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(Re)positioning communication for enhanced multidrug-resistant tuberculosis treatment adherence in South Africa: towards an integrated communication model for young women.

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Existing literature itself recognizes the inadequacy of the biomedical approach to reduce the burden of tuberculosis in epidemic countries such as South Africa (Daftary et al. 2015). The aim is to contribute knowledge to the underdeveloped field of non-biomedical responses to suboptimal adherence to long-term DR-TB treatment in areas with a high TB/HIV burden (O'Donnell et al. 2017).

ACRONYMS

ACKNOWLEDGEMENTS

CHAPTER ONE INTRODUCTION

The requirement to improve adherence to MDR-TB treatment is so urgent that guidelines in the South African National Tuberculosis Management Guidelines (2014) (South African National Department of Health 2014) mandate health care workers to adopt an approach patient-centred to uncover individual barriers to adherence and use consultations to educate patients about treatment (South African National Department of Health 2014:53). As previously explained, MDR-TB and XDR-TB are under the umbrella term DR-TB.

CHAPTER TWO

HISTORICAL DEVELOPMENT OF DRUG-RESISTANT TB AND CONTEMPORARY CHALLENGES OF

The result was large inequalities in the health status of different population groups, inequalities which persist (van Rensburg et al. 2005). Villemin also noted that crowded urban areas tended to record higher incidence of TB (Barberis et al. 2017).

Figure 1: High TB/HIV and MDR-TB endemic countries globally
Figure 1: High TB/HIV and MDR-TB endemic countries globally

CHAPTER THREE

CONTEMPORARY COMMUNICATION RESPONSES TO THE MDR-TB CHALLENGE

Finally, health communication fully emerged as a distinct area in the 1970s (Kreps et al. 1998) and is firmly established at the core of public health practice. Research in this area occurs at (i) intrapersonal, (ii) interpersonal, (iii) group, (iv) organizational, and (v) societal levels (Storey et al. 2014; The 1959 study, however, contributed to psychology - It influenced the Health Belief Model (Hochbaum 1958; subsequently modified by other authors) in the arsenal of public health communication research (Kar et al. 2001, Rosenstock 1974).

Health promotion aims to build agency in individuals and bring about social change (Cross et al. 2017). Some scholars claim that patient empowerment is an integral part of increasing TB and MDR-TB treatment completion and success rates (de Oliveira and Lefèvre 2017; Fagundez et al. 2016; as well as the insufficient health education and mass-mediated communication about MDR-TB in South Africa later in this chapter established that additional factors further reduce the impact of the limited public health communication (Munro et al. 2007).

CHAPTER FOUR

MDR-TB COMMUNICATION CHALLENGES AND REASONS FOR YOUNG WOMEN’S SUB-OPTIMAL

ADHERENCE TO TREATMENT

The literature generally associates high incidence of MDR-TB with higher numbers of new infections than the healthcare infrastructure can handle; low identification, diagnosis and retention of patients in care; poor patient outcomes; and the development and spread of DR-TB (Shah et al. 2017; Kerantzas and Jacobs 2017). Interrupting or stopping treatment has serious consequences for patients, their families, caregivers and others with whom they have regular contact; who can consequently contract an MDR-TB infection (Kigozi et al. 2017). It is not very difficult to stop the contagiousness of MDR-TB; South Africa's National TB Management Guidelines (2014) state that if treated correctly, patients should be less infectious within two weeks of starting treatment (Kigozi et al. 2017).

For treatment to be effective, patients must be started on appropriate medication within two days of diagnosis and maintain such treatment for the prescribed period (Celone 2012; Kigozi et al. 2017). It is imperative to first understand the causes of suboptimal adherence from the patient's perspective if interventions are to help improve MDR-TB treatment adherence among vulnerable populations (Matebesi and Timmerman 2012). This chapter examines why young women from marginalized communities may struggle to stay on prescribed MDR-TB treatment.

Causes for young women’s sub-optimal adherence to treatment

A male TB patient may reduce correct diagnoses of TB in women visiting health facilities (Smith et al. 2016). Significantly, women may be disproportionately susceptible to infection with primary MDR-TB from participating in gendered caregiving roles (Smith et al. 2016). Prolonged MDR-TB treatment can easily deplete the financial resources of poor families as they support their family member in treatment (Maswangayi et al. 2014).

People with MDR-TB self-stigmatize and isolate themselves, seeing themselves as vectors or transmitters of the disease, with negative impacts on their treatment (Dias et al. 2013). Families should support people with MDR-TB during treatment (Maswangayi et al. 2014; Sukumani et al. 2012). Treatment of side effects can be expensive and many patients from low socio-economic backgrounds cannot afford the remedies (Maswangayi et al. 2014).

Figure 8: A typical profile of a patient most likely to adhere to MDR-TB treatment
Figure 8: A typical profile of a patient most likely to adhere to MDR-TB treatment

CHAPTER FIVE

HEALTH COMMUNICATION CONCEPTUAL FRAMEWORK

This finding informs this study's connection of knowledge gap theory to two-step flow and multi-step flow theory, as explained later in this chapter. The theory is useful for explaining whether and how young women from marginalized contexts access mass-mediated information about MDR-TB. Instead, it supports the investigation of how much of the limited TB/MDR-TB health promotion content discussed in Chapter Four is accessible to the defined vulnerable population that is the focus of this study.

This understanding furthers this study's goal of understanding how young women access, understand, and retain MDR-TB information disseminated through mass media. This study confirms that health communication and health promotion are necessary to improve the low knowledge of MDR-TB patients and others about treatment and basic infection prevention measures (Mishra et al. 2014). In this study, the communication perspective is foregrounded as 'the cornerstone of any patient-practitioner relationship' (Munro et al. 2007a:57).

Figure 10: Relationship between theories and research objectives and questions
Figure 10: Relationship between theories and research objectives and questions

CHAPTER SIX

Three nurses at different levels in the MDR-TB unit at King Dinuzulu Hospital: professional. Young women with MDR-TB who agreed to participate in a focus group discussion were asked to identify prospective participants to participate in key respondent interviews. Using this strategy, household contacts of women with MDR-TB were identified and included in the study.

In this way, the recruitment of patients treated for MDR-TB took place both in the DR-TB unit at King Dinuzulu Hospital and in patients' homes as part of a parallel but connected process. Three household contacts currently or previously living in the same household as young women receiving treatment for MDR-TB also contributed to the study. I felt it was important to remain as "blind" as possible to facts unrelated to the research prior to focus group discussions with women with MDR-TB (Freedman, Carlsmith, and Sears 1974).

Figure 13: Relationship between epistemology, theoretical perspectives,  methodology and research methods
Figure 13: Relationship between epistemology, theoretical perspectives, methodology and research methods

CHAPTER SEVEN

DATA ANALYSIS PROCEDURE AND DISCUSSION OF NASCENT FINDINGS

Immersion in and familiarisation with the findings

In the early days of HIV we had a lot of money for education and we did so much with it. It is important to explain that due to the homogeneity of roles of nurses at different grades in the DR-TB unit at King Dinuzulu Hospital, commonalities in the information they provided and themes emerging from their contributions were already evident at this stage. We use the TV in the outside area to provide information on how to produce sputum and how long the treatment is.

Themes were linked to each other and to the content in the literature review and conceptual framework chapters and analyzed in the context of the extent to which they helped to initially address research questions 1 and 2. This insight led to the revision of questions in the research guides that were too technical and/or at too high an academic level and therefore inaccessible to the 'typical' vulnerable young women with MDR-TB in eThekwini Metro as described in Chapter Four . Some questions were consequently simplified to shorten and clarify lines of inquiry in the research guides.

Figure 17: Preliminary reading of transcripts, data analysis and coding
Figure 17: Preliminary reading of transcripts, data analysis and coding

Generating initial codes

Interesting or unfamiliar terms were included in the expectation that they might result in unique analytical categories emerging later in the process (Pope et al. 2000). Some unique findings identified through this process and how they influenced changes in research approach are discussed in this chapter. The advancement of new or novel findings to understand the complexities influencing suboptimal adherence of a vulnerable population to MDR-TB treatment depended on the questions asked of the research participants and the connections and understandings made to the findings during the analysis of the data.

It is important to clarify here that many of the broad themes that emerged from the preliminary data analysis in the early stages have been addressed in the literature review chapters of this dissertation. In addition to a lack of knowledge about the scientific incentive and national interest in determining the prevalence of tuberculosis in the country and the importance of broad participation, enrollment was affected by low communication and public awareness of the survey process. Low survey participation was common in affluent neighborhoods and areas where the majority of residents were not black.

Searching for themes

Rush to treat MDR-TB Poor attitudes of health workers Fear of hospital infection Lack of confidentiality Stigma. Referring to the context of enhanced communication about MDR-TB discussed in Step 2, it was considered important to first determine the perceived seriousness of MDR-TB in eThekwini Metro in 2018. This was achieved at the outset; where an interview participant confirmed that "It's a known thing, MDR-TB is not alone from failure now".

These findings confirm the importance of primary MDR-TB as a public health challenge that received attention from stakeholders in the field at the time the data were collected. They were useful in assessing participants' knowledge of primary MDR-TB and their ability to clearly convey this information to patients in a way they could understand. Vulnerable women's agency in intimate relationships with men is reportedly reduced, contributing to their suboptimal adherence to MDR-TB medications.

Table 5: Narrowed codes from initial coding – searching for themes
Table 5: Narrowed codes from initial coding – searching for themes

Reviewing themes

Indexing the data in this way led to the creation of numerous 'fuzzy categories' or data elements as illustrated in the word cloud in Figure 17. This required the data to be further narrowed down by more grouping of themes and naming them in the penultimate data analysis step, as explained in the section below. The themes illustrated in the word cloud in Figure 18 are significant as they inform and provide the framework for the presentation of comprehensive research findings in Chapters Eight and Nine.

From my reading of these multiple sources of data, broad themes defined by vulnerability could be extracted that influence whether vulnerable young women aged 18–34 years with MDR-TB are able to fully adhere to their treatment over the long term. An iterative process of data analysis and synthesis was used for its usefulness in supporting the development of detailed descriptions and a rounded understanding of the perspectives presented in the next chapter, which is also step 6 – report writing – in Braun and Clark's (2006) six-step process. . The theories discussed in Chapter Five were used as guidelines in identifying themes and linking data sets to record the findings presented in the next three chapters.

Figure  18:  Reasons  for  young  women
Figure 18: Reasons for young women's low adherence to MDR-TB treatment in eThekwini Metro

CHAPTER EIGHT

VULNERABILITY IN STRONG CULTURAL CONTEXTS: CHALLENGES TO YOUNG WOMEN’S

ADHERENCE TO TREATMENT FOR MDR-TB

Gambar

Figure 1: High TB/HIV and MDR-TB endemic countries globally
Figure 2: DR-TB diagnosis and treatment cascade: Global
Figure 3: Burden of TB (2017) in eThekwini Metro
Figure 4: Population of eThekwini Metro (2017)
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