Reasons for patients’ failures or refusals to adhere to treatment are complicated but can be explained as being due to ‘modifiable and unmodifiable factors’ (Pasma et al.
2014). This section discusses some modifiable factors, with reference to social and psychological drivers and determinants of MDR-TB disease and non-adherence to treatment, which are generally neglected in research and practice (Naidoo et al. 2016).
Although they are inexorably linked and contribute to treatment adherence challenges among young women from marginalised contexts, some factors discussed below remain outside of the scope of this research to address. They are presented insofar as they are deemed important for supporting understanding of lay perceptions that impact health-seeking behaviour and sub-optimal adherence among young female MDR-TB patients (Naidoo et al. 2016). By understanding these factors, this study argues that it may be possible to develop a communication model adequate enough to address some of them in ways that contribute to reducing negative treatment outcomes among this population.
Not inherently non-adherent: Characteristics of the patient most likely to adhere to treatment
This study seeks to explore how the KwaZulu-Natal MDR-TB programme can be supported to enhance treatment adherence rates among young women in eThekwini Metro by strategically employing and integrating communication methods specific to the characteristics and contexts of this case study in this specific environment. It is understood that TB patients are not fundamentally non-adherent, and that enhanced treatment education and support designed to complement biomedical interventions can improve treatment completion rates (Kigozi et al. 2017; Daftary et al. 2015;
O’Donnell 2014; Dias et al. 2013). Pasma et al. (2014) argue that early profiling of potentially non-adherent patients being treated for chronic and serious diseases is the first step to helping struggling patients stay on treatment and monitoring to ensure that those likely to adhere to treatment do so. In line with this thinking, Figure 8 visually illustrates documented qualities that are protective of people with MDR-TB, which increase chances that they will remain on treatment.
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Figure 8: A typical profile of a patient most likely to adhere to MDR-TB treatment
Characteristics included in Figure 8 were extrapolated from literature discussed in detail below. Chief among these qualities are first time receiving treatment for TB, not currently living in the same household as someone with TB, and not resident in an urban area, especially marginalised communities characterised by poverty and overcrowding. Key predictors of knowledge about TB in South Africa are linked to participants’ race, sex, whether they completed high school, whether they are gainfully employed, and whether they had previously been diagnosed with and treated for TB (Naidoo et al. 2016; Fagundez et al. 2016).
First time being treated for TB
People being re-treated for TB are more likely to fail to adhere to treatment compared to those being treated for the first time (Kigozi et al. 2017; Fagundez et al.
2016; Van Den Boogaard et al. 2009; Terra and Bertolozzi 2008). This finding lends credence to arguments that the most important consideration in preventing drug- resistant disease is to cure patients at the first try (Variano 2013; Matebesi and Timmerman 2012). Naidoo et al. (2016) found that 90.9 per cent of people previously diagnosed with TB who contributed to their nationally representative study of over 5,000 participants in South Africa demonstrated significantly higher levels of knowledge about TB treatment and the fact that TB is curable than participants who had never had TB. The study demonstrates a positive correlation between high knowledge levels and participants having received information through verbal communication from a healthcare provider (Naidoo et al. 2016).
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Other studies established that patients who had lived with someone being treated for TB for a long time, and who have been treated for TB themselves still demonstrate significant misunderstandings about modes of transmission and treatment plans, leaving them more prone to taking treatment incorrectly, or abandoning it altogether (Maharaj et al. 2016; Matebesi and Timmerman 2012). If the latter is the case among re-treatment patients, knowledge among people being newly treated for MDR-TB could be assumed to be too inadequate to support long-term treatment adherence.
Indeed, a study with Brazilians successfully treated for TB found significant misconceptions about the disease among former patients who had regularly interacted with healthcare staff during six or more months of treatment until they were cured (Dias et al. 2013). Researchers insist that while communication is critical to effective TB management efforts, responsibility to disseminate appropriate communication should not be limited to healthcare professionals (Dias et al. 2013) and urge for more studies to address the question of ‘how’ TB prevention and treatment should be approached, a question this research aims to contribute to addressing.
While Naidoo et al.’s (2016) study discussed above is nationally representative, research by Maharaj et al. (2016) explained in the preceding paragraph is specific to KwaZulu-Natal province, and MDR-TB patients receiving treatment at King Dinuzulu Hospital. While national stakeholders might be more successful at communicating about MDR-TB and implementing interventions and campaigns in line with this understanding, the situation in eThekwini Metro needs more urgent and targeted attention. Discrepancies between findings by Naidoo et al. (2016), Maharaj et al. (2016) and Matebesi and Timmerman (2012) conceivably point to deficiencies in information provided to patients when they are initiated on treatment, or during subsequent follow-up visits.
This study takes these gaps into consideration as it aims to design and proffer a model to guide the (re)positioning of communication in responses to MDR-TB in resource constrained settings using eThekwini Metro in KwaZulu-Natal province as a case study. It is apt that this research seeks to understand experiences of young women with MDR-TB in eThekwini Metro, who account for 40.9 per cent of the total TB burden in the province (National Institute for Communicable Disease 2017). Women were selected as the case study of this research primarily based on findings that with the necessary support, they are more likely to adhere to and complete treatment than men are (Maharaj et al. 2016). A consideration of this research was to develop and proffer a communication dissemination model with potential to contribute to
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enhancing MDR-TB patients’ adherence to biomedical treatment. Based on the foregoing explanation, women are a good case study to achieve this objective.
Being female, a child or resident in a rural area
Some studies find that women, children and inhabitants of rural areas are more likely to adhere to TB treatment (Van Den Boogaard et al. 2009; Wang et al. 2008; Munro et al. 2007b). The understanding is that experiencing stigma motivates women to be cured of TB, so they can stop visiting health facilities and living under the real or perceived gaze of members of their communities as they struggle with ill-health (Taylor-Abdulai 2015; Courtwright and Turner 2010). Studies also show that women’s elevated feelings of responsibility to get well enough to continue caring for children, parents or other family members, and to avoid spreading MDR-TB infection to children in their households account for their better adherence (Munro et al. 2007b).
Variano (2013) suggests that counselling patients about potential risks of MDR-TB infection to children, particularly those under five years-old, as they are discharged from inpatient treatment encourages greater adherence among women to minimise this risk. This motivation would particularly resonate with mothers, and young women with MDR-TB who reside in households with young children.
Older and more educated women of higher socioeconomic status
As well as maternal instinct, age is a factor in adherence. Women 24 years and older reportedly demonstrate better adherence than younger females (Kigozi et al. 2017).
Indeed, the 33.3 per cent reduction in TB incidence recorded in South Africa between 2004 and 2015 is reportedly attributable to NTP successes achieved among females aged 25 to 44 years (National Institute for Communicable Diseases 2017).
Additionally, as higher education levels are associated with superior socioeconomic status, lower station is arguably indicative of some patients’ reduced chances of successfully adhering to treatment plans (Naidoo et al. 2016; Fagundez et al. 2016).
Thus, older women with more education are more likely to adhere to treatment because they are better able to access and understand treatment education and apply it. Young marginalised women aged 18 to 34 years comprise the case study of this research, for its members’ potential to share nuanced and unanticipated reasons for non-adherence to MDR-TB medication that can be added to those already known about specific populations in-context.
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Multidrug-resistant TB and HIV co-infected patients who have disclosed their diagnosis
Insufficient understanding of transmission, prevention and treatment about a disease energises fears, stigma and discrimination about it (Dias et al. 2013; Sukumani et al.
2012). Studies demonstrate that where family and others in a community have little knowledge about TB and HIV and their epidemiology, stigma and discrimination directed at patients is likely to be elevated (Dias et al. 2013; Glynn et al. 2001) particularly in urban areas (Gugssa et al. 2017). In some studies, being HIV positive is correlated with better adherence to anti-TB medications, especially among more highly educated patients (Maharaj et al. 2016; O’Donnell 2014). However, better adherence to TB treatment among people also taking ART is only true for patients who have disclosed their HIV status to family (Kigozi et al. 2017; Terra and Bertolozzi 2008). This finding substantiates assertions that family support aids internal and external stigma reduction for improved treatment adherence among patients with chronic and infectious diseases (Dias et al. 2013; Sukumani et al. 2012).
It is important to note the lack of concurrence in studies that probe patterns in adherence to both anti-TB medication and ART among co-infected patients. While some document preference for ART over TB treatment (Daftary et al. 2014), others find that patients are more adherent to anti-TB treatment than ART (Bionghi et al.
2018; Mazinyo et al. 2016). Still others report that living with HIV is significantly correlated to low adherence, a finding they attribute to the large quantities of medications patients must take for both diseases (Adane et al. 2012). It may be that patients being treated for two diseases focus on the one with the shorter-term regimen, and thus abandon ART while taking anti-TB treatment (Daftary et al. 2014;
Terra and Bertolozzi 2008).
Other studies report converse findings; that patients being treated for DR-TB and HIV co-infection are significantly more likely to adhere to ART, compared to anti-TB medications during the first six months of DR-TB treatment (Daftary et al. 2015;
O’Donnell et al. 2014). Literature in line with this argument demonstrates that uptake of and retention on ART among TB/HIV co-infected patients in South Africa is above 75 per cent (Shah et al. 2017; Maharaj et al. 2016); an earlier study put the figure at 71 per cent, indicating an increase over years (Narasimooloo and Ross 2012). It is acknowledged that the higher number of drugs taken daily by TB patients, which are more toxic and generally less tolerable than ART, contribute to low adherence to TB
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treatment as opposed to that for HIV (Kigozi et al. 2017; Daftary et al. 2014; Adane et al. 2012).
Some advance arguments that preference for ART is a result of motivational counselling and treatment adherence interventions on the HIV side being more superior than those offered to TB patients (Kigozi et al. 2017; Terra and Bertolozzi 2008). Specifically, the ‘empowerment approach’ adopted by HIV programmes, incorporating as it does patient education, treatment literacy, adherence counselling and self-management support while taking treatment is in direct contrast to the routine monitoring of patients taking anti-TB treatment (Mazinyo et al. 2016:10) and reportedly results in better outcomes (Daftary et al. 2015; Terra and Bertolozzi 2008).
While contradictory, these findings urge for researchers to consider how what is known about HIV treatment can be applied to the management of MDR-TB in eThekwini. Further, beyond collective reasons, it is also necessary to dig deeper to understand individual motivations for why people within a specific context taking long- term treatment for a serious disease like MDR-TB may succeed or fail in adhering to treatment, as this study attempts to do below.
Individual patient characteristics
For research in the human sciences such as this, it is necessary to transcend prosaic considerations of when, how often, for what duration and why patients do not take prescribed MDR-TB medication, to foreground the heterogeneity of individual patients, even those situated in similar socioeconomic contexts (Bertolozzi 2008) and with characteristics such as gender, race, age and culture in common. This understanding influences how non-adherence can be addressed, as this study cannot assume that the personal narratives of all women with MDR-TB being treated at King Dinuzulu Hospital would be invariable, even though they might bear similarities.
Experiences of women with MDR-TB differ, impacted as they are by divergent life experiences, and ways of responding to ill-health.
Additional factors, among them alcohol and drug abuse, mental illness, homelessness, religious convictions, personal motivations and being a migrant, all affect individuals’
abilities to adhere to TB treatment (Munro et al. 2007b). Attitudes and personal circumstances of individual patients cannot be underestimated, as they can have more significance to treatment adherence than increased knowledge. Scholars recommend that interventions expand beyond providing MDR-TB information to convince patients to take treatment, and instead implement campaigns and programmes aimed at
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increasing knowledge and sparking behaviour change among patients and communities (Maharaj et al. 2016; Michau et al. 2014). It is apposite, therefore, to contemplate how personal characters of individuals can determine adherence behaviour. These are considered together with other factors discussed in this section, chief among them participants’ gender and their experiences of MDR-TB treatment within their culture, in the findings presented in Chapter Eight.
Gender-based experiences with MDR-TB treatment
It would be remiss of this study not to consider gender, a dynamic and context-specific social construct as it may be, as a key mediator for women’s relationships with their health, healthcare providers, and MDR-TB treatment. Morgan et al. (2016:1) defines gender as ‘… the socially constructed roles, behaviours, activities and attributes that a given society considers appropriate for males, females and other genders and which affect how people live, work and relate to each other at all levels, including in relation to the health system’. Analysis of TB infection patterns, management and treatment makes for interesting reading. While HIV, which is linked to TB infection, affects more women than men in southern Africa, significantly more men than women aged 35+
years have TB, although data indicates greater parity between the sexes in infection rates in people aged 15 years and younger (WHO 2016).
In 2016, TB was the number three natural cause of death of women in South Africa, and the leading reason among men (WHO 2016). Men in Africa are reportedly more prone to developing TB because they are more exposed to TB bacilli in their daily lives, and more susceptible to developing TB disease due to biological makeup. On the other hand, there are suggestions that high mortality and lower reported TB incidence among women stems from under-reporting of symptoms due to fears of social isolation caused by the highly infectious nature of TB, and its associations with HIV (Smith et al. 2016; Vlasoff 2007). Highlighting the link between HIV and TB established in Chapter Two is important, especially considering findings that where a smear-positive TB diagnosis in women occurs, it can generally be connected back to the disproportionate burden of HIV among women, and in particular young women in South Africa (Smith et al. 2016).
Considering gender-determined factors in TB infection and treatment adherence is important for this study, which seeks to understand ways in which young women with MDR-TB situated in a patriarchal society with strong cultural beliefs about women’s submissiveness relate with and respond to their healthcare providers and MDR-TB
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treatment. Indeed, scholars such as Munro et al. (2007b) insist that research is needed to understand how gender, among other factors, influences and/or impacts TB patients’ adherence to treatment and to inform the (re)design of support systems so they better respond to patients’ needs. As argued in Chapter One, it is important to apply a gender lens to TB studies as consequences of communicable diseases are influenced by sex and gender considerations, to result in different health outcomes for males and females (Shah et al. 2017; Fagundez et al. 2016; Maharaj et al. 2016;
Vlasoff 2007).
For instance, poor women in developing countries reportedly delay seeking treatment from a healthcare facility until they experience severe symptoms, while visiting traditional healers or local pharmacies for care (Variano 2013; Vlasoff 2007). Studies in the Gambia, India and Viet Nam found that women prefer consulting traditional health practitioners, pharmacies and private providers because of their greater convenience, proximity and privacy (Smith et al. 2016). The flexible payment methods and timelines of traditional health practitioners, and the ease with which ailments and treatments are explained, compared to the scientific explanations given in healthcare facilities, are significant pull-factors to alternative sources of care (Vlasoff 2007).
Reliance on other care institutions is also linked to poor socioeconomic status as women, more than men, often cannot afford to access modern medical services as soon as they experience symptoms.
Highlighting sex differences in TB health-seeking behaviour and diagnosis in primary healthcare facilities in South Africa, some researchers found that although women are more likely to seek care for a cough of less than two weeks when compared to men, they are less likely to be asked for a sputum sample, and less likely to have a positive sputum sample when tested (Smith et al. 2016). Women are more likely to deliver poor samples, because of their more genteel approach to coughing and sputum generation (Smith et al. 2016). These concerns are compounded by systematic socioeconomic and cultural biases which may undermine efforts to correctly diagnosis TB in women. For instance, stereotypes held by healthcare workers about the ‘typical’
TB patient being male may reduce correct diagnoses of TB in women who visit healthcare facilities (Smith et al. 2016). It is not uncommon for women to be treated in ways that make them feel inferior and without agency when they do visit health facilities, creating situations where a population with the greatest need for health services receives the least support (Vlasoff 2007).
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Because of these varied factors, women with MDR-TB from low income backgrounds may delay seeking care (Naidoo and Taylor 2013), even when they have symptoms, and experience late diagnoses and initiation on appropriate treatment, which may discourage them from utilising healthcare services. Because of these complications, women may also take longer to recover, and because of family and societal expectations, they often return to their normal duties before they are completely healed, further compromising their recovery (Vlasoff 2007). It is significant that women may be disproportionately susceptible to infection with primary MDR-TB from participating in gender-determined caregiving roles (Smith et al. 2016). Indeed, women in Equatorial Guinea were more likely than men to indicate previous or ongoing contact with a TB patient as a possible source of their TB; 41 per cent of participants reported having contact with a family member currently or previously diagnosed with TB (Fagundez et al. 2016). Requirements for women to care for ill family members are based on tradition, as well as concerns about household finances, with poorer families less able to afford costs associated with MDR-TB treatment, which some household members must cushion. Lower socioeconomic status also impacts adherence to treatment, as discussed below.
Financial insecurity and poor socioeconomic conditions
Treating MDR-TB requires hospitalisation for long periods in some instances and involves numerous visits to health facilities in all. The lengthy treatment timelines are financially taxing for patients, many of whom do not have money for transport to go to a hospital when required to do so. Prolonged MDR-TB treatment can easily exhaust the financial resources of poor families as they support their family member on treatment (Maswangayi et al. 2014). Subordinate incomes resulting from women’s lower participation in formal employment and subsequent diminished autonomy in decision-making also contribute to lower health-seeking behaviour and poorer outcomes for serious diseases among women, who are not always able to afford to pay for services (Vlasoff 2007).
While it can be argued that since TB treatment in South Africa is free of charge costs should not present a barrier to accessing timely healthcare services, for many women in marginalised communities, meeting hidden costs of MDR-TB treatment (i.e. for transportation, or to pay for childcare while they visit a health facility), is beyond their capability (Tang and Squire 2005 in Maswangayi et al. 2014). In some patriarchal families like those of the Zulu, gender norms and power relations between men and women result in women’s restricted freedom of movement and association and curtail their