Objective: To construct the underlying value structure of shared decision making (SDM) models. Method: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz’s value theory to define values in SDM and to investigate value relations. Results: We identified and defined eight values and developed three themes based on their relations: shared control, a safe and supportive environment, and decisions tailored to patients. We constructed a value structure based on the value relations and themes: the interplay of healthcare professionals’ (HCPs) and patients’ skills [Achievement], support for a patient [Benevolence], and a good relationship between HCP and patient [Security] all facilitate patients’ autonomy [Self-Direction]. These values enable a more balanced relationship between HCP and patient and tailored decision making [Universalism]. Conclusion: SDM can be realized by an interplay of values. The values Benevolence and Security deserve more explicit attention, and may especially increase vulnerable patients’ Self-Direction. Practice implications: This value structure enables a comparison of values underlying SDM with those of specific populations, facilitating the incorporation of patients’ values into treatment decision making. It may also inform the development of SDM measures, interventions, education programs, and HCPs when practicing.
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.
Purpose: Self-managed institutional homeless programmes started as an alternative to regular shelters. Using institutional theory as a lens, we aim to explore the experiences of stakeholders with the institutional aspects of a self-managed programs.Method: The data we analysed (56 interviews, both open and semi-structured) were generated in a longitudinal participatory case-study into JES, a self-managed homeless shelter. In our analysis we went back and forth between our empirical data and theory, using a combination of systematic coding and interpretation. Participants were involved in all stages of the research.Results: Our analysis revealed similarities between JES and regular shelters, stemming from institutional similarities. Participants shared space and facilities with sixteen people, which caused an ongoing discussion on (enforcement of) rules. Participants loathed lack of private space. However, participants experienced freedom of choice over both their own life and management of JES and structures were experienced more fluid than in regular care. Somestructures also appeared stimulated self-management.Conclusion: Our analysis showed how an institutional context influences self-management and suggested opportunities for introducing freedom and fluidity in institutional care.
