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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
  1. S Sivell1,
  2. J Baillie2,
  3. J VanGodwin3,
  4. A Byrne1 and
  5. A Nelson1
  1. 1Marie Curie Research Centre, Division of Population Medicine, Cardiff University, UK
  2. 2School of Healthcare Sciences, Cardiff University, UK
  3. 3DECIPHer Centre, Social Science, Cardiff University, UK


Introduction 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.

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

Methods 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).

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

  1. Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.

  2. Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.

  3. Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.

  4. Spiritual and psychosocial needs: providing emotional and psychological support for patients carers and professionals.

Conclusions 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.


  1. . Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.

  2. . Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care. Summary ReportJuly 2016. Available from

  3. . Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015). Final Report15 January 2015. Available from (Accessed: 30 May 2018)

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