Department of International Public Health, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, United Kingdom.
University of Liberia, Pacific Institute for Research and Evaluation, Monrovia, Monsterrado, Liberia.
PLoS Negl Trop Dis. 2019 Sep 6;13(9):e0007710. doi: 10.1371/journal.pntd.0007710. eCollection 2019 Sep.
Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond.
We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory.
For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience.
This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.
综合疾病管理、残疾和包容（DMDI）在被忽视热带病（NTDs）中越来越受到重视。 从受影响个体的角度以及从年龄、性别和残疾等不同不平等轴来看，综合 DMDI 的有效性的证据有限。 我们使用叙述方法来考虑个人独特的权力和特权地位如何塑造他们的疾病经历，以阐明在利比里亚及其他地方支持综合 DMDI 的实际可行步骤。
我们从利比里亚的三个县有选择地选取了 27 名患有淋巴丝虫病、麻风病、布鲁里溃疡和盘尾丝虫病临床表现的个体参加疾病叙述性访谈。 参与者的选择旨在确保年龄、性别和临床表现的最大变化。 叙述性分析基于女性主义交叉理论。
对于所有参与者，与 NTDs 相关的慢性疾病、发病率和残疾代表了“传记中断”的关键时刻，引发了恢复性叙述的开始。 复杂的寻医途径、病因和医学融合意味着最初可以接受“病人角色”，但当病情永久性的现实被确定时，就会经历混乱和严重心理社会困难的时期。 交叉视角强调传记中断如何受到交叉社会过程的调节。 性别、代际和残疾都是塑造经验的主要社会不平等轴。
这是首批使用叙述方法来调查 LMIC 中慢性致残疾病的经历的研究之一，也是唯一将这种分析应用于 NTDs 的研究。 叙述的情感力量应该被利用来影响决策者的价值观基础，以确保 DMDI 战略全面回应最边缘化人群的需求，从而为更公平的以人为本的护理做出贡献。
