Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop

Sigurdardottir, Katrin Ruth; Haugen, Dagny Faksvåg; Rijt, Carin C.D. van der; Sjøgren, Per; Harding, Richard; Higginson, Irene J; Kaasa, Stein

doi:10.1016/j.ejca.2010.03.012

Cited by 37 publications

(34 citation statements)

References 16 publications

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“…In recognition of the importance of this challenge, the international research community has called for more clinically-relevant, collaborative, and strategic approaches to palliative care research [18–22]. While many disciplines have recognised the importance of research in palliative care for neurodegeneration individually, a problem is that researchers are tackling the problem from different perspectives, theoretical frameworks, and using diverse methodologies; these are complementary but require a platform for discussion, debate and collaboration.…”

Section: Introductionmentioning

confidence: 99%

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

et al. 2017

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BackgroundDementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.Main bodyAn interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.ConclusionsThe care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

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Section: Introductionmentioning

confidence: 99%

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

et al. 2017

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“…Internationally, palliative care research has contributed to its dissemination and implementation, with a key role in the fulfillment of its principles, philosophy and goals (7)(8) . In fact, research is closely related to the clinical development of palliative care (9) . Research is often associated with training, particularly postgraduate education.…”

Section: Introductionmentioning

confidence: 99%

Palliative care and nursing in dissertations and theses in Portugal: a bibliometric study

Ferreira¹,

Pereira²,

Martins

et al. 2016

Rev. esc. enferm. USP

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Objective To identify the academic scientific production on palliative care in master dissertations and PhD theses carried out by nurses in Portugal. Method A descriptive retrospective study of bibliometric type with search for the abstracts available in repositories of higher education institutions in the period 2000-2014. Results Of the 1814 papers identified, 249 met the inclusion criteria (ten doctoral theses and 239 master dissertations). The most representative methodological approach was quantitative (31.35%) and the most studied area was family/informal caregiver (20.69%). The most studied target population were the students/health professionals (38.51%). Conclusion The academic scientific production in this area has been growing in spite of the need for continued investment in order to fill the identified gaps.

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“…1,2 Research is required to develop quality palliative care. [3][4][5][6][7] This will provide evidence to address deficits in care, to establish whether unproven therapy helps patients and to ensure that palliative care can secure the resources required.…”

Section: Introductionmentioning

confidence: 99%

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

et al. 2013

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Background: There is little guidance on the particular ethical concerns that research raises with a palliative care population. Aim: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Design: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Setting/participants: Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. 909Results: The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. Conclusions: The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

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Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop

Cited by 37 publications

References 16 publications

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Palliative care and nursing in dissertations and theses in Portugal: a bibliometric study

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

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