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Belak andrej health_system_limitations_of_roma_health_in_slovakia_isbn9788097147525
 

Belak andrej health_system_limitations_of_roma_health_in_slovakia_isbn9788097147525

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In the publication, Charles University anthropologist Andrej Belák offers a pragmatic summary of his field research focused on how and why steep health disparities among Roma and non-Roma in the ...

In the publication, Charles University anthropologist Andrej Belák offers a pragmatic summary of his field research focused on how and why steep health disparities among Roma and non-Roma in the region might paradoxically be contributed by health-systems, too.

Antropológ Andrej Belák z Karlovej univerzity v publikácii ponúka pragmatické zhrnutie svojho terénneho výskumu, zameraného na otázky ako a prečo k príkrym rozdielom v zdraví medzi Rómami a Nerómami v regióne môžu prispievať paradoxne i systémy zdravotníctva.

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    Belak andrej health_system_limitations_of_roma_health_in_slovakia_isbn9788097147525 Belak andrej health_system_limitations_of_roma_health_in_slovakia_isbn9788097147525 Document Transcript

    • ANDREJ BELÁK Health-system limitations of Roma health in Slovakia A qualitative study
    • Publication details Author: Andrej Belák, MSc. ISBN: 978-80-971475-2-5 Consultants: Chris Brown, PhD. Tereza Stöckelová, PhD. Reviewers: Tomáš Hrustič, PhD. Doc. Andrea Madarasová Gecková, PhD. Language proof: David L. McLean Design and Layout: René Říha Photo: ©CandyBox-Images/Fotky&Foto, René Říha Press: EQUILIBRIA, s.r.o., Košice For circulation please contact PaedDr. Marek Kmeť – EDUCON info@educon.sk Health-system limitations of Roma health in Slovakia: A qualitative study
    • Acknowledgments This work was supported by the WHO Country Office in Slovakia; Charles University in Prague, Faculty of Humanities; the Slovak Research and Development Agency under the contract no. APVV-0032-11; and the Agency of the Slovak Ministry of Education for the Structural Funds of the EU under project ITMS: 26220120058 (30%). The author would like to cordially thank all anonymous health-system employees, clients and owners who participated in the study. Should anything below help anyone in any way, it is mainly due to the study consultants’ brave willingness to share personal space and experiences with a complete stranger. Hopefully, they will be able to forgive eventual unfortunate misinterpretations, given that there were no intentional ones and given that this report might present the initial input for a broader and welcoming discussion of their everyday issues. In addition, Dr. Darina Sedláková from the WHO Country Office in Bratislava and Dr. Andrea Madarasová Gecková from P. J. Šafárik University in Košice need to be thanked in person for taking on board a socio-cultural anthropologist. Acronyms ACEC Association for Culture Education and Communication CSDH WHO Commission on Social Determinants of Health SES Socioeconomic Status WHO World Health Organization Andrej Belák 1
    • Table of contents Acknowledgments ............................................................................................. 1 Acronyms ........................................................................................................... 1 Foreword ........................................................................................................... 3 Summary ........................................................................................................... 5 Introduction ...................................................................................................... 7 Part 1. Design .................................................................................................... 13 Basic specifications ........................................................................................... 15 Limitations ........................................................................................................ 17 Advantages ....................................................................................................... 18 Part 2. Findings ................................................................................................. 19 Types of limitations experienced ...................................................................... 21 Sources of limitations experienced ................................................................... 32 Part 3. Recommendations ................................................................................. 41 General strategy proposed for application of the findings ............................... 43 Overreaching dilemmas for consideration with respect to Roma health ......... 44 References ........................................................................................................ 49 Zhrnutie ............................................................................................................ 53 2 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Foreword  According to the WHO Constitution, the enjoyment of the highest attainable standard of health is one of the basic rights of every human being regardless of race, religion, political beliefs or economic and social condition. This does not mean the right to be healthy, nor does it mean that poor governments must put in place expensive health services for which they have no resources. It does require governments and public authorities to put in place policies and action plans which will lead to available and accessible health care for all in the shortest possible time. The right to health in all its forms and at all levels contains five interrelated and essential elements: availability, accessibility, affordability, acceptability and quality. States are under the obligation to respect the right to health and they should refrain from limiting any of the five elements. And yet it seems that in many countries, including Slovakia, there are problems regarding the right to health as described above. This leads to health disparities and a health divide between countries but also has implications on the in-country situation. Slovakia has one of the largest Roma minorities in Europe, estimated to be nearly a half-million people. Despite the universal knowledge that the health condition of Roma is lagging behind in practically all parameters compared with the majority population, only scarce evidence-based work proving this was available in the past. And it was only recently that researchers started to be interested in the “causes of causes” of this situation. In this publication, the author and his colleagues assess and analyse the limitations in the Slovak health system to respond to needs and expectations for improving the health status of Roma – individuals, families and communities – how it defends them against health threats or provides access to people-centred care, with a specific focus on primary and specialised outpatient care. The interviewed health care professionals, mostly physicians, provided a lot of information, experience and attitudes towards their work and their “clients”; this information was then processed into a set of general problems (“limitations”) arising from the everyday work of health care professionals either in their offices or in the field, as well as into a set of Roma-specific problems. The fact that they were ready to identify different problems when talking about health services for Roma indicated that they needed to approach them differently. Unfortunately, the health system has not always allowed this due to various limitations on various levels. Unfortunately, the health system has not always allowed this due to various limitations on various levels. These comprise not only the traditionally mentioned shortage or under-financing of the health workforce, but also a lack of understanding of the needs and expectations of Roma, public health subordination to politico-economic regimes and escalated political connotations of Roma-related work. Andrej Belák 3
    • The study calls for both professional and public consideration in reviewing the identified principal dilemmas related to Roma health-status disparities and offers health-system owners and administrators a strategy for verification and application of the findings. These are in line with the conclusions and recommendations of the most important documents adopted by the member states in the WHO European Region, namely the Review of social determinants and the health divide – final report, and Health 2020 – European policy framework supporting action across government and society for health and well-being. At the same time we have to point out that a health system alone cannot ensure good health unless there is a high-level political support to mobilize the involvement of other sectors and social and policy environment support for reducing inequities and changing individual behaviour. Health equity cannot be seen in isolation; rather, it must come to grips with the larger issue of fairness and justice in social arrangements, including economic allocations and paying appropriate attention to the role of health in human life and freedom. Without a whole-of-society and whole-of-government approach, success will never be complete. Darina Sedláková Head of WHO Country Office in Slovakia 4 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Summary The relatively poor health status of the Roma population in Slovakia ranks among the widest, steepest and most enduring intra-state health disparities in Central and Eastern Europe. The presented qualitative study examined how and why, paradoxically, this and analogous inequities might be systematically supported by the respective countries’ own health systems, too. Aimed primarily at researchers pursuing analogous questions, the first part of the publication reviews the basic specifications, limitations and advantages of the study design. In the second part, the main study findings are summarised, offering types, sources and differential negative effects of limitations in everyday health-system practice, as experienced from within by consulted Roma-serving practitioners. The publication closes with recommendations for various groups the study has identified as being involved or being advisable for future involvement. In particular, the Findings include descriptions, sources and possible negative differential health effects of the following types of limitations (respecting consulted practitioners’ language): General limitations in emergency-rescue and clinical practices »» Lack of appreciation »» orkload beyond the scope of the profession W »» nsufficient capacities I »» ack of solidarity among practitioners L »» rowing general public ignorance regarding health G »» Crisis of confidence in own expertise Andrej Belák 5
    • Roma-specific limitations in emergency-rescue and clinical practices »» oor functionality of clinical standards P »» ggressive Roma behaviour A »» ounselling and welfare workload beyond scope of the profession C »» ow hygienic standards within segregated Roma settlements L »» ruly racist practices T General limitations in population health research, surveillance and intervention »» ack of experience in research L »» tate public health subordination to politico-economic regimes S Roma-specific limitations in population health research, surveillance and intervention »» oor functionality of population standards P »» scalated political connotations of Roma-related work E The study Recommendations offer a 5-step strategy for verification and application of the above findings to owners of health-system operations and close with a review of 5 overreaching principal dilemmas identified with respect to health-status disparities involving Roma for both professional and public consideration: »» A generalised or a varied understanding of health equity? »» Generalised or varied sets of standards for health-system practices? »» Adjusting emergency-rescue and clinical practices to professional education and training or vice versa? »» Fighting or healing racism? »» Expert or politico-economic control of public health issues? 6 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Introduction “The fact that individuals have unique and incommensurable views of the world does not mean they cannot become friends, or lovers, or work on common projects.” David Graeber (2004) Andrej Belák 7
    • Introduction Drawing from fragmentary historical indices (Crowe 2007; Fraser 1995; Horváthová 1964), intra-state health disparities involving Central and East European Roma are likely to present the steepest, widest and most enduring health gradients in the region ever. Reviews of the health status of contemporary Roma (EUC 2004; Hajioff and McKee 2000; Ringold, et al. 2005; Sepkowitz 2006; Zeman, et al. 2003) as well as lately amassing social epidemiological resumes (Cook, et al. 2013; FRAEU and UNDP 2012; FSG 2009; Kosa, et al. 2007; Masseria, et al. 2010) support such a proposition. Across countries, despite centuries of intense sporadic campaigns targeting various aspects of Roma otherness, the majority of Roma continue to live much shorter lives and to exhibit higher morbidity in comparison with non-Roma citizens. For approximately 400 000 Roma living in Slovakia today, the situation appears to be identical (Cook, et al. 2013; Kolarcik, et al. 2009; Koupilova, et al. 2001; Popper, et al. 2009; Rosicova, et al. 2009). What do we know about what maintains these disparities? How might this knowledge be used to support authentic Roma health needs? For answering such questions, the World Health Organization’s (WHO) multilevel framework on reducing health inequities, developed by the Commission on Social Determinants of Health (CSDH) (CSDH 2008) and endorsed by Member States in the World Health Resolution of 2009 (WHA62/2009/REC/1), provides an indispensable tool to start with. Summing up correlations accumulated by social epidemiologists over the last 50+ years, it lets us know what (levels of) health outcomes have so far typically occurred based on what (levels of) ‘social conditions’. It thus presents an unprecedented guideline for empirically based hypothesising and analysing of social inequities in further particular settings. Yet, as routinely acknowledged by most prominent social epidemiologists (Berkman and Kawachi 2000; Kaplan 2004; Krieger 2011; Marmot and Wilkinson 2006; McMichael 1999; Susser and Stein 2009), including the CSDH framework’s very convenors themselves (Solar and Irwin 2007), from analogous reviews of common proxies there is still a long way to answering what these might mean for particular groups of people both practically and morally. Admitting with its many reverse causation pathways (Figure 1), the framework does not pretend to pose an unambiguous causal model – all of its suggestions of causality might not hold true everywhere. Moreover, where anticipated causal relations get confirmed through statistical observations, these alone do not indicate how which of them could (in terms of technical means) and should (according to the preferences of the people involved) be intervened upon. 8 Health-system limitations of Roma health in Slovakia: A qualitative study
    • These limits are nowhere as salient as when approaching exactly ‘ethnic’ health disparities. Here, even methodologically rigorous designs examining correlations thus far found almost universally – such as the relationship between socioeconomic status (SES) and health outcomes – do not provide answers in the above respects (Dressler, et al. 2005; Smith 2000). First of all, in the cases of many socially excluded and/or marginalized ethnic groups, there might not be enough unassimilated members to compare with at the higher end of the SES spectrum. Second, where such comparisons are being made, SES usually proves unable to explain differences in all the measures of health outcomes employed (and sometimes none). Third, for the remaining proxies, where there seems to be a strong statistical relationship between SES and health outcomes, it still leaves us with clues neither regarding why the SES of the given ethnic group is systematically lower than that of majority compared with, nor how exactly does low SES in the case of the ethnic group examined damage its members’ very bodies. Last but not least, interventions against the examined disparities usually evoked in the conclusions are not being outlined in practical terms and within the targeted people’s known preferences. Figure 1 Location of the study’s object within the CSDH Framework Considering the country’s whole health system rather than just health care (the cross-out), the study focused on its relations with all: Roma differential health status (typical object of analogous studies in the traditional quantitative approach; first red circle from the right), Roma themselves including with respect to their specifics (the second and the third circle), as well as with its own social determinants directly (the added arrow and the last circle) (CSDH 2008) Andrej Belák 9
    • Recent Roma-related SES epidemiological research (accounting for the vast majority of epidemiological research approaching Roma currently undertaken) matches this picture, too. There are too few segregated Roma with an SES comparable to  that of  the respective majorities above the lowest segment of the SES spectrums. Standard SES hypotheses usually do not hold true for all proxies examined as anticipated. The question of why many more Roma live at the lower end of the chosen SES spectrums is being missed, as is the question of how low SES specifically affects Roma health. Consequently, even the most rigorous SES studies contemplating Roma-involving health disparities typically conclude either with their results being ‘inconclusive’, or with claims that are both exaggerated (e.g. ethnicity effects are mediated by SES – as if the two proxies were separable in reality) and uninstructive (e.g. socioeconomic situation of Roma needs to be improved in order for their health status to increase). Or, at their best, vaguely quoting possible ‘cultural influences.’ Simultaneously, no Roma views regarding anything of the above are being taken into account at any stage (Kolarcik, et al. 2009; Voko, et al. 2009). To move beyond the above illustrated limits of the traditional social epidemiological approach, empirical investigation is needed into additional questions such as: Are particular causal suggestions from the framework feasible considering the actual settings of the group of people in question? Are they present? If so, what and who makes the identified patterns of ‘underlying social determinants’ the way they are patterned (the causes of ‘distal causes’)? How do they actually damage human bodies (the ‘mechanisms’ of ‘distal causes’ effects’)? Who holds the means for shaping and changing these causes and effects? What are the possibilities for improvement that are both practically possible and morally acceptable to all people involved? As a strategy for addressing such questions, the CSDH itself suggests putting an additional accent on examining ‘context’. While the very notion of context has so far not been fully elaborated directly within CSDH materials (CSDH 2008; Solar and Irwin 2007; WHO 2013), its uses therein appear compatible with recent interdisciplinary accounts of the same domain of problems (Dressler 2005; Frohlich, et al. 2001; Krieger 1999; Popay, et al. 1998). In these, ‘context’ is an acronym for all specific contingencies of local histories, including the shared circumstances and understandings of involved actors (or what is commonly termed ‘cultural influence’ in the traditional biomedical literature). In other words, to account for questions critical for efficient and non-paternalistic assistance regarding health inequities, apart from examining whether and to what extent which CSDH framework suggestions hold true statistically, for particular health disparities there is also a need to examine empirically what is such relations’ place in both local history and local understandings. 10 Health-system limitations of Roma health in Slovakia: A qualitative study
    • How can such a complex task be achieved in practice? One well established route is the generation of related empirically testable hypotheses via qualitative research. In the words of CSDH: “Understanding the impact that context has on health inequities and the effectiveness of interventions requires a rich evidence base that includes both qualitative and quantitative data” (CSDH 2008). The basic idea behind qualitative research strategies is simple: to surface feasible possibilities within particular settings by getting to know and talking to their inhabitants and stakeholders. Such was the approach of the study presented here. An amended version of the CSDH framework has been taken as a starting point (Figure 1) and a generation of complex and empirically testable hypotheses has been attempted on both the actual and possible roles of one of the framework’s particular agents – the health system – regarding Roma-involving health disparity in contemporary Slovakia. In-depth interviews were undertaken with Roma-serving health system professionals in their everyday settings after a period of the researcher’s personal familiarization with the selected operations’ routines. The professions included were: employees of state public health authorities, epidemiologists in research, hospital nurses and specialists, general practitioners and health-workers in various emergency-rescue positions. The focus of the study was picked neither at random nor does it suggest that the health system is the most important agent contributing to the enduring Roma health disparity in the country. With reference to the CSDH framework, a wide range of other people and institutions are likely to be relevant: from politicians and business owners, through various local authorities, to Roma themselves. Rather, the choice presents but one particular step in the author’s broader qualitative approach to the topic: a multi-sited research (Fassin 2013; Marcus 1995) beginning within the segregated Roma communities themselves (ethnographic research 2004-2010: Belák 2005; Belák 2013) and following outwards to visit, observe and interrogate regarding their contributions all other agents indicated as potentially involved. Andrej Belák 11
    • In conclusion, it might be worth summing up this introduction by briefly comparing the study approach described above (and in Part I in more detail) with another recent study examining similar topic in a more traditional way. According to a general trend in quantitative social epidemiological research compatible with the CSDH framework (Solar and Irwin 2007), in their attempt to examine the contribution of health-system operations to Roma involving health disparity in Slovakia, Jarcuska, et al. (2013) have chosen to concentrate on Roma health-care access. As a result, they have confirmed – importantly – a generally well established hypothesis that people with poorer access to health care tend to have poorer health status. All that their study has asked and answered thus is, whether and how strongly does one of the causal pathways set out in the CSDH framework also hold true for segregated Roma in Slovakia. In contrast, the research presented here has attempted to generate additional hypotheses about why (because of what and whom) and how (in terms of effect pathways) might this association be contributing to the disparity, as well as what could and should be done about it, how and by whom, according to the country’s involved health-system practitioners. The two studies are not in contradiction with each other rather they are complimentary pieces of a quest for a more complex picture. Within CSDH’s framework itself, the comparison of the studies’ objects can be seen schematically in Figure 1. 12 Health-system limitations of Roma health in Slovakia: A qualitative study
    • 1 Part 1. Design “We may transform social science into an activity done in public for the public, sometimes to clarify, sometimes to intervene, sometimes to generate new perspectives, and always to serve as eyes and ears in our ongoing efforts at understanding the present and deliberating about the future.” Bent Flyvbjerg (2001) Andrej Belák 13
    • Part 1. Design THE PRESENTED STUDY WAS DESIGNED AND CARRIED OUT AS PART OF A BROADER MULTI-SITED QUALITATIVE RESEARCH FOLLOWING ALL CONTRIBUTORS TO HEALTH DISPARITIES INVOLVING ROMA IN SLOVAKIA SUGGESTED BY THE CSDH FRAMEWORK ON HEALTH INEQUITIES. AS SUCH, IT CAN BE UNDERSTOOD AS A RESPONSE TO THE CSDH’S CALL FOR BETTER CONTEXTUALISATION OF PUBLIC HEALTH AGENDAS TARGETING PARTICULAR HEALTH INEQUITIES VIA MORE SUBSTANTIAL INVOLVEMENT OF QUALITATIVE METHODS (CSDH 2008; see also Introduction). METHODOLOGICALLY SPEAKING, THE RESEARCH AIMED AT GENERATING BOTH PRACTICALLY AND MORALLY SENSITIVE HYPOTHESES REGARDING THE EXISTING CONTRIBUTIONS OF AND AVAILABLE OPTIONS WITHIN HEALTH-SYSTEM PROCESSES AND PRACTICES WITH RESPECT TO THE TARGETED HEALTH DISPARITY. TO ACHIEVE THIS, IT EMPLOYED A STANDARD QUALITATIVE RESEARCH STRATEGY, COMBINING FEATURES OF QUALITATIVE SURVEYS AND OF THE ETHNOGRAPHIC GENRE. SYSTEMIC LIMITATIONS AS EXPERIENCED IN EVERYDAY PRACTICE WERE DISCUSSED WITH DIRECTLY INVOLVED HEALTH-SYSTEM PRACTITIONERS ACROSS PLACES AND PROFESSIONS IN THE COUNTRY. IN LINE WITH THE CSDH’S RECENT EMPHASIS ON “RESPECT”, ESPECIALLY WHEN APPROACHING ”VULNERABLE GROUPS” (WHO 2013), IN ADDITION TO GENERATING NEW HYPOTHESES THE STUDY SIMULTANEOUSLY AIMED AT INSPIRING AND FACILITATING WELCOMING COOPERATION OF ALL ACTORS IDENTIFIED AS BEING INVOLVED OR AS BEING ADVISABLE FOR INVOLVEMENT. THIS WAS ATTEMPTED BY SUBORDINATION OF THE RESEARCH DESIGN AND OUTPUTS TO A SPECIFIC RELATIONAL AND PRAGMATICALLY OPEN-ENDED SOCIAL RESEARCH APPROACH. TERMED “PHRONETIC” BY ITS CONVENOR AND PROPONENT, THE APPROACH SUBSCRIBES TO ”PRODUCING INPUT TO THE ONGOING SOCIAL DIALOGUE AND PRAXIS IN SOCIETY, RATHER THAN GENERATING ULTIMATE, UNEQUIVOCALLY VERIFIED KNOWLEDGE” (Flyvbjerg 2001). 14 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Basic specifications Epistemology Following relational sociological assumptions, for purposes of the study the examined health-system processes and practices were understood as being patterned by historical accumulations susceptible to both contingencies and the involved actors’ interpretations, i.e. not as processes strictly following any deterministic laws. Therefore, the generation of hypotheses was intentionally conceived of so as not to be based on filling in any preconceived causal models (such as top-down critical, or bottom-up individualist rational action social theories). Instead, while imagining the involved actors as both contributing to and familiar with the existing patterns in their everyday lives primarily at an unconscious level (Bourdieu 2000), for the hypothetical reconstruction of their systemic on-the-job limitations and options (both ‘structural’ and ‘behavioural’) the design took as a point of departure the actors’ assumed ability to reflect on both in a practically and morally well-informed manner (Frohlich, et al. 2001; Popay, et al. 1998; Sen 1985; Williams 1995). Such epistemological openness, indiscriminate of the nature or logic of the consultants’ descriptions or reasoning, was at the same time expected to encourage authentic interest from the people involved in entering the eventual future composition and negotiation of related health-system organisational adjustments (Flyvbjerg 2001; Latour 2010). Methods The traditional qualitative tool of in-depth interviews was used as a main method of data construction (Baker 1999), but in most cases these were only carried out following previous personal familiarisation of the interviewing author with the everyday routines of the interviewees’ operations, consisting in job-shadowing and informal discussions with other staff (some owners did not allow for this to take place on their premises). Such mimicking of the ethnographic approach was supposed to enhance the level of practical detail and intimacy of the closing in-depth interviews (Hammersley and Atkinson 2007; Reeves, et al. 2008). While in-depth, the closing interviews revolved around a few generic questions suggested by the interviewer (here in their informal phrasing): »» Why do you work in the profession? »» Generally, what do you consider to be the main limitations of your everyday practice on the job, i.e. limitations preventing the work in your operation from being done the way it could and should be done? »» How would you characterise the specifics of Roma clients, if there are any? »» What do you consider to be the main limitations of your everyday practice on the job with respect to Roma clients specifically? »» Do you know of any racist practices in your operations? During the in-depth discussions pursuing these topics, the interviewing author concentrated on reconstruction of the consultants’ practical reasoning through additional questions, such as: »» Why don’t you like this? Why do you think this is inappropriate? »» Why do you think this is so? Who do you think is responsible for it? »» What do you think could and should be done about this? By whom? Why? Andrej Belák 15
    • Seeking most pressing issues rather than representativeness, sampling was carried out on a fit-for-purpose basis: selected operations and professionals were invited to join the study based on their practice serving in or targeting geographic areas with the highest proportion of Roma residency and based on their specialisation areas being casually reported as experiencing the most practical difficulties (most of the consultants were approached randomly, some based on recommendations of their operations’ owners). Hoping to generate as many different hypotheses and insights as possible, the particular closing interviewees were selected following the highest possible variability in terms of their age, gender, length of practice and specialisation. Recursive abstraction, consisting in the repeated reading and non-exclusive summarizing of field notes and closing interviews, was used for data analysis (LeCompte and Schensul 2013). Thus, types, sources and differential negative health-effects of limitations constraining particular health-system operations on a daily basis were constructed. These are presented in the report’s Findings. Based on these findings and on additional facts from related literature, tentative recommendations were proposed for the particular actors found involved or found advisable for future involvement (Recommendations). This inviting way of formulating and presenting findings was thought of as an encouragement for broader than usual scrutiny and cooperation with respect to eventual problems confirmed following Bent Flyvbjerg’s concept of pragmatic relational social research: “In this scenario, the purpose of social science is not to develop theory, but to contribute to society’s practical rationality in elucidating where we are, where we want to go and what is desirable according to diverse sets of values and interests.” (Flyvbjerg 2001). Execution From August to October 2013, the author spent 3 months visiting, observing and interviewing health-system practitioners in the two Slovak counties with the most Roma inhabitants (Prešov VÚC and Košice VÚC). After becoming familiar with the daily routines of approximately 40 professionals (ranging from spending night shifts accompanying emergency-rescue teams to interventions through spending days observing clinical encounters of a hospital paediatrician) and a great number of informal discussions, he recorded 20 closing in-depth interviews. Recorded interviewees’ specifications: »» Emergency-rescue physicians (3) and an emergency-rescue assistant (1) »» urses (4) and specialist clinicians (8) in hospital wards (obstetrics, paediatric, N internal medicine) »» eneral practitioners (2) G »» pidemiologist researcher (1) E »» ublic health officer (1) P »» ounties of practice: Prešov VÚC (12), Košice VÚC (8) C »» ender: 7 men, 13 women G »» ge span: 26 - 63 years A »» ength of practice span: 1 – 38 years L »» upervising positions: 10 of 20 (2 directors of whole institutions) S 16 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Limitations Some of the design’s limitations are inherent to the particular qualitative methods employed: »» he accuracy of the consultants’ assertions is questionable (perhaps especially T regarding racist practices, given the high public contentiousness of the issue) »» he generalization potential of the findings is questionable as well (although this T usualy is not a problem with case-studies of sufficient depth: Flyvbjerg 2006) Additional limitations of the study were specific to this particular realisation: »» ue to time and budgetary constraints, the scope of the research was too D narrow given the breadth of the topic (in particular, more direct observation and more discussions with the visited operations’ managements and owners would probably be of extra benefit; saturation in terms of types of limitations pertinent for particular specialisations remains questionable) »» hile the response rate among the practicing employees was high (only 2 W of 22 approached practitioners refused to be recorded, and none refused to discuss the proposed themes in full), most operation owners were hesitant to approve involvement in the study despite assurances that their institutions and participating individuals would remain anonymous (one large central hospital refused to cooperate whatsoever) Andrej Belák 17
    • Advantages Some of the design’s advantages are inherent to the particular qualitative methods employed: »» n most cases, the nature of the recorded in-depth interviews was informal I (preventing excessive performativity in responses and allowing for greater depth based on greater intimacy) and the interviewer was previously familiarised with the operations’ routines (allowing for identification and easier resolution of numerous neglected or seeming contradictions in the consultants’ statements) – both thanks to the employment of ethnographic features (observant familiarisation and personal rapport building) »» ecorded consultants’ rationales were indiscriminate in terms of the nature R of causal agents (sources of limitations ranged from political and historical through individual to material and technological) and complex – both thanks to the employment of relational sociological assumptions and of in-depth interviews Additional advantages of the study were specific to this particular realisation: »» ost of the consultants were very open about all of the themes and expressed M appreciation for being talked to about their experience in the performed manner, probably thanks to a combination of their long-term on-the-job frustration and lack of feedback (many suggested spontaneously that there was no need to make their contribution anonymous, some considered the discussions therapeutic) »» he consultants’ interpretations of segregated Roma specifics could have been T discussed in great detail (of revealing depth according to many) given the author’s previous personal familiarity with both the related social scientific literature as well as with particular instance of segregated Roma everyday settings and life 18 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Part 2. Findings “One thus has to acknowledge that practice has a logic which is not that of logic, if one is to avoid asking of it more logic than it can give, thereby condemning oneself either to wring incoherencies out of it or to thrust upon it a forced coherence.” 2 Pierre Bourdieu (1977) Andrej Belák 19
    • Part 2. Findings AS STUDY RESULTS, THE CONSULTED HEALTH-SYSTEM PRACTITIONERS’ EXPERIENCES OF SYSTEMIC LIMITATIONS TO THEIR EVERYDAY OPERATIONS ARE OFFERED FIRST, SUMMARISED INTO TYPES. ALL THESE TYPES PRESENT PARTICULAR TESTABLE HYPOTHESES ABOUT WHAT EXISTING ASPECTS OF HEALTH-SYSTEM OPERATIONS’ PROCESSES AND PRACTICES MIGHT BE CONTRIBUTING TO THE EXISTING HEALTH DISPARITIES INVOLVING ROMA IN SLOVAKIA. UPON CONSTRUCTION OF THE TYPES, NO EXPERIENCES SHARED WERE LEFT OUT BASED ON THEIR SCARCITY (THEY REMAIN QUOTED SPECIFICALLY). RECURRENT AND ANALOGOUS EXPERIENCES WERE MERGED INTO A COMMON TYPE WITH STRESSING AN ESTIMATE OF THEIR PARTICULAR FREQUENCIES WHERE POSSIBLE. THE TYPES OF LIMITATION EXPERIENCES WHICH THE PRACTITIONERS FOUND HAD NO RELATION TO THE FACT THAT MOST OF THEIR CLIENTS WERE ROMA ARE GROUPED UNDER “GENERAL LIMITATIONS”. LIMITATIONS CONSIDERED SPECIFIC TO A ROMA-INVOLVING PRACTICE FOLLOW BELOW, GROUPED AS ”ROMA-SPECIFIC”. FOR EACH OF THESE GROUPS OF LIMITATION TYPES, A LIST OF THE THEORETICALLY POSSIBLE (ACCORDING TO THE CSDH FRAMEWORK) OR ALREADY OBVIOUS (ACCORDING TO THE PRACTITIONERS) NEGATIVE INFLUENCES THEY HAVE SPECIFICALLY ON ROMA HEALTH STATUS ARE PROVIDED. THESE PRESENT TESTABLE HYPOTHESES REGARDING HOW EXACTLY THE ABOVE LIMITATIONS MIGHT BE AFFECTING THE HEALTH OF THE ROMA SPECIFICALLY. NEXT, FOR ALL OF THE PARTICULAR EXPERIENCES OF THE LIMITATIONS DOCUMENTED, ALL OF THEIR POSSIBLE SOURCES ARE LISTED INDISCRIMINATELY (REGARDLESS OF THEIR MATERIAL, SOCIAL, POLITICAL, HISTORICAL OR OTHER NATURES). THESE PRESENT TESTABLE HYPOTHESES ABOUT WHY – AS A RESULT OF WHAT AND BECAUSE OF WHOM – THE LIMITATIONS MIGHT BE IN PLACE. THEY ARE RECURRENTLY SORTED ACCORDING TO EACH OF THE EXPERIENCE TYPES THEY WERE SUPPOSED TO MAINTAIN (MANY OF THE SOURCES QUOTED WERE CONSIDERED TO MAINTAIN MORE THAN ONE TYPE OF LIMITATION EXPERIENCE). THE DESCRIPTIONS AND LANGUAGE OF BOTH THE EXPERIENCED LIMITATION TYPES AND THEIR ALLEGED SOURCES WERE CAREFULLY PICKED IN ORDER FOR THEM TO REMAIN CONSISTENT WITH THE ORIGINAL FIELD NOTES AND RECORDINGS. DUE TO THIS DEVOTION TO AUTHENTICITY, SOME OF THE PRESENTED DATA MIGHT DISTURB SOME READERS AS BEING TOO DISTANT FROM VARIOUS POLITICALLY OR SCIENTIFICALLY ENDORSED DISCOURSES. SHOULD THIS INDEED BE THE CASE, THOSE OFFENDED ARE ADVISED NOT TO JUDGE TOO HASTILY AND TO RECALL THAT THE PRACTITIONERS WERE KIND ENOUGH TO SHARE THEIR ACTUAL VIEWS IN ORDER TO HELP EVERYBODY INVOLVED. 20 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Types of limitations experienced General limitations in emergency-rescue and clinical practices Lack of appreciation Generally, appreciation of emergency-rescue and clinical practitioners’ work is too low and radically weakening. In the communication of patients and their families with practitioners, signs of sincere gratitude for received assistance are becoming rare, while overt arrogance is becoming ever more common (e.g. a rude stressing of the personnel’s public duties or threatening where the clinical itinerary differs from the receiver’s projections; see also Aggressive Roma behaviour). In contrast to some private and especially to most state-owned companies, treatment and appreciation of less qualified personnel by their superior colleagues and management is supportive only in selected private ones (e.g. nurses in peripheral state-owned hospitals are commonly treated with blunt disrespect). Salaries of lower qualification professions, such as nurses or emergency-rescue drivers, do not provide a decent living, pressuring the personnel into accepting unbearable amounts of overtime and/or into working additional jobs. Appreciation of clinical practitioners’ work is too low and radically weakening Workload beyond the scope of the profession A substantial and growing proportion of emergency-rescue and clinical practitioners’ work – majorities in the case of emergency-rescue teams and nurses in selected wards – deals with issues beyond the scope of the profession. Emergency-rescue teams carry out too much work beyond the treatment of urgencies, hospital nurses beyond assistance with patients’ needs related to clinical treatment, internal medicine wards beyond the treatment of undiagnosed conditions with unassigned therapies, etc. The character of inadequate workloads approximates psychological counselling or welfare services: taking care of anxieties, recurring psychosomatic states, crises of neglected chronic conditions (typically of non-Roma elderly people) and/or taking care of patients’ varied socioeconomic issues such as the unaffordability of medications, clothes or sanitary accessories, lack of transportation means, demands for medical documentation supporting welfare allowance claims (mostly on behalf of segregated Roma of productive age groups, see also Counselling and welfare workload beyond scope of profession). Andrej Belák A substantial and growing proportion of emergency-rescue and clinical practitioners’ work deals with issues beyond the scope of the profession 21
    • Insufficient capacities Clinical practices are chronically and increasingly understaffed and underfinanced at all levels Clinical practices are chronically and increasingly understaffed and underfinanced at all levels. Unless intrinsically lucrative, departments in peripheral hospitals lack physicians (especially experienced ones), while their assistants typically serve a great many patients and work hours far above the quotas permitted by law (e.g. nurses in obstetrics- and paediatric wards). The low and ever decreasing number of personnel is still usually combined with insufficient quality and capacities of clinical premises, ranging from physicians sharing worn out and barely functional surgery accessories to acute unavailability of patient beds in hospital wards. Older generations of physicians are experiencing a steadily decreasing trend in amount of effort performed on the jobs per capita by their younger colleagues (see also Lack of solidarity among practitioners). Lack of solidarity among clinical practitioners Standards of interpersonal communication and cooperation among clinical practitioners remain very low and are worsening With the exception of selected instances (e.g. smaller privately owned practices in lucrative locations and in specialised areas), the standards of interpersonal communication and cooperation among various clinical professions and departments typically continue to remain very low and keep worsening. Hostility (ignorance, patronizing, verbal abuse, etc.) and lack of loyalty (from calumny to avoidance of colleagues’ patients in need) continue to be typical for the working ambience in most clinical practices. In addition, older generations of practitioners consider the understanding and attitudes of their younger colleagues regarding clinical occupations as increasingly opportunistic. Growing general public ignorance regarding health Patients’ confidence is growing, while their knowledge of health-related issues becomes more fragmentary and confused 22 While most patients’ confidence in and demand for particular clinical treatments continually grows, by biomedical standards their actual knowledge of health-related issues is becoming ever more fragmentary and confused. Emergency-rescue and clinical practitioners are being increasingly pushed (see also Lack of appreciation) toward procedures without clinical indications, such as the prescription of antibiotics for children or mood altering drugs. At the same time, their recommendations are not being followed where serious clinical indications exist. The latter is  especially the case with chronic diseases. Here, patients’ compliance ends with the intake of medicaments and the undergoing of surgical procedures, while preventative measures (e.g. dietary or physical activity recommendations) are only adhered to highly selectively or get ignored completely. Health-system limitations of Roma health in Slovakia: A qualitative study
    • Crisis of confidence in own expertise Many clinical practitioners are experiencing growing doubts about the validity of their own expertise. Facing intensifying opposition from their patients (see also Growing general public ignorance), increasing direct pressures from marketing (e.g. incentives from pharmaceutical companies) and amassing expert opinion retractions and clashes (e.g. in medical journals), general practitioners and paediatricians especially are finding it ever more difficult to decide about particular matters of clinical concern (e.g. regarding dietary recommendations in general practitioner practices), to weigh their own clinical experience adequately (e.g. where their own experience does not match general descriptions), and/or to not question the validity of all of biomedical knowledge as such (e.g. when compared with the pragmatic common sense holism of various alternative or folk medicines). Clinical practitioners experience growing doubts about the validity of their own expertise Differential negative effects of general limitations in emergency-rescue and clinical practices on Roma health »» he low quality of emergency-rescue and clinical services – especially at the T level of practitioners’ communication with patients – might be contributing to existing Roma prejudices about non-Roma, supporting and deepening existing Roma self-segregation practices (including aspects of existing Roma non-participation in the health system; see Roma-specific limitations). The low quality of emergency-rescue and clinical services might be deepening existing Roma self-segregation practices »» ue to their partial confounding with related Roma-specific limitations (e.g. D Lack of appreciation, Workload beyond scopes of profession), the above limitations identified here as general are likely to be more serious and apply with more effect in areas with a higher proportion of segregated Roma patients. General limitations are likely to be more serious in areas with a higher proportion of segregated Roma Andrej Belák 23
    • Roma-specific limitations in emergency-rescue and clinical practices Poor functionality of emergency-rescue and clinical standards Standard clinical procedures prove to be significantly less functional with respect to the majority of segregated Roma Both written and implicit standard emergency-rescue and clinical procedures working for both non-Roma and non-segregated Roma patients consistently prove to be significantly less functional with respect to the majority of segregated Roma. Facing almost exclusively patients from this Roma subgroup (understood loosely as Roma living in variously segregated rural or urban enclaves), upon adhering but to such standard procedures (more frequently on the part of practitioners with short-term experience, high level of prejudices or those simply less willing to violate any official rules for other personal reasons), emergency-rescue and clinical practitioners often find themselves incapable of eliciting useful anamneses or securing even the most basic necessary patient cooperation in particular diagnostic, therapeutic and/or administrative tasks of their respective jobs. The clinical significance of such difficulties ranges from constant rather formal complications (e.g. the incapacity to understand and sign an informed consent) to frequent unnecessary chronic damage to health, including preliminary deaths (such as in cases of sudden patient withdrawals from life-saving therapeutic plans or of nameless new-borns being left behind in hospitals by their adolescent mothers and absent fathers). Emergency-rescue and clinical practitioners partially transcending such difficulties (most practitioners at least in some respects on a daily basis) are only able to do so based on a combination of long-term personal experience with this group of patients and the willingness to systematically assign extra time and make the extra effort on their behalf (such as undergoing an officially unacknowledged, unassisted and uncompensated extra trial and error learning process; switching between various modes of feeling, thinking and communication, including different moral priorities, formal rules, body and spoken languages, genres of humour; assisting patients with their basic hygienic, socioeconomic, administrative and time-management incapacities; etc.). Aggressive Roma-specific behaviour A routine of Roma-specific aggressive behaviour is steadily intensifying 24 A routine (daily in obstetrics and paediatric hospital wards) of Roma-specific aggressive behaviour, typically involving middle-aged and teen-aged segregated Roma of mid- to high socioeconomic milieus (as estimated by supposed Roma preferences), is steadily intensifying. Apart from hardly ever involving non-Roma, compared with the growing arrogance experienced from non-Roma patients (see Lack of appreciation), such behaviour is both much more common and specific in its forms. The specific forms include: extreme verbal abuse (including allusions to sexual perversity and/or to relatives); provocative allegations mimicking and mocking idealist evocations and practices regarding social justice (unfair allegations of racism, claiming misuse of peoples’ taxes, inappropriate stressing of professional duties of the personnel, unjustified threatening with legal authorities or media, etc.); blackmailing via demonstrative self-harm (e.g. mothers banging their heads onto walls in order to achieve personnel violations of ward-rules), direct physical attacks (shouting, slaps, pushing, spitting, equipment damage); etc. Following asymmetries in authority and physical involvement, most Roma-specific arrogance is aimed at and dealt with by professionals of lower qualifications rather than physicians (i.e. clinical assistants, nurses, etc.). In the experience of emergency-rescue Health-system limitations of Roma health in Slovakia: A qualitative study
    • personnel, most cases of such behaviour concentrate around regular peaks of Roma collective conflicts related to welfare payment dates and usually involve alcohol intoxication. In the experience of nursing staff in obstetrics and paediatric wards, such behaviour also escalates through collective hysteria, yet occurs constantly and does not involve intoxication as often. Counselling and welfare workload beyond the scope of the profession In most emergency-rescue and some clinical operations (e.g. in paediatric and obstetrics hospital wards), a disproportionately large share of a substantial and growing workload beyond the scope of the concerned professions involves Roma (see Workload beyond scope of profession for primary explication). Work of this kind performed by emergency-rescue teams most often deals with social and economic issues of teenage and productive-age segregated Roma, such as the resolution of escalating fights within settlements (usually assisted by police), the prestige deficits of individuals (increasing via recruitment of non-Roma), the lack of affordability of medications, lack of transportation means, demand for medical documentation supporting welfare allowance claims, etc. Most emergency-rescue teams also pay ridiculously regular visits (e.g. hundreds per year) to elderly Roma individuals (here often not segregated) suffering from anxieties, recurring psychosomatic states, crises of neglected chronic conditions, etc. Within hospital wards, in addition to all of the above-mentioned issues, practitioners constantly deal with the consequences of recurrent child neglect (e.g. malnutrition, dehydration, bedsores, infant injuries, etc.); of recurrent neglect of personal hygiene (e.g. parasites, skin conditions); of the unaffordability of food, clothes and/or sanitary accessories; and similar (all usually on behalf of the poorest segregated Roma and/or their children). Apart from the high disproportion of Roma among the beneficiaries of such a workload, its specificity as experienced consists mainly in an inappropriately active and implied subscription to it by Roma patients: non-Roma patients in analogous situations typically exhibit much less related practical knowledge and self-confidence, better fitting the ”helping-the-victim” character of the situation. A disproportionately large share of workload beyond the scope of the concerned professions involves Roma Low hygienic standards within segregated Roma settlements Both personal and communal hygienic standards within segregated Roma settlements are too low. Compared with absolute majorities of non-Roma, non-segregated Roma and better-off segregated Roma patients, worse-off segregated Roma patients and their families approaching emergency-rescues and clinics often exhibit the consequences of long-term neglect of personal hygiene too appalling for the personnel to deal with (parasites, filthy clothing and bodies, unbearable scents). Sanitary equipment in hospital wards often suffer on one hand from patients’ and patient family members’ ignorance regarding its proper use (e.g. frequent damage, unnecessary contamination, etc.) and on the other from excessive use of it by others (e.g. whole families often try to take the rare opportunity for taking shower upon visiting their relatives, frequent thefts of accessories, etc.). Missing and/or contaminated roads and shelters without any sanitary infrastructure within the segregated settlements themselves increase the risk of contamination in clinical operations (e.g. emergency-rescue vehicles are contaminated with faeces, emergency-rescue clinical procedures often need to be carried out within filthy households). Andrej Belák Hygienic standards within segregated Roma settlements are too low 25
    • Truly racist practices Cases of intentional harm to patients based purely on them being identified as Roma do occur 26 Cases of intentional harm being done to patients by emergency-rescue and clinical personnel based purely on the former being identified as Roma (i.e. without taking into account their actual behaviour) do occur. Such truly racist behaviour (e. g. the unwillingness to treat Roma patients of some general practitioners, the unwillingness of some clinical personnel to enter Roma households, derogatory communication with Roma patients, etc.), however, typically comes from psychologically troubled practitioners and is nowadays considered as unacceptable and opposed by both their colleagues and the Roma involved themselves. The exact range of these kinds of racist practices is thus hard to assess. Except for possible rare extremes (such as consistent harm being carried out covertly), it most likely amounts at most to particular clinical practitioners and operations being consistently avoided by Roma. Much more common or constant (more frequent on the part of practitioners with short-term experience, a high level of prejudices and/or paradoxically of those less willing to violate official rules for other personal reasons) are cases of lowering the quality of service specifically towards segregated Roma patients based on previous frustrating experience with them or other Roma (not necessarily personal). The existing tendency to such lowering of quality is inappropriate, yet it is forced by constant failures in resolving clinical situations through standard fair means (see Poor functionality of clinical standards), typically restricted to the quality of the personnel’s communication (verbal abuse, shouting, threatening) and is not exclusive to only Roma patients under analogous circumstances. As such, it should be understood as a defensive (defensively racist at most) rather than a truly racist practice (e.g. as poor attempts at resolving situations by other means or a poor way of letting out one’s frustration for the moment). Health-system limitations of Roma health in Slovakia: A qualitative study
    • Differential negative effects of Roma-specific limitations in emergency-rescue and clinical practices on Roma health »» The lower quality and efficacy of emergency-rescue and clinical services specifically toward particular Roma subgroups are disproportionately harming their health directly. Such direct negative effects range from imminent psychosomatic harm from the substandard quality of the communication from personnel to unnecessary chronic conditions, including preliminary deaths, resulting from particular non-functionalities of clinical standards; see Truly racist practices, Poor functionality of clinical standards. »» Likely Roma awareness of the lower quality of emergency-rescue and clinical services specifically against them might contribute to existing Roma prejudices about non-Roma, supporting and deepening existing Roma self-segregation practices (including aspects of existing Roma non-participation in the health system). »» on-Roma awareness of existing Roma incompatibility with emergencyN -rescue and clinical standards (e.g. non-Roma patients’ complaints about most of the above specifics of Roma patients are common; see also Aggressive Roma behaviour, Low hygienic standards, Counselling and welfare workload) contributes to existing non-Roma prejudices about Roma, supporting and deepening existing non-Roma marginalisation of Roma (including aspects of existing non-inclusion of Roma within the health system). »» he presence of an officially unacknowledged and unresolved split of T emergency-rescue and clinical practices (see Poor functionality of clinical standards), is the basis for additional unnecessary conflicts among emergency-rescue and clinical practitioners, further lowering the quality of their service (see Lack of solidarity among practitioners). »» here present, Roma-specific limitations might be enhancing the serioW usness of particular general limitations and their effects (see Differential negative effects of general limitations in clinical practices). Andrej Belák The lower quality and efficacy of clinical services specifically toward Roma are disproportionately harming their health directly Roma awareness of the lower quality of clinical services specifically against them might be deepening existing Roma self-segregation practices Non-Roma awareness of Roma incompatibility with emergency-rescue and clinical standards supports the existing non-Roma marginalisation of Roma The presence of an unresolved split in emergency-rescue and clinical practices is the basis for conflicts among practitioners, further lowering the quality of their service The presence of Roma-specific limitations might be enhancing some general limitations and their effects 27
    • General limitations in population health research, surveillance and intervention Lack of experience in research Population health researchers are too inexperienced and isolated to make beneficial use of available funds and talents In the country, too many population health researchers are too inexperienced and isolated to make beneficial use of available funds and talents. When compared with scientific production in the West – especially in areas concerning the social aspects of health – low ethical, efficacy, methodological, and utility standards prevent most local research networks from sensitively and efficiently producing reliable and usable outcomes (local studies still typically do not account for pitfalls long-known of abroad), from successfully competing for necessary international resources (given that domestic funding is continually diminishing), as well as from training new scientists with such abilities for the future (deficiencies keep being reproduced where young scientists do not enter international programmes). State public health subordination to politico-economic regimes Excessive subordination of state public health to politico-economical regimes compromises its organisational stability and expert content 28 State public health practice is subordinated to alternating politico-economical regimes to such a substantial extent that both its organisational stability and its very expert content are compromised. Ever since the end of the Communist era, operations of the Slovak public health authority have suffered from constant economically, politically and ideologically reasoned organisational adjustments, including reductions in funding, capacities and competencies. As a result, state public health experts operate more and more as mere executive officers rather than as authorities responsible for proposals and protection of the setup of the state public health practice. They lose on one hand control over organisational security of their operations (e.g. externally imposed headcounts, administration principles and budget cuts), and on the other the means for updating their practice with state-of-the-art expert knowledge (i.e. especially where recommendations are apparently incompatible with the state politico-economical ideology of the day). For example, an absolute majority of related state resources and effort are focused on monitoring of and intervention in only the physically most proximate factors (such as the quality of drinking water), while more distal determinants of health (such as structural inequalities) remain untouched and unapproachable – despite their being more recently pinpointed as being at least equally important by international public health experts. Continuing substitution of state public health authorities by spontaneous private efforts (such as entrepreneur or NGO activities) has so far proven favourable only in relatively limited respects (e.g. overall improvement of sanitary conditions in hospitality industry or local trials of community health fieldwork within segregated Roma settlements). Spontaneous and more substantial involvement of private investors does not seem likely in public health areas where there are no profits to be made (i.e. especially where the final recipients are poor). The budgets, expertise and legal status of the involved NGOs do not provide for the necessary long-term management of such complex areas either. Health-system limitations of Roma health in Slovakia: A qualitative study
    • Differential negative effects of general limitations in population health research, surveillance and intervention on Roma health »» nderdeveloped population research on the social determinants of health U makes it impossible to understand and appropriately address the makeup and sources of steep and enduring Roma health disparities (thus contributing further to the differential deterioration of Roma health). »» hrough the absence of social determinants of health from its practice, the T present organisational setup of state public health authorities makes it impossible to monitor, intervene or supervise specifically on behalf of Roma groups as such – Roma health disparities are kept officially invisible and unapproachable as a public health issue. The lack of potential profits makes more substantial involvement of private investors unlikely. »» nappropriate outcomes of poor research and the absence of appropriate I monitoring, intervention and supervision regarding Roma population health might support existing Roma prejudices about non-Roma and existing non-Roma prejudices about Roma, as well as enlarge the existing political burden of similar and other Roma-related agendas (see Escalated political connotations of Roma-related work). Andrej Belák Underdeveloped population research on the social determinants of health makes it impossible to address Roma health disparity appropriately The present organisational setup of state public health authorities maintains Roma health disparities as officially invisible and unapproachable as a public health issue Poor Roma-related population research, monitoring, intervention and supervision outcomes might deepen both Roma self-segregation and non-Roma marginalisation of Roma 29
    • Roma-specific limitations in population health research, surveillance and intervention Poor functionality of population standards Standard notions and methods of population health research, surveillance and intervention prove to be less functional with respect to segregated Roma When applied to segregated Central and East-European Roma, standard notions and methods used within population health research, surveillance and intervention – such as ”ethnic minority”, “nation” or “marginalisation”, and self-reported health surveys, life-statistics or monitoring via clinical databases – often prove significantly less functional. Attempts at addressing arbitrary Roma subpopulations anticipating homogeneity, accessibility, cooperativeness and historical orientations common for other sedentary populations in the region typically fail in all aspects: by underestimating their greater internal variability (e.g. underestimating the extent of isolation among Roma), endorsing naïve data-acquisition plans (e.g. underestimating local social desirability of bluffing), constructing invalid primary data (e.g. overestimating the local ability to understand questionnaires), reifying and relying on reified statistical artefacts (e.g. correlations confounding distinct specific causal pathways and preferences within places), etc. Escalated political connotations of Roma-related work Extreme public polarisation regarding Roma makes addressing Roma-related issues exceptionally difficult 30 Regarding Roma in general, the country’s public is extremely polarised; this makes addressing any Roma-related issues – including health-status themes – exceptionally difficult. Turmoil and devoted opposition groups exist in and among various parts of the public, activist groups, political representation, the media, scientific communities, the Roma themselves, etc., and they are ready to pose and endorse an overwhelming array of arguments both for and against all: the use of public resources for affirmative action, approaching Roma as a cultural rather than a mere socio-economically marginalised group, designing activities with or without participation of Roma political representatives, the moral and political right to live off of Roma-related issues being or not being Roma, the intrinsic danger of ethnically classified data collection and publication, feasibility of any progress in Roma affairs given the long history of failures, etc. Health-system limitations of Roma health in Slovakia: A qualitative study
    • Differential negative effects of Roma-specific limitations in population health research, surveillance and intervention on Roma health »» The use of inappropriate notions and methods within population health research, surveillance and intervention designs might be harming the health specifically of Roma directly, e.g. by introducing systematic bias into estimates of clinical significance in their case. »» Inappropriate outcomes of poor research and the absence of appropriate monitoring, intervention and supervision regarding Roma population health might support existing Roma prejudices about non-Roma, existing non-Roma prejudices about Roma and further enlarge the existing political overload of similar and other Roma-related agendas »» The political overload of Roma-related issues might demotivate experts from entering or continuing efforts addressing Roma health disparities (thus contributing further to the differential deterioration of Roma health). Andrej Belák The use of inappropriate notions and methods might be harming the health of Roma directly Poor Roma-related population research, monitoring, intervention and supervision outcomes might be deepening both Roma self-segregation and non-Roma marginalisation of Roma The political overload of Roma-related issues demotivates expert efforts addressing Roma health disparities 31
    • Sources of limitations experienced General limitations in emergency-rescue and clinical practices Lack of appreciation »» istorical patient emancipation and/or retaliation (During the Communist era, H behaviour of clinical practitioners toward patients was traditionally rather arrogant and/because it used to be hard for patients to hold them accountable. With subsequent gain in their agency within clinical settings, many patients began actively to resist such treatment – or even retaliate for it – in an analogous style.) »» eneral loss of solidarity and an increase in competitiveness among people G »» ormal education is generally over-valued; informal experience, manual labour F and lower qualification efforts are devalued »» tradition of arrogance among physicians (exercised toward less qualified A personnel) »» mployees do not oppose inappropriate treatment by their superiors directly E »» mployees do not report inappropriate treatment by their superiors to higher E management »» ack of interest of the state in peripheral hospitals L »» he region is poor historically T »» ealth care as a whole is underfinanced by the government H »» he financial crisis requires owners, employers and/or the government to save T money »» nion strikes are not a viable pay negotiation option for nurses as mothers U »» onfidentiality of salaries enhances speculation, envy, and discontent among C personnel »» ommercial media focus on clinical failures and cover them superficially and C unfairly (e.g. supposed victim-centred reporting and no recalls of false accusations) »» High concentration of Roma in the area 32 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Workload beyond the scope of the profession »» he emergency-rescue network is too dense (since 2006, following implemenT tation of EU requirements) »» mergency-rescue intervention is free E »» o (applicable) charges or fines are in place for cases of emergency-rescue N being used for non-urgent cases or intended misuses »» mergency-rescue dispatchers’ options have been narrowed (There are fewer E types of transportation available, more personal responsibility and missing guidelines for differential diagnostics, loss of direct knowledge of patients’ medical histories in the area due to centralization of dispatching, etc.) »» eneral public ignorance regarding urgent health issues has grown (also G thanks to media campaigns following implementation of EU requirements in 2006) »» ncreasing medicalization of life I »» People are able to call an clinics from anywhere since the introduction of mobile phones »» o options available for clinic owners and management with respect to chronic N overuse other than organising psychological counselling for their employees »» Insurance companies do not care about the absolute economic loss from chronic over-use of emergency-rescue services, because it is the cheapest option relatively (The only other available option of hospitalising the same patients is much more expensive and emergency-rescue operations have to be paid a flat-rate, except for negligible extra distance top-ups.) »» o legislature in place enabling insurance and/or emergency-rescue compaN nies to prevent chronic overuse of emergency-rescue services legally »» tatistics regarding inadequate use of clinical services are missing and not S required by owners / the state (e.g. statistical evidence of efficacy of service is not required in state run public competitions for emergency-rescue licenses); supports corruption suspicions »» oo little time for communication with the patients in hospitals and general T practitioner’s operations (e.g. radically shortened in-patient periods leave no room for educating the patients with respect to their conditions) »» sychological counselling, social welfare and/or social medicine services are P underdeveloped, redirecting too many people toward clinical practice »» he social and economic situation in the region has worsened T »» he traditional family is disintegrating (e.g. ever more elderly people live aloT ne, abandoned by their descendants) »» he workload content (shift) is appropriate, but clinical practitioners are not T being (re)educated and (re)trained appropriately for what their jobs actually require (e. g. in psychological counselling or about social welfare options) »» igh concentration of (segregated) Roma in the area H Andrej Belák 33
    • Insufficient capacities »» he region is poor historically T »» he financial crisis requires owners, employers and/or the government to save T money »» nion strikes are not a viable pay negotiation option for nurses as mothers U »» ealth care as a whole is underfinanced by the government H »» wners and managers lack interest in and/or under existing the clinical signifiO cance of their decisions; nowadays, most of them lack any clinical experience; supports suspicions of corruption »» eedback regarding organisational issues from practitioners to management F is not being taken seriously »» wners and management place short-term profit above long-term stability O and/or people’s health; supports suspicions of corruption »» wners and their management are not being held accountable for long-term O planning by the state; supports suspicions of corruption »» pecialisation is disappearing from nursing education S »» edical degrees and/or licenses are being granted to individuals incapable M of-/unwilling to take up the vocational aspects of their respective professions »» eneral loss of solidarity and increase in competitiveness among people G »» ncentive-based organisation of clinical practice supports inappropriate motiI vations 34 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Lack of solidarity among practitioners »» eneral loss of solidarity and increase in competitiveness among people G »» tradition of arrogance among physicians A »» ractitioners do not oppose inappropriate behaviour directly P »» ractitioners do not report inappropriate behaviour to management P »» anagement of state-owned operations lack the skills and/or interest in getM ting rid of unprofessional behaviour among their employees »» anagement of state-owned operations lack the means for getting rid of unM professional behaviour among their employees, given the latter are under-paid »» edical degrees and/or licenses are being granted to individuals incapable M of-/unwilling to take up the vocational aspects of their respective professions »» ncentive-based organisation of clinical practice supports inappropriate motiI vations Growing general public ignorance regarding health »» oor public health education P »» Too little time for communication with the patients (e.g. radically shortened in-patient periods leave no room for educating the patients with respect to their conditions) »» ncreasing self-confidence of patients regarding their knowledge of health I issues as well as in communication with professionals »» ncreasing medicalization of life I »» ncreasing commodification of health-status parameters I »» ooming alternative approaches to health B »» ncreasing consumerism I »» rowing pressures on public from food and pharmaceutical marketing G »» nfluence of the Internet I »» massing of controversies regarding clinical expertise A Crisis of confidence in own expertise »» ncreasing opposition and pressures from patients and marketing (especially I pharmaceutical companies and makers of medical devices) »» ack of guidance and practical knowledge regarding evidence-based medicine L (from medical training and/or respective professional associations) »» ack of guidance and practical knowledge regarding proper evaluation of own L clinical experience (from medical training and/or respective professional associations) »» massing of controversies regarding clinical expertise A Andrej Belák 35
    • Roma-specific limitations in emergency-rescue and clinical practices Poor functionality of clinical standards »» ereditary / acquired (mostly conflated) Roma mental incapacities to achieve H and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.) »» oma disinterest in achieving or contempt for the non-Roma way of life (valuR ing of rational order and security based on long-term planning including with respect to health) »» pportunist Roma culture / Roma survival strategy O »» oma fear of non-Roma outside of Roma settlements R »» oma lack opportunities (infrastructural, educational, subsistence, etc.) to R achieve non-Roma standards due to marginalisation by non-Roma and/or due to Roma self-exclusion and/or due to usury flourishing within segregated settlements »» ack of fieldwork and edification being done in segregated Roma settlements L »» on-Roma lack knowledge regarding / under existing Roma life N »» issing / weak repression in place against Roma norms within segregated M settlements »» ocial welfare is too generous, supporting Roma passivity S »» oma lack purpose in life without the opportunity to work / to own land R »» linical education, training and practice do not reflect the practical need for C additional / more specific working standards »» etter functioning standards widely in use are not being officially acknowledB ged and appropriately compensated (Superiors tend to turn a blind eye, while colleagues who are themselves not involved tend rather to discourage on-going extra efforts.) »» esting and practicing of better functioning standards is not controlled legally T and thus is risky (Superiors turn a blind eye and self-made behavioural models of Roma specifics are being tested and imposed wilfully outside any formal records.) 36 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Aggressive Roma behaviour »» oma opportunist culture / Roma survival strategy R »» oma disinterest in achieving or contempt for the non-Roma way of life (valuR ing of rational order and security based on long-term planning) »» oma fear of non-Roma outside Roma settlements R »» ereditary / acquired (mostly conflated) Roma mental incapacities (e.g. low H intelligence, chronic impatience, hysterical tendencies, touchiness, etc.) »» ncreasing isolation of younger Roma teenagers from non-Roma due to I growing lack of opportunities; diminishing Roma knowledge of non-Roma means and manners »» rowing confidence of younger Roma (e.g. based on experiences from visiting G Western countries or following role models such as emerging Roma rappers) »» oma retaliation for a history of racism on the part of younger Roma (e.g. R based on experiences from visiting Western countries or following role models such as emerging Roma rappers) »» eaction to lower qualification personnel decreasing the quality of service R Counselling and welfare workload beyond scope of profession »» n addition to sources for Workload beyond the scope of the profession: I »» ereditary / acquired (mostly conflated) Roma mental incapacities to achieve H and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.) »» Roma disinterest in achieving or contempt for the non-Roma way of life (valuing of rational order and security based on long-term planning including with respect to health) »» pportunist Roma culture / Roma survival strategy O »» oma lack opportunities (infrastructural, educational, subsistence, etc.) to R achieve non-Roma standards due to marginalisation by non-Roma and/or due to Roma self-exclusion and/or due to usury flourishing within segregated settlements »» ack of fieldwork and edification being done in segregated Roma settlements L »» issing / weak repression in place against Roma norms within segregated M settlements »» ocial welfare is too generous, supporting Roma passivity S »» oma lack a purpose in life without the opportunity to work / to own land R »» ooperation with / work of social welfare authorities is unsatisfactory (e.g. C social welfare officers refuse to remove constantly neglected children from families) Andrej Belák 37
    • Low hygienic standards within segregated Roma settlements »» ereditary / acquired (mostly conflated) Roma mental incapacities to achieve H and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.) »» oma disinterest in achieving- or contempt for the non-Roma way of life (valuR ing of rational order and security based on long-term planning including with respect to health) »» pportunist Roma culture / Roma survival strategy O »» oma lack opportunities (infrastructural, educational, subsistence, etc.) to R achieve non-Roma standards due to marginalisation by non-Roma and/or due to Roma self-exclusion and/or due to usury flourishing within segregated settlements »» ack of fieldwork and edification being done in segregated Roma settlements L »» issing / weak repression in place against Roma norms within segregated M settlements »» ack of non-Roma fieldwork and edification in segregated Roma settlements L »» tate / municipal / public health / social welfare authorities’ neglect of Roma S settlements Truly racist practices »» mployment / non-reporting of psychologically troubled individuals or collectiE ves by superiors / colleagues, respectively »» oor functionality of clinical standards with respect to segregated Roma P »» alaries of lower qualification personnel approximate social welfare S allowances »» navailability of psychological counselling for (lower qualification) personnel U »» nfair activist interpretations / media coverage of defensive racist practices U increases practitioners’ loyalty with truly racist perpetrators »» bundance of public prejudices regarding Roma A 38 Health-system limitations of Roma health in Slovakia: A qualitative study
    • General limitations in population health research, surveillance and intervention Lack of experience in research »» Political history of Slovak science under Communist rule (Science incompatible with Marxist historical materialism used to be programmatically curbed by state authorities.) »» nertial loyalty within low quality research networks I »» oo few scientists with experience from abroad, yet T Public health’s subordination to politico-economical regimes »» ack of understanding, both among the public and among specific decisionL -makers, regarding the inherent incapability of public health to demonstrate short-term effects (presenting a preventative approach) »» ecreasing understanding, both among the public and among specific deciD sion-makers, regarding the key role public health has played in achieving and continues to play in maintaining the existing population health-status »» ack of understanding, both among the public and among specific decisionL -makers, regarding the key role of social determinants of health for improving health status and health-status justice. »» verestimation, both among the public and among specific decision-makers, O of the abilities of the market and of spontaneous civic activities (such as NGOs) regarding public health »» oyalty of many state public health experts regarding the diminishing of their L roles within state public health practice »» bundance of prejudices regarding Roma among state public health experts A and practitioners Andrej Belák 39
    • Roma specific limitations in population health research, surveillance and intervention Poor functionality of population standards »» n comparison to all other sedentary groups in the region, Roma populations I have always been occupying and adapting to niches avoided by the former – hence, the tools made by the former for their own purposes are likely to lack both uses in and understanding of the history of the latter »» ystematic evaluation of failures missing from practice S »» iomedical population research has traditionally been conducted on behalf B of non-Roma (considering Roma isolation a threat to public health) and/or on Roma (as an isolated population posing promising discoveries) rather than for Roma (incorporating target population needs) »» iomedical research ignores social scientific accounts of Roma specifics B »» onclusions from social scientific accounts of Roma specifics are not being C presented in a generally understandable language (e.g. excessive use of technical terminology and references to social scientific theories) and/or in forms accessible from within the existing capacities of biomedical professions (e.g. no time to read lengthy, thick descriptions) »» egregated Roma present an unattractive population for private health-system S services and investors (given their poverty) Escalated political connotations of Roma-related work »» here has been a long history of failing attempts to level average segregated T Roma standards with those of non-Roma populations »» ith Roma typically remaining mostly external to both such levelling attempts W as well as to discussions about their failures, the latter present arenas where any positions (including those most extreme) are easily maintained by participants without suffering any of the real consequences such positions might imply (e.g. various repressive or assimilative measures) »» bundance of prejudices regarding Roma A »» he involved parties ignore existing social scientific accounts of Roma specifics T »» onclusions from social scientific accounts of Roma specifics are not being C presented in generally understandable language (e.g. excessive use of technical terminology and references to social scientific theories) and/or in forms accessible from within most professions (e.g. no time to read lengthy, thick descriptions) 40 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Part 3. Recommendations “Our notions of ‘culture’, of ‘ethnic group’ or ‘people’ are so utterly rooted in the schemas derived from practices of nation states (which are, or at least strive to be, homogenous, neatly bounded entities) that Romany communities appear as an anomaly.” Andrej Belák 3 Michael Stewart (2011) 41
    • Part 3. Recommendations HOW MIGHT WHO MAKE USE OF THIS PUBLICATION WITHIN THEIR ACTUAL ASSIGNED COMPETENCIES? FIRST, THE INACCURATE NATURE OF BOTH THE STUDY METHODS AND THE EXPERIENCES IT HAS ATTEMPTED TO RECONSTRUCT NEED TO BE ACCOUNTED FOR. THE FOLLOWING RECOMMENDATIONS THUS BEGIN BY ADDRESSING ALL OWNERS OF HEALTH-SYSTEM OPERATIONS, PROPOSING TO THEM A GENERAL STRATEGY FOR LOCAL VERIFICATION AND IMPLEMENTATION OF WHAT THE STUDY CONSULTANTS WERE WILLING TO SHARE AND WHAT THIS STUDY MADE FROM IT. THEN, FOR BOTH PROFESSIONAL CONSIDERATION AND PUBLIC DISCUSSION, A NUMBER OF PRINCIPAL DILEMMAS ARE DESCRIBED THAT APPEAR TO BE HINDERING PARTICULAR HEALTH-SYSTEM ACTORS FROM RESOLVING SEVERAL OF THE IDENTIFIED LIMITATIONS THROUGH JOINT EFFORT BOTH WITHIN AND ACROSS THEIR OPERATIONS AND AREAS OF PRACTICE. REFERENCES TO RELATED SCIENTIFIC LITERATURE ARE INCLUDED WHERE PARTICULAR INTERPRETATIVE ASSERTIONS MIGHT NOT BE GENERALLY KNOWN OR ACCEPTED. WHERE ILLUSTRATIONS MIGHT HELP, SOME ADDITIONAL DETAILS ARE SHARED FROM THE STUDY FIELD DATA WHICH DID NOT MAKE IT INTO THE REPORT’S Findings. THESE RECOMMENDATIONS SHOULD CERTAINLY NOT BE FOLLOWED BLINDLY. THEY ARE INTENDED RATHER AS AN INSPIRATION FOR CONSTRUCTION OF RESOLUTIONS THAT MIGHT BETTER FIT PARTICULAR SETTINGS. 42 Health-system limitations of Roma health in Slovakia: A qualitative study
    • General strategy proposed for application of the findings 1) Assess the presence of the limitation experiences Owners of all health-system institutions are encouraged to review the types of limitations experienced listed in the study Findings. Then, the range to which particular types of limitation experiences occur within their particular operations should be assessed. For the attention of: Owners and managements of all health-system operations Do your employees really think they are facing such or similar limitations? What proportions of which employees think they face which limitations and to what negative effects? 2) Assess the presence of the limitations The presence of the actual particular limitations confirmed as experienced within particular operations needs to be assessed next. Do your employees really face the limitations they think they face? What proportions of which employees do face which limitations and to what negative effects? 3) Explain aspects of the limitations not confirmed Should some of the listed types of experienced limitations or some of their aspects not be found significant within particular operations, such findings – including their possible explanations – should be shared with both the general public and professional colleagues. Which of your employees only think they face which (aspects of) limitations that do not really exist and why? Which of the limitations do not exist within your operations and why? 4) Discuss options regarding remaining limitations with involved practitioners Available options regarding remaining limitations confirmed as real within particular operations need to be reviewed and discussed with involved practitioners. At  this stage, the overreaching dilemmas identified by this study are advised for review and inclusion into the discussions (Overreaching dilemmas for consideration). Who can do what to help remove, shift or compensate for which of the limitations employees face within your operations? 5) Decide upon, implement and evaluate options against existing limitations Options identified in the discussions should be decided upon, implemented and  evaluated. Outcomes of the evaluations carried out need to be shared with both the general public and professional colleagues. Who is going to make sure which remedial steps will be taken, including an evaluation of their effects? Andrej Belák 43
    • Overreaching dilemmas for consideration with respect to Roma health For the attention of: Owners and management of all health-system operations, the general public, state ministries, political representatives, health insurance companies, universities, NGOs, donors, patients’ advocate groups, and the media 44 A generalised or varied understanding of health equity? Health-status related circumstances in both urban and rural segregated Roma settlements in Slovakia are radically distant from those typical for other Roma and non-Roma inhabitants. According to fragmentary authentic indices (Belák 2005; Belák 2013), people living in such circumstances are likely to agree that the existing expert understandings of health are generally reasonable and worth following in both their broad formal and more constricted practiced versions (Beaglehole and Bonita 2004). They too, seem to value their own ”complete well-being”, and they, too, seem to consider increased bodily capacities to be a meaningful goal for everyone. Along with obvious deliberate Roma utilisations of health care, such and similar findings thus conform to the common impression (e.g. among NGO activists) that these people would also do everything just as everybody else to increase their health status – if they only had equal opportunities. Yet, drawing from identical ethnographic data, the very same segregated Roma simultaneously seem to consider and to refuse many such exactly equal opportunities as being principally too conflicting with their own understanding of a life worth living (Belák 2005; Belák 2013). This eventuality is congruent not only with most other methodologically analogous accounts of non-assimilated Roma from across Europe (Dion 2008; Gay Y Blasco 1999; Gmelch 1986; Okely 2011; Stewart 1997; Stewart 2004; Stewart 2011; Tesăr 2012; Van Cleemput, et al. 2007; Vivian and Dundes 2004; Williams 2003), but now – thanks to the presented study – it also seems to be reflected in the understanding of many health-system practitioners. Health-system limitations of Roma health in Slovakia: A qualitative study
    • In their experience, despite a full understanding of the consequences and the direct availability of equal options, segregated Roma often choose preservation of their everyday life circumstances over improvements in their health. In other words, equal opportunities might not be understood and availed of equally by segregated Roma based on radical differences in their identities (Dressler, et al. 2005; Frohlich, et al. 2001; Popay, et al. 1998; Whyte 2009). If this were indeed the case for substantial proportions of segregated Roma, the project of curbing Roma health-status disparities might eventually start facing the same seeming paradox faced by the interviewed practitioners. How should particular professionals in the health-system position themselves regarding such an eventuality? Should the endorsement of health-status improvements also continue via pressure on segregated Roma’s very understanding of the place of diseases within their lives (e.g. through ”nudging” them toward education, as most consultants within this research were prone to suggest)? In what respects? Based on what rights? Or should the project limit itself to searching for ways of helping all Roma improve their health status solely under the specific conditions some of them might prefer (as the latest WHO and CSDH recommendations suggest in stressing ”respect” toward vulnerable groups) (CSDH 2008; WHO 2013)? Even if the latter might mean a long-term or total acceptance of a more heterogeneous health-status reality (depending solely on availability of acceptable means)? If so, what tools are there for detection and reconstruction of eventual authentic Roma conditions (in contrast, e.g., to conditions imposed on them by previous marginalisation or other forms of violence)(Bourdieu 2000)? Should such tools become part of public health expertise (if so, then how?), or should individual consultation of existing social science research remain the way to go (even though this does not seem to be a practical enough option according to most consulted health-system practitioners)? Generalised or varied sets of standards for health-system practices? Regardless of exactly what health-equity projects will ultimately decide to aim at, it seems obvious that health-related circumstances in both rural and urban segregated Roma settlements will remain radically distant from what the existing health system is capable of efficiently supporting for at least another great number of years (e.g. guesses of the consulted practitioners ranged from decades to forever). Given the documented difficulties of the officially acknowledged, trained and valued generalised standards, and the documented lack of expert, legal and economic support for better functioning unofficial standards already in wide use, the question of whether the health system should not systematically acknowledge and incorporate the latter, too, might become legitimate. Should institutions comprising the health system start looking into ways of equipping its personnel and processes with additional tools, ones better capable of dealing with present specifics of segregated Roma? If so, what tools for what specifics? Plus, what about the possibility of such varied standards themselves preserving differences that are opposed in the long-term? What measures might prevent such inadvertent fixation of health inequities (Betancourt, et al. 2005; Kleinman and Benson 2006)? Should these issues become part of the public health agenda (if so, then how?), or should individual consultation of existing social science research remain the way to go (even though this does not seem to be a practical enough option according to most consulted health-system practitioners)? Andrej Belák 45
    • A project titled “Healthy communities” involving community health fieldworkers assigned specifically to segregated Roma settlements might present a great live example for the above-described dilemma (ACEC; http://www.acec.sk/). As part of the project, lay individuals directly from within segregated Roma settlements are being trained and financially compensated variously to assist the health system (including its underdeveloped health-equity agendas) directly in such places. Within this study, to a direct question regarding variegation of available services on behalf of segregated Roma (sometimes asked at the very end of the interviews), every one of all consulted health-system practitioners across professions offered a positive reply. When additionally asked about what kind of specific variegation of services might be appropriate, the majority of interviewees either recalled an analogous community health fieldwork service once operating during the Communist era or came up with an identical idea themselves. Most of the visited practitioners expressed spontaneous interest in obtaining contacts for community health fieldworkers being trained in the area of their service. As the project, now operating under governance of Platform for support of disadvantaged groups (http://www.ppzzs.sk/), has lately gained official support and funding directly from the Slovak government, perhaps a well-suited opportunity opens up to evaluate within its operations all of the above and further similar questions. 46 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Adjusting emergency-rescue and clinical practices to professional education and training or vice versa? According to most consulted emergency-rescue and clinical practitioners, the high concentration of segregated Roma in the area of their service seems radically to increase the proportion of the workload they consider inappropriate for their professions (e.g. involving too much psychological counselling and social welfare assistance). There was, however, principal disagreement among the consultants regarding the sources of and solutions to this problematic situation. Most viewed it as an unacceptable consequence of underdeveloped social medicine and/or social welfare services – i.e. as a problem lying principally outside their competencies. But others contemplated their own inappropriate expectations, insufficient education and training instead – i.e. implying or explicitly asserting that it is the content of their own clinical professions which should adjust to the specific needs arising in their geographical and specialisation areas. Thus, it seems timely to ask: should particular existing conflicts between the realities and the practitioners’ understandings of their jobs be resolved via adjusting clinical employment, education and training processes, or rather through adjusting Roma venues to clinical practices (e.g. through development of better functioning social medicine and social welfare)? By whom, how and in which respects? Fighting or healing racism? In the accounts of most consulted practitioners, common substandard treatment specifically of segregated Roma (mostly in the sense of substandard communication or avoidance) has been almost unanimously interpreted as morally unacceptable, but at the same time constantly forced upon staff by steadily worsening on-the-job circumstances (poor functionality of standards, capacity issues, aggressive behaviour of too many Roma patients, etc.). When approached from an inattentive, one-sidedly critical perspective (frequent mainly within activist- or media discourses approaching clinicians), such practices are allegedly too often confused with ”true racism” – a much less common form of substandard treatment based solely on the supposed Roma-affiliation of the victims and personal psychological trouble of the perpetrators. An analogous distinction and related confusion might be extrapolated to the level of practitioners’ spoken practice (e.g. instances of common superficial statements, such as the consistent use of ”Roma” when referring to unpopular specifics of solely small proportions of segregated Roma, might easily be pinpointed as evidence of practicing racist generalisations). Critiques conflated in this way were considered by the consulted practitioners as mere arrogant accusations. As such, these do not seem to be doing anyone much good: thanks to them, communication platforms necessary for addressing any kinds of racism appear to have been completely lost with many practitioners (e.g. one large central hospital declined participation in this study explicitly quoting a bad experience of this kind, and most of the other consultants were apparently expecting the same). Far from underestimating the inherent dangerousness of systematically substandard communication or inaccurate casual labelling, as well as from doubting historical achievements of radically critical discourses in the domain of so called “Roma affairs” (ERRC 2006; Zoon 2003), another dilemma might thus be formulated. Regarding racism, the present situation in the Slovak health system might perhaps be better suited for a more classic, cooperative and therapeutic approach (implying among other things literally psychotherapy for authentically racist individuals) rather than for a continuation of a zero-tolerance, uninstructive and overtly critical scrutiny (Allport 1979; Lévi-Strauss 1952; Phillips 2011). Andrej Belák 47
    • Expert or politico-economic control of public health issues? Strong relations between the poor health status of most Roma and the specific niches they occupy suggest that more systematic research, monitoring and interventions regarding social determinants are necessary, should any alterations become agreed upon as favourable by all parties involved (see Introduction). Yet, as poor people supposedly do not present good clients for most private entrepreneurs, most NGOs do not seem to possess sufficient capacities and legal status for appropriate long-term management of such complex issues, and state-employed public health experts seem to be continually losing their planning competencies to other politico-economic agents of the state, in Slovakia such a scenario seems rather unlikely. Another question worth public and professional discussions arises: should state expert health-system agencies, such as the Slovak public health authority, not be returned some of their programming competencies and capacities? Will there be any specific long-term assistance available to address Roma health disparity without such moves? Where will it come from? Again, the ACEC “Healthy Communities” project offers a good illustrative example. Although now after newly becoming part of a temporary contract with the state, it runs independently from both the country’s Ministry of Health and the Slovak public health authority – the state expert health system at present simply does not operate in such directions (the contract was signed with Ministry of the Interior). 48 Health-system limitations of Roma health in Slovakia: A qualitative study
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    • Zhrnutie Pomerne zlý zdravotný stav rómskej populácie na Slovensku sa radí medzi najväčšie, najstrmšie a najtrvalejšie vnútroštátne rozdiely v zdraví v Strednej a Východnej Európe. Predkladaná kvalitatívna štúdia skúmala ako a prečo by k takýmto a podobným nepomerom mohli v jednotlivých krajinách systematicky prispievať paradoxne aj samotné zdravotné systémy. Určená predovšetkým pre výskumníčky a výskumníkov zaoberajúcich sa obdobnými otázkami, prvá časť publikácie poskytuje prehľad základných údajov, obmedzení a výhod dizajnu samotnej štúdie. Druhú časť tvorí zhrnutie jej hlavných zistení, pozostávajúcich z typov, zdrojov a  možných špecifických negatívnych dopadov každodenných obmedzení v praxiach zdravotného systému, zostavených na základe skúseností praktičiek a praktikov slúžiacich Rómom na dennej báze. Publikáciu uzatvárajú odporúčania rôznym skupinám, ktoré štúdia identifikovala ako zainteresované alebo vhodné na zainteresovanie do budúcnosti. Zistenia zahŕňajú popisy, zdroje a možné negatívne dopady na zdravotný stav špecificky Rómov konkrétne nasledovných typov obmedzení (vo formuláciách rešpektujúcich jazyk konzultovaných praktikov a praktičiek): Všeobecné obmedzenia ambulantných a klinických praxí »» edostatočné ocenenie N »» racovná záťaž za hranicami náplne profesie P »» edostatočné kapacity N »» edostatok solidarity medzi praktikmi a praktičkami N »» túpajúca ignorancia verejnosti ohľadom zdravia S »» ríza dôvery vo vlastnú expertízu K Obmedzenia ambulantných a klinických praxí špecificky vo vzťahu k Rómom »» habá funkčnosť klinických štandardov C »» gresívne správanie Rómov A »» oskytovanie poradenstva a sociálnej podpory za hranicami náplne profesie P »» ízke hygienické štandardy v segregovaných rómskych osadách N »» kutočne rasistické praktiky S Všeobecné obmedzenia praxí v zdravotne-populačnom výskume, dozore a intervencii »» edostatok skúseností vo výskume N »» odriadenosť štátnych agend verejného zdravia politicko-ekonomickým režiP mom 52 Health-system limitations of Roma health in Slovakia: A qualitative study
    • Obmedzenia praxí v zdravotne-populačnom výskume, dozore a intervencii špecificky vo vzťahu k Rómom »» habá funkčnosť populačných štandardov C »» olitická preexponovanosť tém zahŕňajúcich Rómov P Odporúčania ponúkajú majiteľom a správcom prevádzok zdravotného systému 5-krokovú stratégiu pre overenie a použitie uvedených zistení a správu uzatvárajú 5 presahujúcimi dilemami ohľadom zdravotných nepomerov zahŕňajúcich Rómov určenými pre posúdenie profesionálmi i verejnosťou: »» šeobecné alebo rôznorodé chápanie rovnosti v zdraví? V »» šeobecné alebo rôznorodé štandardy pre praxe zdravotného systému? V »» rispôsobovať klinické praxe vzdelaniu a tréningu profesionálov alebo naopak? P »» oj s rasizmom alebo jeho liečba? B »» xpertná alebo politicko-ekonomická kontrola verejného zdravia? E Andrej Belák
    • “Health systems are important determinants of population health. Ensuring the voice of the most marginalised are heard in their design, implementation and review is a crucial success factor but seldom achieved. This study can be added to growing list of others which shine a light on how to move forward with strong possibility of success and for realising global commitments to universal coverage and equity of outcomes.” Chris Brown WHO European Office for Investment for Health and Development, Venice, Italy “Roma have been shown to be one of the major deprived groups within the European Union. Sound evidence on their health status, and on the best ways to improve this, is still very scarce albeit increasing. This study disentangles some of the difficulties in improving Roma health, by analysing both Roma and health system related determinants of a poor Roma access to care. I think the study calls for implementation and evaluation ofMgr.Lucia Bosáková, MSc. the proposed PhD. Ing. Mária Sarková, solutions. Large health Andrej Belak, gains can be reached here.“ Prof. S. A. Reijneveld University Medical Centre Groningen & University of Groningen, The Netherlands Andrej Belák, MSc, left his undergraduate studies in philosophy (University of Vienna & Charles University in Prague) for natural science, eventually earning a degree in biology (Department of Anthropology and Human Genetics, Charles University in Prague). Having along the way performed extensive ethnographic research focusing on the local understanding of health within a segregated Roma settlement in Slovakia, he has, however, remained interdisciplinary. Currently, he is a PhD candidate at the Department of General Anthropology at Charles University in Prague. Hoping to pay back some of his personal dues to both Roma and non-Roma consultants, his follow-up multi-sited fieldwork contemplates and tests additional possibilities for standard cooperation among medical anthropologists, epidemiologists and public health-practitioners in the region. In his view, bringing these disciplines together might facilitate a much needed more sensitive, more inclusive and (consequently) more effective expert practice targeting health-status disparities involving Roma. ISBN 978-80-971475-2-5