PLoS One. 2016 Mar 28;11(3):e0152283. doi: 10.1371/journal.pone.0152283.
“My Favourite Day Is Sunday”: Community Perceptions of (Drug-Resistant) Tuberculosis and Ambulatory Tuberculosis Care in Kara Suu District, Osh Province, Kyrgyzstan.
Burtscher D1, Van den Bergh R2, Toktosunov U3, Angmo N4, Samieva N4, Rocillo Arechaga EP5.
- 1Médecins Sans Frontières, Vienna Evaluation Unit, Vienna, Austria.
- 2Médecins Sans Frontières, Brussels, Belgium.
- 3Ministry of Health, Bishkek, Kyrgyzstan.
- 4Médecins Sans Frontières, Bishkek, Kyrgyzstan.
- 5Médecins Sans Frontières, Osh, Kyrgyzstan.
Kyrgyzstan is one of the 27 high multidrug-resistant tuberculosis (MDR-TB) burden countries listed by the WHO. In 2012, Médecins Sans Frontières (MSF) started a drug-resistant tuberculosis (DR-TB) project in Kara Suu District. A qualitative study was undertaken to understand the perception of TB and DR-TB in order to improve the effectiveness and acceptance of the MSF intervention and to support advocacy strategies for an ambulatory model of care.
This paper reports findings from 63 interviews with patients, caregivers, health care providers and members of communities. Data was analysed using a qualitative content analysis. Validation was ensured by triangulation and a ‘thick’ description of the research context, and by presenting deviant cases.
Findings show that the general population interprets TB as the ‘lungs having a cold’ or as a ‘family disease’ rather than as an infectious illness. From their perspective, individuals facing poor living conditions are more likely to get TB than wealthier people. Vulnerable groups such as drug and alcohol users, homeless persons, ethnic minorities and young women face barriers in accessing health care. As also reported in other publications, TB is highly stigmatised and possible side effects of the long treatment course are seen as unbearable; therefore, people only turn to public health care quite late. Most patients prefer ambulatory treatment because of the much needed emotional support from their social environment, which positively impacts treatment concordance. Health care providers favour inpatient treatment only for a better monitoring of side effects. Health staff increasingly acknowledges the central role they play in supporting DR-TB patients, and the importance of assuming a more empathic attitude.
Health promotion activities should aim at improving knowledge on TB and DR-TB, reducing stigma, and fostering the inclusion of vulnerable populations. Health seeking delays and adherence problems will be countered by further implementation of shortened treatment regimens. An ambulatory model of care is proposed when convenient for the patient; hospitalisation is favoured only when seen as more appropriate for the respective individual.
The research on perception of drug-resistant tuberculosis and ambulatory tuberculosis care in Kara Suu district showed that delays in seeking care were mainly due to the interpretation of TB as a ‘cold disease’ or the ‘lungs having a cold’. This notion leads the patients and their caregivers to deal with TB and DR-TB as a condition that they can treat themselves. They either treat it like a common cold or they search for treatment in the folk sector [1, 2]. This novel finding was one of the main characteristics the health promotion team found useful to address in their messages given to the communities. Along with these popular TB concepts health promotion activities continuously highlight that TB and DR-TB are curable when patients are diagnosed, concur with the treatment and complete the treatment. What further informed the project team was that young women were considered more vulnerable than others, as they lose their ‘significance’ as daughters-in-law and therefor are considered inappropriate to be married [3, 4]; that people were facing difficulties to access care because they were part of the marginalized groups like alcohol and drug users or were facing constraints to complete treatment; and that some people had to make a choice between treatment and work. Another feature leading to delay in seeking care was the stigma attached to TB [5, 6]. The project team engaged in fighting stigma by using the media. TB patients, who were cured and now act as expert clients talking about their experience with the disease and the treatment, enriched the project team. Some of these “experts” even have their own blogs to support others .
The most important support for patients is the doctor/nurse-patient relationship. Health personnel from different health care sectors recognized the important role they play in regards to the patient’s treatment – in medical and emotional terms. Since DR-TB requests a long treatment course, patients and health care providers engage in a longer-term relationship with the patient. On that note they take on a crucial role in the patient’s treatment period. Patients need to be able to confide in and trust the personnel who are administering the treatment. Consequently, this impacts on patients adhering to treatment or not. In that sense the programme goes along with a strong PSEC (patient support, education and counselling) component, which is of utmost importance for the patients. It has a positive impact on the patient’s and family’s confidence in the TB treatment The patient-centred approach aims at creating the most acceptable and comfortable environment for the patients, their families and caregivers as well as the health care providers .
Access to care depends on the interaction of multiple factors comprising two main aspects:
- the responsiveness of service provision to the needs of patients (ambulatory model of care) in terms of availability, accessibility, affordability, appropriateness and acceptability and
- patients’ health-seeking behaviour, which is influenced by socio-cultural, behavioural, financial, practical and empirical factors.
Poor and neglected people (alcohol and drug users, Luli etc.), migrants and young women are most vulnerable in experiencing barriers to access health services. To address these barriers a programme addressing the needs of the population in a culturally sensitive way, with a respectful and empathic attitude, is crucial. The success of such a decentralised model of care depends on the population accepting it as well as on health staff performing in a stigma-free and supportive way.
Photo description: Patient coming for an x-ray in radiology cabinet of Osh TB cabinet.
Photo copyright: Vincent Tremeau
Photo taken: 2013
1. Stickley A, et al., Prevalence and factors associated with the use of alternative (folk) medicine practitioners in 8 countries of the former Soviet Union. BMC Complementary and Alternative Medicine, 2013. 13(83): p. 9.
2. Woith, W.M. and J.L. Larson, Delay in seeking treatment and adherence to tuberculosis medications in Russia: A survey of patients from two clinics. International Journal of Nursing Studies, 2008. 45(8): p. 1163-1174.
3. Agboatwalla, M., et al., Gender perspectives on knowledge and practices regarding tuberculosis in urban and rural areas in Pakistan. East Mediterr Health J, 2003. 9(4): p. 732 – 740.
4. Wang Jianing, et al., Gender difference in knowledge of tuberculosis and associated health-care seeking behaviors: a cross-sectional study in a rural area of China. BMC Public Health, 2008. 8(1): p. 354.
5. Courtwright, A. and A.N. Turner, Tuberculosis and Stigmatization: Pathways and Interventions. Public Health Rep, 2010. 125(Suppl 4): p. 34-42.
6. Daftary, A., HIV and tuberculosis: the construction and management of double stigma. Soc Sci Med, 2012. 74(10): p. 1512-9.
7. Horter, S., et al., “I Can Also Serve as an Inspiration”: A Qualitative Study of the TB&Me Blogging Experience and Its Role in MDR-TB Treatment. Plos One, 2014.
8. Horter, S., “Home is where the patient is”: a qualitative analysis of a patient-centred model of care for multi-drug resistant tuberculosis. BMC Health Services Research, 2014. 14(81).