Uncovering systemic barriers related to equity, diversity and inclusion in child health research: a scoping review addressing marginalised communities

Systemic barriers

We identified an increased number of publications during and after the COVID-19 pandemic, reflecting a heightened awareness of structural racism and health inequities evident during this time. Members of marginalised communities navigate multiple challenges, starting from under-representation in research samples and recruitment barriers. Power dynamics and lack of cultural safety—which extends beyond mere cultural competence to encompass inclusive environments—are crucial in research where communication and power dynamics pose challenges. Black and racialised individuals, like gender and sexually diverse youth, can feel ‘othered’ in the research processes. Evidence suggests gender81 and race82 concordance in care influences patients’ degree of control and comfort. Similarly, demographic concordance in research can facilitate communication, cultural safety, trust and community links. Additionally, academic pipelines for black and racialised individuals have unique challenges. As researchers, black and racialised individuals can experience racism, harassment and particularly tokenism and the ‘minority tax’. Recognising the interconnected struggles of black and racialised individuals underscores the need for antiracist methods spread throughout the research process.83

Various social and demographic characteristics are conceptualised and used in problematic ways. Our results suggest few studies conceptualise race as a social construct. Race can also be used as a proxy for SES and even be categorised as a risk factor. Racism, not race, should be conceptualised as a risk factor;84 if there is no alternative, race can be used as a risk marker.52 Future research should focus on developing and improving paediatric psychometric measurements of racism49 and measurement of structural racism.85 Other forms of discrimination, such as Islamophobia,86 have a profound impact on mental health. Future research could inquire into how these forms of discrimination (eg, Islamophobia, xenophobia, transphobia) impact child health.

Our findings suggest Indigenous health equity is not part of the vision and aims of health databases. Similar gaps could exist in child health research institutes and initiatives. Indigenous scholars highlight difficulties securing long-term funding, culturally insensitive research(ers) and limited Indigenous workforce capacity. These issues further underscore the need for culturally sensitive and ethically grounded Indigenous research. One Child Every Child—a Canadian-led international interdisciplinary research initiative—has embraced Parallel Paths to advance Indigenous scholarship and perspectives alongside non-Indigenous research.87 Similar approaches could ensure institutional support and resources needed for long-term collaborative research relationships. In Canada, the First Nations Information Governance Centre has suggested adopting the principles of Ownership, Control, Access and Possession to honour Indigenous traditions as information and story gatherers and ensure Indigenous self-determination over data collection processes, management, and use.88

Evidence from reviews on developmental and oral research66 67 suggests children with disabilities are systemically under-represented, hindering their participation rights and challenging our understanding of different developmental pathways. The literature underscores the need for inclusive methodologies to increase representation and promote more active involvement throughout the research process. Future research should evaluate the exclusion rate in other fields of child health research and adapt and innovate inclusive methodologies. In doing so, researchers need to be mindful about the different types of barriers children can face according to their impairment (ie, physical, blindness or low vision, deaf or hearing, or cognitive), as well as the different methodological tools and considerations to overcome these barriers.89 The variety of barriers and strategies underscores that there is no one-size-fits-all for inclusive research. Most importantly, researchers must anticipate inclusion strategies, commit to methodological flexibility and person-centred language, and, when possible, include children with disabilities as active participants in the research process.70

Addressing the unique needs of 2SLGBTQIA+ youth in health research demands various ethical and methodological considerations. A predominant systemic barrier is the under-reporting50 or aggregation76 of gender and sexuality categories, undermining a comprehensive understanding of diverse health realities. Sex-diverse and gender-diverse youth often grapple with the fear of being ‘othered’ or criticised for their identity, highlighting the importance of creating inclusive and gender-affirming research environments. To foster respectful and inclusive approaches, research needs to confront the impact of historical and present-day cis-centrism and structural transphobia90 and be reflective of how these impact research processes and, ultimately, health outcomes.

Evidence suggests sexism rooted in the child health research ecosystem.9 62 73 Women can experience harassment, particularly in early career stages. However, they also experience other forms of systemic discrimination, such as negative views of pregnancy, tensions between their public and private lives, difficulties finding work-life balance and the pressure to postpone family decisions. A contributing factor to systemic sexism is the lack of representation of women in leadership positions.75 Although a more representative leadership does not guarantee rapid systemic and cultural change, proper representation seems like a necessary step before changes can occur in the foreseeable future.

In our review, multiple studies substituted gender with sex or used these terms interchangeably. Child health research must be critical to the misuse of these categories as sex refers to biological characteristics while gender encompasses identity and expression—both of which are distinct yet essential determinants of health. As with race, if researchers ignore gender as a social construct, they can miss the mechanisms that drive health inequities and systemic discrimination. Previous research highlights combined barriers for intersecting individuals and communities, such as under-represented women in clinical trials,91 underscoring the importance of integrating intersectional lenses in research design and practice.

Intersectional research has the potential to surpass mere unidimensional analysis of marginalised communities and provide a nuanced understanding of prevalent barriers and health realities. Employing intersectional lenses in research entails considerations in study conceptualisation, participant recruitment, data collection and data analysis.92 The use of intersectional lenses in epidemiological research is limited,93 but emerging statistical methods, such as multilevel analysis of individual heterogeneity and discriminatory accuracy,94 95 are promising tools for advancing intersectional quantitative health research.

Inclusive strategies

Inclusion in the research process has improved in the last decades, largely driven by the adoption of participatory methodologies.96 97 These approaches offer flexible frameworks that allow research teams to determine the level of stakeholder and community engagement, ranging from informing and consulting to deeper collaboration, co-production and empowerment.96 This shift reflects a growing recognition of the importance of equitable knowledge production and the need to reduce power imbalances between researchers and historically marginalised communities. Community-based participatory research has the potential to effectively integrate research and action,98 enhance recruitment capacity, conduct culturally and logistically appropriate research, develop partner(ship) capacity and increase sustainability and system change capacity.99 Approaches such as Patient-Oriented Research have been institutionalised to promote inclusive processes in health research. The Canadian Strategy for Patient‐Oriented Research launched by the Canadian Institutes of Health Research reflects this approach. However, institutionalising such strategies can obscure superficial engagement,100 disregarding the broader structural forces that shape health and participation in healthcare systems.101 Critiques suggest expanding other participatory and critical forms of research100 or shifting from patient to public involvement or community engagement.101

Clinical trials scholars have effectively used socio-ecological models to understand barriers and identify strategies.102 Similarly, we adopted this approach to map existing barriers (figure 4) and potential strategies (figure 5). This framework enables the organisation of barriers and strategies in a manner that facilitates their application in real-world settings.

By contrasting barriers (figure 4) and strategies (figure 5), we make the following suggestions. To improve research processes, barriers at the individual level, such as logistical challenges, could be addressed through methodological flexibility, adequate compensation and logistical support (eg, transportation, childcare). At the interpersonal level, the lack of diverse research teams and the absence of cultural safety could be mitigated by fostering more diverse teams and providing training in EDI, cultural safety and accessibility. Organisational challenges, such as weak community relationships, could benefit from approaches such as participatory methods and university or faculty-wide community-driven research agendas. Finally, at the policy level, issues such as predetermined research agendas, predefined outcomes and short-term funding cycles could be addressed by creating funding streams that support long-term community relationships and community-led prioritisation processes.

Similarly, to improve the research ecosystem, barriers could be addressed through comprehensive revisions to institutional policies and practices. These barriers include work-life imbalances at the individual level, robust reporting mechanisms to address discrimination by peers, supervisors and authorities—particularly during training—at the interpersonal level, and inequitable compensation and advancement at the organisational level. International initiatives, such as the San Francisco Declaration on Research Assessment, have advocated for evaluation practices that recognise the societal impacts of research alongside the generation of knowledge.103 104 Additionally, debiasing committee compositions and adopting deliberative approaches to hiring, promotion, tenure and funding processes could further reduce inequities.105

Collaborating with Indigenous peoples and other historically marginalised communities requires that we consider where and how decisions are made in research institutions.106 The academy must ensure decision-making embeds strong community voice, trust and reciprocity. Models of inclusive governance106 107 could close the equity gap by forging common values, priorities and strategic directions and enshrining diverse and Indigenous communities in research governance. In addition to equity outcomes, the principle nothing about us without us can also drive health innovation outcomes.107

Limitations

Several limitations were identified in this study. First, our search strategy allowed us to investigate the scope of barriers to EDI in child health research in a cost and time-effective fashion. By prioritising breadth over depth, we may have missed publications using language not reflected in the search strategy (eg, ethical concerns or considerations), more rigorous use of controlled vocabulary and subject headings or in other databases. Future reviews could include additional keywords and terms that are proximal to the health realities of specific communities. Additional keywords, such as recruitment, retention, engagement, participation, career advancement, leadership or ethics, could retrieve publications about barriers not reached with the present search strategy. Furthermore, some keywords could be further deconstructed, such as using assent, consent, power, ownership, sovereignty and other terms to inquire about ethical considerations.

Second, we did not include low income as a prioritised community but as an intersecting factor of other social categories. By doing this, we maintained a more focused exploration of specific communities but missed the opportunity to identify and address systemic issues related to poverty and financial hardship.

Last, readers should exercise caution as our search strategy was conceptualised in English using categories used in Canadian research policy.31 Recognising the diverse and context-dependent nature of social categories and identities is crucial for a nuanced understanding of EDI in child health global research. Systemic barriers exist within and across national borders. Child health research endeavours should consider systemic barriers in their contexts. To improve equitable and inclusive child health research, future endeavours must enact EDI policies and processes within their teams and enhance participation from diverse human experiences, conditions, locations and developmental pathways, including fostering collaboration with local communities and researchers from underrepresented geographies.

Our review also has several strengths. First, to our knowledge, this is the first scoping review examining systemic barriers to equity, diversity and inclusion in child health research across multiple marginalised communities and their intersections. As such, it can assist researchers in identifying potential strategies to foster equitable and inclusive research. Second, we identified an unequal distribution of publications across communities, underscoring both the focus and gaps in academic discussions. The absence of literature on specific issues may reflect under-reporting, a lack of research focus or systemic biases within the research ecosystem. Third, we adopted a systemic approach, scoping and mapping barriers across multiple levels of the socio-ecological model throughout the research process and broader research ecosystem. This systemic perspective can facilitate the development of comprehensive strategies that address multiple and interconnected barriers simultaneously, creating opportunities for more effective and sustainable solutions. Finally, while our study aligns with Canadian research policies on EDI, it also provides globally relevant insights, particularly regarding the need for disaggregated data, intersectional research methodologies and structural reforms to advance inclusivity in child health research.