Some groups of patients and their families have poorer outcomes at the end of life and some underutilise specialist palliative care services. The way we need to deliver services may need to develop to meet their needs in an appropriate way.
We know that it is more difficult for people from ethnically diverse communities to access or obtain information, support and services that will meet their needs. LOROS is embarking on a number of projects that will focus on these issues.
Current projects
Thinking Ahead: Exploring and understanding experiences and decisions in end of life care planning with patients and families from Black, Asian and Minority Ethnic backgrounds.Read more here.
Thinking Ahead about Medical Treatments in Advanced Illness: Exploring the perspectives of minority communities and the professionals that work with them about resuscitation decisions.
This study aims to explore public and professional views and experiences of end of life care planning, with a focus on making decisions about resuscitation, to identify barriers and enablers and person-centred outcomes to such discussions and provide evidence for training professionals.
Lucy Taylor, a researcher on the Thinking Ahead project, undertaking an intercalated degree in Medical Research with the University of Leicester, has put together a poster outlining the study which can be viewed here.
Aage ki soch (Thinking ahead): A qualitative study understanding and addressing patient, family and professional uncertainties about planning for end-of-life in South Asian communities.
This work aims to understand how health care professionals can support patients from Black, Asian and Minority Ethnic (BAME) communities and their families in planning their care in the last year of life.
Other projects
Humara Safar (Our Journey) is a moving story of a South Asian family living in Birmingham coping with an elderly member of the family who is dying with cancer. The story shows the impact on individual members of the family and how each receives support. The roles of community and specialist palliative care nurses are shown and the support gained at a hospice day therapy centre. This 30 minute film, which is in Hindi with English Subtitles. aims to help South Asian families navigate the impact of advanced illness and get the support they may need. It explains what ‘palliative care’ is about and takes some of the mystery out of services that provide support at this difficult time. It was developed by the South Asian Palliative Care Awareness Arts project in the West Midlands led by Professor Faull, funded by the National Lottery and introduced by the then project manager Dipti Thakkker.
We’d like to hear any feedback on the film and how you make use of it. Please do email us with any comments at research@loros.co.uk
Broadening Horizons project in Leicester City
Watch a video LOROS made with volunteers recruited from communities in Leicester.
PROCEED: Professionals responding to cancer and ethnic diversity.
An evidence based multimedia training package. Download a PDF document on the project.