Health Policy and Planning Advance Access originally published online on May 25, 2006
Health Policy and Planning 2006 21(4):265-274; doi:10.1093/heapol/czl014
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Health service providers' perceptions of barriers to tuberculosis care in Russia
1Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK 2Centre for Health Management, Tanaka Business School, Imperial College London, London, UK 3Department of Microbiology and Infection, King's College, London, UK and 4Sociological Centre, Samara University, Samara, Russia
Correspondence: Dr Richard Coker, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT UK. Tel: +44 (0) 207 927 2926; Fax: +44 (0) 207 612 7812; E-mail: Richard.Coker{at}lshtm.ac.uk
 |
Abstract |
|---|
 Top Abstract IntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
The Russian Federation has witnessed a marked rise in rates of tuberculosis (TB) over the past decade. Public health TB control institutions remain broadly modelled along pre-1990 lines despite substantial programmes of investment and advocacy in implementing the World Health Organization's ‘Directly Observed Treatment—short course’ (DOTS) strategy. In 2002, we undertook a qualitative study to explore health care providers’ perceptions of existing barriers to access to TB services in Samara Oblast in Russia. Six focus group discussions were conducted with physicians and nurses from facilities in urban and rural areas. Data were analyzed using a framework approach for applied policy research. Barriers to access to care were identified in interconnected areas: barriers associated with the health care system, care process barriers, barriers related to wider contextual issues, and barriers associated with patients’ personal characteristics and behaviour. In the health care system, insufficient funding was identified as an underlying problem resulting in a decrease in screening coverage, low salaries, staff shortages, irregularities in drug supplies and outdated infrastructure. Suboptimal collaboration with general health services and social services limits opportunities for care and social support to patients. Worsening socioeconomic conditions were seen both as a cause of TB and a major obstacle to access to care. Behavioural characteristics were identified as an important barrier to effective care and treatment, and health staff favoured compulsory treatment for ‘noncompliant’ patients and involvement of the police in defaulter tracing. TB was profoundly associated with stigma and this resulted in delays in accessing care and barriers to ensuring treatment success.
Key Words: tuberculosis, health services accessibility, health care providers, focus groups, Russia
|
Introduction |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
During the last decade Russia has experienced profound and rapid political, economic and social changes. There has been large-scale impoverishment and decreasing social cohesion, rising unemployment rates, and increased homelessness, migration, drug and alcohol use (UNDP 1998
). This has been paralleled by a marked rise of tuberculosis (TB) notification rates, from 34 to 95 per 100 000 population between 1990 and 2000 (WHO 2005). There are indications that in a situation of diminished resources and growing need, access to effective TB care might be problematic (Garrett 2000; Reichman and Tanne 2002; Coker et al. 2003; Atun et al. 2005a; Coker et al. 2005).
Samara Oblast, a region with population of approximately 3 million, is located in south-central Russia, 1000 km from Moscow. It is the setting of a collaborative project aiming to strengthen TB control, funded by the UK Department for International Development (Coker et al. 2003). Through research we have sought to develop knowledge on systemic, organizational, socioeconomic and broader cultural factors influencing delivery of TB care, to ensure that reform initiatives acknowledge the lessons that are drawn and are informed by the local context and thus sustainable (Coker et al. 2003; Atun et al. 2004; Coker et al. 2004a). The issues of access to care and adherence to treatment are particularly salient to effective control of TB and this study seeks to provide baseline data (WHO 2003).
Access to care depends on a complex interaction of multiple factors. These include issues such as responsiveness of service provision to the needs of users (availability, accessibility, affordability, appropriateness and acceptability), and patients’ health-seeking behaviour, which is influenced by socio-cultural, behavioural, financial and organizational factors (Penchansky and Thomas 1981; Gulliford et al. 2002). Notions of access to care also draw on issues of equity in provision of services to those in need. Poor and disabled populations, rural communities, immigrant and ethnic minorities are each likely to experience barriers in entering and utilizing health services (Aday and Andersen 1981; Vladek 1981).
There is a substantial body of qualitative research on barriers to diagnosis and treatment for TB in different settings, particularly in low-income countries (Sumartojo 1993; Ogden 2000). However, barriers vary with context and, we believe, are important to understand more fully in the transitional post-Soviet health system with large numbers of trained staff, a sizeable infrastructure, and subsidized care, but with high rates of drug-resistant TB, as in the case of Samara (Drobniewski et al. 2002; Ruddy et al. 2005). This study is likely to be relevant to other lower middle-income countries, where significant inputs in their health systems have failed to translate into effective TB control. The Russian-language research literature reveals a paucity of qualitative analyses which explore barriers to access to care for TB in Russia and the former Soviet Union. Among the reasons for this are the traditionally universal coverage of health care, a predominance of biomedical studies and a lack of political interest in user satisfaction (Coker et al. 2004b).
This paper reports findings from a qualitative study seeking to explore barriers to effective health care provision of TB services in Samara from the point of view of providers, and to identify possible approaches for structural and functional improvements to services that are responsive to patients’ needs.
Whilst most studies on access to care for TB to date have drawn on the perspective of users and analysis of systems, it may also be important to explore the views of providers as powerful stakeholders in the reform process. We did this, recognizing that the Russian health care system is highly medicalized, politically stratified, ordered and bureaucratic, and that health care providers, with a high degree of professional autonomy (Coker et al. 2004b), could feasibly be the most realistic catalyst for change in the short to medium term.
|
Methods |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
The principal research questions asked were: from a provider's perspective, what are the barriers to care for people suffering from TB, and how do these barriers interact? This was addressed using focus group discussion (FGD) with health staff in 2002 because it provides an informal forum for discussion of relevant issues, while capitalizing on interaction between the participants, encouraging open conversation and analysis of common experiences (Khan et al. 1991
; Kitzinger 2000). The method is particularly valuable for rapidly gaining baseline information.
Six FGDs were conducted: three groups with TB physicians and three groups with TB nurses from Samara Oblast. On average each group consisted of eight participants, and in total 47 health care workers were included. The sample was stratified by professional role (physician or nurse), facility level (outpatient clinics, hospitals and polyclinics) and by geographical area (large cities, small towns and rural areas) in order to explore and compare views on access to care of different professional groups working in different settings. These were ‘natural groups’ where most participants knew each other, which provided the advantage that the group dynamic and opinion formulation resembled everyday reality (Flick 2002). Composition of groups, including separate groups for physicians and nurses, ensured that there were participants from a variety of backgrounds, whilst at the same time avoiding the dominant views of any particular professional discipline. FGDs took place in a non-medical setting, and were moderated by an experienced social scientist from Samara State University. Strict procedures to ensure confidentiality were followed. FGDs were video-recorded and transcribed, and a second researcher took notes recording group dynamics.
Data analysis was conducted jointly by Russian and British researchers and involved deductively analysing data on pre-defined policy-relevant themes (Ritchie and Spencer 1994). The themes were derived from a detailed institutional analysis conducted previously in the region (Coker et al. 2003), with some reference to themes emerging from the global debate (WHO 2005). This was complemented by a more inductive ‘grounded theory’ approach (Strauss and Corbin 1997) seeking to elicit respondent-generated meanings and aspects of access to care in Russia.
Access to care is operationalized as the time lag between first symptoms and initial contact with the health system, and from diagnosis to completion of treatment. Data were coded and thematically analysed by Russian and bilingual English/Russian speaking researchers. Categories were organized into hierarchies of broader concepts.
Ethical approval for the study was obtained in Russia and the UK, and verbal consent was obtained from all participants.
|
Results |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
A number of barriers were identified, from initial contact with a health practitioner, through diagnosis of TB, to all stages of subsequent treatment and follow-up.
Health systems barriers
Resource shortages
Insufficient financing, especially chronic shortfall of funding for recurrent expenditure for TB services, was a recurring theme of discussions: identified as the source of most problems in the health system, leading to restricted access to care, inadequate diagnostic capacity, lack of drugs, poor maintenance and working conditions in the health facilities, poor dietary provision for patients in hospitals, lack of transportation for conducting home visits and tracing of patients, low salaries and poor motivation of staff. The under-resourced health care system was seen as unable to respond to the growing burden of disease.
A sizeable proportion of the population in Russia is excluded from the compulsory health insurance system (Balabanova et al. 2003). Those without insurance often need to use informal channels to access care. Health care providers are involved in issuing temporary registration documents and insurance policies and liaising with other institutions on an ad hoc basis. There are no formal procedures to deal with such cases, although some uninsured patients may be treated without charge at the TB dispensary, the region's main TB hospital, if capacity allows. Where private enterprises do not provide health insurance for their employees, treatment expenses should be formally covered by the ‘territorial insurance fund’, but the procedure for making a claim is complicated and time consuming.
‘Who can admit them, if their treatment isn't paid for? The drugs are expensive, the insurance company does not pay for their treatment. There are many such patients. This is a big problem both for them and for us.’(nurses, Samara city)
Intersectoral cooperation
Despite the recognition that TB is a complex disease requiring cooperation between the TB service and the rest of the health care system, social services and police, most providers reported working in isolation, with insufficient support. It was widely agreed that legislation defining clearly the responsibilities of each institution was needed but is absent. Moreover, it was perceived that because there are no functioning instruments to enforce treatment, decisions in this regard were inappropriately left for medical professionals alone to make.
Treatment and follow-up of TB patients are organized through a vertical system of health care facilities, with little involvement or collaboration with non-specialized facilities. However, primary care facilities (polyclinics) are the entry point into the health care system, providing initial diagnosis or referring patients to fluorography when they consult for other health problems. A source of particular concern amongst participants was the lack of knowledge shown by general practitioners, who, it was perceived, often fail to detect the symptoms of TB and to refer patients for investigation.
TB was perceived by the majority of respondents as a ‘social disease’ requiring multi-sector collaboration. Poverty, poor housing and living conditions, malnutrition, drug and alcohol use, imprisonment and unemployment were perceived as underlying causes of TB as well as obstructing access to TB care.
‘TB has always been considered a socio-medical problem. The causes are the social problems.’
‘... our people became very poor ... they eat poorly, they live poorly ...’
‘The housing is poor here ... and almost all patients are unemployed.’Inadequate intra- and inter-sectoral collaboration, insufficient responsiveness of services to need, and the lack of flexible approaches were criticized. Effective intersectoral working relations are hindered by perceptions of risk. Social services have little involvement with supporting TB patients and facilitating the access of marginalized groups to TB services because of the risk of contracting TB.(physicians, Samara city)
‘Social workers are afraid to catch TB. As soon as they learn that a patient has TB, they stop caring for them.’(nurses, Samara city)
Human resources
Care for TB patients in Russia is provided exclusively by health professionals specializing in TB: phthisiatrists (TB physicians) and phthisiatric nurses. Most FGD participants reported shortages of staff, work overload and competing priorities, low salaries and low motivation. Professionals also identified burdens that they felt went largely unrecognized such as working in a high-risk environment, demands for additional work hours and increased job responsibility (for example, acting both as district physicians as well as managing TB patients). Broadly, human resource planning in relation to TB was widely seen as suboptimal.
Care processes
Case detection
Regular mass radiological screening (fluorography) of the adult population organized through work or education establishments remains the main method of TB case detection. Participants in the FGD repeatedly noted that the reduction in the screening coverage in recent years due to budgetary constraints is a major drawback of the current system for TB control. For providers, mass fluorography remains the preferred method for diagnosis.
However, an increased number of the unemployed, migrants, homeless, ex-prisoners, pensioners and other vulnerable groups have eluded screening programmes because they are frequently employed informally or do not have a registered address. Participants noted that these marginalized individuals represent the majority of TB patients.
‘In our district there is a resolution to conduct screening once a year, but despite this out of 12 000 individuals about 1500 people every year fail to undergo fluorography. Pensioners often refuse; the homeless and people released from prisons are also last in the queue.’(physicians, rural areas)
In rural areas, radiology equipment is available only in central district hospitals based in cities. The remoteness of some villages from cities, high transportation costs and the shortage of mobile radiology equipment were identified as barriers to effective diagnosis.
‘Villagers don't like going for fluorography because they have to pay 25–30 Roubles in order to reach [the health centre].’(physicians, small town)
The growth of private enterprises has also obstructed the success of screening programmes. Although legislation demands that all enterprises organize screening for their employees prior to employment and at yearly intervals thereafter, many private companies do not comply with these regulations and there are no mechanisms to enforce these.
‘In the past, fluorography was mandated once a year; all people were obliged to undergo investigation through their employers. Now this arrangement is lost. There are few state enterprises, and the owners of the private enterprises employ people without requiring fluorography.’(physicians, rural areas)
The reasons behind the weakening of the mass screening system were only partly explained by under-funding and hard-to-reach populations. The population's ‘lack of responsibility for their own health’ coupled with disinvestment in state health promotion has led, it is believed, to a marked increase in disease rates. Moreover, some suggested that in some cases resistance to screening amounted to a form of social protest and questioning of public institutions’ authority.
The health care workers were unanimous in their views that ‘the former system must be re-established’. Amongst the measures that should be implemented, that supported most strongly was that the law in regard to screening at the workplace should be enforced such that all employees undergo screening at the start of employment and at regular intervals thereafter.
Tracing and monitoring patients
One of the most contentious issues deliberated upon was the tracing of TB patients on treatment, who should be responsible for this, and how the failure to trace patients hampers their access to care. The task of contacting patients who have not initiated (or have interrupted) treatment is largely the responsibility of health staff and was frequently perceived as a considerable burden, time consuming and often fruitless. The main problems included a lack of means for staff transportation, staff shortages to manage outpatients and to trace those who defaulted from treatment, financial disincentives for patients to present for care, and perceptions of danger from aggressive and often ‘asocial’ patients towards the visiting staff.
Some participants questioned whether tracing patients was an appropriate use of health professionals’ time, although others, particularly nurses, posited that it should be their responsibility given the public health consequences if this work was not conducted.
Continuity of care
Interruptions in continuity of care following the initial diagnosis were seen in several FGDs as obstructing access to effective care. Health professionals indicated significant difficulties in reaching particular groups, especially the unemployed, those without permanent addresses or marginalized individuals. Most participants favoured involvement of the police in tracing those defaulting from treatment (as was the practice in the past) and deplored both the systems’ inability to impose treatment on non-compliant patients and the lack of cooperation from police authorities. Participants were also concerned about the limited support provided by social services to trace individuals with disease or at risk.
‘Since 2001, there is a law on mandatory treatment for patients with open forms of TB. The police should assist us in bringing the patients to treatment. The patients do not come to us for years!’(nurses, Samara city)
In principle, physicians can request legal sanctions (drawing on the Russian Federal Law, 2001) to be imposed upon individuals who decline treatment, but most participants felt that this conflicted with their role as health professionals caring for the individual. In practice, staff employ innovative or ad hoc methods to persuade individuals to undergo treatment, including counselling, negotiation, explanations of the consequences of non-treatment and seeking the support of primary care physicians. Although there were varying views on when treatment should be mandated, a substantial majority of the participants argued that mandatory treatment should be an available option and that this, when implemented, should draw effectively upon the services offered by the police and social services.
‘Firstly, there should be compulsory treatment. We used to have experience in treating compulsorily both TB and alcoholism ... we should return to it ...’(physicians, Samara city)
It was a commonly held view that it is the individual patient's responsibility to adhere to treatment. All participants agreed that the patient should bear legal responsibility for non-adherence to treatment and be prosecuted for failure to comply.
‘There used to be a law for compulsory treatment of venereal diseases—if a person didn't comply with treatment, he was prosecuted under the criminal law; this would solve lots of problems. They could send him to a closed zone, treat him there ...’(physicians, Samara city)
Treatment interruptions or delays were thought to occur frequently as patients moved between institutional settings. In part interruptions resulted because symptoms had been relieved and patients did not understand the need to continue treatment.
‘It often happens ... the patient is discharged from the hospital, comes to us and says: "I’m well now, they told me. I've been cured." In fact, his symptoms have been relieved. But he thinks he has been cured completely. Some patients are simply not ready to follow the whole course of treatment, without interrupting it, especially during the ambulatory stage. While he is in the hospital he feels like a patient, he is given injections, made infusions, the treatment is active. And then he feels well and thinks it's a complete recovery. And if we make the terms of treatment shorter [to comply with World Health Organization DOTS strategy], we'll make the situation even worse.’(physicians, rural areas)
Under the current Russian system, follow-up continues for several years after initial treatment is completed, during which time the patient is registered at the TB dispensary and visits regularly for checkups and anti-relapse preventive chemotherapy twice a year (Coker et al. 2003). Health professionals view prolonged follow-up as an advantage. Indeed, a few suggested that in many cases follow-up should be ‘life-long’.
‘The length of follow-up is of great importance: the early detection, prevention, anti-relapse treatment, dispensary group registration, we do all that.’
Access to drugs
Officially, the health system in Samara guarantees all anti-TB drugs free of charge to patients funded through the mandatory insurance system. However, several problems in the drug supply that were identified by the health staff could present a barrier to patients receiving appropriate treatment. According to FGD participants, first-line anti-TB drugs are available somewhat erratically at the TB facilities. The drug regimens prescribed, therefore, depend on the availability of drugs through dispensaries.
‘... all depends on the range of drugs we have available at the moment; we choose the type of treatment depending entirely on the available medicines.’
‘When we used to procure drugs ourselves, it was much better—we used to know what is necessary and in what quantity. And now we get large quantities of some drug when we don't need ... the situation is like that because they [the health administration] buy the drugs wholesale, it is cheaper.’(physicians, smaller towns)
In some facilities, because drugs are unavailable, patients are advised to purchase drugs themselves. Those patients who cannot afford to buy drugs try to avoid treatment and delay visiting health care services. Other patients buy the cheapest drug available intermittently, potentially leading to treatment failure.
‘It becomes a vicious circle: one can't buy drugs, so he stays on a minimum number of drugs that he can afford. But on them only, the disease can be suppressed temporarily, but not cured. And TB turns from acute into chronic, and then with any exacerbation it blows up.’(physicians, small towns)
There is a lack of second-line drugs for patients with drug-resistant forms of TB. In such cases, physicians perceive little choice other than to exchange one or two drugs in the main regimen or to leave the chronic patients without treatment.
‘We have no substitute drugs in cases of resistance to the main drugs, or one or two drugs at best ... I request the necessary medication but I get only refusals as there is no money ... the chronic patients—we do not treat them at all. We need drugs for that and they are very expensive.’(physicians, small towns)
Care environment
Perceptions of care quality may act as deterrents to service use. In Russia, treatment for TB is usually delivered in hospitals where patients spend lengthy periods of time (Coker 2001; Coker et al. 2003; Atun et al. 2005a, b,c; Floyd et al. 2006). Conditions in hospitals (general hygiene on the wards, privacy, dietary provision) influence patients’ perceptions and satisfaction with care. According to a significant proportion of providers, poor conditions in the hospitals are often a reason for the patients to refuse hospitalization and interrupt treatment.
‘A normal person would never want to be treated here, regardless of the high qualification of the physicians and the good treatment they provide. The patients don't endure even one term in those conditions.’(physicians, Samara city)
Participants suggested that patients consider the likely composition of other inpatients when determining which facilities to use. Specifically, patients may be unwilling to reside with alcoholics, ex-prisoners, drug users and the homeless. Reasons offered include the stigma of association and fear of contracting untreatable forms of TB.
‘... don't want to be treated in [the hospital] he is referred to. There are many former prisoners there, drug addicts, alcoholics, thieves. And the patients don't want to be treated there. They’re riff-raff there ...’
‘There it's dirty, overcrowded, the wards are inter-communicating, everything is dilapidated. These are no conditions for treating patients!’
‘They have 10–12 people in a room!’Poor dietary provision in hospitals is an important deterrent from hospitalization. Previously, generous nutritional support in hospitals was supported by the Ministry of Health through obligatory nutritional requirements. Budgetary constraints, however, have meant that nutritional norms cannot be met. Moreover, general hospital funds do not have protected budget lines for meals or drugs, meaning that these line items may suffer when other priorities exist (Coker et al. 2005(physicians, smaller towns)
).‘Previously, nutritional provision was guaranteed, there were norms and one had to stick to them! Now there are no norms, or the accounting department do not pay attention to them. At the TB dispensary almost nothing is given for lunch and absolutely nothing for supper ... There are no budget lines for food, for refurbishment, equipment. If there is refurbishment going on, there is no money for anything else. Patients then are robbed ...’(physicians, small town)
Despite the multiple problems associated with hospitalization, home-based care is not a popular strategy among health professionals. This is mainly due to a long-term tradition favouring inpatient TB management, geographical and other barriers to care that lead to interrupted treatment, but also a perception that patients should be under daily observation and cannot be trusted to adhere to treatment in their home.
Contextual factors
Socioeconomic barriers
A view that featured prominently in all discussions with health professionals was that care for different socioeconomic groups should be targeted through different strategies. In recent years there has been a marked shift in patients’ socioeconomic status. Whilst in the past most patients came from low socioeconomic status groups, participants suggested that TB is now not confined to this group but crosses socioeconomic strata; patients are increasingly better off, better educated and well-integrated into society or, in the terminology used by many participants, ‘normal’. Disease incidence was also reported to have increased among the elderly and the young, among those suffering from other chronic diseases, and in women.
Participants identified fear of unemployment as a major obstacle to patients seeking care and a reason for delays in diagnosis.
‘Many private firms do not give people paid sick leave. It leads to a situation when people seek medical help only in the most urgent cases, and when TB is already in an advanced form. People are afraid of losing their jobs, and that's why they don't seek help.’Despite treatment for TB being formally free, absence of benefits to cover housing, transport and food is especially problematic and obstructive to treatment, particularly when people potentially lose their jobs through illness.(physicians, Samara city)
Criminal justice system and civilian sector linkages
Health staff identified a number of barriers to the delivery of effective treatment to prisoners. Firstly, it was perceived that prison health services frequently fail to provide appropriate treatment, which leads to development of drug resistance and sometimes treatment failure and death. Compounding this, participants thought that prisoners are frequently unwilling to comply with treatment.
Health system gaps in care between prison services and the civilian sector were highlighted in relation to released prisoners. Poor coordination between the two sectors and insufficient exchange of information often impedes timely follow up of released patients. Moreover, lists of released prisoners frequently provide inaccurate address details regarding where the patients are expected to reside after they return to the community.
Poverty means that most former prisoners struggle to travel to TB facilities when receiving ambulatory treatment. Moreover, former prisoners often decline hospitalization because of the personal restrictions incurred and institutions’ resemblance to prison settings.
‘... people come from the prison, we search for them according to the discharge list, and they are not at the reported address, often they have never lived there ... Most of them don't work; employers don't take on those who have been to prison. It is very difficult to treat them in the community ...’(physicians, Samara city)
Geography
Problems of physical access to care in geographically remote areas were clearly recognized by the participants. The remoteness of villages from town where specialized TB dispensaries are located, and lack of means to cover the transportation costs, makes appropriate health care inaccessible to many rural inhabitants.
Cost of transport for patients is a problem not only in remote rural areas, but also in the larger cities because public transport is unaffordable for many. Patients are often referred for outpatient treatment to facilities, but transport may be inadequate, too costly or low on patients’ lists of priorities.
‘He needs eight Roubles to travel to the dispensary. Where can he get it from? And if he finds it, he can buy a bottle with it ... We cannot attract them by any means ...’(physicians, Samara city)
Stigma
Discussion with the health care providers also demonstrated some public attitudes which are likely to hamper access to care. Stigma appeared to be a significant barrier to access to care. Most participating health staff were aware of a sense of stigma attached to TB and how it potentially influenced access to care. TB was seen as an infectious, dangerous and threatening condition. These features were associated with widespread negative perceptions of TB as a ‘social disease’ confined to marginalized population groups who are often seen to be engaged in anti-social behaviour (‘social evils’). Participants suggested that the association of the disease with homelessness, crime and imprisonment, alcohol abuse and other forms of socially unacceptable behaviour irrationally magnifies the perceived threat to public health and leads to further marginalization and social exclusion of those marked by the disease. This is further enhanced by a cultural tradition of intolerance to people who do not work and ‘do not contribute to the society’, viewed as a self-determined way of life, a way of life that was ‘criminalized’ in the past. People from less deprived sections of society were reported to react with denial and disbelief when diagnosed with TB. These individuals in particular, it was noted, struggle to accept their diagnosis and frequently seek second opinions from other medical specialists, leading to delays in the initiation of treatment.
‘The well-off people resist acknowledging [the diagnosis]. For example, I know an ordinary family and their son, a teenager, was diagnosed with a severe form of TB. They couldn't believe that. Such people ... resort to alternative medicine and when at last they come back to us, they have a more advanced form of TB. They cannot accept the fact. "We are a normal family, where did we get ... this social disease from? ... We have no TB in the family!"’(physicians, rural areas)
Negative attitudes and lack of support from family, neighbours and the wider community were reported to be a significant barrier to ensuring continuity of treatment. Participants agreed that the adverse effects of stigmatization on the individual's life can be compounded if treatment is delivered by health care workers to patients’ homes or to their place of work, because of the potential for disclosure of information on health status to friends, family and neighbours.
‘Society influences them. Even ‘normal’ people cannot endure it. Our population is ignorant. For example, people learn that their neighbour has TB. ... they wouldn't say "hello" to him ... families break down ... men start to drink. We explain to their wives that nobody is inured to the disease, and that they, on the contrary, should help. If people behave towards the person in the same way as before, then he would be motivated to get treated.’Furthermore, attitudes to TB make it difficult to organize testing and treatment in the workplace and in the community.(physicians, small town)
‘The health posts at the industrial enterprises are of no help. I can't even tell them that their worker has TB. If I tell, then he will be an outcast at his workplace.’(physicians, small town)
Participants suggested that attitudes were not always related to patients’ infectious status. Patients who are not infectious and are physically able to work may still be subjected to discrimination and excluded from work by employers. Indeed, many individuals are effectively excluded from the formal labour market. Within small communities, this influences how physicians deal with issues of diagnosis, notification and confidentiality.
‘Let's say a TB patient appeared in the rayon [area] and everyone asks him "Why do you come here?" The head of the collective farm asks him the same. He does have TB but he can work. The patient is not able to exercise his rights, although he could actually go to the court!’
‘And I can't say that someone has TB—one must be very careful in the village.’(physicians, small town)
Perceptions of stigma also affect patients’ choice of hospital. Indeed, many try to hide the fact that they have TB from their relatives and acquaintances and seek treatment in facilities remote from their home, which may result in intermittent treatment.
‘Some patients themselves request hospitalization here [outside Samara city]. For instance they don't want to get treatment in Samara [city], because their acquaintances, friends and colleagues there may learn about it, and here nobody knows them.’(nurses, smaller towns)
Patients' personal characteristics and behaviour
Health care providers were united in their views that TB affects mostly socially disadvantaged people, those coming from the poorest sectors of society. The disease is associated in people's minds with certain types of behaviour, notably crime, drug abuse, alcoholism and other forms of ‘antisocial’ behaviour. The ‘typical’ TB patient was described as ‘a drug addict, alcoholic, and antisocial or asocial person’ who is also ‘unwilling to be treated’ or ‘resists treatment by all means’. Former prisoners and homeless people were referred to as ‘the main sources of disease’ and the ‘real breeders’ of TB (physicians, rural areas).
Patients were broadly divided into two groups in regard to treatment adherence: patients from relatively affluent social strata, who were perceived as being disciplined, ‘wanting to get cured’ and adherent to treatment; and socially disadvantaged patients who were ‘unwilling to be treated’ and ‘undisciplined’. However, participants also often referred to ‘typical’ TB patients who are difficult to persuade to adhere to treatment.
‘Willingness’ to access and adhere to treatment (also seen in terms of ‘determination’) was seen as a critical factor in successful treatment outcomes. According to the health staff, patients from ‘decent’ families are more disciplined, and more likely to adhere to prescribed treatment regimens. These personal characteristics and the social context from which patients come also appear to influence the stages at which they present and their speed of recovery.
‘... the well-off patients—they never have advanced forms [of disease].’
‘They follow all the doctors’ advice precisely, because they want to get healthy again. They let all members of their families to be tested, and trace their own contacts as far as TB is concerned.’(physicians, rural areas)
Several physicians and nurses suggested that patients’ behaviour and their perceptions were the principal barriers to accessing appropriate care.
‘There are no barriers from our side.’(physicians, small town)
Patients' knowledge
A perceived lack of awareness about TB amongst putative patients leads to symptoms being ‘ignored’ and delays in seeking health care. Moreover, ‘denial’ is frequent, where because of the stigma attached to TB, many individuals struggle to accept the possibility that they may be affected by a disease they associate with ‘anti-social’ and ‘unworthy’ sectors of society. Insufficient knowledge is common amongst all socioeconomic groups and, it was believed, is often associated with lack of interest in their own health and a paucity of public health information being conveyed by the public health system.
The non-specific nature of symptoms associated with TB was identified as a major obstacle to timely diagnosis. Symptoms were frequently ignored, especially in those who consumed large amounts of alcohol or suffered from chronic malnourishment.
‘The clinical presentation of TB itself, he is not ‘ill’—the man has no pain, until it all develops into inflammation or bleeding.’(physicians, small town)
|
Discussion |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
This study has elicited the perceptions of health care professionals on the multiple barriers to diagnosis and treatment that permeate current TB control systems in Russia. The key perceived barriers fall into broad groups that are interlinked: barriers associated with the health care system, care process barriers, barriers related to wider contextual issues, and barriers associated with patients’ personal characteristics and behaviour.
Notably, health care system barriers were the most significant. Access to care is hampered by resource shortfalls, poor accessibility of diagnostic (especially screening) facilities and poor quality of the care environment. Health services provision is not specifically targeted to the needs of the vulnerable and marginalized individuals in that the most vulnerable appear to face what are sometimes insurmountable health care system barriers compounded by the limited resources (personal resilience or financial) they are able to draw upon. In the post-Soviet transition period, the social support previously provided by the state for people suffering from TB—including rehabilitation care in sanatoria, affordable accommodation and payment of long-term disability benefits—has not been sustained due to shrinking public budgets, and the intersectoral linkages with the other institutions, such as social services and the criminal justice system, have been disrupted. TB hospitals compensate for these shortcomings by acting as social institutions that provide non-clinical social support (Atun et al. 2005d).
In addition to the inadequacy of financing, it was perceived that the way the health system is financed had also created barriers to care, reflecting earlier research findings (Atun et al. 2005c). Moreover, poor linkages between the verticalized elements of the TB system and between the TB system and social sector were frequently highlighted as reasons for fractured continuity of care (Atun et al. 2005a).
Notably, HIV was rarely raised in FGDs. This may in part be a consequence of the vertical separation of health care structures for TB and HIV, but may also be a result of a lack of awareness and concern because of the immaturity of the HIV epidemic (Drobniewski et al. 2004; Coker et al. 2006) and wider socio-political contextual factors (Atun et al. 2005e).
Clearly, to address these health system fractures, reform of the health system and intersectoral approaches are needed. Effectively addressing these barriers to care by embedding incentives to ensure access to diagnosis and sustainable treatment, as well as establishing intersectoral approaches to managing TB to ensure continuity, are profound challenges that demand fundamental and multifaceted reforms of health and social care systems (Atun et al. 2005a). For such reforms to succeed, the views and attitudes of providers must be taken into account, as well as a parallel process of reform of professional roles and functions (Longest et al. 2004). Further, the reform process is not a linear and rational one and will be influenced, amongst others, by the wider social and political environment within which the system is embedded (Atkinson 2002), contextual factors (Fitzgerald et al. 2002) and endorsement by ‘peer’ or ‘expert’ opinion leaders (Locock et al. 2001). It is not clear that a favourable environment exists in Russia for such fundamental reforms.
Suboptimal care processes further hinder TB control. Historically, the Russian Federation developed its own system of case-finding, treatment and reporting practices for TB, where X-Ray screening is the norm and new cases are hospitalized for treatment according to care guidelines specified in regulations (Coker et al. 2003). Evidence from other countries, however, suggests that outpatient care for TB patients is feasible with lower costs than inpatient care (Floyd et al. 1997, 2003; Nganda et al. 2003; Okello et al. 2003). Modifying the existing system with the shortcomings identified would require a fundamental redesign of the TB control system, with innovative care models that respond to human and social need developed and carefully executed so as not to further disrupt care. Despite the shortcomings identified, our study shows that most of the ‘frontline’ stakeholders, including clinicians and patients involved in control efforts, favour the current care provision system. Achieving strategic change would therefore be very challenging, and require ‘ownership’ by stakeholders as well as changes in deeply held cultural attitudes (Ogden et al. 2003).
Public attitudes and stigma appear to be important deterrents from seeking timely care, the consequences of which are not only damaging to the personal well-being of TB patients, but also likely undermine effective TB control and promote disease transmission. Changing public attitudes towards people with TB could be addressed in the long term through information campaigns about TB and its treatment, using existing communication channels to convey messages; and creating user-friendly entry points for diagnosis and treatment.
Despite the barriers that patients face, many providers still believe that accessing treatment depends on the patients’ good will and fundamentally remains the responsibility of patients, a familiar refrain (Farmer 2001). Thus, it is a popular view of health care professionals that treatment should be mandatory for ‘undisciplined’ patients who ‘do not want to get treatment’. However, many health care professionals were aware that this proposition is ethically problematic because it potentially reinforces stigma, marginalizes further already vulnerable individuals, and may hinder the effective and timely provision of care.
Recognizing and defining the scope and nature of the existing barriers to access to care is important if access to care is to improve. Professionals’ attitudes need to be understood and to inform the change process. Models of good practice exist and most professionals are clearly committed to both their work and the patients whose care they are responsible for. Frequently forces beyond their control mean that their efforts result in limited public health improvements. If the energy, skills and knowledge of health care professionals are to be drawn upon effectively in efforts to control TB, then reform processes – including shifts to ambulatory care, restructuring of TB detection, treatment and care facilities and provision of social support – need to be informed by professionals’ knowledge, experience and insights.
In the short term, the health systems, social sector and the general views held by health professionals mean that large improvements in the efficiency of TB control and health systems changes in Russia would be difficult to introduce. However, some barriers, including regulations governing clinical care and reporting systems (Ministry of Health 2003, 2004), have recently been addressed in support of international standards. In the medium-term, it should be feasible to develop a change programme to positively influence stakeholder attitudes, revise existing approaches to care and modify the health system to improve financing, resource allocation and intersectoral linkages, but only if a multifaceted and systemic change programme involving all the key stakeholders is adopted.
|
Biographies |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
Boika Dimitrova is a Research Fellow in the European Centre on Health of Societies in Transition, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, UK.
Dina Balabanova, MSc, PhD, is a Lecturer in the Health Policy Unit, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine (LSHTM), UK.
Rifat A Atun, MBBS, MBA, DIC, FRCGP, MFPH, is Reader in International Health Management and Director, Centre for Health Management, Tanaka Business School, Imperial College London, UK.
Francis Drobniewski, MSc, PhD, MRCPath, is Professor of Tuberculosis in the Department of Infectious Diseases, Guy's King's and St Thomas’ Medical School, East Dulwich Grove, London, UK.
Vera Levicheva is a Senior Teacher in the Sociological Centre, Samara University, Samara, Russia.
Richard J Coker, MD, MSc, FRCP, is Senior Lecturer in Public Health in the Health Services Research Unit, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, UK.
|
Acknowledgements |
|---|
The authors wish to thank colleagues from Samara State University for their assistance in data collection and analysis, the physicians and nurses who shared their knowledge, experience and insights, and the staff of Samara Oblast Health Department for facilitating this research. This work was funded by the UK Department for International Development, London, UK.
|
References |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionBiographiesReferences |
|---|
Aday L and Andersen R. 1981. Equity of access to medical care: a conceptual and empirical overview. Medical Care 19:4–27.[CrossRef][Web of Science][Medline]
Atkinson S. 2002. Political cultures, health systems and health policy. Social Science and Medicine 55:113–24.
Atun R, Lennox-Chhugani N, Drobniewski F, et al. 2004. A framework and toolkit for capturing the communicable disease programmes within health systems: tuberculosis control as an illustrative example. European Journal of Public Health 14:267–73.
Atun R, Samyshkin Y, Drobniewski F, et al. 2005a. Social factors influencing hospital utilisation by tuberculosis patients in the Russian Federation: analysis of routinely collected data. International Journal of Tuberculosis and Lung Disease 9:1140–6.[Web of Science][Medline]
Atun R, Baeza J, Drobniewski F, et al. 2005b. Implementing WHO DOTS strategy in the Russian Federation: stakeholder attitudes. Health Policy 74:122–32.[CrossRef][Web of Science][Medline]
Atun RA, Samyshkin YA, Drobniewski F, et al. 2005c. Barriers to sustainable tuberculosis control in the Russian Federation health system. Bulletin of the World Health Organization 9:217–23.
Atun R, Samyshkin Y, Drobniewski F, et al. 2005d. Seasonal variation and hospital utilization for tuberculosis in Russia: hospitals as social care institutions. European Journal of Public Health 15:350–4.
Atun R, McKee M, Drobniewski F, et al. 2005e. Analysis of how the health system context shapes responses to the control of human immunodeficiency virus: case studies from the Russian Federation. Bulletin of the World Health Organization 83:730–8.[Web of Science][Medline]
Balabanova DC, Falkingham J, McKee M. 2003. Winners and losers: the expansion of insurance coverage in Russia in the 1990s. American Journal of Public Health 93:2124–30.
Coker R. 2001. Control of tuberculosis in Russia. The Lancet 358:434–5.
Coker R, Dimitrova B, Drobniewski F, et al. 2003. Tuberculosis control in Samara Oblast, Russia: institutional and regulatory environment. International Journal of Tuberculosis and Lung Disease 7:920–32.[Web of Science][Medline]
Coker R, Atun R, McKee M. 2004a. Untangling Gordian knots: improving tuberculosis control through the development of ‘programme theories’. International Journal of Health Planning and Management 19:217–26.[Medline]
Coker RJ, Atun R, McKee M. 2004b. Health care system frailties and public health control of communicable diseases on the European Union's new eastern border. The Lancet 363:1389–92.[CrossRef][Medline]
Coker R, Dimitrova B, Drobniewski F, et al. 2005. Health system frailties in tuberculosis service provision in Russia: an analysis through the lens of formal nutritional support. Public Health 119:837–43.[CrossRef][Web of Science][Medline]
Coker R, McKee M, Atun R, et al. 2006. Risk factors for pulmonary tuberculosis in Russia: case control study. British Medical Journal 332:85–7.
Drobniewski F, Balabanova Y, Ruddy M, et al. 2002. Rifampin and multiple drug resistant tuberculosis in the Russian civilian and prison sectors – dominance of the Beijing strain family. Emerging Infectious Diseases 8:1320–6.[Web of Science][Medline]
Drobniewski F, Atun R, Fedorin I, et al. 2004. The ‘bear trap': the colliding epidemics of tuberculosis and HIV in Russia. International Journal of STD and AIDS 15:641–6.
Farmer P. 2001. Infections and inequalities: the modern plagues Berkeley, CA University of California Press.
Fitzgerald L, Ferlie E, Wood M, et al. 2002. Interlocking interactions, the diffusion of innovations in health care. Human Relations 55:1429–49.
Flick U. 2002. An introduction to qualitative research London Sage Publications.
Floyd K, Wilkinson D, Gilks C. 1997. Comparison of cost effectiveness of directly observed treatment (DOT) and conventionally delivered treatment for tuberculosis: experience from rural South Africa. British Medical Journal 315:1407–11.
Floyd K, Skeva J, Nyirenda T, et al. 2003. Cost and cost-effectiveness of increased community and primary care facility involvement in TB care in Lilongwe District, Malawi. International Journal of Tuberculosis and Lung Disease 7:S29–S37.[Web of Science][Medline]
Floyd K, Hutubessy R, Samyshkin Y, et al. 2006. Health systems efficiency in the Russian Federation: the case of tuberculosis control. Bulletin of the World Health Organization 84:43–51.[CrossRef][Web of Science][Medline]
Garrett L. 2000. Betrayal of trust: the collapse of global public health New York Hyperion.
Gulliford M, Figueroa-Munoz J, Morgan J, et al. 2002. What does ‘access to health care’ mean? Journal of Health Services Research and Policy 7:186–8.
Khan ME, Anker M, Patel BC, et al. 1991. The use of focus groups in social and behavioural research: some methodological issues. World Health Statistics Quarterly 44:145–9.[Medline]
Kitzinger J. 2000. Focus groups with users and providers of health care London BMJ Books.
Locock L, Dopson S, Chambers D, et al. 2001. Understanding the role of opinion leaders in improving clinical effectiveness. Social Science and Medicine 53:745–57.
Longest BBJ, Rakich JS, Darr K. 2004. Managing health services organizations and systems Baltimore, MD Brookes.
Ministry of Health. 2003. Prikaz of the Ministry of Health of the Russian Federation # 109 from 21 March 2003. On improvement of TB control activities in the Russian Federation Moscow Ministry of Health.
Ministry of Health. 2004. Prikaz of the Ministry of Health of the Russian Federation # 50 from 13 February 2004. On implementing of TB recording/reporting system Moscow Ministry of Health.
Nganda B, Wang’ombe J, Floyd K, et al. 2003. Cost and cost-effectiveness of increased community and primary care facility involvement in TB care in Machakos District, Kenya. International Journal of Tuberculosis and Lung Disease 7:S14–S20.[Web of Science][Medline]
Ogden J. 2000. Improving tuberculosis control: social science inputs. Transactions of the Royal Society of Tropical Medicine and Hygiene 94:135–40.[Medline]
Ogden J, Walt G, Lush L. 2003. The politics of ‘branding’ in policy transfer: the case of DOTS for tuberculosis control. Social Science and Medicine 57:179–88.
Okello D, Floyd K, Adatu F, et al. 2003. Cost and cost-effectiveness of community-based care in rural Uganda. International Journal of Tuberculosis and Lung Disease 7:S72–S79.[Web of Science][Medline]
Penchansky R and Thomas J. 1981. The concept of access: definition and relationship to consumer satisfaction. Medical Care 19:127–40.[Web of Science][Medline]
Reichman L and Tanne J. 2002. Timebomb: the global epidemic of multi-drug resistant tuberculosis New York McGraw-Hill.
Ritchie J and Spencer L. 1994. Qualitative data analysis for applied policy research. In Burgess R (Ed.). Analyzing qualitative data London Routledge.
Ruddy M, Balabanova Y, Graham C, et al. 2005. Rates of drug resistance and risk factor analysis in civilian and prison patients with tuebrculosis in Samara Region, Russia. Thorax 60:130–5.
Strauss A and Corbin J. 1997. Grounded theory in practice Thousand Oaks, CA Sage Publications.
Sumartojo E. 1993. When tuberculosis treatment fails: a social behavioural account of patient adherence. American Review of Respiratory Disease 147:1311–20.[Web of Science][Medline]
UNDP. 1998. Poverty in transition? Geneva United Nations Development Program.
Vladek B. 1981. Equity, access and the costs of health services. Medical Care 19:69–80.[Medline]
WHO. 2003. Adherence to long-term therapies: evidence for action Geneva World Health Organization.
WHO. 2005. Global tuberculosis control: surveillance, planning, financing Geneva World Health Organization.
CiteULike 
Connotea 
Del.icio.us What's this?
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||