£100k funding boost to look at the impact of end of life care in the UK
20 October 2020
Researchers in the School of Health and Social Care at London South Bank University (LSBU), in collaboration with the Northern Care Alliance (NCA) and University of Manchester (UoM), have been awarded a £100k grant from the Burdett Trust for Nursing. The grant award is to support a joint study evaluating end of life and bereavement care in the UK, before and during, the Covid-19 pandemic.
The joint research project - which is set to run for one year, from 21 September 2020 until October 2021 - will assess the effectiveness of the SWAN model of care and the recent deployment of ‘Cygnets’, or additional, temporary support workers, to administer care in homes.
The SWAN model of end of life and bereavement care originated in Greater Manchester hospitals but is now used in many different settings such as care homes, coroner’s offices and police services.
Providing end of life and bereavement care became particularly challenging during lockdown due to the necessary cessation of visiting and infection control measures.
To tackle this problem, Northern Care Alliance developed a non-specialist team involving redeployed and temporary staff, known as ‘Cygnets’, to deliver aspects of the Swan model of care. The term 'Cygnet', normally used to describe a young Swan, was used in care homes to identify these additional team members, as a way of letting people know that it was not their usual area of expertise.
The Cygnet role supplements the existing care and support administered to patients, their families and staff in the last hours and days of life, with the aim of preventing people from dying alone. Each Cygnet’s role is unique and draws on a variety of skills, ranging from pastoral care - comforting and staying with the person who is dying - to making memories and facilitating virtual communication with the patient’s family.
The main purpose of the research project is to understand the beneficial effects of the SWAN/Cygnet model for end of life patients and the potential transferability of this model of care to other settings.
Principal Investigator, LSBU’s Professor Alison Leary MBE, said: “We are very privileged to have been given this opportunity to evaluate the impact of such an important service. There is only one chance to get end of life care right. By understanding how the Swan model works and what impact it has, we can ensure that more people have access to it.”
Fiona Murphy MBE, Northern Care Alliance (NCA), said: “I am overwhelmed and proud to have the impact of our Swan model evaluated through independent research. For many years I have witnessed the impact through my own and my teams’ experience and observed its transferability. I feel privileged to have been awarded this funding and grateful for the opportunity to value our future services, staff and the people we support through their grief journey.”
Heather Iles-Smith, Chief Nurse for Research, Northern Care Alliance (NCA), said: “I'm absolutely delighted that the NCA has been awarded this prestigious funding to undertake such important research to evaluate the effectiveness of Swan and Cygnet end of life care initiatives. As clinicians, it's so important that we not only draw from the evidence base, to inform our practice, but we also add to it when we develop new and innovative care pathways and clinical practice. This allows us to ensure that the care is effective and of benefit, and allows others to learn from our innovations.”
Dr Laura Green, University of Manchester, said: “Evaluating end of life and bereavement care is vital if we are to develop compassionate, culturally sensitive and equitable services across the NHS. As a palliative care nurse and researcher, I recognise that it can be challenging to capture the essence of how services and individuals work together for the benefit of patients and their families. I am really looking forward to working with a team of inspiring academic and clinical partners to evaluate the SWAN model of care.”
The end of life care research project runs from 21st September 2020 to October 2021.