Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries

Brereton, Louise; Ingleton, Christine; Gardiner, Clare; Goyder, Elizabeth; Mozygemba, Kati; Lysdahl, Kristin Bakke; Tummers, Marcia; Sacchini, Darío; Leppert, Wojciech; Blaževičienė, Aurelija; Wilt, Gert Jan van der; Refolo, Pietro; Nicola, Martina De; Chilcott, James; Oortwijn, Wija

doi:10.1177/0269216316649154

Cited by 26 publications

(47 citation statements)

References 25 publications

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“…Differences in perspectives were common, mainly between patients/carers and the dominant perspective, professionals. 28,46,51,84,92,100 There was a need to make the patient/carer voice more visible throughout, including in dissemination. 28,50,61,71,75,83 It may be helpful to view differing perspectives as not in competition, but as different opinions that all needed to be understood to reach a solution.…”

Section: Resultsmentioning

confidence: 99%

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

et al. 2019

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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 Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts.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.

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Section: Resultsmentioning

confidence: 99%

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

et al. 2019

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“…In general, across the papers we reviewed, health professionals were seen as essential contributors to clinical research, who are either embedded in research teams or contribute as necessary partners to academic researchers, facilitating efforts to recruit patients or to implement protocols being tested in a trial (1,5,11,(15)(16)(17)(18)(19)(20)(21). Several papers also discuss the roles played by health professionals in priority setting for research (2,9,13,(22)(23)(24)(25)(26)(27)(28).…”

Section: There Are Diverse Ways In Which Nhs Staff Are Involved In Rementioning

confidence: 99%

“…• Collaboration with other organisations and individuals with an active interest in research (1,3,8,9,25,31,37). Several studies note that the participation of NHS staff in research is enabled when their organisation has supportive links, partnerships or networks with charities, research partners in academia or other NHS organisations or industry bodies with an active interest in commissioning or undertaking research (1,3,25).…”

Section: Type Of Enabler Examplesmentioning

confidence: 99%

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Enabling NHS staff to contribute to research: Reflecting on current practice and informing future opportunities

Dimova¹,

Prideaux²,

Ball³

et al. 2018

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Box 1: Involving NHS staff in developing and evaluating an outpatient discharge checklist Box 2: Involving nurses in the design of a new nursing bag Box 3: Using a Delphi survey to identify research priorities of four different stakeholder groups Box 4: Identifying priorities for research in emergency prehospital care Box 5: Collaboration between staff and patients to increase accrual to a national hormone replacement therapy trial Box 6: Priority-setting partnership to identify research priorities in anaesthesia and perioperative care Box 7: Engaging staff in identifying research activity in a region and opportunities for further engagement Box 8: Priority-setting partnership to identify priorities in acne treatment uncertainties Box 9: Involvement of healthcare staff in an action plan to improve the Trust's research capacity xiii

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“…Case study findings related to how the model was interpreted (assessment of the model) operationalized by participants (implementation of the model) and its impact on KTE (outcomes) as depicted in Figure 1. KTE plans did not remain static, instead developing and changing as research progressed, and were influenced by stakeholders, funders, organizational influences, and external factors as previously described (Brereton et al, 2017). Prior to engaging in the case study, PIs did not report using guidelines or frameworks as a core component of their KTE strategy.…”

Section: Discussionmentioning

confidence: 99%

EMTReK: An Evidence-based Model for the Transfer & Exchange of Research Knowledge—Five Case Studies in Palliative Care

Payne¹,

Brown²,

Guérin

et al. 2019

SAGE Open Nursing

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Knowledge transfer is recognized as a vital stage in evidence-informed nursing with several models available to guide the process. Although the main components commonly involve identification of messages, stakeholders, processes and contexts, the underpinning models remain largely unrefined and untested; and they need to be evaluated. We set out to explore the use of our “Evidence-based Model for Transfer & Exchange of Research Knowledge” (EMTReK) within palliative care research. Between January 2016 and May 2017, data were collected from five case studies which used the EMTReK model as a means to transfer knowledge relating to palliative care research, undertaken in Ireland. A qualitative approach was taken with thematic analysis of case documentation, semistructured interviews, and field notes from the case studies. Qualitative analysis supports the core components of EMTReK as a model of knowledge transfer and exchange in palliative care. Results focused upon identification of messages to be transferred to defined stakeholders through interactive processes that take account of context. Case study findings show how the model was interpreted and operationalized by participants and demonstrate its impact on knowledge transfer and exchange. Eight themes were drawn from the data: Credibility of the Model, Model Accessibility, Applicability to Palliative Care, A Matter of Timing, Positive Role of Facilitation, Required Resources, Enhancing Research Quality, Limitations or Areas for Further Consideration. Study participants found EMTReK to be a useful guide when making knowledge transfer plans. Success depended upon adequate facilitation and guidance. Further exploration of the model's utility is warranted.

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Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries

Cited by 26 publications

References 25 publications

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

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

Enabling NHS staff to contribute to research: Reflecting on current practice and informing future opportunities

EMTReK: An Evidence-based Model for the Transfer & Exchange of Research Knowledge—Five Case Studies in Palliative Care

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