1.5 The outer circles: how culture and
context shape experience of disease
and health service delivery

Elements presented in the outer circles of the intersectionality wheel are as important as those within the inner circle as they are mutually reinforcing, and they interact to shape our understandings and interpretations of illness and disease. Social and historical forces, ableism, discrimination, sexism, etc. can all shape how individuals, communities and health systems develop and respond to disease, ultimately influencing experiences and outcomes (1).

1.5.1 Disease experience

Etiology of disease (i.e. the cause of disease), as perceived by communities, has been described as shaping the lived experiences of affected individuals, as it has been shown to induce both enacted and internalized stigma.

Explanatory models or cultural explanations of disease and illness can shape care seeking as well as peoples’ experience of living with different diseases; in turn these socially routed perceptions of disease and illness often intersect with other factors to shape health outcomes.

• For example, in India, there is a perception that lymphatic filariasis is hereditary in women and is therefore not recognized as a condition that can be treated clinically; this causes a delay in presentation at health facilities (26).

• In Ghana, the same hereditary assumptions exist but in this context in relation to men (16). Lu et al. (1988) found within the Philippines that enacted stigma experience increased with disease progression of lymphatic filariasis and resultant lymphedema or hydrocele. In addition, the location of hydrocele in relation to lymphatic filariasis also caused increased stigma, which was greater when it was in the genitals as opposed to the leg (27).

Although inequities and their influence on stigma in relation to infectious diseases of poverty have been relatively widely considered, studies that explore how these inequities interact to shape multiple layers of simultaneous advantage and disadvantage are limited.

Schistosomiasis is often perceived to be associated with promiscuity, based on signs and symptoms in the urinary tract; however, this is not the case for diseases such as lymphatic filariasis and leprosy. Rather, more physically visible diseases are perceived to be hereditary and therefore stigmatization tends to be linked to moral constructions of disability that suggest impairment is the result of wrongdoing in a previous life (28).

Disembodiment (a separation of physical body and soul by an individual) was also often associated with internalized and anticipated stigmatization. This was evidenced by observed covering of limbs or lack of their use. Disembodiment is particularly evident when disease or impairment was acquired in adulthood, since prototypes of health, normalization and ableism were often learned from a young age (13).

One study notes that when individuals are poor because of reduced income, being young and a woman led to increased levels of enacted stigma (29). Box 1 ► illustrates from an intersectional standpoint how stigma associated with infectious diseases of poverty can shape unique circumstances of individuals and households.

1.5.2 Health service delivery

The way health systems are designed is shaped by forces in the outer wheel and do not always recognize, consider or address what is in the inner wheels Figure 1 ►. This can influence both patient and health systems delay in the treatment and management of infectious diseases of poverty for men, women and people with non-binary identities, thus impacting on health outcomes (33).

The case study in Box 2 ► emphasizes how changes in health systems governance (devolution) can lead to alterations in power that result in health advantage and disadvantage for vulnerable populations.

Historically, there has been a large emphasis on women within TB research, and the reasons for delays and losses along the care seeking pathway for men are under investigated. Addressing them is essential in ensuring effective and equitable treatment as emphasized in the End TB strategy.

A recent review of global evidence suggests that the way existing TB services are established prioritizes case identification in women, suggesting they are more likely to have a timely TB diagnosis than men (34). Some studies indicate that being a man is a specific risk factor for late HIV and TB diagnosis as well as death while on treatment (14). New evidence also indicates that men are more likely to be lost along the TB care seeking pathway (ibid). Currently, it is hypothesized that untreated infection in men is acting as a ‘TB reservoir’ and is the reason for most new TB infections in men, women and children due to less constricted social mixing among men in most endemic settings (14,34).

Despite this, in some contexts, earlier research with women in relation to care seeking for TB has shown that reliance on passive case finding can lead to treatment delays for women, with age being a key intersecting factor with gender in exacerbating these delays (33). This would suggest a need for further research that not only explores how to better engage men and women within the TB health seeking pathway, but also how other intersecting factors such as age and geography may require nuanced strategies to address these barriers in the control and management of new TB infection.

Design and delivery of treatment campaigns for many Neglected Tropical Disease (NTDs), particularly those controlled through preventive chemotherapy treatment, can mean that some women remain untreated for most of their reproductive years.

Pregnant and lactating women are usually excluded from mass drug treatment campaigns due to safety concerns, even though praziquantel for the treatment of schistosomiasis was recommended for pregnant women by WHO in 2002 (35). Women living in schistosomiasis endemic areas may spend up to 25% of their reproductive years pregnant and another 60% of this time lactating (36).

Women who repeatedly miss treatment due to pregnancy and breastfeeding may be more susceptible to organ damage and cancer due to chronic schistosomiasis infection (36). Medicines for other preventive chemotherapy NTDs such as lymphatic filariasis and onchocerciasis cannot safely be administered in pregnancy, with consequent higher risk of infection for women who are pregnant during annual medicine distribution campaigns (37). Treatment strategies need to be adapted to consider how to reach pregnant and lactating women to minimize the risk of NTD infection to both mothers and babies.

• For example, mothers living with onchocercal skin disease have reported reducing the period they breastfeed due to itching (38). Pregnant women are also at added risk of hookworm anaemia, which is further compounded by coinfections from malaria, consequently increasing risk of maternal death or premature birth (39,40).

Gender also effects the acceptability of health services in terms of staffing.

• For example, in Uganda, older men were less likely to take drugs when they are provided by young women drug distributors than if they were delivered by men or older women (36).

• In contrast, women community directed distributors in Nigeria were required where social norms forbade a man from entering the household without another man present. In this case, a woman community directed distributor would increase access to the household (41).

In addition, in some household studies, findings suggest that when men are absent from the household, for example when working outside the community, this can have a positive impact on the uptake of drugs for the rest of the household. When men who often function as key decision-makers in the household are absent, women have a higher level of autonomy in deciding whether to take medicines.

Table 1 ► is a summary of the information above that explores how gender and other social axes intersect to shape risk and vulnerability to different infectious diseases of poverty in varying ways.