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Jun 29, 2018

MASCC/ISOO Annual Meeting on Supportive Care in Cancer

15 / IDENTIFYING THE COMMUNICATION, INFORMATION AND SUPPORT NEEDS OF STAKEHOLDERS IN PALLIATIVE AND END-OF-LIFE CARE USING A QUALITATIVE ANALYSIS OF FREE-TEXT DATA.

;

Sivell;

S.;

Baillie;

J.;

van Godwin;

J.;

Byrne;

A.;

Nelson;

A.

palliative and end-of-life care

qualitative research

communication and information needs

psychosocial support

Abstract

Abstract

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Keywords

palliative and end-of-life care

qualitative research

communication and information needs

psychosocial support

Abstract

Introduction Palliative and end-of-life care research is under-recognised; stakeholders are 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, including cancer and focusing on interventional based research. However, respondents submitted comments and questions which did not always meet the criteria of the JLA methodology. Objectives To undertake a supplementary analysis of free text data generated by the JLA PeolcPSP national survey (UK), 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, concentrating on communication and decision-making. Results 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 Qualitatively analysing free text data identified a wide range of communication and decision-making concerns, as well as psychosocial support, which may not always fit into interventional methodology. Both quantitative and qualitative methodologies are needed to address the needs of all stakeholders in palliative and end-of-life care.

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© Copyright 2019 Morressier GmbH.
All rights reserved.