02268nas a2200181 4500000000100000008004100001653003900042653001100081653001100092653001200103100001400115245007500129856009800204300001300302490000700315520175000322022001402072 2017 d10aNeglected tropical diseases (NTDs)10aCoping10aChagas10aBolivia1 aForsyth C00a"I cannot be worried": Living with Chagas disease in tropical Bolivia. uhttp://journals.plos.org/plosntds/article/file?id=10.1371/journal.pntd.0005251&type=printable ae00052510 v113 a
BACKGROUND: Chagas disease (CD) profoundly affects the social and emotional dimensions of patients' lives, and disproportionately impacts poor, marginalized populations in Latin America. Biomedical treatment for CD fails to reach up to 99% of the people affected, and in any case seldom addresses the emotional health or socioeconomic conditions of patients. This study examines patient strategies for coping with CD in the department of Santa Cruz, Bolivia.
METHODOLOGY: In this ethnographic study, semistructured interviews took place from March-June 2013 with 63 patients who had previously tested positive for CD. During the fieldwork period, participant observation was conducted and patient family members, providers, community members, and public health officials were consulted.
PRINCIPAL FINDINGS: Patients often experienced emotional distress when diagnosed with CD, yet were generally unable to find biomedical treatment. Respondents stressed the need to avoid powerful emotions which would worsen the impact of CD symptoms. To manage CD, patients embraced a calm state of mind, described in Spanish as tranquilidad, which partially empowered them to return to a normal existence.
CONCLUSIONS: In the perceived absence of biomedical treatment options, patients seek their own means of coping with CD diagnosis. Rather than fatalism or resignation, patients' emphasis on maintaining calm and not worrying about CD represents a pragmatic strategy for restoring a sense of normalcy and control to their lives. Programs focused on treatment of CD should remain mindful of the emotional and social impact of the disease on patients.
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