Reparative Engagement and Knowledge Democracy in Tuberculosis Education: A Secondary Data Analysis of Community Knowledge and Participation in Rural Eastern Cape, South Africa

1. Introduction

Tuberculosis (TB) remains one of the leading infectious causes of morbidity and mortality worldwide and continues to represent a major public health challenge in South Africa, which remains among the countries with a high burden of TB [1,2]. Despite substantial advances in TB diagnosis, treatment, and prevention, the disease disproportionately affects socially and economically disadvantaged populations, particularly those living in rural and historically underserved communities characterized by poverty, overcrowding, limited health literacy, and restricted access to healthcare services [3,4,5,6]. These interconnected social and structural determinants may contribute to delayed diagnosis, treatment interruptions, ongoing community transmission, and adverse health outcomes. In South Africa, the TB epidemic is closely linked to persistent socioeconomic inequalities and the substantial burden of HIV [7]. Populations living in informal settlements, rural communities, and other resource-constrained settings experience heightened vulnerability to TB because of intersecting social, economic, environmental, and health-system factors [8]. Evidence from systematic reviews indicates that TB burden is particularly concentrated among vulnerable populations, including people living with HIV and groups experiencing socioeconomic marginalisation [9,10]. These disparities reinforce the need for public health strategies that address not only the biomedical dimensions of TB but also the social and structural determinants that influence exposure, healthcare access, diagnosis, treatment, and recovery [11,12].

The Eastern Cape Province is characterised by substantial socioeconomic and health inequalities and continues to experience a considerable burden of TB [13]. Rural communities within the province face multiple barriers to healthcare access and engagement, including poverty, transport constraints, geographical distance, limited health-system resources, and delays in healthcare-seeking [14,15,16,17]. These intersecting challenges highlight the importance of approaches that strengthen health literacy, improve equitable access to TB prevention and care, and meaningfully incorporate community perspectives into public health responses.

Although biomedical interventions remain fundamental to TB control, engagement with prevention, testing, treatment, and care is also influenced by behavioural, social, cultural, and structural factors [18]. Limited health literacy, misinformation, stigma, fear of diagnosis, and mistrust of healthcare services may discourage timely healthcare seeking and reduce engagement with TB services [19,20,21,22,23]. Health education approaches that rely predominantly on unidirectional transmission of biomedical information may be insufficient where local experiences, cultural understandings, structural constraints, and relationships between communities and health institutions strongly influence health-related decisions. Greater attention to community-generated and experiential knowledge may therefore complement conventional health education approaches.

Knowledge democracy provides a useful conceptual framework for recognizing multiple forms and sources of knowledge and for considering communities as contributors to, rather than solely recipients of health knowledge [24,25,26,27]. Within public health, this perspective foregrounds participatory dialogue, co-learning, epistemic inclusion, and recognition of experiential and locally situated knowledge alongside biomedical expertise. Reparative engagement, in turn, emphasizes the relational dimensions of participation, including trust, reciprocity, accountability, institutional responsiveness, and sustained engagement between communities and health institutions [28,29,30]. Although conceptually related, the two frameworks address different dimensions of community engagement: knowledge democracy focuses principally on whose knowledge is recognized and valued, whereas reparative engagement focuses on how relationships between communities and institutions can become more equitable, reciprocal, and responsive. Considered together, they provide complementary lenses through which TB knowledge, healthcare engagement, and community-informed approaches to health education can be examined.

Participatory approaches involving community health workers, peer educators, people with lived experience of TB, and community dialogue have increasingly been incorporated into efforts to improve health communication, address stigma, strengthen trust, and support engagement with TB prevention and care [31,32,33,34,35]. Knowledge, Attitudes and Practices (KAP) surveys can provide valuable insights into community knowledge, beliefs, experiences, behaviours, and perceived barriers influencing healthcare engagement [36,37]. However, conventional interpretation of KAP data frequently focuses on identifying deficits in individual knowledge or behaviour, with comparatively less attention to how experiential knowledge, community agency, relationships with health institutions, and structural conditions might shape those findings.

An important conceptual and empirical gap therefore remains in understanding how routinely collected community KAP data can be interpreted beyond a predominantly knowledge-deficit perspective. Limited research has examined TB knowledge and healthcare engagement through the complementary lenses of knowledge democracy and reparative engagement in rural South African settings [16,38,39]. Applying these frameworks to existing community evidence may provide a means of examining both the epistemic dimension of TB education, whose knowledge is recognized and incorporated, and its relational dimension, how trust, reciprocity, responsiveness, and participation influence engagement between communities and health services.

Accordingly, this study presents a secondary analysis of a community-based TB KAP survey conducted among adults in Ntabankulu, Eastern Cape, South Africa. The study aimed to examine TB knowledge, personal and family experience of TB, and perceived barriers to TB testing and healthcare engagement, and to interpret these findings through the complementary frameworks of knowledge democracy and reparative engagement. These frameworks were applied as interpretive lenses rather than participant-level measured constructs. The study further explored community preferences for TB education and engagement to identify priorities that could inform the future co-design and prospective evaluation of culturally and contextually responsive approaches to TB prevention and care.

2. Methods

2.1. Study Design and Setting

This study was a secondary analysis of data from a quantitative, cross-sectional Knowledge, Attitudes and Practices (KAP) survey conducted among adult community members in Ntabankulu, Eastern Cape Province, South Africa. The original survey assessed community knowledge, attitudes, experiences, and practices related to tuberculosis (TB), including knowledge of TB transmission, symptoms, prevention, diagnosis, and treatment; perceived barriers to accessing TB services; and community perspectives on TB education and healthcare engagement.

For the present study, the existing dataset was re-analysed to examine associations between TB knowledge and selected sociodemographic characteristics, personal and family experience of TB, perceived barriers to healthcare engagement, and community preferences for TB education. The empirical findings were subsequently interpreted through the complementary conceptual frameworks of knowledge democracy and reparative engagement. These frameworks were applied retrospectively as interpretive lenses and were not prospectively operationalized or measured as participant-level constructs in the original survey. Accordingly, the analysis did not seek to quantitatively measure knowledge democracy or reparative engagement, but rather to use these concepts to contextualize patterns identified in the survey data. Ntabankulu is a predominantly rural area of the Eastern Cape Province characterized by dispersed settlements, socioeconomic disadvantage, and challenges in accessing healthcare services. These contextual characteristics make the setting relevant for examining how access to health information, socioeconomic circumstances, personal and family experiences of TB, and barriers to healthcare access intersect with community TB knowledge and engagement. The rural context is particularly important given the continuing need for contextually responsive approaches to TB prevention, health education, and healthcare engagement in underserved communities.

2.2. Study Population, Eligibility, and Sampling

The original survey included adult community members residing in Ntabankulu, Eastern Cape Province, South Africa. Individuals were eligible to participate if they were aged ≥18 years, resided in the study area, provided informed consent, and agreed to participate in the survey. Individuals younger than 18 years, those who did not reside within the study area, and those who were unable or unwilling to provide informed consent were not eligible for participation.

A non-probability convenience sampling approach was used to recruit eligible community members who were reached during community engagement and outreach activities conducted within the study area. Potential participants who met the eligibility criteria were invited to participate, and written informed consent was obtained before the questionnaire was administered. The original survey enrolled 131 participants.

The sample size for the present study was determined by the number of eligible records available from the completed original KAP survey rather than by a new prospective sample-size calculation. As this was a secondary analysis of an existing dataset, all available records meeting the eligibility requirements for the present analysis were considered for inclusion. The analytical sample, therefore, comprised the maximum available sample from the original survey for which the variables required to address the study objectives were available. No additional participants were recruited, and no new participant contact or primary data collection was undertaken.

Prior to analysis, records were assessed for completeness with respect to the primary outcome, TB knowledge, and the sociodemographic, experiential, and healthcare-engagement variables required for the study. No observations included in the reported analyses contained missing data requiring imputation or exclusion; consequently, all 131 eligible records were retained in the final analytical sample. Because participants were recruited through community engagement and outreach activities using a non-probability convenience sampling approach, the sample was not intended to provide a statistically representative estimate of the entire adult population of Ntabankulu. Individuals reached through these activities may have differed from community members who were not reached in terms of previous exposure to health information, healthcare utilization, TB awareness, or willingness to engage in health-related activities. Accordingly, estimates derived from this sample should be interpreted within the context of the study population, and potential selection bias should be considered when assessing the external validity and generalisability of the findings.

2.3. Data Collection and Data Quality

Data for the original survey were collected using a structured questionnaire administered by trained fieldworkers. The questionnaire captured sociodemographic characteristics; knowledge and awareness of TB; personal and family history of TB; perceived barriers to TB testing, treatment, and healthcare access; community perceptions of TB; and preferences relating to TB education and healthcare engagement. Fieldworkers followed standardized procedures for questionnaire administration to promote consistency in data collection. Before the present analysis, the dataset was reviewed for completeness, coding consistency, duplicate records, out-of-range values, and implausible observations. Variables used in the analysis were subsequently checked against the predefined coding framework before statistical analysis.

2.4. Patient and Public Involvement

The present study involved a secondary analysis of an existing community-based survey dataset. Community members and patients were not directly involved in formulating the secondary research questions, selecting the conceptual frameworks, conducting the statistical analysis, interpreting the findings, or preparing the manuscript. As no additional participant recruitment, participant contact, or primary data collection was undertaken, the secondary analysis imposed no additional burden on participants.

The absence of direct community involvement in the secondary analytical process is explicitly acknowledged, particularly because knowledge democracy and reparative engagement were applied as interpretive frameworks. Accordingly, the present study should not be considered a co-produced research process. Rather, these frameworks were used to interpret existing empirical findings and to identify priorities for future participatory research. The findings are intended to inform future studies in which community members, people with lived experience of TB, community health workers, healthcare providers, and other local stakeholders can participate more directly in the co-design, implementation, interpretation, and evaluation of TB education and engagement interventions. Study findings will be disseminated through peer-reviewed publications, scientific meetings, and, where feasible, appropriate community and stakeholder engagement platforms to support future TB education and community-engagement initiatives.

2.5. Study Variables and Measurement of TB Knowledge

The primary outcome was TB knowledge, assessed using questionnaire items covering key domains of TB transmission, signs and symptoms, prevention, diagnosis, and treatment. Responses to individual knowledge items were combined to generate a cumulative TB knowledge score. Participants were subsequently classified into low, moderate, or high TB knowledge categories according to the predefined scoring framework presented in Supplementary Table S1.

Independent variables examined in relation to TB knowledge included age, sex, educational attainment, employment status, personal history of TB, family history of TB, perceived barriers to TB testing and healthcare engagement, healthcare access, and selected community perceptions.

For the purposes of the present analysis, personal and family experience of TB was defined specifically as participants’ self-reported personal history of TB and/or reported history of TB among family members. These variables were treated as indicators of experiential exposure to TB and were not considered comprehensive qualitative measures of lived experience.

Perceived barriers to healthcare engagement comprised participant-reported factors that could potentially influence TB testing, treatment-seeking, or access to healthcare services. This included stigma, fear of diagnosis, misinformation, transport or geographical access constraints, and other barriers captured in the original questionnaire. These variables reflected participants’ perceptions and were therefore not interpreted as objectively measured indicators of health-system performance or healthcare accessibility.

2.6. Statistical Analysis

Data were analysed using IBM SPSS Statistics version 29.0 (IBM Corp., Armonk, NY, USA), and graphical presentations were generated using GraphPad Prism version 10 (GraphPad Software, San Diego, CA, USA). Participant characteristics and TB knowledge outcomes were summarised using descriptive statistics. Categorical variables were presented as frequencies and percentages. Continuous variables were summarised using means and standard deviations (SDs) when approximately normally distributed and medians and interquartile ranges (IQRs) when distributions were non-normal. Ordinal variables were summarised using frequencies and percentages or medians and IQRs, as appropriate.

Associations between categorical participant characteristics and TB knowledge categories were assessed using Fisher’s exact test, which was selected where expected cell frequencies were small. For comparisons of continuous or ordinal variables across the three TB knowledge categories, the Kruskal–Wallis test was used when the assumptions of parametric tests were not met. Where applicable, the statistical test used for each comparison is reported alongside the corresponding results.

All statistical tests were two-sided, and a p-value < 0.05 was considered statistically significant. Given the exploratory nature of the analysis, statistical significance was interpreted alongside the magnitude and direction of observed differences rather than as evidence of causality.

The analysis was primarily exploratory and association-based. Because the original survey employed a cross-sectional design, temporal relationships could not be established, and observed associations were not interpreted as causal. Furthermore, where analyses were bivariate, associations were not interpreted as independent effects because residual confounding by sociodemographic, socioeconomic, experiential, healthcare access, and other unmeasured characteristics could not be ruled out. Before statistical analysis, the dataset was systematically assessed for completeness, coding consistency, duplicate observations, missing values, out-of-range values, and implausible observations. No variables included in the reported analyses contained missing observations requiring imputation or case-wise exclusion; therefore, no missing-data imputation was performed, and all eligible observations were retained in the relevant analyses. The study was reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement to promote transparent and complete reporting of the observational study design, analysis, and findings.

2.7. Conceptual Framework and Analytical Application

The findings were interpreted using the complementary frameworks of knowledge democracy and reparative engagement. Knowledge democracy recognizes that legitimate health knowledge can arise from multiple sources and emphasizes the value of community and experiential knowledge alongside biomedical and professional expertise. Reparative engagement emphasizes trust, reciprocity, relational accountability, institutional responsiveness, and meaningful participation in addressing historically and structurally embedded health inequities. Although conceptually related, the frameworks address different dimensions of community engagement. Knowledge democracy primarily concerns whose knowledge is recognized, valued, and incorporated into health communication and decision-making, whereas reparative engagement focuses on the quality of relationships between communities and institutions, including trust, reciprocity, responsiveness, and accountability. Their complementary application, therefore, enabled consideration of both epistemic and relational dimensions of TB education and healthcare engagement.

Importantly, neither knowledge democracy nor reparative engagement was directly measured as a participant-level construct in the original KAP survey. The original questionnaire was not designed or validated to quantify either framework. Instead, the frameworks were applied retrospectively during the secondary analysis as interpretive lenses to contextualize empirical findings on TB knowledge, personal and family experiences of TB, perceived barriers to healthcare engagement, and participant preferences for TB education. To enhance transparency and reduce the risk of post hoc overinterpretation, empirical survey domains were mapped to the two frameworks according to the conceptual relationships shown in Table 1. This mapping was used to organize interpretation rather than to generate new quantitative variables, scores, or causal relationships.

2.8. Ethical Considerations

Ethical approval for the original study was obtained from the Walter Sisulu University Faculty of Health Sciences Research Ethics and Biosafety Committee (Reference No. WSU HREC 06/2025; approved 5 June 2025). Administrative permission to conduct the study was obtained from the Eastern Cape Department of Health (Reference No. EC_202506_011; approved 12 June 2025). All participants provided written informed consent before enrolment in the original study. Participation was voluntary, and the data used in the present secondary analysis were anonymized and de-identified prior to analysis. No additional participant recruitment, direct participant contact, intervention, or prospective data collection was undertaken for the present study. The secondary analysis was conducted using the existing anonymized dataset, within the scope of the approved research and applicable institutional requirements for the secondary use of research data. Participant confidentiality was maintained throughout data management, analysis, and reporting, and no directly identifying information was available to the analytical team. All procedures were conducted in accordance with the ethical principles of the Declaration of Helsinki and applicable institutional standards for research involving human participants.

3. Results

3.1. Participant TB Knowledge Levels

Among the 131 participants, most (64.9%) demonstrated moderate TB knowledge, while 23.7% had high TB knowledge. Only a small proportion had low TB knowledge. The distribution of TB knowledge levels is presented in Figure 1.

The figure illustrates the proportion of participants classified as having low, moderate, and high TB knowledge based on their overall scores obtained from the TB knowledge assessment questionnaire.

Abbreviations: TB, tuberculosis.

3.2. Educational Attainment and TB Knowledge

Educational attainment was significantly associated with TB knowledge (p<0.001). Participants with tertiary education were more likely to have high TB knowledge, whereas those with lower educational attainment were predominantly classified within the moderate- and low-knowledge categories. More than half (52%) of participants in the high-knowledge group had completed tertiary education, whereas none in the low-knowledge group had attained tertiary education (Figure 2).

The figure illustrates the distribution of TB knowledge categories according to participants’ highest level of educational attainment. Higher levels of education were associated with progressively greater proportions of participants classified within the high-knowledge category.

Abbreviations: TB, tuberculosis.

Footnote: Educational attainment was categorized according to participants’ highest completed level of formal education. Associations between educational attainment and TB knowledge categories were assessed using Fisher’s exact test. A statistically significant association was observed (p < 0.001).

3.3. Lived Experience and TB Knowledge

Participants with a personal history of TB demonstrated higher TB knowledge than those without previous TB infection. Similarly, participants reporting a family history of TB were more likely to demonstrate moderate or high TB knowledge than those without known household exposure. The relationship between lived TB experience and TB knowledge is presented in Figure 3.

The figure illustrates the distribution of TB knowledge categories according to participants’ personal or family history of TB. Participants with previous TB experience or a family history of TB generally demonstrated higher levels of TB knowledge than those without prior exposure.

Abbreviations: TB, tuberculosis.

Footnote: Lived TB experience was defined as self-reported previous TB infection and/or a family history of TB. Knowledge levels were categorized as low, moderate, or high based on participants’ scores on the TB knowledge assessment questionnaire.

3.4. Barriers to TB Testing and Healthcare Engagement

Participants with lower TB knowledge reported more barriers to TB testing and healthcare engagement than those with moderate or high knowledge. Frequently reported barriers included fear of receiving a TB diagnosis, TB-related stigma and discrimination, misinformation about TB transmission and treatment, limited access to healthcare services, transportation challenges, and broader socioeconomic constraints. The distribution of reported barriers across TB knowledge categories is shown in Figure 4.

The figure illustrates the frequency of reported barriers to TB testing and healthcare engagement among participants classified as having low, moderate, or high TB knowledge. Barriers assessed included fear of diagnosis, stigma and discrimination, misinformation regarding TB, limited healthcare access, and structural or socioeconomic challenges.

Abbreviations: TB, tuberculosis.

Footnote: Participants could report more than one barrier to TB testing and healthcare engagement; therefore, percentages may not total 100%. TB knowledge categories were derived from scores on the TB knowledge assessment questionnaire and classified as low, moderate, or high.

3.5. Community-Driven Strategies for TB Education

Participants identified several community-driven strategies to strengthen TB education and healthcare engagement. The most frequently suggested approaches included survivor storytelling, peer education, greater involvement of community health workers, culturally appropriate health messaging, and participatory community dialogue. Participants also emphasised the importance of delivering TB education in local languages and through trusted community structures. These proposed strategies are summarised in Figure 5.

The framework summarizes community-identified strategies for strengthening TB awareness and healthcare engagement, including survivor storytelling, peer education, community health worker involvement, culturally tailored health communication, and participatory dialogue platforms. The framework illustrates how these approaches may contribute to improved community knowledge, reduced stigma, enhanced trust, and greater engagement with TB prevention and care services.

Abbreviations: TB, tuberculosis.

Footnote: The conceptual framework was developed from themes identified during the secondary analysis and informed by the principles of reparative engagement and knowledge democracy. The framework is intended to illustrate potential pathways for strengthening community participation in TB education and should not be interpreted as a causal model.

4. Discussion

This secondary analysis examined tuberculosis (TB) knowledge, healthcare engagement, and community-driven solutions in a rural South African community through the complementary frameworks of knowledge democracy and reparative engagement. Three key findings emerged. First, most participants demonstrated moderate TB knowledge, indicating general awareness but persistent knowledge gaps [40]. Second, educational attainment and lived TB experience were associated with higher TB knowledge. Third, participants identified stigma, fear of diagnosis, misinformation, limited healthcare access, and socioeconomic constraints as important barriers to TB testing and healthcare engagement [41]. These findings highlight the need for community-centred approaches that address the social and structural determinants of TB alongside biomedical interventions [33].

Although most participants demonstrated moderate TB knowledge, important gaps remained in their understanding of TB prevention, transmission, diagnosis, and treatment. Similar findings have been reported across rural and resource-constrained settings in sub-Saharan Africa, where awareness has improved, but misconceptions and delayed healthcare-seeking persist [42,43]. This distinction between awareness and health literacy is important because recognizing TB does not necessarily translate into timely healthcare utilization or informed decision-making [44,45].

Educational attainment was strongly associated with TB knowledge, with participants who had a tertiary education more likely to demonstrate high knowledge. This finding is consistent with previous studies showing that education improves health literacy, access to health information, and healthcare utilization [46]. However, educational inequalities remain common in rural South Africa, highlighting the need for accessible, community-based health education strategies that complement formal education and reach populations with limited educational opportunities [41].

Participants with personal or family experience of TB demonstrated greater TB knowledge, reinforcing the importance of experiential learning. Consistent with previous studies, lived experience appears to enhance understanding through interactions with healthcare providers, treatment programmes, and family support networks [47,48]. From the perspective of knowledge democracy, these findings support recognising experiential and community-generated knowledge as valuable complements to biomedical knowledge [49]. Incorporating TB survivors and affected families into health promotion activities may therefore strengthen community education and improve engagement with TB services.

Participants also identified stigma, fear of diagnosis, misinformation, limited healthcare access, and socioeconomic constraints as major barriers to TB testing and care. These findings are consistent with previous studies showing that social and structural barriers continue to delay diagnosis and reduce treatment uptake in high-burden settings [49,50]. Addressing these barriers requires more than information campaigns alone and calls for community engagement strategies that acknowledge local realities and build trust between healthcare services and communities.

The findings further support the relevance of reparative engagement as a framework for strengthening TB prevention and control. By promoting trust, reciprocity, dialogue, and meaningful community participation, reparative engagement provides opportunities to address historical and structural inequities that influence healthcare engagement [48,50]. Participants’ recommendations, including survivor storytelling, peer education, community health worker involvement, culturally appropriate messaging, and participatory dialogue, align with evidence supporting community-based participatory approaches to TB control [6,7,8,51].

From a public health perspective, these findings suggest that community engagement should be integrated into routine TB programmes rather than implemented as isolated outreach activities. Community-responsive health systems that recognize local knowledge and lived experience may improve health literacy, strengthen trust, increase healthcare utilization, and enhance the sustainability of TB prevention and control programmes [31,51].

4.1. Implications for Practice and Policy

The findings have several implications for TB control programmes. First, TB education should use culturally appropriate and community-centred approaches that promote dialogue rather than one-way information delivery. Secondly, community engagement should be recognized as a core component of TB prevention and control. Third, greater investment in community health workers, peer educators, and survivor-led initiatives may strengthen trust, improve health literacy, and enhance healthcare engagement. Finally, programme monitoring should include measures of community participation, health literacy, and trust alongside conventional clinical indicators.

4.2. Strengths and Limitations

A major strength of this study is its application of the complementary frameworks of knowledge democracy and reparative engagement to the interpretation of TB knowledge, healthcare engagement, and community-informed approaches to health education in a rural South African setting. By considering experiential and community knowledge alongside conventional biomedical perspectives, the study extends the interpretation of Knowledge, Attitudes and Practices (KAP) data beyond individual knowledge deficits and highlights the social, relational, and structural contexts in which TB knowledge and healthcare engagement occur. The use of data generated within an underserved rural community further provides contextually relevant evidence from a population in which barriers to healthcare access and health information remain important public health concerns. The inclusion of educational attainment, personal and family experience of TB, perceived barriers to care, and community preferences for TB education enabled the analysis to consider multiple dimensions of community knowledge and engagement.

Several limitations should, however, be considered when interpreting the findings. First, the cross-sectional design precludes the determination of temporal or causal relationships. Associations between educational attainment, personal or family experience of TB, perceived barriers, and TB knowledge should therefore not be interpreted as evidence that these factors caused differences in knowledge or healthcare engagement. Similarly, the study did not prospectively evaluate whether the community-informed strategies identified by participants improved TB knowledge, reduced stigma, increased testing, or improved treatment outcomes.

Second, the relatively small sample of 131 participants from a single rural setting limits statistical power and the generalisability of the findings to the wider population of the Eastern Cape or other rural South African communities. Participants in the original survey were recruited through community engagement and outreach activities, which may also have introduced selection bias if individuals participating in such activities differed systematically in TB awareness, previous exposure to health information, healthcare engagement, or willingness to participate from community members who were not reached. The findings should therefore be interpreted as context-specific rather than population-representative.

Third, information was predominantly self-reported and may consequently be affected by recall, reporting, and social desirability biases. Personal and family histories of TB, perceived barriers to healthcare engagement, and reported preferences for TB education may therefore not fully reflect objectively measured experiences or behaviours. Furthermore, TB knowledge was categorised as low, moderate, or high using a cumulative questionnaire-based scoring system. Although this approach facilitated comparison between groups, categorisation may reduce information contained in the underlying knowledge scores and is dependent on the validity and appropriateness of the thresholds used to define the respective knowledge categories.

Fourth, the statistical analyses primarily examined associations between individual participant characteristics and TB knowledge. Potential confounding and interactions between educational attainment, age, socioeconomic circumstances, employment, previous TB exposure, healthcare access, and other characteristics may therefore not have been fully accounted for. The observed associations, particularly those involving education and lived TB experience, should consequently be interpreted as exploratory rather than as independent causal determinants of TB knowledge.

Fifth, because this was a secondary analysis, the investigation was restricted to variables and questions included in the original KAP survey. The original questionnaire was not prospectively designed to operationalise or directly measure the constructs of knowledge democracy or reparative engagement. These frameworks were instead applied retrospectively as interpretive lenses to contextualise the empirical findings. Consequently, the study does not provide direct quantitative measurement or validation of either framework and should not be interpreted as demonstrating the effectiveness of reparative engagement or knowledge-democracy-based interventions.

Sixth, although the study foregrounds community knowledge and participation, community members were not directly involved in formulating the secondary research questions, analysing the data, interpreting the findings, or preparing the manuscript, as acknowledged in the Patient and Public Involvement statement. This represents an important methodological limitation in applying a knowledge-democracy perspective, as the interpretation ultimately remains researcher-led. Future studies should therefore move beyond retrospective interpretation towards genuine co-production by involving community members, TB survivors, community health workers, and other local stakeholders throughout the research process.

Finally, the community-driven strategies identified in this study, including survivor storytelling, peer education, community health worker involvement, culturally appropriate communication, and participatory dialogue, represent participant-informed priorities and conceptual pathways rather than interventions tested for effectiveness in the present study. Prospective implementation and evaluation studies are required to determine whether these approaches improve health literacy, reduce stigma, strengthen trust, increase timely TB testing, or enhance engagement with TB prevention and care. Despite these limitations, the study provides contextually grounded and hypothesis-generating insights into the relationships among TB knowledge, educational attainment, personal and family experience of TB, and perceived barriers to healthcare engagement in a rural South African community. Importantly, it provides a conceptual foundation for future participatory research in which knowledge democracy and reparative engagement can be prospectively operationalized, co-developed with communities, and evaluated using appropriate quantitative, qualitative, and implementation-science methods.

5. Conclusion

This secondary analysis demonstrates that TB knowledge and healthcare engagement in a rural Eastern Cape community are shaped by the intersection of educational attainment, personal and family experience of TB, and broader social and structural barriers. Although most participants demonstrated moderate TB knowledge, important gaps remained, while stigma, fear of diagnosis, misinformation, healthcare access constraints, and socioeconomic challenges continued to influence engagement with TB testing and care.

The findings further highlight the potential value of recognising community and experiential knowledge alongside biomedical expertise. Interpreted through the complementary lenses of knowledge democracy and reparative engagement, participants’ preferences for survivor storytelling, peer education, community health worker involvement, culturally and linguistically appropriate communication, and participatory dialogue identify potential priorities for developing more responsive approaches to TB education. However, these frameworks were applied retrospectively as interpretive lenses and were not directly measured or prospectively evaluated in the original survey. The findings, therefore, should not be interpreted as evidence that these approaches improve TB outcomes.

Future research should move beyond consultation toward genuine co-production by involving community members, TB survivors, community health workers, and other local stakeholders in the design, implementation, interpretation, and evaluation of TB education interventions. Prospective and implementation studies are needed to determine whether community-informed approaches grounded in knowledge democracy and reparative engagement improve TB knowledge, reduce stigma, strengthen trust, facilitate timely healthcare-seeking, and enhance engagement in TB prevention and care.

Overall, this study suggests that strengthening TB education in rural settings requires more than transferring biomedical information to communities. It requires recognizing communities as partners in knowledge production and creating equitable mechanisms that enable biomedical expertise, lived experience, and local knowledge to inform culturally responsive public health practice.