Objective: This study aims to 1) explore experiences of ethnic minority patients and their relatives regarding shared decision making (SDM) in oncological hospital care, alongside healthcare professionals' (HCPs) experiences of engaging in SDM with ethnic minority patients; 2) identify opportunities to improve SDM for ethnic minorities in oncology, if needed, by linking the findings to a previously developed value structure.
Methods: For this purpose, we interviewed ethnic minority patients (n = 22), relatives (n = 11), and HCPs (n = 14). Using reflexive thematic analysis, we applied Schwartz's value theory, adapted to the context of SDM, to code and analyze the interviews.
Results: From the data, we developed three themes: 1) Factors that empower(ed) and disempower(ed) patients in SDM. Knowledge, skills, and competences of both HCP and patient [i.e. Achievement], support [i.e. Benevolence], and a good HCP-patient relationship [i.e. Security] empower patients. A lack of these three disempowers them; 2) Individualizing treatment decisions. Participants individualized treatment decisions through deliberation, negotiation, and choosing; 3) HCPs' limited insight into patients' context. HCPs experienced this due to a lack of cultural competences and perceived cultural differences.
Conclusion: SDM for ethnic minorities can be enhanced by strengthening HCPs' cultural competencies, increasing the availability of culturally and linguistically tailored information and support, and fostering ongoing relationship-building efforts. These strategies empower patients, enhance HCPs' insight into ethnic minority patients' context, and contribute to more individualized treatment decisions.
Practice implications: We recommend educational programs to increase HCPs' cultural sensitivity in SDM, developing campaigns to focus more on the needs of ethnic minority populations, and incorporating culturally and linguistically tailored support within hospital systems. Importantly, efforts should avoid overemphasizing cultural differences, as many empowering and disempowering factors also apply to the general population, but should be responsive to cultural aspects where relevant.
Objectives: A Bayesian network, ENDORISK, estimates a personalized risk of lymph node metastases (LNM) in patients with endometrial cancer (EC). A qualitative study was conducted to assess the perspectives of patients with EC on the use of ENDORISK in preoperative counselling.
Methods: Content analysis of transcribed semi-structured interviews with 19 patients treated for EC, purposively sampled between 2020 and 2023 from two regional oncology networks in the Netherlands RESULTS: Patients appreciated the potential use of ENDORISK in preoperative counselling to provide information on factors influencing their disease, risk of LNM, and treatment. Use of the model could increase their involvement in decision making on treatment. Emphasizing on the personalized nature of the risk estimation and the potential role of ENDORISK in the decision-making process on treatment could improve explanation of the model.
Conclusions: Using ENDORISK in preoperative counselling could potentially increase patient involvement in shared decision making for EC care. A simple explanation of this model is needed and the professional opinion of clinicians remains important in the treatment process.
Practice implications: In the development and implementation of clinical risk models it is important to include the perspective of the envisioned patient population to ensure clinical relevancy and explainability. This study provides an explorative groundwork for further investigations in the development and implementation of personalized risk estimation models such as ENDORISK.
Objective: Access to accurate and appropriate information is crucial for patients' wellbeing and participation in decision-making. Patients' information needs are subject to change; this concerns the content as well as the amount, timing and mode of information delivery. Moreover, patients differ in their information processing capacity. Consequently, healthcare professionals should preferably tailor their information to individual patients' preexisting knowledge, cognitive abilities, as well as their emerging information needs. Based on own research and experience in medical teaching, this discussion paper aims to critically reflect on what we know about person-centered communication practices that promote such tailoring of information, i.e. providing patients with information that can help them to manage and understand their symptoms or disease.
Discussion: For various reasons, tailoring can be challenging. Recommendations are provided for healthcare professionals who wish to identify their patients' specific information needs as regards certain topics and the amount of detail they desire. Additionally, communication practices are discussed that promote patients' understanding and recall of information.
Conclusion: Providing patients with information that can help them requires curiosity, creativity and the skillful use of various communication practices.

