Qualitative Methods Case Study: Using MAXQDA in Indigenous HIV Journey Mapping Research

Abstract

This study presents a case study using MAXQDA, a Computer-Assisted Qualitative Data Analysis Software (CAQDAS), to analyze interview data within the Northern HIV Journey Mapping Project, which explored the experiences of Indigenous people living with HIV in Manitoba, Canada. By adapting patient experience mapping and process mapping methods, the research team traced participant journeys through the HIV Care Cascade, identifying barriers and facilitators to well-being. Within a decolonizing framework informed by Two-Eyed Seeing and Ethical Space, we critically examined the role of CAQDAS in Indigenous health research, highlighting both its utility and its tensions with Indigenous storytelling traditions. Our methodological approach balanced Western analytical tools with Indigenous knowledge systems, ensuring that technology served the research rather than distorting the lived realities of participants. MAXQDA enabled data visualization that made complex, non-linear healthcare journeys more accessible to researchers and policymakers. However, the software’s structuring of qualitative data into discrete codes and categories raised epistemological questions about how Indigenous narratives are “treated” as data within a neoliberal knowledge economy. To mitigate these concerns, we engaged in reflexivity, involved Indigenous Elders and research associates, and emphasized relational accountability in both analysis and dissemination. This case study contributes to the field of qualitative methods by demonstrating how CAQDAS can be employed within decolonizing Indigenous research while acknowledging its limitations. Results suggest that while tools like MAXQDA enhance methodological rigour and knowledge mobilization, researchers must remain critically engaged with their impact on Indigenous ways of knowing. We recommend that future research prioritizes Indigenous-led adaptations of digital analysis tools and emphasize participatory approaches to ensure that qualitative research serves Indigenous communities in culturally responsive ways. Our reflections offer insights for scholars seeking to decolonize qualitative inquiry while maintaining methodological integrity in health research.

Introduction

This case study demonstrates the use of MAXQDA, a Computer-Assisted Qualitative Data Analysis Software (CAQDAS) package, to analyze qualitative interview data within the Northern HIV Journey Mapping Project (NHJMP). The overall study aimed to explore the journeys of Indigenous people living with HIV in Manitoba, Canada, including First Nations and Métis individuals, through the HIV Cascade of Care (McClarty, Blanchard, & Becker, 2021; McClarty, Kasper, et al., 2021), to identify the barriers and facilitators at each milestone that affected their overall well-being. This paper describes the process of using MAXQDA to analyze and visualize data derived from adapted patient experience and process mapping methods used to trace participants’ healthcare journeys. Within the context of an Indigenous decolonizing research framework, we focused on how MAXQDA facilitated the storage, organization, treatment and then visualization of data in pursuit of achieving the research objectives.

As discussed below, the use of software to analyze the stories of Indigenous people living with HIV and their service providers led to challenges and opportunities that generated insights for both the research team and the intended audiences. MAXQDA proved useful in supporting the conceptualization and visualization of non-linear individual participant journeys through the HIV Care Cascade, which is conceptualized as a linear, sequential process. A key aspect of this overall analysis process related to overarching Indigenous, decolonizing methodology emerged however in surfaced tensions between the “treatment” of Indigenous stories as data and the use of technology as a form of “machinery” to derive meaning, raising epistemological questions about the knowledge generated through this process fits within the context of neo-liberal knowledge economies inherent in academic settings.

The full analysis process, from the perspective of the first author (JS) who led data management and analysis in the study, is described below with examples and images that provide context and highlight the value and opportunity in using MAXQDA in journey mapping research. We have included detail, and instructions where relevant, to support other researchers in adopting this method. The paper concludes with recommendations for effectively using these novel methods and a brief summary.

Background

HIV Among Indigenous People in Canada

HIV among Indigenous people in Canada represents a complex and pressing public health issue, particularly in the mid-western prairie provinces of Manitoba and Saskatchewan. Recent data raised alarms by highlighting that both Manitoba and Saskatchewan’s infection rates rank third and fourth place among entire WHO regions globally, surpassing rates in entire continental regions in Africa and Europe (Rueda et al., 2025). Compared to previous years, HIV rates in Manitoba rose by 36% in 2022 (256 cases) followed by 51% in 2023 (388 new cases). Without any change to the province’s response strategy, recent mathematical modeling predicts 1088 new HIV diagnoses in 2028 (Rueda et al., 2023). The majority of cases in Manitoba remain concentrated within First Nations communities, which include both urban Indigenous people and rural/remote reservations and smaller urban centres (Manitoba HIV Program, 2022), highlighting the disproportionate impact of HIV on groups who face additional barriers to achieving health equity in Canada’s contemporary, colonized society. Both the complexity of the social determinants of health related to Indigenous communities (Carson et al., 2020) and recent calls for Indigenous-led HIV research (see for example, Deering et al., 2021) have inspired new projects and initiatives to approach HIV research and programming in ways that centre and prioritize Indigenous worldviews and cultural teachings. Among these are a focus on decolonizing methodologies (Wilson, 2020), which provided the foundation for the NHJMP work.

The Northern HIV Journey Mapping Project

The NHJMP launched in 2019, prior to the onset of the COVID-19 pandemic and was led by a team of researchers that included a local Two-Spirit Elder/Knowledge Keeper, Dr. Albert McLeod as Co-PI, and two Indigenous people living with HIV who were hired as research associates to participate in all aspects of data collection, analysis, and reporting. The initial research objectives included exploring barriers and facilitators along the healthcare journeys of moving through the continuum of milestones that constitute the HIV Care Cascade (McClarty, Kasper, et al., 2021). In pursuit of reaching true, systemic change, participants were also invited to share recommendations in line with ‘Waters of Systems Change’ model (Kania et al., 2018), which along with barriers and facilitators, served as an analytic frame to guide the interpretation of results. Over the course of three years, interviews were conducted with healthcare service providers and Indigenous people living with HIV from throughout Manitoba. For more information about the effect of COVID-19 on the population in question and for a more detailed description of the data collection methods and participant demographics, see Larcombe et al. (2023).

Methodology

Decolonizing Methodology: Two-Eyed Seeing and Ethical Space

This study was grounded in an Indigenous decolonizing methodology, which according to Smith (2019) seeks to reclaim control over Indigenous ways of knowing, being, and doing by actively resisting the colonial legacy of Western research practices while affirming Indigenous knowledge systems, values, and priorities. Our methodology was developed in partnership with Indigenous people with lived and living experience of HIV, a local Two-Spirit Elder, Dr. Albert McLeod, and Indigenous research associates. With the support of this team, and with ethics approval from the Manitoba First Nations Health and Social Secretariat, two key concepts were integrated into the design and delivery of this project. First, Dr. McLeod guided our team to create ‘Ethical Research Space’ (Ermine, 2007), a concept and practice that invites reciprocal and responsible research participation between Indigenous and non-Indigenous researchers and communities. The guidance offered through Ethical Research Space was important to balancing power dynamics between researchers and participants who were made vulnerable due to their HIV-positive status, social location, and various social determinants of health unique to Indigenous people in Manitoba. The Ethical Space approach also provided a foundation for critical and reflexive thinking about the research’s impact, our actions, and the power dynamics shaping the process.

The second decolonizing aspect of the research study involved employing a Two-Eyed Seeing Approach (Marshall & Bartlett, 2015) that emphasizes learning and drawing from both Indigenous and Western ways of knowing (“Indigenous” refers to Inuit, Métis and First Nations communities and Western refers to the driving ideology behind Western Expansionism that grounded colonization throughout the world by European nations, including throughout what is now called North America). When both perspectives are combined, the cultural relevance of storytelling as an Indigenous research practice with cultural significance is woven together with Western scientific methods (interviews, focus groups, journey mapping, for example) to recalibrate the dominance of western ways of knowing in modern science with Indigenous cultural practices of knowledge gathering and sharing that have existed within Indigenous communities for centuries (Wilson, 2020). This approach supports the strengths of both perspectives while minimizing the potential harm of one diminishing the other. Together, these efforts reflect the epistemological assumption within the decolonizing methodology that framed this work, which sought to intentionally reduce and prevent the risk of further colonization and harm for First Nations participants through the process of generating knowledge (Kovach, 2021; Smith, 2019).

Methods

Ethics

The study was approved by the University of Manitoba Health Research Ethics Board and the Manitoba First Nation Health and Social Secretariat’s Health Information Research Governance Committee.

Journey Mapping

The study adapted both the patient experience mapping method (Joseph et al., 2023) to capture the experiences of the health system from the user perspective and the healthcare process mapping method (Trebble et al., 2010) to capture staff feedback on processes within the system. Patient journey mapping has been used to optimize patient care, create more efficient systems in clinical and hospital settings and to identify barriers and facilitators for safe reliable healthcare (Johnson et al., 2012; Kim et al., 2006; Layton et al., 1998; Trebble et al., 2010). Documenting how patients navigate the healthcare system in general, or with a specific disease (e.g. Parkinson’s, rheumatoid arthritis, cancer), has been used to understand and “see” a patients experience by separating the management of the conditions into a series of steps (activities, interventions, staff interactions) along the continuum from admission to eventual discharge (Del Río et al., 2007; Helsing, 2007; Jones et al., 2017; Oliver, 2008). According to Davies et al. (2023), it is important to integrate patient journey mapping and process mapping methods to better describe, understand, and provide a more comprehensive picture of patient experience, service delivery, and healthcare processes.

Journey mapping’s potential in the healthcare context lies in benefitting from input from multiple perspectives and by using a variety of techniques to gather and represent data (Jones et al., 2017). Therefore, the research team chose to emphasize the perspectives of both First Nations people living with HIV and the healthcare providers supporting them within the healthcare system. The intention was to gather and develop two complete data sets which, when combined and compared, could offer insight into the barriers, facilitators and recommendations for systems change from two perspectives of the same healthcare experience.

The HIV Care Cascade

The HIV Care Cascade describes the process through which newly diagnosed individuals engage in HIV treatment and care, ultimately leading to viral suppression and optimal wellbeing (Genberg et al., 2016). The HIV Cascade of Care (see Figure 1) is comprised of a set of six milestones that a person living with HIV will move or “journey” through in order to achieve viral suppression and live well. These milestones include: 1) before the HIV test; 2) the positive HIV test and diagnosis; 3) linked to care; 4) retained in care; 5) prescribed medication; and 6) achieves viral suppression. This process also considers the time before a person living with HIV is infected and is modeled after how the healthcare system is set up to receive a newly diagnosed person.

Figure 1.

NHJMP HIV Cascade of Care

The choice to use the HIV Care Cascade as the unifying trajectory through which to identify common experiences was intentional for several reasons. First, the definition of the HIV Care Cascade chosen for this study was being used by the Government of Canada in 2019 (Canada, 2020), though we chose to expand this to include the health journey before HIV positive test and diagnosis, and to recognize that linkage to care also involves being engaged in and retained in care (See Figure 1).

Given the relatively familiarity of this model throughout the HIV care system, its use and adoption represented the best possible opportunity for results uptake upon completion. Furthermore, local research in Manitoba had worked with the Care Cascade noted here (McClarty, Blanchard, & Becker, 2021; McClarty, Kasper, et al., 2021), ensuring the alignment of study results with relevant, current literature and localized experience.

Data Collection

A total of 11 interviews were conducted first with healthcare providers, followed by 18 with Indigenous people living with HIV. Initially, interviews were conducted via Zoom due to COVID-19, but some were held in person near the end of data collection in 2023. Participants were from throughout Manitoba, some with experience of living in northern, rural and remote areas, while others lived in urban Winnipeg or had urban city experience due to migrating from their reserve or home community at some point in their lives. While the sample size reflects both the challenges in recruiting from a remote, hard-to-reach population and the impacts of COVID-19 on healthcare access, broadly speaking, we were able to achieve data saturation within the analysis.

A semi-structured interview guide was followed, which moved through each milestone systematically to generate a picture of the journey, with questions exploring the barriers, facilitators, and imagery associated with each milestone. Questions related to COVID-19 were added, and participants were invited to share recommendations for improving the HIV Care Cascade experience. Audio recordings were transcribed and verified both by the researcher and research associate involved in the interview, after which data analysis began. Initial analysis involved a review of the data by the research team and a discussion with the Two-Spirit Elder and Research Associates about emerging themes and directions to guide further analysis. Then, in 2023, the first author of this report was invited to conduct qualitative data analysis using MAXQDA to support knowledge dissemination and translation. What follows is a detailed description of both the process and outcomes of using MAXQDA, but also reflections on the methodological influences and tensions that arose throughout the analysis phase.

Computer-Assisted Qualitative Data Analysis

The use of CAQDAS in qualitative health research is common and is often regarded as a marker of quality and rigour in the evaluation of health research methodologies as it can reduce the “messiness” that is inherent in iterative research processes (Sinkovics & Alfoldi, 2012). Qualitative data analysis has been described as “a range of techniques for sorting, organising and indexing qualitative data,” within which data interpretation and coding are conducted (Mason, 1996, p. 7). The use of CAQDAS has allowed for more rapid and rigorous results (Rambaree, 2007), including the production of inter-rater reliability scores for team-based projects, and offers tools to increase efficiency. However, it is important to note that CAQDAS does not analyze the data for the researcher; rather, that remains the responsibility of a trained and skilled researcher who uses the software as a tool to facilitate the analysis process, which is guided by theory (Charmaz, 2000).

The appeal of CAQDAS to quality and rigour is particularly relevant to health research due to the dominance of quantitative methodologies dominate in public health fields as it enables a direct translation to the language of statistics (Mays & Pope, 2020). For example, CAQDAS elucidates an iterative, reflexive process by enabling other researchers to follow the analysis process and, in some cases, replicate the work, thereby increasing external validity. However, the notion that quantitative methods is inherently more rigorous or trustworthy, including the assumption that qualitative research should aspire to accomplish external validation, is contested by critical qualitative researchers, who argue that such discourses of quality and rigour are—in some cases—irrelevant due to social reality not existing independently of statistical constructions of peoples stories (Smith, 1984). Rather, it is incumbent on the researcher to engage in reflexive practices that ‘liberate’ them from the confines of defined social realities rooted in quantitative data narratives (Dodgson, 2019). While it is not our position or intention to settle this longstanding debate, the tension is worth noting because the use of CAQDAS in this study was not a neutral choice, and the underlying assumptions about extending external validity to Indigenous stories and data in health research speak to the active application of reflexive thinking within the Ethical Research Space fostered as part of our decolonizing methodology. As will be noted below, we found the use of CAQDAS advantageous for multiple reasons, including benefiting from the discussion of its use within the context Indigenous research that aims to decolonize both healthcare and knowledge production systems.

Results

Using MAXQDA for Journey Mapping

MAXQDA was chosen as a robust, internationally respected tool with an easy-to-use interface and accessible support systems and resources. ¹ Rather than the journey being rooted in moving through geographical spaces and time, this study approached the journey as the progression through HIV Care Cascade milestones, opening a site of inquiry that extends beyond physical boundaries, which are key aspects in the original process mapping method noted above. MAXQDA features flexible workspaces that create containers to explore relationships between data points and visualizations to communicate results. Given the complexity of the concepts in focus, including, for example, the social determinants of health specific to Indigenous people living with HIV (Genberg et al.), innovative approaches are needed and useful for exploring phenomena creatively and with the freedom to experiment with data. Finally, MAXQDA autosaves and backs all work up to your chosen destination, ensuring the data remains secure and consistent in the event of hardware or software system failures. While MAXQDA is just one of several highly effective and widely used CAQDAS software options with similar capabilities (NVivo, ATLAS.Ti, Dedoose), we chose MAXQDA due to familiarity, its ease of use, data visualization capabilities, and lower cost.

Data Management, Storage and Analysis

MAXQDA was used to store, organize, analyze, and prepare data for presentation. The first author of this paper (JS) designed both the document system and coding framework based on the study analytical framework that had been previously established. The document system was organized under the “Documents” parent file within the corresponding MAXQDA window with two subsets, one for each of the participant groups. The code system similarly contained two large “parent” groups, one for each participant pool, as well as a third code system specifically to explore codes related to “Systems Change,” an additional analytic frame that supersedes the specific milestone journeys. In parent code groups one and two, there were pre-loaded (deductive) code branches for each milestone of the journey that housed a group for Barriers, Facilitators, Recommendations, and Images, and in parent code group 3 there were prepared codes that captured data related to the six specific conditions of systems change (Kania et al., 2018) (See Figure 2). In addition, space was reserved within code systems for open coding to capture (inductive) insights not anticipated or not aligned with the existing code system.

Figure 2.

Coding Systems

Coding and Code Processing

The coding process involved open and axial coding, which is common in thematic analysis used in grounded theory research (Charmaz, 2006). This form of coding consists of looking for segments of text that signify or represent a discrete idea that aligns with either the pre-established deductive coding framework or new codes related to the research questions. Code definitions were not pre-established due to the familiarity of the analytic framing in place by the first author (JS) responsible for analysing the data. However, memos were created for new codes to ensure fidelity and consistency in their meaning. Each transcript was coded systematically from top to bottom, and segments were coded against each analytic frame.

Within this study, the segment size for codes was limited to complete thoughts that could ‘stand on their own,’ meaning the text highlighted as part of the code was the least possible required for the statement to carry meaning and be understood by outside audiences. In some cases, entire paragraphs were selected, whereas in others, as little as three to four words sufficed. Doing so ensured that coded segments could easily be transposed into publications and reports. Through the coding process, and due to the use of two simultaneous coding frames, some sections were coded twice. For example, a comment about ‘stigma in healthcare settings’ would have been coded in both the Journey Mapping code system as a barrier as well as in the Systems Change code system under the appropriate section. While time-consuming and seemingly redundant, this approach proved highly beneficial in the analysis stage. The entire coding process led to a total of 1,407 data points across 452 codes, including duplicated codes across both analytic frames.

Code memos were generated for frequently occurring codes during and after the coding process. Examples of frequent codes included Stigma, Racism, Lack of Access to Quality Primary Care, and Isolation, each of which were present in both analytic frames. Memos took the form of point form notes capturing salient aspects of the segments within the code in order to track the progress and development of theoretical insights. Certain memo contents were in fact, included in publications that are currently under review, and formed easy batches of text to draw from for a community-facing data interpretation session that we held as part of our study process.

Analysis

Once initial coding was complete, the codes were then grouped into common categories under parent codes (See Figure 3 for an example of parent and subcodes within the Systems Change Analytic Frame).

Figure 3.

Parent Code and Subcodes

Organizing codes into categories serves the purpose of generating concepts, themes and theories (Braun & Clarke, 2024). While some themes may have emerged organically, in this case they were organized into the code system to respond to the research questions, which in this case included looking for evidence of barriers and facilitators and recommendations related to living well with HIV and improving the experience of First Nations people living with HIV as they move through the Care Cascade. Finally, larger groupings of codes that were connected to each other, as determined both by tracking the notes in memos throughout the coding process and also by using the Code Relations Browser in MAXQDA, were bundled into Code Sets (Figure 4). In MAXQDA, “code sets” are useful for creating temporary groupings of codes, allowing you to easily access and activate specific combinations of codes without altering the main code hierarchy (VERBI Software, 2025). In this study, grouping all stigma-related codes into a single code set allowed analysis without altering the original code hierarchy.

Figure 4.

Code Sets

The Code Relations Browser was used to facilitate analysis; it is a function that allows the analyst to determine the proximity of selected codes within a document, the level of overlap in coded segments, or the frequency of codes across a dataset. In this case, the test used was specific to the co-occurrence of specific codes across each of the document groups. This enabled validation that some codes, themes and issues were present along the entire HIV Care Cascade. Not only were some codes frequent across the data, but they were also consistent throughout discussions of each milestone. Similarly, the Code Relations Browser was used to examine the relationships between codes within the Systems Change code system (See Figure 5). Results of that examination revealed that certain coded segments appeared adjacent to others much more frequently than others. For example, stigma and racism were mentioned in close proximity to each other at a much higher rate than any other code indicating that these two concepts are closely linked from the perspective of the participants.

Figure 5.

Code Relations Browser – Proximity of Stigma and Racism Codes

Visual Representation

With data analysis complete, we then moved to developing graphic images to visually present the results of key research questions. The first image creation was centred on portraying the “Journey” of healthcare service providers through the HIV Care Cascade at the conceptual level. Using the MAXMAPS function, the first author (JS) created the image by dragging and dropping specific code groupings (parent codes) into the diagram space and linking them (See Figure 6). Codes were chosen based on their code frequencies, which represented commonly cited ideas, experiences, stories, ultimately representing the ‘weight’ of the specific concept across the data.

Figure 6.

Hierarchical Code-Subcode Models

The value of using MAXMAPS as part of the software package is quite high given the flexibility and creativity that can be woven into representing qualitative data. That said, there were challenges with the linearity and uniformity of its presentation. The linearity is diametrically opposed to the ways in which stories, and the experiences they represent were told. Visual data diagrams were shared with various audiences at conferences and departmental meetings and proved useful in conveying qualitative data to audiences unfamiliar with qualitative methods. We found this to be useful, particularly for scientists and graduate students not at all familiar with qualitative methods or the practice of qualitative data analysis.

The methods and techniques noted above eventually facilitated the interpretation of results. The co-authors for this paper used the tools within MAXQDA to highlight relevant and meaningful findings, which eventually contributed to publications, conference presentations and a community report. MAXQDA made it easy to retrieve coded segments through the use of the search tools within the software, and by activating certain codes and documents to pinpoint exact quotes. While the function of the software as a tool proved purposeful and useful, we will now turn to discussing the methodological aspects of using CAQDAS within Indigenous research that we argue will aid other researchers looking to engage in and potentially replicate this work.

Discussion

General Advantages and Disadvantages

MAXQDA proved useful to set up and administer data consistently for a large project with a variety of team members and data points. Having one person assigned to lead data management and analysis simplified the process of moving through each phase of the analysis while also streamlining requests for data from within the dataset by team members. The technology is also static, secure, and all data are backed up regularly. MAXQDA (and other CAQDAS packages) offer several features that support qualitative research, and while not always relevant, in this case several were useful. As noted above, the visual outputs also proved useful, particularly in communicating qualitative research results to audiences unfamiliar with the practice overall. Challenges of using the software include the requirement for training and support to practice skills; it is the opinion of the first author that using the tool requires repetition to become comfortable with the features and capabilities of the software. While it may be user friendly for experienced users, novice researchers may find it overwhelming at first. The MAXQDA website offers many resources to support learning, included recorded webinars and free training opportunities that were helpful during this project.

Usefulness of MAXQDA With Journey Mapping

MAXQDA was effective for analyzing data from both patient experience mapping and provider process mapping. The software assisted with effectively determining themes and relationships, and the visualization of the data allowed for direct comparisons. Although few journey mapping studies have incorporated data visualization, there are many software packages to help with the data capture and visualization process (for example, Journey Mapper by Touchpoint). While these tools are useful for visualization, they have limited data analysis capabilities, which MAXQDA resolved by bringing both aspects into one workspace.

A critical aspect of our initial study design was our intent to translate the findings into recommendations for health system change. A critique of journey mapping work within the health system has been the lack of integration of the findings to promote systemic change, which is articulated by Joseph et al. (2023) who conducted a scoping review that demonstrated a gap in knowledge regarding integrating the data from journey mapping activities into the ‘learning health system.’ We argue that our experience using MAXQDA demonstrates a tangible response to this claim by equipping us with the tools to develop knowledge products for a variety of audiences, including presentations to students, health policy and program actors, community organizations, and journal articles. We specifically found that the ‘appearance’ of using software to process and visualize qualitative data created a bridge to quantitative researchers accustomed to using software packages to produce results that take the form of data tables and graphs. We also found value in being able to create images that communicated complex ideas through the use of code symbols, which in publications and conference presentations spoke to a broader audience, particularly alongside quotes from transcripts. Each of these examples are offered as resources to knowledge translation and mobilization within interdisciplinary health contexts where time (for example at conferences or meetings with decision makers), or space in academic journals or reports are limited and scarce.

Capturing Nuance and Non-Linearity

A key insight that emerged throughout this process was the need to capture the non-linearity of the stories shared with us during data collection. For example, it was rare to hear participants talk about moving through the HIV Care Cascade in any common or sequential order, nor was it natural for participants to describe their experiences sequentially. The lived and living experience of the participants were much more complex and involved many entries into, and exits from, the cascade of care spanning – in some cases – decades. We were also able to manage the complexity of experiences within each milestone in non-linear ways, including positive and negative experiences within each milestone, often occurring at the same time. For example, participants would move through sharing stories of trauma to stories of resilience at various points in their journey, which in some cases spanned entire decades. MAXQDA made it easy to assign codes to the corresponding milestone, supported by interview transcripts that held the entire context intact. The outcome of this was that under some parent codes there were codes that reflected trauma, pain, challenges, discrimination, and under others there were more positive codes, such as hope, stability, and reconnecting with community, which through the actual interview were woven into experiential narratives that may have been challenging to interpret without MAXQDA.

Methodological Tensions: Indigenous Decolonizing Research and “Colonizing Data”

As the analysis process unfolded, the co-authors reflected on and discussed the role that software plays in potentially “colonizing data,” through the machination of lived experiences into usable knowledge products and how it fits within the broader decolonizing lens and aims of the project. One example of the process involved with producing knowledge products in the Western sense involved coding and theming data, which are not necessarily aligned with Indigenous ways of meaning making. While some research has spoken to this and recommended coding in the original language of the community in focus to ensure that nuance and temporality are maintained according to Indigenous ontologies (Bird et al., 2009; Wan, 2018), our data collection was conducted in English, which was the first language of our participants. We recognize and appreciate that storytelling and narration are considered Indigenous cultural practices for sharing knowledge (Kovach, 2021; Smith, 2019) that when used within research, privileges the voice of Indigenous research participants. The act of creating space and spending time sharing perspectives, including oral histories, is a method used by Indigenous people for generations to share information, transmit culture, and organize as a community. This prompted us to consider whether the use of technology to “treat” their stories as data, including through the assignment of meaning to codes and themes that were not derived from Indigenous languages, led to potentially diluting or obfuscating their meaning or cultural significance and what, if any, was the impact of the use of software on mitigating or promoting colonial harms?

Our approach to addressing this was twofold. First, within our team, we held true to the philosophies of Two-Eyed Seeing, which encouraged us to present balanced views of the data at all times. We attempted to accomplish this by keep statements fully intact within the coded segment and by ensuring that any text or quotes used would not further stigma or discriminate our participants in any way. We were thoughtful of how their words could be interpreted, and committed to providing the context surrounding the statement, either in writing within publications, or in discussion in research conference settings, to encourage understanding of the true meaning of the words shared with us throughout this project. And second, we engaged our project Elder in all knowledge translation and dissemination activities, including in writing publications and presenting results. This led to corrections, suggestions, and learnings that were integrated to sharing study results with various audiences. Finally, we committed to engaging in reflexivity that led to many conversations within our team about how our positionality as researchers in relation to the participants within this study is relevant to the practice of the research itself, which according to Davies et al. (2023) is often missing in journey mapping research.

Recommendations

The process described here may be of use to researchers considering journey mapping in health research with First Nations communities (or others) and/or the use of CAQDAS to enhance and support that effort. Overall, we found MAXQDA to be useful as a tool in pursuit of our research objectives, particularly in relation to communicating results. The use of MAXQDA to support data analysis within a Journey Mapping project that also sought to examine opportunities for systems change was quite helpful, and the software opened up possibilities for generating impactful results. Among the insights and innovations noted is the ability to illuminate connections between complex ideas in data related to systems change efforts, to track non-linear journeys through complex experiences over time, and visualize such data in clear and concrete ways. For these reasons, we recommend other researchers take up the use of CAQDAS in similar work.

When considered at a bird’s eye view, and with the knowledge that these stories and experiences revolve around the social and health conditions of each participant, we were able to see that the HIV Care Cascade is – in reality – not a cascade. Rather, it is set up as a series of benchmarks or milestones that the health system uses to structure and provide care for people living with HIV. This leads to a key recommendation: health systems should reconsider the linearity of the model and invite the voices of those affected by HIV to reconfigure it in ways that reflect their true journey and experiences. The same is true for the use of both journey mapping and the HIV Care Cascade in international contexts, including areas where HIV is endemic, and where efforts to address the virus’ impacts are led by multi-national development organizations funded by Western-backed aid sources. While the HIV Care Cascade and forms of patient-oriented research are useful concepts within the Western paradigm in which they were conceived, localized, cultural beliefs and principles of meaning-making should be woven into HIV research with Indigenous communities abroad.

Regarding the use of CAQDAS in decolonizing research, we found that engaging in and explicitly naming reflexive practices during dissemination proved useful in navigating the tensions of using technology to support and analyze Indigenous stories as data. Reflexive practices employed during the analysis process led to critical reflections of the data and the process itself, deepening our relationship to the research, participants, and the outcomes. As such, our recommendation for any researchers choosing to engage in this work is to consider the role that reflexivity will play, particularly as it relates to the “treatment” of stories shared by Indigenous people. This practice contributes not only to the quality and rigour expected in qualitative health research, but it also invites critical analysis of the role that research plays in the re-telling and sense-making of people’s stories.

Conclusion

The NHJMP examined the lived experiences of both First Nations people with lived experience and healthcare providers who supported their journeys through the HIV Cascade of Care. The study employed a decolonizing, and Two-Eyed Seeing approach that grounded the research in an Ethical Research Space. In addition to identifying opportunities for Systems Change and the addressing the barriers and facilitators within the six milestones of the Cascade of Care itself, this study adopted a novel methodological approach that embodied the values of the research team in support generating policy and program recommendations that aimed to support positive change. This work has outlined the methodology portion of this project and highlights novel insights and innovative ways of using CAQDAS to pursue the research objectives. Throughout that process, key insights include practical tips and strategies for using MAXQDA and for journey mapping, specifically. But also, a broader tension surfaced that researchers should and likely will need to reflect on related to weaving Western technologies into the treatment of Indigenous data and stories. Data validation by key stakeholders, supported by reflexivity, is a key strategy to help surface and address these tensions.