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 with dementia and other diseases 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.

“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 Social Care Workforce Research Unit at King’s College London

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 other government bodies, at central and local government level
  • charities with an interest in research e.g. Stroke Association, Parkinson’s Research UK, Alzheimer’s Society, Age UK
  • 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.

“Dementia is one of the greatest challenges of our lifetime, and I am proud that we are leading the world in fighting it.”

David Cameron, Prime Minister, February 2015

For further information visit the NHS Choices website.