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The Structural and Intercultural Competence for Epidemiological Studies (SICES) guidelines: a 22-item checklist
  1. Angel Martinez-Hernaez1,
  2. Deborah Bekele1,
  3. Carla Sabariego2,3,
  4. Ángel Rodríguez-Laso4,
  5. Ellen Vorstenbosch5,6,
  6. Laura Alejandra Rico-Uribe6,7,
  7. José Luis Ayuso-Mateos6,7,
  8. Albert Sánchez-Niubò5,6,
  9. Leocadio Rodríguez-Mañas4,8,
  10. Josep Maria Haro5,6
  1. 1Medical Anthropology Research Center, Rovira i Virgili University, Tarragona, Spain
  2. 2Center for Rehabilitation in Global Health Systems, WHO Collaborating Center, University of Lucerne, Lucerne, Switzerland
  3. 3Swiss Paraplegic Research, Swiss Paraplegics Foundation, Nottwil, Switzerland
  4. 4CIBERFES, CIBER Institute of Health Carlos III, Madrid, Spain
  5. 5Teaching, Research and Innovation Unit, Sant Joan de Deu Health Park, Sant Boi de Llobregat, Spain
  6. 6CIBERSAM, CIBER Institute of Health Carlos III, Madrid, Spain
  7. 7Department of Psychiatry, Autonomous University of Madrid, Madrid, Spain
  8. 8Geriatrics Department, Getafe University Hospital, Getafe, Spain
  1. Correspondence to Dr Angel Martinez-Hernaez; angel.martinez{at}urv.cat

Abstract

Structural and intercultural competence approaches have been widely applied to fields such as medical training, healthcare practice, healthcare policies and health promotion. Nevertheless, their systematic implementation in epidemiological research is absent. Based on a scoping review and a qualitative analysis, in this article we propose a checklist to assess cultural and structural competence in epidemiological research: the Structural and Intercultural Competence for Epidemiological Studies guidelines. These guidelines are organised as a checklist of 22 items and consider four dimensions of competence (awareness and reflexivity, cultural and structural validation, cultural and structural sensitivity, and cultural and structural representativeness), which are applied to the different stages of epidemiological research: (1) research team building and research questions; (2) study design, participant recruitment, data collection and data analysis; and (3) dissemination. These are the first guidelines addressing structural and cultural competence in epidemiological inquiry.

  • other diagnostic or tool
  • epidemiology
  • review
  • public health
  • other study design

Data availability statement

All data relevant to the study are included in the article.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjgh-2021-005237

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    Summary box

    • Structural and cultural competence approaches have been widely applied to the health fields, but no systematic effort has been made to apply them to the epidemiological inquiry.

    • Organised as a 22-item checklist, the Structural and Intercultural Competence for Epidemiological Studies (SICES) guidelines are the first systematic attempt to bring these approaches into epidemiological research.

    • SICES provides new clues for reducing bias, interpreting the findings, and favours the commitment of populations to research results and their dissemination.

    • SICES encourages a more horizontal and dialogical relationship between researchers and the public.

    • SICES promotes the representativeness of minority groups and excluded population in epidemiological studies.

    The challenge of intercultural and structural competence in epidemiological research

    In recent decades, the intercultural competence approach and its sisters, such as cultural competence, cross-cultural competence and cultural humility, among others, have been widely applied to healthcare, healthcare policies and especially to training programmes for health professionals.1–6 Making policies and clinical practices more sensitive and effective in dealing with social diversity has become a purpose of healthcare systems of many countries, regardless of their policy models, as well as of international health agencies.7 In a globalised world, medical services and policies must face the challenge of multiculturalism.8 Everyday clinical practice presents a landscape that is expressed by patients with different demands, ethnic affiliations, languages and idioms of distress, as well as problems of exclusion and racism, experiences of migration, displacement and torture, and other difficulties arising from globalisation and its disruptions.9 10 In this context, culture matters for balancing the dominant cultural view of the healthcare agenda, for dealing with local worlds and popular medical systems, for promoting social participation in health, as well as for designing community-centred health initiatives, among many other fields.11

    Following Fleckman et al,4 in this article we prefer the term intercultural competence rather than the more frequent cultural competence. The cultural competence notion can suggest the possibility of substantial or complete knowledge of a given culture and an emphasis on the culture of the patient, user or participant. Two implicit assumptions may be misleading, since (1) it is not possible to know a culture in its entirety and (2) any competence in this domain requires health professionals’ reflexivity regarding their cultural backgrounds, including the culture of their expert system. Alternatively, the intercultural competence model invites an understanding of competence as a movement from the personal to the interpersonal level of interactions.4 Intercultural competence values the impact of cultural factors on both lay participants and health professionals and can be defined, paraphrasing Fleckman et al,4 as ‘the ability to manage effectively and appropriately in intercultural situations on the basis of one’s own intercultural knowledge, skills and attitudes.’

    Recent initiatives have sought to broaden the spectrum of intercultural competence to integrate social and economic dimensions, and issues such as structural violence and the naturalisation of inequality.12–16 Cultural diversity explains only part of the impact of social life on health. It is necessary to complement diversity with another ‘usual suspect’: inequality and its structural vulnerabilities. This is the case of some attempts to rethink cultural competence, such as Kirmayer’s,17 as well as of the so-called ‘structural competence’ that, according to some authors, attempts to rescue ‘five decades’ of studies on the social determinants of health.12 Following Metzl and Petty,18 we can define structural competence as a framework for addressing ‘health-related social justice issues that emphasises diagnostic recognition of economic and political conditions producing and racialising inequalities in health.’

    Structural competence is closely related to other approaches such as the Critical Race Theory,19 which discusses structural racism and its impact in previous research studies and medical interventions in ethnic and sociocultural minorities. Structural vulnerabilities can be assessed through historical medical memories of the marginalised communities. The community’s trust in research and medicine and consequently their eagerness to participate, or not, in epidemiological studies is a main aspect to be addressed due to its impact on recruitment and thereby bias.

    Structural competence includes some cultural dimensions, so it might seem that the proposal to maintain the dual structural and intercultural components may be redundant. Nevertheless, the focus of structural competence is mainly on how broad social systems and historical processes generate structural vulnerabilities and health inequalities. Bourgois et al12 define structural competence as ‘the ability for health professionals to recognise and respond with self-reflective humility and community engagement to the ways negative health outcomes and lifestyle practices are shaped by larger socioeconomic, cultural, political and economic forces.’ Culture is integrated in this definition as a ‘larger force,’ and implicitly in the idea of self-reflective humility and lifestyle practices. But culture as a factor is not widely included in this definition. Some elements are missing or receive meagre attention, especially the cultural and linguistic validation of tools and services and the ‘intercultural’ dimension, in the sense of the capacity of clinicians, researchers and policymakers to oscillate themselves ‘between’ a known culture and a culture to be known. We consider that a better balance between recognition of cultural diversity and awareness of inequality makes it possible to strengthen the analysis of both dimensions, since structural vulnerabilities take unique forms in specific cultural contexts. For example, ‘poverty’ takes on a different meaning in a culture where social status is not based on material wealth.17

    The integration of structural and intercultural competencies into epidemiological study design is a real challenge not just for epidemiologists, but also for social scientists working on health issues, such as medical anthropologists. A look at the Lancet Commission on Culture and Health report is illuminating in this regard.11 In that detailed text, the word ‘epidemiology’ and its variants (ie, ‘epidemiological’) is used just twice, as are other close terms such as ‘cohort’. The relative omission of epidemiology in this text is symptomatic for us, especially considering its comprehensive and integrative purpose. In fact, no systematic effort has been made so far to apply the intercultural or structural competence perspectives to the epidemiological field.

    One of the reasons for this gap is undoubtedly the difficulty of integrating social and cultural factors into epidemiological inquiry. This difficulty arises from at least two challenges. The first is common to healthcare, as it lies in the very conceptualisation of health problems as realities dependent on social life.11 The second is more specific to epidemiological research and concerns the design and the use of tools and methods that are sensitive not just to cultural and social aspects, but also to political and structural vulnerabilities.

    In relation to the first challenge, it is recognised that social and cultural factors overlap and there is no clear distinction between them. Generally, it is considered that culture refers to the ideational dimensions of social life: perceptions, symbolic representations, collective identities, religious customs, values, among other phenomena that often resist quantification.20 For their part, social factors have become more associated with the system of social organisation, status and classes, with social mobility, poverty, inequality and policies.21 However, cultural and social factors are related to each other in a holistic and interdependent mode in such a way that their isolation as variables can be artificial. For example, a cultural variable such as the process of acculturation of ethnic minorities is closely related to access to education and to upward social mobility and thus to social status.

    But the more general problem arises concerning the second challenge: the application of structural and intercultural competence to the epidemiological design. The problem of cultural validation of some measurement instruments such as scales or diagnostic interviews is well known in the literature,22 23 but it is not the only issue. A competence approach in this matter presupposes a self-reflective practice on the researcher’s own cultural milieu, including biomedical culture. Table 1 includes some basic definitions that we have adapted to epidemiological inquiry to assist in this reflexivity process.

    View this table:
    Table 1

    Basic definitions

    Certainly, in epidemiology there are different paradigms that focus on issues close to those considered in intercultural and structural competence. This would be the case of social epidemiology23 and sociocultural epidemiology,24 participatory epidemiology25 or critical epidemiology,26 in which we could even include the proposal of an ‘epidemiology without numbers’27 that takes the collective production of health as its horizon. However, these paradigms have not explicitly or clearly focused on the competence of researchers as a set of knowledge, skills and attitudes that can improve research design. Here we think that intercultural and structural competence should not be considered as a theoretical option, but as a transversal approach, in the same way as research ethics or the Responsible Research and Innovation (RRI) approach.28 The impact of local knowledge, difficulties in communicating with participants, or social and cultural biases arising from data collection,29 30 among many other factors, are challenges in epidemiological research that an intercultural and structural competence can help to address.

    This article aims to develop some guidelines that can improve the structural and intercultural competence of epidemiological studies. When we speak of competence, we are referring to a horizon or an aspiration and not so much to a goal that can be achieved in its entirety. In this sense, this is not a proposal of maximums, but a first step that can help to strengthen the structural and intercultural competence of epidemiological studies.

    Searching for references

    We conducted a scoping review to identify in the literature instruments, tools, and guidelines regarding structural and cultural competence in epidemiology and, in a second phase, in other health fields. In order to identify the available literature, we conducted several searches in the National Library of Medicine (PubMed) starting in April 2020; updated in September 2020. The searches included publications in any language with the following keyword search combinations (no Medical Subject Headings terms) limited to title and abstract:

    • First search: (“structural competence” OR “structural competency”) AND (epidemiolog* OR “epidemiological procedures” OR “epidemiological design” OR “epidemiological methods”).

    • Second search: (“cultural competence” OR “cultural competency OR intercultural competence OR intercultural competency OR cross-cultural competence OR cross-cultural competency) AND (epidemiolog* OR epidemiological procedures OR epidemiological design OR epidemiological methods).

    Additionally, we searched in the Cochrane Database of Systematic Reviews using the same terms. No items met the sole inclusion criterion of being a tool, instrument, or guidelines for the application of structural and/or cultural competence in the design and/or implementation of epidemiological research.

    Due to this gap in the literature, we proceeded in a second phase to review the instruments, tools and guidelines used in other fields, such as health professional training and education, healthcare, health promotion and healthcare policies. In this case, we used the following search strategies:

    • Third search: (“structural competence” OR “structural competency”) AND (“guideline” OR “tool” OR “instrument”).

    • Fourth search: (“cultural competence” OR “cultural competency” OR “intercultural competence” OR “intercultural competency” OR “cross-cultural competence” OR “cross-cultural competency”) AND (“guideline” OR “tool” OR “instrument”).

    Only publications which reported tools, instruments or guidelines regarding structural and cultural competence were eligible for inclusion. Uncertainties about whether the publications met the inclusion criteria were resolved through discussion among the researchers. Additional references were added through cross-referencing.

    Two researchers (DB and AM-H) conducted full-text reviews of the publications and independently analysed the most salient domains of the selected items using a hermeneutic and qualitative content methodology. The obtained domains were crossed with the tasks involved in epidemiological research. The examination of this intersection allowed us to propose a checklist of items that should be considered when designing, carrying out and analysing data in epidemiological studies with a structural and intercultural perspective. Finally, the different items were elaborated on the basis of a consensus exercise among all authors, which included both scholars with expertise in intercultural and structural competence and those with experience in designing and conducting epidemiological research.

    Evaluating existing tools

    The first and second searches yielded 55 articles (42 through PubMed and 13 identified through Cochrane Database of Systematic Reviews). No items met the inclusion criterion of being a tool, instrument or guidelines. The two articles closest to our goal were on the application of intercultural competence to public health,4 especially to the training of professionals, and on integrating epidemiological and ethnographic methodologies.31 The third and fourth searches yielded a total of 427 articles (11 and 416, respectively), and 10 documents were added through cross-referencing. After eliminating duplicates (two items), the remaining 435 articles were screened, of which 404 were excluded because they did not report on tools, instruments or guidelines, and 10 because they were a redundant use of a tool. A total of 21 tools were identified (figure 1).

    Figure 1
    Figure 1

    Flow diagram.

    Table 2 shows the six domains that are covered by these tools and instruments. These six domains were reduced to four by merging both cultural and structural sensitivity, and cultural and structural representativeness.

    View this table:
    Table 2

    Evaluating existing tools

    Domain 1: cultural awareness and reflexivity

    In clinical care, this domain assesses whether health professionals are reflexively analysing how their cultural, ethnic, gender and social backgrounds, including the culture of their expert system, interact with the cultural background of patients and families and may affect clinical communication. In the field of health education and promotion, it is often aimed at raising awareness of the different perceptions among experts and lay systems. In this domain, the issue that is considered critical is an intangible attribute such as reflexivity. In our sample of 21 tools, this issue was clearly present in 19 of them. In one case,12 it was indirectly addressed through the idea of cultural humility. Applied to epidemiological research, this domain can be defined as the capacity of the research team to reflexively analyse how their cultural, ethnic, social and expert background interact with those of the participants, and can affect research questions, design, recruitment, data collection, data analysis and dissemination activities.

    Domain 2: cultural and linguistic validation

    This domain refers to the cultural and linguistic adaptation of instruments, tools, questionnaires, interviews, informed consents, health advice, prescriptions, and various interactions between health professionals or experts and patients and lay systems by extension. It also usually includes the adjustment of health services to the cultural and linguistic background of the users, for example, through the translation of information or the adaptation of protocols, settings and schedules. Among the 21 tools analysed, this domain was present in 18 of them. In the field of epidemiological research, this domain can be defined as the linguistic and cultural adaptation of instruments, tools, informed consents, and participant information sheets, questionnaires, interactions between researchers and participants, and dissemination outputs addressed to the participants.

    Domain 3: sensitivity to cultural diversity and structural vulnerabilities

    The idea of merging sensitivity to cultural diversities and to social inequalities responds here to the already mentioned complementarity between these perspectives. Cultural sensitivity refers to motivation and curiosity for diverse cultural realities, whether they come from patients, participants in a health promotion programme, users of a service, beneficiaries of a health policy or populations under study. Cultural knowledge can be understood as a result of cultural sensitivity. Similar reasoning can be applied to the case of sensitivity to structural vulnerabilities and social inequalities, and their correlates in knowledge on health disparities. Among the tools analysed, most contemplated some form of cultural sensitivity (19 clearly and 1 indirectly) or structural sensitivity (18). In the field of epidemiological research, this domain can be defined as the incorporation of variables and relevant information on cultural diversity and structural vulnerabilities of the groups under study in any of the phases of epidemiological research.

    Domain 4: representativeness of minority groups and excluded populations

    As in the previous domain, in this one we have merged the representativeness of minority groups and excluded populations, which may overlap since diversity and inequality often run together. Generally, this domain has to do with the inclusion of disadvantaged and hidden groups, especially in health policies and services, with the objectives of improving the health of these groups, making their unequal situation visible, favouring their empowerment and health literacy, and recognising their citizenship rights. In our analysis, we observed that this was the domain least present, as it was only included directly in half of the tools. Nevertheless, its inclusion can be considered strategic because of its capacity for social transformation of the most vulnerable populations. In the context of epidemiological research, this domain can be defined as the ability to favour the representativeness of minority groups and excluded populations throughout the different phases of the study, such as the composition of the research team, the selection of the sample, and the development of dissemination and RRI activities.

    The Structural and Intercultural Competence for Epidemiological Studies guidelines

    The four reported domains can be related to main stages of epidemiological research, such as (1) research team building and research questions; (2) study design, participant recruitment, data collection and data analysis; and (3) dissemination. Table 3 reveals the intersection between the cultural and structural domains and the epidemiological stages and a series of resulting items. Most of them relate to pre-existing instruments that account for intercultural and/or structural competence in other health fields. Other elements were obtained indirectly and were the result of a consensus among the different authors. One of them, item 14, has been expanded thanks to the valuable contribution of one of this article’s reviewers, who recommended including a second specific question already existing in the Bridging Research Integrity and Global Health Epidemiology (BRIDGE) guidelines.32 33 The result is a checklist of 22 items (see table 4) in which the items have been converted into questions that guide the researchers in their self-assessment.

    View this table:
    Table 3

    Structural and intercultural domains and criteria

    View this table:
    Table 4

    The Structural and Intercultural Competence for Epidemiological Studies guidelines

    Conclusion

    To our knowledge, the Structural and Intercultural Competence for Epidemiological Studies (SICES) checklist is the first systematic attempt to bring the structural and intercultural competence into epidemiological research. Based on the selection and adaptation of a series of criteria developed for other health fields, we have proposed a checklist that should be understood as a starting point rather than as a destination. The methodology we followed was the same as the one used for the elaboration of the Consolidated Criteria for Reporting Qualitative Research34: data extraction and analysis of previous instruments and checklists, in this case on intercultural and structural competence. To this process, we have added a dimension of internal consensus, as the authors of this paper include both medical anthropologists specialising in intercultural and structural competence and epidemiologists with experience in designing and conducting epidemiological research. In this sense, and if we follow the Moher et al’s guidance for developers of health research reporting guidelines,35 SICES would be better defined as working guidelines, or even a guidance, whose purpose is to help promote a common language between epidemiology and structural and intercultural competence. SICES complements well with other guidelines and standards focused on related issues, such as the BRIDGE guidelines.

    SICES arranges a set of criteria that can be useful not just for strengthening the structural and intercultural competence, but also the self-reflection and self-evaluation of research teams. Reflexivity is an intangible domain that has to do with attitudes and predispositions and has an influence on the quality of research. For example, self-reflection on cultural and social gaps between the research team and the populations under study can provide new clues for reducing bias and interpreting the findings, favour the commitment of these populations to research results and their dissemination, and strengthen health literacy and empowerment among the most vulnerable groups. The impact of embracing a structural and intercultural competence perspective has different faces, but they all encourage a more dialogical relationship between researchers and the public. This is the purpose of these guidelines. We invite readers to improve this checklist with comments, critiques and suggestions.

    Data availability statement

    All data relevant to the study are included in the article.

    Acknowledgments

    We would like to thank the two anonymous reviewers for their excellent comments, criticisms and suggestions on an earlier version of this article.

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    Footnotes

    • Handling editor Seye Abimbola

    • Contributors AM-H and DB conceived the idea, designed the study and wrote the manuscript. DB and AM-H developed the review, the data extraction and analysis, and both verified the underlying data. AR-L, AS-N, CS, EV, JLA-M, JMH, LAR-U and LR-M reviewed the various drafts of the article. All authors discussed the results and contributed to the final manuscript.

    • Funding This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement no 825884 (SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders, SYNCHROS). AM-H acknowledges the financial support from Institut Català de la Recerca i Estudis Avançats (ICREA) under the ICREA Academia Award.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.