Disability Studies in the Netherlands, Almere, The Netherlands.
NLR, Amsterdam, The Netherlands.
PLoS Negl Trop Dis. 2020 Mar 10;14(3):e0008173. doi: 10.1371/journal.pntd.0008173. eCollection 2020 Mar.
Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life.
The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis.
A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants.
This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.
多项研究表明麻风病、象皮病和淋巴丝虫病会影响个人的生活质量。相比之下，家庭生活质量却没有受到太多关注，尽管有证据表明家庭也受到了影响。鉴于家庭在世界上大多数社会中所扮演的关键角色，这一点尤其重要。本研究探讨了麻风病、象皮病和淋巴丝虫病对家庭生活质量的影响。
本研究采用了横断面设计和定性方法。采用半结构式访谈和焦点小组讨论收集数据。通过目的性抽样选择参与者，即受影响的个人及其家庭成员。数据收集于 2017 年 8 月至 11 月在埃塞俄比亚西北部的阿维地区进行，由三名独立研究人员使用开放式、归纳式编码和内容分析法进行分析。
本研究共纳入了 86 名参与者：56 名深度访谈参与者和 30 名焦点小组讨论参与者。我们发现，活动受限、生产力下降和边缘化是常见的问题。此外，社区中经常发生歧视，通常还会延伸到受影响者的家庭成员。受影响者及其家庭成员中，离婚和寻找配偶困难的情况很常见。许多受影响者报告存在心理健康问题。虽然大多数人从家庭获得了社会和身体支持，但也有一些例外。特别是有年幼子女的人似乎缺乏社会支持。为受影响的家庭成员提供支持有时会导致压力、辍学和额外的工作量。几乎所有参与者都报告了财务问题和生计损失。
本研究表明，麻风病、淋巴丝虫病和象皮病会影响家庭生活质量的多个方面。许多报告的问题与耻辱和贫困有关。
