van Wijk Robin, van Selm Lena, Barbosa Martha C, van Brakel Wim H, Waltz Mitzi, Philipp Puchner Karl
NLR, Wibautstraat 137k, 1097 DN Amsterdam, the Netherlands.
German Leprosy and TB Relief Association, DAHW América del Sur, Calle 128 B No. 56 C 05, Bogotá, Colombia.
Glob Ment Health (Camb). 2021 Jun 18;8:e21. doi: 10.1017/gmh.2021.18. eCollection 2021.
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.
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.
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.
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.
麻风病、皮肤利什曼病(CL)和恰加斯病(CD)是被忽视的热带病(NTDs),在哥伦比亚的北桑坦德省和阿劳卡省给患者带来了沉重的心理社会负担。本研究深入了解了患者的感受、认知和经历,以更好地理解这种负担的本质。
2018年,34名麻风病、CD和CL患者参加了四个焦点小组,讨论疾病对心理健康、社会参与和耻辱感的影响。此外,13名麻风病患者参加了半结构化访谈,以进一步探讨与该疾病相关的健康耻辱感。音频记录逐字转录,并采用开放式编码来确定最相关的类别和主题。
患有CD的患者报告说,他们的精神痛苦主要是由与疾病的渐进性和不可治愈性相关的损伤和压力引起的。受CL影响的患者认为该疾病的治疗对他们的心理社会福祉影响最大。受麻风病影响的患者报告称,预期和实际遭受的耻辱感最为严重。
研究结果表明,这些疾病可能给研究地区的患者带来重大的心理社会负担,尽管每种疾病的负担各不相同。持续收集有关心理社会负担的数据以及分享有效干预措施的知识,有助于采取全面方法来战胜被忽视的热带病。