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

Highlights

• 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.

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.

Introduction

During the past decades, the number of non-Western ethnic minority groups living in Western countries has increased rapidly [1,2]. Ethnic minority groups can be defined as numerically smaller, non-dominant groups distinguished by ‘shared cultural heritage, including values, traditions, and often language’ [3; p.274]. The current situation in Western countries is best described by the concept of superdiversity. On the one hand, superdiversity refers to the growth of ethnic minority groups from different countries of origin. On the other hand, it refers to the internal fragmentation of ethnic minority groups, leading to differences within these groups [4,5].

As part of their acculturation process, non-Western ethnic minority groups often adapt their lifestyle to the Western lifestyle, which is associated with an increased risk of developing chronic diseases such as hypertension, diabetes, and cancer [2]. For cancer, there is evidence that ethnic minorities from non-Western countries are at higher risk for certain types of cancer compared to the Western population [2,6], including stomach cancer, liver cancer, and lung cancer [2]. As a consequence, encounters between Western healthcare providers and cancer patients from non-Western ethnic minority groups are on the increase [1].

A cancer diagnosis entails a physical and psychological burden for patients, and treatment outcomes are often uncertain [7]. Hence, doctor-patient communication that is tailored to patients’ preferences and needs is vital in oncology, as this has been shown to be associated with lower psychological distress and higher patient satisfaction [8]. However, ethnic minority non-Western cancer patients often experience difficulties in communicating with their doctor, due to cultural, religious, and linguistic differences with their providers [[9], [10], [11]]. These communication difficulties may contribute to low patient satisfaction, poor treatment adherence and suboptimal health outcomes [1]. In order to provide ethnic minority cancer patients with the best quality cancer care, it is of utmost importance to take patients’ preferences and needs regarding information and participation in decision-making (in the remainder of the review referred to as ‘participation’) into account [12]. Superdiversity, in turn, adds another barrier to doctor-patient communication, as in the heterogeneous pattern of ethnic minority groups, both between ethnic minority groups and within ethnic minority groups differences regarding preferences and needs are expected to exist. This heterogeneity, in turn, implies that communication should be tailored to the preferences and needs of individual ethnic minority patients [13].

Information preferences and needs of cancer patients vary from, for example, the preference and need to receive information about diagnosis or treatment options, to the preference and need to receive information about one’s prognosis [14]. Unmet information needs among the general population of cancer patients primarily concern disease and treatment-related information [15], which is vital for patients to be able to participate in treatment decision-making. Meeting patients’ information preferences and needs results in more positive patient outcomes, such as a better health-related quality of life, and less depression and anxiety [16]. As for participation preferences and needs of cancer patients, passive, shared, and active participation in decision-making can be distinguished [17]. Passive decision-making refers to patients deferring decisions to their physician and/or caregiver, active decision-making refers to patients making all decisions by themselves, and shared decision-making (SDM) implies that the patient and physician share knowledge, values, and preferences, ultimately leading to mutual healthcare choices [[18], [19], [20]]. SDM has several benefits over passive and active participation [[19], [20], [21], [22], [23]], among which higher physician and patient satisfaction, increased quality of life, better functional and clinical outcomes, and more adherence to treatment plans [19,20]. Moreover, SDM is related to a stronger doctor-patient relationship and diminished stress, disbelief and the feeling of loss of control over one’s life [19,20,23].

To date, several studies have investigated information and participation preferences and needs of Western cancer patients [7,8,15,[24], [25], [26], [27]]. However, a systematic overview of the information and participation preferences and needs and underlying associated factors among non-Western ethnic minority cancer patients is lacking [1,28,29]. Insight into the preferences and needs of ethnic minority patients, and the factors that are associated with these preferences and needs, however, is relevant as doctor-patient communication should be tailored to individual patients’ preferences and needs if we want to provide these patients with optimal oncological care. To our knowledge, only one review study investigated SDM among ethnic minority cancer patients [30]. However, this review only focused on behavior instead of preferences and needs. Hence, healthcare providers remain uncertain about ethnic minority patients’ preferences and needs, which possibly leads to suboptimal doctor-patient communication. The aim of our study is to provide a systematic review of research on information and participation preferences and needs of non- Western ethnic minority cancer patients living in Western countries. In accordance with above-mentioned definition of ethnic minorities, in this review ‘ethnic minority’ refers to ‘numerically smaller, non-dominant groups distinguished by shared cultural heritage, including values, traditions, and often language’ [3; p.274]. Furthermore, in this review ‘non-Western’ covers patient populations from African, Asian, Indian-American, Middle-Eastern, and Latin-American descent. Such an overview will help healthcare providers to take these preferences and needs better into account during doctor- patient communication. In addition, it will show which factors are associated with their information and participation preferences and needs. Ultimately, this overview could help healthcare providers to better tailor communication to the individual ethnic minority cancer patient.