The gendered impact of Buruli ulcer on the household production of health and social support networks: Why decentralization favors women

Abstract

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. ...

Mapping suitability for Buruli ulcer at fine spatial scales across Africa: A modelling study

“…Some locations in northern Cameroon with evidence of PCR-confirmed BU were found to be unsuitable for the disease. Given the great volume of surveillance data collected by the well-established BU control programme in Cameroon, some patients are likely to have been diagnosed outside the region where they acquired the disease [72], and we consider it plausible that some regions where BU has been recorded are not actually suitable for transmission. The model did not predict occurrence of BU or M. ulcerans within the early BU foci in Uganda and northern DRC [46,[73][74][75], or in South Sudan where cases were reported in the early 2000's [76], although moderate suitability was predicted around these areas.…”

Social Science Contributions to BU Focused Health Service Research in West-Africa

“…When a woman is compelled to travel to a clinic for decentralized care or to remain in a hospital for long term BU care she may become the subject of rumors suggesting she is engaging in illicit sexual relations when travelling outside her community. Social risk associated with seeking health care was identified in each of the three index countries, but poorly documented in all but Benin [28,29]. Concern about social risk is one reason women travel to health posts with children or a chaperon, and that children serve as patient care takers at hospitals.…”

“…Despite free antibiotic treatment for BU, these costs can be catastrophic [44][45][46]. 4 Another enabling factor is the identification of appropriate substitute caretakers for children left at home when a mother needs to travel to receive treatment for herself or a child [28]. For this reason it is important to look at the household as a unit of analysis [45,48] and to employ a household production of health [49,50] lens when examining BU health care decisions and patient abandonment.…”

“…For this reason it is important to look at the household as a unit of analysis [45,48] and to employ a household production of health [49,50] lens when examining BU health care decisions and patient abandonment. 5 Another useful lens employed by researcher Ines Agbo [28] is that of gender. A consideration of gender relations leads us to an appreciation of the impact BU treatment has on social networks beyond the immediate household of the afflicted given that assistance is commonly requested from extended kin during times of need.…”

“…A consideration of gender relations leads us to an appreciation of the impact BU treatment has on social networks beyond the immediate household of the afflicted given that assistance is commonly requested from extended kin during times of need. Agbo et al draw attention to the ripple effect of BU beyond households as well as the impact that requests for assistance on social relations over time [29].…”