Trust and world view in shared decision making with indigenous patients: A realist synthesis

Abstract Introduction How shared decision making (SDM) works with indigenous patient values and preferences is not well understood. Colonization has affected indigenous peoples' levels of trust with institutions, and their world view tends to be distinct from that of nonindigenous people. Building on a programme theory for SDM, the present research aims to refine the original programme theory to understand how the mechanisms of trust and world view might work differently for indigenous patients. Design We used a six‐step iterative process for realist synthesis: preliminary programme theory development, search strategy development, selection and appraisal of literature, data extraction, data analysis and synthesis, and formation of a revised programme theory. Data Sources Searches were through Medline, CINAHL, and the University of Saskatchewan iPortal for grey literature. Medline and CINAHL searches included the University of Alberta Canada‐wide indigenous peoples search filters. Data synthesis Following screening 731 references, 90 documents were included for data extraction (53 peer reviewed and 37 grey literature). Documents from countries with similar colonization experiences were included. Results A total of 518 context‐mechanism‐outcome (CMO) configurations were identified and synthesized into 21 CMOs for a revised programme theory. Demographics, indigenous world view, system and institutional support, language barriers, and the macro‐context of discrimination and historical abuse provided the main contexts for the programme theory. These inspired mechanisms of reciprocal respect, perception of world view acceptance, and culturally appropriate knowledge translation. In turn, these mechanisms influenced the level of trust and anxiety experienced by indigenous patients. Trust and anxiety were both mechanisms and intermediate outcomes and determined the level of engagement in SDM. Conclusion This realist synthesis provides clinicians and policymakers a deeper understanding of the complex configurations that influence indigenous patient engagement in SDM and offers possible avenues for improvement.


KEYWORDS
indigenous, patients, realist review, shared decision making, trust, world view

Early encounters between Europeans and indigenous peoples in what
is now Canada resulted in peace and friendship treaties, commercial agreements, military alliances, and the numbered treaties. 1 In the late 1800s, the implementation of these mutually beneficial agreements began to change. Indian Residential Schools and government regulations of indigenous identity (eg, the Indian Act) contributed to indigenous institutional and cultural distrust of government policies. [2][3][4][5] Multilayered discrimination has been linked to current negative health outcomes 6,7 and disparities [8][9][10][11] in health services to indigenous populations. Power imbalances and a shortage of health-care provider (HCP) education regarding indigenous world views are believed to add to these inequalities. 12,13 For a definition of indigenous peoples and other key terms used in our research, see Table 1.
Shared decision making (SDM) emphasizes equalizing power between patients and HCPs to create more equitable health care. 16 However, limited research exists to examine if and how SDM works with indigenous patient values and preferences. [19][20][21] For instance, a systematic review identified one study that examined SDM with indigenous patients where a generic model was applied without cultural adaptation. 22 When culturally adapted SDM tools have been implemented, 20 indigenous women felt the tools were from a Westernized lens and lacked incorporation of indigenous beliefs. 19 This suggests that further work is required to implement an SDM model that meets the needs of indigenous patients.
In an earlier realist synthesis, we explored the following: "In which situations, how, why, and for whom does SDM between patients and HCPs contribute to improved engagement in the shared decisionmaking process?" 23 We outlined eight key mechanisms that impact engagement in the SDM process. 24 How we used this initial programme theory as the basis of the present study to confirm, refine, or refute the findings when applied to indigenous patients is discussed in Section 2.
On the basis of qualitative interviews with indigenous patients with cancer, we recognized that indigenous patients often hold different world views from those of HCPs and the health-care system. 25 To understand how trust and perceptions of world view work with indigenous patients to impact SDM, our research question was as follows: "in a healthcare consultation involving Indigenous patients, for whom, why and in what situations do trust and perceptions of world view influence patient engagement to achieve SDM?" 2 | METHODS

| Methodology: Realist synthesis
Realist syntheses aim to explain how, why, for whom, and in which circumstances an intervention succeeds or fails. [26][27][28] To achieve this,  29 The benefit of realist syntheses is that they are theory based, which enables researchers to develop or test a programme theory. [28][29][30]  The first step, the preliminary programme theory development, established the rationale for this study. 23 Our first project developed an SDM programme theory by exploring the following: "In which situations, how, why, and for whom does SDM between patients and HCPs contribute to improved engagement in the shared decisionmaking process?" 24 The result was eight key mechanisms that impact engagement in SDM (see Figure 1). 23 Shared decision making, in this sense, is considered an intervention that results in positive outcomes for the patient, the practitioner, and the health-care system. 18,34,35 Our initial programme theory served as the theoretical base in which we confirmed, refined, or refuted the findings when applied to an indigenous context. 23 Indigenous peoples have been exposed to colonial forces that have affected their levels of trust with institutions, [3][4][5] and at the same time, they have a world view that tends to be distinct from that of nonindigenous people. [36][37][38] Therefore, we chose to focus on the mechanisms of trust and world view because of the unique characteristics of indigenous patients.

| Systematic search strategy
Searches were through Medline, and CINAHL, and the University of Saskatchewan iPortal, which we used as our primary database for grey literature. Medline and CINAHL searches included the University of Alberta Canada-wide indigenous peoples search filters. In addition to these filters, search terms for all databases included the following: "Indians, north american/," "aboriginal*.mp.," "native*.mp.," "Health services, indigenous/," "exp American Native Continental Ancestry Group/or Oceanic Ancestry Group/," "indigenou*.mp." "choice behavior/or choice behavio*.mp.," "decision making/," "decision*.
mp.," "(choic* or prefence*).mp.," "culture/or culture.mp. or world view.mp. or world view.mp.," and "trust/or trust.mp." iPortal search criteria included "Decision Making," "trust," "world view," and "worldview." Reviewers relied on realist relevance and rigour criteria as outlined by Pawson to assess the applicability and methodological appropriateness, credibility, trustworthiness, and methodologically sound in relation to the research design. 26 Relevance was determined by whether the source could contribute to refinement of the theory, while rigour incorporated the credibility and trustworthiness of the source. All screening and extraction of peer-reviewed documents were conducted through Covidence, while grey literature analysis was conducted in NVivo 11 and Microsoft Excel.

| Search process
Two authors independently read each article and extracted CMOs. The process of identifying excerpts was guided by our main research questions with the intent of identifying key elements of trust and world view. The extraction template included identification of the contexts, mechanisms, and outcomes; a brief description of the paper; and bibliographic information. The CMOs were entered into either Covidence (peer-reviewed sources) or NVivo 11 and Microsoft Excel (grey literature) for indexing. We then linked CMOs to a preliminary analytic framework that was iteratively reviewed and adjusted. 39 The preliminary framework was based on our initial programme theory where CMOs were analysed according to how they confirmed, refined, or refuted the theory. The disconfirming data, in particular, illustrated the distinct characteristics of this group of patients. The process of analysis and synthesis is described in greater detail in Section 3.

| Document characteristics
The search resulted in 731 references (see Figure 2). After de-

| Analysis and synthesis
Data, in the form of CMOs, were extracted from all screened sources.
A total of 518 CMO configurations were identified. These CMOs included a mechanism of trust and/or world view and intermediate outcomes. The CMOs were then synthesized, based on demiregularities (ie, patterns). 24 We iteratively classified the demiregularities into contexts and mechanisms on the basis of a process by Pawson and colleagues. 24 Throughout the synthesis process, demi-regularities within the data were refined based on barriers or enablers to SDM among indigenous patients. 39 When the final synthesis was complete, 21 key CMOs had been identified. The next step in analysis was to use the initial programme theory as the template to contrast with our findings. We determined how well each of these context and mechanisms fit with the existing theory and how many were unique to the data from indigenous patients.
While some of the mechanisms within the existing theory still applied (ie, trust, world view, and anxiety), others acted as contexts for indigenous patients. For example, the mechanism "perception of time" was more appropriate as a context within indigenous world view. In addition, "perception of other party capacity" was refined as part of the mechanism "reciprocal respect" in the revised programme theory. In the final analysis, the existing theory was significantly refined to reflect indigenous patients' decision-making experiences.
As a result, a macro-context was identified as cultural discrimination and historical abuse that overlays the entire medical consulta-  Table 2.
In the analysis, we also used intermediate outcomes (  and anxiety also functioned as mechanisms, while world view could be both context and mechanism. The description of these contexts, the components of mechanisms, and their influence on outcomes are outlined in the following section.

| Macro-context and SDM
In our review, seven documents highlighted cultural discrimination and historical abuse as a macro-context, which has the potential to influence indigenous SDM in the health-care system. Assimilation policies and discrimination continue to influence the health-care system. [40][41][42] This discrimination causes discord and alienation 43

| Contexts in relation to mechanisms and outcomes
Demographics (C 1 ) such as gender, age, and location provided a context for the subsequent context of indigenous world view. Colonialism altered gender roles in most indigenous societies. As a result, in some, but certainly not all, indigenous communities' men became the decision makers within each household and women were stripped of this right. 45,46 Older individuals are expected to care for the younger generations 47 and are seen as knowledge keepers in the community. 48 Younger people could be less likely to adhere to an indigenous world view than older people. 49,50 Those who live on-reserve are more likely to have a stronger tie to indigenous beliefs 51,52 than are those who live within urban centres who are more likely to align with Western world views. 51 Location was also an indicator of access to health care because of cost and distance. 50,53,54 Indigenous world view is both a context (C 2 ) and a mechanism (M 2 ) in our revised programme theory. Indigenous world view as context is the degree to which patients adhere to indigenous world view, and patients' perception of how much their indigenous world view is accepted by the practitioner acts as a mechanism. While indigenous individuals differ in the degree to which they adopt a traditional world view, 37,51 indigenous world view is complex and composed of perception of time, health beliefs and spirituality, holistic learning style, and importance of community. We discuss these components of indigenous world view and how they relate to particular mechanisms within the programme theory in the following paragraphs.
People with indigenous world view may perceive time as relational and non-linear, 45,55-57 which could in part contribute to patients not meeting appointments or following pharmaceutical schedules.
Health-care providers may misinterpret this as a lack of patient compliance. 55

| Descriptions of mechanisms
In our revised programme theory (Figure 3), the mechanism of reciprocal respect (M 1 ) has four components: HCP cultural awareness, HCP communication, power balance, and HCP relationship and advocacy.
Cultural awareness is characterized by an HCP's consideration of indigenous world view. This includes recognizing that family structures, the connection to land and community, traditional healing, and spirituality are often important facets of indigenous life. 36,42,43,61,70 Effective communication is enabled when the beliefs, values, and language of the indigenous person are incorporated into the interaction. 63 Health-care providers without effective communication skills may erode the patient's perception of cultural respect and pride. 58,71 Health-care providers must work to reduce power imbalances in order to build reciprocal respect reduce patient anxiety and increase trust. 4 When an individual perceives there is a more balanced relationship with the HCP, trust increases and anxiety decreases, 41 making SDM engagement more likely. 5,43 Advocacy involves including the indigenous patient in the decisionmaking process in a substantive way. 49 Health-care providers can foster inclusivity by inviting the patient to take an active role in the process 20,40,43,56,[72][73][74] and display a genuine interest in their patient by making a greater effort to communicate with them. 38,40,74,75 Continuity of care from the same HCP is also important, allowing trust to establish and continue. 63,72 When the patient has this type of relationship with the HCP, trust is higher and anxiety is lower.
The second collection of mechanisms in our revised programme theory is the patient's perception of world view acceptance (M 2 ). This entails two components: acceptance of ceremony and spirituality and acceptance of family and community. Demonstrating respect for indigenous ways of knowing, communication, and spirituality are important to fostering a perception of world view acceptance, 39,41,67,76 which can be achieved by incorporating traditional medicine into care. 13,53,77,78 Acceptance of family and community when the HCP demonstrates a willingness to make the proper arrangements and resources (including time) for the involvement of family and community. The result is patients feel their world view is more accepted. 64,65,74,79 In this situation, the outcome of SDM engagement would be expected.
When health information is translated using culturally appropriate knowledge (M 3 ), an indigenous patient will be more likely to engage in SDM and have greater trust in the practitioner and less anxiety.
An essential form of culturally appropriate knowledge translation is storytelling. Storytelling passes information through personalized communication and has been used for generations. 37,48,71 It is a means of transmitting information, including health information that incorporates cultural and spiritual values. Indigenous world view promotes learning through observation. 55 Health-care providers must be aware of this specific form of learning and recognize that silence does not equate to disengagement. When this aspect of world view is accepted, there is increased comprehension among patients and thereby increased trust. As a mechanism, greater trust may result in more SDM engagement, while the mechanism of greater anxiety may lead to less engagement in SDM.  75,79 in the patient's first language. 88 Moreover, institutions should strive to uphold a patient's right to incorporate their own health beliefs and treatment options into their decision-making process. Using our revised programme theory, policymakers can identify areas where system-level improvements can be made and can implement change. The incorporation of indigenous HCPs or peer navigators into Western health systems may guide and support decisionmaking processes.

| Limitations
This research used a limited number of databases, which may introduce a selection bias. The inclusion of iPortal helps negate this bias as it allowed us to use a variety of diverse sources. Also, our analysis may be limited as it was conducted by mostly nonindigenous researchers and without stakeholder input. While our search strategy was developed in collaboration with an indigenous scholar, our analysis may be biased because of our own world views. Because we began this review by using a nonindigenous informed programme theory, this may affect the reproducibility of the results. However, by testing the theory with indigenous patients, the theory can be confirmed, refuted, or refined to reflect engagement in SDM by indigenous patients.
Throughout this realist synthesis, we extracted data that reflected the difficulty in translation between indigenous language and Western comprehension of terms. We recognize that indigenous spirituality is unique and cannot be encapsulated by nonindigenous language or explained in categories. Nevertheless, we believe the revised programme theory would be strengthened through testing with indigenous patients.
We recommend testing this programme theory with indigenous patients to ensure it accurately represents indigenous patients' experiences with SDM. Testing will allow confirmation, refinement, or refutation of the proposed programme theory, with the overall aim of implementing the findings. As there is preliminary evidence that access and treatment play a role in indigenous patients' trust and world views, tailoring the programme theory for trust and world view to specific indigenous patients would strengthen the potential impact of this programme theory. 81

| Conclusion
This realist synthesis examined the contexts, mechanisms, and outcomes relevant to indigenous patients' engagement in SDM. Fostering indigenous world view includes culturally appropriate services to mitigate the negative impact of the macro-context, cultural discrimination, and systemic and historical abuse. Our revised programme theory postulates that when HCPs accept and include indigenous world views into the decision-making process, trust is facilitated, and patient anxiety is reduced. Indigenous patient engagement in SDM may rely on HCP and health-care system ability to integrate multiple world views. This realist synthesis provides clinicians and policymakers a deeper understanding of the complex configurations that influence indigenous patient engagement in SDM and offers possible avenues for improvement. Future tests of the programme theory will offer options for refinement and application in various health settings.