Introduction
The Australian prison population is ageing and the need for palliative and end-of-life-care is increasing.
Aims/Objectives/Problem
There is no standardised national model of palliative care for Australian prisons and limited information about the capacity of correctional/justice health services to provide palliative care. The National Palliative Care in Prisons (PiP) Project was established to provide a holistic overview of palliative care delivery in Australian prisons. The PiP Project aims to improve access to best evidence-based, culturally-safe, high quality palliative and end-of-life care for people in prisons, through the collaborative co-design of a new National Framework for the Provision of Palliative Care in Australian Prisons.
This presentation will provide an overview of the complex ethical approval challenges in undertaking time-limited national palliative care research in an underserved population.
Methods/Procedures
A five phases mixed-method project. The project is currently seeking national Human Research Ethics Committee (HREC) approval to undertake the Gap Analysis to understand palliative care provision in Australian prisons. The data to be collected during the gap analysis includes: an organisational palliative care self-assessment survey, retrospective reviews of prison- and hospital-based medical records of people with palliative care needs who died expectantly in prison; and semi-structured interviews with key stakeholders. Data collection tools were collaboratively co-designed with project stakeholders.
Results/Findings
Despite National Mutual Acceptance Approval, the PiP Project requires an additional 25 HREC approvals across Australia. The sensitive nature of data pertaining to deaths in custody, and the over-representation of Aboriginal and Torres Strait Islander people in prison, due to systemic social and health inequities, necessitates that every ethical application requires full ethical committee review to obtain approval. This project has faced several challenges negotiating access to cross-jurisdictional data including the successful and meaningful engagement of important stakeholders, navigating complex and repetitive jurisdictional ethical approval processes, and securing timely access to data.
Discussion/Implications for practice
Commonwealth-funded projects have limited timeframes to access and collect national cross-jurisdictional data essential for quality, benchmarking, and the development of national perspectives. Essential ethical guidelines must be balanced with the need to collect cross-jurisdictional data within a limited timeframe.
Conclusion
Undertaking research with vulnerable populations is challenging. The input of key stakeholders is critical in successfully negotiating the necessary ethical and governance approvals.
Funding acknowledgement
National Palliative Care Projects Grant [4-E1QGPSQ]