''I've never been a problem patient": service users' experiences of end of life care

First published: 09/05/2019 | Last updated: May 20th, 2019

This research forms part of a larger study exploring current service responses to people who have both problematic substance use and who are receiving end of life or palliative care. Working with a community-voice organisation and various groups of healthcare practitioners, we are developing co-produced research in the overlap between the often disparate fields of end of life care and alcohol/drug use. In developing innovative methodologies that maximise how our research engages with and is shaped by people with lived experiences, we are aiming to learn more about the complexities of delivering end of life care to people with alcohol and other drug problems.

We have developed a ‘person-centered evolving qualitative research approach’ that aims to maximize genuine participatory involvement for communities of interest. By developing a range of participatory opportunities for ‘experts by experience’, we are designing, implementing, analysing and disseminating research to include a diverse range of people.

This presentation reports some of our early findings and aims to highlight the critical need for support for people with alcohol/drug problems who are facing the end of their lives. Furthermore, we will also explore our original participatory approach to the research process and evaluate how useful this framework is for engaging on a more genuine level with people facing the end of their lives.

Acknowledgements: This research is funded by the Big Lottery Fund.

November 2017


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Dr Joanne Ashby