Perceptions of Discrimination among Mexican American Families of Seriously Ill Children

Introduction

Culturally competent health care is becoming increasingly important due to the rapid growth in population diversity in the United States and other nations. Despite reports that culture and language affect quality of care, morbidity, mortality, and patient satisfaction,^1–5 few studies address the role of culture in pediatrics. Some describe pediatricians' use of interpreters for patients with limited English proficiency^6,7 and serious clinical consequences related to language barriers.^8–10 Other reports address racial/ethnic disparity regarding children's treatment for specific conditions such as asthma ¹¹ and gastroenteritis ¹² ; children's treatment in locations such as primary care practice ¹³ or emergency departments ¹⁴ ; wait times ¹⁵ ; and provision of prescription medications, analgesia, and diagnostic evaluations. ¹⁶ Little attention has focused on experiences of families from culturally diverse backgrounds.^17–20

This article derives from a larger study aiming to describe experiences of Mexican American and Chinese American families of seriously ill children who died, to learn how families communicated, made decisions, interacted with hospital staff, and cared for their child. The article describes 1) Mexican American participants' perceptions of discrimination by HCPs due to race/ethnicity, language barriers, socio-economic status, and appearance; and 2) participants' reactions to perceived discriminatory conduct.

Methods

Procedures

Participants were interviewed by bilingual/bicultural research associates in the language and location of their choice. Interviews were recorded, then translated and transcribed by bilingual/bicultural transcribers.

Results

Participants' accounts of perceived discrimination occurred in a number of settings where their children received care, including the two study sites, other hospitals, and community clinics.

Discrimination Due to Race/Ethnicity

Parents perceived discrimination when they were treated differently from other families and attributed the differential treatment to being Mexican. Three families reported being forced to vacate a patient room when a white child was admitted. One father, whose child was in a four-bed room, reported that parents of the other children (2 white, 1 African American) were asked to move but refused. This father was then asked to move, even though his child was more severely ill than the other children. He refused, but when he left to get food, his child and their belongings were moved into the hall.

Another family lived many miles from the hospital and had no car; the grandmother depended on others to drive them. They arrived after visiting hours, and a nurse said they were “too many” and had to “visit one by one.” They noticed a larger white family visiting together and asked why that family was allowed after hours. The nurse replied that the white family asked permission. The grandmother concluded, “We were not allowed to see [the baby] because we are Mexican.”

A mother recalled nurses failing to come feed her hungry baby and expressed her feelings about such treatment: “How could they do this to us just because we're not Caucasian? Since we can't speak English, they push us aside. One time, I was in the same room as a Caucasian woman, and the nurses were always going in and asking her what she needed. I thought, ‘Wow, it's very obvious that they ignored us,’ but they kept checking on the Caucasians to see what they needed.”

Another child's parents reported that their nurse asked other families whether they needed anything, but did not ask them. On one occasion, the father eventually emptied his child's bedpan because their nurse never came, even though he observed her helping other children and their families. Their child had been in the hospital numerous times over many months, along with several other Latino children. He reported: “We were about five or six [parents]. They brought us a doctor and we asked him, ‘Why are there more Caucasians than Mexicans getting cured?’ ” According to this father, the physician explained, “When chemotherapy was invented, it was invented for Caucasians. Maybe Caucasians and Latinos do not have the same blood.” The father replied, “But in transplants, there's a Latino and there's a Caucasian, and anybody can be a donor as long as he's compatible.” The physician said, “I don't know. Don't ask me about this.”

Discrimination Due to Limited English Proficiency

Participants perceived discrimination as resulting from language barriers. One English-speaking father explained, “If you [HCPs] are talking to somebody who is fluent, you're gonna say, ‘Okay, let me try to give you the details.’ So, you're treating that patient a little bit different than another.” A mother who spoke no English noted: “Since we don't speak English, they would always leave us for last. My baby was sometimes so hungry, and the nurses wouldn't come. I would go to them, but how could I tell them if I didn't know how to speak any English? When I needed something and nobody spoke Spanish, I would go to the social worker and she would come and tell [other HCPs], ‘She doesn't speak English. Please see what she needs.’ But the social worker was not available all the time, and I had to go to them so they could give me the milk for the baby. The baby would be crying because he was so hungry and they wouldn't give me the milk. I thought, ‘If I could just give it to him, I wouldn't ask them to give it to me.’ He would also vomit a lot and they wouldn't come.”

Having Spanish-speaking HCPs did not eliminate the perception of discrimination. One mother reported that a Spanish-speaking nurse “said she spoke Spanish when she felt like it. And when she didn't feel like it, she said she didn't speak Spanish.” In contrast, an English-speaking physician who met with the family attempted to speak Spanish and use simple sign language. His attempts to communicate were greatly appreciated.

Discrimination Due to Socio-Economic Status

Families attributed some occurrences of discrimination to “being poor.” One father said, “We don't pay in cash. That's why we're treated badly.” Another father believed his child received worse care than his friend's child because his friend had health insurance and he did not. Both fathers believed that insurance accounted for the perceived discrepancy in care.

Discrimination Due to Appearance

Some participants spoke English and were not poor; they believed their Mexican appearance alone evoked discrimination. One father, born in Mexico, lived many years in California and thought of himself as “more Californian than Mexican.” He reported encounters with HCPs who assumed he was uneducated and poor based on his Mexican appearance: “The doctors don't really know whether I'm Joe-the-farmer or Joe-the-doctor. All they see is my face. And I think, ‘Hey, this guy doesn't think I know what I'm doing, you know?’ ” A father who is bald and tattooed felt these features contributed to the discriminatory behavior he experienced: “Because of the way I dress, because I have tattoos and I'm bald, I imagine they must have seen something negative – maybe someone who was a cholo [Mexican outlaw] or something.” A teenage mother believed she was treated differently because she was Mexican and young. One mother's comment summarized several parents' perceptions: “If you look acceptable to them and you speak their language, they treat you well and dedicate more time to you.”

Participants' Responses to Perceived Discrimination

Participants reported feeling hurt, saddened, and confused regarding the differential treatment they received from HCPs who “should care equally for all people.” Parents declared, “We're human beings and worthy of respect.” The tattooed father said, “I have feelings just like you and everyone else.” The grandmother commented, “We all have a good heart and feelings.”

Parents searched for explanations. One father wondered if HCPs were paid less to care for Mexican American families. A mother, referring to her husband's work environment, said, “Being Latino, we are accustomed to work on whatever is available. No matter where he works, there will be discrimination and also good people.” She regarded and accepted discrimination as a fact of her cultural group's lives. Still, she said, “they should know better.”

Few parents spoke up about unfair treatment or complained about poor quality of care. Most assumed a quiet, passive position, according to their cultural norm of respecting authority figures and not questioning them. The grandmother coped by “remaining quiet and not drawing attention to myself” because she did not want people to think, “Mexican people are weird.” One mother feared recrimination if her husband spoke up: She believed her child would receive even poorer care.

Only two parents spoke up about the discriminatory care they believed their child received. After months of feeling pushed aside, the tattooed father requested a team meeting to address his concerns about his son's care. “I asked, ‘Is it because I'm Latino and I look like a cholo?’ Maybe they're afraid of me. Maybe I dress like a cholo, but pinch me, pinch a white man, and it hurts the same. Don't think that because I have tattoos it doesn't hurt me. It hurts me the same as everyone else, maybe more.” He said the physician expressed surprise and promised to meet with other parents to acquire more information, but the father never learned the results of any follow-up.

When the grandmother and siblings were denied after-hours and group visitation, the child's mother spoke up: “I got mad because there was another family downstairs that had six members. I had only four children. I was bothered, and I felt discriminated against [because] the other family was white. I asked [the nurse], ‘Are you doing this because the other family is American? What is going on?’ ” Another nurse intervened, admonishing the first nurse: “If you permit the others to visit, you need to allow this family to visit, too.”

Parents did not perceive all HCPs as discriminatory; their stories were about encounters with individual nurses or physicians. Those encounters had profound and long-lasting effects.

Some parents coped by connecting with other parents. Some parents had an advocate, usually an HCP, who listened to their concerns, asked questions on their behalf, and ensured they received quality care. At times, the advocate acted as an intermediary between the family and HCPs. Advocates who did not speak Spanish communicated by trying to use some Spanish words or by drawing pictures. Parents stated that these attempts increased their satisfaction with care.

Families had suggestions to improve care and reduce the frequency of incidents. One mother recommended hiring HCPs who are “more sensitive … They need people who can accept people from everywhere.” Another mother advised, “They should be more understanding and pay more attention to us. They shouldn't forget about us just because we don't speak English.”

Discussion

The Mexican American participants in this study are not alone in reporting perceived discrimination by HCPs. In a survey of 42,044 adults living in California, 13% of all Latinos and 16% of immigrant Latinos reported racial/ethnic discrimination in health care settings. ³³ Cristancho and colleagues reported negative patient-clinician interactions described by Latino immigrants that included feeling that physicians did not take enough time to educate or examine them, and did not care about them personally. ¹ Studies of adult patients have found that Latinos receive lower-quality care than whites.^1–5,34,35 Similar results regarding care for children have been reported.^8–18

Language Differences and Use of Interpreters

Numerous studies emphasize language as a central reason for differential treatment, due to miscommunication or inadequate communication.^1–4,35,36 Some parents in this study attributed language as contributing to discrimination. They felt unheard and unsupported, and that some HCPs did not attempt to understand or “connect” with them. Other studies have found that language differences resulted in parental dissatisfaction with the length of time spent with providers.^1,36

The participants' experiences regarding interpreters were similar to those reported elsewhere.^2,4,37 In other studies, Latino families who were not provided with interpreters upon admission or who were only provided interpreters to deliver bad news toward the end of their hospital stays were less-satisfied with their children's care ³⁶ and had poorer understanding of their children's medical conditions ² than families who had access to interpreters throughout their hospital stays.

Because the authors did not interview HCPs, they have no data representing their viewpoint. However, other reports offer credence to these participants' experiences.^2,7,36 In one study, medical residents who did not speak Spanish reported they sometimes or often avoided contact with Spanish-speaking families. ⁶ Residents reported using family members more frequently than hospital interpreters—even though family members were less effective—because of interpreter unavailability, wait times, awkward communication between families and interpreters, and lack of interpreters' medical knowledge. In a survey of pediatricians in states with large numbers of Spanish-speaking patients, 30.9% reported using professional interpreters, 72.6% reported using bilingual family members, 74.7% reported using bilingual staff, and 63.5% reported using bilingual physicians. ⁷ Using family members and bilingual staff as interpreters is problematic^2,5,7,36 because communication barriers may impede the care of dying children and their families. Since 1 in 6 children in the US is Latino, and the growth rate of the Latino population is expected to continue at more than three times the rate of the total US population, ³⁸ training and continuing education must include language proficiency and cultural competence. Availability and use of professional interpreters in children's hospitals should be maximized.

Stereotypical Attitudes and Cultural Competence

Language differences do not fully account for study participants' perceptions of stereotypical attitudes and discrimination. Some parents concluded that some HCPs assumed they were poor and uneducated based on their appearance, and avoided them and their children. HCPs' negative attitudes toward Latino children were reported in two studies of mothers in emergency departments.^11,39

Some families in this study had an advocate who ensured they received quality care. Ngo-Metzger and colleagues found that bilingual, culturally sensitive health care advocates improved patient care for families with limited English proficiency. ³ In pediatric settings, qualified HCPs could be assigned to serve as advocates for families who speak little or no English. Most importantly, HCPs should be educated about cultural norms and how they might affect family-HCP interactions.

Despite increasing efforts to provide culturally competent palliative care, much remains to be done. Providing opportunities for changing HCPs' beliefs and behaviors is essential to developing cultural competence. ⁴⁰ Participants in this study desired respect and equitable care more than culture-specific treatment. HCPs must identify each family's unique, culture-specific characteristics and avoid cultural stereotyping. At the end of life, an individualized approach to care with a focus on quality is paramount for all families, regardless of racial, ethnic, or social background. ⁴¹