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Both sides of the fence: using action research to improve end of life care for prisoners

Project: Funded ProjectResearch

1/06/1331/05/16

England and Wales has the highest prison population in Western Europe, and older people constitute the fastest growing section of this population. There are currently more than 10,000 prisoners over the age of 50; 3,500 of these are over 60 and around 100 are aged 80 or over. A high proportion of older prisoners have multiple, complex health and social care needs, and increasing numbers of them will die in custody.

The ‘Both sides of the fence’ study is a 3-year action research study funded by Marie Curie. The aim of the study is to develop a model of high quality care for prisoners who have a life-limiting illness or end of life care needs. This model (or elements of it) can then be used across a range of prison settings.

The study is designed in three phases. Phase 1 is a detailed exploration of end of life care in one prison that has a high population of older and disabled prisoners. Interviews and focus groups have been conducted with healthcare staff, prison officers and prisoners, as well as staff from primary care and specialist palliative care local to the prison. We have also shadowed key prison staff on day and night shifts and collected documents and other data pertaining to end of life care in the prison. In addition we have undertaken a case study centred on a prisoner approaching the end of his life. Data analysis has been undertaken using a thematic networks approach.

In Phase 2 we have worked closely with staff in the prison to identify areas in which end of life care could be improved, and to implement and evaluate changes to practice. A number of different strands of work have been undertaken, involving healthcare staff, prison officers and older prisoners. We have also conducted an audit of palliative care in the prison, using the Macmillan Adopted Prison Standards (MAPS) tool.

The final phase of the research consists of deliberation with stakeholders to share and disseminate the findings and develop recommendations for policy, practice and further research. The study will be completed at the end of May 2016.