Background

Intimate Partner Violence (IPV), defined as physical, sexual, or psychological harm by a current or former partner or spouse [1], is a serious but preventable public health problem that affects millions of people worldwide. It is one of the most common forms of violence against women [1], and can vary in frequency and severity [2]. Current research recognizes various types of intimate partner violence, including physical, psychological, emotional, sexual, financial and threats of violence [3–5] In Ethiopia alone, the World Health Organization (WHO) estimates that 71% of women suffer physical and/or sexual violence by an intimate partner in their lifetime [6].

It is now accepted that adults suffering from long term conditions or disabilities are 1.5 times more likely to be victims of violence than those without a disability [7]. According to the abundant body of literature on IPV among women living with HIV, this is due to the intersection of disease-associated stigma and discrimination [8–10]. This is of special importance in the case of podoconiosis, given that people with podoconiosis frequently experience stigma in their day to day interactions with family members [11, 12]. Podoconiosis (endemic non-filarial elephantiasis) is a neglected tropical disease (NTD) that can affect individuals exposed to red-clay soil derived from volcanic rock. Equally affecting men and women this disease causes severe swelling of the lower legs and disability [13]. Consequently, people are both stigmatized and discriminated against. This stigma is associated with decreased ability to work, and also with misconceptions surrounding the causes of the disease–often interpreted locally as a punishment from God [11, 14].

In endemic areas, podoconiosis is one of the most common causes of stigmatization [12, 15]. People living with podoconiosis frequently experience stigma in their day-to-day interactions with family members, and the disease ultimately leads to social exclusion of the affected individuals and their families. In studies related to stigmatization, people living with podoconiosis commonly reported that they had considered suicide in response to discrimination and prejudice, particularly in interpersonal interactions [16, 17]. Forced divorce, insults and exclusion at and from social events were some of the most commonly mentioned forms of enacted stigma reported by informants. The most pronounced manifestations of social stigma in endemic areas are being unable to marry, and being excluded from school, church, and social events [16, 17]. Prejudice and discrimination by family members and deprivation of emotional and material support are common in the region [16, 17].

The most recent global estimates for IPV reveal that 30% of women aged 15 and over have experienced physical and/or sexual IPV in their lifetime [18]. Studies in Ethiopia have also shown that between one-half to two-thirds of women experience one or more forms of spousal abuse at least once in their lifetime [19, 20]. However, even though a significant association between lifetime experience of IPV and self-reported poor health and specific health problems is recognized [21], little research explores the relationship between IPV and neglected long term conditions such as podoconiosis. Yet, such an exploration is important both for improving podoconiosis outcomes and for diminishing IPV prevalence in the region. With this purpose this study aimed to explore how podoconiosis influences IPV and how, in turn, IPV influences podoconiosis outcomes. The study also sought to explore the determinants of these relationships in order to establish locally relevant avenues for action.

Methods

Results

Out of the 105 women screened using the HITS tool, a total of 84 scored greater than 10 (80%), 15 of whom consented to the interviews.

Fifteen women were interviewed, aged between 31 and 75 (see Table 1 below). Eleven of them were divorced or separated at the time of interview and were living with their extended families (27%), alone (18%) or on their own with their children (55%). All interviewed women were poor rural dwellers that combined begging (26.7%) or farming and care of livestock with household and childcare work.

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Table 1. Socio-demographic characteristics of research participants.

https://doi.org/10.1371/journal.pone.0207571.t001

Data indicate that all women were victims of overlapping forms of IPV, mostly beatings (with or without an object), insults, name calling, undermining, monitoring of movements, obstruction of access to common assets cheating and sexual coercion. 87% of interviewed women had experienced IPV prior to disease onset and therefore podoconiosis was not the only determinant of IPV. Data however indicate that podoconiosis did influence an increase in the frequency and severity of IPV and on occasion shaped a change from physical to psychological and financial violence:

“His violence increased as the disease aggravated.. the problem is the disease because it hinders my ability to work hard…”

(Selam, aged 50s)

“When the disease aggravated his insults and threats also aggravated.. he beat me less with the stick but slapped me more and refused to bring water or food… when I was a healthier, he had a good behavior too. But when my disease become worse he started to stay ‘go from this house and let me marry another….I must marry a healthier woman!’”

(Genet, aged 40)

As illustrated in these quotes (see also the quotes below), men’s frustration at being married to an ‘unhealthy’ woman who cannot always fulfill household and work expectations is a key determinant of IPV among women living with podoconiosis. According to the inductive process of data analysis we organized the results in three overarching themes: a) Types of IPV experienced by women living with podoconiosis; b) Coping strategies and responses; c) Impact of IPV on podoconiosis outcomes and on dependents.

Discussion

Intimate partner violence among women with podoconiosis takes diverse forms, including physical violence (enacted and threatened), verbal abuse, controlling and disempowering behaviors and sexual coercion. Particular examples include: beating with or without an object, threat of violence via use of weapons, insults, name calling, undermining, restricting choices, withholding money, extramarital affairs, forcing divorce, abandonment, obstruction of health care access and denial of equal rights and decision-making over shared resources. Global estimates published by the WHO indicate that about 1 in 3 (35%) women worldwide have experienced either physical or sexual intimate partner violence or non-partner sexual violence in their lifetime [6], and studies in Ethiopia indicate that between 50 and 71% of women experience one or more forms of spousal abuse at least once in their lifetime [19, 20, 30]. In the study region our research findings reveal that from the 105 women screened through HITS, 84 suffered from IPV (80%). IPV towards women living with podoconiosis is generally tolerated both by women and men, and more widely by the participants’ immediate social networks, including faith leaders (referred to by research participants as ‘the elders’). This is heavily influenced by women’s low recognition and status in the Ethiopian society in general, by a notable absence of formal IPV prevention and management services in the region and by a significant shortage of disability benefits or employment opportunities for women with disabilities.

All women living with podoconiosis experienced, to a greater or lesser extent, various and overlapping forms of IPV. Podoconiosis typically affects impoverished rural populations, which are also the populations most likely to experience intimate partner violence [30]. The social impact described here was consistent with studies that demonstrated IPV to be more common among certain demographic groups, including marginalized and disempowered women, women with lower incomes, women with disabilities [31, 32], and women who live in semi-urban or rural areas [6]. The abundant body of literature on HIV highlights that disease-associated stigma and discrimination are at the root of the IPV problem among women living with HIV [8, 10]. Our research however indicates that IPV among women living with podoconiosis is also heavily associated with these women’s decreased ability to fulfill the traditional gender roles in their respective households–coupled with men’s frustration at being married to an ‘unhealthy’ woman who struggles to fulfill their expectations of what ‘a woman should do’. Indeed, our findings are consistent with other regional studies focused on the intersection across IPV-disability-gender relations in that women living with this debilitating and disabling disease are expected to nevertheless fulfill the traditional gender roles in their households [32] and in that failure to complete household chores triggers episodes of IPV. Increasing local awareness of this debilitating disease, tackling the deeply rooted gendered roles and expectations at the household level and successfully challenging these women’s status quo in their households are urgent avenues for action.

Together with women’s reduced ability to work, poverty-related scarcities, the lack of formal IPV detection and management infrastructures and the general understanding of podoconiosis as a punishment from God or the result of magic forces, stigma is at the root of the complex relationship between podoconiosis and IPV. In endemic areas, podoconiosis is one of the commonest causes of stigmatization [12, 15]. The present study highlights the link between prejudice and discrimination against women living with podoconiosis, and shows that stigma is commonly enacted in the form of deprivation of emotional and material support [16, 17]. It also shows how intra-household discrimination and the associated deprivations faced by these women are a reflection of stigma against women (with or without debilitating diseases) in the broader society [32]. In order to truly limit disability and promote the wellbeing of women affected by podoconiosis proposed solutions therefore need to include societal level interventions regarding gender equality and women’s rights and entitlements.

Studies indicate that intimate partner violence is linked to several adverse health behaviors, chronic health conditions and mental health conditions, even after adjusting for demographic characteristics [33, 34]. Intimate partner violence among people living with podoconiosis is, therefore, also important because it influences disease outcome. The causal mechanism behind this lies in reduced access to resources (e.g. water and healthcare), but also on the effects of restricted decision-making of the affected women. Self-care is known to be a key determinant of outcomes in podoconiosis [35] and, as demonstrated, it is largely impeded by IPV. In turn, the negative impacts of IPV and podoconiosis on family members help perpetuate the conditions of poverty that often determine the onset of the disease. The development of accessible IPV prevention and management interventions is key for improving disease outcomes and for preventing disease onset in the region.

Many issues affect the relationship of IPV and podoconiosis, including the social acceptance of this issue in Ethiopia and the high alcohol consumption characteristic of the partners of the interviewed participants. As demonstrated, disease onset is not the main determinant of alcohol consumption but episodes of violence often occurred after partners had consumed alcohol. Our study also suggests that podoconiosis onset has influenced a transition from physical to psychological and financial violence. Podoconiosis has seemingly increased psychological violence and bullying despite the fact that physical violence commenced before most women suffered from podoconiosis. In fact, although IPV violence is tolerated amongst certain groups, physical violence against visibly diseased people is widely disapproved of, which could explain this transition. Tackling the high levels of alcohol consumption in the region is key for decreasing IPV, for improving disease outcomes and for preventing disease onset.

In this study, women’s experiences constituted “narratives of tolerance”. That is to say, women and members of their immediate social circles tolerated IPV, particularly in its early stages. When IPV became more severe, tolerance continued, even where there was cheating and abandonment. At these times women considered alternative pathways–for example, leaving home–but there were practical impediments to this. One reason for this was an overwhelming desire to prioritize the welfare of their children. A further driver was a downward socio-economic spiral where harvest produce, household income and social support decreased such that resources for change were minimal. Finally, there was evidence that belief in podoconiosis as divine punishment motivated tolerance. In addition to developing accessible IPV prevention and management interventions, there is an urgent need to tackle disease-associated taboo and stigma (e.g. through the development of educational programs focused on disease causation and disability management) and to develop sustainable strategies aimed at improving the socio-economic assets of women living with podoconiosis (e.g. housing and disability benefits, unemployment benefits, creation of livelihood opportunities for women with disabilities and of community-based support groups).

Other studies have shown that women tolerate IPV for the wellbeing of their children, and remain in the home for the sake of their children [36, 37] whilst hoping that the partner will change [30, 38]. Our research indicates that other reasons that prompt women to stay in violent relationships include fear of retaliation, lack of alternative means of economic support, lack of disability or unemployment benefits, lack of support from family and friends, stigma or fear of losing custody of children. Despite these barriers, many abused women eventually do leave their partners, often after multiple attempts and years of violence. In the WHO multi-country study, 19–51% of women who had ever been physically abused by their partner had left home for at least one night, and 8–21% had left two to five times [21, 30]. Factors associated with a woman trying to leave an abusive partner permanently appear to include an escalation in violence severity, a realization that her partner will not change, the existence of supportive networks (formal or informal) [39], access to formal or informal sources of economic support [40] and women’s recognition that the violence is affecting their children [36, 38]. However, in the study region, in face of seriously diminished supportive networks and the downward socio-economic spiral faced by women and their dependents after leaving the household, as shown, women often return to their abusive partners.

To our knowledge this is the first study to address the issue of IPV among women living with podoconiosis, but there is a dearth of information on the relationship between IPV and NTDs more generally. Given the aims of this study and its context-specificity, findings are not directly applicable to other contexts in which podoconiosis is prevalent, nor to other NTDs. More research is needed before useful generalizations can be promoted. More research is also needed to recognize the prevalence and burden of IPV among women living with podoconiosis compared to the general population, and to fully understand the complex intersections between IPV, disability, gender and poverty. Our study indeed highlights new avenues for action that can help limit disability and promote the wellbeing of people affected by podoconiosis in the study region (see above), but more research is needed for developing evidence-based tools to facilitate these changes in the study region. Further ways forward include the development of sustainable solutions to the problem of IPV amongst women living with long-term, disabling conditions in Ethiopia and beyond.

Conclusion

Intimate partner violence is frequent among women affected by podoconiosis. The types of violence experienced by the women interviewed included psychological violence, physical violence, sexual punishment and diverse controlling behaviors. Women used different coping mechanisms and responded to intimate partner violence in different ways–heavily influenced by the impact of their circumstances on their mental wellbeing and self-esteem, the age of their children, their economic assets and by the support received from their inner circles. This study adds to the literature that women with podoconiosis are vulnerable to intimate partner violence and that IPV in turn worsens disease outcomes in many ways. However, income uncertainty and low employability due to the debilitating effects of podoconiosis often drive women to stay in abusive relationships. Tackling disease-associated taboo and stigma, developing accessible IPV interventions, working towards greater gender equality at the household and societal levels and developing sustainable strategies for improving the socio-economic assets of women affected by podoconiosis are all necessary to both prevent IPV and improve disease outcome.