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What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review

Abstract

Background

Indigenous populations have remained strong and resilient in maintaining their unique culture and values, despite centuries of colonial oppression. Unfortunately, a consequential result of facing years of adversity has led Indigenous populations to experience a disproportionate level of poorer health outcomes compared to non-Indigenous populations. Specifically, the rate of Indigenous chronic disease prevalence has significantly increased in the last decade. Many of the unique issues Indigenous populations experience are deeply rooted in their colonial history and the intergenerational traumas that has subsequently impacted their physical, mental, emotional and spiritual well-being. With this, to better improve Indigenous health outcomes, understanding the local context of their challenges is key. Studies have begun to use modes of community engagement to initiate Indigenous partnerships and design chronic disease-based interventions. However, with the lack of a methodological guideline regarding the appropriate level of community engagement to be used, there is concern that many interventions will continue to fall short in meeting community needs.

Objective

The objective of this study was to investigate the how various community engagement strategies have been used to design and/or implement interventions for Indigenous populations with chronic disease.

Methods

A scoping review guided by the methods outlined by Arksey and O’Malley was conducted. A comprehensive search was completed by two reviewers in five electronic databases using keywords related to community engagement, Indigenous health and chronic disease. Studies were reviewed using a descriptive-analytical narrative method and data was categorized into thematic groups reflective of the main findings.

Results

We identified 23 articles that met the criteria for this scoping review. The majority of the studies included the use a participatory research model and the procurement of study approval. However, despite the claimed use of participatory research methods, only 6 studies had involved community members to identify the area of priority and only five had utilized Indigenous interview styles to promote meaningful feedback. Adapting for the local cultural context and the inclusion of community outreach were identified as the key themes from this review.

Conclusion

Many studies have begun to adopt community engagement strategies to better meet the needs of Indigenous Peoples. With the lack of a clear guideline to approach Indigenous-based participatory research, we recommend that researchers focus on 1) building partnerships, 2) obtaining study approval and 3) adapting interventions to the local context.

Introduction

Despite facing centuries of colonization and cultural genocide, Indigenous populations have remained resilient in maintaining their cultural identity through their connection with their values and the land [1]. Nevertheless, even with the strengths of the Indigenous Peoples, according to the International Indicators for Health, Indigenous health status has been reported to be among the lowest in the world [1]. Specifically, while the rate of communicable disease has declined in most Indigenous populations, the rise in chronic disease prevalence has significantly increased [1, 2]. This disproportionate level of poorer health outcomes experienced by Indigenous People compared to non-Indigenous People, can be attributed due to a series of complex factors including the disparities in the social determinants of health (SDH) (e.g. housing, income, food security, racism, discrimination, access to care services, climate change) and the deeply rooted impacts of colonialism (i.e. historical trauma) [2, 3].

With the increasing recognition for various SDH influencing health outcomes, strategies to support Indigenous health have begun to shift in reflection of these highlighted needs [4]. Traditionally, Indigenous-focused research has utilized Western-based methods to investigate modes to improve Indigenous health status. These studies have often had remarkably little success in achieving their desired outcomes, mainly due to the investigators a priori assumption of the issue to be addressed and the intervention to resolve it [4,5,6]. It is also important to note that in many cases, health system data regarding Indigenous health may not even be representative of the community-specific conditions, as it has become common for data only reflecting the state of a subset of an Indigenous population to become widely disseminated as a general statistic [7]. Each Indigenous population faces unique challenges that may not be applicable to others, but this contextual significance is often lost within large national datasets, leaving chronic issues of priority to be overlooked [7, 8]. With this, various Indigenous governing bodies have called on researchers to recognize the importance of context and to increase partnership efforts to better assist community-specific care priorities [1, 7]. Thus, with this growing recognition for the SDH and the call to action for collaboration, this shift in Indigenous-based research has involved the integration of numerous community engagement strategies within general research practice.

One term that has become more commonly used to define the suite of community engagement approaches used in Indigenous populations, is participatory research (PR) [4,5,6]. PR is a type of study design that places community members at the center of the research process in order to empower Indigenous voices, strengthen community capacity and promote meaningful change [5, 6]. Unlike other research designs that work from the top down, PR utilizes a grassroots collaborative approach to build genuine, equitable partnerships between researchers and communities [5, 6]. Within PR, there are an array of different research approaches, all of which differ in their methods, goals and degree of participation. This includes but is not limited to the following study designs; participatory action research (PAR), community-based participatory research (CPBR), and community research (CR) [9, 10]. PAR is characterized by a cycle of reflective inquiry undertaken by communities and researchers to create action for positive social change [11, 12]. True PAR allows the community to lead all stages of the research from identifying the issue of concern to the resultant mode of action, in addition to following the First Nations principles of OCAP (Ownership, Control, Access, Possession) and Inuit Qaujimajatuqangit (IQ) [12]. Similarly, CBPR is guided by principles that call for equitable relations and co-learning among researchers and communities to integrate both Western and traditional Indigenous knowledges. Active community engagement in all stages of the research process is encouraged, but the key goal is to develop interventions that are beneficial, sustainable, and locally relevant [12]. CR follows the same principles as PAR and CPBR, however there are less defined guidelines on its research procedures. Ultimately, the foundational premise of all PR approaches involves the need to work with communities to understand the underlying factors responsible for their health outcomes [5, 6].

Despite the ideologies behind these various PR approaches, studies indicating the use of PAR or CPBR have included varying features within their methods that do not explicitly align with one another’s study design classifications [12]. The lack of an agreed definition regarding these terms, has created a sense of ambiguity with respect to the appropriate level of engagement to be used. Many studies have specified that they have engaged with communities or conducted PR, but there is a lack of clarity regarding what the term ‘engagement’ entails for each researcher, with respect to their study methods and principles. Instead, terms of community engagement or PR are often used in a tokenistic manner, without properly evaluating the methodological validity of its claimed use. For example, a study evaluating the impact of a health education program for diabetes, stated their research had followed PR guidelines, yet within their methods, the study did not even consult the Indigenous students the program was designed for [13]. Within the literature, many studies on Indigenous-based research have focused on understanding the appropriate modes to engage with Indigenous communities, but have failed to provide a clear guide on how these approaches should be integrated within the research process to develop meaningful interventions [10, 12]. With the lack of a proper definition or methodological guideline regarding PR, there is a need to evaluate the varying modes of PR or community engagement used to better guide future studies on Indigenous health. To address this gap, the aim of this review is to explore the level of community engagement (i.e. inclusion of community consult across different stages of research process) used for the design and/or implementation of chronic disease-based interventions for Indigenous populations.

Methods

Study design

A systematic scoping review guided by the methodological framework developed by Arksey and O’Malley was conducted [14]. The steps of this framework utilize an iterative review process over the course of five phases: 1) identify research question, 2) identify relevant studies, 3) study selection, 4) charting the data and 5) summarizing and reporting the results [14]. This review approach is particularly relevant as it helps to map key findings from the literature to better understand the varying levels of engagement used when developing interventions for Indigenous communities [14, 15].

Research question

The focus of this review was to explore the use of community engagement to design and/or implement interventions for Indigenous populations with chronic disease. While the chronic disease-related health disparities among Indigenous People are undeniable, it is unknown whether, and to what extent, interventions have been designed with the unique community perspective. Thus, this led to the following guiding research question:

What is known in the literature on the level of community engagement or participatory research used for the design and/or implementation of chronic disease-related interventions for Indigenous populations?

Search strategy

A preliminary scan of literature was conducted in two academic databases (Medline and the Bibliography of Native North Americans) with the following search terms: community engagement, Indigenous and chronic disease. With support from a faculty-affiliated librarian, keywords and related subject headings were refined according to text contained in the title and abstract of the initial literature search (Table 1). Based on the keywords identified, one reviewer conducted a comprehensive search in five electronic databases: Medline, Bibliography of Native North Americans, Embase CINAHL and Scopus. Reference lists of relevant articles were also reviewed to extract additional studies that were not found in the initial search. This review did not restrict studies according to the year of publication or the country of origin. However, studies were excluded if they were not published in English or if they were grey literature, review papers or study protocols.

Table 1 Scoping Review Search Strategy

Study selection

Articles were reviewed by two reviewers (SW & SS) over two rounds for study selection. In the first round, titles and abstracts were reviewed according to the eligibility criteria listed below. In the second round, the full text of the included articles were screened to determine if they met the outlined criteria (Table 1).

Eligibility criteria

  1. 1)

    Primary intervention involves source of community engagement for design and/or implementation of an intervention

    This study utilized the term intervention in reflection of the medical/healing context, whereby an intervention refers to a treatment (Western or Indigenous medicine), program, tool, source of support or other action taken to treat or improve health outcomes.

  1. 2)

    Distinction of serving an Indigenous population within the study

    We have utilized the World Health Organization (WHO) definition of Indigenous populations to guide this review. The WHO describes Indigenous populations as communities that reside within, or are attached to, geographically distinct traditional or ancestral territories. These communities belong to a distinct cultural group, descended from the communities present in the area before colonization was introduced and modern geographical borders were defined. Indigenous communities generally maintain cultural and social identities, as social, economic, cultural and political institutions, separate from the mainstream or dominant society or culture. For this review, we did not limit our study selection to specific Indigenous populations or modern states such as Canada or Australia, but instead considered the eligibility criteria met if any of the various Indigenous-relating terms were used define a study population (Table 1).

  2. 3)

    Study population has at least one chronic disease related condition (i.e. heart failure, diabetes, etc.)

    This study uses the Center for Disease Control and Prevention (CDC) definition of chronic disease to guide the study selection process. The CDC describes chronic disease broadly as a condition that lasts 1 year or longer that cannot be prevented by vaccines or cured by medication. Chronic diseases require ongoing medical attention and tend to limit daily living activities. The most common chronic diseases include heart disease, stroke, cancer, chronic respiratory diseases and diabetes. For this review, we have not limited the studies to the most common chronic diseases, as communities often have varying prevalence in specific chronic diseases depending on their geographical location and contributing SDH.

Studies that focused on describing modes to conduct Indigenous research but did not include the implementation of any of its aforementioned suggestions, within a current or proposed study, were excluded. The rationale for this exclusion criteria mainly was due to the vast amount of literature available regarding Indigenous research methodologies and ways of mutual learning. It has been found that a large majority of Indigenous research continues to explore approaches to build partnerships between academics and communities, due to the history of ineffective and temporary pilot projects that have been conducted [1]. Despite the significance of this research, the focus of this review was to evaluate how these recommendations for Indigenous community engagement have been utilized within present studies, and if they have met the minimal standards outlined by previous Indigenous-based PR.

Charting and extracting data

Studies meeting the inclusion criteria were critically reviewed (SW & SS) using Arksey and O’Malley’s descriptive- analytical narrative method [14]. A data extraction form was developed by the one reviewer to obtain relevant study information This included the year of publication, study location, chronic disease, study design, intervention type (i.e. mobile health tool, workshop, program, etc.), methodology and level of community engagement.

Summarizing and reporting results

A numerical analysis of the extent and nature of the studies was conducted using tables and chart mappings. To evaluate the extent community engagement strategies were incorporated, this review assessed the presence of community engagement across the various components of the research process. With the varying types of study designs and interventions being developed, we expect that the level of engagement will differ to meet the varying expectation of the studies aims. However, with this, if previous work had been completed in reflection of any partnership or community engagement efforts, this was also taken into account when evaluating the studies level of engagement.

The descriptive data was analyzed using conventional content analysis to conduct a narrative synthesis [14]. In accordance with general PR principles for community engagement, two reviewers (SW and SS) examined the descriptive data and identified key codes relating to the research question [14, 16]. These codes were then organized into thematic groups to summarize the studies according to their main findings.

Results

A total of 3393 articles were identified from the five databases and reference lists searched. Thirty duplicate articles were removed, and the remaining 3363 articles were screened according to the eligibility criteria listed above. After a review of the title and abstracts, only 314 articles were included for the full-text review. Following the second round of review, 293 articles were excluded due to a series of implications with the eligibility criteria, as highlighted in Fig. 1. In total, 23 articles were included in this systematic scoping review (Fig. 1).

Fig. 1
figure1

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram - Systematic Scoping Review Search Strategy and Study Selection

Study characteristics

From the 23 studies, the majority (n = 21) were all published after 2010 (Fig. 2). This finding was expected, as it was only in 2007 that the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) was adopted by the General Assembly [17]. The UNDRIP initiative essentially sparked the need for various countries to not only recognize Indigenous health disparities, but to also respond with an appropriate mode of action. Australia, Canada, United States (US) and New Zealand were originally the four countries against UNDRIP; however, they have since reversed their positions and expressed support for the Declaration either through a formal or informal endorsement [17]. Originally, they justified their lack of support for UNDRIP as they claimed that Indigenous rights were already being recognized within their own national governance systems. In 2010, Australia, New Zealand and the US announced their decision to support UNDRIP in order to continue to uphold their commitment to supporting Indigenous rights. Conversely, while Canada supported the “spirit” of the Declaration in 2010, it was not until the change to a Liberal government, under Prime Minister Justin Trudeau in late 2015, that Canada officially adopted and promised to support UNDRIP. As a result of these events, this scoping review coincidently also found that the most common study locations were Australia (n = 12), followed by Canada (n = 6), United States (US) (n = 3) New Zealand (n = 1) and one multi-country study composed of Australia, Canada and the US (n = 1) (Table 2).

Fig. 2
figure2

Frequency of Scoping Review Articles According

Table 2 Charting of Scoping Review Studies

With respect to the chronic disease of focus, the majority of the studies specifically targeted cardiovascular disease (CVD) (n = 9), diabetes (n = 4) or combined various chronic diseases within its intervention (i.e. CVD, diabetes, obesity) (n = 4) (Table 3). The intervention’s used within the various studies were mainly for 1) Education only (chronic disease information, medication literacy and healthy lifestyle) (n = 17), 2) Education + home care (clinical visit or rehabilitation) (n = 4), 3) Home care only (clinical visit/rehabilitation) (n = 1) or 4) Disease management (n = 2). Nevertheless, despite the intended use of the interventions, there were varying features included to enhance its impact on Indigenous health outcomes. The most common feature or component included was the use of a mobile phone or tablet (n = 7). Indigenous populations residing in more geographically remote areas are at an even further disadvantage and a higher burden of chronic disease, thus the use of a mobile phone allowed them to obtain their needed support more readily [2]. Other intervention features included the use of visual aids (n = 4), community referrals (n = 3) and exercise sessions (n = 3) (Table 4).

Table 3 Summary of Scoping Review Chronic Diseases of Interest
Table 4 Breakdown of Intervention Features in Scoping Review Articles

Level of community engagement in research process

With the varying types of study designs and interventions being developed, we found that the level of engagement used across the 10 components of the research process differed to meet the varying expectation of the studies aims (Table 5). As a result, despite the majority of studies indicating the use of a specific PR model or framework (n = 18), only 6 studies involved community members to confirm the area of priority, whereas only 1 actually had the community identify the area of priority themselves (Table 5). Conversely, the most common level of engagement shared by the studies were at the research approval (n = 11) and intervention modification (n = 11) phases. Research approval generally involved sources of Elder, community committees or tribal council support. To further understand the level of engagement used for intervention modification, this review subdivided this section in accordance with the extent various different community members were involved. Specifically, the level of engagement differed by interviewing or obtaining feedback from 1) community members + stakeholder (i.e. Elder, healthcare provider) (n = 11), 2) healthcare providers only (n = 5) and 3) community members only (n = 3). However, from these studies it is important to recognize that only four actually engaged with community members and/or stakeholders both before and after the intervention’s design, to confirm if feedback was appropriately interpreted and accommodated for.

Table 5 Level of Community Engagement Used in Each Phase of Research Process

Findings from narrative synthesis

Two dominant themes related to the different levels of community engagement used within the included studies were identified: 1) Adapting for the local cultural context and 2) Inclusion of community outreach. The first theme characterizes the various modes in which studies have either used recommended Indigenous methods or have incorporated community feedback within the interventions design. The second theme mainly entails the efforts researchers have made to involve and inform community stakeholders both within the research process and after the study has ended (Table 6).

Table 6 Summary of Community Engagement Themes and Corresponding Study Features

Adapting for the local cultural context

Amongst all studies within this review, the importance of adapting for the local cultural context was identified as key component for the uptake and sustained use of an intervention [18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40]. With this, most articles indicated the use of a PR model to ensure the study respected the Indigenous cultural setting (i.e. PAR, CBPR, Indigenous framework) (n = 18). However, only 10 studies had actually incorporated the fundamental engagement steps needed within their study approach. This included valuable features such as the inclusion of community members during data analysis (n = 5) and the use of Indigenous interview styles to promote meaningful feedback (i.e. yarning or talking circles) (n = 4) (Table 6).

In Farmer et al. [26], they conducted a PR study to develop a culturally relevant diabetes prevention documentary, and within their study design they had developed a community advisory board that guided the researchers on all phases of the study. From this approach, they specifically highlighted that allowing community members to interpret and analyze the data was most helpful, as there were significant items the researchers would have missed without their support [26]. Similarly, Ciccone et al. [21] had included yarning style interviews during their pilot study for Aboriginal people with acquired communication disorders post-stroke and found that this method helped improve the dialogue between the provider and Aboriginal patient.

Inclusion of community outreach

The majority of the studies’ main source of community outreach involved obtaining study approval from an Elder or local Indigenous ethics council (n = 9). Community empowerment was identified as a key feature to support the uptake and longevity of an intervention, but few studies actually included these modes of community outreach. Similarly, it was also found that Indigenous led studies were more widely accepted and had greater potential for sustained growth. However, as previously highlighted, only two studies were led by community members and only a single study actually had the community identify the issue of priority.

Few studies had actually incorporated community outreach items such as developing local capacity for the intervention (n = 6) or creating reports to update community members on study progress (n = 3) (Table 6). Boyer et al. [18] is an example of a study that actually collaborated with the community to hire a local bilingual (English and Yup’ik) research assistant to help conduct the study. With the support of the research assistant, this study was able to use community leadership to develop local capacity to sustain the program beyond study completion. Boyer et al. [18] had also created a formative process where two external evaluators would monitor the program and prepare reports on its progress to distribute to the village.

Discussion

Principal findings

Several studies have highlighted the historical mistrust between Indigenous communities and researchers, that has made the inclusion of PR or community engagement a bare necessity to improve Indigenous health outcomes [41, 42]. However, few have explored or elaborated on the specific process in which modes of community engagement should be initiated to ensure Indigenous cultural values are appropriately respected. In this study, we conducted a scoping review to assess the level of community engagement used when designing or implementing chronic disease-based interventions for Indigenous populations. Across the 23 articles meeting the eligibility criteria, this review found that the majority of studies agreed on the beneficial necessity to engage with community members to ensure the uptake and sustained use of an intervention. These engagement approaches were noted to be able to help allow community members to re-build their connection and sense of belonging with society that had otherwise been neglected within other aspects of the healthcare system.

Despite the agreed benefits community engagement would provide, we found that the studies included in this review utilized varying levels of community engagement or PR methods, which had ultimately limited the overall impact of their work. Studies ranged from involving community members at multiple steps of the research process (i.e. study design, data analysis) to only consulting with the community to gain study approval (Table 5). The lack of a cohesive standard regarding the minimum community engagement efforts to be used to appropriately conduct Indigenous-based research, had ultimately led researchers to conduct studies based on their own interpretation on what level of community engagement was deemed sufficient. Previous studies have developed implementation frameworks to guide researchers in developing and implementing health interventions with Indigenous communities [41,42,43]. Specifically, the He Pikinga Waiora (HPW) is an example of an implementation framework that has been used in a few of the PR-based studies within this review, to guide their research methodology [42]. HPW is intended to be utilized as a planning tool, whereby Indigenous self-determination is used as the core value of the framework and the four essential elements are used to guide intervention development and/or implementation: 1) culture-centeredness, 2) community engagement, 3) systems thinking and 4) integrated knowledge translation [42]. This framework emphasizes fundamental components in conducting Indigenous-based research including the need to incorporate the community voice, reflexivity amongst researchers, community involvement and shared decision-making to encourage holistic perspectives of health [42]. However, the gap in this framework involves the re-occurring issue in which many frameworks highlight the key principles to be considered when designing or implementing an intervention in Indigenous communities, but they do not specify the specific steps or core requirements to appropriately meet the criteria outlined in the framework. With this, researchers are once again left in the position to make their own judgement on the level of engagement adequate to meet the framework’s guidelines.

With the lack of a clear guideline on conducting PR and the essential criteria to be met for proper community engagement, this review has summarized the supported engagement methods related to the two themes highlighted above, to outline a series of recommendations to guide future Indigenous-based research in this field.

Recommendations: What’s appropriate vs. What’s feasible

Initiation of partnership

With over 80% of studies indicating the use of a PR model or framework, it is anticipated that many researchers may have initially used these approach terms due to its popularity across the literature, without accurately understanding the differences in its engagement levels (i.e. PAR vs CR). To better evaluate the most suitable research approach, we recommend that researchers focus on first initiating a partnership with the community. Ultimately, by initiating a partnership, this would open a dialogue between the community and the researchers, to better evaluate the community’s research goals (Table 7). The process of establishing a partnership also allows for opportunities of mutual learning, whereby various Indigenous knowledges and lived-experiences can be highlighted to facilitate the conduct of a study as well as the design of an intervention. In many cases, the strength behind Indigenous knowledges can be overlooked by Western modes of research, thus the use of these approaches helps to ensure multiple lenses of knowledge are incorporated across the research process [39]. This pivotal step also follows the Tri-Council Policy for Ethical Research Involving Humans (Statement 2, Chapter 9), OCAP and IQ. With the history of Indigenous-settler interactions and power-imbalances, partnership building is an essential component of Indigenous research [39, 40]. By effectively establishing a partnership, not only will this help empower communities to become the champions of their care, but it also prevents researchers from partaking in low priority projects or running into community-based limitations during their study. From this review, we found that only seven articles had initiated a research partnership prior to the start of the study, and coincidently these studies were among the articles that included the most diverse methods of community engagement.

Table 7 Summary of Community Engagement Recommendations from Scoping Review Main Findings and Themes

Within the scope of partnership building, it is important to highlight that researchers should also allow the community to dictate the appropriate level of engagement to be used with respect to the study methods. This feedback may dictate or change the intended study design in regard to whether the community deems the use of PAR, CPBR or CR would be most appropriate. To facilitate discussions regarding the study methods, we recommend that the researchers provide details to the community regarding the various modes of community engagement that can be included (i.e. designing study materials, data analysis, yarning interviews). However, the community should ultimately be given the authority to either approve methods, disapprove or suggest alternatives (Table 7). Indigenous populations around the world face different inequities and have various cultures that may play a role in determining the level and type of engagement methods utilized [41]. Therefore, by giving the community options for the study approach, but still allowing the community to make the determining decision, this allows for the study to move forward in a more integrative and community-driven manner. This approach would also allow the researcher to account for any limitations within the community due to resources available or community principles (i.e. research assistant available, translator, yarning), instead of assuming the inapplicability of a certain method. Once these engagement strategies have been confirmed, this will allow the researcher to determine which PR approach is most suitable. We recognize that the partnership building process often requires a large time commitment. However, it will help to re-establish the trusting relationship that has been lost through years of non-relational research practices, which will ultimately improve the likelihood to bring about meaningful change.

Study approval

Throughout the partnership building process, various discussions regarding the study may be informal and not effectively accounted for within the final research protocol. Often times, with the number of steps completed during partnership building, it is assumed that the community has approved the study. Thus, to ensure the discussed methods are reflected in the protocol, it is pivotal to obtain final approval from the community prior to the start of the study and the submission to a research ethics board [36]. We also suggest that as part of the PR and study approval process, multiple community stakeholder meetings are taken on a timely basis (i.e. bi-weekly, monthly, quarterly) to ensure that entire research team is collectively satisfied with the study direction.

Adaptation of intervention

Various studies have included approaches in which they obtained feedback from the community (n = 19) as a source of initial engagement. However, to ensure community feedback has been appropriately interpreted and accommodated for, we recommend that researchers obtain community feedback both during an initial interview, as well as after the intervention changes have been made. From this review, we specifically found that interventions that added features following community feedback were more widely accepted by its target population, as it gave individuals a sense of connection with the tool (i.e. culturally appropriate messages, language, indigenous art/graphics). For example, in Peake et al. [29] they used a PAR approach to design a stroke education booklet, where community members were involved to both design and confirm the content in the booklet. Feedback from this study emphasized incorporating Indigenous stories within education material, where one participant specifically said, “don’t go sanitizing the stories, we need to tell it how it is”. This participant went on to compare stroke to a blockage in the river, and it was the inclusion of these types of references that connected with the members of the community to promote the uptake of the education booklet [29].

From this review, we also found that a number of key intervention features surrounded the use of a mobile phone (i.e. visual aids, motivational messaging). With the rising use of mobile phones across the world, these interventions can serve as a low-cost platform to support populations with limited access to care [40]. Despite some studies highlighting issues related to poor Internet connectivity that may jeopardize the beneficial impact of mobile phones, the use of offline services (i.e. Internet not required for use) and the general expansion of local broadband coverage in many Indigenous communities has helped to address these technical concerns [31, 36, 40]. With this, we recommend that researchers evaluate the potential applicability of transferring their intervention to be mobile-based or adding a supplemental mobile tool. These tools can be customized and adapted to meet the varying Indigenous community contexts, as well as updated or refined if these needs change. With a mobile tool, individuals have the ability to not only manage their condition but also inform their care provider or healer on any changes in their health. Within our review, Tobe et al. [36] was the only study that had an intervention to support disease management, and this was facilitated through the use of a mobile phone. The use of a mobile phone may not be applicable to all communities or research studies; however, we recommend that researchers consider the benefits of its potential integration.

Limitations

This scoping review was limited in the number of studies available, due to required criteria of focusing on the design or implementation of an intervention. Many studies were excluded as their focus was to understand the appropriate mode to approach research, or to identify the underlying factors contributing to Indigenous health outcomes such as the SDH or the impact of colonization, both which were not the focus of this review. We also recognize that our search strategy included key terms relating to PR or community engagement. However, studies that did not use these terms or report on their PR efforts may not have been captured due to this limitation.

Conclusion

The health disparities amongst Indigenous populations remains to be one of the greatest injustices present in society. With the rise in chronic disease prevalence, various interventions have been designed using PR methodologies to better support Indigenous health. Nevertheless, despite the claimed use of PR or community engagement strategies, few studies have adequately used these engagement methods within the design and implementation of their interventions. With the lack of a proper guideline regarding modes to execute PR, we recommend that researchers focus on 1) building partnerships with communities, 2) obtaining study approval and 3) adapting their intervention to fit community needs. Ultimately, there are multiple methods that can be incorporated within a study to improve its effectiveness, but it is important to recognize that as researchers we are facilitating a conversation and it is what the community deems appropriate that is most important.

Availability of data and materials

All article data extracted for this review can be found in Table 2.

Abbreviations

CVD:

Cardiovascular disease

CBPR:

Community-based participatory research

CR:

Community research

IQ:

Inuit Qaujimajatuqangit

OCAP:

Ownership, Control, Access, Possession

PAR:

Participatory action research

PR:

Participatory research

SDH:

Social determinants of health

UNDRIP:

United Nations Declaration on the Rights of Indigenous Peoples

US:

United States

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Acknowledgements

The authors would like to thank Dr. Emily Seto for providing valuable insight for the strategy and direction of the review. The authors would also like to recognize the guidance provided by the Waakebiness-Bryce Institute for Indigenous Health that led to identifying the gap for this review.

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S.W, S. S, A.M.P, H. R and J. C contributed to the design of the review. S. W and S. S reviewed, screened and analyzed the extracted articles. S.W. drafted the manuscript for all the authors to comment and revise. All authors approved the final version of the paper.

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Correspondence to Sahr Wali.

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Wali, S., Superina, S., Mashford-Pringle, A. et al. What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review. Int J Equity Health 20, 8 (2021). https://doi.org/10.1186/s12939-020-01346-6

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Keywords

  • Indigenous
  • Community engagement
  • Chronic disease
  • Participatory research
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