Dying and death in some Roma communities: ethical challenges.

The Roma people have specific values, therefore their views and beliefs about illness, dying and death are important to be known for health care providers caring for members of this community. The aim of this qualitative study based on 48 semi-structured interviews with Roma patients and caregivers in communities in two regions of Romania was to examine their selfdescribed behaviors and practices, their experiences and perceptions of illness, dying and death. Five more important themes about the Roma people facing dying and death have been identified: (1) The perception of illness in the community as reason for shame and the isolation that results from this, as well as the tendency for Roma people to take this on in their self image; (2) The importance of the family as the major support for the ill/dying individual, including the social requirement that family gather when someone is ill/dying; (3) The belief that the patient should not be told his/her diagnosis for fear it will harm him/her and that the family should be informed of the diagnosis as the main decision maker regarding medical treatment; (4) The reluctance of the Roma to decide on stopping life prolonging treatment; (5) The view of death as 'impure'. These results can be useful for health care providers working with members of the Roma community. By paying attention to and respecting the Roma patients' values, spirituality, and relationship dynamics, the medical staff can provide the most suitable healthcare by respecting the patients' wishes and expectations.

The health mediators-qualified interpreters contributing to health care quality among Romanian Roma patients.

In order to assure optimal care of patients with chronic illnesses, it is necessary to take into account the cultural factors that may influence health-related behaviors, health practices, and health-seeking behavior. Despite the increasing number of Romanian Roma, research regarding their beliefs and practices related to healthcare is rather poor. The aim of this paper is to present empirical evidence of specificities in the practice of healthcare among Romanian Roma patients and their caregivers. Using a qualitative exploratory descriptive design, this study is based on data gathered through three focus groups with 30 health mediators in the counties of Iasi and Cluj (Romania). We identified various barriers to access to healthcare for Roma patients: lack of financial resources and health insurance coverage, lack of cognitive resources or lack of personal hygiene, but also important cultural issues, such as the shame of being ill, family function, disclosure of disease-related information, patient's autonomy, attitudes towards illness and health practices, that should be considered in order to create a culturally sensitive environment in Romanian medical facilities:… The role of the health mediators within the context of cultural diversity is also discussed, as cultural brokers contributing to health care quality among Romanian Roma patients Bridging cultural differences may improve patient-healthcare provider relationships, but may have limited impact in reducing ethnic disparities, unless coupled with efforts of Roma communities to get involved in creating and implementing health policies.

Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities.

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor-patient relationship. The study aims to explore the Roma's beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the "silence conspiracy" being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient's autonomy. We identified ethical dilemmas concerning autonomy, lack of patients' real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient's right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.

[Detection of fusion gene--integral part of the assessment of children with acute leukemia]. / Detectia genelor de fuziune--parte integranta a evaluarii copiilor cu leucemie acuta.

UNLABELLED: Acute leukemia is the most common malignancy in children, being mostly produced by such chromosomal abnormalities as translocations or inversions causing gene fusion. Different clinical studies showed that translocations identified in ALL (acute lymphoblastic leukemia) and AML (acute myeloblastic leukemia) may be used to classify patients into risk groups. AIM: To detect three fusion genes that have been proven very important in patient classification: t(9:22)p190, t(4:11) and t(12:21). MATERIAL AND METHOD: We conducted a prospective study on 30 patients with acute leukemia diagnosed in the interval September 2009 - September 2010 at the Iasi Hemato-Oncology Unit of Saint Mary Hospital for Children. RESULTS: We found t(9:22)p190 in two patients, t(4:11) in two patients and t(12:21) in one patient. From the total of 30 patients, 7 were considered at high-risk, 3 were diagnosed with AML, and 20 were considered at standard-risk. CONCLUSIONS: Day 33 can still be considered the reference time in the evaluation of treatment response; patients with BCR-ABL seem to have a worse prognosis than those who do not have this translocation. The detection of fusion genes is very important in patient classification.

[Digestive disease in the immunocompromised patient with acute lymphoblastic leukemia. Experience of the IVth Pediatric Clinic--Oncology Department of the Iasi Sfânta Maria Children's Hospital]. / Patologia digestiva la pacientul imunocompromis prin leucemie acuta limfoblastica in experienta clinicii a IV-a pediatrie--sectia himato-oncologie a spitalului de copii Sfânta Maria" Iasi.

UNLABELLED: The goals of this paper were to study the various types of digestive disease in acute lymphoblastic leukemia (ALL), to characterize the children in the study group by age, sex and environment, by presence of liver and spleen enlargement, levels of GOT, GPT, vomiting, to evaluate methotrexate (MTX) serum levels al 24 hours and 48 hours after administration, and to analyze the correlation between MTX levels and MTX liver and blood toxicity. MATERIAL AND METHOD: We studied 39 immunocompromised children hospitalized in the IV-th Pediatric Clinic-Oncology Ward, between 1983-2005, with acute lymphoblastic leukemia (ALL); most of them exhibited defects of humoral immunity such as transitory hypogammaglobulinemia, and defects of the cellular immunity that accompanied hepatomegaly, hepatic cytolysis and biliary obstruction. RESULTS: The diagnostic of ALL was sustained by: medullar biopsy, lumbar punction, cytochemical reactions, blood cell count, flow-cytometry, methotrexate level determination. Hepatic damage was measured by: GOT, GPT, bilirubin, LDH, GGT, FA, HBS antigen, anti HCV antibodies, anti HVA antibodies, anti toxoplasmosis antibodies, anti CMV antibodies, serum protein levels, TQ, inflammation markers. A slight increase in the number of diagnosed ALL cases during the past two decades was noticed and ALL incidence was higher in boys than girls. Hematologic toxicity of MTX is a real problem, causing neutropenia. MTX also caused oral lesions (in 69.36% of children), vomiting (in 69.2% of children) and liver toxicity (in 51.3% of children). MTX serum level 24 hours after administration is significantly different from the serum level at 48 hours after administration. Thus, the use of calcium folinate is proved to be very effective. We have also demonstrated that vomiting had some other causes besides MTX administration.

[Statistical study of the evolution over ten years of the clinical and therapeutic approach in childhood soft tissue sarcoma]. / Studiul statistic clinico-terapeutic si evolutiv pe 10 ani in sarcoamele de tesuturi moi la copii si tineri.

UNLABELLED: Soft tissue sarcoma has a primitive mesenchymal origin and represents a heterogeneous group of malignant entities with a continuous rising frequency in the age range below 18. Rhabdomyosarcoma (RMS) constitutes 5.8% from the whole amount of pediatric solid tumors, taking the fourth place after CNS tumors, neuroblastoma, and Wilms tumors. The other category of non-rhabdomyosarcoma tumors in children and teenagers represents 3% of the solid malignancies under 18 years old. Our study looks at the particularities of the pathological, clinical, therapeutic aspects and the statistical correlation with prognosis. We included in the study a well-known category of soft tissue tumors called of uncertain malignancy. MATERIAL AND METHOD: The study was made between January 1995 and July 2005 in the Pediatric Department of Hematology and Oncology of the "Sf. Maria" Clinical Emergency Hospital Iasi on a group of 58 de patients ranging between 0 and 18 years old. RESULTS: Positive diagnostic confirmation was established on pathological grounds in optic microscopy and immuno-histo-enzymology performed on bioptic samples in Department of Pediatric Surgery and analyzed in Pathology Laboratory of "Sf. Maria" Clinical Emergency Hospital Iasi. Based on histological examination 19 cases (32.75%) were of rhabdomyosarcoma type with following subtypes: alveolar--7 patients, embryonic-- 9 cases, fusiform - 2 cases, bothrioid--1 case), 8 cases were undifferentiated soft tissue sarcomas and one patient had a tumor of pleiomorphic type; 13 children (22.41%) had non-rhabdomyosarcoma soft tissue sarcomas: 6 fibrosarcomas, 2 synovial sarcomas, 1 leiomyosarcoma, 1 Kaposi sarcoma, 1 case of malignant peripheral nerve sheath tumor, 1 case of angioma tumor, one liposarcoma; 16 cases were included in soft tissue tumors of uncertain origin (fibromatosis--6 cases, fibrous histiocytoma--4 cases, hamartoma--cases, myoblastoma--1 case, fibro-xanthoma--1 case, hemangioendothelioma--1 case); 1 PPNET (Askin tumor). CONCLUSIONS: The continuously augmented incidence of soft tissue sarcoma in young ages and the advanced stages initial presentations of tumors require a much more serious and rhythmic survey at general practitioner level. An improvement of diagnostic means is useful, taking into account the limits of optic microscopy. Therapy must be stage and histology adapted; lowering risk toxicity of good prognosis cases and enhancing doses when required are the only reasonable options to avoid over treatment and to have a much better survival rate.