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MacArtney, John I.; Greenfield, Mari; Hudson, Briony and Borgstrom, Erica (2024). Identifying research themes for social sciences and humanities research into dying and palliative care: Secondary analysis of James Lind Alliance refresh - Protocol. Health Open Research.
DOI: https://doi.org/10.21955/healthopenres.1115015.1
Abstract
The James Lind Alliance (JLA) is an initiative that brings patients, carers and clinicians together in Priority Setting Partnership (PSP) exercises to identify and prioritise research questions for a range of healthcare issues. In 2015 JLA and Marie Curie identified the top research questions for Palliative and End of Life Care (PEOLC) research. In 2023-24 they are undertaking a full ‘refresh’ of these research priorities, which includes a national survey and series of engagement events with public, clinicians and researchers. In 2015, the research priorities focused on care settings, access to care and care practices, training, and clinical outcomes. Whilst all useful to explore, these priorities were not immediately amenable to social science and/or humanities-oriented research, which is rich area of expertise for understanding and improving experiences of dying, palliative care and the aftermath.
This protocol sets out the methods that were used to achieve the following aim: to identify the issues for social sciences and humanities research into dying and palliative care, based on a secondary analysis of data from the JLA PSP.
The objective of this project is: Identify research themes for social sciences and the humanities based on the data collected through the James Lind Alliance Priority Setting Partnership refresh.
The protocol sets out the methods used to answer the following research questions:
1. What social science and humanities research issues can be identified in the data gathered by the JLA priority setting survey?
2. What social science and humanities research themes can be generated from these identified issues?
3. What exemplar research questions relevant to social science/humanities research can we identify for each theme?