Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries. 2017

Louise Brereton, and Christine Ingleton, and Clare Gardiner, and Elizabeth Goyder, and Kati Mozygemba, and Kristin Bakke Lysdahl, and Marcia Tummers, and Dario Sacchini, and Wojciech Leppert, and Aurelija Blaževičienė, and Gert Jan van der Wilt, and Pietro Refolo, and Martina De Nicola, and James Chilcott, and Wija Oortwijn
1 ScHARR, University of Sheffield, Sheffield, UK.

Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ⩾18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D005060 Europe The continent north of AFRICA, west of ASIA and east of the ATLANTIC OCEAN. Northern Europe,Southern Europe,Western Europe
D006302 Health Services Research The integration of epidemiologic, sociological, economic, and other analytic sciences in the study of health services. Health services research is usually concerned with relationships between need, demand, supply, use, and outcome of health services. The aim of the research is evaluation, particularly in terms of structure, process, output, and outcome. (From Last, Dictionary of Epidemiology, 2d ed) Health Care Research,Medical Care Research,Research, Health Services,Action Research,Health Services Evaluation,Healthcare Research,Research, Medical Care,Evaluation, Health Services,Evaluations, Health Services,Health Services Evaluations,Research, Action,Research, Health Care,Research, Healthcare
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000073597 Stakeholder Participation A process between an entity and those groups or individuals potentially or actually impacted by the actions of that entity over a range of activities and approaches. Stakeholder Engagement,Stakeholder Role,Engagement, Stakeholder,Engagements, Stakeholder,Stakeholder Roles
D017144 Focus Groups A method of data collection and a QUALITATIVE RESEARCH tool in which a small group of individuals are brought together and allowed to interact in a discussion of their opinions about topics, issues, or questions. Focus Group,Group, Focus,Groups, Focus
D036301 Qualitative Research Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means. (Qualitative Inquiry: A Dictionary of Terms Thousand Oaks, CA: Sage Publications, 1997) Research, Qualitative

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