TB treatment initiation and adherence in a South African community influenced more by perceptions than by knowledge of tuberculosis

Tuberculosis (TB) is a global health concern. It is a major cause of illness and death worldwide, especially in low- and middle-income countries where it is fuelled by human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS), by population increase where TB is most prevalent and by increased poverty [1].

TB is the most common infection for the estimated 5.5 million South Africans living with HIV/AIDS (in a national population of some 48 million). The co-infection rate of HIV is estimated at 73 per cent in all TB cases. The estimated incidence of TB in South Africa is 692 per 100,000 people [2], a rate the WHO classifies as a serious epidemic. Even though the DOTS program has been active since 1995, TB remains a major health problem in South Africa and especially in the Eastern Cape [3]. Cure rate of 65% remains well below the 85% rate recommended by the WHO [2]. At 41%, The Eastern Cape's cure rate lags even further behind the national average [4].

Health seeking behaviour and non-adherence to therapy has been cited as major barrier to the control of TB [5–18]. Non-adherence is a complex, dynamic phenomenon with a wide range of interacting factors impacting treatment taking behaviour [10]. It poses a significant threat to both the individual patient and public health and is associated with higher transmission rates, morbidity, and costs of TB control programs [6]. Furthermore, it leads to persistence and resurgence of TB and is regarded as a major cause of relapse and drug resistance [7].

The TB literature is written almost entirely from a biomedical perspective. Recent studies show, however, that lay perceptions may explain why people seek and may stop taking treatment [10]. Research that acknowledges social, economic and geographical context is necessary to understand the impact of traditional beliefs and perceptions of illness and wellness on adherence [11].

Such research is still scarce. From the perspective of public health promotion, (cost-) effective treatment provision, individual wellbeing, and social welfare it is important to gain insight into the views of people regarding TB, especially among high risk populations such as the Eastern Cape [19, 20]. Achieving a high level of TB awareness is crucial for the success of prevention and treatment efforts in high risk populations and represents a key challenge for public health initiatives [20]. Since the Eastern Cape is known as a province with high incidence, prevalence [21] and with one of the worst cure rates of South Africa [4], its inhabitants can be considered lay experts when it comes to TB. Therefore, we investigated perceptions among an Eastern Cape population. The aim of this study was to gain better insight into what influences health seeking behavior and adherence to TB treatment via investigating knowledge and perceptions regarding TB patients, health seeking behavior and adherence to TB treatment among an Eastern Cape community.

The Eastern Cape is a South African province characterised by high levels of poverty and unemployment. TB is endemic in the Eastern Cape [2, 21] and the cure rate of 41% lags far behind the 85% rate recommended by the WHO [4]. Data from a survey of 1020 Grahamstown East/Rhini households, conducted in November 2007, were used for this study.

Regression analyses revealed similar attitudes and perceptions for the young and the old, for men and women, and for the lower and higher educated -- suggesting that people in this population share the same attitudes and perceptions. Our findings are likely to reflect the actual situation of TB patients in this population. The more so because most respondents know people with TB in their immediate environment.

TB knowledge can be considered fairly good among this community. The perception on "respondent believes it is mainly irresponsible people who do not take their treatment who are to blame for spreading TB" did not imply stigma only. Since some level of the treatment failure is due to irresponsible people this is also an indicator of knowledge.

However, respondents mainly considered TB to be an African disease and were under the misconception that all TB patients will also develop HIV. This perceived link can be explained by the fact that TB is main cause of death among the estimated 5.5 million South Africans living with HIV/AIDS (>10% of the country's population). Indeed, the co-infection rate approaches 73% in TB patients among all age groups [2]. Future publicly released information should emphasize that having active TB disease in an individual who is also infected with HIV leads to a worsening of the HIV illness, but having TB does not lead to becoming infected with HIV. Scores on the other items were fairly good, which contradicts prior findings suggesting that people in developing countries lack TB knowledge [8, 16, 19, 20, 25–27]. The population in the current study appears to be better informed in this regard.

The results are suggestive of a high level of stigmatization: a full 95% of respondents believe people with TB tend to hide their TB status because they are afraid of what others may say. People think that irresponsible individuals who do not take their treatment are mainly to blame for spreading TB. Besides blaming those individuals, they accuse them of hiding their TB status for fear of what others might say. They also think that people who acquire TB through drinking and smoking are getting what they deserve and that TB patients are less respected within the community. While research shows that the increased TB incidence and prevalence during the last decade is mainly due to population increase where TB is most prevalent, increase of HIV and increased poverty [28] most people within this community believe it is mainly the irresponsible patients who do not take their treatment that are to blame for spreading TB. Also the finding that respondents believe people who drink and smoke "get what they deserve" indicates blame and potential stigmatization.

More than half of the respondents believe that TB patients interrupt treatment because they think they are cured. This finding is interesting and justifies the need for improved communication and mutual understanding between care providers and patients. Implementing of interventions aimed at improving communication and mutual understanding between care providers and patients into this matter by the national tuberculosis program would improve TB treatment outcomes nationally. The second most important perception of respondents as main reason for non-adherence (they are afraid people will talk bad about them when they go to the clinic) is suggestive of stigma within the community. The fact that respondents mention this in their top 2 of most important reasons for default from treatment shows that people within this community believe stigma to be a real problem for adherence to TB treatment. This is in line with prior findings indicating that stigma plays a significant role in adherence [7, 8, 29–33]. If the perceptions of the respondents represent the actual situation for TB patients in the Eastern Cape, stigma causes people to reject the diagnosis, leading to the infection of more people and potential drug resistance.

Furthermore, it is interesting that most respondents believe TB patients prefer active involvement by travelling to the hospital and clinics themselves, compared to having a family member or DOTS volunteer daily delivering the medicine at home.

The major limitation of our study is that we studied perception of the lay public only, not actual behavior. Since attitudes of the lay public play a central role in the patient's decision-making process it is important to gain insight into what actually influences an individual's decision to seek treatment and adherence to that treatment instead of looking at behavior only. However, after learning how these mechanisms work it is important to investigate whether changes in attitudes and perceptions also lead to actual behavior change. Therefore, it would be interesting to conduct a follow-up study amongst TB suspects, adherent and non-adherent TB patients to document actual behavior.

The reason why the majority of respondents were women and older people were overrepresented in comparison to general population figures could be related to the inherent limitation of the conventional Kish grid [22]. Use of this instrument often leads to a higher proportion of women and older people. Regression analyses of age, gender and education show that there are very few significant differences in knowledge, attitudes and perception among these subgroups. Therefore, the higher proportion of women and older people does not appear to have affected our study findings.

The results of this study show that while TB "lay experts" knowledge seems fairly good, their perceptions suggest that stigma may play a significant role in case finding and case holding. Findings from this study are important in improving the societal supports to TB patients. It would seem, therefore, that community education should focus on improving attitudes and perceptions, thus potentially reducing stigma. It requires a patient centered approach, which starts with interventions targeting the intrapersonal level (empowerment, self help, advocacy and support group) to empower TB patients. The next step is involvement of TB patients in the development of stigma reduction programs at other levels [18]. TB patients' experiences are helpful at organizational/institutional and community level in developing training programs and new interventions that should contribute to stigma reduction rather than unintentionally enhance stigmatization. A shift of power relation and an active role of TB patients in this process could lead to more patient centered programs, empowerment of TB patients and stigma reduction. Furthermore, studying the actual situation in TB suspects and patients is necessary to confirm our study findings.