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

Abstract

Objective: To provide an overview of information and participation preferences and needs of non-Western ethnic minority cancer patients living in Western countries.

Methods: 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.

Results: 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.

Conclusion: 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.

Practice implications: To better fulfil ethnic minority patients'/survivors' preferences and needs healthcare providers should elaborate upon these and tailor their information- provision accordingly.

Keywords: Cancer; Doctor-patient communication; Ethnic minorities; Information preferences; Participation preferences.