Perceptions of Multiple Sclerosis in Hispanic Americans - International ...

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International Journal of MS Care Preprint

Perceptions of Multiple Sclerosis in Hispanic Americans: Need for Targeted Messaging

Ozioma Obiwuru, MS; Sarah Joseph, MS; Lihua Liu, PhD; Ana Palomeque, BS; Leslie Tarlow, NP, MSN; Annette M. Langer-Gould, MD, PhD; Lilyana Amezcua, MD, MS

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From the Department of Neurology, Keck School of Medicine (OO, SJ, AP, LT, AMLG, LA),

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and Division of Biostatistics, Department of Preventive Medicine, Immigration Health Initiative (LL), University of Southern California, Los Angeles, CA, USA; and Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, USA (AMLG). Correspondence: Lilyana Amezcua, MD, MS, University of Southern California, MS

Comprehensive Care Center, 1520 San Pablo St., Ste. 3000, Los Angeles, CA 90033; e-mail:

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[email protected].

Running Head: Perceptions of MS in Hispanic Americans

DOI: 10.7224/1537-2073.2015-081

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© 2016 Consortium of Multiple Sclerosis Centers.

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Practice Points 

Hispanic culture is defined by strong cultural beliefs where illness may be perceived to arise from strong emotions.

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Members of the Hispanic MS Registry at USC who participated in semistructured interviews and focus group sessions were found to have strong sociocultural perceptions

To improve MS well-being in Hispanic populations, ideal interventions should increase

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

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of MS, and MS causation beliefs differed by place of birth and age of immigration.

MS awareness and address cultural idioms that have the potential to negatively impact

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MS care.

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Abstract Background: Illness perceptions have been reported to be important determinants of multiple sclerosis (MS) well-being. Hispanic culture is defined by strong cultural beliefs where illness is often perceived to arise from strong emotions. Understanding the perceptions of MS among Hispanic Americans may provide a better understanding of cultural barriers that may exist. The

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purpose of this study was to describe Hispanic American perceptions of MS.

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Methods: We gathered information from semistructured interviews, focus groups, and

participant responses from the USC Hispanic MS Registry. This information was then stratified into a matrix of environmental, biological, and sociocultural determinants. Differences were examined by place of birth, treatment preference, and ambulatory difficulty. Logistic regression was used to investigate the relationship between sociocultural perceptions, place of birth, and

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ambulation.

Results: Most participants were female (n = 64, 61%), US born (n = 64, 61%), and on treatment for MS. Participants cited environmental and sociocultural perceptions with significant differences noted by place of birth. Sociocultural factors such as strong emotions were almost four times more commonly perceived among immigrants compared to US born participants

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(adjusted: OR 3.66; 95% CI, 1.12-11.90; P = .03). Male, low education, and low income participants were also more likely to perceive MS as a result of strong emotions, but these were not statistically significant.

Conclusions: Hispanic American perceptions of MS differ by place of birth, with reports of cultural idioms more common among immigrants, which could impact disease management. These findings may be useful in designing educational interventions to improve MS well-being in Hispanic populations.

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INTRODUCTION Multiple sclerosis (MS) is a complex inflammatory, demyelinating, and progressive disorder of the central nervous system that negatively impacts quality of life and disproportionately affects women. The number of Hispanics with MS in the United States is expected to increase, given estimates that the proportion of Hispanics in the US population will rise from 14% in 2005 to

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29% by 2050.1 Despite increases in MS diagnoses among the Hispanic population and increases

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in available MS educational material to the population in general, observations suggest that

Hispanics with MS lack awareness of MS and its treatments.2-4 We previously reported that Hispanics with MS who immigrated at a later age to the US are twice more likely to have ambulatory disability compared to US born Hispanics with MS.5 Illness perceptions have been reported to be important determinants of MS well-being, and place of birth could play an

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important role in illness perceptions among Hispanics with MS. Our previous findings may reflect differences in social, environmental, and cultural factors that may act as barriers for accessibility and utilization of health services. Failure to recognize illness perceptions in this population could significantly impact short- and long-term MS disease management. An individual’s perception of illness is a complex, multidimensional process comprising

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cognitive representations or beliefs that patients have about their illness.6 Research supports illness perceptions to be important determinants of behavior, and they have been associated with a number of significant outcomes, such as treatment adherence and functional recovery.7-9 Studies of chronic conditions such as diabetes and stroke within Hispanics have shown perceptions of illness to differ by ethnicity and to be significant factors affecting self-care in Hispanics.10-13 A recent study found stroke awareness to significantly differ between Hispanics as compared to non-Hispanic whites, and perceived barriers were part of this difference.14 This

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study also suggests that Hispanic patients report less control over their health because of perceptions, which in turn limit their participation in interventions. In addition, acculturation and health literacy have been reported to play an important role in illness perceptions among Hispanics.15 Recently, illness perceptions have been described in white populations to be important determinants of MS treatment preference and management.16-20 However, perceptions

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of the cause of MS have not been particularly studied among Hispanic Americans with MS.

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Understanding perceptions of illness in Hispanics with MS could nurture the development of

culturally competent programs, identify gaps in health-care efficacy, and provide an avenue for future health interventions to reduce ethnic and racial disparities in MS.

Hispanic culture is characterized by strong values attached to family and cultural

beliefs.21 Susto (fright), ataque de nervios (attack of nerves), and tristeza (sadness) are cultural

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beliefs in which disease is thought to arise from strong emotions.12,22 These illness perceptions can have a strong influence on outcomes, coping strategies, behaviors in chronic illnesses, and self-management such as adherence and preferences of treatment.23-25 The theoretical framework of the present investigation is rooted in two observations. First, health literacy affects adults in all racial and ethnic groups with a greater proportion of Hispanics (65%) being affected

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compared to 28% of non-Hispanic whites with basic or below basic health literacy.26 Second, perceptions of disease can be modified by improving understanding of existing perceptions, which can then be used to modify health literacy. The present study explores the beliefs about MS as a result of MS focus groups in Los Angeles, California, intended to promote MS health literacy among underserved Hispanics.

METHODS

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Study Population We recruited participants who self-identified as Hispanics with MS and entered the Hispanic MS Registry at USC in Los Angeles County between December 2014 and August 2015. “Hispanic” was defined using the NIH criteria for minority inclusion in research as a person who self-identifies themselves as Hispanic or Latino of Cuban, Mexican, Puerto Rican,

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South or Central American, or other Spanish culture or origin, regardless of race.27 The Hispanic

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MS Registry is a collection of prevalent and incident cases of MS that recruits in-person from two MS specialty clinics at USC; it is fully described elsewhere.28

All study participants were recruited at the time of enrollment into the Hispanic MS Registry (n = 105). After collecting basic demographic and clinical information, each participant was asked the same open-ended question: “Are there any significant events you would like to

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report that led to your MS onset?” Immediately following enrollment, the majority of the study participants (n = 75) completed a one-on-one, semistructured interview to further elaborate on their perceptions of MS. The remaining participants (n = 30) agreed to attend one of three focus group sessions, particularly useful in enabling individuals to clarify and voice their opinions. None of the participants were exclusively Spanish-speaking and no participants were

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excluded. In fact, all were consented in English despite the fact that some participants preferred speaking Spanish during the focus group sessions. Any patient who is consented in Spanish is usually considered at-risk for a potential language barrier, and in the USC Hispanic Registry that rate is currently 17%. Because all consent was obtained in English, the potential of encountering language barriers among our study participants was considered to be minimal. This study was approved by the USC Institutional Review Board, and all patients gave informed consent prior to participation.

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Data Collection Data collection took place between December 2014 and August 2015 during registry enrollment, one-on-one semistructured interviews, and focus group sessions. A trained interviewer and coordinator of the USC Hispanic Registry (A. Palomeque) conducted all

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semistructured interviews. The local chapter of the National Multiple Sclerosis Society organized

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three 90-minute focus group sessions at the Los Angeles County medical facility’s Wellness

Center. The same bilingual (Spanish/English) trained staff facilitated each focus group meeting: NMSS Wellness Center director (M. Willard), coordinator of the USC Hispanic Registry (A. Palomeque), MS neurologist (L. Amezcua), and MS nurse practitioner (L. Tarlow). Before each discussion, the facilitators explained to the participants that information gathered from the

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semistructured interviews and focus groups would be used for research purposes.

To gain insight into participant perceptions of the cause of MS, analysis of the

information was made following principles of qualitative research.29 Information collected from each participant included: year of diagnosis, first symptom, type of MS, perception of walking (fully ambulatory or not), educational level, type of clinic visited (public vs. private), and type of

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MS treatment delivery (oral vs. injection vs. infusion). Clinical variables such as diagnosis of MS and medication were confirmed via medical record. When asking the open-ended question involving perceptions of MS causation, the interviewer read the question exactly as it appeared in the enrollment questionnaire to minimize ascertainment bias. From participant responses, including in-depth information gathered from the one-on-one interviews and focus group sessions, a matrix of the main topics was created for the collected perceptions of MS (ie, biological, environmental and sociocultural) (Figure 1). Using the matrix, we independently

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identified and coded key words and common themes that appeared throughout the interviews and responses. To maintain the richness of the information obtained during the interviews, our bilingual research staff translated and presented direct quotes in the results section. Although all participants may not have repeated the specific words, the meaning was expressed and widely affirmed between researchers. In cases where a Spanish word had no suitable English translation,

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we used the Spanish word and described its meaning in the text (ie, susto).

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Each response was captured as is by hand and electronically entered into CAFÉ-

Common Application Framework Extensible electronic framework, and later independently coded using Microsoft Excel®. After a literature review of other chronic illnesses, data collected from the focus groups and in-depth interviews were used to develop a conceptual framework. This led to the stratification of responses into “yes” or “no” under environmental, sociocultural,

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and biological categories. In order to confirm the credibility of the results and avoid selective perceptions, unclear answers were discussed during the focus group sessions and within our research group when possible.

Statistical Analysis

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A descriptive cross-sectional design was used for this research. All analyses were

conducted in Hispanic MS cases with complete answers to the questionnaire, age of immigration, and birthplace information (100%). Ambulatory difficulty was self-reported. Statistically significant differences stratified by place of birth were identified using chi-square tests for binary or categorical variables (ie, MS type and gender) and t tests for continuous variables (ie, age at onset, age at diagnosis, and disease duration). We used multivariate logistic regression to evaluate the association between place of birth (US born or immigrant), age of immigration

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(restricted to immigrant), and sociocultural perceptions that had an emotional origin (ie, susto, tristeza). We adjusted for gender, educational level, and income (less than or greater than $40,000 annually). All statistical analyses were performed using SAS 9.3 and a priori α-level of .05 was used to declare statistical significance.

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RESULTS

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Out of the 105 responders (Table 1), most were female (61%), were US born (62%), had relapsing forms of MS (89%) with a disease duration of 5.8 years (SD: 6.6), and had at least some college education or more (60%).

Stratified by place of birth, US born participants were significantly younger at age of first MS symptoms and diagnosis. A greater proportion of the US born group identified with a

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Mexican background, while a greater proportion of the immigrant group identified with a Central American background. There were no significant differences seen by income, level of education, disability status, or type of delivery in treatment.

Beliefs About Perceived Causes of MS

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After the independent analysis of each answer provided, a matrix was created where

answers were matched by three themes: environmental, sociocultural, and biological (Figure 1). There were no differences seen in the reported perceived causes of MS when stratified by gender.

Environmental

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In general, the majority of the participants identified environmental factors as the perceived cause of MS (86%), such as “too much stress” and “poor diet.” One participant stated, “I was working two jobs and I was too stressed out, no time to relax.” Another participant emphasized the impact of “family stress and too much drama at home . . . we Hispanics overreact.” Many participants cited food habits such as “eating fast food,” “not having time to cook,”

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“the food in the US,” and “being overweight.” Although mentioned less frequently, a few

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participants expressed that “working under hot weather” and “steam” likely precipitated their MS. In the end, poor diet and overworking were identified as the most commonly perceived

causes of increased susceptibility to MS. Other identified causes included history of infectious mononucleosis and vitamin D deficiency.

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Sociocultural

In addition to the environmental factors, many participants expressed sociocultural

factors such as supernatural events and experiencing strong emotions (57%) that preceded the onset of their MS. The most commonly cited emotional state was susto (16%), which is interpreted as fright or surprise in the English language. One participant stated: “I think it was

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because I almost drowned as a child . . . since then I have felt poorly and I think this is due to ‘un gran susto’” (immigrant). Another discounted the possibility that MS could have a genetic component with the following statement: “My doctor told me that MS could be a result of genes. There is no one in my family with MS. . . . I checked. I really think I got MS because my mother dropped me as a child” (US born).

In the example presented below, a participant contrasts the cause of MS identified by her doctor with her own belief about the cause of MS (sadness, or tristeza): “When we lost our son

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we were also having domestic problems. I am certain I was very sad, then I developed MS” (immigrant). In this additional example, the participant discounts a biological cause and instead cites a gift from God: “I was in church when I lost my eyesight, I know God gives different gifts to each. . . . I trust in God.”

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Biological

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Few participants reported biological or hereditary reasons for MS causation (18%).

Matrix of Disease Perceptions by Place of Birth

When examining perceptions by place of birth (Figure 2), there were no significant differences by perceived environmental encounters (93% vs. immigrant 81%, P = .10). However,

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stress was more commonly cited as a cause of MS among the US born participants (91% vs. immigrant 68%, P = .03). Sociocultural factors were more frequently reported in the immigrant group (P = .02), with the perception of susto being the most commonly perceived cause of MS in immigrants compared to US born (27% vs. US born 7%, P = .05). Tristeza was the second most common perceived cause of MS; however, tristeza was not found to be significantly different by

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place of birth (immigrant 12% vs. US born 10%, P = .89). Perceptions of biological causes were not found to be different by place of birth (P = .20).

Treatment Preference and Reported Ambulation by Perception Category There were no significant differences between perception categories and treatment

preference (Table 2). However, a greater proportion of patients who reported biological perceptions were on oral or infusion therapy. Interestingly, being on no treatment was more

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commonly reported among those who reported perceptions associated with sociocultural factors. In addition, individuals who reported difficulty ambulating were more likely to be on treatment.

The Risk of Strong Emotions in Hispanic Immigrants Because we saw significant differences by place of birth when examining the belief that

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MS is caused by strong emotions, we investigated the risk of these perceptions by place of birth

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(immigrant versus US born) using multivariable logistic regression. After adjusting for gender, education, and income, being an immigrant significantly increased the risk of believing an

emotional perception to be the cause of MS (OR 3.66; 95% CI, 1.12-11.90; P = .03). Male, low education, and low income participants were also more likely to perceive MS as a strong emotion, but these were not statistically significant (Table 3A).

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In a restricted model, we further investigated the perception of strong emotions as the

cause of MS within the immigrant population using age of immigration. In this multivariable logistic model, older age of immigration is significantly associated with the risk of perceiving MS to be the result of strong emotions (Table 3B).

We then investigated whether perceiving MS as a result of strong emotions would

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increase the risk of ambulatory difficulty as reported by the patient. In this model, the risk of ambulatory problems is significantly greater for those with longer disease duration, but not for those who report strong emotions (adjusted: OR 1.63; 95% CI, 0.51-5.17) (Table 4).

DISCUSSION

We used data from both focus groups and related questionnaires of Hispanic adults with MS residing in Southern California, specifically within Los Angeles County, to examine beliefs

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about the cause of MS. The findings from this study suggest that perceptions of the cause of MS differ among Hispanics, and place of birth and age of immigration may influence these perceptions. In addition, data from this sample suggest that participants draw on two main belief systems to describe the causes of MS: stress and sociocultural factors that derive from strong emotions. Culturally related emotions such as susto and tristeza were found to be the most

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commonly perceived causes of MS in Hispanics, even among the educated and those living in

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the US since birth. This is not surprising, as both susto and tristeza are common cultural idioms of distress reportedly used by Hispanics to explain clinical presentations in other diseases that affect them such as type 2 diabetes and stroke.7,10,21 In addition, both place of birth and age of immigration in the immigrant population were found to be significant factors in the risk of perceiving MS to be the result of strong emotions.

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Our findings about the causes of MS are consistent with health literature on other chronic

medical conditions prevalent in Hispanic populations.25 While our study did not focus on comparing to non-Hispanics, a recent stroke study found that significant differences exist by race/ethnicity and that perceptions of illness are significant factors affecting self-care, particularly among Hispanics.14 Negative and unrealistic perceptions of illness have been shown

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to impact symptoms and self-management of disease, which could hinder clinical interventions and outcomes in this population.30 The emphasis of stress as a cause of MS and the value attributed to healthy eating and stress reduction suggests that Hispanics also believe in espirtism, whereby health is defined synergistically as a continuation of mind, body, and spirit.31,32 Valuing leisure, a healthy diet (eg, concern with fast food), and stress reduction were common comments made by many of the study participants, suggesting that some cultural beliefs could actually help with disease management when emphasized.

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Previous investigations of Hispanic explanatory models of chronic conditions such as diabetes suggest that it is common for Hispanics to believe that strong emotions make the body susceptible to illness.9,12 Studies have shown that when asked more specifically, most can point to a specific episode of susto, or a profound emotional experience, that precipitated the disease. These perceptions have the potential to translate into negative patient illness perceptions, which

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have been reported to increase the likelihood of future disability and symptoms in chronic

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medical conditions such as asthma.33 Such beliefs warrant the development of a more

comprehensive explanatory model of disease and require that treatments be tailored to overcome these barriers and increase awareness.9

While limited data exist in MS, there has been recent research suggesting that MS wellbeing is primarily predicted by patients’ own illness beliefs. Bassi and colleagues also showed

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that beyond the beliefs of the individuals affected with MS, the caregivers’ well-being was primarily predicted by their own beliefs as well.17 General self-efficacy, perception of treatment control, and realistic MS timeline perspectives have been reported to be important correlates of self-management in MS more so than clinical variables.19 Although our sample varied with regard to level of education, each participant had a minimum of a high school education.

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Interestingly, reports of obtaining some college education were higher than expected, suggesting that although most MS participants were educated, they have culturally rooted perceptions that could be factors in determining well-being. The findings that place of birth and age of immigration influence the perception of MS as

a result of strong emotion indicate that MS outcomes in Hispanics could be affected by cultural factors. Those most likely to suffer from susto could be less acculturated. We have previously demonstrated how place of birth and age of immigration relate to disease severity in Hispanics

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with MS, where older age immigrants incur twice the risk of ambulatory disability compared to US born.5 However, birthplace is unlikely to be an accurate estimate of sociocultural integration, and future studies aimed at health promotion in MS will need to integrate better measures that account for individual integration into society (ie, acculturation scales). These findings have some relevance for public health and clinical practice. Because of

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the growing scientific interest in identifying effective health interventions to reduce ethnic and

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racial health disparities, these findings may have significant implications for the clinical care and self-management of MS in Hispanics. Our findings support the need to promote awareness among Hispanics with MS about the biological basis for MS. Targeted messaging that employs media outlets popular in this population, such as a short film or “mini-telenovela,” could be especially effective in addressing the perceptions and possibly the general lack of MS awareness

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among Hispanics. Similarly, increasing the physician understanding of sociocultural factors that may be present in a patient’s explanatory model of disease may help develop approaches of MS care that more holistically treat Hispanic patients with MS.

There are limitations to this cross-sectional study. As qualitative studies in MS are few

and none have involved Hispanic Americans with MS, potential limitations regarding adequate

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sample size must be acknowledged. Nevertheless, we performed a review of the literature and followed conduct procedures used in qualitative research to guide our determination of sample size. Along with being well-sized for promoting interaction from participants and conducive to obtaining meaningful feedback, our sample size was considered large enough to assure that most (if not all) of the participants’ perceptions were explored. Data collection was conducted on a convenience sample of participants likely to attend focus group sessions and who were of mostly Mexican and Central American background, limiting its generalizability. We recognize that there

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are considerable differences in health beliefs and practices across subgroups of Hispanics, and we were not able to explore such differences in this study. Nevertheless, this study is highly representative of Southern Californian diversity and illustrates a potentially important avenue for the study and application of sociocultural factors in the examination of MS in Hispanic American populations. While studies about cultural beliefs provide insight into the everyday experiences of

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people with MS, more research is needed to examine how such experiences may contribute to the

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self-management and mediation of MS disease severity and progression. In addition, this study

should not be used to generalize cultural beliefs or illness perceptions of MS in all Hispanics, but rather used for sensitization about potentially relevant issues for Hispanics with MS.

CONCLUSION

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The present study suggests that Hispanics with MS in Southern California strongly differ

in what they perceive to be the cause of MS, and perceptions are further influenced by place of birth and age of immigration. Future studies and interventions should focus on identifying and addressing misconceptions, as well as increasing awareness of MS in Hispanics and their providers through tailored health education interventions with the goal of improving the

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provision of patient-centered care. The utilization of culturally tailored messaging with relevant characters and contextual narratives that reflect the concerns and diverse beliefs of Hispanic Americans could be an effective means of transmitting important MS information with hopes of preventing disability.

Acknowledgment: The authors would like to thank Jose Aparicio for his contribution to data collection; all study participants; Marisela Robles, MPH, Cecilia Patino-Sutton, MD, PhD, and

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Katrina Kubicek, PhD, from the Southern California Community Leadership in Clinical and Translational Science Institute (CTSI); and Mercy Willard, MPH, from the National Multiple Sclerosis Society for facilitating the focus groups.

Financial Disclosures: Dr. Amezcua has received honoraria for advisory boards and investigator

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initiated grant support from Acorda, Biogen, Genzyme, and Novartis. Dr. Langer-Gould has

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received research funding from Biogen Idec, Hoffman-La-Roche, National Institutes of Health, and National Multiple Sclerosis Society. The other authors have no conflicts of interests to disclose.

Funding/Support: This work was supported by National Center for Advancing Translational

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Sciences, National Institutes of Health (NIH), through Grant Award Number KL2TR000131 and Southern California CTSI community engagement. The funding agencies had no role in the study design and conduct; data collection or analysis; or manuscript preparation.

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Figure Legends

Figure 1. Matrix of reported perceptions about the cause of MS among Hispanic study participants

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Figure 2. Perceived causes of MS in Hispanics by place of birth

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Significant differences were seen in the proportion of sociocultural factors reported between US born and immigrant (P = .02). Stress as an environmental factor was cited by 91% of US born participants. Susto (fright) was the most commonly cited sociocultural factor among immigrant

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participants (27%).

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Table 1. Baseline characteristics of Hispanics with MS (n = 105) US-born

Immigrant

Overall

n = 64

n = 41

n = 105

Female, No. (%)

42 (66)

22 (54)

64 (61)

.22

Age, ya

37.2 (11.7)

41.3 (12.6)

38.8 (12.2)

.09

Age 1st symptom, ya

29.4 (11.4)

35.2 (11.2)

31.6 (11.6)

.01

Age at diagnosis, ya

32.0 (11.7)

37.4 (12.3)

Age of immigration, yb MS type, No. (%) Relapsing-remitting

6.0 (5.9)

5.5 (7.6)

0,0

4,58

EDSS of ≥6, No. (%)

.03

5.8 (6.6)

.75