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Key messages from the Thinking Ahead Study: Barriers and Enablers to End of Life Care Planning with Ethnically Diverse Patients, their Family and Health Care Professionals

Key messages from the Thinking Ahead Study: Barriers and Enablers to End of Life Care Planning with Ethnically Diverse Patients, their Family and Health Care Professionals

01 May 2022

Zoebia Islam, Senior Research Fellow LOROS Hospice, East Midlands

The NIHR Research Design Service (RDS) supports projects in the design stage, generally until final submission for funding, helping researchers to submit their best possible application. Of course we stay in touch with teams but it is rare that we get to see and support the outcomes of those projects. As impact and knowledge mobilisation become a crucial element of projects, even at the design stage, it's nice to be part of the dissemination effort of the findings to help ensure they don't just sit on the shelf. Our guest blogger this month talks about a study that touches on many important issues looking at end of life care and under-represented groups and making sure their research has a lasting impact.

'Thinking Ahead' study

The ‘Thinking Ahead’ (NIHR HS&DR 17/05/30) research study explored how terminally ill patients from ethnically diverse backgrounds, and their family care givers, think ahead about deterioration, dying and engaging with healthcare professionals to optimise care. This research sought to understand more about the nature of people’s preferences for end of life care planning and how current policy and practice 'fits' with diverse cultural values. There has been little previous exploration of the experiences of ethnically diverse people with advanced illness and their families in relation to their thinking ahead about deteriorating health and end of life, and in their approach to planning for this. This research added to the limited evidence base by conducting a 35-month qualitative study where 18 longitudinal patient case studies comprising 103 interviews with ethnically diverse patients, their family carers and health care professionals were conducted. This was accompanied by 19 separate interviews with bereaved family carers.

In order to share our learning about the experiences of the patients and their family care givers with those professionals on the frontline of care delivery (particularly at end of life), eight fictionalized stories were developed by Andy Barrett for Excavate to recount examples of the types of considerations that impact on people. Each story is derived from a range of experiences that have been related to us by real people and their families in the ‘Thinking Ahead’ research study. You can access the stories along with a free downloadable learning guide.

One of the key messages arising from this research resonates with the Zulu greeting Sawubona which literally translates to ‘I/we see you’. Where people feel known, especially in respect of any ethnically- or culturally-driven values or stances, greater trust can be engendered and can lead to care that is more relevant, timely and personalised. One way of doing this is for health care professionals to utilise skills in authentic curiosity and cultural humility to gain trust and holistic insight. Many participants felt alienated and that they have little ‘purchase’ within a system that does not recognise them.

A key output from this work is a free e-learning resourcewhich has been hosted on the Health Education England End of Life Care for All (e-ELCA) e-learning programme ‘Engaging effectively about advance care planning with people from ethnically diverse backgrounds’. This session aims to build professional confidence and expertise in supporting people from ethnically diverse backgrounds to engage in thinking ahead about deterioration and dying at a time and at a level with which the person feels comfortable.

We want our findings to reach a public as well as an academic audience and in order to do that we are producing videos about our key findings. These are being developed with the support of the RDS and you can see our first one exploring the importance of ‘Sawubona’.

This research has also highlighted the need for future work in which researchers collaborate with under-served communities and develop an asset-based approach which allows the co-production of information which is both accessible, acceptable and appropriate to improve end of life outcomes. The RDS is key in supporting us to develop this work. If you have research any ideas and want to submit an application for funding, contact your local RDS for support.

If you'd like to find out more about how to embed equality, diversity and inclusion into your research project then have a look at the RDS EDI toolkit. To help you engage with and build sustainable community relationships dip into the new community engagement toolkit.


This study/project is funded by the National Institute for Health Research (NIHR) HS&DR. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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