The gendered impact of Buruli ulcer on the household production of health and social support networks: Why decentralization favors women
The gendered impact of Buruli ulcer on the household production of health and social support networks: Why decentralization favors women
复制标题
DOI：
10.1371/journal.pntd.0007317
复制
发表时间：
2019-04-01
影响因子：
3.8
通讯作者：
Nichter, Mark
中科院分区：
文献类型：
--
作者：
Agbo, Ines Elvire;Johnson, Roch Christian;Nichter, Mark
背景布鲁里溃疡[BU]是一种由溃疡分支杆菌引起的慢性、令人衰弱、被忽视的热带皮肤病。对中度至重度布鲁里溃疡的治疗影响到整个家庭的福祉，并对家庭内的性别关系和与要求各种支助的亲属的社会关系造成压力。在本文中，我们采用家庭健康生产方法提供的概念透镜来理解疾病对家庭的影响，作为分析单位，性别研究，和社会支持相关研究，以更好地了解BU医疗保健决策和BU住院的心理社会体验。方法采用民族志，关注环境和利益相关者对BU做出反应的嵌套背景，采用半结构化访谈，疾病叙述和案例研究进行。一个反复的数据收集过程，加上初步分析和反思，形成了随后的访谈。访谈进行了45名妇女的家庭成员患有布鲁里溃疡在贝宁的两个社区与布鲁里溃疡的高流行率。第一个社区[ZE]有一个完善的分散的布鲁里溃疡治疗方案和一个运作良好的转诊网络，该网络与专门治疗布鲁里溃疡和其他慢性溃疡的Allada参考医院相连。第二个社区[Ouinhi]是该国最后一个引入分散式布鲁里溃疡治疗方案的地区之一。主要研究结果研究结果表明，虽然男性是家庭以外的医疗保健决策的主要决策者，但女性在很大程度上负责安排照顾患病者在医院除了管理自己的家庭。妇女影响决策过程的能动性和能力主要取决于她能从自己的亲属关系网络中调动的任何社会支持和替代劳动力。当支持减少时，妇女就处于弱势地位，往往最终陷入贫困。分散的布鲁里溃疡治疗是首选的，因为它使妇女能够留在自己的家中，作为病人或照顾生病的家庭成员，同时从事儿童保育和小额收入赚取活动。留在医院（一个界限空间）作为病人或看护人也使妇女容易受到关于性关系的谣言和影射，并构成一种社会风险。在某些情况下，社会风险黯然失色的疾病的身体风险，我们会描述为一个层次的risks.Conclusion这项研究说明了分散的治疗方案，如BU NTDs的重要性。这些方案使病人在接受治疗时能够留在家中，而且不会使负责整个家庭福利的妇女流离失所。当妇女流离失所的福祉，整个households.Author摘要在这个被忽视的热带疾病布鲁里溃疡（BU）在贝宁，西非，以性别为重点的研究，我们的文件如何寻求照顾布鲁里溃疡是受广泛关注的家庭生产的健康和可用性的资源，妇女可以调动他们的社会支持网络。妇女和女孩承担了不成比例的布鲁里溃疡治疗负担，她们更喜欢地方卫生站的分散治疗，而不是免费住院治疗。长期和经常无限期地住在医院威胁到家庭的完整性，造成婚姻紧张、经济脆弱、辍学和职业培训以及基本创收活动的丧失。BU的案例研究清楚地表明，有必要认识到家庭，而不仅仅是病人，作为公共卫生分析的一个单位，有必要考虑严重疾病的涟漪反应超越家庭的社会网络。我们提请注意这样一个事实，即在贝宁父系社会中，男子是保健的决策者，而妇女影响决策的机构则与其社会资本的积累有关，长期医疗所消耗的资本削弱了妇女未来的安全网。
Background Buruli ulcer [BU] is a chronic and debilitating neglected tropical skin disease caused by Mycobacterium ulcerans. The treatment of moderate to severe BU affects the well-being of entire households and places a strain on both gender relations within households and social relations with kin asked for various types of support. In this paper, we employ the conceptual lenses provided by the Household Production of Health approach to understanding the impact of illness on the household as a unit of analysis, gender studies, and social support related research to better understand BU health care decision making and the psychosocial experience of BU hospitalization.Methods An ethnography attentive to circumstance and the nested contexts within which stakeholders respond to BU was conducted employing semi-structured interviews, illness narratives, and case studies. An iterative process of data collection with preliminary analyses and reflection shaped subsequent interviews. Interviews were conducted with 45 women in households having a member afflicted with BU in two communes of Benin with high prevalence rates for BU. The first commune [ZE] has a well-established decentralized BU treatment program and a well-functioning referral network linked to the Allada reference hospital specializing in the care of BU and other chronic ulcers. The second commune [Ouinhi] is one of the last regions of the country to introduce a decentralized BU treatment program. A maximum variation purposeful sample was selected to identify information-rich health care decision cases for in-depth study.Principal findings Study results demonstrated that although men are the primary decision makers for healthcare decisions outside the home, women are largely responsible for arranging care for the afflicted in hospital in addition to managing their own households. A woman's agency and ability to influence the decision-making process is largely based on whatever social support and substitute labor she can mobilize from her own network of kin relations. When support wanes, women are placed in a vulnerable position and often end up destitute. Decentralized BU treatment is preferred because it enables a woman to remain in her own household as a patient or caretaker of an ill family member while engaging in child care and petty revenue earing activities. Remaining in the hospital (a liminal space) as either patient or caretaker also renders a woman vulnerable to rumor and innuendo about sexual liaisons and constitutes a form of social risk. Social risk in some cases eclipses the physical risk of the disease in what we would describe as a hierarchy of risks.Conclusion This study illustrates the importance of decentralized treatment programs for NTDs such as BU. Such programs enable patients to remain in their homes while being treated, and do not displace women responsible for the welfare of the entire household. When women are displaced the well-being of the entire household is placed in jeopardy.Author summary In this gender-focused study of the neglected tropical disease Buruli ulcer (BU) in Benin, West Africa, we document how seeking care for BU is influenced by broad-based concerns about the household production of health and the availability of resources women can mobilize from their social support networks. Women and girls shoulder a disproportionate share of the burdens incurred by BU treatment and prefer decentralized treatment from local health stations to free hospital care. Long term and often-indeterminate residence in hospital threatens the integrity of households and results in marital stress, economic vulnerability, school and vocational training dropout, and loss of essential income-generating activities. The case study of BU clearly demonstrates the necessity of recognizing the household, and not just the patient, as a unit of analysis in public health and the need to consider the ripple effect of serious illness beyond the household to one's social network. We draw attention to the fact that while men are the decision makers about health care in patrilineal Beninese society, a women's agency in influencing decision making is tied to her accumulation of social capital, capital that is taxed by long term medical treatment weakening her safety net in the future.