Information and participation preferences and needs of non-Western ethnic minority cancer patients and survivors: A systematic review of the literature

• Published in: Patient education and counseling 2019-04, Vol.102 (4), p.631-650
• Main Authors: Yılmaz, Nida Gizem, Schouten, Barbara C., Schinkel, Sanne, van Weert, Julia C.M.
• Format: Article
• Language: English
• Subjects: Cancer; Doctor-patient communication; Ethnic minorities; Information preferences; Nursing; Participation preferences
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2018.11.018

•Non-Western patients/survivors have high information preferences/needs.•Latin-Americans and African-Americans primarily prefer shared/active participation.•Asians and Middle-Easterners primarily prefer passive participation.•Level of acculturation is positively related to patients’ preferences.•The relationship between identified factors and preferences needs further research. To provide an overview of information and participation preferences and needs of non-Western ethnic minority cancer patients living in Western countries. A systematic literature review was conducted using the databases PsycINFO, PubMed, CINAHL, and EMBASE. Thematic analysis was carried out to synthesize data, allowing for identification of important themes and synthesis of both qualitative and quantitative studies. Forty-four papers were included. Non- Western ethnic minority cancer patients/survivors have high information preferences and needs regarding topics ranging from diagnosis to treatment and from prevention to the healthcare system. Younger, female, and unmarried patients/survivors, and patients with better language proficiency reported higher information preferences. Latin-American and African-American patients/survivors primarily prefer shared or active participation. Asian and Middle-Eastern patients/survivors prefer primarily passive participation. Younger patients, and those with a higher level of education and acculturation were more likely to prefer active or shared participation. Further (quantitative) research on factors associated with patients’ preferences is needed in order to better understand the underlying reasons of information and participation preferences and needs of diverse non-Western ethnic minority cancer patients. To better fulfil ethnic minority patients’/survivors’ preferences and needs healthcare providers should elaborate upon these and tailor their information- provision accordingly.