Text box 1. Contributions to the literature

• Adaptations found as a part of this scoping review show a wide range of processes used and reveal gaps in what current approaches suggest to be effective.

• Although many of the studies we reviewed claimed to culturally adapt health-related information, they were excluded since they only performed linguistic level translations.

• Theoretical frameworks or evidence-based best practices need to be developed to guide cultural adaptation of health-related information for all levels of consumers (e.g., parents, adolescents, etc.).

Background

Knowledge mobilization (KMb) (an umbrella term encapsulating knowledge translation, knowledge transfer, and knowledge exchange) [1] involves synthesis, dissemination, transfer and exchange to ensure evidence is accessible, understandable and useful to knowledge users [2, 3]. KMb encompasses a variety of activities, including dissemination of research evidence to increase knowledge users’ access to research, as well as efforts to build and maintain relationships with knowledge users to support the uptake of information [4, 5]. Knowledge creation, in the form of KMb products, is one activity that supports the uptake and use of evidence to inform decision making [6].

Within healthcare, KMb products (which present evidence in clear, concise and user-friendly formats) can help patients and families by informing their health-related behaviours and healthcare decisions to improve health outcomes and reduce health system costs [7]. Successful uptake of evidence is contingent on relevance of the KMb products for the target end-user [2]. However, recognized barriers or determinants of effective KMb are differences in culture and language among the end-users of the evidence [8].

While KMb efforts have advanced substantially in the field of health promotion over the last decade, predominant cultures often comprise the accessible pool of engaged end-users [9, 10]. Subsequently, KMb products frequently entail English communication, and mainstream images not conveying relevance to minority cultures. Similarly, most health related KMb products assume end-users possess a certain level of health literacy and are relatively familiar with their healthcare system, which may not represent the experiences of many newcomer cultural groups. Public health agencies (e.g. Health Canada) sometimes provide linguistic translations of healthcare information for common languages; however, exclusive linguistic translation does not guarantee accessibility and relevance of healthcare information for the target communities. Instead, nuanced visuals, relevant terms, and overall cultural sensitivity have proved more desirable for end-users [11].

Resnicow and colleagues [12] have proposed that cultural adaptation consists of two dimensions: surface structure and deep structure. Aspects of culture that are easily observable to external onlookers like language, clothing, and ethnicity would fall under surface structure, while historical and psychological influences on health decisions would fall under deep structure. Though admittedly gray in nature, the delineation of surface and deep aspects provides potential broad categories of cultural adaptation. In terms of the application of cultural sensitivity, efforts to create or adapt KMb products could include surface structures of language and appearance of end-users, as well as deep structures of historical barriers and psychological stressors for end-users [13]. Resnicow and colleagues suggest that both surface and deep structures of cultural knowledge are essential for well-rounded cultural adaptations and encourage the involvement of end-users to understand the nuanced aspects.

Types and extent of stakeholder engagement can also vary in KMb product creation and adaptation [9, 14, 15]. Bammer [16] proposed a modified version of the International Association for Public Participation (IAP2) stakeholder engagement model, where researchers are positioned as support for the directions chosen by stakeholders and end-users (e.g. those who use the resources), rather than decision-makers and researchers themselves. The positioning of end-users as experts in their own information needs and preferences mirrors other public participation approaches often employed by heath researchers (e.g. Participatory Action Research (PAR) [17], Community-Based Participatory Research (CBPR) [18], etc.). Both cultural adaptation and stakeholder and end-user engagement appear to be core pillars in KMb product creation.

While there are several processes (e.g. translation and cultural brokerage, ecological validity model) of cultural adaptation that have been previously applied to adapt health intervention programs [19], and patient reported outcome scales [20], no guidance currently exists on how best to create or adapt KMb products that reach diverse end-user needs. As an initial step towards understanding best practices for effective KMb product creation or adaptation, within healthcare, this scoping review (ScR) aimed to map what approaches researchers have used to create or adapt culturally relevant health related KMb products. The following questions guided this ScR:

  1. 1.

    What approaches and methods have researchers used when creating or adapting health related KMb products for culturally and linguistically diverse (CALD) end-users?

  2. 2.

    What are the key considerations when creating or adapting KMb products for CALD end-users?

Understanding what methods have previously been used, resources required, as well as key considerations for how best to create or adapt KMb products will support health researchers and healthcare organizations in creating or adapting effective resources for CALD communities.

Methods

Review methods

This ScR followed the methodological framework proposed by Arksey and O’Malley [21], enhanced by Levac et al. [22] Specifically, we followed these five steps: (1) identifying the research question(s); (2) identifying the relevant studies; (3) study selection; (4) charting the data; (5) and reporting the results. Reporting of the review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) – 2018 Extension for Scoping Review. (Additional file 1) [23] A protocol was developed a priori and registered in Open Science Framework on August 16, 2022, and any protocol deviations have been reported there.

Search strategy

In collaboration with a research librarian and content experts, we developed and refined a comprehensive search strategy. The strategy combined subject headings and keywords for terms related to KMb, knowledge exchange, knowledge mobilization, cross-culture, culturally appropriate, CALD communities, and adaptation of health information and implementation science. On August 12, 2021 we searched Ovid Medline (1946-), CINAHL via EBSCOhost (1937-), PsycINFO (2002-), as well as ProQuest Dissertations & Theses Global to identify grey literature. Search results were exported to EndNote V.X7 (Clarivate Analytics) and duplicates removed before the file was provided to reviewers for screening in Microsoft Excel. The search was limited to English language, peer-reviewed studies published in academic journals from 2011 to August 2021 (given KMb was introduced and reported within health research literature around 2011). A search update was run in July 2023.

Study selection

All published study design types and secondary evidence syntheses were included if they contained a patient, public or consumer population and created or adapted a KMb product for CALD end-users. We defined a KMb product as any health research-based product that supported decision-making to provide explicit recommendations, and/or meet knowledge needs. We excluded any studies that only performed purely linguistic translations of a KMb product or the validation of translated measurement tools/questionnaires. Health interventions without standalone KMb products for end-user decision-making were also excluded. One reviewer screened titles and abstracts of each study as “include/unsure” or “exclude” based on a priori inclusion criteria (Additional file 2). A second independent reviewer verified all studies excluded by the first reviewer. Both reviewers performed a pilot screen where they independently screened 10% of the studies to assess consistency. Two independent reviewers reviewed the full-text of each included study from the primary screening. When agreement on a citation or full-text could not be reached between two reviewers, a third senior reviewer was consulted for resolution.

Data extraction

The following details were extracted from each study: publication characteristics, study design, population, KMb product description, methods of creation or adaptation, stakeholder (defined within as “individuals, organizations or communities that have a direct interest in the process and outcomes of a project, research or policy endeavor”) [24] engagement processes, KMb product evaluation processes, and reflections from researchers. Data were collected using a standardized form by one reviewer and verified by a second reviewer. Any discrepancies were resolved through a third-party decision.

Data analysis

We performed a narrative synthesis, guided by a qualitative content analysis approach [25] to summarize the quantity, content, and coverage of the evidence including summary statistics on studies examining the different ways of creating or adapting culturally relevant KMb products. Processes for creation or adaptation were mapped into five categories (Product creation, Literature search, Stakeholder engagement, Resources utilized, Evaluation) representing different methods reported throughout the literature.

Cultural adaptations were categorized into two broad groups, surface and deep structure [12, 26]. Surface structure involved coordinating materials and messages to observable characteristics of the target end-user (i.e., imagery, sounds, backgrounds, clothing, etc.). Deep structure involved contextualizing the social, historical, environmental, and psychological features of the proposed end-user group.

Bammer’s iS2 version [16] of the IAP2 Spectrum of Public Participation was used to classify levels of stakeholder (including end-user) engagement in the research approach/design across each study [27, 28]. The i2S is a spectrum of engagement across five stages: 1) Inform (e.g. informing stakeholders of health information and research processes), 2) Consult (e.g. researchers obtain feedback on research [i.e. recruitment processes, community engagement, tool topic], 3) Involve (e.g. researchers work directly with stakeholders to ensure their concerns or needs are considered in the research), 4) Collaborate (e.g. researchers develop equal partnerships for undertaking the research [i.e. co-designing a research study]), 5) Support (e.g. researchers support stakeholder in designing and implementing desirable research and dissemination methods) [16]. In moving from ‘inform’ to ‘support’ stakeholders have increasing influence on the research. We acknowledge that the term stakeholder may inadvertently feed into a colonialist mentality by perpetuating colonization and re-traumatization. A published model was used to define stakeholder engagement at various levels for this project and thus this term is used throughout the manuscript.

Additionally, end-user engagement in the creation or adaptation of the KMb product was mapped, based on their input into processes related to content, design, evaluation and dissemination.

Results

Search results

The search strategy (Additional file 3) captured 10, 299 studies after removing duplicates. Of these, the full-text of 670 were reviewed and 78 met eligibility criteria and were included in the review. The PRISMA flow diagram (Fig. 1) provides a detailed outline of the screening and selection process.

Fig. 1
figure 1

PRISMA Flow Diagram

Full size image

Study characteristics

Table 1 provides a summary of the included studies’ characteristics with detailed characteristics in Additional file 4. The majority of studies were from USA (50%, n = 39) and Canada (10%, n = 7), with three (4%) studies each from Australia and United Kingdom and two (3%) studies each from Netherlands, Portugal and Tanzania. Most of the studies used qualitative methods (78%, n = 61) followed by mixed methods (14%, n = 11) and quantitative methods (8%, n = 6). Forty-nine (63%) reported the age of participants, most (n = 45, 92%) focused on adult populations and four (8%) on adolescents.

Table 1 Summary of article characteristics
Full size table

End-user groups varied across the included studies, with Latinx Spanish speakers (21%, n = 16) as the most frequently reported cultural communities served. Seventeen (22%) studies undertook cultural adaptations into more than one language. Health topics of the KMb products included: cancer (15%, n = 12), mental health conditions (6%, n = 5), COVID topics (6%, n = 5), diabetes (5%, n = 4), organ donation (5%, n = 4), and dementia (5%, n = 4).

Forty-nine (63%) created digital KMb products, twenty-four (31%) created non-digital products and five (6%) created both a digital and non-digital version of the same KMb product. Digital KMb products (63%, n = 49) included Internet-based tools such as videos/animations/infographics (45%, n = 22), eHealth websites (14%, n = 7), mobile-based tools such as health applications (29%, n = 14), tailored text messaging campaigns (14%, n = 7), and patient decision aids (6%, n = 3). Non-digital formats included booklets/leaflets/pamphlets (79%, n = 19) and patient decision aids (21%, n = 5).

Creation or adaptation processes

Creation or adaptation processes are mapped out in Table 2, and further details for each of the processes are outlined in Additional file 5. Each included study followed a unique process for creating or adapting a KMb product for CALD communities. Fifty-four (69%) reported the processes of creating a new KMb product, while twenty-four studies (31%) outlined their process for adapting a pre-existing KMb product for a specific end-user group. Thirty-eight studies (49%) reported a preparatory information gathering process, where literature reviews (68%, n = 26), systematic/scoping reviews (16%, n = 6), and conversations with community agencies or experts (8%, n = 3), provided background to direct creation of the KMb product.

Table 2 Processes used for creating or adapting of KMb products
Full size table

Stakeholder engagement in research

Twenty eight studies (36%) engaged stakeholders at varying levels in the approach to the research project, or stakeholders gave input on the research methods and study design. Most commonly, stakeholders were engaged at the level of Involve (n = 17, 61%), followed by Consult (n = 14, 50%), Collaborate (n = 10, 36%), and Inform (n = 2, 7%). Three studies (11%) engaged stakeholders at the highest level of engagement, Support. All three studies worked in partnership with American Indian or Indigenous communities, in which community-based research methods were used.

End-user engagement in KMb product creation or adaptation

Seventy-five studies (96%) involved end-users specifically in the creation or adaptation of the KMb product. End-users were involved in providing input on content (n = 64, 85%) and design (n = 52, 69%) features. Input was gathered through a mix of focus group sessions (n = 24), one-on-one interviews (n = 31), surveys (n = 7), workshops (n = 7) and via community advisory groups (n = 36). Over half the studies (n = 44, 59%) reported involving end-users in the evaluation of the KMb product. This included seeking feedback from end-users via surveys (n = 14, 32%), focus groups (n = 5, 11%) as well as formal evaluation studies (n = 9, 20%). Of these, 40 (91%) studies reported the results of their evaluation. Assessments included usability testing, acceptability, cultural appropriateness, esthetics, and knowledge gained through use of the KMb product. However, none of the studies included a structured assessment of end-user engagement and involvement when adapting or creating the KMb product. Twenty studies (27%) reported that end-users were involved in the dissemination of the created or adapted KMb resource. Thirteen studies (65%) reported end-users provided suggestions on where and how to disseminate, and in 11 studies (55%) end-users helped with dissemination of the KMb resource.

Resources utilized

Most studies (n = 74, 95%) reported the various human resources they utilized during their creation or adaptation process. The involvement of healthcare providers was the most prevalent (n = 35, 47%), followed by translation support (n = 27, 36%), research or content experts (n = 25, 34%) and creative or visual designers (n = 22, 30%). Two studies used specialists to moderate their process, one study [32] had a participatory design expert to assist with guiding exercises and another study [57] used an experienced moderator to lead their discussion sessions.

Approach and type of cultural adaptation

Details regarding the type of cultural adaptations used and involvement of end-users is presented in Table 3. Six studies (8%) cited using a CBPR [18] approach, and twenty-five studies (32%) reported using a framework, theory or model to guide their creation or adaptation efforts. All studies utilized surface structure cultural adaptations and most (85%, n = 66) included deep structure adaptations in their creation or adaptation processes. To achieve deep structure contextualization authors most commonly consulted specific end-user populations (e.g. clinical populations [14%, n = 9], community members [30%, n = 20]) through focus groups (11%, n = 7), and assessed various cultural contexts (18%, n = 12).

Table 3 Type of cultural adaptation and end-user involvement in KMb creation or adaptation
Full size table

Researcher reflections

Thirty-two (41%) studies included reflections from the research team on the processes for creating or adapting KMb products (See Additional File 6). Notably, researchers emphasized the importance of forming stakeholder relationships before and involving end-users throughout the research process [32], that communication between multiple stakeholder groups can be time-consuming [58], that initial positive reception to adapted products does not guarantee adherence to behavior change [88], but that the process of adapting KMb products can be rewarding for researchers (e.g. meeting end-users needs) [78].

Discussion

This ScR provides an outline of documented processes used to create or adapt KMb products for CALD communities, highlights gaps in that literature, and provides direction for future research. As a means of addressing the needs of populations often underserved by health systems, researchers and organizations have begun specifically creating or adapting their KMb products for CALD communities. To the best of our knowledge, this is the first review to synthesize and examine literature on processes and considerations for creating or adapting KMb products. There appears to be a range of methods employed to address KMb creation for CALD groups. These methods range from original co-created KMb products with participatory frameworks (e.g. Wild et al., [10]; Telenta et al., [14]) to cultural adaptations of pre-existing KMb products [81].

Through this ScR, we identified 78 studies that reported a variety of methods for creating or adapting KMb products for CALD communities. Across the various cultural communities, modes of information delivery, and approaches/processes cited, many studies demonstrated deep structure cultural adaptation [12]. While the majority involved end-users in the creation or adaptation of the KMb resource, only 28 studies engaged stakeholders in the research approach (as per i2S model) [16].

Along with study characteristics and creation processes, we extracted information about the depth of creation or adaptation based on Resnicow’s [12] explanation of surface and deep structures of cultural sensitivity. It has been reported that gaining deep structure cultural knowledge can be a time-consuming process, largely inaccessible to outsiders to the cultural community [151]. Although it was not possible to extract information about the cultural background of included studies team members, it is likely that researchers may not identify with the end-user population of study. Researchers who are outsiders to the end-user community lack the necessary information for deep structure cultural sensitivity on their own. However, engaging with community members directly can provide insider perspectives for culturally sensitive practices.

Each phase of the i2S framework represents increasing involvement of stakeholders in research processes [16]; with the ultimate stage of Support representing research decisions led by end-users. The few studies that utilized this level of the i2S framework in this review potentially indicate the challenges and commitment required for this process. Studies that exemplified the Support phase of the i2S utilized end-user committees that were involved from early conversations about research priorities to eventual dissemination of findings. However, while it is important to note that stakeholder engagement may vary depending on project aims and resources, ongoing stakeholder engagement at the Involve, Collaborate, or Support level is essential to gain insights for deep structure cultural aspects and relevant KMb [26]. The majority of studies included in this review engaged in some form of deep structure cultural adaptation, likely due in part to some form of end-user engagement and involvement [16] reported in included studies.

This emphasis on inductive knowledge obtainment and delivery mirrors processes outlined in CBPR [152] and PAR [17] approaches. In both CBPR and PAR, the end-user from the community of study is positioned as a collaborator: someone who has autonomy in the research process as well as insider information for the community of study [17, 18, 152]. CBPR has been used as a guiding approach in health intervention literature, and may provide similar guidance for KMb product creation and adaptation [153]. Additionally, frameworks used for adapting health interventions, such as the Ecological Validity Model [20], may also offer a systematic approach to cultural adaptations of KMb products. Regardless of the framework used, researchers who choose to create or adapt KMb products for CALD communities may be well-supported by seeking deep structure cultural understandings through supportive, inductive stakeholder engagement and through involving end-users in the development of KMb resources.

A gap in the literature was around researchers’ reflections of the processes used, as well as the specific methods of KMb product evaluation. Many involved a wide range of people and skill sets, which is also potentially time consuming and costly. While many studies reported they evaluated the created or adapted KMb product for usability, few mentioned the specific tools used to assess uptake and impact. It is unknown whether some of the initial positive receptions to the adapted products reported resulted in increased knowledge or influenced behavior change or decision-making (pending the purpose of the tool). Evaluation tools should assess not only the cultural appropriateness of the developed or adapted KMb product, but also the effectiveness of the products in terms of achieving their intended purpose (e.g. increased health literacy, influenced decision making). Further, no studies reported evaluating the engagement process with their end-users. Additionally, many did not report on the practicality or feasibility of the processes used (time, resources, engagement), nor whether the product met end-users’ needs and expectations. Those that did, reflected that incorporation and balancing of opinions and feedback from different stakeholders (researchers, clinicians, end-users, community members) was difficult and time-consuming. Further, fostering collaborations between researchers and community members was resource intensive, yet many reported that establishing these partnerships was key to ensure materials were comprehensive, accessible, and appropriate for the end-users.

Future research should aim to understand the practicalities and nuances of engaging end-users and evaluating the processes to support others in this field. Furthermore, greater transparency by researchers in their adaptation processes would aid in solidifying best practice considerations for culturally adapting KMb products. Ultimately, the most successful methods used by researchers to create or adapt KMb products for CALD communities could be collated and used to form a framework for future work. Additionally, drawing on culturally targeted or tailored approaches proposed by Kreuter et al., [121] could help identify factors such as familial roles, communication patterns, belief systems, social structures and other behavioral and social characteristics within the end-user community that should be considered during tool development or adaption. A framework that integrates peripheral, evidential, linguistic, and social cultural dimensions, could then be evaluated with end-users from various cultural communities to assess its usefulness in this field [121]. However, given how nuanced and tailored KMb should be in meeting the needs of the end-user, perhaps careful planning considering meaningful engagement and being intentional about the best methods to use is key.

Limitations

This review only included publications in English, yet other cultural creation or adaptation methods studies may be present in languages other than English. The process of defining a KMb product was iterative and largely guided by consensus discussion. The overlap between KMb products and intervention materials was difficult to navigate, particularly when studies did not thoroughly describe their intervention materials.

Consultation

By examining the methods others have used for their creation and adaptation work, a better understanding around the key considerations when creating or adapting KMb products for culturally and linguistically diverse communities can be achieved.

A methods working group stemming from this work has been developed to drive the creation of key considerations for how to linguistically and culturally create or adapt KMb products. The methods working group is made up of researchers, cultural knowledge brokers and community members who have firsthand experience and knowledge around how to engage with diverse communities as well as co-design KMb products. By critically evaluating current adaptation practices, we intend to establish a core set of methods and considerations for creating or adapting healthcare decision-making tools for CALD communities. A driving questions behind those discussions will be: is it possible to create a KMb product that meets the needs of multiple diverse communities, or does that go against the foundational tenets of KMb (contextualization, target end-user)?

Conclusion

This review provides information on the various processes, resources needed and levels of stakeholder engagement and end-user involvement used to create or adapt KMb products for CALD communities. While methods and processes, as well as theory or frameworks underpinning the work, varied across projects, it is clear that an important amount of time and resources is required. Significant gaps in the literature still remain surrounding how best to create or adapt culturally relevant KMb products and how to evaluate their impact, what level of engagement is needed, as well as understanding the practicalities of culturally adapting KMb products. Until an appropriate framework exists that integrates both cultural and linguistic dimensions, researchers would be well-supported by emphasizing cultural sensitivity and meaningful end-user engagement in their approaches.

The findings of this review and examples of cultural adaptation could be used to support the creation of best practice guidelines for researchers working in this field. Understanding and developing considerations for best practices will assist researchers and organizations in effectively reaching a wider population with health promotion and KMb initiatives.