“I can’t believe that I have robeng” understanding health-seeking behaviour related to tuberculosis in Cambodia

Tuberculosis (TB) is a leading cause of morbidity and mortality worldwide, killing nearly two million adults annually, the majority of whom live in developing countries. Research has shown that multiple factors— individuals, misunderstandings of TB, economic hardship of patients, the fragmentation of health services, gender, and stigma all influence transmission, detection and treatment of TB. After a decade of implementation of the international TB control strategy centred on the Directly Observed Treatment Short-course (DOTS), TB incidence and prevalence in Cambodia remains among the highest in the world, with a considerable number of cases remaining undetected. However, little is known about the factors hindering the success of the TB control programs efforts. This thesis is based on ethnographic research conducted in Kampong Speu province, Cambodia, aiming to describe TB patients’ pathways to the DOTS programs, and factors determining the pathways and treatment adherence. Methods used included in-depth interviews with TB patients, family members, health providers, community health volunteers and Kru Khmer (traditional healers); focus group discussions with community members; a community survey; participation in meetings and workshops aimed at health workers; and observation of daily activities at participating health facilities. The two most important challenges for TB control in rural Cambodia were delayed presentation for TB diagnosis and non-adherence to TB treatment programs. Both contributed to persistent TB infection within the community, and were influenced by the interaction and combination of individual, institutional (related to the health system), and socio-economic factors. TB patients and community members had limited understanding of TB symptoms, causation, and treatment; therefore they did not respond appropriately, and present with early symptoms for timely diagnosis and treatment. Lay explanations of these early symptoms were mostly influenced by folk information shared within community networks. Despite this, community members chose providers of western medicine as their first choice, and only used Kru Khmer when western medicine did not resolve their symptoms. Access to public health service presented significant barriers for obtaining early TB diagnosis, and was critically undermined by the interaction between the five dimensions: accommodation, availability, accessibility, affordability and acceptability. Low government salaries and shortages of health staff, limited supplies, and dual job practices of health staff all significantly impacted on public service delivery. This under-performance increased people’s reliance on the private health sector which, due to the lack of collaboration between the two health sectors, contributed to delayed TB diagnosis and increased health care costs. Ineffective monitoring of the private health providers further exacerbated diagnostic delays. TB patients experienced prolonged pathways, consulted multiple providers, and spent substantial time and money before reaching DOTS. Large differences in delay were influenced by patients’ ability to afford private treatment, TB diagnostics errors, and denial of the possibility of TB. Presentation to DOTS was resultant from social disruption, intervention by significant others and/or self-suspicion about TB. Patients usually enrolled in a directly observed treatment (DOT) promptly after TB diagnosis, however, although this required TB treatment to be taken under DOT by health worker or a community member, all patients self-administered TB medicines without observation. Thus treatment non-adherence was commonly reported, and discontinuation of treatment occurred mainly among vulnerable groups (elderly and poor) for two reasons: feeling better and side-effects. This study raised concerns related to the treatment of re-infection TB cases, as many such people return to treatment but are not correctly registered and treated. Socio-economic factors played an important role in TB treatment-seeking and shaped available family support, ability to pay and stigma associated with TB. Stigma played a considerable role in delaying TB diagnosis, and affected the psychological well-being of patients. It was derived from fears of contagion and the dangers presented by TB, the perceived association between HIV and TB, misunderstanding about TB causation, and attitudes of health staff. Rejection of TB patients was associated with perceptions that TB patients lacked a sense of moral responsibility to protect others from contracting TB; their extremely low social status was also significant. Although TB diagnosis and treatment was within reach of most of the population, obtaining timely diagnosis and compliance with TB treatment remained difficult, particularly for those who were most in need. Although challenges were caused by individual and socio-cultural factors, institutional factors related to the public health facilities created significant barriers for people in accessing the services. Improving TB patient outcomes requires effort and commitment to not only address individual and socio-cultural factors, but to redress shortcomings in health supply and staffing through effective public health system strengthening