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. 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.