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.
The concept of complexity is used in palliative care (PC) to describe the nature of patients’ situations and the extent of resulting needs and care demands. However, the term or concept is not clearly defined and operationalised with respect to its particular application in PC. As a complex problem, a care situation in PC is characterized by reciprocal, nonlinear relations and uncertainties. Dealing with complex problems necessitates problem-solving methods tailored to specific situations. The theory of complex adaptive systems (CAS) provides a framework for locating problems and solutions. This study aims to describe criteria contributing to complexity of PC situations from the professionals’ view and to develop a conceptual framework to improve understanding of the concept of “complexity” and related elements of a PC situation by locating the complex problem “PC situation” in a CAS. Qualitative interview study with 42 semi-structured expert (clinical/economical/political) interviews. Data was analysed using the framework method. The thematic framework was developed inductively. Categories were reviewed, subsumed and connected considering CAS theory. The CAS of a PC situation consists of three subsystems: patient, social system, and team. Agents in the "system patient" are allocated to further subsystems on patient level: physical, psycho-spiritual, and socio-cultural. The "social system" and the "system team" are composed of social agents, who affect the CAS as carriers of characteristics, roles, and relationships. Environmental factors interact with the care situation from outside the system. Agents within subsystems and subsystems themselves interact on all hierarchical system levels and shape the system behaviour of a PC situation. This paper provides a conceptual framework and comprehensive understanding of complexity in PC. The systemic view can help to understand and shape situations and dynamics of individual care situations; on higher hierarchical level, it can support an understanding and framework for the development of care structures and concepts. The framework provides a foundation for the development of a model to differentiate PC situations by complexity of patients and care needs. To enable an operationalisation and classification of complexity, relevant outcome measures mirroring the identified system elements should be identified and implemented in clinical practice.
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). 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. 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. 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.
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 “healthy” and being “ill”, challenging the individual’s everyday life, attitudes and perceptions towards the self and the process of health-related decision-making. “How do the condition of ‘being at risk’ and individual health literacy interrelate?” 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’ 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.
13 February 2023 in Prävention und Gesundheitsförderung
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.