Lost in Translation? Exploring Challenges in Access and Use of Language Services for Low-English Proficiency Patients During Transitions of Care in the Baltimore Area Nimasha Fernando¹, Yolanda Peprah², Bambi Chapin³, Eberechukwu Onukwugha², Wendy Camelo Castillo² ¹Department of Epidemiology and Public Health, University of Maryland, School of Medicine ²Department of Pharmaceutical Health Services Research, University of Maryland, School of Pharmacy ³Department of Sociology, Anthropology, and Health Administration and Policy, University of Maryland, Baltimore County Background I) Scope: Over 25 million persons in the U.S are defined as being of Limited English Proficiency (LEP) (U.S Census Bureau 2015) In Maryland, LEP persons represent over 6% of the population (U.S Department of Justice, Civil Rights Division 2014) II) Disparity: Limited access and availability of language services is associated with poorer health outcomes for LEP patients, compared to their English proficient counterparts (Jacobs 2011; Pippins 2007) Language-related barriers increase LEP patients’ risk for adverse health events (Agency for Healthcare Research and Quality 2012) Provision of appropriate language services can address this disparity (Dowbor 2015; Graham 2007) III) U.S Policy: Affordable Care Act Section 1557 references the Civil Rights Act of 1964 to declare that federally funded health programs can not discriminate When serving LEP patients, meaningful access to language services must be provided (U.S Department of Health and Human Services 2017) Validation Results The thematic analysis of interviews from all participants taken together revealed 12 main challenges regarding access and use of language services for LEP patients across the hospital to home transition of care timeline (Figure 1) Some of these challenges participants identified were those confronting patients and caregivers (Figure 1, left), while other challenges were those confronting providers and the health system (Figure 1, right) Figure 1: Language Service Related Challenges Identified by Participants in their Explanations of the Transitions in Care Process Supporting Quotes “In my introduction, [I let] them know who I am and I am here for them and they don’t have to pay me Sometimes they think they have to pay me and I say no I work for the hospital.” ~ Medical Interpreter “An interpreter wasn’t available at that time … so I would get phone calls randomly throughout the day from my mom’s cell phone with the doctor on the line saying like “Hey can you tell your mom that this is happening with your sister, can you tell her so then she knows.” ~ Caregiver Aims Rationale: Identifying language-related challenges across the hospital to home transition of care is critical to improving quality of care and eliminating language-related health disparities during a time period when there is heightened risk for poor health outcomes such as hospital readmission Characterize the challenges with access and use of language services across the hospital to home transition of care among LEP patients with chronic conditions •Identify all instances where participants describe a language-related challenge or gap in service •Compare participants’ perspectives on challenges with language services Methods Study Design: Qualitative pilot research Study Sample: •Fall 2016 - Winter 2017: Recruited a purposive sample of persons with different formal or informal experiences caring for Latin American immigrants as they transitioned from hospital to home care in the Baltimore area Qualitative Data Collection: •Conducted N=8 semi-structured audio-recorded interviews discussing the transition of care process for Latin American immigrant patients living with chronic diseases •Transcribed and translated verbatim (from Spanish, n=2) interviews Systematic Thematic Analysis: •Guided by grounded theory •Identified all responses where participants described LEP patients and referred to language services using the Dedoose version 8.0.35 analysis tool “There’s been times where there’s been interpreters in the room … it’s not to judge their Spanish … sometimes I feel their skills might be … not as fluent So I will sometimes go back and correct whatever has been said.” ~ Caregiver “All the documentation and leaflets that they give, they give in English I don’t know if at any time they think that she does not speak English.” ~ Nurse “Even if it is provided in Spanish it still might not be comprehensible to the patient.” ~ Advocate “When they come back I [the provider] ask: ‘Did you call?’ Patient: ‘Oh yes, I called but that number did not work, they never answered me in Spanish.’” ~ Medical Interpreter “We have to always contact them first, make sure that they have the services in Spanish so that we can tell the people that they can trust that there they will speak to them in Spanish.” ~ Advocate “I know my parents [with LEP] will their best to take care of my sister … [they] might miss some of the smaller details like ‘look out for the side effect if this happened.’” ~ Caregiver Lack of awareness of language service resources “Can you tell her”: Lack of acknowledging the patient or caregiver when using language services Interpreters “translate what they want to translate”: Lack of accuracy of the translation provided Limited availability of appropriate language services including language concordant discharge materials “They only speak English”: Lack of awareness of potential language services when initiating care in the community “It is always difficult”: Excess burden of access and availability Challenges Providers & the Health System Face Inpatient Stay Supporting Quotes “Rather than wait”: Difficulty accessing timely language services and lack of alternative options when the main service is not available “Because I’m a physician I can explain things on a medical basis rather than wait for a translator … since I am a doctor I know what to say.” ~ Physician “That’s a tenant of of translation, you don’t use family [or] young people, but sometimes that’s all you have.” ~ Community Program Director “It still takes practice”: Providers’ limited training to communicate effectively with patients through language services “A provider can be trained pretty easily how to use an interpreter service but it still takes practice to learn how to appropriately use an interpreter service … the provider usually will wind up speaking to the interpreter or speaking to the phone instead of the patient.” ~ Community Program Director Admission Discharge “Social pieces”: Limited access to discharge materials in the patient’s language of choice “Did they receive instructions that are in their language? Does it help? And even then if they received it in their language are they literate enough to read it?” ~ Community Program Director Need an “information translation”: Limited availability of language concordant services appropriate for the patient’s literacy level “Sometimes an information translation has to be made, just the person doesn’t understand the medical term.” ~ Advocate “Even if there is an interpreter, there’s a lot of jargon.” ~ Caregiver Limited capacity to provide language services in the outpatient community care Care setting Coordination Outpatient CommunityBased Care Lack of alternative options when main language services are not available Possible Outcomes “When you are getting into offices and those types of things, the ability to provide that - I think phone services are running fifty to seventy dollars an hour … a lot of primary care physicians cannot afford that.” ~ Community Program Director “When you start to venture out into physicians’ offices, other facilities that are more privately run, individually run, if they don’t have someone who speaks Spanish on staff or speaks a language on staff that’s needed they [the patient] may not get the services that are culturally appropriate.” ~ Community Program Director “What happens is the patient brings whoever is available, … the relative [they bring] might be upset to find out that they have a cancer diagnosis or … let’s say you’re dealing with a sexually transmitted disease … that’s a very tough tough conversation to have … and think about the dignity of the patient … It’s just problematic.” ~ Community Program Director ? … Health Management with Community-Based Care Use of Ad Hoc Interpreters Overburdening of Family/Caregivers Reliance on Advocate Participant Role Hospital Care Admission Caregiver Community-Based Care Inpt Stay Discharge Care Coord Outpatient Follow-up X X X X Caregiver X X X Community Advocate X X X Community Advocate Hospital to Home Transition Stage Challenges Patients & Caregivers Face Table 1: Participants’ Roles and Experiences with Language Services Throughout the Transitions of Care Process Delay or Disengage in Care Hospital Readmission Community Program Director X Medical Interpreter X Nurse X X X X X X X X Physician X X X Together, participants’ variety of roles allowed them to speak about experiences with language services and challenges at every stage of the transition of care timeline, allowing this research to explore challenges in access and use of language services across the hospital to home transition process Conclusions I) Access to language services for LEP patients is inconsistent despite federally funded facilities’ legal obligations to provide these services II) Policies and guidelines governing language services should be evaluated from a systems-perspective to ensure they are meeting the communication needs of LEP patients at all stages of the hospital to home transitions of care process in order to address language-related health disparities across the health system Public Health Implications Policy consideration: Even if language services are offered, are these resources adequate to provide high-quality, timely care to the LEP patient population Education: Training for emerging health professionals and current providers could include LEP patient simulation sessions to increase practice communicating literacy level appropriate health information through various language service options Potential Next Steps: Design and implement strategies to increase access to language services across the hospital to home transition, including community-based care settings Acknowledgements The authors express gratitude to the participants who shared their personal stories and their time to help make this work possible Funding for this presentation was provided by the University of Maryland, School of Medicine (UMSOM) Beta Tau chapter of Delta Omega, UMSOM Department of Epidemiology and Public Health, and the University of Maryland, School of Pharmacy Department of Pharmaceutical Health Services Research Thank you to the University of Maryland, Baltimore County Interdisciplinary Studies Program for helping facilitate the initial collaboration that lead to this work Contact Information: Nimasha Fernando nfernando@umaryland.edu