Cultural and translation challenges in assessing health literacy in four language groups: The RxHL study Susan J. Shaw, Molly Totman, Dina Gavrilyuk, Josephine Korchmaros, Cristina Huebner Torres, Jeannie Lee

Overview Background/revious studies Methods Setting, participants Findings – Variation in correct scores across items by ethnic groups – Qualitative findings Cultural context and translation Abstract thinking Conclusion

Background The Culture and Health Literacy Project – National Cancer Institute R01 CA128455, – Chronic disease self-management and health literacy among four ethnic groups – SAHLSA, REALM, s-TOFHLA (English and Spanish, translated into Vietnamese) – Vietnamese participants in particular struggled with Cloze procedure in s-TOFHLA – Participants substituted personal experience for numeracy examples (J Health Comm 17(S3), 2012, JIMH 11(6), 2009)

RxHL: Integrating multiple methods Quantitative Methods: Manual 3-mo. pill count Self-report Survey Health literacy (SAHL-SE) Beliefs about Medicines Questionnaire (BMQ) Morisky medication adherence scale USDA food insecurity Social support scale Medical chart abstraction Clinical outcomes – Diabetes – Blood pressure – cholesterol – BMI Health insurance status RxHL Self- Report Survey Chart Abstrac- tion Medica- tion Diaries Home Visits In-depth Inter- views Qualitative Methods: In-depth interviews facilitators / barriers to adherence gaps in insurance coverage medication beliefs Home visits home medication management practices social support transportation barriers Chronic disease diaries daily adherence record experience using pharmacy

Health literacy measure: SAHL-S&E Short Assessment of Health Literacy-Spanish and English (Lee et al. 2010) Word pronunciation and comprehension – One stem word, one key, one distracter Translated into Russian and Vietnamese, pre- tested with 5 participants Medication Instrument treatment

Setting: Caring Health Center Section 330 federally-qualified health center (FQHC) Adult & pediatric primary care, women’s health, behavioral health, oral health, nutrition & WIC, wellness education and other services Largest refugee resettlement site in MA 6 sites in Springfield, MA >52% of adult patients require translation services CHC patients speak 25 different languages, 12 of which are offered on site

RxHL participants 284 patients from 5 ethnic groups with chronic disease (diabetes, HPB, depression, high cholesterol) 40.5% have < high school education; 36.6% have inadequate health literacy 64.4% speak a language other than English at home Mean age = 55 years 60.6% female

HL and education vary by ethnicity HL and study group: F(4, 242) = 8.71, p <.001, n=247

Item difficulty across ethnic groups % of participants who answered each item correctly: Yellow = Smallest %ages correct within each ethnic group group = most difficult for group Blue = Largest %ages correct within each ethnic group = least difficult for group

Amount of variation in correct scores across items by ethnic group %

Context makes difference The medical context of a health literacy scale brings meaning to English stem words that translators may not recognize – Directed (instruction, decision) (“Take as directed”) (Masc.) translation of “Directed” points to a person Instruction (key word) – “Instruction” [инструкция] = written instruction, e.g., a manual – “instruction” [указание] = verbal instruction Masculine endings for adjectives in Russian implicitly refer to a person rather than a thing or a situation (neutral or feminine ending) – Abnormal (different, similar) Masc. translation of “Abnormal” applies to a person rather than a thing Different (key word) – “different” [другой] = used when referring to things – “different” [иной] = used when referring to people

Concepts that don’t clearly translate Russian Nutrition (healthy, soda) – Nutrition Initially translated to Russian as “balanced/whole nourishment” [полноценное питание] Final translation was “nourishment” [питание] – Soda (distracter) Initially translated as “lemonade” [лимонад] Final translation was “carbonated beverage” [газированный напиток] Vietnamese Kidney (urine, fever) – Fever (distracter) Has multiple meanings in Vietnamese, “fever” [sốt] or “sauce” [sốt] Must be specified with the Vietnamese word for “high” or “hot” to preserve the meaning

Answering questions outside personal experience If Vietnamese-speaking participants do not personally identify with the words, they have difficulty recognizing the correct answer (key) – Miscarriage (loss, marriage) – Pregnancy (birth, childhood) “I am a male, I can’t have a miscarriage (pregnancy)!” – Alcoholism (addiction, recreation) “Alcoholism is no good for me, not for addiction or recreation”

Conclusions Cultural and linguistic differences may hinder Vietnamese and Russian-speaking participants’ performance on SAHL-S&E – medical context brings implicit meanings to terms that are revealed during translation Different groups had difficulty with different items on SAHL-SE, even among English and Spanish speakers

Acknowledgements RxHL team University of Arizona Josephine Korchmaros, PhD, Southwest Institute for Research on Women Jeannie K. Lee, PharmD, School of Pharmacy Amanda Hilton, School of Anthropology Will Robertson, MA, School of Anthropology Caring Health Center Cristina Huebner Torres, MA, ABD, VP for Research Molly Totman, MPH, Project Coordinator Sabina Dakhal, MPH, Ethnographer Interviewers: Khanh Nguyen, Dina Gavrilyuk, Yoeli Pachecos NHLBI: This research was supported by grant #1R01HL