scholarly journals THE PALLIATIVE AND END OF LIFE CARE PRIORITY SETTING PARTNERSHIP (PEOLCPSP): DETERMINING EVIDENCE UNCERTAINTIES FROM THE PERSPECTIVE OF THE END USER OF RESEARCH

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A42.1-A42 ◽  
Author(s):  
Sabine Best ◽  
Teresa Tate ◽  
Bill Noble ◽  
Joanna Eley ◽  
Joanna Black ◽  
...  
Keyword(s):  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Life Care ◽  
End User ◽  
Priority Setting Partnership

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

2018 ◽  
Vol 8 (3) ◽  
pp. 375.1-375
Author(s):  
S Sivell ◽  
J Baillie ◽  
J VanGodwin ◽  
A Byrne ◽  
A Nelson
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Support Needs ◽  
Free Text ◽  
List Type ◽  
Life Care ◽  
Text Data ◽  
Priority Setting Partnership

IntroductionPalliative 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.AimTo undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.MethodsA 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).ResultsApproximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.Spiritual and psychosocial needs: providing emotional and psychological support for patients carers and professionals.ConclusionsWe 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.References. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care. Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015). Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)

scholarly journals Priority setting for end-of-life care

2016 ◽  
Vol 6 (3) ◽  
pp. 399.1-399 ◽  
Author(s):  
Michael Spence ◽  
Rebecca Spencer ◽  
Janet Diffin ◽  
Peter Mellor ◽  
Gunn Grande
Keyword(s):  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Life Care

scholarly journals P-69  Priority setting for end-of-life care

2016 ◽  
Author(s):  
Peter Mellor ◽  
Gunn Grande ◽  
Janet Diffin ◽  
Michael Spence ◽  
Rebecca Spencer
Keyword(s):  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Life Care

Four Themes in Recent Swedish Bioethics Debates

2011 ◽  
Vol 20 (3) ◽  
pp. 409-417 ◽  
Author(s):  
GERT HELGESSON ◽  
STEFAN ERIKSSON
Keyword(s):  
End Of Life ◽  
Priority Setting ◽  
Genetic Screening ◽  
End Of Life Care ◽  
Hpv Vaccination ◽  
General Interest ◽  
Life Care ◽  
Dual Use ◽  
Scientific Fraud ◽  
Vaccination Strategies

A wide variety of bioethical themes have recently been debated and researched in Sweden, including genetic screening, HPV vaccination strategies, end-of-life care, injustices and priority setting in healthcare, dual-use research, and the never-ending story of scientific fraud. Also, there are some new events related to Swedish biobanking that might be of general interest. Here we will concentrate on four themes: end-of-life care, dual-use research, scientific fraud, and biobanking.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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