How does research inform hospice care?

In this blog:

• Overview
• What does research-active mean?
• Why is research important?
• Examples of our research studies
• Can you help with research?

Overview

Providing high quality and compassionate care is at the heart of what we do at St Barnabas Hospices (St Barnabas House and Chestnut Tree House). Participating in health care research helps us develop, improve, and provide the best quality of care to our patients and their families. Research also helps the people who work and volunteer for us to learn and grow their knowledge and skills.

Since 2020, we’ve regularly participated in national research studies, and we are proud to be known as a research-active hospice. (List of research active hospices (nihr.ac.uk))

What does research-active mean?

It means that we recognise the importance of using a research-based approach to deliver high quality care. Our clinical teams keep up to date with the latest scientific research, and we regularly get together to discuss the findings. When needed, this leads to changes in the way we provide our care.

Our research team

We have set up a new research team who keep up to date with the relevant research. They work with university research teams and other healthcare providers to develop research projects and find opportunities for our patients, families and staff to participate in research studies.

Why is research important?

The UK is a world leader in palliative care services, with the National Institute for Health Research (NIHR) carrying out over 1,000 cancer research studies in the last year. To improve the quality of life of people with terminal illnesses, hospices and community healthcare settings need to contribute to research. To do this, the NIHR has initiated a group, partnering with organisations such as Hospice UK, focused on Hospice and Community Research. This group aims to make the UK a global leader in palliative care research within five years, and we are proud to be a part of that.

What research means for patients

Being research-active means that patients and families receive the highest quality of care from St Barnabas Hospices, as our practice is driven by the latest research.

Examples of our research studies

CovPall Study – This project was set up to understand how hospices and palliative care services responded to the COVID-19 pandemic.  The results showed the problems faced by patients, families, and services. The study describes some of the challenges in detail and highlights how services were able to respond by adapting and innovating. The results of the study can be found here: King’s College London – CovPall Study

The MND (Motor Neurone Disease) Register – MND is a rare disease and there is a need for more effective treatments. This register aims to collect information that will help researchers improve care and treatments for people living with the disease. The information will also show how MND affects people over time so the right care and support can be provided. If you have MND and you are under our care, you will automatically be added to the register by the hospice team and you will be told about this. However, you do not have to take part and you can ask for your information to be securely deleted at any time. Read more about the study here: MND Register website

DIScOVER – Patients with lung cancer or respiratory disease took part in this project. It investigated how these illnesses affect peoples’ daily activities such as dressing, walking, shopping, and social events over time. The aim was to understand the difficulties people experience during daily activities better, and to learn how treatments and services can be modified and improved where needed.

Next steps

Research plays a vital role in providing the highest quality care for patients in hospices and healthcare settings around the world. By being research-active, every day we are working to improve the experience of our patients and their families. We will work with other hospices and universities to apply for funding, so that we will be a leading contributor to the generation and development of new research.

Can you help with research?

We are looking for people to join our Public and Community Involvement group and help drive and direct our research programme. We want to work with people who use or are interested in our services to help us understand what is important to you, our community. This will improve the relevance, quality and impact of our research, and ensure that it is focused on the needs and priorities of patients, carers and their families.

Who can get involved?

Maybe you can make an ongoing regular commitment to join a core group driving a specific research project. Or you might want to be part of a wider directory of people who can be called on as needed to offer insight or opinion on specific issues. Maybe you are a patient, or a family member of a patient. Or you might be a member of the wider community who cares about excellent hospice care being available in the Worthing, Adur, Arun and Henfield areas. Whoever you are and whatever your skill set, we are keen to hear from you!

Get in touch

If you would like more information about our research activities, or if you are interested in supporting our research, please contact the research team.