Conceptualización y evaluación de la gobernanza para la salud de la población gitana en España.
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i Conceptualización y Evaluación de la Gobernanza para la Salud de la Población Gitana en España Tesis presentada por Marta Escobar Ballesta para la obtención del Título de Doctora en la línea de investigación “Procesos psicosociales, cultura, diversidad y ciudadanía” del Programa de Doctorado en Psicología Universidad de Sevilla Septiembre, 2018
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iii Conceptualización y Evaluación de la Gobernanza para la Salud de la Población Gitana en España Tesis presentada por Marta Escobar Ballesta Tesis dirigida por Prof. Dr. Manuel García Ramírez (Dpto. Psicología Social, Universidad de Sevilla) Profa. Dra. Mª Jesús Albar Marín (Dpto. Enfermería, Universidad de Sevilla)
iv © 2018. Marta Escobar Ballesta. Todos los derechos reservados
v Agradecimientos Esta tesis se ha beneficiado del proyecto “Equi-Health: Fostering health provision for migrants, the Roma and other vulnerable groups” de la International Organization for Migrations gracias a una beca de 16 meses. También de la iniciativa “ADAPT: Adapting European Health Systems to Diversity” de la red COST European Cooperation in the Field of Scientific and Technical Research a través de dos Short Term Scientific Missions en el Department of Migration Health Programs de la Univeristy of Pécs y en el Instituto De Saúde Pública Da Universidade do Porto. Gracias al Prof. Dr. István Szilard, a la Dra. Claudia De Freitas, y a sus compañeros por acogerme y enseñarme otras realidades. En particular, gracias a Claudia, por tu ayuda y consejos. También gracias a Tona, por compartir los inicios de esta andadura, y a todos los profesionales que dedicaron su tiempo a participar en la tesis. Gracias a mis codirectores, el Prof. Dr. Manuel García Ramírez y la Profa. Dra. Mª Jesús Albar Marín, quienes son también compañeros, amigos y familia. Ambos me han acompañado en varias etapas de mi vida y ésta no habría sido posible sin su apoyo y paciencia infinita. Manolo, ahora agradezco que me hayas exigido el máximo. Gracias por confiar, por escuchar mis historias, por ofrecerme las tuyas y por re-narrar juntos otras. Me quedo con tu insaciable afán por transformar y transgredir. Gracias por abrirme puertas y ventanas, por guiarme en esta maratón que, ahora sí, llega a la meta. Mari, mi primera referencia de mujer investigadora—y profesora, y gestora, y coordinadora… tu excelencia y compromiso profesional solo lo supera tu calidez humana. Gracias por tu complicidad, disposición y comprensión durante esta montaña rusa. Las reuniones siempre serán mejores contigo porque acaban en risa floja. Gracias a CESPYD, mi grupo de investigación. Trabajar en equipo—especialmente en éste—me ha permitido crecer personal y profesionalmente, ser partícipe de sus logros y de los de mis compañeros. Gracias a sus impulsores, Manolo, Mari, Carlos, Virginia y Vicente por hacer de la universidad una luz para los más olvidados y darme un lugar en esta tarea. A Virginia, con quien comencé ayudando en su tesis doctoral y he tenido la suerte de contar en la mía, gracias por valorarme en todos los sentidos. Gracias también a Fátima y Emilio. Mi recuerdo y
vi agradecimiento para los estudiantes que contribuyeron al crecimiento del grupo y al mío propio, en especial, Jenny, Giulia, Belén, Lucas, Rocío, Irene y Javi. Millones de gracias a mi antecesora y predecesora doctorandas. A Rocío, compañera de inicios, abrazo menudo y corazón gigante, superación e idealismo. A Daniela, compañera de finales, golpe de aire fresco, my person, oído atento y consejo infinito. A las dos, gracias por verme siempre como debería haberme visto yo, gracias por mantenerme cuerda. Vuestra amistad ha sido lo mejor de estos cuatro años. A mi madre, Pepa, perdón y gracias. Perdón por tener que aguantar—injustamente—mis días malos. Gracias por ser mi sustento principal, un ejemplo de lucha y estar siempre presente; gracias por tu apoyo y amor incondicional. A mi abuelo, Pepe, para quien no hubo mejor regalo que leer mis trabajos publicados y se fue sin verme conseguir el título de doctora, gracias por alentarme y ayudarme a llegar hasta aquí. A mi padre, José Ignacio, gracias por acompañarme en el camino, por intentar ver el mundo como yo lo veo, por celebrar mis éxitos con orgullo. A Paula, mi hermana, la noche de mi día, gracias por estar cada vez más cerca. A los que me quieren y aprecian—familia y amigos de Sevilla, Asturias, de la facultad, de la Erasmus, los repartidos por el mundo—gracias por los ánimos y por compartir mis alegrías, por ser escape y no reprocharme el tiempo que no os dediqué por estar con la tesis. Gracias a María, por recordarme que cada uno vive en función de su momento y del de nadie más. Y gracias infinitas a Xicu. Compartir estos años con una doctoranda y sus altibajos a 831 kms de distancia no ha sido fácil. Aun así, fuiste—eres—felicidad, refugio y roca; siempre subrayando mis posibilidades y fortalezas. Ya no quedan días de menos, solo días de más. Gracias a un sistema insostenible, pasivo y obsoleto que infravalora y a la vez se aprovecha del esfuerzo de jóvenes investigadores, condenándolos a la precariedad y limitando su desarrollo profesional y personal—especialmente en mujeres. Gracias por hacernos resilientes. Gracias a todo lo anterior, hoy, por fin, puedo responder a la dichosa pregunta de cuándo voy a acabar la tesis. Al “¿y qué vas a hacer después?” solo puedo decir que estoy impaciente por descubrirlo pero que, gracias a las capacidades, habilidades y roles adquiridos y gracias al apoyo de los que me rodean, intuyo que, sea lo que sea, voy a estar bien.
vii A Pepa y Pepe.
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ix Conceptualization and Evaluation of Governance for Roma Health in Spain Executive Summary 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
xvi Nacionales para la Inclusión de la Población Gitana (en inglés, National Roma Integration Strategies), detectar errores y explorar posibles palancas de cambio (IOM, 2013). CESPYD, el Centro de Investigación y Acción Comunitaria de la Universidad de Sevilla—al que pertenezco desde 2011, fue el consultor nacional encargado de elaborar el informe de progreso de la implementación en España de la rama de salud de dicha estrategia en colaboración con la Agència de Salut Pública de la Generalitat de Catalunya. Fue aquí donde encontré el escenario para realizar mi tesis doctoral, proyectando las inquietudes que había desarrollado en mi trabajo en NAKMI. El punto de partida de mi trabajo sería constatar si el compromiso formal de las instituciones para superar las inequidades que sufre la población gitana relacionadas con su salud estaba plasmándose en políticas y acciones efectivas, cómo lo estaban logrando y qué mecanismos de cambio podían ser desarrollados para corregir errores y asegurar la sostenibilidad de los logros. Con este fin, mi trabajo de tesis doctoral ha tratado de dar respuesta a la siguiente pregunta: ¿están las nuevas políticas europeas respondiendo de manera efectiva, sensible y sostenible a las condiciones de inequidad que sufre la salud de la población gitana en España? Términos de la Investigación y Consideraciones de Interpretación Este trabajo se centra en algunos conceptos fundamentales que deben ser aclarados: población gitana, políticas e inequidades en salud. Considerando el contexto europeo y la movilidad de su población, se hace distinción entre población gitana nacional y extranjera. La primera se refiere a aquella que nace y reside en España, la segunda a aquella que nace y vive en otros países europeos—principalmente del centro y este de Europa—o que emigran a España desde estos. El término “población gitana” es utilizado para referirse indistintamente a ambos
xvii grupos. Los adjetivos “gitano/a” son usados para aludir a elementos o características de esta población. Se ha intentado ser consistente en la utilización de esta terminología tanto en inglés como en español. No obstante, cualquier variación ha sido aclarada en el propio texto (e.g., “traveler” aparece para denotar a población gitana extranjera con altos niveles de movilidad). Todos estos términos se adecúan a los recomendados por el Consejo de Europa para referirse a esta población (Council of Europe, 2012a). El término “política” se emplea en este trabajo como la traducción literal del inglés “policy.” La World Health Organization define “políticas de salud” como las decisiones, planes y acciones que se llevan a cabo para lograr objetivos específicos de salud en una sociedad (WHO, 2018a). Estas políticas surgen de la interacción de diferentes agentes a múltiples niveles (e.g., gubernamental, comunitario, organizacional) (Ingleby, 2012). Así, “políticas” se emplea para referirse a las leyes, estrategias, planes y programas encaminados a mejorar la salud de la población gitana. Las “prácticas” son la implementación y traducción de estas políticas en acciones que permiten conseguir los objetivos planteados. Esta tesis se centra en políticas de salud dirigidas a población gitana en España, siendo éstas principalmente la Estrategia Nacional de Inclusión de Población Gitana y otros compromisos adoptados por los gobiernos nacionales y regionales para abordar los problemas e inequidades en salud de la esta población. Esta tesis utiliza la definición de la World Health Organization que entiende las inequidades en salud como las diferencias en el estado de salud entre poblaciones debido a las condiciones en las que nacen, crecen, viven, trabajan y envejecen. Estas condiciones están determinadas por la distribución desigual del dinero, el poder y los recursos, lo que hace que las
xviii inequidades en salud sean injustas y evitables (WHO, 2017). Es responsabilidad de los gobiernos y de todos los agentes implicados eliminar estas inequidades y asegurar la salud de las poblaciones independientemente de su raza o condición económica o social (WHO, 2018b). Por último, esta tesis sigue las recomendaciones de la Real Academia Española para el abordaje de las cuestiones de género, proponiendo el uso del masculino genérico en su condición de término no marcado en la oposición masculino/femenino. Esta decisión se ha tomado en virtud de la economía expresiva, sin ninguna intención de tipo discriminatorio. Estructura de la Tesis Esta tesis doctoral ha sido desarrollada a través de un compendio de publicaciones y se presenta a lo largo de tres capítulos: Introducción, Resultados y Discusión (Boletín Oficial de la Universidad de Sevilla, 2012). La Introducción contextualiza y justifica el problema de investigación y expone los objetivos de la tesis doctoral. La literatura utilizada en este primer capítulo data hasta 2014, año en el que planteo los objetivos y realizo la principal recogida de datos. El Capítulo 2 presenta los resultados de investigación a través de los trabajos publicados: un informe científico-técnico y tres artículos científicos. Estas publicaciones pueden ser leídas de manera independiente; aunque comparten marco teórico, metodológico y, en ocasiones, resultados, cada publicación representa un trabajo original que acerca el proceso de investigación a la consecución de los objetivos propuestos. Finalmente, el Capítulo 3 presenta una discusión de las principales aportaciones de este trabajo de investigación en función de la literatura existente actualizada, además de sus limitaciones y una conclusión final.
xix Tabla de Contenidos Agradecimientos ............................................................................................................................. v Executive Summary ....................................................................................................................... ix Prefacio ......................................................................................................................................... xv Índice de Abreviaturas y Acrónimos ........................................................................................... xxi Capítulo 1 Introducción .................................................................................................................. 1 Las Inequidades en Salud de la Población Gitana en Europa y España como Resultado de una Secular Discriminación ............................................................................................................... 1 Los Desafíos de las Políticas de Salud Dirigidas a Población Gitana en Europa y España ....... 7 Combatiendo las Inequidades en Salud de la Población Gitana a partir del Fortalecimiento de la Gobernanza para su Salud ..................................................................................................... 13 Capítulo 2 Resultados .................................................................................................................. 17 “Implementation of the National Roma Integration Strategy and Other National Commitments in the Field of Health – Spain. A Multi-stakeholder Report on 2005-2014 Developments” (Garcia-Ramirez, Escobar-Ballesta & Lizana, 2015) ............................................................... 17 “Taking Stock of Roma Health Policies in Spain: Lessons for health governance” (Escobar- Ballesta, Garcia-Ramirez & De Freitas, 2018) ......................................................................... 19 “Salud Sexual y Reproductiva en Mujeres Gitanas: El Programa de Planificación Familiar del Polígono Sur” (Escobar-Ballesta, Garcia-Ramirez, Albar & Paloma, 2018) ........................... 20 “El Reto de la Equidad en las Políticas Sanitarias Dirigidas al Pueblo Gitano en España” (Garcia-Ramirez, Escobar-Ballesta, Albar & Lizana, 2016) .................................................... 22 Capítulo 3 Discusión ..................................................................................................................... 25 Limitaciones y Consideraciones para Investigaciones Futuras ................................................ 34 Conclusion ................................................................................................................................ 36 Lista de Referencias ...................................................................................................................... 39 Apéndice A ................................................................................................................................... 53 Garcia-Ramirez, M., Escobar-Ballesta, M., & Lizana, T. (2015). Implementation of the NRIS and Other National Commitments in the Field of Health – Spain. A Multi-stakeholder Report on 2005-2014 Developments. International Organization for Migration. ......................................... 53 Apéndice B.................................................................................................................................. 177 Escobar-Ballesta, M., Garcia-Ramirez, M., & De Freitas, C. (2018). Taking stock of Roma health policies in Spain: Lessons for health governance. Health Policy, 122, 444-451. doi:10.1016/j.healthpol.2018.02.009 .......................................................................................... 177 Apéndice C.................................................................................................................................. 187 Escobar-Ballesta, M., García-Ramírez, M., Albar, M. J., & Paloma, V. (en prensa). Salud Sexual y Reproductiva en Mujeres Gitanas: El Programa de Planificación Familiar del Polígono Sur. Gaceta Sanitaria. doi:10.1016/j.gaceta.2017.12.006 ................................................................. 187 Apéndice D ................................................................................................................................. 197 García-Ramírez, M., Escobar-Ballesta, M., Lizana, T., & Albar, M. J. (2016). El reto de la equidad en las políticas sanitarias dirigidas al pueblo gitano en España. Global Journal of Community Psychology Practice, 7, 1-15. .................................................................................. 197 Vita .............................................................................................................................................. 215
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xxi Índice de Abreviaturas y Acrónimos CCAA Comunidades Autónomas CS Centro de Salud EC European Commission ENIPG Estrategia/s Nacional/es para la Inclusión de la Población Gitana ENIPG-S Rama de salud de la Estrategia Nacional para la Inclusión de la Población Gitana FRA Fundamental Rights Agency FSG Fundación Secretariado Gitano IOM International Organization for Migration MSSSI Ministerio de Sanidad, Servicios Sociales e Igualdad PG Población gitana RHIPEX Roma Health Integration Policy Index SNS Sistema/s nacional/es de salud UE Unión Europea WHO World Health Organization
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1 Capítulo 1 Introducción En este capítulo expondré que el bajo impacto de las políticas de salud en la población gitana (PG) tiene el mismo origen que los problemas de salud que sufre y las injustas condiciones de vida que soporta. La discriminación sufrida por la PG ha generado un círculo vicioso que mantiene la brecha en salud que la separa del resto de la población y fagocita cualquier iniciativa que trate de superarla. Por tanto, sostenemos que el marco conceptual y metodológico que debe inspirar las políticas europeas actuales debe estar dirigido a combatir las inequidades de la PG a partir de la promoción de estructuras que aseguren la gobernanza para su salud. Las Inequidades en Salud de la Población Gitana en Europa y España como Resultado de una Secular Discriminación Desde su llegada a Europa desde el norte de India entre los siglos IX y XIV, la historia de la PG ha estado continuamente marcada por la persecución y el ostracismo; huyendo de la esclavitud, del genocidio, de ataques racistas, y de leyes que castigaban sus tradiciones y forma de vida (Cahn & Guild, 2010; Hajioff & McKee, 2000; Parekh & Rose, 2011; Ringold, Orenstein & Wilkens, 2005; Strochlic, 2011). En España, la PG ha sobrevivido desde el siglo XV entre la aceptación y el rechazo. En un país predominantemente católico, muchos fueron obligados a asimilar la cultura y religión de la mayoría o ser expulsados. Otros decidieron vivir escondidos para mantener sus tradiciones, subsistiendo en la mendicidad y aprovechando la
2 paradójica fascinación que la sociedad mayoritaria sentía por sus costumbres y sus habilidades para los negocios y las artes (Fundacion Secretariado Gitano [FSG], 2013a; Gamella, 2007; La Parra, Gil-González & Jiménez, 2013; Ringold, Orenstein & Wilkens, 2005). No fue hasta 1978, con la restauración de la Democracia, que la PG quedaba amparada por la Constitución, reconociendo sus derechos y prohibiendo cualquier discriminación debido a la etnia (FSG, 2006; Ringold, Orenstein & Wilkens, 2005). A día de hoy, la PG constituye la minoría étnica más grande de Europa; entre 12 y 15 millones viven en el continente y alrededor de 10 millones se encuentran repartidos por la Unión Europea (UE; European Union, 2008). Mientras que Rumanía es el país con mayor número de PG nacional en el este de Europa, España destaca por serlo en el occidente (Ringold, Orenstein & Wilkens, 2005). Las últimas encuestas sitúan a la PG entre 725.000 y 1,5 millones de personas; aproximadamente, el 40% de la PG vive en Andalucía, seguida de Cataluña, Madrid y Valencia (Damonti & Arza, 2014; Laparra, 2011). A pesar de estas cifras, la PG no está oficialmente reconocida como una minoría étnica nacional (FSG, 2006). Además, junto con Bélgica, Francia e Italia, España cuenta con una importante PG extranjera procedente de Bulgaria y Rumanía que, debido a la ampliación de la UE en la última década, han decidido buscar mejores condiciones de vida fuera de sus países de origen (Cahn & Guild, 2010; Gamella, 2007; McKee, Balabanova & Steriu, 2007; Ringold, Orenstein & Wilkens, 2005). En general, la PG es un grupo heterogéneo en el que múltiples factores (e.g., religión, oficio, uso de la lengua romaní, tradiciones y prácticas, etc.) la caracterizan como una minoría étnica única y diversa (Laparra, 2007, 2011; Ringold, Orenstein & Wilkens, 2005). No obstante,
3 la PG también comparte fortalezas independientemente de su lugar de origen o residencia. Ésta tiene una gran capacidad de crecimiento: cuenta con una población muy joven y escasa población anciana (FSG, 2009; Laparra, 2011). Mientras que el hombre es tradicionalmente la figura de autoridad en los espacios públicos, la mujer es esencial para garantizar los cuidados y preservar la continuidad del linaje, sus valores y costumbres (Dimitrova, Chasiotis, Bender & Van de Vijver, 2014; FSG, 2012a; Vincze, 2006, 2014). La familia es el espacio determinante para la socialización y el desarrollo psicológico de sus miembros, donde construyen una identidad colectiva resistente y una fuerte cohesión social con la que hacer frente a la discriminación y estigmatización que sufren secularmente (Dimitrova et al., 2014; Lee, Keyes, Bitfoi, Mihova, Pez et al., 2014; Smith & Ruston, 2013). Respecto a las inequidades en salud, se ha puesto de manifiesto cómo la salud de la PG en Europa es peor que la del resto de población independientemente de su estatus social (Foldes & Covaci, 2012; La Parra, 2009). En España, diversos estudios avalan esta situación y evidencian los problemas de salud que sufre la PG (Cabedo, Ortells i Ros, Baquero, Bosch, Montero et al., 2000; Ferrer, 2003; La Parra, 2009; Laparra, 2007; Ministerio de Sanidad y Consumo & FSG [MSC-FSG], 2005). Aunque la mayoría de estos trabajos no incluyen datos sobre PG extranjera, estudios realizados en Cataluña muestran que su estado de salud es peor que el de la PG nacional y comparable al de la PG en sus países de origen (López & Sáez, 2009; Méndez, 2011). Se cree que, en general, el estado de salud de la PG es mejor en España que en países centroeuropeos debido al mayor desarrollo económico y a la implementación de políticas destinadas a mejorar la calidad de vida de la población general en los últimos años (e.g., asistencia sanitaria universal, rehabilitación de las zonas marginales, ampliación de la escolarización obligatoria) (FSG, 2012b;
10 fuentes de verificación e indicadores de evaluación, la débil coordinación entre gobiernos e instituciones, la descentralización administrativa y la ausencia de mecanismos de control de gastos y resultados (MSSSI, 2013). Cinco años después del inicio de la Década, la EC prioriza la inclusión de la PG dentro de la estrategia Europa 2020—el marco de referencia para el crecimiento inteligente, sostenible e integrador de la UE—tras evidenciar la persistente e inaceptable situación de la PG (EC, 2010ab) Esto, junto con otros estudios, pusieron de manifiesto los desafíos de las políticas en salud dirigidas a PG para ser efectivas, entre ellas: el bajo apoyo, compromiso y liderazgo de los responsables; la brecha entre el diseño y la implementación; la dificultad de impactar en los sectores más vulnerables de la PG; la débil inclusión de las recomendaciones europeas a nivel regional y local; la escasa financiación, malversación de fondos y corrupción; la baja participación de la PG; la escasa evaluación e inexistencia de datos fiables; la débil difusión y sostenibilidad de los programas, así como el solapamiento de iniciativas (EC, 2010b; Fésüs, Piroska, McKee & Ádány, 2012; Foldes & Covaci, 2012; Parekh & Rose, 2011). Ante esta situación, la WHO, dentro del marco Salud 2020, enfatiza el abordaje de las inequidades en salud de la PG a partir de la reducción de las desigualdades y el fortalecimiento de SNS centrados en las personas, universales, equitativos, sostenibles y de calidad (WHO, 2013). Previamente—y sin haber finalizado la Década—la EC moviliza a los estados miembros bajo el marco de las Estrategias Nacionales para la Inclusión de la PG (ENIPG; en inglés, National Roma Integration Strategies) desde 2012 hasta 2020 (EC, 2011). El objetivo es complementar y reforzar las políticas existentes desde una perspectiva gitana, apoyar a las
11 diferentes autoridades en su monitorización y diseminación, construir una red de diálogo y participación entre agentes claves, y desarrollar estrategias para abordar las inequidades de la PG en los principales determinantes sociales (i,e., salud, empleo, educación y vivienda). La rama en salud de las ENIPG (ENIPG-S) deben asegurar la cobertura y acceso de la PG a los servicios sanitarios (e.g., básicos, emergencia, especializados, prevención) en las mismas condiciones que el resto de la población, desarrollar acciones para los sectores más vulnerables (e.g., mujeres, niños, asentamientos) e incluir PG cualificada en los programas de salud (EC, 2012, 2013). En España, la ENIPG-S se basa en las políticas anteriores y otras vigentes (e.g., Estrategia Nacional de Equidad en Salud) y diferencia objetivos para población adulta e infantil (MSSSI, 2012). En adultos, estos se dirigen a mejorar la percepción de la salud, y reducir los accidentes de tráfico, el tabaquismo en hombres y la obesidad en mujeres, y el número de éstas que nunca han ido al ginecólogo. En menores, se pretende reducir el número de accidentes domésticos y la obesidad e incrementar la salud bucodental (MSSSI, 2012). Para ello se establecen líneas de acción estratégicas específicas relacionadas con la accesibilidad, uso y eficacia de los servicios sanitarios así como de cooperación administrativa y participación, y otras de carácter transversal (e.g., acción social, conocimiento disponible, género, PG extranjera). Al igual que en planes anteriores, la financiación de la ENIPG-S proviene de partidas presupuestarias generales y específicas. El MSSSI es el responsable de su planificación, seguimiento y evaluación, y cuenta con mecanismos de cooperación técnica en la Administración General del Estado, las CCAA y el Consejo Estatal del Pueblo Gitano. A pesar de que la publicación de la ENIPG-S fue en 2012, su implementación oficial no tuvo lugar hasta la divulgación del Plan Operativo en 2014 (MSSSI, 2014).
12 A día de hoy, el bajo impacto de las políticas de salud dirigidas a PG también se deriva del débil poder ejecutor de los organismos europeos que resultan en políticas discriminatorias. Mientras que su rol se limita a promover recomendaciones y directrices a los países en cuestiones de no discriminación y visibilizar las inequidades de la PG, la responsabilidad última recae en los gobiernos—muchas veces abiertamente racistas—y en sus interpretaciones de dichas recomendaciones (Fésüs et al., 2012; Parekh & Rose, 2011; Vincze, 2014). Estos gobiernos acaban desarrollando políticas neoliberales que desatienden los determinantes sociales de la salud, buscan curar en lugar de cuidar, distribuyen recursos en base a la igualdad en lugar de la equidad, reducen la inversión pública y eliminan la responsabilidad del estado sobre sus ciudadanos y sobre el fracaso de sus políticas (Beauchamp, 2010; Navarro, 2013; Nelson, 2013). Voces críticas alertan que el fin de estas políticas no es integrar a la PG sino europeizarla para convertirla en fuerza laboral, promoviendo el asistencialismo, racializando los problemas de salud y despolitizando sus causas reales, perpetuando así el ciclo de segregación e inequidad de (Fésüs et al., 2012; Vincze, 2014). Por otro lado, las políticas tienden a fracasar debido a que los espacios de participación y decisión durante su diseño, implementación y evaluación han sido tradicionalmente ocupados por personas ajenas a la comunidad gitana y con un perfil muy institucionalizado (e.g., planificadores/as, políticos/as, expertos/as). Generalmente, los proveedores de servicios socio-sanitarios responsables de implementar estas políticas a nivel local han sido relegados a una posición secundaria. Y cuando se ha querido incluir a la PG, ha sido de manera instrumentalizada y tokenizada, legitimando decisiones ya tomadas por expertos y/o a través de interlocutores que han cooptado la voz de la comunidad afirmando representar sus intereses a pesar de no ser reconocidos por ésta (EC, 2010; Maya & Mirga, 2014; Tremlett &
13 McGarry, 2013). Igualmente, la protección de datos relativos a la etnia—aun con la intención de protegerla—ocasiona la invisibilización y negligencia de los problemas e inequidades en salud de la PG. Así, las políticas se basan en estudios poco representativos, de muestras pequeñas, desactualizados, que refieren principalmente a PG en condiciones de exclusión, y que no disponen de sistemas de evaluación y monitorización fiables (Cook et al., 2013; EC, 2010; Fésüs et al., 2012; Foldes & Covaci, 2012; Hajioff & McKee, 2000; Open Society Foundations, 2010; Oprea, 2003; Parekh & Rose, 2011; Tremlett & McGarry, 2013). Esto se traduce en políticas desconectadas de las realidades y necesidades de la PG, con dificultades para ser implementadas y generar impacto, y que perpetúan la reproducción el ciclo de discriminación e inequidad. En definitiva, las dificultades de las actuales políticas de salud dirigidas a PG exigen nuevas formas de hacer políticas. Combatiendo las Inequidades en Salud de la Población Gitana a partir del Fortalecimiento de la Gobernanza para su Salud Las políticas de salud dirigidas a la PG necesitan cambios significativos durante su diseño, implementación y evaluación. La gobernanza para la salud se presenta como el marco desde el que desarrollar estos cambios. The Lancet–University of Oslo Commission on Global Governance for Health define “gobernanza para la salud” como los procesos encaminados a evaluar y superar la distribución asimétrica de poder y de los recursos económicos, intelectuales, normativos y políticos que afectan a la salud, limitan las oportunidades para su abordaje y desencadenan situaciones de injusticia y opresión (Ottersen, Dasgupta, Blouin, Buss, Chongsuvivatwong, et al., 2014). La gobernanza para la salud va más allá del “gobierno de la
14 salud,” referido al uso de instituciones, normas y procesos formales e informales por parte de los estados, instituciones gubernamentales y actores no estatales para abordar los desafíos de la salud (Ottersen et al., 2014). La gobernanza permite desmantelar la discriminación presente en las políticas de salud y en las instituciones que las formulan y llevan a cabo, identificando dónde y cómo intervenir para desarrollar políticas más justas, sensibles y equitativas y mejorar la efectividad e influencia de sus resultados en la salud de la población (Griffith, Mason, Yonas, Eng, Jeffries, et al., 2007; Ottersen et al., 2014). El marco Salud 2020 de la WHO se basa en este concepto para abordar los nuevos y complejos desafíos del siglo XXI (e.g., obesidad, tabaquismo, salud mental) (Kickbusch, & Gleicher, 2012; WHO, 2013). La gobernanza para la salud de la PG puede verse beneficiada a partir de las contribuciones de la psicología comunitaria en cuanto a valores y principios, tales como la equidad, la justicia y el cambio social, y el empoderamiento de los grupos más vulnerables (Bishop, Vicary, Browne, & Guard, 2009, Nelson, 2013). Desde su aparición en los años 60 y 70, esta disciplina ha estado presente en el ámbito de la formulación de políticas. Al fin y al cabo, uno de los objetivos de la psicología comunitaria es transformar realidades sociales, las cuales están conformadas por políticas públicas que, a su vez, están mediadas por comunidades e individuos (Bishop et al., 2009). En este sentido, la psicología comunitaria puede influir en la gobernanza para la salud en cuanto a que llama a la movilización crítica de la sociedad, guía la investigación y la acción hacia la consecución de los derechos en salud, y fomentar la toma de acciones para eliminar las inequidades injustas y evitables y desarrollar políticas encaminadas a generar cambios estructurales (Balcazar, Garate-Serafini & Keys, 2004; Bishop et al., 2009, Nelson, 2013).
15 Partiendo desde la perspectiva de la psicología comunitaria, fortalecer la gobernanza para la salud con el fin de combatir las inequidades en salud de la PG exige (a) desarrollar una nueva conceptualización del problema que incluya todas las perspectivas y sus complejidades (e.g., cuestiones de poder, perspectiva de múltiples agentes); (b) establecer nuevos procesos y mecanismos de evaluación y rendición de cuentas que sean iterativos y permitan feedback; (c) reorganizar el poder en los procesos a través de la inclusión de nuevos agentes y la asunción de nuevos roles entre todos los implicados; y (d) identificar las fortalezas de cada contexto para desarrollar políticas adaptativas y resilientes (Griffith et al., 2007; Kickbusch, & Gleicher, 2012; Nelson, 2013; Ottersen et al., 2014). Esta tesis doctoral evalúa la implementación de la rama de salud de la Estrategia Nacional para la Inclusión de la Población Gitana en España y otros compromisos nacionales desde el marco conceptual y metodológico de gobernanza para la salud. Para ello se plantea los siguientes objetivos: 1. Desarrollar un marco de evaluación y redefinición de políticas para asegurar la gobernanza para la salud de la población gitana. 2. Diseñar una herramienta para evaluar la gobernanza para la salud de la población gitana. 3. Identificar buenas prácticas profesionales que aseguren la gobernanza para la salud de la población gitana a nivel local. 4. Redefinir el rol de los agentes implicados en las políticas como capacitadores de gobernanza para la salud de la población gitana.
16
17 Capítulo 2 Resultados En este capítulo presentaré los resultados de mi tesis doctoral a partir de los objetivos de investigación planteados y las publicaciones elaboradas para su consecución: un informe científico-técnico y tres artículos científicos. “Implementation of the National Roma Integration Strategy and Other National Commitments in the Field of Health – Spain. A Multi-stakeholder Report on 2005-2014 Developments” (Garcia-Ramirez, Escobar-Ballesta & Lizana, 2015) Este informe (Apéndice A), publicado por la IOM para la evaluación de la implementación de la ENIPG-S en España dentro del proyecto Equi-Health, responde al primer objetivo de esta tesis, es decir, desarrollar un marco de evaluación y redefinición de políticas de salud dirigidas a PG. Este trabajo representa, además, la base conceptual de la tesis y nutre al resto de publicaciones. Este informe se basa, en primer lugar y por primera vez en la literatura, en definir y entender las inequidades en salud de la PG y el fracaso de las políticas destinadas a eliminarlas como un problema retorcido (en inglés, wicked problem). Estos problemas tienen una naturaleza desestructurada, persistente e imprevisible que desbordan a las instituciones públicas a la hora de entender sus causas y darles solución (Australian Public Service Commission, 2007; Rittel & Webber, 1973). La literatura evidencia que el abordaje más efectivo para este tipo de
18 problemas es el que combina la perspectiva de múltiples agentes y las mejores evidencias disponibles (Australian Public Service Commission, 2007; Nelson, 2013; Rittel & Webber, 1973; Weber & Khademian, 2008). Desde esta aproximación, desarrollamos un marco para evaluar la implementación de las políticas de salud dirigidas a PG así como transformar éstas. Este marco permite asumir la complejidad e incertidumbre de los problemas retorcidos y desarrollar cambios políticos transformadores que aseguren el enmarque del problema atendiendo al contexto y las diferentes perspectivas de los agentes, que permita el debate y la participación significativa, democrática y justa de todos los implicados, así como la reasignación equitativa de recursos, derechos y responsabilidades (Nelson, 2013; Petersen, Janssen, van der Sluijs, Risbey, Ravetz, et al., 2012; Weber & Khademian, 2008). Así, el marco para la evaluación y redefinición de políticas para garantizar la gobernanza de la salud en PG consta de cuatro fases recursivas e iterativas: (a) encuadrar el problema, (b) facilitar capacidad de colaboración para evaluar, (c) promover entendimiento compartido, y (d) planificar acciones y fortalecer el compromiso futuro. A lo largo del informe se desarrollan cada una de las fases durante la evaluación de la implementación de la ENIPG-S en España, concretamente en Andalucía y Cataluña. Primero se enmarca el problema de la salud de la PG en España y se exponen las distintas respuestas políticas a nivel nacional y europeo que se han desarrollado para su abordaje (e.g., Década para la Inclusión de la PG, ENIPG-S). En segundo lugar, se presenta el proceso de colaboración establecido para la evaluación de la ENIPG-S en España a partir de la participación de múltiples agentes, una revisión de la literatura y la creación de una herramienta específica para evaluar la
19 implementación de políticas, el Roma Health Integration Policy Index (RHIPEX). A continuación, a partir del entendimiento compartido entre las distintas fuentes de información, se exponen los resultados de la evaluación de la ENIPG-S de acuerdo a las dimensiones del RHIPEX: titularidad, accesibilidad, sensibilidad y capacidad para conseguir y mantener cambios. Por último, con el fin de planificar acciones y fortalecer compromisos futuros se desarrollan prioridades que permiten redefinir las políticas de salud dirigidas a PG y se proporcionan estrategias y mecanismos para llevarlo a cabo. “Taking Stock of Roma Health Policies in Spain: Lessons for health governance” (Escobar- Ballesta, Garcia-Ramirez & De Freitas, 2018) Este trabajo (Apéndice B), publicado en la revista Health Policy, responde al segundo objetivo de la tesis: diseñar una herramienta para evaluar la gobernanza de la salud para la PG. Para ello, sintetiza la evaluación de la implementación de la ENIPG-S en España para su publicación y difusión como artículo científico, incorpora literatura actualizada e incluye la necesidad de abordar los desafíos de las políticas de salud dirigidas a PG a través del fortalecimiento de la gobernanza para su salud (Ottersen et al., 2014). Este artículo enfatiza la importancia de establecer mecanismos de monitorización y evaluación de políticas prestando especial atención al diseño ad-hoc de la herramienta RHIPEX y su aplicación. El RHIPEX se inspira principalmente en el Migrant Integration Policy Index, que evalúa y compara las políticas destinadas a promover la integración de minorías étnicas y población migrante en distintos sectores (e.g., salud, educación, reagrupación familiar, empleo, discriminación, etc.) (MIPEX, 2015). También se nutre de los criterios propuestos por la WHO y
26 2016; Decade of Roma Inclusion, 2015; FRA, 2017; Jackson, Bedford, Cheater, Condon, Emslie, et al., 2017; La Parra, Gil-González, & Torre-Esteve, 2016; MSSSI, 2016; Sándor et al., 2017). La similitud de nuestros resultados con otros estudios y la persistencia de las inequidades en la PG europea nos permiten obtener algunas lecciones de nuestra experiencia para contribuir a conceptualizar políticas efectivas, sensibles y sostenibles dirigidas a combatir las inequidades en salud que sufre la PG. Las lecciones aprendidas que a continuación se presentan—introducidas escuetamente en algunas publicaciones de esta tesis—tratan de facilitar su diseminación y generalización en contextos similares. La gobernanza para la salud de la PG necesita un abordaje interseccional e intersectorial, así como la inclusión de prioridades vinculadas a la salud en las otras políticas sectoriales. La evaluación de la ENIPG-S en España ha puesto de manifiesto la escasa sensibilidad y adaptación de las políticas para abordar los diversos determinantes personales y sociales de la salud. La PG se encuentra en una posición de mayor vulnerabilidad debido a la interacción de sus diversas identidades sociales (e.g., etnia, edad, género, estatus social y migratorio) con sus condiciones de vida (i.e., educación, empleo, vivienda, aceptación social, acceso a recursos). Esta falta de enfoque interseccional—que ha conducido a priorizar unos elementos sobre otros en políticas anteriores—ha perpetuado asimetrías y reproducido desigualdades en comparación con el resto de la población (Ferree, 2009; Hankivsky, Grace, Hunting, Giesbrecht, Fridkin, et al., 2014; Maya & Mirga, 2014; Oprea, 2003; Palencia, Malmusi & Borrell, 2014). Nuestro estudio ha permitido comprobar la validez de este enfoque en las prácticas de éxito llevadas a cabo en contextos locales significativos. Las profesionales del programa de planificación familiar del CS Polígono Sur ajustaron protocolos y prácticas para
27 atender las condiciones de vulnerabilidad de sus usuarias (i.e., mujeres, gitanas, pobres, en exclusión, con bajo nivel educativo y bajo acceso y adherencia a tratamientos y programas de prevención) consiguiendo mejorar no solo la accesibilidad sino también sensibilidad hacia la PG del programa. En este sentido, la literatura coincide que de poco sirve mejorar el acceso al SNS o capacitar a los profesionales en competencias culturales si simultáneamente no se adaptan los servicios a las personas a las que van dirigidos (Aiello, Flecha & Serradell, 2018). La evaluación de la ENIPG-S también ha mostrado la necesidad de adoptar una perspectiva intersectorial en las políticas de salud, que obligue al sector sanitario a trabajar colaborativamente con el resto de ejes sectoriales que determinan la salud (e.g., educación, vivienda, empleo, etc.). Por ejemplo, para adaptar el programa de planificación familiar a las necesidades de las usuarias gitanas, las profesionales del CS Polígono Sur tuvieron que establecer lazos de colaboración con servicios sociales, las escuelas e institutos de la zona, e incluso con la propia comunidad gitana a través de las madres y suegras de las más jóvenes. Conseguir y mantener la salud de la PG no puede ser sólo un esfuerzo de las políticas sanitarias sino de todos los sectores involucrados en los problemas que presentan (La Parra & Jiménez, 2016). Nuestro estudio ha evidenciado las dificultades que supone llevar esto a cabo debido a la fragmentación de las políticas actuales y a la falta de comunicación y colaboración entre los distintos sectores y agentes. Asegurar la gobernanza para la salud de la PG desde estas aproximaciones pasa por la construcción de redes de políticas y alianzas multinivel que fomenten el diálogo, reduzcan los conflictos de intereses y promuevan acuerdos y estrategias transversales y sistémicas que protejan la salud de toda la PG (Dimova, Rohova, Hasardzhiev & Spranger, 2017; Fésüs et al., 2012; Kicksbusch & Gleicher, 2012; Mannheimer, Gulis, Lehto & Östlin,
28 2007; Rorke, Matache & Friedman, 2015). La evaluación de la ENIPG-S en España ha seguido esta aproximación a través de la construcción de una plataforma de agentes clave a distintos niveles, incluyendo representantes del asociacionismo gitano, organizaciones sociales progitanas, mediación en salud gitana, investigación, planificación de políticas, coordinación de servicios sanitarios y servicios de políticas regionales, etc. La gobernanza para la salud de la PG necesita de la participación transformadora de la PG. La evaluación de la ENIPG-S en España coincide con la literatura en que los esfuerzos por asegurar la participación de la PG en las políticas se han realizado a través de estrategias que la han instrumentalizado, siendo frecuentemente tokenizada y carente de representatividad y legitimidad (Maya & Mirga, 2014; Rorke, Matache & Friedman, 2015; Santos Carrillo, 2018; Tremlett & McGarry, 2013). Esto lo hemos podido comprobar al incluir en la plataforma de agentes únicamente a representantes de asociaciones gitanas y pro-gitanas y no a sus usuarios o a PG perteneciente a los contextos que evaluamos. Nuestro estudio ha puesto de manifiesto una creciente burocratización del asociacionismo gitano. Los recortes en la financiación de las asociaciones obligan a éstas a centrar sus esfuerzos en mantener nichos de trabajo y posiciones de influencia en lugar de detectar y adaptar sus programas a las necesidades y problemas de las comunidades en riesgo. Evitar esto pasa por fortalecer la gobernanza para la salud de la PG a partir de la participación real y efectiva a nivel local de grupos habitualmente silenciados (e.g., mujeres, menores, colectivo LGTBI+) con el fin de desafiar los discursos dominantes y los conflictos de intereses dentro del asociacionismo durante la formulación, implementación y evaluación de políticas (Boyce & Brown, 2017; De Freitas & Martin, 2015; Fésüs et al., 2012; FRA, 2017; Griffith et al., 2007; Hujo, 2016; Nelson, 2013; Tremlett & McGarry, 2013). Esta
29 participación dará lugar a escenarios comunitarios seguros y abiertos con capacidad para empoderar a la PG a ejercer influencia real en las políticas que les afectan, transformando éstas y sus contextos para hacerlos más justos, sensibles y eficaces (Balcazar, Suarez-Balcazar, Adames, Keys, García et al., 2012; De Freitas, García-Ramirez, Aambø, & Buttigieg, 2014; Paloma, Garcia-Ramirez, de la Mata, & Association AMAL-Andaluza, 2010). La gobernanza para la salud de la PG necesita nuevos roles entre los agentes implicados. Durante la evaluación de la ENIPG-S en España hemos comprobado que el rol de los psicólogos comunitarios como capacitadores de la gobernanza para la salud de la PG puede extrapolarse a otros agentes implicados durante el proceso. Los actores encargados de implementar estas políticas suelen desarrollar nuevos roles como mediadores e instigadores para asegurar su eficacia en función de las demandas del contexto y la PG, las características de sus organizaciones y la ocurrencia de nuevas necesidades y desafíos (Balcazar, Garate-Serafini & Keys, 2004). Como ejemplo, las profesionales de planificación familiar del CS Polígono Sur aumentaron su conciencia crítica, las relaciones de colaboración positivas entre ellas y adquirieron competencias que les llevaron a redefinir los protocolos y prácticas, buscar y reasignar recursos, tomar decisiones y actuar para asegurar cuidados de salud sexual y reproductiva ajustados para las usuarias gitanas. La evaluación de la ENIPG-S también ha permitido identificar el trabajo de los mediadores en salud que facilitan el acceso de la PG a los servicios y mejoran la sensibilidad de estos (e.g., resolviendo asuntos administrativos, eliminando barreras culturales y de idioma, etc.). A pesar de que la figura del mediador está ampliamente reconocida en Europa, por sí solos, pueden crear el efecto perverso y paradójico de consolidar la brecha que separa a la PG del resto, creando dependencia de su figura o sin generar
30 cambios estructurales que combatan de raíz las inequidades (Belak, Dankulincova, Madarasova, van Dijk, & Reijneveld, 2017; La Parra & Jiménez, 2016; National Network of Health Mediators, 2017). Este desafío requiere ampliar el rol de capacitador de gobernanza para la salud de la PG más allá de la mediación con el fin de no solo puentear la brecha que separa a ésta del resto sino eliminarla definitivamente. Nuestro trabajo ha puesto de manifiesto la importancia de capacitar a todos los agentes implicados para abogar por los derechos en salud de la PG. Según Aicher, Napier y Pickard (2010, p. 3), abogar es “el intento organizado por cambiar la política, prácticas y/o actitudes presentando evidencias y argumentos de cómo y por qué debe ocurrir el cambio.” Abogar permite a los agentes instigar cambios e influir directamente en las instituciones y políticas, combatiendo los desequilibrios de poder y el antigitanismo (Balcazar, Garate-Serafini & Keys, 2004; Griffith et al., 2007). La capacitación de los profesionales sanitarios en abogacía para la salud ha sido señalada como un elemento central para la defensa de una salud pública y equitativa en España (González Rojo, Álvarez-Dardet, López Fernández, 2017). Igualmente, estos roles deben ser asumidos por la propia PG. Organismos como la CE y la WHO afirman que el progreso real en la salud de la PG llegará cuando ésta sea la abogada de su propia salud, diseñando, implementando y evaluando las políticas y programas que les atañen (Crowley, Genova, & Sansonetti; Skenderovska, 2011). Por ejemplo, el estudio sobre el programa de planificación familiar identificó la necesidad de capacitar a mujeres gitanas como abogadas de su salud sexual y reproductiva con el fin de concebir su salud y establecer sus expectativas de vidas a partir de sus fortalezas y no por imposiciones culturales o mandatos de género. La gobernanza para la salud de la PG necesita de la identificación, emplazamiento y capacitación de abogados
31 de salud gitana dentro de las comunidades, con poder y oportunidades para liderar cambios de manera colectiva que afecten a su salud (Abdkieeva & Covaci, 2018; Aicher, Napier, & Pickard, 2010; Reysen, Slobodnikova & Katzarska-Miller, 2016; Rorke, Matache & Friedman, 2015; WHO, 2013). La gobernanza para la salud de la PG necesita mecanismos de rendición de cuentas que aseguren visibilidad, transparencia y corresponsabilidad. La evaluación de las políticas de salud ha seguido tradicionalmente el mismo planteamiento lineal que su diseño e implementación (i.e., describir el problema, establecer una agenda, recoger datos, plantear soluciones y seleccionar la mejor, formular la política y aplicarla). Su finalidad ha sido valorar en qué medida las acciones ejecutadas habían producido los efectos deseados, siendo sus resultados pocas veces usados para producir mejoras en éstas (Hegger, 2017; Sanderson, 2002). Para la evaluación de la ENIPG-S hemos optado por utilizar procesos y herramientas de evaluación ajustados a políticas que presentan desafíos durante su diseño e implementación (e.g., desequilibrios de poder, conflicto de intereses, escasez de evidencias, etc.) (Head & Alford, 2015; Nirenberg, Brawerman & Ruiz, 2000; Sanderson, 2002). Esta evaluación ha permitido identificar debilidades y fortalezas desde las que re-conceptualizar las políticas según las exigencias de la población y el contexto en el que se aplican, asegurando la gobernanza para la salud de la PG en comunidades más justas y saludables (Kicksbusch & Gleicher, 2012; Nelson, 2013; Nirenberg, Brawerman & Ruiz, 2000; Sanderson, 2002). La estrategia Salud 2020 afirma que “las políticas deberían ser implementadas como experimentos a gran escala en el que los esfuerzos por monitorizarlas y evaluarlas supongan un mecanismo esencial para que la comunidad aprenda de las experiencias adquiridas en la práctica y se adapte en consecuencia”
32 (WHO, 2013, p. 58). La identificación, sistematización, diseminación e institucionalización de buenas prácticas y experiencias de éxito a nivel local puede arrojar luz sobre estos desafíos, no solo retroalimentando las políticas sino también aportando información a áreas tradicionalmente libre de evidencias (EC, 2010; Fésüs et al., 2012). Mientras se debate en profundidad la recogida de datos desagregados por etnia, nuestro trabajo ha planteado la necesidad de fortalecer y diversificar—en lugar de acumular—la base de evidencias en salud de la PG a partir de los conocimientos y experiencias del asociacionismo gitano y los proveedores de servicios que implementan día a día las políticas. La evaluación de la ENIPG-S en España también ha constatado cómo la descentralización de poderes y competencias y la escasa diseminación y evaluación dificultan su impacto. La ENIPG-S ha sido incapaz de contravenir la pérdida de derechos en salud como resultado del Real Decreto Ley 16/2012—impuesto por el gobierno central el mismo año en que adopta la estrategia europea—a pesar de contar con el apoyo de las instrucciones de los gobiernos regionales de Andalucía y Cataluña que pretendían asegurar este derecho (Boletín Oficial del Estado, 2012; Junta de Andalucía, 2012; Servei Catalá de Salut, 2012; Servicio Andaluz de Salud, 2012). Por otro lado, la ENIPG-S y el resto de compromisos asumidos por España son desconocidos por la comunidad gitana, por la sociedad civil y por muchos responsables encargados de implementarlas y gestionarlas. Además, las evaluaciones y monitorizaciones de la Década y la ENIPG-S en España han tenido lugar principalmente a nivel nacional, con indicadores superficiales relativos a la justificación de gastos o al tipo de acciones implementadas, y realizadas por los mismos encargados de diseñarlas (MSSSI, 2013, 2015, 2016, 2017). Todo ello ha puesto de manifiesto la necesidad de desarrollar e implementar mecanismos de
33 monitorización durante todo el proceso de gobernanza (e.g., selección agentes involucrados, diseño, implementación, etc.) y evaluación de resultados que permitan ajustar las políticas nacionales a las necesidades locales, especialmente en contextos comunitarios con mayor riesgo de vulnerabilidad (Hujo, 2016; Kickbusch & Gleicher, 2012; Ottersen et al., 2014). La literatura recomienda realizar la monitorización y evaluación de políticas desde coaliciones compuestas por miembros de la sociedad civil, organizaciones sociales, instituciones públicas y gubernamentales y otros agentes claves de la comunidad en particular (Fox, 2016; Fox & Aceron, 2016; Mannheimer, Gulis, Lehto, & Östlin, 2007; Mittlemark, 2007). Para ello es necesario que los agentes integren la importancia de evaluar, desarrollen capacidades y habilidades para ello y lo asuman como parte de su rutina; y que sus organizaciones proporcionen los recursos necesarios y utilicen los resultados para revertirlos en la mejora de sus políticas. La evaluación de la ENIPG-S en España ha constatado la necesidad de incorporar, además, la figura de los abogados de salud gitana. La evaluación hecha desde lobbies políticos está encaminada principalmente a parchear fallos durante la implementación. Evaluar desde coaliciones locales de múltiples agentes que incluyen abogados de salud gitana permite cuestionar las políticas generando evidencias de su funcionamiento e impacto real, identificando y modificando las causas de su fracaso, y reconociendo aliados y adversarios que pueden contribuir o entorpecer su eficacia (Fox, 2016; Fox & Aceron, 2016). La evaluación desde una perspectiva de abogacía se enfoca al cambio, con intención de crear sinergias e influenciar directamente en las políticas y en las comunidades. Esto permite movilizar y comprometer a todos los implicados en garantizar la transparencia, corresponsabilidad y rendición de cuentas, evitando la descentralización y el desequilibrio del poder, la exención de obligaciones ante los
34 fracasos o el cruce de culpas y acusaciones (Fox, 2016; Fox & Aceron, 2016; Griffith et al., 2007; Hujo, 2016; Mannheimer et al., 2007; Mittlemark, 2007; Nirenberg, Brawerman & Ruiz 2000). Limitaciones y Consideraciones para Investigaciones Futuras Nuestro estudio tiene limitaciones que deberían ser tenidas en cuenta para ponderar el alcance de nuestras afirmaciones y dirigir investigaciones futuras. En primer lugar, la evaluación de la implementación de la ENIPG-S en España únicamente tuvo lugar en Andalucía y Cataluña y refería, principalmente, a PG nacional. Esto implica, por un lado, que este estudio ha servido para evaluar de manera general las razones de éxito y fracaso de la implementación de esta política. Sin embargo, no ha evaluado de manera sistemática y sostenida un caso en particular en un contexto más específico. Por otro lado, los resultados de este estudio no pueden ser generalizados a las demás CCAA, al resto de actores involucrados en la salud de la PG, ni a toda la PG en su totalidad. Específicamente, la información obtenida a través de las entrevistas a los agentes de la plataforma refleja únicamente su realidad, ayudándonos—junto con las evidencias—a crear una fotografía general de la compleja implementación de la ENIPG-S en dos contextos. A pesar de esto, el proceso, la herramienta y lecciones aprendidas de este trabajo pueden ser útiles para ser aplicados en contextos y poblaciones con características similares a las que se han utilizado en este estudio. La extensión de la plataforma de agentes, con representación de diferentes niveles de poder, y repartida en dos CCAA, complicó participar activamente en el proceso así como mantener las sinergias creadas durante los foros comunitarios. Igualmente, la fragmentación del
35 sector de la salud y de la propia ENIPG en diferentes áreas (i.e., salud, empleo, educación y vivienda) impidió obtener una perspectiva más ajustada de su implementación y sus relaciones con otras áreas. Además, confiar en la representación de la PG únicamente a través de la participación de las asociaciones nos limitó obtener una perspectiva más real y directa sobre sectores no representados por ésta, como la PG extranjera o aquella que vive segregada en asentamientos. De manera similar, en nuestro estudio hemos tenido la oportunidad de profundizar, a través de un estudio cualitativo, en la implementación de la ENIPG-S en un área de salud determinada. Elegimos salud sexual y reproductiva en mujeres gitanas por ser un desafío que despierta gran interés tanto en la intervención como en la investigación. No obstante, podríamos haber elegido otros problemas de salud tradicionalmente más olvidados en esta población y que son esenciales de abordar (e.g., salud visual y auditiva). Inicialmente, esta tesis surgió con la tarea encargada por la IOM para evaluar la implementación de la ENIPG-S en España para el proyecto Equi-Health. Sin embargo, la estrategia no fue realmente implementada hasta la publicación de su Plan Operativo—posterior a la recogida principal de datos de este estudio. Esto, unido a la escasa literatura sobre la implementación y evaluación de políticas de salud dirigidas a PG en España, ha limitado la aproximación a la evaluación de la ENIPG-S desde las evidencias. Como consecuencia, en nuestro estudio se ha dado más peso a las narrativas de los agentes y a su experiencia durante la implementación de dicha política y otros compromisos nacionales para la superación de las inequidades en salud de la PG. De manera opuesta, a la hora de enmarcar el problema de la salud de la PG en España, nos hemos decantado principalmente por informes y artículo científicos publicados. Indagar sobre este tema durante las entrevistas con los agentes de la plataforma nos
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4 ACRONYMS ASPCAT Public Health Agency of Catalonia (Agència de Salut Pública de Cataluña) CatSalut Catalan Healthcare Service (Servei Catalá de la Salut) AACC Autonomous Communities (Comunidades Autónomas) CBO Community-based organization CESPYD Coalition for the Study of Power, Health and Diversity CSO Civil Society Organizations DG Directorate General DG SANCO European Commission’s Directorate General for Health and Consumers DRI Decade of Roma Inclusion EC European Commission EU European Union IOM International Organization for Migration MIPEX Migrant Integration Policy Index NGO Non-Governmental Organizations NHS National Health System (Sistema Nacional de Salud) NRIS National Roma Integration Strategy PHC Primary Healthcare RDL Royal Decree-Law (Real Decreto Ley) RIPEX Roma Integration Policy Index SAS Andalusian Healthcare Service (Servicio Andaluz de Salud) ToR Terms of Reference of the Equi-Health project TRHP Transformative Roma Health Policies VIP Voluntary Interruption of Pregnancy WHO World Health Organization 58
5 EXECUTIVE SUMMARY Introduction Building collaborative capacity among stakeholders in order to develop transformative Roma health policies In February 2013, the Migration Health Division of the Regional Office for Europe and Central Asia of the International Organization for Migration (IOM) launched the project “Equi-Health: Fostering Health Provision for Migrants, the Roma and Other Vulnerable Groups.” Equi-Health´s sub-action “Roma Health” seeks to improve the accessibility, adequacy, adaptability, satisfaction with and the quality of health assistance, preventive care, and health promotion services for Spanish and foreign (EU and third country nationals) Roma. The first stage of this project focuses on elaborating progress reports from a multi-stakeholder perspective on the implementation of the National Roma Integration Strategy (NRIS) and other national commitments with respect to Roma Health. The Roma are one of the largest minorities in Europe and the main ethnic group in Spain. Roma health is a challenge that is extremely difficult for European society to tackle. The isolation, discrimination, and poverty in which many of them live are unacceptable sources of inequity that have been in place for hundreds of years. In order to tackle this problem, in 2005, the European governments committed to a Decade of Roma Inclusion (DRI; 2005-2015) to “combat discrimination, poverty, and exclusion against the Roma population, and to reduce the unacceptable gaps between this population and the rest of society in education, housing, employment, and health.” A few years later, the World Health Organization’s (WHO) programme, Health 2020, provided a new framework for understanding public health in Europe as a response to the gaps in health caused by the economic crisis. However, in 2010 the European Commission (EC) elaborated a report on the Economic and Social Integration of the Roma in Europe (European Commission, 2010a), which evidenced the relative failures of these efforts, such as the existing gap between planning and implementation, the weak inclusion of strategies at different levels, the low participation of the Roma community, the inadequate use of funds, etc. These assertions imply the acknowledgement that the Roma people’s health inequities are a ‘wicked problem,’ that is, a problem that is extremely difficult to broach and solve (Rittel & Webber, 1979). Indeed, the chronic failure of existing policies intended to put an end to the Roma inequities may be explained by the fact that (a) Roma health has never been considered or defined as a social problem; (b) the political concern around Roma health has not translated into effective policies; and (c) the complexity of the problem does not derive from scientific but political and social difficulties which would require building collaborative capacity among all stakeholders to solve it. We need to find innovative strategies to actively engage all the stakeholders in the design, implementation and assessment of Transformative Roma Health Policies (TRHP). Collaboration among the different stakeholders must be part of a permanent and proactive process of transformation to constantly shape the problem, as well as the strategies and actions implemented to solve it. Furthermore, stakeholder involvement needs to be implemented as a process of community mobilisation for building collaborative capacity among all stakeholders, leading to the development of shared understanding, and collective commitment and action for the future (De Freitas et al., 2014). 59
6 This report is the result of the work done by Spanish consultants to tackle the challenge of ensuring the equity of health policies for the Roma population, adopting the viewpoint of the different stakeholders involved while developing their capacity for collaboration and producing shared understanding of the problem (Petersen et al., 2012). This report is organized in the following chapters: (1) Framing the problem, (2) Building and releasing collaborative capacity to transform, (3) Promoting shared understanding from evidences and stakeholders and (4) Planning the future. Framing the problem According to official data, the population of Spain is currently 47,129,783 people. Out of the total population, between 700,000 and 970,000 people (1.5% - 2.1%) are Roma, making Spanish Roma the biggest ethnic minority in the country (Fundación FOESSA, 2008). The Roma population is diverse and heterogeneous, and there are clear differences between national and foreign Roma. Nevertheless, there are also commonalities between them - for example, location, demography, and family structure. The health of national Roma has improved in recent years thanks to housing improvement, the implementation of universal healthcare, the rehabilitation of marginal areas, and the expansion of compulsory schooling (Fundación Secretariado Gitano, 2012; Laparra et al., 2012). In spite of all this, work still needs to be done in order to reduce the social determinants and health inequities between the general population and the Roma minority, and between national and foreign Roma. The national Roma population has a more negative view of health, worse eye and ear health, and more traffic and domestic accidents than the rest of the non-Roma population. Some Roma children are not vaccinated, do not get regular paediatric check-ups, and have a deficient or unbalanced diet. Adults do not utilise preventive services and are more prone to suffer from cardiovascular, bone, joint, and chronic diseases. In particular, women tend to suffer from obesity, they make fewer periodical visits to the gynaecologist and suffer more mental health problems than that of the rest of the Spanish population (La Parra, 2009; Laparra, 2007, 2011; Ministerio de Sanidad y Consumo & Fundación Secretariado Gitano, 2007). Although there is no reliable information about the health of foreign Roma living in Spain, several inferences can be made on the basis of data obtained in their countries of origin (Hajioff & McKee, 2000; McKee, Balabanova & Steriu, 2007; Parekh & Rose, 2011). Their life expectancy is 10 to 15 years lower than the rest of the population in their countries, with higher mortality rates among young adults and children. Many of them suffer from malnutrition and infectious diseases, as well as alcohol and drug abuse. The number of people with psychiatric or mental disorders is six times greater than in the rest of the population, and there are higher rates of teenage pregnancies, which increase child vulnerability. There has been an increase in the mobility of citizens from Eastern Europe since Bulgaria and Romania formalised their membership in the European Union (EU) in 2007, together with a waiver visa policy for Western Balkans’ citizens (McKee, Balabanova & Steriu, 2007). This, together with the rise of xenophobic policies in EU member states such as Italy or France 3 , has made of Spain a preferred destination for many of the Roma population from Eastern European countries. Their arrival has become a challenge to human rights, and a possible risk for 3 El ministro del Interior francés arremete contra los gitanos, El País, September 2013 http://internacional.elpais.com/internacional/2013/09/24/actualidad/1380022331_876484.html 3 Miles de gitanos protestan en Roma contra la xenofobia, El País, June 2008 http://internacional.elpais.com/internacional/2008/06/08/actualidad/1212876007_850215.html 60
7 public health, since they get here in very precarious conditions and with no chances of finding a job: they do not have or look for housing and many of them live in temporary and unsanitary settlements where the same subhuman conditions of their countries of origin are replicated. Persecuted and stigmatised for their vulnerability, their precarious health condition contributes further to their marginalisation, creating new risks and suffering. To put an end to these inequalities, in April 2011 the European Commission adopted the EU Framework for NRIS up to 2020 (European Commission, 2011), by which EU countries committed to revising existing strategies and to developing new ones in order to improve Roma inclusion in European societies with respect to education, employment, housing and health. By 2012, each EU member state had elaborated a National Strategy (European Commission, 2012) intended, on the one hand, to complement and reinforce the EU's equality legislation and to support policies and authorities at the national, regional, and local levels in monitoring, sharing, and strengthening effective and comprehensive approaches to Roma health; and, on the other, to build a coherent network to promote dialogue and participation among all key stakeholders and to delineate strategies and interventions to support capacity building and cooperation in order to address the specific needs of Roma. In Spain, the NRIS was developed by the Ministry of Health, Social Services, and Equality (Ministerio de Sanidad, Política Social e Igualdad, 2012b) and implemented through the Operational Plan (Plan Operacional; 2014-2016) (Ministerio de Sanidad, Política Social e Igualdad, 2013a). Concerning adults’ health, the targets are to improve the perception of the health status of the Roma population and to reduce traffic accidents and smoking. Special attention is also given to reducing obesity among women and to reducing the number of women who have never gone to thegynaecologist. In relation to child population, the NRIS aims to reduce the number of children suffering domestic accidents and increase oral healthcare. The key areas of NRIS implementation are: (a) promoting policies and actions aimed at reducing health inequalities, (b) reorienting health services towards equity, (c) fostering health promotion throughout the life course, (d) establishing mechanisms to ensure positive impact on Roma health, (e) promoting Roma participation, (f) promoting intersectoriality and (g) supporting and promoting diversity training. Building and releasing collaborative capacity to transform Transformative policy change requires that new policies are both evidence and a discursive, building policies based on the values and participation of all stakeholders (De Freitas et al, 2014; Nelson, 2013). Regarding the evidence-based approach, the expert team conducted desk research including literature review, legal review and policy research. The researchers further collected data and combined information from various sources in order to obtain the most comprehensive overview of the foreign and national Roma population of Spain, and more specifically in the Autonomous Communities (AACC) of Andalusia and Catalonia. To carry out the discursive approach, a coalition or stakeholders network was constituted in order to build collaborative capacity among them. The coalition comprised representatives of organizations with relevant role in the field of Roma health. Assuming a systemic view, policymakers, managers, healthcare providers and users’ representatives were invited to join the coalition. A new tool, the RIPEX (Roma Integration Policy Index) was developed in order to analyse and integrate the results of the stakeholder interviews and the information obtained in the desk review. This index was promoted by the network set up in Equi-Health to assess and contrast how sensitive 61
8 health policies are towards the Roma population. The indicators were selected from the WHO’s assessment recommendations for the health element of the NRIS, the MIPEX (Migrant Integration Policy Index) and those required by the IOM in the Equi-Health´s Terms of Reference. The resulting RIPEX categories and indicators used in this report are: (a) Entitlement to Healthcare (Requirements for obtaining entitlement, Co-payments, and Coverage); (b) Access to Healthcare Services (Accessibility barriers, Consequences, Policies and strategies to suppress accessibility barriers, and Roma health mediation); (c) Responsiveness of Healthcare Services (Health inequalities defined in the NRIS, Policies to make healthcare services more sensitive, and Adaptation strategies of healthcare services and providers); (d) Achieving and Sustaining Change (The political and economic context of the NRIS, Associationism, collaboration and participation of the national and foreign Roma community, Collaborative work among multiple, and Promoting inter-sectoral action). Promoting shared understanding to transform Roma health policy Regarding entitlement to healthcare, the NRIS in Spain and its Operational Plan are based on the universalisation of the National Healthcare System (NHS). However, recent cutbacks and changes in the Spanish healthcare legislation have led to the dismantling of the system and some of its core elements. All these have affected both the national and foreign population—Roma and non- Roma—as well as the implementation of the NRIS. This new healthcare model has worsened the low socio-economic conditions of most vulnerable people, especially the foreign Roma. Moreover, paperwork to obtain a Health Card involves bureaucratic procedures and additional documentation that are further barriers for the Roma population. As a response, some AACC such as Catalonia and Andalusia, have developed strategies to ensure healthcare access for those excluded from the system by the law. Nevertheless, many challenges are still threatening the entitlement of the Roma to healthcare. The NRIS establishes the accessibility to the healthcare system as one of the strategic lines of action to improve Roma health. National and foreign Roma have developed non-normative patterns of access to and use of healthcare services due to their historical marginalization and persecution; the bad public transport connection between their neighbourhoods and settlements with healthcare services; and the blindness of the healthcare system about the Roma culture, among others. To overcome these challenges, national and regional governments have developed policies to ensure healthcare access. Healthcare centres have also developed strategies to facilitate access (e.g., specific health programs and committees, information points). However, the most effective actions have been conducted by healthcare providers and social workers from civil society organizations (e.g., by taking part in community interventions and commissions with several other agents in the area, accompany programs, developing alternative ways to access, etc.). In this undertaking, the health mediation processes play a central role in enhancing Roma’s accessibility to medical services, while also improving the health of this community and bringing the NHS and communities closer. The NRIS and its Operational Plan cover responsiveness of healthcare services as a relevant subject through objectives aimed at reducing specific Roma health inequities and strategic lines of actions. However, attention has been drawn to some NRIS limitations - its focus on the national Roma population, its exclusively biomedical perspective, and the fact that its objectives are neither interconnect nor integrated with other policies and strategies of the NHS. Nevertheless, some efforts have been made to make the systems and its services more responsive towards the Roma 62
9 community. At policy level, there are regional and national plans to culturally train providers. Also, reports and guides about Romma health have been published and some healthcare campaigns have been culturally adapted. This is complemented by the adaptation of general protocols by some healthcare providers working in centres with high rates of Roma users. Other revisions are related to communication, balancing assistance with their religious beliefs, economic situation, etc. There are also other adaptations that demand great effort from providers, subsequently causing burnout. Such adaptations include adopting a more proactive attitude and having constantly monitor and locate Roma users. To achieve and sustain change, the NRIS and the Operational Plan intend to enhance Roma health through administrative cooperation and stakeholders’ participation. To achieve this, certain challenges should be taken into account. For example, the NRIS is being ineffectively implemented due to the current economic and political context in Spain. Moreover, the strategy is not sufficiently publicised and its implementation entails conflicts of interests among different institutions and bodies at different levels. The Roma are little engaged in policy planning and implementation, and there exists institutional discrimination among them. On the other hand, national Roma and their associations do not sympathise with, and even discriminate against, foreign Roma, who also lack forms of associationism. Besides, there is lack of international cooperation and networking among stakeholders. All this entails a progressive bureaucratization of Roma associations, which can hinder the construction of a solid system to encourage all Roma sectors to take active part in the process of improving their health status. Planning the future In order to achieve quality Transformative Roma Health Policies (TRHP) development and implementation, we must take into account that these are the outcomes of an innovation process that put into practice both evidence-based and discursive approaches. Hence, building TRHP from a multi-stakeholder perspective would be one thing, and implementing them would be another (Frank & Atkins, 1981; Meyers et al., 2012). When planning the future, some challenges may arise, such as the lack of common and shared interests and goals, unrealistic expectations, the lack of evaluation, communication and organizational barriers, segmentation of the network, unbalanced power relations, resistance to change and maintaining the status quo, lack of resources, etc. (Suarez-Balcazar et al., 2007). Bearing this in mind, TRHP from a multi-stakeholder perspective should follow principles to guide the development and implementation of Roma health priorities through specific community tools. The principles of TRHP would be: (1) to seek the effective involvement of multiple stakeholders in participatory mechanisms by building collaborative capacity; (2) to be based on health in all policies and intersectoral actions for health; (3) to better monitor and report progress, and to develop evaluation capacity among stakeholders; (4) to redefine the role of policy promoters; (5) to advocate for the elimination of institutional discrimination; (6) to assure cultural competence among stakeholders; (7) to institutionalize health mediation; and (8) to promote Roma health literacy. The TRHP priorities identified during stakeholder interviews and coalitions entail: (a) strengthening entitlement to healthcare (e.g., protecting national and European health rights, reviewing administrative procedures to obtain the Health Card, etc.); (b) assuring accessibility to the healthcare system (e.g., denouncing human rights, distinguishing access and accreditation with 63
10 care, reviewing formulas to access, increasing health mediation processes, etc.); (c) promoting responsiveness in healthcare services (e.g., including foreign Roma in the NRIS, developing a culture of care and a vision of community health, health in all policies, increasing diverse staff and health mediators, disseminating good practices, etc.); and (d) achieving and sustaining change (e.g., strengthening the Roma associative movement by promoting collaborative work, giving Roma a central role, employing community resources and methodologies, fostering criticism among Roma associationism, improving the viability of the NRIS—a higher budget would contribute to further the dissemination, commitment and sustainability of the strategy). TRHP development and implementation follow an ecological approach, relying on continuous innovation by which stakeholders “learn by doing”, and making ample use of emerging technologies such as online platforms. The use of these platforms, such as the creation of a Roma Tool Box, would allow to work in an exchange network that allows connecting multiple stakeholders at local and global levels who are engaged in transforming and building healthier Roma communities. Moreover, it would be an excellent support infrastructure that would provide opportunities for building capacity systems for change, ensuring the success of intervention and evaluating those within an open system environment. 64
11 1. INTRODUCTION BUILDING COLLABORATIVE CAPACITY AMONG STAKEHOLDERS TO DEVELOP TRANSFORMATIVE ROMA HEALTH POLICIES In February 2013, the Migration Health Division of the Regional Office for Europe and Central Asia of the International Organization for Migration (IOM) launched the project “Equi-Health: Fostering Health Provision for Migrants, the Roma, and Other Vulnerable Groups.” Equi-Health´s sub-action “Roma Health” seeks to improve the accessibility, adequacy, adaptability, satisfaction with and quality of health assistance, preventive care, and health promotion services for national and foreign Roma—EU and third country nationals. The first stage of this project focuses on elaborating progress reports from a multi-stakeholder perspective on the implementation of the National Roma Integration Strategy (NRIS) and other national commitments with respect to Roma Health. This report describes the activities of the Coalition for the Study of Health, Power, and Diversity (CESPYD 4 ), the Centre of Community Research and Action at the University of Sevilla, and the Public Health Agency of Catalonia (ASPCAT) as national consultants for the elaboration of the progress report on the NRIS in Spain. In this introductory chapter, we describe the background on the health challenges faced by the national and foreign Roma community in Spain. Then, the reasons for the failure of previous policies are analysed, followed by a rationale for the adoption of a perspective to build collaborative capacity among the different stakeholders to face these challenges. 1.1. Background Roma health remains a difficult challenge for European society. The conditions of isolation, discrimination, and poverty in which many Roma people live represent an unacceptable source of inequity in Europe. This situation represents the secular oppression that Roma have suffered ever since arriving in Europe from the Punjab region in India in the Middle Ages, when they were mistenly called gypsies as it was thought they come from Egypt. In Europe, which was then controlled by the Catholic Church, the Roma were soon persecuted for heresy, as they engaged in practices such as divination and chiromancy. As a matter of fact, it was the prestige that they soon gained as artists, musicians, storytellers, and magicians that made the Catholic Church fear losing its control over an ignorant and superstitious society (Strochlic, 2011). In 1554, being Roma was punished with death penalty in England if they had not left the country and, hundred years later, 15 European countries enforced laws intended to secure the deportation of Roma people and the annihilation of their communities. These laws forced them to adopt a travelling way of life (Strochlic, 2011). In Spain, the history of Roma oscillates paradoxically between repudiation and fascination as well. Repudiation comes from them being seen as thieves and liars; fascination arises from the sensitivity and profoundness of their music, their dance, and their artistic talent – for example in bullfighting. This paradox is reflected in the norms and laws enforced in Spain since Roma entered the peninsula through the Pyrenees and coming from Africa through the Strait of Gibraltar. At first, the Roma were welcome and protected. Later, they were expelled and forbidden to speak their language and to maintain distinguishing traits. After Franco's death, racial discrimination became a criminal offense, and the regulations of the Guardia Civil regarding the surveillance of and control over Roma customs and ways of life were revoked (FAKALI, 2013). 4 www.cespyd.es 65
12 Between 12 and 15 million Roma currently live in Europe, of which around 10 million live in the EU. These figures indicate that in some countries the Roma population is an important part of the total. For example, the Roma represent 10% of the total population of Bulgaria, 9% of the population of Slovakia, and 8% of the population of Romania. Furthermore, the Roma population is the poorest ethnic minority in Europe. They are ten times poorer than the rest of the population and their life expectancy is about 15 years lower than that of the average European citizen (Parekh & Rose, 2011). In Spain, it is estimated that 77% of the Roma population live in relative poverty–with 37.5% living in extreme poverty, compared to 37.2% in Bulgaria—where 80.1% live on less than USD 4.30 a day, and 43.1% in Romania—where 68.8% live on less than USD 4.30 a day (Fundación Secretariado Gitano, 2012). In spite of the fact that Roma have lived in Europe for nearly a thousand years, they are still seen as foreigners and prejudice against them is deeply rooted in the whole continent. Segregation prevails in many countries and Roma people are constantly forced to move and to settle in the peripheries of urban centres or in segregated areas with no social services and where they suffer constant discrimination, poverty, and police brutality. Authorities tend to see delinquency and unemployment in Roma communities as irremediable ethnic problems and these are then used to perpetuate and justify the cycle of segregation and persecution (Strochlic, 2011). 1.2. Failure of European responses The determination to expand the EU offered the opportunity for the European Commission (EC)– together with the Open Society Foundation and the World Bank—to organise the conference “Roma in an Expanding Europe: Challenges for the Future” in 2003 to raise awareness of the need to implement policies that enable the integration of Roma in European societies. Roma leaders, government representatives from Central and Eastern Europe as well as other international leaders were invited to this conference, where emphasis was placed on five fields of action: discrimination, education, employment, housing, and health. Moreover, fighting poverty and adopting a gender perspective became transversal concerns. In this way, participating countries committed to inaugurating a new decade, starting in 2005, to promote policies of inter-sectoral integration. Consequently, the Decade of Roma Inclusion 5 (DRI; 2005-2015) emerged as the first political commitment among some European governments 6 to “combat discrimination, poverty and exclusion against the Roma and to reduce the unacceptable gaps between this population and the rest of society in education, housing, employment and health.” In order to achieve this, governments were urged to: (a) reallocate resources; (b) elaborate national and regional plans in collaboration with social organisations and the Roma community, involving them in the decisionmaking and experience-sharing process; and (c) adopt an accountability approach to measure the real impact of their actions. More specifically, member states that endorsed the DRI reached the following conclusions during their 23rd International Steering Committee meeting in Zagreb in 2012: (1) the complexity of the problem requires that the final step in the project be effective transformation and implementation of fair and inclusive healthcare policies; (2) policies must be more sensitive to the values, discourses and narratives of Roma communities and implicate all the agents involved (e.g., citizens, social networks, researchers, government representatives and other 5 Decade of Roma Inclusion 2005-2015 http://www.romadecade.org/ 6 Participating countries in the DRI: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, the Czech Republic, Hungary, Macedonia, Montenegro, Romania, Serbia, Slovakia and Spain. 66
13 influential groups); (3) it is necessary to legitimise politically the Roma population, not only as service users, but also as political subjects that contribute to the health of society as a whole. In this same vein, the World Health Organization’s (WHO) programme Health 2020 7 emerges as a new framework for understanding public health in Europe, and as a response to the gaps in health created by the economic crisis. It draws attention to the need to support and promote participation, leadership and collaborative action between governments and civil society in order to improve the health and wellbeing of citizens, reducing health inequities and strengthening the public health system to be people-centred, universal, equitable, sustainable, and with quality. In order to reach these objectives, Health 2020 is committed to develop strategic thinking for: (a) implementing whole-of-government and whole-of-society approaches that consider health and wellbeing as a shared responsibility; (b) tackling inequities and the social determinants of health; (c) innovative leadership and capacity for health and development; and (d) citizen empowerment. However, in 2010, the EC elaborated a report on the Economic and Social Integration of Roma in Europe (European Commission, 2010a) which made clear the progressive deterioration of Roma living conditions, notwithstanding the aforementioned policies. The general failure of these initiatives has been due to a wide range of factors such as the gap between planning and implementing measures; the weak inclusion of strategies and bottlenecks at the national, regional and local levels; the lack of economic resources and inadequate use of EU funds; the low participation of Roma community in the development and implementation of policies; the deficient support, commitment and leadership of institutions and stakeholders involved; and the low impact of the programme on public opinion and the media (European Commission, 2010a; McKee, Balanova & Steriu, 2007; Parekhm & Rose, 2011). 1.3. Roma health inequities as a ‘wicked’ problem Due to its intersectional nature, Roma health inequities represent a “wicked problem” - that is, a problem that is extremely difficult to broach and solve (Rittel & Webber, 1979). Indeed, the fact that policies to that end are so few and so largely unsuccessful may be explained as follows (Commonwealth of Australia, 2007; WHO, 2012a): Roma health has never been considered or defined as a social problem. In fact, it is a problem that is difficult to define in a clear and durable way. Its nature and extension depends on who defines it –whether it is healthcare service providers, the communities themselves or policymakers—and not on objective and stable causes. The disagreement that exists among the agents involved in its definition does not derive from whether the analysis is wrong or right, but rather from the dimensions that are emphasised, underlined and prioritised. The political concern around Roma health has not successfully taken form into effective policies on the ground but only at a rhetorical level. Moreover, many of the policies have had unforeseen and even paradoxical consequences. This is due to the fact that the circumstances of the problem are unstable and different in every country. Furthermore, its solutions are not verifiable in terms of right and wrong, but rather in comparative terms: solutions that are better or worse than others. As a consequence, it must be accepted that the problem will never be completely solved. 7 Health 2020 http://www.euro.who.int/en/health-topics/health-policy/health-2020-the-european-policy-for-health- and-well-being 67
20 At the same time, foreign Roma arrivals have become a challenge to human rights, and a possible risk for public health, since when these Roma get to Spain in very precarious conditions and with no chances of finding a job, many of them are forced to live in shanties, in temporary and unsanitary settlements where the same subhuman conditions of their own countries are replicated. Consequently Roma people are subjected to extreme forms of discrimination and segregation, and are often confined to ghettos with no access to social or healthcare services. The precariousness of their settlements, together with their extreme poverty, makes them vulnerable to many health risks. Furthermore, the situation is getting worse now, since constant evacuations lead families to stop devoting their time and efforts to build safer shanties and settlements, as they know these will be soon destroyed. They sleep in tents that are packed up in the morning, when they leave the place in order to go begging or collecting scrap metal for the day. Persecuted and stigmatised for their vulnerability, their precarious health condition contributes further to their marginalisation, creating new risks and suffering. 2.3. The EU response to Roma health inequities The progressive deterioration of health conditions and access to health services of Roma population, together with the failure of policies aimed at reducing these inequities, drove the attention to the need of fostering further collaboration among EU member states. Thus, in April 2011, the EC adopted the EU Framework for National Roma Integration Strategies (NRIS) up to 2020 (European Commission, 2011), by which EU countries committed to (a) complementing and reinforcing the EU's equality legislation and as well as supporting policies and authorities at national, regional and local level in monitoring, sharing and strengthening approaches to Roma health, education, employment, and housing; and (b) building a coherent network to promote dialogue and participation among key stakeholders and to delineate strategies and interventions to support capacity building and cooperation in order to address the specific needs of the Roma. By 2012, each EU member state had to elaborate a National Strategy included in the document entitled A First Step in the Implementation of the EU Framework (European Commission, 2012). Later in 2013, the EC drafted the document Steps Forward in Implementing NRIS (European Commission, 2013), which established the necessary requirements for each EU country to achieve Roma inclusion in the different areas mentioned above. Regarding health, the NRIS’s aim is to make possible for Roma people to access quality healthcare, preventive assistance and social services in the same conditions as the rest of the population, placing the focus on women’s and children’s health. Also, it sought the participation of qualified Roma in their communities’ health programmes. More specifically, EU members were advised to: (a) extend health and basic social security coverage and services; (b) improve the access of Roma, alongside other vulnerable groups, to basic, emergency and specialized services; (c) launch awareness raising campaigns on regular medical checks, pre- and postnatal care, family planning and immunization; (d) ensure that preventive health measures reach out to Roma, in particular women and children; and to improve living conditions with focus on segregated settlements (European Commission, 2012). The Spanish NRIS was developed by the Ministry of Health, Social Services, and Equality (Ministerio de Sanidad, Política Social e Igualdad, 2012b). This document adopted the objectives and suggestions made by the EC, aiming to improve Roma health status and to reduce the social inequalities in health with differentiated targets for adults and children. Concerning adults’ health, the targets are to improve the perception of health status of the Roma population and reduce 74
21 traffic accidents and smoking. Special attention is also given to reducing obesity among women and to reducing the number of women who have never gone to the gynaecologist. In relation to the child population, the NRIS aims to reduce the number of children suffering domestic accidents and increase oral healthcare. In 2014, an Operational Plan (Plan Operacional; 2014-2016) was approved in order to implement lines of action to achieve the objectives proposed by the Spanish NRIS. These are: (a) promoting policies and actions aimed at reducing health inequalities, (b) reorientation of health services towards equity, (c) fostering health promotion throughout the life course, (d) establishing mechanisms to ensure the impact on Roma health, (e) promoting Roma participation, (e) promotion of inter-sectoral work, (f) support and promotion of diversity training, and (g) cultural adaptation of resources (Ministerio de Sanidad, Política Social e Igualdad, 2013a). 75
22 3. BUILDING COLLABORATIVE CAPACITY TO TRANSFORM As discussed above, transformative policy change refers to policy changes that are rooted in the available scientific evidence together with the vision of multiple stakeholders and their values, thus providing real capacity to influence in the decision making process. According to the principles stated in the introduction, this requires the new policies to be based both on an evidence-based approximation—that is to say, the policies must be informed by evidence-based scientific research; and on a discursive approach—which means building policy as a process based on the values and participation of all stakeholders (De Freitas et al, 2014; Nelson, 2013). In this section, we first provide the methodology employed in this report: a systematic review of the literature and the creation of a coalition. After that, we present the tool used to analyse and discuss the collected information. 3.1. Evidence based approach: systematic review The desk research has been an on-going process throughout the preparation of this report. It was organized following the Community Guide on Systematic Review Methods 13 . This consisted of literature review, legal review and policy research collecting data and combining information from various sources in order to obtain the most comprehensive overview of the foreign and national Roma population in Spain, and more specifically in the AACC of Andalusia and Catalonia. We focused our search on information on the period between 2005 and 2013. To carry out the desk research we first searched the international databases MEDLINE, PubMed and Google Scholar using keywords such as “health,” “Roma,” “gypsy,” “Spain,” “policies,” “strategies” both in English and Spanish. Next, we did a comprehensive search using websites pertaining to departments of health—national and regional, different Roma CSOs’ websites, sources of information provided by Equi-Health, and so on. Out of the total of publications found, we selected the most relevant documents (Annex 1) that fit within the analytical framework (Figure 1) proposed by the WHO’s Potential Criteria for the Review of the Health Component of the NRIS (WHO, 2012a). Figure 1: Analytical framework to assess evidence based approach 3.2. Discursive approach: key stakeholder involvement To carry out the discursive approach a coalition or stakeholder network was constituted in order to generate collaborative capacity building among them. Collaborative capacity allows us to study stakeholder networks as multicultural empowering settings (Box 1). 13 Community Guide on Systematic Review Methods http://www.thecommunityguide.org/about/methods.html 76
23 Box 1: Stakeholder network as multicultural empowering settings An empowering community setting is understood as a community-based structure which facilitates development of the members, community betterment and positive social change (Paloma, Garcia- Ramirez, de la Mata & AMAL, 2010). These settings are characterized by the following features: Figure 2: Stakeholder network as multicultural empowering settings 1. Capacity to adopt a shared mission, embracing equality and diversity as values; recognizing diversity of origin, cultural and linguistic experiences; assuming models of services and care based on the individual; acknowledging the specific needs generated by being of minority status in European society; including reciprocity, compromise, and collaboration as strategic principles. 2. Adaptation of services and organizational processes (policies, standards and procedures) to the needs of the multicultural collective group; probing and sharing evidence and best practices that integrate knowledge, the view of multicultural populations users of services; and developing evidence-based practices. 3. Promote horizontal and reciprocal relationships, by including users of services and representatives from other community agencies in the decision making process in the organizations; establishing strong partnerships with universities; and fostering the exchange of ideas and multicultural events among multicultural communities, community settings and providers. 4. Create capacity to engage different roles, encouraging diversity among members; identifying cultural mediators, community gatekeepers, volunteers, and including spiritual and cultural healers. 5. Promote leadership among members who are pluralistic, multicultural individuals, capable of equally representing the needs and views of all constituents and relate with ease with multicultural communities. 6. Secure quality and systems change, instead of pursuing a quick fix approach to addressing changes in services, focus on pursuing long-term social change, seeking to maintain the quality of services and protecting changes to policies and practices that support multicultural populations. To assure the stakeholder participation in the elaboration of the report, the Spanish Equi-Health coalition included representatives of organizations with relevant role in the field of Roma health (Figure 3; Annex 2). Assuming a systemic view, policymakers, managers, healthcare providers and end-user representatives were chosen. Other participants include members of research groups and representatives of institutions, organizations and associations working in healthcare for Roma 77
24 people in Andalusia and Catalonia. Moreover, and due to its European context, several European stakeholders have contributed to this report, including representatives of the IOM, the EC, the ADAPT project, which belongs to the European Cooperation in Science and Technology research network (COST); and the WHO. Stakeholders from other countries involved in the Equi-Health action (i.e., Bulgaria, Croatia, Slovakia, Belgium, Czech Republic, Romania, Italy, and France) also took part. Figure 3: Spanish Equi-Health Coalition The discursive approach was organized in the following way: First, two initial coalition meetings were organized in Sevilla and Barcelona in February and March 2014—respectively—in which the Equi-Health project was presented, key stakeholders were invited to participate both in the coalition and the report, and first discursive data was collected. After that, stakeholders were individually interviewed during March and April, 2014. National consultants drew the interview guideline (Annex 3) from the indicators set out in the Terms of Reference (ToR) of Equi-Health (Annex 4). In total, 33 interviews—15 in Andalusia and 18 in Catalonia—were conducted by five researchers. These were recorded under the informed consent of the interviewees, transcribed, and qualitative analysed by two researchers using the software ATLAS.ti 5.0 and following the assessment categories and indicators developed by this report (i.e., the RIPEX; see next section). Later in October and November, two new coalition meetings were organized—again in Sevilla and Barcelona—to present the preliminary findings of the report. Stakeholders were also asked to provide feedback on the work done as well as to propose and discuss recommendations and priorities for planning the future in Roma health. This new information has also been incorporated in our report (see chapter 5). 3.3. RIPEX: an NRIS assessment tool A new tool, the RIPEX (Roma Integration Policy Index), was developed in order to analyse and integrate the findings of the stakeholder interviews and coalitions, as well as those obtained in the desk review. This index was promoted by the network set up in Equi-Health to assess and contrast how sensitive health policies are towards the Roma population. It is composed of a series of categories and indicators selected from: (a) the WHO’s assessment recommendations for the health branch of the NRIS, (b) the Migrant Integration Policy Index (MIPEX), (c) those required by the IOM in the Equi-Health project, and (d) the suggestions made by the stakeholders. 78
25 The WHO has elaborated a list of indicators to assess the health content of the NRIS (WHO, 2012a). The criteria used can be grouped in five different areas: (1) coherence with the EU’s and the Council of Europe’s communications; (2) strengthening the health system; (3) social determinants of health; (4) objectives, results and governing mechanisms; and (5) monitoring and assessment. According to the document elaborated by the WHO’s international committee, these criteria are based on the EU Communications and Council Conclusions on Roma Inclusion, the Communication “Solidarity in Health: Reducing Health Inequalities in the EU” and recommendations made by the Council of Europe and the Open Society Foundation’s Roma Health Project. They reflect the policy guidance and evidence base represented by sources such as Article 12 on the right to health of the International Covenant on Economic, Social and Cultural Rights; the work of the Commission on Social Determinants of Health; the emerging findings of the Task Group on Disadvantage, Social Exclusion and Vulnerability of the WHO-commissioned European Review on Social Determinants and the Health Divide; and the Health 2020, among others (WHO, 2012b, p.1). The MIPEX 14 (Migrant Integration Policy Index) is a fully interactive tool and reference guide to assess, compare, and improve integration policy. MIPEX measures integration policies in all EU Member States plus Norway, Switzerland, Canada and the USA up to 31 May 2010. Using 148 policy indicators, MIPEX creates a rich, multi-dimensional picture of migrants’ opportunities to participate in society by assessing governments’ commitment to integration. By measuring policies and their implementation, it reveals whether all residents are guaranteed equal rights, responsibilities and opportunities. MIPEX draft health policy indicators are being elaborated in collaboration with the network ADAPT, whose aim is to develop a series of changes to adapt European health systems to the demands of a multicultural society, placing emphasis on vulnerable groups. It focuses on four sources of variation: (1) entitlement to healthcare services; (2) policies to facilitate access; (3) responsive health services; and (4) measures to achieve change. Regarding entitlement, it involves coverage for different groups, including the most vulnerable ones, affordability and co-payment. With regard to policies to facilitate access, it includes availability of information for providers about the rights of minorities, mechanisms to facilitate communication, measures to reduce the obstacles in access to healthcare and the use of cultural mediators. With respect to responsive healthcare services, it focuses on methods used for interpretation, the creation of culturally competent services, and the involvement and participation of users in the provision of services. Finally, the measures to achieve change include support for research and the adoption of the “health in all policies” approach. Through the Equi-Health ToR (Annex 3), the IOM includes a series of indicators to assess the NRIS. In the case of Spain, these were: (a) barriers in the access to basic, emergency and specialized healthcare services for Roma; (b) social security coverage and existing local solutions to low coverage for Roma communities; (c) process of development and revision, the implementation of national commitments, evaluation/monitoring mechanisms, funding and sustainability, involvement of local authorities and civil society organizations; (d) how national strategies and actions relate to and contribute to EC policies on health inequalities, with particular attention to Europe 2020; and (e) Roma health mediators programme (e.g., implementation, challenges, monitoring, evaluation, sustainability and institutionalisation). 14 Migrant Integration Policy Index (MIPEX) www.mipex.eu 79
26 Consequently, the final RIPEX tool consisted of the following categories and indicators - discussed by the stakeholders in the development of this progress report: Entitlement to healthcare Requirements for obtaining entitlement: this indicator focuses on the formal and informal requirements for national and foreign Roma to access the healthcare system and its services. It includes aspects related to the Health Card application process and other requirements related to forms of identification, registration, and so forth. Co-payments: this indicator deals with the payment system that the Roma population has to use to have access to medical attention. It examines the prevalence of out-of-pocket payments and the cases of exemption from payment (such as low income or chronic diseases). Coverage: it is referred to the list of services to which the Roma population has access. It distinguishes between healthcare coverage for national Roma and that for foreign Roma. Access to healthcare system Accessibility barriers: this indicator determines the different barriers that hinder national and foreign Roma’s access to the NHS and its services. These barriers may be related to the culture of the Roma community or derived from the system itself and its providers, among others. Policies to suppress accessibility barriers: policies developed and implemented by local, regional or national plans intended to tackle accessibility barriers. Adaptation strategies to suppress accessibility barriers: strategies are specific actions developed by providers of healthcare centres or CSOs to eliminate the barriers that hinder the Roma population’s access to healthcare. Roma health mediation: this indicator includes aspects related to the tasks of health mediators working with Roma people. It deals with the training of providers, the collaboration of Roma patients with healthcare services, and so on. Responsiveness of healthcare services Health inequalities identified in the NRIS: including inequities described in the Operational Plan 2014-2016 and their critical review. Policies to make healthcare services more responsive: it includes aspects related to the training in cultural competence of service providers. Adaptation strategies of healthcare services and providers: these are the measures adopted by healthcare providers and some health centres to adapt to the characteristics and needs of the Spanish and foreign Roma population. Achieving and sustaining change The political and economic context of the NRIS: this indicator assesses the healthcare system’s capacity to achieve the objectives of the Operational Plan of the NRIS. The focus is placed on how these objectives are shaped by the current restrictions imposed on the NHS. Associationism, participation and collaboration of the national and foreign Roma community: it describes the relationships between national and foreign Roma, Roma associationism and participation, as well as the collaborative relationships among different organisations and how these contribute to improving Roma health. 80
27 Collaborative work among multiple stakeholders: this indicator outlines the synergies among different organisations and how these contribute to improving the health and wellbeing of the Roma community. These organisations include local, regional and national institutional bodies, healthcare and academic institutions, Roma associations, social organisations and NGOs. Promoting inter-sectoral action: this indicator examines the synergies between the different programmes intended to promote and improve the use of healthcare services within the framework of the NRIS. 81
28 4. PROMOTING SHARED UNDERSTANDING TO TRANSFORM ROMA HEALTH POLICIES In order to take stock of all the challenges and recommendations obtained through the stakeholder interviews and desk research, the chain of evidences will be presented following the RIPEX structure: 4.1. Entitlement to healthcare The NRIS is based on the idea that healthcare assistance in Spain is free and universal for all those who live in the country, regardless of their ethnic origin, their legal or social status. This is the starting point for the Operational Plan of the NRIS for forthcoming years: “for the universalization of the whole system, the priorities are (a) counselling on lifestyles in primary care [...] during pregnancy and lactation [...] and the promotion of the emotional wellbeing of the infant population” (Ministerio de Sanidad, Política Social e Igualdad, 2013a, p. 28). National Roma are entitled to healthcare by virtue of the same legislation that entitles the rest of the Spanish population. In the case of foreign Roma from EU and non-EU countries, the laws that apply are those addressed to the foreign population. However, it is important to outline the healthcare legislative changes that have taken place in Spain since 2012 at the hands of the Government of the Popular Party (Partido Popular) and which represent the main milestones for the implementation of the NRIS in Spain (Box 2). Box 2: Latest changes in the Spanish legislation (1) Article 43 of the Spanish Constitution of 1978 establishes the right to health protection and healthcare assistance of all citizens. Similarly, Articles 1 and 3.2 of the Law 14/1986 on General Health entitles all Spanish and foreign citizens who reside in Spain, applicable to all the Spanish population, to health protection and healthcare assistance. Since then, health insurance for Roma people expanded until they were entitled to healthcare in the same conditions as any other Spanish citizen (Fundación Secretariado Gitano, 2012; Laparra, 2007). (2) This process of universalisation was shaped further with the Law 16/2003 of Cohesion and Quality of the NHS, whose aim was to put forward a new definition of healthcare entitlement, where users are no longer insured by the Social Security System but beneficiaries of the NHS. Article 3 of this law established entitlement to health protection and primary care for: (a) all Spanish and foreign people in Spanish territory; (b) nationals from EU member states that hold agreements with Spain to entitle them to healthcare assistance; and (c) non-EU nationals who are entitled by virtue of laws, treaties and agreements subscribed by both parties. (3) In 2012, the Government of the Popular Party modified the law by approving the RDL 16/2012 on urgent measures to guarantee the sustainability of the NHS. This decree represents a backward movement in the universalisation of the NHS, thus restricting the entitlement of national and foreign Roma as it has modified Article 3 of the Law of Cohesion and Quality of the NHS, eliminating the concept of universal healthcare in favour of healthcare insurance. These changes may affect the implementation of the NRIS and its Operational Plan in Spain. According to this decree, only the following groups are eligible for healthcare insurance: (a) workers affiliated to the Social Security System; (b) pensioners of the Social Security System; and (c) recipients of jobseeker’s allowance and unemployment benefits. Spanish nationals and nationals from EU member states who do not 82
29 belong to any of these groups may be eligible for healthcare insurance if they can prove that their income does not surpass certain established limits. This decree also extends pharmaceutical copayment to prosthetic treatments, dietary products and ambulance services. In the case of foreign Roma, the RDL 16/2012 hinders their access to health services because it limits the entitlement to healthcare of people who are not resident in Spain. Therefore, and in spite of their being EU citizens, these people’s entitlement to health has been considerably restricted, and they are doubly marginalised for being both Roma and immigrants before the law. This decree has also generated obstacles for the national population, as it has eliminated the entitlement to health of those above 26 that have not contributed to Social Security, it has toughened the requirements for disability allowance, it has imposed stricter forms of control of access to medical assistance by means of the Health Card, and it has implemented a pharmaceutical co-payment system. (4) For those who are excluded by this decree, including irregular and unemployed immigrants, the Government passed the RDL 576/2013, turns the NHS into a sort of health insurance company that charges EUR 60 a month for users under 65, and EUR 157 for those over 65. These fees may be raised by the autonomous communities or in accordance with the cost of services. In the same line, Andalusia approved an instruction of the D.G. de Asistencia Sanitaria y Resultados en Salud of Andalusian Healthcare Service (SAS) intended to recognise and secure entitlement to healthcare assistance for irregular immigrants and people with no resources. This instruction establishes that medical coverage for these people will be the same as for those who are covered by the system, that is, they will have access to all the services offered by the SAS. This entitlement will be valid for extendable one-year periods. Furthermore, pharmaceutical co-payment will be 40 per cent for people under 65, and 10% for those over 65. To benefit from these measures, applicants must meet the following requirements: (a) they must be irregular immigrants; (b) they must not come from any of the EU member states, the European Economic Area or Switzerland, or from non-EU countries that have signed agreements with Spain regarding healthcare assistance; (c) they must not be insured by or beneficiaries of the NHS or any other health system; (d) they must be over 18; and (e) they must not have economic resources—although the instruction does not specify thresholds. Also, the documentation required is: (a) an application form; (b) although no form of identification is required, the information provided must be truthful and is liable to be checked; (c) if the applicant has an old Health Card, it should be produced to facilitate the application process; (d) in the case of EU citizens, it is necessary to produce a document issued by their countries of origin confirming that transferral of entitlement does not apply in this case. However, although the Instructions in Catalonia and Andalusia have entitled many excluded people to healthcare assistance, these measures have not prevented the deterioration of the NHS in Spain. There are several evidences collected in international and national reports which emphasize the negative consequences of these changes affecting both national and foreign Roma populations, and creating barriers to the effective implementation of the NRIS (Casino, 2012). Due to their high levels of unemployment, informal economy, and poverty, national and foreign Roma populations have been particularly hard hit by the financial crisis. Indeed, it is the poorest people and those who rely more heavily on public services that are more seriously affected by government cuts. In this regard, there is evidence of direct relationship between the loss of purchasing power of these families and an increase in health problems derived from malnutrition (e.g., gastroenteritis and growth problems and so on), poor sanitation, overcrowding and the impossibility of healthy shopping, 83
36 that they have to issue a Health Card and that they have to assist them, and that’s when they do it.” (Social worker2) “The access depends on the person who is at the entrance of the healthcare centre (…) once we accompanied a pregnant woman and the administrative asked us “how do we know if she is pregnant?” first, she has to pay the bill and then we will know whether she is pregnant or not”. Well, that is not a misunderstanding of the Law...” (Social worker3) “Theoretically, they have to assist them even without a Health Card, but (...) sometimes (...) they make them pay first, telling them that they can claim their money back when they have their Health Card. If we go with them, they are assisted straightaway because we ask them to (...). It all depends on the centre and the person at the reception desk.” (Social worker2) This misinformation results in a deficient application of the rights that ensure access to the NHS for some national and foreign Roma. The providers interviewed maintain that they do not deny medical assistance to anyone even if they are not entitled. In the same line, the Roma Decade Civil Society Monitoring Report 2012 (Laparra et al., 2012) states “the percentage of Roma people that requested medical assistance and did not receive it is similar to that of the general population” which is among the lowest percentages in Europe. The current legislation (see section Entitlement) guarantees access to the NHS and its services for pregnant women, children under 18, and emergency cases. Nevertheless, there are situations in which the lack of information on the law prevents its right application. For example, in some AACC there are inconsistencies and unresolved questions about how to apply the law when dealing with population that is not registered in the census (Fundación Secretariado Gitano, 2012): “Adults not registered in the census may not access the system (...) unless it is an emergency; but it is the person at the front desk who decides what an emergency is and what is not.” (Social worker1) Pregnant women are sometimes only assisted when they have pregnancy-related problems but not in other health situations: “Theoretically, the law says that they have to be offered assistance (...). In the past, there used to be monitoring during pregnancy and the forty-day period after childbirth, but the situation is worse now. (...) For example, a pregnant woman is not offered assistance if she suffers from gastroenteritis or dental problems, all of which may be caused by pregnancy, because the law is interpreted as concerning strictly gynaecological problems.” (Social worker4) In the case of children, the law guarantees that they receive medical assistance under the same conditions as any other Spanish citizen. However, in these cases (i.e., pregnant women and children), the NHS does not cover specialised assistance (e.g., rehabilitation, ophthalmology, otolaryngology, etc.) which is only provided via emergency services: 90
37 “This means that if a child suffers from otitis, she is given everything she needs, antibiotics and so on. However, if she has a perforated eardrum and she has to be seen by a specialist, she can’t.” (Social worker3) 4.2.1.3. Barriers derived from exclusion and marginalisation Historically, the Roma community has suffered discrimination and social exclusion experiences that have been assumed and perpetuated generation after generation. This has given rise to situations of marginalisation and segregation that affect the relations between this community and healthcare services. In the first place, the Roma community does not identify with, no feel represented by, the NHS. Moreover, many Roma distrust and are afraid of healthcare services (Slavkova, 2010): “They are really afraid (...) afraid that their children might be taken away if Social Services believes there is parental negligence (...). So, they think of it as a form of surveillance, rather than as a form of help.” (Mediator2) Similarly, some healthcare providers are often reluctant to work with the Roma community due to prejudices and stereotypes, thus resulting in racist and discriminatory health practices towards the Roma. Secondly, the system disregards the geographical exclusion of its potential users, something that perpetuates the segregation of the most vulnerable sectors of the Roma community. In this way, the geographical location of marginal areas and settlements, together with bad transport connections between these areas with healthcare centres, or the fact that there are no health centres in these areas, create further barriers, preventing these people from accessing the NHS and its services. In fact, these areas and settlements are very rarely the sites of health visits, health prevention programmes or programmes to engage users who have never accessed the system. Some studies (Laparra, 2007; 2011) have found a direct relation between housing difficulties and lack of access to healthcare services, and also between the need to access specialised assistance and difficulty in reaching these services. Moreover, the mobility of the Roma population further accentuates these and other barriers: for example, traveller patients are difficult to monitor because every time they move they need to be assigned with new doctors and new medical records are open. 4.2.2. Consequences of accessibility barriers The main consequence derived from these barriers and the Roma community’s health condition is the fact that national and foreign Roma have developed non-normative patterns of access to and use of healthcare services (Fundación Secretariado Gitano, 2012; La Parra, 2009; Laparra, 2011; Mendez, 2007): “Primarily, what you see is that they don’t keep their appointments, that they use the emergency service a lot and that they don’t generally continue treatments” (Mediator1) As a general rule, Roma people make deficient use of healthcare services because they do not stick to established times, because they find it difficult to continue treatments or to keep their appointments, because they do not go for check-ups, or because they do not follow prevention programmes. Also, this population’s access to services that are not covered by the NHS—preventive 91
38 services such as dental care or eye care—is much lower than that of the general population (Laparra, 2007; Ministerio de Sanidad y Consumo & Fundación Secretariado Gitano, 2007). However, this assertion should be qualified: Roma children use healthcare services more often than adults, although less than the general population; and also Roma children make use of hospitalisation and emergency services more often than of primary care and healthy child programmes (Ferrer, 2003; Sánchez-Serrano et al., 2002). All this leads to increase reliance on emergency services. This overuse has been discussed by some stakeholders, who contend that integrated Roma make rational use of the NHS, the difference with the mainstream population being minimal: “There was time when adults were issued Health Cards if they applied for them. Even back then, they did not use the service more often than they do now, because, in any case, they don’t come here unless they are really, really ill.” (Social worker4) Furthermore, it is stated that the increase in healthcare costs is not exclusively due to service overuse on the part of Roma patients, but rather to the fact that their access has been limited to emergency services: “They don’t incur expenses of public money such as health centres or nursing homes. The elderly are taken care of at home, there is a big family network to tend ill people at home, where care is normally done. If we really did the numbers, we would realise that Roma people spend much less money than other communities.” (Manager4) “Current policies promote a very bad use of emergency services, which are also more expensive than primary care.” (Social worker1) Although Roma people generally do use the NHS, a small ‘upper-class’ of Roma resorts to private healthcare, which provides them with the immediacy, familiarity, and empathy they expect from healthcare service (Cabedo García et al., 2000; Laparra, 2007): “They want to spend their money on that kind of service, but they don’t receive preventive information there.” (Healthcare provider2) 4.2.3. Policies to suppress accessibility barriers In order to ensure that everybody can access the NHS and its services, regional governments, CSOs, healthcare organisations, and providers implement a series of actions and strategies to prevent the exclusion of Roma people from the system. Together with the guidelines elaborated by the Catalonian and Andalusian governments (see Entitlement), which secure access for those excluded by the RDL 16/2012, there are other national and regional policies intended to eliminate these accessibility barriers. For example, at a national level, the Action Plan for the Development of the Romani population (2010-2012) attempted to improve the use of healthcare services, reducing accessibility barriers and improving access to certain specialised services and tests, such as 92
39 ophthalmology and otolaryngology. At a regional level, the Integrated Plan for the Roma Community of Andalusia (1996) intended to expand medical coverage and to guarantee full accessibility by improving the mechanisms of guidance and access, and by promoting Roma patient’s knowledge and use of the system. 4.2.4. Strategies implemented to overcome accessibility barriers From an organisational viewpoint, the NHS and its regional services have a series of mechanisms and strategies in order to facilitate access for the Roma community. For example, there are some specific health programmes that offer assistance to people suffering from tuberculosis or drug abuse, even if they are not registered in the census, as well as committees set up to discuss important health issues and cases of people who are not covered by the system: “In this committee we have dealt with 70 to 80 cases, 90 per cent of which have been approved.” (Policymaker3) Also, both CatSalut and SAS have electronic information points (i.e., Sanitat Respon and Salud Responde) and websites with information concerning healthcare access. However, most of the efforts made to remove accessibility barriers are within the scope of individual responsibility of providers, thus implying a high component of improvisation, voluntarism, ad hoc approaches, etc. which may involve work exhaustion and burn-out. For instance, healthcare providers may accompany Roma patients to the front desk and demand the administration staff to include them in the system even if they are not entitled to health and hence not registered in it: “In order to treat these people, they have to be in the system. Administrative officers may create a conditional medical record (...). There is always a way to do it.” (Healthcare provider2) Social workers also play an important role in Primary Healthcare Centres (PHC) - for example, by taking part in community interventions and commissions with several other agents in the area (Box 4): “We run a community project in order to include families in the system (...). Mediators who know them call me and we meet (...). I accompany them to the reception desk, we do all the paperwork, I clarify things for them.” (Social worker4) Box 4: Community intervention within a Basic Healthcare Area The Santa Rosa Basic Healthcare Area (Santa Coloma de Gramenet, Barcelona) is the responsible for promoting and guaranteeing healthcare attention to the whole population located in the territory (i.e. Sta. Rosa, Raval and Safareigs de Sta. Coloma de Gramenet). In order to do so, the Basic Healthcare Area focus on the community dimension of intervention, detection and health prevention. In this area, there are Romanian Roma disconnected from the PHC Sta. Rosa, in negligence and health risk that only makes use of emergency services through the hospital. Within this group, the Basic Healthcare Area detected in 2006 minors without register in the city council or school, without healthcare card, without vaccinations, and pregnant minors without gynaecological 93
40 monitoring. Facing these challenges, the social workers of this healthcare area, contact the different competent authorities (e.g. NGOs, social services, area of education of the municipality, etc.) to raise awareness about this situation, this creating a commission for the community work in the area. Regarding CSOs, the work of mediators and social workers is key in guaranteeing healthcare access for the national and foreign Roma population. Along this line, alternative forms of access have been created: for example, by elaborating non-official censuses, which allow providers to engage, identify and monitor users in situation of exclusion. Also social workers may certify that a given family or individual is in a situation of exclusion so they can be granted access; or if a family do not have a fixed address, they may be registered in the census under the address of a CSO (López Catalán, 2012): “They manage (...), the social worker in the centre may make a report so that the child that is not registered in the census may have a Health Card in the same conditions as any other child.” (Social worker2) “It is difficult if the person is not registered in the census (...). However, I know of an association in Barcelona whose address can be used if the patient doesn’t have a fixed address.” (Manager3) Health mediation programs are also a very important strategy, as they seek to raise awareness, to empower users and to enhance their autonomy by promoting knowledge about their rights, about how to do paperwork, how to make appointments, and so on: “The idea is (...) that people must know their rights, they must know that they can go to the doctor’s if they are sick, but also that they have to go (...) that this is something that affects all of us (...). I remember the case of a foreign Roma with tuberculosis. We had to convince him to go to the doctor’s in order to prevent all of us from getting it.” (Social worker1) “It is already difficult to get them [Roma population] to go and do prevention and monitoring programmes, things that they don’t do in their own countries. Imagine if we send them to the PHC here and they are denied access (...). What we want is the guarantee that they can go there on their own and that the law is complied with.” (Social worker3) Nevertheless, these alternative forms must be constantly updated or finetuned in order to continue to guarantee access to both primary care and specialised services. Moreover, these strategies and programmes cannot completely eliminate accessibility barriers, leading social workers and users alike to exhaustion or burnout, generating dependence on social services and the collapse of the most sensitive centres. Yet another way to access the NHS is via other systems, such as schools and workplaces. As shown in the case study presented in the section on achieving and sustaining change, participation in job placement programmes and discussion groups did not only allow Roma women participants to be 94
41 trained in occupational health, but it also favoured the creation of alternative forms of access to healthcare services, especially regarding healthy habits, prevention, and promotion programmes. 4.2.5. Roma health mediation An urgent task to improve Roma health equity is to bridge the gap between minority cultural groups suffering vulnerability and the NHS. Health mediation is addressing these challenges in Spain through public institutions participating in policymaking, health centres, and programmes and activities implemented and funded by social institutions (e.g., La Caixa). However, the most successful health mediation actions, programmes, and activities are those implemented by CSOs). These programs often have a localized character, they are organized through a small number of workers or mediators in these associations, and the degree of institutionalization and integration in the NHS is rather limited. Health mediators are both community liaison officers and cultural brokers. They must be acknowledged by the community, share its values, beliefs and practices, and become community mobilisers. They also have to be proficient in medical communication, act as interpreters for the community and promote channels of communication among all social levels. Finally, they must have in-depth knowledge of the community’s needs and strengths and be expert navigators in healthcare organisations and systems (Family Voices, 2009): “They are not translators, they are not doctors, they are not nurses, but they have to be all these things at once.” (Mediator2) Furthermore, health mediators work at different levels: (a) community (e.g., families, individuals, and so on); (b) public services (e.g., schools, hospitals, health centres and so forth); and (c) policymaking institutions (e.g., regional and local governments). The health mediation process seeks to achieve two main goals: in the short term, it seeks to build bridges between the community and healthcare services; in the long term, it aims to bring the community closer to healthcare services. This process consists of seven stages (see Figure 4): Figure 4: Health mediation process 95
42 In the first place, in order to be aware of community needs through the participation of mediators in the community (1), most CSOs develop participant observation, asking different members of the community, listening to their requests, doing photo voice activities and answering the demands of services to develop specific protocols (e.g., the voluntary interruption of pregnancy programme by Unión Romaní). Other examples are the visits paid by Unión Romaní to shantytowns in order to locate unvaccinated children, carry out first aid workshops, and elaborate a contextual census of excluded people. In the same line, members of FAKALI visit schools to contact parents and know about their children’s needs, while VINCLE has created a network to study the condition of foreign Roma 15 . Secondly, in order to work with the community to improve their health at different levels (2), organisations like FAKALI and Unión Romaní promote community revitalisation and autonomy. For example, because they do not intend to be permanent mediators, they encourage Roma users to become mediators —and role models—for their families. Also, Unión Romaní develops programmes and protocols to teach how to navigate in the NHS, how to get children vaccinated, to do paperwork, to buy medicines and shop healthy, and to raise awareness of patients’ rights and responsibilities in healthcare. FAGIC, FAKALI, and Fundación Secretariado Gitano also develop training programmes on healthy habits, reproductive health, nutrition, violence against women, HIV prevention, addictions, and so on. Most organisations accompany families to health centres to ensure access and to facilitate communication with providers. VINCLE and Unión Romaní also provide information and do paperwork for Roma users. In the third place, to navigate and gain acknowledgement among healthcare staff (3), FAKALI and FAGIC organise conferences and meetings in hospitals and PHC where mediators disseminate the results of their work and build critical awareness among staff. Unión Romaní establishes agreements with health centres to help healthcare providers and to get them involved in the association. At the same time, FAKALI attends meetings with regional and national political organisations to secure the role of health mediators as new healthcare providers. Also, they collaborate with social workers in health centres for planning interventions. Finally, most organisations use communication platforms to publicise their work (e.g., websites, reports and papers, among others). In addition, working with healthcare systems to improve the community´s health (4) is done by Unión Romaní - for example, by offering mediation and translation services to healthcare centres in specific situations. FAKALI and FAGIC train health providers in law, cultural competence and knowledge of the Roma population in hospitals and health centres. FAKALI also organises training courses for healthcare students. Finally, some organisations have developed guidelines such as the Handbook for Action in the Area of Health Services with the Roma Community (Fundación Secretariado Gitano, 2006). Furthermore, to make culturally sensitive healthcare services and to increase community health literacy (5), FAKALI and FAGIC create spaces for dialogue, facilitating channels of communication, redefining problems and redistributing power and resources. For example, they have created health coalitions where healthcare providers and the Roma community get together, creating 15 http://www.romest.cat 96
43 local/regional/national networks among multiple stakeholders (e.g., Roma organisations, user representatives and policymakers): “We are going to change the way we work, at least we are going to try, we are going to create a health committee, we are going to invite all Roma women to come and participate.” (Mediator1) Regarding the assessment of the impact of health mediation processes in terms of quality of healthcare and health status (6), formal methods using quantitative and qualitative indicators are not frequently used in health mediation in Spanish organisations. Rather, assessment is generally carried out in a more contextual, participatory, and observational way. For example, through familiarisation with and commitment to the community, its characteristics and needs; also, by being acknowledged by the community and being part of it; finally, by ensuring quality in the mediation process, by facing and adapting to changes, and by being sustainable. Therefore, health mediator training should cover: knowledge about the NHS (e.g., navigation); medical knowledge (e.g., nutrition, STD, smoking, maternal and child health); legal knowledge on health issues; social skills—especially empathy and leadership; cultural competence; and knowledge of the Roma community and their health. Some examples of these courses are Catalonia´s Migration and Intercultural Mediation Health Plan 2008-2012 16 or the Training Course for Roma Mediators “ROMED” 17 (MSPSI, CoE and FSG). Box 5: Highlights of Access to healthcare system The NRIS establishes the accessibility of healthcare services as one of the strategic lines of action to improve Roma health. National and foreign Roma have developed non-normative patterns of access to and use of healthcare services due to the following challenges and barriers: The Roma fear and distrust the systems and its providers due to their historical marginalization and persecution. The NHS disregards the geographical location of marginal areas and settlements where many Roma live. Plus the bad transport connections and the mobility of the Roma population create further barriers to access the NHS. The NHS ignores the Roma culture (e.g., few providers are trained in managing diversity, lack of adaptation of healthcare services and protocols to the Roma population, and deficient channels of communication). The lack of ethnic-related information prevents knowing the exact number of Roma people, which further their invisibility in plans and strategies not developed in accordance with their needs. However, there are some strategies that have been developed in order to ease these accessibility challenges: National and regional policies have been created to ensure access (e.g., the Instructions of Andalusia and Catalonia, the Action Plan for the Development of the Romani population 2010-2012, or the Plan for the Roma Community of Andalusia 1996) Healthcare centres have developed mechanisms and strategies in order to facilitate access for the Roma community (e.g., specific health programmes, committees, information 16 https://obrasocial.lacaixa.es/deployedfiles/obrasocial/Estaticos/pdf/Inmigracion/Mediacio_intercultural_es.pdf 17 ROMED https://www.gitanos.org/actualidad/archivo/60869.html 97
44 points). Providers from healthcare centres and CSOs make a great effort to reduce accessibility barriers (e.g., by taking part in community interventions and commissions with several other agents in the area, accompany programs, developing alternative ways to access, etc.) Health mediation processes carried out by CSOs are the most effective way to enhance the accessibility of Roma population while improving the health of this community. The objectives are to build bridges between the community and healthcare services, as well as to bring the community closer to healthcare services. 4.3. Responsiveness of healthcare services The Operational Plan of the NRIS (2014-2016) (Ministry of Health, Social Services and Equality, 2013a) aims to reorient health services towards equity, both in the areas of health promotion and disease prevention and healthcare, with special emphasis on groups that accumulate more risk such as children and women. The activities proposed are: provide training to improve equity in healthcare services, improve cultural sensitivity of resources, support and promote training actions for diversity and cultural competence among health providers; and train CSOs for effective mediation between communities and services. In this section these aspects are evaluated following these subsections: (1) prioritized health inequities in the NRIS (Plan Operativo, 2014-2016); (2) policies for more responsive NHS for the Roma population, (3) adaptation strategies and service providers; and (4) good practices addressing Roma specific health needs. 4.3.1. Health inequities identified in the NRIS The NRIS health objectives are based on the results obtained in the only reference comparative study done in Spain. This comparative study primarily draws on the national surveys carried out with Roma and non-Roma population in 2006 (La Parra, 2009) and, to a lesser extent, on the Health and the Roma Community survey (Ministerio de Sanidad y Cosumo & Fundación Secretariado Gitano, 2007). The study compares the differences between national Roma and non-Roma population regarding certain types of diseases and lifestyles. As a result, the NRIS focuses on the health inequities of national Roma, disregarding the increasing number of Roma coming from Romania and Bulgaria. This may be explained by the lack of information about foreign Roma and their health inequalities and social determinants in Spain: “We have to know exactly what to tackle. So far, we don’t have that information, so we are acting blindly.” (Manager1) Although the people interviewed for this report acknowledge the importance of the objectives set by the NRIS, they also draw attention to the limitations of its exclusively biomedical perspective, disregarding the social determinants that surrounded these communities, specially the foreign Roma: “Regarding health in the NRIS, I’ve been hearing the same things for years. Look, in three years, we’ve gone this far and, in four years, we’ve achieved this. This is all consolidated now, so why should we repeat the same objectives over and over again?” (Manager5) 98
45 “An unfavourable setting such as a settlement (...) raises a child’s chances of getting sick or of having an accident. If the father does not work (...), if he has a low education level and other more serious problems, (...) he is not going to be concerned with healthy eating.” (Social worker1) “Why are there 20 people living in a flat? Because people don’t generally rent out flats to them. It’s not that they want to live in these conditions. (...) Here we meet smelly children, we ask them and it turns out they don’t have running water (...). Housing is also health. If they suffer from scabies, how do we treat them at home? (...) Treatments are very specific in this case: to throw everything out, to wash everything at 60 degrees, lotions, no contact (...). If there are 20 people in a flat, what can you do?” (Social Worker4) The interviewees also explain that the objectives are not interconnected and integrated within other existing strategic elements of the NHS (e.g., regional health plans, national legislation, national strategies for cancer, cardiovascular diseases, etc.), in spite of the fact that the NRIS proposes certain cross-sectoral lines of action (e.g., administrative participation and collaboration, accessibility, and use and efficiency of healthcare services). 4.3.2. Policies to make healthcare services more responsive In the elaboration of some of the plans and policies implemented in Spain, the need to create services, procedures, and resources that are responsive to the Roma population has been considered by different sectors. At national level, the focus has been placed on the training of providers, the implementation of integrated and sensitive practices, the elaboration of reports and reference guides about the health of the Roma community, and the adaptation of informative, preventive and promotional campaigns (National Action Plan on Social Inclusion in Spain, 2008-2010; Action Plan for the Development of the Romani population, 2010-2012; National Strategy for Health Equity for the Roma Population, 2003). At regional level, Catalonia and Andalusia follow the same guidelines, stressing the training of providers and the adaptation of resources, services and programmes to this population. As an innovative measure, they seek to appoint providers in health centres and regional health agents of Roma origin, and to expand awareness of the Roma population within the NHS (e.g., providing meeting spaces in hospitals) (Immigration Master Plan for Health in Catalonia, 2006; Integrated Plan for the Roma Community of Andalusia, 1996; I and II Integrated Plan for the Roma People in Catalonia, 2005- 2008/2009-2013). Despite all previous attempts to make a more culturally sensitive NHS, there is no integration of all the above contents in the academic curriculum of health studies at Spanish universities (e.g., medical and nursing degrees) or in permanent training programs of the different regional Ministries of Health. The few existing exceptions are elective courses or courses outside the official curriculum (e.g., special courses, degrees of expertise), which are more focused on immigrant population rather than the Roma community. 4.3.3. Adaptation strategies of healthcare services and providers For the most part, healthcare services do not have protocols specifically adapted to the Roma community (Cabedo et al., 2000): 99
52 The level of patient satisfaction and their responses to the programme are reflected in the motivation and satisfaction of the providers, particularly in the case of the midwife of the program: “I am happy, because I think I have achieved many things, mostly with monitoring during pregnancy and postnatal care (…). I offer support for these women’s family planning (…). I have my patients’ respect (...) I am getting them to do the follow-ups (…). I am very satisfied because they come looking for the midwife all the time, morning or evening, they look for me. I feel that they need me, that I am useful to them.” (Midwife) b) What are the challenges regarding the Roma population in terms of family planning? The first challenge that providers are faced with is that patients generally lack the necessary documentation to apply for a Health Card in order to be assisted as full citizens within the NHS. Although all the providers declare that they never refuse medical assistance to people without a Health Card, they acknowledge that this makes the process very difficult (e.g., they cannot have access to medical records, or prescribe proper treatments). These administrative barriers regarding the access to the health system are highlighted by one practitioner: “For me, the main difficulties are administrative, because these people don’t usually do their paperwork (…). Many young people don’t even have an ID card. Many pregnant teenagers don’t have an ID card. There was the case that one of them was missing from all the records, as sometimes they don’t even have a birth certificate.” (Midwife) Another characteristic of this social environment is that many of the Roma assisted by the PHC are travellers. This is a great challenge for practitioners, as it is difficult to establish a close and longlasting relationship with patients. In their own words: “Something that characterises this centre is that people who have normalised their lives suddenly move to a different place, and then comes another person with a dysfunctional family background. Then everything has to start afresh.” (Nursing Assistant 1) “The travelling population represents a high percentage of the users, they come and go, and this affects your work. If there is an incident or something, we suddenly notice a gain or a loss of patients.” (Doctor 1) One of the major challenges that providers highlight is the lack of family planning as an intrinsic characteristic of the Roma population they assist: “The field of contraceptives or family planning is unfamiliar to them; they don’t have this planning culture, not even for nutrition (...). Whatever requires planning is a big effort for them.” (Nursing Assistant 2) Thus, providers observe that women patients only realise they need contraceptives when it is too late - that is, when they are already pregnant. The same happens when they deal with treatments that have no immediate effect on the pain that patients are suffering from at the time: 106
53 “Medication must be something that shows some effect. If they don’t see this effect, it is very difficult to convince them to take it. In fact, chronic diseases are much more common in this population than in others.” (Doctor 1) This lack of future planning generates inconveniences for the Roma users as well as for the centre’s appointment system: “You give them an appointment in a month’s time, you give it to a person who has no watch, no calendar. And, in a month’s time, this person could be selling in a market somewhere or doing whatever.” (Doctor 1) This results in a high number of missed appointments, while at the same time many users go to the PHC at any time, expecting to be seen without an appointment. Along with this, practitioners also highlight certain peculiarities in the Roma population’s access to healthcare services. For example, they have observed that this population often go to the centre for minor issues: “Here, they come to the doctor’s for everything. If they have a common wound, they don’t buy a sticking plaster or Betadine, they come to the centre to get it cleaned.” (Doctor 1) However, specific symptoms of certain diseases that these women suffer are disregarded, and therefore they do arrange check-ups to treat them: “Roma women assimilate aging quite soon, they accept early aging, so there are symptoms they are not going to tell their doctor about because they think it’s normal (…), for example, urinary incontinence. They will never tell you about it.” (Doctor 1) Finally, a challenge that is always present when working with Roma population is poverty, which prevents patients from being able to pay for treatments or prescription contraceptives (the NHS partly subsidises prescription drugs, but patients must pay a small part of the total price). The price of drugs is, then, one important aspect that practitioners bear in mind when issuing prescriptions: “We prescribe Adepo in most cases, an injectable contraceptive that lasts for 3 months, and each dose is roughly a euro. Most people in this area don’t carry any money with them, they don’t use any money at all.” (Doctor 1) In response to this critical situation, some social and religious associations offer some medications for free. Many women go to these “charity drug banks” to get contraceptives: 107
54 “In this area, drug banks are widely used (...), not only by undocumented people, who are not as many as those who don’t have any money. Now I am starting to prescribe considering the price of some treatments, because patients ask me: But how much is that? (…) And then they go to Cáritas to get them.” (Doctor 1) c) What skills and strategies have health practitioners developed in order to efficiently tackle these challenges? Health practitioners in charge of the family planning programme in the PHC Polígono Sur have become very aware of their needs as providers and as a public institution to adapt to the particular features of the community they assist. As one practitioner states: “I am going to provide health assistance to a population with particular characteristics. I think that healthcare should adapt to the people for whom it is provided. If this community demands immediate assistance, then what’s with giving appointments in a month’s time? The service must be adapted to suit the characteristics of the population.” (Doctor 1) As a consequence, they have developed a series of practices throughout the years: Practitioners adapt certain clinical protocols to the population they assist. For example, regarding the prescription of contraceptives after childbirth: “We also adapt some contraceptive protocols. For instance, in the forty-day period after childbirth contraceptives are not generally prescribed. The Roma community is one of the few where we do it, we prescribe contraceptives, because it is one of their customs (...) to have full sexual relations very soon, and some women get pregnant within one month of childbirth.” (Doctor 1) They also adapt the way routine gynaecological examinations are carried out: “Many times they stop coming because they think that in order to get the pill or something else they have to undergo a smear or a pelvic exam, and they don’t (...). And so, at first, we don’t do any examination.” (Doctor 2) In order to adapt to the lack of formal education of the majority of the population they assist, practitioners make great efforts to communicate relevant information orally to users: “This population can’t read, written information is the worst, so we don’t use it.” (Doctor 1) Practitioners are aware that their role is not only to provide certain services, but also to provide education in reproductive health: “I organise workshops on maternal education, where we deal with health topics, with family planning. Then there’s also my postnatal workshop, where I also get them engaged. I know this 108
55 work because I try hard so they don’t drop out: I give them appointments, I see them and I keep preparing them, educating them.” (Midwife) Furthermore, the midwife also visits the local school regularly to teach teenagers about contraceptive methods and sexually transmitted diseases. In spite of all this, practitioners also acknowledge that this is a complex, long, and slow process: “It takes a long time and a lot of energy to explain everything to them until you think they have understood. But then you see them in the blood collection service, and you know they haven’t understood a thing. (...) But we have to educate them, don’t we? (...) and there and then I try to engage the patient and educate her so she keeps taking steps in this direction.” (Nursing Assistant 1) Practitioners have developed what they call “opportunist engaging” - that is, they try to engage a user of a different programme in the centre and transfer her to the family planning programme: “What I do is mainly active engaging. Not only when I am in family planning, but also when I am in any other service or in the accident and emergency department, because this is a group that does not regularly follow preventive programmes of any kind, because they don’t think it’s necessary (...). Opportunist engaging is essential.” (Nurse 1) “We try to engage them even on the corridors (...). We even do it outside service hours.” (Nurse 2) One of the key moments for engaging new users is at pregnancy tests: “We established that, if an urgent pregnancy test is requested, the result is not given to the woman immediately. Rather, she has to see the doctor first, who transfers her to the midwife so she can engage her in the programme or address her regarding contraceptive methods.” (Nurse 2) As far as “opportunist engaging,” practitioners’ monitoring of users is very personalised, and they stress that they use the telephone to contact them: “I use the telephone a lot, I call them a lot. I call them when they miss an appointment. Sometimes I also go to their places to look for them, so they can have a proper follow-up.” (Midwife) All the practitioners agree that this community requires very active and consistent monitoring, in order to ensure the continuation of treatments: “How do we do it? How do we adapt? For example, we know that it is not simply a question of giving an appointment and then you can just sit and relax (...). We are always watchful, always (...), and we call them and we ask them about their activities: Are you going to set up a market? When are you leaving?” (Doctor 1) 109
56 Practitioners have developed great flexibility to facilitate Roma population’s access to medical care: “I think that making it easy for people to access the programme is very important.” (Nursing Assistant 2) In fact, it is not compulsory to arrange an appointment to be seen; they try to assist them as they go along: “If there is a problem related to planning, they don’t have to wait so much, we assist them on the go (...), we even assist them on the corridors, like ‘come over here to this room and see such and such doctor.’ And they go there and a method is prescribed.” (Nurse 1) Moreover, practitioners take their patients to their fellow practitioners’ rooms in order to facilitate referral and so that they can be assisted promptly: “If, in a postnatal appointment, the midwife learns that intercourse has already been resumed and that the woman might get pregnant again, even if it’s only within twenty days from childbirth, she calls one of the doctors so that something may be prescribed straightaway. That woman can be seen straightaway, she doesn’t need to arrange an appointment.” (Doctor 1) As can be seen, there is a great degree of collaboration among practitioners, who find that teamwork is the best way to tackle the complex social reality that they face: “We have been trained together; we have become aware of the need to be coordinated, beyond what the planning programme requires from us.” (Midwife) Although each healthcare professional has a specific role, all of them take care of users to the same level, especially when it comes to opportunist engaging: “All the staff is very much involved in everything. Because, if her patient is a woman with three children, she will immediately tell her: listen, have they been vaccinated? The same with me, I mean, we do everything, we try to engage them from any of the programmes.” (Doctor 1) At the same time, two providers who are not involved in the family planning programme liaise between practitioners and other CSOs and public institutions in the area: “The social worker and the laser nurse are generally involved with the city council. This neighbourhood has to work as a team; it has to be interconnected (...). Those people act as a link.” (Doctor 1) That way, they manage to have a broader view of the social problems that they face, and of the actions that are carried out from different areas. 110
57 Practitioners have been able to develop a series of skills that help them tackle efficiently the problems that they face at work and ensure the success of the family planning programme. Among these skills, practitioners highlight: (1) familiarity with users: “I think familiarity, we are very approachable (...). I think that it is very valued here, for example, if you know their family: ‘Well, you know, I am going to treat your grandfather.’ And many times it is through the family that we get to engage the person, either for planning or vaccinations.” (Nurse 2) (2) empathy towards the users’ personal circumstances: “A little bit of empathy is good, to put yourself in their shoes, to know what they’ve had to live through, the society where they have to live, they haven’t chosen it, and well, sometimes it is exasperating, but some other times, this is precisely what makes you aware of things, isn’t it?” (Nursing Assistant 2) (3) resoluteness in the face of everyday problems: “To have a calling for solving problems, right? To solve problems (...). What’s the problem? (...) Let’s do it, right?” (Nursing Assistant 1) and (4) a positive attitude towards other cultures: “It’s like an attitude or a capacity to be constructively amazed. For me, the Roma community is very different from me, I consider them different, but they amaze me constructively, I don’t know, I like seeing those differences (...). That is very gratifying for me, it is something that I find gratifying. I think that if you have that curiosity, well, then your job becomes more logical and interesting, because sometimes it’s a bummer, of course, because there are many little failures.” (Nursing Assistant 2) As a healthcare organisation, the PHC itself has made several adjustments in order to adapt to the characteristics of the population that it assists. Thus, the practitioner-patient ratio is lower in this centre than in other areas of the city, because they understand that work here is more demanding. Furthermore, the family planning programme is open three mornings and one afternoon every week, because of the little availability of the Roma population to adjust to the schedules provided by most PHCs: “In the morning, the women generally go to the street markets, and so they would never attend the programme.” (Doctor 1) Lastly, the centre is open for training programmes meant for its healthcare providers to improve their competencies, especially with respect to how to deal with the Roma population: 111
58 “Members of Fakali have come here to deliver talks (...). They’ve come here to tell us about their life, their way of being, their feelings (...), what they feel is their people. They’ve talked about the history of the Roma people.” (Midwife) d) What elements are considered challenges that still need to be faced? Even though the family planning programme is considered successful by providers and satisfactory by users, practitioners are aware that many challenges remain. In the first place, they believe that there should be a medical record specifically designed for the Roma people. With a record of this kind, they could carry out quantitative assessment of how effective their family planning programme is. Without a record, the assessment of the programme is limited to the practitioners’ perceptions, which generates some uncertainty as to the actual efficacy of the programme: “We do our best, we do what we can, that’s true. Then the results will be what will be, but very often we don’t know them.” (Nurse 2) Secondly, practitioners still see Roma teenager pregnancy prevention as a daunting challenge, due in part to cultural values, much ingrained in this population, which have proven difficult to modify: “It is very difficult to prevent 14-15 year-old girls from getting pregnant (...). It’s easier when they are older, but it is very difficult to prevent the first pregnancy (...). For Roma girls, well, for many of them (...) it is very important to get married and have children and the sooner the better. They even ask for fertility tests at 17. If they don’t get pregnant soon, they start thinking that they are sterile and that they need a test (...). In these cases, we don’t know how to proceed, because it’s a cultural thing, and very difficult, isn’t it?” (Doctor 2) Finally, practitioners think that work with Roma men would be a necessary complement to their work with women. Nevertheless, so far they have not managed to get them involved in the process: “Roma men are very difficult, they don’t get involved in anything, many women even come here to get contraceptive methods behind their partner’s back (...). Men are in worse health conditions, much worse than women, they let themselves go (...). We always treat women, but it is culturally very difficult to approach men.” (Doctor 2) 4.3.4.5. Lessons learned There are several reasons for considering the family planning programme implemented in the PHC Polígono Sur as an example of good practice in work with the Roma population: (a) practitioners are capable of developing the necessary competences to assist their users adequately, adapting to their peculiarities as a people, and to satisfactorily manage the stress conditions and the adverse social situation in which they work; (b) professional practices have been adapted to the characteristics of the population, especially regarding clinical protocols, active engaging and personalised monitoring; 112
59 (c) there is close collaboration among the healthcare providers involved in the family planning programme, as well as between these and other social agents in the area, something that gives them a wider view of the social problems that they face; and (d) the healthcare organisation is sensitive to the peculiarities of the population it assists, concerned with the training of its providers, and capable of adapting to the demands for improvement of its members. The information drawn from this case study is helpful for adapting the design and implementation of healthcare practices to the characteristics of the Roma population in other similar contexts. Specifically, the most important lessons learned from this case study are the following: It is important to be aware of the fact that being of Roma origin generally goes hand in hand with poverty and a low level of education. This fact evidences the need to consolidate a coordinated network of intervention stakeholders (e.g., providers within the public administration, members of social organisations, practitioners and technicians) to work simultaneously on different levels (e.g., educational, social, cultural, professional and public health). Bearing in mind the central role that women have in care processes, it is important for CSOs to create workshops to train Roma women in symptom recognition, personal and family care, and such similar health issues. It is essential to privilege the concept of prevention over the concept of treatment, especially in the information given to Roma children and youths in schools. It is an innovative and interesting measure to locate Roma men who can become referents of healthy habits for their community, in order to promote these also among the male population. The recruitment and training of human resources to work directly with Roma people must include the following skills: familiarity, empathy, resolution skills in adverse situations and openness to other cultures and worldviews. It is necessary for healthcare providers to play an active role in the situations of vulnerability with which they deal, constantly engaging new patients and personalising monitoring through home visits or telephone calls. There is a direct relationship between users’ satisfaction and providers’ motivation. Therefore, it is beneficial to provide practitioners with feedback that shows the users’ satisfaction with their performance. In work with the Roma population, it is important for professional healthcare practices to remain flexible and to adapt to the particular characteristics of Roma population (e.g., adaptation of clinical protocols, oral transmission of information, morning and afternoon shifts for user assistance services, and so on). It is necessary to simplify the administrative procedures that ensure medical assistance for the Roma population. In order to do so, a person of reference in the centre should be in charge of dealing with the required documentation. The implementation of an efficient appointment system is needed, with limited waiting periods adapted to the Roma patients who are travellers. In order to acknowledge the work of its professional, the healthcare institution must lower practitioner-patient ratios and provide constant support through specific training programmes. Healthcare organisations must encourage teamwork and implement reward systems that promote cooperative work over competitive work. This is the best way to deal with professional stress and to offer a quality service. 113
60 It is important to implement an assessment system that, without obstructing their work, may allow practitioners to assess the real impact and efficiency of healthcare programmes. Box 7: Highlights of responsiveness of healthcare services The NRIS and its Operational plan cover the responsiveness of the NHS through the objectives aimed at reducing specific Roma health inequities and the strategic lines of actions to do so (such as use and efficiency of healthcare services). However, attention has been drawn to the limitations of the NRIS in this way: It is mainly focused on the national Roma population, disregarding the foreign Roma community. Its perspective is exclusively biomedical Its objectives are neither interconnect nor integrated with other existing policies and strategies of the NHS. Some efforts have been done to make the NHS more responsive towards the Roma community: At a policy level regional and national governments have developed plans to culturally train providers, published reports and guides about Roma health, culturally adapted campaigns, deployed health agents (e.g., Action Plan for the Development of the Roma Population 2010-2012, or the I and II Integrated Plan for the Roma People in Catalonia. However, nothing of the above is integrated in the academic curriculum of health degrees. Generally, healthcare centres do not have specific protocols for the Roma. Although some of them adapt the general protocols to their Roma population and needs. Some of these adaptations are related to the ways to communicate with Roma users, balance healthcare assistance with their religious beliefs, economic situation, etc. There are also other adaptations that imply a great effort on the part of providers, such as being more proactive, constantly vigilant on monitoring and locating Roma users; which can cause burnout among providers. 4.4. Achieving and sustaining change The NRIS Operational Plan focuses on the need to improve the coordination and collaboration among different stakeholders (Ministry of Health, Social Services and Equality, 2013). Their coordination will be central for the planning and guiding of state general administrations and the AACC. To ensure its success, this plan proposes a series of changes to overcome the difficulties encountered in previous projects, including the promotion of policies and actions intended to reduce the inequalities in health of the Roma population and to have more equitable healthcare services. In this sense, special attention must be paid to the foreign Roma population. Therefore, this plan requires the active participation of the Health Working Group of the Roma State Council in all its actions. At the same time, the plan also guarantees collaborative work among the different agents involved, reinforcing inter-sectoral, multi-territorial and institutional collaboration. In this regard, this report considers the following indicators: (1) the political and economic context of the NRIS; (2) the challenges regarding Roma collaboration and participation, including the relationships between national and foreign Roma, Roma associationism and the collaborative relations among organisations; (3) collaborative work among the different agents involved, placing 114
61 the focus on the impact of the power relations between them; (4) the promotion of inter-sectoral collaboration and the synergistic role that health promotion plays in this sense. 4.4.1. The political and economic context of the NRIS One of the challenges that could hinder the implementation of the NRIS in Spain is the current unstable economic and political climate characterized by cutbacks in public protection services such as health or education. This difficult situation not only limits the distribution, planning, and recruitment of human, economic and material resources, but also reduces the impact of previous achievements in Roma health. As a matter of fact, it is important to highlight that the NRIS in Spain could not be implemented in 2012 and 2013, since the Operational Plan was not developed until the mid of 2014 –when this report was already being written. At the same time, the fact that the strategy is not sufficiently publicised among stakeholders and civil society alike also hampers its correct implementation. More specifically, the NRIS is known within national and regional institutions because it is compulsory for proposals for funding to be correspondent with existing national and European projects—it is for this reason that the future comprehensive plans for the Roma population in Catalonia and Andalusia incorporate the objectives of the NRIS. However, at local level, the strategy is hardly known. Some stakeholders are aware of its contents, but because the information has come from other sources (e.g., websites and CSOs’ reports). The interviewees, who work more closely with the Roma community, blame their ignorance of the NRIS as well as its deficient implementation on the little commitment and interest among those in charge of the strategy. They also highlight the lack of shared responsibility among multiple stakeholders in making the strategy fully functional: “We [providers and policymakers] are also responsible; they [the Roma] do what they can.” (Social Worker4) The lack of information, coordination, and communication among stakeholders may be due to the decentralisation of the competencies of the NRIS to national, regional and local institutions, which makes the accountability of its implementation and monitoring unclear. As a matter of fact, the NRIS is an initiative of the Spanish Ministry of Health, Social Services, and Equality (Ministerio de Sanidad, Política Social e Igualdad) which works in coordination with other ministries and delegates responsibilities to the AACC, in charge of implementing the strategy through regional plans. In order to assess this decentralisation of competencies, there is a group of technical cooperation made up of representatives of the NRIS in the Ministry and policymakers in the AACC. From that point, the process of implementing the strategy encounters a series of difficulties. Firstly, because regional bodies also delegate powers to local institutions and this may generate a conflict of interests (e.g., if the political party that governs a city council is different from that of the regional government). Secondly, because the NRIS does not have its own budget, but rather gets funding from existing budgets (e.g., the budget of the Roma Development Programme, Personal Income Tax, national benefit schemes and European funds): “Writing plans down is not expensive and it makes them look good, but developing everything that has been written down is expensive and that’s when plans begin to founder.” (Policymaker1) 115
68 The Consortium is required to coordinate inter-sectoral work in the implementation of social, labour, cultural, educational, health, housing and urban development actions in the neighbourhood. The social, health, and education resources allocated to La Mina do not fall short in comparison to those allocated to other neighbourhoods. However, more significantly the neighbourhood perhaps lacked a more global project to ensure that the actions different authorities were well coordinated and complementary, and to overcome the dynamic of one-off interventions and short-term aims, as had been attempted several times since 1982. Thus, La Mina can be described as a neighbourhood of ‘instantaneous creation,’ a result of the relocation of different population groups originally from other parts of Spain and whose initial services and facilities were soon outgrown by the needs of newcomers, mainly young families with children. In many cases, this population had social, occupational, cultural and/or economic deficits. The number of neighbourhood residents fell from 10,664 in the early 1990s to 8,847 in 2008. At this point, the trend reversed and the population is growing since then. On 1st of January 2014, the municipal register recorded a resident population of 9,777 people aged between 25 and 44 yearsold and 27% under 20 years. 51% are men and 48% are women. In this neighbourhood, Roma families live alongside migrant families, Catalan families and those from other parts of Spain. Sant Adrià is one of the leading municipalities of Catalonia in terms of Roma population, besides Barcelona and Badalona, and La Mina is the neighbourhood with the largest number of Roma residents (Abajo & Carrasco, 2004). Some estimates indicate that Roma make up 30% of all neighbourhood residents (Méndez, 2005: 243). A total of 10% are third-country nationals, particularly from Pakistan, Morocco, and China. The economic activity of the neighbourhood is based on small local shops with little diversification. Almost half of its businesses (40%) are bars and restaurants. The labour market situation is marked by instability and high unemployment, with significant inequality in access to employment for men and women, to the detriment of women. These issues have formed the cornerstones of the Transformation Plan, addressed by the Consortium of La Mina through its Network of Social and Occupational Integration Services to promote employment and training. Along these lines, the Consortium funds occupational and social integration pathway for women of La Mina neighbourhood project, designed to promote the inclusion of women into the labour market by increasing their motivation to work and accompanying them in developing their professional skills in particular job through technical training at work placements. There are currently around 30 civil society associations in La Mina, many of which contribute in varying degrees to the improvement and transformation of the neighbourhood. Besides their own activities, they participate in community life by organising various community celebrations over the year to reinforce the sense of belonging. These include Women’s Day, Games Day, the Week of Culture, Children’s Rights Day, Gender Violence Awareness Day and so on. In January 2013, the Catalan Government approved the contract to construct the new PHC of La Mina, one of the key facilities of the Neighbourhood Transformation Plan. The works are scheduled for completion in 2014. 122
69 4.4.5.2. Research questions a) What success indicators define the occupational and social integration pathway for women of La Mina neighbourhood project? b) What are the health problems of Roma women from La Mina and what challenges do they face for the implementation of prevention and health promotion strategies? c) What skills and strategies have been developed to manage these challenges properly? d) What elements are considered challenges that still need to be faced? 4.4.5.3. Research process The information was compiled by three technicians from the Catalan Agency of Public Health (Ministry of Health of the Government of Catalonia). To collect relevant evidence, the following qualitative methods of data collection were used: Documentary compilation: Analysis of written documents or records cited by those involved in the study project. Participant observation: Description of what the researchers observed during interviews. Interviews: Through communicative interaction between researchers and participants, to obtain individual narratives from two of the people involved in the project. Specifically, we conducted in-depth interviews with the project's Roma mediator and social educator. The informed consent of the interviewees for the recording and use of the data they provided was requested, guaranteeing both full anonymity and that the information would be used strictly for research purposes. The open questions asked during the interview to the persons in charge of the project included: What does the programme involve? How many women are you in charge of? What health problems have you identified in this group? What do you think the cause of these problems is? Do women participate in prevention and health promotion programmes? What opportunities have you identified and how do you think they could be leveraged? What actions have been undertaken to improve the health of this group through the programme? The interviews were transcribed and studied in conjunction with the cited documentary material. The fragments of the conversation that could be used to answer the research questions formulated previously were selected and contrasted with the results obtained by analysing the content. 4.4.5.4. Chain of evidences a) What success indicators define the occupational and social pathway for women of La Mina neighbourhood project? The project offers a guidance and training pathway. In addition to its guidance actions, group and individual tutoring, work placements and tailored training, the pathway also includes intercultural mediation actions. It is funded by the Consortium of La Mina neighbourhood and seeks to promote the inclusion of women into the labour market by increasing their motivation to work and accompanying them in developing their professional skills in particular to find a job through technical training at work placements. The project also works with Roma women on eliminating labour prejudices and their idea of what non-Roma population thinks about them as a group and as workers. 123
70 One of the factors for programme success has been to work with the community to stamp out prejudices and solve problems linked to this. The project seeks to equip participants with the tools to defend themselves and gradually adapt and integrate in their new working environment so that they do not walk out of their jobs. At the starting point, women could not see themselves being able to work because they did not value themselves, and they said that shops would not hire them because they were very dark skinned and would not want them because they would see them as thieves. All based on the prejudices that they thought mainstream society had against them, as if they were coming to steal something, which caused them distress and contradictory emotions that then stopped them from going back to work. All projects aimed at bringing change at a community level should be carried out with community leaders, in this case with Roma women recognized by their community. This statement is based on the understanding that community recognition is associated with integration and acceptance of culture, codes, and customs. “To be considered a leader, a professional needs to be in and recognized by their community and to know its codes; otherwise, they are better off working in some other area. (…) Some Roma people work for the community but they are not leaders and they are not recognized by the community; it is important for them to be inside the community so that they understand how it works, because Roma are community based. Community is more important than individuality.” (Mediator) Another factor to note in this project is its inter-sectoral work. The project has used professional reintegration—an activity that Roma women do out of need or obligation—to identify other problems and needs that they do not see as priorities, such as health problems: “The group of women we are working with on employment issues don't come because they have decided to, they come for practices in the hospitality industry, which is what they are going to do. This is their real aim and through that, we work on other things.” (Social Educator) In these groups, women are given the opportunity to participate and communicate with the leaders, allowing them to express their views on employment and family, and understandings of health problems. Ultimately, the aim is to address other problems affecting this group, besides employment: “Because we really believe that to work on health issues we have to work with their needs” (Mediator) Another interesting approach to their problems is through the sense of interdependence generated by creating an informal relationship with groups of non-Roma women, which promotes critical thinking by both groups and encourages empathy. Working with the two communities generates space for reflection and integration in which one of the communities focuses on the skills profile of the other – rather than its origin – to increase awareness and generate critical competence. The idea is to create social environment conducive to the processes of communication and collaboration between people from different backgrounds. This interaction facilitate that Roma 124
71 women can see their taboos in a different way and relativize them. They can decide to change their attitudes and cultural habits: “There was a lot of prejudices against them and they got down to work with both groups together, Roma women with non-Roma women, which didn't cause any problems between the Roma and non-Roma women of the neighbourhood.” (Mediator) “Why do you think that eighty-year-old non-Roma women can get on the underground alone and yet it's unthinkable for our eighty-year-old mothers to travel by themselves on the underground? Because they're at home; they need to be cared for, they're like centenarians.” (Mediator) b) What are the health problems identified in Roma women from La Mina and what challenges do they pose to the implementation of prevention and health promotion strategies? One of the main problems identified by the project is unhealthy lifestyle of Roma women. Roma women have unhealthy eating habits and do not get enough physical exercise. Cultural stereotypes are one of the main factors preventing Roma women from taking care of their health; for example, the community does not see exercise as positive. Since doing sports requires women to wear certain type of clothing (i.e. tracksuits) or doing activities in potentially embarrassing postures, it is difficult for them to practise sport: “Looking after your health is frowned upon among women. Now men are really starting to get out and play sport and go to the gym but women aren't; it's frowned upon.” (Mediator) Roma women tend to associate health with physical appearance and the absence of illness. Being slim and tanned and having nice skin or hair are the factors determining good health for them: “What is on the outside is what is valued because Roma people put a lot of emphasis on body image. (...) Being slim is a sign of good health... having nice hair is a sign of good health, having good skin is a sign of good health, being tanned or having a good skin colour is a sign of good health. Being well dressed is a sign that you feel good or are in a good mood... these are the factors that are really valued within the community.” (Social Educator) Nonetheless, they do not take into account the risks associated with lifestyle habits they adopt to achieve this look: “What I do is eat the stew my mother-in-law makes at lunch time, that's what we all eat, and then at night I'll have one piece of fruit, otherwise I'll stuff myself on fruit. (…) ‘What do I do?’ I eat at lunchtime and then I don't have anything else after that. And what do you do not to feel hungry? I go to bed early so I don't get hungry because I don't want to be overweight for the summer.” (Social Educator) 125
72 They have health problems linked to the strenuous nature of their work and illnesses caused by their unhealthy habits—poor diet and lack of enough exercise, resulting in diabetes and high blood pressure: “These women have very heavy burdens; they are working in physically demanding occupations, such as cleaning ladies, and they need physical strength.” (Mediator) It is very difficult for them to reconcile work and family life, which can lead to depression, anxiety and low self-esteem because they have to meet multiple demands in their day-to-day lives (e.g., employment/unemployment, domestic chores and the family economy, caring for their families and caring for others). Early marriages—with all the family responsibilities this entails—lead to premature ageing among Roma women and health problems associated with their workload and the fact that they are more concerned about others than caring for their own health: “This is a really hard job, too hard... in women with a triple burden. Here we have women in their forties who are cleaning lots of flats and also have to care for their children, their daughters-in-law, their husbands, their mothers... do you see what I mean? their grandchildren... and there's mental health too; we see that on a daily basis in terms of failure at work and how it affects them; the power of the group is also very strong.” (Mediator) There is no concept of prevention. Care for them is to go to a professional when the symptoms are already apparent. The providers consider that Roma women have strong tendency to self-medicate: “Well, naturally, because I'm very tired, my head hurts, because I've got a problem; they take an anti-inflammatory. (…) We are saying that we have a different concept, and our concept is to take care of ourselves when something hurts…” (Mediator) They lack of awareness among providers to tailor prevention and health promotion programmes to the cultural needs of these groups, can be seen in the recommendation of certain activities that are completely off-limits due to cultural barriers: “Almost every granny has a back pain; they can't move. And what did the doctor prescribe? He prescribed swimming... He told her to go swimming or something... something they can’t do. And when I say: ‘Why don't you go to the swimming baths?’ For them it's impossible. First, they'd have to go alone and grannies are never left alone without someone from their community. They have to wear a cap that we'd be all right with, considering appearance. You have to wear a bathing suit with all the taboos associated with that, when they can go... they don't go swimming. Grannies swim in a housecoat, generally, most of them do.” (Mediator) c) What skills and strategies have been developed to manage these challenges properly? One strategy identified as effective by the providers in this project was the need for inter-sectoral work, considering health in a holistic manner dependent on the social environment (e.g., employment, housing, education and the like). 126
73 “The service has worked with 173 women in 2013, almost all for employment needs (...) the problem is that behind these needs there are many others, which, on a holistic level, can be social demands and health problems, and they are clearly not going to ask about those here because they know we aren't health professionals. But you can see that not taking care of their health is not doing them any favours.” (Mediator) This interdisciplinary work has allowed them to identify the health problems and needs of the women attending their professional reintegration programme and to jointly develop intervention strategies tailored to their needs and cultural context. They have managed to optimise public resources for the professional reintegration of this group in order to attract their interest in possible behavioural changes that would allow them to acquire healthy lifestyle habits, which does not appear to be a need for them. “There is a reintegration part associated with working on the status of individuals, that is, a life project as opposed to a professional project. A life project to empower women in every facet of their lives.(…) So it's a protected environment, which is justified because basically you are looking for work... and if I get home at half past one nobody's going to say anything because I am justifiably working to improve the community, which is looking for work, and my husband is not going to say anything.” (Mediator) They have created working environment in which Roma women feel comfortable and protected, working with people considered by these women to be leaders in their community. The project and its providers work to promote physical activity and a healthy diet by adapting the interventions to the cultural context of the Roma community and their understanding of health. For that, the women who started the project used the areas of interest or concept of health among Roma women to design successful strategies in prevention and health promotion (e.g., running out of the neighbourhood in order not to be seen for the rest of the community). If they feel that a particular physical aspect is what determines good health, then it must be used to schedule actions to meet these demands. Physical appearance can be used to work on many other health needs, such as walking, chatting about healthy eating and so on. The important thing, however, is to attract their interest and ensure that they go to these meetings. The project addresses the need to break the taboos of Roma culture with regard to physical activity and raise awareness of the options for practising sport, such as the use of public facilities. There is no need to join a gym if it is not generally culturally accepted. “So what have we done here?’ Actually, a woman from the neighbourhood started to come who was not Roma, and she would do sport every day outdoors, basically running and using the outdoor machines... climbing stairs... and she'd say to us, ‘come on, come and join me’. And so we said, quite strategically really: ‘All right, we'll join you!’ and there was this course full of women but then some were saying ‘I'm not running because it's frowned upon’, ‘I'm not going out because they're going to call me crazy’. So we came up with a plan: we'll go running outside the neighbourhood. We went out in tracksuit and trainers and walked to the Fòrum; nobody walks there – you're alone there – and we run around the Fòrum, where nobody can see us, and we do a bit of sport there. And more women have been joining us, they joined because nobody will see them. (…) Because they can't use 127
74 those public spaces they have never been in ... And they don't know what a gym is like inside because they have never been in one... they don't know what the machines are for or what aerobics classes are like.” (Mediator) The project has set up working groups with Roma and non-Roma women, in which both groups can identify different models from which to learn and set up collaborative – as opposed to competitive – relationships. “We think it's good to have Roma and non-Roma women, but there needs to be majority of Roma, otherwise they won't identify. And we also believe that there needs to be non-Roma women who already have habits because they are the ones who are going to move the group. Am I making sense? I mean that they will encourage the others... a women who has lost weight and been on a diet will explain to them ‘What have you done to get like that?’ Some people have certain awareness and encourage the rest. This is the best thing that can happen in a group.” (Mediator) d) What challenges remain? Improve the health of the population through inter-sectoral work, considering the impact on health of any public policy and taking advantage of intervention in one area to identify needs in others. The importance of working with and from within the community both on employment issues and on healthcare with referents from Roma people. Breaking stereotypes that may adversely affect the health of Roma women, while creating open spaces for discussion but always taking into account the Dialogue between Roma and non-Roma women. Preventive and health promotion intervention for Roma women should be tailored to the real needs of these women and their context and lives, so that they can balance self-care with family life. We should study and develop strategies for prevention and health promotion tailored to the needs of elderly Roma groups. The project highlights the need and opportunity to improve Roma health through inter-sectoral work, considering the impact on health of any public policy and taking advantage of intervention in one area to identify needs in others. The project developed in this Roma community is a model for intervention in improving women's health through publicly funded interventions in other areas. The objective is to use an area on interest for the group to be able to use this space as a dinamizator of Health promotion policies that otherwise are no been a priority for Roma women so far, such as to improve their diet and improve her life styles in general. It also highlights the importance of working with and from within the community both on employment issues and on healthcare, which can bring about changes in habits and behaviours in self-care and health promotion. We must work with Roma women leaders from the community if we want to influence change in its lifestyle habits. These referents must know the community codes and rules and must be recognized as members of this community in order to achieve some success. When we deal with sensitive subjects that can break the community cultural rules imposed on women, it is better to begin with women leaders, as Roma women will feel closer and more relaxed when talking about these issues. 128
75 The use of leaders (e.g., religious leaders) can be of help when the own community women has already accepted the change. We are confronting some repetitive processes of habits and stereotypes that can affect negatively the health of Roma women, diminishing their chances for labour market integration and general health improvement. Change must be engendered from inside of the community, and must generate open spaces for debate, while taking into account dialogue between Roma and non-Roma women. Using community referents and creating non-formal spaces for diversity allow the exchange of different points of view and give the possibility for personal growing. This interrelationship between the two groups may allow them to expand their cultural boundaries and visualize similarities between the two contexts in terms of responses to these problems or making more permeable a possible change in behaviour. An important feature of this type of situation is to enable participants to integrate the experiences of group differences at the same time that they develop different personal identities. It is also important to work with non-Roma women to create informal spaces for diversity. The interrelationship between the two groups can encourage them to expand their cultural boundaries and see similarities between the two contexts in terms of responses to these problems or making a possible change in behaviour more permeable. One important function of this type of situation is to enable participants to integrate the experiences of group differences while analysing different personal identities. Preventive and health promotion intervention for Roma women should be tailored to their real needs and their socio-economic realities, so that they can balance self-care with family life. Their behaviours are also dependent on the family environment: whether the woman is a mother, whether she has found employment, whether her husband is supportive and so forth. We must consider the home environment of the individual woman in order to tailor intervention strategies to each situation and incorporate healthy habits and exercise into the lives of Roma women. Community leaders can be made aware of the situation of each woman in order to then work on different strategies. The better and more closely the problem is known, the better and more effective solutions may be applied. Finally, once the role of female Roma has been analysed, we should study and develop strategies for prevention and health promotion tailored to the needs of elderly Roma groups as a future challenge, since there are few interventions for them within this sector. 4.4.5.5. Lessons learned The defining characteristic of Roma employment status in Spain is precarious underemployment, although in recent years Roma women have increased their labour participation, albeit below the employment rate of non-Roma women. As a result, many women have been confronted with cultural stereotypes that have led to many difficulties and required efforts for their integration in the labour market. This situation has led to initiatives such as the occupational and social integration pathway for women of the La Mina neighbourhood project, designed to promote the inclusion of women into 129
76 the labour market by increasing their motivation to work and accompanying them in developing their professional skills for particular job through technical training and work placements. The main reason of Roma women to incorporate themselves to the formal labour market is economic–to help their families–but there is also an interest in gaining economic independence and increase social and personal recognition. The social determinants of the Roma community bring with them significant health inequalities. Problems with housing, employment and financial resources in general, combined with certain cultural factors, determine their perception of health and their health status. Social and cultural factors influence women's health even more because of the added problems of family burdens and being overworked. The case described in this report reflects all the evidence published on the situation of Roma but provides us with new strategies for inter-sectoral collaboration to identify the problems of this group and define strategies with a greater impact. Work, housing and education appear to be much bigger priorities for the Roma population than health promotion, so it is logical that more resources are allocated to these factors. However, we can leverage interventions in these other areas of interest to introduce an interest in or concern for the promotion of their health. We must optimise the resources allocated to Roma to ensure that the Roma community itself changes the way it sees its health and what they can do to prevent health problems. Within the NHS, there appears to be lack of information tailored to the needs of Roma patients. Prevention and health promotion programmes must take into account the cultural differences of each group and its lifestyle in accordance with the norms of the community. One intervention strategy with potential for success is to implement communication and information strategies using common spaces where Roma women feel free to talk, in communal areas where they can interact with other Roma women in the same situation or perhaps non-Roma women with whom they forge ties for comparison of interpersonal skills in order to foster critical awareness. This could be done through mediators recognised by the community and focusing on areas of concern for these women, such as their perception of healthiness, their interest in an occupational integration programme or curiosity for a television programme about physical activity. Roma women should be part of the creation process of prevention and health promotion programs and even in the development of public policies that affect them, both in their design, planning and implementation, in order to detect possible deviations and provide most accurate picture of the community in which they live. It is only through Roma leadership that change can take place. The information drawn from this case study is helpful for adapting the design and implementation of healthcare practices to the characteristics of the Roma population in other similar contexts. Specifically, the most important lessons learned from this case study are the following: Inter-sectoral policies need to be developed to improve women's health and strengthen their self-esteem. An inter-institutional approach should be adopted to improve equity in health through health policies that act on social determinants in health. 130
77 Improve living and working conditions and generally create favourable environments for health. Focus action on the socio-economic determinants of health in the Roma population, incorporating gender mainstreaming. Access to education, work, health and improved housing quality are strategic areas, as indicated in the Decade of Roma Inclusion 2005-2015. Increase the participation of Roma women in prevention and promotion programmes in order to improve their healthy life styles and consequently to have better care of their own health. Thus, they can also have an impact on the health of their families and the Roma society in general due to their caring and referent role for the group. Work with community leaders recognised as members of the latter who can help negotiate without being seen as an element of pressure and who mediate between the Roma community and the health system. Use meeting spaces accepted by women and the Roma community in general (e.g., places of worship). Adapt intervention strategies in prevention and health promotion to the needs of Roma women (e.g., personal, employment, family and cultural context, taking into account their age). Focus actions on reducing the rapid ageing of men and women. Box 8: Highlights of achieving and sustaining change The last fundamental pillar of the NRIS and the Operational Plan is to enhance Roma health through administrative and institutional cooperation and stakeholders´ participation. Nevertheless, some challenges should be highlighted: The poor implementation of the NRIS is due to the current economic and political context in Spain. The fact that the NRIS does not have its own budget not only limits its implementation and recruitment of resources, but reduces the impact of previous achievements in Roma health. The NRIS is not sufficiently publicised among stakeholders and the civil society. To carry out its implementation, regional bodies delegate powers to local institutions, thus generating conflicts of interests among the different governments. There is a lack of Roma engagement and collaboration in Roma health policy planning. There exists institutional discrimination against Roma people, especially against foreign Roma. Roma community is concerned that it is non-Roma people who are mostly in charge of designing and implementing actions. There is lack of cooperation, coordination and networking among stakeholders, especially in countries of origin (e.g., Bulgaria, Romania). The national Roma and their associations do not sympathise with and even discriminate foreign Roma. Foreign Roma lack of associations to represent them. There is a progressive bureaucratization of Roma associations. 131