Abstract
Patients and families with limited English proficiency (LEP) face a multitude of barriers both inside and outside the hospital walls. These barriers can contribute to difficulty accessing care and understanding/adhering to treatment recommendations, ultimately placing them at higher risk for poorer outcomes than their English-speaking counterparts. The LEP Patient Family Advocate role was created with the aim of improving access, promoting effective communication, and equalizing care for children with cancer from families with LEP. The goal of this mixed methods study was to describe the level of satisfaction and experiences of parents and health care providers who used the LEP Patient Family Advocate while receiving or providing care. Twelve parents and 15 health care providers completed quantitative surveys and an open-ended question about their experiences. High levels of satisfaction were reported. Themes about the role from qualitative responses included its positive effect on communication, trust, and connectedness between parents and staff. Continuity of care and safety were improved, and parents thought the role helped decrease their stress. The LEP Patient Family Advocate has a positive influence on family-centered cultural care.
Keywords
Background
According to the Migration Policy Institute’s National Center on Immigrant Integration Policy, the number of people with limited English proficiency (LEP) in the United States has jumped 80% since 1990, accounting for 25.2 million individuals, or 9% of the total population. Of this group, 66% are Spanish speakers (Pandya, Batalova, & McHugh, 2011). Not surprisingly, this overall trend is reflected in patient populations, presenting today’s health care professionals ever more frequently with the opportunities and challenges associated with providing respectful and effective care across language and culture.
Current Standard of Care for LEP Patients/Families
To eliminate the language barrier and provide awareness and mediation of cultural differences, current best practice for serving LEP populations in the health care system centers on the use of qualified medical interpreters, or when possible, language-concordant providers. While the latter is more of an intermittent luxury and would be difficult to implement as a solution on a broad scale, the former is a well-diffused professional service, readily available in hundreds of languages whether in person, by phone, or via remote video interpreting. The legal requirement of using qualified medical interpreters is backed by Title VI of the Civil Rights Act and detailed in the U.S. Department of Health and Human Service Office of Minority Health’s (2001) report on Culturally and Linguistically Appropriate Services in Health Care, also known as the CLAS Standards. Yet studies have shown that, for reasons ranging from provider time constraints to interpreter availability and accessibility, less than 20% of LEP patients are consistently provided an interpreter (Hsieh, 2015).
Is It Enough?
While using qualified medical interpreters to help bridge linguistic and cultural gaps is now widely (and deservedly) recognized as an indispensable part of providing safe and effective health care to LEP patients and families, studies suggest that access to interpreters alone is not sufficient to ensure effective communication (Abbe, Simon, Angiolillo, Ruccione, & Kodish, 2006). The assumption that it is, not only oversimplifies the extent of the LEP population’s barriers to care but also places unfair expectations on the medical interpreter, expecting far more of him or her than the professional standards of practice allow.
Traditionally, medical interpreting interactions are transient in nature, focusing on the immediate health issues at hand in an isolated health care encounter. Depending on the size of the health care facility and the capacity of its interpreter services department, it is conceivable that an LEP patient could have 25 different interpreters over the course of 25 different visits, or 10 different interpreters during one hospitalization. As a result, there are often limited opportunities to build provider-interpreter and interpreter-patient trust, both of which have been shown to affect the effectiveness of communication across language and culture (Abbe et al., 2006; Fatahi, Nordholm, Mattsson, & Hellström, 2010; Hsieh, Ju, & Kong, 2010).
Medical Interpreters: Necessary Limitations of the Role
For the protection and autonomy of the patient, medical interpreters are bound to a code of ethics and standards of practice that, among other things, heavily promote invisibility and impartiality. For example, interpreters are expected to avoid conversation with patients outside of the interpreted session and are not allowed to disclose information obtained in a previously interpreted visit unless the patient could suffer serious harm as a result (National Council on Interpreting in Health Care, 2005). While the standards of practice do allow some extent of cultural mediation, the inconsistent nature of interpreters’ assignments mean that they are not always afforded a context for the individual’s specific circumstances. Thus, their ability to act as cultural mediators tends to be limited to explaining generalized health beliefs or bits of broadly culturally relevant information to clear up a singular miscommunication. Likewise, medical interpreters are not expected, nor really allowed, to actively participate in care coordination, this despite the fact that many smaller scale practices do not offer the use of a phone interpreter for scheduling and triaging needs. As acknowledged in the National Healthcare Disparities Report published by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (2014), in our highly fragmented health care system, good care coordination can be the difference between comprehension and follow-through versus confusion and nonadherence. This is especially true in the management of chronic conditions and the treatment of complex diagnoses such as cancer, and even more so when working within the complicated world of LEP patients and families.
Pediatric Cancer Disparities
The Midcourse Review of the Healthy People 2010 found that the goals of prevention and eliminating health disparities in the control of cancer are not being met. On the contrary, data have shown an increase in disparity (U.S. Department of Health and Human Services, 2007). In pediatric oncology, there are ethnic and racial differences in both the characteristics and outcomes of pediatric cancers (Bhatia et al., 2002; Worch, Matthay, Neuhaus, Goldsby, & DuBois, 2010). Researchers are now exploring how genetics influences racial disparities seen in cancer outcomes (Xu et al., 2012), as well as how ethnicity and culture may influence adherence behavior in pediatric cancers (Bhatia et al., 2012).
Parental LEP status has also been associated with disparities in children’s health and health care (Flores, Abreu, & Tomany-Korman, 2005). While language barrier could be one contributing factor, the reality for many LEP patients and families is that obstacles they face reach far beyond surface-level linguistic and cultural differences. As a group, they have lower levels of formal education and higher levels of poverty (Whatley & Batalova, 2013). They are also more likely to have lower levels of functional, numerical, and health literacy (Betancourt, Green, & Carrillo, 2012; Kutner, Greenberg, Jin, & Paulsen, 2006). Low literacy, specifically for LEP parents of Latino origin, has been shown to negatively affect parents’ ability to correctly administer medications (Leyva, Sharif, & Ozuah, 2005). Furthermore, lack of legal immigration status presents a significant issue for many Spanish-speaking LEP individuals. According to the Pew Hispanic Center, over 80% of the United States’ estimated 11 million undocumented residents are from Latin America (Passel, 2005). The lack of legal status not only excludes them from most state- and federally funded health insurance plans but also complicates the prospect of stable, gainful employment and access to quality housing. All of the aforementioned factors place LEP status families firmly at the intersection of the “priority populations” descriptors used in the U.S. Department of Health and Human Services Agency for Healthcare Research and Quality’s National Healthcare Disparities Report (2014).
Development of the LEP Patient Family Advocate Role
With an aim to equalize care and to better meet the complex needs of its culturally and linguistically diverse patient families, a large pediatric cancer center in the Upper Midwest developed an innovative role, titled Limited English Proficiency Patient Family Advocate. The role was implemented with one LEP Patient Family Advocate working with the Spanish-speaking population. The advocate is embraced as a member of the care team and is present at nearly every step from diagnosis to eventual discharge and long-term follow-up. The LEP Patient Family Advocate provides accurate medical interpretation within the complexity of the specialty, serves as a cultural resource, and collaborates with families and the health care team (ie, nurses, advanced practice nurses [APNs], physicians, social workers, psychologists, child life specialists, and physical therapists). As part of the team, the LEP Patient Family Advocate helps identify and address potential factors in adherence, safety, and quality of experience, including cultural differences, health literacy, and general system navigation.
LEP Patient Family Advocate Integration of 3 Roles
The LEP advocate maintains 3 separate but mutually beneficial roles during interactions with both health care staff and patients and their families. As with any dual- or multirole position, transparency is essential to avoid confusion that could affect interactions with the advocate and the team or confuse staff and family expectations of traditional role interpreters. The 3 roles are the following:
Role 1: Specialized Medical Interpreter. The LEP advocate is a qualified medical interpreter. Through daily immersion in the treatment protocols, lab values, dual medication names, research study consents, and common tests and procedures associated with cancer and blood disorders, the role offers a level of fluency not only in the complex concepts and terminology but also the family experience of battling childhood cancer.
Role 2: Cultural Liaison. The LEP advocate provides expertise and guidance to the health care team in the target-language’s culture(s), and to the family in the dominant U.S. culture and the culture of Western medicine. Close contact over time and the perspective of a participant observer allow for a level of cultural mediation more specific to each family’s unique culture and needs.
Role 3: Healthcare Systems Advocate/Adjunct Case Management. The LEP advocate is readily available to assist the health care team with internal and external coordination across the continuum of care. Patient’s families are evaluated for level of health literacy and self-advocacy skills, and the LEP advocate follows through to the extent appropriate, on a continuum from advocating on their behalf to modeling and teaching self-advocacy skills. This role collaborates with nursing to develop culturally and linguistically appropriate education materials, including interventions sensitive to individual families’ literacy and education levels, such as lower literacy (color-coded) and higher literacy (word-based) calendar systems. The LEP advocate also identifies cultural and situational barriers to adherence/compliance and actively works with the health care team to help families overcome them. These may include identifying local resources and support, assisting in the coordination of transportation for both scheduled and unforeseen appointments, coordinating appointment schedules across departments/facilities, and acting as a first point of contact for the family, “triaging” issues as they arise.
In developing a framework on professional relationships, Morse focused on interactions between nurses and patients. Four types of mutual relationships may occur depending on the duration of time and the needs of both the patient and the nurse. These include a clinical relationship, a therapeutic relationship, a connected relationship, or an overinvolved relationship (Morse, 1991). This model can be adapted to the LEP Patient Family Advocate role, with the nature of the mutual relationship being defined as “connected.” This means that the relationship continues over a lengthy period of time with intensive and close interaction with the professional advocating for the patient’s needs. Instead of focusing solely on treatment issues, this role ensures that the patient’s and family’s concerns are met. The comparison and contrast between the characteristics of the relationships of the LEP Patient Family Advocate and the traditional interpreter role can be seen in Table 1.
Comparison of Patients’ and Families’ Relationships With the LEP Patient Family Advocate and the Traditional Medical Interpreter. a
Abbreviation: LEP, limited English proficiency.
Adapted from Morse (1991).
Although informal feedback from patients, families, and staff on the LEP Patient Family Advocate was positive, a more formal evaluation of the role was conducted as a research study. The focus was on the Spanish-speaking LEP population within the cancer and blood disorder program. The purpose of this study was to describe the level of satisfaction and experiences in parents who used the LEP Patient Family Advocate while receiving care for their child with cancer, and in oncology staff who were providing the care.
Method
In this mixed methods study, a quantitative descriptive questionnaire was used to measure satisfaction. Qualitative data were collected using a single open-ended survey question that was included at the end of the questionnaire. The qualitative data provide clarification and elaboration of the quantitative outcomes (Wilkins & Woodgate, 2008).
Participants
A convenience sample of parents and staff were recruited to the study. Parents were invited to participate in the study if they were (a) the primary caretaker of a child with cancer who had received care in the oncology program at the study site for at least 2 weeks, (b) spoke Spanish as their primary language, and (c) had used the services of the LEP Patient Family Advocate. Health care professionals (medical doctors [MDs], pediatric nurse practitioners [PNPs], or registered nurses [RNs]) who had used the LEP Patient Family Advocate while providing care to patients from Spanish-speaking LEP families in the outpatient oncology clinic were invited to participate by completing a staff questionnaire.
The study was approved by the institutional review board at the study site. Over the 3-month study enrollment period, all of the families meeting the eligibility requirements listed above were invited to the study during a routine outpatient clinic visit. To invite parent(s) to participate in the study, a coinvestigator who was an APN used a study interpreter (not the LEP Patient Family Advocate) to explain the study. The APN explained that the person who usually interprets for them (the advocate) was not being used to keep their answers confidential. It was also explained that only group data and deidentified comments would be shared. A copy of the written consent (in Spanish) was given to the parents. If the parent did not read, the Spanish interpreter read the consent to them. If the parent agreed to participate and signed the consent, the Spanish interpreter read the questionnaire to the parent and wrote down their answers during the same clinic visit.
Health care staff (MDs, PNPs, and RNs) were invited to the study through a written letter with the questionnaire attached. With institutional review board approval, a separate written consent was not obtained. Consent was inferred if the person returned a completed questionnaire.
Measurement
Questionnaires for the parents and health care staff were developed by the investigators. Four APNs reviewed the questionnaires for face and content validity. The parent questionnaire was developed (not translated) in Spanish to create a syntax that would sound more natural than a translation from a typical questionnaire in English might. The Likert scale wording was developed to be culturally appropriate. When asked a question with graded responses (eg, somewhat agree, agree, strongly agree), immigrant Latino parents tend to answer “yes” or “no,” without attention to gradation (D’Alonzo, 2011). Therefore “yes” and “no” were incorporated into each of the gradations. The paper version of parent questionnaire was in Spanish so that there was consistency when it was read to the parent subjects by the study interpreter. An open-ended question was asked at the end of the questionnaire. For parents, the interpreter read the question, “What else can you tell us about your care in the oncology clinic? Do you have any stories?” and then wrote down the parent’s verbatim response in English as the parent spoke. Health care staff received the following request at the end of their questionnaire: “Please write below to share any of your individual experiences with your Spanish-speaking patients and families and the interpreter.”
It is important to note the use of the word “interpreter” within the study, not only in the questionnaires themselves but also in both staff and parent responses. The LEP Patient Family Advocate role evolved from what was initially the dedication of a qualified Spanish medical interpreter to the cancer and blood disorders program, with the aim of providing increased consistency and availability of the interpreter for patients and families going through cancer treatment. Over the course of several months, it became clear that there were gaps and barriers beyond language standing in the way of effective communication and treatment adherence, and discussions led to expanding the role and changing the title. At the time this study was conducted, the new title and role description for the LEP Patient Family Advocate had just been finalized and therefore was not yet fully integrated into everyday discourse. For staff and parents alike, the “advocate” was still often referred to as “the interpreter.”
Data Analysis
Descriptive statistics were used to calculate the mean response score for each quantitative question. For the qualitative questions, the researchers identified and agreed upon themes and used them to independently code the responses (O’Cathain & Thomas, 2004). Deidentified quotes were selected that illustrate the theme.
Results
Sample
Parents of 12 different patients agreed to participate in the descriptive study. There were no refusals. Ten of the parents had children receiving treatment for acute lymphoblastic leukemia, while 2 parents had children undergoing treatment for melanoma and medulloblastoma, respectively. The children had been undergoing treatment for a mean time of 2.1 years. Detailed demographic information was not requested because we wanted to focus the time spent collecting data on the questionnaire about their cancer experiences in our institution.
Among the health care staff, 15 surveys were returned for a response rate of 79%. Roles of the responders included 5 physicians, 3 pediatric nurse practitioners, and 7 Registered Nurse case managers. Additional background information was not requested from respondents.
Questionnaire Results
In Table 2, the Spanish version and English translation of the survey questions are listed with the wording from the Likert scale and the mean response score and range for the group. Most scores were 4.5 or higher on a scale of 1 to 5, with 5 being most favorable. The lowest mean score of 4.2 was in response to the question, “When your child was diagnosed, did you feel satisfied with the explanation that you received about your child’s diagnosis?” The highest score of 4.8 was for the question, “When your child was diagnosed, did you feel satisfied with the explanation that you received about the treatment he/she would receive?”
Parent Experience With the LEP Patient Family Advocate (N = 12).
Abbreviation: LEP, limited English proficiency.
In Table 3, the mean response score and range for the health care staff responses are listed for each Likert agreement scale statements. Overall, the mean scores are high on the scale of 1 to 5, with 5 being the most favorable. Staff reported a mean score of 5 (strongly agree) to the statement, “I feel that the LEP Patient Family Advocate is an integral member of our team.” The question, “I believe that my Spanish-speaking patients and families feel comfortable calling from home to ask questions,” had the lowest mean score of 4.7.
Health Care Staff Experience With the LEP Patient Family Advocate Role (N = 15).
Abbreviation: LEP, limited English proficiency.
Responses to Open-Ended Questions
In response to the open-ended parent question, “What else can you tell us about your care in the oncology clinic? Do you have any stories?” parents’ overall responses were very positive. Health care staff also responded positively to the staff question, “Please write below to share any of your individual experiences with your Spanish-speaking patients and families and the LEP Patient Family Advocate.” The responses from both groups not only affirmed the quantitative results but also provided a deeper insight into the experience of caring for and being cared for during cancer treatment when there is a potential language barrier. Six themes were identified from the qualitative data, and quotes illustrating these themes are provided.
Continuity of Care
This theme was identified by the health care staff. They recognized that the LEP patients and families were at risk for fragmented care, and the presence and actions of the LEP Patient Family Advocate helped address that risk. Staff shared, “Having her have an established relationship with a patient and family makes things go smoother.” Another staff person wrote, “When I am covering for a patient’s primary nurse, the LEP patient/family advocate can help in assuring a continuum of care as she is their ‘primary’ interpreter.”
Decreasing Stress and Burden
Continuity in care improved communication and also decreased parents’ stress. A parent noted that (Before) it was more difficult to explain our worries regarding the child’s health every time a new interpreter came in. . . . (Before), when I had lots of doubts and questions regarding my son’s illness, we had to wait until there was an interpreter available to help us. Things were explained to us well, but what would happen was that at the time, doubts would suddenly come to us, and that was when we needed an answer. But now, personally I feel more comfortable and safe.
Patient Safety
Safety is a priority in oncology care for all patients and parents. Both staff and parents felt that the LEP Patient Family Advocate role enhanced the safety of complex chemotherapy treatment and created safer systems for families caring for their child at home, such as a medication calendar system available in both higher literacy (word-based) and lower literacy (color-coded) versions. One parent explained, “I feel safer when I have to give the medication and I feel I can better care for my son.” A staff member wrote, “I am truly confident our Spanish speaking patients are receiving the correct information.”
Trust and Connectedness
These are important foundations for creating effective relationships and communication between health care providers and families, and between health care providers and the LEP Patient Advocate. Parents expressed trust in the LEP Patient Advocate’s competence as an interpreter, which helped them feel understood, stating, “She was concerned that I understood everything I had many doubts and questions which she interpreted just as I said them. That is why I feel I can express myself like if I were personally speaking to the doctor.”
Staff identified the benefits of a consistent, specialized interpreter, sharing that “having a dedicated interpreter helps families feel connected and help us feel more comfortable with the information that is being translated.” Staff also recognized that the social conversations that help develop trust are easily lost when there is a language barrier, but the LEP Patient Advocate helped create that level of interaction. Staff wrote, “When the family doesn’t speak English, you miss getting to know the little details that help in providing the best care. Now we are able to bridge that gap—Spanish-speaking families get the same outstanding care.”
Communication
Parents recognized that the LEP Patient Advocate helped them be understood and enhanced the ability to communicate about their child. One parent expressed the essence of communication advocacy that often falls outside the traditional interpreter’s role and ethic, stating, “She explains the things she interprets very well and she asks me if I understand. It doesn’t matter if the list of questions or instructions that I need written in Spanish is very long, she does it anyway.” Staff recognized that parents with language barriers may find it challenging to access different services available to them when the need arises outside of their clinical encounter when an interpreter is present. They expressed the benefit of having a language-concordant team member to more easily access important resources: “She coordinates very efficiently all aspects that the family may need (like with the psychologist, social worker and medical issues).”
Respect
Parents and staff recognized that the LEP Patient advocate role facilitated effective communication, which also demonstrated respect for patients and families. “We had never been treated as well in other hospitals as we have been here,” shared a parent. A staff person noted, “This role has come close to equalizing care for our Spanish speaking families. We are now able to focus on holistic care for them.”
Discussion
The LEP Patient Family Advocate is an innovative role that was created in response to the need to address gaps in communication that run deeper than language in order to better support patients and families with LEP throughout the trajectory of their treatment. Feedback collected through surveys and open-ended questions demonstrates a high level of satisfaction with the role and a positive impact on the quality of care provided to this population of families.
The LEP Patient Family Advocate role is unique in its approach to serving LEP patients in a pediatric oncology setting. As such, this appears to be the first study of its kind. However, there are several previous studies describing the barriers LEP patients face, as well as the aspects of cross-cultural communication that providers, patients, and medical interpreters find challenging. According to these findings, the LEP Patient Family Advocate appears effective in mitigating many of these barriers and perceived challenges.
Consistent with a 2010 study exploring the dimensions of provider-interpreter trust, staff in this study looked favorably upon their established patterns of collaboration with the advocate, their sense of having shared goals, and their confidence in the advocate’s interpreting abilities (Abbe et al., 2006; Hsieh et al., 2010). Prior patient/parent interview-based studies have identified problems of distrust, fear, and lack of confidence in the completeness and accuracy of the interpreter’s rendition of the information, as barriers to effective communication (Abbe et al., 2006; Fatahi et al., 2010). In this study, repeated interaction appeared to build parents’ trust in the faithfulness of the advocate’s interpretation, and they reported feeling comfortable, as opposed to fearful, in his or her presence and expressed satisfaction with the delivery of the information. In one study of 100 LEP parents of Latino origin, only 22% of participants correctly dosed a test bottle of medication labeled in English, and only 29% were able to correctly answer all questions about a Spanish-language Drug Information Sheet (Leyva et al., 2005). Another study found high levels of self-reported confusion and poor understanding of prescribed medications among LEP adults (Wilson, Chen, Grumbach, Wang, & Fernandez, 2005). Yet with the culturally and linguistically sensitive assistance of the LEP Patient Family Advocate, the parents in our study reported high levels of confidence that they were correctly administering their children’s medications. This confidence was echoed in staff responses.
A potential limitation of this study is that the evaluation focused on the role carried out, at the time, by one individual. Study participants’ responses may have reflected their personal feelings of liking the person in addition to evaluating the role itself. Since that time, our program has expanded the role to include a second LEP Patient Family Advocate who works with our Hmong patients and families, as Minnesota has the second largest Hmong population in the United States (Pfeifer, Sullivan, Yang, & Yang, 2013). Larger studies that include multiple sites as well as multiple cultural groups are needed to provide a higher level of evidence of the positive outcomes of the role.
Future research is also needed to evaluate the impact of this role beyond patient/family and staff satisfaction. Outcomes of future studies could include adherence to treatment, including medication and appointment adherence, cost-effectiveness, and impact on overall survival. Further inquiry into how social desirability of the LEP Patient/Family advocate influences family satisfaction is also merited.
Conclusion
Both for the safety of patients and the protection of health care providers, current best practice for hospitals and clinics serving patients and families with LEP is to provide them with qualified medical interpreters. With the recognition that language is often not the sole barrier LEP families face, the integration of an LEP Patient Family Advocate into a pediatric oncology care team is an innovative approach to promoting high quality care that goes above and beyond the standard for a population that otherwise may risk falling through the cracks.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.