O-14 Unmet need in out of hours and emergency support: supplementary report from the palliative and end of life care priority setting partnership (peolcpsp)

2015 ◽  
Vol 5 (Suppl 3) ◽  
pp. A78.1-A78
Author(s):  
Jordan VanGodwin ◽  
Stephanie Sivell ◽  
Anthony Byrne ◽  
Annmarie Nelson
2018 ◽  
Vol 8 (3) ◽  
pp. 375.1-375
Author(s):  
S Sivell ◽  
J Baillie ◽  
J VanGodwin ◽  
A Byrne ◽  
A Nelson

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)


2020 ◽  
Vol 37 (3) ◽  
pp. 340-347 ◽  
Author(s):  
Camilla Kjellstadli ◽  
Heather Allore ◽  
Bettina S Husebo ◽  
Elisabeth Flo ◽  
Hogne Sandvik ◽  
...  

Abstract Background General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. Objective To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. Methods Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012–13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. Results Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which <3% died at home. GP office consultations decreased towards the end of life. The likelihood of home death versus another location increased in relation to GP home visits [one home visit odds ratio (OR) 1.92, confidence interval (CI) 1.71–2.15; two or more OR 3.49, CI 3.08–3.96] and GP interdisciplinary collaboration (one contact OR 1.76, CI 1.59–1.96; two or more OR 2.52, CI 2.32–2.74). Conclusions GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.


2016 ◽  
Vol 6 (3) ◽  
pp. 399.1-399 ◽  
Author(s):  
Michael Spence ◽  
Rebecca Spencer ◽  
Janet Diffin ◽  
Peter Mellor ◽  
Gunn Grande

2019 ◽  
Vol 1 ◽  
pp. 2 ◽  
Author(s):  
Kate Flemming ◽  
Karl Atkin ◽  
Chris Ward ◽  
Ian Watt

Background: There is an increasing emphasis on the importance of the palliative and end-of-life care being provided in the community. Key to the success of this is the availability of information and educational support to facilitate carers in their role. The aim of the paper is to explore the educational needs of adult carers providing physical and other care to people at the end of life Methods: A qualitative evidence synthesis was conducted using meta-ethnography. Five electronic databases were searched to January 2014, combining terms for: cancer, chronic obstructive pulmonary disease, neurodegenerative conditions, renal disease, heart failure and dementia, with terms for carers and education. Results: A total of 35 papers were included in the review, reporting the experiences of over 900 carers. Throughout the illness trajectory carers were either enabled or hindered in their role by the nature and way information and education were provided. Enabling factors included: a sense of trust in health professionals; timely and accurate information delivered compassionately; access to professionals for information and support particularly during out-of-hours. Where carers experienced a lack of information or support this added to the strain of caring. Carers then felt the need to take on a more active role, acting both as an advocate and decision maker. Conclusions: Carers express information and educational needs throughout the illness trajectory. The quality of health professionals’ communication with carers was fundamental in ensuring carers felt confident and supported. Timely access to information and support from appropriately qualified health professionals should be made available to carers, including the out-of-hours period.


Author(s):  
Peter Mellor ◽  
Gunn Grande ◽  
Janet Diffin ◽  
Michael Spence ◽  
Rebecca Spencer

Sign in / Sign up

Export Citation Format

Share Document