Health service providers' perceptions of barriers to tuberculosis care in Russia

Health service providers’ perceptions of barriers to

tuberculosis care in Russia

B DIMITROVA,1 D BALABANOVA,1 R ATUN,2 F DROBNIEWSKI,3 V LEVICHEVA4 AND R COKER1

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, 3Departmentof Microbiology and Infection, King’s College, London, UK and 4Sociological Centre, Samara University,Samara, Russia

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 substantialprogrammes of investment and advocacy in implementing the World Health Organization’s ‘DirectlyObserved Treatment—short course’ (DOTS) strategy. In 2002, we undertook a qualitative study toexplore health care providers’ perceptions of existing barriers to access to TB services in SamaraOblast in Russia. Six focus group discussions were conducted with physicians and nurses fromfacilities in urban and rural areas. Data were analyzed using a framework approach for applied policyresearch. Barriers to access to care were identified in interconnected areas: barriers associated with thehealth care system, care process barriers, barriers related to wider contextual issues, and barriersassociated with patients’ personal characteristics and behaviour. In the health care system, insufficientfunding was identified as an underlying problem resulting in a decrease in screening coverage, lowsalaries, staff shortages, irregularities in drug supplies and outdated infrastructure. Suboptimalcollaboration with general health services and social services limits opportunities for care and socialsupport to patients. Worsening socioeconomic conditions were seen both as a cause of TB and a majorobstacle to access to care. Behavioural characteristics were identified as an important barrier toeffective 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 stigmaand 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

During the last decade Russia has experienced profoundand rapid political, economic and social changes. Therehas been large-scale impoverishment and decreasing socialcohesion, rising unemployment rates, and increasedhomelessness, migration, drug and alcohol use (UNDP1998). This has been paralleled by a marked rise oftuberculosis (TB) notification rates, from 34 to 95 per100 000 population between 1990 and 2000 (WHO 2005).There are indications that in a situation of diminishedresources and growing need, access to effective TBcare might be problematic (Garrett 2000; Reichmanand Tanne 2002; Coker et al. 2003; Atun et al. 2005a;Coker et al. 2005).

Samara Oblast, a region with population of approxi-mately 3 million, is located in south-central Russia,1000 km from Moscow. It is the setting of a collaborativeproject aiming to strengthen TB control, funded bythe UK Department for International Development(Coker et al. 2003). Through research we have soughtto develop knowledge on systemic, organizational, socio-economic and broader cultural factors influencing delivery

of TB care, to ensure that reform initiatives acknowledgethe lessons that are drawn and are informed by the localcontext and thus sustainable (Coker et al. 2003; Atun et al.2004; Coker et al. 2004a). The issues of access to care andadherence to treatment are particularly salient to effectivecontrol of TB and this study seeks to provide baseline data(WHO 2003).

Access to care depends on a complex interaction ofmultiple factors. These include issues such as responsive-ness of service provision to the needs of users (availability,accessibility, affordability, appropriateness and accept-ability), and patients’ health-seeking behaviour, which isinfluenced by socio-cultural, behavioural, financial andorganizational factors (Penchansky and Thomas 1981;Gulliford et al. 2002). Notions of access to care also drawon issues of equity in provision of services to those inneed. Poor and disabled populations, rural communities,immigrant and ethnic minorities are each likely toexperience barriers in entering and utilizing health services(Aday and Andersen 1981; Vladek 1981).

There is a substantial body of qualitative research onbarriers to diagnosis and treatment for TB in different

� The Author 2006. Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine. All rights reserved.

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settings, particularly in low-income countries (Sumartojo1993; Ogden 2000). However, barriers vary with contextand, we believe, are important to understand more fullyin the transitional post-Soviet health system with largenumbers of trained staff, a sizeable infrastructure, andsubsidized care, but with high rates of drug-resistant TB,as in the case of Samara (Drobniewski et al. 2002; Ruddyet al. 2005). This study is likely to be relevant to otherlower middle-income countries, where significant inputs intheir health systems have failed to translate into effectiveTB control. The Russian-language research literaturereveals a paucity of qualitative analyses which explorebarriers to access to care for TB in Russia and the formerSoviet Union. Among the reasons for this are thetraditionally universal coverage of health care, a pre-dominance of biomedical studies and a lack of politicalinterest in user satisfaction (Coker et al. 2004b).

This paper reports findings from a qualitative studyseeking to explore barriers to effective health careprovision of TB services in Samara from the point ofview of providers, and to identify possible approaches forstructural and functional improvements to services thatare responsive to patients’ needs.

Whilst most studies on access to care for TB to date havedrawn on the perspective of users and analysis of systems,it may also be important to explore the views of providersas powerful stakeholders in the reform process. We didthis, recognizing that the Russian health care system ishighly medicalized, politically stratified, ordered andbureaucratic, and that health care providers, with a highdegree of professional autonomy (Coker et al. 2004b),could feasibly be the most realistic catalyst for change inthe short to medium term.

Methods

The principal research questions asked were: from aprovider’s perspective, what are the barriers to care forpeople suffering from TB, and how do these barriersinteract? This was addressed using focus group discussion(FGD) with health staff in 2002 because it provides aninformal forum for discussion of relevant issues, whilecapitalizing on interaction between the participants,encouraging open conversation and analysis of commonexperiences (Khan et al. 1991; Kitzinger 2000). Themethod is particularly valuable for rapidly gaining base-line information.

Six FGDs were conducted: three groups with TBphysicians and three groups with TB nurses fromSamara Oblast. On average each group consisted ofeight participants, and in total 47 health care workerswere included. The sample was stratified by professionalrole (physician or nurse), facility level (outpatient clinics,hospitals and polyclinics) and by geographical area(large cities, small towns and rural areas) in order toexplore and compare views on access to care of differentprofessional groups working in different settings.

These were ‘natural groups’ where most participantsknew each other, which provided the advantage that thegroup dynamic and opinion formulation resembled every-day reality (Flick 2002). Composition of groups, includingseparate groups for physicians and nurses, ensured thatthere were participants from a variety of backgrounds,whilst at the same time avoiding the dominant views ofany particular professional discipline. FGDs took placein a non-medical setting, and were moderated by anexperienced social scientist from Samara State University.Strict procedures to ensure confidentiality were followed.FGDs were video-recorded and transcribed, and a secondresearcher took notes recording group dynamics.

Data analysis was conducted jointly by Russian andBritish researchers and involved deductively analysingdata on pre-defined policy-relevant themes (Ritchie andSpencer 1994). The themes were derived from a detailedinstitutional analysis conducted previously in the region(Coker et al. 2003), with some reference to themesemerging from the global debate (WHO 2005). This wascomplemented by a more inductive ‘grounded theory’approach (Strauss and Corbin 1997) seeking to elicitrespondent-generated meanings and aspects of access tocare in Russia.

Access to care is operationalized as the time lag betweenfirst symptoms and initial contact with the health system,and from diagnosis to completion of treatment. Data werecoded and thematically analysed by Russian and bilingualEnglish/Russian speaking researchers. Categories wereorganized into hierarchies of broader concepts.

Ethical approval for the study was obtained in Russiaand the UK, and verbal consent was obtained from allparticipants.

Results

A number of barriers were identified, from initial contactwith a health practitioner, through diagnosis of TB, to allstages of subsequent treatment and follow-up.

Health systems barriers

Resource shortages

Insufficient financing, especially chronic shortfall offunding for recurrent expenditure for TB services, was arecurring theme of discussions: identified as the source ofmost problems in the health system, leading to restrictedaccess to care, inadequate diagnostic capacity, lack ofdrugs, poor maintenance and working conditions in thehealth facilities, poor dietary provision for patients inhospitals, lack of transportation for conducting homevisits and tracing of patients, low salaries and poormotivation of staff. The under-resourced health caresystem was seen as unable to respond to the growingburden of disease.

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A sizeable proportion of the population in Russia isexcluded from the compulsory health insurance system(Balabanova et al. 2003). Those without insurance oftenneed to use informal channels to access care. Health careproviders are involved in issuing temporary registrationdocuments and insurance policies and liaising with otherinstitutions on an ad hoc basis. There are no formalprocedures to deal with such cases, although someuninsured patients may be treated without charge at theTB dispensary, the region’s main TB hospital, if capacityallows. Where private enterprises do not provide healthinsurance for their employees, treatment expenses shouldbe formally covered by the ‘territorial insurance fund’, butthe procedure for making a claim is complicated and timeconsuming.

‘Who can admit them, if their treatment isn’t paid for?The drugs are expensive, the insurance company does notpay 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 diseaserequiring cooperation between the TB service and the restof the health care system, social services and police, mostproviders reported working in isolation, with insufficientsupport. It was widely agreed that legislation definingclearly the responsibilities of each institution was neededbut is absent. Moreover, it was perceived that becausethere are no functioning instruments to enforce treatment,decisions in this regard were inappropriately left formedical professionals alone to make.

Treatment and follow-up of TB patients are organizedthrough a vertical system of health care facilities, withlittle involvement or collaboration with non-specializedfacilities. However, primary care facilities (polyclinics) arethe entry point into the health care system, providinginitial diagnosis or referring patients to fluorographywhen they consult for other health problems. A source ofparticular concern amongst participants was the lack ofknowledge shown by general practitioners, who, it wasperceived, often fail to detect the symptoms of TB and torefer 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, malnutri-tion, drug and alcohol use, imprisonment and unemploy-ment were perceived as underlying causes of TB as well asobstructing 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, theylive poorly . . .’

‘The housing is poor here . . . and almost all patients areunemployed.’

(physicians, Samara city)

Inadequate intra- and inter-sectoral collaboration, insuffi-cient responsiveness of services to need, and the lack offlexible approaches were criticized. Effective intersectoralworking relations are hindered by perceptions of risk.Social services have little involvement with supporting TBpatients and facilitating the access of marginalized groupsto TB services because of the risk of contracting TB.

‘Social workers are afraid to catch TB. As soon as theylearn that a patient has TB, they stop caring for them.’


Human resources

Care for TB patients in Russia is provided exclusivelyby health professionals specializing in TB: phthisiatrists(TB physicians) and phthisiatric nurses. Most FGDparticipants reported shortages of staff, work overloadand competing priorities, low salaries and low motivation.Professionals also identified burdens that they felt wentlargely unrecognized such as working in a high-riskenvironment, demands for additional work hours andincreased job responsibility (for example, acting both asdistrict physicians as well as managing TB patients).Broadly, human resource planning in relation to TB waswidely seen as suboptimal.

Care processes

Case detection

Regular mass radiological screening (fluorography) of theadult population organized through work or educationestablishments remains the main method of TB casedetection. Participants in the FGD repeatedly noted thatthe reduction in the screening coverage in recent yearsdue to budgetary constraints is a major drawback of thecurrent system for TB control. For providers, massfluorography remains the preferred method for diagnosis.

However, an increased number of the unemployed,migrants, homeless, ex-prisoners, pensioners and othervulnerable groups have eluded screening programmesbecause they are frequently employed informally or do nothave a registered address. Participants noted that thesemarginalized individuals represent the majority of TBpatients.

‘In our district there is a resolution to conduct screeningonce a year, but despite this out of 12 000 individualsabout 1500 people every year fail to undergo fluorog-raphy. Pensioners often refuse; the homeless and peoplereleased from prisons are also last in the queue.’

(physicians, rural areas)

In rural areas, radiology equipment is available only incentral district hospitals based in cities. The remoteness of

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some villages from cities, high transportation costs andthe shortage of mobile radiology equipment were identi-fied as barriers to effective diagnosis.

‘Villagers don’t like going for fluorography because theyhave to pay 25–30 Roubles in order to reach [the healthcentre].’

(physicians, small town)

The growth of private enterprises has also obstructed thesuccess of screening programmes. Although legislationdemands that all enterprises organize screening for theiremployees prior to employment and at yearly intervalsthereafter, many private companies do not comply withthese regulations and there are no mechanisms to enforcethese.

‘In the past, fluorography was mandated once a year; allpeople were obliged to undergo investigation throughtheir employers. Now this arrangement is lost. There arefew state enterprises, and the owners of the privateenterprises employ people without requiringfluorography.’


The reasons behind the weakening of the mass screeningsystem were only partly explained by under-funding andhard-to-reach populations. The population’s ‘lack ofresponsibility for their own health’ coupled with disin-vestment in state health promotion has led, it is believed,to a marked increase in disease rates. Moreover, somesuggested that in some cases resistance to screeningamounted to a form of social protest and questioning ofpublic institutions’ authority.

The health care workers were unanimous in their viewsthat ‘the former system must be re-established’. Amongstthe measures that should be implemented, that supportedmost strongly was that the law in regard to screening atthe workplace should be enforced such that all employeesundergo screening at the start of employment and atregular intervals thereafter.

Tracing and monitoring patients

One of the most contentious issues deliberated upon wasthe tracing of TB patients on treatment, who should beresponsible for this, and how the failure to trace patientshampers their access to care. The task of contactingpatients who have not initiated (or have interrupted)treatment is largely the responsibility of health staff andwas frequently perceived as a considerable burden, timeconsuming and often fruitless. The main problemsincluded a lack of means for staff transportation, staffshortages to manage outpatients and to trace those whodefaulted from treatment, financial disincentives forpatients to present for care, and perceptions of dangerfrom aggressive and often ‘asocial’ patients towards thevisiting staff.

Some participants questioned whether tracing patientswas an appropriate use of health professionals’ time,although others, particularly nurses, posited that it shouldbe their responsibility given the public health conse-quences if this work was not conducted.

Continuity of care

Interruptions in continuity of care following the initialdiagnosis were seen in several FGDs as obstructing accessto effective care. Health professionals indicated significantdifficulties in reaching particular groups, especially theunemployed, those without permanent addresses ormarginalized individuals. Most participants favouredinvolvement of the police in tracing those defaultingfrom treatment (as was the practice in the past) anddeplored both the systems’ inability to impose treatmenton non-compliant patients and the lack of cooperationfrom police authorities. Participants were also concernedabout the limited support provided by social services totrace individuals with disease or at risk.

‘Since 2001, there is a law on mandatory treatment forpatients with open forms of TB. The police should assistus in bringing the patients to treatment. The patients donot come to us for years!’


In principle, physicians can request legal sanctions(drawing on the Russian Federal Law, 2001) to beimposed upon individuals who decline treatment, butmost participants felt that this conflicted with their role ashealth professionals caring for the individual. In practice,staff employ innovative or ad hoc methods to persuadeindividuals to undergo treatment, including counselling,negotiation, explanations of the consequences of non-treatment and seeking the support of primary carephysicians. Although there were varying views on whentreatment should be mandated, a substantial majority ofthe participants argued that mandatory treatment shouldbe an available option and that this, when implemented,should draw effectively upon the services offered by thepolice and social services.

‘Firstly, there should be compulsory treatment. We usedto have experience in treating compulsorily both TB andalcoholism . . .we should return to it . . .’


It was a commonly held view that it is the individualpatient’s responsibility to adhere to treatment. Allparticipants agreed that the patient should bear legalresponsibility for non-adherence to treatment and beprosecuted for failure to comply.

‘There used to be a law for compulsory treatment ofvenereal diseases—if a person didn’t comply withtreatment, he was prosecuted under the criminal law;this would solve lots of problems. They could send him toa closed zone, treat him there . . .’




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Treatment interruptions or delays were thought to occurfrequently as patients moved between institutional set-tings. In part interruptions resulted because symptomshad been relieved and patients did not understand theneed to continue treatment.

‘It often happens . . . the patient is discharged from thehospital, comes to us and says: ‘‘I’m well now, they toldme. I’ve been cured.’’ In fact, his symptoms have beenrelieved. But he thinks he has been cured completely.Some patients are simply not ready to follow the wholecourse of treatment, without interrupting it, especiallyduring the ambulatory stage. While he is in thehospital he feels like a patient, he is given injections,made infusions, the treatment is active. And thenhe feels well and thinks it’s a complete recovery.And if we make the terms of treatment shorter[to comply with World Health OrganizationDOTS strategy], we’ll make the situation even worse.’


Under the current Russian system, follow-up continuesfor several years after initial treatment is completed,during which time the patient is registered at the TBdispensary and visits regularly for checkups and anti-relapse preventive chemotherapy twice a year (Coker et al.2003). Health professionals view prolonged follow-up asan advantage. Indeed, a few suggested that in many casesfollow-up should be ‘life-long’.

‘The length of follow-up is of great importance: the earlydetection, prevention, anti-relapse treatment, dispensarygroup 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 themandatory insurance system. However, several problemsin the drug supply that were identified by the health staffcould present a barrier to patients receiving appropriatetreatment. According to FGD participants, first-line anti-TB drugs are available somewhat erratically at the TBfacilities. The drug regimens prescribed, therefore, dependon the availability of drugs through dispensaries.

‘. . . all depends on the range of drugs we have availableat the moment; we choose the type of treatmentdepending entirely on the available medicines.’

‘When we used to procure drugs ourselves, it was muchbetter—we used to know what is necessary and in whatquantity. And now we get large quantities of some drugwhen we don’t need . . . the situation is like that becausethey [the health administration] buy the drugs wholesale,it is cheaper.’

(physicians, smaller towns)

In some facilities, because drugs are unavailable, patientsare advised to purchase drugs themselves. Those patientswho cannot afford to buy drugs try to avoid treatment

and delay visiting health care services. Other patients buythe cheapest drug available intermittently, potentiallyleading to treatment failure.

‘It becomes a vicious circle: one can’t buy drugs, so hestays on a minimum number of drugs that he can afford.But on them only, the disease can be suppressedtemporarily, but not cured. And TB turns from acuteinto 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 perceivelittle choice other than to exchange one or two drugs inthe main regimen or to leave the chronic patients withouttreatment.

‘We have no substitute drugs in cases of resistance to themain drugs, or one or two drugs at best . . . I request thenecessary medication but I get only refusals as there is nomoney . . . the chronic patients—we do not treat them atall. We need drugs for that and they are very expensive.’

(physicians, small towns)

Care environment

Perceptions of care quality may act as deterrents to serviceuse. In Russia, treatment for TB is usually delivered inhospitals 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 (generalhygiene on the wards, privacy, dietary provision) influencepatients’ perceptions and satisfaction with care.According to a significant proportion of providers, poorconditions in the hospitals are often a reason for thepatients to refuse hospitalization and interrupt treatment.

‘A normal person would never want to be treated here,regardless of the high qualification of the physicians andthe good treatment they provide. The patients don’tendure even one term in those conditions.’


Participants suggested that patients consider the likelycomposition of other inpatients when determining whichfacilities to use. Specifically, patients may be unwilling toreside with alcoholics, ex-prisoners, drug users and thehomeless. Reasons offered include the stigma of associa-tion and fear of contracting untreatable forms of TB.

‘. . . don’t want to be treated in [the hospital] he isreferred to. There are many former prisoners there, drugaddicts, alcoholics, thieves. And the patients don’t wantto be treated there. They’re riff-raff there . . .’

‘There it’s dirty, overcrowded, the wards are inter-communicating, everything is dilapidated. These are noconditions for treating patients!’

‘They have 10–12 people in a room!’(physicians, smaller towns)



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Poor dietary provision in hospitals is an importantdeterrent from hospitalization. Previously, generous nutri-tional support in hospitals was supported by the Ministryof Health through obligatory nutritional requirements.Budgetary constraints, however, have meant that nutri-tional norms cannot be met. Moreover, general hospitalfunds do not have protected budget lines for meals ordrugs, meaning that these line items may suffer when otherpriorities exist (Coker et al. 2005).

‘Previously, nutritional provision was guaranteed, therewere norms and one had to stick to them! Now there areno norms, or the accounting department do not payattention to them. At the TB dispensary almost nothingis 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 nomoney for anything else. Patients then are robbed . . .’


Despite the multiple problems associated withhospitalization, home-based care is not a popularstrategy among health professionals. This is mainlydue to a long-term tradition favouring inpatient TBmanagement, geographical and other barriers to carethat lead to interrupted treatment, but also aperception that patients should be under dailyobservation and cannot be trusted to adhere to treatmentin their home.

Contextual factors

Socioeconomic barriers

A view that featured prominently in all discussions withhealth professionals was that care for different socio-economic groups should be targeted through differentstrategies. In recent years there has been a marked shiftin patients’ socioeconomic status. Whilst in the pastmost patients came from low socioeconomic statusgroups, participants suggested that TB is now notconfined to this group but crosses socioeconomic strata;patients are increasingly better off, better educated andwell-integrated into society or, in the terminology usedby many participants, ‘normal’. Disease incidence wasalso reported to have increased among the elderly and theyoung, among those suffering from other chronic diseases,and in women.

Participants identified fear of unemployment as a majorobstacle to patients seeking care and a reason for delays indiagnosis.

‘Many private firms do not give people paid sick leave. Itleads to a situation when people seek medical help only inthe most urgent cases, and when TB is already in anadvanced form. People are afraid of losing their jobs,and that’s why they don’t seek help.’


Despite treatment for TB being formally free, absenceof benefits to cover housing, transport and food isespecially problematic and obstructive to treatment,particularly when people potentially lose their jobsthrough illness.

Criminal justice system and civilian sector linkages

Health staff identified a number of barriers to the deliveryof effective treatment to prisoners. Firstly, it was perceivedthat prison health services frequently fail to provideappropriate treatment, which leads to development ofdrug resistance and sometimes treatment failure and death.Compounding this, participants thought that prisonersare frequently unwilling to comply with treatment.

Health system gaps in care between prison servicesand the civilian sector were highlighted in relation toreleased prisoners. Poor coordination between the twosectors and insufficient exchange of information oftenimpedes timely follow up of released patients.Moreover, lists of released prisoners frequentlyprovide inaccurate address details regarding where thepatients are expected to reside after they return to thecommunity.

Poverty means that most former prisoners struggleto travel to TB facilities when receiving ambulatorytreatment. Moreover, former prisoners often declinehospitalization because of the personal restrictionsincurred and institutions’ resemblance to prison settings.

‘. . . people come from the prison, we search for themaccording to the discharge list, and they are not at thereported address, often they have never livedthere . . .Most of them don’t work; employers don’ttake on those who have been to prison. It is very difficultto treat them in the community . . .’


Geography

Problems of physical access to care in geographicallyremote areas were clearly recognized by the participants.The remoteness of villages from town where specializedTB dispensaries are located, and lack of means to coverthe transportation costs, makes appropriate health careinaccessible to many rural inhabitants.

Cost of transport for patients is a problem not only inremote rural areas, but also in the larger cities becausepublic transport is unaffordable for many. Patients areoften referred for outpatient treatment to facilities, buttransport may be inadequate, too costly or low onpatients’ 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 abottle with it . . .We cannot attract them by anymeans . . .’




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Stigma

Discussion with the health care providers also demon-strated some public attitudes which are likely to hamperaccess to care. Stigma appeared to be a significant barrierto access to care. Most participating health staff wereaware of a sense of stigma attached to TB and how itpotentially influenced access to care. TB was seen as aninfectious, dangerous and threatening condition. Thesefeatures were associated with widespread negative percep-tions of TB as a ‘social disease’ confined to marginalizedpopulation groups who are often seen to be engaged inanti-social behaviour (‘social evils’). Participants sug-gested that the association of the disease with home-lessness, crime and imprisonment, alcohol abuse and otherforms of socially unacceptable behaviour irrationallymagnifies the perceived threat to public health and leadsto further marginalization and social exclusion of thosemarked by the disease. This is further enhanced by acultural tradition of intolerance to people who do notwork and ‘do not contribute to the society’, viewed as aself-determined way of life, a way of life that was‘criminalized’ in the past. People from less deprivedsections of society were reported to react with denialand disbelief when diagnosed with TB. These individualsin particular, it was noted, struggle to accept theirdiagnosis and frequently seek second opinions fromother medical specialists, leading to delays in the initiationof treatment.

‘The well-off people resist acknowledging [the diagno-sis]. For example, I know an ordinary family andtheir son, a teenager, was diagnosed with a severe formof TB. They couldn’t believe that. Such people . . . resortto alternative medicine and when at last they comeback to us, they have a more advanced form ofTB. They cannot accept the fact. ‘‘We are a normalfamily, where did we get . . . this social diseasefrom? . . .We have no TB in the family!’’’


Negative attitudes and lack of support from family,neighbours and the wider community were reported to bea significant barrier to ensuring continuity of treatment.Participants agreed that the adverse effects of stigmatiza-tion on the individual’s life can be compounded iftreatment is delivered by health care workers to patients’homes or to their place of work, because of the potentialfor disclosure of information on health status to friends,family and neighbours.

‘Society influences them. Even ‘normal’ peoplecannot endure it. Our population is ignorant.For example, people learn that their neighbour hasTB. . . . they wouldn’t say ‘‘hello’’ to him . . . familiesbreak down . . .men start to drink. We explain totheir wives that nobody is inured to the disease, andthat they, on the contrary, should help. If peoplebehave 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 organizetesting and treatment in the workplace and in thecommunity.

‘The health posts at the industrial enterprises are of nohelp. I can’t even tell them that their worker has TB.If I tell, then he will be an outcast at his workplace.’


Participants suggested that attitudes were not alwaysrelated to patients’ infectious status. Patients who are notinfectious and are physically able to work may still besubjected to discrimination and excluded from workby employers. Indeed, many individuals are effectivelyexcluded from the formal labour market. Within smallcommunities, this influences how physicians deal withissues of diagnosis, notification and confidentiality.

‘Let’s say a TB patient appeared in the rayon [area] andeveryone asks him ‘‘Why do you come here?’’ The headof the collective farm asks him the same. He does haveTB but he can work. The patient is not able to exercisehis rights, although he could actually go to the court!’

‘And I can’t say that someone has TB—one must be verycareful in the village.’


Perceptions of stigma also affect patients’ choice ofhospital. Indeed, many try to hide the fact that theyhave TB from their relatives and acquaintances and seektreatment in facilities remote from their home, which mayresult in intermittent treatment.

‘Some patients themselves request hospitalization here[outside Samara city]. For instance they don’t want toget treatment in Samara [city], because their acquain-tances, 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 TBaffects mostly socially disadvantaged people, those comingfrom the poorest sectors of society. The disease is associa-ted 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 descri-bed as ‘a drug addict, alcoholic, and antisocial or asocialperson’ who is also ‘unwilling to be treated’ or ‘resiststreatment by all means’. Former prisoners and homelesspeople were referred to as ‘the main sources of disease’ andthe ‘real breeders’ of TB (physicians, rural areas).

Patients were broadly divided into two groups in regard totreatment adherence: patients from relatively affluentsocial strata, who were perceived as being disciplined,‘wanting to get cured’ and adherent to treatment; andsocially disadvantaged patients who were ‘unwilling to betreated’ and ‘undisciplined’. However, participants also



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often referred to ‘typical’ TB patients who are difficult topersuade to adhere to treatment.

‘Willingness’ to access and adhere to treatment (also seen interms of ‘determination’) was seen as a critical factor insuccessful treatment outcomes. According to the healthstaff, patients from ‘decent’ families are more disciplined,and more likely to adhere to prescribed treatment regi-mens. These personal characteristics and the social contextfrom which patients come also appear to influence thestages at which they present and their speed of recovery.

‘. . . the well-off patients—they never have advancedforms [of disease].’

‘They follow all the doctors’ advice precisely, becausethey want to get healthy again. They let all members oftheir families to be tested, and trace their own contacts asfar as TB is concerned.’


Several physicians and nurses suggested that patients’behaviour and their perceptions were the principalbarriers to accessing appropriate care.

‘There are no barriers from our side.’(physicians, small town)

Patients’ knowledge

A perceived lack of awareness about TB amongst putativepatients leads to symptoms being ‘ignored’ and delays inseeking health care. Moreover, ‘denial’ is frequent, wherebecause of the stigma attached to TB, many individualsstruggle to accept the possibility that they may be affectedby a disease they associate with ‘anti-social’ and‘unworthy’ sectors of society. Insufficient knowledge iscommon amongst all socioeconomic groups and, it wasbelieved, is often associated with lack of interest in theirown health and a paucity of public health informationbeing conveyed by the public health system.

The non-specific nature of symptoms associated with TBwas identified as a major obstacle to timely diagnosis.Symptoms were frequently ignored, especially in thosewho consumed large amounts of alcohol or suffered fromchronic malnourishment.

‘The clinical presentation of TB itself, he is not ‘ill’—theman has no pain, until it all develops into inflammation orbleeding.’


Discussion

This study has elicited the perceptions of health careprofessionals on the multiple barriers to diagnosis andtreatment that permeate current TB control systems inRussia. The key perceived barriers fall into broad groupsthat are interlinked: barriers associated with the healthcare 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 mostsignificant. Access to care is hampered by resourceshortfalls, poor accessibility of diagnostic (especiallyscreening) facilities and poor quality of the care environ-ment. Health services provision is not specifically targetedto the needs of the vulnerable and marginalized individ-uals in that the most vulnerable appear to face what aresometimes insurmountable health care system barrierscompounded by the limited resources (personal resilienceor financial) they are able to draw upon. In the post-Soviet transition period, the social support previouslyprovided by the state for people suffering from TB—including rehabilitation care in sanatoria, affordableaccommodation and payment of long-term disabilitybenefits—has not been sustained due to shrinking publicbudgets, and the intersectoral linkages with the otherinstitutions, such as social services and the criminal justicesystem, have been disrupted. TB hospitals compensate forthese shortcomings by acting as social institutions thatprovide non-clinical social support (Atun et al. 2005d).

In addition to the inadequacy of financing, it wasperceived that the way the health system is financed hadalso created barriers to care, reflecting earlier researchfindings (Atun et al. 2005c). Moreover, poor linkagesbetween the verticalized elements of the TB system andbetween the TB system and social sector were frequentlyhighlighted as reasons for fractured continuity of care(Atun et al. 2005a).

Notably, HIV was rarely raised in FGDs. This may inpart be a consequence of the vertical separation of healthcare structures for TB and HIV, but may also be a resultof a lack of awareness and concern because of theimmaturity of the HIV epidemic (Drobniewski et al. 2004;Coker et al. 2006) and wider socio-political contextualfactors (Atun et al. 2005e).

Clearly, to address these health system fractures, reformof the health system and intersectoral approaches areneeded. Effectively addressing these barriers to care byembedding incentives to ensure access to diagnosis andsustainable treatment, as well as establishing intersectoralapproaches to managing TB to ensure continuity, areprofound challenges that demand fundamental and multi-faceted reforms of health and social care systems (Atunet al. 2005a). For such reforms to succeed, the views andattitudes of providers must be taken into account, as wellas a parallel process of reform of professional rolesand functions (Longest et al. 2004). Further, the reformprocess is not a linear and rational one and will beinfluenced, amongst others, by the wider social andpolitical environment within which the system isembedded (Atkinson 2002), contextual factors(Fitzgerald et al. 2002) and endorsement by ‘peer’ or‘expert’ opinion leaders (Locock et al. 2001). It is not clearthat a favourable environment exists in Russia for suchfundamental reforms.



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Suboptimal care processes further hinder TB control.Historically, the Russian Federation developed its ownsystem of case-finding, treatment and reporting practicesfor TB, where X-Ray screening is the norm and new casesare hospitalized for treatment according to care guidelinesspecified in regulations (Coker et al. 2003). Evidence fromother countries, however, suggests that outpatient care forTB 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 short-comings identified would require a fundamental redesignof the TB control system, with innovative care models thatrespond to human and social need developed and carefullyexecuted so as not to further disrupt care. Despite theshortcomings identified, our study shows that most ofthe ‘frontline’ stakeholders, including clinicians andpatients involved in control efforts, favour the currentcare provision system. Achieving strategic change wouldtherefore be very challenging, and require ‘ownership’ bystakeholders as well as changes in deeply held culturalattitudes (Ogden et al. 2003).

Public attitudes and stigma appear to be importantdeterrents from seeking timely care, the consequences ofwhich are not only damaging to the personal well-beingof TB patients, but also likely undermine effective TBcontrol and promote disease transmission. Changingpublic attitudes towards people with TB could beaddressed in the long term through information cam-paigns about TB and its treatment, using existingcommunication channels to convey messages; and creat-ing user-friendly entry points for diagnosis and treatment.

Despite the barriers that patients face, many providers stillbelieve that accessing treatment depends on the patients’good will and fundamentally remains the responsibility ofpatients, a familiar refrain (Farmer 2001). Thus, it is apopular view of health care professionals that treatmentshould be mandatory for ‘undisciplined’ patients who ‘donot want to get treatment’. However, many health careprofessionals were aware that this proposition is ethicallyproblematic because it potentially reinforces stigma,marginalizes further already vulnerable individuals, andmay hinder the effective and timely provision of care.

Recognizing and defining the scope and nature of theexisting barriers to access to care is important if accessto care is to improve. Professionals’ attitudes need to beunderstood and to inform the change process. Models ofgood practice exist and most professionals are clearlycommitted to both their work and the patients whose carethey are responsible for. Frequently forces beyond theircontrol mean that their efforts result in limited publichealth improvements. If the energy, skills and knowledgeof health care professionals are to be drawn upon effec-tively in efforts to control TB, then reform processes –including shifts to ambulatory care, restructuring of TBdetection, treatment and care facilities and provisionof social support – need to be informed by professionals’knowledge, experience and insights.

In the short term, the health systems, social sector and thegeneral views held by health professionals mean that largeimprovements in the efficiency of TB control and healthsystems changes in Russia would be difficult to introduce.However, some barriers, including regulations governingclinical care and reporting systems (Ministry of Health2003, 2004), have recently been addressed in support ofinternational standards. In the medium-term, it shouldbe feasible to develop a change programme to positivelyinfluence stakeholder attitudes, revise existing approachesto care and modify the health system to improvefinancing, resource allocation and intersectoral linkages,but only if a multifaceted and systemic change programmeinvolving all the key stakeholders is adopted.

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Acknowledgements

The authors wish to thank colleagues from Samara State Universityfor their assistance in data collection and analysis, the physiciansand nurses who shared their knowledge, experience and insights, andthe staff of Samara Oblast Health Department for facilitating thisresearch. This work was funded by the UK Department forInternational Development, London, UK.

Biographies

Boika Dimitrova is a Research Fellow in the European Centre onHealth of Societies in Transition, Department of Public Health andPolicy, London School of Hygiene and Tropical Medicine, UK.

Dina Balabanova, MSc, PhD, is a Lecturer in the Health PolicyUnit, Department of Public Health and Policy, London School ofHygiene and Tropical Medicine (LSHTM), UK.

Rifat A Atun, MBBS, MBA, DIC, FRCGP, MFPH, is Readerin International Health Management and Director, Centre forHealth Management, Tanaka Business School, Imperial CollegeLondon, UK.

Francis Drobniewski, MSc, PhD, MRCPath, is Professor ofTuberculosis in the Department of Infectious Diseases, Guy’sKing’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 PublicHealth in the Health Services Research Unit, Department of PublicHealth and Policy, London School of Hygiene and TropicalMedicine, UK.

Correspondence: Dr Richard Coker, Department of Public Healthand Policy, London School of Hygiene and Tropical Medicine,Keppel Street, London, WC1E 7HT UK. Tel: þ44 (0) 207 927 2926;Fax: þ44 (0) 207 612 7812; E-mail: [email protected]



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Health service providers' perceptions of barriers to tuberculosis care in Russia

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