Search

Zusammenfassung Hintergrund Die Versorgungsforschung ist von Multidisziplinarität und Methodenpluralität gekennzeichnet. Die Medizin bildet einen wichtigen Orientierungspunkt, auch in der Adressierung forschungsethischer Fragen. Zugleich werden in sozialwissenschaftlichen Fächern jedoch die etwa in der Medizin etablierten stark formalisierten Begutachtungsverfahren gerade aus der Perspektive qualitativ Forschender kontrovers diskutiert. Wenig ist bisher darüber bekannt, welche disziplin- und methodenspezifischen forschungsethischen Fragen sich in der Forschungspraxis der qualitativen Versorgungsforschung stellen. Methodik Im Sommer 2019 wurde eine Online-Befragung mit Versorgungsforscher*innen zu zwei Themenschwerpunkten durchgeführt: a) Forschungsethische Fragen in der Praxis qualitativer Versorgungsforschung und genutzte Formen der Reflexion und Beratung und b) Erfahrungen mit der Begutachtung durch Ethikkommissionen. Der Fragebogen enthielt zehn offene Fragen, die Antworten wurden inhaltsanalytisch ausgewertet. Gegenstand der vorliegenden Veröffentlichung ist der erste Themenschwerpunkt. Ergebnisse Insgesamt haben 73 Personen mit heterogenem fachlichen Hintergrund und durchschnittlich gut sieben Jahren Arbeitserfahrung in der Versorgungsforschung an der Befragung teilgenommen. Als zentrale forschungsethische Fragen wurden berichtet: a) Legitimität und Antizipation ethischer Herausforderungen in der Planung der Forschung, b) Feldzugang, Einwilligung und Belastungen während der Datenerhebung, c) Anonymisierung und Datenschutz in der Datenaufbereitung, d) Datenanalyse, e) Veröffentlichung von Ergebnissen und Daten sowie f) den Forschungsprozess übergreifende Themen wie zentrale Grundsätze und Ziele der Forschung sowie die Rolle der Forschenden. Als Formate der Reflexion über diese Themen wurden v. a. die Auseinandersetzung mit Texten und Regularien und Austausch und Beratung angegeben. Schlussfolgerungen Die erhobenen Daten dokumentieren zum einen typische zentrale forschungsethische Fragen, mit denen sich Forscher*innen im Kontext der qualitativen Versorgungsforschung konfrontiert sehen; zum anderen verweisen sie darüber hinaus auf Leerstellen und weniger beachtete Themen. Eine systematisierende ethische Reflexion könnte diese Befunde aufnehmen, um fachspezifische Prinzipien und Formen für die Auseinandersetzung mit und Lösung von forschungsethischen Fragen zu entwickeln.

Zusammenfassung Hintergrund Bei Gesundheitsfragen spielt das Internet eine zentrale Rolle, wobei Verbraucher:innen vor der Herausforderung stehen, geeignete Such- und Bewertungsstrategien zu entwickeln. Damit Informationen zur Gesundheit im Internet gefunden, verstanden, beurteilt und angewendet werden können, bedarf es digitaler Gesundheitskompetenz auf individueller und auf organisationaler Ebene. Vor dem Hintergrund gesellschaftlicher Pluralität und Diversität wurden Fähigkeiten und Zugänge marginalisierter Communities in diesem Zusammenhang bisher wenig beforscht. Ziel Diese Studie untersuchte die Nutzung von Online-Gesundheitsinformationen im Alltag aus einer postmigrantischen Perspektive, welche nicht Migrationshintergründe, sondern lokale Kontexte von Migrant:innen in Deutschland als Vulnerabilitätsvariable versteht. Ziel dieser Studie war es, sowohl das digitale Gesundheitsinformationsverhalten marginalisierter Communities ethnografisch und kollaborativ zu erforschen als auch praxisnahe und kultursensible Ansätze für Akteur:innen der Gesundheitskommunikation zu entwickeln ohne migrantisierende Zuschreibungen zu reproduzieren. Methoden Im Rahmen einer kollaborativen ethnografischen Feldforschung im Stadtteillabor der Bochumer Hustadt von 10/2020–01/2021 führten Community-Forscher:innen online leitfadengestützte Interviews in ihrem Umfeld durch. Die Interviews wurden mittels einer qualitativen Inhaltsanalyse ausgewertet. Ergebnisse und Diskussion Die Ergebnisse machen deutlich, dass sprachliche, inhaltliche und mediale Aspekte von Online-Gesundheitsinformationen den Zugang zu und Umgang mit diesen für marginalisierte Communities bedingen. Die postmigrantische Perspektive stellt einerseits Migration als hinreichende Analyse- und Erklärungskategorie in Frage und begründet zugleich Diversitäts- und Kultursensibilität als zentrale Komponenten des Zugangs zu Gesundheitsinformationen und der Entwicklung von Maßnahmen zur Stärkung der digitalen Gesundheitskompetenz in pluralen Gesellschaften. Es bedarf sowohl vielsprachiger, transkulturell resonierender und technisch barrierearmer Online-Gesundheitsinformationen als auch gestärkter Interaktion zwischen Individuen einer pluralen postmigrantischen Gesellschaft und der Online-Gesundheitskommunikation.

Abstract: Progress in predictive medicine has increased the challenges to navigating complex risk information for patients and healthcare professionals. This contribution investigates how people facing the risk of developing Alzheimer’s dementia perceive risk, what aspects are relevant to their health literacy, and how to promote individual health literacy in predictive medicine. We conducted a qualitative study analyzing narrative interviews, body maps, and sociodemographic data from persons who had undergone early predictive procedures in a memory clinic. We understand the promotion of health literacy as an ethical task in predictive medicine and argue for (1) emphasizing personal resources to promote subjective health literacy, (2) reframing communication and decision-making about disease risk, and (3) teaching skills for value-sensitive, individualized risk communication.

The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care.

The "DNVF Memorandum Health Literacy (Part 2): Operationalization and Measurement of Health Literacy from the Perspective of Health Services Research" of the German Network for Health Services Research represents the continuation of the memorandum "DNVF Memorandum Health Literacy (Part 1): Background, Subject and Issues in Health Services Research". In addition to the general requirements for the measurement of health literacy, this memorandum also deals with the specific requirements, such as the differentiation of health literacy from related constructs, the differences between performance-based and self-assessment methods, the differences between generic and specific instruments, the use of screening instruments, and the measurement of health literacy in special populations. Furthermore, special considerations about the measurement of digital health literacy, potentials of qualitative and participatory research approaches as well as research ethics in the measurement of health literacy will be elaborated on. A special emphasis is placed on practical relevance for health services researchers. Finally, the authors will give an outlook on challenges and research desiderata in connection with the measurement of health literacy in the context of health services research.Das vorliegende „DNVF Memorandum Gesundheitskompetenz (Teil 2) – Operationalisierung und Messung von Gesundheitskompetenz aus Sicht der Versorgungsforschung“ des Deutschen Netzwerks Versorgungsforschung e.V. (DNVF) stellt die Fortführung des Memorandums „DNVF Memorandum Gesundheitskompetenz (Teil 1) – Hintergrund, Gegenstand und Fragestellungen in der Versorgungsforschung“ dar. Neben den allgemeinen Anforderungen an die Messung der Gesundheitskompetenz, beschäftigt sich dieses Memorandum auch mit den speziellen Anforderungen, wie die Abgrenzung zu verwandten Konstrukten, den Unterschieden zwischen performanzbasierten und Selbsteinschätzungsverfahren, den Unterschieden zwischen generischen und spezifischen Instrumenten, dem Einsatz von Screeninginstrumenten sowie der Messung der Gesundheitskompetenz bei speziellen Personengruppen. Weiterhin werden Besonderheiten bei der Messung der digitalen Gesundheitskompetenz, Potenziale qualitativer und partizipativer Forschungszugänge sowie forschungsethische Gesichtspunkte bei der Messung der Gesundheitskompetenz erarbeitet. Ein besonderer Wert wird auf den Praxisbezug gelegt, der am Ende der jeweiligen Abschnitte mit einem Fazit für die Versorgungsforschung aufgegriffen wird. Abschließend wird einen Blick auf Herausforderungen und Forschungsdesiderate im Zusammenhang mit der Messung von Gesundheitskompetenz im Rahmen der Versorgungsforschung geworfen.

Health services research is multidisciplinary and involves the use of a plurality of research methods. Medicine as a discipline serves as an important reference, also in terms of addressing ethics issues in research. At the same time, however, the highly formalized ethical reviews common in medicine, are controversial within the social sciences, especially among qualitative researchers. So far, little is known about which research ethics issues arise in qualitative health services research.In summer 2019, an online survey was conducted among health services researchers on two main topics: a) research ethics issues in qualitative health services research and b) experiences with the ethics review procedures. The questionnaire contained ten open questions; the responses were analyzed for content. The first topic (ethical issues) is addressed within this article.A total of 73 researchers with heterogeneous professional background and an average of more than seven years of work experience in health services research participated in the survey. The following were reported as central research ethics issues: a) legitimacy and anticipation of ethical challenges in the planning of research, b) field access, consent and burdens during data collection, c) anonymization and data protection in data processing, d) data analysis, e) publication of results and data and f) general topics such as central principles and goals of research as well as the role of researchers. The main formats for dealing with these issues were exchange and consultation as well as referring to texts and regulations.On the one hand, the data documents typical central research ethics questions that researchers are confronted with in the context of qualitative health services research; on the other hand, they also point to gaps and less considered topics. A systematizing ethical reflection could take up these findings in order to develop health services research-specific principles and strategies for handling research ethics issues.Die Versorgungsforschung ist von Multidisziplinarität und Methodenpluralität gekennzeichnet. Die Medizin bildet einen wichtigen Orientierungspunkt, auch in der Adressierung forschungsethischer Fragen. Zugleich werden in sozialwissenschaftlichen Fächern jedoch die etwa in der Medizin etablierten stark formalisierten Begutachtungsverfahren gerade aus der Perspektive qualitativ Forschender kontrovers diskutiert. Wenig ist bisher darüber bekannt, welche disziplin- und methodenspezifischen forschungsethischen Fragen sich in der Forschungspraxis der qualitativen Versorgungsforschung stellen.Im Sommer 2019 wurde eine Online-Befragung mit Versorgungsforscher*innen zu zwei Themenschwerpunkten durchgeführt: a) Forschungsethische Fragen in der Praxis qualitativer Versorgungsforschung und genutzte Formen der Reflexion und Beratung und b) Erfahrungen mit der Begutachtung durch Ethikkommissionen. Der Fragebogen enthielt zehn offene Fragen, die Antworten wurden inhaltsanalytisch ausgewertet. Gegenstand der vorliegenden Veröffentlichung ist der erste Themenschwerpunkt.Insgesamt haben 73 Personen mit heterogenem fachlichen Hintergrund und durchschnittlich gut sieben Jahren Arbeitserfahrung in der Versorgungsforschung an der Befragung teilgenommen. Als zentrale forschungsethische Fragen wurden berichtet: a) Legitimität und Antizipation ethischer Herausforderungen in der Planung der Forschung, b) Feldzugang, Einwilligung und Belastungen während der Datenerhebung, c) Anonymisierung und Datenschutz in der Datenaufbereitung, d) Datenanalyse, e) Veröffentlichung von Ergebnissen und Daten sowie f) den Forschungsprozess übergreifende Themen wie zentrale Grundsätze und Ziele der Forschung sowie die Rolle der Forschenden. Als Formate der Reflexion über diese Themen wurden v. a. die Auseinandersetzung mit Texten und Regularien und Austausch und Beratung angegeben.Die erhobenen Daten dokumentieren zum einen typische zentrale forschungsethische Fragen, mit denen sich Forscher*innen im Kontext der qualitativen Versorgungsforschung konfrontiert sehen; zum anderen verweisen sie darüber hinaus auf Leerstellen und weniger beachtete Themen. Eine systematisierende ethische Reflexion könnte diese Befunde aufnehmen, um fachspezifische Prinzipien und Formen für die Auseinandersetzung mit und Lösung von forschungsethischen Fragen zu entwickeln.

Background Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Methods Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing desire to die”. Conclusions We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically – based on evidence, patients’ views and consensus among professional experts. Trial registration The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

The "DNVF Memorandum Health Literacy (Part 2): Operationalization and Measurement of Health Literacy from the Perspective of Health Services Research" of the German Network for Health Services Research represents the continuation of the memorandum "DNVF Memorandum Health Literacy (Part 1): Background, Subject and Issues in Health Services Research". In addition to the general requirements for the measurement of health literacy, this memorandum also deals with the specific requirements, such as the differentiation of health literacy from related constructs, the differences between performance-based and self-assessment methods, the differences between generic and specific instruments, the use of screening instruments, and the measurement of health literacy in special populations. Furthermore, special considerations about the measurement of digital health literacy, potentials of qualitative and participatory research approaches as well as research ethics in the measurement of health literacy will be elaborated on. A special emphasis is placed on practical relevance for health services researchers. Finally, the authors will give an outlook on challenges and research desiderata in connection with the measurement of health literacy in the context of health services research. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial-License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)., Das vorliegende „DNVF Memorandum Gesundheitskompetenz (Teil 2) – Operationalisierung und Messung von Gesundheitskompetenz aus Sicht der Versorgungsforschung“ des Deutschen Netzwerks Versorgungsforschung e.V. (DNVF) stellt die Fortführung des Memorandums „DNVF Memorandum Gesundheitskompetenz (Teil 1) – Hintergrund, Gegenstand und Fragestellungen in der Versorgungsforschung“ dar. Neben den allgemeinen Anforderungen an die Messung der Gesundheitskompetenz, beschäftigt sich dieses Memorandum auch mit den speziellen Anforderungen, wie die Abgrenzung zu verwandten Konstrukten, den Unterschieden zwischen performanzbasierten und Selbsteinschätzungsverfahren, den Unterschieden zwischen generischen und spezifischen Instrumenten, dem Einsatz von Screeninginstrumenten sowie der Messung der Gesundheitskompetenz bei speziellen Personengruppen. Weiterhin werden Besonderheiten bei der Messung der digitalen Gesundheitskompetenz, Potenziale qualitativer und partizipativer Forschungszugänge sowie forschungsethische Gesichtspunkte bei der Messung der Gesundheitskompetenz erarbeitet. Ein besonderer Wert wird auf den Praxisbezug gelegt, der am Ende der jeweiligen Abschnitte mit einem Fazit für die Versorgungsforschung aufgegriffen wird. Abschließend wird einen Blick auf Herausforderungen und Forschungsdesiderate im Zusammenhang mit der Messung von Gesundheitskompetenz im Rahmen der Versorgungsforschung geworfen.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

In order to investigate controversies surrounding the desire to die phenomenon in palliative care by analyzing expert opinions on the topic, we carried out a secondary qualitative data analysis of free text comments collected during a Delphi survey that was designed to develop a conversation aid for dealing with desire to die in everyday clinical practice. Between 01/2018 and 03/2018, a two-round Delphi survey was carried out with national (German) and international palliative care experts. Free text comments were reinvestigated to identify controversies surrounding the desire to die phenomenon. An additional in-depth analysis focused on statements expressing attitudes towards proactively addressing (potential) desires to die. Within the Delphi survey, 103 of 149 multi-professional participants (almost all of them with practical and only six with exclusively theoretical expertise in palliative care) generated 444 free text comments. Thereof, we identified three main categories related to dealing with desire to die: “outer framework“, “extended care system” and “health-professional-patient-relationship”. Ambivalences, taboos and uncertainties surrounding desire to die in palliative care became apparent. Experts are divided concerning the practice of proactively addressing desire to die. Even if these conversations–especially the proactive approach–are also viewed critically, we conclude that open-ended and respectful communication about desire to die between health professionals and patients can be understood as an eligible intervention in palliative care. Proactively addressing the topic is a possible way to open up such conversations.

ZusammenfassungDer vorliegende Beitrag ist die Fortsetzung des – ebenfalls im Rahmen der Arbeitsgruppe Qualitative Methoden des Deutschen Netzwerks Versorgungsforschung (DNVF) e.V. entstandenen – ersten Artikels zu Gruppendiskussionen in der Versorgungsforschung. Beginnend mit theoretischen Überlegungen zum Gruppenbegriff wird spezifisches Wissen über Gruppen im Allgemeinen und das Verhalten einzelner Gruppenmitglieder im Besonderen zugrunde gelegt, welches sich insbesondere für die Gestaltung und Interpretation von Interaktionsprozessen im Gruppenkontext relevant zeigt. Es folgen Abschnitte mit Auseinandersetzungen zur Prozesshaftigkeit von Gruppendiskussionen, zu Moderationsstilen und -techniken sowie Reflexionen über mögliche Analysegegenstände und -verfahren. Dabei wird auch die Darstellung von Ergebnissen und Textpassagen diskutiert, in denen das Interaktionsgefüge mehrerer Diskussionsteilnehmer_innen sichtbar wird. Schließlich werden Einblicke in die Besonderheiten, Potenziale und Herausforderungen der Erhebung über Online-Plattformen gewährt. Zusammen geben beide Artikel einen Überblick über die wichtigsten Aspekte der Anwendung von Gruppendiskussionen im Bereich der Versorgungsforschung.

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system. Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing. Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau’s model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response. Participants: Purposive sample with professionals ( n = 29) and family carers ( n = 6) of people with advanced dementia in seven nursing homes and person’s own home care in four interview rounds ( n = 11; 10; 7; 7). Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of “being affected by” used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment. Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.

Being confronted with health risks implies challenges to mental health and well-being, requiring persons to find a balance between threat and confidence. The ‘power of definition’ with respect to health risks predominantly lies with professionals, implying that there is one appropriate way of understanding and interpreting risk-related information. This chapter will invite for a reflection on the potential of qualitative research in re-claiming the power of definition, offering the opportunity for a co-construction of concepts such as risk, vulnerability, and mental health. The aim is to highlight the particular value of different methodological approaches for opening up definitional spaces between scientists and research participants. It is grounded in the assumption that persons faced with a health risk construct their personal narratives to find a meaningful way to manage their situation, embedded in their biographical and social context. Narrative interviews with persons faced with a mental health risk were analysed in a circular process using complementing methodological perspectives from two disciplines: ethnology and linguistics. The findings were situated within a sociology of knowledge framework, focusing on the power of definition concerning a person’s health and health risks. Herein, particular attention was drawn to ethical and methodological issues of assessing concepts such as ‘risk’ or ‘vulnerability’; and the importance of (self-)reflexivity in conducting research in this field. Methodological reflection on these issues may contribute to constructively dealing with the tension between a standardised biomedical conception and an open, bottom-up approach to health knowledge in a medically oriented scientific environment.

Im Kontext der Entwicklung von und Versorgung mit medizinischen Implantaten gilt es, damit einhergehende ethische Fragestellungen zu berucksichtigen. Die Analyse ethischer Aspekte ist mit einigen Herausforderungen verbunden: Neue Errungenschaften der technischen Entwicklung gehen mit einer hoffnungsvollen und optimistischen Haltung gegenuber verbesserten Losungen fur gesundheitliche Probleme einher; zugleich impliziert der innovative Charakter ein Fehlen von umfassenden Einschatzungsmoglichkeiten und langfristigen Erfahrungswerten zur differenzierten Abwagung von Nutzen und Schaden. Mit den Health Technology Assessments (HTA) wird im Sinne einer Technikfolgenabschatzung angestrebt, eine Analyse und Bewertung innovativer biomedizinischer Technologien vorzunehmen. Diese konzentrieren sich jedoch zumeist auf okonomische Kosten-Nutzen-Analysen sowie Aspekte der Wirksamkeit und Sicherheit, wahrend ethische Aspekte in der Regel unterreprasentiert sind.

BackgroundWith the “Artemis”-mission mankind will return to the Moon by 2024. Prolonged periods in space will not only present physical and psychological challenges to the astronauts, but also pose risks concerning the medical treatment capabilities of the crew. So far, no guideline exists for the treatment of severe medical emergencies in microgravity. We, as a international group of researchers related to the field of aerospace medicine and critical care, took on the challenge and developed a an evidence-based guideline for the arguably most severe medical emergency – cardiac arrest.MethodsAfter the creation of said international group, PICO questions regarding the topic cardiopulmonary resuscitation in microgravity were developed to guide the systematic literature research. Afterwards a precise search strategy was compiled which was then applied to “MEDLINE”. Four thousand one hundred sixty-five findings were retrieved and consecutively screened by at least 2 reviewers. This led to 88 original publications that were acquired in full-text version and then critically appraised using the GRADE methodology. Those studies formed to basis for the guideline recommendations that were designed by at least 2 experts on the given field. Afterwards those recommendations were subject to a consensus finding process according to the DELPHI-methodology.ResultsWe recommend a differentiated approach to CPR in microgravity with a division into basic life support (BLS) and advanced life support (ALS) similar to the Earth-based guidelines. In immediate BLS, the chest compression method of choice is the Evetts-Russomano method (ER), whereas in an ALS scenario, with the patient being restrained on the Crew Medical Restraint System, the handstand method (HS) should be applied. Airway management should only be performed if at least two rescuers are present and the patient has been restrained. A supraglottic airway device should be used for airway management where crew members untrained in tracheal intubation (TI) are involved.DiscussionCPR in microgravity is feasible and should be applied according to the Earth-based guidelines of the AHA/ERC in relation to fundamental statements, like urgent recognition and action, focus on high-quality chest compressions, compression depth and compression-ventilation ratio. However, the special circumstances presented by microgravity and spaceflight must be considered concerning central points such as rescuer position and methods for the performance of chest compressions, airway management and defibrillation.

Background: Health literacy (HL) refers to the capacity to access, understand, appraise and apply information for decision-making and acting in health-related matters. In the field of Alzheimer’s disease (AD), expanding technologies of early disease detection, disease course prediction and eventually personalized prevention confront individuals at-risk with increasingly complex information, which demand substantial HL skills. Here we report current findings of HL research in at-risk groups. Methods: Search strings, referring to HL, AD, amyloid and risk, were developed. A systematic review was conducted in PUBMED, Cochrane Library, PsycINFO, and Web of Science to summarize the state of evidence on HL in at-risk individuals for Alzheimer’s dementia. Eligible articles needed to employ a validated tool for HL, mention the concept or one dimension (access, understand, appraise and apply information for decision-making and acting). Results: 26 quantitative and 9 qualitative studies addressing at least one dimension of HL were included. Overall, there is evidence for a wish to gain knowledge about the own brain status and risk of dementia. Psychological distress may occur and the subjective benefit-risk estimation may be modified after risk disclosure. Effects on lifestyle and planning may occur. Overall understanding and appraisal of information related to AD risk seem variable with several impacting factors. In mild cognitive impairment (MCI) basic HL skill seem to be affected by cognitive dysfunction. Conclusions: Systematic assessment of HL in at-risk population for AD is sparse. Findings indicate the paramount importance of adequate communication with persons at risk, being sensitive to individual needs and preferences. Substantial research needs were identified.

BACKGROUND: The Supportive and Palliative Care Indicators tool (SPICT) supports the identification of patients with potential palliative care (PC) needs. An Austrian-German expert group translated SPICT into German (SPICT-DE) in 2014. The aim of this study was the systematic development, refinement, and testing of SPICT-DE for its application in primary care (general practice).METHODS: SPICT-DE was developed by a multiprofessional research team according to the TRAPD model: translation, review, adjudication, pretesting and documentation. In a pretest, five general practitioners (GPs) rated four case vignettes of patients with different PC needs. GPs were asked to assess whether each patient might benefit from PC or not (I) based on their subjective appraisal ("usual practice") and (II) by using SPICT-DE. After further refinement, two focus groups with 28 GPs (68% with a further qualification in PC) were conducted to test SPICT-DE. Again, participants rated two selected case vignettes (I) based on their subjective appraisal and (II) by using SPICT-DE. Afterwards, participants reflected the suitability of SPICT-DE for use in their daily practice routine within the German primary care system. Quantitative data were analysed with descriptive statistics and non-parametric tests for small samples. Qualitative data were analysed by conventional content analysis. Focus group discussion was analysed combining formal and conventional content analysis.RESULTS: Compared to the spontaneous rating of the case vignettes based on subjective appraisal, participants in both the pretest and the focus groups considered PC more often as being beneficial for the patients described in the case vignettes when using SPICT-DE. Participants in the focus groups agreed that SPICT-DE includes all relevant indicators necessary for an adequate clinical identification of patients who might benefit from PC.CONCLUSIONS: SPICT-DE supports the identification of patients who might benefit from PC and seems suitable for routine application in general practice in Germany. The systematic development, refinement, and testing of SPICT-DE in this study was successfully completed by using a multiprofessional and participatory approach.

ZusammenfassungVersorgungsforscher_innen beschäftigen sich mit den Akteur_innen, Strukturen und Auswirkungen von Gesundheitsversorgung. Dies umfasst z. B. die Frage, wie soziale Faktoren, Finanzierungssysteme, Organisationsstrukturen, Technologien und persönliche Verhaltensweisen sich auf die Akteure und Ergebnisse des Versorgungsprozesses auswirken. Im Zuge dessen finden auch qualitative Methoden, die das Handeln von Menschen unter ihren jeweiligen Lebensbedingungen und nicht im klinisch-experimentellen Kontext betrachten, Anwendung. Gruppenverfahren gehören dabei zu den grundlegenden Erhebungszugängen der qualitativen Versorgungsforschung. Um die Potenziale von Gruppenverfahren (Gruppendiskussion bzw. Fokusgruppen) innerhalb der Versorgungsforschung sichtbar zu machen, sollen diese im Rahmen von 2 Artikeln in ihren Facetten und bezogen auf die Anwendung in der Versorgungsforschung dargestellt werden. Wir möchten mit diesem ersten Artikel Versorgungsforscher_innen dazu anregen, über bestimmte Fragen zu Wahl und Varianten der Methode sowie zur Planung von Gruppenverfahren nachzudenken, wie z. B. Stichprobenbildung und Gruppenzusammensetzung, aber auch die konkrete Datenerhebung und Aspekte des Datenschutzes. Im (in Vorbereitung befindlichen) Folgeartikel zum Thema Gruppendiskussion wird eine theoretische Betrachtung des Begriffs der ‚Gruppe‘ ebenso im Fokus stehen wie die Moderation, unterschiedliche mögliche Auswertungsverfahren/-strategien und der Bereich der qualitativen Online-Forschung.

This article is the second of 2 articles on group discussions in health services research, written by the Qualitative Methods Working Group of the German Network for Health Care Research (DNVF). It starts with theoretical considerations on the concept of groups, and provides specific knowledge about groups in general and the behaviour of individual group members in particular, which is relevant for the design and interpretation of interaction processes in the group context. The following sections deal with the processuality of group discussions, moderation styles and techniques as well as reflections on possible subjects and methods of analysis. Presentation of results and text passages which unveil the interaction structure of several discussion participants are also discussed here. Finally, insights into the special features, potentials and challenges of group discussions via online platforms are provided. Together, the two articles provide an overview of the most important aspects of the application of group discussions in the field of health services research.Der vorliegende Beitrag ist die Fortsetzung des – ebenfalls im Rahmen der Arbeitsgruppe Qualitative Methoden des Deutschen Netzwerks Versorgungsforschung (DNVF) e.V. entstandenen – ersten Artikels zu Gruppendiskussionen in der Versorgungsforschung. Beginnend mit theoretischen Überlegungen zum Gruppenbegriff wird spezifisches Wissen über Gruppen im Allgemeinen und das Verhalten einzelner Gruppenmitglieder im Besonderen zugrunde gelegt, welches sich insbesondere für die Gestaltung und Interpretation von Interaktionsprozessen im Gruppenkontext relevant zeigt. Es folgen Abschnitte mit Auseinandersetzungen zur Prozesshaftigkeit von Gruppendiskussionen, zu Moderationsstilen und -techniken sowie Reflexionen über mögliche Analysegegenstände und -verfahren. Dabei wird auch die Darstellung von Ergebnissen und Textpassagen diskutiert, in denen das Interaktionsgefüge mehrerer Diskussionsteilnehmer_innen sichtbar wird. Schließlich werden Einblicke in die Besonderheiten, Potenziale und Herausforderungen der Erhebung über Online-Plattformen gewährt. Zusammen geben beide Artikel einen Überblick über die wichtigsten Aspekte der Anwendung von Gruppendiskussionen im Bereich der Versorgungsforschung.

Ziel dieses Kapitels ist es, die erkenntnistheoretischen Potenziale und Herausforderungen der Delphi-Methode in den Gesundheitswissenschaften aus wissenssoziologischer Perspektive zu betrachten. Hierbei wird insbesondere Bezug genommen auf die Schriften von Ludwik Fleck zur sozialen Konstruktion wissenschaftlicher Tatsachen, Berger und Luckmann zur sozialen Konstruktion der Wirklichkeit, sowie von Thomas Kuhn zur gemeinschaftlichen Herstellung einer ‚normalen Wissenschaft‘ im Sinne eines akzeptierten wissenschaftlichen Paradigmas. Vor diesem Hintergrund werden unterschiedliche Betrachtungsweisen der Delphi-Methode im Sinne der Herstellung von Erkenntnisgewinn in der Gesundheitsforschung beleuchtet. Daran anknupfend sollen verschiedene Ansatze diskutiert werden, die in der Literatur als mogliche erkenntnis-theoretische und wissenschaftstheoretische/-philosophische Grundlagen der Delphi-Methode postuliert wurden – so wie deren Bedeutung fur die methodologische Gestaltung und praktische Umsetzung von Delphi-Verfahren. Auf der Grundlage dieser theoretischen Voruberlegungen werden erkenntnistheoretische Chancen und Potenziale, sowie auch Grenzen und Herausforderungen hinsichtlich der Verwendung von Delphi-Verfahren in den Gesundheitswissenschaften diskutiert.

Predictive and preventive medicine play an increasingly important role in public debates on health, providing cutting-edge technologies with the potential to measure and predict individual risks of getting ill. This leads to an ever-expanding definitional space between being &ldquo, healthy&rdquo, and being &ldquo, ill&rdquo, challenging the individual&rsquo, s everyday life, attitudes and perceptions towards the self and the process of health-related decision-making. &ldquo, How do the condition of &lsquo, being at risk&rsquo, and individual health literacy interrelate?&rdquo, is the leading question of the current contribution. Drawing on empirical qualitative data, collected by means of narrative interviews with persons at risk in four clinical fields, a bottom-up ethnographic and health sciences perspective on health literacy (with an emphasis on critical health literacy) is employed. The findings will be embedded within theoretical approaches dealing with power relations and communication in healthcare encounters, particularly Habermas&rsquo, theory of communicative action. The core outcome of our study is a concept for an overarching model of health literacy in the context of health-related risk prediction across indications, based on empirical insights gained through interpretative analysis of the four clinical domains.

Background Health literacy (HL) plays a crucial role in the maintenance and improvement of individual health. Empirical findings highlight the relation between a person's HL-level and clinical outcomes. However, the role of HL in persons at risk for coronary heart disease (CHD) and patients with CHD has not been researched conclusively. Objective The aim of this study was to review systematically the current evidence on HL, its dimensions (access to, understanding, appraisal and apply of health-related information), and its important influencing factors, with regard to CHD risk. Method We used a mixed-methods approach. Eligible articles needed to employ a validated tool for HL or mention the concept and at least one of its dimensions. After the screening process, 14 quantitative and 27 qualitative studies were included and referred to one or more dimensions of HL. Six observational studies measured HL with a validated tool. Results Findings suggest that patients with lower HL feel less capable to perform lifestyle changes, exhibit fewer proactive coping behaviors, are more likely to deny CHD, are generally older, are less often employed, have lower educational levels and lower socioeconomic status, experience faster physical decline, and use the healthcare system less, compared to patients with higher HL. Barriers to HL include inadequate provision of information by health providers, lack of awareness of the risk factors for CHD, perceived impairment of quality of life due to lifestyle changes, and negative experiences with the healthcare system. Facilitators include a good patient-physician relationship based on good communicative competences of health providers. Conclusions The concept of HL yields a promising potential to understand the process from obtaining information to actual health behavior change, and the results clearly indicate the need for more systematic research on HL in CHD patients and persons at risk.

Objective Numerous studies suggest that health literacy (HL) plays a crucial role in maintaining and improving individual health. Empirical findings highlight the relation between levels of a person's HL and her/his clinical outcome. To date, the role of HL in persons at-risk for psychosis has not been systematically reviewed. Methods We conducted a systematic review using a mixed-methods approach to analyse a variety of study types. Peer-reviewed publications were systematically searched in PUBMED, Cochrane Library, PsycINFO and Web of Science. Results The search string returned 10587 publications. After screening, 15 quantitative, four qualitative studies and two reviews were included. Only one study assessed HL as primary outcome, assessing knowledge and beliefs about psychosis among the general population. In the other studies, sub-dimensions of HL were investigated. None of the publications operationalized HL or it's sub-dimensions with a validated measure. Conclusions A lack of understanding of their condition, and fear of stigmatization, were associated with a delay in help-seeking among people with clinical-high-risk state for psychosis. Family members, school personnel, general practitioners and the internet play a crucial role in the HL process. Considerable barriers in obtaining adequate specialist support emphasize the urgent need of a "HL environment" for persons at risk for psychosis.

Background: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. Aim: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. Design: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. Data sources: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. Results: A total of 30 empirical studies (1997–2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a ‘round’ or a ‘modified Delphi study’. Conclusion: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.

Health services researchers focus on the players, structures and impact of health care in "real life". They investigate how social aspects, financing, organizational structures, technologies and personal attitudes affect the process and outcomes of health care. Qualitative research methods are used here, which address how people act according to their unique living conditions (outside the context of experimental studies). Different methods of debriefing groups are essential for qualitative health services research. In 2 subsequent articles, we aim to outline the diverse facets and possible range of implementation of the above-mentioned methods, in order to highlight the potential of debriefing groups in health services research (focus groups or group discussions) using these methods. In the current article, we would like to encourage researchers to reflect on relevant topics such as the selection of an appropriate method, the planning and undertaking of investigations including sampling methods, and questions regarding ethics and privacy. A follow-up article (in preparation) will deal with theoretical considerations of the term "group", as well as with the process of moderating discussions, methods of analyzing data and (qualitative) online research.Versorgungsforscher_innen beschäftigen sich mit den Akteur_innen, Strukturen und Auswirkungen von Gesundheitsversorgung. Dies umfasst z. B. die Frage, wie soziale Faktoren, Finanzierungssysteme, Organisationsstrukturen, Technologien und persönliche Verhaltensweisen sich auf die Akteure und Ergebnisse des Versorgungsprozesses auswirken. Im Zuge dessen finden auch qualitative Methoden, die das Handeln von Menschen unter ihren jeweiligen Lebensbedingungen und nicht im klinisch-experimentellen Kontext betrachten, Anwendung. Gruppenverfahren gehören dabei zu den grundlegenden Erhebungszugängen der qualitativen Versorgungsforschung. Um die Potenziale von Gruppenverfahren (Gruppendiskussion bzw. Fokusgruppen) innerhalb der Versorgungsforschung sichtbar zu machen, sollen diese im Rahmen von 2 Artikeln in ihren Facetten und bezogen auf die Anwendung in der Versorgungsforschung dargestellt werden. Wir möchten mit diesem ersten Artikel Versorgungsforscher_innen dazu anregen, über bestimmte Fragen zu Wahl und Varianten der Methode sowie zur Planung von Gruppenverfahren nachzudenken, wie z. B. Stichprobenbildung und Gruppenzusammensetzung, aber auch die konkrete Datenerhebung und Aspekte des Datenschutzes. Im (in Vorbereitung befindlichen) Folgeartikel zum Thema Gruppendiskussion wird eine theoretische Betrachtung des Begriffs der ‚Gruppe‘ ebenso im Fokus stehen wie die Moderation, unterschiedliche mögliche Auswertungsverfahren/-strategien und der Bereich der qualitativen Online-Forschung.

Background Numerous studies suggest that health literacy (HL) plays a crucial role in maintaining and improving individual health. Furthermore, empirical findings highlight the relation between levels of a person’s HL and clinical outcomes. So far, there are no reviews, which investigate HL in individuals at-risk for psychosis. The aim of the current review is to assess how individuals at risk of developing a first episode of psychosis gain access to, understand, evaluate and apply risk-related health information. Methods A mixed-methods approach was used to analyze and synthesize a variety of study types including qualitative and quantitative studies. Search strategy, screening and data selection have been carried out according to the PRISMA criteria. The systematic search was applied on peer-reviewed literature in PUBMED, Cochrane Library, PsycINFO and Web of Science. Studies were included if participants met clinical high risk criteria (CHR), including the basic symptom criterion (BS) and the ultra-high risk (UHR) criteria. The UHR criteria comprise the attenuated psychotic symptom criterion (APS), the brief limited psychotic symptom criterion (BLIPS) and the genetic risk and functional decline criterion (GRDP) Furthermore, studies must have used validated HL measures or any operationalization of the HL’s subdimensions (access, understanding, appraisal, decision-making or action) as a primary outcome. A third inclusion criterion comprised that the concept of HL or one of the four dimensions was mentioned in title or abstract. Data extraction and synthesis was implemented according to existing recommendations for appraising evidence from different study types. The quality of the included studies was evaluated and related to the study results. Results The search string returned 10587 papers. After data extraction 15 quantitative as well as 4 qualitative studies and 3 reviews were included. The Quality assessment evaluated 12 publications as “good”, 9 as “fair” and one paper as “poor”. Only one of the studies assessed HL with as primary outcome. In the other studies, the five different subdimensions of HL were investigated as a secondary outcome respectively mentioned in the paper. “Gaining Access” was examined in 18 of the 22 studies. “Understanding” has been assessed in 7 publications. “Appraise” was examined in 9 studies. “Apply decision making” and “Apply health behavior” were investigated in 1 of 8 studies. Since none of the included publications operationalized neither HL nor the subdimensions of HL with a validated measure, no explicit influencing factors could be found. Discussion Quantitative and qualitative evidence indicates that subjects at-risk for psychosis describe a lack of understanding about their state and fear stigmatization that might lead to dysfunctional coping strategies, such as ignoring and hiding symptoms. Affected subjects are eager to be informed about their condition and describe favoured channels for obtaining information. The internet, family members, school personnel and GP’s play a crucial role in gain access to, understand, evaluate and apply risk-related health information. The results clearly highlight that more research should be dedicated to HL in individuals at risk of developing a psychosis. Further studies should explore the relation between HL and clinical outcomes in this target population by assessing the underlining constructs with validated tools.

Context In 2011, the World Health Organization (WHO) published the policy guidelines Ensuring Balance in National Controlled Substances Policies—Guidance for Availability and Accessibility of Controlled Medicines , presenting a revised version of the previous guidelines from 2000. Objectives To describe the consensus process that guided the revision of the guidelines. Methods A four-stage revision process was undertaken with a panel of 29 international experts from palliative care, public health, and harm reduction: 1) a qualitative inventory of required changes by means of a structured checklist, 2) & 3) a two-round online consensus Delphi process about the draft revision of the guidelines, and 4) a WHO advisory meeting for the discussion of remaining controversies and final issues. Results The qualitative inventory resulted in a draft revision of the guidelines meeting requirements on different levels, such as a broader focus and more accurate evidence. Operationalization of the guidelines was improved by specifying measures, procedures, and responsibilities. The Delphi procedure provided concrete indications for the rewording of both the guidelines and the associated text. During the advisory meeting, any persistent disagreements were systematically discussed to achieve consensus on the new version of the guidelines. Conclusion The four-stage multimethod consensus process resulted in a substantial revision to the WHO guidelines. This takes into account the increase in knowledge about opioid medication since the first edition of the guidelines. Disagreement emerging from the process underlines the complexity of preparing guidance because of the delicate balance between need and control.

Einleitung: Der Gesundheitsmonitor der Bertelsmann Stiftung erhebt seit 2001 in regelmasigen Abstanden bevolkerungsreprasentative Daten zu verschiedenen Aspekten der Gesundheitsversorgung. Erstmalig wurde in der Befragungswelle 2011 der Themenkomplex Versorgung am Lebensende integriert. Methodik: Standardisierte schriftliche Befragung von 1782 gesetzlich versicherten Personen in Deutschland. Die Datenauswertung erfolgte deskriptiv, zusatzlich wurden bivariate und multivariate Analysen zu Einflussen soziookonomischer und gesundheitsbezogener Merkmale durchgefuhrt. Ergebnisse: Die Ergebnisse geben die Sichtweisen und Einstellungen der Befragten wieder, was Sterben unter wurdigen Bedingungen bedeutet und welche Faktoren wichtig sind, dies zu ermoglichen. Weiterhin wird der Anteil der Menschen, die (k)eine Patientenverfugung verfasst haben, erhoben sowie wesentliche Grunde fur beziehungsweise gegen das Verfassen einer Patientenverfugung erortert. Zuletzt wird das Meinungsbild der Bevolkerung zur Palliativversorgung beleuchtet – was verstehen Menschen darunter und wie wurde ihre Ansicht gepragt? Diskussion: Die erhobenen Ergebnisse werden vor dem Hintergrund des aktuellen Forschungsstands diskutiert sowie in den Kontext der fachlichen und gesundheitspolitischen Entwicklungen gestellt, wie z. B. der Charta zur Betreuung Schwerstkranker und Sterbender.

Hintergrund: In der Forschung im Bereich der Palliativversorgung ist es aus ethischen, ökonomischen oder praktischen Gründen nicht immer angemessen, Evidenz hinsichtlich guter Praxis mittels randomisierter kontrollierter Studien oder großer Beobachtungsstudien zu erlangen. Viele Leitlinien[zum vollständigen Text gelangen Sie über die oben angegebene URL], 15. Deutscher Kongress für Versorgungsforschung

Background There are various definitions and diagnostic criteria for dementia, leading to discrepancies in case ascertainment in both clinical practice and research. We reviewed the different definitions, approaches and measurements used to operationalize dementia in health care studies in German nursing homes with the aim of discussing the implications of different approaches. Methods We conducted a systematic search of the MEDLINE and CINAHL databases to identify pre-2016 studies conducted in German nursing homes that focused on residents with dementia or cognitive impairment. In- or exclusion of studies were consented by all authors; data extraction was independently carried out by 2 authors (RP, SJ). The studies’ sampling methods were compared with respect to their inclusion criteria, assessment tools and methods used to identify the study population. Results We summarized case ascertainment methods from 64 studies. Study participants were identified based on a diagnosis that was evaluated during the study, or a recorded medical dementia diagnosis, or a recorded medical diagnosis either with additional cognitive screenings or using screening tests exclusively. The descriptions of the diagnostics that were applied to assess a diagnosis of dementia were not fully transparent in most of the studies with respect to either a clear reference definition of dementia or applied diagnostic criteria. If reported, various neuropsychological tests were used, mostly without a clear rationale for their selection. Conclusion Pragmatic considerations often determine the sampling strategy; they also may explain the variances we detected in the different studies. Variations in sampling methods impede the comparability of study results. There is a need to consent case ascertainment strategies in dementia studies in health service research in nursing homes. These strategies should consider resource constraints and ethical issues that are related to the vulnerable population of nursing home residents. Additionally, reporting about dementia studies in nursing homes need to be improved. If a diagnosis cannot be evaluated based on either ICD or DSM criteria, the study population may not be reported as having dementia. If a diagnosis is evaluated based on ICD or DSM criteria within the study, there is a need for more transparency of the diagnostic process. Electronic supplementary material The online version of this article (doi:10.1186/s12877-016-0249-7) contains supplementary material, which is available to authorized users.

Background:People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.Methods:To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.Results:Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.Conclusions:Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.

Recently, six key targets for public health initiatives to improve palliative care in Germany were defined. This article reports the initial results of a follow-up study aiming at developing concrete measures to achieve these targets. We carried out a three-round Delphi study with stakeholders acting on the meso- and macro-levels of the German healthcare system (e.g., representatives of patient organizations, health insurance funds, politics, medical and nursing associations). In the first Delphi round, participants proposed measures to achieve the six key targets using free-text answers. The answers were analyzed with a qualitative-descriptive approach. In total, 107 stakeholders responded to the first Delphi round. After data reduction, 37 measures were extracted and grouped into six major categories: family carers, qualification, quality, public relations, services, and coordination. The range of measures on the different levels of policy, health care, and education presents a substantiated basis for the elaboration of targeted public health action plans to improve palliative care. Prioritization of measures in the second and third Delphi rounds will provide empirical support for decision making.

For more than 30 years, the term “palliative care” has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term ‘palliative medicine’ and ‘palliative care’ in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept ‘palliative care’. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.