RESUMEN
Drawing on ethnographic research from Albania, I examine Romani and Balkan Egyptian women's health inequities. While it has been well documented that Romani people, who constitute Europe's largest socioracial minority group, experience racism and marginalization, how these forms of social exclusion shape health outcomes in the Balkans remains limited. I argue that racism is a root cause of social and health inequities, and that Romani and Egyptian women experience unique bodily fatigue marked by extreme zor ("difficulty," "constraint"). An examination of zor can potentially provide an understanding of how racism and marginalization are embodied over time.
Asunto(s)
Disparidades en Atención de Salud/etnología , Racismo/etnología , Adulto , Albania/etnología , Antropología Médica , Egipto , Femenino , Humanos , Masculino , Romaní/etnologíaRESUMEN
The Roma people are the largest transnational ethnic minority in Europe and can be considered the last human migration of South Asian origin into the continent. They left Northwest India approximately 1,000 years ago, reaching the Balkan Peninsula around the twelfth century and Romania in the fourteenth century. Here, we analyze whole-genome sequencing data of 40 Roma and 40 non-Roma individuals from Romania. We performed a genome-wide scan of selection comparing Roma, their local host population, and a Northwestern Indian population, to identify the selective pressures faced by the Roma mainly after they settled in Europe. We identify under recent selection several pathways implicated in immune responses, among them cellular metabolism pathways known to be rewired after immune stimulation. We validated the interaction between PIK3-mTOR-HIF-1α and cytokine response influenced by bacterial and fungal infections. Our results point to a significant role of these pathways for host defense against the most prevalent pathogens in Europe during the last millennium.
Asunto(s)
Inmunidad/genética , Romaní/genética , Adulto , Pueblo Asiatico/genética , Peninsula Balcánica , Etnicidad/genética , Femenino , Efecto Fundador , Genética de Población/métodos , Migración Humana , Humanos , India , Masculino , Grupos Minoritarios , Romaní/etnología , Rumanía , Selección Genética , Población Blanca/genética , Secuenciación Completa del Genoma/métodosRESUMEN
Data mainly from one-off surveys clearly show that the health of Roma, the largest ethnic minority of Europe, is much worse than that of the general population. However, results from comprehensive exploratory studies are missing. The aim of our study was to create a complex database for comparative and association studies to better understand the background of the very unfavourable health of Roma, especially the high burden of cardiometabolic diseases. A three-pillar (questionnaire-based, physical and laboratory examinations) health survey was carried out on randomly selected samples of the Hungarian general (HG, n = 417) and Roma (HR, n = 415) populations, and a database consisting of more than half a million datapoints was created. Using selected data, the prevalence rates of metabolic syndrome (MetS) and of its components were determined, and to estimate the risk of insulin resistance (IR), surrogate measures (the homeostasis model assessment of insulin resistance index, quantitative insulin sensitivity check index, McAuley and TyG indices and the TG/HDL-C ratio) were calculated. Receiver operating characteristic curve analysis and Youden's method were used to define the optimal cut-off values of each IR index. The prevalence of MetS was very high in both study populations (HG: 39.8%, HR: 44.0%) with no statistically significant difference between the two groups in females or males. The prevalence of MetS showed a very marked increase in the HR 35-49 years age group. Among surrogate measures, the TyG index showed the greatest power for predicting IR/MetS at a cut-off value of 4.69 (77% sensitivity, 84% specificity) and indicated a 42.3% (HG) and 40.5% (HR) prevalence of IR. The prevalence of MetS and IR is almost equally very unfavourable in both groups; thus, the factors underlying the high premature mortality burden of Roma should be further clarified by investigating the full spectrum of risk factors available in the database, with a special focus on the access of Roma people to preventive and curative health services.
Asunto(s)
Glucemia/metabolismo , Resistencia a la Insulina/etnología , Síndrome Metabólico/etnología , Obesidad/metabolismo , Romaní/estadística & datos numéricos , Población Blanca/estadística & datos numéricos , Adulto , Estudios Transversales , Europa (Continente)/epidemiología , Femenino , Humanos , Hungría/epidemiología , Masculino , Síndrome Metabólico/epidemiología , Persona de Mediana Edad , Prevalencia , Romaní/etnología , Encuestas y Cuestionarios , Triglicéridos/sangreRESUMEN
OBJECTIVE: In most indicators of the way of life, the Roma community is generally different from the majority population and dominant culture. The objective of the study was to describe factors affecting the health of the Roma living in Slovakia, with an emphasis on the sexual and reproductive health of Roma women, and report on the results of analysis of high-risk pregnancies of Roma women in the district of Rimavská Sobota, Slovakia. METHODS: A retrospective study of medical documentation was used. The results were analyzed using the absolute and relative frequencies. Statistical methods were used. RESULTS: A total of 1,256 high-risk pregnancies were analyzed, of which 622 (49.52%) were in Roma women. The average age of Roma respondents was lower by 5 years compared to non-Roma. The age of Roma women at the first pregnancy was statistically significantly lower compared to non-Roma (p < 0.001). The Roma respondents achieved statistically significantly lower levels of education than non-Roma. There was a demonstrably higher number of pregnancies as well as a higher number of artificial and spontaneous abortions per Roma woman. These results were statistically significant. For Roma women, pregnancy began to be risky demonstrably earlier than for non-Roma (p < 0.001). There was a statistically significant difference in attending prenatal counselling. Roma women attended prenatal counselling statistically significantly less frequently than non-Roma (p < 0.001). A significant statistical dependence was found between attending prenatal counselling and the onset of pregnancy problems in Roma women. There was no significant difference in the incidence of other diseases associated with high-risk pregnancy among Roma and non-Roma respondents. CONCLUSION: The findings indicate that Roma women are exposed to health problems in the area of sexual and reproductive health in Slovakia. In the approach to the Roma, it is essential to focus on improving accessibility to health care, prevention, knowledgeableness and effectively preventing, eradicating and strongly penalizing all forms of discrimination in access to health care, especially for Roma women, who are more likely to receive health care.
Asunto(s)
Aborto Inducido/estadística & datos numéricos , Aborto Espontáneo/etnología , Embarazo de Alto Riesgo/etnología , Atención Prenatal/estadística & datos numéricos , Servicios de Salud Reproductiva/estadística & datos numéricos , Salud Reproductiva/etnología , Romaní/etnología , Adolescente , Adulto , Femenino , Humanos , Paridad , Embarazo , Complicaciones del Embarazo/etnología , Estudios Retrospectivos , Factores de Riesgo , Eslovaquia/epidemiología , Determinantes Sociales de la Salud , Factores Socioeconómicos , Adulto JovenRESUMEN
Background: The Roma population is one of the largest marginalized population groups in Europe. The aim of our work was to summarize the morbidity of lifestyle-related diseases and infectious diseases in the Roma population living in segregated settlements. Methods: We used data from the cross-sectional study HepaMeta, in which we examined 452 Roma subjects with an average age of 34.7 ± 9.1 years, 35.2% of which were men, and 403 non-Roma subjects with an average age of 33.5 ± 7.4 years, 45.9% of which were men. We collected data by means of a questionnaire, anthropometric measures, and we analyzed blood and urine samples. Results: Roma subjects had a higher incidence of metabolic syndrome (RR: 1.478 (1.159-1.885), p < 0.0001), obesity or waist circumference >94 cm in men/80 cm in women (RR: 1.287 (1.127-1.470), p < 0.0001), and HDL-C < 1.03 mmol/L in men or <1.29 in women (RR: 2.004 (1.730-2.321), p < 0.0001) than their non-Roma counterparts. Subjects of the Roma population were more frequently diagnosed with kidney disease (RR: 1.216 (1.096-1.349), p < 0.0001), HBsAg positivity (RR: 4.468 (2.373-8.415), p < 0.0001), anti HBc IgG positivity (RR: 3.13 (2.598-4.224), p < 0.0001), and anti HEV positivity (RR: 2.972 (1.226-7.287), p < 0.0001). Serological markers of Toxoplasma gondii infection and Toxocara spp. were observed much more frequently among Roma than non-Roma subjects (RR: 1.868 (1.520-2.296), p < 0.0001, for Toxoplasma gondii; and RR: 21.812 (8.097-58.761), p < 0.0001, for Toxocara spp.). Conclusions: Poor socio-economic conditions, an unhealthy lifestyle, and barriers precluding access to healthcare are factors that affect the Roma population in settlements and lead to an increased prevalence of metabolic syndrome and its components, kidney disease, viral hepatitis B and E, and some parasitic diseases.
Asunto(s)
Hepatitis B/etnología , Enfermedades Renales/etnología , Síndrome Metabólico/etnología , Enfermedades Parasitarias/etnología , Romaní/etnología , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Prevalencia , Factores de Riesgo , Población Rural , Eslovaquia/epidemiologíaRESUMEN
BACKGROUND: Since 2016, large scale measles outbreaks have heavily affected countries across Europe. In England, laboratory confirmed measles cases increased almost four-fold between 2017 and 2018, from 259 to 966 cases. Several of the 2017-18 measles outbreaks in England particularly affected Romanian and Roma Romanian communities, with the first outbreaks in these communities occurring in Birmingham, Leeds and Liverpool. This study explored factors influencing vaccination behaviours amongst Romanian and Roma Romanian communities in these three cities. METHODS: Across Birmingham, Leeds and Liverpool, we conducted semi-structured interviews with 33 key providers to explore their experience in delivering vaccinations and managing the outbreak response. We also interviewed 9 Romanian women in one of the cities to explore their vaccination attitudes and behaviours. To categorise factors affecting vaccination we applied the 5As Taxonomy for Determinants of Vaccine Uptake (Access, Affordability, Awareness, Acceptance and Activation) during data analysis. RESULTS: Factors related to access and acceptance, such as language and literacy, ease of registering with a general practice, and trust in health services, were reported as the main barriers to vaccination amongst the communities. Concerns around vaccination safety and importance were reported but these appeared to be less dominant contributing factors to vaccination uptake. The active decline of vaccinations amongst interviewed community members was linked to distrust in healthcare services, which were partly rooted in negative experiences of healthcare in Romania and the UK. CONCLUSION: Access and acceptance, dominant barriers to vaccination, can be improved through the building of trust with communities. To establish trust providers must find ways to connect with and develop a greater understanding of the communities they serve. To achieve this, cultural and linguistic barriers need to be addressed. Better provider-service user relationships are crucial to reducing vaccination inequalities and tackling broader disparities in health service access.
Asunto(s)
Etnicidad , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Sarampión/prevención & control , Aceptación de la Atención de Salud , Confianza , Vacunación , Adolescente , Adulto , Niño , Preescolar , Ciudades , Brotes de Enfermedades , Inglaterra/epidemiología , Femenino , Conductas Relacionadas con la Salud , Servicios de Salud , Humanos , Lenguaje , Masculino , Sarampión/epidemiología , Investigación Cualitativa , Romaní/etnología , Rumanía/etnología , VacunasRESUMEN
PURPOSE: We attempted to identify cultural aspects of epilepsy among the Roma community in Bulgaria by elucidating cultural beliefs, traditional treatments, and potential markers of stigma. METHODS: We established representative discussion groups among five distinct Roma subgroups (Lom, Kalderas, Thracian Tinsmiths (Tinkers), Kyustendil Xoroxane and Kopanari) from different Bulgarian regions. Data about local beliefs and treatment strategies were gathered. RESULTS: Most people were familiar with convulsions but non-convulsive focal seizures were seen not as epileptic but mainly as a "mental problem". Beliefs about putative etiologies for epilepsy were not uniform as some considered environmental and external factors such as high environmental temperatures, electric shocks, loud music, and fever as causes of seizures while others listed bad experiences, stress, trauma, and fear as possible causes. Epilepsy was seen by some as a divine punishment or resulting from black magic. Most considered epilepsy shameful and an obstacle to children attending school. Despite local differences, there was a uniform belief that epilepsy is incurable by Western medicine and people usually resort to traditional healers. A variety of rituals performed by local healers to treat epilepsy were described. DISCUSSION: Misconceptions about epilepsy may contribute to stigmatization in this population; this may in turn contribute to a high treatment gap in this group. As a result, the majority of Roma children with epilepsy are likely to leave school early, are greatly limited in their choice of spouse (particularly girls), and marriages often occur between people with epilepsy or those with a family history of epilepsy.
Asunto(s)
Epilepsia/etnología , Epilepsia/psicología , Medicina Tradicional/psicología , Romaní/etnología , Romaní/psicología , Estigma Social , Bulgaria/etnología , Niño , Epilepsia/terapia , Femenino , Humanos , Masculino , Percepción/fisiología , EstereotipoRESUMEN
Hereditary spastic paraplegia (HSP or SPG) is a group of rare upper motor neuron diseases. As some ethnically-specific, disease-causing homozygous variants were described in the Czech Roma population, we hypotesised that some prevalent HSP-causing variant could exist in this population. Eight Czech Roma patients were found in a large group of Czech patients with suspected HSP and were tested using gene panel massively parallel sequencing (MPS). Two of the eight were diagnosed with SPG11 and SPG77, respectively. The SPG77 patient manifests a pure HSP phenotype, which is unusual for this SPG type. Both patients are compound heterozygotes for two different variants in the SPG11 (c.1603-1G>A and del ex. 16-18) and FARS2 (c.1082C>T and del ex.1-2) genes respectively; the three variants are novel. In order to find a potential ethnically-specific, disease-causing variant for HSP, we tested the heterozygote frequency of these variants among 130 anonymised DNA samples of Czech Roma individuals without clinical signs of HSP (HPS-negative). A novel deletion of ex.16-18 in the SPG11 gene was found in a heterozygous state in one individual in the HSP-negative group. Haplotype analysis showed that this individual and the patient with SPG11 shared the same haplotype. This supports the assumption that the identified SPG11 deletion could be a founder mutation in the Czech Roma population. In some Roma patients the disease may also be caused by two different biallelic pathogenic mutations.
Asunto(s)
Variación Genética/genética , Heterocigoto , Proteínas Mitocondriales/genética , Fenilalanina-ARNt Ligasa/genética , Proteínas/genética , Romaní/genética , Paraplejía Espástica Hereditaria/genética , Adolescente , Adulto , Niño , Preescolar , República Checa/etnología , Etnicidad/genética , Femenino , Humanos , Masculino , Persona de Mediana Edad , Linaje , Romaní/etnología , Paraplejía Espástica Hereditaria/diagnóstico , Paraplejía Espástica Hereditaria/etnología , Adulto JovenRESUMEN
Background: Migrant populations are among the hardest to reach for research purposes.Methods: An interdisciplinary research team piloted a modified version of Boal's simultaneous dramaturgy with Roma mothers in Belfast.Results: The technique, based on scripted performances, translations, and discussions, proved effective for engaging with this hard-to-reach population, despite low levels of literacy, high language barriers, and cultural separateness. The approach uncovered attitudes to pregnancy which reinforce health inequalities, and present significant challenges for improving the health of marginalized populations.Conclusions: This pilot underlines the importance of building trust through holistic approaches to working with hard-to-reach populations through the creative arts.
Asunto(s)
Arte , Accesibilidad a los Servicios de Salud , Complicaciones del Embarazo/prevención & control , Atención Prenatal , Migrantes , Femenino , Humanos , Irlanda del Norte , Embarazo , Complicaciones del Embarazo/etnología , Romaní/etnologíaRESUMEN
Objective: To describe the role of sex, age, educational level and psychosocial group-identification factors in well-being and satisfaction with life. METHOD: 229 Spanish Gypsies completed a survey of demographic data, psychological well-being, life satisfaction, ethnic identity and the individual's inclusion of self within the ingroup. RESULTS: (a) only level of studies is related to satisfaction with life; (b) participants with higher scores in ethnic identity reported more well-being and more life satisfaction; and (c) assessment of ethnic belonging affects more areas of well-being than does perception of closeness to the ingroup. CONCLUSION: objective conditions of deprivation are not related to well-being as reported by the participants; it is important to study how Spanish Gypsies value and perceive their ethnicity in order to predict their well-being and satisfaction with life.
Asunto(s)
Procesos de Grupo , Satisfacción Personal , Romaní/etnología , Identificación Social , Adulto , Factores de Edad , Escolaridad , Femenino , Humanos , Masculino , Factores Sexuales , España/etnologíaRESUMEN
BACKGROUND: Gypsy Roma Travellers are Europe's largest ethnic minority group. Yet they remain one of the most stigmatised communities who have significant health inequalities. Whilst nurses have a role in promoting health access, there have been minimal studies exploring health care professionals' attitudes towards these communities and no studies exploring nursing students' perceptions. OBJECTIVES: To explore nursing students understanding, knowledge and perceptions of working with Gypsy Roma Travellers. PARTICIPANTS: 23 nursing students from across four European countries (UK, Spain, Belgium, Turkey) participated in the study. The students ages ranged between 19 and 32â¯year old, there was a mix of students between year one to year three of their programme and both male (nâ¯=â¯3) and female students (nâ¯=â¯19). METHODS: This qualitative research utilised focus groups and one to one interviews based at the four different universities, all following a pre-agreed interview schedule. Focus groups and interviews were conducted by the research team in the students' first language and later translated into English for analysis using thematic analysis. The COREQ criteria were used in the reporting of the study. RESULTS: Four themes were identified which included: Exposure to Gypsy Roma Traveller Communities, Perceptions of Gypsy Roma Traveller cultures, Unhealthy lifestyles and culture and Nursing Gypsy Roma Travellers. CONCLUSIONS: Although personal and professional contact with Gypsy Roma Travellers was limited, most of the students' perceptions of these communities were negative. Nurse educational programmes need to embed transformational learning opportunities enabling student nurses to critically reflect upon values and beliefs of Gypsy Roma Travellers developed both before and during their nursing preparatory programme if they are to work effectively in a respectful, culturally sensitive way. There is also generally, a lack of research focussing upon healthcare professionals' attitudes towards these communities that needs to be explored through further research.
Asunto(s)
Percepción , Racismo/psicología , Romaní/etnología , Estudiantes de Enfermería/psicología , Adulto , Bélgica/etnología , Femenino , Grupos Focales/métodos , Humanos , Masculino , Investigación Cualitativa , Racismo/etnología , Racismo/estadística & datos numéricos , Romaní/estadística & datos numéricos , España/etnología , Estudiantes de Enfermería/estadística & datos numéricos , Encuestas y Cuestionarios , Turquía/etnología , Reino Unido/etnologíaRESUMEN
OBJECTIVE: The poor health of Roma is well documented, but there is only limited data regarding the health of Roma children. The aim of this study was to describe the socioeconomic status, health related behaviour, and health of children living in segregated Roma settlements, and to compare the data with that of non-Roma children. METHODS: In March-April of 2011, a cross-sectional questionnaire-based survey among 11-year-old (211 boys and 252 girls) and 13-year-old (205 boys and 247 girls) children living in Roma settlements was performed (response rate: 91.5%). These data were compared with data from the Health Behaviour in School-Aged Children (HBSC) survey carried out in 2009/2010. RESULTS: The parents of Roma children were substantially less educated and less likely to be actively employed, and Roma children reported lower material welfare than non-Roma ones. The prevalence of consuming sweets and soft drinks at least 5 times per week was 1.5-2 times higher among Roma children. The prevalence of regular intense physical activity was higher at the age of 13 years among Roma boys, while physical inactivity was substantially higher in both age groups among Roma girls. Almost one quarter of Roma children and approximately 14% of non-Roma children had tried smoking at the age of 11. More Roma boys tried alcohol at the age of 11 than non-Roma ones. One in ten Roma children was obese in both age groups. The self-rated health status of Roma children was worse than that of non-Roma children. CONCLUSIONS: Children living in Roma settlements reported poorer socioeconomic conditions, higher consumption of sweets and soft drinks, earlier smoking and alcohol initiation, and worse self-rated health, but with some exceptions do not differ in fruit or vegetable consumption and BMI from general child population. To promote health of children living in Roma settlements, a multi-sector approach, special health education, plus social and health promotion programmes are needed.
Asunto(s)
Conductas Relacionadas con la Salud/etnología , Estado de Salud , Características de la Residencia/estadística & datos numéricos , Romaní/estadística & datos numéricos , Adolescente , Consumo de Bebidas Alcohólicas/epidemiología , Consumo de Bebidas Alcohólicas/etnología , Niño , Estudios Transversales , Femenino , Encuestas Epidemiológicas/métodos , Humanos , Hungría/epidemiología , Masculino , Prevalencia , Romaní/etnología , Fumar/epidemiología , Fumar/etnología , Clase Social , Factores Socioeconómicos , Encuestas y CuestionariosRESUMEN
Women in rural Romania face significant health disadvantages. This qualitative pilot study describes the structural disadvantage experienced during pregnancy by women in rural Romania, focusing on the lived experiences of Roma women. We explore how women in rural communities experience pregnancy, their interactions with the healthcare system, and the role that ethnic and social factors play in pregnancy and childbearing. We conducted 42 semi-structured interviews with health and other professionals, seven narrative interviews with Roma and non-Roma women and a focus group with Roma women. Data were analysed using thematic analysis. We identified intersectional factors associated with women's pregnancy experiences: women perceiving pregnancy as both unplanned and wanted, joyful, and normal; women's and professionals' differing prenatal care perceptions; transport and cost related barriers to care; socioeconomic and ethnic discrimination; and facilitators to care such as social support, having a health mediator and having a doctor. Talking directly with professionals and Roma and non-Roma women helped us understand these many factors, how they are interconnected, and how we can work towards improving the pregnancy experiences of Roma women in rural Romania.
Asunto(s)
Accesibilidad a los Servicios de Salud , Romaní , Población Rural , Discriminación Social , Factores Socioeconómicos , Adulto , Femenino , Grupos Focales , Personal de Salud/psicología , Humanos , Entrevistas como Asunto , Proyectos Piloto , Embarazo , Investigación Cualitativa , Romaní/etnología , Romaní/estadística & datos numéricos , RumaníaRESUMEN
To determine possible variations in children's health status and mortality associated with variations in maternal stature, an anthropometric and demographic study was conducted in a Roma population of poor socio-economic status in rural Serbia. Data were collected during several years of anthropological fieldwork. The sample consisted of 691 women, ranging from 16 to 80â¯years of age. In addition to stature, Roma women's demographics, reproductive history, reproductive outcomes and health status of their children were collected. The results provide evidence of a significant association between mother's stature and their children's health and mortality, with a shorter mother's stature predisposing children to poor health and survival outcomes. The findings could prompt development of a definition of short stature among Roma women to evaluate the risk based on height distribution among the general Roma population.
Asunto(s)
Estatura/etnología , Salud Infantil/estadística & datos numéricos , Madres/estadística & datos numéricos , Romaní/estadística & datos numéricos , Adulto , Niño , Salud Infantil/etnología , Estudios Transversales , Femenino , Estado de Salud , Humanos , Lactante , Persona de Mediana Edad , Pobreza , Romaní/etnología , Serbia/etnologíaRESUMEN
AIM: Depression among older adults has serious implications, especially because suicide rates are higher in this group than in younger adults. Research has identified biological and social risk factors. However, studies addressing cultural and psychosocial factors associated with specific ethnic groups, such as Spanish Romani, are lacking. The objective of the present study was to establish the differential prevalence of depression among Romany and non-Romany people older than 55 years of age. It also aimed to explore how cultural, sociodemographic, and psychosocial factors predispose individuals to depression. METHODS: A total of 181 people were interviewed. The sample consisted of 95 self-adscribed Romany individuals and 86 non-Romany individuals over the age of 55; the latter group served as the control group. We performed bifactorial univariate anova, epidemiological analysis using Epi Info software, and analysis of correlations between Geriatric Depression Scale scores and the different factors analyzed. RESULTS: Significant differences in Geriatric Depression Scale score related to ethnicity and sex were found. Probable depression or depression in Romany men was four times higher than in non-Romany men. In Romany women, the risk was more than twice as high as in non-Romany women. Among the factors analyzed, income level, activity at home, and perception of being valued by family members showed significant differences between the groups. CONCLUSIONS: In short, we can state that Romany people develop symptoms of depression to a greater extent than non-Romany people, and although Romany women have a higher risk of depression, the differential effect of ethnicity is greater among Romany men. Income level, activity at home, and perception of being valued by family members are unambiguously related to ethnicity.
Asunto(s)
Depresión/etnología , Romaní/etnología , Apoyo Social , Anciano , Anciano de 80 o más Años , Depresión/psicología , Familia , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Prevalencia , Investigación Cualitativa , Romaní/estadística & datos numéricos , España/epidemiologíaRESUMEN
OBJECTIVE: To describe a large series of BIN1 patients, in which a novel founder mutation in the Roma population of southern Spain has been identified. METHODS: Patients diagnosed with centronuclear myopathy (CNM) at 5 major reference centers for neuromuscular disease in Spain (n = 53) were screened for BIN1 mutations. Clinical, histologic, radiologic, and genetic features were analyzed. RESULTS: Eighteen patients from 13 families carried the p.Arg234Cys variant; 16 of them were homozygous for it and 2 had compound heterozygous p.Arg234Cys/p.Arg145Cys mutations. Both BIN1 variants have only been identified in Roma, causing 100% of CNM in this ethnic group in our cohort. The haplotype analysis confirmed all families are related. In addition to clinical features typical of CNM, such as proximal limb weakness and ophthalmoplegia, most patients in our cohort presented with prominent axial weakness, often associated with rigid spine. Severe fat replacement of paravertebral muscles was demonstrated by muscle imaging. This phenotype seems to be specific to the p.Arg234Cys mutation, not reported in other BIN1 mutations. Extreme clinical variability was observed in the 2 compound heterozygous patients for the p.Arg234Cys/p.Arg145Cys mutations, from a congenital onset with catastrophic outcome to a late-onset disease. Screening of European Roma controls (n = 758) for the p.Arg234Cys variant identified a carrier frequency of 3.5% among the Spanish Roma. CONCLUSION: We have identified a BIN1 founder Roma mutation associated with a highly specific phenotype, which is, from the present cohort, the main cause of CNM in Spain.
Asunto(s)
Proteínas Adaptadoras Transductoras de Señales/genética , Efecto Fundador , Cuerpos de Mallory/patología , Distrofias Musculares/genética , Mutación/genética , Miopatías Estructurales Congénitas/genética , Proteínas Nucleares/genética , Romaní/genética , Escoliosis/genética , Proteínas Supresoras de Tumor/genética , Adolescente , Adulto , Niño , Estudios de Cohortes , Humanos , Cuerpos de Mallory/genética , Persona de Mediana Edad , Distrofias Musculares/diagnóstico por imagen , Distrofias Musculares/etnología , Miopatías Estructurales Congénitas/diagnóstico por imagen , Miopatías Estructurales Congénitas/etnología , Fenotipo , Estudios Prospectivos , Estudios Retrospectivos , Romaní/etnología , Escoliosis/diagnóstico por imagen , Escoliosis/etnología , España/etnología , Adulto JovenRESUMEN
Roma health inequities are a wicked problem. Despite concerted efforts to reduce them under the Decade of Roma Inclusion initiative, the health gap between Roma and non-Roma populations in Europe persists. To address this problem, the European Commission devised the National Roma Integration Strategies (NRIS). This paper provides a critical assessment of the implementation of the NRIS' health strand (NRIS-H) in Spain and proposes an evaluation tool to monitor Roma health policies - the Roma Health Integration Policy Index (RHIPEX). It also makes recommendations to promote Roma health governance. To achieve these goals, four community forums, 33 stakeholder interviews and a scoping review were conducted. Results show that the NRIS-H implementation is hindered by lack of political commitment and poor resource allocation. This has a negative impact on Roma's entitlement to healthcare and on their participation in decision-making processes, jeopardising the elimination of the barriers that undermine their access to healthcare and potentially contributing to reproduce inequalities. These unintended effects point out the need to rethink Roma health governance by strengthening intersectional and intersectoral policies, enabling transformative Roma participation in policymaking and guaranteeing shared socio-political responsibility and accountability.
Asunto(s)
Política de Salud , Disparidades en el Estado de Salud , Formulación de Políticas , Romaní/etnología , Accesibilidad a los Servicios de Salud , Humanos , Entrevistas como Asunto , Política , Asignación de Recursos/economía , España/etnologíaRESUMEN
Objetivo: Identificar los factores predisponentes, inhibidores y facilitadores que pueden afectar a la participación en los programas de cribado del cáncer colorrectal en la población gitana. Método: Estudio cualitativo exploratorio mediante técnica de grupo focal. Se realizaron tres grupos focales de hombres y tres de mujeres, con un total de 16 hombres y 18 mujeres participantes de población romaní, de 50-69 años de edad, de la provincia de Alicante. Se realizó un análisis del discurso con el modelo PRECEDE como marco de análisis. Resultados: Se identificaron diversas barreras a la participación, como la aversión de la población gitana a hablar de cáncer, el rechazo a anticipar un diagnóstico que puede provocar sufrimiento de la persona y su entorno familiar, escaso conocimiento de la enfermedad y del programa preventivo, rechazo hacia la recogida y manejo de las muestras, miedo y vergüenza ante la posible colonoscopia, aceptación de la voluntad divina, dificultades de comprensión y lectura, y percepción de estar discriminados por su etnia en el ámbito sanitario. Sin embargo, se identificaron factores predisponentes a la participación en el programa de cribado, como la predisposición favorable a recibir información pertinente a través de vías más apropiadas, así como su confianza en el consejo profesional. Conclusión: La predisposición a recibir la recomendación de participar en los programas de cribado colorrectal y una información comprensible de los profesionales sanitarios permiten entrever posibles estrategias de aproximación a este colectivo. Esto podría contribuir a la mejora de la participación de la población gitana en el programa de cribado de cáncer colorrectal y abrir nuevas vías para promover conductas preventivas (AU)
Objective: To identify predisposing, inhibitory and facilitating factors that may affect participation in colorectal cancer screening programs in the Roma population. Method: Qualitative and exploratory study by focus group technique. Three focus groups of men and three groups of women were carried out, with a total of 16 men and 18 women from the Roma population, aged 50-69 years, from the province of Alicante. A discourse analysis was performed with the PRECEDE model as an analysis framework. Results: Several barriers to participation were identified, such as the aversion of the Roma population to talk about cancer, refusal to anticipate a diagnosis that can cause suffering to the person and their family, poor knowledge of the disease and the preventive programmes, refusal to collect and handle samples, fear and shame about the colonoscopy, acceptance of divine will, difficulties in understanding and reading, and the perception of being discriminated by their ethnicity in the health sector. However, predisposing factors to participate in the screening programme also were identified, for example willingness to receive relevant information through more appropriate pathways, as well as their confidence in professional counselling. Conclusion: A willingness to receive the recommendation to participate and understanding information from health professionals have been identified. This will enable us to envisage potential strategies for approaching this population group. This could contribute to improved participation of the Roma population in colorectal cancer screening programmes and to open up new ways to promote preventive behaviours (AU)
Asunto(s)
Humanos , Masculino , Femenino , Persona de Mediana Edad , Colonoscopía/métodos , Conocimientos, Actitudes y Práctica en Salud , Neoplasias del Colon/diagnóstico , Neoplasias del Colon/cirugía , Diagnóstico Precoz , Romaní/educación , 25783/métodos , Tamizaje Masivo/métodos , Romaní/etnologíaRESUMEN
OBJECTIVE: This study analyses the differences in birth outcomes between Roma and non-Roma mothers and investigates the potential causes of such differences. METHODS: We conducted a retrospective cohort study of 1,989 non-Roma and 799 Roma mothers who gave birth in 2014 and 2015 at the Gynaecology and Obstetrics Clinic of Louis Pasteur University Hospital in Kosice. Data on mothers and new-born infants have been obtained from the birth book and from the reports on mothers at childbirth. For low birth weight we considered the weight of a new-born weighing less than 2,500 grams and as for premature birth we referred to childbirth before pregnancy week 37. The file was split by ethnicity and statistically processed in IBM SPSS Statistics 21.0. RESULTS: Our results confirmed a lower birth weight among Roma children (-365.4 grams, p < 0.001). The shorter gestation age and higher risk of premature birth were not statistically significant regarding Roma children. Based on the characteristics of Roma mothers, they are at higher risk of giving birth as minor (OR = 23.64; 95% CI = 15.29-36.54; p < 0.001), as single mothers (OR = 7.13; 95% CI = 5.80-8.76; p < 0.001), with basic education or lack of education (OR = 141.31; 95% CI = 100.47-198.76; p < 0.001). They also have a higher risk of smoking during pregnancy (OR = 23.84; 95% CI = 18.06-31.49; p < 0.001); drinking alcohol (OR = 11.71; 95% CI = 3.36-40.90; p < 0.001) and taking drugs (OR = 8.70; 95% CI = 1.81-42.02; p < 0.001). Roma women attended gynaecologists more rarely. CONCLUSION: It is therefore important to support the work of community health workers and stimulate collaboration between community health professionals, paediatricians and gynaecologists to overcome institutional barriers in maternity and child care for mothers living in Roma settlement.
Asunto(s)
Recién Nacido de Bajo Peso , Madres/estadística & datos numéricos , Resultado del Embarazo/etnología , Nacimiento Prematuro/etnología , Romaní/estadística & datos numéricos , Adulto , Peso al Nacer , Femenino , Humanos , Recién Nacido , Embarazo , Estudios Retrospectivos , Factores de Riesgo , Romaní/etnología , Eslovaquia/epidemiologíaRESUMEN
We describe how self-reported health (SRH) varies with gender and John Henryism (a strong behavioral predisposition to engage in high-effort coping to overcome adversity) in a low income sample of Serbian Roma. Data were collected in 2016 in several Roma settlements around Belgrade, Serbia. The sample consisted of 90 men and 112 women. In addition to John Henryism (JH), measured by a Serbian version of the John Henryism Scale, demographic data and data on SRH and family relationships dynamics were collected. SRH was positively correlated with age and JH, and negatively correlated with a history of chronic disease. Roma males and females differed significantly on JH and a number of other variables. For Roma women, multiple regression analyses revealed that a history of chronic disease, unemployment, age and daily stress level were negatively associated with SRH, while JH, SES and harmonious relationships with one's family/children were positively associated with SRH. For Roma men, there was no association between JH and SRH, but older age, being on welfare, a diagnosis of hypertension and extended family disputes were associated with poorer SRH. Hence, despite economic disadvantage and social exclusion from mainstream society, some Roma report good health and the ability to cope actively with economic disadvantage and social exclusion. This study adds to the literature on the cross-cultural relevance of JH theory for understanding health variations within socially and economically marginalized populations.