Background: Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim: In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design: This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method: Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion: The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.
Background: Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim: In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design: This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method: Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion: The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.
BackgroundTo use advanced medical technologies (AMTs) correctly and safely requires both specialist knowledge and skills, and an awareness of risks and how those can be minimized. Reporting safety concerns about AMTs in home care can contribute to an improved quality of care. The extent to which a health care organization has integrated the reporting, evaluation and learning from incidents is a key element of that organization's patient safety culture.ObjectivesTo explore nurses' experiences regarding the education followed in the use of AMTs in the home setting, and their organizations' systems of reporting.DesignDescriptive cross-sectional design.Methods209 home care nurses from across the Netherlands who worked with infusion therapy, parenteral nutrition and/or morphine pumps responded to the online questionnaire between July 2018 and February 2019. The analysis of the data was mainly descriptive.ResultsEducational interventions that are most often used to learn how to use AMTs were, as an average over the three AMTs, instruction by a nurse (71%), practical training in the required skills (71%) and acquiring information to increase theoretical knowledge (69%). Considerable attention is paid to patient safety (88%) and the home setting (89%). However, a substantial proportion of the nurses (up to 29%) use AMTs even though they had not been tested on their skills. 95% of the respondents were well acquainted with the incident reporting protocol of their organization, but only 49% received structural or regular feedback on any actions taken as a result of event reporting.ConclusionsThis study revealed aspects of nurses' education that imply risk factors for patient safety. Practical training is not always given, additional or retraining is often voluntary, and the required skills are not always tested. However, the results show that nurses do have a good awareness of patient safety. Incidents are mainly discussed within the team, but less at the organizational level.
