Conceptualización y evaluación de la gobernanza para la salud de la población gitana en España

Resumen

Conceptualization and Evaluation of Governance for Roma Health in Spai Introduction Roma health inequities in Europe and Spain as result of a secular discrimination. Despite being Europe’s largest ethnic minority—Spain is the Western European country with the highest national and foreign Roma population—Roma across the continent have worse health than that of the rest of population regardless their socioeconomic status. They suffer earlier mortality and lower life expectancy; worse hearing, visual and mental health; more chronic and infectious diseases; worse self-perception of health; more traffic accidents, and less healthy behaviors than non-Roma populations. Women have more unplanned and teenage pregnancies, abortions and sexually transmitted diseases, while children suffer more premature births, asthma, malnutrition, domestic accidents, obesity, worse oral health and lower vaccinations. This appalling situation comes from a secular and systemic discrimination—which especially affects women, children and foreign Roma—reflected in antigypsy discourses, racism within healthcare systems, higher school failure and unemployment levels, and housing segregation. The challenges of European and Spanish Roma health policies. Spain approved its first Roma Development Program in 1989 while the first European commitment was in 2005 with the Decade of Roma Inclusion—which Spain joined four years later. Since the unjust situation of the Roma persisted, the European Commission made it a priority under Europe 2020’s agenda—as did the World Health Organization’s Health 2020. Also, State Members were urged to develop National Roma Integration Strategies in the field of health to ensure coverage and access, impact the most vulnerable groups, and include professional Roma in programs by reinforcing policies, supporting authorities, and building stakeholder networks. These policies involve challenges that hinder their impact (e.g., the low commitment of politicians, the gap between planning and implementation, or the weak inclusion in local policies). Critical voices alert that these policies might be promoting assistance, depoliticizing the real causes of inequities and racializing health problems. Others state that these have ceded decision-making spaces to bureaucratic non-Roma actors and Roma participation has been tokenized, manipulated and even co-opted by unsuccessful representatives. Policies are also based on non-representative research which have made Roma inequities invisible and neglected, impeding policy design, implementation and evaluation. Addressing Roma health policy challenges by strengthening governance for health. Governance for health is proposed as the framework from which to develop the needed changes during the evaluation and redefinition of Roma health policies to ensure their impact. The Lancet–University of Oslo Commission on Global Governance for Health defines it as the processes aimed at assessing and overcoming the asymmetrical distribution of power and economic, intellectual, normative and political resources that negatively affect health. The values and perspective of community psychology can shed light to this process. From this approach, governance for Roma health demands (a) a new conceptualization of the problem in order to respond to its complexities; (b) new evaluation and accountability mechanisms; (c) the identification of strengths and limitations to make policies more just, equitable and efficient; and (d) power reorganization by including new actors and roles; This thesis aims to evaluate the implementation of the health branch of the National Roma Integration Strategy in Spain and other national commitments from the conceptual and methodological frameworks of governance for health. The following research objectives are proposed: 1. To develop a framework to assess and redefine policies that ensure governance for Roma health. 2. To design an assessment tool of governance for Roma health. 3. To identify good professional practices that ensure governance for Roma health at local level. 4. To redefine the role of stakeholders as capacity-builders of governance for Roma health. Results Results are presented following the objectives and their corresponding publications. The report ‘Implementation of the National Roma Integration Strategy and other national commitments in the field of health – Spain. A multi-stakeholder perspective report on 2005-2014 developments’ (Garcia-Ramirez, Escobar-Ballesta & Lizana, 2015) responds to the first objective aimed at developing a framework to assess and redefine Roma health policies from a wicked problem and a transformative policy change perspectives that relies on multistakeholder narratives and best available evidences. The paper ‘Taking stock of Roma health policies in Spain: lessons for health governance’ (Escobar-Ballesta, Garcia-Ramirez & De Freitas, 2018) responds to the objective of designing and implementing a tool—the Roma Health Integration Policy Index—to assess governance for Roma health by identifying policy strengths and weaknesses regarding entitlement, accessibility, responsiveness and capacity to achieve and sustain changes. The paper ‘Sexual and reproductive health in Roma women: the family planning programme of Polígono Sur in Seville (Spain)’ (Escobar-Ballesta, Garcia-Ramirez, Albar & Paloma, 2018) relates to the third objective of identifying good professional practices that neutralize the low impact of policies by adjusting programs and services, and ensuring governance for Roma health at local level. Lastly, the paper ‘The challenge of equity in health policies aimed at the Roma population in Spain’ (Garcia-Ramirez, Escobar-Ballesta, Lizana & Albar, 2018) responds to the objective of redefining the role of stakeholders as capacity-builders of governance for Roma health through our experience as community psychologists during the evaluation of the implementation of the National Roma Integration Strategy’s health branch, and the need for other stakeholders to embrace this role. Discussion and Conclusion From a wicked problem and transformative policy change perspective, this thesis has developed a framework and a tool to assess and redefine Roma health policies. Our results are consistent with other evaluations of the Decade of Roma Inclusion and the National Roma Integration Strategies, thus stating their limited impact in overcoming Roma health inequities. This has led to provide lessons from our experience to conceptualize effective, sensitive and just policies that ensure Roma health governance which might be useful in similar contexts. Governance for Roma health needs intersectional and intersectoral approaches as well as the inclusion of health-related priorities in other sectoral policies. Our study has proven the success of the intersectional approach by adapting policies to the multiple vulnerabilities of users (e.g., Roma, women, poor, in at-risk contexts, low educational level) rather than prioritizing one over the others. This approach implies an intersectoral work of effective collaboration between the health sector and other axes that determine health (e.g., education, housing, social services) so policies are planned considering their effect on Roma health. Governance for Roma health needs Roma transformative participation. Our study highlights the need for the real and effective participation of Roma, especially the most silenced ranks—to challenge the dominant discourses during policy design and implementation that have been frequently tokenized and lacking legitimate Roma representation. This participation can propel empowering settings in which the Roma exert direct influence at community and policy levels by prompting fairer, more sensitive and effective policies. Governance for Roma health needs new stakeholder roles. Our study has highlighted the role of community psychologists as capacity builders of governance for Roma health during the policy evaluation process. This role can be extended to other stakeholders who act as mediators, instigators and advocators of Roma health within their organizations by redefining policies, reallocating resources to ensure governance and dismantling institutional discrimination. Roma must become advocators of their own health within their communities and institutions, with power and opportunities to lead changes in the design, implementation and evaluation of policies that affect them. Governance for Roma health needs accountability mechanisms to ensure visibility, transparency and responsibility. Our study has highlighted the importance of using adjusted approaches and tools to assess Roma health policies that present challenges during their design and implementation. This allows identifying policy strengths and limitations in order to redefine them according to the needs of Roma and the context in which they are applied, as well as to strengthening evidence-base with good practices in policymaking. Evaluation should be emphasized at local levels through stakeholder coalitions that include Roma health advocators. This will allow ensuring transparency, accountability and co-responsibility throughout the governance process. Among the limitations, this study was only implemented in two Spanish autonomous regions and mainly focused on national Roma. Also, it serves to evaluate the causes of policy failure but does not evaluate particular cases. Our study on good practices focused on a well-known Roma health problem (i.e., sexual and reproductive health) rather than other important and neglected ones (e.g, vision and hearing health). Lastly, the study fails to ensure Roma’s real voices without relying on organizational intermediaries. In conclusion, this thesis has highlighted the need to strengthen governance for Roma health through transformative policy design and evaluation committed to the values of social justice, equity and human rights that facilitate Roma health, wellbeing, and thriving.