Background
The National Tuberculosis Control Program of Ethiopia faces many challenges despite its significant achievements in case detection and treatment success. The country still ranks 7
th in terms of TB burden worldwide and needs to progress towards the Stop TB Partnership targets of halving prevalence and deaths from TB by 2015 [
1]. The key challenges against attaining these targets are delay in diagnosis and non-compliance to treatment by TB patients. These may increase the risk of the spread of infection in the community, threaten the success of treatment, increase the risk of multidrug resistance, as well as relapse, and death [
2‐
6].
Timely treatment initiation and compliance are the two central issues to the success of TB control programs [
7]. In Ethiopia, where there are increasing incidences of new infectious TB cases [
8], quantitative studies from urban and rural areas found that the mean delay between the onset of TB symptoms and initiation of treatment ranges from 13 to 20 weeks [
9,
10] which is higher than the 4 week cut-off point commonly used to define long delays [
11]. The rate of default from TB treatment ranges from 12 to 20% [
12,
13] which is also higher than the World Health Organization recommendation of less than 10% [
14].
Evidence from a variety of literature shows that there are many factors affecting timely TB treatment initiation and compliance [
15‐
26]. However, in Ethiopia, only a few studies looked into these factors and reported them quantitatively without further exploration into the issue owing particularly to the underutilization of qualitative research. The aim of this study was thus to explore reasons for TB treatment initiation and compliance from the lived experience and views of TB patients in Dabat district, Ethiopia.
Methods
A qualitative, phenomenological study was carried out at the Dabat Health and Demographic Surveillance System site (HDSSs), owned by the University of Gondar, from July to December, 2011. The site is located in a district known as Dabat, northwest Ethiopia and has an estimated population of 46,165 living in 7 rural and 3 urban "kebeles" (the smallest administrative units in Ethiopia).Information on vital events, like birth, death, and migration were collected quarterly. The district has two health centers, three health stations, and twenty-nine health posts providing health services to the community. Only the two health centers in the study area provide Directly Observed Treatment Short Course (DOTS) to TB cases [
27]. The DOTS coverage of the district by government health facilities is about 95%. TB treatment involves daily attendance for two months (the intensive phase), followed by a period of four months during which patients collect drugs weekly (the continuation phase). At the time of the study, HIV counselling and testing was routinely carried out for TB patients [
28].
Participants and data collection
A TB Surveillance Project based on active and passive case findings at the Dabat HDSSs [
10] identified 137 smear-positive TB patients aged ≥14 years between 1 October, 2010 and 30 September, 2011. The study included TB patients who were attending treatment and those who had interrupted treatment. Newly diagnosed TB patients and patients who had interrupted treatment were approached by means of invitation letters distributed by the health personnel working at DOTS clinics in the study area. A purposive sample of 26 patients, fifteen women and eleven men aged 18 to 50, participated in the study. To ensure reasonable spread, range of participants with respect to age, sex, and residence were selected. Individuals who were seriously sick and mentally disabled excluded.
A trained research assistant (RA) performed the one-to-one in-depth interviews using a semi-structured guide in venues convenient for the participants. The guide was developed in English and translated into Amharic (the local language) for all participants. Interviewees narrated their live experiences from both individual and health system level perspectives. They were interviewed in their own houses, and access was ensured through TB surveillance project field workers at the Dabat HDSS site. Interviews lasted 40 to 60 minutes and were audio-taped with the consent of participants. The RA was guided by participant responses in deciding when and how to probe the emergent themes. Interviews continued until all categories were well-defined and saturated after interviewing the twenty-six participants. The principal investigator and the research assistant selected the research participants, closely monitored the in-depth interview process, took field notes and had regular meetings with the RA.
Qualitative content analysis of the interviews was performed using the Open Code software version 3.1. The RA transcribed and translated each interview. The translated material was read several times in order to get the general sense of the content. An inductive approach was followed to allow conceptual clustering of ideas and patterns to emerge. This process included a descriptive phase of identifying meaning units and assigning codes which were then compared and reorganized into tentative categories.
Ethical considerations
The study protocol was reviewed and approved by the Institutional Review Board of the University of Gondar. Written consent was obtained prior to each interview and interviewee anonymity was guaranteed.
Discussion
This study suggests that TB patients have to overcome great challenges in seeking care early and complying with TB treatment. The majority of the TB patients reported that difficulty of geographic access to health facilities, financial burden, use of traditional healing system and delay in diagnosis by health care providers were the main reasons for not initiating TB treatment timely. Problem of geographic access to health facilities, financial burden, quality of health services provided and social support were identified as the main reasons for failing to fully comply with TB treatment.
Problems of physical access to TB diagnosis and treatment centres were the most important factors influencing early TB treatment initiation and compliance [
12,
13]. We found that many patients still experience difficulties related to traveling to health facilities for diagnosis and daily attendance for treatment. There were only two health centers in the study area providing health services including DOTS to a population of over 145,458 [
29]. The majority of the people in these settings lived in areas which required more than two hours to reach a health facility. In an effort to reduce the access gap to health care, the Ethiopian Government had started a new community-based initiative called the “Health Service Extension Program”. Under this program, two health extension agents were identified and trained in each kebele (smallest administrative unit in Ethiopia with an estimated population of 5000) to enhance case holding under the DOTS program through the decentralization of services in the country [
13,
30]. The provision of transport fee and permitting some of the poorest or the most ill patients to take medicine home for self-treatment may be a means to increase treatment adherence. A recent review of randomized control trials, comparing DOTs with self-administration of therapy, provided no evidence that self-administration of anti-TB in low-and middle-income countries reduced cure or treatment completion problems in people with TB [
31]. Several authors have advocated a shift in perspective where patients' socioeconomic environments, their well-being, and dignity are considered in future strategies. Strategies based on self-treatment can be strengthened by support and supervision by identified relatives, neighbors, or through other social structures like the ‘Idir’, which is a community-based body with social responsibility mainly for arranging funerals, or ‘TB clubs’, which are small groups of patients who live near each other [
32,
33]. Several TB control programmes that leave the choice of DOT supervisor to the patient have been shown to be successful [
34].
The financial burden on TB patients was one of the key issues influencing timely treatment initiation and compliance in our study. In Ethiopia, TB diagnosis and treatment are meant to be provided free of charge with the aim of decreasing the financial burden on patients [
35]. However, the main financial burdens, as evidenced in the present study, are the extra costs of transportation, medical examinations, the need to purchase liver protection drugs, hospitalization costs, and expenses of basic necessity. Moreover, the needed ancillary treatment is charged with significant financial burden on patients and their families. The brutal level of poverty that the participants of this study faced often meant that they were living below the breadline, unable to meet their own and their families’ basic needs for health care. Thus, improving access to DOTS including the required ancillary treatment services can significantly reduce financial burden on TB patients.
The use of an indigenous local healing system was also reported by most participants in this study. Prolonged self-treatment involving traditional healing systems are the first step in the health-seeking behavior process. In developing countries, it is estimated that about half the general public uses complementary and alternative medicine [
7,
18,
19]. In this study, we understood that such practices are common in areas where TB patients first try local healing practice before turning to DOTS services. This finding is consistent with previous studies and is linked to failure to identify TB suspects [
17].There is a need for interventions that encourage symptomatic individuals to seek modern medical care as early as possible by establishing links to alternative health care providers.
The inability of health services to suspect and diagnose TB patients at first contacts contributed to late TB treatment initiations. In this study, a few of the TB patients who visited health care facilities reported that health care providers failed to suspect and diagnose TB early enough in the course of their illness. As it was observed, the health centers in the study area were not well-equipped with TB diagnostics. This confirmed findings from previous studies that showed that health units failed to investigate chronic coughs in a certain proportion of TB suspects [
3,
6,
17]. This finding raises several programmatic and policy implications. Misdiagnosis and faulty treatment lead the patient to loss of scarce time and money in search of treatment and may increase the duration of illness and the possibility of death. For public health officials, misdiagnosis results in the underestimation of TB incidence rates and increases the duration of infectivity in the community. Interventions like the implementation of standard screening procedures and rapid diagnostics, training and close supervision of health care providers, strengthening quality control and education of patients so that they expect and request diagnostic testing for TB when appropriate, and reduced costs for diagnostic tests could improve the likelihood of TB diagnosis at health facilities.
The quality of health care participants received was an important factor that influenced treatment compliance. The relationship between health care practitioners and participants is indicative of a good “therapeutic alliance”, a process in which the practitioner effectively understands the patient’s problem and formulates a management plan that is conducive to compliance. A good therapeutic alliance is underpinned by trust, empathy, and positive regard [
7,
21]. Participants seemed to suggest that good communication and involvement in the treatment process equipped TB patients with the capacity to play active roles in managing their own health. This finding is consistent with that of other studies [
22,
23]. An improvement in these aspects of TB treatment is crucial in encouraging patients to continue with treatment for the full duration of the regimen.
In this study, family support is identified as the most important factor for influencing treatment compliance. It is possible that family support can alleviate patients’ economic and social problems. Family members can also observe patient adherence to medications, provide encouragement, and remind them of their medical appointments [
12,
24,
25]. A previous study from Ethiopia found that most patients interrupted medication in their third or fourth month of treatment [
13] which may indicate fading family support during the later phases of treatment [
26].
The validity of the findings of this study was strengthened by the triangulation of the source, that is collecting data from patients who were on treatment and who had interrupted treatment. Additionally, the validity of the study should have further been strengthened by triangulation of researchers, that is by involving multiple researchers to analyze the data, develop and test the coding scheme. It is also expected to have ensured a wider representation of experiences and views on the subject matter making it relevant to other rural settings in Ethiopia and elsewhere in Sub-Saharan African countries.
Competing interests
The authors declared that they have no competing interests.
Authors’ contributions
TT initiated the research, wrote the research proposal, conducted the research, did data analysis and wrote the manuscript. MD, YB, YK and MA involved in the write up of the proposal, data analysis, and write up of the manuscript. All authors read and approved the final manuscript.