scholarly journals A Strategy To Advance the Evidence Base in Palliative Medicine: Formation of a Palliative Care Research Cooperative Group

2010 ◽  
Vol 13 (12) ◽  
pp. 1407-1413 ◽  
Author(s):  
Amy P. Abernethy ◽  
Noreen M. Aziz ◽  
Ethan Basch ◽  
Janet Bull ◽  
Charles S. Cleeland ◽  
...  
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Evidence Base ◽  
Cooperative Group ◽  
Care Research

scholarly journals Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

2019 ◽  
Vol 33 (8) ◽  
pp. 969-984 ◽  
Author(s):  
Eleni Chambers ◽  
Clare Gardiner ◽  
Jill Thompson ◽  
Jane Seymour
Keyword(s):  
Palliative Care ◽  
Evidence Synthesis ◽  
Evidence Base ◽  
Qualitative Evidence Synthesis ◽  
Training Support ◽  
Care Research ◽  
Qualitative Evidence ◽  
Health And Social Care ◽  
Facilitators And Barriers ◽  
The Impact

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

scholarly journals Trends in Pediatric Palliative Care Research (TPPCR) 2019; Issue #5: Commentary on Ekberg et al.

2021 ◽  
Author(s):  
Fariel Rahman ◽  
TPPCR
Keyword(s):  
Palliative Care ◽  
Delphi Study ◽  
Palliative Medicine ◽  
Pediatric Palliative Care ◽  
Care Research ◽  
Paediatric Palliative Care

This TPPCR commentary discusses the 2020 paper by Ekberg et al., “Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care” published in Palliative Medicine.

scholarly journals Erratum

2016 ◽  
Vol 30 (10) ◽  
pp. 986-986
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Care Research

Philip J Larkin, Fliss Murtagh, Heather Richardson, Myra Bluebond Langner and Sheila Payne (2016) Collaboration: Securing a future for palliative care research. Palliative Medicine, September 2016 30:8 709–710, doi: 10.1177/0269216316661970 .

Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group (PCRC) (GP756)

2020 ◽  
Vol 60 (1) ◽  
pp. 278-279
Author(s):  
Jean Kutner ◽  
Christine Ritchie ◽  
Kathryn Pollak ◽  
Karen Kehl ◽  
Jeri Miller
Keyword(s):  
Palliative Care ◽  
Cooperative Group ◽  
Care Research

scholarly journals International palliative care research in the context of global development: a systematic mapping review

2016 ◽  
Vol 8 (1) ◽  
pp. 7-18 ◽  
Author(s):  
Joseph Clark ◽  
Clare Gardiner ◽  
Amy Barnes
Keyword(s):  
Palliative Care ◽  
International Development ◽  
Evidence Base ◽  
Observational Research ◽  
Cochrane Library ◽  
Bibliographic Databases ◽  
Research Approach ◽  
Global Level ◽  
Care Research ◽  
Mapping Review

ContextAn increasing amount of health policy is formulated at global level. At this global level, palliative care has attracted support primarily from normative institutions (WHO), not funding agencies. To attract greater global attention from policymakers, it has been argued that an international approach to research is required. However, the extent to which an international approach is being undertaken is unknown.ObjectivesTo systematically identify and thematically synthesise all international palliative care research, defined as research involving two or more countries, or focused on the global level.MethodsFive bibliographic databases (CINAHL, Cochrane Library, ASSIA, Web of Knowledge, Psychinfo) were searched for journal articles relevant to international and global palliative care and end-of-life care. Data were extracted using a piloted extraction form and findings were synthesised.Results184 studies were included, published across 75 different academic journals. Research emanates from and focuses on all world regions and there is increasing focus on the global level. Thematically, there is a high focus on Evaluation (n=53) and views of Stakeholders (n=38). The review revealed a predominantly observational research approach and few interventional studies were identified.ConclusionsInternational palliative care research is a relatively new, but growing field. However, many gaps in the evidence base remain and palliative care research continues to take place outside broader discourses of international development. The relative absence of interventional research demonstrating the effectiveness and cost-effectiveness of palliative care risks limiting the tools with which advocates can engage with international policymakers on this topic.

scholarly journals Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group

2017 ◽  
Vol 20 (6) ◽  
pp. 584-591 ◽  
Author(s):  
Christine L. Ritchie ◽  
Kathryn I. Pollak ◽  
Karen A. Kehl ◽  
Jeri L. Miller ◽  
Jean S. Kutner
Keyword(s):  
Palliative Care ◽  
Cooperative Group ◽  
Care Research

‘The horse has bolted I suspect’: A qualitative study of clinicians’ attitudes and perceptions regarding palliative rehabilitation

2016 ◽  
Vol 31 (7) ◽  
pp. 642-650 ◽  
Author(s):  
Fiona Runacres ◽  
Heidi Gregory ◽  
Anna Ugalde
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Palliative Medicine ◽  
Evidence Base ◽  
Structured Interviews ◽  
Care Services ◽  
Attitudes And Perceptions ◽  
Palliative Care Services ◽  
Palliative Care Units ◽  
Rehabilitation Needs

Background: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. Aim: To explore palliative medicine physicians’ attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Design: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Participants: Australian palliative medicine physicians working in inpatient palliative care units. Results: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years’ experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians’ attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. Conclusion: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

scholarly journals The importance of methodology to palliative care research: A new article type for Palliative Medicine

2021 ◽  
pp. 026921632110695
Author(s):  
Jenny T van der Steen ◽  
Melissa J Bloomer ◽  
Sandra Martins Pereira
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Care Research ◽  
Article Type
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