41 ‘We should not shy away from asking what it is that patients want’ a supplementary qualitative analysis of the jla peolcpsp free text data

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Palliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.


To undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.


A supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).


Approximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:


We identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.

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