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Epistemic Injustice

A Philosophical Analysis of Women's Reproductive Health Care in a Somali-American Community

Narruhn, Robin PhD, MN, RN; Clark, Terri PhD, CNM, ARNP, RN, FACNM

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doi: 10.1097/ANS.0000000000000283
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Abstract

EPISTEMOLOGY is the study of knowing about knowing. For example, what counts as knowing? Who decides? Epistemology is the philosophical field that studies such questions as: How do we know something? What counts as knowledge?1 The related philosophical field of ethics analyzes similar questions: What is just? What is right? What is good? In our quotidian ways of thinking, ethics and epistemology mutually shape one another: How do we know what is just? Who gets to decide, and on what basis are actions considered to be consistent with our notion of justice?

STRUCTURAL COMPETENCY

The theory of structural competency2,3 provides a new way of looking at the structural factors that contribute to health disparities. Structural competency is defined by Metzl and Hansen as, “attention to forces that influence health outcomes at levels above individual interactions. It reviews existing structural approaches to stigma and health inequalities developed outside of medicine and proposes changes to U.S. medical education that will infuse clinical training with a structural focus.”3(p126) Using this lens facilitates our recognition and understanding of the factors contributing to epistemic injustice.

EPISTEMIC INJUSTICE

This article examines the concept of “epistemic injustice” through specific, naturally occurring health care–related interactions. We use ostensive definition; that is, the meaning becomes clear as we point to specific examples of things to which the definition applies. We argue that the both patients and communities in these vignettes may be treated unethically, and the health care workers, health educators mentioned in the case later, for the most part, have no idea that they are behaving unethically. In contrast, the patients clearly know that the care they received was unjust and demeaning.

Statement of Significance

What is known or assumed to be true about this topic:

The problem of birth outcome disparities has proven intractable for many communities of color in the United States. Despite a growing scholarly literature detailing these disparities and evaluating many new practice and policy interventions, little seems to improve these outcomes.

What this article adds:

This article interrogates the philosophical foundations of health care services delivered to vulnerable populations. We argue that deep questions of who and what counts as having knowledge, epistemic injustice, affects the quality of care health care outcomes. We use the example of a sentinel population, Somali women giving birth in the United States, to describe this phenomenon. We further expand the discussion to gaps in structural competency and professional education, which contribute to inevitable health care system failures for people of nondominant cultures. We conclude with recommendations for further scholarly investigations, educational and health system design interventions.

“Epistemic injustice” occurs “when someone is wronged in their capacity as knower.”4 This article provides an illustration of these higher-level concepts through particular examples of how epistemic injustice affects the health care of a sentinel population, Somali women in the United States. We expand the focus from this particular vulnerable group to illustrate the much larger issue of how structural power (ie, socially sanctioned power inherent in an institutional role) can be deployed by health care administrators and providers, however unintentionally, to harm patients and even to adversely affect health outcomes. It is a short step from understanding these theoretical concepts to actually preventing failures in the care of members of many other nonmajority/nondominant or stigmatized groups in the United States. The purpose of this article is to demonstrate that knowledge and recognition of epistemic injustice can be translated into just action to provide ethical health care, even in the most structurally complex social and cultural settings.

The issue of epistemic injustice is not new, especially with respect to women's reproductive health. Concern about knowledge production was initially identified in the reproductive health care setting.5 “Epistemic injustice” is a term coined by Fricker.4 It can be a consequence of an inadequate informed consent process, exaggerated or ideologic risk-based discourse, bias against the knower, or privileging only certain types of knowledge paradigms, specifically that of allopathic medicine. The result is a systematic devaluing of “other ways of knowing” as well as devaluing cultural values other than one's own. Rhoden6(p68) observed that decision-making in the obstetrical realm is complex and contested because the

... almost inevitable nature of consent in obstetrics may mask a number of controversial value judgments regarding the relative importance of the woman's concerns versus the fetus' (ostensive) well-being ... The incipient reallocation of power from patient to physician may affect obstetrical decision-making.6

The health professional's value judgments are obscured, Rhoden6 argues, by such infelicities as: “incomplete information sharing in the consenting process, claims of evidence-based decision-making, lack of patient centered care, withholding information about alternatives, and exaggerated and/or conversely lack of information about risk.” Rhoden6 further posits that

truly shared decision-making in medicine requires that physicians reflect upon and discuss among themselves the underlying influences on their decisions, including psychological motives, professional values and socialization, and that they enter into an open-ended dialogue with patients in which they share their uncertainties.2(p84)

To further complicate matters, the understanding of maternal autonomy can be inadequate7 even when patient-centered care is prioritized.

There are 2 types of epistemic injustice: the first, “testimonial injustice” occurs in a testimonial transaction, when a speaker asserts something as true and “receives a deflated degree of credibility from a hearer” owing to usually unrecognized “prejudice on the hearer's part.”4 The second type of epistemic injustice is “hermeneutical injustice.” Hermeneutics is the study of interpretation, and it makes explicit the theory of how understanding is achieved in particular utterances, discourse, or in understanding texts, for example. Hermeneutical injustice sets the stage for epistemic injustice: when someone is trying to make sense of a social experience but is handicapped by a certain gap in collective understanding, a hermeneutical void whose existence is owing to the relative powerlessness of a social group to which the subject belongs.4 Patients are particularly vulnerable to epistemic injustice because the experience is theirs: they are in fact privy to salient knowledge that those who are not sick (or pregnant) cannot know.8 This has been illustrated by a table of cesarean delivery complications, later. Not all knowledge regarding pregnancy and birth is delivered in a prenatal education class.

CLINICAL CONTEXT

The population of Somali mothers who have arrived in the United States after the diaspora of the early 1990s has experienced difficulties and health outcome inequities while giving birth in Western settings.9,10 It is estimated between 140 000 and 150 000 Somali immigrants relocated to the United States by 2015.11 The Somali diaspora began in the 1990s due to the civil war, unrelenting political unrest, drought, and famine. They fled to many different countries, including many locations in the United States. People from Somalia, like many immigrants, settle in areas previously settled by other Somali immigrants. As a result, there are concentrations of Somali refugees in Minnesota, Atlanta, New York, Washington, District of Columbia, Washington State, California, and Tennessee, for example. Somali culture places a high value on having many children, so Somali families have faced a challenge in the divergences of values around childbirth between themselves and providers.10 In addition, the very fact that these women are survivors of war and famine influences their fertility decisions, which can be either to have fewer or more children. Factors known to influence numbers of children include war, poverty, violence, etc. “Those working with war-affected populations espouse contradictory positions regarding the impact of forced migration on fertility: that fertility rises because of the pressure to replace deceased children and warriors, and that it falls because the stress and uncertainties of refugee life are not conducive to childbearing.”12(p174)

It is not within the realm of this article to do a full literature review, however; there is a significant body of scholarly literature that describes the specific experiences, reproductive inequities, challenges, and perspectives of the Somali women receiving health care in Western allopathic medical systems.9–10,13–16 The research indicates health care providers are challenged when they try to provide reproductive care that is patient centered and culturally safe for this population.9,10,14–23 For example, when women from Somalia decline interventions prescribed by health care providers such as induction of labor or cesarean delivery, their responses give rise to challenges for culturally unaware providers, which can result in inequitable and/or unjust outcomes. We argue that epistemic injustice of both the testimonial and hermeneutic types is factors that influence the perspectives, interactions, and outcomes of Somali women.

Testimonial injustice

Testimonial injustice is the idea that knowledge is valued only when produced by those who have the preponderance of power4 and this knowledge, and only this, is considered to be “authoritative.” Who controls the perception of what counts as a problem in the first place? It is often not the patient—especially if they have low social capital. Personnel in the United States are considered authoritative when they speak with the voice of allopathic medicine: that is, when they diagnose and treat disease using the methods of empirical science. The problem that we are describing is that the allopathic care model does not begin to address the worldview and health concerns of Somali women, families, or communities. The shortfall of the allopathic model has been described in the case of health disparities from the public domain.

CASE 1: SOMALI-AMERICAN BIRTH OUTCOME EPIDEMIOLOGY

In 2004, the Somali community of Seattle, Washington, voiced their widespread belief that there was a significant inequity in the number of cesarean deliveries in their community when compared with the outcomes of their non-Somali counterparts.23 Their claim that the number of cesarean births to Somali American mothers was inordinately high was initially discounted by many in the health care institutions that provided reproductive services to women from Somalia. Eventually their concerns were actually investigated, and it was, in fact, discovered (by way of an epidemiologic study—one medically legitimized, allopathic, way of knowing) through conducting an evidence-based study13 that the community's claims were accurate. A retrospective review of Washington state birth certificates, between 1993 and 2001, compared singleton deliveries between Somali women (n = 579) and pregnancy outcomes in black (n = 2384) and white (n = 2435) women and found nulliparous Somali women were more likely to have a cesarean delivery than black or white control women (odds ratio, 1.6, 95% confidence interval, 1.1-2.3, and odds ratio, 2.0, 95% confidence interval, 1.4-2.8), respectively.13 In addition, Somali women were 9 times more likely to have pregnancies lasting past 42 weeks, 4 times more likely to have oligohydramnios. Newborns of women from Somalia were more likely to have prolonged hospitalization, lower 5-minute Apgar scores, assisted ventilation, and meconium aspiration.13 Members of the Somali community were factually correct in their claim of higher cesareans section rates, and following the logic of Fricker,4 they had been “wronged in their capacity as knowers.” We assert that this is an example of how those in authority in the Seattle health care community systematically and unconsciously devalued “other ways of knowing” and cultural values other than their own.

As described earlier, testimonial epistemic injustice has its roots in the ostensive “knowers” unacknowledged prejudicial view of others who do not have authority, in this case the Somali mothers. A prejudiced view by the authoritative (ie, allopathic and scientific) “knower” serves as the defining perception for most others who have no independent knowledge of the situation, nor any particular reason to question this received “expert” definition of the situation.

To provide an explanation for the observed birth outcome disparities in Somali women, rather than automatically defaulting to “cultural features,” we can examine the possible reasons using an intersectional lens. Intersectionality is a theory that has to do with how systems of oppression are mutually constituted and how they work together to produce inequality.24 In the case study under intersectionality, notice the power differentials between the Somali women and their care providers, and simultaneously, consider some of the many intersections between the dominant social structure and the lack of opportunity for immigrant community members.

Poor immigrant health is often attributed to cultural beliefs and practices. What would happen if, rather than reflexively attributing poor immigrant health to counterproductive cultural beliefs and practices, more attention were paid to the impact of social structural and opportunity factors that drive immigrant health disparities?25 Viruell-Fuentes et al25(p2103) recommend an intersectional approach to disparity research citing the need for a shift from “individual-level cultural explanations to research that provides a broader, more in-depth analysis of racism (including unconscious racial bias) as a structural factor that intersects with other dimensions of inequality, such as gender and class, to impact immigrant health outcomes.” Ethnicity and cultural beliefs are not the only factors that affect patient culture; class, education, gender, sexual orientation, religion, and personal life context are important to consider in the patient's life world.26 We are arguing that structural factors in the power dynamic rather than cultural factors of Somalis contribute to these health disparities. The concept of structural competency is relevant here. The structure of decision-making power in the usual US birth setting gives allopathic providers the authority—they are counted as knowers—and simultaneously the voice of patients and their advocates is discounted as uninformed. Compassion, open-ended communication, and respect are critically important in the provider-patient relationship,26 but they are not sufficient to overcome the systemic health system bias against “nonscientific” preferences.

Intersectionality

If one considers the many intersectional ties, that a traditional Somali-American woman brings to her health care encounters, it is easy to see how her perspective of the situation is routinely and systematically diminished by those with socially sanctioned epistemic authority to define her and control her care. As noted earlier, Crenshaw's24 theory of intersectionality studies how systems of oppression are mutually constituted and work together to produce inequality; in other words, multiple categories of difference work together to produce inequities. Normalizing one view over another tends to occur when there are differences in power between 2 groups. Using an intersectional lens,24 it is easy to see that there are many ways the power dynamics could be loaded against a Somali mother: she is a woman in a patriarchal society (Somali or Western); she is an immigrant whose first language, religion, mode of dress, and culture are not only unknown and uncommon, but often unwelcomed by many already living in the United States or Europe. The Somali woman is ordinarily brown-skinned (in dominant white-skinned Western populations); she is Muslim (in dominant Christian societies); she likely wears a headscarf (in a society where such religious expression may be viewed with suspicion); and finally, she may not be formally educated (in a Western country where higher education is required for health care providers). This is certainly not to say that Somali women are without individual agency and resilience. Somali women often are incredibly resilient—it is likely they would not have survived to settle in the United States if they were not resilient. They often exercise their agency when they perceive a threat to their well-being or that of their family. Often the only way they have of expressing their views and preferences is by declining aspects of clinical care they decide are culturally unsafe.

Examining possible categories of intersectionality is illuminating although it risks reducing individuals to mere instantiations of categories. Contrasting categories of intersection risks essentializing and can be polarizing, nevertheless an intersectional lens can be illuminating. In contrast to many refugees from Somalia, health care providers tend to exercise the preponderance of power in the health care setting. Simplistic notions of culture being lived at the individual level are inadequate to fully explain either individual or collective community inequities. Consider the intersectional categories between health care providers and Somali mothers7 (Table 1).

Table 1
Table 1:
Intersectional Categories of Health Care Providers and Somali Mothers

Somali immigrant community values, like those of any community, vary widely among individuals. However, the majority of women from Somalia tend to value knowledge that is contextualized, holistic, and faith driven. Stated another way, they have a contextualized, holistic, and faith-driven epistemology.9

Physiologic birth in a “technological and interventionist” setting

Human birth can be considered a medical event or a natural, family-centered event. Physiologic birth is defined as “powered by the innate human capacity of the woman and fetus.”27 Because most pregnancies are actually normal, physiologic birth is more likely to be safe and healthy when there are no routine, unnecessary, interventions, which disrupt normal physiologic processes. Despite this indisputable fact, most conventional American women are acculturated to expect a risk-oriented discourse in obstetrics, and to trust a normative “technological and interventionist approach to birth.”28 The content of formal “Childbirth Education” programs has been discussed in Case 2 to illustrate one aspect of how women are socialized to be compliant consumers in the 21st-century technologic-interventionist system of giving birth in the United States.29

Adaptive acceptance

In contrast to expecting a medically supervised birth, many Somali mothers are not socialized to being told what to do by medical professionals, for better or for worse. In many cases, they have given birth without any support, and unfortunately, they may be all-too familiar with poor birth outcomes. Often preventive health care was not routinely available in Somalia, and when medical interventions were actually indicated, the capacity to intervene was not available at all.30 Because of this historic experience of reproductive health care disparities, Somali mothers may be less influenced by the threat of any given perinatal loss. Their unfortunate familiarity with high infant and maternal mortality rates in Somalia may result in adaptive acceptance to whatever happens at any particular birth. In addition, many Somali-American women choose to observe religious authority, as expressed by the oft-heard concept of Inshallah (God Willing).

To summarize, a case is being made here that a Somali woman may decide that medical interference in her situation is not warranted, no matter what anyone in blue scrubs or a white coat tells her and her family to do. The women's considered choice may be to accept the unfolding events in her birth, and to choose to decline intervention, even if that intervention is represented as “needed to save the baby's life.” This patient attitude of acceptance may be antithetical to the tenets of modern medicine, but in the United States today, every patient's choices about their own care must be acknowledged, respected, and followed by their health care providers. Both legal and ethical tenets concur on this precept.

It is clear that the normative practices in health care providers must become aligned with respecting patient choice per the American Congress of Obstetricians and Gynecologists.31 Provider disagreement with outcomes is expected when patients make their own choices. Providers do not have to agree with a patient's decisions, but no matter what they think they know—it is indisputable the providers have neither the epistemological nor the ethical standing to override any competent adult's choices about what happens to their own bodies, even when the competent adult is a pregnant woman. If this seems to be an extreme case, in On Liberty (1859) John Stuart Mill argued that “unless the reasons are good for an extreme case, they are not good for any case.”32 If we have a health care system that offers adults autonomy in decisions about their own care, then we have a system that offers Somali women autonomy to make decisions about their own care, even when health care providers do not agree with that decision.

CASE 2: CHILDBIRTH EDUCATION AND SOMALI-AMERICAN REPRODUCTIVE HEALTH CARE

The Code of Ethics for Childbirth Educators states that childbirth educators should promote normal physiologic birth.33 In contrast to following these stated professional goals and precepts, it is the case that in many, but not all hospital-based childbirth education classes, pregnant women are being acculturated to understand their role as consumers and to expect particular hospital routines, usual practices, and policies. The women and their partners attending childbirth education classes are groomed to fit smoothly into hospital routines, even when those routine interventions are known to promote worse perinatal outcomes overall. For example, families are often taught to expect such counterproductive practices in labor as routine electronic fetal monitoring, routine epidural anesthesia, and even cesarean births for nonmedical reasons, such as scheduling convenience. For example, they are told such things as “We want you to come into the hospital early in labor, we will take care of you,” “Most women cannot give birth without an epidural, there is no reason to suffer,” or “We have to put everyone on an electronic fetal monitor because it is safest.” None of these routine practices are justified by evidence that they improve birth outcomes; in fact, it is known that they make them worse. Nevertheless, women are subtly dissuaded from using their autonomy and their inherent ability to give birth should be valued and respected by reproductive health professionals.28

It should be noted here that this model of care has resulted in the United States ranking 46th in quality of perinatal outcomes of the countries in the world.34 In other words, the US system of high-tech, low-touch, nonphysiologic system of routinized medical birth management results in substantially worse perinatal outcomes overall when compared with the women of Korea, Poland, Greece, and Slovenia, for example. How ironic that as the outcomes of US obstetrical care seem to be getting worse each year, the focus of hospital-based childbirth education is to promote consumer buy-in to even counterproductive hospital care routines. Informed consent is a critical component of ethical care of childbearing women and families but, through the mechanism of childbirth “education” classes, the information presented can end up being distorted in ways that subvert and undermine the meaning of giving consent.

The professional discourse of medicine and obstetrics has more social authority than do the preferences of a given Somali woman regarding her own birth because US society trusts in the technology and science upon which obstetrics ostensively claims to base its diagnoses and treatments.35 The naturally occurring discourse of giving information about medical care, and requesting patient consent, reveals hints, suggestions, and even threats of poor outcomes to mother or child if the mother does not acquiesce to the assessments and opinions of those who exercise medical authority. Complicating the process of informed consent is the notion that patient-centered care requires informed consent that is understood by the patient.36 The patient should have the nexus of control in decision-making.

Providers may have the presumption of social authority, but they do not have any power to act without a patient's accurately informed consent. If providers act against a patient's preference, they can commit assault.31 Likewise the Association of Women's Health, Obstetric and Neonatal Nurses endorses patient-centered care, shared decision-making and states, “decisions about interventions should incorporate the woman's personal values and preferences and should be made only after she has had enough information to make an informed choice in partnership with her care team.”37(p152)

CASE 3: ROUTINE INTERVENTIONS AND CESAREAN DELIVERY COMPLICATIONS OF SOMALI-AMERICAN BIRTH OUTCOMES

The concept of physiologic human birth is that it is a natural event that emerges through the unity of mind and body.38 In the health care system, that unity can be marginalized, belittled, and/or silenced. The moment of epistemic injustice—specifically of testimonial injustice—occurs when women's ways of knowing and knowledge are ipso facto marginalized, belittled, and/or silenced by their health care providers. Then comes the cascade of feared obstetrical risks, which are cited to justify the routine interventions, even when they do not. If and when the full expression of medical authority and technical interventions still results in an adverse outcome, as statistical outcomes tell us it must, the ex-post-facto, self-justifying explanation becomes that “the problems were unavoidable.” No one is told that their adverse outcome could have been predicted and was possibly an iatrogenic consequence of the routine use of birth technology in physiologic birth. The resulting worse outcomes ironically justify their own iatrogenic cause. The oracular medical prophecy of birth being risky is fulfilled and the medical model remains authoritative while women's embodied knowledge is devalued.

Jordan's5 notion of authoritative knowledge points out

when equally and legitimate parallel knowledge systems exist ... people move easily between them using them sequentially or in parallel fashion for particular purposes. But frequently one knowledge gains ascendance and legitimacy. A consequence of legitimization of one kind of knowing as authoritative is the devaluation often the dismissal of other ways of knowing. Those who espouse alternative knowledge systems then tend to be seen as backward, ignorant, and naïve, or worse, simply as trouble makers.”5(p56)

The result is that women end up with little agency in decision-making38; in this example, they have little agency in making decisions about their own birth experiences.

Hermeneutical injustice occurs when a gap in collective interpretive resources puts someone at an unfair disadvantage when it comes to making sense of their social experiences. Many women are reliant on the medical expertise of reproductive health care providers. Hermeneutical injustice is a result of the way in which information is, strictly speaking, only partially shared, and that can make any occurrence unjust.

We recall the way risk discourse is used in obstetrics contrasts greatly with the concepts of promoting physiologic birth and with the notion of Inshallah (“God willing”). Instead of fully disclosing the attendant risks of many routine obstetrical interventions and sharing the information that the probability of a normal, spontaneous vaginal delivery may, in fact, be imperiled by the nonjudicious use of routine technology, the providers represent that “allowing” physiologic birth would be the risky course. Note that very choice of words, “allowing labor to proceed” as if birth needed medical permission to occur. It would be as if the ordinary power to give birth were not located in the woman, but in the practices of medicine itself. This very expression highlights the authoritative stance that medical providers assume themselves to have.

The discourse of childbirth is defined by obstetrical professionals, and not by the women themselves, who are subtly reduced from the active agents in their own care to the becoming the object of care. This risk discourse resoundingly fails in the Somali clinical care context because Somali women have lived experience and generational memories of substantial risk and loss. It is not so easy to define their agency out of existence by linguistic fiat. The amount of ostensive risk a patient is willing to undertake is a subjective decision based on the values of the individual mother and her designated allies and surrogate decision-makers such as family, community, religious leaders, and governing documents.

It is usual for most women in the United States to be highly risk-averse. On the other hand, evidence-based medicine and clinical practice guidelines define risk in a Western technology-based context and result in a form of social control of women's reproductive lives, as well as reinforcing both the authority of the medical model in obstetrics and the hegemony of this discourse.38

To illustrate this point, many of the routine interventions and diagnostics routinely used in obstetrics are risky both at the time of use and often in subsequent pregnancies. Usually, only the most immediate risks are disclosed. This fact is not tangential: it supports the idea allopathic care providers do not know everything, but if a patient does not follow their recommendations they often cannot imagine that the patient may be making the better decision. This demonstrates a gap in the hermeneutical resources for the providers. There are many contemporary examples of routine obstetrical interventions that may imperil future pregnancies (Table 2).

Table 2
Table 2:
Routine Obstetrical Interventions That Put Future Pregnancies at Risk

With each of these interventions, there are risks that are often not disclosed to the mother. This creates a perfect storm of both testimonial and hermeneutical injustice throughout the informed consent discourse: on one hand the woman's own ways of knowing are systematically discounted by her providers while on the other she is simultaneously given incomplete clinical information by people whom she has no reason to trust and who cannot imagine she has intelligence more germane to her decision that that of allopathic medicine.

CASE 4: PERINATAL SCREENING TECHNOLOGY IN SOMALI-AMERICAN HEALTH CARE

The routine, uncritical use of perinatal screening tests and technology presents yet another occasion for both testimonial and hermeneutical epistemic injustice. It has long been observed that the mere existence of any given technology implies that it should be used, giving rise to a “technological juggernaut.”43 Put more simply, when one has a hammer, everything looks like a nail.

Brauer44 argues that clinical information obtained by prenatal technology such as routine screening ultrasound forces decisions that are assumed to be (coldly) rational, as if the participants of the discussion were not affected by emotion, culture, custom, or other social forces. Furthermore, the net effect is that once any particular prenatal diagnostic technology becomes widely disseminated the routinely offered, screening technology cannot be refused neutrally. Once it becomes the standard of care to offer a screening test, a woman's refusal can be construed as a lack of responsibility on the part of the pregnant woman.45,46 This sense of medical opprobrium is of particular concern when technology is highly promoted and marketed in the United States due to corporate profit potential rather than any actual evidence of its screening or diagnostic utility. Not unsurprisingly, Browner and Press45 found that women submitted to the authoritative knowledge of professionals when it was “backed by” technology. Cherniak and Fisher46 believe that the differences in power between the provider and mother in advanced pregnancy make it difficult for a woman to decline interventions for fear that refusal to comply will be met with provider hostility and withdrawal of care.

Once again, the use of an intersectional lens demonstrates how there are multiple levels wherein women from Somalia may be disadvantaged. We have examined how obstetrical interventions in this setting may signify an active assertion of power.45 Brauer44 furthermore explains how routine use of prenatal diagnostic technology, originally intended to serve the ethical (and legal) goal of effecting patient autonomy (and patient rights), has actually eroded that autonomy.44 As it has unfolded over time, the routine and normalized offers of diagnostic prenatal testing actually necessitate decision-making that (1) falsely presupposes greater agency of the mother, (2) requires that decisions be made despite the actual limitations of a woman's autonomy, (3) is often based on inadequate informed consent, and (4) forces decisions about something which the pregnant women do not want to decide.

Specifically, routine use of perinatal screening technology requires an ostensive risk-benefit calculus that is highly antithetical to a decision-making process based on faith, such as in the concept of Inshallah, discussed earlier. Although technology is often mistakenly perceived to be therapeutic, most often prenatal technology is merely for screening or diagnostic purposes. The result is that when, for example, fetal anomalies are detected by technology patients are forced to make choices they would rather not make.28 Women are not always told at the onset of this testing cascade that the choice even to have a screening test or examination is theirs. Prospective mothers may not realize that they are not obligated to have the tests, and providers for their own reasons do not take the time to tell them the tests are optional. Decision-making that is forced by an insensitive system can both contradict a woman's wish to adhere to her faith and cause iatrogenic stress.44 Some of these miscommunications can be attributed to differing epistemological paradigms.

Epistemological diversity is when people simultaneously hold varying beliefs about what constitutes a theory of knowledge. Georges47 recommends legitimizing epistemic diversity. Certainly, in medicine, empirical knowledge resulting in evidence-based practice is legitimized, and for good reason. The concern arises when a patient's health care decisions based on the patient's values and preferred knowledge system are suppressed in exclusive favor of the values and knowledge system of the health care system and health care providers, even when there is no evidence that the provider's values and knowledge system are the only credible values and knowledge systems that should be used. For many people, including many people from Somalia, spiritual faith and knowledge is legitimized as opposed solely empirical knowledge. For people who have life experience in a place where Western health care prevention and treatment do not exist, it is unlikely that a sense of self-efficacy would be a dominant cultural paradigm. The conflict of epistemologies becomes more relevant when one examines the disparate maternal and child morbidity and mortality rates in Somalia and the United States. In the standard US clinical setting, the Eurocentric notion of empirical and rational knowledge systems and the notion of self-efficacy and risk discourse are privileged.

Epistemological diversity is called for in situations such as providing care for Somali-American women. Georges47 explains how nursing knowledge underwent a transformation and began to explore diversity in the early 2000s. The role of power relations along the axes of gender, ethnicity, socioeconomic status, and sexual orientation in shaping nursing knowledge has become an increasingly pervasive theme within nursing science.47 Georges47 implores nurses and other health care providers to deploy an epistemology of multiple sites of knowledge. This entails simultaneously privileging more than one way of knowing so that spiritual-based or tradition-based knowledge can be accepted as valid in individual and community health care contexts. Using this critical perspective and a theory of structural competency enables care providers to consider the people we care for in a holistic manner, which respects the Somali mother, like everyone else, as knower.

A THEORY OF STRUCTURAL COMPETENCY

We are not suggesting the abandonment of allopathic medicine, technology, or evidence-based health care. We are advocating for a much more holistic, “new approach to the relationships among race [sic], class, and symptom expression. It bridges research on social determinants of health to clinical interventions and prepares clinical trainees [health care providers] to act on systemic causes of health inequalities. Structural competency aims to develop a language and set of interventions to reduce health inequalities at the level of neighborhoods, institutions and policies.”48 The following statement by Metzel and Hansen captures how implicit bias and epistemic injustice can be identified and transformed so as not to perpetuate the social control of Somali women in this case, or of any women in clinical settings:

We contend that medical education needs to more systematically train health-care professionals to think about how such variables as race, class, gender, and ethnicity are shaped both by the interactions of two persons in a room, and by the larger structural contexts in which their interactions take place. And, that as such, clinicians require skills that help them treat persons that come to clinics as patients, and at the same time recognize how social and economic determinants, biases, inequities, and blind spots shape health and illness long before doctors or patients enter examination rooms.3(p127)

There are ways to facilitate the legitimization of women's embodied knowledge. Murray Davis38 suggests that woman-centered discourses can be facilitated in texts that contribute to birth practices that are congruent with the wishes of the mother. Others suggest that use of embodied ways of knowing by childbearing women and their providers (eg, midwives) opens us up to knowledge and power that provides for a more complete, and therefore a more optimal, decision-making process.49 Empowering women by giving them tools to navigate the political terrain of childbirth may help childbearing women's agency in childbirth and may be facilitated in childbirth education.49 Fawcett50 explains, not surprisingly, that immigrant women from Somalia expressed the desire to be perceived as rational beings who have the capacity to decide what is best for themselves. The voices of the participants (n = 40 interviews, n = 174 questionnaires) in Fawcett's study revealed a desire to be heard and insisted they not be seen as defective bodies or oppressed victims of a barbaric culture, but as women endowed with will and rational minds with the capacity to grapple with complicated issues and to decide what is best for them and their families.50

The burden of disproportionate childbearing complications among Somali immigrant women in the U.S. needs to be addressed not only in specialized technological obstetric interventions, solely determined from the medical gaze of their culturally modified bodies, but also in hearing their unique cultural voices in their quest to negotiate control of their bodies while protecting their childbearing knowledge and rights.50(p10)

For Somali women in Western settings of childbirth, the dynamic of exclusive medical authoritative knowledge and the power of medical technology functions to silence Somali childbearing values. Other ways of knowing which mothers use should be legitimized. Supporting the theory of structural competency could be part of the solution to empower women and recognize the value in their ways of knowing, as well as their human dignity and individual worth. We suggest that course content be required in foundational health care professional education and continuing education updates for health care providers and administrators, so they can recognize and mitigate these injustices.

SUMMARY

We have described how epistemic injustice, in both its testimonial and hermeneutical forms, adversely influences the interactions of health care workers providing reproductive health care for Somali women in the United States and is a detriment of the health and well-being of Somali mothers and babies. We believe the education of health care providers should include the pedagogical concepts of structural competency, which attends to the structural factors maintaining inequities rather than using a cultural focus, which individualizes blame and ignores structural factors. Based on these analyses, we are advocating for (1) a more critical use of technology with attention paid to the unintended consequences, (2) a culturally safe and patient-centered approach to care, (3) a physiologic approach to birth that is more consistent with the values of the Somali community, or of any woman's relevant community, (4) full, nonbiased disclosure of the various options regarding technology, (5) a fully-informed consent process regarding routine use of prenatal screening, diagnosis, and perinatal assessment technology, (6) translation of research on social determinants of health into action in the clinical context, (7) an approach to pedagogy and disparity reduction that uses a structural competency lens, and (8) legitimizing the patients use of epistemic diversity (ie, the legitimization of women's embodied knowledge). No longer should medical care options be advised without accounting for the perspective of the Somali woman, or any woman, and the decisions made by women about their own care should be accepted without implying judgment, because, indeed, it is not the place of care providers to pass judgment. We suggest that this course content be required in foundational health care professional education and in continuing education updates, which would help providers and administrators recognize and mitigate these injustices.

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      Keywords:

      clinical competence; cross-cultural care; knowledge; prenatal care; prenatal diagnosis; Somali

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