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Original Articles

The Impact of Primary Language Spoken on the Pain Experience of Children With Cancer

Acosta, Erika BS*,†; Agbayani, Crystle-Joie G. BA*,‡; Jenkins, Brooke N. PhD*,§,∥; Cortes, Haydee G. BA*,∥; Kain, Zeev N. MD, MBA*,∥,¶,#; Fortier, Michelle A. PhD*,‡,∥,**,††

Author Information
Journal of Pediatric Hematology/Oncology: May 2022 - Volume 44 - Issue 4 - p 135-141
doi: 10.1097/MPH.0000000000002440
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Abstract

In the United States, about 15,780 children between the ages of 0 and 19 years of age will be diagnosed with cancer each year.1 As a result of necessary medical procedures (eg, lumbar puncture, port access, bone marrow aspiration), children with cancer are at high risk for the experience of recurrent and chronic pain. These pain levels do not diminish with increased exposure and may even intensify if pain is not managed optimally.2 The repeated exposures to painful procedures may also alter children’s pain response, placing them at risk for future chronic pain.3 Children with cancer also experience painful disease-induced symptoms and treatment side effects which include mucositis, infection, and chemotherapy-induced peripheral neuropathy.4 Unmanaged pain in children with cancer not only places them at risk for recurrent pain related to medical procedures and illness during their childhood, but also for years to come. The experience and memory of procedural pain can impact the degree of upset related to future medical care such that children learn to anticipate pain and show increased distress and decreased cooperation at subsequent procedures.5 Adults who have experienced greater childhood medical pain report increased pain levels and less effective coping during medical procedures, as well as greater avoidance of medical care.6 Due to the short-term and long-term implications of unmanaged pain among children, it is critical to understand the pain experience of high-risk populations such as children with cancer.

Thus far, the literature suggests that pain of any type is undertreated in children and that children of ethnic minorities may be more vulnerable.7 For instance, Latino children presenting to the emergency department for fracture experienced undertreatment of pain compared with non-Latino children.8 Similarly, analyzing the experiences of family members of deceased pediatric patients found that children from Spanish-speaking families were at risk for receiving inadequate end-of-life pain management.9 Currently, little is known about specific ethnic and racial pain disparities that may exist among children with cancer. However, research investigating the subjective pain experience of Latino adults with cancer suggests that Latino children may experience different levels of pain compared with their peers.10 In a survey of a multiethnic sample of adults with cancer, Latino adults reported the highest levels of pain across multiple scales compared with Asian Americans, African Americans, and non-Latino White Americans.10 Studies investigating ethnic and racial disparities in children with cancer could shed light on pediatric pain disparities.

Experimental pain studies provide an avenue for better understanding disparities in the experience and management of pain in children with cancer. In comparison to studying pain in the clinical setting, experimental pain studies allow for greater control over the environment and pain stimulus. This permits for more detailed investigations of individual differences in pain and factors that could influence the pain experience.11 Evidence also suggests that experimental pain responses predict clinical pain symptoms.12 A recent meta-analysis regarding ethnic and racial differences in experimental pain found that minorities may experience higher pain sensitivity, less pain tolerance, greater pain intensity, greater pain unpleasantness, and higher temporal summation of pain compared with non-Latino White adults across all types of experimental pain tasks.13 These results are well-established for Black adults but are less clear in other racial and ethnic groups. Few studies have been conducted with Spanish-speaking Latino populations, and very minimal data exist on potential racial and ethnic differences in pain responses among Latino children with cancer specifically.

Most literature that does exist regarding pain disparities has focused on examining the effects of ethnicity and race but has neglected to evaluate the influences of other relevant sociocultural constructs that may help explain pain disparities. For example, language use and fluency have been suggested to influence both children’s expression of pain and providers’ assessment and treatment of pain.14 A growing body of literature suggests that acculturation, or the degree to which individuals adapt and assimilate to the dominant culture, may be the mechanism driving this association. Results from a study including Asian Americans revealed that language was a stronger indicator of acculturation compared with other acculturative domains such as cultural affiliation, participation in cultural activities, or cultural pride.15 In addition, language has been proposed to represent an intermediate or deeper level of acculturative change in individuals than other acculturative domains.16 Although there is no agreed-upon method for assessing acculturation levels, most instruments capture language use and preference. The primary language spoken at home is a common proxy measure of acculturation,17 and in the past, it has been utilized in pediatric studies to assess the acculturation level of children and their households.18,19

Recent research has found pain disparities among Latino individuals in comparison to non-Latino White peers based on language use or preference and based on acculturation using language as a proxy measure.20–23 Of note, research to date is inconclusive regarding whether acculturation buffers pain or contributes to greater pain. In women with rheumatoid arthritis, a study examining the influence of language on pain found that Latina women who primarily speak Spanish report greater rheumatoid arthritis pain.20 Research measuring acculturation levels based on language use have also associated less acculturation or more frequent Spanish language use with greater oral pain.21 However, when investigators examined the effects of language on pain among adults who answered the 2012 National Health Interview Survey, it was found that Latino adults who primarily speak Spanish (ie, are less acculturated) reported less intensity and frequency of pain.22 Similarly, it was found that less acculturated Mexican American Latinos with greater Spanish language use were less likely to report chronic pain.23

Most research has focused on adults, and consequently, the association between pain, language, and acculturation remains unclear in children with cancer. Furthermore, the few studies that have attempted to understand differences in the pain response of Latino children with cancer based on language use have found inconsistent results regarding whether Spanish language use is a risk factor or buffer against pain outcomes, as with the adult literature.24,25 As the current literature stands, language use as a proxy for acculturation in the context of experimental pain, particularly among pediatric patients with cancer, remains understudied.

The present study sought to help address knowledge gaps by examining behavioral pain response (self-report levels of pain severity, upset, and pain tolerance) in a sample of Latino and non-Latino White children diagnosed with cancer during a cold pressor pain task. Consistent with previous research, the present study used primary language spoken in the home (ie, English or Spanish) as a proxy measure of acculturation.26 Based upon previous research, it was hypothesized that less acculturated (primarily Spanish-speaking) children would report higher pain severity and have a lower pain tolerance compared with more acculturated children (primarily English-speaking).

METHODS

Participants

Study participants included 67 children ages 6 through 18 years being treated for cancer at the Hyundai Cancer Institute at Children's Health of Orange County (CHOC). Participant demographics are presented in Table 1. On average, participants were 11.72±3.78 years of age and most participants were male (n=41, 61%). Leukemia was the diagnosis for the majority of participants. Fifty-five percent (n=37) of families were primarily English-speaking, whereas 45% (n=30) were primarily Spanish-speaking. All study-related communications, forms, and procedures were given in each family’s primary language. The study participants were part of a larger study that focused on the influence of emotion regulation on pain responses of children with cancer over time, results of which have previously been published.27,28 Although the focus of the larger study was to examine the impact of different emotion regulation conditions on pain response, including memory for pain, no group differences were observed. Thus, individual emotion regulation conditions were combined, and for the purposes of this study, only families who spoke English and Spanish were included. This study was approved by the Institutional Review Board of CHOC, and written consent was provided by parents. When appropriate, assent was provided by the children.

TABLE 1 - Child and Family Demographic Characteristics
n (%)
Child demographics
 Child sex
  Male 41 (61.2)
  Female 25 (37.3)
  Other/missing 1 (1.5)
 Age (mean±SD) 11.72±3.78
 Child ethnicity
  Non-Hispanic White 21 (31.3)
  Hispanic or Latino 46 (68.7)
 Cancer diagnosis
  Leukemias 35 (52.2)
  Central nervous system tumors 10 (14.9)
  Sarcomas 10 (14.9)
  Other 6 (9.0)
  Lymphomas 5 (7.5)
  Missing/prefer not to answer 1 (1.5)
Family demographics
 Primary language spoken at home
  English 37 (55.2)
  Spanish 30 (44.8)
 Annual household income (US dollars)
  ≤20,000 19 (28.36)
  21,000-50,000 20 (29.85)
  51,000-100,000 15 (22.39)
  ≥100,000 13 (19.40)

Procedures

Participant eligibility was determined through assessment of medical records, appointment schedules, and in consultation with health care providers. On the day of their clinic appointment, a research assistant (RA) asked potential participants if they would like to partake in a study that aimed to determine their response to a challenging task called “The Cold-Water Game.” Participants were informed that they would submerge their hand in cold water and be asked to rate their level of pain and upset.

When families arrived at the laboratory for the experimental pain task, they completed demographic questionnaires. Upon completion, children were separately taken by an RA to the room where they would complete the cold pressor task (CPT). It was explained to the children that they would place their hand in the cold water and that while their hand was in the water, they would be asked to rate their pain and upset at different time points. Children were also asked to rate their pain and upset after removing their hand from the water and at 1 week following the CPT.

CPT

The CPT was completed consistent with guidelines suggested by von Baeyer et al.29 First, children were oriented to the procedure by placing their nondominant hand in room temperature water and rating their pain and upset every 30 seconds for 2 minutes. Then, children were instructed that they would move on to the second phase of the procedure, where they would place their nondominant hand in the cold pressor apparatus and remove it when their pain became unbearable. The temperature of the water was maintained at 7°C. The RA recorded the child’s pain and upset ratings every 30 seconds and upon completion of the CPT. The time at which the child removed their hand from the cold water was also recorded (ie, pain tolerance). A 4-minute uninformed ceiling was utilized such that if the child’s hand remained in the water at the 4-minute mark, they were instructed to remove it.

Measures

Demographics

Information such as child age, sex, ethnicity, and primary language was collected from parents.

Pain Tolerance

The length of time from the child placing their hand into the cold water until the time of removal was calculated as a measure of pain tolerance. A longer period of time reflected greater pain tolerance.

Pain and Upset Severity

Children were asked to rate their pain every 30 seconds during the CPT after they removed their hand from the water, and at a 1-week follow-up using a developmentally appropriate 0 to 10 Numeric Rating Scale.30–32 The question regarding pain severity posed to children ages 6 through 11 years was, “How much is it hurting right now?” on a scale of “Not hurting”=0 to “Hurting a whole lot”=10. The question posed to children ages 12 through 18 years was, “How much pain are you in right now?” on a scale of “No Pain at all”=0 to “A Lot of Pain”=10.

To measure distress, children were asked to rate how upset they were every 30 seconds during the CPT after they removed their hand from the water, and at a 1-week follow-up using the same 0 to 10 Numeric Rating Scale they used to rate their pain. The question regarding upset severity posed to children ages 6 through 7 years was, “How upset (worried or bothered about something uncertain) are you right now?” on a scale of “Not Upset”=0 to “Very Upset”=10. The question posed to children ages 8 through 18 years was, “How upset (uneasy or worried about something uncertain) are you right now?” on a scale of “Not Upset”=0 to “Very Upset”=10.

Statistical Analyses

Averages for self-reported pain and upset ratings and pain tolerance were calculated using means, SDs, medians, and interquartile range. Repeated measures analysis of variance was conducted to determine whether there were differences in pain and upset ratings over time and whether these differences were impacted by language. The primary language spoken (English or Spanish) was entered as the independent variable, and dependent variables included the average pain and upset ratings during the CPT and at the 1-week follow-up.

Because pain tolerance (the amount of time a child kept their hand in the water) was not normally distributed, a Cox hazard regression model was utilized to examine whether there were differences in pain tolerance as a function of the language spoken. For children who did not remove their hand from the water until they were instructed to do so, data were right-censored as it is unknown when they would have removed their hand without instruction. In this analysis, the time the children maintained their hand in the water during the CPT was included as the dependent variable, and primary language was the independent variable.

Average household income was used as a covariate in all analyses to ensure group differences in income were accounted for.

RESULTS

Associations Between Language, Pain, and Upset Scores

Repeated measures analysis of variance revealed that although there were no differences in pain recall over time (F1,64=0.034, P=0.854), there were significant group differences in pain severity as a function of primary language spoken at home (F1,64=5.58, P=0.021; Fig. 1). Specifically, at the time of the CPT, children who primarily speak English at home reported an average pain severity of 4.24±3.47, whereas children who primarily speak Spanish at home reported average pain ratings of 6.34±3.06. Similarly, 1 week after the CPT, children who primarily speak English at home recalled their average pain as 4.73±3.36, whereas children who primarily speak Spanish at home recalled their pain severity as 7.07±2.63.

F1
FIGURE 1:
Group mean pain score comparisons illustrating the levels of pain severity in primarily English-speaking and Spanish-speaking children. CPT indicates cold pressor task.

Regarding upset scores, both within and between-group differences emerged. Specifically, upset scores were recalled to be higher at 1 week following the CPT compared with on the day of the CPT (F1,64=6.98, P=0.010; Fig. 2). In addition, upset scores differed significantly between the 2 groups (F1,64=7.69, P=0.007). At the time of the CPT, children who primarily speak English at home reported an average upset severity of 0.58±0.91, whereas children who primarily speak Spanish at home reported average upset ratings of 1.56±1.66. Similarly, 1 week after the CPT, children who primarily speak English at home recalled their average upset as 1.92±2.77, whereas children who primarily speak Spanish at home recalled their upset severity as 3.93±3.48.

F2
FIGURE 2:
Group mean upset score comparisons illustrating the upset levels in primarily English-speaking and Spanish-speaking children. CPT indicates cold pressor task.

Associations Between Language and Pain Tolerance

After controlling for income, Cox regression analysis revealed that children who primarily speak Spanish at home demonstrated lower pain tolerance (β=1.47, SE=0.47, Wald χ2=9.66, P=0.002, hazard ratio=4.34, 95% confidence interval: 1.72-10.93). Thus, children who primarily speak Spanish at home were 4.34 times more likely to remove their hands from the water before the 4-minute ceiling compared with their peers who primarily speak English at home.

DISCUSSION

A wealth of literature suggests differences in pain experience based on race and ethnicity, however, very few of the studies in this body of research have included acculturation in the examination of racial and ethnic differences in pain. Although Latinos have been shown to express greater levels of pain in both clinical and experimental settings as compared with non-Latino White individuals,33,34 there is a lack of clarity regarding the mechanisms driving this association. For example, some studies that include measures of acculturation suggest that acculturation does not influence the pain expression of Latino adults,35–37 whereas other data suggest that higher levels of acculturation are associated with greater reports of chronic neck and back pain,38 and decreased orofacial pain.21 In addition, the overwhelming majority of research in this area has been conducted exclusively with adult populations; therefore, whether acculturation impacts the pain expression of Latino children is not well understood. Accordingly, the present study extended this area of research by focusing on the impact that acculturation, as measured by primary language spoken at home, may have on the pain expression of Latino and non-Latino White children with cancer in an experimental pain setting.

The present study showed that Latino children with cancer who primarily speak Spanish at home experienced significantly greater pain levels, higher upset scores, and lower pain tolerance during an experimental pain task when compared with non-Latino White children who primarily speak English at home. Previously, Pfefferbaum and colleagues explored the relationship between acculturation and pain expression in Latino children with cancer. Acculturation was measured with a language-based scale, and similar to the current study, participants were primarily of Mexican American descent.25 However, Pfefferbaum and colleagues found that acculturation did not influence pain expression in their study sample. As such, it is important to note the factors which may account for differences in these study findings. In the Pfefferbaum and colleagues’ study, pain responses were collected as children underwent invasive procedures as a part of their cancer treatment, whereas the current study was conducted in a laboratory setting. Moreover, primary language spoken at home was used as a proxy of acculturation in this study, and although this approach has previously been validated, it does not allow for examination of nuances of acculturation that may be important in the context of pain.

The use of experimental pain tasks in a laboratory setting allows for control over elements other than acculturation that may impact a child’s pain and pain expression. For example, parental presence is a factor that may discourage children from expressing their pain because they fear negative implications or worrying their parents.39 In Mexican American children, the effect of limiting parental presence may be magnified by cultural attitudes regarding pain. Familismo, for instance, is the core value of family closeness by which a child’s pain may be viewed as affecting the whole family, not just the individual child.40 Controlling for parental presence may have allowed children to feel more open about expressing their pain without having to consider the effect on family members, particularly for Latino children who reported higher pain levels than non-Latino children. Similarly, parental presence may also interact with the core value of stoicism to influence the pain experience of Mexican American children.40 Stoicism contributes to an expectation to endure pain without complaint,41 and without parental presence, pressure to exhibit stoicism may be reduced resulting in higher reports of pain among Latino children.

The research focused on the influence of culture on the pain experience of Latinos has examined how pain experience differs compared with other racial and ethnic groups. However, Latino ethnicity already encompasses individuals of many different racial backgrounds and cultures. Thus, considering Latino ethnicity alone may neglect other aspects which influence children’s pain experience, including acculturation. In the present study, the proxy utilized for children’s level of acculturation was parent report of the primary language spoken at home. Children who were less acculturated (ie, from a primarily Spanish-speaking household) exhibited poorer pain outcomes than their more acculturated (ie, English-speaking) peers. Acculturation influences the level to which an individual may hold cultural values such as familismo and stoicism that affect the pain experience.41 Less acculturated children may also encounter barriers to accessing appropriate pain coping education and resources as compared with their acculturated peers. Evidence suggests that language and cultural differences among parent caregivers of pediatric cancer patients contribute to less successful health care access, comprehension, and implementation.42 Children with cancer who undergo numerous painful medical procedures would benefit from pain coping skills but may not have ample access as potentially indicated by their acculturation level. Overall, investigating how acculturation may lead to differences in pain expression provides a deeper understanding about the impact culture has on the pain experience of Latinos.

The differences observed in the present study have important clinical implications. These findings demonstrate the complexity of pain and suggest that assessments of a child’s pain should consider multiple factors, including a child’s acculturation level, parental anxiety, and family race and ethnicity. Parental anxiety has been demonstrated to influence children’s pain,43 and although research regarding ethnic and racial differences in children’s pain is limited, differences have been found in the experimental setting44 and in the pain response and perceptions of Latino adults.33,34 In clinical practice, bilingual providers are needed to help educate primarily Spanish-speaking Latino parents in the assessment and management of their children’s pain. This education should also extend to resources, such as written material, being made readily available in Spanish. Changes such as these could improve the quality of care of patients from primarily Spanish-speaking households as many studies have found that patients who experience language barriers with their providers feel less satisfied and encounter more problems with their care.45 In addition, one study found that 32% of primarily Spanish-speaking parents caring for a child with cancer felt their child’s care would be improved if English was their primary language.46

Of note, children recalled significantly higher upset scores at 1 week following the CPT compared with during the CPT across both language groups. While the difference did not reach statistical significance, there was also a similar trend observed in children’s recalled pain scores at 1 week following the CPT compared with during the task (Fig. 1). Both findings are consistent with prior literature supporting associations between children’s memory of medical events (including procedural pain and upset) and poorer pain outcomes in future procedures.5 For emotional upset, a study of children diagnosed with leukemia suggests that children who experience higher distress during lumbar punctures may recall more severe distress at follow-up.47 Further, memory for more severe distress predicted higher distress at a subsequent lumbar puncture procedure.47 The higher upset scores recalled at 1-week follow-up in the current cohort study may thus be partially attributed to children’s upset severity during the CPT. These findings emphasize that understanding children’s memory of pain, including upset, is a crucial step in developing strategies to minimize procedure-related distress.

The limitations of the current study include a small sample size and a wide range of age and cancer diagnosis. Children with different diagnoses, and children at different stages of cancer, undergo an array of treatment approaches which were not controlled for in the current study. Another limitation is the absence of a healthy comparison group, which would have provided clarity regarding whether observed cultural differences in the pain experience are unique to children with cancer or if these differences are present in children without cancer as well. In addition, the results from the CPT may not provide an accurate reflection of the children’s clinical pain experience. Literature has demonstrated that pain tolerance is influenced by individuals’ knowledge of a task’s time-limitation.48 Given that children can remove their hand at any time during the CPT, their pain perception may have been impacted. It is also important to consider that in the experimental setting, factors that may contribute to the pain experience of children with cancer, such as procedural anxiety, are eliminated.

Future studies could explore whether results from the CPT can predict the clinical pain response of children with cancer. Future study designs should also note race and values salient to specific cultures as this can further inform our understanding of the pain response. Findings from the current study suggest that perhaps the joint influence of parental presence and cultural values should be considered in research investigating how Latino children with cancer express pain. For instance, future studies may explore how asking a child to rate their pain on a computer screen turned away from parents influences pain reporting or how increasing parent participation in their child’s pain management affects pain ratings among Latino patients. A standardized or proxy measure of acculturation will also be key in clarifying the influence of acculturation on clinical outcomes among children with cancer, including pain. Although the present study and past studies with adult samples suggest that acculturation impacts the pain experience, acculturation’s effects on the pain response of children with cancer who primarily speak Spanish at home remains understudied and requires further investigation.

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Keywords:

acculturation; pain; language; psychosocial oncology; pediatric cancer

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