skip to main content
10.1145/3328020.3353940acmotherconferencesArticle/Chapter ViewAbstractPublication PagesdocConference Proceedingsconference-collections
short-paper

Creating a bilingual, localized glossary for end-of-life-decision-making in borderland communities

Published:04 October 2019Publication History

ABSTRACT

Recent scholarship puts forth that although designers work carefully to craft, vet, and follow up on health communication, insufficient attention has been given to ways patients and health providers use materials in their own contexts and cultures [1, 2, 3]. While evidence-based practices matter and should continue to factor into medical decisions, many local resources are underutilized [4, 5]. This experience report documents how participatory, community-based User-Experience (UX) [6] was used to inform the design of a glossary to effectively facilitate how bilingual (Spanish and English-speaking) individuals on the Mexico-U.S. border interface with end-of-life (EOL) terminology. The report highlights the importance of expanding the boundaries of health-related communication design beyond single, static, dominant language ideologies. It describes lessons learned relative to UX, localization, language, and interdisciplinary collaboration.

References

  1. Godwin, Agboka Y. 2013. Participatory localization: A social justice approach to navigating unenfranchised/disenfranchised cultural sites. Technical Communication Quarterly, 22, 1 (Jan. 2013), 28--49. Google ScholarGoogle ScholarCross RefCross Ref
  2. Gonzales, Laura, Dura, Lucia, Flores-Hutson, Patricia, Maier, Carrizal-Dukes, Elvira. Forthcoming. White Paper: Participatory Localization to Develop Support Materials for End-of-Life Conversations and Decision-Making in a Borderland Community.Google ScholarGoogle Scholar
  3. Kirk St. Amant. 2017. The cultural context of care in international communication design: A heuristic for addressing usability in international health and medical communication. Communication Design Quarterly, 5, 2 (Jul. 2017), 62--70. Google ScholarGoogle ScholarDigital LibraryDigital Library
  4. Dura, Lucia. 2016. What's wrong here? What's right here? Introducing the Positive Deviance Approach to community-based work. Connexions International Professional Communication Journal, 4, 1 (May 2016), 57--89.Google ScholarGoogle ScholarCross RefCross Ref
  5. Heifferon, Barbara. 2017. New technologies, patient experience, theoretical approaches and heuristics in RHM. Communication Design Quarterly, 5, 2 (Jul. 2017), 3--15. Google ScholarGoogle ScholarDigital LibraryDigital Library
  6. Rose, Emma, Racadio, Robert, Wong, Kalen, Nguyen, Shally, Kim, Jee, and Zahler, Abbie. 2017. Community-based user experience: Evaluating the usability of health insurance information with immigrant patients. IEEE Transactions on Professional Communication, 60, 2 (Mar. 2017), 214--231. Google ScholarGoogle ScholarCross RefCross Ref
  7. Keren Ladin, Katie Buttafarro, Emily Hahn, Susan Koch-Weser, and Daniel E Weiner. 2018. "End-of-Life Care? I'm not Going to Worry About That Yet." Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients, The Gerontologist, 58, 2 (Apr. 2018), c Google ScholarGoogle ScholarCross RefCross Ref
  8. Lakin, Joshua, Block, Susan, Billings, J. Andrew, Koritsanszky, Luca, Cunningham, Rebecca, Wichmann, Lisa, Harvey, Doreen, Lamey, Jan, and Bernacki, Rachelle. 2016. Improving Communication About Serious Illness in Primary Care: A Review. JAMA Intern Med, 176, 9 (Sept. 2016), 1380--1387. Google ScholarGoogle ScholarCross RefCross Ref
  9. Solis, Guillermina, Mancera, Bibiana, and Johnson Shen, Megan. 2018. Strategies used to facilitate the discussion of advance care planning with older adults in primary care settings: A literature review. Journal of the American Association of Nurse Practitioners, 30, 5 (May 2018), 270--279. Google ScholarGoogle ScholarCross RefCross Ref
  10. Waite, Katherine R., Federman, Alex D., McCarthy, Danielle M., Sudore, Rebecca, Curtis, Laura M., Baker, David W., Wilson, Elizabeth A., Hasnain-Wynia, Romana, Wolf, Michael S. & Paasche-Orlow, Michael K. 2013. Literacy and race as risk factors for low rates of advance directives in older adults. Journal of the American Geriatrics Society, 61, 3 (Feb. 2013), 403--406. Google ScholarGoogle ScholarCross RefCross Ref
  11. Nuila, Ricardo. 2012. Home: Palliation for dying undocumented immigrants. New England Journal of Medicine, 366 (May 2012), 2047--2048. Google ScholarGoogle ScholarCross RefCross Ref
  12. Moya, Eva, Chavez-Baray, Silvia, Esparza, Oscar, Calderon Chelius, Leticia, Castaneda, Ernesto, Villalobos, Griselda, Eguiluz, Itzel, Martinez, Edna, Herrera, Karen, Llamas, Tania, Arteaga, Marcela, Diaz, Laura, Najera, Maribel, Landa, Nancy, and Escobedo, Virgina. 2016. El síndrome de Ulises en inmingrantes económicos y políticos en Mexico y Estados Unidos. Equidad. International Welfare Policies and Social Work Journal, 5 (Jul. 2016), 11--50. Google ScholarGoogle ScholarCross RefCross Ref
  13. Wright Alexi A., Zhang Baohui, Ray Alaka, Mack Jennifer W., Trice Elizabeth, Balboni Tracy, Mitchell Susan L., Jackson Vicki A., Block Susan D., Maciejewski Paul K., and Prigerson Holly G. 2008. Associations between end-of-life 12 discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300 (Oct. 2008), 1665--73. Google ScholarGoogle ScholarCross RefCross Ref
  14. Zhang, Baohui, Wright, Alexi, Huskamp, Haiden, Nilsson, Matthew, Maciejewski, Matthew, Earle, Craig, Block, Susan, and Prigerson, Holly. 2009. Health care costs in the last week of life: associations with end-of-life conversations. Archives of Internal Medicine, 169, 5 (Mar. 2009), 480--488. Google ScholarGoogle ScholarCross RefCross Ref
  15. Zhang, Baohui, Nilsson, Matthew, & Prigerson, Holly. 2012. Factors important to patients' quality of life at the end of life. Archives of Internal Medicine, 172, 15 (Aug. 2012), 1133--1142. Google ScholarGoogle ScholarCross RefCross Ref
  16. Mack Jennifer, Weeks Jane, Wright Alexi., Block Susan, and Prigerson, Holly. 2010. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology, 28 (Mar. 2012), 1203--1208. Google ScholarGoogle ScholarCross RefCross Ref
  17. Cruz-Oliver, Dulce, Talamantes, Melissa, and Sanchez-Reilly, Sandra. 2014. What evidence is available on end-of-life (EOL) care and Latino elders? A literature review. American Journal of Hospice & Palliative Care, 31(1), 87--97.Google ScholarGoogle ScholarCross RefCross Ref
  18. Ashcraft, Alice and Owen, Donna. 2016. End-of-life planning in a rural elderly cohort. Geriatric Nursing, 37, 1 (Jan. - Feb. 2016), 71--74. Google ScholarGoogle ScholarCross RefCross Ref
  19. Kwak, Jung, De Larwelle, Jessica, and Kesler, Toni. 2016. Role of advance care planning in proxy decision making among individuals with dementia and their family caregivers. Research in Gerontological Nursing, 92, 2 (May 2015), 72--80. Google ScholarGoogle ScholarCross RefCross Ref
  20. U.S. Census Bureau 2017/2018. QuickFacts, El Paso County, Texas. Retrieved from https://www.census.gov/quickfacts/fact/table/elpasocountytexas/POP815217#POP815217Google ScholarGoogle Scholar

Recommendations

Comments

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Sign in
  • Published in

    cover image ACM Other conferences
    SIGDOC '19: Proceedings of the 37th ACM International Conference on the Design of Communication
    October 2019
    308 pages
    ISBN:9781450367905
    DOI:10.1145/3328020

    Copyright © 2019 ACM

    Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

    Publisher

    Association for Computing Machinery

    New York, NY, United States

    Publication History

    • Published: 4 October 2019

    Permissions

    Request permissions about this article.

    Request Permissions

    Check for updates

    Qualifiers

    • short-paper

    Acceptance Rates

    SIGDOC '19 Paper Acceptance Rate85of105submissions,81%Overall Acceptance Rate355of582submissions,61%

PDF Format

View or Download as a PDF file.

PDF

eReader

View online with eReader.

eReader