Psychosocial burden of neglected tropical diseases in eastern Colombia: an explorative qualitative study in persons affected by leprosy, cutaneous leishmaniasis and Chagas disease

Abstract

Background Leprosy, cutaneous leishmaniasis (CL) and Chagas disease (CD) are neglected tropical diseases (NTDs) with a high psychosocial burden in Norte de Santander and Arauca in Colombia. This study provides insights into affected persons' feelings, perceptions and experiences to better understand the nature of this burden. Methods In 2018, 34 leprosy, CD and CL patients participated in four focus groups discussing the influence of the disease on mental well-being, social participation and stigma. Additionally, 13 leprosy patients participated in semi-structured interviews to further explore the health-related stigma related to this disease. Audio recordings were transcribed verbatim, and open coding was used to identify the most relevant categories and themes. Results Persons suffering from CD reported that their mental distress was mainly caused by impairments and stress related to the progressive and incurable nature of the disease. Persons affected by CL perceived the treatment for the disease as having the most impact on their psychosocial well-being. Persons affected by leprosy reported suffering most from anticipated and experienced stigma. Conclusions The findings indicate that these diseases are likely to impose a significant psychosocial burden on patients in the studied regions, even though these vary per condition. Consistent data collection on the psychosocial burden and the sharing of knowledge of effective interventions can contribute to the holistic approach needed to win the fight against NTDs.

Social stigma and mental health impairment in people with leprosy: An integrative review

“…An investigation carried out in Colombia with people affected by leprosy found that the psychosocial burden suffered is due to the stigma experienced, and can impact social participation and professional life. 27 Moreover, in another study conducted in Indonesia and Ghana, it was shown that people with leprosy perceived stigmatization by health care workers, the community, and the labor market. 28 This is corroborated by a study in Nepal which found that depression and a lower state of mental well-being than in the general population is associated with disabilities and the stigma suffered by people affected by leprosy.…”

Systematic Review of Survival Analysis in Leprosy Studies—Including the Following Outcomes: Relapse, Impairment of Nerve Function, Reactions and Physical Disability

“…The main outcomes identified in the studies were leprosy, relapse, nerve function impairment, leprosy reactions and physical disabilities. The mean times and outcomes are key elements of discussion for the prevention and control of leprosy [4,39,40,43].…”

“…The etiologic agent is Mycobacterium leprae, an obligate intracellular bacterium with an affinity for the peripheral nervous system [3]. In general, people affected by the disease suffer social and psychological repercussions due to deformities and physical disabilities caused by the disease's progression [4,5].…”

Quality of life of cutaneous leishmaniasis suspected patients in the Ecuadorian Pacific and Amazon regions: a cross sectional study

“…CL leads to reduced Health Related Quality of Life (HRQL) as a result of social and self-stigma, as has been established in the Asian and Mediterranean contexts [ 5 ]. In contrast, the few studies that assessed HRQL of CL patients in northern South America found no evidence for stigmatization [ 6 , 7 ]. CL patients reported reduced self-esteem in the Ecuadorian subtropical Pacific in 1994 but no follow up was done [ 8 ].…”