DATA ANALYSIS PROCEDURE AND DISCUSSION OF NASCENT FINDINGS
Step 3: Searching for themes
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The events in 2017 and 2018 discussed above were significant to this study because they contributed to higher than usual coverage of TB in mass media for a year between August 2017 and September 2018. The events also illustrate the multiple and oft- changing priorities of TB stakeholders in South Africa during this period. This study was conceptualised in 2017 when addressing MDR-TB in eThekwini was an urgent priority of the NTP, sparked by Shah et al.’s (2017) study, but data was collected in 2018 when national attention had shifted back to TB broadly, and was divided among the four enterprises (excluding Miss South Africa’s campaign) discussed above and others. I use this explanation to sign-post that external events had bearing on how I approached the analysis of data for this research.
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Table 5: Narrowed codes from initial coding – searching for themes
Theme: Socioeconomic factors
(Linked to patient’s gender, race, age and geographic location)
Codes Poverty
Overcrowded accommodation Poor housing
Greater risk of infection Unemployment Employment
No employment protections Food insecurity
Vulnerability Transport fees
Poor access to health services
Poor treatment at health service due to marginalisation
Greater healthcare needs
Co-morbid conditions + risk of infection About to complete treatment
Communication issues Illiteracy
Low formal education
Unable to follow treatment instructions Unable to ask relevant questions
Poor agency, affecting ability to be own health advocate
Less sensitivity towards women patients
Theme: Biomedical factors
Codes Pill burden Serious side effects Treatment fatigue Long treatment Physical pain Psychosis
Starting to feel better
Stopping only specific medication Co-morbidities
Communication issues
Aetiology of disease not adequately communicated
Patients inadequately counselled on treatment Stop-start approach to taking treatment Family/friends not counselled on how to support patients
Lack of knowledge about what each pill does Side effects explained
Side effects not explained
Differences of TB, MDR-TB and XDR-TB not well understood
Theme: Structural issues
Codes
Insufficient financial resources for communication
‘Rushing’ to treat MDR-TB Poor health worker attitudes Fear of nosocomial infection Lack of confidentiality Stigma
Long distance to health facility Lack of support at home Lack of government funding Communication assigned to workers
Theme: Gender considerations
Codes
Changes to physical appearance Feelings of shame and self-stigma Fear
Psychological distress Love, sex and marriage Gendered power dynamics Vulnerability
Reliance on men for livelihoods Intimate partner violence Reproductive capacities
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Cultural belief systems at odds with biomedical ideas
Judgement of young women
Communication issues
Poor education of healthcare workers about MDR-TB
Contradictory information given No time to educate/counsel patients Low empathy/sensitivity/compassion Lack of confidentiality
Failing to co-opt patients as equal partners in own treatment
Expectations on women’s productive capacities Denial among men
Patriarchy and male dominance Living alone
Lack of family support/still expected to provide Child-rearing
Abandoned by partner
Impact of treatment on social life Immaturity/youth
Communication issues Illiteracy
Low formal education
Traditionally conformist and non-questioning Low agency to act on knowledge
Little time to access information
Low resources to access information via other avenues
Theme: Communication & health literacy challenges & gaps Codes
Insufficient public knowledge about the disease broadly
Overwhelming to communicate MDR-TB to patients whose existing knowledge is low Difficulties communicating MDR-TB and its treatment in layman’s terms
Inadequate time to communicate at health facility
Communication left to volunteers as doctors and nurses are too busy Treatment literacy communication is not standardised or exhaustive
Low focus on patient’s support structures in communication
Patients are not considered equal stakeholder in their own treatment, expected to ‘comply’
Lack of privacy in public health facilities Modes of communication not ideal Low communication on MDR-TB via mass media Mass media is largely silent about TB, MDR-TB and XDR-TB
TB information is ‘boring’
Medium of communication Timing of communication Who is communicating
Approached methodologically and strictly, thematic analysis supports the presentation of valid findings derived from a replicable process (Nowell et al. 2017; Pope et al.
2000), which is why Tables 1 (in Appendix 12) and 2 are presented in their entirety in this thesis. Thematic analysis demands that the researcher remains cognisant of the importance of ‘identifying and describing both implicit and explicit ideas’ evident in the data (Guest et al. 2012:10). Crucially, the method ‘cannot and does not seek to focus
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on motivating or individual psychologies, but instead seeks to theorise the sociocultural contexts and structural conditions that enable the individual accounts that are provided’ (Braun and Clarke 2006:14), so care was taken in coding to consider what the findings might mean to vulnerable young women within the context of an urban, marginalised community in eThekwini Metro.
With reference to the context of enhanced communication about MDR-TB discussed in Step 2, it was deemed important to firstly establish the perceived seriousness of MDR-TB in eThekwini Metro in 2018. The aim was to establish whether participants who would be required to address questions about this phenomenon were aware of the rising incidence of primary transmission of MDR-TB and the threat it posed to public health in their communities at the onset. This was achieved early on; where an interview participant confirmed that ‘It’s a known thing, MDR-TB is not just from defaulting now. It’s from primary exposure, so people are catching it from somebody else for their first time around’ (R. Page, Interview, 6 March 2018). Another respondent explained that,
… a significant amount of the MDR-TB is [the result of] persons getting infected with MDR-TB, of being treated for MDR-TB for the first time. In the past we usually focused on – which is still relevant – that TB resistance is formed through non-compliance to medication, or inadequate treatment of clients. But we’ve seen that … we are having issues with infection prevention at community level, and even in households so that is why we see clients presenting for the first time with TB, but more so with MDR-TB (N.
Ngomane, Interview, 10 April 2018).
Data analysis clarified that research participants in all categories, not just senior personnel in the Department of Health mandated to manage the epidemic, were aware that transmitted resistance was a significant contributor to the burgeoning DR- TB epidemic in eThekwini Metro. In an individual interview with the volunteer health educator, she demonstrated knowledge about transmission of TB through her explanation that:
TB is contracted through the air. It could be through a window; you might not know who you are sitting next to. As the person coughs you catch the infection. You get both TBs the same way, even though they differ; sometimes by defaulting treatment of simple [sic] TB or not taking the complete treatment. You find that your immune system remains prone to TB because it has been robbed of healing, so it comes back as MDR-TB. (Volunteer, Interview, 24 May 2018)
These findings validate the significance of primary MDR-TB as a public health challenge that was receiving attention from stakeholders in the field at the time of collecting data. Findings at this stage also further substantiated the cogency of the research topic.
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They were useful for establishing participants’ knowledge about primary MDR-TB and ability to clearly communicate this information to patients in ways they could understand. It also situated volunteer health educators at King Dinuzulu Hospital as potential providers of enhanced MDR-TB treatment education and adherence support, particularly considering the inimical relationship between patients and nurses, as discussed in Chapter Four and presented as part of findings of this study in Chapter Eight. These interesting threads were followed in subsequent data collection events, particularly to ascertain who or which groups of people were best placed to communicate about TB.
Participants to this study generally demonstrated high awareness that MDR-TB can be transmitted. The documented low public knowledge and communication about TB in South African communities, however, still suggests that while people with MDR-TB and those directly affected, among them family members, healthcare providers, and Department of Health personnel, are knowledgeable about the drivers of the epidemic, people in the general population are not as informed. Reflections of a participant that ‘People automatically think that because you have MDR-TB you defaulted before’ (Nothando, 30 years, Interview, 29 September 2019) implies insufficient knowledge about the scale of primary resistance in eThekwini, particularly when compared to the awareness demonstrated by research participants. This finding pointed to the need for a two-pronged approach to public health communication about MDR-TB: one targeted at patients to increase their adherence to treatment and the other for the public to improve their knowledge about how to prevent and identify symptoms of MDR-TB and how the disease is treated. The latter was especially important to do because, as a key respondent explained:
TB is a hidden something. They share one or two things about it. Our government, I think, is too busy with other things. I think they are too busy because there should be awareness everywhere we go, but it’s not there (Nothando, 30 years, FGD#3, 29 September 2018).
Suggestions in findings of this study that dissemination of information to educate the public in eThekwini about MDR-TB transmission is insufficient urges for more deliberate efforts to improve communication and treatment adherence rates as an effective infection prevention strategy. A common thread running through findings read at this stage of data analysis were participants’ sentiments that inadequate dissemination of localised information had negative consequences for individuals’
abilities to adhere to treatment, and to prevent new MDR-TB infections. This finding
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supported the research objectives, particularly the one to develop the integrated communication model presented in Chapter Ten.
Unanticipated findings from the preliminary analysis of data
Reading data and generating initial codes in Step Two resulted in some findings which had not been anticipated at the onset of the study. The theme of vulnerable young women, their intimate relationships with men, and impacts of financial dependency, gendered power dynamics and intimate partner violence in patriarchal societies with strong traditionally defined gender norms were identified as contributing factors to sub-optimal adherence to treatment among the case study. There are parallels between these findings and what is known about reason for young women’s greater susceptibility to HIV infection in countries in sun-Saharan Africa. All subsequent data collection events with young women incorporated these themes and questions were added to the research guides to probe the issues further.
Vulnerable women’s agency in intimate relationships with men is reportedly diminished, which contributes to their sub-optimal adherence to MDR-TB medication.
Additionally, low socioeconomic status is correlated to truncated agency in decision- making about taking treatment. This is particularly so where women are unemployed or under-employed and reliant on intimate male partners for their livelihoods. This information emerged when participants were asked how it was possible that patients could have left-over medication at the time of visiting the hospital to collect subsequent prescriptions. A nurse explained, ‘The woman will say she left her medication at home when she went to her boyfriend’s house. Then she will default like that. They say, “my boyfriend said I must leave the tablets”. And she leaves the medication at home’ (Nurse #2, Interview, 7 March 2018).
Fear of or experiencing abuse in domestic settings is another reason why young women might fail to fully adhere to treatment. A key participant shared that:
It is also important to consider that we know that there are abusive relationships, so in families as well we have to be very careful. We need to find out from the woman, because if she is with a partner who can abuse her verbally or use violence, because of the stigma issues of having MDR-TB, we must know this. And mainly it could be that he himself is just afraid, so he takes it out on her in an abusive manner (N. Ngomane, Interview, 10 April 2018).
Lack of agency, control and fear of violence were not the only reasons offered to account for why women failed to adhere to treatment when they were away from their home. While perceptions of key participants were that intimate partner violence
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was a significant factor, when young women with MDR-TB in focus groups were asked about lack of support by intimate partners and experiences of violence to triangulate the finding, many reported being with very supportive partners and explained that being in an intimate relationship was in fact protective and did not compromise their adherence to treatment in any way. While this finding was tracked in subsequent data collection events, less emphasis was placed on its importance by participants than was done initially.
Interestingly, findings from later focus group discussions suggested that expectations of women’s submission in patriarchal societies has protective effects for younger women; especially for those in the 18 to 22 years age range for this study. Many women in this bracket reported completing treatment and having fewer challenges adhering to their regimes, when compared to women aged 23 to 34 years. Younger young women (18 to 22 years) who participated in this research typically lived with their natal families and had an older female treatment supporter, typically a mother or grandmother, who reportedly adopted an authoritarian but caring approach to supporting younger women to take treatment, as illustrated in the quotations below:
When she was going to be hospitalised, I emphasised that she is not alone in this treatment, God is with her. I told her ‘whatever they instruct you to do, do it’ (Precious, mother of MDR-TB patient, 22 years).
When I began my treatment, I went for the injection every day and I had to drink pills before eating in the morning. I remember this one time I fainted on my way to the clinic. I skipped days when it was my clinic days. Sometimes I signed my own card on behalf of the nurses to avoid going there. For two consecutive days I didn’t go, then the DOT supporter came and reported to my mother that I wasn’t going to get my injection. My mother forced me to go, so I went (Busisiwe, 20 years, FGD#2, 21 July 2018).
These findings informed the revision and refinement of research guides to incorporate questions that probed the relationships that young women have with different people around them, and how they impact their abilities to adhere to MDR-TB treatment.
This information helps to address the research question ‘Who in vulnerable young female patients’ lives should be targeted with relevant treatment education for enhanced adherence to MDR-TB medication in eThekwini Metro’, by establishing who has influence over their attitudes and treatment intentions.