Multiple studies demonstrate ethnic and cultural disparities in children's access and quality of health care in the United States.1,2 The effects of these disparities for the future health of our country as these children grow into adulthood is concerning, but a multicultural approach of care for these children, coupled with systemic improvements in access and health care delivery, can have a dramatic effect. As the population of immigrant patients and patients seeking alternative health care grows in this country, and in the interest of an equitable provision of care, pediatricians must equip themselves with tools to navigate such scenarios and achieve the best possible outcomes for individual patients and for subpopulations.
The risks of being unaware of patient health beliefs include a potential trust breakdown in the provider-patient relationship, treatment nonadherence, health outcome disparity, and in the worst-case scenario, possible patient harm from medication interaction or from the traditional remedy itself.3 The result for providers can be frustration, confusion in diagnosis and treatment plan, frequent changes to maintenance medications, or unintended harm.4 With this in mind, we review three common pediatric concerns in the context of health belief systems, summarize culturally aware approaches to successful patient interactions, and offer a resource list for further reference.
Despite decades of health care provider efforts at education about fever, its care, and consequences, “fever-phobia” exists among parents of almost every ethnic origin and socioeconomic status.6,7 Fever-phobia includes parental fears about resulting convulsions, coma, and even death. When studied, perceptions about the temperature that can lead to these dire consequences ranges from 100 to 103°F.6 In fact, our care-motivated “action” in medicating children who are febrile in our clinical environments may contribute to and reinforce these misplaced fears.
In a study of Nigerian families, researchers found that there was a belief that a child's illness was related to their spirit's will to live or die, and subsequently their management of a febrile illness may have included rituals and other cultural practices.8 In Cambodian and other southeast Asian communities, the word “krun” is used to describe an illness; however, it may be erroneously translated as “fever.” This confusion can lead to a misdiagnosis or inappropriate plan of care by a provider. Furthermore, in Kareni and Thai populations, the strong association of fever with malaria is present in their home countries. This may lead patients and families to presume that their child with a fever has malaria despite the low incidence of that infection in the US, increasing “fever-phobia” in these populations. Finally, in some Latino communities, a febrile illness may be believed to be caused by the “evil eye” of an admirer leading to misunderstanding of the pathophysiologic cause of fever in these communities.
In addition to cultural beliefs on the origin of fevers, traditional treatments for fever across various cultures is variable. These treatments include sponge bathing with warm water or rubbing alcohol, walking with the child, removing clothing, rubbing with an onion, rubbing of oils, ingestion of various herbs or teas, eating certain “cooling” foods, or the passing of a raw egg over the body to remove the “evil eye.”9
Certainly, every pediatrician has encountered this concern, and sometimes despite the doctor's best attempts at reassurance, its discovered later that the family pursued emergency care for fever in an otherwise healthy child. How then can pediatricians reassure and prevent this ongoing fever phobia? One review suggests that a preventive approach toward culturally aware fever-related education, implemented at well-child visits and prior to febrile illness, may be the most effective strategy.10 The American Academy of Pediatrics (AAP) Clinical Report on this topic recommends against routine use of antipyretics, against using multiple antipyretics in combination, and advises medication use for comfort only.11 In addition to these recommendations, we recommend using a culturally sensitive approach when speaking with families of different ethnic and cultural backgrounds.
As is well studied and frequently experienced, vaccine hesitancy and refusal has become commonplace in pediatric practices.12 However, the recognition of social, political, religious, and cultural health beliefs in this public health issue has been limited.13 Although it should be noted that vaccine hesitancy is often specific to certain vaccines, eg, MMR (measles, mumps, and rubella), HPV (human papillomavirus infection), or influenza, the issue of vaccine hesitancy is complex. In reference to the 2015 California measles outbreak, “there is a complex relationship among societal networks, individual liberties, and the ultimate eroding of our public's immunity to vaccine preventable diseases.”12 Studies on specific ethnic groups have exemplified these ideas and offer culture-specific interventions for providers to counter mistrust and misinformation. In the US, subgroup belief systems, especially among tight-knit communities, may affect their choices more greatly than overall religious or cultural beliefs. Although some would claim that complementary medicine practitioners contribute to this issue, a critical review found that countering vaccines is not a part of their practice, but more a part of the underlying health beliefs of the patients who seek their care.14
As measles is an illness with immediate implications and multiple international outbreaks in recent years (Africa, Europe, Asia) and as there is currently a mumps outbreak in Japan, we will focus here on MMR vaccination as our primary example. Several US outbreaks in recent years have been within subpopulations who were at increased risk due to high vaccine refusal rates combined with exposures to international travelers who were infected with the measles virus.15,16 In fact, the Centers for Disease Control and Prevention (CDC) now reports outbreaks based on geographic, cultural, and socioeconomic groups. Although the US achieved measles elimination in 2000, increased vaccine refusal and travel exposures have resulted in a dramatic number of reported cases since 2013. In the well-known 2015 “Disneyland” measles outbreak, “over 80% of the cases occurred among persons who were unvaccinated or had unknown vaccination status.”15,16
Also, according to the CDC, outbreaks occurred in Orthodox Jewish communities in the Northeastern US in 2018.15 Interestingly, vaccine refusal rates in these communities were less related to religious refusal, even though porcine origin growth media and vaccine stabilizers are not congruent with Jewish dietary laws. Rather, refusal was related to community health beliefs, including fears of vaccine side effects and mistrust of the medical community. Additionally, some ultra-orthodox Jewish communities share a religious fatalism belief — that is, illness is in the hands of God.17
As has been shown, non-health care provider influences can outweigh provider recommendations for vaccination. For example, in the Strategic Advisory Group of Experts Working Group Report on Vaccine Hesitancy, the example of an Orthodox Jewish community in Israel is cited where polio vaccination acceptance increased after local rabbis began recommending it. Surveying specific groups' reasons for hesitancy, then partnering with cultural and religious leaders as cultural brokers of a population, may be an effective strategy to improve vaccine confidence and uptake.13
A 2017 Morbidity and Mortality Weekly Report profiles an outbreak in a Minnesotan Somali-American community, identifying fears about increased autism diagnosis caused by the MMR vaccine.18 These fears had no known cultural or religious basis, but circulated among this tight-knit group, and resulted in MMR vaccine refusal becoming a culturally accepted norm. Concerted efforts by community and religious leaders and public health and medical professionals focused on spreading culturally appropriate information through oral communication methods preferred by this community, and this resulted in a considerable increase in vaccination rates within 1 month of the outbreak onset.18 In a Colorado Marshallese community, partnership with church leaders improved MMR vaccination rates after four cases were reported; this community engagement likely stopped further spread and interrupted the outbreak.19
In the context of a society that includes traditional medical practices, trust building between families and health care providers, as well as education regarding risks and disadvantages for children who are unvaccinated, are helpful. A strong provider recommendation in combination with messaging through culturally appropriate social networks can also lead to increased immunization rates.20 Using communication methods that are acceptable and trusted is essential to countering misinformation.
A review of sleep habits in school-aged children found that ethnic and racial disparities in sleep duration and adequacy exist and may effect child well-being and achievement.21 Pediatricians often advise parents that children should sleep independently, learn to self-soothe, and have a bedtime routine that does not include bed sharing. This is based on AAP guidelines for safe sleep, sudden infant death syndrome (SIDS) prevention, and strategies for safe sleep of infants who are breast-fed.22,23 However, pediatricians may encounter patients who continue their own culture-based practices that allow for later bedtimes, co-sleeping in parents' beds, or bedtime routines that require significant parental involvement. In fact, some cultures consider it cruel to leave an infant sleeping alone, and solitary sleep for infants and young children is a relatively new concept adopted mainly by Western societies.24 Because many pediatricians work with populations who share an interdependent, rather than independent, cultural framework, we must frame this issue in that context. That is, a culture that values autonomy and self-reliance will be more likely to encourage independent infant sleep than a culture that values collective achievement and thus commonly relies on a high level of parental involvement for infant sleep.25
Infant safe sleep recommendations are aimed mainly at prevention of accidental suffocation and strangulation. Prone sleep position, excess bedding or toys, and bed sharing are contributing factors to unsafe sleep. Although people who have recently immigrated to the US tend to have lower SIDS and injury incidence, a small telephone survey study of Latina teenage mothers found that although a majority of mothers had access to a safer sleep space, many continued to use prone sleep position and adult beds as a primary sleep location.26
Two separate narrative reviews of US and international literature found that despite a consistent awareness of risks of bed sharing, parents continued to be ambivalent toward bed sharing. Their reasons included the following: breast-feeding and preservation of maternal sleep, infant monitoring and mother's emotional comfort, the perception of improved quality or longer sleep duration for infants, mothers, and others in the household, promotion of bonding involving use of a “family bed,” infant safety, lack of a crib or space for one, a response and remedy for infant crying, and cultural tradition along with a belief that bed sharing does not cause harm.24,27 Regarding breast-feeding and bed sharing, some studies indicated longer duration of breast-feeding for infants who slept in the family bed until age 12 months.24,27
Mileva-Seitz et al.24 found higher practice of bed sharing in Asian, African, and South American countries than North American and European nations. In cultures where solitary sleeping is more common, parents tended to report less sleep disturbances. Aside from well-known SIDS incidence data, there was no consistent data to indicate harm either from solitary sleeping or bed sharing for somatic disorders, behavior problems, infectious disease, or maternal mood. This is likely due to cultural acceptance of bed sharing in these communities. Parenting styles such as attunement (reliance on infant cues) and a lower emphasis on the importance of sleeping through the night may influence practice and lead to intentional bed sharing.24
Thus, if our Western cultural construct emphasizes development of “self-soothing” skills and independent sleep, we miss an opportunity to discuss cultural norms in bed sharing with our patients. As Ward27 states, “several studies identified the need for tailoring safe sleep messaging to address the cultural meaning of bed-sharing,” addressing parental concerns, their reasons for bed sharing, and socioeconomic circumstances. If autonomy and self-reliance are the parent's objectives, they are more likely to encourage solitary sleep, whereas a parent who chooses to bed share may not value these same principles. A focus on changing parental behavior through culturally sensitive discussions is essential to limit untruthful reporting and “covert” unsafe sleep practices. Open discussions regarding alternatives such as room sharing can provide a compromise that allows for safe-sleep practices but also incorporates cultural norms. Education regarding safe sleep should be not only linguistically appropriate, but also culturally appropriate and inclusive of multigenerational households. Reviewing safe-sleep practices to improve sleep and milk production in a mother who is breast-feeding may be beneficial as well.
A National Academy of Sciences Consensus report recommends patient-based interventions like patient empowerment, along with systems-based changes targeting access to care and increased use of community health workers as cultural liaisons.4 The report identifies provider implicit bias and stereotype as possible sources of disparity in the provision of care, and therefore “likely to be a more important target for intervention efforts.” However, immediate effect on health care disparity can also be achieved with increased awareness and improved strategies for communication with patients who have differing health beliefs. Articles that describe these ideas can be found in Table 2, along with several other useful resources.
Cultural Competency Resources
Interview strategies. Asking a family open-ended questions about their health beliefs, use of traditional remedies, and home circumstances can facilitate a more productive discussion that is tied to parental expectations. For example, ask “what do you think is causing your child's illness?” and “what kinds of treatments have you tried?” or “what kinds of treatments do you think are necessary?” Use of a translator rather than a family member is best practice to facilitate trust and communication of nonverbal cues, as well as to limit biased and dismissive interpretation. A provider's body language can communicate volumes, so being aware of authoritative stances, shaking hands, or even direct eye contact, which can be construed as commanding rather than collaborative. As many immigrants have experienced racism and persecution, preface sensitive questions with medical reasoning to not appear intrusive or trigger fear of consequence. The “Teach-Back” method can be useful to ensure cross-cultural and cross-language understanding of treatment plans, which ideally have been developed in partnership with a family's belief system.28,29
Cultural broker. Many cultures include extended family members or esteemed religious leaders as their medical decision-makers. A flexible practitioner includes these people as a part of important medical decisions, especially informed consent, vaccination, or treatment of chronic medical conditions. Using cross-cultural negotiation strategies includes determining patient priorities, describing specific management options, and gauging without assuming acceptance. Recognizing that using all of the above strategies can be time consuming, a physician should allow for several visits to build this trust and rapport.29
Autonomy versus independence. In Western health belief systems, each autonomous individual has control over their health and each disease has a specific cause. Western societies value qualities such as autonomy, individual achievement, and self-reliance. However, for many other cultures, including Asian, African, and Latin American, health and disease are believed to be a result of misfortune, destiny, or an imbalance of unseen forces. In these cultures, important values include collaboration, sharing, and collective achievement. These beliefs can lead to wide variation in priorities and parenting styles.25 This variability is often exemplified in our first-generation patients who experience cultural conflict as they grow up in a culture that differs from their parents. Eliciting these value differences is an important element of care and gaining a parent's definition of a successful outcome can help make a patient-provider interaction more successful.