Shared decision making with ethnic minorities in oncology: An interview study

Patient Education and Counseling, vol. 147, pp. 109539

Abstract

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.

Authors 9

1. Roukayya Oueslati corresponding Aachen

   Leiden University Medical Center · The Hague University of Applied Sciences

   Affiliation as printed

   Department of Ethics and Law of Health Care, Leiden University Medical Center, Leiden, the Netherlands; Research Group Relational Care, Department of Health, Nutrition and Sport, The Hague University of Applied Sciences, The Hague, the Netherlands; Research Group Oncological Care, Department of Health, Nutrition and Sport, The Hague University of Applied Sciences, The Hague, the Netherlands. Electronic address: r.oueslati@lumc.nl

2. Asiye Gedik

   Erasmus MC · Erasmus MC Cancer Institute

   Affiliation as printed

   Department of Medical Oncology, Erasmus Medical Center Cancer Institute, Erasmus University Medical Center, Rotterdam, the Netherlands

3. Ria Reis Aachen

   University of Cape Town · Leiden University Medical Center · Amsterdam Institute for Global Health and Development

   Affiliation as printed

   Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands; Amsterdam Institute of Global Health and Development, Amsterdam, the Netherlands; Children's Institute, University of Cape Town, Cape Town, South Africa

4. Yvonne van Zaalen

   The Hague University of Applied Sciences

   Affiliation as printed

   Research Group Relational Care, Department of Health, Nutrition and Sport, The Hague University of Applied Sciences, The Hague, the Netherlands

5. Joke C. Korevaar

   The Hague University of Applied Sciences

   Affiliation as printed

   Research Group Oncological Care, Department of Health, Nutrition and Sport, The Hague University of Applied Sciences, The Hague, the Netherlands

6. Meralda T. Slager

   Avans University of Applied Sciences

   Affiliation as printed

   Centre of Expertise Perspective in Health, Avans University of Applied Sciences, the Netherlands

7. Barbara C. Schouten

   University of Amsterdam

   Affiliation as printed

   Department of Communication Science, Amsterdam School of Communication Research, University of Amsterdam, Amsterdam, the Netherlands

8. Anne Margarethe Stiggelbout Aachen Department of Biomedical Data Sciences

   Leiden University Medical Center

   Affiliation as printed

   Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, the Netherlands

9. Dorothea Petra Touwen Aachen Department of Ethics and Law of Health Care

   Leiden University Medical Center

   Affiliation as printed

   Department of Ethics and Law of Health Care, Leiden University Medical Center, Leiden, the Netherlands