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Abstract：
BACKGROUND: Leprosy and lymphatic filariasis (LF) are among the most disabling neglected tropical diseases (NTDs) that affect the citizens of Mozambique, especially in the Northern provinces. The irreversible impairments caused by these NTDs often lead to psychosocial consequences, including poor mental wellbeing, stigma and reduced social participation. Limited data on these consequences are available for Mozambique, which are urgently needed to better understand the true disease burden and support advocacy for scaling up interventions.
METHODS: A cross-sectional mixed-methods study was conducted. Mental distress was assessed with the Self Reporting Questionnaire (SRQ-20), participation restriction was assessed with the Participation Scale Short (PSS) and perceived stigma was assessed with the Explanatory Model Interview Catalogue affected persons stigma scale (EMIC-AP). Additionally, semi-structured interviews were conducted with persons affected by leprosy or LF.
RESULTS: In total, 127 persons affected by leprosy and 184 persons affected by LF were included in the quantitative portion of the study. For the qualitative portion, eight semi-structured interviews were conducted. In both disease groups, mental distress was found in 70% of participants. Moreover, 80% of persons affected by leprosy and 90% of persons affected by LF perceived stigma. Moderate to extreme participation restriction was found in approximately 43% of persons affected by leprosy and in 26% of the persons affected by LF. Persons affected by leprosy and LF felt excluded from society and experienced financial problems. More severe disabilities were associated with more severe outcomes for mental wellbeing, participation restriction and stigma. By contrast, participation in a self-care group was suggested to have a positive impact on these outcomes.
CONCLUSIONS: The findings provide evidence that persons affected by leprosy and LF must not only confront physical impairments but also experience significant disability in the psychosocial domain, including mental distress, participation restriction and stigma. These challenges must be urgently addressed by NTD programmes to promote the inclusion and wellbeing of persons affected by NTDs.
METHODS: A cross-sectional mixed-methods study was conducted. Mental distress was assessed with the Self Reporting Questionnaire (SRQ-20), participation restriction was assessed with the Participation Scale Short (PSS) and perceived stigma was assessed with the Explanatory Model Interview Catalogue affected persons stigma scale (EMIC-AP). Additionally, semi-structured interviews were conducted with persons affected by leprosy or LF.
RESULTS: In total, 127 persons affected by leprosy and 184 persons affected by LF were included in the quantitative portion of the study. For the qualitative portion, eight semi-structured interviews were conducted. In both disease groups, mental distress was found in 70% of participants. Moreover, 80% of persons affected by leprosy and 90% of persons affected by LF perceived stigma. Moderate to extreme participation restriction was found in approximately 43% of persons affected by leprosy and in 26% of the persons affected by LF. Persons affected by leprosy and LF felt excluded from society and experienced financial problems. More severe disabilities were associated with more severe outcomes for mental wellbeing, participation restriction and stigma. By contrast, participation in a self-care group was suggested to have a positive impact on these outcomes.
CONCLUSIONS: The findings provide evidence that persons affected by leprosy and LF must not only confront physical impairments but also experience significant disability in the psychosocial domain, including mental distress, participation restriction and stigma. These challenges must be urgently addressed by NTD programmes to promote the inclusion and wellbeing of persons affected by NTDs.
摘要：
背景：麻风病和淋巴丝虫病（LF）是影响莫桑比克公民的最严重的被忽视的热带病（NTD）之一，尤其是在北方省份。这些NTD造成的不可逆转的损伤通常会导致社会心理后果，包括不良的心理健康，耻辱和减少社会参与。莫桑比克关于这些后果的数据有限，这是迫切需要的，以更好地了解真正的疾病负担，并支持倡导扩大干预措施。
方法：进行了横断面混合方法研究。用自我报告问卷(SRQ-20)评估精神困扰，使用短期参与量表(PSS)评估参与限制,并使用解释性模型访谈目录影响者污名量表(EMIC-AP)评估感知污名.此外,对麻风病或LF患者进行了半结构化访谈.
结果：总计，研究的定量部分包括127名受麻风病影响的人和184名受LF影响的人。对于定性部分，进行了八次半结构化访谈。在这两个疾病组中，70%的参与者出现精神困扰.此外，80％的麻风病患者和90％的LF患者感到污名。在大约43％的麻风病患者和26％的LF患者中发现了中度至极端的参与限制。受麻风病和LF影响的人感到被社会排斥，并遇到财务问题。更严重的残疾与更严重的心理健康结果相关，参与限制和耻辱。相比之下,参与自我护理小组被认为对这些结局有积极影响.
结论：研究结果提供了证据，表明受麻风病和LF影响的人不仅必须面对身体损伤，而且在心理社会领域也会经历严重的残疾，包括精神痛苦,参与限制和耻辱。NTD方案必须紧急应对这些挑战，以促进受NTD影响的人的包容和福祉。
方法：进行了横断面混合方法研究。用自我报告问卷(SRQ-20)评估精神困扰，使用短期参与量表(PSS)评估参与限制,并使用解释性模型访谈目录影响者污名量表(EMIC-AP)评估感知污名.此外,对麻风病或LF患者进行了半结构化访谈.
结果：总计，研究的定量部分包括127名受麻风病影响的人和184名受LF影响的人。对于定性部分，进行了八次半结构化访谈。在这两个疾病组中，70%的参与者出现精神困扰.此外，80％的麻风病患者和90％的LF患者感到污名。在大约43％的麻风病患者和26％的LF患者中发现了中度至极端的参与限制。受麻风病和LF影响的人感到被社会排斥，并遇到财务问题。更严重的残疾与更严重的心理健康结果相关，参与限制和耻辱。相比之下,参与自我护理小组被认为对这些结局有积极影响.
结论：研究结果提供了证据，表明受麻风病和LF影响的人不仅必须面对身体损伤，而且在心理社会领域也会经历严重的残疾，包括精神痛苦,参与限制和耻辱。NTD方案必须紧急应对这些挑战，以促进受NTD影响的人的包容和福祉。
