You Don't Have a Normal Life

Coping with Chagas Disease in Los Angeles, California

Bibliographic Data

ID4564541
AuthorsC Forsyth (0000-0003-1481-8367, Drugs for Neglected Diseases initiative-North America, New York, New York, USA, corresponding author), Salvador Hernandez (0000-0002-3219-786X, Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Carmen A Flores (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Mario F Roman (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), J Maribel Nieto (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Grecia Marquez (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Juan Sequeira (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Harry Sequeira (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Sheba K Meymandi (Center of Excellence for Chagas Disease, Olive View-UCLA Medical Center, Sylmar, California, USA), Sheba Meymandi (0000-0002-0734-0329, Olive View-UCLA Medical Center)
Year2021
Volume40
Issue6
Pages525-540
Publication date2021-08-18
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueMedical Anthropology (JOURNAL)
Journal identifiersISSN: 0145-9740 • E-ISSN: 1545-5882
PublisherInforma UK Limited (PUBLISHER • GB)
DOI10.1080/01459740.2021.1894559
PMID33784220
OpenAlexW3149920347
LanguageEN
Citations received3
References cited40

Chagas disease is the neglected tropical disease of greatest public health impact in the United States, where it affects over 300,000 people. Diverse barriers limit healthcare access for affected people; fewer than 1% have obtained testing or treatment. We interviewed 50 people with Chagas disease in Los Angeles, California, and administered a cultural consensus analysis questionnaire. Participants were asked about their experiences and perceptions of Chagas disease, access to healthcare, and strategies for coping with the disease. In participants' narratives, the physical and emotional impacts of the disease were closely interwoven. Participant explanatory models highlight difficulties in accessing care, despite a desire for biomedical treatment. Obtaining testing and treatment for Chagas disease poses substantial challenges for US patients

Chagas disease · Coping (psychology · Coronavirus disease 2019 (COVID-19 · Disease · Infectious disease (medical specialty · New normal · Psychiatry · Immunology · Internal Medicine · Medicine · Psychology · Public Health and Social Inequalities · Trypanosoma species research and implications · Gerontology

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