • Allow plenty of time for questions to be asked about the study before any research starts.
  • Make sure the researchers give enough information to staff and residents without bombarding them.
  • Ensure that material for residents takes account of possible problems with sight or hearing. Further information can be found in the Research with deaf people methods review and the Adult social care services for visually impaired people review.
  • Provide a simple leaflet on who the researchers are, where they are from and what they will be doing.
  • Be honest with the manager and staff at the beginning about the amount of time, resource and involvement required.
  • Be respectful of people’s time.
  • Highlight the benefits but also the expectations of being involved.
  • Provide care homes with incentives to join the study. Not money necessarily (although this helps), but knowledge, feedback, skills and/or resources.
  • Discuss and agree anonymity and confidentiality.
  • Discuss the process of obtaining consent from participants or seeking the views of attorneys/ personal consultees/personal nominees.
  • Discuss in advance what would happen in the event that a member of the research team had concerns about a resident’s care.
  • Make all the GPs who have patients in this home aware of the study if appropriate.
  • Behave ethically at all times. Unethical behaviour should be reported to the lead researcher and / or appropriate regulatory body or appropriate agency.
CONCERNS ABOUT QUALITY OF RESEARCH / RESEARCHERS

Care home staff should not tolerate disrespectful, unsatisfactory or unethical behavior by researchers e.g. being rude to a resident or failing to provide sufficient information. If they witness it or have concerns they should inform the research leader, or the research sponsor, as soon as possible

See also advice in “Getting involved in research” below.

5. Getting involved in research

There are several different ways to become involved in research. This section outlines who to contact and provides some thoughts on useful questions you should consider before getting involved in research.

A great deal of research is being done in care homes, and this will, we hope, improve the way care is delivered and the availability of treatments, and will go on to support and improve the overall health and wellbeing of residents. The ENRICH toolkit hopes to encourage stronger partnerships between researchers, care homes staff, residents and their families so that there is more research in care homes.

There are a number of ways in which care homes and residents can get involved or partner research:

  1. Join the National Institute for Health Research (NIHR) ENRICH Research Ready Care Home Network – participation will give you access to local researchers to influence and advise on future research, and provide the opportunity to become involved in important local and national research.
  2. Researchers often advertise for people who use local NHS services to become involved in their projects. Look out for advertisements in newspapers, GP practices, libraries or community centres.
  3. You could approach researchers. Your local NHS Trust, Clinical Commissioning Group (CCG) or University might have a research programme in which you could get involved. Their contact details will be in your local telephone directory and on the internet. Ask if they have a Research and Development (R&D) Manager or lead person for R&D, or contact university researchers directly about studies they are conducting.
  4. Some GPs and other health and social care professionals run research projects of their own, often with the support of a local primary care research organisation. It may be worth making enquiries at your local GP surgery or care agency.
ADVICE

Before making contact here are a few essential factors that you should consider before getting involved in research:

  1. Have you discussed this with the residents and their families?

We know that there are mixed opinions on research. Some people may be anxious and/or reluctant, particularly if they believe they are not being fully engaged and consulted, while others will be very positive about the benefits. By showing interest you are not committing the residents to any involvement. However, it is advisable to ask what the residents think about research. This will then enable the local clinical research network to provide appropriate support and literature.

  1. Be clear about why you want to become involved, and what you hope to achieve.

There are many ways to support research. Collaborating with your local clinical research network will allow you to be clear as to your preferences – for example, what types of research are you able to support, how much time are you able to commit, what do you want from the researchers?

  1. Do your own research into the subject.

There are hundreds of websites and information sources that will talk about research and the benefits. Most are aimed at NHS patients, however many of the same issues are relevant to care homes and residents. Before agreeing to become involved in any research, take a look at some of the links in the right navigation bar.

  1. Familiarise yourself with the language.

Researchers can speak a whole different language, full of jargon and acronyms. Try to familiarise yourself with the language being used, stay grounded in the real world of the care home and do not be afraid to ask questions or ask the researchers to rephrase things you do not understand or which have too much jargon. Researchers must comply with many rules and regulations, particularly around ethics, governance and safety of research participants. Speak up and remember that researchers are subject to similar rules as care home staff, and are working to the same standards of practice such as the Mental Capacity Act. Should you need to understand the terminology, you can use this Jargon Buster. Changes in the Disclosure and Barring Service mean that you may want to ask more about how the researchers have been checked and are supervised (see CRB checks ).

Also see: NIHR Training course for care home staff

“ENRICH has been a timely initiative. One particularly important aspect has been attention to the staff working in care homes. Researchers are reminded that they are hugely important to the lives of residents and staff often feel responsible for their well-being. Carrying out research in care homes often means asking staff to do a lot and the ENRICH initiative fully acknowledges this.”

Jill Manthorpe, Professor of Social Work, King’s College London

“At St Leonards we support research projects and have been involved in a couple which has enabled staff to learn more about supporting people with dementia and relatives understand dementia is an illness that affects everyone. By supporting research projects like Provide everyone gains support for the residents which supports staff and relatives understanding, developing staff to gain confidence in what they are doing. The Provide team have worked with us and supported the residents and relatives. The team communicates well with everyone and are flexible to come when we have quieter times, it is good to be supported and valuable to have independent feedback. At St Leonards we hope by being involved in projects it will help support others and grow everyone’s knowledge to do the best for our residents. Relatives will tell me they hope by research it will continue to find better understanding and solutions for people living with dementia.”

Teresa Warren, St Leonards Residential Home (Finalist for Care Home of the Year award)

6. Questions to ask researchers

When considering getting involved in research it is important to find out as much as possible about the study, and those conducting it. This section of the toolkit provides care homes with guidance on the questions to ask to ensure the best possible outcomes.

The researchers may be new to working with care homes, and they may rely on you to be clear about what is and is not possible and acceptable. This should be done well in advance of starting the study. When meeting the researcher, we strongly advise you to consider asking the following questions to ensure you are happy to take part in the research study and that it is appropriate for your home:

 General questions
  • What is the aim of the study and how will it help residents?
  • Who will benefit?
  • Who is funding the study?
  • What can I influence and what has already been decided?
  • Who will and won’t be able to take part in the study (inclusion and exclusion criteria)?
  • What intervention or treatment will residents or staff receive if they take part in the study?
  • What are the risks to their taking part? (e.g. distress, discomfort, raised expectations about what the research will do for them)
  • How long is the study expected to last and how long will residents be asked to take part?
  • How long will it be before the results of the study are known and how will you share the findings with residents, care home staff and family?
  • If I get involved, do I have any legal responsibilities?
  • Is there any compensation or funding provided for our input?
  • Can I state some preferences around timing of visits, length of visits, etc.?
 Questions about resources
  • How much staff time will be needed?
  • What extra tests and/or appointments will residents have?
  • Will staff need time for training, information sessions and data collection?
  • Will any costs be covered for participants? (e.g. staff compensation of work hours)
  • Will my staff have to complete questionnaires or collect data?  How long will this take?
 Questions about an intervention and its effect on residents
  • If a treatment is involved, what are the possible side effects of the treatment?
  • How could the treatments affect the residents physically and emotionally?
  • How can you guarantee the safety of my residents and staff?
  • What if I witness something going wrong with the study or with a resident? What should I do?
 Questions about communication about the study
  • Who can I contact if I have a problem? Will someone be available 24 hours a day?
  • How will you tell me the results of the study?
  • Should a resident decide to stop taking part in the study due to their condition worsening or if they feel the treatment is not helping them? Can they choose to leave at any point?
  • How will you keep my staff up to date about the study?
  • How will you keep participants in touch with progress?
  • What will happen if a participant stops the study treatment or wants to leave the study before it ends?
  • Who can I go to if I am unhappy with the researcher’s work?